Yesterday, Reiss and his new therapists built a monster-sized tent fort in his room constructed from blankets, beanbag chairs, and aluminum-framed kids papasan chairs. Reiss loved it so much, he asked if he could keep it up and sleep in there last night. And that is exactly what he did.
Of course no fort would be complete without rules so Reiss and his cohorts drew up a list. These make me laugh out loud:
1. No stepping on the roof.
2. No licking the wand. (Referring to the princess wands Milla brought to the project.)
3. No sitting on beanbags.
4. No running.
5. No stepping on the chair.
6. No knocking down the (Lego) tower.
7. No taking the blankets off.
8. No pushing the chair.
9. Do not tell anyone the password (which was "blah blah." Oops...I told the password.). Only friends.
10. No banging the wand on the floor.
Those ten rules completed the list yesterday but after playing in the tent for a little while this morning, Reiss and Milla felt they needed to added an eleventh rule.
11. No tearing down the chimney in the tent.
This last one may prove itself to be a difficult rule to follow, especially considering I have no idea where the chimney is located inside the tent.
Showing posts with label therapy. Show all posts
Showing posts with label therapy. Show all posts
Tuesday, March 8, 2011
Thursday, March 3, 2011
Freedom!!!
I've got a feelin'...
That tomorrow's gonna be a good, good da-a-ay......woohooo!
(Anyone else out there a Peas fan too?)
Remember a few weeks back when I mentioned a BIG change we had coming our way?
Originally, I had not planned to spill the beans until this coming weekend but due to an unexpected turn of events, I have the freedom to go ahead and reveal the big surprise. Do not get too worked up - it is really only a big change for my family and not something others will find much excitement in knowing.
Are you ready?
(Drumroll...)
We are changing providers for Reiss's in-home ABA (applied behavior analysis) therapy program!
See, I warned you. Not terribly exciting, right? However, considering the intensity and numerous hours of ABA therapy Reiss puts in on a weekly basis, it is a big change for our family and one we are certainly looking forward to making.
The decision to change providers was not an easy one to make. Actually, the decision to change providers began not at all as a quest to find another provider but rather, as a mission to simply research other options in our area for in-home ABA and ABA centers should we decide to make a change in the future. After a series of events occurred and subsequent tension began to build between ourselves and our current provider, we felt it was best to really dig in and do our homework regarding looking into the other options we found available to us. There was the unfortunate tension building, but at that point, our efforts were still only meant to provide us with options in the event of a "what if" situation were to happen.
A funny thing happened along the way though, and once we began looking into several other options, including one center and three in-home providers, we became quite impressed with one particular provider who services our area. The more we talked with her, the more confident we felt that she was was a great option to go with now and not just to use later as a "just in case" option. It felt right and it felt like a change now was in our best interest after all. She was very open and honest with everything we asked of her. She made no qualms about meeting with me on two occasions. She did not skip a beat when asked to provide references of other families with whom she works. I, personally, checked each of her references not once or twice, but four separate times, calling them back whenever we thought of something else we would like to ask.
Tomorrow morning I will meet with our new provider and the two therapists she has hired to work with Reiss. I stress the number because our current provider has four therapists working with Reiss. At one time, we had six therapists working with him for a total of only thirty-five hours per week. At our best, we had three therapists. The unusually high number of therapists has always presented me with a level of frustration, as I knew from speaking with other parents whose children receive ABA through other providers that they typically had two therapists, and a maximum of three therapists for a full forty-hour week of therapy. If your own child receives ABA or has in the past, I would love your input as to the number of therapists you have/had and whether or not you feel more is better or less is best.
Next Monday, Reiss will meet his new therapists and begin therapy and a whole new fresh start. I am so excited for him and I am excited for my family, as it feels like we are about to embark on a totally new journey. I feel free and like a weight has been lifted from my shoulders.
It is almost as though the dreary and cloudy bitterness of winter has dissipated and the sun is shining and Spring has arrived. Well, until I remember that it will probably be around 30 degrees when I wake up tomorrow morning. But I'm on this high, so who cares if there is frost on the windows and the furnace continues to run non-stop for the next few weeks?
And now it's official. My high has caused me to babble meaninglessly about frosty windows and other nonsense. So I will leave with that.
To be continued...
That tomorrow's gonna be a good, good da-a-ay......woohooo!
(Anyone else out there a Peas fan too?)
Remember a few weeks back when I mentioned a BIG change we had coming our way?
Originally, I had not planned to spill the beans until this coming weekend but due to an unexpected turn of events, I have the freedom to go ahead and reveal the big surprise. Do not get too worked up - it is really only a big change for my family and not something others will find much excitement in knowing.
Are you ready?
(Drumroll...)
We are changing providers for Reiss's in-home ABA (applied behavior analysis) therapy program!
See, I warned you. Not terribly exciting, right? However, considering the intensity and numerous hours of ABA therapy Reiss puts in on a weekly basis, it is a big change for our family and one we are certainly looking forward to making.
The decision to change providers was not an easy one to make. Actually, the decision to change providers began not at all as a quest to find another provider but rather, as a mission to simply research other options in our area for in-home ABA and ABA centers should we decide to make a change in the future. After a series of events occurred and subsequent tension began to build between ourselves and our current provider, we felt it was best to really dig in and do our homework regarding looking into the other options we found available to us. There was the unfortunate tension building, but at that point, our efforts were still only meant to provide us with options in the event of a "what if" situation were to happen.
A funny thing happened along the way though, and once we began looking into several other options, including one center and three in-home providers, we became quite impressed with one particular provider who services our area. The more we talked with her, the more confident we felt that she was was a great option to go with now and not just to use later as a "just in case" option. It felt right and it felt like a change now was in our best interest after all. She was very open and honest with everything we asked of her. She made no qualms about meeting with me on two occasions. She did not skip a beat when asked to provide references of other families with whom she works. I, personally, checked each of her references not once or twice, but four separate times, calling them back whenever we thought of something else we would like to ask.
Tomorrow morning I will meet with our new provider and the two therapists she has hired to work with Reiss. I stress the number because our current provider has four therapists working with Reiss. At one time, we had six therapists working with him for a total of only thirty-five hours per week. At our best, we had three therapists. The unusually high number of therapists has always presented me with a level of frustration, as I knew from speaking with other parents whose children receive ABA through other providers that they typically had two therapists, and a maximum of three therapists for a full forty-hour week of therapy. If your own child receives ABA or has in the past, I would love your input as to the number of therapists you have/had and whether or not you feel more is better or less is best.
Next Monday, Reiss will meet his new therapists and begin therapy and a whole new fresh start. I am so excited for him and I am excited for my family, as it feels like we are about to embark on a totally new journey. I feel free and like a weight has been lifted from my shoulders.
It is almost as though the dreary and cloudy bitterness of winter has dissipated and the sun is shining and Spring has arrived. Well, until I remember that it will probably be around 30 degrees when I wake up tomorrow morning. But I'm on this high, so who cares if there is frost on the windows and the furnace continues to run non-stop for the next few weeks?
And now it's official. My high has caused me to babble meaninglessly about frosty windows and other nonsense. So I will leave with that.
To be continued...
Tuesday, March 1, 2011
A Reminder of the Prevalence of Autism
Today was the best, if not the strangest, afternoon I can remember having in quite awhile. It was a great day but with the number of other autism moms I saw today (amongst only a few moms total), it also served as a reminder of the prevalence of autism.
First, we started off by going to the dentist. Both kids behaved fairly well. That is, if you don't count the timeout Reiss got for banging on the side of the aquarium in the dentist's waiting room. It was not very hard but certainly hard enough to scare the bejeezus out of any fish unfortunate enough to call the tank their home.
In the waiting room, it was nice to recognize and talk with another autism mom whose children used to go to the same physical therapy office where my children went. Her boys' appointments coincided with my kids' appointments and we used to chat each week. Our insurance allotment of appointments ran out mid-year last year and I kinda lost touch with the mom, other than the occasional passing of one another on Facebook.
Our visit to the dentist's office reminded me once again of my spectacular memory, or rather, the lack of it. The dentist found a somewhat large cavity in one of Milla's teeth but it was nothing new to me. He told me about it on the last visit but I forgot to make an appointment to have it fixed. It was only after the dentist examined Milla on this appointment that I remembered that she had a small cavity. That small cavity is no longer small.
When Milla was finished with her exam and had picked out her Princess and the Frog toothbrush, her ABA therapist took her to her social skills group. Cavity-free Reiss and I then left and headed to the Y.
At the Y, I hadn't even taken my coat off when I saw there was another autism mom I know. This one I knew from her son and Reiss being in the same developmental preschool. We started talking, or maybe venting is a better word for it. We both feel lost about where to send our children for kindergarten next year. Another mom heard us talking and came over and joined in our conversation.
Thank goodness for eavesdroppers, especially when they are other autsim moms!
I felt especially fortunate for this other mom listening to our conversation because when she joined us, I learned that she is not only in my school district but, with a son who is ten years old, is also experienced in dealing with my school district's ways - two traits that I have found particularly difficult to find simultaneously occurring with other autism parents I meet. We hit it off immediately and an added bonus is that she has a daughter Milla's age. We exchanged phone numbers and I am excited at the prospect of having a new playmate for Milla.
As if all that excitement was not enough for one afternoon, another mom I have seen at the Y on occasion came over and spoke to us. She has two nephews with autism. We talked for awhile and she offered that her nephews recently went gluten-free and have shown amazing improvements.
While all this was going on Reiss played and played and played for nearly two hours straight with minimal intervention on my part. He played so wonderfully that I doubt anyone realized Reiss is just a little different than other children. Had it not been for seeing so many other autism moms, I may have even felt like any other parent just having an afternoon out at the Y. I think, just maybe, I may have even relaxed a little bit....
First, we started off by going to the dentist. Both kids behaved fairly well. That is, if you don't count the timeout Reiss got for banging on the side of the aquarium in the dentist's waiting room. It was not very hard but certainly hard enough to scare the bejeezus out of any fish unfortunate enough to call the tank their home.
In the waiting room, it was nice to recognize and talk with another autism mom whose children used to go to the same physical therapy office where my children went. Her boys' appointments coincided with my kids' appointments and we used to chat each week. Our insurance allotment of appointments ran out mid-year last year and I kinda lost touch with the mom, other than the occasional passing of one another on Facebook.
Our visit to the dentist's office reminded me once again of my spectacular memory, or rather, the lack of it. The dentist found a somewhat large cavity in one of Milla's teeth but it was nothing new to me. He told me about it on the last visit but I forgot to make an appointment to have it fixed. It was only after the dentist examined Milla on this appointment that I remembered that she had a small cavity. That small cavity is no longer small.
When Milla was finished with her exam and had picked out her Princess and the Frog toothbrush, her ABA therapist took her to her social skills group. Cavity-free Reiss and I then left and headed to the Y.
At the Y, I hadn't even taken my coat off when I saw there was another autism mom I know. This one I knew from her son and Reiss being in the same developmental preschool. We started talking, or maybe venting is a better word for it. We both feel lost about where to send our children for kindergarten next year. Another mom heard us talking and came over and joined in our conversation.
Thank goodness for eavesdroppers, especially when they are other autsim moms!
I felt especially fortunate for this other mom listening to our conversation because when she joined us, I learned that she is not only in my school district but, with a son who is ten years old, is also experienced in dealing with my school district's ways - two traits that I have found particularly difficult to find simultaneously occurring with other autism parents I meet. We hit it off immediately and an added bonus is that she has a daughter Milla's age. We exchanged phone numbers and I am excited at the prospect of having a new playmate for Milla.
As if all that excitement was not enough for one afternoon, another mom I have seen at the Y on occasion came over and spoke to us. She has two nephews with autism. We talked for awhile and she offered that her nephews recently went gluten-free and have shown amazing improvements.
While all this was going on Reiss played and played and played for nearly two hours straight with minimal intervention on my part. He played so wonderfully that I doubt anyone realized Reiss is just a little different than other children. Had it not been for seeing so many other autism moms, I may have even felt like any other parent just having an afternoon out at the Y. I think, just maybe, I may have even relaxed a little bit....
Monday, August 9, 2010
An Early Morning Stumble
After a rather early awakening this morning by a certain two-year-old, I found myself tossing and turning, trying unsuccessfully to go back to sleep. So, as I almost always do when battling insomnia, I got up and went to the computer.
As the new school year approaches, just thinking of Reiss attending public school gives me heart palpitations. School starts in four days and we are not even certain whether or not he will be going on to kindergarten within our school system. Yes, with there only being a matter of four days that separate us from now until the beginning of school, we should know if our child is going to start school and yes, most people - including other parents of children with autism - do know whether or not their child is going to go to school. However, we are not "most" people and "most" people do not have to deal with case conferences, IEP's, therapists, and assorted other things that make up the story behind why we do not know if our child will be attending kindergarten within the public school system. But that story is one for another time, not now.
Back to my heart palpitations and the anxiety causing them...
In the past few weeks, merely the thought of sending Reiss to public school darn near gives me a full-on anxiety attack. My mind races with news stories of children with autism being abused by teachers, disappearing from school, and of one autistic boy who even drowned in a school's pool. I think about how no one knows a child with autism like his own parents. I think about how I have tried to explain to one of my own relatives that my child does not comprehend danger and is often a "runner." I also recall the response received and it was not one that provided me reassurance of a total understanding of the problem. If I cannot get someone who is related to my child to "get" it, how on earth am I going to stress the importance of safety to a teacher - someone who is merely being paid to educate my child, not make sure for instance, that he comes back from the bathroom or eats only the food sent to school with him or does not have a meltdown because his pants got water on them or...or...or...?
It is all the "ors" that have brought homeschooling back to the forefront of my thoughts, so with not being able to sleep this morning, I began digging around (again) online for homeschool resources and specifically, for people who have children with autism who they homeschool. In doing so, I stumbled across Free Printable Fun, a fun little blog written by Jamie Sue, a crafty mom to a five-year-old boy with autism.
Jamie Sue does not post very often and from what I have read so far, I do not get the impression that she homeschools (but I could be wrong!) or that she uses the projects she posts as homeschool materials. Again, finding her site was simply a stumble for me that appeared when I Googled "homeschool autism resources." However, the content of her posts are valuable and the projects seem fun, even if they are not meant to be part of a structured homeschool curriculum - although some of them could be used in conjunction with other materials for that very purpose.
As the new school year approaches, just thinking of Reiss attending public school gives me heart palpitations. School starts in four days and we are not even certain whether or not he will be going on to kindergarten within our school system. Yes, with there only being a matter of four days that separate us from now until the beginning of school, we should know if our child is going to start school and yes, most people - including other parents of children with autism - do know whether or not their child is going to go to school. However, we are not "most" people and "most" people do not have to deal with case conferences, IEP's, therapists, and assorted other things that make up the story behind why we do not know if our child will be attending kindergarten within the public school system. But that story is one for another time, not now.
Back to my heart palpitations and the anxiety causing them...
In the past few weeks, merely the thought of sending Reiss to public school darn near gives me a full-on anxiety attack. My mind races with news stories of children with autism being abused by teachers, disappearing from school, and of one autistic boy who even drowned in a school's pool. I think about how no one knows a child with autism like his own parents. I think about how I have tried to explain to one of my own relatives that my child does not comprehend danger and is often a "runner." I also recall the response received and it was not one that provided me reassurance of a total understanding of the problem. If I cannot get someone who is related to my child to "get" it, how on earth am I going to stress the importance of safety to a teacher - someone who is merely being paid to educate my child, not make sure for instance, that he comes back from the bathroom or eats only the food sent to school with him or does not have a meltdown because his pants got water on them or...or...or...?
It is all the "ors" that have brought homeschooling back to the forefront of my thoughts, so with not being able to sleep this morning, I began digging around (again) online for homeschool resources and specifically, for people who have children with autism who they homeschool. In doing so, I stumbled across Free Printable Fun, a fun little blog written by Jamie Sue, a crafty mom to a five-year-old boy with autism.
Jamie Sue does not post very often and from what I have read so far, I do not get the impression that she homeschools (but I could be wrong!) or that she uses the projects she posts as homeschool materials. Again, finding her site was simply a stumble for me that appeared when I Googled "homeschool autism resources." However, the content of her posts are valuable and the projects seem fun, even if they are not meant to be part of a structured homeschool curriculum - although some of them could be used in conjunction with other materials for that very purpose.
Tuesday, June 29, 2010
A Monster Of A Party!
Last week, our first-born monkey turned five years old!
I always have to laugh when other parents make the observation of their children growing up so quickly or empty-nesters whose grown children reached adulthood "in the wink of an eye." They all seem to say the same thing: "Where in the world does the time go?" Well, I will tell you where it goes or at least, where it went for me. For the first three-and-a-half years of being a parent, it ticked by so incredibly slowly all while I wondered if my "baby" - who was definitely no longer a baby - would ever stop waking every hour through the night, sometimes two or three times per hour, and if I would ever get any sleep again in this lifetime.
Alas, after starting our special diet and being convinced of its effectiveness on the very first night (the first night Reiss ever slept through the night in his whole entire short life!), we were finally getting some sleep and everyone thankfully survived. And now we are at five years old! FIVE! Who knew I would make it this long and live to tell about it? But I am definitely here and, unlike back then, time does not tick by nearly as slowly now that I am asleep for at least part of it in any given twenty-four hour period.
Enough of my woes....Can you tell I am so thankful for sleep?
Last Saturday we had a party for Reiss and rented a bounce house in the shape of a monster truck. Yes, I know how much bounce houses cost and I am also aware that our rental cost almost as much as buying one. And furthermore, I have chosen to say "enough is enough" regarding toys and clothes and stuff and things that require space for storage and I made the wise decision to go with the option of having someone else worry about where to store such a large item as a bounce house.
Yes, renting a bounce house is not an investment with endless returns but not having to store it makes up for all those "lost" returns.
Reiss wanted to keep the bounce house, as trucks are one of his favorite things but, as we explained to him, by having people who come to get the bounce house (instead of keeping it), we get to choose a different one every time we rent one. Milla has already called "dibs" on the princess castle bounce house for her birthday in October. Little do they know that renting a bounce house is not something that will happen with a whole lot of frequency.
We took some really adorable photos, however, due to privacy issues with other parents' children, only photos of Reiss and Milla are posted.
All of the above photos were taken before Reiss's party began and while Reiss and Milla were the only children playing in the bounce house. Just prior to the start of the party, I changed Milla into a perfectly-party-appropriate dress with a cupcake on it.
Reiss painting a car bank. It was one of the prizes leftover in the prize bin after the party.
From left: Crystal (Reiss's BCBA for his ABA therapy), Reiss, Milla, Heather (one of Reiss's ABA therapists)
Reiss getting ready to open his first gift. In this photo, we also have Anne, who is not one of Reiss's therapists but works for Crystal and was here with one of the children present at the party.
Reiss had $23 from his birthday to spend at Toys R Us. So what'd he get? A princess dress for Milla! We tried to persuade him otherwise but that is what he wanted to buy. He also bought himself one of those hippity-hop balls. I have no idea what the real name is for them. They are those things a child sits on, holds onto the handle, and jumps around on.
My little five-year-old prince and princess....
I always have to laugh when other parents make the observation of their children growing up so quickly or empty-nesters whose grown children reached adulthood "in the wink of an eye." They all seem to say the same thing: "Where in the world does the time go?" Well, I will tell you where it goes or at least, where it went for me. For the first three-and-a-half years of being a parent, it ticked by so incredibly slowly all while I wondered if my "baby" - who was definitely no longer a baby - would ever stop waking every hour through the night, sometimes two or three times per hour, and if I would ever get any sleep again in this lifetime.
Alas, after starting our special diet and being convinced of its effectiveness on the very first night (the first night Reiss ever slept through the night in his whole entire short life!), we were finally getting some sleep and everyone thankfully survived. And now we are at five years old! FIVE! Who knew I would make it this long and live to tell about it? But I am definitely here and, unlike back then, time does not tick by nearly as slowly now that I am asleep for at least part of it in any given twenty-four hour period.
Enough of my woes....Can you tell I am so thankful for sleep?
Last Saturday we had a party for Reiss and rented a bounce house in the shape of a monster truck. Yes, I know how much bounce houses cost and I am also aware that our rental cost almost as much as buying one. And furthermore, I have chosen to say "enough is enough" regarding toys and clothes and stuff and things that require space for storage and I made the wise decision to go with the option of having someone else worry about where to store such a large item as a bounce house.
Yes, renting a bounce house is not an investment with endless returns but not having to store it makes up for all those "lost" returns.
Reiss wanted to keep the bounce house, as trucks are one of his favorite things but, as we explained to him, by having people who come to get the bounce house (instead of keeping it), we get to choose a different one every time we rent one. Milla has already called "dibs" on the princess castle bounce house for her birthday in October. Little do they know that renting a bounce house is not something that will happen with a whole lot of frequency.
We took some really adorable photos, however, due to privacy issues with other parents' children, only photos of Reiss and Milla are posted.
All of the above photos were taken before Reiss's party began and while Reiss and Milla were the only children playing in the bounce house. Just prior to the start of the party, I changed Milla into a perfectly-party-appropriate dress with a cupcake on it.
Reiss painting a car bank. It was one of the prizes leftover in the prize bin after the party.
From left: Crystal (Reiss's BCBA for his ABA therapy), Reiss, Milla, Heather (one of Reiss's ABA therapists)
Reiss getting ready to open his first gift. In this photo, we also have Anne, who is not one of Reiss's therapists but works for Crystal and was here with one of the children present at the party.
Reiss had $23 from his birthday to spend at Toys R Us. So what'd he get? A princess dress for Milla! We tried to persuade him otherwise but that is what he wanted to buy. He also bought himself one of those hippity-hop balls. I have no idea what the real name is for them. They are those things a child sits on, holds onto the handle, and jumps around on.
My little five-year-old prince and princess....Sunday, June 20, 2010
Our Sunday BEST: A Revelation
For nearly five years in our house, every Saturday morning, without fail, we have had Pancake Saturday. In that time, I cannot recall a single Saturday when we have not made pancakes and we always make them from scratch.
For several months now, we have also eaten the same thing almost every Sunday morning as the previous Sunday morning and it was just this afternoon when I had a revelation. The acronym for our bacon, eggs, smoothies, and toast we eat on Sundays spells out the word "BEST." So from this day forward, our weekend breakfasts will consist of Pancake Saturday and our Sunday BEST.
Yes, I will admit I have some oddities. It's okay - I'm fine with owning up to those oddities.
By the way, I was going to wish you all a Happy Father's Day but with it being 12:22 AM on Monday morning, it looks like I am a little late to the punch. Hope it was a good one!
For our Father's Day.......
--- I called my own father and wished him a happy birthday and a happy Father's Day. My dad's birthday falls on the same date every year (one would hope so, right?) and some years that happens to be on Father's Day. This year was one of those years.
--- Reiss gave James a "hot glove" (that is a Reiss-ism for what others might call an oven mitt) he made at his ABA social group. It says, "Hands down, you're the greatest dad! Happy Father's Day!" Reiss wrapped it in some paper with the ends still open and set it on his and Milla's toy kitchen. He then waited to give it to James this morning. Too bad he already told Daddy two days ago what he was going to give him. Nonetheless, James reacted with surprise and excitement today when given his gift.
--- We went for a short road trip to Bloomington, a city approximately 45 minutes away from our home. We went to see two sets of aunts and uncles on my mother's side of the family who are currently in town for "mini-college," a week's worth of informational seminars on various topics at Indiana University. One set of relatives are in from Albuquerque, New Mexico and the other calls Clover, South Carolina home. It was really great to see them and unfortunately, we do not see them enough. I know they were disappointed that we could not go have dinner with them but Reiss and Milla were going downhill fast after already having visited for two hours and we are only just now beginning to get a hold on the whole dining-out-with-a-child-who-cannot-sit-still-for-five-minutes-let-alone-an-hour-or-more kind of thing, so long story short, we bid our good-byes and headed for home. They all went out for Indian cuisine and we came home to chicken satay with 100% buckwheat soba noodles and peas. The grilled chicken and peas were leftover from last night's dinner leaving me with only having to cook the soba noodles - for seven minutes, not eight like the package directs. I learned that little tidbit from Kelly over at The Spunky Coconut.
--- Before the visiting with the relatives, we went and bought a cooler and a bunch of ice at the superstore where I do some of our grocery shopping so that we could take it with us to go to another kind of grocery - a natural foods market. The irony that I was buying a cooler at one grocery store so that I could shop at another almost makes me laugh out loud. Actually, I would let out a good chuckle if it weren't for the fact that my children sometimes seem to sleep as light as special forces military personnel.
After purchasing the cooler, we set out on our little roadtrip and then to Bloomingfoods once we arrived in Bloomington. Peppadew peppers, maple sugar, 240 Sweet artisan marshmallows, and Himala Salt were just a few of the wonderful little treats I picked up while there. I have not found Peppadew peppers anywhere locally. Perhaps I could find them and any of the other items if I were to go to Whole Foods but that is a bit of a drive from us as well. The Himala Salt is easy enough to find at my usual health food stores but neither carries the large rock crystals for grinding.
Bloomingfoods was a nice little diversion and I will admit that I'm just plain giddy with my artisan marshmallows and Peppadew peppers (I bought both the red and yellow variety!) but the produce at Bloomingfoods was a bit pricier than I'm used to paying. For example, their organic bananas were $.99/lb. I am accustomed to paying $.69 or $.79 per pound at regular price or $.29-$.49 per pound when they are getting overripe and are marked down.
--- And finally, I was reminded that, on this day one year ago, Reiss had his first seizure.
For several months now, we have also eaten the same thing almost every Sunday morning as the previous Sunday morning and it was just this afternoon when I had a revelation. The acronym for our bacon, eggs, smoothies, and toast we eat on Sundays spells out the word "BEST." So from this day forward, our weekend breakfasts will consist of Pancake Saturday and our Sunday BEST.
Yes, I will admit I have some oddities. It's okay - I'm fine with owning up to those oddities.
By the way, I was going to wish you all a Happy Father's Day but with it being 12:22 AM on Monday morning, it looks like I am a little late to the punch. Hope it was a good one!
For our Father's Day.......
--- I called my own father and wished him a happy birthday and a happy Father's Day. My dad's birthday falls on the same date every year (one would hope so, right?) and some years that happens to be on Father's Day. This year was one of those years.
--- Reiss gave James a "hot glove" (that is a Reiss-ism for what others might call an oven mitt) he made at his ABA social group. It says, "Hands down, you're the greatest dad! Happy Father's Day!" Reiss wrapped it in some paper with the ends still open and set it on his and Milla's toy kitchen. He then waited to give it to James this morning. Too bad he already told Daddy two days ago what he was going to give him. Nonetheless, James reacted with surprise and excitement today when given his gift.
--- We went for a short road trip to Bloomington, a city approximately 45 minutes away from our home. We went to see two sets of aunts and uncles on my mother's side of the family who are currently in town for "mini-college," a week's worth of informational seminars on various topics at Indiana University. One set of relatives are in from Albuquerque, New Mexico and the other calls Clover, South Carolina home. It was really great to see them and unfortunately, we do not see them enough. I know they were disappointed that we could not go have dinner with them but Reiss and Milla were going downhill fast after already having visited for two hours and we are only just now beginning to get a hold on the whole dining-out-with-a-child-who-cannot-sit-still-for-five-minutes-let-alone-an-hour-or-more kind of thing, so long story short, we bid our good-byes and headed for home. They all went out for Indian cuisine and we came home to chicken satay with 100% buckwheat soba noodles and peas. The grilled chicken and peas were leftover from last night's dinner leaving me with only having to cook the soba noodles - for seven minutes, not eight like the package directs. I learned that little tidbit from Kelly over at The Spunky Coconut.
--- Before the visiting with the relatives, we went and bought a cooler and a bunch of ice at the superstore where I do some of our grocery shopping so that we could take it with us to go to another kind of grocery - a natural foods market. The irony that I was buying a cooler at one grocery store so that I could shop at another almost makes me laugh out loud. Actually, I would let out a good chuckle if it weren't for the fact that my children sometimes seem to sleep as light as special forces military personnel.
After purchasing the cooler, we set out on our little roadtrip and then to Bloomingfoods once we arrived in Bloomington. Peppadew peppers, maple sugar, 240 Sweet artisan marshmallows, and Himala Salt were just a few of the wonderful little treats I picked up while there. I have not found Peppadew peppers anywhere locally. Perhaps I could find them and any of the other items if I were to go to Whole Foods but that is a bit of a drive from us as well. The Himala Salt is easy enough to find at my usual health food stores but neither carries the large rock crystals for grinding.
Bloomingfoods was a nice little diversion and I will admit that I'm just plain giddy with my artisan marshmallows and Peppadew peppers (I bought both the red and yellow variety!) but the produce at Bloomingfoods was a bit pricier than I'm used to paying. For example, their organic bananas were $.99/lb. I am accustomed to paying $.69 or $.79 per pound at regular price or $.29-$.49 per pound when they are getting overripe and are marked down.
--- And finally, I was reminded that, on this day one year ago, Reiss had his first seizure.
Wednesday, June 9, 2010
Here You Are, June!
With my last post I hoped for warm weather and the arrival of June and now, here it is, the month of sunny days and strawberry picking in the Hoosier state. June is not only here but close to a third gone. My apologies for sounding cliche but seriously, where does the time go? What's more is it has been close to three weeks since my last post. Needless to say, I have become quite the blogging slacker. Not to be confused with a general slacker, which by far, does not describe me, despite my wishes to be able to do less and relax more.
So what have we been up to these last few weeks?
We have gone to downtown Indianapolis and rented a paddle boat on the canal. The photos from that outing.....
(To be read to the same beat as "Five Little Monkeys") Two little monkeys rolling down a hill, one got grass stains on his knee. Momma didn't worry and she didn't fret. She just let them play and frolic with glee.
Where might the photos of the actual paddle boat be, you ask? Well, long story short, paddle boats do not come equipped with seatbelts. Or at least, the paddle boat we rented did not come with them. Between trying to paddle the boat in a semi-sane path of travel through the canal and making certain none of our belongings - to include our backpack and children - fell overboard, conducting a photoshoot fell to the bottom of the priorities list.
Two weekends ago, we went to a USDA certified organic farm to "see the cows." There was not much to see but the man working the tiny little store there was nice enough to walk us out to the barn for the kids to see some calves and the bull. We purchased a few potatoes, sweet potatoes, and onions. We also bought a pound of ground pork and much to my disappointment, they were out of veal at the time. We have a few photos from that little outing but as with so many things in our house, they have gotten lost in the shuffle. Actually, there is a pretty good chance they are still on the camera waiting to be downloaded. Guess I will find out next time I use the camera.
We have also gone to a neurologist appointment, a DAN! appointment, and spent countless hours doing ABA, occupational, and speech therapies.
We had a laugh-so-hard-I-cried moment here on Monday evening. I'm not quite sure why I decided to set up the pool that day, as it was quite cool for a June day but for some reason I asked the kids if they wanted to set it up and (stupid question, huh?) of course they did. It was one of those impulse decisions that was not well thought out at all and coaxing either child into the water meant boiling water in a big pan in the house several times and pouring it into the pool. (Yes, I always make them get out of the water when we pour the boiling water in....give me some credit, will ya?)
Anyway, Reiss had gotten out of the pool and walked around in the grass and the driveway a bit before coming back to the pool and stepping in, only to yell "There's a SNAKE in the pool!" loud enough for the neighbors on the next street to hear. My husband went over to inspect where Reiss was pointing to discover our "snake" was a dried up dead worm that was two inches long if it was a mile. He pulled it out, held it up, and then discarded it into the grass. And then that is when my laughing and snorting and, eventually, the tears began to stream out of me.
As I am sitting here, I just remembered Reiss has also GRADUATED since my last post. Yes, I know, this seems like a rather big thing to forget but in my defense, a lot happens in three weeks and I have slept since then....even if only a little. His graduation produced several adorable photos. However, many of them have other children in them and due to privacy and blah, blah, blah...they are not on here. Here are the photos I can post. Enjoy....
So what have we been up to these last few weeks?
We have gone to downtown Indianapolis and rented a paddle boat on the canal. The photos from that outing.....
(To be read to the same beat as "Five Little Monkeys") Two little monkeys rolling down a hill, one got grass stains on his knee. Momma didn't worry and she didn't fret. She just let them play and frolic with glee.
Where might the photos of the actual paddle boat be, you ask? Well, long story short, paddle boats do not come equipped with seatbelts. Or at least, the paddle boat we rented did not come with them. Between trying to paddle the boat in a semi-sane path of travel through the canal and making certain none of our belongings - to include our backpack and children - fell overboard, conducting a photoshoot fell to the bottom of the priorities list.
Two weekends ago, we went to a USDA certified organic farm to "see the cows." There was not much to see but the man working the tiny little store there was nice enough to walk us out to the barn for the kids to see some calves and the bull. We purchased a few potatoes, sweet potatoes, and onions. We also bought a pound of ground pork and much to my disappointment, they were out of veal at the time. We have a few photos from that little outing but as with so many things in our house, they have gotten lost in the shuffle. Actually, there is a pretty good chance they are still on the camera waiting to be downloaded. Guess I will find out next time I use the camera.
We have also gone to a neurologist appointment, a DAN! appointment, and spent countless hours doing ABA, occupational, and speech therapies.
We had a laugh-so-hard-I-cried moment here on Monday evening. I'm not quite sure why I decided to set up the pool that day, as it was quite cool for a June day but for some reason I asked the kids if they wanted to set it up and (stupid question, huh?) of course they did. It was one of those impulse decisions that was not well thought out at all and coaxing either child into the water meant boiling water in a big pan in the house several times and pouring it into the pool. (Yes, I always make them get out of the water when we pour the boiling water in....give me some credit, will ya?)
Anyway, Reiss had gotten out of the pool and walked around in the grass and the driveway a bit before coming back to the pool and stepping in, only to yell "There's a SNAKE in the pool!" loud enough for the neighbors on the next street to hear. My husband went over to inspect where Reiss was pointing to discover our "snake" was a dried up dead worm that was two inches long if it was a mile. He pulled it out, held it up, and then discarded it into the grass. And then that is when my laughing and snorting and, eventually, the tears began to stream out of me.
As I am sitting here, I just remembered Reiss has also GRADUATED since my last post. Yes, I know, this seems like a rather big thing to forget but in my defense, a lot happens in three weeks and I have slept since then....even if only a little. His graduation produced several adorable photos. However, many of them have other children in them and due to privacy and blah, blah, blah...they are not on here. Here are the photos I can post. Enjoy....
Wednesday, April 7, 2010
Kicking Myself
While we are enjoying the results and benefits of the last three weeks of Reiss receiving ABA (Applied Behavior Analysis) therapy, at the same time, I am kicking myself every day for having not fought more intensely for him to receive such therapy since learning about it more than a year ago.
When I first discovered ABA therapy, I did what I now look back on and think of as a very casual, half-hearted effort to seek ABA therapy as part of our treatment plan for Reiss' autism. After coming up with basically no resources for ABA in our area, I gave up. A few months later, once again, something apparently sparked my interest in seeking out ABA services for Reiss but the only results I came up with at that time were Lovaas and ABA centers that are a one-hour one-way trip from our home.
I didn't want the hassle of being responsible for submitting our own insurance claims that came with Lovaas services and driving a one-hour drive to a center and sitting for four to eight hours while Reiss received therapy was simply out of the question. Laziness has nothing to do with my reluctance to file our own insurance claims. No, my hesitancy stems more from past experiences with insurance companies and how they frequently try to pass the financial responsibility on to the consumer rather than own up to their entire purpose for providing insurance - paying the claims.
Making a one-hour drive to a center was not even something I would have considered doing. It's not that I would not do just about anything to improve Reiss's autism symptoms, but rather, many factors combined to make considering such a trek on a daily basis totally unfeasible. First, I also have Milla to think about. Making such a trek daily when she was barely a year old would have been like packing up our lives every single day so that we could go and sit all day in the parents' area of the center waiting for Reiss to come out. How would that even be fair to a one-year-old? And that's not even considering the factor of inconvenience. Second, Indiana is not the greatest place to be during the winter months. It's not unusual for what is usually a five- or ten-minute drive during warmer months to transform into an hour-long expedition out into the tundra during the winter months. So imagine what an hour-long drive under normal driving conditions translates to in blizzard-like conditions. Not fun. Not to mention, stressful, and somewhat dangerous.
During all this, there was also the question of "How in the world are we going to pay for this?" When your child receives an autism diagnosis, no one hands you a nice little manual on how to proceed after you leave the doctor's office. Most of this stuff you learn by trial and error, talking to other parents of autistic children that you meet along this journey, and by spending countless hours doing your own homework - and God knows that's necessary since no doctor out there is losing sleep over my child or spending his time advocating for him.
Anyway, so it's no surprise that I learned about ABA and then went for months wondering how all the families in these success stories I was reading about could afford ABA for their child(ren). No one ever bothered to mention anything to me about autism mandates or the fact that - regardless of my loathing Indiana winters - my family lives in quite possibly one of the best states in the United States when it comes to having a child with autism and the mandate that entitles my child to insurance coverage for autism treatments.
Depending on the source one consults, a full-time ABA program for a child can cost upwards to $100,000 per year. Yes, that's per year - approximately two times the total median individual (as opposed to a family) income for a resident of the United States and approximately three times the annual cap of $36,000 that many states provide for in their own autism mandates. Luckily, as I later found out, Indiana is not only lucky enough to have an autism mandate, but we also currently do not have any dollar amount caps on the benefits a child can receive annually. At $100K per year (and that's quite a lot more than the average I am finding), or even $36,000 per year for autism treatments alone, it begs the question of why the insurance companies themselves are not calling on politicians to demand funding for further research into autism and its causes....but that's a whole 'nother rant.
It wasn't until early this year when I declared myself to be on a renewed mission of seeking out the best possible routes of treatment for Reiss that I really began paying attention to what the autism mandate meant for us. When I researched it further and learned that basically the mandate states our insurance plan cannot deny ABA services to Reiss, it was like we had won a small victory that I had never really fought very hard to achieve. It was a victory, nonetheless, and when the former director of one of the centers I had previously contacted gave me a call to tell me she and her husband were opening a center on our side of town, I was ecstatic. Little did she know that in the following days the introductions she made possible between myself and another former employee of the same center where she was employed would result in our family getting started with ABA by means of an in-home program, much sooner than her own center was opened.
Do I feel guilty for facilitating Reiss's in-home ABA program with a different individual than the person who was trying to get us onboard as clients in their own facility? No, not really because we may still end up sending Reiss to the center once it opens so that he can continue having social interactions on a regular basis.
Long story long, that is how we arrived where we are today. Reiss is doing an in-home ABA program for around 22 hours per week and we are in Week 4. After school is out for the summer, Reiss will bump up to forty hours per week. If you are not familiar with ABA, this probably sounds like a grueling schedule to keep, especially for a child who isn't even five years old. However, ABA therapy is very play-oriented in its teaching techniques. Reiss generally runs three to five "programs" and then gets a free period in which he can choose the activity he wishes to do for the duration of his break until the next set of programs.
The results we have seen so far are amazing.
We are experiencing many less tantrums.
Now, unlike before ABA, Reiss sometimes gets water or something on his shirt and there is no meltdown. Sometimes, in these instances, my husband and I find ourselves looking at one another while both of us are thinking, "Okay, where is the tantrum? Is it coming and is just delayed?" But it never comes and we are shocked and amazed.
Car rides are actually enjoyable - something I have never - post children -been able to say prior to now. Reiss and Milla sit. And they are often quiet. No screaming. No stressing me out to a point where a three minute car ride is like enduring a non-medicated root canal. And at the risk of jinxing myself, I will even go so far to say they often watch DVD's while in the car, as in, they actually pay attention to them.
And discipline....oh, where do I begin? Prior to ABA, nothing and I really mean nothing has ever proven effective with Reiss for any given amount of time. Timeouts were the worst. Sending him to his room was like a reward. Reward systems meant nothing to him. Positive reinforcement was like a permission slip to follow his good deeds with an undesirable behavior. If parents of typical children thinks it's difficult trying to discipline a child, they have no clue what it's like for many parents of autistic children. These children simply think and process things differently - and that's not my opinion, it's a fact.
Reiss is writing and drawing and - I don't even know how to word this to give it the magnitude it deserves - recognizing written words. I would venture to say he is reading. Reading by rote memory recognition of words used repeatedly in visuals with his ABA programs, but reading, all the same.
The most amazing thing though, is that Reiss is actually initiating conversations - no, wait, I mean meaningful conversations with people. He is asking people their names, their middle names, last names, birth dates. Before ABA, Reiss barely noticed the existence of other people around him, much less engage in conversational speech with them.
With ABA, I feel like we have our sanity back. Literally.
Finally arriving where we have has been quite a lesson in researching our options and digging for that information that no one is going to spoon-feed us. The whole process has left me wondering why we didn't get ABA for Reiss much sooner - at any cost or inconvenience or whatever. But I know the answer to that - I just didn't put up enough of a fight.
And while the ABA is costing us an arm and a leg, even with insurance coverage, that sanity isn't something one can put a pricetag on.
I can just see the commercial for ABA....
Autism: Your child's ability to develop "normally" out the window.
Effects autism has on a family: Feelings of isolation and lack of others who understand and can relate.
Treatments for autism: More money than any average person makes in a year.
ABA: Too darn much.
Getting one's sanity back after ABA: Priceless.
When I first discovered ABA therapy, I did what I now look back on and think of as a very casual, half-hearted effort to seek ABA therapy as part of our treatment plan for Reiss' autism. After coming up with basically no resources for ABA in our area, I gave up. A few months later, once again, something apparently sparked my interest in seeking out ABA services for Reiss but the only results I came up with at that time were Lovaas and ABA centers that are a one-hour one-way trip from our home.
I didn't want the hassle of being responsible for submitting our own insurance claims that came with Lovaas services and driving a one-hour drive to a center and sitting for four to eight hours while Reiss received therapy was simply out of the question. Laziness has nothing to do with my reluctance to file our own insurance claims. No, my hesitancy stems more from past experiences with insurance companies and how they frequently try to pass the financial responsibility on to the consumer rather than own up to their entire purpose for providing insurance - paying the claims.
Making a one-hour drive to a center was not even something I would have considered doing. It's not that I would not do just about anything to improve Reiss's autism symptoms, but rather, many factors combined to make considering such a trek on a daily basis totally unfeasible. First, I also have Milla to think about. Making such a trek daily when she was barely a year old would have been like packing up our lives every single day so that we could go and sit all day in the parents' area of the center waiting for Reiss to come out. How would that even be fair to a one-year-old? And that's not even considering the factor of inconvenience. Second, Indiana is not the greatest place to be during the winter months. It's not unusual for what is usually a five- or ten-minute drive during warmer months to transform into an hour-long expedition out into the tundra during the winter months. So imagine what an hour-long drive under normal driving conditions translates to in blizzard-like conditions. Not fun. Not to mention, stressful, and somewhat dangerous.
During all this, there was also the question of "How in the world are we going to pay for this?" When your child receives an autism diagnosis, no one hands you a nice little manual on how to proceed after you leave the doctor's office. Most of this stuff you learn by trial and error, talking to other parents of autistic children that you meet along this journey, and by spending countless hours doing your own homework - and God knows that's necessary since no doctor out there is losing sleep over my child or spending his time advocating for him.
Anyway, so it's no surprise that I learned about ABA and then went for months wondering how all the families in these success stories I was reading about could afford ABA for their child(ren). No one ever bothered to mention anything to me about autism mandates or the fact that - regardless of my loathing Indiana winters - my family lives in quite possibly one of the best states in the United States when it comes to having a child with autism and the mandate that entitles my child to insurance coverage for autism treatments.
Depending on the source one consults, a full-time ABA program for a child can cost upwards to $100,000 per year. Yes, that's per year - approximately two times the total median individual (as opposed to a family) income for a resident of the United States and approximately three times the annual cap of $36,000 that many states provide for in their own autism mandates. Luckily, as I later found out, Indiana is not only lucky enough to have an autism mandate, but we also currently do not have any dollar amount caps on the benefits a child can receive annually. At $100K per year (and that's quite a lot more than the average I am finding), or even $36,000 per year for autism treatments alone, it begs the question of why the insurance companies themselves are not calling on politicians to demand funding for further research into autism and its causes....but that's a whole 'nother rant.
It wasn't until early this year when I declared myself to be on a renewed mission of seeking out the best possible routes of treatment for Reiss that I really began paying attention to what the autism mandate meant for us. When I researched it further and learned that basically the mandate states our insurance plan cannot deny ABA services to Reiss, it was like we had won a small victory that I had never really fought very hard to achieve. It was a victory, nonetheless, and when the former director of one of the centers I had previously contacted gave me a call to tell me she and her husband were opening a center on our side of town, I was ecstatic. Little did she know that in the following days the introductions she made possible between myself and another former employee of the same center where she was employed would result in our family getting started with ABA by means of an in-home program, much sooner than her own center was opened.
Do I feel guilty for facilitating Reiss's in-home ABA program with a different individual than the person who was trying to get us onboard as clients in their own facility? No, not really because we may still end up sending Reiss to the center once it opens so that he can continue having social interactions on a regular basis.
Long story long, that is how we arrived where we are today. Reiss is doing an in-home ABA program for around 22 hours per week and we are in Week 4. After school is out for the summer, Reiss will bump up to forty hours per week. If you are not familiar with ABA, this probably sounds like a grueling schedule to keep, especially for a child who isn't even five years old. However, ABA therapy is very play-oriented in its teaching techniques. Reiss generally runs three to five "programs" and then gets a free period in which he can choose the activity he wishes to do for the duration of his break until the next set of programs.
The results we have seen so far are amazing.
We are experiencing many less tantrums.
Now, unlike before ABA, Reiss sometimes gets water or something on his shirt and there is no meltdown. Sometimes, in these instances, my husband and I find ourselves looking at one another while both of us are thinking, "Okay, where is the tantrum? Is it coming and is just delayed?" But it never comes and we are shocked and amazed.
Car rides are actually enjoyable - something I have never - post children -been able to say prior to now. Reiss and Milla sit. And they are often quiet. No screaming. No stressing me out to a point where a three minute car ride is like enduring a non-medicated root canal. And at the risk of jinxing myself, I will even go so far to say they often watch DVD's while in the car, as in, they actually pay attention to them.
And discipline....oh, where do I begin? Prior to ABA, nothing and I really mean nothing has ever proven effective with Reiss for any given amount of time. Timeouts were the worst. Sending him to his room was like a reward. Reward systems meant nothing to him. Positive reinforcement was like a permission slip to follow his good deeds with an undesirable behavior. If parents of typical children thinks it's difficult trying to discipline a child, they have no clue what it's like for many parents of autistic children. These children simply think and process things differently - and that's not my opinion, it's a fact.
Reiss is writing and drawing and - I don't even know how to word this to give it the magnitude it deserves - recognizing written words. I would venture to say he is reading. Reading by rote memory recognition of words used repeatedly in visuals with his ABA programs, but reading, all the same.
The most amazing thing though, is that Reiss is actually initiating conversations - no, wait, I mean meaningful conversations with people. He is asking people their names, their middle names, last names, birth dates. Before ABA, Reiss barely noticed the existence of other people around him, much less engage in conversational speech with them.
With ABA, I feel like we have our sanity back. Literally.
Finally arriving where we have has been quite a lesson in researching our options and digging for that information that no one is going to spoon-feed us. The whole process has left me wondering why we didn't get ABA for Reiss much sooner - at any cost or inconvenience or whatever. But I know the answer to that - I just didn't put up enough of a fight.
And while the ABA is costing us an arm and a leg, even with insurance coverage, that sanity isn't something one can put a pricetag on.
I can just see the commercial for ABA....
Autism: Your child's ability to develop "normally" out the window.
Effects autism has on a family: Feelings of isolation and lack of others who understand and can relate.
Treatments for autism: More money than any average person makes in a year.
ABA: Too darn much.
Getting one's sanity back after ABA: Priceless.
Wednesday, March 17, 2010
No, I Have Not Gone Missing In Action
But one might thing so considering this is the longest stint I've gone without posting something since I began blogging last year.
Wherever shall I begin? So much has gone on in the last few weeks that I barely remember a lot of it. I suppose I will just begin with the most exciting parts.
Yesterday we started ABA with Reiss!!!!! Yes, this is very exciting news and hence, the exclamation points. It is not only exciting because of the spectacular results we have seen in only two days of therapy, but also because we have been waiting for what seems like an eternity for the therapy itself to begin. Long story short, we went with a BCBA (Board Certified Behavior Analyst) who used to work in an ABA center and then left the center to go out on her own and create in-home ABA therapy programs for children. Because she is relatively new to being out on her own, she is still building up her group of therapists she employs to go out and do the actual therapies.
Today was Day 2 and already I feel like I have learned so much simply by giving all control to the therapists and watching how they handle particular situations. Last night was probably the most "normal" evening we have had since Reiss was born. We sat. We ate dinner. Everyone was calm. I actually feel like it may be the first time I was able to relax in close to five years. And breathe.......I got to breathe without feeling like the weight of the world was on my shoulders from caring for a child who can go from zero to all-out ear-piercing repetitive screaming in 4 milliseconds.
For the first time ever, Reiss is saying "I'm sorry" when he does something wrong, like screaming at someone for no reason. Granted, he does have to be prompted to say it and he does hesitate but he's doing it! And without having to be carried kicking, hitting, screaming, and biting on the way to the timeout chair to sit for a spell for not doing as he is told.
All of it is just totally amazing! It's like a friend of mine says, "I don't know what they're doing but it WORKS!" Actually, I do understand what they are doing and much of it seems so simple, it is like we have been doing much of it all along - now it's simply in a more organized and purposeful way. Needless to say, I think this is going to be a very good thing for Reiss and our entire family.
So much more has happened around here but I really must figure out what to have for dinner besides roast. Until next time.....
Wherever shall I begin? So much has gone on in the last few weeks that I barely remember a lot of it. I suppose I will just begin with the most exciting parts.
Yesterday we started ABA with Reiss!!!!! Yes, this is very exciting news and hence, the exclamation points. It is not only exciting because of the spectacular results we have seen in only two days of therapy, but also because we have been waiting for what seems like an eternity for the therapy itself to begin. Long story short, we went with a BCBA (Board Certified Behavior Analyst) who used to work in an ABA center and then left the center to go out on her own and create in-home ABA therapy programs for children. Because she is relatively new to being out on her own, she is still building up her group of therapists she employs to go out and do the actual therapies.
Today was Day 2 and already I feel like I have learned so much simply by giving all control to the therapists and watching how they handle particular situations. Last night was probably the most "normal" evening we have had since Reiss was born. We sat. We ate dinner. Everyone was calm. I actually feel like it may be the first time I was able to relax in close to five years. And breathe.......I got to breathe without feeling like the weight of the world was on my shoulders from caring for a child who can go from zero to all-out ear-piercing repetitive screaming in 4 milliseconds.
For the first time ever, Reiss is saying "I'm sorry" when he does something wrong, like screaming at someone for no reason. Granted, he does have to be prompted to say it and he does hesitate but he's doing it! And without having to be carried kicking, hitting, screaming, and biting on the way to the timeout chair to sit for a spell for not doing as he is told.
All of it is just totally amazing! It's like a friend of mine says, "I don't know what they're doing but it WORKS!" Actually, I do understand what they are doing and much of it seems so simple, it is like we have been doing much of it all along - now it's simply in a more organized and purposeful way. Needless to say, I think this is going to be a very good thing for Reiss and our entire family.
So much more has happened around here but I really must figure out what to have for dinner besides roast. Until next time.....
Friday, March 5, 2010
Where ARE You, Supernanny???
Today has been one of those days where the suggestion of having a lock on the outside of my son's door no longer seems like a joke amongst a group of moms discussing their children but like a really great idea.
Not so long ago, Reiss and Milla and I used to go to a group gathering on Friday mornings at a local church. All the mothers would share some fellowship while our children played in an adjoining room. Quite often the conversation would turn to discussing our children and the funny things they had done recently and sometimes the not-so-funny problems of disciplining children. A few of these moms told me, in all seriousness, that they had switched the door handles on their child's room to make it so the lock was on the outside of the door. I used to laugh at such a notion....
No more.
ABA therapy cannot begin soon enough for us. I was hoping it would have already begun but unfortunately, we do not have enough therapists lined up yet. Actually, there's a little more to it than that but that's the long and short of it. We should be up and running within the next two weeks. If not, my sanity may not last.
Some days we have these really great days and then other days are just maddening beyond belief. We have already started going to a social skills group associated with the ABA group we are using and Reiss does really awesome there and pays attention fairly well to the other kids' therapists who take charge of the group. Once we are up and running with our own in-home ABA program, our therapist will go with us to the group as well. Until then, I take Reiss and Milla and he has to do what the other therapists tell him to do.
Yesterday was quite interesting. We went to the social skills group. Reiss behaved pretty well but did have his moments of non-compliance. When he gets a timeout with the ABA therapists, he is generally very compliant and does his "time for the crime." Overall, yesterday was no different, with the exception of one instance where Reiss put up a bit of a fuss before his timeout. The therapist wasn't having it and seconds later, Reiss was sitting quietly in a timeout.
Fast forward to about an hour later when we got home and he did something to get a timeout here and being the observer I've learned very quickly to be, I did everything exactly as the ABA therapists, only to be met with a four-year-old putting up a fight equivocal to that of maybe someone three times his size just getting him over to the designated timeout area.
Seriously, I don't understand what I am doing wrong. I can do everything exactly the same (or, at least, I'm pretty certain it's exactly the same) as the ABA therapists, even down to the detail of showing no emotion. However, what works like magic for them most often results in kicking, screaming, pinching, hitting, and total lack of cooperation to sit in the timeout area. Reiss will sit quietly in a timeout for therapists and for his teacher at school a lot of times, yet I can't even get him to stay in the same place in a timeout when restrained in a booster seat. The only way to keep him in one place for a timeout at home is to put him in a booster seat that has buckles on it and also to restrain the booster seat to something else so that it cannot move. We have, well had - we need to refasten the straps - our booster seat sitting on the floor for safety and strapped to the posts that make up the railing around our stairs leading to the basement.
If it doesn't sound safe, I can assure you it is safe. There is no way Reiss can fall over, strangle himself, fall down the stairs, or whatever else anyone may be thinking. And just a note for anyone who may be thinking of calling Child Protective Services on me, I've checked, this is not only safe but actually what is recommended for keeping a child safe during a period of timeout.
I just keep thinking if my sanity can last until the ABA begins, we will all be fine. Reiss took non-compliance to a new level today. He peed in his pants twice. He pooped in his pants three times. He went through several pairs of pants and then fussed and complained and harassed me endlessly for two hours about how he has no pants that fit him. His ideal pants are Goodwill purhased, been through who knows how many children, faded beyond belief jeans....or home pants, as he calls them.
Now, I have nothing against secondhand clothes - they are practically all I grew up with and I still continue to buy from Goodwill occasionally when I can find something I like. However, for Reiss to say that he has no pants that fit him is simply ludicrous considering the fact that his size 4 and size 5 wardrobe has been complete since before he was even three years old, due to the fact that I exclusively buy him Gymboree clothing when it is out of season and on clearance and during Gymbucks earning and redemption periods and with coupons and using my Gymboree Visa and Gymboree Rewards program and on and on and on.....my method for getting Gymboree clothes for next to no money out of pocket is a whole 'nother post all its own and I won't bore anyone with that sort of thing today.
Needless to say, it breaks my heart when I see several pairs of excellent quality size 4 Gymboree jeans with those little marked down pricetags still hanging from them getting pushed to the far reaches of Reiss's closet all while he complains about having no home pants clean because all his crappy Goodwill jeans that cost more than the Gymboree jeans are dirty because he either pooped or peed in them.
And all this going on while Milla is trying to take a nap and keeping him at a low roar is like getting an elephant to tread lightly on a glass roof....
So going back to my original question....
Where ARE you, Supernanny???
Of all the lucrative ideas people have come up with to swindle parents of children with autism out of their dwindling financial resources, why hasn't someone come up with the idea of being a Supernanny-type professional exclusively for children with autism? Now that would be someone I would hire...
Not so long ago, Reiss and Milla and I used to go to a group gathering on Friday mornings at a local church. All the mothers would share some fellowship while our children played in an adjoining room. Quite often the conversation would turn to discussing our children and the funny things they had done recently and sometimes the not-so-funny problems of disciplining children. A few of these moms told me, in all seriousness, that they had switched the door handles on their child's room to make it so the lock was on the outside of the door. I used to laugh at such a notion....
No more.
ABA therapy cannot begin soon enough for us. I was hoping it would have already begun but unfortunately, we do not have enough therapists lined up yet. Actually, there's a little more to it than that but that's the long and short of it. We should be up and running within the next two weeks. If not, my sanity may not last.
Some days we have these really great days and then other days are just maddening beyond belief. We have already started going to a social skills group associated with the ABA group we are using and Reiss does really awesome there and pays attention fairly well to the other kids' therapists who take charge of the group. Once we are up and running with our own in-home ABA program, our therapist will go with us to the group as well. Until then, I take Reiss and Milla and he has to do what the other therapists tell him to do.
Yesterday was quite interesting. We went to the social skills group. Reiss behaved pretty well but did have his moments of non-compliance. When he gets a timeout with the ABA therapists, he is generally very compliant and does his "time for the crime." Overall, yesterday was no different, with the exception of one instance where Reiss put up a bit of a fuss before his timeout. The therapist wasn't having it and seconds later, Reiss was sitting quietly in a timeout.
Fast forward to about an hour later when we got home and he did something to get a timeout here and being the observer I've learned very quickly to be, I did everything exactly as the ABA therapists, only to be met with a four-year-old putting up a fight equivocal to that of maybe someone three times his size just getting him over to the designated timeout area.
Seriously, I don't understand what I am doing wrong. I can do everything exactly the same (or, at least, I'm pretty certain it's exactly the same) as the ABA therapists, even down to the detail of showing no emotion. However, what works like magic for them most often results in kicking, screaming, pinching, hitting, and total lack of cooperation to sit in the timeout area. Reiss will sit quietly in a timeout for therapists and for his teacher at school a lot of times, yet I can't even get him to stay in the same place in a timeout when restrained in a booster seat. The only way to keep him in one place for a timeout at home is to put him in a booster seat that has buckles on it and also to restrain the booster seat to something else so that it cannot move. We have, well had - we need to refasten the straps - our booster seat sitting on the floor for safety and strapped to the posts that make up the railing around our stairs leading to the basement.
If it doesn't sound safe, I can assure you it is safe. There is no way Reiss can fall over, strangle himself, fall down the stairs, or whatever else anyone may be thinking. And just a note for anyone who may be thinking of calling Child Protective Services on me, I've checked, this is not only safe but actually what is recommended for keeping a child safe during a period of timeout.
I just keep thinking if my sanity can last until the ABA begins, we will all be fine. Reiss took non-compliance to a new level today. He peed in his pants twice. He pooped in his pants three times. He went through several pairs of pants and then fussed and complained and harassed me endlessly for two hours about how he has no pants that fit him. His ideal pants are Goodwill purhased, been through who knows how many children, faded beyond belief jeans....or home pants, as he calls them.
Now, I have nothing against secondhand clothes - they are practically all I grew up with and I still continue to buy from Goodwill occasionally when I can find something I like. However, for Reiss to say that he has no pants that fit him is simply ludicrous considering the fact that his size 4 and size 5 wardrobe has been complete since before he was even three years old, due to the fact that I exclusively buy him Gymboree clothing when it is out of season and on clearance and during Gymbucks earning and redemption periods and with coupons and using my Gymboree Visa and Gymboree Rewards program and on and on and on.....my method for getting Gymboree clothes for next to no money out of pocket is a whole 'nother post all its own and I won't bore anyone with that sort of thing today.
Needless to say, it breaks my heart when I see several pairs of excellent quality size 4 Gymboree jeans with those little marked down pricetags still hanging from them getting pushed to the far reaches of Reiss's closet all while he complains about having no home pants clean because all his crappy Goodwill jeans that cost more than the Gymboree jeans are dirty because he either pooped or peed in them.
And all this going on while Milla is trying to take a nap and keeping him at a low roar is like getting an elephant to tread lightly on a glass roof....
So going back to my original question....
Where ARE you, Supernanny???
Of all the lucrative ideas people have come up with to swindle parents of children with autism out of their dwindling financial resources, why hasn't someone come up with the idea of being a Supernanny-type professional exclusively for children with autism? Now that would be someone I would hire...
Tuesday, March 2, 2010
And The World Stopped......
Lin (Linda) Wessels is a friend of mine on facebook. Her son, Sam, has autism and, just like I am, Lin is an "autism mom." Her family's story is about to be told to the world in the form of a documentary being made by the United States of Autism.
You can read a small tidbit about her family in THIS article with KPTH Fox News. I love the phrase mentioned in the article that Lin used to describe the world from where she was sitting when she received Sam's diagnosis: "...we have your diagnosis and it is autism. And the world stopped..."
Because that is exactly what happens when your child receives an autism diagnosis. The world stops spinning and your whole life becomes a marathon of what-can-I-do-to-help-my-child? Autism doesn't sleep (literally and figuratively, with a lot of children!) and it doesn't take a break or a vacation. It creeps into every single aspect of life in not only the child with autism, but into the lives of his or her family. I wish I could explain this to people so they understand because it is not something anyone can even fathom until they walk down that road.
Enough of my blathering.....go VOTE. And if you are wondering what I mean when I tell you to go vote, first go read the article....then VOTE!!!!
You can read a small tidbit about her family in THIS article with KPTH Fox News. I love the phrase mentioned in the article that Lin used to describe the world from where she was sitting when she received Sam's diagnosis: "...we have your diagnosis and it is autism. And the world stopped..."
Because that is exactly what happens when your child receives an autism diagnosis. The world stops spinning and your whole life becomes a marathon of what-can-I-do-to-help-my-child? Autism doesn't sleep (literally and figuratively, with a lot of children!) and it doesn't take a break or a vacation. It creeps into every single aspect of life in not only the child with autism, but into the lives of his or her family. I wish I could explain this to people so they understand because it is not something anyone can even fathom until they walk down that road.
Enough of my blathering.....go VOTE. And if you are wondering what I mean when I tell you to go vote, first go read the article....then VOTE!!!!
Tuesday, February 23, 2010
IEP's, Dinner For Dummies, and Other Ramblings
This evening my husband and I have a meeting to go to regarding the ABA center we are helping another couple get started. Actually, that makes it sound like we are playing some major role in the opening of a fabulous ABA facility but in reality, all we are doing is providing word of mouth to others in the autism community and a place for the couple to hold their presentations to get families interested in their center.
I'm very excited about it all but I'm also very tired. We have been going and going and going for around two weeks now and I just want a nap.
This morning was Reiss's case conference for his IEP and I gotta say, it wasn't nearly as bad as some of the nightmare stories I hear from friends who go in with a "team" of people ready to do battle. Of course, I don't have the same problems many of them have. We do have problems with Reiss running out of the classroom on occasion but luckily, it has not been out the door leading to the parking lot, but rather, the door leading out of his classroom and into the hall. We don't have problems - that I am aware of - with his teacher or aides giving him food that is not on his diet. And since we provide a box of snacks for him from home, they would have no reason to do so. We don't have problems with unfair punishments or have to deal with forms of discipline that some consider torture like so many parents of children with autism have to read about. Yes, it really happens...just look HERE if you don't believe me. By the way, that particular school system is notorious for incidents with their students in special services classrooms. Not long ago they also had one little girl with autism who was bitten in the classroom and force fed. I am, however, too lazy to go dig up a link for that as well though. So have at it, go Google yourself silly if you so desire.
Anyway, the only changes we made were to have Reiss's IEP written to include his dietary guidelines and his Diastat injector - just in case of another seizure - under the Health guidelines section. Because they have been having some behavioral problems in the classroom recently, there were also some behavioral modification plans made to accommodate for when Reiss fully rejects their current form of discipline, which is a combination of popsicle stick pocket pulls, 1-2-3 Magic, and timeouts. It sounds like a lot but it's basically 1-2-3 Magic adapted to a classroom setting. His teacher feels it is only effective for him a small part of the time and we will soon need to move on. It's amazing how this is exactly what she told me usually happens around mid-way through the year with the majority of the children, and although this is a little past midway, she was exactly right.
Moving on...
Today I made muffins. THIS is the recipe I used, as I often do. This recipe should have been more aptly name No-Fail Muffins or Muffins for Morons because it is so darn adaptable. These muffins simply cannot go wrong. They call for applesauce but I have also substituted the applesauce with bananas, zucchini, squash, and pumpkin, all with spectacular results. Today's applesauce sub was zucchini. They're so well-packed with good fats, proteins, and fiber that I don't even have an inkling of remorse serving these for a meal with a little fruit or something on the side. Because we have to get dinner on the table and out the door in a hurry this evening, we are having these muffins, some bacon, and whatever fruit we have on hand. I think there are some pears and apples that need to get gone, as well as some kiwis that Reiss will probably hoard all to himself.
Today we had carpet installed in our bedroom. I know, I know - don't tell me about all the harmful crap they put in that stuff. We purchased this carpet around a year ago when we had just begun making dietary changes, getting chemicals out of the house (we're still working on that one!), and frankly, we were just plain ignorant. If I knew then what I know now, we would have gone with running the wood laminate floors on into the bedroom or gone with a "green" carpet free of chemicals. What's the saying? Hindsight is 20/20 and considering the expense, it's not something we were going to just cut our losses and chalk up to experience.
After nearly a year straight of off and on (a lot of "on") people working on this or that in our house, I am ready to take a break. I am ready to close our doors and not have anyone work for us anytime soon. Ironically, we are getting ready to start our in-home ABA program and there will be people in and out of here every single day and for even more hours than all the remodeling projects put together but at least these are people working on a totally different aspect of our lives and not on our house and leaving messes in their wake when they leave for the day.
Thankfully, you can barely tell anymore that this is a 1974-built house. Other than the main bathroom, every room on this floor has been totally updated or had major modifications made to it to bring it into this decade from a decorative standpoint.
These monkeys are waking up from a nap. Reiss conked out on the chair in here during a phone call I was on earlier and Milla is on the couch. If you have read this far and are not bored to tears, I'm not sure whether to applaud your ability to focus or feel sorrow that you must have a really boring life that you could find my ramblings and my own mundane life ventures entertaining. At any rate, thank you for reading and leave a comment if you feel so inclined - I do read them and very much appreciate them, even if I don't acknowledge them as often as I would like.
I'm very excited about it all but I'm also very tired. We have been going and going and going for around two weeks now and I just want a nap.
This morning was Reiss's case conference for his IEP and I gotta say, it wasn't nearly as bad as some of the nightmare stories I hear from friends who go in with a "team" of people ready to do battle. Of course, I don't have the same problems many of them have. We do have problems with Reiss running out of the classroom on occasion but luckily, it has not been out the door leading to the parking lot, but rather, the door leading out of his classroom and into the hall. We don't have problems - that I am aware of - with his teacher or aides giving him food that is not on his diet. And since we provide a box of snacks for him from home, they would have no reason to do so. We don't have problems with unfair punishments or have to deal with forms of discipline that some consider torture like so many parents of children with autism have to read about. Yes, it really happens...just look HERE if you don't believe me. By the way, that particular school system is notorious for incidents with their students in special services classrooms. Not long ago they also had one little girl with autism who was bitten in the classroom and force fed. I am, however, too lazy to go dig up a link for that as well though. So have at it, go Google yourself silly if you so desire.
Anyway, the only changes we made were to have Reiss's IEP written to include his dietary guidelines and his Diastat injector - just in case of another seizure - under the Health guidelines section. Because they have been having some behavioral problems in the classroom recently, there were also some behavioral modification plans made to accommodate for when Reiss fully rejects their current form of discipline, which is a combination of popsicle stick pocket pulls, 1-2-3 Magic, and timeouts. It sounds like a lot but it's basically 1-2-3 Magic adapted to a classroom setting. His teacher feels it is only effective for him a small part of the time and we will soon need to move on. It's amazing how this is exactly what she told me usually happens around mid-way through the year with the majority of the children, and although this is a little past midway, she was exactly right.
Moving on...
Today I made muffins. THIS is the recipe I used, as I often do. This recipe should have been more aptly name No-Fail Muffins or Muffins for Morons because it is so darn adaptable. These muffins simply cannot go wrong. They call for applesauce but I have also substituted the applesauce with bananas, zucchini, squash, and pumpkin, all with spectacular results. Today's applesauce sub was zucchini. They're so well-packed with good fats, proteins, and fiber that I don't even have an inkling of remorse serving these for a meal with a little fruit or something on the side. Because we have to get dinner on the table and out the door in a hurry this evening, we are having these muffins, some bacon, and whatever fruit we have on hand. I think there are some pears and apples that need to get gone, as well as some kiwis that Reiss will probably hoard all to himself.
Today we had carpet installed in our bedroom. I know, I know - don't tell me about all the harmful crap they put in that stuff. We purchased this carpet around a year ago when we had just begun making dietary changes, getting chemicals out of the house (we're still working on that one!), and frankly, we were just plain ignorant. If I knew then what I know now, we would have gone with running the wood laminate floors on into the bedroom or gone with a "green" carpet free of chemicals. What's the saying? Hindsight is 20/20 and considering the expense, it's not something we were going to just cut our losses and chalk up to experience.
After nearly a year straight of off and on (a lot of "on") people working on this or that in our house, I am ready to take a break. I am ready to close our doors and not have anyone work for us anytime soon. Ironically, we are getting ready to start our in-home ABA program and there will be people in and out of here every single day and for even more hours than all the remodeling projects put together but at least these are people working on a totally different aspect of our lives and not on our house and leaving messes in their wake when they leave for the day.
Thankfully, you can barely tell anymore that this is a 1974-built house. Other than the main bathroom, every room on this floor has been totally updated or had major modifications made to it to bring it into this decade from a decorative standpoint.
These monkeys are waking up from a nap. Reiss conked out on the chair in here during a phone call I was on earlier and Milla is on the couch. If you have read this far and are not bored to tears, I'm not sure whether to applaud your ability to focus or feel sorrow that you must have a really boring life that you could find my ramblings and my own mundane life ventures entertaining. At any rate, thank you for reading and leave a comment if you feel so inclined - I do read them and very much appreciate them, even if I don't acknowledge them as often as I would like.
Thursday, February 18, 2010
And On A More Positive Note....
It felt good to vent a bit on Tuesday but lest anyone think all I do is complain about autism, I figure anyone spending any amount of their time reading my blog deserves to hear some good news as well. You know, to equal things out. Here are some of the breakthroughs we have witnessed with Reiss over the last (nearly) year and a half since we began dietary restrictions and supplements:
Regarding speech......
Although Reiss has been quite verbal since beginning communication with speech as a toddler, his speech wasn't always functional. His speech seemed a tad delayed, then it took off, and then he started losing some of it. At around eighteen months of age, he used to do the cutest thing. He would say, "Awesome!" and do a little fist pump into the air. Soon after, he stopped doing it. As the months passed, this wasn't the only thing he lost, it was simply the most memorable.
Reiss wouldn't talk a whole lot except to repeat things. Engaging in a conversation with him was non-existent. He had a lot of repetitive speech (echolalia). He had pronomial confusion - he confused I, you, me, and the possessive forms as well. For example, he might have said, "You want the waffle." but what he really meant was that he wanted the waffle. He could not answer a simple "yes" or "no" question, nor any type of who, what, when, why, or where questions. And he definitely couldn't ask any questions. At all. We never went through the "Why? Why? Why?" phase with Reiss that most parents complain about with their children during the toddler years.
The way it was explained to us by the special services school officials who evaluated Reiss for entrance into developmental preschool, many of these kids don't even understand that a question is being asked and that a response is expected. It doesn't matter that a typical person changes the inflection when asking a question, children with autism many times just don't understand. And that explains why I used to have to tell Reiss "I need a yes or a no, please." when asking him that type of question. Still, often times, he would reply with whatever pleased him and not necessarily the correct answer. I think he knew I was getting frustrated and he was just as frustrated and figured any answer would shut me up.
If something hurt, Reiss could not tell us it hurt. He could not tell us what happened if something got hurt when we had our heads turned and didn't see him fall or bump his head or stub his toe. One can only imagine how frustrating and heartbreaking it was when Reiss, at 28 months old and on the day before I was scheduled to have a c-section for Milla, hurt his leg going down a slide and couldn't walk. We knew something was wrong with his leg but he couldn't tell us exactly where it hurt. Pointing to things to try to find the source of pain was, well, pointless. We would point to his ankle and ask if it hurt and he would nod his head. We would point to his knee and ask if it hurt and he would nod his head. We would then point to say, his nose and ask if it hurt and once again, he would nod his head. That entire incident was about $3000 worth of medical bills and a leg cast for several weeks, only to be told by the doctors that they were certain his leg was not broken but otherwise, had no clue why he would/could not walk on it. (And people wonder why I have so little faith in the majority of medical professionals. This is only one example of why, but I promise, I'll save that tangent for another day.) Within a few days of getting the cast, Reiss was walking again but still couldn't tell us what hurt.
After only a few weeks of being on a gluten-free, casein-free diet, Reiss's language in terms of functionality grew by leaps and bounds. He was answering questions more and more as the days passed. He seemed to better understand the dynamics of speech and how it could get him what he wanted. There are times when Reiss still has some issues with holding a conversation but he can certainly answer just about any type of question now. "Why" questions seem to be the most difficult for him but he will sometimes make up an answer - even if an illogical one. If it means I get an answer when I ask a question, rather than a blank stare, I'll take it!
Regarding sensory hyper-sensitivity.....
My most vivid memories of Reiss having hyper-sensitive senses are of the many, many months where he would just bawl his little eyes out if the phone rang. The vacuum cleaner seemed to be torturous to him. If a door was closed, not even slammed, the poor little guy was ready to jump out of his skin. He would stare at lights and giggle. Car rides were painful...for everyone involved. A simple ten minute ride from Point A to Point B almost always ended in an hour of trying to console our poor baby. We didn't know then that all of these were exactly what they seemed to be for him: way too much sensory overload for him to handle. I remember a particular family member chastising me for keeping the phone off the hook during naptimes and also for not wanting to go anywhere that required a long (in which, "long" consisted of anything more than fifteen minutes) drive. I was told, "Well, he needs to get used to it!" as if forcing him into these situations of enduring the phone ringing or riding around in the car or whatever else would somehow eventually ease the real pain going on in his little body.
Reiss did begin to very, very slowly outgrow most of these things but still, until we began dietary changes, rides in the car were not fun for anyone and the pain of hearing the vacuum cleaner was just simply too much for him. These days, Reiss loves to run the vacuum cleaner himself. Car rides are much easier, although I cannot say they are much quieter. However, the difference now is that it's a more joyful noise on most occasions.
Regarding sleep.....
Most people don't believe me when I tell them about Reiss's sleeping habits as a baby and on into toddler-hood. Occasionally, even other parents of children with autism don't believe me because sleep was not an issue with their child with ASD. But here it is and it is the honest to God's truth and it takes another parent who has been through it to fully comprehend that it really can be this bad.
Having been in the military and gone through Basic Training, I thought I knew sleep deprivation. Until Reiss came along though, I was clueless. Reiss never slept through the night until he was three-and-a-half years old. No, really, I'm serious - not ever, not even one time. And yes, I'm aware that the so-called experts consider six hours of straight sleep for an infant is considered "sleeping through the night." As a baby and up until he was around nine months old, Reiss would wake every fifteen to forty-five minutes, all through the night. I remember telling people this and they would think I was exaggerating. I always got the ol' "It will get better in a few months." answer. But it didn't get better. And of course they thought I was exaggerating - that simply is not a typical sleep pattern for an infant. But I didn't know that then. Well, I did know that but everyone told me I must be exaggerating so naturally, I just thought that it must be that bad with all infants and I was just being a wimpy new mommy. I also remember thinking that I didn't know why anyone would ever want more than one child. How would they ever get any sleep again?
Around the time Reiss was eight or nine months old and I was nearing the end of my rope due to total and complete sleep deprivation, I decided to let Reiss co-sleep with us. Co-sleeping improved his sleep habits but they were still very poor for a child of nine months. By then, he was still waking just about every hour. There were times when he didn't wake but he would laugh hysterically in his sleep. (You parents of children with autism, you know what I'm talking about and you also know that it probably seemed cute and adorable at one time but is now a nightmare come true if your child still does it.) If I was able to drop-off into a deep sleep for only two hours before he woke, I considered myself extremely lucky.
Reiss's constant waking continued for months and months. And years. He had begun sleeping in a toddler bed but was still waking quite often and many times in a state of ear-piercing screams and was unable to be consoled. Sometimes the "waking" when he was screaming those horrible screams was not him waking, but most likely night terrors, in which he was still technically asleep.
If you don't believe what I told you about Reiss's sleep habits before we began a GFCF (gluten-free, casein-free) diet, you almost certainly won't believe what happened after we began eating this way. The very first night after eating this way for an entire day, Reiss slept through the night, all night, without a single wakeup. I knew this diet was going to be a real pain for us and it created even more challenges of its own (as if we didn't already have enough things working against us), but it was that one thing - Reiss sleeping through the night after three and a half years of life and never having done so even one time - that convinced me that we had to keep on with this diet and at least make an attempt at improving the other troublesome symptoms Reiss exhibited.
Regarding stimming (self-stimulatory behaviors).......
Reiss exhibited many of the stereotypical stimming behaviors in autistic children. He toe-walked. At the time, I didn't know this was one of the signs of autism. Although not to the extent of many children with more severe autism, he flapped his arms. I didn't know that was one of the signs of autism either. He would spin in circles, sometimes with his hands at his sides and at other times, with them held out at shoulder level. I didn't know that was a sign of autism. He would lie on the floor, literally for hours on end rolling a truck back and forth, back and forth (to a point where he would throw a tantrum if we needed to leave the house or transition to doing something besides rolling that darn truck). I didn't know he was stimulating his visual sense by watching the wheels spin. I also didn't know that was another sign of autism. He had to have his shoes on all the time. And I mean all the time - even to bed at night. He would throw a fit if even one drop of water got on his shirt. He would get bent out of shape if his fork and plate sitting in front of him were accidentally bumped and moved just millimeters. All of these quirks, stims - whatever you want to call them - are signs of autism, yet every single one of these behaviors was dismissed as being normal toddler behavior when we brought them to the attention of our family doctor. We would tell our friends and family about our concerns and not once did anyone ever tell us that these are all signs of autism. We were always encouraged to believe these were all normal behaviors for a toddler. But we knew...we just knew something wasn't right.
We began treating Reiss with diet and supplements before he was diagnosed with autism (but WE had known for a long time!). His stimming behaviors began dissipating immediately. Occasionally - but not very often - we will see Reiss spinning in circles but it's a different kind of spinning. I know that sounds strange and I don't know how to explain it, but it's true. We do not see any of the other behaviors on a regular basis anymore. Sometimes Reiss wants to get water on his shirt. Other times he doesn't even want one drop of it near him. But having said that, it's not like it used to be where he was consistent with throwing a tantrum every single time his shirt inadvertantly came into contact with a drop of water.
As you can see from my post on Tuesday, we still have many of the tantrums and undesirable behaviors but we are learning and working and researching and tweaking this way of life of dietary restrictions and supplements, with the help of Reiss's DAN! doctor, to find what works to solve his problems and what does not work for him, as an individual. Overall, I think Reiss has come a long, LONG way in only a little over a year. I know of a few parents who would consider the improvements he has shown as nothing but miraculous. My husband and I accredit all of it to dietary restrictions, supplementation, and DAN! protocol. I hate to think of where we would be and the greater number of frustrations we would have if we had not at least given a try with this method of treatment.
Regarding ATEC Scores.......
I saved this part for last because I can go on and on and on all day long about how well I think Reiss has progressed and how much my husband and I attribute all of that progress to diet and supplements but it means nothing to most people if it's not coming from the mouth of a professional working in the field of autism.
ATEC stands for "Autism Treatment Evaluation Checklist." An ATEC score determines a child's autism severity level. The higher the score, the more severe the autism is in the child. The lower the score, the more mild the autism is in the child. An ATEC score of 180 is the maximum, with the higher scores indicating severe autism in the child. It is only at a score of less than 50 that it is determined the child may have some success of leading a semi-independent life as an adult. At a score of around 30, the chances that the child may grow up to lead an independent become better. Many times when the score drops below 20, the child loses his autism diagnosis and behaves like any typical child.
When we first began seeing a special doctor for Reiss's autism, which was around three months into using dietary intervention and beginning supplements, Reiss's ATEC score was in the mid-eighties - simply put, his autism was moderately severe. I have to wonder how much higher it was before we even began dietary restrictions because I know by three months in, he had already improved quite drastically. Now, close to one year after our first ATEC scoring and almost a year and a half into changing his diet and adding in many supplements, Reiss received an ATEC score of 37 just two weeks ago. If that's not testimony enough as to the success of dietary invention and vitamin supplementation in children with autism, I don't know what is!
I can't wait to get started with ABA therapy as well, as it is one of the only therapies known to have a proven success rate in helping children with autism. It is also the only therapy that is recommended and supported by the Surgeon General (not that that means anything to me, but I'm sure it may mean something to others who are more trusting of those who are in charge of medical policy in this country) in developing abilities in children with ASD.
Do I think our way is the only way? Of course not. All of these children with autism are so different. After all, what may work for one child with autism, may not work for another. But I will say this, every single book and recovery success story I have read in regards to healing children of autism has always involved dietary intervention and ABA therapy. I think we are close to recovery with dietary intervention. I want to be even closer....
Next step, ABA. And it starts next week.
Regarding speech......
Although Reiss has been quite verbal since beginning communication with speech as a toddler, his speech wasn't always functional. His speech seemed a tad delayed, then it took off, and then he started losing some of it. At around eighteen months of age, he used to do the cutest thing. He would say, "Awesome!" and do a little fist pump into the air. Soon after, he stopped doing it. As the months passed, this wasn't the only thing he lost, it was simply the most memorable.
Reiss wouldn't talk a whole lot except to repeat things. Engaging in a conversation with him was non-existent. He had a lot of repetitive speech (echolalia). He had pronomial confusion - he confused I, you, me, and the possessive forms as well. For example, he might have said, "You want the waffle." but what he really meant was that he wanted the waffle. He could not answer a simple "yes" or "no" question, nor any type of who, what, when, why, or where questions. And he definitely couldn't ask any questions. At all. We never went through the "Why? Why? Why?" phase with Reiss that most parents complain about with their children during the toddler years.
The way it was explained to us by the special services school officials who evaluated Reiss for entrance into developmental preschool, many of these kids don't even understand that a question is being asked and that a response is expected. It doesn't matter that a typical person changes the inflection when asking a question, children with autism many times just don't understand. And that explains why I used to have to tell Reiss "I need a yes or a no, please." when asking him that type of question. Still, often times, he would reply with whatever pleased him and not necessarily the correct answer. I think he knew I was getting frustrated and he was just as frustrated and figured any answer would shut me up.
If something hurt, Reiss could not tell us it hurt. He could not tell us what happened if something got hurt when we had our heads turned and didn't see him fall or bump his head or stub his toe. One can only imagine how frustrating and heartbreaking it was when Reiss, at 28 months old and on the day before I was scheduled to have a c-section for Milla, hurt his leg going down a slide and couldn't walk. We knew something was wrong with his leg but he couldn't tell us exactly where it hurt. Pointing to things to try to find the source of pain was, well, pointless. We would point to his ankle and ask if it hurt and he would nod his head. We would point to his knee and ask if it hurt and he would nod his head. We would then point to say, his nose and ask if it hurt and once again, he would nod his head. That entire incident was about $3000 worth of medical bills and a leg cast for several weeks, only to be told by the doctors that they were certain his leg was not broken but otherwise, had no clue why he would/could not walk on it. (And people wonder why I have so little faith in the majority of medical professionals. This is only one example of why, but I promise, I'll save that tangent for another day.) Within a few days of getting the cast, Reiss was walking again but still couldn't tell us what hurt.
After only a few weeks of being on a gluten-free, casein-free diet, Reiss's language in terms of functionality grew by leaps and bounds. He was answering questions more and more as the days passed. He seemed to better understand the dynamics of speech and how it could get him what he wanted. There are times when Reiss still has some issues with holding a conversation but he can certainly answer just about any type of question now. "Why" questions seem to be the most difficult for him but he will sometimes make up an answer - even if an illogical one. If it means I get an answer when I ask a question, rather than a blank stare, I'll take it!
Regarding sensory hyper-sensitivity.....
My most vivid memories of Reiss having hyper-sensitive senses are of the many, many months where he would just bawl his little eyes out if the phone rang. The vacuum cleaner seemed to be torturous to him. If a door was closed, not even slammed, the poor little guy was ready to jump out of his skin. He would stare at lights and giggle. Car rides were painful...for everyone involved. A simple ten minute ride from Point A to Point B almost always ended in an hour of trying to console our poor baby. We didn't know then that all of these were exactly what they seemed to be for him: way too much sensory overload for him to handle. I remember a particular family member chastising me for keeping the phone off the hook during naptimes and also for not wanting to go anywhere that required a long (in which, "long" consisted of anything more than fifteen minutes) drive. I was told, "Well, he needs to get used to it!" as if forcing him into these situations of enduring the phone ringing or riding around in the car or whatever else would somehow eventually ease the real pain going on in his little body.
Reiss did begin to very, very slowly outgrow most of these things but still, until we began dietary changes, rides in the car were not fun for anyone and the pain of hearing the vacuum cleaner was just simply too much for him. These days, Reiss loves to run the vacuum cleaner himself. Car rides are much easier, although I cannot say they are much quieter. However, the difference now is that it's a more joyful noise on most occasions.
Regarding sleep.....
Most people don't believe me when I tell them about Reiss's sleeping habits as a baby and on into toddler-hood. Occasionally, even other parents of children with autism don't believe me because sleep was not an issue with their child with ASD. But here it is and it is the honest to God's truth and it takes another parent who has been through it to fully comprehend that it really can be this bad.
Having been in the military and gone through Basic Training, I thought I knew sleep deprivation. Until Reiss came along though, I was clueless. Reiss never slept through the night until he was three-and-a-half years old. No, really, I'm serious - not ever, not even one time. And yes, I'm aware that the so-called experts consider six hours of straight sleep for an infant is considered "sleeping through the night." As a baby and up until he was around nine months old, Reiss would wake every fifteen to forty-five minutes, all through the night. I remember telling people this and they would think I was exaggerating. I always got the ol' "It will get better in a few months." answer. But it didn't get better. And of course they thought I was exaggerating - that simply is not a typical sleep pattern for an infant. But I didn't know that then. Well, I did know that but everyone told me I must be exaggerating so naturally, I just thought that it must be that bad with all infants and I was just being a wimpy new mommy. I also remember thinking that I didn't know why anyone would ever want more than one child. How would they ever get any sleep again?
Around the time Reiss was eight or nine months old and I was nearing the end of my rope due to total and complete sleep deprivation, I decided to let Reiss co-sleep with us. Co-sleeping improved his sleep habits but they were still very poor for a child of nine months. By then, he was still waking just about every hour. There were times when he didn't wake but he would laugh hysterically in his sleep. (You parents of children with autism, you know what I'm talking about and you also know that it probably seemed cute and adorable at one time but is now a nightmare come true if your child still does it.) If I was able to drop-off into a deep sleep for only two hours before he woke, I considered myself extremely lucky.
Reiss's constant waking continued for months and months. And years. He had begun sleeping in a toddler bed but was still waking quite often and many times in a state of ear-piercing screams and was unable to be consoled. Sometimes the "waking" when he was screaming those horrible screams was not him waking, but most likely night terrors, in which he was still technically asleep.
If you don't believe what I told you about Reiss's sleep habits before we began a GFCF (gluten-free, casein-free) diet, you almost certainly won't believe what happened after we began eating this way. The very first night after eating this way for an entire day, Reiss slept through the night, all night, without a single wakeup. I knew this diet was going to be a real pain for us and it created even more challenges of its own (as if we didn't already have enough things working against us), but it was that one thing - Reiss sleeping through the night after three and a half years of life and never having done so even one time - that convinced me that we had to keep on with this diet and at least make an attempt at improving the other troublesome symptoms Reiss exhibited.
Regarding stimming (self-stimulatory behaviors).......
Reiss exhibited many of the stereotypical stimming behaviors in autistic children. He toe-walked. At the time, I didn't know this was one of the signs of autism. Although not to the extent of many children with more severe autism, he flapped his arms. I didn't know that was one of the signs of autism either. He would spin in circles, sometimes with his hands at his sides and at other times, with them held out at shoulder level. I didn't know that was a sign of autism. He would lie on the floor, literally for hours on end rolling a truck back and forth, back and forth (to a point where he would throw a tantrum if we needed to leave the house or transition to doing something besides rolling that darn truck). I didn't know he was stimulating his visual sense by watching the wheels spin. I also didn't know that was another sign of autism. He had to have his shoes on all the time. And I mean all the time - even to bed at night. He would throw a fit if even one drop of water got on his shirt. He would get bent out of shape if his fork and plate sitting in front of him were accidentally bumped and moved just millimeters. All of these quirks, stims - whatever you want to call them - are signs of autism, yet every single one of these behaviors was dismissed as being normal toddler behavior when we brought them to the attention of our family doctor. We would tell our friends and family about our concerns and not once did anyone ever tell us that these are all signs of autism. We were always encouraged to believe these were all normal behaviors for a toddler. But we knew...we just knew something wasn't right.
We began treating Reiss with diet and supplements before he was diagnosed with autism (but WE had known for a long time!). His stimming behaviors began dissipating immediately. Occasionally - but not very often - we will see Reiss spinning in circles but it's a different kind of spinning. I know that sounds strange and I don't know how to explain it, but it's true. We do not see any of the other behaviors on a regular basis anymore. Sometimes Reiss wants to get water on his shirt. Other times he doesn't even want one drop of it near him. But having said that, it's not like it used to be where he was consistent with throwing a tantrum every single time his shirt inadvertantly came into contact with a drop of water.
As you can see from my post on Tuesday, we still have many of the tantrums and undesirable behaviors but we are learning and working and researching and tweaking this way of life of dietary restrictions and supplements, with the help of Reiss's DAN! doctor, to find what works to solve his problems and what does not work for him, as an individual. Overall, I think Reiss has come a long, LONG way in only a little over a year. I know of a few parents who would consider the improvements he has shown as nothing but miraculous. My husband and I accredit all of it to dietary restrictions, supplementation, and DAN! protocol. I hate to think of where we would be and the greater number of frustrations we would have if we had not at least given a try with this method of treatment.
Regarding ATEC Scores.......
I saved this part for last because I can go on and on and on all day long about how well I think Reiss has progressed and how much my husband and I attribute all of that progress to diet and supplements but it means nothing to most people if it's not coming from the mouth of a professional working in the field of autism.
ATEC stands for "Autism Treatment Evaluation Checklist." An ATEC score determines a child's autism severity level. The higher the score, the more severe the autism is in the child. The lower the score, the more mild the autism is in the child. An ATEC score of 180 is the maximum, with the higher scores indicating severe autism in the child. It is only at a score of less than 50 that it is determined the child may have some success of leading a semi-independent life as an adult. At a score of around 30, the chances that the child may grow up to lead an independent become better. Many times when the score drops below 20, the child loses his autism diagnosis and behaves like any typical child.
When we first began seeing a special doctor for Reiss's autism, which was around three months into using dietary intervention and beginning supplements, Reiss's ATEC score was in the mid-eighties - simply put, his autism was moderately severe. I have to wonder how much higher it was before we even began dietary restrictions because I know by three months in, he had already improved quite drastically. Now, close to one year after our first ATEC scoring and almost a year and a half into changing his diet and adding in many supplements, Reiss received an ATEC score of 37 just two weeks ago. If that's not testimony enough as to the success of dietary invention and vitamin supplementation in children with autism, I don't know what is!
I can't wait to get started with ABA therapy as well, as it is one of the only therapies known to have a proven success rate in helping children with autism. It is also the only therapy that is recommended and supported by the Surgeon General (not that that means anything to me, but I'm sure it may mean something to others who are more trusting of those who are in charge of medical policy in this country) in developing abilities in children with ASD.
Do I think our way is the only way? Of course not. All of these children with autism are so different. After all, what may work for one child with autism, may not work for another. But I will say this, every single book and recovery success story I have read in regards to healing children of autism has always involved dietary intervention and ABA therapy. I think we are close to recovery with dietary intervention. I want to be even closer....
Next step, ABA. And it starts next week.
Tuesday, February 16, 2010
Because ONE Day Would Just Be Too Much To Ask....
I admit it. I envy parents of typical children. I envy how seemingly easy it is for most of them to just pack up the kids, pack up the car, and go out for a day of fun. I envy how they can think nothing of going to a movie their child has wanted to see or a restaurant for a special family dinner or heck, even just to the post office to mail a package.
I feel like my family's life is all about just wanting ONE day of knowing what it's like to have typical children. One day where we don't have to deal with autism. One day where I can look back at the end of the day and think "Wow, this must be what it's like to be a regular family." But apparently, one day like that is just too much to ask because I'm still waiting for it.
Packing up the kids and packing up the car for a day of fun (and I use the term "fun" very loosely because most of these outings for us consist mainly of chaos control and tantrum prevention) does not happen very often for us. Doing so means packing up food that fits our specialized diet, making sure we have enough clothes changes should we have any "accidents" with a child who would probably be potty-trained by this age, if he was a neurotypical. Don't get me wrong...I know it's not his fault he has autism and I do know we are lucky that he is "mostly" potty-trained, considering I have friends whose children with autism are seven, eight, nine years old and older who still wear diapers.
My kids do not watch tv so going to a movie is out of the question. It's not that we do not allow tv viewing in our home, they simply have no interest and no attention span to sit still for watching tv. Ask a typical child who their favorite cartoon character is and immediately they will spout off some silly Disney or Nickelodeon character. Ask my children who their favorite cartoon characters are and they will stare blankly, not even knowing what you're talking about.
Going to a restaurant? Ha! First of all, my children can't eat most of what is served in restaurants and again, there's the won't-sit-still factor. We could take our own food but then we have to talk to the manager of the restaurant. Then there's dealing with Reiss who has that wonderful aspect of autism that involves rigidity to sameness (although he uses this selectively, as you'll read later about fits involving me and giving him what I think he wants at the time) gets bent out of shape if his plate looks any different than Daddy's plate, so James can't really eat the food offered in the restaurant either unless we sit there with the whole restaurant patronage looking at us while our child throws a fit.
Going to the post office isn't impossible but it's no walk in the park. Typically, I try to do this, when needed, when Reiss is in preschool. Until about two months ago, Reiss hadn't even been in a post office for almost two years. I simply didn't want to deal with it.
Am I complaining? Yes, actually, I am and I'm not afraid to admit it. I'm not blaming anyone or blaming my child but yes, I am complaining. I get tired of all the challenges of autism and how it invades every aspect of our entire lives. Although I don't really pay attention anymore to the stares out in public, I do still get tired of them.
I get tired of every single day, nearly every waking moment being a challenge.
I am tired of politicians in high places cutting funds for services (i.e respite care....can I get a "Hell, yeah!" from those of you who know what I'm talking about???) families like mine desperately need and then offloading billions to people who have entered my country illegally. Yeah, I said it!
I am tired of trying what all the behavior "experts" whose clients are parents of typical children say to do for behavior modification and it not working with my child. I wish all these "experts" would walk a day in my shoes and understand that their Supernanny methods, 1-2-3 Magic, positive reinforcement, giving choices, and just about everything else imaginable doesn't always work with children with autism the way they swear it does with typical children. While all those are good methods and we have had limited success with each of them, the fact still remains that children like mine are wired differently. It's not just me saying this - it truly is a fact. Even my child's own preschool teacher understands that none of these methods will work consistently and for very long with a child with autism. So why don't these professionals who are getting paid multiple times more than her seem to get that?
I get tired of being judged for everything - how I handle situations with my children, the way I feed them, the treatments I choose to work towards recovering my children from autism, and on and on and on. Just this morning I was speaking with another mom of two boys with autism who told me her extended family swears that her sons' improvements towards recovery have nothing to do with the biomedical treatments (that are, coincidentally, very similar to the ones we use) she has been doing, but rather, her sons are simply "outgrowing" their autism. I wasn't sure whether to laugh or cry because we - my husband and I - have both heard things along the same lines.....
"Oh, it looks like Reiss is really starting to outgrow this..."
and
"Just give it a few years and he'll outgrow it."
I am tired of nearly every encounter with my child being a struggle. Reiss may want his pancake cut up today and then throw a ten-minute tantrum tomorrow because I cut it up. This evening I may give him a fork at dinner and then have to listen to him have a meltdown about "Why'd ya' give me a fork, Mommy?" when just yesterday he wondered why I didn't give him a fork. It's like no matter what I do, I have to think about my actions before doing them and recall what it was that made Reiss happy in the same situation ten minutes ago or this morning or yesterday and then recreate whatever made him happy, only to be met with a tantrum because this time he wanted it differently......again. Ignorant people call this being bratty. In my children, it's autism.
Yes, I'm complaining. And yes, I hate autism. And yes, I hate living in a world that's not made for people like me or my children. And yes, I am having a bad day. Yes, I would love to be one of those mothers of children with autism who just puts on a happy face all the time but that's not me. And honestly, I have a feeling that it's not really how those moms feel either......they just save their unhappiness for more private moments. I don't know of a single mom who will say they love autism or the challenges it creates.
I'm done....that's all, folks. Back to the grind and tantrums and challenges and endless paperwork for services for my children and therapies and phone calls to therapists and finding a babysitter who truly "gets" it and finding that magic combo that willsave me my sanity improve my child's well-being.....
I feel like my family's life is all about just wanting ONE day of knowing what it's like to have typical children. One day where we don't have to deal with autism. One day where I can look back at the end of the day and think "Wow, this must be what it's like to be a regular family." But apparently, one day like that is just too much to ask because I'm still waiting for it.
Packing up the kids and packing up the car for a day of fun (and I use the term "fun" very loosely because most of these outings for us consist mainly of chaos control and tantrum prevention) does not happen very often for us. Doing so means packing up food that fits our specialized diet, making sure we have enough clothes changes should we have any "accidents" with a child who would probably be potty-trained by this age, if he was a neurotypical. Don't get me wrong...I know it's not his fault he has autism and I do know we are lucky that he is "mostly" potty-trained, considering I have friends whose children with autism are seven, eight, nine years old and older who still wear diapers.
My kids do not watch tv so going to a movie is out of the question. It's not that we do not allow tv viewing in our home, they simply have no interest and no attention span to sit still for watching tv. Ask a typical child who their favorite cartoon character is and immediately they will spout off some silly Disney or Nickelodeon character. Ask my children who their favorite cartoon characters are and they will stare blankly, not even knowing what you're talking about.
Going to a restaurant? Ha! First of all, my children can't eat most of what is served in restaurants and again, there's the won't-sit-still factor. We could take our own food but then we have to talk to the manager of the restaurant. Then there's dealing with Reiss who has that wonderful aspect of autism that involves rigidity to sameness (although he uses this selectively, as you'll read later about fits involving me and giving him what I think he wants at the time) gets bent out of shape if his plate looks any different than Daddy's plate, so James can't really eat the food offered in the restaurant either unless we sit there with the whole restaurant patronage looking at us while our child throws a fit.
Going to the post office isn't impossible but it's no walk in the park. Typically, I try to do this, when needed, when Reiss is in preschool. Until about two months ago, Reiss hadn't even been in a post office for almost two years. I simply didn't want to deal with it.
Am I complaining? Yes, actually, I am and I'm not afraid to admit it. I'm not blaming anyone or blaming my child but yes, I am complaining. I get tired of all the challenges of autism and how it invades every aspect of our entire lives. Although I don't really pay attention anymore to the stares out in public, I do still get tired of them.
I get tired of every single day, nearly every waking moment being a challenge.
I am tired of politicians in high places cutting funds for services (i.e respite care....can I get a "Hell, yeah!" from those of you who know what I'm talking about???) families like mine desperately need and then offloading billions to people who have entered my country illegally. Yeah, I said it!
I am tired of trying what all the behavior "experts" whose clients are parents of typical children say to do for behavior modification and it not working with my child. I wish all these "experts" would walk a day in my shoes and understand that their Supernanny methods, 1-2-3 Magic, positive reinforcement, giving choices, and just about everything else imaginable doesn't always work with children with autism the way they swear it does with typical children. While all those are good methods and we have had limited success with each of them, the fact still remains that children like mine are wired differently. It's not just me saying this - it truly is a fact. Even my child's own preschool teacher understands that none of these methods will work consistently and for very long with a child with autism. So why don't these professionals who are getting paid multiple times more than her seem to get that?
I get tired of being judged for everything - how I handle situations with my children, the way I feed them, the treatments I choose to work towards recovering my children from autism, and on and on and on. Just this morning I was speaking with another mom of two boys with autism who told me her extended family swears that her sons' improvements towards recovery have nothing to do with the biomedical treatments (that are, coincidentally, very similar to the ones we use) she has been doing, but rather, her sons are simply "outgrowing" their autism. I wasn't sure whether to laugh or cry because we - my husband and I - have both heard things along the same lines.....
"Oh, it looks like Reiss is really starting to outgrow this..."
and
"Just give it a few years and he'll outgrow it."
I am tired of nearly every encounter with my child being a struggle. Reiss may want his pancake cut up today and then throw a ten-minute tantrum tomorrow because I cut it up. This evening I may give him a fork at dinner and then have to listen to him have a meltdown about "Why'd ya' give me a fork, Mommy?" when just yesterday he wondered why I didn't give him a fork. It's like no matter what I do, I have to think about my actions before doing them and recall what it was that made Reiss happy in the same situation ten minutes ago or this morning or yesterday and then recreate whatever made him happy, only to be met with a tantrum because this time he wanted it differently......again. Ignorant people call this being bratty. In my children, it's autism.
Yes, I'm complaining. And yes, I hate autism. And yes, I hate living in a world that's not made for people like me or my children. And yes, I am having a bad day. Yes, I would love to be one of those mothers of children with autism who just puts on a happy face all the time but that's not me. And honestly, I have a feeling that it's not really how those moms feel either......they just save their unhappiness for more private moments. I don't know of a single mom who will say they love autism or the challenges it creates.
I'm done....that's all, folks. Back to the grind and tantrums and challenges and endless paperwork for services for my children and therapies and phone calls to therapists and finding a babysitter who truly "gets" it and finding that magic combo that will
Thursday, February 11, 2010
Mysterious Milla Meltdowns Mean No Mommy Break For Me
On the second Thursday of every month (except December!) there is a women's church group meeting, called Elizabeth Ministry Gathering, that meets at the church of a few of my other mommy friends. Typically, I try to go to the meeting but have been very sporadic in those efforts the last several months. One of my goals (I'm not calling them resolutions because many of them are not "fixing" anything, but rather, efforts to simply do better in particular aspects of my life.) for 2010 is to get out more amongst other moms and also to try and attend each month's EM Gathering. I keep telling myself I need these Mommy Timeouts.
I made it to January's EM Gathering and was well on my way to making it to this evening's meeting too until a few minutes before I planned to shovel my dinner in and make my way out the door. That is when the Mysterious Milla Meltdown occurred.
Milla has meltdowns all the time (yes, I know, two-year-olds do that - so save me the "That's-totally-normal" lecture, please.) so the fact that she was having a meltdown was not out of the ordinary at all. What was strange though, was how she was conducting her tantrum. A few minutes before dinner was ready, she walked her little shirtless self into the laundry room, left the light in there turned off, closed the door, and sat down on the floor. A few minutes later she started screaming and crying. I made an attempt to go comfort her and try to bring her out but she was having none of it. She screamed when I turned the light on. She flailed when I tried to pick her up. She was not coming out of there. So I left and continued with cooking dinner.
A few minutes later, same scene, different position. Milla had gone from sitting on the floor to lying down on the cold tile floor. Let's not forget she was shirtless too, so I know she had to be cold because the laundry room connects to the door going to the garage and it gets cold, cold, cold in there.
She screamed to have the light turned off when I turned it on. She screamed answers to all my questions:
Me: Do you want anything?
Milla: NO!!!!
Me: Are you hungry?
Milla: NO!!!!
Me: Do you want to eat dinner?
Milla: NO!!!!
Me: Do you want the light on or off?
Milla: Light OOOOOOOFFFFFFFF!!!!
So I left her in there again. She would not come out for dinner. James, Reiss, and I all ate dinner without her while she sat in there letting out an occasional wail for goodness knows what reason. She didn't want to eat and we did ask several times while we, ourselves, sat, eating our own dinner.
Meanwhile, it was getting closer and closer to the time when I needed to leave to go to my EM meeting but I still planned on going. But the nervous mommy in me set in and the fear of all the "what if" scenarios would not stop nagging me. So I stayed home.
Just before all this happened, Milla had eaten part of a sucker given to her from Reiss's and her occupational therapist. Normally, we do not allow artificial dyes or flavors and we try to stay away from soy. While we are not as stringent with these things like we are with gluten and casein, we do allow exceptions occasionally. This sucker had all three of those things in it - red dye, artificial flavoring, and soy lecithin.
Now I know for people who are not familiar with this diet we are on, or for those who do know about it but do not put a whole lot of stock in it, it may sound ridiculous and downright paranoid of me to think that a little sucker would cause such a reaction in a child - or more specifically, my child. However, I have observed enough of my own kids' reactions to different foods to know that yes, something as trivial as a few licks on a Valentine's sucker can indeed induce such a reaction with one of my children.
Before I even allowed the occupational therapist to give Reiss or Milla the suckers, she volunteered the bag upfront so that I could check out the ingredients list. The list didn't have any glutenous or casein-containing ingredients on it so I said "what the heck" and made an exception, all while hearing that little voice inside tell me I shouldn't.
Next time I will listen to that little voice and maybe, just maybe, listening will result in Mommy getting a break that evening.
Lesson learned: Listen to the voices in your head.
I made it to January's EM Gathering and was well on my way to making it to this evening's meeting too until a few minutes before I planned to shovel my dinner in and make my way out the door. That is when the Mysterious Milla Meltdown occurred.
Milla has meltdowns all the time (yes, I know, two-year-olds do that - so save me the "That's-totally-normal" lecture, please.) so the fact that she was having a meltdown was not out of the ordinary at all. What was strange though, was how she was conducting her tantrum. A few minutes before dinner was ready, she walked her little shirtless self into the laundry room, left the light in there turned off, closed the door, and sat down on the floor. A few minutes later she started screaming and crying. I made an attempt to go comfort her and try to bring her out but she was having none of it. She screamed when I turned the light on. She flailed when I tried to pick her up. She was not coming out of there. So I left and continued with cooking dinner.
A few minutes later, same scene, different position. Milla had gone from sitting on the floor to lying down on the cold tile floor. Let's not forget she was shirtless too, so I know she had to be cold because the laundry room connects to the door going to the garage and it gets cold, cold, cold in there.
She screamed to have the light turned off when I turned it on. She screamed answers to all my questions:
Me: Do you want anything?
Milla: NO!!!!
Me: Are you hungry?
Milla: NO!!!!
Me: Do you want to eat dinner?
Milla: NO!!!!
Me: Do you want the light on or off?
Milla: Light OOOOOOOFFFFFFFF!!!!
So I left her in there again. She would not come out for dinner. James, Reiss, and I all ate dinner without her while she sat in there letting out an occasional wail for goodness knows what reason. She didn't want to eat and we did ask several times while we, ourselves, sat, eating our own dinner.
Meanwhile, it was getting closer and closer to the time when I needed to leave to go to my EM meeting but I still planned on going. But the nervous mommy in me set in and the fear of all the "what if" scenarios would not stop nagging me. So I stayed home.
Just before all this happened, Milla had eaten part of a sucker given to her from Reiss's and her occupational therapist. Normally, we do not allow artificial dyes or flavors and we try to stay away from soy. While we are not as stringent with these things like we are with gluten and casein, we do allow exceptions occasionally. This sucker had all three of those things in it - red dye, artificial flavoring, and soy lecithin.
Now I know for people who are not familiar with this diet we are on, or for those who do know about it but do not put a whole lot of stock in it, it may sound ridiculous and downright paranoid of me to think that a little sucker would cause such a reaction in a child - or more specifically, my child. However, I have observed enough of my own kids' reactions to different foods to know that yes, something as trivial as a few licks on a Valentine's sucker can indeed induce such a reaction with one of my children.
Before I even allowed the occupational therapist to give Reiss or Milla the suckers, she volunteered the bag upfront so that I could check out the ingredients list. The list didn't have any glutenous or casein-containing ingredients on it so I said "what the heck" and made an exception, all while hearing that little voice inside tell me I shouldn't.
Next time I will listen to that little voice and maybe, just maybe, listening will result in Mommy getting a break that evening.
Lesson learned: Listen to the voices in your head.
Friday, February 5, 2010
Therapy, As An Extreme Sport
Some parents overload their kids' schedules with football, soccer, softball, basketball, karate, gymnastics, dance, hockey and whatever else their children come home begging to partake in. But not me. Nope, Reiss has never begged to be in any of those things and other than the occasional passing by the tv and noticing Daddy is watching "Colts guys" - which consist of any football players, doesn't matter whether it's college, NFL, or a fictional movie like Rudy - I would venture to say he is not even aware of the existence of many types of sports.
Oh sure, we play outside quite often. We throw balls around. We get the hose out and these monkeys play and I get soaked and slightly irritated. James and I take Reiss and Milla out to the swingset and sandbox to play around for awhile. We ride our bikes. Or, more precisely, James and I ride our bikes and Reiss and Milla ride in the bike trailer. Reiss does ride his bike with training wheels but his bodily movements (kinetics, kinesthetics, neither of those are the right word. Where is the right word when I need it???) need some work and his pedalling is not fluid in motion. In summertime, quite frankly, I think Reiss could easily be persuaded into living outside if I lost all my marbles and thought it was a good idea as well. That, however, is not the case. I still have a few marbles rolling around up there and furthermore, I have no plans of chucking the house for a nest or den in the backyard woods.
Ramble, ramble, ramble....point being this: Organized sports are not something Reiss participates in at this time. Milla, well, she is definitely too young for that sort of thing just yet.
So instead of sports, we have therapies - my new pastime. Well, actually, my part in all of it is doing the research, finding the resources and professionals to carry out the therapies, waiting around (when the therapies take place in an office setting) while the therapies are being performed, and a whole lot of praying that all of it is going to result in some real and visible changes.
If my kids' therapy schedules were to be laid out in a format similar to an event program at a sporting event, it might look something like this:
Reiss:
Developmental Preschool (Preschool through the local school system for children with learning challenges)
Miss Emily, The Toy Doctor (Private Occupational Therapy)
Talking Doctor (Private Speech Therapy)
and coming soon....Applied Behavior Analysis, the in-home program version
Milla:
Miss Laura's Visit (In-home Speech Therapy through Early Intervention)
Miss Emily and Her Swing (Occupational Therapy)
Jill and Her Toybox (In-home Developmental Therapy through Early Intervention)
Miss Ashley and Her Potato Head Couple (Private Speech Therapy)
I never wanted to be a soccer mom. My friends with older children always told me to never let my children play baseball or softball because the innings are so long with children who have no skills playing and it makes the game last all day. No mother wants to be this kind of mother: the Therapy Mom.
But that is exactly what I have become.
The silver lining to this storm-sized cloud though, is that I have already seen improvements in both children in just the two short weeks from when we began with Reiss only being in preschool and Milla only receiving in-home speech therapy. Reiss actually wants to go to the "toy doctor." Milla is using "I" phrases more in place of her usual "me" demands. They are both gaining exposure to adults outside of their usual regimen of Daddy, Mommy, teachers, and occasional grandparent visits.
Now, If I could just get more of their appointments in sync with one another, I could possibly become that mom I have wanted to become for a very long time: The Bookworm Mom. Oh, how I miss reading. Reading, that is, during daylight hours and not at three in the morning because I am awake worrying about all I didn't get done the day before or all that needs to be done in a few short hours or wondering if today will be the day that Reiss goes poop on the potty again and not in his pants or how I could have handled things the day before when tempers started tantrum-ing or hoping to find peace in the hours that will follow when one or both children are not behaving in a most desirable way or......or......or.................blah, blah, blah.
In my case, perhaps the title of "Therapy Mom" should also mean some of it for myself as well.
Oh sure, we play outside quite often. We throw balls around. We get the hose out and these monkeys play and I get soaked and slightly irritated. James and I take Reiss and Milla out to the swingset and sandbox to play around for awhile. We ride our bikes. Or, more precisely, James and I ride our bikes and Reiss and Milla ride in the bike trailer. Reiss does ride his bike with training wheels but his bodily movements (kinetics, kinesthetics, neither of those are the right word. Where is the right word when I need it???) need some work and his pedalling is not fluid in motion. In summertime, quite frankly, I think Reiss could easily be persuaded into living outside if I lost all my marbles and thought it was a good idea as well. That, however, is not the case. I still have a few marbles rolling around up there and furthermore, I have no plans of chucking the house for a nest or den in the backyard woods.
Ramble, ramble, ramble....point being this: Organized sports are not something Reiss participates in at this time. Milla, well, she is definitely too young for that sort of thing just yet.
So instead of sports, we have therapies - my new pastime. Well, actually, my part in all of it is doing the research, finding the resources and professionals to carry out the therapies, waiting around (when the therapies take place in an office setting) while the therapies are being performed, and a whole lot of praying that all of it is going to result in some real and visible changes.
If my kids' therapy schedules were to be laid out in a format similar to an event program at a sporting event, it might look something like this:
Reiss:
Developmental Preschool (Preschool through the local school system for children with learning challenges)
Miss Emily, The Toy Doctor (Private Occupational Therapy)
Talking Doctor (Private Speech Therapy)
and coming soon....Applied Behavior Analysis, the in-home program version
Milla:
Miss Laura's Visit (In-home Speech Therapy through Early Intervention)
Miss Emily and Her Swing (Occupational Therapy)
Jill and Her Toybox (In-home Developmental Therapy through Early Intervention)
Miss Ashley and Her Potato Head Couple (Private Speech Therapy)
I never wanted to be a soccer mom. My friends with older children always told me to never let my children play baseball or softball because the innings are so long with children who have no skills playing and it makes the game last all day. No mother wants to be this kind of mother: the Therapy Mom.
But that is exactly what I have become.
The silver lining to this storm-sized cloud though, is that I have already seen improvements in both children in just the two short weeks from when we began with Reiss only being in preschool and Milla only receiving in-home speech therapy. Reiss actually wants to go to the "toy doctor." Milla is using "I" phrases more in place of her usual "me" demands. They are both gaining exposure to adults outside of their usual regimen of Daddy, Mommy, teachers, and occasional grandparent visits.
Now, If I could just get more of their appointments in sync with one another, I could possibly become that mom I have wanted to become for a very long time: The Bookworm Mom. Oh, how I miss reading. Reading, that is, during daylight hours and not at three in the morning because I am awake worrying about all I didn't get done the day before or all that needs to be done in a few short hours or wondering if today will be the day that Reiss goes poop on the potty again and not in his pants or how I could have handled things the day before when tempers started tantrum-ing or hoping to find peace in the hours that will follow when one or both children are not behaving in a most desirable way or......or......or.................blah, blah, blah.
In my case, perhaps the title of "Therapy Mom" should also mean some of it for myself as well.
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