Saturday, October 31, 2009

Oh, To Be A Doctor.....

A funny thing happened Thursday morning. At precisely 9:30 a.m. the doorbell rang. Not expecting anyone, I didn't answer it. About a minute later, it rang again. This time I looked out the window but did not recognize the car in the driveway. Unless you are a really persistent door-to-door salesperson - in which case, you shouldn't be ringing my doorbell anyway, due to the "No Soliciting" sign posted directly next to the button - or some creepy stalker who can't get a clue to leave, two rings is usually the limit for any normal person. That is the norm, right? Or am I just ignorant and rules of etiquette proclaim one ring to be the proper number?

But no, the doorbell rang a third time.

This time I actually walked to the door to find our service coordinator, Tracy, with First Steps (This is the organization through which Milla receives speech therapy and in other parts of the country it is called Early Intervention), standing there waiting for me to let her in for our quarterly appointment we scheduled weeks ago. Yes, it was in my planner. Yes, I kept reminding myself all week long, but apparently only up until the day before the appointment and then it somehow escaped my thought process never to be recovered again because, by around 9:34 Thursday morning, I was about to wail on someone for ringing my doorbell so many times and not leaving me alone.

Embarassed and apologizing all over the place, I opened the door and poor Tracy came in.

This post isn't about my lovely fifteen minute appointment (nearly five minutes of which was taken up by my avoiding the doorbell ringing) with Tracy and all the paperwork we ran through in that short period of time, but rather, what followed afterwards. However, it was a bit humorous and worth mentioning the thought that I had an unexpected arrival of a serial killer or serial salesperson or serial stalker and how I was avoiding opening the door to such a person when, all along, I should have remembered it was the person who was clearly marked in pen on my planner for that morning at that specific time.

That said, I do need to mention one piece of paperwork that is pertinent to this story. One of the items Tracy brought was a diagnosis sheet that I needed to sign off on that would then be sent to our family doctor for him to confirm that yes, Milla has developmental delays and her need for speech therapy services is warranted.

Now I need to backtrack a little bit here because this is the part where I thought it was odd that Milla's doctor needed to sign off saying he had diagnosed her with these delays because 1)He had never diagnosed her in the first place when we began getting speech services several months ago and 2)Her need for services was first determined and is determined by the speech and occupational therapists who serve as evaluators for First Steps.

Are you confused yet? Basically, when we first started to notice Milla was not talking at a level as a typical child her age, we contacted First Steps. They sent two evaluators (whose degrees are in speech pathology and occupational sciences) out who sat down with Milla and I for around two hours and determined that Milla did indeed show some weaknesses and delays in enough areas to qualify her for services. Our family doctor was never involved in the process.

BUT - there is always a "but"....

But despite the fact that the two evaluators felt she needed services, in order for Milla to receive services, our doctor had to sign off on this one sheet I am talking about. Apparently, around six months ago, our doctor did so with no questions asked.

Fast forward to this week and the phone call I received yesterday from Tracy telling me that she had been notified by Admin Girl at Milla's doctor's office that our doctor would not sign off on the form because he had not seen her in over a year. Hmmmm.....he had no problem with not seeing her six months ago and confirming her diagnosis as "developmental delays." But now six months later, he needs to see her in order to sign off???

Why has she not seen him in over a year, you ask? Well, after we began determining that Reiss has autism and that we felt his vaccines played a part in it, we stopped taking Milla to the doctor. If she was not sick, why bother? We didn't want her shot up with the same bunch of crap. And she has never been sick (aside from a spell where she kept vomiting but we were pretty certain that was an intolerance to a particular food and the problematic food has since been eliminated). If you're taking a child to a Well Baby appointment and not getting her/him vaccinated, then what is the purpose?

So this morning I called the doctor's office and told Admin Girl, who answered the phone, my situation and why Milla has not been seen in over a year in their office. I asked if there was any way we could just come in for an appointment and have Milla seen so that the doc could sign off on the form. Without it, we cannot get speech services. And I made sure to include that in my plea.

Admin Girl told me that even if we are no longer vaccinating Milla, she still needs to be seen for Well Child visits so that the doctor can determine whether she is meeting her developmental milestones or has developmental delays present.

I wanted to say, "Um.....excuse me? Do you mean the same developmental milestones that I kept bringing to the doctor's attention every three months when I thought that my son was not hitting them? The same milestones that the doctor reassured me that children reach at different periods and it didn't matter that my son wasn't right on target? The same milestones that we persistently kept bringing to the doctor's attention that we were extremely concerned about and he told us not to worry? Do you mean the same milestones that, when missed, can indicate developmental delays and even autism? Do you mean the same milestones that six months ago, without seeing Milla in person, the doctor signed a form stating she had missed them and had developmental delays present? Those? Are those the same ones? Because, if those are the same ones you're referring to, the doctor missed them altogether with our son and dismissed our concerns and it was only after we began talking to parents of other autistic children that we found that there was concern there all along."

But, of course, I didn't say that.

I politely accepted an offer of an appointment for next week and we'll get our little signature and things in our world will be righty tighty again. And all because of a bunch of bureaucratic paperwork that requires a scribble from a doctor who missed it all the first time around with child number one.

The irony makes me want to vomit.

Thursday, October 29, 2009

Now THIS Is Cool!




(Edit: The 3/50 Project site has been having some technical difficulties and clicking on the above may give an error. If that is the case, click HERE.)

By sheer accident, I came across this website while reading some totally unrelated content on another website. The 3/50 Project is basically a grassroots movement to support local businesses and assist them in weathering the storm of this tough economy.

As a person whose entire family's well-being depends on a small family-owned business, supporting local businesses and those of the "Mom & Pop" variety has always been something I try to do, when possible, and take pride in doing.

I won't even try to provide lengthy detail of the process and how we can all help our local businesses. Instead, you can read about it straight from the source. If you choose not to click on the link, "The goal is simple: Ask consumers to frequent three local brick and mortar businesses they don’t want to see disappear, and to spend a very affordable $50 per month doing it."

And if $50 is too much for your budget, create your own 3/$40 or 3/$25 Project or whatever is affordable for you. You will feel good about making such an effort and the business owners whose businesses you frequent will appreciate it. Every little bit counts! So let's get out there and get shopping! Or eating! Or getting our car worked on....or whatever!

Wednesday, October 28, 2009

Join Me on Facebook for Biomedical Discussions!

This is just a quick heads up to all my bloggie world friends that a few friends and I have created a facebook group called DAN!/Biomedical Parents. If you are interested in joining, the aforementioned boldface words are the exact words you will want to search for when on facebook.

The intent of the group is for those who are using the DAN! protocol or those who are interested in learning more about it to discuss issues relating to the protocol and other biomedical treatment methods used in treating individuals with ASD's.

Here is the fine print, per se. And I hate to have to say it but unfortunately, as my friends and I have found in the past, it is necessary: Currently, the group is set as "open," making it available for any facebook member anywhere in the world to join. If problems should arise with any member or members causing trouble (bashing, criticizing treatment choices of other members, etc.), said members will be booted from the group and the group will be reset as "secret." In the event that the group is changed to secret mode, it will not be searchable on facebook and membership will be by invitation only.

Come join us on facebook and give us an introduction! I look forward to "meeting" all of you!

Tuesday, October 27, 2009

Swine Flu Vax Is A Moral Obligation???

Really? Seriously?
Read what I'm talking about here.....


I am speechless, yet totally outraged at the same time, by the audacity of these people who are supposed to be "religious leaders" for their labelling the H1N1 vaccination 'a moral obligation.'

Um, no, I don't think so! Plain and simple. Who the you-know-what do they think they are, anyway???

And because I refuse to get off on a tangent and get any madder at these ignorant souls today, this concludes my post for the day, folks!

Enjoy! And don't shoot me....I'm just the messenger.

Sunday, October 25, 2009

A (Nearly) Perfect Autumn Day

Today we went to a birthday party for a little boy who is our neighbor and a very good friend. In the last three and a half years, even before the little guy came along, James and I have really gotten to know his mother and father and they are awesome people. By the way, if you click on the link on the right for "The Wellness Philosophy," that is our neighbor's blossoming business.

The birthday party for our little friend was held at a park fairly close to our house. We have been there one other time and didn't think much of it but obviously it was because we did not walk around a whole lot while there. When we went today, we found there was a bridge over a stream that led to what must be miles and miles of cleared away and paved trails. It was an unbelievable surprise, to say the least.

At one point, I was walking along one of the trails with Milla while Reiss and James were over in the playground area and, with all the colorful leaves falling all around us and just being in the middle of it all, it felt like a little slice of Heaven. Being back there surrounded by all the color and beauty of the environment, one would never guess there is the hustle and bustle of a very busy commercial area close by and a very well-travelled street right outside the park's gates. It was refreshing and relaxing and I could have kicked myself for forgetting to bring the camera. The setting provided a perfect opportunity for one of those kinds of photos where a child is pictured from the back wondering amidst falling leaves and those already on the ground. Grrrr! Maybe next week.....

Our neighbor, who has shown great interest in the biomedical treatments we use in treating Reiss' autism, attended one of the DAN! conferences and is now a practicing provider in the DAN! protocol. Because she is so aware of the importance of our GFCF diet, she made a cake especially for us to eat at her own son's birthday party! How cool is that? And although I told her to please do not do anything special for us, I have to admit, that is a true friend!

There were several children at the party and we all played on the playground equipment and walked around (making certain to avoid a very large, very disrespectful pile of dog poo someone failed to dispose of - seriously...what is wrong with people?) and talked and it was just great fun.

There was one time when Milla was making her way up the steps to the slide and I had to seriously restrain myself and now I wish I hadn't but who knows what the consequences would have been had I opened my mouth. Anyway, there was a little girl of about four years old who was trying to get past Milla rather than wait her turn. Her father kept telling her to wait her turn and she kept on trying to get past Milla and the father grabbed her on her chest (like one of her breasts) and squeezed and very angrily told her to wait her turn. She let out a little wail and, although I did see it happen, I didn't need to see it happen to know by her wailing that it hurt pretty badly. Call me a wimp and call me a stereotyper, but I kept my mouth shut because all his tattoos running up and down his arms scared the crap out of me. Now I'm wishing I would have said something....poor little girl. If he does that out in public, I don't even want to think what happens at home when she does something he disapproves of. (SIGH!)

The child abuser was the worst part of my afternoon. Otherwise, things were mostly ideal. The kids played fuss-free for nearly two hours. They were very happy and having fun and probably would have played even longer without any fits but Milla was getting tired and naptime was approaching, so we left. Milla was worn out and was asleep in her carseat as we approached our house.

It doesn't sound like a particularly spectacular day but it was a great Autumn day and one I will remember for a long time.

Something to Ponder This Sunday

Disclaimer: This post includes mention of bodily functions of the #2 kind. If you are easily grossed out or do not see the humor, poo on you.


Poopology, according to Reiss:
If you poop on the potty, that's a poop.
If you poop in your underwear, that's a turd.

Saturday, October 24, 2009

Oh, How Autism Changes Your Goals....

Jenn over at Can Mom Be Calm? gave me an idea for a blog post of my own with one of her latest posts. In it, she compares her pre-baby goals to her goals after giving birth. Or rather, to her goals for her children now that she has two children with special needs.

I have been thinking about this a lot lately myself, especially during those times when I am subjected to another parent rambling on about how their child is the best soccer player his school has ever seen. Or how their child is the first in her class to make the fill in the blank with a sport travelling team. Or how about this one (we have all had to listen to someone like this): How the child walked out of the womb and was potty-trained by one year of age.

Okay, maybe that's an exaggeration but you get the point.

As Jenn pointed out in her own post, no matter whether you have a child who is typical or one who has special needs or even one who is extraordinarily gifted, for that matter, once you have a child and reality begins to set in, your goals begin to change so rapidly that you wonder how you were ever so naive to believe things would be the way you imagined them before you had the child.

Here are just a few of my "before" and "after" goals. And if you're new here and the name of this site wasn't enough to clue you in, here's a newsflash: I have a child with autism.

For my child -
Before: My child will not become addicted to television.
After: Please, God, can you get him to watch tv for just five minutes so I can have a break to breathe?

Before: I will not allow any organization (Boy Scouts or other) to base my child's membership eligibility on whether or not he goes out soliciting over-priced merchandise to our neighbors every other week.
After: At some point, I hope my child will "get" the concept of being in an extra-curricular activity.

Before: My child will not be that child in a restaurant who, at say, eight years old, has no table manners and still makes a toddler-size mess.
After: My child will be able sit quietly enough and sit still long enough by say, eight years old, that we can go out to eat as a family without people pointing and staring at us.

Before: My child will not be that child who all the other kindergarten children are whispering about because he peed his pants.
After: (With fingers crossed) My child will not be that child who all the other freshmen are loudly taunting because he peed his pants.

Before: My child will not be the child who gets picked on.
After: My child will almost certainly be the one who gets picked but I hope he can let it roll off his back (or let's hope God is looking out for the child doing the picking on him).

Before: My child will love to read.
After: I hope my child will read at his appropriate grade level.

Before: My child doesn't have to be Mr. Popularity but I hope he has a lot of friends.
After: I hope my child will "get" the concept of friendship soon. It's something we discuss frequently.

For myself -
Before: I will continue to work out and refuse to become a shlumpadinka mama.
After: Does playing waitress to my children and rarely getting a break to sit down count as exercise?

Before: I will not be one of those moms who goes out in public looking like they just got out of bed.
After: I hope I get to brush my teeth today. Getting a shower would be like a slice of Heaven.

Before: My husband and I will plan for college. We will not wonder during our child's senior year how we are going to pay for college.
After: I hope my child will do well in mainstream public school. Attending college would be a totally unexpected and more than welcome bonus.

Before: I will not be that parent...you know, like the one I mentioned before who brags about their child doing everything better than your child and at a younger age.
After: I will put on my best smile and try my darndest to not vomit down the front of that parent's shirt when I have to listen to their meaningless droning.

Enough of my goals. I need to get off here and go help my four-year-old study for the LSAT.

Friday, October 23, 2009

A Monkey's Birthday

In this week's news, Milla turned two years old! We had a very impromptu party for her with only Daddy, Mommy, Reiss, Grandma Marie, Grandpa Phil, and Grandma Elaine as her guests.

We weren't going to do anything at all except make a cake but then I had James invite his mom over for dinner and cake and ice cream (all gluten-free and casein-free, of course!) and then I invited my own dad and step-mom for cake and ice cream. My dad is retired but he and my stepmom came just after she got home from work, not giving them time to eat dinner and I then felt bad for only inviting them for cake and ice cream. Once I got to feeling bad for that, I then began to wonder if I actually invited them for dinner and then didn't have dinner waiting for them when they got here.....who knows, I'm getting old. Should that be the case and if you are reading this, Dad or Elaine, my apologies because I really did think I only invited you for cake and ice cream.

I should have just invited everyone for dinner and I wouldn't be wondering like this now. Anyway, on to the photos............

First, we opened gifts and Milla received six books total. She loves, loves, LOVES books, which I love, love, LOVE that she loves them! Here we are looking at one of the board books she received that has flaps in it with toys and people and assorted other things hiding behind the flaps.

Here she is pointing to the baby in the book. She also loves babies and ducks and always points them out whenever she sees them, no matter where they are. We have a car dealership close to our home that has a big duck on the sign and she always yells out "Duck!" whenever we pass by it.

Milla's birthday cake.
I made the cake, frosted it, did the little stars on it and wrote her name. Next I let Reiss and Milla take turns placing the pure sugar (yuck!) ducky decorations on the cake. Notice the one that is upside down? Each child then placed a little duck candle wherever they chose. I'm not bashing those who buy store-bought cakes, but I'll take the fun of having the kids help out over paying for a fancy cake any day!

Milla blowing out her candles. Actually, I did it for her but she has plenty of years to get the hang of it.

"Let me at it!" Milla talked about her cake all day after we made it. When it finally came time to eat it, I don't think she could believe it.

Picking off the duck candles.....I also let Milla and Reiss pick off a few sugary ducks before slicing the cake into pieces.

Reiss helping with the first slice....

Milla helping with the next slice....
Happy Birthday to our little monkey!!!

Sunday, October 18, 2009

Wintertime at the Pumpkin Patch

We froze our buns off taking the kids to a local pumpkin patch yesterday. Honestly, I can't remember the last time it was this cold in October for so many consecutive days. Enough complaining, here are the pics........

Reiss trying to pick up a pumpkin. This is not the one he ultimately ended up choosing. That came later.....

Milla venturing into the little pumpkin area.

Milla holding a pumpkin and being silly with Mommy. This also was not the pumpkin she chose. She wanted one that was much bigger.

Reiss....just being Reiss.

The kids could choose a pumpkin from this area but we decided to let them choose from the actual pumpkin patch that you had to get to by hayride.

Reiss patting the head of the cutest little baby cow ever!

Milla on top of the world.

Reiss on top of the world.

All three monkeys being silly.

No pictures to post of the hayride. Well, that's not entirely true. We have two photos from the hayride but I'm all slouched over trying to hold Milla and not bounce all over creation from the rough ride through the mud out to the pumpkin patch.

This place we went to is a landscaping place where we usually get mulch by the truckload every year in the springtime. When we were coming back from the apple orchard with Reiss' class field trip a few weeks ago, we noticed this place was doing a kid-oriented pumpkin patch and hayride sort of thing.

For $4 (over age 2) per person, we got a hayride, corn maze, petting zoo (which only had four animals) and a straw bale mountain. The $4 did not include our pumpkins, which were $3 each. For what we got, I thought $4 was a bit much but it was fun for the kids. I know other people probably don't think $4 is much....but then, I don't think like most people. I expect more for my money than most people....but that's another post.

Saturday, October 17, 2009

GFCF Sweet Potato Hash

This evening's dinner was a product of one of those times when I had no clue what to make. I had some ground beef that needed to get gone and could not be frozen, as it had already been frozen once before. Although I love food with a Mexican flair to it, I have grown weary of limiting our meals to Mexican dishes and spaghetti whenever I have ground beef on-hand.

Having said that, I began throwing things together and sorta hoped for the best. Here was the conconction.....

1 organic red jewel yam (this sounds fancy but you could use a plain ole sweet potato), diced small
1 organic onion, diced
1 organic red bell pepper, diced
organic, hormone-free, antibiotic-free ground beef....a pound maybe...I honestly don't know how much I used
fennel seed

In a large skillet, saute the yam in olive oil until very firm tender, as in, getting cooked on the outside but you can fork-feel that the inside is still pretty crisp. With the yam still in the pan, dump the onion and red pepper in. Stir. Throw in the ground beef and jab at it to break up. Add a good amount of fennel seed...to taste, of course.

Continue cooking until ground beef is fully cooked and veggies are to the texture of your liking. Add salt and pepper to taste. Enjoy!

There you have it! A gluten-free, casein-free, one-pot, five-ingredient (I don't count oil, salt, and pepper in this case) meal. We ate this with a side of baby spinach and tomato salad and dressing.

The jury's decision:

Milla: "Yuck!" I'm not sure why either, because she likes all the ingredients. She has eaten sausage and likes it but maybe it was the fennel seed that turned her off.
Reiss: He ate it like lettuce wrappers you can order at some restaurants. He wrapped this conconction in the larger sized baby spinach leaves.
James: No comments either way but he went back for seconds or thirds, I'm not certain. If he doesn't like something, he will not say anything and will only eat part of what is served to him and snack later in the evening.
Me: I'll be making this again!

I'm Alive! Honest!

For those who have been wondering and asking, yes, I am alive. I know I don't typically go this long without a post, if even a short one. These last few days have been absolutely nuts around here and I actually have two posts started and saved in my "Drafts" to tell everyone all about it.....it's just getting the motivation and time to finish them that seems to be working against me. Of course, Farmville isn't helping either.

With that said, hopefully, I will be back very soon. Right now I need to get off here so I can go harvest some crops help out with getting breakfast going.

Thursday, October 15, 2009

Let's Just Get Something Straight Here....

People, you do have rights regarding your child and vaccinations. Yes, Americans do still have a right to refuse to vaccinate their children....for now, anyway.....and they can still go to school! Although I would love to be a homeschool parent myself, becoming one is not a requirement if a person chooses not to vaccinate their child. Amazing!

I know this comes as a surprise to many people because, not only was I unaware until early last year when we began looking into not vaccinating our own children any further, but I was once again reminded just this morning when not a single one of the mothers who came to a playgroup I hosted were aware of the laws either in regard to vaccinating children and admission to school.

Let the CDC, the FDA, and the American Academy of Pediatrics be damned for their part in convincing unknowing new (as well as not-so-new!) parents that vaccinating their days old infants is the law and the only way to go. And shame on people like myself for blindly believing our doctors without looking into things further! If I knew four years ago what I know now....but hindsight is twenty-twenty. At least now maybe I can inform other individuals who may have otherwise gone ahead and let medical personnel shoot up their infant every few weeks with all sorts of harmful and unnecessary chemicals.

On numerous occasions, people have asked me, "Well, if you have stopped vaccinating your children, how are they going to attend school? The school requires vaccination records."

Oh.....the "requirement." Yeah, well, it's not a requirement and I wish the schools and doctors and everyone who is so darn pro-vaccine would stop referring to it as such. Yes, it is indeed a requirement that parents provide vaccination records in order for their children to attend school. However (and here is where the confusion comes in), showing the records is what is required - not getting the vaccinations.

So exactly how do we plan to have our children attend school without having all their vaccinations? It's very simple, really. It's this wonderful thing called a waiver. There are three different types of waivers - medical, religious, and philosophical - and all fifty states have at least one type that people can claim, with most states offering two or all three of them.

If you are interested in seeing which types of waivers your state allows, please visit the National Vaccine Information Center.

Please be informed of your rights and what you are putting into your child. Do it for your child and for yourself and do it for those of us who wish we had done so ourselves.....before our children became autistic.

UTV wins autism Stupid award!

UTV (Ulster Television) are not exactly known for their research capabilities and I don't think any of their presenters or producers even know what the word 'erudite' means, but a cursory google search would have imparted to them more information than what they wasted 9 minutes of airtime on in this short piece which aired this past Tuesday evening (link embedded above). If you want to see the program for yourself you can watch it on UPlayer until November 13th when it will be removed from their website thankfully.

The opening 5 minute vignette about autism featured a parent and her 7 year old son. There are a myriad of ways in which informed parents could have have been interviewed by UTV to help dispel the myths about our children and what they need. This program wasnt about dispelling myths though. It was about pandering to the existing system and asking for more of the same. Charities like AutismNI/AutismUlster could have selected the mother featured in the program as she laments the fact that she needs more of what groups like AutismNI/AutismUlster offer (training in TEACCH, Pecs, etc)

This parent lamented the lack of services, the long waiting list she encountered in having her son diagnosed (two years) as well as her fears for the future of her son once he leaves his special school at the age of 19. Much of her worry centered around whether or not her son would find employment when he reached adulthood.

This is where I started screaming at the television....I don't believe this parent deliberately set out to mislead the public, though I do believe UTV cynically chose this parent to gauge sympathy rather than inform. The viewer is told how her son received six months of a TEACCH program and how he was six years old before he received any benefit from interventions.

TEACCH is not appropriate for children with an ASD. TEACCH is a system of control set up to embed routine into the individual's day to repress and suppress personality, spontaneity and of course motivation. It is not a social communication program and in fact the TEACCH trainers admit that is so. It is cheap, and teachers love it because it allows them to put structure into THEIR day and keeps autistic kids and adults quiet. Coupled with the PECS system, it's a sure fire way to prevent any child from ever having an independent life, a happy life, a life of equity with his or her peers. It is NOT an intervention for autism.

The parent then went on to talk about how routine plays a big part in her son's life and the life of autistic children. If only she could have given this a bit of thought and hadn't internalised the lies that professionals fed her, she may have concluded differently. Clearly someone along the way had spun her a yarn, a yarn so big that all it needed was a self fulfilling prophesy, in the form of TEACCH and of course in the form of a charity that makes money at rolling out the said program. (by the way, does anyone know how much money AutismNI/AutismUlster has in its coffers?? anyone bothered to find out, or even how much they have spent or been awarded to roll out TEACCH?)

Why wasn't this parent asking for something else. She says that her son received no benefit from 'interventions' offered, until he was six years old. Maybe she believed (or was led to believe) that 'autistic' kids take a long time to learn and that well, you know, it's the autism, etc etc.

This parent went on, 'you do the best you can with what you have', (I don't know if she was referring to services or to her son). She went on to say that any employment for her son "would have to be very repetitive...there is work out there that is repetitive work and autism children would be the best at that because they do like to repeat everything and I hope that when xx is that age to go out into the world that there would be something for him, but at the moment it doesnt look very good there is no understanding of the autism world."

I doubt any one came knocking on this parent's door to give her and her family choices in the training of specific educational interventions that would individually suit and help her son. I also doubt that she were given much hope by 'professionals' who have worked with her boy. The fact she expects him to stay in the special school (dumping ground) system until he is 19 kind of verifies that.

Persons with autistic spectrum conditions do not like to 'repeat' everything. In fact, I would venture that many individuals with an ASD absolutely hate repetition, even to the point where repetition becomes an uncontrollable co-morbid condition of ASD. If you insist on using a TEACCH program for your child, however, repetition and 'routine' may become so ingrained in your child that he may very well not be able to cope or learn without repetition, it becomes a learned behaviour, purposefully and deliberately projected by those who promote TEACCH.


As I have said before there are over 300 well known educational models for autism now, probably a lot more, that I do not know about. This province has not delivered in any other way for our children so why would any parent think, or accept that an educational model offered (TEACCH) has any merit?

As an aside this parent also said in the UTV program that her child gets up in the middle of the night, and also has some major gut and bowel difficulties. I would ask her to investigate biomedical interventions, homeopathy, stress reduction techniques, cranio sacral therapy, neurological chiropracty, sensory integration and of course her child's diet. His problems are common and unfortunately are not addressed by doctors and paediatricians here until they become life threatening. By the way if you want any of these things, you will of course have to pay for them yourself. You will NEVER get a sensory integration specialist even though it looks like your son really really needs one. Sensory integration is not OT, is not Physio. It's a very complex art and isn't offered here. You need to go to England to get anyone that is any good. But, I thought I would mention it. In fact, your child's special school probably can't even spell sensory integration much less know anything about it.

And now on to you, UTV, you should be ashamed as you knew exactly what you were doing by cynically using this parent and her son to pull the heartstrings of your viewers and keep them watching. I didn't expect anything less though. Your station is not exactly known for rocking any boats. You didnt do your research. Either that, or else the lack of depth of this program was planned on purpose.

Below is an article on how one parent, who believed in his child created something unique and wonderful in terms of employment for persons with an ASD based on their amazing and unrivalled skills. Would this ever happen in Northern Ireland? I doubt it.

Our kids can work, and no they don't need repetition. What they need is for their strengths and abilities to be valued, honoured and respected. My son is never ever going to leave a special school, to enter into the workforce to make baskets or pencils for some government training scheme. If that's where you see your children heading, only one question - why? I say over and over again, if the floodgates start opening up in terms of realisation about how bright our children are, the government will be horrified. No longer will parents buy the crap fed to them about how their kids have learning disabilities, can't do this, or that. It only takes a few parents to lead our kids out of the darkness we have in Northern Ireland. I just wish you would find each other and not waste any more time because no one else is going to do it for us.

http://www.independent.co.uk/life-style/health-and-families/health-news/the-company-that-turned-disability-into-an-asset-1801627.html

Monday, October 12, 2009

Leftover Pancakes

You just never know when a photo op is going to present itself and this morning's breakfast proved exactly that point. Luckily, I keep the camera hanging in a designated location...well, the idea is that it is supposed to be in that location anyway. Most of the time it's even in there waiting to be used.


Both monkeys looking too darn cute. Notice the sink full of dirty dishes? That seems to be the rule rather than the exception around here lately. I'm sure it has nothing to do with the fact that I am burned out on rinsing dishes, loading the dishwasher, putting the dishes away, rinsing dishes, loading the dishwasher.....and on and on and on and on. My Crackville addiction probably has nothing to do with it either.

Apparently, eating leftover pancakes is something to jump for joy over....

Open wide.....

Sunday, October 11, 2009

They Ought To Call It "Crackville"

After caving in to the pressure from a few friends for me to join facebook back in January, I have spent a fair amount of time on the computer connecting with old friends by using facebook's chat and message features. I have watched hysterical YouTube videos, visited educational websites and news stories regarding the world of autism and the latest treatments, therapies, and research. I have shared in the sorrow of friends losing loved ones and prayed for them when other things in their life just aren't going so well. And now the latest, thanks to one of those friends (you know who you are!) I have become addicted to Farmville.

Farmville, my rear. They ought to call it "Crackville" because once you start playing, you are instantly addicted. Or, at least, I am.

I have been playing for two days now. Or is it three days? I don't know. Once you acquire an addiction, time seems to pass at a different rate of speed than when your mind is clear and free and not anticipating the next "high."

Anyway, I'm on level 9 now (which level are you?) and getting smarter about this whole thing. I'm organizing my crops so that they're not all willy-nilly and ripening at all hours of the day. I am planting specific crops with the forethought that they will be ready to harvest at times when I know I would usually have a break from chasing monkeys around the house, rather than worrying about say, my pumpkins coming due right in the middle of dinner. It's all about planning, you know.

Enough about Farmville, as my addiction is showing.

Today has been a lazy, lazy day. The littles actually slept until past 9am this morning. That almost never happens.

We had planned to go to a local landscaping place today because they are also featuring a kid-oriented family type atmosphere right now with hayrides and pumpkins all over the place and I'm not really sure what else. It's hard to tell when we are whizzing by the place in the truck and trying not to gawk so that others won't rear-end us or worse, be caught off-guard ourselves and run into the back end of someone else.

The landscaping place was the plan. But that plan did not include forty-some degree temperatures outside either. Yes, I am a wimp and I will be the first to admit it. Autumn is my favorite season because it means I start burning candles again and baking fall favorites and going out for drives on the weekends just to look at foliage on the trees, etc. etc. blah, blah, blah. So how ironic is it that I cannot stand cold weather? I can't. Plain and simple. Give me a plane ticket to somewhere warm and free lodging for about six months out of the year and I'd forget Indiana even exists. Back to reality though and the fact that what pays the bills is here.

Instead of braving forty degree weather, we have stayed inside today and have done a whole lot of nothing. Well, that's not entirely accurate. We have all had showers and naps. That is an accomplishment, especially considering Reiss took a shower on his own, got out and dried off, and dressed himself all by himself.

I am just not ready to get my cold weather gear out yet. So maybe we will visit the pumpkin place next weekend. You know, when it's even colder.

And The Winner Is......

Congratulations to the winner of the Betty Crocker Gluten Free Giveaway!!! It is........

the Queen of Cloth

My apologies for not getting on here sooner to make the announcement, as I had an almost-two-year-old using me as a jungle gym for the better part of this afternoon, making it next to impossible to get in some screen time.

Thank you for all the comments and I hope all of you will consider checking out my blog in the future for more giveaways, reviews, and rambling about meaningless things.

Just Leave Us Alone

Parents I know who have children on the spectrum often lament, 'if only "they" would leave us alone', our kids would be fine.

How true. How many times has your child been having a perfectly wonderful day and then someone says something, does something in response to you and your child? I suppose that the outcome of such situations is dependent on how you control your own emotions and behaviour. But sometimes, it's very difficult.

A perfect example of this is School Boards who make it their purpose to heap as much trouble, frustration, financial strain and anquish on you as they possibly can. All of this is in addition to what you are doing for your child at home and and in his community. A parent of child who did not have autism has very little idea and I doubt would even put up with it.

I believe our children mirror the beliefs, attitudes and fears of those around them. My child is not mean to other children, loves all those who love him and is devoid of most of those things that make some humans inhuman. Yet, it takes very little for him to 'trigger' others into cursing him (and me) and even less for others to treat him as something sub-human.

It's not just here in Northern Ireland. I was in a large American city recently and was in a queue waiting to pay for my shopping. My son saw something he wanted in the next aisle and was making it very clear to me that he wanted it. Up until that moment we had been having a perfect day.

An old man queued behind us with his trolley. By this time my son was on his haunches refusing to move. The old man said, if you don't get up I am going to run you over with my trolley'! I shook my head in shock at what this ole crone said and responded with something particularly pithy, vengeful and exacting. The old man recoiled in horror at what I said to him. Meanwhile, my child was oblivious to the old man's threat, and was still protesting on the ground. My son had been physically threatened by an 80 year old who probably had great great grandchildren. No compassion, no patience and no understanding. The best part was my son wasn't even in this man's way. He must have thought I 'needed' a lesson on child discipline, or rather child abuse!

Here in Belfast not too long ago, we had lined up behind a man in an ATM and my child said 'hurry up'(rightly so, the guy didnt know how to use his cash card and was taking forever). Before I had a chance to say to my child that what he said was inappropriate, this man turned around with a horrible scowl on his face, looked down at my smiling son and said, 'what did you say?' in a very threatening manner. I replied 'he said hurry up!'

Muttering something quite distasteful under his breath, he moved away and proceeded to stare at my son and me until we finished our business. I felt like calling the police and could only think about how my son would deal with such a situation if I wasn't there.

Finally, a month ago in yet another queue (queues are such fun) a woman who was standing behind me in what is a very typical Northern Ireland style (she was so close to me, I could feel her breath on my neck,and her trolley was rammed up against the back of my legs) she was 'tsk - tsking about my boy who was touching items in the next person's shopping basket.

I turned around to see where this annoying sound was coming from and saw a very hard looking woman. She was spray tanned, bleached blonde and clearly a victim of middle aged spread standing with her very young and very pregnant daughter. They both had that 'look', you know the one, particularly in some women with little self esteem who 'dare' you to stare them down.  My other children were with me, equally agitated as me about the carry on.

A bit of 'discussion' ensued between me and them. My son looked at these people with a huge smile, oblivious to their scorn and uttered 'hello'. Neither of them responded and my son said 'hello' again. I told him, 'some people don't know how to talk'. Who has the problem here?

Something in what my son was doing triggered the need in all of these people to react negatively. My son is a contented child and it amazes me how he brings out the worst in people. I can only surmise that either 1. there are a lot of very unhappy people out there, or 2. his failure to comply with their very selective social rules is a threat. Obviously the 16 year old very pregnant young woman who was behind us did not comply with certain rules either and I could very well have made a number of judgements and even comments. Considering her mother was rather formidable looking, I doubt anyone would ever contemplate such behaviour at least whilst she was around. It was ok though for them to chide me and my boy for something completely trivial and unimportant.

The problem, at least in our house, is never the 'autism' - it's usually you.

Friday, October 9, 2009

Restraint of children with 'special needs' in our schools

http://www.youtube.com/watch?v=ninImoQbX60

The above link takes you to a video of an Illinois police officer brutally beating a youth in an Illinois special needs high school.

15-year-old Marshawn Pitts was beaten by the police officer, because his shirt wasnt tucked in. Pitts was a student at the Academy for Learning High School in Dolton, which claims to be a school for children with learning disabilities. In this video, the officer, whose name has not been released, is seen slamming Pitts (who has a learning difficulty) into lockers, and then slamming him facedown on the floor. (This technique, known as 'facedown/takedown' has caused the deaths of some 20 people so far.

Ok, Northern Ireland is not Illinois. Our problems are different but I do wonder why some schools in Northern Ireland are receiving staff training on 'restraining young children with special needs'. A number of schools have sent their teachers on 3 day courses on how to 'restrain' our kids in a classroom.

My own boy has very rarely needed to be 'restrained' except in his car seat and the seat does that. The way in which I conduct myself with him, teach him, respond to him, negates any need for 'restraint'.

It's sort of like mental hospitals and group homes - you wouldn't build them unless you intend for them to be used. What is the belief of teachers who feel the need to take a 3 day course on how to physically manipulate/overpower/oppress my child when in fact he has a fully functioning brain and responds so much better to trust, compassion and understanding?

Why is it that so many children in 'special schools' 'behave' in a manner that teachers think needs 'restraining', either for their own safety or the safety of their peers/teachers.

Something is very wrong with this picture. I don't know if you know this parents, but your child's teachers and aides are being trained in how to 'hold' your child in a quasi arm lock and march him down the hall. It's all made to look very compassionate and P.C. but its adults weilding physical power over your child, just the same.

very VERY worrying.

Watch the link to the video above and see how its done 5000 miles away. Incredible is the belief system that tells a police officer to brutally assault a child for a shirt tail hanging out. What are your own children being 'restrained' for and why? In particular watch towards the end when the teacher carrying files just walks past the frenzied attack and doesn't even give a blind bit of notice. She just non chalantly carries on with her business whilst a vulnerable youth is brutally beaten.

You can bet if there is a 3 day course on child restrain, that it's going to be used on your child at some stage, and possibly for no reason whatsoever. Funny, how there is no 3 day course on how to listen to children, or a course on how to examine your belief systems on what is 'important', or on how 'attitudes' colour judgement.

I personally am thinking of designing a course for teachers to help them understand why they believe what they believe about our children. A lifetime of 'attitude', belief, judgement, etc is wrapped up in every teacher. Our children, so very vulnerable, are prone to being the butt of teachers beliefs about 'naughty' or 'unruly' behaviour.

If a teacher had the crap beat out of him as a child, or if his parents constantly nagged him, judged him, criticised him, how do teachers shuffle off the effects of such a legacy, when they are working with our children?? When it comes to 'restraining' our children, what stimuli triggers a response in a particular teacher warranting in them, a need to restrain??

Do you think teachers would attend such a course? Would they be open enough to spend 3 days examining their belief systems, thoroughly examining themselves, before they pre-judge our children as something needing 'restraint'??

Hmmmmm. There are many many teachers out there who have never even heard of sensory integration, don't know what it is, and certainly don't know how to reduce/eliminate environmental triggers that cause our children to 'react'. There are to date, no courses that I have seen offered, training teachers how to re-design their classrooms, modify their curriculums and offer techniques on how to calm over active nervous systems. Further, I have not seen a course for teachers on how to 'talk' to our children, to teach them to self advocate, to learn how to express their frustrations at a school system that lumps them in classes of 28/30 and expects them to sit at desks for much of the day, or eat food in the canteen that sends them doo lally.

The cart is being put before the horse here. Techniques in ensuring 'low arousal' in the classroom, examination of behavioural techniques (antecedent, behaviour, consequence) and so much more would be way more effective than just training teachers carte blanche in how to restrain. Our kids' brains are getting 'restrained' in the process, much less their trust of adults.

It's all very sad.

Thursday, October 8, 2009

Betty Crocker Gluten Free Giveaway!!!!

Okay, folks, this is my first giveaway and I am quite behind in doing it. A deal was made between BlogSpark and myself and while they held up their end of the bargain, I am embarassed to admit that - due to an inkling of ignorance on my part about which I won't go into detail - I have not kept up my end of the deal.....until tonight. Thank you to BlogSpark and Betty Crocker for providing me with this opportunity. At the same time, I offer my apologies to BlogSpark and to Betty Crocker....but enough of the formalities, let's get on with it.

BlogSpark provided me with a wonderful Betty Crocker gluten-free "Sweet Treats" prize pack and in exchange for it, I agreed to give reviews of the products and - the best part - hold a contest where the winner will receive one of the same prize packs I received. It's a win-win! My contest winner will get to read reviews of the products and then have the chance to try them for free. The rest of you, well, you just get to read the reviews - you will have to go buy the products if you want to try them. More details on the contest later though, so keep reading!

The prize pack I received and the contest winner will receive consists of the following:
Betty Crocker Gluten Free Yellow Cake Mix
Betty Crocker Gluten Free Devil’s Food Cake Mix
Betty Crocker Gluten Free Brownie Mix
Betty Crocker Gluten Free Chocolate Chip Cookie Mix
Betty Crocker grocery tote
magnetic grocery list and pen to make shopping easier!
(For more details on the mixes, check them out Betty Crocker)

To date, we have tried all but the Devil's Food Cake Mix. With any luck, I will be making that one this weekend.

When we made the yellow cake mix, it mixed up, baked up, and looked just like a regular yellow cake mix from a box. Knowing what I know of some gluten-free products on the market though, I was skeptical as to how this cake would taste. Looks can be very deceiving....and sometimes in a very bad way.

Luckily, the Betty Crocker Yellow Cake Mix was awesome. If I didn't know it was gluten-free, I would not have guessed. It had a little different taste and texture than a regular mix but not different in a bad way - just that, different. It was probably one of the moistest (is that really a word?) cakes I've had from a box mix. Of the three mixes we have tested so far, this was our favorite one.

About a week or so after making the yellow cake mix, we tried the Betty Crocker Gluten Free Brownie Mix. The mix yielded a small pan of brownies - I wanna say 9x9 is what we made ours in. The brownies themselves took longer to bake than the box directions indicated. However, to Betty's credit, my oven has been acting a bit nutty so I'm not certain whether the problem was with the time indicated on the box or if it was just my oven rebelling against me.

We baked (and baked and baked) the brownies and the results were a gooey-chewy center and crunchy-chewy edges. If you have people in your family, like we do, who have different texture preferences, this is a very good thing. Overall, I give this product a thumbs up. But having said that, at the price the grocery stores are charging for these gluten free mixes, I would really like to see the mix make a larger pan of brownies. Without a coupon or sale, you can expect to pay about twice the price of a regular mix and only get about 2/3 the amount of baked product.

Finally, I will forewarn anyone reading that I am not typically one who sugar-coats things and although I greatly appreciate BlogSpark and Betty Crocker providing these products to me at absolutely no charge, I do feel it would be a disservice to my readers and Betty Crocker if I talk up the Betty Crocker Gluten Free Chocolate Chip Cookie Mix with a glowing review. Simply put, it would not be how we truly felt about this product.

The chocolate chip cookie mix was, for us, a flop. The mix yielded very thin, flat, flimsy cookies that practically fell apart with a touch of the hand. Now if that's something you prefer in a cookie and you are eating a gluten free diet, I wholeheartedly recommend this mix. Was it so bad that we threw the cookies out to the birds? Of course not! That would be wasteful and we were able to resolve the problem by stacking and squishing two cookies together and eating them in such a way that did not allow them to fall apart.....very much. The cookies themselves tasted pretty good but baking isn't just about taste. It's about eye appeal, texture, anticipation and so on.

Will I buy any of these mixes again?

I can certainly visualize buying the yellow cake mix (actually, I have already done so probably four times!) and the brownie mix again but I'll stick to my favorite "from scratch" recipe when it comes to gluten-free chocolate chip cookies.

Now, for the giveaway.....

Simply comment on this post and tell everyone why you would like to try these products....and preferably not just because they are free. No need to give your full medical history or any private details you prefer not to share but you get the point. If you'd like to share a favorite gluten-free recipe, even better.

Sunday, October 11th at 12PM (that's noon - NOT night-time!) Eastern Time will be the cutoff for comments to be considered as "entries" for this giveaway. All comments after that time will be just that, comments (but appreciated just as much!). At some point after that time on Sunday, I will draw and announce a winner. The winner will be required to provide his or her email address to me (if you don't already have it on your profile) so that I may provide it to BlogSpark. The winner will then be contacted by a representative at BlogSpark requesting a mailing address.

If you have any questions, feel free to ask by commenting to this post or by emailing me at the address listed on the bottom left of your screen when you float your mouse over "Email" on my profile page.

The contest begins now...............Good luck to all!!!!

Build a school, build your own dreams

In Northern Ireland, the hope of attaining a ‘good’ education in a ‘good’ school (whatever that is) can depend on a number of things. For any child, some of the obstacles to attaining a good education include whether or not your child sat the 11 Plus, what postal code you live in, whether a child’s parents value education and are proactive about it and of course the academic ability and/or motivation of the child.

In terms of the 11 Plus exams, many parents are well aware that for their children who did not sit the exam that their child sat ‘in the back’ so to speak while the 11 Plus pupils got all the attention.

Separate curriculums, even separate classes are formed between the ‘smart ones’ and the others. Don’t believe me? Ask your son or daughter who did not sit the exam, what their schoolwork consisted of, just prior to and following exam time. Were they colouring in a lot of maps and being kept busy with ‘artwork’ while their peers were busy cramming in concepts, facts and figures with the full attention of all the teachers?

We all know there is a two track system in Northern Ireland best exemplified by the grammar schools. Regardless of the 11 Plus being phased out, it has already done its damage.

For our children on the spectrum the obstacles set against them include all the above and so much more. Large class size, over stimulating environments, curriculums that have not been modified, teachers and classroom assistants who have not been highly trained, teachers who can’t cope, the list goes on and on. Put our children in a class of 28 and most of the child's day could well be spent having teacher and aide calming down his overworked nervous system. My own child is incredibly bright. I know this. His 'active' presentation, however, would prevent him from coping in such a large class. He could be a veritable genius but if his sensory system is in overdrive, he won't be able to filter information in or out. So, does this mean special school for my child?

I do not want my child or any other child for that matter to be shunted into a ‘special’ school, the connotations of which, so often mirror reality. What I do want, however, is my son’s education to be specialized enough to meet his educational needs. Attempting to fit my child into a mainstream school where even ‘typical’ children are failing is not the answer.

Northern Ireland has a number of empty schools, schools that with very little effort could be used to create ‘autism’ schools. There is one of these empty schools near me. A good friend of mine pointed out ‘why are these schools lying empty when your child needs a school?’ Very good question. She further asked, ‘why don’t parents get together and create their own schools out of these empty buildings for their children?’ Another very good question.

There is no school available in Northern Ireland that is suitable for my child. The fact that a parent would have a very hard time obtaining a classroom assistant for their child in one of the ‘special’ school says it all – these people seem to think they are more ‘special’ than our children. Unfortunately, I do not see 'special' outcomes coming from these schools and in fact what I see is special schools that run from primary age to graduation. What exactly is the belief system of placing our children in a school that covers their education for 14 years. Clearly no one expects them to venture outside the special school system. This is so very wrong. This is the belief system that parents must vehemently counteract if they have any hope for their children's future.

If parents want schools for their children, schools that will specialize and will honour the opportunity to help our children, then parents must start demanding them. Why should we as parents accept what is on offer? The product is well past it’s sell by date and is actually starting to mould.

Have parents in Northern Ireland succumbed to the system just like the government and school boards hoped they would? Since when do we have to accept anything? Instead of governments telling us what to do, it is they who should and must listen to us, not the other way round. I see and hear parents complaining all the time, each carrying out their own personal battle with the authorities and schools, each in isolation, each signifying nothing to the bigger picture except isolated bouts of disruption. Even if a parent launches an appeal and tribunal regarding the education of the child, unless it's going to create a precedent in law, the impact of such is not felt in the wider community (despite the danger of potentially causing a nervous breakdown in the parent due to stress)

All of these isolated voices of parents that are battling the system get lost and never come together. Despite the fact that there are five autism charities in the North, the voices of parents continue to make very little impact. Parents are separated, corralled and effectively silenced by the fact they are not coming together as one.

There is a big difference between being bitten by one spider and being bitten by ten. Parents could be those 10 or 1000 spiders. They would need to be because they are fighting mosquitos, the pesty bug that will suck the blood from you and your child if you don't swat it.

Who will take up the gauntlet in Northern Ireland and bring the voice of all parents together? Our children are not 'special', no more special than any of God's other creatures. All children are special. Our children are, however, extraordinary and exceptional and I truly believe that children who have autism intimidate a lot of people particularly those who fear autism and do not or will not make efforts to understand the condition.

If you are a parent of a child who has a diagnosis of autism you know how intelligent, intuitive and sensitive your child is.

I personally can recount stories to you about my child that I have never heard repeated by another parent. My heart has soared at some of the things my son has achieved, things that have been so incredibly and awe inspiringly brilliant!

Every parent, without a doubt has some amazing stories to tell about their child. Are teachers and the Department of Education afraid of what our children might achieve? It would set a very dangerous precedent if our children started 'achieving' beyond the belief systems of these people! A veritable 'pandoras' box would soon open. There would be no going back to suppressing and repressing our children and their parents. The Department of Education, I think, is terrified of providing opportunities for our children to grow because the flood gates would open to possibilities and all of that costs dearly. Best to keep parents and their children in a holding pattern. It starts with the negative attitudes of the diagnosing paediatrician and it ends with your child still at home at the age of 25.

I ask all of you who are parents to take one hour and really think about what kind of educational environment you really want for your child. Try to exclude the niggling comments from your child's teacher that he is 'happy' (he might not be happy at the age of 18 when he hasn't got the skills to get a job or a girlfriend) Talk to your fellow parents and compare notes about what you really want for your child. Then ask yourself 'are these things achievable?'

I believe all things are possible but that nothing comes unless the work is put in. No one is going to work for our children without parents becoming vocal, empowered and fully accountable. My own child's education is my responsibility and I have not and never would leave such an important part of my child to anyone else. Not only am I responsible for seeing that he achieves, I am also responsible to ensure he is not permanently damaged by the school system. We have all seen this happen too many times.

If anyone out there is interested in creating 'good' schools for our children, please let me know. If necessity is the mother of invention, there has never been more need. If anyone tells you it can't be done, question their motives and ask them why they believe what they say is true. Only I know what my child needs and only I know what I want. I expect as parents, you are the same.

We can change the future for our children. 'Tick tock, tick tock....what are we waiting for?

Sunday, October 4, 2009

We Need Someone In DC Fighting For This...

Thank you, Christine, for posting a link to the "Bill of Rights For Parents of Kids With Special Needs" over at To The Max.

Before I read the profile of the writer of the "bill of rights," I would have sworn she has a child with autism. She doesn't. She has a child, Max, who had a stroke at birth. It is amazing and, at the same time, uncanny how her bill can apply to parents of children with all types of special needs.

I highly encourage anyone to read the "Bill" - whether or not you have a child with a special need. It holds a lot of truth and humor.

Trash In, Trash Out

What's the old saying?

"You are what you eat."

Well, for lunch today I ate trash and now I feel like trash. I didn't actually eat trash but I definitely feel like I did. I ate an Angus burger, french fries, and an orange shake from McDonald's. Even as I was stuffing my face, I told my husband "The best part of this meal is the ketchup." I didn't get any ketchup packets from the drive-thru, so we were eating our own Organicville Ketchup, which is just about the best thing since sliced bread.

So anyway, I don't feel well and frankly, this wasn't the best time of the month to sabotage my body with junk food......if you know what I mean.

Last night we built a nice campfire in the firepit in the wooded area of our property. We roasted marshmallows and froze our bumbums off. We thought Reiss would really enjoy it and he did for a few minutes. The rest of the time he talked about "home pants" (his word for jeans) and kept wanting to go back up to the house to check if the home pants were dry yet. I had washed a load of jeans and put them in the dryer before we went down to the fire. Before walking out the door to go down to the fire, I turned the dryer off. I knew the jeans weren't dry but telling Reiss that wasn't enough. He had to check for himself.

Reiss has been obsessed with clothes for a long time but these last few days he has had tunnel vision for home pants. He wants to play with them, talk about them, change his a few times per day, and gets especially bent out of shape if his get something on them. Good times......

If these pictures or mention of the campfire seem familiar at all, you may recall we did the campfire thing back in May too. Milla's wearing the same jacket but Daddy and Reiss were wearing glasses back then - back before James went and got contacts so that we could get Reiss to stop wearing his real fake (real frames, fake lenses) glasses just to be like Daddy.

Reiss with Daddy helping him hold the roasting stick in the fire.

Milla hanging out in a chair by the fire. That only looks like a milk mustache. It's actually marshmallow goo.

Friday, October 2, 2009

SHAM - Autism Bill - Everybody Now Knows!

2 October 2009

Top doctor's autism bill concerns


NI's chief medical officer has said he has "significant concerns" about proposed autism legislation.

Dr Michael McBride said it could lead to discrimination against those with similar disabilities who have not been diagnosed on the autistic spectrum.
He warned the assembly's health committee that parents could seek an autism diagnosis to access facilities.

Arlene Cassidy of the charity Autism NI said she was "astounded" by Dr McBride's comments.
"I find the chief medical officer ill informed about the purpose of the Autism Bill," she told BBC Radio Ulster.

"This is a good thing, it is about building upon the good work of the departments of health and education - this bill is about joining up government."

Dr McBride said he had a number of major concerns about the Autism Bill (NI).
“ Legislation would encourage more strategic planning regionally across all departments ” Arlene Cassidy Autism NI

He said he was worried about the "substantive administrative costs that would be incurred and the lack of clarity over how the legislation could be put into operation, given our current equality legislation".

"I believe this legislation could discriminate against individuals who could have a similar range of disabilities such as speech, language and communication problems but are not on the autism spectrum," he added.

His comments were backed by director of mental health Dr Maura Briscoe, who warned the committee the bill could create a hierarchy of disability and create labelling "not to the benefit of the people of Northern Ireland".

An action plan to improve services was introduced earlier this year, but Ms Cassidy said legislation was necessary to ensure a multi-agency approach.
"The autism action plan is a positive step forward but it is for the Department of Health - autism is a holistic problem, it is a lifelong problem and involves other government departments," she said.

"People involved in the action plan have found they haven't got co-operation from other departments, so legislation would encourage more strategic planning regionally across all departments."


'Support'
One of the bill's supporters, SDLP assembly member Dominic Bradley, told the BBC he remained confident the bill would eventually be passed despite the objections of Dr McBride and Health Minister Michael McGimpsey.

"I don't think it's the end of the road - we have the support of the majority of political parties and indeed we did have the support of the Ulster Unionist Party until recently," he said.
Mr Bradley said cross-departmental planning would save money by removing "duplication of effort".

Ulster Unionist peer Lord Maginness, who was involved in drawing up the autism action plan, said introducing legislation would be costly and time-wasting.

"Based on the needs of parents, carers and users rather than the demands of a voluntary group or politicians, we've got a lead autism director in each trust, a project team and will soon be able to assess every two-year-old child in Northern Ireland," he said.

listen live on BBC IPlayer here: (fast forward to 1 hr and 42 minutes for this particular 9 minute clip) http://www.bbc.co.uk/iplayer/episode/b00n01vl/Good_Morning_Ulster_02_10_2009/

Story from BBC NEWS:http://news.bbc.co.uk/go/pr/fr/-/1/hi/northern_ireland/8286565.stmPublished: 2009/10/02 08:50:48 GMT© BBC MMIX


**Let's remember Arlene Cassidy's references to 'looking on the bright side', following the Middletown Centre for Autism fallout in May this year.

In this clip from 18 May 2009,(
http://news.bbc.co.uk/2/hi/uk_news/northern_ireland/8056444.stm) Ms Cassidy was asked her opinion over the Middletown debacle. She responded, "maybe this provides us all with an opportunity...I am a great believer in looking for the silver lining and maybe some of the funding diverted to Middletown can be used otherwise."

Yes Ms Cassidy, I agree with you on that one. With regard to the Autism Bill and the exorbitant amount of money it would waste, your previous comments regarding 'diversion' of monies are applicable here too. Let's 'divert' money for this ridiculous bill, to those who need it most, namely our children. Seriously, what has changed for our children in the past 20 years, actually the same 20 years that AutismNI/AutismUlster has been in existence? How many ASD specific schools with trained teachers would the Autism Bill buy? How many youth/adult employment transition schemes would it fund? The comparison of Northern Ireland to the Republic or to England is dire in terms of what is available for our children. We need real early intervention, not half hazard 'attempts'. We need a complete overhaul of the belief systems of those who work with our kids in this province. Our children need so much - legislation guarantees nothing - in fact it might even make things worse by creating a restrictive perimeter around what can/cannot be done.



Autism in Northern Ireland seems to be more about wasting money than anything else. 7 million pounds has already disappeared down the Middletown rabbit hole, much of it having gone into the pockets of Directors.


The fact our 'legislators' allowed 7 million pounds to be wasted, that it was done 'legally' is not very encouraging. What we could have done with that money!!

Let's not make the same mistake again. The Autism Bill is a fruitless, redundant and ultimately damaging idea and I am so thankful that some people in Northern Ireland are seeing sense and that others are finally having their voice heard over the din of others' egos and career ambitions.


IRIS ROBINSON tells us like it is?

Hello dear readers. We are at a major crossroads regarding the future of our children and all individuals who have an autistic spectrum condition who live in Northern Ireland.

Yesterday (1 October 2009) in Stormont, a meeting took place of the Health, Social Services & Public Safety Committee. At 2.00pm a Departmental Briefing on Proposals for the Autism Legislation began. If any of you were party to the proceedings you would be reeling with shock. Why? Kieran McShane, parent and ASD Strategy member suffered a verbal outburst from Iris Robinson, MP, DUP in a discussion about the taking forward of the proposed Autism Bill.

Kieran McShane: "I am a parent and carer and a member of the Autism Strategy. Nothing in this bill is for me. "

Iris Robinson: "You may be a parent but I am an elected representative!"

For those of you out of the loop, there is much afoot regarding autism and politics at the moment and if you have not already done so, you will be very interested in seeing this: www.dhsspsni.gov.uk/asd_strategic_action_plan.pdf . Go to page 38 to see a diagram of how parents are going to be key to the future decision making regarding our children.

I personally, am appalled and highly insulted that Iris Robinson DUP appears to hold the view of her friend Ms Arlene Cassidy CEO AutismNI/AutismUlster higher than the views of parents, carers and service users.

I personally cannot equate Ms Robinson's comments yesterday to be based on anything else than what she is being fed by AutismNI/AutismUlster. Who wants this autism bill except AutismNI/Autism Ulster? We have laws here regarding all disabilities and it is my opinion that fear is rising in the hearts of certain organisations both statutory and voluntary that parents are going to be furnished with the power, authority and mandate to shape the future for their own children. Iris Robinson in my view, now has the responsibility to prove to her electorate who she is representing.

If you are a parent, a carer, or an individual with an ASD and you live in Iris' riding,she desperately needs to be re-educated by you.

Does Iris Robinson represent ALL of her constituents who have varying 'disabilities' or does she represent only those with ASD I wonder. Will she fight for legislation for those with cerebral palsy, down syndrome, the blind, and the physically disabled, under section 75? Is she as 'well-acquainted' with the leadership of these groups as she is with Arlene Cassidy? Iris seems to have a lot of time for 'autism' and AutismNI/AutismUlster. I suggest to other 'disability' groups to get cracking and bend her ear equally.

Nothing escapes the attention of parents where politics is concerned. It's not about politics - it's about our children and we are watching, watching very closely.

So many questions. Will the rest of Northern Ireland's carers (185,000) be meted the same treatment as Iris Robinson projected onto Mr McShane yesterday just because she is a political representative? I would not like to think so.


If you would like a dvd copy of the DHSSPS proceedings from yesterday for your own records, you can order your own copy for free by emailing: Sound&Vision@niassembly.gov.uk. In the body of your email advise the proceedings, and the date they occurred. Don't take it from me, watch what is going on for your own eyes.