Tuesday, March 31, 2009

Seven and Seven

No, not Seagram's 7 and 7-Up.

See the pink award on the right that says Kreativ Blogger on it? The award was given to me by Viv at My Mommy Needs a Timeout. The rules of accepting the award are that I need to share seven things I love and then pass the award on to seven other bloggers whose blogs I love to read.

I am assuming that others who have received this award consider loving their family as an obvious "given" and do not include them on the list of seven things they love, so I will say it here: I love my family but seven other things I love and in no specific order are....

1) A good cup of coffee. My favorite way to drink coffee is with enough real full-fat cream to turn the coffee a nice caramel color and with enough plain old refined white sugar to make most people grit their teeth just thinking about it. However, since restricting my family's diet so much, getting a good cup of coffee has become quite a challenge. Since we do not eat casein, cream is out. Refined sugars are a no-go as well, so no sugar. In the several months of eating so strictly, I have found a wonderful cream replacement - coconut milk - but finding a suitable sugar replacement still eludes me. And before anyone suggests Stevia, really, I've tried it. I've tried to talk myself into liking it. I've tried to use it repeatedly to see if it will grow on me...it doesn't. I've tried all the "natural" products and none of them sit well with me. I want my sugar!

2) A good long, hot shower in peace. It's amazing the things we take for granted before having children. I rarely get a peaceful, relaxing shower anymore. If it's the weekend, my husband and son have usually used most or all the hot water and by the time I get in, the water either feels nice for about fourteen seconds or is cold altogether and I may as well be living with polar bears. During the day when I get a shower, there is usually at least one child at the shower door whining, screaming, crying, or all three.

3) Healthy skin. I have taken great pride in the care of my skin over the last several years and I don't mean to brag but I think it has done me pretty well. Maybe not the last year or so with all the stress we have had around here, but overall, I think I still look a few years younger than my actual age of pushing-forty-just-around-the-bend.

4) I love to eat. Yes, I said it. I'm not afraid to say it. For people who battle weight issues, like I do, I think it's important to be able to admit this one simple thing in life. Yes, I love to eat but I am definitely a food snob. A Hershey's bar is not a treat for me. Give me some good high-quality European dark chocolate and that is a treat. Give me food that is full-fat and cooked with quality ingredients and I'm in heaven. Although I crave a good greasy hamburger from a drive-thru now and then, I would take a home-grilled steak over a burger any day.

5) Finding hidden treasure. The kind at the end of a rainbow or marked with an "X" on a desert isle would be nice but I like finding little places no one knows about. Like the incredible mom & pop pizza place out in the middle of a hick town near us. Several years ago, no one knew about it. Now, everyone knows.

6) Books. Oh, how I used to read B.K. - that is, "before kids." I still love to read but I don't have as much time to plow through books now. Before having children, I used to devour a book in a day or two. Couch potatoes can keep their widescreen tv's. I'll take books over tv any chance I get. If it wasn't for my husband, I think I could live without a television. My husband is not a couch potato by any stretch but he does like to watch tv more than I do.

7) Sleeping with my babies. Words cannot describe how I love waking up next to my baby girl. I love watching her sleep. I love hearing her breathe next to me. I love when her tiny little warm body curls up next to me. My son co-slept with us too, but is now in his own bed. I don't think parents who use cribs really grasp what they are missing out on.


And for the seven people I like to stalk, as I refer to it....
I love reading Viv's blog but she gave me this award so it doesn't make sense to include her because then she would have to do the whole "7 & 7" post again herself.

Seven other blogs I love reading are - and, of course, in no specific order...

1) 16 Blessings' Mom If you read my blog at all, you know I love large families. I love the Duggars but what I love about this blog is that it's "real" - not edited footage on tv. And Congratulations are in order because there is another baby on the way....I wonder if she will change to 17 Blessings' Mom???

2) Smiles & Trials Christine is simply amazing! Congratulations are also in order for this family, as they will be adopting their twelfth child from Ukraine very soon. Christine always has inspiring music playing on her blog. I love it but this is a good thing to know if you're playing on the computer in the same room as a sleeping child, as I often do.

3) Cassie-Ann's Life Six children under the age of ten and another on the way! What can I say? Another Congratulations!

4) Maybe We Are Rabbits I only found Eloise's blog a week or so ago but I love it. Eloise and her partner are both raw vegans. Before going raw, they were both vegan. The transformation from vegan to raw vegan began only around two months ago. Eloise gives daily accounts of how they are learning and expanding their diets with a variety of plant-based foods, kitchen gadgetry, and good old nature. It's interesting and very useful when we can cull information from others - even from those who lead very different lives than our own.

5) Gluten Free Naturally A great resource for out-of-the-ordinary gluten-free recipes.

6) Our Aussie Half-Dozen She always has the cutest stories to tell.

7) 7 Kids' Mummy Another great Aussie Mommy blogging her own "Mummy" chronicles.

This was really difficult to choose only seven blogs because I read and follow so many. If you're reading this and you know I read your blog but are not on the list, it's not that I love your blog any less. It was mainly having to decide who has commented on my own blog with advice and also whose blogs are most frequently updated. I love you ALL!

Thanks again, Viv!!!

Monday, March 30, 2009

Purposely Preclusive at Potty-Training

Notify the authorities: I have officially arrived in Hell.

This week - Spring Break - we are making another official attempt at potty-training Reiss. Besides a few half-hearted sessions of singing, making funny faces and sitting on the potty while waiting for Reiss to produce even the tiniest of tinkles into the bowl, there have been two other times when we officially declared a lockdown for potty-training.

The first attempt to potty-train Reiss was when he was still two, but almost three years old, when he was on a break between Spring and Summer sessions at the Parent's Day Out program he attends. The last attempt was a two week break he had in between Summer and Fall sessions of PDO last Summer. That particular try ended on Day Three - a day that could only be summed up as a monumental disaster. We were using the underwear-only method and going to the potty every fifteen minutes. Four hours and twelve pairs (not an exaggeration) of wet and/or dirty Elmo underwear later, I was mentally done and so marked the end of that attempt to convert Reiss from a toddler in diapers to a Big Boy.

Now he is closing in on four years old and yes, still in diapers and Pull-Ups. Yes, it's disappointing. Yes, it's depressing. No, we do not take our disappointment out on him. Fortunately, from what I read and hear from other parents, this is not terribly uncommon for autistic children to be Reiss' age and still in diapers. Unfortunately, that fact does not lighten my mood at all.

I am doing what all the books say to do: set the child on the potty every fifteen to thirty minutes. Have the child drink lots of fluids. Sing songs. Make funny noises. Talk about how big girls and boys have so much more fun when they use the big potty. Talk up the awesome treats the child will get as a reward for peeing on the potty.

So far, nothing.

Here is how our bathroom sessions go:
Sit Reiss down on the potty with pants and Pull-Up pulled down.

Me: "Reiss, quit pointing your penis up."
Me: "Reiss, point your penis down."
Reiss: "When you point the penis up that means you get pee in your face."
Me: "Yes, that's why you need to point your penis down."
Reiss: "Wanna point the penis at Milla and get pee in her face." (laughing - him, definitely not me)
Me: "No, that's disgusting and not nice."
Reiss: "Wanna pee on Milla."
Me: "Reiss, point your penis down."
(Reiss sitting on the potty like it's a recliner.)
Me: "Reiss, please sit up."

It's going to be a long week. Some Spring Break....Why couldn't I at least live somewhere warm where it's not a dismal forty degrees outside?

Sunday, March 29, 2009

Fun, Food, and Firetrucks!

A few weeks ago, my husband and I had a -very rare for us - "Date Night." Our version of Date Night is different than that of most couples we know and would most likely constitute "Lame Night" in their opinions, but it worked for us and we had a good time. We went for a quick dinner at a new Asian buffet and then on to shopping for a kitchen table, which can be seen in a photo a few posts down from this one. While getting the table, we also picked up two microfiber (besides leather, a parent's best choice in fabric) beanbags for the kids....although I think I get more fun out of them than they do. Reiss and Milla rough-housing on the beanbag chairs.
Awww.....They are so sweet together when they're not trying to clobber one another.

A rare moment caught on camera with both of them looking at the camera.

Milla working at the office. She loves to type away on Baby Type.




Okay, don't any of my "Raw" friends get excited that another has joined your ranks. I do see the health benefits of eating so much produce but I enjoy most of my food cooked. Unfortunately, I'm a hot food kind of gal - always have been. The above photo is my first attempt at a "Groovy Green Smoothie." I don't know if this is the proper term but I abducted it from Green and Crunchy. My version was very simple in comparison to most raw smoothie recipes I have seen. My version: half a blender full of kale, five strawberries, small handful of frozen raspberries, and a very ripe banana. It was good but I have to admit that it was better when I drank without looking at it. That green color is one hard pill to swallow.......

How can anyone say low-carb dieting is unhealthy? Is this beautiful or what? My dinner last night: steak fajitas on a bed of organic mixed greens and homemade organic guacamole. It was so good. This is the kind of food that makes me actually want to diet.



Yesterday, we promised Reiss we could go look at the firetrucks. Unfortunately, that didn't happen because he kept doing things to get in trouble. As is so often the case, timeouts were totally ineffective so we had to go one step further. His last infraction of pulling Milla's ponytails was the straw that broke the camel's back and his chances at seeing the firetrucks. He had one heck of a meltdown but we had to let him know there are consequences. He was pretty decently behaved this morning so we decided to take him to see the firetrucks. The fire station close to our home is very accomodating and welcomes us anytime we go.

Milla standing in the ladder truck.

Reiss looking in the "mirror" door of the ladder truck.

Reiss with one of the masks on, sitting in the back of the ladder truck.

If I didn't know better, I'd think he was posing but in reality, this was taken while he was in action.
It was a fun morning and we praised him up one side and down the other for being such a big boy and being so well-behaved at the fire station.

Saturday, March 28, 2009

Mark Your Calendars for April 6th!!!

If you have any interest in learning more about autism, mark your calendar for Monday, April 6th at 8PM. Discovery Health Channel will air Unlocking Autism. For more information on the program itself, click on the link. After you arrive on the show's link, there is an option to have an email reminder sent to you if you wish.

My husband and I will definitely be watching this program and are looking forward to getting other families' perspectives on living with and raising children with autism. As the previews mention, there are so many different types and symptoms of autism. With that in mind, following the program - probably the next day or within a few days of the airing - I will offer my own viewpoint of the program itself and whether my family's situation matches or is similar to any of the families interviewed.

Friday, March 27, 2009

Middletown Centre for Autism - 6 Year Wait and Counting

Middletown Centre for Autism Excellence - sounds good doesn't it? Despite the fact it was announced in April 2002 and millions upon millions of pounds culled from the special needs budget have been thrown at it, not one child has benefited. At this very moment more staff are being recruited on top of the 12 directors and numerous existing staff, all who have been collecting paycheques for up to two years already. Northern Ireland is currently suffering a billion pound deficit and special needs budgets have been cut for classroom assistants and statements. Children with an entire range of needs are being affected, yet Middletown Centre for Autism continues to attract money with little effort.

Obtaining a Statement of Special Educational Needs, a legal document outlining educational need and provision for that need, is becoming more and more difficult to obtain in Northern Ireland. Children who deserve a Statement are being relegated to special schools or placed in mainstream schools without any support or right to support. Most children in Northern Ireland who have special needs walk into schools with no rights, but this Centre will offer a chosen few specialised help costing 25,000 GBP each. That would pay for 2 classroom assistants for each child for a year.

The Middletown Centre for Autism, located in Armagh, Northern Ireland, is a political move on behalf of the North/South governments to split costs and appear to look like they are committed to doing something about autism to make up for the fact that they have done very little so far.

Parents of children who have autism are currently drowning in a sea of red tape and never ending obstacles to find help for their children. For some of these children, only 70 of them, they will one day, be able to walk through the doors of a state of the art autism centre and receive help costing thousands upon thousands of pounds.


What about a Centre for Spina Bifida Excellence, or Down Syndrome Excellence? The parents of children whose difficulties do not arise from autism must be getting very angry that the Special Needs budget is being funneled into a Centre just for autism, a non-existent Centre. They must be very angry that money which could have purchased their children special equipment and services is disappearing into the bank accounts of persons who have yet to treat one child.

3.5 million pounds per year has been spent on the centre, and probably a lot more. No one knows, no information has been forthcoming though some political representatives do want answers. see:(http://www.newsletter.co.uk/news/Concerns-raised-about-planned-autism.4573431.jp)

Imagine the amount of classroom assistants 3.5 million could buy. With the lousy wages assistants are currently paid, hundreds could be recruited. Imagine the intensive training programs that could be provided to parents to help them work with their child's sensory systems or teach them how to facilitate language and communication.

Two years ago, the public was consulted (and I use that term loosely) about this centre. I attended two of these consultations in the North. Headed by Mr Gary Cooper, CEO of Middletown. These were an exercise in public schmoozing. Attendees received some nice hand-outs, a steaming cup of tea, a very affable greeting and a firm handshake from the CEO. However, they left as ignorant of the facts as when they arrived.

Most parents in the North were not even made aware of the consultation. To my knowledge, it was not advertised in the mainstream media. I personally heard about it via word of mouth.

I still have my Middletown hand-out from those meetings. It said very little. Those persons chairing the meetings appeared to have had pathological avoidance disorder as no questions were answered. When questions were asked, an instruction was given to "write them down on your form so we can submit it to the consultative process.” The attendees thought they were attending a consultative process.

What is this centre? What does it claim it will do? After one weeds through the saccharin laced adjectives that have been used to describe the centre, it appears to be a hothousing project or “boot-camp” for children with “challenging” behaviours, children whose needs cannot be met by their teachers.

No one really knows, what the centre is going to do because the goal posts have changed repeatedly during the past six years. Even the autism charity AutismNI doesnt know its own mind regarding the Centre. At the start AutismNI was very vocal about its support for Middletown, then its support waned, now it is difficult to know what they think, they are quiet.

Most of all, parents have not been advised of how this centre will work, what treatment their children will receive, or even what the sleeping arrangements will be. The Centre is nowhere without children and the parents of those very important children have not been consulted.


140 children, 70 each from North and South will attend per year. It is not clear how selection of such children will be made, but it appears they will be selected from mainstream schools. If that is the case, the centre will not be seeing many children with autism. They will see children who have Aspergers Syndrome, or PDD-NOS though. Children with autism are usually fast-tracked into special schools in Northern Ireland, segregated away from the “normal” kids. In effect the Centre may never see a child with autism.

How children will be referred to the Centre is also unknown. Only 70 children per year will be admitted from the North and it will be very interesting to see if parents who know how to work the system will have an advantage over parents who do not.

For those lucky (or unlucky) 140 children who will use the Centre, a siege will be laid upon them to make them more manageable for their teachers. Educational psychologists, speech therapists, behavioural interventionists and more will work with the child hopefully sending him/her back to school/home with a healthy respect for compliance. Home educating parents should note that their children will not be considered for treatment. This is purely for the benefit of teachers who can't cope.

The idea of sending children, particularly young children away from their parents for up to five weeks is quite unbelievable and a potential nightmare for the child..

The Commissioner for Children has been very quiet regarding this Centre despite the equity issues. Child protection issues abound as well. Parents have not been advised what this Centre will look like but surely the Commissioner knows. If she doesnt the Inter-Board Autistic Spectrum Disorder Group should be able to tell her. (Has this group consulted with parents I wonder?)

Reference to this group can be found here: (www.theyworkforyou.com/ni/?id=2008-11-24.7.27)after Carmel Hanna MLA questioned the Education Minister on 24 November 2008 regarding how her department and others co-operate regarding pupils with autism:-

"The inter-board autistic spectrum disorder group, which was established in 2002 to advise the regional strategy group on special education needs and the Department of Education on issues relating to ASD, liaises regularly with representatives from the trusts. At those meetings, discussions are held on a range of topics relating to autism: the diagnostic assessment of children and young people; parent training; support for community services; joint training arrangements; and joint strategic planning.

The inter-board autism spectrum disorder group has developed an ASD strategy. We have also produced classroom resources to support positive interventions for children with ASD, and we are doing that on a North/South basis. There is, therefore, good sharing of practice and resources. The Department of Education, in partnership with the Department of Education and Science in Dublin, also advanced the arrangements that were necessary to enable the Middletown Centre for Autism to begin offering services in December 2007. That marked an important development in the delivery of educational assessment for children with significant levels of autism."


Selection of children to attend such a centre cannot be equitable, and cannot be ethical. The Centre touts itself as a Centre of Excellence. With the thousands of young people in Northern Ireland today who have autistic spectrum disorders, how is it equitable to provide “excellence” to some, and not to others? If the Centre is a Centre of Excellence what are the rest of the North's children getting - mediocre? It is completely unethical to provide gold standard service to some and not to others. It is unethical to spend a considerable amount of the province’s special needs budget on 70 children and not on the rest.

In terms of financial equity, the Southern government is getting a raw deal. The population is considerably greater in the South yet admissions from the South will be the same as from the North – 70 per year. The costs of the Centre are going to be split 50/50 North and South. This does not make sense.

Plenty of government representatives have raised serious questions about this centre. Last Monday on 23 March, a question was posed in Stormont, as to how much the centre has cost so far. I very much look forward to the answer that will be provided to that question.

The answers will undoubtedly lead to even more questions.

Frustrated Friday

It's Frustrated Friday and yes, I have an infatuation with alliteration. Thank you for noticing! With any luck and a little prayer, "Frustrated Friday" will not be a recurring feature on this blog.

This morning, we did our usual Friday morning thing of going to a playgroup at a local church. Reiss had a pretty good day yesterday. Today, not so much. Yesterday, not a single timeout or "break," as he prefers to call them. Today, he was in a break nearly every seven seconds.

Today's "fun" for him was taking toys from other children, pushing children much smaller than he is, and taking all the little girls' pretty girls from their hair. When Milla started wearing decorative hair bands and tiny bows in her hair a few months ago, we started calling her a "pretty girl." Reiss clued in immediately on the correlation between Milla wearing bows in her hair and my husband and I calling her Pretty Girl. In his world, we were referring to the actual bows as "pretty girls" and so the name stuck. Now, whenever we have bows in Milla's hair and Reiss takes on the look that he can't resist pulling them out, we have to remind him not to pull out her pretty girls.

Oh, how I wish we could find an effective means of discipline for Reiss. I don't want to confuse him any more than his puzzling world may already be but timeouts do not work for him which, by the way, is echoed so incredibly often when I talk to other parents of autistic children. Having said that, timeouts are the disciplinary method used at the developmental preschool Reiss attends, as well as the Parent's Day Out (PDO) program he attends one day per week.

If I switch things up a bit at home with discipline and deviate even a tiny bit, my fear is that he will suffer regressions from the inconsistencies between home, school, and PDO. And that is indeed what it seems like happens when we have tried other disciplinary methods such as taking things away, having him sit in his room, or talking through things. One of the major issues with Reiss - with many autistic children - is that he does not place a value on very many things, so taking an item away usually makes no difference to him.

As for why it's Frustrated Friday, I'm not sure which pains me more: Feeling like we have tried everything and not being able to figure out an effective disciplinary method for Reiss OR when others who do not have autistic children make me feel like the worst parent in the world because of how frustrated I get sometimes. I am aware that Eleanor Roosevelt said something along the lines of, "No one can make you feel inferior without your permission." or something like that and to that, I would have to say that Eleanor obviously didn't have any autistic children.

The things people say to me sometimes make me so angry because they have absolutely no idea what I go through in an average day. This is not meant to make people feel sorry for me or pity our situation of living life with an autistic child, but I do wish people would think more and talk less. Until a person has had to deal with the on-going stress of having an autistic child or any otherwise similar high level of stress in rearing a special needs child, my gut tells me to smack the person silly who is passing judgement on me. Being the ever-so-nice person I am though, my head and my heart tell me to take their comment with a grain of salt and take a mental note to say a prayer for their ignorance later.

Thursday, March 26, 2009

Thankful for Three Things Thursday

Can you believe it? I'm actually on here on Thursday doing the "Thankful for Three Things Thursday" post and this makes two weeks in a row that I wasn't late. Yippee, me! Having said that, let me get started before someone wakes up or starts crying or whatever other interruption may occur.

Today and this week I am thankful....

1) Because I am wise enough and mature enough to be able to admit that I am clueless in a lot of areas. I really don't wish to go into detail here but suffice it to say that I am glad I am aware of my own ignorance....unlike some people.

2) For all the wonderful fresh veggies, fruits, and excellent cuts of meat I have been fortunate enough to come across and purchase for my family in recent weeks. As I write, my nosebuds (is there such a thing? I'm talking about the little sniffer things in my nose) are being tortured beyond reason with the tempting aroma of spaghetti sauce in the crockpot. I'm not certain "spaghetti sauce" is the correct name for this concoction but we will be eating it over the guts of two rather large spaghetti squashes, as if it were spaghetti sauce.

At around ten this morning, I fired up (okay, all I actually did was plug it in!) the crockpot and into it I dumped a large can of Dei Fratelli Italian Sauce, a 14-ounce can of petite diced tomatoes, an onion, a zucchini, some celery with leaves, a bit of cooked ground beef, FOUR cloves of garlic - oh yeah! - and the seasonings from THIS recipe, minus the garlic. It's killing me in here with this smell. Come on, dinner! Bring it, baby! Between all the veggies in the sauce, the spaghetti squash it will cover, and the salad we will eat with all of it, V-8 ain't got nothin' on us!

3) That my husband has a good job in a nearly guaranteed economy-proof field. I have been thankful for this before but in this economy, I think it's worth mentioning again. My husband designs customized software and builds computers from the ground up for doctors and hospitals. As long as there are doctors using computers, we are nearly 100% guaranteed no "job loss" issues.

There seem to be so many people struggling in this economy, I would love to hear what everyone is thankful for...Consider this an invitation to come out of the lurkers' closet and comment or feel free to email me from the address on my profile page.

Wednesday, March 25, 2009

Toddlers, Taxis, and Tables...Oh My!

Oh, the places we will go....the messes we will make! Notice how Milla is leaving the scene of the crime?

Modern-day Bonnie & Clyde: Guilty, as charged for "allegedly" turning the playroom into an official federal disaster zone.

Reiss might put "Mommy's Taxi Service" out of commission. Oh darn!

Our new kitchen table that I promised to post photos of days ago. There are actually two other chairs but Reiss likes to slide them around on the new floors.

My new best friend! It's a battery-operated Shark. LOVE this thing for crumbs and dirt specks. It's so much easier to whip this out rather than dragging out the electric "Flip-It" wet/dry monstrosity of a thing or trying to get everything with a regular old-fashioned broom and dustpan. I use my Shark two or three times per day. Granted, I still have to do a damp cleaning now and then but the Shark is great after mealtimes, snacktimes, and toy clean-up.
By the way, remember last week's "mess?" If not, you can view it and read about it HERE. We have had two more of those "messes" just this week - not as bad as last week's mess, but "messes" nonetheless. And they always come at the least ideal times too...

Sunday, March 22, 2009

Look Out, Bouncertown! Here Comes Reiss!!!

Reiss received his first invitation to a birthday party that was held last weekend at a local indoor bouncer facility. I nearly cried! Autistic parents, you know where I'm coming from here! T0 those who do not have children with autism, imagine having the fear that your child will never have any friends and that is what parents of children with autism go through every single day. Reiss and Milla on the bouncer meant for children 48 inches and under.
Milla lying down on one of the big kid bouncers. Looks like she's trying out the latest gang signs. I love this little Gymboree outfit. The top is actually a dress but I've never been terribly keen on wrestling with tights on her at such a young age. We have a few pairs in size 2T so maybe next winter I'll get brave.
Reiss climbing up the rungs on the big kid bouncer. This was a BIG deal. All other times we have taken him to this place, we have endured a meltdown about getting on the bigger bouncers and also abiding the "no shoes" rule. His shoes are one of his obsessions...Although he's getting more open-minded to the idea of being barefoot, he still wears them to bed sometimes.
What a BIG boy! I can't believe he will be four already in around three months from now.

Success!!! This was the smallest big kid bouncer. He did go down the biggest one but he preferred this one.

The "After"math of Our Remodel

Just a quick post to show some "After" photos of our recent remodel....You can check out the "Before" photos HERE. All photos were taken at night and do not do justice at all to how much our world has brightened and lightened up just by this small remodel. As you can see, this was before we moved everthing back in the rooms. The extra paint cans hadn't even been taken out to the garage yet when the photos were taken. The above photo was taken in the kitchen looking out to the entryway, living room (that we use like a family room) and dining room (that we use as a playroom).
The playroom - taken from the living room.

From the living room, looking toward the entryway - on the right - and the playroom - on the left - into the kitchen. The doorway on the left, going into the kitchen was where one entire wall that was on a diagonal and part of another wall were removed. That alone opened up the rooms so much and brought us from 1974 into the new (almost-decade-old) millenium.

The entryway with our new chandelier. I LOVE, love, love this chandelier! It has nine lights on it - quite a change from the useless 3-bulb brass and smoky glass piece of C-R-A-P that was in there previously.

Friday, March 20, 2009

I've Got Some Explainin' To Do....

The floor where "It" happened. This was actually after I had tried to wipe some of "It" off.
Believe me when I say the photos don't even come close to doing justice to the enormity of this mess.

Yesterday's post was a bit hurried and probably prompted some confused looks from anyone reading so I will take a moment to explain the reasons behind the three things I was thankful for on Thursday.

First, as you know, I woke up with unbelievable pain in my neck yesterday. It was one of those things where any task of any kind - big or small - felt like it required a monumental effort on my part. At one point, I sat on the couch for about an hour and decided I was not getting up unless I heard screaming. For most people, this wouldn't seem like a big thing. If you're reading this, you may even be thinking, "Good for you. You got a break." Breaks are practically non-existent for many parents of autistic children. For those who have a child with autism, you know what I'm talking about - this is BIG.

So I had taken a break, it was getting close to naptime and things had been especially hectic with my neck pain and with Reiss and Milla demanding something every four seconds, so I hadn't really eaten a lunch. I didn't get to eat when they were eating lunch because they were dorking around and misbehaving so much that I literally forgot to feed myself. Now normally, this would be hard to do since we eat the same things. We would all sit down, have the same thing to eat, and then eat. Throw a new dietary need - mine - into the mix and it ends up I'm eating differently than they are now. I'm trying to lose weight so I could not eat the baked potatoes and fried chicken they were eating yesterday. Well, the fried chicken, maybe - since the breading was very light. But since I'm eating only low carbs/good carbs in order to lose weight, potatoes are definitely out.
For lunch, I needed something quick. I grabbed a can of organic refried black beans - for fiber - and heated up half the can. After throwing a bit of salsa on top, I was ready to go. So I was walking into the living room (yes, I said it, eating in the living room!) to eat my bowl of beans and I saw something on Reiss' shoes. I scooped a bit of it up with my finger and asked Reiss, "What is this?" as I brought it up to my nose. Before he could answer, I said "Oh my GOSH! You have GOT to be kidding me!"

And Reiss said, "Is it poop?" Because that's his way of saying "It's poop." And yes, it was poop. And it was on his shoes, socks, pants, shirt, the floor, the (brand-new-less-than-a-week-old) bean bag chair he had been sitting in....basically, everywhere. And he never said a word about having poop in his pants. Seriously...and people wonder why I'm having such a hard time potty-training him. Go figure.

I'm not going to lie and say I was laughing when all this happened because that would be far from the truth, but the irony of it all did cross my mind even while it was going on. I can laugh at it now that it's yesterday's events. It would take a rock of a person not to correlate the ironic relationship between the fact that I was getting ready to sit down to eat a bowl of what looked like a cow patty and my already bad day making an even worse turn with a half-hour's worth of poopy mess to clean up off my child and numerous surfaces of our home.

And in case you're wondering....Yes, after all that, I still ate the beans. I was starving.
Number two on my "Thankful for Three Things Thursday" is pretty self-explanatory. I booted the old table in our kitchen and we purchased a new one. There really was nothing wrong with the old table - it was hand-crafted and excellent quality. It was simply too big for our kitchen. Our new table is a 48"-round and perfect for us and the size of our kitchen. I would post a photo but haven't taken one yet. I will be certain the table is in one of the photos when I post the "After" pictures of our recent remodel.
And number three...why am I thankful for fiber you ask? Well, for two reasons, actually. First, I had to do something to turn all my lemons yesterday into lemonade and one of the things I did was be thankful that Reiss is obviously getting enough fiber to keep him regular. Many autistic children experience either one of two extremes when it comes to bowel movements. They either have diarrhea on a consistent basis or are constipated quite often. Reiss is neither and is pretty regular and I credit that fact to us eating a GFCF diet and making certain he eats plenty of fiberous foods.
My other reason for being thankful for fiber is that it helps when one is trying to lose weight, as I am doing right now. Two high fiber snacks I have taken up eating are flax crackers (8 fiber grams per 5 cracker serving) and cacao nibs (9 fiber grams per one-ounce serving). I'm still mastering the art of finding palatable ways to eat cacao nibs, as they can be somewhat bitter-tasting.
So there you have it...yes, they are indeed strange things to be thankful for but it's not been the greatest week and I have to find the positives wherever I can. Today I am thankful that it's Friday!!!

Autism Wars in Nothern Ireland

In Northern Ireland autism is a war. It's a war of attrition, the unrelenting wearing away by the powers that be, of your trust, confidence, and energy. Sometimes even hope, the eternal reserve of the forsaken, is lost too. This war is not about those who have the condition. Like all wars, its about money. It might look like its about making things better, but really its just about the money.

Not everyone in Northern Ireland knows this but there are still children and adults with autism, living in Muckamore Mental Hospital, some of whom have been there a very long time and who are now institutionalised. Who knows if their lives could have been different if it wasn't for this war. Is it inevitable that they had to end up there? Was this their destiny from birth? Mental health problems associated with having autism are common and totally misunderstood and tragically mishandled. In the link below is a culmination of the thoughts of some of the parents of these individuals. In reading it, the fear they have of their loved ones being as they put it "re-settled" is palpable. Imagine having to fight to keep your child institutionalised. I am not making a value judgement here, their situation is what it is and they no doubt made the best decisions they could as parents and with what they were offered in terms of help. But as I look on the face of my young child I cannot accept or comprehend such a fate. Who knows what his future holds, but I would not want this for him and I am quite sure, nor would he. see:
http://www.dhsspsni.gov.uk/meeting-with-society-of-parents-and-friends-of-muckamore-abbey-abbey.pdf.

I believe (from my own personal experience) that there are many individuals in Northern Ireland today, some who even work with our children, who believe that institutionalisation is the "best" place for them. When my son was the tender of age of 3 years old, a clinician working working with him suggested that due to his hyperactivity and unmanageability that I should start thinking of residential school. Also suggested was the usual cocktail of drugs to calm him. (translate immobilise) Drugs and institutionalisation - what a future, what a war is being laid against our precious children. Not to mention the many parents in Northern Ireland who have had social service involvement for not complying with these kinds of suggestions from "professionals" . (Drug them or we take them away)

Part of my personal "war" is to prevent my child being institutionalised and to keep him safe from people who think that is my child's fate. Any other parent would want the same. Belief systems are harming my child and many other children, adults and families.

Civilians, parents like me, unwillingly become conscripted combatants in these autism wars. We are forced to sign up for a tour of duty in a "do or die" fight for services, recognition and respect for our children. We pit our best attacks against the enemy but it's like we are on foreign soil. Our artillery gets lost on the roads and our troops are picked off by snipers who have bigger and better guns with high powered laser scopes. For some, the lucky ones, the tour ends after a few years or maybe a decade. For the rest of us, we are lifetime recruits with no pension and post traumatic syndromes.

How could I have been so naive to have once believed my son would receive the help he needs? Or that anyone would care enough to help me find it? How could I have thought that the help he needed even existed in Northern Ireland. So far, I have paid for most of it, out of my own pocket. That's not the part that bothers me. What irks me is that Northern Ireland has the audacity and arrogance to suggest they are going to deliver excellence regarding autism (ref: Middletown Centre for Autism Excellence). Mind you, the "excellence" part was dropped from its title recently. How can Northern Ireland deliver excellence when "pathetic" is too good an adjective for their current provision?

Belief systems, money and the arrogance that only comes with ignorance is what this war is about, and not much else. Northern Ireland does not believe in or value children with autism. It knows that autism is not going away and the system is in almost complete meltdown. The arrogance pops up everytime someone from the government or other sector covers up their ignorance of autism by appearing to know what they are talking about when in fact they should confess to knowing very little and at least be honest about the current state of affairs.

If these people knew what they were doing in Northern Ireland, if they were using and promoting best practice we wouldnt have this mess. As it stands children face a post code lottery to get a statement or classroom assistant. SLT and OT are very thin on the ground. Training for teachers and training for parents/carers is even less.

There are also serious issues facing adults who have an ASD in Northern Ireland as well as their families/carers. Most adults who have autism have very little hope of obtaining work or of living independently. Many of these adults have unaddressed co-morbid conditions that have wreaked havoc in their lives. Mental health difficulties arise very often due to decades of not addressing the needs of individuals with autism. Commitment to persons with an ASD is not present in Northern Ireland.

There are over 350 interventions that are currently being used to "address" autism worldwide, probably more. Whether you want these interventions or not, Northern Ireland generally only uses one of them. It's called the TEACCH program (Training and Education of Autistic and related Communication Handicapped Children ) "Oh, pardon me, did you just say handicapped?" Yes, I did. The UK version is called "Autism Independent" (a misnomer) and used to be called the Society for the Autistically Handicapped. "Excuse me again, but did you say "handicapped"? Yes, I did. I presume that the Society for the Autistically Handicapped must have undergone some very radical changes to have it's name changed to Autism Independent! (http://www.autismuk.com/) - but it didn't. It still peddles the same old crap called TEACCH.


Who decided that all children in Northern Ireland could only be taught via the TEACCH method? Was a deal done between North Carolina (its birthplace) and here? I won't go into TEACCH much here, because I have plans to tell you all about it at a later date but TEACCH is based on a premise that autism is a "culture" and that persons with an ASD thrive on routine. the most damning part about TEACCH is their belief system about our kids. It uses a lot of pictures and schedules but the two most important things a person with autism might want to learn is not part of the program - social communication and flexibility. Deliberately embedding routine in persons with autism is like giving cocaine to an addict - it's the last thing you want to do and in my opinion, it's criminal.

Our children are the "handicapped" of the 21st century. The hierarchy of disability is alive and well in Northern Ireland, with our children being at the very bottom. With all the political correctness in the world, it hasn't changed the value judgements persons make regarding autism and other developmental disabilities. These value judgements continue to relegate our children to segregated and inappropriate special schools, or to mental institutions away from the rest of society. Entire families are affected by other people's beliefs and if you talk to 3 families who care for a loved one with autism, at least 2 of them have been, or are in distress of some description.

If you want something different for your child or you want something more, this is where you will be embroiled in a number of aspects of this war, namely money and beliefs. With one mindset about our children, I suspect the school boards and health trusts ask themselves why they should spend money on children who are not going to amount to much.

If you want ABA or RDI or even a mainstream education for your child, you may well have to go through Tribunal to get it. The legal department and special education at your local board are two separate entities and its of little consequence to your local special advisory assistant whether you lodge a tribunal or not, because the legal costs aren't going to come out of his budget, so fire away at this war all you want but remember, your kid has an IQ of 70, never forget that! Never forget that a place at a special school is waiting for him, his chair is nice and warm and the staff have all the training they need in 'handling' (physically restraining) your child. Remember, when your child turns 18, s/he returns back to you to probably live with you for the rest of his/her life. If you are a parent, think very carefully how special schools peddling the teacch method are preparing your child for life. If you have already 'bought' the candy coated stories from the head teachers of these schools about how wonderful their programs are, well it might be too late for you. But for parents with very young children, please think long and hard, and try to visualise your 6 foot 14 stone son who will be occupying the 'granny flat'. It doesn't have to be this way. Others make these decisions for you and will continue to do so, as long as you remain quiet.

If you want a special school place for your child, that is well and good, but your child deserves a choice. In England there are autism specific schools, schools that work with autistic children only, schools run by the NAS, independent schools and private schools. We don't have that choice here. So if your child is in a special school ask yourself, if there was a better choice, would he be there?

If you feel yourself getting angry at that question I posed, ask yourself if you are justifying your child's placement at a Northern Ireland special school because of his need, or because you had no other option? Personally, I would have loved an autism specific school for my boy, one where they understood his personal complex sensory system and how it affects his learning. A school of total acceptance, a school just for him, where he is valued. One can dream. I am entitled, however to ask for it and fight for it. Just because every other kid goes to a special school doesn't mean mine is going there, or should go there.

We are very parochial here in Northern Ireland and nothing is frowned upon more than rocking the boat or being the odd one out. Conformity, where autism is concerned will never do our children justice. If you want it, you have to ask for it. I know there are parents who are very unhappy with their children's educational provision and who are demanding educational options for their children. I know you are out there, I have heard you, as parents, talking amongst yourselves. It's the education boards and government that needs to hear you though.

Back to beliefs again. Your child, if he has autism, will probably be tested as having an IQ of 70, a borderline "learning disability". There is nothing that says autism is a learning disability, in fact autism is diagnosed based on behavioural criteria. However, the reluctance to spend money on providing individualised learning programs to children with an ASD is easily covered up by labelling most of them with borderline learning problems.

The belief here is that children with autism can't learn, or don't learn well or learn so differently that it's not worth spending the money on them. I know many children and adults with IQ's that exceed my own (though not hard to do) but that are in the genius range despite being tested as very low as children. This is not to say that learning disabilities don't occur in the autistic population. However, a child who is so caught up with his sensory feedback needs or is possibly in physical pain, who only has a half hour window per day to learn is not going to be gaining knowledge at the level of his peers. Does he have a learning disability or has he got a hot wired brain?

It's often only a "belief" that there is a learning disability associated with our kids. It becomes a reality when an educational psychologist presents a test to our children totally inappropriate for their language or attention ability. (there is no "normed" autistic population and these tests can never be normed either) - they border on the unethical, particularly when they are given to young children with little or no language and no knowledge of social communication. Further, they have no bearing on what the child will be taught or how - they are administered simply to weed out those who need special assistance (costs money) and those who don't.

As parents we know how bright our children are - in fact in many ways, brighter than their peers considering the amount of chemicals firing through their brain every day. I know how to reach my child when I am teaching him something new. However, to deliver the kind of teaching I do, into a schoolroom would cost a lot and take too much of the teacher's time, so instead children like my son might get a nice new label of learning disabled, one that will likely follow them throughout their entire lives.

The final assault in this triad of curtailment is arrogance - the kind of arrogance parents experience from paediatricians, teachers, speech therapists, occupational therapists, and anyone else really, who does not know what they are talking about but try to fluff it up with a bit of jargon like "Kanner's autism" or "asBergers syndrome". I could forgive a naive teacher. I could even forgive a not so naive teacher, because teacher's are getting it in the neck, with no support and limited training.

What I can't forgive, is those who are charged with helping our children, and who are paid well for it, who don't know about autism. Some of these people sit on autism specific committees in both the government, and health sectors.They sputter and spit about autism. Their civil servants write their scripts for Stormont. They to and fro about autism as if they actually knew something about it. They get locked into one path with blinders on, and it quickly becomes too expensive money and time wise to veer off that path. Thus, new approaches, ideas, concepts become too difficult to implement - that all costs money. Parents are still being given ASD diagnosis for their children in paediatric clinics all over the North, and are still being told to just come back in 6 months time. What happened to early intervention? Why is it that a diagnosis of ASD, viewed by the rest of the world as a serious developmental disability is not being taken seriously by the Department of Health here? Why is early intervention only important for other countries but not here?

I do not have time to lobby government, to educate my political representatives, nor do I have time to attend groups. The autism war in Northern Ireland has forced me and most parents to rely on "leadership" to get us out of this mess. Leadership is all sewn up, in organisations like AutismNI and of course within the statutory sector. It was that leadership that caused the mess in the first place because it wasnt made up of parents. We currently do not have any leadership in Northern Ireland regarding autism. If I believed that there were 30 other parents out there who were willing to stand up publicly and take on organisations like AutismNI and the NAS and the government, I might get involved. But it looks like most parents who want their voice heard are very isolated. One sees the odd article in the paper from a pissed off parent, (see link to the right entitled, "is anyone going to help my son") but generally the voices of parents have been absorbed into sound proof rooms somewhere else.

This autism war has been very expensive and has achieved nothing for our children. The money has not been spent on rations or on artillery. Its been used to buy time, time that continues to be stolen from our children and can never be bought back.

Thursday, March 19, 2009

Thankful for Three Things Thursday

This morning I woke up with incredible pain in my neck. Fifteen hours later, it's still as intense as it was this morning and at times is so excruciating, I am close vomiting. With that, this will be short but I wanted to make sure I did my "Thankful for Three Things Thursday" post on Thursday.

I am thankful for....

1. Irony - It keeps us laughing.

2. Our new kitchen table.

3. Fiber

If #1 and #3 sound like really strange things to be thankful for, I promise I will explain...hopefully, tomorrow. If you are reading this, please pray that I wake up pain-free tomorrow morning. Another day like today does not sound a bit appealing and weekends being sick or in pain disappoint me.

Tuesday, March 17, 2009

Happy St. Patrick's Day!!!

Happy St. Patrick's Day!!!
No "Three Thrifty Tips Tuesday" today. In the spirit of St. Patrick's Day, we have been eating and being "green" all day!Reiss in his green gingham shirt with Daddy before going to "work." Because Daddy goes to work, Reiss likes to call preschool "work." We tell him it's his job to go to work and be nice to others and learn.
It's tough providing snacks that are green in color AND gluten-free, casein-free, contain no articial dyes and well, basically, meet all my "rules" for being allowable fare. We managed though...Reiss took green peppers cut into strips, grapes, a few green veggie chips, and some Veggie Pirate's Booty. I'm addicted to the Booty! ;) Seriously, if you have never had it, it's like that puffed corn stuff you can buy that looks like popcorn - only Pirate's Booty is also gluten-free. And casein-free if you get the Veggie flavor.

Monday, March 16, 2009

Milla Monkey VS. The Mud Puddle


Forget the suspense - I'll let you know up front who won...It was not Milla. After the mud puddle, I gave her a bottle of water. She started to drink it but then I guess it occurred to her that perhaps she should wash off.

No one is really sure whether she thought she was supposed to be in a mud wrestling fight or a wet t-shirt contest.


Who knew road rage could start at such a young age?

Sunday, March 15, 2009

The Voice of Autism in Northern Ireland

AutismNI, what is it, what does it do?? I have asked myself this for the past decade since my child was diagnosed with autism. Lets face it they aren't exactly the most well known autism charity in the world, in fact many parents in Northern Ireland have never heard of them. Yet, one would be amiss not mentioning them.

AutismNI have a lot of staff and they seem to have lots of money. At first glance, it would appear they are doing something useful. No charity could be in existence for 20 years with that kind of money (I think they have 24 staff now, maybe more) and not be doing good work. No charity could have the same CEO for so long together with other long standing members and not be top of their field in knowledge about the condition right?

There are other charities I have worked with in Northern Ireland, namely the NAS (National Autism Society) and the Aspergers Network. I have had tangible help from both of them, particularly the Aspergers Network (despite the fact my child does not have a diagnosis of Aspergers) AutismNI, however has never been of any help to me - maybe it is the relentless fundraising they do, (there are at least 15 links on their site to donate/bequeath/fundraise or purchase something), or maybe its the fact that no information on their website was of any use to me. The acronym IEP does not appear to exist on the website, nor does the word tribunal or judicial review. Voluminous research and studies are published every day regarding autism, so much that it would be difficult to read it all, but AutismNI doesn't seem to know about it, or want others to know.

Neither the NAS (the UK wide Autism Charity) or the Aspergers Network are mentioned on the site. Yet, 'Irish Autism Action', and the 'Scottish Autism Society' are. Why would I contact these organisations when representatives of the biggest Autism Charity (NAS) in the UK are local?

Apparently AutismNI has 18 support groups across Northern Ireland. I am sure that two of these groups (because I checked) and possibly more are not real groups, and that in fact they are defunct. I don't know what constitutes a group in the eyes of AutismNI, maybe a phone line in someone's home is a group. Its hard to know because AutismNI uses a central phone number connecting to their Knockbracken Healthcare Park office, making it difficult to actually speak to anyone outside of headquarters. One would think they don't want parents to connect with each other except through the vehicle of AutismNI.

At the helm of AutismNI is their committee, the same committee who made the decision to accept an award (after submitting a well thought out application) of 25,000 pounds from pharmaceutical company Glaxo Smithkline last year. Now, many parents do see a connection between large pharmaceutical companies and the rise in autism, so maybe AutismNI was happy to receive an award from a company that might help keep bums on seats in AutismNI. Who knows what the reasons were but from the viewpoint of this parent, this was very bad form altogether. I am surprised that parents who are members of AutismNI have not howled about this, particularly parents who suspect, instinctually believe or who know that vaccinations caused their children to develop autism.

You can see from this link (http://www.corpwatch.org/article.php?id=15208) what Glaxo Smithkline have been accused of lately and its not good.

Why would an autism charity of all things, accept funds from a pharmaceutical company that produces vaccinations? If this produced even the slightest chance of alienating potential members or besmirching reputation, why do it?

AutismNI regularly posts employment opportunities, many funded by health trusts. Some of these positions seem to be four or even five jobs rolled into one. This, coupled with the fact that the remuneration on offer has been notoriously low (especially for positions suiting parents who want to work part-time) and this has never enticed me to apply. What put me off even more was the blurb at the end of one of these recent job descriptions entitled pressures inherent in job. Under this heading one of the inherent pressures was listed as "dealing with the raised expectations of families".

Considering I have raised expectations for my cat, much less my child, I am confused what this means. I did not know that the "raised" expectations I have for my child was a problem that had to be "dealt" with.

In the same job description (autism resource officer NHSCT) is the following paragraph: "co-operate with all AutismNI staff in maintaining good relationships with outside agencies and the general public in order to uphold the Charity's image and win increased support for its work...ensure that your conduct within and outside AutismNI Central Office does not conflict with professional expectations of AutismNI." I have never seen anything like this in a job description before. Are cctv cameras placed in AutismNI staff homes? I detect a real fear based paranoia going on here.

I think there are a lot of issues with AutismNI. It might consider itself to be the voice of autism in Northern Ireland but has this been achieved by the silencing of the collective voices of parents and individuals who have autism? AutismNI is well funded and collects money for autism across Northern Ireland. It is well supported by MLA's and is accorded respect by other UK autism groups and charities. Where parents are shouting from the rooftops about lack of services or inadequate provision, AutismNI does not shout, either via its website or via the media. I have been to meetings in various parts of Northern Ireland, attended by parents who were at their wits end regarding services and the general terrain regarding autism in Northern Ireland. Many of these parents were very vocal. AutismNI was not.

For parents of children who have an ASD, their computers can be a lifeline, affording access to information that simply cannot be sought otherwise due to time and mobility constraints. I dont see information on how to stay sane as a carer, nor do I see any ideas on how to write OT and SLT into a child's statement. I don't see anything that would empower a parent, only links to others that might. With the amount of staff at AutismNI, one would think their website would offer parents more to work with, more useable information. It wants to be a one-stop shop, but for many parents, I can't see them being anything but the last stop.

I saw a lot about an Autism Act though. There is a facility on their site to sign your name as part of an e-petition yet it has less than 600 signatures. Less time on an Autism Act and more time on real bread and butter issues like taking service providers to task would be much more helpful. Lobbying for an Autism Act is a safe option, an easy option and considering it hasn't happened and won't happen in the immediate future, who cares? How much has the lobbying for this act cost? It's wonderful having rights, but rights to what? We don't have the infrastructure yet for rights. My child currently has a statement of educational needs which is supposed to accord him rights, and even that has failed.

The hard work that really needs to be done in Northern Ireland involves a tough examination and overhaul of existing services, the training and hiring of experienced and trained individuals who are going to do the work, and a strategy to tackle the societal ignorance about autism.

Considering AutismNI is employing people with funding received from Health Trusts, the same people who are responsible for delivering many existing services, I guess that is not going to happen anytime soon. Don't 'bite the hand that feeds you' springs to mind.

I had hoped that following AutismNI's trip to Washington in 2007 together with its entourage of 12 that something useful would have come of the trip, something that could be seen at street level, by the average J. Bloggs. I havent heard much about the outcome of this trip in 2 years, though there are some pretty pictures on the website of people from AutismNI and local politicans posing in Washington. I am not aware that anyone from the National Autistic Society was invited to go, or indeed did go despite the fact they have been in existence in Northern Ireland now for the past 4 years or so. Only one of the many MLA's (John McCallister, South Down) registered their interest regarding this trip, with the Northern Ireland Assembly. We don't know if the various political parties paid their own fare to go to Washington, but if AutismNI did pay for their trips, we should have been told, particularly if public fundraising was used to pay for it. See here: (http://www.niassembly.gov.uk/members/expenses/register2.htm)

On another note, Illuminating comments from AutismNI CEO Arlene Cassidy were made here ( http://www.niassembly.gov.uk/health/2007mandate/minutes/2008/081113.htm ) when Carmel Hanna asked Arlene Cassidy why there was no support or relationship between AutismNI and the NAS. Arlene said she didn't know??? When she asked the question, Ms Hanna (MLA) apologised and said she did not "mean to be contentious". Why would a simple question, an important question like that be contentious? Perhaps she knew the answer to that question already but was afraid of stepping on AutismNI's toes. I dont understand why an MLA would preface her question with an apology. But mostly, no answer is forthcoming as to why the biggest autism charity in the UK and Northern Ireland's "own" charity dont work together.
If anyone has an answer to this, maybe they could respond. I think the answer lies in AutismNI's website pages about their 'history', where they air their dirty washing about themselves and the NAS. The web page states that a deal was brokered to keep the NAS out of Northern Ireland in the year 2000. Huh?
Getting back to the AutismNI 2007 Washington trip, this would have cost at the very least 15,000 GBP (providing they flew in the cargo hold) and that kind of money would have gone a long way to funding a few children's classroom assistants or bumping up the low wage that AutismNI pays its support staff. In fact, for anyone who has the time, perhaps you could contact the Charities Commission and ask them how to go about getting a copy of AutismNI's budget for 2007, or for 2008 for that matter. AutismNI has recently asked for almost one million pounds to fund autism staff and programs in Northern Ireland, much of that money slated for wages. Yet their wages, particularly for some support staff is near enough minimum wage.

Here is the link: (http://www.pfgbudgetni.gov.uk/autism_ni.pdf)
I think we have a right to see this information. Let me know if you find anything out, particularly if you find out who paid for the USA trip. Charities should be transparent and those who have a website and large membership should place their Annual Report online. And while you are at it, maybe you could find out if AutismNI is actually called AutismNI or if they are really called Autism Ulster and if so, where the monies raised by AutismNI actually go, i.e. AutismNI or Autism Ulster.

Its very confusing this AutismNI. First it was called Parents and Professionals Autism (PAPA) then AutismNI, but also known as Autism Ulster and finally, coupled with their linked company Autism Consultancy and Training the charity might be called PAPAAUTISMNIAUTISMULSTERACT. I can't see that Autism Ulster is going to go down too well in certain parts of Northern Ireland though.
A final word about AutismNI. In their current e-bulletin (link here: www.autismni.org/news/ebulletin%20janfeb09pdf.pdf) on page 7 is an explanation of an upcoming study they intend to carry out raising the issues of vicarious trauma (from the Troubles) and autism. Sorry, but this is the lamest attempt I think I have ever seen to link autism to something else. According to "experts" autism may be caused by:

faulty genes
men who dont like large women
watching too much television
lack of vitamin D
too much rain
single sperm donor

and now wait for it - the Troubles

This is a joke and I dare AutismNI to try and fund and roll this one out as credible. Should I start my application to the Victim's Commission anyway? How many times have you heard victim and autism in the same sentence. A google search of autism victims throws up 1,190,000 hits so maybe AutismNI is ahead of its time after all? It's bad enough that republican break away groups are fomenting violence in Northern Ireland again. Now it seems AutismNI wants to get in on the act and wrack up old wounds in the name of autism! Time for parents to wake up and stop letting groups and individuals make money and a name for themselves off the back of our children's diagnosis.

If you are unhappy about anything to do with autism in Northern Ireland, I am afraid that if you want positive change, it is you who will have to do the hard work. Relying on others has to date, achieved very little. Classroom assistants and statements of special education need have been and will continue to be cut (see Belfast Telegraph 13 March 2009) Choice on how to have your child educated is almost non-existent, with many children with ASD's being relegated to and cloistered in "special" (not so special) schools. If your child has autism and you rely on AutismNI or any other group to do anything for him, he will still have autism 20 years from now, only difference is he will have seen a lot of balloons and you will have drunk a lot of coffee.

Autism in Northern Ireland

A lot needs to be said and done about autism in Northern Ireland. The problems that individuals with autism face here can be attributed to a system that is not working, and never could work.

Northern Ireland is experiencing severe intransigence and ignorance regarding autism despite millions of pounds being thrown around and compared to the rest of the United Kingdom, it's a poor cousin.

I am a parent and a mother of a child who has autism. We live in Northern Ireland. The system has failed my child  many times. No surprises there as it fails people all over the world. What really irks me is the unwillingness of those individuals who work in that system to learn from their failure and take responsibility. There are very few, autism "experts" here who are not parents of children with autism. Yet we rarely hear from them. I am one of those experts. No one understands my boy's particular autism the way I do and no one can help him as much as me.

Constructive criticism of all issues surrounding autism in Northern Ireland is well overdue as is the need to shuffle off the incestuous relationships that have evolved between those providing services.

Friday, March 13, 2009

I'm Such A Slacker!

Another Thursday has passed without me doing my Thankful for Three Things Thursday post. Since it was also Friday when I got around to last week's "thankful" post, I might as well call it Thankful for Three Things Friday but that just doesn't have the same ring to it. So call me a slacker! But really, I'm not. Yesterday, I was able to get a ton of things done while Reiss was at preschool. Then after picking him up and as our afternoon passed, things around here just continued to get progressively more eventful.

Last night I went to a monthly women's learning and prayer group. Before leaving the kids with my husband and mother-in-law, "those" people (the contractors who did our home remodel) showed up to tie up some loose ends. The plan was for them to get here at six o'clock, do some business, and leave. These are people who did this project and have done work for us on a few other previous occasions. They have never been on time. And when I say "never" I mean that when my husband told me they were going to be here at six, I laughed.....out loud. So you can imagine my surprise when, at around ten 'til six, we were sitting down to have dinner - at our makeshift toddler table turned dinner table since I gave the much-too-large-for-our-kitchen in-law's family heirloom table the boot - and they showed up early! Holy cow! We finished dinner and I made an insincere effort to clean up the kitchen a little bit and then I left.

When I arrived home again nearly three hours later, "those" people were still here! Honest, I did not use any expletives when pulling into our neighbors' driveway to park since I could not park in my own because of all "those" people's vehicles, but I did let out something along the lines of "You have GOT to be kidding me!" It was right then that I knew that none of the things that would normally have been done while I was gone would not be done and that my husband and I would have to do them after "those" people left and after all that, I would be so beat that another Thursday would go by without me declaring my thankfulness to all the world...or at least, the few people who read this.

So see, I'm not a slacker and I really am thankful and with any luck, next week I will be able to let everyone know on Thursday about all the things for which I am thankful. Until then, here is what I have been thankful for this week:

1. Stretch denim. Since having dear little Milla, I have gained around ten pounds or so. And I stress the "or so" because I have no idea how much I've gained. The same jeans I wore as I strutted out of the hospital with my baby girl still fit me today but I know I've gained because I can just feel it. Stretch denim is a miraculous invention. My weight loss and gain can teeter around the same 8-10 pounds in a typical pair of 100% cotton jeans but in stretch denim, that loss and gain factor increases to about 15 pounds. That little three percent of stretchy stuff they weave into the cotton makes all the difference in the world. My diet plan keeps getting put on the back burner and moved to next week on the planner - every week. Hopefully, next week will actually be NEXT week.

2. Thank God for the ingenius soul who thought of facebook. Now that may sound goofy and shallow and perhaps a tad juvenile but facebook is not My...that other site. After hearing so many stories of child predators preying on children, husbands engaging in online cheating on wives, wives engaging in online cheating on husbands, kids "hooking up" online with much older kids, and other horror stories about that other site, I was quite hesitant to sign up for facebook. However, a mothers group I belong to thought it would be a good idea to have all the members join facebook as a way to stay connected and post group dates and activities. I was still hesitant but joined anyway. Because of facebook, I am able to stay connected with friends without having to worry about losing email addresses. I can post events I plan to attend and invite others to do so as well. I can post websites that interest me for my friends to check out...The list of networking capabilities is endless. In only two months of being on facebook, I have...found a distant cousin I lost contact with more than twenty years ago...reconnected with a foreign exchange student who stayed with my family when I was in high school (I'm not even saying how long ago that was!)...hashed things out with my sister with whom I have a pretty rocky relationship...and the list is endless. And the best part is, there always seem to be at least one of my friends online at the same time I am and we can have a realtime chat - even if it's at midnight and I don't want to wake the kiddos.

3. And lastly, I am thankful for "those" people finally being out of our house. Believe me, I am very grateful for the work they did but I am so glad they are gone. I am glad we can get our lives back to normal and not worry about keeping the kids contained to a very small area of our home or playing outside for hours on end. Fresh air and playing are great but it gets old real quick when you have to be outside supervising children in just-above-freezing temperatures for hours and several days in a row. I am glad I can have people over without being embarassed. Now I know that sounds vain and shallow and I hate to admit to having any vain or shallow characteristics within me, but what was definitely more embarassing than that was when someone would show up and instead of sitting down to a comfortable conversation with a friend, I was praying that the light would shine at just the right angle so that my guests wouldn't see this stain or that one on the carpet or trip head over heels on the section of carpet that was separating from the hideous pink and gray tile or putrid brown vinyl flooring because it apparently never occured to the previous owners to finish the flooring with thresholds in the doorways. It really is amazing how much the decor - or lack of taste in decor - can affect a person's mood. Our "before" pictures just bring me down so much but now I can sit in my kitchen each morning drinking my coffee and admire a home that used to depress me beyond belief. Our remodel project came out so magnificently beautiful that I can't help but sit in the living room, dining room (our playroom) or kitchen and think that just two weeks ago I was thinking we would never in a million years be able to get what we paid for this house if we were to try to sell, that is, if we could sell at all since the market is so bad. Now I sit and don't mind the thought of living and growing and raising kids right here in this house. It's absolutely gorgeous and I love living here now.

Once we get the aftermath cleaned up from "those" people, I will take some "after" photos and post them.

Wednesday, March 11, 2009

Herbivores? Cannibals? Or Both?

My SUV is one of those that has a drop-down tv screen for viewing DVD's. I've said it before, I'll say it again - we chose this vehicle because of the safety ratings it received, not because of all the little extras included in it.

Don't get me wrong, I do love the heated leather seats. They're especially handy when you live in a place where the average daily temperature is forty degrees (Fahrenheit) for around six months out of the year - and many times far below freezing. I also love the little screen on the dash between the two front seats that keeps me informed of such things as my gas mileage average, which direction I'm headed - north, east, south, or west, how many miles I have left to drive before we have to call roadside assistance for a fillup...well, you get the idea. And by the way, no, I have never had to call roadside assistance for anything yet and definitely not for a tank fillup! Give me some credit...

As is so often the case, I'm getting off-track here. We bought a used vehicle and because of that, some of the goodies it has are things we never would have paid extra for if buying a new vehicle, that is, if we were to ever buy a new vehicle, which we will probably never do again. One of those "extras" that we never would have opted for is a DVD player but since it was already in the SUV, it's kinda like an added bonus.

For around three weeks now, we have heard the same words recited to us and been serenaded to by the same DVD that has been playing over and over and over whenever we are out driving to preschool, playgroups, or whatever other destinations that come around on our weekly routine. By now, I should know every word of Veggies Tales: The Star of Christmas but I don't and that's probably because my mind tends to wonder while it plays in the background, or in the backseat as it may be. And while my mind travels, it tends to make me question a few things child-related such as.....

1. What do the characters of the Veggie Tales eat? If they eat other fruits and veggies, does that make them herbivores? Or does it make them cannibals? Or worst case scenario, are they herbivorous cannibals? I have seen a few Veggie Tales episodes where they were eating. In one, they were eating cheese stuffed crust pizza so apparently, they do eat animal products. Does that include meat as well?

2. How is it that I, one of the most clueless people I know when it comes to all things child-related, can know about washable crayons, markers, and paints yet, some teachers (not any of my son's teachers, thank goodness) don't even seem to be aware of the existence of these products? At least once per week, one friend or another will tell me about their son/daughter coming home with crayon/marker/paint on their brand-spanking-new shirt/pants/dress that did not come out in the wash even after being pre-treated with Spray~N~Wash/OxyClean/Tide to Go. We're talking about people who make their living in a profession where they are surrounded by children nearly every working day. But they don't know about washable crayons??? Seriously, I think Crayola missed the boat on this one - they have totally missed out on a marketing opportunity for an entire group of consumers.

3. If necessity is the mother of invention, does that explain how Corelle plates came into the world? Was the inventor of these wonderful unbreakables a mother who grew tired of having her everyday china shatter on the floor during each mealtime gathering?

4. Why are so many of the characters in shows geared towards children personified animals that would - in real life - prefer to eat toddlers as a snicky-snack rather than dance around and play with them? Let's see here, for example...Barney...Zak & Wheezie (Dragon Tales)...Winnie the Pooh and Tigger too!

5. What exactly was Dr. Seuss smoking? Need I say more?

Tuesday, March 10, 2009

Three Thrifty Tips Tuesday!

It seems there is a new "F" bomb being dropped all around me lately. With the state of our economy, I'm hearing it left and right, up and down, all around me. No, I'm not talking about that four letter word that we all try so hard to keep our toddlers and teens alike from hearing or saying. Nope, I'm talking about people using and saying a word that, in practice, may seem to some like an even worse word than the one our mothers told us to never use. Oh yeah, I'm talking about being "Frugal."

As a long time cheapskate, I think it's a bit ironic that it takes an economy of this magnitute of stagnation that we are currently in to spark a fire under some people to start watching their pennies. It just seems like common sense to me to be conscious and conservative when it comes to doling out the one thing that plays such a major role in determining the quality of life (or at least, the things we can afford) for each of us.

On that note, in addition to my "Thankful for Three Things Thursday" posts, starting today I will do "Three Thrifty Tips Tuesday" posts every Tuesday. All tips will be things I have been practicing for years and find quite effective for keeping our hard-earned dollars where they belong. For those who are newbies to penny-pinching, that would be an interest bearing account of some variety.

I would love to hear your tips too, as I'm sure others would as well. If you are a penny-pincher, cheapskate, tightwad, whatever you want to call yourself - new to it or an old vet - please feel free to post a comment on what works for you.

1. When shopping for clothing, become a disciplined shopper by limiting yourself to the clearance racks only. If you have a coupon, use it on clearance items for an even better bargain. For example, several times per year I receive "$10 Off $10 or more" coupons from JCPenney. I scour the clearance racks looking for the very best deals and can usually get two or three items for just pennies apiece after the coupon has been subtracted from the total. While some stores will not allow coupon use for clearance items, many still do. Not even a resale store can beat prices like that - and items from those places are almost always used and show some signs of wear.

2. Keep restaurant coupons in your vehicle! Obviously, eating at home is best and the most economical but sometimes eating on the run is unavoidable...unless you just like listening to your varied belly growls or a carload of screaming, hungry kids. Here is what we did to keep all those coupons well organized and not cluttering the car: Buy an accordian folder and mark each section with a type of food. Your labels might be "Pizza," "Chinese," "Burgers and Dogs," or whatever works for your family.

3. Bundle your errands. This is a no-brainer for those who have to travel long distances to get to the "big city." However, we should all be practicing this, especially those who - like my family - live in an area where public transportation is a joke. Although we live in a suburban area with every imaginable convenience only minutes away, our town is not a walk-to-do-your-errands kind of city. With the exception of taking Reiss to preschool, we try not to leave the house unless we have at least three stops we need to make.