After we received Matthew’s diagnosis of Asperger’s Syndrome I buried myself in any and all information I could get my hands on dealing with Autism Spectrum Disorder. The books I read and the online articles I found could have been written especially for Matthew. You can’t possibly imagine the absolute relief and comfort we felt learning as much as we could about this aspect of Matthew’s life. Knowledge is definitely power and we were prepared to gain as much knowledge about what made our boy tick as we could.
I wrote letters to every politician (municipal, provincial and federal) that I could find addresses for and surprisingly I was astounded by the responses. Each member who replied to me seemed to have another resource from the one before or another avenue that I could explore. I had more information and contacts than I could possibly go through. I was well on my way to expanding our support network.
Closer to home we started working with the school board to make sure there would be a Teacher’s Assistant (TA) in place for Matthew come September. This proved to be somewhat more of a challenge. Our key contact at the school board was amazing but her hand’s were somewhat tied due to what I like to call political red tape and chains of command. I found out what had to be done and I went in full steam ahead.
For the first week of school (September ’06) Matthew did not have a TA with him. He would get off the bus everyday and be physically ill coming down the road. It was too much. He was in a class this year with several high-needs children and the chaos and turmoil was quickly taking its toll. Into the second week there was still no placement for Matthew and things were going from bad to worse. He cried after school, he cried going to bed, he cried getting up in the morning. The buck stopped here. We decided to pull him out of school until the position for his TA was approved. Mike went to the principal and the staff at the school and explained what we were doing and why we were doing it. They were as frustrated as we were, but unfortunately there is only so much they can do at the school level. The school stood behind us 100% and totally understood why we had been driven to the point of keeping him home. Once the school was aware of our situation, the phone call was made to the board offices. Our contact, as well, understood why we reacted in the way we did and said the message would be passed along to the power’s-that-be. Within 20 minutes we received word that his permanent TA would be assigned within the week (with posting, interviewing, etc), but in the mean time he would have a casual TA in the classroom starting the following morning. Gee, that was difficult, wasn’t it? I was thrilled but absolutely infuriated that it had to come down to hauling my son from his right to an education before we saw results. Results that were specifically stated as essential from a psychologist. What more did they want? Sometimes “the system” makes me lose all hope. Why is it that I had to resort to such an extreme measure to make sure that my son received what he needed to get the most out of his education? I quickly learned that while the school agreed and empathised with us, they only had so much power. We, as Matthew’s parents are his biggest advocates. If we aren’t going to stand up for him and fight for what is rightfully his, no one will. He’d get lost in the system of political red tape and end up who knows where. I have made it my goal to find his rightful place in his world. I’m not exactly sure where that is yet, but there is a place for him, there is a reason for his being, and there is a lifetime of happiness and success just waiting for him. I plan to help him find it.
His TA began with him two weeks later and much to my delight, we knew her. Matthew attended preschool years before and she was one of his teachers! This would be fantastic. I knew her and was very confident that she was EXACTLY what Matthew needed to thrive. She wouldn’t put up with any of his “little tricks” nor would she allow him to coast his way through. She would treat him the way I would treat him, and I liked that.
Now of course, nothing is ever easy, as I have come to realize. We just get Mr. Man settled with his TA and it’s time for his regular scheduled visit with his pediatrician. At the end of August, as we always do, we took Matt to our family doctor for his regular “Back to School” check-up. Since he was born we knew that he had a heart murmur. Nothing to be concerned about, we just kept an eye on it. On this visit with our family doctor, he said something sounded not quite right; his heartbeat appeared “more different than normal” and he was going to schedule a cardiac ultrasound just to be on the safe-side. Not having heard anything on the date for the cardiac ultrasound, I mentioned this to the pediatrician, who is aware of Matt’s murmur and decides to take a good listen for himself. He sounded him for what seemed to be forever and the next thing I knew, he was on the phone calling for chest x-rays and a cardiac ultrasound with a conference call to the IWK Children’s Hospital in Halifax ASAP. He agreed with our family doctor that something was not quite right and wanted it looked at immediately. The ultrasound could not be performed for 2 hours, but in the meantime we went down for the chest x-ray and much to Matthew’s delight went to the hospital cafeteria for lunch. It takes so little to make him excited! Of course, he was wondering what all the commotion was about so we told him that the doctor just wanted to check and make sure that everything was okay with his heart. He wanted to know if there was something wrong with his heart. I told him his heart was just fine; he loved me just as much now as he did this morning and that’s all he had to concern himself with.
After a two-hour wait and another hour and a half of the cardiac ultrasound and consultation between the pediatric-cardiologist and our pediatrician we were told that Matthew has had a CHD (Congenital Heart Defect) all these years known as a bicuspid aortic valve. Where a normal valve has 3 “flaps” or leaflets covering the opening, he has two. In bicuspid aortic valve the valve leaflets are often thickened. This can result in obstruction of blood flow across the valve, a condition called aortic stenosis and/or valve leakage, a condition called aortic valve regurgitation. He will have to be followed regularly (meaning annually at this point) by the cardiac clinic to make sure there these two conditions are not presenting themselves. Odds are good that during the fourth
decade of his life, he will have to have the valve replaced, but that’s 30 years away so we’re not even going to concern ourselves with that at this point. Just another chapter to the book. Never a dull moment, for sure.
Back at school we find Matthew adjusting well. He has a few minor issues with his TA but they are able to sort them out. They have to find a common ground and a way of working together that will be conducive to both of them. I think that happened a long time before Matthew was ready to admit that it happened.
One of the big social stumbling blocks for someone who has Asperger’s is their inability to “get” sarcasm, puns, and many little idioms of the English language that a lot of us can take for granted. Matthew would get very upset and distraught when someone would “tease” him or try to carry-on with him. His classroom teacher and TA made it their personal mission to teach him how to deal with and appreciate sarcasm, how to know when someone was carrying-on with him and how to develop the cute personality that they (and we) knew he had.
Along with the teachers, we started working with Matthew as well. We had to basically teach him all the social rules of everything. We had one huge area covered already; his manners and his etiquette were better than that of some adults. He is the most polite, well-mannered, well-spoken little boy that I have ever seen (as I am not just saying that because he’s mine). It almost embarrasses me at times to hear people talk about him the way they do. Mike and Matt started a little game that they were only allowed to play at home. In order to show Matthew that people could tease and play without being “bad”, he was allowed to try to think of as many “funny” names for his father as he could. They had an on-going competition, which has seen such funny names as “whale-slime”, “skunk-fart”, and “turnip-breath” become absolute terms of endearment between the two of them. Good grief! BUT the good news is, he’s getting it! He has matured so much this year (if you can say calling someone “whale-slime” is maturing), people are continually amazed. Sarcasm rolls off his tongue now and he doesn’t run and cry when someone says anything to him in a joking way. I can’t imagine anything being as exasperating as teaching someone how to react in almost any social situation that you can imagine. A lot of the social instincts we have are innate, we are born with them. This is the part of the brain that is wired differently for Matthew. He has to be taught so much of what we take for granted, he has no concept of social cues and the frustration begins when we find the same concept come up but in a different situation. He is very literal and cannot think past what he can see. He does not understand how to relate the same social rules to different scenarios. So we are constantly teaching the same ideas to him over and over again. When he finally “gets it” and we know he actually understands, we could jump over the moon. Sometimes it takes endless times of repeating and coaching over and over and over before we are confident that socially, he is progressing.
Academically, Matthew had a wonderful year. His IPP was designed to give him the success he needed to begin regaining some confidence in his abilities. He surpassed many of the goals set forth and even though he struggles with his reading, the successes far outweighed the struggles. At the beginning of the year his journal entries consisted of pictures and perhaps a few words. By the time he did his last entry in June he was composing, on his own, between 8-10 sentences to go along with the picture he would draw. Again, we were over the moon. The little things with him are so big. I have explained to people that I would never expect perfection from Matthew, as I don’t believe that’s realistic. The number on the top of the test can’t always measure ability and understanding. If he worked and performed to the best of his ability, then in my opinion, success has been achieved. He was selected this year to have a journal entry published in a book for the school board and the reason he was selected was based on the level of improvement he showed over the course of the year. That meant more to us, as his parents, than if had achieved 100% on every test or assignment that he completed over the course of the year.
The summer of 2007 is shaping up to be one full of joy, fun, excitement and adventure. September will see Matthew starting grade 4 in a new school with a new Teacher’s Assistant. Am I scared and apprehensive? Of course! Am I optimistic and open-minded? Absolutely! Who knows what tomorrow has in store for any of us? I think it would be pretty boring if we did. No matter what obstacles we may or may not encounter, we will face it all together with our head’s held high. We are very fortunate to have a wonderful little boy in our lives. I wouldn’t change him for anything.
Now that you have been introduced to our children and some of our struggles and our joys, perhaps next I will focus on what brought Mike and I together. That’s a book in itself! I have enjoyed sharing my stories, but they are far from over. We’re just getting started so hang on for another great ride, coming soon.
Until next time…