The Pieces of a Puzzle

Matthew’s second year in grade primary saw him capitalize on a lot of the skills he didn’t quite grasp the year before. He had a different teacher, which was good. She expected more independence from him yet she didn’t take it for granted that he “knew” everything. There were still academic issues, but he advanced and we saw great improvements. Socially, he almost seemed more comfortable with the younger children. He was more at ease and even though he was two years older than most of them, he seemed to “fit in” better. He had his first real “Grading Day” and was pleased as punch to be going into grade one.

His grade one teacher was also wonderful. She soon recognized that Matthew appeared to have issues which were more than ADHD related. Although he was still having trouble paying attention and staying on track, it was more than that. His fine/gross motor skills were lacking, he would get completely frustrated when attempting to copy things off the board, and was constantly playing with items in his desk. He was referred by her for a full scale Psycho-Educational Assessment. This would not happen for almost one year. With a lot of hard work, determination and commitment from all of us, we were able to get him through the year. He was so frustrated. He hated school. There were obvious problems there. We had to get to the bottom of it. He was 8 years old and much too young to be facing frustrations of this magnitude this early in his little life.

Early in his grade 2 year, Matthew received the recommended testing and the results were definitely conclusive with what his teacher had suspected in grade one. Matthew met the diagnostic criteria for a Nonverbal Learning Disorder and likely a reading disability. A Nonverbal Learning Disorder is a neurobiological disorder affecting right hemisphere systems, the area of the brain which processes nonverbal or performance based information. The three categories of dysfunction associated with a NLD are motoric (gross and fine motor), visual-spatial organization (a lack of image, poor visual recall, faulty spatial perceptions and difficulty with spatial relations), and social (a lack of ability to comprehend nonverbal communication, difficulties adjusting to transitions and novel situations, significant deficits in social judgment and social interaction).

Well this is great. At least now we have a name for what is causing Matthew difficulties, but how do we help him? How much support are we going to get?

Fortunately, a lot of those questions were answered in the report from the school’s psychologist. There was a list of recommendations for Matthew’s schooling with hopes that his frustration level would decrease and he would be able to start enjoying school.

Matthew’s program was immediately adapted to better suit his needs. A computer was brought into the classroom for him to help in various areas. The assistive technology support was amazing! There was appropriate software introduced which helped him with reading, math and writing. The use of the computer on a daily basis also started to strengthen his hand-eye coordination and we could see a difference with his visual spatial organization, as well.

Some other recommendations for Matthew included having his notes copied for him (including homework), allow him to dictate responses to a scribe, substitute discussions and oral presentation for some written work, provide clear step-by-step instructions, giving one instruction at a time, provide extra time to complete tasks, reduce the number of questions or problems to be completed, and oral testing. Gee, there really are a lot of “little things” that could be done to help him out during the course of the school day. And with his homework, we were advised to ask him to spell his spelling words verbally as opposed to writing them down, limiting the amount of times he spends on one subject and doing projects verbally more as a presentation. These changes were implemented immediately and by his report card at Christmas time, there was a noticeable improvement. We worked with him every night and tried to find different, fun, and unique ways to help him with his schooling. He was still getting easily frustrated, though. The school approached us about the possibility of an IPP (Individual Program Plan) for Matthew starting in his grade three year. The IPP outlines areas of strengths and weaknesses that Matthew had and the goal of the IPP is to capitalize on his strengths while working on his weaknesses. The program is designed so the student will see success and get the most out of his school experience. We sat down with his grade 2 teacher, the principal, the resource teacher, the school psychologist and our own child and adolescent psychologist that we had been seeing for about a year and a half and talked at great lengths to see what type of program could be designed to allow Matthew to “like” school and have success at the same time. The program that was implemented was amazing. He had computer time every day (structured and leisure) and was able to elaborate on some of the scholastic areas where he was shining.

Even though we were pleased with the way his grade two year had ended, we felt we didn’t quite have the full-picture yet. There were a lot of questions we were able to get answered this year, but at the same time, there were still as many unanswered questions. There were pieces of the puzzle that just weren’t fitting. I spoke with our psychologist and asked if there was any other testing available, something more extensive than the testing the school board provided. Much to my delight there was. It would cost us $600 but we could have him privately assessed through a very well known psychologist who is tops in his field in our area and whose testing results hold high impact in the medical community.

During the first week of July, 2006 we began the process which went like wildfire! The doctor met with me and my husband to get and extensive look at Matthew’s background from day one. He asked us about absolutely everything you could possibly imagine. This interview lasted well over the hour for which is was scheduled and I knew we were at the right place to find the answers we were so eagerly looking for.

The following day, Matthew went in for testing. This was 3 hours of non-stop interaction between him, the doctor and the lady administering the tests.

Matthew started off having quite a bit of fun as the tasks he was required to do were “fun” and quite stimulating. He was given breaks periodically, but they lasted no more than 10 minutes. He’d come out to the waiting area and see me, get a drink of water and go back in for another round. The second time he exited the room, his look was far less enthusiastic. It was harder, he told me, and he had to do work that he didn’t know how to do. I assured him he was doing great and that there was no right or wrong with these tests and he went back on his way. Almost an hour passed before I saw him again. He looked like a little rag-doll. The moment he saw me he started to cry. He wanted to go home. He was getting very frustrated. (We were told the evening before that this would happen. It was the structure of the testing. He would have to be pushed far beyond his level of capability in order for the results to be accurate.) Again I tried to talk with him remaining as positive as I could. He had one more session to go through and then it would all be over. With some coaxing, we were able to get him back into the testing room so they could finish up. The last thing they wanted to do was have to stop the testing to resume it at another time. The “true picture” wouldn’t be reflected. It’s just not the way the program is set up. As much as it tore the heart and soul out of me to see him so upset, I knew it was necessary if we wanted accuracy. Finally, he was done. He came out of the room looking like he had been drug through a knot-hole, but quite happy do be done. The doctor informed him that he did fantastic and that he was a real trooper. A meeting was set up for the following evening to go through the preliminary results.

After going through a lot of medical mumbo-jumbo, facts and statistics, we were finally getting to the bottom-line, end-of-the day results. Matthew has ASD (Autism Spectrum Disorder), which in itself is very complex and multi-faceted. More specifically, the area on the spectrum where Matthew fit is known as Asperger’s Syndrome.

AS is characterized by:

*Narrow interests or preoccupation with a subject to the exclusion of other activities,
*Repetitive behaviours or rituals,
*Peculiarities in speech and language,
*Extensive logical/technical patterns of thought,
*Socially and emotionally inappropriate behaviour and interpersonal interaction,
*Problems with nonverbal communication,
*Clumsy and uncoordinated motor movements

That’s it!! That’s Matthew! If I could describe him in point form, that would be it! I felt relieved, ecstatic, scared, overjoyed, nervous, sad, elated and a million other conflicting emotions all at the same time. What now? We’ve seemed to have finally “pegged” him. What can be done to help him? What can be done to help us?

There are big changes on the horizon, I can feel it.

Until next time…

About angeloftheisland

Welcome to An Angel’s Island. I’m Tracey (aka angeloftheisland). I’m also Mom to 19 year old Matthew who constantly keeps me on my toes. He’s our “special” boy who shows us daily how he deals with the world of ADHD, a Nonverbal Learning Disorder and Asperger’s Syndrome. He’s my hero. Marcus is 8 and reminds me everyday that he’s in no way going to make the school years boring for his Dad and me!! I’m also wife to Mike for 25 years now. Mike is my best friend and soul-mate and he has showed me over the years, that yes – dreams do come true. Our life may not be the most exciting but there’s always something going on. Welcome to our Happy Place, newly renamed Hilliard's Happy Hideaway. I hope you enjoy what I’ve shared about our family.
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