2011 was a good year. Connor, now ten and a half years old, is becoming quite the accomplished young gentleman. He attended fifth grade in a general ed classroom without a para or teacher’s assistant. He completed an etiquette class, joined the cross-country team and learned to swim. He began taking responsibility by completing his first job (assembling ornaments for USO fundraiser), writing and presenting to the school district CFO a right-sizing proposal, hosting two groups of state legislators, and assisting in the training of local area doctors on ADOS testing. He was honored as a Hopes and Dreams Child for our local Children’s Hospital, traveled overseas, and sang twice in front of an audience. His interests are varied and extensive — he earned all about US Presidents and their families, 70s/80s/90s rock bands, the history of British monarchs, Greek mythology and Egyptian pharaohs.
Was he perfect? Heck, no. He still needs extra help via tutoring and in-classroom prompts by his teacher. He came in next to last place in his cross-country race. His singing was way off key. He is still a picky eater, and he still seems to find his way back to our bed every night. He still cannot read for more than 10-15 minutes at a time, and he bombs all standardized tests. He has two or three friends at school, but he still prefers the company of adults. Noise and large groups still bother him, and he still cannot ride a bike, his gross motor delays make sports difficult for him, and even though he is left-handed, he still can’t decide which side he prefers for throwing and kicking.
The good news? Connor no longer has those dreadful allergies, ear, strep and sinus infections that plagued him for the first six years of his little life. He is feeling much better and he is getting physically stronger. His expressive language skills, reading comprehension, social skills, executive functioning and the desire to participate in group activities have come a looooooong way.
We did have a few setbacks this year. We experienced bullying for the first time. A student had been stealing Connor’s snack from his backpack for weeks before anyone noticed, especially since Connor still doesn’t tell us what he does at school nor talks about any of his classmates. The school was extremely responsive, and fortunately, we haven’t had any other incidences.
We also found that Connor had developed an adverse reaction to the various ADHD medications we tried, so he is flying sans-med, and that is taking his grades down from As and Bs to Bs and Cs. The intolerance to medication led us to pursue additional diagnostics which showed that Connor has a duplication in one of his gene sequences which is so rare that there is no comparable case in any genomic database, and there is no syndrome associated with it. We now need to have Connor take a nonverbal language test to see what Connor’s capabilities truly are, and an MRI to rule out any other issues.
As parents, Steve and I have also made progress. We are much more accepting of Connor’s differences. We are not the soccer/baseball family, but we do hike, travel and participate in Connor’s interests in politics and music. We are now investigating private school placement for middle school, because the public school district’s middle schools have well-over 1000 students, and Connor does better in a small group environment.
