Last night, we went to a birthday party for one of Nik’s old school mates, N, who just turned seven. It was a pizza, cake and ice cream kind of party; the
first party Nik has ever been to outside of school which didn’t center on a holiday or being with extended family. We didn’t know who was going to be there or what to expect; we prepared for the worst in terms of Nik’s ability to handle a potentially overwhelming situation.
Armed with a small, soothing musical toy to which Nik has lately gravitated, chewy tubes, goldfish crackers — and a ready excuse to make a hasty exit with a small boy who had not napped — we set of to explore this new horizon. While I can’t say it was a perfect evening, it wasn’t anywhere near the disaster we had prepared ourselves to face. Other than an early incident of Nik, um, “watering the floor” when we changed his pull-up, there were no tantrums, no wild racing around the room in search of things to throw, no episodes of head banging.
In fact, Nik was quite content to play with the large number of developmentally appropriate toys which belonged to N’s little sister, S. Nik spent a great deal of time playing with a shape sorter (his favorite non-musical toy, I think), some small cars, blocks, and pushing around S’s little shopping cart. Ever the inquisitive clown, Nik tried to get into the shopping cart with less than stellar results; one must give him credit for knowing when to give up the fight.
The gathering was an eclectic mix of adults and children —mostly co-workers of M’s husband, who is in the Air Force, and their children ranging in ages from 16 months to 10 years old. Things were very low key; the kids all played with whatever toys they wanted to while the adults socialized. Being the only non-military family there, we felt a tad awkward at first but Nik took care of that by grabbing the hands of whomever was closest to him to clap; like his Nanny, Nik’s never met a stranger he didn’t like. Every so often he would disappear up the stairs and one of us would have to chase him to keep him out of mischief.
Nik and N were in school together a year ago. In fact, the last time I saw N and his family we had not yet pulled Nik from school. Nik was on the verge of walking and N was in the process of getting his Dynavox. It was an exciting time for both our families.
I was eager to see N’s family again; his mother had been one of the only mothers to reach out to me when Nik started school. Her friendship made the struggles of adjusting a little bit easier. I was anxious to see N in action with his cool Dynavox —the one his mother jumped through hoops to make happen over the summer —and to hear about the progress N has made in his new placement in a smaller class —roughly a third of the size of the preschool class he had shared with Nik. I was excited about showing off all the changes and progress in Nik, too.
Nothing was as I expected; I came away feeling very sad for M and her son. It turns out that the school has not only not hired a new speech therapist to replace the one that left in the beginning of September (after taking off the entire summer, too), but they had not told any of the parents about it. Poor M was nearly in tears when I asked about N’s Dynavox and how it was going. It seems that no one is using it at school and there is no consistency from school to home so N has regressed to randomly touching buttons to hear the sounds and has not made progress toward developing any meaningful way of communicating.
Niksdad and I both started to give M some coaching about what she could or should do but I could see that she was just too overwhelmed to take it in. In addition to her sweet son, N, she has a spitfire little girl of 16 months old who runs her ragged. On top of that, she is a military wife —which is only relevant because her husband is being deployed to Iraq in less than three weeks. He will be gone for six months as he coordinates and runs transport operations for daily troop movements. To say M is anxious and hanging by a thread right now would not be an understatement.
I feel so bad for her and want to try to help in some way. All I can offer her is compassionate understanding and information. I truly think that N is somewhere on the spectrum. (As many of us often remark, “We recognize our people.”) He is sweet and docile, completely non-verbal, perseverates to the extreme over any and all wheeled transportation —to the point of nearly being hit by a car on several occasions because he was so absorbed in watching it that he walked into the street to get closer —and he has significant oral motor issues with lip closure, drooling, and tongue thrusting. His gait is incredibly uneven —it has actually been described to me as a “Frankenstein walk.” I say I think he is on the spectrum because he has not been diagnosed with anything like cerebral palsy or any genetic disorders.
Yet N has never been evaluated for autism, let alone diagnosed, by either medical or educational professionals. This is, to me, the greatest travesty. Here is a child who can program his neighbor’s television remote to translate into French but who cannot communicate in a way anyone else —including his parents —can understand. Who clearly understands what is being said to him and responds more or less appropriately, yet no one at school has ever suggested that he be evaluated for anything beyond his current classification of “developmental delay.” I suppose I shouldn’t be too surprised; if he is placed into an autism program the school loses the funding they get for warehousing him five days a week.
On some level, I think, M knows this, too. N’s IEP is coming up next month and she hasn’t the faintest clue about what is in his IEP and how to advocate for what he needs. I think she is afraid to look too closely because she doesn’t want to see what is right in front of her. M did say she really wants to get N out of his current school; since they moved he is eligible to go to a different school in another district. I urged her to lobby for the change of placement immediately.
I feel so sad for N and his family who don’t know what to do for him. And I feel such a profound sense of relief and comfort with the choices Niksdad and I have made for Nik. There but for the grace of God…
Knowledge IS power.
