Happy birthday to my son, Nemo! He is thirteen years old today! A teenager already!
It was nine months ago that my wife and I attended our last IEP meeting for Nemo. If you don’t know what an IEP is, you’ve clearly only just joined this blog, so I’ll try to explain briefly.
IEP stands for Individualized Education Program and is something school systems employ when dealing with mentally or physically disabled students. The idea behind these things is that the ordinary school curriculum will be modified by the IEP in ways specific to the child’s special needs, thereby ensuring that he or she gets the highest-quality education they can receive under the system. I am unaware if IEPs are used in private-school settings (I suspect they aren’t), as Nemo has been a public-school student for his entire life.
The IEP is not static. Every year the parents, the education team and a representative from the school district meet to discuss the child’s IEP. The child’s success or failure according to the standards set by the IEP are examined, and the goalposts are established for the upcoming year.
Every IEP meeting is stressful. On the one hand you have the school, which wants to provide as many services as can be accommodated in order to benefit the child. On the other hand you have the school district, which wants to minimize those services in order to save money. This problem is especially compounded when the child attends, like Nemo, a “separate, private day school,” which has an enormous cost attached to it. A year of schooling for Nemo costs upwards of $42,000.
Granted, Nemo gets a lot for that $42,000. For one, he’s attended to by an in-house psychiatrist who monitors his health and medications. For another, he’s given access to mental-health services, speech therapy and other things necessary for his education and improvement. A whole squad of people attend Nemo’s IEP meetings, in addition to his mother and me, and it’s more than a little intimidating even accounting for the fact that all of these people are on Nemo’s side.
An IEP meeting can also be disheartening. At this last IEP review, it was determined that Nemo no longer needed dedicated occupational therapy. OT involves learning and practicing the sort of things most of us take for granted, like handwriting or tying our shoes or brushing our teeth. Nemo never got a whole lot of this, but I was reluctant to let it go. I plan to ask for it back this time around.
I have said repeatedly in this space that I have issues with full-time work and things like writing. At the same time, I’ve struggled with the desire to do well in the job and succeed on all fronts. From day to day, and sometimes even from hour to hour, I’ve thought that the best thing to do is leave the position or that the best thing to do is to muddle through. Consider this another of those moments.
I gave my work four weeks’ notice so they wouldn’t be irretrievably screwed by my departure. They understand why I have to go and have been very supportive. They have also been, to a person, effusive about my successes on the job and how much they like working with me, both personally and professionally. Just yesterday I was called a “great manager” by one of my people.
On the one hand it would seem terrific to know that everyone likes you and thinks you do a good job. On the other hand, it’s a total nightmare because as much as you know that you have to go and as much as you feel it’s the appropriate thing from the standpoint of family, writing and so forth, it’s difficult to turn away from people who want and need you to stay.
So I wavered. I started trying to think of ways I could remain on the job while still covering all the bases. Maybe I could work out the writing thing. Maybe other problems could be solved. Maybe I didn’t have to go if I could find a way to plug the gaps.
The big reason I’m going is not the writing. Yes, that’s important to me, but from a practical standpoint it’s the lack of childcare that put the final nail in this particular coffin. I started thinking, therefore, about seeking out childcare alternatives. These would cost, but I make good money and can afford it… maybe.
Anyway, my wife and I started looking at our options. Daycare is out of the question because my son is too old for that. No daycare takes thirteen-year-olds, even if they’re neurotypical. Add into the equation my son’s disability and there really is nowhere that would take him. They just won’t.
Given that this is the case, we’d have to go with a one-on-one caregiver. I hate to use the word “babysitter,” as it doesn’t really cover all the things these people do, but we’re talking about a sitter who would pick up my son at the bus stop three or four times a week and then watch him for two to three hours until someone could get home and take over. This person would have to be experienced with older children and have at least some inkling of how to deal with kids with special needs. That’s even before we get to great references and all of that.
There will be cake.
Today is a Tuesday, so as usual you get a couple of reviews. But today is not an ordinary Tuesday, and that’s what I’d like to discuss with you now. Today is World Autism Awareness Day.
If you’ve read Tequila Sunset, you know about the character of Freddie Salas. Freddie is a ten-year-old boy with autism whose mother works as a police detective. Freddie is verbal, but he has impulsivity and temper issues, plus he keeps a fairly regimented pattern of behaviors that, if disrupted, causes him great distress. Those of you who’ve read my blog for any length of time know that Freddie is essentially my son. On the blog we call him Nemo, though that is not his real name.
We first learned that our son was autistic in 2003. He seemed to be developing normally in all respects save one: he was essentially nonverbal. Oh, sure, he could speak a handful of words, but he should have had a vocabulary of a few dozen words by that age. He understood them well enough, which was good, but his speech was a mess. We took him for an evaluation, thinking that he might need speech therapy. We learned far more.
It took a while for the actual diagnosis of autism to come down. He was seven before they would say without reservation that he was autistic. Even then they continued to say that he had Asperger Syndrome, which is a kind of high-functioning autism due to be folded into an overarching diagnosis called Autism Spectrum Disorder. He had been in special education from pre-K onward, receiving various therapies related to his disabilities, which grew in number the older he became. Obsessive behavior was the first after his speech issues, and thankfully he did not develop major problems with his motor skills, though his fine motor abilities were eventually, and continue to be, affected.