Susan Senator

We had our final visit from home-based services at Nat’s school, the last of a series of visits structured around the question of whether Nat could benefit from a move to the residences at his school. Home-based is a very small department at Nat’s school, and is supposed to be only as a consulting service to the family. The staff in home-based come to your house and discuss the problems you might be having in your home life, the challenges, and they help you come up with solutions, and then train you to run behavioral modification programs with your child. In this case, M was coming up with solutions as well as taking notes about the dynamics within our home around Nat.

M is one of the most competent people I’ve ever met, as well as one of the sweetest and sparkliest personalities. Nat’s school seems to attract quite a few of these enthusiastic, high-energy young teachers. My first experience with her was when I was particularly irritated over the Guardianship quagmire, and I called home-based and ranted into the phone at the first person who answered. It was M. She was wonderful with me. She made a bunch of calls there and then to get me some answers, and then kept following up with emails. She didn’t even blink from my yelling. She knew immediately that it was not personal and that I was simply a parent who was drowning in the state’s bureaucratic marsh known as Transition to Adulthood.

So you can imagine how thorough and responsive my home-based services pertaining to Nat’s aggressive and self-injurious behaviors have been. M was the creator of the ugly yellow token board, and other such magical tools for connecting with and teaching Nat. (That little yellow token board makes Nat sit up and take notice. It also makes him smile. Yesterday he earned his video, rather than just watching it. We played a question-and-answer game, and he seemed to be very curious about what I was doing, using that token board like he uses in school, and very eager to humor me.)

M came over Monday to see how I was doing. She told me that they were going to make the recommendation for Nat to move to residential education. I think she could see how this felt to me to hear this. At first I felt that same old feeling of failure, of having let Nat down. All his life we had heard of residential placement as being like the last stop, the place where you sent your kid if you couldn’t handle him anymore.

But she talked very candidly about Nat in terms of his being 18; of his many strengths, and how that kind of setting will most likely help him truly achieve his IEP goals, to generalize them into a home environment. This last goal, she pointed out gently, was not being achieved in our home. She talked of how Nat’s erratic behaviors and moods were one factor that kept us from following through with so many things. The chaotic nature of the household and the other boys’ needs were another factor. Frankly, there is just too much going on for us to be as consistent as Nat needs for his adulthood training. (And this, by the way, may add to his anxiety levels at home.) Couple all this with the fact that we have never been able to hire real behavioral experts to work with Nat in the home. The cost is exorbitant for these Board Certified Behavior Analysts (BCBAs), and our school system refused us that service, other than to offer us four hours a month of a BCBA to train me. More consulting!

The fact is, I have been trained. Again and again. It is not about my training. It is about my being human, my being Nat’s mom so comprehensively. I cannot also be his teacher. It is not about money or effort. It is more than that, and less. It is our inability to consistently provide the right environment for Nat, and so he spends so much of his time on the couch in front of the television, not functioning at the same high levels he does at school. Not learning what he needs to know, not learning what his neurotypical brothers can pick up through breathing. This is not about Nat needing “down time.” He gets plenty of that, even in school! It is about so much unproductive time, when he needs to be growing and learning. I have paid out of pocket for so many people to come here and try to help Nat expand his leisure activities or his ADLs. I can only accomplish so much that way. And I want him to get his full education so that he has the best chance at being as independent as possible as an adult. Now is the time for education. We have three more years.

This is not a criticism of Nat’s neurology. I love Nat, and the way he views the world. This is about my job as his mother, and my desire to get him his full right to the fullest life possible. His right to have as much of his brainpower switched on, so that he has a good life, one that is not too dependent on others, or the state in the long run. The experiential, consistent, kind, and connective training his school gives him is the way that this happens for him. This is our Late Intervention, our chance to get him intensive training the way the 0-three year-olds do. Which Nat, by the way, never got, because no one except me knew that he needed anything until he was already 3. And he did not even get to to the right program until he was five. So…

(Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr look out, here comes the Mad Elephant Mommy)

Where was I? Oh, right. Because of M, I learned that residential recommendations are mostly made for very promising kids, who stand to expand their capabilities with IEP work 24/7. During the week, when Nat will live at the school, he will do things like create shopping lists, plan meals, shop for groceries, put them away. He will connect all the dots that I have not been able to do for him. He will learn through experience, through consistent and kind exposure to things.

And he will come home on the weekends, and whenever we want.

Ned says, “It’s kind of like college for Nat.” It is, and it isn’t. But one thing I am feeling, because of M and because Nat’s school has been so humane, all these years: is that it is not a sad thing. It is a positive move for Nat’s training as an adult living In This World.