Today we saw a new doctor in our never-ending quest to make Nathan's life (and our lives also) better. It was quite a good visit. We saw an education specialist who gave us some very good, very practical things to try. Then we saw the doctor who specializes in both autism and brain injury in children. She gave us excellent advice and some very helpful connections for seeking respite and a therapeutic inpatient facility in case behavior disintegrates back into the deeper realms of hell. She also changed his meds a little and told us the direction she would be heading if this plan doesn't work the way we hope. We are definitely on board with the changes she is suggesting.
I should be thrilled. Instead I feel like crying. In fact I very nearly am.
Why? (she asks rhetorically, since the answer is the purpose of this blog.)
For one it was a pretty stressful visit. Nathan did not understand that he would be seeing TWO providers. So when the man stood up to discuss our case with the doctor before she came in, Nathan was done. When he realized he was staying he became more agitated. He was also getting hungry as this was going on longer than we had planned for and had no snacks. He also hates hearing where he has difficulties and this upsets him. A lot.
I did calming exercises with him. Played music he enjoys. Paul did squeezes.
And by the time she came in he was biting himself. Hard. He bit and screamed. Then tried to bite Paul. Then bit himself more. Then tried to bite her. Then bit himself some more. Then bit Paul. Hard. And long. Long enough for Paul to calmly state "Let go. Let go.". And me to spell it out. Finally the doctor pinched his nose shut and he opened his mouth. While he screamed and bit himself he did his best to do what the doctor asked him to do by pointing and matching in an attempt to distract him. Then he calmed down and watched videos on my iPhone for the rest of the visit.
So that was stressful. And it showed the doctor some of the things she needed to see. Which was good. In a very ugly way.
But I think one of the hardest things for me is something the educational specialist said.
"We know he won't be going to college, so we have to plan for practical, community-based activities."
Well, of COURSE I know that. Didn't I just post the other day that my expectation for Nathan's adult placement will be in a supervised group home? It's not like I am putting him in advanced placement history in our homeschool.
But my mother's heart still treasures little hopes.
Expectations are one thing.
Hopes reside in another place Way back in a corner. Nurtured by stories like Carly's-learning to type and breaking through her barriers. Still needing full time supports, but attending college and speaking and advocating for people like our Nathan.
Tomorrow there will be more space between today's events and my feelings. I can attend to our plans better. I will be able to make goals to make Nathan successful in the community. And also to increase his typing communication.
Because my heart still makes plans too.