And the thing of it is, I usually accept it as just life. I am not a fighter. I was not especially chosen to fight this autism fight. I accept reality. I say "of course I understand".
And the other thing of it is, I don't want Janey where she isn't wanted. She is so sensitive to tone of voice, to the mood of a room, that she often bursts into tears at tense moments occurring on such TV shows as "Daniel Tiger's Neighborhood" or "Clifford" or "Yo Gabba Gabba". These are shows aimed at toddlers and preschoolers. If Daniel's mother is annoyed at Daniel, or Clifford upsets Emily Elizabeth, or the Gabba folk have a misunderstanding, Janey will scream and cry and pound the TV. So how would she do at a program or camp or activity that just plain doesn't want her there? How would THEY deal with her toileting accidents, or arm biting, or such? Would she be yelled at, or worse?
Although I might not like it, I can understand why Janey might not be able to attend some things. In an ideal world, she should be able to go to anyplace "open to all". But she can't. But I cannot accept that after making all kinds of calls,having two kinds of insurance for her, being willing to pay, there isn't even a place that will provide her with speech therapy, or a social skills group. I can't accept that she can't attend the city's rec department summer program FOR KIDS WITH SPECIAL NEEDS. I still can manage to get upset that she had to leave the inclusion school we loved. I hate it that the only respite we are referred to, over and over and over, is a program we tried, where we personally witnessed a staff of two, one working on checking in children, supposedly supervising approximately 15 kids with severe special needs---a program held up as "the best"---one that now does officially say they can't deal with kids that need one on one attention.
I'm feeling angry today. And I will calm down. I'll go back to understanding that "everyone included" doesn't mean that. I'll go back to realizing Janey is a special case. I already do realize, very much, that we are incredibly lucky she is welcomed and loved and embraced by the public school she attends---that I can put her on the bus each morning knowing she is cared for all day, and there is a summer program for her that does the same. But in this city, this country, this place with the money to wage wars and send people into space and provide young sports players with equipment and travel, the city that gave my sons so many incredible opportunities, there is so little for those among us with the most needs.