Let me give you some background first: I have two autistic spectrum kiddos; Malachi, my 3 year old son, who is considered "severely" autistic, and my daughter Tykie, 5, who has Asperger's. Tykie, I'm honestly not too worried about; she is very intelligent and is currently being called "gifted", particularly verbally (she has the vocab of a 14 year old!!!), and I believe that she will grow to be a functional, if quirky, adult. We are not pursuing any therapies for her at this time. My son is severely echolalic, and therefore we are working with a speech therapist to develop some alternate communication systems. I'm also teaching him sign language, and we have a lot of fun together scripting and echolalia-ing to each other. I am going to be homeschooling both of my kids, but they got their diagnoses from the special needs team at our local public school, as it was the only place within 7 hours of us that it could be done.
Now, I consider myself to be a proponant of the neurodiversity concept. I felt that way before I ever heard the word; during our very first visit with the SN team, I told the psychologist that I adored my children and wouldn't change them for the world. And she jumped in to correct me, saying, "well, you need
to change them - for the better!" And even as I nodded, I felt a huge wave of sadness at the idea.
Yesterday, we finally told the team that we were definitely not going to enroll them in school, and that, at least at this time, the only therapy we wanted to take advantage of was speech therapy, for Malachi.
This did not go over well.
I'm going to spare you all the hours-long rant I could go into about the struggle that ensued, and just sum it up to say that now, I am deeply shaken. I do not want to torment my children (and it is
tormenting them - the stress, meltdowns and fears I've dealt with since we started going to the school tells me that) to train them to fit in the NT mold and to eliminate behaviors that generally do no harm but make NT people feel uncomfortable. Please, don't get me wrong; I want to help my children develop skills to help them through this life. But I do not want to train them out of being who they are.
My biggest fear, one that the psychologist (not a mind-manipulator for nothing, that one!) touched on, is that if I don't do this, if I don't put them in every kind of therapy, take advantage of every kind of early intervention (I LOATHE that word!), put them on such-and-such diet, and basically turn their lives into one long intervention-fest, my children will never be able to survive independantly. That scares me.
Now, to be completely honest, I would love for my children to live with me always, if that's what they would like. I would be perfectly happy to have a generational home, with their familes (if they want them) all under one roof. I'm okay with that. 18-and-out was never my thing anyhow.
But what happens to my kids when I die? I know I won't always be here, and of course I'm tormented by the idea of my brilliant, beautiful, loving, wonderful, autistic children living in some kind of institution. And that's the future that the team painted for me - me, my husband, and two pathetic, lonely, reclusive children, mouldering in a house, until we die and the state comes and takes my babies to some grimy institution. It's my worst fear.
Sp, please, deprogram me. Please, tell me that I'm okay, my kids are okay, and this grim future is painted by someone who really wants those additional grants that the school receives for every "handicapped" child.
Okay, so maybe that's not right, either. But I'm struggling and terrified and I need some help and support.
Thank you, and boy do I hope this doesn't cause a huge uproar. This was the only place I thought I might not get roasted alive for this post.