I want to apologize for last night's post. I was, to put it mildly, frustrated and a bit disheartened. Things have been going so well with Rachel (with the exception of the ADHD issues) for such a long time that, when things surface, it always seems to be a slap in the face. And to top it off, I was getting near the end of my stint as a single parent around here (I still have no clue how the many single parents manage). This was my first true "venting" post in a long time.
But I think the problem is that, as I mentioned, it's always been difficult for me to cope with Rachel being "Autistic". I never seemed to have this trouble with Simon. But I refused to see it for a long time -- when the symptoms were present but nothing was being addressed, when we first requested assistance, when people started telling me she was on the spectrum, even when we started seeing the drastic improvements when we started initiating the ABA. That was probably when it started sinking in -- if she wasn't autistic, it wouldn't have been so successful (well, it would be successful, but it wouldn't be the only thing that we were seeing such success). Even now, I often seem to forget about the "Autism" and focus on the ADHD. It's still the "A-word", but perhaps it's easier for me to face.
But she IS autistic. I know this, and have for quite some time now. We have these moments where it just comes and knocks me back to reality. And every time it happens, it really feels like we've taken so many steps back. It's a reminder of how far behind she really is, despite everything we do. It's a reminder that she will probably never be what most people consider "normal". I mean, what "normal" 4.5 year old takes their poop and smears it on themselves, the wall, the bed, the kitchen table, etc.? A "normal" child doesn't do this at this age. An "autistic" child does. And her diagnosis is "Classic Autism, Severe". Even though she has learned to talk; even though she's now saying special things like "I Love You!"; even though she is extremely intelligent and an interesting individual who I love very very much, she still has "autism".
Autism isn't something that is "cured", despite what people like Jenny McCarthy say. Autism isn't something that will ever leave. It's a part of who my younger children are. What I can hope for is that they learn to control these impulses and can learn to live functional lives. Hopefully they'll be able to live on their own. Hopefully, they'll be able to have families of their own. But today, I can't know if that is what the future holds in store for them. And times like this week, it's just a harsh reminder of these truths.
Sometimes seeing the manifestation of autism really bothers me. I feel kind of guilty, and I wonder why I (thankfully) don't feel this way all of the time.
ReplyDeleteI like to think it is natural (not normal!) to feel frustrated from time to time. It doesn't make it easier, but it reminds me that it does pass.
Hope you are feeling better....