I have… more like these past few months. I hate autism!!! It’s taken my angel away somewhere inside her own head and it won’t let her go. I just wanted my kiddo to be typical, if not perfect. No one is perfect, I know… yada yada, but I just wanted her to have boyfriends, go to prom, go to college, etc…
I’m sick of the agency runaround, the “hurry-up-and-wait” syndrome that infects every part of the disability world, the paperwork game you have to play if you are the parent of an autistic child (or other special needs). You need a service, fill out a tree’s worth of paperwork and then you W-A-I-T for months, and you may not even get it! Do I have the inner strength to keep this up? Do I have the emotional strength to fight for her rights and to even keep dealing with her condition when there are NO real answers or help out there???
I don’t work and I’m barely surviving. I’d give my friggin’ SOUL for her to not have this frustrating, mystifying, and wearying condition. Sometimes I can’t think straight, sometimes I don’t want to get out of bed in the morning but I do because she needs me. Do I have the strength to stay strong 100% of the time? It’s so damn hard and I worry all the time about everything! I’m not a happy person most of the time. I snap at friends and family, I’m tired all the time, I don’t do anything to take care of myself (get out without the kiddo, take time for myself)because I either feel guilty or I don’t have time.
People judge you when you have a child that isn’t “normal”, you get those fuckin’ looks from people who don’t have one FUCKIN’ iota of a clue! Not many people know what autism is or what it entails for the rest of one’s life. My daughter just picked up a handful of gravel at the park this week and I wanted to cry! Why??? Because it’s a HUGE breakthrough for her tactile defensiveness and people who don’t have autistic kids wouldn’t understand how huge a thing it is. They can take everything for granted, I can’t.
I’ve had to put my life on hold to become my daughter’s advocate for services and her rights. I’m the only one who will do it. Just finished school when she was diagnosed so my life took a big 180 into SUCKVILLE. I know what you may be thinking… I’m lucky she can walk, talk (she is starting to), eat without help, get out of bed unlike some kids who have Cerebral Palsy or worse, and all that but it’s still a devastating thing. As her teacher puts it, having an autistic child is the “death of a dream”.
So yeah… I’ve been in a bad mood for awhile.