Today,(at the time this was written) I got a phone call from the therapy center we attend for various therapies, OT (Occupational Therapy) and Speech, and hopefully in the future, social skills and swimming. We were planning on attending a Halloween party we’d signed up for while visiting the center, a special party at a nice hotel, and they were confirming our participation. Not only that, they let us know that we’d been put in a drawing and won a special pizza party and overnight stay.
I was thrilled at first, called my husband and let him know that we’d get to stay in a really nice hotel and our son would be having an extra special birthday since we were throwing his party that morning.
Then the guilt set in. I felt like I was taking advantage, that maybe we didn’t deserve this. My son has a mild form of Autism, he’s not obviously or severely disabled. I began to worry that the other parents would judge us for not being disabled enough and that we were stealing a spot from a family that might be more deserving or more needful of the getaway.
Then I stopped myself. My son would not qualify for therapy if he did not need it. He may be able to pass in most situations, but he does have needs that other children do not have. I shouldn’t compare him or my family to others.
My son has been kicked out of a preschool, suspended from kindergarten, and even when I explained that my child has special needs, we were asked to leave a Tae Kwon Do program we paid for. We’ve been judged, treated badly and taken advantage of because it’s hard enough to just try new things and endure the judgement. By the time we’re asked to leave, I’ve lost the will to fight, no longer even want to be involved with people who would do this to my little boy and judge me to be a horrible parent. So we just leave.
My son has only recently been invited to birthday parties. He has only made friends in the last year. He just turned eight. We are excited he is being mainstreamed in to a General Ed classroom most the day with a full time aid, speech, extra recess and extra PE. I’ve written off the possibility of ever sending him to camp or putting him into sports programs because it’s not worth the risk.
Instead, Special Olympics for sports and day programs run by therapy centers are the only programs I’ll consider. Even Cub Scouts was a stretch, but our pack is tiny, and we have a good group of parents. I’ve learned my lesson through rejection and judgement. And yet, I feel guilty that these programs are paid for through our insurance, or are free… or that we won a special night out thanks to our involvement in a therapy center.
And then I think about the fact that I stay home with my child not just because I want to, but because I have to. I have to be here to send him off on the bus and be here to pick him up. I wouldn’t trust him in a day care or after school program. I have to be able to take him to therapy at least once a week and to his doctor appointments every couple months, if not more.
My husband and I rarely go out without him because if we don’t have a family member to watch him, we just don’t go out. We wouldn’t trust most sitters, not that there aren’t great sitters, but because my child does have special needs and can be unpredictable. And because we’re a one income household, we can’t really afford one anyway.
So I’m not going to feel guilty about this little surprise. Just because I managed to sign up for something, take advantage of a situation doesn’t mean we aren’t deserving. Every child is deserving, and this is an opportunity. It doesn’t make up for the times we’ve struggled, the distinct disappointment of feeling different, out of place, rejected and judged. But it does give me hope for the future, and hope that we are finally finding out community where our family will be accepted.