Hearing no.

I'm pretty sure one of the most depressing parts about parenting a child with significant disabilities is hearing the word "no" with unbelievable frequency. No, he cannot do that. No, he is not welcome here. No, your insurance doesn't cover that. There are NO available slots. That service is NOT available. I know this is a program for children with disabilities but yours has too much need. We do not have funds. Or there is the yes that is really a no: Yes, your child can be in this program and that will cost you $$$$$ which you cannot and never will be able to afford. Before B. I don't think I ever heard the word no. Pretty much I set goals, worked hard, then I achieved my goal. Autism doesn't roll like that.

I've heard the word no too much lately. Which brings complete frustration. I wish I didn't let people have so much power over my feelings like that. It's one thing to be frustrated with my child's pace and difficulties, where I can blame the disability. But when I advocate for him and fail to get him what he needs, that's all on me, that's MY failure.

Suck it up.

Well, the pity party is over. Grief comes in waves and right now things are pretty status quo. It's not that I'm enjoying having autism in my life. And I'm certainly not enjoying the tantrums, the therapy appts all over the metropolis, the seemingly-endless advocacy. But today, maybe just today, life is ok.

Sometimes I wonder if it's my attitude that is really the problem. After all, attitude is everything, attitude is the minds paintbrush, [insert your own cliche attitude quote right here]. I try to be optimistic. But it's difficult when you are faced with a situation where it is a given that the end will not be good. Or the end will not be what I wanted. And it's also difficult to feel positive when I witness such ugliness and discrimination toward my child with autism. If you want to get a sense of what I'm talking about, just bring my child to a mall, playground, or out to eat- you will be turning heads, receiving glares, and hearing parents whisper to their child "I am sooo glad you don't act like that."

On the flip side, maybe autism really does suck and it's not my attitude. Most parents I know with an autistic child, especially a child who tends toward the severe end, are hard pressed to find blessings in this mess of smeared poo. I'm not saying there are none, but just that there are extremely few. I often wonder if it's the autism that makes us jaded or what. In between the medical appts, the head-splitting tantrums, getting kicked punched and bitten, the paperwork, being pissed at the school for being shitty, the judgment from "the public", the worrying about the future... there is little time for thoughts of sunshine and rainbows and puppies.

But today I am just here. Everything is settled and calm. I just need an outsider to look in and tell me if I've changed or if things are truly better. This is the normal. Perhaps acceptance isn't too far away.

School is almost here. Kindergarten.

I got caught up in life recently. And the truth is, I didn't know what to blog about again.

Ben is going to start Kindergarten in a couple weeks. It's big and it's no big deal, at the same time. I generally try not to over-think things like this. But it's certainly not lost on me that every other 5 year old that I know is gearing up to go to our neighborhood school.

Literally, the school is in our neighborhood- the neighborhood that on that fateful day in Dec 2004 I brought a tiny 7lb perfectly healthy newborn home from the hospital. Then we did the playgroups and picnics and the birthday parties. We even tried the preschool that Ben's older sister and brother attended. I don't have to tell you how that ended, but I will share that it was a painful few years watching those babies and toddlers fly by him. And then watching kids years his junior pass him.

I'd like to say I'm over it, but of course, I'm no where near over it. The pain doesn't really diminish, it just changes. Now it is hard to even imagine how things should have been- what it would feel like if Ben were going to that school and we were sitting by the mailbox to find out who his teacher will be and how many classmates we know. And he'd be talking. And I'd still be talking to those other parents about all-things-kindergarten. Hard to envision because that is so far from the reality? Anyway, thinking about the should-have-beens is not all that productive.

So I will vow to live in the present as best as I can. I like the school that he will be attending. I am looking forward to a good experience and positive changes that I see happening with this transition. I will drop off my "big kids" at the neighborhood school and I will focus on them and their teachers and classmates. But I will not be stealing a glance down the kindergarten hall. And no, I don't want to hear how upset you are about how your kid didn't win the teacher lottery or didn't get to be classmates with his best friend. Think about it.