The Others.

This is a post about The Others. The Others is a tongue-in-cheek expression that my friend Cathy borrowed from the TV show Lost to describe the siblings of children with autism. Read her moving blog post here.
I have two "others" and they are both older than their autistic brother. These two have seen more in their young lives than many. They have seen miracles and they have seen deep ugliness, and many shades in between. Though I have shielded them from much, still they see and hear. And how could they not? The number of hours they have spent in the car, at therapy appointments, at doctor appointments, with people invading our house (oh, the number of people who visit our house!!) is innumerable. Trust me when I tell you: this was not how I had envisioned raising children would be.
My own life growing up was chaotic. I always said to myself that you have two chances to have a family: the first one is given to you, the one you are born into; the second you create from your choices. How I wish that were true! It is somewhat true. I had such a strong desire to have a happy family as an adult. I wanted to have 4 or 5 kids and I wanted for them to have a happy, carefree childhood. I knew nothing was perfect and I knew I couldn't be a perfect mom. But I was determined to have that family. I wanted it for me, I wanted it for my children. It didn't happen like that.
I cannot speak for my children but I can tell you some things that they have said:
"Now that B is 3 years old, he will probably start talking" :(
"B. hates me and I hate him, that's just how it is."
From hiding under the table at Chick-fil-a "I am so embarrassed, everyone is staring"
"Can I be the one who gives him that cookie, then maybe he will like me and stop hurting me"
"AWWWHHHH waaahhhaaa, he pulled my hair out!" *tears*
Those are all from my 8 year old, who is 18 months older than B. It's hard to believe that they are so close in age. I just had a little communication with the social worker at his elementary school the other day. I asked her if there were scholarship spots in an after school art class (and I explained that we were on a limited income and plus we spend any extra money on T's brother's therapies and medicines). She said that T. was not really on her radar. The Others should always be on the radar for school social workers. They should be on all of our radars. I was angry about it and I'll admit some of it was unresolved issues with me. Namely that this is the school that serves kids in our area, the school my daughter attended for 6 years and now T is in his 4th year there. Do they even remember that my autistic son should also be going there? Have they forgotten or was he so far off their radar that they just simply never gave it a thought?
Then there is my daughter. She will be 11 next week, going on 50. She is a wise old soul. She is patient and compliant. I wish I could have a quarter of her patience. She knows so much about autism, but is never indignant and pissed like me. She goes with the flow, she will forgive you over and over. B loves her like nobody else. And the feeling is mutual. I do think she would be this compassionate even if she never had autism in her brother because she truly came to me this way. But there is no denying that having a brother with autism has touched her and changed her mostly in positive ways.
I have two Others and I'm still learning how to deal with them, especially since they are both so different. I have to always remind myself that these Others are constantly there. They watch me and take cues from me about how to treat their brother. I feel in the future that it will be The Others around the world that make some changes for autism. They are the ones that have seen the painful side of autism, not just the Temple Grandin movie or the savant who can play piano by ear. They know the suffering and can work for a cure and treatment.

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.