By The Wiz
Guest post by Vada.
I’ve been meaning to do a post on autism for a while. This is not it. Someone on a list I’m on sent a link to a couple of videos at www.whatkindofworlddoyouwant.com
I watched them, and a few others, and I sat in our office
and just cried. This post is what came out afterwards. I’ll probably
write the original post, which is more about the facts of autism and
what we’re doing to fight it, soon, over at ZD, so stay tuned for that if
Spencer is a people person. He always has been.
When he was just a baby he’d get sad and frustrated because usually only I was around, and I couldn’t spend all my time just playing with him. Even when I was playing with him, that wasn’t always great, because, after all, I was
just one person. We joked that he should be a fifth or sixth child…
he’d have loved it. He loved visiting his cousins. They ran around him
screaming, and piled toys all over him, and he was in heaven. He loved
when people came to the house to visit. He’d cry when they left, no
matter who they were.
Spencer was a little slow in talking at first, but not too far behind.
By the time he was one he said dog, dad, and a few other words
occasionally. Dog was his favorite word by far. Buddy (his grandparent’s
dog) was his best friend, and they had an awesome time chasing each
other. The next few months he only added a couple of words to his
vocabulary, but he still wasn’t too far behind.
At 16 months Spencer found some blocks to play with. He had so much fun
lining up those blocks. He’d put all the green and blue letters up, and
once he’d made a line he’d move the line to a new place. We thought it
was very cute. Then he started lining up his cars. They’d line up, and
then the whole line would drive to a new location, one car at a time. It
really was cute.
It was just after this we first wondered if Spencer had some
developmental issues. The only signs were that his speech was a little
behind and his tendency to line up toys. We talked about it a little,
but employed a “let’s wait and see what happens” philosophy.
By the time Spencer was 2 we knew that something wasn’t quite right. His
vocabulary wasn’t really any bigger than when he was one, though he’d
lost some words and gained others. We weren’t really sure what the issue
was. We talked about hearing problems, ADHD, autism, and OCD. We decided
we should get him some early intervention, but it didn’t happen right
away. We went to Puerto Rico for a few months and then moved a month
later, so we didn’t get to early intervention until he was 2.5.
By the time we did get intervention, I was more sure that he had autism.
I wasn’t entirely sure, and I definitely wanted him evaluated by
professionals, but I had a better idea of what was going on. We did get
him evaluated, and at the first diagnosis they said that he had many of
the characteristics of autism, but he also had many “confounding
behaviors.” (I wanted to shout “Yes!” In fact, I might have.) You see,
Spencer didn’t run from strangers. He liked loud noises. He loved to
give and receive hugs. He was happy for anyone to come over, and sad to
see them go. He didn’t like to sit and cuddle, because the kid has
always been a goer, but he would give me hugs any time I asked. These
were definitely “confounding behaviors.”
We scheduled a more in-depth evaluation for a month later. We went to
it, and they said that Spencer was, indeed, on the autistic spectrum. It
was a bit of a blow, but we were pretty prepared for it by then. Our
biggest concerns were getting help for him so he could get better. We
started speech and behavioral therapy. For the first couple of months it
was hard for me to see progress. His therapists seemed to see some,
though. He would repeat words a slightly higher percentage of the time,
and he seemed to turn his back on us less when playing, and be more
willing to sit down and play.
After a couple of months he had a few week explosion of progress. He
would say so much more. He’d repeat more words, and he said a few more
things spontaneously, too. He would sometimes even let his little
brother play with the same toy as him during therapy. It was so great.
Since then he’s seemed to level off a bit again. He’s not backsliding,
though, so that’s good. Now when he takes my hand and drags me to what
he wants I don’t just get excited that he’s figured out how to
communicate what he wants (we did a few months ago). Now I ask him to
say “please” before I get it for him, and he generally will.
His progress really is huge. Sometimes I have to think back and remember
what I expected of him a few months ago and compare it to what I expect
now. It makes me grateful for how far we’ve come. But I also struggle as
I see him getting worse in other areas. He used to love nursery, though
he never liked lesson time. Now he usually has to leave nursery for half
an hour or so to keep from completely losing it. He generally sits under
the table in the foyer, hiding under the tablecloth. While he’s always
liked hide and seek, he never wanted to get away from people to calm
Then I look and think even farther back, and I get more upset. I
occasionally cry for hours, like I did tonight. I look at the pictures
of him as a happy, cheerful, playful baby, and I wonder, where did my
Spencer go? How do I get him back? I miss him desperately.
I still see signs of the true Spencer. We went to an aquarium a few
months ago, and he got so excited. He grabbed our hands and started
running through the exhibits, pointing to everything. We were so happy
and excited that we decided to get a year-long membership. We’ve already
been back once, and he loved it just as much the second time. One of the
words he’s learned fairly recently is “look,” and he points and says it
all the time. He wants to show us things (though sometimes we really
have no clue what).
He’s not at all gentle with his little brother, but they are friends,
and Spencer loves him. He gives him hugs (generally knocking him over in
the process), and wants to play with him. When he hears his brother cry
he says “Oh, no! Baby sad!” If he thinks I don’t know, or if I just
don’t respond fast enough he comes and gets me and repeats, “Oh no! Baby
sad!” (Of course, he doesn’t do this if he’s the reason his brother is
crying.) The first thing he does when he gets up from bed or a nap is go
to his brother’s door and knock or say “baby.” He wants his brother to
get up and play with him.
Many days I’m happy with the progress we’ve made. Most days his
diagnosis is not a big deal for me. It’s something we’re dealing with,
and I know he is improving. I have faith that he’ll continue to improve
and be able to participate normally in school, church, and whatever else
he wants to do.
Other days I look back at how he was when he was younger, and I think
about the spirit that’s inside him, and I just cry. I want to see that
spirit more. I want him to spend his time excited by and about the world
around him. I want him to run in and tell me all the cool things he saw.
I want him to beg me to take him to his cousins’ house, because he wants
tons of kids around to play with. I know who my Spencer is, deep down,
and I want him to be able to express that. I want others to see the
happy, joyful, playful, loving spirit that he has. I want them to be
able to experience it for themselves and not just have to take my word
for it. I have hope and faith that we’ll get there in the end, but I get
frustrated with the here and now, and some days I cry. Because I miss my
Spencer, and I want him back.
I’ve never posted either of my kids names on a blog before, and I was
a little hesitant to do it now, but I decided to anyway. This post is
all about finding my son, and who he really is, and a name is a big part
of our identity. The post just isn’t the same without it.
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