Sometimes, the tiniest tastes, leave you fat and happy.

by statia on April 25, 2010

It was almost two years ago, when I had the distinct gut feeling that something was wrong with the Mini.   His development was both typical and atypical.   He hit a lot of his milestones early or on time.  He laughed at an appropriate age.  I could make him laugh, although, it could take a bit of cajoling on my part.   Truthfully, the Meester made him laugh easier than I did, but he wasn’t the type of kid that didn’t smile or laugh.   He walked on the earlier side, something I’m still impatiently waiting for my daughter to do already, because at nearly 25lbs, my arms are going numb.   He was social in his own way.

His atypical development was the fact that he could entertain himself for long periods of time.  Part of this is genetic.  The Meester was largely the same way.   He loved to spin things, something that I knew wasn’t normal.  Once he hit 15 months, at his sickest, he would pace or just bolt.  You put him down and forget it, there was no getting his attention or getting him to listen.  He would.just.run.   This was so anxiety provoking and exhausting for me.  People would watch him and ask me if I was exhausted.   I wanted to say “helllooooooooooooo stupid, what do you think?”   Then there was the language.  He mimicked some words, but had no real desire to communicate with us, either via pointing or babbling.   I remember at 15 months, waiting every day for this so-called language explosion, and it never happening.

Once he started services, we had the new and improved Mini.  He’s steadily, and slowly made gains.  At three, he has tons of words.  He knows his alphabet and has for a long time.  Something I didn’t teach him.  This is just the way his brain works.  He absorbs things like a sponge.   His memory for things is insane.   He speaks very clear for his age.  I rarely have a hard time understanding his language, unlike some of his friends of the same age.    But his spontaneous language is behind that of his peers.

It’s been close to a week that we’ve gotten our diagnosis.   My first reaction was relief, quickly followed by guns blazing.  We’re going to help him.  We’re going to do whatever it takes to give him the best there is to offer.   Then it switched to despair.  What if he’s never going to get better?  What if he spends his whole life trying to communicate and all he can do is spout off random sentences that are completely irrelevant to the topic?    Followed by “get up, Statia.  You HAVE to do this.  You haven’t ever backed down.  You’re not going to stop now. ”   The Meester likes to describe our relationship using a microscope metaphor.    He looks at things at 10x.  I look at things at 400x.   We balance each other out this way, but he tells people, “if it weren’t for her, we would not be where we are today.”   Sometimes my 400x is a detriment.  It causes me to unnecessarily freak out.  Sometimes I have to step back and look at the bigger picture.

The Mini’s preschool teacher is full of the awesome.  She was recommended to us by one of his Early Intervention teachers.   She has a nephew on the spectrum, so she’s familiar with kids who are “different.”   She loves her kids.  It’s so obvious.   Even given her hot temper at the mercy of stupid people, she remains calm with the kids.   I sometimes want to ship the Mini off to her when MY patience is on its last thread.    She is fully aware of the Mini’s issues.  She calls him “the gray area kid.”   The Mini loves his teachers and his class.  He wants so badly to be social and he tries in his own way.  He has a hard time initiating, but whenever he does, I always get an email.   She’ll always send me pictures of him, telling me that he played ball with Stella, or that he played Ring Around the Rosie with Steven.   And it’s those little moments.  Those moments that make tears well up in my eyes.    Knowing that he wants that social interaction, but isn’t quite sure how to put it together.  That right there is me looking at 10x

It’s those moments that tell me that deep down, everything is going to be OK.

{ 7 comments }

Kath April 26, 2010 at 5:08 am

Dear Statia, I can imagine the various reactions you’re having — not too difficult, incidentally, as you describe them so very well. But it really sounds to me as if he will be able to profit immensely from targeted help, as the social urge is already there. And I love the way his preschool teacher sounds. How wonderful that she sends you e-mails about his social development — what a great gift to know that she’s in your corner, and that she loves him.

Shelly April 26, 2010 at 7:40 am

Everything WILL be okay. Well, except for that excellent memory of his. That is totally going to bite you in the ass some days “But, Mommy, you said ….”

btss April 26, 2010 at 11:40 am

I think that grasping onto those pieces of hope when we are given them is exactly what we need to brace us, inspire us, or sustain us…even if for the moment. I can’t say, “Hang in there, this will get easier,” because I don’t know that. What I do know is that you are one hell of a strong woman and you will find a way to function with and around this diagnosis. Everything is still new now…

Mrs.Mayhem April 26, 2010 at 2:37 pm

I have no experience with the autism spectrum, but I do have experience dealing with the shock that something is not as you would choose for your child. My 10 year old son is hard of hearing, and has been since birth. His hearing loss is progressive, and most likely, he will just wake up one day completely deaf.

Dealing with my son’s hearing loss has been a long, hard journey. I know you didn’t ask for advice, but I’d like to offer some: tackle the situation and do whatever you can to help your son be the best that he can be. Then just love him (as you already do). The world is all the richer for being full of unique people.

diamond dave April 26, 2010 at 6:14 pm

I’ve been pretty busy the last few weeks and I haven’t been getting around the blogs as much as like, so doing a little catchup.

As you are hopefully finding out, autism doesn’t have to be the end of the world, especially if it can be diagnosed and worked with early on. I have a daughter who was borderline autistic at a young age, but is a functional adult now and has given us two grandkids. I also have a young cousin who’s moderately autistic, but early intervention and intensive therapy has made a world of difference with him. Contrary to popular belief, many autistic children can understand and show love and affection, they just have a different perspective on their surroundings than the rest of us and we have to work within those boundaries in order to communicate on their level. Prayers for you and your child.

Purdy Bird April 27, 2010 at 11:06 am

Its great that he has a teacher that you and he love and that he’s getting help in the areas he needs. You are a wonderful advocate for him and I feel like those days when we get a glimpse of progress and positivity give us a little more energy to keep pushing on days its hard.

lynne May 1, 2010 at 10:53 pm

Hi – I found your blog by following your comment over at squidalicious. The emotional rollercoaster you describe going through since getting the diagnosis is achingly familiar. My son is 6 and we got his ados results about 18 months ago. He’s changed so much in those 18 months that is seems much longer than a year and a half. Getting the diagnosis set us on the right path, gave us the right tools and resources and he’s made some incredible progress. So in those low moments, keep reminding yourself – he will keep developing, he will learn skills, and he will amaze you because you’ll know how hard he worked to do it.

The first weeks and months can be overwhelming and emotionally draining. It’s really easy to get wrapped up in learning everything you can about autism, but don’t forget to tend to yourself. Every once in awhile, do something that is totally for you and has nothing to do with your wonderful kids. Because you’re right – everything is going to be OK.

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