Bits and Pieces

I have always posted fairly cohesive and (hopefully) well thought out essays here at HP. But this month, once again the 10th of the month had managed to sneak up on me and is now inches away from biting me on the butt.

The evening of the 9th found me staring at the HP folder on my computer and finding 3 partially written posts and a few good ideas hastily sketched out, but nothing near ready to go up.

There comes a time in every bloggers life when we have to make the choice between being good to our blog and being good to our families. I saw that I could stay up all night or in all day on Sunday and write an amazing post for Hopeful Parents. Or I could get enough sleep, and take my kids off on a fun adventure on a beautiful summer Sunday. (Sunny, 80’s, low humidity – PERFECT!)

So you know what I’m going to choose.

But I won’t go back on my commitment to HP, this being my 12th post here, the completion of my first year’s cycle. So what I will be doing today is a bit of a brain dump. Bestowing upon you some of the bits and pieces of what’s floating around in my brain about autism and my son Jacob these days…

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I know I made it sound like a no-brainer that I would chose a day out with my family over a day enslaved to the computer churning out a post. But really? It was touch and go there for a while. Because while I love my son Jacob to pieces, he is really difficult to be with these days.

I thought life would get easier and better once he got more involved in the world, more communicative. And in many ways, it truly has. But also? I forgot how utterly exhausting 3 to 4 year-olds are. And that’s where Jake is at developmentally in many ways.

He makes the same requests, and asks the same questions over and over and over again. He doesn’t take no for an answer. He doesn’t even take yes for an answer and, when excited, will ask over and over again for permission to do something, even after I have already given my assent.

Also, he wants me to play with him, engage with him, just about all the time. Which is a wonderful, wonderful thing. But also? Exhausting.

What was that old saying? Be careful what you wish for… (Not that I would ever wish for Jake to go back to his old, spacey, lost-in-self ways)

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The thing is? Jake’s been talking nonstop to me & his brother for some time, in many ways we’re used to it. But now he’s taken to talking to everyone else too.

And I mean everyone. Strangers & friends alike. People on the street. Jake has decided he has to talk to pretty much everyone he sees.

And? He’s BOSSY.

"Hello, girl, sit over THERE!"

“Excuse me, man, man? Do you like monkeys? Be a monkey!”

So when we go out I really have to be right at his elbow, glued to his side again. Or else he will get himself in a heap of trouble. Because while some people think he’s cute….

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Another part of the exhausting? Jake is getting very determined about his desires. Like yesterday when Jacob insisted on haircuts. We had other plans, but he woke up in the morning pulling at his hair and yelling “I HATE this, mommy!” I think it looks adorable shaggy and curly, but Jacob? Clearly, not so much so.

He’s been mentioning a haircut for about a week, so I knew it had to be right away. One time when I ignored his need to be shorn, he tried to do the job himself. Bad idea.

So the boys got haircuts yesterday.

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I am deeply peeved that I still haven’t found a real friend for Jake yet. It’s a conflagration of so many variables, and they all add up to: failure. 

As connected as I am to the autism/SN parenting online world, and in spite of the thousands of SN families here in this giant city we call home? I actually know very few SN families here in NYC.

The families I met when the kids were young? The autistic kids are mostly sensory avoiders, and have really different needs than Jake, can't do the things he loves.

Others started out seemingly the same, and are now very mild, now mainstreamed. It’s not a good fit. I’m truly happy for those families, but sad for us and our inability to hang out.

The kids from his school are scattered among the 5 boros, none close to us.

A million excuses. But still, I need to try harder. Jake NEEDS a friend.

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Also, this week, I was deeply offended by that CNN.com article about “permissive parenting” written by an uber-judgmental & misguided man who believes all children’s less than perfect behavior can be completely controlled solely by a parental look. In that article he lets us know that any of us who can’t do this? Are terrible parents.

Because of course all kids are the same and this jerk has never heard of Autism/PDD-NOS/Asberger's Syndrome/OCD/ADHD/Sensory Integration Disorder/Post Traumatic Stress Disorder/Bi-Polar Disorder/Anxiety Disorder/Language Processing Disorder/Tourette's Syndrome. Because all kids are the same, right?

I had a lot of snarkier things to say about this that I typed and deleted. Trying to keep things positive.

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OK, brain is nearly empty, time to take the kids to the park (I was considering the beach but I am not yet completely over a nasty respiratory infection and don’t think I could quite manage them safely enough at the beach, with the waves and all. Next week, maybe)

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We went to the park spent all day. The kids had a great time. Came home happy & exhausted. Now they are in bed, asleep, and I get to clean up & paste up this post, finally.

Jacob did, indeed, try to talk to EVERYONE. Wonderful and exceedingly difficult, all at the same time.

Autism.  Always an adventure. 

 

Varda writes about "birth, death and all the messy stuff in the middle" on her blog "The Squashed Bologna: a slice of life in the sandwich generation"  She also tweets as @Squashedmom. Varda is proud to be a Hopeful Parent.