Sam’s World ~ I’m Not Ready

Knowing Sam has been having a very difficult time controlling his tongue lately, I sat beside him on the bed while he put his shoes on to go to his art lesson.
“Hey, Bud, you’ve been having a hard time lately listening and being qui–“
Cutting me off, “I know I should just stop talking.”
“No, Sam I just want you to know you can’t do that with Mr. K.”
“I never do that to him. I never will. It’s just you and Dad.”
Smiling a little at his forthrightness, “You shouldn’t do it with us either. Why do you do it with Mom and Dad?”
He shrugs, “I don’t know. I don’t have any idea what I’m doing.”

And that about sums up the situation we’re currently in with our precious boy, autism, and puberty. None of us have any idea what we’re doing. Thankfully Rob, having been a boy going through puberty, knows way more than either Sam or I. Which means he has insight into what his son is feeling and can soothe my anxiety because I am completely clueless. I mean, seriously, I had three sisters and any male cousins I had were older or lived away. I pretty much thought puberty for boys made them stink and grow hair and stuff. Turns out boys are just as hormonal as girls, only instead of tears you get a sort of anger and a need to fight dragons.

Sunday night saw a melt down of epic proportions with Sam, something we haven’t seen in a really long time. The last one that I really remember as ‘bad’ was a few years ago when someone bumped into him and his lemonade spilled. Sam has always freaked out over spills…like crying and babbling and an overall physical reaction. Sunday was not a spill but it was all that plus more. It took hours for him to settle back down.

And this is what I realized. I never forget Sam has autism but I can forget how hard autism can be. It’s been a while since I’ve felt that gut wrenching fear for my son…that somehow this is it and we won’t be able to reach any further in to pull him any further out. The fear that this time we won’t find the key that unlocks a situation for him…that somehow we’ve lost that sweet little boy that I love so much.

My husband is much wiser than I and of course much calmer. (Thank you God!) He reminded me that we’ve been here before and that we’ve figured it out. And Sam has figured it out. And that it will happen again. So I took a deep breath and grabbed the reins of my run away emotions.

On Monday Sam did ok. His unwillingness to accept an answer that he doesn’t like causes some serious mouth trouble…either with babbling or just flat out arguing. It’s all wrapped up with silly hand motions and weird mouth contortions. Dinner that night got a little fractious because he wanted to say something that for several reasons we didn’t want him to say. There was a brief skirmish as father and son squared off. Father won and the result was Sam needed to eat his dinner in silence. Which he did. For twenty minutes he ate without talking, making strange noises, or flapping his body all over the place. It was a victory because he had found the self control to do what was asked of him.

Later that evening father and son squared off again. This time over a ginormous bowl of popcorn that Sam had made. There was some back talk over being told he couldn’t eat it all and when he refused to stop carrying on about it, he wasn’t allowed to have any. (This is a major penalty for the boy…popcorn is one of his absolute favorite snacks.) While not as distraught as I had been the night before, my heart was still heavy for him. And I’ll admit more than a little bit for myself. I was having visions of the next few years being nothing but one struggle and battle after another and frankly just the thought was exhausting and sad.

You have to understand that with all the stuff that comes along with autism we’ve got this awesome kid that changes the way we see the world. He can make us laugh like nobody’s business and is just generally a joy to be around. The idea that a flood of hormones would possibly wash all that way is very disturbing to me. I think it’s what every parent feels as they realize their child is growing up only we have this twist on it because  Sam isn’t going to grow up like the rest of the world. And we’re not really sure what that means. Currently there is very little in place for adults with autism. All the money and effort is put mostly into early intervention and research. I get it. I understand why things work the way they do but it seems a little short sighted to not realize that autistic children will become autistic adults and that they will still have needs. But I guess that is just the next part of our journey with Sam and my husband is completely right…we’ll figure it out. And Sam will figure it out too.

He did with the popcorn Monday night. After he was in his room for QT (quiet time) he delivered this telegram to our room.

Dear Mom and Dad,
By the time you read this, I will be playing regretfully. I’m so sorry about what I said. I will no longer eat popcorn so late but will by day.

So my boy may be taller than me already. And he may be starting to stink and grow hair and stuff but that sweetness is still there. And that makes this mamma’s heart very very happy.

12 thoughts on “Sam’s World ~ I’m Not Ready

  1. I find it very comforting when other parents nod in agreement and share when their kids are hitting a rough patch too…it's a good reminder that while Sam may be a little different he's still normal. So thanks, for that friend 🙂


  2. Sam was/is a special blessing. God knows/has always known where He was putting him. He/all concerned will be fine with prayer [trust in the Lord] and some hard work. If anyone could be \”the cutting edge\” for finding out how to prepare and deal with the transition into being an adult with autism, it is your family. I have no doubt about what I am telling you.Rom 8:28 And we know that all things work together for good to them that love God, to them who are the called according to his purpose. Love yaDaddy


  3. Oh I just love you. I love this post. God sure does know what he is doing when he assigns parents to children. You are the exact right parents for Sam.The beginning also made me laugh because when I try and talk out a problem with my boys and ask them why they did something I frequently get \”I don't know.\” One of them came out and said, \”I don't know. I'm just a kid. I don't know what I'm doing!\” And that was a wake up call. A good reminder for me too.LOVE Sam's note. There really is such wisdom there. 🙂


  4. hi… thanks for your comment over at my blog… because it led me here to you. What a sweet note from your boy. and since you asked.. the photos over at mine are from the Maldives, which I am happy to call home.


  5. Love Sam's cool hat. Love his note to you. Love your mama's heart. Love the comment from you daddy. Happy Mother's Day, friend. 🙂


  6. I feel your mother's heart. Life isn't always easy when we love someone with autism – but it sure is interesting, unexpected, and a bit of an adventure. You will figure it out and so will he. Blessings to you.


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