The King’s Speech, Stuttering, Tics, PANDAS

The other night we went to see The King’s Speech. If you have not see it yet, I’m sure you’ve at least heard about this gorgeous movie. Colin Firth won an Oscar last night for his performance in it. The film is about a relationship between a speech therapist and a man who eventually becomes the King of England.

The future king has a stutter, …the result of emotional trauma as a child.

Seth stammers. Or is it a vocal tic? Or a combo of both.

Sometimes it’s barely noticeable. Sometimes it can take him 15 tries to get the first word of a sentence out.

And watching the movie sent me reeling…all the guilt about what this boy has endured as a special needs sibling. All the moments I had not one drop of energy left for him. I stopped breastfeeding him in one day when he was six months old because I had a panic attack and could not deal and had no support. All the times during those very trying years when I needed to run from the house, to catch my breath, leaving him behind. Both parents got away separately, even just a trip to the grocery store, but he never did.

What was it like for him to be woken from every single sleep as an infant and toddler to the sounds of his sister screaming(not your fault Riley, you could not help it)? What is it like to be so “perfect” all the time, not rocking the boat, because intuitively he knows his mom and dad are counting on him to not make waves.

What’s it been like to never not once take his frustrations out on his sibling, because she can’t help it/handle it/will scream more.

What’s it been like to grow up in a home where it is rarely about him?

Then again, maybe it isn’t a stutter. Maybe it’s PANDAS. Seth’s tics overall have been exacerbating lately, and it happens after he’s been sick. Sometimes I wonder if his love of Michael Jackson’s moves is because they are so jerky and staccato and can hide a lot of tics. Right now it’s a full body seize followed by an arm circle. They change up a lot. He seems to be able to hold them in a bit before really letting them out. Is it Tourettes? For a few weeks I was laying awake at night, wrestling with how to help him, worrying about long term repercussions of an inflamed brain (the hypothesis behind PANDAS and tics) vs. the repercussions of long term anti-biotic use.

After trying many different modalities of boosting his immune system so he will be less susceptible to strep, we are also finally going the antibiotic route for him. We’re at least trying it to see if it helps.

His regular pediatrician doesn’t seem concerned(or knowledgable about PANDAS). He was not at all interested in reading Saving Sammy. I wonder how he would feel if it were his child suddenly wracked with tics overnight?

Luckily, our kids’ other doctor, the one who treats autism is very knowledgeable about PANDAS, and very comfortable treating it. The only problem is she doesn’t take insurance. Which is actually good, because she isn’t governed by insurance companies on how to treat patients, but you know. It costs a lot.

I’m feeling this need to take him away for an extended time, just me and him, go to the mountains. Go to the beach. I don’t know. Not really do-able, but the desire is there. I’ve signed up to teach a Lego class (architecture, history of Lego, etc.) at the co-op because it is his passion.

Lately, I notice in play with other boys he is not standing up for himself. They like to take his hat and play keep-away with it. He acts good natured about it, but I know it bothers him, and there have been times when he’s looked on the verge of crying when it’s happened. (And let me be the first to say, I’d have been the kid having a good old time taking the hat when I was his age). I admit to stepping in and I probably should just let him lose his shit on these kids but I’m not sure he would.

Intuitively I know he is okay. I know he is a deep, deep soul who will be fine, fine, fine. I’m not trying to make drama where drama isn’t due, but I’ve got my eye on you buddy. You will not slip through the cracks. I promise.

Anyway…I loved the The King’s Speech. It was brilliant and beautiful.

Just like my boy.

This entry was posted in special needs siblings, Uncategorized and tagged , , . Bookmark the permalink.

12 Responses to The King’s Speech, Stuttering, Tics, PANDAS

  1. Susan Hendrickson says:

    I heart your Seth!

  2. naomi says:

    I loved the movie as well and learned so much from it.
    Growing up I was that child who didn’t rock the boat in the middle of chaos and I have to say that I think that the fact that Seth has two loving, fantastic parents will have a far more important impact in Seth’s life than the stress of coping with the chaos will. You are his anchors and you’ve given him such a good foundation for dealing with stress in the future.
    xoxo

  3. Carrie Link says:

    Yes, just like your boy. And I know he will not slip through the cracks, not even a toe will go there.

  4. redheadmomma says:

    made me cry. I just loved/hurt at/will not forget this post.

  5. Kathi says:

    You know I understand this so completely! Love to you and Seth. Look at that beautiful boy. Oh and Mom is looking pretty fantastic, too by the way.

  6. Chris Vartorella says:

    No that beautiful boy will not fall between the cracks…. Not with HIS beautiful Mom and Dad and sis…

  7. kario says:

    This boy is loved and he knows it. He is also parented by two human beings which can have its drawbacks from time to time, but it’s definitely more entertaining than having perfect little robots for Mom and Dad. I’m pretty sure that as long as you continue to give yourself a break and love yourself, Seth will be better than fine.

    Love.

  8. Wanda says:

    Gorgeous picture! Yes, he is fine. (Read any appropriate intonation there.) Sorry for the expense and glad you are going to give the treatment a try. I hope it works.

  9. -e- says:

    beautiful brave post. love the simplicity of “got my eye on you buddy.” Isn’t that what each of us needs… to be seen, in focus? I think you should find a way to get someplace fun and in nature for a few days alone together… no, make that together together.

  10. Amanda says:

    well, I know just where you’re coming from. Doctors know the theory but rarely know the practical and they certainly don’t have the emotional ties. Sometimes that’s an advantage but it doesn’t give them the same fight response.

    If you got that feeling to get away with your boy, you should do it. Somehow, sometime, it will happen.

    Thinking of you

  11. Kim says:

    LOVE that photo. LOVE it.

  12. Chris Vartorella says:

    I still read this… amazing.. but the picture says it all….