Saturday, January 01, 2011

What my son taught me about SPD

Yesterday was a hard day for Sumner.

We went to a Japanese steakhouse for my little sister's birthday. Sumner started worrying as soon as he heard where we were going, and his big concern was that they were going to "make a fireplace" on the table. (This is part of the cooking/show of the meal.) He kept telling me "Mommy, it is too bright! I am so scared of it! What will I do? Can we go to another restaurant? Please?"

We talked about what we might do ahead of time to plan and prepare: sunglasses, covering his face, wearing a weight belt...

He decided to wear his new Iron Man helmet that Santa brought to help protect him from the "fireplace." He was anxious in the car the whole way there, and he was hesitant to even sit at the table. He started whining/fussing as soon as we sat down. Unfortunately they seated us between two tables, both preparing to start the lunch "show."

In the end, I covered his eyes and face with my hand. After the first fire, he became desperate to cover his face through the second fire. (Delayed by a few minutes.) His senses were clearly heightened and after the meal, he wanted to go around the table to talk to family, but told me he was "afraid of the fans" (vents in the ceiling) and had to hold my hand to go around the table.

Outside in the lobby we had cake. As the singing began, Sumner refused to sing, and when it concluded, the meltdown began. Both David and I took turns taking him outside, and I even tried jumping with him and letting him push the wall. He was too far gone for it to help.

I took him in the bathroom, and he looked up at me with huge sad eyes and said "Mama, this place scares me. I am so scared."

My heart broke into a million pieces right there. I cannot fathom how the entire meal felt to him: how overwhelmed he was, how his body went on hyper alert, and how his SPD felt. We left, and he struggled the remainder of the day, and most of today too, but for one minute I saw in his eyes everything: that he was completely overwhelmed and didn't know what to do to make it stop.

The story is awful, and just a snapshot at what both of the boys must deal with every day. There were bright spots here too that I can't ignore: we planned ahead. He was able to tell me what he was afraid of. He really did well considering. But for a moment I wished I could scoop him up and put him in a cave where there was no sensory input and let him hide. The thing is, I know that won't do him any good. This day is just the tip of the iceberg as to what he'll face every day, and running away from sensory things won't help.

Sumner's sensory over-responsiveness is not always a bad thing. He is an amazing singer and always sings on pitch. He notices things that no one else would. The world is very beautiful through his eyes, and he frequently says things that make me stop and see things in a different way. I just have to keep thinking of ways to give him every tool in my arsenal to help him prepare for things that will overwhelm him, and deal with the unexpected.

I planned to do a year in review picture post today, but this has been weighing heavily on my mind. I'll post it tomorrow.


Adoption of Jane said...

oh Bless is heart. That must have been really painful for you too! Have you ever heard Stephen Shore, Ed.D speak? He is amazing! He talks a lot about SPD issues. He is an adult male on the spectrum. If he is ever in your area I highly recommend listening to him speak. In a Seminar I saw him at he said shaving felt like a Power Sander going across his face. Here is his link:

Liz said...

It breaks my heart just reading this. I think you are right though, keeping him out of situations like those isn't going to help anything either. I'm so sorry. I want to just give him a big hug.

aimee and ben said...

heart-wrenching. I am so sorry.

Even with the utmost preparation (and Sumner doing AWESOME at telling you his feelings!), sometimes it just doesn't work. I feel your pain- have been there, and will be there again. You are a great mommy and you and Sumner will continue to figure this out together- one day/hour/meal/Iron Man helmet at a time.

Kara said...

That breaks my heart. Brecken's SPD isn't nearly as severe as your boys', but I'm really connecting to a lot of things you write about. Before his diagnosis, I'd get so frustrated that he'd freak out about things. And now since his diagnosis, I feel HORRIBLE for ever being frustrated. It wasn't his fault he'd have a meltdown at loud events. Or that he'd be afraid of things that I couldn't figure out why he'd be afraid of them. So many things make sense to me now, and I see a lot of the same behaviors in him as in your sons. Thank you for writing all this- it really hits home with me!

(jkls from the board)

Christina said...

We caught and started treating Abby's SPD when she was around a year old. Once I finally understood it, I used to feel so bad for her when she couldn't talk to me, and couldn't explain to me what it was that was bothering her. It was hard to explain to other people that she wasn't just "crying for no reason" she was upset about something...
I'm so sorry this happened, but I can't wait until Abby can talk to me and tell me how she feels. Tell me it's to bright, to loud, tell me she wants to stay home, to go for a walk...I can't wait until she can communicate MORE with me, so I can be a better helper to her. I do my best, but damn there are days when I just don't get it, meaning I don't get what she needs, or what is making her so upset. STILL.

Cari said...

So sad for the poor guy :( He's got a great ability to communicate his needs and what is wrong.

tbonegrl said...

Thanks everyone.

The biggest struggle is this: we cannot, nor do I want to, avoid things like this. I am a teacher. I know what school is like: gym, and noisy lunchrooms, recess, and kids bumping into you, fire alarms, and announcements.

It is so hard to balance trying to shelter/protect him with helping him deal, KWIM?

Souza Sisters said...

I am just catching up on your blog. My heart broke reading this post. Poor Summy :( but on the other hand he sounds like an amazing little guy!! And you are an amazing mom!!