Alex’s Wishes.

29 Jan

Alex is back at school today. We had a good meeting with his principal to discuss safety, Asperger’s, and helping him and she had a brilliant idea. She is going to talk to his teachers about changing his school schedule, not because of what happened on Tuesday, but to give him more space and attention, so his sensory stuff won’t be the focus, and he can flourish…. He seemed a little better today, I sent him off with his qcharm bracelet (will blog more later, it’s pretty cool) and hugs, and I printed out a social story on bullies. School apparently thinks this is an isolated event. I hope they are correct. They thought the boys were just playing rough. I mentioned the foot prints on Alex, and we had a good discussion about playgrounds, bullies, and kids who can’t understand intent.

I have been meaning to share this with all of you… This is a note Alex wrote to his Dad when his Dad was up in Boston in November, visiting his dad/Alex’s Grampy (he has lymphoma, but at that point he was in ICU barely holding on, so we got hubby up there as quick as possible to help his family and be with his dad)…

Alex may not understand people’s intent. And he is not so good at reading facial expressions, subtext, that sort of thing. He is very black and white, not a smidgen of gray area.

He does understand: Happy and Not Happy.

He wants us to be happy. We do our best to make sure he knows that any tears, any anger, and crankiness is not because of him and we try to show him and tell him that we love him and that he belongs here with us, in our family, and that we are a team. He knows we love him and that won’t go away.

But he does know when we aren’t happy. It’s a reminder of how kids read the undercurrent of emotion in a household, in a family, between parents. If my kid, who has difficulty with social communication, can sense this and simplify it so that it means something to him, how are (for lack of a better term) neurotypical kids understanding what our families go through all the time, but especially now in this time of great strain in our world- how are they perceiving family security, relationships, economic hardship, violence anywhere? I half watch the news every night and if I had to sum it up in Alex’s terms I’d say “not happy” would be the state of the world… Hope is everywhere, change is upon us, but change is difficult on everypart of our bodies, our minds, our families… It takes time. But as a point in time I’d have to say “not happy” seems to be everywhere… The principal mentioned that everything- the general vibe, the volume, the attitude- has changed at school. She thinks the kids are feeling the changes in their homes, the worries, the strife. I believe that.

Anyway, Alex knew Grampy was very sick, so every night we blew wishes (kisses, but he tends to hear things a little off…like playing operator) and they flew up to the ceiling, got caught in the current of the ceiling fan and flew to the door…I’d open the door and out they would fly to the universe to make the universe happy so it could help Grampy. Pretty fantastical and abstract, but there are a few things he takes, in his rule based world, as fact. Blowing wishes and holding them and letting them go when someone needs the help of “best wishes” is fact, it’s real. And it is soul soothing for both of us.

Alex wrote this note to his Dad. He announced he was going to write his “rules for Daddy”…

Here they are:

Alex's Rules for Daddy.

Alex's Rules for Daddy.

Yesterday, when we returned from school and the post-meeting trip to Target (out of printer ink and diet dr. pepper…yes I admit it. I can’t function without the stuff and I don’t drink coffee and some days tea does not cut it as much as I love love love tea), he wanted to use my little stapler that had been relocated from the fridge (magnetic everything!) to my nightstand as I had been in bed organizing his papers earlier in the day. So I sent him to get paper and he came back with his little notebook (that I forgot he had…he has a big guy journal he writes in on occasion, but this one has been around since he was a baby…it was his blues clues notebook for a while, but we kept forgetting it) and showed me that he wanted to staple the letter he wrote. He managed to get two staples into the sheet and still wouldn’t listen that staples are connectors/fasteners so I decided to give him a visual demonstration and I asked him for the paper.

While Jeff and I were in the kitchen talking, when he was hanging out in his room listening to his Ode to Joy CD, after the playground thing, he wrote this in his notebook:

Letter to Mama and Daddy

Letter to Mama and Daddy

“They were not being happy. Please be happy. xo Alex”

It doesn’t seem to register to him that it is ok to be unhappy. I have tried, and will continue to try, to instill in him that a negative emotion is a sign that something needs to change- something major or something minor- that it’s a sign (I call it a green light) to figure out what and why something is making one not smile and a point from which to make things different and better. Sounds more complicated than it is…Basically, I’m giving him the tools to break things down so he can understand them better- the tools to see the colors that make up the big picture. Again, sounds more complicated than it is. We have seen moments of it working, one of the techniques is writing or drawing…

This was what he wrote… We are worrying about him and he is worrying about us.

So we are breaking it down further, and we do need to find a better way to help him understand that he makes us happy, but that’s not his job and that he brings us great joy, but he isn’t responsible for bringing us joy.

I guess I just don’t want him to feel like he has ever failed us. I don’t want him to waste his time feeling responsible for our happiness, I rode that treadmill for over 30 years until I finally realized I had to get off or I would lose what was left of me, I don’t want him to ever feel that…. I’m digesting the shame and confusion he has felt since the incident on Tuesday and it is paralyzing (and dehydrating). I asked him about the playground and the kids and their faces and their words and he blushed. He was embarrassed about it. I have never seen his cheeks rosy other than from exercise.

Unfortunately, his take on this is that the kids were happy they were hurting him.

But he knows he is sweet and smart and funny and kind and cute. He cannot connect why they hurt him to anything and takes it as fact, like just being happy to hurt him makes it an acceptable reason.

His teacher said this morning that she didn’t know it had been that bad on the playground as he sat and had lunch and didn’t cry or say much of anything. Then again, she doesn’t know the shell he disappears into as well as we do. Perhaps now the lines of communication and the potential for education will be wide open…

Hubby just left to go observe playground time…

Fingers and everything else crossed…

xo

Bek

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4 Responses to “Alex’s Wishes.”

  1. carly January 29, 2009 at 11:48 pm #

    hi =) i stumbled upon your jewelry on etsy, and absolutely LOVED it! since i like to get to know a bit about the artist behind the work, i clicked the link to your blog… it’s great! and it was funny to find that you have the ‘betes too! (type 1 since 1996 here).

    i am gonna ask for one of your necklaces for my bday! hooray

  2. carrie January 30, 2009 at 8:15 am #

    good luck alex….. i’m on your side:)

  3. Andrew January 30, 2009 at 2:10 pm #

    I don’t know how parents do it. Hang in there, Bek family.

  4. Candace January 31, 2009 at 8:43 am #

    Thank you so much for sharing this story. It is so touching, powerful, and brave. I’m sending good wishes your way. =)

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