When a School Rocks

SchoolRocksBy SB_FASD

They cheered each other as each new car arrived with another student.  They were wearing their production hoodies and shirts and school uniforms.  They were buzzing with positive energy – ready for their third performance of the day.  Not nervous, buoyed.  Several kids were introducing our son to their parents.  Some of his new friends broke into huge smiles when they saw us and one gave me a big hug.  The spirit was high.  I was expecting nerves, uncertainties.  But instead this place was alight with confidence and a sense of fun and accomplishment.  These kids were in a good place.  Soon they would be onstage, but in these early moments before the curtain was raised, they were already a team.

Our family has extensive experience with theatre.  The lead up to this night was every bit as intensive a schedule as for a semi-professional or major amateur theatre group.  Before they got to this place, hours of expert direction and guidance took place.  Even before they started rehearsals, these kids were being prepared for their moment.  And that is the thing that brings me to tears every time I think about, sappy soul that I am (or that I am becoming).  The whole school experience for these kids makes nights like this possible.

I don’t know all of their stories, I just know our son’s story.

Our son has always loved music, performing. He’s kind of awesome at it.  He’s now in Year 8.  He attended mainstream school until last November.  In his school’s end of year production in Year 6, he was given I think three words to say, and was placed behind a taller child where no one could see him.  In Year 7 at the secondary school, he eagerly attended the rehearsals for Oliver (he knows every word of the songs) but he had to drop out because the school was not set up to support him through the rehearsals and he was getting into trouble.  Only a few months after he was close to rock bottom having nearly been crushed by the pressures of his old mainstream school, here in this specialist environment, with this team of educators who understand his needs (he has a diagnosis of Foetal Alcohol Syndrome) and have the resources to support him, not only was he onstage but he was in a main role, with more lines than I thought he could manage, and singing his heart out.  And his teacher was literally #intheband!

And as I watched this theatre full of amazing students I was multiplying in my mind his story by her story by their stories, and the full impact of what was happening left me humbled.

THIS IS HOW IT SHOULD BE FOR EVERY CHILD, EVERYWHERE.

There they were, these brave, hard working kids, singing their truth:

I’ve got so much to say,
If only you would listen.
I’ve tried ev’ry which way,
And still you never listen.
Can’t you see I’m hurting?
I couldn’t be more clear.
But I promise,
One day I’ll make you hear.

You know I try, try, try to explain–
I’m not the kid you want me to be.
And yet it’s all, it’s all in vain–
You just don’t want to see the real me.
You think you know what I’m all about–
And yet you just keep shutting me out!

I’ve got so much to share,
If only you would listen.
You could prove that you care,
If only you would listen.
I’m not gonna beg you–
You’ll never see a tear.
But I promise, one day, I’ll make you hear.
(Lyrics, from If Only You Would Listen)

We had a young friend with us, a child who attends our son’s old school.  She said she wished could go to this school too.  She didn’t see anything other than a cool school, with students who were having a great experience.

We were told by the head teacher that while any school should be happy to have a student like our son, this place is perfect for him because he is so very comfortable being who he is.  I wrote about this in the last post, but I just can’t say enough how life-changing it is as a parent to know that your child is in a place that welcomes him, appreciates him, and wants him to be there.

Those words hold power.

They hold the power to change trajectories, to forge positive futures.

I am not saying this performance was smooth throughout.  There were microphones that didn’t work, lines that took prompting.  But what I loved most of all was imagining our son one day being like the lead actor – a talented young man who captivated us all last night – helping another young student like our son remember his lines some day.

More than the cheering each other upon arrival (which was truly awesome), I was deeply, deeply impressed by the way these students guided each other.

That is what this school is teaching.

And there they were!  Some kids for whom even standing up in front of a room full of 120+ people would be a potentially crippling thought…some students who in other places would be mocked or sidelined or silenced – shoved to the back of the room, put into a side room or perhaps even excluded at times…some young adults who have overcome more than most of us will ever have to face…there they were.  Shining.

During the curtain call, when the cast and crew were all onstage dancing and laughing and giving themselves high fives, we saw our son for the first time with his tribe.  These kids weren’t patronizing him, these kids weren’t including him because they were told to, these kids were standing by him, with him.  Together, they made us hear.

AND, they had a confetti cannon.  You have no idea how much it means to our son to be on a stage with a confetti cannon, hearing the applause.

This school rocks.

(Now, how do we make it so every school can rock too?)

Calming Down by Melting Cheese & Getting Outside

We love a child with #FASDBy @FASD_Mum

We have been trying to work on ways to help our 12-year-old son with FASD to release tension. As the pressures build with the end of the summer and the beginning of school coming, he has been finding it really hard lately.

A specialist reminded us of the progressive muscle relaxation technique – tensing muscles and then releasing the tension.  He gave the example of holding hands out – pretending to squeeze lemons and then releasing them or pretending to be a turtle, squeezing your shoulders up to put your head in your shell and then relaxing them.

Recently, during an out of control moment, I surprised our son and redirected him by introducing this idea again and giving him some additional physical input.  It started by making a pillow sandwich on his bed with lots of pillows – then we gave it a twist by telling him he was melted cheese.  By the time we were done he was giggling and thinking of different foods that start off hard and then become soft.  As he was acting this out, I was encouraging him to tense his muscle groups and then massaging them and helping him to release the tension…it was surprisingly fun and certainly better than the full on aggressive meltdown he had been having before we started ‘playing’.

It’s important to remember that kids with FASD can have an emotional age about half their physical age, so while it may seem ‘childish’ to do this even with a pre-teen or teen, they might really enjoy the time to be silly (and it can have a very positive effect).  Our son is a bit obsessed with cheese so that was a main focus, but you can choose your food…

  • Pretend you are the cheese on a ham and cheese toastie. The cheese starts off solid (tense all muscles) and then melts (relax all muscles).
  • Pretend you are a piece of spaghetti – stiff and straight until you go into the pan, and then you go all loose and squiggly and get curled up onto the fork.
  • Pretend you are a sausage in the pan, all straight and solid. Sizzle as you cook and then pop!
  • Pretend you are the ingredients for ice cream – we stir you up (head to toe quick shaking). Then you go frozen solid.  We take you out of the refrigerator, and then you start to melt.
  • Pretend you are the cheese on pizza as it cooks – starts off solid and then gets all loose and melts everywhere.
  • Pretend you are the cheese in a burrito – wrap up in a blanket, tense, and then pretend you are cheese melting.

That is how we improvised it – but here are some tips from some professionals:

Relaxation script for kids

How to do progressive muscle relaxation, AnxietyBC

Progressive Muscle Relaxation for Children, A.S. Koeppen

It’s also great for caregivers too:  Progressive muscle relaxation exercise for caregivers

To do the technique properly, you are supposed to do it in this order: Stress Management: Doing Progressive Muscle Relaxation

And here is why it works:

“This process of relaxation is guaranteed to happen because it is based on a principle of muscle physiology. Whenever you create tension in a muscle and then release the tension the muscle has to relax. The muscle does not have a choice. It must happen. The interesting aspect of this process is that the muscle will not only quickly relax back to its pre-tensed state, but if it is allowed to rest, will become even more relaxed that it was. As this procedure of creating tension and then releasing it is applied to every major muscle group of the body, all of these muscles will become more relaxed than when you started.

“The key to triggering the relaxation response in this manner is to take charge of the voluntary muscles by tensing them and forcing them into a state of relaxation. Once the muscles relax then the other components of the relaxation response will naturally follow. Relaxed muscles require less oxygen so the breathing pattern slows and deepens. The heart does not need to be beating so fast to carry oxygen out to tense muscles. Heart rate and blood pressure decline. The normal blood flow returns to the belly and digestion resumes. The belly is calmed. Hands and feet warm up. Such a series of bodily adaptations all start and fall naturally into place because the voluntary muscles are being directed into a state of relaxation. Soon changes in mood follow, and you become more calm and refreshed.”

We also are teaching our guy to take some ownership for figuring out his needs, and helping with strategies when he starts to feel unhappy.

You may have seen the earlier post, SuperT: How to go from angry to happy, which includes a video he made advising other kids, and where used we emojis as aides.

Recently he made two more videos – encouraging kids to go outside if they are having a bad day.

We are improvising as we go along.  Sometimes it’s easy to forget that we adults have a role in teaching techniques that will help our kids get through these moments.  Sometimes around here we find the days so pressured that we take short-cuts, we feel the weight of it all so heavily that we forget that having fun is also therapeutic.

SuperT – How to Go From Angry to Happy

We love a child with #FASD-6

By FASD_Mum and SuperT

We have been given advice by a professional to help give our son more ownership over decisions on how to regulate himself and how to get through the day.  We have chosen to use emojis as a prop for this.  We are using them to help him identify his feelings, and then to agree to things he can do when he is feeling a certain way.

Today, we worked on how to go from angry to happy.  Here he is, in his own words:

We sat together and discussed the many emojis on his new duvet cover and his new pillows.

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Then we talked about the two he called “Most Angry” and “Angry” and what he could do to get back to happy when he feels this way.  This way, he has some initial buy-in when things start to get challenging.  This is not to say the process of getting from angry to happy is immediate – far from it.  But we are able to show we are on the same side in those moments sliding into dysregulation.

Tonight, as things started to fly I was able to say, “I see you are angry.  Remember we have a plan? Remember our list?  What’s first on the list….”  Within 10 minutes I was able to walk him upstairs and into his calm spot, where he then re-watched his video above.

Things calmed down.  It was a win.

It’s not perfect.  We’re rookies.  But it’s a start.

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