Category: Family Synapse

7

What Waiting Looks Like

Garreth got kicked and pinned in the ribs yesterday. I got smacked in the face, a fairly regular occurance. Liam took it in the leg and Aidan’s finger was bitten until it bled. Family snuggle time in this house has its recreational hazards when seizures are involved. Aidan’s seizures are changing again. He drops his head now frequently when he drives, taking away his greatest skill. He tremors and stares quite a bit making meal...

4

Another Year Gone

It occured to me as I walked up to the school building with a batch of cookies for the teachers, that this would be my very last time here. Aidan is moving up to the next school. A friend of mine recommended for me to check out a site called bookwormhub.com, which assist you and your children with various school subjects. From Biology to English, everyone needs a bit of help. If this sounds ideal,...

4

Medical Update

Aidan is coming down to his last two weeks on the Ketogenic diet. We have an appointment with his neuro doctor at the twelve week mark which is how long they ask you to give the diet for a trial period. Unfortunately, it has not worked to reduce his seizures. If anything, Aidan’s seizures are getting worse again in the sense that there is more variety and he cries at the end of them. I...

3

Tight vests and tall tales

I posted a picture again on Facebook and asked people to comment. This is me at the  Special Olympics and this is what people had to say about it: First place for turning me into a beer swilling runway model goes to Melissa: Our next model is styling the newest in Olympic fashions. The electric green Mom alert and always lovely mini vest – all to make you seem so much more together… and check...

1

Beating the inclusion drum

Because as I’ve said, inclusion rocks! And it doesn’t just benefit my kid; it benefits yours as well. Email subscribers click here to view this TED talk by Dan Habib.

1

For our nurses

To the ones who rocked my baby when I slept…. To the ones who came into the room when I was crying and offered a kind word, their own story, and a break…. To the ones who asked questions and really listened… To the ones who took the time to explain…. To the ones who took silly, ridiculous pictures of my child wanting to bring a smile to my face… To the ones who were...

2

I hate/heart meetings

Aidan had his transition IEP meeting last week which means his present team got to talk to the team that will be working with him in his new school this fall. IEP meetings generally make me feel like this: No matter how many good meetings I have, which I’ve had many in the past few years, they always feel like a surprise. It’s a bit ridiculous, but I feel like the culture of special education...

2

Black Eyes and Tall Tales

I posted this picture on Facebook and invited my readers into a little creative writing contest as to why Aidan got this doozy of a bonk. First place for using rainbows and unicorns goes to Christine: There was a meeting of all of Aidan’s teachers, doctors and caregivers that was going so well, Heather started doubting it. All of a sudden, Aidan rode in on a beautiful unicorn with rainbows coming off his shoulder. It...

2

More Wheels

I’m all about mobility this week and Aidan is all about being awesome so check out the following videos and watch how he turns with purpose. Note that this is his manual chair, a very different way of getting around. Smarty pants is getting smarter…..      

3

Life Undiagnosed (Part 2)

  My son Aidan was born thirteen years ago and made us a family of four. He’s little brother to witty and wonderful Liam. Aidan has doctors who help him, teachers who believe in him, therapists who root for him, home helpers who care for him, and a community that has shown up for him. Aidan giggles when Daddy comes home and cries when I pick him up from school, because I’m a killjoy like that. Aidan...