Dream and You Will See - The Dream Tree Shakers

I know
Trees will grow
And you will climb them all
Someday
Postcards
From afar
Will float and fly into your arms

You need not be afraid
Of dark and stormy days
Weather will change its’ ways
Dream and you will see

Falling stars
Are wishes with regards
Shine
Let the clouds
Comfort and surround
And roll peacefully along

The above lyrics are from a fantastic Chicago-based children's band, The Dream Tree Shakers.

Put Your Hand in the Hand...

I can't believe it's been nearly 2 years since my son's diagnosis. In some ways it's been the longest 2 years of my life and in other ways, if feels like it was just yesterday.

We're beginning the process of prepping him for school. Real school. The big brick building down the street where hundreds of kids go? The place where he'll spend 1330 hours a year in? Yes, that place. He currently attends the most amazing preschool ever along with his NT twin. These people are miracle workers, I swear. Anyway, each day I get a full report from his sister on what they ate, what songs they sang, who they sat next to during music time and a summary of the book the teacher read that day. Great, right? Just what every parent of a non verbal child wants - a full report! Well this week it dawned on me that they won't be in the same class next year. Heck, they likely won't be in the same school. How will I know what my son does all day? How will I know if he did something new or if he sat still or if he played with a toy in a purposeful manner? How will I know if he's being challenged or if he's being ignored? How will I know if he's sad?

I was thinking about this when we were taking the kids to their swimming lesson this morning. I was feeling tense and was so filled with worry when we pulled into the parking lot. We all got out of the car, my husband walked towards the building with our daughter and I was with our son. I usually carry him in parking lots (he's a major flight risk) but this morning I plunked him down, at the ready to scoop him up. Instead of bolting, he took my hand. HE.TOOK.MY.HAND. So mother and son walked towards the building, hand in hand, just like that. I have tried on countless occasions to get him to hold my hand. I've longed to feel his soft little hand in my mine, trusting me to guide him the right way. It's the best feeling in the world. I beamed with so much happiness and pride that the school stuff doesn't seem so stressful anymore.

It will work out, it may be difficult, but we'll make it work. We have to and we will. And it will be ok.

Articles of Interest + Mito + Misc update

We've been busy having a super fun summer which hasn't left much time to post here. I want to remind you that I keep a list of current research articles on the right-hand side of this blog. You should check them out if you're looking for more info on where the science is at with creatine deficiency syndromes. Also the UMDF (United Mitochondrial Disease Foundation) will soon have a page dedicated to creatine deficiencies, specifically creatine transporter deficiency as it presents as a mito disease. Click here to find out more about Mitochondrial diseases.

My son has a couple new words but seems to get stuck on the new ones, sort of like how a song gets stuck on a scratched record. The latest is "all done" (sounds like "ah doon") and I was so excited by this that I clapped and cheered everytime he said it. If he knew what he meant, I doubt he does now. My enthusiasm led him to say this for everything: finishing his food, wanting to move on to another activity, wanting out of the wagon, wanting to be picked up, wanting to be put down, wanting a drink, wanting more food, not wanting his dog near him, wanting to wear a hat, etc..

So now we're stepping away from the verbal and focusing more on the sustaining joint attention and using gestures. I'd like for him to have a good foundation of non-verbal communication before we move on to the verbal. I don't really see the latter happening without it.

"Life doesn't have to be perfect to be wonderful"

I met Joe and his father in the waiting room at the rehab clinic for my son’s weekly physio appointment. My son was crawling all around the waiting room (I gave up on germ management a long time ago) and eventually went up to them, flashed his beaming smile, and broke the ice for conversation.

Joe is 14 years old with global developmental delay. He walks, says a handful of words and seems to be a happy teenager. Joe's dad (never got his name) looked tired, drained and worn out. You could say he was having one of those down days that all of us parents of kids with special needs have from time to time. He commented on the unfairness of it all, how most kids grow up, go to school, leave home, get a job, maybe get married and have kids of their own. He's a single dad who works hard to provide for his family and the strain of worrying about the future was written all over his face. Joe's mother split when Joe was a child, she couldn't handle it. Despite all this, Joe's father claims that it takes special people to raise a child with special needs. I don't believe that.

Of the babies born into this world, some have special needs and some do not. They don’t discriminate. To say that only special people are given special babies rubs me the wrong way because it’s not true. Regular, ordinary people are given special babies -some of them might have four degrees, some one, others none, some have jobs and some don’t work at all. In my opinion, having a special needs child comes down to this: sink or swim. I guess in Joe’s case, his mother sank but his father swims on.

If life were that simple then abusers wouldn't be able to procreate, families wouldn't experience the devastation of perinatal and infant loss and people wouldn't have to experience the pains of infertility. It's often easier to feel that we were "chosen" for this role when, really, we know that it's not true, life can simply be unfair without any explanation at all. Sink or swim, it's up to you.

Life sometimes doesn't work out the way we want it to and that's okay, we just need to keep our heads above water to enjoy what's right in front of us. "Life doesn't have to be perfect to be wonderful" - Annette Funicello.

MacAthur-Bates

Is anyone familiar with the MacArthur-Bates CDI Words and Gestures booklet?

The booklet contains a mountain of questions around the understanding of language and the imitation of words. It asks whether your child can understand things like "are you hungry?" "come here" don't touch" and my personal favourite: "time to go night night". It also goes through a vocabulary checklist and you're meant to indicate whether your child understands a particular word or if he understands & can say the word. Same for pronouns, prepositions, quantifiers etc.. Our son is meant to repeat this test in 6 months to monitor any improvement. It will be interesting to see if the supplements help boost his score.

Our developmental pediatrician asked us to complete it about two months ago but we haven't done anything with it yet. Every time I open it, I feel anxious and a little nauseous so I close it and ignore it for another little while. I guess, in a sense, we don't need to complete it because out of all the items listed (at least 150)we can't check off a single one! Still, he does understand some things that just don't happen to be in that godforsaken booklet. I'm pretty sure he understands "snack" "drink your milk" "blueberries" "no" and "up".

According to MacArthur-Bates, "before children begin to speak, they show signs of understanding language by responding to familiar words and phrases". Looks like we have a long road ahead of us but my sleeves are rolled up and I'm ready to give it my all.