Seeking support and solutions

We were secretly blessed with the birth of Sweet Baboo. He was completely different, right from the start, than First Born Experiment. For one, he was a boy. His birth was fast and he was big: 2 hours, almost 10 lbs. I’m 5’2”.

Sweet Baboo was a very content baby. He was a healthy sleeper, taking long 4 hour naps in the day. He got into a night sleep pattern pretty well; my daughter didn’t sleep through the night til she was almost two years old. (and by this I mean less than 3 wake-ups a night). He was content, he ate well, he was self-satisfied; there was no constant crying, demands, or discomfort.

My daughter never really met all of her milestones on target.  As everything I read about development was measured against this, I panicked. Only much later did I realize that there is a range of ages and dates as to when kids have their “firsts.” My son, therefore, I was slightly less worried about.

Sweet Baboo’s temperament made his choices easy: he didn’t like being on his stomach, and he wasn’t much for textures or stimulus. He didn’t like the feel of grass on his body. He was more content to be held and watch clouds go by.  At four months he hit his first milestone: rolling over. He screamed at the sudden unexpected movement. He’d temporarily lost control and didn’t like it. He never rolled over again.

I tried to encourage movement, but it was unpleasant and caused him to fuss and cry. Why keep torturing a kid that would  eventually learn what he needed to know? But as weeks went by he became even less interested in movement. If a toy was just out of reach, he would simply leave it there and look at it. No crying, no fussing and definitely no attempts at trying to reach it.

I was concerned, my husband much less so. Things did not seem so normal to me, and I knew that one stage of development segues into another. You can learn to walk if you don’t crawl, but it’s much harder as you have no pathways developed  in your brain that tell you to alternate your legs. It’s a process, made easier by steps and stages.

It worried me enough that I finally asked the public health nurse to do a general assessment. We were given a referral to a physiotherapist and a pediatrician.

We started seeing the physiotherapist when S.B. was almost 8 months. His fine motor skills were very developed, but his gross motor skills (needed for walking and movement) were struggling. He could pick up tiny feathers and bits of dirt off the ground, but could not roll over. He could gently thread a string through Cheerios, but could not even get into the position to try to crawl.

We saw the physiotherapist for almost a year and half, usually two or three times a month. There were appointments and exercises to practice at home. We tried to strengthen his hips by putting a band around his thighs when he tried to crawl. I had to practice rolling him a few times a day, putting him in a very foul mood. I was to play games with him to mimic movements that would use his body equally. It was work, for both of us. Progress was slow. He eventually managed to scoot around on his bum at high speeds, so while mobile to an extent, he was not developing the easiest pathways possible for future stages.

The physiotherapist visit also coincided with a visit to a pediatrician. The pediatrician was older and seemed to have a very definite idea of how a child should behave and respond at every stage. He did a general screening and recommended more tests. He recommended blood tests: painful for a child with soft arms that held deep veins. It took three nurses and almost 45 minutes to get a tiny needle into him to draw a few vials. He measured his head (which was large) and the space between his eyes (which was wider than average). He said he might be autistic.  He recommended we see a geneticist.

The pediatrician phoned with the results of the blood test. We were not home so he left a voice-mail. S.B.’s CGG trinucleotide repeat was high enough to consider him to have Fragile-X. Fragile-X was a form of autism.

I did what every scared parent does: I did research. I looked at the physical similarities between S.B. and kids with Fragile-X. I looked at behavioral habits. I looked at personality characteristics. The one point that stuck out for me is that Fragile-X kids love water; S.B. was not fond of water.

We scheduled an appointment to see a geneticist. There was a 6 month waiting list.  She talked to us and watched S.B. interact with us and agreed when we said he was a generally happy and alert and emotionally connected child. She said he had a lot of markers of some conditions, but when you want to give a diagnosis he did not have enough of any of them. I mentioned what the pediatrician had said. She looked over her notes and re-read them to me. The pediatrician had mistakenly said that his allele counts were high, when in fact they were not high enough. The pediatrician had misinformed us on a potentially life-altering course for our family.

I strongly believe that when going through the medical or alternative/holistic system you must have some kind of affinity or  rapport with your caregiver. If you cannot subscribe to what the person is saying, or who they are as a professional, you will likely not be able to get the care you need. If the person is really good at what they do and you like them for that, chances are your results will be positive.  I wasn’t too fond of the pediatrician at the first handshake.

Doing errands and getting around with Sweet Baboo was especially challenging because I always had to factor in how I would accommodate moving him. Imagine having a kid that all this time you cannot actually put down because he can’t stand up on his own; he was over 14 months old now. You can’t just put your kid down in a parking lot in the pouring rain while you get ready with the stroller or load the groceries. It was frustrating and I felt like we would be in these transition stages forever. Then, at 22 months, S.B. took his first steps.

We were thrilled that after all this time he’d made incredible progress and was brave enough to take some steps. And it was bravery, because along with the look of wonder on his face at having independently moved one foot, was also the look of terror. The same one I’d seen when he first rolled over at 4 months old.

We continued physiotherapy until S.B. could go up and down stairs holding a ball (not holding the railing), and alternating feet. He developed a very strong throwing arm, which actually scared the physiotherapist when he aimed a bit high one day and aimed in her direction. Those were his fine motor skills in action.

Today S.B. is in Grade 1 in French immersion. He has grown and caught up to his peers. He now runs very naturally and, while he has quirks and obsessions that we’ve had to work around and that have plagued our patience, his teacher said he is a leader in his class and is definitely one of the brighter kids. He does extra work to keep busy while the rest of the class practices printing or using scissors. He prefers math books to comic books and even before starting kindergarten has always enjoyed borrowing his sister’s homework to copy the letters.

Each child has a journey that they go on and we follow. We can’t change that journey, we can only support and provide what assistance we can. Sometimes the issues get easier, or we learn ways to make things more tolerable. We can wish we had perfectly predictable children, that there were no mysteries. But sometimes those mysteries lead us on our own journey and together we find a world that we can share. We are a little prouder of our small people because they have already come so far on their own.

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About iRuniBreathe

When I have my way with you, I have words.

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