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How I Learned to Set Different Benchmarks for My Son

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Learning your baby suffered a brain injury is a devastating and confusing experience. When we got the results of Joshua’s MRI, we were told that though it was possible for some children to “beat the odds” and have no lasting problems following a brain injury, they didn’t expect that for Joshua. We questioned them about what sort of deficits we might see — would he have a physical disability? A learning disability? The doctors told us it was impossible to know. We would just have to wait and see how he developed.

I told myself Joshua was going to be fine. Of course he would be one of those children who beat the odds and go on to have no problems. Of course.

Once I started Googling “Hypoxic Ischemic Encephalopathy,” I found the blog of a parent whose daughter had the same thing. She ended up fully recovering. How amazing it was see it was indeed possible for this to happen!

Until Joshua was 6 weeks old, I lived in blissful ignorance that everything was going fine. I thought Joshua was just like any other baby despite his traumatic start. But after I took him to his 6-week check up with the general practitioner, things slowly started to unravel. She was concerned because his head hadn’t grown much and his coronal sutures were prominent. Instantly, I began to worry. When we followed up with a pediatrician the following week, she was reassuring, so I felt better again. But this was the beginning of the obsessive measuring of Joshua’s head circumference. I cannot even describe how much I willed his head to grow, how much I worried about what his head size might mean for him in the future and the frustration I felt watching his head circumference slide down the percentile chart.

When Joshua was 12 weeks old, his pediatrician diagnosed him with hypertonia. High muscle tone. I was annoyed; there was nothing wrong with him. He was making his muscles tight on purpose, resisting when people tried to move his limbs. Right? At this same appointment, Joshua’s head circumference was on the 5th percentile, and I was again given hope that it may stay there and continue tracking on that curve. It did not. By the time he was 4 months old, his head circumference had dropped below the 0 percent line. I still measured it often throughout his first year, wishing it would grow.

Joshua was referred to physiotherapy and had two appointments with the hospital physiotherapist before he was referred to Early Intervention. At the hospital, they told me they’d seen typical babies with muscle tone like Joshua’s who had outgrown it. It would become clearer around 10 months or so. Again, hope. Everything can still be OK even with this little hurdle.

Joshua was 5 months old when he had his intake appointment in Early Intervention. At that time, he was not considered to be developmentally delayed. There’s a fair range of normal when it comes to meeting developmental milestones and, although most babies his age were doing more than he was, he wasn’t yet outside of the normal range for meeting the expected milestones. They were concerned that his patterns of movement were not normal and that he was having motor difficulties due to his muscle tone, but he was not delayed. He could hold his head up. He could smile. He could roll from his back to his tummy. He could reach for toys. He was doing OK. There was still hope that everything would be fine.

Once Joshua started Early Intervention, his development was monitored regularly using the Ages and Stages Questionnaire. So began the fixation on his development. All these things he was supposed to be doing. All these things he wasn’t doing. What was expected of him increased over the next few months, but Joshua’s abilities didn’t match the expectation. I downloaded the ASQ and studied it to find out what he should be doing and what I should work on with him. When he couldn’t do things, it filled me with dread. It wasn’t supposed to be that way. Joshua was supposed to make a full recovery.

By the time he was 8 months old, Joshua was delayed in both fine and gross motor skills. He wasn’t sitting up or crawling, and he wasn’t rolling both ways. He had an obvious preference for one side of his body, which was first noted when he was 12 weeks old, and it hadn’t gone away. I’d started reading about cerebral palsy, and I knew that the issues Joshua was facing were consistent with it. The abnormal muscle tone. The preference for one side of the body. The motor delays. My dream of him making a full recovery was slowly slipping away.

Although it’s not a good idea, it’s hard not to compare your child. I would look at typical children, see what they could do and want more than anything for my child to be able to do that, too. Everyone has their benchmarks by which they measure their child’s growth.

The little girl featured on the blog I found early on in our journey owned a soft fabric book with pictures of different bugs. We had a copy of the same book. The girl’s mother posted a video of her, at 8 months old, pointing to the spider picture when asked, “Where is the spider?”

That became a benchmark for me. If Joshua could do that, then he’d be just fine, right? So I’d show him the book. I’d try and teach him to recognize the spider. I’d ask him where the spider was and see if he knew. He didn’t know. It would be months and months and months before Joshua recognized and could identify things in books. He didn’t meet that benchmark for normal development.

It happens all the time. Parents clutch desperately at things like that, trying to compare their child to other children because the “wait and see” is so hard. Not knowing what your child’s future holds is difficult. “Will they walk? Will they talk? Maybe if I can find another child who was just like mine then I’ll know what to expect from my child.”

It just doesn’t work that way. Every child is unique. It is simply impossible to map your child’s path based on another child’s. And putting your child up against these impossible benchmarks is only going to end badly if your child can’t do it. Why, oh why couldn’t Joshua just find the spider in the book so we could live happily ever after?

Bit by bit, that dream began to die. But I still desperately wanted to catch it. It’s like trying to catch hold of something slippery. It starts to roll away from you, and you run after it. At first, it’s only just out of reach, and you think you could still grab it. You just need to try harder. But it starts to get away from you, and the distance between you grows. You keep running after it, but the gap is only widening now. You have to make the decision to stop running and accept it has now gotten so far away from you that it just isn’t going to be possible for you to catch it. Sometimes you look around and see other people holding their dreams firmly, and it makes you sad. It makes you angry. Why couldn’t you have caught yours, too? Some people don’t even realize it is something to desire and cherish. For them, it is just something they expected to have and didn’t even know it was possible for it to suddenly roll away.

At 13 months, Joshua was officially diagnosed with cerebral palsy. In the course of a year, I’d gone from holding a new baby and believing he was going to be fine to accepting that my child has a lifelong disability.

Focusing on your child and his or her progress instead of focusing on where your child “should” be feels like a weight being lifted from your shoulders. You are done running after something you can never catch. Instead, you can enjoy the walk and the beauty around you.

It is a process and a journey unique to every parent of a child with a disability. But each and every one of us is asked to slowly give up on the hopes and dreams that every parent has for their new baby and to begin accepting the child we have for who they are, not who we thought they would be. Letting go doesn’t mean giving up. It just means understanding that helping your child be the best they can be doesn’t mean striving for “typical.”


This post originally appeared on Amazing Joshua.

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Originally published: March 10, 2015
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