The Middle: Having a Toddler With Hypotonia

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Last week, L had his 18 month well visit. It was hard for me.

There were questions on the Autism screening that I felt I couldn’t confidently answer. Sometimes he seems to stare at nothing. Sometimes he seems fixated on one object. The child has no fear and I can’t remember the last time he looked at me or Mr Boots for assurance on a situation. The screening didn’t have the option for “sometimes” or “maybe.” I was too scared to speak honestly with the pediatrician about those questions on the autism screening.

I requested the referral for the pediatric orthopedist that Ms Mary recommended. I explained to the pediatrician that Ms Mary diagnosed L with hypotonia (low muscle tone). The pediatrician asked if anyone from Early Intervention suggested taking L to a neurologist. They hadn’t.

What would they do, exactly? I asked.

She said they might be able to determine if there is an underlying reason for L’s hypotonia and slight delay or if L is simply doing things on his own terms.

What I haven’t said here (out of some fear) is that sometimes low tone can be nothing but just that: low tone. But it can be part of a larger issue: autism or hypothyroidism, among a long list of other things I’m trying my best not to consult Dr. Google on.

Honestly, I keep thinking there is an underlying reason.

On very bad days I feel the reason is that I plain suck at being a SAHM. Do I hate the first year so much that I have failed L? He isn’t interested in books and won’t let me read to him. Maybe he would have been better off being taken care of by someone else while I worked. My biggest fear of getting to stay home with L from the start was that I wouldn’t do as good of a job teaching him, playing with him, and interacting with him like my mom did with G.

But then there’s the floppy arms and legs. There’s the complete unwillingness to stand at times. This can’t be all in my head.

The Late Side of Normal: Having a toddler with hypotonia via

Around 18 months a child usually says about 10 words. Last night, Mr Boots and I struggled to come up with five L will say on a consistent basis.

Ball? Dog? Car? The basic words I’ve been trying to get him to say since he wasn’t quite a year old? The thing that bugs me about his speech is that he tries. But he often puts his tongue towards the back of his mouth and just makes sounds. These sounds will mimic the correct number of syllables, so I think he is trying. He babbles way more than G ever did, so why the delay here?

Being told that a neurologist might be a good idea was exactly what I wanted to hear. It’s the next step in getting some sort of answer, I just didn’t know it. For the first time L’s doctor didn’t dismiss a concern, despite her thinking L was just fine.

She said I could wait and see if the early intervention folks agreed, but I decided not to. As with early intervention, I am glad I didn’t. The neurologist can’t see him until mid-October.

It was a hard phone call to make. For two days I broke down and cried every time I sat down with the referral list and my phone. I don’t want there to be an underlying reason because I don’t want there to be anything wrong with L. But I do want there to be a reason because I’m tired of being so uncertain of this voice in my brain, in my heart, telling me there is.

I want an answer.

www.muddybootsanddiamonds.comHypotonia isn’t considered a real medical diagnosis. Determining an underlying reason for it can often be unsuccessful. “He’s doing things on his own time,” is something Mr Boots, my parents, and my in-laws tell me over and over, but this doesn’t sit well with me. They see a healthy, happy 18 month old who is reaching his milestones a bit late, but not too late to cause any real alarm. It’s been hard to talk about what my gut tells me because they see me as being overly anxious…over thinking.

I came across a post on The Mighty yesterday: When You’re in Between Being a Special Needs Mom and a ‘Typical’ Mom. I usually don’t read anything from this blog and the title really didn’t seem like something that applied to me, but for some reason I clicked the link on my Facebook feed and read.

The author, Ali Cummins, has a child with hypotonia and one paragraph spoke loud and clear to me. This is exactly how I feel right now:

A mom of a child without a diagnosis but with delays. A mom with many worries and with little answers. A mom who feared her child may never walk, but who now chases her child in the backyard, through the grocery store and around the house, especially at bedtime. A mom who spends her days at the park playground and her evenings at physical therapy sessions. A mom of a child who appears typical to some and anything but typical to others.

The middle is a strange place to be.

2 thoughts on “The Middle: Having a Toddler With Hypotonia

  1. My oldest daughter also has hypotonia (and some speech issues). She didn’t walk until close to 18 months, which is when we started therapy. She now runs and jumps (although is still a little bit behind her peers). Best of luck to you and your son in the future!

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