Baby G and XXXXY Syndrome: Toxic Thoughts of a Special Needs Parent

When it comes to being a parent, we all tend to think that we’re not doing enough. Our punishments are too harsh, our voices are too loud, or our fuses are too short. When it comes to being the parent of a kid with special needs, every so often, we also think other thoughts that are even less rational than that. But first, an update on the G-Man.

It's ok to have awful thoughts about being a special needs parent. Most of us are scared of what we don't understand, what we can't predict or control.How He’s Handling XXXXY Syndrome

Physio: Baby G is really starting to come along with his gross motor. We’ve been lucky enough to borrow a walker from Niagara Children’s Centre for a few weeks, and so Baby G has been able to practice at day care every day.

Fine Motor: Our physiotherapist is away for a few weeks, so we’re supplementing with a focus on fine motor and speech. He’s showing a lot of progress, pointing and pressing with a single finger, putting puzzle pieces into place, and working on his pincer motion with his thumb and forefinger. Our occupational therapist gave us some stretches to do with his shoulders, to encourage more freedom of movement. She also gave us some wrist strengthening exercises to do, giving him more range of motion when he plays.

Speech: This is probably where Baby G is showing the least improvement because of the delays his extra chromosomes cause. He does babble, and mimic certain sounds, but mostly are “ah’s or “o’s”, very few consonant sounds. There are times when I’ll get a good “mama” or a “hello” that’s definite and distinguishable, but those are few and far between. After discussing our concerns with his speech therapist, she suggested another hearing test, just to make sure what he is hearing and what he’s not.

He’s starting to play with us more and more, and loves it when his sister plays peekaboo with him. He’s starting to dance to music when he hears it, and really enjoys watching PAW Patrol, so I’ll be hearing that theme song for about another three years.

How We’re Handling XXXXY Syndrome 

When I found out that my son had XXXXY Syndrome, I really didn’t have time to react at first. I was too busy filling out forms and answering questions to actually think about what it might mean, how it would change my life, or how it would change me.

I remember doing exactly what the doctor told me not to do, and that was look up his condition online. There’s a good way to stress yourself out, looking at cases of genetic disorders that are 30 years old, and filled with hard, medical terminology describing the physical and developmental abnormalities of an innocent little boy. Ya, I was an idiot.

While I wasn’t hysterical, I was scared, and some pretty toxic thoughts popped into my head during that time. I suspect they will materialize in the future as well; it’s only natural, and that’s what I want to acknowledge here. While we all do our best with our boys, there’s no denying that scared little kid in us that plants the irrational idea that we can’t be the parent of a special needs child.

“My eggs are bad.” – Oh ya, I went there, but certainly didn’t stay long. How much energy could I have spent stewing over my body, my womanhood that I literally had zero control over? Pfffh, decades if I wanted to, but for some reason, I didn’t let that thought stick around. I pushed it out of my head and moved on. But I did have it, and that’s ok.

“I Can’t Do This” – I thought about parents of kids with disorders and syndromes, physical disabilities and behavioural issues. I thought there’s no way I could do what those parents do. They’re powerhouses. They go through struggles with their kids hourly and get the shit kicked out of them until they finally collapse at the end of the day. Will it be like that? I can’t do that. I’m not that kind of person. I won’t have patience for it. I won’t have the stamina. How will I relate to my son? I’m scared I’ll want to quit. It’s amazing how the unknown makes us feel so insecure. It makes us question ourselves, hindering any chance of discovering what we’re really capable of when it comes to our kids.

“I’m Not Doing Enough” – Just had this one a couple of weeks ago. Baby G was showing progress, but I wondered if it was enough. At the end of the day, we eat dinner as a family, play and watch TV and then it’s bedtime. It leaves so little time to work on physiotherapy, speech, or fine motor with him. I’m relying on his day care provider for most of his development. Pretty big deal. There are days where I look at him and I feel like a failure, but to let that permeate my head? That won’t do him any good at all.

I consider myself extremely lucky to have found out about Baby G’s XXXXY Syndrome while I was pregnant with him. Some parents experience such sudden change, they can barely catch their breath before they’re overwhelmed with scheduled therapies, wellness plans, and counselling strategies. I’m not sure how I would cope a situation that wasn’t as gradual as the one I’ve been (quite frankly) blessed with.

I’m realizing now all that I didn’t understand, that I’d assumed about special needs kids and their parents, and all that I’d wondered about, but never asked. And while those irrational thoughts might pop into my brain from time to time, I’m secure enough to acknowledge them, feel the feelings, keep what matters, and dispel the rest.

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