Physio/med update

Part of the reason for this blog is also to keep tabs on changes/progress for ourselves, so we can look back and say “oh yeah, that was happening then!” As a result, I’ll be including some kinda boring factual updates vs. musings. Here’s one:

We’ll revise our focus for the coming month to… WALKIN’! On Tuesday we borrowed a very cool walker called the “Kidwalk” and so will be practicing with it while we have it. A has backwards down pat, so we’re working on taking steps to move forward. He does a cute fluttery-feet thing now but think he’ll get the hang of it soon. The advantage of this walker, compared to others, is that there isn’t anything in front of him so he can walk right up to a table, etc. and be able to reach stuff easily. It also has a bit of bounce (A loves to jump) and is quite sensitive so moves/turns easily. Pics to come. Oh, and for added coolness, the back wheels light up with pretty colours!

Re: our neurology appointment, which was also on Tuesday, A’s med situation will stay the same as his weight hasn’t changed and he’s at the max dose of clonazepam for his size. Adding valproic acid was recommended, to treat the new drop seizures, but we decided to wait on that as the drops don’t harm him and aren’t happening that often. Adding another medication has its own set of cons so it’s always weighing one against the other – treatment vs. symptom. It’s hard to read a list of possible side effects and come out the other end saying “sure I’ll give that to my kid.” We’ll at least wait to see if things settle into any kind of pattern as right now the seizures are relatively new and inconsistent.

A also had an eye test, just for the heck of it, and all is well there. The Dr. was over 2hrs behind schedule so our day in the big city ended up being…. looong and waiting-roomy. Twelve hours later, we were home.

Hold the door?

I’ve got one pair of legs for three people – my two non-walking sons and I. Logistically, it’s an occasional challenge. Dropping A off at daycare on his daycare day is a fun little parade – he in the stroller, newborn in my carrier wrap, and me shuffling the load through snow with tired feet. There is no real way to lift A out of the stroller once we arrive to his room, as I’ve got the baby on me, so I must ask for help… and it’s never a problem.

When we go places, I necessarily run through the different possible scenarios of transporting the children to and fro. When to take who out of the car when and how and where and what accommodations will greet us at the other end – helpful/understanding people? wheelchair buttons to open doors? impassable steps? pitiful glances? ice? etc. The glances I can get past, but the steps not so much.

I’m transitioning slowly into an asking-for-help person. Generally, I’m an I’ve-got-this person, but with A, I can’t do it all. I literally just can’t.

I’m so thankful to have a super-together, loving husband who is endlessly awesome. And also nearby family who never hesitate to help out when needed (thanks Ma!). But I also now look to strangers, and services, and funding. I must let all of these things in, and in doing so, my load feels a little lighter. Thankful for the new, unexpected company.

The importance of simplicity for a complex mind

There are so many things to teach A, since most things need to be taught before being learned. In the early days, back when I was completely overwhelmed and lost and half in denial, most hours were spent reenacting the frenzy of exercises I’d been taught by therapists/found online/intuited. Gross motor, fine motor, speech, and all the sub-facets of these, were things I desperately tried to cover, so that A’s abilities wouldn’t fall too far behind, and I wouldn’t feel too guilty for it.

Sub-note: accepting that your kid is different is a process, especially when there are no (to you) obvious concerns until someone external points them out. The first year was a panic of he’s fine-he’s not fine-no I think he’s fine-wait no he’s not- type conversations and thoughts. Suspicious of all and any input from others, credentials or not, positive or negative. A sea of confusion. Eventually you swallow the reality, as your kid lags further and further behind, therapists give each other knowing glances, and friends and family furrow their brows and cock their heads, that this is happening. Then and mostly then, you rally your internal troops, puff up your chest, and totally own it. And here we are. Proactive mostly, and proud.

So I was assaulting my child with therapy until it sunk in, after weeks of not much changing, that we needed to trim the fat and focus.

A has serious motor-planning issues, which I believe the medical community would call dyspraxia. I would say this is his primary issue vs. low-tone, possible cognitive issues, possible autism, etc. etc. Being able to plan movement seems to be really difficult for him, as you probably gathered from my previous post about getting up on all fours. So clearly, therapy needs to be very to-the-point and very repetitive. Thus, I try to pick one or two things at a time to work on with him. I choose these things based on what I think would make him happiest to learn next, what would serve him well sooner vs. later, what his current strengths are and how to leverage those, what intuitively feels like a next step, and so on.

Lately we are working on transitioning from floor to sitting and sitting to floor and pointing to a picture to get a thing. We’ll likely be on this for many, many weeks with the odd bits of other stuff thrown into the mix for fun (walker, games, etc.). I will write another time about how we make pretty much every activity/interaction a learning experience (maybe that’s just general parenting?), but here I’m talking more about the big stuff.

Thinking inclusion

I think about the definition of and expectations behind the word “normal” a lot. I started a blog about it awhile ago before realising I wanted to be less abstract about my experiences with A. Here is the link: thinking inclusion

And now I’m realising that I still like to wax philosophical, so will continue to write in both places. I was thinking TI would align with my career somehow, as I work at the Inclusive Design Institute at OCAD U, and think about accessibility most of the time. But I’m not sure how exactly it intersects with paying work.

And now the universe has given me a child that really lets me live out the ideals and thoughts I’ve been thinking about for the last decade. I think it’s pretty great.

I feel like there is a road ahead where all the forks of my life will join into one awesome super-highway, I just don’t know what that looks like yet. But as my good friend Em once said, “if you don’t know now, just wait until you do.”

Fun vs. worry

Sometimes it’s easy to get bogged down by the stresses and worries of having a special needs kiddo. On the floor on his belly he is happy – but I worry about a seizure happening at any minute, jerking his head into a toy or into the floor. In his highchair he is happy – but I worry about him throwing his head back or staring at the bare bulb in the light fixture above the table. In the carseat he is happy – but I worry that he is too warm or cold or…

Lately I’ve been referring back to things I learned in my 20’s. Meditations and cognitive behavioural therapy tips that help de-stress, refocus, balance out. If he bangs his head, he bangs his head, and he’ll be fine. If he stares at a lightbulb, he’ll need glasses potentially, but he’ll be fine. If he’s cold in the car, I’ll warm him up better next time, and he’ll be fine. Take the power out of fear-inflated scenarios by acknowledging, yeah, sucks, but it’s not the end of the world or even a huge deal. Regardless of all my worries, he’ll be fine.

Reminding myself of this lowers my shoulders a little, makes my smile shine a little brighter, and lets laughter come a little easier. Reminding myself of this makes me a mom a little more fun to be around and as a result we all have more fun.

Christmas comes early

A has just re-started therapies – physio, occupational, and speech. We moved this summer and have been on a wait list to receive these services locally (well, still a 45min drive away, but such is life when one lives rurally). We had our first visit last week, and our second tomorrow. It’s awesome to finally get help/direction again, and this crew of therapists seems to be a sharp bunch.

Anyway, A is going to borrow a walker for awhile! It’s called a Kidwalk and I am beyond stoked for him to get movin’ in that way again (he used an infant walker at his grandparents when we visited and he loved that thing). I did some googling and it’s quite a piece of equipment. He tries it out on the 17th. I have a feeling this will be my, and hopefully his, best Christmas present ever.

We’ve also just received word that our request for respite funding has been approved! That means we can hire someone to help out, in whatever capacity we need. Am researching possibilities today.

This road

Being A’s mama has been a long and bumpy road that stretches out ahead… longer and bumpier. Would I want it any other way? Yes, of course. I would wish for my son to have an easier go, which would make parenting a lot less scary and stressful. Alas, here we are. Yet I remain hopeful, count our blessings, and recall that this is how life teaches you to live. And a life of things learned is a good life. A is an excellent teacher and I’ve no doubt he will touch many with his light.

Often I see A lying on his back, staring at the ceiling, quiet for what seems like too long for a two year old and can only hope to someday know what he is thinking in these moments. Is it simple or profound? Is it hard or easy? Is it unsettling or comforting? Will he ever find the words to tell me about it – will I find a way to teach them to him?

Lately, I’ve further realised just how much of A’s future abilities depend on us… it is easier to be passive and wait for things to happen but unlike typical children, who’s minds are sponges easily soaking up the world around them, A seems to need constant encouragement to let the world in. We massage reminders into his muscles, we smile directly into his eyes, we prompt/point/play in ways that say “We know you’re in there and you’re awesome. Show me you know that.” and we wait.

And in this space of waiting is where I have learned things. Patience, obviously. Acceptance, of course, as there is no alternative. Love, also obviously.

But also surprising things… like how far I can fray and still be confident in my strength. Or how confused and unsure of myself I can feel, yet still trust I know how to keep him safe. Or even how blind a pursuit can be, yet still finding answers. And how to find peace with a lack of answers.

I owe my son the world, as he gives me mine.

Seizure update

I email A’s neurology nurse updates semi-frequently, and thought pasting some of those notes here might be useful.


An update on seizures – we’re a bit confused! He generally seems to be doing much better off the Keppra (he’ll be completely off of it on Monday) – some progress developmentally as well as seemingly less/shorter myoclonic seizures. He used to have 2-4/day, each lasting 30s-1min but lately he has maybe 1 or 2 (sometimes none!) and they are often only a couple jerks. Sometimes the usual 30s-1min ones but those are definitely fewer.

However, as I said before, the drop seizures are new. We’ve seen several more since last updating you – they are only a 2-5sec in length, roughly, and he is aware/happy afterwards. Didn’t see any for the last few weeks, but this week I’ve noticed one every other day or so.

We’re expecting the clonazepam dosage to be increased on our next visit (he’s had a growth spurt!) and are hopeful this could be enough of an improvement, but please advise. It’s seems like there are so many variables, it’s hard to tell what’s what, and if the changes are Keppra related or something else – teething, growing older, weaning adjustment, the progression of his epilepsy? etc!

And we have lift-off! (from zero to all fours)

As I said, we’ve been working quite a bit on gross motory stuff. At newly 2, he is finally pushing up onto hands and knees on his own! Here’s how we encouraged him:

Push-ups
In the early summer we did a lot of pulling up on his middle/hips and saying “up! up!” to prompt him to do a little push-up. We were also having him play on the floor, over our leg, so that he was supporting himself with arms straight, in the four point position. Eventually he was doing push-ups on his own, randomly, adorably, and being quite proud of himself (we call it “making the proud-face”).

Getting over stuff
The next thing we did was get him to crawl (he army crawls) onto couch cushions, and over our legs, while playing on the floor, luring him up and/or over with treats and current toy obsessions. We did this for months, and I could notice him getting stronger and more confident each week, and also his bum and legs becoming more involved in his army crawling.

Hanging out on all fours
Just last month-ish, he started holding the all fours position for longer and longer lengths of time, when placed on the floor in this way. Often too, when he did one of his random push-ups, we’d cheer “knees! bum up!” etc. and pull his hips up to follow his push-up.

And finally…
Last week he did his first all-fours on his own – he’s done it a few times since but today…today he’s doing it over and over! So far, he belly-flops to get out of position and continuing inch-worming around, but you can tell he’s processing the possibility of moving his legs/hands instead.

Physio has suggested moving each of his hands forward and back to get him more comfortable with one-handed support and hopefully encourage movement vs. flopping.

Stay tuned! Am hopeful 4-point crawling is around the bend, and that crawling in this way will lead to things like pulling up on stuff (since he’ll be a smidge higher up in the world) as well as playing on his knees.

Intro

My son just turned two. He is absolutely amazing and gorgeous. It has taken time, but lately I look at him with less worry and more reverie.

As his mother, I spend the majority of my limited free time (when he and the newborn are simultaneously napping!) obsessively researching, to hopefully learn more about him. I endlessly google and read about: developmental delays, epilepsy, physiotherapy exercises, communication alternatives, sensory processing disorders, autism, genes in the 12th chromosome, milestones neurotypical kids reach and when, neurodiversity, disability funding, local disability services, etc…. and my favourite: success stories.

I often find myself on the blogs of fellow parents of special needs kids. They are the best – passionate, articulate, down-to-earth mamas and pops exhaustively searching for their own information to help their child, and relaying all the good stuff down to us googling folk. I’d like to contribute to this space in the hopes that our journey with A may somehow help others.

The story so far
A has a rare genetic condition that no one knows anything about, other than it exists and is likely the cause of his developmental delays (fine motor, gross motor, and speech) and epilepsy. We found out this information by getting his blood tested (chromosomal microarray) and discovering a teeny part of his 12th chromosome is missing (0.36mb at 12q24.31). My husband and I were also tested and we do not have the same microdeletion, so it was not inherited and considered “de novo”.

His condition is “unique” in that there is no one else like him and therefore we do not know what this means in terms of: will he catch up to his peers developmentally, will his seizures stop,  will he be an astrophysicist, will he be able to live independently, when will he walk, when will he talk, will he need help at school, will he always be quirky, and so on.

The magical mysteries that surround my son are, I’ve discovered, not uncommon in the special-needs-toddler world… many parents of delayed kids do not have a diagnosis, or if they do, still don’t have any concrete answers about what the future holds. It’s tough.

Sharing
I hesitate to publish stuff about A in case he really does turn out to be an average joe, and doesn’t appreciate his medical/toddler history being exposed to the world. For this reason, I’ve changed his name and will leave out specific personal details, so if/when he applies for that job at Virgin Galactic in 20 years, they’ll be none the wiser.

What now?
Right now A and I hang out quite a bit and work on stuff at home. He also sees a physiotherapist, occupational therapist, and speech language pathologist for gross motor, fine motor, and speech help, once every two weeks. He goes to daycare once a week to socialize, and will likely go more often soonish. He also plays with an infant development worker for an hour every two weeks. Needless to say, most of the teaching happens at home. It is tiring and frustrating for both of us, but it works… slowly but surely.

I’m about to play around more with communication possibilities. We’ve been focusing mostly on gross motor work (he can now support himself on all fours!) but I feel there’s a growing frustration within him due to lack of communication. He currently doesn’t have any words. Next stop… communication boards!