On standing

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We’ve started a new exercise at our Monday Morning playgroup – standing. I don’t mean the standing that happens in the stander but proper standing, on his legs – not strapped in. It takes two people to support him and he’s always leaning against something (because head and core and legs is too much to think in one go) but you GUYS!

His feet are on the floor! His legs are straight (either with the help of us or gaiters) and he’s upright!! I’m glad this is a thing we’re working on. It feels like a step forwards. Its delightful to see how tall (!) Mikaere is, and it’s not hard to take that leap of imagination and think on what things could have been like if (there’s always that if and it’s a dangerous path to spend too much time on, but I let myself daydream for a moment or two).

I don’t know if we’ll ever get to unsupported standing, Mikaere needs a lot of encouragement (read: hands on his knees or leg gaiters and lots of cheering and big fusses) to straighten his legs. We currently have a floor baby – that’s his happy place, lying down on the floor. Where he can kick and wriggle and have some movement – the floor is where he does it. We always set up a safe space for him to wriggle, lugging about mats and baby blankets for him to lie on.

The idea that the world might be more accessible to an upright Mikaere, that standing is one of the (many) requirements of walking… standing is one of those gateway milestones for the hopes of a special needs Mama, obviously.

He’s not standing unsupported by any way, shape or form, but for a five minutes on a Monday morning Mikaere stands outside his standing frame. He’s standing, weight moving through his hips and legs and little wriggly feet. I’ll take it, absolutely.

On being open to the special needs baby groups

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Last year was a year of fear. It felt like we spent the entire year fighting fires and when we weren’t we were on the watch for smoke.

Mikaere didn’t spend much time around other people. We kept him inside his safety bubble as much as possible – no children’s group, no mummy and me music time, no playgrounds.

Nothing where children with coughs and snuffles could share their illnesses.

In places we had to go (like hospital waiting rooms) Mikaere was in his buggy with the rain cover on. It keeps out rain AND germs from other people.

We also had enough kit to manage any coughs or colds at home. The o2 and suction and the pulseox.

I think we did a great job, Mikaere only had one hospital stay due to rhinovirus, and only two a&e trips/stay at home dips (enterovirus I still hate you) which we weathered.

Considering how vulnerable he was a small wee babe, I think we did okay.

But Mikaeres a bit older now. A bit less vulnerable (we hope) and also doing really really well. So while things are good, we relaxed a little and started two special needs baby groups.

I still have the fear and question constantly whether doing this is a good call, but we’re trying. I think the benefits for socialising and regular ‘fun’ appointments outweigh the risks a little bit (we’re also a long way through term time when most kids are over their September illnesses, which helps).

One group is a physio/play session at our local Small Steps. It’s amazing. Our little group is made up of three boys, at a similar level to Mikaere (ie, not sitting or rolling) and for an hour or so it’s like a physio session but with toys and singing. We as parents run through a supervised set of activities and exercises with our babes and have a nice chat at the end. We’ve been to one session and while it was a mission getting there I was pleased we went. Pleased Mikaere responded so well. I’m looking forward to going back.

The second was a music and me time at an Enhanced Children’s Centre – another centre for special needs kids. This session was less structured and awkwardly the session overlaps with the time Mikaere’s usually napping. Still, we went. He enjoyed the end of the session and proper got involved. It was a lot of sensory action with music. The range of ages and abilities in this group was much wider.

Here’s the thing I struggle with special needs play centres (and perhaps neurotypical parents do this too at nursery, I don’t know) but it’s so hard not to do the comparison glance.

No one offers their diagnosis up front (cause would be weird – our babies aren’t their diagnosis) so it’s all taken in with a side look. That baby is head holding, but has vision issues. This one has uncontrolled spastic movements, just like Mikaere. This baby is grasping and exploring their mouth, I wonder if Mikaere ever will. This girl is going for her hearing aid, just like Mikaere does with his NG.

And while I’m side looking so is everyone else. Is your baby more or less disabled than mine?

It’s weird. We’re all carefully orchestrated by the centre staff, and we’re all focused on our children.

Before these groups, our world of special needs was defined by our drs, and medical appointments and therapies. There is no comparison, because it’s all about Mikaere. With NKH, our support group is online – so there is some distance.

These groups are all right there and I’m realising our experience and our special needs life is just one of many.

Still, I don’t think Mikaere is bothered. As long as his dummy is handy he’ll tolerate the physio and sleep through the music. Best take his lead then, right?