Baby steps to steps: floppy muscle style

This week I finally completed Gabe’s Disability Living Allowance renewal form. I have had it since April taunting me every time I have a spare hour to sit and watch 90201 or Don’t Tell the Bride. Get up, it cooed from the desk, hey you lazy bum, come and fill me in.

Bog off, I would shout back (to the desk; neighbours already think I’m strange).

I just couldn’t face it. Not just because it is hard – it really is as you have to flip all your positivity on its head and think about all the negative elements of a child like Gabe – but it is also tedious as well. You have to split down the most mundane tasks (like bathing a baby and picking them up out of a cot in the morning) into minutes. Yawn! On toast!

We have filled in two annual forms before but this time it was different as Gabe is on the brink of turning three and once a child turns three, we seem to enter a new world.  A world were we get a Blue Badge (one of my life’s ambitions) and help with a big car (to store a wheelchair – double yay!). You see at three he gets assessed on his mobility – or lack of. The gap between the non-mobile and the mobile at three, it seems, is suddenly huge.

I had to take a running jump (no pun attended) at this mobility section armed with Heineken and a family pack of Maltesers. I approached it with a deep breath and set aside a good couple of hours.

Can your child walk?
Yes (go to the next question; 1 of 136 more)
No (proceed straight to the end)

That was it. No. He can’t walk. The end. I hadn’t even opened the Maltesers. Boo!
I wanted to write afterwards – no, but he is trying damn hard. Every single day.

This is why I wanted to link to the Small Steps to Amazing Achievements Link up so I could big up Gabe’s small steps to steps.

And here it is.

Gabe at conductive education 


He has been working towards this for a while and it is the focus of a lot of his therapy in the weekly sessions he has with the Centre for Conductive Education. But so far he has only been able to do it with support or by leaning on to a wall.

Learning to stand

There is a long road to travel as he is so hindered by his hypotonia (low muscle tone) and he seems to take a while to process motor skills. As the hypotonia has left his hands weak and oversensitive, learning to transition through movements is also very challenging.

The good news is that this low muscle tone, according to his therapist, will become less of a problem as he gets stronger and as his strength in his hands improves so will their sensitivity.
So I am daring to start to believe that one day, with a lot of hard work and perseverance, this child might surprise us all. 
That one day I’ll hold him by his hand and together we’ll walk up the road.
Gabe says: “These boots were made for walking. Get out of my way.”

Ethans Escapades

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7 Comments on Baby steps to steps: floppy muscle style

  1. sabrina montagnoli
    July 4, 2013 at 5:22 pm (9 years ago)

    Good luck on your journey have you obviously have the best support a mummy can give.

  2. Jane Roberts
    July 5, 2013 at 3:21 pm (9 years ago)

    I can really feel your pain regarding the DLA form, I hated filling this in. Such a fantastic post, I really hope you share your journey with us. I'm sure your superstar will walk by your side in the future.

    Thanks for linking up with Small Steps Amazing Achievements :0)

  3. Mummy of Two
    July 5, 2013 at 7:13 pm (9 years ago)

    What a gorgeous boy and well done on the standing by himself. x

  4. Graham Flaherty
    April 2, 2015 at 10:39 am (7 years ago)

    Great piece of writing about the muscle building program, I really liked the way you highlighted some really important and significant points. Thanks so much, I appreciate your work.


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