Friday the Physio Part 2

What a difference a week can make. After our last physio experience at the new Friday sessions, that left me tearful (to say the least), I knew I had to tackle it again and make the best of it…

We set off on the bus and Audrey was full of beans as usual. Waves and kisses, requesting singing. 

We arrived at the group and we kicked off “walking” over to a table of stuffed toy dogs. The ladies were there welcoming and smiling, I explained how hard I found it and kept saying things like “I’m no good at pushing her, which is why I know it’s good to be here, because you are comfortable pushing her” and “Oh she is really going to hate that” – they (rightfully) picked me up on this and explained I needed to be more positive. We are “encouraging” her, not “pushing” and take on each task telling Audrey “this is going to be fun!” Rather than anticipating her hating it!

Actually, I was surprised at myself, because in general, I do think of myself as a positive person.

Today I was thinking about the ability to look on the bright side. I am generally a glass-half-full person without really giving it much thought. I mean, I don’t think of myself as always upbeat and full of smiles… But the fact is; I am a positive person by nature.

When Audrey was born I remember thinking (when wrestling with the news that she had Down’s Syndrome); what would be the worst thing that could have happened – would I rather this baby was dead? And of course the answer was no. I kept reminding myself that we were very lucky she was alive and that was the most important thing. Was this ‘syndrome’ really the end of the world? No.

Then when we had to deal with her coming home on oxygen, I kept reminding myself that we were so lucky she didn’t need any surgery and that her heart was healthy.

And now we have a bum-shuffler who cannot stand unaided, but I’m so very grateful that she is mobile at all and I focus on her other achievements which feel more important. Audrey can’t walk or stand, but she can ask for food and drink and she understands so much of what we say. Communicating is an amazing thing and it really helps us feel connected to her.
Her nature, just the way she is, naturally gives us reason to be positive. Smiles, giggles, kisses and cuddles – for the most part, that’s what our time with Audrey is all about. There’s no need to dwell on blood tests, physio sessions, developmental delays… In fact, I’ve seen many other parents of kids with DS revel in the fact they get a baby for longer. Time flies, but it’s flying a little slower with Audrey.

Onwards and upwards in our physiotherapy (I say this as Daddy and Bibi are taking her this week!!).

This was us taking a toilet selfie after speech and language therapy last week -which went very well by the way. We are working on two word phrases and since the session Audrey has said “more please” and “more toast please” woo hoo! 

  

The downs 

Audrey doesn’t have a lot of physiotherapy sessions as the NHS service here is understaffed. This hasn’t been ideal, but I haven’t been excessively worried about it.

As we near the arrival of Audrey’s baby brother however, I do grow concerned over her lack of interest in standing/walking and I want this to progress as quickly as it comfortably can.

The truth is, we’ve been given exercises to work on at home, but I hardly do them because Audrey gets grumbly/upset. I basically let her get away with 20 seconds of standing here and there and then give up.

Some other parents of children with special needs recommended a local service (funded by a charity) that offers physio on a weekly basis, so I got in touch and we attended our first session Friday morning.

I’m not sure I can quite put into words what it was like. The funny thing is, I’m sure the ladies running it would have had absolutely no idea that when I left I had a cry on a friend’s shoulder because I found it all so hard. When I was at the session I bottled up all my feelings and was polite and thankful for their help. And that’s the thing – they were helping, this wasn’t a torture group! But oh it felt like torture.

Audrey was given some shoes to wear (the new boots we bought her just a week ago aren’t supportive enough) and she was “encouraged” to be in certain positions (kneeling, standing, walking(!), sitting and crawling). Audrey was her usual friendly, kiss-blowing fabulousness – but she spent much of the time saying “nished” (finished), “no” or simply grizzling. The bottom lip came out in full force (I just wanted to cuddle her!) and there were tears (from her, mine came later).

The ladies running the session assured me she wasn’t that upset (they’d seen worse) and they were encouraging… But it was one of the first times I felt fully exposed to a feeling that things were hard. That having a child with Down’s Syndrome involves a struggle. And I was angry that I have to put her through that in order to progress her walking… It won’t just come to her, we’ll have to work hard and it will be hard.

It was also just really horrible going to a group that wasn’t fun. Don’t get me wrong, they sang and we looked at books and drew pictures and had a snack… Most of the usual stuff… But normally I go to groups specifically for Audrey to dance and have fun (sometimes whilst learning of course), but I sit there beaming with pride whilst she does her thing and we leave happy.

This involved all the grizzling, plus questions about what she can and can’t do. It just highlighted her issues, rather than all the positives I usually focus on.

And I appreciate that there’s no use in me ignoring the tough stuff – we have to deal with it and get through it. But I guess I am haunted a little by some lovely things people said when we first had Audrey… “She’s so lucky to have you as parents, you’ll work so hard for her”, lots of people said we’d be so great at helping her progress and I felt worried about this expectation because I’m quite lazy, forgetful and also a soft touch – this combination doesn’t make for a great task master! I knew we’d work hard on the signing, speech and read to her a lot, we would play and hopefully make it educational… But I wasn’t confident I’d “push” her. So I guess this group highlighted this insecurity – or rather exposed it!

Now it’s been over 24 hours since the group, I’m feeling better about it (and remember, I am a mess of pregnancy hormones), so onwards and upwards! We’ll work hard and Audrey will enjoy standing up eventually and when she’s walking, all this tough love will have been worth it.

I don’t have any pictures from the group, but I’ve always got pictures of Audrey to share, so here she is from this morning: