And of course he aspirated

We've had a busy week. This will be a long post, stay with me if you can.

New Speech Therapist.

Thanks to Cerebra, that fabulous charity for brain injured children, we have been given £500 in vouchers to spend with a private speech therapist. After a bit of searching we have found a lovely lady who is going to help us with Zack's communication skills.

She came round on Saturday for an assessment. We went through all the of Zack's little ways that he communicates now, how he anticipates certain games, how he laughs in amusement at things, how he shouts at us with intention when he doesn't want t go to bed. All good building blocks to start off with.

Dan was explaining how Zack doesn't like his nose to be pinched and usually pushes you away with his hand. Speech therapist tested the theory out. Zack made his daddy look stupid as he smiled at the nice lady as she pinched his nose. Twice.

Oh that wasn't all, it seems he took a real shine to her. He was playing in his little room and we pulled him out so she could take a closer look at him. She took one of his hands and shook it whilst saying the words "Shake, shake, shake." Well, that was it. Very, very funny. She then took his other hand as he lifted it up and shook them both together. Ohhhhh absolutely hysterical. She kept dropping one of his arms to see if he would lift it up again to continue the game, which he did. Several times. She explained that this could be him just reacting without realisation and we are teaching him what it is so that he does it again. In this instance the shakey shake game. Dan and I think he knew exactly what he was doing and was doing so on purpose in order to carry on his flirtation with his new best friend.

Favourite teacher is now coming back for a therapy session with lots of activities for Zack and I to do. I am sure he can't wait. The tart.

Videofluroscopy - so not a good day.

We took Zack for his videofluroscopy on Monday. In a word, it was terrible. The test was to see where the food is going when Zack eats orally, to see if it is going to his stomach or if he is aspirating and allowing food to go into his lungs.

When we got into the room we were told he would have to be seated into a tumbleform chair. I knew as soon as I saw it, he would hate it. The chair is quite far back and positioned a bit like a car seat.  I explained we usually feed him sat on a knee, but we were willing to give this a go for the purpose of the test. I put him in the seat, and what was most heartbreaking of all was he gave the SALT such a beautiful, trusting smile. Poor Zack.

His dad fed him the first two bits of food which he swallowed safely. But he was getting agitated in the chair, Dan asked if he could sit him on his knee. They told him to sit him with his back pressed on Dan's chest. One therapist was holding Zack's head up and another was spooning large blobs of nasty stuff into his mouth. And all my baby was doing was sitting there staring at these five people in front of him completely bewildered by the whole thing. He wasn't even concentrating on what was happening, food was literally falling out of his mouth. And of course he aspirated. So they stopped the test.

I did make a point of how I thought it was confusing and unfair as he is fine at home when we feed him. He looks at us, we do small spoonfuls and I wait until I hear a swallow. The whole process during the test was unnatural and upsetting. Needless to say we are now in limbo as to what to do about his feeding so have an appointment with the SALT on Monday to discuss everything. I want to carry on trying with him, but at the same time I don't want to put him in danger of aspirating and causing him to get very poorly with a a chest infection. By the way Zack so far has never been in hospital with a chest infection caused by aspiration therefore we must be doing something right.

The great Switcheroo

And with the downs came the ups. Zack's physio and his vision teacher paid a visit this week to take a look at Zack in his standing frame. The vision teacher brought a long a switch and adaptor for us to try.

The switch is a big round button that is connected to a box. The box is then connected to a piece of equipment, in this instance it was a small fan. Every time the button is pressed the fan comes on, teaching the child cause and effect.

I wasn't holding out much hope that Zack would get this but boy, did he prove me wrong. Once the teacher showed him what to do he really tried his best to move his arm and hit the switch. He did it consecutively three times. At one point he moved it with one hand over to the other, he even tried reaching out with two fingers to it. I was amazed. I couldn't really believe it. I turned to his teacher and said is he really doing this. "Yes" she said.  "Oh I have no doubt how aware of everything he is, he'll get bored of this quite quickly. We can work up to having three or four switches that make different things happen."

Eh? Hang on a second, are you sure? But she seems confident and he did love the fan when it came on. So now mummy is tracking down some switch toys to borrow, rent or buy.

But after such a crappy start I was so proud of how he got it straight off the bat. Pants you really are a clever little cookie.


Becca said…
Linzi, you know what this means, right?

Powerchair time!

Thrilled for Zack and for you. Already obvious he's going to do great.

Feeding - realistically if he's getting through whole meals without coughing, choking, gurgly noises etc. then he's fine. Really fine. You don't get to his age without ever having a chest infection if you're aspirating. Might help to thicken liquids, maybe, if he's struggling there. But if there was a major problem, you'd know.

PS grownup disabled person with severe physical impairments here - writing this with switches right now :D
Becca said…
Oops. Other bit was Hi, I'm Becca.
Thanks Becca. It's nice to hear from a grown up disabled person always gives a perspective on things. And powerchair.....ooooh now that is something to consider, their will be no stopping him.

Becca said…
Very nice to ‘meet’ you. This is Caleigh, who is 2 and has CP, trying out a powerchair driven with switches: click.

The majority of little ones who start off using switches to drive their chair will switch to a conventional or adapted joystick when they're older, but not everybody does, and it honestly doesn't much matter either way - mobility is mobility! Professor Stephen Hawking controls his computer, his communication aid and his powerchair all with a single switch. I use a bulked-up joystick for my powerchair, and 2 switches for computer and communication aid.

Communication wise, talk to Candle if you get a chance. They are *great*, really helped a friend of mine.

Am I right in thinking that you live in the NW? I'm in Manchester.
Thanks for the link to the blog and to the little girl using the power chair she's fantastic. I think if Zack got his hands on one of them he'd probably try and run one of the cats over!!!!

Yes we live in the North West in Warrington.

Will also take a look at Candle.

Many thanks


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