Ready, Steady …

I didn’t write a Small Steps Amazing Achievements post last week. I couldn’t. Nothing amazing. No achievements. Some days I consider getting out of bed and managing to crawl back into it some time before the next as an achievement, but that wouldn’t make for an interesting blog post, would it?

But it was worse than that. I felt/have been feeling that things were going backwards with Boo. Achievements were vanishing before my eyes. In particular his sitting (he can’t sit independently at 18 months old but he had looked like he might in the next few months) looked further away than ever. He was/is floppier in his trunk. This will make me sound awful, but I was hoping he’d get a temperature so I could pinpoint an illness as the cause of this regression and look forward to it passing.

But he didn’t. He has, however, had a growth spurt recently. Quite a massive one judging by the trousers that look comically short on him now. That could be it. Please let that be it. But whatever the cause, the effect is the same. No progress or even plateau, here. No achievements at all. We’re playing the two steps forward, three steps back game again. And I don’t like it.

So with tail between my blog’s legs, I tweeted Jane last week to let her know that there was no post for the linky that week. She reminded me that Sissyboo can and does achieve things, too. She does, of course, but I couldn’t find anything to report there either. And then I was chatting to one of the lovely bloggers over at Tough Little Cookies and she put things into perspective. She asked me if there were other gains that might account for Boo’s losses. And then she reminded me that he is still so young. 18 months actual, 15 months corrected. In her words: ‘the story isn’t over yet’.

Between her and Jane I had a bit of a wake-up call and have been reminded how much my own state of mind can affect perceptions of what’s going on around me. I tend to think that I feel low and embattled when things are going wrong with Boo. That does happen. A lot. But if I can’t even see the marvellous things Sissyboo is getting on with, then maybe things are wrong with me. With how I’m seeing things. It’s probably a bit of both, truth be told. Boo is in a rut and so am I.

I’m not out of it yet, but for the past couple of days, I feel like I can peer over the top at least. The catalyst was Boo’s first SALT (that’s speech and language, for the uninitiated) appointment. Boo has lots of sounds and vocalises a lot. He doesn’t say yes or no, but communicates both through laughs and gestures. He says ‘Daddy’/’Dad-da’/’Dad’ a lot and although he seems to be a little more indiscriminate in his use of the word than we’d like, if you say ‘Where’s Daddy?’, he looks straight at The Grumposaur.

But who knows what Boo’s CP will do to his speech. I have been warned about the possibility of him having to use communication aids and of him potentially having learning difficulties. As with so many aspects of Boo’s development, we just don’t know.

So I went to the appointment with a mixture of pride that there he making sounds and vocalising –  that he says ‘Dad-da’ ‘Oh dear’ and occasionally ‘hiya’ – and fear of the therapist’s verdict.

The first game she played to test Boo didn’t go well. She sat opposite him said ‘Ready, Steady’ and then paused waited for him to say ‘go’ before she would pass a ball to him. Well he has a ‘g’ sound but he doesn’t say go. That said, he knows what ‘ready, steady’ means (we use it at home and they do in conductive education, too) and rather than say ‘go’, he just giggles and squeals in anticipation while waiting for whatever is about to go to get gone. He then had to pass the ball back to the therapist, but only when she said ‘go’. He got what the game was about instantly, but he has quad CP. Balls skills are not high on our list of current achievements.

Then she gave him a succession of two cards to choose from. So she would show him ‘ball’ and ‘doll’ and ask him to pick ‘doll’ in the hopes he would grab the correct card and post it in the letter box. Now I don’t like repeating myself, but he has quad CP. Picking up thin bits of paper and holding them is one thing. Trying to then move his arms with sufficient dexterity to twist them round to a post box and put them through a small slot is like asking the Grumposaur to thread an embroidery needle.

It wasn’t her fault. She had never met Boo before and after he’d given her enough ‘I didn’t think I was coming to a physio session today’ stares, she made the physical aspect of the game easier so his cognitive abilities might be clearer to her. He just had to reach out for the paper and then we held the box under it for him to drop it into.

And now… drum roll … here’s the small step we’ve been waiting for and it really was an amazing achievement, even though it didn’t surprise me.

He got every one right. Every. Single. One. In a game that went on for a good 5-10 minutes.

Now, I know this doesn’t mean too much. The speech therapist said she would like to know if he could do more complex recognition (such as the difference between a card showing a boy swimming and one showing a boy jumping) but he is only 18 months old (15 corrected) and I know lots of toddlers who couldn’t do that. She wants to start a communication board for him and my homework is to think what I would like him best to communicate so I can set one up. (Since I understand him pretty well, this is hard, but I think a clear ‘yes’ and ‘no’ would be good.) She said it would be paving the way for communications devices down the line if we needed them.

But I am optimistic that Boo will communicate verbally. He is already. The only room for doubt at the moment is that his understanding is clearly much better than his expression. But it was like that with my daughter, too, and she is a very articulate little girl.

That he has this level of cognitive understanding is a big achievement for Boo. This appointment happened just a few days after seeing the words ‘severe brain damage’ in black and white on the neurologist’s report. Anyone who has read this report or seen one of Boo’s CT scans before meeting him does not have high hopes for him. Even through her wonderful manner and terrific kindness, I could see that the therapist’s expectations were not high. She was cautious about his long-term development. That’s her job. But I could see she was pleasantly surprised by Boo’s engagement with the world around him and particularly with his understanding and the range of sounds, if not words, he makes.

As for me? Well, I was proud as anything. As I always am. One day we’ll get that ‘go’ and there’ll be no stopping him! ‘Ready, steady…’

 

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14 thoughts on “Ready, Steady …

  1. sheetsoflightning

    Wonderful acheivement Boo and Mom! He has the sounds, he will get there. My little guy, pretty much the same age, with far milder CP has no consonants at all. He has but one vocalisation which sounds like “here” which he uses for everything. The words “bye” and “aaai” (light) are gone now. I think Boo has great potential and with SALT will make great progress. Thank you for your post, we start SALT next Wednesday. Hugs

    Reply
    1. mrboosmum Post author

      Lovely to meet you. And you have a blog too? Will be hopping over. We have been on the SALT waiting list for 9 months and I didn’t know what to expect but I was very impressed and am sure it will help Boo and your little one.

      Reply
  2. emma t

    Great result, good job Boo and Mummy. Sounds like recognition and language will be his cup of tea, and that hopefully with the SALT support, you’ll be able to work along to help him progress. Lovely achievement and post to read.

    Reply
  3. Jo Laybourn

    How lovely. What an open and honest post. Boo sounds like he is trying really hard and you have every right to be proud. Being a mum is hard and looking at things through the wrong eyes is quite common in my experience! Well done to you both x

    Reply
  4. Pinkoddy

    Oh that is such a lovely achievement. Remember not to be too hard on yourself or Boo. My lad says words (he’s 4 1/2) and just got a few visual aids and it’s really helping him – I hope it is as successful for you too.

    Reply
  5. brinabird and son

    I am glad you got the support to refocus and see the smaller things and that was such an amazing achievement. Parenting can be such an emotional roller-coaster and I think getting through the day and acknowledging that is important sometimes. I hope all the new aids will help his speech, they really are useful tools.

    Reply
  6. outoneear

    There are certainly hard days in our journeys, that’s for sure. And there are times it seems like we do move backwards instead of forwards. But suddenly things can change for the better. I’m glad you have support. Hugs from Oregon to you.

    Reply
  7. Jane

    We always go two steps forwards, fifteen back. Most of the achievements I write about Ethan will be lost but I have been told they are not forgotten, just there for when he next needs that information. I too get very low, and then have massive highs, I have been told it’s all part of the ride! It sounds like Mr Boo is in the same place as Ethan, can understand what is asked just can’t communicate it. Our little guys will get there, it may take a bit longer than others but they will get there x

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

    Reply
  8. Mummy Wife Woman

    I never know what to comment when i read your posts some days because they usually leave me quite speechless with tearfilled eyes. Jane has summed it up in a nutshell above. 18mths ago my Bruiser couldnt sign or say anything but yet he undertstood everything and that was so frustrating for us all! with the help of our SALT and PECS and Makaton, we are getting there. Its hard bloody work, something I know you are no stranger to but you and in particular Boo, will get there!
    wonderful heartfelt post. #SSAA

    Reply
    1. mrboosmum Post author

      Thanks so much lovely. What a fabulous comment. I love your Makaton posts and it’s something I need to work on. I just don’t know, given the difficulties Boo has using his arms how useful it could be to him, but I am learning that there are ways round it. PECS are clearly going to be a big part of our lives, I think, and I’m keen to try them. We take inspiration from Bruiser’s progress and your fabulous blog!

      Reply

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