Tag Archives: speech

Good News Friday #54-57

I’ve been neglecting Good News Friday for a few weeks. It’s not because we haven’t had any. Far from it. It’s just that some of it – Boo learning to sit for longer and longer each week and the final emergence of that gorgeous word ‘Mum’ – have been so awesome that frankly I have had to write them up into whole posts, and I have run out of time for GNF.

So by way of a catch-up, and from somewhere inside the cyclone of our lives, here are some of the highlights of the past few weeks:

1) Sissyboo: What an awesome monkey she is turning out to be in a I’m-fabulous-but-I-am-also-six-and-therefore-maddening-and-know-everything kind of way. Her year 1 teacher left at Easter, which made Sissyboo, who is forced to deal with lots of change in her life on a regular basis,quite sad.

But in typical Sissyboo style, after bursting into tears in assembly when the announcement was made, and then spending the evening writing up an illustrated petition from all of her classmates to persuade her teacher to stay (which made her cry) she has taken everything in her stride. Her new teacher is now the best teacher in the world and Sissyboo continues to be very happy at school.

She has also managed to completely amaze me in the last few weeks and has reduced me to tears several times. Most spectacularly, this shy little girl (under whose modest exterior a secret exhibitionist lies) took part in a dance show, doing three different routines, in three dance styles in three constumes on a proper stage earlier in the month. OK, she didn’t remember every move. But the joy in her face was absolutely infectious and the confidence she displayed is something I couldn’t have mustered at her age and that I think any of her nursery teachers would struggle to believe she could ever have gained. Like her brother, she likes to surprise people.

And she has surprised me regularly over the past few weeks. I’ve made no secret on the blog that this anniversary season (from Boo’s birthday until the date 11 weeks later when he was supposed to be born) is hard on me. I am also a bit overwhelmed at the moment by a ridiculous workload and Boo battles on every front, it seems. I am exhausted and it shows, even though I try not to let it. Sissyboo doesn’t make a fuss about it or embarrass me by showing me she knows, but every week since Boo’s birthday in early April, she has left me odd little home-made badges with little messages on, or pictures telling me what an amazing mummy I am.

Yesterday, she drew a picture of her and me in a space rocket. It was accompanied by these words: ‘Mummy, you are amazing and my hero. I love you so much it wood take us up to spase’. Spelling isn’t her strong point. Compassion and empathy most certainly are. This is one amazingly lucky Mummy.

2. Nursery has successfully transitioned into nursery room. This means that for the first time since he started at nursery, he is with kids his own age and some nearly 12 months older. Of course, he can’t access activities without support or run around with his new friends. But he can hold his own and is happy. The kids look after him, bringing him toys and books while he is in his chair or playing games with him on his standing frame. It is amazing to watch. His former keyworker in his previous room is a big loss for Boo and us, but luckily she is staying on as Boo’s SENCO and is being very hands on, which is lovely. She said to me the other day that Boo’s absence from his old room has left a crater and the kids were really sad for the first two days and kept calling for Boo! Apparently they had to take some of them down to the garden to see him as they were worried he had disappeared…

3. Kit I finally have some cutlery (after finally getting some advice in an ‘urgent’ appointment with the OT about various things that was 3 months overdue) that I think might take the fight out of mealtimes. Boo can’t feed himself without hand over hand or elbow support as his arms won’t reliably raise to his mouth and even if they do he can’t twist his wrist to get the food off. His solution is to take his head to the spoon, fork, or plate. He’s not that bothered how he gets his food as long as he gets it. He is determined to feed himself and has started to refuse food at home and nursery if we feed him. Anyway, so now we have some lovely plastic curved cutlery and some great scooping/high sided plates which I think might be just the thing. I’ll let you know.

4. Running I am in training for a half marathon in September to raise money for an organisation that has helped us a lot since Boo’s birth. I am very time poor, unfit and my back is not in a good state. But this week, so far, I have somehow managed two 5 mile runs. I can’t say they were easy or even felt that good, but it was terrific to clear that hurdle and I am determined to do this. I have also raised several hunderd pounds already in just a few days!

And finally in good news:

5. Boo just keeps going from strength to strength. Yesterday in Portage he tried, unprompted, to say ‘tiger’ and said ‘bear’, ‘up’, ‘o’ for ‘go’ and the pet name the kids give to my Dad. If he says it to my Dad this weekend I predict gallons of tears. Oh and very excitingly, we have a walker on loan to try. It’s very early days, but expect a post on that soon…

So over to you. I hope you have lots of good news in your life and would love to hear it in the comments below.

Love

Mrboosmum

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Da-dah!

It’s been a hectic week. Lots of appointments, lots of work, writing letters of complaint to our PCT, lots more appointments, lots more work, and writing another letter of complaint. In the midst of all this, catching my breath is sometimes a real act of will. These are the weeks when it’s hardest to see the word for the trees, to see the real progress that Boo is making.

But it is there. It is. Take his arm and hand function, for instance. I am fixated upon Boo sitting independently. I cannot wait (what am I saying, I’ve been waiting nearly a year) for him to do this. It will make such a difference: to his perception of the world, to his independence, to how others perceive him, and to my breaking back. But he’s still not quite there. He’s been getting closer for ages and it’s so frustrating in these (I hope) final stages. When I was expressing this frustration to his physio yesterday she helped me see things differently: ‘Well you know why he’s still not there yet, don’t you? It’s because his hand function has improved so dramatically. Sitting and moving his arms is tough for him. If he were sitting independently now, he’d likely be propping using the stiffness in his arms and unable to use his hands. Much better this way round.’ Indeed. Of course, she’s right.

But there is one glimmer of progress that even I can see this week. Actually, it’s been developing for a few weeks, but I’ve been too nervous to blog about it in case I’m wrong or jinx it somehow. This week I feel confident enough that I am not deluding myself.

I think Boo is starting to try to say things.

At his age (17 months actual, 14.5 corrected) Sissyboo was talking in sentences. (How many times have I wrote variations on that sentence since starting this blog?) I know she was ahead of the game, so I haven’t been too worried about Boo’s speech. His developmental consultant wasn’t either, but referred us to speech and language because his brain damage and seizures mean he is high risk for cognitive delay and problems and there is a good chance of minimising the effects of these with early intervention. (8 months on we are third on the ‘urgent’ SALT waiting list!) The Grumposaur has been much more worried about Boo’s speech than me. I figure if Boo can understand us, we are onto something good. And although sometimes I worry I’m deluding myself, Boo clearly knows his name, all of his family member’s names, the names of his keyworkers at nursery and evidently understands words including ‘milk’, ‘lunch’, ‘bath’, ‘no’ (although he clearly thinks it’s a negotiable term) and various others.

But what has slightly worried me is that Boo hasn’t gone through that ba-ba-ba-ba babbling stage babies do from 6 months onwards. He vocalises. A lot. And has lots of vowel sounds (oh, ooh, ah etc). And I never feel like I’m in much doubt as to what he wants. But no babbling.

Until the last few weeks that is. Now we have a range of consonant sounds too. He makes a sound which remotely resembles his sister’s name, and seems to say ‘hiya’ from time to time. We really weren’t sure whether we were hearing what we wanted to and making a mountain out of a mole-hill. And then he started with ‘da-da’. It sometimes comes out ‘a-da’ or ‘and-a’ but we think it’s ‘da-da’. He usually says it when his dad’s not there. And he will copy me (not a hundred per cent reliably but pretty reliably) when I make the sound to him. His voice, like his temperament, is soft, gentle yet excitable.

When he was lying there in that incubator last April and May and I thought about our future, I didn’t usually imagine him walking or crawling (the stuff of some of my most vivid and sometimes distressing dreams now). No: I imagined a toddler him snuggled up against me on the sofa, looking at pictures of him in the NICU and me talking to him about how amazing he was and how far he’d come. And then I imagined him talking back to me. Asking questions because he couldn’t remember any of it.

Like my son, I don’t want to speak too soon, but I have a little fluttery feeling in my stomach telling me that this dream might actually come true. And it is music to my ears.

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