Monthly Archives: December 2013

A Good News Year (or Good News Friday #37)

 

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I missed Good News Friday last week in the whirlwind of finishing work (well, sort of, it’s never really done or entirely left behind), school ending for the term oh and a series of frankly scary panic attacks occasioned by the run-up to the anniversary of Boo’s infantile spasms developing.

Let me start off by saying that I seem to have been worried unnecessarily about that and the culprit for Boo’s behaviour seems embarrassingly benign. Yet as Boo’s consultant said to me, in a welcome moment of empathy on the phone last week, it isn’t quite true to say that I was worrying unnecessarily. I was worried because I am his Mum and we have been through so much in the past 20 months and my worry has in the past helped get him urgent treatment for various conditions. Worry  is as much the job of a parent as love. And the worry (and the love) multiplies significantly when your child has additional needs and complex health problems.

I wasn’t going to argue with him. This has been one heck of a 20 months. The last 12 have been even more challenging than the first 8, and I didn’t think that was possible, to be honest.

But when I think back to where we were 12 months ago, I realise how much good news there’s been and how many things we have to be grateful for.

So in the spirit of the season, here are my good news highlights for 2013:

1) We’re still standing. I have to say that there were moments when that wasn’t a given. There have been moments of real sadness and fear (especially last Christmas when his epilepsy was diagnosed) and the challenges of being in near isolation (because of dangerously suppressed immunity) on 3 hours sleep a day for 2 months when he was on high-dose steroids. But we got through it. It hasn’t always been easy and I have relapsed a bit in recent weeks but we are stronger than we thought. I am stronger than I thought.

2) Control of Boo’s seizures. Like much of our good news, I write this with a strong sense of how provisional our life is. Things can change. They do. Often. But the good news is no less good for that and this is a biggy, so I am going to celebrate it even if you’ll excuse me for crossing my fingers as I type. As far as we can be certain, Boo has had no seizures since the first day he went on high-dose steroids in mid-January. Much is unknown about infantile spasms, that most ‘catastrophic’ of seizure types. But early effective treatment is clearly a good thing for long-term outcomes and we are so grateful that he was diagnosed a few days after they began and that the steroids did the job.

3) I ran a half marathon. Let me type that again. I ran a half marathon. I still can’t quite believe that I did this. After having Boo I was unfit, overweight and exhausted by the stress of prematurity and life in the NICU. But I was also grateful that he had been saved. That he had come home to us and I wanted to do something for Bliss who do so much to help children in special care and their parents. Nothing I could do would be equal to my gratitude and nowhere near equivalent to Boo’s struggle to survive and thrive. But, I reasoned, a half marathon would push me (a non-runner all my life) harder than I’d ever pushed myself before. Of course, I didn’t know just how hard it would be until the sudden misery of the onset of Boo’s spasms and all that came with it. How I ran it, while acutely sleep deprived, depressed and breastfeeding, if beyond me. Somehow, I managed. Recently, the running has slipped by the wayside and has been sorely missed. Next year I plan to start training again, and have some races planned (including another half marathon, this time in my home town in September). My goal is to do a full marathon in 2015. Watch this space. I will do it!

4) Returning to work is the main culprit for my lack of running but it was a huge personal milestone for me and has to be on my good news list for the year. I had to delay my planned return for many months because of Boo’s epilepsy and the logistical and health problems (for him and me) it caused. It hasn’t been easy being back and new challenges lie ahead on that front from January, but for now work feels mostly right and it has brought a different structure to the day-to-day, much-needed financial stability and a bit of head space. A bit of time to be the bit of me that isn’t a parent or carer. I nearly lost her for a while.

5) Getting help. Reaching out to accept help from others is not something that came easily to us at all. It still doesn’t, but as a family we have needed all sorts of support this year. A kind GP who saw me last year, for instance, arranged for me to have a short course of cognitive behavioural therapy to help with the severe depression and anxiety that began early in the year. And then Home-Start came along. I want to write a separate post about my mixed feelings about our volunteer visiting us for the last time last week. But for now let me just say what I’ve said on the blog before. Home-Start is amazing! They extended help and friendship to us. Our volunteer gave me a couple of hours of near peace once a week. To drink a cup of coffee while hot. To catch up with the endless medical admin or do laundry. She put me in touch with a local and marvellous carers association which helped us with our DLA application and which has been invaluable for buying much-needed equipment (like a specialist car seat and wonderful but extraordinarily expensive activity mat). And latterly, and this is what I am most grateful for, our Home-Start volunteer had Boo for a couple of hours a week so that I could spend time with Sissyboo, who has been through so much in the past 2 years and who misses a mummy who has to keep going to hospital and doing therapy with her brother on a daily basis. As I said recently on the blog, I never thought mine would be a vulnerable family, but we are, nonetheless. And the kindness and help of others has helped us to be more robust and happy. Thank you.

6) And speaking of Sissyboo… What can I say? I hope this is evident from the blog anyway, but I’ll say it again: she amazes me. Every day. Dealing with Boo’s hospitalisations and an utterly wrecked Christmas last year was as big an ask as dealing with her brother’s unexpected birth at 29 weeks. If anything, it was harder for her (for us all) as it came out of nowhere. Then she had to learn what she already knew but didn’t quite want to believe. That her brother wouldn’t get better and will never catch up. That he has cerebral palsy. She frets about him. She worries for his future and wants it to be typical. Like hers. But for all this, all of her interactions with him are characterised by happiness, fun and love. I have never seen two children adore each other as much as the Boos. Her acceptance and love for him know no bounds and I have learned so much from her. Her brother is one lucky boy with her watching his back.

7) Battles won. If you read the blog regularly, you’ll be familiar with our struggles to get on waiting lists and move up them and the multiple administrative cock-ups and financial pressures that left him at risk of scoliosis. Two formal complaints, many months and floods of tears later and we are getting there. Boo now has the specialist seating he needs at home (although the OT has slightly broke his Bee seat in a  review last week) and at nursery and also has standing frames even if we have a 3-month wait to get one set up. The improvement to Boo’s quality of life is fabulous and may prevent some of the surgeries that often go hand-in-hand with cerebral palsy. We have other battles to fight (getting an adapted buggy and then the big one: statementing and schooling). But we’re on our way. And have learned a lot in the process.

8) Even without equipment though, Boo is progressing. Glacially, but in the right direction. And in Boo Land we celebrate each step forward. Here are some of the things Boo can do at 20.5 months, 18 corrected. They may not be news in everyone’s worlds, but they’re huge in ours.

– Boo has great eye contact, an infectious and hilarious laugh. He loves people and wants to play with children and grown-ups constantly.

– He babbles (although without some sounds) all the time and especially in response to conversation. He can say (although not always distinctly to others) ‘dada’, ‘teddy’, ‘again’, ‘egg’ (favourite toy), ‘hiya’ and a version of his sister’s name. ‘Yeah’ is coming. He understands much of what we say, we think, and can point to flashcards (when offered 2) to identify a nominated object. We are working on widening his vocabulary and moving to 3 card choices and more complex formations (‘the boy sleeping’).

– Boo will listen to and be completely engaged by stories for at least 30 mins at a time.

– Boo has a pincer grip. It is not 100 reliable (far from it) but it is there in both arms and intentional.

– His arms and hands remain very stiff but he has considerable voluntary movement in both. He can grab many objects and manipulate carefully chosen ones well to play (banging a drum etc).

– Boo can roll front to back and from side to front. Rumour has it he has done back to side at nursery, but I’ve not seen it.

– When you eliminate the tone in Boo’s hamstrings by having him sit on a box or cross-legged he can sit for up to 1 minute or 30 seconds respectively. If he uses his arms for anything other than propping (which he is now quite good at) he topples. But it’s coming slowly.

– Despite the wibbliest (technical term) trunk Boo can pull to stand from box sitting using a ladder chair.

I want so much more for him, but I am so proud of what he has achieved.

9) Blogging has been the big revelation for me this year. When the year began I had no idea I would start a blog and the fact that I still write it amazes me. The fact that anyone reads it amazes me even more. The blogging/Twitter community has been fabulous. I have received all manner of support and information. I am a happier and better informed person for blogging. I have come to know and befriend many tremendous people with lives like our own and many with very different lives. I have even got to meet a few of these wonderful people, including Sarah from First Touch NNU (whom I am proud to call a friend) and Jennie at Edspire, whose blog has been such a lifeline to me. I haven’t always blogged as often as I’d have liked, but for now I’m determined that the blog is here to stay. I can’t imagine life without it.

So that’s it. Our good news highlights for the year. I hope there have been many for you too.

 

Mummy Interrupted

Today I should be finishing up work for Christmas (well, sort of – I have lots of work-related reading to do by the beginning of January, but not too much). I should be excited about getting Sissyboo at 13.30 as she finishes school for the term. I should be looking forward to a Christmas together all four of us, hopefully without the dramas and hospitalisations that ruined the last one. I should be writing Good News Friday. 

Instead, I  am sat here waiting for a consultant to call me back, writing a blog post, crying my eyes out and with a dry mouth and shaking legs. I am having a 4th panic attack in 3 days and I am miserable and scared.

The cause? I don’t quite know for sure. I have been having a hard time all December as we approach the anniversary of the onset of Boo’s infantile spasms. This anniversary is proving at least as tough as his birthday and due date anniversary. In fact, it’s much worse as I remember that the spasms can come back or morph into another form of epilepsy that can undo all the work we’ve done on his cognitive and physical development. That can take me back to the brink of severe depression and acute anxiety that made life so difficult between January and May. I am always in a state of alert. Now, I’m in a state of hyper-vigilant panic. 

The fear is crippling. I can’t talk or think about anything else. I am a wreck. I had started to feel better a week or so ago and thought I was coming out the other side of this mental health blip. But then two nights ago Boo started uncontrollably screaming and writhing while we were trying to get him to fall asleep. 

Bedtimes are never happy occasions in this house. Boo has fought sleep and his contorted body that he can’t move as he’d like to since birth. But this is different. He is writhing and screaming for a good hour or so as we hold and comfort him. We can distract him by giving up or showing him a toy but the minute we try to settle him again, his legs start coming up abruptly into a frog-like position and back straight again and the high-pitched screaming returns. I don’t know if the legs are caused by the crying/distress or vice versa.

I live in fear the spasms have returned.

I should say that what Boo is doing at bedtime looks nothing like the spasms he experienced almost exactly a year ago. He had those only on waking. They were a rhythmic jerking movement from stomach to head. What I am talking about now only happens when he is falling asleep (although that is a common time for IS to occur) and he is pulling up him legs to his tummy (not a particularly common seizure presentation as I understand it). There is no stomach movement, no eye movement, no regular rhythm. He is not returning to normal between movements. He is just plain angry and incessantly moving. Am I being paranoid?

I think I am. He may just be teething. He has had two teeth coming through for weeks (you can feel the point of one under the gum.) He and teething get on about as well as he and sleep. No teething experience he’s had so far has been pleasant for any of us.

Then there’s the fact that I am in a state of high stress (not helped by the OT breaking Boo’s long-awaited Bee seat yesterday when she came to do a review – and the Jenx factory is now closed for weeks for Christmas, or the fact I feel I am very behind with my work and so many other things). I realise that I am probably making the ‘evidence’ fit the scenario my disordered mind has conjured.

I keep saying to myself that it is no more likely his seizures will return this Christmas as next March or never. It’s just a date. But I can’t shed the fear. Even though my instinct is that this is nothing serious. (That was not my instinct with the spasms – I knew what they were even when no one around me would believe me until they saw the EEG results.) 

Perhaps the consultant will call me back. Perhaps he will put my mind at rest. I have never wanted to be perceived as a bothersome, paranoid parent more in my life.

I want things to get back to normal. Our normal is not most people’s, though I know it is so much better than many others’, but it is ours and we can deal with it. 

And I so want everything to be OK. Two nights ago, Sissyboo was crying when she remembered that Mummy and Boo spent most of last Christmas in hospital. She begged us to promise it wouldn’t happen this year. We said we were as sure as we could be that it wouldn’t happen again. But we can’t promise anything, can we?

Please let this be a blip. Please let the seizures stay at bay. Please let this Christmas be a healthy and hospital-free one. We would all gladly send all our presents back if we knew this could be true.

 

What can’t be said

There are all sorts of things I never thought would happen to me. At the age of 15, when I overwore my contact lenses out of sheer vanity to the extent that I gave myself an eye ulcer, I never thought I would ever wear glasses in public. (Oh to be 15 again…) I never thought I’d get excited about a condensation remover or a steam cleaner, although i did just that at a friend’s house yesterday. I don’t think I ever thought I’d have two kids, if I’m honest. And when I did start to imagine that that might be possible, I never thought they’d be so beautiful or so funny.

I certainly never thought, after having one healthy, term baby that I would have a little boy at 29 weeks gestation. I never imagined that he nearly wouldn’t make it. I never imagined myself with a disabled child. Now, of course, I can’t imagine my life without him and all the joy and worry he brings. And I contemplate without fear all sorts of things I couldn’t bear to consider just a few months ago: that he might need a wheelchair or that he might not be able to attend mainstream school, for example. Of course, I would love him to be able to walk. I would love it if he could attend his sister’s infant school. But mostly, I just want him to have a life that is safe and exciting and that lets him grasp every opportunity to achieve his hopes, dreams and his potential, whatever those things are. Of course, he can do these things in a wheelchair and having attended a non-mainstream school.

But there are still some things I don’t like to contemplate and one I have had to face head on in recent weeks: Boo might never talk.

This is something that, honestly, had never occurred to me before we started Speech and Language Therapy in September. But his therapist wants us to be prepared for all eventualities. And she has talked to me a lot about communication devices, learning Makaton (not easy with Boo’s hand function as it is) and PECS. She has mapped out a non-verbal future for Boo, with communication frustration and behavioural problems, and I don’t like it at all. I feel as if a little piece of me has died.

You see, words are so important to me. I am a great talker and writer and when I’m not talking and writing I spend hours analysing the conversation and writing of others. When Sissyboo was young, I longed for the day that she could speak. Now, she rarely stops, and while this can be frustrating when you are trying to get her to do something other than talk (like eat, drink, go to the loo or brush her teeth), I never want to shush her. I will never tire of hearing her beautiful voice.

It never occurred to me this might not be possible with Boo? That we wouldn’t be able to talk like I talk with his sister

Why, I keep thinking? Why didn’t I entertain this possibility (no matter how unwelcome it might be)?. Well, a bunch of reasons, I think. First of all, he’s still so young. At 20.5 months actual, Boo is still only 18 months old. And although he hasn’t got a conventional babble he has had a range of sounds and vocalisations for months and months now. His sister was a talker from an early age, but lots of children his age aren’t reciting the Gettysburg Address, are they? Boo is a noisy bear and he has odd words: he says ‘egg’, in homage to his favourite Fisher Price toy; ‘dadda’, although this comes and goes and a version of his sister’s name. He isn’t totally consistent in his use of these words, but they are there.

And I suppose I haven’t worried about his speech much because I don’t feel I ever don’t know what he needs or wants. He smiles for ‘yes’ and turns his head for ‘no’. And he understands everything I say to him. I’m sure of it. If you ask if he wants a book, he looks where his books are. If you ask if he wants milk, he looks at the microwave for it to be heated. If you say the names of family members his ears prick up and his face lights up. He knows what’s going on even if, as I wrote on the blog the other day, he doesn’t know what a helicopter is (an occupational hazard of playing with physio- and sensory-friendly toys that a little boy with a four-limb motor disorder can hold).

I don’t want to dismiss the therapist’s concerns. Far from it. I have really taken them to heart in the last few weeks and have been quite depressed at the thought that I have failed him in spending so much time on physical therapies that I have neglected his cognitive development, although I read to him every day and speak to him constantly.

But I am not giving in on this. Us Boos don’t, as a rule. And we may be down, but we’re not out yet. I am prepared to accept now that a non-verbal future may await Boo and I am starting to learn more about what that might be like and how other parents support their children in communication when speech is challenging. But I am also trying to incorporate as much speech therapy into the day-to-day, bearing in mind all his other therapies and appointments and the fact that a day is inconveniently short at just 24 hours. (Sleep is such a nuisance, don’t you think?)

So here are some things we’re doing as well as reading to him:

1) working towards a communication board. We use laminated cards with symbols for yes and no on and several times a day ask Boo to make choices of the cards to communicate sentiments to us. This seems to be going well. The next step is to think of other things we want him to be able to communicate (drink/more etc.) to make a bigger board.

2) using various iPad apps to communicate understanding of where certain objects are etc.

3) using flashcards to broaden his vocabulary (yes, I will have to get a helicopter one) and to get him to demonstrate one-word cognition when showed three pictures

4) singing songs and pausing before the last word of a line to encourage him to join in (a favourite routine of his conductive education sessions, although one more liable to instigate giggles from him than actual words).

5) talking, talking, talking

Is this enough? I don’t know. But it’s a start.

I’ll let you know how Boo progresses in his communication on the blog. But in the meantime, I would be very pleased to hear from any of you about any tips or tricks you have to encourage your child’s speech if they have additional needs. This is an area I feel I have at least as much to learn about as Boo himself.

Good News Friday #34, #35 and #36

Never mind Bad Santa, I have be a bad blogger recently. Good News Friday has been neglected again. So here’s another 3-in-1. How Christmasy!

It’s not that there hasn’t been good news, but we’ve had to wade through a bit of treacle to get to it and by the end of the week, my energy levels have been zapped and I’ve let things go. But we’re still standing and things are on the up, so here’s the edited highlights of our past three weeks:

Breathing sound

The main culprit for no GNFs for the past few weeks was Boo getting ill. We don’t know if it was RSV again (not much point in testing really) or whether a virus agitated the bronchial hypersensitivity that is the legacy of the RSV and bronchiolitis he caught last year while in hospital for his infantile spasms. Whatever it was, it made him rasp like something out of Dr Who and frightened the heck out of me. We were on permanent, blue-lip, A and E run alert but, mercifully, that didn’t happen. A course of steroids, an emergency inhaler and one he will now have to take daily for the foreseeable future did the trick and he is breathing beautifully again. He is sleeping better (2 nights slept through in the past week, so finger crossed) so I feel a bit more human. Thank goodness we got off so lightly!

Sitting pretty

A few weeks ago, I posted a pic and few words about Boo’s Jenx Bee seat. It is a revelation, I tell you. We now have somewhere where he can sit posturally supported and safely. He had totally outgrown his Cushi Tush by the time we got it and we were getting very worried about scoliosis. Hopefully, this will stop it. I can put him in it and know he’s not going to throw himself back and bang his head or tip to the side (though he is squidgier – that’s a medical term, OK? – on his right side than his left and leans just a little bit sometimes even in this seat).

That said – even if we ignored the OT’s repeated warnings that we are never to leave him alone in it for a second, so don’t think of suing them if we do and he has an accident – we can’t leave him to play independently in it. You see, Boo likes to play his own games but with adults at his beck and call. The yellow and black edging on the play tray isn’t enough to stop toys rolling off and despite the wonders of Dycem, it doesn’t help all that much to keep things in place as Boo tries to eat it. So he’ll play for a bit and then he’ll chuck his toys on the floor, flash you an innocent ‘Moi? Sorry‘ face and wait for you to pick them all up and then the game starts again.

The new news on the seat front is that a second has now arrived and been set up at nursery and we can’t wait to see how it revolutionises things for him there. One of the brilliant things about the seat is that it is fully height adjustable, so it can be as high as our dining room table or as low as the nursery tables in the toddler room, so he can sit at eye-level with his little friends. I can’t wait to see him in it with them at his Christmas party tea with them next week.

And then there’s the sitting that doesn’t happen in the seat. This is something I am nervous about blogging about. I have a real fear of jinxing things, which is odd, as I was never superstitious before having Boo. I suppose it’s a survival mechanism. I don’t want to get too excited about anything because (and I say this without a shred of self-pity) every time I have in the past 20 months, it has come back to bite me.

But, with my cautious hat on. I think Boo’s sitting balance is getting better. He is propping well and saving himself when he topples more reliably. OK, he can’t sit straight-legged. We have to eliminate his high hamstring tone by having him cross-legged or box sitting, but if we do, he can sit with minimal support for a long time and play. With no support, he can manage a few seconds, sometimes longer.

It is a start. Things might deteriorate with the next growth spurt. I won’t allow myself to get too excited. But I can’t help but be a bit excited. That in this area things are moving in the right direction. That he might, one day, sit independently. Please, let this happen…

Sissyboo 

I can’t leave off without writing about the fabulous, nearly-exploding-with-pre-Christmas excitement Sissyboo and her wonderful sense of fun. I blogged about the amazing way that she has got through these past few difficult months this week and if you haven’t read it yet, you can do so here. Today I am off to see her school nativity (she’s a centurian) and then to her end-of-term ballet and modern dance shows. I couldn’t be prouder. Boo is one lucky boy to have her in his corner.

Christmas

And some of her enthusiasm is rubbing off on me. I wrote a few weeks ago about how I wasn’t looking forward to Christmas at all, and I am still very up-and-down about it (some weird PTSD-like fear of a repeat of last Christmas and the diagnoses and hospitalisations that ensued) but I am facing-up to Christmas. I’ve got almost all of my presents, written most of our cards and put the decs up. I made paperchains for an hour with Sissyboo yesterday and felt pretty festive when I took her ice-skating last weekend.

I’m starting to allow myself to think that maybe, just maybe it will be OK this time. I hope so.

OK, so over to you. Please, please, please, share your good news below or on Twitter or the blog’s Facebook page. I love to hear from you.

My Little Star

Here in Booland, the littlest Boo is playing the two steps forward one step back game again. I should be used to it by now, but the new curve ball is the whole physical versus cognitive stand-off we keep facing.

We had back-to-back appointments on Monday: Speech and Language and then physiotherapy. Physio went very well, but then his therapist has seen Boo since 4 weeks before he was supposed to have been born. She knows him better than anyone except us and claims each new development, however minute, as a victory. I usually leave feeling pretty content about things. But SALT was not so good. It is never good. But then its only our third appointment with Boo’s language therapist and, to be honest, lovely though she is, I don’t think she has the measure of him yet. She clearly sees special schools, communication aids, and indistinct (if any) speech as his destiny. If it is, then so be it. But I don’t see that yet. I hear ‘daddy’, a version of his sister’s name, ‘oh dear’, ‘eggs’ (his favourite toy) and ‘yeah’. I see the cogs of cognition turning. He is still so young and he understands (I know it) so much. I’m still happy to wait and see. I have not lost hope.

But I admit, it’s a bit hard to make sense of this new development, of appointments (like the ones we had when he was very little) that focus on what he can’t do rather than what he can and that offset the gains he’s making. So this week, I want to focus my Small Steps post on just one of the amazing achievements of Boo’s big sister over the past few weeks.

Sissyboo is exhausted. She doesn’t know it or at least she won’t admit it to herself. But it’s true. Her eyes may be wide with excitement about Christmas and presents and crafts and sweeties and nativity plays and the end of term, but they are also drooping at the end of a long term full of fun and learning and all the laughs and trials that come with living with her adored little brother.

I’ve written before about how much she’s had to take on this term. More homework. The more structured academic focus of Year 1. A new teacher. Her best friend moving schools. Her brother’s diagnosis. The words ‘cerebral’ and ‘palsy’. Equipment for her brother colonising the house. It’s been hard. And at times her confidence has been really knocked. She had tummy aches before going to school. She started waking at night and wetting the bed. She wanted more cuddles. She asked if her brother was going to die. She lost a little piece of her childhood.

But somehow she’s got through it and with style.

This week she deserves a medal. In fact, she deserves an Equity card. On Monday she did a short performance at the afterschool drama and vocal club she goes to. Today (although I haven’t yet seen it), tomorrow and Friday she is in the school nativity (and has had to learn about 4 songs, Makaton actions and a few lines) and on Friday she is demonstrating all she has learned in her two Friday afterschool dance classes: ballet and modern.

Now before I go on, please rest assured, I’m no pushy or stage mom. Sissyboo does these things either because she wants to (dance was definitely her idea) or, as in the case of drama, because I need an extra hour of childcare on a Monday and I thought it might help her confidence.

You see, Sissyboo can be such an extrovert. I have a video on my phone from when she was 2 dancing down the street and swooshing her skirt while signing ‘I’d do anything’ from Oliver!. But this is the same girl who will cling to my leg when visiting a friend or relative she hasn’t seen for a few weeks (or even days). She can be cripplingly shy or the centre of the party. Sometimes there’s no obvious rhyme or reason to her mood, other than that she’s her mother’s daughter.

I hoped drama would put her on more of an even keel and make her feel more comfortable in different situations. But I haven’t had much sense of how its been going. When I’ve asked her about the club this term I’ve got the usual ‘good’ and little more. So when I went to see her group do a series of vocal and physical warm ups and a short play with songs earlier this week, I didn’t know what to expect. I just wanted her to feel at home. To enjoy herself.

What I saw completely exceeded my expectations. She joined in with the biggest smile on her face. She sang songs loudly, said her couple of lines without looking at her toes. She was really good at it: a mean old troll and then a jolly old pirate.

But more to the point she was happy. Happy and confident. I know that wouldn’t have come naturally to her and I know her lovely teacher must have played a big part in making her feel like this. But it’s also come in large part from Sissyboo herself. From her character. Her love. Her guts.

As we approach the end of term, I see a confident, happy and brilliant little girl who has got through a difficult few months with grace and determination. And on Monday afternoon, a very proud Mummy had a very vivid demonstration of where her brother gets it from.

 

a4641-smallsteps

Home straight. I Wish…

Two weeks to go. Two weeks until I get 11 days off for Christmas. And despite being nervous about Christmas (an irrational PTSD-like fear of a repeat of last festive season’s new diagnoses and hospitalisations), I can’t wait. I want to spend time with my family and not working or in appointments. I want to kick back.

I am utterly exhausted.

Nearly there. Sure, there’s a mountain of stuff to do before then (cards, Christmas shopping, deciding what to cook to entertain guests for Christmas lunch) a million things at school, a stack of work so high I can’t think about it without feeling sick. But only two weeks to go. I must be on the home straight. Right?

Wrong.

How can you be on the home straight when home is never straight forward?

Today I have been to two medical appointments for Boo. SALT (or speech and language for those not as thoroughly institutionalised as me) and physiotherapy. I left the house at 08:30. I got back at 11:55 after dropping him off at nursery. I hadn’t eaten at all today, or drunk or peed since 06:30 this morning.

I left the appointments with lots of homework (apps to locate and download, products to source, photos and captions to write for nursery) and a tonne of guilt about all the things I haven’t done with him or helped him achieve. That’s a post for another day this week, but in short SALT makes me feel like I have let Boo down in the area that as his mum, as someone who works in education, as an avid lover of words, I should have helped him most: communication. Boo’s comprehension about transport was tested today. Could he find the train, the boat, the helicopter? No. And you know why? Because it dawned on me that he doesn’t play with trains, boats and helicopters. Because he only plays with toys that are physio and sensory friendly. That he can actually hold. Because I have cared more about trying to help him reach and grab and get trunk support so that one day he might sit than to widen his vocabulary, despite talking to him constantly. I have never told him what a train is or shown him a helicopter. I feel rotten. I am a bad mum.

And I am a bad working mum. Because today I am or should be at work. OK I worked 3 hours last night because I knew I had appointments this morning, but I didn’t know I would get home and open the washing machine door and flood the kitchen because it has broken for the third time in 2 months. And now I have 2 hours before Sissyboo’s drama club Christmas show and I should be working as hard as I can now in the hopes I don’t have to work from 19:30 until 2:00 again. In the hopes that I might actually get some sleep.

But instead I am writing a blog post. Because I feel things are about as far from straight or straightforward as they could be and maybe writing about it will clear my head. Because I feel that life is unbearably hard sometimes. Even impossible. Most days I can cope, but today I can’t. Today I just want to sleep for 2 weeks and for Christmas to happen with or without me.

But I can’t do that, can I? I need to be more like Boo. To not give up. To keep on at things just like he did through two difficult appointments this morning.

I am tired, but I am also the grown-up. I have to keep going.

Onwards!

I sit ready

[Sung to the tune of ‘I hear Thunder’] ‘I sit read-y. I sit read-y. Look at meeee. Look at meeee. I am sitting read-y. I am sitting read-y. Look at meeee. Look. At. Meeee.’

This is one of several songs that play in my head on a loop at the moment. It’s one of the rhymes we sing in Boo’s weekly conductive education classes. I must confess it’s not my favourite. I actually quite like the one about standing like a Jack in the Box and not sneezing. (You think I’ve gone mad, don’t you, but this is the strange world I inhabit these days.)

These songs have become very important to Boo. They are ways of linking cognitive responses to physical actions. So the Jack in the Box song is a standing song. It acts as a verbal cue (he hears it and knows to stand) but it’s also a form of distraction that encourages Boo and his classmates to concentrate on and be entertained by the song while holding a physical pose that doesn’t come naturally or moving in a particular way. Boo stands for a lot longer if you sing the Jack in the Box song than if you don’t. It’s that simple yet effective.

But he’s not much of a fan of the sitting ready song, either. Why? Well, because it’s the conductive education equivalent of the song ‘Why Are we Waiting?’ It’s the an exciting toy will come your way soon or bubbles, or better still a biscuit or lunch, but not yet song. No you’ll only get the toy, or bubbles or food if you are sat properly, feet flat on a plinth, upright on a regular wooden chair, with your head in the midline and holding rings or a bar with one hand to aid your balance.

Waiting is hard enough when you’re a kid. Deferring gratification is not a skill that’s easy to acquire. To be frank, I know many adults who still haven’t learned that particular life lesson. But when you have to learn to hold off on what you’re waiting for with optimum posture while your brain is sending you wappy signals, well … this a truly Herculean endeavour. Imagine you trying to rub your tummy and pat your head. Upside down. In water. Yes. It’s something like that for kids like Boo.

I think I know how he feels. The waiting game, I’ve found, is an endurance sport and one of the hardest aspects of our new life since having Boo. Don’t get me wrong. I could wait for years for him to sit, crawl or walk if I knew he would be able to some or all of those things at some point. But we don’t know whether or not they will happen. We will only know when they happen. or if they don’t.

I’m not good at being patient. I want to make things happen and I work so damned hard to try to make things happen. But I know that for all our collective efforts we only have so much control over Boo’s future. And I hate that. I really hate that.

But as I was sat next to Boo in conductive education today (with a very hungry tummy after more than 2 hours of really hard work sat waiting for his dinner, sitting in a position that was forcing him to go to war with his own brain) that in this, as in so many things, I have much to learn from my little boy.

He wasn’t comfortable. He would have much preferred to have grabbed his food off the lunch trolley than sit there as still as he could to the ‘I Sit Ready Song’. But he did just that. Because he has learned that he would get what he wanted. Eventually. If he was patient. If he did the right things. Things that just a few weeks ago he couldn’t do at all. Like twisting his wrist against the dystonic impulses he has to grip a pole to keep his balance. Like sitting with feet flat on a box. Like sitting on a wooden chair with no lateral or trunk support. Things I never thought he would be able to do.

And from his point of view it was worth clearly it. The struggle. The wait.

Sure he didn’t know quite what he was going to get at the end of the wait (today it was sweet and sour veg, and I think he was secretly hoping for macaroni cheese – he always wants macaroni cheese) but, you know what? It was fine. The veg got hoovered up all the same. And he left the session full and happy.

I’m not one for sentimental metaphors. Someone quoted Forrest Gump to me after Boo’s birth and when they told me that ‘life was like a box of chocolates’ I did secretly want to give them a brisk kick in the shins. Nevertheless, Boo’s life and how he approaches it has totally changed the way in which I see and navigate my own. And like him, I promise to be both patient and tenacious in the hopes it brings us what we want and he deserves.

So maybe it’s not such a bad song after all. OK, Boo. We’re in this together and if you can do it, so can I: I sit ready. I sit ready. Look at me. Look at me. I am sitting ready. I am sitting ready. Look at me. Look. At. Me.

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