Tag Archives: developmental delay

Good News Friday #42: The First Straw

Well, we’ve nearly done it. We’ve got through the first week of our new routine with my two long commutes and a different work pattern. It hasn’t been especially easy, at times, not least because nursery called on Wednesday (when I was 65 miles away) to say Boo needed to go home as he had been vomiting. There was nothing wrong with him. His anti-seizure medicine makes him a bit nauseous and if he eats too close to having it (they gave him a second breakfast without telling me they were going to do that), he spits up. They still excluded him for 2 days even though there is nothing wrong with him and dealing with that has been difficult. But we coped and having had a rough start means we know that we can deal with things when they don’t go to plan, which is good news, in a perverse kind of way, I guess.

But I won’t say it’s been great. Bearable mostly. But very good in places, and there have been some very, very good Boo moments that I just have to share and which have made it all so much better.

1) New sounds: We have ‘Wuhs’ and ‘Bs’ here now. And most people seem to be called ‘Bob’ (which makes a change from ‘Dad’). (‘Bob’, by the way, is not as random as it sounds. It’s a version of one of his good friends’ names at nursery). We also have had a lot of in-context ‘yeahs’ this week and Boo even showed them off to his developmental consultant on Wednesday, which proves that sometimes, at least, he is happy to play the part of performing seal.

2) Appointments part I: Our first physio appointment for a month wasn’t great. I had hoped Boo would show his physio (one of his favourite people – and mine, I might add) some new tricks. No deal. He just sobbed uncharacteristically. We had no idea what was wrong with him, except that his OT was there too. He likes his OT, so it wasn’t anything personal, but he is a stickler for routine and context and I think, in his head, she wasn’t supposed to be there and he was confused. And then she pulled bandages around his middle in an attempt to see if they improved his trunk tone. It didn’t make her any more popular with him, that’s for sure, but it did improve his trunk control and with it his arm function in quite startling ways. So we have been referred for orthotics with a view to getting Lycra garments. The funding needs to be approved first and then we go on the waiting list, but this is a very positive step, I think, for Boo.

3) Appointments part 2: Our other appointments this week (Portage and the consultant appointment) went much better. We hadn’t seen the consultant for 9 months (she’s three months behind on 6 month reviews). She is lovely. She has this wonderful knack of accentuating the positive and was full of praise for all the things Boo could do. These are some of the only appointments we have when I walk through the door and feel happier than when I’m standing outside it. And I think it the good vibes rubbed off on Boo. The appointment was at the most rotten time of the day (tea time) and he went in 30 minutes late. He was starving and grouchy. He had been sent home from nursery and (like us) couldn’t really understand why as he was perfectly well. But once he was in the consulting room, he showed off right royally, as if to repay the faith the consultant had put in him in her positive take on reading through his biblical sized file before seeing us. I was so proud.

4) The first straw: And then we went to conductive education, which Boo loves. He had a great time as usual and participated in all the activities enthusiastically, watching his older classmates show off their new sitting and crawling tricks. Boo’s not there with either of those particular skills yet, but he doesn’t like to be outdone. So at his favourite times of the session (snack and lunch time) he decided to show what he’s made of.

He’d worked hard and he was thirsty by the time juice and biscuits came out. For once, I had remembered to take with me the therapy bottle his speech and language therapist had suggested we try him with to encourage lip closure and tongue retraction (although the latter isn’t really a problem for him). I must confess, I don’t use it at every meal and haven’t got one yet for nursery. You see, the bottle has a straw in it, and learning to use a straw is tough if you’re Boo. It’s a non-collapsible straw, which helps, but it’s also not fixed in the bottle, and Boo learned in about 30 seconds that the best game in the world is not using the bottle to drink out of, but to pull the straw up to irritate Mummy.

But we keep trying. A little and often, as is our way. But I was beginning to give up after 3 months of trying. I was using it at fewer meals, keen to get fluids in him and prevent constipation. But I said last week that I would take it to conductive education this week, so I did.

Boo walked over his seat (with a ladder back chair and arm splints and a bit of help, but you know, still, he walked) and sat down. He enthusiastically chose grape juice when offered that or water by his teacher. And then we sat down to drink. I held the bottle and was in the process of asking if we could have cup of juice made up too so he could get enough liquid inside him to hydrate him for the next set of activities when the usual 3 seconds of unenthusiastic straw sucking ceased.

And then I started talking to Boo and one of the other children before absent-mindedly saying ‘Gosh, Boo, you are a thirsty boy today, you’re wolfing that down’. What had I just said? I paused and did a double take. The liquid level had gone down an inch. An inch! And not down his front. He was sucking effectively through a straw. And it wasn’t a fluke. He did it again at lunchtime and tea time. He has learned to use a straw.

And once again, I realise that for all my research and my efforts as an amateur therapist, it’s Boo who does most of the teaching around here. It was as if he were saying don’t give up. Keep plugging away. Things will happen if you just keep trying. Noted, Boo. Noted.

OK, so those are our highlights from this week. I hope your weeks have been filled with good news. Do feel free to let me know what nice things have been happening in your worlds in the comments below. We love to hear from you!

 a4641-smallsteps

Advertisements

You know you’re a Premmie/SEN parent when…

magicmoments150x150_zps58f60c40

…you have more medical appointments in a week than hot meals.

…the guy who runs the hospital car park occasionally lets you park for free because he is worried about your bank balance.

…you can direct lost visitors to parts of the hospital people on reception have never even heard of.

…you are pleased your favourite syringe made it into the steriliser and is ready for use.

…you have a favourite syringe.

…you don’t just know how many mls of each medicine your child has daily but can convert it to mgs without thinking.

…you can say things like periventricular leukomalacia without tripping over a syllable or breaking into a sweat.

…you are mistaken for a paediatric consultant (this has happened to me: three times in two different hospitals).

…you can speak almost entirely in acronyms (PVL, IS, GDD, IVH, PDA, NEC, CLD, SEN, IEP).

…you use the term inchstones rather than milestones.

…you stop using the word normal (even with air quotes) entirely and say typical.

…6 hours sleep feels like winning the lottery.

…you can parrot huge chunks of ‘Welcome to Holland’.

…you don’t see a child with disabilities and think what’s wrong with them but notice their amazing smile or beautiful face or how funny they are.

…you see what a child can do and not what they can’t.

…you are pleased when dressing or undressing your child becomes a wrestling match because it shows they have the muscular and mental strength to fend you off (see Exhibit A below and I hope he’s not intentionally flipping me the V, by the way).

…the smallest thing (the opening of a hand, the mouthing of a word, an act of mimicry) can make you happier than you ever imagined possible.

…you are utterly floored when your child tries to wave at you for the first time in their life and nonchalantly transfers an object from one hand to another as if they’d being doing it all their lives. Both of these things happened today, and yes, I am writing this post with tears of joy in my eyes.

…despite all the heartache and anxiety you feel lucky and grateful every damn day.

I would love for you to add your own ‘Whens’ to this list. Please use the comments box below. I love to hear from you!Image

Truths my Daughter Taught Me

magicmoments150x150_zps58f60c40

Being the parent of a premature baby or one born with complex health needs can be a scarily infantilising process. One of the many things I looked forward to when pregnant with Mr Boo was not feeling as bewildered as I did with his sister. OK all children are different but their needs are pretty similar when it comes down to it.

Not so, I found. There were these whole other worlds of prematurity and special needs parenting I barely knew about. The folks there spoke completely different, specialist languages and were too busy to tell you where to buy a phrase book. You had to listen hard, intuit as much as possible and trust that they knew what they were doing. It felt like one long (oh, so long) first day at school, where you missed the security of life until that point and feared what stretched out in front of you. There were lots of rules to learn quickly and that lots of people around you already knew but wouldn’t tell you because they’d forgotten there was a time they didn’t know them. There was no playtime at NICU school and no gold stars for good behaviour. And just like school, the minute you’d finally got your head around something new, your teacher came along and told you about the next thing, and the one after that. And you never thought the holidays would ever come.

I hated being in this position. In my work life I’m the one who has to stand at the front of the room and impart information like I know what I’m talking about. I’m supposed to know the answers and people trust I have them even when I don’t. Not being this person was totally disorienting.

More recently I’ve been feeling child-like in a totally  different and much more pleasant way. I’ve similarly realised I’ve had lots to learn. But don’t you find your attitude to learning depends on who’s the teacher? And I have the best: my daughter.

While I was pregnant I worried a lot about the impact of a sibling on Sissyboo. She’s had Mummy and Daddy all to herself for many years (she’d be nearly 5 when he was born) and while we thought she was good at sharing and thinking about others, we also knew that behaviour on play dates isn’t a reliable indicator of how a child will be with a little brother or sister. It was going to be hard on her, we knew that. We had no idea how hard. No idea that her Mum was going to go to work one day and not come back because she was in hospital with her little brother who wasn’t supposed to be born for another 11 weeks. No idea that he would spend weeks in a box looking purple and alien-like without eyelashes or fingernails. That it would takes weeks to get him home. That when we did get him home we couldn’t go out much for fear he’d get sick from the world of germs. That he would, in fact, get sick and start doing funny hiccups or fits as she came to know them. That he would keep going back to hospital. That she would learn to do physio with him. That he wouldn’t grow up as she had done. That his birth would affect him and her for the rest of heir lives.

I don’t want to pretend that Sissyboo’s response to this has all been sweetness and light. She struggles, just as we all do. In the past year we have seen her have tantrums the like of which she has never exhibited before. She periodically stops sleeping for days at a time and wets herself despite having been dry since the age of two and a half. We worry about her constantly and want to support her as much as we can. She deserves better. I’ll return to her needs and this difficult question of sibling support in another post.

For now, though, I want to tell you about the amazing things. About how incredible my daughter is with her little brother. About how much she’s taught me and what an astonishingly kind and compassionate girl she has grown into.

Here are just a few of the things she’s I’ve learned:

1) Acceptance is child’s play: I’ve blogged a bit about this already but it bears repeating, if only to remind me of one of the most important lessons she’s taught me. Whereas I, for a long time, resisted the world we’d entered after having Mr Boo, Sissyboo quietly internalised it. When she plays mums and dads babies are born ‘way too early [shake of the head], silly things’ and stay in the hospital for weeks before coming home. All babies in this imaginative world have physio and take medicine. And if they don’t, they’re ‘a bit odd’. Older children routinely get ill and get better and do ‘amazing’ things like practise their sitting or swallow food without choking. Her sense of normality has been utterly recalibrated as if she knows normality is the most misleading word in the English language.

2) Acceptance is not the same as giving in: My main problem with accepting cerebral palsy, developmental problems and epilepsy (now largely overcome because of my daughter) was my mistaking accepting for acquiescence. And I am not prepared, on Boo’s behalf, to give in to these conditions. But what Sissyboo helped me to realise was that acceptance is not the same as giving in. We can accept but still be ambitious for Mr Boo. I think I told you before she calls ‘disabilities’ ‘abilities’ because the latter makes more sense to her given all that disabled people can do. Sure, Sissyboo knows other children her brother’s age (and much older than him) can do things he can’t, but she never questions that he will learn these things in time. Between her and me he has the most enthusiastic cheerleading team as he practises his physio and works on his Portage targets. ‘He will walk one, Mummy, I know it.’ When she says it, I almost believe her. If it was down to her and his willpower alone, it’d be a done deal.

3) Laughter is the best medicine: Mr Boo has a brilliant, throaty laugh that could melt the coldest heart. And he laughs a lot. But he never laughs for anyone like he laughs for his sister. He can be miserable as anything and she can make him beam. He can get frustrated at his inability to grab a toy or move forward on his tummy and she can turn his tears to chuckles in seconds and give him the guts to have another go. The NHS should hire her out. She’s the best therapist he has.

4) Love can bring about change. People say the silliest and most offensive things to families of children with special needs, and we’ve had an unfortunate run of these in the past few days. But if Sissyboo has her way, things will be different. Her compassion and a wisdom way beyond her years are apparent within seconds of talking to her about her brother. When I took Boo into her school, at her teacher’s request to talk about babies, I was nervous. Her teacher said the children were unlikely to want to know about his prematurity; they would just ask Sissyboo and I questions about looking after little people. The first few questions went from the banal (‘what’s his favourite pizza topping?’) to the downright awkward (‘what’s the difference between a girl and a boy baby?’) Then they got sticky: ‘my little brother’s older than yours and he’s crawling. Why isn’t yours?’ The teacher and I looked at each other wondering which of us should step in to protect Sissyboo by answering for her. But before we had a chance she stepped right up and said with unusual confidence: ‘My brother was born VERY early and has been in LOTS of hospitals. And he’s AMAAAZING. He can’t crawl yet but babies do things at different times and it’s hard for him. He will do it one day. And we need to be kind and help him. He’s the best brother in the world.’ My heart started to thump and tears welled up in my eyes. Did I mention she’s 5?

Life”s not all a bowl of cherries in Booland and Sissyboo needs and will in the future need support of a kind I never anticipated because of her brother’s disabilities. This makes me very sad. But however much I worry about that, I never worry about the relationship between my kids, about how much she loves him and how far she will go to be his advocate.

The other day as we walked home from school she told me that one of her classmates had fallen off the climbing frame and her friend’s big sister was in floods of tears as she watched her little sis having icepacks and plasters put on. Sissyboo was puzzled by the big sister’s reaction and I was puzzled by my daughter’s uncharacteristic lack of empathy:

‘She’ll have been upset because she thought her sister was hurt,’ I said. ‘You would be the same if something happened to Mr Boo, wouldn’t you?’

‘No,’ she emphatically replied. I was surprised and it must have showed in my expression

‘I wouldn’t cry because I’ll always be there to catch Mr Boo. He’ll never fall off anything. I won’t let it happen.’

You will fall, Boo. And, despite what she thinks, she might not always get there in time to break your fall. But she’s got your back Boo. Be in no doubt of that.

You are one lucky fella. And I’m one heck of a lucky mum.