Monthly Archives: May 2014

R.E.S.P.I.T.E. Find out What it Means to Me

For #ThrowbackThursday a post about an important topic that’s still a work in progress here. Do you get any respite? What form does it take? What does it do for you and those you care for?

Premmeditations

Things have been changing pretty fast in Boo Land lately. After a year of never leaving Mr Boo for more than 2 hours at at time, and then only about three times since his birth, a year of doing every school run for Sissyboo, of spending every waking moment thinking about them and worrying about what I’d forgotten to worry about, suddenly I had an opportunity to think about myself.

I went away. For a weekend. With my sister. To our cousin’s wedding. In NYC. Yeah baby!

I was all set to book my ticket at Christmas when Mr Boo developed Infantile Spasms. I felt like our world, already devastated by the earthquake of prematurity and aftershock of cerebral palsy, was now about to disappear beneath the tsunami of epilepsy.

This was no natural disaster, though. There was nothing natural about this. It was wrong. It will always feel…

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Accepting that Others Don’t

The A-word is a big one in the premmie and special needs worlds. Almost the minute after your baby is born early or when health or developmental difficulties first become apparent in your child, healthcare professionals and a host of well-meaning folks start telling you that you are on the road to acceptance and that it will take you a while to get to your destination. But you will get there, they tell you. You may find yourself in Holland at the end of the journey, but who wants to go to Italy anyway. (I, for one, am quite fond of sun and pasta, for the record.)

When I think back over the past year and a bit of blogging, I realise that I have blogged much less about acceptance than I might have imagined I would. It’s true that one of my favourite posts on the blog (because it’s about one of my favourite people) is about Sissyboo’s instinctive acceptance of her little brother. But I have written about acceptance much less in relation to me.

There are two reasons for this. It’s partly that, quite frankly, I don’t like the word all that much. As I’ve said before, accommodation seems a much more accurate way of describing my response to Boo’s challenges. But it’s also simply the fact that since he was three days old, I just knew life would never be straightforward for Boo. Once he had contracted that bloody infection in his incubator, and once we heard that he had sustained a massive brain bleed, I knew what that likely meant. I wanted things to be different, of course. I wished, begged and prayed that I was wrong. But I knew. I’d accepted the difficulties that lay ahead long before we got a diagnosis of cerebral palsy or before I even knew precisely what those difficulties  would look or feel like.

I haven’t written much about acceptance on the blog,I now realise, because I have pretty much always accepted things. Or at least, I accommodated myself to them a long, long time ago.

I feel lucky that acceptance has been relatively easy for me. That’s not to say that I’m not regularly twisted into knots or prone to depression, anxiety or the odd waterfall of tears with worry about Boo. But I have seen the pain and anger that others have felt trying to take on board how things are and are likely to be for him. And I am glad that I have never had to feel that and that such emotions have never got in the way of my unbounded love for him.

But lately I have come to realise that I do feel pain and anger (irrational and unkind pain and anger, I think) when confronted with others’ lack of acceptance of my son. I’m not proud of it, but it’s true.

This is the sort of thing I mean.

Scene 1

Me [talking to parent in the school playground]: Yes, Boo’s doing well. Thanks for asking. [An awkward pause while I try to think of something to say that is a positive in our lives and that they won’t greet with that look of pity I find so hard to takeBingo!] He was given a walker to try out by his physio last week.

Parent: [with palpable relief that I am not going to talk about things that make them uncomfortable like the fact he still can’s sit independently]: Oh that’s wonderful. He’ll be running before you know it. You will be sending him here to school won’t you? He’ll be captain of the sports team one day, I’m sure.

Scene 2

Me [making idle chit-chat while waiting for our mainstream swim class to start while Boo is eating my hair and trying to break my back by going into full extension in excitement]: Boo’s moving up to the nursery room next week so he’ll be with J. We’re really pleased he’ll have a friend there.

J’s Dad: Great. It’s good they’re finally moving him up to be with his peers. He’ll catch up with the rest of them in no time, I’m sure.

These are both real-life conversations I have had in the past two weeks. I could have picked around a dozen more in the same period. All were had with well-meaning and thoroughly nice people. But they left me sad. More than sad. Angry. Not with these people, you understand. That would be wrong. But just with the situation. With the failure of others to come to terms with things as they are.

I don’t know if Boo will go to mainstream school. It’s possible. But his physical needs are severe and he would need considerable 1:1 input. It is unlikely he will go to his sister’s school. Even if he did, he will never be the captain of the sports team. I don’t know if he will ever walk unaided, but the best guess of everyone involved, is that even if he can walk short distances with a frame, he will use a wheelchair much of the time. He will likely never run.

And he will never just catch up because he’s not behind. He is exactly where he should be – no: he’s miles ahead of where the MRI scans suggest he should be – given the extent of his brain damage. Of course, being with his peers in nursery is a great thing. I couldn’t be happier that this has happened and that the transition has gone well. But Boo will never be exactly like his peers. And why the heck should he be? He’s just perfect the way he is.

Oddly, I find the eternal optimism of people we don’t know very well to be much more difficult than some of the doom and gloom predictions of medical folks we see regularly. It’s much easier to prove people wrong (and Boo and I take great pleasure in doing this on a regular basis) than to disprove that others could ever be right. And on the odd occasion where I have corrected people and pointed out that it’s unlikely Boo will outrun Mo Farah one day, but that that’s fine and we don’t care, I have been made to feel like I am a pessimist, have an unhelpful attitude or that I have done something wrong in not doing my best to make other people feel better by painting a false picture of my son’s life and future.

I am aware in writing this that you might think me mean spirited. I hope you see that I don’t blame people for saying these things, but I do find them difficult to take. You see, they are a constant reminder to me that we can accept Boo completely, but they – society at large – will always be judging him according to a yardstick he can never live up to.

So I guess I do still have quite a bit of emotional work to do. Accepting that other people find it hard to accept Boo is going to be one of my trickiest challenges. But I have to work on it. Because my little boy is going to have to do this later in life, and his sister is already having to do it now. And I want to be ready to help them. Because we are in this together.

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

Welcome to Premmieland: Where Little Things are a Big Deal

For #ThrowbackThursday A post that remains as true for us today as it did this time last year. I have a feeling it always will feel that way. How your perspective changes totally after having a premature and disabled child.

Premmeditations

Let me let you in on a secret. I’m someone who makes mountains out of molehills. Small beans are almost always a big deal to me. It’s just how I am, but it’s something I’ve often been criticised for, mostly by kind folks who are trying to get me to stop worrying about the small stuff and see the bigger picture so I can go a bit easier on myself. It’s something I tried to cure myself of while pregnant  with Mr Boo. I wanted to be better able to put things into perspective before he arrived and inevitably made life more chaotic, as any new child does. (Little did I know…) But now I think I’m a completely hopeless case. I’ve just come to the conclusion that I see the world in a particular kind of way and my radar is too sensitive a lot of the time.

I’ve…

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8 Presents for Young Children with Cerebral Palsy

Last month it was Boo’s second birthday. It was also Easter, of course. We’re also in the middle of our anniversary season – the 11 long weeks that span Boo’s actual birthday (a day of mixed emotions for us), the anniversary of the day he came home, followed by the anniversary of the day he was supposed to be delivered by c-section to avoid the complications we had with his sister, and finally the anniversary of the day he should have been born. Anniversaries are tough in premmie land, but there is also a lot to celebrate. And one of the nicest things is seeing Boo receiving and playing with lots of new gifts that help us ring the changes in the daily grind of repetitive therapies.

But it’s also hard. Don’t get me wrong or think I’m ungrateful. I’m not. But I have to admit that all the texts and calls I got from people asking me what they should buy Boo for his birthday or as a small Easter gift (he’s not wild about chocolate) weighed me down.

My to-do list was especially long then. It was another thing I didn’t have time to sort out for other people. Some people even asked me to buty presents for Boo on their behalf … But what really bothered me was that all of this was just another small but significant demonstration of how people don’t know what to do or think about Boo.

He is a little boy. Oh, but he has cerebral palsy. Goodness. What on earth can you buy a child like him?

Of course, some people (many people) asked me these questions because they know the high costs of looking after a child with additional needs. They know that budgets are tight and we prioritise carefully. They wanted to help us buy things that he really needed or that would help him. And of course it’s just common sense, isn’t it, to make sure what you are buying a child with additional needs is suitable for them, in Boo’s case that they can actually access it?

But it still made me a little sad. So do the people who say (and really, they have said this to me): ‘I’ve sent money because I wouldn’t know what to buy him’. Now obviously, money can be a fabulous gift to a child and family with additional needs, especially if they’re saving for an expensive toy or piece of equipment. But to send money because ‘we don’t know what to buy your child’ (this has been said to me too) as if my little boy is an alien who has just crash landed into our garden after journeying through several galaxies is hurtful.

So I thought I’d share some thoughts on buying gifts for children like Boo and give some some examples of the things that have gone down a storm here. I’ve seen lists like this myself on Amazon and such like. And they can be really helpful. I hope this might be, too.

But first let me say this: a child with cerebral palsy or any additional physical or cognitive disability is first and foremost a child. Boo loves to play. If you asked him what toys he wanted for his birthday his answer would be his favourite new word: ‘more’. Now that’s partly because he’s speech delayed and he only has a a handful of words. But it’s also because he’s a kid. He wants things, lots of of things, lots of brightly coloured, noisy and (for Mummy’s sake) robust things that make the never-ending cycle of therapy feel fresh and new. Frankly as his number one therapist, so do I!

All this means that some of the best presents Boo has ever received are those where people have just taken a punt and treated him like a kid rather than a kid with CP. A friend of mine sent him a Melissa and Doug wooden train for Christmas. And he just loves it. OK, so he can’t attach the carriages to the engine. OK, so he mainly ends up throwing it around the room when trying to get the cow out of the trailer, but he loves it. He doesn’t know he doesn’t play with it conventionally. He just plays. And every toy, pretty much, has therapy potential. Taking things out of the carriages and putting them in is fine motor therapy. Sounds (choo-choo and moo) and words (train etc) tick the SALT box. We can learn through just about any kind of play.

If you have a friend whose child has additional needs, why not take a punt? Or if you’d rather buy something the child might really need or want, why not say to the parents, ‘I just wondered if there’s anything particular X wants for their birthday, but I’m happy to pick something myself and have lots of ideas’. My best friend always says this. She says it because she knows sometimes it takes me a week to reply to a text message. She says it because sometimes it’s all a bit much and I can’t add another thing on the to-do list. And she says it because she is always lovely.

But there are toys out there that are particularly great for kids with additional needs and here are the eight gift ideas or types of gift ideas that I would recommend for a non-toddling toddler with cerebral palsy or simply issues with high or low muscle tone and gross and fine motor delay . It’s not an exhaustive list by a long way. No: these are just a few things that have made the most impact in our life. In all of these, play and fun are the goal, but all have therapeutic benefits.

1. Musical instruments

 

We’re a very loud household and sometimes tuneful with it. Musical instruments are Boo’s favourite toys and are the easiest way to get him to do any physio (reaching, grabbing, rolling and most recently stepping, which Boo does to get to his crocodile xylophone which we put on the sofa for him to play with while in a supported standing position).

I wrote a guest post about learning through music for the lovely Edspire a while ago, so you can read more about some of the other ways we use Boo’s instruments therapeutically there. But let me tell you, if Boo gets a present that rattles, dings or chings before he opens it, you know you are on to a winner. And the possibilities are endless and can be very inexpensive. From a couple of handbells (less than £5) to a drum or xylophone, I don’t think any of the things in the pic above cost above £15. They are much loved by us all. But not necessarily by our neighbours.

2. Books

Books are hugely important to our whole family and Boo loves a good story. Especially great are sound books where you have pictures in the text telling you to press a button at a particular moment. (Flap books are also good, but Boo struggles to manipulate them with his compromised fine motor skills.)

Sound books not only animate the story but they aid cognition as they encourage children to anticipate the sound. Some are also just hilarious. If you haven’t read the sound book version of Aliens Love Underpants, let me tell you, you haven’t lived. We also love What the Ladybird Heard (I do a mean Lanky Len impression, I tell you) and Room on a Broom.

3. Lights and lava

If you are lucky enough to have a sensory room somewhere near you, I won’t have to tell you how great lights and lava toys can be for kids like Boo.

Three of the best unsolicited presents Boo has ever got fall into this category. First there was the lava lamp (from one of my godmothers) and then a bubble tube with plastic fishes (from my other godmother). The lava lamp completely captivates Boo and calms him. We use it at night sometimes when he won’t settle to get him to stop crying while his legs are spasming. The bubble lamp has the opposite effect. It gees him up (although I know other kids find them calming) but he is also kind of hypnotized by it and will sit longer, straighter and better while watching it than while doing anything else.

The last of these three wonderful gifts was a light projector pillow pet. I’m sure that Boo has no idea who the Teenage Mutant Ninja Turtles are, but he loves watching the colours change and fade in and out on his when we settle him at night. Best. Presents. Ever.

4. Puzzles

Boo loves puzzles, sometimes called form boards, where you pull out (usually wooden) pieces from a template. He struggles a bit with them because of the difficulty he has using his arms and reliably opening and closing his hands, so big handled ones are best for him. You can buy  puzzle and formboards with large handles from various SEN companies but they can be terrifically expensive. There are plenty of high street brands who do these without the special needs label (like Big Jigs) and they cost much less. And don’t be afraid of puzzles being a little too hard. The only toy I can rely on Boo playing with independently without fuss for half an hour is a board with different door locks on by Melissa and Doug. He can’t work all of the latches, but loves playing with them, especially when I open all the doors for him and he has to close them.

5. Cuddlies

Not much to say here, except what I said earlier. Boo is a little boy who just happens to have CP. And like most kids his age he likes teddies and dolls. He cuddles them and plays with their hair (he has a hair thing and it means he stops playing with mine for a bit). We also use them in role play. Feed the teddy, make dolly some dinner, that kind of thing.

6. Balls

You can roll, kick or throw them. They come in all sizes, colours and textures, from smooth to rough and bumpy. You can get latticed ones (great for little fingers that can’t reliably open to hold on to). Some light up. Some, Boo’s favourites (do you see the pattern here?) are noisy.

And some are so big you can sit and roll on them. Like this one, which currently resides under my work desk where my feet should go…

What’s not to love?

7. Bubbles

This has to be the cheapest gift ever. Tubs of bubbles cost pennies but can produce the biggest smiles. Boo can’t blow, although we are trying to teach him. But he should put bubble popping in his CV. We have tried all sorts of bubbles. He loves the enormous ones you can get with those outsized wands and we recently discovered set hard bubbles which land on Boo’s Bee seat tray and he spends ages trying to pop them. But if you can spend a little more (say £10-£15) I can’t recommend a bubble machine enough. Boo stares at his, squeals and yells ‘more’ at least once a day until I dutifully turn it on for him. We have one that we can plug in or put batteries in for the garden. I think I will have to pack it when we go on holiday.

8. Talking Toys

We use talking apps on the phone in Boo’s speech therapy. You know the sort of thing. You talk to a strange creature who repeats things back to you in a high-pitched voice. Boo likes them but is always trying to grab the phone off me and look in my camera roll to see pictures of him and his sister (which like bubble popping should be listed as one of his hobbies on his CV). But then Gina came into our life.

Sissyboo bought her for Boo’s second birthday. She was determined to buy him a giraffe on account of them being his favourite animal. (Her evidence is his love of the Giraffes Can’t Dance book.) While looking online for a cuddly giraffe (because Mummy left it to the last minute), we found Gina, a cuddly toy who started life as an app.

You press her foot/hand and she listens. And then she repeats what you say. The minute Boo sees her, he frantically repeats ‘hiya’ until Gina responds. She sits in on most of our SALT at home these days repeating what we have to say.

And speech therapy has never been so much fun. I’m pretty sure Boo thinks he is teaching Gina phonics rather than me teaching him but who cares.

This isn’t a SEN toy. As such it doesn’t cost the earth. In fact, it was pretty cheap. But it is one of the most therapeutically beneficial toys we have for Boo. Cause and effect cognition? Check. Speech development? Check.

But you know what? Most of all, it is a toy, a cute, funny and entertaining toy that allows Boo to be a kid and play. What better gift could you give any child?

I’d love to hear your ideas for top presents for children with additional needs. Please do leave a comment with your suggestions.

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2 Years Ago

 

Two years ago, I woke up with the by now all too familiar feeling of excitement mixed with dread. I felt queasy.

Two years ago we got ready to go to the hospital. Again.

Two years ago I longed for the days I wouldn’t have to hit a buzzer to be permitted through a door to see my little boy.

Two years ago I walked the usual walk from the car park to the hospital entrance.

Two years ago I looked up from the ground floor to the first and gazed at the window where the blue lights were on.

I hoped you were OK. I hoped nothing unexpected had happened overnight.

Two years ago Sissyboo held my hand just a little bit tighter.

My other hand was weighed down with things I hadn’t had to carry for a long time: a change bag and a car seat.

Two years ago we hit that bloody buzzer again. For the last time.

Two years ago you looked so big, though still so small.

Two years ago I crossed my fingers for the three hours it took for us to get the word.

That felt like ages, but we had waited so long already. Six whole weeks that felt like six long years. Because two years ago we learned that time can slow down to the point you feel it will never get moving again.

And then, two years ago and three hours later we finally got the nod.

As we walked to the door I kept waiting for someone to tell us it was a mistake. That they had changed their mind.

But they didn’t.

Two years ago you weighed the magic five pounds and had reached the equally magic 35 weeks gestation.

So two years ago our life was rebooted.

Two years ago we became the family of four we had longed to be.

Two years ago, Boo, you came home. Happy homecoming, gorgeous boy. We are so pleased you made it back to us. We will never be separated again.

 

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IS and us: Infantile Spasms and the Worst 8 Weeks of our Lives

For Throwback Thursday this week I am reblogging a post I wish I had never had to write. And equally, I wish it wasn’t sought out so often via Google by parents who sometimes use the most desperate search terms to find it. But I also want to spread the word about infantile spasms, the rare form of epilepsy Boo developed in December 2012. It is horrendous, but Boo’s story so far, is a happy one with a good outcome, thanks to early diagnosis and effective treatment. If this post helps one other person recognise the symptoms or gives a recently diagnosed family hope, then this blog will be worth every minute I manage to spend on it. Thanks for reading.

Premmeditations

Mr Boo and public holidays don’t get on. All my plans for Easter 2012, a last and long holiday with Sissyboo before her little brother was supposed to arrive 2 and a half months later, was totally upskittled by his surprise entrance on the Monday before. Easter Sunday, as he lay lifeless quietly fighting meningitis and sepsis, was one of the most gruelling days I hope we’ll ever have to get through.

So we had high hopes for Christmas. We were all together, after all, and we were going to my parents’, so I could relax. We were going to make it up to Sissyboo.

And then Mr Boo started hiccuping on Christmas Eve while I was breastfeeding him after he had woken up from a nap. It was kind of funny and cute feeling the pulsing of his pleasantly chubby tummy against mine.

In the wee small hours of…

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