This is a very specific blog for a very specific campaign.

Mencap are currently running a campaign to highlight the need for, and the immense benefits of, respite, or as it’s being re-named, short breaks. I have issue with the term ‘short breaks’ as it makes it sound like some kind of Bridget Jones-esque mini-break in a two seater car, which it isn’t, but I understand the need for a re-brand. Respite is defined as: ‘a short period of rest or relief from something difficult or unpleasant’ which makes it sound like a negative. Short breaks sounds a lot more positive although, I suspect, many of us don’t have the energy for the fun-sounding nature of Ooh, a break? and just, you know, catch up on the washing and some sleep. But it is true to say it is beneficial for both parties – both the carer and the care-ee. The carer gets that much needed time for themselves, the care-ee gets to spend time with someone different, somewhere different, and who doesn’t benefit from that?

Our #breakingpoint came last Easter. I’d thought we were doing fine, me, OH, Big and Small until my brother and his family came to stay. It’s true to say that it’s not the big things that break us, it’s the little things. Mine? Well, it was steps. We all went to visit a stately home nearby which was all but inaccessible to Small in his adapted buggy. There were steps to the house and there were steps in the garden which meant the part which we could get him – and us – into was pitifully small. And as I watched my brother take Big – but not me, or the rest of my family – into the house to look around I saw the rest of my life playing out. It wasn’t the big things that I wouldn’t get to do (planes, foreign travel, museums) it was the tiny every-day things that you expect to do as a family: to get down a cobbled street, up some steps or stride up a hill… that made my world implode. I suddenly saw how restricted my life was to become. This was not, and had never, been in the plan.

I cried for the next 3 days. My husband, for the first time I think, saw how things had become. We talked for the first time about how bad life had become, how we had allowed it to affect us, and Big, and could see no way out. We wanted someone to take our problem away. That problem was Small.
When I dropped Small at nursery I burst into tears all over his lovely key worker. She made me a cup of tea and let me do crying. She called our Social Worker. Critically someone offered to take Small home that night, to just give us that break. I will be eternally grateful for this one act of kindness.

Our Social Worker came out the next day and I cried over him too as we explained that our marriage, and therefore our entire family, had hit rock bottom and if they could not help us, well, we were in trouble. To their credit they helped, and they helped swiftly. We now have respite once a fortnight. I cannot over-emphasise the difference this has made to our lives. We are now able to climb steps, walk up hills, go down those cobbled inaccessible streets whilst Small goes to the park, feeds the ducks and is – wonderfully – looked after by someone else for a few hours every other week. Life slows down, Big gets some undivided attention and the washing gets done. Sometimes I go out for a coffee with a friend. I get my hair done. None of these are big things.

I have stopped crying.

And this, surely, has to be better, more inexpensive than taking children away from their families who cannot cope? Or denying that help or intervention is needed? We love these children. We love them fiercely, but they are hard work. Every person needs a break and where usually there are friends, grandparents who can provide this for us, these children are a little more challenging, harder to accommodate. This is the gap the government, our local councils, have to fill. Because the alternatives… are unpalatable and unnecessary. Social care is always an easy target in the budgets; it affects vulnerable people who don’t have the time or the energy to fight back. I’d like to think this is not the #bigsociety Dave had in mind.



When Small gets ill

Small is ill.

It’s nothing huge. He has tonsilitis and a cold on top of that. He streams snot as he has a cold. He streams dribble as he just can’t swallow very well – his throat hurts we think. After he’s been sat up for more than 40 minutes I have to change his top as it’s sodden. Every time I pick him up for a cuddle I have to change my top because, well… yuck. Thank goodness for our washer/dryer.

So far, so normal for a 3 year old you think.

But there is something else. Some tiny panic that I don’t recall having with Big.

Every time Small gets sick, a little piece of me worries he will die.

I have no reason to think this. He’s a very healthy boy, and it’s been a long time since he’s been hospitalised. That sick feeling I had? I remember that vividly. I remember the ambulance journey we took because the febrile convulsion he’d had had paniced the life out of us and made us call 999 but this was over a year ago.
These feelings stay ingrained and every time Small gets ill, and after I’ve checked Calpol stocks, I mentally run through:
Where’s the suitcase?
Is my phone charged?
Is there childcare cover for Big?

I do this because… because he is not a normal 3 year old. Because he cannot tell me where it hurts, I can only guess. Because I am never so sure it is ‘just’ anything. Just maybe, just perhaps, this is a manifestation of his swan-ness, of this syndrome he has, that is so rare noone knows what it is, maybe this will trigger something bad.

I’m sure also this is wrapped up in how much my fierce love for Small has grown. At the start of our journey with Small, when we first discovered all was not well and every single day was black, there were many days I would wake up hoping he had died, because surely that would be better for all of us? But now, now the thought of it catches my breath in my throat with the awfulness of it, the sheer panic it induces is overwhelming. And so…

And so you are right, I’m almost certainly being ridiculous, being that over-worrying mother. Yet every time this happens. Every time I have to check myself.


Two Christmas Plays

I say Christmas, as they weren’t nativities. Both my children had their end of term Christmas plays last week, and though both go to C of E schools, neither really went the whole hog for the nativity. For me, as a non-believer (sorry), this was a good thing, but it amused me nonetheless. Big’s was undoubtedly the Christmas story, but focussed on the three kings (one of whom had a birthday the same day as a new baby – guess who?) and Small’s… Small’s was an inspired story of Little Red Riding Hood, Snow White and Cinderella all going off to visit Red Riding Hood’s Granny, but being ambushed by no less than 10 break-dancing wolves (there were a lot of children needing a part), but who were saved by Granny and all her mates scooting back from bingo (picture 8 five-year-olds scooting into the hall – brilliant).

There is a Yiddish term, ‘kvell’. To those of you who don’t know it, it means to be ‘extraordinarily proud’. This is how I felt about my children last week, for very different reasons. For Big, my beautiful eldest girl, I was so proud that she had been given the lead part. We aren’t supposed to say this are we? we are supposed to self-deprecate these achievements, to say, ‘oh, well, it was probably her turn’, but oh, I was so pleased when she told me. She loves being on stage, she exudes confidence that smoothes that gap if she misses a cue, and you can tell she’s enjoying it. She had a blast that night and I was so happy to watch it, to say ‘yes, she was good wasn’t she? although your son was very good too…’ Deprecate, deflect…

And little Small. I was so proud he was able to turn up. For any other person, with any other child, you’d think that was a little harsh, but I hope you understand why I say this. At no point did anyone say it would be too loud or complicated for him, noone said it would be awkward, or that he wouldn’t last 45 minutes. He was included. All the nursery children played stars and they sat, or stood, at the front, opening and closing their hands on cue and, at one stage, walked up and sat on the stage. And Small was there too. Sometimes he didn’t sit, sometimes he threw himself back to Pam who was always there to catch him, soothe him, help him feel happy enough to sit up again. Sometimes the little boy next to him handed him a toy. Small didn’t stand the whole way through the song, he got bored half way through and sat down. But, He Stood. He stood well supported, but that boy stood. I’ll say it once more. He stood. He bore weight on those feet next to the other children and I cried. And when they walked to the stage, Small – heavily, heavily supported under the arms – walked those few steps to the stairs as well (and was then hoiked up – stairs are a way off just yet).

Without doubt my boy is disabled, and this is thrown up so much more when he is surrounded by neuro-typical kids who know the words, know the actions and wave to their parents. But Small was actively included, able to participate and I think enjoyed the experience. And I popped with pride seeing him do something every child should do – a rite of passage if you will – his Christmas play.


Christmas as told by Small

It’s Christmas soon isn’t it? Mummy thinks I don’t know that, but I do. I might not know it like Big knows it (Man, if her head could explode with excitement, it would!) but I know it.

This is how i know it…

Big’s head is about to explode with excitement (I said that didn’t I?) but it really, really is! She keeps saying she wishes it was tomorrow but I know Mummy doesn’t. Mummy doesn’t because I know this too: She. Is. Not. Ready. She keeps making lists, looks at Amazon a lot then drinks more coffee. We’re not doing a lot of physio at the moment, so Christmas is fine by me.

My nursery is putting on a play which means I’m not doing much physio there either! We listen to songs a lot and I flap along to them. I love music. Lovely Pam is determined to have me sat up on stage, not sat in my special chair. Really, I’d rather sit in my special chair as it’s a lot more comfy than sitting on the cold, hard stage and I know I’ll get sat behind the tall kid with a cold, but I appreciate what she’s doing. She says I’m going to be a star. I love shiny things so this is going to be great.

There is a lot more cake in the house.

Whenever we go out, I hear singing. Mummy says they’re carols, I just love them, they’re so beautiful and always make me smile.

Big has a lot of lines to say in her Christmas play and I have to listen to her say the same words over and over again so she can ‘learn her lines and be better than Tyler’ is what Mummy says. I don’t mind though, I love seeing Big so happy. Mummy says I’m a huge distraction, because Big just keeps coming over to give me a cuddle rather than do her lines (this is what I do to Mummy when I don’t want to practise anything too) but I love listening to Big. Whatever she says is funny.

There are shiny things everywhere. I see then at nursery hanging up, I see them when we go out shopping, all the lights, and all that beautiful shiny-ness… it’s the best thing ever.

Mummy says we are staying home for Christmas this year, not travelling up and down the country as I find that a bit difficult sometimes – new places and new people sometimes unsettle me and then I don’t sleep. Mummy likes me to sleep. She says the she’s a new Mummy when I sleep. I don’t want a new Mummy, I like this one, but I think she just means she likes sleeping too. So everyone is coming to visit us, which is brilliant as it means there will be loads of wrapping paper to enjoy flapping at and eating. Sometimes people wrap the paper around things which makes it really hard to get hold of, but Big always helps me get it off. I call that team work, she gets the toy and I get the paper, it’s perfect.

So it’s Christmas, and in my own way, I know it’s coming. I know that people are happy and excited about it, and that makes me happy and excited too. I like to think I bring a new perspective to it, because that’s what Mummy and Daddy say too. It’s a very long word, so it must be true.

Happy Christmas everyone xx