Calling for new carers

Before I had Alex I – somewhat naively it turned out – assumed that when letters were addressed to ‘the parent/ carer of…’ that you were either/ or.

Turns out… You can be both.

First and foremost I’m Alex’s parent, his mother.

I love him, we love him, we try to bring him up as best we can, just like any other parent of any child would.

But carer….that’s a way heavier burden.  That implies you have to get it right, all the time.

(And sometimes that’s more overt than at other times – the social worker who comes out every 6 weeks to my house for safe guarding… the note home in his school book: ‘we noticed a bruise on his leg’… Because my boy – my beautiful little boy – he’s classed as ‘vulnerable’ because he has disabilities).

We feed him, clothe him, try to find him the right equipment… make sure he’s comfortable, stimulated to keep on developing… advocate for him with anyone who will listen. We look after him and keep him safe – 24 hours a day.

Whilst his independence is definitely increasing, it’s incremental, and without us, he wouldn’t survive.  Every second he’s in our care we are with him – from getting him up in the morning, to eating, bathing, going outside, every nappy change (just stop – if you will – a nappy change on a 7 year old boy) all the way through to pyjamas and bed time.

Sometimes that’s a huge weight.

Looking after a 7 year old boy with severe learning difficulties is considerably harder than looking after one who is neuro-typical.

Who knew?

This is where other carers in his life are so important.  They lighten our load – make us better parents and enrich his life.  When Alex goes to respite my head empties.  The whole house slows down.  Meal times are more relaxed.

We can do all those things that most other people do without thinking – go out for a meal, watch a movie, see a show.  Walk up steps.  Sit and watch the view.  Read a paper.

All without worrying if he’s about to physically or vocally express his impatience, or disgust, with the choice of activity.

Alex is a gorgeous little boy.  He’s incredibly sunny.  Broadly very easy going.  But he likes to be on the move – or have the freedom to move – pretty much all the time.  And you can see that that’s pretty incompatible with a lot of the activities I just listed… So time apart is critical.

For all of us.

We get to rest up and do the things that are otherwise out of reach and Alex gets a change of scenery, a chance to be with new people, who are focussed on him and his needs… just like any other sociable little boy.

This week is Carers Week.

I think that encompasses both me and, potentially, you.

If you’ve ever thought of doing respite care for a child, please contact your local council.  Anything is an option, from a couple of hours after school, to an evening meal, to an overnight stay.  Our kids… they aren’t scary, they aren’t frightening, they’re just not what we’ve decided to deem ‘typical’.

They will enrich your lives.

And you will know the good you are doing for both them and their families.  Thank you.

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Mummy, show them the hat, the hat *always* works!!

We are all superheroes

I had to go and look up ‘superhero’ as I was curious as to what the definition was.

It wasn’t helpful. It said ‘having superhuman powers’.

So I looked up ‘superhuman’ and I got a bit closer to something tangible.

Words like ‘extraordinary’ and ‘remarkable’ came up. (so did ‘God-like’, but that doesn’t fit the narrative so well…).

Alex is both extraordinary and remarkable every day.

He just gets on with life.

If he wobbles when he walks he knows someone will catch him.

If he’s out in his wheelchair and flaps and claps with impunity because something has beyond delighted him… and people stare… he doesn’t care. Which is more than I can do.

If another medical test is decreed – a blood test, a hip x-ray, a dear-God-not-again lumber puncture and people have to hold him down to get the results they need… he will shout in distress, at not being able to understand the Why???

But once it is over, he is back to being sweet, loveable, affable Alex which breaks my heart and makes it pop with love in equal measure.

He is our superhero.

But he has also spawned a family of superheroes.

His sister rolls with it – ‘He’s just Alex’. Answering her friends’ questions as well as possible with the little information she and we have.

Days out based purely around accessibility. Not fun-ability. Or spontaneity.

Rigidly planned.

Our marriage has held, but only just, and it is forever tested.

Lives forever changed, ambitions altered beyond recognition. Simple things more often than not… not possible.

I am beyond grateful for carers giving us the bandwidth to go out and be ‘normal’ – for a while.

But we are still standing, the four of us, all of us in roles not anticipated, all of us more than coping. Sometimes even thriving.

Which brings me to… this is due in no small part to SWAN. We met fellow parents who we bonded with and bonded to in our shared understanding of no diagnoses.

It is without doubt a little understood hinterland of rare diseases where we are fiercely protective of our children – and each other – whilst all looking for answers.

This is a small but truly amazing charity and April 27th is #UCDsuperhero day. Please support them in whatever way you can.

Thank you x


Mummy, is this me and Spidey? Two superheroes in one photo??

Things forgotten and remembered

Reading has always been a big part of my life.

Growing up, books were all over the house, packed into bookshelves, more often than not piled on top of each other as how could we decide what to throw away?  Noone was very good at actually getting rid of books.  Unlike clothes they seemed to hold more memories – where you were when you read them, how they made you feel, did the storyline resonate, influence your life a little?

So when our children were born we wanted to make books and reading important to them too.

When our daughter was tiny she and I would lie on the bed (because she was too young to sit) looking up at the ‘That’s not my…’ book series.  I loved those because they were brightly coloured and had touch and feel sections that were perfect for her to explore.  (Apologies to everyone who had kids after us, I know you probably got one of those from us as a present… I still love them now!)  As she grew up we graduated to The Gruffalo and Guess How Much I Love You and (though I died a little every time we read these) the bastarding ‘made up by committee’ stories… the Rainbow Fairy books.  But she loved them and without doubt they helped teach her to read.

So with Alex, I wanted him to enjoy them too.  When he was born it was easy.  We hauled out our daughter’s early books for him too.  But as it became apparent how his life might turn and differ from hers, so it was harder to read with him – it dodn’t seem to connect with him.  I wasn’t sure he would ever understand the words or could even see the pictures.

One friend bought us some brilliant black and white picture books which definitely caught his eye but the story books… well, it was difficult to tell if they held his attention.  So as he got older… I read less with him.  Played more.   Let him lead bedtime with musical instruments and endless cuddles instead.  I missed the books though.

About 5 weeks ago I decided to give them another go.  Bedtime just felt wrong without a story.

I tried Meg and Mog – a battered old copy we’ve had for longer than Alex.

As I pulled the book down Alex grinned and shuffled over.  Tapped the book.  And I read to him.  Meg and Mog is brilliant as you can do the character’s voices, and add in all the sound effects and this is the kind of storytelling I think Alex likes best – less character development, more fun noises and as a storyteller, as a parent, we’re happy to oblige.  He grinned, clapped his hands then tried to eat my hair.

(Trying to eat my hair is one of Alex’s many ways of showing affection.  It’s a lot less painful than it sounds.  Honest.  So long as you know it’s coming…)

So now we read almost every night.  Which is lovely.  He doesn’t always engage, sometimes he’s not in the mood, sometimes maybe I’ve picked the wrong story, but now I know he likes them, that they make him happy, it makes it much easier to try again.

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Mummy – Noisy Bottoms is my favourite! What’s not to find funny about farts??

What do you mean ‘not again????’

 

Becoming Alex

I’m a little bit in love with Alex right now.

I mean… if it’s possible… I love him even more than I did before.

That’s ok for me to say, right?

We love our children to the moon and back but, well, recently he’s just nudged our moon a little further away. Filled my heart a tiny bit more.

I think it’s because we’re learning more about him. As he’s able to move, he’s able to show us what he likes (opening and emptying cupboards), what he doesn’t like (not being able to go outside…), which parts of the house he likes spending time in, which… not so much.

I love to watch him move.

I love that he will stand at the table as we put his seat behind him – as you would someone at a restaurant in a bygone day. How he’ll sit down and, using his hands, ‘shunk’ himself backwards so we can put the lap belt across.

I love that if the wheelchair got left in the car, instead of my swearing at whoever did that (it obviously wasn’t me…), running out to get it… he’ll now hold my hand and walk to the car with me, anticipate the door opening, move out of the way and then let me hoik him (in a somewhat ungainly fashion) into the car seat, move his arms to put the belt across, know when to move them so they don’t get trapped.

When I get him dressed he helps by putting his arms up to get his top off and head through and arms through when he gets his new top on. He does not have cotton wool arms. He knows what to do. He anticipates.

I love putting him to bed. Previously I had to lift him, move him, position him, now… standing up holding my hands… we do a sideways crab-like dance up to the bed, he turns, I help him sit down, then he will use both hands to shift himself back, turn, lie down… wriggle till he’s comfortable and then, when I hand him his quilt, he’ll pull it up, right to his face, because he loves the feel and security of it.

So suddenly… There’s Alex. Suddenly – though not suddenly at all – showing he can do it by himself…and the bits he can’t do himself, that he’ll let us help and he’ll help us so the thing gets done.
Not being passive in his life, but participating.
It becomes a two way interaction.

And with that communication of wants and needs comes an understanding between the two of you. Which, when you’re a parent of a child with disabilities, you come to hold quite tight.

You’re a team.

Mummy!! Right now I’m telling you this is great! (but don’t move too far away…)

To the parent of a newly undiagnosed child…

I remember the start of our journey of ‘What…? Why…?’ with Alex very clearly, though I don’t like to think of it often.
It makes me go cold.
Want to cry.

You never think you ask for much when you ask for a family of 4… for everyone to be healthy, no unforeseen complications.

Turns out you’re asking for the moon.

We had endless hospital appointments.

Friends, family, well meaning strangers all trying to understand something that… well, couldn’t be explained. Our son wasn’t developing the way he should. That much we knew. Anything beyond that, unexplained.

#undiagnosed.

No box to tick. No neatly tied up end of series explanations for us. Just endless cliffhangers.

What I want you to know though is…

It gets easier.
You worry less. Or at least not so constantly. Maybe only once a day, not once an hour.
You cry less.
You do find that overly used but-oh-so-true phrase – your new normal.
You will find what works for you.
What works for your child.
What works for your family.
Things feel less insurmountable.

You will feel whole again.

I’m not saying it happens overnight. Alex is 6 now and there are some days I still feel like I’m drowning in uncertainty… guilt… worry. But those days are fewer.

Without a doubt I – and we as a family – turned a corner when we discovered Swan UK. We found a group of like minded parents all in the undiagnosed boat. But with numbers comes confidence. And with confidence comes… well, the world.

This amazing group… we are a tribe. We band together to help each other online, in person, as much as we can. With help, advice and humour.

All saying: ‘You’re not Alone’.

Previously I never needed an online support group, had no idea what it would be like. But I don’t know that we would have made it through in as good shape as we have without them.

**April 28th is #undiagnosed Day and Swan UK’s mission is to reach out and find those parents of the 6000 children who are undiagnosed every year. Please help us find them and support them.**

https://www.undiagnosed.org.uk/join/


Mummy, are you telling them about SWAN again…? Tell them they are awesome!!

Guest Post from Alex…

Hellooo! It’s me :-)

It’s Mother’s Day today isn’t it? I know because Mummy keeps mentioning it. She says she does that because my big sister forgot it when she was 10 months old despite having remembered Father’s Day when she was 2 months. I don’t really understand how that’s possible?

But I didn’t want to come here to talk about Mummy. Even though, well, it’s the obvious day to do it. She knows I love her because I kiss her shoulder when she hugs me, and because I tell her with all my sounds how happy I am to see her when she comes in in the the morning… and because I bum shuffle over to see her when she comes in at night – and I shuffle as fast as I can. Arms outstretched. That’s how she knows.

And I know she loves me to the moon and back because she tells me a lot. And I know she loves me because she Will Not Stop Hugging Me. And I know she loves me because… well I just know she does.

But.

I actually wanted to talk about Granny. Which is not to leave out Nanny (hello Nanny!) because she is beyond awesome (*blows kiss*)… but I know that there are some things Mummy would like Granny to know, that she’s not always the best at saying. And Mother’s Day seemed like a good time for me to tell Granny instead.

Mummy knows you know I have changed her life beyond recognition. And she wants to thank you for listening to her as she talks about that. What it means. She wants to say thank you for not sharing too many of your own worries as well. Because she’s not sure she could have carried them too. She hopes very much that you talk to someone else about them though as those are thoughts and feelings and emotions… you can’t carry on your own.

She hopes you know she expected to spend more time with you than she has as we grew up. She hopes you know that sometimes it’s just too hard to gather us all up to do something together, but when she does, it’s such a feeling of Winning. She knows that spending time with other people is good for all of us so when she can – when we all have the energy – we do.

But it’s not like she pictured when we became a family of four. Because sometimes the places we want to go… they don’t work for wheelchairs, they don’t accommodate my need to flap my arms with excitement or squeal in delight or sometimes… there are just too many of those annoying stairs. Or hills. And nowhere for me to sleep. And she suspects it’s not like you pictured either. And she is sorry for that. Even though it’s noones fault. Even though it just Is.

And Mummy knows that sometimes you just don’t know what to do. For The Best. And she wants you to know that’s ok too. Because a lot of the time she doesn’t either. She just cobbles it together and hopes. That Winging It t-shirt? She really needs to own one.

But she hopes you know she values you. Values the fact that she can ring you whenever and talk to you about Something. Or nothing. Values the fact that you both weathered the storm of me, when sometimes you might not have done.

And she knows that you know she loves me. She loves me unconditionally. For all the… challenges… the railing at a system not set up for this modern life… She loves me just the way I am. And she doesn’t want you to worry. Because she would. If it was her daughter. But it’s important that you don’t. Because she thinks there are enough people and enough safety nets to catch us. Should we ever need catching.

(Because even though we are bullet proof, it’s always good to have a back up plan).


Really, what Mummy means Granny is that you’re a rock star…!

Having a right to play?

Everyone needs systems and processes.

If only to have some words for your actions to push against.

Just to see what might happen, what could change.

Which brings me neatly to… holiday playschemes… and the intractability of county and district council borders.

I never ever thought I’d write a sentence like that. Bear with me…

When Alex was at his lovely nursery which provided cover all year round from 8-6pm it was remarkably easy for us to be working parents. When he went to school it, of course, changed markedly. As it did for all other parents who made the move that year. As it did for us when Alex’s older sister made the move as well.

But here’s the difference. When we needed cover for our daughter, we had a few options. We had a brilliant childminder round the corner from our house who would take her when we needed and bring her home three nights a week to look after her, give her a safe environment and keep her fed. During the holidays we stitched cover together through a combination of both sets of amazing grandparents and some holiday clubs. She had and has playdates with friends. She had a great choice of activities available to her: swimming, drama, t-shirt painting, football club (only the once mind, never again…).

Whereas with Alex…

No childminder can have him because they aren’t set up for wheelchair access and anyway the care ratio he would need makes him impossible to accommodate.

His grandparents couldn’t have him – and I know they would have if they could – because he comes with a ridiculous amount of equipment and… well, they are older. Less able. And Alex is more than a handful.

Holiday clubs couldn’t take him because (in no particular order and sometimes we could tick more than one of these options): someone would need to stay with him, there weren’t any toileting facilities, there were steps to navigate, there wasn’t a lift… and, lastly, it was completely impracticable for a child with Alex’s needs.

His friends cannot come and play because everyone’s needs are so different. And noone has a house as big as the school hall it would need to accommodate them.

So he is isolated.

We found one playscheme. It was 20 minutes away at another special needs school. The scheme was consistently over subscribed but they always made sure Alex got some time there. They just… got him. Messy play, painting, water play, swimming, sensory rooms, soft play… all the pictures they sent home showed Alex just having a blast.

Somewhere new.

With other children.

Not with his parents (again).

Socialisation is so important for all children but especially so for children with additional needs, just because it’s so hard for them to get any. It takes so much more effort.

So this scheme was a godsend in that it fulfilled all the above and meant we were able to continue working. It can be a bit of a taboo subject when it comes to children sometimes, especially those with additional needs, but we both want to work and it is so important for us both. Not only because we need to put food on the table but also… self worth… a sense of who we are… a different purpose.

But then, as I submitted my form for the Autumn half term, the woman running it asked me to confirm where we lived. As it turned out that, through a small administrative error, Alex should never have been allowed to go to this scheme in the first place. Whilst the scheme was in the same county as us, the county – which takes over 2 hours to drive from one end to the other – has been divided into (still with me?) 5 district councils and 2 unitary authorities and… those wiggly lines made Alex ineligible.

I’d understand it if, right from the off, they’d said, effectively, ‘No, your name’s not down, you’re not coming in’… but two years in to turn round and say, ‘Oops’…?

Whilst I don’t wish to sound 7, it’s not really fair.

I don’t have any other options. We have previously tried another – brilliant – scheme in the right part of the county but it’s an hour away. So to take him, drop him off, go and get him and bring him home would be a 4 hour round trip for me. And 2 for Alex. That’s not sensible. There is another – supposedly brilliant – scheme 20 minutes away in the other direction but… it’s again in the wrong county and again Alex is ineligible.

The woman who I’ve been emailing and whose mind I’ve tried to change suggested an evening meet up session which is an hour away. And in the evening, when Alex is in bed. Because he is only 6.

Which leaves Alex stuck at home with the same adult caring team and us unsure how we’re going to get through the holidays.

All we’re asking for is – that word again – a more ‘holistic’ approach. ‘See the boy, not the county borders’… isn’t going to win any advertising prizes but that is, essentially, it.

playscheme

Mummy, really, I don’t get to go back? But it was fuuuuuuun…