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Hi, my name is Charliesmam and my 9 year old son has CP.

Charliesmam

Charlie is 9yrs old and has cp. He walks unaided but the lack of physio, swimming and riding caused by covid this year has left him tighter than normal. We have a lot of behaviour issues too.

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Charliesmam

It's an assessment to see if he's a candidate for sdr. We've been under the team for 2yrs now but they've been waiting and trying to get hi. Help with his anxiety around appointments so they can examine him. He doesn't cope with appointments at all.
They referred him in to a psychologist to help but then covid came to play didn't I. All his face to face appointments were cancelled with her. She did fortnightly telephone appointments with myself discus fight or flight mode, calming techniques, emotional regulation. It helped massively through lockdown if I'm honest. However, she's now left the team and they wouldn't keep Charlie on with no appointments booked in to work with.... So now he's been discharged. We have a hospital plan to work with but at the end of the day it's a piece of paper and we've not tried it yet.
He knows about sdr. He actually said he wants to have the surgery if he can, to see if it can help him. He had lengthening surgery a couple of years ago and coped extremely well with it. The effects lasted around a year. Now he's very very tight again. He has definately deteriorated over this year with covid. He does all his stretched at home and takes his baclofen etc but he's still n I t allowed back to riding and he's onky just started back up at swimming. He onky gets 30mins a week in the pool too as it's not open for public swimming yet. We have seen a bit of an improvement since he's gone back to school. I'm guessing it's because he's being made to go out more.

Charlie's physio wanted to refer him for sdr when he was 4. I actually said no at the time as I was pregnant and it was all too much at the time for our family. I couldn't commit all the time for that with a newborn. I've regretted it ever since, but I really don't think I'd have had the time. Since then I've gone part time at work. I work on an evening so it means hospital appointments don't cause any bother with that.
It's a tad stressful isnt it?!

Richard_Scope

It certainly sounds stressful but in saying that you must take great credit for having things so organised despite the pandemic and Charlie's additional needs alongside his CP.

Charliesmam

Being a parent is stressful enough without additional needs and pandemics isn't it. Just one big new challenge. I've learnt iver the years that I need to make time for me now. I'm seriously hoping we Do nit end up in another lockdown as my parents have the kids 2 nights a week. On a Thursday we both work so its childcare, on a Tuesday its so we can have time alone together. When we didn't get that break for so long we were at breaking point, as we're the kids. I'm sure it's the same for most families.
At least we are all safe and well and that's the main thing. I've well and truly had enough of covid now though. It feels like this nightmare is never going to end.

Charliesmam

Can I just ask, I'm. Pretty sure I know the answer already....

If we go into another lockdown or a local lockdown we will find ourselves in an even tougher situation than before. Charlie will get more aggressive and violent. At the moment my parents have him 2 nights a week while we work. We don't finish till 11pm. Am I expected to then go pick the kids up at 11pm??
Also, it's our support network gone if we cant go to them for support. At the moment if Charlie goes into meltdown we can ship the other 2 off to grandma so they're not here to add to the stress or get distressed themselves.
Dont get me wrong, I understand the necessity of it all BUT I honestly don't think I will survive another lockdown with no support bubble. Its so unfair that if we weren't married we could still have it. Really starting to panic about it all now

Richard_Scope

Hi @Charliesmam
Your support bubbles will be able to stay in place so Charlie can still go to his grandparents. Pubs and restaurants have to be closed by 10 pm.

Charliesmam

I mean if we go into a lockdown. When they say we can't meet other households that means we cant see my parents doesn't it?

Richard_Scope

If there is another full lockdown the rules may change. There is no way of knowing for certain. I hope these latest measures bring the numbers under control.

Charliesmam

Fingers crossed. I think we all want this over and done with now don't we.

Charliesmam

Just received Charlie's sensory diet through the post from the occupational therapist. Now I need to convince him to go on the swing in the garden before breakfast. Fingers crossed it helps.

Richard_Scope

Charliesmam said:

Fingers crossed. I think we all want this over and done with now don't we.

We do!
We have they recommended that you get Charlie to go on the swing before breakfast, is it to help calm him?.

Charliesmam

They're wanting to try him with a sensory diet to see if it helps him regulate throughout the day. We're going to try at home first for 3 weeks then they want a multi agency meeting with regards to his needs and then impliment something in school too.

Charliesmam

Richard_Scope

I see! That is really interesting.

Charliesmam

Wish us lukx. The nurse from lmthe sdr clinic just called. We have a virtual appointment Monday 5th then a face to face appointment and assessment on Monday 12th!

Tori_Scope

Good luck @Charliesmam! Let us know how it goes

WestHam06

Best of luck with both of the appointments @Charliesmam, I hope they go well. Please let us know how they both go. Thank you

Richard_Scope

Wishing you and Charlie the very best @Charliesmam! Let me know how you go.

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