Myself And My Child Have C/A

[Sphinx21]

Hello Everyone I hope you are all keeping well , has anyone else got c/a and currently looking after a child with c/a full time because of current circumstances ( ie coronavirus and schools being off) we have been told to shield and I suffer with extreme fatigue also I feel shattered and no one in my house seems to understand it’s making me feel quite low and inadequate .

[wobblybee]

Hi🙂

It must be quite a challenge coping with the needs of a child 24/7, and having the overwhelming fatigue associated with ataxia. My children were teenagers and fairly independent when I first experienced this sort of thing, but I well remember just wanting to lie down and sleep until the exhaustion passed. And, sometimes I just had to, I’d sleep for a couple of hours.

🤔There are Medications to try that may alleviate symptoms for you, but the main thing is to try not to multitask if possible, not easy I know, but it will tire you even more and aggravate symptoms.

It is hard when your nearest and dearest doesn’t understand exactly what you’re coping with. I’ll admit that for many years my husband simply told me to pull myself together, and ‘it’s all in my head’. It does make you feel low and inadequate..

🤔 My Neurologist gave me what turned out to be good advice. He suggested I would benefit from a course of antidepressants, mood enhancers. I wasn’t keen, not liking the thought of having to depend on antidepressants, but it is common for people having our diagnosis to feel low. I found the medication helpful, and didn’t find I needed it long term. 🙂xB

[Sphinx21 in reply to wobblybee]

Hi ☺️Thankyou so much for your reply it means so much speaking to someone who understands your words have given me encouragement and mood enhancers are something that I have been looking into and think a positive step in the right direction . Thankyou for taking the time to care 😊

[majajefferies]

Do you have a social worker/EHCP plan for your child?

The council should provide carers to help you with taking care of your child.

My son has DRPLA (a rare form of SCA) and I self referred to the Council for an assessment of our support needs, we were offered 5 hours 1:1 care per week, got community care solicitors involved and he now receives 24x7 2:1 care. I can’t tell you how much this has changed all if our lives for the better.

I enjoy all three if my children and can spend quality time playing and engaging with them and when I can’t I know that they are safe and happy.

Please ask for help and if it id not provided ask again and again and again until you are happy with the provision.

Also, everybody will try to make you feel guilty by saying the words any mother dreads (as the guilt kicks in immediately!), “parental responsibility “.

Well...

By law, as parents we are responsible to take care of our child inly up to the level of meeting the needs of a healthy child of the same age. Everything over that level is the responsibility of the social services and health. So, a 3 year old’s needs will be higher than the needs of a 15 year old (this is looked at in terms of hours per day), but any needs caused by their ill health are full responsibility of our government to meet and to support the family in coping with.

It took me a very long time to learn all of this and I wish someone told me about all the support which our families are entitled to but none of is just handed to us, we have to request every single thing and then fight yo achieve our tights. Money is always budgeted and we won’t be allocated our entitlement unless we ask and ask and ask again, which can be tough at the time but pays off super quickly once the required support us in place.

Please seek help!

[Sphinx21 in reply to majajefferies]

Thankyou so much for your kind and helpful/ thoughtful advice my daughter has a EHCP plan and has complexed needs going to a special needs school I was just reaching out as I give my all to my family esp my daughter and leave myself no reserves it’s such a comfort to know there are lovely people on this forum that take the time to listen and understand and want to help Thankyou so much bless you !

[majajefferies in reply to Sphinx21]

I know almost exactly how you feel!

Ryan goes to a special needs school, but they haven’t given him a space in 11 weeks.

I had a very long conversation with the head about safety vs quality of life as realistically Ryan does not have the years ahead of him to enjoy life in between work, he hopefully has a few relatively pain free years left on this planet and denying him social engagement, physio, daily routine in order to keep him “safe” at home, bored, lonely and frustrated is just cruel!

Do you have any care support?

Social worker?

Enjoy your daughter but be realistic, prepare for progression of her illness now by ensuring sufficient care provision for her is in place independently of you.

M

[Sphinx21 in reply to majajefferies]

Dear Majajefferies

Sorry I haven’t replied sooner the days seem to fly by don’t they , my heart really does go out to you and I am touched by your kind words I do have a care support ( on hold at the moment) I hope your Son has been able to return to school to all be it on a part time basis for his social and mental wellbeing and to give you a much needed break .