Dear all
Ataxia UK are writing a new leaflet aimed at parents of children with ataxia. Below is a link to a short survey in order to help with this. We would be very grateful if those who have a child with ataxia could complete it.
Thank you.
Harriet
Is there anyway a package could be created for schools?. In Manchester they have a nurse that specialises in childhood Ataxias that actually go into the schools to educate the staff and train them in the condition.
Where do I get a leaflet? We were given a diagnosis and nothing more. We are fighting for counselling in the mental health system. My husband had a breakdown. I don't understand how they can give you a diagnosis like that but no emotional support.
Hi emmanik
Thank you for your post. I am so sorry about what you are going through and that you have been given little information about ataxia. Unfortunately your situation is not unusual.
You must get in contact with Ataxia UK, a charity that supports all people affected by ataxia in the UK. As well as funding and facilitating research to discover treatments and ultimately a cure for all the ataxias the charity provides support to those affected by ataxia in the meantime. The website is ataxia.org.uk.
You can contact the helpline on 0845 644 0606 or helpline@ataxia.org.uk. You can request a hard copy of the leaflet through this route as well as information about other available resources to you. It is free to join the charity.
In the meantime here us a link to the leaflet
ataxia.org.uk/Handlers/Down...
I hope this is helpful to you. Please do not hesitate to post on this forum if you have other questions or even if you just need to vent.
All the Best for 2017.
Harriet
Hi Emmanik, I totally agree. My daughter was diagnosed with (probably) post viral cerebellitis over 3 months ago now although this is not a definite but probable diagnosis. We were offered no physiotherapy or any other support whatsoever. Our 3 months follow up with a the paediatric consultant (with no specialist knowledge of neurological conditions like this) was a complete waste of time and we feel completely alone and in shock over what has happened to our little girl and the impact it has had on all our lives. I am so sorry for what you are going through. It is absolutely devastating.
I'm sorry to hear that. I think that your GP should be your first port of call. Get him/her to refer you to an OT and Physiotherapist. Also, I've had countless meetings with school and they have also requested the OT go in and look at sitting position, writing slope, use of computer in lessons, touch typing lessons, PE, etc. Even when the OT said to me, there wasn't the funding for it, the school insisted and we ended up with a great list of recommendations.
An OT has come to our home to see what adaptations we need and she's referring us for a grant to extend and has helped by telling us what products we need and provided them. She has this amazing mobility product catalogue in her head. We have a bath board from her. We have a bed guard and need another stair rail.
I have been proactive in asking for extra time to eat, change clothes, a more limited PE lesson (heart condition) and cold weather strategies. My daughter gets cold feet: if this happens she goes inside and can sit in the office with a book. She also has a blanket on her lap in lessons. Our senco has been awesome. With every test and report I've gone straight to her.
Read everything you can. You will be more clued up than many of the professionals you see. Tell them what you want. Someone told me ages ago, back when we thought it was only Dyspraxia we were dealing with, if you have a child with special needs you have to be prepared to fight their corner. It's so true.
Back up every conversation with an email. You don't say how old your daughter is. Maybe think about starting the Statementing (EHC?) process. (You get to choose your school!) It means everyone teaching your child is informed and her needs will be met and reviewed. We are doing this and it's been a stressful race against time before secondary school.
Fight for counselling if you need it. TBH I think making time to see a friend once a week might work just as well.
Just had a quick google of your daughters condition. It sounds like something she might get over hopefully. Have they ruled everything else out? Fingers crossed that this is something she will recover from but therapy will definitely help that to happen.
Good luck with your fight. I love that part because I feel like I'm DOING something and with a condition like FA that has no cure and worsens year on year, it gives me focus and positivity.
The shock will pass. I still have moments when the horror of it hits me but for the most part, we just get on with it. Be kind to yourself. Message me if you want to talk.
I'm praying your daughter makes a good recovery.
Thanks for the advice. My daughter is 7 and our SENCO is not proactive and does not seem to want to get involved. The school is doing a risk assessment since my daughter fell and broke her front adult tooth at school. OT have offered to send someone to school to help in that risk assessment and similarly come to our home, although how long that will take I do not know. I am going to go back to our GP and start at the beginning again in the hope that we can at least be referred to a neurologist who has experience of this condition. Thanks again, it sounds like you are being very strong in the light of even greater challenges. Good luck x
Hmm... a risk assessment sounds like it's to protect them. So what are they going to do to help your daughter? If the senco isn't helping, maybe talk to the head? Good luck with the OT. Ours didn't take too long. Perhaps she will be more useful in terms of recommendations to help your daughter. Try to talk to her before she goes into the school so you can fill her in on the Sencos uselessness and perhaps she will fight your corner or have ideas of her own. It shouldn't just end up as a risk assessment though, I'm sure there will be recommendations that benefit your daughter. It's a good thing that she's on board. Ask to be copied in to the report after the visit. Then get ready to harass the senco so that recommendations are carried out!
You can also make meetings with your daughters teacher. She might be helpful in putting strategies in place. Even things like where your daughter sits in the class can help. My daughter sits at the front so she's closer to the door. Her classmates are informed of her balance issues so they don't jostle her and they know it's not her fault that she can't run or catch a ball. They are also kinder to her because they understand. This was all down to the class teacher.
Keep battling with the senco. I go in with a list! Is there a family support worker you can see? Also have you spoken to someone from your county council in terms of disability help? You can get a blue badge, disability benefit, a card so you get in free to loads of places as a carer... the list goes on. I found it a bit shocking being referred to as my daughters carer rather than her mum, but it's the way it works.
You can also talk to the county council about what the school could or should be doing for your daughter.
We have a Wii fit with a balance board that's good for physio. Any of the balance games are perfect. They will really help.
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