Do you find there is enough support for parents and carers?

a_controversial_mind

Hi everyone, I’m Charlotte. Mother to Chayce 6 and Remii Lorraine 10 months.  Chayce was diagnosed with Autism when he was 2 years old. I’ve since given up my business at co founder to As1 - a community group for parents of children with disabilities and special educational needs. We’ve found the work we do is very much needed and has been very popular. We are currently in the process of registering as a charity. 
Do you find there is enough support for parents and carers? 
I personally feel that we often get forgotten. 
When a child’s needs are centre of attention, who focuses on the parents?

i read that somewhere this morning and it stuck with me. And it’s so true. Parents are often forgotten about but it’s important that we take care of ourselves too. 

Antonia_Alumni

Welcome to the community @a_controversial_mind thank you for sharing this with us. Yes, it's very important for carers to take care of themselves too.

I have moved you over to our parents and carers discussions, where our members will be able to answer your questions. You may also be interested in our Autism and Aspergers discussions too.

a_controversial_mind

Thank you so much Antonia x

Kate_Scope

Hi @a_controversial_mind and welcome to the community. 
I think that you are right, there has always been a very large gap in support for parents. My daughter is 18 years old and is a full-time wheelchair user, (CP and epilepsy) The way I sought support was through the scope website about 16 years ago- when it was in its infancy. I found so much support within the community. 
Other parents told me where to go when health professionals didn't. 
I now realize how much we had to look after ourselves in those years, we had to get enough sleep, eat well, try and take some time for us- which can be so hard when you are trying to juggle appointments, family and work. 

I decided some 10 years ago that I would look after my own wellbeing as much as my daughters, this was the best thing I did as I could handle much more pressure throughout the day and this made me much more resilient. 

I wish you well in registering as a charity and I really hope that you can support parents through this time and reiterate to them how much thier own wellbeing is just as important


Kate