Hello I am new

[Stephb]

I am mum to a 9 year old son, Jake and he is the most amazing special little boy. He has border line learning difficulties which have been caused by Mitochondrial Disease. Things are changing all the time with Jake and I struggle to cope with it. I also have mitochondrial disease but I don’t have learning difficulties but I have lots of other issues and I seem to constantly be at appointments. My husband is amazingly supportive but I still struggle with all the changes

[SarahL]

Hello @Stephb

Welcome to FamilyHub - it is lovely to hear from you.

It is wonderful that your husband supports you and your son but is sounds like you have a lot on your plate.

Does Jake get any extra support at school?

Do you have any contact with your local Mencap? There are lots of different groups all over the place - have a look and see if there is anything that appeals near you: https://www.mencap.org.uk/search/groups

If you’d like to talk to someone about how to get a bit more support call our Learning Disability Helpline on 0808 808 1111. Our advisors are available from 9am to 3pm, Monday to Friday.

I really hope this helps and that other parents share their advice on here too.

Many thanks
Sarah

[frances_is_a_sibling]

welcome to the familyhub @Stephb It can be really hard to keep up with things changing so often - it sounds like you’ve had a lot to deal with. You’re not alone in this - lots of families struggle with this. Do you go to any face to face groups for parent-carers? Really glad to hear your husband is supportive.

[Stephb]

Hi thank you for replying. I managed to get Jake into a fab special school last year and he started there in September. Although it is great I feel totally overwhelmed by everything and I struggle to accept his learning difficulties. I think so far we have only really focused on the mitochondrial disease and never looked at the LDs on its own. I will have a look at the link and see if there is anything there that appeals

Thank you

[Stephb]

Hi. Thank you for replying. I don’t go to any face to face groups to be honest I can’t say that I’ve heard of any. I seem to be so busy all the time with appointments for both of us, I once had 6 in a single week, I don’t feel I have the time

[frances_is_a_sibling]

That sounds really busy, I can imagine how hard it is to get to a group. In terms of online support - as well as the Mencap Family Hub there’s also a forum on carers UK and I’m sure there will be facebook groups too - just knowing you’re not alone can be a comfort. Keep in touch and let us know how things go

[charlie1]

Hello Stephb
It is difficult coping with other children but you still have the same problems but possibly for a lot longer.As Sarah points out there are groups about.There is another group called Escape but I am not sure if they are National or UK wide but they give support for carers of infants and school age children .They do social trips out and sometimes short breaks for family.I know this because a friend goes away with her son(but he is an adult) and they go to Cardiff for weekend and Legoland but they are Somerset based.Finding a family with similar situation can be supportive.Sometimes some carers do not want to join groups of similar probably because of embarrassment or being labeled(cant put it sensitively enough) and so they may struggle on without help.There is a stigma amongst people not in the know.
My son is 32 but he does not appear disabled.Little old ladies have said in the past “you cant use that toilet it is for the disabled” and I corrected one lady for using the word “retarded” when she was talking about a college in Cannington that works with children doing life skills.(Sadly this lady probably does not understand the more modern and correct terminology…
We have a small Mencap group in my area which organises trips out and skittles each month All my friends are so supportive.Good luck.

[charlie1]

Sorry but it seems that ESCAPE is a group only in Somerset but there may be other groups and Social Worker may know of these.The school themselves may have social groups also. Best wishes.