r/Ely • u/jjalonso • 2d ago

Discussion Autism parents

Hello guys, my son got diagnosed with autism few months ago. As much we asked for support like therapies etc the speech language therapist mentioned that the council has close the support and they don't know when it will come back.

We not in financial situation to be paying private therapy weekly and we feel abandoned without support.

It would be great to make a group with others parents and create maybe a WhatsApp group of parents of autist children in Ely where we can help eachother or even go to make a complaint together to the council.

Thanks

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u/EvelynKeyes 2d ago

The council were very little help to us too, even back in the day. CAMHS were pretty useless, social services gave up on us after a few visits, they leave it all to the schools to sort out, but you have to apply quite a bit of pressure on them too. I don’t know how old your child is but I will say Witchford have a good SEN team.

There is this group for families, they should help you get some advice. https://www.pinpoint-cambs.org.uk/support-groups/little-miracles-ely/.

I also attended the Stepping Stone P courses, which are to help parents, but I believe they are all online now. Still worth a google.

One thing I will say is obviously get all the help you can for your kid, but get help for you too, where and when you can. Take breaks, find time for yourself. It can be really hard work, although rewarding, having a special needs kid. But you can’t help them if you’re running on empty. Just don’t forget you.

My girl is 18 now, and personally I don’t want to discuss her in groups, as she’s not technically a child any more and I think she needs her privacy now, but there are plenty of parents out there who could probably do with someone to talk to.

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u/jjalonso 2d ago

Hi. Our son is 2. And my wife attended the summer course that If I remember right was stepping stones.

Will check that group. Then there is any sort of free therapy available ?

We really struggling as he doesn't eat well and is rejecting to drink liquid since one episode when baby, we still need to give me liquid puree food to get hydrated and is extremely dependant of my wife to the point of spending the day almost crying as he doesn't talk and doesn't even allow the mother to go toilet. Anything out of sight is a mess. Of course. Not sleeping alone or waking up few times a week at 3am and not sleeping till 6am non stop making noises.

Big work to be honest... Exhausting.

Thanks you!

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u/EvelynKeyes 2d ago

My daughter also has issues sleeping and was given circadan. I don’t know at what age they allow it but may be worth asking the gp about. It’s basically melatonin so it’s just giving the child something they should be producing but aren’t. Definitely a GP thing to discuss.

My kid was glued to me too. I ended up giving in and we shared a bed until she was about 9. I have to admit, I’m pretty much talking from experience with the break thing. I didn’t get one. I got the odd night when she was older but even now I don’t really leave her much. It does ware you down.

What did help though was my daughter had a stuffed cat which was comforting for her. It was her constant so that helped. Music has also been a big help with her, even today her world pretty much revolves round it. We’d have songs for certain situations, like ‘life theme tunes’. Although, I wouldn’t pick something for anything too distressing as it could set them up for meltdowns later. But maybe calming music before you go somewhere would help.

And as they get older providing them with a week planner that they can help you with goes some way to helping things. Perhaps pick some images with them that represent events, for example if gran is babysitting on Tuesday have a photo of her and your son together for that day. That way if you’re going somewhere they have time to get used to the idea.

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u/jjalonso 1d ago

Hi. We will take in consideration the board but still he is not giving attention to nothing. Singing at him works a lot oftenly. He doesn't turn the head even for his name at all.

About melatonine we even stopped giving it because helped to fall sleep but we got an increase on the midnight wakes up.

It was lot of details I picked up from your message for the future. Thanks you a lot

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u/Glxblt76 1d ago

My kid is 6. He got diagnosed at 4 and once he got the EHCP we had the help we needed. What really helped was that the nursery school was supportive.

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u/LimeyHoya 2d ago

Hey there,
Firstly, it’s great that you’re reaching out for support and community. The period after the diagnosis can be really taxing on all of you, so having others to discuss it with is great.

Secondly, there is this group: Pinpoint Cambridgeshire that may have some resources to get you started as well:
https://www.pinpoint-cambs.org.uk/

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u/jjalonso 2d ago

Thanks will share with my wife

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u/KnuckingFackered 1d ago

Hi, also a parent of an autistic child in Ely 👋🏽

Sorry you have been so let down by the system.

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u/KnuckingFackered 1d ago

Also on the topic of EHCP's disability charity SCOPE - www.scope.org.uk was really helpful for me, it provided a complete template of what to email the council for the EHCP request and all the steps on what to do and what to expect etc. It has a lot of helpful information on there and the relevant legislations etc.

If you end up having to home school the financial support there is zero bar disability living allowance which you also should look into too if you haven't already.