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A family of multiple complex needs

Trixter_82_

Hi, we are a family where we all have conditions. So my partner this week, was diagnosed autistic, we have 2 children diagnosed autistic also, one of them has mobility difficulties as well and requires physiotherapy and specialist insoles made to support her feet. And I have mobility difficulties and struggle with hip pain also to add to all our difficulties.

I am currently fighting to get support we all need. And it's really effecting my mental health. My partner lost his job of 6 years, in November of 2020, and he has been out of work since. So as you can imagine, we are struggling with money. My 2 children get dla, which we use to fund a car that is needed with having 2 children on the spectrum esp one with mobility difficulties and we have put in for pip for my partner and my mobility difficulties too.

I guess I'm just trying to reach out to see if anyone else is in same boat as us? I feel so isolated atm as getting out is really hard and my kids are home educated atm until we manage to find suitable schools for them.

They have been out of school a year now and I've been fighting through the system to access support over a year too. We do not have a support worker as the last one was useless. Didn't understand autism in the kids, and was just merely there as collecting info rather than supporting us. She was very judgemental as well.

Just at my wits end now.

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Comments

Alex_Alumni

Hello @Trixter_82_ thank you for reaching out during what's clearly a difficult time for you. I hope you can find some support through this community, I certainly don't think you're alone in this. To help other members find your post I've marked it as unanswered.

I'm really sorry to hear your partner lost his job, does he know about Scope's Support to Work programme? Please do take a look when you can, as the team may be able to help.

If you need any assistance during the PIP application process you're more than welcome to ask the community, who are very knowledgeable on the subject. How is it going at the moment?

I'm also sorry to hear about your previous support worker, that sounds frustrating to say the least. Have you spoken to anyone involved about what happened?

If we can help with anything further, please don't hesitate to ask, and hopefully our members can share their experiences with you soon.

Alex

Danielle_2022

Hi there @Trixter_82_,
Although I don't have any lived experience of this myself, I did want to share this BBC article, which covers how disabled children and their families have been forgotten during the pandemic. If nothing else, I hope it shows that you're absolutely not alone. You can also always come here for advice or support, should you need it. We're here to listen

Nicetomeetyou22

@Trixter_82_ I know how you feel as we are also a family of disabilities we have 6 children 3 of which are complex needs I suffer with autism aswell as a small cyst on the brain anxiety/social anxiety and osteoarthritis you are not alone hang in there you can do this if you ever want to chat please feel free to give me a shout 😊

MelindaKy1

I'm planning on migrating to the UK this year for better schooling opportunities for my son. He's 8 years old with mild intellectual disability. And I just can't find a school to meet his needs. He's still not fully potty trained. Has bad social anxiety. Still can't read simple words and have completely clocked out at school at this point. He's considered high functioning because he's not on the autism or aspergers spectrum. So my local authorities only give SEN in his mainstream school environment which has resulted in him being way below the school spectrum. Where I currently live you can expect 20+ children in a class with only 1 teachers aid. I'm looking for a school that is for moderate disabilities which can focus on more individualize learning programs. He takes a very long time to learn and retain information and need the simplest concepts broken down further. He's over energetic, under stimulated/ disinterested, unable to focus, have a hard time sitting still. Has full on tantrums at 8. Has an absolutely issue with structure and authority. Will comply, learn and is well behaved when doing things he enjoy. He definitely processes information in a different way. Once he gets the concept or fully understands the situation he'll never forget it. I just can't find a school that suits him and don't want him to become a teenager or adult that can't function in the real world.

Ross_Alumni

Hello @MelindaKy1

Thanks for posting, and welcome to the community.

Sorry to hear about the challenges you are facing with getting your son into the right school for him, and getting appropriate support. Have you considered contacting somewhere like IPSEA to get some professional advice in this area?

Nicetomeetyou22

Hello @MelindaKy1 nice to meet you 😊 I have 6 children 3 have complex needs 2 of my children are already in a special educational school here in the UK and they have come on leaps and bounds atm I'm in the middle of fighting our council for a EHCP for my youngest son who's in reception at the minute he has autism speech problems learning difficulties hypermobility and sensory issues so hoping he gets his EHCP so he can join his brothers in the same school if you want to ask me any questions please feel free to ask 😀