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Footwear for splints
Hi all I am looking for some advice/experience. My 2 year old daughter with PVL and diplegic CP has recently been given splints to try. We are very keen to try them HOWEVER are really struggling with finding suitable footwear that the splints actually fit in! We have tried lots of different styles and sizes but none…
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Appointments
Hi I need some advice. Daughter has Mitochondrial disease which presents that she can’t walk and has maybe mild learning difficulties. Split with wife in July and almost divorced. However despite attending every medical appointment since birth (and there’s been a lot) I’ve not been able to since the split as relations are…
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Difficult times
I'm a disabled mum of 3 autistic children . Finding everything to much to bear. No services for my daughter to support what I'm going through Suffolk support is ridiculous.
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Teenage Daughter with Autism and a mum with Fibromyalgia
Hi everyone I hope you are all well, I’m new to the group and am hoping to find advice and gain knowledge by reading some of your posts. I have a beautiful girl who’s 15 and really struggling with herself and school, while I am currently struggling to deal with my pain every day having Fibromyalgia. I also have two boys…
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How can I check he is being charged correctly?
:) Hello everyone, thought I would join the forum to gain more information due to me being carer to an Autistic son, and also give help with any issues that I have come across that may help other carers.
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Down Syndrome
Hi all I have a 26 yr old daughter with down Syndrome mosaic.Are there any members on here with a child with the same diagnosis.
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Childcare, Babysitter - who do you have to cover for you if you need it, and how did you find them?
Hello everyone,I am Mum to twins who both have disabilities. In my view they are fairly mild: both can speak and are bright, one of them can walk unaided, but they are less independent than their peers and have personal care needs, and maybe a heightened sensibility as to what they might need. They are 8 years now, and…
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Help son with reflux but i think more
My son was diagnosed with reglux at 6 weeks, at 4 months started being ng fed, at 1 year had a fundo and a peg fitted. Hes now 17 months hes still on all reflux meds, still wont eat. Has black poos regularly is uncomfortable all tge time, drinks bottles of juice like its going out of fashion this is the onky thing he…
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Carers help
Hi everyone, I am the mum of a 34 year old man, who is wheelchair bound because of cerebral palsy, and has suffered severe mental health problems, I am 71 years of age. My son is entitled to a direct payment, and for the last seven years he has been using it to take him to and from the gym, and to get out and about, this…
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DLA claim - 4 year old with CP.
I have tried to apply for DLA for my 4 year old who has cerebral palsy, it has been declined, I have appealed the decision, and have been waiting for a date for the tribunal. I’ve finally got the date and it’s coming up very soon. What should I expect? What kind of evidence could really help that I could of forgotten? I…
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Struggling to make friends at new high school
Hi, my son is 11 and started high school in September. He hasTourettes, non-epileptic seizures, anxiety and possible ASD. I am worried as we are nearly at the end of the 1st half term and he has not really made any friends. He was so sociable and had lots of friends at primary school and played football outside every lunch…
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1yr old with mild cp?
Hi, I'm after some advice really. My daughter is one year old, we noticed when she was about four/five months old the she didn't really use her left hand and that it was often fisted. This became more apparent as she started baby led weaning. We also noticed her left foot was often clenched, she also suffers a lot from…
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Emotional support
Hi My daughter who is 9 has a progressive muscle disorder which requires her to use a wheelchair and wear AFOs day and night - still undiagnosed after 6 years of tests. She is suffering emotionally and is really down, she is expressing self hatred a lot and has secluded herself from her friends at school and is usually by…
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Rett Syndrome
Just wondering if there are any parents caring for a child with Rett Syndrome?
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Deputyship
hello, just starting to look into deputyship for child coming up for 15yrs age, like to plan ahead as everything takes so long and she will not have mental capacity. Do we involve child social services or just get on with it, looks like £365 initial payment then yearly fee and parent does annual report justifying actions…
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Carers Backdate
Hi, I am new to this after becoming I'll in April, I eventually got my pip award this month after going through a reconsideration. Pip was backdated back to June will carrers be backdated to that date, my wife has applied already And UC are already paying us ? Thanks in Advance
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School not understanding my child SEN Plan help needed
my daughter is on an SEN plan. Her current targets are two that are linked to her learning like to try problem solving in maths. Then she has to go out and access the schools emotional support group (thrive). I have her review meeting coming up. I’m wondering what I can ask for or what I can suggest as targets to improve…
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Is it time we asked for help...young adult daughter
Hello. So we're parents of a 19 year old daughter who was diagnosed with Aspergers 5 years ago. She started Uni last year but she's struggling so much. Stays in her room and won't go into the shared kitchen terrified in case she sees anyone and is starving herself as a result. All the predictable stress of moving from…
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Mind and Body
I'm wondering if there's anyone in the same boat as me. I'm a single mum with a great son 34 who has Aspergers. He helps me a lot due to my arthritis in my back.legs and knees. I have also been Agoraphobic for 12 years.Therapy didn't help so I was prescribed Diazapam. They gave me my life back but, I'm now on a slow…
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Cooking with a physically impaired child?
Hello How do you manage to cook food? I want to teach my son cooking skills. But since he is a full time wheelchair user, standing up is not a option. Are there any aids, and pieces of equipment that would help? Any advice will be greatly appreciated. I have no clue where to start. My son is a paraplegic due to spina…
