Sensory processing disorder and ASD

[Saz-loui]

Hi we are a family of 5 including our doggy lol. My daughter has been diagnosed with ASD after years of struggling but more because she suffers with sensory processing disorder. Her needs for sensory make everyday life difficult but more for her she struggles with low tones, whispering , carpet sounds, breathing, clothe sounds , singing and most of all anything begins with H sound :(. I know help in the uk is so difficult does anyone else feel the same. I've started a petition

petition.parliament.uk/peti...

To get all the uk to learn more some health professionals have no idea as I work for some and been told by my paediatrician my daughter is the only child she knows who suffer she like my daughter.

Our son is amazing and has more knowledge than we do in helping with not using any words beginning with H

Thanks for ready please sign and share

[emmasue]

Signed and shared. Our son has autism and he has a lot of sensory seeking behaviour. We get very little help, but at least an EP has confirmed that he has sensory issues. Unfortunately the school refuses to pay for an OT assessment. Our daughter as well suffers from noise. The school had refused to allow ear defenders until she had a new teacher this year that allows her to keep them in her bag for when necessary. This was after an autistic child in her class gave her her ear defenders when she noticed my daughter was suffering. Sometimes the children are more compassionate and understanding than theachers are!

[Saz-loui in reply to emmasue]

Lovely thank you do you mind me asking what area you live in? Definitely agree school need to do something more to help and understand. My daughter wears headphone ear defenders that way she can listen to music and feel 'normal' thank you for your post x

[emmasue in reply to Saz-loui]

We live in Nuneaton (North Warwickshire). We have to fight for every scrap. It took three years to be assessed for autism (at nearly 11). We are still waiting for our daughter to be assessed (she is 8), although she has had issues from the age of 2. It's so frustrating.

[Saz-loui in reply to emmasue]

Know that feeling our daughter has just turned 9 we took her back and forth since she was one! Started fighting for appt when she was 5 and diagnosed a few weeks ago only after paediatrician witnessed a melt down and after camhs had seen her sensory was diagnosed last year and was told no help now we have both diagnosed we are no better off for help at all x

[emmasue in reply to Saz-loui]

No, there's no help for a diagnosis. The only change is that the school is a bit more helpful. I am hoping that in our daughter's case we can get an EHCP. I think she needs more help. Unfortunately, the school disagrees. Hopefully you get more help soon. x

[Saz-loui in reply to emmasue]

Fingers crossed keep me posted we have gp appt in April so I'll keep u posted

[emmasue in reply to Saz-loui]

Thanks, you too. We are waiting for the EP report and the CAMHS assessment. Will let you know. x

[SMB21 in reply to emmasue]

hi i am guessing you have to constantly push this forward and not just sit back and rest on your laurels or wait for the NHS to contact you ?

[emmasue in reply to SMB21]

Definitely! We have just taken on a tutor for our daughter, despite not really being able to afford it, just to help her academically. We have got the EP report but the school still hasn't responded. I am waiting for her teacher to set up a meeting. It should only be a few more weeks until CAMHS see her. We constantly feel like we are banging our heads against a brick wall trying to get answers and help. I just think there isn't much help out there.

[SMB21 in reply to emmasue]

It's great to see you are pushing it though and doing what you can for her ..... I have the opposite this is about my partners son not mine and seemingly him, his ex and grandparents who are his main and only contacts outside of school just let it ride .... I've found him help with eating disorders, suggested groups like scouts to help get him involved at the time he was up for it but because I am not pushing it nothing else has been suggested for 2 months, I'm feeling like if I don't keep pushing things then nothing happens and he's not even my own flesh and blood but I am concerned for him when he struggles in a few years adapting to taking things literally he has no sense of humour or irony and barely ever uses my name or says hello/goodbye unless prompted or reminded

It's very exhausting as so many things have been done for him so everyday things like choosing his clothes, cleaninliness etc..., tying shoelaces, using a knife and fork all been taught recently by me and by pushing him but it's exhausting me and I ha e no time for me but I know if I let it drop his dad will be happy to let him fester in his room playing on Xbox all day

I just don't know what to do anymore 😢

[emmasue in reply to SMB21]

Poor you! It must be so hard, especially since you have less authority over the child, but it looks like you care so much. I hope you are able to continue to help your partner's son. I am sure when he grows up, he will realise who has been there for him. Try to think of the good you are doing when the struggle is hard. I know sometimes it would just be easier to give up. Take care and I hope things get better for you and your family. x

[SMB21 in reply to emmasue]

Thank you so much for your kind words but I am fighting a losing battle at the moment, wouldn't be so bad I guess if he was my own flesh and blood but I do enough for everyone as it is I think I am going to focus on myself for a while spent last 20 years working and bringing up my own boys, the last 5 years mostly on my own I haven't got the fight or the energy to do this for no appreciation sorry of that sounds selfish 😢

But thank you for your replies I'm most grateful x

[SMB21 in reply to emmasue]

my partners son who i firmly believe is on the spectrum has been under child development services since he was 4, hes now 11 and still no diagnosis ....