Asd ds worsening issues please help!

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My ds aged 7 has asd. Hes in a special school with limited speech. He was awarded salt and ot in ehcp but la dragging their feet and that's another story. Some behaviors have become unbearable and im not sure how much more I can take. Last year he went through an hysterical laughing phase, now he screams. He screams whenever my and dh speak to each other. He has toilet issues where he'll have a number 2 and play with it. Hes now holding saliva and food in his mouth and then dribbling it after holding it for a while. Previously asked la for respite but of course declined and im desperate!

This sound exhausting and not some thing I’ve experienced and I hear you’re tired and struggling.

My general advice is to seek out advice and support from far and wide

• disability social worker
• parent carers forums and facebook group and meet ups
• Will he wear defenders?

Thank you @Dontwanttobeanebsnamum
He will wear ear defenders
We contacted social worker end of last year for help and was turned down for personal budget to get some respite. Ive appealed and of course waiting to hear. Im active in a local parent group and social team delays are a reoccurring trend

Thank you @Dontwanttobeanebsnamum
He will wear ear defenders
We contacted social worker end of last year for help and was turned down for personal budget to get some respite. Ive appealed and of course waiting to hear. Im active in a local parent group and social team delays are a reoccurring trend

Go and see your GP and tell them how you are feeling, be completely honest. The same with social worker. There was an awful case recently were SEN Mum ended her child’s life and then her own because she could nolonger cope. They will be on higher alert about people’s mental health. Some times (all the bloody time!) you just need to keep knocking on doors to get any where.

Is SALT and OT detailed, specified and quantified in F of the EHCP? Or is the wording vague and woolly? If the former and it isn’t being provided, write to the Director of Children’s Services reminding them of their duty under section 42 of the Children and Families Act 2014 and informing them if they fail to ensure the provision is provided you will be forced to pursue legal action. If that doesn’t work, you need a pre-action letter. SOSSEN can help with that, but there is a charge, so you may want to look elsewhere. Then, if the pre-action letter fails, JR proceedings will resolve the situation. However, if the wording is vague and woolly, it can’t be enforced and you should request an early review to try to tighten up the wording.

Does the OT include sensory integration OT?

When you asked for social care assessments, did the LA refuse assessment or did they assess but refuse support? When you say you appealed, do you mean you complained? If so, when was that? If it was last year, they should have responded by now. If the complaint didn’t resolve the matter, you can ask for an independent review and if necessary complain to the LGO. Depending on specifics, JR may be possible.

If you ever have to appeal the education side of the EHCP, you can ask SENDIST to also look at social care provision, getting an independent social worker assessment if necessary (if you can’t afford independent assessments and you aren’t eligible for legal aid Parents in Need can sometimes help fund them). And some social care provision is actually special educational provision so should be in F of an EHCP.

Also look at your LA’s short breaks offer.

Have you checked for a sore throat or mouth? That can lead to holding saliva and food in the mouth.

The screaming could be a stim. The toileting issue and holding saliva and food in his mouth can also both be sensory issues.

@perpetualplatespinning its in Section F and hours given. Its an issue currently in hand rest assured! But thank you. I

Hi
Just wanted to say you are not alone. My son has PICA, ASD and learning difficulties. Is toilet trained but soils himself maybe 4-6x a day. Has no danger awareness and does things like put his hands in the toilet. Literally eats the entire garden and if you take him to the park he will eat the tarmac.
It's exhausting. He's in a ARP at a mainstream school. NHS speech therapy is yearly (!). We pay privately for fortnightly. We have 0 family support or childcare other than school which is 5 hours a day.
I've made friends with a few of the school parents which is nice.
When I go to support groups it seems my son is still the odd one out despite being a neuro divergent group being advertised. They are all friendly but their kids can play together and want to listen to loud music and stuff, so my son just gets overwhelmed and we end up sitting in the garden on our own with me guarding the bird bath to stop him climbing in it.
I really hope you get some support soon.

@Komododragonchocolatecoin if DS requires more SALT, more should be included in F of his EHCP. You can request an early review of the EHCP in order to pursue this. Same with OT.

Have you had a home OT assessment? That can help to make the house safer for DS and better meet DS’s needs.

@perpetualplatespinning I need to read it again I think. I questioned the NHS SALT why it was yearly. They told me to check his EHCP & contact the local authority so I need to do that.

Don't think there is anything about OT in his EHCP. But I think he really needs it. Our house could be better set up. He caused £100s worth of damage to dh workspace the other day because dh was chopping a brownie with my eldest son in the kitchen. I was in the shower. He was out the room for 30 seconds.....can't blame ds but these incidents getting worse the older and stronger he gets!