How to parent

[mamatoaperfectboy]

DS (5) has a whole host of medical conditions and with GDD.
He is in specialist education which he is thriving in.
We really struggle with how to parent primarily at home where he can be his true authentic self.
I love him, I love every bit of him but we do struggle a lot.
It was suggested in a portage session when he was 2 that he maybe demand avoidant, so I've tried to keep the house hold as low demand as possible.

I recently went down the route of a a private autism assement he didn't receive diagnosis but the specialist said an ADHD diagnosis should be considered she feels ADHD is masking a lot of traits that we see at home but others primarily wouldn't. She suggested that and a OT referral.

I have rang GP for him to be put on the pathway for ADHD and they're saying we have to wait for the report to come back through from the private company. Which is fine.

My pet peeve is people telling me how wonderful he is I absolutely know he's perfect and has improved massively from 2 years ago. But everyday is a battle.
From the minute he wakes up I have to watch him like a Hawke or the house is ransacked, he doesn't sleep (he has melatonin) but when he's up for the day he's up and he's non stop.
He won't get himself dressed I still have to dress him, wont use the bathroom on his own, wont put his shoes on, wont carry his bag to the door wont hold anything unless he wants too.

When were out in public he primarily still uses a pushchair because he cannot walk sensibly with me will try to elope etc. (with other people he's like an angel in disguise)

I just need help and I don't know where to go for it.

Can’t or won’t. It is far more likely to be the former.

In some areas, you can self refer to OT, so you wouldn’t need to wait for the report. Be aware, not all ICBs commission sensory OT on the NHS. Are you in England? If so, I presume DS has an EHCP? That can include OT, including sensory OT, even if DS wouldn’t receive it on the NHS. You also need a home OT assessment to look at making the house safer for DS and better meet his needs.

For the sensory issues, do you have any sensory toys/equipment at home? Some people find the book the Out of Sync Child and this booklet helpful.

For walking outdoors, if DS is using the buggy just because he elopes, have you tried reins?

Has DS tried other medication to aid sleep? If you are worried about what he is up to in the time between him waking up and you knowing that he is up, have you considered a specialist bed?

Sometimes the difference between the presentation with parents and the presentation with others is down to the coke bottle effect. Dysregulation with you could be due to unmet needs when DS is with others. With that in mind, what support is DS receiving?

He probably appears ‘to be better’ or to look more NT because is masking.

I the challenge of how to parent is the one of biggest parents of children with disabilities face.

While you’re waiting for the OT assessment look up and try out some heavy work. Generally activties he enjoys are the ones that help him.