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desperately needing help

rnuggy21

Hey All,

Ill try and keep this short, LO is 9 going on 10, under consultation for ADHD and inline for an ADOS assessment, I have a gut feeling that he has PDA.

He is currently in year 5 and is starting to talk about going to high school, where he said he will have no friends, as he's going to a different high school than the rest. His behaviour has escalated, in the sense of harming himself, and not being nice to his school friends, his attitude sucks as well here at home. why don't you do it, when asked a simple task. 

His bedroom routine, is usually me singing a song 3 time, but this has escalated to 12, and then half an hour later can you sing it a further six times clearly hes worrying or something is up with him,, but can't identify what it is. I've told him on several occasions, that this is the last one, however he will come down crying saying he can't sleep, and he can't he won't sleep till 10pm, if not longer if it isn't sung.

I spoke to CHAMS and they suggested Thrive, been there and they said because of possible diagnosis, they can't help due to neurodivergent. 

How do People parent this, I feel completely lost and crap mummy!!!

Parents

  • You are not doing a bad job. You sound like you are figuring out ways to support your child. The bedtime routine you describe sounds very tough but your hanging in there, I call that being a super supportive parent. I would say try to adapt what works in a way that takes some of the load off yourself but still comforts him. Could therapy be an option? My son is the same age and has his challenges, I am self realised autistic with my assessment coming up shortly. It is a tough job being a parent anyway and you seem to be finding ways of helping your child. I would say write down what helps and keep notes. It’s one of the best things I did for my son, I have something to look back on and can then identify patterns. Therapy has also helped.

    Be good to yourself, you are doing a great job 

  • in reply to Take5

    I just thought I would add a little more. Does your son have an EHCP? We are just in the process of battling for this. The school refused to apply as he was academically in line with expected level. We thought we stood be chance after hearing that and thought it was all about the education. We were wrong this is a tiny part of being accepted for an EHCP. We went to a local roadshow and spoke to someone who advocates for young people with EHCP needs. There is a cost (not sure what this is yet but we paid an initial £40 for the application). The person who is helping is legally in the know and in some cases this goes to tribunal which sounds daunting but I’m told is a straight forward process. Our son masks all day at school so as to not stand out and he does a good job of that, this is why even with a diagnosis the school other than some basic adjustments don’t see this as a big deal. What they don’t see and as you have mentioned is how this all spills over when he is back in his safe space. I had heard two years ago how you have to fight for everything and we are experiencing this now. You will learn how to manage things in a positive way together, just learn as much as you can and speak to others in a similar situation. Either sleep we give our son natural gummies that help produce melatonin, they are completely safe but just helps him settle. 

  • in reply to Take5

    Hey thanks for this, I am in the process of applying for an ehcp, whilst we are still awaiting the diagnosis which is taking forever afhd has been 3-4 year wait, autism will be another 2 years, I have decided to just to treat him with these conditions regardless. I also think he has PDA or ODD as he can be extremely defiant. My worry is when he goes to high-school and they don't put things in place this could get worse hence the ehcp plan.

    The primary school weren't supportive but when I told them thay I am doing it, they have turned a corner. 

    I had taken my son to thrive last week to see if they can help and they said due to neurodiversity they can't. I looked on the nhs app and seen they sent the doctor a letter saying that my son will not engage in the therapies so has been discharged. This was even without trying, and totally different to what the lady told me face to face 

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  • in reply to Take5

    Hey thanks for this, I am in the process of applying for an ehcp, whilst we are still awaiting the diagnosis which is taking forever afhd has been 3-4 year wait, autism will be another 2 years, I have decided to just to treat him with these conditions regardless. I also think he has PDA or ODD as he can be extremely defiant. My worry is when he goes to high-school and they don't put things in place this could get worse hence the ehcp plan.

    The primary school weren't supportive but when I told them thay I am doing it, they have turned a corner. 

    I had taken my son to thrive last week to see if they can help and they said due to neurodiversity they can't. I looked on the nhs app and seen they sent the doctor a letter saying that my son will not engage in the therapies so has been discharged. This was even without trying, and totally different to what the lady told me face to face 

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