desperately needing help

That's good you have help from the SENCO. It is difficult as they often don't want to be seen to be different. 

I can say from my experience, although we have gone through difficulties, some things have improved over time. There are other things that just are as they are.

Hoping the time off school is beneficial to you both.

Thank you for this ill have a look. I also gave had a look at the links you have sent me too 

rnuggy21 said:

whilst we are still awaiting the diagnosis which is taking forever afhd has been 3-4 year wait, autism will be another 2 years

If you live in England, you might like to ask your GP about getting him re-referred using the Right to Choose pathway (RTC), which you are entitled to use instead if you wish.

In England (only), this enables access to certain, approved, private autism assessment providers who typically have much shorter waiting lists than the NHS, but with the referral and assessment still fully funded by the NHS. 

I was on an NHS waiting list for two years before I learned about RTC and switched to it (on the recommendation of an NHS psychiatrist). My assessment and diagnosis then followed just four months later.

Some examples of RTC providers are listed here, along with further explanation.

More information:

NAS - How to request an autism assessment

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 

Hey,

Thanks for this, sorry I haven't replied sooner. I do think I need to change my wording and how I phrase things with him. Usually if he says no I am pretty much respect it, and don't push unless I am really desperate. I usually give him a count down I.e. so in 5 minutes its time to brush your teeth etc, as I know that usually works.

Last night yes I still had to sing 15 times but I think its more to do with hin still trying to get out of his fight or flight way.

He is involved with senco and we have allsorts in place but he doesn't like using some of them, I think out of embarrassment but wr will continue to keep trying with him  

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. 

Hi. So for example dinner in 5 minutes or it would be good if you could bring your cup down next time you come down. As he often says he will do something by a set time I might say by 4 o'clock. A lot of things are also about forgetting I think. So sometimes I offer to help or ask when he would like help. I also give choices so would you like to go out at 2 or 230 for example. You mentioned the ADHD, I recently watched Inside the ADHD Mind on I player with Chris Packham. My son has never been able to explain what it feels like to have ADHD and I found that particularly the young man gave a good insight.

Another thing regarding bedtime, would it help if after a while you were in the room next door, so still nearby?

That sounds a good plan for the holiday and may help to see if school is the main factor. If so it may help, as someone else suggested to note what happens in a school day,when things are worse after school, if you can find out, it then might be helpful to discuss concerns with the school SENCO and also go back to CAMHS. We did this when we had concerns with his mental health after moving home and were able to get advice, although this was post ADHD diagnosis.

Thanks for this, can i ask how do you word things with your son? REcording will be a no go he flat out said no that he doesn't want a recording but wants me. I feel like he is riddled with anxiety and won't say what, last night he came down crying and I went up, and he kept repeating his stupid ADHD brain thought his projector was now an alligator, and was gonna eat us all up.

So I fixed the projector to not show an alligator, and he couldn't express to me why he is feeling this way. He has two weeks off school now, and I am just gonna let him be him, no demands no nothing and see if that can help him relax, and then we can maybe have a conversations on expectations etc. 

Last night he came down, and was upset, so I did go up, and I went through a few things with him for instance recording and he did not like that. I think he like the company, and the hugs that go with it, which make him feel better. 

He doesn't go to highschool to next year so in September we will start looking at this. 

Thanks for your support I think I just needed to let it out and know I am not alone 

Hi and welcome to the community.

I'm sorry to hear of your struggles. You might find some of the advice and suggested strategies here helpful:

NAS - Demand avoidance

NAS - Distressed behaviour

NAS - Sleep - a guide for parents of autistic children

In addition to the support that you receive here, you might also like to consider seeking emotional support via a more personal phone conversation with other another parent who is, or who has been, in a similar situation via the NAS's parent-to-parent helpline. You can request a call here:

NAS - Parent to Parent Emotional Support Helpline

You sound like a very caring parent. My son often doesn't know why he is worried and as a parent that can be so difficult. 

I can share my experience. Getting to the final year can be challenging and lots of students have more challenging behavior as they get towards the 'top' of the school. There could also be many challenges talked about like SATS and people talking about whether they will pass, which I feel goes against the original reason they were started. Then as you said moving schools is a big challenge. I wondered if your son comes under the SEND team, as the school SENCO may be able to help or you may be able to contact the SENCO of the school he hopes to go to and ask for extra visits to help with the transition. It is a big change and my son also went to a different school from friends. In his case making new friends helped, following difficulties at his previous school.

I note you also mentioned attitude when asked to do a task. My son sees that as a demand which is a challenge, so I now try to ask in slightly different ways that are less direct, for example mentioning, giving a wider deadline and sometimes helping with the task. Asking in advance is another thing that can work, but this is something to work out over time to reduce the feeling of demand, especially if it is something that needs doing now. Personally as someone on the list for assessment, I can say immediate demands cause difficulties. Over time he has started to do more, so I then can celebrate the positives with him.

In respect of sleeping, this is also a difficult thing and not being able to fall asleep can cause panic. This time of the year is difficult due to so much light. The solutions we found with this was blackout curtains and now he is older he also has an eye mask. Another problem was switching off thoughts. The solution we found here was having a fan on in his bedroom as the sound helped him to fall asleep. In your situation I wonder if it is possible to leave recorded music on.

In respect of support I wonder if the school would be able to give you information of any local support groups either run by local services or parents in similar situations. I made use of these when my son was younger and found it helped to know I wasn't alone, as well as getting ideas from others.

Also if you suspect PDA I guess you have googled it as there is a website and books that have been written.

Like you, I have been through difficult times and it is not easy. I can see you have asked for help from professionals but not got far with that support. Often it appears that we are not doing well as it is so overwhelming. However your support is very important to him. You may be the one place where he feels safe. The extra things that you are doing are giving him that comfort he needs.

It isn't easy, but everything you do to support is helping him, but support for you is important too, so I hope you can find local support with people who also understand and may be able to recommend any local help.

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 

I don't know, but here are some random comments:

Could you record your singing? Then he could be in control of it and listen as many times as he wants.

Is it the singing or your physical presence he really wants hough?

For the new school, is there a way to visit, so that it does not seem so scary. Take away some of the unknown. If there is a way to make it a positive experience it would help, maybe he would then look forward to it.

Don't feel crap. You can only do what you can do. You are doing your best. Singing something 18 times a night is not crap.

its either PDA or ODD