My son is struggling :-(

[SpideyMom]

It's breaking my heart.

He is 5 with suspected autism. He is becoming very emotional and anxious at things touching him. As fine as he appears he is obsessively washing his hands. Every few minutes! though I am trying my hardest to stop this but its causing him alot of upset. Anything he touches he then goes to wash his hands. Anything that touches him he goes into a meltdown saying he hates it. He has also started over tightening the taps to the point in need to get them replaced.

I'm not long out the shower and my foot touched him slightly. This sparked a massive crying fit how he doesnt like me for making him dirty. The other night his foot touched a cushion and he touched it. He was fast to go to wash his hands and I asked him to not. He was so upset that he had to as his foot has touched the cushion.

I am trying my best to reassure him but nothing is working. I want to blame myself but at no point have I told him to wash his hands like this. Ive never had to tell him really. He just knows when to but this is extreme.

He has also started to blink repeatedly for alot of the day and is communicating to people by hissing and when I correct him he says he is a cat. He is not a rude boy but the hissing when spoken to comes across rude and he has never done this in response to people before.

He seems to be struggling more by the day.

@LizzieAnt that's made me cry a little. Our boys sound so similar.

Your DS has gone through so many challenges so far hasn't he. This is what makes me so sad. This is their normal isnt it. They dont know an easier way.
I have been awaiting a call from the schools inclusion manager for the last two days. They are so resistant to helping him as he has no diagnosis so he is just being ring fenced into the 'weak, must try harder, easily distracted category'. It makes me angry really as I have been addressing this since he started Reception. In Reception they didn't really care. Its learning through play isnt it, and he was making friends really easily. His ability to role play and create was always highlighted. He once won the VIP award because his teacher had never known a child so young to have such a creative mind and ability to build something from nothing and encourage and guide their peers into developing their ideas too. I was so proud as this is how he has been ever since he was able to start building with bricks as baby. He cant create out of absolutely anything.
She would also always tell me to try and not worry because for tasks where children of his age are more likely to struggle he had no issues at all. The one day she put a problem solving task on each table and told the children to try and find the answer. She said every child around the table messed around, but my DS sat there, focused and solved it perfectly in minutes. So I do believe my son has a brilliant mind, but learning the curriculum is breaking my heart.
I cant imagine how teachers would have patience with the way he is, which then makes me worry massively about how they see him. He needs helps, not judgement.

My son is very avoident too. So I imagine assessing him will be near impossible. We were recently in hospital due to an unexplained limp. He was asked to do things with his leg. He straight refused. The Dr then had to manipulate his leg. He burst out laughing saying he wanted the doctor to stop touching him. I remember watching him willing him to react as I worried it made me look like he was sent to the hospital because I was making his symptoms up. When he screamed it was horrible but they finally saw there was a problem. If they went be his reaction up to that point they would have discharged him without detecting his infection. He also wont answer any questions he is asked. He has always been like this. So if he is ever asked anything by anyone he will hunch his shoulders and put his head down and when I ask him to answer he will say he is shy. Or if he does answer it will be animated, high pitched and silly.

I absolutely adore him. He is my heartbeat but I do worry about how others will see him and think of him. The world can be horrible, kids can be horrible. My god parents can be horrible. I am sick of being told 'my child is this and that and his teacher is so amazed at his development and how far he has come'. It makes me feel shit about our situation as its isnt because we arent bloody trying. My own parents are very hit and miss too. One minute my mom believes he has autistic traits and then the next she will say you're going to have trouble with him when his older etc.

Lots deep breathes today. We are learning through visuals today.

Thank you for your advice xx

So my son has developed an awful facial tic too. I've noticed his blinking alot and tapping his nose and cheek pretty much since lockdown began. But these last 2 weeks he has started distorting his face to the point he looks in pain. He cannot tell me why he is doing it and says he is in no pain. I have just been watching him playing and the faces he is pulling has made me have to walk away. I am in the next room crying how fast things are progressing with him. I shouldnt care what others think but if friends saw him do this at school he could be made fun of. It's a horrible way to look at it but kids can be so nasty

Things got so bad yesterday that I called the doctors crying. The receptionist must have thought I was mad. A new doctor called me back and I have to say she was amazing. Is resending all his referrals marking them as urgent. She is writing to the school and involving an educational psychologist and the school needs to apply for a care plan. She is involving CAMHS. She said she wants to cover all bases now so we can made sure he is getting the help he needs.
I do believe things have been magnified in lockdown but it has made me realise I do need support for him

Ah, that's great your doctor is being so helpful. Don't worry a bit about calling them in tears (I've done the same), I think it helps them realise the seriousness of the situation and that you and your son need support now. I hope everything goes well for you both. Please PM me at any time too if it helps at all.

That's fantastic.

School may not agree to commission the educational psychologist assessment if they don't feel they have seen enough evidence of his difficulties.

You need to be clear about the difference between an Individual Healthcare Plan (IHP or IHCP) and an Education, Health and Care Plan (EHCP or EHC Plan).

The school can write and follow and IHP in cooperation with health professionals and parents. They don't need to apply for it and they usually have to fund the support detailed in it from existing school budgets.

The school (or you) can apply for and EHC needs assessment, which is a multidiciplinary assessment of need by a variety of professionals which leads to an EHC Plan. The plan is only issued if the needs identified in the assessments are more than the school could be expected to fund from their existing budgets.

The criteria for and EHC needs assessment is only that the child may have SEN that may need to be met via and EHC Plan and your son probably meets those criteria. However, most applications for an assessment are turned down unlawfully.

You might benefit from finding an online support group for parents of children with ASD as lots will have been where you are and will be happy to help you navigate the system.

Thank you. I wasnt told it may be rejected. The way the doctor worded it to me was that the school had to do it, but now I feel like it may resisted.
I guess I will cross that bridge when I come to it.

I also had no clue that there were different plans

Have you looked at the OCD -UK website for info on children. They have a book called jolly and grump for younger children that maybe good to read with your DS. I’ve used in the past (albeit a while ago) I think they will send you a copy if you request it. And some info for you.

I’ve tried to find you a copy to send, but no joy, but if you google ocd uk jolly grump, brings up pdf from cbt centre with details somewhere in there.

I hope things improve for you both soon - it’s difficult to access help at the best of time, it’s even harder in pandemic.

Thank you. I will have a look for that.

School have called and they have been fantastic. They have told me the process they have to go through but he is now on their monitor list. If over time they cannot help him they will then move him onto their SEN list and apply for a plan from there.
She was so informative and gave me loads of advice. But also made me feel like I'm not to blame. When your child struggles you cant help but blame yourself for not being able to help them properly.
The doctors have also called asking which hospital do I want my DS to be be assessed at so it seems they are referring him straight away. I know there is a long road ahead, but it's a relief knowing that something is being done

That's really good news. I'm so glad things are moving along for you.

They have told me the process they have to go through but he is now on their monitor list. If over time they cannot help him they will then move him onto their SEN list and apply for a plan from there.

That sounds great but be aware that there is no need to go through that process. If, at any time, it feels to you like his needs should be properly assessed or cannot be met from the school's resources, push for an EHC needs assessment. It is horribly common for schools to pretend that they're doing everything they can, while preventing the child from getting the support they need and would receive following an EHC needs assessment. They usually smile sweetly at parents whilst doing so.

As you say, that's a matter for later on. Just be aware that it's not unusual for schools to give parents very poor advice about these processes. It's definitely worth checking with other parents in similar situations if you can.