EHCP - Boy with autism 4

johnny1977

Hello everyone. I'm wanting some advise. We've a boy who is 4 and as been diagnosed with autism shortly after his 3rd birthday. 

He was born in December 2017. We started noticing speech delay, other behaviours and contacted the speech language therapist who advised us to goto a pediatrician. 

He saw the paediatrician when he was 2 and she said she thought autism wanted to wait until nursery and how he progressed. 

He started at a mainstream local primary nursery in Jan 2021 for one hour a day and as soon as the nursery teacher saw him she asked us to go back to the paediatrician and get the autism diagnosis in writing so the nursery could access one to one funding for him and he was showing classic symptoms of autism and ADHD. Echolalia, stimming, sensory issues etc

We went back to the paediatrician and got the autism diagnosis in writing. 

Our boy continued in the nursery until the summer of 2021 and seem to make progress his speech developing. His nursery teacher left.

He went back to the nursery in sept 2021 and started doing 30 hours a week. We met with the senco and the wheels were put in motion about getting a ehcp plan because everyone felt this was in our sons best interest. 

We were in process of moving a few miles away from the school and we told the senco this and maybe we change our son to the local nursery. The senco said she didn't recommend this and it would be in our sons best interest to stay in his current school until he gets his ehcp plan and move to his special school. 

At about the same time we were moving we got a phone call from our sons school saying he'd fell doing speedy phonics in the class and cut his head inside the class room on a table and we had to take him to a and e. To the date he's still got the scar between his eyes. 

We know accidents do happen to kids in school/nursery. But as protective parents were/and still are worried. 

To our amazement we saw a later video uploaded by the teacher in which she is recording jumping inside the classroom on a wettish floor when he'd only just had the accident the previous week(the scar is visible in the video). 

We had a meeting about this and the senco and teacher/headteacher just said "he's making progress. They're sorry and accidents do happen". We asked them why wasn't he having one to one like is health/risk assessment says and they said they have other kids to look after as well. The teacher was with him at the time and said she couldn't catch him in time. 

We did accept this. As they're professionals and they thought in our sons best interest he's stays there and we put the school down as our first choice(because his ehcp plan was not in place). 

He started full time school there in September 2021. We got the draft plan of the ehcp in October 2021. We told them we wanted our son to go the local autism special school. 

The local ehcp officer as consulted with his current school and they said they can currently meet his needs. And named on the plan. 

We as parents have tried to do the best by our son. But we 100% do not feel it's the right school for our son and they understand his needs 100%. He appears to be triggered at hometime everyday and we spend hour on "eggshells" with him. Today the Christmas play and the other kids doing the play whilst he is alone on a bench with the teacher trying to stop him falling off/getting off stage. We don't feel like we have any support from the school and haven't a clue what goes off there. Whilst he's waiting in the morning we've heard the older kids calling him a "wierdo" and he doesn't enter the school the normal "way" but through reception. 

We was given the chance to comment on a draft EHC plan in October but we didn't have a clue what to write. We thought was a formality for him going to the special school. But now it seems his current primary school(which is a academy) is named on the plan and they will just review yearly. Why would his local school want to lose funding? 

Does anyone have any experience on this? Maybe I'm wrong about this but my current feeling is the school want to keep him(for funding), the local council don't want to send him to special school because of the extra funding it will cost. 

Me and my partner although we like his current primary don't feel it's right. At current we don't feel his autism(social and mental health) is being catered for. I know autism is very complex. 

Help please. Concerned parents(sorry long winded and difficult to understand)

Tori_Scope

Hi @johnny1977 Thank you for taking the time to post about this! And there's no need to apologise. Sometimes it can just be really helpful to get it all off of your chest. I can see why you'd be feeling concerned and frustrated.

I'm not a parent myself, so this isn't something I've personally experienced. I hope that another parent or carer who has will see and respond to your post soon. I'll also tag one of our fantastic volunteers, @L_Volunteer, in here, as she may have some insight to offer.

Have you been in touch with your local SENDIASS, or IPSEA, at all? 

I'm also wondering whether you'd find it helpful to access one of our friendly family services?

L_Volunteer

Hello @johnny1977. Thanks for already finding the courage to reach out to us. I appreciate how much courage it can take to reach out, especially when you are finding things tough and are fairly new.

I can hear how and why this would be worrying for you as parents. Not least because there are signs that your son is not receiving the support he needs and deserves, as outlined in the health/risk assessment.

It sounds really positive that your son has, more recently, started full-time school and now got a draft EHCP. In the first instance, if you think there is a setting that is more suited to meeting your child’s needs, I would encourage you to talk to your local authority. You, as parents, have a right to request a different named school in the EHCP – though, I can’t, unfortunately, guarantee you the outcome of this request.

I would also encourage you to talk to your son’s school and both keep a diary. With this diary, I would encourage you to identify what triggers your son at home time every day as there seems to be a pattern in the timing here. By identifying the trigger, you can hopefully reduce the time your son is triggered and you are walking on “eggshells” with him.

It sounds really disappointing that your son still doesn’t seem to have the support he needs and deserves in place. In terms of support from the school, is your son’s EHCP being followed?

If the EHCP is not being followed, Scope has some information about how to proceed. Most generally, though, this is about:

• Talking to your son’s SENCO / headteacher in the first instance
• Talking to your local authority if the EHCP still isn’t being followed
• Taking it to a tribunal if the EHCP still isn’t being followed

I hope this, combined with @Tori_Scope’s response, at least semi-helps. Please don’t hesitate to let us know if there’s anything else we can do to support you though.

We are all here for you and listening to you. You don’t have to face this, or anything else, alone if you don’t want to.

Take care for now and we will look forward to, hopefully, hearing from you again soon