Severe adhd/ year 1

[mrslookingforrightschool]

My son has recently been diagnosed by the NHS with severe ADHD and social communication difficulties. Reception was honestly a nightmare, and I’m really worried about how he will cope with Year 1.
He has an EHCP and a high level of funding, but his ADHD is extremely severe. He can’t sit still for more than two minutes, even to watch TV, so I’m really worried about how he will manage in a classroom and whether he will actually be able to learn.
Unfortunately, we’ve been told he can’t start ADHD medication until he is 6, which is still about 9 months away. I’m finding this really difficult because I feel like he needs help now.
ADHD runs in the family, but his presentation is on another level. He is constantly moving, eats constantly, argues about almost everything and struggles enormously with self-regulation and following instructions.
Has anyone else had a child with severe ADHD starting Year 1? How did they cope, particularly before medication? I’d really appreciate hearing some positive experiences because I’m honestly very worried about him at the moment. He was in “special room” half day in reception until 5. School says since he is 5 years old, it’s not possible anymore. He stopped hitting this summer but I am also worried at school he will lash out again.

It sounds like you are right to have concerns about Y1.
If school staff are saying that the special room is no longer available, what other strategies and provision are they putting in place? If there are no plans in place, they are setting him up to fail sadly.

Did he have any transition visits to Y1 or were there any multidisciplinary meetings to share strategies?
I’d meet with the SENCO very early in the term to discuss how they propose for him to access the curriculum. Ask about booking in an early review of his EHCP.

Are there any suitable provisions in your LA? Any inclusive schools or schools with specialist units?
Do some research if you haven’t already so that you have a plan b provision to request.

Does he have a one page profile where strategies can be shared, especially your input with anything that worked in YR, any special interests etc.

There are child friendly ones here

https://sheffkids.co.uk/resources/

Any chance he could repeat reception as he is young in the year?

In our experience the school continually suspended DS, culminating in a referral to an SRB unit where he attended for 3 terms (with no suspensions). Once back at his usual school they offered a reduced time table. Then once he started on the medication he was able to attend full time, he was able to concentrate and actively participate. He finished primary school in the top end of every subject. It was an incredibly difficult few years, and I was so angry that the school effectively gave up on him. God knows how I managed to keep my job as I was constantly being called to the school. But the medication changed everything, and he doing so well now I could burst! Just hold on, it gets better I promise

Thank you so much, this really gives me hope. Yes, I’m at the point now where I can see that things may get tougher before they get better. I’ve asked the LA for a specialist school, but they are resisting at the moment. If his mainstream school suspend him, I hope that will provide further evidence that he needs a specialist school or unit that can properly meet his needs. I’m just trying to keep going and do what’s best for him. Thank you again for sharing your experience I really needed to hear this.

If your preference is SS but the LA refused, did you appeal? If not, do you still have the right of appeal?

What support is in F?

It is completely understandable to feel worried after such a challenging Reception experience. With the right support, patience and understanding, many children with severe ADHD go on to thrive and achieve wonderful things.

Thank you 😔 The school is known to have good support for SEND children, and I am kind of glad we’ll have a fresh start with a new teacher and TA. The SENCO is very supportive , but at the end of the day, so much depends on the teacher and how well they understand and support the child.

Reception was a right off for my DS also. Not diagnosed at the time, waiting for EHCP.
i was petrified for year 1, it’s a massive jump.
his teacher, thankfully was an angel and she just totally understood him, put more things in place for him and he managed pretty well I would say.

I know you have a little while to wait for meds, but they’ve been a game changer for my son. Not only in school life but home life aswell.

I would highly recommend this.
OP found ourselves in a very similar situation to you. Thankfully medication did help hugely (hadcto explore a few options until we landed on the one that worked). Here’s what helped in Year 1:

-Dedicated 1:1 support to support learning & help moving around the school day, asssemblies/PE etc. (From butter experience you will need to ensure that this adult is not “shared” with other children as schools have a sneaky habit of exploiting EHCP funded support for others awaiting a plan).
-A visual timetable per day so DC knew what to expect.
-A “Now & Next” board.
-Firm boundaries -any chinks or doubts in what could be pushed was difficult.
-A designated workstation in the mainstream classroom. Uncluttered focus board for visual timetable, their own pens etc, really helped reduce in class distractions.
-A routine daily sensory diet. This helped with the relentless energy levels & social interactions/skills being built.
-A home/school communication book so we could mirror & support learning at home.
-A wobble cushion helped with focus & attention spans being extended.
-Bizarrely writing with a purple pen helped with handwriting and focus (we think was possibly Peppa Pig related?)
-Routine short catch-up meetings to iron out any difficulties or get updates. This helped hugely.
-“Prompt/Praise/Reward” approaches per task.

The holding DC back a year was hands down the best thing we ever did for our DC. It bought us time to establish comfortable school routines versus the diagnosed needs, get the support in place and find workable strategies for at home & school.
It’s not easy waiting for medication, the things we found hardest to manage were the sleep deprivation, navigating the system/school and finding ways to counter the never-ending energy levels. Swimming sessions were a massive help with this.
Also-we made Saturdays a non negotiable “family down day”, so no screens, no parties and where possible no “peopley” events which we still do today (now at secondary age) as DC gets so overwhelmed & burntout from the grind of Monday to Friday.
Definitely speak to the school & hang in there, it will get easier.
Best of luck x

Reception was essentially a write off for us. The teacher is apparently very well regarded but she took the easy option - her words were that he chose to stay on the periphery of the room but he was effectively abandoned. Now year one and a different teacher and we are having a completely different school experience even though he isn’t medicated yet.

Thank you, this is really helpful. I will write a “What Works at Home” note to give to the teachers on his first day. We’re also going to have a meeting in the first week with the SENCO and his teacher, so I think that will be really useful.
And yes, absolutely, he will push any boundary where he sees even the smallest gap or possibility and won’t be afraid of conflict. He nedds calm, nurturing but firm adults around him. His impulsivity was misunderstood as chosen/learned behaviour which is really sad. He got adhd diagnosis despite teachers saying they believe he doesnt have adhd. (Bad parenting) consultant, phycologist and st said they have no doubt. His EHCP was unfortunately written before his diagnosis and, although the level of funding is good, the wording and provision are very poorly written. I think I made the mistake of assuming that because the funding was good, I didn’t need to do much and let the school use it as they want. For the next review, I’m definitely going to make sure I provide lots of evidence and put my own detailed input in, rather than leaving it to someone who doesn’t really know my child to write vague things. The educational psychologist definitely missed so many important points and, honestly, did a very minimal job. Speech therapy assessment was great though.
Thank you so much, I feel more positive already

You can request an early review. On their website, IPSEA has a model letter you can use.

If after the next review, the provision still doesn’t cover what DS requires, you will have the right of appeal. Similarly, if you want a different placement but the LA doesn’t name it, you will be able to appeal.

You mention EP and SALT assessments, but did DS have any other assessments during the EHCNA e.g. OT?

No, he didn’t see an OT. I talk to other send parents and they all say they haven’t had an OT support/ assessment. I don’t mind paying to a private OT. Do you think that would help?

An OT assessment could have been part of the EHCNA.

An OT assessment and ongoing input will help.

You could look at an independent assessment. If you do that make sure you use someone who can look at the sensory side of things. Not all OTs have the necessary qualifications, training and experience to properly cover the sensory integration side of OT. While all evidence can be used to inform the EHCP, I would also make sure you use someone who can write a properly detailed, specified and quantified Tribunal standard report.

You could raise the need for an assessment as part of the AR process.

To give you all options, you could request a reassessment of needs, but personally I wouldn’t go down that route. That is because even if the LA agree to a reassessment of needs it a) doesn’t mean the assessment will be good, and b) doesn’t mean the LA will make the necessary amendments to the EHCP, so you may still end up appealing the content afterwards and the waits for appeal hearings are very long.

If he’s struggling so much will the school agree they can’t meet his needs? Start looking at more specialist provision who can support him better and ask for a review of EHCP? It sounds as though he’s going to struggle in a mainstream setting even with medication.

A private OT assessment would be really helpful I think! Worth paying for a good one that the LA will accept and one that can go to tribunal with you if necessary. It would be money well spent as it sounds like his ehcp is very weak currently.

You are very welcome! Having read your update I have a few links that may be heplful to you. Am just running out the door, but will return to this thread later ad share some more thoughts and links x