Feel like I'm struggling to cope

[tellmeaboutit546]

Hi all,

Firstly, apologies if this is on the wrong thread. Mumsnet is a learning curve for me.

DS is 4 years old and I'm really struggling to cope with his behaviours. For context, a year ago, 1 key worker at nursery originally flagged concerns over DS's behaviour which prompted an assessment with the HV. We were told because he isn't delayed in development then we wouldn't qualify for a referral for a further assessment.
Since then, his behaviour has got considerably worse to the point I called HV support line and the HV reviewed the assessment and told us he did too well for it to have not been a red flag and in her opinion she would have done a referral a year ago. HV advised she would recommend our district doing a referral to CAHMS for anger management. In the interim, we've done endless amount of parent courses, been in close contact with the parent support worker and in sheer desperation I've also contacted CAHMS support line. Our district HV contacted us and mentioned nothing about a referral to CAHMS and mentioned about home visits which is fine. My issue is all I keep hearing from others is I need support yet nobody wants to give us the support. I feel like I'm stuck in a maze and don't know which turning to take.

Can anyone help with support as I cannot tell you how many times I have stressed how much I/DS need support but it feels impossible to get.

Couple of things we've noticed from DS.

• has no danger awareness, or any awareness at all. This probably isn't helped by his incredibly high pain threshold.
• intense outbursts. Yesterday, he wanted to walk out of the shop whilst I was paying, and me preventing him from doing that resulted in me being bitten, kicked, punched several times in the face, hair pulling and so on with an audience of 10+ people.
• DS is very literal. If you ask him to have a wee on the toilet, he will quite literally wee on the toilet.
• runs off all the time, doesn't care whether you can see him or not and combined with the lack of danger awareness, it's incredibly stressful.
• loud noises are an issue - since starting reception (couple of weeks ago) this has got worse to the point he struggles with traffic noise.
• doesn't ever sit down. Even watching tv, he's always kicking his legs or hanging upside down.
• doesn't like to be touched unless it's on his terms. Touching him often makes him irritated and can lead into an outburst.

If the HV won’t refer, speak to the GP. Before the appointment you could look at the Ages and Stages Questionnaires.

You might find The Explosive Child and the Out of Sync Child books helpful. Also this booklet. Some people find PDA strategies work and like Yvonne Newbold’s resources.

Have you spoken to the school? What support are they providing?

Will DS use ear defenders/noise cancelling headphones? If noise is a problem at drop off and pick up, ask the school if you can drop DS off/pick him up slightly early or late via a quieter entrance. If lunchtime is too busy for DS, request he can eat somewhere quieter.

For DS’s sensory needs, has DS had an OT assessment?

If DS puts himself in danger by running off when you are walking places, have you thought about reins or a buggy?

Thanks @EndlessLight

We have HV doing the home visit on Monday so if no joy then I'll go to the GP
I'll definitely try those books and strategies - thank you so much, honestly this is all I've been asking for is some guidance.

I've spoken to school, the pastoral team recommended a SENDCO form and we are waiting to hear back. They have done brilliantly with transitioning him into the classroom each morning once he's ready and he takes ear defenders into school if he's struggling to cope. Problem is, they seem to see a side of DS that we rarely ever see. They say he's behaved brilliantly but once home, it all erupts.

I have no idea what an OT assessment is so I'm guessing no. I'll check that out now.

I've thought about reins but never thought he'd take to them as he hates being restricted or touched unless on his terms - it's outbursts impending which is quite literally like blind rage and sometimes I don't think he recalls what he's done to us. We have used the buggy and can do this, however because he has soooo much energy, like 7am - 12am non stop energy, I'm probably naive in thinking that getting him out walking will somewhat tire him out?! However, maybe buggy is the answer as rather him be safe with lots of energy.

Appearing to cope at school but exploding at home isn’t uncommon. It is called the coke bottle effect. It signifies unmet needs at school. It doesn’t mean all the problems are at home.

OT is occupational therapy. It can help with things like sensory differences and emotional regulation. Sensory OT isn’t commissioned on the NHS everywhere. Even if your area doesn’t fund sensory OT, it is still worth an OT referral for other aspects they can support with.

If you go on to request an EHCNA and the LA agree to assess an assessment, even if sensory OT isn’t funded in your area, an assessment can be part of the needs assessment.

When you speak to the SENCO, ask if they have anyone who can support Zones of Regulation work.