ADHD sleep and DLA

[Mitchywoo]

Hi all

I wondered whether anyone had gone through similar and can offer any insight…

I have just started the process of an ADHD assessment on ds who is 4, through our GP

He is a very sweet natured, kind and lovely child but chaotic, nothing he does is particularly naughty just stuff he has no control over. Even the GP agreed he would benefit from doing the assessment. His school are aware of my concerns but said he’s very good at school.

The main issue is he has never slept through the night (wakes for 5+ hours) and is on melatonin which only helps a tiny bit but he needs constant supervision - I dosed off one night and he tried opening a second floor window (it’s now locked)

He has had sleep studies but no reasoning for the bad sleep. He was sleep trained as a baby and goes to sleep by himself but wakes after a few hours. And doesn’t seem to bother him too much the next day. Our GP said it could be related to possible ADHD.

I was told by another parent who works with sen kids that you don’t need a diagnosis to claim DLA as some assessments can take years.

Has anyone had similar and been successful with the DLA?

He deffo needs more care then the average child especially at night and whilst he’s at school(just started reception) I try to get abit of sleep but I also have an 8year old who i need to be present for so sleep is very last on my list.

Yes myself- I was awarded higher rate care for my daughter this year she’s only just turned 4. Dla is based on needs not diagnosis the forms are very long winded and can be draining to fill out but I did send in evidence such as letters from my health visitor and the IDP I had from my daughters nursery. She’s suspected to be autistic along with adhd no diagnosis yet currently over a year in on the waiting list.

Lots of people get dla without formal diagnosis but your child receives melatonin and has attended and has had sleep studies etc so has known and documented difficulties with his sleep. You can apply for DLA and if you meet the threshold (which it sounds like you might) they will award you dla to help with the additional expense you incur managing his condition.

It sounds like you will need to spend a fair bit of money making the house safe for you all to sleep in. Swimming really helped regulate ds’s sleep especially if you can go regularly. Some vitamins make ds totally sleepless.

Definitely apply. Cerebra has a guide to help you complete the form.

High rate care is for those who need help or supervision throughout both day and night in excess of what is typically expected for children the same age, which I presume applies to you, (or for those applying under the special rules which doesn’t apply to you). Mid rate care is for those who need frequent help or constant supervision during the day or supervision at night (or help while on dialysis which doesn’t apply to you).

Have you requested an OT assessment to look at how to make the house safer and better meet DS’s needs? That could include a specialist bed DS can’t get out of so if he wakes up whilst you are asleep he is safe.

Has other medication been tried if melatonin hasn’t helped enough?

Thank you for your reply. I haven’t got a huge amount of evidence but do have a report from the sleep study consultant who suggested medication. And I have old records of times when I tracked his sleep which I shared with the GP.

Thankyou for your reply.
I think I spend more money trying to keep him occupied during the day as he is just full of energy.

We don’t go swimming as there isn’t a pool close to us but we go soft play a lot, forest walks, we have a dog so do an after dinner walk everyday. So lots of time outside and trying to burn energy

Thankyou for your response.

yeah I will apply. I was looking through the form for my eldest as he’s suspected to have autism but as I was reading it through I found a lot that correlated to my younger son.

No I haven’t. Generally the house is safe but it was just the once where tiredness got the better of me and I wasn’t watching.

He use to climb out of his cot alot and was in a toddler bed from about 10months and now is in a proper bed. But it’s never been suggested to look into specialist beds.

My GP has recently upped his dosage on the melatonin but I have requested to be referred back to the paediatrician. And the school have done a referral for parenting classes.

The house should be safe without you having to be alert 24/7. The point of DLA is to access the extra you need to support their access to life, so window locks, taxis to swimming, help towards costs as you can’t work for caring, enrichment activities or toys. You must be exhausted from lack of sleep. I’d really encourage you to explore things he can do with less input from you. So he gets tired while you get to sit and sip coffee. It can make life much easier just to have a little space.

You will have more evidence than you realise. For example, GP records, the ADHD referral, school information.

There are other medication that can be tried. Although the GP may not initiate treatment with them. Many prefer paeds/CAMHS to start them.

Request a home OT assessment. Sometimes specialist equipment won’t be suggested unless parents pursue it. It isn’t just a bed they can look at. It can be things likes ensuring the windows and doors are secure - not just locks but things like alarms and even perspex screens over windows if needed. And things like ensuring the bathroom, kitchen and garden is safe. And if you have a drive ensuring that is as safe as it can be for transfer from house to car and vice versa.

Also, have a look at social care assessments. A carer’s assessment for you and an assessment of DS’s needs. On their website, Contact has model letters you can use.

Thanks for your reply.
Yes you’re right, I’ve already been looking into extra window locks and such. And luckily have quite a handy brother who has installed extra locks throughout the house this week.

Luckily like I said in my post he is generally a sweet kid. Just hasn’t got much control over his intrusive thoughts but I am able to sit and let him play independently without much adult intervention for short periods of time. I liken it to a hyper puppy almost.

Thanks for replying!

Will I have to obtain the GP records or will they do that as part of their investigation?

his GP has upped his dose on melatonin but said she will refer back to the paediatrician - luckily she is very understanding and can see I’m struggling with the lack of sleep.

I didn’t know I could do all this so Thankyou for the into!

Don’t rely on DWP requesting information. Make a SAR and send DWP the information yourself.

Does DS have an EHCP?

After each consultant appointment they should send you (and the GP) a summary of what was said/happened. So you enclose those as “evidence”. I number them and reference them on the form, and highlight the relevant bit. (Eg Ds doesn’t sleep well he attended sleep clinic on xx/xx/xx see letter 1, and was prescribed zzzzzzz see letter 5). Make it easy for them to see but there’s no need to be particularly formal.

As well as clinic letters, a SAR to the GP will give you other evidence. For example, it will have the GP notes from GP appointments and it will include a copy of the referral information for the ADHD assessment and back to the paed too.

Does CAMHs or your local authority have welfare benefits advisors? I know our local adult mental health trust employs benefits advisors. They know the right wording to use in the forms, such as “consistently…”

No he doesn’t. He’s just started reception and hasn’t shown any signs at school. And I’m only just starting this whole process

I’m not sure to be honest. Very new to all of this. So will have a look

Consider making an EHCNA request.

DS has just filled in the referral form for an ADHD assessment for DGD (and as the doctor in the family said “If she doesn’t have ADHD, nobody in the world has it!”). He had to ask the school to fill in a section. The school has given her a fidget toy, movement breaks and put her in a support group for maths (which she is way behind in) straightaway. (There is the question why didn’t they do this before, but better late than never!)

Have you discussed anything with DC’s teacher, that could help DC in class, before the ECHNA?

School are very aware of my concerns but have said they haven’t seen any of these at school. At school he is one of the better behaved children and listens well along with doing what he’s told. Soon as he finished school a mask comes off and the chaos begins haha

Appearing to cope at school and exploding at home isn’t rare. It is known as the coke bottle effect and signifies unmet needs at school. If school life was easier, home life would improve too. The school needs to provide more support. There will be signs. They just aren’t seeing them or recognising them for what they are.

He had to ask the school to fill in a section.

It isn’t essential to complete the ‘more information from someone who knows the child’ section. Neither does it have to be the school.

It isn’t essential to complete the ‘more information from someone who knows the child’ section. Neither does it have to be the school.

Sometimes you have to pick your battles and as they agreed to do it, it doesn’t matter. If they’d refused, we would have offered to do it. While DGD is a quiet perfectly behaved little girl 1:1 or among relative strangers, it’s a whole different story when we sit down to do activities with her (all the attention of a butterfly) and like a whirlwind with family. In reception, they had her sitting next to the teacher on her own, because otherwise she was looking out the window or distracting all the others.

I was just pointing out for the benefit of others reading DS didn’t have to get the school to complete that section because some people think it is mandatory and it isn’t. It isn’t about picking your battles. Not completing it or having someone other than the school completing it isn’t a ‘battle’, it’s just a choice available to people.

Thank you! Having a stressful time atm, on top of lack of sleep!