ADHD - what do you do when you just can’t cope with your child any more?

[Parsley91]

Ds(6) isn’t diagnosed yet but I am certain it’s adhd. I also have a 3yo and a 2 month old. I feel so overwhelmed by DS1 that I have seriously considered telling health visitor that I have post natal depression just in case there is support for someone who just can’t handle parenting their own child anymore. I just need someone to take him from me a couple of days a week. I just can’t take his behaviour anymore. I know I might feel differently for a few days but then he’ll start up again and I will feel like this again. I can just see my future laid out ahead of me - like good lord he is only 6, and what if he gets worse? When he gets diagnosed, what support is there for parents? Is there respite ie help with babysitting of some kind? I know I sound incredibly selfish right now and I fully expect some scathing replies about taking responsibility but I have never felt so low in my life as I have when he has one of his episodes. Worst of all as I am always trying so hard to be the perfect parent to him, my other two who are so well behaved in comparison get some much less time and attention. I literally don’t know who to turn to.

Ps I have no family, no friends and no money. I also have no time to make friends. So there’s no way for me to get support in the normal ways

Do speak to your health visitor. You don't need to say you have PND if you don't think you do, they will help you regardless.

Are you in receipt of DLA for DS?
Does he have an EHCP?
Have you been in touch with homestart?

There is respite available, but parents often have to fight for it. You can apply for a carer's assessment for you and an assessment for DS by the disabled children's team.

In our area you would need a diagnosis to access DLA, medication, respite. Is he on the referral pathway? This can take up to two years in some areas.

In the meantime, the school should be able to refer you for more general support, as a family in crisis.

It is very difficult to say what you might be offered as provision varies so much across the country, but here it could be home visits from a specialist and/or a parenting workshop/support group.

I would tell the SENCO at school that you need help. Your situation may not meet the threshold for support, but they can certainly refer.

You do not need a diagnosis to access DLA. What nonsense! It has nothing to do with what area you live in. DLA is needs based.

LAs who insist on a diagnosis to access respite are acting unlawfully.

Surely you need a disability or health condition to claim Disability Living Allowance?

"LAs who insist on a diagnosis to access respite are acting unlawfully."

Yes in our county respite and short breaks have strict, published eligibility criteria. The threshold for support is quite high. It is not open to every struggling parent.

For DLA a child needs to have difficulties, but a diagnosis is not required.

Cerebra guide - "your child does not have to have a diagnosis of a recognised condition or disability in order for you to claim DLA."

Also see this Citizens advice page and this Contact page.

Under section 17(10) of the Children Act 1989 social care have a statutory duty to assess, safeguard and promote children in need. Children in need are defined as:
Children under 18 years of age and:

• are ‘unlikely to achieve or maintain, or to have the opportunity of achieving or maintaining a reasonable standard of health or development without the provision of services by a local authority’, or
• whose ‘health or development is likely to be signi cantly impaired or further impaired without the provision of such services by a local authority’, or
• are `disabled’. 


No diagnosis is needed, see here. Therefore, it is unlawful to only provide services to children with a formal diagnosis/refuse based on a lack of diagnosis - for a start many children with complex needs get through life undiagnosed.

Under the CAFA LAs must assess parent carer's if the parent carer requests an assessment or if the LA believe the parent needs support. Again, no diagnosis is needed, see here.

That is very interesting, thank you.

I obviously don't have any involvement with DLA beyond filling out our part of the paperwork but must admit that I have always looked at gov.uk and taken this paragraph about eligibility to mean that they must have a recognised disability or health condition :

The child’s disability or health condition must mean at least one of the following apply:
• they need much more looking after than a child of the same age who does not have a disability
• they have difficulty getting about

One of your links has the following paragraph which obviously says differently:

Any child who has a disability or illness might qualify for Disability Living Allowance (DLA), and you don’t need to wait for a formal diagnosis to make a claim. It is sufficient that they have some form of disability.

Does this mean that you are on the pathway to a formal diagnosis? Or that you can apply without ever pursuing a diagnosis?

A child can have a disability but not be diagnosed. I think you are wrongly equating having a disability to mean having a diagnosis, which isn't the case. You don't need a diagnosis to have a disability.

The Equality Act "defines a disabled person as a person with a disability. A person has a disability for the purposes of the Act if he or she has a physical or mental impairment and the impairment has a substantial and long-term adverse effect on his or her ability to carry out normal day-to-day activities (S6(1))."

The guidance states "It is not necessary for the cause of the impairment to be established, nor does the impairment have to be the result of an illness."

You don't need to be on a waiting list for diagnosis, you could, in theory, apply without ever pursuing a diagnosis. It is reasonably common with ASD for parents not to want to seek a diagnosis for their child, but the child still has all the same difficulties they would have if they were diagnosed. They could still claim DLA. To use another example, a child of a friend has muscle wasting, HCPs aren't sure why, no diagnosis, but they have a significant mobility impairment and get HRC/HRM.

However, what you do need is evidence. In order to evidence a child's needs you are likely to need evidence from outside agencies, but that could be evidence focusing on a child's needs rather than aimed at getting a diagnosis.

Thank you so much. I am always looking to improve my practice and am genuinely interested.

In the case of muscle wasting, I can see how a diagnosis or 'reason' would not be needed - it is enough to observe that the child has muscle wastage, and associated mobility issues, presumably evidence by a paediatrician's report and so on.

But how would you go about evidencing a SEN without at least being on the pathway for a diagnosis? Which outside agencies and professionals would be available to support the application without a diagnosis? What evidence would be acceptable? have genuinely never completed DLA paperwork for anyone who didn't have a diagnosis and am very happy that the threshold to claiming DLA is much lower than I had thought.

Many parents are put off applying because they think you need a diagnosis.

The need for evidence is the same whether you have a diagnosis or not. For someone with a diagnosis it's not enough to have evidence of the diagnosis, you need to demonstrate the child's care, supervision and mobility needs. Two children with the same diagnosis may not receive the same award since it is based on needs. The more evidence you provide the higher the chance of an award being made. It also somewhat the luck of the draw depending on what DM's desk your claim lands on.

It depends on a child's needs as to what evidence you would need but it may be an EP report detailing a child's difficulties, school IEPs/reports/communication diary, OT report showing sensory differences or poor self help skills, play therapist report showing SEMH difficulties, evidence EH are involved, copy of GP notes about a child's meltdowns/lack of sleep/refusal to walk, a paeds clinic letter for e.g. migraines that also states the child's difficulties with communication, interaction, attention, hyperactivity...

Why do you think it is enough to be able to observe muscle wastage but not enough to observe a developmental difficultly? Muscle wastage may have an obvious mobility impairment, but a child without a diagnosis may have obvious care and supervision needs. The communication, interaction and social difficulties are the same and can be observed whether the child has a diagnosis for them or not, as are the meltdowns, masking and sensory differences...

Nursery reports / assessments were used as basis for our DLA claim as they detailed care and support needs.

There's lots of great responses here. My knowledge of PND is that the sooner you have help, the better. So, definitely worth flagging with GP/health visitor. In my experience, actual respite/help is hard to obtain without a diagnosis and also it's usually provided through the Children with Disabilities teams in the LA (different to education team). There are no standard procedures across the UK so you will need to find out the system in your local area. You GP/HV should be able to advise.