Is there any help available for toddlers with suspected additional needs?

[CouldIBeAnymoreOuting]

I have several concerns about my 21 month old and I’m not sure what help is actually available at this age or where to begin with looking for support.

He is my fourth child and ever since day 1 has had much higher needs than his siblings. My eldest son is diagnosed ASD but that wasn’t until he was at school, and I don’t know what support, if any, is available for a toddler that I suspect might have additional needs. My eldest also didn’t have issues settling at childcare which is one of the main issues we are having currently with my fourth.

Here are the main things we are struggling with at the moment:

Sensory issues - hates shoes and often won’t walk in them. Hates getting dressed and undressed. Hates the smallest drop of water on him. Gets distressed in the bath. Screams when strangers look at him or interact with him. Screams the whole time every time we go out to the shops, etc. It’s like toddler tantrums but with no idea of what has set him off.

Nappy changing is a 2 person job, or else very messy to deal with as he fights it so much.

Sleep - very restless and wakeful. Always has been since a young baby. Falls asleep by himself in his own cot with me or his dad in the room, but wakes every hour or two during the night and screams for long periods before falling asleep again.

Severe separation anxiety with me (mum). Began very early, 5/6 months ish and hasn’t changed since. Even around the house, he gets distressed if I am not in the same room as him, or not freely available to hold him / sit with him at all times. Gets distressed if anyone other than me or his dad holds him, even family members - covid lockdowns of course didn’t help with this, but I feel like his anxiety runs more than that as it’s been going on so long with little improvement.

Hasn’t been able to settle at childcare / childcare providers have said they can’t deal with him. Between 13-18 months, we tried 3 different childcare settings (2 childminders and a nursery), for a month each time. I am self employed and was meant to be back to work when he was 13 months old. But I have had to stop working in order to look after him full time. He is due to start preschool at 2 years, but I am worried he won’t settle there either / preschool will say they can’t cope with him. What happens next if I can’t get childcare for him?

I suspect we will be in touch with CAMHS when he reaches school age, but I am wondering if there is any support before school age? We still have 2.5 years before we get to that point and I am finding things very difficult to deal with and me not being able to work has put a strain on us financially too. Any tips from anyone that has been in this situation? I am currently waiting for a health visitor to call me back.

You can ask for a referral to paediatrics. If your HV won’t do it try your GP. As well as other things paeds can prescribe melatonin which may help with DS’s sleep.

There’s also Portage.
 In some areas you can self refer to OT, not all areas commission sensory OT now, but some do. This website may be helpful too, and this booklet. Some areas also allow you to self refer to SALT. If you can’t self refer to these in your area ask the HV or GP.

Have you been in contact with Home Start?

Do you get DLA for your elder DS with ASD and you carers allowance? You could try applying for DS too, but you may find it easier if you wait until you have referrals to professionals to use as evidence. Do you get UC? And have you applied for any grants you may be eligible for?



You can apply for an EHCNA and there are specialist nurseries (typically for aged 2+, some 3+). A month is still a relatively short space of time for a child to settle. If you do retry a nursery you can ask they get the Area SENCO for advice.


Thanks @Imitatingdory I hadn’t heard of some of those things like Portage. Looks like they are based out of the same hub as the health visitors so will see which services they recommend when I speak with the HV. Just today I have contacted the GP to ask for info on support to so will try and get a paediatrics referral through GP.

Would SALT be able to help in this situation? His issues are not really communication or eating based. Also not sure home start would help much, he gets distressed (noisily!) with visitors in the house and my husband is working from home so regular visits from
someone sound more stressful than it’s worth!

I do not claim anything for my older DS. He is nearly a teenager and has lots of coping mechanisms these days, we don’t need DLA for him. Also don’t claim UC and wouldn’t be entitled to any grants. I have no idea how claiming for DLA works and assumed he would need to have some sort of diagnosis before I would be eligible to claim.

I agree that a month is a relatively short time for him to settle at childcare, but so far haven’t found a childcare provider willing to try for longer. He screams and screeches constantly when not with me, and it is difficult when he is like that, there is nothing that will distract or calm him. It was distressing him further to keep trying with new settings, so we took a break from it in the hopes things would have improved by the time he was 2. He’s nearing that age now though and I can tell he hasn’t improved, in a lot of ways he has more challenges now.

SALT is often about much more than many realise, and someone with suspected ASD would benefit from SALT. I mentioned HomeStart as it may help with getting DS used to another adult in a safe environment at home with you around.
 Nothing would change straight away but they could help build a relationship, they may also be able to signpost you to other local services such as a SN playgroup.

You should apply for DLA for your older DS. It is likely you do lots to support DS that you don’t realise count. Have a look at the Cerebra guide. Someone with an autism diagnosis should be eligible for something. You don’t need a diagnosis for DLA, it is based on needs. Although it is probably easier for you to claim for your older DS than younger DS at the moment as it is easier to prove needs with professionals involved and the older the child gets.

If you do claim DLA for one or both (and you could then claim carers allowance) re look at UC as with disabled DC the maximum income threshold is often much higher than many realise.

Look up "(name of you LA) local offer" they should have a page telling you what services are available. In our area at least the pre-school diagnosis is much faster then for older kids, as you don't need to go through CAMHS. Our health visitor referred DS to a pediatrician, and we got his diagnosis about 18 months after the initial referral, even with covid delays.

You also don't need to wait for him to start school to get the ball rolling on an EHCP, he might be able to get funding for additional support at nursery or even a place at a SEN nursery if mainstream ones can't meet his needs.

You can apply for DLA on the basis that there is some sort of disability as yet diagnosed. DLA is for daily care and mobility needs regardless of diagnosis.

www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/disability-living-allowance/help-with-your-dla-claim/help-with-dla-form/

Apply for both of them. It will open doors for support inside and outside school, you’ll be entitled to free access or carers passes practically everywhere you go as well.

I would get on a waiting list for a private assessment rather than waiting for CAMHS. Or at least find out what the youngest age they can assess at is and aim for this.

For your elder child having the DLA and diagnosis will act as evidence for them getting for instance 25% extra time/separate room for exams right the way through education. If they are capable of going to college to do something practical or uni they will get a special support grant rather than a maintenance grant, much more funding and also get a support package of equipment (computer, printer, software etc) worth about 2k… maybe a transport allowance. Looking very far into the future but it is so worth having it properly registered for them for life going forward, no matter what coping strategies they have.

You can put the money towards equipment needed, private assessments, activities to calm the kids, specialised childcare and classes, private therapy, basically anything you think would make their life better. Some people also save it for the future to help move them into independence (driving lessons/house deposit). There’s a lot to help them both. Plus I think you then qualify for a disabled facilities grant, carers assessment, carers allowance (or underlying entitlement if you earn too much) and because you have 2 registered kids (or even if only 1) with disabilities you would then be entitled to either increased tax credits or UC award too….. (friends of ours who are professionals working full time still got an award despite decent salaries because 2 of their kids are Asd, one worse than the other)

Contact your local autism charity, I had one short phone call and they emailed me a tonne of advice and resources, incredibly helpful. And form a network with local parents via various organisations - this will help you find support in your area.

It will open doors for support inside and outside school

DLA has no bearing on support given in school. Nursery yes via the Disability Access Fund, school no.


For your elder child having the DLA and diagnosis will act as evidence for them getting for instance 25% extra time/separate room for exams right the way through education.

Having DLA does not influence exam access arrangements at all.

a special support grant rather than a maintenance grant

In England, university maintenance grants and special support grants no longer exist for new students, it is maintenance loans now and DSA is in addition to maintenance loans, and doesn’t require the student to be in receipt of DLA or PIP. Link


Plus I think you then qualify for a disabled facilities grant, carers assessment

Neither of these require DLA, nor a diagnosis.

@Imitatingdory speaking from personal experience re. support in school, college and university. I was interviewed regarding support arrangements and was asked re. DLA. I also had a Disabled students allowance which was granted on the basis of my having DLA (although this isn’t mandatory it is one form of evidence that can be used)

The special support grant replaces the maintenance grant in certain circumstances… it’s still on ucas and gov websites from what I can see.
www.ucas.com/student-finance-england/living-costs-full-time-students#special-support-grant

Re. Disabled facilities grant and carers assessment, sorry should have typed “also qualify”, rather than “then qualify”. Typing quickly.

Thanks

@Imitatingdory sorry I have just read that they’ve abolished them now. How horrid.

Nevertheless, I don’t know why anyone wouldn’t want a DLA support payment if they’re entitled to it.

As you can see from the government link I posted, maintenance grants and special support grants no longer exist in England for new students. The link you posted even states ”If you started your course between 1 September 2012 and 31 July 2016…” under the special support grants section and the government site only has it on the section for those starting their course before 2016.

DLA plays no part in support at school, college or university. Support is based on needs, not on whether the student get benefits.

PIP is unlikely to be enough evidence to qualify for DSA, medical evidence e.g. GP/consultant/diagnosis letters are required &/or an SpLD or EP assessment.

Update after some sleuthing it is now the “special support loan” which you get instead of a maintenance loan if you are eligible for DLA. What this means is that if someone is a student the income they get from the loan is not taken into account for means tested benefits.

www.welfare.qmul.ac.uk/guides/extra-undergraduate-student-finance-living-costs/

@Imitatingdory all I can do is speak from personal experience I was a student for a long time. I submitted the DLA letter and had assessments with disability services in college and two unis. I was given the DSA without question.

@CouldIBeAnymoreOuting sorry for the derail into considerations very much further down the line! I sincerely hope you are able to get all the support for your little one and your older child. The recommendations put up by the other posters are excellent and I’ve taken note for my own child too - thank you.

Robinni sorry I cross posted previously without realising. I think, like everything, support is harder to get now than it used to be, the change from the grant to the loan and only if you are eligible for the means tested element, and DSA often expecting students to contribute towards the cost of a laptop among many other things. It would help if all the loan wasn’t counted for UC rather than just the additional amount.

Yes, I think people should apply for DLA where appropriate but I didn’t want people to think I they needed it for certain things when they don’t necessarily.

@Imitatingdory Completely agree, they have made it much harder for disabled people. I’ve felt it has been a real fight just to have a level playing field for myself and now my DS though we have different disabilities.

For me I remember the loan didn’t count, but the grant would have, so the SSG was helpful. I’m sure the SSL replacement is at least of some help.

Completely agree, most support is needs based and down to gp/hospital reports, but I did find the DLA award letter gave things a kick forward and I had less hassle.

For us having the award for our child means we can send him to after school and holiday schemes when school is off to improve socialisation (and tire him out so he sleeps better!!), we can cover the cost of recommended books and sensory equipment, various therapies, respite breaks, getting him a dog for therapy, play equipment to help with his motor skills, tonnes of stuff to help with school… the list goes on. For our friends the amount they get is collectively like a third wage coming in so they’ve moved to a bigger house with a garden as their kids have very severe disablement and really do need the space. I think they’d have really struggled to cope otherwise.

Thanks for all the advice. GP has just said “Speak to the HV” and that was that, so not particularly helpful. Waiting on HV to contact me about doing a slightly early 2 year review and discussing support options.

Regarding claiming DLA for DS12 who is diagnosed ASD, I have looked at the application form and there is nothing on there that I could honestly make a case for him, at least right now anyway. I have been told that a diagnosis does not always equal DLA eligibility, it’s dependent on needs, and he has very low needs at the moment so I don’t feel we need to claim for him. He gets support from school and is on the SEN register etc, this thread wasn’t to ask advice for him, I only mentioned his diagnosis to show that we have prior experience of the journey to diagnosis, but I can’t access those same routes right now with my two year old as he is currently much younger.

If we get to referral stage, I will definitely seek DLA for my almost 2 year old, as i have been prevented from returning to work so the money is more needed. I have also been waiting half a year for a referral for my 6 year old who has daily day and night enureses and definitely has DLA needs due to the amount of laundry, nappies, and hourly care that he needs. I am waiting for documentation from his referral to support a DLA application. We were only able to request referral once he turned 5, it’s been a long process and we still haven’t seen anyone about him yet. Not relevant to this post but just want to make the point that I am familiar with how the DLA assessment process works and my eldest child is the least of my children who needs it right now. I’d rather keep the focus on support and advice for toddlers / preschoolers with additional needs as this is an area I have little experience with.

If the HV won’t refer try the GP again.

When you apply for DLA look at the Cerebra guide, it includes points many people don’t realise count.

If your 6 year old has already been referred but you are waiting to be seen ask the GP for a copy of the referral letter so you can use it as evidence when applying for DLA now.

While a diagnosis doesn’t necessarily mean DLA is given, as you quite rightly say it is based on needs not diagnosis, in order to get a diagnosis one must have difficulties with the triad of impairments that “limit and impairs everyday functioning”.

We found the HV was useless, spent 2 years telling me I was a fussy Mummy. By the time she was prepared to come out to detail a referral letter we were into lockdown and then went off on leave for a prolonged period.

I took matters into my own hands and asked our GP to write a referral letter as HV had let us down. They did so but we were told more information was required. His nursery teacher provided a 1 page bullet pointed account of the issues they saw (she had clearly a lot of experience with autism). I also provided a parental report: name, DOB etc at the top, then three sections:

1. Background: sequentially laid out when issues first began, what exacerbated them through time and how they got progressively worse, what childcare and nursery found, what help we sought and when.

• for the next two sections I looked at autism symptoms and guides online to see the sort of wording they would be looking for and where my child fit in, I also tied it with the Nursery report as we were having similar issues at home.

1. Social and communication difficulties: bullet points detailing issues with things like eye contact, own agenda, reciprocal conversation, sharing, emotional regulation, meltdowns, inappropriate behaviour, problems with following instructions and completing tasks (eating, dressing), special interests, speech issues.

1. Restricted, repetitive behaviours, sensory issues: bullet points detailing reliance on routine, special interests, hand flapping, rocking, issues with sound, hearing, temperature, taste, smell, proprioception, and examples of problems this causes (think bath time, hair cuts, hand dryers, hoovers, eating, seeking to be held tightly with strong pressure and physical reassurance constantly etc.)

Once I sent this information off the referral was accepted, on the basis of this I then went via a private provider to have him assessed as the NHS wait list was 3 years and this is too long. Normally it's about 3 months for a private assessment but due to covid it was 6 months.

From when his symptoms became really evident at 3 it took about 2 years for diagnosis, a year longer due to Covid as assessment wasn't possible with social distancing. I regret now not applying for DLA immediately (care is paid from birth, mobility from 3 (severe) and 5 years), however having the final assessment report did help to fill in the form it was very emotional to go through.

Re. the specific issues you listed

For dressing, undressing and nappy changing we resorted to letting DS watch cartoons or listen to music on phone if hysterical - he kept still -, he also had a dummy that sometimes helped, I did and still do a lot of singing and game playing/role play to distract and relax him.
He really liked dinosaurs at one point then, sea creatures, whatever it was I'd mould the games to this as it got his attention. i.e. "and now at dinosaur mountain the big trex is coming to get your t-shirt". Sing your fave songs tune with words appropriate words to task...

For the bath, we had to lower the temp of the water to lukewarm, he likes things as cold as poss, I had to bath with him for a while, we use a jug rather than shower for rinsing and put a cold cloth over his eyes post shampoo wash.

Out and about, avoid busy times, bring sunglasses and ear defenders if the environment is massively stimulating, have a tablet and a bag of books, puzzles and toys for distraction, maybe some sensory foods and toys. Avoid anywhere with a strong smell ie. soap, candle shops and anywhere with air fresheners.

Sleep wise we had similar issues, for a period of a few months he wouldn't go to sleep unless driven about for half an hr. Then he began to settle if we lay beside him for a while or stayed in the room. Eventually it got better about 2 1/2.

I've had similar issues with not being able to pursue study/work I've wanted to do. It's an adjustment but I've accepted I have to mould life around him for the time being as his needs require me to be available.

I hope this helps and you're able to pursue the avenues suggested for more concrete support.

Thanks @Robinni I do all that you listed with nappy changes but nothing distracts him. Chocolate buttons worked well for a while : )

My main concern right now is that the preschool he is meant to attend from Sept when he is 2 will say they can’t cope with him, as we’ve already had that happen with 2 childminders and a nursery. So I’m looking ahead to what the next steps are if that does happen. Can we look at specialist nurseries if he isn’t diagnosed? What help is available if we can’t?

I have some emails and letters from the previous nurseries and childminders detailing why they couldn’t keep him in their setting, so I will keep hold of those as supporting evidence to send in to the GP / health visitor if needed. Otherwise, for now it is just my experience as evidence, as we haven’t managed to get him to successfully attend childcare for longer than a month.

I am hoping that the preschool he is going to start at will have more protocols for a child that is struggling and if they decide it’s not the right setting for him, they will have a duty to help us gain a referral / signpost us to a specialist childcare that might be able to help him?

You should apply for an EHNCA. You don’t need a diagnosis for an EHCP and you don’t need to wait until he starts preschool.

There are specialist nurseries, you don’t need a diagnosis - some for aged 2+, others 3+. Some areas require DC to already have an EHCP in order to attend a specialist nurseries, but some have assessment places where DC can attend whilst undergoing an EHCNA.

Depending on your area the preschool may be able to apply for Early Years Inclusion Funding, but in some areas they can’t until the child is 3. If you apply for DLA they will also get disability access funding at 3. The preschool can ask for advice from the Area SENCO, too.

An OT may be able to help with ideas for nappy changes.

@CouldIBeAnymoreOuting I’m with you on the chocolate buttons, one for baby one for mummy just to get through the stress of it.

Agree with everything that @Imitatingdory has said above - get all of those assessments done ASAP the quicker the better and push for the support. Ring the DLA office and get a form sent out tomorrow. CA will help you fill it in if you struggle. If you already have the letters from child minders etc. Saying why they couldn’t accomodate him, that + your own observations + that you are awaiting x,y,z assessments should be ample to support the DLA claim.

www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/disability-living-allowance/help-with-your-dla-claim/help-with-dla-form/

@Imitatingdory seems to know what they’re talking about, so go with that for nursery.
At the point where our DS issues became more apparent we were plunged into lockdown and I took a lot of the behaviour to be trauma from that. Then when he started a mainstream nursery they raised concerns almost immediately, said they could cope, but that further on it would be difficult. I suspect he will need a classroom assistant as tends to be on another planet most of the time. However, there is hope - he has settled more than I ever thought possible and has a friendship group now. Much better than at 2-3yrs, I hope your little one also finds somewhere he will settle and be happy.