Dla supporting evidence

[Winxx]

I’ve been encouraged to apply for dla for my 3 year old dd. She has multiple food allergies and under assessment for autism.

I’m a lone parent and as she’s become older I am finding parenting very challenging. I know it is for everyone at toddler age and well it doesn’t just stop there but most days I just want to scream and cry!

I really feel the struggle and wish I could do better, everything is just broken or destroyed and she’s really hurting me- not intentionally just running up and down but pushing against me really hard or when I’m trying to cook, just pushing and pulling me. I spend all day and night with her playing, taking her out to release energy otherwise she just become destructive but if I need to do something I can’t. Meltdowns constantly. I feel embarrassed going out in public and supermarket shopping is so difficult, if something is out of stock or I won’t buy a particular item because we already have it or it’s an allergen it just turns into a huge meltdown. I get scared around car parks and high streets as she just darts around everywhere, even in Tesco running around unaware of trolleys etc. I have to use a buggy or harness.
meltdowns if we eat different foods, I try to make them as similar as possible but eg I’ll have wheat pasta and she’ll have gluten free but meltdown as she knows they’re different. meltdown as we can’t buy any food out due to allergies, which is fair but it’s so difficult as she’s aware of what other people are having and likes the look of cakes etc which is always answered with no sorry, that’s an allergy.

It just sounds like I have an energetic spoilt toddler which I do but man I wish I just had a break. Boring read as all I’ve done is vent!

Now for the actual question, what supporting evidence can I provide?!

-She was diagnosed with allergies since 4 months and about 20 allergies since 9/10 months, still ongoing. we have EpiPens.
-we have speech and language therapist
-occupational therapy
-we’ve seen a paediatrician recently who made the autism referral

Thats about it. It sounds like nothing and honestly I am not expecting anything, I am just going by what her allergy doctor advised I do which is apply. She actually told me to when she was a baby but I haven’t had the time, and the paediatrician also advised it too so I thought I’d try now.
if anyone got to here, then thank you and sorry for the venting but it was nice to type out x

First of all, your not the only mother who struggles and you seem like your doing a fantastic job with your daughter.

I have twin daughters also three which are very much similar to your daughter. We have just been accepted for DLA for both of them. We was told to apply by our paediatrician.
We get High rate care for hoth and High rate mobility for one.

They both have autism, ADHD, global developmental delay and loads of other issues and one has multiple mobility issues also.

Everything you just put on this thread put it down on the forms as it will really help. We had reports from paediatrician, reports from speach and language, occupational therapy reports, letters from GP, health visitor.

My advise is to keep a detailed diary over the next week to two weeks regarding her daily care needs and her night time needs. Then log it all and send off as evidence. My daughters are constantly attached to us all day and only sleep 2-3 hours a day/night. They have both been prescribed melatonin. But i am all to aware of the meltdowns and its very common with children with ASD/ADHD. And your daughter sounds very similar to them. I will help or give advise if you need it.

The cerebra DLA guide is excellent to work through to do the form, something from the SALT, paediatrician and OT should be plenty along with a copy of their prescription or something from the GP to cover their allergies.

I have a non verbal autistic 5 year old and you just sound like a mum that's trying their best to parent a child whose needs are much more than typical toddler level.
It sounds like they re sensory seeking a lot, now it's very trial and error but look up heavy work and sensory integration, maybe give you some ideas of things to help. For example when my son's trying to repeatedly climb us we give him a tight squeeze or wrap him in a blanket and that sometimes calms him, but sometimes you could do everything and it doesn't work.

One of my 3 year old twins is non-verbal and is averaging at 9 months old developmentally. We have to use a weighted blanket and wrap our arms around her when shes dysregulated to help her regulate her emotions as she can pass out from holding her breath.
Its awful when you feel like theres not much you can do. But all us mums are trying to do is help our children the best we can. Its awful she feels this way, and i can admit at times i can feel the same way. I have 5 children and 4 of them have adhd and autism and one with adhd and they are have all different needs and sensory issues. Its all trial and error until you find something that works.

Breath holding spells must be frightening.
Yes my son's developmentally about 12-18 months in most areas now but that's only a more recent thing, he was under 12 months for a good 3 years really and paeds is being difficult in not funding a learning disability assessment although so many people have implied he has one.

We haven't had any luck with weighted items but fortunately hes been going to his brilliant Sen school for 4 months now and they have an awful lot of sensory regulation options available so he's a bit calmer after school, just the weekends and holidays now where he doesn't get that where he finds it harder.

Theyre very frightening especially when they pass out, turn blue and dont come around for 1-2 minutes it feels like the longest two minutes of my life. Her twin sister is at 12 months so a little better but she just nuts and hits everything and everyone. Especially if shes exposed to sudden loud noises.

Is that the same as Global developmental delay assessment? As both mine have been diagnosed with global developmental delay. Theyre currently undergoing genetic testing now too. To rule out any other possible health issues and contributing factors. But i believe its due to the autism.

I dont understand that, surely there is clear evidence that he has learning difficulties then obviously an assessment is the next step. Sometimes i think its all about the money and not the actual childs needs. My oldest with autism has dyslexia and dysbraxia and we had to fund the testing for that ourselves.

May i ask how you got him in a SEN school please. Im struggling to find a nursery willing to take my twins on as they have extensive issues and need tons more care then your typical three year olds. I definitely think they need a SEN school as they hate being in crowded enviornments and can be unintentionally violent.
Thats amazing for him though that the school he is in is able to accomodate his needs as that is very hard to find. I get what you mean about the weekend struggle as i have the same issue with my two oldest daughters one has both adhd and autism and the other adhd. The change in their daily routine sets them off. Are you able to implement some of the stratergies used at school at home. My oldest girls school are brilliant with working with me to inform me of new stratergies theyre using for my girls and i try my best to use the same at home. Dont get me wrong some things work and some dont.

Essentially as my son walked and crawled on time they didn't give him a GDD diagnosis and my NHS area won't fund learning disabilities assessments as they don't have an educational psychologist on the team so say you ll have to ask the council. The council uses all the educational psychologists they have on staff for EHCPs and even then the delays were ridiculous.
His EHCP was actually done by a private EP we found but she couldn't do the tests needed there and then for a learning disability assessment.

Yes his school always shares when something goes well so we can try it at home, sometimes he does just seem to feel that certain activities are for school only though.

Yes of course I don't mind, we applied for his EHCP when he was 3, as I say had to get a private EP report as they were so delayed when usually the council sends one of their own out and then SALT, specialist teachers and the paediatrician and his nursery all said in their reports that they thought he needed xyz provision that only a specialist school could provide him. Then when they agreed to issue the EHCP I ask them to consult the 4 closest Sen school and fortunately they agreed to give him the place at the very closest one 2 miles away.
I think the fact it was multiple professionals saying the same things that he needed and that nursery had so much evidence what hadn't worked so they couldnt try to say mainstream schools should be tried first.

He did go to mainstream nursery two days a week for a couple of years but struggled to cope towards the end, I think we got that nursery place after 3 nurseries said no. Some councils have a childcare brokerage service that will help you find a childcare place or if they have a portage worker they might be able to help.

Thats absolutely awful especially when he shows multiple signs of GDD, im so sorry your having to fight for your boy!

Im so glad you was able to get him the help he needs though and he is in the correct school that are able to support him and his needs.

Thank you so much for the information your given me, im sure it will help me.
I may have to look into applying for an EHCP myself and try fight to get them into the correct nursery. Like i said they do have GDD, autism and multiple other issues. Theyre under a neurological paediatrician, having genetic testing, under speech and language and have multiple different professionals in place.

I am waiting on a inclusion support officer which is like portage i believe so hopefully i will be able to get them into the correct school very soon! But tbh theyre not very good and we are on our third one as they keep going off on maternity or i just dont hear from them!

Yes definitely consider applying for their EHCPs yourself.

It is about quality of evidence rather than quantity.

Evidence from the paed, SALT, OT and the immunology and allergy consultant can be enough.

Is there a specialist allergy nurse? Have you had contact with the HV? Does DD attend any childcare? Is she under Portage if your area still has them?

@1995SENNDMUM if DS likes the sensory input of being squeezed but doesn’t like weighted items, DS might like a steamroller, a bodysok or cuddle ball.