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SN undiagnosed genetic conditions

Severe autistic trait toddler help

10 replies

Emmaevanroo · 30/03/2019 14:37

Hello everyone,
I'm absolutely desperate for help,
I have a son R who is two in two weeks who is showing every single sign of autism, the list is super long but to summarize the important ones, he doesn't and has never made eye contact, he has never responded to his name, even after a speech language course he can only mutter sounds he doesn't use words or associate the sounds with anything, he doesn't feel pain or fear, he hates crowds and other children he will sit by himself and line up balls in colour order instead. I mentioned all this to a health visitor and she instantly mentioned autism and said wait, but when I applied for nurseries and they looked at his red book they said no we can't have him here until he's either said he's definitely not autistic or he has a diagnosis as he's too big to wrestle with (he is a big toddler, he is in five to six clothing and weighs four stone but is healthy).

So since this I have been to the gp on numerous occasions begging for help, he doesn't sleep through the night ever as if he drops the label of his blanket he will scream awake and sometimes he just wakes up screaming for no apparent reason, aswell as this R has an older brother and during school run R keeps having meltdowns over the crowded playground and he will meltdown completely at rain regardless of how I cover him so daily life is more or less housebound because when R gets stressed he is sick, physically sick or will get illness which is then passed through the family.

We saw the pediatric Dr yesterday who was of no help at all, said he was elligable for genetics testing but would be further down the line, and that he agreed he shows every sign of autism but told me it would be a long road and a fight for a diagnosis, he said my next appointment would be In the next three months, but I am at a breaking point I can't keep doing all this without help or even advice on how to help him when he gets stressed,

Has anyone been in this sort of situation and how did you get help?? I've had at least five doctors say he's autistic but none are willing to diagnose him, I need help soon and feel like I'm banging my head against a brick wall
Any help or advice please would be greatly appreciated
Many thanks

OP posts:
ElyElyOy · 08/05/2019 14:25

I’m only new on the road so not much help but I can’t understand your Nursery saying they won’t take him.

Have you looked in to other nursery or pre-schools? My son starts pre-school soon and they have no issues whatsoever taking him without a diagnosis: they have advised that if they feel he needs 1-2-1 they will arrange it and advise me on the process of applying for extra help etc, but they are waiting to see how he gets on first (I will be there initially, and then will stay local for a few weeks so I can get there if there’s a problem).

There is something called Local Offers which should have details of support groups and portage etc, your HV or sure start Centre should also be able to help.

Angelical · 11/05/2019 08:46

In my experience, it was my son's nursery that arranged every assessment, paediatric appointment, and 1:1 funding.
I think you need to find a nursery that will take him and work with them to get the ball rolling. In the meantime, you need help to manage his behaviour, so talk to the GP of HV or other parents that might be in a similar situation to see how you can access early intervention.
It is infuriating that everyone is talking about early diagnosis of autism, but the help and therapies are just not accessible.

Pandasarecute · 15/05/2019 22:00

Does he have speech and language therapy currently? You could do with portage which is pre school education in the home, they can start the ball rolling for education. I'm really tired and to bed now but will check back tomorrow and see if I can help.

LooksLikeImStuckHere · 15/05/2019 22:03

Perhaps search for specialist nurseries? There may be more information on your Local Offer.

stucknoue · 18/05/2019 22:12

My dd was diagnosed at 2 so have been there. But remember that diagnosis isn't the same as meeting his needs - nurseries will access services based on need not diagnosis. Check out local offer as others have said because you can find out all your options and your gp or paediatrician can access other services as required, eg speech, ot.

The genetic testing is to see if there's an underlying cause, dd was tested and there wasn't but they tend to test kids who present as non verbal/under a certain age.

Social services are the other people you could try, but do think about what you are asking for, he's very young so whilst you are right to be concerned he won't be needing much beyond that of a normal child. We did early intervention (in the US where we lived then) but there's no equivalent here, but you could do aba therapy yourself. Best wishes

lorisparkle · 18/05/2019 22:23

Where I live some of the special schools do 'stay and play' type sessions for younger children even if they don't go there in the future. It might be worth talking to your health visitor to see if something like this is available. It is so frustrating that parents have to push so hard to get the support you need.

Emmaevanroo · 18/05/2019 23:38

Thanks everyone for replying I think my main issue is we are housebound as he is sick when he is stressed, we have just been told he also has an immune system problem so he's got a constant cold which can worsen very quickly into a flu so we are extremely limited in what we can do outside of the house. He is now two and three months and he still can't say any words, have done all the speech therapy and he just can't or doesn't want to yet which doesn't help us understand him or his needs. His behaviours are getting more progressive which is the worst thing, people who come into my home have to smell like me or he will scream, bite and vomit at them. I've tried ear defenders but he hates things touching his hair... I feel so terrible for not knowing how to address him, I can manage wouldn't go as far as saying cope, with him but it involves being inside all day and even then he's poorly or stresses about wet hair, strange smells, dogs barking, people knocking at the door. He seems to be getting stressed at more and more. The nursery he was supposed to be attending have just come back to me and said he will be in a group where it is 1 nursery assistant to 5 children and I know for a fact they won't cope, he doesn't feel pain or fear or sit with other children, he will push and climb them or get stressed and just vomit and scream the whole time. He's got his first autism clinic appointment next month now but they've said they don't know what they can do to help. All this and I'm trying to get my older son into a special school aswell.

So sorry to rant in here the special needs processes are such a dreadful thing when you just want help and advice.

I have begged my gp my family professional and my local offer for a social worker as a single mum with no family nearby I'm finding it extremely hard to cope with both boys needs but nobody wants to give me one, they keep telling me I love my children too much to put them in any sort of risk and that I'm doing such a good job...

I know I'm doing my absolute best but I only get max two hours broken sleep a night and it's utterly soul destroying seeing your child get stressed, ill and sick doing the simplest of tasks or activities. I'm going to keep updating this post with my progress just incase it helps someone in the future.

For now I've had to get a loan for a private autism assessment for my eldest 6 year old, gone for a nice guidelined place that is accepted by both local authorities, only paid because he has struggled and was a vulnerable safeguarding issue at two mainstream schools so would like him in a special needs school. I am stocking up on smells I know my youngest son likes because even a change in the air seems to stress him out (people having bonfires and different perfumes). I have applied for an ehcp from the council for my eldest son and will do so for my youngest after he's attended his first autism appointment.
Home start a charity where a lovely volunteer comes and sits with me for an hour a week and types up all the boys behaviours and everything they can see to help with the diagnoses process and also sometimes kids bearing in mind I can have a warm cuppa and an adult conversation.
I have had to throw away any clothes that have a different feel to them, shiny tops, sequined tops ect. As my youngest hates them and wouldn't come within a radius of me.
Ear defenders are amazing on my high functioning son and it mostly (bar some rude judgemental people who do come and ask, normally in the most inappropriate way or time) will stop people approaching my son which makes him less nervous and more confident when out and about. I'm currently trying different pillow cases aswell have silk and jersery ones (from primark) to see if that help at all with sleep and have been spraying them lightly with lavender before bed which is what I smell of incase you wondered.

If anyone else has been in a similar position or have any advice I'm so grateful for each and every comment. It's such a loving community to be in. Thank you

OP posts:
Emmaevanroo · 18/05/2019 23:49

I have spoken to local offer we are in the middle of two counties so both are trying to get me to go to the other basically, but all the groups, nurseries and schools that would benefit him are a good fourty minutes away, when we have a ten minute limit on him being out of the house as is he physically stress sick, and I only have a car part time (share it) so I don't have a way of getting there either. I will look into portage though thank you all so much.
I'm grateful for the nursery telling me they couldn't handle him because I do understand he's quiet complex in regards to his behaviours and without his diagnosis it makes it hard for them aswell. Unfortunately I don't have money to move and I've tried exchanging but nobody wa fs my place so kind of butted that option out aswell. My eldest son is getting assessed next week so will see how that goes as my youngest has had to take a back seat for the past couple of months as his older brother needs my attention and understanding more
Thank you all I really do appreciate the time you've taken to read and reply

OP posts:
helterskelter3 · 18/05/2019 23:51

It might be worth trying to get him into a school nursery if you have one nearby. Many take children from 2 and schools are often in a much better place to set assessments off. They will apply for the EHCP for you.

BackforGood · 19/05/2019 00:05

Tell your HV you are at your wits end.
Say you need a carer's assessment
Get in touch with Disabled Children's Social Care at your local council
Get in touch with your local council and ask about portage
Get in touch with Contact (used to be Contact a Family) - they will help you with all sorts from benefits to finding support to legal rights
Get in touch with National Autism Society.

SN Funding and care in this Country is appalling and "we" (as society) should be thoroughly ashamed.


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