Struggling - Autistic Toddler options??

lightspeed

Hi

Myself and my partner are really struggling with my daughter. She is 2 years and 3 months old.

She awakes every night sometimes twice a night with loud screaming tantrums. She now constantly throws tantrums, slapping herself on her head or banging her head against her cot, or a door etc.

She is non verbal, has no way of communicating and making no progress in this regard.

She rarely eats and will only eat biscuits, ricecakes, some toast. The creche mentions the above to us also.

I have had continuous chest infections and flu since January and I mean sick every week. I think the lack of sleep is really affecting my immune system.

There is still no gesturing, no eye contact and only rarely responds to her name. There has not been a diagnosis but she is ticking all the boxes for autism.

With regard to the future I feel it will only get worse. I personally find myself wondering is there any care facilities that look after severely autistic children?

Are they only open to teenage children with severe disabilities? If not how much does private funded facilities cost?

Anybody experience similar and able to answer the above?

Be right back

Have you spoken to your doctor or PHN about it?

lightspeed

Yes she is has been to community medical doctor for check ups and has been referred to CNDT for clinical psychologist, speech and language assessment and I think also an occupational therapist. I'm not sure how many years before she will be assessed.

We have been over a year on the list and told it should be some time April hopefully for speech and language assessment but then there is a 19th month wait time following this for intervention.

I feel deflated that all these appointments are just going to tell us what we already know which, I'm 99% certain is that she is autistic.

As she makes no eye contact or any engagement I can't see how any intervention will work. Feels like it will be like trying to teach a dog or cat how to talk and behave like a normal human.

Redniallers

Hi OP,

I am sorry to hear you hear of your challenges. I can completely relate. In fact I am just after putting my little one down now who hasn’t slept a full night ever. She is also non verbal and every day and night is a challenge. We were able to get some support from Jack and Jill for the last few years which she will age out of soon as it stops at 6. My wife and I try to share the load and I’d be lying if I said it is easy. We each schedule out the nights/morning so we can each get some rest when we can. All I can say is while I know it is a huge challenge she chose you guys to look after her because she knew you would do your best. All you can do is try. My advice is to seek out other parents in similar situations. We started in a special school in September and we meet so many parents like us (and you) and we get some comfort from it. We also have a special bed which was an absolute game changer for making our lives easier. It’s called a safety sleeper, check it out. Best of luck.

coffeyt

Hi OP I don't have any personal experience but wanted to mention the following as it may be of some help.

my close friend has a son who has autism and is non verbal. For years he would wake during the night screaming. Someone said to her that often kids with autism can have food allergies so she tried a few different options and noticed that when she switched to gluten free the night waking started reducing immediately and have now stopped altogether.

she thinks now looking back he may have been getting tummy cramps but couldn't verbalise. It may be something worth looking into.

fits

Big hug op. Lack of sleep is extremely difficult.

im not sure if its of any help but the meltdowns can improve. We had a lot around that age but very few now.

Meltdowns are different to tanyrums the child really can’t help it

id agree to seek other parents out. It was a huge help to me.

also try and see if respite might be an option.

lightspeed

https://www.boards.ie/discussion/comment/121903251#Comment_121903251

Hi

Any idea how respite works?

As challenging as it all is now, I'm concerned even more for the future.

What happens as she is too big for her cot?

When she outgrown her nappy but not able to be potty trained like other kids?

Is respite funded or part funded by HSE or other government body?

Are costs crazy high?

I have a feeling she would be too young for respite right now especially since not yet officially diagnosed but going on the assumption that she is high on the scale of autism, I want to at least know all options of the road ahead.

Be right back

Generally respite doesn't start until they have begun school. They will have to have a certain diagnosis. No reason why she couldn't be toilet trained. It might take longer than normal but I know several non verbal children and teenagers who were successfully trained to use the toilet.

Redniallers

HSE supplies all the nappies and they are delivered by courier to your home.

suvigirl

https://www.boards.ie/discussion/comment/121903649#Comment_121903649

My godson was diagnosed when he was 4. We all knew before that, he was autistic.

No reason your child cannot be toilet trained. There was no issues with my godson when it came to school, just needed a sna. He is in secondary school now.

bobcatboo123

Have you applied for the assessment of need op? It might be quicker than waiting on the regular CDNT waitlist. She really needs a diagnosis to access a special class or special school. Early intervention classes for children will take kids from 3 years.

Alexus25

https://www.boards.ie/discussion/comment/121903980#Comment_121903980

Highly recommend trying to get your child on the waiting list for this now as sadly it could be years til she's seen. There was an rte episode on its problematic process, best of luck OP

fits

https://www.boards.ie/discussion/comment/121903649#Comment_121903649

I’m not sure how respite works but I do think you could benefit from talking to other parents in your area.

my boy was diagnosed with a genetic condition when he was two and all those thoughts went through my head as well. the realisation of what we could be dealing with - we had no idea what would be ahead

He is 7 and He can use the toilet now and he won’t stop talking! He’s been at home with me after surgery for the last two weeks and he knows how to make beans on toast.

We don’t know your child but it’s hard to tell what she will or won’t do at this age. All you can do is support her

as for the night waking - I had to stay with my boy after he woke the first time until he was four or so. He slept in a double bed and I joined him after the first wake up. Again don’t know what will work in your situation but don’t be afraid to eschew traditional arrangements so that everyone gets some sleep.

bobcatboo123

Also OP; applyfor the domiciliary care allowance. If you get this, you may be able to use it to access a private diagnostic assessment quicker.

lightspeed

Thanks I'm fairly sure she has been referred for assessment of needs already. I think she was referred to an occupational therapist in addition to CDNT and we got a letter saying this was rejected as given her needs the CDNT would be better suited.

She is walking, running etc and surprisingly tall for her age as we are both under 5 ft 5 and she is a very poor eater so not sure an OT would even be of any benefit to her.

glen123

Hi OP, firstly she is only 2 and things will get better but she needs help.

I would seriously consider private options as it may take years to get anything from the public system and what you are going to get (a few sessions of this and that isn't enough). 

There is a group on Facebook called DCA Warriors - they are excellent for advice on how to apply for Domiciliary allowance (non means tested monthly payment, currently 340pm) - that should help with costs. Ideally you need a diagnosis to apply but not necessarily. It's not easy to get so the group will help with advice to get the paperwork right. They will also help with information how to go about private assessment or how to go about getting something out of the public system if you are ready for a fight.

Once you have the diagnosis, you may be able to apply for an extra Tax credit as well as refund of the same going back to the DOB of the child (going back max 4 or 5 years I think) - Incapacitated Child Tax Credit, currently it's 3,500 per year and also will help with private costs.

When it comes to therapies, early intervention is key.

VHI has a plan for children called PMI 2410, 36eur per month. You do not need to be insured yourself with them - you can ring them and ask for a policy for a child only and give them the plan name. It instantly gives you 75% back on Speech and Language, Occupational therapy and many other things and annual limit is very high there (you are unlikely to hit it). There is no waiting period on daily expenses! Please note that private specialists have waiting times now as well so the sooner you get in touch with them the better. VHI may cover part of the ASD diagnosis fees as well (you need to check with them though)

In pre school they should be able to apply for an assistant, it's called AIMs (no need for diagnosis for that but they should know this themselves) as well as you can apply for extra 3rd year in pre school, if necessary.

For a place in the ASD unit in school you would need a diagnosis, I am pretty sure, and a report so you need to be aware of this to make sure you are not stuck in the system waiting for diagnosis for years.

As I said, the group mentioned above would be able to help with all of the above if you need more information. Look for a local group as well where parents of autistic kids meet up - they would have a lot of advice when it comes to sleeping, toilet training, etc.

Things will get better, OP (I am speaking from experience as my lady was exactly like yours when she was 3. She is 8 now and there isn't even comparison to then and now) . Good luck!