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Child Item

Now Ye're Talking - to a parent of a child with autism

Boards.ie: Niamh

Our next guest is a parent to a 4 year old child who has autism. The current rate of autism in Ireland is 1 in 100 so most of us probably know at least one person affected by it and yet a lot of people don't know that much about it. This is your chance to ask some questions about it and learn more. I'm a parent to a child with autism, AMA will be answering questions based on their own experiences as a parent thus far.

Thanks all

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RainyDay wrote: »

Does this happen much, do you know? I've heard it discussed, with tricks like keeping the kids up all night before the assessment.

I can understand the difficulties for parents, this really seems abusive, and even fraudulent.

Yes it does and it's sad to see I personally have seen it myself . I was previously part of a support network for mums and I had to leave as it was upsetting me so much . Also it's harder then for all the kids with genuine issues as the services are blocked up .

I have a child who is 6 and Autistic. Attends Autism spectrum unit for primary school.

Here is my take on the DCA,

When we first applied we were denied. We had to appeal.

Because of the way the department just put a line through applications it is necessary to present the worst case scenarios for your child.

Any child with Autism,with a diagnosis of Autism, certainly needs more care and attention than that of a child of the same age without Autism. Any parent of an Autistic child will tell you this.

I have met parents in some of these groups and the sad thing for me is that it's like a competition to see who's child is more severe.

It's pathetic because Autism is a spectrum and no two children are the same. What my child might be severe in (speech,meltdowns,biting,sleep) your child me be perfect at. And what your child is severe in my child could be perfect.

The DCA is pittance. It barely covers the damage in my house caused by youngsters meltdowns.

I'm parent to a child with autism, AMA

So the hse, well I think it's down to numbers and continuity. Kids with asd can take a long while feeling comfortable with strangers and while a lovely new slt has joined our early intervention team (eit) when I asked her if she was permanent she said she wasn't and was going elsewhere in 6 weeks. So we are bdbk to square one for the next block..,

We were lucky timing wise as he was diagnosed quickly. 6 months later and the county psychologist was off for ten months and not replaced which meant no kids were diagnosed in the entire county got almost a year!!! A year of early intervention lost is huge for any child.

As pointed about above, it's incredibly difficult for genuine parents to get help eg your child is approved for home tuition but they attend an ecce Creche. Even if your home tutor goes into the Creche with the child, the dept reduce your home tuition hours accordingly and just pay the ecce fee. Therefore parents have to lie and say their child isn't in Creche otherwise the child will have no support while at Creche.

I don't want this to turn into a government bashing thread as that's old news. Would love to hear from others what therapies they have used.

We do listening therapy to aid sensitivity, aba, private ot, private slt, gemiini and he is on a gluten and casein free diet. If anyone has any questions, please feel free.

No questions just wanted to commend all the parents especially the mothers who find themselves on this journey with their child

Regarding the state its an absolute disgrace the way children are treated,its so short sighted denying them fast help at an early age because it will only end up costing the state far more in the future

Oh and fish oils work a treat:D

I'm parent to a child with autism, AMA

SEPT 23 1989 wrote: »

No questions just wanted to commend all the parents especially the mothers who find themselves on this journey with their child

Regarding the state its an absolute disgrace the way children are treated,its so short sighted denying them fast help at an early age because it will only end up costing the state far more in the future

Oh and fish oils work a treat:D

Thank you! Have recently started the fish oil. Saw a 'Ted Talks' from a neuroscientist and I contacted her about asd and she said fish oil! He will be bathing in it lol

I agree it's so short sighted. I know several families in nearby counties who are being told to wait and see. The parents brought the children up to 8/9 months ago and are still being told to 'wait and see' when the children clearly have asd.

I'm parent to a child with autism, AMA wrote: »

Thank you! Have recently started the fish oil. Saw a 'Ted Talks' from a neuroscientist and I contacted her about asd and she said fish oil! He will be bathing in it lol

I agree it's so short sighted. I know several families in nearby counties who are being told to wait and see. The parents brought the children up to 8/9 months ago and are still being told to 'wait and see' when the children clearly have asd.

What sort of fish oil do you give your son OP? I give omega 3 tablets which is richer in DHA than EPA as I understand it is more important in under 5's.

I'm parent to a child with autism, AMA wrote: »

Thank you! Have recently started the fish oil. Saw a 'Ted Talks' from a neuroscientist and I contacted her about asd and she said fish oil! He will be bathing in it lol

I agree it's so short sighted. I know several families in nearby counties who are being told to wait and see. The parents brought the children up to 8/9 months ago and are still being told to 'wait and see' when the children clearly have asd.

I witnessed drastic improvements with oils so fingers crossed they work for you its such a simple thing:)

as with everything else money talks so i would urge parents to beg borrow and steal and do everything privately do not wait for the state early intervention is paramount

How do you find the GF/CF diet? We tried the gluten free and realllly struggled. Do you find a big difference in your son since starting those diets?

I'm parent to a child with autism, AMA

Lucyfur wrote: »

How do you find the GF/CF diet? We tried the gluten free and realllly struggled. Do you find a big difference in your son since starting those diets?

He was always dairy free and would have been on different bread anyway due to that so it wasn't a huge change for him. I didn't notice any huge change but he's sick a lot less. I suppose he never had big meltdowns etc anyway

We did the stool and urine biomed tests and he was riddled with yeast which causes its own issues. He's on a variety of supplements to help heal his gut and I think it's going great. Those antibiotics really made a mess of his gut. Hope all this helps heal

I'm parent to a child with autism, AMA

yellow hen wrote: »

What sort of fish oil do you give your son OP? I give omega 3 tablets which is richer in DHA than EPA as I understand it is more important in under 5's.

Ive just started Nordic naturals dha. Which do you recommend?

I'm parent to a child with autism, AMA

SEPT 23 1989 wrote: »

I witnessed drastic improvements with oils so fingers crossed they work for you its such a simple thing:)

as with everything else money talks so i would urge parents to beg borrow and steal and do everything privately do not wait for the state early intervention is paramount

Absolutely. We got the incapacitated child tax credit refund and it was used solely for his therapy prior to the dept funding kicking in. The DCA is used for Slt every month. It has to be done. We've taken a mortgage moratorium so I can afford to stay home on carers leave

Which oils were used in this instance?

I'm parent to a child with autism, AMA wrote: »

He was always dairy free and would have been on different bread anyway due to that so it wasn't a huge change for him. I didn't notice any huge change but he's sick a lot less. I suppose he never had big meltdowns etc anyway

We did the stool and urine biomed tests and he was riddled with yeast which causes its own issues. He's on a variety of supplements to help heal his gut and I think it's going great. Those antibiotics really made a mess of his gut. Hope all this helps heal

Do you have him on zinc and magnesium supplements? I found a massive difference after my son started on them. Within 3 months he was much calmer and more focused.

Is the yeast issue all part of his autism, do you think?

I'm parent to a child with autism, AMA

Lucyfur wrote: »

How do you find the GF/CF diet? We tried the gluten free and realllly struggled. Do you find a big difference in your son since starting those diets?

Why did you struggle?

I'm parent to a child with autism, AMA

Lucyfur wrote: »

Do you have him on zinc and magnesium supplements? I found a massive difference after my son started on them. Within 3 months he was much calmer and more focused.

Is the yeast issue all part of his autism, do you think?

The magnesium was making his tummy I'll so he gets Epsom salts in bath. He's on vitamin d, grapefruit seed extract, bio ray (shine) probiotic drops and I need to start vitamin b. He has a very sensitive tummy so I have to take it v v slow. He really needs Q10 but I haven't sourced an oil yet. Can't get tablets into him

I'm parent to a child with autism, AMA wrote: »

Why did you struggle?

Because all he would eat was cheerios. Out of the box. NEVER from a bowl. For two loooooong years

He had massive tactile issues and had to touch everything. If he didn't like the feel, it got flung against the wall.

Amazing now though. He'll eat most things!

I'm parent to a child with autism, AMA

Lucyfur wrote: »

Because all he would eat was cheerios. Out of the box. NEVER from a bowl. For two loooooong years He had massive tactile issues and had to touch everything. If he didn't like the feel, it got flung against the wall.

Amazing now though. He'll eat most things!

Wow that's a fantastic achievement. How did you get the supplements into him?

I'm parent to a child with autism, AMA

Lucyfur wrote: »

Is the yeast issue all part of his autism, do you think?

I think it's down to all the antibiotics he had as a baby. The symptoms of yeast are incredible. We used grapefruit seed extract for a long while and now have the new probiotic.

I'm parent to a child with autism, AMA wrote: »

Wow that's a fantastic achievement. How did you get the supplements into him?

They came later. We did a fairly intensive therapy with OT to break the barriers with the tactile issues. When he started eating other foods, I introduced liquid vitamins, which were a big no-no. Not off a spoon, not hidden in food or drink...so I just chanced capsules and he took them with no problems at all. I really think the zinc, magnesuim and fish oils really helped him.

How do you find the listening program? We didn't have great success with it but a friends child had an amazing response to it.

Do you use the weighted gear at all? I knew nothing about it til my son was 8 or so. I got the weighted ball blanket for his bed and he loved it

He's outgrown it now so it's gone to a new home. They're so expensive!

I'm parent to a child with autism, AMA

I find the listening good for his sensitivity. We had stopped it for s while to give him a break and the kids crying in creche were driving him mad. Started it again and the next day there was a child crying next to him and not a bother.

We got a weighted hoody but he hates it. It was €130

Got the body bag and he hated that too ...

Just started the base layer sondico tops this week and so far so good. He has extra blankets on bed in lieu of a weighted blanket. I would get anything to get sleep. Does your man sleep?

Think we are getting eating issues now as I've been hiding the supplements in juice / milk

He now doesn't trust what food i give him but will take it for others. It's so hard.

He slept a grand total of an hour a night til he was 5. No daytime naps either. He's 13 now and still isn't a great sleeper but much better than he was. Last night he was still awake at 3am but the night before that he was asleep at 1am. He just reads in bed til he sleeps. It's a welcome change to younger him who used to just bounce off the wall for the night!

I'm parent to a child with autism, AMA

Lucyfur wrote: »

He slept a grand total of an hour a night til he was 5. No daytime naps either. He's 13 now and still isn't a great sleeper but much better than he was. Last night he was still awake at 3am but the night before that he was asleep at 1am. He just reads in bed til he sleeps. It's a welcome change to younger him who used to just bounce off the wall for the night!

Wow! You must have a halo. Did you every try melatonin? We are giving it a go even though he goes to sleep easily but wakes during night...

I'm parent to a child with autism, AMA wrote: »

Wow! You must have a halo. Did you every try melatonin? We are giving it a go even though he goes to sleep easily but wakes during night...

Not at all, you do what you need to do, as you know yourself!

No. I was so dead against any medication. If I could go back I'd give myself such a boot up the backside! I was quite young and terrified of medicating him. Hindsight is a great thing :rolleyes:

I'm parent to a child with autism, AMA

Lucyfur wrote: »

Not at all, you do what you need to do, as you know yourself!

No. I was so dead against any medication. If I could go back I'd give myself such a boot up the backside! I was quite young and terrified of medicating him. Hindsight is a great thing :rolleyes:

I refused it for a long time. Will have him off it as soon as possible.

I'm just going to share some of our journey here. I'm parent to 2 children with autism, boy 3.5 years, girl 2.5 years. Boy-definite sensory issues from birth -autism crossed my mind the day he was born. Has many food issues, loved to jump and spin from a very young age, would sit with his books for hours aged 7/8 months. I knew something was wrong but every professional I spoke to told me all was normal. Finally private diagnosis at 24 months. The day he was diagnosed, I knew in my heart my little girl also had autism. Finally booked a private assessment for her when she was 20months.
I have moved in this time so have has dealings with 2hse services. First refused to accept private diagnosis and also refused another psychological assessment under AON-left in limbo. New area accept private diagnosis. Neither child has received any direct intervention from the hse to date.
So paying for private intervention. I view myself as my children's case manager And as such need to keep on top of all their therapies and interventions and constantly monitor their behaviour. We need to be consistent in every interaction we have with them.
My hope/goal is that they will both be independent and contributing to society. We have a long hard road ahead, but we are already almost 2 years down that road, and I hope it will get easier with time.

I'm parent to a child with autism, AMA

That's a good point about the private diagnosis being accepted in one county and not the next. So the diagnose could be acceptable for home tuition in Wicklow but not Kildare. It's mind blowing.

Pablodreamsofnew

Hi and thanks for doing this do. I have so many questions. We're just at the beginning of our journey and quite overwhelmed and confused by it all. Our son is 3 years old and he has severe speech delay. No sentences and just a few words. Under ten words and not all of them are clear. We were put into the system 6 months ago and we have his needs of assessments early March.

I guess I would just like to know, what happens there? If they decided he does need early intervention does that mean he gets it straight away or are we going to be waiting for months?

The main issue is speech but he has other behaviours problems too.
We aren't sure if it's ADHD or Autism and are just living for March at this stage.

I'm parent to a child with autism, AMA

MrsYelnekoff wrote: »

Hi and thanks for doing this do. I have so many questions. We're just at the beginning of our journey and quite overwhelmed and confused by it all. Our son is 3 years old and he has severe speech delay. No sentences and just a few words. Under ten words and not all of them are clear. We were put into the system 6 months ago and we have his needs of assessments early March.

I guess I would just like to know, what happens there? If they decided he does need early intervention does that mean he gets it straight away or are we going to be waiting for months?

The main issue is speech but he has other behaviours problems too.
We aren't sure if it's ADHD or Autism and are just living for March at this stage.

Hi under the legislation you should have met the assessment of needs officer within 3 months of submitting the form. Are you just meeting the officer or the professionals who will be assessing your child?

At this stage I wouldn't be waiting for them? You might be months waiting for anything to happen even after meeting the assessment of needs officer. If it were me I would go private. First thing you need to do is contact your local seno and see if they accept private diagnosis'. You will find their details here.

http://ncse.ie/seno-contact-list
I'll pm you contact details for the psychologist we used. It costs €350. If your seno doesn't accept the private diagnosis we will go to plan B. Check that first. There is no point waiting for the HSE.

MrsYelnekoff wrote: »

I guess I would just like to know, what happens there? If they decided he does need early intervention does that mean he gets it straight away or are we going to be waiting for months?

This is what SHOULD happen

http://www.hse.ie/eng/services/list/4/disability/Disability_Assessment/

I'm an adult with Aspergers. I just wanted to say thank you for posting all this wonderful information. I wasn't diagnosed when younger so had alot of difficulties growing up. It's really heart warming and relieving to see such a wonderfully better educated and awareness in so many posters. Knowing future generations are getting more (though not enough) support is wonderfully comforting.
Really great job from all of you.

I'm parent to a child with autism, AMA

manonboard wrote: »

I'm an adult with Aspergers. I just wanted to say thank you for posting all this wonderful information. I wasn't diagnosed when younger so had alot of difficulties growing up. It's really heart warming and relieving to see such a wonderfully better educated and awareness in so many posters. Knowing future generations are getting more (though not enough) support is wonderfully comforting.
Really great job from all of you.

Thank you

:)

Can I ask you something and if you don't wish to reply then there's no problem.

It's early days for us yet obviously but I don't want the word autism to be the word most heard by my son. Do you think kids should be told they have autism? I don't like to think he is different as all kids are different to each other. Do you think telling him he has autism when older will reinforce a 'difference' in his mind or will it help explain how he finds somethings harder.

I want him to understand but not to be weighed down by a label