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

Boards.ie: Niamh · 19-02-2016 4:19pm #1

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

Lady is a tramp · 19-02-2016 5:29pm

Ooooh very interesting!

I'll probably have a few questions on this, but I'll kick it off with a controversial one ... as a parent, what's your view on the supposed link between autism and vaccines? Also, what's your experience with other parents of children with autism, is it an issue/concern for many of them? Or do most see it as a load of bollox!

Redser87 · 19-02-2016 5:33pm

Is your child already in school? Would you prefer a mainstream school or a school for children with autism? Does it bother you when people don't use child-first language?

misstearheus · 19-02-2016 5:39pm

What is the "Ketchup joke?!". Often hear it being said that anyone with kids with Autism will understand Ketchup! What does that mean?!

eviltwin · 19-02-2016 5:39pm

As the mother of two kids with autism I just want to say well done on doing the AAA. Hopefully it will clear up some of the myths about the condition and answer the questions people have but never feel comfortable asking.

Where does your child lie on the spectrum first of all? How severe are they?

How do people respond to your child's condition? Most people, sadly, are quite fearful of it in my experience, they don't know how to deal with it.

How did you find the whole pre and post diagnosis journey and what are services like in your area.

Hollister11 · 19-02-2016 5:41pm

Do you agree with giving children with autism and adhd medication ?

I'm personally against it.

Lady is a tramp · 19-02-2016 5:49pm

I know that there is a wealth of information online about the signs and symptoms of autism, but with your own child, what were the first signs you noticed and when? Was it picked up by you or a medical professional?

Do you find many parents are in denial when it comes to spotting the signs in their own child? (My own son exhibits quite a few symptoms; however his dad is very much in denial about it and I'm concerned that this could delay diagnosis/treatment, I know early intervention is very important.)

Just to clarify something ... is Aspergers just a highly functioning form of autism, or something completely different?

I'm parent to a child with autism, AMA · 19-02-2016 6:14pm

Lady is a tramp wrote: »

Ooooh very interesting!

I'll probably have a few questions on this, but I'll kick it off with a controversial one ... as a parent, what's your view on the supposed link between autism and vaccines? Also, what's your experience with other parents of children with autism, is it an issue/concern for many of them? Or do most see it as a load of bollox!

Hi Lady is a Tramp,

Ill look forward to your questions and will answer any I can. Obviously, as my child is only 4, I wouldn't have the experience that parents of older asd kids would have.

Well you started with a doozy of a question - autism and vaccines... I suppose where I am right now is that I'm reading about it and trying to make an informed decision. My child was vaccinated so the horse has bolted in that sense and I didn't notice any change in him due to the vaccines. However, I know a number of intelligent, rational and sensible parents who saw immediate changes in their children after vaccines.

I guess where I am right now is that I don't think vaccines suit every child just like children and adults can have reactions to any medication. The number of vaccines now being to administered to young children in the USA for example scares the life out of me (see attached). So I suppose I think they should be tailored to each child rather than just pumped into the entire population.

I don't tend to ask other parents about the vaccine issue as its a very personal view.

I'm parent to a child with autism, AMA · 19-02-2016 6:17pm

Redser87 wrote: »

Is your child already in school? Would you prefer a mainstream school or a school for children with autism? Does it bother you when people don't use child-first language?

Nope my child has a home tutor for 20 hours per week and she also attends crèche with him for 2 morning per week. I don't intend sending him to school until September 2017. Our home tuition subsidy runs out in July 16 so we will have to fund it ourselves next year as he has been offered a place in an asd preschool unit which we wont take. I want to give him the best chance to start in a mainstream class so I think another year of one to one tuition will give him the best chance.

No it doesn't bother me.

I'm parent to a child with autism, AMA · 19-02-2016 6:18pm

misstearheus wrote: »

What is the "Ketchup joke?!". Often hear it being said that anyone with kids with Autism will understand Ketchup! What does that mean?!

Oh I cant give away that secret

TBH I've no idea what the ketchup joke is. Does that mean I need to ketchup?

yellow hen · 19-02-2016 6:22pm

What age was your child diagnosed and, in hindsight, is there anything you wish you'd done earlier/differently?

I'm parent to a child with autism, AMA · 19-02-2016 6:26pm

eviltwin wrote: »

As the mother of two kids with autism I just want to say well done on doing the AAA. Hopefully it will clear up some of the myths about the condition and answer the questions people have but never feel comfortable asking.

Where does your child lie on the spectrum first of all? How severe are they?

How do people respond to your child's condition? Most people, sadly, are quite fearful of it in my experience, they don't know how to deal with it.

How did you find the whole pre and post diagnosis journey and what are services like in your area.

Hi eviltwin,

You might need to help me out with some responses so

Where does he lie on the spectrum.... The psychologist refused to say mild / severe etc as he was just gone 2 when he was diagnosed. He was initially privately diagnosed with PDD NOS as he didn't exhibit sensory / routine issues and then full ASD by the HSE.

He has severe speech delay but his understanding is improving all the time. His fine and gross motor skills are age appropriate and he learns quickly. He doesn't have routine issues still but he does have very sensitive ears which clearly is an issue for him in crèche due to noise levels. He's also toilet trained. To answer your question, I would consider his speech delay quite severe but everything else to be mild.

I haven't had one negative experience yet TG. He's invite to parties etc and gets lots of hugs from friends and family etc. I suppose he's still quite young and if he gets upset, mainly due to noise at events, then its not that noticeable due to his age.

I found the pre and post diagnosis journey to be absolute and total mental and emotional torture. My heart breaks when I hear of other parents having suspicions and ultimately getting a diagnosis because it was the hardest things I've had to deal with in my life. Part of the reason I wanted to do this was to encourage parents or family members who have concerns to ask questions here. Hopefully other parents like you will chime in to offer your experience where appropriate.

We are lucky where we are in that the services are very good and he gets all his support. In saying that, we are paying for speech and occupational therapy privately as even though the service is good compared to other areas in the country, its not enough.

I'm parent to a child with autism, AMA · 19-02-2016 6:30pm

Hollister11 wrote: »

Do you agree with giving children with autism and adhd medication ?

I'm personally against it.

I don't really agree with giving kids medication full stop but I haven't lived with a child with adhd so I cant really comment.

I do everything I can to avoid giving my child medication as his gut is in a shambles after being prescribed 15 antibiotics in 2 years by GP's. I find medicine addresses the symptom and not the cause and I'm trying to improve my child's health through diet and natural supplements rather than resorting to a prescription each time.

I have a family member who has a child with adhd and who is on medication for it. I know it wasn't an easy decision for them but it seems to have worked and their (his and theirs) quality of life has improved.

Ruu · 19-02-2016 6:33pm

Is there much support in Ireland with regard to materials and other resources for families with children on the spectrum?

I'm parent to a child with autism, AMA · 19-02-2016 6:37pm

Lady is a tramp wrote: »

I know that there is a wealth of information online about the signs and symptoms of autism, but with your own child, what were the first signs you noticed and when? Was it picked up by you or a medical professional?

Do you find many parents are in denial when it comes to spotting the signs in their own child? (My own son exhibits quite a few symptoms; however his dad is very much in denial about it and I'm concerned that this could delay diagnosis/treatment, I know early intervention is very important.)

Just to clarify something ... is Aspergers just a highly functioning form of autism, or something completely different?

Well I was pretty paranoid about it as my cousin has a son with asd. When I was pregnant I was sure I was having a girl and when I found out it was a boy my first thought was asd.....

Because of these concerns, I was very obsessed with milestones and noted down each of them missed or hit. This was of great use to me when it came to meeting the professionals. His speech wasn't coming on, he ran up and down and up and down all day, he never pointed, he had bad gastrointestinal issues (very common with ASD) and didn't sleep. I flagged with 4 GP's who told me I was wrong and then I insisted at 20 months that the public health nurse refer me to the speech therapist. They saw him at 25 months and knew straight away.

He had no play skills, couldn't copy or mimic and didn't have joint attention.

He was taken on by the early intervention team at 26 months and privately diagnosed at 27 months. His home tuition started at 28 months.

I find a lot of people in denial about the signs sadly. I've had parents approach me for a chat and I give them the info and tell them what we did and 6 /12 months later they still have done nothing.

Don't get me wrong - I don't want this for my child but I know early intervention is his only hope for a great life. His wellbeing is more important than my pride.

I cant tell you exactly what Aspbergers is but its my understanding that its high functioning as speech comes more easily but the social skills are still impaired.

I'm parent to a child with autism, AMA · 19-02-2016 6:40pm

Ruu wrote: »

Is there much support in Ireland with regard to materials and other resources for families with children on the spectrum?

I'm not sure what you are asking exactly?

I tend to use Pinterest and Facebook for materials such as printables etc and they are mainly from American companies. I find the occupation therapy items e.g. modified ear phones for listening therapy are extortionate compared to the prices in the USA and UK. Stuff like weighted vests etc are way dearer too. ASD is a total money racket. It's incredibly expensive.

I think my son is lucky to have been diagnosed now as there is so much stuff online for teaching kids with ASD. Is that what you meant?

I'm parent to a child with autism, AMA · 19-02-2016 6:57pm

yellow hen wrote: »

What age was your child diagnosed and, in hindsight, is there anything you wish you'd done earlier/differently?

He was 27 months when privately diagnosed and then 31 months when diagnosed by the HSE.

I wish I hadn't listened to people telling me he's a slow talker because he's a boy and 'that's what boys do'. I should have trusted my gut more and not paid any heed to their 'first time mother' attitude.

I guess there is nothing I wish I had done differently other than having gone to the speech therapist earlier.

Oh actually I do wish I hadn't allow him get so many antibiotics. I do think I was neglectful by just accepting prescription after prescription rather than looking at the cause.

Lady is a tramp · 19-02-2016 8:22pm

I'm just curious as to whether he's your only child? (The reason I ask is that I'm guessing parents of children with ASD must have a tough time coping for other children as well, with all of the work and appointments etc involved with ASD.)

Also friend of mine has a son who has just been diagnosed with ASD, he's close in age to my son and his behaviour is very similar to my son's, which is what led me to question whether my own son may have similar issue. One thing I found surprising is that his son is quite cuddly and happy and affectionate - I guess I don't know much about children on the spectrum, I had somehow gotten the impression that most children with autism are withdrawn and show little affection. Is that a common misconception, or is there some truth to it? (I hope that question isn't offensive to you in any way!

I'm just trying to get a better understanding of the whole condition!)

eviltwin · 19-02-2016 8:35pm

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

I found the pre and post diagnosis journey to be absolute and total mental and emotional torture. My heart breaks when I hear of other parents having suspicions and ultimately getting a diagnosis because it was the hardest things I've had to deal with in my life. Part of the reason I wanted to do this was to encourage parents or family members who have concerns to ask questions here. Hopefully other parents like you will chime in to offer your experience where appropriate.

Yeah, I completely get this. We had the same thing. For something so common it's shocking how little help and support there can be during the process. Everything is so much more difficult than it needs to be.

I'm parent to a child with autism, AMA · 19-02-2016 8:41pm

Lady is a tramp wrote: »

I'm just curious as to whether he's your only child? (The reason I ask is that I'm guessing parents of children with ASD must have a tough time coping for other children as well, with all of the work and appointments etc involved with ASD.)

Also friend of mine has a son who has just been diagnosed with ASD, he's close in age to my son and his behaviour is very similar to my son's, which is what led me to question whether my own son may have similar issue.

One thing I found surprising is that his son is quite cuddly and happy and affectionate - I guess I don't know much about children on the spectrum, I had somehow gotten the impression that most children with autism are withdrawn and show little affection. Is that a common misconception, or is there some truth to it? (I hope that question isn't offensive to you in any way! I'm just trying to get a better understanding of the whole condition!)

He is our only child but due to other circumstances. I've had to take carers leave from work to ensure he got to all his appointments. I'm happy he has so many appointments but its still stressful to deal with the constant analysis of your child not to mention the expense (and lack of income!)

All kids on the spectrum are totally different. My fella is very cuddly too - he likes the deep pressure.... The kids can be withdrawn especially if they have trouble with their communication and social integration. I found with the early intervention that he is pretty much always clued in whether or not he wants to be social

Maybe start by filling this out to see if you should take it further.

https://www.m-chat.org/index.php

TBH I think its always better to be safe than sorry and if you have any concern, get the child assessed and go with your gut oh and you aren't offending me in the slightest

celligraphy · 19-02-2016 8:50pm

Four words... Thomas the tank engine does your kid love it ?

I'm parent to a child with autism, AMA · 19-02-2016 8:50pm

eviltwin wrote: »

Yeah, I completely get this. We had the same thing. For something so common it's shocking how little help and support there can be during the process. Everything is so much more difficult than it needs to be.

Absolutely. I relied on total strangers and my own research. I found it so scary as I never knew if we were making the best choices for him.

I'm parent to a child with autism, AMA · 19-02-2016 8:52pm

celligraphy wrote: »

Four words... Thomas the tank engine does your kid love it ?

Lol no. He is addicted to Bubble Guppies and hates Peppa Pig (due to the snorting).

yellow hen · 19-02-2016 9:13pm

celligraphy wrote: »

Four words... Thomas the tank engine does your kid love it ?

Is that not a bit of a leap???

yellow hen · 19-02-2016 9:15pm

Thank you for your honesty here OP. We're just embarking on the assessment and it's an emotional rollercoaster. We're initially starting private OT and SPD in the hope that it's just a sensory disorder and speech delay but in my heart I don't think it is.

A_Sober_Paddy · 19-02-2016 9:18pm

Lady is a tramp wrote: »

Ooooh very interesting!

I'll probably have a few questions on this, but I'll kick it off with a controversial one ... as a parent, what's your view on the supposed link between autism and vaccines? Also, what's your experience with other parents of children with autism, is it an issue/concern for many of them? Or do most see it as a load of bollox!

There is absolutely no link between vaccines and autism. The person who published the paper in the 90's was found guilty of fabricating it.
https://en.m.wikipedia.org/wiki/MMR_vaccine_controversy

Lady is a tramp · 19-02-2016 9:28pm

A_Sober_Paddy wrote: »

There is absolutely no link between vaccines and autism. The person who published the paper in the 90's was found guilty of fabricating it.
https://en.m.wikipedia.org/wiki/MMR_vaccine_controversy

I'd be fully in agreement with you the lack of evidence of any link, but I don't think there's any point in dragging this particular thread off-topic ... maybe the Parenting or Health Sciences forum would be better for a debate on the issue, if you wanted to start a thread there? I just asked as it's a common topic amongst parents of autistic children, and I was interested in this particular mother's opinion.

It's an AMA thread, not a general debate/discussion thread.

Steven81 · 19-02-2016 9:34pm

http://www.dailymail.co.uk/health/article-470672/How-Thomas-Tank-Engine-puts-autistic-children-right-track.html

Our 3.5 girl loves thomas, she knows all the characters too.

A_Sober_Paddy · 19-02-2016 9:35pm

Lady is a tramp wrote: »

I'd be fully in agreement with you the lack of evidence of any link, but I don't think there's any point in dragging this particular thread off-topic ... maybe the Parenting or Health Sciences forum would be better for a debate on the issue, if you wanted to start a thread there? I just asked as it's a common topic amongst parents of autistic children, and I was interested in this particular mother's opinion.

It's an AMA thread, not a general debate/discussion thread.

I understand, but was responding to your post

I'm parent to a child with autism, AMA · 19-02-2016 9:39pm

I personally wouldn't be relying on Wikipedia for information on vaccinating my child....

I find this article interesting.

http://thinkingmomsrevolution.com/the-thompson-transcripts-shocking-revelations-by-the-cdc-whistleblower/

It's not just the actual vaccine that needs to be assessed but also the timing and the fillers used (mercury etc)

As mentioned above, this isn't the place to be debating vaccinations but it's definitely something parents should research before embarking on it.

smr85 · 19-02-2016 10:14pm

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

Nope my child has a home tutor for 20 hours per week and she also attends crèche with him for 2 morning per week. I don't intend sending him to school until September 2017. Our home tuition subsidy runs out in July 16 so we will have to fund it ourselves next year as he has been offered a place in an asd preschool unit which we wont take. I want to give him the best chance to start in a mainstream class so I think another year of one to one tuition will give him the best chance.

No it doesn't bother me.

Can I ask why you are refusing the place in the ASD preschool?
Is it an early intervention unit attached to a mainstream school or is it a stand alone preschool? Have you discussed this decision with other parents or professionals who have experience of early intervention and integration?

For full disclosure I work with children with ASD so I am curious as to how and why you have made the decision.

I'm parent to a child with autism, AMA · 19-02-2016 10:38pm

No bother but I am very conscious that many other parents will have kids in a preschool setting and this is just down to my own personal experience of this one unit. Its an early intervention unit attached to a mainstream school.

First of all I did work experience there so I got to see how the day was structured and realised that my child does more in 1/2 hour with his home tutor than he would in the entire day there. I think he would be very bored. The class is banded by age and not by ability. On top of that, I found this particular teacher very disinterested in the children and in integrating the children into mainstream where appropriate.

The children's breaks in sensory room, play ground etc were used by the SNA's as a break rather than opportunity to work on social skills and I just felt overall that there was a lack of energy around their education. I would prefer to keep him in a good Montessori and get some home tuition in afternoon and try for sna with mainstream when he is older.

byhookorbycrook · 19-02-2016 10:53pm

Does the mainstream also have a unit or is it just the pre school and if there is a unit is there a form of dual enrollment?

Gloomtastic! · 19-02-2016 10:56pm

Have you ever tried interacting with your son through a puppet? As a childrens entertainer, I occasionally work with autistic kids, at all levels of the spectrum, and have seen some very positive interactions when the puppet show is on.
Here's a link to the one's we use http://www.puppetville.com/store-categories-Full-Body-28-Characters_2215150.html

Good luck to you all!

I'm parent to a child with autism, AMA · 19-02-2016 10:59pm

byhookorbycrook wrote: »

Does the mainstream also have a unit or is it just the pre school and if there is a unit is there a form of dual enrollment?

I'm not sure I understand what you mean? It's in a mainstream school and once you are in the preschool you don't need to leave or re-enrol

I'm parent to a child with autism, AMA · 19-02-2016 10:59pm

Gloomtastic! wrote: »

Have you ever tried interacting with your son through a puppet? As a childrens entertainer, I occasionally work with autistic kids, at all levels of the spectrum, and have seen some very positive interactions when the puppet show is on.
Here's a link to the one's we use http://www.puppetville.com/store-categories-Full-Body-28-Characters_2215150.html

Good luck to you all!

Only with finger puppets and he has shown no interest yet! Thank you for that

Gloomtastic! · 19-02-2016 11:06pm

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

Only with finger puppets and he has shown no interest yet! Thank you for that

We use full size puppets (28"). Size might make a difference. :rolleyes:;)

byhookorbycrook · 19-02-2016 11:18pm

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

I'm not sure I understand what you mean? It's in a mainstream school and once you are in the preschool you don't need to leave or re-enrol

Sorry, some mainstream schools have ASD units attached (not pre schools) and the child spends time in the unit and mainstream room, does that make sense?

I'm parent to a child with autism, AMA · 19-02-2016 11:23pm

byhookorbycrook wrote: »

Sorry, some mainstream schools have ASD units attached (not pre schools) and the child spends time in the unit and mainstream room, does that make sense?

Yeah this is the same set up. It's a small school and it was implied to me that kids wouldn't always be moved into mainstream in case a teacher was lost in the unit. Enough said!

Ruu · 19-02-2016 11:41pm

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

I'm not sure what you are asking exactly?

I tend to use Pinterest and Facebook for materials such as printables etc and they are mainly from American companies. I find the occupation therapy items e.g. modified ear phones for listening therapy are extortionate compared to the prices in the USA and UK. Stuff like weighted vests etc are way dearer too. ASD is a total money racket. It's incredibly expensive.

I think my son is lucky to have been diagnosed now as there is so much stuff online for teaching kids with ASD. Is that what you meant?

Yes, thanks, more or less what I meant. Just wondering if you found any groups offline that you were able to avail of for advice or 'what do I do' sort of support, you know? I only know of IAA but haven't looked much into it and what they can offer. Thanks again for your answer.

A_Sober_Paddy · 20-02-2016 1:19am

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

I personally wouldn't be relying on Wikipedia for information on vaccinating my child....

I find this article interesting.

http://thinkingmomsrevolution.com/the-thompson-transcripts-shocking-revelations-by-the-cdc-whistleblower/

It's not just the actual vaccine that needs to be assessed but also the timing and the fillers used (mercury etc)

As mentioned above, this isn't the place to be debating vaccinations but it's definitely something parents should research before embarking on it.

Certainly not depending on wiki, but its a nice concise summary, and it was fraud. There is Absolutely no evidence that vaccines cause autism, and feel deeply embarresed and sad for people who think otherwise, in the face of zero evidence...

Back on topic...

I'm parent to a child with autism, AMA · 20-02-2016 8:13am

Ruu wrote: »

Yes, thanks, more or less what I meant. Just wondering if you found any groups offline that you were able to avail of for advice or 'what do I do' sort of support, you know? I only know of IAA but haven't looked much into it and what they can offer. Thanks again for your answer.

There are no groups like that in my area. The iaa website is informative in a general, country wide way but I found it very hard to find info on local speech therapists (SLT) , home tutors and OT's (occupational therapist) eg I had to email trinity college and NUIG to try and find an aba tutor in my area.

After his private diagnosis we were given about 10 pieces of paper - books to read, therapies to follow eg pecs, floor time, aba. After the hse diagnosis we were given nothing.

I relied heavily on friends of friends who were further down the line than me for advice. What did their kids do and where? We chose aba for his home tuition and it's worked great but it's expensive. If you are lucky, the dept of education will approve the aba tutor (they want you to use primary school teachers) but that tutor needs a supervisor at €35 per hour which they don't cover.

The hse psychologist ran a course for parents whose kids were diagnosed and I found that helpful. That was only in our area though. Everything is county by county rather than countrywide. So services can be ok in one place and terrible in the next town.

There's no support if you choose to go down the diet and supplements route with the child. The hse dietician thinks it's a waste of time.

That's one of the hardest things - all the professionals think what the other professionals are doing is rubbish eg the hse ot and slt don't rate aba. The aba tutor doesn't rate the listening therapy bring provided by the Ot. His gp wants to give him medicine for the yeast in his gut caused by too many antibiotics and doesn't respect any non medical intervention. It's mind blowing.

alibab · 20-02-2016 9:04am

Very interesting and great to see the interest from people learning about Autism spectrum disorders fair play for answering people questions

I am a bit further ahead of you with 2 boys on the spectrum aged 10 and 11 . My oldest has aspergers and my younger boy is more severe it really is a spectrum with no 2 children the same and presents in so many different ways .

I was lucky in that my youngest was diagnosed at just 24 months by the hse and we had early intervention including a ASD preschool . He was not suitable for mainstream and had been asked to leave as seeing him was upsetting the other parents . I gave up work for 5 years and devoted my time to both boys and getting them help etc . Like you I was broke paying for private therapy as HSE was non existent once they hit six end were transferred out of early intervention . I have not heard from my ASD team in 3 years just left in the wind . I learnt how to do OT and SALT myself and just paid for what I could afford .

Both my boys did not start in mainstream it would of been of no benefit to them or the other kids as they would have disrupted the whole class . With big numbers they would have been lost and forgotten . Sna are not a option now unless there are huge care needs and bowel incontinance wasn't even considered a big enough care need .

I found a excellent school small with 3 ASD units attached and both boys started here with heavy emphasis on integration . Class number were one teacher and 2 sna to 6 children . This was the making of my 2 boys only for the school and how fantastic they are at integration we would not be where we are today and both were full mainstream by 2nd class with no sna needed . My oldest had been thrown out of one school as they were unable to cope with his needs so in some cases units are a fantastic idea . I just wanted to get that out there also that not all kids are able to start in mainstream so I feel it should be balanced especially in regards to children not as high functioning . As I said there is no one fit all in ASD .

I also as a mum to 2 kids on the spectrum believe that vaccines in anyway contribute to ASD . That is my personal informed opinion and both boys are fully vaccinated looking back the signs were there from birth sensory and otherwise .

As for the person who asked regarding Thomas the Tank yes we did have a 7 year obsession with Thomas in fact my youngest first word aged 6 was train . Not mum or dad but train . Thomas went everywhere .

As for the ketchup I presume that is because of food issues related to ASD and the fact a lot of kids love ketchup including ASD kids so it's s bit of s joke that we cover everything in ketchup to hide it . Doesn't work by the way as if the sensation is wrong sensory wise it simply won't be eaten

Lucyfur · 20-02-2016 9:53am

Wow alibab, well done

The ketchup joke was a piss take of Temple Grandin, I think

When she was asked to "marry the ketchups" she shuffled them awkwardly together. I don't know if that's the joke but she was made fun of for it. She's an amazing woman. Anyone deadly with autism should read her books and watch her life story

eviltwin · 20-02-2016 10:05am

I don't personally believe vaccines were a factor in my children's diagnosis. Autism is a relatively new condition but when I look at older people in both my and my husband's family it's quite obvious to us that some of them have mild asd. I'm very lucky both mine were able for mainstream school thanks to amazing support from the school. My youngest wouldn't have anywhere near the same support in other neighbourhood schoools which shows the diversity of support. His new school building opens in September with a dedicated autism unit so I hope to see him grow even more. My daughter did great in school and is now studying for a degree so there is much to be thankful for. The social skills, the OT, we can work on that.

Support wish there is Aspire, DCA Warriors, Asiam, the ripple effect and others which offer support for parents and children but they are mostly in large urban areas

I'm parent to a child with autism, AMA · 20-02-2016 10:40am

That's fantastic alibab. I'm talking about this unit only. I can't trust my child's wellbeing to them after a staff member told me they don't like to mainstream kids in case they lose a teacher ....

Schools and crèches not being able to look after our kids is another issue. He's now on his 5th Creche. The first one wanted her school teacher daughter to be his tutor and when I said no she said we would have to privately fund someone to come in (and suggested her sister) to mind him during practice for the Creche sports day and concert. If we chose not to pay her untrained sister to mind him during practice then they would 'try to keep an eye on him'...

He got out onto the main road from the 2nd one. He wasn't the first child to escape either.

The 3rd one didn't have facilities to change nappies and his toilet training took too long for them.

The 4th one was good with lovely staff but they didn't know how to work with him and finally he's in a fab community Creche which focuses on language as many of the kids there has English as a second language.

January · 20-02-2016 12:23pm

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

Hi Lady is a Tramp,

Ill look forward to your questions and will answer any I can. Obviously, as my child is only 4, I wouldn't have the experience that parents of older asd kids would have.

Well you started with a doozy of a question - autism and vaccines... I suppose where I am right now is that I'm reading about it and trying to make an informed decision. My child was vaccinated so the horse has bolted in that sense and I didn't notice any change in him due to the vaccines. However, I know a number of intelligent, rational and sensible parents who saw immediate changes in their children after vaccines.

I guess where I am right now is that I don't think vaccines suit every child just like children and adults can have reactions to any medication. The number of vaccines now being to administered to young children in the USA for example scares the life out of me (see attached). So I suppose I think they should be tailored to each child rather than just pumped into the entire population.

I don't tend to ask other parents about the vaccine issue as its a very personal view.

Do we not get the same vaccinations in Ireland basically? It doesn't look like there are many on that list, the ones highlighted yellow are given in that age range, not every couple of months.

Well done on doing the AMA. I've no specific questions for you personally but how do you think the HSE can improve their supports for children who have been diagnosed with ASD?

I'm parent to a child with autism, AMA · 20-02-2016 3:28pm

January I'll have to put some thought into the hse question so I'll be back to you.

Evil twin and alibab your feedback would be welcome here as its relatively early days for me yet dealing with the hse.

eviltwin · 20-02-2016 3:33pm

Cut waiting lists for a start. It's over a year in my area for an initial psychological assessment. Nearly the same for OT assessment. And then you go on the waiting list for treatment. Luckily we were able to go private but it's not possible for everyone and early intervention is crucial.

January · 20-02-2016 4:04pm

eviltwin wrote: »

Cut waiting lists for a start. It's over a year in my area for an initial psychological assessment. Nearly the same for OT assessment. And then you go on the waiting list for treatment. Luckily we were able to go private but it's not possible for everyone and early intervention is crucial.

11 months for developmental paed (and we've lost one to retirement recently too)
15 months so far for OT
24 months for SLT
14 months for psychology
12 months for AON atm.

It's an absolute joke.

It's even more of a joke when you know that AON's legally have to be completed within a certain time frame and they are not being done within that time frame at the moment.

I've a daughter who was diagnosed with DCD last year, she was diagnosed with SPD when she was 2. I've also another daughter who is on the waiting list to be assessed for DCD. We assume she'll be assessed around 2018 at this rate. We can't afford to go private and we're thankful that the school is giving her resource hours without qualifying for them and a motor skills group to help with certain issues.

Recruitment of more OT's more SLT's and psychologists should be a priority for the HSE.

Konata · 20-02-2016 4:24pm

How did, and do, you yourself cope as a parent of a child with ASD? My partner taught in an ASD unit for a few years and it helped teach both us a lot more about kids with ASD (I knew absolutely nothing about the condition before he started that job) which is great because I feel like I understand ASD a lot better now but I always think a lot about the parents too - how do they cope? I imagine it's extremely upsetting to see your child not develop at the expected rate, and to get a diagnosis of ASD, and also to just deal with your child's struggles every day. How on earth do you get through it? Does it get easier to deal with the emotional impact of it all as time goes by? Obviously making the best life possible for the child is the priority but I just keep thinking about how ASD affects parents and siblings etc. too. Would be interested in your experiences (good or bad) in helping yourself become accustomed to having a child with ASD.

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

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