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

I'm parent to a child with autism, AMA

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

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!

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

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

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!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

I'm parent to a child with autism, AMA

Konata wrote: »

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.

Hi Konata,

Who says I’m coping lol.

I don’t want to offend other parents on here who are maybe more accepting of the diagnosis so I can only speak for myself. If I’m to be totally honest, I am absolutely heartbroken. We both are. I absolutely hate everything to do with asd. It’s my worst nightmare come true and I wish it didn’t happen to my little man (and to us). We found out over 2 years ago and didn’t tell anyone even our parents. My mother guessed and then we confirmed it but I only told most friends about 6 months ago. That was stressful in itself as I was dodging people and events so I wouldn’t have to tell lies about how things were going. I guess I wanted to process it myself before telling other and once it was out then you were open to people hopping questions at you when least expected.

I’ve made new friends through ASD and it’s great to have them as they ‘get it’. I’ve also met other friends who have kids (not ASD) the same age and they are fantastic but sometimes it’s almost too painful to meet them with the kids as their kids are playing and chatting together and my fella has no interest in them.

Our lad doesn’t sleep so we are dealing with constant tiredness and extended family is of limited use. TBH did cause a lot of stress between my partner and had a huge impact on family life. That’s in the past now and we were very lucky to have gotten through it as many parents don’t and many couples split under the pressure.

We can’t really go to restaurants as the noise hurts his ears. On top of that, he wouldn’t sit still for long enough and most likely wouldn’t eat anything on the menu. Food issues are also very common with ASD kids. I miss eating out and find it sad when I see other kids in coffee shops etc

Holidays are stressful as you need to find a place that’s 100% locked tight. Our house is like Fort Knox with locks on all windows and doors in case he escapes. If there is a fire we are in trouble but the risk of fire is less than the risk of him falling out a window or getting hit by a car. Absconding is a huge issue for some ASD children and it means the parents never get a seconds peace when you are out of your home environment. Many ASD kids have no sense of danger

It’s very hard bringing your child to professionals and all you talk about is what he can’t do. The HSE prognosis is always bad and you get the worst possible outcome thrown at you at the start e.g. he might only eat red food, run on his toes forever, scream when he leaves the house. Luckily, this hasn’t panned out for us but it’s always in the back of your mind that the child can regress at any stage.

80% of asd adults don’t have jobs and I think the same number live at home with parents. This is a constant worry as the future is so scary for my child. Will he be bullied? Will he every have a friend? Will he have a partner / child? Who will look after him once we are gone? I used to think about getting sick and how it would impact my life e.g. not being able to work / travel. Now I am petrified that I get seriously ill in case I’m not here to mind him.

I’m on carers work to look after him and tbh its very boring and I miss having my salary to buy nice things. I hate having my hand out and I still wish I could have nice holidays, clothes, nights out etc rather than paying €160 per week for speech and occupational therapy before any additional cost for special foods, supplements, equipment etc.

I don’t like having someone (his home tutor) in my house for 4 hours per day but its good for him so it has to be done.

The last thing I’ll whinge about is not being able to have a conversation with my child. He doesn’t understand Santa / birthdays / tooth fairy etc and I don’t know if he ever will… Its really, really hard trying to get the best care for him and that’s incredibly stressful but, in my case, the most upsetting thing is not bring able to do normal stuff with him and not being able to know what he is thinking.

It’s not all doom and gloom and I’m lucky with my fantastic little boy. I just wish life didn’t have to be so hard for him.

eviltwin

HugsiePie wrote: »

Hi

Do you feel that adhd/aspergers/autism tends to be overdiagnosed? I know a few people with adhd and aspergers syndrome (including people in my immediate family) that well imo they really dont have. I now its not my place to say but I have found so many kids ho are just a little quirky, different, socially awkward, bold etc get diagnosed with such conditions and disorders almost as an excuse for their behaviour.

Kids with ASD don't usually present as bold. My son has meltdowns but you can tell it's not a tantrum. It's a totally different thing. It's not diagnosed on the basis of shyness, nerdiness, being happier to play alone etc, these are just some of the obvious traits but it is a very complex set of neurological issues.

alibab

HugsiePie wrote: »

Hi

Do you feel that adhd/aspergers/autism tends to be overdiagnosed? I know a few people with adhd and aspergers syndrome (including people in my immediate family) that well imo they really dont have. I now its not my place to say but I have found so many kids ho are just a little quirky, different, socially awkward, bold etc get diagnosed with such conditions and disorders almost as an excuse for their behaviour.

I want to answer this if that's ok . No I don't think it is over diagnosed my oldest if you met him now aspergers and dyspraxia you might not know he was on the spectrum . You would realise he is quirky and different by at 11 now he himself has researched and understands his condition . through lots of work with theory of mind and the development of coping skills on his behalf he can hold it together very well socially so no one knows . He might them come home go this room and stimm vocally and physically to let it all out .

The psychologist that diagnosed said that he does not give the diagnosis unless it is impacting on everyday life etc . The child he is now compared to say age 5 is unrecognisable . He was ask to leave school in junior infants as the teachers could not cope so needed specialist unit . He used to go up to people and smell them etc and had vocal and physical stims . They actually did a brain scan to outrule a tumour his tics were that bad . Huge anxiety also that will always be there but we work through things . That same child now you would not know as I said .

My youngest is different as he is on a different part of the spectrum and people know straight away etc as it's more obvious etc .

The main thing is what helped my son be where is is today was getting that diagnosis as he understands his condition and why he is different etc . Without it he would be a very confused boy . He understands why he doesn't need sleep and has routines and rituals he needs to do . If overwhelmed he can give a special hand sign to the teacher to have a movement break etc in the classroom . He came up with this idea himself . I believe it's more detrimental not to have s disgnosis and I would say don't judge as no one knows behind closed doors the everyday struggles you might only see in a snap shot of someone's life .

eviltwin

I think it's possible that it is over diagnosed, it's still a newish condition and there are still things that we are learning about it. My son also has adhd, it's common for people with asd to have additional problems. My son can't sit still for long periods without a movement break, once we factor those in he is fine but if he did have them he would get restless and upset. He's highly sensitive to loud noises, colours and lights and he will have a meltdown if someone touches him without permission. To those who don't know us it probably does look like he's a brat at times but when you know the child you can easily see the difference. My kids were as naughty as any child but it's easy to tell when they are reacting to a stressful situation vs just being annoying.

alibab

Konata wrote: »

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.

.

Coping is subjective to everyone . I am further along so will answer this also if that OK as I feel good to have lots of info from those with younger and older kids etc .

At first no I didn't cope . My marriage split but who knows if ASD was the reason but it didn't help . I had to leave my job and took 5 years carers leave living week to week on very little . When my second son was diagnosed I was devastated and can honestly say acceptance took my years .

I still don't call it acceptance but it now no longer dominates my life . Things do get easier weather that is in improvements made etc in time or weather I changed how I deal with things I don't know . I went back to work full time and got promotions etc and found a fantastic childminder so maybe that helped it's hard to say . I decided I needed to have a life of my own while dealing with everyday life .

I have great hopes for the future but who knows I have no doubts my oldest hopefully will learn to stand on his own two feet . My youngest I see us always together etc but that is fine . We are going to travel the world together when I retire and he is the best company I could have.

As I said I am 11 years with ASD now so in a different place but I remember the anguish and despair that I felt for s very long time

eviltwin

I'm coping fine now, wasn't always the case. I do tend to look to the future a lot and worry but I'm trying to focus on the here and now. My husband is totally blase about it, he doesn't see the autism if that makes sense so he really helps me not get too bogged down in the what ifs. The way he sees it every parent has some challenges at some stage and this is ours. I am lucky my two are mild - daughter has Aspergers, son has Aspergers and ADHD - so others with more severe children might have a different outlook. I'm lucky to have a great support system and a very understanding boss and patience and a bit of humour go a long way. Some days I cry and want to run away but things could be a lot worse. Ultimately I feel very lucky and wouldn't change them for the world.

I'm parent to a child with autism, AMA

HugsiePie wrote: »

Hi

Do you feel that adhd/aspergers/autism tends to be overdiagnosed? I know a few people with adhd and aspergers syndrome (including people in my immediate family) that well imo they really dont have. I now its not my place to say but I have found so many kids ho are just a little quirky, different, socially awkward, bold etc get diagnosed with such conditions and disorders almost as an excuse for their behaviour.

I know of parents who have exaggerated children's behaviours etc to get payments like dimicilary care allowance etc but I think asd is under diagnosed.

Niamh at the start mentioned 1 in 100 people. New stats from the states claim 1 in 35 boys and an eminent psychologist who works in the field said they think 1 in 20 boys lie on the spectrum. Clearly 1 in 20 boys aren't diagnosed so there are obviously boys falling through the net.

It's harder to diagnose in some girls as they present differently so they are also not getting the hell they need.

Konata

Thank you to all three of you for answering my question - even if it was quite heartbreaking to read. The focus is obviously on the child with ASD and their standard of life, but I did wonder about how much ASD affects not just the child, but those around them too, so I appreciate the insight. As I suspected, it's an incredibly difficult thing to deal with - though I imagine I can only barely begin to truly understand - and I wish all the best for not just your kids, but for yourselves as well.

I'm parent to a child with autism, AMA

You are welcome. It's not all doom and gloom because any achievements they reach are priceless. It's just worry and fear like I've never experienced before and wouldn't wish on my worst enemy. I'm not religious so I can't even believe it's 'gods will'. I guess my faith is in the professionals we have chosen to surround him with. I truly believe they are the best in the country so fingers crossed their magic works

RainyDay

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

I know of parents who have exaggerated children's behaviours etc to get payments like dimicilary care allowance etc but I think asd is under diagnosed.

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.