Autism

Jazbee

Thanks missingtime for posting that, a really good article.
Was feeling a bit down today, and that gave me a little kick up the arse! My youngest has been diagnosed recently and I have another son on the spectrum also. But the younger lads speech is way worse than my older lads. Luckily we have a playschool place in a school for kids on the spectrum.

Hope all the parents are having a good summer

mrshappy

Just re reading thread again and wondering how everyone is doing. My son is flying it thankfully. I seem to see Autism everywhere though, perhaps it is true that by 2035 every 2nd child will get a diagnosis

yellow hen

mrshappy wrote: »

Just re reading thread again and wondering how everyone is doing. My son is flying it thankfully. I seem to see Autism everywhere though, perhaps it is true that by 2035 every 2nd child will get a diagnosis

I'd never seen this thread before as it was so old but it's interesting. We're only starting out on early intervention and if love a thread like this to discuss it with other parents. I have a 6 day old baby and my son isn't dealing with it very well - it's the first time where I can genuinely see that his behaviour is very different to other children. It frightens, angers and frustrates me a bit to be honest. Then the guilt arising from those feelings eats me up

ziggy23

mrshappy wrote: »

Just re reading thread again and wondering how everyone is doing. My son is flying it thankfully. I seem to see Autism everywhere though, perhaps it is true that by 2035 every 2nd child will get a diagnosis

Hi there
My 6 year old boy was diagnosed a week before his 6th birthday. He's doing great. Sometimes I look at him and think does he really have asd or is it just adhd and spd he's very high energy and extremely inquisitive never stops asking random questions. I wouldn't change him for the world though he's a character 😊
Edit:obviously I trust the medical profession's diagnosis but does goes how to show how big a spectrum it is. I was just reading my last post here over 3 years ago! I was worried about him not talking... He's making up for it now I tell you!

eviltwin

yellow hen wrote: »

I'd never seen this thread before as it was so old but it's interesting. We're only starting out on early intervention and if love a thread like this to discuss it with other parents. I have a 6 day old baby and my son isn't dealing with it very well - it's the first time where I can genuinely see that his behaviour is very different to other children. It frightens, angers and frustrates me a bit to be honest. Then the guilt arising from those feelings eats me up

Congratulations on the new baby Yellow Hen. Your son was an only child up till now wasn't he? It's natural he will feel put out regardless of his condition and its still very early days. Kids on the spectrum hate change and a new baby in the house is a massive change for everyone. Please don't feel guilty. My son is similar, even simple changes like a different brand of breakfast cereal upset him but I try to look at the bigger picture, he has to live in a world he can't always control and things like this are helping him even if it doesn't feel like that sometimes! Congratulations again xxx

CaraMay

Ah congrats yellow hen. Great news.

Mrs happy I'm so glad to see your positive update. My son is 2 years in (home tuition & others for last 2 years) and he's doing great too. Speech still very slow but he's just 4 and 5 months so fingers crossed. It's incredibly traumatic at the start isn't it. I find it sad now tbh

CaraMay

Oh btw op our hse psychologist said they now think it's 1 in 20 boys with the bulk of them not diagnosed.

yellow hen

eviltwin wrote: »

Congratulations on the new baby Yellow Hen. Your son was an only child up till now wasn't he? It's natural he will feel put out regardless of his condition and its still very early days. Kids on the spectrum hate change and a new baby in the house is a massive change for everyone. Please don't feel guilty. My son is similar, even simple changes like a different brand of breakfast cereal upset him but I try to look at the bigger picture, he has to live in a world he can't always control and things like this are helping him even if it doesn't feel like that sometimes! Congratulations again xxx

Yea he's been an only child for 3 years so I knew the baby would be a shock to him but he's almost repulsed by her. We're home a week today and things are improving. He gave/threw a bottle at her today and tried to play with the bouncer mobile for her. He is just tantrumming to beat the band and it's exhausting. I called the AON officer todY and try and understand what happens now and he admitted that the process is very fragmented and services are offered from several areas. For the AON, we're awaiting the psychologists appt. we're also waiting to meet the disability team to see if SLT, OT and physiotherapy should be offered via primary care or a multidisciplinary approach. Hoping some decision is made soon because at the moment he has access to nothing.

CaraMay

That's so tiring yellow hen. Did you think of a private diagnosis so you can at least get home tuition started?

yellow hen

CaraMay wrote: »

That's so tiring yellow hen. Did you think of a private diagnosis so you can at least get home tuition started?

We actually have s private diagnosis and home tuition approval for 10 hours a week until he's 4 (is that a mistake do you think? I notice everyone else increases to 20 hours at 3). We haven't had any luck in finding a tutor though.
Pardon my ignorance but what sort of programme will a home tutor run?

CaraMay

It's 10 from 2.5 to 3 and 20 from 3.5 upwards. Did you try aba ireland Facebook page? Also email trinity and NUIG. I'll pm you the addresses. You also advertise in rollercoaster.ie under discussions and special needs.

Roselm

CaraMay wrote: »

It's 10 from 2.5 to 3 and 20 from 3.5 upwards. Did you try aba ireland Facebook page? Also email trinity and NUIG. I'll pm you the addresses. You also advertise in rollercoaster.ie under discussions and special needs.

Just do your research before diving into ABA as it's a very particular/divisive type of approach and not for every parent or every child. There was a documentary on it recently, think I found it on 4od/RTE player

CaraMay

Roselm wrote: »

Just do your research before diving into ABA as it's a very particular/divisive type of approach and not for every parent or every child. There was a documentary on it recently, think I found it on 4od/RTE player

I agree that you should research anything you do with your child. We're doing aba for 2 years now and I've never looked back. Our tutor us so fab. She's implementing our private Slt work each week and doing a fab job, she's bringing him horse riding for a few weeks until he gets used to it and we can take over and she's working on getting him to be less scared of the doctor and doctors surgery. My child would only eat for her last two years and she's persevered each day until finally he's started feeding himself / eating for me. Aba is not all tabletop work and it's been amazing for us. They love each other and gave such crack

limnam

Roselm wrote: »

Just do your research before diving into ABA as it's a very particular/divisive type of approach and not for every parent or every child. There was a documentary on it recently, think I found it on 4od/RTE player

Rather than watching rubbish on the tv for research. I would try to get in contact with local parents who have chosen to go down the route of ABA and how it has effected them as parents and the child, talk to as many parents as possible.

You could watch for example a documentary on Irish creche's and see a baby been slammed on the floor and rush to get all the kids out of the creche. Documentaries are generally aimed at getting viewers and you won't get that without something controversial to watch.

Yes it's crucial to do the research but I wouldn't do it on Channel 4 or you tube.

yellow hen

We had our meeting with the psychologist today and she will be recommending that no further psychological testing us required. She was satisfied that, although he clearly has a s&l delay and some sensory issues, he doesn't fulfil whatever criteria she uses to refer him on further. So far we've had two s&l assessments, two OT assessments, one meeting with the area medical officer, one meeting with the network disability officer and one psychology assessment. With a 2 week old baby, I am mentally exhausted with everything. I felt a complete weight lifted off me today. It doesn't change the interventions that he needs but it does mean that the assessment journey is coming to an end.

mrshappy

Yellow hen - just checking in almost a year on, how are things going for you now?

yellow hen

mrshappy wrote: »

Yellow hen - just checking in almost a year on, how are things going for you now?

Wow, a year already! Thsnks for asking. It's good to sit and reflect on the year that's been.

Its been a tough year and I still haven't made my peace with whatever he may have to be honest.

He turns 4 in a fortnight and his speech is estimated to be 12-18 months behind where it should be. He can express himself and initiates conversations but struggles to build full sentences sometimes. I would also think him immature for his age. His balance has improved although he's still very much a sensory seeker. He runs everywhere and throws himself to the ground looking for impact. On the plus side, he sleeps great, eats great, doesn't get remotely bothered by routine changes and doesn't ever have meltdowns. He adores pre-school and loves playing with the other kids although his poor receptive language definitely puts him on the back foot. He can totally make good eye contwct but he hates very direct one on one contact and will avoid it. He's incredibly affectionate but just today I was trying to tell him that kisses are ok for mammy, daddy, granny, grandad and his sister and high fives are better for his friends. He adores his sister and she him and my heart bursts with love watching them together.

He's had some slt and ot from the hse but I was so unimpressed by it. We just try to learn whatever we can and then implement it at home. He has another year of preschool so due to start school at 5.5 so praying he'll get there by then. Id love to kearn fron people whove been where we are and what else would be valuable.

I just read back through the whole thread but dont see anythinh on your child. Are they on the spectrum? How are they now?

Mr. Mac

Wow!!!!!!!!
OP here and I cannot believe it has been 6 years since I started this thread.
A lot has changed in those years as our journey through the murky world of Autism has evolved. First of all the main thing is that my little lad is doing great. He's 9 now and loving life. Yes hes autistic and yes still has numerous difficulties but hes in great form. He doesn't shut up talking which is great although a lot of his words and sentences can be meaningless.

We tried mainstream school for 2 years but it just didn't work out. He loved it and his SNA was superb but it turned into a babysitting service and he wasn't getting the 1:1 attention that he badly needs.
Roll on another 2 years and hes in a class of 6 kids, 2 SNA's and a teacher with access to a gym room and a sensory room. He just loves going to school everyday.

Hes very routine orientated now so any change from his daily rituals can be a struggle so school holidays can be very difficult for him. Life as an autism parent is like a roller coaster of emotions. Some really dark days but some amazing experiences. We have a 3 year old girl and she has been great for him - they get on so well. Its amazing the differences between them even at her very young age.

We were under the HSE for years but although they are good people they just didn't provide the necessary resources for him and as a result we have spent thousands on private therapy sessions. Its expensive but so worth it.

Ok so here's my top 5 things that annoy me/frustrate me/gets me down about being the father to a wonderful 9 year old autistic little boy called Matt.

1. I hate driving around on a Saturday morning watching my friends standing at the side lines of GAA/football/rugby matches cheering their kids on. I'm a sports fanatic and wish I could do the same. Even if he wasn't into sports would still be nice to have the option.

2. Sitting in work and hearing colleagues complain about their "normal" kids behaviour. they have no idea what our lives can be like. Just be thankful that a difficult day is few and far between. For some or most of us its a daily battle.

3. Waking up on a cold wet and miserable winters day wondering what the hell I am going to do to occupy the lad. Trips to the cinema are out of the question, going to restaurants can be stressful and play centres usually packed which can be awkward. The options available to us can be reduced significantly.

4. Looking at my 3 year old daughter trying to play and interact with her elder brother but getting knocked back more times than most. Don't get me wrong they get on great but I know her frustration will grow more and more the older she gets. I wonder how she will cope.

5. Waking up in the middle of the night in a cold sweat worried sick at the thought of what will life be like when Matt is a fully grown adult. How will we cope, where should we live, how will we and he handle meltdowns when he's a man. This country is useless in providing adequate services for adults with special needs. I don't want my son exposed to this **** system.

HOWEVER on the flip side here are my 5 favourite things that make me proud/appreciate/happy that I'm the father to a wonderful autistic boy called Matt.

1. Years before diagnosis I used to get stressed out about my job and get really stressed out about it. Laptop would be out every minute when I got home, the missus would be pissed off at me etc. Nowadays the laptop stays in the car. Work is a job - big ****ing deal. Its not the be all and end all. Going through the trials and tribulations of trying to raise my son is far more stressful than any other work situation. Focus on my boy and take the job for what it is. A job.

2. I appreciate the fact that's he's a happy, healthy and affectionate little boy. sleeps 11 hours every night, rarely sick, mostly in great form and tries to interact with people in his own special way. He's verbal but mostly repetitive words and phrases that can make no sense. They make sense to him though. So much to be thankful for. I've spoken to other autism dads and they are in a far more difficult position than me - as a lot of you guys are. Gives me the kick up the arse I need when I'm feeling down.

3. The lad loves being active - Jump Zone, swimming, horse riding, playgrounds, you name it - he wants it. Brilliant. helps with keeping me active trying to run around after him and make sure he ain't doing something he shouldn't be :-)

4. When he was first born I wanted all the best things for him that life can offer - a good education, enjoy sports, meet girls, travel the world, get a good job, married, kids etc,.. the usual stuff. Now I realise that the simple things in life are far more important than the above - happiness, health, affection, loving, caring etc. he's all of that and more

5. Speaking to Dads and Moms who face the same challenges every day as I do. As we all do. Little words and wisdom and advice can make a big difference. Even knowing you are not the only one on the verge of losing the plot after a bad day helps a great deal.

Interested in hearing in other peoples opinions on what drives them crazy and what makes them happy being an autism Parent.

Regards

Mr. Mac

yellow hen

Thank you for such an honest post. You sound like a great dad and matt a great wee lad.

Jen44

Glad I found this thread!! My three year old daughter has been referred for the AON. Concerns were spotted by her Montessori school which we started her in at 2 1/2! Main concerns at that time were difficulties with attention, focus poor concentration. Since then she has become very clumsy often walking into the bansters and stuff at home or just falls down for no apparent reason. She moves constantly just jumps and fidgets around, she can't sit still for a minute. I feel frustrated by the whole AON process having heard nothing for a few months after the initial meeting with the AON officer I rang to be told the waiting list for PT was at 10 months and psychology over a year!!! That being said and the fact my daughter has now started to do a few more strange things making up words and making strange sounds still falling around and her behaviour is very difficult at times we have decided to look at the private route. We have an parent interview this coming Fri with a place in Sandyford. I feel sick with worry and very nervous also we as parents feel very unsupported as our own parents refuse to believe that anything is going on and that there is nothing wrong with that child etc!

yellow hen

@Jen44, is your appt with the childrens practice? If so, don't worry. We went to them and they were brilliant. Your daughter sounds like my son. He's 4.5 now and still bumping into things and falling over but he swims and horse rides every week and he's getting bigger and stronger all the time.

I don't really talk to people about my son as they wouldn't understand either so we just take it one day at a time. It will get easier. Good luck tomorrow.

Jen44

Hi there it's in the child and adult therapy centre in Sandyford