Autism - Update

[mottyman]

[b]UPDATE.....[/b]

G'day all,

Just a quick note to say that our 2 1/2 year old Angus was also today diagnosed with the same disorder as his older half brother Andy (read below...). He was diagnosed with Aspergers Syndrome - a form of Autism. So.... we now have two special needs kids in our family.

We really needed the diagnosis so we can access all the professional help necessary to give Angus the best chance.

Some of Angus' main issues are:

Diet - only eats wheatbix, toast, biscuits, apples, lollies, fruit bars (that's it!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!)

Sleep - well... he doesn't. He's awake from about 11pm to 3 or 4am. This is our biggest drama by far and the one we're tackling first. We've already made progress here in the last 3 weeks so that's good but there's still a fair bit of waking during the night. We are getting a bit more sleep now though thank god.

Obsessive behaviour - needs the plug from the bath in the same spot each night, will only drink from certain cups, needs the same routine - day in day out (I'm sure you get the picture). Any deviation and its world war III and he's uncontrollable.

We have to plan hours in advance just to leave the house if he's having a bad day. We have to tell him we're going in the car and some days we all have to go because if someone stays home he loses his mind. This is quite limiting and we live our lives around how Angus is any particular day.

Mood swings - one minute he's a beautiful kid - the next minute hes screaming, throwing himself on the floor with no apparent trigger or reason for the change, Last Sunday he had an episode that lasted 6 BLOODY HOURS...., then... he changed back and was completely fine again.

So... now that we have two kids on the Autism spectrum, we need to see a Geneticist at the hopsital to work out if there's a gentic link, though it's on my side if it is as Andy and Angus are half brothers.

Still, 1 out of every 164 people sits on the autism spectrum somewhere so maybe we just got two???? Who knows at this pont.

Anyway, that's our update. We now start all over again with Angus while maintaining things with Andy... The only saving grace is that we've done this before....

Cheers

David.

G'day Raiders,

I've written this over a period of time, it's quite long but I hope others in a similar situation to me find it useful.

I know there are other parents out there with Autistic kids and I wanted to share my life experiences in dealing with, and having autism spectrum disorders diagnosed, then getting the appropriate treatment.

As many as 1 in 100 people in Australia have an Autism Spectrum Disorder. These disorders take many forms and everyone would be aware of the movie "Rainman". Dustin Hoffman's character was autistic.

Autism is so often in the first instance mis-diagnosed as something else and treated incorrectly. Commonly kids with Autism are diagnosed too early as having ADD, ADHD, behavioural/social disorders as well as a hundred other things no one's ever heard of.

Autism is called the "hidden" disorder for this reason. There is no "cure" for Autism. You live with it.

Our circumstances took the path that a lot of other families take. Andy was always "a little different" and this came out clearly at school.

By the age of 6 or 7 he'd never once been invited to a birthday part, he'd never had a proper birthday party of his own with other kids and, more worryingly, didn't have a single friend - AT ALL!!!!!

At school he was a social outcast, not involved in anything, picked on and bullied. Andy has no natural social skills. The things we take for granted in social situations, making eye contact, being part of a group and making friends, Andy can't do.

Certain teachers could not tolerate him and singled him out for "special treatment". Some were quite un-kind to him.

He couldn't do normal things other kids could do. He seemed "afraid" of everything and generally didn't seem like other people.

What was really hard was watching Andy go through it. He knew he was different and saw other kids doing all the fun stuff, but he just couldn't. He would cry and run away. This just lead to bullying and being shunned by other kids as they just thought he was a baby.

You see so many stories of kids being bullied and being made social outcasts all their lives and then taking it out on the community later in life in a very bad way (shootings, crime etc etc). We wanted better for Andy.

Typically, being a bloke and Andy's dad, I refused to accept anything was wrong with him for a very long time (everyone else was wrong) and without my wife (Andy's step mum) taking the lead, I don't think we'd be anywhere today. She made it her mission to help both of us (get Andy diagnosed, and get me to see what was wrong), and we are all better for it today because of all the work she did.

Over a period of 3 years we saw heaps of family doctors, paediatricians, clinical psychologists and finally arrived at the Child Development Unit at Westmead Hospital.

Here, Andy was finally diagnosed with the following things:

ADHD

Asperger's Syndrom (a form of Autism), and…

Severe Anxiety.

Now that we have that diagnosis, we have heaps of support in the community. Andy has a full time teachers aid that he spends an hour with (one on one) every day at school teaching him social skills and how to deal with certain situations. Both the school and the after school care he attends a few days a week gets extra funding and staff to help look after Andy. We are part of the Autism NSW outreach service and on bad days can ring a number and get support and assistance if we need it, so can his school.

My wife Bec (an extremely special woman to take all of this on for a child that isn't even hers) attends an Austism support group and Andy goes bowling with the kids from that group each Friday - which he loves. We have made lots of friends in this group and have each others support through the tough times.

We were put under the care of a fantastic paediatrician in our local area to conduct drug trials to try to improve Andy's quality of life.

We started with a drug trial for the ADHD. The thinking was get him to concentrate and be less disruptive at school and he might be able to make some friends and do his school work better.

The drug was the dexamphetamine Ritalin.

Let me say at this point - this is the hardest decision as a parent you can make and it took us about 4 weeks to get our head around it and agree to do it. Putting your kids on this drug with the stigma surrounding it is the worst feeling. You honestly feel like a complete shit and that its all your fault and you're a complete failure to your child.

The drug trail wasn't a success and it made him heaps worse. He was able to concentrate better, sure… but it made his autistic "rainman" behaviours much, much worse. We stopped that trial strait away.

The next step was to try to treat the anxiety which is where we should have started.

Andy is now on a drug called Setraline (Zoloft) to treat his anxiety. This drug has worked miracles with Andy and his quality of life has improved 100%. He can now do all the things that other kids can do. He's just returned from a scout camp to the Dubbo Zoo, something he would never have been able to do until recently.

He can swing on a swing!

As a result of his anxiety decreasing, all his other symptoms associated with the Autism and ADHD have lessened dramatically.

It took us three, long hard years to get to this point. At times I was sure we wouldn't make it.

Andy is now a much more confident, happy person. He still has problems day to day that we deal with as they arise but he now has a "best friend" at school and has been invited to his first sleep over birthday party (that of his best friend).

His school work has improved, the bullying has stopped and the teachers report better attention in class.

The Autism is still there. He still has his "rainman" days and he is still quite immature at times. Bec and I have had to learn how to deal with Andy's Autism and a large part is just accepting he is autistic and dealing with it. This is much easier said than done some days, especially for Bec.

We treat the Anxiety, and we ALL live with the Autism.

Cheers

David.

Edited June 12, 2007 by mottyman

[clutch]

Wow Dave , it has been a long road to getting the correct diagnosis and treatment for Andy hasn't it!

It is fantastic news to me that things have improved for Andy to such an extent

Way to go Bec, Dave and Andy

.....by the way i think I may have some of those symptoms

[mrsswordfisherman]

An excellent post David. Thank you so much for sharing this information with us all. As a Registered Nurse I have been involved with families in similar situations and the road is long and rocky but once you can see the light at the end of the tunnel it is well worth it. Sertraline is an excellent drug and I too have witnessed huge changes in the patients that take it. Side effects are minimal.

This is a great triumph for you all and good luck on the journey mate.

Cheers mrsswordfisherman

[BROWNIE]

CHAMPION

[Sharky]

Thats a touching story dave. I just want to buy you a beer and give you a pat on the back thanks for sharing that and keep doing what your doing.

[mottyman]

Hi all,

.....by the way i think I may have some of those symptoms

Clutch - don't we all mate... don't we all????

One particular thing sticks in my mind. When we received the diagnosis we were completely up front with Andy and let him read all the books and brochures on the conditions he had. Being a "little professor" he likes reading text books rather than stories anyway. He can't relate to stories becasue he doesn't understand the relationships in them although he's getting better.

After reading it all, his face lit up like a thousand watt globe and he said, "Wow, this is me, this is what I have".

The world fell off his shoulders!!!.

I think he stopped blaming himself for his behaviour and was able to accept things weren't his fault.

This was a major turning point.

Anyway, thanks so much for all your very nice comments. If the post helps someone else then it will have been well worth putting up.

Donna, my wife Bec is a nurse as well - you all deserve medals, fair dinkum!!!

Cheers and thanks again.

David.

[pogo]

Good on you Dave,

Hard slog, All the best.

[OWZAT]

G`day Motty ,

One has only to read your prior posts to know that you are indeed a special person .

But its only just now , we have all learnt just how special you BOTH really are.

You both , have my upmost admiration ! , and thank you for an extremely uplifting post.

Mick

[mottyman]

G`day Motty ,

One has only to read your prior posts to know that you are indeed a special person .

But its only just now , we have all learnt just how special you BOTH really are.

You both , have my upmost admiration ! , and thank you for an extremely uplifting post.

Mick

Thank you Mick!

I'm very embarressed by such kind words.

My hope is that people in a similar situation know they're not alone and although as Pogo says, it's a hard slog, things can get better.

We still have a long way to go but it's so much easier when you know you have support.

Cheers

Dave.

[BUSTER 1]

Thank you Mick!

I'm very embarressed by such kind words.

My hope is that people in a similar situation know they're not alone and although as Pogo says, it's a hard slog, things can get better.

We still have a long way to go but it's so much easier when you know you have support.

Cheers

Dave.

Dave & Beck you are the type of people that restore my faith human nature

your son is blessed to have you both

[Guest Jewel]

The world can be a shithouse place sometimes mate!

Your young fella is lucky to have parents like you that behave like parents and try to fix things rather than run away as its all to hard or blame someone else.

Its good to see that there are still good folks out there.

On ya mate!!

[Guest BBM Rick]

Dave,

I sense the pride you have in Andy and his ability to comprehend things that others wouldnt understand, and also the pride you have in Bec for being a tower of strength and pro-active in helping the little man. Just dont forget to be damn proud of yourself, you are no doubt an inspiration to Andy and Bec, but to a lot of us out here in Raider-Land after reading your account of the trials you have been through. Keep your head held high mate, you are a champion.

Rick.

[Mick]

That story sounds very similar, as we have been down that road with our little guy who is 4 and has high functioning autism/sensory intergration disfunction/severe anxiety/visual impairment.

But he still loves his fishing.

Wivenhoe (Bouncing for Bass)

Regards

Mick

Edited April 13, 2006 by Mick

[the_lure]

i have tears in my eyes mottyman, so glad it has all worked out for you. I don't think i would have coped so well.

Chris

[mottyman]

Hi Mick,

Fishing obviously suits him, check out the smile on the dial

Evidently its quite common for autistic kids to suffer with severe anxiety, who can blame the really??

Andy has a sensory disorder as well, again very common with Austism. For example, a hair cut is an excruciating experience and the feeling of the hair on his face and neck is like torture.

Geez, the list goes on and on doesn't it??

You've obviously done extremely well with him and have his issues sorted out early. Sounds like he's in great hands.

Cheers,

David.

[Guest madsmc]

That's an amazing story David! I cannot begin to understand how you must have felt going through this.

It's a huge credit to yourself and Bec for doing the hard yards and getting through the tough times. I'm sure that Andy appreciates all that you have done, even if he may not be able to show it.

Sometimes we get too caught up in the unimportant parts of life and forget that it's family and friends that really make the difference. Thanks for taking the time to share that story with us mate, and all the best to you and your family.

Shane

[Jewhunter]

As a Father my heart goes out to your family Motty.

My niece also suffers from Autism & has had hard time of it. She had to wear leg braces to help her walk.

She is now 8 & the braces are off but life is tough for her.

Yes, we all live with this.

All kids are special, no matter what.

Good luck on your journey.

Grant.

[mottyman]

Hey Ben,

No, it was the Child Development Unit at Westmead Hospital. We were referred to them by a colleague of Dr Mark Chapman.

We're currently under the supervision of a local pead by the name of Dr Alison Poulton. She is just fantastic and we're down to 3 monthly visits with her now which is great. Andy really likes her as well.

Thanks for the link to site, looks great!

Cheers,

David.

[pk-fishn]

mottyman i commend you on your efforts and persistance,

in year 10 we had to do community service and we got sent to a special school with autistic kids and children with other disabilites our duties were to help out. the situations some disabled kids are put through is really tough ( two kids at this school were being fed through drips and had no movement they could only smile!!)i must say it was a very very rewarding experience and i and mates did this again earlier this year (year 11), it was good fun playing games with them and it was hard work gaining their trust but half the special school knows our name now and therye all great Kids.

anyways congratulations on your efforts and best of luck. it must have put a big smile on your face bigger than any dream fish could ever bring. well done and hope andy matures into a great person and a great fisherman!!!

cheers pk

Edited April 17, 2006 by pk-fishn

[mottyman]

Hi all,

We now have an update on our situation. Please see beginning of post.

Cheers

David.

[AR4EVA]

Hi all,

We now have an update on our situation. Please see beginning of post.

Cheers

David.

who made the diagnosis? Dr Jane Law from North Ryde?

[Lewis]

G,day Mottyman.

Can I just say how deeply touched I was by your remarcable story, you do, as others have mentioned, restore ones faith in humanity. It brought to light just how lucky my wife Donna ( also a registered nurse, and also an incredibly special person ) and myself are to have two healthy children of our own.

Although our son, the younger of the two has had a reasonably tough time with his health, with four surgeries, and being pre-diagnosed with Epilepsy, we thought that we had had it tough, but our trials do not compare what you and your incredibly special wife Bec have had to, and are still to endure, and we feel quite humbled, and congratulate you both.

Can I also say that your story has also opened my eyes to the fact that we cannot take what we have for granted and that we should love, treasure and spend as much quality time with our children for as long as humanly possible, and for that I thank you.

We would just like to wish you and your beautifull family all the very best.

Cheers

[mottyman]

who made the diagnosis? Dr Jane Law from North Ryde?

G'day,

No... it was a combination of two Paedatricians... Andy's doctor (Dr Alison Poulton here in Penrith) and a specialst at Nepean Hosptial... Dr Besse ..... (can't remember her last name now...).

Cheers,

David.

G,day Mottyman.

Can I just say how deeply touched I was by your remarcable story, you do, as others have mentioned, restore ones faith in humanity. It brought to light just how lucky my wife Donna ( also a registered nurse, and also an incredibly special person ) and myself are to have two healthy children of our own.

Although our son, the younger of the two has had a reasonably tough time with his health, with four surgeries, and being pre-diagnosed with Epilepsy, we thought that we had had it tough, but our trials do not compare what you and your incredibly special wife Bec have had to, and are still to endure, and we feel quite humbled, and congratulate you both.

Can I also say that your story has also opened my eyes to the fact that we cannot take what we have for granted and that we should love, treasure and spend as much quality time with our children for as long as humanly possible, and for that I thank you.

We would just like to wish you and your beautifull family all the very best.

Cheers

G'day mate....

That's very, very kind of you... Thanks...

Epilepsy is no small thing to deal with so don't sell yourself short, especially with operations thrown in. I'm sure you guys do it tough at times as well but by the sounds are doing a great job.

Thanks again.

David.

[roosterman]

hi mottyman, this posts made me .. i feel for you mate as my youngest of 3 at 11mths has all to frequent visits to randwick childrens hospital to see the neurosurgeon and eye specialist.. hes eventually going to be fine [we hope]but is very stressfull and worrying at times and we sometimes question am i at fault for this.... my heart goes out to you and your family and preyers for the long rocky jurney ahead to hopefully as normal a life as can be had.. we can be guilty of taking good health and family for granted and things like this can shock us into realizing what a wonderful thing parenting and being a family really is about... in sicknes and in health... it really made me smile to read of your success with the new treatment and its true that we are not in this alone,so to speak.. there is much power in people helping people by sharing their trials and tribulations and so many others take the easy way out with miss diagnosis of ADHD etc. its inspirational people like you and your wife donna that may help others try to see another alternative to make things better and hopefully start to see some light at the end of the tunnel.... anyway prayers and thoughts to you all....steve....

[arif]

Cogratulations on stickin to looking for something that will work, so many parents are intimidated by health professionals and do not question anything that is prescribed especially Ritalin, Thanks for the post and i am sure that you will inspire other parents to keep looking until they find the appropriate treatment which is rarely part of the first diagnosis. I work in disailities and kids with parents as dedicated as you grow into adults that can not only cope / function in society but can contribute very positively to society and have a great quality of life. You and your wife should be commended.

Arif