Are you a parent of a child with a disability?

Bridgette01 · 15-11-2011, 08:41 PM

How do you cope with the mental stress of dealing with your own child / children who are physically or mentally different from the vast majority of other children who are "normal"

I am hoping your experiences can help me deal with this rarely spoken about subject. Feel free to P.M. me as its not made public

GULL · 16-11-2011, 12:26 AM

I have son with Autism,his 11 now and does not really talk,i dont get to see him much as he lives in the states(utah) with my ex.So to make up for not seeing him much i employee staff ,5 now to get them out and about and to feel like they are doing there bit for the world and a couple of bucks to spend.Life is hard enough just being normal,lol if u can call people normal,thats a different threat to be talked about.

Zaxx · 16-11-2011, 12:43 AM

I'm no father.
I'm 18.
I however, have my share of a disability. Certainly nowhere near what others have to deal with.

Biggest thing that gripes me?
Is people viewing you differently..

I didn't answer your question..
But for me, what helps deal with those days where you just seem to get down..
Is when people don't stare.. when people just treat you like Joe Blow..

Because in the end.. that's all everyone is.

All the best mate.

Fev · 16-11-2011, 01:12 PM

My little brothers (now 20) got a few different things all in one. Mild autism, developmental delay, adhd, and he's missing a chromosome. In the womb he was choked by the umbilical chord which knotted which had a pretty bad effect as you can see.

He's sometimes hard to deal with, doesn't listen very well but he's friendly enough and can still function in society fine. He's got his quirks - likes to collect power cables/boards/wires for some reason. Remembers really random things and has an obsession with cats lol. Sometimes we do have to be hard on him with simple things so they sink in, you can't keep doing everything for them all the time - of course thats depending on the disability and how severe it is.

He's been to a special needs school and now goes to TAFE.

Basically I treat him just like I would anyone else. Of course I understand he has a few problems and make allowances for that but if you treat them any differently to others they're either going to get used to being treated differently and expect that same treatment all the time.

Cam · 16-11-2011, 01:42 PM

Quote:

Originally Posted by Bridgette01

How do you cope with the mental stress of dealing with your own child / children who are physically or mentally different from the vast majority of other children who are "normal"

I am hoping your experiences can help me deal with this rarely spoken about subject. Feel free to P.M. me as its not made public

WOW, I nearly posted a very similar thread just last night

I have a 3 year old autistic boy..

How do I cope? Who said that I cope?!?!

Honestly, being a parent of a child with a disability is not easy, in my circumstances adding that I am a single parent as well as working full time (and 1.3 hours travel to work each way) means that every day is massively draining, especially working in a high stress job..

To be completely honest I cope thanks to a very good counselor!

I think the biggest thing that changed my outlook, was after watching a video on autism, and it said something along the lines of "Remember this is happening to me, not you. Without your support, my chances of successful self-reliant adulthood are slim"
It is something i tell myself every day, it is my little boy that lives with the frustration of the world not understanding him! HE is the one that struggles to understand WHY his normal is not understood by the world..
(Video here: http://www.youtube.com/watch?v=AbeyI...eature=related )

If I can give any advice, it's to focus on the fact that they are the one living with the disability, and not yourself.. By all means seek a counselor, as talking openly, and having a chance to vent stress, anger, etc is very healthy and has made me understand my own thought process a lot better.

Also, Ensuring that you have some "down time" and "you time" is also very important, and is something that I personally have great difficulty with due to there simply not being enough hours in the day! Exercise helps too..

Hope it helps, kind of hard giving advice without knowing what disability you're child has. PM if you like,

Dr Jekkyl · 16-11-2011, 02:49 PM

I have a 3 yr old son.

My wife and I are fortunate enough that he is happy and healthy.

Yet at times we feel as though we are struggling.

I cannot fathom what it would be like to be the parent of a child with any kind of disability.

I have the utmost admiration and respect for anybody in this situation.

bossgtp · 16-11-2011, 04:09 PM

I Have a 4 month old boy who is healthy but I have a hard time coping sometimes and just have to tell myself that we were fortunate he was born healthy and can only admire the people that raise children with disabilities.

JoelBluexh · 16-11-2011, 04:17 PM

Hi my older brother (25) had mild autism, mild cerebral palsy and a speech impairment. like Fevs brother he was also chocked by his umbilical cord and came out blue.

at times he's hard to deal with and sometimes wont listen at all and will relentlessly nag and annoy my mum to try and get his way/things we wants, and its affecting my mum pretty hard atm. other then that hes good. everyday he goes to "work" with other people with special needs and thats helps a fair bit and twice a week a carer will come and take him places to do things eg bowling, shopping stuff like that.

during primary school, people just didnt know what to do around him and stare or point or make stupid remarks also most kids would pick on him and tease him. so in most cases i was acting like his big brother. but after primary school mum sent him to Verney road(speacial needs high school here in Shepparton) and he coped fine and loved it.

after he left there at 21 hes been going and attending shepp access(a organisation for people with special needs) "work"

one thing i would say about someone with autism is that there always in there own sort of world and will see and here things differently to us.

if you ever need any advice or help just PM me and i can try help you or ill can give you my mums number.

Joel

Jason[98.EL] · 16-11-2011, 05:48 PM

not myself but my sister has a ripper of a handicapped child

bryces story

the above link is his story from the day he was born to today

Jason

MYVYSS · 16-11-2011, 06:23 PM

I have a 12 year old with mild intellectual disabilities, what he lacks in "educational normailty" reading, writing he more than makes up with pure love, expressing his emotions and joy he brings to the house. Sure we have our moments wild outburst, his own frustration at not being able to do some things. And at times a issue not understanding about his own strength and personal space. (he is 5 foot 10 already). Sure its tough, but we show and support him with love and encouragement everyday, We pay thru the nose for extra services and support and try to provide him with every opportunity to be happy.

To us he is normal, as we have never known him to be any other way...

Bridgette01 · 16-11-2011, 06:37 PM

Wow, I cant believe the response to this thread but even more surprising is the support you guys have offered. I am genuinely touched, I have even shed a tear reading every ones responses.

I am married and have a beautiful 6 year old boy. My son is on "the spectrum" of autism, developmental delay/learning issues and he has a hospital file as thick as an encyclopedia. I normally cant talk about his issues as I will break down and cry and feel very low and depressed. We (my son and I) are very lucky that my wife is mentally tough and can handle 99% of any problem or situation. However, the stress has caught up with her as well over time. When things are bad at home, it puts our relationship under huge pressure. I wonder what the divorce rate is for parents with a disabled child, its got to be huge and I can see why. During these tough times, I find it easy to feel sorry for my self, dealing with all the stress and tears and pain the 3 of us feel. I am also worried sick about my sons future, specially all the teasing which will come shortly at school, we all know how brutal kids can be. One day at a time I guess, one day at a time...Thanks for listening and again, thanks for your responses. They are helping me deal with my issues, thank you.

Cam · 16-11-2011, 07:46 PM

Quote:

Originally Posted by Bridgette01

Wow, I cant believe the response to this thread but even more surprising is the support you guys have offered. I am genuinely touched, I have even shed a tear reading every ones responses.

I am married and have a beautiful 6 year old boy. My son is on "the spectrum" of autism, developmental delay/learning issues and he has a hospital file as thick as an encyclopedia. I normally cant talk about his issues as I will break down and cry and feel very low and depressed. We (my son and I) are very lucky that my wife is mentally tough and can handle 99% of any problem or situation. However, the stress has caught up with her as well over time. When things are bad at home, it puts our relationship under huge pressure. I wonder what the divorce rate is for parents with a disabled child, its got to be huge and I can see why. During these tough times, I find it easy to feel sorry for my self, dealing with all the stress and tears and pain the 3 of us feel. I am also worried sick about my sons future, specially all the teasing which will come shortly at school, we all know how brutal kids can be. One day at a time I guess, one day at a time...Thanks for listening and again, thanks for your responses. They are helping me deal with my issues, thank you.

Please PM me if you'd like to chat further, despite currently working in IT I studied a diploma in childrens services, and during that time I dealt with several ASD children of varying abilities, and have also done a great deal of reading on ASD children. Would be more then happy to chat at some stage if you wish, I know you're pain only too well..

Cheers
Cam

prydey · 16-11-2011, 08:09 PM

Quote:

Originally Posted by Cam

I think the biggest thing that changed my outlook, was after watching a video on autism, and it said something along the lines of "Remember this is happening to me, not you. Without your support, my chances of successful self-reliant adulthood are slim"
It is something i tell myself every day, it is my little boy that lives with the frustration of the world not understanding him! HE is the one that struggles to understand WHY his normal is not understood by the world..
(Video here: http://www.youtube.com/watch?v=AbeyI...eature=related )

If I can give any advice, it's to focus on the fact that they are the one living with the disability, and not yourself..

thats great advice cam. even without meaning to, we can be rather selfish at times so its always important to have a dose of reality and perspective from time to time.

my eldest (my wife and i have 2 girls, 3 and 11) was declared type 1 diabetic when she was 5. thanks to modern medicine, this is no longer a disability in the true sense of the word. thanks to technology my daughter leads a very 'normal' life.

whilst this isn't really on the same scale as autism, i often find that i don't treat her any differently to anyone else. while this may be a good thing for her, it never hurts to have a reality check and realise how ciritical your support is for them.

uranium_death · 16-11-2011, 11:04 PM

About 10 years ago the behavioural issues with my brother exploded.
He was always developmentally behind (I am his twin - and I'm apparently "normal", though I still dispute that to this day...that being both points) and has a recognised learning disability, but he also has a bad temper. A very bad temper.

We had some bad times and our coping has been through exposure and basically knowing what triggers the behavioural episodes. Sometimes they are unavoidable.

From a personal point of view, it exploded when I was doing my Year 12, so it was a stressful time.
As time has gone on and I have had the means to be independent (working full time and having a car and my own computer is brillaint) and disassociating myself from his issues has been my coping mechanism.

My parents (well, my old man actually) have sent him on courses every Wednesday at Holmesglen TAFE to learn about life skills and looking after himself.

This is in preparation for my parents buying him a house and him living a monitored yet semi-independent life.

My parents carry a burden still and their freedom is very restricted currently, but we have all learned.

Personally, I've had anxiety for much of my life and it has really become quite bad this year - with the last two months being a difficult time.

A lot of how we cope is through experience.
During the bad times, having a support network is crucial. Even if they aren't directly aware or we cannot share everything, having the security blanket there is a comfort.

The key is not to bottle it in. It does feel good to talk about things - ignore those damned fools that say it isn't manly to share your issues - that's crap.

That is why I am posting this. I hope that it helps somebody in some way, sometime.

pottery beige · 17-11-2011, 04:16 PM

pinched this off fb...

Children with disabilities are like butterflies with broken wings. They're just as beautiful as other children, but they need a little help to spread their wings.

randel · 18-11-2011, 12:09 AM

Quote:

Originally Posted by pottery beige

Children with disabilities are like butterflies with broken wings. They're just as beautiful as other children, but they need a little help to spread their wings.

thats awesome

Bridgette01 · 18-11-2011, 04:54 PM

Quote:

Originally Posted by Bridgette01

Wow, I cant believe the response to this thread but even more surprising is the support you guys have offered. I am genuinely touched, I have even shed a tear reading every ones responses.

I am married and have a beautiful 6 year old boy. My son is on "the spectrum" of autism, developmental delay/learning issues and he has a hospital file as thick as an encyclopedia. I normally cant talk about his issues as I will break down and cry and feel very low and depressed. We (my son and I) are very lucky that my wife is mentally tough and can handle 99% of any problem or situation. However, the stress has caught up with her as well over time. When things are bad at home, it puts our relationship under huge pressure. I wonder what the divorce rate is for parents with a disabled child, its got to be huge and I can see why. During these tough times, I find it easy to feel sorry for my self, dealing with all the stress and tears and pain the 3 of us feel. I am also worried sick about my sons future, specially all the teasing which will come shortly at school, we all know how brutal kids can be. One day at a time I guess, one day at a time...Thanks for listening and again, thanks for your responses. They are helping me deal with my issues, thank you.

I failed to mention that my son battles chronic constipation and continence issues as well. He was born with a 1 in 10 000 condition and was operated on the day after his birth and had 4 operations since then. It certainly was not the fairy tale birth everyone hopes for and expects. There were no relatives crowding round the bed saying how cute he was because he was in the ICU unit at the Royal Children Hospital with in 3 hours of birth.

In one sense we feel very lucky to have a huge number of specialists and surgeons involved to get us where we are today. With out them, my son wouldn't be here today (and my wife for that matter) and we wouldn't be in as good shape (all things considered) as we are today

It feels good to write all of this down, its something I have never done. If I get the courage, one day, I might write down my entire story, relive all those many, many demons

Tonz · 18-11-2011, 08:49 PM

WE have 2 beautiful girls now both married with their own anlke biters. Their bro who is now 24 was not expected to be born alive, then first 24 hours then 2 weeks then 3 months then he'll never walk or talk. Bugger can now run faster than me (but thats not saying much) Yaks like s steam train although have to listen carefully
First 9 month we couldnt even diagnose what was wrong .
A valve was screwed into his skull supposedly for 3 days to test pressure on the brain. 20 minutes after it was in he went into surgury. The valve ruptured itself the pressure was so great.
He has still got his limits but loves teaching me about computer that I have no idea about.
Cant hold a note musucally to bless himself but god the number of musicals he does know off by heart it just crazy. I cant even remem,ber the bloody names.

How do we manage, slow deep breaths, make the very best of what you do have, be grateful that you at least have a 'live ' kid (and I appologise to those who may have lost ones at very young age)
Learn to laugh at the simple things, find a decent doc/specalist and suck them for information. I beleive if you show a REAL interest in your childs 'so called disability' then the specalists will be more willing.
We ALL have disabilities hell look at Gillard, Abbot and the green stiff . shoit cant call them normal!!!!!

charles_wif_xf · 24-11-2011, 06:50 PM

I had no idea mate. I can't even begin to imagine what its like going through what you and your wife are experiencing with your boy.

I can't offer anything other than my support and my admiration for how you both cope. As the other posters have mentioned, a counselor will help immensely as they are essentially a third party that can offer objective advice.

outside · 25-11-2011, 06:24 PM

we have a son with high functioning autism
i could write a book on the things we have done to get him to where he is
he starts high next year in a multi-categorical class with other kids like him
he is so looking forward to going
a more loving son you wouldnt find

Bridgette01 · 25-11-2011, 07:16 PM

Quote:

Originally Posted by Jason[98.EL]

not myself but my sister has a ripper of a handicapped child

bryces story

the above link is his story from the day he was born to today

Jason

Wow, this was tough to read, so many thing I can relate to. The love a parent has for their child is one thing, the love a parent has for their child when their life is in the balance is X10.

The many hours I have spent in waiting rooms while my son was under the knife was a stress I would wish upon no one. Reading this story brought it all back, especially the constant beeping from the ICU machines...just got a cold shiver thinking about it. All the tubes, feeling completely helpless, putting your child's life in the hands of strangers....God Bless the Royal Childrens Hospital.

Fingers crossed for all involved in this story

EB_5.0_WAGON · 27-11-2011, 01:01 AM

Quote:

Originally Posted by Bridgette01

My son is on "the spectrum" of autism, developmental delay/learning issues

I have 2 step sons and both of them have autistic issues.
The eldest has the same as your son(a part of the spectrum) and the youngest was diagnosed with Aspergers Syndrome. so I know what you are going through.

Quote:

Originally Posted by Bridgette01

I am also worried sick about my sons future, specially all the teasing which will come shortly at school, we all know how brutal kids can be. One day at a time I guess, one day at a time...Thanks for listening and again, thanks for your responses. They are helping me deal with my issues, thank you.

Take it from someone with 2 kids in the same boat. Kids now days are NOT as bad as you think. This is due to the teachers and school policies teaching "normal" kids the disabled kids are just like them but with issues.
Both of my kids go to a normal school not a special school.
My biggest fear with my boys was the teasing about being slow or dumb or whatever but i can say that it hasnt happened yet.
With you concerns about the school do some research into which schools in your area have a good SEU( Special Ed Unit) like we did and we are in a great school.

I hope some of what i have told you helps releive some of the stress I know you are under as I have been there myself.

Adrian

Spudz27 · 27-11-2011, 01:51 AM

I have the utmost admiration for you guys raising children with special needs. Makes me realise my 2yr old boy could be worse. My boy is an absolute nightmare behaviour wise, but it could be worse after reading the stories here.

**SSD-85** · 27-11-2011, 02:05 AM

My son has been diagnosed with ASD (Autistic Spectrum Disorder) at 4 years old. Im yet to determine whether I have Aspergers Syndrome, but its irrelevant to the grand scheme of things really.

I dont consider it a disorder/disability. Parents of children with ASD will understand what im saying.

Fled74 · 28-11-2011, 01:56 PM

My youngest daughter Christa is 18 months old and has Down Syndrome.
DS kids do achieve the milestones of other kids, but at a slightly slower pace.

She doesn't walk or talk yet, but locomotion and communication are not a problem for her, as she easily lets us know what she wants/needs, and easily gets to where she wants to go. Not much different from a "normal" 10-month-old baby. People always comment that she doesn't act like she has DS.

At 3 months of age, she underwent open heart surgery to patch 2 holes in her heart (I posted about this in September of last year). All went well and she flourished.

Last month we were dealt another blow, with a routine blood test showing that she had the early stages of leukaemia. She was outwardly healthy (if a little anaemic) and it was a shock to everyone.

She's just finished Stage 1 of chemotherapy, and her latest bone marrow sample showed no cancer cells - they appear to be in remission. Apparently Down Syndrome kids respond very well to chemo.
So far it's looking very good, but she is immuno-compromised (she can't fight infections). She also has 6 more chemo treatments to go. Stage 2 is set to go in a few days, in the brand new Royal Children's Hospital.

Our little fighter has gone through more in her 18 months of life than many people do in a lifetime, and she always has a smile for everybody.

One thing I always tell people is to "see the person and not the disability." Their conditions don't make them any less of a person, or less capable of feeling joy, hurt, sorrow or love.

TheSneakiness · 28-11-2011, 03:22 PM

I have an 18 month old boy (with the attitude and behaviour to match) and wouldn't know what to do if I had to deal with the things posted in here. You guys deserve praise and keep your heads held high.

Bridgette01 · 28-11-2011, 04:19 PM

Quote:

Originally Posted by Fled74

My youngest daughter Christa is 18 months old and has Down Syndrome.
DS kids do achieve the milestones of other kids, but at a slightly slower pace.

She doesn't walk or talk yet, but locomotion and communication are not a problem for her, as she easily lets us know what she wants/needs, and easily gets to where she wants to go. Not much different from a "normal" 10-month-old baby. People always comment that she doesn't act like she has DS.

At 3 months of age, she underwent open heart surgery to patch 2 holes in her heart (I posted about this in September of last year). All went well and she flourished.

Last month we were dealt another blow, with a routine blood test showing that she had the early stages of leukaemia. She was outwardly healthy (if a little anaemic) and it was a shock to everyone.

She's just finished Stage 1 of chemotherapy, and her latest bone marrow sample showed no cancer cells - they appear to be in remission. Apparently Down Syndrome kids respond very well to chemo.
So far it's looking very good, but she is immuno-compromised (she can't fight infections). She also has 6 more chemo treatments to go. Stage 2 is set to go in a few days, in the brand new Royal Children's Hospital.

Our little fighter has gone through more in her 18 months of life than many people do in a lifetime, and she always has a smile for everybody.

One thing I always tell people is to "see the person and not the disability." Their conditions don't make them any less of a person, or less capable of feeling joy, hurt, sorrow or love.

Our hearts go out to you, your daughter and all of your family. Difficult times like this take its toll on everyone involved, friends and family and we (my family family and I) found ourselves doing things we never thought we were capable of, some good, some not so good. During tough times, we always reinforce that everything will sort its self out and that we will ALWAYS be by their side, no matter what. But maybe most important of all (to us) we tell our son just how lucky we are to have a beautiful son, no matter what the circumstances.

Bridgette01 · 28-11-2011, 04:25 PM

Again, I would like to thank every one who has contributed to this thread and a special thanks to those offering their time and support to me. The A.F.F community, I am very impressed

Cam · 28-11-2011, 05:57 PM

For Queenslanders with chidren on the Autism spectrum (whether it be aspergers, high functioning autism or autism) I can really recommend the assistance of Autism Queensland. As well as Autism Spectrum Australia (Aspect). Also for those after specialized care for pre school aged children, AEIOU are great.. But your whild does have to be officially diagnosed..

http://www.autismspectrum.org.au/
http://aeiou.org.au/
www.autismqld.com.au/

Unfortunately the Autism Spectrum is VERY broad. i.e. I have a friend with a 9 year old who has the intellect of a 2yr 8m old, yet she receives the same funding I do with my son with high functioning autism..But those references will hopefully help someone!

Great to see others in the AFF community coming out and speaking about these kinds of things!

Bridgette01 · 28-11-2011, 06:49 PM

Scary to think, not too many years ago there was little funding, little specialised care. Children with learning / social disabilities would BATTLE their way through the school system. We have come a long way since then