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brandy
03-Jul-09, 12:26
just out of curiosity.. is there any other orgers out there with autistic children?
been thinking about it a lot today..
started watching videos on youtube and ended up just having a good cry.
as some of you may know. ben was diagnosed with autism at the begining of June.
and at the time it was such a relief just to know.
you know kinda like. finally, now i know why all this has been happening!
why he does the things he does...
i was really upbeat and happier , thinking now we know which way the wind blows.. we cant work with this... we can get things started on his help.
but today im just down, thinking about everything...

telfordstar
03-Jul-09, 14:07
My son has Adhd and I sometimes get a little down over it all as it can be very hard work with him sometimes. I think I know all there is on the disorder and am always keeping my eye out on ways to help him. He was also tested for autism but dosnt have it although it is verycommon for kids with ADHD to have autism as well. There isn't a support group up here for ADHD which is a real shame as there are a few kids in county who have the disorder.

Tilly Teckel
03-Jul-09, 14:27
I feel for you, all us mums want is for our child to be happy and healthy. My son does not have Autism or any thing like it but I have spent many years working with children and adults with the disorder and know what a challenge it can be. However, I have found it can also be fascinating, learning to understand life through the eyes of a person who sees things in a totally different way to you. I guess, as with everything, just take it one day at a time and, as you have done, speak up when you're feeling the pressure.

It's sad that there are no support groups for you - maybe one could be organised through the forum? I would be interested in lending a hand on a voluntary basis if need be... Just a thought :grin:

cuddlepop
03-Jul-09, 14:28
My daughter is 18 and she has Asperger's.
It wasnt until she was 9 that she was diagnosed and its been tough.:~(

Last week we had out transition meeting as she know no longer "belongs" to children services but Adult services......which is a joke because they arent any.:(

All I can say Brandy is never stop fighting for what is rightfully your childs quality of life,no one else will.

sassylass
03-Jul-09, 16:35
Read and learn all you can about autism. Your son is young and with proper help he can make great strides.

Amy-Winehouse
03-Jul-09, 17:05
My son tyler was diagnosed with autism in november last year he is 3 and a half years old, He is a beautiful and very special child and very bright i used to get moments when i felt the world was against me but not anymore. You have to stay positive!! Yes it,s hard when you feel your child isnt getting the help they need but you can change that.

I feel my son was given to me for a reason and i know i can with the help of family and friends make a big difference in his life. I have been researching autism for about a year im not an expert i dont think any one ever will be autism is far to complex and affects each child differently.

There are lots of programmes that can make such a difference you just have to be able to take the knock backs your gonna get along the way ie, regarding funding it aint easy but it,s doable

Chin up your not alone there are thousands of parents like you if you need any advice im happy to help.

telfordstar
03-Jul-09, 17:12
I think as well that any child with any kind of needs comes with a stigma attached. I have been fighting hard with my sons school to get help with him making and keeping friends and generally doing well in class it has taken me 3 years but finally u am getting somewhere.

My son is very outcast by alot of kids in his school which to me is their loss. My son a a fantastic caring boy and although can get a wee bit high is never violent just finds it hard to calm down.

I agree fully with amy winehouse, I am blessed with my son and wouldn't change him for all the t in china :)

Amy-Winehouse
03-Jul-09, 17:28
I think as well that any child with any kind of needs comes with a stigma attached. I have been fighting hard with my sons school to get help with him making and keeping friends and generally doing well in class it has taken me 3 years but finally u am getting somewhere.

My son is very outcast by alot of kids in his school which to me is their loss. My son a a fantastic caring boy and although can get a wee bit high is never violent just finds it hard to calm down.

I agree fully with amy winehouse, I am blessed with my son and wouldn't change him for all the t in china :)
Yes very true about the stigma but this label these kids are given doesnt define them as a person some people should look beyond the name and look at what these children have to offer, Henery ford was autistic and look what he did !!

poppett
03-Jul-09, 17:33
My great nephew has just had his "official" autistic diagnosis after five years of knowing something was wrong, just not quite knowing what, and how to deal with it. His parents are fantastic, fighting for his rights and he is now in mainstream school with one to one support. The support agencies keep shifting the goalposts, but we just keep battling on.

When he was diagnosed the assessor did say from the way his father was leaping about and fidgety if the condition had had a name forty years ago he would have been autistic too.

Wee man is brilliant with music and numbers, and words are coming along too, so battle on is all I can suggest.

telfordstar
03-Jul-09, 17:36
Yes very true about the stigma but this label these kids are given doesnt define them as a person some people should look beyond the name and look at what these children have to offer, Henery ford was autistic and look what he did !!

it's east to say but that's not the way of the world unfortunatly oraybe it would be a better place.

cjb
03-Jul-09, 18:13
Hi Brandy
I've sent you a pm:D

chaz
03-Jul-09, 18:35
Hi my sons autistic he was diagnosed at 3 and is now 14,it can get pretty tough but he is a special part of my life.

Stefan
03-Jul-09, 20:59
Our son has been on the waiting list in england to be diagnosed for well over a year. It took two years to even get him on a waiting list.
We are moving to Caithness next month and we have been informed that he will betaken off the waiting list in england.
Does anybody know what i need to do to get him on a waiting list up here?

poppett
03-Jul-09, 22:44
Your new GP in Caithness would need to re-refer, unless your current GP would write a letter to your new GP to try to hurry things along. As soon as you know the re-referral has been done, phone the appointments secretary every month asking where on the list your son is, and which priority he has been given. If he is not prioritised as urgent you will need to go back to your new GP and ask him to upgrade the referral priority.

Have you a temporary GP registration in Caithness until your move is permanent? The GP here doesn`t get all your notes until you transfer permanently, but it gives you a chance to get to know the doctors in the practice.

oldmarine
04-Jul-09, 04:01
Autism in a child can be difficult for any parent; However, that child needs even more love than a normal child.

stiggy
04-Jul-09, 10:07
We have a child with Autism who is a very loving affectionate child. Who wants to make friends with everyone but gets shund alot of the time and can't understand why. Consequently she spends alot of time with us or playing by herself.

We know that Autism is hard to understand as we are still getting our own heads round it and get really low at times. People say we feel more pain and upset for her than she does, but we just want others to give her a break include her in things.

brandy
04-Jul-09, 10:41
thanks guys... its really nice to hear from other people...
some days are better than others...
yesterday i was just feeling very weepy and down.
ben is a joy most times, hes a very happy and well adjusted little boy.
have lots of support for him and he started ceyac this last semester and will be going into p1 at ceyac after the holidays. ive a whole folder with info the dr. gave me.
just sometimes i just feel like im sick and tired of all the research and reading.. and would just like to talk to someone that actually is going thru or been thru what is going on in our lives.
its all well and good to know and understand what is going on and what to expect.. but still feel completly alone in the world.

Vistravi
04-Jul-09, 11:07
thanks guys... its really nice to hear from other people...
some days are better than others...
yesterday i was just feeling very weepy and down.
ben is a joy most times, hes a very happy and well adjusted little boy.
have lots of support for him and he started ceyac this last semester and will be going into p1 at ceyac after the holidays. ive a whole folder with info the dr. gave me.
just sometimes i just feel like im sick and tired of all the research and reading.. and would just like to talk to someone that actually is going thru or been thru what is going on in our lives.
its all well and good to know and understand what is going on and what to expect.. but still feel completly alone in the world.

It may feel like you're alone sometimes brandy but a smile, a hug, a time when your son does something for the first time that he has been stuggling to do is times of joy. Children are the hardest people to work with(or the easiest for me), your own or other people's but it is so rewarding when you get a smile and a hug when they see you or just when they are chatting away telling you about something.

stekar
04-Jul-09, 16:43
We're 'lucky' to have two autistic children, and it is VERY hard.

Don't believe they were given to us for a reason, often wonder what we did wrong in life to get the hand we've been dealt.

balto
04-Jul-09, 18:57
do you know eading some of these replys meakes me realise how lucky i am, i have 4 healthy happy kids, and the oldest one at the moment is pushing all the boundries and it is proving difficult for me and her dad, but hopefully it is just teenage stuff and she will grow out of it, i applaude anyone with a child with special needs cant begin to imagine how hard it must be at times.

Wispy
04-Jul-09, 19:23
I am involvedwitha couple of charities and I'm sure I've heard them mention an autism support group in Wick. Sounds like you need to chat to others in the same position as yourself.

cjb
04-Jul-09, 19:49
This group meets in Wick, every second Thursday from 10-12, upstairs at the Pulteneytown People's Project. Anyone caring for someone with an autistic spectrum disorder is made really welcome, if they have a diagnosis or are currently going through the assessment process. Not just parents, but grans aunties and so on!
Coffee, cake, friendship and good advice usually available!!!
Unfortunately we can't meet through the holidays as we don't have respite but we will be meeting the first Thursday after the schools go back.
The group also has a mobile phone for people to contact. It should be in the info pack you get from the Community Paediatrician, but here it is for anyone who can't find it.
07923477002
Someone will phone you back, even though it might take a wee while, we are all mums with care commitments, who share the phone around to offer a contact.
Unfortunately we don't currently have meetings in Thurso but hope we might start these up again on a monthly basis in the evenings for folk who work.
We can help out with transport or a help with child care costs if you have under 5's
Please get in touch we would love to welcome new members.:Razz

telfordstar
04-Jul-09, 20:39
This group meets in Wick, every second Thursday from 10-12, upstairs at the Pulteneytown People's Project. Anyone caring for someone with an autistic spectrum disorder is made really welcome, if they have a diagnosis or are currently going through the assessment process. Not just parents, but grans aunties and so on!
Coffee, cake, friendship and good advice usually available!!!
Unfortunately we can't meet through the holidays as we don't have respite but we will be meeting the first Thursday after the schools go back.
The group also has a mobile phone for people to contact. It should be in the info pack you get from the Community Paediatrician, but here it is for anyone who can't find it.
07923477002
Someone will phone you back, even though it might take a wee while, we are all mums with care commitments, who share the phone around to offer a contact.
Unfortunately we don't currently have meetings in Thurso but hope we might start these up again on a monthly basis in the evenings for folk who work.
We can help out with transport or a help with child care costs if you have under 5's
Please get in touch we would love to welcome new members.:Razz


Thats great you have a support group it will help alot of parents, unfortunatly there isnt one up here for adhd which is a shame as there are a few kids in county who have the disorder. :(

Amy-Winehouse
05-Jul-09, 07:25
Thats great you have a support group it will help alot of parents, unfortunatly there isnt one up here for adhd which is a shame as there are a few kids in county who have the disorder. :(
Why dont you try starting one im sure there would be people willing to come and share there expereinces.

telfordstar
05-Jul-09, 09:47
Why dont you try starting one im sure there would be people willing to come and share there expereinces.


Id love to, to be honest but with a job and 3 kids it would be hard to fit in the time to organise 1 but would certinly attend one. So anyone who has an child with adhd feel free to get in touch and maybe something might come of it.

tootler
05-Jul-09, 19:18
Thanks, cjb, for posting about the Wick meetings. We did have meetings here in Thurso for a while but not recently. If there are parents on the Thurso side looking for support, pm me and we could see about getting regular meetings going here, too. Perhaps evenings would be better?

Try not to lose heart - there are many ups that come along with the downs of caring for a child with an ASD. Coffee with other parents is definitely the best way forward...;)

Even if you just go along to the Wick group once or twice, you'll be able to get some phone numbers to ring if you have any problems. Parents can really help each other and, especially within the education system, parents have much more power than they think.

Best of luck to all ASD parents on the org & never feel alone - there are plenty of us here!!:D

cuddlepop
06-Jul-09, 13:57
We're 'lucky' to have two autistic children, and it is VERY hard.

Don't believe they were given to us for a reason, often wonder what we did wrong in life to get the hand we've been dealt.

ifind it very hard to be positive when someone ask abouts experience of autism as we.vw had such a hard time.

I meet someone I know down here whose visiting folks,I told it like it is for kids like ours on Skye.....terrible,especially high school.

Hopefully by the time your child reaches high school HC will have got their act together and improved things.

Attitudes,especially negative ones from so called "professional" people might never change and those are the ones that cause the most damage.

I feel your pain Steaker and wish it could be different for you .A double doze of what I've just been through would have seen me sectioned,its that tough.:~(

Dont blame yourself,you.ve done nothing wrong.It now looks like the condition is linked to genetics and in my daughters case,her uncle and his son are both affected.

Its not a punishment but an "endurance" test on your "faith":D

I'm still here..

tootler
07-Jul-09, 09:55
We're so lucky here in Caithness, Cuddlepop - Thurso High is well resourced to meet the needs of ASD pupils, probably because we have twice the national average in the school population. It can be a very difficult condition to manage in a mainstream setting, especially in communities like ours where all of society's teenagers are educated in the same school and often in the same classroom. Bullying's been a big problem for some families here, I know. But I've found that the staff at THS are really doing their best - they're learning and they're willing to change to meet the individual needs of our individual children. It's very important to keep that line of communication open, even when it seems like you're banging your head off the wall...

Sometimes it really does feel like the fight never ends, and even I get tired, but I try to remember that actually everyone's just doing their best for my child, even if their best seems pretty poor. Most problems in the school stem from ignorance on the part of staff (and pupils), so be prepared to be your child's no. 1 advocate. No-one understands them better than you do, and no-one else really can understand them without living with them 24/7. (Not even "experts" like the ed. psych. or the specialist ASD teacher - YOU are the expert on your child.)

And Brandy - don't worry, you're on a sharp learning curve (we've all been there!) but you will come to understand your child much better now that you have a diagnosis. It's like having a viewing platform into the way he thinks & as the months and years pass by, you'll find yourself able to understand and appreciate him more and more. Beginning to understand how he thinks will give you patience and strength to deal with the challenges. There are loads of books in the libraries here on ASDs that might be helpful. Please do go along to the Wick support group - you'll find genuine support from the other parents there that will last and last. I also found the NAS "Help!" programme was very helpful. Best of luck & try to stay positive... x

ShelleyCowie
07-Jul-09, 10:16
I have been reading this thread since the start. I have not got an autistic child. But yesterday at work the most lovely girl came in with her mum and she was autistic. She was so caring, she interacted with me and my manager. She was so beautiful too.

She really cheered me up yesterday! It was a pleasure to meet her and im sure i will meet her again in the future. :Razz And i really look forward to it.

Also she had everybody in the shop sitting down around her. So it was good to get a seat for a second. I would have quite happily sat with her all day! :Razz She was lovely.

oldmarine
08-Jul-09, 14:21
Good testimonies from Tootler & Shelley on this thread. You folks in Thurso should be proud. It has been many years since I've been there, but it's good to read the two above comments.

katarina
08-Jul-09, 14:32
I ro have sent you a pm.

cuddlepop
08-Jul-09, 17:27
Throughout the whole of Scotland Thurso is regarded in autistic circles to have the best provision for our kids.

Your very lucky to live in such a beautiful location and have "central belt" provisions.:D

Thats why we wanted to move there but it just wasnt to be....:~(

Amy-Winehouse
09-Jul-09, 20:02
We're so lucky here in Caithness, Cuddlepop - Thurso High is well resourced to meet the needs of ASD pupils, probably because we have twice the national average in the school population. It can be a very difficult condition to manage in a mainstream setting, especially in communities like ours where all of society's teenagers are educated in the same school and often in the same classroom. Bullying's been a big problem for some families here, I know. But I've found that the staff at THS are really doing their best - they're learning and they're willing to change to meet the individual needs of our individual children. It's very important to keep that line of communication open, even when it seems like you're banging your head off the wall...

Sometimes it really does feel like the fight never ends, and even I get tired, but I try to remember that actually everyone's just doing their best for my child, even if their best seems pretty poor. Most problems in the school stem from ignorance on the part of staff (and pupils), so be prepared to be your child's no. 1 advocate. No-one understands them better than you do, and no-one else really can understand them without living with them 24/7. (Not even "experts" like the ed. psych. or the specialist ASD teacher - YOU are the expert on your child.)

And Brandy - don't worry, you're on a sharp learning curve (we've all been there!) but you will come to understand your child much better now that you have a diagnosis. It's like having a viewing platform into the way he thinks & as the months and years pass by, you'll find yourself able to understand and appreciate him more and more. Beginning to understand how he thinks will give you patience and strength to deal with the challenges. There are loads of books in the libraries here on ASDs that might be helpful. Please do go along to the Wick support group - you'll find genuine support from the other parents there that will last and last. I also found the NAS "Help!" programme was very helpful. Best of luck & try to stay positive... x
Excellent thread

Henrik7
10-Jul-09, 09:32
Our son has just been diagnosed with ADHD and they also suspect he has Autism but have told us he is too young for them to diagnose the Autism. It has certainly been hard and not knowing if he has Autism or not has been a worry for us.

telfordstar
10-Jul-09, 13:12
Our son has just been diagnosed with ADHD and they also suspect he has Autism but have told us he is too young for them to diagnose the Autism. It has certainly been hard and not knowing if he has Autism or not has been a worry for us.


My son has adhd and there is a very fine line between the adhd and autism which makes it a lenghly process to determin whether he has autism or not. my son was tested and found not to have autism abut the adhd is alot to deal with and i can guess if he had the two it would make things alot more complicated if he did.

If i can help in any way with the adhd just ask i have been reserching this for so long for my own son id be happy to help.

Henrik7
10-Jul-09, 15:03
Thank you so much thats very nice of you. Got to admit it has been very hard, mostly on my partner as she is pregnant and also has to deal with our daughter. I think the worst thing is you always feel it's your fault in some way.

telfordstar
10-Jul-09, 21:51
Thank you so much thats very nice of you. Got to admit it has been very hard, mostly on my partner as she is pregnant and also has to deal with our daughter. I think the worst thing is you always feel it's your fault in some way.

No problem at all I would be glad to help. Im no doctor but my son was diagnosed 4 years ago now so do know a little. I also have 2 other childeren and it is very hard at times.

We thought the same as well when our son was diagnosed but it really is just one of those things and nothing either of us could of done would of prevented it.

brandy
10-Jul-09, 22:56
i do that as well.. think, what did i do?
what could i have done differently?
whats wrong with me to have made him the way he is?
so many questions and no answers.
i became very angry, thinking i worked so hard to make sure they were healthy,
when i was preg. i did everything that i was suppose to.
as babies we did all the things we were suppose to.
and i looked around me and saw so many children with parents who didn't care.
children of drug users and people that should never have been allowed to breed, and i cried out in my mind.. why not their kids.. why mine?
i would never wish anything on those children, its just the pain of a grieving parent.
i mourn for all the things he will never have.
i try every day to look at the up side, to see what a special little boy he is.
to look past everything else, and see how happy he is..
but there are times that i sit in the quiet and cry, and wish things could be dif.

cuddlepop
10-Jul-09, 22:59
i do that as well.. think, what did i do?
what could i have done differently?
whats wrong with me to have made him the way he is?
so many questions and no answers.
i became very angry, thinking i worked so hard to make sure they were healthy,
when i was preg. i did everything that i was suppose to.
as babies we did all the things we were suppose to.
and i looked around me and saw so many children with parents who didn't care.
children of drug users and people that should never have been allowed to breed, and i cried out in my mind.. why not their kids.. why mine?
i would never wish anything on those children, its just the pain of a grieving parent.
i mourn for all the things he will never have.
i try every day to look at the up side, to see what a special little boy he is.
to look past everything else, and see how happy he is..
but there are times that i sit in the quiet and cry, and wish things could be dif.

Brandy I know its difficult but stop being so hard on yourself your actually griefing for the child you've just "lost".

brandy
10-Jul-09, 23:13
im not like that very often, in fact very rarely.. in fact the day we got his diagnosis i was happy as it was more a relief that now we had a reason for everything, and a way forward.
the day after was really hard and i had a really long cry when i sat there and thought.. oh my god my little boy is autistic.
most of the time i dont really think about it. we are so busy just getting on with life that it never comes up. its only when i see other kids his age doing the things he cant does it hit home thats he is dif. from other kids.
its only when im on my own, and sit and think about it that i mourn what i wanted him to have and be. i have no idea what the future holds.. but i know its a long journey and something that we have to do as a family. some days are better than others. even though ben only got his diagnosis on the 1st of June, he has been here for nearly 5 years. he has not changed since he was given a diagnosis, my perception of him hasn't changed. not really anything has changed.. except he will not be going into mainstream school, and to tell the truth im happy that he will be at ceyac as its a wonderful place and he loves it.

Amy-Winehouse
11-Jul-09, 00:07
I had just had a baby when my son was diganosed and yes it,s very hard to except at first but it,s happened and who knows why. But i dont for a second blame myself any more there was a time i used to wonder but if you start thinking like that it will drive you mad !!!

I for one believe the only way forward is to look for ways to help your child. Yes i agree a majority of the staff at the ceyac are very friendly and nice but what programmes are they running there that can bring your child forward? Early intervention is the only way forward and the most powerful tool in a autistic childs life is the parent!!! Yes i understand alot of you have other children and have jobs and ect ect but there are courses availble all over the uk that can help you help your child and i know we are all in the same boat as these course,s cost money but myself and my family have set up a charity shop initally to raise funds to help my son but we also want to help other parents ease the burden of how your going to pay for it .

I understand only to well how it feels when you see your child with other children and they seem like an outcast. Last year my son was a classic autistic didnt respond to his name stimmed all the time had terrible tantrums didnt speak no eye contact no social skills

Today my son says a range of words has brillant eye contact and interacts with alot more people than he ever has he also loves to cuddle and kiss he also attends a mainstream nursery group and loves it and the people who work there are fantastic and even the children there are brillant with my son and yes he still has alot of behaviours that are classed as not typical behaviour and to be honest i dont really care if people dont except this because he is who he is and he,s happy and we have a long jounery ahead of us but im prepared to take the ruff with the smooth because i will do everything in my power to ensure i can turn round in 20 years time and say to myself with no regrets I have done everything i could possibly do !!

stiggy
11-Jul-09, 01:23
I for one believe the only way forward is to look for ways to help your child. Yes i agree a majority of the staff at the ceyac are very friendly and nice but what programmes are they running there that can bring your child forward? Early intervention is the only way forward and the most powerful tool in a autistic childs life is the parent!!! Yes i understand alot of you have other children and have jobs and ect ect but there are courses availble all over the uk that can help you help your child and i know we are all in the same boat as these course,s cost money but myself and my family have set up a charity shop initally to raise funds to help my son but we also want to help other parents ease the burden of how your going to pay for it .


Our child has gone to CEYAC since she was in primary 2 originally 4 days a week, this year she will go into primary 7 and is down to 1 day. She had speech when she started but did not know how to interact with people outside of her immediate family. With the Excellent help and support of ALL the staff at CEYAC she is becoming a well adjusted child. We both work full time and would have struggled even more than we have without these wonderful people.

We find at times it can be the parents of Supposedly normal children that have no understanding and so exclude her from group activities.

Please give us all a break think how you would feel if your child was always the one standing on the side lines wanting to join in but not knowing how to ask because it feels like they are all talking a different language.

Amy-Winehouse
11-Jul-09, 09:30
Our child has gone to CEYAC since she was in primary 2 originally 4 days a week, this year she will go into primary 7 and is down to 1 day. She had speech when she started but did not know how to interact with people outside of her immediate family. With the Excellent help and support of ALL the staff at CEYAC she is becoming a well adjusted child. We both work full time and would have struggled even more than we have without these wonderful people.

We find at times it can be the parents of Supposedly normal children that have no understanding and so exclude her from group activities.

Please give us all a break think how you would feel if your child was always the one standing on the side lines wanting to join in but not knowing how to ask because it feels like they are all talking a different language.

Oh well thats brillant your daughter has had great progress but unfortunatley my son didnt have the same experience!! as all children are different with ASD and i didnt feel there was enough programmes running there it,s sadly all down to money and what they can afford to do which is why we started our charity shop to help other parents who want to run programmes from home.

Yes some people can be very rude and thats something thats there problem not our childrens!! iggnorance is bliss to some people sadly. But with my experence with the run of the mill children they have been great so far very patient and caring i know this wont always be the case but i will have to see how this affects me when the time comes which i worry about. But thats just part and parital of having a child with special needs it shouldnt be but untill some parents start educating themselves there aint much hope for there kids sadly.

brandy
11-Jul-09, 11:29
just out of curiosity what do you mean by run of the mill children?

Amy-Winehouse
11-Jul-09, 14:07
just out of curiosity what do you mean by run of the mill children?

A child with no difficulties i dont like to write normal as i dont think of my son as abnormal never have never will .

telfordstar
11-Jul-09, 14:19
I always find that in general (but more in teachers, sorry to any teachers reading this) people have a very specific mould that the majority of kids fit into ie perfect behavoiur, manners etc but then when one comes along with difficulites its a whole different ball game. Kids are by far the cruelest ever things that have been said to my son and the way he has been treated by other kids have hmade me break down in tears but fortunatly my son bounces back although his confidence is badly bashed.

Best of luch to you amy with all your fundraising its a great thing you are doing for your son. Unfortunalyly there are no such course in uk or abroad that my son would benifit from but like you in years to come i will know i tried my very best for him and be proud of myself for that.

Amy-Winehouse
11-Jul-09, 14:40
I always find that in general (but more in teachers, sorry to any teachers reading this) people have a very specific mould that the majority of kids fit into ie perfect behavoiur, manners etc but then when one comes along with difficulites its a whole different ball game. Kids are by far the cruelest ever things that have been said to my son and the way he has been treated by other kids have hmade me break down in tears but fortunatly my son bounces back although his confidence is badly bashed.

Best of luch to you amy with all your fundraising its a great thing you are doing for your son. Unfortunalyly there are no such course in uk or abroad that my son would benifit from but like you in years to come i will know i tried my very best for him and be proud of myself for that.

Yes i totally agree kids are cruel i had a terrible time at school because i was dyslexic and that is nothing compared to a child with autism!! I am sure the same will happen to my son at some point in his life but hopefully in years to come more people will be more aware of autism and they might stop and think first but who knows.

I understand what your saying about the programmes but i do think some are well worth a look. But saying that you know your son better than anyone so you know whats best for him. I hope for your sons sake these children see what they are doing to him as theres nothing harder in the world for a child than bully,s especially if you have a different insight into life than what they have i wish i could hit the bully,s for him :mad:

telfordstar
11-Jul-09, 14:53
Yes i totally agree kids are cruel i had a terrible time at school because i was dyslexic and that is nothing compared to a child with autism!! I am sure the same will happen to my son at some point in his life but hopefully in years to come more people will be more aware of autism and they might stop and think first but who knows.

I understand what your saying about the programmes but i do think some are well worth a look. But saying that you know your son better than anyone so you know whats best for him. I hope for your sons sake these children see what they are doing to him as theres nothing harder in the world for a child than bully,s especially if you have a different insight into life than what they have i wish i could hit the bully,s for him :mad:

I have looked but with the way it is a chemical malfunction in the brain unfortunally courses dosnt help, medication and diet are the best option but rest assured that if there was a course he would be there.

I totally understand about the bullies and as a person i find it very hard to hold my tounge not for the kids mind you for parents as well who can sometimes be just as nasty as there child.

Amy-Winehouse
11-Jul-09, 16:10
I have looked but with the way it is a chemical malfunction in the brain unfortunally courses dosnt help, medication and diet are the best option but rest assured that if there was a course he would be there.

I totally understand about the bullies and as a person i find it very hard to hold my tounge not for the kids mind you for parents as well who can sometimes be just as nasty as there child.


The diet has helped my son alot thank god for that. wish you and your son all the best for the future.

Vistravi
11-Jul-09, 18:10
Chillden are wonderful and all beautiful in their own uinique way.
Each one brings joy and wonder into the world as we try to stay one step ahead of them only to be put back a few when they reveal something.
Children with difficulties are extra special as they need us more. To you parents of children with such difficulties you are doing a super job and only someone strong can be there for their child with these dificulties. But its ok to feel weak and need help.

Amy-Winehouse
11-Jul-09, 21:02
Chillden are wonderful and all beautiful in their own uinique way.
Each one brings joy and wonder into the world as we try to stay one step ahead of them only to be put back a few when they reveal something.
Children with difficulties are extra special as they need us more. To you parents of children with such difficulties you are doing a super job and only someone strong can be there for their child with these dificulties. But its ok to feel weak and need help.
What a lovely uplifting thread

tootler
11-Jul-09, 22:53
Wow, there are some really great parents on this thread - give yourselves a pat on the back! Sometimes challenges bring out the best in us...;)

For those of you worrying about the future for your ASD diagnosed children, it's worth having a look at this site:

http://www.arghighland.co.uk/index.html

Autism Rights Group Highland is a voluntary organisation run entirely by adults who are on the autistic spectrum. Their aims include helping people to understand how autistic individuals perceive the world and educate people about autistic strengths. Some of the ARGH campaigners are parents themselves who only received a diagnosis when their child was identified at school as having an ASD. Others are young adults who have grown up always knowing they are autistic. Within the group you will find intelligent, well-educated, passionate people - all with a diagnosis of ASD. (Some are autistic, some have Asperger's.) I know that none of them have it easy, but I'm also sure that every one of them has strengths and talents and lots to give to society.

So don't write off the future for your child, Brandy. Autistic individuals develop differently from "neuro-typical" children, it's true, but they DO develop with plenty of encouragement and love. Just now, your wee boy may be fixated with Thomas the Tank Engine, but it's very possible that in years to come, he'll become the engineer who is fixated with finding a way for us all to survive on the moon, or the scientist fixated with finding a cure for cancer. And with the tenacity of his autistic mind, he's actually more likely to succeed in these challenges than someone with a neuro-typical mind. He won't be distracted if that's what he's decided to do - as parents we see that every day.

As a society we NEED autistic minds. They see things differently and so find new solutions that a sheep like myself can't even begin to imagine. They dig their heels in (boy, as parents do we know that?!) but that stubborn streak can be developed into the tenacity required to succeed in their chosen field. The developed autistic mind is well suited to engineering, computing, science, and there are also many creative autistic souls out there excelling in the fields of art, music and writing.

It's tough. There's no doubting that. But I do believe it's worth it. See the best in your child, keep your expectations high, accept that they will never be "ordinary" and cherish the positives that make them "extraordinary".

At school they may often seem to be behind their peers, but they will catch up and it is possible for them to excel as adults, especially if you encourage them to spend time exploring their field of special interest. (It won't always be just Thomas the Tank, I promise you!) Special interests can and should be developed... and the world will be a better place for that.:)

Jovi
11-Jul-09, 23:16
I've been reading this thread from the start and what stands out is the incredible commitment that all the parents of children with ASD have,to find the best way forward for their child and do the best they can for them. I am not a parent of a child with ASD but I have had what I consider to be the pleasure of working with children with disabilities in particular ASD for a long time. These children teach you to look at life in a different way,things that we take for granted can make them anxious and bewildered, our world can be a scary place. It can be frustrating,demanding of time and patience but when you make a step forward no matter how small,it is so rewarding. I go home at the end of my working day and can return fresh,for a parent it is 24/7 and life consuming.I can't put myself in your place or understand the emotional rollercoaster but know that there are people who will listen and try to help and there are therapies and courses that can make a huge difference to a childs life . Every child is unique and what will help one may not help another. Other parents can be the best support as they understand best what you are going through and no matter how busy they are,they always seem willing to help another family in the same situation by lending an ear,a shoulder or offering their invaluable experience. I hope that anyone in this situation finds the best way forward for their child and their family and finds the support needed to make it happen.

Amy-Winehouse
11-Jul-09, 23:19
Wow, there are some really great parents on this thread - give yourselves a pat on the back! Sometimes challenges bring out the best in us...;)

For those of you worrying about the future for your ASD diagnosed children, it's worth having a look at this site:

http://www.arghighland.co.uk/index.html

Autism Rights Group Highland is a voluntary organisation run entirely by adults who are on the autistic spectrum. Their aims include helping people to understand how autistic individuals perceive the world and educate people about autistic strengths. Some of the ARGH campaigners are parents themselves who only received a diagnosis when their child was identified at school as having an ASD. Others are young adults who have grown up always knowing they are autistic. Within the group you will find intelligent, well-educated, passionate people - all with a diagnosis of ASD. (Some are autistic, some have Asperger's.) I know that none of them have it easy, but I'm also sure that every one of them has strengths and talents and lots to give to society.

So don't write off the future for your child, Brandy. Autistic individuals develop differently from "neuro-typical" children, it's true, but they DO develop with plenty of encouragement and love. Just now, your wee boy may be fixated with Thomas the Tank Engine, but it's very possible that in years to come, he'll become the engineer who is fixated with finding a way for us all to survive on the moon, or the scientist fixated with finding a cure for cancer. And with the tenacity of his autistic mind, he's actually more likely to succeed in these challenges than someone with a neuro-typical mind. He won't be distracted if that's what he's decided to do - as parents we see that every day.

As a society we NEED autistic minds. They see things differently and so find new solutions that a sheep like myself can't even begin to imagine. They dig their heels in (boy, as parents do we know that?!) but that stubborn streak can be developed into the tenacity required to succeed in their chosen field. The developed autistic mind is well suited to engineering, computing, science, and there are also many creative autistic souls out there excelling in the fields of art, music and writing.

It's tough. There's no doubting that. But I do believe it's worth it. See the best in your child, keep your expectations high, accept that they will never be "ordinary" and cherish the positives that make them "extraordinary".

At school they may often seem to be behind their peers, but they will catch up and it is possible for them to excel as adults, especially if you encourage them to spend time exploring their field of special interest. (It won't always be just Thomas the Tank, I promise you!) Special interests can and should be developed... and the world will be a better place for that.:)
Best post i have read very postive and totally agree with what your saying my son is very visual and is brillant with puzzles and very good at working out what opens what lol which isnt great when you have an adult proof stair gate lol:L:L

brandy
11-Jul-09, 23:42
thank you so much for that post tootler that has relaly made my day/
ben is coming along really well in himself and is very happy. its constand hard work but i wouldnt trade him at the end of the day for anything.
he is so very clever, and can do so many things.. sometimes, i just forget what he can do, because of some of the things he cant do that most kids his age can. and i need a little reminder of just how special he really is.
and today you have given me that...
thank you.
just a wee note on today.. we were sitting at the computer randomly singing george of the jungle... from not speaking at all six months ago, to singing songs together now. hes come a long way!

Stavro
11-Jul-09, 23:59
just a wee note on today.. we were sitting at the computer randomly singing george of the jungle... from not speaking at all six months ago, to singing songs together now. hes come a long way!

Many autistic children have amazing abilities in tone recognition.

Vistravi
12-Jul-09, 01:10
Many autistic children have amazing abilities in tone recognition.

Austistic children have a gift in a certain area which they excell at the most. My brother is austistic and has a almost photographic memory. He can remember everything right down to the fine details. Its truly something considering that everyone else has awful memories.

Amy-Winehouse
12-Jul-09, 11:00
thank you so much for that post tootler that has relaly made my day/
ben is coming along really well in himself and is very happy. its constand hard work but i wouldnt trade him at the end of the day for anything.
he is so very clever, and can do so many things.. sometimes, i just forget what he can do, because of some of the things he cant do that most kids his age can. and i need a little reminder of just how special he really is.
and today you have given me that...
thank you.
just a wee note on today.. we were sitting at the computer randomly singing george of the jungle... from not speaking at all six months ago, to singing songs together now. hes come a long way!
Thats brillant your son is singing away you should be so proud of how far he has come and he can only go further

stiggy
12-Jul-09, 11:27
just a wee note on today.. we were sitting at the computer randomly singing george of the jungle... from not speaking at all six months ago, to singing songs together now. hes come a long way!


That is fantastic Brandy every new thing he does will be wonderful.
Keep smiling. :)

oldmarine
12-Jul-09, 14:56
TLC - Tender Loving Care can go a long way in raising any child whether autistic or not.

cjb
12-Jul-09, 21:06
Yes i know they can and it is upsetting for all concerned when it happens.... but they can also be fantastic.
Autism outreach input by a teacher,into my sons mainstream school created a "Circle of Friends" for him: volunteers from his classmates who were helped to understand his autism and his individual needs and helped him cope in times of stress.
They were fantastic and he has never been so happy or felt so at ease in the company of his peers when life got tough!
Some kids can be cruel.. but I reckon most of them have the potential to become generous and useful members of the human race if encouraged to!:D

Vistravi
12-Jul-09, 22:01
TLC - Tender Loving Care can go a long way in raising any child whether autistic or not.

Too true oldmarine

Vistravi
12-Jul-09, 22:04
Yes i know they can and it is upsetting for all concerned when it happens.... but they can also be fantastic.
Autism outreach input by a teacher,into my sons mainstream school created a "Circle of Friends" for him: volunteers from his classmates who were helped to understand his autism and his individual needs and helped him cope in times of stress.
They were fantastic and he has never been so happy or felt so at ease in the company of his peers when life got tough!
Some kids can be cruel.. but I reckon most of them have the potential to become generous and useful members of the human race if encouraged to!:D

aww thats brilliant.:D

telfordstar
12-Jul-09, 22:05
Yes i know they can and it is upsetting for all concerned when it happens.... but they can also be fantastic.
Autism outreach input by a teacher,into my sons mainstream school created a "Circle of Friends" for him: volunteers from his classmates who were helped to understand his autism and his individual needs and helped him cope in times of stress.
They were fantastic and he has never been so happy or felt so at ease in the company of his peers when life got tough!
Some kids can be cruel.. but I reckon most of them have the potential to become generous and useful members of the human race if encouraged to!:D

My sons school introduced the circle of friends for him and I was truely fantastic although he's not autistic but has ADHD it helped him so much

Amy-Winehouse
13-Jul-09, 09:14
:D
Yes i know they can and it is upsetting for all concerned when it happens.... but they can also be fantastic.
Autism outreach input by a teacher,into my sons mainstream school created a "Circle of Friends" for him: volunteers from his classmates who were helped to understand his autism and his individual needs and helped him cope in times of stress.
They were fantastic and he has never been so happy or felt so at ease in the company of his peers when life got tough!
Some kids can be cruel.. but I reckon most of them have the potential to become generous and useful members of the human race if encouraged to!:D
Yes i have been lucky enough to see how many fantastic kids there is out there who have given my son a great start at his main stream nursery and thanks to them and the brillant staff my son loves it :D The good thing is my son is very young and so are these children and they dont treat him any different to the other kids so maybe with them being so young and seeing my son with autism will help them be more understanding in later life

telfordstar
13-Jul-09, 09:43
:D
Yes i have been lucky enough to see how many fantastic kids there is out there who have given my son a great start at his main stream nursery and thanks to them and the brillant staff my son loves it :D The good thing is my son is very young and so are these children and they dont treat him any different to the other kids so maybe with them being so young and seeing my son with autism will help them be more understanding in later life

I'm really not wanting to put a dampner on what you are saying but I would never underestimate children. Once my son was diagnosed early on we thought the exact same as you but unfortunatly it dosnt work like that. I do have my reasons for saying this as I have experinced it first hand. Younger kids are fine but mainstream ones are a whole lot worse all I'm saying is be aware of everything.

cuddlepop
14-Jul-09, 12:56
I'm really not wanting to put a dampner on what you are saying but I would never underestimate children. Once my son was diagnosed early on we thought the exact same as you but unfortunatly it dosnt work like that. I do have my reasons for saying this as I have experinced it first hand. Younger kids are fine but mainstream ones are a whole lot worse all I'm saying is be aware of everything.

I agree with you and too have had the unfortunate experience of High School "inclusion":~(

Primary School was fine the Head teacher stood on anykind of bullying that happened.First year of High School and lets just say the police were called and my daughter was cautioned.
Autistic kids just dont have a "stop" button.:~(

telfordstar
14-Jul-09, 13:14
I agree with you and too have had the unfortunate experience of High School "inclusion":~(

Primary School was fine the Head teacher stood on anykind of bullying that happened.First year of High School and lets just say the police were called and my daughter was cautioned.
Autistic kids just dont have a "stop" button.:~(


I must amit i am dreading when he goes to the high school up here as i know how easily led he is and at the moment he has been hegging used as the skape goat when something gone wrong. But be rest assured i will be making my stand. Thats what got me sorted with the school hes in at yhe moment and im glad i did it.

Amy-Winehouse
14-Jul-09, 13:20
I agree with you and too have had the unfortunate experience of High School "inclusion":~(

Primary School was fine the Head teacher stood on anykind of bullying that happened.First year of High School and lets just say the police were called and my daughter was cautioned.
Autistic kids just dont have a "stop" button.:~(
Thats terrible that your daughter was cautioned!!!!!!! you think the police would have been more understanding :eek: im shocked !!!

cuddlepop
14-Jul-09, 13:25
Thats terrible that your daughter was cautioned!!!!!!! you think the police would have been more understanding :eek: im shocked !!!


I insisted the learning disability nurse was present during interview and it was carried out in our own home.
The police insisted it was dealt with accordingly and passed onto the childrens panel.
Talk about brick wall.


One good thing came of it though,nobody pushes her around now.:eek:

Amy-Winehouse
14-Jul-09, 13:30
I insisted the learning disability nurse was present during interview and it was carried out in our own home.
The police insisted it was dealt with accordingly and passed onto the childrens panel.
Talk about brick wall.


One good thing came of it though,nobody pushes her around now.:eek:
Terrible you think in this day and age things would be different!!! at least your daughter doesnt get anymore hassle, My son has a tendancy to hit out at people if they get on his nerves something we are trying to work on but sometimes i think to myself what if he hits another kid if there in his face which he cant stand or they hit him my son is only 3 but very strong i pity the person who tries anything on him when he,s older like you say autistic kids dont have stop button !! Something we all have in common WORRY

stromalassy
14-Jul-09, 14:11
just out of curiosity.. is there any other orgers out there with autistic children?
been thinking about it a lot today..
started watching videos on youtube and ended up just having a good cry.
as some of you may know. ben was diagnosed with autism at the begining of June.
and at the time it was such a relief just to know.
you know kinda like. finally, now i know why all this has been happening!
why he does the things he does...
i was really upbeat and happier , thinking now we know which way the wind blows.. we cant work with this... we can get things started on his help.
but today im just down, thinking about everything...
Hi brandy, we've already met, you'll maybe remember me from the horses at watten, when you had porcha? Anyway, you finally got a diagnosis, i know how you feel about being kinda relieved about getting a diagnosis it's like you finally know whats wrong, but at the same time you dont want your child to be different, i struggled as a single parent with my son, from the age of 2yrs my health visitor at the time realised there was something not right, he finally got diagnosed at the age of 7, after a lot of pushing from my side. My son is 11 now and has been getting good support from his school and is improving, it's really difficult sometimes and very frustrating trying to get through to him, but the positives out way the negatives. I still have down days where i sit down and cry but then i'll give myself a shake and thank god that i have a healthy happy child, he could have been much worse. My son finds it hard to make and keep friends and it breaks my heart sometimes as he doesn't understand why his peers don't like him, he tends to instigate situations but doesn't realise it, therefore he feels he's always the victim. What i find most difficult is he looks like a normal boy( whatever normal is!) nobody can see his disability, although only 11 he looks about 14 and people expect him to act accordingly. I also hate when people who haven't spent much time in his company make judgements, and say things like "he's just a typical boy", "he'll grow out of it", "he shouldn't be behaving like that at his age", "he needs a good smack " "i don't think there's any thing wrong with him" or "you should be doing this or that, you're to soft with him" it drives me nuts. At the end of the day you do what you feel is right for your son, every autistic child is unique and special, with help and support you will cope Brandy, just concentrate on the positives and i'm sure Ben has lots. Take care.