Found this poem on asd

[buzz for boys]

After getting an official diagnosis of aspergers for my ds last week - no huge shock we just went through the assessment for the school - I have been scouring the internet to find out information to help me understand and support him. I found this today and finally i realised that it described us ~ i found peace at last that its not something that I do wrong as someone else wrote this!! Hope it helps anyone else with a child with asd

Imagine ...

By Jayne

No one loves you ...

No family picnics, parades, or weddings ...

No friends or playmates ...

No common sense ...

Imagine ...
A 12 year old who doesnt understand what will happen if he runs in front of a car or jumps into a pool ...

Imagine ...
A home looking like Fort Knox - just to keep your brother safe ...

Imagine ...
Being told your brother has a neurological brain disorder and may never be able to speak, function in society, live alone, marry or have children. Your heart sinks ...

Imagine ...
After waking your brother in the morning, if you dont do everything in the same order as the day before, at the precise moment, its enough to ruin his entire day ...


Imagine ...
Having your home invaded with teachers, social services, doctors for hours ...

Imagine ...
Watching the agony on your brothers face giving you the why are you letting them do this to me? look while doing numerous scans, blood work, x-rays and testing to figure out how to help him feel better ...

Imagine ...
Just how many that kid is a brat stares you get in public simply because your brother cannot handle social situations including a simple trip to the newspaper shop ...

Imagine ...
What autistic children, parents and families go through ...

On a daily basis.

 

[mumloveseeyore]

Thank you, so true.

 

[Pinky166]

 

[JohnnySharp2]

Yes a lot of that rings true for Joshua.

The older he gets the harder it gets. A lot of what we take for granted he will never be able to do, going to the cinema, going out with his mates and so much more but he is ours and we adore him.
He will never ever be able to say mummy or daddy.

 

[mandymouse]

 

[irongirlof12]

he has you for a Mum, don't forget that

 

[scojos]

firstly from one mom to another
my ds 9 has aspergers or HFASD - they would not split the diagnosis.
the are loads of support networks out there, we are in wolverhampton(i see you in the midlands too...) and i would suggest you get in touch and see what support is available. josh belongs to a local SN group, which allows us "time" with the other two, as anyone who has a special needs child will know, siblings get lost along the way sometimes...
i am lucky, josh is "intelligent" main stream school and an obsession with football, he appears normal and can interact with you on a level, however like the poem says, OCD repetitive behaviour, no common sense, and cruel kids at school (josh however, having no boundaries, having been pushed too far by one kid (he strangled him..) my son the literally beat him up, whilst i do not encourage this behaviour AT ALL the kid had been bullying him for some time, parents and school had chose to do nothing...
the head called me to tell me, expecting me to freak, "well, what did you expect? was he being supervised? no? ahhh well, you were warned this would happen, and no, i will not collect my son for the rest of the day, he was the victim who fought back, you should have been supportinh him not isolating him..."
surfice to say, other kid left well alone from then on
i too, as a teacher, knew what was wrong with my son, in fact i told my GP on several occasions, but im not medically trained, and no one listens.
you can also apply for the DLA (mine is used to pay for my hols)
good luck, there is a very active ASD group on the disabilities board, you might want to pop over and say hi, they are very friendly too
all my best wishes
tracy

 

[joolz1910]

I wondered if all the parents of children with aspergers had read The Curious Incident of the Dog in the Night-time? I wondered if the character of Christopher rings true.

I really like that poem as it brings home the difficulties that siblings face.

 

[buzz for boys]

I agree that as ds gets older the things he cant do and his lack of social skills get so much more apparent and more difficulty to just shrug off. My ds can communicate but in his own unique way he uses words but nver quite in the way u would expect !!
I have a 3yr old with more self help skills and social skills than my 8 yr old and this is really difficult at times
I also find that my ds needs more care and attention than my 3 yr old which is difficult to explain when masses of parents at the park are staring at you for choosing to shadow a 8yr old while the 3 yr old runs free.
A big part of me wanting him not to be diagnosised so that it would be something that could be fixed but now we appear to have lost the support ntwork of psychologists speech therapists etc and are left alone to muddle through and now we fight the school alone to kp him mainstream is it a fight worth fighting???
I will pop across and look aat the disabilities board as i have so many questions that know they have ruled out post traumatic stress and made a firm diagnoisis of aspergers I really do need to know more x
Thanks for the replies guys x

 

[Netty]

I wondered if all the parents of children with aspergers had read The Curious Incident of the Dog in the Night-time? I wondered if the character of Christopher rings true.

I really like that poem as it brings home the difficulties that siblings face.

the only problem with that book is that the character seems to have nearly all the characteristics of AS, whereas this doesnt happen they have a few characteristics not all of them!

look up on google Tony Attwood-he is a specialist in AS and his books are brilliant, and will help you immensly

 

[natalielongstaff]

I wondered if all the parents of children with aspergers had read The Curious Incident of the Dog in the Night-time? I wondered if the character of Christopher rings true.

I really like that poem as it brings home the difficulties that siblings face.

ive read that, its very good.

 

[JohnnySharp2]

A big part of me wanting him not to be diagnosised so that it would be something that could be fixed but now we appear to have lost the support ntwork of psychologists speech therapists etc and are left alone to muddle through and now we fight the school alone to kp him mainstream is it a fight worth fighting???
I will pop across and look aat the disabilities board as i have so many questions that know they have ruled out post traumatic stress and made a firm diagnoisis of aspergers I really do need to know more x
Thanks for the replies guys x

What we were told by medical people a few years ago, is we had the opportunity (to be honest I cannot remember the full picture) to go a step further and maybe find out more about the causes but it wouldn't be a cure. Just didn't want to put him through an operation & stress when we wouldn't effectively benefit apart from perhaps more information on the underlying problem(s).

As far as Joshua is concerned whilst he is still young the disabilities are not as noticeable, it's the future that is our worry after all he is growing up fast. The things the majority of teenagers and young adults do Josh will never be able to.

You are not alone in your worries, I have had several pm's from people about autism asking for advice, and the disABILITIES forum is fantastic also - even for the bare minimum of talking to someone about it.

I suppose all our issues fit in with going to Florida as often as we have done, and hopefully will continue to do - just to make the most of his early years....and we are not getting any younger either!

 

[Pegasus928]

Bradley is 14 now and we got a diagnosis some years ago now of Aspergers. During our last visit to his doctor however the behaviours that we were explaining were more characteristic of ADHD.
He is happy to go out on his own and try to make friends - but experience tells us that it is never long before he says or does something inappropriate that alienates him further. We constantly worry about what the future holds with regards to him gaining employment, making friends, starting a family or just going out on a Friday or Saturday night.
Only time will tell if our concerns are justified, and in the meantime we seem to be getting less and less support as he gets older - when we feel we should be getting more. The stage we are at now is to seek out the services of a professional, that we will be willing to pay for, in the hope that they can offer us all some advice and help.
Our thoughts and wishes go out to everyone who is in the same situation - although we all know that no 2 children are the same - and hopefully we can all get the help and support we need.

 

[scojos]

it suprises me how many people with asd kids love disney, for me josh is "normal" over there, high sensory stimulation (sights sounds etc) and the commando style with which everything is planned helps him cope with things.
i just wanted to offer pp and everyone else with asd kids
we are lucky to having them, and we shold take care of each other...
Tracy

 

[mumloveseeyore]

yes we love disney because everyone is excited and my 16 year old who loves power rangers doesnt stand out so much, as you say knowing where everything is and what is likely to happen helps. Gill

 

[scojos]

as an aside ... have you seemn the disney prints that some of the disigners have done for autism awareness?
they are great and avoid confrontations of the sort"why are they going to the front, theres nothing wrong..."
hey, i were mine at home
if you go to the disignersw thread, try donatalie or rumbly tumbly, they have them in their galleries.
tx