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Annmaria
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19 Jan 2011, 5:58 pm

Today I just realised that I am on my own I have tried to get support for my son that I thought that was availabe but I now know that nothing is out there I have been in touch with local services but to be honest its all a placebo that we think as parents of children or a child with AS that supports are available. Its there but when we ask for it there is nothing has anyone else felt the same.

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annmaria



Avengilante
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19 Jan 2011, 6:36 pm

And that's more support than he'll ever get as an adult.

You know all those laws on the books that are supposed to prevent the disabled from being discriminated against? Fiction. Urban myths told to make society at large feel something positive is being done so they're not obligated to care. Nobody actually enforces that stuff, not even the state agencies supposedly created to help the disabled, they just push papers around and hold conferences to TALK about the disabled and how their needs are being met. Welcome to our world.


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Annmaria
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19 Jan 2011, 6:47 pm

I am a fighter I dont really know what I need but I do know what I want that my son has a fair chance of been who is and I am sure that he can any thing he wants to be but he needs kindess and understanding and to be listen to get there can he be heard.

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annmaria



Annmaria
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19 Jan 2011, 7:01 pm

Avengilante your right but to even have to think this way and I know its a fact makes me so angry I am a mom of possibly 2 AS kids totally different from each other 1
boy and a girl you know that already makes a difference as I am new to this it hard for me to accept the words disabled maybe the reason cause I was tautened as a child. But as a parent I want the best for my kids I understand from any parent this is a battle. How do you move on?

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annmaria



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19 Jan 2011, 7:11 pm

Well, ultimately your choices are assimilate it and keep moving, or kill yourself.

The life of an Aspie is one of bullying, humiliation and intolerance. You kinda get used to it. I think the biggest challenge for most is finding something you can do to make a living that fits with one of your obsessive personal interests, otherwise its very hard to stay focused. If you can maintain anything resembling a consistent living, at least you can survive. But normal people have little tolerance for someone that does not LOOK handicapped, but seems odd anyway. I wasn't diagnosed until well into middle age, so even if support had been available, It wouldn't have been any advantage to me for most of my life. Its ironic that you can be discriminated against for having a disability that neither you nor the discriminator realizes you have. Both they and I thought of me as just a weirdo.


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y-pod
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19 Jan 2011, 8:54 pm

In my experience, the gentle care, love and proper guidance of a parent can help any kid build confidence. For a person who grow up with enough confidence, they can withstand what life has to throw at them much much better than all those with low self esteem (which seem to be a lot of people, even perfectly healthy, beautiful ones) can.

It can be very little differences here and there, and they all add up to a better life. i.e. being able to resist sales pitch, being able to say no and defend their own position, not bothered too much by criticism, willing to try again after rejections, not giving up easily at difficult tasks, take charge of one's life and relationships...etc.

Oh and you're not alone. You've found us. :)



Annmaria
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19 Jan 2011, 8:57 pm

All I can say is that I feel sadness not toward you only admiration to you its a very dark world I think if I am honest I am there too but if the stars shine brighter than good things will happen thanks for your honest replies hope the best sucess in the future for you and you can chat to me anytime.

God Bless

Take Care

Ann

Kindness is a Gift!! !! !!



missykrissy
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19 Jan 2011, 10:30 pm

i feel the same way. it has been three years of desperately looking for help and still there is no help. people offer help, they refer you to help, they talk about helping you and then you have to go to conferences and meetings about the help you are going to get but there is no help coming. and when help does come they tell you things that are useless... like 'you as a parent need a break'..but there is no one willing to watch the kids if i go on a break because they will all have meltdowns at the same time and it's totally unbearable to an outsider. they tell you things you already know and press to know every detail about your child which in the end leads to more people who can't help you. it is frustrating. they should just be honest and tell you that you are on your own. now i am being pressed to get my third child diagnosed by my second childs social worker to which i replied "why? is he gonna get help? where is he gonna get help, who's gonna help? you're already here. can you do anything to fix it? no, you cant, so what's the point?" mind you, i like the social worker. she is the only person i know who can tolerate the children long enough to visit my home but she really just asks questions and takes note of anything 'important'. i am so tired of being refered from agency to agency to different services......there is no one out there that can help!!



liloleme
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20 Jan 2011, 2:40 am

I dont know how things work in Ireland but in the US it is pretty much the same. They make it seem that you can just go out and get services for you kid but when you look you cant find anything unless it has a huge price tag. I was fortunate in the fact that my Aspie has a younger sister with Autism who was diagnosed before age three and was already receiving services before he was diagnosed. Still no one was offering help because he had Aspergers and this made a difference which I did not and do not understand. I was told by my daughters therapists that the "squeaky wheel" gets what they need. In other words, dont give up and make a lot of noise about it. Having AS myself made this difficult for me but with the help of my husband we managed to be "noisy" enough that they finally gave my son services. We got in home therapy once a week (my daughter got three days a week), a social skills group for him to attend once a week, an education consultant who went with us to his school meetings, and OT (from the school) twice a month. Not a lot of services compared to what my daughter got but initially they were telling me that he would get nothing from our cities Regional Center who gave my daughter full services.
We now live in France and are still fighting to get services, even for my daughter. So far all we have is aides for both my kids at school. My son gets his half a day and my daughter all day. Here its a paper work game and there are two different organizations (the handicapped and the Autism org) that we have to deal with. Both want different things and they dont seem to work well together. We have been here since August and my kids still have no therapy which is not good for my Autie as she thrives with therapy. She did not speak until after three years old and she is nearly six now. They are working with her at her school to teach her French but she only just learned to be conversational on about a two year old level in English so they are not making a lot of head way.
Its good that you are a fighter because as parents of kids with Autism we have to be!



DW_a_mom
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21 Jan 2011, 3:22 am

We've been very lucky. Our son has gotten what he needed. Sometimes I had to push, but we always found what was needed.

I encourage people not to give up. You may have to try someone else or even move, but there are people and places out there that DO have help.

And don't discount the value of the little things. A member here wrote a book in the hopes of helping all of us parents and the information is really helpful. You can find it on the recommended reading list.

But I do know the feeling, none-the-less. It is a lonely road because no one else walks the road you are walking, and that is true even when you can find support and answers. They still aren't in your shoes.


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whatamess
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21 Jan 2011, 8:42 am

I didn't bother to ask...it's all BS...my son was treated like garbage by so-called special ed teachers at a gym class he attended...he was kicked out of dancing class because of his speech (or at 8 he could take it with the 2-3yr olds), we could not put him in a school we thought would benefit him because "they didn't take kids like that"...and you know, we homeschool and do our own thing...I'm not wasting my time with the govt, the schools and everyone else...

Focus on your child, find as much as you can about ways to help him (this forum has been the best learning experience for me) and move on...more than anything they need some peace! My son has flourished...everyday he is better...it was a long road and we are not done...but it's very rewarding as people who meet him say "he's not autistic, are you kidding?" or others who have known him for years say "wow, he is so different now..." So move on, tell them to take a hike and do your own thing...your child shouldn't have to wait for the schools or other people...

Good luck...



AnotherOne
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21 Jan 2011, 1:45 pm

whatamess wrote:
I didn't bother to ask...it's all BS...my son was treated like garbage by so-called special ed teachers at a gym class he attended...he was kicked out of dancing class because of his speech (or at 8 he could take it with the 2-3yr olds), we could not put him in a school we thought would benefit him because "they didn't take kids like that"...and you know, we homeschool and do our own thing...I'm not wasting my time with the govt, the schools and everyone else...

Focus on your child, find as much as you can about ways to help him (this forum has been the best learning experience for me) and move on...more than anything they need some peace! My son has flourished...everyday he is better...it was a long road and we are not done...but it's very rewarding as people who meet him say "he's not autistic, are you kidding?" or others who have known him for years say "wow, he is so different now..." So move on, tell them to take a hike and do your own thing...your child shouldn't have to wait for the schools or other people...

Good luck...


Bravo! I am soooo glad to hear such an encouraging story.



awells
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23 Jan 2011, 3:48 pm

I don't know where you are in Ireland and I've heard the support can be patchy around the country but we have got help from the St. John of Gods Lucena clinic and i've heard that Enable ireland does some assessments and one to one too depending on the associated problems. We've also been able to get some resource hours from the school based on my 10yolds Asperger diagnosis, so they are doing some things like social stories with him. There is also a book by Dr Ross Greene that I have found great and I think he has a website too with a forum/clinic for submitting your difficulties.



Annmaria
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23 Jan 2011, 6:13 pm

Hi awells I live in the south not only is it difficult to get support its difficult to get local services invovled unless they do there own assessment. I have done most assessment private hoping to get around the red tape nightmare, I have been informed that there is a 2y waiting list at the Autism Service even if I have the diagnosis crazy other wise I have to go to Dublin where I got the original diagnosis. The education dept will give the resource hours he was receiving them any way as he has a diagnosis of ADHD, ODD but the school put him in groups which has been no benefit to him he finds it not challenging doesnt understand why he has to attend because he knows the stuff already leads only to angry and upset. They are aware of the AS diagnosis he will receive 5 hours resources for himself but the school have the say in how its used I have been arguing with them about giving him one to one but because it will cause a problem for the school they argue that its not good for him to be on his own socially rubbish they dont have to deal with the meltdowns upset angry when he comes home. He has only started post primary this year I had to threaten not to let him go back after holidays to get a meeting with the school the outcome was a little possitive they seem to think they understand but they are clueless. sorry for ranting but I am so angry and fed up I am just thinking why bother with supports it a joke a placebo.

Annmaria