Some days I just wish things could be different (autism)

[erinszoo]

Not that I'm whining. Not that I don't enjoy my life. It's just ...

Well, I have a son who is autistic. Luckily, he is not severely so and has managed to get into college BUT ... we had to fight and claw to get him through school, to get him the services he needed to succeed, to find him resources to help him function, AND we've had to put up with a LOT of abuse and misconceptions and misunderstandings along the way. Everything about life as it deals with integrating our son into the world we live in has been just plain old HARD. Nothing has been easy, nothing has been simple, nothing has gone smoothly. Everything is such a struggle and some days ...

some days I just don't want to have to struggle any more.

Even now that he is college where he is supposed to have disability services, he has to fight to get them ... which means I have to keep helping him to fight to get them. And it's just more than I can cope with some days. He has come so far in his life, farther than most people ever thought he would, and he has the promise of a bright future so I guess I just don't understand why we still have to struggle so hard.

They told us when he was diagnosed that the diagnoses was for life. It wasn't something that would ever go away. And yet, I hoped, maybe, somehow, if we did all the right things in all the right ways, if we got him the help he needed, if we fed him the right foods, if we encouraged him in the right ways, if people just understood his diagnoses and what it means for his life and our life that it would be Okay ... but some days, it's just not okay.

As a parent it literally physically hurts me that my child has to endure what he has in life and emotionally at times is just devastating beyond words. And probably the worst part, is I feel so alone, so isolated from the world because only other parents of autistic children understand the complete and utter exhaustion and emotional roller coaster that we live with and yet, we have no time to help one another because we are constantly helping our kids.

Tears just don't resolve ...

 

[oesdog]

Not that I'm whining. Not that I don't enjoy my life. It's just ...

Well, I have a son who is autistic. Luckily, he is not severely so and has managed to get into college BUT ... we had to fight and claw to get him through school, to get him the services he needed to succeed, to find him resources to help him function, AND we've had to put up with a LOT of abuse and misconceptions and misunderstandings along the way. Everything about life as it deals with integrating our son into the world we live in has been just plain old HARD. Nothing has been easy, nothing has been simple, nothing has gone smoothly. Everything is such a struggle and some days ...

some days I just don't want to have to struggle any more.

Even now that he is college where he is supposed to have disability services, he has to fight to get them ... which means I have to keep helping him to fight to get them. And it's just more than I can cope with some days. He has come so far in his life, farther than most people ever thought he would, and he has the promise of a bright future so I guess I just don't understand why we still have to struggle so hard.

They told us when he was diagnosed that the diagnoses was for life. It wasn't something that would ever go away. And yet, I hoped, maybe, somehow, if we did all the right things in all the right ways, if we got him the help he needed, if we fed him the right foods, if we encouraged him in the right ways, if people just understood his diagnoses and what it means for his life and our life that it would be Okay ... but some days, it's just not okay.

As a parent it literally physically hurts me that my child has to endure what he has in life and emotionally at times is just devastating beyond words. And probably the worst part, is I feel so alone, so isolated from the world because only other parents of autistic children understand the complete and utter exhaustion and emotional roller coaster that we live with and yet, we have no time to help one another because we are constantly helping our kids.

Tears just don't resolve ...

Hay there are lots of parents struggling to cope. I don;t have the answers and I have not read all your post - but I am here for you.
I know its NOT ok - I hear you.
Will read and reply later as am up to my eyes. You will find I am also mother of disabled. Autistic tendencies among other issues.
Hand in hand makes a long road a little shorter.

Oes

Hold on !

 

[oesdog]

Ok I am back - as you say parents of the disabled are always busy and tired beyond belief! I will try best I can to answere you.
So that means I will be blue in this post! lol
Originally Posted by erinszoo

Not that I'm whining. Not that I don't enjoy my life. It's just ...
YOU HAVE EVERY RIGHT OR REASON TO WHINE MOAN SCREAM KICK OUT - IT IS OK TO BLOW SOMETIMES!

Well, I have a son who is autistic. Luckily, he is not severely so and has managed to get into college BUT ...
Sometimes the ones that are least disabled are are the MOST disabled!!!!! They are the ones out in society and they are the ones most vulnerable!
we had to fight and claw to get him through school, to get him the services he needed to succeed, to find him resources to help him function, AND we've had to put up with a LOT of abuse and misconceptions and misunderstandings along the way.
Yes and that WILL happen time and again - When My son went to college I had to fight for EVERYTHING! I too had issues with understanding his needs to the point one lecturer called him up to the front of the class in year two and told the new students not to befriend this little Shxxt - so yes getting help can be daunting getting support even more so. In year two we finally got a one -to -one helper and our son got equal access to rescorses. I hear you in this but don;t expect everything to be fine once he gets through college as a big world out there iis NOT GEARED TO his needs!
Everything about life as it deals with integrating our son into the world we live in has been just plain old HARD. Nothing has been easy, nothing has been simple, nothing has gone smoothly. Everything is such a struggle and some days ...
The fact is your son is different and you will never ever make him the same as everyone elses child! Once you embrace his difference and " let go" of your dreams you will feel a bit less stressed!

some days I just don't want to have to struggle any more.
None of us want to struggle anymore, we are surounded with folk who oooh and ahhh at our situation but seldom do we come accross someone who actually wants to roll up their sleves and offer to take over for a while! We carry a cross that few would ever want to help with.

Even now that he is college where he is supposed to have disability services, he has to fight to get them ... which means I have to keep helping him to fight to get them. And it's just more than I can cope with some days.
YOU WILL COPE AND YOU WILL DO IT BECAUSE YOU ARE HIS MOTHER AND YOU ARE HIS VOICE!!
He has come so far in his life, farther than most people ever thought he would, and he has the promise of a bright future so I guess I just don't understand why we still have to struggle so hard.
The world does not want to open itself up to these young folk that is why you are struggling and you will continue to do that for him for the rest of your life. You are trying to make the world "fit" your boy. The world is round and he is square and that is the way it is! To try to force your son to be what the "world wants" - you will only hurt your child by trying to bash the corners off! Use your energy to try to find out what is available for him in terms of independent living ? What about after college what about supported living and supported employment - What about when Mummy is no longer there to fight who will fight then???? You need to look to the future and his needs once he leave college and ultimately leaves YOU! You will need to be starting to "let go!"

They told us when he was diagnosed that the diagnoses was for life. It wasn't something that would ever go away. And yet, I hoped, maybe, somehow, if we did all the right things in all the right ways, if we got him the help he needed, if we fed him the right foods, if we encouraged him in the right ways, if people just understood his diagnoses and what it means for his life and our life that it would be Okay ... but some days, it's just not okay.
This is unrealistic expectations, wishful thinking - YOU NEED TO STOP!!!!!!!! NO he cannot be fixed and somethings are better left broken!!!! You need to Accept your son for who he is right now because if you can;t how can anyone else????

As a parent it literally physically hurts me that my child has to endure what he has in life and emotionally at times is just devastating beyond words. And probably the worst part, is I feel so alone, so isolated from the world because only other parents of autistic children understand the complete and utter exhaustion and emotional roller coaster that we live with and yet, we have no time to help one another because we are constantly helping our kids.
YOU ARE NOT ALONE!!!!! - You are socialy issolated though and you will know that many "friends" you once had are not there for you anymore. These were not real friends! Disability is scary and frightening and it isolates you from society. YOU have to go out to others and seek adult company and do other things than look after your son! You need to care for your mental state because if you don;t care for yours you wont be in a fit state to care for his!!!!!!

Tears just don't resolve ... NO tears wont resolve you have a broken child - I have two broken children - no our tears cannot fix them. But we can learn to help them and come to terms with our damaged children.

Please don;t think me harsh in my answers to you I have walked this road a longtime TWINS - 25yrs brain damage, multiple handicaps and autistic tendencies. - YOU ARE NOT ALONE!!!!!!
Danny 25yrs

Ben 25yrs



YOU ARE NOT ALONE!!!!!!!!!!!!!

Oes

 

[newfoundland]

I feel your pain oesdog, and on some days you just have to say it. There are all the other days when you struggle and fight to help your son get the help that will enable him to achieve his potential. And then there are the days when it's all to much. It is not unrealistic to hope that your son will be a respected and contributing member of society, I have worked with autistic children who have achieved this. I have also known autistic people who have been able to model their behaviour and responses on others and have therefore become less socially isolated and completely acceptable in society. Tomorrow or the next day youmay be ready for the fight again. Just hang on to that.

 

[oesdog]

I feel your pain oesdog, and on some days you just have to say it. There are all the other days when you struggle and fight to help your son get the help that will enable him to achieve his potential. And then there are the days when it's all to much. It is not unrealistic to hope that your son will be a respected and contributing member of society, I have worked with autistic children who have achieved this. I have also known autistic people who have been able to model their behaviour and responses on others and have therefore become less socially isolated and completely acceptable in society. Tomorrow or the next day youmay be ready for the fight again. Just hang on to that.

This is NOT MY THREAD!!!!!!!!!
Oes