?

Log in

No account? Create an account

Previous Entry | Next Entry

Has autism touched your life?





Some other time, some other place, and things would be different, maybe.
You might even know my name. You might even love me.
But if you'd let me share your world, I promise I could make things right.
So won't you let me share your world?
Won't you let me in? 

I wrote those lyrics in 1998. Back then, my 3-yr-old twin daughters lived in their own separate little worlds. Nobody else was allowed in.

Before I had children I didn't know much about autism. I'd seen Dustin Hoffman in Rain Man, but that was about the extent of my 'knowledge' on the subject. Of course, that all changed when the girls were diagnosed in '97. Senior Management and I soon discovered the diagnosis covers a wide range of symptoms. Mr. Hoffman's portrayal was by no means a blueprint of what we could expect.

Over the years we've come across a lot of people whose lives were touched by autism in some way. Some have children who managed to graduate from college despite being considered autistic. Others are still coming to terms with a recent diagnosis, resetting their hopes and expectations while grieving for the life and future their child will never have.   

Our girls are sixteen now. Sad to say, there'll be no college education for them. No marriage or children. Years ago we accepted (and started to prepare for) the fact that they'll never lead anything like a 'normal' life. In fact, it's the main reason we moved to America.
 
Even so, my daughters have changed since I wrote that song. They still don't really know my name, but they know I'm 'Daddy' and while we don't have full citizenship in their worlds, they long-since granted myself, my son and Senior Management a sort of occasional Green Card status. 

In the between times when when they're not pretending we don't exist or driving us to distraction, they laugh a lot, and we get lots of hugs. I know my girls are happy and when all's said and done, isn't that what we want most for our children?

How about you?

Has autism touched your life?
  

Tags:



Site Meter


Comments

( 69 comments — Leave a comment )
Page 2 of 2
<<[1] [2] >>
peadarog
Apr. 27th, 2011 07:10 pm (UTC)
A tough row to hoe :( But it sounds like you're all doing a great job.
jongibbs
Apr. 27th, 2011 11:50 pm (UTC)
I don't know about 'tough' but it's certainly interesting :)
ideealisme
Apr. 27th, 2011 08:31 pm (UTC)
Hi Jon

No, it has not touched my life. I notice it is becoming so much more common and I hope scientists discover why.

I wish you and your daughters and family the best for the future.
jongibbs
Apr. 27th, 2011 11:50 pm (UTC)
Thank you :)
melissajm
Apr. 27th, 2011 09:30 pm (UTC)
We're in the process of finding out if one of my nephews is on the spectrum. He's very bright, but social stuff doesn't always register.
jongibbs
Apr. 27th, 2011 11:55 pm (UTC)
It's a fairly drawn out process.
clarionj
Apr. 27th, 2011 09:33 pm (UTC)
Jon, it's wonderful how you find the joy you can with your kids, and yes, seeing them happy is the greatest joy we find as parents. We don't have any autistic kids in our immediately family, but I've friends with autistic children and hear some of the frustrations--not necessarily with the kids but with society and the lack of understanding. It's good to hear from parents. We all need to know more.
jongibbs
Apr. 27th, 2011 11:57 pm (UTC)
From what I've seen, we all deal with it in our own way :)
sallymn
Apr. 27th, 2011 09:40 pm (UTC)
Not autism, I have a niece who has Downs Syndrome.... my brother and his wife would have agreed with everything you said, and with the complicated, but at the ssame time simple, love that shines through...
jongibbs
Apr. 27th, 2011 11:58 pm (UTC)
They're nothing if not sincere :)
wendigomountain
Apr. 27th, 2011 10:47 pm (UTC)
A couple of weeks ago, my son and I were waiting in the hall at a University, which was offering a discount on evaluations for kids possibly on the Spectrum. A couple hundred instead of thousands for the testing. A kid, about my son's age, shows up with his mother. He proceeds to run up and down the hall, roll around on the floor, and bum cheeze-its off his mom, (they encouraged us to bring snacks), who said he had ADD.

My son turns to me and says "Dad, *that* kid has autism."
I chuckle and turn back and say, "Yep, and you probably do to."
"I thought I had Aspergers?"
"It's one level of it."
"Oh. Thomas Jefferson had Aspergers."
"That's what they say."

Both kids hit it off and got along like a house on fire for the rest of the testing. Still waiting for the results. This morning, my son had a panic attack. Threw up all over the place because he had been up all night "having boring dreams." He would not disclose his dreams because "My dreams are my business."
jongibbs
Apr. 28th, 2011 12:04 am (UTC)
Boring dreams? :)
(no subject) - wendigomountain - Apr. 28th, 2011 02:23 pm (UTC) - Expand
(no subject) - jongibbs - Apr. 28th, 2011 02:38 pm (UTC) - Expand
(no subject) - jongibbs - Apr. 28th, 2011 12:13 am (UTC) - Expand
(no subject) - wendigomountain - Apr. 28th, 2011 02:14 pm (UTC) - Expand
(no subject) - jongibbs - Apr. 28th, 2011 02:39 pm (UTC) - Expand
(Deleted comment)
jongibbs
Apr. 28th, 2011 11:11 am (UTC)
'...no one has a clue why'

I wonder if we'll ever know.
Nadia Williams
Apr. 28th, 2011 09:43 am (UTC)
Hiya, Jon. A friend of mine, LJ user Clarionj, gave me a link to your post. I have two sons on the spectrum, though one's diagnosis of Asperger Syndrome is provisional, pending a full diagnostic team evaluation scheduled for 10 June. I've written quite a lot about my experiences with autism, my struggles and victories, as I feel it not only helps me to scream these things into the ether for my own relief, but also gives an honest picture to other parents dealing with similar situations, perhaps helping someone somewhere, or at least make them not feel so alone.

I'm on LJ but don't use this blog any more, I now post on Wordpress. I'm not sure if it's appropriate to post links here to some of my blog entries related to the topic - I'm not trolling for hits, I just feel they provide the best picture of my experiences with autism. I think this one (http://nadiawilliams.wordpress.com/2011/02/10/aspergers/) is quite a good picture of a difficult situation, and some of the challenges high functioning autistic kids face. I remembered the link I was given this morning when I posted this artice (http://nadiawilliams.wordpress.com/2011/04/28/the-other-blindness/) a few minutes ago, which I hope may be a helpful reference for parents trying to cope with unhappy neighbours.

Here's a selection (http://en.search.wordpress.com/?q=site%3Anadiawilliams.wordpress.com+autism+) of posts I've done on the topic, if anyone wants to look at more.

Thanks for sharing your experience. I truly believe that the more people talk about it, the more we promote understanding and the easier we make everybody's lives.
jongibbs
Apr. 28th, 2011 11:12 am (UTC)
Hi Nadia,

I hope that evaluation goes the way you want.
(no subject) - Nadia Williams - Apr. 28th, 2011 11:53 am (UTC) - Expand
(no subject) - ideealisme - Apr. 28th, 2011 10:50 pm (UTC) - Expand
(no subject) - Nadia Williams - Apr. 29th, 2011 02:56 pm (UTC) - Expand
(Anonymous)
Apr. 28th, 2011 01:09 pm (UTC)
Hi Jon,
I met you when you presented to the SJ Writers’ Group a couple of months ago. It was my first time attending. You gave a great presentation on blogging…thank you! I have been checking out your blog fairly frequently ever since.

Autism has not only touched my life but it has wrapped its tentacles around my concept of family and squeezed until it changed its shape and form and it has simply become “us.” My son is 28 and, like you, over the years we have learned to balance and blend what is normal with what is autism. In spite of countless difficult situations, there have been many joys – the small progresses, the wonderful people that we would not have in our lives if our son wasn’t autistic and, the most important thing to me anyway, having a unique perspective on what is really important in life.

My son is usually happy, too. He goes to a program every day where he works at jobs suited to his level of functioning and is able to be productive. But there is no McDonald’s in his future, either.

Thank you for posting your insights during Autism Awareness Month – times two.

Linda
jongibbs
Apr. 28th, 2011 01:54 pm (UTC)
Hi Linda,

Thanks for your kind words. I'm sorry to hear about your son. that must have been quite a struggle for everyone concerned, especially back in the 80s.

As for McDonalds, while there's not much chance that my girls will ever seeing behind the counter, they sure enjoy the drive thru ;)

Take care :)


mnfaure
Apr. 28th, 2011 08:50 pm (UTC)
No, autism has not touched my life, but those are beautiful lyrics. :)
jongibbs
Apr. 28th, 2011 09:21 pm (UTC)
Thank you :)
Page 2 of 2
<<[1] [2] >>
( 69 comments — Leave a comment )

Things What I Wrote and Other Stuff

No longer in print but there are still some copies floating around out there


No longer in print but there are still some copies floating around out there















 











THE MEAGER PUDDLE OF LIMELIGHT AWARDS


Books by my writer friends - compressed

NJ Writing groups - compressed

NJ writing conference - compressed

Tags

Latest Month

September 2019
S M T W T F S
1234567
891011121314
15161718192021
22232425262728
2930     
Powered by LiveJournal.com
Designed by Paulina Bozek