OT: Connecting with autistic children

[Louis]

Link to NYT story (http://nyti.ms/1qfvak1)

Wow that was tough, but fascinating.

I'm single and don't have kids, but I'd say that raising an autistic child is just about as challenging as it gets. The burdens some folks have to carry, the parents and the kids, and still go on living - I find it amazing.

In this case the key was connecting through Disney movies.

[oldpotatoe]

Link to NYT story (http://nyti.ms/1qfvak1)

Wow that was tough, but fascinating.

I'm single and don't have kids, but I'd say that raising an autistic child is just about as challenging as it gets. The burdens some folks have to carry, the parents and the kids, and still go on living - I find it amazing.

In this case the key was connecting through Disney movies.

There is no tougher nor rewarding 'job' that raising children. I retired and now help to 'nanny' an almost 3 year old and almost 1 year old set of grand daughters, VERY rewarding and the toughest, most tiring thing I have ever done. Makes night landings on the CV seem easy in comparison...

Not in the above situation but love does sometimes conquer all.....

[dekindy]

My Son turned 18 this Summer and we have had no breakthroughs like this. He is epileptic, autistic, and functionally 2-3 years old. While this story gives folks hope, our Son and the vast majority of these children just never develop. Our Son's characteristics are more like a person with brain damage. We have had every test known and have not been able to find a cause. All we can do is treat symptoms and try to care for him the best we can. 4 years age he developed side effects from his epilepsy medication that controlled seizures to the point that they were not a concern. Now he is on a 3-medication cocktail plus a rescue med and he has lots of petit mal seizures and about every 2 weeks a grand mal seizure.

We have a long list of relatives and frames named as Successor Guardians for when we are gone and only hope it works out. When he gets out of school we hope to find some type of living arrangement to give us respite and him stability should something happen to us. Right now, have no idea what that will be. We have learned to take one day at a time.

I guess what I am trying to say is that in our experience this success story is unusual. Most kids never develop. I am referring to autism, which it appears Owen has a severe, but not the most severe case as he has made remarkable progress that parents like my wife and I used to hope for. This is in stark contrast to Asperger's which all autism conferences and seminars end up addressing leaving us parents with what I would call true autistic children without much support. I would not make light of anyone's disability as I know Asperger's is challenging. But most of those folks lead independent lives. I use the analogy that Asperger's is like having a sprained ankle compared to an autistic child which would be a paraplegic. It is just a whole other World. Thankfully, it appears they are finally going to separate Asperger's from the Autism Spectrum because there is very little overlap between the two. I went to an Autism Dad's support group and these Fathers could not believe what they were hearing as their kids had Asperger's.

[rePhil]

I feel for you. After an early retirement from my dream job I wanted to give something back. I spent 11 years working in our states largest center school for special needs children. As you know no 2 autistic kids are the same. And they are constantly changing. After a challenging day they went home to their parents,and I got to go home to relax. Their parents don't often get a break, and constantly struggled to find care during summers, holidays, etc.
From experience it's best to plan for the future early.


My Son turned 18 this Summer and we have had no breakthroughs like this. He is epileptic, autistic, and functionally 2-3 years old. While this story gives folks hope, our Son and the vast majority of these children just never develop. Our Son's characteristics are more like a person with brain damage. We have had every test known and have not been able to find a cause. All we can do is treat symptoms and try to care for him the best we can. 4 years age he developed side effects from his epilepsy medication that controlled seizures to the point that they were not a concern. Now he is on a 3-medication cocktail plus a rescue med and he has lots of petit mal seizures and about every 2 weeks a grand mal seizure.

We have a long list of relatives and frames named as Successor Guardians for when we are gone and only hope it works out. When he gets out of school we hope to find some type of living arrangement to give us respite and him stability should something happen to us. Right now, have no idea what that will be. We have learned to take one day at a time.

I guess what I am trying to say is that in our experience this success story is unusual. Most kids never develop. I am referring to autism, which it appears Owen has a severe, but not the most severe case as he has made remarkable progress that parents like my wife and I used to hope for. This is in stark contrast to Asperger's which all autism conferences and seminars end up addressing leaving us parents with what I would call true autistic children without much support. I would not make light of anyone's disability as I know Asperger's is challenging. But most of those folks lead independent lives. I use the analogy that Asperger's is like having a sprained ankle compared to an autistic child which would be a paraplegic. It is just a whole other World. Thankfully, it appears they are finally going to separate Asperger's from the Autism Spectrum because there is very little overlap between the two. I went to an Autism Dad's support group and these Fathers could not believe what they were hearing as their kids had Asperger's.

[Louis]

We have had every test known and have not been able to find a cause. All we can do is treat symptoms and try to care for him the best we can.

All my best wishes to your son and to you and your wife.

And let's hope that at some point in the next 20 years they figure out what's causing this and how to prevent or cure it.

[gomango]

My Son turned 18 this Summer and we have had no breakthroughs like this. He is epileptic, autistic, and functionally 2-3 years old. While this story gives folks hope, our Son and the vast majority of these children just never develop. Our Son's characteristics are more like a person with brain damage. We have had every test known and have not been able to find a cause. All we can do is treat symptoms and try to care for him the best we can. 4 years age he developed side effects from his epilepsy medication that controlled seizures to the point that they were not a concern. Now he is on a 3-medication cocktail plus a rescue med and he has lots of petit mal seizures and about every 2 weeks a grand mal seizure.

We have a long list of relatives and frames named as Successor Guardians for when we are gone and only hope it works out. When he gets out of school we hope to find some type of living arrangement to give us respite and him stability should something happen to us. Right now, have no idea what that will be. We have learned to take one day at a time.

I guess what I am trying to say is that in our experience this success story is unusual. Most kids never develop. I am referring to autism, which it appears Owen has a severe, but not the most severe case as he has made remarkable progress that parents like my wife and I used to hope for. This is in stark contrast to Asperger's which all autism conferences and seminars end up addressing leaving us parents with what I would call true autistic children without much support. I would not make light of anyone's disability as I know Asperger's is challenging. But most of those folks lead independent lives. I use the analogy that Asperger's is like having a sprained ankle compared to an autistic child which would be a paraplegic. It is just a whole other World. Thankfully, it appears they are finally going to separate Asperger's from the Autism Spectrum because there is very little overlap between the two. I went to an Autism Dad's support group and these Fathers could not believe what they were hearing as their kids had Asperger's.

I sincerely tip my hat to you.

I teach 80 kids math every day in a local middle school.

I happen to hold additional certification for ASD and I really respect the challenging daily work you and your wife face.

Good luck. Keep asking for and accepting help.

[oldfatslow]

Some lady commented on this story and I copied down her statement "Thank you for sharing such a beautiful story--it shows the resilience, creativity, and need for connection of the human spirit. It is a reminder that we don't know what we think we know about disability. It is also a reminder to assume better of those we don't understand and to meet them where they are."

Prayers to all those who live in this spectrum and to all the caregivers who love them.

[DreaminJohn]

Well Louis, I suppose should first thank you for reducing me to a crying mess here as my wife naps and my 12 yr old autistic son is singing Elmo's song at the top of his lungs for about the 50th of what will surely be 120 times today. I've often said I would give up many years of my life for just a glimpse inside his head so I could reach him.

My standard response for anyone who inquires about Stephen has become, "he's difficult, but you don't love him any less".

Thanks for sharing.

[Joel]

dekindy

Same --exact-- situation at our house. Exact - exact. Our son is 20 and they didn't think he'd make it this long.

I could write pages and pages on all of this, but simply say that every day is a gift and there are days where I --really-- need a bike ride to destress from it.

My wife is the expert on all the ins and outs of the drug cocktails and treatment attempts - if you ever want to chat happy to do so.

To the rest of the board - let's just say that dealing with this stuff everyday keeps you from being too obsessed over a gram or two of rotating weight!

Joel

[buddybikes]

We have a daugher with aspergers, age 24. College graduate but due to hyper sensitity and migraines cannot work full time. Thing is, kids with autism spectrum become adults - and the support - psychologists etc disappear.

[jmoore]

I have a 6.5yo special needs son. His genetic disorder shows some autistic tendencies. It is hard to care for him. Damn hard. Anyone else who has to deal with it knows how hard. If you don't, you cannot imagine.

I can't watch that story. A breakthrough is not in the cards for my son unfortunately. It would depress me too much to compare him to other kids who are higher functioning.

Sent from my Nexus 7 using Tapatalk now Free ('http://tapatalk.com/m?id=10')

[JasonF]

wow, so many comments hit home. Here's our son Lucas, on the "moderate to severe" end of the spectrum. He's loves riding our tandem.

Sometimes he's wonderful and other times it takes literally all our physical and emotional strength to stop him from hurting himself and others. Along the way, we've learned alot about what unconditional love truly means.

Like DreaminJohn's son, Lucas can plan the same song over hundreds of times and not get sick of it. Lately it's been Strawberry Fields by the Beatles. I can live with that.

We have a friend (whose brother is severely autistic) who is a session musician and has played with Stephen Stills who ironically also has a son on the spectrum.

When asked to describe what it's like to have a child with autism, Stills' simply reply is:

"it's a strange gift"

[bironi]

I'm not posting this to rain on anybody's parade. I just read it this morning and found interesting and very sad. It is related to the autism spectrum, but choose for yourself if you are up to a tough read.

http://www.newyorker.com/reporting/2014/03/17/140317fa_fact_solomon

[Louis]

I'm not posting this to rain on anybody's parade. I just read it this morning and found interesting and very sad. It is related to the autism spectrum, but choose for yourself if you are up to a tough read.

Thanks goodness only a very small % of kids or adults anywhere on the spectrum are ever a real danger to society. Adam clearly was, and all his victims and their families paid the price (including his mother and father).

[bironi]

Louis,
Thanks for the good read in the NYT.
Byron