Re: An A-haa Story to Share

[Guest guest]

Read this with tears....

Yesterday, as I was sitting at the table with (10 years old) and her ABA therapist, and I wonder what must have been thinking... how easy it is for me to talk to her therapist about her right in front of her and how many times I've done that... and it really hit me!

Heidi

[Guest guest]

Oh, that's so intelligent, and so sad. But now he's communicated how he feels and you can help him with it. Kudos to you for helping him find a way to express such complex thoughts and feelings!Sent from my iPhone

My son is 27. He has his ongoing obsessions, which I attribute to the Autism. Sometimes, the obsessions last for years, sometimes for months, or maybe a day. His current obsession (for months) has been saying "Barkley - The Dog". I tried everything. Searching for videos, buying DVD's, getting him on the Sesame Street website. It was suggested that I go on YOU-TUBE and pull up Barkley-clips.

Sure enough...he kept searching until he found the clip where MARIA gets frustrated with Barkley and his barking & whining. says:'It must be frustrating to be the only dog on Sesame Street when no one can understand you. I wonder what it would be like to be the only human in a world full of dogs'.

He plays this clip over & over and it breaks my heart. He points to his chest while watching these video clips. It makes me cry for my son. He is SO smart and has to try to get along in this world. He has a sister a year older and a brother a year younger and watches them living their lives and he is STUCK here with the parents.

=

[Guest guest]

Tearfully I write; thankfully he has YOU to love him. Searching what our kids desire (once we come to understand their minimal communication) is a task itself. He knew his need! What a sharp young man! And you did it. You gave him a tool emotionally, that's HUGE! You gave him a tool to connect. ALL humans need to connect it's the number one need. He found one, and you took him there. Then to find it being a poignant scenario he needed.......how truthfully sad...I live with it too. Lu is 28. Our mothers heart mourns for life. Most especially at times like this when THEY let us know THEY understand.Jaylene mom to Lu 28 (I believe when they get to heaven they will be free of this insidious autism.)To: Sent: Monday, March 5, 2012 12:31:53 PMSubject: An A-haa Story to Share

My son is 27. He has his ongoing obsessions, which I attribute to the Autism. Sometimes, the obsessions last for years, sometimes for months, or maybe a day. His current obsession (for months) has been saying "Barkley - The Dog". I tried everything. Searching for videos, buying DVD's, getting him on the Sesame Street website. It was suggested that I go on YOU-TUBE and pull up Barkley-clips.

Sure enough...he kept searching until he found the clip where MARIA gets frustrated with Barkley and his barking & whining. says:'It must be frustrating to be the only dog on Sesame Street when no one can understand you. I wonder what it would be like to be the only human in a world full of dogs'.

He plays this clip over & over and it breaks my heart. He points to his chest while watching these video clips. It makes me cry for my son. He is SO smart and has to try to get along in this world. He has a sister a year older and a brother a year younger and watches them living their lives and he is STUCK here with the parents.

[Guest guest]

Wow.

Do some of our children recognize other children with

communication issues/ autism and know they are not alone? Jo could care less right now but then her

behavior shows she wants to communicate more but is frustrated.

~Melody

[Guest guest]

Elie displays some empathy for those kids or adults he perceives (by his own reckoning) to be weaker, less able, sicker, in trouble) and treats them as he would a very young child or baby.  Does he understand specifically what the issue is - I think not. 

 

Wow.

 

Do some of our children recognize other children with

communication issues/ autism and know they are not alone?  Jo could care less right now  but then her

behavior shows she wants to communicate more but is frustrated.

 

~Melody

-- Sara- different pathways lead to Nirvana.

[Guest guest]

nathan does too, he seems to know who is similar to him, disabled or weaker somehow, always pleasant to seniors and disabled, will often even hang out with them instead if at a function. shawna

http://sewshawna.blogspot.com

To: Sent: Tuesday, March 6, 2012 1:55 PMSubject: Re: Re: An A-haa Story to Share

Elie displays some empathy for those kids or adults he perceives (by his own reckoning) to be weaker, less able, sicker, in trouble) and treats them as he would a very young child or baby. Does he understand specifically what the issue is - I think not.

Wow.

Do some of our children recognize other children with communication issues/ autism and know they are not alone? Jo could care less right now but then her behavior shows she wants to communicate more but is frustrated.

~Melody

-- Sara- different pathways lead to Nirvana.

[Guest guest]

Does your son have an AAC device to assist him with communication? Are there activities that he enjoys that he can attend with supports other than with his parents? He seems like a very bright guy and I too felt sad reading your post. CharlyneSubject: An A-haa Story to ShareTo: Date: Monday, March 5, 2012, 3:31 PM

My son is 27. He has his ongoing obsessions, which I attribute to the Autism. Sometimes, the obsessions last for years, sometimes for months, or maybe a day. His current obsession (for months) has been saying "Barkley - The Dog". I tried everything. Searching for videos, buying DVD's, getting him on the Sesame Street website. It was suggested that I go on YOU-TUBE and pull up Barkley-clips.

Sure enough...he kept searching until he found the clip where MARIA gets frustrated with Barkley and his barking & whining. says:'It must be frustrating to be the only dog on Sesame Street when no one can understand you. I wonder what it would be like to be the only human in a world full of dogs'.

He plays this clip over & over and it breaks my heart. He points to his chest while watching these video clips. It makes me cry for my son. He is SO smart and has to try to get along in this world. He has a sister a year older and a brother a year younger and watches them living their lives and he is STUCK here with the parents.

[Guest guest]

My heart goes out to you. I too watch my son, DS/ASD/Epilepsy, who will be 21, watch shows and see kids at the malls and want to be like they are and knows he can never be. He can never go out alone and just "hang-out" with his friends because he really doesn't have any. He too sits at home with us night after night unless we take him somewhere. We've had him in Special Olympics, etc....., but he usually drops out after refusing to go anymore. We had him at a private school for four years after his refusal to go to school and missed a year and a half. What hurts me most is when I decided to bring him home, his father (we are divorced) did not want me too and has had little interest in his life. Right now he has been in Key West for a month! has been becoming

harder to handle because he wants to see his dad and what can I tell him?He too has obsessions, especially about clothes. He gets on an outfit and will wear that same outfit for a week if I let him. Then I have to get it away from him to wash and hide for a while. He is very methodical. I hope things get better for you. I am open to any ideas that could help us., mother of , 21 DS/ASD/Epilepsy To:

Sent: Tuesday, March 6, 2012 10:29 PM Subject: Re: An A-haa Story to Share

Does your son have an AAC device to assist him with communication? Are there activities that he enjoys that he can attend with supports other than with his parents? He seems like a very bright guy and I too felt sad reading your post. CharlyneSubject: An A-haa Story to ShareTo: Date: Monday, March 5, 2012, 3:31 PM

My son is 27. He has his ongoing obsessions, which I attribute to the Autism. Sometimes, the obsessions last for years, sometimes for months, or maybe a day. His current obsession (for months) has been saying "Barkley - The Dog". I tried everything. Searching for videos, buying DVD's, getting him on the Sesame Street website. It was suggested that I go on YOU-TUBE and pull up Barkley-clips.

Sure enough...he kept searching until he found the clip where MARIA gets frustrated with Barkley and his barking & whining. says:'It must be frustrating to be the only dog on Sesame Street when no one can understand you. I wonder what it would be like to be the only human in a world full of dogs'.

He plays this clip over & over and it breaks my heart. He points to his chest while watching these video clips. It makes me cry for my son. He is SO smart and has to try to get along in this world. He has a sister a year older and a brother a year younger and watches them living their lives and he is STUCK here with the parents.

[Guest guest]

WOW!!! - thanks to ALL of you...I hadn't checked back in awhile.

We feel each others pain I felt like a horses-behind when he found a way to

tell me this after 27 years. I always knew he would have been a

'high-functioning' DS boy, if it hadn't been for the curse of the Autism. Made

me realize how many times we have talked about him in 'the 3rd person', as

though he wasn't even in the room. How many times I have hushed him or hurried

him as if I didn't have the patience to understand, or the desire to understand,

as I'm sure that is how he interpreted it. The old joke that 'OBVIOUS isn't a

word in the dictionary'...just to get someone to go look it up and prove you

wrong...and the joke is on them. Now, the not-so-funny joke is on me.

I have always known that there is not much I say to him that he didn't

understand, but I never put 2 & 2 together. I'm more than a little ashamed of

myself and all of our family. He is so easy to dismiss or get impatient with.

His SIBS are VERY impatient with him and seem to think we spoil him.

I thought of a communication device years ago. In the interim of being

frustrated by 'the system' in getting funding for one, I started having him TYPE

his thoughts, at the end of each day, into a WORD document that we would read

together, but his writings were very fragmented. I realize NOW that this was

him sharing his feelings, but I wasn't reading the writing on the wall. He

wrote 'Barkley the Dog', but I thought he was just referencing TV shows that he

enjoyed from childhood.

RE Compassion: YES - he seems so in-tune to the UNDERDOG. He reaches out to

the elderly, the wheelchair-bound, and he cries if he hears a baby cry. I tell

him that this is the baby's way of communicating, but I now realize he was

displaying empathy all along: No way to communicate needs. I will stop for

now. Too emotional. Too intense.

Thanks for reading - Sara

>

>

> >

> >Subject: An A-haa Story to Share

> >To:

> >Date: Monday, March 5, 2012, 3:31 PM

> >

> >

> > 

> >My son is 27. He has his ongoing obsessions, which I attribute to the

Autism. Sometimes, the obsessions last for years, sometimes for months, or

maybe a day. His current obsession (for months) has been saying " Barkley - The

Dog " . I tried everything. Searching for videos, buying DVD's, getting him on

the Sesame Street website. It was suggested that I go on YOU-TUBE and pull up

Barkley-clips.

> >

> >Sure enough...he kept searching until he found the clip where MARIA gets

frustrated with Barkley and his barking & whining. says:'It must be

frustrating to be the only dog on Sesame Street when no one can understand you.

I wonder what it would be like to be the only human in a world full of dogs'.

> >

> >He plays this clip over & over and it breaks my heart. He points to his

chest while watching these video clips. It makes me cry for my son. He is SO

smart and has to try to get along in this world. He has a sister a year older

and a brother a year younger and watches them living their lives and he is STUCK

here with the parents.

> >

> >

>

[Guest guest]

It's never too late. We are always learning and this group is the best resource. The technology boom was just beginning to surface in schools when your son was a younger student. There was little initiative and lower expectation for students with severe disabilities. They were not regarded and respected as students. It's not too late to contact your son's case worker to request funding for an IPAD and training. Your son also needs time to process a request or to communicate. Most with DS and autism have executive functioning issues. They process information at a slower rate and the thought process can be fragmented. They certainly understand but the response is delayed. No one should ever talk about a person, as if they are invisible, regardless of their abilities. Respect is a civil right that should be offered to every person. I am pleased that you

realized that your boy is smart. Communication will offer him some purpose to his life. Hopefully you will find some community activities that he can participate in and looks forward to. Charlyne Subject: Re: An A-haa Story to ShareTo: Date: Thursday, March 15, 2012, 6:23 PM

WOW!!! - thanks to ALL of you...I hadn't checked back in awhile.

We feel each others pain I felt like a horses-behind when he found a way to tell me this after 27 years. I always knew he would have been a 'high-functioning' DS boy, if it hadn't been for the curse of the Autism. Made me realize how many times we have talked about him in 'the 3rd person', as though he wasn't even in the room. How many times I have hushed him or hurried him as if I didn't have the patience to understand, or the desire to understand, as I'm sure that is how he interpreted it. The old joke that 'OBVIOUS isn't a word in the dictionary'...just to get someone to go look it up and prove you wrong...and the joke is on them. Now, the not-so-funny joke is on me.

I have always known that there is not much I say to him that he didn't understand, but I never put 2 & 2 together. I'm more than a little ashamed of myself and all of our family. He is so easy to dismiss or get impatient with. His SIBS are VERY impatient with him and seem to think we spoil him.

I thought of a communication device years ago. In the interim of being frustrated by 'the system' in getting funding for one, I started having him TYPE his thoughts, at the end of each day, into a WORD document that we would read together, but his writings were very fragmented. I realize NOW that this was him sharing his feelings, but I wasn't reading the writing on the wall. He wrote 'Barkley the Dog', but I thought he was just referencing TV shows that he enjoyed from childhood.

RE Compassion: YES - he seems so in-tune to the UNDERDOG. He reaches out to the elderly, the wheelchair-bound, and he cries if he hears a baby cry. I tell him that this is the baby's way of communicating, but I now realize he was displaying empathy all along: No way to communicate needs. I will stop for now. Too emotional. Too intense.

Thanks for reading - Sara

>

>

> >

> >Subject: An A-haa Story to Share

> >To:

> >Date: Monday, March 5, 2012, 3:31 PM

> >

> >

> >Â

> >My son is 27. He has his ongoing obsessions, which I attribute to the Autism. Sometimes, the obsessions last for years, sometimes for months, or maybe a day. His current obsession (for months) has been saying "Barkley - The Dog". I tried everything. Searching for videos, buying DVD's, getting him on the Sesame Street website. It was suggested that I go on YOU-TUBE and pull up Barkley-clips.

> >

> >Sure enough...he kept searching until he found the clip where MARIA gets frustrated with Barkley and his barking & whining. says:'It must be frustrating to be the only dog on Sesame Street when no one can understand you. I wonder what it would be like to be the only human in a world full of dogs'.

> >

> >He plays this clip over & over and it breaks my heart. He points to his chest while watching these video clips. It makes me cry for my son. He is SO smart and has to try to get along in this world. He has a sister a year older and a brother a year younger and watches them living their lives and he is STUCK here with the parents.

> >

> >

>