Re: death and Asperger's

November 15, 2009

Hi I am very sorry for your lost,my prayers are with you and your family Angel Blessings

From: Lindsey sen <5kidswdisabilities@...>Subject: ( ) death and Asperger's Date: Saturday, November 14, 2009, 12:33 PM

I recently came across this situation myself. My brother, age 52, has autism. I took him to see our mother a few weeks ago when she was still coherent enough to recognize him. Because he is also deaf and legally blind, I had to write a note in large print "Mom is going to die soon. You have to say good-bye today." I positioned him so he could hold her hand, and then made his kiss her and say good bye. He took shook her hand and said "Bye now. It was nice knowing you. Let me know when your funeral is and I might want to come."

My mom actually passed away this morning and I am wondering how he will behave at the funeral!

Lindsey sen

http://5kidswdisabi lities.wordpress .com

November 15, 2009

Sorry for your loss. I hope he does well at the funeral.

I tried to explain it to my son...here's part of the dialog

Me: We won't be able to see GG anymore, she is up in heaven with the angels

A: Is that in Illinois?

Me: No, it's up a above the clouds

A: In the solar system..is it near Venus?

Ugh.

We have decided to not bring him to the services.

Thanks

TJ

>

> *I recently came across this situation myself. My brother, age 52, has

> autism. I took him to see our mother a few weeks ago when she was still

> coherent enough to recognize him. Because he is also deaf and legally blind,

> I had to write a note in large print " Mom is going to die soon. You have to

> say good-bye today. " I positioned him so he could hold her hand, and then

> made his kiss her and say good bye. He took shook her hand and said " Bye

> now. It was nice knowing you. Let me know when your funeral is and I

> might want to come. " *

> *My mom actually passed away this morning and I am wondering how he will

> behave at the funeral!*

>

> Lindsey sen

> http://5kidswdisabilities.wordpress.com

>

November 15, 2009

Do other people who will be at the funeral know of your brother's disabilities?

Maybe you can take him a bit early and do anything traditional that you feel he

needs to do then take him all the way a seat in the back so if he needs to leave

you can discreetly take him out for a break or just take him home.

I expect there will be people observing what he's doing and what you're doing.

If they criticize you on the day of your mother's funeral they are very

cold-hearted. See if you can make a plan in advance for if he starts having a

bad time. I haven't been through this since was old enough to understand

what a funeral was but my mom is getting pretty frail so I expect it won't be

too long before I'll have to deal with it. wasn't even 3 when my dad died

and he wasn't all that close to my dad so it didn't really seem to register with

him. Grandma dying might be more difficult.

Miriam

>

> *I recently came across this situation myself. My brother, age 52, has

> autism. I took him to see our mother a few weeks ago when she was still

> coherent enough to recognize him. Because he is also deaf and legally blind,

> I had to write a note in large print " Mom is going to die soon. You have to

> say good-bye today. " I positioned him so he could hold her hand, and then

> made his kiss her and say good bye. He took shook her hand and said " Bye

> now. It was nice knowing you. Let me know when your funeral is and I

> might want to come. " *

> *My mom actually passed away this morning and I am wondering how he will

> behave at the funeral!*

>

> Lindsey sen

> http://5kidswdisabilities.wordpress.com

>

November 16, 2009

Firstly, you're both great because this is a difficult time and your concerns are about others and how they will feel / cope. We have had a couple of funerals recently, we had one sudden death when my son was 4, just told him straight uncle had died, so we would go to a funeral to say goodbye, in the event we sat right at the back and nipped out the back door just before the service started, then came back in just after it finished, everyone still thinks that G sat very quietly throught the whole thing.

This year both his great grand parents died within a couple of months of each other, we kinda told him that they had fallen asleep and dreamt that they were both young again and having great fun together so they had decided to stay asleep. For the funerals we sat at the back again, armed with a packet of wine gums to stop G from speaking too much. Everthing went without a hitch. Hope any of this helps, the most important thing I would say is it is a stressfull enough time, don't put yourself under more pressure. Your child. brother will cope with the day in their own way, even at the time if it seems things aren't going right in years to come it will probably bring a smile to your face.

From: juice011111 <juice00000@...>Subject: ( ) Re: death and Asperger's Date: Sunday, 15 November, 2009, 13:59

Sorry for your loss. I hope he does well at the funeral.I tried to explain it to my son...here's part of the dialogMe: We won't be able to see GG anymore, she is up in heaven with the angelsA: Is that in Illinois?Me: No, it's up a above the cloudsA: In the solar system..is it near Venus?Ugh.We have decided to not bring him to the services.ThanksTJ>> *I recently came across this situation myself. My brother, age 52, has> autism. I took him to see our mother a few weeks ago when she was still> coherent enough to recognize him. Because he is also deaf and legally blind,> I had to write a note in large

print "Mom is going to die soon. You have to> say good-bye today." I positioned him so he could hold her hand, and then> made his kiss her and say good bye. He took shook her hand and said "Bye> now. It was nice knowing you. Let me know when your funeral is and I> might want to come." *> *My mom actually passed away this morning and I am wondering how he will> behave at the funeral!*> > Lindsey sen> http://5kidswdisabi lities.wordpress .com>

November 16, 2009

Lindsey, I am so sorry that you just lost your mother and have to deal

with your brother on top of everything else. How did the funeral go if

it was already held?

What a timely discussion for me. Last week, my father died after a 3

week battle with cancer. It went so fast that I am still in a state of

shock and of course, no time to think things through or prepare with

the kids either. I was feeling good if I breathed in and out each day

and kept myself in one piece.

If I had to do it again, I would have spent more time talking to my

boys about death and dying and funeral's - the actual mechanics of it

all. My youngest was very upset at the funeral and he spent hours

hiding in the car after that. I know how he felt. But once he could

ask questions, his questions were about the mechanics of dying. He

wanted to know things like, " What part of grandpa stopped working? " My

father was also cremated so we had those obvious questions to face.

My 13 yo (hfa) was a mix of autism and compassion. lol. He could tell

I was very upset and often put his arm around me and patted my back.

But many other times, autism was in full force. For instance, when we

took the kids to see my father before he died, my ds said, " Hello

Grandfather, may you rest in peace. " He was in the right sort of area

in fishing for what to say but of course, a bit premature. (Yes, we

all laugh about it and my older brother finally realized how " special "

our ds is....lol) I should have prepped him and discussed what things

one says. But I was so shocked myself about what was happening to my

dad that I could not think about dealing with autism issues until they

were there in my face. It was ok though - my dad was very Aspie and

said some things that were a bit off the wall as well and had a lot of

sensory issues at the end.

At the funeral, again I was unprepared and did not " prep " him in

advance. He got bored and then would wrap his legs around his neck in

the pew. I had to keep telling him to sit right. We went to the

cemetery and had a small prayer service and when we got back in my car,

he said, " So! Whose up for some Arby's? " lol. It's funny now but at

the time, I was ready to choke him. He kept making comments like that

at the worst times. So I should have gone over the schedule with him

and wrote it down as well so he knew better when he would eat next (an

obsession he has).

But you know, we sometimes have these things thrown at us and we can't

plan or don't think to plan.

Roxanna

" The only thing necessary for the triumph of evil is for good men to do

nothing. " E. Burke

( ) death and Asperger's

I recently came across this situation myself. Â My brother, age 52, has

autism. I took him to see our mother a few weeks ago when she was still

coherent enough to recognize him. Because he is also deaf and legally

blind, I had to write a note in large print " Mom is going to die soon.

Â You have to say good-bye today. " Â I positioned him so he could hold

her hand, and then made his kiss her and say good bye. Â He took shook

her hand and said " Bye Â now. Â It was nice knowing you. Â Let me know

when your funeral is and I might want to come. " Â

My mom actually passed away this morning and I am wondering how he will

behave at the funeral!

Lindsey sen

http://5kidswdisabilities.wordpress.com

November 16, 2009

Thank you for your supportive words. I think as moms we sometimes spend so much time focusing on our kids that it is hard to focus on ourselves. It is hard to mourn when I worry about how the kids and my brother will react. Any one of them could have a serious melt-down. I have a couple of aides coming who could take them off quietly if they become a problem. It is so hard worrying about them at a time like this.

I liked your idea about discussing what to expect with them first. The funeral will be Thursday, (to allow my oldest son time to fly in from California,) but I am going to take the kids the night before so they can see the casket and the room and prepare them for the funeral the next day. I am most concerned about my brother's behavior because he will be first with me in the receiving line. I guess I can't really care if he says anything inappropriate because he is what he is and if people don't understand I can't worry about it. (I did make sure we are going to a restaurant afterwards to have pie, which is a primary motivation for him to behave.)

Lindsey sen

http://5kidswdisabilities.wordpress.com

November 16, 2009

I wondered where you were, Roxanna. I was worried about you! I'm so sorry to hear about your dad. I know there's a fine line between trying to prepare your kids for something like this and only giving them what they can handle. And when you're dealing with kids who have problems communicating, it makes it even harder.

My son (13, Aspergers) has had to deal with the death of 3 great-grandparents now. The first one, 5 years ago, was how we learned what we needed to say/do to help him through the process. We quickly realized it was not a good idea to have him at the viewing (it was too much) and being at the cemetery was also kind of hard so he sat in the car. The next year we lost another one, and he still didn't view the body but did sit outside at the gravesite with the family for part of the time. This past year, he again didn't view the body (he'd tell you "I'd rather remember him the way he looked when he was alive." - who can argue with that?) but had no problem being with the family at the gravesite. I guess I'm saying all of this to show things can change as they get older. I know that's not always the case, but it can. We've tried to never push him too hard when he wasn't comfortable, but had a few hard expectations about

his participation (like, he had to be there, even though he didn't have to participate in every part.)

Anyway, Roxanna, I'm glad to see you're okay and again, I'm sorry for your loss. Hang in there, friend.

"Over-optimism is waiting for you ship to come in when you haven't sent one out."

From: Roxanna <MadIdeas@...> Sent: Mon, November 16, 2009 8:30:51 AMSubject: Re: ( ) death and Asperger's

Lindsey, I am so sorry that you just lost your mother and have to deal with your brother on top of everything else. How did the funeral go if it was already held?What a timely discussion for me. Last week, my father died after a 3 week battle with cancer. It went so fast that I am still in a state of shock and of course, no time to think things through or prepare with the kids either. I was feeling good if I breathed in and out each day and kept myself in one piece.If I had to do it again, I would have spent more time talking to my boys about death and dying and funeral's - the actual mechanics of it all. My youngest was very upset at the funeral and he spent hours hiding in the car after that. I know how he felt. But once he could ask questions, his questions were about the mechanics of dying. He wanted to know things like, "What part of grandpa stopped working?" My father was also

cremated so we had those obvious questions to face.My 13 yo (hfa) was a mix of autism and compassion. lol. He could tell I was very upset and often put his arm around me and patted my back. But many other times, autism was in full force. For instance, when we took the kids to see my father before he died, my ds said, "Hello Grandfather, may you rest in peace." He was in the right sort of area in fishing for what to say but of course, a bit premature. (Yes, we all laugh about it and my older brother finally realized how "special" our ds is....lol) I should have prepped him and discussed what things one says. But I was so shocked myself about what was happening to my dad that I could not think about dealing with autism issues until they were there in my face. It was ok though - my dad was very Aspie and said some things that were a bit off the wall as well and had a lot of sensory issues at the

end.At the funeral, again I was unprepared and did not "prep" him in advance. He got bored and then would wrap his legs around his neck in the pew. I had to keep telling him to sit right. We went to the cemetery and had a small prayer service and when we got back in my car, he said, "So! Whose up for some Arby's?" lol. It's funny now but at the time, I was ready to choke him. He kept making comments like that at the worst times. So I should have gone over the schedule with him and wrote it down as well so he knew better when he would eat next (an obsession he has).But you know, we sometimes have these things thrown at us and we can't plan or don't think to plan.Roxanna"The only thing necessary for the triumph of evil is for good men to do nothing." E. Burke ( ) death and Asperger'sI recently came across this situation myself. My brother, age 52, has autism. I took him to see our mother a few weeks ago when she was still coherent enough to recognize him. Because he is also deaf and legally blind, I had to write a note in large print "Mom is going to die soon. You have to say good-bye today." I positioned him so he could hold her hand, and then made his kiss her and say good bye. He took shook her hand and said "Bye now. It was nice knowing you. Let me know when your funeral is and I might want to

come." My mom actually passed away this morning and I am wondering how he will behave at the funeral!Lindsey senhttp://5kidswdisabilities.wordpress.com

November 16, 2009

Thank you for the supportive words.

On Mon, Nov 16, 2009 at 6:42 AM, Lorraine son <lorrainedavidson12@...> wrote:

Firstly, you're both great because this is a difficult time and your concerns are about others and how they will feel / cope. We have had a couple of funerals recently, we had one sudden death when my son was 4, just told him straight uncle had died, so we would go to a funeral to say goodbye, in the event we sat right at the back and nipped out the back door just before the service started, then came back in just after it finished, everyone still thinks that G sat very quietly throught the whole thing.

This year both his great grand parents died within a couple of months of each other, we kinda told him that they had fallen asleep and dreamt that they were both young again and having great fun together so they had decided to stay asleep. For the funerals we sat at the back again, armed with a packet of wine gums to stop G from speaking too much. Everthing went without a hitch. Hope any of this helps, the most important thing I would say is it is a stressfull enough time, don't put yourself under more pressure. Your child. brother will cope with the day in their own way, even at the time if it seems things aren't going right in years to come it will probably bring a smile to your face.

November 16, 2009

Gosh, I am so sorry to learn of everyone's losses. : (

Yes, it is so very difficult to lose someone close to us. Then to throw into the

mix children; especially those with a developmental difference like AS...

We lost our daughter, 13 years of age, in 2006. I'd never lost anyone close to

me before, let alone my child. Her brothers were 15, 13, 10 and 8 at the time.

All of us were devestated. Our son who is described as " Aspergers-like " was

particularly vulnerable for so many reasons... For one, our little girl died of

sudden cardiac arrest so all of us had to undergo extensive testing to ensure

that none of us harboured a hidden heart defect (thankfully, none of us do.) As

we awaited the final medical report - which took half a year - our son who

utilized medicine to help with focus, was removed from it just in case there

might be any heart link. It was a terrible year for him in school. He has been

doing well for the past year. Of all the children, it is him who randomly will

start chatting about his sister and become most tearful. We all miss

tremendously, but we continue to talk about her all the time and let the boys

know that it is okay to do so as well. I don't know that there are any magical

answers to make pain like this fade.

One of the things that we did when we knew would not 'make it' was tape

a penny to her hand... This signifies the 'Pennies from Heaven' story: When you

find a penny, it is not simply one discarded lying on the ground, they are found

from angels who throw them down. To let you know that they are thinking of

you...

I cannot tell you how many coins we have found: Our children, 's

teachers, etcetera. : )

You may want to tell your own loved ones about this little story of the penny so

that their own angels will let them know that they are still with them.

God Bless!

Love,

Velvet

Administrator for Tetrasomy 18p Canada

http://www.tetrasomy18p.ca/

" 's Syndrome "

November 16, 2009

I lost a first cousin to sudden cardiac arrest when he was 21 and I was 17. He was an otherwise healthy man, failing his physical to play college football only b/c his knees were a little too shot after 4 years of high school football. Greg was my dad's twin brother's oldest son. To this day, 19 years later, we still talk about Greg. My aunt/uncle and cousins all appreciate when we bring up his name and remember a story of him with the family. The unexpected loss of someone young is so difficult. I encourage anyone who has experienced a loss to continue talking about the person when it's appropriate. When the topic is avoided, it almost makes things more difficult b/c it's the elephant in the room.

"Over-optimism is waiting for you ship to come in when you haven't sent one out."

From: tdhssp <johnvel@...> Sent: Mon, November 16, 2009 9:31:16 AMSubject: Re: ( ) death and Asperger's

Gosh, I am so sorry to learn of everyone's losses. : (Yes, it is so very difficult to lose someone close to us. Then to throw into the mix children; especially those with a developmental difference like AS...We lost our daughter, 13 years of age, in 2006. I'd never lost anyone close to me before, let alone my child. Her brothers were 15, 13, 10 and 8 at the time. All of us were devestated. Our son who is described as "Aspergers-like" was particularly vulnerable for so many reasons... For one, our little girl died of sudden cardiac arrest so all of us had to undergo extensive testing to ensure that none of us harboured a hidden heart defect (thankfully, none of us do.) As we awaited the final medical report - which took half a year - our son who utilized medicine to help with focus, was removed from it just in case there might be any heart link. It was a terrible year for him in school. He has been doing well for the past year. Of all

the children, it is him who randomly will start chatting about his sister and become most tearful. We all miss tremendously, but we continue to talk about her all the time and let the boys know that it is okay to do so as well. I don't know that there are any magical answers to make pain like this fade.One of the things that we did when we knew would not 'make it' was tape a penny to her hand... This signifies the 'Pennies from Heaven' story: When you find a penny, it is not simply one discarded lying on the ground, they are found from angels who throw them down. To let you know that they are thinking of you...I cannot tell you how many coins we have found: Our children, 's teachers, etcetera. : )You may want to tell your own loved ones about this little story of the penny so that their own angels will let them know that they are still with them.God

Bless!Love,VelvetAdministrator for Tetrasomy 18p Canadahttp://www.tetrasomy18p.ca/"'s Syndrome"

November 16, 2009

I realize they might not be helpful now, but perhaps it might be in the future. We have had four deaths in the family since the kid was born. The first was my grandfather and the kid was two and blissfully unaware. The second was my great uncle (we are a close family) I was crushed but he was fascinated. This was before he was diagnosed and he was about 8. I had to stop him from going up to the coffin. Two years ago (he was 10, still before the diagnosis) my great aunt had a sudden turn in health and died very quickly with the family around her (the kid was in the waiting room). She didn't like my son so he was completely unattached and I found an opportunity. He had come in and seen her before she died and he came in with her body and we sat and

discussed all of his questions. We waited with her body till the funeral home came for her. We walked down with the person from the home and the kid was able to ask lots of questions and again when we were able to view her as a family. I have to tell you that this has done wonders for his comprehension of the process. This summer my other grandfather died in a very traumatic way and the kid was able to be with us for the whole 8 week process. Having gone through the death of my aunt made it much easier for him to handle. I know it might not be possible to arrange for something like what happened with my aunt but I would encourage it if your kid can handle it so they can ask all those questions that are so much more difficult and sometimes inappropriate.Becky From: MacAllister <smacalli@...> Sent: Mon, November 16, 2009 9:14:34 AMSubject: Re: ( ) death and Asperger's

I wondered where you were, Roxanna. I was worried about you! I'm so sorry to hear about your dad. I know there's a fine line between trying to prepare your kids for something like this and only giving them what they can handle. And when you're dealing with kids who have problems communicating, it makes it even harder.

My son (13, Aspergers) has had to deal with the death of 3 great-grandparents now. The first one, 5 years ago, was how we learned what we needed to say/do to help him through the process. We quickly realized it was not a good idea to have him at the viewing (it was too much) and being at the cemetery was also kind of hard so he sat in the car. The next year we lost another one, and he still didn't view the body but did sit outside at the gravesite with the family for part of the time. This past year, he again didn't view the body (he'd tell you "I'd rather remember him the way he looked when he was alive." - who can argue with that?) but had no problem being with the family at the gravesite. I guess I'm saying all of this to show things can change as they get older. I know that's not always the case, but it can. We've tried to never push him too hard when he wasn't comfortable, but had a few hard expectations about

his participation (like, he had to be there, even though he didn't have to participate in every part.)

Anyway, Roxanna, I'm glad to see you're okay and again, I'm sorry for your loss. Hang in there, friend.

"Over-optimism is waiting for you ship to come in when you haven't sent one out."

From: Roxanna <MadIdeasaol (DOT) com> Sent: Mon, November 16, 2009 8:30:51 AMSubject: Re: ( ) death and Asperger's

Lindsey, I am so sorry that you just lost your mother and have to deal with your brother on top of everything else. How did the funeral go if it was already held?What a timely discussion for me. Last week, my father died after a 3 week battle with cancer. It went so fast that I am still in a state of shock and of course, no time to think things through or prepare with the kids either. I was feeling good if I breathed in and out each day and kept myself in one piece.If I had to do it again, I would have spent more time talking to my boys about death and dying and funeral's - the actual mechanics of it all. My youngest was very upset at the funeral and he spent hours hiding in the car after that. I know how he felt. But once he could ask questions, his questions were about the mechanics of dying. He wanted to know things like, "What part of grandpa stopped working?" My father was also

cremated so we had those obvious questions to face.My 13 yo (hfa) was a mix of autism and compassion. lol. He could tell I was very upset and often put his arm around me and patted my back. But many other times, autism was in full force. For instance, when we took the kids to see my father before he died, my ds said, "Hello Grandfather, may you rest in peace." He was in the right sort of area in fishing for what to say but of course, a bit premature. (Yes, we all laugh about it and my older brother finally realized how "special" our ds is....lol) I should have prepped him and discussed what things one says. But I was so shocked myself about what was happening to my dad that I could not think about dealing with autism issues until they were there in my face. It was ok though - my dad was very Aspie and said some things that were a bit off the wall as well and had a lot of sensory issues at the

end.At the funeral, again I was unprepared and did not "prep" him in advance. He got bored and then would wrap his legs around his neck in the pew. I had to keep telling him to sit right. We went to the cemetery and had a small prayer service and when we got back in my car, he said, "So! Whose up for some Arby's?" lol. It's funny now but at the time, I was ready to choke him. He kept making comments like that at the worst times. So I should have gone over the schedule with him and wrote it down as well so he knew better when he would eat next (an obsession he has).But you know, we sometimes have these things thrown at us and we can't plan or don't think to plan.Roxanna"The only thing necessary for the triumph of evil is for good men to do nothing." E. Burke ( ) death and Asperger'sI recently came across this situation myself. My brother, age 52, has autism. I took him to see our mother a few weeks ago when she was still coherent enough to recognize him. Because he is also deaf and legally blind, I had to write a note in large print "Mom is going to die soon. You have to say good-bye today." I positioned him so he could hold her hand, and then made his kiss her and say good bye. He took shook her hand and said "Bye now. It was nice knowing you. Let me

know when your funeral is and I might want to

come." My mom actually passed away this morning and I am wondering how he will behave at the funeral!Lindsey senhttp://5kidswdisabi lities.wordpress .com

November 16, 2009

Yes, I was also wondering how the funeral went for you and your fam? Sorry about your loss.

Roxanna, I was wondering why you were "missing" for a while. So very sorry. Darn, so fast.

Hugs to you both.

Robin

From: Roxanna <MadIdeas@...>Subject: Re: ( ) death and Asperger's Date: Monday, November 16, 2009, 8:30 AM

Lindsey, I am so sorry that you just lost your mother and have to deal with your brother on top of everything else. How did the funeral go if it was already held?What a timely discussion for me. Last week, my father died after a 3 week battle with cancer. It went so fast that I am still in a state of shock and of course, no time to think things through or prepare with the kids either. I was feeling good if I breathed in and out each day and kept myself in one piece.If I had to do it again, I would have spent more time talking to my boys about death and dying and funeral's - the actual mechanics of it all. My youngest was very upset at the funeral and he spent hours hiding in the car after that. I know how he felt. But once he could ask questions, his questions were about the mechanics of dying. He wanted to know things like, "What part of grandpa stopped working?" My father was also

cremated so we had those obvious questions to face.My 13 yo (hfa) was a mix of autism and compassion. lol. He could tell I was very upset and often put his arm around me and patted my back. But many other times, autism was in full force. For instance, when we took the kids to see my father before he died, my ds said, "Hello Grandfather, may you rest in peace." He was in the right sort of area in fishing for what to say but of course, a bit premature. (Yes, we all laugh about it and my older brother finally realized how "special" our ds is....lol) I should have prepped him and discussed what things one says. But I was so shocked myself about what was happening to my dad that I could not think about dealing with autism issues until they were there in my face. It was ok though - my dad was very Aspie and said some things that were a bit off the wall as well and had a lot of sensory issues at the

end.At the funeral, again I was unprepared and did not "prep" him in advance. He got bored and then would wrap his legs around his neck in the pew. I had to keep telling him to sit right. We went to the cemetery and had a small prayer service and when we got back in my car, he said, "So! Whose up for some Arby's?" lol. It's funny now but at the time, I was ready to choke him. He kept making comments like that at the worst times. So I should have gone over the schedule with him and wrote it down as well so he knew better when he would eat next (an obsession he has).But you know, we sometimes have these things thrown at us and we can't plan or don't think to plan.Roxanna"The only thing necessary for the triumph of evil is for good men to do nothing." E. Burke ( ) death and Asperger'sI recently came across this situation myself. My brother, age 52, has autism. I took him to see our mother a few weeks ago when she was still coherent enough to recognize him. Because he is also deaf and legally blind, I had to write a note in large print "Mom is going to die soon. You have to say good-bye today." I positioned him so he could hold her hand, and then made his kiss her and say good bye. He took

shook her hand and said "Bye now. It was nice knowing you. Let me know when your funeral is and I might want to come." My mom actually passed away this morning and I am wondering how he will behave at the funeral!Lindsey senhttp://5kidswdisabi lities.wordpress .com

November 16, 2009

What a wonderful story and beautiful words to live by, with the "Pennies from Heaven" story. I'm going to remember this always.

I remember hearing your story of your daughter before, but want to let you know, again, that I appreciate you sharing it. Sooo sorry for the passing on of your daughter.

Hugs to you.

Robin

From: tdhssp <johnvel@...>Subject: Re: ( ) death and Asperger's Date: Monday, November 16, 2009, 9:31 AM

Gosh, I am so sorry to learn of everyone's losses. : (Yes, it is so very difficult to lose someone close to us. Then to throw into the mix children; especially those with a developmental difference like AS...We lost our daughter, 13 years of age, in 2006. I'd never lost anyone close to me before, let alone my child. Her brothers were 15, 13, 10 and 8 at the time. All of us were devestated. Our son who is described as "Aspergers-like" was particularly vulnerable for so many reasons... For one, our little girl died of sudden cardiac arrest so all of us had to undergo extensive testing to ensure that none of us harboured a hidden heart defect (thankfully, none of us do.) As we awaited the final medical report - which took half a year - our son who utilized medicine to help with focus, was removed from it just in case there might be any heart link. It was a terrible year for him in school. He has been doing well for the past year. Of all

the children, it is him who randomly will start chatting about his sister and become most tearful. We all miss tremendously, but we continue to talk about her all the time and let the boys know that it is okay to do so as well. I don't know that there are any magical answers to make pain like this fade.One of the things that we did when we knew would not 'make it' was tape a penny to her hand... This signifies the 'Pennies from Heaven' story: When you find a penny, it is not simply one discarded lying on the ground, they are found from angels who throw them down. To let you know that they are thinking of you...I cannot tell you how many coins we have found: Our children, 's teachers, etcetera. : )You may want to tell your own loved ones about this little story of the penny so that their own angels will let them know that they are still with them.God

Bless!Love,VelvetAdministrator for Tetrasomy 18p Canadahttp://www.tetrasom y18p.ca/"'s Syndrome"

November 16, 2009

Roxanna – I had been thinking about you and had meant to email you to make sure you were ok since we had not heard from you lately. I am so sorry to hear about your dad. It is never easy to give up a loved one. I will keep you and yours in my thoughts and prayers.

On 11/16/09 8:30 AM, " Roxanna " <MadIdeas@...> wrote: