My brother is dying | Autism PDD

I am sooo sorry for your family,having lost my oldest son , I know what your parents are going through,It seems so unfair for a child to die before there parents

Take care of yourself,God bless you and your Family,Linda

Kristy, this is such horrible news. I remember you talking about your brother in many other topics, and I know he will be sorely missed by you and the rest of his family. You have my utmost sympathy.

My children haven't yet faced the loss of someone they were close to, so I don't have any direct experience to share. I wanted to help as best I could, so I found some advice on Carol Gray's website.

Carol sited Tony Attwood, who says that autistic children may seem less or more upset than other family members, so it's best to follow their lead rather than prepare them for a reaction they might not have.

Carol also advocates creating a memory box with photos, thoughts, videos, etc. of the child's experiences with his loved one. She also suggests using visuals to make the child's feelings and questions more tangible. For example, writing down the child's thoughts in a "comic strip conversation" and adding that to the memory box.

(Source: http://www.thegraycenter.org/askexpertsresults.cfm?id=12)

If things go really difficult, you might consider buying "Gray's Guide to Loss, Learning and Children with ASD." It's probably one of very few resources on death and dying out there for parents of autistic children. The guide also talks about other losses in life.

I'll be thinking of you and your family during this time of grief.

I'm so sorry to here about your brother. I will keep your family in my prayers. ((((Hugs)))) Kristy...I am sooo sorry you and your family. My prayers are with you and your family during this difficult time.

I wish I had some pearls of wisdom, but...I don't and won't pretend to have any.

All the best in this time.

Oh, I am SO sorry. I have a friend whose 4th son died of crib death when her older 3 (all ASD) were still in preschool. She said that there are excellent books in the library about explaining death to children. Since books are visual, they might help. I can't express how sorry I am for you and your family. YOu will be in my prayers.

Kristy

My advice is be honest, but do not go into too much detail.

There is a fantastic movie called "Nicholas' Gift" which is about a young boy whose family made the decision to donate his organs after he was injured whilst on holiday - it's based on a true story, very sad, but my kids wanted to be organ donors after watching the film. My own Nicholas was about 6 when this film came out and he was able to understand it ok.

My thoughts and prayers are with you and your family.

Mysh

Kristy,

I'm so sorry.

We did recently have to tell my son about his grandmother passing away - he's six, too. I'll see if I can get the exact gist of what was said by his mother, but basically, she just told him about heaven and angels and such, and that Nanny would always be watching over him- that sort of thing. Trite, but he handled it as well as can be expected.

At six, I'm not sure the concept is really something that they can get their head around. Just telling a simple, comforting story might be best.

I wish I knew how to help more. You and your family is in my thoughts.

Kristy ... my heart breaks for you. I'm so sorry. My thoughts are with you.

(((Kristy))),

I just wanted to say that you and your family are in my thoughts and prayers. I'm so sorry.

Patty

I am so sorry, and my family will say a prayer for you. When Adam was about 6 both his grandmas passed away within a short time. We bought a book that Maria Shriver wrote about heaven. It was a wonderfull book and has beautifull pictures. It helped alot. But is was very hard for me to even get through with him.

As Norway Mom wrote, some kids don't react as you would think. Adam was very nonchalant about the whole thing and never cried. But I know he understood.

My heart grieves for all of you. I'm so sorry.You have my deepest sympathy.

I am so sorry you are going through this and will send prayers your way.

I just wanted to comment that I think it would depend on your child if you wanted to bring him to the hospital or not. With some of our kids, they could start to obsess about it - seeing makes it more real. There are good and bad points about that - and you need to decide if that would be okay for your son. Which, I'm sure, is not an easy decision at this time. I'm sorry not to be of more help - but I thought I would point out that some of our kids might start obsessing about hospitals/illness/death. I think mine would. He has been to hospitals before as both grandmas have had several surgeries. I wouldn't want him thinking that if someone is in the hospital they will die.

Anyway, again - my heart goes out to you and to your family.

Your family is in our prayers, I am so sorry.

My thoughts are with you all xx.

So so sorry to hear about your brother. Your family will be in my thoughts and prayers. I will light a candle tonight for him.

Lisa

keeping you and your family in my thoughts at this very difficult time. Kristy - my thoughts are with you and your family in this very difficult time.Kristy, all I can say is, you and your family are in our prayers, and I will pray that you will find the right words to say. So sorry you have to go through this.

You and your family are in my thoughts and prayers.

here is what a friend of mine did when her grandmother passed away when she had to explain to her then 5 and 3 yr old (whom they were extremely close to great nanna):

CJ, Daner, I need to talk to you about great nanna.

Ok mom

Great Nanna got a message from God the other day. He told her he was having a really hard time of it right now. There are so many people praying and asking me for help, I'm just getting a little backed up. I want so much to be able to help everyone. Great Nanna I want to know if you think you can help me? I need help every night putting out some of the stars. Do you think you could come up here and sit by my side and help me do that?

So the boys seemed to understand that Great Nanna wasn't on earth anymore. Infact, when they are outside on a clear night, they shout "Mommy, I bet Great Nanna put that one out, its really bright. She put that one out for me!"

I sure hope this helps, I can't imagine what you're going through and how you feel.

Reesa

I'm very sorry to hear this. I have lost two siblings myself, one of them a week after my son was born. It's been nearly 11 years since one has been gone and nearly 7 years for the other. I still think about them both a lot. God bless you and your family as you are going through this.

My children haven't really dealt with death yet, but I know that with them, I will need to focus on where the deceased is now as opposed to focusing so much on the fact that they are gone. If you know what I mean. It's the finality part that is troubling for anyone, let alone children.

I'm so sorry...I recently lost my dad and it was not easy telling my son...and he's 11. I will keep you and your family in my prayers.

I am so sorry Kristy. My prayers with the family.

Hugs

Rita

I am so sorry for what has hapened! My brothers best friend just passed at 41 yrs from a heart attack- too too too young...I think GOD is sleeping up there!...Im sorry..and my prayers and thoughts are with u and ur family at this most horrible time. Kristy

I don't really know what to say, except that I am so very sorry and that I understand, I have lost a brother suddenly also. ((((HUGS)))) to you and your family, I will be thinking of you.
I am so sorry. I lost my sister at age 27 to an aneurism. You never get
over it but over time you learn to live with it.
How to prepare your kids? Part is that their uncle will be gone and part of
it is that they will feel all the sadness in the family. Since young kids are
so naturally egocentric I'll say make sure that they know this has nothing
to do with them and is not their fault.
My thoughts are with you.

My six year old son recently lost a classmate of his. I was SHOCKED at how well he handled it. He came home with a letter and I read it and began crying and Corbin looked straight at me and said it's ok mom you don't have to cry he is in heaven with God now. It was a non issue to him. He understood quite well that the little boy was gone and he wouldn't see him again but it was ok because he had decided on his own that it was ok. Kids really amaze me.

I am horribly sorry about your brother. You will be in my prayers.

Becky

(((((Kristy))))).... I am so sorry for you and your entire family. God Bless all of you during this very sad time. I will keep you in my prayers.

nakama
I'm sorry to hear about your brother, I'll be thinking about you and your family

OMG

How much pain is there in the world!

Sending you and your family lots of prayers and positive thoughts to get you through this horrible time

I am so sorry -- thinking of you and your family.

Hi Kristy,

My most sincere sympathies to you and your family at this very difficult time. I lost a sister 7 years ago at age 40 and my niece aged 26 nearly 3 years ago. Neither of their passing’s was a complete shock as this. We had time to prepare for the inevitable though it was still devastating when they died.

My 6 year old son went to my niece’s funeral; he was 3 years old then and didn’t even think he would understand. However of late he’s been harping on about our deceased relatives and he is not able to understand what death his. He keeps telling my family that our relatives must not cry because this and that person is still alive. He tells us to take them out of the hole and open their eyes. I posted a topic on this a couple of weeks ago. I chose for my kids to be aware of life and death even if they didn’t understand at the time. I wanted to be truthful and honest. It may have backfired but I think that eventually, my son especially will understand.

If it were my sister/brother, I would take my children to the hospital and explain that Uncle/Aunt is very sick and that soon he/she will go to heaven. I would let them see me saying goodbye even if I am crying and give them the opportunity to do the same. I would tell them that Uncle/Aunt was very special and needed to rest forever. I don’t know your religious faith but I would tell them that God wants Uncle/Aunty back now as we are all his children. I would also say that sometimes he takes his children when they are old, sometimes young and that he does not like to see his children suffer. As for your children attending a viewing etc; it is very difficult for children to see a person in a casket. It was my judgment to allow them to go to 2 funerals last year for an uncle and an aunt and I think this is what prompted my son’s preoccupation with our deceased relatives. I still answer him as truthfully as I can. He does not seem to be upset or distressed when he is taking about it.

What you say and how you chose to tell your children is very personal. I personally didn’t want my children growing up as I did with everything sugar coated. Death is sad and profound.

I hope your brother finds eternal peace.

Hang in there….

Sharon (Pembroke Pines, FL)

I am so sorry about this, Kristy. He sounds like a very special man, and I'm sure this must be devastating to you and your parents. Words fail, but I will keep you all in my prayers. Please take care!

shannon

So sorry to hear this. My sincere condolences. I don't have any
ideas about how to explain it to your kids. We lost my mother
in law just as my son was turning 3, and he didn't understand
it then, but we have told him now that his grandma died, and he
keeps asking from time to time if grandma is still dead, or if she
is coming.

Hugs to you.

I am so sorry Kristy. I will keep you and your family in my prayers. I wish I had some advice for you because you always share great advice with us, but I don't. I have lost many people in life, but none close to my children. I think that making a tangible memory box sounds like a good idea.

Kristy,

I am so sad to read about what your family is going through right now. I will be thinking of you, and I will keep you and your family in my prayers.

I am so sorry to hear this. What a terrible shock for you and your family.
I can't imagine losing a brother or a child. I send love and support to you
and yours during this time.

As far as telling the kids, always remember: less is more. You can give
truthful and simple explanations and answer any questions in the same
way. Explain to them about your sad feelings, and let them know you are
okay with it. Sometimes seeing adults so sad can be very disorienting for
the kids. They may worry that you will die too, or they will, so it is
important to make them feel safe and sound. Find ways for them to share
happy memories of their uncle, if you can. Let them take the lead.

I believe greiving as a family is much healthier for everyone, and serves as
a better model for dealing with emotions for our children.
You are all in my thoughts.

I'm so sorry to hear this terrible news Kristy. You and your family are in my prayers.

My eldest lost her father suddenly at the age of 3. Even then, she understood that something unchangeable had happened. It was shortly after that we went to view the movie "The Lion King", and that helped her to understand a bit more about what had happened... it was a good tool to use when talking about death. I also found a wonderful book "The Fall of Freddie the Leaf" by Leo Buscaglia that I used to talk with her about it - and have used again as she got older and had more questions. She has grieved in cycles as she has matured - and when that happens, we revisit the subject again.

Two years ago, we lost my former mother-in-law (and children's grandparent) to a house fire. And again, this past Christmas, we lost my "grandmother" (my aunt who was the matriarch of the family). And, of course, living in the country and being animal lovers, there's been the need to cope with the decision of helping an animal over the Rainbow Bridge as they've aged or been injured, as well as the loss of the small ones in various ways. Being different ages, all of the children have needed understanding and different levels of explanation.

I've learned through these experiences that the children will guide you in what they can handle - let them ask the questions, and then answer just that... no need to volunteer more than an answer to exactly what they asked. As they mature, they ask more in-depth questions, and then answers can be geared accordingly. I also found that because I've been accepting and open to answering their questions and about the appropriateness of their feelings of confusion and grief, as they've aged, the "olders" also provide comfort and answers to their youngers in their own "between-sibs" conversations and play.

Kristy, my thoughts and prayers are with you, not only as you grieve the loss of your brother, but as you try to be strong and parent your children in a manner that allows them to understand what is happening. It is difficult to weather times like this, moreso when you have so many roles - that of sister, daughter, mother. God keep you and yours in the palm of His hand at this difficult time.

Oh I have no advice, but I am so sorry your family is going through this and I will keep you and yours in my prayers.

Oh my... I am so sorry for you and your family. I have no advice, as I've never been through such an experience. I can't even imagine. I only have thoughts and prayers for you during this difficult time.

Dooder's Ma

My 37 year old brother suffered a cerebral embolism today, and it is not survivable. He is being kept alive by a ventilator as he is a registered organ donor. We go back to the hospital tomorrow morning to say goodbye. This is a horrible shock, and watching my parents grieve is the most heartwretching thing I have ever seen. My brother has lived with my parents for the past 10 years and they all help take care of each other. My brother was hyperlexic, has senory issues and is most likely an aspie, though that diagnosis wasn't available back in the 70's. My parents were fighting for services when no one had any clue what to do with my brother. Growing up years and school were very rough, but he turned out ok, was holding a job, had made close friends and was well loved by all. He was one of the success stories that we all hope for.

All my kids know right now is that Uncle Jim is in the hospital and is very, very sick. My NT son asked if Uncle Jim was going to die and dh said we didn't know. Tomorrow we will have to tell them. Has anyone else had to explain something like this to 6 year olds? My parents and brother live 4 miles away and the kids see their uncle often. My brother wants to be creamated and we'll have a memorial service. I just don't know how much detail to go into with the kids and I'm not sure whether C will really understand this. Any advice greatly appreciated.

(((((((((Oh Kristy))))))))) that is so very sad. I'm so sorry. God bless you and you family during this difficult time.

I've never had to help my children understand the loss of somebody so close at age 6. At that age they attended a memorial at school for a teacher they didn't know well. It was an emotional gathering. It was confusing for them and they didn't understand their own strong feelings. The strong feelings of the teachers was difficult for them. Had I know what was going to happen I would have taken them from the ceremony a bit earlier, letting them listen to only a bit of it. Perhaps a good friend can sit with you and the children during the service and the friend can give the children frequent breaks so they don't feel overwhelmed.

My prayers are with you

I am so so sorry. I can't even imagine losing a sibling. Just when I was sitting here feeling sorry for myself. I'm just not sure how much a 6 year old mind can grasp about death. Is there a school counselor that you like, that might have some experience with death issues and kids. I will be thinking good thoughts for you and your family. I can't help with what you are asking, except to suggest as the above poster did about a school counselor...they may be able to help. Definitely want to tell their teachers...so they will understand if they are upset or distracted at school.

I am sending my sincerest sympathys to you and your family. I am very sorry. My sympathies to you and your family. ((hug))I am so sorry. My thoughts and prayers are with you and your family.

When Quinn was 5 1/2 we lost my grandmother then last summer my grandfather. We saw them all the time because they lived on our street. When my grandmother passed away I told him that God needed her and that she will always be watching over us. Then when my grandfather passed away. I told him that they are up in heaven watching over us together.You are in our prayers. I'm so sorry to hear that.
Nowwhat
Oh Kristy, I'm so sorry...

Sending prayers and strength vibes for you and your family...

(((((Hugs)))))

My deepest and sincere sympathy to you and your entire family during this very difficult time...

I think that the ideas of using the book, "The Fall Of Freddy The Leaf" and the movie, "The Lion King" are good ones.

I'm not certain that going to the hospital or to a funeral are good ideas. However, if a memorial service that is truly a celebration of life is held, I think that is a wonderful way to say goodbye and have your children talk about your brother to family and friends.

When my father died, Andrew was about 2. We had a reception after the memorial service and brought all of the family photo albums, and my sister made 2 large posters with all of the names my father was known by and tons of pictures...Daddy, Poppy, Teacher, Mentor, Uncle, Husband, Director, etc.

I know my son may have been "too young" to understand, but his first 3 word phrase was, "Bye-bye Poppy!", clear as a bell (!), and that occurred about 6 weeks before Dad died. Andrew never saw him again as we live 6 hours away...But somehow after dad died, Andrew would talk to him at night or during prayers, so I believe that on some level he knows and understands that it's okay.

Blessings...

Kristy:

We are so sorry to hear of your loss. When my Father-in-Law passed away last year, we told Tyler that, "Pap Pap is in Heaven, with God and the Angels.".
It helped Ty and Us.

With my Father-in-Law's cancer there was no way for him to donate.

Try to think of the families that will get there loved one back because of your Brother's altruistic generosity.
They love him as you do.

We wish you Peace. John

I'm so sorry. I lost my oldest brother 7 years ago in a vehicle accident. I still miss him. My kids handeled it much better than I did. Same when I lost my mother.

You are all in my prayers.