Have you been able to explain things?
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When a person they love has ALS, it can be confusing for children. Some resources that may be helpful are “Grandpa, What is ALS?” http://www.alsab.ca/kids/book/index.shtml , “A booklet for young people” http://www.alsindependence.com/A%20BOOKLET%20FOR%20YOUNG%20PEOPLE.pdf , and the ALS activity book for kids (near the bottom of the screen)
https://secure2.convio.net/alsa/site/SPageServer?pagename=STL_Familymanuals &JServSessionIdr004=85ue8qck01.app24b.
You can also look at The ALS Society of Canada’s website, as they have booklets for kids http://www.als.ca/als411/ .
The Dougy Center http://www.dougy.org/, and Rainbows http://www.rainbows.org/ may have resources that may be of help.
In addition, perhaps the local Florida Chapter 888-257-1717 may be able to provide you with guidance or direction with this very difficult and daunting task.
I hope this is helpful.
Amber
I have a four year old son and six year old daughter. I was diagnosed in September. I tell them what is happening to my muscles and what I will need help doing in the future and how they can help me.
I repeatedly assure them that they will not get ALS as I know they worry about that.
I tell them that people with ALS dont live as long as others but that I will live for a long time.
That seems to be enough for them for now.
Contact your local ALS Center. Most of them have books for children. ALS Center in CT, gave my daughter a backpack containing a story for the children to read, a journal if they wanted to write their thoughts about ALS down or anything else plus a cute teddy bear.
I also found the best way we have dealt with this disease with our grand children is to be as honest as possible when they do ask questions.
Hope this helps.
The only thing I would recommend that you change when talking to your children is the part about your living for a long time. I hope and pray that will be the case for you, but the fact of the matter is that for a lot of ALS patients the prognosis is approximately 24 months from the time of diagnosis. My husband passed away 23 months after he was diagnosed, and we had 6 yr old and a 10 yr old. We we honest with them, just have you have been, and we have them in grief therapy now, but we never made any predictions on how long their dad would survive with ALS, because that's just not possible.
Everyone is different, but the will to live means alot in this disease. Keep up the hope. My brother was told he would live one year he live 12 years. He decided he could not do it any longer. He would still be here today if he wanted to.
Keep praying, smi,ing and spend as much time with your children as you can.
Marcy Smith
Fort Collins Co
Hi Jody,
I'm sorry for your loss & I understand your thoughts on being honest with your children. I figure I have had a relatively slow progression so far.. Doctors first mentioned ALS as a possibility in January 07, diagnosed in September 07- still walking some, little atrophy & no bulbar symptoms. I am also pretty sure that I will go on a vent when the time comes. "A long time" is relative when you're 6 and 4 I figure. I would rather ease them into the idea of dad not being around when they can understand a little more and as things evolve for me.
The other thing I try to do is to share with them the ways I'm going to need to adapt in a fun/humorous way. The kids know I can't stand to eat chicken, for example. I've explained to them that when my muscles get weak in my tongue and mouth I won't be able to eat, so I'll get a tube that goes directly into my stomach and they'll need to help prepare food for my feeding tube. I asked my four year old, "now you're not going to put chicken in my feeding tube are you?" and he laughed his head off. I made my six year old promise to put beer and coffee in my feeding tube.
These sorts of discussions seem to help prepare them and make things a little less scary.
At the same time, I am trying to prepare them to meet other people various stages of the disease, which they will soon. At that point I expect they will have more questions/fears/etc. that I will need to address.
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