What do you tell the children?

[Cate]

We have 2 children . 10 and 13.............their dad just diagnosed with ALS ,contained in mouth as of right now. What do you tell the children? The truth, a lighter version of the truth or as a need to know basis.?...........Please, please I need your guidance..........Blessings, Cate

 

[indigosd]

Oh Cate, I soul feel your grief...our son just turned 13. Web was diagnosed with Bulbar onset in July 09. Our son already knew that Dad was sick. I thought that I could buy some time by telling him simply that Dad has ALS and we could ease into it just a little. I completely forgot that they had studied ALS/Lou Gehrig's Disease in their 6th grade Science module. I will not kid you, it was heart breaking because he knew immediately that there is no cure. It was the hardest thing we have ever lived through up to this point-his absolute agony and sobbing to his Dad to not leave him...we spent that entire day in bed-the three of us, just holding one another and sobbing. Honestly, I am grateful. It allowed us to really grieve the initial shock and hold one another and move into the next part of the journey. I believe that it is impossible to sugar coat this or to shield them when they are living it day to day. It is soul difficult. There are no right ways. You will find the best way for your family. The Canada ALSA has some really good literature for children of PALS. I was hoping that I could give information on a as needed basis but it didn't work out that way for our family. The one thing that I can promise you is that you will survive this even if you don't think that you can. Focus them on the moments-ie Dad can still walk, He can still go to your school functions and try to turn them away from all the what if's and the future that we do not know and can not control. We told our Ministers and the School immediately so that he would have all the support possible and that has seemed to help. Not that he talks about it with them but they keep an eye out for him. Sending you a heart full of courage and hugs, Kay Marie

 

[irismarie]

So so sad you have this horrible situation. Kay Marie sort of fell into their particular situation and making your choice is going to be different. I think whatever happens between you as a family, there is always a danger they will learn the hard truth outside the home and that would be even worse. Still, to throw the whole lot at them in one go is ENORMOUS, isn't it! Perhaps a little at a time - but over not too long a time. Oh dear, how hard it is! I think you can only ever play these things in watching for the moment, waiting for a cue and doing the best you can at the given moment. Kay Marie's experience is an important help and her advice is based on the same experience so has to be invaluable, particularly the thought to tell other adults involved in their lives.
The best of luck and bon courage.

 

[brooksea]

I will add this- It depends on the maturity of your 10 year old as to how and what to tell. Our son is 9 and his dad was diagnosed when he was 6. So, we have given him info a bit at a time and he has asked his own questions and we have given him honest answers. The 13 year old will be an entirely different matter, as Kay Marie has spoken about.

I would caution about painting a picture like the neuro's do: "3-5 years." I told my son that only God knows when each of us are going to die and we have to hope all the research doctors will find a "medicine" to treat ALS.

It has been a difficult road and I would agree that it is a must to get the school administration/counselor involved and anyone else that they look up to that could be of help in their time of need. My son doesn't talk much about his daddy's illness anymore to me, but he does talk about it at school.

I just bought a book called What to Do When You're Scared & Worried by James J Crist, PhD. While it doesn't have anything to do with ALS, it does have some excellent tips for kids to help deal with what is bothering them, such as keeping a journal and making a list of worries, etc... Our son has started a journal and I believe it has been helpful for him to write down his feelings.

There is also a workbook written by a counselor, but I haven't wanted to fork over the money for it. It may be a helpful tool for your kids-

"request a copy of Our ALS Family Playbook by contacting its author, Sharon Rugg, LCSW, at [email protected] or (770) 928-1027." From the ALS Assoc of GA. Welcome - The ALS Association

Cate, I'm very sorry you even have to ask this question! But, we DO so understand what you are going through! Good luck to you and your family. Hang in there! We are here if you need to talk!

 

[BarryG]

Cate, so sorry that you have to be going through this, it is so hard for us adults to come to grips with and even harder for kids. Here is a link to the ALS Canada website that Kay Marie mentioned. I hope it can help you.

http://www.als411.ca/

Barry

 

[wanda brittle]

from what I have experienced is a need to know basis because they will never understand it all. they are to young. my grandson is way to young so we tell him things when he ask.

 

[tajmom]

Cate, so sorry to hear this. My children were 12, 8 and 6 when I was diagnosed. My 12 year old, I told everything, omitting timelines as brooksea mentioned, but being honest about the disease and the fact that it didn't have a cure YET. I felt at this age trust is so important and I didn't want him to feel that I was not being truthful with him. At this age too they can google, so best to hear it from someone they love and trust -- and that they not feel like they are the last to know. I've found that he asks questions when he is ready. It's been tough for him and me. Adolescents have enough to worry about without this.

My girls were just told initially that my leg would not get better and that I would get worse. The thing about this disease is that it unfolds right in front of them. Each transition in the disease (getting a wheelchair or other new equipment, home renovations, new symptoms, etc.) presents an opportunity to talk with them and for them to ask questions. I think depending on your 10 year old's maturity and the relationship between the siblings (e.g., will the older one share with the younger anyway?) your 10 year old could be ready for the whole story, or not. Like everything else in parenting, trust your instincts.

It is so hard and so sad. But I find my kids are wonderful helpers and the greatest source of joy in the world. I can't be the same kind of parent I used to be, but I try to make sure they know that the important things, like how much we love them, will never change. Good luck, and welcome to the forum; I hope it will be a good source of support for you.

Jennifer

 

[GlenBrittle]

Go see Nana

 

[cris]

cate..When my hubby was DX, our kids were 9,8 &6. We were pretty honest w/ the 9 yr old. He asked and we answered. As with Brooksea we did not give timelines. We just gave a brief overview. Gave him enough so that he undrstood. He has been a God-send. The 1st yr was rough, but he has rallied very well. Our other 2 know dad is sick, but neither one really understands. The middle one has CP and just thinks this is how dad is. The youngest has started asking questions...we have tried to be honest with out painting the worst in bloody detail. I think you know your kids the best and you will know what and how much info to impart. If they have internet access it could get a little tricky if you don't give them the basics.

Will pray for guidance for you..Hugs....c

 

[DgtofTNfan]

Cate, I am so sorry about your husbands diagnosis. The parents here have provided some solid advice.

I have a handout that the social worker from the ALS clinic provided to us as a start. I scanned it to my computer and emailed it to my sibs and would be glad to email it to you. I don't think you can send me a message with your email address until you have a few more posts though. If you would like a copy, I will figure out how to get it to you.

Welcome to the forum.

 

[Cate]

To all of you ~ I am blessed and honored that you have taken the time to let me know your thoughts. Your words have taught me a great deal about strength and hope. I will continue to pray for guidance and wisdom to do the best for my children. Getting those first words out , I know will be painful, but have to be said . I thank you for including my family in your prayers..........Blessings, Cate

 

[Cate]

CJ ~ thanks for the information on the books you suggested . I just finished ordering both . I will let you know about the ALS family Playbook when I receive it ...................thanks again, Cate

 

[paleshia]

hi cate, we told our girls (17 and 14) everything but even with them we don't talk much about timelines....my oldest did a speech on als at school after i was diagnosed...very brave of her i think.....for a little while all my 6 year old knew was i had a bad hand.....then we told him what i had knowing he was aware of lou gehrig...big yankee fans in this house. then when he told me i didn't take care of my hand and that's why it didn't work....we told him a little more about how the disease works. so a little at a time i suppose. he knows lou gehrig died and he has said some things like i won't have lou gehrig's disease in heaven, but he really doesn't know a time-frame like others have said.

you will know what to do.....you just love them and tell them that often and that loving them is the one thing that will never change....

and i so wish none of had to do this with our kids

 

[BrianD]

My turn to chime in. Told my boys, ages 9 and 12 a few weeks ago.
I agree with lots of the above opinions... and we also stressed the "God's time line" perspective. We didn't share the specific 3-5 years information with them at first.

Then since more people in lives were knowing, it was time to tell them that specific 3-5 statistic a couple days ago, since we didn't want them to hear second hand in sunday school, etc.

My 12 year old was actually relieved. Here he had been thinking maybe 1 year, and his next birthday would be the last one with me! Ugh... talk about taking the wind out of your sails! We wish we would have discussed that one much earlier.

So just wanted to offer that perspective on sharing the time line closer to "up front". Of course each family situation is unique.

Be open and honest... do not lie to them ever.
Let them know they can ask any question, at any time. That is a way they can tell you they are ready for more information.

Brian

 

[brooksea]

Brian,

Hopefully you will outlive that statistic!:-D