ALS on Dr. Laura radio show

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halfin

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My wife has been listening to the Dr. Laura Schlessinger radio show this afternoon, and I just heard a guy call in who had ALS. It's funny how your attention can be grabbed when you hear something interesting - I was working in the other room and completely ignoring the radio, but when I heard her spelling out ALS I suddenly noticed what she was saying.

The caller was a guy who had been diagnosed recently, and was wondering how much to tell his younger son, who was 14. Dr. Laura basically said that was old enough to know the whole story, which sounds right to me. She suggested too that it is easier for kids to handle news like this if you give them things to do to help out the family. This way they can feel like everything is not out of their control, that they are making a contribution and sharing the burden.

My instinct, similar to the guy on the radio, has been to protect my kids (although they are in their 20s) and try to insulate them from worrying about what will happen. I see people here who react the same way, wanting to give their kids and their family as normal an upbringing as possible. But maybe that is wrong. Maybe it is better to ask them to help, even to make sacrifices. Psychologically it might make it easier to deal with the bad news.
 

GlenBrittle

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Just be careful they don't find out from someone else. Then you are hiding it from them. I suggest bringing it up before someone else does.

Just my .02 .

Glen
 

tajmom

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My son is 13 (12 when I was diagnosed). I told him everything because at this age trust is so important. Also kids at that age are so computer savvy, I preferred that he hear it from me (and be able to ask me questions) rather than from googling it. My daughters are younger (7 and 9) and they are a bit more clueless. They know I am not getting better but I don't think they grasp the big picture yet which I think is appropriate for their ages. The effects of this disease are so obvious, leads to lots of questions and "teachable moments" so the kids can take it all in gradually. It's still so painful; the worst thing about this disease is not what I have to deal with (I can take it!) but that my kids have to live with this. Good luck with whatever you decide Hal; so much of parenting is about following your instincts.
 

BarryG

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Hal, you know your kids better than us, but my wife and I decided that our son, who was 19 and away at university when I was diagnosed, should be the first to know. As Glen said, your kids need to hear it from you not from anyone else.

One of the things about this disease is that in almost all cases we and our families have time to come to terms (as best we can) with our lives. So don't take that time away from your kids and try to make good memories with them while you can.
 

halfin

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I should make clear, we did tell the kids I have ALS. I just haven't really sat down with them and talked about what it will all mean, how all our lives will change due to my illness. Part of the problem is I haven't seen my daughter since my diagnosis, she lives in Denver. We'll see her next week when the whole family is together and we will have a heart to heart talk then.
 

Katie C

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Hal... if they're in their 20's... they know. They've looked it up by now. So I'm willing to be you'll have a head start on that heart to heart, because they'll have the basics down already and you can talk about what's specific to your family. I must say my 24 year old and his girlfriend (almost 20) have really stepped up as far as helping without being asked, and just being supportive. It's pretty cool.
 

kelly

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My kiddos are 6 and 8 they know that their Daddy has ALS. I will continue to keep things as "normal" as they can be in this totally not normal situation. I believe in dialogue as needed. I do not believe that they need to know he has a feeding tube..unless they discover it. Damn...I want them to maintain as much innocense as possible. They have already lost so much with his illness. But on the other hand...he is still the strongest man..bravest man....and most intelligent man they have ever known. Yes, things are different..but it is all they know. I am on a role tonight.
 

indigosd

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Hal, isn't so interesting how before the ALS diagnosed we never heard anything about ALS and now we hear, read and see it everywhere! I have been an RN and practiced all over the USA in many diverse settings. In my 25+ years of Nursing, I NEVER had a pt with ALS! It is like the Red car-you buy a red car because you never see one and once you have it, you SEE RED CARS EVERYWHERE!
About disclosing the diagnosed of ALS... I think that the as Parents in the Western World our first impulse is to shield and protect our children from anything that we see as unpleasant in life. That was our first thought with our then 12 year old son. He was already very aware that something was very wrong with his Dad. We thought that we could just tell him that it was ALS without anything specific and then gradually answer his questions over time and also shield ourselves from the pain in the process. WRONG! As part of their Science Curriculium in the 6th grade they had spent a ton of time studying "Lou Gehrig's Disease" and he knew IMMEDIATELY what we had told him...it was hands down the most heart breaking and also the most defining moment in our lives as a Family. We not only survived it but we were enlarged. Honestly, there was a second when I thought that I couldn't survive his anquish and his begging his Daddy to not die and leave him...We no longer make any attempt to shield him. How can you when he lives with it every day? Due to his age, his big concern is "what is going to happen to me" and that makes sense. That is where he is suppose to be as a now 13 year old. We have found for our child that we have to answer his questions with honesty and encourage his belief in the incredible knowledge that life is good ALWAYS. We spent time with him and let him know that he would be taken care of, who his legal guardians are if we were not able to be with him, strengthed his support network with Family, Church and School and most importantly for our child, we give him tools and information that will empower him. For example, he was terrified with his Dad's choking so I taught him WHEN and HOW to perform the Heimlick Manuever. We took him to our first Team Care appt and he asked incredible questions and knows that he is a very important part of our TEAM! For us as a Family, we are just being redefined. We have had incredible opportunities to share our thoughts/philosophy and explore anger, grief, GOD, joy, what is important to us-living in the now and how the only thing that we have control over is our attitude. It is such a journey this life that we have been given. Since he was old enough to talk he has always said that he wanted to be a Neurologist and specifically, a Neuro Surgeon. Last year, he researched which college he thought would give him the best education for that profession and decided that Duke University was it. Coincidence or just God showing us that he does have a plan for each and every one of us! Maybe, just maybe this experience that we are having as a Family will give our son the tools to make certain that no more children will need to face this particular journey in their lives. The one thing that we always hold fast to is hope and the heartfelt belief that there is always something good from even the most horrific experience. I soul wish that we had been spared this experience...:( And yet, I am also committed to seeing the gifts that it has and will bestow on us.
 

DebbieR

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Indigosd

WOW - Well said! Thank you
 

BarryG

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indigosd, thank you for your post this morning. You have just made my EL kick in and now my face is all wet but that is ok because so much of what you have said hits home with me. My son is older than yours (now 21) but being a parent doesn't end when your kids reach a certain age, they still need help and guidance even when they are on their own (even if they don't think so).

Sometimes I think that as parents we underestimate our kids because we still can remember them as babies and we forget about all of the things that we have taught them and all of the information that they now have available.

Thanks again
Barry

PS here is a funny my twisted sister (mother of three grown boys) sent me).
 

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indigosd

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Barry, I could apologize for making your EL kickin but instead, I will say that I wish I was sitting next to you and could just wipe your face and hold the kleenix so you could blow your nose! I love the Parenting photo! Oh goodness-I am in desparate need of the PZ anti-snorting elixir! Gee, just picture the 2 of us, you crying and me snorting! I thank God every day for this fabulous forum that is filled with such incredible REAL human becomings! To use your tag, "Remember, I'm pulling for you, we're all in this together." hugs, Kay Marie
 

hopingforcure

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You guys are such special people. I am constantly reminded of the goodness of this forum, and the members on it. I love the posts on this thread. My son is 14 going on
40 mentally, he has had to grow up in so many ways so quickly, but because of my illness he has been able to stay young in so many ways. He spends a lot of time with my husband and I, and sometimes I think if I were healthy he would spend more time with friends, for this I am grateful.
 

halfin

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Indigo, that was such a moving story, I was just like Barry, crying when I read it. I'll blame EL too... :)
 

indigosd

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awww...thank you forum family:smile:
 
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