Any one had to explain this to little ones?

[shelleynshaggy]

A friend of my daughters came to my mom yesterday and said "Mommy says Mikayla's Daddy is sick" - she asked a few more questions after that. Nothing offensive - but made me realize that I need to talk to Mikayla. She knows that daddy forgets things and his muscles act funny - doesn't realize he is "sick." She knows the walk was to help daddy's doctors make his muscles better. Not sure what I should explain. I may just sit her down and ask her what questions she has. I contacted the school counselor - not much help there - she will send home a list of resources. I want to be proactive but not overactive. I don't want her to hear to much from her friends. The girl who said something is 2 yrs older than Mikayla so she may have more of an understanding.

Thanks.
Rachelle:?:

[Katie C]

Shelley... I think you may be overthinking this one. "Daddy forgets things and he walks funny and we need to help his doctors." She isn't going to process the same as an adult... "What does Suzy mean about Daddy being sick?" "Oh you know sweetie... because he forgets things and has trouble walking like we do" Her response, if you are matter of fact, will most likely be "Oh." And off she'll go. Let her come to you..unless she seems troubled. You know her best. But she doesn't need clinical specifics...

No.. I don't have little ones now. But I did spend 20 years as a primary grade instructional aide/substitute teacher. Been around a fair number of young'ns!

[Blackpool]

My seven year old grandaughter lives with us, as Katie said don,t overthink it I found letting her help me, running the bath, filling my bipap with water,raising the head of the bed,made her feel included in my illness and she had done something to feel good about.

[GlenBrittle]

The best place to get those answers will be the ALS Rehab Centers. They will have counselors experienced with these questions.

Glen

[Pidge]

Shelly I have worked w/ children for 15 years or more my kids that I take care of now, love my son who has been dx w/ ALS they like to wrestle & just goof around. Lately they want to know why he is using a cane, my best advice for you is if your daughter asks a ? answer it honetly on her terms but don't elaborate. Children are very strong just don't over load w/ to much info be honest to the point and then move on do not dwell keep life as normal as possibe for her.
Pidge

[Pidge]

One more thing Shelly don't rely on counselors too much most of them don't know what they are talking about sorry hope I didn't offend anyone just being honest here. You have to walk in the shoes. Just use your MOM instincts.

[shelleynshaggy]

I think you are all right - I am overthinking this. I did talk to Mikayla - she is better. She had a bad day at school today. When the teacher asked her what was wrong she started to cry and said "I asked Daddy to turn the fan on for me last night & he didn't listen." Not sure why that would cause a breakdown. Her teacher talked to her and told her that she could always talk to her about anything. She also told me Ms.S (I believe the school counselor) talked to her and told her she could talk to her. I told her she could talk to any grown-up, and made many suggestions - including her Aunties. Her response - they don't live by us! I told her I would help her call them "Oh ok, good - can we play now?"

She is a tough kid - she will be fine.

[Katie C]

Shelley... y'know how you or I feel when we get "the stare"? Imagine how a little one like Mikayla feels when her beloved daddy does that to her! I'm pretty sure it'd make me cry too. Glad you talked to her... now she feels included. Good job Mom!!!

[K-Town]

My son Is just turning 3. each night since he was 1, we say "Dear God. Bless Daddy, Mommy. Grandma, Papa....ect...A few months ago he said,"Dear God, bless daddy..and please make him better. Amen." Interesting that he came up with it since I'm not sure how he knows who 'God' is. We don't go to church. ( please no preaching, I get enough from my Irish Catholic Mother ;-) and I am the only one who does the 'prayer' with him, so no chance he got it from another.
It made me weep, still does, as he says it every night.
I have to say though, when my husband is in a good mood, my son says Daddy's not sick, he's happy! ( no one has told him he's sick). I think how you are dealing emotionally as parents greatly influences how your children cope with it. In our home anger is not tolerated. If my husband is having a bad day, my son and I take many walks to remove it. Anger = hurt.
I hate this horrible beast of a disease!

[Five]

Hi Shelley

The MND Assoc in Australia has these resources for parents talking to children:

Just been diagnosed - MND Australia (http://www.mndaust.asn.au/just-been-diagnosed/)

I plan to use these to talk with my 9yr old and 12yr old about their grandmother.

All the best to you.

[kelly]

This is a challenging one. I have always answered my kids questions as honestly as possible. Try to give them information as they ask. For example..when my 7 year old asked if Daddy is ever going to get better, I answered that scientists all over the world are working very hard to find answers for his disease. They are trying to find medicine that will help slow the disease down. We have to stay hopeful and enjoy all of our time with Daddy. I focus on the strength that Daddy has fighting this disease.and it is a different kind of strenth then other Daddy's have. Of course the minute I get alone....I cry from the heartbreak that this disease causes. I try to keep things as "normal" as possible for the boys. THey still participate in all school and outside activities. They have playdates over the house all the time. I also realize that the kids only seem stressed...when I am stressed. Have been trying to get some time away (a walk, or coffee) ..so that I can be on for them.

[tajmom]

I was diagnosed a year ago. At the time my kids were 12, 8 and 6. I had had symptoms (foot drop, limp, etc) for 18 months before I was diagnosed so the kids knew something was up. With my 12 year old, we opted to be totally honest because we felt it was important to have that bond of trust with him...and he is intelligent and can google of course. It is difficult for him but I think it helps that he knows he can ask me anything about it. Like adolescence isn't tough enough! The girls we felt wouldn't understand the bigger picture quite as much, but I have told them (and other kids such as the girls in my Brownie troop and other curious children who ask me why I'm in a wheelchair) that I have a disease that makes my muscles weak. I have told my girls that the doctor can't fix it and it will keep getting worse. I think at this point that's all they want to know.

My neurologist (who lost a relative to als and had to talk to his own kids about it) gave me some good advice. He said remember that als is a disease that reveals itself in a very obvious way. As things progress, for example going from a cane to a walker, the kids ask about it and it presents a natural opportunity to talk with them. This way they take in the info gradually and when they are ready for it.

[pepsiman]

Yep, the little one's problems are transitory, they "feel" in a big way but those feelings change by the minute. You have to remember that, to the really young ones, it's all they know so their "normal" is different than your normal. Long drawn out explanations go right over their heads. Just give them what they need "right now", in five minutes their needs will be completely different. Thank you KatieC for that comment about "the stare", it always throws me off guard. I don't think any of the kids have seen it yet, but it's very similar to the "evil eye" my wife used to give me before she was diagnosed, so I always feel like I've screwed something up yet again. I also agree wholeheartedly with Pidge's comment about the counselors, just as in raising kids "you don't really know anything until you've walked in those shoes". Call it instinct, intuition or whatever, you have what you need to know right there within you. Trust yourself, I've got four kids and every one needs something different. Just do what feels right, without thinking about it, and you'll be fine.

Some days you're the dog and some days you're the fire hydrant, today I was the fire hydrant.

Dick