Children in ALS families

Laurie B. Fieldman, LCSW Director of Social Services, Les Turner ALS Foundation

The Les Turner ALS Foundation www.lesturnerals.org

We would do anything to protect our kids.

They can’t be protected from some things.

Kids know the truth.

They need to know they can still trust the adults they love.

It will take all of your strength and courage.

Tell the age-appropriate truth.

We all dread the big question.

Open the door to conversation.

The child will come in when s/he is ready…but not before.

It’s okay for kids to see a sad grown-up.

You should explain your tears and bring your child near.

Frustration is the hallmark symptom of ALS.

It’s important to label emotions.

Kids follow the lead of the grown-ups.

There is never too much support.

You can help by talking to their teachers.

Normalcy…

…is worth its weight in gold

How can they have normalcy??

Let them be kids.

It’s okay to have fun even though your loved one has ALS.

They need their friends.

Remember that they need grown-ups, too.

Children need so much reassurance.

They need to know who will make their lunch.

They need to know that the ALS is not their fault.

Kids don’t know the parent you thought you’d be.

You can find new ways to show your love.

It’s not easy, but follow your heart.

The kids just want your presence.

They see you with their heart.

You are still Superman to them…

…or Superwoman, of course!

Kids will experience many emotions because they feel their family is different.

Kids handle emotions differently.

Their attitude will mirror yours.

Keep the lines of communication open.

Objective 1: Be able to explain three developmental stages of children.

Ages 5 and under

Ages 7 to 10

Tweens and teens

Objective 2: Three things to tell parents to help them guide their kids:

Lead with your heart.

Speak the truth.

Teach families how to keep things as “normal” as possible.

Objective 3: Be able to help the parents identify four warning signs that indicate professional help is needed.

Changes in appetite or sleeping Grades dropping No longer enjoys the usual activities Too quiet or too angry

We need a break, just as the kids do.

This is the author’s personal favorite!

We have to be there for each other.

It takes a team.

Thank you to the Les Turner ALS Foundation and thank you for your attention today!