Guest Blog by Jodi O’Donnell – Ames, founder of the charity Hope Loves Company (HLC).

HLC is the only non-profit organization in the US dedicated to supporting children with a parent or grandparent with ALS. Jodi shared an excerpt from the charity’s upcoming book, “Someone I Love Has ALS, A Family Caregiver’s Guide” edited by Jodi O’Donnell-Ames.

The book will be available next month on Amazon.

(Chapter 9)

Parenting and ALS

By Jodi O’Donnell-Ames

An ALS family is a unique family. Although roles may change, and challenges are many, love and support are the constant thread in holding an ALS family together. Never underestimate a child’s role in that unity. As a certified teacher, I have worked with children for most of my life. I have also raised three children who have lost a parent to ALS and understand how complicated life becomes for everyone in the family when a parent is ill. With that in mind, I have included a few suggestions below that were helpful to me as I learned to balance parenting with caregiving. Be patient with and aware of the organization and teamwork required for this juggling act.

Getting Help

People living with ALS need support. Caregivers need support, and so will other family members, especially children. Be sure to let school teachers and counselors know what your family is facing. Patients and caregivers will have less time to be parents. Be sure to ask trusted family and friends who have children of a similar age to include your child on fun excursions. Allow your child to be a child and enjoy play dates and outings.

Additional Helpers

A trusted relative or friend who does not have children can also be helpful. He or she can provide special bonding time such as a day at the beach or amusement park, and the one-on-one time may provide an opportunity for your child to share feelings about the situation. Encourage the adult to listen to the child, but not to necessarily bring up the family situation on each and every outing. Sometimes your child may just need time to do ordinary things without thinking about what is going on at home. For those family members with children, please invite the children of PALS on fun excursions. When travel became challenging, I sent a letter out to our family and friends and asked if they could include Alina in their plans, especially during the summer months. We wanted our child to have fun, but I was torn between taking care of my husband and taking Alina to the park. Knowing that our child has a fun day out while we were at the doctor’s office eased our minds.

Special Reading Time

Try to find uninterrupted, quiet time to read an ALS children’s book with your child (see Resources) or have him or her read it to you. Be patient and allow enough time for questions, and answer those questions to the best of your ability. Listen closely and you will learn what he or she already knows. Remember that young children often want to hear the same information, or the same story read to them, more than once. Be patient and allow them to choose a favorite or new book that relates to the PALS’ illness as often as they would like. As they grow and learn, they may have new questions, or need more complex answers to the same questions.

When You Can’t Be There

When one parent is ill, the other parent must divide his or her time. When you can’t be there in person, find creative ways to remember your child. Leave notes in hiding spots or in lunch boxes, or buy and wrap a small surprise to place under the pillow. Make a video of family memories that your child can view while you are at the doctors or hospital. These small gestures will guarantee smiles for sure!

Involve Your Child

If a child expresses an interest in caregiving, allow it. Helping is a form of affection and may provide feelings of pride and accomplishment. The reverse is also true. A child may be uninterested in caregiving. Don’t make your child responsible for taking care of a parent in ways he or she is not yet ready for. Allow the parent to be a parent and the child to be a child as much as possible.

Pay Attention

Kids cope and grieve differently. Some children may become withdrawn while others may get angry. Think before you react to your child’s behavior. Was there another change in the PAL’s condition? Did Mom just get a feeding tube? Did another PALS acquaintance lose his battle and your child overhear the news? Remember that although your child may not talk about what’s happening, that doesn’t mean it’s not helpful to do so. There may come a time when counseling support will be helpful. Let your child know that it’s ok to seek and receive professional help.

Love Your Child

Showering your child with love, whether you are the parent with ALS or the caregiving parent, is the most important thing of all. Forming great memories of love and affection are healing for the entire family. Document those memories on camera and video. If you have the energy and strength, write love letters to your child for special occasions down the road. These will certainly be cherished.

Good to KNOW: Author Jodi O’Donnell-Ames and her late husband Kevin wrote cards for each of their daughter Alina’s milestone events. Even though this was very difficult to do emotionally and physically in the midst of ALS (Jodi read Kevin’s lips to write his sentiments), the cards have been priceless gifts for Alina over the years.


About The Charity:

Hope Loves Company (HLC)

HLC is the only non-profit in the U.S. dedicated to the children of Amyotrophic Lateral Sclerosis (ALS) patients. Most funding for ALS goes to research and patient care — and that is important, but what about the children? It is estimated that 85% of ALS patients have children, so those children will witness a parent struggling with terminal illness. HLC is unique in its dedication to supporting the children of ALS patients and relatives.

The mission of Hope Loves Company is to provide emotional and educational support to children and young adults who have family members battling ALS.

Hope Loves Company is a non-profit organization founded in 2007. We are a 501 (c)3 non-profit. Our tax exempt number is 20-8418402.

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UPDATE 6/3/2016: See interview on