survival float

Survival skills for parents of children with disabilities

by PAULA HOLDEMAN

Family, faith, friends and fraternities key to survival

Remember the joy you felt when the doctor announced that you were going to have a baby? Oh, the dreams and desires you had for your unborn child!

You wished for him to be perfect in every way. You imagined greatness. You imagined how everyone would cherish him.

Then in an instant, your nine months of hopes and dreams were shattered.

The doctor sympathetically approached your bedside after initial examination of your baby and revealed that there is something wrong. After that, everything was a blur.

Paula Holdeman

Paula Holdeman

Then reality sank in slowly. You thought to yourself:

“Please just leave me alone and let me grieve for the loss of my hopes and dreams.”

“I can’t handle this alone, but I don’t want your sympathy. Perhaps, in a few days, your support.”

“And please don’t tell me I must be strong. I don’t want to be strong – not yet anyway.”

“Doesn’t anybody understand?!”

Sound familiar?

Just 11 years ago, these were my thoughts and feelings after the birth of our fourth child, our first son, Michael.

Because our three daughters were also born with numerous disabilities, we were hoping for an uncomplicated child with relatively few health problems – WRONG!

Michael was diagnosed as a person with developmental disabilities. His health problems have been the most challenging out of our four children. The past 11 years has not been easy, no matter what others see or say.

However, through trial and error, I have learned to cope, survive and sometimes even persevere. Fortunately, I have learned some survival skills that I would like to share.

Click here to read part two.

Determining priorities is the number one survival skill on my list.

I call them the “Fs” – family, faith, friends and fraternities. With the support of my husband of 25 years, I have made a commitment to prioritize my energy, time and ability.

Family

My family is always top priority when it comes my hectic schedule. When asked to do something, I almost always respond with “I will have to run this by my family first,” or “Yes, I can do that, but if it interferes with my family, I will have to stop.”

As a parent of four children with disabilities, I strive to see each child as an individual and focus on their abilities. I encourage them to excel in whatever they do, but I have the wisdom to retreat when things become too difficult.

Faith

Everything that I go through and have learned is for a purpose. I believe my faith has sustained me through tremendous trails, and I credit God for daily strength and wisdom.

When asked how one manages to go on when things get really tough, the expected answer is, “I just take one day at a time.” But I live one moment at a time. When things get hard, and I leave the rest in God’s hands.

Friends

Someone once said that I have an uncanny ability to make friends. They say I can visit persuasively with a member of the legislature one minute and compassionately with a mother of a child with disabilities the next.

I feel it helps to befriend a network of people and develop a technique to draw upon their strengths and integrate them into understanding your needs. However, a word of caution — have the wisdom to use and not abuse these friendships. Never allow your friends to feel as though you are taking advantage of them. At times of trial, it seems hard but doable. Also, be a friend to have a friend.

Fraternities

Dedicate to fraternities that you feel are time worthy. You need an outside interest. Focusing 100 percent of your time and energy on you child’s needs is more stressful and draining than committing 90 percent to your child and 10 percent on an outside interest. I know it seems strange, but I haven’t changed that much. I am still me. I still have goals and desires too. Don’t let your inner spark for life dwindle away.

Read part two here

The four “Fs” are just the beginning of Paula’s knowledge and advice when it comes to caring for family. Her story continues. Click here for more.

Leave a Reply

Your email address will not be published. Required fields are marked *