How did Bobby’s parents manage?

This summer while on a trip back to my childhood community, I visited a cousin who is now 90+ and living in a care facility. Eloise and I took a walk through the hallways and I was surprised to run into Bobby who is also a resident.

Bobby is the brother of one of my high school classmates. His family lived on a farm near ours, went to the same church, and was just always a part of the usual activities in the community. So, why do I mention Bobby? Well, it’s because Bobby has special health and behavioral needs. As a child and teenager, I didn’t think too much about Bobby – he was just Bobby and everyone helped take care of him. But as an adult, I look back and think, “How did his parents manage? How did they take care of Bobby and his brothers as well as give time to their marriage and personal lives?”

My guess is that while Bobby’s parents had their ups and downs, they took care of themselves. Providing care for a child with special health and behavioral needs means that the parents/caregivers are in it for the long haul. The caregivers must take care of themselves first so that they can take of their child.

Powerful Tools for Caregivers is a program for caregivers of children with special health and behavioral needs. Caring for a child with special needs changes parents’ lives. In this program parents learn tools to manage self-care. Here’s an example of one tool – taking action with stress reducers.

Participants in the classes learn to identify their personal warning signs and sources of stress. Then they think about what they have done to successfully reduce stress. People share things like: walk, visit a friend, listen to music, read, not try to do everything, play a sport, etc. Stress reducers are personal and what suits one person may not suit another.

The important point is to find ways to reduce stress – something that is enjoyable and works for you. Even little things can make a big difference for parents. As I remember, Bobby’s parents found ways to reduce stress. They were a part of church activities, Bobby’s dad played horseshoes with the neighborhood men, and Bobby’s mom tended pretty flowers in their yard.

If you’re interested in learning more tools to help you thrive as a caregiver of a child with special health and behavioral needs, check out Powerful Tools for Caregivers classes in your area.

 

Donna Donald

Donna Donald

Donna Donald is a Human Sciences specialist for Iowa State University Extension and Outreach who has spent her career working with families across the lifespan. She believes families are defined by function as well as form. Donna entered parenthood as a stepmother to three daughters and loves being a grandmother of seven young adults.

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Son’s Easy Temperament an Asset for Coping with Physical Disability

The temperament experts—describe three temperament types—feisty, slow to warm up and easy.  I have blogged about my feisty 15-year old son, my slow to warm up 20-year old daughter and now I am going to share with you my experiences raising my 21- year old “easy” son.  Has parenting him always been easy?  Not in the least!

My first born son—Jared has always been an easy temperament kid.   He really never cried.  I fed him every four hours because that’s what the doctor said.  He didn’t demand it.  But I knew I should.  He didn’t use a pacifier.  He was content on his own.   He smiled at everybody.  He adjusted well, despite his parents’ inexperience.    He was simply the most content, happy baby.  His easy temperament was a good match for my sometimes “feisty” temperament.

My concerns with his physical development started at 10 months of age when I noted that he couldn’t sit up on his own.  And at 18 months, I really began to worry because he still wasn’t walking.  I remember our family doctor looking at him as he referred to a child development book and said,  “Hmm, he really should be walking.  “He looks strong enough”.  As a first time mom I wondered,  “ was he just “too easy-going?” ,  “ was he lazy?”, or “could it be something else?”.  But his easy going style, and a long waiting list for the developmental clinic kept these questions in my mind for several months.  And still he couldn’t walk.

Then at 20 months of age, Jared had his first of several febrile seizures.  Most twenty month olds wouldn’t have tolerated that EEG cords, the IVs and the liquid epileptic medications.  But Jared did.  He Smiled, and actually seemed to enjoy the interaction with the nurses and lab technicians.  The testing went on for a couple of months and then just prior to his 2 year birthday, we received his diagnosis of Duchenne Muscular Dystrophy.  Duchenne Muscular Dystrophy is a progressive neuromuscular disease that typically effects only males, because of the x-linked genetic mutation.  Boys are sometimes slow to develop physically, sometimes have speech and cognitive challenges as well as cardiac and pulmonary issues, and lose the ability to walk around the age of 12.  So at the same time that we celebrated his first steps, we mourned the losses that lay ahead his first future knowing that he would permanently lose his ability to walk.  His easy going temperament has been the key to our acceptance.  He has never expressed his desire to do anything physical that he wasn’t able to do.  His positive attitude is infectious.  His easy temperament is an asset.  I hope that you  can see the temperaments that your children have as an asset too!

Janet Smith

Janet Smith

Janet Smith is a Human Science Specialist-Family LIfe with Iowa State University Extension and Outreach. She currently provides family life programming in eight counties in southeast Iowa. Janet is a "parenting survivor". She is the mother of Jared-21, Hannah-20, and Cole-15. She and her husband, David have faced many challenges together, including their son Jared's Duchenne Muscular Dystrophy diagnosis.

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