Welcome to our Home
- Welcome to Our Home
By Al Freedman, Ph.D.
Dear Home Care Professional,
Welcome to our home.
Since you are new to the team of professionals who care for our son, I’d like
to share some background with you as a way to begin our journey together.
Six years ago when my wife, Anne, and I decided to become parents, we didn’t
plan to meet you. Back then, we didn’t know anything about pulse oximeters,
wheelchairs, bi-pap (two-way positive airway pressure) machines, feeding tubes,
nebulizers, or standing frames. We didn’t plan for the parade of nurses,
social workers, occupational and physical therapists, assistive technology
specialists, medical supply personnel, teachers and case managers who come and go. We
didn’t anticipate the need for five different doctors to monitor our son’s
progress at the local children’s hospital. And we didn’t plan for our child to
spend fifty-six nights in the Intensive Care Unit before he reached his third
Most of all, when we decided to become parents, we didn’t anticipate that
very bad day when a doctor told us our six-month-old baby had a year to live.
So I hope you don’t take it personally when I say I have mixed feelings about
your presence in our lives. Frankly, I wish we didn’t need you. I wish our
son were going to kindergarten with all the other kids his age, scraping his
knees, running around outdoors without his coat on, and spilling Elmer’s Glue on
his lap. I wish I were spending my weekends watching my son play soccer.
But Jack isn’t going to kindergarten, and he isn’t playing soccer. He can’t
sit up, walk, or talk very clearly. He can’t move his arms or legs. He can’t
dress or feed himself. He still uses diapers. He can’t eat solid foods. He
needs constant supervision and attention. He’s medically fragile. His care is
physically and emotionally demanding.
I wish we didn’t need you, but we do need you.
We need your positive attitude and your confidence. We need your sensitivity
and patience. We need your knowledge, experience, and skills. And we need you
to help us have hope, for our son and our family.
When you begin your work with our son, please carry yourself with confidence.
You’ve been trained to take care of medically fragile children and we haven’
t. Jack’s care requires remembering little things about his needs: what’s
safe to feed him, how to lift him into his wheelchair, when to remove his
secretions, how to set up Jack’s arm supports so he can use his computer, which way
to turn his head when he lays on his stomach, how often to give him a syringe
of formula through his feeding tube.
Although none of this is rocket science, the sheer number of details can feel
overwhelming to a newcomer. But if you feel overwhelmed, try not to show it.
Act confident. Take initiative. Have a positive attitude. Watch us as we
demonstrate how Jack’s equipment works. Ask us questions. Write things down if it
helps you. Enjoy yourself when you’re working. But above all, carry yourself
with confidence. Jack will feel safe if you feel safe.
When you begin your work with our son, please be patient with us. We may
insist about certain aspects of Jack’s care that don’t make perfect sense to you.
It may be awhile before we leave you alone with our son even though you’re
perfectly capable of taking care of him. You may wonder why we ask you about
your own health every time you sneeze or cough in our house. We realize we worry
about Jack just about all the time. Please understand that we simply can’t
help it. From the moment the doctor sat us down and told us our baby had an
incurable, untreatable disease, things were never quite the same again. We really
are doing the best we can.
When you begin your work with our son, please be sensitive to our family’s
need for privacy one minute and our need for your active involvement the next
minute. (As a wise home care administrator I know tells each of her new clients,
“The good news is…you’ll now be getting nursing help in your home. The bad
news is….you’ll now be getting nursing help in your home.”). It’s a skill to
know when to be involved and when to act invisible. Do your best to fade into
the woodwork when Anne or I need to parent our son. But get right in there
with Jack’s physical therapist if she needs your help. Pretend you’re not in the
room when I answer the phone and it’s a client emergency. But offer to pick
up the phone if it’s ringing and Anne has her hands full with our baby. If you’
re not sure which approach to take in a given situation, feel free to ask.
We’ll try to be sensitive to the needs of your family, too. Let us know if
you need flexibility with your work schedule because your mother is visiting
from out of town or you’d like to attend your daughter’s school play. It feels
good to us to help someone else’s family once in a while. We’ll help you out
whenever we can.
When you begin your work with our son, please take the time to get to know
him as a person. Yes, you’re here because of all the things Jack can’t do by
himself. But there’s a lot he can do, too. You’ll be surprised the first time
you see Jack drive around independently in his power wheelchair. Try to keep up
with Jack as he clicks his way through a tricky challenge on the computer.
Feel free to join him in the swimming pool while he works hard in the water with
his therapist. Listen to him tell jokes using his communication device. Enjoy
Jack enjoying the company of his baby sister. Soak up his positive attitude,
determination, and his smile. We think he’s quite a kid. We hope you will,
too. And when you show a genuine interest in Jack, he will fall in love with you
When you begin your work with our son, please teach us what you know about
caring for him. After Jack’s diagnosis, one of the first things we heard from
medical professionals was, “You will soon be the experts on Spinal Muscular
Atrophy (SMA) and caring for Jack.” But I didn’t want to believe our baby had
such a terrible disease, much less become an expert on it. And more importantly,
if Jack really did have SMA and would die because he couldn’t breathe, how in
the world could we become experts on how to help him? After all, isn’t that
what doctors and nurses are for?
Gradually, we did become experts on SMA because Jack is our son and we had to
do whatever we could to help him. But for more than five years now, I feel
relieved every time we meet a professional who knows more about caring for a
medically-fragile child than we know, or at the very least can teach us something
new. As you begin working with our son, tell us what you know, tell us what
you’ve learned, tell us what you’ve seen. We take care of only one medically
fragile child. You’ve taken care of many more than one. You can provide us
with some perspective. You can give us a reality check when we need one. You can
help us take care of Jack when he’s sick. We need your expertise. That’s why
you’re here. Please don’t hold back.
Finally, and perhaps most importantly, when you begin your work with our son,
please help us to have hope.
When we first learned Jack was affected by Spinal Muscular Atrophy, hope was
a scarce commodity in our home. We didn’t hear much from the doctors about
living with Jack from day to day – they didn’t tell us about the good days we
would have together as a family. Looking back, I now realize it was Jack’s job
to teach us these important lessons. After all, doctors at children’s hospitals
don’t spend a lot of time with kids when they are well. Parents do that.
Our son is intelligent and sensitive; he observes all of our words, actions,
and signals. Jack needs us to view his disability and his future with a sense
of hope, whether life feels manageable at the time or not. Three years ago,
when Jack’s bout with RSV led to intubation and a three-week hospitalization, it
was very hard for me to be positive and hopeful. But as I looked at my son
lying in the intensive care unit, kept alive by a ventilator, his eyes wide open
wondering what was happening to him, I believed it was important for Jack to
see me smiling and to hear me telling stories as usual, giving him the message
that I was hopeful and confident of his ability to recover from his illness.
Somehow, Jack did bounce back from that harrowing illness. And ten days
later, after he had been successfully extubated and we were preparing to go home,
the head physician in the Intensive Care Unit came by to wish us well. He
talked about Jack’s remarkable recovery, and he was obviously pleased to be a part
of it. But the doctor’s focus was not on the treatment plan, the efforts of
the hospital staff, or his own good work. He attributed Jack’s recovery to the
“Jack’s a fighter,” the doctor told us, quite matter-of-factly.
Indeed, Jack is a fighter. All of the children you care for are fighters. But
our children can not fight without hope, and it is up to us – parents and
professionals together-- to keep hope alive.
We appreciate everything you do.
Welcome to our home.
Albert Freedman, Ph.D. is a psychologist who works with children,
adolescents, and families in private practice and at Westtown School in Westtown,
Pennsylvania. He and his wife, Anne, are the parents of two children, Jack (1995) and
Cara (2000). Dr. Freedman provides consultation and inservice training to
professionals in health care and educational settings, and he is a frequent
presenter at regional and national conferences on the topic of caring for children
with special needs. His essay, “The Future is Now,” is included in a newly
published book, You Will Dream New Dreams: Inspiring Personal Stories by Parents
of Children with Disabilities (Kensington Publishers, 2001).
Dr. Freedman can be contacted via email at freedman@...
Bridget A. Bailey
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