Professionals are in the position to include parents and help them feel less isolated. A wise pediatrician needs to be sensitive to the entire family’s experience so that he or she can refer the family to the appropriate resources. Sometimes, it is more valuable for a physical therapist to sit and listen to a parent talk than to work exclusively with the child. All too often, professionals stay within their own specialty and feel little responsibility to do more.

When pediatricians, therapists, and teachers walk hand-in-hand with parents and are thoughtful of the entire family’s needs, there will be a sense of true support and the chances of successful treatment for the child will be enhanced. When families are from varying cultures, different from the professional working with them, extra effort is required to understand parental attitudes and cultural differences so communication can be effective and collaboration successful. Collaboration is the key. It is in true collaboration that parents and professionals can develop wonderful goals for the child with a disability. This takes real commitment for the professional to suspend his or her agenda until the parent is fully involved in setting goals that are realistic for both the parents and the child.

Sometimes professionals do not feel that there is enough time to concentrate on families needs. They forget that, by including families in the process, they are empowering the family to become experts in their own realm and within the larger system. In the long run, when parents are fully involved, the care will be more productive.

Parents can act as their own advocates and support others in their efforts to grow and develop. Professionals cannot afford to see parents as illequipped or dysfunctional in parenting their children with disabilities. Instead they must actively enter a partnership with parents. It is the professional that provides a service. It is the parent who makes it work.

Raising a child with disabilities can be one of the most awesome tasks and heart wrenching experiences a parent must endure. It requires, at times, a superhuman strength to meet the terrifying situations that one encounters when a child is struggling to survive. The first moment of discovery or recognition of trauma thrusts parents into a mode of shock, panic and rage accompanied with an overwhelming sense of hopelessness confronting them. Their future feels bleak and weighs heavily on them as their child’s disability looms larger than life. Feelings of grief and guilt over their “lost dream”,  envelops them. A pervasive fear of the unknown rattles the parent’s equilibrium. This can create depressing fantasies of the future that undermine family cohesion.

The onslaught of disability brings parents face to face with the harsh reality of the health care system and all of its accompanying confusion. They are confronted with strange sounding diagnoses, syndromes and acronyms that soon become part of a newly acquired language. These parents, unlike other new parents, are thrust into a larger world of immediate and serious challenges. A condition of their role is the requirement of an inordinate amount of time spent searching for treatment, cures and services for their children.

Looking at the family as a whole, these families, like other families, have to deal with acute and chronic stresses of everyday life. They also face aging parents, teenage rebellion, problems at work, and sibling rivalry. But they have extraordinary additional stresses. They are confronted with appointments with physicians and therapists. They become participants in special programs. They must deal with medicines and specialized equipment. These added stresses demand that parents of a child with disabilities perform in a Herculean manner. Rather than deal with the primary emotional effects created by their circumstances, many parents of disabled children often tend to focus on “fixing” their disabled child’s problems. The more guilt and responsibility they feel and the more “narcissistically wounded” their egos, the more determined they become to right a “wrong” situation. Sometimes parents become polarized and develop an either/ or approach to making choices. They either ignore their own needs in service to the child’s disabilities or else they shut down completely.

In either case, parents feel so overwhelmed by the experience that they cannot manage their lives realistically. The daily stressors begin to build until the entire family’s mental heath begins to erode.

Unfortunately, many new parents of a child with a disability fail to realize that the situation does not warrant that one family member’s needs, however critical, be met continuously while all others’ needs fall by the wayside. In other words, the mother can’t do it all. A balance must be struck between all family members. Despite demands on their own lives, parents must see themselves equally as valuable as their children, regardless of disability. They cannot, nor should they be expected to be omnipotent and totally self-sacrificing. Such expectations all too often lead to parent burnout, failed marriages, sibling problems and even suicide.

To avoid these problems, parents of children with disabilities must be closely supported from the outset to help them deal first with their sense of loss, and then to build enough internal strength to make appropriate decisions regarding all their children and their total family life.

-Next Wednesday’s blog will discuss the relationship between professionals and parents of children with disabilities

I thought this poem written by my 14 year old granddaughter Sammy was so moving, that I wanted to share it with all of you. She wrote this for her Language Arts class in middle school. I think it was quite amazing considering she had never experienced the Holocaust-Thank Heavens!

Why?

Sometimes, when I think of the Holocaust,

I think of…

pain, suffering, and tears.

Emotions race through my body,

sadness wins.

Fear comes in second.

What if this tragedy were to happen again?

I would disappear in thin air.

In Anne Frank’s diary,

she explains how she was kept in hiding.

Just imagine the next minute,

you would be caught

and taken to a Concentration Camp.

The suspense builds more and

more

on you each day.

You would feel trapped.

There would be no sun on your skin.

Jews didn’t deserve that.

Hitler was stupid,

S-T-U-P-I-D!

How could so much hatred,

be targeted on one group of people?

The general public doesn’t often think about families who have children with special needs in the Armed Services. Rather we think about hearty young men and women volunteering to enter the Army, Navy, Air Force, National Guard and Marines. We feel proud of them as they put their lives on the line, but seldom do we consider that they may have serious additional problems like children with disabilities.

In actuality, hundreds, probably thousands of families in the services have children with special needs and disabilities, and are often confronted with huge obstacles. There are single parents, as a result of divorce or injury or loss of life, having to deal single handedly with these obstacles. Many parents of these children are deployed with only one parent or a grandparent trying to deal with overwhelming circumstances. Even though the armed services tries to make provisions for their families, many families don’t often have sufficient funds to cover expenses that children with special needs require, such as: having specialized babysitters to care for their children during an absence, or special costly medication not covered by insurance. Addressing the issues of non disabled siblings who don’t have special needs might increase further challenges for these families. Despite the fact they are connected by their membership in the Armed Services, these parents often feel isolated from each other, not unlike most parents of kids with disabilities.

The Armed Services try to serve these families as best they can, but are limited in time and money to assist them in all their needs. Most of the services have exceptional family member programs that offer counseling and specialized kinds of supports for the families, yet as parents move from one base to another, they have to begin again with new medical services and schools. One can imagine the challenges the child has to endure. Treatment requires consistency as his or her doctors and therapists learn about the specific needs of the child with a disability. It takes time and energy for parents to find the right doctors/specialists to care for the child. New schools don’t always offer what the previous schools offered. All parents of children with special needs have to deal with changing situations, but for an Armed Services family, their problems can be overwhelming.

More Americans must take pause in recognizing that the sacrifices these families are making goes way beyond active duty and dedicating their lives. They are trying like all of us to carve out better lives for their children, but their odds are even greater.

My name is Anastasia Somoza and I am nine years old. I live in New York City and go to school at P.S. 234 in Manhattan. I am in the third grade class in general education. I have a paraprofessional at school to assist me.

I have cerebral palsy and use a wheelchair. I also have a walker and a stander. I use a computer to help me with school work and special software. I wear braces on my legs to help keep them straight.

I like being in a regular class because I now have lots of friends.  As my friends live nearby, they come over to my house for play dates and even sleepovers. At my old school my friends lived too far away and they never came for play dates. We could not go to their house either because we do not have a car. All the kids at my old school were disabled and it was hard for their parents to bring them to my house.

My best friend at school is called Natalie. She is not disabled. She helps me with lots of things, and she plays with me at recess time. I am the only one in my class who cannot walk, but that’s okay. My friends push me around.

I have a twin sister who goes to the same school, but she is in a special class. She uses a computer to talk, and a different computer to do her studies. She also uses a wheelchair and a stander. She is very smart and I hope she can soon be in a regular class just like me. Thank you.

This was a fun interview I did for La Jolla Light:

What brought you to Del Mar?

A spur of the moment decision created by finding the perfect house on the perfect beach in the perfect town in the US’s best city, San Diego!

What makes this town special to you?

The beauty, the quiet and the people who live here, all add up to a uniquely personal hometown kind of feeling.

If you could snap your fingers and have it done, what might you add, subtract or improve in the area?

I would like to see more successful businesses lasting here. We need some unique boutiques, specialty store and mom and pop establishments. Even a few more restaurants would add to the charm.

Who or what inspires you?

I have worked with hundreds of families with children of special needs. These parents’ courage, perseverance and determination to help their children achieve their potential against huge odds are my greatest inspiration.

If you hosted a dinner party for eight, whom (living or deceased) would you invite?

Jackie Kennedy, Meryl Streep, Eleanor Roosevelt, Ronald Reagan, Stephen Hawkins, Franklin Roosevelt, Thomas Jefferson, Governor Sarah Palin

Tell us about what you are currently reading.

SHANTARAM HALF BROKE HORSES, CITY OF THIEVES

What is your most-prized possession?

My husband of 56 years – Don

What do you do for fun? (or What are a few of your all-time favorite movies?)

I always have fun just by living, I love being with my whole family on family adventures, traveling, movies: American in Paris, Shindler’s List, Blind Side, Slumdog Millionaire.

Please describe your greatest accomplishment.
#1 Having our children
#2 Founding KIT, making a difference for ALL kids
#3 Writing Dana’s Legacy, helping families grow despite their traumatic lives

What is your motto or philosophy of life?

“Stay with it, Go as far as you can with your dreams”
“Pay attention to your instincts, when it’s time to stop what you’re doing, you will know”
“Live by the wants, not by the shoulds”

A beautiful girl

“Gayle! Gayle! Wake up!” The nurses were calling out my name and shaking me to try to awaken me. I began to open my eyes, lying very still and feeling heavy. My body was as sore as if I’d been hit by a two-ton truck. They continued to shake me, saying , “Gayle, Gayle, look at your baby!” I slowly turned my head and saw a beautiful little baby, my daughter Dana. Don and I had said if we had a girl, we’d call her Dana, a beautiful name that made us smile every time we said it.

Now there she was, more than eight pounds, not at all the small baby the doctor had predicted. With light reddish-blond hair and big, brown eyes, she was beautiful! Through my tears, I saw that she was crying, too. Though still heavily drugged from the anesthesia, I noticed that Don still wasn’t in the room. Where was he? Why wasn’t he here?

But before I knew it, the nurses took Dana away—even before I could ever hold her. I fell back into a gas-induced stupor and slept until the next day.

For the rest of the story, pick up a copy of Dana’s Legacy and be INSPIRED! bit.ly/amagft

In the hands of strangers

The whole experience seemed surreal. It was as if they didn’t even see me. I was in the hands of strangers, a doctor who seemingly didn’t care and an anesthesiologist that knew next to nothing about me or my condition. It was doubly hurtful to go from a caring physician who’d left explicit instructions for my care, to being treated by Dr. Bradford who willfully ignored those directions and an anesthesiologist who went along with him. They gave me no words of comfort, no words of encouragement. All I saw in their faces was grim determination.

The delivery room became frantic as the doctors shouted directions to each other. Clearly, they were now panicked and working under tense conditions. They had to deliver this baby quickly. Hours and hours had passed since the evening, when my water bag broke, to now, the wee hours of the morning. Finally, they could see that my baby was in distress and that if it stayed any longer inside of me, more damage and possibly death could result. Seeing all this happening while still sitting on the edge of the operating table, I wanted to scream at the green-garbed, masked hospital staffers, “What’s going on? Tell me the truth. Now!” But I couldn’t scream, and even if I had, no one could or would have told me.

I felt totally deserted. They worked on me as if I were an inanimate object. I remember wanting to freeze time and yell, “Stop! Listen to me!” At that moment, a mask was pressed over my face. And the next thing I knew I was spiraling downward into darkness.

I was out cold. Later, I was told they’d administered gas because the baby’s life was seriously threatened. Now knowing that our baby could die, they performed an immediate Caesarian. Complications arose, which I’ll share with you shortly, but I was advised after the fact that gas is extremely dangerous, even deadly, to a baby in the womb.

“The longer I live, the more I realize the impact of attitude on my life. Attitude to me, is more important than facts. It is more important than the past, than education, than money, than circumstances, than failures, than successes, than what other people think or say or do. It is more important than appearance, giftedness or skill. It will make or break a company…a church…a home.

The remarkable thing is we have a choice everyday regarding the attitude we will embrace for that day. We cannot change our past… we cannot change the fact that people will act in a certain way. We cannot change the inevitable. The only thing we can do is play on the string we have, and that is our attitude… I am convinced that life is 10% what happens to me and 90% how I react to it. And so it is with you…WE ARE IN CHARGE OF OUR ATTITUDES.”

-Charles Swindoll

In the hands of strangers

The whole experience seemed surreal. It was as if they didn’t even see me. I was in the hands of strangers, a doctor who seemingly didn’t care and an anesthesiologist that knew next to nothing about me or my condition. It was doubly hurtful to go from a caring physician who’d left explicit instructions for my care, to being treated by Dr. Bradford who willfully ignored those directions and an anesthesiologist who went along with him. They gave me no words of comfort, no words of encouragement. All I saw in their faces was grim determination.

The delivery room became frantic as the doctors shouted directions to each other. Clearly, they were now panicked and working under tense conditions. They had to deliver this baby quickly. Hours and hours had passed since the evening, when my water bag broke, to now, the wee hours of the morning. Finally, they could see that my baby was in distress and that if it stayed any longer inside of me, more damage and possibly death could result. Seeing all this happening while still sitting on the edge of the operating table, I wanted to scream at the green-garbed, masked hospital staffers, “What’s going on? Tell me the truth. Now!” But I couldn’t scream, and even if I had, no one could or would have told me.

I felt totally deserted. They worked on me as if I were an inanimate object. I remember wanting to freeze time and yell, “Stop! Listen to me!” At that moment, a mask was pressed over my face. And the next thing I knew I was spiraling downward into darkness.

I was out cold. Later, I was told they’d administered gas because the baby’s life was seriously threatened. Now knowing that our baby could die, they performed an immediate Caesarian. Complications arose, which I’ll share with you shortly, but I was advised after the fact that gas is extremely dangerous, even deadly, to a baby in the womb.