An omen

By the ninth month of pregnancy, feeling very heavy and uncomfortable, I was home alone and mindlessly switching television stations when I began to watch with fascination a cerebral-palsy telethon. I’ll never forget the young man who walked on stage with a severe gait and spoke indecipherably as he announced the name of the song he was going to perform. He sat down and, with great difficulty, played the piano.

He did so magnificently—but that’s not what I focused on. I saw his disability, not the gifts he brought to the stage. I broke into tears while watching him perform, and even afterward I continued to think about how seriously disabled he was. I didn’t care about his accomplishments. His performance didn’t seem like a miracle to me.  Instead, I thought that disability was probably the very worst thing that could happen to anyone. Stunned, I sat there unable to move, flooded with a fear that just wouldn’t go away.

A powerful fear

At that moment, somewhere deep inside me, I had a powerful sense that I was going to give birth to a child with some kind of disability. It was an omen, which I never disbelieved for a moment.

Isn’t it peculiar how things happen? So many times in our lives something occurs—you run into someone or don’t, make or miss a deadline, get or lose a job, or catch or miss an airplane or a train—and you wonder: Why did that occur or fail to occur? What if I’d been five minutes earlier or later to that scene? Is there any rhyme or reason to what’s happening now? What’s the purpose of these events? Are they connected or disconnected, purposeful or random?

Timing is such a huge part of our life, such a noticeable, prevalent, and powerful part of our existence. I’m now sure that seeing that disabled young man on TV didn’t happen out of the blue. It sent me a message, and the message shouted: “You have good reason to be so scared.”

Don’t miss my next blog on “One week to delivery”.

Hopes dashed for all those who thought Oprah would always be there  to sign them up for their  one of a kind special book. Aspirations caved in. Where does one go from here? Maybe one more chance before she leaves? I don’t think so! Back to the never ending searching to find someone else who believes in waiting for Godot.

I know some of you are anxiously awaiting the continuation of my story, Dana’s Legacy. I promise, it will happen soon. Before I do that, I want to tell you about inclusion. It is all part of the story, anyway.We all know the word inclusion, but do we think a lot about it?

Because I am a mom of a child with a disability who passed away many years ago, I never forgot what it was like for a child with a disability not to be included with typical kids. Most people don’t think about it, if there is nothing wrong with their child. An opportunity presented itself for kids with disabilities in 1995. A lovely woman left a bequest to fund activities for kids with disabilities in San Diego. I suggested that this money should be used to bring everyone together in social and recreational after school programs. So we did. The first place was the Lawrence Family JCC. They did a masterful job, and they still include kids with disabilities in all of their programs. So Don and I went further and created in 1997, KIT, Kids Included Together that now serves 258 sites in San Diego and 24 states, and the US Navy worldwide.It keeps growing. It is a miracle to watch the kids play together and become friends.

So after watching this miracle, I wrote a poem about……Inclusion

Inclusion is being part of the whole. It is belonging to the human race.

Inclusion is the path toward living, loving and playing together. Together means all, not some.

Inclusion is common decency and the right thing to do, first, foremost, and natural, and not given a second thought.

Inclusion breaks down fear and prejudice. It is gentle and simple in awareness, and powerfully awesome in reality.

Inclusion is NOW.

Today’s blog is a letter from one of the parents and a dear friend in my parent support group:

“As a parent of a child, oh pardon me, young adult with special needs, I too, have lived life differently. Once the glasses came off and I could see clearly my new role as parent, advocate, medical advisor, teacher, aid and caretaker, I realized I was my daughter’s only hope. This was to be my new role: to see possibilities not limitations and to teach all those working with my daughter to view her same way I did. This meant changing aids or medical professionals if they could not see her the same way. After all it is far easier to describe all that is wrong than to look at what may be possible.
It is with this attitude that my daughter recently graduated with her BA in Communications for CSUSM. The process for entering high school to this recent event was by no means easy, in fact it was fraught with obstacle after obstacle, even going so far to say that her high school counselor could not understand why she was even trying to go to college, and it was his opinion, a waste of time. Not only did this counselor feel this way but so did her Jr. College Counselor at Mira Costa.
I must say the proudest moment was when Erin after leaving her college counselors office all sad and discouraged, somehow got the courage and propelled by anger, turned that power chair around and punched it with full force, storming through his office and demanded he sit down, which he did immediately, perhaps in shock he obeyed. She proceeded to ask him who he thought he was, destroying dreams and telling her she could never go to college. It was her dream, and his job was to help her get there. What kind of a person was he anyway, using his power and position to destroy dreams, and what a horrible job he was doing when he did not have a single resource to help her? In fact she proceeded to tell him all we had done to this point to ensure she gets her BA. At the end of an hour the counselor ended up asking Erin if I would help him with resources which of course I was happy to do. She recently went to his office bragging about her accomplishments and rightly so.
You see, since Erin was a little girl, we always dreamed big. We had an end result in mind, then proceeded to break down the process to get there, and we got there each and every time. I always say dream big, modify if you must along the way, but have the dream.
Erin was born at 29 weeks and diagnosed with Cerebral Palsy. At 2, she attended UCLA until 5, and then we moved to Switzerland for a year, and then to San Diego. I have so many stories to tell about our adventures, and in time they will all be told.
Erin was a happy child as I did all I could to ensure a super childhood which meant I had to take care of myself. As if I am strong, I can be strong. The key components of a special needs parent is determination and the ability to look beyond what they are told.
When Erin was just 9 months old, I met Gayle Slate who had a private practice helping parents of special needs children as well as a parent support group. I immersed myself. We both ended up moving to San Diego in 1994, unbeknownst to each other. I attempted to find a group that provided what I had in LA, but could not. What I was looking for was positive support, with others, who wanted to help their children, and a place where we could share resources. There was no such group in San Diego at that time, so I approached Gayle to start our own, which we did in 1994, and it is still going strong today. After 15 years, we still meet once a month and some of the moms have been attending for almost that long. We accept new parents as others move on. This has been a life source for all of us.  At different stages in our children’s lives we need different things and the group was always here to cry with, laugh with and provide encouragement when we felt hopeless.”

Gayle’s comments-This is one of many fabulous stories coming from a mom who has been through many tribulations, but who has a done a miraculous job raising her daughter Erin to become accomplished in her own right. It has been my privilege to have known them both for so many years and I am proud to have witnessed them becoming the inspirational people they are today. I am sure that Erin will continue to grow and  become a strong influence on others with disabilities. I’m sure you will be hearing more about Christine and Erin plus others  in my future blogs.

Thought you’d like to know that I’m changing my blog to once a week on Wednesdays, instead of every other Wednesday.  You can also follow me on Twitter (gayleslate) and Facebook (Gayle Slate).

I have had over 38 years of experience working with families and their children with disabilities as a family therapist. I am the parent of Dana who had cerebral palsy and whose life and death inspired me to work with hundreds of families. So I guess that qualifies me as an expert when it comes to dealing with the  challenges facing parents, siblings and grandparents. I decided I would provide tips gleaned from my knowledge and past experiences in order to help families of children with disabilities cope with the their difficulties. I recently was interviewed on a local TV program, and I will soon be downloading portions of that interview on my blog, Twitter and Facebook. If you like what you hear, you can go to my website to view the entire interview at this same address: www.danaslegacy.com, where you can view not only me, but a mom and her daughter who has cerebral palsy, both who have tons of interesting things to say. It’s very inspirational. Stay tuned for the TV segments and helpful tips for you to follow. Feel free to leave questions and comments. I will also be continuing Dana’s story in blogs to come.