My Cat in the Closet

**originally posted January, 2009**

I wrote last week about embracing HOPE as my theme for 2009. One of the commentors on that post and one of my favorite bloggers, Michelle Morgan-Coole, at the blog, Free Falling, shared some very honest thoughts about what hope means to her.

She said ,” Sound strange, I know, but I have come to the conclusion that hope is bad for the soul. Just my own personal experience, born from living with the seizure monsters for the past 14 years, when everytime you dare begin to hope they might actually be gone (surely close to two years without or even six months must mean something?) they return with a vengance.”

For me, the opposite is true – hope is the only thing that keeps my soul alive. It would be so easy for me to resign myself to Ashley’s special medical needs. But had I done that when I first adopted her at age 2, her doctor’s predictions probably would have come true.

She wouldn’t be walking and running. She wouldn’t be communicating. She wouldn’t be eating. She would probably not be alive.

Hope was the force that propelled me through endless hours of therapy, doctor visits and hospital stays. Hope became my belief that Ashley was very capable of becoming more than anyone else ever believed she could become. Hope is what keeps me fighting school districts and insurance companies. Hope is the battle won for ESY (Extended School Year) services. Hope is the battle won for an accessible bathroom built at insurance expense.

Hope is what allows me to dream of her future, a future filled with love, marriage, a job, and maybe even children. Hope is the comfort in my heart that says she will be ok even after I am gone.

Continuing to nurture that hope is not easy. Like Michelle said, when the seizures keep coming, even after an extended seizure-free time – when the medical conditions don’t worsen but also don’t get better – when almost everyone we meet treats Ashley as less a being than she is – finding and holding on to hope is a struggle.

But like my cat who continues to run into the same closet day after day even though she keeps getting locked in accidentally, I have to keep believing and searching.

Hope is my cat in the closet…

Made My Day!

YES, YES, YES, YES!! There is hope....

State-run institutions will soon be a relic of the past in Georgia under a landmark settlement reached Tuesday that could serve as a model for similar efforts in other states, Justice Department officials said.



(Built in 1842, Central State Hospital was Georgia's first psychiatric hospital, chartered by the legislature in 1837.)

Students Who Cared Enough to Take Action

"I would do anything for them. And you have to look at a child for just who they are, and not just for their disability.”

That statement was made by a high school student - a high school student who fought to have students with severe disabilities included in the school's homecoming court.

If you need something to lift your spirits - if you need to believe in hope for the future - if you need to be reminded that there are some really special teenagers in this world - read this story. I promise you will not be disappointed.

Do Not Quit

It's been a rough week, and I needed to have someone tell me that giving up is not an option. This video did that. Hope you enjoy. Have a happy weekend!

Hope For Independence

I’ve always wondered how Ashley would be able to travel and live independently given both her hearing and vision loss. She has a white cane, and that helps some. But, because she is also deaf, she can’t hear oncoming traffic, the sound of a siren, a car horn, a doorbell, or a smoke alarm. So short of a sighted guide and a fulltime personal aide, I didn’t know if she would ever be able to travel and live independently. But my hopes are renewed after reading this story in the Jerusalem Post.

The Ali Hope Foundation is one of only a small number of programs worldwide to train dogs for individuals who are both deaf and blind. As noted in the news story, of those programs, most, such as Leader Dogs in Rochester, Michigan, train the dogs only as guides, not assistants or alarm messengers. "Leader Dogs are trained to guide individuals who are both deaf and blind, not to alert them to sounds," states the Leader Dogs Web site. Others teach dogs to perform both guide tasks and sound alert tasks, but separately.

But the Ali Hope Foundation is providing a different perspective and the hope of independent travel and independent living for people who are deafblind. The isolation felt by many who are deafblind can be reduced by the dogs trained by Ali Hope, and my hope is that this model will also be embraced in the United States.

Good work, Tamara Meirovich!!

Push Me Pull You

How do you decide what skills to push your child to master and which skills can take a back seat?

When I first adopted Ashley, she was 2 years old and I was new to the world of special needs parenting. I felt I had to push on everything. Ashley at 2 years old had never had early intervention services, never had physical or occupational therapy, never had a parent who encouraged her to reach beyond herself. So, my initial approach was to flood her with experiences.

We had speech therapy twice a week, occupational/feeding therapy five days a week, and vision services three times a week. All that was in addition to what I worked on with her at home, and believe me, I tried to make everything into a learning experience. Then one day, my son, Chip, then seven years old, told me while I was practicing ABC’s with Ashley’s Spaghettio’s during feeding therapy that not EVERYTHING had to be a learning experience. That son of mine has always been wise beyond his years…

As Ashley grew, I have backed off a little – at first, very very little, but still I always kept what Chip had said in the back of my mind. I learned to relax more. I learned that Ashley could work on skills just by having fun. I learned that sometimes she just needs to do nothing. And I think the result is that Ashley is much more well-rounded than some of her equally severely disabled peers.

Believe me, I still work very hard to help her with skill development. She still has a lot to catch up on, and probably always will. But we also have fun – we do things just for the sake of doing them, not because she will have the opportunity to learn. I’m letting her school district, her teachers and aides take more of the responsibility for her education, while I make my major responsibility parenting.

Ashley is a lovely and unique child, and I have made the decision to celebrate that uniqueness. The last thing I want to do is make her feel that she always has to do better and do more. She is doing the absolute best job of just being herself, and I couldn’t ask for anything more.

My Cat In The Closet

I wrote last week about embracing HOPE as my theme for 2009. One of the commentors on that post and one of my favorite bloggers, Michelle Morgan-Coole, at the blog, Free Falling, shared some very honest thoughts about what hope means to her.

She said ,” Sound strange, I know, but I have come to the conclusion that hope is bad for the soul. Just my own personal experience, born from living with the seizure monsters for the past 14 years, when everytime you dare begin to hope they might actually be gone (surely close to two years without or even six months must mean something?) they return with a vengance.”

For me, the opposite is true – hope is the only thing that keeps my soul alive. It would be so easy for me to resign myself to Ashley’s special medical needs. But had I done that when I first adopted her at age 2, her doctor’s predictions probably would have come true.

She wouldn’t be walking and running. She wouldn’t be communicating. She wouldn’t be eating. She would probably not be alive.

Hope was the force that propelled me through endless hours of therapy, doctor visits and hospital stays. Hope became my belief that Ashley was very capable of becoming more than anyone else ever believed she could become. Hope is what keeps me fighting school districts and insurance companies. Hope is the battle won for ESY (Extended School Year) services. Hope is the battle won for an accessible bathroom built at insurance expense.

Hope is what allows me to dream of her future, a future filled with love, marriage, a job, and maybe even children. Hope is the comfort in my heart that says she will be ok even after I am gone.

Continuing to nurture that hope is not easy. Like Michelle said, when the seizures keep coming, even after an extended seizure-free time – when the medical conditions don’t worsen but also don’t get better – when almost everyone we meet treats Ashley as less a being than she is – finding and holding on to hope is a struggle.

But like my cat who continues to run into the same closet day after day even though she keeps getting locked in accidentally, I have to keep believing and searching.

Hope is my cat in the closet…

No Resolutions But a Whole Lot of Hope

“Hope is the thing with feathers that perches in the soul and sings the tunes without the words and never stops at all”

—Emily Dickinson (1830-1886), poet

I'm not going to make any resolutions this new year. I've not had the best track record in past year with that. So instead , I've decided to embrace HOPE as my theme for 2009.

I will blog throughout the year on the subject of hope - my hopes for my family, for myself and my friends, for people in despair and those who are oppressed - for peace, for the world's people to come together in harmony and not war - for solutions and not problems - for renewal - and for resolution to those things that have historically destroyed hope.

I will start today by sharing this video from the Foundation For A Better Life...

What Do You Value?

My brother, Carl, showed me a website last weekend called The Foundation For A Better Life. The Foundation is a non-profit organization dedicated to sharing the values that make a difference in our communities. They create public service campaigns that model the benefits of a life lived by positive values. By doing so, they hope to inspire people to make values a part of their own lives, and then to communicate the benefits to others.

The website is packed full of positive vibes, especially the videos of the TV spots they have created. I've included my absolute favorite one below, and love the message that sometimes looking at a situation in a different way can yield wonderful results. I suggest that you visit to find your favorite!

Growing Dreams

Ashley loves plants and flowers. From the first days she was able to wobble across our yard, she has headed straight for bushes and flowers. She seems to have an innate ability to know which plants are edible and which are not. So, just in case you were wondering – pansies are fine to eat, azaleas taste bitter, and honeysuckle is the best!

Because of Ashley’s enduring interest in plants and flowers, her school team and I have discussed the possibility of Ashley working in a greenhouse. So imagine my delight in finding the following website:

Growing Dreams

One of my favorite things about the website – the statement in the upper left corner – “We honor the concepts of humanity, dignity, respect, hard work, fellowship and friendship.”

I guess I am either going to have to move my family to Chicago or try to start a similar enterprise here!

The Good, The Bad, and The Very, Very Ugly

This past weekend, Ashley and I had three very different encounters with teenagers/young adults. The contrast between each encounter was so great that I decided to share them all.

The Good

Ashley and I were waiting to pick up a prescription from the pharmacy at WalMart. Just as we had paid and were leaving, a young woman – I would estimate about 18 years old – lightly touched my arm and said “Your daughter is so beautiful.”

As I mentioned in my recent blog post about staring, Ashley has some facial differences which most people would not label as beautiful. Her left eye is very small and a cloudy green color. She has some of the classic features of a child diagnosed with Fetal Alcohol Syndrome, and her smile is a little crooked and quirky. I have always felt she was beautiful, but for others, finding Ashley’s beauty means getting to know the goodness in her heart. For a stranger to say Ashley is beautiful, and I truly think she meant what she said, warmed my heart and almost brought me to tears.

The Bad

Just a few moments after our encounter with the young woman at the pharmacy counter, Ashley and I were leaving WalMart to return to our van. A teenaged boy, probably about 14 or 15, spotted Ashley and could not take his eyes off her. It was the classic stare that drives me bonkers. He was with his family, and kept staring as they all walked away from us. Although he was headed in one direction, his head kept turning and staring in our direction. There was a look of both fear and disgust in his eyes, and honestly, I just wanted to smack him. But I didn’t have to – since he was not looking where he was walking, he walked right into a large column at the front of the store. Ouch!! If only he were insightful enough to know that his rude staring resulted in his injury.

The Very, Very Ugly

Yesterday was an unusually warm day in Richmond. By late afternoon, the outside temperature had reached 65 degrees and the sun was shining brightly. Ashley and I decided to go for a walk through our neighborhood – Ashley in her wheelchair and me pushing her.

We live in an older, middle-class neighborhood. Many of our neighbors are elderly, and everyone is friendly. As some of the elderly neighbors move into assisted-living homes, younger families are starting to move in. It’s a neighborhood where we feel safe and where we know almost everyone. However, one of the main roads through the subdivision is a cut-through, meaning people who do not live in the neighborhood use the road to avoid stoplights and take shortcuts to their destinations. Police intervention is often needed to slow down speeders but that has really been the extent of problems in the neighborhood.

As Ashley and I walked around the block, a car carrying 4 teenagers – probably in their late teens – approached us. I wasn’t paying much attention to the car other than to make sure Ashley’s wheelchair was far enough off to the side of the road as to not present a hazard. As the car approached, the driver slowed, and the teenager in the front passenger seat threw a partially-filled fast food cup at us. The cup contained a milkshake, and it hit the top part of Ashley’s wheelchair wheel, splattering milk shake over both of us. As soon as the cup was thrown, the driver sped quickly away and turned at the next street.

12-18 inches higher and the cup would have struck Ashley in the side of her head.

I wondered about the mothers of those boys – wondered if they would care that their sons acted in such a manner – wondered where the boys learned to disrespect and harm others.

It was quite an eventful weekend, and I think I will choose to remember the comments of the young woman at the pharmacy counter. Teenagers like her give me hope for the future. Maybe I can just send Clint Eastwood after the others.

Looking to the Future

I participated in a person-centered planning session yesterday with my 17 year old daughter, Jessica and several other people who are interested in Jessica’s future. Although I had read and heard about the person centered approach for many years, I had never participated in the development of a plan for anyone. I really enjoyed our session yesterday, and I feel much, much better about Jessica’s future.

“The person-centered approach relies much less on the service system by organizing truly individualized, natural, and creative supports to achieve meaningful goals based on the individual's strengths and preferences. No longer is planning based on "the services available at the present time" which has been the age-old excuse that has restricted our thinking, planning, and actions. The person-centered approach creates a team of people who know and care about the individual with a disability, who come together to develop and share a dream for the person's future, and who work together to organize and provide the supports necessary to make that dream a reality.” (Garner and Dietz, Virginia Commonwealth University, Severe Disabilities Technical Assistance Center).

We began our meeting yesterday by asking Jessica what her dreams for her future were. She did an excellent job of expressing herself, and shared with us that she wants to live in an apartment with one or two other people, and she wants to be a nurse or nurse’s aide. She shared that she would like to go on vacation to Florida, and that she would really like to have a boyfriend. Sprinkled throughout her discussion was a common theme – she wants to help people.

After Jessica shared her dreams with us, we all stepped through what would have to be accomplished for her to achieve those dreams. With Jessica’s input, we developed goals for her. She knows that she must do well in school to be able to be a nurse’s aide. She said she needs to be able to read and write well and to use a computer. She acknowledged that she has to be able to get along with people, and if she gets angry, she said she needs to “learn to use her words and not her hands” to deal with that anger. She said she needs to learn how to cook and clean and do her laundry because “Mom’s not going to come to my apartment and do it for me.” Smart girl!

The next step had Jessica listing what her positive attributes were and what her not-so positive attributes were. She feels she is smart, pretty, very sociable, well mannered, and a good eater. She knows she needs to work on dealing with difficult situations and keeping herself safe and healthy. She had some very insightful comments concerning her health given that we are smack dab in the season of overeating and other excesses. She knows she needs to learn how to handle money, and how to travel to and from her job. In short, she has a very realistic and positive view of her future, and her support team and I are poised to support her in getting there.

Our next step is to find a doctor’s office, perhaps a pediatrician’s office, that will allow Jessica to do volunteer work several afternoons each week. Jessica wants to walk with the nurses to bring people to exam rooms, help record their height and weight, and help the children not be so scared. Her charming personality will really be an asset there!

I believe person centered planning is really going to make a difference to Jessica and her future happiness. Although the process is normally targeted to people with significant disabilities, I would like to go through the same process with my two sons. In my opinion, we could all benefit from sharing our dreams and goals, and identifying support systems to help us realize those dreams.

I’m very proud of you, Jessica!

The Very Beginning

“She’s not a pretty baby”, the social worker told me for the third time. “Her left eye is at least twice the size of her right. Are you sure you want to meet her?” I hid my impatience with a calm smile and nodded yes. I was ready to go and meet this baby that was available for adoption.

We drove just a short distance from the social services office, and the social worker slowed in front of a row of townhouses. They were all the same except for their different colored shutters, making them look like crayons in a Crayola box. The social worker parked her car, got out and headed towards the Raw Sienna townhouse. She knocked on the front door, and it was immediately answered by a rather large, disheveled woman. This woman, introduced to me as Linda, the foster mother, headed up a flight of stairs and we followed behind.

The room in which we stopped, a living room I assumed, was small, very cluttered with furniture, and dark because all the drapes were drawn closed. I almost tripped over a porta-crib set up in the corner of the room. We all sat down in the small, crowded room and Linda stepped to the porta-crib and lifted a baby out. Although this baby was 18 months old, she seemed more the size of a 8-9 month old baby. She was incredibly beautiful!

An unspoken rule about who was permitted to hold the baby was transmitted though the room with eye contact between the social worker and the foster mother, and the baby went to the waiting arms of the social worker. I was told this was Ashley, and that Ashley, according to the foster mother, ‘had many needs’ and would have these needs for the rest of her life. She talked further about the difficulties of caring for Ashley and how many doctor appointments she had every week. She told me Ashley wouldn’t eat and didn’t sleep well. She told me that Ashley was fussy and hadn’t met any of the developmental milestones a child her age should have already mastered. She seemed to be trying to scare me or talk me out of wanting Ashley. It didn’t work. I loved her from the moment I laid eyes on her…

Family Reunions

During the 1950’s and 1960’s, children with disabilities were routinely sent to live in institutions. Most had some sort of developmental disability -- Down syndrome, retardation, cerebral palsy or autism. But some were also sent just because they seemed ‘slow’. And many had other secondary disabilities requiring wheelchairs or other mobility aides. As heartbreaking as that situation is to a parent like me who is raising children with even more significant disabilities, I can somewhat understand why those parents of the past made their decisions.

Parents in that other era did not have the supports available to them that are available to parents today. Also, pediatricians and other professionals were advising parents that institutionlization was the best choice for the child. We know differently now, but those early parents were operating without the knowledge we have. The bright light in this dark scenario is that many siblings of those children sent to institutions are now looking for and finding their family members.

The Arc, a national advocacy organization for people with intellectual and developmental disabilities, has created a new online family registry and search service, the FindFamily Registry, to help with such reunions. Read the CNN story about the FindFamily Registry, and the story of one man's search for his sister, Molly.

If you are someone who has lost touch with a loved one who was sent to live in a state institution for the developmentally disabled, I urge you to check out the FindFamily Registry. It's a free service from the advocacy and support groups ARC and ArcLink and may be the connection you need for your own family reunion.

Deep Breaths

Today, my every thought and prayer is with my friend, Lynnette and her beautiful daughter, Brooke. Brooke is scheduled for surgery today – a tracheotomy. A tracheotomy is a surgical procedure that creates a temporary or permanent opening in the trachea. Brooke’s tracheotomy will create a permanent opening and it will help with her breathing problems.

Brooke is only 9 years old and is dual sensory impaired (deafblind). She has been through a lot in her 9 years, but she has faced each challenge head on, and reigned triumphant in spirit. Her smile is contagious, and everyone around her can’t help but smile also. Her laugh is to me the laughter of angels – so pure, so honest, so happy.

There are no words to describe how difficult it is to be a mother and have to make a decision such as this. Brooke’s entire quality of life is going to change – some good, some not as good. Mothers already have so much to shoulder when it comes to raising a child, and it seems almost unfair that they would be faced with these kinds of decisions. But we are – every single day. The only way I can personally make sense of that is to believe that God knows that we mothers are strong enough and wise enough to handle the decisions.

So Lynnette and Brooke, today I will be praying – for a successful surgery, for an easy recovery, for Brooke’s understanding of her mother’s love through all this, and for Lynnette’s peace of mind that she has made the right decision. Both of you, take time to heal and time to grow even closer as mother and child. I love you both.

The tie which links mother and child is of such pure and immaculate strength as to be never violated. ~Washington Irving

Hope

Systems change – a term that is being tossed around by a great many government agencies and organizations that support people with disabilities. The term seemed to rise in popularity about 6-8 years ago. The first thing I noticed was that organizations which once provided a great deal of hands-on, individual support backed away from that support. They began talking the language of strategic planning, technical assistance, and outcomes. Families and people with disabilities were taken by surprise by this shift, primarily because they were given little or no explanations. An even more disappointing aspect of the shift is that in the 6-8 years it has been in vogue, I have seen no systems change.

In concept, the idea of systems change starting at the top of the service paradigm sounds good. In practice, it hasn’t been so good. However, trying to effect systems change from the bottom – a grass roots effort – is too slow and too draining for families and people with disabilities to sustain the effort for the length of time needed. I’ve found through my own efforts that sometimes litigation can effect systems change, but usually not on the scale that is needed. So what’s the answer?

I believe the answer is the development of an innovative, completely different model. I don’t know what that model is yet, but I had lunch today with someone who does. The ideas presented were intriguing. And even though these ideas will take some time and refinement, the difference to me is that they offer hope – hope for a meaningful life for my child, and many other children, with dual sensory impairments.

Until today, my week had been depressing and disappointing. I am facing the ever-present school and insurance battles. I am still struggling to raise my children well, and ensure that their needs are met. I am still worrying what the future holds for them and for other children with disabilities. But now, mixed in with the worry, the struggles and the battles is hope.

I will share more about this new model when the time is right. But that time is not now. Until then, I will be recruiting families who I believe are ready for a change, and ready to commit their time and energy to that change. If you are one of those families, and you have a child of any age with dual sensory impairments, please contact me. If your family is in need of hope for the future, and you want to work towards making that hope a reality, I need your help and am anxious to hear from you.

Thank you, Tim. I am excited about the future of the plans we discussed today, and I am ready to assist in any way I can.