Bessy and Harry

I'd like you to meet Bessy, She is white with some gold stripes and she is pretty huge. Bessy is our 1999 Chevy Hi top accessible van with a wheelchair lift. We purchased Bessy about 10 months ago, she was dirty, needed tires and other mechanical gizmos and gadgets, but we did not have much money so we decided to "take a Chance" so we "adopted her" and brought her home. Our search had effectively covered 3 counties, many cities and leads that just did not pan out. We finally found her, the big white hi top van with the braun lift. It needed new tires, the brakes were bad, the a/c needed to be completely overhauled. We did not realize then that we had purchased THE ORIGINAL MONEY PIT of vehicles. We woke up each morning saying a little prayer that our Big Bessy would start and carry us through the needs of the day. We did not quibble about the amount of gas she drank or the need for a emergency fund that we put aside for the moment when Bessy emergencies frowned on us.

Two days ago, Bessy decided that she needed a rest, one of many since we adopted her. Once again she decided to turn herself off and not move, worst thing was she stopped in the middle of the street and there was no way we could move her over to the side. After a few minutes of our bewilderment, the sweetest burly gentleman approached us and asked if we needed help, at least getting our lady to the side of the road. We thought he was going to bring up his truck and push but, oh how wrong we were! He went to the back of the van and without another word, pushed Bessy as my husband steered her to the side of the road!

With Bessy now safely out of the way of traffic for both her own and traffic's sake, the next "UH OH" moment occurred when we realized that the reason for the "Bessy run" was our daughter Laura's need to get to her college Spanish class to take her final. How were we going to get Laura and her power chair picked up from campus and get her back home? I spent one frantic moment in a dazed and confused state, then sprung into action, knowing her class was going to end shortly, I began calling some local cab companies in hopes that they would have a vehicle to get her home. A anxious search lead me no where. Finally I called our county transportation office hoping they might have a list of companies that had a vehicle that could get Laura home. I got the answer I needed! A cab company had just obtained 3 accessible vans but they usually booked them days in advance. That feeling of relief suddenly became even more filled with angst then originally. I explained to the dispatcher, Sheeana, that there was no other way to get my daughter home. Low and behold Sheeana showed her compassion for others. She asked for my cell number and told me that she was going to try something. What she tried was Miss Keisha, an amazing woman who felt compelled to help. She was off duty and had taken home the company van. Sheeana, thinking quickly, remembered Keisha so she made a call and within 20 minutes this caring incredible woman arrived. She first picked me up so I could help locate Laura who was waiting for us at school. Miss Keisha was an expert; she pulled out the tie downs and seat belts necessary for Laura's safety and in a quick 2 minutes had the company's van ready for Laura's ride home. She was not on duty, you could tell by her attire, pretty dress and very high heels, but that did not stop her from helping when she got the call.

On the trip home we found out that the company was instituting a special program for riders needing to feel independent enough to go to recreational places on their own. We filled out an application for Laura, which is now in process and took information to spread through the disability community here. What was a horrible moment had suddenly become one of excitement to share new support for the people in out community, as well as giving Laura the opportunity to have a new freedom for getting around!

Meanwhile, I left my husband with the van and not much else. No cell phone and a mechanic on the way that we did not even know! No joke...6 hours and $300.00 later, he drove the van home, the problem had been a small computer that does something or other to keep the van running!

We decided that we needed to step up our search for a second vehicle to "back up" Bessy. So today, after another search or 10 on Craig's list, we brought home Harry. Harry became a part of our life due to the tax return funds we were saving for just this thing! Harry is a 2002 Buick Rendezvous. He runs well, at least it seems that way! The chances of both of Bessy and Harry going down at the same time is hopefully not very good. Harry has a hitch and a wheelchair lift that goes in the back of the car so we have the ability, with a bit more difficulty, to be able to transport Laura's chair along with Laura.

I am telling this story because it is a fact of life, the needs that we face as caregivers and people with disabilities is different and more challenging and often frustrating. Although when a Miss Keisha or Miss Sheeana or the owner of the small bookstore who saw us struggling with Bessy in the heat (we live in Florida) and came out with cold water and the invitation to use his store's bathroom and a/c or the bear of a man who pushed the van out of the street...when people like these walk into your life, the moment and the struggle becomes just a little bit less frustrating and upsetting, it shows that Life has it's amazingly good moments...

Here's a shout out for Diversity!

For many years now, I have been involved with volunteer opportunities regarding Disability Advocacy. I have served on Boards, Councils and with support groups. I have seen how slowly the wheels of progress and understanding move but I have been able to SEE those wheels move towards a better awareness and understand of the needs, hopes and dreams of people who live their daily lives with challenges.

About 2 years ago, I received a notice through one of the information agencies that keeps me and many other volunteers posted about things happening in the community. The notice was about the formation of The Diversity Advisory Council for the county in which I live. They were asking for volunteers who were willing to represent their different diversities, ranging from ethnic cultural, to children at risk and, those who could represent the disability community. In order to qualify, we were asked to write a short essay on the who, whys, what and wheres of our belief that we should be part of this new experiment in working towards community togetherness. Although I could have chosen my diversity to be that of being a woman, or a Jewish lady or one of the fast becoming elderly, I chose to continue what has become second nature to me, that is to represent the disabled community.

About 6 months went by until I received a letter from the Board of County Commissioners asking me to accept an appointment to the Diversity Advisory Council. I was surprised pleasantly, I thought it would be a great adventure to work with people representing so many different cultures, issues and ideas. On January 5, 2014, I attended my first DAC meeting. It has been an awesome learning experience from understanding how government on the county level works, to learning very quickly that the DAC has much to do and many ideas to incorporate into something that has the ability to provide a space where the community can come and be together, not to have the community absorb the differences but to be able to celebrate them and work together to help us "bridge the gaps" so that we can truly become a community made up of differences that finish the puzzle with everyone needing each other to complete a beautiful image.

For the first 6 months, we worked to create a Strategic Plan, which gave us the framework by which we would work, It was a struggle just due to all the unique issues facing each of the diversities we represent. We spent long evenings "hashing out" the language we needed to provide and the understanding of what we planned to do and how we planned to do it. We developed a mission for the DAC, a budget for the expenses and the formation of 3 specific sub-committees which has become the "machine" that puts it all into action.

As a result, in a few months we will have our first Community Organizations Summit with the purpose being to introduce ourselves to the organizations who work day to day with diversities, find out their needs and ideas so that we can compile the statistics and report back to the Board of County Commissioners along with the DAC's recommendations of how best to provide a better way for all people in the county to work together. Among the groups and organizations to be invited will be a large contingent from the disability community. It is exciting to know that those of us who have seen little goals reached will have the opportunity to now see an even larger potential to provide awareness, as well as, a greater opportunity to become part of the community instead of being on the fringe. I am excited and hopeful about the DAC's vision for the future. The dream is that the DAC will become an integral part of city, county and state governments throughout the country.

The DAC is hard work yet remarkably rewarding as well, it provides hope that we all can grow strong by the contributions we each offer in making our community one that works together for a better present and greater future.

Throughout the country, although not part of government, there is an organization called the National Diversity Council, many state have Diversity Advisory Councils for the purpose of advising and carrying out the mission of the NDC. The more present the disability community can be in these councils, the more our voices will be heard and the needs of our loved ones will be met, please encourage your town and county government to think about the formation of DACs, it is amazing how much can be done when we all work together.

[caption id="attachment_7170" align="alignnone" width="500"] Well known Christian singer, Jessica Bittner and Her two adopted children and a new friend who joined them from the audience to sing. Since then, they have 3 more children added to their little slice of diversity. They are so wonderful to see.[/caption]

What About Words?

I am the mom of 3 "special needs" adopted daughters, so I have spent much of life learning a different language. The words:tone, Rocker bottom foot, short term auditory memory delay, mentally challenged, fetal alcohol syndrome, autism and, the list goes on and on. As I joined or formed support groups or became a part of councils and boards, I learned other different words: SMA, cystic fibrosis, feeding tube, nebulizer, oxygen, rhizotomy, It is like we, special need parents used a different language. You know what though, we also have the same language: happy, laugh, love, pride, and cry, tears, sadness, it is all there. I think that we should not focus so much on what makes our kids different because, we lose what is the same; what conforms us to every other parent and family in the world instead of what separates us and excludes our kids.

We say that our kids are not included, yet sometimes, we keep them excluded by the differences we seem to stress. Recently, I saw one of the kids I have come to know on Facebook at a birthday party. Yes, she was different yet, she was also very much the same. Instead of stressing her differences, she was just being a little girl, playing Barbies the best way she could, helping the birthday girl open up presents...okay, I know, there are many of our kids who can't even do that but, just their mere presence adds meaning to those who's lives they touch.

The reason for this post is pretty simple, my girls were 8, 2 and 8 months when they came into our lives, they are now 34, 29 and 26 so I have had many years to see that they excel (as do the people around them) in an environment where those words that stress the differences are kept at a minimum. In this instance, the more they are different the less they are the same. My hope is that all of our kids grow up to be unique and that their communities accept them much in the same way as they would the tall, short, redhead, blonde, etc. and we are able to join together to help each other be all that we can be! Wishing you all an awesome year ahead!!

[caption id="attachment_7123" align="aligncenter" width="350"]My Daughters, Laura-Lee in White Dress and Nikki in Black. ~2004[/caption]

Magic Mike, my grandson

I am the mother of three adopted daughters and one natural daughter. This blog is about Melissa, she is now 34, her mother drank as did her dad. She came to us at 8 years old bringing with her the scars from a life which weighed heavily on her. She suffers from Fetal Alcohol Syndrome which led to mental challenges, learning disabilities and a cleft palate. Her lower jaw was occluded, meaning it jutted out so that when she closed her mouth, her bottom teeth came over her upper teeth. She was also terribly needy when it came to attention and love.

Her struggles were unique and as time went by we found that our major concern for her was to acquire life skills. My husband and I went to all the IEPs and tried to communicate our fear that she wasn't being taught the fundamentals of life: reading and making food from a recipe, writing a check, budgeting, shopping for groceries. The school and teachers did not seem concerned about any of these skills. As time went by her face was becoming worse. Her jaw was occluding more each day! We found "Operation Smile" and they began an extensive bracing program to prepare her mouth for surgery. When she was 16 she had a massive surgery...27 screws, 3 plates and 9 hours of reconstructive surgery by an amazing plastic surgeon named Dr. Ruiz. He donated his time and talent to help kids with clefts and other facial deformities. Melissa was awesome when it was all completed and the swelling went down. Although, we still dealt with the other challenges, she felt so much better about herself. We saw many changes. She had confidence and the terrible headaches she experienced now came about every 3 months instead of 3 times a week!

Melissa graduated High School with a special diploma and at her final Transition Meeting a Vocational Rehabilitation counselor offered us VR's special help in trying to give her the everyday skills she needed. They also offered her a job coach, the ability to go to vocational school and more. She got a job in McDonald's and worked diligently. For the first time in her life she was making money, although she had no idea about it's concept, it was a beginning. Unfortunately, she met the wrong people and they got her to leave us and helped to put her on a road that was not terribly great for her or for us to deal with. All in all, she returned and left 4 times. I got a call that she wanted to see me, my fears had become reality, she was pregnant. Our family sprang into action, her older sister, my natural daughter offered her a place to stay upon the baby's birth. Tracy, her husband, family and friends built a room and furnished it with the crib, fridge, TV and bed. She was given use of the house kitchen, bath, living room, etc as well.

On June 29, 2012, Michael was born, he was a bit early and had some initial problems, but he went home in good health. He was a bit scattered in the beginning. We are not sure if the reason was his premature birth or something else. Melissa was given help through the county's Early Steps Program 0-3 services for at risk kids, WIC and she continued to work on a very part-time bases for McDonald's. While living at her oldest sister's she and Michael remained safe, as we tried to figure out how best to deal with the situation. Now we are that village that was so popular in the past. We, grandparents, Melissa's sisters and some really good friends, as well as, Volunteers of America have provided continuous help and support giving her the opportunity to live on her own with assistance and for Michael to get the support and help he needs to grow straight and strong.

Recently, we began to notice a shift in Michael's mouth. We realized that he was getting the occlusion which meant that it was from his heredity, not part of the FAS as we had thought until now. He has been seen by a pediatric dentist and will be monitored until he is 4. At that time he will be accessed for treatment and that care will begin in earnest.

This Christmas was the first year Michael has begun to understand presents, Santa's Ho Ho Ho, sparkling trees, special food, etc. There is nothing sweeter than seeing this through the eyes of a child.

Our road has been and will continue to be rough for them both but, I am so proud of the family that has stepped up...it has been so amazing to feel the warmth as we continue to work together with the objective being to make sure Michael grows up to be a fine person who is loving and caring. He sure has a large amount of good examples around him!
[caption id="attachment_6976" align="aligncenter" width="300"] Magic Mike with my daughter Laura putting together his first set of Legos[/caption]

[caption id="attachment_6977" align="aligncenter" width="200"] lovable 2 year old, with a bit of mischief in his eye[/caption]

[caption id="attachment_6978" align="aligncenter" width="300"] Michael and his mom[/caption]

50 Pounds of Mashed Potatoes

Today is 11/12... three days after the Night of a Thousand Stars, special dinner-dance we have as an annual event for people in our community with challenges, their families and caregivers. Once again, it was a pretty successful evening. Although it was raining outside, the room was filled with sunshine and warmth.

On Friday we had an orientation for our volunteers, after which, we begin setting up and decorating. This time we were able to have all things completed by about 9 pm. The list of volunteers was filled with people of all ages and backgrounds. There were JROTC cadets, National Honor Society members, civic groups and some people with disabilities who wanted to volunteer, rather than attend. The most touching moment came when a lady walked in with a bunch of little ones aging about 6-12 marching behind her. They announced they were there to help- and the did. They all went straight to work, putting on chair covers, putting luminaries up the stairs of the stage and helping to put on table clothes and lay out napkins. I asked the obvious, where did they came from and how did they know we needed help? It seems that one of the churches sending volunteers sponsors a cottage where these kids who are in the foster care system. They thought that the idea of them helping others would be a good project. The kids asked questions, worked hard and left knowing that they would not see any of their hard work in action. I made a note to myself that after everything was done, these kids had a pizza and ice cream party coming their way!

A few weeks before, I had gone into a local restaurant and asked if I could get a discount on 50 lbs of mashed potatoes. I was asked to wait while they got the chef. By the time he reached me he knew that I was there to ask for something. He reached out his hand and said hello, then had the amazingly warm look on his face. He said, "What do you need?" I answered, "we would like to purchase 50 lbs of mashed potatoes for our dance and, if we could get a discounted price that would help even more." His eyes met my serious face and then he gave me this big smile and said, "You got it! What else do you need?" I told him that was it and I walked out with this incredible feeling of warmth because a man I never met, just gave us 50 lbs of mashed potatoes to help make the evening great for our guests!

This was only one of many good deeds from the community. I can't help but think that there was so much more in that evening then just providing a special event for some very special people. It was an awesome chance to see many diversities at work in a happy and loving way. We had a very well known local weatherman come in a greet our guests, the mascot of our Tampa Bay Rays, Raymond made an appearance, dancing with our guests and taking selfies with them, the lady "pirates" of the local Krewe came to visit. Before leaving weatherman Denis told me we could count on him again next year. The Krewe hugged and kisses us all and even offered to do a fundraiser for us next year. I had already been told that we could count on Raymond's visit as long as we had our dance.

Next year, we need to find a bigger place. We had to turn away about 30 people because we were filled to capacity. We are already searching and hoping to find that perfect venue.

The reason for a piggy back blog about the Night of a Thousand Stars Event this month, for me, is to just give you all the chance to hear about how special and unique our kids are and what incredible things they are able to bring and accomplish. So many of my volunteer's hearts were touched by the joy, happiness and laughter within that room. What is so wonderful is that it is so easy. You share your caring and you get back huge amounts of gratification and joy! I cannot wait until next year! P.S. As of yesterday, 11/11/2014, we have established our non-profit Night of a Thousand Stars Foundation, Inc. It is our hope that we are able to not only bring this very special event to our area but increase our Foundation to offer, advocacy, education, awareness, information and events not only relevant the special needs community but, to to promote togetherness for everyone!