The Making of a Hero

A Mother's Story of Wilbur Hawke

 

Since I do Wilbur's websites, I'm going to take a liberty here and let all of you see a different side of Wilbur - maybe not different, but from a mother and friend's perspective. Here is my story, starting in 1987.

It all began in a narrow hallway. We would take our children to Step-by-Step each morning, and would pick them up at noon. The hallway was where we, the parents, stood to wait for our children. The kids all had different disabilities, but we all had the same common thread. We got to know each other’s names and the problems that our individual children faced, a few minutes a day, in the narrow hallway. We smiled and made small talk only acknowledging our secret pain with a “look” in our eyes.  At holidays, birthdays, and special events, we got to know a little bit more about each other, but after 2 years, our time was done there and our children were getting “mainstreamed”.

My daughter, Lindsay, and Wilbur’s son, Cayman were the same age and you can’t ever forget meeting Mr. Wilbur Hawke. I can still see his eyes and smile in that little hallway. His wife worked at the Marriott on Marco Island, and I worked there for a couple of years when we moved to Naples in December 1986. I was a server in one of the restaurants and she worked banquets, but we saw each other occasionally. The work thing, the Step by Step thing, and our children being the same age gave us more in common, so we interacted a bit more than with the other parents, and our children exited that warm and safe place at the same time, going into mainstream Kindergarten. We were all so “green” back then and really had no idea what was in store for us or our children. Wilbur lived on Marco and we lived in Naples, so our children would be going to different schools, and at that point, we went our separate ways. You know Wilbur & Cayman’s story, so now I will tell you a couple of pieces of my journey into the mainstream school system.

Pre-Wilbur as  Advocate

My daughter, Lindsay, was born with 3 holes in her heart and was determined to be “mildly mentally handicapped.” At 3 years old, she was behind in speech, with some fine and major motor skill problems, which greatly improved at Step by Step. She loved going to school every day, and I thought she would be equally excited about kindergarten.  She was put in one of 2 classes with 32 children each. Her teacher had no other experience in teaching an EMH student, and she had been a teacher for many years – nearing retirement. After the first 2 days, I had to literally peel Lindsay off of me to get her inside of the school. She was crying, and I was getting daily phone calls from this elderly teacher who was at her wits end, and she was not a bit happy about having Lindsay in her class. Luckily, there was only a bathroom between the 2 kindergarten classes and Lindsay had seen the other much younger teacher with a wonderful smile and a huge, gracious heart. Her children were clearly enjoying themselves, and they had a hamster in the classroom. She started slipping into the other classroom after her potty break to see the hamster. I was getting more calls from this teacher, and was getting angrier by the day. I finally got on the phone one day and called the principal, the superintendent, and everyone else I could think to call. The other teacher, offered to take Lindsay into her class. Lindsay loved her and was finally happy going to school. She would let Lindsay sit on her lap when she read to the children. She told me that the other kids were never jealous, and just accepted Lindsay into their group. She didn’t really learn much, but at least she was in school and was happy. Later on, a neighbor child informed us that during P.E. they would make Lindsay sit on the sidelines while they were playing basketball and other things because she would slow things down, and they didn’t feel she could really participate. I was on the phone again to the school system, and it was a tough year. At the IEP, we went in and listened. When we tried to offer suggestions, I remember getting this patronizing look from most of the people. We didn’t know any better, figured they must know what she needed better than us, and moved on.

We got Lindsay into a different elementary school the following year, in an ESE class, and she stayed there until middle school. I went to the IEP, felt helpless, was sad, and moved on. I didn’t know that I had the most powerful voice in the room. The school system kept those tidbits of parental rights, laws and information very tight-lipped. One of the most shocking things that I learned later on was that the ESE teachers didn’t know about many of the programs and assistance that were legally available for our children either. They were as upset and frustrated as I was. Lindsay’s teacher, asked me to stay after class one day. She proceeded to tell me that she had a little boy in the classroom named George, raised by his grandma, who needed to be in a TMH class. Grandma wasn’t giving him his meds and he was like a caged animal. He had very long fingernails, which Grandma wouldn’t cut, and he had taken a dislike to Lindsay and the teacher. The teacher had claw marks and scars on her legs, and he had begun to do the same to Lindsay. She had one gouge going down her cheek a couple of inches long. They had a teacher’s aide and her day consisted of corralling George in one corner of the room, while the teacher tried her best to teach the kids something …. anything. She started crying out of frustration and fear for Lindsay, and also she knew she was failing at being able to really teach her students. It was one thing attacking her, but now he had targeted another student, my Lindsay. When she talked to the people above her, they told her there was nothing they could do. She quietly and literally begged me to call the head of the Special Education Department and see if I could get her to do something about George. Just to say this also, she cared equally for George, and she knew that he needed to be in the TMH setting to meet his needs, and learn. I didn’t know why she was talking so low until she told me that I couldn’t tell anyone that she had told me any of this or she could very well lose her job. I remember how shocked I was at that, and when I questioned her about it, she said that it was just the way it was, and believe me when I tell you that she begged me not to let it out that she had asked me to call the ESE Director. That was the beginning of a strange understanding that there didn’t seem to be anything that a teacher could do regarding her students and their classroom in the ESE school system. They kept them in the dark as much as they could, and they were made aware that going to the parents was a particular no-no.  I called the ESE Director and it took a lot for me to do that. This was an arena where I knew nothing about and had nothing to put forth except to stand up for my child as best I could. Those kinds of confrontations were very difficult for me. The previous ones that I told you about were so bad that they pushed me over the edge into a mother’s rage for my child. This was different because I had to be so careful about what I said. I finally got her on the phone and after my emotional appeal she told me that she was sorry, but there was nothing that she could do. Basically, she told me that she had no power to transfer a student – period. I could tell she wasn’t moved in any way by what was happening to my daughter, and she made it clear that the request was denied.

Those snippets are a few examples of what it was like for children with special needs in our area, and also for the parents and teachers. This went on and was the norm for the next couple of years. Parents and teachers just had to settle with what they had, and hopefully the children would learn a little bit along the way. Teachers were forbidden to reveal the truth to the parents.

Sometime in 3rd or 4th grade, my husband went on a charter boat deep sea fishing trip. This guy taps him on the shoulder and says, “Hey Dean. Do you remember me? Wilbur Hawke?” When Dean (my husband) got home he said, “You’re never going to believe who I saw today!” As he talked about their conversation, he said that Wilbur pretty much talked about nothing but “the system” and what he had begun to find out about laws and rights, telling him about what he had been through with Cayman, and asking him about Lindsay. Dean said that Wilbur had went on and on and on about it all. By this point, I had been going to the IEP’s alone, and trying to handle what I could. He said that Wilbur had given him his phone number and that I should call him. That begins the REAL story.

Post Wilbur’s Advocacy

From that point on, I never, ever went to an IEP meeting without Wilbur. He pushed me and prodded me to read and learn like he was doing, but, in all honesty, I didn’t do the research and just counted on Wilbur to know it and do it for me. He never let me down, all the way through graduation.

As the years progressed, Wilbur had begun being so involved in the laws, and in advocating for not only his son, but for all of us. He did it for free – all of it – for years. I watched as he lost his marriage. I watched as he struggled financially, but kept right on marching for ALL of our kids – for free.

The more he learned, the more changes started happening for the ESE environment – for the kids, the parents, and the teachers. He started having conferences to teach parents how to be an advocate for their own child, and educating teachers on what was available and what was required. Anytime I needed to be strong and assertive for Lindsay, all I had to do was just mention these two words – “Wilbur Hawke”. He put the fear of God in the “establishment” because they knew I was another parent who they couldn’t just patronize, and they couldn’t tell me there was nothing they could do anymore. When I would set up the IEP meeting, and I told them that Wilbur would be there, there were always some of the “big wigs” in attendance. It was amazing and funny to watch how many people from all venues of the education department started popping up there. In our meetings the latter part of high school, we would sit and negotiate with the higher echelon in power. Sometimes the IEP’s were contentious, but even so, what I saw happening in the Administrators was a growing respect for Wilbur. He was a pain in the butt and a thorn in the side for many of them, but they truly knew that for him, it was all about the “kids” and they knew his motives were pure and not some power trip.

Wilbur and my family have shared meals together, and have kept in contact over the years since that boat trip. I may be a little bit prejudiced because I’ve known him so long, and we’ve shared heartaches, along with victories all along the way, but I truly am honored to know him. I am so proud of all that he has accomplished for “the kids”. He is a machine. He doesn’t stop. He won’t ever stop until he draws his last breath. He truly is “The Terminator” for people with disabilities because when he says, “I’ll be back,” he means it and it happens. I know in my heart that if he became homeless, he’d find a tent and a bicycle to still do all that he does. He is absolutely selfless in his God-Ordained mission. He doesn’t even have pets because he has to be able to go whenever and wherever he needs to go at any given time. His life is a living sacrifice for those who cannot speak for themselves.

Do you know why he is able to get things done that no one else can? It is because people trust him, no matter if they are in the school system, the legal system, parents, teachers, and other peers. If you ever doubt his ability to make things happen that look impossible, he once got me to go before the School Board and stand before them about an issue. That was no small feat on his part, but I did it, scared out of my wits, barely able to sign my name. He told me I could do it. He said that I needed to do it for others, and he somehow got me there, and I did it. I can’t remember what the issue was, but it was something that the teachers needed. They were waiting for the phone call to see what happened, and when I told them that it was a “go”, they were all cheering in the background. It was an amazing moment. Of course the school didn’t know that I had done it at the request of the teachers, and Wilbur, but it was awesome. Even though Wilbur is very perceptive and persuasive, he has an ability to empower people to do things way out of their comfort zone. He can see hidden potential, and even more importantly, he is able to pull it out of them. I was so proud at what I had accomplished, and to this day, I still see that he was able to pull strength out of me that I didn’t know was there.

They trust him because they can see, and have seen over the years, that he is the real deal. He’s certainly not in it for the money. No matter if they agree or disagree with him, they know that he is doing what he does solely because he doesn’t want another parent or child to go through what our children went through, and what we went through as parents in those first years of school.  He wants to put information and education out there that is easy for people to get, yet comprehensive. This is what he lives and breathes every single day of his life. He helped me get many services for Lindsay over the years and I can tell you that what he did for us made a tremendous difference in the quality of education that she received.

Respect, trust, integrity, passion, a focused vision are just a few of the things that Wilbur brings to the table. He gets things done because of those qualities. People trust him! No one could ever meet Wilbur Hawke and spend an hour with him without knowing that his motives are absolutely 100% pure.  He says what he means, and means what he says. He is intuitive, and instinctively knows the right thing to say or do at the absolutely appropriate and critical moment in order to make yet another goal accomplished. He can take next to nothing and make it into something great for the rest of us. I dare say that his work over these past 20 or so years have impacted and made better the lives of thousands of parents and children.

Wilbur’s new project, South Florida Parent Center, will bring all of the things that parents, teachers, caretakers, etc. need to know into one place. Instead of having just one person to turn to for your issue or problem, you will be able to go to our site and find answers and resources there. Basically, this is “Wilbur in a web site”! Wilbur is very realistic about the fact that at some point, his work will be done. This bothers him, and this website addresses that issue. His love for helping people with disabilities will follow him to the grave. It is the very essence of who he is.

I know that I have repeated the trust & respect issue several times, but it is important and it speaks of his ability to bring people together from all aspects and agencies for special needs, and that requires a smart, intuitive guy who can facilitate meetings and projects, bringing all parties into the mix and magically bring them together for that particular goal. He does it with ease. Part of it is his charm, but a lot of it is that it only takes a few minutes to see that he’s the real deal. Look at all he has accomplished from 3rd grade when he willingly picked up the baton for the kids – and he has never looked back.

I am the person, who does the websites for Wilbur, and since that’s one ability he doesn’t have, I am putting my story out there for you because you should know it, and because I can, and he can’t stop me. J He recruited me for this job in January 2008. I had my doubts in my abilities, but he said I could do it. And just as he said – I did! I do the websites for Wilbur because it is my way of giving back and helping “the kids”. I do it because it is a small thing that I can do to thank him for all he did for Lindsay. All of us who have known Wilbur through the years have been riding on his coattails. You will be honored to be a part of his vision as well.

If any of you “fathers” out there have a desire to be more involved in what Wilbur does, I know he would gratefully welcome you and would mentor you. It would be a great way for you to give back to him for all he has done for all of us.

Wilbur is truly a hero.

Sincerely,

Debbie Schneider

A Very Grateful Mom

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