Our Vision for Wade

It's been a long time. A really long time. I've had a lot of great things to post about, but the not so great things have invaded my thoughts and my time. I hope to get back to blogging soon, but for now, I thought I'd share our vision for Wade. I think it's so important to have a vision that is written down that can be shared with others. This way everyone knows what your expectations are. When you're questioning certain decisions, you can look back at your vision and ask yourself what is going to best help you accomplish this vision.

I've known about vision statements and student portfolios for awhile now. I talk about their importance and encourage others to come up with a vision for their own children. I've just failed to sit down and write one myself. But as always seems to happen, I found myself in a position where I really needed a vision. I needed a way to articulate to those who are in the position of educating Wade what we want and expect for him. I shared this vision with everyone at the table at our most recent ARD meeting last week, and I plan on reading it before every ARD meeting in the future. I think it's a quick and easy reminder about why we are gathered at the table and who we are there for; we are there for Wade.

For more information about vision statements and student portfolios, visit Texas Project First.  They have some sample portfolio pages.  I used wording from a few different samples and molded them into our vision for Wade.

Our Vision for Wade

We have a vision for Wade; a vision that goes far beyond the walls of a school building.  Our vision started out pretty simple, for Wade to be included.  As the years have flown by our vision has begun to evolve into something even bigger.  Not only do we want Wade to be included in his school, neighborhood, and community, we also want him to be a contributing and active participant in his own life.

It is also important to us that Wade be surrounded by people who love, support, and care for him in a way that fosters his independence without creating a sense of “learned helplessness”.  We want Wade to be a part of a community where differences are accepted and attempts are made to educate those who may be fearful or ignorant with regard to the culture of disability.  We believe that language and words are powerful and see value in using People First Language where Wade as a person is put before his disabilities.  By modeling this language, we are attempting to eliminate the prejudice that surrounds those who have a disability while encouraging others to see past the disability.  Wade is the amazing little boy he is because of his cerebral palsy; it is a part of him, but it does not define him.

As Wade’s parents, we are an integral part of the team that supports him and his education.  It is vital that the lines of communication remain open and that the staff working with Wade support our vision for him.  We cannot do this alone.  It will take all of us working together to make school a place where Wade can be successful and thrive both academically and socially.  Comanche Springs Elementary is part of the foundation Wade needs in order for him to achieve whatever dreams he desires.  We are confident that when given the same opportunities as every other child, Wade will find his voice and be successful in school, community, and life.

“My identity is the product of my history. My history is that of a person with cerebral palsy. If I didn't have cerebral palsy, I wouldn't be who I am; I'd be someone else. Frankly, I like who I am, I like my history, I like my life. I'm not sure I'd sacrifice who I am for the sake of normal movement and speech.” ~ Norman Kunc

 

One, Two, Three...

FOUR!!! As of two weeks ago this past Sunday, Wade is four. Unfortunately, I was wrapped up emotionally in Wade's annual ARD (IEP meeting), so I haven't had the energy to post an update. So, here we go!

The first few days of Wade's life were filled with anxiety, to say the least. I honestly didn't know whether he was going to live or not. Every time the phone rang, my heart stopped while I listened to Curtis talk to one of the doctors. We found out when Wade was four days old that he did in fact have significant brain damage, much to one of the doctor's surprise. At that point though, I was just so relieved that he seemed to be out of the woods. The grim diagnosis was actually a relief, because at that point we knew what we were dealing with and we could move forward. It was definitely the most difficult thing I have ever dealt with, but I was just so very thankful that Wade had survived. We'd deal with everything else as it came along.

On that Saturday, May 26, 2007, we were told that Wade would never walk. He would never talk. He would be in a wheelchair the rest of his life. He would never throw a baseball. I suppose the doctors have to tell you worse case scenario, but I just felt numb as I sat there listening to those words. I didn't have anything to say, but in my heart of hearts I knew that Wade would be more than what these doctors were saying. I saw that glimmer in his eyes, and I knew there was more to him than the doctors could see on their tests.

Birth Day!


One


Two


Three


FOUR!!!



Looking back, I can say that we've seen the biggest changes in Wade this past year. The first year to two years, we were in survival mode. We had a routine, and we followed it well. We went to scheduled doctors appointments, and I did a lot of research on the computer. I learned a lot about cerebral palsy while cycling through the grieving process. During Wade's third year, I started branching out a little more. I started to get a little more involved in advocacy, and I started pushing the limits a little bit more. I was learning more and more about alternative treatments while trying to find the line between too much therapy and just living a "normal" life.

In spring of 2010, right before Wade's third birthday, I was able to submit my resignation as a special education teacher. It was a bittersweet decision, but it has been such a blessing. I've been able to focus so much more energy on Wade instead of balancing my two lives. Although I was so sad to say goodbye to a job I loved, I was thrilled at the idea of being able to do things with Wade that I hadn't been able to do because of work obligations. I believe it was perfect timing. Emotionally I was ready to conquer the world with Wade. In the past year Wade has gotten an iPad to begin communicating better with us. He has also gotten his first wheelchair--a power chair at that! He started school, and he has flourished in that environment. We traveled to VA for Magnetic Therapy, which we followed up with an intensive session of MEDEK Therapy in NJ. I've thrown myself into advocacy and learning, and we've even made several trips to our state capital in Austin to fight against the budget cuts which affect people with disabilities. The combination of all of these things has made such an impact on Wade. He is absolutely thriving, and he is making progress in leaps and bounds! No, he's not walking or talking in the conventional sense, but with the help of a wheelchair and AAC devices, he's holding his own rather well! And I never give up hope that one day those pieces of equipment will only supplement his own legs and his own voice. Never underestimate what a difference a year can make!

I'm Sensitive

I'm about to go somewhere I've yet to go on my blog. I'm a little hesitant to do so because I don't want to mess up the carefully crafted balance. But, I feel the need to share because this situation really hurt my heart. It has to do with Wade and school. Please know that we have had a pretty decent experience this year. I LOVE the school that Wade attends. The halls are bright and cheerful, and the staff are amazing. Teachers and other staff members who don't necessarily "teach" Wade interact with him and call him by name. I have never once worried about his health, safety or well being. Wade absolutely beams when we get to his classroom, so I know he feels loved. So please don't read this thinking that I dislike anyone at the school. I don't. But sometimes when you're fighting so hard for what you think is best for your child, feelings get hurt, and people take things personally. It's nothing personal against anyone. I promise.

For almost a week now, I have not been able to get the lyrics to "I'm Sensitive" by Jewel out of my head.



Without going into too much back story, we are in the midst of completing an assistive technology evaluation for Wade so that we will all better understand what supplementary aids and services he needs to help him throughout his day. This ranges from positioning, to accessibility, to motor skills, to vision... I could go on and on. Basically, we need to find out what Wade needs to help him be the best that he can be. Whether he's playing on the playground or doing work in the classroom. Assistive technology can be something as simple as a grip for crayons and markers so that they're easier to hold to something as complex as a $10,000+ communication device.

Unfortunately, the first assessment that was done did not look at all of these areas. It was basically just a report stating that Wade needed an iPad for communication. Included with the report were new goals and objectives for the next year. I'll spare the details, but I'll just say that Wade has already "mastered" the proposed goals and objectives. What that told me was that no one really knows what Wade is capable of doing because of his physical limitations and lack of access. During that ARD meeting (IEP meeting for non-Texans), we decided on a new plan of attack. A new AT eval was recommended, along with some other assessments so that we could have a baseline of Wade's present levels of performance. It was agreed that we would not be using the assessments for formal scores and that the information gathered would not have to follow testing protocol. Meaning that Wade could answer questions and show knowledge any way possible--with his iPad, with pictures, symbols, yes/no choices, etc.

I'm a pretty sensible person. I've shed a lot of tears in our four year journey, but I think I'm pretty realistic about Wade's abilities. I don't live in denial, but I do have hopes and dreams about what Wade is going to accomplish. I try desperately to concentrate on the positives. No, he doesn't walk using his legs, but he's learning to operate his power wheelchair. He doesn't use his hands to activate the iPad, but he's pretty darn accurate using his forehead and nose. He doesn't always greet everyone with his version of "Hi," but he certainly lights up a room with a loving smile when you walk in. If I focused on everything he "doesn't" do, we'd never be able to leave the house. I guess that's why I was so blindsided when I received the Developmental Profile 3 in Wade's backpack last week. This is a tool to screen for developmental delays. (Which, for the record, we already know he has!!!) Here's a look at the questions that I was to answer "yes" or "no" to.











I got to the third set of questions and just started to cry. Then I got mad. It was a slap in the face to see these words in black and white glaring at me. In my opinion, it was a completely unnecessary assessment to send home. We all know just by looking at Wade that the answer to the majority of the questions are going to be "no". Again, we're not looking for formal scores here. We're trying to see what Wade knows and doesn't know and how to find out what he needs to help him access his environment. What information can possibly be gained from this assessment??? After I got over my sadness and anger, I composed an email asking this question and then requested that it be omitted from the evaluation. In response, I was told that they use the tool to get "additional academic information" but "it's not necessary for the particular assessment that we are doing with Wade". Really??? Then why send it home?

"So please be careful with me. I'm sensitive and I'd like to stay that way."~Jewel

*I'd also like to reference back to this post. I think it speaks volumes.