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

 

Exactly As They Should Be

Sometimes I have those moments where I just can't believe this is my life.  How did I get here???  This morning was one of those moments.

I was driving down the highway to take Wade to a makeup speech therapy session, and the accessible parking tag hanging from the rear view mirror caught my attention.  I looked down at my lowered--and very messy and cluttered--floor boards in our wheelchair accessible van.  How did this happen?   My dream car--a lovely, roomy minivan with more cupholders than necessary--had to be sold for this.  (I know you're probably still stuck on the part that a minivan was my dream car, but it was!)

I remember the nights when staying up past midnight meant that I could be lazy the next day.  Or if I did have to go to work, I could suffer through the day knowing that the couch would be waiting for me as soon as I made it home.  Instead, last night I was up past midnight sitting with two dear friends at my kitchen table as we deliriously hammered out goals and objectives for an upcoming ARD meeting...and it wasn't for Wade.  And when my head finally hit the pillow, I knew that today would not welcome laziness, but just more work for everything that lies ahead.

When did I become the stay at home mom that doesn't have time for anything?  I don't even have time to clean my house and do laundry on a regular basis.  I can never seem to figure out how to land and just be.  There's always something to do.  I haven't updated this blog in over a month, even though I have so much I want to say and keep record of.  Who said that stay at home moms don't really work???

I shouldn't be surprised, really.  Growing up, I just knew I'd be married by the magical age of 23.  I'd have 2.5 kids, a dog, and the white picket fence.  I'd be a teacher forever.  However, I didn't get married until I was 31.  I owned a house with a friend when I was single.  I moved to Florida.  I moved again to Texas.  I never thought I'd live away from my family.  I was 30 before I finally became a teacher, and now I am blessed to be able to stay at home with Wade.  As I've figured out, things rarely go as planned, or as I envision them anyway.  So, to have a perfect pregnancy at the age of 32/33, with a most traumatic delivery, which resulted in my first child having a disability, shouldn't really shock me.  Most of the time it doesn't.  Sometimes though, the simple things like an accessible parking tag and wheelchair accessible entrances are glaring signs that my life is so much different than I ever, ever imagined it would be.

Then, I see this sweet face looking back at me, and I realize things are exactly as they should be!

Wade in his turkey hat he made in school.

I'm Tired

I originally started this post on Monday, August 1. It's now Sunday, August 22! Right in the middle of it, I got a phone call from Curtis telling me that his doctor was admitting him to the hospital for two blood clots in his right thigh. I'm thrilled to report that, after a three week recovery (4 nights in the hospital and the remainder at home), Curtis is doing much better, and will be returning to work tomorrow. I find it quite ironic that I was writing a post about being tired. The past three weeks just added another element to my already challenging routine! I was going to delete it and start fresh, but as I reread the post, I realized my feelings haven't changed much. In fact, the mental and emotional fatigue has reached a new level with the start of school tomorrow. I'll hopefully address those aspects in a few days. Until then, I just want to close this post out and fill in the blanks later.

I'm tired. I'm physically, mentally, emotionally exhausted. I hate when I get to this point, and I typically try to keep it under wraps. But for some reason I want to share this time. Not to get pity, but so other families who have kids with disabilities know that they're not alone.

Spring was very, very busy in the Jordan household. Wade and I traveled to VA in March for his magnetic therapy where we stayed for two weeks. In April, we followed up with a trip to New Jersey for a week of intensive MEDEK therapy. In the midst of this, we were also preparing for his annual ARD and an assistive technology evaluation. I was on a constant "high", trying to get things done and keep everything straight. The end of the school year was right around the corner, but the stress of the ARD didn't let me enjoy it too much. We went to ARD in April and ended up asking for a new assistive technology evaluation because the first one wasn't done correctly. The school had six weeks to complete that and rewrite new goals and objectives, which meant our annual ARD was scheduled for the last week of school. Unfortunately, all members of the ARD still weren't seeing eye to eye at that meeting, so we closed it out and will have a new ARD at the beginning of this school year to write more appropriate goals and objectives. The bottom line--they recommended that Wade attended a general ed pre-K class next year instead of a self-contained special education class. I'm all for that. However, they didn't think we needed to address academic goals because they think he's in line cognitively with typical four years. I totally agree he knows a lot, but he's still not going to be able to access the curriculum the way a child without physical disabilities can. And for that reason, he needs goals and objectives to help him with this. Luckily the general ed teacher at the meeting agreed with me. There's also still the matter of communication. We will be starting the school year without a recommended device by the school. I am thrilled that they recognize how smart Wade is, but without a plan in place on how he is going to express this knowledge and access the curriculum, we're not going to get very far. Needless to say, we left the meeting with some things unresolved. Which means I have had all summer to dwell on what's going to happen in just a few weeks when school resumes.

So, that's where a lot of my mental exhaustion stems from; trying to make decisions for Wade that are in his best interest. Decisions that are going to set him up for success, not failure. Decisions that, even at the young age of four, can potentially affect the rest of his life. One thing that I don't think teachers understand is that the decisions that they are helping make for my child affect them (the teachers) for one year. After the school year is over, Wade will move on up to the next teacher. However, those same decisions affect Wade, as well as our family, forever. That's not to say that the decisions made by the teachers are done so lightly. I completely understand that they throw their heart and sole into their kiddos. But at the end of the day, they get to go home. As parents to a child with a disability, we never get a break. Which leads to my emotional fatigue.

My life forever changed on May 22, 2007. Never in a million years would I have dreamed that my time would be consumed with therapy appointments, doctor appointments, ARD meetings, advocacy meetings, etc. I thought these first years would be monopolized by play groups, mommy meet-ups, birthday parties, and fun outings. I thought my biggest concern would be which park we would go to on Saturday. The life that I thought I had so much control over came crashing down. This definitely isn't the life I would have chosen, but it is the life God gave me. I can honestly say that I wouldn't trade if for the world. However, that doesn't mean that I don't like it sometimes. That I don't wish I didn't have to worry about all the things I worry about. Even a simple task of running to the store can be an obstacle. I hope and pray that once I get to the store I can find an accessible place to park. Not so we don't have to walk as far to get to the door, but so I have a place to lower the wheelchair ramp so that Wade can get out of the van. Then I hope that the store is set up in a way that the aisles are big enough to navigate. In the midst of that thought, I try to figure out how I'm going to carry all of my purchases to the register without everything crashing to the floor.

I worry about things that I don't think I should really have to worry about right now. I know that every parent thinks about who will take care of their children if something were to happen to them. But it seems like a double whammy to me. My child comes with a lot of strings attached. It's hard to not think that his disability will be a burden on the person/people who will take care of him. Just from a financial standpoint, it's a burden. So, instead of just focusing on life insurance for us and a college savings account for him, I'm figuring out the best way to allocate money and adjusting his special needs trust so that even if he has money in his name through a trust, he can still qualify for other services before diving into that account. And besides the financial side, I have plans and visions and dreams for Wade. I'm willing to fight for them. I'm his mom. Someone else isn't going to have the same visions I do, and they're not going to have the same fight I have.

Then there's the whole emotional aspect of people looking at Wade as being "different". Sometimes I don't feel like going anywhere because I don't want to have to interact with people in public. Sometimes I try not to make eye contact because I don't want to see pity in people's eyes. I don't want the obligatory smile as I push Wade in his wheelchair. But whether I like it or not, I do it. It's good for Wade to be around people, and it's good for people to be around Wade. Quite honestly, Wade just attracts people. Every single time we go out, someone engages us in conversation, and Wade eats it up. He giggles and smiles and kicks his feet in excitement as he tries so hard to form some words. He's quite the social butterfly!

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And that's where I left this blog nearly three weeks ago. I could elaborate more on the emotional exhaustion, but I'll leave that for some future posts! I'm sure with school starting tomorrow, I'll have tons to write about.

Just to skim the topic of physical exhaustion, Wade is heavy. Not because he weighs so much, but because he's dead weight. When you carry him, he doesn't support himself, so it's like carrying a sack of potatoes...or 10!!! Because of that, I'm worn out. We basically have to do everything for him. It's like having the needs of a baby in a four year old's body. In order to feed him, we have to carry him to the table. In order to bathe him, we have to carry him to the bath. In order to put him to bed, we have to lift him up. If he wants to play with toys, we have to help him. If he wants to use his iPad, we have to hold it. If he wants to get around the house/other environments, we have to carry him. Of course, he has adaptive equipment (wheelchairs, strollers, gait trainers, etc.) to assist him with these things, but we (Curtis and I) still have to do the majority of the work at this point. The list goes on and on. It takes a lot of upper body strength to care for Wade, and quite honestly, it's something I lack in! The truth of the matter is, he's only going to get bigger and heavier. At the end of the day, I can't wait to get to bed. Sometimes I even wake up in the mornings anxious for bedtime:-)

However, when it's all said and done--no matter how tired I am--this is my life, and I'm truly blessed. It's not always pretty or easy, but it's full of hope and inspiration and life lessons. Just this afternoon someone said, "I don't know how you do it." I think it's something parents of kids with disabilities hear quite often. Sometimes I don't know how I do it, but I just do. And you would too if you were me.

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.

PPCD...Take two

We went back to the school on Thursday so that Wade could be evaluated by the OT, PT, and speech therapist.  I have to say, this time around, it was a much better experience.  One of the teachers also joined us to take notes.  Unfortunately, Wade had just come from an hour of PT and OT, so he wasn't in the greatest of moods.  Plus, there were a bunch of strangers surrounding him wanting him to perform on demand, which he does not do!  

The school is beautiful though!  The halls and classrooms are all so brightly decorated.  It seems like a very inviting atmosphere.  I was very impressed with the equipment in the motor lab and the equipment that they are wanting to buy with some stimulus money.  They even had a brand new Kid Walk in the motor lab.  The staff were all very nice and friendly and seemed genuinely interested in doing what is best for Wade.  I was able to express my concerns about Wade being in a self-contained classroom.  I want him to be around typical kids as well.  I know he needs extra help with mobility and self-help things, but he also needs to be surrounded by kids who are walking and talking so he can learn from them.  Wade is a very social little boy, and he needs that interaction.  All in all, it was a very informative meeting, and I feel a lot more comfortable with sending him to school in the fall.  (And, I only cried twice!)

On Friday afternoon, we had our official ARD meeting.  (IEP meeting for those who aren't in TX.)  Being a special education teacher, I've sat through my fair share of these meetings.  It's a whole different ballgame sitting on the other side of the table!  Things were going along very smoothly.  We were happy with the goals and with the therapy time.  Then came placement.  I told them that at this point, we are looking at just doing a 3 day school week so that Wade can still go to his regular sitter 2 days a week to get that social interaction.  They stumbled a little, but said it was doable and he would just be counted absent on the two days he's not there.  Of course they strongly suggest 5 days, and when we come back to ARD, if he hasn't met his goals, it's probably because he's only in school 3 days a week.  Blah, blah, blah.  One of the teachers did suggest that maybe he could still come 5 days and go to daycare after school since he would be in the morning PPCD class.  That was something I hadn't thought of, so I appreciated the suggestion.  While I know Wade will flourish in this new environment, as a mom, it's very hard for me to let my 3 year old baby go to school!!!!!

After that was out of the way, they said they were recommending he be in a self-contained class for 3 1/2 hours... Stop right there!  I jumped in and asked if there were other options (I knew there were).  Since this center also serves pre-k and the employee daycare center, there are definitely typical kids Wade can be with.  So, although I'm not completely comfortable with this time, we decided on a half-hour inclusion time out of 3 1/2 hours.  I settled for this since I'm contemplating the 3 days a week.  If, however, Wade shows them what he's made of, we will definitely be going back to ARD after school starts.  I'll give it a good 6 weeks for everyone to settle into a routine, then reassess the situation.

So, it's official.  On August 23, my baby will be starting school!

And so it begins...

I've been off the blogging scene for almost two years now.  I went through and deleted all of my old posts, but I kept the ones that pertained to Wade.  I figure today is a good day to start recording our journey again because things are definitely changing.  Starting with our first meeting to enroll for PPCD.

Our first meeting was scheduled for today at 1:00 with Eagle Mountain Saginaw ISD.  We still are not 100% that Wade will attend PPCD in the fall, but I want to make sure I've researched all of our options in order to make the best decision.  Since he turns 3 next Saturday, we have to get the ball rolling.  Technically he can start school the day he turns 3, but since it's the end of the school year, we're definitely opting to wait until fall to begin.

Things did not start out on a very good foot.  When the diagnostician came out to greet us, she told us that we were supposed to have brought Wade with us.  Well, when I asked over the phone if there was anything we needed to bring to the meeting, she should've told me at that point!  She said she assumed I would've known to bring him.  First of all, even though I'm a special education teacher and I've sat in tons of ARDs,  I've never had my own child go through the process.  Second of all, it was never explained to me that this particular meeting was for evaluations.  I thought it was for all the adults to discuss plans for Wade and evaluations would come later.  After that little mishap was cleared up, we decided to proceed with the evaluations we could do without him.  We now have to take him back Thursday morning so he can be assessed by the OT, PT, and speech therapist.  Our ARD is now scheduled for this Friday at 3:15.

And so it begins.  Our official start to the world of special education in the public school system.  I have to honestly say, I'm NOT ready for this!