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

 

A Day Late and a Dollar Short

World Cerebral Palsy Day was...yesterday.  But, such is my life, I always seem to be a little late to the game.  I've known for awhile that it was coming up on September 4, but I just didn't plan my day well enough to post on time.  So in honor of World Cerebral Palsy Day, and in honor of Wade and everyone else out there with CP, here's an awesome video that I first saw on a blog I follow, Unexpected Lessons.



After I shared the video with Curtis, he asked me what I would have told myself on the day Wade was born; the day our lives were turned upside down.  You're a lot stronger than you ever imagined you could be.  My words to Curtis would have been, You'll make new dreams.  What would Curtis have told me, knowing what we know now?  You're gonna do awesome!

The journey isn't always easy, and it's certainly filled with many obstacles, but this life--raising a child with cerebral palsy--is the most fulfilling ride I've ever been on.  It's changed me in ways I never imagined and I look forward to all the wonderful and amazing experiences it's going to bring.

Source: tumblr.com via Jennifer on Pinterest

All Good Things Must Come to an End

It's upon us; the last weekend of summer.  On one hand I'm very excited to start a new chapter in Wade's school career.  On the other hand, I'm surely going to miss our lazy, carefree days.  But it will do us all good to get back into a routine.  School starts at 7:40 this year!  Yes, you read that correctly.  The kiddos can be dropped off as early as 7:10, and they go back to their classrooms at 7:20.  Thank goodness the school is just around the corner.

We had a wonderful summer, and I took a much needed break from reality:-)  Wade had his g-button surgery on June 19, and about a week later, we were headed to VA for three weeks.  We celebrated July 4 with the family.  My mom even arranged to fly my brother in from FL as a surprise to everyone. It's been a few years since all of the siblings, spouses and nieces/nephews have been together at one time.  It was a much needed--but way too short--reunion with everyone.

Wade and his new cousin Rowan

Siblings, spouses, and kids

During that week, Curtis was also interviewed by 3E Love for our family to be "3E Lovers of the Month".  We all took the opportunity to put on our 3E Love tee shirts and pose for a family picture!  You can find the interview here if you missed it.

While in VA, we took a trip to Water Country, USA in Williamsburg.  Wade had a blast!  I wish I had pictures of him going down the waterslide all.by.himself!!!  He loved it!

This is NOT Wade, but it is the slide he went down alone. 

Malibu Falls--Wade sat in my lap and laughed the whole time!

Big Daddy Falls--Again, not our family, but Wade loved laughing while his Aunt Jordan screamed in fear!

As a result of that exhausting adventure, I decided that if I didn't want that to be Wade's last trip to the water park, this mama needs to get herself in shape!  It takes a lot of energy and stamina to carry Wade up flights of stairs to go down water slides all day.  As soon as we got back to TX from VA, I came up with a plan, and I'm proud to say I've stuck to it.  More info on that later!

Curtis was only able to stay in VA for a week.  After he left, Wade and I went up to Northern VA to see one of my dearest friends.  We ate at a wonderful restaurant in Old Town Alexandria and spent the evening visiting some shops and the waterfront.  It was great girl time...with Wade in tow of course!

My dad also took us out on his boat, and Wade was able to watch him catch a fish!

On the boat

Nonnie, Wade, and Grandpa

Once back home in TX, we've spent the rest of the summer swimming, relaxing, and hanging with friends.  We also battled the heat a few times and headed to the zoo for some morning outings.  All in all, it was a very successful summer.

While we were in VA, I was able to spend some time with my grandmother.  She had been in the hospital and a nursing home for a few weeks for blood clots, but was able to come back home while I was still visiting.  I am so thankful for the time we got to spend with her because only about three weeks after I got back to TX, she passed away.  I hopped a plane and took another unexpected trip back to VA by myself for a few days.  Although the circumstances were not desirable, I had such a nice time visiting and spending time with family whom I hadn't seen in such a long time.  Grandma is certainly going to be missed, but she leaves behind a large and beautiful family.

Our family--minus Curtis and Wade

All the grandkids

Everyone together--minus a few that couldn't make it.

So, that's our summer in a nutshell! It's now back to reality!

A Long Time Coming

We finally bit the bullet.  After a few years of wondering and going back and forth, we scheduled surgery for Wade to get a g-button.  For those who don't know, a g-tube/button is a tube that is inserted through a small incision in the abdomen into the stomach.  The purpose is so that feeding can be done directly through the tube into the stomach.

Microvasive G-button

Wade eats like a champ.  We have to chop his food up or give him things that are easily mashed, but for the most part, he eats well.  He doesn't chew food well and typically sucks food more than he chews, but he makes it work.  There have only really been a handful of times that he's choked on a piece of food that was too big.  I've also seemed to notice that when he goes through a growth spurt, he has a harder time coordinating his oral motor movements.  My theory is that it just takes him a bit to adjust to his body growing.

Even though he eats well, feeding is still a huge source of stress in our household.  If I'm being honest, it ranks pretty high up there as one of my least favorite things to do.  It takes so much time and effort to feed him since he doesn't have the physical ability to feed himself.  Add feeding him on top of feeding myself, and we can end up at the dinner table for well over 30 minutes.  The effort of doing this for three meals a day plus snacks here and there is exhausting.  Not just physically, but emotionally as well.  Wade burns so many calories because of his constant muscle "movement".  Sometimes I'm worried that he's burning more calories than he's consuming.  For a couple of years, he stayed at 27 pounds.  He was growing taller and skinnier.  We finally passed 30 pounds this past fall.  Now, he stays right around 31 pounds; even hit 34 pounds one time!  His nutrition, hydration, and weight are always weighing on me.  It's such a tough call because while I want him to gain weight, I don't want him to get too heavy since I have to lift and move him so much.

With our feeding success, I guess you're wondering what made us go the g-tube route.  It basically boils down to hydration.  Wade is not getting enough fluids to keep him properly hydrated--especially in this Texas heat!  We're lucky if he finishes a whole sippy cup or box drink of juice or milk in a whole day.  Six to eight ounces of liquids in one day just isn't cutting it.  His fluctuating tone also makes drinking difficult for him.  Some days he can suck out of sippy cup (we remove the plastic valve) without any problem.  Other days he can't coordinate his sucking, swallowing and breathing and ends up choking.  Once he chokes and coughs, he pretty much refuses to drink anything else for the rest of the day.  Which makes sense; I wouldn't want to drink anything if I choked every time I swallowed.  We've had a few swallow studies, and on our most recent one--last Monday--things looked good.  He swallowed well and did not show any signs of aspiration.  But again, with his fluctuating tone, it all just depends on the day.

As I mentioned, we did not come to this decision lightly.  There were days that things were great and I doubted the surgery.  Other days I was almost in tears because Wade wouldn't drink anything.  A friend gave me some excellent advice.  She told me to just treat the tube as an insurance policy; when we need it, it's there.  That little bit of advice sealed the deal for me.  Just because we have the tube doesn't mean we have to use it.  It's there for the days his tone is sluggish, or when he's sick, or when he has a growth spurt.  We can still feed him orally like we do now, but if it's a day I'm worried about his caloric intake, I can just supplement with some pediasure.  My plan is to give him about 4-6 ounces of water three times a day via his tube in addition to the little bit he drinks with his meals.

Wade's first attempt at feeding in the hospital.  He fell asleep right before we hooked him up.

  

I'm really happy that we made the decision to get the tube.  The weight that lifted from my shoulders after surgery was amazing.  I really didn't realize how much anxiety I was experiencing due to hydration and feeding issues.  The actual surgery was super quick.  From the time he went back to the time they let us know he was out of surgery was less than 30 minutes.  We were able to get a room fairly quickly, and we stayed the night at Cook Children's Hospital.  We got home around 8:30 Wednesday night June 20, and unfortunately, we have not had a peaceful night's sleep yet.  Wade ended up running a fever that Saturday until Sunday.  On Tuesday--a week after surgery--I took him to the pediatrician to see if he might have an ear infection.  I was really praying that it would be the answer to our hourly wakings of screaming and crying.  Unfortunately, there didn't seem to be any signs of ear or sinus infection.  Our pediatrician mentioned that he might be having nightmares.  Whatever it is, I hope it ends soon.  The situation was also made a little worse because we traveled from TX to VA Thursday night.  Considering it was a 23 hour trip, Wade did really well.  Hopefully we'll settle into a good sleep routine here shortly.

Halfway to VA!  Getting hydrated after breakfast at Cracker Barrel.

  

Besides our sleep disruption post surgery, the only complaint I have is with the actual button.  Our surgeon opted to go with the microvasive button initially.  The problem is, the little flap that closes the hole when it's not being used sometimes pops open by itself.  It has also leaked a few times.  The microvasive is supposed to last Wade about a year, but if the leaking continues or I can't find a good way to keep it closed, we'll probably make the switch to a Mic-key or Mini One button sooner than later.  I did make some really cute tube pads to help absorb the leaks.  Other than that, the site is looking pretty good, and we've had no issues with granulation tissue...yet:-)

Reusable cloth tube pads.

Avoiding the Unavoidable

Wade's fifth birthday has come and gone; the birthday that I've been subconsciously anticipating pretty much since his birth on May 22, 2007.  From early on, everything I read mentioned so much about early intervention and how the brain develops so much between birth and age five.  There were times that I got so hung up on this medical view and somehow convinced myself that once he turned five, our attempts at different therapies to make his life easier wouldn't be effective.  I know it sounds silly, but I wanted to take advantage of that "brain pliability" as much as I could.  Looking back, I realize how much pressure I put on myself.

At Christmas time, I decided we were going to have a big shebang for Wade's fifth birthday.  Five years old is a big deal for any kid.  It's one of those milestone birthdays.  It was an even bigger deal to me because I had put so much emphasis on those early learning years.  So much so that I completely overwhelmed myself and went into my famous shutdown mode.

As the weeks drew closer, Curtis, my parents, my in-laws and my friends were constantly asking me when we were having his party.  We have family out of state, and they needed to know so that they could make travel plans.  Selfishly, I kept procrastinating.  I made the excuse that I had other things that took precedence.  We were in the middle of a disagree IEP meeting at school; it was the end of the school year; Wade's annual IEP meeting was coming up; he had multiple doctor's appointments; the list goes on and on.  Another overwhelming factor for me was that it seemed my worlds--my pockets of friends from various backgrounds--were starting to collide.  I didn't even know where to begin with invitations.  Our house is only so big, and when I started thinking about everyone, it was just too much--t-ball friends, school friends, church friends, friends we've met in "disability world", family, neighborhood, etc.  We are actually very, very blessed to have this "problem", so I'm not complaining.  I just didn't know how to make it easy.  Needless to say, my family never got plane tickets booked, and I never planned for the big event.

Monday morning, the day before Wade's birthday, I called Curtis and asked him to invite his family to dinner the next night and invite the neighbors for cake and ice cream.  We ended up having a very nice, impromptu party.  Wade enjoyed the attention, and I felt a little less worthy of receiving "The Worst Mommy of the Year Award".  I also mustered the energy to take cupcakes to Wade's class that afternoon.  (store bought cupcakes of course!)  The kids loved them, and it always makes my heart so happy to see the kiddos interact with Wade.

I'm a little sad that I allowed the fear of reliving Wade's birth to practically paralyze me.  I really didn't know the full extent of my sadness until I went to bed the night before his birthday.  As soon as my head hit the pillow, the tears began to flow on their own.  My mind was taken back to the days and the moments I was trying so hard to avoid.  Although Wade's birth was the scariest day of my life, it's also a day I wouldn't go back and change.  The memories are sometimes painful and overwhelming, but the wonderful life that has grown from that traumatic event is the best thing that has ever happened to me.  In just five short years Wade has taught me the true meaning of unconditional love.  He's the face of hope, determination, and strength.  He's more than I ever, ever dreamed of.

“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, In Spite of My Disability

Take Me Out to the Ballgame

Wade is having a blast playing t-ball.  We've had games three Saturdays now, including a double header last Saturday.  Those little players were certainly worn out by the time it was all said and done!  We've been using a little trial and error to determine the best and easiest equipment to use while on the field.  The KidWalk gait trainer is my favorite because it allows Wade to be in a standing position.  When the fans are cheering, his little feet just start moving.  He doesn't go anywhere, but you can tell he sure would like to!

 

 

Unfortunately, by the end of the game, Wade is a little tired and cranky from standing in it.  It's a good thing we have options.

 

When Wade gets tired, sitting in his wheelchair does wonders for his mood.  When he's in his wheelchair, he doesn't have to work as hard, and he can relax a little.  The problem with the wheelchair is it is a bit front/top heavy with the small front casters and big rear wheels.  (we're in the process of finding a solution)  There's also a hole on first base line in the grass that you really can't see.  We've had a few near misses and close face plants!  But a few scrapes and bruises are good for the soul, right?

This past Saturday, we decided to try his adaptive stroller in place of his wheelchair when he was tired of the KidWalk.  I think this is a pretty good option because of the stability and ease of pushing.

My dear friend also volunteered her son to be Wade's t-ball buddy.  Elliot graciously agreed:-)  He's so kind and good with Wade.  But he has good practice since he's a wonderful older brother to two siblings.  It means a lot that he's willing to give up his Saturday mornings to help us.

 

Wade also has his fair share of fans.  I've talked about our neighborhood family before, and several neighbors have shown up to cheer Wade from the sidelines.  Of course his uncle and grandparents have been in the stands as well.  We are so amazingly blessed to have such a great support system.  It makes "stepping outside of the box" with Wade a little bit easier.  

 

Last Tuesday, instead of practice, we had to meet for team pictures.  Afterwards, we went to a local pizza place for dinner.  I took a change of clothes for Wade, but when I asked him if he wanted to change, he shook his head no.  When we asked if he wanted to stay in his baseball uniform, he raised his eyebrows and "nodded" his head--his sign for "yes".  I'm glad I listened to him because as we were finishing up, the family of one of Wade's teammates walked in, and the little boy was still dressed in his uniform.  I heard him say, "Mom, I want to go tell Wade hi!"  My heart about leaped out of my chest at the confirmation that Wade was accepted.  This little boy came over and held up his hand to give Wade a high five.  I helped Wade slap his hand as he giggled and grinned.  The little boy went back and said, "Wade gave me a high five!"  And this, my friends, is what it's all about.  Community.  Acceptance.  Friendship.

Play Ball!

It's official.  I'm a "T-ball Mom"!

I put my fears aside, bit the bullet, and signed Wade up to play T-ball for our local youth league.  I signed him up online, and there wasn't any space for comments regarding special accommodations.  So, I anxiously waited as I anticipated what the conversation was going to sound like once I talked to the coach about Wade using a wheelchair.  I was pleasantly surprised at his lack of "surprise" when I told him that Wade has a disability and that he uses a wheelchair and communication device.  I let him know that I had absolutely no expectations except that I wanted Wade to have fun and be around kids his age, in his community.  I explained that I really didn't know what this was going to look like, but we could all figure it out together along the way.  After all, it's *just* T-ball, right? 

As we drove up to the practice field two weeks ago, I nervously wondered what I had gotten us into.  This may be "just T-ball", but these little guys had bat bags and cleats and helmets!  My mom, Curtis and I cautiously walked up to the team while we explained to Wade what was happening.  He just kept shaking his head "no".  I questioned my decision and wondered if this was a mistake.  As we stood there trying to figure out what to do next, Curtis realized he knew one of the dads.  Thank goodness!  It broke the tension a bit, and we spent the next 30 minutes or so practicing hitting the ball off the stand.  That was the easy part.  It didn't take too much improvising to figure out how to make batting work.  We also made note to bring his KidWalk gait trainer the next week so he could stand while batting.

The creative part came when the team started practicing in the field.  The coach would hit a grounder to each kid, and they would stop it and throw it to the assistant coach.  I watched a bit from the sidelines as Curtis stood out in the field with everyone else.  After a little time passed, I went out and we decided that another little boy would take a turn with Wade out in the field.  When the coach hit the ball, Curtis would push Wade and stop the ball with his wheelchair.  Then, the other little boy would get the ball and throw it to the assistant coach.  It worked like a charm!  Wade kept saying, "Again.  Again."  It was so exciting to see him loving being out there.  While he waited his turn, Curtis helped him play catch with another kid.  Curtis would position the ball in Wade's hand, then move his arm in a throwing motion.  The kid would catch it, then throw it back to Wade.  After a few times, Wade was actually gripping the ball by himself, and Curtis was helping him throw by just moving his arm.  So Wade was actually releasing the ball on his own!

At the end of practice, we were able to tell the other parents a little bit about Wade and that we just want to have fun.  We also explained that we welcome any ideas on how to make this work for everyone on the team while also expressing that we're not easily offended by any questions.  Kids and adults are very curious, and I'd rather be open about everything instead of having them wonder what in the world we're doing.

Once we loaded back into the van, I felt like a huge weight had been lifted off my shoulders.  We branched out and participated in a typical four year old activity, and it all worked out.  I was so relieved that Wade was accepted.  But more than that, I was thrilled that Wade had fun and enjoyed playing with the other kids.

Our second practice was last week, and we broke out the KidWalk.  The kids practiced hitting the ball and running the bases.  Wade had a great time, but he has to work on patience and turn taking quite a bit!  He didn't like waiting his turn in the line up.  But how exciting is that?!?!  Every four and five year old has a hard time waiting their turn.  We're learning social skills in a natural environment!  Woohoo!

I was able to capture a little bit of base running on my phone.  Wade's feet aren't really touching the ground, but he's moving them!



Practice number three is tomorrow evening.  Team shirts will be given out.  Wade will then be a certified Saginaw Ranger!