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.

A Dad's Perspective

For the June issue of our local Arc Chapter's monthly newsletter--The Arc of NE Tarrant County--Curtis was asked to write an article. I was going to share it on Father's Day and forgot! Then, I was going to share it last Saturday in honor of our six year wedding anniversary to show what an awesome dad he is. Believe it or not, I forgot again:-) So, here it is. I hope you enjoy.

Through a Father’s Eyes…

As we celebrate Wade’s birthday, I reflect on the last four years. As I look back on the rollercoaster of events and emotions, I find myself thinking of the lessons I have learned. At the beginning of Wade’s life, I was full of motivation and optimism. The first year was the hardest for Jenny and the easiest for me. I was focused on supporting her and not so much on the road ahead of us. I think it was a comfortable state of denial; it was definitely easier for me to plow though it than dealing with where we were. Then the reality came over me like a storm. I can’t tell you what caused it, but all of a sudden I woke up angry and frustrated with the cards that God had dealt me. I found myself turning away from God and Wade. I have always been a guy that could make something out of nothing, but this time I ran out of options and had nowhere to turn. I wasn’t as interested in his life, and I lost all motivation to press on. I wanted out.

One night I was watching Extreme Home Makeover. There was the typical family that the people of ABC were helping out, but this time they also focused on the people of the community that had stepped up to help the family. There was a gentleman they interviewed who owned a coffee shop in the local town who only hired people with disabilities. He also had cerebral palsy, and he wanted to show the rest of the world that people with disabilities can contribute to society. I remember watching this show and crying my eyes out because I was full of guilt. Here was a man who didn’t use his disability as a crutch in life. He used it more of a motivation tool to help others and himself spread awareness and hope to encourage people to overlook the disability and actually see what people CAN do and not so much what they CAN’T. I realized that what was holding Wade back were the voices in my head telling me that he would never do the things that a typical child could. I put an emotional fence around him to protect us from his disability. If I kept telling myself that he would never be able to do certain things, it wouldn’t hurt as much when we didn’t get to do them, and therefore we wouldn’t even have to try. I failed Wade by not letting him tell me what he could and couldn’t do. I was the one in his way. I was the one holding him back. I was the one trying to protect him instead of allowing him to succeed in life through his trials. We all fail at things. There will always be things in life that he is not going to be the best at. There will always be things that he may never be able to do. But standing in his way is not doing anything but holding him back.

The main thing I learned in this adventure is to get out of his way! Get behind him instead of in front of him. Push him to be the best at whatever it is that he wants to do in life. This isn’t denial anymore, or even over optimism. It’s more of a realization of the fact that there are going to be obstacles. But instead of failing before he tries, we’re going to learn how to ride this roller coaster of life together. Wade will be successful in life, AS LONG AS I STAY OUT OF HIS WAY.

Summer Fun at VLM

Today we ventured out and visited The Virginia Living Museum. Wade had such an amazing time looking at the fish as they swam up to the glass, right next to his face! 

After that, we were able to get up close and personal with some crabs, starfish, and horse shoe crabs.  I was quite impressed that Wade attempted to touch everything without pulling back.  He tends to have some pretty big sensory issues with certain textures. 

I think our very favorite part of the day--well, my favorite part anyway--was the butterfly exhibit.  Wade was so excited and interested in seeing these beautiful, fluttering insects all around him.  We even managed to get a few to land on him. 

Wade even tried to touch the butterfly himself.  His first modality when trying to touch something is his head.  So, he bent his head down to touch it.  It almost looks as if he's trying to kiss it!

Besides Curtis getting reprimanded for taking a flash picture in the planetarium and fussed at for trying to pick up one of the "not so friendly" butterflies, we had a pretty fantastic afternoon!  Wade even got to hang out in a turtle shell and fly through the air like a butterfly.  He had so much fun that he requested many times, "Do again."  Of course others may not understand what he's saying because he leaves off the initial sounds, but we know what he means:-)

 

I can't wait to see what other adventures are ahead of us while visiting Nonnie and Grandpa.  I'm sure whatever we do, it will be full of smiles and laughter.  One thing's for sure.  The weather here is so much more bearable than the Texas heat we left! 

Stronger Than I Ever Imagined

This article was posted on a Facebook group I'm a part of.  It brought tears to my eyes.  I wanted to pass it on to all of my mommy friends who have kids with disabilities.  YOU are amazing!

Some Mothers Get Babies With Something More

Lori Borgman | Monday, May 12, 2002

My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn't matter whether it's a boy or a girl. She just wants it to have ten fingers and ten toes. Of course, that's what she says. That's what mothers have always said. Mothers lie.

Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin.

Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.

Every mother wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two).

Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class.

Call it greed if you want, but we mothers want what we want. Some mothers get babies with something more.

Some mothers get babies with conditions they can't pronounce, a spine that didn't fuse, a missing chromosome or a palette that didn't close.

Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn't see the kick ball coming and it knocked the wind clean out of you.

Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can't be possible! That doesn't run in our family. Can this really be happening in our lifetime? I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It's not a lust thing; it's a wondrous thing. The athletes appear as specimens without flaw - rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler.

As I've told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there's no such thing as a perfect body.

Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery. The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it. Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day.

How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists hammering in your ear.

I wonder how you endure the clichés and the platitudes, well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike.

I even wonder how you endure schmaltzy pieces like this one -- saluting you, painting you as hero and saint, when you know you're ordinary. You snap, you bark, you bite. You didn't volunteer for this. You didn't jump up and down in the motherhood line yelling, "Choose me, God! Choose me! I've got what it takes." You're a woman who doesn't have time to step back and put things in perspective, so, please, let me do it for you.

From where I sit, you're way ahead of the pack. You've developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule.

You can be warm and tender one minute, and when circumstances require intense and aggressive the next. You are the mother, advocate and protector of a child with a disability.

You're a neighbor, a friend, a stranger I pass at the mall. You're the woman I sit next to at church, my cousin and my sister-in-law.

You're a woman who wanted ten fingers and ten toes, and got something more. You're a wonder.

Dumb Dog

Our church started a new series today, called Messy, and today's service was on grace. The pastor was telling a story about his "dumb dog", ironically named Sparky. Sparky was a rescue dog, a schnoodle--schnauzer/poodle mix--if I remember correctly. Before taking Sparky to his new home, they were told that Sparky had some awkward behaviors--maybe he had been dropped on his head at some point--but otherwise, they said, he was really cute and adorable. Of course those behaviors quickly loose their "cuteness" when you're having to care for the dog more than anticipated.

It seems that Sparky needs help doing practically everything! He's so dumb that you can sit him up on a chair, and he'll just stay there perfectly content, as he can't get down. Better yet, he doesn't seem to have the desire to get down. As for house training, they don't think that's ever going to happen. The dog can't seem to grasp the concept. In order to get to the back yard, Sparky has to be nudged down the step off the porch because he can't physically maneuver the step on his own. He's that dumb! Then when he's called to come inside, he'll just sit there and look at you. Now, that's just stupid! Honestly, it was a pretty good analogy of our relationship with Jesus and those He's trying to draw closer to Him. Sometimes we just sit there and stare at Him as He waits for us. But as good as the analogy was, it was also a reminder of how different my life is today than it was four years ago.

I LOVE our pastor and our church. He's an easy going guy who tells it like it is. He's down to earth and a self-proclaimed sinner. I often relate to most of his stories and laugh at the majority of them. They're "real". I laughed this morning about his "dumb dog" because on the surface, it was funny. But as I sat there laughing, I couldn't help but think that Sparky and Wade are a lot alike. In fact, when he was talking about the things he has to do for his "dumb dog", I pictured me doing the same for Wade. My laughter became a little more subdued as it started to hide the hurt in my heart. It was just another reality check that we, as a society, find humor in people and things being dumb or stupid or...retarded. It was painful.

On our way to lunch, I expressed this to Curtis. He said he had looked at me out of the corner of his eye and wondered why I was laughing. I had noticed that he wasn't laughing. I had questioned to myself if he was having the same thoughts or if he just wasn't paying attention. Obviously it hurt him as well. I then looked over at another couple who have a child with a disability, and I wondered what they were thinking. Did they feel the pain I was feeling? Were they envisioning their child instead of Sparky?

There was no ill will behind the story of Sparky. Feelings were not meant to be hurt. It was just such a strong reminder that our experiences shape us and make us who we are. We respond to life based on what we've gone through and the lessons we've learned. Four years ago, I wouldn't have thought twice about this story. But now I have a son who is one day going to be laughed at and made fun of because he has a disability. "Dumb" jokes just aren't as funny as they used to be.

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.