Do you consider yourself pretty accessibly minded? Are you conscience of those in your group and how they can access things? Are you constantly thinking of how your child will get around or perhaps “function” in out of the home environments?

For those of us with special need kiddos, these are our constant worries. We want our children to be able to be among their peers and have the same accessible opportunities. But let’s be honest, that’s a fight in of itself. While us parents can only light so many fires to get access, there are times when we come up empty handed. Those are the times we feel defeated.

THEN there are those moments when all hope is restored and people go out of their way to make it accessible friendly for all. Those are the ones that you hang on tight to and acknowledge our gratefulness for their accessible mindset.

Linden was invited to a classmates birthday party this past week. These two were in the same class last year so they are continuing to build on their friendship. This little girls older sister, Reese, took Linden under her wing last year as his 5th grade mentor. She was always by his side; helping him get around and exuding her carefree humble spirit for all to see. She was and continues to be a blessing in his life.

About two to three weeks prior their mom texts me to see if we thought Linden could do a cave tour if we had as many adults on deck to help with mobility. The last time we went was when he was 2 and much lighter. She explained that if it was too tough of an option for him then she was going to come up with another party plan. Can you believe that?! She was taking into account my son’s needs before making a definitive plan. I can’t even begin to tell you how emotionally struck I was.

My husband was off that day so we were able to make the party work. We were all looking forward to it. Linden was going to get to see his classmate and Reese. Him and Reese are joined at the hip when together. It’s the most precious thing to watch. Linden smiling, no care in the world, being a kid and enjoying every second of it.

The cave tour was tricky but with all the pre-planned support it went without a hitch. All the kids had a blast! Now as for my leg muscles, whoa! Up down up down up down so many stairs. Honestly it was a good sore. I had a wonderful time with wonderful people but most of all because the humbleness of this family to ensure the inclusion of my son warmed my heart.

From the bottom of my family’s heart..thank you Watson family for restoring our faith, giving us the opportunity to make memories with you all, and having an accessible mindset.

 

These questions were posed to me here recently and to be honest I’ve never received them before. I was caught a bit off guard but still happy to answer.

I like to think I’m an open book when it comes to educating others on a variety of things from my family’s journey, Cerebral Palsy, living life with a unique child and even the exhaustion that comes with it all. I embrace peoples curiosity.

You see, as a special needs mom this question is undoubtedly always in the back of our minds. It is always lingering in each moment, of every minute of our lives. The wonder is real people. The how is even more real.

My husband and I plan for Linden’s future through tons of discussed scenarios. It’s hard to visualize where he will be once he is done with high school. It’s hard to see where he will be academically. Of course like every parent you see your child growing up, going to college, getting married, having children, and having a “normal” life. Well we have to be realistic here. Not everyone is on this “so called normal” path. Times have changed and so are the norms. Keeping that in the back of my mind I still have to be aware of a few possible paths Linden could go down.

My first response is…he will be with me forever! I know that can’t be possible. I also know that I prefer him to not be in a group home. I want him to be surrounded by those that love him and see that he is taken care of. Who can that be? The “burden” can’t be on his brother Sawyer. I can only imagine the amount of responsibility Sawyer will secretly carry on his shoulders once he is older anyways. Plus we as parents can’t put that on him either.

Our discussed current plan is that we will have land one day and he will have a fully accessible house on it along with our own home. We wouldn’t be too far from a city so he can have access to transportation and medical care. I want him to be independent and have a working trade. He loves music and movement. He has a very gentle side to him that can help him in a nurturing kind of field. I’m still not sure what career path he is destine for but I do know that my family and I will not stop continuing to teach him independence, life skills and his academics. Regardless of the struggles he has now and will have, he will have a Linden “normal” life and we can’t wait to help shape it with him as he grows older.

Now I know what you are thinking, “That’s not that much of a plan”. You are absolutely right. But honestly how in the world am I to know what his path and journey will look like for him as a 2nd grader. I can only speculate at this moment. I have to keep doing what I’m doing and hope for the best. That’s all I can do!

To end, I do want to say I appreciate this question. It put it out there and not only in my head. Talking about these things aside from my husband, makes it a little easier to digest. I encourage questions from everyone. I encourage you to think about those paths and journeys your little ones will possibility go on. Talk about it! Talk about it for real!

 

Another year has passed…

Why is there still not a cure? Why hasn’t the government put more emphasizes on research for Cerebral Palsy. Why are opportunities limited? Why are we suppressing and shutting down individuals? Why are we ostracizing them? For such an overwhelmingly common disorder, you would think that those living with CP would be able to have the same healthy lives of those of the rest of their community.

Honestly, I’m not bitter that we are so behind in mending the damage done to ones brain and having more open doors. I’m frustrated that it takes awareness days to remind everyone the significance of such a challenging disorder. But as long as I’m living I will stand for CP and spread awareness to all.

Linden reminds me everyday of the jumped hurdles he must go through to find peace and independence. His own frustration with not being heard, understood or taken seriously is showing signs of emotional breaking. As he gets older he is realizing his differences among his peers. Furthermore, his new baby brother will show him of the things he “can’t” do. While I am not one to say my son “can’t” do things but being realistic, there will be things that won’t be the same. Over spring break I was playing on the playground with Linden and a family member was with me. Linden was so excited to be playing and being among other children. He was bouncing all over the place (with support). He wanted to climb the rock wall, monkey bars and stepping bridge. All these things he pointed at, my family said he can’t do that. Notice I didn’t use the quotations. The word can’t was used in a perspective of his independence. Sure he can’t do it alone, he will need help but to say he “can’t” do it would mean there would be no way in the world possible. I challenge that word! CAN’T…think about it…I made sure he did it all. He CAN do the rock wall! He CAN do the monkey bars! He CAN do the stepping bridge.

I tell this story to give different view points on word choices. Some of my favorites are disability versus ability and disability versus eligibility. I’ll hold on those for now (another day, another post). I speak, stand and fight for Cerebral Palsy awareness not only for a cure but for opportunities. Why have limits on things? Why use words that actually have no bearing on ones ability? Why have stipulations on eligibility?

I ask all those reading today to stop and think about those with CP. They are a part of us. They make up our future. They inspire our every being. They teach us…

Cerebral Palsy Awareness Day is Sunday, March 25th. Spread awareness by wearing green!

P.S. Sorry for the long time between posts. Life has been pretty crazy for my family since the summer but we’re back! Stay tuned for the latest on Linden and his new baby brother.

Today is World Cerebral Palsy Day! Today we celebrate the accomplishments of those living with Cerebral Palsy and the medical advances made to treat them. This day is to also bring awareness to the world on Cerebral Palsy.

My family values this day for Linden but also for all those we have met along the way. I encourage all of you to take time today to educate yourself on the causes, challenges, treatments and accomplishments of Cerebral Palsy.

This month holds a memory for me and my family. This month 6 years ago my son was diagnosed with Cerebral Palsy. He was 10-11 months old when we found out the devasting news of our son’s utero stroke that caused brain damage resulting in Cerebral Palsy. For these last 6 years we have been on our “colorful” journey to get answers, find appropriate treatments and equipment and help others with their journey. This road has not be easy but rather long, emotional and down right tough at times. None of this has or will stop us as we continue to fight and support our Champion on his adventures.

Please feel free to share a story you have about yourself, someone you love living with Cerebral Palsy or your experience with it as a medical professional.

Spread the word…World Cerebral Palsy Day today!

Wow these last four weeks have been a whirlwind. Our family had quite the busy summer which is why my blog posts have been MIA. We sold our old house, bought our new one, I went to school at nights and weekends, Linden had camp and we’re expecting a baby brother. As for these last four weeks, I started a whole new career and Linden started school. I am now a proud special education teacher. While it’s extremely rewarding it is quite stressful and Linden has definitely been feeling the effects of mommy being so busy. He’s had some big transitions and his patience and flexibility have shined.

School started a day later for Linden this year as Texas was hit by Hurricane Harvey. The damage and devastation our fellow Texans have endured and continue to leaves our family speechless. We were spared and are extremely grateful. Due to flooding in our area Linden’s school district canceled the first day of school. I teach in a neighboring district and they too canceled school as well as had a delay the next day. This gave me the opportunity to take him to school on his first day.

New friends, new educational team, new school! Whoa! This momma was not prepared for the on slay of emotions when taking him to school. As you know, my husband and I are extreme advocates for Linden. We made sure everything was in place and ready for him to transition to the N-E-W. While we were nervous, he was completely fine. He acclimated extremely well to his new “everything”. In fact, I hear he’s quite the social butterfly. He’s getting to know everyone on campus and has quite the following. What do you expect? He’s a cute kid with an infectious smile that you can’t resist.

His teacher doesn’t have experience with kids like Linden so we are using this as an opportunity to educate her (and others) on what he’s all about, our expectations and his educational legal rights. This is never a smooth process as some can take it as we’re being high maintenance however we are gentle and are making a point to have them understand that we are partners. We need to work together to ensure Linden’s success. So far his teacher is great! She has quite high expectations for him too in some area which has impressed both my husband and I. Check out the cutest kid in 1st grade.

Since school has started, his normal activities have also started back. Besides his million of therapies a week, he’s back on the saddle and in the pool. He’s riding again at A.W.A.R.E. with the wonderful Tracy. He’s been there since he was 18 months old. We’ve been fortunate to continue this each year with financial support from some great organizations. He’s also back at swim lessons. He’s definitely giving his instructor a hard time. He just can’t close his mouth in the pool. This momma on the side lines is losing her mind fearing secondary drowning while he’s having a blast. You see, he can’t stop smiling. I kid you not! He smiles all the time that sometimes it gets him into trouble. This smiling is causing him to forget to close his mouth while in the pool. This is going to be a continued skill we will have to work on.

As Linden gets into the groove of his new routine, he continues to show off his improved and mastery of skills. I’ve included an amazing picture of him STANDING INDEPENDENTLY. Yes I said standing independently. He’s been working on this with Mrs. Emylie for quite some time and he showed us that no matter the surface, he can do it! Check out his face. He’s so proud!

For all those momma’s, daddy’s and caregivers out there, give yourself a pat on the back. Our kids made it through the summer to start school off with a bang. Each year reminds us of how special our little specials are and how grateful we are to have them. They constantly teach us to have a life of patience, kindness, open-mindedness and HOPE.