Let's go in yonder, please.

My adult children were home for a bit over the recent holiday season. Is it cliche to say that there is simply nothing better? Conversations were rich,  laughter was frequent, and my heart just felt so at peace to know all those precious people were sleeping under my roof each night. (But less I paint too perfect a picture, there were also constant messes in the kitchen, a ton of laundry, and late late nights that left me with quite the circles under my eyes!)

Perhaps one of my favorite parts of parenting young adults is hearing their memories of growing up in our home. Listening to them talk about our family traditions never ceases to bring a smile -- and sometimes a laugh as some traditions were never intended to be such.

When the triplets were young, we had a steady routine. They would get up, we would have breakfast together, and then go back to their room to get dressed for the day. Apparently, I would daily say something to the effect of "Ok, let's go in yonder and I will get your shoes on." Or "Go in yonder and watch "Little Bear" while I get my clothes on real quick." You get the idea. So when we moved to Phoenix one of the first things they wanted to know was which room was "yonder". I didn't understand. "MOM! Which room is yonder" they implored me. It took several minutes for me to realize what in the world they meant.

Hence, most people have a family room. The Shraders have a yonder.

Often, as my crew remember, I learn how some event, season, circumstance affected them. It can hurt to hear they were hurt by something that maybe we missed recognizing completely. And if it was due to something we, as parents, said or did, well I am always devastated by those memories. "I'm sorry" never seems quite strong enough.

But sometimes, the memories have nothing to do with me, or our home, and seem almost to come out as my amazing children process them. One such discussion felt like that this season. We were discussing school and some legislation that I have been working on here in Delaware regarding education issues. Mason began to recount being alone in the special education room and how horrible that always felt. I was shocked. Truly. You were not ever in the special education room, I said. No. He told me. He was. If his teacher didn't want him completing assignments on his computer when the other students were writing their's, she sent him there. What? Why didn't I know about this?

And as we began to discuss and dig into the circumstances, and I continually reminded him that he was supposed to be full inclusion. He said, yea, I think there is a lot more segregation happening than parents are aware.

For the love.

I can't quite wrap my mind around it. And honestly, I feel very sad even trying to. I can sit here and type about what I thought was happening, the safeguards we had in place, and the ridiculousness of separating this child from his peers. But it won't accomplish anything today. Rather, we as a family will keep working to make it better for those following in our path.

I will say, Mason is working on his PhD at Brown University in BioArchaeology today. He is teaching Brown undergrads and frankly in my perhaps not objective opinion, changing the world by demonstrating all that CAN be accomplished with cerebral palsy. I am ridiculously proud.

 

I had the privilege this summer to be interviewed for a podcast in Australia. I am linking to that ResearchWorks Podcast here because we discuss so much in that hour together. And yet, there is so much work to be done. So many attitudes to change. So many people to educate.

We must be ever vigilant. Motor skills alone should not define our children.

A magic lamp full of memories

We just returned from a fantastic two weeks of all six of us together for the first time in a long time. It was amazing, and hard, and fun, and stressful, and so so good. Really just so so good. In full disclosure: The airline forgot to load the wheelchair onto our return plane. And then when we finally had the manual chair brought from baggage claim and loaded with Benjamin and made it to our van, it would not start. But such are the perils of traveling. Car batteries die. And sadly, just as frequently, airlines mishandle wheelchairs. There is no excuse for the latter. But tonight I am choosing to file the hard, stressful yuck away and focus on the really really good. 

So often these days, I sit down to type and realize with grown adult children, I am no longer the writer of their stories. Oh they still let me share, but more often than not, I am on the sidelines at best (cheering of course), and a casual by-stander at worst (still cheering though.).

But I am still -- and hope I will forever have the privilege to be -- the keeper of their childhood stories. And so as I sort through the hundreds of photos, I am struck by this one that makes me smile and remember:

The triplets were 4 the first time we had breakfast at Cinderella's Castle in Walt Disney World. When Aladdin came to our table, he immediately sat down in the floor with Benjamin who had watched that movie on a continuous loop for the longest time. When Benjamin told Aladdin he hoped one day to have a magic lamp, Aladdin told him perhaps one would appear during the trip. Wade and I fairly panicked. Benjamin never forgot a thing....we knew he would be waiting for this lamp to appear the rest of our trip. We were not sure what to do.

We didn't need to worry. We walked in to our room that very afternoon to a lamp waiting for Benjamin, and Genie dolls for Mason and Claire! And scribbled on a little notepad (with a Genie on it no less) was a note asking us to sit in a particular location for the next day's parade. 

We had no idea what to expect, but we rearranged our day to include being in that spot for that parade. My little trio were so excited when the parade started. Wade with his video camera was taking it all in. I was -- naturally -- snapping a million photos as I tend to do of parades. Then the strangest thing started happening. Cast members accompanying floats started stopping to speak to the triplets telling them they must be Aladdin's friends! They had heard all about them. It happened several times and the kids were just delighted.

Then all of a sudden, Aladdin and his float were upon us. He was waving and we were all five waving back. The cast members accompanying that float were swordsmen. They stopped and spoke to Benjamin and Mason and Claire and then looked at me and very solemnly informed me that Aladdin would like for us to meet him at Town Hall following the parade. 

We assumed there would be a meet and greet with Aladdin following the parade and so we made our way to Town Hall on Main St. but could find no trace of Aladdin. We waited for several minutes before I went inside. I was pretty meek as I explained how this might sound crazy, but Aladdin had asked us to meet him there. I was quickly assured that I wasn't crazy and we were escorted through the door and to a waiting Aladdin -- who legitimately just wanted Benjamin, Mason, and Claire to be able to have photos with him in his Prince Ali costume! 

That lamp did not leave Benjamin's hand for years. He loved the shine right off and it still has a featured space on his bookcase.

But that was far from the only gift Aladdin gave our family that day. With his kindness, with his going-the-extra-mile attention to our three, he taught two young parents who were unsure what the future would hold for their kids, that no matter what there would be kindness. He taught us that no matter what their abilities -- or inabilities -- our crew would have good people come alongside them. He taught us that there would be those willing to go over and beyond to befriend them.

So as soon as we heard about the photo opportunity afforded us before the Aladdin show on our cruise,  I knew we had to be there! Such precious memories of a young man who went out of his way to give a little magic to a little boy -- and a lot of hope to his parents -- once upon a time!!

There can be crying in softball...

I am fairly certain I did a lot of oversharing yesterday after my baby hit her first over-the-fence home run in USSSA softball. And man, I felt guilty all night.

But y'all, (And I know I say thisi all the time!) watching her pitch, or bat, or just play anywhere on that field, is emotional for me. I start thinking how amazing it is that her body actually does what she wants it to do and before I know it I am a crying, blubbering mess.

It wasn't as if I just really wanted to be a Sport parent. No. And as a matter of fact, I remember when my boys played on an accessible soccer team in 2nd grade and we once had a game that was delayed due to a non-accessible game running long on the field. Parents started yelling at their children (and I mean, CHILDREN....not teenagers!) in the harshest tones. "Can you not see the ball? Get it!" And that was mild compared to when they started yelling for their little Bobby to "take number x out". It was insane.

So I didn't dream of that. I frankly was grateful that I assumed we would never be on the sidelines of such.

And then came Cate. She has loved playing sports since SHE begged US to put her in "kicky-ball" (soccer) when she was only 4.

And she couldn't wait to play softball as soon as she was old enough. ( I am relieved to say she has only played on teams with supportive cheering parents on the sidelines!)

But more than that -- these photos showed up in my memories the last two days and as soon as I saw them my stomach turned upside down.

Most summers have not been spent on the softball or soccer fields. Most of our summers have surgeries, hospital stays, rehabs. And don't get me wrong, we have fun even in the midst of that but not hit-the-ball-over-the-fence-and-run-the-bases fun.

So I will keep celebrating my Red. I am going to probably keep oversharing. And I am certain I will keep blubbering.

And I will trust that my beloved friends who have stood with me in the hard surgical seasons will understand as I celebrate and celebrate with me. And I will be forever grateful.

CP Awareness: What It Means to Be the Mama

Yesterday the boys and I were interviewed by a new friend -- Emmanuel Jenkins -- for his podcast for Cerebral Palsy awareness. A family man juggling the needs of his home while preparing for the interview, Emmanuel is smart, engaging, driven. He also happens to have CP. 

As I listened to my sons answer Emmanuel's questions, I was as always proud of them. But more than that, I was struck by their story. Yes, yes, I know their answers by heart -- Mason has always said my mouth moves as they tell their stories because I anticipate where they are going with them. But yesterday, I enjoyed hearing them speak to the way they have chosen to put their CP to work rather than working to overcome their CP.

Mason talking about disability in ancient cultures and the way he is building his future around studying this past, is fascinating. And Benjamin discussing political advocacy and ensuring we move forward in the care of a population that is often not on the front of people's minds.

Trying to get in the frame for our interview!

Today is CP Awareness Day -- officially. And so over coffee this morning, I have been thinking about our family in general, the boys in particular. I have been thinking about all that Benjamin and Mason said yesterday. I have been thinking about the effect of CP on Claire and Cate, and the away it shaped the scope of Wade's entire medical practice and career.

And I have been thinking about the ways CP has changed me. Because this is after all, my story.  My amazing wonderful incredibly world-changing triplets are telling their own story these days. They are captivating to listen to and while I will spend my life standing by to assist, they are fighting their own battles and knocking down their own road blocks. I am beaming with pride.

So I can not speak to what it feels like to have CP. But, my boys have no memory of how it felt when the doctor diagnosed them. I however, remember every detail, down to the way the room smelled. My boys don't remember those early days of physical therapy. I however, remember. I remember wanting desperately for the therapists to believe in them. I wanted the therapists to love them. I remember building relationship after relationship with once complete strangers because entrusting my little bitty babies to them, meant bringing them in to our family and loving them. 

Benjamin and Mason were living their lives. They -- and their sister Claire -- were adorable and sweet and loving and so so funny. And for me, I wanted the world to see all of that. Not their CP. And so I took photos and told their stories and made videos to send the grandparents. And then told their stories again.

And as they grew, I helped them explore their passions. Because I knew they had talents and dreams and passions that were not limited by their CP. Benjamin and I took music class and theater class. We played drums together and even figured out how to "act like a pizza" within the limits of his little body. And we played and had fun and celebrated childhood!

As hard as Mason worked to move at physical therapy, he worked equally hard at gymnastics, Tai Kwon Do and archery. We explored and tried new ways for him to soar. And when one didn't feed his passions, we tried another. Because his need to compete was not bound to his cerebral palsy.

And so, as I sit here this morning, I am tempted to label this post as the evolution of a mother. And for certain, I have been changed by the CP diagnosis. I have been changed by Benjamin, Mason, Claire and of course little Red (Cate).

But the actual truth is that as vividly as I remember the smell of the room the day the doctor told us the boys have CP, I also remember the thing that kept hammering in my head: YOUR JOB HAS NOT CHANGED.

I did not need to evolve to be the mother of Benjamin, Mason, Claire, and Cate. I did not need to evolve to parent two children with cerebral palsy. Being Benjamin and Mason's mom required me to do exactly what I had known I had to do the minute I realized I was expecting: my job is to help them reach their full potential. My job is to expose them to options and opportunities. My job is to cheer them to their personal best. My job is to remove as many obstacles as I can to make the opportunities available. And while CP presented -- and continues to present -- unique road blocks, the ultimate job is not unique to mothers of children with CP.

I believe in my boys. I believe in my girls. I will always and forever be their number one fan. And I will always fight to be on the front row of their cheering sections.

And if, these amazing grown men -- or women -- need me, I can still grab a battering ram and am more than willing to knock down some walls.

Scissors, playgrounds, and a Mama Bear finding her roar.

**March is Cerebral Palsy Awareness Month. I plan to write and share and probably overshare here this month in an attempt to educate, and even celebrate the ways my family is unique. **

If you have been with me here for more than a minute, you probably know that I tend to be a glass half-full sort of girl. Often during those preschool years, I was just grateful for the fact that I got to have little babies in my arms longer than normal because of their early birth. I fully embraced that time. And yet....before I could blink -- or shower even -- my three were ready for preschool.

The admission meeting for our little preferred school -- Buttonwood -- was enlightening:

Teacher: "Can Claire dress herself?"

Me: "No....but is that a thing she should be able to do at three? Because that would be awesome!"

Teacher: "Can the triplets use scissors?"

Me: "How would I know? I have three-year-old triplets, there are NO scissors in our house!"

You get the idea.

Preschool was just two mornings a week. For two hours. I was a nervous wreck and frankly I missed their little faces. Benjamin, Mason, and Claire adored it!

And then it was time to visit kindergartens and think about their formal education.

It didn't start smoothly. I loaded my babies and we went to visit the private school in our community where most of my friends sent their children. I have to fight tears just remembering that headmaster sitting across his desk from the four of us. 

"Mrs. Shrader, this is what we can do," he began. "We'll enroll your children on a three-month probationary period. If in three months it proves too hard on my teachers, we will have to ask you to find somewhere else for them to attend school."

Looking back on the moment, I know my Mama Bear voice was not as firm as it might be today, I was not quite five years into it. But even so, I cleared my throat and looked that man in the eyes as I said, "Really? And you think starting kindergarten on PROBATION is the best way to set them up for success? I cannot even imagine the stress that would place on them and on us as a family. No thank you."

We visited other schools before landing on the local public elementary school. The principal was warm and welcoming and the teachers in no way made us feel burdensome.

And yet, three days into their kindergarten year, Mason burst in to tears when I asked him about his day:

"I can't play with my friends. They won't let me go down to the playground."

I had no idea what was going on but the Mama Bear inside me was growing with each moment. I looked at my sweet boy and promised him I would fix it. I was in the principal's office the next morning as soon as I dropped them at school. 

"The playground is old and down in a ravine," she told me. "It would be dangerous for Mason to even get to it."

She told me they had petitioned for a new playground to be built behind the school on level ground but it wasn't high on the district's priorities. I asked if I could start a fund-raising campaign for an accessible playground, so desperate was I to make this work for my babies (I had said I would fix it after all.). Our principal said she would support it 100 percent.

I started by calling the school district. Principal was correct. They had it on their list to improve the playground but it might be ten years before that happened.

I contacted an accessible playground maker. He brought me catalogs and showed me the wide-range of access he could offer the students at our school. It was amazing.

And we would need a minimum of $40,000.  $70,000 would be better.

Undaunted, I began by assembling a team. Two moms in the triplets' classroom got behind me immediately. We started holding planning meetings and quickly learned we needed to be under the PTA's umbrella for this to work. It never occurred to me that might be a problem.

It should have. One mom legitimately stood up and said she was fine with the current playground. There was no need for the new one. I wasn't prepared to argue. I assumed this was a no-brainer -- all our children playing together seemed a win-win for all of us. I assured her, and the PTA, that I would do the work with my committee. We wouldn't ask for them to do anything. Further, I assured them we would not take funds from any other project they already had earmarked for the year. Hindsight has not helped me reconstruct this situation at all. All these years later, I still do not understand the way this one mother fought the playground -- and rallied her friends to do the same. I was a newcomer and could easily have lost this battle. But the teachers at our little elementary school were fierce. They had heard the rumblings far earlier than I. They showed up to that PTA en masse and voted 100% in favor of moving forward with raising funds for the accessible playground.

So my little committee went to work. We wrote and sent hundreds of letters. We wrote and sent press releases. We reached out to every news outlet in the Rochester area.  We held a penny drive at school. The principal gave prizes for the classroom who raised the most. One day my dear friend brought her son to our home. Joshua went to a different elementary school. He wouldn't get the benefit of the playground. But he knew his friends were trying to build one. He took his piggy bank to his mom and asked her to give it to me. I could not hold back my tears.

After one news program aired a piece on the playground I received a call from an older lady in the community. She planned to write me a check but first she needed me to assure her that only those "two cute little boys" she saw on the news would get to play on the playground (she was referring to my boys). Those other kids could play anywhere she said. I tried to explain inclusion. She didn't understand but her heart was in the right place.

At the end of the school year, we had raised $17,000. We were grossly short. I was sad -- I had wanted the playground built and ready when first grade began -- but I was not undeterred. It would just take longer.

In July, I received a phone call from the playground company. They had assembled an accessible playground for their catalog photos. They were willing to disassemble and rebuild it at our school for a fraction of the cost if we were interested. And by fraction, I mean they were willing to do it for just a few thousand more than we had collected. I immediately called the school district and they chipped in the extra dollars. 

We started first grade with a playground that allowed my boys to be included with their friends. We started first grade with a way to participate in the most important aspect of elementary school -- RECESS!

I am just going to be totally honest here: I felt pretty confident we could bulldoze our way over any and every obstacle. Mama Bear was feeling a bit smug.

(You know this isn't over, right?! Come back later this week!)

The tour guides.

**March is Cerebral Palsy Awareness Month. I plan to write and share and probably overshare here this month in an attempt to educate, and even celebrate the ways my family is unique. **

When I typed about my boys' diagnosis last week, I described things being thrown at you as you try and get your bearings after the spinning ride. We are 23 years in to our Cerebral Palsy journey and periodically, things still get hurled at my head that leave me searching for an English to CP language dictionary.

Early it was fast and furious: The boys would need OT, PT, Early intervention, AFOs, maybe hinged AFOs, IEPS, maybe they would require a CT scan to confirm diagnosis, ultimately we would have to wait to know where they would fall on the GMFCS.

I had no idea what any of this meant. I had majored in communication in college and was a writer by vocation. I thought I knew words. I thought I knew how to put words together. But in this world of cerebral palsy, the rules were apparently different. And though my husband was a medical student and the smartest man I knew, we were navigating a whole new dictionary of terms, words, goals for our children.

We began PT and OT -- I learned quickly that was physical and occupational therapies. Our PTs were energetic and immediately seemed to love my boys. I worked hard to determine my role at therapy. The hospital-based therapy was bright lights, sterile walls and a bit overwhelming for my little babies. But as Megan and LouAnn got to know the boys they learned how to make the environment calming for them. Megan always had the Elmo toys handy. Benjamin loved to reach and stretch toward his favorite muppet. And LouAnn, well she quickly learned that Mason loved an audience. What he struggled with in the PT gym, he did with ease in the hospital hallways where the probability of people clapping and cheering him on existed.

Our occupational therapist's clinic was outside the hospital. Her office a bit more warm, less-sterile-appearing. Or maybe it was just Susan. Susan had delivered her first baby the day the triplets were born. We shared a doctor. She recalled the moment every one began scurrying around because "the triplets are coming!" And so we immediately bonded. When I had watched her work with the boys for several sessions, my impatience got the better of me. Both she and the PTs worked so much on stretching, reaching but when were they going to work on sitting, crawling, walking?

Everyone kept telling me the boys had developmental delays. I thought therapy was to help them catch up. I mean, according to every dictionary I have ever read, delay means late, but delay doesn't mean never. Shouldn't we be working on those big things so that they could eventually catch up? Why then was no one doing that? I desperately wanted to be working on the big stuff. I desperately wanted the boys to catch up.

And though I was petrified of her answer, I finally asked Susan my question. I had tears that I could not control running down my face, as I quietly asked why we were constantly working on reaching for beads but never working on sitting, crawling, walking? She stopped and looked me in the eyes, tears running down her own face, as she said, "Carol, they have to learn to do this stuff first. We have to work on their strength."

Then she turned and got right back to work. 

It wasn't the last of my questions during our time working together. It wasn't the last of the tears. Susan walked me through those first two years of my boys' diagnosis. She taught me what it meant to have CP, she helped me understand the myriad of terms being thrown at me, and perhaps most importantly, she constantly reminded me to celebrate my trio. 

When we visited Minnesota to prepare for our move, the triplets played in the ball pit at a friend's house. Their not-quite-two-year-old brains decided that moving to Minnesota meant they would have a ball pit and they told everyone who would listen. 

And so when Susan showed up at their second birthday party, she had a ball pit in tow. She told me she couldn't stand the thought of them moving and not having a ball pit waiting on them. (You can read more about this amazing woman here.)

So while the diagnosis of cerebral palsy for my boys put me on a course I was wholly unfamiliar with, and hit me in the head with terms I had never before known, it also came with some amazing tour guides. In our journey, we have met therapists, doctors, surgeons, nurses, teachers, paraprofessionals, and personal care attendants, all of whom taught us something about our children, something about ourselves.

I can never thank them enough for helping me learn to catch all the things hurled our way. And then some.

Take a Spin.

**March is Cerebral Palsy Awareness Month. I plan to write and share and probably overshare here this month in an attempt to educate, and even celebrate the ways my family is unique. **

Close your eyes and imagine you just stepped off Alice's Teacup ride in Walt Disney World. Your feet are unsteady. You head is spinning fairly substantially and before you can get your feet firmly planted under you, someone starts throwing hard things at your head. Really really hard things. And if that were not enough, simultaneously someone is reading Alice in Wonderland really loudly over all of this, and periodically asking you if you understand.

You are close to understanding how it feels to have your child -- or for us children -- diagnosed with a long-term disability. (You can read our diagnosis story here.) 

But here's the thing, even when my head was swimming, even when my emotions were rolling down my face,  I knew two things to be utterly and completely true: My boys were exactly the same amazing, lovable, adorable, brilliant little boys after the diagnosis, that they had been before it. The exact same. And the other thing I knew: my job had not changed in the least. I was still to love them, support them, encourage them and fight for them and with them so that they could reach their dreams, so that they could reach their goals, so that they could be everything I knew they could be.

Cerebral Palsy did not then and does not now make them less than. And it didn't make their dreams less than either.

And as their mother, I knew I had to firmly plant my feet. I needed to shake off the whirlwind of emotions. I needed to keep doing exactly what I was doing the day before -- loving them, taking care of them, keeping them healthy. I knew they had already changed me for the better.

I would soon learn just how much.