Things You Might Be Surprised to Know About Me – The Activist Mom

It is that time of year again, Walk season. Every year, just as the summer winds down, days start getting a little shorter, nights get cooler and everyone else is buying new shoes, pencils and backpacks to go back to school, I enter Walk-mode.

Walk-mode has varied for me over the years. I’ve evolved from the passionate, yet sometimes irrational lady that people would cross the street to avoid because I was likely to assault them with a contribution shakedown. In those days, I was pounding the pavement night and day searching out raffle prizes, sponsorships, volunteers to man the food table, food donations, media contacts, and anyone in the business of entertaining children with balloons, face paint or crafts.  I was a walk organizer. In those days, I was also a pursuer of funds, although my focus on this was less intense. Without which, my walk would be a fantastic community building event, also very important in and of itself, but it would not be responsible for putting a drug in a clinical trial or for funding a grant to provide much-needed research.

These days, due to other charitable responsibilities that I’ve assumed over time, I am mostly the former-the pursuer. This often puts me in the awkward position of feeling unpopular and obtrusive.

If you have met me, or someone else like me; the person you’ve exclaimed to be a Super Mom, a go-getter, someone of extraordinary strength and abilities…You may be surprised to know these things about me:

1.    I’m shy at heart. I was born a shy person. I was the quiet kid in school who often didn’t raise her hand or want to be noticed.  Focused attention was painful for me. This all changed when my child was diagnosed. It didn’t happen in a flash of profound awareness. It happened gradually. As my child had more struggles to face, more obstacles to overcome, I became more vocal.  Little by little, I emerged as the person you see doing television news interviews, visiting my Senator’s offices on the Hill or standing on a podium addressing a crowd of people, all the while praying that someone will hear the terror in my voice, will know the sincerity of my message. I may make it look easy, but it is still grueling.

2.    Asking you to give your hard earned money to my cause is agonizing. I know how you labor for your money. I know how tight a family budget can be (insurance helps, but it doesn’t cover a lot of our son’s medical needs). I know you have other requests, from other equally loved friends and family members, whose causes are also important.  Please know that when I ask, I don’t do so lightly. It takes a sizeable amount of humility and a healthy dose of desperation to send you that email or tag your name in a social media post.  I hate doing it.

3.    Asking for your time is even worse. We are all busy. Time is a precious commodity. I worked and raised kids, I know. Requesting that you put aside your own family, your obligations and your billable hours, gives me hives. If I ask you to join our walk team, sign up for an event in your area, or volunteer at one…I will be chugging Benadryl- no joke.

4.    I’m not as calm, composed and pulled together as you may think I am. I am really just a mess with decent organizational skills that I was forced to adopt.  My knees shake when I have to speak in front of people. I practice my spiel in front of the mirror before a big meeting. I am usually juggling priorities and trying to catch my breath just like everyone else, and I get really stressed out, but I work painstakingly at making it look easy so that I can convey my message with confidence.

5.    I would change it all in a heartbeat. Usually, the author of a column such as this would say that despite the hardships, heartache, and strife, she wouldn’t change a thing. I am trying to be exceptionally honest here and I am telling you that I would change everything if given the chance to take this diagnosis out of the equation and give my child a level playing field in life. That isn’t something that is easy for me to admit. You probably think that my cause is my identity and who would I be without it? Honestly, I don’t know who I would be because that wasn’t my journey in this life. Maybe I would still be the shy, disorganized hive-free girl of my youth, maybe not.

It also means that I would not have met the incredible and inspirational people I’ve come to know along this path. These are the people who I now consider as beloved as my own family.  We understand one another better than anyone else in our lives does, including our own parents. We have supported one another in good news and have held hands and wiped each other’s tears with the bad. They are the people who will understand these words more impactfully than anyone else will. Yet, even though changing everything would include eliminating these precious relationships from my life, I would do that. Because doing so would impact my son’s ability to play sports, ride a bicycle, go on dates, be invited to parties, kiss a girl, hang out with friends in the casual way that other teens take for granted, not have a roster of specialists, need regular MRIs, an IEP, medication and the need for me, his Mom, to step far outside that zone of comfort on a regular basis to be the person who feels a need, while in Walk-mode, to make disclosures like this one.

I hope that knowing these things about me makes it a little easier for you to tolerate my seemingly endless capacity for badgering. With any luck, you won’t immediately skim over my social media pleas, won’t cross the street when you see me coming or avoid my emails and calls. Instead, maybe you will respond. Maybe you will be honest with me too and just tell me that it’s not a good time, that you appreciate my discomfort, would like to help me with my cause, but that you aren’t able. Or maybe now you will understand that even making a small donation will speak volumes and will make it all worthwhile for me. That when you respond and you don’t avoid and when you show even an inkling of support, I can get up tomorrow morning, smile at my son and put my big girl panties back on to face another day outside of my comfort zone.

Gradual Change...Place Your Bets

As I contemplated the meaning of what is happening in his life right now, my mind bounced around the last 18 years like the little ball on the Roulette Wheel. Where will it land? Where will he land? But then I realized that he’s not going to “land” anywhere just yet, ever really. We never actually become stationary beings do we? We may stay put for a few rotations of the wheel, but once the spinning starts again, back to bouncing we go. Such is life.

Since I could not allow myself to focus on any one thought about this next chapter in his life, this next spin of the wheel, I chose to go to a concrete source for answers, the Webster’s Dictionary.

graduate

[noun, adjective graj-oo-it, -eyt; verb graj-oo-eyt] 

noun

1.    a person who has received a degree or diploma on completing a course of study, as in a university, college, or school.

2.    a student who holds the bachelor's or the first professional degree and is studying for an advanced degree.

3.    a graduated cylinder, used for measuring.

adjective

4.    of, relating to, or involved in academic study beyond the first orbachelor's degree:

5.    having an academic degree or diploma:

verb (used without object), graduated, graduating.

6.    to receive a degree or diploma on completing a course of study (oftenfollowed by from):

7.    to pass by degrees; change gradually.

The first six versions of the definition were not exactly what I was seeking. Granted, all are accurate; however finite. Number 7 is what I was after with its fluidity. “To pass by degrees; change gradually.” This is what it means to transition from this stage of life, the way it’s been for the past 13+ years, to the next unknown phase. There will be no sudden transformation, no monumental occurrence, which will define the rest of time. If we are fortunate, life happens by degrees; events change gradually. What a relief! Now that is something I can work with. I think he will be comforted in knowing this as well.

The thing about being the parent of a child with atypical needs is that somewhere along the way, you are bound to experience the most intense level of protective you might ever feel. This tends to become evident around the time you first sit across the table from a committee who is there to make decisions about said child’s education. At least it was this way for us. We value education in our family. The fact that our youngest son’s Roulette Wheel spin resulted in him being born with a progressive tumor disorder, which often comes with the added bonus of learning disabilities, was not going to alter this value for this child. In fact, our dedication to setting him up for success was relentless. Okay, his Dad is a Neuropsychologist and his Mom has a Masters degree in Education! Of course, the added credibility, sitting at the table in those meetings, on his behalf was a benefit, but we never did believe in coincidences. We would have done whatever it took to narrow down his odds and give him the least restrictive and most productive environment regardless of our education and training.

We also didn’t create any illusions. We expected that he would work hard and that he would invest himself in his success. Our expectations were the same for all of our kids; apply yourself, take your education seriously, shoot for the moon and never settle for mediocrity, unless that was your personal best. We didn’t reward grades. We rewarded effort, improvement, and attitude. Mostly though, we would never put more stock in their success than they put in themselves. This child was no different. And he demonstrated that year after year. His determination took our expectations straight into outer space!

Our son was already 4 years 11 months when the district firmly denied him a second year of Special Education preschool. After all, they offered a Young Kindergarten class for all students who were not quite ready for Kindergarten, but had been through preschool. This was a one-size-fits-all mentality and it would suffice for all students…despite my insistence that this student was not ready for that level of independence. The same classroom teacher, who had belittled my protests in the placement meeting, took exactly one week of having our student in her class to agree with me. He effectively set the precedent in the district. Never again would a child who was not ready, be forced to attend the Young K program. Score one for us!

When we were trying to make a decision about placement for Kindergarten, we were given two options by our public elementary school: A K-1 self-contained classroom or…somewhere else. Five minutes in this classroom was enough for me to know that the only option was not an option. We had to dig deep, but we were able to find a private school setting with low student/teacher ratios and combined age levels, which ended up being a perfect fit. From there (when the school closed down 2 years later as a result of poor management) it was back to our local public school and a 2/3 Special Ed classroom; a 12/1/1 (12 students, one Special Education teacher, one aide). It wasn’t ideal, but we adored the teacher and she adored our son. He started mimicking some behaviors that weren’t his own and wasn’t really progressing the way we had hoped. Once you are slotted into that setting, they push you through in that setting and he had to change schools in 4^th grade to be in the “appropriate” classroom. At this point in time, our child also knew that he was misplaced and he vocalized his objections. We took a giant leap for 5^th grade and spun that oppressive wheel once again to find out if he could succeed in a co-taught class with 24 students and 2 teachers, 1/3 of which were special needs.

This was the point in time that I can truthfully say that he started to shine. He met another boy, so much like himself, and they bonded. He had his first honest to goodness, no holds barred, friend and we started to see him gain confidence, develop a sense of humor and become radiant. This was the year he emerged from his cocoon and he became transformed. Who knew that taking that chance, challenging him to a new standard, would give him wings?

5th Grade Buddies

Friends for life

He stayed in co-taught classes through the end of twelfth grade with more intense subject matter and higher level learning and not once did we think we’d pushed him too hard. Quite the contrary, we encouraged him to take risks and made certain that he had a safety net in place at all times, even though he didn’t always know it was there. The boy who we were told might never accomplish much of anything, the one who we were not supposed to expect a lot from, is now going to graduate High School with honors and has enrolled in Community College for the fall. He thinks he wants to study animal science. He also obtained a driver’s license this spring, voted in his first Presidential Primary, started a part-time job and opened a checking account. Shame on those who tried to place limits on the prospects of this child!

The ball is bouncing and the wheel is spinning and it’s going to land just where it is supposed to land and I cannot control the outcome. I influenced what I could along the way, I encouraged, I supported, I informed, I taught, I applauded, I ached and I prayed in order to increase his chances of a win, and that was the extent of my abilities. Now it’s up to him. Now it’s his turn to take the reins and place his bets and I’m reluctant to let go; to walk away from the table and relinquish my role. I know that I don’t have any say in the matter. I brought him into this life and I nurtured him along but it is his life to live and to make mistakes in. It’s up to him to learn from his mistakes and to push on and to celebrate his victories.

But when your child began at a disadvantage and when he has labored every step of the way; had a new challenge at each intersection and didn’t get to be one of the typical kids, letting go is nearly impossible. I hope he knows how difficult this time will be for me so he can cut me some slack when maybe I hover or helicopter, or whatever I do that doesn’t help him to feel independent. I hope he knows that I can’t stand to see him struggle with mundane tasks because he has already had so many significant battles in his life. He has to know this because I couldn’t bear to be the one who held him back in the end, after thwarting the attempts of anyone who tried it along the way. He will know because he knows how much I love him and the one thing about me I am most confident that he understands, is that I will fight for him. I will always fight for him. Go ahead and spin wheel of fortune, this boy is ready for your next challenge!

 “Fear is going to be a player in your life, but you get to decide how much. You can spend your whole life imagining ghosts, worrying about your pathway to the future, but all there will ever be is what’s happening here, and the decisions we make in this moment, which are based in either love or fear.So many of us choose our path out of fear disguised as practicality. What we really want seems impossibly out of reach and ridiculous to expect, so we never dare to ask the universe for it.”
~Jim Carrey, Commencement speech

Fighting NF on Capitol Hill

On Friday, February 24, 2016, I was pleased to be a Guest Blogger for Children's Tumor Foundation on the topic of NF Advocacy!

If you've ever wondered what is involved in being a political advocate for a cause, this blog post may just answer your questions. 

"There is something very powerful in knowing that you have a voice with important issues and that you can be heard. For me, NF Advocacy has become not only my right, but my responsibility as a mother..."