Big Steps, Small Victories

From the moment a baby is born, we begin the preparations that will gradually, over the following 18-21 years, if we did our job well, lead to adult independence. When the baby is diagnosed with a neurologic genetic disorder and the list of possible manifestations includes some pretty scary stuff, the normal course of events naturally gets cloudy.  For many years, I did not know that my son would ever become an independent adult. Today, I waved from the front porch as he nervously drove down the driveway toward his first rented space away from home, a very big step. When he was out of view, I went inside and melted into a puddle of tears and uncertainty on the foyer floor.

He was just 6 months old when the neurologist confirmed the neurofibromatosis diagnosis. I was told to take my baby home and love him and enjoy him. He said, "Don't search it on the internet. You won't like what you see." There were no treatments and there was certainly no cure, so the only option was to watch for changes and wait for symptoms.  He even sent me a packet of information with a note taped to the front page, which let me know that there would be no purpose in actually reading any of it because it wouldn't change the outcomes, it would only cause me more worry.  He didn't tell me what to watch for and he didn't mention how long we would have to wait. I actually did not read the packet of information, I tucked it into a drawer and left it there, but I found a pamphlet inside from the National Neurofibromatosis Foundation (NNFF, now Children's Tumor Foundation) so I visited their website and found our community.

The first 3 years of his life were a blur of missed milestones, evaluations and therapists. NF not only causes tumors, deformities, chronic pain, deafness, blindness and increased risk of cancer, but 60% of the cases come with the added bonus of learning disabilities and developmental delays.  Our only power was in our ability to be proactive about his learning and do everything we could to stack the odds in his favor. Therapists came to our home for the first 18 months and he began in a developmental preschool by age 2. From then on, he went to school, on a bus, 5 days a week and received physical therapy, speech and language therapy and occupational therapy as well as small group instruction. He continued to have regular therapies and specialized education throughout his school career right up until 12th grade graduation. He had 12 month programming for many of those years and the evidence of success came through the school reports which documented progress.  He didn't spend his summers learning sports or enjoying sleep away camps, he spent them cementing his learning and struggling against regression. 

Does that mean our son missed out on being a kid? In some ways he did, but we found balance. We searched out creative solutions and found summer schools where he could spend half the day in a YMCA camp with extra support, signed him up for adaptive sports teams, put a swimming pool in our backyard and played outdoors as a family.  From age 12 through 16, he even flew solo, cross country, each summer  to spend a week in summer camp with other kids who shared his lot in life. His childhood was as normal as it could be without sacrificing his potential. The goal was to give him every opportunity to have a fulfilled and autonomous adulthood in which he could provide for himself (and a family down the road). And now here we are, in yet another of those big moments which lead to small victories.

Tonight is the first night that this almost 21 year old man will sleep in a rented room and practice his
self-sufficiency. We did right by him. He may not have had the same experience as other boys along the way, but the other boys were not on the same playing field he was on. His life was fraught with extra challenges and he overcame them. We watched for changes and we waited for symptoms, but we didn't stop fighting while we did it; we fought harder. We surrounded our son with a community of people who understand him so that he would never feel alone or different and we found ourselves a family.

My tears of uncertainty as he rounded the bend earlier today are not for lack of confidence that he will do well. I've seen what he can do. My fears and my ambivalence are grounded in how the world will treat him without my watchful eye to protect him. I'm just going to have to trust that we did all we needed to do to equip him to fend for himself. I will put my faith in his ability to figure out whatever we missed and to know that he has our support and love every step of the way.

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

Marriage's Chais and Lows

On July 7, 1997, I married the man who I believed in with every ounce of my being. It was a civil ceremony. We had both been married before and each of us had two young children whose needs we were obligated to consider, and two not yet realized. Our vows were not just to one another, but to the family that we were about to create. The odds were against us. 70% of second marriages with children fail. We were bound and determined to beat the odds. It wasn't easy. Actually, it is damn hard at times. In addtion to the second marriage stats, there are the stats against couples with special needs children. It has been documented that there is a higher divorce rate in these families than in the general population. In some ways, for us, having our son with NF was the glue that bound us together.

With our mutual devotion to the NF cause and our unwavering support for our son, we have always had this point of cohesion. I am aware of the blame factor that happens between couples in our situation. There is also often jealousy that comes into play with the demands for time that a child with special needs requires. We have been very fortunate not to have fallen into these two traps of marital destruction. I suppose part of that was due to the multiple other dynamics, all vying for attention, in our union, but whatever it is, I am thankful for it because I know myself well enough to understand that this would have been my breaking point.

On September 7, 2003 despite the huge obstacles and impossible probability, we consecrated our marriage under God in a religious ceremony, surrounded by our family and our friends. It was an incredibly meaningful and spiritual day.  Again, we took vows. This time our promises included six children, one another and a higher power. This was not a decision that we took lightly. It was a renewal and a new beginning all at once.

Today, we have reached our 18^th year of matrimony. The number 18 has tremendous significance in Judaism. It is the number Chai, which means living or being. Since life is the highest of all blessings, this number carries great weight. Marriage is not passive. It is active, with constant energy needed to sustain its life; its Chai. The dedication and commitment that is made in a ceremony of marriage, is not to be forsaken and Peter and I have had to remind ourselves and each other of that many times through these 18 years. We have so many lives, including our own and our pledge before God, who depend on us to continue to defy the odds of second marriages and we remain true to that, even when it has felt impossible.

Our 18 years have had beautiful moments: the births of our two children, Jesse and Alexa, the B’nai Mitzvahs of all our children, the graduations, accomplishments and family togetherness that we embraced. There has been loss, imperfections and heartache as well; as is with life, or Chai, which we have somehow managed to survive together. There is only one thing that I want for our Chai anniversary. That one thing, is actually not a thing at all, it is a philosophy. I want us to have the clarity to remember this day 18 years ago and everything that brought us together, everything that kept us together through the last 18 years and to foresee a future of being together for the next 18. 

L’Chaim, to Life!

Chai-ya! Take that, Statistics!

Me Too

I have a confession and some apologies to make.  I confess to feeling more sympathetic to my disabled son's needs, than to my other children's. I know that the reason I have felt this way is because he was given this unjust life sentence of having a progressive tumor disorder.  He has had to endure endless specialist visits and procedures, has struggled with learning, has an uncertain future; so this seems perfectly natural, doesn't it?  

In retrospect, I have this horrible feeling of guilt (any mother's plague) for behaving this way.  I keep seeing my youngest daughter's crumpled face, eyes wide, sometime around the age of three, as she pleaded with me: "Me too."

It was a normal cold winter's day in our home. The older kids were at school and I was getting the younger two ready for their respective preschools.  Although she is younger than her brother, I left my daughter to struggle into her snow pants, boots, hat, scarf, mittens and coat by herself.  Meanwhile, I attended to my son, who could not even manage his own coat, never mind attempt snow pants and boots!  I got him zipped, tucked, bundled, and.. screaming because he couldn't bear to be so confined by clothing. I didn't even notice his sister fumbling with her mittens as I hurried them out the door to get him distracted by a video in the car.  She held the mitten up to me and assaulted me with her request, "Me too."  In my frazzled state, I was even irritated by her incompetance!

What kind of unrealistic expectations have you placed on your unaffected children?

Here is my list of transgressions:

1. "You should be more patient with him because it's not his fault."

Why is this unrealistic? First of all, ALL brothers and sisters annoy each other. How am I preparing my children, all of them, for the real world if I try to protect them from each other? 

In the end, their family is going to be their safety net. If they aren't permitted to feel natural feelings of annoyance and disappointment in one another, they won't learn how to test that net.  My hope would be that they would learn to cope with those feelings within the safety of their own family and take that knowledge with them into life.   

Maybe, just maybe, it will teach my unaffected children how to evaluate each person they meet with a broader perspective and it could teach my affected child how to let comments and gestures from others roll off his back with a little more ease.

   2. "You need to figure it out on your own."

How many times have I expected my other children to tie their own shoes, attempt their own homework, find their own rides, solve their own problems, because I was "busy" with their brother?  Too many times to count. 

Although I do feel some guilt about this, I don't think this was entirely a bad thing.  I think that often times, we are too quick to solve our children's problems for them. We don't want to see them struggle. I don't know where or when we decided to be this way, it was definitely not from our parents! I don't remember a time that I asked my parents for help with homework. Seemingly, our parents' generation knew that kids needed to struggle in order to develop their brains for critical thinking and to empower them with problem-solving skills.  There are whole articles written on this topic.

I do regret not having more patience with them. I was so often overwhelmed by my son's needs that I often felt irritated when my other kids asked me for help. 

  3.  "I expect more from you."

I saved this one for last because it is the sum and substance of it all. I may have never actually uttered these words to my children, yet there is no doubt in my mind that they know this.

 This one is not as much of a regret for them as it is for my son. By expecting more from his siblings, I have actually expected less from him, haven't I?  I have always encouraged him to work hard and be his best, yet, I fear for him more often than I do the other kids. I fear that he won't be ready for college when his peers are. I fear that he will not find a job situation that will show him compassion. I fear that the world will be cruel and unkind. I fear he will be alone, in pain, unhappy...I could fill this page with my fears.

Of course, I have the same kinds of fears for all of my children, but the feelings are so much more intense when your child is born at a disadvantage.  I know in my heart, that the others are going to be just fine even though they have all had their own struggles in life. I don't have the same confidence for him.  This is the most troubling aspect of all.

Now for my apologies:

To my Biggest Kids, 

I expected the most from you. You were so much older and in my mind, less needy. I know now that this was not the case. You were just as needy, but your needs were different. I am sorry that I may have made you feel insignificant at times. I am sorry that I made you grow up faster than you should have. I am sorry that I expected you to know certain things, to be more compassionate and to have an understanding beyond your years. Just as your brother didn't ask to have NF, you didn't ask to have a brother with special needs.  I love you with every ounce of my being and wish for every happiness in your life.  You are strong, you are capable and you are amazing. You are not inconsequential in any way.  There are some very important life lessons that you learned by being his sibling.  I don't wish to discount that, but you may, at times, have felt less important to me and for that I apologize.  I never wanted you to feel that way.

 To the Baby,

You may have been born last, but you were not often given the opportunity to be the baby.  Having a "bother," (which you quite aptly misspelled on one his birthday cards) who needed so much attention from me, was often unfair to you.  I have expected things from you that were far reaching for your age.  I've expected you to take care of him, to watch out for him, to include him and to have more patience than any sister ever could.  You have always risen to the occasion and have sacrificed much of your own identity to be a "good" sister.  You have traveled countless miles, sat in waiting rooms, entertained your brother during recovery periods and shown compassion beyond my expectations.  You have never complained about any of this and you have never expressed any wish to have it be different.  I am so sorry that I didn't have more patience when you needed me also. I am sorry if you ever felt left behind.  You are a special girl and you have such empathy within you; not many are given that gift. I just want you to know that I love you and respect your kindness more than I can ever express.  My hope is that you will never again in your life have to say, "Me too."

My confessions are made and my apologies have been expressed. Do I think that with hindsight, things would have been any different? Absolutely not. We are human beings. We do the best we can in any given situation. Having a child with NF can be very stressful on so many levels. We have to cut ourselves some slack because our expectations of ourselves are often the most unrealistic. We find ways to make all of our children feel valued and loved, but the truth is that circumstances determine who needs the most from us and our other kids find their way. They learn to be stronger and to have more compassion for others. They are better equipped in life than their peers.  Perhaps they need special times alone with us to compensate, but what I say to that is: "Me too." It's a win/win situation.