They say, “It’s who you know…..”. In the scheme of things, it’s the, who, what,
where when, why and how. Anyone that
knows me knows that I spend a great majority of my time focusing on the “WHAT” and
“HOW”. These elements are extremely
important when you are raising 2 sons affected by Fragile X Syndrome and
Autism. We’ve developed ways and
approaches for personal care, work tasks and recreation, among many others. But, in reality, we’ve learned that it’s the
“WHO” that really matters.
When the boys were born and later
diagnosed, we were not blessed with the convenience of having family nearby to
help us manage the day-to-day. They’ve
been outstanding morale support, but lived a 2-days drive away! So, it was up to us to come up with ways to
get a break without the boys in tow.
Many of our friends from school were still in college when we had our
boys, or they were just starting out on their career path, so they could not
possibly relate to our situation. One of
the many pluses for us was the fact that we lived in the same house for many years;
therefore, we had a good knowledge of our neighbors. One of the first real established
relationships we gained was with a neighbor couple. Their kids were older, but they had “been
there” and understood the need for a break.
Little did we know how important these people would be in our life.
During our boys’ school years, there
were also many “WHOs” that played an important role. Some without the knowledge or acquaintance of
the boys themselves. In Jake’s (our
oldest son’s) very early years, we became familiar with an important and very
kind gentleman known as the School Advocate.
His love for kids with disabilities was generous and giving. He helped us make decisions that we had no
basis or knowledge of. These decisions
would shape the future years of our boys’ educational lives.
Throughout their lives, the boys
received the hourly equivalent of years in service by doctors, therapists and
teachers. Looking back now, I can say
that, if we had to be diagnosed with Fragile X, Denver was the perfect place to
be. This is not just “taking lemons and
making lemonade”, but the truth when it comes to service providers. Two very special individuals have molded and
continue to mold and hone people throughout the world when it comes to
Fragile X. Tracy Stackhouse (world-class
O.T.) and Sarah Scharfenaker (world-class Speech Pathologist), are one of the
main reason I am still standing upright today.
Their ability to identify, assess, diagnose and treat any challenge is an
understatement. We still affectionately
call them “our Fragile X Saviors”. This
is not a title I assign lightly. To call
them our friends is an honor.
Along about 3rd grade, there
was also a Special Education Teacher that shared her knowledge and expertise in
an effort to really make a difference and allow Joe (our youngest) to
thrive. Thriving was not Joe’s strong
suit in 3rd grade, but he became a real participant in the community
called school during her tenure. It was
a rare scene.
I remember clearly, another lady who
made a subtle, but long-lasting impact on Jake’s life. She was a paraprofessional when he was in 5th
grade. She was able to see through his
disability to his heart. She understood
his quirky sense of humor and his desire to participate even though he was not
a communicator. One day, she insisted on
coming to the house, picking Jake up in her super cool convertible, and
transporting him to his favorite place…..Taco Bell! To this point, he had never been anywhere
except school, without us. He did so
well, despite our inability to let go and allow him to practice these
skills. It was extremely scary to allow
someone else to be in control during these years. There were way too many uncertainties for us
to even take that chance! What if
something happened during an outing?
What if someone didn’t know what to do or what Jake was saying??? We just could not take that chance to this
point!
Along the way there were countless other
students that had kind hearts and gave their time to befriend our boys. These are too many to name one-by-one. One that deserves special mention is a young
man named “DB”. “DB” has a very strong
family and a giving nature. He started to
mentor both of our boys when the opportunity came up for him to participate in
Special Olympics basketball. To date, he
has been Jake’s personal basketball mentor for more than 5 years. Even though Jake has to be coerced into
playing and sticking with it, “DB” really hung in there. Through his tutelage Jake has been able to go
from a “participant” to actually making baskets! He is very special to our family.
During Joe’s high school years, there
were several, powerful, impactful forces that guided him. These were so meaningful and personal for
Joe, that it is difficult to describe them.
Joe was going through puberty and trying to learn “the ropes”, which
made for a challenging and stressful Joe.
Having a teacher that understands the struggles you face each day, being
able to shape those challenges into successes and then to adopt them in everyday
life, is rare. But, Joe was the lucky
recipient. His high school years were
the real pillar in his development for adulthood. Specifically, 2 individuals, made a huge
difference. One Special Teacher and one
Special Paraprofessional were his Angels.
During high school, both boys really
started to come into their own and begin to develop work skills. The people that took a forward-thinking
approach to teaching and helping them to succeed still resonate today. As Jake and Joe graduated and we saw the need
to move on, we also had to figure out how to enroll others in that
scenario. This is a scary and very
necessary detail. It became very clear
that for them to work and travel their community could not be done without some
kind of supervision. How would we
incorporate this necessary element into something that was as meaningful as
work? It all came down to the “WHO”?
Chris and I often talk about another
gentleman that made more of a difference than he will even know. This guy was the one that cut and styled my
hair for years. As we approached a time
when we knew we would have to eventually teach Jake to go to the Salon, he was
our guy. I asked him if he would be
willing to work with me on teaching Jake the approach. I use a 3-tiered approach that includes 1.
Person 2. Task and 3. Environment. He
was the person and the task. Jake would
be familiar with the environment (home).
So, he agreed that he would be willing to come to our home each month to
give Jake a haircut. Little did he know
that he would commit to doing it for 4 years!!!
Finally, Jake showed us that he was ready to move to the Salon. He was familiar with the task now and the
person, so that should be no big deal.
It wasn’t. Today, Jake is able to
go a completely different salon, have a different person (also a hero) give him
a shampoo, cut his hair, and he pays all by himself. THIS IS HUGE!!!
In retrospect, we have been the luckiest
people I know! Good and kind people have
been all around us for as long as I can remember. One such person is a young lady I will call
“A”. “A” started working for us during
summers about 5 years ago. She was a
high school graduate that wanted some extra income during her summers. We needed a good care-giver, so the match was
made. After 5 years, she has become such a crucial element in Jake’s life, no
words could possibly describe it. “A”
has been there as a daily provider, confidant, and a good friend to Jake. She guides him through the aspects of his day
and does it all with grace. She exhibits
such a calm and persistence that no one else could. No gift is greater than this.
As Joe finished high school and was
ready to move on to “adult life”, we were lucky enough to utilize one of the
paraprofessionals from school for the first summer. He was one of the special forces that had
taken a liking to Joe during these years, and that friendship continued. Once Fall came, we had to breech the subject
of a new person. Through what I like to
call fate, we were fortunate to find a young man that wanted to give working
with folks with disabilities a try. Oh,
how fate is my friend. We will call him
“DM” for purposes of this blog. “DM” is
an amazing man that possesses the rare qualities of kindness, patience and coolness. All of the traits that Joe adores. It is a miracle that he entered our life, and
continues to be a vital force.
Having some time away from the boys when
they were little was as critical as breathing.
No one can care for and oversee the care of 2 very involved, complicated
kids and not get a break---at least and survive! In a sense, we felt like there really was no
one that could do the exact job that we did.
But, what we learned is that, we shouldn’t expect it. When they were in school, life was somewhat
easier to manage, and in turn, it was easier for someone else to take the
helm. Getting them ready for school,
feeding them, clothing them….that could be transferred. Get them on the bus, and then they are in
school until late afternoon. Get them a
snack, dinner, bath and off to bed. All
doable. But, it would require a special,
patient person. We had that in our
neighbors. They, more than once, took
over and provided every essential need, and spoiled them to-boot! We cannot possibly express our full gratitude
for those years.
For the past 12 years, we have solely
focused on the “what” and the “how”.
We’ve implemented life skills, a sensory diet including self-regulation,
taught them how to take care of themselves, and how to be productive at a
job. The one thing we forgot, or, shall
we say, neglected, was our own ability to get away. This was not intentional, but merely a result
of the situation being what it was.
Ok…..maybe the fear built up and up over those years and we became
comfortable in the “not having a break” scenario. What we realized was that the longer we
allowed ourselves to NOT do it, or made excuses NOT to do it, the easier it
became. As with all things in my life,
challenges must be overcome. I knew HOW
to do it, I just had to take the first step.
Initiation is not an easy task.
Once we made a plan for the “WHERE” and
“WHEN”, the decision on the “WHO” was fairly easy. “A” has an amazing Mom we will call “C”. “C” has helped us during the summertime before,
too, and both of these ladies are simply friends of the family. Even the best of friends probably didn’t know
all of the details involved in caring for the boys during a full 24-hour
period. This we knew. This we were realistic about. The reality made it harder. When the guys were young, it was just a
matter of going through the motions to provide every need they had. Now that they have become adults, the
awareness and dignity have shifted. We
knew that “A” and “C” would be the perfect candidates for the task. Once they agreed, we put the wheels in motion. Thankfully, the “WHEN” was 5 months
away. Together, we formed a plan of
action and implemented it.
Today, as I sit on a tropical beach
writing this, I ask myself, “What price could possibly equal the value of these
gifts we have received?” Or, “How would
our lives (all of us) be different without these people that have had such an
impact?” I cannot formulate an
answer. These are such grand gifts that
they cannot be valued. They cannot be
measured with any human form of measure.
We are truly grateful and humbled by all of these people that have
contributed to the life and well-being of our boys. In all of the things that others consider
important, I believe it’s the “WHO” that truly makes a difference in all
aspects of our life. Our family has
grown exponentially and in a way that cannot be measured by simple means. Except if you are counting……angels.
