"Thank you all for coming to this important program. It is so nice to see such a great
turnout. My name is Amy. I have three children, Jackson, Noah and
Lily. My oldest son, Jack as we call him,
suffered a birth injury which resulted in significant cognitive deficits, some
weak gross and fine motor skills and some social and behavioral issues as well,
so when it comes to special needs, we pretty much run the gamut.
When Andy first asked me to speak at today’s film festival
about my experiences being the mother of a child with special needs my mind began
to race. There are so many things I
could say. So many things that I want to
say, so many things that I want to put out there.
I thought about speaking about how at the moment you realize
your child has a disability you begin what I think can best be described as a
grieving process.
·
You grieve the typical child you have lost. Generally, when you find out you’re
expecting a baby or when you hold a newborn-- your newborn-- the world is full
of possibility— You look at a sonogram
picture or look into the squinting eyes of your brand new baby and you think “who
are you little one?” Maybe someday you
will be a doctor or a lawyer; Maybe you will
one day cure cancer. Maybe you’ll be an
artist—a poet or a dancer. The world is
yours. But the instant you find out your
child has a disability, whether that be when your child is still in utero or shortly
after his birth, as was my situation, or when your child is two years old—whenever
that moment occurs, your previously held
dreams begin to crumble. Suddenly you
enter survival mode and your dreams become much much more simple. I hope my child will walk one day. I dream that my child will speak one
day. I pray my child will be able to
make a friend. The grief for the child
and the dreams you lost is real and it is unrelenting.
I thought also about speaking about the loneliness,
isolation and heartbreak that often go hand in hand with being a child with a
disability and being the parent of that child.
·
Often when I watch my son clap compulsively or
say inappropriate things or ask a question for the 25th time in two
hours, I think about what his life will be as he grows and becomes more
independent. I fear bullies and their
cruelty. The need to protect Jack from
the cold hard world is almost primal. I
will protect him, I have often thought.
I will take care of him. I won’t
let him be hurt. But I know I can’t do
that forever. I won’t be here
forever. And the thought of that is
simply terrifying.
·
Once I
get past fear, though, there is another emotion lurking beneath the surface and
it is as difficult to experience as fear.
It is sadness. My son is ten years old and not since he was a
toddler has he been invited on a play date at the home of a typical child. Not since he was 3 has he been invited, on
his own, to the birthday party of one of his neurotypical classmates. He is often invited to tag along with his
brother on play dates or to birthday parties and he has a group of children
with disabilities who he counts as his friends. I have friends that include him
in family gatherings and my husband’s and my family certainly welcome him. He is not entirely alone—yet, the fact remains
that a huge percentage of the population doesn’t see him. They don’t get past the stemming. They don’t take the time to wait for him to
answer a question. Their face grimaces
slightly when they attempt to talk to him and realize that he isn’t your
average ten year old. They don’t know
about his sense of humor, they know nothing about his love of baseball or how he
takes tae kwon do or that he loves music.
A huge percentage of the population pretends he doesn’t exist. Looks the other way, just as the woman at the
bus stop did in the film we just saw about Down Syndrome. My son’s presence makes some people
uncomfortable. Visibly and clearly
uncomfortable. If I am to speak
honestly, I will confess that before I had Jack, I was guilty of this. I don’t believe I ever took time and stopped
to really see the disabled young man who bags my groceries, wheelchair bound
children or adults that passed me at the mall weren’t on my radar screen, I often
looked at inconsolable tantruming children with impatience—and boy did I judge
their parents. I thought they were
incapable “I will do such a better job
parenting and my kids will never act like that.” I used to think that. I don’t judge any parent or child
anymore. Not anymore.
Never again.
I thought about speaking about my worry about what will
happen as Jack ages. And what will
happen as his siblings grow and potentially move away. Will he have a life of his own? I think about how my husband, Jonathan, and I
currently have an estate plan that includes “living forever” because we don’t
know who would be willing and able to accept the challenge and stress of caring
for him in the event we aren’t here to do it.
I thought about talking about the impact my son, Jack, has
on the rest of our family.
·
My husband and I are divorce attorneys by
profession. If fifty percent of
marriages end in divorce --Some studies have shown that the number rises to
between 80 and 90 percent of marriages which include a child with special needs. As I walk the walk of having a disabled
child, I see why this might be the case.
Raising a child with significant needs is exhausting. It can be emotionally, financially, physically
and intellectually draining. Sometimes
at the end of the day, my husband and I look at each other and realize we just
have nothing more to give. Sometimes our
tanks are so empty it takes everything we have just to say goodnight to each
other. Sometimes our anger and
frustration about our situation—Jack’s situation-- directs itself
inappropriately toward the other. Compounding
the issue is that it is difficult to find respite because of the challenges
involved in caring for our son. There is
precious little time to ourselves.
Precious little time to remember that before we were Jack’s parents, we
were carefree.
· As the mother of two children without special
needs, I feel a huge sense of guilt for the energy it takes to parent their
sibling. I notice how they have learned
to clear the room or busy themselves with a toy when Jack has a breakdown and
their father and I attempt to address the problem. I know they each feel a sense of
responsibility to their brother and although I think that is amazing to watch, I
think about what a burden that is to them.
Being the sibling to a special needs child is not easy. It changes who you are. It places firmly upon your shoulders the
heaviness of responsibility and worry before you are old enough to comprehend
what those are.
So I had all these thoughts about what to speak about. And then as I reviewed them in my mind I
realized that everything I thought to speak about involved the difficult
aspects of being the parent of a special needs child—There is grief, there is
fear, sadness, worry, exhaustion. There
is conflict and there is difficulty.
And although these things are all real and important and worth speaking
about—they really are only part of the story.
Not even the most important part of the story. Being the parent of a special needs child is
also an amazing privilege which no doubt has enriched my life and it has
enriched the lives of our entire family.
· Being Jack’s mom has allowed me to gain,
suddenly and quickly, something that I didn’t have before and something that, in
my humble opinion, an alarming percentage of the population
lacks—perspective. Suddenly I am able to
evaluate the importance of things at a rapid clip. Suddenly whether my children have any
athletic talent or make it into the Ivy League matters not at all. What matters is that my children are able to
find happiness. What matters is that
they have friends. That they have a life
that fulfills them. The details suddenly
became unimportant.
·
Being Jack’s mom has made me realize that you
should never ever allow anyone to set limits for you. Doctors told us initially that Jack would
never walk or talk or feed himself. Jack
didn’t know that this was his prognosis and he has achieved every one of those
milestones and then some. He works so
hard to perform the tasks so many of us take for granted. Every time I worry that Jack has reached a
plateau in his development, he moves upward.
I have had the absolute pleasure of watching Jack learn and grow and
prove his naysayers wrong. He is the
epitome of determination and strength.
He is an inspiration.
·
Being Jack’s mom makes me remember to SLOW down
and celebrate the small moments. In the
rushed world we live in, it is easy to concentrate so hard on getting to our
destination that we forget that life is really about the journey. You can’t rush Jack. You can’t get him out of
the house quickly, can’t force your sense of time on him. He does things on his own timetable. At age 2, he could only say one word. At age 3, he probably had close to 50
words. By 4, he had so many words we couldn’t
count them. Now as I watch Jack learn to
read—albeit at a very slow pace—I realize how much we should celebrate these
small milestones and victories. What is life, really, but a series of
steps—some big and some small? All are worthy
of being celebrated.
·
Being Jack’s mom has allowed me to find the most
incredible network of women who also parent special children. Women who have become my mommy soul
mates. There are some people who just
get it and had I not had Jack, I might not have forged such strong friendships with
these truly amazing people. For them, I
am thankful beyond words.
·
Although I spoke earlier of how parenting a
special needs child can weaken a marriage and how difficult it can be to have a
sibling with special needs, I think the opposite can also hold true. My neurotypical children are
compassionate. They see people with
special needs. I mean, really truly see
them. They are kind. They are not frightened by disabilities. They may be curious, but they
understand. And as I watch my husband
parent Jack, I fall in love with him over and over again. He has the patience of Job. He is strongly gentle. And gently strong.
So in the end, I suppose the message I want to leave you
with tonight is that although being the parent of a child with special needs is
extraordinarily difficult and at times can be heartbreaking, being the mother
of a special needs child has also enriched my life beyond measure. I believe there is a reason this amazing
little boy entered my life. I will be
forever thankful our souls found each other. "
