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The reason we are here tonight is because autism is an epidemic destroying
the lives of our children. And you are here tonight because you care enough
to invest your time and money in becoming part of the solution.
While each child will progress at a different rate with varying degrees of
success, we know that all children can be helped with very intensive early
intervention. Some may actually become independent adults; most will acquire
skills and are capable of making contributions to society, but will require
assistance as they enter adulthood. When the children are diagnosed at 2 or
3 years old, we don’t know who the lucky ones will be. We know they all have
brain damage – autism is a neurological disorder. But it isn’t until about
the age of 5, after years of treatment that we can see just how severe the
damage is.
Because we had a typical child, Dara, before having Alexa, we thought after
her diagnosis it would be important to try to bring Alexa into our world,
rather than to allow autism to consume our lives. We didn’t want to lose our
friends because we were depressing people who always talked about autism,
and we didn’t want Dara to miss out on anything or sacrifice too much. We
didn’t want to make new best friends because they had an autistic child, nor
did we want to discuss it all the time. We just wanted to have as normal a
life as possible with our additional challenges.
However, last fall we were at a large dinner party where the host made a
toast preceding the meal. He innocently included a comment that he was
thankful everyone was healthy & well. As Alexa was sitting next to me at the
time, I was in complete shock. How could someone consider a child with a
brain disorder who will probably never lead an independent life healthy and
well? Because her face is so perfect and innocent, her disease is invisible.
It was at that moment I realized I am not doing an effective job at
communicating what autism is.
Alexa cannot go to a typical preschool or camp with her peers. Since the age
of 2, she has literally worked a minimum of eight hours a day both in school
and with teachers in our home. She has made dramatic progress from where she
started, but she still has quite a way to go.
At five years old she is not potty trained although we have been trying for
1 ½ years. It is quite challenging with a child who doesn’t understand the
difference between wet and dry. She will enter kindergarten in a self
contained class with a full time shadow as it is too dangerous to leave her
alone for even a moment. Her lack of ability to understand simple commands
as don’t run or stay here keep her in constant peril She can’t comprehend
that if she runs in the street a car will hit her and that if a car hits her
it will hurt. And if I see her running in the street and yell stop, it will
be too late before her brain can process that information.
She has very weak motor skills. She cannot dress herself. She doesn’t hold a
spoon upright, or play sports at the level of a child her age.
She can’t communicate when she is hurt or sad, so we are forever guessing.
As a result of her progress, she is beginning to communicate some of her
needs like “I want pizza” or “I want water”. But she cannot understand or
communicate the concept of hunger or thirst.
She does not have social skills. She can be around other children, but she
doesn’t play with them. And she can’t respond when they try to talk to her.
Yet to me, she is the apple of my eye, the love of my life, my sweet
innocent angel. A truly innocent victim. A person who brings warmth to my
heart beyond my imagination and joy to my every day.
But I certainly wouldn’t describe her as healthy and well.
What’s very interesting about these children is that they often have what we
call a splinter skill; a particular area where they truly excel. Somewhat
like Dustin Hoffman in Rainman and his ability with numbers, these children
are often very bright.
At age four Alexa was fully reading and spelling. At her five year old check
up, her pediatrician asked me, “So how is he doing?” I went through the
basic list of cans and cant’s and then I said, “but she reads; she has been
for about a year.” The doctor replied, “ what do you mean she reads?” I said
she reads. I picked up a book and handed it to Alexa. In her soft voice she
proceeded to read for the seasoned pediatrician who was at a loss for words.
“How long has she had this book? She asked. How many times have you read it
to her?” “None”, I replied. It’s your book. I just picked it up.”
To me that indicates there is hope. I have a very smart little girl who is
begging to be saved. And with the investment in time and money she will make
some contribution to this society, perhaps greater than the typical adult.
Unfortunately, she will probably always need assistance. On Dec. 14 I had in
my home, Mike Darcy; the it in the field of autism. I eagerly awaited this
day as I thought our miracle was about to walk through the door. Much to my
surprise, his assessment was devastating. He stated she would not mainstream
in school any time soon if ever and becoming one of those lucky few who
truly make it was probably not going to happen.
To me, this was more painful than the day she was diagnosed at 22 months
old. On that day I just thought OK, I will fix this. On this day I was
struck by the reality I can’t fix everything.
So while I will fight to my grave, it was time to devise a new strategy.
I thought if I worked out harder, and ate and drank every anti-oxidant know
to man, I’ll be here to ensure she’s o.k. But the reality is I won’t be.
Unlike our parents who ran to have children in their early 20’s, our
generation as a whole waited longer. While we were pursuing our careers, we
weren’t thinking we might need more time on the other end.
So by Dec. 16 I had a new long term goal for this foundation…to build an
appropriate facility for Alexa and perhaps a dozen children like her.
Because the children who don’t make it will become adults who didn’t make
it.
Since autism is a epidemic among our children, in 15 years it will be an
epidemic among adults and no one is planning ahead. So each year substantial
money from our dinner will be saved and invested for this long term goal.
Last year I spoke about beginning a social development or peer modeling
program. Many children who do well academically cannot acquire social
skills. They may have excellent grades, but at recess they sit in the corner
of the playground with no friends. If we don’t teach these children how to
interact with other children, they will become adults who are very
intelligent, but incapable of holding jobs. If you can’t look a person
directly in the eye and say “Did you find what you were looking for today?”
You can’t even ring a register at Waldbaums.
A Gift From Alexa contributed $8,000 last year to a new program in the HHH
school district. HHH lends the classroom space but provides no funding for
staff or supplies. The program is privately run by another foundation and
can only continue to operate as long as we raise enough money to pay for it
entirely. The program was devised by a leader in the field of autism and the
staff was trained by his team. Seventeen children have already benefited and
additional children will be added this year.
The school district has also provided us with a wish list of supplies they
need but don’t have budgeting for. It is our intention to fill the gap
between what the budget allows and what the children truly need.
We also contribute to a variety of schools for autism. The most important
reason is to bring staffing to an appropriate level. While we know very
intensive one to one early intervention can have dramatic results, the state
of NY only funds at a 3 to 1 level. That means the schools have to provide
the money themselves in order for there to be any hope for positive results.
In addition, we would like to help individuals and their families who cannot
manage the financial burden of having a disabled child. Most 2 and 3 yr olds
don’t need a neurologist and many don’t accept insurance. We want to ensure
that any child can receive appropriate care.
In order to accomplish all this, it is critical we have a successful dinner.
Last year I intentionally did not mention names in thanking people because I
was too concerned about forgetting somebody. However, this year I decided
there are four people who are so instrumental in this evening they must be
mentioned. For them, this charity is a daily thought, and their dedication
is immeasurable. Melanie Muhlstock, my chairperson, Aimee & David Shanker
and Shari Plocker, thank you for your continued commitment since our
inception. And to my husband Rich, thank you for understanding that I will
never be projectless.
And to the merchants….you cannot imagine just how hard it is to gather the
amount of merchandise and services it takes to do an event like this. Please
save your dinner journal and use it as a resource guide. Tell the merchants
you saw their ads in our book and you want to give them your business in
return for their charitable efforts.
And to all of you who are here tonight……if you haven’t heard everything I
said tonight, please hear this. In developing and presiding over this
charity for two years now, I have learned a great deal; some lessons harder
than others. I have realized there are two types of people. Those who are so
consumed in their own lives and desires and actually think it’s ok to be
that way. And those who realize there’s more to life than big houses and
Bryant & Cooper. Thanks to all of you for being in the second group who
understands as fortunate people we have a responsibility. And thank you for
choosing A Gift From Alexa to support with the many that bang on your door.
Because regardless of how hard I work or what I do, if I can’t fill a room
with people like you, we can’t reach our goals. I hope you leave here
tonight feeling that your evening and your money was well spent and with the
feeling of peace and satisfaction you can only get from doing something
selfless. I hope you realize you were a part of something that made a
difference in this world and that you will continue to stay committed to our
organization.
On behalf of the children who can’t speak for themselves, that you from the
bottom of my heart.
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