Shabbat
Shalom.
Mazel Tov
Jewels! You have done a remarkable job
leading the congregation in prayer and song.
Dad and I are very, very proud of you.
I thank you
all for bearing witness today of what can happen in the community when we all
work together for the benefit of our children and adults with special
needs. You have heard me say, autism
does not discriminate, autism doesn’t care what a person’s religion or race is;
it doesn’t care where you live, or economic circumstances, autism has no regard
for heritage. It affects any and all
demographics. The current statistic is 1
in 68 children born today is diagnosed with autism. Let me put this into perspective: In 1975, it
was roughly one in 5,000.
But according
to Stephanie Seneff, research scientist for MIT by 2025 one in two children
will be autistic. The scary reality is
that, to date, the cause has not been determined, nor is there a cure.
Those on the
autism spectrum might very well be the most misunderstood and misrepresented
group in our society today. We live in a time where we are most
comfortable slapping a label and writing a prescription. Where devices have replaced direct
communication.
In a recent
conversation the topic came up about whether children with autism can actually
understand God. I believe God made us
and has placed in each person a desire for truth and justice, for love and
compassion. it’s like we are all born
with a missing part that only God can fill.
Jewels from
an early age seem to naturally connect to God.
He would sing Hebrew melodies when neither Dave nor I understood the
lyrics. He enjoyed being at services, and
especially delighted in the music. Music
the universal language became his mode of communication. Rabbi Hammerman, you have been incredibly
welcoming; you created a space for Jewels and for children like him at Temple
Beth El. Cantor Fishman,thank you for courageously
jumping in to help bring him up to speed on his prayers. And, and many thanks to Cantor George Mordecai
for helping us to get started on this amazing journey, for providing the music
and for his support in the initial stages of preparation. .
Dave and I
have benefited from the many friends, teachers, therapists, classroom teacher’s
aides, and van drivers who each day choose to get into the trenches to work
with our kids. Their patience and
commitment are to be applauded. It is
from these individuals I have learned how to parent a child with autism. Many
of these men and woman have children of their own and oftentimes they are the
ones I’ve turned to for advice on behaviors, skills for daily living and help
on academics. Thank you Jeanine Sam and
Matthew MacDonald for working with me at home during practice sessions. I would be lying if I said it is easy. It is not, but it is by far the most
rewarding job I’ve ever had, bar none. And
I have met some of the best, most giving individuals on my journey….
Today, my
cup is full. Because of you – members of
Temple Beth El, who stood by my side when my mom passed on I was only 4 months
pregnant with Jewels. You taught me how
to mourn and how to remember. Your members suggested the Birth to Three Program,
when I knew something was wrong, but didn’t know what to do. Thanks Allison Greenbaum. You encouraged me to look into further
assessments and therapies without using the
dreaded A for Autism word, because you knew we just couldn’t handle it at the
time. Thank you Meryl Aronin, of Blessed
memory.
Supporters
of Jewish Federation should be proud of what this wonderful organization does,
not only here in Connecticut but also in other states and around the world. Jewels and I went to California for about 3
months, it was Federation that connected us to resources within the community
and other families like us, and to a wonderful Hebrew teacher for Jewels, who
crossed the country to support Jewels on this special day. Thank you Mazel. Because of you and your colleagues, we felt
right at home despite being so far from friends and family.
If it wasn’t for autism, I probably would
never have met the Warrior moms from the various support groups headed by Judi Anders, Sped Net, New Canaan and Michelle,
TACA.
Autism moms
are loving and tough. I have worked in
the corporate and non-profit sectors; I don’t think I have ever encountered such
fierce fighters as the moms of children with special needs. And for those unable to be in battle, they
are given extra support . It really has
become for us, an “IDEAL Community”.
Finally there
is a little known group of women I owe a word of thanks, you ladies that meet
in New Canaan for Love Club. You are mostly members of the Mormon Church. Your kindness is far reaching. Without you, Jewels would never have been introduced
to Neil Moore, the founder and director of the Simply Music program, who is
featuring Jewels as a model for the new Gateway program that’s being developed
to help individuals of all abilities.
This program will be offered free to children worldwide.
So you see,
it takes many communities, towns, states, and yes a country committed to
helping this population. I encourage
everyone to look for opportunities to become involved- one person – and one day
at a time. And not just moms, but also hockey
Dads and their teenage kids, I urge you to volunteer for programs like
Connecticut Storm, a special needs hockey team. There are many organizations that help
children and adults based on their conditions.
Do consider getting involved. Together
we CAN lift each other UP .
One of the
biggest concerns facing families today is what happens when our kids become of
age. When they become 21, they exit the
system, are given a diploma and issued well wishes. When
we were in California, Jewels was asked to play the keyboard at a group home
for adults with special needs. Our
experience was wonderful. We
experienced a bit of heaven. He didn’t
want to leave.
Jewels loves
to sing, and from time to time I would recognize the tune. He would memorize songs from the radio, songs
heard on the streets etc.. A couple of
weeks ago, I heard him sing a song he had heard on the radio. He’d been singing it A LOT. In
fact, it’s not unusual for him to start a piano lesson with a tune in “his head”.
His teacher recognized the song, and gave me the words, the following week. It goes like this:
There’s Hope
in front of me; there’s a light, I still see it, there’s a hand that’s holding
me, even when I don’t believe it.
There’s hope
in front of our kids: for Will, Alex,
Elizabeth, for Cos, Michael, and Brandon, for Johnny, Joey, and Jewels and for all
those names not mentioned but are on the heart of God. My Dad used to tell us, the importance of
trusting God’s heart when we cannot trace His hands. Now as an adult I understand. The children of Israel had to first step into
the Red Sea (or the Sea of Reeds) before God did the awesome act of parting the
waters.
We must believe the future will be better for our
kids, and express that through action, and NEVER, EVER GIVE UP.
Shabbat
Shalom
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