Monday, June 8, 2015

Mary Harrison's comments at Jewels' Bar Mitzvah

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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