As a Jewish mother when my son was diagnosed with autism at the age of two my question was not whether he would be bar mitzvahed, but whether he would ever understand that I love him.
As time progressed and we worked fiercely on developing Beau through his hurdles, communication, expression, and understanding, I started to see some gaps within the ideology of the religion I was raised with.
I was raised in a fairly orthodox way. We went to Shul for every Symcha and high holy day. Sleeping at my grandparents house to ensure that we could walk to shule. We observed all the rituals that went along with this and I didn’t question it as a child. However, The style of religion I was raised with was “all bones and no meet“ there was no flexibility to the law!I But I grew older and became able to choose my own thoughts and ideology as well as the level I participated at.
In my 20’s I had a baby boy. We had his Briss and all my dreams were coming true.
By two years old we already had a diagnosis. My beautiful Beau had autism. And I knew that would be so many challenges ahead of us. But what I was not prepared for was the challenge my religion presented to me.
It was not until my artistic son was old enough to participate in family Simchas, that I noticed there was a problem. Although my religion allows for pregnant women, the elderly and the very ill it would seem that these exceptions did not apply to my son.
As a baby I used to feed him before we all met for the Pesach.My son only eats five foods and has done since he was two years old. The bane of my life is his diet, as you can imagine for any Jewish mother to have a child who doesn’t eat – I can tell you, it’s far more distressing than you are even imagining now. Before the diagnosis I was always told don’t worry he’s just a fussy child, he will never starve himself to death… And I believe them until the day he nearly did.
The first few years when he is a toddler I would feed him before each Seder. A big bowl of weetbix would usually hold him out until I had to take him home to bed. But as the years progress and the more I tried to teach him to sit at the table with us and understand what was happening the more difficult it became. Now I can imagine your thinking it was difficult due to his condition… It was not.
When Beau was eight, I had put so much time into having him involved in the Seder I was truly so excited. This year he would sit at the table and read from the Hagada with everyone, just like everyone!
Unfortunately that was not to be. I arrived at my mothers to find she had not even set a place for him at the table, and before dinner when I mentioned that I would need to put some food on for him she looked at me in horror! “You can’t feed him Chametz in this house!” Needless to say the mother of all Jewish fights broke out.
“Seder goes for five hours“ I explained, “he can’t have no food all night!” I screamed “Give him a Banana” was the reply.
“ I’m not feeding my child a banana for a five hour dinner he needs more“… and so on and on.
As you can imagine I was angry and so was my mother. The tradition and religion she had lived and abided by all her life demanded that my son had no place at a table. In the end my son was banished to another room in the house to eat his food on the floor and my heart broke into a million pieces. My son never got a chance to read from Haggadah that night. And we haven’t been back for any religious event since in over 4 for years.
I was beside myself and I couldn’t understand how my religion could do this and I lost my faith and I lost my identity. In fact I hated Judaism because what mother can accept something that doesn’t accept her son?
I went to Chabad to learn the letter of the law concerning autism and Judaism and what I found out appalled me. In the orthodox world if you have a child with autism the they are sent away most of the time for the high holidays or put into respite while the rest of the family travel to friends or family overseas. I was aghast.
In attempt to make amends and try to see our way through our differences, I called for a mediation between my mother and myself at Temple Beth Israel to see if there was any way that my son could fit into our family on a religious level.
Religion is a funny thing you can throw fact or evidence in a persons face but it’s tradition will always override any logic.
It was explained by the rabbi that there was a way to accept Beau into our Seder and that we could have a placemat set at the table for him – the table representing ‘Eretz Yisrael’ and the place mat separating his food, but still apart of the family.
This was simply unacceptable to my mother, the idea of food that was not kosher Le pesach on her Seder table was more than she could take.
The rabbi tried one last resort
“Do you know of the four sons“ she asked?
“Of course I do“ replied my mother.
“Do you know of the fifth son? The worst son of all“?
My mother stared blankly “no”.
“That is the son who wasn’t even there to ask a question, the missing son and nothing not ignorance not stupidity or rudeness is worse than that son” said the Rabbi.
My mother became furious it was all too much for her she got up and walk out of our session.
At this point if you’ve read this far you may be asking yourself why I am telling this story??
Well my son Beau is to be Bar Mitzvahed this year at beginning of December, something I never thought would be possible. Not only is he entitled to the tradition of becoming a Jewish man but through Rabbi Allison and Etz Chayim I have also once again found peace with my religion.
The problem was not Judaism its self, there are so many levels of Judaism and I finally feel like I have a place that gives me such sweetmeat. A community of tolerance. Patient kind, caring, loving and forgiving Jewish people… the kind of Jew I want to be and the kind of Jew I want my children to be.
Rabbi Allison and I have work together to create an a traditional bar mitzvah that we can all be proud off. We have had to make some changes but in the end my 13-year-old boy will be reading is Parsha, from the Torah, in front of all my family and friends next month.
The point to this story is that it is hard work to get your children who might be slightly different, for what ever reason, to walk the path they are entitled to as Jewish men and women. But I know now that the community that rabbi Allison has created is the kind of Jewish I can be proud of. I no longer feel threatened, embarrassed or angered by my religion.
When Rabbi Allison opened her door to me she welcomed me into her home and arms unconditionally and she does that for Beau too. She sees him a young Jewish boy about to turn into a beautiful sting Jewish man and nothing else.
And for that I will be eternally grateful.
In Rabbi Allison’s Shule there is a place for autism in religion I believe in Rabbi Alison’s Shule there is a place for everyone.
Our children deserve to know and understand our faith at whatever level they can. Don’t stop them because you think it’s too hard for them or for you. It’s not… I can promise you. Rabbi Alison is there for you all and so am I if you need it.
Jemma Wines
#ASDROCKS (Facebook ASD Rocks)
S.A.N.I.T.Y.
Seniors And New Information Technology.
www.sanityeducation.com.au
1300 Low Tech
