The Gift of Growth

Joseph at 7

In 2000, I started a website to document the journey of my first-born who was born with autism.

I wanted to speak about the time before he was diagnosed, the time when he got diagnosed, what we did, how we reacted and what it meant for him.
I wanted to document his journey and mine at a time there was so little about autism and therapies for young children, especially in French.

I created a website and called it “Terouma“, which is the French spelling of a Hebrew word meaning « Gifts » or « Offerings » The meaning in Hebrew implies the idea of separation and elevation. Life had given our family a separate fate because of autism but it had also offered us an opportunity for incredible growth.

Hence the name Terouma or Terumah for that website.

Each week, everywhere in the world, the Jewish people read the same portion of the Torah, the Five Books of Moses in the Hebrew Bible. The Torah is divided into fifty-four portions that are called by the first relevant word of the text: this week we are reading the portion called Terumah.

In this portion, the Israelites are commanded to bring offerings to build the tabernacle, with a specific list of items that must be gifted to that purpose.

Gold, silver and copper; blue, purple and red-dyed wool; flax, goat hair, animal skins, wood, olive oil, spices, and gems.

I have always been very fond of lists, all sorts of list. That list gives me joy each time I read it! I can feel the divine presence in each item, so precious, so special.

My son has so many rituals that mean something for him only, and he has not been able to share their meaning in a clear manner, but I look at them the same way I look at the list of items brought to build the mishkan, the holy tabernacle.

Each child is unique. Each story of autism is unique. What I have written in the past, what I write today, and might write in the future always reflect only my views.

Because of this extra-ordinary son with no intelligible words or explanation on his modus operandi, I am the one who had to build a special space, not only for him and his family but hopefully for others who might find our perspective inspiring.

Please, share your stories too!

#BlogElul 5776 #ElulGram – Elul 14: Learn

learn_spikishMy older son was born on the severe end of the autistic spectrum. I am usually saying that he is “differently abled” than most of us because I have learned to notice his extraordinary abilities and that they have proven to be consistent through his twenty and something years of life so far.

Autism is often characterized as a puzzle, in the sense of a mystery, but it is not to those who are affected by it. Not only to the individuals who may or may not be “diagnosed” with autism but also to their closest allies, siblings, teachers and caregivers  (I put the word “diagnosed” in brackets because autism is certainly not a disease and the word “diagnosed” tend to imply it would be, so it is really misleading but for a better way to explain what I want to explain I will continue to use some of that annoying vocabulary and I apologize for doing so).

The real mystery is why we would be unable to understand or communicate with some people, just because we think we have a “superior” way of functioning when the reality is that we also have lots of deficiencies in the way we use our brains. We are just the dominant part of the population and we are used to communicating the way we do, we highly value speech and communication through words and elaborate expressions of our thoughts and emotions. So when someone is properly handicapped in those domains we tend to see them as disabled, the same way we value being able to hear or see or run and someone whose hearing, sight or motion is impaired is considered by the majority as disabled when in reality everyone has different abilities and ways to adapt to how we function.

I certainly want everyone to understand the subtleties that make my son as able as anyone despite his disabilities: he is not less, and he certainly is more in many domains. Those domains might not be considered as functional in today’s world but I am ready to bet that in a couple of centuries or maybe less time, given how fast things are going if only we are willing to learn and adapt, they will be essential to life and his extraordinary skills will be needed and highly sought for the majority in society!

In our morning liturgy, there are a series of blessings that we repeat every day. Let me quote some of them in one of the many possible translations:

Thankfully, we offer praise to You, Adonai our God, Sovereign of the universe,

For bestowing the power to distinguish between day and night;

For creating us in Your image;

For giving us freedom;

/…/

For giving us the capacity to see;

/…/

I remember the first times I heard some of the readings from the High Holy Days liturgy in a prelude to the Sh’ma and couldn’t refrain myself from choking a little while reading them. I offer them here in English as they appear in The New Mahzor printed by Media Judaica, which we are not using anymore during our services and I have yet to see if this text that moves me so much is included:

 

Let us imagine a world without color, without regal red or leafy green, a world that bores the eye with gray.

Praise to You, Adonai, for all the colors in the rainbow, for eyes that are made for seeing, and for the beauty that “is its own excuse for being.”

Let us imagine a world without sound, a world where deathly silence covers the earth like a shroud.

Praise to You, Adonai, for words that speak to our minds, for songs that lift our spirits, and for all those souls who know how to listen.

Let us imagine a world without order, where no one can predict the length of the day or the flow of the tide. Imagine a universe where planets leave their orbits and soar like meteors through the heavens and where the law of gravity is repealed at random.

Praise to You, Adonai, for the marvelous order of nature, from stars in the sky to particles in the atom.

Let us imagine a world without love, a world in which the human spirit, incapable of caring, is locked in the prison of the self.

Praise to You, Adonai, for the capacity to feel happiness in another’s happiness and pain in another’s pain.

As the universe whispers of a oneness behind all that is, so the love in the human heart calls on people everywhere to unite in pursuit of those ideals that make us human.

As we sing of One God, we rejoice in the wonder of the universe and we pray for that day when all humanity will be one.

I will let you imagine what it has been like for someone born without some of those abilities we take for granted, ~ and could often forget to be thankful for, had our rituals not reminded us ~ to learn how to compensate to be seen as fully human and find their place among us, fully included as they should be.

 

This year, I have committed to a daily blog in English to participate in @imabima’s project of Elul. I will dedicate my endeavor for the רפואה שלמה complete healing of   מרדכי אלעזר בן חנה מרים (Mordechai ben Chanah).

If you are new to the series and would like to receive the daily blogs in your inbox, you may click on the link below to sign up

Yes, please send me an email when you publish a new blog post!

 

 

 

 

#BlogElul – Day 4 – Understand

Those days, when all of a sudden, things that used to work don’t. It is annoying. It can trigger a crisis when you have a child with autism. You just can’t get to the core of it. You have to go with the flow. Accept that you don’t understand. That it is useless to feel afraid, or frustrated, or scared, or angry. It just does not work. There is not much to understand. It goes back to accepting again. Accepting that understanding is not in reach for the moment. It is difficult but necessary.

Living within the realm of autism is living within the realm of very little to understand. I can see it in the questions that I always get around my son. People wonder how we communicate. They ask me to translate what he is saying. I don’t know how to answer to those questions. I communicate through channels that are different, that’s all.

We all like to understand. It lifts so much anxiety. It gives power. A sense of control. But understanding can be an illusion. We understand what we already know. What we have learned or studied. Understanding comes with practice and patience.lamp

Being the mom of a kid with ASD

 

My super power is I have patience beyond the limits of this world. Praised be it.

Never complain. The job comes with greater rewards than you can ever imagine. I would never trade my place with anyone else, don’t take me wrong. I have the most wonderful kid with autism that one can dream of and I enjoy the challenge. I hope he does to. It is not necessarily the easiest mom to have than to have me as a mom after all.

If once I am looking forward to vacation time, when it comes I am eager that school time comes back very soon. Taking one day at a time. Now you know where the title of my blog comes from.

 

Beauty Queen With Autism Vies For Miss America Title – Disability Scoop

See on Scoop.itDifferent is cool

Six months of perfecting her interviewing skills will be put to the test this week when Alexis Wineman steps before the judges in her quest to become the first Miss America with autism.

Otir‘s insight:

I had mentioned this article when it was published a couple days ago, and the story is getting more and more attention after Alexis was interviewed on Fox. Her chances are good, and I wish her well. Having a lovely spokeperson for autism can never hurt.

See on www.disabilityscoop.com

Miss America contestant’s brave admission: “I have autism.”

See on Scoop.itDifferent is cool

Autism may soon have a surprising new spokesperson: Alexis Wineman, an 18-year-old Montana woman who hopes to be crowned Miss America on Saturday night.More on Shine: Miss America Gets Real About Anorexia”Most people do not understand what autism…

Otir‘s insight:

This story, which I first spotted on a disability blog is getting traction as the final contest date is approaching.

I personally do really care for beauty contests, but I really hope this very beautiful – and determined – young lady wins the contest of Miss America and be a voice for autism cause. It is time to include adults with differences and accept them.

See on shine.yahoo.com