Confinement

Who better than a parent of an autistic individual would have been prepared for what has befallen the world in 2020?

Trust me.

I know how you feel. I know the panic. I know the overwhelm. I know the need for over preparation.

I know that we need extra planning. We need to overthink. To foresee each step ahead. To structure the day. To expect that all will go according to plan, and to pivot in a split second because it does not. And in the face of the turmoil to keep a straight face, a loving demeanor, an understanding of the other’s fears and anxieties.

I know.

I have been there.

I trained in full confinement since the day my first-born was diagnosed with “moderate” autism, back in 1998. I had to adapt to a new “not-normal” and to live through social distancing not by choice to preserve our health or our loved ones’ health or the world’s health but because that is the nature of the beast when you are thrown into a world that places you in the “different” category.

Today, everyone is in the pit.

It is amazing to see.

It feels so surreal to many of you, and to many others, it feels scary like hell with thoughts of doom racing through your head and probably paralyzing ideas that you can’t survive such drastic isolation from others while you are quarantined in your own home with your loved ones or maybe even with your mother-in-law, who knows.

It is not doom.
It is not doomsday. It is a pandemic. It is new to most of us because this might be the first time we have to shelter in place with the resources at hand.

These resources were already prepared before we even knew it.
If you are reading these words that I post online, it is because the internet connects all of us. Even when we are separated by oceans, mountains and by time differences.
Technology has brought us immediate access to those we trust for wisdom, knowledge, information, inspiration. Solidarity springs like the birds who are ready to welcome the new season. Everyone is ready to offer a virtual hand through their shares.

This might be an extraordinary time in our lives and it will change our world for the better if we choose to react with our best selves.

When I started my first blog – in French – I chose to name it “One Day @ A Time” for a good reason: I was living a situation that was so overwhelming that I could only take one day at a time, each day I was “surviving” felt like the best accomplishment I could account for. I was proud of small steps, I was celebrating menial feats, I was immensely grateful every minute of every day because each of them was a treasure, one that kept giving, I had never imagined I was that strong and determined, I had never envisioned I could take in what I was taking in.

And yet I did.

Not alone.
Because I had a community, actually many communities, too many to even list them here without losing track. They know who they are. They are still in my life and smiling at these words. They know how grateful I am to them. They know the love we have shared at each step that we walked together, holding hands on the long and difficult path.

Today, you can have what I had then.

Communities are all there. You are part of them. Knowledge and wisdom are flowing in ways that we would have not imagined twenty years ago.

Our children are so much smarter than we were, their creative minds are bursting with ideas and joy, do not forget to celebrate them for how they will teach you news ways. They have not known the limitations we impose on our feelings of doom because their doom is at the end of the hour if their promised moment of delight is removed from them, not next year. They take one day at a time because this is all they have and they are so good at making the best of each hour.

Pay attention to what they say. How they say it. Their emotions. How quickly they recover. How resilient they are.

Even if you feel that confinement is a catastrophe, remember that it is just a moment in your life. One moment.
There are no “but”, there are “and”… and this moment shall pass as well.

I wish you all to be able to share each moment with joy and love, the same I have always wanted to do and known that it has taken me to this day, with faith and hope that all is good because honestly, it is.

Elul is back – Elul 1: Decide

The Jewish month of Elul is dedicated to cheshbon hanefesh, an accounting of our soul.

As we prepare for the new season, new beginnings, it is a very healthy habit to increase our sense of awareness.

The weeks leading up to Rosh Hashana, the Jewish new year, are a time of introspection.

This is a time for inspiration.

A time to find meaning in our day to day lives.

You can decide at any time to examine how your life is going for you or you can decide this is the perfect opportunity to do it because the energy of the season will help you, motivate you, inspire you.

How did I do over this past year?
Where could I have done better?
What lessons can I learn from my own life in the past year?


אַחַת שָׁאַלְתִּי מֵאֵת ה’ אוֹתָהּ אֲבַקֵּשׁ שִׁבְתִּי בְּבֵית ה’ כָּל יְמֵי חַיַּי

One thing I ask of Adonai, for this do I yearn: to dwell in the house of Adonai all the days of my life

Psalm 27:4

This Psalm is recited from the beginning of Elul until the end of Sukkot, a season of asking questions, of seeking for oneself. The High Holy Days are a personal time – a time when we reflect on our universal human condition.

Wishing you all a wonderful month of Elul!

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!

This Christmas Eve

Each end of the calendar year, I like to take stock of my professional activities. I like to start planning for the next year as well.
 
Looking at this blog, I note how little I have published this past year.
 
I have always loved blogging.
 
To share with an audience of faithful readers about issues that matter most to me.
 
I may have the hope it would rally to my views of the world.
 
To invite someone with a different point of view to consider mine and discover a new place.
 
But I have never tried to convince or create any mass movement for my personal ideas.
 
My activism has always remained very confidential.
 
I discovered that communication is not – what a paradox! – my strongest suit.
 
It led me to feelings of being misunderstood often. To feelings of loneliness and solitude.
 
I like to tell stories. I don’t actually like to explain things. Yet I always force myself to explain things out of fear of creating confusion. Confusion would upset my sense of order and strive for perfection.
 
Such effort costs me time and energy, and both deserve rewards.
 
 
Could it be the reason why I stopped blogging in 2018? I barely shared anything on social media as well. I concentrated all my time elsewhere that was not public writing.
 
 
When I was a student, I dreamed of being an interpreter and I studied foreign languages.
 
When I was a child, I dreamed of being an actress. Instead, I played the games my gender, origins, culture, family, or country expected me to play. I have been pretty good at it.
 
I dreamed of a career in which I would have created a safe haven for people to come to resource and learn how to grow their talents.
 
Instead, I had two children.
Each became in their own way my teachers of new very foreign languages.
 
This year, Christmas week offers me a haven of tranquility that I would like to taste.
 
I do not celebrate the holiday so I enjoy the peaceful break for myself.
 
Looking back at the year.
 
I am trying to remember all those who left this world this past year. It is leaving holes in my heart and nostalgia for the memories we had together.
 
I am trying to give the benefit of the doubt to failures and difficulties that I encountered. To let them be springboards to create better results next time I try. The lessons they teach bring wisdom once we repeat and practice the exercises and persist.
 
Persistence is key.
 
This blog is still here!
 
Even though it lacked consistency I hope it can still play its role, for me, as well as for its visitors.
 
To all, I wish a Merry Christmas and a happy New Year. May we all have many opportunities to spend some time together. I look forward to this miracle of interconnectivity.

What to say and what not to say about suicide?

Dear all friends, followers and loving fans,

I have been widely absent from all sorts of social media presence lately. I haven’t posted except for the occasional signs that I am alive and paying attention to the world, mainly in private settings.

On the occasion of the tragic death of celebrities to suicide, I feel bombarded once again by a renewed interest from those who received the news with shock and dismay and struggle to understand the underlying cause of such horrible way to die.

Among what I can read, there are more triggering messages about mental health, responsibility to others when you are in the public eye than I can take without adding my own voice to the noise around suicide.

I can’t take anyone’s blame on a deceased person for having left the world as if such departure was their conscious will. I can’t listen to angry messages without receiving a hurtful blow as if the anger was a personal attack, not only on myself but also on the one who expresses an angry message: I can feel the utmost fear and pain that the news inflicted on them and if anger is the only way to express such pain, I resent that it takes the form of a hurtful attack on anyone.

There are healthy ways to process anger and it should always be in the form of action.

I certainly feel angry myself and this may be the very reason why I am writing this and coming out of my silent place on social media on this occasion.

Most of you know that I have been open about my struggles and life circumstances.

I have no suicidal ideation and I know that I am lucky that it has never happened to me. I would not be here to share those words with you if I had not been lucky when I “lost” it. I have a very clear recollection of the chains of events – on several separate occasions – that protected me. Each of those occasions, I took as a lesson and a guide on how to keep protecting the life I have been given, the gifts I have been granted, and the responsibility I have agreed to take upon myself to continue growing and fulfilling my mission on earth… until it is the end of it, and it is not my human decision.

Words are powerful: they can hurt or they can heal.

I cringe and ache when I read messages that convey misunderstanding, judgments and sometimes extremely toxic condemnations that those who silently suffer may receive as an additional confirmation that they should not disclose anything about themselves because it is at best useless and at worst dangerous.

Each of us has a dark area of unknown places: there is a window that can be accessed, and a window that can’t. Personal growth should aim at making the inaccessible window the smallest possible so that it is not filling with demons or unresolved pains and conflicts that threaten to spill poison or despair into our lives.

There are many different paths to such growth. Not one way fits all. It is the same with all who succumb to the darkness. Not all of them have suffered for the same cause nor would have been helped the same way, or helping themselves in the same fashion as the other, or as myself.

What responsibility?

Today, the only message I want to convey about responsibility is that we are each of us individually responsible for what we put outside of ourselves, what we publish as well as what we say to others, or about others. It is so important to avoid blame and condemnation. It is so necessary to make sure that what we decide to share is coming from a place of love and not a place of fear.

When we harbor anger at a news that shocked us, we can recognize the anger without using it to distance ourselves from what has happened. Suicide is not contagious but the words that are spoken around the suicide of a well-known victim of suicide have the unfortunate power to kill others as well.

I would dream of a world where each of us watches their words carefully so that they can bring light and love all the time. It has been a dream for a long time and if I do not contribute to my own dream, I have failed to take action that will ease the feelings of pain and anger that I may be experiencing when something tragic happens to my fellow human.

What to do

I do not have a recipe to give you about what to say or what not to say. I have immense respect and trust that you can measure your words by yourself. As for action, there are great organizations who dedicate multiple resources and countless ways to help make this world a kinder and safer place for all. Let us join them in their efforts and vow to repair the world and grow our hearts bigger with love for all.

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Giving Thanks

For our fragile planet earth,
its times and tides,
its sunsets and seasons,
its vitality and vegetables;

For the joy of human life,
its wonders and surprises,
its hopes and achievements;

For human community,
our common past and future hopes,
our oneness transcending all separation,
our capacity to work for peace and justice in the midst of hostility and oppression;

For high hopes and noble causes,
for faith without fanaticism,
for an understanding of views not shared;

For all who have labored and suffered for a fairer world,
who have lived so that others might live in dignity and freedom:
We pray that we may live, not by our fears, but by our hopes.
Modim Anachnu Lach—For all this and so much more, we give thanks.

From the Mishkan Tefilah – the Jewish Reform Prayer Book

 

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Three Brothers

Tombe_Mayer_Alger-min

 

Every year, on Veterans Day, I am reminded of the WWI fallen from my own family.

This is because, in France, the day is dedicated to celebrating the end of WWI with the signature of the armistice that day.

The picture on this post shows a tombstone in Algiers Jewish Cemetary, the only picture I have of a place I never could visit.
My mother was born there. The tomb is the family’s plot.

These are her mother’s brothers who died during the war ~ and a fourth brother also died in WWII.

My mother’s grandfather ~ the father of these brothers if you follow ~ had been a Colonel in the French Army, at the same time as the famous Captain Dreyfus.

I told a little bit in this post, too.

Jews were very patriotic always, despite antisemitism. It was an honor to send his own sons to serve the country. They paid the ultimate price of this patriotism in what has been dubbed later the worst terrible war and a “butchery”, which it was.

War is ugly.

There is no pretty war.

Veterans who are lucky to come back from wars may have come unarmed in their bodies but their soul is scarred. I cannot even fathom how they can deal with their feelings after they endured and experienced what they did.

We owe them more than just remembering to thank them for their service with gratitude. We do. But we also owe them care and employment and mental health care as a country, not as a charity.

When I remember my own great-uncles whom I never got a chance to meet and who never got a chance to give birth to sons or daughters who would talk about their stories, I also remember their mother, Rachel, my great-grandmother, and Cecile, my mother’s mother who had been the one to share with me about her beloved brothers.

I remember most what was a painful sadness lingering year after year, so strong that I was able to carry it over with me.

I remember the picture of Rachel wearing the signs of her bereavement, that she would never lose until her own death. I can’t fathom the kind of strength you need to muster once you have buried your own sons, one after the other.

My grandmother gave birth to my uncle a few days after her brother was killed, two days before the armistice was signed Nov 11, 1918.

 

My uncle was named after the young fallen soldier.

 
 

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The Month of Gratitude

November is #noticeandsharethegood Month!
I have two sons.
The older – is 22. The younger is 20.
The older is severely autistic. He has no conversational language.
At times he goes above his brother’s head with his own bent head, in a loving gesture of awe, in his own fashion to express tenderness.
That the younger young man never pushes him back nor expresses annoyance is beautiful. Simply beautiful.
I cannot explain how grateful I am for the tender relationship between those two…

Give thanks

There is a tradition in Judaism that we give thanks as soon as we open our eyes when we wake up in the morning.

We are given many opportunities to give thanks from that moment on during the day, and if we can we are urged to do it at least a hundred times each day.

Looking around and finding those opportunities is an exercise in mental health, with more benefits than anti-depressants.

When darkness is growing

With November, in the Northern hemisphere, trees are becoming bare.

Daylight is decreasing.

Soon we feel like we don’t see the sun at all.

It is time to vote in the United States.

A year ago, it did not end well for all those who had not seen it come. Authoritarianism is casting such an ominous shadow that it feels difficult to give thanks for what is happening in the world.

To look for the beauty and the goodness.

To find the helpers.

To keep hope and keep the battle and keep smiling.

Keep voicing your opinions

We can disagree on so many things and still have a civil discussion.

There are so many ways to look at everything.

Just be patient and see the tenderness in a gesture that may be annoying.

Like my son does over and over out of his own love for his brother.

Always see the good in everything may bring surprises. The light will come back.

In the meantime, let us all prepare for the beautiful holiday of Thanksgiving. What will you bring to the table? Let me know!

 

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Survival in A Tough Time

Coffee Shop Rabbi (a.k.a. Rabbi Ruth Adar) expressed feelings and ideas I share in this post I re-post on my own blog today.

I wish I had written what she wrote: her words mirror those that struggled to form in my own overwhelmed mind.

When the only thought that comes to mind is “disaster”, I want to stay strong and helpful. I want to use my personal powers of being alive and able.

Doing one good deed at a time.

Even if that one deed is to continue publishing one blog at a time.

Coffee Shop Rabbi

Image: Sonoma, CA, in better times. (jessebridgewater/pixabay)

Hurricanes. Wildfires.

A little over a week ago we said the Unetaneh Tokef prayer, “Who by water and who by fire,” expressing the fact that we simply do not know what the future will bring each person. And since then, we have seen so many bad things: the aftermath of hurricane and floods in Texas, Florida, and Puerto Rico, and the fires in the West, especially in Northern California this week.

The news from Washington is deeply upsetting to many of us. Who would have thought we’d see a President of the United States have a name-calling match on Twitter with one of the leaders of his own party? Who would have thought we’d see a name-calling game of nuclear chicken play out on Twitter between heads of state?

I have not posted for a week. Some of that was a…

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