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Words Unspoken

Having a teenager on the autistic spectrum

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I pause, I sigh, I count to 10. Then, with a calmness that can be drawn only from my deepest insides, I answer. “It’s okay to say quarter to ten, even though your digital watch says 9:43.” My child looks on, listening, really trying to understand the nuances of life that I am trying to convey.

While shopping, a classmate of hers stops to chat with her. My daughter mumbles her reply, which leads to another “conversation.” Again I pause, I sigh, I count to 10. My calmness and patience are still there, albeit being tenuously held. “Honey, when someone says, ‘Hello, how are you?’ it’s polite to respond with eye contact, a smile and a ‘Fine, how are you?’”

I find myself reviewing these obvious (to me) rules with her frequentlyI find myself reviewing these obvious (to me) rules with her frequently. Our “conversations” have become almost a daily ritual. When someone smiles, you smile back. When someone looks sad, it’s nice to ask them if they are okay. If they don’t answer you, don’t press the issue. If two people are talking, it’s not appropriate for you to barge in on their conversation, unless of course one of them motions for you to join them. Things that come so easily for most children do not come so easily for my child. The confusing, murky world of interpersonal communication remains a puzzle that seems to have a perpetual missing piece.

When she was young, and social navigations were easier, she had friends. Never one to overly seek out others, she was content when her peers would enter into her domain. As I would observe her in the sandbox or on the monkey bars, she would watch the comings and goings of her peers, happy to talk to whoever was sharing her little corner at any given time. As she got older, and the rules became more complex and the expectations greater, things started to change.

When she was born, I found myself dreaming of her teenage years. Phones ringing, friends over, group study sessions, nosh eaten, along with giggles and whispers throughout the night. I imagined my feigned exasperation at the phone line being used all the time, as I would roll my eyes at my husband and mutter, “Oh, teenagers.” Instead, the phone remains silent, she studies alone, and the sleepovers are rare.

Being a rather social person myself, I spent many years struggling, prodding, coaxing, and at times overly pushing her to become something she was not. With each further retreat to her beloved world of books, I found myself dreaming up new ways to manufacture social situations to engage her in. I planned and invited the Shabbat guests, sleepover parties and the class Shabbat gatherings of my dreams. Only to have them end, all too frequently, in my disappointment and her confusion.

As my child got older, I have learned that she is who she is, and it is my job to help mold her into the person that she needs to become. It’s tricky, even painful, to let go of the dream. We went for evaluations, searching for a diagnosis, only to find that she falls in the murky world of no diagnosis. Meaning that she has some tendencies on the Asperger’s spectrum, but, in layman’s terms, she’s just not socially acute. “Falling on the spectrum” sounds much more colorful and happy than the reality.

I struggle to ignore the phone that doesn’t ringSo I explain about the time, the smiles and the expected social nuances. I struggle to ignore the phone that doesn’t ring. On Friday nights, when our Shabbat candles are lit, instead of disappointment that there is no one that she wants to meet with outside, I strive to appreciate her willingness to stay inside and read as she watches my sleeping baby, and I can take the other little ones out to play. I realize that I undervalued her intelligence that comes from being an avid reader. And I have taken for granted her amazing insight into people and their emotions—an insight that is honed by being an outsider looking in.

I often wonder and worry about how she will do as she gets older. Where will she fit in? But, for now, I help her as best I know how, love her and help her develop. I pool my resources of patience and understanding to calmly have our conversations, to help her learn, be aware and figure out her place. I can’t worry about the future right now; all I know is that she fits just right into my heart.

By Sima Yacknowitz
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Discussion (23)
May 18, 2012
heart
All I know is that she fits just right into my heart. Just beautiful, i have a son with autism i completely understand your feelings. i have two children one with autism, yet I'm completely humbled at my sons feet.
Anonymous
parkland, fl
floridafriendshipcircle.com
April 26, 2012
Different View (to the mother of a child with ADHD
I, while understand the mother's frustrations... I want to put a different perspective.
I am an OT student, who independently supports myself, with my whole life ahead of me. I just happen to have ADD and learn differently and thankgd have an extremely high IQ.
When someone sees someone who is a bit "different" than others...they tend to treat them differently. Firstly, people who have ADD or other learning issues are NOT different! They are gifted! True, there are times where it can get frustrating but it is a GIFT!
Stop treating your son differently. He will end up going extremely far in life.
Anonymous
NY
January 25, 2012
Lighten up, Mom and fly with it!
In a way, I have to snicker- there must be a million parents out there worrying about their kids refusing to read, study and make something of themselves.
What could be wrong with reading and learning? Butterflies emerge inevitably from their cocoons.
Anonymous
Kanata, ON
January 24, 2012
Revealing article
I have always felt resentful that my mother - a very social but insecure woman - kept pushing me to be like her. It felt like tlhere was something wrong with me. She couldn't lunderstand why I liked solitude so much. She assumed I was just hyper shy and would want to be social if I could - she felt sorry for me.

Her pushing me socially was terrifying, but to be fair I actually did become, over time, more confident in social situations which I am happy about.

She truly believed that to be happy one needed lots of friends and parties. She thought pushing me was the helpful thing to do. I understand and love her for that. Yet I wonder how more confident and happy I'd be if she'd just thought I was fine the way I was. Seeing pity in your mother's eyes lasts a lifetime.
cathy Fried
Toronto, Canada
January 20, 2012
the autism spectrum re above commentary
Those in our lives who posses such exquisite sensitivity, have a difficult time, because life is so often insupportably hard. And how we need them, these flowers, because they teach us deep lessons in sensitivity, as they do tremble at the fall of a sparrow! It is difficult to develop a thick skin if you are borne this way.

Deep empathy is such sensitivity.It has risks, being the perception of merger, as in a deep feeling we're ONE and merger itself can be a terrifying and yet ecstatic experience. That's why we have antipsychotics. A way of producing "boundaries".

Some schizophrenics have a distinct sense of being "controlled" as in mind control. And it could be, they are right, in that a question such as Why Did G_d Give Me Mental Illness seems to imply a Supreme Force, directing our lives. So it could be terrifying and equally an experience of great comfort, that is, if we see it as LOVING.

A lot to conTEMPLate, as Temple is to G_d.

I learned a lot from Temple Grandin, her life
ruth housman
marshfield hills, ma
January 19, 2012
my first parent
I took a journey and my own journey brings me to the realization there is certainly a Divine Parent watching over us. I think we are all on loan and deeply more related through Divine Parentage than we ever thought possible. The Family of Man.

Lone & Loan. Aurally same. The Be Longing has to be ultimately about this relationship and all Creation deeply belongs to G-d. So yes, we are on loan & we do return to the Source. To perceive the great Unity is to often perceive the One in all eyes. As ayes is to e yes is to Yes. It all deeply and so beautifully connects. A gold braid.

This is a profound sense of togetherness as if we are grapes on the one Divine grapevine.

What is apparent to some is not immediately A Parent to others.
ruth housman
marshfield, ma
January 19, 2012
Knowledge and Sensitivity Must Be in Tune!
Am I "insensitive" by criticising this mother? She thinks that "she knows" and she probably does know a lot more than her daughter. But, being a very sensitive person, I get a sense that the author is far less sensitive than her daughter. I remember how traumatic it was for me being called "honey." It still stays in my mind, more than 60 years later, how my "spiritual petals" closed soon someone reminded me in public that "it’s polite to respond with eye contact, a smile and a ‘Fine, how are you? Yes, the advice was both necessary and sound. But to an autistic human being, extremely sensitive, it was mortifying! It told her that she did something very wrong, socially speaking. It opened the "feared wound" and told her that she "is impolite and unredeemable! I recall that after such well-intentioned, necessary, and sound advices I became more autistic! It's a matter of extreme sensitivity. It is a warning to parents: be extremely sensitive in dealing with an extremely sensitive child!
desert voice
Cracow, Poland
January 19, 2012
On the Spectrum
I hate that diagnosis, didn't help me explain to teachers or parents why my son didn't understand the kids joking or teasing. And because my son went to public school not religious it was a horrible time for him of bullying because he was a bit different. All of the coaching and play acting was just lost to him as he didn't seem to understand what I meant for him to do. Then we had to add ADHD and Anxiety into the mix. So as I struggle through the dissapointment as well my heart goes out to you as well. He thankfully is in a school now for kids like himself, more accepting. I have accepted but he wants to be like the kids in the neighborhood and is disappointed when not invited to the bar mitzvahs. He just doesn't know how to fit in. It breaks your heart to see your child struggle through heart ache and dissapointment. Great article, thanks for letting me know I am not alone.
Judy
reisterstown, md
January 18, 2012
don't understand the whole issue...
is this condition....diagnosed through the way someone acts...because...if you have been around many children and people for that matter there are many types of personality disorders...anyway if you don't fit whats considered normal behavior...does that mean you have some type of condition....think it would help to be understanding..to all types of personality and be more concerned with values of goodness and kindness...
Anonymous
hallandale, FL
January 18, 2012
Your daughter will be all right, G-d willing
Bs"D You write very personally and honestly. I'm sorry that you struggled for so long until you figured out that what we have is what we have. We can help our children a great deal - within the parameters of what they are capable of and interested in. Letting go of a dream is a huge effort - whatever the dream was. You know, when you let go of the dream, so much weight falls off of your shoulders and your heart. And what you are left with is a reality that is within reach. We find out that we are human after all - and that we need to leave it to Hashem to figure out what is best. It can be enlivening - if we let go. We were never meant to fix everything and solve everything. We have to remember that Hashem is the third parent, and He never makes mistakes. Your daughter will be all right, G-d willing. No one is missing anything - this is just how Hashem wanted us to be, while we take care of our tasks in this world. You sound like a good Mom. Good luck!
yehudis feinstein
Tzfat, Israel
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