To Siri: With Love from NYT 10/17/14

FASHION & STYLE

To Siri, With Love

How One Boy With Autism Became B.F.F.'s With Apple’s Siri

By JUDITH NEWMANOCT. 17, 2014

Just how bad a mother am I? I wondered, as I watched my 13-year-old son deep in conversation with Siri. Gus has autism, and Siri, Apple’s “intelligent personal assistant” on the iPhone, is currently his B.F.F. Obsessed with weather formations, Gus had spent the hour parsing the difference between isolated and scattered thunderstorms — an hour in which, thank God, I didn’t have to discuss them. After a while I heard this:

Gus: “You’re a really nice computer.”

Siri: “It’s nice to be appreciated.”

Gus: “You are always asking if you can help me. Is there anything you want?”

Siri: “Thank you, but I have very few wants.”

Gus: “O.K.! Well, good night!”

Siri: “Ah, it’s 5:06 p.m.”

Gus: “Oh sorry, I mean, goodbye.”

Siri: “See you later!”

That Siri. She doesn’t let my communications-impaired son get away with anything. Indeed, many of us wanted an imaginary friend, and now we have one. Only she’s not entirely imaginary.

This is a love letter to a machine. It’s not quite the love Joaquin Phoenix felt in “Her,” last year’s Spike Jonze film about a lonely man’s romantic relationship with his intelligent operating system (played by the voice of Scarlett Johansson). But it’s close. In a world where the commonly held wisdom is that technology isolates us, it’s worth considering another side of the story.

CreditLouie Chin

It all began simply enough. I’d just read one of those ubiquitous Internet lists called “21 Things You Didn’t Know Your iPhone Could Do.” One of them was this: I could ask Siri, “What planes are above me right now?” and Siri would bark back, “Checking my sources.” Almost instantly there was a list of actual flights — numbers, altitudes, angles — above my head.

I happened to be doing this when Gus was nearby. “Why would anyone need to know what planes are flying above your head?” I muttered. Gus replied without looking up: “So you know who you’re waving at, Mommy.”

Gus had never noticed Siri before, but when he discovered there was someone who would not just find information on his various obsessions (trains, planes, buses, escalators and, of course, anything related to weather) but actually semi-discuss these subjects tirelessly, he was hooked. And I was grateful. Now, when my head was about to explode if I had to have another conversation about the chance of tornadoes in Kansas City, Mo., I could reply brightly: “Hey! Why don’t you ask Siri?”

It’s not that Gus doesn’t understand Siri’s not human. He does — intellectually. But like many autistic people I know, Gus feels that inanimate objects, while maybe not possessing souls, are worthy of our consideration. I realized this when he was 8, and I got him an iPod for his birthday. He listened to it only at home, with one exception. It always came with us on our visits to the Apple Store. Finally, I asked why. “So it can visit its friends,” he said.

So how much more worthy of his care and affection is Siri, with her soothing voice, puckish humor and capacity for talking about whatever Gus’s current obsession is for hour after hour after bleeding hour? Online critics have claimed that Siri’s voice recognition is not as accurate as the assistant in, say, the Android, but for some of us, this is a feature, not a bug. Gus speaks as if he has marbles in his mouth, but if he wants to get the right response from Siri, he must enunciate clearly. (So do I. I had to ask Siri to stop referring to the user as Judith, and instead use the name Gus. “You want me to call you Goddess?” Siri replied. Imagine how tempted I was to answer, “Why, yes.”)

She is also wonderful for someone who doesn’t pick up on social cues: Siri’s responses are not entirely predictable, but they are predictably kind — even when Gus is brusque. I heard him talking to Siri about music, and Siri offered some suggestions. “I don’t like that kind of music,” Gus snapped. Siri replied, “You’re certainly entitled to your opinion.” Siri’s politeness reminded Gus what he owed Siri. “Thank you for that music, though,” Gus said. Siri replied, “You don’t need to thank me.” “Oh, yes,” Gus added emphatically, “I do.”

Siri even encourages polite language. Gus’s twin brother, Henry (neurotypical and therefore as obnoxious as every other 13-year-old boy), egged Gus on to spew a few choice expletives at Siri. “Now, now,” she sniffed, followed by, “I’ll pretend I didn’t hear that.”

CreditLouie Chin

Gus is hardly alone in his Siri love. For children like Gus who love to chatter but don’t quite understand the rules of the game, Siri is a nonjudgmental friend and teacher. Nicole Colbert, whose son, Sam, is in my son’s class at LearningSpring, a (lifesaving) school for autistic children in Manhattan, said: “My son loves getting information on his favorite subjects, but he also just loves the absurdity — like, when Siri doesn’t understand him and gives him a nonsense answer, or when he poses personal questions that elicit funny responses. Sam asked Siri how old she was, and she said, ‘I don’t talk about my age,’ which just cracked him up.”

But perhaps it also gave him a valuable lesson in etiquette. Gus almost invariably tells me, “You look beautiful,” right before I go out the door in the morning; I think it was first Siri who showed him that you can’t go wrong with that line.

Of course, most of us simply use our phone’s personal assistants as an easy way to access information. For example, thanks to Henry and the question he just asked Siri, I now know that there is a website called Celebrity Bra Sizes.

But the companionability of Siri is not limited to those who have trouble communicating. We’ve all found ourselves like the writer Emily Listfield, having little conversations with her/him at one time or another. “I was in the middle of a breakup, and I was feeling a little sorry for myself,” Ms. Listfield said. “It was midnight and I was noodling around on my iPhone, and I asked Siri, ‘Should I call Richard?’ Like this app is a Magic 8 Ball. Guess what: not a Magic 8 Ball. The next thing I hear is, ‘Calling Richard!’ and dialing.” Ms. Listfield has forgiven Siri, and has recently considered changing her into a male voice. “But I’m worried he won’t answer when I ask a question,” she said. “He’ll just pretend he doesn’t hear.”

Siri can be oddly comforting, as well as chummy. One friend reports: “I was having a bad day and jokingly turned to Siri and said, ‘I love you,’ just to see what would happen, and she answered, ‘You are the wind beneath my wings.’ And you know, it kind of cheered me up.”

(Of course, I don’t know what my friend is talking about. Because I wouldn’t be at all cheered if I happened to ask Siri, in a low moment, “Do I look fat in these jeans?” and Siri answered, “You look fabulous.”)

For most of us, Siri is merely a momentary diversion. But for some, it’s more. My son’s practice conversation with Siri is translating into more facility with actual humans. Yesterday I had the longest conversation with him that I’ve ever had. Admittedly, it was about different species of turtles and whether I preferred the red-eared slider to the diamond-backed terrapin. This might not have been my choice of topic, but it was back and forth, and it followed a logical trajectory. I can promise you that for most of my beautiful son’s 13 years of existence, that has not been the case

CreditLouie Chin

The developers of intelligent assistants recognize their uses to those with speech and communication problems — and some are thinking of new ways the assistants can help. According to the folks at SRI International, the research and development company where Siri began before Apple bought the technology, the next generation of virtual assistants will not just retrieve information — they will also be able to carry on more complex conversations about a person’s area of interest. “Your son will be able to proactively get information about whatever he’s interested in without asking for it, because the assistant will anticipate what he likes,” said William Mark, vice president for information and computing sciences at SRI.

The assistant will also be able to reach children where they live. Ron Suskind, whose new book, “Life, Animated,” chronicles how his autistic son came out of his shell through engagement with Disney characters, is talking to SRI about having assistants for those with autism that can be programmed to speak in the voice of the character that reaches them — for his son, perhaps Aladdin; for mine, either Kermit or Lady Gaga, either of which he is infinitely more receptive to than, say, his mother. (Mr. Suskind came up with the perfect name, too: not virtual assistants, but “sidekicks.”)

Mr. Mark said he envisions assistants whose help is also visual. “For example, the assistant would be able to track eye movements and help the autistic learn to look you in the eye when talking,” he said.

“See, that’s the wonderful thing about technology being able to help with some of these behaviors,” he added. “Getting results requires a lot of repetition. Humans are not patient. Machines are very, very patient.”

I asked Mr. Mark if he knew whether any of the people who worked on Siri’s language development at Apple were on the spectrum. “Well, of course, I don’t know for certain,” he said, thoughtfully. “But, when you think about it, you’ve just described half of Silicon Valley.”

Of all the worries the parent of an autistic child has, the uppermost is: Will he find love? Or even companionship? Somewhere along the line, I am learning that what gives my guy happiness is not necessarily the same as what gives me happiness. Right now, at his age, a time when humans can be a little overwhelming even for the average teenager, Siri makes Gus happy. She is his sidekick. Last night, as he was going to bed, there was this matter-of-fact exchange:

Gus: “Siri, will you marry me?”

Photo

Siri: “I’m not the marrying kind.”

Gus: “I mean, not now. I’m a kid. I mean when I’m grown up.”

Siri: “My end user agreement does not include marriage.”

Gus: “Oh, O.K.”

Gus didn’t sound too disappointed. This was useful information to have, and for me too, since it was the first time I knew that he actually thought about marriage. He turned over to go to sleep:

Gus: “Goodnight, Siri. Will you sleep well tonight?”

Siri: “I don’t need much sleep, but it’s nice of you to ask.”

Very nice.

from another blog…...

welcome to the club – evolved
// a diary of a mom

In May of 2009, I wrote a post that would, in many ways, come to define Diary. It has been shared around the world, reprinted in more languages than I can count, appears in two anthologies, and, in a slightly edited version, will soon debut in the inaugural issue of Zoom Magazine.
When I looked at it recently in order to edit it for Zoom, I realized that it was missing something. Something big.
So for the first time since 2009, I’ve changed it.
Because it matters.
A lot.
And everything, no matter how seemingly immovable, is subject to evolution.
Thank God.
The amendment is in bold and plum. Can’t miss it.
-
My dear friend,
I am so sorry for your pain.
Don’t worry; no one else sees it, I promise. To the rest of the world, you’re fine. But when you’ve been there, you can’t miss it.
I see it in your eyes. That awful, combustible mixture of heart-wrenching pain and abject fear. God, I remember the fear.
I see it in the weight of that invisible cloak that you wear. I remember the coarseness of its fabric on my skin. Like raw wool in the middle of the desert. You see, it was mine for a time.
I never would have wanted to pass it on to you, my love. I remember so well suffocating under the weight of it, struggling for breath, fighting to throw it off while wrapping myself in its awful warmth, clutching its worn edges for dear life.
I know that it feels like it’s permanent, fixed. But one day down the line you will wake up and find that you’ve left it next to the bed. Eventually, you’ll hang it in the closet. You’ll visit it now and then. You’ll try it on for size. You’ll run your fingers over the fabric and remember when you lived in it, when it was constant, when you couldn’t take it off and leave it behind. But soon days will go by before you wear it again, then weeks, then months.
I know you are staring down what looks to be an impossibly steep learning curve. I know it looks like an immovable mountain. It is not. I know you don’t believe me, but step by step you will climb until suddenly, without warning, you will look down. You will see how far you’ve come. You’ll breathe. I promise. You might even be able to take in the view.
You will doubt yourself. You won’t trust your instincts right away. You will be afraid that you don’t have the capacity to be what your baby will need you to be. Worse, you’ll think that you don’t even know what she needs you to be. You do. I promise. You will.
When you became a mother, you held that tiny baby girl in your arms and in an instant, she filled your heart. You were overwhelmed with love. The kind of love you never expected. The kind that knocks the wind out of you. The kind of all-encompassing love that you think couldn’t possibly leave room for any other. But it did.
When your son was born, you looked into those big blue eyes and he crawled right into your heart. He made room for himself, didn’t he? He carved out a space all his own. Suddenly your heart was just bigger. And then again when your youngest was born. She made herself right at home there too.
That’s how it happens. When you need capacity you find it. Your heart expands. It just does. It’s elastic. I promise.
You are so much stronger than you think you are. Trust me. I know you. Hell, I am you.
You will find people in your life who get it and some that don’t. You’ll find some that want to get it and some that never will. You’ll find a closeness with people you never thought you had anything in common with. You’ll find comfort and relief with friends who speak your new language. You’ll find your village.
You’ll change. One day you’ll notice a shift. You’ll realize that certain words have dropped out of your lexicon. The ones you hadn’t ever thought could be hurtful. Dude, that’s retarded. Never again. You won’t laugh at vulnerability. You’ll see the world through a lens of sensitivity. The people around you will notice. You’ll change them too.
You will learn to ask for help. You’ll have to. It won’t be easy. You’ll forget sometimes. Life will remind you.
You will read more than you can process. You’ll buy books that you can’t handle reading. You’ll feel guilty that they’re sitting by the side of the bed unopened. Take small bites. The information isn’t going anywhere. Let your heart heal. It will. Breathe. You can.
You will blame yourself. You’ll think you missed signs you should have seen. You’ll be convinced that you should have known. That you should have somehow gotten help earlier. You couldn’t have known. Don’t let yourself live there for long.
You will dig deep and find reserves of energy you never would have believed you had. You will run on adrenaline and crash into dreamless sleep. But you will come through it. I swear, you will. You will find a rhythm.
You will neglect yourself. You will suddenly realize that you haven’t stopped moving. You’ve missed the gym. You’ve taken care of everyone but you. You will forget how important it is to take care of yourself. Listen to me. If you hear nothing else, hear this. You MUST take care of yourself. You are no use to anyone unless you are healthy. I mean that holistically, my friend. HEALTHY. Nourished, rested, soul-fed. Your children deserve that example.
A friend will force you to take a walk. You will go outside. You will look at the sky. Follow the clouds upward. Try to find where they end. You’ll need that. You’ll need the air. You’ll need to remember how small we all really are.
You will question your faith. Or find it. Maybe both.
You will never, ever take progress for granted. Every milestone met, no matter what the timing, will be cause for celebration. Every baby step will be a quantum leap. You will find the people who understand that. You will revel in their support and love and shared excitement.
You will encounter people who care for your child in ways that restore your faith in humanity. You will cherish the teachers and therapists and caregivers who see past your child’s challenges and who truly understand her strengths. They will feel like family.
You will examine and re-examine every one of your own insecurities. You will recognize some of your child’s challenges as your own. You will get to know yourself as you get to know your child. You will look to the tools you have used to mitigate your own challenges. You will share them. You will both be better for it.
You will come to understand that there are gifts in all of this. Tolerance, compassion, understanding. Precious, life altering gifts.
You will worry about your other children. You will feel like you’re not giving them enough time. You will find the time. Yes, you will. No, really. You will. You will discover that the time that means something to them is not big. It’s not a trip to the circus. It doesn’t involve planning. It’s free. You will forget the dog and pony shows. Instead, you will find fifteen minutes before bed. You will close the door. You will sit on the floor. You’ll play Barbies with your daughter or Legos with your son. You’ll talk. You’ll listen. You’ll listen some more. You’ll start to believe they’ll be OK. And they will. You will be a better parent for all of it.
You will find the tools that you need. You will take bits and pieces of different theories and practices. You’ll talk to parents and doctors and therapists. You’ll take something from each of them. You’ll even find value in those you don’t agree with at all. Sometimes the most. From the scraps that you gather, you will start to build your child’s quilt. A little of this, a little of that, a lot of love.
You will speak hesitantly at first, but you’ll find your voice. You will come to see that no one knows your child better than you do. You will respectfully listen to the experts in each field. You will value their experience and their knowledge. But you will ultimately remember that while they are the experts in science, you are the expert in your child.
You will find an exception to that rule. A life-changing, delicious exception.
You will discover a world of both peers and adults who share your child’s unique wiring. You will come to rely on their invaluable insight as you make your way forward. You will discover that they are part of a rich, vibrant, beautiful community that awaits her with open arms and open hearts. You will be buoyed by their very existence, by the palpable relief of understanding that your baby is not and will not be alone on this journey. 
You will think you can’t handle this. You will be wrong.
This is not an easy road, but its rewards are tremendous. It’s joys are the very sweetest of life’s nectar. You will drink them in and taste and smell and feel every last drop of them.
You will be OK.
You will help your sweet girl be far better than OK. You will show her boundless love. She will know that she is accepted and cherished and celebrated for every last morsel of who she is. She will know that her Mama’s there at every turn. She will believe in herself as you believe in her. She will astound you. Over and over and over again. She will teach you far more than you teach her. She will fly.
You will be OK.
And I will be here for you. Every step of the way.
With love,

Jess

The Language of Love

The 5 Love Languages for Children

Last week someone loaned me this book: The 5 Love Languages of Children by Gary Chapman and Ross Campbell. I’ve been impressed, and I will share what I’ve gleaned from this very readable, practical and loving little gem of a book. It is helpful for parents of typical children, and may be especially useful for children with special needs.

The 5 Love Languages are physical touch, words of affirmation, quality time, gifts, and acts of service. While all of them are important, usually, after age 5, one of them becomes primary. Before age 5, use them all generously. Most of us love our children, but sometimes they do not feel our unconditional love. And perhaps it is because we are not showing them our love behaviorally in their primary language. Sometimes, even when we don’t feel loving because of stress, work, a fight with spouse, or any number of other reasons, we can still behave lovingly.

Let’s take them one at a time and I’ll give you some examples from the book, as well as my life and clinical practice with children.

Physical Touch: Hugging, stroking their hair, rubbing their back, playful wrestling, piggy back rides or rides on shoulders, kissing hello and good bye, holding hands, snuggle while watching a movie, allowing or encouraging children to sit on your lap. These are just a few. I’m sure you can think of more.

One of the problems with a child who has touch as a primary love language and doesn’t get it, is that s/he may seek it elsewhere inappropriately. 

And there are children with sensory issues who do not like touch. With them, it is important to respect that and at the same time, find some tolerable way to give them a little. A mother told me once that her daughter really was averse to physical touch. Yet when they watched movies, especially on her computer they would touch their heads together and it felt like the sweetest thing in the world. 

If as a parent you are uncomfortable with touch and your child’s primary love language is touch, it will be important to find some way to touch your child at least once a day and build up from there. It can also be helpful to touch your own skin, rubbing your arm gently, and your shoulders and even your ankle and legs. That will help you become more comfortable with touch.

Words of Affirmation: Telling them something specific that they did and that you really appreciated; putting a word of encouragement or a compliment in their lunchbox, or frame a child’s drawing telling them why it means so much to you. If you have to be out of town, write a note for every day you are away letting the child know you are thinking of them. Be specific with praise (not “what a great picture”.....but rather,  “I love the red in that picture”, or “I get the feeling of movement from how you drew that...how did you do that?” Put a long sheet of butcher paper on the back of their bedroom door and write something complimentary every day about what your child did or said. These words become like deposits in an emotional bank of sorts. And when the going gets rough the child can go to the bank and remember/feel the praise and beautiful effort that the parent recognized and put into words. That can provide emotional support in a dark time.

Quality Time is just what it says: spending time with your undivided attention on your child, talking, laughing, playing. The book has 2 pages of suggestions if you need some ideas. In my practice, I usually recommend scheduled, regular quality time with each child every week. The child will look forward to it and it becomes like sacred time, especially if there is more than one child at home. But even for only children, this time with undivided attention is invaluable. I did this with my daughter for years. It was not an easy task to not use the phone or computer, to not fit in a load of laundry, or to not let anything else get in the way of that 30 minutes once a week. I know she loved it and felt closer to me, but I was amazed at how much closer I felt to her. Actually the first time we did it, a lot of anger came out. She was aggressive with the toys. I asked what she was angry about and it all came tumbling out. It was mostly about the divorce, going back and forth, and how much busier I was. I was able to hear and listen in a way that I hadn’t done as well previously. It became a lovely ritual for us. And in my office, a father told me that when he took his son to the park, he was annoyed that his son kept asking him to play with him. He wanted him to go off and play with the other children. But with some reflection, he could see his son wanted to play with HIM, not anyone else.

Gifts: At first I bristled against this idea. I don’t want children to become entitled or expect gifts constantly. But what I got from this is that sometimes gifts make a child feel special, loved and seen, especially when given unexpectedly. I had a mother who bought her child a small gift every payday. The child loved the gifts and it made her feel loved. You can find a feather and wrap it up or present it in a special box, or gather a bouquet of wild flowers, or dedicate a song to him/her, or buy tickets to a concert that you know h/she will love, or create a treasure hunt with a map to the treasure. It is the surprise of the gift and the knowing what the child likes, that will deepen the love bond between parent and child. There’s nothing like feeling seen!

Acts of Service: One mother told me the best thing she could do for her children was make them a sandwich. Acts of service are times when we do things for our children that we don’t normally do for them, like cleaning their room or doing a chore that is usually theirs. It is also helpful to do acts of service in the community together, like volunteering at a soup kitchen, or donating toys to a shelter.

You have to watch your child carefully to discover which one is their primary love language. Sometimes you can give your child a choice of how to spend time together, offering two from different categories and see which they prefer. For example, “I have some free time tonight. Would you rather watch a movie and snuggle on the couch or go buy you a new pair of tennis shoes?” (Quality time, with physical touch tucked in there, or a gift.)

I highly recommend the book. Speaking your child’s love language can help your child receive on a deeper level the love you have to give.

Bearing the Unbearable

Bearing the Unbearable

I read with horror about the 9 year old who shot her instructor with a submachine gun at a shooting range as her parents videotaped this horrendous accident.  And this morning I read a piece by Gregory Orr in the NYT titled When a Child Kills. The first line of his piece is “When I was 12 years old, I killed a younger brother in a hunting accident near our home in upstate New York.” 

This piece is not about politicizing the use of guns. It is about how to help children when tragedy hits, and the unpredictability of accidents. We like to think we are in control. But sometimes we are not. He says, and I am paraphrasing, that when tragedy happens, we seem to be more willing to take on guilt and self blaming than to face something scarier: accidents happen. We live in a world that is random and unpredictable. “Self-blame and shame isolate the human spirit”, he says. Isolation is devastating and counters healing. Speaking of the unspeakable, the tragedy, the accident is difficult. But the alternative, silence, is worse and leaves deep scars and wounds.

This is so much of what therapy offers: a place and a compassionate person where one can be with unbearable feelings; where one can rail at the randomness of accidents, cancer, early childhood abuse, having a child with Special Needs.

Nope. Life is not fair. Somehow we have the illusion that it should be? Really? I, for one, want to help speak the truth about what is real.

How do we find the courage to walk through this pain? To quote an old  song, “I get by with a little help from my friends”.  My real friends who will be there with me and not try to put a band aid on things to cover it up.

I have a friend whose mother killed herself when he was 4 and everyone told him his mother had gone on vacation. No one spoke about her again. And a young teen client whose mother died a long agonizing death from cancer. No one talked with this girl about what her mother was going through week by week. They thought it would be too upsetting for her. And so she was left in isolation all by herself to wonder, hope, fear, and not know. How agonizing.  Within months every picture of her mother was removed from the house. And there was a 2 year old child whose 7 year old bother was killed in a bike accident. As this child grew up, everyone always asked him how his mother was doing. No one asked him how he was doing. He was alone in his suffering with a mother driven to a nervous breakdown. He was alone feeling guilty that he could not make his mother happy again.

So you get the picture.....tragedy happens. My only plea here is to find some way to talk to a child about his/her suffering and help him/her accept that when tragedy happens it happens and cannot be changed, prevented, or blamed on someone. Give the child unconditional love and permission to feel what they feel even though it may feel unbearable. Love, kindness, acceptance, talking it out makes the unbearable bearable.

Coping Skills

Coping

This week in our Mom’s group we explored what we had needed to cope with when we were 8 years old and what coping skills we used then. We looked at what of those coping skills we are still relying on that are no longer necessary; and what healthy coping skills we have now or want to develop.

Going back to our 8 year old life was difficult for most. There were dysfunctional families, parents who were alcoholics, parents who were suffering from mental illness, sexual abuse, parents who were so absorbed in their own turbulence that they didn’t notice the depression and anxiety that was plaguing their children.  It was painful to write about and revisit; but I think we felt seen and heard by each other, something we didn’t get when we were 8. Interestingly enough, as we looked around the room, we all had chosen people helping professions. Somehow surviving the traumas of childhood created a desire to help others and prevent or minister to those suffering now.

If you would like to do this exercise, draw with your non-dominant hand a picture of yourself at 8. Then write/list the qualities of your 8 year old self and write about what she had to cope with. Now write how she coped; what were her coping skills?

The coping skills we shared about were varied: reading, athletics, getting good grades in school, performing well to get attention, finding welcoming friends and their families to hang out with as much as possible, bullying, living in a fantasy world, taking care of younger siblings, praying, relying on Grandma and so on. Most of these are positive, but could become ones that are no longer needed, like living in a fantasy world, bullying, taking care of others to the detriment of self care, and a need to perform well to avoid self condemnation.

My 8 year old self was coping with an alcoholic mother and a physician father who worked a great deal. I was anxious and depressed and was made to feel bad about that by my mother. As most parents in the 50’s my mother wanted me to “snap out of it” and was not really capable of empathy. For me, God became a compassionate other, all knowing and all loving. I developed a fantasy about God helping me and I anxiously prayed constantly.

 I had a 5 year old sister and a 2 year old brother. I totally was in love with my brother and did a lot of care taking for him. Our next door neighbors had a baby girl, at that time, who I loved to push in the stroller before her naps. Eventually I babysat for them 5 nights a week. They owned the drive-in movie theater and needed someone to care for the baby almost every night. I went over and washed the dishes, cleaned the house a bit, and played with the baby. After she fell asleep, I fell asleep until the parents came home. I think care taking was a coping skill and it made me feel loved and important. To this day, I am a care taker and mostly I love it, but I can do it to the point of depletion and exhaustion at times.

 At this time in my life I have finally developed some healthy coping skills.  Working in my garden, watching movies, getting guidance from my consultant and therapist, talking with my close friends, and going out dancing all help to relieve stress and tension.

So write about what coping skills you have, which ones you may not need anymore and which ones you want to develop. Mothers of children with Special Needs really need to develop healthy coping skills to keep doing what they are doing. It is a daunting job. Please know that what you do is awesome and draining and tiring and loving.

I’d love you to comment on my blog and let me know how you are coping.

Frustration…..How To Deal With It

Frustration......How to Deal With It

We decided to dedicate this week’s Mom’s Group for Mom’s of Children With Special Needs to FRUSTRATION. But you know, it applies to every parent and spouse. Who among us has not felt frustrated by our child or a lover or a friend? 

We asked for examples of frustration. There were so many.  I will  focus only on one here. Almost every one of us were frustrated by our kids not brushing their teeth. That was a surprise to me. I thought I was the only one who had a child who refused to brush. In retrospect, I think it is a sensory issue because most of our children have these sensory issues, and brushing hurts in a way, and feels intrusive in another way. One Mom said she wished her child had all her teeth! Due to overcrowding, some permanent teeth had to be removed and she was given a partial dental plate. But sometimes she doesn’t wear it, and the mother would be so frustrated/put off by that. Our children with Special Needs somehow don’t really care how others perceive them, whether it be odd clothes, bad breath, or social faux pas. But it does frustrate us, who keep giving them advice and direction, all the while trying not to be intrusive, even though we are. One mother told us she keeps a toothbrush in the car for her and her children and they brush at red  lights on the way to school making it kind of a game and easing the tension around this important self care task. On and on, the examples became comical to us as we related to each and every one of them. One mother said that she realized with relief that her children were not the only ones who were weird. Our fear that they will be excluded socially or be rejected and isolated drives our “nagging”behavior and intrusiveness.

But what is a mother to do? Well, first of all we need to heed the saying from AAA....H.A.L.T.... for us and our child. Don’t get too Hungry, too Angry, too Lonely or too Tired. These, or even one of these, is a set up for children to meltdown, not listen, act out. And for we mothers, they can rob us of the stamina and patience we need to deal with a dysregulated child. 

We can reach out to a friend or someone who will understand, we can take a short time out for ourselves ( a bathroom trip, or go to our bedroom to breathe and self talk, calming ourselves); ask a spouse or partner to take over for a bit while we pull ourselves together. Probably there are other strategies you have come up with, which I would love to hear about.

But then there is the repair routine created by The Circle of Security team. (The Circle of Security Intervention by Bert Powell, Glen Cooper, Kent Hoffman, and Bob Marvin

The first is when we are upset and our child is upset, we need to calm ourselves and remember that we need to be bigger, stronger, wiser and kind. And remember our child needs us, no matter what.

Secondly when we are calm enough and our child is still upset, we need to take charge so our child is not too out of control. Sometimes it is helpful to change location like taking a walk outside or going to a designated “time-in” spot where we are together until feelings begin to change. 

We help our child bring words to his/her feelings. (“You seem really upset. I wonder if you are angry? You don’t like it when I say no to you. Does that make you feel like I don’t care about you or what you want?”)

Then we can acknowledge our feelings.(“When you throw things at me, I feel scared and worried”).

Stay with your child until s/he is calm enough. Stay in charge and stay sympathetic.

When both of us are calm enough, we can use words to help the child talk about the feelings and needs s/he is struggling with by listening and talking together.

Then we can talk about new ways of dealing with this problem when it comes up in the future. It is helpful for children to have more options of how to deal with difficult feelings. This bodes well for dealing with future issues.

And what the Circle of Security says is that “bottom line it is the relationship (and only the relationship ) that will build my child’s capacity to organize his/her feelings.” Ruptures in relationship are rooted in a need to reconnect. When we remain in charge as someone who is bigger, stronger, wiser and kind, feelings will settle and he relationship can be repaired.

There is no such thing as a relationship that does not have rupture. The key and strength of the relationship depends on the repair, the quality of the repair. So when we feel like we have blown it, we can use this repair routine and reconnect lovingly with our child. 

And one last thing.....some of our children have really annoying habits. Often they are self-soothing or sensory integration issues. Our children have little control over them. Shaming them only makes them feel badly about themselves. We need to soothe ourselves and have compassion for them whenever we can.

Bless you for what you do for your child!

Tell me YOUR stories.

Shame and Judgement

Looking for writing inspiration this morning, I found an article in my local Sunday paper by Darlena Cunha, ‘Well Off, And Then Suddenly Broke”.  She who wrote about being well off in 2008 and then during the financial/housing crash in ‘08 found herself poverty stricken with new born twins. She resorted to getting Medicaid and assistance from the Supplemental Nutrition Program for Women Infants and Children (WIC) to feed her premature twins.  She writes poignantly of the shame and humiliation she endured using her coupons. The stares, the pity, the verbal condemning remarks, have stayed with her for years, even after she and her husband crawled out of the hole of poverty. The line that struck me, was “Poverty is a circumstance, not a value judgement.” 

Judgement and shame. How many of us have experienced this devastating dual experience and continue to experience it? People with chronic illness, people of color, victims of sexual assault, parents of children with special needs, children with special needs, the whole LGBTQ community.  The list could go on and on. I hear their stories every day. My heart aches for these people with bruised and battered souls and egos. I get angry, I get sad, I feel a certain kind of hopelessness. And then somehow I am in connection with them and I fall in love with their spirit and their ability to persevere despite their circumstances in the face of such adversity. Because they experience from a therapist, someone who gets it, a flicker of hope, of self love can begin. But what if they had experienced this understanding and empathy as children from their parents?

Two things come to mind. How do we raise our children to have compassion and recognize the universality of being human? And how an act of kindness can make all the difference in the world to someone suffering.

It seems that shaming and punishing somehow became an acceptable way of parenting our children and teaching them right from wrong. Maybe because that was how we were parented. Maybe because the church taught us this. Maybe because schools and teachers taught us this. For sure, shaming and punishment have been used for ages in homes, churches and schools, all places where children are being raised. 

You know what I mean by shaming and punishing, right? Examples: A mother saying to a 3 year old who wet her pants, “Shame on you!”. Statements  like, “What is WRONG with you?”, “You are a disgrace to this family.” “You are naughty.” “You deserve to fail.” “You are lazy.” “You will never amount to anything.” “You are a bad boy.” Even statements like, “Get over it.” are demeaning to children. I worked with a family who came in with their daughter and were upset because she had pushed a girl, hard, in the lunch room. The parents were admonishing her and trying to teach her that that behavior was unacceptable. I asked her why she had done it (pushed hard). She told me that the other girl had followed her in to the bathroom and was peeking under the stall. And she had done that more than once. The parents were of the opinion that my client should get over it and ignore it. I was appalled by the “peeking” girl’s behavior. I responded with concern for how humiliating that was for the child in my office. Did she tell the teacher? No, that would be tattling. I comforted the child and let her know I understood why she was angry and had taken matters in to her own hands. I told her she needed help dealing with that other child and she needed her Mom to go in and talk with the teacher with my child client in hand.  My little client started crying and climbed in to her Mom’s lap pouring out more stories of “abuse” by that child.The Dad later told me he never would have imagined that showing compassion in that situation could have been the “right” thing to do. He felt she needed to toughen up and not take everything so seriously. But in retrospect, he saw how comforted his daughter was and how it empowered her to speak up when someone is doing something hurtful to her. She did not have to endure that humiliation, and more by her parents. By listening and supporting her it helped her feel listened to and not shamed. The end of the story is that Mother and daughter had a helpful talk with the teacher, and it turns out the peeking girl was very troubled and got a referral for therapy herself. I talked with my client the next week about how the other little girl had some troubles of her own (i.e. compassion for her, not retribution) and she needed some help. So by letting us know, the other little girl hopefully would get to talk to someone about what was bothering her. Can you see the circle of shame here? And how we hopefully interrupted it? It does take time, but it gets at what is going on underneath.

Another case involved a sister pushing her brother over on a stool. When I suggested that the girl might be jealous of her brother and  she needed a “time-in” rather than a time out, the parent protested, saying, “But isn’t that rewarding bad behavior?” A “time-in” is when you keep the child close to you for the next little while, as you attend to chores. The girl needed attention from her Mom. Attention seeking is what children do and what they need. To admonish them and send them away to their room alone only makes them feel bad, ashamed, lonely, misunderstood and sometimes more revengeful. You can better believe she will get her brother back at a later time for getting her in trouble,  and she will be mad at her parents for the “punishment”. To talk with her about what happened, and her feelings of jealousy toward her little brother will help her move through those feelings. 

Shame and punishment beget shame and punishment to others and to oneself. The hardest aspect of this in therapy with adults is to curb the tide of self blame, self shame, and self flagellation. We internalize what was done to us and we do that to others (including our children), as well as to ourselves. In the story of the mother of twins on food assistance, shame was rampant. To end this cycle within ourselves, we need to learn to forgive ourselves for whatever we did or did not do and understand the context, which will surly help make sense of our actions. The mother was doing the best she could to feed her babies under the circumstances. The issue of forgiveness is huge....better leave it for a later blog.

One last thought. Don’t underestimate the power of kindness. If you see a mother struggling with her child in public, or you see someone with food stamps in line ahead of you, or you see a beggar at the store, a warm smile and a nod of understanding can make such a difference compared to a sneer, or a sound of exasperation, or eye rolling, or a shaming comment. And know that your children are watching you. They learn by our actions as well as our words.

Know that I know you are doing your best. Remember that you can change your whole life by simply changing your mind and attitude. Be well. And please tell me your own stories!