Kim Gerry-Tucker: Shares About Asperger’s, Art, Selective Mutism, and Husband’s ALS

Kim Gerry-Tucker: Shares About Asperger’s, Art, Selective Mutism, and Husband’s ALS

Under the Banana Moon: Living, Loving, Loss and Asperger’s is one of those books that you can’t rest easy until you finish reading it and then you feel sad you’re turning the last page. There is no doubt the hero of this true story is Kim: mom, wife, caregiver, artist, author, and yes, she has Asperger’s. Since I finished the book, I often find myself thinking what is going on with Kim Gerry-Tucker now? That is why I was happy to learn she would participate in our Author Interview Series. Friends, check my review of her book here and really take the time to read it. Under the Banana Moon will leave its mark in your memory and also perhaps change the way we often take things for granted or make sweeping statements about someone different from ourselves.

Lorna: Congratulations Kim Gerry-Tucker on writing your memoir, Under the Banana Moon: Living, Loving, Loss and Asperger’s.

Kim Gerry-Tucker >> Thank you Lorna for all your kind words.

Lorna: You are still a young woman-

Kim Gerry-Tucker >> :)  (Did I mention she was kind?)

Lorna:  -and yet you already have accomplished so much and have experienced many facets of life that some people will never have in a complete lifetime. Let’s start at the beginning.

Kim Gerry-Tucker >>Okay, the beginning goes like this: My mother stepped down off the two little concrete steps, took my four day old body into her arms and  crushed me to her bosom (lovingly of course), “She’s mine! She’s mine! She’s my baby!” The woman who drove me to my parents from Massachusetts (no car seat, I was in someone’s lap) and delivered me to them, said warmly, “Be careful, you’ll squeeze her to death!”

Lorna: So, you were born in Massachusetts; raised in Connecticut, by loving, supportive adoptive parents. Tell us about your childhood and your middle school years.

Kim Gerry-Tucker >> My childhood was magical. I lived in a hoarder’s house, surrounded by glorious things! Our dishes were clean, our meals were always timely and our clothes were laundered, but there were valley paths between the things, especially in the bedrooms and that was just our normal. I had no siblings. No computers then. No cell phones, no color TV, or remote controls, no video games either. My fun was of my own creation. I had a boulder ‘house’ in the woods, a menagerie of various collections such as my beloved pencil shavings and pixie dust (crushed mica), and I had pets galore. My father was patient and easy going. He was the type of guy who threw his lunch pail on the table at the end of the work day and called to my mother and me, “I’m home you lucky people!”

I assigned meanings to colors.  Blue and white checks meant “mother.” Green was bad. With a far-away look in my eyes, I could look through people, (eye contact was a no-go) and I was easily misled. My naiveté got me into situations; with older boys, a neighborhood man, drunken uncles. My mother enrolled me in every club she could think of, so I would finally have normal friendships with girls, maybe even be a cheerleader which is what I heard her whispering that she dreamed for me. Alas, I still sat staring into nothingness, preferring twirling specks and dust motes to friendship- building and giggle- fests with girls that spoke foreign slang and seemed to be preoccupied with alien interests.

I ate the same carbon copy lunch (exactly without variation) for six or seven years. I spoke to one confidante and a few cousins, so I had a total of about five people in my whole world to talk to besides my parents. My voice disappeared to all of them periodically, depending on the environment. I was surrounded by a wonder-world of my own making. Bugs, books, rocks, beloved pets, trees.

I loved learning, but was struggling. Little things were torture and I had no idea why. At school I remained very still to shut out chatter, chairs scraping, and stimuli; to let the learning in. There were so many kids. So many smells and sounds. I must have appeared comatose! To learn, to focus enough to learn, I had to be that way. I had one teacher appear up close to my face and say “She’s an unemotional sphinx.”  The other kids waved their hands in front of my face, “Yoo hoo, is anybody in there?” I had silent screams in my head. At least I pulled off straight A’s now and again, and sometimes special awards for art. In gym, the ball literally bounced off my face before my brain told my body to catch it. One girl liked to kick me every day, just for fun. Ah, flesh and pride wound even those who do not express it with their features. These days I mourn the little me that I was.

 Lorna: It saddens me to read about how others treated you while you were growing up. I know the scars of this type of bullying are never forgotten. Now that you have been diagnosed with Asperger’s syndrome, can you explain things in your younger years that show you and/or your parents knew that certain things were different for you?

Kim Gerry-Tucker >> It’s interesting, because when I first started writing and publishing in literary journals in the 90′s, I felt raw, exposed. I hadn’t really ‘come out’ to anyone then about my Asperger’s diagnosis. Now it’s all ‘out there’ and it’s just me, and if one person who is on the spectrum says ‘me too’ after reading my memoir, then it makes me feel good inside. I remember feeling very, very alone with my differences  before my diagnosis.

So getting back to my differences: “Expression” in any way whatsoever always posed problems. My emotions never felt fluently connected to my facial expressions. There is no…poise, no facility or unreservedness to it at all. I always liken this to the emotion being the puppeteer and the strings for the marionette being cut, especially in my youth, because as one ages, a certain amount of learnedness can be acquired.

There was a disconnect. I felt people thought I was emotionless. I often pondered, “If I don’t ‘show’ it, do I then not feel it? Is this what they assume?” I am really in here. Am I overlooked by peers as invisible because I cannot communicate?

When I was about eight years old, I was accidentally slashed by a razor on my shoulder by a hair stylist. It had cut me right through the cape and I knew it. Eh, no matter, I thought. He’d find out later. I wasn’t one who was able to cry out. Besides, there was a mirror in front of me, and those things rendered me mute every time!  He’d been using the razor to trim the nape of my neck while giving me a “Pixie” hairstyle, the newest hairstyle my mother wanted me to have. When the cape was removed, there was a lot of blood on me and the stylist looked at me in shock. “She never cried out!”

Lorna: Would you have liked to have your Asperger’s diagnosis at a younger age?

Kim Gerry-Tucker >> In a word, yes. If I was pulled out of mainstream school, and put in a smaller class, and maybe had a room with just a few other people, maybe like-minded souls, it may have been more stimulating, relaxing. I may have excelled, missed less school. Put my poor mother through less hell about skipping gym class days and in turn not begging her to stay home. For me, I may have liked and actually needed a gym class with a more tailored approach. Something that allowed me to exercise alone, challenging myself and not being part of a team. Tumbling, sit-ups, something less group oriented. No rules that I didn’t get. There would’ve been less taunting and humiliation that way. And actual physical gains too! Although with peers who had similar challenges, I’ll bet teams would’ve worked out without a hitch. We would’ve all learned together.

Lorna: Those are excellent points that I hope educators will consider when they have students with different needs in their school. How were your teen years and high school and would anything have been done differently if you had known you had Asperger’s?

Kim Gerry-Tucker >> This was a tumultuous few years, as I suppose it would be for most teens, let alone an Asperger’s teen, as yet undiagnosed.. A diagnosis would’ve gone a long way toward a self acceptance I sorely needed. I needed a mentor to put my trust in, to expose me to the types of programs that would work with the real me toward helping me plan a future. That is a fine game plan for any teen, but for me those plans would’ve had to take Asperger’s into consideration (as well as selective mutism) every step of the way. But I was going it alone. A diagnosis could’ve provided those supports. Perhaps every person at some stage in life hears mantras repeated over and over in their head. I had them: “She’s an unemotional sphinx.” “She’s a human being too; I think.” “Are you deaf, dumb, or just stupid?” Some boy used to hold up that sign every single day so I’d see it while on my bus.

The negative mantras zip down our neural pathways; and voila! They think they’ve taken over the brain! Geez, I think they occupy the same space in the brain as when we hear a song and can’t get the lyrics out of our head. Frustrating. I decided long ago not to give these marauders the attention they cry so loudly for. The first step to eradicating them is accepting one’s self as is. Easier said than done; and it wasn’t because I had early supports.

Kim Gerry-Tucker: Shares About Asperger’s, Art, Selective Mutism, and Husband’s ALS  Lorna: Another challenge you had to overcome was selective mutism. Please explain what it is.

Kim Gerry-Tucker >>: I haven’t overcome Asperger’s or selective mutism, to be quite honest. I’ve matured and become more comfortable with those things as being a part of my identity. Selective mutism (SM) is an inability to speak in certain settings. It is usually defined as a disorder of childhood, but the Selective Mutism Foundation will tell you there are people (myself included) who have struggles with it lifelong. It is not the same thing as shyness. I explain SM as the ultimate in frustration, anger, humiliation, sadness, and anxiety. The voice literally becomes non-existent. It is as if it falls from the throat in a runaway elevator car of sorts in a freefall and you cannot access it. You want to take flight. After a while you learn avoidance. You pare circles down to a spare few. Add Asperger’s and what a cocktail! I’m a unique individual. I’ve met many asperger’s individuals however, with a co-morbid of SM. Many people with Asperger’s also can have ADD, bi-polar, clinical depression, etc. etc.  Or none of those things. In my case it’s SM. To the left is a photo of me miming with one of my children.

Lorna: Yes, I should know better, like Tourette syndrome which is in our family, one never “overcomes” these things; you learn to live with them and do the best you can. How has selective mutism had an impact on your life?

Kim Gerry-Tucker >> I have never hated being someone who’s got Asperger’s. Actually it’s weird to say “I’ve ‘got it.’,” because it’s not some kind of affliction, but it’s who I am. I have never actively hated the fact of being an Aspie, which is slang for asperger’s. I have wondered what it would be like for me as a person if I were neurotypical, that is to say, neurologically, a typical person. But that is as far as I go in my thinking of the matter. I would never want to be anyone other than who I am and I happen to be someone who is on the spectrum. But selective mutism, is another thing altogether. Sometimes I hate it. Other times, I forget I have it, because I’m not really one that accepts many invitations or puts myself in too many crowds where I’ll have a chance for it to crop up. But when it does show, and it’s complete voice loss, it’s devastating to me. So the answer to your question is that the impact has been steady, starting from childhood and continues to this day. It hits at times like an asteroid and leaves new crater marks in my psyche. The impact is shattering. I remain whole through meditation, the study of eastern philosophies, art, finding beauty in the little things. What alternative is there?

Lorna: What advice do you have for parents of children who have selective mutism?

Kim Gerry-Tucker >>: Kids with SM are so dear to me. Sometimes I feel I spot them in a crowd or at a school, in a doctor’s office, at a party; each child is so unique. If they are in Connecticut, I would advise the parent to contact my friend Judy Rosenfield with King’s Speech & Learning Center.  But I would never advise anyone unless they asked me for help. These quiet kids, it’s sad because they need to know there are others like them. They think they’re the only ones. After a while they get pretty sick of hearing, “Cat got your tongue?”

Howie, Kim Gerry-Tucker's husband with ASLLorna: Readers of Under the Banana Moonknow from the start that your husband Howie, the father of your three children, develops amyotrophic lateral sclerosis  ALS (Lou Gehrig’s disease). In spite of your anxiety problems, your communication impairment, and caring for your children, you become his sole caregiver. Without ruining the book for those who have not read it, can you explain where you found the strength to survive those difficult years?

Kim Gerry-Tucker >>: Buddhism. Perhaps that has given me an inner faith. Mosaics. There is more to that than you may think. I put it all over my entertainment center, much to everyone’s negative commentary. Yes, I stuck little stones all over the alarm clock too. They’re still there. I also grouted interesting deadwood and fine stones all over the wastebasket in the bathroom. They are still there too.  I got naughty and played around in a huge bucket of grout left behind by a crew that was remodeling the house and making the bathroom handicapped accessible and widening doorframes. I plunged my arms into the bucket up to the wrists in white creamy grout. I loved that stimulation, the whole smell and feel of it. I have always, as long as I can remember, found ways to enjoy, fully enjoy my senses. During this terrible time, (and I had so many shutdowns) as he was dying and slowly becoming paralyzed and even begging us to take his life, I shut down some senses so my other ones could be sharp. I mean this was a life and death situation I was in charge of. I dressed like a mime. Gave him his medication and nutritional drinks  through a stomach feeding tube while dressed like a mime. No one expects mimes to talk. Art, I tell you. It’s a life-saving therapy. Worked for me.

Lorna: What lessons do you hope readers will learn from your book?

Kim Gerry-Tucker >> Writing has always been a way to release left-brain build up. Maybe it was my therapy, if you want to call it that, although I’m never actively thinking that when I’m writing. Maybe each reader takes away what they need to take if they read “Under The Banana Moon.” My hope is that if a neurotypical person reads the book who isn’t familiar with asperger’s, they realize that when they see someone different from themselves, maybe quieter, or just eccentric, offbeat in some way, they see that: a feeling unexpressed does not necessarily mean there are no feelings in there. Try again later, in a different setting. Be patient, be kind, be understanding. Don’t make sweeping statements.

 Lorna: Yes, I am sure those who read your book will have a  much better understanding about Asperger’s syndrome. Besides writing, you are also an artist. Your paintings have shown at numerous New England galleries since 2007. Tell us about Kim the artist.

Kim Gerry-Tucker >> Kim the artist has a grandson who (at four years old helped name the book:) “Grandma, did you ever notice how sometimes the moon is a ball and sometimes it’s a banana?” I’d be remiss if I didn’t mention that at 5 years old, he now knows the true name of that moon phase is: crescent. Kim the artist is happiest in her element, which means her hands are smudged with colors, two abstract Pollocks. Strands of her hair are red, blue. Her appointed “painting shirt” is smeared and bedaubed.  She has forgotten to eat for the last six hours. There is a canvas on her lap and on it a path is taking shape, trees are gaining dimension. Her bladder is full. Her  mind is so full, fanciful and endlessly musing along with mind pictures in color and stereo surround sound in her head; one thought tumbling hell bent into the next as her hand moves the brush. Kim the artist has talented offsprings, three of them.

Sometimes one of my kids come to me and tells me about something from work, a promotion, an accomplishment. The same son who usedArt by Kim Gerry-Tucker: Shares About Asperger’s, Art, to disassemble piles of clocks and small appliances and attach their inner gears to his action figures to give them super robotic arms and metal faces. And now he is paid for his electronic know-how. I beam. The daughter shows me a poem or a drawing, rendered with passion. The middle son shows me another tattoo he’s designed for someone. The same son who mastered stop animation video at the age of twelve. Art completes me. When my children share it, that’s when I grin like the Cheshire Mom. I know what art does for me, how necessary it is to empty myself and at the same time fill myself. I love to see it, touch its textures, capture it in photography, have my children (nearly all of them adults now) bring it to me.

How necessary it is to paint hugging, dancing trees because I am so disconcerted that twenty or more  innocent trees are being taken down in my little neighborhood to make room for water pipes. This release must happen or I’d be curled up on the bathroom floor in a breakdown state. The painting of the dancing trees will not salvage the trees in my neighborhood, I know that. But it will save me from becoming the Lorax and assaulting the tree cutters. Kidding! That’s not me! However, if someone writes the word “unless” on all the stumps in the middle of the night, it wasn’t me…

So as I was saying, when my children share their passions, I become the Cheshire Mom. (Reference to Alice’s grinning cat.) An artist is as an artist does and Kim the artist sees art everywhere, as my family will attest. Lacy treetops, crosses found naturally in nature (I collect pictures of them), rocks, wood, bits from the roadside…I’m always picking up ‘art’ from the ground.

I show in AANE yearly, and have artwork in “The Art of Autism, Shifting Perceptions

Kim Gerry-Tucker artist Kim Gerry-Tucker: Shares About Asperger’s, Art, My self portrait ‘Shattered Image’ is on the cover of the book on the left: Artism, The Art of Autism.

Both these books are edited by Debbie Hosseini. Speaking of ‘Shattered Image,’ I am currently working on ‘Shattered Image2′, but this painting is based on my daughter.

 Lorna: At the end of Under the Banana Moon, we get a hint that you are working on a second book. Can you tell us more about it?

Kim Gerry-Tucker >> My next book is about throwing inhibitions to the wind and playing a rousing game of invisible tennis with someone at a real tennis court because you don’t have rackets and it’s  such wonderful silly exercise for the body and for (both sides of ) the brain. But it’s also about asking one’s self, does my asperger’s make me a bad judge of character?  “Am I too patient, too nice, too kind?”. How low is low enough? What are my personal boundaries?

This book has taken turns I didn’t expect it to take. My life where Under The Banana Moon left off started out calm enough. There was grieving, of course. There was a writing job, a book I ghostwrote for a client- “Reborn Through Fire.” Volunteer work at a hospital, at a library. I was doing things to stretch my comfortability levels, because that’s what living is. Then I boarded a rollercoaster (metaphorically), and that’s where this book gets going. I surrendered complete trust in someone. Was that wise? Did my asperger’s cause me to have blinders on? I never expected to be writing about such a serious topic, but here it is. I don’t want to give away too much but I promise readers that with all the sharp turns and pitfalls, there are hills that are climbed and the views are glorious! There is so much hope to be had and life to be cherished, and that is the message here.

Without giving away specifics, Lorna, let’s ask this rhetorically: What If someone you’ve dared to know and care about, was to tell you: “Long ago, I bit off a piece of someone’s ear in a fit of rage”?  This ‘friend’ tells you other things, dangerous outlandish things that widen your eyes. Would your expression falter, would you walk away, would you feel fear? Those are all rhetorical questions for you, but these are very real dilemmas in my next book. Trust, apprehension, and how much does asperger’s play a part in a not so normal friendship?

Enter a very damaged, unpredictable, persnickety dog with a propensity for hurting (badly) and healing people. Have you ever had a persnickety dog come into your life at just the right time? And that dog has  just the right personality to possibly save a persnickety and quite damaged person who is ready to tip over the edge into a dark pit?

As the observer, the one experiencing this transformation of dog and man, and of course as the storyteller, I am not only amazed at everything that has fallen into place as if it was ‘meant to be’, but I am transformed too. And of course I’m moved to tell it like it is, like the proverbial fly on the wall and sparing no grit whatsoever, except of course for the names that have to be changed because of the seriousness of the topics.

That’s it in a nutshell, Lorna. I am tempted to let you read the first chapter, but I just have to make you wait!

Under the Banana Moon: Living, Loving, Loss and Asperger'sLorna: Thank you so much for this interview. Good luck with all your endeavours! Please tell us where we can follow you and buy your book(s) and your art.

Kim Gerry-Tucker >>For finding some of my art, Kind Tree is a start.

I’ll have three paintings on display Saturday Oct. 13th, 2012 at:

Boston University

1 Silber Way  Boston, MA 02215

(617) 353-2000

As for buying the book, “Under The Banana Moon, Living, Loving, Loss and Asperger’s ” It’s in Kindle for a very reasonable price or in paperback too at Amazon.com 

Contacting me directly is one way to inquire about my current artwork or to ask me questions about writing, Aspergers, selective mutism, etc.  I enjoy talking via e-mail to peers or parents, readers, etc. kgtconeywheel.kaye@gmail.com

Or like my Facebook page

Thank you for the interview Lorna, I feel as if I have made a friend.

Lorna: You made a new friend indeed, Kim! The best to you and looking forward to your second book.

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This post was written by Lorna
Lorna d’Entremont: Vice-President of KidCompanions, mother of three, grandma of 5 and wife. Retired teacher and special needs advocate. Throughout she has taught all levels from grade 2 to grade 9. Lorna loved teaching and enjoyed seeing the students progress in the school system. During her 30 year career she took a few years off to raise her three children.