Posts tagged ‘anxiety’

Jiggles, Coat Hoods and Personal Space

images-2 Raising a child with a sensory disorder, whether autism or not, is always a challenge. When younger, Steven was the type of kid who would have a huge meltdown if there were tags in his shirts or seams in his socks. Meeting new people was too overwhelming, and a change in his schedule would send him into a tizzy. Holidays were disasters and birthday parties…forget it!
Not used to going out to restaurants because of Steven’s behavior, we threw all caution to the wind and went out to a dinner buffet for my 35th birthday. We chose a very large booth waaaaaaayyyyyy in the back of the restaurant, away from the noise and the crowds. Six year old Steven, who was still on a liquid diet due to sensory issues, curled up in a ball in the corner of the booth. He pulled his hood up over his head to block out surrounding activities and had a jiggle toy in each hand which kept his fingers busy. Giving him a wide berth of personal space, I was pleased as he sipped on his can of Ensure and was part of my birthday dinner. We talked in a soft, low tone and Steven even participated in the conversation from time to time.
It was a delightful night out…until SOMEONE told the staff that it was my birthday. (I suspect is was my youngest son, Angel, who was always selfishly delighted when Steven acted up, thus in his mind reassuring his place as the “good son”.) The staff came over with a lit candle on a cupcake, and sang Happy Birthday in out of sync voices. Steven immediately jerked up from his position, covered his ears and started to screech. He threw himself on the floor under the table and started banging his head against the wall. The happy moment was gone. I imagined people were looking at us as though we were the worst parents in the world! For the first and only time in my life as a mom, I emotionally stomped out of the restaurant in tears, bemoaning the fact that I couldn’t even have a normal, birthday dinner without accusing eyes watching as my husband carried our screaming child out. I was sure they thought he was a spoiled brat who couldn’t behave. Little did anyone know that he had been born to a homeless, schizophrenic mom addicted to heroin and cocaine and that he was so emotionally fragile in those early years that we could rarely leave the house. Little did anyone know that our family had worked hard to help him develop to the best of his abilities, working on his sensory issues so that he could fully participate in our family life to the best of his abilities and that it was a huge accomplishment that we were able to go out to the restaurant in the first place.
Both Steven and I calmed down quickly in the car and life returned to normal. Little did anyone know how deep our love and acceptance was for this child and for all of the issues that came with him and for all of the issues which were to come.

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For more stories about Steven’s childhood, please, read my book. Here is a link:

https://itunes.apple.com/us/book/the-apple-tree/id538572206?mt=11

The Apple Tree: Raising 5 Kids With Disabilities and Remaining Sane

The ABCs of ADHD Redux

I wrote this post more than five years ago. These words were expressed when I was working full time and trying to raise 2 kiddos with ADHD, 2 with ADD, and 2 with RAD. I have cooled down a bit, and things have improved immensely. (I know many people are anti-medication for good reasons, but for me, my children would not have survived with out it.) I have nostalgia for several of the comments, and say “GOOD RIDDANCE” to the things I don’t have to worry about anymore!
And so, without further ado, The ABCs of ADHD redux!

I’ve read the articles and books on ADHD. I know the discipline methods, positive reinforcement, rewards and time outs, the methods of Ross Green, sensory diets, nutritional preferences and the medications that work best. But I also know the realities of ADHD. In real life terms, the ABCs of ADHD/ADD are:

Attention! Always on alert for dangerous situations due to impulsive behaviors, such as running across streets without looking, grabbing a butcher knife to cut the end off a banana, running up the down escalator, and grabbing the dog or any other animal roughly and the dog (or other animal) retaliating by biting (or scratching.)

Be careful! Be careful! Be careful” is the parent mantra.

Climbing climbing climbing: out of the crib at age 15 months, out of the bedroom window when a teenager, on rock walls and curbstones and couches.

Don’t touch that! Don’t do that! Don’t hit her! Don’t pull that! Don’t eat that! Don’t hurt it! Don’t break it!

Exhausted parents trying their best to keep up.

Friendships are difficult.

Go! Go! Go! They’re always on the go!

Helpless parents, unable to control their child’s behavior, especially embarrassing in the grocery store under the staring eyes of others, judging them.

If only he’d… If only she’d…. Parents dream for a different lifestyle.

Jumping Bean: he goes here and there from friend to friend to friend, never staying long enough to establish a real friendship.

Kitchen walls are written on, cupboard doors have nicks in them, curtains are ripped, bedrooms are messy.

LOVE. Parents give unconditional love, but the behavior doesn’t change because the ADHD remains…

Medication? Medication? Medication? Should I use it or should I not?

Not paying attention in school so schoolwork suffers: not paying attention for homework, so it’s a nightly fight: not paying attention to other’s feelings, so keeping friends is difficult.

Overload happens easily and tantrums result. Keep it quiet. Keep it simple. Keep it under stimulated for peace.

Psychiatrists have become my best friends!

Questions! Questions from them all the time! Especially hard to escape when you are stuck riding in the car together.

Rewards for good behaviors; cuddles, high 5s, stickers, ice cream, Playstation, tv.

Self-esteem is low; it seems as though parent’s and teacher’s patience is limited; always the troublemaker, always in trouble.

Time-outs in the seat till we’re blue in the face. All the time spent in time-outs would add up to a year in the life.

Understanding is needed from parents, family, friends and teachers; understanding is often in short supply.

Very draining on all, child and adults.

Whining, whining, whining until parent’s ears hurt.

X-rays, CAT Scans and emergency room visits: active behavior results in injuries.

YIKES! What has he done NOW?!?!

Zest for life would be a polite way of putting it…

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To read more about those early years, struggling to raise children, please read my book. Here is a link:

https://itunes.apple.com/us/book/the-apple-tree/id538572206?mt=11

The Apple Tree: Raising 5 Kids With Disabilities and Remaining Sane

What’s In My Purse?

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As the mother of children, especially children with disabilities, I have been a frequent visitor to emergency rooms. It didn’t take me long to realize that those hours spent W A I T I N G were tedious for my kiddo and myself. In fact, for my kiddos with ADHD, they could be dangerous. With Steven, he would open all of the drawers and fling the contents onto the ground, swing from the air hoses and climb on top of the curtain. He was generally uncontrollable in an environment that he saw as a playground and I saw full of dangers that would land him in an emergency room for a reason other than for that which we had come! I had a knot in my stomach and tears of frustration. The emergency room staff and I finally learned that the only examining room suitable for Steven was one for psychiatric patients…no drawers, no air hoses, no curtains to climb. That solved the problem somewhat…but the long wait was also a major issue. Visits to the emergency room often ran six, seven hours, and sometimes all night! What to do? What to do? What to do?

Alas, out of need emerged my “emergency room purse”:
*Extra copies of medical cards and social security cards; when under duress with a screaming child coming in with the ambulance, rummaging through my wallet for these items always seems problematic and adds to my stress.

* A written medical history for each child; remembering those pesky spelled medication names and listing hospitalizations and diagnosis are always nerve wracking, having them at your fingertips is priceless.

*Quarters and crisp dollar bills for the vending machines.

*Animal and peanut butter crackers along with some juice boxes so I don’t have to spend so MUCH at the vending machines. (Dispensation of food and drink dependent upon reason for visit to emergency room)

*Cell phone charger (hours waiting…games to play…people to call…need I say more?)

*A deck of playing cards, INVALUABLE for killing time, and also for great mother/child bonding.

*Manipulative toys
for kiddos with ADHD…nothing like having that coil to twirl or that Rubik’s Cube to solve.

*Extra diaper/underwear and pants unless the child prefers to go home in a hospital johnny. (My daughter, Marie, actually loves the hospital clothing and has a whole drawer full…starting from small sizes when she was young up to the adult sizes she wears now.)

*Chap stick; the rest of me may look like Frankenstein’s monster, but my lips will be smooth and pretty.

*A large print, best selling book for me to read; when a kiddo is sleeping, (YAY!) the lighting may be dim and my eyes may be teary, but large print has always served me well.

My life has been spent trying to remain sane while raising children who can be difficult. Emergency room visits are always stressful and my mitigating solution is the “going to the hospital” purse.

Not to be confused with my “going to the movies” purse…

The Little Things for Which I am Grateful

Joining my blogging friends, I am thankful for my family, friends, and our comfortable life. However, the holiday of Thanksgiving also provides a wonderful opportunity to express my appreciation for the “little things” in life. For instance, all of those wonderful times when you get green lights all the way to work! I actually treat traffic as though it is the norm to prevent getting annoyed or anxious. That way, I am super happy (and thankful) for those times when all of the traffic lights are green and it’s like smooth sailing all the way!

There are several other little things for which I am grateful:

curling irons: without them my hair would be frazzly and I’d look like Einstein, (no offense Mr. Einstein, if you are reading this from heaven…)

working pens, preferably in a lively color: who has not had the problem of searching frantically for a pen only to finally drag one out that doesn’t work?

TIVO: there are only a few television programs that I like to watch, and they inevitably are televised during a time I am unable to watch them. TIVO is a life saver AND a time saver because I not only get to watch “my” shows at a convenient time, but can fast forward through the commercials!

reading glasses: yes, I have reached the age of needing reading glasses. How wonderful it is to put them on and not to have to squint!

coin holders in cars: putting all of my spare change in the coin holder serves me well when quarters are needed for a parking meter or a Diet Coke at McDonald’s! (No reprimands, please, I know Diet Coke isn’t healthy, but I love it anyway!)

money found in the dryer: isn’t it exciting when you have emptied out the dryer and several quarters and a dime are sitting there at the bottom? I was SUPER lucky the other day and found a twenty dollar bill! (It was like winning the lottery!)

half and half cream: we go through so much milk in this house that there was a time when there wouldn’t be any left over for…..sob, sob…that first, steaming, wonderful cup of morning tea. My wonderful husband discovered half and half which no one would dare drink. Problem solved!

comfy shoes: there is nothing that stabilizes and calms me more during the day than wearing a pair of warm and snuggy comfortable shoes.

spritz of body spray: not being a perfume person, there is nothing better to lift my spirits than a nice body spray of citrus or apple cinnamon. (Of course, if it is late in the day, it COULD make me hungry…)

I am very thankful for all of these little things in life that have, in some way, added to my happiness in life. Now, if ONLY I had an automatic car starter, (hint, hint, hubby dear.) MAYBE I will get one for Christmas. Then, in the freezing winter, I can walk out to a WARM car with my comfy shoes, stylish hair, smelling of fruit. Ah….I can only dare to dream…

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To read more about our life, here is a link to my book:

https://itunes.apple.com/us/book/the-apple-tree/id538572206?mt=11

The Apple Tree: Raising 5 Kids With Disabilities and Remaining Sane

Link to the Readers Digest review of my book:  http://www.rd.com/recommends/what-to-read-after-a-hurricane/

And The Paper Creeped out the Bottom of the Door

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A very large, very tall, very old 15 passenger van with a wheelchair lift with over 138,000 miles on it is my vehicle. Not my ideal choice, but “it is what it is” as all of our money is allocated elsewhere. (All those cute little kiddos with disabilities grow up to be cute little adults with disabilities who, unfortunately, find it impossible to be able to work. Not that that makes them any less wonderful, enjoyable or successful, it just puts a little extra strain on our family budget.)

In the van on Wednesday, I was enjoying a beautiful, crisp autumn day, with a slight wind moving the branches around for the trees to show off their few remaining colorful leaves just waiting to join their friends on the ground. Contentment filled the van as I hummed while I drove. I didn’t quite do the lovely singing I usually do because I was on a mission for work. (While driving to make home visits is not usually included in my job description, on this day I was helping out a colleague.) Because I am awful with directions, “mapquested” directions lay on the floor next to the driver’s seat.
As the van whisked along on the interstate highway, I noticed that the directions had moved towards the door. Keeping one eye on the road and one eye on the directions, I watched with panic as the papers moved closer to the door…down one of the steps…down the next step…and finally on the third step. It happened in the blink of my eye (the one that was watching the papers!) As I was in heavy traffic, it took a while to maneuver to the side of the road to stop, and the papers inched towards the bottom of the door. (The door gasket had long ago aged out and fallen away, leaving a space at least an inch wide at the bottom.) Panic set in as a piece of paper entered the crack and ever so slowly inched out…it was like seeing my life flash before my eyes, quarter inch by quarter inch, as the paper made its way free out of the opening. It was so surreal it reminded me of a cartoon…person chasing paper in the wind and the paper is always one step ahead, teasingly just a little bit out of reach! I would have laughed, but inside I was sick to my stomach. My directions were gone! The client I was going to be meeting would be sitting, forlorn, at her home, waiting patiently for the me that would never be able to find her house.
But WAIT! There was another paper there, clinging to the bottom step. Maybe I could salvage the final steps of the street directions. By this time, the van was safely stopped by the side of the road and I flung myself out of the driver’s seat onto the floor of the van to look down the stairwell. On my knees looking down, almost crying with happiness, I grabbed that one precious piece of paper…it included the final steps to get to the client’s home. I would be able to find her! I would make that visit! I was soooooo happy!

While in the scheme of things, losing mapquested directions would not be the end of the world, in retrospect it symbolizes the constant struggles one has when raising children with disabilities. There are often solutions to their problems, but they are flighty and hard to come by. Sometimes they flip through our fingers through no fault of our own and we are left in a slight panic, (sometimes a huge panic…) Fortunately for me, I have always found that last page to my mapquested directions, just enough to make life work out. Just enough to relieve my panic and restore the happiness in my heart. Such is the ups and downs in life…

For Sentimental, Sappy Souls

On Columbus Day, my husband and I spent a wonderful day just driving around and enjoying the autumn scenery. I don’t know about you, but I seem to have an unusual sensitivity to the beauty in nature, and was once again overwhelmed by the beauty of the bright white and yellow streaks of sun streaming down through the white puffy clouds. Such a sight always encourages me as if reinforcing the fact that yes, there are clouds, and yes there may be rain, but that sun is still up there in the sky, overseeing it all, just waiting to break through and make things better. As an added visual treat, the sun shone so brightly on the tapestry of peak autumn leaves: oranges, reds and yellows, that I felt a need to wear my sunglasses, but with them on I would not be able to fully appreciate the effect of the over-the-top, gasp inducing colors. No photo, piece of artwork or beautifully sung song could have replicated the intensity of happiness that brought tears to my eyes and joy to my heart.
My husband and I sat, holding hands as he drove. There was no need to say anything. We were at peace, pleased to have such a respite after a hectic week of raising children and dealing with problems. We were in our own beautiful bubble, cell phones turned off so as not to ruin the interlude. It was a wonderful day!
Upon pulling into the driveway of our home, I spotted the two small maple trees which Marie had planted a few years ago. She had excitedly dug them up when they were fragile saplings with broken branches, and planted one on each side of the driveway. She had added gravel at the base of each, and attached a tall, straight, thin stick to keep them growing upright. I don’t know why I hadn’t noticed them before. I had NOTICED them, of course, but I had never really SEEN them. They had grown to be about four feet tall, straight and strong. My breath stuck in my throat as the brilliant, bright yellow leaves danced happily in the gentle breeze. They were a growing metaphor for my daughter, blossoming and beautiful and holding the promise of a bright future in their little yellow leaves. Despite once being fragile and broken, they would grow tall and amazing and fit perfectly in this world, reassuring me that my daughter, who was also once fragile and broken, would grow tall and amazing and fit perfectly in this world.

Miracle of Miracles: Turtle Tanks and Pony Tails

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My life raising kiddos has been full of excitement, as well as challenges. Steven has been my most difficult child to raise. The 7th child born to a woman who was mentally ill and addicted to crack cocaine and heroin, we took Steven home from the neonatal unit as soon as he was able to be released.  He was unbelievably “messed up”.  (Don’t you just love my knowledge of medical terms?)  He cried constantly, his whole body twitching.  Once I learned to swaddle him tightly in a baby blanket, keep the room dark, and talk in a whisper, he could tolerate my presence.  To touch him lightly would make him scream in pain, but cuddling him strongly, the deep pressure somehow calmed him.

Whether due to the drug exposure, or just because his birth mom was mentally ill, Steven exhibited extreme symptoms of ADHD, autism, bi-polar disorder, sensory integration deficit, obsessive compulsive disorder,severe anxiety disorder and learning disabilities.   (The whole concept of “diagnosis” is fraught with contradictions in my mind, as the “diagnosis” with which he was labeled were arbitrary, useless except for the benefit of getting special education services. We were fortunate to find a psychiatrist with vast knowledge of children born addicted to drugs, and he became our mentor.  Like myself, he does not not believe in labels, but in treating the symptoms.)

Steven has led an interesting life.  With his Asperger’s-like super knowledge of reptiles, and an uncanny natural love for children, he has shined in these areas.  He would be fascinated with the foster babies in our house, and his most favorite activity was sitting in the rocking chair by my side and rocking a little one.  He is, however,  unable to understand the concept of money, wear shirts with tags in them,  eat textured foods or adapt to an unexpected change in his schedule.  A strict, structured environment and predictable schedule has been the key to helping him manage every day life.

As any parent, I have thought a lot about his future and how he could possibly survive as an adult…

Then, a miracle happened…he found the perfect girlfriend to love him! Wonder of wonders!  Joy of joys!  I never thought is was possible, but the adage “there is someone for everyone” is true in his case!

Wonderfully patient Alexandra loves to keep everything controlled.  Where other young men would go running in the other direction at the sight of a young woman in strict control, for Steven, it was just what he needed!  She manages their time, his money, and their life together with strict precision.  JUST WHAT HE NEEDED!   They also have similar interests in reptiles, with Steven using his vast knowledge to ensure the safe upbringing of their many “pets”; three turtles in a tank, (recently caught in the lake behind our house, during one of their day long fishing adventures,) a small snake, a Chameleon and two lizards.  They are affectionate with each other, with Steven smiling brightly as she gives him deep bear hugs. The icing on the cake, as far as both of them are concerned, is her young daughter.  Again, where other young men would go running for cover, Steven goes running towards her sweet three year old daughter! He adores her!  This very large, 6 foot talk, husky, bi-racial, often scary looking young man who has an aversion to shaving, is like a loving angel with her daughter! He gently holds her hand to guide her when they are walking.  He plays Shutes and Ladders and Go Fish with her. He helps her pick out her clothes, (shirts without tags, of course!) Most amazingly, he has become her hair stylist, putting her hair up in braids and pony tails.  She loves showing off her new hair styles, proudly telling everyone that STEVEN did it, as they both stand there and beam happily!  She needed a dad to love, and Steven needed a family of his own. He adores Alexandra and she has a huge calming affect on him. And he has such a natural caring for children, and for Emily in particular, that it melts my heart every time I see the three of them together.  He LOVES them…an emotion I once thought he would never feel…as a boyfriend, (husband?), and father. Yes, he has found comfort in his own family…and has a content, structured, “normal” life.  Isn’t that amazing?????  Miracle of miracles!!

Is there no greater joy as a parent than seeing your child happy as an adult? Especially when you thought that may never happen…

 

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To read about Steven’s early childhood, here is a link to my book:

https://itunes.apple.com/us/book/the-apple-tree/id538572206?mt=11

The Apple Tree: Raising 5 Kids With Disabilities and Remaining Sane

Link to the Readers Digest review of my book:  http://www.rd.com/recommends/what-to-read-after-a-hurricane/

Also, for just the cost of transportation, I am available to do presentations for your groups.   I can be funny on serious subjects…

“All she does is screech and say No! No! No!”

 

The above description fit me perfectly.

Yes, me… perfectly.

Marie came to live with us at the age of 6.  She had been picked up off the street at 4 in the morning, barefoot, in her underwear, looking for food.  We took her in as an emergency foster placement because I knew American Sign Language and Marie was deaf. She looked like a wild animal…disheveled, matted hair, flaming eyes of distrust, so filthy everywhere that even an hour in the tub did not wash off all the grime.  Her teeth were dingy yellow, and her body was emaciated.  Being the “good” middle class mother that I was, I cleaned her as best I could and then I took her to buy some clothes.

In the store, she immediately disappeared.  I impulsively called her name, (as though she could hear me.)  When I finally found her, she was in the candy aisle, shoving candy bars into the pocket of her pants.  I screamed,  “No! No! No!”  She looked at me and ran in the other direction.  I finally tracked her down in the pet aisle, just as she was about to open the cage to the hamsters.  I screeched and said “No! No! No!”, and proceeded to grab her, pick her up, empty the candy bars in her pocket, and tote her back to the car without buying anything. If I thought this would teach her a lesson, it did not.  She was not used to buying anything, so she could not appreciate something she never had.

We ate out for lunch at McDonald’s.  Marie ate her sandwich and drank her milk and threw the wrapper and container on the floor.  No! No! No!

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The next day I gave her a stern talking to (“signing to?)  and told her that we were going shopping for clothes and that she needed to stay with me. As though THAT was going to work!  As soon as we got into the mall, a place she obviously had never seen before, she skirted UP the DOWN escalator, laughing with glee.  Mortified, I screamed and said No! No! No!  and then watched in horror as she slid down the banister of the escalator.  Big scream! No! No! No!  Home we went. 

Once at home, she got an orange to eat.  She grabbed the butcher knife to cut it and I screamed and caught her hand just as it was about to demolish the orange. No! No! No!

The next day we were going to take a walk to the library.  She broke free from the grip I had on her hand, and ran across 4 lanes of traffic. Scream! No! No! No!

Later in the evening, while watching television, Marie climbed onto my husband’s lap, where she attempted to rub his “private parts” and kiss him.  SUPER BIG SCREECH!  No!  No! No! Oh!  This child was so “bad”!  WHAT was I going to do with her?

At the end of the week, I went to Marie’s school where she was part of a dance performance.  I was glad to be able to be there, as her birth mother had never been seen at the school before.  I watched with pride as she danced and twirled, often sneaking a peak at me to see if I was looking.  When the dance was over, I saw her talking (signing) with another student who commented that Marie had a new mom, and how did she like her? Marie looked over at me for a minute and crumpled her nose, telling her that all I ever do is scream and say No! No! No! I was shocked.  I had never thought of it before, but she was right!  I was so busy chasing and correcting her that it would seem like all I did was scold her.  And what was I scolding her for?  For what I, as a middle class mother, think is wrong.  I had never taken into account that Marie had been raised to do all of those things…to steal food, to take what she wanted from stores, to litter, to be sexually promiscuous (at the age of SIX!) and to have no worries about safety, thinking she was invincible.  This young child, who had lived on the streets and managed to survive without any parental care, just parental abuse…WAS invincible! She did what she needed to survive.

I was so embarrassed. Embarrassed because I was judging her by my standards and not stopping to think of what her standards were.  I vowed never to scream No! No! No! again, but to explain things in a loving manner to her.

We do not steal.  If you want something, I can probably buy it for you.

We do not run into streets with cars, use butcher knives, or slide down escalators.  It is not safe.

We do not just throw garbage on the ground, but in our family we pick it up and put it in a garbage can.

And, most of all, there is no need to make money by being “friendly to men”.   We have plenty of money so you don’t have to do that.  And it is not fair that you had to do that instead of just being a little girl. And you never have to do that again.

Marie did not change overnight, but each time she would fall back onto old habits such as stealing or being unsafe, I would lovingly explain why she no longer had to do that.  She had a family that loved her and it was our job to keep her safe.

Then there was the time when, walking in the mall with a soft drink in her hand, she unwrapped the straw and threw the paper on the ground. My eyes widened, and she laughed when she saw my reaction.  “I was just teasing you” she signed.  “I know I don’t litter in this family….” 

No more screaming from me…

 

 

Link to my book  The Apple Tree: Raising 5 Kids With Disabilities and Remaining Sane

Link to the Readers Digest review of my book:  http://www.rd.com/recommends/what-to-read-after-a-hurricane/

 

 

 

 

The Dance of the Snake Goddesses

Forgive me for re-posting this from a few years ago, but I thought you might enjoy it as it is a New Year’s Eve story…

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photo from Ophidiophobia – Fear of Snakes (Picture by Dev Khalsa)  honorslounge.com

A very conservative lawyer friend had a very conservative lawyer wife who had taken up belly dancing.  She and 2 friends were so skilled in this talent that they were chosen to be performers for a large audience for First Night, the annual New Year’s Eve celebration in the city.  For an added “twist” to their act, my lawyer friend asked if his wife could borrow one of my son’s 5 foot long boa constrictors for their dance.  I had plenty of reservations, but I said okay. (It is always good to keep a lawyer friend happy because you never know when you will need a lawyer’s help.)  The ladies came to our house, and practiced with the snake while my son, Steven, who is very familiar with snakes, supervised.  The practice went very well, and the ladies excitedly decided to bill their act as the “The Dance of the Snake Goddesses.”

Well, New Year’s Eve came and I reminded Steven that we had to take the snake to the performance hall for the act.  Steven, who has Asperger’s and an anxiety disorder, was mortified!  There was no way HE was going to go to a large hall where there were a lot of people!  He handed me a pillowcase to put the snake in, and a bottle of alcohol “in case it bit someone”. He promptly took off on his bike peddling away to destinations unknown to me, (but far away from  First Night appearance.)  I started to panic!  These excited dancers were billed as the “The Dance of the Snake Goddesses” and they would have no snake!  Feeling extremely obligated to provide them with a snake, I decided to bring the it myself.  I had not minded the snakes when they were locked in the glass tanks, but somehow I was going to have to get up the nerve to actually take the snake out and put it in the pillowcase.  My hands were shaking as I undid the lock and took the cover off of the tank.   It looked docile enough, just lying there.  I reached in and managed to push it into the pillowcase using a long sleeved pot holder, proud of myself for not having to touch it.  Maybe I’d be okay! I tentatively carried the pillowcase to the living room, but I had miscalculated by not securing the top of it.  The snake’s head popped out, I pushed it back down.  It popped out again, and I pushed it down again.  This time it was stronger and its head came our farther.  When I tried to push it back in, it wiggle away from me and the whole snake came slithering out of the bag, which I promptly dropped.  There, on the floor of our living room, was a slithering 5 foot long snake!  I screamed.  My husband came to see what was going on, and he jumped up on the couch and screamed.  Even though I was shaking and my first instinct was to smash the thing over the head with a broom, I remembered  my commitment to our lawyer friends.  I gathered up my courage and, using the broom gently, I nudged it back into the pillowcase, this time immediately tying the top into a knot.

I was still shaking from this experience as I drove to the city with the wriggling pillowcase on the seat next to me.  I was feeling tremendous relief that I had at least caught it and was on my way to the performance. I even felt a little sorry for it, and turned the heat all the way up in my car so it could be warm.  (It had started to snow outside, which would mean there would be a larger than usual audience for an inside performance as the outside First Night performances would involved standing around in wet snow.  Great!  A bigger audience for what was sure to be a Snake Goddess fiasco!)

When we got near the theater, I put the pillowcase inside my coat to keep it warm. (MY I was brave!)  There was a line around the building waiting to see the performance.  I went to the head of the line, and quietly said to the guard at the door, “I have the snake for the performance.”  In his loudest voice, he parted the crowd by saying “Make way for the snake handler.  Make way for the snake handler!”  I wanted to hide!  As a 55 year old shaking, nervous, dowdy woman, I no more resembled a snake handler than a chipmunk would resemble Santa Clause.

I managed to get back stage with the snake and the belly dancers were very excited.  They carefully took him (her?  I couldn’t tell the difference,) out of the bag and began to practice.  By now I was shaking so badly that my stomach was in knots.  I was holding the bottle of alcohol (“in case it bit someone”.)  I was on the verge of tears, both from relief that I’d delivered the snake in one piece, but also fear that it would bite and there would be blood and screams and lawsuits.

The audience in the large theater was packed, standing room only.  The music for the dancers began.  They dramatically began the act hidden behind veils, with the snake on one woman with the head at one hand, draped across her back, and the tail on the other hand.  They did a dramatic dance, dropping the veils at different intervals for the audience to get a glimpse of the snake.  I could hear  “ooooh”  and “aaaaaah” from the audience.  I was hoping the snake wasn’t going to slither down and into the audience causing mass panic,  emptying the audience out into the street, or, worse yet, go around biting audience members with me following along with my bottle of alcohol. (Then I’d really need a lawyer for the lawsuits!)

Then something strange happened. The dancers dropped their veils, and the snake actually seemed to join in the dance.  Soon its head was wriggling in time to the music, its tail was swaying around, and it seemed to be having a grand old time!  It began to slither in time to the music (a pure coincidence I’m sure,) from one dancer to the next.  It was an amazing sight, the graceful gyrating dancers and the graceful gyrating snake, all moving in time to the music.  Mesmerizing. Amazing.  The act finished to a standing ovation, and darn it if it didn’t seem as though the snake bowed his head in response to the clapping from the audience.

After the show, the dancers gave the snake a few affectionate pats and back into the pillowcase it went.  I tied it in a knot, put it under my coat, and carried it back to the car.  I felt as though I was going to cry, but this time it was tears of relief.  I don’t know how I get myself into these situations, but, again, I’d come through it unscathed, with a little more respect for the reptile in the pillowcase next to me!

 

Thanks for reading.  If you want to read more here is the link to my book:The Apple Tree: Raising 5 Kids With Disabilities and Remaining Sane

Little Toe Socks inside Insulated Socks

emily

My daughter, Marie, was chosen for a special snowboarding program for students with psychiatric disabilities.  A team of trainers from a local mountain have donated their time, and the mountain has donated the snowboarding equipment to coordinate a comprehensive, six week snowboarding school.  Marie, who loves the snow, skiing and snowmobiling, was thrilled to be selected.

I was thrilled for her to be chosen, not only because it will be a great program for her, but because for Christmas it also gave me something to buy a child who “has everything”.  My husband and I visited a local winter sports store that had a 75% off sale because of a recent fire, (yay!  I love bargains!))  I delighted in choosing snow pants, little socks with the toes in them, which are then worn under insulated socks, little gloves with fingers in them which are then worn under insulated snow mittens, insulated underwear, (tops and bottoms, of course,) a ski face mask, a warm winter hat with a brim, and, most importantly of all according to my husband, a snowboarding jacket.  He explained that snowboarding jackets are much longer than ski jackets because you spend so much time on your butt!   I was delighted with our purchases, although I later realized that I had forgotten the ski goggles.  We packed them all up in a Christmas bag which Marie opened to great excitement Christmas morning.  To say she was thrilled was an understatement.  She beamed.  She glowed.  She was going to be a snowboarder.  At the end of Christmas day, we packed up all of her presents and brought her back to her residential school.

In order to add a little excitement to her Christmas vacation, I took her for a weekend in Boston.  After I picked her up, we stopped at a Panera Bread for lunch before we boarded the train for Boston.  I was so surprised, (shocked, embarrassed) that she was dressed in ALL of her snowboarding gear, such as in the above photo I took of her.  I told her to take the mask off or she would scare little children away.  She looked around and saw no kiddos running from her screaming, and she told me she was fine.  I was mortified, (which is not an easy feeling for me.)  The only thing I could be thankful for was the fact that I had forgotten to buy those ski goggles, because she would have certainly been wearing them, also.

While in Boston, we had planned to go to the Aquarium, but she asked to go ice skating instead, which made way more sense than the aquarium. (I could envision the fish swimming away from her in terror!)  Unfortunately, no one had given ME snowboarding equipment for Christmas, so I only had on a light winter coat.  My plans for the weekend were to run from metro stop to metro stop doing activities indoor.  I was dressed for fish viewing and shopping, NOT for the cold weather.    But, as most mothers can attest to, I wanted to make my daughter happier, so off we went to the Frog Pond Skating Rink.

Being a little bit unsteady on my own feet, I convinced her to skate by herself and I would wave at her every time she skates by.  That’s LOTS of waving, by the way.  But there was happiness in my heart because every time she came around the corner, she would search for me, smile broadly,and wave.

Marie then demonstrated what Angel had demonstrated on Christmas Day.  She started helping people!  She would look for a child, unsteady on his/her feet, and then she would skate backwards and hold his/her hands.  Around and around the rink she would go, sharing her skating skills to help others learn to skate.  Once the child was steadier on his/her skates, she would go around looking for another person to help.  Then, to my amazement, she went up to offer her assistance to a young man with a severe developmental disability.  His skates were turned inward, ankles almost on the ice.  She helped him stand up, and, with his hands on her shoulders, she skated backwards pulling him.  Because of his disability,it was obvious that he was not going to be able to skate independently with any degree of skill.  So Marie stayed with him for over an hour.  They both laughed and when he was called off the ice to go home, he hugged her and smiled.  He apparently could not talk, but she knew he was saying thank you.  She turned to find me, and with a big smile on her face she waved.  I waved back.

I froze that day…my toes were not covered by little toe socks and insulated socks, my hands were not covered little finger gloves and insulated gloves.  I was not wearing insulated underwear, or snow pants, or a warm hat with a brim, or even a snowboarding coat which would have covered my butt so I would have been warm. However, while my body may have been experiencing hypothermia, my happy heart was keeping me warm.

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