Posts tagged ‘Aspergers’

Heat Wave? What Heat Wave?

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Like most of the nation, we have been experiencing a heat wave; temperatures in the 90s and 100s for more than a week.  This could have wrecked havoc in the recreational program for children with disabilities I have been coordinating, as the lovely van of previous posts is our mode of transportation.  Said van does not have air conditioning, or, should I say, any little amount of cool air that would have come out of the sickly air conditioner is quickly usurped by vast, oppressive hot air lingering in the air and not felt beyond the driver.

So, I like to play a little game called “Heat Wave?  What Heat Wave”.  Firstly, before I leave work for the evening, I freeze water bags half full.  (At the Dollar Store I purchase cute, brightly colored little bags which one fills with water. With its carabiner hook, they easily attach to a child’s belt loop.) In the morning, using my intuitive powers of observation, I do not park it in a SHADY spot because at the time of the day we will be leaving, that spot will be sunny.  I calculate where the sun will be and which spots WILL be shady, and I park there.  This enables our little group to later enter a van that has not been cooking in the sun.  I pass out the water bags filled to the top, and attach them to each of the kiddos.  (It is easy for them to find if it is attached!)  Then, as the van commences transportation, which, by necessity, includes entering the sunny zone of the freeways,the anti-heat games begin…

* Playing the “Hot Potato” game…(HOT potato…get it?) students pass around this musical icon.  The original goal is the person who is holding the “hot potato” when the music stops is “out” of the game.  In our game, the person who  is holding the “hot potato” when the music stops gets sprayed with water from a spray bottle!  Now, instead of quickly forcing the item onto the next person so as not to be out, the students take their time passing it, hoping to “win” a spray.  (The seat configuration of the van, in a rectangle, facing each other, is very conducive to this particular rendition of the game.)  This not only cools everyone off, but is also a fun game to play, with lots of laughing and joyful sounds!

* Dancing to the beat of the music, played loudly.  For those who know me and my pension for dancing in the van, this is just an extension of this specialty. The children all bounce and bop, clap and cheer along to their favorite music.  (I, of course, as the driver, save my van dancing for in private, instead choosing to pay attention to driving this precious cargo.)  This creative, exercise inducing activity keeps the kiddos happy and entertained.  After a few songs, as the sweat drenches down their little brows, they take a drink of that ice cold water, and ask for more music, and to TURN IT UP LOUDER!

Good ole fashion water gun play.  Yes, I let them use water guns; small ones that don’t shoot a heavy stream of water.  I keep about 20 filled ones on board, so that when one gun is empty, it can be passed down for another one. (Lest you think the water must get all over the van, need I remind you that it is 100 degrees and any water turns into steam…)

The finale of the trip is arriving at our air conditioned destination, be it the pool, the library, the movies or the mall. Just the sight of the destination is enough to make everyone forget the heat, and to file off the van with great expectations of what is to come.  Of course, after I drop them off, I still have to look for a parking spot in the place where there WILL BE no sun…let’s see…how long will we be there?

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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/

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Cracker Jacks and Oranges: My Kids Have the Best Dad!!!

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I suppose I am prejudiced, because I picked him, but Raymond is a wonderful dad!  I am sure when we dated and eventually married sooooooo many years ago, he didn’t have a clue about the roller coaster ride we were in for.  Sweet little marriage with 2.5 kids, growing old together, holding hands and walking on the beach….forget that!  As the parent or foster parent to 19 children, we have spent our marriage trying to have a positive, loving impact on the the children who have passed through or are in our lives.  I am the flakier, impulsive, eternally optimist slob.  He is the more grounded parent, making sure we have enough money to pay the bills, the house is somewhat clean, and the meals are on the table.  He is like a big kid himself with the children…enjoying playing with them and gently bopping them on their beans when he tells them he loves them. He despises the lime light, and has asked me never to write about him in my blog…hopefully he will forgive me for this post.

During a recent visit to the grocery store, he demonstrated everything I love about him:

The store we shopped at was one in which the discounts are great, but the ambiance is lacking, as are the shopping bags.  This was his domain, as he does the shopping weekly. This is his life…no frills, just get down to business.

Filling the cart with basics, (pasta, spaghetti sauce, bread, cheese, eggs and milk,) he purchased enough to provide for our home as well as for our 2 young adult children who are struggling financially. Because I do not generally go grocery shopping with him, I did not know he did that. His sense of support for his children extends into adulthood. Even though they are out of the house, he is still their “go to” person for flat tires and a listening ear. When he listens, he takes things more serious than I do…for me, there is always a silver lining.  I will try to cheer my child up,  make her/him happy.  However, sometimes children just want to bitch that sometimes life just SUCKS!  He listens, commiserates, and gives them that affirmation.

Because he was shopping with a budgeted amount,  I was playfully reprimanded more than once for putting something in the cart that was not absolutely necessary.  However, he DID justify the expense to put in one special thing for each of our children; Cracker Jacks for Steven, fresh oranges for Dinora,  pasta salad mix for Angel and Lay’s Salt and Vinegar chips for me to bring on the weekend visit with Marie. Most importantly, while getting in line at the cash register, he reached over into a bucket of flower bouquets and spent time picking out the best one for me.  (Yes, he DOES buy me flower every week.)  Practical, loving and romantic.  Isn’t he great?

After filling our cart at the grocery store, despite a long line at the cash register, Raymond was patient.  So patient, in fact, that he let a woman with only a few items pass in front of him.  Smiling, he said “Go ahead of me, please. I’m in no hurry”.  He chatted with the cashier, expressing genuine interest, and he assisted an elderly woman in carrying her groceries to the car. He cares about others, strangers, anyone in need. Is it any wonder he has been a great father to our children?

Any set of parents will experience difficulties of varying degrees.  Raising children with disabilities magnifies those difficulties.  It is a huge financial strain, and any thought of retiring and spending our days walking on the beach holding hands is for naught.  Potential retirement savings have been spent on the care of our children, funding therapists who do not take our insurance, taking time out of work when they are hospitalized, transportation to hospitals and therapists out of state, and other expenses many parents would never dream of having. Quality time between Raymond and myself can’t be spontaneous, but needs to be scheduled. (Rest assured that romance is alive and well with us!) Family and friends are often not our best cheerleaders. (Is that a polite way to put it?)  The challenges have been huge, but Raymond’s support has never been greater.  He has rolled with the punches, as though having a screaming child rescued by paramedics from the side of ferris wheel during a PTSD episode, having a child with twelve personalities (and trying to get along with all twelve), spending the whole day at Disney World in a quiet cove of trees while our son who is autistic collects bugs and worms, never knowing whether to buy girl clothes or boy clothes for your daughter are normal parts of parenthood. It’s is just normal family life to him. And I thank GOD for that…because I could never do this alone…

 

 

 

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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/

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…

Mother’s Day and Delayed Rewards

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Mother’s Day is a wonderful time to appreciate moms, step-moms, birth moms, adoptive moms, wanna be moms and women who love children. Bless you for making a difference in a child’s life! Don’t you get joy from seeing the joy in a laughing child, the shy smile of a child with twinkling eyes, and the serene look on their faces when they are sleeping?  Ahhhhhh……..what sweet little rewards of being with a child…

Most of us know, however, that it is VERY difficult to be a mom and sometimes the REAL rewards are far apart….

When my son Steven was in nursery school, it was a real challenge because of his autistic and ADHD problems. He had been born addicted to cocaine and heroine and his nervous system was “messed up” (my professional diagnosis.) Bringing him was a real challenge as he would kick and scream and cry, yet I did it because he could not hide out safely at home for his entire life with me vacuuming around him. At first, he would  spend most of the time in school hiding out in the “quiet tent”, playing with his plastic reptiles, sometimes soaking in the information from the teacher. Eventually, he sauntered out of his safe space to see what was going on.  He did not join the other children, but he was with them…a huge improvement.  Eventually, nursery school became normalized for him; part of his routine.  He would come home with his little projects; a paper flower, a painted snake, a play dough alligator.  I had learned not to make a “fuss” over these things, but to quietly tell him they were wonderful while his head dropped to his chest, eyes closed.  (He was not a child who could tolerate excitement of any kind.)  He survived two years in that classroom, and I wondered how he would act on “graduation day”, a celebration seemingly out of his tolerance level.  All of the children stood there in their little paper graduation caps, tassels dangling in front of their noses so they had to keep blowing them away.  All of the children except Steven.  The children sang a song, and thanked their moms and generally wowed the crowd with their antics.  All of the children except Steven.  The children walked in a nice, straight line to get their nursery school diplomas; all except Steven.  When all but one diploma had been handed out, the teacher walked over to where Steven was hiding under a chair, butt facing outwards. (If I had been smart, I would have sewed a smiley face on the butt of his pants, but, alas, I had been unrealistically hoping that he would join the other children in the graduation ceremony.)  The teacher bent down with the document and Steven’s  little hand reached out to grab it.  He quickly pulled the diploma out of sight.  Calm and cool under the seat, he had made it! Steven had graduated from nursery school without a tantrum, yelling or screaming.  He graduated in the manner he felt most comfortable, but graduate he did!  What a reward that was for me; I was a proud mother, indeed!

Diagnosed in elementary school with Dissociative Identity Disorder, Angel, has been very carefully placed in specialized classrooms.  Although intelligent and able to do grade level work, he frequently changes “parts”, (his word for his alternate personalities.)  His teachers and teacher aids, bless their souls, understand him well, and manage to educate him, even if it means repeating the same lesson because a different “part” was out that day, or giving his the test over because the “part” that studied for the test is not the “part” that took the test!  He has a baby part which necessitates him to just “veg out” in a large mushroom chair.  On those days, nothing was learned.  His condition has been kept top secret and no unnecessary teachers or others in the school know about it. Fortunately, he has been living a very “normal” life.  I have found one surprising benefit…he has a “Game Show Host” part.  I work with a recreational group of adults with disabilities, and every now and then we play Bingo or Family Feud. Angel, as have all of my children, regularly comes with me.  One day, he asked to be the moderator for Family Feud and his “performance” was beyond hilarious.  Usually a reserved child with groups, all of a sudden he channeled Richard Dawson! He went down the rows of “contestants”, gave each of them a peck on the cheek, and, while holding their hands in his, asked their names and a little about themselves.  The older women, who probably have not had much attention in their lives, giggled and smiled and blushed.  Then, Angel read each question with gusto, and made a “ding” noise when they got it right, and a loud buzzer noise if they got it wrong.  It was sooooooooooo funny because it was so out of character of the Angel that they knew.  This group of adult with disabilities, many of whom live alone on a minimum income with this once a week outing their only time out of their houses, were laughing hysterically that evening. Ever since then, they look forward to Family Feud and “Gameshow Host” Angel! What a reward for me to see Angel’s  give such joy to these wonderful people!

As a graduation present, my daughter, Dinora, and I took a trip back to her birth country in Guatemala.  She had done fundraising to assist with the opening of a soup kitchen in Antigua, and we were there for “opening day”.  We went shopping that morning, taking a little “putt putt” (2 wheeled open air taxi) into the village, giggling all the way as it bounced along. We bought flowers of all bright shapes and sizes, which stuck out of the putt putt on the way back, narrowly bopping passers by on the head. We spread the flowers out in front of  the  alter where a mass was to be said in honor of the opening of the facility. An overflowing crowd of people filled the make-shift pews, and it was a beautiful, emotional mass. Even though it was all in Spanish I seemed to understand every word, and I could certainly feel the emotion in the songs which the Indigenous Guatemalans sang.  After mass, people lined up for the food in their brightly colored clothing. There was my daughter, a young adult, behind the counter, dark hair pulled back into a pony tail, serving food with a beaming smile on her face showing dimples I never knew she had, (or perhaps she had never smiled so brightly.)  She was old enough and cared enough to give back something and help “her people” as she called them. I will never forget the sight of her…sweat on her brow, wiping her hands on her apron, making pleasant conversation in Spanish while smiling that amazing smile…   How could that sight NOT be a reward for a mom after years of raising a difficult teen?

Raising Marie has been the most difficult because of her many serious challenges.  When she came to us, she was street smart at the age of seven.(See post “All She did Was Scream and Say No! No! No!) She had no thought of danger and no social skills.  Although this may sound silly, one of my concerns was the fact that she would litter.  Get a drink; throw the bottle on the ground.  Have a piece of gum; throw the wrapper on the ground. Popsicle; stick thrown in the grass.    Repeatedly, I would have her pick it up and throw it away, explaining that we don’t litter in our family.  Marie could not have cared less…she did not want to be in our family anyway…  It took many months with us before she learned not to litter.  That’s why it shocked me when we were at the mall one day and she casually flicked the paper from her straw onto the ground.  My eyes widened, and just as I was about to ask her to pick it up, she bent down and picked it up, signing to me “I was just teasing you!  I know we don’t litter in this family!”  What a reward it was to hear her say that!  Finally, she felt part of our family!

My most favorite reward I saved for last.  For all of you parents, especially parents with children with disabilities, I will share that there has been no greater reward in my life than seeing my son, Francis, become a successful adult. Despite being legally blind, he has a college degree, is very successful in a job which he loves and through which he is benefitting others, and he recently married a great woman who not only loves him for the wonderful person that he is, but can also drive a car so he won’t have to take public transit to work any more!  There IS no greater reward for a parent; to know that the problems, fun, hard work, love, difficulties and dispersed joys of childhood have come together in a positive way. My son has officially “made it” to adulthood.  Now he can look forward to the rewards he will experience in raising his own children. Then I get the extra rewards of grandchildren!

To all of you mothers and others out there, Happy Mother’s Day!  Beyond the handmade cards, the flowers, the breakfasts and dinners out, and the gifts of the day, so many more rewards await you.  Sometimes you just have to be patient…

He Ain’t Heavy, He’s my Brother

I led a very untraditional lifestyle when I was growing up.  My father, whom I later realized was schizophrenic, had the wanderlust to travel, which our family did for about 6 months of the year. He would remove me out of school and we would take off for various areas of the country, living in our Volkswagen van. ( Although I am sure that today’s public education system would not allow it, somehow I think my father would have taken me out anyway.)

It was quite an adventure for a child like me.  I have a vivid memory of cracking eggs in a big, black, iron frying pan over a campfire in the Badlands in South Dakota.  The rocks the pan was on were not sturdy, and the pan fell sideways with the eggs slowly leaking out onto the pine needles on the ground.  (Clumsy then…still clumsy.) I remember traveling in southern Georgia, driving for miles watching red clay cover everything…the houses, the cars, and even the clothes hanging on the lines.  It was at the beginning of the civil rights movement, and I was uneducated in this area, (probably because I didn’t go to school!) The whole concept of a bathroom for “whites only” was a shock to me.  Did that mean that only people wearing white clothes could use it?  (I’m picturing nurses, dentists, pharmacists…)  I couldn’t use it because I had on my only pair of pants, jeans, and a multi-colored t-shirt. But I had to go to the bathroom baaaaad, where would I go?  Behind the bushes? How degrading!  My misunderstanding of this concept is now a slight reminder of what it felt like be African American in the 60’s. I also have the memory of  a bear at Yellowstone Park coming onto our campsite to eat our dinner as we all huddled in the car. My brother, Curtis, was upset because he had left a package of Cracker Jacks on the picnic table.  We had to restrain him from leaping out of the car to get it.  Afterwards, I was not so keen to sit by the campfire…

But most of all, I remember my constant companion; Curtis.  He was four years younger than I was, and he had been born with Rubella Syndrome; developmentally delayed, cleft palate, legally blind, and severely hearing impaired.  He was my buddy.  Because my dad was extremely frugal, (ie obsessive compulsive disorder frugal,) I did not have many toys to play with.  So, in addition to reading a lot, I played in our surroundings with my brother.  I have a memory of  sitting by a stream, sun shining down on the water through the leaves on the trees. Curtis was happily splashing about in the shallow water.  I was looking for rocks that somewhat resembled people.  (They were no Barbie dolls, but some kind of looked like Alfred Hitchcock and Potato Head.) All of a sudden I heard a whoooooosh!  Curtis had ventured too far into the water and the current started to carry him downstream!  Fortunately, I had long, slim legs (in those days,) and with a few strides, I picked him up by the back of his pants. He was laughing heartily.  To him it was a real adventure.  Like the poor person’s substitute for a ride at Disneyland!

We actually had a lovely childhood together. I had to carry him everywhere because he could not walk sturdily.  Carrying him was just a natural way of life for me.  I don’t know why, but I never thought to be embarrassed by him, (although his screeching and attempt at speech WAS pretty scary).  I never ever thought of him as a burden.  He was just my buddy, Curtis.

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My parents rarely took pictures.  (The money thing again…) But I do remember ONE picture.  It was a picture of me and Curtis, standing in front of Mount Rushmore.  I was characteristically giving him a piggy back ride.  The photo shows Curtis, looking over my shoulder, eyes squinted shut by the glare of the sun.  I was wearing a stupid, treasured, red velvet derby hat, (you know, like jockeys wear.) As the dead presidents loomed behind us, I gave my characteristically stupid, toothy grin, (like all children do when their parents ask them to smile.) And on that day, I first heard the song from Neil Diamond which fit my sentiments exactly: “He Ain’t Heavy, He’s My Brother”.  It was a powerful moment to think that someone had put into words what my life was like.

I was so very lucky to have been raised the way I was because it formed my personality, my temperament, and my compassion for others. I personally cannot take credit for the way I live now, fostering and adopting children. I am not selfless, nor amazing, nor wonderful, nor any of the other adjectives readers have used to describe me. I am simply living my life the way I was raised and it is a wonderful life!

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

 

He Ain’t Heavy, He’s My Brother Lyrics

The road is long

With many a winding turn

That leads us to who knows where

Who knows where

But I’m strong

Strong enough to carry him

He ain’t heavy,he’s my brother

So on we go

His welfare is of my concern

No burden is he to bear

We’ll get there

For I know

He would not encumber me

He ain’t heavy, he’s my brother

If I’m laden at all

I’m laden with sadness

That everyone’s heart

Isn’t filled with the gladness

Of love for one another

It’s a long, long road

From which there is no return

While we’re on the way to there

Why not share

And the load

Doesn’t weigh me down at all

He ain’t heavy he’s my brother

He’s my brother

He ain’t heavy, he’s my brother

He ain’t heavy, he’s my brother

written by Bobby Scott and Bob Russell

performed by Neil Diamond in 1970

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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

Beyond One’s Own Problems

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I work with a social/educational/recreational group for teens with disabilities.  When first getting this group together at the beginning of the school year, I asked them what they wanted to do as part of our program.  Every single one of them said they wanted to “help other people”.  Here are students with a variety of disabilities and medical needs, and they wanted to help others! They were mature enough to look beyond their own problems to the problems of others.

Various suggestions were tossed about; opening a soup kitchen, visiting with the elderly in nursing homes, working at the local pet shelter, and so forth.  I suggested the easiest thing to do would be something we could do as a group within our program.  They chose making sandwiches for the homeless.

Every other Saturday we meet.  Yesterday we had some social skills activities, some recreation, (does anyone remember the game Simon?), and then they all baked cookies and made sandwiches.  As they were working, they chatted happily, teen music playing in the background.  When one song came on, they all broke out into what I call “dancing like you are riding a horse”.  (I am sure all teens will know what I am talking about, even if parents don’t.)  As soon as the song stopped, they all went back to their sandwich making. It was hilarious!

They worked as a team and made 165 sandwiches and twelve dozen cookies. As they worked, they talked about who might get to eat them, what kind of bad luck may have fallen upon that person and so forth.  They talked with much empathy, and not once during their conversation did they mention their own problems.  They were caring about the problems of others.

After the sandwiches were made, I drove up to Traveler’s Aid, a local spot where the homeless hang out.  The kids got out of the car to bring the sandwiches and cookies in.  They helped each other.  One girl in a wheelchair held a box of sandwiches on her lap while a girl who is blind held onto the wheelchair as her sighted guide.  (Instead of a using a guide dog, she was using a guide wheelchair!)  I stood back as they went into the building and delivered the goods. They were so proud.  The large group of people milling about parted like the Red Sea, and left them easy access to the front desk where they would be dropping the food off.  They walked and wheeled to the front desk which, fortunately, was wheelchair accessible.  The crowd murmured appreciatively, politely, thankfully.  The kids faces beamed as they turned around and came back to the van.  They were no longer disabled, but capable of helping others.  Suddenly, their problems were not as bad as the people who thanked them; people without shelter and food.

 

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

Little Toe Socks inside Insulated Socks

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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.

Lets Agree to Disagree…Mental Illness and Violence

I recently received a response from a blog colleague who’s beliefs are different than mine.  It is normal for people to have different views on things, and everyone’s views are welcome. This is my version of  agreeing to disagree…

Dear 5KWD, I wonder if you would have any insight on the following. After doing a smattering of research I learned that virtually every mass shooter on record was taking antidepressant psychiatric drugs when they “went off”. The news media and many posting here are examining the mental illness angle, but we know that depression, asbergers, etc, does not cause homicidal behavior. However, it seems very plausible to me that these FDA approved psychiatric drugs, which have known side effects, may be inducing this behavior. I think it’s the drugs, not the mental illness. This makes way more sense to me than the idea that sometimes formerly quiet, law-abiding people are randomly “going off” and shooting rooms full of children.  artandlifenotes.wordpress.com

 

I agree that every mass murderer may have been on antidepressants.  It would go along with my theory that they have underlying psychiatric conditions.  All of my adopted children are on psych meds.  My oldest daughter has attention deficit disorder.  Prior to medication, she couldn’t pay attention, she was flunking school, she couldn’t pay attention to read a book, and she developed sever anxiety over her inability to function “normally”.  Once on medication, (which includes an antidepressant,) she brought her grades up to straight A’s, attended college, and has a career in her chosen field.  I understand that some people would say that the side affects of medication would outweigh the benefits, she calls me from time to time to bring her medication to work because she forgot it, and she cannot concentrate to do her job. My middle son, who was born addicted to cocaine, has been diagnosed with a variety of mental illnesses, but I personally like to give him just one:  his brain and wiring is screwed up due to his prenatal exposure to drugs.  As an infant he would flail about and injure himself, he rarely slept, wouldn’t eat, and climbed out of his crib by 9 months old. (He couldn’t walk, but he could climb!) He would run around destroying anything in his path.  Without psych meds, it would have been impossible for him to attend school because he surely would have climbed out the bus window!  My youngest son, who was severely abused in his early childhood, has Dissociative Identity Disorder, (previously called Multiple Personality) a condition in which a child withdraws within himself/herself when abused, sort of “blacks out”, so to speak, but another part of the brain still feels the affects of abuse.  That other part remains in his “psyche”.  Hidden.  Buried. Showing itself from time to time in an angry, violent outburst, often requiring hospitalization. Without psych meds, he would not be able to function as well as he does.  He would be encompassed by deep depression and obsessive thoughts.  My youngest daughter has severe attention deficit disorder, and cannot sit still or pay attention without medication. Similar to my youngest son, she was abused as a child. Her hidden demons come back in Post Traumatic Stress Disorder, tearful, angry aggression, often on herself, but sometimes against others.  Without psych meds, she would not be able to function.  She still has PTSD and “episodes”, but they are far less frequent than when she was not on medication and it would be a daily thing.

I understand people have different opinions about psych meds, but in my family, without them, it would have been impossible for my children to live life “normally”. I know that there may be side affects, but the side affects are far less intrusive on their lives than their mental health issues. The doctor always goes over the possible side affects, and not a single child has ever indicated they bother them.

Regarding your concept of not believing the idea that sometimes formerly quiet, law-abiding people are randomly “going off” and shooting rooms full of children, again, I can only point to my own children.  Childhood abuse, even verbal abuse, and non-loving parents, can permanently harm a child’s developing psyche.  Permanently.  Even counseling and medication may not be able to fully quiet the demons hidden in a child’s brain.  My son, who is the sweetest, nicest, most generous boy, often displays his “angry part”, a part so vile and violent that it reminds me of Linda Blair in the Exorcist.  He is unrecognizable and so angry that violence surrounds him…sometimes resulting in a call to 911 for assistance with restraining and hospitalization.  For my daughter with PTSD, her episodes are more invasive.  The slight touch, smell, or thought can cause her to fall back into anger of abuse, and she dissociates and becomes violent.  She is not herself…well, that’s not true because even when she is having flashbacks she is herself, but the self as a young child being abused.  Regarding the randomness of violence, case in point:  she was recently arrested for “assaulting a police officer with a deadly weapon” when he charged towards her to get her to stop flailing about and screaming.  (She ripped a board off the wall and tried to ward him off.) She is living in a restrictive, “locked” facility with staff trained in behavior modification and restraints, but her behavior has horrified and shocked them.  It is not her fault, she cannot control it, but she is very violent.  Other people looking at her would never think such a sweet, friendly child could harbor such demons.

I know many people not exposed to individuals who are mentally ill to the serious degree of my children would find it hard to believe they just “snapped”.  No one never knows if a person who appears to be “normal and quiet” is really “normal and quiet” underneath.  I believe wholeheartedly that one has to have a mental illness, even if undiagnosed, to be a mass murderer. I believe no one in his/her “right” mind could possibly do such a thing!  Of course, this is just my one biased opinion.  I can understand, though, that there are different sides to every story.  Let’s just “agree to disagree”!

The Apple Tree: Raising 5 Kids With Disabilities and Remaining Sane by Linda Petersen.

Yes, I DO have a husband!

I write so often about my adventures with my children that I rarely mention that I have a husband. I love him to pieces, and he is a hard worker and great with the kiddos.  The reason why I don’t write about him…well…he’s kind of boring and not very interesting to write about.

It is very important that we, as the couple that hold the family together, spend quality time with each other.  If we do not put each other first, raising children, especially children with disabilities, would be difficult.  We need bonding, relaxing time together, and we manage to get away for at least a night or two every month,

We went away last weekend to a little cabin we have in the woods of New Hampshire last weekend.  My dad actually purchased this cabin for us when Steven was only a year old.  We knew from his autistic-like behaviors that we were not going to be able to vacation as a family very well at any hotel unless it had padded walls, (which I think I’ve only seen in those motels advertised for sexual adventures!) This cabin is where we have vacationed as a family, swimming in the nearby lake, boating, tubing and water skiing, hiking in the woods, fishing, snowmobiling, making camp fires, and just relaxing as a family.  It has served us well through out the years, and my husband and I  now use it sometime when we get away.  I personally prefer a 5 star hotel, room service and a massage, but that is rarely in our budget…okay the truth is it is NEVER in our budget, so the cabin suffices.

My husband, bless his soul, loves to putter around the place fixing all the little things.  Last weekend he cleaned out the crawl space under the house and found lots of dead mice, who ate our mouse poison and didn’t make it out of the basement in time; we need longer acting mouse poison so they can make it home and die in front of their families.  My husband also found TERMITES.  The house is surrounded by woods with lots of dead trees littering the landscape. WHY would the termites choose our house to eat?  It’s not like it is warm in there because there is no heat.  Why are they drawn to eat the only thing they shouldn’t eat?  I’ve come to the conclusion termites are like children. They won’t eat the huge pile of spaghetti offered to them, but instead want to one by one eat the limited supply of meatballs in the pot. (However,unlike the termites, we won’t kill our children to save the meatballs.)

Without the kiddos with us at the cabin, I was slightly bored!   Of course, my husband and I make a lot of time for loving and such, but that still leaves several hours of the day where he is puttering around and I am bored. I am not a good “relaxer”.  I usually need to be doing something, (thus the reason I have 5 kids in the first place!)  Without cable television, I am forced to…do nothing.  I have no hobbies, and I don’t generally like to read books.  I have been adverse to reading ever since I started reading a Danielle Steel novel in 1982 and never got to finish it because the kids always needed something and I would have to stop mid-chapter.  So, there I was, sitting on the couch, actually feeling a little sorry for myself because I had nothing to do.  Then, VOILA!  I remember that my youngest daughter had downloaded games on my cell phone!  So, there I sat all weekend, playing Scrabble on my phone.  It was great!  I beat myself 53 times!  I was a happy camper!

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