Archive for the ‘disability’ Category

What’s In My Purse?

hospital5

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…

Give a Pat on the Back to Parents of Kids who are Autistic!

th

Parents of children with autism will never tell you that raising their child is easy…it’s not! I joke around, look for the silver lining, take things in stride, and present a smiley face to the world. However, raising my son, Steven, has been, and continues to be, an extremely difficult parenting challenge.

Memories of how hard it has been flooded back to me when my hubby and I went away for a romantic weekend at our little cabin in the woods of New Hampshire. With the sub zero weather whirling around outside, we were sitting on the couch sipping hot chocolate with lots of tiny, melting marshmallows. (Okay, maybe HE had some Kailua in his, but mine really DID just have marshmallows!) As the heat rose up from the small grate on the floor, I was transported back to the time when we first purchased the cabin. Because Steven had such severe sensory issues and taking him to a regular hotel for a regular family vacation would have caused a regular catastrophe, we sought out a calm location to which he could become accustomed. Thus, the family vacation cabin was born! He was only about a year old when we bought it, and he soon adapted well…he continued to wake at 4 in the morning to run around the house (which was carefully modified for safety.) He continued to refuse to eat any textured food, subsisting on cans of Chocolate Ensure. He continued to hide under the bed if any company came to visit, or if it was too windy out, or if the clock ticked too loudly or for a variety of other reasons known only to him. He would curl up in a ball under the kitchen table if there was too much noise, or light, or if he just plain felt like it. However, he also had the little pond behind the house where he could catch frogs, turtles and snakes for hours…HIS idea of a great vacation! In other words, he behaved just like he did at home! Our family vacation home was successful!

We enjoyed, and continue to enjoy, many years of quiet, restful activities on this little house in the woods. The only reminder of a behavior to which we could never accommodate… Steven’s self-abusive “episodes”…is a scar on his forehead. It has faded over the years and resembles a tiny tic-tac-toe board.

Last weekend, sitting on the couch enjoying my hot chocolate, I glanced over at the heating grate and shuddered, remembering the one time he was so out of control that he banged his head on the heating grate before we could restrain him. A hard, deliberate bang on the only dangerous spot in the house. It was a reminder that as hard as we tried to have a “regular” life with Steven, we could not always keep him safe…

That is not to say that this is a complaint. It’s more of an observation. Raising kiddos who are autistic changes a family’s life forever. If you know someone who has an autistic child, give them a pat on the back. They probably haven’t had an easy life…

**************

To read more about our life as a family, 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

Out and About with a GPS!

71LlmNTbJfL._SL1500_

After my last disastrous attempt to use Mapquest directions to find a location, my husband had pity and surprised me with a new GPS. (He’s a heck of a great guy!) Marie and I have been using it to go places; new doctors, apple orchards and so forth. Like any curious child, Marie not only wants to know WHERE we are going but HOW to get there, and the inevitable “Are we there yet?” I don’t know HOW to get there, and even if I DID, to describe the actual directions in American Sign Language would be dangerous while driving, (especially because two hands are needed!) So Marie latched onto the GPS as though it actually was a small satellite guiding us. (Somehow, I think I may have misinterpreted exactly WHAT a GPS is in ASL to her.)
Hiding the screen from me so I could see, Marie excitedly gave me the directions street by street by street. In order to make it more like a fun “game”, I made the mistake of turning the sound off. The problem was, either she was a little late in signing “Left at next street”…or, more likely, I was paying intermittent attention to the road and missed her directions. Our trips ended up more zig zaggy and lengthy than I would have preferred. I confess, I cheated. When she wasn’t looking, I turned the sound on without her knowing. Now when we use it, she still gives me the directions street by street, thinking she is the sole direction provider. I no longer miss the proper street because I’ve already been prewarned by the GPS, and Marie blissfully thinks she is doing a magnificent job guiding us to our location.
Ohhhhhhh, I’m a sneaky mother….

******

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/

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.

I Don’t Think Animals Kiss…

 animals-kissing-animals--large-msg-132822713408 

One day several years ago, many months after Marie came to live with us, my husband, in a good mood, came into the kitchen, swooped me backwards, and gave me a passionate kiss.  When we had finished, I noticed Marie standing there, gaping, eyes wide, with a shocked look on her face.

“What was THAT????’ she asked in American Sign Language.

“A kiss,” I told her.

“No, no”, she signed back, “a kiss is a little peck on the lips” she said as she came over and demonstrated one on the dog. (Heaven knows a teenager would never kiss their MOTHER!)

“There is a different kind of kiss when you really love someone like your husband” I said.

“That is amazing!  How did you LEARN to do that? ” she asked plaintively.

“You don’t learn it, you just feel it.  It is natural when you love someone,” I explained to her.

“Well,” she huffed, “I’m going to wait until I’m 17 to do that,” she said as I said a silent prayer to myself that I should be so lucky for her to wait that long!

I laughed inwardly at her innocence, this worldly child who, because of her child abuse knew the mechanics of sex more than anyone her age.  I doubted she ever saw anyone really “in love” before, and she had never seen anyone kiss passionately, which really surprised me.  The more I thought about it, though, I realized she hadn’t been exposed to it in her young life and the only other way she might know would be from watching television.  Because of her deafness and lack of early education,  she had a low reading level and was not able to understand the captioning on tv, so she did not generally watch comedy or drama series.  Her favorite tv channel was (and still is,)  the Animal Planet where captioning is not really needed to enjoy the shows.  What wonderfully active lives those animals live!  Exotic lives!  Interesting lives!  Dangerous lives!  Sometimes romantic lives; nuzzle noses, lick, bite, cuddle, hug, dance and flap their wings as a means of showing affection.  But a long, romantic, “mushy” kiss? I think not….Marie had to learn that from her parents…

 

 

 

*****************

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/

“It Smells Like Flowers and Sunshine”

DSC_00551334695712_DSC_0055

Working this summer running an educational/recreational program for kiddos with disabilities, I have been giving my good ole, 12 passenger van with a wheelchair lift a run for its money.  Surprisingly, despite numerous past mechanical difficulties, it has become a war horse for transporting us throughout the state to many wonderful adventures!  Because it is an industrial type van, it supplies the children with a lot of extra bounces, creaking, twists and turns.  (It is good thing they are all snapped down into booster seats and seat belts or by now I would have many little dents in the ceiling from their bouncing heads.)  They laugh and screech and go “weeeeeeeeee” as though they are on a ride at an amusement park. (I dare say, some of the children have never experienced such excitement…)

Over the weeks, I have become somewhat lax in van cleanliness…food wrappers, discarded art projects, broken recreational items (such as water guns and deflated balls,) and, EWWWWWW, old clothing left by the children, litter the floor.  I KNOW it is not proper, but, somehow, I am so busy with the program arrangements, supervising the children and driving them back and forth from their homes that at the end of my 12 hour day, that I am too pooped to do anything but sit in my lounge chair at home and watch Judge Judy.  I did the only thing I could do under the circumstances…purchased a couple of cute, little, purple, sweet smelling air fresheners for the van.

The day after this ingenious addition, the children filed on one by one for a trip to the aquarium.  Many of them commented on the smell, including one little girl who is blind who remarked “Do you have flowers in the van?  It smells beautiful, like flowers and sunshine!”  Thus proving to me that those Febreeze commercials where people are put into smelly, messy enclosures really DO smell only the Febreeze!

I Get All of My Exercise in the Driver’s Seat of My Van

article_photo

My daughter, Marie, is in a residential school, out-of-state.  I drive the hour and a half to see her at least once a week, sometimes twice.  If you have read my book, you know that I HATE to ride.  (I spent my childhood zig zagging across the country.) Driving is no better, and I need to focus or I will fall asleep.

Talking books on tape used to keep my attention for the ride, but taped books are getting harder and harder to find.  Music has become my new listening alternative.  Not just ANY music…noooooooo….only the rock music of my youth; Proud Mary, Sweet Caroline, Born to Run, Papa was a Rolling Stone….   Of course when one hears this music, one’s body can’t help but “dance” to the beat and one’s mouth HAS to sing along, and I am no exception.  The fact that I am in a van somewhat limits my moves, but not altogether.  While driving down the straight highway at 55 miles per hour, (the fastest my 2002 van can manage,)  I can safely swing and wave my arms, (alternately, of course,) bounce, tap and kick my left leg, twist at the waist, and move my shoulders, and do so with great veracity in time to the music.  I have found this new driving routine to be loads of fun helping to both pass the time AND exercise!  Although I am not self-conscious, and the stares from others would not bother me,  I am so busy looking at the road that I don’t see them! Reality comes into play every time a tractor trailer truck drives by because our seats are at the same height.  I am sure that the driver is mortified at the sight of me, as I am no substitute for the sexy young woman for whom he was looking, but what sexy young woman would be driving a huge old old, rusty van like mine anyway?

As the summer approaches,  I will be singing with the windows down because the vans air conditioning met an untimely death last summer.  Most people DO have air conditioning and thankfully (for them) their windows will be closed and the buzz of the air conditioning will drown out any ear shattering notes coming from my van.

If you see me doing my “moves like Mick Jagger” on the highway, I will be too busy driving and exercising to see YOU. However, if you happen to see a somewhat middle aged woman, hair wild and wind blown, climb her way down from the seat of a very old, high van seat, and she has skinny arms, a skinny left leg, tiny waist but a big butt and plump right leg, smile and wave because that would be me….

**********

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/

***********

 

I Won’t Wear That to Church Anymore

I’m just returning from church.  I go to an inspiring, welcoming church, which I love!  Everyone is friendly, and we make a special effort to include people with disabilities.  We have pew cut-outs throughout the church for people in wheelchairs.  (After all, just because you are in a wheelchair does not mean you want to be relegated to the back row, or, even WORSE, the front row.)  We have a sign language interpreter and large print materials for the church service.  If a person who is totally blind attended, we would no doubt get the materials in Braille.  People with developmental disabilities, as well as people with mental illnesses are welcomed with open arms.  Having the children I do, it has been a God send (literally) for our family.

The congregation members help out during the service in many roles, and today I was helping to serve the Wine.  The people serving communion stand on a step while serving the bread and wine.  Learning from an earlier experience when I fell while trying to get a group together for a photo, I always firmly grip the hand rail while walking down the few steps. (Falling while taking a picture is understandable, but more care needs to be taken with the wine. I am sure it would stain the carpet terribly!) When offering the wine to the congregation members, I frequently have to bend over because I am tall and on a step, and they are often shorter.  Today, after I bent over the first time, I noticed that my shirt parted from my body in the front, and everyone had a clear view down to my belly button. (Well, they COULD have seen my belly button if my big breasts had not gotten in the way.)  I was mortified!  While I do not embarrass easily, once I notice something askew, of course I have to fix it.  So, I did the only thing I could do under the circumstances; I squatted for each person.  Do you know how incredibly hard it is to hold a squat at one particular level and then move that squat up or down depending upon who was next?  If I were athletic, it may have been easy.  But I’m not…    I felt like one of those baby crib toys, all scrunched up (squatting low) and then being pulled straight, (standing tall) and while music plays it slowly moves up to the low squat again.That’s the way I was today; up and down and up and down all to the beat of the choir’s music.

I will never wear that shirt to church again…

********

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/

“Look Mom, no trees!”

Skiing460

My son Francis is amazing!  Although legally blind, he has led an incredibly successful life.  I think one of the reasons he has done so well is because he was raised without having a disability. If that sounds odd, you have to define disability as not having the ability to do what one wants in order to lead a full and happy life.  With proper modifications and technology, Francis has never been held back in any area of life.

Of course, we have chosen achievable goals when he was growing up. One of the many topics we tackled was how to fit sports into his life. Of course he could not play baseball or soccer, but he could be on the wrestling team and swim team. (He excelled and won championships in both areas.) The one sport that I worried about  was his skiing.  He learned at an early age to traverse the White Mountains in New Hampshire with a sighted guide skiing in front of him, usually his dad.  This petrified me because I was afraid he was going to ski into a tree and die. The fact that he is still alive and kicking today is proof that he didn’t, but that did not lessen my motherly concerns.

When Francis went to college at Cambridge in England, he had the good fortune to make many friends with whom he could travel all over Europe.  One day, I received a photo via e-mail, accompanied by the comment “Look, mom, no trees!” The photo was one of  Francis in ski gear, standing at the top of a ski run in the Alps.  The sun reflecting off his dark goggles was no match for the shining smile on his face.  There were no trees to ski into because they were above the tree line.  He was safe!  And, most importantly for a mom, he cared enough to send me a picture to SHOW me that he was safe.  The little cockles of my heart warmed at the thought…what a considerate son!

It wasn’t until a few months later that I saw the news of a large avalanche in that same area and three people were presumed dead.  DEAD?  I immediately remembered that beautiful picture of my thoughtful son, and I laughed.  (Yes, I laughed.)  That picture shows that my son does not have a disability because he had the same chance of dying as the skiers buried in the snow.  He is truly successful!

*******

Links to my book:

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/

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…

snake-Dev-Khalsa

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

Tag Cloud

Follow

Get every new post delivered to your Inbox.

Join 10,400 other followers