Posts tagged ‘blind’

How NOT to Raise a Child with a Disability

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When your child is a toddler, focus on all the things he can’t do. He’s not walking as soon as other children. He’s not talking as good as other children. It is embarrassing to take him out in public because everyone comments on his looks. Blame your spouse for his disability. Or, equally worse, blame God. Whey has He forsaken you? Why has He saddled you with this tremendous burden? Spend your child’s infant and toddler years lamenting the sadness, disappointment and loss.

As your child gets older and goes to school, always blame the teacher or the principal if he can’t do something. After all, it MUST be their fault. They are discriminating against your child if they try to make him behave or actually complete his school project. He has a disability! Doesn’t that come with the right not to have to do homework or obey the class rules?

Try to force the sports teams to let your son play, and they will. But your son cannot play soccer/baseball/basketball as well as the other children and he is humiliated by his poor skills and the disappointment from the other children when their team loses. Make sure to yell at your child for his poor performance. After all, if he didn’t have a disability, he would have made a great soccer/baseball/basketball player, and it is a horrible loss for you to admit that your son is a failure.

Argue with your partner/spouse over your son. You don’t both agree on the best style of parenting, so each do your own thing and teach your child that he is a constant source of distress between the two of you. Possibly get divorced. And blame your son. If he hadn’t been born, you would have had nothing to argue about.

You see your son as worthless…he can’t play sports, he gets in trouble all of the time in school, (as you have been his best advocate that he doesn’t have to follow the rules because he has a disability,) and he has minimal social skills. Do not be surprised when he turns to drugs.

He assumed that he was SUCH a disappointment that you would be better off without him. Do not be surprised when he takes his own life…

This rant follows a recent suicide of one of the students who is visually impaired with whom I worked. Like all adults who were a part of his life, I wonder where I was to blame. I tried in vain to impart my enthusiasm for a bright future for him. I tried in vain to make the parents realize that by setting their child apart they were denying their child an equal part in society. I tried in vain to tell the parents that their child may not be good at basketball, but he could swim spectacularly! Maybe he couldn’t play soccer, but give him a bowling ball, a bowling ramp and a lane of pins and he could get a strike two times out of four. He had such a way with younger children that I imagined him a teacher one day. But his parents did not see it. They only saw their own disappointment. Their own embarrassment at having a child who looked different. Their own anger at each other for the having “caused” this disability. They only saw their own feelings and never once stopped to think about how this was affecting their child. Their child who would never become the teacher I envisioned.

My suggestion to parents of children with disabilities is this: your child is a wonderful creation who, for whatever reason, was born with a disability. Rejoice in your child! Look for the things he CAN do, and incorporate them into your daily life. Plan for his education in a realistic, non-judgmental manner. Sure the teachers may screw up once in a while, but haven’t you also, at one time or another, misjudged your child? Try to keep the peace at school. You only meet with the teacher once in a while, your child has to go to school every day. If you and your spouse disagree over parenting, see a counselor who can help you work together. Most of all, find something in which your child excels and enjoys, and fly with it! Everyone wants to have success in life, and your child is no different. Whose to say one type of success if more important than another?

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For more suggestions on how to raise a child with a disability, 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…

Another Year, Another Memory

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(cartoon reprinted from Readers Digest. Two angels are standing on Cloud 8 with the caption “Well yes, I’m happy. But I could be happier…) Don’t let this be you!

A new year has begun! Whoopee! I am so excited to see what great things the new year brings! I only have two annual New Year’s resolutions:
Resolution #1: I think back on last year, and am grateful for all of the wonderful little things that worked out well.

*Found out about Orange Leaf yogurt place where I could get healthy sugar free, non fat yogurt with my choice of toppings, m&ms, hot fudge (yum!), gummy bears, snickers and all the whipped cream I can fit!

*My daughter, Marie, has finally found a counselor trained in trauma and abuse who is fluent in American Sign Language. After all these years! FINALLY she is able to make some progress in this area. As her mom, I have been the only one she has confided in, and it will be nice to share that weight with a professional.

*I loved watching The Good Wife! And Storage Wars! And Survivor!

*I lost a pound and a half. Not quite my goal of 30 pounds, but at least it is in the right direction!

*I have two new grandchildren on the way with a whole lifetime to enjoy them. (Long live nana!)

*Another year accident free…where’s my check from Allstate?

*Another year major illness free! (The hubby had a bout with colon cancer a few years ago, but has been fine ever since surgery because it was caught early.)

*My daughter, Dinora, has a great new job, a fiance, and a cute little house.

*My son, Steven, (who has autism and ADHD,) has a wonderful new fiancee whose OCD keeps things structured and in place for him, stabilizing his disability. (There IS someone for everyone!)

*During several great movies, (The Butler, Gravity, and all of the Pixar films,) I ate plenty of buttered popcorn and jelly bellies. (Ahhhhh! May be the reason I didn’t loose more weight.)

*My son, Angel, who has Dissociative Identity Disorder, has miraculously made it through high school without seriously harming anyone. (Except for the refrigerator he overturned on a teacher…which turned out to be the teacher’s “fault”. In Angel’s IEP was the stipulation that he cannot be yelled at lest the “angry part”, over which he has no control or memory, comes out to protect him, a reflex reaction.) Life with Angel is quite interesting…

*Our cars, both over 8 years old and with more than 150,000 miles each, are still running and getting us places.

*My son, Francis, who, despite his blindness, is still making boatloads of money in the Silicon Valley computer industry. (On less child I have to support.)

*All in all, another successful year with more ups than downs.

Resolution #2: I look forward to the coming year with optimism and enjoyment. Hopefully it will be another successful year with more ups and downs, and I will make memories to put on my list for #1 next year!

Hopefully, your life will also have joy, happiness, love, and some interesting foods to eat!

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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

We’ve Come a Long Way, Baby!

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(warning: contains disturbing, graphic content)

My brother was born in the 1960s at a time when children with disabilities as extensive as my brother’s (Rubella Syndrome, cleft palate, severely developmentally delayed, legally blind, hearing impaired, heart condition, etc.) were placed in institutions at the “suggestion” of their doctors. Without knowing the specifics, all I knew was that my mother was devastated and took to her bed sobbing, my father very angry and was rarely home, and my brother cried all of the time because he could not eat through the gaping hole which was supposed to be his mouth.

My mom chose not to follow the doctor’s “orders”, which was highly unusual for her because she was a person who NEVER disobeyed authorities. Yet, she knew in her broken, sad heart that “putting him away” was not the right thing to do. Even if her life was changed forever, Curtis would remain at home. She slowly got over her devastation, and my father was home more often and Curtis was fed with an eye dropper. I loved feeing him as he gently gurgled and mewed like a baby kitten. My brother was a part of our family, and went on to live a full and exciting life as a member of our vagabond family.

My dad loved to drive and my brother loved to ride. He especially LOVED tunnels. Dad would go out of his way during our travels to go through them, such as the toll tunnels in Pennsylvania. Riding through the darkness, hearing the swoosh of the engine motor and the echoes of the other cars would send my brother into fits of giggles. Curtis also loved the excitement of paying tolls. Hand over hand, I would help him lean out the passenger window to drop the coins into the basket, and he’d clap his hands with delight. Life was great, and Curtis was always a full, participating member of our family and our community. Our life was “normal” to me.

It wasn’t until I went for my first job interview as a rehabilitation professional at a state institution that I learned what my brother’s fate would have been had my mom decided to do as her doctor advised. The first and LAST ward I toured scarred me for life. The “dorm” was rows, 20 deep, of metal beds bracketed to the floor. Most had some semblance of a sheet on them, some not. “Blankets”, or what USED to be blankets before they became worn and dirty,were randomly thrown on the bed. Many were stained with a dark brown substance that I assumed was NOT dirt. In the “kitchen”, rows of large baby bottles filled with a mushy substance substituted for a lunch.

It wasn’t until I went into the “day room” that I became physically ill. The smell of vomit, feces and urine attacked my nose so I wanted to hold my breath. In the large, tile room, with no windows to even indicate it was day outside, sat about twenty-five people, looking more like wild creatures. All ages, men and women, young and old, sat and rocked their bodies, flailed about and screeched. Hair dirty and tangled and disgusting. Eyes either glaringly wild or no emotion at all. Most naked or with minimal clothing. There was a large drain in the middle of the floor where human waste congregated; feces, vomit, urine. (Apparently, a large hose was used to “clean” individuals and it was all shoved into the middle of the floor, hopefully to go down the drain.) No attempt at programming. No attempt at socialization. No furniture because, I was told, they would either throw it, break it or try to eat it. Most of the residents, I was told had never see life outside of the institution, coming to the institution as infants. (Thoughts of my beloved brother flashed through my mind.)

It was obvious abuse was rampart on the part of the residents, swatting and clawing at each other as I stood there. A few residents, deemed the most violent, were in shackles. The two ward attendants were obviously immune to the sight because that would be the only way possible for a human being to do their job.

I left the tour, vomited and cried all the way home. The scene still haunts me.

FORTUNATELY, this was during a time when family members and professionals started to come together in outrage to demand better treatment. To demand actual services and activities and better living situations. FORTUNATELY, these groups sued the state to hold them accountable for these horrendous living situations.

The passage of even more legislation allowed four unrelated individuals to live together in a house without having to get zoning variance. Group homes were born and life changed forever for individuals with developmental disabilities!

Thank God that the pendulum has swung the other way. Now, individuals with developmental disabilities are recognized to be individuals of equal value and respect. They can choose their own clothing, what they want to eat, where they want to go, and what they want to do. You can see them out bowling, delivering Meals on Wheels, and eating at local restaurants. They are shopping for food at the grocery stores, attending churches of their choosing, and going on cruises. They can go rock climbing, paragliding, and ice fishing. They can order sandwiches just the way they like them, and drink frozen strawberry Daiquiris. They are living life to the fullest, with staff no longer concerned with cleanliness, but with focusing on dignity, free will and respect. Next time you see a person with a developmental disability in the community, smile at them. They will probably smile back, at last!

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To read more about my life with my brother, 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

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…

Is There a Cupboard for Cans of Food?

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Actual conversation overheard while I was driving children who are blind to activities during the summer program with which I have been working:

Her:   “What street do you live on?”

Him:  “Main Street”, (which is 5 miles long.)

Her:  “What color is your house?”

Him:  “Yellow”

Her:  “YELLOW?!?  I used to live on Main Street in a yellow house.”

Him:  “Wow!  Maybe it is the same one! Did it have two bedrooms upstairs and one bedroom downstairs right next to the bathroom?”

Her:  “YES!  That sounds just like the house I used to live in! Does it have a driveway on the side of the house with bushes by the front steps?”

Him:  “YES!  How about a dining room where it can fit a table that seats ten people?”

Her:  “Oh, my family used to get all together there on Thanksgiving.”

Him:  “MY family gets together there for Thanksgiving!  Did your bedroom have a closet door that got stuck?”

Her:  “YES!  That was my closet door!”

Him:  “And how about a creepy basement”?”

Her:  “YES! YES! I was always afraid to go into the basement.  How about…does it have a  cupboard in the kitchen where you could keep cans of food?”

Him:  “OH MY WORD!  YES!  That is too much of a coincidence!  I guess I really AM living in the same house you used to live in!”

Her:  That is sooooooo amazing!”

Him:  “Isn’t it!!!!!”

And while they were talking, I drove by at least another ten yellow houses on main street.  I wonder if they all have cupboards in the kitchen in which to keep canned foods???

I Wonder How My Name is Pronounced in Chinese

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I am thrilled to announce that my book,The Apple Tree: Raising 5 Kids With Disabilities and Remaining Sane, has been produced by e-Book Dynasty into Chinese!  I am hoping to inspire Chinese parents to accept their children born with disabilities with love and enthusiasm, enabling the family to live a productive and happy life.  If you know anyone who reads Chinese, please pass this information along.  Likewise, if you know anyone who reads English, please pass along information on the English Version.

Gee!  I wonder what my name sounds like in Chinese???????

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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“It Smells Like Flowers and Sunshine”

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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!

But She was Just Talking to Her!!

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My job includes coordinating both a summer and winter program for children who are blind and visually impaired.  Last winter our lovely little group of about 40 went to an indoor water park during February vacation. If you have never been to an indoor (or outdoor for that matter) water park, you are missing one of life’s most wonderful playgrounds with water slides for all ages and skills. My age may indicate I could manage the “black hole”, but my skill kept me in the kiddie area!  (Ohhhhh!  The KITTIE pool again!!!)   Lounging in the lazy river on a double tube was a great way for staff to keep an eye on their child without letting them float gleefully away amongst the throng of people enjoying the current. A huge water playground centered the park, with slides and little pools and tons of water play, including the huge bucket of water atop the structure.  Every so often, the bucket, filled with water, would tip over and the torrential water would come gushing down, soaking everyone as though…..well….as though a bucket of water was dropped on their heads. Because my daughter, Marie, was also on school vacation and she joined us, I chose this particular water park because it featured a surfing pool.  Marie LOVES to “surf”, and on every other occasion we have come to this facility she has spent the entire day doing so, waiting, nose pressed against the glass, at the door first thing in the morning to come in, and being the last one for the security guard to throw out at closing time.going to this water park.

My big surprise was that Marie wanted to help out a group of younger girls who are blind.  The girls had staff who amicably allowed Marie to join their group. Despite the fact that she normally communicates in American Sign Language, she somehow managed to be very sociable and get along well with everyone. Having such a strong love for “surfing”, my expectation was she would help for a little while, but spend most of her time surfing. Surprise of surprises!!!!  My wonderful daughter did not choose her own activity, but spent all of her time with the little girls, helping them on the slides, doing the “sighted guide technique” to maneuver around the crowded park, showing them where the food was on their plates, (using the clock method,) and so forth.  Marie was having a grand time, and the girls all seemed to adore her.

On the last night of this program. Marie was seated in the booth at the restaurant with two of the girls and their staff.  One of the girls all of a sudden started waving her hands wildly in the air, not just once, but she kept going! Prone to seizures, the medic ran over and asked her if she was okay.  Of COURSE she was okay, she said, she was just TALKING to Marie!!  The laughter started at their table and  soon circled around the room as everyone realized what she had said…she was signing to her, of course!!!!

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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/

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