Archive for the ‘disabilities’ Category

A Name a Ventriloquist Would Love…

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We had to put our  beloved dog, Brandy to sleep last summer, and our house has been empty, dog-wise at least, until Jody, a labrador/poodle mix came to live with us a month ago.  She is a sweet three month old, with a lot of energy and not much common sense.  Of course, she is still a baby and I guess babies themselves don’t have a lot of common sense, so I shouldn’t be so harsh.  After all, babies don’t come out of the womb knowing how to use the toilet, so why should I expect anything different from a puppy?  The problem is,  she is a fanatic about only peeing on a pile of newspaper.  We have to be very careful not to leave any paper lying around lest she pee on yesterday’s top story which I have not had a chance to read.  We have been desperately trying to get her to go outside, but she has developed this irrational fear of  going anywhere OTHER than on the newspaper.  She seems to be very stuck in her ways, because at the dog park she ran around and played with the other puppies for a few hours, and she did not leak so much as a drop of pee.  Have you ever heard of a dog that plays in an area where there are other dogs and it does NOT mark it’s territory, or at least leave a little fragrant sample for others?  Not Jody…she held it in until we come home, when she ran straight for the newspaper and peed a massive amount, like she has been holding it all in for hours, (which she clearly HAD.) Poor President Obama’s news would not get read that day.

I began to move the newspaper closer to the back door so she would get the idea that she should be doing  it outside.  She was getting there…closer and closer.  Finally, I eliminated the paper altogether and left the back door open for her to go outside whenever she wanted.  (Fortunately, it was not one of those days where we got a freak snow storm.)  She went outside to play.  She went outside to dig in the dirt.  She went outside to swat bugs from her face.  She went outside to chew on the branches of a nearby tree.  But she would not go outside to pee.  Sensing her distress, I did the only thing I could think of; I put a piece of newspaper outside. She ran straight as an arrow to use it.  Now, she goes to the door, barks, I let her out, and she pees on the newspaper.  If there is no paper, she looks at me with a forlorn expression, and just stands there…it appears that my newspaper subscription will have to be doubled!

Yesterday, I drove Jody up to visit with Marie, (who attends a  residential school for children who are deaf.) Marie loves animals, but they do not take to her too kindly because her semblance of speech is loud and guttural, (even scaring me if I was alone in a dark room and didn’t know she was there.) When she called the dog, she scared the poor puppy, which cowered. Marie looked at me with a great sadness. HOW could the puppy not LIKE her?  Then she called the dog again, but as I stood behind her, under my breath, I also called the dog, which came running to us.  Marie angrily turned and looked at me.  ”YOU called her,” she signed in ASL, “I saw your lips move”, obviously with the eyes she has in the back of her head.  She was devastated the dog would not come for her alone.  So, we tried it again.  This time, I put a large smile on my face and forced a cheery “Jody!!!” through my smile, not moving my lips.  The dog came running, Marie was happy that I had not called her, (?) and my lips didn’t move a bit!  (Try it….)  The fact that her friends and teachers to whom she introduced the dog were also deaf was also a lucky break on my part because they couldn’t squeal on me.

Okay, so it was a little bit dishonest on my part, but what parents don’t do things a little bit out of the ordinary to see their children happy?  Nothing feels better than the warm heart you get when you see your children smile, and Marie was smiling a lot that day.  Besides, the dog will soon learn to love Marie as we do, even though she can be a little loud and scary…

 

 

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I would love to come and speak for your group or at your conference.  I would do it for free, but would need the price of travel. For functions in the North East, that would be only gas money.

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/

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/

A Hug Award; My Kind of Award!

I am not one to generally accept awards.  I am pleased to receive nominations, but I do not generally post the award.  I strive to stay level headed and an every day person.  (Awards would tend to inflate my ego and I may start to sound “uppity”, which is not in my nature.)

However ,Michele Kearns who has the inspirational blog Joy Returns, nominated me for a very special award:

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The HUG Award© was initiated by Connie Wayne at A Hope for Today athttp://ahopefortoday.comwhich promotes hope, love, peace, equality, and unity for all people.

The HUG Award© is for people with an expectant desire for the world, for which they:  Hope for Love; Hope for Freedom; Hope for Peace; Hope for Equality; Hope for Unity; Hope for Joy and Happiness; Hope for Compassion and Mercy; Hope for Faith;Hope for Wholeness and Wellness; Hope for Prosperity; Hope for Ecological Preservation; Hope for Oneness

The HUG Award© recognizes and honors those who help keep hope alive in our current world, which is plagued by war, natural disasters, and economic recession.  They nurture hope, in any of the above areas (in italics),  by the work they do, or in their personal lives with things such as blogging, public speaking, charity work, etc.

The HUG Award© is for anyone, anywhere in the world, who meets the guidelines and wants to be nominated for the award. Please leave a comment on this page if you are interested in receiving this award, or if you would like to nominate someone else for the award.

The HUG Award© is for people who, without giving up or compromising their own religious, spiritual, or political beliefs, are able to nurture hope and respect the dignity of all people.

The HUG Award© is for those who, without bias or prejudice, use their resources and gifts to make the world a better place for everyone.

The HUG Award©is for people who have a hope or an expectant desire that the work or talents they use in things such as blogging, public speaking, charity work, etc., will make a positive impact on the world.

These people do not have to actively use the word “hope” in their work or creative talents.  They only need be conscious of their desire to make the world a better place for everyone.

These people use their available resources–a smile, a hug, a helping hand, a listening ear, a voice, time, money, possessions, education, personality, talent, websites and blogs—to make a positive impact on the world and make the world a better place to live.

The HUG Award© is not a website or blog award.  It can be given to people in your community, at your employment, at your place of worship, etc.  Please make sure they have a copy of these Guidelines, and please don’t forget to submit their names back to this site.

I am pleased to share this award with everyone who strives for peace and to make the world a better place.  Is it such an honor, and little ol’ me is humbled.

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.

A Christmas Gift from Above


We adopted Dinora from Guatemala at the age of 6 weeks, and I was so thrilled to have a daughter!!!  She came with a variety of diseases common in s 3
rd World Country, scabies, intestinal parasites and malnutrition.  But we loved her and fed her and she blossomed into an adorable baby with big black eyes and shiny black hair.

At the age of six months, it became apparent that Dinora was deaf.  She had not yet started to babble like other babies her age, but she also did not turn to her name, or looked at the dog when she barked, or seem to notice the footsteps of me coming into her bedroom.  She would be laying there awake when I walked in, (and, believe me, I am not light on my fight.)  When she finally would see me, she would startle.  She had not heard me.  The day I knew it for sure was a day she was sitting next to me on the floor while I was doing the dishes.  I accidentally dropped a huge lobster pot I was cleaning and it made a horrendous clang on the floor.  Dinora happily sat there playing, her back to the pan.  She did not startle.  She did not cry.  She did not hear it.

We then made the rounds of the doctors.  She flunked regular hearing tests, and had a brain stem evoked response test.  Her brain did not respond up to 90 decibels.  The doctor informed me that she was severely hearing impaired and that we would try hearing aids to maximize her hearing, although they would not be strong enough for her to hear normally.  They took the impressions for her ear molds.

That evening, our family went for a pre-Christmas visit to a shrine beautifully decorated with Christmas lights.  I was feeling sorry for myself.  I had a two year old son who was legally blind, and now I had an infant daughter who was deaf.

There was a statue of Our Lady of Lourdes surrounded by prayer water and many large candles.  There was also a large display of crutches and wheelchairs of people who had been healed by her.  I helped my son, Francis, who was 2 1/2 years old, light a candle. Because it was almost Christmas, and the only candles he had seen were on a birthday cake, he merrily sang “Happy Birthday Dear Jesus”.  I remember saying a non-de-script prayer, still upset that Dinora was deaf.  I still thanked God,  but was not quite as enthusiastic as usual.

The next morning, the dog barked and Dinora woke up!  I thought it was a coincidence until I started to walk into her room and she turned to smile at me. She had heard my footsteps!  I started talking to her and she started babbling back.  Only a day earlier she had been fitted with ear molds for hearing aids!  I excitedly called the doctor, who agreed to see her that day.  Her hearing was tested and it was normal!  Neither I nor the doctor could believe it.  He said in his 29 years as an ear doctor he had never seen anything like it.  He told me that it had to be an “Christmas miracle from Above”.  The visit the night before to the shrine came to mind.  A miracle HAD occurred, and I was  embarrassed because I had not thanked God more enthusiastically the night before. He had granted me a miracle even though I did not ask for one.

Dinora is now 28 years old and has had perfect hearing ever since that day! And I have lived life with a peaceful,generous heart because I know, without any doubt, that God is with me.

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It’s No Fun to Play Scrabble Alone

I lead a complicated life, but every evening I take time out for a nice bubble bath and frozen wine cooler.  I used to read the newspaper while in the tub, but lately my patience has been tested and I find it too big and cumbersome to read without it dipping into the water.  So, I have been playing Scrabble on my telephone. I have played Scrabble all of my life, most often with my mom who passed away a few years ago.  We were pretty evenly matched, and playing together gave us quite a bit of quality, stress free time together.  I welcomed the chance to play Scrabble in the tub, equating it to the fun, stress free times when I played with my mom.  Instead, I have found out that it is no fun to play Scrabble against the computer.  It is not that the computer always wins, as I can beat it 50% of the time. It is because it does not play fairly.  When playing with my mom, instead of choosing a small word for a lot of points, (think zip,quit, hex…) we would play a larger word (such as trainer) in order to open up the board more.  There is nothing I hate more than having a board where the words are concentrated in one area so that there are few options for play.  By playing the larger word, more options would be available.  Sure, it would be less points, but the game would be easier and more fun.  Also, my mom and I would purposefully set up an option for the other player to use a double or triple word score.  Again, not a lot of points individually, but more fun for our partner, and therefor more fun for us, who gained pleasure from the happiness of others.  I guess we played Scrabble like we lived our lives…considerately, unselfishly, with an eye towards more fun and enjoyment.  These traits have not been programmed into my Scrabble computer opponent.  It wants to win, and does not care if the words are too close together.  It also chooses to use the double and triple word scores itself, not sharing them with me!  It is not like playing with my mom, and playing it does not relieve my stress.  It is just no fun to play Scrabble alone…

 

 

 

 

 

If you are new to my blog…welcome…please check out my e-book The Apple Tree:  Raising 5 Kids with Disabilities and Remaining Sane.

I am Not Very Good with Water Crafts

I work with several recreational groups for children. I am great arranging games, doing social skills activities, helping them   cook simple meals, go out to the movies, bowling and other such activities.  The one area where I am terrible is in doing crafts.

For an October program, we had a great day; went to a corn maze, picked pumpkins, made pizzas for lunch and then…decorated pumpkins. What could go wrong with that, you ask?  Well, I was in charge of it, which was the first mistake. The second mistake was in lieu of having the children of various ages and disabilities use a knife to cut into it, I chose to have them decorate the outside. Not with just stickers…no, THAT would have been too easy! We were using large google eyes, yarn for hair and fake “gems’ for the smile. Very tactile.  Lots of bling.  Lots of glue.  Lots of the WRONG glue…the yarn hair drooped into the eyes, which drooped down towards the mouth, which also drooped down into a frown.  They were very sad looking, in more ways than one.  I excitedly told them to tell their parents they created a melting pumpkin face.  They were thrilled they were so clever.  I was mortified the glue did not hold the items in their designated places.

I had another glue mishap a while ago.  I used jars of baby food and the kiddos glued an icon into the jar top; Mickey Mouse, Spiderman, Disney princesses, and the Littlest Mermaid.  While it dried, they added water colored a light blue, and then half of a jar of sparkles. We were making snow globes, of course.  However, when they tightly screwed the top to the bottom, the icons  simply drifted off into the water.  I had used the wrong glue AGAIN, not water proof.  The little icons were freely floating in the sparkly water.  They could understand why they Littlest Mermaid was swimming, and Spidey could have been flowing through the water to save someone, but poor Minnie and Mickey were just plain drowning!  

My last craft humiliation also contained water.  A few weeks ago I had the kiddos make Thanksgiving centerpieces using real flowers in a beautiful bowl.  I’m no slouch when it comes to common sense, so I knew enough to purchase those green hard spongy things in which the kids could stick the flower stems. First,they glued colored (fake) leaves on the outside of the bowls. Then they started sticking the flowers in one by one.  We followed a basic pattern, a tall, bushy yellow one on top, assorted yellow and orange ones arranged downward, and plenty of greens to finish it off. They put it in the bowl and we filled it with water. They all looked WONDERFUL. I was so proud of my students and their creations,which they showed to their parents when they picked them up. We all know that moms and dads are famous for “ooooowwwwing” and “aaaawwwwing” over each and every creation their child makes, but I knew for sure these were the real thing.  

After the students left, I went back to look at the flower arrangement I had done as a sample.  The flowers were listing to the side.  Curious because they were stuck safely into that green hard spongy thing which should have held them straight…IF IT HAD BEEN GLUED PROPERLY TO THE BOTTOM OF THE BOWL!  GLUE!!!!! Why hadn’t I known that it would FLOAT if not glued down?  Horror visions of the kiddos flowers floating on their side, sitting on their Thanksgiving tables filled my head.  Oh, NO! I am staying away from glue and water crafts from now on!    

 

 

 

 

 

 

 

 

 

 

For any new readers, I am attaching the review of my book by Readers Digest:

Nov 02, 2012 11:04 AM EDT

What to Read After a Hurricane

by Dawn Raffel

Shortly before Hurricane Sandy came to my town, flooding my house and knocking out the power (which is still out), I had the good fortune to download The Apple Tree: Raising 5 Kids With Disabilities and Remaining Sane by Linda Petersen.

Her story begins not with her children but with her own childhood spent traveling the country in the backseat of her parents’ car (her perpetually restless dad had post-traumatic stress disorder from  WWII), often with very little money and few provisions. Where someone else might have seen deprivation and isolation, Petersen viewed her unusual childhood with a sense of wonder and gratitude. After marrying young and giving birth to a son who was legally blind (and who went on to earn a PhD on full scholarship), Petersen and her husband adopted four more special needs children and fostered many others.

Her honesty, wit, and terrific storytelling make this a book you want to read rather than one you feel you should read. So there I was, swiping pages on an iPad in the dark in a blackout… I couldn’t have picked a better book for putting it all in perspective.

http://www.rd.com/recommends/what-to-read-after-a-hurricane/

I Never Thought I’d be Thankful for Having Big Breasts…and I Don’t Mean the Ones on the Turkey!

I waitressed from the age of 15 to 27, and it was a great job to have during college and as I started my career as a social worker.  I learned how to balance eight plates on my arm, and carry another 3 more in my hand.  I could gather up 8 glasses of water and get them to the table without spilling a drop.  I enjoyed the customers and nothing on the job bothered me…if I can handle life with five kids with ridiculously difficult problems, I could handle a burnt meal or two, the Heimlich maneuver, and customers running out without paying their checks.  So, when the time came recently that we needed extra money, I obtained a job as a waitress at a well known local restaurant nearby. Of course, I haven’t done this job in 30 years, and I AM a little older, but I thought I could still do well (and use my Cheshire cat smile to charm the customers into leaving large tips.)  I have worked for a week at this job, and I DO like it, but age has a way of affecting how I do my job.  When I squat down to get something from a bottom shelf, I can’t get up without a helping hand.  I need glasses to read the orders.  At this restaurant, which is more “elegant” than where I worked before, we need to use trays on which to place the plates of food, not line them up our arms, (a technique which served me well so many years ago!)  The problem is, I have arthritis in my hands and elbows and my balance is a little off, so I have difficulty carrying a tray full of meals up on my shoulder using one hand.  I CAN carry the tray on my shoulder if I use 2 hands, but the problem then comes when I have to put it gracefully down.  The other waitresses deftly grab a tray stand with one hand while balancing the meals with the other.  That’s not gonna happen with me.

This is where my appreciation of large breasts comes in.  I had always hated them.  The bra straps hurt.  They poke out unattractively.  If I try to wear a necklace, it sits at an awkward angle.  I am forever collecting crumbs on them. And they have just generally been a pain in the neck to put up with.  Until now.  When waitressing, I have learned how to take the tray off of my shoulders with both hands, and, with one hand under the tray and the top part of the tray balanced solidly under my left breast, I use my other hand to serve the meals.  Mission accomplished!  I wonder how long I’ll be able to do this before the management notices the gravy stains on my apron!

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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