Posts tagged ‘disabilities’

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…

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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/

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Little Toe Socks inside Insulated Socks

emily

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

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

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

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

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

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

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

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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.

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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/

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Aside

I Thought That Only Happened in Cartoons…

When Angel recently graduated from high school, (Thank GOD for that huge accomplishment,) I lent him my mini-van for a car.  When Dinora graduated from high school, we paid 1/2 the price of a car for her so she could use it to go to work and college.  By the time we got to our 4th high school graduate, lending him my car was the best I could do! He has been thrilled with the mini-van, unfazed by the stares from classmates. He can drive and he has a car and that is all that matters!

Fortunately for me, who gave up my mini-van, I was able to obtain a huge 12 passenger wheelchair life van for free.  (long story.) It is so tall that I need a step stool to climb up into it.  And I am not very ladylike in doing so!  But once I get in and start driving, it seems like a regular car to me, as long as I just look forward.  I also just drive it forward, of course, because backing up this monstrosity of a van is a little beyond my capabilities.

This van is a 2002. Huge. Older model with some mechanical difficulties. Last week, it would not start.  It appeared that all of the oil had drained out of the engine. I couldn’t budge it.  A frequent user of AAA, I called for a tow to our family mechanic.  I told them my van needed a tow.  They asked me what kind of van.  ”White”, I answered.  ”Dodge”.  They asked me what model Dodge, and I told them a van.  (How was I to know that there are many styles of vans? I’m just a little old mother…) “1500?” they asked.  ”Sure!” I answered.   I waited the requisite half hour, and along came a cute little tow truck with a lovely driver.  He took one look at the van, which towered over his tow truck, and started to laugh.  ”They didn’t tell me it was a 3500 model” he said.  I took the blame for that, pleading ignorance about vans.  He did not look too hopeful that his little tow truck would be able to tow it, but because he did not want me to have to wait any longer, he offered to try.  He was very nice.  He backed up the tow truck and hooked up the van.  As he started to try to lift it, the van did not budge!  Instead, the tow truck moved, and the front of the truck was soon lifted high in the air! It was hilarious!  As the driver slowly lowered his truck, he apologized that he “did not think” he would be able to tow it.  And we both burst into laughter.

I had to wait several more hours for a flatbed tow truck to come to bring the van to the mechanics.  I didn’t  mind the wait.  I giggled the whole time!

Written

on October 19, 2012

I KNOW there is a heaven.

I generally try to write upbeat posts…that with whatever difficulties we have, there is always something good to find.  This post will be different than the rest…it will be about my younger brother’s death.  It won’t be upbeat, but there is something good that has come out of it.  I KNOW there is a heaven. Without a doubt.  Proof positive.

My brother, for those who are unfamiliar with my “life story”, was born during the Rubella days.  My mother somehow contracted German measles while she was pregnant with him and he was born legally blind, severely hearing impaired, (almost deaf by the time he died,) severely developmentally delayed, with a cleft palate.  His life with us is what taught me such tolerance for individuals with disabilities.  My brother was disabled, but he was a joy to be around.  He had simple pleasures that made him smile, and to me, he life was as worthwhile as anyone else’s.

He was wholly incorporated into our family life and he did everything with us.  When we traveled extensively, his favorite activity was paying the toll at the toll booth.  My father would drive up to the booth so Curtis’ hand could reach the booth, and give him the money to put in.  He took great joy in reaching out to feel the basket and put the money in.  I swear my father always took the turnpikes with tolls solely so Curtis could have fun paying.

Around the time I grew up and got married, Curtis developed schizophrenia.  The simple pleasures he had in life were replaced by demons and aliens telling him to do things.  Curtis, ever the obedient soul, started to wander the streets in the middle of the night doing what these voices instructed, and there came a time when my parents had to place him in a group home.  We were fortunate in the fact that it was a wonderful group home, full of caring staff, and they took excellent care of him.  Every Saturday my mother, my kids and I would pick Curtis up and take him out for the day, usually to the mall to walk around.  He loved malls, especially riding up and down the escalators and elevators.  To be so joyful doing something so ordinary was one of his gifts.

My mother, who was very spiritual and had several supernatural experiences,  passed away two years ago, in November.  (Note a reblog I’ve attached following this one entitled Angels Among Us.)  Although we missed her terribly, my children and I continued our outings with Curtis.  All of my children loved him and would often argue who would sit next to him, or who would be his sighted guide. Their immediate, natural attachment to him amazed me given his severe disabilities and his disfigured head.  (His head was flattened on the back and he had huge ears that stuck straight out to the side.  My daughter who is deaf gave him the “sign” name, one that usually highlights a person’s individual characteristics, of Uncle Ears.)

We continued to take him out and he appeared to have his same zest for life until October of last year.  All of a sudden, his skills began to decline. Numerous medical tests were done and he was determined to be perfectly healthy.  At the mall, although he always had shuffled along when he walked, his shuffling turned to dragging his feet, then losing his balance, then having to use a wheelchair to get around.  Again medical tests.  No medical reason for his decline.

I remember guiltily the last time I took him to his favorite mall.  He was in his wheelchair, but I left the footrests in the car, assuming he could pick his feet up or shuffle them along.  I knew I was in trouble when I purchased his favorite ice cream with strawberry sauce. Because  he had lost the ability to feed himself,  I spoon fed it to him. He started to spit it out.  He didn’t want it!  His favorite thing to eat!  I new I needed to get him to a hospital, but had to bring him back to the group home first because they had his medical records. When I tried to push the wheelchair, his feet stuck to the ground. He did not lift them or shuffle along.  They just hung there.  If I pushed it forward, his feet would get stuck under the wheelchair.  With tears stinging my eyes, I did the only thing I could do to get him out of the mall.  I turned around and pulled the wheelchair backwards.  I could hear the thump thump thump of his feet on the ground and I started to cry in ernest. I had to pick him up to put him in my car, and he slumped over to the side with only the seatbelt keeping him from falling over.  It was obvious he had declined to the point that neither I nor the group home could take care of him. We took him to the hospital where he was admitted and again found to have no medical problems so he was placed in a nursing home. It was difficult to find a nursing home that would take him due to his numerous scary diagnosis; deaf, blind, schizophrenic.  He ended up in a less than perfect quality facility.  Due to frequent attacks of anxiety, when I first visited him I found him in restraints and his hospital bed mattress on the floor.  They were concerned that he would fall out of bed, so the had removed the actual bed and just left the mattress. He was alone, and a tray of food uneaten, (unseen by him) was in the corner of the room. They would come in and poke and prod him, give him medicine and needles, never treated him like a valuable human being.  He could not hear what they would say, the needle would pinch him, a blood pressure cuff would take readings, the thermometer would be used to take his temperature, and all of this would come at him out of the darkness and he did not know what was going on.  No wonder he was anxious!

Recognizing that with the swiftness of his decline he did not have much longer to live, I made the decision to stay with him at all times. I had to preserve his dignity.  We had done all we could so he could live a happy, dignified life, I could not abandon him at the end of that life.  With my being there, he no longer needed the restraints. My husband valiantly cared for all of the kiddos at home while I took care of my brother.   I spent my days sitting in his private room trying to coax some food into him.  When he wouldn’t eat the food they gave him, I would bring ice cream, pudding, applesauce and other things I knew he would like. I would lay on the floor next to him and rub his back or his arm, like we used to do.  If he could not see or hear me, I am sure that he could tell by my touch that I was there.

Within a week, we knew that he was fading away quickly.  My brother, who despite his disabilities had been as healthy as a horse his whole life, was dying and there was no medical reason for it.  Then I learned the reason; on his last night, while I was rubbing his arm, he turned to me, opened his eyes so wide it seemed as though he could see me, and he said plain as day, without the almost unintelligible garbled speech he used to have, “Mom is calling for me.  I will be going to heaven soon.” Then he shut his eyes and never opened them again. He died exactly one year to the date as my mother.

Yes, there is a heaven.  I know because my brother told me.

For those who might want to read more about my incredible family, the e-book The Apple Tree:  Raising 5 Kids with Disabilities and Remaining Sane is available on Barnes and Noble, Amazon and I-Books.

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The Joy of a Successful Life

    My oldest son, Francis, recently got married.  Despite being legally blind, he had graduated with a doctorate from Cambridge University in England, and has been working for a computer conglomerate in California for the past five years.  While living alone, he walked to work, prepared all of his own meals, (purchasing groceries from a nearby store and pushing them home in an umbrella stroller, which he found much easier to use than the folding metal grocery carts,) did his own laundry, paid his own bills, and functioned completely independently using adaptions for his vision.  He had conquered Cambridge University alone, which demonstrated he could definitely succeed.  He had also succeeded in becoming a licensed captain for sailing and skiing Black Diamond trails in the Swiss Alps.  Definitely an intelligent and capable young man with only the minor inconvenience  of not being able to see well. 

     While successful in his independence, like everyone, he searched for that “special someone.”  Working twelve hour days, six days a week, he did not have much free time to socialize in the community, and he did not see himself going to a bar to “pick someone up”.  He did what he had done his whole life…utilized the computer to accomplish his goal. He had a method for his computer match-ups…first meet them for coffee, than lunch, then dinner and then decide if it was a relationship he wanted to pursue.  After a few false starts, he finally found his significant other.  They loved spending time together and had many things in common.  The one good thing they did NOT have in common was that she had a car and she could drive!  Although Francis was very adept at using public transportation, it was nice not to have to spend quite so much time traveling.

     And so they got married last month.  The got married outside under a gazebo.  They wrote their own vows which were, as is my son, clever, humorous, heartwarming, touching and sensitive.  They smiled and cried through the whole ceremony, which ended with them nailing shut a special wooden box with a bottle of wine which they had purchased on their first vineyard tour together.  In the box, there was a slot, and they each submitted a copy of their wedding vows.  On each anniversary, they would write each other a love letter and slip it into the box, which would be opened at their 25th wedding anniversary.

     The theme of the wedding was computers. To make a long story short, she had asked him to help her with the theme for the wedding.  Not being very knowledgable in this area, he jokingly said “Computers”, and she ran with it as a theme.  The wedding invitations were computers, the wedding cake was a stack of computers, the decorations were computers and so forth.  They had even gone so far as to have computers made to wear on their head, although her “computer” had little bows on it.  Their engagement photos included a picture of them wearing their computer gear, holding hands.

     The reception was wonderful, with Francis and his new wife smiling ear to ear, giggling or laughing the whole time.  Their love for each other filled the room with joy.  I was asked to give a speech, and this is a summary; “I don’t care how old our children are, they are always our children.  I always worried about Francis, and especially about his dangerous activities such as skiing down the Black Diamond slopes.  He knew I was petrified he would ski into a tree and get hurt, or worse.  When he went skiing in Switzerland, he sent me a picture of him standing proud at the top of the slope, dark goggles reflecting the sun, a big smile on his face.  ”See, mom, no trees on the Alps” he wrote.  I was so proud of my son who, at the age of 24, still knew his mother worried about him and wanted to reassure her that he was okay.  I was relieved he would not be facing any dangers on those slopes…and it wasn’t until years later that I learned there may be no trees on the Alps, but avalanches are common!  At any rate, this wedding day is the happiest of my life because it is the happiest day of my son’s life.  He has found the perfect mate, someone who shares the same interests, someone who loves his cooking, and someone who drives!  She has to be the most perfect person in the world for him…how many other engaged women do you know who would wear a computer on their head for their engagement photo? And so I congratulate the both of them on this momentous occasion.  As his mother, I know I don’t have to worry about him any further.”

     As parents there are many times we wonder how our children, especially our children with disabilities, will “end up”.  I can breath a sigh of relief.  Francis has “ended up” just fine…

Don’t forget…my new book “The Apple Tree: Raising 5 Kids with Disabilities and Remaining Sane” is available on Amazon.com, Barnes and Noble and I-Books!

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Written

on September 23, 2012

Raising 5 Kids With Disabilities: THE BOOK!!!!!

The six-week-old infant boy, with gorgeous blue sparkling eyes and blonde hair does not make eye contact with his mother who is trying to nurse him because he cannot see. The five-month-old infant girl from Guatemala with happy brown eyes smiles easily, but cannot hear the voice of her mother. The six-year-old boy with dark skin and gorgeous black curls hides behind a large, fake plant rather than join his family at the table for Christmas dinner. The Hispanic boy’s joyful smile at his mother turns to a smoldering stare, holding the darkness within him. The seven-year-old girl with beautiful blue eyes and blonde hair, does not love her mother, and tells her so every chance she gets. She tells her in American Sign Language.
Are these snapshots of five troubled families?
No, these are the children of my family. My name is Linda Petersen. My husband RAYMOND and I have five children with five different disabilities. Our first son Francis was born blind and we later found that I carried the same gene that had left my brother blind, deaf and multiply disabled. So we adopted our second child, Dinora. Declared healthy, she turned out to be malnourished and deaf and suffering from attention deficit, post traumatic stress and anxiety disorders.
Still we coped. I worked part time and drove my pair to numerous medical and school appointments, while Raymond pitched in admirably on housework and cooking.
But when Francis and Dinora became teenagers and my schedule eased, I ached to do more. Raising children was great fun and I had the time, emotions and ability to give. Raymond adored children, so our only dilemma was how to add to our family.
Since we lacked the money to adopt again, we became foster parents and requested only infants. Caring for and watching babies grow and develop has been an awesome and humbling experience. Although most were returned to their parents or adopted by relatives, we wound up adopting three of these children ourselves.
Each, it turned out, had serious disabilities as well. As they grew, horror stories emerged from their family backgrounds: beatings, sexual abuse, severe neglect, cocaine addiction, and neurological damage.
Our family is a walking dictionary of medical conditions and psychological syndromes, some so severe that you would never expect that child to live a normal life. Yet our children have survived and thrived.
I hope to share with others the approach that has worked for us. Acceptance and humor ease life’s burdens. Patience and understanding trump even the greatest disability.

After ranting and raving about my lovely life raising 5 kiddos with disabilities, the book has finally been published as an e-book;  ”The Apple Tree:  Raising 5 Kids with Disabilities and Remaining Sane”, on Amazon.com, I-Book, and Barnes and Noble.

The Apple Tree; Raising 5 Kids with Disabilities and Remaining Sane

Publication Date: May 12, 2012

Please consider purchasing one. It’s only $8.99!!!

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childhood, disability, God, good luck, multiple personality disorder

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If the Washing Machine Eats the Socks, What Eats the Silverware?

 

 

 

We all know the adage that the washing machine eats socks, which is why they never come out in pairs.  I long ago gave up trying to match them, just buying plain black socks for the boys and hoping they kind of match.  Marie gets to feel in fashion because all of her socks are multi-colored with frogs, kisses, stripes and cats.  If she can get one stripe from one sock to match the color on the cat, then she has found a match!

My concern is our silverware.  When we first had kids, we started out with a full Faber ware set.  As we saw pieces disappear one by one, we had to replace the set several times.  (We now have 72 knives and six spoons left.)  We do not know where the silverware goes.  As far as we are concerned, we eat with it, put it  in the sink, in the dishwasher to be washed and then back in the silverware drawer.  It is not rocket science.  It IS, however, way too complicated of a system to work in our house.  For some reason, our silverware disappears!  One would assume that the washing machine/sock theory would work for the dishwasher and disappearing silverware, but, alas, that is not the answer.

Theory #1 is that ours is the “HOUSE OF THE DISAPPEARING SILVERWARE”, oooooooooh!  We sometimes stay awake at night imagining the silverware whisking away into thin air with a whoooosh here and a whooosh there, kind of like witchcraft.  In the morning, half of the spoons are gone!

Of course, another explanation is that, somehow, the children are involved.  Maybe they take a paper plate of left over supper to their bedrooms and the silverware gets thrown away with the disposable dish. I shudder to think of this dirty, tragic end to our fine and selfless silverware. They die in the line of duty.

Whatever the reason, and whatever the consequences we have put upon our children for not taking care of the silverware, it continues to vanish for no reason.  (Thus the plausibility of theory #1.)  We have given up our concept that the ideal home has good silverware and we have replaced it with spoons and forks from WalMart.  Ours is still an ideal home in my eyes, we just use cheap silverware.  You wouldn’t imagine the amount of stress it relieves!

 

PS.  I have this fantasy that one day when I die, all of the lost forks and spoons will find their way into my casket, making up for their lifetime of disappearances.  Unfortunately, they will also drag with them the bits and pieces of food, which have now petrified onto them.  Of course, no one else in my family will ever know, because by then my casket will have been closed and sealed…

 

 

 

 

 

 

***********

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/

 

Category:

ADHD, adopted children, Aspergers, autism, autistic, child, children with disabilities, cleaning, coincidence, Disabled children, families, family, foster care and adoption, humorous, joy of parenting, mom, news, parenting and remaining sane, stress

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