Archive for the ‘PTSD’ Category

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…

Easter reminds me of the Easter Bunny and the Easter Bunny reminds me of Santa…

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Easter.  Ham.  Easter Eggs.  Jelly Beans.  Marshmallow peeps.  Chocolate Easter Bunnies, (see picture.) AND the EASTER BUNNY!!

(Spoiler Alert:  Do not let anyone under the age of 7? 9? 12? read any further.)

 

I am sure that most of us of a Christian faith believed in the light, magical myths of the Easter Bunny, the Tooth Fairy, and Santa Claus.  Bah Humbug!

My realization that there was no Santa Claus happened on the day before Easter when I was seven years old.  Friends and I were playing hide and seek in our house, and my hiding space of choice was my mother’s closet.  I opened the door and plopped in…right on top of a cellophane wrapped Easter basket!  I could feel the jelly beans fall out, trickling down my legs, and the weight of my body squishing the basket with a sickening sound.  As the marshmallow peeps were flattened, my childhood fantasies vanished before my eyes!  It was only reasonable to assume if my mom pretended to be the Easter Bunny, then the Tooth Fairy and Santa Claus were also non-existent.

This was actually a good realization for me.  For many years I had questioned Santa’s fairness.  If he was omnipresent, then how did he not know what I wanted to Christmas?  Even when I sat on his lap and told him…repeatedly…and wrote letters…repeatedly…he still did not bring me that all important, desperately desired, Barbie Doll for which I had asked. The Santa who came to my house had always disappointed me.  Having parents who were obsessively frugal, Santa would bring me unexciting gifts…a new toothbrush, a t-shirt, hair ribbons, and small bottles of shampoo (which I later learned came from the times my father traveled for work and stayed in hotels.) One year I even got 3 pairs of underwear that were much too big, but, judging from the price tag which Santa had neglected to remove, they were on sale for an unbelievably low price!   As a child, I could never understand why my friends and classmates received wonderful gifts of not only Barbie Dolls, but Barbie houses, Barbie cars and tons of Barbie accessories.  They would receive many, and I longed to own just one… but it was not meant to be.  When playing with my friends, they were always kind enough to share “Midge”, Barbie’s “best friend”.  While I appreciated this, I still felt resentful of their good fortune.

It wasn’t until I realized that Santa Claus did not exist that I understood that my parents had purchased all of those “gifts”.  As my childhood revolved around my dad’s “crazy” obsessions, I suddenly understood the significance of the gifts.  It wasn’t that Santa didn’t love me, or that I was somehow less worthy than my friends, or even because my good behavior wasn’t appreciated, it was because our family life was very different than most other families. And I took some solace in the fact that my dad, on his work trips, was thinking of me when he brought home the shampoos.

The whole concept of “Santa” has been a difficult one with my children. My oldest son, Francis, who is blind, hated the thought of having a stranger he could not see come into his house on Christmas Eve.  It was the one night of the year that I let him lock his bedroom door.

One year, I made the huge mistake of hiding the gift of a Little Mermaid comforter set underneath Dinora’s bed.  When she discovered it, she became hysterical, screaming that Santa had been in her room and he could have hurt her!  (She was going through a particularly rough phase with PTSD where she was seeing apparitions of “Bloody Mary”, so her sensitivities to having Santa in her room were heightened.)   She was only five at the time, and the only way I could calm her down was to admit that Santa did not exist, which caused her to cry even harder at the loss of this icon.

Steven, with his autistic tendencies, never did admit that Santa existed.  He was used to his strict schedule, and gifts from a stranger were not a welcome change.  He would wake  up every Christmas morning, walk by the Christmas tree under which the gifts sat, go down to the kitchen to grab breakfast, and sit in the family room to watch The Animal Planet on television.  It was his familiar routine…he never did acknowledge or look at his gifts. (In fact, to this day I have the SAME bag of gifts.  I bring them out every Christmas Eve, and pack them up every Christmas Day, only to be brought out again the following Christmas.  It is very selfish to say, but I have saved a LOT of money by not buying him gifts!)

Angel, my son with Dissociative Identity Disorder, (multiple personality disorder) had a great time each year developing his very eclectic request for gifts to satisfy his many “parts”, male, female, baby, toddler and his appropriate age.  I am sure that not many other boys asked for a complete manicure set along with baby rattles, Superman and Spiderman toys, and a complete bow and arrow set, (don’t ask…)  The problem that developed was that Angel had finally begun to trust me, a conviction he had previously  not held in his four other foster placements. Everyone else had lied to him and let him down.  But here he was in our family with a family he could finally trust, a family that would not lie to him, a family in which he felt safe.  When he found out that Santa Claus was a lie, he felt devastated, furious, betrayed, conned, tricked and misled.  This lie has left an indelible mark on his life, one which he continues to discuss with a counselor.  Every single time I have gone into a therapy session with him, the fact that I am a liar comes up, and that lie is always about Santa Claus. While it is easy for us to say “just get over it”, for him, it has been impossible.   If only I knew then what I know now, I would have done things very differently.

Marie, I am embarrassed to admit, was a young teenager who STILL believed in Santa Claus.  Learning from my experience with Angel, I have never perpetuated this myth on her, but she came to live with us with this belief.   Because Marie is deaf and developmentally delayed, she had few opportunities to “heard” or learn that Santa is not real. This became very apparent to me last Christmas.  On Christmas Eve I put out the individual bags of gifts from “Santa”, which included one expensive item for each child, (a DVD player, Gameboy, camera and so forth.)   On Christmas morning, Marie woke up before all of us and deftly went through the bags, taking out all of the expensive items and putting them in her bag, leaving the other children with only minor items.  She excitedly showed me the wonderful bag of gifts Santa had brought; HER gifts, along with the valuable gifts from everyone else’s bag.  I was mortified to think she would be so selfish, and I told her so!  I told her that there was no Santa Claus and that I had bought the items and they were not all for her.  She tried in vain to argue with me that Santa left them all to her because she had been good, but both of us knew better…

So, this has been a long winded way of saying I DISLIKE SANTA!!!  While he may be a wonderful myth to many, for me and my children, he has been nothing but trouble. BAH HUMBUG!!!!!

The Easter Bunny?  Hey, SHE’S okay…

 

 

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Link to my book


https://itunes.apple.com/us/book/the-apple-tree/id538572206?mt=11

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

Link to the Readers Digest review of my book:  
http://www.rd.com/recommends/what-to-read-after-a-hurricane/

 

“All she does is screech and say No! No! No!”

 

The above description fit me perfectly.

Yes, me… perfectly.

Marie came to live with us at the age of 6.  She had been picked up off the street at 4 in the morning, barefoot, in her underwear, looking for food.  We took her in as an emergency foster placement because I knew American Sign Language and Marie was deaf. She looked like a wild animal…disheveled, matted hair, flaming eyes of distrust, so filthy everywhere that even an hour in the tub did not wash off all the grime.  Her teeth were dingy yellow, and her body was emaciated.  Being the “good” middle class mother that I was, I cleaned her as best I could and then I took her to buy some clothes.

In the store, she immediately disappeared.  I impulsively called her name, (as though she could hear me.)  When I finally found her, she was in the candy aisle, shoving candy bars into the pocket of her pants.  I screamed,  “No! No! No!”  She looked at me and ran in the other direction.  I finally tracked her down in the pet aisle, just as she was about to open the cage to the hamsters.  I screeched and said “No! No! No!”, and proceeded to grab her, pick her up, empty the candy bars in her pocket, and tote her back to the car without buying anything. If I thought this would teach her a lesson, it did not.  She was not used to buying anything, so she could not appreciate something she never had.

We ate out for lunch at McDonald’s.  Marie ate her sandwich and drank her milk and threw the wrapper and container on the floor.  No! No! No!

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The next day I gave her a stern talking to (“signing to?)  and told her that we were going shopping for clothes and that she needed to stay with me. As though THAT was going to work!  As soon as we got into the mall, a place she obviously had never seen before, she skirted UP the DOWN escalator, laughing with glee.  Mortified, I screamed and said No! No! No!  and then watched in horror as she slid down the banister of the escalator.  Big scream! No! No! No!  Home we went. 

Once at home, she got an orange to eat.  She grabbed the butcher knife to cut it and I screamed and caught her hand just as it was about to demolish the orange. No! No! No!

The next day we were going to take a walk to the library.  She broke free from the grip I had on her hand, and ran across 4 lanes of traffic. Scream! No! No! No!

Later in the evening, while watching television, Marie climbed onto my husband’s lap, where she attempted to rub his “private parts” and kiss him.  SUPER BIG SCREECH!  No!  No! No! Oh!  This child was so “bad”!  WHAT was I going to do with her?

At the end of the week, I went to Marie’s school where she was part of a dance performance.  I was glad to be able to be there, as her birth mother had never been seen at the school before.  I watched with pride as she danced and twirled, often sneaking a peak at me to see if I was looking.  When the dance was over, I saw her talking (signing) with another student who commented that Marie had a new mom, and how did she like her? Marie looked over at me for a minute and crumpled her nose, telling her that all I ever do is scream and say No! No! No! I was shocked.  I had never thought of it before, but she was right!  I was so busy chasing and correcting her that it would seem like all I did was scold her.  And what was I scolding her for?  For what I, as a middle class mother, think is wrong.  I had never taken into account that Marie had been raised to do all of those things…to steal food, to take what she wanted from stores, to litter, to be sexually promiscuous (at the age of SIX!) and to have no worries about safety, thinking she was invincible.  This young child, who had lived on the streets and managed to survive without any parental care, just parental abuse…WAS invincible! She did what she needed to survive.

I was so embarrassed. Embarrassed because I was judging her by my standards and not stopping to think of what her standards were.  I vowed never to scream No! No! No! again, but to explain things in a loving manner to her.

We do not steal.  If you want something, I can probably buy it for you.

We do not run into streets with cars, use butcher knives, or slide down escalators.  It is not safe.

We do not just throw garbage on the ground, but in our family we pick it up and put it in a garbage can.

And, most of all, there is no need to make money by being “friendly to men”.   We have plenty of money so you don’t have to do that.  And it is not fair that you had to do that instead of just being a little girl. And you never have to do that again.

Marie did not change overnight, but each time she would fall back onto old habits such as stealing or being unsafe, I would lovingly explain why she no longer had to do that.  She had a family that loved her and it was our job to keep her safe.

Then there was the time when, walking in the mall with a soft drink in her hand, she unwrapped the straw and threw the paper on the ground. My eyes widened, and she laughed when she saw my reaction.  “I was just teasing you” she signed.  “I know I don’t litter in this family….” 

No more screaming from me…

 

 

Link to my book  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/

 

 

 

 

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 at
http://ahopefortoday.com
which 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 Whole New Meaning to “Swimming with the Fishes”

I have been fortunate in that my mother loved to travel and she often took me and one of my kiddos “along for the ride.”  One of my favorite spots was Discovery Cove, part of Sea World in Orlando.  Discovery Cove offered a make believe coral reef with lots of beautiful fish swimming around and huge stingrays that would swim close and touch you. It was so amazing, and was as close to real snorkeling that I had ever been. With a life jacket, snorkel and mask on, Marie, (my 13 year old daughter who is profoundly deaf and has PTSD) and I spent the day swimming around, amazed at the many varieties of tropical fish. It was like being in another world.  In one spot, there was a glass wall and you could swim next to sharks.  Up until this point in my life, this was as close to real snorkeling, and SHARKS, that I would get! It was awesome!

Near the end of the day, Marie’s medication began to wear off as we had stayed later than I anticipated.  She began to get anxious, but she didn’t want to leave.   I told her one more swim around the coral reef and then we’d head back to the hotel.  As had been happening all day, a stingray came up and touched Marie on her leg.  In fact, she had been petting them for most of the day, calling them her “friends”.  For some reason, this touch was different than the rest.  She became frightened and had a full blown panic attack.  She started SCREAMING her high pitched scream and she was signing (in American sign language,) “The fish is going to eat me!” (Why the fish would think she were any tastier later in the day than earlier, I don’t understand.) To get away from the stingray, she climbed onto my back.  I tried to calm her down, but it was difficult to do sign language while trying to swim with a child on your back, and she was screaming so loud her eyes were shut and she couldn’t see what I was saying anyway!  By this time, we were halfway around the coral reef and as far from the shore as you could possibly get.  Marie decided she was not safe enough on my back because her toes were still in the water,  so she climbed up on my shoulders to get completely out of the water!  Unfortunately, that meant I’d have to sink UNDER the water for her to stay OUT of it.  I started screaming along with her.  (Albeit alternating choking with water and screaming.) She was truly frightened the fish was going to eat her and I was truly frightened I was going to drowned.

They have several life guards there and our dilemma was not hard to miss, with Marie standing upright and me bobbing in and out of the water choking. Because we were so far out, it took the lifeguards what seemed like an eternity to reach us.  When they got to us, Marie refused to let the lifeguards touch her, screaming and kicking at them.  (Good old Post Traumatic Stress Disorder shows up when you least expect it!)  What three of the lifeguards ended up doing was supporting me in the water while she continued to stand on my shoulders and scream. Of course there was a huge crowd of onlookers on the beach, some taking photos.  (We really were quite a sight!) Once on the beach both Marie and I collapsed into the sand.  The life guards asked if we needed to go to the hospital, but I was still breathing and Marie had stopped screaming and was crying quietly, so that meant we had both survived unscathed.  Well, maybe not totally unscathed, I’ve lost my wanderlust  for snorkeling!

 

If you are interested in reading more, I have written an e-book entitled The Apple Tree:  Raising 5 Kids with Disabilities and Remaining Sane  available at I-Books, Amazon, and Barnes and Noble.

Another Prom Mis-Disaster

I wrote a while ago about the damage I did to my daughter, Dinora’s, prom dress eight or nine years ago.  I miscalculated my ability to hem such a delicate item (ON the day of the prom when she told me it was too long to go with her shoes…after weeks of my asking….) The hem was crooked and the dress was gathered in places it should be gathered! I was saved from the humiliation of being a terrible mother by a local taylor who miraculously fixed my mistake, leaving her prom dress in pristine condition.

Well, my youngest daughter, Marie, who is deaf,  is going to a prom next month.  This is the daughter who has always preferred to wear male clothing, even men’s bathing suits!  Her theory is, if she dresses like a boy, no one will think she is a girl, so no men will “bother” her…  She, of course, does not realize that at sixteen years old, she has developed in such a way that men’s clothing can no longer disguise the fact that she is a girl.

Marie had a talk with her counselor, and she actually decided she wants to wear a prom dress, which would be the first DRESS she ever wore.  She was mortified at the thought of a short dress, but warmed to the idea of a full length gown.  So, last weekend I took her shopping for a prom dress, every mother’s dream activity to do with her growing daughter. Again, my dream activity quickly turned to a nightmare, but then I was again saved from disaster.

The day started out fine as we went to the mall.  Marie led the way to a major store she knows I have a credit card to.  (Thus my laments that I “have no money” would be moot to her.)  The gowns were dazzling bright with sequins and frills, but not enough fabric to cover Marie’s “growing” body.  She ran from rack to rack, picking out modest gowns to try on.  Looking at the size 11s, I knew she was not going to fit into them.  In the dressing room, she kept asking me to help her zip them up.  I tried to explain to her they were too small, but she accused me of not helping her enough!  We had an argument in the dressing room and she flew out in anger.  We walked the length of the mall with her seething inwardly, when she spotted JC Penney, another store to which I have a credit card.  We found the prom gown section, and BLESS this store…they had gowns all the way up to size 19/20.  Marie, in her glory amongst the choices, found what she thought to be the perfect gown and they had it in her size.  It was white with rhinestones and layers of ruffles and her eyes glowed happily as she tried it on.  She looked like a bride and my eyes filled up with tears. I thought of the despair we felt as she left the previous store without a dress, and the joy we both felt as she found a dress to fit her.  I say thank you to those stores who have clothes of all sizes for teenagers, especially JC Penney’s, which enabled one sixteen year old girl who is deaf to move one step closer to her date at the prom.

Volunteering is a Gift You Give Yourself

Volunteering is a gift we can give ourselves that can also improve the lives of others. It is a win-win situation with huge implications for both parties. When I volunteer or do something nice for someone I feel happy, almost to the point of giddiness. Before the invention of the Fast Pass for tolls, we would often pay the toll for the car behind us. My children and I would giggle about this gesture, a cheap happiness booster for only $1.00!

I have to admit that all of my volunteer efforts are completely selfish, starting with the adoption of 4 special needs children. People who say I’m “a saint” or “so very special” for doing this are completely wrong. I do it because it benefits me. I get 4 wonderful, if not troubled, children to love and who love me. Despite their many problems, I know that if they were anywhere else, their problems would be much worse. Seeing any improvement in them is a joy, and knowing that I had something to do with that is extremely satisfying. Additionally, I HATE to clean house, so if I have the work of caring for 4 children, then I certainly don’t have time to clean. See? Win-win for me!

I have volunteered with a recreational group of adults with disabilities for 30 years. It is a wonderful group! I do not have to worry about wearing make-up or dressing fashionably because they accept me as I am, as I care for them. I have 50 great friends! We have a bowling league every Monday, and an activity to follow, such as Bingo, a guest speaker, chair dancing, Yoga just to mention a few. We take 2 inexpensive trips together annually. We have been to Disney World, Penn Dutch, New York and Radio City Music Hall, Niagra Falls, Montreal, New Hampshire and more trips too numerous to mention. This is great for the organization’s members because they can have the support they need to travel. I make the arrangements for a motor coach with a wheelchair lift so that our friends in wheelchairs are able to join us. We stay at accessible hotels. The group is great and helps each other, thus proving my theory that almost everyone can volunteer. We have people who are blind who push people in wheelchairs. (The person in the wheelchair acts as the sighted guide!) We have people who are deaf who are sighted guides for the blind. We have people who are developmentally delayed carrying bowling balls for individuals in wheelchairs. It is a wonderful, supportive group. We send each other birthday cards. We have a great social outlet that is entirely dependent upon volunteers. We are so “tight” that when I was pregnant with my oldest son, they threw a shower for me, and they gave me all items I could use so I could bring my son on trips with them…portable crib, stroller, travel size baby lotion and baby powder. At the age of 4 months, my son first started attending this group, and he traveled and volunteered with us until he was a teenager. When my other 4 children were adopted, they similarly came with me and this group, and volunteered to the best of their ability. They loved to help the developmentally delayed play Bingo, and they delighted when their “friend” won! They have learned to be happy in the success of others. They have all provide sighted guide assistance for the blind, pushed wheelchairs, carried bowling balls and assisted in any way needed.

My children have been raised to be conscious of the needs of others. My older son, Francis, is legally blind. That did not stop him from volunteering. In high school he became and Eagle Scout by organizing a collection of 5,000 pairs of eyeglasses which were donated to the local Lions Club. He volunteered at a local child care center and loved playing with the little children. He was an assistant Sunday School teacher and a volunteer annually at a camp for the blind and Bible School. In college he volunteered out of state several times for Habitat for Humanity. He might not have been able to see to pound in a nail, but he was strong and completely capable of carrying heavy materials and helping to hold walls up. He also helped to coordinate several food drives and walk-a-thons at his college. Currently, after obtaining his PhD from Cambridge University in England, he has his dream job of designing computers for people with disabilities.

My daughter, Dinora, adopted at an early age from Guatemala also joined us weekly and on trips with the recreational group and she also was an Assistant Sunday School Teacher. She and I did some fund raising to help open the soup kitchen, Tus Manos, in Antigua, Guatemala. Her most rewarding adventure was to spend the summer after high school graduation in Guatemala to help open the soup kitchen. I was there on the actual opening day, and the joy was overwhelming. Dinora had on an apron and a huge smile as she passed out food. She made sure to make eye contact and was friendly with everyone by giving them a pat on the back. Even the individuals who were disheveled and barefoot coming through the line with their eyes glancing downwards were rewarded by the accepting, compassionate friendliness of those passing out food. When they left the line, tray of food full, their eyes were looking upwards, often filled with tears. Dinora said to me she was thrilled to come and help out “her people” because she had led such a privileged life and they had not. I had brought with me a collection of new flannel shirts (on sale so cheaply I could not pass them up.) Dinora and I passed them out and the men, in tattered clothes, would humbly bow and thank us. It was a wonderful, uplifting trip. We traveled in a beautiful country and met many beautiful people who touched our hearts forever.

My son, Steven, who has Attention Deficit Disorder, Asperger’s Disorder and Obsessive Compulsive Disorder also attended the recreational group as an infant and toddler. Despite his disability and limited social skills, he developed compassion for people with all types of disabilities from all walks of life. When he was about 8 I remember traveling with him in downtown Boston where there are many beggars on the streets and in the subway. That child had to give money to each and every one! He gave out all of his own money and then asked me for more. As we were about to get on the last subway he saw a disheveled man playing the guitar and he asked for more money. I had no more dollars to give and he said he couldn’t get on the subway until we gave this man something, so we both dug in our pockets to look for change, and managed to scrape up 37 cents which he ran over and put in the gentleman’s bucket. Now, at the age of 17, he uses his obsession with reptiles to volunteer at a reptile education center. He stands at the entrance with a huge boa constrictor, python, turtle or alligator, allowing people to pet the reptile and answering all of their questions. He may not be good at social interactions, but he found his own niche in which to volunteer.

Currently, my 15 year old son, who has Dissociative Identity Disorder from years of early childhood abuse, uses his “game show host” personality to call for the monthly Bingo game with the recreational group. He is HILARIOUS! He puts so much humor and energy into the Bingo games that this is their favorite activity. He also uses some of his own money to buy little Bingo prizes when he sees something he thinks they might like. In return, he gets their acceptance and love. He likewise calls Bingo games for a local nursing home. As a boy who desperately needs affection and acceptance due to his disability, it would normally be inappropriate for a 15 year old boy to hug adults. However his Bingo groups are comprised of many adults who have no family and no one else to care for them. They need his hugs and affection as much as he needs theirs. It is a win-win situation.  He also volunteers at his school as an “Autism Buddy”, a social group where the high school students provide activities and social interaction for younger children with autism.

My 13 year old daughter who is deaf and has Post Traumatic Stress Disorder and Attention Deficit Disorder loves to come to the recreational group so she can be a sighted guide. She has taken great pleasure in her ability to do this. She regularly guides women who are blind into the ladies room, showing them where the stall is. She has helped to feed individuals who need assistance, gently wiping their mouths if food drips down. She also volunteers in the same nursing home as my son. Her job, however, is to clean out the bird cage, (which she LOVES,) and to play Rummy with the residents. They are buoyed by her youth and enthusiasm and she loves it because she is helping.

Perhaps the greatest opportunity my children have had is having an uncle, (my brother) as a relative. My brother was born with Rubella Syndrome in 1951, He is developmentally delayed, legally blind, has a severe speech impediment and has a hearing impairment which has progressed to profound deafness. He became schizophrenic when he was 18, and this has gotten worse, with most of his conversation having to do with his rides on the Starship Enterprise. His head is greatly misshapen, he has only 2 teeth in the front, one side of his mouth droops down, he drools, and he has difficulty walking around and frequently trips without a strong arm to hold onto, My children adore him! He generally lives in a group home but I pick him up on Saturdays and holidays to spend a day with our family. He is greeted by a “Hi, Uncle Steve”, a hug and a smile by them all. The children are used to being a sighted guide for him, and will sometimes argue over who gets to do it. My brother is very easy to please. His greatest joy is riding the escalators at the mall, getting a diet coke and, to make it a perfect day, having a piece of cheesecake or a sundae. We took him yesterday to the mall, riding around for 1/2 hour on the escalators and going to the movies. He got his soda at the movies and afterwards we stopped for dinner and cheesecake. He was ecstatic! When we brought him back to the group home, he clapped his hands and told them it was the best day he ever had! Seeing someone so happy over simple pleasures is extremely humbling. Although caring for him is not in itself “volunteering”, it contains the same components. We do something to make his life better and we are rewarded by his happiness and joy. Money can’t buy the sense of satisfaction that brings to everyone involved.

In summary, to volunteer is a gift we give to ourselves as much as the gift we give to others. Most people, including children and people with disabilities, have the ability to volunteer. It is an extreme self-esteem booster and makes life much more fulfilling. I highly encourage it.

A Whole New Meaning to Swimming With the Fishes

I have been fortunate in that my mother loved to travel and she often took me and one of my kiddos “along for the ride.”  One of my favorite spots was Discovery Cove, part of Sea World in Orlando.  Discovery Cove offered a make believe coral reef with lots of beautiful fish swimming around and huge stingrays that would swim close and touch you. It was so amazing, and was as close to real snorkeling that I had ever been. With a life jacket, snorkel and mask on, Marie, (my 13 year old daughter who is profoundly deaf and has PTSD) and I spent the day swimming around, amazed at the many varieties of tropical fish. It was like being in another world.  In one spot, there was a glass wall and you could swim next to sharks.  Up until this point in my life, this was as close to real snorkeling, and SHARKS, that I would get! It was awesome!

Near the end of the day, Marie’s medication began to wear off as we had stayed later than I anticipated.  She began to get anxious, but she didn’t want to leave.   I told her one more swim around the coral reef and then we’d head back to the hotel.  As had been happening all day, a stingray came up and touched Marie on her leg.  In fact, she had been petting them for most of the day, calling them her “friends”.  For some reason, this touch was different than the rest.  She became frightened and had a full blown panic attack.  She started SCREAMING her high pitched scream and she was signing (in American sign language,) “The fish is going to eat me!” (Why the fish would think she were any tastier later in the day than earlier, I don’t understand.) To get away from the stingray, she climbed onto my back.  I tried to calm her down, but it was difficult to do sign language while trying to swim with a child on your back, and she was screaming so loud her eyes were shut and she couldn’t see what I was saying anyway!  By this time, we were halfway around the coral reef and as far from the shore as you could possibly get.  Marie decided she was not safe enough on my back because her toes were still in the water,  so she climbed up on my shoulders to get completely out of the water!  Unfortunately, that meant I’d have to sink UNDER the water for her to stay OUT of it.  I started screaming along with her.  (Albeit alternating choking with water and screaming.) She was truly frightened the fish was going to eat her and I was truly frightened I was going to drowned.

They have several life guards there and our dilemma was not hard to miss, with Marie standing upright and me bobbing in and out of the water choking. Because we were so far out, it took the lifeguards what seemed like an eternity to reach us.  When they got to us, Marie refused to let the lifeguards touch her, screaming and kicking at them.  (Good old Post Traumatic Stress Disorder shows up when you least expect it!)  What three of the lifeguards ended up doing was supporting me in the water while she continued to stand on my shoulders and scream. Of course there was a huge crowd of onlookers on the beach, some taking photos.  (We really were quite a sight!) Once on the beach both Marie and I collapsed into the sand.  The life guards asked if we needed to go to the hospital, but I was still breathing and Marie had stopped screaming and was crying quietly, so that meant we had both survived unscathed.  Well, maybe not totally unscathed, I’ve lost my wanderlust  for snorkeling!

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