Archive for the ‘OCD’ Category

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

easter bunny

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/

 

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ADHD, adoption, autism, Children, deaf, DID, disabled, Easter, Easter bunny, family, foster care, kids, life, mentally ill, news, OCD, parenting, PTSD

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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.

75502-004-47C41965

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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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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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.

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Darn it! He’s a Teenager Now!

I have been remiss in my writings, basically because I have been involved in the day to day activities of raising three teenagers with serious disabilities.  For some reason, these disabilities were not serious before.  I could find humor and joy in every day facets of our lives. Now that they are teenagers, humor sometimes escapes me, replaced by more serious concerns such as driving, (yes, every parent’s nightmare has come to me,)  and drugs.  Well, “only” a little marijuana, used by my nineteen year old son with ADHD, Asperger’s and OCD who has refused to take his more traditional drugs.  He says that pot helps control his symptoms better, and although I was mortified, by all standards except the legal one, pot is the lesser of the evils of the strong psych meds he was on.  The meds he insisted made him feel “out of it” and nauseous all day.  The ones that either plagued him with nightmares and kept him up all night, or made him so tired he could not function well.  Steven has tried a boatload of drugs, none of which controlled his symptoms as well as pot.  This is a very difficult concept for a sweet little old mother like me to understand.  I still tell him NO NO NO NO and I kick him out of the house every time he comes home smelling like…well, YOU know…   But I have to admit that his mellow mood also mellows me out, erasing the fear I always had that he would have a violent tantrum at any time, punching a hole in the wall, or throwing the newspapers so they scatter around the living room.   Please don’t send the police to my door, my precious door that does not have a mark on it because Steven no longer kicks it.

Steven has reached “adulthood” in the legal sense, (although he will never be an adult in my eyes.) He can refuse to take his medication and I can’t make him.  Not that it helped all that much anyway.

His life is in flux.  His disability prevents him from doing a regular job because focusing is still an issue for him.  The only thing he had been interested in were reptiles, alligators, snakes, turtles. (OCD makes strange obsessions.)  He had volunteered at a local facility for such creatures, and loved it, but the facility closed down.  Now he struggles daily to find something to do.

I recently visited a friend who lives near the Everglades in Florida.  She lamented the ever present alligators, and their risk to her little pups, Scottish Terriers.  She told me how the alligators show up in the man made lakes in mobile home parks, and on the banks of the rivers nearby.  How Steven would LOVE to live in such a place, I thought.  He would make a wonderful critter catcher in that area!  It crossed my mind to purchase a small house in Florida, use it as a vacation home, and bring Steven down to live there.  He would be in his glory working in a company that catches nuisance alligators.  Or he could use his experience as the alligator wrestler he was for the previous reptile facility that had closed.  I wonder how many employees fill out an application at the alligator tourist spots having already had such experience as an “alligator wrangler”.  I became excited at the idea that the perfect job DOES exist for him, except it is in Florida, 2000 miles away.  Maybe, if I am ever able to save any money, I can follow through on that vacation home dream and find a place for Steven where he can live happily.  And maybe then he won’t need the marijuana…

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The Baptism from HELL

I don’t mean to be blasphemes, but I am sure that all you parents out there with “difficult” children can understand what kind of hell we live with from time to time.  Most of the time raising children is heavenly, or at least like purgatory. However,sometimes there are those moments when it is just plain hell!

Our son, Steven, was adopted at the age of 3 after living with us since birth.  He was born addicted to heroin and cocaine, to a mom who was an alcoholic and, (GASP) cigarette smoker.  Although we loved his cute little face very much, the rest of him left much to be desired.  He was hypersensitive to sound, touch, smell, noise and any little thing that altered the peace in his little world.  Even as a 6 month old he would bang his head on the highchair if he was “stressed”.  He needed a strictly consistent schedule with no tags in his shirts and no loud noise from the tv.  We altered our life to fit his needs and things were fine, for the most part.

Then came his Baptism day.  First off, it was a change in his schedule, something his 3 year old body did NOT appreciate.  THEN, he had to get dressed up.  I remember thinking he’d never wear a suit and tie, or even a tie for that matter, so I managed to buy a nice pants/sweater outfit.  Unaccustomed to wearing sweaters, his body squirmed in this outfit.  Our church had arranged for a private ceremony, understanding Steven would not be able to be baptized during a regular church service.  We used the little chapel so as to cut down on the anxiety he would feel in the huge church.  His dad carried him to the altar with Steven’s head buried in his chest.  My husband, myself, our older son Francis and daughter Dinora stood by with Pastor Lorraine to begin the baptism.  Steven looked up and saw the baptismal water.  ”OOOOOOOH NO!!!!!!”  he screeched.  ”You’re not going to put that water on ME!!!!!!”  (He also had a fear of water I’d forgotten to mention…)  He jumped down from my husband’s arms, crawled on the ground, and crawled into the first dark, quiet place he could find…under Pastor Lorraine’s vestments!  There he was, under her vestments which were over her dress…I was MORTIFIED, (thus the “HELL” part!)  She, however, as the parent of three rambunctious kids, thought it was funny.  (God bless her!!)  She felt down for where his head was and she calmly proceeded with the baptism.  (Fortunately, you could see his head clearly outlined in her vestments.)  She did the whole ceremony with him completely covered.  I had a camera to document this momentous occasion, but was at loss of what to take a picture of!  When is it over, his dad gently dragged him out and home we went.  For any other child, a celebration would have been in order, but for Steven, it was home to his usual routine.  Same day as any other day.

PS.  I obviously didn’t learn from this experience as we attempted first communion for him.  At the age of 12, he met with our pastor for one-on-one communion classes as he was unable to participate in the standard classes.   He was then to join the other children on “First Communion Day”.  When the pastor called out his name, he promptly crawled underneath the pew, and curled into a tight little ball, where he stayed for the rest of the service…

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Pain is In the Eye of the Beholder…Part 1

(Because this post is too long,  I am going to split it into 2 parts, one now and one in a few days. I don’t want anyone out there reading to get bored, you know!  If you want to be sure to read the second part, please click on “E-mail Subscription” on the side of this post and put in your e-mail.  Then, the 2nd part will be delivered right to your front door, like a newspaper!)

I happen to be blessed (?) with two sons who do not feel pain normally.  It took me a while to figure this out.  I  knew when I took them to the playground when they were three, four and five years old, they would run around, fall, trip and bang into things as much as the other kiddos did, but they never came up to me crying, like the others did to their moms.  I actually thought how lucky I was that they weren’t “whiney” like the other little ones, whom I considered to be “wimpy”.  As the boys have aged and accidents have happened, I have learned that the fact that they never came crying to me over little hurts and bruises was a sign that they did not FEEL the little hurts and bruises!

Steven, who was born addicted to heroin and cocaine, has always had “wiring” that is abnormal.  He has had a lot of diagnosis; ADHD, OCD, ODD, BPD, autism, Asperger’s, and sensory integration deficit, but to me it all boils down to the fact that his nervous system/brain developed in the embryonic fog of a drug addicted, alcoholic birth mother.  Like many children diagnosed with autism, he has severe sensory integration deficit.  When he was younger, he would throw himself on the floor, cry and bang his head if there were a tag on his shirt or if the seam in his sock were crooked. Light touch actually HURT him.  I remember taking him in the grocery store with him sitting in the baby seat when he was about 2 years old.  If I absent-mindedly gently rubbed his little arm, he would scream and yell “STOP HURTING ME!” (to which I would slink away hoping no one in the store heard or noticed…)

Steven cannot tolerate being touched gently, but he loves deep, hard hugs, BEAR hugs.  These feel good to him.  This “wiring problem” (as I affectionately call it,) impairs his ability to realize if he is hurt.  The best example of this was one summer day when we were cleaning out the freezer.  It was one of those old fashioned freezers where frost had built up all around the inside.  After I scraped it out, we took the slush outside and thought it would be fun to make snowballs out of it.  There we stood in the front lawn, throwing snowballs at each other in the 80 degree heat!  Steven got hit in the eye with one, but quickly brushed it aside and threw another one back. We had great fun, playing until the “snow” had melted.

The next morning, Steven woke up and his eye was bright red and swollen.  He did not complain of any pain, but I still  I quickly called an eye doctor whisked him off for an exam.  While at the counter registering, the receptionist asked me how it happened.  I told her he got hit in they eye with a snowball.  She stared at me for a long time, so I gave her the cleaning out the fridge story.  Again in the examining room, the assistant asked me how it happened.  Snowball again.  She wrote it in his chart.  ”Hit in eye with snowball.”  It was August, and it was pretty funny.  When the doctor examined his eye, he was incredulous that Steven was not shrieking in pain.  It seems that a piece of ice had scratched off pieces of his cornea!  It is supposedly very painful, but did not faze Steven in the least.  He was sent home with cream to put in his eye every several hours and he healed up fine.

Angel, on the other hand, does not feel pain because he has Dissociative Identity Disorder.  In layman’s terms, this disorder developed because he was so badly abused as an infant and toddler that in order to protect himself, his brain split off into “parts”, with one “part” absorbing the pain of the abuse to keep the other “parts” safe. This was a coping mechanism he developed in order to survive.  (Of course, when he was younger, we were unaware of this diagnosis.)  One day, when he was about four years old, I went to pick him up at pre-school.  The teacher told me he had been pushed off the top of the jungle gym by another child and that he may have hurt his hand because he was holding it a little funny.  He was not crying and did not complain of any pain, but I decided to zip him over to the emergency room anyway to have it checked out. He smiled at the doctor who examined him, and seemed to enjoy the attention.  When the doctor examined his hand, it was obvious that the problem was not his hand, it was his entire shoulder and arm.  They did an xray, and we learned he had broken his shoulder!  Again, the doctor questioned how he could possibly not be screaming in paid, and especially how he could have managed to spend the day in preschool!  At the time, I did not know how it was possible either!

These are just 2 instances where Steven and Angel were hurt and did not acknowledge the pain, but I was able to witness this phenomena several more times, episodes which I will share with you in Pain is All Relative, Part 2!

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The Turtle was TTTTTHHHHHHIIIIIIISSSSSSS Big! (Another Fish Story)

My son, Steven, has autism, later diagnosed as Asperger’s syndrome.  He has always had accompanying obsessive compulsive disorder, attention deficit hyperactivity disorder and sensory integration deficit.  Our house is on a little lake, and one of Steven’s quirks is that he will not touch the water.  This is very ironic because his Asperger’s obsession is with reptiles, turtles and fish.  He often spends the entire day in our backyard catching fish and turtles.  Often, he takes the canoe out and paddle around, trolling for fish as he goes. He will never step in the water, though.

Our family has many get-togethers in our backyard.  With a paddleboat, canoe, kayak, rowboat, sailboat and raft, there is always plenty for the children to do.  While Steven likes to play on the raft with his friends, he always paddles out there in the kayak, again never putting a toe in the water.  He would often scare his friends, siblings and cousins with tales of HUGE turtles which lurk under the surface.

One afternoon a few years ago, while I was taking a nap, (one of my favorite activities,) I heard Steven screaming at the top of his lungs.  I’d never heard him scream like that before.  (I’d only heard tantrum screaming, nothing like this blood curdling sound.)  I leapt up out of bed and ran outside to see what I assumed would be a tragedy awaiting me.  There was Steven, in the canoe, holding his very large fish net which he often used to catch fish.  In the bottom of the canoe were 2 of the largest turtles I have ever seen anywhere!!!  They were more than 2 1/2 feet across!  He was standing on the seat screaming and I started screaming also.  I learned that he had caught them in his net while they were “stuck together” (ie mating.)  I’m looking at these 2 huge snapping turtles thinking there is no way they belong in our little lake…they should be in a zoo somewhere!  While I am thinking, one of the turtles casually climbs over the side of the canoe and falls back into the water!  After much wariness, but a sense of what would be the right thing to do, I suggest Steven flip the other one back into the water with the oar.  As he tries to do so, the turtle snaps at the oar breaking it, but not before gaining enough momentum to slip over the side of the canoe into the water.  Steven looked at me and said “I  TOLD you there were big turtles in the lake!”  This sighting definitely put a crimp on swimming for the rest of the summer…

As a follow up to this story, last summer one of the huge turtles was found dead on our beach.  Its legs and head were bloated and it looked awful.  I called the city’s animal rescue league and asked them to come get the dead turtle.  The woman who answered the phone obviously thought I was demented.  ”Just THROW it back into the LAKE, ” she said several times.  I told her several times it was too BIG to just throw back into the lake, and she reluctantly agreed to send “someone” out to take a look.   The gentleman came in a city pick=up truck.  He ambled out of the truck in our front yard, put on gloves, and swaggered into our backyard, anxious to see this “huge turtle.”  As he got closer, he let out a loud “HOLY SH*T!”  Then he called for back-up. It took 2 men to carry this thing and plop it in the back of the pick-up truck!

Ever since first finding the turtles, for some odd reason, the children are not so anxious to go swimming…

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Stay Away from Me With That Umbrella

It happened again this morning.  It was pouring rain out.  I have to walk about 4 blocks from the parking garage to where I work.  It had been raining a LOT lately.  I had on boots and my jacket with a hood pulled over my hair to keep it from getting wet.  Several people walking near me kindly offered to share their umbrellas with me.  I politely declined.  You see, I have a real phobia about umbrellas.  Not much in this world scares me, (I have 5 kids after all.)  I was not afraid of sharks after seeing Jaws.  I was not afraid of snakes after seeing Anaconda and Snakes on a Plane. But put an umbrella near me and my knees begin to shake and I go pale. (I hate the video of Gene Kelly in Singing in the Rain!)

This fear dates back to my childhood.  I don’t know how or why, but I got the fear that I was going to be poked in the eye with one of those little knobby things on the spokes at the end of the umbrella.  Getting wet in the harshest downpour could not compare to the fear of getting poked in the eye, so I would never use an umbrella.  Of course, as I grew, I have realized that this fear is slightly irrational.

When my son, Francis, was going to Cambridge University in England, he took my mother and me on a guided tour of London.  Being London, it was raining of course.  Francis and my mom had umbrellas, I chose to get wet.  No big deal.  What’s a little water?  Anyway, we were in front of Buckingham Palace and Francis wanted to get a picture of my mom and me.  She and I put our arms around each other and smiled for the picture.  He took the picture JUST as SHE POKED ME IN THE EYE with her UMBRELLA!  It is incredible to have my worst fear captured in a picture.  The good news is, my eye stayed intact in my eye socket and didn’t really get poked out. The bad news is, I still have my fear of umbrellas….

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Who Cares What I Look Like…I Saved Money…

Okay, I am officially “crazy”.  I know that is not a politically correct term, but yesterday I did something so obsessive that I realized for the first time in my life that something is seriously wrong with me…I bought make-up that did not match my skin color BECAUSE IT WAS ON SALE!!!!!!

I have always been a “frugal” person, coming from a long line of “frugal” relatives.  (Alright, actually only one, my dad, but he goes way back to my childhood so it is considered a long line to me.) My father was so “frugal” that is retrospect I realize he obviously had obsessive compulsive disorder.  Although we were a middle class family, we NEVER went out to eat.  (Well, there was that ONE TIME we did go out to an ice cream restaurant on their 25th anniversary, but other than that we did not eat at restaurants.)  He did not want to spend money on heat, so we used a wood stove. (We live in NEW ENGLANG!)  He did allow us to have electric blankets, but we could only turn it on to warm the bed, shutting it off when we went to bed.  So, I’d fall asleep all warm and cozy with happy dreams and wake up in the middle of the night dreaming of Antarctica. He also did not want to spend money on hot water, so he devised a type of solar hot water heater by threading water pipes on the roof and then into an unplugged water heater.  If it was a very sunny day, we could have a warm bath at night, but only once a week because he didn’t want to waste water.  We were fortunately to live on a lake so I did a lot of swimming to get clean.

We ate only what was inexpensive and on sale:  lots of rice, pasta, mashed potatoes and canned vegetables.  Not so much fresh vegetables, fruit or meat.  My father was not a vegetarian because of moral concerns, but because of the cost of meat.

For the beginning of school in September, I would be able to choose 2 outfits at the nearest discount store.  I would wear them alternate days during the week…all year! If I happened to grow during the year, (as of course often happened,) they would get a little tight.  Fortunately, my mother planned for this by buying them extra big at the beginning of the school year! She loved buying her and my father’s clothes and shoes at the Salvation Army.  In fact, everyone got a good laugh at my wedding when my mom came up and knelt down for communion and there was $1.99 written in black marker on the bottom of her shoe.  (You’ve GOT to laugh at stuff like that…)

My mother would cut my hair, usually crooked. When I became a teenager,  I tried to let it grown. I put it up in a “bun” like Audrey Hepburn in “Breakfast at Tiffany’s”, but it was so thin and uncontrollable that I usually ended up looking like Pebbles from the Flintstones!

We did go to the drive-in every Friday, and I was allowed the 25 cents to get popcorn, which was a huge treat for me.  During those days, you had to pay per person for the drive-in.  My father had me scrunch down low in the back seat so they would think I was under 12.  One day, when I was about 15, the person in the admission booth questioned my father about my age.  Because he would never LIE, he told them I was 15 but that he would not pay for me, and what difference did it make if he paid for 2 or 3 because they would still get some money.  The man in the admission booth dug in his heels…and so did my father.  To my huge embarrassment, my father made the long line of cars behind him waiting to pay BACK UP so that he could leave.  That was the last time we went to the drive-in.

Of all of the effects of economic frugality, the biggest one was that I never got a real Barbie doll.  I yearned for a Barbie doll!  I asked for one for birthdays and Christmas, but I always got the cheap plastic imitation Barbie dolls.  When I went to play with friends, they would take pity on me and let me play with their Midge doll, (Barbie’s “friend”,) but it was never the same as playing with my own real live Barbie. I think it is ironic that this is the one memory that has caused permanent harm to my psyche!

In retrospect, except for the doll, I did not know anything different.  I did not feel cheated or poor or economically deprived.  I learned to live with what I had and be happy. From an early age, probably because I had a brother who was severely disabled, I was empathetic with people with disabilities.  Although I did not see many children with physical disabilities in those days, there were many developmentally delayed students in the schools.  I would go out of my way to be friendly and helpful.  I had little tolerance for ignorant people who would fun of these valuable human beings, and I was known for my protective nature. I was fortunate to have had many friends in school.  They were not necessarily the most popular or the most fashionably dressed friends, but they were down to earth, friendly, and they appreciated their friendship with me. I was confident with myself, and I thought nothing of going up to a bully and telling them to stop picking on someone. Just like that, I’d have a new friend!  Sometimes I’d even make friends with the bully! I had a great time in school! My values were vastly different than other teenagers. This difference actually led into what I think is my best quality, the unwavering caring and acceptance of others.  Without this trait, I would not have become a social worker, and I certainly would not have adopted 4 children with disabilities!

Although one would expect I would rebel in the other direction, the one thing that could not help but rub off on me is frugality.  I started working at the age of 14 and paid 1/2 of my pay to my parents as room and board, (of COURSE.)  I finally had some disposable income and you would have thought I would spend it on clothes, haircuts and such.  NO.  I was a compulsive saver.  I saved to buy my own car at the age of 16 and I saved enough to pay for college at the age of 18. I am definitely not as frugal as my father, (who, by the way, died and left my mother with several hundred thousand dollars with which she happily used for the next ten years to travel to exotic locales.)  I do, however, get a big thrill buying things on sale with deep discounts!  I’m the type who would go to JC Penny’s or Macy’s and buy the seasonal items on sale at 80% off with an additional 20% off coupon.  Who can resist shirts for $3 or pants for $5?  I clothe my 5 children in this manner, always buying the year before for clothes they would need the next year.  Once, when a local department store went out of business, they were selling children’s clothing for 50 cents each. Who could turn THAT down?????  I bought 4 RACKS of clothing!  Fortunately, I was in the process of adopting our daughter from Guatemala, so my mother and I stuffed all of the clothing in 8 large suitcases which we took with us to Guatemala.  We each put our own clothes into backpacks which we carried.  The orphanage which had so tenderly cared for my daughter was thrilled to get such an assortment of new clothes.  The director actually cried because she said all they ever got were dirty and ripped hand me downs.

I no longer do the grocery shopping in my house because, like my father, I would only by items which were deeply on sale.  My husband is not a canned vegetable kind of guy.  In fact, I was lucky enough to marry a cook, so he does all of his own shopping, regularly visiting the local farm for fresh produce or the local meat market for fresh meat or fish.  My cupboards and refrigerator are always full of great food and I never have to worry about how much it cost!

Which brings me back to my drugstore sojourn yesterday when, browsing the aisles, I noticed that some of the make-up items were 75% off.  (PLUS I had a $5 off coupon for the store!  What could be better?)  I picked out the marked-down items and proudly brought them to the register.  I was happy!  I was frugal!  I was an idiot!  When I got the items home and tried to use them, I was horrified to learn I had bought powdered make-up such an ugly color that when I put it on I looked like I had pancake make-up on my face. (I’m not talking about pancake make-up they were in the movies, I’m talking about make-up that actually looked like I was wearing pancake flour on my face!)  I tried the blush and it was so red that my cheeks looked like a clown.  The lipstick was brown.  (UGH!)  The mascara was not waterproof, (something I HATE because by night time I being to look like a raccoon.)  And WHY hadn’t I noticed that the nail polish was green???  For the first time in my life I looked at my white powdered, red cheeked, brown lipped self in the mirror and I thought “I am officially crazy!”  Oh, well, its a good thing that I think I am pretty on the INSIDE!

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