Posts tagged ‘OCD’

I Won’t Wear That to Church Anymore

I’m just returning from church.  I go to an inspiring, welcoming church, which I love!  Everyone is friendly, and we make a special effort to include people with disabilities.  We have pew cut-outs throughout the church for people in wheelchairs.  (After all, just because you are in a wheelchair does not mean you want to be relegated to the back row, or, even WORSE, the front row.)  We have a sign language interpreter and large print materials for the church service.  If a person who is totally blind attended, we would no doubt get the materials in Braille.  People with developmental disabilities, as well as people with mental illnesses are welcomed with open arms.  Having the children I do, it has been a God send (literally) for our family.

The congregation members help out during the service in many roles, and today I was helping to serve the Wine.  The people serving communion stand on a step while serving the bread and wine.  Learning from an earlier experience when I fell while trying to get a group together for a photo, I always firmly grip the hand rail while walking down the few steps. (Falling while taking a picture is understandable, but more care needs to be taken with the wine. I am sure it would stain the carpet terribly!) When offering the wine to the congregation members, I frequently have to bend over because I am tall and on a step, and they are often shorter.  Today, after I bent over the first time, I noticed that my shirt parted from my body in the front, and everyone had a clear view down to my belly button. (Well, they COULD have seen my belly button if my big breasts had not gotten in the way.)  I was mortified!  While I do not embarrass easily, once I notice something askew, of course I have to fix it.  So, I did the only thing I could do under the circumstances; I squatted for each person.  Do you know how incredibly hard it is to hold a squat at one particular level and then move that squat up or down depending upon who was next?  If I were athletic, it may have been easy.  But I’m not…    I felt like one of those baby crib toys, all scrunched up (squatting low) and then being pulled straight, (standing tall) and while music plays it slowly moves up to the low squat again.That’s the way I was today; up and down and up and down all to the beat of the choir’s music.

I will never wear that shirt to church again…

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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/

He Ain’t Heavy, He’s my Brother

I led a very untraditional lifestyle when I was growing up.  My father, whom I later realized was schizophrenic, had the wanderlust to travel, which our family did for about 6 months of the year. He would remove me out of school and we would take off for various areas of the country, living in our Volkswagen van. ( Although I am sure that today’s public education system would not allow it, somehow I think my father would have taken me out anyway.)

It was quite an adventure for a child like me.  I have a vivid memory of cracking eggs in a big, black, iron frying pan over a campfire in the Badlands in South Dakota.  The rocks the pan was on were not sturdy, and the pan fell sideways with the eggs slowly leaking out onto the pine needles on the ground.  (Clumsy then…still clumsy.) I remember traveling in southern Georgia, driving for miles watching red clay cover everything…the houses, the cars, and even the clothes hanging on the lines.  It was at the beginning of the civil rights movement, and I was uneducated in this area, (probably because I didn’t go to school!) The whole concept of a bathroom for “whites only” was a shock to me.  Did that mean that only people wearing white clothes could use it?  (I’m picturing nurses, dentists, pharmacists…)  I couldn’t use it because I had on my only pair of pants, jeans, and a multi-colored t-shirt. But I had to go to the bathroom baaaaad, where would I go?  Behind the bushes? How degrading!  My misunderstanding of this concept is now a slight reminder of what it felt like be African American in the 60′s. I also have the memory of  a bear at Yellowstone Park coming onto our campsite to eat our dinner as we all huddled in the car. My brother, Curtis, was upset because he had left a package of Cracker Jacks on the picnic table.  We had to restrain him from leaping out of the car to get it.  Afterwards, I was not so keen to sit by the campfire…

But most of all, I remember my constant companion; Curtis.  He was four years younger than I was, and he had been born with Rubella Syndrome; developmentally delayed, cleft palate, legally blind, and severely hearing impaired.  He was my buddy.  Because my dad was extremely frugal, (ie obsessive compulsive disorder frugal,) I did not have many toys to play with.  So, in addition to reading a lot, I played in our surroundings with my brother.  I have a memory of  sitting by a stream, sun shining down on the water through the leaves on the trees. Curtis was happily splashing about in the shallow water.  I was looking for rocks that somewhat resembled people.  (They were no Barbie dolls, but some kind of looked like Alfred Hitchcock and Potato Head.) All of a sudden I heard a whoooooosh!  Curtis had ventured too far into the water and the current started to carry him downstream!  Fortunately, I had long, slim legs (in those days,) and with a few strides, I picked him up by the back of his pants. He was laughing heartily.  To him it was a real adventure.  Like the poor person’s substitute for a ride at Disneyland!

We actually had a lovely childhood together. I had to carry him everywhere because he could not walk sturdily.  Carrying him was just a natural way of life for me.  I don’t know why, but I never thought to be embarrassed by him, (although his screeching and attempt at speech WAS pretty scary).  I never ever thought of him as a burden.  He was just my buddy, Curtis.

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My parents rarely took pictures.  (The money thing again…) But I do remember ONE picture.  It was a picture of me and Curtis, standing in front of Mount Rushmore.  I was characteristically giving him a piggy back ride.  The photo shows Curtis, looking over my shoulder, eyes squinted shut by the glare of the sun.  I was wearing a stupid, treasured, red velvet derby hat, (you know, like jockeys wear.) As the dead presidents loomed behind us, I gave my characteristically stupid, toothy grin, (like all children do when their parents ask them to smile.) And on that day, I first heard the song from Neil Diamond which fit my sentiments exactly: “He Ain’t Heavy, He’s My Brother”.  It was a powerful moment to think that someone had put into words what my life was like.

I was so very lucky to have been raised the way I was because it formed my personality, my temperament, and my compassion for others. I personally cannot take credit for the way I live now, fostering and adopting children. I am not selfless, nor amazing, nor wonderful, nor any of the other adjectives readers have used to describe me. I am simply living my life the way I was raised and it is a wonderful life!

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Link to my book  The Apple Tree: Raising 5 Kids With Disabilities and Remaining Sane

 

He Ain’t Heavy, He’s My Brother Lyrics

The road is long

With many a winding turn

That leads us to who knows where

Who knows where

But I’m strong

Strong enough to carry him

He ain’t heavy,he’s my brother

So on we go

His welfare is of my concern

No burden is he to bear

We’ll get there

For I know

He would not encumber me

He ain’t heavy, he’s my brother

If I’m laden at all

I’m laden with sadness

That everyone’s heart

Isn’t filled with the gladness

Of love for one another

It’s a long, long road

From which there is no return

While we’re on the way to there

Why not share

And the load

Doesn’t weigh me down at all

He ain’t heavy he’s my brother

He’s my brother

He ain’t heavy, he’s my brother

He ain’t heavy, he’s my brother

written by Bobby Scott and Bob Russell

performed by Neil Diamond in 1970

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

The Dance of the Snake Goddesses

Forgive me for re-posting this from a few years ago, but I thought you might enjoy it as it is a New Year’s Eve story…

snake-Dev-Khalsa

photo from Ophidiophobia – Fear of Snakes (Picture by Dev Khalsa)  honorslounge.com

A very conservative lawyer friend had a very conservative lawyer wife who had taken up belly dancing.  She and 2 friends were so skilled in this talent that they were chosen to be performers for a large audience for First Night, the annual New Year’s Eve celebration in the city.  For an added “twist” to their act, my lawyer friend asked if his wife could borrow one of my son’s 5 foot long boa constrictors for their dance.  I had plenty of reservations, but I said okay. (It is always good to keep a lawyer friend happy because you never know when you will need a lawyer’s help.)  The ladies came to our house, and practiced with the snake while my son, Steven, who is very familiar with snakes, supervised.  The practice went very well, and the ladies excitedly decided to bill their act as the “The Dance of the Snake Goddesses.”

Well, New Year’s Eve came and I reminded Steven that we had to take the snake to the performance hall for the act.  Steven, who has Asperger’s and an anxiety disorder, was mortified!  There was no way HE was going to go to a large hall where there were a lot of people!  He handed me a pillowcase to put the snake in, and a bottle of alcohol “in case it bit someone”. He promptly took off on his bike peddling away to destinations unknown to me, (but far away from  First Night appearance.)  I started to panic!  These excited dancers were billed as the “The Dance of the Snake Goddesses” and they would have no snake!  Feeling extremely obligated to provide them with a snake, I decided to bring the it myself.  I had not minded the snakes when they were locked in the glass tanks, but somehow I was going to have to get up the nerve to actually take the snake out and put it in the pillowcase.  My hands were shaking as I undid the lock and took the cover off of the tank.   It looked docile enough, just lying there.  I reached in and managed to push it into the pillowcase using a long sleeved pot holder, proud of myself for not having to touch it.  Maybe I’d be okay! I tentatively carried the pillowcase to the living room, but I had miscalculated by not securing the top of it.  The snake’s head popped out, I pushed it back down.  It popped out again, and I pushed it down again.  This time it was stronger and its head came our farther.  When I tried to push it back in, it wiggle away from me and the whole snake came slithering out of the bag, which I promptly dropped.  There, on the floor of our living room, was a slithering 5 foot long snake!  I screamed.  My husband came to see what was going on, and he jumped up on the couch and screamed.  Even though I was shaking and my first instinct was to smash the thing over the head with a broom, I remembered  my commitment to our lawyer friends.  I gathered up my courage and, using the broom gently, I nudged it back into the pillowcase, this time immediately tying the top into a knot.

I was still shaking from this experience as I drove to the city with the wriggling pillowcase on the seat next to me.  I was feeling tremendous relief that I had at least caught it and was on my way to the performance. I even felt a little sorry for it, and turned the heat all the way up in my car so it could be warm.  (It had started to snow outside, which would mean there would be a larger than usual audience for an inside performance as the outside First Night performances would involved standing around in wet snow.  Great!  A bigger audience for what was sure to be a Snake Goddess fiasco!)

When we got near the theater, I put the pillowcase inside my coat to keep it warm. (MY I was brave!)  There was a line around the building waiting to see the performance.  I went to the head of the line, and quietly said to the guard at the door, “I have the snake for the performance.”  In his loudest voice, he parted the crowd by saying “Make way for the snake handler.  Make way for the snake handler!”  I wanted to hide!  As a 55 year old shaking, nervous, dowdy woman, I no more resembled a snake handler than a chipmunk would resemble Santa Clause.

I managed to get back stage with the snake and the belly dancers were very excited.  They carefully took him (her?  I couldn’t tell the difference,) out of the bag and began to practice.  By now I was shaking so badly that my stomach was in knots.  I was holding the bottle of alcohol (“in case it bit someone”.)  I was on the verge of tears, both from relief that I’d delivered the snake in one piece, but also fear that it would bite and there would be blood and screams and lawsuits.

The audience in the large theater was packed, standing room only.  The music for the dancers began.  They dramatically began the act hidden behind veils, with the snake on one woman with the head at one hand, draped across her back, and the tail on the other hand.  They did a dramatic dance, dropping the veils at different intervals for the audience to get a glimpse of the snake.  I could hear  “ooooh”  and “aaaaaah” from the audience.  I was hoping the snake wasn’t going to slither down and into the audience causing mass panic,  emptying the audience out into the street, or, worse yet, go around biting audience members with me following along with my bottle of alcohol. (Then I’d really need a lawyer for the lawsuits!)

Then something strange happened. The dancers dropped their veils, and the snake actually seemed to join in the dance.  Soon its head was wriggling in time to the music, its tail was swaying around, and it seemed to be having a grand old time!  It began to slither in time to the music (a pure coincidence I’m sure,) from one dancer to the next.  It was an amazing sight, the graceful gyrating dancers and the graceful gyrating snake, all moving in time to the music.  Mesmerizing. Amazing.  The act finished to a standing ovation, and darn it if it didn’t seem as though the snake bowed his head in response to the clapping from the audience.

After the show, the dancers gave the snake a few affectionate pats and back into the pillowcase it went.  I tied it in a knot, put it under my coat, and carried it back to the car.  I felt as though I was going to cry, but this time it was tears of relief.  I don’t know how I get myself into these situations, but, again, I’d come through it unscathed, with a little more respect for the reptile in the pillowcase next to me!

 

Thanks for reading.  If you want to read more here is the link to my book:The Apple Tree: Raising 5 Kids With Disabilities and Remaining Sane

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.

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…

Raising 5 Kids With Disabilities and Remaining Sane

Raising 5 Kids With Disabilities and Remaining Sane BlogMy name is Lindsey Petersen and I am the proud mother of five wonderful, very interesting children. Four also happen to have disabilities, but these have not been overwhelming obstacles.My oldest son, Francis, is legally blind. In this blog  I recount several humorous stories of his upbringing, including his fear of skunks. (He was petrified he would step on a skunk he didn’t see and it would spray him! He HATED tomatoes and the thought of having to take a bath in tomato juice was horrifying to him!) He managed to graduate college and obtained a full scholarship to Cambridge University in England to obtain his Ph.D. He has since become Dr. Scooter, (his nickname from college, named after Scooter from the Muppet Babies). He has obtained his dream job at an unbelievable salary!My 25- year-old daughter, adopted from Guatemala, came to us profoundly deaf, but was “healed.” (Read all about it in my blog!) She obtained her college degree in International Business and also has a job in her field.  She lives nearby with her boyfriend, her 2 year old son, and her percolating baby to be born in July.My 18-year-old son has a long history of autism, obsessive compulsive disorder, attention deficit hyperactivity disorder, and a severe sensory integration disorder. It really doesn’t matter what his disability is diagnosed as, I only know he was born cocaine and heroin addicted to an alcoholic mother, and his nervous system is wired haphazardly! He has managed to utilize his obsessions with reptiles into a volunteer position at a reptile educational facility. He is the one standing in the doorway at the entrance to the facility holding the 6-foot long boa constrictor, or the alligator, or the large lizard. He is not good with people, but great with reptiles! He has also recently become trained as an “alligator wrangler” for their alligator shows. (Really!)My 15-year-old son was severely abused prior to coming to live with us at the age of four. He developed dissociative identity disorder, (multiple personality disorder.) Life with this disorder is every day life for him. He and his “peeps”, (his name for his personalities,) live an interesting, eventful and sometimes very frustrating life, (like when one studies for the social studies test and another one takes it and flunks!)My 13-year-old daughter who is profoundly deaf came to live with us at the age of seven when the police found her wandering the streets carrying her infant brother looking for food. She was supposed to be a short-term placement placed with us because I know sign language. (I’m sure many foster parents have heard this spiel about a short-term placement.) Six years later she is still with us, adopted at the age of ten. Her deafness is not a disability, but her post-traumatic stress from early abuse and her attention deficit hyperactivity disorder have caused serious problems for her.

I am also the loving sister to a brother who is severely developmentally delayed, legally blind and deaf due to rubella syndrome. He also unfortunately developed schizophrenia when he was eighteen years old.

While my children’s lives may not normally be considered amusing situations, I try to look at them in an upbeat, positive, and sometimes humorous manner. I am a happy and optimistic person by nature, and to dwell on their problems would make me sad, a feeling not in my repertoire.

I began writing this blog in August because I was looking for a stress reliever. It is amazing how cathartic it is to vent one’s frustrations in writing! Also, I have had so many unique experiences and adventures that many acquaintances have suggested I write a book. I started writing the blog not so much with the thought of writing a book, but with the thought of putting down these events for posterity, so to speak, and to share my experiences with others. In the process, I’ve reduced my stress level and I have been encouraged by the more 20,000 people who have read the blog. I am sure our adventures and misadventures will continue. (My daughter who is deaf and has sensory issues and cannot stand tags in her clothes has entered junior high school, how is she going to be able to wearing a bra? My son with autism has started to notice girls. Unfortunately for him, girls are usually not very approachable when one is carrying a large snake! My son who has dissociative identity disorder, with the assistance of a specialized psychologist, is searching into the deep recesses of his mind to discover the abuse, which led to his disability.)

Thanks for joining me.  It’s nice to know someone “out there” is listening!

The Ups and Downs of Multiple Personality Disorder

Angel developed dissociative identity disorder during his early childhood.  The abuse he endured was so horrific that when he was being abused, a separate personality was born so that he would not have to feel the abuse.  Some are good, some are bad.  Some are female (?), some are male.  Some have aged with him, and at least 2 are still babies.  This is not something I could invent.  I am not making a big deal out of it.  “It” just is a fact of every day life that we try to live with!

Today, Angel was at a friend’s party.  He has one personality that is friendly, game show host upbeat, polite, thoughtful of others and the type of person who others adore.  Andy indicated he used this personality every time he went to a new foster home in the hope that that family would not reject him.  Unfortunately, this personality cannot maintain him for long periods of time, as other, more dangerous, personalities invarianly emerged.  None of the foster families could handle this “quirk”, this change from, dare I even say it, Angel to Devil.  Of course, it had not been diagnosed until he was in 3rd grade, so none of the families could have know what really caused his “severe mood swings”.

His “game show host personality” (as he calls it) was at the party today.  He lasted 6 hours before he called me to pick him up.  While I was at the party picking him up, 5 different people came over to me to tell me what a joy he is!  That he is the best kid around!  That he is so polite and helpful!  And I thought to myself, “If they only knew…”

Once in the car, Angel’s smile vanished and a look of sheer anger appeared.  He held his head an announced that his “parts” (which is what he calls “them”) were fighting.  He cannot let one part out for so long without the rest fighting, he had explained a few years ago.  It was excruciating for him to be so nice all day, he said.  I knew the anger he displayed could be dangerous, and I encouraged him to come home and take a nap, which he did.  He crawls into a fetal position and falls asleep.  In the middle of the night, the “part” that is so emotionally needy will wake up and scour the kitchen for food.  He will engulf anything edible, trying to feed his heart.  Sometimes when he falls back asleep with his stomach full, he will fall asleep and his infant self will come out.  Sometimes this self is so young that it does not yet know how to use the toilet, or it gags on regular cereal. (As an infant, it can only eat oatmeal.)

Angel knows about 10 of his parts.  He knows there are several “mad” ones that he does not know.  These are the  parts that were abused, and if they become known to Angel, then the memories of the abuse would come flooding back.  So they remain hidden as Angel could not psychologically survive the memories at this age.  Slowly they have become known to him, and some of the angry parts have joined the rest of the parts he knows.  Through them, he remembers foster mothers who left him lying on his back, crying for hours.  (In reality, when he came to live with us at the age of 3 he had a flat back of his head from lying so long.)  He remembers them coming in and yelling at him to shut up and not helping him.  He had 4 foster moms reject him, and it physically damaged his young brain.  The angry parts he does not know do bad things to him.  They resent the fact that he is living a nice life and they had to endure the abuse.  They have done things like destroy his homework, steal his cell phone, laptop computer, Ipod and other precious items.  (We’ve never found these items, and once he is conscious that they are gone, the trash has been taken away, so we had nothing to search.) Once, after his second computer  disappeared, I thought I had outsmarted the angry ones.  I locked his computer on a cord to his bedstand.  “There!” I thought.  Let’s see THAT disappear!”  It stayed fine for a week or two.  Then, one morning I woke up to Angel screaming.  “Someone” had stomped on his computer, breaking the keyboard and snapping the screen off.

Angel has been in therapy since the 4th grade, and he has made considerable progress.  Previously, he would study for a test in school and I’d test him on the way to school and he would know the material 100%.  A half hour later he would take the test and in handwriting of a 1st grader, he would flunk it wrong answers.  Through therapy, his parts have learned to cooperate.  Now only the “smart ones” go to school.

Angle has been to Baltimore and counseled by the leading expert in Dissociative Identity Disorder, Dr. Joy Silberg.  He knows the goal of his therapy is integration of all of his parts.  He has indicated he does not want that, that he would be lonely without them to keep him company.  It looks, however, that it will be a long time before he is completely familiar with those angry parts.  They are still protecting him because they are holding the memories of his abuse!

Random Thought on Life with Children with Disabilities

Thoughts Regarding Life with Several Children with Disabilities

  • When you have several people in your family, (ours has 6 at home,) put names on toothbrushes.  They are only available in so many colors…
  • Taking multiple pills is easier if they are placed in a little plastic cup.  Using a hand is not always the safest way to guarantee they will all get into the mouth. (Before I discovered this, I was finding pills here, there and everywhere, especially between the couch cushions.)
  • Keep extra pills and a bottle of water in your car in case you are delayed and a child would miss a dose.
  • Even though it might be easier, do not schedule doctor’s appointments at the same time for more than one child.  I have learned that there is a direct correlation between the difficulties to be discussed about one child with the doctor and the misbehavior of the other child.  I also usually take the child with the appointment out to eat afterwards for some “quality time”.  This seems to encourage good behavior at the doctor’s.
  • Don’t stress out over things that are unimportant in the scheme of things.  I try to clean house, but rarely have time to do a great job.  I don’t care.  I try to have a nice, family meal every night, but only succeed three or four nights a week.  I don’t care.  I try to dress my children nicely for the holidays, but they invariably pull the new clothes off to wear more comfortable ones.  I don’t care.  The house is not filthy and neither are the kids, and the kids are not starving or overweight.  My expectations are low so I am always pleased to meet them.  If I am able to exceed my expectations, I am thrilled beyond belief.
  • Find time for yourself and your significant other (if you have one.)  This relationship must be nurtured if he/she is expected to nurture the children.  Stressed out parents affect patience levels.  My children have always had a bedtime of 9:00 pm regardless of age.  They can watch tv, talk on their cell phones, read or do schoolwork, but quiet time in our house is observed at 9:00 pm.  This guarantees quiet time for the parents.
  • Take a few days off without the children.  Again, the parental relationship needs to be primary.  The statistics of divorce among families with children with disabilities is staggering.  I work hard at not being that statistic.  Going away without the children takes a great deal of planning, but the reward is a stress free weekend.  With my family, this is also costly because I need to arrange and pay for supervision for 3 separate children.  Again, it is less costly than divorce.
  • I make sure the children pick up the dog poop in the backyard BEFORE I rake the leaves.  (I didn’t do this once and boy was I sorry!!!)
  • I drive a mini-van with 4 bucket seats and a back bench seats.  This leaves 3 separate bucket seats so the children don’t have to sit directly next to each other and each one has a window seat. Rides have been quieter since I bought this car.
  • We try to live within our means financially.  No costly trips to restaurants.  No plays, concerts or other costly entertainment.  I buy clothes at 2nd hand stores and grocery store brand food. It is stressful enough worrying about the children without adding financial worry.
  • You cannot yell at a deaf child.  They will just shut their eyes and they cannot see you signing the angry words!

I find the humor and happiness in life:  watching my daughter  who is deaf in her dance class with a big grin on her face,  joking with my son who has dissociative identity disorder that he needs to check with “his people” before he makes a decision,  watching my 17 year old son with Aspergers when he is holding a wriggling snake and describing everything you’d ever want to know about it, and watching my husband cook supper with my daughter.  She used to be a very picky eater, but now she eats everything she helps cook.  Who knew?

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!

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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