Posts tagged ‘autism’

Mother’s Day and Delayed Rewards

mothers-day-pictures-10

Mother’s Day is a wonderful time to appreciate moms, step-moms, birth moms, adoptive moms, wanna be moms and women who love children. Bless you for making a difference in a child’s life! Don’t you get joy from seeing the joy in a laughing child, the shy smile of a child with twinkling eyes, and the serene look on their faces when they are sleeping?  Ahhhhhh……..what sweet little rewards of being with a child…

Most of us know, however, that it is VERY difficult to be a mom and sometimes the REAL rewards are far apart….

When my son Steven was in nursery school, it was a real challenge because of his autistic and ADHD problems. He had been born addicted to cocaine and heroine and his nervous system was “messed up” (my professional diagnosis.) Bringing him was a real challenge as he would kick and scream and cry, yet I did it because he could not hide out safely at home for his entire life with me vacuuming around him. At first, he would  spend most of the time in school hiding out in the “quiet tent”, playing with his plastic reptiles, sometimes soaking in the information from the teacher. Eventually, he sauntered out of his safe space to see what was going on.  He did not join the other children, but he was with them…a huge improvement.  Eventually, nursery school became normalized for him; part of his routine.  He would come home with his little projects; a paper flower, a painted snake, a play dough alligator.  I had learned not to make a “fuss” over these things, but to quietly tell him they were wonderful while his head dropped to his chest, eyes closed.  (He was not a child who could tolerate excitement of any kind.)  He survived two years in that classroom, and I wondered how he would act on “graduation day”, a celebration seemingly out of his tolerance level.  All of the children stood there in their little paper graduation caps, tassels dangling in front of their noses so they had to keep blowing them away.  All of the children except Steven.  The children sang a song, and thanked their moms and generally wowed the crowd with their antics.  All of the children except Steven.  The children walked in a nice, straight line to get their nursery school diplomas; all except Steven.  When all but one diploma had been handed out, the teacher walked over to where Steven was hiding under a chair, butt facing outwards. (If I had been smart, I would have sewed a smiley face on the butt of his pants, but, alas, I had been unrealistically hoping that he would join the other children in the graduation ceremony.)  The teacher bent down with the document and Steven’s  little hand reached out to grab it.  He quickly pulled the diploma out of sight.  Calm and cool under the seat, he had made it! Steven had graduated from nursery school without a tantrum, yelling or screaming.  He graduated in the manner he felt most comfortable, but graduate he did!  What a reward that was for me; I was a proud mother, indeed!

Diagnosed in elementary school with Dissociative Identity Disorder, Angel, has been very carefully placed in specialized classrooms.  Although intelligent and able to do grade level work, he frequently changes “parts”, (his word for his alternate personalities.)  His teachers and teacher aids, bless their souls, understand him well, and manage to educate him, even if it means repeating the same lesson because a different “part” was out that day, or giving his the test over because the “part” that studied for the test is not the “part” that took the test!  He has a baby part which necessitates him to just “veg out” in a large mushroom chair.  On those days, nothing was learned.  His condition has been kept top secret and no unnecessary teachers or others in the school know about it. Fortunately, he has been living a very “normal” life.  I have found one surprising benefit…he has a “Game Show Host” part.  I work with a recreational group of adults with disabilities, and every now and then we play Bingo or Family Feud. Angel, as have all of my children, regularly comes with me.  One day, he asked to be the moderator for Family Feud and his “performance” was beyond hilarious.  Usually a reserved child with groups, all of a sudden he channeled Richard Dawson! He went down the rows of “contestants”, gave each of them a peck on the cheek, and, while holding their hands in his, asked their names and a little about themselves.  The older women, who probably have not had much attention in their lives, giggled and smiled and blushed.  Then, Angel read each question with gusto, and made a “ding” noise when they got it right, and a loud buzzer noise if they got it wrong.  It was sooooooooooo funny because it was so out of character of the Angel that they knew.  This group of adult with disabilities, many of whom live alone on a minimum income with this once a week outing their only time out of their houses, were laughing hysterically that evening. Ever since then, they look forward to Family Feud and “Gameshow Host” Angel! What a reward for me to see Angel’s  give such joy to these wonderful people!

As a graduation present, my daughter, Dinora, and I took a trip back to her birth country in Guatemala.  She had done fundraising to assist with the opening of a soup kitchen in Antigua, and we were there for “opening day”.  We went shopping that morning, taking a little “putt putt” (2 wheeled open air taxi) into the village, giggling all the way as it bounced along. We bought flowers of all bright shapes and sizes, which stuck out of the putt putt on the way back, narrowly bopping passers by on the head. We spread the flowers out in front of  the  alter where a mass was to be said in honor of the opening of the facility. An overflowing crowd of people filled the make-shift pews, and it was a beautiful, emotional mass. Even though it was all in Spanish I seemed to understand every word, and I could certainly feel the emotion in the songs which the Indigenous Guatemalans sang.  After mass, people lined up for the food in their brightly colored clothing. There was my daughter, a young adult, behind the counter, dark hair pulled back into a pony tail, serving food with a beaming smile on her face showing dimples I never knew she had, (or perhaps she had never smiled so brightly.)  She was old enough and cared enough to give back something and help “her people” as she called them. I will never forget the sight of her…sweat on her brow, wiping her hands on her apron, making pleasant conversation in Spanish while smiling that amazing smile…   How could that sight NOT be a reward for a mom after years of raising a difficult teen?

Raising Marie has been the most difficult because of her many serious challenges.  When she came to us, she was street smart at the age of seven.(See post “All She did Was Scream and Say No! No! No!) She had no thought of danger and no social skills.  Although this may sound silly, one of my concerns was the fact that she would litter.  Get a drink; throw the bottle on the ground.  Have a piece of gum; throw the wrapper on the ground. Popsicle; stick thrown in the grass.    Repeatedly, I would have her pick it up and throw it away, explaining that we don’t litter in our family.  Marie could not have cared less…she did not want to be in our family anyway…  It took many months with us before she learned not to litter.  That’s why it shocked me when we were at the mall one day and she casually flicked the paper from her straw onto the ground.  My eyes widened, and just as I was about to ask her to pick it up, she bent down and picked it up, signing to me “I was just teasing you!  I know we don’t litter in this family!”  What a reward it was to hear her say that!  Finally, she felt part of our family!

My most favorite reward I saved for last.  For all of you parents, especially parents with children with disabilities, I will share that there has been no greater reward in my life than seeing my son, Francis, become a successful adult. Despite being legally blind, he has a college degree, is very successful in a job which he loves and through which he is benefitting others, and he recently married a great woman who not only loves him for the wonderful person that he is, but can also drive a car so he won’t have to take public transit to work any more!  There IS no greater reward for a parent; to know that the problems, fun, hard work, love, difficulties and dispersed joys of childhood have come together in a positive way. My son has officially “made it” to adulthood.  Now he can look forward to the rewards he will experience in raising his own children. Then I get the extra rewards of grandchildren!

To all of you mothers and others out there, Happy Mother’s Day!  Beyond the handmade cards, the flowers, the breakfasts and dinners out, and the gifts of the day, so many more rewards await you.  Sometimes you just have to be patient…

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

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…

 

 

********

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/

 

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…

Tag Cloud

Follow

Get every new post delivered to your Inbox.

Join 6,126 other followers