Posts tagged ‘anxiety’

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

 

The above description fit me perfectly.

Yes, me… perfectly.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

No more screaming from me…

 

 

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

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

 

 

 

 

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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

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Little Toe Socks inside Insulated Socks

emily

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

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

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

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

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

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

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

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I Have Raised My Children Right in The Most Important Area

I am sure that every parent questions how they have raised their children. I know I have.  I have not been strict enough in making them eat all of their vegetables and clean their rooms, (mainly because I don’t eat all of my vegetables and clean my room.) I know to some people  this is a major parenting faux pas.  However, I have raised my children right in the most important area…caring for others.

I volunteer with a recreational group of adults with and without disabilities.  We have a bowling league, then go out to dinner together, then have an activity at night, such as Bingo, Family Feud, or a visiting musician.  All of my children have come with me to this group,  starting with Francis when he was a baby and the group purchased a portable crib so I could bring him camping with us.  My children have been raised socializing with people with disabilities so that any disability is not knew to them.

Angel, my son with Dissociative Identity Disorder, has been my latest child to attend with me.  One of his “peeps” (as his calls his “parts’) I call the Game Show Host.  Angel is the one who calls the numbers for Bingo, or reads the questions for Family Feud.  He is hilariously similar to a game show host, right down to kissing the female “contestants” during a game of Family Feud. From the minute he starts an activity to the minute he finishes, we are all in stitches laughing.  Silly laughing.  Innocent laughing.  Heart beating fast with cheeks that hurt from laughing laughing. He is terrific, and I am so proud that he has learned to manage his disability in order to make others happy.

The happiest moment of all happened on Christmas Day.  All of our family festivities are on Christmas even, and Christmas Day is always a lazy one for us.  In fact, the children and I usually go to the movies.  Angel asked if it was okay if he invited a friend to the movies, and of course I said yes.  When we got there,  waiting for us expectantly, was Lisa, a 65 year old woman with a disability; the “friend” which he had invited.  She was dressed for Christmas…Christmas sweater, Santa Claus earrings, a Santa Hat and bright red lipstick. She was glowing as she hugged us all.  It seems that she has no family and had sat in her apartment alone for Christmas Eve.  Somehow Angel knew this, prompting his request that she come with us on Christmas Day.

We all laughed at the funny movie, and enjoyed a large popcorn, (mmmmmmm…movie theater fake butter popcorn!)  After the movie, we went out to a Chinese restaurant for dinner. (Duh!  Chinese restaurants are open…)  We had a lively conversation about anything and everything funny, and she beamed the whole time.  When we left her outside at her car to go home, she burst into tears.  She thanked us profusely. She said she was so lonely at Christmas, when everyone else had a family, that she had contemplated suicide because she had no one.  She said this was her best Christmas EVER!  Try as I might not to, tears slid down my cheek also.  Tears of sympathy for her and of pride for my son…a son who is seriously disabled himself, but who was still able to find the ability to care deeply for the feelings of this wonderful, lonely woman.

Yes, I have raised him right…

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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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A Christmas Gift from Above


We adopted Dinora from Guatemala at the age of 6 weeks, and I was so thrilled to have a daughter!!!  She came with a variety of diseases common in s 3rd World Country, scabies, intestinal parasites and malnutrition.  But we loved her and fed her and she blossomed into an adorable baby with big black eyes and shiny black hair.

At the age of six months, it became apparent that Dinora was deaf.  She had not yet started to babble like other babies her age, but she also did not turn to her name, or looked at the dog when she barked, or seem to notice the footsteps of me coming into her bedroom.  She would be laying there awake when I walked in, (and, believe me, I am not light on my fight.)  When she finally would see me, she would startle.  She had not heard me.  The day I knew it for sure was a day she was sitting next to me on the floor while I was doing the dishes.  I accidentally dropped a huge lobster pot I was cleaning and it made a horrendous clang on the floor.  Dinora happily sat there playing, her back to the pan.  She did not startle.  She did not cry.  She did not hear it.

We then made the rounds of the doctors.  She flunked regular hearing tests, and had a brain stem evoked response test.  Her brain did not respond up to 90 decibels.  The doctor informed me that she was severely hearing impaired and that we would try hearing aids to maximize her hearing, although they would not be strong enough for her to hear normally.  They took the impressions for her ear molds.

That evening, our family went for a pre-Christmas visit to a shrine beautifully decorated with Christmas lights.  I was feeling sorry for myself.  I had a two year old son who was legally blind, and now I had an infant daughter who was deaf.

There was a statue of Our Lady of Lourdes surrounded by prayer water and many large candles.  There was also a large display of crutches and wheelchairs of people who had been healed by her.  I helped my son, Francis, who was 2 1/2 years old, light a candle. Because it was almost Christmas, and the only candles he had seen were on a birthday cake, he merrily sang “Happy Birthday Dear Jesus”.  I remember saying a non-de-script prayer, still upset that Dinora was deaf.  I still thanked God,  but was not quite as enthusiastic as usual.

The next morning, the dog barked and Dinora woke up!  I thought it was a coincidence until I started to walk into her room and she turned to smile at me. She had heard my footsteps!  I started talking to her and she started babbling back.  Only a day earlier she had been fitted with ear molds for hearing aids!  I excitedly called the doctor, who agreed to see her that day.  Her hearing was tested and it was normal!  Neither I nor the doctor could believe it.  He said in his 29 years as an ear doctor he had never seen anything like it.  He told me that it had to be an “Christmas miracle from Above”.  The visit the night before to the shrine came to mind.  A miracle HAD occurred, and I was  embarrassed because I had not thanked God more enthusiastically the night before. He had granted me a miracle even though I did not ask for one.

Dinora is now 28 years old and has had perfect hearing ever since that day! And I have lived life with a peaceful,generous heart because I know, without any doubt, that God is with me.

book-cover.jpg

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A Whole New Meaning to “Swimming with the Fishes”

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

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

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

 

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

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ADHD, adopted, adoption, amazing, anxiety, Children, children who are deaf, deaf, deaf children, disability, Disabled children, Discovery Cove, family, foster care, foster care and adoption, funny, hearing impaired, humor, humorous, inspirational, kids, mentally ill, news, parenting, psychology, PTSD, swimming, trauma, water park

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I KNOW there is a heaven.

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

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

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

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

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

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

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

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

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

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

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

Category:

angel, angels, child deaf, child deafness, children with disabilities, dead, deaf, deaf/blind, disabilities, disability, disabled, fishing, hospital, inspiration, life, loss, mentally ill, near death, news, Uncategorized

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A Whole New Meaning to Swimming With the Fishes

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

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

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

Category:

ADHD, adopted children, adoption, anxiety disorder, child, Children, children who are deaf, children with disabilities, deaf, deaf children, disability, disabled, Disabled children, families, family, foster care and adoption, fun, happines, happiness through adversity, happy, happy parenting, hearing impaired, hope, humor, inspirational, inspiring, joy, kids, mental health, news, optimism, optimistic, optimistic parenting, overcoming, positive thinking, PTSD, thankful, trauma, vacation

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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!

Category:

ADHD, anxiety disorder, Aspergers, children who are deaf, children with disabilities, disabled sibling, dissociative identity disorder, foster care and adoption, happy parenting, joy of parenting, joys of parenting, mental health, multiple personality disorder, obsessive compulsive disorder, optimistic parenting, parenting and remaining sane, sibling with disability, Uncategorized, visually impaired

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