Archive for the ‘disabled sibling’ Category

Angels Among Us

First blogged January, 2010

My mother passed away several months ago and it has taken me this long to write about it.  She was the most wonderful mother in the whole world, (and I am not just saying that because that is what one is expected to say about their deceased mother.)  In addition to being kind and loving, she was also very spiritual.

I remember when I was four years old and we lived in Opalaka, Florida, right behind the Hialeah Race Track.  We had a cement swimming pool in the backyard which my father built, and next to it was a palm tree my mother had planted crooked so it was growing sideways.  I had a green parakeet whose name I certainly don’t remember, and I loved watching Howdy Doody and Captain Kangaroo on our little black and white tv with the rabbit ears antenna.  My brother was born one day in March, and life suddenly changed for our family.  My brother was born with serious disabilities due to Rubella Syndrome, (supposedly my mother had been exposed to someone with German Measles.)  With a cleft palate, he could not nurse or drink from a bottle, so he was fed by a large eye dropper. He could not such on a pacifier and he cried constantly.  He was blind and deaf and was obviously going to be severely developmentally delayed. My joyful childhood was suddenly overshadowed by a sadness of which I had never seen from my mother.  I would witness her throw herself across her bed and sob. A deep sadness enveloped our family. I looked at my little brother, who looked so innocent and little to cause such a fuss.

One day, when the sun was shining brightly and Curtis was asleep, my mother called to me to come sit in the rocking chair with her.  She squeezed me and held onto me tightly, rocking  and crying.  It was a different kind of crying, though.  A happy cry, if I could describe it as such.  From that day on, the gloom lifted from our house and I went back to living my happy childhood with my new baby brother.

Many years later, when I was a young teenager, my mother shared her experience of what happened to her that very day.  The doctors had been encouraging her to put my brother “away”, institutionalize him as was the custom in those days. “Forget about him,” they said, “You can have another child.”  She could not bear to make the thought of doing this.  Then, on that sunny day while rocking in her chair, she told me she was visited by an Angel, a beautiful, bright white Angel.  She told me she could feel the weight of the Angel’s hand on her shoulder, reassuring her that everything was going to be okay.  Although the Angel did not speak, she knew what the message was.  She did not have to worry anymore, her son would be fine, and he was.  He wasn’t fine in that he suddenly became perfectly healthy, but he was fine in that he has led a happy, fulfilling life. Clearly, she had been touched by something spiritual on that day to turn her torrents of tears into smiles of joy over her new baby.

Several years later, while camping high in the mountains, my mother woke up from her sleep and sat up in her sleeping bag.  She was joyous!  She told me she had been to see God, whom she described as a bright and beautiful. She said it felt real, not like a dream at all.  She was confused as to the experience because it seemed as though she was there to help a friend pass over into heaven.  She did not understand because of course her friend was healthy.  It was not until we returned home from vacation that she learned that this friend had died from a brain aneurysm on that very night at that very time.

My mother lived a life of  great happiness and contentment, always seeing the good in people.  Near the end, right before she died, I stayed with her 24 hours a day.  When we knew death was near, the nurses let me lie in bed with her and she passed away in my arms.  I don’t know what I expected when she died.  No…that’s not true…I expected to see some of what she had experienced!  I expected to see her pass into heaven!  I expected there to be some reaction from her body, some knowledge that her lifetime of spirituality would somehow, through osmosis, pass through to me.  But there was nothing.  She just stopped breathing. And there was nothing.

It took me a while to accept her death, and I became angry that there was no sign from God that she was with him.  Realistically I knew this was silly, but I was hugely disappointed.

Christmas time came soon afterwards.  As the parent of 5 children, I had this habit when the children were younger of taking a picture of their sleeping faces on Christmas eve.  As they aged, they hated the existence of these pictures!  (They were usually sucking on a “binky” at the time and girlfriends and boyfriends who saw the pictures in old photo albums would always go “Awwwwwwwwwwww, how CUTE,” the most mortifying thing that could happen to a teenage macho boy!)  This Christmas eve, filled with nostalgia, emptiness and sadness,  I again went into each of their bedrooms and gazed at their sleeping faces.  I was suddenly filled with a great sense of purpose and contentment, much like the type of contentment my mother might have felt when she felt the Angel’s hand upon her shoulder.  These were MY Angels.  These were my children who had endured so much when younger, either with their disabilities or with indescribable child abuse. They have not only survived, but they have THRIVED.  They are happy and loving and successful and they have bright futures as adults.  This is miraculous to me!

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!

Dinosaurs, Diet Coke, and Driving ‘Round in Circles

Yesterday was my brother’s birthday, so as treat, I took him on a trip to the Museum of Science.  My brother turned 51 years old, (while I am not admitting my age, I can’t deny that I am older.)  For those new to my blog, Curtis is legally blind, profoundly deaf, and severely developmentally delayed.  He can also be a joy to be around!  He is fun loving and enjoys just about anything.

My son Angel came with me on this adventure.  I picked Curtis up in the afternoon and he was so excited about the trip that he actually came dancing out of his group home, wearing a non-stop grin that was contagious.  We drove to suburban area of the city where the museum is with the plan to take the Metro into the city the next morning.  Before we went to the hotel, we stopped at a mall for dinner. Curtis’ LOVES malls, especially the food court, where we all had our choice for dinner.  After eating, Curtis wanted to walk around the mall independently.  I gave him $20 to spend and agreed we could meet back at the food court in an hour.  Off he happily went, thinking he was alone.  All the while, Angel played “spy” and followed him.  He thought he was on his own, and we didn’t want to spoil that illusion.  Off he went to, predictably, get a diet coke.  He pointed to the diet coke sign and handed the cashier his $20 bill.  She handed him his soda and his change, which he attempted to put in his pocket, (with half of it falling out on the floor.)  As he turned away to sit at a table, Angel scooped down and picked up his change to give back to him later.  Angel sat a few tables away so he could keep an eye on Curtis.  After finishing his soda, Curtis was up and moving…with his nephew as a tailgater.  Curtis then started his quest to fine every single elevator in the mall.  He knows that stores like Macy’s, JC Penney’s, Sears. and Lord & Taylor have elevators and he has the nose to sniff them all out.  In his mind, the elevators are transporters, taking him to level of the space station on Star Trek.  He has a mission to complete, to find every elevator in the mall, and after he completes his mission he can get another diet coke.

After the mall, we went to the hotel and checked in.  Curtis was so excited that he didn’t sleep well.  Every hour, ON the hour, he woke me up to see if it is time to to get up. (He learned this hourly ritual from my mother, who used to beg him to let her sleep “just one more hour”.)  I awoke at 7:30 to see him wide awake in the next bed, waiting for 8:00 am so he could wake me up and ask me if it is time to get up!  I moved to get out of bed and my movement announced that it is time to get up.  Curtis jumped up happily. He had all of his clothes on for the day. (He must have dressed during the night.)

After a quick breakfast of yogurt and bananas that I had brought, we drove the car to the parking garage for the Metro.  This happens to be his favorite parking garage in the whole world:  it has a spiral driveway all the way to the top.  As we drove, we sang and sway back and forth.  “Around and around and around and around” all the way to the top floor.  We then made our way onto the subway, which he also loves.  He asked me where we were going, as I had kept it a surprise.  Having recently lost his hearing completely, he does not yet understand that he cannot hear, so the conversation goes something like this:

C: “Where are we going?”

Me: “To see the dinosaurs.’

C:  “The aquarium?”

Me:  “No, the DINOSAURS!”

C:  “The movies?”

ME:  “NO THE DINOSAURS!!!!”

C:  “You’re taking me back home?” he said as his body melted in disappointment.

ME:  “NO!!!  WE ARE GOING TO SEE THE DINOSAURS!!!”

Realizing I was not going to get anywhere with telling him, I grabbed a piece of paper and drew a large picture of what I think was a pretty good imitation of a dinosaur.  “Oh!” he said happily, “we’re going to see Fred Flintstone?”  I sigh and shook my head yes…

I am the type of person who can sleep anywhere, any time.  Exhausted after being woken up all night long, I curled out across 3 seats in the back of the subway car, and Angel and Curtis sat across from me. It is about an hour’s ride into the city and I asked Angel to wake me up when we got closer to the city and it started to get crowded.  I was sure people would NOT appreciate me taking up 3 seats.  I fell fast asleep.  I woke up only when Angel was tugging on my sleeve because we were at our stop.  I was MORTIFIED!  I looked like a homeless person! I have “bed head” and drool coming down the side of my mouth. The subway car is full of people, many people standing up.  “I told you to WAKE me,” I reprimanded him.  At least it sounded like I was scolding him for the sake of the people standing up.  Secretly, I was grateful I was able to get an hour’s sleep in.

We had to change from the Red Line to the Green Line.  The seats in the car we entered were completely full, so Angel and I each grabbed a vertical pole and Curtis grabbed the horizontal pole above him and was kind of hanging like a monkey.  Angel and I put our arms around his waist to steady him.  The car swayed back and forth and we swayed back and forth.  Curtis thought our fingers were tickling him on purpose, so he started to laugh.  Angel and I started to laugh, and pretty soon the 3 of us were laughing hysterically.  Several of the passengers offered their seats as they could tell our predicament was precarious.  “No, thank you,” I said, “We are the adventuresome type.”

When we get to the museum, Angel, true to his nature, went to check out the museum store.  (One of his female “peeps” is a shopaholic who believes in the “shop til you drop” motto.) Curtis, true to HIS nature, wanted to eat first.   It’s not so much that he wanted to eat as he wanted to get a soda.  He is obsessed with soda.  We went through the cafeteria line and he picked out macaroni and cheese and I picked out a chicken caesar salad.  With him hanging on my arm, we payed and I looked for a seat. It was very very crowded. I was trying to do sighted guide technique with him on one arm, carrying the tray with the other, and steering him towards the one empty table I saw all the way across the room.  He spotted the sign for Diet Coke.  He wouldn’t move, just pointed at the sign.  I tried to tell him that first we needed to get a seat, that I couldn’t possibly stop for soda with a tray full of food and him on my arm, but of course he couldn’t hear me.  He continues to point at the Diet Coke sign like ET pointed to home.  He kept trying to drag me closer to the soda machine and I pulled him towards the table. The tray of food was unbalanced, and I was afraid our $35 lunch was going to drop on the floor, or, worst yet, on top of the head of one of the many children in strollers nearby. Finally I won the tug of war and we reached the empty table where I plopped the tray down, grabbed the soda cups and headed with him back in the direction of his  beloved soda. His face immediately burst into a smile as he realized what we were doing.   He was a happy camper!

We spent the rest of the afternoon exploring the museum.  The dinosaurs were  big enough for him to see, and he really enjoyed them, although he did keep asking where Fred Flintstone was.  (The Flintstones were our favorite cartoon when we were growing up.  Every Friday night.  Channel 6.  8:00 pm.)  When we finished with the exhibits, Curtis bought another soda “for the ride home” .  He perked up again when we got to the parking garage and had to go “around and around and around and around” in the car to get out.

Bringing him back to the group home was uneventful.  When the staff asked how his weekend was, he answered “GREAT!  I had diet coke and we got to drive around and around in circles.”  He didn’t even mention the hotel or the mall or the subway or the dinosaurs.  The next time I take him, I think I’ll save the money and just park at the Metro parking garage and buy him all the diet cokes he wants.  It would sure save me money, (and anyone who has read my blog before KNOWS that I like to save money!)

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