I don’t travel very often, but when I need to book a hotel, I use Hotwire.com. They offer wonderful hotels at a low rate; hotels that have extra rooms that they need to fill up. The catch is, you do not know the name of the hotel, just the “type” of hotels that are included in each category. Hotwire has never disappointed me, as they have always provided quality hotels at a greatly discounted price. This past weekend, I was scheduled to do a presentation for a large parents conference held at Perkins School for the Blind, about a two hour drive for me. Because the conference was scheduled to begin at 8:30 am, and I would be reimbursed for my travel expenses, I contacted Hotwire to book a hotel room. The least expensive one listed was $69, which was a real bargain because hotels in and around the Boston area are very pricey. I booked it on line, and awaited the name of the hotel. It was not a brand name I had ever heard of, so Google checked it out for me. It was listed as an “elite, boutique hotel”, and the least expensive price listed on their website for a room was $180! Now, I am definitely NOT elite, and have never visited a boutique before, but for $69 I was going to give it my all! Upon driving up to the hotel’s front door, I learned that valet parking was mandatory. I relinquished my “Best Mom” fake jeweled key chain to the parking attendant, (pardon me…to the VALET.) Politely and without comment, he struggled as I do to climb up into the driver’s seat of my large van, and drove away in my 2002, dented, dirty, 15 passenger with a raised roof and wheelchair lift van. He parked it right between a Rolls and a Jaguar, and it looked like a large, dirty, cheap piece of coal between 2 diamonds. Even my car was going to get a new experience! The lobby was gorgeous, as are so many in expensive hotels. Lots of fresh flowers, a water fountain cascaded down the wall, and a lovely tray of fresh baked chocolate chip cookies. Checking in was a pleasurable experience with a tuxedo clad clerk, who offered me a cookie. (I would have taken one anyway, so the fact that he offered was a bonus, although I would have preferred he offered me 10.) My 6th floor room, with the curtains open, had a breathtaking view of the Boston skyline at night. The room itself was definitely “boutique”… furniture with trim lines, a wood floor with plush, beautifully designed, throw rugs that added an elegant, clean look to the room. Because it was late in the day and I was tired, I put on my jammies, brushed my teeth, and climbed under the luxurious, fragrant, CLEAN sheets and comforter. I honestly felt as though I were laying on a cloud. In addition, there were four different types of pillows on the bed so that I could choose the one which would best facilitate a good night’s sleep. Ahhhhhh…..sleep….on a cloud overlooking the Boston skyline… The modern bathroom had a very large walk-in shower with huge round shower heads pointed in all directions. In the morning I took a shower, or, should I say, I EXPERIENCED a shower. It was all a new thing for me; hot water flowing over my body from all different angles. Do people really LIVE like that? The shampoo was ultra fragrant, with a conditioner and body wash that had complementary fragrances. (Think orchids, strawberries and oranges…) I felt like a fruit orchard, and it was a very unique feeling! (I guess that is what makes the hotel “boutique”.) As I finished showering and came through the frosted glass door of the shower, I shocked myself when I saw another dripping wet, old, fat, ugly naked woman coming towards me in the room. I screamed. I shuddered. I looked closer. It was ME. Reflected in the mirrored wall just outside the bathroom. Although breathing a sigh of relief, I was also filled with horror at the image in front of me. I don’t know about you, but I NEVER look at myself naked in a full mirror. Any illusions I may have had about my looks were proven false in that moment. Oh, well…it’s a good thing I feel beautiful on the INSIDE… After getting over my shock, I dressed and made myself a nice cup of tea with the provided Keurig. Now THAT is my idea of a boutique hotel…one that provides fresh tea to my liking. Now, if only I had a few of those chocolate chip cookies from downstairs… ************************ I would love to come and speak for your group or at your conference. I would do it for free, but would need the price of travel. For functions in the North East, that would be only gas money. 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/
Archive for the ‘childhood’ Category
The six-week-old infant boy, with gorgeous blue sparkling eyes and blonde hair does not make eye contact with his mother who is trying to nurse him because he cannot see. The five-month-old infant girl from Guatemala with happy brown eyes smiles easily, but cannot hear the voice of her mother. The six-year-old boy with dark skin and gorgeous black curls hides behind a large, fake plant rather than join his family at the table for Christmas dinner. The Hispanic boy’s joyful smile at his mother turns to a smoldering stare, holding the darkness within him. The seven-year-old girl with beautiful blue eyes and blonde hair, does not love her mother, and tells her so every chance she gets. She tells her in American Sign Language.
Are these snapshots of five troubled families?
No, these are the children of my family. My name is Linda Petersen. My husband RAYMOND and I have five children with five different disabilities. Our first son Francis was born blind and we later found that I carried the same gene that had left my brother blind, deaf and multiply disabled. So we adopted our second child, Dinora. Declared healthy, she turned out to be malnourished and deaf and suffering from attention deficit, post traumatic stress and anxiety disorders.
Still we coped. I worked part time and drove my pair to numerous medical and school appointments, while Raymond pitched in admirably on housework and cooking.
But when Francis and Dinora became teenagers and my schedule eased, I ached to do more. Raising children was great fun and I had the time, emotions and ability to give. Raymond adored children, so our only dilemma was how to add to our family.
Since we lacked the money to adopt again, we became foster parents and requested only infants. Caring for and watching babies grow and develop has been an awesome and humbling experience. Although most were returned to their parents or adopted by relatives, we wound up adopting three of these children ourselves.
Each, it turned out, had serious disabilities as well. As they grew, horror stories emerged from their family backgrounds: beatings, sexual abuse, severe neglect, cocaine addiction, and neurological damage.
Our family is a walking dictionary of medical conditions and psychological syndromes, some so severe that you would never expect that child to live a normal life. Yet our children have survived and thrived.
I hope to share with others the approach that has worked for us. Acceptance and humor ease life’s burdens. Patience and understanding trump even the greatest disability.
After ranting and raving about my lovely life raising 5 kiddos with disabilities, the book has finally been published as an e-book; “The Apple Tree: Raising 5 Kids with Disabilities and Remaining Sane”, on Amazon.com, I-Book, and Barnes and Noble.
The Apple Tree; Raising 5 Kids with Disabilities and Remaining Sane
Please consider purchasing one. It’s only $8.99!!!
Most people can look up and see a tree. To a child who is blind or visually impaired, their concept of a tree is the bark they can feel. Their concept of a tree is that it is” rough”. If they have some vision, they can tell that a tree is brown at its trunk, but “a blob of green” above the trunk. They could grow up and their whole lives not know what a tree “looks” like. Expanding such basic knowledge of their world is called expanding the core curriculum. It consists of concepts that are not taught in school, but are still important lessons for that child to learn in order to grow up as an educated adult who is blind.
One topic covered by the nine students, ages six through thirteen, at an April vacation program, was the concept of trees and their differences. During a nature walk, students found that some trees were so small they could fit their hand around the trunk. Some trees were so large that it took all nine students holding hands to encircle the trunk. Some trunks were very rough, with deep groves, and some were smooth, with little lines barely traceable by their little fingers.
They learned that evergreen trees stay green all year, and they giggled as they carefully touched the sharp needles. They never knew that trees could be so prickly! Under the tree, they found the pinecones from which a new tree may grow.
They learned that oak trees, in the spring, have no leaves. They closely examined the branches of an oak with a few dead leaves still attached, carefully feeling them and making the connection with the leaves they see on the ground in the autumn. Acorns which were still attached to the tree branch were felt with much enthusiasm. They had collected acorns from the ground underneath the tree, but to actually see it attached seemed to be a surprise. They felt the new buds on the ends of the small branches, buds which would soon bloom into leaves.
Students learned about flowering trees, in full bloom during their springtime visit. Most students were amazed that a tree could have flowers. In their minds, trees and flowers were two entirely different things. But there they were; pink blossoms on the end of a cherry blossom tree branch, gentle, sweet smelling little flowers.
As they were feeling and looking at the trees up close, students were in awe. So many different types of trees! And they would not describe a single one of them as “rough” because they were finally able to look beyond the bark.
My job is a social worker for children who are blind includes coordinating both a summer and winter program for the children with whom we work. Last winter we went to an indoor water park during February vacation with about twenty-five children who are blind and “legally blind”. The children had a wonderful time playing in the water park, on the slides, in the wave runner surfing area, and in the pool, as well as participate in the regular activities that we plan, such as playing bingo and dancing. Getting together is a huge big deal for these children who are mainstreamed into regular classrooms in their neighborhood public schools where they might not ever see another student with a vision impairment. I began this program twenty two years ago when my oldest son, who is legally blind, was six years old.
The winter program was a huge success! Most notably for me, it was the first time my fourteen year old daughter who is profoundly deaf wanted to help out a group of younger girls who are blind. Each girl had their own staff person who amicably allowed Marie to join their group to help with the little girls. Despite the fact that she normally communicates in American Sign Language, she somehow managed to be very sociable and get along well with everyone. Having normally been obsessed with surfing at the wave runner attraction, and being a somewhat selfish young lady, I had expected she would help for a little while, but spend most of her time surfing. However, I was pleasantly amazed that she did not choose her own activity, but spent all of her time in the water park playing with the little girls, helping them on the slides, holding their hands to guide them around the park, showing them where the food was on their plates, and so forth. She was having a grand time, and the girls all seemed to adore her.
On the last night of this program. Marie was seated at a booth with two of the girls and their staff. One of the girls all of a sudden started waving her hands wildly in the air. Prone to seizures, her staff person asked her if she was okay. She said of COURSE she was okay, she was just TALKING to Marie!! The laughter started at their table and soon circled around the room as everyone realized what she had said…she was signing to her, of course!!!!
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…
Yesterday my husband, in a good mood, came into the kitchen, swooped me backwards, and gave me a passionate kiss. When we had finished, I noticed my 13 year old adopted daughter standing there, mouth gaping open, eyes wide, with a shocked look on her face. “What was THAT????’ she asked (in American Sign Language.) “A kiss,” I told her. “No, no”, she signed, “a kiss is a little peck on the lips” she said as she came over and demonstrated one on the dog. “That is the way you kiss when you really love someone, your husband” I said. “WOW! How did you LEARN that? Can you show ME!?!?!” she signed. “You don’t learn it, you just feel it. It is natural when you love someone,” I explained to her. “I’m going to wait until I’m 17 to do that,” she signed back, and I said a silent prayer to myself that I should be so lucky for her to wait that long! I laughed inwardly at her innocence, this worldly child who knew the mechanics of sex more than anyone her age should have to know, (the reason of which is a discussion better delegated to a more serious blog entry.) But I doubt she ever saw anyone in love before, and she definitely had never seen anyone kiss passionately, which really surprised me. The more I thought about it, though, I realized she hadn’t been exposed to it in her young life and the only other way she might know would be from watching television. Because of her deafness, she has a low reading level and is not able to understand the captioning enough to get interested in a romantic story or one of the more mature television shows which are all over the television today. Her favorite tv station is the Animal Planet where great stories are told and no captioning is needed. She knows all about the life cycles of animals, insects and reptiles, including their different mating rituals, but, as preparation for real life, I’m sure she never saw alligators kiss like that!
I like to write breezy, optimistic posts. I am generally a breezy, optimistic person. However, I also write this blog for my own stress relief. so readers are going to have to bear with me for this one.
Marie had a bad day at school yesterday. (Well, to say “bad day” is akin to saying wave when it was really a tsunami.) Marie had been doing very well this past year and we had not an ambulance run for a post traumatic stress episode since last February! She still had her moments of outbursts in school for which she was gently placed in “the quiet room”, but she had always managed to calm herself down without a need for restraining or other interventions. However, springtime is the anniversary of her removal from her birth mom. Also, we had spent the past few months finally discussing the abuse that had happened 5 years ago, including going to the police station and filing a report. (A warrant for the arrest of one of the men who had abused her had been issued, but the man had fled the country.)
Although we had always known that Marie was abused, it was only recently that she has felt comfortable discussing the details. Whether she only recently remembered them, or whether she only recently felt confident enough to tell is in question. Her pediatrician recently referred us to a center which has a wonderful program for individuals with disabilities and children who have been sexually abused, but I had not contacted them yet as I was waiting for a copy of the police report, (a requirement for service.) I fear my negligence at doing so right away contributed to Marie’s PTSD episode yesterday.
By the time I arrived at the school, she had been actively violent and dissociative for over an hour. She was not being restrained, but was in the “quiet room”, not so quietly destroying it. The staff watched from the doorway as she ripped tape off the blackboard (which had been taped with foam so as not to be harmful during a tantrum.) She threw the tape, then pieces of the foam and the blackboard, at the doorway. When she is like this, she has super human strength and could level any person with one swoop of her hand, which is why the staff was wisely standing in the doorway. I stepped into the room to try to calm her, but she did not recognize me. She came at me wild eyed, swinging and spitting. (Think Linda Blair in “The Exorcist.”) I retreated as her violence escalated, at which point 911 was called. By the time the police, ambulance and firemen arrived she had wrapped the masking tape tightly around her wrists to stop her circulation and had gone over and ripped the radiator cover off the wall. It took 8 men to subdue her, and several of them were kicked, bitten and punched. They had great concern because she was spitting at them, as blood borne pathogens are the scourge of all medical personnel. (HIV? Hepatitis?) Even as I was warning them not to, they tried to put a mask on her face. She has been through this before, and she is an expert at biting down on the mask, chewing on it and has at least one time, almost swallowed it. As she began to do so, they replaced it with a towel over her face. They used towels to restrain her arms and legs which were swinging with great force in all directions. She was then placed on the ambulance stretcher and whisked off to the ambulance. All this time, she was screeching with a guttural sound that one would associate with the depths of hell.
They asked me to follow the ambulance to the hospital, which felt surreal, like a high speed video game. It’s a good thing I have nerves of steel because we drove at high speeds through the streets bypassing red lights. At one red light, a car was in the middle of the road and the ambulance went around it on the left while I went around it on the right, just like you see on those high speed chases in movies. But it was me, a little old 55 year overweight mom, in the driver’s seat! If it weren’t for such a serious situation, it almost would have been fun.
At the hospital, it was routine. They knew her there. First it was the transfer from the ambulance stretcher onto the emergency room stretcher. This move takes a great precision as the hospital restraints had to be transferred onto her arms and legs. If this was not done quickly, an arm or a leg would become loose and would go flying for a swift, hard kick or hit. One worker did not duck and he was kicked on the side of the head. Once on the hospital stretcher, everyone backed away as the towel was removed from her face, and her spitting began anew. The security guards donned masks with clear shields on them, making it look more like a science fiction movie. She was thrashing about, banging her head on the side of the stretcher. They put a padding on the side, which she quickly grabbed onto with her mouth and began to bite through.
Fortunately, she was evaluated quickly due to the distress she was in. She was given a shot of a tranquilizer, and her fighting and spitting quieted. The wild look was gone from her eyes. She calmed down, blinked and huge tears began to roll down her cheeks. She looked around and was confused as to where she was. Her eyes pleaded with me to ask the doctor unhook the restraints as she can only talk with her hands because she is deaf. Because she was calm, they unhooked one hand so she was able to finger spell what she wanted. She spelled out p-o-s-i-c-l-e! (She had obviously been to this emergency room several times before and she knew what they had to offer.) She signed her throat hurt but she didn’t know why. (Maybe from all the SCREAMING she had done for the last hour?)
She was calm and her restraints were completely removed. A psychiatrist was to evaluate her, and I asked for a sign language interpreter. Five hours later she was evaluated. She proceeded to tell the doctor that in school she has a hard time controlling her anger inside and when she gets angry over the least little thing she cannot control the anger and she explodes. He asked why she was so angry and she thought about it a minute before she proceeded to tell him the story of how she was angry at her birth mom because she let men have sex with her, and she was angry at the men for hurting her. This was the interpreter’s first time on the job, and she expertly interpreted all of the sordid details. When Emily had finished with the story and the doctor left the room, the interpreter stepped outside the room. She was clearly shaken, trying to hold back tears. “I didn’t realize how difficult it would be to do this!” she said. I reassured her that we use an interpreter often and this is the first time this difficult subject has come up. Next time maybe she’ll interpret for a wedding or a school play, definitely something less difficult.
Because PTSD can happen at any time, it is unpredictable. The doctor did not recommend hospitalization. (Marie LOVES when she is hospitalized…all the popsicles she can eat, doesn’t have to go to school or do chores, and everyone dotes on her because she is so adorable. What’s not to like?) We did discuss getting her into counseling with the center for abuse, and a referral was made. Because there are no counselors or social workers in our area trained in American Sign Language, Marie will have to have an interpreter for counseling sessions, not the preferable manner, but for now it is the only way.
Marie was in good spirits when we left the hospital. She was skipping and smiling. She had no memory of what had happened before she came to the hospital, and I was glad of that. I have that memory, though, and I get flashbacks of the screaming and the cold, wild eyes. Her PTSD has caused my PTSD!