For those who know me, you may be sure that I am referencing a new foster or adoptive child. Not this time! This time, my new daughter is my son, Francis’, new wife. She is wonderful and sweet and recently blew me away with the Mother’s Day Card she sent. Separate from my son’s, she sent a beautifully designed Papyrus’ Mother’s Day Card with 3-D flowers and a lot of sentiment. But the sentiment that was most important was what she wrote inside; “Thank you for being such a great mom and raising such a wonderful son!” Isn’t it thoughtful? I now officially have another “daughter” and she’s all grown up. I didn’t have to do a thing…
Posts tagged ‘blind’
Mother’s Day is a wonderful time to appreciate moms, step-moms, birth moms, adoptive moms, wanna be moms and women who love children. Bless you for making a difference in a child’s life! Don’t you get joy from seeing the joy in a laughing child, the shy smile of a child with twinkling eyes, and the serene look on their faces when they are sleeping? Ahhhhhh……..what sweet little rewards of being with a child…
Most of us know, however, that it is VERY difficult to be a mom and sometimes the REAL rewards are far apart….
When my son Steven was in nursery school, it was a real challenge because of his autistic and ADHD problems. He had been born addicted to cocaine and heroine and his nervous system was “messed up” (my professional diagnosis.) Bringing him was a real challenge as he would kick and scream and cry, yet I did it because he could not hide out safely at home for his entire life with me vacuuming around him. At first, he would spend most of the time in school hiding out in the “quiet tent”, playing with his plastic reptiles, sometimes soaking in the information from the teacher. Eventually, he sauntered out of his safe space to see what was going on. He did not join the other children, but he was with them…a huge improvement. Eventually, nursery school became normalized for him; part of his routine. He would come home with his little projects; a paper flower, a painted snake, a play dough alligator. I had learned not to make a “fuss” over these things, but to quietly tell him they were wonderful while his head dropped to his chest, eyes closed. (He was not a child who could tolerate excitement of any kind.) He survived two years in that classroom, and I wondered how he would act on “graduation day”, a celebration seemingly out of his tolerance level. All of the children stood there in their little paper graduation caps, tassels dangling in front of their noses so they had to keep blowing them away. All of the children except Steven. The children sang a song, and thanked their moms and generally wowed the crowd with their antics. All of the children except Steven. The children walked in a nice, straight line to get their nursery school diplomas; all except Steven. When all but one diploma had been handed out, the teacher walked over to where Steven was hiding under a chair, butt facing outwards. (If I had been smart, I would have sewed a smiley face on the butt of his pants, but, alas, I had been unrealistically hoping that he would join the other children in the graduation ceremony.) The teacher bent down with the document and Steven’s little hand reached out to grab it. He quickly pulled the diploma out of sight. Calm and cool under the seat, he had made it! Steven had graduated from nursery school without a tantrum, yelling or screaming. He graduated in the manner he felt most comfortable, but graduate he did! What a reward that was for me; I was a proud mother, indeed!
Diagnosed in elementary school with Dissociative Identity Disorder, Angel, has been very carefully placed in specialized classrooms. Although intelligent and able to do grade level work, he frequently changes “parts”, (his word for his alternate personalities.) His teachers and teacher aids, bless their souls, understand him well, and manage to educate him, even if it means repeating the same lesson because a different “part” was out that day, or giving his the test over because the “part” that studied for the test is not the “part” that took the test! He has a baby part which necessitates him to just “veg out” in a large mushroom chair. On those days, nothing was learned. His condition has been kept top secret and no unnecessary teachers or others in the school know about it. Fortunately, he has been living a very “normal” life. I have found one surprising benefit…he has a “Game Show Host” part. I work with a recreational group of adults with disabilities, and every now and then we play Bingo or Family Feud. Angel, as have all of my children, regularly comes with me. One day, he asked to be the moderator for Family Feud and his “performance” was beyond hilarious. Usually a reserved child with groups, all of a sudden he channeled Richard Dawson! He went down the rows of “contestants”, gave each of them a peck on the cheek, and, while holding their hands in his, asked their names and a little about themselves. The older women, who probably have not had much attention in their lives, giggled and smiled and blushed. Then, Angel read each question with gusto, and made a “ding” noise when they got it right, and a loud buzzer noise if they got it wrong. It was sooooooooooo funny because it was so out of character of the Angel that they knew. This group of adult with disabilities, many of whom live alone on a minimum income with this once a week outing their only time out of their houses, were laughing hysterically that evening. Ever since then, they look forward to Family Feud and “Gameshow Host” Angel! What a reward for me to see Angel’s give such joy to these wonderful people!
As a graduation present, my daughter, Dinora, and I took a trip back to her birth country in Guatemala. She had done fundraising to assist with the opening of a soup kitchen in Antigua, and we were there for “opening day”. We went shopping that morning, taking a little “putt putt” (2 wheeled open air taxi) into the village, giggling all the way as it bounced along. We bought flowers of all bright shapes and sizes, which stuck out of the putt putt on the way back, narrowly bopping passers by on the head. We spread the flowers out in front of the alter where a mass was to be said in honor of the opening of the facility. An overflowing crowd of people filled the make-shift pews, and it was a beautiful, emotional mass. Even though it was all in Spanish I seemed to understand every word, and I could certainly feel the emotion in the songs which the Indigenous Guatemalans sang. After mass, people lined up for the food in their brightly colored clothing. There was my daughter, a young adult, behind the counter, dark hair pulled back into a pony tail, serving food with a beaming smile on her face showing dimples I never knew she had, (or perhaps she had never smiled so brightly.) She was old enough and cared enough to give back something and help “her people” as she called them. I will never forget the sight of her…sweat on her brow, wiping her hands on her apron, making pleasant conversation in Spanish while smiling that amazing smile… How could that sight NOT be a reward for a mom after years of raising a difficult teen?
Raising Marie has been the most difficult because of her many serious challenges. When she came to us, she was street smart at the age of seven.(See post “All She did Was Scream and Say No! No! No!) She had no thought of danger and no social skills. Although this may sound silly, one of my concerns was the fact that she would litter. Get a drink; throw the bottle on the ground. Have a piece of gum; throw the wrapper on the ground. Popsicle; stick thrown in the grass. Repeatedly, I would have her pick it up and throw it away, explaining that we don’t litter in our family. Marie could not have cared less…she did not want to be in our family anyway… It took many months with us before she learned not to litter. That’s why it shocked me when we were at the mall one day and she casually flicked the paper from her straw onto the ground. My eyes widened, and just as I was about to ask her to pick it up, she bent down and picked it up, signing to me “I was just teasing you! I know we don’t litter in this family!” What a reward it was to hear her say that! Finally, she felt part of our family!
My most favorite reward I saved for last. For all of you parents, especially parents with children with disabilities, I will share that there has been no greater reward in my life than seeing my son, Francis, become a successful adult. Despite being legally blind, he has a college degree, is very successful in a job which he loves and through which he is benefitting others, and he recently married a great woman who not only loves him for the wonderful person that he is, but can also drive a car so he won’t have to take public transit to work any more! There IS no greater reward for a parent; to know that the problems, fun, hard work, love, difficulties and dispersed joys of childhood have come together in a positive way. My son has officially “made it” to adulthood. Now he can look forward to the rewards he will experience in raising his own children. Then I get the extra rewards of grandchildren!
To all of you mothers and others out there, Happy Mother’s Day! Beyond the handmade cards, the flowers, the breakfasts and dinners out, and the gifts of the day, so many more rewards await you. Sometimes you just have to be patient…
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/
I’m just returning from church. I go to an inspiring, welcoming church, which I love! Everyone is friendly, and we make a special effort to include people with disabilities. We have pew cut-outs throughout the church for people in wheelchairs. (After all, just because you are in a wheelchair does not mean you want to be relegated to the back row, or, even WORSE, the front row.) We have a sign language interpreter and large print materials for the church service. If a person who is totally blind attended, we would no doubt get the materials in Braille. People with developmental disabilities, as well as people with mental illnesses are welcomed with open arms. Having the children I do, it has been a God send (literally) for our family.
The congregation members help out during the service in many roles, and today I was helping to serve the Wine. The people serving communion stand on a step while serving the bread and wine. Learning from an earlier experience when I fell while trying to get a group together for a photo, I always firmly grip the hand rail while walking down the few steps. (Falling while taking a picture is understandable, but more care needs to be taken with the wine. I am sure it would stain the carpet terribly!) When offering the wine to the congregation members, I frequently have to bend over because I am tall and on a step, and they are often shorter. Today, after I bent over the first time, I noticed that my shirt parted from my body in the front, and everyone had a clear view down to my belly button. (Well, they COULD have seen my belly button if my big breasts had not gotten in the way.) I was mortified! While I do not embarrass easily, once I notice something askew, of course I have to fix it. So, I did the only thing I could do under the circumstances; I squatted for each person. Do you know how incredibly hard it is to hold a squat at one particular level and then move that squat up or down depending upon who was next? If I were athletic, it may have been easy. But I’m not… I felt like one of those baby crib toys, all scrunched up (squatting low) and then being pulled straight, (standing tall) and while music plays it slowly moves up to the low squat again.That’s the way I was today; up and down and up and down all to the beat of the choir’s music.
I will never wear that shirt to church again…
Link to my book
Link to the Readers Digest review of my book: http://www.rd.com/recommends/what-to-read-after-a-hurricane/
My son Francis is amazing! Although legally blind, he has led an incredibly successful life. I think one of the reasons he has done so well is because he was raised without having a disability. If that sounds odd, you have to define disability as not having the ability to do what one wants in order to lead a full and happy life. With proper modifications and technology, Francis has never been held back in any area of life.
Of course, we have chosen achievable goals when he was growing up. One of the many topics we tackled was how to fit sports into his life. Of course he could not play baseball or soccer, but he could be on the wrestling team and swim team. (He excelled and won championships in both areas.) The one sport that I worried about was his skiing. He learned at an early age to traverse the White Mountains in New Hampshire with a sighted guide skiing in front of him, usually his dad. This petrified me because I was afraid he was going to ski into a tree and die. The fact that he is still alive and kicking today is proof that he didn’t, but that did not lessen my motherly concerns.
When Francis went to college at Cambridge in England, he had the good fortune to make many friends with whom he could travel all over Europe. One day, I received a photo via e-mail, accompanied by the comment “Look, mom, no trees!” The photo was one of Francis in ski gear, standing at the top of a ski run in the Alps. The sun reflecting off his dark goggles was no match for the shining smile on his face. There were no trees to ski into because they were above the tree line. He was safe! And, most importantly for a mom, he cared enough to send me a picture to SHOW me that he was safe. The little cockles of my heart warmed at the thought…what a considerate son!
It wasn’t until a few months later that I saw the news of a large avalanche in that same area and three people were presumed dead. DEAD? I immediately remembered that beautiful picture of my thoughtful son, and I laughed. (Yes, I laughed.) That picture shows that my son does not have a disability because he had the same chance of dying as the skiers buried in the snow. He is truly successful!
Links to my book:
Link to the Readers Digest review of my book: http://www.rd.com/recommends/what-to-read-after-a-hurricane/
I work with a social/educational/recreational group for teens with disabilities. When first getting this group together at the beginning of the school year, I asked them what they wanted to do as part of our program. Every single one of them said they wanted to “help other people”. Here are students with a variety of disabilities and medical needs, and they wanted to help others! They were mature enough to look beyond their own problems to the problems of others.
Various suggestions were tossed about; opening a soup kitchen, visiting with the elderly in nursing homes, working at the local pet shelter, and so forth. I suggested the easiest thing to do would be something we could do as a group within our program. They chose making sandwiches for the homeless.
Every other Saturday we meet. Yesterday we had some social skills activities, some recreation, (does anyone remember the game Simon?), and then they all baked cookies and made sandwiches. As they were working, they chatted happily, teen music playing in the background. When one song came on, they all broke out into what I call “dancing like you are riding a horse”. (I am sure all teens will know what I am talking about, even if parents don’t.) As soon as the song stopped, they all went back to their sandwich making. It was hilarious!
They worked as a team and made 165 sandwiches and twelve dozen cookies. As they worked, they talked about who might get to eat them, what kind of bad luck may have fallen upon that person and so forth. They talked with much empathy, and not once during their conversation did they mention their own problems. They were caring about the problems of others.
After the sandwiches were made, I drove up to Traveler’s Aid, a local spot where the homeless hang out. The kids got out of the car to bring the sandwiches and cookies in. They helped each other. One girl in a wheelchair held a box of sandwiches on her lap while a girl who is blind held onto the wheelchair as her sighted guide. (Instead of a using a guide dog, she was using a guide wheelchair!) I stood back as they went into the building and delivered the goods. They were so proud. The large group of people milling about parted like the Red Sea, and left them easy access to the front desk where they would be dropping the food off. They walked and wheeled to the front desk which, fortunately, was wheelchair accessible. The crowd murmured appreciatively, politely, thankfully. The kids faces beamed as they turned around and came back to the van. They were no longer disabled, but capable of helping others. Suddenly, their problems were not as bad as the people who thanked them; people without shelter and food.
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…