My teenager talks on the phone…

I am so excited!!!!  As I sit here at the computer my teenage daughter is chatting with her friends.  They’ve talked about Justin Bieber, what they’re going to do after school, what color they are going to do their nails next, and the regular banter of teenagers.  It is music to this mother’s ears because it is the first time she has ever been able to talk to her friends.  Of course, she has her cell phone and she is able to text her friends, but this this the first time I can see the giggles and silly faces teenagers make when they are happy. My daughter is deaf, and she has just learned how to use the Sorenson Video phone. She can now see her friends and they can talk with American Sign Language!  At last, I have a “normal” teenage daughter!!!!

A Week At Camp, the Blind Leading the Blind

I have just unpacked upteen boxes and suitcases from a week of running a summer camp for children who are blind.  Lest you think this past week was a chore, it was not. It was a week of pure joy.  A week of watching months of work come to fruition. A week of watching young souls meet new friends, try new things, and, in some cases, mature beyond belief. Children whose parents thought they would be homesick and crying to come home at night, instead spent the night playing games with other children.  Sure, the children are blind and severely visually impaired, but they are still children.  The lure of learning how to play blackjack on Braille cards, or chess on an adapted chessboard, or Connect Four, Braille Uno, or Monopoly in large print and Braille, won out over going home to their lonesome bedrooms at home.  Who can argue with fun?

This was my 23rd year doing the camp. I started it when my son, Francis, was five years old.  In our state, as in most others, children who are blind or visually impaired go to their neighborhood public schools with accommodations made so they can be educated with their fully sighted peers.  It is a wonderful concept, except for the fact that the child may often feel alone.  I started this camp so the children who are blind can get together with other children with the same disability and learn that they are not alone.  There are many other children just like them!

We have been fortunate to rent a wheelchair accessible retreat center. (Some children who are blind are also mobility impaired.)  Although I call it “camp”, it has bedrooms with 4 beds, (linens and all,) each with its own bathroom (with hot water!)  There is air conditioning, carpeted floors, and a great room where all meals are cooked by a full kitchen staff.  There is also plenty of room for camp activities.  I know it does not sound like your typical “camp”, but it is as close to nature as this little old social worker cares to get.

The children range in age from six to eighteen, although theoretically the campers top age is 13.  Any camper who has shown active participation in the camp, we hire as a junior counselor when they reach the age of 14. I learned this “technique” to deal with the teenagers years ago when we found ourselves with a large group of teen campers who rebelled against the camp activities and wanted to just hang out.  They would sit back and not want to participate in the dance, the games, the swimming and so forth, effectively using the time just to socialize.  I am not saying that socializing is a bad thing; in fact it is a much needed activity for these teens, but just not the purpose of our camp. So, we hire them to work with the younger children.  Our state Department of Vocational Rehabilitation actually pays us to use this experience as a job training opportunity.  For those counselors who are totally blind, we provide a sighted guide for them, but they are expected to do the actual work.  Is there anything more valuable than seeing a fifteen year old girl, totally blind from birth, working with a six year old girl who is also totally blind? The campers learn that despite their disability, they have valuable skills, and they learn these skills from the junior counselors.  We have had many junior counselors go on to be head counselors, and also onto college into teaching and human service positions based on their initial experience at camp.  (We also have one young man who has become a certified EMT after working at our camp as our Medic for 8 years.) Because these young people are working at camp, they are learning valuable work skills and building a resume, and I have been asked to write many recommendations for these hard working, eager to learn, teenagers.

The activities at the camp itself are modified for children with vision impairments.  Besides the games mentioned previously, we have many group activities.  My favorites are our “Olympic” events.  The groups generally include one head counselor, one junior counselor and four campers, make up the “Olympic teams”.  We have many activities over the week that enhance the group dynamic, but also teach the children that winning isn’t everything.  While the teams make up the audience, one team performs the event while the others cheer them on.  It isn’t winning or losing that is the goal; it is the camaraderie, good sportsmanship, and support of others that counts.  Events this year included the ball in the basket toss.  A beeper is put in a laundry basket, and teams are asked to throw the balls in.  The team that gets the most balls in wins.  Easy enough one would think.  But to make it a little bit harder, and because some of the children have some limited vision, we blindfold everyone. Not quite so easy.  We also had a shooting event.  Water guns.  Turkey roaster pan hanging from a tree. Me banging on the pan so they can tell where the pan is located.  Lots of fun, but the most fun was seeing where on my body they would shoot me when they missed the turkey pan! Unfortunately, they did not get any extra points for shooting the camp director!  Another very humorous event was a twist on the old standby game…the dressing game.  In a laundry basket there are a pair of pants, a man’s long sleeve dress shirt, a tie and a hot.  The “athlete” is supposed to put the clothes on and race down to the person at the other end of the line, who is wildly calling their name so they can find them.  Getting to the person is the easy part, putting the clothes on, blindfolded, is the hard part, especially when the person before you has left one of the sleeves in the shirt inside out.  Or trying to put the tie on after the hat was on their head.  Or holding up the ill fitting pants while they ran. In this game, none of the audience could cheer the athlete on because they were laughing so hard.  We also had a pizza box challenge.  For this Olympic event, I put up a yellow plastic rope tied to a chair where the event started.  Using a talking caution cone which would sound an alarm when you came near it, the athletes could find their way along the rope and turn at the caution cone, heading back to the start.  Carrying a pizza box.  Then 2 pizza boxes, then 3, then 4, then 5.  The team that completed it in the shortest amount of time won the event.  There were several other events to the Olympics with the purpose of having fun and fostering a team spirit.  Of course, when the awards ceremony came, each of the teams had won at least one event, so everyone won a medal for their efforts, (a Brailled, bright, changing color medal with the name of the Olympics in large print.)

Another activity we do at camp, of course, is arts and crafts.  Everyone painted frames.  EVERYONE painted frames.  You do not have to be sighted to paint.  After they were painted, we had a wide variety of doo dads with which they could decorate their frames.  Tactile, three-dimensional stickers which were easy for everyone to use.  My favorite was the young camper who painted her frame like a flower and then stuck bees all around it.  Although the children may be blind, they still like to show off the group picture that will be placed in their frames.  A picture of all of their friends.  Lots of friends.  All who have vision problems similar to theirs.

We have also always done a group art project, one that hangs in our office at work and two that we give away to important state administrators who support us in this camp endeavor.  This year, we did rainbows.  The colors of the rainbow were outlined in puffy paint so that the campers could tell where one color ended and another began.  Then, everyone put their fingerprints to fill in the colors.  Hundreds of big and little fingerprints.  After the fingerprints had dried, we then had them glue on tactile items of the same color.  For example, for the red color I had real little birds, (well, not REAL little birds, but little birds about 1/3 inch high,) apples, hearts, gemstones, (fake, of course) and so forth.  For the orange color we had plastic oranges, flowers cut from a branch of artificial flowers, glitter orange stars, and so forth. This activity not only creates a beautiful 3 dimensional rainbow, but it also helps the campers with color identification.  Many of them did not know that a heart was red or that apples could be red, green or yellow.  (I had a variety of colors of apples just to demonstrate the point.) Someone glued clouds from pillow material, and someone put down a tissue sun.  It came out incredibly awesome!

I feel very strongly that children, ALL children, should volunteer and give back to their community.  When you have a disability, often you get used to others doing things for YOU.  I need these children, as I’ve taught my own children, to know that anyone is capable of giving back, of volunteering, of doing something good for others.  As our special project this year, we used Ziploc bags.  On one side, the children decorated them with tactile stickers, ribbons, lettering and glitter. The fronts of all of their bags say “Thank You”, in print and in Braille.  On the back of their bags, they could choose the stickers of their choice…monster trucks, flowers, spiders, ice cream items, a soldier, and so forth.  Then we took the children to the local dollar store and gave them each $7 so they could buy 6 items themselves to fill the bag with toiletry items for soldiers in Iraq. From this lesson, we learned about the brave men and women who are fighting for their country.  How it is hot and sandy there and there are no Walmarts or drug stores where they can buy the basic necessities such as soap and toothpaste.  The children each made their own thoughtful list of items they wanted to buy.  They learned the $7 bought only 6 items because there is a tax we all have to pay.  One by one, the children went into the store, shopped, and spent their money.  5 toiletry items and 1 “fun” item.  The fun items included such things lollypops, playing cards, gum, yo yos, hard candy, perfume and hair gel, (for one boy who insisted the soldier who got his bag would want to spike his hair into a mow-hawk.)  The children then came back to camp and joyously filled their bags. It was a wonderful learning experience for them, they had great fun doing it, and they learned that anyone can do something for someone else.  Once completed, we had 50 bags stuffed to the brim to donate to Give2TheTroops, Inc., which sends such bags to Iraq, Not too shabby of a day!

Many other wonderful experiences happened at camp this year, and I will write more at another time.  Right now, I am pooped from all of the unpacking, and my bed is calling. I did not see much of my bed during camp for some reason…

An Active Life with Limited Vision

Francis, who is severely visually impaired enough to be considered legally blind, was skilled enough that he was able to attend a mainstream kindergarten.  He needed some modifications, including large print materials.  He adjusted well to the class, but one week came home and told me that they had a guest speaker come to their classroom.  An exterminator came to the classroom to tell them about termites and such.  He was clearly shaken by the presentation, and for the next several nights he had nightmares, couldn’t sleep, and kept the light on in his room.

He was petrified of termites!  Trying to calm him down, I said “Why are you afraid of teeny tiny termites?”  “TINY???” he cried, ‘They’re HUGE!”  Only people who have driven through Providence, Rhode Island and have seen the 30 foot long, 10 foot tall “Big Blue Bug” as an advertisement for an exterminator which sits proudly right next to Route 95 would understand why he thought termites were huge.  After all, he was too visually impaired to see a real termite, and thought that all termites were that big! No wonder he was so frightened!  We’ve had a good laugh over that story for years!

Another interesting story was how he chose his friends.  With limited vision, he could only make out vague details of the other children.   Yet, he had one good friend named Eddie.  He and Eddie always hung out together.  One day I brought him to school late, and as I looked over the sea of Caucasian, blonde haired little five year olds, I heard Francis say “There’s Eddie” as he happily jumped through the crowd to sit next to the only African American boy in the class.  Real easy to spot!

As Francis got older, he wanted to participate in sports.  He took up wrestling through the Police Athletic League where his vision would not impair his performance.  I, however, had never been to a wrestling match before.  At his first match, he was wrestling with another boy his size and he reached over while the other boy supposedly made an “illegal move”.  Francis’ arm cracked the boy in the nose, and soon there was blood everywhere.  I’m screaming.  The kid with an obviously broken nose is screaming.  And Francis was screaming because he had won the match!  That was his one and only wrestling match. Okay, so blame me for being an overprotective mom, but the sight of blood tends to sour me on a sport.

After that, Francis took up swimming, a sport he excelled at, and one in which he could not get hurt or hurt anyone else.  He remained in this sport for many years, and won several honors for his fast swimming.  It gave him a chance to be a member of team and compete with other people where vision was not an issue.

Francis also became an excellent skier, skiing by following closely in the tracks of a lead skier. He went to winter camps in Colorado run by the Christian Braille Foundation from the age of 14 years old, flying alone across the country to join other skiers with vision impairments.  By the time he was a young adult, he was easily skiing black diamond slopes in Maine and New Hampshire. much to my chagrin.  I was petrified he was going to ski into a tree!  (This was around the time one of the Kennedy’s died by running into a tree.) In his early twenties, while Francis was attending college in Cambridge, England, he made several forays skiing in the Alps.  He sent me a gorgeous picture of him at the top of the mountain, the sunshine on his back, his dark glasses gleaming in the sun with a big smile on his face.  He signed the picture “Look, Ma!  No trees!”  because skiing in the Alps is done above the tree line.  I felt much relieved.  What a great place to ski!  Until I learned from someone that there are not TREES on the Alps, but there are plenty of AVALANCHES!

While in Cambridge, Francis joined a punting team. His team was very successful because he was the lead “punter”.  (I don’t know what it is called…) He would stand at the front of the long, flat boat with a long pole.  Because of the fact he was 6 foot 4 inches, his pole would go deeply into the water and propel the boat forward.  He was also very agile and could do this very fast. His team members would direct him on which way to steer, and they became a champion team!

Despite all of my fears and worries as a parent, Francis has successfully made it to adulthood and continues to try new sports, surfing in Hawaii, wind surfing in California,  and, , jogging in marathons.  He even obtained a license to captain his own sailboat crew.  It just demonstrates that being legally blind does not have to hamper your activities, they just are done in different ways!

A kiss is a kiss is a kiss…

Showing my two youngest children, Angel and Marie, that l love them has always been a challenge.  I can tell Angel I love him 100 times a day, but he will never believe me because he feels unlovable (due to early childhood abuse.)  He has dissociative identity disorder (multiple personality disorder.)  Sometimes, this 210 pound young man will come and sit on my lap.   He is not 15 years old at the time, but three.  He will snuggle his head against me and I will put my arms around him, (although that is getting more difficult due to his size!)  Then I will sing the Song “All of you…”  Only my words are “All of you. I-i-i-i-i-i-i-i-i love all of you.  All of you, even your angry o-n-e.”  He smiles at this, because it is his angry part that feels so unlovable.  I can sing it over and over again, and he will smile.   The three year old in him believes I love him, but his angry part has been lied to many times before.

Marie has a different issue with my love.  She promised her birth mom that she would not love her “new” mom.  She is very resistant to kisses and hugs or any other signs of affection because she feels she is being disloyal, (She has expressed to me she cannot show me affection because if she sees her birth mother again, she will be very angry with her.)  So, we have survived on fist bumps and the “I Love You” sign in ASL.  However,  I have ways to show her affection in every day life.  For example, ever since she came to live with us at the age of seven, I have dried her off after her shower. This has involved sitting on my lap on the toilet seat while I hug her deeply with the towels on.  She melts into my lap and I can tell that she really enjoys it.  If I stop too soon, she will ask for more because she is “still wet”.  She is 13 years old now and I still towel dry her, (although she modestly wraps herself in the towels before I come into the bathroom.)  She still needs my love, even if she cannot accept it in the normal way.

Both children, however, get the biggest kick out of giving me one special kiss.  This is not an ordinary kiss, (so it would not go against Marie’s promise to her birth mom.)  This is a “let the dog lick them all over their mouths and then they run to me to give me an extra sloppy dog kiss”.  I make the obligatory “YUCK!” face, and they both convulse in laughter.  Ha ha!  They “got” me again.  Hey, a kiss is a kiss and I’ll take it any way it comes, even with dog slobber!

Twenty Ways to Get Your Child to Leave a Waterpark…

I took my daughter, Marie, to a water park today.  Water parks are wonderful inventions!!!  All kinds of neat stuff to do in the water.  There is a big wave pool, which is kind of like swimming in the ocean waves except for the sand and the salt.  This is my favorite part of the water park, where she and I float in tubes holding onto the handles of each other’s tube and bobbing up and down in the water.  (I do have to say that lately I have gained so much weight I could probably bob without the tube…)  We went on water slides, in the lazy river, and I even spent some time in the hot tub.  I lay in the hot tub straight out, with the water jet aimed right at the back of my neck.  I lay there floating, eyes closed, enjoying the hot, pulsating water, feeling some of the tension release in that part of my body.  The tension release was short lived, however, as I was soon frightened out of my mind by a lifeguard who jumped into the hot tub to “save” me.  Because I was lying there floating with my eyes clothes, he thought I had passed out or something.   I was very embarrassed because by now a crowd had formed around me.  I do have to say that it might have been worth it to pretend I did need saving as the lifeguard was a very handsome young man.  But I digress…

The title of this is Twenty Ways to Leave a Waterpark which I write after my sympathy in seeing numerous young children dragged crying and screaming out of the park.  One couple near me just announced it was time to go to their young child.  They child said no.  They yelled it was time to go.  He said no.  They said they were going to leave him at the water park and go home without him.  He turned to go back in the pool. They dragged him out kicking and screaming.  After seeing this happen time and time again with all ages of children, I thought I would share my “leaving the water park”  parent wisdom…

First, close your eyes and picture doing something you really like to do  (OOHH!!!!  Wait, don’t close your eyes or you won’t be able to read this…)  Okay, just think about something you really like to do…watch a baseball game, go to a concert, eat chocolate pudding and so forth.  Then imagine that mid game, mid concert, mid bite of chocolate pudding someone in authority comes and takes it away from you and tells you it is time to go. No advance warning.  No waiting until the end of the 9th inning.  Just “it’s time to go!”  Would you go quietly or would you rebel?  Children have the same feelings.  If they are quickly taken away from something they enjoy doing, they most likely will rebel, and rebel loudly!  So, here are my ways to successfully leave a water park with a happy child.

#1  You could plan to leave the water park at closing time, which would be a natural transition for the child.  The slides and pools are closed.  It is time to go home.  This was good at the water park we were at because it closed at 6:00 pm.  It would be trickier for those parks that close at a later time.

#2  Another way to get a child to leave the water park would be: about an hour before it is time to leave, tell the child that you will be leaving in an hour.  Tell him/her again at 1/2 hour, then when only 15 minutes are left, then 10, then 5, then calmly usher the child off to the exit, as expected.  It takes time to do this, but the payoff with a hassle free exit will be worth it.

#3  Another method: if your child is the type who likes to ride on the slides, set a number of slides he/she can do before it is time to leave.  This works better with older children and does not need to be done an hour before departure, (unless the lines are VERY long….)  With my daughter today, I told her she had 5 more slides.  Then, after a few more slides I told her she had 2 more slides.  After those 2 slides, she came and got dressed to leave without complaint.

#4 For those children who need a more visual cue, there is a timer sold at Maxi-Aids called the Time Timer.  You set it at an hour, and the background is red.  The red slowly gets smaller and smaller until the time is up.  My daughter has no problem adhering to this as a reminder of when it is time to leave.  She can visually see how much time is left, and plans accordingly.  No arguments.  When the red is gone, her time is up.

#5  I was being overzealous…I only have the above 4 ways to graciously leave a waterpark.  Plus the fourth, most difficult way.  If any of the above methods do not work, one parent (or 2, depending on how large your child is,) scoops the child up in your arms and carries him/her out to the car.  The ensuing wailing and screaming will of course attract attention.Believe me when I say that other parents WILL understand.  Besides, you are at a water park far from where you live and you’ll never see them again, so what do you care what they think?  You WILL feel badly for your child, but, as a parent, you have to be brave and carry through with this.    You have to think of your child and his/her future, and what they will learn from this experience.  I guarantee, you will only have to do it once…

The Deaf Leading the Blind: “But I was just TALKING to her…”

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!!!!

Volunteering is a Gift You Give Yourself

Volunteering is a gift we can give ourselves that can also improve the lives of others. It is a win-win situation with huge implications for both parties. When I volunteer or do something nice for someone I feel happy, almost to the point of giddiness. Before the invention of the Fast Pass for tolls, we would often pay the toll for the car behind us. My children and I would giggle about this gesture, a cheap happiness booster for only $1.00!

I have to admit that all of my volunteer efforts are completely selfish, starting with the adoption of 4 special needs children. People who say I’m “a saint” or “so very special” for doing this are completely wrong. I do it because it benefits me. I get 4 wonderful, if not troubled, children to love and who love me. Despite their many problems, I know that if they were anywhere else, their problems would be much worse. Seeing any improvement in them is a joy, and knowing that I had something to do with that is extremely satisfying. Additionally, I HATE to clean house, so if I have the work of caring for 4 children, then I certainly don’t have time to clean. See? Win-win for me!

I have volunteered with a recreational group of adults with disabilities for 30 years. It is a wonderful group! I do not have to worry about wearing make-up or dressing fashionably because they accept me as I am, as I care for them. I have 50 great friends! We have a bowling league every Monday, and an activity to follow, such as Bingo, a guest speaker, chair dancing, Yoga just to mention a few. We take 2 inexpensive trips together annually. We have been to Disney World, Penn Dutch, New York and Radio City Music Hall, Niagra Falls, Montreal, New Hampshire and more trips too numerous to mention. This is great for the organization’s members because they can have the support they need to travel. I make the arrangements for a motor coach with a wheelchair lift so that our friends in wheelchairs are able to join us. We stay at accessible hotels. The group is great and helps each other, thus proving my theory that almost everyone can volunteer. We have people who are blind who push people in wheelchairs. (The person in the wheelchair acts as the sighted guide!) We have people who are deaf who are sighted guides for the blind. We have people who are developmentally delayed carrying bowling balls for individuals in wheelchairs. It is a wonderful, supportive group. We send each other birthday cards. We have a great social outlet that is entirely dependent upon volunteers. We are so “tight” that when I was pregnant with my oldest son, they threw a shower for me, and they gave me all items I could use so I could bring my son on trips with them…portable crib, stroller, travel size baby lotion and baby powder. At the age of 4 months, my son first started attending this group, and he traveled and volunteered with us until he was a teenager. When my other 4 children were adopted, they similarly came with me and this group, and volunteered to the best of their ability. They loved to help the developmentally delayed play Bingo, and they delighted when their “friend” won! They have learned to be happy in the success of others. They have all provide sighted guide assistance for the blind, pushed wheelchairs, carried bowling balls and assisted in any way needed.

My children have been raised to be conscious of the needs of others. My older son, Francis, is legally blind. That did not stop him from volunteering. In high school he became and Eagle Scout by organizing a collection of 5,000 pairs of eyeglasses which were donated to the local Lions Club. He volunteered at a local child care center and loved playing with the little children. He was an assistant Sunday School teacher and a volunteer annually at a camp for the blind and Bible School. In college he volunteered out of state several times for Habitat for Humanity. He might not have been able to see to pound in a nail, but he was strong and completely capable of carrying heavy materials and helping to hold walls up. He also helped to coordinate several food drives and walk-a-thons at his college. Currently, after obtaining his PhD from Cambridge University in England, he has his dream job of designing computers for people with disabilities.

My daughter, Dinora, adopted at an early age from Guatemala also joined us weekly and on trips with the recreational group and she also was an Assistant Sunday School Teacher. She and I did some fund raising to help open the soup kitchen, Tus Manos, in Antigua, Guatemala. Her most rewarding adventure was to spend the summer after high school graduation in Guatemala to help open the soup kitchen. I was there on the actual opening day, and the joy was overwhelming. Dinora had on an apron and a huge smile as she passed out food. She made sure to make eye contact and was friendly with everyone by giving them a pat on the back. Even the individuals who were disheveled and barefoot coming through the line with their eyes glancing downwards were rewarded by the accepting, compassionate friendliness of those passing out food. When they left the line, tray of food full, their eyes were looking upwards, often filled with tears. Dinora said to me she was thrilled to come and help out “her people” because she had led such a privileged life and they had not. I had brought with me a collection of new flannel shirts (on sale so cheaply I could not pass them up.) Dinora and I passed them out and the men, in tattered clothes, would humbly bow and thank us. It was a wonderful, uplifting trip. We traveled in a beautiful country and met many beautiful people who touched our hearts forever.

My son, Steven, who has Attention Deficit Disorder, Asperger’s Disorder and Obsessive Compulsive Disorder also attended the recreational group as an infant and toddler. Despite his disability and limited social skills, he developed compassion for people with all types of disabilities from all walks of life. When he was about 8 I remember traveling with him in downtown Boston where there are many beggars on the streets and in the subway. That child had to give money to each and every one! He gave out all of his own money and then asked me for more. As we were about to get on the last subway he saw a disheveled man playing the guitar and he asked for more money. I had no more dollars to give and he said he couldn’t get on the subway until we gave this man something, so we both dug in our pockets to look for change, and managed to scrape up 37 cents which he ran over and put in the gentleman’s bucket. Now, at the age of 17, he uses his obsession with reptiles to volunteer at a reptile education center. He stands at the entrance with a huge boa constrictor, python, turtle or alligator, allowing people to pet the reptile and answering all of their questions. He may not be good at social interactions, but he found his own niche in which to volunteer.

Currently, my 15 year old son, who has Dissociative Identity Disorder from years of early childhood abuse, uses his “game show host” personality to call for the monthly Bingo game with the recreational group. He is HILARIOUS! He puts so much humor and energy into the Bingo games that this is their favorite activity. He also uses some of his own money to buy little Bingo prizes when he sees something he thinks they might like. In return, he gets their acceptance and love. He likewise calls Bingo games for a local nursing home. As a boy who desperately needs affection and acceptance due to his disability, it would normally be inappropriate for a 15 year old boy to hug adults. However his Bingo groups are comprised of many adults who have no family and no one else to care for them. They need his hugs and affection as much as he needs theirs. It is a win-win situation.  He also volunteers at his school as an “Autism Buddy”, a social group where the high school students provide activities and social interaction for younger children with autism.

My 13 year old daughter who is deaf and has Post Traumatic Stress Disorder and Attention Deficit Disorder loves to come to the recreational group so she can be a sighted guide. She has taken great pleasure in her ability to do this. She regularly guides women who are blind into the ladies room, showing them where the stall is. She has helped to feed individuals who need assistance, gently wiping their mouths if food drips down. She also volunteers in the same nursing home as my son. Her job, however, is to clean out the bird cage, (which she LOVES,) and to play Rummy with the residents. They are buoyed by her youth and enthusiasm and she loves it because she is helping.

Perhaps the greatest opportunity my children have had is having an uncle, (my brother) as a relative. My brother was born with Rubella Syndrome in 1951, He is developmentally delayed, legally blind, has a severe speech impediment and has a hearing impairment which has progressed to profound deafness. He became schizophrenic when he was 18, and this has gotten worse, with most of his conversation having to do with his rides on the Starship Enterprise. His head is greatly misshapen, he has only 2 teeth in the front, one side of his mouth droops down, he drools, and he has difficulty walking around and frequently trips without a strong arm to hold onto, My children adore him! He generally lives in a group home but I pick him up on Saturdays and holidays to spend a day with our family. He is greeted by a “Hi, Uncle Steve”, a hug and a smile by them all. The children are used to being a sighted guide for him, and will sometimes argue over who gets to do it. My brother is very easy to please. His greatest joy is riding the escalators at the mall, getting a diet coke and, to make it a perfect day, having a piece of cheesecake or a sundae. We took him yesterday to the mall, riding around for 1/2 hour on the escalators and going to the movies. He got his soda at the movies and afterwards we stopped for dinner and cheesecake. He was ecstatic! When we brought him back to the group home, he clapped his hands and told them it was the best day he ever had! Seeing someone so happy over simple pleasures is extremely humbling. Although caring for him is not in itself “volunteering”, it contains the same components. We do something to make his life better and we are rewarded by his happiness and joy. Money can’t buy the sense of satisfaction that brings to everyone involved.

In summary, to volunteer is a gift we give to ourselves as much as the gift we give to others. Most people, including children and people with disabilities, have the ability to volunteer. It is an extreme self-esteem booster and makes life much more fulfilling. I highly encourage it.

Angels Among Us

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!

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!

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!