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!

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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!!!!

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 Joys of Parenting (?)

Parenthood can be a lot of work at times, especially with children with disabilities, but I always prefer to see the joyful side of parenthood for the following reasons:

1. The sight of a sleeping child, no matter what age, melts my heart.  We always take pictures of our children sleeping on Christmas Eve, so I have a collection of how their sweet sleeping faces look as they age.  It never ceases to affect me and I smile at each and every one.
2. When a child is in a school performance, from pre-school graduation, school plays, award ceremonies, right up to college graduation my pride soars.  Tears always come to my eyes as my well dressed for the occasion child “does his/her thing.”  Each child’s “thing” may be different…Steven, especially in the early years with his sensory integration deficit, would actually hide under the chair, (or the pew in church as was the case when he was supposed to make his first communion.)  Francis would walk slowly looking down due to his visual impairment, and he would be hesitant about who to go to until he got close enough to see them.  Dinora would “strut her stuff”, with us all excited at her accomplishment.  Angel would put on his best “game show host” face and wave to the audience as if the event was entire for him.  Marie would…well, I’ll save that for a later blog because that is a real interesting story!
3. Each time a child learns a new skill, I am overcome with joy at their accomplishment.  Not just the learning to walk or talk part, but the entire route to independence they take.  My 2 oldest live on their own, have jobs and pay their own bills.  Just the fact that they can pay their own bills causes me to leap in the air with happiness.
4. Sitting around the table eating dinner together usually, (depending on how the kids are getting along,) fills me with the peace.  I like sitting at the head of the table with my husband at the other end, and the kids in the middle.   Holidays and special occasions are always extra nice when all 5 children are there.
5. I feel a happiness only a mother could feel every time a child presents me with a gift they have made for me. Steven made me a wonderful 2 foot tall vase shaped like and alligator, (his favorite animal.)  What mother wouldn’t be thrilled to receive an alligator vase?  The color even matches the colors in my kitchen!  Angel’s, who is 15 years old, has a child-like “part” that makes me jewelry.  He presents it to me with great flourish,  It is always gaudy and  made of huge plastic “crystal” beads.  When I wear it, I feel like I am wearing a chandelier, but I wear it with pride, (until I can get in my car alone and take it off on my drive to work.)
6. Taking the children out for an activity like bowling, horseback riding, or go cart riding allows me to have an excuse and have fun like a kid myself.
7. The times the children prepare breakfast for me is especially joyful, (even though the eggs are tough, the toast is burnt, and the tea has no sugar.  Plus, the kitchen is a huge mess!) I always look on the bright side, and even if my eggs aren’t sunny side up, I am sunny inside!
8. The biggest joy I get out of parenthood is the fact that I do not have time to clean the house…taking care of all of the children’s special needs, all of the therapy, counseling, medical, extra-curricular activities does not leave me any time to clean!  We’ve long ago learned to settle for a “picked up house”, not a spotlessly clean house, (or even a “pretty clean” house.)  I feel no guilt at all.  I would much rather be spending time helping my children than washing the kitchen floor.  I will never lay  when I lay on my deathbed I wished I’d kept my house cleaner!  There are so many more important things to do with the kids, so, sorry, don’t expect my house to be real clean!  Ah, the joy of no housework!!!!

Parenting is a lot of fun and can be filled with joy.  I try to always focus on the positives and downplay the negatives.  It is the only way I remain sane!!!!

Being a Foster Mom

     After we adopted our daughter, Dinora, from Guatemala in 1984, we wanted more children.  However, her adoption was costly and we did not have the money to do it again.  I happened to know someone who took in a foster baby and ended up adopting her.  Great, I thought, and we became foster parents.  The thing I did not realize prior to this experience is that the goal is almost always to unify the child with their biological parent.  We ended up having 14 foster children before we were able to adopt Steven.  Giving up the first foster child, who we had brought home from the hospital with a fractured skull and blind eye, was difficult.  He ended up going home to his biological parents within a month because no one could prove they had abused him.  (He’d fallen off of the changing table, they said.)  I cried and cried the day I had to drop him off, and I sent him home with 3 bags of clothing, a stroller and a bag of toys.  (I later learned not to give away baby items as we were soon again going to be needing them for another child.)  I learned to not get attached to the child, assuming he/she was going to go home.  Yet, each time I got a new foster child, I was filled with excitement.  I got to be a new mother 18 times!!!  Not many parents get to experience that. 

      I write about this because my son, Angel, has a aide who provides 20 hours of services for him.  She has been a foster parent of teenagers, (bless her soul,) and she was called to take another teenage girl.  Angel had been with her when they met, and the few times they visited before she moved in.  Today, this woman was going to pick up her new 14 year old foster daughter, Dawn, from a residential facility for girls.  Angel was not going to come, but Dawn asked if he could please come.  Angel, who loves to impress people with his kindness, bought 2 bouquets of flowers, one for Dawn and one for his aide.  For his aide, he also attached a balloon that read “It’s a girl!”  Motherhood can be a joy as many times as one becomes a mother, even if it is to a foster child!