Archive for the ‘children who are deaf’ Category

With messy hair and an ear to ear grin

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One of my favorite cartoons as a child was The Jetsons. The portrayal of the future was colorful and amazing; cars flew around in the air and people chatted to each other on videophones.  Contemplating the “picture” phone, I shuddered with dismay.  I would NEVER want to talk to anyone on such a device, picturing myself answering with my hair askew, clothes rumpled and dirty dishes in the sink in the background.  If and when it was invented I would never use it, thank you anyway.  My regular phone would do just fine!

Who could have imagined then that one day we would chat on videophones as a normal part of life.  The first time it became significant to me was when my daughter who is deaf went away to school. Using a video monitor, we could chat in American Sign Language, which is SUCH a visual language.  Not only are the hand gestures important, but this special language includes facial and body gestures. For instance, she could sign “school okay”, with a facial grimace and thumbs down sign or with a smile that indicated “okay” was synonymous with “good”. Not to mention the fact that ASL is a visual language that cannot be conducted on a regular phone, and regular mom/daughter conversations would have been impossible. With modern technology, she can call anyone anywhere and an interpreter on her screen would interpret her words for the hearing person she called and sign back what the other person said.  Several times she has ordered pizza from Dominoes in this way, pleased with herself for her independence. She has had the great fortune of using this method for telephone communication during her lifetime.  How much more difficult would it have been had she lived 10, 20 years ago.

The other wonderful advantage of video chatting is being able to be a grandmother to my California son’s 2-year-old daughter.  We have been visiting with her by phone since she was about 6 months old.  I’d sing nursery rhymes and Papa would pretend to tickle her belly.  We were there as she developed, rejoicing in each new little trick she’d learn. When we see them twice a year at Christmas and for her birthday in May, Lailya readily runs into our arms for hugs, sticking her belly out so Papa can tickle it and sitting on my lap so the 3 Little Pigs story can be told in person. After all, she KNEW us because we graced her living room for games and songs every Sunday evening.

With my son being so far away, these visits were also parental support for him. He was very proud to be able to share his daughter with us, beaming with happiness when we told him what a great job he was doing as a dad and what an amazing daughter he has. He would ask our opinion on toilet training and how to get her to eat more vegetables. We were a family and chatting with him made the distance between us immaterial.

Now when I think back to the Jetsons and my aversion to using a video phone because my hair might be messy, I laugh.  Yes, this past Sunday, while singing, talking and laughing with Lailya and Francis, my hair WAS a mess.  I also had on a bathrobe because it was almost time for bed, (due to the 3-hour time difference between us.) With an ear to ear grin, enjoying our granddaughter’s antics, suddenly what we looked like wasn’t important at all.

Here a Friend, There a Happiness

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My daughter, Marie, was severely abused as a toddler and young child. She came to live with us at the age of 7 after being found wandering the streets barefoot at 2 am carrying her infant brother looking for formula for him. The effects of the abuse were immediately apparent. She couldn’t stand to be touched, and would cower under the table if she felt threatened. She was angry all of the time and refused all attempts at affection. (When she was with us for a few years, she finally allowed me to give her a “fist bump” as a way of showing my love for her, a love she certainly did not reciprocate because she didn’t know what love was.)

Posttraumatic stress episodes were explosive and frequent, and required restraints and hospitalization. She had superhuman strength while in the throws of PTSD, as I am sure the EMTs and firemen who came to transport her to the hospital can attest. She turned into a super kicking, screaming, biting and hitting machine, and it was amazingly frightening to see.   If put in clothe restraints, she would eat through the cloth like a ravenous wolf. The adult restraints were too large and a smaller hole would have to be cut to fit her slim wrists and ankles. She learned to bite the inside of her mouth to spit blood and they tried to put a mask on her, which she immediately sucked into her mouth and gagged on. At the hospital, she would get a shot of Haldol, go into a trance, and wake up questioning what happened. With her hands still restrained and unable to sign regularly, her little fingers would finger spell “Where am I? Why?”

The number of PTSD episodes have subsided to once every 6 months or so. She has learned to love and be loved by her family, and, fortunately, she is making tremendous progress. Marie is going to be 20 years old this month and still attending a specialized school where she can remain until she is 21.

Marie, citing her age that she is an adult, has come more into her own. On her own, she got a tattoo of a dolphin on the inside of her wrist. She loves dolphins since swimming with them at Discovery Cove on her 12th birthday. By choosing that particular tattoo, she reasoned she could look at the dolphin every time she gets upset and it would remind her of a happy time instead of the times she was abused. Like other young adults, she has colored her hair a mixture of blue and blonde, has a lip ring and likes to pick out her own clothes. Her newest adult adventure is finding a girlfriend; recently reconnecting with an amazing girl a few years older than her with whom she attended school many years ago. They have started hanging out and Marie is giddy with excitement. (Marie has never had a real friend of any kind before.)

Yesterday the 3 of us went to Dave and Buster’s at the mall. While Marie LOVES to play the games, sometimes the crowds overwhelm her and she gets anxious, moody and socially unresponsive. Her sweet friend, who does not know the extent of Marie’s early childhood abuse, kept asking her why she was mad at her, which eventually turned into a full blown argument in the car. By the time we got home, her friend was no longer talking to her and said she was never coming to see Marie again. Marie went down and sat on the wall overlooking the lake, her head drooping down. She texted me on her phone, “Help Me”. Joining her on the wall, I noticed she was crying, something I have never seen Marie do. The tears spilled out of her eyes and were running down her cheeks like an ever-flowing fountain. Her mouth was quivering and her sad eyes said it all. I hugged her and the tears turned more torrential. After a while she signed to me “She thinks I’m mad at her and that I have an attitude. I don’t know how to tell her.” Meaning she didn’t know how to tell her about her abuse and that sometimes it still affects the way she acts. She didn’t know how to tell her how much she loved her as a friend, her FIRST friend, and she didn’t want to hurt her, but sometimes she couldn’t control her emotions. She asked me to come with her to talk to her friend to help her explain.

Her friend was annoyed. Marie began about her family history and her friend said that SHE, too, had a mother addicted to drugs and that SHE, too, had been adopted. She said she learned to just “get over it” and why couldn’t Marie? With this criticism, Marie ran from the room and back to the wall by the lake. I explained that Marie had an extremely traumatic childhood, far and above just her mom doing drugs. I explained the hurt, the hospitalizations, and the challenging life she has endured. Her friend’s angry face softened with understanding. As I was talking, a tear slipped down her cheek and she got up and went down to the wall by the lake. When I looked out the window, they were both hugging and laughing.

I pray that Marie’s friend will continue to be her friend and accept her with all of her emotional baggage. It would take an amazing friend to do that, and I have a feeling she IS that amazing!

As The Sun Set in the Warm September Sky

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It was 95 degrees today! On the 6th of September! My daughter, Marie, and I spent most of the day at the movies where it was cool and comfy, munching on buttered popcorn and drinking Diet Coke. Coming home at 5:30 to stifling heat, we decided to take a swim in the pond behind our house. I had not been swimming in the lake in years. (My children, now teenagers and young adults, had lost interest in beach activities, onto other teenage endeavors that don’t involve wet bathing suits, towels, and sand between their toes.) As I stepped into the water, it was refreshingly wonderful! With Marie in tow, we each sat in a tube and paddled out to the middle of the lake. The cool water was the perfect solution for the muggy hot weather. We chatted for a while, (in sign language,) and Marie told me of the importance of wearing socks with her sneakers or her feet stink and people don’t want to come near her. She told me she enjoyed woodworking class which she had just begun, and she planned to build a house with what she was learning. We talked about teachers and boys and what her hopes and dreams are for when she “was older.” (She wants to work petting dogs and cats.)
As the conversation wore down, we both relaxed in the water, just floating and enjoying the moment. Marie took my hand in hers, a move she would have never done all those years ago when she came to live with us and would have screamed if I even touched her. I felt we were bonding anew. She shared her dreams, and now she was sharing her love. We floated in silence, watching the seagulls swoop down to get fish, and the geese fighting with them for air space. It seemed they were playing a follow the leader game, flying side by side, and then swooping into the water, geese honks and seagull squawks. We watched as the turtles poked their heads above the water. When she was younger, Marie would have taken off to joyfully capture them. But today she just floated in silence with me. More mature. More content with herself.
The time seemed timeless; we could float there all day, water lapping at our legs. But the setting sun belied the late time of day. Above the trees beautiful colors arched; pinks, oranges, purples. It was peaceful. It was relaxing. It was joyful. As we sat there in the water on our tubes holding hands…

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If you are interested in learning more about my family, here is 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

A Whole New Meaning to “Swimming with the Fishes”

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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!

 

If you are interested in reading more, I have written an e-book entitled The Apple Tree:  Raising 5 Kids with Disabilities and Remaining Sane  available at I-Books, Amazon, and Barnes and Noble.

It was Like Playing Leap Frog, but I Didn’t Get to Leap!

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I just returned from a four hour trip that should have taken me only two hours.  The day started out wonderfully enough…I drove up to see Marie and take her fishing. Last week she had birthday money and we spent two hours perusing through Dick’s Sporting Goods to get EXACTLY the right fishing pole, strong fishing line, (in case she catches a shark or something similar,) bobbers, lures, hooks and pretend “bait”  (yeh…like worms are really green with black speckles…)  I am pretty naive when it comes to fishing;  we live on a pond with tons of fish, so therefore all bodies of water have fish.  Driving around Marie’s school, we settled on a nice fishing spot that had some large rocks for sitting and many trees for shade.  It turned out we didn’t need shade for long because it became overcast and VERY cloudy, then began to rain.  This didn’t phase Marie, who is known for 4 season, all weather fishing on our pond at home.  Although drenched, she patiently fished, changing bait and lures several times to try to attract the appropriate fish for the area.  Although no fish saw fit to chow down on her line, fun was had by all. She was convinced that the fish could look up through the water at her hulking body and swam in the other direction.  She vowed to next time dress in camouflage gear. (It was only later that I learned that that particular “lake” was actually the drinking water reservoir for the area…no fish…and I was darn lucky all she was using for bait was plastic worms and tin lures!  EWWWWW if it was real worms!))

After dropping Marie back off at school, it started to pour out.  My good ole van isn’t always so good. In fact, it has an electrical short whereby if it gets splashed with water, the engine shuts off.  (It’s one of those things I should have had fixed, but WHO has the TIME?) If the engine has a constant flow of gas, it works okay even if it is wet.  However, if it slows down and there is no gas getting to the engine AND it goes through a puddle, the engine just stops.  Fortunately, I can hear when it happens AND the car keeps rolling on, so I have time to pull over to the side of the road into the breakdown lane.  Being in rush hour traffic AND in a torrential downpour wrecked havoc on the ride home.  When stopped in traffic, I’d put the car in “neutral” to be able to give it gas, shifting to “drive” again once the traffic started to move.  Of course, this did not always work, and often the engine would shut off and I would have to pull over again.  Although the traffic was very slow moving, and as far as I could tell my pulling to the side of the road neither inconvenienced nor blocked anyone, it was amazing the number of cars that would lean on their horns at me.  If I were paranoid, I’d think they were upset…but instead I just smiled and waved. What nice, supportive drivers! Fortunately, the car always started up again, and I’d pull back out into traffic, doing the “neutral”/”drive” dance in hopes that it would keep running. It didn’t.  Time and time again, lengthening the drive home to four hours, I’d pull over to the side of the road, and cars would pass me.  It was like playing leap frog, but I never got a turn to leap…

I think I’ll make time to have the car fixed tomorrow…

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To read more about our life, here is a 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/

But She was Just Talking to Her!!

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My job includes coordinating both a summer and winter program for children who are blind and visually impaired.  Last winter our lovely little group of about 40 went to an indoor water park during February vacation. If you have never been to an indoor (or outdoor for that matter) water park, you are missing one of life’s most wonderful playgrounds with water slides for all ages and skills. My age may indicate I could manage the “black hole”, but my skill kept me in the kiddie area!  (Ohhhhh!  The KITTIE pool again!!!)   Lounging in the lazy river on a double tube was a great way for staff to keep an eye on their child without letting them float gleefully away amongst the throng of people enjoying the current. A huge water playground centered the park, with slides and little pools and tons of water play, including the huge bucket of water atop the structure.  Every so often, the bucket, filled with water, would tip over and the torrential water would come gushing down, soaking everyone as though…..well….as though a bucket of water was dropped on their heads. Because my daughter, Marie, was also on school vacation and she joined us, I chose this particular water park because it featured a surfing pool.  Marie LOVES to “surf”, and on every other occasion we have come to this facility she has spent the entire day doing so, waiting, nose pressed against the glass, at the door first thing in the morning to come in, and being the last one for the security guard to throw out at closing time.going to this water park.

My big surprise was that Marie wanted to help out a group of younger girls who are blind.  The girls had staff who amicably allowed Marie to join their group. 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 such a strong love for “surfing”, my expectation was she would help for a little while, but spend most of her time surfing. Surprise of surprises!!!!  My wonderful daughter did not choose her own activity, but spent all of her time with the little girls, helping them on the slides, doing the “sighted guide technique” to maneuver around the crowded park, showing them where the food was on their plates, (using the clock method,) and so forth.  Marie was having a grand time, and the girls all seemed to adore her.

On the last night of this program. Marie was seated in the booth at the restaurant with two of the girls and their staff.  One of the girls all of a sudden started waving her hands wildly in the air, not just once, but she kept going! Prone to seizures, the medic ran over and asked her if she was okay.  Of COURSE she was okay, she said, 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!!!!

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To read more about our life, here is a 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 Didn’t Know Cats Like to Swim…

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Because my youngest daughter, who is deaf, goes to school out of state, I sometimes rent a hotel room for myself, my oldest daughter and her son, Alley (Alejandro) to visit together.  Last weekend was one such weekend.  I love to see the interaction of the three of them, Dinora signing in ASL to Marie and Alley trying to copy the signs with his small hands.  (He explains that Marie can’t talk because her ears are broken, so she has to use her hands…)  His favorite sign, “swimming”,  is used often because he wants them to spend all of their time together in the hotel pool.  It was during one of their swims, while I was sitting in the lounge chair by the pool, sipping a nice tall plastic cup of Diet Coke, and smiling while the three of them frolicked, that I was overwhelmed with a feeling of joy in my heart. They were beaming with laughter and exuding a happiness that one could not overlook…a deep, profound happiness which doesn’t often come to Marie. Seeing her eyes glint with laughter, tears stung at the back of my eyes, then slowly slipped down my cheeks.  To think that a child who had been so severely abused as she could come through all of that darkness and  despair to ultimately be able to experience such joy made my heart want to explode with love for the three of them.  I could not remember ever having been so content in my life, but my reverie was soon disturbed, but not unpleasantly…

My tears of joy were soon replaced by tears of laughter.  Alley came out of the pool and looked around…  “Where’s the cat pool?” he asked.  “The CAT pool?  There is no cat pool!” I replied.  “Yes! Yes!  In hotels there are sometimes CAT pools!” he argued, frustrated that I could not understand what he was asking. “You know, the pool for the kitties.”     Ah!  The KIDDY POOL!

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To read about Marie’s early childhood, here is a 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/

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