Archive for the ‘children who are deaf’ Category

‘Twas Once a Child

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My daughter, Marie, has reached adulthood, having graduated from a residential program that had services for both her deafness and her mental health issues. This is the age of worry for any parent, especially one with so many challenges.

When she came to live with us at the age of seven and we were told she was “just deaf”, we could not have properly prepared ourselves for the roller coaster ride of a life she, and we, would have. She was a wild child, blonde hair askew, eyes angry, mouth so hungry she would hoard food under her mattress. She was very angry she had been removed from her mother, (for doing unspeakable acts which shall remain unspoken.) Despite providing her with a healthy, well cared for childhood, Marie’s disposition had been preformed. She would lie, steal, beg strangers for money, and reject all of our efforts to parent her. A hug and a kiss would throw her into a fury. Discussing our parenting situation and our need to show her love, she reluctantly let us “fist bump” her. Years later she apologized and told us her birth mom made her promise not to hug or kiss us, and that we really wouldn’t be her parents. It took us many years of fist bumps before she would accept a hug, and many years more before she would let us kiss her. She is now a young adult, and freely hugs and kisses us if the mood suits her. She shows genuine affection and appreciation, the highest reward any parent could expect from an original wild child.

Although Marie can be very capable, she has been unable to live in a non-structured setting because of her unstable bouts with Post Traumatic Stress Disorder. For those unfamiliar with this life altering condition, it is experiencing horrific memories so acutely that one becomes “in the moment” of prior abuse, crazed eyes staring back as though at her accusers, ready to defend herself with flailing arms and legs and gnashing teeth. An ambulance ride to the hospital and sedation was the only thing that could bring her out of her experience. It has always been especially tear inducing, (for me,) when at the hospital, with her hand in restraints, she would wake from the sedation, look around, and finger spell (ASL) asking me where she was, having had no memory of the event. Next she would say her throat hurts, (from screaming, no doubt,) and ask for a Popsicle, which she would skillfully eat while still in restraints.

Marie is now formally an adult. A lot of planning has gone into finding an adult home for her, one that would be staffed 24 hours. My calling all possible supported living programs in our state began about a year and a half ago. With the dual diagnosis of deafness and mental illness, no program would accept her. Many of the programs who may have had prior experience in working with her, never even returned my calls.

After working closely with the Department of Developmental Disabilities, whose frustration and efforts equaled mine; they were able to establish a placement for her that has far surpassed our expectations through a program used to dealing with adults with more severe developmental disabilities. They had no prior experience with a young adult with both of Marie’s difficulties, but once they learned there was someone in such need, they stepped right up and took on the challenge.

Marie now lives in a cute, little house on a nice residential street. As described by those on the show “House Hunters”, this one would be described at “Retro”, with bright yellow tile, a front door carved with circles, and a front porch with wrought iron table and chairs. Neighbors bring over cookies and wave to each other on the street. There are three bedrooms in the house, and she is hoping that a housemate will join her soon. She insists that her house buddy like to watch scary movies, (VERY scary movies,) and, most of all, must not be allergic to pets. Marie has a guinea pig that is usually perched on her chest with both of her hands gently stroking the lucky animal, a calming activity that works for both her and Oreo, who is black with a white center, of course.

Marie is thrilled to be able to go shopping for food she likes, not necessarily the food I have cooked for her. She is no longer in school, so work activities will happily replace the classes with which she used to have such frustration. She has directly chosen the things that she would like to do during the day, throwing out suggestions I would have thought unobtainable.

Marie has always loved to ride horses but gets frustrated that when we go, her horse needs to be tethered to another due to her deafness. She recently began an activity at a horse farm that facilitates riding for children with disabilities. For such children, the riding is therapeutic, but the horse walks slowly. Marie’s job is going to be to trot the horses at the end of the day because the horses themselves get bored walking slowly. What better job than that for someone who loves to ride horses?

Marie’s penchant for all animals has earned her a spot working with “disenfranchised” cats and kittens, that is, homeless felines. She will clean the cages, feed them, and then “show them off” like Vanna White highlights the letters on “Wheel of Fortune”. Oreo will be jealous, I’m sure, so Marie will have to wash the cat scent off before she returns home.

At this point in her life, Marie is feeling very good about herself and her care for others. She has signed up for a Meals on Wheels route, and all of those hugs she didn’t give in her early years will undoubtedly be dispensed ten times over among her lunch recipients.

As a mom with a daughter for whom life experiences didn’t start out well, I am so thrilled that in her adult life she will be doing the things she enjoys with people who will support, encourage and appreciate her. What more could any parent ask for?

 

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To read our story raising Marie and her four siblings, please purchase my book, The Apple Tree:  Raising 5 Kids with Disabilities and Remaining Sane. It is on sale on Amazon and Barnes and Noble. Thank you for your support!

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Best…day…EVER

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I was fortunate to be chosen to do a presentation at the National Foster Parents Conference in Orlando last week. Sponsored by my employer, two hours were spent educating professionals on the importance of recognizing and treating mental health issues in children as early as possible, including facilitating school support services such as Individual Education Plans. In an attempt to try to prevent additional mental health issues for undiagnosed teens, (such as depression, anxiety, suicide ideation, and eating disorders,) support and services for mental health issues need to start as early in childhood as possible.

In order to be able to socialize with other foster teens, I brought my daughter, Marie, with me, as it also coincided with her birthday. My presentation was well received, and Marie’s time went swimmingly; the teens congregated in the pool for volleyball, basketball and movie night. (They would have also played Marco Polo, but deferred to Marie’s deafness.)

The day after the conference was Marie’s birthday so she got to choose which Theme Park she wanted to go to, The Magic Kingdom. The last time I had been there was 20 years ago when we had a tragic visit with Steven for whom the park was a sensory nightmare. Since that time, and with 5 children, we had never been able to afford a trip back and the conference offered us the perfect opportunity.

Despite the fact it was Memorial Day weekend, one of the busiest days, and a bright and sunny 98 degrees, we had an amazingly awesome day. Marie was like a young child, soooooo excited about the sights. With a broad smile on her face all day, and lots of laughing and pointing at things she found especially funny, we had the BEST DAY EVER! With the use of the Fast Pass, (free) we were able to book the attractions so we generally only had a 5 to 10 minute wait. (It was astonishing to see how many people were willing to wait in the “stand by” line of 2 hours.)

Marie took pictures of EVERYTHING, including each and every country represented in “It’s a Small World”. (Being deaf, she wasn’t affected by the constant repetition of this song, which is cute for a few verses, but by the end of the ride can be almost unbearable.)

It was our lucky day because an ASL interpreter was provided for those attractions where listening was important; Country Bear Jamboree, Jungle Cruise, Monster’s Inc Comedy Show and so forth, making the attractions much more “attractive” to Marie.

In addition to the rides, Marie was super excited to see the Disney characters all over the park; Mickey and Minnie, Goofy, Cinderella and so forth. (She has pictures of each and every one of them.) She wanted to get pictures of the characters from The Incredibles, but they were leading dances in a dance area and people walking into the crowd to take pictures were not allowed. I told her she had to dance her way in, which she scoffed at. However, with the beats of the song flashed in bright lights all around, and desperate to take their pictures, her body started moving to the tune and she danced her way toward them. She soon was able to snap many “incredible” pictures of the characters as they interacted with her. She was so happy that when the dance ended, her body kept dancing, and danced all the way down Main Street.

Nothing was more amazing to her than the nighttime electric parade. It was comical to see her reaction to the brightly lit floats boarded by all of the Disney characters. As the characters waved into the crowd, Marie enthusiastically waved back, as though they were waving directly at her. “Wow! Look at THAT!” she kept signing to me, giggling.

Fireworks topped off the evening. Although Marie has seen fireworks before, none were as spectacular as when seen over the spires of Cinderella’s castle. Splashes and configurations of color decorated the sky. Even Marie went “ooooh! ahhhhh!” along with the crowd, and clapped heartily when they were finished.

On the ride back to the hotel, Marie gave me the biggest hug and kiss. “I am so lucky to have you for my mom. That was the best day of my life. Thank you for adopting me!” she signed. Yes, definitely the best day EVER!

 

Just Like a “Call the Midwife” episode

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For some odd reason, I love the show “Call the Midwife”. Every conceivable scenario for “birthing babies” (obscure reference to “Gone with the Wind”) is explored. For this reason, I will be sharing the birth of my brother.

I got swept into the drama of childbirth at the tender age of four, an early memory that was etched into my tender brain. Several months before my mom was supposed to go to the hospital to get her new baby, my dad ushered both of us into the car, handed me a very large bag of Hershey kisses and dropped me off at my grandparents. My grandparents were not your usual huggy kissy type, but the standoffish, can’t stand kids type. So I sat there alone in their oven of their Floridian sun porch, eating Hershey kisses and watching Captain Kangaroo and Howdy Doody on their tiny tv. As the chocolate melted, it was imperative to eat them right away, which, of course, I did! Covered in melted chocolate, I was able to enjoy the taste for quite a while afterwards, licking my fingers and scooping up melted spots from my dress.

When mom came home from the hospital, I jumped up and down in excitement to see my new sibling. Mom was not her cheerful self, but managed to open the blanket to show me my new brother. I had never seen a new baby before, so I thought this one just wasn’t done yet. He certainly was tiny! His baby blue eyes were tenderly open, but in the middle of his face was a gaping hole where his nose and mouth should be. Still had to grow in, I thought in my childlike innocence. He had these huge ears that stuck straight out. He was going to be able to hear everything with those ears! He was a fine looking baby!

In my childhood innocence, and before post-partum depression was a diagnosis, it seemed odd that my mother spent all of her time in bed, crying softly. She picked Curtis up to feed him with an eyedropper, but most of the milk dribbled down the side of his mouth spot. Her tears would continue to fall, and I could tell she was upset because he didn’t seem to want to drink the milk. When she laid him down for his long daily naps, he would make mewing noises like a cat. I thought it was cute until learning later that he was crying.

My childhood was turned upside down. My loving, sweet mom changed. There were no more of her tender kisses and words of encouragement. She didn’t want to play games with me, or go for one of our walks around the block. In her place was a stranger.

I was brave and tried to take care of myself, but my heart ached at the loss of my mom. She spent all of her time in bed, sleeping or quietly crying. She continued to try to feed Curtis, but most of the time the milk spilled out and she would put him down again for a nap, where his mewing was heard constantly. Sometimes, when she was asleep, I would pull a chair next to his cradle and unwrap Curtis, letting his tiny fingers hold onto one of mine. I would sing songs my mom sang to me, and sometimes he would stop mewing. Time would go by with me sitting there, stroking his bald head and telling him the story of The Three Little Pigs and Goldilocks and the Three Bears. I would be pleased with myself if he would go to sleep and not mew. He looked so peaceful and sweet!

A few weeks after Curtis was born I was sitting in the living room eating out of a cereal box and watching “Lamb Chop”. The sound of the rocking chair in my mom’s room indicated she was again fruitlessly trying to calm Curtis as he mewed. Her room suddenly brightened, as though she had turned on a million lamps. Streams of light spewed out the door of her bedroom into the living room. It was curious and strange, but I was just a kid and saw new things every day, it was no big deal. Returning to watching my favorite lamb puppet sing and dance, I was annoyed that the streams of light made it difficult to a see the tv.

From that time on, the sleeping/crying mom was replaced with my real mom. Carrying Curtis out of her room for the first time, she came over and gave me a kiss and told me she loved me. My own heart softened, and tears started to slide down my cheeks in relief. I had been brave and tried to take care of myself, but having someone else care for me was much preferred.

Mom and I went to the hospital so she could learn how to feed Curtis better. They showed her how to thicken the formula so it would not spill out of his mouth spot. She learned to squeeze little amounts in and wait for him to swallow it. Soon, both Curtis and mom got the hang of it, and he was happily gobbling down the formula. His mewing, which we had become accustomed to, stopped. As weeks went by, he gained weight and I was sure he smiled at me. Of course, it was hard to tell because he had such a strange mouth spot, but his eyes twinkled in such a way that I could tell he was smiling. What a lovely new baby brother!

Fact #1: My brother had been born with Rubella Syndrome, and was hearing impaired, legally blind, severely developmentally delayed and had several physical deformities. He was born this way because when my mother was pregnant, she came in contact with someone who had German Measles. Thankfully, a vaccine was invented to prevent this disease, which can harm more than the carrier.

Fact #2 It was years later that my mom explained what happened that day when the bright light filtered out of her room. She had been rocking mewing Curtis, herself crying and uncharacteristically cursing her life and the life of her deformed, newborn son. Unexpectedly, she was engulfed in an unbelievably bright light that emitted the feeling of unconditional love and encouragement. It washed the sadness out of her, and seemed to tell her everything was going to be all right. She knew it to be a Divine Being, and this experience changed her life, and mine, forever.

 

 

To read the life story of Linda’s sweet brother and Divinely amazing mother, along with her own passion for caring for children with disabilities, please purchase her book; The Apple Tree: Raising 5 Kids with Disabilities and Remaining Sane. It is available on Amazon and Barnes and Noble.

 

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.

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