Posts tagged ‘deaf’

She LOVES me! She really LOVES me! (not…)

Anyone who is raising a child with reactive attachment disorder knows that love and caring is not always reciprocated. In fact, often the children are so hostile that we wonder what we are doing wrong and what have we gotten ourselves into? Raising Marie has been like that. Coming to us from living with a mom who allowed unspeakable abuse, Marie was not ready to love anyone. Not letting me touch her, in fact, shoving me away or hitting me if I tried, it took six months for me to reason with her that I needed to have a way to show her that I loved her. She graciously allowed us to fist bump. Our fists met with a minimal amount of touching as I signed “I love you” in American Sign Language with the other hand. As a mom, I desperately needed to be able to share my love with her, whether she accepted it or not.

Through the years, she allowed me to hug her. I would put all of my love forth in that hug, deep, sincere, emotional… Whether she actually got any of that through osmosis, or whether she just tolerated my hug, I never knew. But I felt better doing something to demonstrate my love.

When she was about 14 years old, we were at a carnival and she spotted a photo booth. She had always been fascinated with these contraptions, and she grabbed me by the hand and pulled me over to it, sticking her other hand out for the money to put in it. As we sat inside the booth and the camera clicked, a miraculous thing happened…she turned and KISSED me on the cheek. Whether it was her excitement over the photo booth, (and the demonstration photos on the side of people kissing,) or whether she really felt an emotion and wanted to kiss me, I’ll never know. But I choose the latter. In the picture below, you can see the emotion on my face as she does so. After SEVEN long years!

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Well, a couple of years have gone by, and she and I regularly hug and kiss (she offers me her cheek.) Not much had changed in that department. UNTIL I went to the open house at her school. She saw me walking down the corridor while she was standing with a group of friends. She came galloping towards me, wrapped her arms around me with such force that I almost fell over, and gave me a huge kiss ON THE LIPS! Then she proudly told everyone that I was her mom. SHE LOVES ME! SHE REALLY LOVES ME!

I Didn’t Know Cats Could Swim Redux

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I am very crabby today…went to the dentist. Dentists conjure up very bad memories of pain. Living with a “crazy” dad who loved to eat candy, cookies and pies, along with limited encouragement for good dental hygiene, I had many cavities as a child. When having the cavities fixed, the dentist did not use Novocain. (Either that or my parents would not pay the additional expense for Novocain because my dad was obsessively cheap.) At any rate, I equate going to the dentist with torture. Even though I am grown now, and the dentist DOES use Novocain, the experience in general is very stressful and causes me much crabbiness. Needing a boost out of my bad mood, I tried to think of something that would make me smile. Thus, I am repeating a post I did more than a year ago. One that made me giggle. One that I will share again with you…

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

It Made Me Love Him More

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My hubby took good care of my brother when he used to come home on weekends, (he lived in a group home during the week.) Curtis was a lively, spirited young man who also happened to be deaf, legally blind, developmentally delayed and schizophrenic. Additionally, his speech was extremely hard to understand due to several unsuccessful cleft palate surgeries. I knew what he was saying because I grew up with him, but to most people, his communication was a variety of grunts and mumbles. My kiddos, who also grew up with him around, loved him unconditionally and always managed to communicate in their own ways. Hubby was much more cautious, as he would feel awful if Curtis tried to tell him something that he couldn’t understand. So, hubby did not socialize with Curtis much. Get him snacks, put on his favorite tv shows, wash his clothes…fine. Have a conversation about his wants and needs…not so fine. I had the impression that hubby never really bonded with him, although he was always polite.

Recently we saved up money to purchase our first flat screen tv for the wall, which saw our old, clunky television cabinet tossed to the curb. On the cabinet sat a withered plant, the result of my own brown thumb and inattention. I told hubby to toss it in the garbage. “NO!” he shouted, unexpectedly. I was so surprised at his reaction because he is normally quite soft spoken. Looking closely at him, I could see that his eyes had filled with tears and one had started to trickle down his cheek. When I asked him why, he managed to croak out “Curtis…”, and then he burst into tears. It had been a plant from Curtis’ funeral! I hadn’t even remembered that, (I was in quite a tizzy at the time.) “We can’t throw it out!” he said as he plucked out some of the dry leaves and brought it to the sink for watering. He fluffed it up as best he could and put it in the middle of the dining room table. The next day the plant had a new, larger vase that would let the roots spread out and grow. I saw this as a demonstration that he had, in fact, actually cared about my brother! It made me love my husband even more!

p>For more stories us, please, read my book. Here is a link:

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.

I’ve Never Been So Happy to be Sick!!!!

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Just like everyone else’s, my life sucks from time to time! This past month has been one catastrophe after another. Marie, my daughter who is deaf, had again been hospitalized due to a dangerous PTSD episode. When in a dissociative state, she downed staples in an effort to kill herself. Ever the optimist, I was hoping against hope that her memories of severe abuse would begin to soften, maybe even heal. Alas, not yet…this will be a lifelong battle.

My son Angel, who had just begun to drive, was involved in a rear end collision. While slowing down for a red light, KAPOWEE! another car hit him in the rear, pushing him into the truck in front of him. He was briefly hospitalized for whiplash, but the emotional impact was even worse. Sleeping is a luxury he no longer enjoys; wild fears and thoughts flood his already befuddled mind. He has stopped doing the things he used to do, clearly depressed that his means of freedom no longer sits in the driveway. Through no fault of his own, his major pride and joy, his ability to drive around and help others all day, has been destroyed. The car, safe and well running, was bought new in 2008. The insurance company only paid the Blue Book value of $4200. Because we do not have additional financial means, trying to find a car for such a small amount of money has been a real challenge, and every day that goes by without a car for Angel pushes him further and further into depression.

Marie’s recent birthday party was ruined when Steven “acted up”…having a full fledge outburst. (He has a severe sensory deficit with which he can not tolerate crowds or things not in his regular schedule. I should have had the foresight to arrange for him to be elsewhere.) Steven punched a hole in the wall and swore obscene obscene obscenities, (I know most obscene obscenities, but he came up with a few that were even more hard core.) As he stormed off down the street to settle himself down, the damage had already been done. Mortified at this behavior that most of our guests had never seen, everyone left, making a bee line for their cars, children in tow. Marie, who in her deafness had not heard the commotion, had been fishing on the dock behind our house. When she turned around, everyone was gone! She was quizzical at first, but not being a real “people person”, she took it in stride, especially because everyone had left their gifts for her!

My own work has been more difficult. The agency has hired a public relations person, and suddenly referrals have been flooding in. With an exponentially increased workload, putting in 50 hours a week has not been uncommon. What HAS been uncommon is the wrenching ache that developed in the pit of my stomach. Food would spew out of my stomach a half hour after I’d eaten. I felt awful, but I trekked on, saltine crackers and ginger ale bottle in tow. All my life, stress did not bother me. I could handle anything! No problem! Que sera sera! A little stress was not going to deter me from my job duties! (Like a mailman, neither ran, nor snow nor dark of night would keep me from my mission.) But as the stomach ache dragged on, my enthusiasm waned. I actually became depressed! My life, as I knew it, was over… or so I thought…..

After two weeks of eating nothing but chicken rice soup and saltines, I dragged my depressed little body to the walk in clinic. Taking one look at me, they sent me to the hospital emergency room where an intravenous was started to alleviate my dehydration. Laying there, I watched several bags of liquid force fed into the little vein in my hand. They did many tests, some to which I may have objected but I was too weak to stand my ground. Lo and behold, I was really sick! It wasn’t stress! It was salmonella poisoning from an egg breakfast at a local diner two weeks previously! Although I lay there on the gurney still feeling ill, happiness filled my heart. I was sick, not stressed! Life would return to “normal”, including all of the small tragedies and heartbreaks and problems associated with having five children with disabilities. But I could handle it! Life would go on!

I Am a Certain Thomas

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My life has been blessed with the certainty of God’s existence. My brother was born multiply disabled with Rubella syndrome, (a warning to those who do not believe in immunizations.) He was almost deaf, blind, severely developmentally disabled and had a cleft palate, along with several other physical anomalies. My mom spent the first few months of his life sobbing on her bed. It was a confusing time for me as a child…my mom was not available to me, this new creature in my house mewed like a kitten for hours on end, and my dad did everything he could to not be home. Then, one sunny, warm day, my mom sat in the sun parlor on a rocking chair, rocking Curtis as he cried his kitten cry. Then a miracle happened…she was visited by the Holy Spirit. He/she came right on in, with a brightness that far surpassed the streaming sunlight, a brightness that would have been blinding were it not for the fact that it wasn’t. With a warmth of all encompassing love and joy. With a deep understanding that was somehow passed along to my mom. My mom stopped crying that day, and never again cried for my brother. Instead, he was raised with love; encouraged to do his best and accepted for what he could do, not what he couldn’t. My young life was so awesome after this experience! I have lived with that spirit in my heart; joyful and loving. Accepting and encouraging. Yet humble and in awe of all that life has to offer.
While that one experience changed my life, it was another experience that cemented my belief in the existence of a higher being. We traveled much during my childhood, and once we stayed atop a mountain, reveling in the views of the valley during the day and surrounded by pitch darkness at night. It was a time I valued having a campfire, sitting next to it with my poking stick, playing with the coals and listening to the gentle sounds of the night. Sleep came easily. I was awakened by an unbelievably loud noise and shaking of the earth, as though the whole mountain had exploded. The sound was so intense and unusual that my first thought was that it was the end of the world. In that instant, as I imagined “the end“ was near, an incredible sense of contentment and love immediately washed over me, with the joy of anticipation of a peaceful after-life. As silly as it sounds, I was actually disappointed to learn that the noise was just the sound of the thunder high in the mountains. What kind of person, especially a child, would have that thought????? I should have been frightened beyond belief, but I wasn’t. While my experience may lack scientific validity and meaning, it affected me deep in my soul and has deeply influenced the way I live my life.
Since that fateful night on the mountain, there have been a few more wisps of God in my life, the most notable being the unexplained healing of my daughter, Dinora’s deafness.
Many Christians heard the Gospel story of Thomas last Sunday. Thomas was one of Jesus’ disciples who would not believe in Jesus’ resurrection until he put his hand in Jesus’ side to feel his wounds. Since has come the term “Doubting Thomas”. I am Certain Thomas because I have so fortunately been given a rare sight into God’s existence, an existence of which I am sure and without doubt. It has been natural to live my life the way I have, and to do it with love and joy and acceptance. I’m not doing anything extraordinary, only what is natural given my knowledge. It is so much more meaningful for those who life similar lives, helping others, raising children, being peacemakers, donating material and monetary possessions, and loving others without qualification. They do so out of faith without proof, an amazing accomplishment for sure!
How would YOU live your life differently if you knew, for sure, of God’s existence?

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For more stories about my childhood, please, read my book. Here is a link:

https://itunes.apple.com/us/book/the-apple-tree/id538572206?mt=11

The Apple Tree: Raising 5 Kids With Disabilities and Remaining Sane

What’s In My Purse?

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As the mother of children, especially children with disabilities, I have been a frequent visitor to emergency rooms. It didn’t take me long to realize that those hours spent W A I T I N G were tedious for my kiddo and myself. In fact, for my kiddos with ADHD, they could be dangerous. With Steven, he would open all of the drawers and fling the contents onto the ground, swing from the air hoses and climb on top of the curtain. He was generally uncontrollable in an environment that he saw as a playground and I saw full of dangers that would land him in an emergency room for a reason other than for that which we had come! I had a knot in my stomach and tears of frustration. The emergency room staff and I finally learned that the only examining room suitable for Steven was one for psychiatric patients…no drawers, no air hoses, no curtains to climb. That solved the problem somewhat…but the long wait was also a major issue. Visits to the emergency room often ran six, seven hours, and sometimes all night! What to do? What to do? What to do?

Alas, out of need emerged my “emergency room purse”:
*Extra copies of medical cards and social security cards; when under duress with a screaming child coming in with the ambulance, rummaging through my wallet for these items always seems problematic and adds to my stress.

* A written medical history for each child; remembering those pesky spelled medication names and listing hospitalizations and diagnosis are always nerve wracking, having them at your fingertips is priceless.

*Quarters and crisp dollar bills for the vending machines.

*Animal and peanut butter crackers along with some juice boxes so I don’t have to spend so MUCH at the vending machines. (Dispensation of food and drink dependent upon reason for visit to emergency room)

*Cell phone charger (hours waiting…games to play…people to call…need I say more?)

*A deck of playing cards, INVALUABLE for killing time, and also for great mother/child bonding.

*Manipulative toys
for kiddos with ADHD…nothing like having that coil to twirl or that Rubik’s Cube to solve.

*Extra diaper/underwear and pants unless the child prefers to go home in a hospital johnny. (My daughter, Marie, actually loves the hospital clothing and has a whole drawer full…starting from small sizes when she was young up to the adult sizes she wears now.)

*Chap stick; the rest of me may look like Frankenstein’s monster, but my lips will be smooth and pretty.

*A large print, best selling book for me to read; when a kiddo is sleeping, (YAY!) the lighting may be dim and my eyes may be teary, but large print has always served me well.

My life has been spent trying to remain sane while raising children who can be difficult. Emergency room visits are always stressful and my mitigating solution is the “going to the hospital” purse.

Not to be confused with my “going to the movies” purse…

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