Archive for the ‘developmentally delayed’ 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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Come On, Friend!

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One of the joys of being a grandparent is spending fun time with my grandchildren. Sometimes on Saturdays my granddaughter, Rose, and I go to the Play Place at Burger King. She has so much energy that the climbing, jumping, crawling, swinging, hiding and chasing meets her activity level head on. However, the most amazing behavior coming from this innocent little tot is her ability to consider everyone her friend.

Rose, whose speech is delayed, is very large for her age of three, chunky and sturdy, but not overweight. She has a head of wild, curly hair that overwhelms her face. When other children talk to her, she cannot answer questions about her name, how old she is, or other ordinary questions children ask. Instead, she will gleefully look them in the eye, motion to them, and say, “Come on, friend,” as they inevitably run off to play together.

Rose adjusts her behavior to the age and temperament of her friends. Older boys, who would not generally want to play with a toddler, will play “tag” with her, thinking they can outrun her. Giggling, she runs beyond their speed limits with her long legs, chasing them into a corner where she tags them, and she steps back so they can run off and the game can begin again.

If Rose is playing with someone smaller than herself, her whole demeanor changes. She smiles and gently motions them along, skillfully helping them up to the next level, patting them soothingly on the back, and encouraging them with “Come on, friend.”

Rose has the most fun playing with someone her own size. They generally take turns playing “follow the leader”. Laughter streams from the Play Place as everyone is having fun.

Rose does not discriminate between friends, and merrily plays with anyone. One day a boy with obvious ADHD was running, skipping and jumping in a disorganized manner throughout the play area. Rose joined him, step by step, copying the same things he did, laughing uproariously.

Another day, an older girl who was non-verbal with an obvious developmental delay, became her friend. Rose joined her, playing on the outskirts. She copied her; jumping and twirling like her new friend. Every now and then, this girl would make a pleasant noise and Rose would repeat it in a singsong manner, taking her friend’s hand and saying, “Come on, friend,” as they did their dance.

Anytime one of her playmates leaves, Rose runs over to wave and say “Bye, friend,” then looks around for another friend to call her own. If no other children are in the Play Place, she will come and sit with me to have a drink of water and relax a little bit. Sometimes she will stand up and look into the Burger King dining room to see if any potential friends are eating their lunch. “Friends?” she says quizzically, putting both hands up in asking the question. As soon as another child enters the play area, Rose jumps up, runs to them, pats the child on the back saying, “Hi, friend!” as they go off to play.

This past Saturday, I heard screaming coming from the upper level of the play area. Not screaming as though she were hurt, but screeching that affected everyone’s eardrums. The boy with her was screaming also, in unison. Standing on my tiptoes, I saw the boy hit Rose, and Rose hit him back. This screaming and hitting went back and forth a few times before Rose heard me calling her to come down. Generally obedient, Rose was soon by my side where I reminded her that she should not hit or scream. She looked at me with her innocent, big brown eyes, pointed up and said “Friend?” who had continued screaming while his dad sat nearby and played on his cell phone. Reinforcing my rule for Rose that SHE could NOT scream or hit or we would leave, she wasted no time in darting her eyes around the room to find another friend, and soon ran off to play with someone else.

I learned two very important life lessons from Rose that day. She could learn proper behavior, and choose not to engage in misbehavior, even if it was hilarious fun for her at the time. More importantly, she was accepting of all children, and modified her behavior to deal with their differences. What a wonderful society we would have if we all could accommodate those different than ourselves; not just “accepting” them, but actively interacting with them and providing a positive relationship.

Come on, friends, we wait to greet you!

Time Flies in New Hampshire

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We went to New Hampshire a lot when the children were younger, staying in a tent and sitting around a blazing fire, roasting marshmallows and laughing. I loved poking at the fire, which I favored when traveling with my family. Finding a big “poking stick” was mandatory, a green one so the wood wouldn’t burn too fast.

Francis and Dinora were fine with a tent, but when Steven and another foster baby or two joined our family, we had to move up to renting a small “cabin in the woods”. We had tried tent camping with Steven, who displayed symptoms of ADHD from the moment he started to walk. A campsite was too inviting for him, and we spent the entire time chasing him from among and in the trees. Either that, or he would sit motionless, fascinated at wildlife, watching an ant hill for hours on end.

Our conquests of nature were invigorating. To see Ellis Falls, we had a spirited hike down into the woods to view the magnificent wall of falling water, sunlight brightly sprinkling off the cascade. Hiking back up was just enough to make us “feel the burn”. Even though it was a short distance, to us it simulated a hike up a long mountain, including the sense of euphoria when we reached the apex, (the parking lot with our car.)

The children liked Lower Falls best, an area where the water gushed over large rocks, smooth from the years of abrasion. It was fun to crawl among the rocks, often falling into the river, a cold and a welcome respite from the warm sun. When the children aged, they dared fate by sliding down the natural water slide into a small pool of water at the bottom. Hubby and I would bring a cooler of lunch and sit in webbed lawn chairs on the side, closely watching the antics of the children. Steven especially loved this area, as there were many potential wildlife attractions to keep his attention. One year, we hit it right at pollywog season, and Steven and his net were kept busy all day catching the amazing little squiggles of black, (which were, of course, set free before we left.)

We would often take the children out into the lake in our small motorboat. They would go tubing off the end, as Hubby would drive the boat back and forth forcing the tube to repeatedly cross over the wake. They would fish; catching huge, squirmy, samples of fish, which would be released back into the water. It was so funny if they caught a similar fish, thinking it was the same one, as though the bounty of fish in the water sat by just so that the worm could trick that same fish again. There was a small island where our boat would stop and tie up, allowing the children to enjoy a huge rope swing which would send them flying into the water. Joyous fun would be had by all.

The years have gone by and last weekend Marie came along to NH. Did she want to go out on the boat, go fishing, catch frogs from the nearby pond, or swim in the lake? No. Her choice, as was ours, was to lounge around and watch old DVDs. She and hubby especially like The Three Stooges as their brand of slapstick humor requires no ASL interpretation. I never heard so much laughter as last weekend, including a chuckle or two from myself. Then, having withdrawal from Wi Fi and “talking” to her friends, we drove Marie to Starbucks where she could order a smoothie and use the free Wi Fi while sitting in a comfy chair. As we drove away and left her there to go grocery shopping, I had a strong urge to join her instead of schlepping things around the grocery store. Keeping Hubby in mind, however, I was reluctant to say anything, knowing that he would be hurt if I chose Wi Fi over spending time picking out the gourmet ingredients he would use to prepare meals.

We were too lazy to start a fire at night, using the excuse that the mosquitoes would be awful and who wanted to put on the foul smelling spray to keep them away? Instead, we watched more Three Stooges and ate s’mores made in the microwave. Ah…New Hampshire never fails to entertain us. What a great family weekend!

 

Try a Sip of Greasy Wine

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My usual low level of frustration has been tested this week. Anyone who has an adult child with disabilities can understand fully the parenting that goes beyond the age of eighteen. Steven, my wildly impulsive, curly haired son, who was born addicted to heroin and cocaine to a mom with severe mental health issues, has a brain that does not function quite right, especially in the responsibility and common sense areas. His highly valued license was suspended last year for failure to pay for a ticket. After many prompts, in January I led him to the Licensing Board to pay the fine. He then had to take this paper to the DMV to get his license reinstated. He went at least eight times, both when I took him and when he ventured into the crowds himself alone. The fact is, he does not have the ability to sit still or wait for more than 10 minutes before getting agitated, so he had been unable to get his license back. The DMV has wonderful accommodations for individuals with physical disabilities, but wouldn’t it be great if there were a quicker line for those with severe attention deficit hyperactivity disorder. The only incentive for Steven to delve back into the commotion of DMV came when a police officer pulled him over and dispensed a ticket for driving without a license. Off he went back there, late in the day, to get his license. (He was quite excited that he only had to wait 30 minutes, but because the facility was closing shortly, the workers were all working at warp speed to be able to get out of work on time.)   The most frustrating news came in the mail today; a notice that his license is suspended again because he did not pay the most recent ticket…

My son, Angel, seems to be a very good driver, although he is quite fussy about needing to have his car in perfect working and cosmetic shape. Two years ago, he had borrowed my car and, when stopped at a red light, was hit so hard from the back that he was accordianed right into the car in front of him. His injuries were mostly mental, with our insurance having to pay for the damage to the car in front of him, (is THAT fair?) along with the newly instilled fear that he could be killed at any time. My injury was that the insurance only paid for a fraction of what we had paid for this older car, certainly not enough to purchase a reliable car again. It was so frustrating trying to make the best purchase for a minimal amount of money!

About a year later, when he again borrowed my elderly car, the engine literally blew up on him. Again, not his fault. Again, insurance paid a fraction of what we had paid for the car. We searched and searched and found a very old, one owner who only drove it to the church, mint condition car with all of the bells and whistles. (Heated seats! Sunroof! Stereo surround sound!) It was a miracle to be able to purchase such an awesome car for the amount of money we had, and I had truly enjoyed driving it. I say “had enjoyed” because this car, also, has become one of Angel’s victims. This week, while turning with a green light, another car ran a red light and “T-boned” him. He does have some injuries, especially emotional due to this most recent brush with death. My injury is the loss of this “perfect for the money” dream car, the third one in three years. My driveway is again empty.

So last night, trying to squelch my frustration, hubby and I had wine with dinner. I’m not a big drinker, but somehow the occasion called for it. Sitting back sipping it daintily, the ice chips tinkled on my lips. Half of the glass was gone before I noticed an odd, greasy taste. Looking at the ice, what looked like blobs of butter clung to them. Butter? How could that have happened? Hubby’s eyes shot open wide and he ran to the freezer. Because we had corn on the cob the night before, he had put the butter in the freezer, a technique to keep the butter from melting while putting it on the cob. Unfortunately, he had left the butter in the ice tray where it sunk to the bottom of the ice and was ground up to make the greasy ice chips in my wine. I sighed; couldn’t make this stuff up!

His or Her Graduation

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My youngest child, Marie, will be graduating from high school at the American School for the Deaf in Hartford this week. When she came to live with us at the age of 7, her wild child behavior was so bad I never thought either of us would live to see this day. But here it is! She surprised me, this child of mine who prefers to look and dress like a boy, for which with her abuse history, her justification has always been “if you look like a girl, someone will hurt you.” She has chosen to wear a dress for graduation, the very same dress she wore uncomfortably as a junior bridesmaid at her sister’s wedding. Even though that was several years ago, she is determined to squeeze every ounce of flesh into the dress. It is fortunate she will also be wearing a graduation gown or I am sure something would get flashed somewhere!

Although she insisted on wearing her work boots with the dress, I convinced her to wear something “less hot because the day will be warm out.” She agreed to a slide on sandal, and I have chosen a pair that could be used by any sex, (once you take the bows off.)

But my choice of shoe for her makes me wonder if I have not totally accepted her for the person she feels to be. I know many parents would have great difficulty understanding if their son or daughter were gay or transgendered. Marie insisted for many years that she was a boy “inside” and even begged her pediatrician to sew a penis on her. He was very sweet with her, and suggested she wait until she was a teenager before discussing that issue again. After much counseling, it was determined she felt that way only out of desire to be safe, to no longer be abused as she had when she was a young child. Being a boy is still a façade she wishes to project, but not one she innately embraces.

Which brings us to the most recent lifelong dilemma; whether she was going to love boys or girls, a discussion SHE initiated one day. She went back and forth on the pros and cons of both. Bravely, taking a deep breath, I mentioned it would be best to love the person she would feel most comfortable having sex with. Her eyes widened. “SEX?” she asked incredibly, with great disgust. “I never want to have sex with ANYONE!” Too funny! I really jumped the gun!

Despite my desire to buy her flip-flops with bows on them, I really WOULD have accepted her decision to wear work boots, or even to have her doctor sew a penis on her if she was truly transgendered. I have survived my life by learning not to get upset over such matters; it wouldn’t change anything and would only draw us apart, possibly ruining our relationship for years to come. I love my daughter too much and will support whatever adult decision she makes. When she is older and still finding her way in the world, she won’t remember the shoes she wore at graduation. But she will remember my unconditional love and support. What more could a parent ask for?

 

I Know Why My Family Had To Travel

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I had always hated driving, which may have something to do with the fact that I traveled cross-country for most of my childhood years. My life lately includes a lot of it, with a granddaughter in Northern Massachusetts and a daughter attending school in Hartford. Surprisingly, I have learned to enjoy it! I find myself bopping away to music, using my right arm as a conductor’s baton, (one, two, three, four; the movements from music class carefully ingrained into me.) Worse yet, one can find me huskily singing along with great enthusiasm.

Taking non-highway routes as my father always did, the variations of scenery are fascinating. Children play on swings, grandmother sitting nearby, and clothes swing on a clothesline; do they use an old wood stove for cooking? Do they have an “icebox” instead of a refrigerator? Have I crossed over into the Twilight Zone? I remember driving through the same scenes as a child.

Many of the houses are memorable. One with natural wood and white shutters has a toddler standing in the window, waving, green curtains framing her. It is only after a few trips that I realize that that same child is always in the same position, waving, but wearing different clothing. It is not a child at all, but a doll that is lovingly cared for and placed in a prominent spot for all to see. Another red shuttered house has a flag waving on the front porch, a decoration to herald in the seasons and special occasions. With St. Patrick’s Day done and over, a Welcome Spring now blows in the wind. Driving, I take stock of such silly things as how much wood is piled in front of the lumber factory. (During the winter, the pile has diminished.) I was excited to drive by the nursery this spring.  During the winter after the holidays, it had withering Christmas Trees and wreaths, and was a  stark and unwelcome place. (The owners were probably enjoying sunny Florida.) Now, it is abloom with colors, flowers blazing in the sunlight, sunflowers winking at me, mums in pots and rose bushes awaiting planting.  Such a joyful place to drive by.

It was only as an adult that I realized that my dad and our family traveled so much because of his severe posttraumatic stress from the war. We criss-crossed the country, driving on the back roads. Driving hypnotized him into peace, keeping the awful memories at bay while experiencing the delightful ones of finding new places and exploring the many geographical areas of the country.

Driving the back roads has become more important to me now. No flash of highway exits and speeding cars, but leisurely driving through the countryside, relaxing my thoughts. Often, when observing the bright blue sky and puffy white clouds, the bright yellow sun will make its way down as a brilliant stream of light, and tears will inexplicably sting my eyes. Pure peace and joy. I have finally been able to fully understand the importance of traveling.

 

 

Please consider purchasing my book, The Apple Tree:  Raising 5 Kids with Disabilities and Remaining Sane.

Thank you for the support!

 

 

 

Luck? Fate? or Something Else?

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I am a Diet Coke fanatic.  (Before people start telling me that it isn’t healthy for me, I have to admit that it is stress relief to take a long, satisfying sip of an ice cold soda. It might not be healthy, but it has kept me alive and perky!) Being very short on money lately, and exhausted from working a long day, visions of Diet Coke floated in the air. While fishing out a one-dollar bill that desperately clung to life in the bottom of my purse, the van automatically found its way to the convenience store where a humongous drink of Diet Coke awaited me. I put my giant cup under the spigot and filled it to the brim, excited at the prospect of getting such a delight for only 89 cents! Looking up, the large soda sign smacked me in the face; this was not an “all sizes pay same price” kind of store, and a large soda was $1.49! My heart skipped a beat and actual tears of disappointment filled my eyes when I realized I didn’t have enough money to pay. At just that point, the store owner, half my age, struck up a conversation. “That’s a mighty big van out there, must be difficult for you to drive,” he said. “I have five kiddos and it fits our whole family,” I answered with my back to him, still contemplating my payment dilemma. “God bless you!” he said, “The drink is on me!” I turned around and smiled excitedly, thanking him. He could not have understood how much that gesture was such a blessing!

The truth is, our family car situation has been difficult lately.  My Acura ceased to function several weeks ago, and my husband’s work van, 17 years old, also died.  We had to resurrect our old, 12 passenger family van, switching a couple of bald tires off with newer tires from his work van.  Driving the rickety monstrosity was a challenge for me. It wobbled terribly, and I had to grip the steering wheel with 2 hands. I complained to hubby who brushed it off as being “old, what did I expect?” I drove it back and forth to work Monday and Tuesday, still cursing the challenging drive.  Tuesday eve, Steven called me frantically. A friend’s car had broken down near the Providence Place Mall, could I come pick them up? Annoyed about having to drive to Providence after working all day, I climbed into the van to begin the arduous task of maneuvering the eyesore onto the highway.  With the van waving back and forth, I had difficulty keeping it in one lane, but finally reached Steven and pulled to the side of the road near him.  His eyes bugged out as he ran to the back of the van. “Your TIRE is almost off!” he shouted, showing me where one lone lug nut, ready to fall off, had been holding it on. Just as he said that, the lug nut fell to the ground, rolled away and the tire fell sideways onto the ground!  I shrieked in horror and felt like vomiting when I realized what that meant; I had been driving it for 3 days with the tire ready to fall off! (It was Steven and his ADHD that changed the tires…I suspect he got distracted somehow and never finished putting that tire on correctly.) I not only had driven it for 3 days, but I managed to drive it ON THE HIGHWAY at a HIGH RATE OF SPEED to get to Steven. How lucky was I that is didn’t fall off while driving where not only I could have been killed, but I could have killed someone else? I shuddered with realization. It seemed like fate! Or luck? Or something else?

The Diet Coke and loose tire incidents may seem unrelated, but to me, both are an affirmation that luck does not come into play.  I like to think it was Divine intervention, a thought both heartwarming and reassuring.  A thought that always makes me smile…and so far has kept me alive!

 

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