Archive for the ‘disabled’ Category

“God Don’t Make Junk”

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This used to be my mom’s favorite saying. She believed it all of her life, but never as much as she did after the birth of my brother, Curtis. When she was pregnant with him, she was unknowingly exposed to German Measles, thus affecting him with Rubella Syndrome.

Curtis was unfortunate to acquire all of the accompanying diagnosis; he had a severe hearing impairment, congenital heart disease, an intellectual disability, an odd head shape (like a smooshed pear,) a cleft lip and palate, autism and was legally blind with crossed eyes that wiggled back and forth. (Additionally, when he was a teen, he developed schizophrenia, but that’s for another story…)

Because I was only 4 when he was born, I thought he was the cutest thing in the world! He was my BROTHER, after all. I delighted in feeding him formula through an eye dropper, trying to quell his kitten like hunger cries. I loved to rock him in the rocking chair, all bundled up and warm. He was a delight to me!

Curtis’s life in our family was as amazing as mine. Loving, adventurous, interesting, and accepting. Anywhere we went, I would explain to quizzical stares that he was born like that and he might look different, but inside he was the same as everyone else. In fact, he had an amazing sense of humor and would laugh at anything! He loved to eat peaches and watch Sesame Street. As I extoled my brother’s virtues, I could see their stares soften with understanding and acceptance.

The “gawking” role was reversed when I was a parent, and this moment is etched into my mind. Francis and I were at the zoo. He must have been about four years old because I remember pushing his sister, Dinora, in a stroller. Nearing a pen of vastly ugly pigs snorting mud, Francis exclaimed, “Look, mom! One of the animals got out of the cage.” I looked over and saw a horrified mother with a toddler in a stroller. A disfigured toddler, with a gaping mouth like Curtis used to have. And the child was snorting bubbles and drool. Taken aback and horrified by what Francis said, I took his hand and we walked over to the stroller. I smiled at the mom and told her what beautiful eyes her child had! I asked her if it would be okay if we touched him, and Francis and I leaned over and gently rubbed the child’s chubby little hands, which opened and closed in excitement. “He really seems to be enjoying the zoo!” I said, as we parted, smiling knowing little smiles at each other.

I then took Francis aside and explained that God makes all types of children, and “God don’t make junk!” His observational comment was an innocent one, (especially because he is legally blind,) but it provided an opportunity for a valuable lesson.

Every mother wants to be proud of her child, and to have others share in her positive feelings. Every child is a joy! Imagine yourself in the mother of a disabled child’s shoes. Have empathy for that mom. Join in her admiration of her child, and maybe you will also internalize the concept that “God don’t make junk!”

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For more stories about Curtis’ childhood and our adventurous family, 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

How Do the Blind See a Tree?

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Most people can look up and see a tree.  To a child who is blind or visually impaired, their concept of a tree is the bark they can feel. Their concept of a tree is that it is” rough”.  If they have some vision, they can tell that a tree is brown at its trunk, but “a blob of green” above the trunk.  They could grow up and their whole lives not know what a tree “looks” like.  Expanding such basic knowledge of their world is called expanding the core curriculum. It consists of concepts that are not taught in school, but are still important lessons for that child to learn in order to grow up as an educated adult who is blind.

One topic covered by the nine students, ages six through thirteen, at an April vacation program, was the concept of trees and their differences.  During a nature walk, students found that some trees were so small they could fit their hand around the trunk.  Some trees were so large that it took all nine students holding hands to encircle the trunk. Some trunks were very rough, with deep groves, and some were smooth, with little lines barely traceable by their little fingers.

They learned that evergreen trees stay green all year, and they giggled as they carefully touched the sharp needles. They never knew that trees could be so prickly!  Under the tree, they found the pinecones from which a new tree may grow.

They learned that oak trees, in the spring, have no leaves.  They closely examined the branches of an oak with a few dead leaves still attached, carefully feeling them and making the connection with the leaves they see on the ground in the autumn. Acorns which were still attached to the tree branch were felt with much enthusiasm.  They had collected acorns from the ground underneath the tree, but to actually see it attached seemed to be a surprise. They felt the new buds on the ends of the small branches, buds which would soon bloom into leaves.

Students learned about flowering trees, in full bloom during their springtime visit.  Most students were amazed that a tree could have flowers.  In their minds, trees and flowers were two entirely different things.  But there they were; pink blossoms on the end of a cherry blossom tree branch, gentle, sweet smelling little flowers.

As they were feeling and looking at the trees up close, students were in awe.  So many different types of trees!  And they would not describe a single one of them as “rough” because they were finally able to look beyond the bark.

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(I apologize, it has been a busy summer and this is a repost from 2 years ago.) For more stories about children who are blind, 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…

Buy Me Something That Tickles Me

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Lately, some of the things that I say reflect things my mom said decades ago. I met a woman the other day who was cheerful and bouncy, with a large white flower in her bright, red hair and a wide smile. I immediately told my son that she looked like a hot ticket. He looked at me like I was crazy. “She’s a WHAT?” he asked.

And so it is with the items on my Christmas list that I gave my teenage and young adult children, most of whom are economically disadvantaged, (ie poor, broke, don’t have a pot to piss in). I asked them to get me something that tickles me. For those unfamiliar with this description, what I am asking them to buy me is something that makes me giggle inside. “Ahhhhh”, you think, “There can’t be too many items that do so that are inexpensive and suitable to give as a Christmas gift.” But you would be wrong.

Things that tickle me:
**Socks with far out designs. (I work with young children, usually on the floor with my shoes off. While my dress has to be “casual business”, my feet can be free and easy.)

**Jelly Bellies, especially popcorn and licorice flavors. (I would be on cloud 9 eating them, one by one, savoring the flavor.)

Meanwhile, back at the ranch, it would be so awesome if one of my children would buy me a body wash from Bath and Body works, for my nightly bubble baths. (Sweet Pea is my favorite scent!)

I would be made in the shade if I were gifted with a nice, strong pen, preferably with purple or green ink.

A new mug with a sentimental slaying would be fab. (I LOVE to drink my tea.)

A gnarly new wallet would be welcomed, (one with extra room for pictures of all my kiddos!)

Bubble gum flavored lip gloss, with a hint of pink coloring, would help me look like a fox. (even if only around my mouth area…for the first five minutes…before I lick it off…,)

So, you can see, I would be tickled by a variety of inexpensive items that my kiddos could buy me for Christmas. In fact, anything that they buy for me with love will be copasetic. It would bum me out if they spent a lot of money on me, because it really IS the thought that counts!

As I crash on Christmas eve and go to sleep, I know opening my presents on Christmas morn will be a gas, yet won’t cost my children an arm and a leg.

Here’s to hoping your children get to keep their appendages also!

For Sentimental, Sappy Souls

On Columbus Day, my husband and I spent a wonderful day just driving around and enjoying the autumn scenery. I don’t know about you, but I seem to have an unusual sensitivity to the beauty in nature, and was once again overwhelmed by the beauty of the bright white and yellow streaks of sun streaming down through the white puffy clouds. Such a sight always encourages me as if reinforcing the fact that yes, there are clouds, and yes there may be rain, but that sun is still up there in the sky, overseeing it all, just waiting to break through and make things better. As an added visual treat, the sun shone so brightly on the tapestry of peak autumn leaves: oranges, reds and yellows, that I felt a need to wear my sunglasses, but with them on I would not be able to fully appreciate the effect of the over-the-top, gasp inducing colors. No photo, piece of artwork or beautifully sung song could have replicated the intensity of happiness that brought tears to my eyes and joy to my heart.
My husband and I sat, holding hands as he drove. There was no need to say anything. We were at peace, pleased to have such a respite after a hectic week of raising children and dealing with problems. We were in our own beautiful bubble, cell phones turned off so as not to ruin the interlude. It was a wonderful day!
Upon pulling into the driveway of our home, I spotted the two small maple trees which Marie had planted a few years ago. She had excitedly dug them up when they were fragile saplings with broken branches, and planted one on each side of the driveway. She had added gravel at the base of each, and attached a tall, straight, thin stick to keep them growing upright. I don’t know why I hadn’t noticed them before. I had NOTICED them, of course, but I had never really SEEN them. They had grown to be about four feet tall, straight and strong. My breath stuck in my throat as the brilliant, bright yellow leaves danced happily in the gentle breeze. They were a growing metaphor for my daughter, blossoming and beautiful and holding the promise of a bright future in their little yellow leaves. Despite once being fragile and broken, they would grow tall and amazing and fit perfectly in this world, reassuring me that my daughter, who was also once fragile and broken, would grow tall and amazing and fit perfectly in this world.

Cracker Jacks and Oranges: My Kids Have the Best Dad!!!

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I suppose I am prejudiced, because I picked him, but Raymond is a wonderful dad!  I am sure when we dated and eventually married sooooooo many years ago, he didn’t have a clue about the roller coaster ride we were in for.  Sweet little marriage with 2.5 kids, growing old together, holding hands and walking on the beach….forget that!  As the parent or foster parent to 19 children, we have spent our marriage trying to have a positive, loving impact on the the children who have passed through or are in our lives.  I am the flakier, impulsive, eternally optimist slob.  He is the more grounded parent, making sure we have enough money to pay the bills, the house is somewhat clean, and the meals are on the table.  He is like a big kid himself with the children…enjoying playing with them and gently bopping them on their beans when he tells them he loves them. He despises the lime light, and has asked me never to write about him in my blog…hopefully he will forgive me for this post.

During a recent visit to the grocery store, he demonstrated everything I love about him:

The store we shopped at was one in which the discounts are great, but the ambiance is lacking, as are the shopping bags.  This was his domain, as he does the shopping weekly. This is his life…no frills, just get down to business.

Filling the cart with basics, (pasta, spaghetti sauce, bread, cheese, eggs and milk,) he purchased enough to provide for our home as well as for our 2 young adult children who are struggling financially. Because I do not generally go grocery shopping with him, I did not know he did that. His sense of support for his children extends into adulthood. Even though they are out of the house, he is still their “go to” person for flat tires and a listening ear. When he listens, he takes things more serious than I do…for me, there is always a silver lining.  I will try to cheer my child up,  make her/him happy.  However, sometimes children just want to bitch that sometimes life just SUCKS!  He listens, commiserates, and gives them that affirmation.

Because he was shopping with a budgeted amount,  I was playfully reprimanded more than once for putting something in the cart that was not absolutely necessary.  However, he DID justify the expense to put in one special thing for each of our children; Cracker Jacks for Steven, fresh oranges for Dinora,  pasta salad mix for Angel and Lay’s Salt and Vinegar chips for me to bring on the weekend visit with Marie. Most importantly, while getting in line at the cash register, he reached over into a bucket of flower bouquets and spent time picking out the best one for me.  (Yes, he DOES buy me flower every week.)  Practical, loving and romantic.  Isn’t he great?

After filling our cart at the grocery store, despite a long line at the cash register, Raymond was patient.  So patient, in fact, that he let a woman with only a few items pass in front of him.  Smiling, he said “Go ahead of me, please. I’m in no hurry”.  He chatted with the cashier, expressing genuine interest, and he assisted an elderly woman in carrying her groceries to the car. He cares about others, strangers, anyone in need. Is it any wonder he has been a great father to our children?

Any set of parents will experience difficulties of varying degrees.  Raising children with disabilities magnifies those difficulties.  It is a huge financial strain, and any thought of retiring and spending our days walking on the beach holding hands is for naught.  Potential retirement savings have been spent on the care of our children, funding therapists who do not take our insurance, taking time out of work when they are hospitalized, transportation to hospitals and therapists out of state, and other expenses many parents would never dream of having. Quality time between Raymond and myself can’t be spontaneous, but needs to be scheduled. (Rest assured that romance is alive and well with us!) Family and friends are often not our best cheerleaders. (Is that a polite way to put it?)  The challenges have been huge, but Raymond’s support has never been greater.  He has rolled with the punches, as though having a screaming child rescued by paramedics from the side of ferris wheel during a PTSD episode, having a child with twelve personalities (and trying to get along with all twelve), spending the whole day at Disney World in a quiet cove of trees while our son who is autistic collects bugs and worms, never knowing whether to buy girl clothes or boy clothes for your daughter are normal parts of parenthood. It’s is just normal family life to him. And I thank GOD for that…because I could never do this alone…

 

 

 

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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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