Archive for the ‘disabled’ 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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“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…

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The Apple Tree: Raising 5 Kids With Disabilities and Remaining Sane
Authored by Linda Petersen
The link to the book:
https://www.createspace.com/5321986?ref=1147694&utm_id=6026

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/

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