Archive for the ‘disabilities’ Category

As The Sun Set in the Warm September Sky

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It was 95 degrees today! On the 6th of September! My daughter, Marie, and I spent most of the day at the movies where it was cool and comfy, munching on buttered popcorn and drinking Diet Coke. Coming home at 5:30 to stifling heat, we decided to take a swim in the pond behind our house. I had not been swimming in the lake in years. (My children, now teenagers and young adults, had lost interest in beach activities, onto other teenage endeavors that don’t involve wet bathing suits, towels, and sand between their toes.) As I stepped into the water, it was refreshingly wonderful! With Marie in tow, we each sat in a tube and paddled out to the middle of the lake. The cool water was the perfect solution for the muggy hot weather. We chatted for a while, (in sign language,) and Marie told me of the importance of wearing socks with her sneakers or her feet stink and people don’t want to come near her. She told me she enjoyed woodworking class which she had just begun, and she planned to build a house with what she was learning. We talked about teachers and boys and what her hopes and dreams are for when she “was older.” (She wants to work petting dogs and cats.)
As the conversation wore down, we both relaxed in the water, just floating and enjoying the moment. Marie took my hand in hers, a move she would have never done all those years ago when she came to live with us and would have screamed if I even touched her. I felt we were bonding anew. She shared her dreams, and now she was sharing her love. We floated in silence, watching the seagulls swoop down to get fish, and the geese fighting with them for air space. It seemed they were playing a follow the leader game, flying side by side, and then swooping into the water, geese honks and seagull squawks. We watched as the turtles poked their heads above the water. When she was younger, Marie would have taken off to joyfully capture them. But today she just floated in silence with me. More mature. More content with herself.
The time seemed timeless; we could float there all day, water lapping at our legs. But the setting sun belied the late time of day. Above the trees beautiful colors arched; pinks, oranges, purples. It was peaceful. It was relaxing. It was joyful. As we sat there in the water on our tubes holding hands…

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If you are interested in learning more about my family, here is link to my book:

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

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

“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

Mothers, Help Your Sons Grow Up to be Fathers…

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My oldest son, Francis, grew up amongst a caravan of foster brothers and sisters. Specializing in newborns and infants who had been affected by prenatal drug exposure and addiction, our family was usually comprised of my husband and myself, Francis, his sister, Dinora, who had been adopted from Guatemala, and one or two foster babies. Despite the fact that Francis is severely visually impaired, he played an active role in child care, frequently holding a little one, feeding a bottle and changing diapers. When going to the mall, he and his sister would proudly push the double stroller. (With the 2 of them, he could be a pusher without having to see where he was going…) Throughout his childhood, sixteen foster babies lived with us, and caring for them was just a fact of life.

Francis is now an adult with a Ph. D. from Cambridge, a well paying dream job, a wonderful wife and a cozy home complete with a grill for grilling steaks and a lawn to mow. And, as of three weeks ago, a newborn baby. My week spent with his little family renewed my faith in the power of what is learned in childhood. Without even knowing it, I had trained Francis how to be a good father! He bundles his little girl up in a baby blanket, like I had bundled up those babies who were going through withdrawal. Newborns like being in a tidy bundle because they arrive with strong startle reflexes and without much control of their arms and legs. By pulling her arms and legs in close and securely wrapping a blanket around her little body, baby India can feel safe and secure. When she is awake and alert, Francis rocks her and sings songs to her, songs that he heard me sing so many years ago: “Itsy Bitsy Spider”, “Hush Little Baby,” and “The Wheels on the Bus Go Round and Round”. Even though she couldn’t possibly know the songs, the sound of his voice quiets her, and these songs are easy to sing. When he is expertly changing her diaper, he plays “This Little Piggy” with her toes, gently pulling her feet to his mouth to kiss. He exaggerates the “wee wee wee home” by tracing his finger from her toes to her chin, tickling her slightly before kissing her forehead. And while she sits in his arms on the couch, ready for bed, he reads her books with very large print; “Goodnight Moon”, and “Five Little Monkeys Jumping on the Bed”.

On the evening before I left to fly home, he looked over at me and thanked me for giving him the opportunity to practice on all those babies years ago. All of his friends are having babies now, he said, and they are all in a tizzy. Because of the practice HE had, he is a confident parent and not at all nervous with India. I realized that by being a foster parent to infants, I was not only caring for little ones, but also nurturing parenting skills in my oldest sons, skills that will ensure he will be an awesome father!

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For more stories about Francis childhood and our adventure with foster children, 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

I Will Not Clean and Feed Them on Mother’s Day!

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We traditionally celebrate birthdays and special occasions at our house because our family home has plenty of room for our teen and young adult kiddos and their significant others, plus, well, I’m the MOTHER who is expected to host celebrations. My recent birthday party was well attended, but having to clean the house prior to the party put somewhat of a damper on the occasion for me. Therefor, I declared that my children are old enough that I no longer have to host events where I am the honoree. While I have certainly appreciated all of the home-made artwork, baubles and trinkets, flowers, candy, (especially those Swedish Fish,) gift certificates and sweaters, what I would REALLY like is to have a day off with no work. No cleaning. No cooking. No hosting.
A nice breakfast out would be great. I don’t eat much and I promise to stick to the $2.90 “breakfast special” and not order extra bacon.
Or a lunch at a local family restaurant where others will do the serving and cleaning.
Or even out for an ice cream sundae. Or a shake at Burger King. ANYTHING where I don’t have to do any work!
Better yet, they could chip in and get me a gift certificate for a spa day. I dream of getting a massage or a mani/pedi, and their thoughtfulness could make my dream come true.
Alas, my children do not read my blog. So I will get flowers or candy or gift certificates this Sunday, which I WILL appreciate. Just don’t ask me to clean my house so they can come for lunch. They will have to step around the dust bunnies and join me in the backyard where I’ll be relaxing with a frozen wine cooler in my hand, serenely looking at the gentle waves washing over the jumping fish and turtle heads popping up from the small lake behind our house, marveling that time has flown by and my children have successfully reached young adulthood, and savoring in that reality. Ah…life is good…

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

Let Them See You in Me

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My youngest son, Angel, has not been the topic of much of my writing. For some reason, I shelter him and his Dissociative Identity Disorder. It is an insidious mental illness which developed because of severe, continued, horrific early childhood abuse. It has taken him many years of counseling to adjust to the fact that he has twelve personalities that don’t always work together or even know what each other is doing. Even though the special education system in our town has given Angel a first rate, accepting and supportive education, his teenage years have been a real challenge. Angel has a very angry part that spews hatred and vile threats which are too X rated to explain here. Friends who don’t know of his illness have called him to their defense in the middle of the night because Angel’s angry part would willingly and effectively threaten the bullies bothering them. His friends had also taken advantage of his innate kindness and willingness to help, and he found himself driving them everywhere until his gas tank (and our bank account) was empty. Friendships held little advantage for Angel.

And then he found a wonderful young man named Christopher! He and Christopher had been in elementary school together and just happened to reconnect. Christopher provided a friendship that asked for nothing in return, a new feeling for Angel. Christopher encouraged Angel to join the youth group at church. Pastor Joe, whom I had called to alert to Angel’s eccentricities, took a personal interest in befriending Angel. What a huge difference this has made in my youngest son! With a newfound feeling of acceptance for himself and his parts, Angel is beginning to make real friendships without having to hide his disability. Little by little he has discussed his condition with these two accepting individuals. And they still like him!

This morning I was driving home from church and a sense of great appreciation for Pastor Joe and Christopher filled my heart. While driving, I changed the radio station to K-LOVE, my favorite station, which, unfortunately, does not come in very well in my area. Through the static I could make out the songs, which were only background noise anyway because I was deep in thought. It dawned on me that Christopher and Pastor Joe were gifts from God, and that, through them, I could feel God’s deep caring for Angel. Such a thought warmed my heart with happiness and joy. And at that EXACT MINUTE, the radio station became perfectly clear and the song “Let Them See You In Me’ played. My jaw dropped at the timing. Coincidence that this radio station should suddenly come through loud and clear and play the exact song to match my thoughts????? For me, it was just one more confirmation that God is alive and well and lives through some wonderful people!

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To read all about Angel’s early years and diagnosis, 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

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