Archive for the ‘disabilities’ Category

Let Them See You in Me

joy-with-white-300x214

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!

************

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

I Had a Really Long Day Today…

I LOVE to be busy. I would much rather be “on the go” than have time to watch tv or work on my blog. Today was one of those days packed with appointments working with children: three home visits, a meeting with a school department, two evaluations to complete, not to mention traveling all around the state to do so!
When I finally finished work, around 6:30 pm, I still had a church council meeting to attend. Needing a “pick me up”, I drove to the nearest Dunkin Donuts to get a nice, caffeinated, cup of tea. Putting my window down so I could hear the server, my head rested in my hand as I took several long deep breaths, trying to reinvigorate myself. The car behind me beeped, bringing me back to the real world. Gee!! It WAS taking quite a while for the server to take my order.

I looked out of my window and noticed I had pulled up in front of the trash can to place my order…no wonder I was met by silence!

What’s In My Purse?

hospital5

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…

A Christmas Gift from Above Retold…

images

Our family went last night to visit a shrine. as we do every Christmas. The lights were magnificent! The live manger was awe inspiring as the choir sang nearby. Of course, over the years it has become more commercialized…Merry Go Round ride for $3. Ride in the trolley, $5. $4 dollar popcorn and $5 dollar cotton candy. $12 for a small book about the nativity, and $25 for the accompanying small stuffed sheep. $9.95 for a children’s chicken nugget meal. Of course, with more and more lights, the expenses increase, and they have to fund it somehow. But I digress… The money making aspects of the shrine in no way minimizes the true spirituality and healing nature of the location, which is worth all of the money in the world.


We adopted Dinora from Guatemala at the age of 6 weeks, and I was so thrilled to have a daughter!!!  She came with a variety of diseases common in s 3
rd World Country, scabies, intestinal parasites and malnutrition.  But we loved her and fed her and she blossomed into an adorable baby with big black eyes and shiny black hair.

At the age of six months, it became apparent that Dinora was deaf.  She had not yet started to babble like other babies her age, but she also did not turn to her name, or looked at the dog when she barked, or seem to notice the footsteps of me coming into her bedroom.  She would be laying there awake when I walked in, (and, believe me, I am not light on my fight.)  When she finally would see me, she would startle.  She had not heard me.  The day I knew it for sure was a day she was sitting next to me on the floor while I was doing the dishes.  I accidentally dropped a huge lobster pot I was cleaning and it made a horrendous clang on the floor.  Dinora happily sat there playing, her back to the pan.  She did not startle.  She did not cry.  She did not hear it.

We then made the rounds of the doctors.  She flunked regular hearing tests, and had a brain stem evoked response test.  Her brain did not respond up to 90 decibels.  The doctor informed me that she was severely hearing impaired and that we would try hearing aids to maximize her hearing, although they would not be strong enough for her to hear normally.  They took the impressions for her ear molds.

That evening, our family went for a pre-Christmas visit to a shrine beautifully decorated with Christmas lights.  I was feeling sorry for myself.  I had a two year old son who was legally blind, and now I had an infant daughter who was deaf.

There was a statue of Our Lady of Lourdes surrounded by prayer water and many large candles.  There was also a large display of crutches and wheelchairs of people who had been healed by her.  I helped my son, Francis, who was 2 1/2 years old, light a candle. Because it was almost Christmas, and the only candles he had seen were on a birthday cake, he merrily sang “Happy Birthday Dear Jesus”.  I remember saying a non-de-script prayer, still upset that Dinora was deaf.  I still thanked God,  but was not quite as enthusiastic as usual.

The next morning, the dog barked and Dinora woke up!  I thought it was a coincidence until I started to walk into her room and she turned to smile at me. She had heard my footsteps!  I started talking to her and she started babbling back.  Only a day earlier she had been fitted with ear molds for hearing aids!  I excitedly called the doctor, who agreed to see her that day.  Her hearing was tested and it was normal!  Neither I nor the doctor could believe it.  He said in his 29 years as an ear doctor he had never seen anything like it.  He told me that it had to be an “Christmas miracle from Above”.  The visit the night before to the shrine came to mind.  A miracle HAD occurred, and I was  embarrassed because I had not thanked God more enthusiastically the night before. He had granted me a miracle even though I did not ask for one.

Dinora is now 28 years old and has had perfect hearing ever since that day! And I have lived life with a peaceful,generous heart because I know, without any doubt, that God is with me.

**************

To read more about our life as a 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

Buy Me Something That Tickles Me

images
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!

And The Paper Creeped out the Bottom of the Door

gg60360062

A very large, very tall, very old 15 passenger van with a wheelchair lift with over 138,000 miles on it is my vehicle. Not my ideal choice, but “it is what it is” as all of our money is allocated elsewhere. (All those cute little kiddos with disabilities grow up to be cute little adults with disabilities who, unfortunately, find it impossible to be able to work. Not that that makes them any less wonderful, enjoyable or successful, it just puts a little extra strain on our family budget.)

In the van on Wednesday, I was enjoying a beautiful, crisp autumn day, with a slight wind moving the branches around for the trees to show off their few remaining colorful leaves just waiting to join their friends on the ground. Contentment filled the van as I hummed while I drove. I didn’t quite do the lovely singing I usually do because I was on a mission for work. (While driving to make home visits is not usually included in my job description, on this day I was helping out a colleague.) Because I am awful with directions, “mapquested” directions lay on the floor next to the driver’s seat.
As the van whisked along on the interstate highway, I noticed that the directions had moved towards the door. Keeping one eye on the road and one eye on the directions, I watched with panic as the papers moved closer to the door…down one of the steps…down the next step…and finally on the third step. It happened in the blink of my eye (the one that was watching the papers!) As I was in heavy traffic, it took a while to maneuver to the side of the road to stop, and the papers inched towards the bottom of the door. (The door gasket had long ago aged out and fallen away, leaving a space at least an inch wide at the bottom.) Panic set in as a piece of paper entered the crack and ever so slowly inched out…it was like seeing my life flash before my eyes, quarter inch by quarter inch, as the paper made its way free out of the opening. It was so surreal it reminded me of a cartoon…person chasing paper in the wind and the paper is always one step ahead, teasingly just a little bit out of reach! I would have laughed, but inside I was sick to my stomach. My directions were gone! The client I was going to be meeting would be sitting, forlorn, at her home, waiting patiently for the me that would never be able to find her house.
But WAIT! There was another paper there, clinging to the bottom step. Maybe I could salvage the final steps of the street directions. By this time, the van was safely stopped by the side of the road and I flung myself out of the driver’s seat onto the floor of the van to look down the stairwell. On my knees looking down, almost crying with happiness, I grabbed that one precious piece of paper…it included the final steps to get to the client’s home. I would be able to find her! I would make that visit! I was soooooo happy!

While in the scheme of things, losing mapquested directions would not be the end of the world, in retrospect it symbolizes the constant struggles one has when raising children with disabilities. There are often solutions to their problems, but they are flighty and hard to come by. Sometimes they flip through our fingers through no fault of our own and we are left in a slight panic, (sometimes a huge panic…) Fortunately for me, I have always found that last page to my mapquested directions, just enough to make life work out. Just enough to relieve my panic and restore the happiness in my heart. Such is the ups and downs in life…

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.

Under the “Dome of Silence”

cone-of-silence_0

I am really dating myself, but my favorite tv show to watch when I was a child was “Get Smart”, a spy spoof where Maxwell Smart comedically played an agent who always “got his man”, even when he didn’t know how he did it! I relate so well to Maxwell Smart and his “methods”, because my life is been pretty much the same!
But their infamous concept, the “Dome of Silence” flittered through my mind recently in an unpleasant way, a way that made me change my thoughts in a major way.
My daughter, Marie, who is deaf, has been hospitalized again. For parents of children with severe psychiatric disorders, y’all know that hospitalizations are a recurrent theme, no matter how well a child seems to be doing. Life with such a child is full of peaks and valleys, and sometimes the valleys need a tune up. As conscientious parents, we probably all play the same game…do we visit every day? Do we bring food and drinks? Games? Puzzles? In other words, do we turn each hospitalization into a reward for being there?
My brother’s schizophrenia emerged when he was just emerging himself into young adulthood at the age of 18. This was a surprise disability on top of his already existing developmental, vision and hearing disabilities. As my parents aged, he eventually lived in a wonderful group home, but HE also needed “tune ups” in a psychiatric hospital, generally after an incident where the aliens told him to walk ten miles to the train station, or throw himself against the wall as punishment for some unknown offense. These hospitalizations were regular, and each and every time my mom would visit every day, bringing with her his favorite desserts, or a milk shake or ice cream sundae. Her heart ached to see him in the hospital so often, so she would sit there for hours with him, holding his hand or rubbing his back. It made her feel better to visit with him, and it made him feel better also. In fact, it made him feel so much better that the frequency of his “tune ups” increased. I learned as a young adult that being in a psychiatric hospital should not be rewarded with food and puzzles, or even with visitation every day.
I have tempered my need to mother my daughter with the need not to make inpatient hospitalizations seem better than the residential school in which she lives. Following my own instincts, which were reinforced by Marie’s social worker and psychiatrist, I have limited my visits. Yesterday, however, I changed my mind.
The hospitals have all been wonderful at providing ASL interpreters for at least 12 hours a day, which facilitates her conversations with nurses, social workers, unit workers and her psychiatrist. Marie does not, however, want to utilize the interpreter in conversations with other children. She tries to fit in with them, but does not understand what they are saying or laughing at. Being somewhat paranoid, (aren’t all teenagers?) she suspects they are laughing at her. She tries to join in, and they may include her for a few minutes, but soon the conversation continues over her head, and the children are once again laughing and joking and not including her. As I was leaving yesterday I witnessed this happening, saw the look of sadness in Marie’s eyes and noticed that she was holding back tears so as not to further embarrass herself in front of the other children. She looked so alone, and in reality she was. The other children were under a “Dome of Silence”. She could see them talking, gesturing and laughing, but could not hear or understand what they were saying. I don’t know why this obscure reference came to mind, but it did, and the visualization of it has changed my way of thinking. I realized that her isolation from others trumps the need not to reward her for being in the hospital. Nothing in the hospital could be a reward for her, as she is not part of the community as she is in her school. If anything, one would think she would be so adverse to being in the hospital that she would do anything in her power not to be hospitalized. Ah, the irony of that nostalgic “Dome of Silence.” I think I will visit for a few hours today and bring her a milkshake. We will sit there and “talk” in ASL and I will hold her hand like my mother did with my brother. She will no longer be sad and isolated, at least not during my visit…

********

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/

Is There a Cupboard for Cans of Food?

yellow-house-hi

Actual conversation overheard while I was driving children who are blind to activities during the summer program with which I have been working:

Her:   “What street do you live on?”

Him:  “Main Street”, (which is 5 miles long.)

Her:  “What color is your house?”

Him:  “Yellow”

Her:  “YELLOW?!?  I used to live on Main Street in a yellow house.”

Him:  “Wow!  Maybe it is the same one! Did it have two bedrooms upstairs and one bedroom downstairs right next to the bathroom?”

Her:  “YES!  That sounds just like the house I used to live in! Does it have a driveway on the side of the house with bushes by the front steps?”

Him:  “YES!  How about a dining room where it can fit a table that seats ten people?”

Her:  “Oh, my family used to get all together there on Thanksgiving.”

Him:  “MY family gets together there for Thanksgiving!  Did your bedroom have a closet door that got stuck?”

Her:  “YES!  That was my closet door!”

Him:  “And how about a creepy basement”?”

Her:  “YES! YES! I was always afraid to go into the basement.  How about…does it have a  cupboard in the kitchen where you could keep cans of food?”

Him:  “OH MY WORD!  YES!  That is too much of a coincidence!  I guess I really AM living in the same house you used to live in!”

Her:  That is sooooooo amazing!”

Him:  “Isn’t it!!!!!”

And while they were talking, I drove by at least another ten yellow houses on main street.  I wonder if they all have cupboards in the kitchen in which to keep canned foods???

I Wonder How My Name is Pronounced in Chinese

CoverTC_M

I am thrilled to announce that my book,The Apple Tree: Raising 5 Kids With Disabilities and Remaining Sane, has been produced by e-Book Dynasty into Chinese!  I am hoping to inspire Chinese parents to accept their children born with disabilities with love and enthusiasm, enabling the family to live a productive and happy life.  If you know anyone who reads Chinese, please pass this information along.  Likewise, if you know anyone who reads English, please pass along information on the English Version.

Gee!  I wonder what my name sounds like in Chinese???????

Tag Cloud

Follow

Get every new post delivered to your Inbox.

Join 10,009 other followers