Posts tagged ‘ADHD’

Jiggles, Coat Hoods and Personal Space

images-2 Raising a child with a sensory disorder, whether autism or not, is always a challenge. When younger, Steven was the type of kid who would have a huge meltdown if there were tags in his shirts or seams in his socks. Meeting new people was too overwhelming, and a change in his schedule would send him into a tizzy. Holidays were disasters and birthday parties…forget it!
Not used to going out to restaurants because of Steven’s behavior, we threw all caution to the wind and went out to a dinner buffet for my 35th birthday. We chose a very large booth waaaaaaayyyyyy in the back of the restaurant, away from the noise and the crowds. Six year old Steven, who was still on a liquid diet due to sensory issues, curled up in a ball in the corner of the booth. He pulled his hood up over his head to block out surrounding activities and had a jiggle toy in each hand which kept his fingers busy. Giving him a wide berth of personal space, I was pleased as he sipped on his can of Ensure and was part of my birthday dinner. We talked in a soft, low tone and Steven even participated in the conversation from time to time.
It was a delightful night out…until SOMEONE told the staff that it was my birthday. (I suspect is was my youngest son, Angel, who was always selfishly delighted when Steven acted up, thus in his mind reassuring his place as the “good son”.) The staff came over with a lit candle on a cupcake, and sang Happy Birthday in out of sync voices. Steven immediately jerked up from his position, covered his ears and started to screech. He threw himself on the floor under the table and started banging his head against the wall. The happy moment was gone. I imagined people were looking at us as though we were the worst parents in the world! For the first and only time in my life as a mom, I emotionally stomped out of the restaurant in tears, bemoaning the fact that I couldn’t even have a normal, birthday dinner without accusing eyes watching as my husband carried our screaming child out. I was sure they thought he was a spoiled brat who couldn’t behave. Little did anyone know that he had been born to a homeless, schizophrenic mom addicted to heroin and cocaine and that he was so emotionally fragile in those early years that we could rarely leave the house. Little did anyone know that our family had worked hard to help him develop to the best of his abilities, working on his sensory issues so that he could fully participate in our family life to the best of his abilities and that it was a huge accomplishment that we were able to go out to the restaurant in the first place.
Both Steven and I calmed down quickly in the car and life returned to normal. Little did anyone know how deep our love and acceptance was for this child and for all of the issues that came with him and for all of the issues which were to come.

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For more stories about Steven’s 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

The ABCs of ADHD Redux

I wrote this post more than five years ago. These words were expressed when I was working full time and trying to raise 2 kiddos with ADHD, 2 with ADD, and 2 with RAD. I have cooled down a bit, and things have improved immensely. (I know many people are anti-medication for good reasons, but for me, my children would not have survived with out it.) I have nostalgia for several of the comments, and say “GOOD RIDDANCE” to the things I don’t have to worry about anymore!
And so, without further ado, The ABCs of ADHD redux!

I’ve read the articles and books on ADHD. I know the discipline methods, positive reinforcement, rewards and time outs, the methods of Ross Green, sensory diets, nutritional preferences and the medications that work best. But I also know the realities of ADHD. In real life terms, the ABCs of ADHD/ADD are:

Attention! Always on alert for dangerous situations due to impulsive behaviors, such as running across streets without looking, grabbing a butcher knife to cut the end off a banana, running up the down escalator, and grabbing the dog or any other animal roughly and the dog (or other animal) retaliating by biting (or scratching.)

Be careful! Be careful! Be careful” is the parent mantra.

Climbing climbing climbing: out of the crib at age 15 months, out of the bedroom window when a teenager, on rock walls and curbstones and couches.

Don’t touch that! Don’t do that! Don’t hit her! Don’t pull that! Don’t eat that! Don’t hurt it! Don’t break it!

Exhausted parents trying their best to keep up.

Friendships are difficult.

Go! Go! Go! They’re always on the go!

Helpless parents, unable to control their child’s behavior, especially embarrassing in the grocery store under the staring eyes of others, judging them.

If only he’d… If only she’d…. Parents dream for a different lifestyle.

Jumping Bean: he goes here and there from friend to friend to friend, never staying long enough to establish a real friendship.

Kitchen walls are written on, cupboard doors have nicks in them, curtains are ripped, bedrooms are messy.

LOVE. Parents give unconditional love, but the behavior doesn’t change because the ADHD remains…

Medication? Medication? Medication? Should I use it or should I not?

Not paying attention in school so schoolwork suffers: not paying attention for homework, so it’s a nightly fight: not paying attention to other’s feelings, so keeping friends is difficult.

Overload happens easily and tantrums result. Keep it quiet. Keep it simple. Keep it under stimulated for peace.

Psychiatrists have become my best friends!

Questions! Questions from them all the time! Especially hard to escape when you are stuck riding in the car together.

Rewards for good behaviors; cuddles, high 5s, stickers, ice cream, Playstation, tv.

Self-esteem is low; it seems as though parent’s and teacher’s patience is limited; always the troublemaker, always in trouble.

Time-outs in the seat till we’re blue in the face. All the time spent in time-outs would add up to a year in the life.

Understanding is needed from parents, family, friends and teachers; understanding is often in short supply.

Very draining on all, child and adults.

Whining, whining, whining until parent’s ears hurt.

X-rays, CAT Scans and emergency room visits: active behavior results in injuries.

YIKES! What has he done NOW?!?!

Zest for life would be a polite way of putting it…

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To read more about those early years, struggling to raise 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

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…

The Hidden Joy in a Frost Heave

“frost heave
n. New England
A section of raised pavement caused by the expansion of freezing water immediately under the road.”

Hubby and I took a quick weekend respite trip to our little cottage in New Hampshire. Being the type of person who rebels against her upbringing, I HATE to ride in a car. (My childhood consisted of regular trips across and around and up and down the country for months at a time.) My solution is to have a nap while Hubby drives, which not only gets me out of the boring tedium of the drive, but also leaves me well rested for the festivities to come. Sprawled out comfortably in the back seat, pillow under my head for comfort, pillow over my head by habit, and a luxuriously fluffy, velour blanket in a the manly color of army green covering every inch of my body, I fell asleep. In the deepest moments of sleep, I was jolted awake when flung into the air. Straight up. Almost hitting the ceiling. Squealing so loud with surprise that I almost peed my pants. But what came next was sheer joy…like the feeling when you reach the top of a roller coaster and you plunge down that deep hill. Weightlessness. The feeling of your stomach coming up into your throat. The quickening of your pulse as you experience the joy of such an adventure. In my case, an unexpected, three second joy! Followed by the hard thump of my body as it hit the seat again. Ah, life is so full of such wonderful surprises if you just know where to look for them!

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To read more about my interesting, amazing 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

The Dance of the Snake Goddess Redux

snake

I apologize for repeating this post from 2011, but it is one of my favorites, and a memory that is brought to mind on those few occasions that i have to go to court for my children and I see this particular lawyer there…and I always giggle…

A very conservative lawyer friend had a very conservative lawyer wife who had taken up belly dancing.  She and 2 friends were so skilled in this talent that they were chosen to be performers for a large audience for First Night, the annual New Year’s Eve celebration in the city.  For an added “twist” to their act, my lawyer friend asked if his wife could borrow one of my son’s 5 foot long boa constrictors for their dance.  I had plenty of reservations, but I said okay. (It is always good to keep a lawyer friend happy because you never know when you will need a lawyer’s help.)  The ladies came to our house, and practiced with the snake while my son, Steven, who is very familiar with snakes, supervised.  The practice went very well, and the ladies excitedly decided to bill their act as the “The Dance of the Snake Goddesses.”

Well, New Year’s Eve came and I reminded Steven that we had to take the snake to the performance hall for the act.  Steven, who has Asperger’s and an anxiety disorder, was mortified!  There was no way HE was going to go to a large hall where there were a lot of people!  He handed me a pillowcase to put the snake in, and a bottle of alcohol “in case it bit someone”. He promptly took off on his bike peddling away to destinations unknown to me, (but far away from  First Night appearance.)  I started to panic!  These excited dancers were billed as the “The Dance of the Snake Goddesses” and they would have no snake!  Feeling extremely obligated to provide them with a snake, I decided to bring the it myself.  I had not minded the snakes when they were locked in the glass tanks, but somehow I was going to have to get up the nerve to actually take the snake out and put it in the pillowcase.  My hands were shaking as I undid the lock and took the cover off of the tank.   It looked docile enough, just lying there.  I reached in and managed to push it into the pillowcase using a long sleeved pot holder, proud of myself for not having to touch it.  Maybe I’d be okay! I tentatively carried the pillowcase to the living room, but I had miscalculated by not securing the top of it.  The snake’s head popped out, I pushed it back down.  It popped out again, and I pushed it down again.  This time it was stronger and its head came our farther.  When I tried to push it back in, it wiggle away from me and the whole snake came slithering out of the bag, which I promptly dropped.  There, on the floor of our living room, was a slithering 5 foot long snake!  I screamed.  My husband came to see what was going on, and he jumped up on the couch and screamed.  Even though I was shaking and my first instinct was to smash the thing over the head with a broom, I remembered  my commitment to our lawyer friends.  I gathered up my courage and, using the broom gently, I nudged it back into the pillowcase, this time immediately tying the top into a knot.

I was still shaking from this experience as I drove to the city with the wriggling pillowcase on the seat next to me.  I was feeling tremendous relief that I had at least caught it and was on my way to the performance. I even felt a little sorry for it, and turned the heat all the way up in my car so it could be warm.  (It had started to snow outside, which would mean there would be a larger than usual audience for an inside performance as the outside First Night performances would involved standing around in wet snow.  Great!  A bigger audience for what was sure to be a Snake Goddess fiasco!)

When we got near the theater, I put the pillowcase inside my coat to keep it warm. (MY I was brave!)  There was a line around the building waiting to see the performance.  I went to the head of the line, and quietly said to the guard at the door, “I have the snake for the performance.”  In his loudest voice, he parted the crowd by saying “Make way for the snake handler.  Make way for the snake handler!”  I wanted to hide!  As a middle aged, shaking, nervous, dowdy woman, I no more resembled a snake handler than a chipmunk would resemble Santa Clause.

I managed to get back stage with the snake and the belly dancers were very excited.  They carefully took him (her?  I couldn’t tell the difference,) out of the bag and began to practice.  By now I was shaking so badly that my stomach was in knots.  I was holding the bottle of alcohol (“in case it bit someone”.)  I was on the verge of tears, both from relief that I’d delivered the snake in one piece, but also fear that it would bite and there would be blood and screams and lawsuits.

The audience in the large theater was packed, standing room only.  The music for the dancers began.  They dramatically began the act hidden behind veils, with the snake on one woman with the head at one hand, draped across her back, and the tail on the other hand.  They did a dramatic dance, dropping the veils at different intervals for the audience to get a glimpse of the snake.  I could hear  “ooooh”  and “aaaaaah” from the audience.  I was hoping the snake wasn’t going to slither down and into the audience causing mass panic,  emptying the audience out into the street, or, worse yet, go around biting audience members with me following along with my bottle of alcohol. (Then I’d really need a lawyer for the lawsuits!)

Then something strange happened. The dancers dropped their veils, and the snake actually seemed to join in the dance.  Soon its head was wriggling in time to the music, its tail was swaying around, and it seemed to be having a grand old time!  It began to slither in time to the music (a pure coincidence I’m sure,) from one dancer to the next.  It was an amazing sight, the graceful gyrating dancers and the graceful gyrating snake, all moving in time to the music.  Mesmerizing. Amazing.  The act finished to a standing ovation, and darn it if it didn’t seem as though the snake bowed his head in response to the clapping from the audience.

After the show, the dancers gave the snake a few affectionate pats and back into the pillowcase it went.  I tied it in a knot, put it under my coat, and carried it back to the car.  I felt as though I was going to cry, but this time it was tears of relief.  I don’t know how I get myself into these situations, but, again, I’d come through it unscathed, with a little more respect for the reptile in the pillowcase next to me!

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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

Another Year, Another Memory

be-more-positive-af
(cartoon reprinted from Readers Digest. Two angels are standing on Cloud 8 with the caption “Well yes, I’m happy. But I could be happier…) Don’t let this be you!

A new year has begun! Whoopee! I am so excited to see what great things the new year brings! I only have two annual New Year’s resolutions:
Resolution #1: I think back on last year, and am grateful for all of the wonderful little things that worked out well.

*Found out about Orange Leaf yogurt place where I could get healthy sugar free, non fat yogurt with my choice of toppings, m&ms, hot fudge (yum!), gummy bears, snickers and all the whipped cream I can fit!

*My daughter, Marie, has finally found a counselor trained in trauma and abuse who is fluent in American Sign Language. After all these years! FINALLY she is able to make some progress in this area. As her mom, I have been the only one she has confided in, and it will be nice to share that weight with a professional.

*I loved watching The Good Wife! And Storage Wars! And Survivor!

*I lost a pound and a half. Not quite my goal of 30 pounds, but at least it is in the right direction!

*I have two new grandchildren on the way with a whole lifetime to enjoy them. (Long live nana!)

*Another year accident free…where’s my check from Allstate?

*Another year major illness free! (The hubby had a bout with colon cancer a few years ago, but has been fine ever since surgery because it was caught early.)

*My daughter, Dinora, has a great new job, a fiance, and a cute little house.

*My son, Steven, (who has autism and ADHD,) has a wonderful new fiancee whose OCD keeps things structured and in place for him, stabilizing his disability. (There IS someone for everyone!)

*During several great movies, (The Butler, Gravity, and all of the Pixar films,) I ate plenty of buttered popcorn and jelly bellies. (Ahhhhh! May be the reason I didn’t loose more weight.)

*My son, Angel, who has Dissociative Identity Disorder, has miraculously made it through high school without seriously harming anyone. (Except for the refrigerator he overturned on a teacher…which turned out to be the teacher’s “fault”. In Angel’s IEP was the stipulation that he cannot be yelled at lest the “angry part”, over which he has no control or memory, comes out to protect him, a reflex reaction.) Life with Angel is quite interesting…

*Our cars, both over 8 years old and with more than 150,000 miles each, are still running and getting us places.

*My son, Francis, who, despite his blindness, is still making boatloads of money in the Silicon Valley computer industry. (On less child I have to support.)

*All in all, another successful year with more ups than downs.

Resolution #2: I look forward to the coming year with optimism and enjoyment. Hopefully it will be another successful year with more ups and downs, and I will make memories to put on my list for #1 next year!

Hopefully, your life will also have joy, happiness, love, and some interesting foods to eat!

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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

The Truth about Reactive Attachment Disorder

I witnessed a conversation with the sister of a boy who had been adopted at the age of 2 years old after being abused by his biological parents. As an adult “he has always been in trouble with the law and has been in jail.” Upon hearing this, a deep sorrow enveloped me. I have such empathy for that child, having three of my own adopted at a later age. It was with a sweet naiveté that I had them join our family, believing that love can cure all. Despite our family’s best efforts, love did NOT cure all. To pretend that it did does a disservice to all of those families living with similar children. As brightly as I may portray our family, (and they ARE wonderful children whom I have never regretted adopting,) they have serious disabilities when it comes to social norms. They have reactive attachment disorder.
To quote from Wikipedia, “RAD arises from a failure to form normal attachments to primary caregivers in early childhood. Such a failure could result from severe early experiences of neglect, abuse, abrupt separation from caregivers between the ages of six months and three years, frequent change of caregivers, or a lack of caregiver responsiveness to a child’s communicative efforts. The AACAP guidelines state that children with reactive attachment disorder are presumed to have grossly disturbed internal models for relating to others”
I have worked hard to form attachments to my three youngest children, and, while I like to think that I am a “normal” mom to them, I have to admit that they may have difficulty controlling lying without remorse, stealing just because they want something, or acting out if they do not “get their way”. My son who has autism and RAD has always acted out, kicking the occasional hole in the wall or breaking a window. Such behavior can be tolerated as a child, but when that child becomes a young adult, such behavior is considered “domestic abuse” and “vandalism”. My youngest daughter with RAD sometimes would see something she likes in Walmart and slip it into her pocket, thus necessitating a trip to the manager to give it back. I like to think that such life lessons have sunk in, but I cannot guarantee that, as a adult, she wouldn’t resume just taking things she wants. My kiddos with RAD are chronic liars. I can tell they are lying by the vast amount of details in their stories. They didn’t just lose a school book on the way home, a masked man followed them all the way home, hid out behind the maple tree, jumped out at them when a car drove by and stole their book to use as material to start their fire. Their stories, which they steadfastly stick with, are creative and imaginative and complete lies, and lying is a typical behavior of a child with RAD.
I am convinced that their brains are wired differently. As infants and toddlers, they were not able to form emotional attachments with caregivers in order to feel secure. When their little brains were forming, and those energy cells which would turn into concepts of how the world works, theirs determined they could not count on anyone but themselves. They can be self-centered, unfazed by conventional ideas of right and wrong, and often willing to do anything to get what they want.
Dealing with such children is a life long challenge. I have done a fair job of instilling right and wrong in my children, not because they really believe in right and wrong but because, by habit, that is how we behave in our family. Yes, they love me, but let another “parent” come by who offers them a kitten, and their love will quickly switch. (True story…my daughter almost went to live with a couple who promised her a kitten!) Having the social skills to have real friends eludes them. RAD is a devastating disability which affects all aspects of their lives.
My heart goes out to all of those children out there who were unloved in their early years. It is NOT something they can just “get over”. I see people on tv who are arrested for this and that, and I hear their stories. 9 times out of 10, they were abused or unloved as children. I am convinced the loss of that initial security forever causes a permanent rift in the psyche that is contrary to the “norm”. To expect them not to be affected is naive.
Consequentially, a large percentage of people in prison were abused or neglected as young children, and I grieve their loss of “normal” lives, forever damned to seclusion from society as the result of their initial inability to form secure relationships in a loving family.
I apologize…this post is so unlike me, but I felt the need to discuss the issue.
Please join me in listening to my favorite song by clicking on the “Song by JJ Heller”. It is a song that addresses this very issue with a love that I feel in my heart. I hope you feel it also…

If you have time, please listen to my favorite song, “Love Me”, by JJ Heller. I have included the words. It never ceases to bring tears to my eyes…

Song by JJ Heller

“Love Me”

He cries in the corner where nobody sees
He’s the kid with the story no one would believe
He prays every night, “Dear God won’t you please
Could you send someone here who will love me?”

Who will love me for me
Not for what I have done or what I will become
Who will love me for me
‘Cause nobody has shown me what love
What love really means

Her office is shrinking a little each day
She’s the woman whose husband has run away
She’ll go to the gym after working today
Maybe if she was thinner
Then he would’ve stayed
And she says:

Who will love me for me?
Not for what I have done or what I will become
Who will love me for me?
‘Cause nobody has shown me what love, what love really means

He’s waiting to die as he sits all alone
He’s a man in a cell who regrets what he’s done
He utters a cry from the depths of his soul
“Oh Lord, forgive me, I want to go home”

Then he heard a voice somewhere deep inside
And it said
“I know you’ve murdered and I know you’ve lied
I have watched you suffer all of your life
And now that you’ll listen, I’ll tell you that I…”

I will love you for you
Not for what you have done or what you will become
I will love you for you
I will give you the love
The love that you never knew

Please note: links to purchase my book:

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

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

Nook/Barns and Noble

And The Paper Creeped out the Bottom of the Door

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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.

I Don’t Think Animals Kiss…

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One day several years ago, many months after Marie came to live with us, my husband, in a good mood, came into the kitchen, swooped me backwards, and gave me a passionate kiss.  When we had finished, I noticed Marie standing there, gaping, eyes wide, with a shocked look on her face.

“What was THAT????’ she asked in American Sign Language.

“A kiss,” I told her.

“No, no”, she signed back, “a kiss is a little peck on the lips” she said as she came over and demonstrated one on the dog. (Heaven knows a teenager would never kiss their MOTHER!)

“There is a different kind of kiss when you really love someone like your husband” I said.

“That is amazing!  How did you LEARN to do that? ” she asked plaintively.

“You don’t learn it, you just feel it.  It is natural when you love someone,” I explained to her.

“Well,” she huffed, “I’m going to wait until I’m 17 to do that,” she said as I said a silent prayer to myself that I should be so lucky for her to wait that long!

I laughed inwardly at her innocence, this worldly child who, because of her child abuse knew the mechanics of sex more than anyone her age.  I doubted she ever saw anyone really “in love” before, and she had never seen anyone kiss passionately, which really surprised me.  The more I thought about it, though, I realized she hadn’t been exposed to it in her young life and the only other way she might know would be from watching television.  Because of her deafness and lack of early education,  she had a low reading level and was not able to understand the captioning on tv, so she did not generally watch comedy or drama series.  Her favorite tv channel was (and still is,)  the Animal Planet where captioning is not really needed to enjoy the shows.  What wonderfully active lives those animals live!  Exotic lives!  Interesting lives!  Dangerous lives!  Sometimes romantic lives; nuzzle noses, lick, bite, cuddle, hug, dance and flap their wings as a means of showing affection.  But a long, romantic, “mushy” kiss? I think not….Marie had to learn that from her parents…

 

 

 

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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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