Posts tagged ‘autism’

To Be Joyful with So Little

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When Dinora and I visited her birth place, Guatemala, we spent some time with moms who were working picking coffee beans. They toil all day while their children play nearby. Prepared for this visit, Dinora had a backpack full of little toys; small dolls, Matchbox cars, bouncy balls, toy rings, and so forth. (Above is a picture of a little girl clutching a small ring in her hand, so pleased with her gift.) The children were amazingly polite. Each child would gather around Dinora as she gave them each a small toy. Taking it delightfully appreciative into their little hands, they smiled shyly and stepped back to leave room for others to come forward. They didn’t crowd her. They didn’t ask for more, more, more. They reveled in the joy of that tiny toy! Sheer happiness!

It made me realize that more and expensive and better isn’t the right Christmas concept for children as they may not fully appreciate their multitude of blessings. If only they could experience the happiness on Christmas that those children among the coffee bean trees exhibited. Pure joy! What a concept!

As Peaceful as Falling Snow

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My husband and I have the tradition of going to our little cabin in NH at least once a month.  We have had a real challenge raising Marie and Steven lately, so this weekend was especially timely.  Right now I am sitting in a comfy chair, feet up, air warm around me, and a cup of hot chocolate with lots of marshmallows sitting on the table next to me, adding steam to the air.  I am smiling thinking of how this cabin has served us well over the years.

When Steven came to live with us, his obsessive compulsive disorder, extreme hyperactivity and severe sensory integration difficulties were not conducive to family vacations in hotels and such. My father, who adored Steven and saw many of my brother’s mental health traits in him, generously purchased this little vacation home.  He himself had always wanted a house in New Hampshire, and he was proud to be able to give me something that would last a lifetime.  The cabin is full of his carvings, including a sign that says “RELAX!!!”  It might be a reminder to actually relax, except on the sign is a carved eagle with a beak so sharp and long and eyes so wildly life like that it kind of scares me instead.  Fortunately, I have learned to look on this sign with love, a reminder of my dad and his “quirky ways”.

On the wall of the cabin are pictures of the kiddos through the years; Francis water skiing, Dinora standing gloriously in front of Mount Washington, Steven holding up his bucket y.of frogs, one frog in his hand thrust towards the camera looking huge next to his tiny body, Andy wildly waving a sparkler on the Fourth of July and Marie holding up a huge fish she caught ice fishing, almost too heavy for her to hold.  There are other pictures of all of us together, or the kiddos playing in the sand at the beach, cuddling on the deck of the cabin, or hiking in the woods.  The pictures are a nice reminder that we have been parents for a long time, and our children have led full and happy lives with us.

While staying in the cabin is reminiscent, it also serves as a retreat for me and my husband.  It is very quiet here.  No telephone reception. No multitude of cable tv channels.  No internet.  No neighbors. No housework.   No stress.

The weekend is a wonderful interlude to our busy lives, an interlude where we are free to nap all day, laugh at silly things, eat  wonderful concoctions Raymond dreams up, (last night it was shrimp rolled in bacon and topped with cheese,) and spend lots of time loving each other.  While we are loving when at home, we go into overdrive in the secluded cabin. No neighbors can hear our screeching laughs.   No children can walk in on our sexual escapades, and no one cares if I walk around bra-less. We are “free and easy”, and the stress just melts away…

Today, the day we will be packing up to go home, I am sitting here writing this, content watching the snow slowly falling outside; soft, fluffy, amazingly beautiful snow!  Peace surrounds me now.  I am well rested and have laughed and loved my stress away, and I am ready to go home to face whatever challenges may come my way.  Bring it on!

All It Took was a Few Daisies

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Things have not been going so well lately. Marie has been in the hospital for trying to swallow a box of staples during a PTSD episode. (The pain of the memories was just too much.) The staples, thankfully, passed through and did no damage, but her recovery from the incident has not passed so easily. She is sad and shaky as she works through her most recent memory, that of a “john” pulling a gun on her mother. She remembers hiding under the bed and watching in terror as his footsteps thumped by, sure he would find her and kill her at any minute.

Steven has had a similar fate. As a young adult, he chose not to take his medication anymore. He didn’t like it because it made him feel “sleepy”…instead he is hyper, agitated, argumentative, obsessed and out of control. When you have a mental illness when you are a child, you are hospitalized and given great care. When the same thing happens when you are an adult, you are arrested for domestic violence and thrown in jail. Not the best situation, and extremely difficult for a parent to handle. (Yes, I am being selfish thinking of how this affects me.) Maybe when he is released he will agree to take his medication again, medication which has enabled him to live a full and relatively happy life. Medication which has calmed his OCD and aggression. Medication which has smoothed out the wrinkles in his brain created by in utero exposure to cocaine, heroine and alcohol. Medication which has made our family life “normal”.

Yesterday, (Thanksgiving) was a solemn day for our family, missing two of our beloved children. In preparation for the day, I had cleaned the house as my husband had shopped and prepared the food. I had hoped to get to the store for a floral centerpiece to add some happiness to our table, but time just didn’t allow. Setting the table, I felt sad, abandoned, and empty inside, unfamiliar feelings for me. Just as I was allowing the despair to set in, there was a knock at my front door. There stood a middle aged woman dressed in a neat, black coat. I didn’t recognize her at first, but as soon as she introduced herself, I remembered that she had a child in the same class as Steven ten years ago. I forced a smile and asked her how she was. She had been thinking of me, she said. She remembered me from all those years ago and she remembered the challenges our children faced. She had made me a beautiful floral centerpiece for our Thanksgiving table! She said she knows how hard it is for her to raise one child with mental illness, and that she has admiration for me raising several. I thanked her and held back tears as I hugged her tight.

This amazing centerpiece is filled with bright orange mums, cheery yellow daisies, and red roses, whimsically arranged with a big Thanksgiving Day bow. Looking at it, I can’t help but smile. It is beautiful! It is hopeful! It is joyful! It was just what I needed to get me out of my despair and realize that this, too, shall pass. And the reminder came from a woman who was almost a stranger to me. I am so thankful for the timing of her thoughts of me.

“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

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 Dance of the Snake Goddess Redux

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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

Give a Pat on the Back to Parents of Kids who are Autistic!

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Parents of children with autism will never tell you that raising their child is easy…it’s not! I joke around, look for the silver lining, take things in stride, and present a smiley face to the world. However, raising my son, Steven, has been, and continues to be, an extremely difficult parenting challenge.

Memories of how hard it has been flooded back to me when my hubby and I went away for a romantic weekend at our little cabin in the woods of New Hampshire. With the sub zero weather whirling around outside, we were sitting on the couch sipping hot chocolate with lots of tiny, melting marshmallows. (Okay, maybe HE had some Kailua in his, but mine really DID just have marshmallows!) As the heat rose up from the small grate on the floor, I was transported back to the time when we first purchased the cabin. Because Steven had such severe sensory issues and taking him to a regular hotel for a regular family vacation would have caused a regular catastrophe, we sought out a calm location to which he could become accustomed. Thus, the family vacation cabin was born! He was only about a year old when we bought it, and he soon adapted well…he continued to wake at 4 in the morning to run around the house (which was carefully modified for safety.) He continued to refuse to eat any textured food, subsisting on cans of Chocolate Ensure. He continued to hide under the bed if any company came to visit, or if it was too windy out, or if the clock ticked too loudly or for a variety of other reasons known only to him. He would curl up in a ball under the kitchen table if there was too much noise, or light, or if he just plain felt like it. However, he also had the little pond behind the house where he could catch frogs, turtles and snakes for hours…HIS idea of a great vacation! In other words, he behaved just like he did at home! Our family vacation home was successful!

We enjoyed, and continue to enjoy, many years of quiet, restful activities on this little house in the woods. The only reminder of a behavior to which we could never accommodate… Steven’s self-abusive “episodes”…is a scar on his forehead. It has faded over the years and resembles a tiny tic-tac-toe board.

Last weekend, sitting on the couch enjoying my hot chocolate, I glanced over at the heating grate and shuddered, remembering the one time he was so out of control that he banged his head on the heating grate before we could restrain him. A hard, deliberate bang on the only dangerous spot in the house. It was a reminder that as hard as we tried to have a “regular” life with Steven, we could not always keep him safe…

That is not to say that this is a complaint. It’s more of an observation. Raising kiddos who are autistic changes a family’s life forever. If you know someone who has an autistic child, give them a pat on the back. They probably haven’t had an easy life…

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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

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