Archive for the ‘autistic’ Category

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.

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

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 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

Heat Wave? What Heat Wave?

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Like most of the nation, we have been experiencing a heat wave; temperatures in the 90s and 100s for more than a week.  This could have wrecked havoc in the recreational program for children with disabilities I have been coordinating, as the lovely van of previous posts is our mode of transportation.  Said van does not have air conditioning, or, should I say, any little amount of cool air that would have come out of the sickly air conditioner is quickly usurped by vast, oppressive hot air lingering in the air and not felt beyond the driver.

So, I like to play a little game called “Heat Wave?  What Heat Wave”.  Firstly, before I leave work for the evening, I freeze water bags half full.  (At the Dollar Store I purchase cute, brightly colored little bags which one fills with water. With its carabiner hook, they easily attach to a child’s belt loop.) In the morning, using my intuitive powers of observation, I do not park it in a SHADY spot because at the time of the day we will be leaving, that spot will be sunny.  I calculate where the sun will be and which spots WILL be shady, and I park there.  This enables our little group to later enter a van that has not been cooking in the sun.  I pass out the water bags filled to the top, and attach them to each of the kiddos.  (It is easy for them to find if it is attached!)  Then, as the van commences transportation, which, by necessity, includes entering the sunny zone of the freeways,the anti-heat games begin…

* Playing the “Hot Potato” game…(HOT potato…get it?) students pass around this musical icon.  The original goal is the person who is holding the “hot potato” when the music stops is “out” of the game.  In our game, the person who  is holding the “hot potato” when the music stops gets sprayed with water from a spray bottle!  Now, instead of quickly forcing the item onto the next person so as not to be out, the students take their time passing it, hoping to “win” a spray.  (The seat configuration of the van, in a rectangle, facing each other, is very conducive to this particular rendition of the game.)  This not only cools everyone off, but is also a fun game to play, with lots of laughing and joyful sounds!

* Dancing to the beat of the music, played loudly.  For those who know me and my pension for dancing in the van, this is just an extension of this specialty. The children all bounce and bop, clap and cheer along to their favorite music.  (I, of course, as the driver, save my van dancing for in private, instead choosing to pay attention to driving this precious cargo.)  This creative, exercise inducing activity keeps the kiddos happy and entertained.  After a few songs, as the sweat drenches down their little brows, they take a drink of that ice cold water, and ask for more music, and to TURN IT UP LOUDER!

Good ole fashion water gun play.  Yes, I let them use water guns; small ones that don’t shoot a heavy stream of water.  I keep about 20 filled ones on board, so that when one gun is empty, it can be passed down for another one. (Lest you think the water must get all over the van, need I remind you that it is 100 degrees and any water turns into steam…)

The finale of the trip is arriving at our air conditioned destination, be it the pool, the library, the movies or the mall. Just the sight of the destination is enough to make everyone forget the heat, and to file off the van with great expectations of what is to come.  Of course, after I drop them off, I still have to look for a parking spot in the place where there WILL BE no sun…let’s see…how long will we be there?

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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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“It Smells Like Flowers and Sunshine”

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Working this summer running an educational/recreational program for kiddos with disabilities, I have been giving my good ole, 12 passenger van with a wheelchair lift a run for its money.  Surprisingly, despite numerous past mechanical difficulties, it has become a war horse for transporting us throughout the state to many wonderful adventures!  Because it is an industrial type van, it supplies the children with a lot of extra bounces, creaking, twists and turns.  (It is good thing they are all snapped down into booster seats and seat belts or by now I would have many little dents in the ceiling from their bouncing heads.)  They laugh and screech and go “weeeeeeeeee” as though they are on a ride at an amusement park. (I dare say, some of the children have never experienced such excitement…)

Over the weeks, I have become somewhat lax in van cleanliness…food wrappers, discarded art projects, broken recreational items (such as water guns and deflated balls,) and, EWWWWWW, old clothing left by the children, litter the floor.  I KNOW it is not proper, but, somehow, I am so busy with the program arrangements, supervising the children and driving them back and forth from their homes that at the end of my 12 hour day, that I am too pooped to do anything but sit in my lounge chair at home and watch Judge Judy.  I did the only thing I could do under the circumstances…purchased a couple of cute, little, purple, sweet smelling air fresheners for the van.

The day after this ingenious addition, the children filed on one by one for a trip to the aquarium.  Many of them commented on the smell, including one little girl who is blind who remarked “Do you have flowers in the van?  It smells beautiful, like flowers and sunshine!”  Thus proving to me that those Febreeze commercials where people are put into smelly, messy enclosures really DO smell only the Febreeze!

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