Posts tagged ‘Aspergers’

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 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

Another Year, Another Memory

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(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

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…

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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Cracker Jacks and Oranges: My Kids Have the Best Dad!!!

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I suppose I am prejudiced, because I picked him, but Raymond is a wonderful dad!  I am sure when we dated and eventually married sooooooo many years ago, he didn’t have a clue about the roller coaster ride we were in for.  Sweet little marriage with 2.5 kids, growing old together, holding hands and walking on the beach….forget that!  As the parent or foster parent to 19 children, we have spent our marriage trying to have a positive, loving impact on the the children who have passed through or are in our lives.  I am the flakier, impulsive, eternally optimist slob.  He is the more grounded parent, making sure we have enough money to pay the bills, the house is somewhat clean, and the meals are on the table.  He is like a big kid himself with the children…enjoying playing with them and gently bopping them on their beans when he tells them he loves them. He despises the lime light, and has asked me never to write about him in my blog…hopefully he will forgive me for this post.

During a recent visit to the grocery store, he demonstrated everything I love about him:

The store we shopped at was one in which the discounts are great, but the ambiance is lacking, as are the shopping bags.  This was his domain, as he does the shopping weekly. This is his life…no frills, just get down to business.

Filling the cart with basics, (pasta, spaghetti sauce, bread, cheese, eggs and milk,) he purchased enough to provide for our home as well as for our 2 young adult children who are struggling financially. Because I do not generally go grocery shopping with him, I did not know he did that. His sense of support for his children extends into adulthood. Even though they are out of the house, he is still their “go to” person for flat tires and a listening ear. When he listens, he takes things more serious than I do…for me, there is always a silver lining.  I will try to cheer my child up,  make her/him happy.  However, sometimes children just want to bitch that sometimes life just SUCKS!  He listens, commiserates, and gives them that affirmation.

Because he was shopping with a budgeted amount,  I was playfully reprimanded more than once for putting something in the cart that was not absolutely necessary.  However, he DID justify the expense to put in one special thing for each of our children; Cracker Jacks for Steven, fresh oranges for Dinora,  pasta salad mix for Angel and Lay’s Salt and Vinegar chips for me to bring on the weekend visit with Marie. Most importantly, while getting in line at the cash register, he reached over into a bucket of flower bouquets and spent time picking out the best one for me.  (Yes, he DOES buy me flower every week.)  Practical, loving and romantic.  Isn’t he great?

After filling our cart at the grocery store, despite a long line at the cash register, Raymond was patient.  So patient, in fact, that he let a woman with only a few items pass in front of him.  Smiling, he said “Go ahead of me, please. I’m in no hurry”.  He chatted with the cashier, expressing genuine interest, and he assisted an elderly woman in carrying her groceries to the car. He cares about others, strangers, anyone in need. Is it any wonder he has been a great father to our children?

Any set of parents will experience difficulties of varying degrees.  Raising children with disabilities magnifies those difficulties.  It is a huge financial strain, and any thought of retiring and spending our days walking on the beach holding hands is for naught.  Potential retirement savings have been spent on the care of our children, funding therapists who do not take our insurance, taking time out of work when they are hospitalized, transportation to hospitals and therapists out of state, and other expenses many parents would never dream of having. Quality time between Raymond and myself can’t be spontaneous, but needs to be scheduled. (Rest assured that romance is alive and well with us!) Family and friends are often not our best cheerleaders. (Is that a polite way to put it?)  The challenges have been huge, but Raymond’s support has never been greater.  He has rolled with the punches, as though having a screaming child rescued by paramedics from the side of ferris wheel during a PTSD episode, having a child with twelve personalities (and trying to get along with all twelve), spending the whole day at Disney World in a quiet cove of trees while our son who is autistic collects bugs and worms, never knowing whether to buy girl clothes or boy clothes for your daughter are normal parts of parenthood. It’s is just normal family life to him. And I thank GOD for that…because I could never do this alone…

 

 

 

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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/

Miracle of Miracles: Turtle Tanks and Pony Tails

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My life raising kiddos has been full of excitement, as well as challenges. Steven has been my most difficult child to raise. The 7th child born to a woman who was mentally ill and addicted to crack cocaine and heroin, we took Steven home from the neonatal unit as soon as he was able to be released.  He was unbelievably “messed up”.  (Don’t you just love my knowledge of medical terms?)  He cried constantly, his whole body twitching.  Once I learned to swaddle him tightly in a baby blanket, keep the room dark, and talk in a whisper, he could tolerate my presence.  To touch him lightly would make him scream in pain, but cuddling him strongly, the deep pressure somehow calmed him.

Whether due to the drug exposure, or just because his birth mom was mentally ill, Steven exhibited extreme symptoms of ADHD, autism, bi-polar disorder, sensory integration deficit, obsessive compulsive disorder,severe anxiety disorder and learning disabilities.   (The whole concept of “diagnosis” is fraught with contradictions in my mind, as the “diagnosis” with which he was labeled were arbitrary, useless except for the benefit of getting special education services. We were fortunate to find a psychiatrist with vast knowledge of children born addicted to drugs, and he became our mentor.  Like myself, he does not not believe in labels, but in treating the symptoms.)

Steven has led an interesting life.  With his Asperger’s-like super knowledge of reptiles, and an uncanny natural love for children, he has shined in these areas.  He would be fascinated with the foster babies in our house, and his most favorite activity was sitting in the rocking chair by my side and rocking a little one.  He is, however,  unable to understand the concept of money, wear shirts with tags in them,  eat textured foods or adapt to an unexpected change in his schedule.  A strict, structured environment and predictable schedule has been the key to helping him manage every day life.

As any parent, I have thought a lot about his future and how he could possibly survive as an adult…

Then, a miracle happened…he found the perfect girlfriend to love him! Wonder of wonders!  Joy of joys!  I never thought is was possible, but the adage “there is someone for everyone” is true in his case!

Wonderfully patient Alexandra loves to keep everything controlled.  Where other young men would go running in the other direction at the sight of a young woman in strict control, for Steven, it was just what he needed!  She manages their time, his money, and their life together with strict precision.  JUST WHAT HE NEEDED!   They also have similar interests in reptiles, with Steven using his vast knowledge to ensure the safe upbringing of their many “pets”; three turtles in a tank, (recently caught in the lake behind our house, during one of their day long fishing adventures,) a small snake, a Chameleon and two lizards.  They are affectionate with each other, with Steven smiling brightly as she gives him deep bear hugs. The icing on the cake, as far as both of them are concerned, is her young daughter.  Again, where other young men would go running for cover, Steven goes running towards her sweet three year old daughter! He adores her!  This very large, 6 foot talk, husky, bi-racial, often scary looking young man who has an aversion to shaving, is like a loving angel with her daughter! He gently holds her hand to guide her when they are walking.  He plays Shutes and Ladders and Go Fish with her. He helps her pick out her clothes, (shirts without tags, of course!) Most amazingly, he has become her hair stylist, putting her hair up in braids and pony tails.  She loves showing off her new hair styles, proudly telling everyone that STEVEN did it, as they both stand there and beam happily!  She needed a dad to love, and Steven needed a family of his own. He adores Alexandra and she has a huge calming affect on him. And he has such a natural caring for children, and for Emily in particular, that it melts my heart every time I see the three of them together.  He LOVES them…an emotion I once thought he would never feel…as a boyfriend, (husband?), and father. Yes, he has found comfort in his own family…and has a content, structured, “normal” life.  Isn’t that amazing?????  Miracle of miracles!!

Is there no greater joy as a parent than seeing your child happy as an adult? Especially when you thought that may never happen…

 

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To read about Steven’s early childhood, 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/

Also, for just the cost of transportation, I am available to do presentations for your groups.   I can be funny on serious subjects…

Mother’s Day and Delayed Rewards

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Mother’s Day is a wonderful time to appreciate moms, step-moms, birth moms, adoptive moms, wanna be moms and women who love children. Bless you for making a difference in a child’s life! Don’t you get joy from seeing the joy in a laughing child, the shy smile of a child with twinkling eyes, and the serene look on their faces when they are sleeping?  Ahhhhhh……..what sweet little rewards of being with a child…

Most of us know, however, that it is VERY difficult to be a mom and sometimes the REAL rewards are far apart….

When my son Steven was in nursery school, it was a real challenge because of his autistic and ADHD problems. He had been born addicted to cocaine and heroine and his nervous system was “messed up” (my professional diagnosis.) Bringing him was a real challenge as he would kick and scream and cry, yet I did it because he could not hide out safely at home for his entire life with me vacuuming around him. At first, he would  spend most of the time in school hiding out in the “quiet tent”, playing with his plastic reptiles, sometimes soaking in the information from the teacher. Eventually, he sauntered out of his safe space to see what was going on.  He did not join the other children, but he was with them…a huge improvement.  Eventually, nursery school became normalized for him; part of his routine.  He would come home with his little projects; a paper flower, a painted snake, a play dough alligator.  I had learned not to make a “fuss” over these things, but to quietly tell him they were wonderful while his head dropped to his chest, eyes closed.  (He was not a child who could tolerate excitement of any kind.)  He survived two years in that classroom, and I wondered how he would act on “graduation day”, a celebration seemingly out of his tolerance level.  All of the children stood there in their little paper graduation caps, tassels dangling in front of their noses so they had to keep blowing them away.  All of the children except Steven.  The children sang a song, and thanked their moms and generally wowed the crowd with their antics.  All of the children except Steven.  The children walked in a nice, straight line to get their nursery school diplomas; all except Steven.  When all but one diploma had been handed out, the teacher walked over to where Steven was hiding under a chair, butt facing outwards. (If I had been smart, I would have sewed a smiley face on the butt of his pants, but, alas, I had been unrealistically hoping that he would join the other children in the graduation ceremony.)  The teacher bent down with the document and Steven’s  little hand reached out to grab it.  He quickly pulled the diploma out of sight.  Calm and cool under the seat, he had made it! Steven had graduated from nursery school without a tantrum, yelling or screaming.  He graduated in the manner he felt most comfortable, but graduate he did!  What a reward that was for me; I was a proud mother, indeed!

Diagnosed in elementary school with Dissociative Identity Disorder, Angel, has been very carefully placed in specialized classrooms.  Although intelligent and able to do grade level work, he frequently changes “parts”, (his word for his alternate personalities.)  His teachers and teacher aids, bless their souls, understand him well, and manage to educate him, even if it means repeating the same lesson because a different “part” was out that day, or giving his the test over because the “part” that studied for the test is not the “part” that took the test!  He has a baby part which necessitates him to just “veg out” in a large mushroom chair.  On those days, nothing was learned.  His condition has been kept top secret and no unnecessary teachers or others in the school know about it. Fortunately, he has been living a very “normal” life.  I have found one surprising benefit…he has a “Game Show Host” part.  I work with a recreational group of adults with disabilities, and every now and then we play Bingo or Family Feud. Angel, as have all of my children, regularly comes with me.  One day, he asked to be the moderator for Family Feud and his “performance” was beyond hilarious.  Usually a reserved child with groups, all of a sudden he channeled Richard Dawson! He went down the rows of “contestants”, gave each of them a peck on the cheek, and, while holding their hands in his, asked their names and a little about themselves.  The older women, who probably have not had much attention in their lives, giggled and smiled and blushed.  Then, Angel read each question with gusto, and made a “ding” noise when they got it right, and a loud buzzer noise if they got it wrong.  It was sooooooooooo funny because it was so out of character of the Angel that they knew.  This group of adult with disabilities, many of whom live alone on a minimum income with this once a week outing their only time out of their houses, were laughing hysterically that evening. Ever since then, they look forward to Family Feud and “Gameshow Host” Angel! What a reward for me to see Angel’s  give such joy to these wonderful people!

As a graduation present, my daughter, Dinora, and I took a trip back to her birth country in Guatemala.  She had done fundraising to assist with the opening of a soup kitchen in Antigua, and we were there for “opening day”.  We went shopping that morning, taking a little “putt putt” (2 wheeled open air taxi) into the village, giggling all the way as it bounced along. We bought flowers of all bright shapes and sizes, which stuck out of the putt putt on the way back, narrowly bopping passers by on the head. We spread the flowers out in front of  the  alter where a mass was to be said in honor of the opening of the facility. An overflowing crowd of people filled the make-shift pews, and it was a beautiful, emotional mass. Even though it was all in Spanish I seemed to understand every word, and I could certainly feel the emotion in the songs which the Indigenous Guatemalans sang.  After mass, people lined up for the food in their brightly colored clothing. There was my daughter, a young adult, behind the counter, dark hair pulled back into a pony tail, serving food with a beaming smile on her face showing dimples I never knew she had, (or perhaps she had never smiled so brightly.)  She was old enough and cared enough to give back something and help “her people” as she called them. I will never forget the sight of her…sweat on her brow, wiping her hands on her apron, making pleasant conversation in Spanish while smiling that amazing smile…   How could that sight NOT be a reward for a mom after years of raising a difficult teen?

Raising Marie has been the most difficult because of her many serious challenges.  When she came to us, she was street smart at the age of seven.(See post “All She did Was Scream and Say No! No! No!) She had no thought of danger and no social skills.  Although this may sound silly, one of my concerns was the fact that she would litter.  Get a drink; throw the bottle on the ground.  Have a piece of gum; throw the wrapper on the ground. Popsicle; stick thrown in the grass.    Repeatedly, I would have her pick it up and throw it away, explaining that we don’t litter in our family.  Marie could not have cared less…she did not want to be in our family anyway…  It took many months with us before she learned not to litter.  That’s why it shocked me when we were at the mall one day and she casually flicked the paper from her straw onto the ground.  My eyes widened, and just as I was about to ask her to pick it up, she bent down and picked it up, signing to me “I was just teasing you!  I know we don’t litter in this family!”  What a reward it was to hear her say that!  Finally, she felt part of our family!

My most favorite reward I saved for last.  For all of you parents, especially parents with children with disabilities, I will share that there has been no greater reward in my life than seeing my son, Francis, become a successful adult. Despite being legally blind, he has a college degree, is very successful in a job which he loves and through which he is benefitting others, and he recently married a great woman who not only loves him for the wonderful person that he is, but can also drive a car so he won’t have to take public transit to work any more!  There IS no greater reward for a parent; to know that the problems, fun, hard work, love, difficulties and dispersed joys of childhood have come together in a positive way. My son has officially “made it” to adulthood.  Now he can look forward to the rewards he will experience in raising his own children. Then I get the extra rewards of grandchildren!

To all of you mothers and others out there, Happy Mother’s Day!  Beyond the handmade cards, the flowers, the breakfasts and dinners out, and the gifts of the day, so many more rewards await you.  Sometimes you just have to be patient…

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