Coach E on Autism

Being Miracle Minded

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Neal’s Thoughts on Work, Gardening, G-d

January 27th, 2013 · Uncategorized

I work at camp J C A Shalom in Malibu every Thursday.  I water trees, plants, and herbs in their organic garden. I pick ripe lemons, oranges, and olives.  I use hay to insulate the trees in the winter. It makes me happy to work.

I feel connected to G-d when I am working in nature. I see G-d’s work in the earth and want to feel it in my hands. When I am in the garden and working, I feel G-d’s call, and I answer him by doing the work he started. When G-d was creating the earth He created plants on the third day. I am continuing G-d’s work when working at J C A.

Everyone says I am a simple guy and really, I am. I wish everyone was as simple as me. The world would be a much less complicated place if we all tried to do G-d’s work and not the work we convince ourselves we ought to do.

When watering trees, I think about giving back to the earth what she gives to me and to the earth.

Earth is like a giant circle.

It’s a give and take, however, not enough people give.

This year I challenge everyone to give more to earth’s giant circle and take less. Be more aligned with G-d’s vision and see how much you grow as a result.

Neal Katz, January 2013

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Barns Burnt Down – Now I See The Moon

April 5th, 2011 · Inspirational

“Barn’s burnt down — now I can see the moon.”

This evocative Haiku written by Mizuta Masahide, a 17th century Japanese poet and samurai, has spoken to me deeply since I adopted my treasured son Neal, who has taught me the gifts of leading a purpose-driven life. I aspire each day to be of service to those, like my family, who live with autism and “special needs.” In fact, I founded The Miracle Project so others could come to “see the moon” each day by being Miracle Minded™.

My heart is full as I witness the courage, grace, cooperation and compassion at the core of our Japanese brothers and sisters’ culture.

In this unimaginable moment of crisis, we hear nothing about looting food or material goods in order to survive, but rather, we learn one story after another about Japanese citizens’ instinct to share each bit of food, shelter and clothing with in those in their midst, be they family, stranger, elder or infirmed.

How extraordinary to witness sharing, compassion, generosity, connection, understanding, patience, grace and unconditional love in the most desperate of times. What a blessing to learn of the boundlessness of the human spirit in moments of scarcity as well as abundance.

When disaster strikes and we are brought to our knees, I believe we come to know who we are and what we are made of. In that very moment of revelation, can we mindfully commit to living the rest of our lives from this place of truth, compassion, character and authentic connection to those in our midst, locally and globally?

How can we decide to “see the moon” without having to have our modern day structures fall? We have the opportunity to choose to build more bridges than walls this year, towards creating stronger, more educated and loving communities.

Shall we tell our children the stories of neighbor helping neighbor so they remember that, in the midst of disaster, we can be the one to make a difference to another being?

Perhaps this teachable moment invites the opportunity to understand that each and all of us have “special needs,” and by honoring and understanding our own and those of our others, we can open our minds and hearts and be our best/highest selves.

By having an open heart, we can live fully, joyfully, richly and meaningfully and inspire others to do the same, thereby building the kind of communities that thrive in good times and bad, that support children of all circumstance and abilities, that embrace the elderly and those in need.

I love the expression, “Character is what happens when no one is looking.” Friends in Japan, we are looking today and we are so moved by who you are — your instinct to help others through these difficult hours and days.

We are with you for the journey. Today you have special needs; tomorrow, we may have the same. In a second, we can all have special needs. We are all connected. Now is the time to build compassion for people of all abilities.

No matter where we live on earth, there is a moon. Blessings to each and all.

With love,
Elaine

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7 Gift Ideas to Bring to a Family with Autism

December 20th, 2010 · Inspirational

7 Gifts to Bring to a Family with Autism
Only a few more days until the Big Day, and still don’t know what to give your neighbor/sister/colleague’s child who has autism? You’re not certain if they like Disney Princess’ or Harry Potter Legos. You’ve heard that the ipad is great for kids with autism but it’s a little out of your price range…
What to do?
Here are 7 Gift Ideas that I believe every family with autism will enjoy.
1. Your Time
Offer to watch the child with autism so the mom/dad can do some holiday shopping of their own, or so the couple can have a quiet meal together and regroup.  Holidays are stressful for everyone. Imagine if you have a child with extreme sensitivity to lights, sounds, people, places.  It can be next to impossible to take the child to a crowded mall – especially during holiday times.  Being available for the family is one of the best gifts you can offer.
2. Your Help
If you are at the mall and see a Mom or Dad with a child who is having a difficult time, ask if you can help.  Even if the parent declines your offer  - just the mere gesture  can help the parent feel less stressed and embarrassed. And we all know that when a parent is less stressed, the child will be more relaxed.
3. Your Place in Line
If you are in the front of a line, and see a parent with a child with autism in the back of the line – offer them your place.  Sure you are in a hurry – but it can be very challenging for a child to have to wait in line.  Your generous offer can make the world of difference to that family.
4. An Invitation
Invite the family with autism over for your holiday dinner.  Yes, you recall that Jason is prone to outbursts, that he eats with his fingers, and he can’t sit for very long. But you don’t know how much your invitation could mean to a family. Before founding The Miracle Project, there were times when Neal and I had to spend holidays by ourselves.  Holiday times can be very lonely.  No one wants a whirling dervish at their home.  But just once, take a risk.  Even if the family declines, you are giving them the greatest gift of all by inviting them.
5. A Meal
Bring a holiday meal to the family with autism.   Or bring over a movie with popcorn to their house.  This way the family can enjoy being together without having to be out in the crowds.This year, Neal was going through some health challenges and we were not able to attend any of our friends or family holiday dinners.  My girlfriend, Vida insisted on me coming to her party, and picking up “Chanukah-to-go” to bring home to Jeff and Neal. She talked me into staying a few minutes to hear her 90 year old Dad recite the Hanukah blessings. Her thoughtfulness will be remembered always.
6. A Question
Call and ask what the child is interested in.  Sounds simple, yes? But not always understood. Sometimes our kids aren’t that interested in what other kids are interested in. There was one year that Neal was passionate about Tupperware containers.  A very thoughtful friend wrapped up 10 containers with lids. I still remember the excitement in his eyes as he unwrapped each piece!
Another idea, is to rally a group of friends together and contribute towards a class the child would like to take and the parents can’t afford.  Families with autism are often strapped for funds and programs can be costly.
7. Unconditional Love
The most important gift you can give to a family with autism is your unconditional love and support.  This is the gift that will keep on giving.
Many blessings to everyone and may your holidays be full of love, compassion and Joy.
With love and gratitude,
Elaine, Jeff and Neal
Elaine Hall
Founder of The Miracle Project
www.themiracleproject.com
Author: Now I See the Moon
www.nowiseethemoon.com

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Gratitude

November 22nd, 2010 · Uncategorized

Dear friends and family,

It is this time of year that we  take stock of what we have and overlook what we have not. There is so much to be grateful for.  Jeff, Neal and I are so blessed to have so many wonderful friends, supportive family and so much love in our lives.  Although there are tough times, we fortunately get through them – with care and even humor. I know that this is not always an easy task.

I remember a time when I was going through a particular dark time and felt very alone.  My Dad provided the wisdom that I needed.

My Dad can always find ways to be grateful – even when he was recovering from quadruple bypass surgery and a massive stroke and had to learn to speak again, and to walk after being told that he would never walk again. Even as he learned again to eat with a fork, and to see out of eyes that render him legally blind. “For a man in my condition,” he liked to say “I’m in great condition.”

When I ask my dad if he ever feels down, he says, “The thoughts come to me, but I decide not to think them.”

I want to think like my dad.

My cousin tells me that in our religious tradition, we are to thank G-d at least 100 times a day. Whenever we voice something positive we are to follow it with “Baruch Hashem.” “Thank you God.” Whenever we can, we are to focus on the positive, on beauty, on gratitude. “What a great discipline.” I muse. I try it on. It’s easier than you might imagine.

“I am grateful that I have eyes to see,” I say aloud, “ Thank you, God. I am grateful that I have ears to hear. Thank you, God. I am grateful for the hum of the hummingbird. Thank you, God. I am grateful that my eyes can see the bird and my ears can hear the hum. Thank you…” That’s four “Thank you God’s and it’s still only 7:30 a.m. I have the rest of the day to find the other 96. I’m liking this.

I determine to make a conscious decision every day to see the bright and the light in my world. I discipline my mind the way I would exert a muscle. It is a conscious mental workout to choose to see good rather than the bad, to feel gratitude rather than entitlement, to perceive autism as extraordinary rather than horrible. I liken it to when I first started yoga and couldn’t touch my toes. Then every day I got closer – first to my knees, then to my shins, then I touched the baby toe. Today, I am Gumby, bending so effortlessly that people assume that I’ve always been this flexible.

So it is with this happiness “muscle”: Sure, there are many sad things in the world. But there’s a difference between justified sorrow and voluntary suffering. I choose to see the gift in simple things like sunlight and flowers, in friends and family who love me, in miracles that occur unbidden. I choose to find the silver lining, to locate the positive in a given situation. Thank you, dad. Excerpt from Now I See the Moon: a mother a son, a miracle www.nowiseethemoon.com

May you all enjoy the blessings of this time.

Happy Thanksgiving,

With love and gratitude,

Elaine, Jeff and Neal

Please let me know how I may be of service to you, your friends, your community by means of my Miracle Minded lifestyle and special needs consulting practice.

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7 Ways to Help A Family Living With Autism

November 11th, 2010 · Uncategorized

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Miracles… Between the Lines

September 23rd, 2010 · Uncategorized

I’m so excited! (and a little nervous…)  I’m about to do an interview with Barry Kibrick on his award winning show, “Between the Lines.”

Here is what he emailed out to his subscribers:

From Barry Kibrick:

Barry KibrickDear Viewers:

Today is the first day it really feels like fall in Los Angeles.  It is also the first week that we get back to taping new episodes of Between the Lines.    Something about a new season and a new work schedule makes it officially feel like a new beginning.  I happen to be a fan of new beginnings.  I always enjoy the “firsts” of almost anything.  Be it the start of a new school year or any new adventure that comes my way.

For some, “firsts” are not so pleasing.  Change, new environments and other disruptions, cause more angst than joy.  No doubt, some change truly does disrupt our lives, but how we view that disruption can make all the difference in the world.

We’re all very different in that regard and in a book that will be featured on my first new episode back the author emphasizes that we must learn…  “To revere rather than dread the differences between us.” The author is Elaine Hall and her book is: Now I See the Moon. It is about providing insightful ways to deal with children with autism.  Her work was featured in the EMMY award winning HBO documentary Autism: The Musical which was about her program called; The Miracle Project.  Her first goal was to help her son Neal, but from it she literally creates “Miracles” for all who participate.    In her book she uses a quote by Albert Einstein that I want to share with you and that gives Elaine a perspective that helps guide her on her mission.

There are only two ways to live your life.  One is as though nothing is a miracle.  The other is as if everything is a miracle. -Albert Einstein-

It truly is a choice we make.  For some it gives solace knowing that nothing is a miracle, for me, I cannot help but think that when we see all the wonder around us we truly enjoy the awe of life.  Of course, if you disagree, I promise to revere rather than dread that difference between us.    Have a great week, enjoy the miracles, Barry

If your station, state or city is not the first one listed just scroll down and you’ll find it in bold red capital letters.   Remember, you can catch us “On Demand” by visiting www.la36.org.  Once there, go to Ch. 200, the Arts & Culture Channel, then scroll down the right hand side until you find the Between the Lines episode you’d like to see.   :



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Birthday Miracles

August 17th, 2010 · Uncategorized

“How was your birthday?” my sister asks from the East coast. “Full of lovely suprises,” I say.  “Like what?” she asks in earnest to share my joy.

“Like Cindy,” I gleam.  “Who’s Cindy?” she asks, puzzled.

Eight year-old Cindy walks into my Miracle Project class last October wearing two pig-tails, baggy clothes, and absolutely no expression on her moon-round face. Except for periodic screams, interrupted by alternating biting on her hand, she barely makes any sounds at all.  My one goal for Cindy – help her to find her smile.

Throughout the year of participating in movement, music, and creative dramatics during class-time, Cindy’s painful screeches lessen; she settles in, she finds a friend (Jenna, a nine year-old who also had never had a friend before).  But still, Cindy’s visage was smile-less.  Movement exercises usually do the trick – let’s find joy in our bodies through learning to skip, glide, hop across the floor.  Cindy painstakenly learns how to execute these movements, and even stops screeching in class.  She clearly is enjoying herself – still no smile.  How about pretend play? “Let’s pretend we are animals that are pets,” I call out.  Cindy offers to be a kitty cat and lovingly licks pretend milk from a bowl that Jenna offers to her.  No smiles. However, within a few days I hear that Cindy and Jenna have become friends outside of class. They go on play dates and even have a sleep over!  Neither one of them had ever had a friend before.  Occasionally, Cindy will sing with the others, but so quietly we can barely hear her. She even participates in our end-of-the-year show.  It is definitely a successful year for her.

I am thrilled when I hear that Cindy is attending our week long summer program.  She arrives in a pretty pink top, a skirt, pig-tails and characteristic, sans smile.  Her mom is concerned when she realizes that her friend Jenna is not enrolled.  Sarah, one of our teen volunteers instantly takes Cindy under her wing and supports her throughout the five days.  Each day, Cindy participates in more activities.  Her screeches have lessened considerably and she verbalizes to Sarah and the other kids. I am delighted with her progress and particiation.

The last day of camp happens to be my birthday.  The “lovely surprises” begin.  I awaken to my sweet husband’s hugs and kisses, Nealie enters my room with a big hug, and then, when I go to Starbuck’s, I am gifted with a free birthday iced green tea soy latte.  A lovely beginning.  I am excited to spend the day at camp on my birthday surrounded by the warm atmosphere of staff, volunteers, and campers.  Just as soon as I get out of my car, I am greeted by Sarah and a miraculously jubilant Cindy.  “She couldn’t wait!” says Sarah excitedly. “Happy Birthday to you! Happy Birthday to you! Happy Birthday dear Coach E e-e-e!  Happy Birthday to you!” sings Cindy, her face beaming an incredibly radiant smile. “Thank you, Cindy. Thank you Sarah, “I manage to utter as tears run down my cheeks.

This year’s birthday will be remembered for all the  unlikely surprises, free lattes,  my bff’s joining me for opening day to see “Eat Pray Love, “ my hubby cooking the most amazing dinner for all of us afterwards, and the miracle of Cindy’s smile.

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August 13th, 2010 · Uncategorized

7 Easy Ways to Help a Family Diagnosed with Autism.

We’ve all heard the news. 1 in 91 children are now being diagnosed with autism in the United States alone.  This is staggering. Today, almost everyone knows someone with autism. And yet, with all the talk about cures, causes, and concerns, there is rarely any information on how we can support a family with this diagnosis.  All too often, because folks don’t know what to do – they do nothing! Even to the extent of avoiding the family out of fear, or just out of not knowing what to do or say.  In this post, I hope to show how simple acts of kindness can make a world of difference for families who have children with autism.

I will highlight 7 easy, free, (or inexpensive) ways that you can do to help:

1.)   Let’s start with the easiest:

On the way to your weekly or daily trip to the grocery store, ask if there is anything you can pick up for their family.

If they say, “No, thank you, I’m fine,” don’t believe them! They aren’t.  Pick up some eggs, or a carton of milk and drop it by. If they insist on paying you back, accept. Then, the next time you ask them if there is anything they need, more than likely, they will feel okay to say, “yes, please.”

Why?  Because often taking a child with autism to a grocery store can be overwhelming. I can remember when taking my son,  Neal any where was difficult. More often than not, when we drove in the car, Neal would have a temper tantrum in his car seat. He would kick the seat in front of him, wailing for me to stop. I would pull over, stop the car and help him calm down.

Taking him grocery shopping had it’s own challenges. . On bad days, Neal would have a tantrum while I was shopping. The moment it started, I had to pull  him out of the cart, then leave the cart — groceries and all — in the middle of an aisle while a kind and bewildered store employee helped me carry a kicking, screaming Neal to the car. I would tell Neal directly, okay – I guess you’re not ready to go to the grocery store, yet. And we would wait a few days before returning. In those days, many of our meals had to be take-out.

Today, when I speak at conferences and someone asks how they can help a family whose child has autism, the first thing  I say, “Ask what you can pick up at the grocery store for them. “

2.) Learn the facts about autism, but don’t give advice.

Parents who have a child recently diagnosed with autism, are often overwhelmed with “to dos.”  Today there is lots of information to help unravel the intricacies of therapies, schools, and protocols. There are special needs advocates, websites, books, journals, you name it – it’s out there.   What families need more than additional information or advice is someone to listen to them – then need a friend. A friend who understands what they are going through and doesn’t judge, condemn or give advice.  I am blessed with wonderful friends. Two of my closest friends Rebecca and Nick and Vida and Leven lived walking distance from Neal and me. We got together as much as possible. In the beginning, we had dinners together, strolled our kids to the park, debated whether it’s better to use disposable diapers or to be more earth-friendly and stick to cloth. They were there for me when I got Neal’s diagnosis and supported me in every way they could.  They listened to my challenges, but only gave advice when asked.

Only give advice if you are asked!!!

3.) Take the sibling of the child who has special needs out for a special treat.

When there is a child who has severe needs, the typically developing sibling may often feel left out, or become a “little adult” over responsible, learning at a young age to put their own needs aside.  This can cause resentment or denial of their own feelings. Parents, juggling their own schedules and therapies for the child with autism,  may not have the time or space to give what they would like to the sibling.    This is where friends and family can be a tremendous support in a very easy way.

Ask if the sibling wants to join your kids for a movie, an ice cream, an outing.  Or if you don’t have kids, find out what interests the sibling, and take them to a ball game, a dance concert, or just a walk around the block.

And speaking of walks – this is really number 3 ½ – but if the family with autism has a dog, offer to take their dog for a walk.  That’s one more thing they don’t have to think about.  Siblings of a brother or sister with autism have a different life than their typically developing peers. Holly Robinson Peete and her daughter Ryan wrote a beautiful children’s book, “My Brother Charlie” that reveals a sister’s experience with her twin autistic brother.  Often as the siblings mature, they see how their brother/sister has enriched their own lives. You can be the person who makes a difference in their  young life.

4. ) Give the parents or single parent a night out.

Okay, this is a bit more challenging. You must be willing to leave your comfort zone to be available to be with a child who processes the world differently.   Learn about autism. Learn about  joining a child’s world. In my book, Now I See the Moon, I discuss ways to join a child with autism. I have found children, teens and adults with autism to be the most interesting and extraordinary people I have ever had the privilege to know, and yet I never would have known them had I not had been gifted with my own nonverbal autistic son.  Spending time with a child who has autism can change the way you experience the world!

Start just ½ hour at a time.  Or if you have the financial means, offer to pay for childcare once a month – or even once a year!

With the divorce rate of parents w/children who have autism 80% (almost twice the national average) you can be the one who helps save a marriage.

Or the one that helps a single mom or dad meet Mr. or Mrs. “Right!”

5.) Okay, you’re not good with kids. But you’re organized, and like to help others be the same. Offer to help with housework, organize their office.

Come over, wash their dishes, take out the trash, any small act can be so helpful.  Or again, if you have the financial means, pay for someone to help clean their house.

Parents with children who have special needs have to compromise on something and sometimes that’s household chores. I remember realizing that to be an A+ parent, friend, and daughter to my aging parents, I had to resolve to being a B- housekeeper.

6.) Bring over a cooked meal.

I remember the evening when a neighbor brought me over an amazing cooked brisket. I had just moved back into my town house. I had boxes everywhere. Neal was having a difficult time adjusting , and the thought of cooking a meal felt overwhelming.  A simple task for my neighbor (she just made an extra one the day she was cooking her’s) but 8 years later, I can still taste and smell that brisket and remember her thoughtfulness!

If you are real ambitious, start a food bank with your neighbors, or synagogue or church group.  Even having someone bring a cooked meal over once a month can make all the difference for a stressed recently diagnosed family with autism.

7.) Ask your high school child to volunteer their time weekly to play with the child  who has autism.

Many schools now offer community service hours for teens who volunteer in the community.  Programs like Friendship Circle, Best Buddies, and Circle of Friends.  Friendship Circle pairs kids with special needs to go into the home and play with the child 2hours a week.  At The Miracle Project and  at Vista Del Mar, www.vistainspireprogram.com we have created the Inspired Teens group. A group of middle school and high school teens who raise awareness, funds, and volunteer in our theater programs.   These teens also become friends with our teens.  They all say how their lives have been enriched by becoming friends with autistic teens.

Above all, the easiest and yet the most challenging thing that you can do with a family who has autism, is open your heart and mind with unconditional love and support.  Take away judging a child as having “bad behavior” or a parent as being “overly permissive.” And instead if you see a parent having a rough day with their child, ask “how can I help?” or as Lori Guthrie’s neighbor said one day after witnessing a melt down,

“Don’t worry about it. I didn’t notice a thing”

Yes, we know how busy you are. But you may be amazed at how taking some time to help others can help you gain perspective and see your own lifes’ challenges reduced to bupkis. More than anything, however, your life will be enriched by being of service and from entering the miraculous world of autism.

Please send me your stories of how you have either been helped or help out a family with autism.

Elaine Hall “Coach E”

Founder of The Miracle Project.

Author: Now I See the Moon: a mother, a son, a miracle www.nowiseethemoon.com


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Ten Tips for Vacationing with Your Child

July 30th, 2010 · Uncategorized

Ahhhh, Summer Vacation. A little R&R before the school year begins!

For many of us who have children on the autistic spectrum, long gone are the expectations of spending glorious temperate days lounging under a coconut palm in a tropical paradise while watching the kids effortlessly scoop sea-critters into a bucket of brine. Understandably, some of us, may decide to forego summer fun-in-the-sun get-aways.   Our experience has been that taking a family vacation is “just too difficult!” and these days, also too expensive. But with a little planning, family vacations need not be so stressful, and may even be joyful!

So what can we do to enjoy time together while on holiday?

First, it is important to consider where our children are in their ability to process and hold information, to evaluate their sensory needs, and to contemplate how well they are able to respond to stress (seemingly fun-filled environments can be completely overwhelming for our kids). Extensive preparation is key for all of these.

Tip #1 – Focus on doing something that you know your child enjoys.

Soon after I adopted my son, Neal,  from an orphanage in Russia, we joined my family reunion at a beach house in Delaware. When we get to the beach, it is clear that Neal is petrified of sand, of water, of anything to do with the beach.  I make excuses to my family, “He doesn’t know from the ocean. He comes from the Ural mountains in Siberia, for goodness’ sake.” Even as I defend him, I’m disappointed. I love the ocean, and I yearn to share the joy of the boundless sea with my son. Instead, we surrender, and end up spending our time on the patio of the beach house where there’s a wading pool. We’re joined by my mother, who was also raised in the mountains — the Shenandoah Mountains in Virginia, and she doesn’t like getting sandy.

Know what truly interests your child and plan your trip where you know he/she can be successful.  Also, it is important to note that our children’s ability to regulate their own emotional states is largely affected by our own. So if we are anxious, disappointed, frustrated, or angry, guess who’s going to feel even more so?

Tip #2 – Prepare your child’s sensory system. Anticipate, it makes Sense!

If you decide to go somewhere you’ve never been with your child, or try new activities together, make the effort to really prepare (weeks before you take your trip, if possible).After the “failed” beach experience, one of my son’s therapists, Shelley Cox, and I take Neal close to the ocean. Shelley takes a bucket of sand and actually brings the ocean to Neal. Slowly and compassionately we allow Neal to get acclimated. First Shelley puts sand on his feet, rubbing it gently on his skin. I then realize that the hot, scratchy sand must have been irritating to his sensitive tactile system, reflecting why he avoided walking on the sand, preferring to be carried to his beach blanket. I am even clearer that Neal’s fierce preferences are not random. I better understand his world and anticipate his needs.

Today, Neal loves the surf and can’t wait to jump in the waves!

Tip # 3 Rehearsals for life: Practice, Practice, Practice!

Before we fly on an airplane with Neal, we role-play everything you can imagine – packing bags, waiting in lines, taking off his shoes and going through security lines, placing luggage under the seat, wearing a seat belt, and sitting patiently. We use visuals – we watch DVD’s of airplanes, go online for pictures, we pretend play with toy airplanes, look through airplane magazines. We practice placing our hands over our ears during take-off/landing and we actually visit the airport.

If he is going to meet new people, we show him pictures and tell a story about them, letting him “meet” them first in the comfort of our home. If we are visiting family members whom he hasn’t seen for a while, we show him photos of passed experiences and current photos so he can see what they look like now.

We use Social Stories http://www.thegraycenter.org/social-stories/what-are-social-stories to help make sense of new experiences. This provides Neal a sense of control, and diminishes his anxiety.

Tip # 4 Expect the Unexpected. Go with the Flow (as if we had a choice!)

As well prepared as Neal was for his flight, once he got to the airport, he was so excited he couldn’t contain himself.  At the airport, as we waited to board, Neal stared at the huge planes out the windows. He had great anticipation. I turned my head for a moment. I then heard the sound of an alarm. Neal had raced to the exit door and tried to open it so that he could go outside and be with the airplanes. He panics. People glared at him. Security raced over. “It’s okay sweetheart,” I told Neal, trying to comfort him.  To the security guard and the concerned onlookers, what could I say? “He has autism! He just likes airplanes!”

I remember early on in our diagnosis becoming outraged at others for making what I thought were “stupid comments” about my child and his behavior. Too, I resented their judgment of how I handled unexpected situations based on Neal’s reactions to circumstances. Now I understand that such reactions come from ignorance (just plain lack of knowledge).  I now try to use every occasion as an opportunity to educate and sensitize others to the special needs of my very special child and others like him.

TACA (Talk About Curing Autism Now) http://www.talkaboutcuringautism.org/store/home.php?cat=258 has cards that you can present to strangers to help them understand autism.

Tip #5 Call the airline (cruise line or hotel) in advance and let them know you are traveling with a child who has special needs.

Our choice to go with the flow continued throughout the flight.

Once we boarded our flight, Neal did all that he had practiced – but we hadn’t practiced needing to go to the bathroom when there is a drink cart blocking the aisle.  Neal tried to go in the first class bathroom, but his efforts were thwarted by an irate first class passenger and a “by the rules” stewardess.  Neal starts to tantrum and fortunately my so calm husband steps in to ease the situation and help Neal wait until the aisle opens up.

Now I know to phone the airline in advance and tell them about my child’s special needs and apprise the flight attendants, that if something unusual presents, they need not be afraid. When I call before hand, they offer comforts including letting us board early, being kind, patient, and attentive to Neal. The more we proudly travel with our children or go to movies, malls, or neighbors’ homes, the more they too will come to learn compassion, understanding, and non-judgment, just as we have.

Tip # 6 When traveling long distances prepare activities to keep your child engaged.

For older children, this might include computer games, DVD’s, magazines, etc. When Neal was younger, I wrapped up little “gifts” in aluminum foil and let him unwrap them periodically on the trip. I remember going to a party supply store and buying bags of favors, little match box cars, airplanes, bubbles on a string, animated characters, plastic pretend food, etc. Unwrapping each package took up to three minutes

Tip # 7 Staycations: Same place, different experiences. Customize!

When I was a child we went on a family vacation every year, usually to the beach. One year, our finances were particularly low and we couldn’t get away – so my Dad made a fun time of “Vacation at home!” My dad and mom set it up so that each child and parent got “their day,” and the other family members went along.  My dad’s choice was fishing at a nearby lake, my Mom, “vegging” out at a local pool, my brother chose an amusement park, my sister a movie, and I chose going to an art museum. This special week stands out in my memory as one of the best vacations in my life.

Let your child be part of this planning process. Use a dry erase pad and write down possible ideas. Let your child circle or point to where they would like to go. For kids who are nonverbal – there is a new app for the iPad called Proloquo 2Gohttp://www.proloquo2go.com, which “provides a full-featured communication solution for people who have difficulty speaking.” Find what communication system(s) work best for your child so that your child with ASD can have a voice in choosing where they wish to go. Let each child feel special. If possible, you can bring along a teen volunteer to help out. For Moms – maybe your special day can be going ALONE to a spa day, while the rest of the crew has a picnic. Refuel. It matters.

AMC theaters now offer Sensory Friendly films where our kids can walk up and down aisles, make noise, and just be themselves.  http://www.amcentertainment.com/SFF/

Tip #8 Get a special pass when you go to an amusement park (or other busy venues like concerts, plays, etc.).

Some children with ASD love amusement parks, some find them too stimulating or overwhelming. Again, preparation is the key to success. Before taking Neal to Disneyland, we showed him photos, went on-line and let him do a virtual tour. Once we arrived there, we had a pretty good idea of what he wanted to do. Remember too that your child’s interests may seem odd but they are his or her interests. (Neal could go on Space Mountain 10 times!)

Most of the major amusement parks have a special disability pass where your child and family members do not have to stand in long lines. Don’t be proud!  Get this pass! In fact, Neal is one of the most popular kids on our block, when it comes to going to Magic Mountain, his now favorite amusement park, since everyone in his party doesn’t have to stand in line!!

Tip # 9 Enjoy the great outdoors.

Neal loves to be outside. I have seen him the happiest when he can be out all day long. Go camping, to the beach, hiking, have picnics, do things where your child can feel boundless with few opportunities to have to say “No,” or manage inappropriate behaviors. Today there are many outdoor programs that families with special needs can enjoy:

Leaps and Boundz  http://leapsnboundz.com/

FACT Family http://www.factfamily.org/

Surfer’s Healing http://www.surfershealing.org/index.html

Autism on the Seas (look for the new Miracle Project on the Seas, next summer!) http://www.alumnicruises.org/Autism/Autism_Home.htm

Camp Surf in San Diego http://www.camp.ymca.org/

Extreme Sports Camp  www.extremesportscamp.org/

Tip #10 Be Here Now (wherever “Here” is that day)!

Give yourself the present of being Present. Enjoy this precious moment. I once attended a family surf camp where the dad had spent hours preparing his son for surfing: practicing standing on a surfboard, paddling in a pool, etc. However, once at the beach, his son was so excited about being in the ocean, that he just wanted to play and dance in the waves, he didn’t want or need to surf as planned. The Dad moped on the beach, feeling this situation as one more failure. I suggested that he stop for a second and look at his child who was in complete joy. The father soon realized that it was his own need for his son to complete the task at hand, rather than enjoying the moments with his son.  He realized as we all do from time to time, that the gift of the present is sharing time, experiences, and engagement with each member of our family…in their own special way, and in their own special time.

As I look back, even that first seemingly “failed” beach trip where my Mom and Neal spent time on the patio together, was actually a beautiful bonding time between grandchild and grandmother.

Enjoy the moments. Yesterday is gone, tomorrow is a mystery. Today is a gift that is why it is called the Present.

Vacation is in part, a state of mind.

Enjoy your summer. And please let me know how your vacation goes!!!

Elaine Hall

Author: Now I See the Moon: a mother, a son, a miracle.

www.coacheonautism.com

www.themiracleproject.com

http://www.nowiseethemoon.com/

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Miracles Have Wings

July 22nd, 2010 · Uncategorized

How do you know if you are doing the right therapy for your child? With so many “remedies,” “cures,” and paths to take, how do you know if you are on the “right” one? How do we know if it’s “working”?

Like most things in my life, my answers didn’t evolve gradually; they hit me over the head. There’s a story about a man so eager to “help” a butterfly into the world that he opens its chrysalis too soon. The result is tragic: the wings never develop properly, the butterfly cannot fly, and it dies. I tell this story to parents and educators who seek to force kids with autism to be something they are not, who pressure them into compliance or try to coerce them to be part of this world before they are ready. My experience with my son Neal – who I adopted from a Russian orphanage at age two and who was diagnosed with autism a year later – has taught me that we must yield to slow yet natural progress: caterpillar to chrysalis to beautiful creatures that can soar on their own. But it took me a while to learn this for myself.

I had a significant “a-ha!” moment when Neal was seven years old. I had been taking Neal out into the community quite a bit, trying desperately hard to have a normal life and fit in. Anything that Neal was interested in, I pursued. Because Neal loved butterflies, I was overjoyed to hear about a butterfly exhibit that was coming to the Los Angeles Natural History Museum. It sounded extraordinary, a “Pavilion of Wings.” The brochure read, “Stroll through a beautifully landscaped exhibit, see Monarch butterflies, giant swallow tail butterflies, and more.” I couldn’t wait.

I prepared Neal with butterfly books and manuals. We acted out the life-cycle of a butterfly. We crawled like caterpillars, munched on leaves, and rolled ourselves into a cocoon and wait, wait, waited, until we developed wings. Then we flew around our house in a rainbow of laughter. I had often used this kind of creative play in my career as an acting coach for children. Being able to use these techniques with my own boy was even more rewarding. We had so much fun together.

Finally, the exhibit opens, and on that day I get Neal into the car effortlessly and we head downtown to the museum. Neal is a little reluctant to walk across the large parking lot, but once he nears the exhibit, his eyes widen with excitement.

We enter the Pavilion. Neal is in awe: hundreds of butterflies in all shapes and colors flick and flutter around us. Neal loves the butterflies. He loves them too much. When he sees these familiar, angel-like creatures, he wants to get close to them, to smell them, to touch them. He starts reaching out ecstatically to touch each butterfly. Like King Kong snatching airplanes from atop the Empire State Building, Neal grabs for butterflies.

“He’s killing the butterflies!” shouts a little boy.

“Butterfly killer,” screams a tiny girl.

Now all the kids and adults are yelling, “Stop him! Get him! He’s killing the butterflies!!!

”Murderer!”

This terrifies Neal. He grabs a plant and pulls it out of its pot. He knocks over other pots. The butterflies are flapping wildly. A security guard swoops in.

“I am so sorry,” I keep saying. “I am so sorry. He has autism. He loves butterflies. He didn’t mean to harm them.”

“Get that kid out of here!” someone shouts, loudly enough to be heard over the others who are still screaming at Neal.

But Neal doesn’t want to leave. He is actually quite amused by the commotion he’s causing, and I can’t get him out of the exhibit. Finally, I see some plastic, made-to-look-real butterflies on the gift shop counter. I rush to the front of the line. People glare at me for cutting in. I beg to buy one of the pretend Monarchs. I can’t wait for change, so I place a $10.00 bill on the counter, grab a fake butterfly, and race back to Neal. I use this insect amulet to coax Neal out of the Pavilion, through the long parking lot, and back to the car.

Sitting in the car, Neal and I stare blankly out the front window. I look at Neal. I see the puzzled look in his eyes give way to sadness. I start to cry. Neal stares back at me. He gets teary-eyed. He’s ashamed of what happened. We look long at each other. The tears give way to smiles. The smiles become laughter. It’s one of those situations in which everything is so terrible, that it’s ultimately absurd.

But that night I pray. “Dear God, I need help. We need help. It’s just not working.”

I fell apart that day. I surrendered to the fact that our lives are just going to be a bit different from the norm. “Abbynormal,” I like to say. From that day on I became 100% committed to keeping Neal at home and bringing in creative folks – actors, musicians, writers – to join his world, until he was ready to be in ours. Gradually, inch by inch, Neal did, indeed, emerge from his cocoon as a glorious butterfly – but on his own schedule, not mine. Among many other things, now Neal can sit patiently and watch a butterfly float by without any need to “possess it.”

Through writing my memoir, Now I See the Moon, I was able realize that some things in life, as in nature, cannot be rushed. Luckily, the right teachers, the right programs, the right books, and the right methodologies always appeared just when I needed them most. Neal will always be my guide as to what he is ready for and when he’s ready for it. A caterpillar knows best when he is ready to break out of the cocoon and emerge as the graceful butterfly he was always capable of becoming.

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