Frog Legs for Breakfast – Camping a la Francaise

People  often  ask how did I build the character I have to  survive all the challenges I’ve faced as a parent of a young adult with autism, including ‘negotiating’ with the systems in place to help us?  The answer is simple: I survived camping.

chantal snake

The word ‘camping’ conjures up different images for everyone. Mention camping to my husband   Daniel –  whose mother was  a  Puerto Rican from Manhattan and his father a Romanian from Detroit-  and here is what he pictures:

A 1960’s green station wagon, parked in a rest stop,  close to  flushing toilets, hot running water, and a Greek diner. His mom and sister sleep in the station wagon where the seats have been folded down, a mattress laid on top to make a nice cozy bed with blankets and fluffy pillows. Screens cover the open windows so the bugs can’t get in. Daniel and his father sleep in a 4 person tent pitched nearby. In the morning they rise and stretch, refresh themsleves in the cozy warm rest stop bathroom and get dressed. They drive to the closest Greek Diner or Howard Johnson, sit in a booth  and have a nice warm breakfast and fresh coffee.

My parents were French Alpinists before becoming French immigrants on Staten Island. They treked in the Alps carrying what they needed to survive in the wilds and sleeping in two-man  pup tents they had sewn together.  Camping meant battling the elements.

So my visual of camping is somewhat different than my husband’s. I see six children covered in soot sharing three small faded old handmade pup tents in a former cow pasture –  evidenced by the cow patties that are left behind – surrounded by woods, 15 miles away from any other humans.

My father was a project manager for a construction firm in New York.  Eventually he was  assigned overseeing the construction of a power plant  in Louisville, Kentucky.  During the school year he commuted back and forth from Staten Island to Kentucky. But during the summer, my parents would pack us all up and take us camping for two months in the Louisville area so that we could be together. For two months each of  three summers, the cow pasture is home.

In the middle of the field is a one room old, rickety wooden shack where maman and papa sleep and where we all take cover during scary lightening and thunderstorms punctuated by torrential downpours of rain which reduces the cow field (and cow patties) to a mud pond. We keep our supplies in the leaky shack  and every other Sunday a rural roman catholic priest comes to celebrate mass for us (now that I think of it, maybe he was giving us last rites).

At a safe distance from the shack and tents is the one-hole wooden outhouse all eight of us share. There are no lights, and when use the outhouse we take a flashlight even in daytime to make sure no snakes are waiting for us in the hole where we sit to do our duty.

There is a large campfire maman uses to cook and heat water  to fulfill the basic needs of eight people, and next to it a picnic table where we eat. The pots on the campfire are old, and dented, stained black from the soot  which emenates from the  campfire which is kept lit 24/7 when it is not raining. Soot from the fire covers everything we have at the campsite. The only running water besides torrential rains is the stream below where my dad takes us frogging on moonlit nights.

The worst part about camping is not the frogging; it’s the sleeping in the narrow short pup tent. Every night I crawl in to my side of the tent, the left side, careful not to knock down the short pole in the middle of the tent holding up the ceiling. The tent is very low to the ground and the tent’s ceiling at it’s highest point is only 12 inches away from my face if I am lying on my back.   As a little girl, I can handle snakes but I absolutely abhor spiders; I have nightmares about them, usually the black widow sort.

Unfortunately, every morning when I wake up, the inside surface of  my tent which I share with one of my sisters,  is full of between 10 to 20 Daddy Long Legged spiders. Up close, these spiders look like one giant eye with  8 skinny, long legs coming out of that eye. Here is my first dilemma every morning upon waking up: I must get out of my sleeping bag in the narrow short tent without touching the canvas siding of the tent, because if I do the spiders will start moving.  And I am certain they will crawl all over me.  The second dilema is deciding: Do I stay face-down  as I carefully crawl out from the tent backwards so I can’t see the spiders but I imagine  them jumping on to my back  as I try to leave the tent?  Or do I roll over on to my back and  shuffle out of the tent feet first, with my eyes wide open so I can keep my eyes on the spiders, terrorized that at any moment one or more of them will jump on me?

My siblings, who know about my fear of spiders are relentless. Every morning before eating breakfast we must  air out our sleeping bags and empty the tents. And every morning one of them, ususally my older brother, grabs a spider by one of its legs and chases me around the campsite. I quickly learn to run fast, very fast. Once I am so terrified that I run all the way to the closest dirt road a quarter of a mile away before realizing I am wearing nothing but my big white panties. No matter that there is no one around for miles to see me, I am mortified.

After the spider chase torture ritual every morning, it is time for breakfast cooked over an open fire. If  we are lucky, we have frog legs for breakfast. There is a steep path leading to the stream below, which becomes a mudslide whenever it rains. At the bottom of the path, an old wooden rowboat is tethered to one of the trees that overhangs the river.  The rowboat is so old  that most of the  paint is peeled off, but you can tell that at one time it had been green. The water in the stream is murky and the sun barely ever reaches through the large tree branches that hang over it, tree roots sticking out making perfect resting places for all types of reptiles and insects.

Occasionally, when the moon is bright my dad takes take us ‘frogging.’ There are parts of frogging I really like: getting into the rowboat at night with the moon shining and fireflys  glowing,  insects buzzing, and feeling like we are going on a real adventure.  What I don’t like is the killing the frog bit. The idea behind frogging is to have frog legs for breakfast. As our parents never cease to remind us,

Papa: “ Cuisses de grenouilles, Frog legs are an expensive delicacy served in the finest of of restaurants in France. We are so lucky to have all these delicacies hopping around  for free, waiting to be harvested for our dining pleasure.”

I never can understand why my friends recoil when I told them about my frogging experience.  I imagine they  haven’t had  the good fortune of tasting frog legs cooked over an open campfire.  They didn’t know what they are missing.

The oldest four children climb into the rowboat with my dad, and we each have our job to do. Two of us row the creaky old boat, one of us  holds a flashlight and shines it over the river looking for frogs, one of us carries the burlap bag, and my dad holds the pitchfork. The pitchfork is smaller that your regular farmer’s pitchfork,   it looks more like  the miniature pitchforks sold with devil’s costumers around Halloween. But the prongs on this pitchfork  are real metal, thin and sharp.

Before we get into the rowboat, my siblings and I fight over who gets to do what. Everyone’s favorite job is holding the flashlight. It beats bagging the frogs and is less strenuous than rowing. It’s dark on the river, with overhanging branches of the trees blocking any moonlight. I like being in control of the flashlight because then I can shine the light  and  actually see – if I want to- all the weird things out there making noises. Whoever controls the flashlight controls what everyone sees because it is pitch black on the river.

We all sit quietly in the rowboat and wait till we hear the croaking  of  frogs and then  I turn the flashlight on the frog and aim the beam  right in  his eyes. The frog is blinded by the light, and he sits frozen, unable to move. My sisters  row the boat closer to the poor frog as I keep the beam of light steadfastedly aimed at the frog’s  eyes. Papa lifts the pitchfork up and spears the frog in his belly and my brother quickly moves in with the burlap bag and voila! in the burlap bag he goes! We always catch at least a dozen, we are 8 people and a pair of of frog legs  does not provide much nourishment – as delicacies rarely do.

Yes indeed, camping is good training for facing your demons.

 

Pace Yourself

In the 1992 movie, Death Becomes Her, an aging actress (Meryl Streep) and her longtime novelist rival (Goldie Hawn) battle over the love of a plastic surgeon (Bruce Willis) as well as a magic potion that promises eternal youth.

As parents of  individuals with autism – many who still require our help and support as adults –  we may wish we had access to a magic potion that would keep us alive forever. But we wouldn’t want to end up like  Meryl and Goldie who after many years of life need paint and putty to cover their rotting flesh. And despite the potion,  they still can’t remember where they parked the car.

As parents, we need to learn to pace ourselves. At the beginning, after the diagnosis,  we are trying to do everything possible to help our child.  It’s  true that early intervention is important.

But it is also true that when you are a parent, you are in it for the long haul. Think of a marathon, not a 200 yard dash. Pace yourself accordingly. You’ll last longer, even without a magic potion.

Take Care of Yourself. No One Else Will.

You are not a cat and you and you don’t have nine lives. Even if you believe in reincarnation you only have one go at this time right now. So it’s important to take care of your physical and mental health.

If you are a caregiver to others, it’s all too easy to lose yourself. There’s so much to do, you have barely time enough to take a shower.  It’s hard to make time for yourself every day.  Often we put ourselves in second place – but this is wrong! If you don’t take care of yourself, you will be no good for anyone else. Tomorrow there will be more care taking and more reasons why you can’t do something you want to do to take care of yourself. So you have to find some time every day.

For some it is impossible to leave the house, or find more than 10 to 15 minutes at a time  (I’ve been there!) but it’s important to create pleasurable moments for yourselves in even those short periods of time.

Today I’m meeting a friend and other dog-walkers for a walk. This takes care of three things important to my well-being: I’ll get some exercise (physical health), I get to spend time chit chatting with a friend (mental health), and I get to see Handsome have fun with his dog-mates ( laughing is a great stress releaser). OK, so I have to do this at 6:15 am  (where even in San Diego  it is cold and still dark this time of year) before my husband leaves the house, but hey, nothing’s perfect!

What are you going to do to take care of yourself today?

Why When You Don’t Know What You Want, You Get A Lot Of What You Don’t Want

By Brian R. King LCSW

This is the fourth of a ten part series I have decided to put together especially for you. I hope these lessons will serve as a road map of sorts on how to be on the Autism Spectrum and have a successful, happy life. So let’s get started . . .

Step 4: What Do I Want?

How many times have you heard someone on the spectrum complain about how much they don’t like the way things are going in their life? How often do you ask them, “Well what do you want instead?” Only to have them respond, “I don’t know.” This is one of the greatest challenges when parenting or working with a spectrumite. See if these interactions seem familiar as well.

# 1

I want people to accept me for who I am?

Who are you?

I don’t know.

# 2

I wish people would treat me better.

How would you like them to treat you instead?

I don’t know.

# 3

I wish I had friends.

Who do you want to be friends with?

I don’t know.

And the list goes on and on.

Parents ask all the time, “How do I motivate my child?” Teachers ask, “How do I get them to want to do their work?” When asked, “Well what do your children or students want? Guess what the answer is . . . “I DON’T KNOW.” In these scenarios both parents and teachers are more interested in compliance. They want the children to meet their needs and don’t stop to consider the child’s needs.

So if you as a parent or teacher don’t know, how can the child? In the meantime, you aren’t getting anywhere, you aren’t creating anything and you aren’t happy because instead of getting crystal clear on what you want, you settle for what the world gives you.

Think of it this way. You don’t have to do anything to grow weeds, they grow everywhere, without help from you. But if you want to grow a garden you need to get rid of the weeds and do what is necessary to grow the garden you want. Including pulling out the weeds.

So if you continue to sit in the place of “I don’t know” then the weeds of life will grow around you automatically until you decide what to do instead.

Life sucks because you allow the weeds to grow. Make sense?

Why Don’t You Know?

There are many reasons why spectrumites respond to questions with “I don’t know” a lot of the time.

1. Too Tired. I for one do it a lot when I’m tired. My son will ask me a question repeatedly and at that time I’m so tired it’s hard to think about his question because my brain is too tired to do the work.

At the end of a long school day parents ask their child, “How was your day?” and get “I don’t know.” Your child is exhausted and needs time to wind down, they’re likely too tired to answer.

However, if you ask that question when they’re feeling more alert and focused you’d likely get a very different answer.

2. Not Interested. Saying, “I don’t know” is also an effective way of getting rid of a conversation they don’t want to have. It is difficult to have an open ended conversation with someone when you don’t know the point or how long it’s going to last. Therefore, you protect yourself from the uncertainty by saying “I don’t know” so the conversation doesn’t occur.

The way to add more certainty for the spectrumite is to be concrete. For example, “I’d like to ask you a question about your day and then I’ll leave you alone.” That’s pretty darn clear wouldn’t you say?

3. Lousy Question. Too often the question you’re asking is too vague.

“How was your day?” starts an avalanche of thoughts the spectrumite now needs to sift through to give you an answer. It’s like trying to find your way through a snowstorm. “Did you learn anything interesting in science class today? is far more specific and easier to answer. If they answer “Yes” you ask, “What did you learn that was interesting?” If they answer “No” you can ask what they did learn.

4. Difficult to Consider. In many cases the question you’re asking requires them to look too far into the future. Since spectrumites see things right in front of them more clearly (forest versus the trees), seeing further out requires them to consider more variables. This can be very overwhelming because it requires them to both multitask and consider hypotheticals instead of facts. At best I can only plan a week at a time.

5. Isn’t An Option. Here’s the biggie. A spectrumite who is constantly being told what to do and who to be learns that what they want isn’t an option so they stop considering it. Instead they follow the lead of those who they’ve learned they’re responsible to make happy. READ THAT ONE MORE TIME PLEASE!

I work with clients who are always asking what they should do, what I think they should do and other variations. When I finally get past the “I don’t knows” it comes down to fearing they’ll making a decision that others will be unhappy with. They eventually learn to fear decision making.

So What Now?

It can be difficult to reverse the fear of decision making which is the most common challenge I experience when working with spectrumites. But let me give you a few ideas to get you started.

First, instead of judging or criticizing the decision, be curious about it. Ask, “Could you explain why you did it that way?” You may very well get, “I don’t know.” Especially if a person acted on impulse instead of thinking it through.

If the person becomes defensive it’s likely because they hear judgment in the question. So clarify, “I didn’t say anything was wrong with your decision, I’m just wondering why that?”

Next, Point out simple decisions the person makes that have a positive result. For a small child, something as simple as,

“Do you like your ice cream cone?”

“Yes.”

“Are you glad you chose chocolate?”

“Yes.”

“Sounds like you made a good decision then huh?

“Yes.”

With my thirteen year old this is a common conversation. When he decides to handle his frustrations by talking back and slamming doors he looses privileges. When he decides to take a break to collect himself and then sit down with my wife and I to talk it out, he ends up feeling much better.

Since we have that comparison, when he begins the road to door slamming I can ask him, “Is what you’re about to do going to get you what you want?” I then wait 5-10 seconds for the question to sink in then add, “The decision is yours.”

Contact:

Phone Number: 630‐778‐3447

Fax: 630‐6893‐9004

Email:Brian@SpectrumMentor.com

Website: http://SpectrumMentor.com

HBO: A Mother’s Courage: Talking Back to Autism

International Autism Awareness Day is on Friday, April 2nd and what better way to celebrate than by watching an HBO documentary about a family from Iceland that travels to the United Kingdom, Denmark, and many different states in the US to find ways to help their child with autism?

Producer Margret Dagmar Ericsdottir decided to film her search to find help for her son, Keli, who is ten years old and severely effected by autism. Directed by Fridrik Thor Fridksson (the Oscar nominee Children of Nature), and narrated by Oscar winner Kate Winslet, the film takes us to different places where Margret interviews parents, advocates, scientists and professionals. Temple Grandin, Ph.D., whose life story recently aired on HBO, provides insight, as does Dr. Geraldine Dawson, chief science officer of Autism Speaks. Dr. Simon Baron-Cohen director of the Autism Research Centre at the University of Cambridge, and Dr. David G. Amaral, research director, Mind Institute also provide food for thought.

This documentary does not sugarcoat autism, or celebrate it, or cure it. The movie’s strength lies in that it shows the heart-wrenching reality of what families have to go through to get assessments, diagnosis and advice; it shows the reality of the pain parents feel when their bubbly, verbal child regresses and becomes autistic. We visit with families who have more than one child with autism. A Mother’s Courage does not try to cover all the autism treatments and therapies (i.e., biomedical interventions); it would take a series to do that, not just one film. Instead, the last half part of the film focuses on what Margret has found that works with her child, the Rapid Prompting Method (RPM).

This HBO film is a good resource for promoting community awareness that families can share with their relatives and neighbors. They will gain a better understanding of what families effected by autism go through every day (the motivation behind my writing the recently published book, 41 Things to Know About Autism).

A Mother’s Courage shows us how caring and concerned professionals are; they don’t have all the answers though they wished they did. Joseph E. Morrow, Ph.D., BCBA
and Brenda J. Terzich-Garland, M.A., BCBA founders of Applied Behavior Consultants (ABC ) in Sacramento say that 40 % of the children who attend ABC school at an early age (where they receive intensive therapy based on the principles of applied behavior analysis, ABA) are able to be integrated in their neighborhood school after two years. We are left thinking, but what about the other kids — the kids that make some progress with ABA but never learn to communicate past the “I want” step with the Picture Exchange Communication System (PECS) or never get past three-word sentences?

In the film, we find out that luckily, Portia Iverson and Jonathan Shestack, co-founders of Cure Autism Now, wondered the same thing, and brought Soma Mukhopadhyay to the United States after hearing about how Soma had developed a method to teach her son, Tito.

Margret visits Soma, now the Educational Director of HALO (Helping Autism Through Learning and Outreach) based in Austin, and meets Linda Lange, founder of HALO and other parents and their children. For parents of children with autism who are not familiar with the Rapid Prompting Method, this is the part of the movie that will enlighten them to another possible method for teaching academics and communication. RPM is not a miracle cure, it’s a way to try and reach children using the learning modality that works best for them. The footage of Soma working with Keli gives a good overview of RPM.

My son Jeremy was taught by Soma for a year and a half on a bi-monthly basis when she lived in California. Recently Jeremy wrote an article on How The Rapid Prompting Method Gave Me A Voice. After watching A Mother’s Courage he spelled,

“I am really glad to see people talking about people like me. The fact is, there are many of us. I think there needs to be more understanding. I get frustrated by people not realizing I am smart. But I know I am one of the lucky ones because my mom found a way for me to learn and communicate and the school continued.”

I wish there would have been a better choice made for the final scenes of the movie. Whereas Soma is down to earth and logical, the music took on heavenly tones and rose to a crescendo with angels singing in the background. The symbolic last scene of mother and son walking though a fog with the sun and heavenly music breaking through was heavy-handed.

Much better to have ended on Soma’s words — realistic and inspirational in a practical manner:

“What we have to do now is to educate him so he becomes aware of what he is capable of and lives according to his capability.”

Isn’t that what all parents strive for and want for their children?