The View from the Cheap Seats

NOTE:  Although most of my "Autism Archives" posts pertain to spectrum related issues, there are times when I must follow my heart.  Thank you for supporting me.  

"We begin to learn wisely when we're willing to see the world from other people's perspective.”

 Toba Beta

When my son was diagnosed with autism, I learned that the key to connecting with him was attempting to see things from his perspective.    By understanding what caused him pleasure, pain, comfort and fear,  I was able to gain his trust and help him navigate the world.  His perspective also taught me to appreciate beauty and fascination in ways that I had never experienced.   My little unconventional thinker also taught me to be a better sister.

My younger sister Beth was diagnosed with chronic kidney disease when she was 11 years old.   Her life was forced to change in every way.  Although she had the love and support of an extraordinary family, she was ultimately responsible for managing her health and staying alive.  She spent 10 hours per night on a dialysis machine in her bedroom.  She had to manage a strict and critical diet and was unable to socialize like most young girls.  At 11 years old, my sister was forced to leave her childhood and manage life-sustaining responsibilities.  This pattern of personal medical advocacy was a constant theme.  She faced dialysis, a transplant and organ rejection, and did it with dignity.

My sister and I saw the world differently.  We shared secrets, inside jokes and a mutual understanding and admiration that is privy only to sisters, but sibling frustrations were there as well.  Her priorities were not my priorities and as we became adults, my frustrations and judgments became more apparent.   She missed deadlines, refused to return phone calls and ran perpetually late.   I saw her as being frivolous and irresponsible, but my view was obstructed.  I didn't try to see things from her perspective and it cost me precious insight into her life.

Life itself was not something my sister took lightly.  She fought every day to maintain

medical stability while enduring chronic pain and illness. Despite her physical challenges, she saw beauty and wonder everywhere and those who shared her journey enjoyed the gifts of her vision.  Life from her  perspective was fragile and she appreciated experiences more intensely than most. 

In time, I learned to see Beth's world with more clarity.  A little maturity and a lot of patience  helped me to join in, from time to time, on her journey. I learned to appreciate and admire the woman she grew to be.  I became so proud of her accomplishments and only wish that I'd learned the power of perspective a little earlier.

The view from the cheap seats can certainly be unclear.  Until we are willing to see life from someone else's perspective, we can't fully appreciate who the person is.   This is a lesson that helped me be a better sister, mother and wife.   For me, it's an essential piece in meaningful relationships and I think it makes me a better person.

Sadly, on October 30, 2011, my sister lost her fight to kidney disease.   Her 34 years were not nearly enough, and I miss her dearly.   Although Beth didn't get to spend a lot of time with her nephews, they shared a very special bond. She didn't see autism or a diagnosis. She saw her beloved boys, appreciated their perspective, and played by their rules.  They were kindred spirits and adored each other.   

The best way I know to honor my sister's memory is to take the lessons she taught me and give them life.  By attempting to see the world through Beth's eyes, I am able to slow down and take myself a little less seriously.  I appreciate art, and every once in a while, attempt to create my own.  I try to dance more and judge less.  Life's too short to get caught up in petty issues.  The view from the cheap seats sucks.  To honor Beth, I'm going to rush the stage!

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10 Tips for a Happy Halloween

I LOVE HALLOWEEN!  I am "that" person. I've had some sort of costume box fully loaded since I was 8 years old.  I dressed up to pass out candy before I had children. I had my children's Halloween costumes planned before my 3rd trimester.  There.  I said it. One more confession:  I had A LOT to learn about how I needed to adjust my own expectations when it came to planning a fun and enjoyable experience for my kids.  (one more maternal sacrifice I'll use at a future date for guilt-intended manipulations)

As much as I LOVE HALLOWEEN, it can be an overwhelming experience for lots of kids.  Sprinkle a little sensory processing challenges on top & you've got the perfect recipe for a sad little goblin.   Some kiddos would rather skip the nonsense all together (those kids grow up to be my husband).  My suggestion for kiddos who may be bothered by constant doorbell ringing & unplanned visitors is to either turn off all of your lights or go to a neighbors house who isn't participating.   For my pals who want to participate but need a little "pre game prep", I've come up with a few things to consider to make your Halloween a spooktacular success:

1. Do Your Homework:  Fun books and DVDs about Halloween are a great way to introduce jack-o-lanterns, silly costumes and trick or treating.  Most popular characters have Halloween themed stories and can be a great place to start. 

2. Decorate Together:  Putting a few festive things around the house is a fun way to get the party started.  In our house, fine motor projects are not our favorite (read: they are super hard & often make us frustrated)  Instead, we've used foam stickers & paint to decorate our pumpkins.  I'm a big fan of the Mr. Potato Head-esque pumpkin accessories to make silly faces.   Check out this cute project(you cut/they paste): Freaky Faces

3. Practice, Practice, Practice: Social stories are a great way to prepare kids for unfamiliar experiences.  Writing a basic story with pictures (either photos of your kids or pics from the internet) that explains the experience, can help children understand expectations.  Another fun idea is to practice trick or treating.  In our house we play "trick or treat hide & seek".   Practicing how to trick or treat with a neighbor or friend is also really helpful.  Don't forget to throw in a few "what if" scenarios.  What should we say if someone says "you look scary/beautiful/so silly"?  What happens if no one is home?  What happens if you receive a treat you don't like?  What should we do if there is a dog (that's a BIG one for us)  Think about things your kiddo may be sensitive about & teach them how best to manage the situation.

4. Costumes:  My best advice is to really consider your child's likes/dislikes in regards to their costume.  If they have tactile sensitivities, a basic & comfortable costume is best.

Here are a few ideas : Smarty Pants , Road Trip , Quarterback

Letting your child participate in planning his/her costume is key.  They will be much more engaged if they helped create their fabulous frocks. In our house, most Halloween success has been found in our playroom dress up box (train conductor hat, jeans, done.)

5. What's the Plan Stan:  I am all about a clear game plan before we embark on new and exciting experiences. (caution: meltdowns can be major and occur often)  Think about the following:  Candy Management - Do you eat on the road?  It's not a race- staying together is part of the fun.  Quality vs. Quantity - focus on having a fun time going to a few houses rather than playing "who can get the most candy".

6.  Avoid Route Pout:  In the heat of the moment,  little witches and Wiggles can get caught up in the packs of roving neighbors running house to house.  A pre-planned route has helped us avoid "route pout" for the last few years.  Talk to your kids about where you're going before you go.  Also, give them a warning before it's time to head back.

Try to quit while you're ahead and avoid the "hitting the wall" meltdown that often occurs when kiddos have met their stimulus saturation point.   I'm a big fan of "less is more" when it homes to how many homes you visit.

7. Calm, Cool & Collected:  Keeping little bodies trick or treat ready, takes some "game day planning".  We don't want them over-stimulated before it's time to go.  Halloween projects that include heavy work (proprioceptive activities) will help keep them calm.  Making Halloween designs out of play dough, holding weighted toys/vests/blankets, drinking an orange smoothie through a straw, eating a trick or treat trail mix (with crunchy & chewy snacks) are a few ideas that may help. 

Plan a healthy haunted dinner prior to going out.  A meal with lots of protein & carbs will give them much needed ghoul-fuel.

8. Buddy System:  Halloween is a great time for a play date.  Having a friend share trick or treating helps on lots of levels.  Not only is it more fun to be silly with a buddy, but a friend can really help navigate the night.  There are so many factors our little ones have to manage (social cues, body awareness, sensory stimulations...) having a trusted friend there to model behavior is a great way to plan for success. 

9. Be F.L.E.X.I.B.L.E.:  So you spent 3 weeks making a Thomas the Train costume out of recycled cereal boxes & at the last minute your little engineer doesn't want to wear it.  OK.  So what?  It's his night & he should be comfortable.  Throw on a silly hat & hit the road. (remember: it's hard for us to see things from his perspective.  Fear/pain/anxiety are in the eyes of the beholder)

10. Now What?:  Congratulations!  You've planned & executed a fantastic trick or treat expedition.  Now what do you do with all of that candy?  In our house, we have LOTS of food allergies & sensitivities.  We have a strict rule that there can be no eating treats on the road. (I keep a few lollipops & treats handy for a roadside fix)  I make sure that the candy we give out at our house is OK for my kids (conveniently it is candy I don't care for).   When we get home, the kids can have an approved treat.  

After the big day, all of our collected candy (after it's been inspected by Dad)  goes to our dentist, who sends the candy to our troops My kids get to have the treats that are good for them & share with honored heroes.  (the fire department has also received goody bags from my kids)

As I've previously mentioned, I LOVE Halloween.  Please feel free to share any ideas and tips that you've found helpful. With a little preparation and a LOT of patience, Halloween can be a fun time for all. 

TRICK OR TREAT!!

There Are No Strangers in the Waiting Room

There is a community of folks who spend their days creating schedules, analyzing data and frequenting the waiting rooms of therapists and doctors.  We are the parents of children on the  autism spectrum and we know how to get the most out of a 50 minute block of time (the average time a child spends in a therapy session).
Typically, I use my waiting room time to race through a "child-free" errand or three.  It's a luxury to shop, return or browse without having to work simultaneously on body awareness, social skills and conflict resolution.  The grocery store, sans kids, can be a vacation and I cherish my 50 minute windows of Zen.

Three years ago, when my oldest son was diagnosed with Autism, I used my time in the waiting room to learn, listen and breathe.  At that time, I spent most of my days driving to therapies, visiting waiting rooms, and driving to more therapies.  The parents who sat with me were often waiting room veterans and helped me through this frightening time.

" How do I prioritize goals?"  " How do I create a schedule that  works for the whole family?" " What do I do first?"  "I CAN'T DO THIS.!!!" (followed by uncontrollable weeping. )

Some of my waiting room mentors were friends of friends whom I had never met but who offered support on the phone or via email.  They remembered how terrified they felt when their child was first diagnosed and they helped me in ways no one else could.  They understood everything I was going through.  They explained therapeutic jargon. They gave me strategic advice for managing schedules, my family and my sanity.  Best of all, they let me sob until all I had left  was a raw need to learn all I could about how to help my son.

Now, three years later, I'm still a waiting room frequent flyer.  I am grateful that we've been able to substitute some of our therapies with swim team and soccer practice, but we still have our share of clinic visits.  There are no strangers in the waiting room.  We share ideas, contact lists and snacks. This community of waiting room dwellers is a powerful team and supporting new members all the time.