Tuesday, February 14, 2012

Aspies, Empathy and Valentine's Day

Don't ever let anyone tell you that children diagnosed with Autism are incapable of empathy.  It just isn't true!!!

Barney is again on a downward spiral at school.  He had six incident-free weeks in a row between December and early February and the TEAM decided to back off his rewards a bit.  Unfortunately his aide interpreted this to mean she could relax and that was the wrong thing to do.  He's been in trouble 3 out of the last 4 days.  When he gets in trouble, he becomes anxious; when he's anxious he looses his abililty to control his impulses; when he looses impulse control be becomes physically aggressive. Physical aggression lands him in seclusion and results in an in school suspension. Yep, that's where he was Wednesday and Thursday of last week, and again today.

Last night when I was putting Barney to bed we had our nightly chat about his day.  I told him I was sad because he was spending so much time alone.  That it hurt me to see him in trouble so often and that I felt like I was failing him as a Mom because I couldn't figure out a way to make things better for him.  He told me, "It's not your fault Mommy!  You are the best Mommy ever, its school who is doing something wrong."  Then he gave me a huge hug and the tears ran down my face. If that wasn't an act of empathy, I don't know what is.

Last night I posted a question on Confessions on an Asperger's Mom's facebook page and the response from the community was overwhelming. We need to make some significant changes for my son.  I don't know exactly what or when, but change is definitely in the air.

This morning I was awakened at 6:23am by a gentle kiss on my cheek and a softly whispered, "Happy Valentine's Day, Mommy" in my ear.  He gets it!!!  He knew I was hurting and worried about him and he reacted appropriately; empathy at its finest.  He's spending Valentine's Day in suspension but was able to put my feelings ahead of his. Its not going to be the best Valentine's Day of my life, but I'm going to hold on to the warmth of his love all day.

Wednesday, February 8, 2012

T-9 to Disney

We are taking the boys to Disney World for the second time in less than 2 weeks. I sometimes cannot believe we are doing this, but there is a method to our madness.

Before becoming a Special Needs Mom, I imagined taking my children to Disney once, just as my parents had taken my brother and me. I thought of the "happiest place on earth" as man made, lacking culture and a huge advertisement to get parents to buy Disney products for their offspring.  Yes, it is all those things, but for a family like ours, it is a place we can all enjoy ourselves.  A place where Barney's issues don't feel quite so overwhelming and we can just be a family on vacation.

Disney has historically worked hard to accommodate special needs families. They don't just think about the child with special needs, they are sensitive to siblings and other family members as well. They want everyone in the family to have a wonderful time. When a parent or child is in a wheelchair, extra help boarding rides is an obvious need.  Autism is an invisible condition (most of the time) but families touched by ASD are given the same assistance as those with any visible disability.  Shorter lines and quiet, less crowded spaces to wait make all the difference for us.

We have somewhat altered our plans, having learned from our mistakes the first time around.

Travel: We booked a direct flight; more expensive but a necessity.  Barney is OK when we initially set off on adventures, excitement helps.  We bring headphones (planes are very loud), his favorite snacks, ipad, games, books and novel toys for the airport and on the plane and usually we can get through without a meltdown. Switching planes with a long layover or a mad dash to the other end of the airport because of a too short layover is asking for it.  Been there, done that, not worth it!!!

Lodging: This time we are staying on property.  Again, more expensive but well worth the money.  When a hotel says they are 4 miles from Disney, that means the edge of the property.  The Disney World property is huge!!  Last trip we stayed 5 miles away and the hotel provided transportation to the park.  Sounded good.  What we did not know was each bus ride would take AN HOUR.  The shuttle looped through three different hotels and stopped at Downtown Disney, Magic Kingdom, Epcot, Hollywood Studios and Animal Kingdom.  Most mornings Barney needed a break as soon as we got off the bus.  This trip we are staying in a Disney Condo near the Magic Kingdom.  It has a small kitchen so we will have breakfast in our P.J.'s just like we do at home when we are on vacation.  We can walk to the Magic Kingdom, take a short Monorail ride to Epcot and only have to board a bus for Hollywood Studios, Downtown Disney or Animal Kingdom.  We are also close enough for Barney and I to return to our room in the middle of the afternoon if he needs some down time. This change in lodgings should be a huge improvement.

Dining:  First visit I was afraid to commit to dinner plans.  I had no idea what condition Barney would be in by the end of the day.  At home, 4:30-bedtime is hell on the worst days, but never easy even on the best days. Unfortunately I aggravated this situation because without reservations we had long waits every night. I made reservations this time.  Eating on schedule makes all the difference when trying to keep Barney regulated.  We have dinner seating for 5:45 or 6 pm each evening.  No guess work, no long wait.  I am very hopeful that this change will improve our evenings significantly.

We are starting to become increasingly excited about our trip.  Here's hoping it lives up to our expectations and then some.

Wednesday, February 1, 2012

Water, Water Everywhere

I should have bought stock in Bounty paper towels long ago.

Barney has loved experimenting with liquids since early toddler hood.  It started innocently enough when I bought him a floating stove top and cooking utensils for the bathtub.  I was tired of him dumping the dog's water dish multiple times a day.  He also constantly grabbed for any beverage container within reach at home, and anywhere else we happened to be: playgroup, the park, Starbucks, it didn't make a difference to him. In an attempt to be a creative problem solver, I figured encouraging  his pouring and mixing tendencies in the tub each evening would decrease his need for this behavior outside of the tub.  Hah!

The bathtub full of cups, pitchers, bowls, pots and spoons inspired Barney to find new and more exciting liquids to pour and mix. All of my cleaning supplies and toxic liquids were safely out of reach even before Barney was born, having childproofed for his older brother 18 months earlier. Henry liked to splash but it never occurred to him to explore any of the other bottles and tubes in the bathroom.

Whenever the house got too quiet I knew to check the bathroom. If I reacted quickly enough I would find him mixing toothpaste, mouthwash and shampoo in a drinking cup with his brother's toothbrush. His intelligence has never been in question.  He had already figured out that a soapy toothbrush tasted yucky so after one bad experience he never again used his own.  If I happened to be distracted by a phone call or my older child and hesitated before finding him, the experimentation would have escalated to the sink or toilet.  I can't even begin to imagine to money we have spent replacing shampoo, conditioner, lotions, toothpaste, shaving cream, etc.

I understood that Barney's behavior was fulfilling  a sensory need as well as being an outlet for his natural curiosity. When the weather was warm enough, we do after all live in New England, I indulged lots of water play outside. We had a water table on the deck, a wading pool, sprinkler, hose with a kids firefighter attachment, sprayers, water balloons, splash balls and anything else I could think of. I let him play and play as long as he wanted and it worked.  That is, until the temperature dropped enough for it to be uncomfortable to be soaking wet outside.  Cold weather always brings with it a significant increase in bathroom play.

Last weekend however, he took things to a whole new level.  His latest thing is indoor water balloons.  I have been as patient as possible and have allowed this play in the bathroom.  He fills the balloon in the sink and explodes it in the tub, the bathroom gets really wet but I can deal with it.  On Sunday morning while I was in the shower (and my husband was supposed to be paying attention, cough-cough) Barney filled up a water balloon and decided that he wanted to see how long it would take for the water to drain out from a pin hole.  Since he didn't want to wait alone in the bathroom he brought the balloon into the kitchen. Daddy is not nearly as tolerant as I am and Barney did not want to be yelled at so he hid his slowly leaking  balloon.  He hid it behind MY LAPTOP!!!!!

I came into the kitchen relaxed and freshly showered and found a flood.  My computer and all the paperwork on the counter surrounding it (prescriptions, applications, bills, etc.) were soaked and sitting in a puddle of water.  I am usually a calm, even tempered person but I lost it!  There is only so much I can take!!!