Dared To Be Spontaneous

Being spontaneous with two boys on the spectrum is very hard.  They need to be front-loaded (told what’s coming before it happens).  They need schedules, calendars (I can’t count how many trees have been killed for the sake of custom calendars in my house), and routines. 

But we threw caution to the wind Sunday night.  It was a hot day and our house was not cooling down much—it was looking to be a sweaty summer night.  It had already been a difficult day, starting off with us leaving church early because TL couldn’t handle the special all-church service we went to (with no childcare—yikes!).  Everyone was cranky and everyone wanted to get out of the oven we called home.

So, at 9 that night, we booked a motel online in Watsonville, a coastal/farm town about an hour away.  We packed up the bare essentials and took off driving.  Our oldest, TJ, was bouncing-off-the-walls excited.  He always sees his favorite characters on TV go on trips and had grand ideas of what the next 24 hours would be like.

TL, though, was definitely thrown.  He didn’t know what was going on and had never spent a night away from home.  He usually loves the drive through the Santa Cruz Mountains, but the nighttime view can be a little spooky.  He told us he was scared (this was a BIG thing for him to recognize emotions) and my husband held his hand until he felt better.

We got to the motel…and we soon wished we had done a little more online research.  It was a mom-and-pop place that was a bit rundown.  We didn’t feel completely comfortable, but it was free of bugs and generally clean, so we stayed the night.

Then came the night of regret!  TL did not crash out until midnight (really wish he would have fallen asleep in the car) and TJ was tossing and turning until 3am.  I had insomnia (I am never good at sleeping in new places) and didn’t knock out until after TJ.  The whole time I wondered if we did the right thing.  I kept waking up my husband (he could sleep ANYWHERE) and venting.  He shared my concerns.

Following this “night of regret,” was the morning of possibilities!!!  TL woke up at 7:30 and was snuggled up next to his brother.  He crawled into our bed and slept for another hour or so.  We had a little of the complimentary “breakfast” the motel offered and then ate a complete meal at McDonald’s.

Then, we planned out what we were going to do and promptly threw it all out.  We wanted spontaneity and we were determined to get it.  We decided to go up Highway 1 and hit some of the coastal towns.  We saw a lot of Independence Day Parades in these small towns, but decided not to stop for them. 

Instead, we headed for Sea Cliff Beach.  We walked along the beach, checked out the cliffs, and waded in the water.  My husband held TL and let him touch the water.  He loved it so much that as we were leaving the beach, he kept asking for “more touch.”  Then, we got to check out their awesome gift shop that even has an observation pool filled with sea creatures.

Hungry, we began to search out lunch.  We stopped in different towns that we had always wondered about when we drove by, finally deciding on Scotts Valley.  We ate at a great little diner and enjoyed the cool breeze on the patio.

It was time to head back home.  The boys might have had a rough night, but their day was fantastic.  They loved every minute of the adventure and were completely exhausted when we got home—we all needed naps.

What did we learn?  Well, spontaneity REALLY is hard with two autistic kids…but not impossible.  It required a lot of patience and understanding, but I wouldn’t trade our overnight vacation for anything.  Camping, Disney Land, and time-shares may not be in our future right now, but they are not out of the picture forever.  We just have to dare to be spontaneous every now and then!

Article Makes it on Yahoo! News

My article made it into the news section of Yahoo!

http://news.yahoo.com/guide-finding-special-needs-ministry-san-jose-area-192400618.html

Mad at Autism

I really do try to be understanding to my boys.  I try to be understanding about autism.  I try to be understanding about their behaviors.  I do try.  But there are some things that just throw me.  They seem small at first, but when they sink in they rock me to the core.  Like today.

My youngest, TL broke his sandals tonight, so we needed to go out and buy him new ones.  It had to be tonight because he has therapy tomorrow and then goes to school.  We decided to walk as a family to a shoe store about a ½ mile away.  We put TL in his stroller and went on our way. 

After going through millions of pairs, we found the one for him.  We paid for them, put the box under the stroller, and started home.  About halfway home, my husband realized that TL had been dragging his foot on the street and sidewalk.  He had worn a hold in his sock and cut open his big toe. 

Why did this throw me?  I mean he just dragged his foot.  No big deal, right?  The big deal was that he didn’t feel it happening.  Something that would make you and I limp home was nothing to him.  How far would he have gone like that?  How big of scar? 

He probably didn’t notice because he always toe walks.  This wears down his toenails and toughens the skin on the tips of his toes.

I started crying on the way home.  I don’t even know why.  Maybe it was the fact that he didn’t realize he hurt himself.  Maybe it was the fact that he needed that “sensory input.”  Maybe I was just mad…mad at autism.

Gosh, how many years have I seen these things that autism does?  How many years of therapies, IEPs, books, articles, assessments, and explanations?  And still, I am mad at autism. 

I know I will feel better later.  I will try to look at the blessings my boys are.  But, darn it, right now I am so mad at autism

Walking By Faith

“But when he saw that the wind was boisterous, he was afraid; and beginning to sink he cried out, saying, “Lord, save me!” And immediately Jesus stretched out His hand and caught him, and said to him, “O you of little faith, why did you doubt?” (Matthew 14:30-31)

“You of little faith”…gosh, He could be talking to me!  So many times I have felt like Peter:  like when things look difficult or when choices seem impossible or when I am “rocking the boat.”  Sometimes, in those moments, I crumble from the fear and the worry.  I start to sink in those rocky waves.

But Paul reminds us, “…we walk by faith, not by sight” (2 Corinthians 5:7).  Walk by faith?  Yeah, walk by faith.  God is there for me and will always comfort me.  He has been where I have yet to go and knows every twist and turn by heart.  I simply have to walk by faith.  “Simply,” yeah right, anything but.

Yet, this is what my family has been doing this past month—walking by faith.  So many changes have come our way and there are dozens of unknowns that could cause a summer full of sleepless nights.  Yet, they don’t.  We have decided to walk by faith.

God will take us where we need to go or show us where we don’t.  There will be missteps and doubts along the way (we are human), but I hold strong to walking by faith.  As we embark upon middle school for TJ, prepare for TL’s transition to school district services, and leave the church we have called home for 6 years, we walk by faith.

We just ask one favor, though:  keep us in your prayers.

Like a Butterfly

Have you ever caught a butterfly in your hands?  You slightly open your hands just a crack to let the sunlight in and you admire the beautiful colors of this amazing flying insect.  It is so hard to open your hands all the way and let it fly, but that butterfly is starting to tickle.  You know it wants to fly.  You let it go and watch it fly into the sky through beams of sunlight.

I have two beautiful butterflies of my own that had to take a little flight of their own last week.  Trust me, I am no where near letting them journey into the sunset, but they did need to “spread their wings” a little this week.

My youngest, TL, started a center-based program for autistic children on top of his home-based program.  He stays at the center for 2 hours on Mondays, Wednesdays, and Fridays.  It is very—almost eerily—similar to the program my oldest was in 8 years ago.  There is even a two-way mirror, so parents can observe their children.

But, I don’t stay and watch.  I did that with my oldest.  I sat in a small, airless room with other moms and watched as TJ played, fought, progressed, and regressed.  I wouldn’t trade any of that time, but I know now that the biggest indicator of his progress is how he does outside of the classroom. 

Sure, he can sit in his chair at circle time, but can he sit at home to get his shoes on?  Sure, he can play nicely with a kid in his class, but how will he do with the new boy at the playground?  Those milestones happen outside of the school, when he makes the connections between school and “real life.”

I have changed things with TL, not because I felt we did anything wrong, but because he is a different child and his “flight pattern” is different, as well. 

Now, TJ’s flight this week was quite exciting.  He got the opportunity to present at a student-to-student conference for gifted children.  The conference was at a major college campus, which added to the excitement –and the pressure.

TJ did his presentation on Garfield—the cat, not the president (I don’t know why I feel the need to clarify that!).  He had done a presentation last year on a different topic, but this year I felt like I didn’t hover as much.  I let him take the lead.  I had to have confidence he could handle the audience.  I had to let him fail if need be.  I had to let him fly.

And fly he did!  He did great with his presentation and had a fantastic time.  My two butterflies spread their wings this week and fluttered around in the sky.  They have earned their flights and have proven they are ready for more time out of my hands.  The question is, am I?

The Celebrated First Debate

They always say you are not truly married until you have your first argument, but what about that first argument with your child?  Most people think of when their child yelled “no” in the middle of the store and collapsed into a tantrum.  I am talking about that first debate, where they let you know they want something different.  I had that the other day with my youngest, TL.

This morning, when I was still groggy, he came up and said “Sweetie,” trying to wake me up.  Now, this is what my husband affectionately calls me, so I knew where he was getting it.  A little while later, he was in his highchair eating breakfast and I decided to make sure he knew to call me “Mama.”  So, I said, “I’m Mama, not Sweetie, okay?”  He replied, “No!  Sweetie!”  I countered with, “No.  Mama!”  We went on for many rounds—and cracked up the whole time.  Meanwhile, my husband and I kept giving each other looks of amazement; we couldn’t believe he was doing this.  There was no echoing, no rehearsed sayings—this was all spontaneous and appropriate!

I know the laughing will probably come to bite me in the behind in a couple years, when the cute debating turns to annoying whining, but it is worth it.  I celebrate the small things, because for my boys there is nothing small.  They work for everything they do and deserve to be praised for it.  But most of all, I praise God for giving me the opportunity to raise these terrific little men.

When a Chair is More Than Just a Chair

The other morning, I had the pleasure of watching my sons make up a game with 2 kitchen chairs.  Sounds pretty mundane, but for me it was thrilling.  With the eight-year age gap, there is still a difference in how much TL understands about the games, but he was definitely a willing participant.

They charged at each other like chair bumper cars, in a game that TJ called “Trojan War.”  They laid the chairs down and made a fort.  They turned those chairs into so many things and had the best time. This session of make believe is so common in most houses, but not mine.  It made my morning seem brighter and more hopeful.

There have been quite a few times this week where I could actually forget my sons were autistic.  When TL was having a therapy session recently, it seemed like he was just a little boy playing with a teacher.  I didn’t see the struggles and behaviors that usually make it painful to watch. 

These little glimpses of normalcy are probably what keep me sane.  I can’t survive in autism mode 24/7.  Not only do I need to see my kids being normal, but they need to feel that way sometimes too.  There is nothing wrong with being different, but there is something difficult about feeling different all the time. 

All I know is that I will take these moments as they come and cherish my sons as the blessings from God that they are.