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.

Blessings

So, I have decided to move past the anger talked about in some of my recent blogs.  Don’t get me wrong, I still maintain my positions, but I refuse to let these issues take my focus away from God and my children.  Reading through 1 Corinthians, I am reminded that there have always been misguided people, there have always been divisions, and there have always been judgments.  What I am responsible for is how I behave and react.

I have decided that my last posting for April will be on all the blessings that our family has received this month.  It really has been a blessings-filled month!

·         We found a local church that offers free respite days for parents of special needs children.  My husband and I were able to enjoy a romantic night out and the boys had a lot of fun.

·         TJ went to science camp—and survived (so did we)!  More than that, he came back with a lot of great stories and new experiences.

·         TL was approved to start having some services at an autistic center on top of his in-home ABA.  This means he will get more chance to interact with other children and gain social skills.

·         TL can now identify all numbers 1-9 and letters A-D.

·         TL said his first two-word combination (that was not an echo) last week, “bye-bye, Daddy.”  Since then, he has put more words with “bye-bye” and has begun to combine words with the phrase “all done.”

·         On Saturday, TL said his brother’s name.  Usually, he has called him “brother,” which is cute, but TJ really wanted him to say his name.  He got that wish and TJ was over the moon!

·         On Sunday, we enjoyed a wonderful Easter morning and TJ adjusted well to us helping a different service at church—although he said it was little too wild for him.

·         After church, we took a spontaneous trip to Monterey and the boys had a great time at Dennis the Menace Park.

·         And just today, TL got up and after having a diaper change by Daddy, he came and gave me the biggest and longest hug he has ever given me.  The whole time he said “Mommy, Mommy.”  He finished off by giving me a kiss and another short hug.

God has blessed us this month and every month.  Focusing on these blessings is how I choose to react .

Autism: We Need Acceptance and Training—Not A Cure

As I write this, I am fuming mad.  I am so filled with anger and frustration and want to find a productive way to channel it—so, I writing in my trusty blog.  Why am I angry?  I am angry at the parents of autistic children that insist on using biomedical treatments that claim to cure autism.  I am tired of hearing how autism is caused by vaccines, gluten intolerances, gut problems, mercury poisoning, blah, blah, blah…

I am tired of being mocked for believing that my children were born this way—and it is just how God designed them.  I am tired of there being a lack of support in the Christian community for evidence-based therapies in autism.  (This is not a slight at any of my friends, as you guys are not the problem.)

I did a search yesterday—looking for online communities, blogs, and books by Christian parents—and was appalled that they all supported biomedical interventions.  They all supported the crazy claims and the unproven causes.  They all claimed to “cure” or dramatically improve their children using alternative medicine.

Now, I am not going to throw everyone under the bus that uses alternative medicine, but I don’t believe all of it honors God--especially when it claims to cure a developmental disability.  So much of it is tied into the New Age movement and mysticism (and yes, I do have personal experience with this and am not just passing judgment).   

A great quote I read somewhere was, “You know what happens to alternative medicine that is proven true?  It becomes medicine.”  There are so many conspiracy stories about the government covering up the supposed vaccine link.  This doesn’t even make sense.  Medicine is a business and if modern medicine truly believed that alternative therapies worked they would be pushing them and profiting off them instead.  But the research is just not there!

Sigh.  I am just tired.

I love my sons just the way they are.  TJ has such a different way of looking at the world.  I can’t imagine taking that away with a “cure.”  There is all this talk of gastrointestinal problems in autistics and how they need special diets to relieve the pain they are in.  This is part of a movement that claims there is this connection between psychology and your gut. 

I always wonder if these parents talk to their kids (the ones that have verbal children).  I have asked TJ if he has any pain. No.  Do certain foods bother him? No.  And what does he think of people that put kids on these diets?  Well, he is blunt and he thinks they are stupid (his words).  He asks me why the parents can’t just accept the kids.

Aha! Acceptance!  Why can’t we accept them?  Sure, give them the tools they need, like speech and social skills, but accept them.  Don’t worry about placing blame.  Don’t worry about why they are autistic.  Just accept them.  Isn’t that what we all want? To be accepted?  How are my sons any different?

I’m still angry and I am praying God shows me how to let the anger go.  I want to be at peace and shrug off the crackpots and misguided.  I want to focus on my children and raising them to be good disciples in Christ.  But I also want them to be free to be themselves.

By the way, if anyone knows of a Christian organization or author for autism that does NOT support biomedical interventions, please pass it along to me.