So much has happened in the past month it's really overwhelming:
1. I managed to survive another school year with a full caseload and all my paperwork done ahead of time! Praise God!!!!
2. Our little man finished his first full year in preschool having made 2 really good friends.
3. I was awarded a Certificate of Appreciation from the New England Occupational Therapy Educator's Council-- and got to receive it with my best friend, and my "ASD-mom-mentor-colleague," both in the audience! What a blessing!
4. The little man passed his first level swim class (I mentioned that in my last post)-- in a class for TYPICAL kids!!!
5. The little man was invited to THREE birthday parties from his classmates at school!!!
The list keeps on going...but life is not all about awards and successes. Being out of school and home for one straight week has NOT been easy for my little guy. First we found out that his two really good friends will not be in his class next year. I am heartbroken. That same day I injured my back keeping the little man safe during a major meltdown at one of the birthday parties. So when school got out I wasn't up to my spunky "OT mom" self. Because I slacked off, he has regressed in some of his skills. At one point this week he even said to me, "Mommy, I no like cay-cayshon (vacation)... I want school!" I know he misses the structure and he misses his friends. In my world of public education, most folks count down the days until the end of school...meanwhile in my world of parenting a child with ASD, most folks count the minutes until the return of school. I think this is much more of an issue with kids with ASD than kids with any other type of disability because of the nature of the disorder.
You see, a child or individual with ASD lacks that internal sense of organization; it's part of the neurobiology of autism spectrum disorders. Many lack body awareness due to sensory issues and feel "lost in space." Others, due to their cognitive profile, lack awareness of order/sequence and time (spatial-temporal awareness) and feel "lost in time." For that reason, they depend and rely on external structures like their daily routines. This is believed to be the underlying cause of repetitive and ritualistic behaviors. By doing things the same way over and over, they are trying to get a sense of control over their world that feels completely out of control. It's their way to feel safe. It's been explained to me that without external routines and structures they feel like they are on a free-fall and it is TERRIFYING... hence the increase in the "unusual" ritualistic and repetitive behaviors when things are out of the usual routine. That is why it is so crucial to preview and review any changes to these kids' schedules BEFORE and AS things happen!!!
Here's where baseball comes in: these kids are like a baseball player who is up at bat and just keeps getting tossed one curve ball after another. I can only imagine that after a while, one would just want to throw the bat and scream, "I QUIT!!!" Well, I can say pretty much the same for parenting a child or individual with ASD. Just when you think you've figured things out, ZOOM!, comes the curve ball out of nowhere and you strike out. The thing is we can't say "I QUIT!" Quitting is not an option. I remember when things got the worst with our little man last year... I would cry and sound like I had multiple personalities by saying, "Can't I just put him in a box that says 'up for grabs' and leave him on the side of the road somewhere?" and without even taking a new breath, I'd answer myself, "NOOO!!! Because no one will love him and care for him like I will!" And that's just it: we may want to give up, but we know we are the BEST thing in their lives... we are their mommy/daddy and nothing can change that!
Things start going well again and you think, "I got this!"
You're standing at home plate facing that pitcher again feeling a false sense of confidence because you think you've got it all figured out.
Then curve ball after curve ball (in different directions and at different speeds) you strike out... swinging!
It's not like you weren't trying!
You're exhausted and you feel like a failure.
This time you don't even have the strength to walk away from home plate, much less carry your bat with you.
You just look up and through the tears you yell, "God, I know you know all things and I trust in your promises... But, Lord, I'm just not good at baseball!"
That's when the Holy Spirit steps in and picks up the bat and says, "I got this!" He gently guides your hands... He'll do the work, but you have to do your part, you have to give up control. He's holding you and showing you the way... don't try fighting Him or think you are going to show Him how it's done!
The first pitch is one of those dreaded curve balls.
You cringe and close your eyes... you just can't bear to watch yourself fail again.
Then you feel the swing and you hear, "SLAM!"
You've hit the ball right out of the park!!!
You stand in awe and complete disbelief of what just happened and then another reality hits you:
NOW you have to RUN the bases?!?!?!?
You were worn out even before you picked up the bat!!!
And that's when Jesus steps in and says, "I got this!"
When you think you're toast, He will carry you... the whole way home!
That's why He died for us!
Just like for our kids, giving up control feels like a terrifying free-fall, but it's not. It's a giant leap of faith knowing the Father, the Son and the Holy Spirit are holding us the whole way!
"Being confident of this, that He who began a good work in you will carry it to completion." Philippians 1:6 (NIV)