One of the hardest things to explain about Ryan is his communication issues. Every time there is a need to leave him with someone for any amount of time, this is one of the biggest concerns. He looks like an almost eight year old, and he is a seven year old. At this age, he should be talking up a storm. He should be bugging us all the time with stories of this and that, and asking questions about everything under the sun. Instead, our communication looks more like this:
Me: "How do you ask for what you want?"
Ryan: "May I have some milk please?"
Me: "Yes, you may."
Things get a bit different, however, when the answer is no.
Ryan: "Going to go to the hotel?"
Me: "In February, son."
After I've answered that question, a few things can happen. One is that he'll accept my answer and walk away, which is usually what we want. The others are a little more frustrating. The usual, I'm afraid, is for him to ask over and over and over until I ask him to please stop asking. At that point, he will either accept my request quietly or will respond with a negative behavior. Other times, when I tell him "in February" I will see the negative behavior right away.
What is negative behavior? Everything from crying to hitting himself to screaming.
Here is where a common myth about kids with autism and several other diagnoses desperately needs demystification. These kids have not necessarily been handed what they want every time they want it. In our house, screaming, crying, and rudeness get you nothing. Nada. Zilch. We have endured day-long meltdowns over not getting what we want when we want it. In the case of every child on the spectrum we know, I can confidently say that this is the case. They are not given what they want. They are not rewarded for screaming, hitting, and other undesired behavior.
I can honestly say that I've never taken my son to the hotel just because he screamed for it. There are times that I've thought it might be easier to just do it, but I haven't. Our entire lives are colored by autism in this way. We have to be prepared to ride these storms through without losing it ourselves. We simply cannot give in. Giving in once ruins the whole thing.
The lion's share of the time, we do not simply sit down to converse. To talk about the weather, that cool bug on the sidewalk, how God made rainbows... or how Christ loves us. We talk, he stares. Or he hops up and runs off.
But we talk anyway.
We read anyway.
We keep as much of a normal existence and life as we can at home, so that he'll have a greater chance outside our home.
But it's hard. It's hard to look at him and ask if he enjoyed something, especially something we sacrificed to be able to do for him, and have him hum and stim, or simply stare. Sometimes he'll come back with a "you like the *fill in the blank*" or he'll say "yes" or "no" if we ask him "yes or no" after the question. Sometimes it cuts right to your heart.
But we do it anyway.
Then I realize how seldom I truly sit down to have bible study and prayer time. I forget to acknowledge the sacrifices Christ made for me when I do pray. As I walked by the boys' room when Eric was putting the kids to bed, I heard him praying with the kids. In addition to thanking God for everything under the sun, I heard him plead something I forget. Hearing those precious little voices repeating after their father is a soft yet stern reminder to a busy heart.
Forgive us of our sins. Teach us to love each other.
The God of the New Testament is the same as the Old. He hasn't changed, and won't. He will continue to call to us. For me, it's the quiet reminder from my heart to pick up my copy of scripture and see what truths are there... to hear the Father's voice, and then answer back with my life. It's not magic voodoo juju to open the bible. It's not a talisman, it's not a superstition. It is a guide, a stay, a lighthouse. Running my life without a relationship with God is like zip-lining without a cable. Straight to the ground.
One of the biggest lessons I continue to learn from Ryan about God is that He is a parent. He wants to hear from me. He wants me to listen, and then tell him what I've learned. He even wants to know what I think about what I've learned. In the same way I can understand Ryan better than anyone, He can understand my most confused cries and meltdowns. Though I may not be able to arrange my thoughts into words the rest of the world can understand, I have the promise that He gets it.
Thanks be to God for his patience and long-suffering with me... and may my life reflect that very thing to others!