Kindergarten Graduation

Jackson and his teacher

Super big smiles. Bebopping his little head through the songs. Of course he knew all the words, he LOVES music and has an uncanny ability to memorize things quickly. He was so proud and so happy to finally be a first grader. So proud he was still talking about it when he went to bed tonight.

My autistic son just graduated from Kindergarten, and loved every minute of the ceremony and reception. So why am I so overtaken with fear and sadness? Why am I sitting here hoping that typing this out and sending it into the void of cyberspace will bring some comfort? Should it hurt like this? Maybe it's the struggles we went through this year. Maybe it's the fear of the unknown, facing another school, another schedule, another transition. Or maybe it is yet another sign that I'm not as well adjusted to his diagnosis and all these changes as I have made myself believe I am.

As I look to others further along on this journey, I see no sign that this burden gets easier to bear as our children grow. Why do I expect it to get lighter with every milestone? Why do I get disappointed when a goal met often gives way to two more we didn't see. Am I still holding on to hope that autism is curable, that I can fight this fight and win, that I can somehow put this diagnosis in the grave and leave it behind? That would explain feeling like a failure when faced with the fact that he isn't cured, that we haven't left autism behind. That would explain the desperation and anger that wells up when I look back at how much we have fought with so little to show for the struggle. It would explain the disappointment when I'm forced to accept that victory for us isn't measured in hearing something like "you are now autism free" but in slow irregular progress. Progress toward what exactly? What is the end goal? For him to be typical? Dare I say normal? Is that really what I want? To be able to stand on the other side of this and say to myself and all those around me, see I did conquer this. To feign humble acceptance of God's plan only to harbor a desire to prove I won't be defeated by this nameless faceless enemy, that I will overcome it and free my son from its grasp, that I'm strong and capable and self sufficient, the perfect mother, chosen for this trial because I am up for the challenge. Is that what I want, to prove I'm not a crumbling mess afraid of first grade? Is it all about me, and this guilt I can't shake, that somehow there is more I could do, more I could try, more I could be?

Maybe I shouldn't hit the publish button on this one. I don't have any answers tonight, only questions. God, help me. I can't seem to accept my own humanness much less the diagnosis given to my son four years ago. Four years, so long but so short. Oh to learn to accept my failures and shortcomings and rest in my Savior's success and perfect provision. Oh to have nothing to fear and nothing to prove. God, help me.

I'll Stand

Jackson and me at his 6th birthday party

About three years ago, with more questions than answers, I found myself overwhelmed with worry and fear. Jackson's diagnosis was still so confusing. What is autism? Pervasive Developmental Disorder - Not Otherwise Specified, is this English? What is the autism spectrum? What does this mean for him? What does this mean for our family? What does the future hold? Can I handle this? Speech, occupational, social, or ABA therapy; public, private or home school? How do I know what's right for him?

One morning, in an attempt to calm my spirit while I tackled the chaos I knew I could handle, my kitchen, I turned on some music and set to work. My youngest was sleeping. My oldest was at school, and Jackson was playing with his blocks in the next room. The Stand by Hillsong United came on, and I was overcome. In one of those precious moments where the presence of God in my life was tangible, I stood, hands raised, head bowed, tears flowing, unable to sing. The words echoed in my heart.

"You stood before my failures.
Carried the Cross for my shame.
My sin weighed upon Your shoulders.
My soul now to stand.

"What could I say.
What could I do,
But offer this heart, O God, completely to you."

  Then I heard this tiny voice beside me, hands raised, head bowed, singing what I couldn't.

"I'll stand with arms high and heart abandoned
In awe of the One who gave it all.
I'll stand my soul, Lord, to you surrendered.
All I am is Yours."

I immediately crumpled to the floor. I don't think I've ever hugged him tighter. He patted my back and went back to playing, but in that moment, He and God gave me something I couldn't live without, a vision. One I have seen and heard in every set back we've faced. "All I am is Yours."

We found out this week that Jackson cannot continue at the private/home school program he's been attending this year. They say he isn't engaging and participating like he should, and they don't think he will be able to handle first grade at their school. I've been surprised at the level of pain this decision has brought me. I burst into tears at Target. (Yes. I know. Poor stocking person didn't know what to do.) I've lost sleep and struggled to function properly with this constant ache in my gut. Why? There was a point when I surrendered all my dreams for Jackson to the vision God gave me that day. "All I am is Yours." He belongs to God, and his diagnosis is a special calling on his life, a purpose that only he can fill, a work of God. I think this set back has brought more pain than it should because, little by little, I had begun to take back those dreams. He's been doing so well for so long, I started thinking the worst was behind us, that everything was going to go according to plan after all. Once again, I'm overwhelmed with questions. Some new, some old, all without answers. And, once again, God has brought to mind that vision.

This morning, I had my iPhone on shuffle while I attempted to tackle the events of the day, The Stand came on again. The image of Jackson's little hands raised and head bowed, the sound of his tiny voice singing the words in 3 year old delayed speech, this vision reminded me who he belongs to and in whose hands his future lies. One more emotional outburst, then peace.

I don't know if I can handle what lies ahead, but I know God can. One more time, I'll surrender my heart to Him and let Him lead the way. "All I am is Yours." So, I'll stand.

Auto Reflections

My schedule stays pretty full. Between pre-school for Jackson, homeschool/class for my older son, three therapies a week, all the shopping and cooking, caring for my 1 year old, sports, church, etc. Things get pretty hectic. There are many things I don't get to do much anymore like watch tv, go to the theater, even going out to dinner has become a near impossible feat with Jackson's allergies and our schedule, but there is one thing I miss more than any other. That is the ability to choose time to spend on spiritual things as I saw fit.

I accepted a challenge in college to read the Bible through every month, and thought I was really doing a great thing. It was great, but I soon had to alter that plan to every three months due to the other studying I had to do. Still every three months was pretty good. A lot of my reading was done on auto pilot, especially through the books that don't read so easy (you know the ones I'm talking about). I can look back and see where I was going through the motions but not really gleaning what I should. Still the Bible actually became one of my favorite books to read, and often was hard to put down.

That challenge had to be altered again after I got married and was now working full time and caring for my new marriage, but during my first pregnancy, when my husband was on call or working over the weekend, I began reading in big chunks again. I would read out loud so the little guy could hear. I have such wonderful memories of what God showed me during that time.

Fast forward to the day my oldest son was born, and those days of reading my Bible, listening to sermons, playing my piano and singing in worship, even just getting to church easily, those days were now gone. I was not prepared for the shift. I really struggled with depression and emotional craziness. Some due to the baby blues women often get after giving birth, but I believe some of it was going from feasting to famine. I was going through withdrawals on top of no sleep, hormone insanity and all the new demands. I remember a deep longing to return to my Bible and thinking, "if I can just get him sleeping through the night..." or "if I could just get him weaned...." I kept thinking those opportunities would just happen again. Well, after two more kids and an autism diagnosis, that day still hasn't come. What I've had to do is make some trades and some interesting improvisations.

I've given up what little bit of tv watching I had left. I've stopped obsessing during the kids' nap time over cleaning or cooking, and began reading my Bible or other spiritual books or listening to a podcasted sermon during that time. Many times I've read myself to sleep, something I would have been appalled to admit before kids, but now I see it as God granting me much needed rest, almost like He's telling His little girl a story and lulling her off to sleep.

My favorite adaptation is what I call auto reflections. Jackson has two half hour speech appointments a week. When we first talked about the schedule, I was a little irritated that these were the only spots she had open for him. I wanted her to block the two segments into a 1 hour slot so I could do something with it, but it was this or nothing. Now, what am I going to do with 30 minutes? There isn't any time for shopping or errands. All I really can do is sit in the parking lot and wait. Then the Holy Spirit opened up my mind and heart to using that time to read, reflect and pray. I've found I can get a lot more done in those 30 minutes than I ever thought possible, and while Jackson gets speech therapy, I'm getting spiritual therapy.

So, while I sat outside the school today getting my spiritual therapy, I decided to post this discovery. I've wasted so much time stressing over not getting enough time with God. Knowing that I needed Him to help me with my often short fuse and anxious, worried heart, and I just kept stressing and thinking there was never going to be enough time. I needed to alter my expectations and open up my mind and heart to a different way of spiritual life.

The longer I'm at this, the more I think it's not about setting aside a certain amount of time or reading a certain amount of pages or getting to that special emotional place in prayer. It's more about desiring God and being open to the time slots He gives you. God doesn't care how much WE do, but how much we let HIM do. Opening our hearts to his work, asking for His filling and help, and making ourselves available when He makes time for us, this is how we keep growing during these hectic seasons of life.