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.

Lay It Down

I'm not exactly sure how to put this into words. All I know right now is that I need to. It's eating away at my soul and threatening to unravel my sanity, at least what little I have left.

When Jackson was diagnosed with PDD (on the autism spectrum), I remember feeling like I was in over my head. First food allergies, and now this. I hit hyper advocate mode. I had to do everything in my power to get him all he needed to succeed in life. I spent hours researching and learning about his diagnosis, and countless more hours experimenting with what I learned. We got him into Babies Can't Wait (a Georgia program for special needs children under 3), got him into therapy and started wading through insurance denials and loop holes. At 3, we put him in a self contained autism class in a public school (oh, the trepidation I felt watching my 3 year old son who could barely talk being walked into a gigantic elementary school by a total stranger) plus two school therapy sessions a week. We struggled through the daunting process of applying for the Katie Becket Deeming Waiver for Medicaid (a life saver, otherwise, we wouldn't have been able to afford therapy). For a while, he was getting two private therapy sessions and two school therapy sessions a week. We finally figured out his diet and got his stomach issues under control. He began to develop at an exponential rate. Milestones were finally being reached. We were working closely with a developmental pediatrician, a psychologist, and multiple therapists and teachers. It was so amazing to see. Part of me wanted to believe we were 'curing' his autism one therapy session and doctor visit at a time. I started thinking he was going to be just fine. I started feeling guilty complaining about his diagnosis. I started feeling like I had nothing more to offer other parents we met at the beginning of our journey. I started feeling guilty as we saw Jackson pulling away from the other special needs students in his class. I quit talking about our life and ongoing struggles with his diagnosis. I let those relationships that sustained me at the beginning of this journey fade into the background.

We mainstreamed Jackson for preschool, and he was doing so well that we decided to put him into a special homeschool satellite program with his older typically developing brother. We were assured by his therapists and preschool teachers that he would be fine. The public school teachers and therapists would have mainstreamed him if we sent him there. So, we thought it was a good idea. At the very least this would ease him into the full time school thing since he would be going to class twice a week and at home with me the other days. We thought this was the best option for him. Now after struggling through the first few months of the school year, I'm beginning to think we were wrong.

Once again, I feel like I'm in over my head. We've had problems with his behavior in school from day one. He's struggling with things we thought we had conquered long ago. His differences are obvious in a peer setting. He struggles to make friends and be appropriately friendly. He struggles in class. There are so many details that go into the dynamic of the classroom, the teacher, the structure, the way the classroom is run, the way Jackson feels about school. It could be any one thing or all of those details compounding on each other. I know this particular classroom isn't working for him, but I'm so completely lost about what to do. The options aren't the same now. He didn't speak like a 3 year old should speak; so, speech therapy was the answer. He had low motor skills and body awareness; so, occupational therapy was the answer. He had violent reactions to some foods; so, an elimination diet was the answer. Now, he can't focus, doesn't properly interact with peers, refuses to obey his teacher, refuses to do his work in class. We've tried creative discipline, rewards, medication, diet, sensory stimulation/calming techniques, meetings with the school. We can't seem to get a handle on it. We've been wading through all the education options for our county, and it's almost as difficult as all the insurance and medicaid struggles we had early on in our journey. All homeschool isn't the answer because he NEEDS peer interaction to grow socially. All private isn't the answer because there's no way we could afford it on top of everything else. All public is scary given the class size and the few options he has left in the school system (due to his high rate of function). It's like we're stuck in the middle, in no-man's land.

At this point, the weight of this burden has all but silenced me. Even in prayer, all I seem to be able to get out of my mouth is, HELP! Those of you who know me well, know that asking a human for help is nearly impossible for me, and accepting help offered is almost as impossible. I kind of feel like a spoiled child. I don't want to reach out for help, I want God to miraculously intervene and make every problem go away. I'm not sure exactly where I got the idea that this is how things work, or the idea that I need to maintain some kind of Rockwell white picket fence image at all costs. I want it all to be perfect, and when it isn't, I want it to at least look perfect.

I can share spiritual burdens and struggles fairly easily, but the burden of a mother, that one I tend to prefer carrying all by myself. The thought of sharing it or letting it go is completely terrifying to me. I can't see how anyone else could serve this child and this purpose with the same kind of reckless abandon that I will. He's MY baby, and that makes his struggles my struggles. That makes his problems my problems. That makes his life and all that goes into it my responsibility. That means I have to carry it all because sharing even a little part means letting go of too much.

"Cast all your care upon him; for he cares for you." - 1 Peter 5:7

So, if I were talking to myself as a friend, being completely honest and candid, I would probably share something like the above verse and tell my overburdened self to share it with God, because Jackson is ultimately HIS baby. Jackson's struggles are His struggles. Jackson's problems are His problems. Jackson's life and all that goes into it is His responsibility. That I belong to Him in the same way, and He will serve me and this child with more reckless abandon than I could ever imagine. He already has.

So, in an attempt to listen to the part of my brain that is still working, I want to share part of this burden. I'm going to type out the prayer on my heart right now, and hope that if you're reading this post and feeling the weight of a similar burden, that you can pray along with me.

"So, Man of Sorrow, acquainted with grief, I need Your help and the prayers of Your people.

I, once again, need reminding that I'm not alone. That some transparency could be applied in this area of my life to my gain and to the benefit of others around me struggling with carrying a burden too big for them.

I need to remember that no one has the perfect family. The image I remember idolizing on the cover of the Saturday Evening Post is a painting, and frankly, no one could possibly carry the turkey on that cover much less the burden of maintaining that image.

I have problems. My children have problems. That doesn't make me a bad mother, it just makes me human.

I can't walk this path alone. I need You and those you have placed beside me. I need them, and they need me. Our burdens may be different, but they were all meant to be shared.

I need to remember that You are ultimately the only one capable of carrying my burdens. That laying them down at Your feet is the only hope I have of ever standing straight and tall as Your child.

I need you. Jackson needs you. Please give us the answers we need, and lead us through this maze of life to the destination You have prepared for us.

Help me to rest in your love and provision and allow you to carry me and my burdens.

I ask all this in the name of my Savior, Jesus Christ..... Amen."