Wednesday, October 16, 2013

Autism: The Invisible Diagnosis

This post has been rolling around in my mind for a couple of months now. I've been so close to writing about this several times, but I just didn't feel quite ready to share my thoughts. I once heard Beth Moore say that the Lord often communicates to us in the secret place and He doesn't want us to share those secrets until the appropriate time. I feel that exact way about what I'm going to share tonight. This "secret" between me and God wasn't ready to be told. My feelings, fears, frustrations, hurts - none of those things were ready to be shared until I could take a little time to process them. I needed to listen to what the Lord was teaching me before I could share with others. I think I'm now ready to share this story, so here goes...

Our precious little Jonah was diagnosed with autism this week. We've been expecting this diagnosis for a few months now, so we've been able to sort of prepare our hearts and wrap our minds around what this will mean. But actually seeing it on paper was, well, devastating.

We have known for several months that something wasn't quite normal with Jonah's development. His language is characterized mostly by echolalic speech. What this means is that pretty much everything he says is something he is repeating from another source, whether it's from television, a book, or something Peter or I have said. It's almost like he has a Rolodex in his brain, and in each situation he flips through it to find a phrase or sentence that he has heard before. The amazing thing is that it almost always applies perfectly to the situation. I'm not sure how his little brain works, but to me it seems pretty miraculous that he can flip through all those mental files and come up with what he should say.  Other red flags for autism that we noticed were that he has significant difficulty transitioning from one activity to the next resulting in major breakdowns, he doesn't exhibit eye contact, and he prefers to play alone rather than with other children. All of these factors kept pointing to autism in my mind, so I knew this diagnosis was coming. But it doesn't make it any easier.

Peter and I had dreams for Jonah and some days we feel like those dreams have died. Almost like we are in mourning. I wrote about it in my journal:

"I need to look at this loss as a sacrifice of praise to God. We have to make a choice to trust Him even when we can't understand why He requires some of the things He does. I just want Jonah to be normal. Why has God allowed him to struggle which then leads to the whole family struggling? I had dreams for Jonah. Do I have to let those dreams go? Is that supposed to be my 'sacrifice of praise?' But I know that God wants to see if we're willing to give up what we love to Him who loves us more."

Some days I feel like a normal mom with a normal life. Other days I feel extremely sad and riddled with anxiety. But over the past few months, I've noticed a couple constant themes at church, in my quiet time, in books I'm reading, in devotions I'm doing with Brienne. The first theme is that God loves us. I know that He is telling me, first and foremost, that He loves me. I have heard this over and over from Him during the past few months. The second thing He's been telling me is that I don't have to worry because He has a plan for me, for Jonah, for our family. This plan may not look like what we had pictured in our minds, but it is still His perfect plan for our little family. That doesn't mean the journey will be easy, but it does mean that God will carry us through when we feel like we can't get through another day.

I have experienced significant anxiety over Jonah, particularly this fall when he started preschool. I worried about so many things. Will his teachers be able to see him, not his behaviors? Will they love him through the difficulties? Will he be able to make friends? Will he even like school? And the Lord has been faithful to give us little glimmers of hope - a precious teacher who loves Jonah like one of her own and who prays for our family, Jonah learning to participate in circle times and group activities, the way he is learning to interact with other children. Small, almost insignificant things to those who don't understand autism, but huge things to us.

We have also seen God's faithfulness in other areas. He has given us glimpses of small improvements.  Again, these are things that would seem so insignificant to an outsider looking into our situation but they mean progress to us:
           Jonah jumping in our bouncy castle which has caused major anxiety for him in the past;
           Jonah telling me, "I hurt my toe." This statement is significant on so many levels - he was able to indicate pain, which he generally doesn't feel; he used appropriate pronouns (I and my), which is very difficult for him; and the statement was an original thought, not something he heard somewhere and then used in context.
           Jonah leaning over to kiss Vivienne, without being prompted to do so. That moment was so special and heartwarming to me and it renewed my hope that maybe one day he will feel what it means to love someone.

Although this is not the road that we would have chosen for our family, Peter and I know that God is faithful. One morning as I was sitting in the playroom and having a particularly hard day, I looked over to a children's bible laying on the floor. It was opened to the story of Jonah, and one sentence jumped out at me: "But God did not let Jonah drown." No, God did not let Jonah drown in the raging waters 8000 years ago, and He is not going to let my Jonah drown in his autism. The Lord will faithfully walk beside Jonah, beside our family, through this storm. And we will give Him the glory through it all.

Thursday, October 10, 2013

Welcome to the Zoo

Apparently I've been neglecting this blog lately. It hasn't been intentional. It's just that my brain has been so full of mush that I haven't been able to form a coherent thought. I attribute this partially to having three kids who are constantly clamoring for my undivided attention. And partially to getting older.

I recently celebrated a birthday. It wasn't one of the "big" ones, like 30 (I wish) or 40 (which is too close for comfort), but it was still a birthday. And birthdays aren't super exciting after you hit 21. But apparently, it was a big day to someone because I received a packet of glucosamine chondroitin in the mail from a random drug company. It apparently improves joint health. I think I should be offended. Now, granted, I have been walking around a little stooped over due to a sore back, but come on. (To be honest, I feel like someone has been peeking in on my life, and frankly, that's a little scary.) "Happy Birthday, Old Lady."

On top of feeling a little older, some days I also feel like I live in a zoo.  And I don't mean a happy, relaxed zoo where the animals are properly restrained and contained. For instance, we have a little pop-up tent in our playroom that the kids like to play in. But yesterday, I guess Jonah thought he was part of the WWF because he was DDTing the tent. (Is that the correct wrestling lingo? Obviously I was not a WWF aficionado growing up.) Anyway, basically Jonah was running, jumping, and slamming his body on top of the tent. I'm not sure how much more it can take. (And by "it," I mean me.)

Jonah also loves to jump on the furniture. It's almost impossible to prevent him from jumping. He likes to say, "But I need to jump." And maybe that's true. He can jump from the twin bed in Vivienne's room almost to the door. We're talking at least four feet. I'm pretty sure we will be spending some quality time in the ER with this child. (And, by the way, I used to talk about friends who allowed their children to jump on furniture. I'm. So. Sorry.)

And anyone with more than one child knows about sibling rivalry. It is already starting with Jonah and Vivienne, and some days I feel like all I do is referee. Vivienne loves to irritate Jonah by taking something that he is playing with. And sweet Jonah isn't sure what to do about it. He obviously doesn't want to snatch it back and hurt her, so instead, he comes running to me so I can rescue his stolen toy. Super fun.

But life isn't always crazy. Today Jonah helped me vacuum the bedrooms. Now granted, it took about four times as long as it should have. And the vacuum freaked Vivienne out so badly that she scooted away, screaming her head off. Which was actually kind of funny. (Does that make me a bad mama for laughing at her terror?) Anyway, Jonah was very sweet and helpful. And he was proud of himself for being such a great helper.

While Jonah was helping me clean, though, I realized something about myself. I have a very difficult time accepting help from others. I've always thought of myself as pretty independent, being self-sufficient, especially when Peter is deployed. I guess I never wanted him to worry that I couldn't handle whatever life threw at me. But lately, I feel like life is throwing me a few curve balls and I need to be more open to asking for and receiving help.

This is not a new concept. It's actually biblical. Scripture repeatedly tells us to love our brothers and sisters, to share with them, and help meet their needs. Galatians 6:2 tells us to "bear one another's burdens" in order to fulfill the law of Christ. And Philippians 2:4 says this: "Let each of you look not only to his own interests, but also to the interests of others." This verse doesn't give us permission to nose our way into our friends' business, but it does instruct us to look out for our Christian sisters and brothers. And if we see a need that we can meet, we must offer our assistance.

I know that I am guilty of having tunnel vision where all I focus on is what I see right in front of me. I don't always look around to see how I can help friends who are struggling. And frankly, I think lots of my friends, myself included, like to pretend that everything about our lives is great. We don't want others to know that we are struggling in our marriages, or we are having difficulty with a particular discipline issue with one of our children, or our finances are a mess. We just put on a happy face in order to mask our insecurities and our difficult issues.

But what if we all decided to take off our masks? What if we decided to let a few people into our not-so-perfect world? Think about the effect we could have in each others' lives. If we knew how to pray for each other, we could intercede specifically for our friends. If we knew a friend was having a hard time balancing children, a job, and housework, we could help out by cleaning their home or doing their laundry one day. If we knew our friends were struggling in their marriage, we could encourage and mentor them. There are so many possibilities if only we would be open and authentic with each other. And we also must be willing to accept help when it is offered.

We are called to love The Lord with all our heart, soul, mind, and strength and to love our neighbor as ourselves. Let's all vow to be more honest about our struggles. Let's allow our friends to see our messes.

I, for one, will be inviting more of my friends into my "zoo." Because, hey, the animals are wild but they sure are cute.