Fighting the Fog

For the last few years, Josh and I have been navigating what feels like a really foggy road. Parenthood alone is pretty foggy, especially with the first child. What comes next? What should we expect? How should we prepare? react?

Still, when you're driving down the highway in the center lane, it's not too bad. You're surrounded by other cars and there are street lights and you basically just follow the dotted lines and the taillights in front of you. Besides, every map in the world shows the highway. If you get confused, just ask Siri. If you're stumped on a parenting issue, just ask the gazillion other parents, books, blogs, teachers, etc that have raised or taught a normal kid. It feels fraught with danger, but the stats are in your favor.

Then a few years ago, Josh and I started to wonder if we were still in the center lane with one of our kids. We'd encountered some potholes early on - meningitis at 3 weeks, torticollis the first year - but thanks to modern medicine, they seemed resolved by the time he turned two. That's when other red flags started to appear - not talking because he couldn't be understood, not being able to answer common questions. It was SO hard to tell what we should expect, when to raise the alarm. At 2.5, we asked his preschool teachers and were surprised to learn they had concerns, too. We called Tennessee Early Intervention Services for an evaluation. He qualified enough to win the label "developmental delay" and free therapy from the state.

Still, speech therapy is common enough. You help them learn how to talk, and suddenly they start to become an open book. Conversation feeds the cognitive - and everything else. And we did see incredible advancement. Maybe we were still middle-of-the-road; He was just a late bloomer.

Besides, HE IS SO SCRUMPTIOUSLY ADORABLE. SO lovable. So charming. (Except when he's not.) He's smart. He's capable. He's hilarious. He brings joy to our family. And not just to our family - to our community. The impish smiles. The playful habits. The excitement over everything.

For a while, it's really hard to tell you're off the highway. Sometimes I still feel like I've imagined it, like maybe I've made too much of his quirks, or gathered his weaknesses into a list that would make any normal child appear worse off than he is. What if we hadn't done anything different? Would he have risen to meet our expectations? It's almost like my wishful thinking haunts me.

But it's not based in fact. The screening tests, the school district evaluations, the doctors, the therapists, the teachers. They're not spinning the facts or trumping up the data. We are on a different road, and no one knows where it is on the map or what it's called. And it just feels SO foggy.

How can I possibly know which doctors we should be seeing? The pediatrician sent us to the developmental pediatrician who sent me back to the schools (because they do the tests for free) and made an appointment with pediatric neurology. I walked into the neurologists' office confused about what they do and why we were there, only to have her look at me with the same questions. We've seen a pediatric geneticist who measured the width between his teeth and thickness of his fingernails. And that's not to mention the various trips to the ped ENTs last year. And in every case, they've turned to me at some point and said, What do you think? What do you want to do? AS IF I HAVE ANY IDEA. Granted, they've all turned out to be a little more helpful in the long run than I gave them credit for at the time. But I still felt so lost making these decisions, and I'm married to a doctor.

Plus, that's just the "medical" route. When his teachers hand me his Individualized Education Plan (IEP), I might as well be reading Greek. And I was an education major! Then they ask if I want to sign off on it. As if I have an opinion on exactly how many times he should be able to draw a circle without lifting his pencil. I don't even know how to tell if his therapies are helping.

And it all blew up in my face two weeks ago. After three years of extensive services from our local school, we were suddenly told that while issues remain, he is no longer eligible for services. He's too smart. He knows too much. He doesn't qualify under "developmental delay." THIS IS GREAT NEWS. Truly. I wanted to celebrate and stop analyzing him and just hit cruise control for once. He's smart! We can take the easy road. But my whole body was rebelling, shouting at me, Then why does this still NOT LOOK LIKE THE HIGHWAY?? 

Just last week, I sat down and listed the issues that concern me with specific and recent examples of each one. It almost killed me, creating such a partial picture of him (may God spare me from ever having to see such a list of my struggles all in one place). And at the end, I still couldn't tell what to make of it all. He's 5 1/2 now. What is normal for a 5 1/2-year-old? What's developmental stage vs delay? Personality vs disorder? Is there a diagnoses that ties it all together? One universal theory of everything? Have I missed talking to the one professional who could have found the pattern? Maybe we need to explore string theory.

Still, in these last two weeks when I have felt especially vulnerable, God has sent five people into my path to rescue my brain from the muddle of being too close to the situation...
1) A friend with a child receiving special education services in my district.
2) A friend with a child who was disqualified from special education despite his need.
3) A parent who knows the school system and my child enough to see where the wires were crossing.
4) A student advocate from Arc, a FREE service for parents navigating public special education services. I should have called them SOONER. S-O-O-N-E-R.
5) Our beloved pediatrician, who sat next to us in Sunday school, stayed after to discuss, took the documents home at night, and called me after hours to go over it all.

After umpteen phone calls, emails, medical appointments, copying test results, shuttling paperwork around town, and making use of that awful-but-incredibly-helpful list, I can finally see the road again. It's not the highway. I don't know if it ever will be, but it's solid. We're still not certain what to call it, but with some more calls/emails/appointments/tests/paperwork, we should be able to get him the services he needs to keep progressing in the right direction. That's my cautious hope.

Can I see the road ahead clearly? No. Will it be messy? Yes...

• Part of me wants the labels so we can get him the services he needs to be successful. The other part of me hates the labels that make him sound a little less than the healthy, bright, capable, charming boy he is. 
• Part of me wants to keep doing tests till we crack the code and figure out why and how. The other part of me fears what the tests will do to his peace of mind and self-image; it's getting harder to explain to him why we're going to another doctor, another test.
• Part of me is thankful our other kids are sticking to the main highway for now. The other part of me doesn't know how to spread my attention evenly and respond to the differences in effort and achievement as they become more obvious (especially to them).  
• Part of me doesn't want to talk about it for fear people will see him differently. The other part of me knows that people not talking about these things is what makes these roads so much foggier and lonelier.
• Part of me wants to let the professionals tell me what to do. The other part of me wonders if the professionals know what's best for him.

But do I? That's what gets me the most. I feel so incompetent. And I don't even know how to become competent or how competent I should reasonably expect to be. And he's such a treasure. If you know him, you know he lights up a room when he walks into it. He is a joy to have in our home. Please hear me: I LOVE being his mother. I wouldn't trade it for anything. My stress is not about him; it's about me. I don't want to fail him, but I can't be an expert in everything for him.

Eventually, I usually end up where I probably should have begun: Praying. I've been praying a lot more lately. And asking others to pray for me. Because the only way I can really handle the responsibility of being a parent in moments like this is believing that God is in control, that He gave me this child in good conscience, that He loves him even more than I do, and that He won't let me foil His purposes in this precious boy's life.