Neurotypical Kids Are Weird: One Year of Little L.

(I was going to post this two weeks ago, in honor of L's first birthday, but getting a turn on my laptop when I've got a house full of boys on summer vacation is nearly impossible, lol.)

I was prepared for everything possible with this baby . . . except maybe neurotypicality.

I don't think there was ever as much critical thinking that went into having a baby as there was with L. His brothers are on the autism spectrum, of course, so when my husband first mentioned the idea of having a kiddo, I had to think about a lot of things.

First there was a lot of information gathering. My doctor sent me to a specialist who ran me through a full battery of test and history collection. In the end, she said there was only about a 1% chance that we'd have a child with autism. That was pretty good odds. Not that I'd have a problem loving another child with autism--it's just that resources have their limits, and therapy schedules for three children would be much harder to juggle.

But we weren't in the clear, though. She wasn't concerned about autism, but she was concerned about other things, like Down Syndrome, because of my "advanced maternal age" (that was a fun term following me along on my medical charts throughout the pregnancy). They did more test, though, and I apparently had "the eggs of a teenager," according to the doctor. Sweet.

I felt like we were clearing every hurdle and that there was just one more ahead. If the baby was a girl, I felt like we'd be home free. Autism risks are much higher in boys; in my mind, I thought that if we had a girl she'd be safer from the struggles her brothers had encountered.

I cried a little when the sonogram tech said "It's a boy!" I didn't cry because I was disappointed--I love little boys and honestly would not know what to do with a little girl--but it was because I was scared for him. I wanted this baby I had yet to meet to be as safe as possible from everything. And here was one thing I had less control to protect him from.

Within half an hour that fear turned to resolve--if baby had autism, we were the perfect family for him to be born into. He'd have autism pros for parents and have so much love. Game on--let's do this.

Finally he was here, a little boy who looked ever so much like his daddy. And, well, I watched for every sign.

I know the developmental milestones; it's like they are tattooed to the surface of my brain because my life has been about trying to get Beh to reach them. And Baby L was reaching them, all on his own.

He made eye contact.

He started smiling a social smile.

He recognized himself in the mirror.

He started waving and saying something sounding like "hi."

He threw a ball.

I was overcome with the miracle of all these things. The years of trying to get Beh to make eye contact. The years of sitting on the bathroom counter, trying to get Beh to see the child in the mirror and recognize him as himself. The eight years of trying to teach him to say "hi" and "goodbye."

With every little milestone I was choked up with tears. I wanted to shout it to the world: "My baby smiled! My baby waved!"

People were like, "Yeah, that's nice," as if it were some normal thing.

You don't get it. HOW COULD YOU THINK THIS WAS A NORMAL THING? THIS IS A MIRACLE!! We're talking Jesus walking on water miracle, here. Everything L does is a MIRACLE.

I'm so thankful that I didn't have a neurotypical child first, that autism is my normal, because there's no way that I would be able to identify the miraculous, be able to treasure it, if I thought miracles were the status quo.

Of course, along with the miracles are challenges. I know that this is going to sound strange, but parenting a neurotypical baby is so much harder than parenting a baby with autism.

I remember having this moment in Beh's nursery, all those years ago, when I thought that God didn't think that much of me. A friend of mine had endured so many challenges--two children with a variety of health concerns requiring surgery, a husband who passed away. Something that came up in conversations we had was this idea that God only gives you what you could handle, and that God must've thought she was an amazing woman of great strength because he entrusted her to carry so much.

I stood there next to Beh's crib, struck by how different my experience was. God gave me the perfect baby. He didn't fuss. When he woke up in the morning, he sat up in his crib entertaining himself, never crying out for a parent. When I put him to bed at night, he never cried for a parent to stay. He was such an easy baby. I must not have been worthy of carrying much because I had no load to carry at all.

Ha.

Another autism mom and I were talking about this the other day. Like me, she had a child with autism before having a neurotypical child. And we both agreed that parenting a neurotypical toddler was so. much. harder.

Beh didn't cry because he didn't have that craving for social interaction. He entertained himself because he didn't really have much need for others. Had I known then what I know now, I would have seen that as a giant red autism flag.

But neurotypical babies . . . wow. Never has caring for a baby been so much work. L wants constant interaction and entertainment. He wants to be an active part of the world, not an observer of it. I'm exhausted, LOL. It's weird and lovely and exciting and beautiful.

The One Where Mom Starts Crying in the Middle of an Eval

Today Beh had the evaluation for his augmentative communication device. It's been a long, long painful wait to get to this point. So many stops and starts, even this week when his original appointment got rescheduled (I gave my appointment to another mom who had been waiting over a year and was going to have to wait yet another month for an appointment because her family was going out of town).

The eval team was a speech therapist and an occupational therapist. And they, wow, they knew their stuff. I don't just mean technology. They knew autism, they knew Beh--even though they'd just met him, they had an uncanny ability to read him and interpret his behaviors.

The speech therapist pulled out the first device to try and said one simple sentence about how Beh could push this button on this screen to communicate. I don't really know what the exact sentence was, but it made me start crying. Right there on my table, in tangible form, was the gateway we'd been searching for for so long. And her one sentence made it sound so simple. Beh just needed to push X and, BOOM, communication. My baby could have a voice, after nine years of searching for it. All of it, in the reach of our grasp, finally. The hope, the relief, the love were too much for my heart to contain and poured out in tears. LOL, it was embarrassing. I choked out an apology, saying that it was just that we'd hoped for this for so long. "Don't apologize," the OT said, "This is what we're here for."

I composed myself, and we got to work. We went through several devices, all of which were tablet-based. The challenge was finding one that didn't lead to too much stimming due to Beh's hyperlexia. We had to actually hide a few buttons because he was stimming so much (he especially liked hitting "the" and the pluralizing "s" button because it threw the software off--it would simply spell out T-H-E-S because it did not know how to pronounce the nonsense word).

We finally found a good fit for Beh's needs. It's the Accent 800 with Word Power software. It's about the size of an iPad mini. It's so cool. It relies on pictures paired with words because the words alone were too much to stim on for Beh. Here it is:



This baby is $5,995 of awesome. He'll be able to take it with him wherever he goes.

It will be awhile still before that happens, though. There's still a lot more waiting. First, the claim will be submitted to our primary insurance, and they have 60 days to deny the claim, approve the claim, or approve a portion of the claim. After that, the claim for any remainder the private insurance doesn't cover will be submitted to Medicaid, and they have 30 days to decide (which shouldn't be a problem since the state already approved the device). So we have up to 90 days of just waiting on the insurance.

If all goes well there, we enter the training phase. It is going to take a lot of time to teach Beh how to use the software to communicate. Everyone on Beh's team--therapists, behavior coaches, teachers, parents--will need to be trained on how to help Beh communicate with it.

But today I'm not thinking about all the work that is before us; today I'm just basking in thankfulness and peace because this leg of the race is over. No more fighting and wrangling to make this happen. All of that ugliness is done. We have hope and a promise for the future. We have an Accent 800 :)