Survival

For some reason, my children have conspired to drive me over the brink of insanity the first night of Robbie's business trips. They are already bad sleepers, most especially Fionn, but they really pull out all the stops on my solo nights. This has the effect of making the rest of the week, or weeks, that he's gone nearly unbearable since I've started out with zero sleep.

Last night was no exception - after going to bed at 1am since I was trying to catch up on a million things, Fionn decided to wake up 4 or 5 times (it's all a blur now). Then, at 5am, he decided that the pewter light edging in around the drapes was as good as daylight, so he demanded to go downstairs for breakfast. What followed was a nightmarish sequence in which I tried to sleep on the couch in between entertaining him, knowing full well that the sleep I was getting wouldn't help at all and not giving a damn anyway.

Finally, I noticed that my dreams were getting longer than one minute, so I cautiously opened an eye and found him splayed out on the rug, fast asleep. Ahhh. I snuggled in and got a blissful half an hour of sleep. At which point a splatter of little footsteps upstairs told me that I was in for round two.

I share all these details not for sympathy (sniff sniff), but just to explain why the post that follows is less of a post and more of me just vomiting random words and pictures onto the screen.

On the good news front, Fionn had his yearly evaluation with the Early Intervention team and they determined that he is right on target for all his milestones. I've been assuming that Fionn would have at least a few delays and need to go through the toddler group and then preschool, just as Emerson did. The reality that this wasn't going to happen and that we would actually have to find a regular preschool for him someday was a little jarring at first. But then it sunk in - everything was OK. It turns out that OK is a great place to be.

On the bad news front, Emerson has decided that being the least bit compliant is no longer a priority. The little boy who would stop walking the moment he got too close to the street is now gleefully ignoring my commands to stop and running headlong toward traffic. The boy who would get frustrated easily, but at least try hard during therapy sessions, is now throwing tantrums as much at home as he is in the speech therapists's office. During a mobility session with his vision teacher a couple of weeks ago, he started losing it, stomping his feet and yelling. She gasped. "Have you ever seen him do this before?"

I laughed. "Uh, yeah, all the time. I guess this means he's comfortable with you now," I joked. We talked about the possibility that he was acting out because I was around - a conversation that I repeated with his speech therapist a couple of days later. I agreed to step out of sessions, but then the vision teacher mentioned that he was acting up during school sessions as well.

Part of me knows it's just a stage and that I should be grateful he's asserting his independence. But the other part of me remembers all the obnoxious boys I've ever had the displeasure of teaching and all the times I thought, "I will never allow my son to behave like this for other people." He's certainly not at that level yet, but my imagination is conjuring up the worst.

What's hard about him is not so much the defiance, which is normal behavior in many ways, but how to effectively deal with it when his personality is already an enigma wrapped in a mystery and topped with a "What the heck?!" His team of teachers and I spend endless hours trying to figure out what motivates him and why he does the things he does. It's validating to see professionals struggle as much as we do, but it also means we only makes spurts of progress, mainly based on sheer luck.

But back to the positive again. During Emerson's preschool progress report a few weeks ago(before the defiant stage, so it was a purely good report), I asked the speech therapist in the classroom about apraxia. She seemed stunned and said, "I've diagnosed a good portion of the class with speech apraxia - but not him." Around the same time, a friend of ours who is a retired speech therapist brought up my post on apraxia. She felt she hadn't seen definite signs of apraxia during her interactions with him and was concerned that our private speech therapist had given him such a "devastating diagnosis" so quickly. Just hearing her validate the diagnosis as devastating when so few people around us grasp the magnitude of it was a huge relief. But hearing another opinion that it may not be apraxia was even better.

After hanging out with her for a while, during which time Emerson went about his normal play chatter, she looked at me and said, "Some people may say apraxia. I say bull sh**."

I'm trying not to get my hopes up too much, especially since the private speech therapist confirms the apraxia diagnosis practically every other session, but I'll take even a sliver of possibility at this point.

Since I'm finally done with school for the semester, I've been slogging through books with titles like "Boys of Few Words," "Positive Discipline," and "Beyond Sibling Rivalry" (another story). Strangely, the most helpful passage has been from the sibling book. It was about children who get an unfair lot in life and how that can sometimes lead to venting their anger on other people, especially siblings who have an easier time.

I looked down at Emerson and thought about that day sometime in the future when he screams at me "Life is so unfair!" And he'll be right. That doesn't mean I won't discipline him. It doesn't mean he won't still have a great life. But it does mean I will need to be more sympathetic.

And patient.

Step Two: Don't Wallow in Self-Pity

A couple of months ago, the boys and I were taking advantage of an unseasonably warm November day by hanging out in our neighborhood park. When we arrived, we found a group of preschoolers collecting the still-abundant leaves into piles and then shrieking as they catapulted into them. I was suddenly overwhelmed by Norman Rockwell-esque warm fuzzies watching them play and thinking about how lucky we are to live in a friendly neighborhood full of kids the same ages as our boys.

However, I was quickly brought back to reality when I realized that Emerson had no intentions of joining the crowd - instead heading toward the empty climbing structure with faithful Fionn following behind. I tried to remind myself that between his shyness, poor vision, and difficulty communicating, socializing was a lot of work for him. But those things would change with time...hopefully.

Later, we walked home with another family who live on our street. They have two boys as well – the dimpled, precocious, 5-year-old Henry and the exuberant, fearless, three-year-old Oliver. As usual, Henry tried fruitlessly to engage Emerson in conversation as he bumped along with Fionn in the wagon. He finally gave up just as we reached our street and refocused his attention on the yellow house we were passing.

“Do you know who lives there?” he asked me.

“Sure, there is Sam, who is close to your age, and Zach, who is close to Oliver’s age, and baby Layla.”

“Sam is my friend, we play a lot. Does Emerson ever play with Zach?”

“No, he hasn’t yet.”

“Why?”

I sighed a little as I thought of a way to explain to a 5-year-old what was already weighing heavily on my mind. My mind shot back to the definitions of Apraxia I had read recently.

“He has a hard time talking to people, so that makes him a little shy. But he will get better,” I finally answered.

His brow furrowed as he thought deeply about this. “Why does he have a hard time talking to people? Is there something wrong with his voice?”

I smiled. Sometimes Henry reminds me of the kind of plucky boys you find in British adventure stories and I just want to hug him for it.

“No, it’s just hard for his brain to form the words right now,” I explained as simply as I could.

By this point we had reached their front yard and stopped. Emerson sensed freedom and began a happy stream of jibber jabber as he climbed out of the wagon.

Henry watched him for a few seconds and then said sagely, “He’s saying that he wants to come play in our backyard with us. Come on Emerson, let’s go.”


If only the world were full of Henrys.

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This past week, I arrived at Emerson’s private speech therapy appointment early for the first time ever. As we crawled through the hospital parking garage looking for an open spot, I called back to him, “When we see Miss Anita, you should say ‘Hellooooo Anita!’”

Emerson giggled, and much to my surprise yelled out, “Hell-ooooo ‘Tita!!”

Instead of hurtling through the hospital halls with one child in a stroller and another bouncing wildly in the sling on my chest, we casually walked toward the waiting room. The entire way there (and it’s a bit of a hike let me tell you), Emerson called out “Hell-ooooo ‘Tita!!” or “Hell-oooo Mama!!” and we all dissolved into giddy laughter.

The appointment was one of the best ever. He went through most of his flashcards with patience and pronounced sounds I’d never heard him say before. When the therapist asked what his progress had been the previous week, I proudly listed his new words and his attempts at sentences.

I was riding a wave of happiness, so I thought I’d take it one step further and ask what her thoughts were on Apraxia. She had mentioned it as a possibility when he first started, but she wanted more time to make a diagnosis. With his exponential progress I felt silly for even asking, but I wanted to finally rule it out.

I knew the moment I saw her familiar sympathetic smile that my bubble was about to be burst.

“Yes, I definitely think he has Apraxia.”

Finding out about albinism was like getting the wind knocked out of me...it took a while to get my breath back and even longer to get my balance. But finding out about Apraxia was like...like...remember that laughably impossible scene in Indiana Jones and the Temple of Doom when the evil villain plunges his fist into a man’s bare chest and rips out his heart? Like that.

Apraxia, the therapist reminded me, means he will need speech therapy until he’s as caught up as he can be – likely around highschool. I knew from my research that Apraxia also means constant struggles with reading and the parts of math and science that involve language (i.e. story problems). And of course, it means difficulty socializing.

The therapist explained that she knew he had Apraxia partly because an average child would learn a new sound and then instantly generalize it to every new word, whereas he has to learn the sounds of each and every word anew. Suddenly, I imagined this vast ocean of language stretched out in front of me - and we were going to have to guide him through it drop by drop.

Perhaps one of the hardest realities that came crashing down was the fact that Apraxia often runs in families. Fionn seems to be on track so far, but it is too early to rule it out. And the possibility of trying for one more baby, well that is definitely out for good.

It’s not that I don’t love my children exactly as they are and wouldn’t want a million more of them (heck, with those numbers, we’d definitely get our own show on TLC). It’s just that I am already crushed with parental guilt over the horrible genetic hand I’ve dealt them. I feel like we’re on the game show “How many conditions can you give your children?!!”

Host: “It’s the final round and our contestants, Robbie and Cassi, have already taken albinism, sensory processing disorder and severe peanut allergies. For the win, what’s your next move?”

Contestants: “Um...um...we’ll take Apraxia for $500 Alex!!”

I went through the rest of the day in a depressed haze. When Robbie came home from work, I tried to choke it back while I listened to his day and we buzzed around the kitchen preparing dinner. But as soon as the opportunity came, the day’s event came pouring out, ending with me bursting into tears as I slammed the fridge door shut.

He pulled me into a hug and tried to refocus me on the positive. Then we went about our normal routine.

Later on that night, Robbie happily announced that an old friend was expecting her second baby. I turned my anger on him, practically spitting venom. “That’s wonderful, I’ll bet the second one will be a girl so she’ll have one of each and they’ll both be perfectly healthy and happy in every way!”

Was I being bitchy and irrational? Yes. Had I completely lost perspective only a month after returning from the NIH? Yes. Is my Pollyanna makeover going well? Obviously not.

Unlike me, my husband is infinitely patient and optimistic, even with these kinds of outbursts. Sometimes I wish he would throw himself to the ground and beat his fists and kick and scream, “You’re right! This sucks!” But I have to accept that he never will.

When the kids were asleep, we curled up on the couch together and I pressed hot, indulgent tears into his chest. The more I worried out loud, the more he reassured me that everything would be fine.

“He’ll adapt, he always does.”

He was right of course – Emerson is already an expert at adapting in order to get what he wants and needs. I knew then – and I’ve reminded myself daily since – that my guilt isn’t going to help him. So I’ll have to figure out how to adapt too. Eventually.