Tuesday, January 19, 2010

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.

*********************************************************

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.

Digg this

7 comments:

Sarah said...

I'll say it for you, Cassie. It sucks. While I haven't had the health issues you have had with the boys, at times I wonder if we'll ever hit even keel around here: One with ADD, sensory processing disorder, and dysgraphia, and another with a bunch of OT, PT and vision therapy under his belt but no formal diagnosis. Yet (neurology is our next stop). Tear flow freely from my eyes some days, and just to hear someone else say that it does, indeed, suck can really help. YOu're doing well.

Christina said...

I'm so glad I found your blog Cassie! I can relate to the guilt. The disorders I have passed on to my children are mental and there are days when I curse myself for inflicting such difficulties on my little girl (Fiona has been diagnosed with major depression with psychotic features and OCD). I see my baby struggling with panic attacks, delusions and fears and feel so helpless. I wonder if one day the depression will be too much for her, will she attempt the suicide that I thought about almost every day of my pre-medicated life?
will the delusions morph into a more serious diagnosis when she's older? What burdens have I placed by my genes on this poor child?

I recently said to a friend, "I feel so bad that my children got stuck with me as a mom, and that I gave them all these issues to deal with." To which she replied something like, "your children are blessed to have a mom who has been where they are, who is sensitive to their issues and who can help them learn how to deal with them." And she's right. So I say to you, your children are blessed too. You are an awesome mom.

nams said...

Cassi,

I know I am nobody to comment or advise you, but honestly I feel sometimes doctors and special eds etc want to give a name to every damn thing that may seem out of the box or not in the normal lines of a child's development path.
I mean, what is normal?
By Definition it means forming with or constituting a norm or standard or level or type or social norm; not abnormal; "serve wine at normal room temperature"; well I and lot of other normal people like me, like our wine Chilled!! just coz it tastes better :)


Moral of the story:

A. do not always believe what you are being told, esp about ur children.
B. Every child is different
eg: I have known a lot of 'normal ' kids who could only speak clearly at age 5 etc. I still do feel it could be vision related.
Emerson, like all of us came into this world with his own fate and destiny. So please do not feel guilty about anything.

My advise, give him some time and believe in him, also from time to time put him in situations where he may be challenged. Even if at first, he may not speak a word or just speak gibberish. (am sure u do already).

One day he will outshine all the other ' Normal' kids in his own special way.
P.S - There is enough evidence and proof to support this . Like Robby said, he will adapt and adapt well in order to do as good or maybe better than the rest!

Last but not the least I just want to say that YOU ARE A GREAT MOM!! These boys r the luckiest kids on the block to have u as their mother.

Nams.

nams said...

Cassi,

I know I am nobody to comment or advise you, but honestly I feel sometimes doctors and special eds etc want to give a name to every damn thing that may seem out of the box or not in the normal lines of a child's development path.
I mean, what is normal?
By Definition it means forming with or constituting a norm or standard or level or type or social norm; not abnormal; "serve wine at normal room temperature"; well I and lot of other normal people like me, like our wine Chilled!! just coz it tastes better :)


Moral of the story:

A. do not always believe what you are being told, esp about ur children.
B. Every child is different
eg: I have known a lot of 'normal ' kids who could only speak clearly at age 5 etc. I still do feel it could be vision related.
Emerson, like all of us came into this world with his own fate and destiny. So please do not feel guilty about anything.

My advise, give him some time and believe in him, also from time to time put him in situations where he may be challenged. Even if at first, he may not speak a word or just speak gibberish. (am sure u do already).

One day he will outshine all the other ' Normal' kids in his own special way.
P.S - There is enough evidence and proof to support this . Like Robby said, he will adapt and adapt well in order to do as good or maybe better than the rest!

Last but not the least I just want to say that YOU ARE A GREAT MOM!! These boys r the luckiest kids on the block to have u as their mother.

Nams.

burgiboogie said...

I agree with Nams he is still a baby and if I had a nickle for everything they told me my son had, or couldn't do, hello vacation house. I too have been guilty of letting it get me down, but in the end, they don't know anything.

I am amazed at the progress Emerson is making! all those new words in what seems like a very short time. My son wasn't able to even say "daddy" until he was 5.5!! Don't ever get caught up in the "how" just keep focusing on the end.

Melissa said...

just so you know Cassi, you continue to inspire me with your honesty, realness and strength. i agree with everyone else that you are a wonderful, sensitive mom...and just to repeat, honest, real & strong. i wish we lived closer (and maybe soon). hugging on you from afar :)

Brandon said...

Sounds like you guys have been through a lot since we saw each other last, Cassi. It's a tough hand you've been dealt, but those boys are sure blessed to have you in their lives. Hope we get to see everyone again soon.