Wednesday, June 4, 2014

What exactly is the recommended course of autism treatment?

“Peanut butter and jewwy!” my daughter bellowed from the dinner table.

“Do you think she’ll ever get tired of peanut butter and jelly?” my son asked.

“No way,” my fiancé, Jim, replied. “I bet she could eat peanut butter and jelly until the sun explodes. Couldn’t you Charlotte?”

Peanut butter… AND JEWWY!!”

“That would not be very good,” my son noted. “The sun provides the earth with its warmth and energy.”

Easy does it, Captain Literal.

“Well, that was a good dinner. Now I need to get back to work,” Jim announced, smacking his hands across his knees.

Suddenly, my daughter left the table, walked over to a nearby lamp in our family room and smacked the metal base of it with the palm of one hand. It produced a sound near identical to the one Jim had just made when he’d slapped his knees. We all stared in curious silence. “Well, I’m glad we got that settled,” I smiled.

What were the earliest signs of Autism in your children?

As an infant, my son was labeled as “colic” – back when the term still existed. Every afternoon, he would cry for hours. Feeding was also a daunting task, as he had a sensitive gag reflex and refused to touch many foods with his hands. As he continued to grow, he began exhibiting sensitivities to certain sights, sounds and textures, often tantrumming violently when confronted by them. He also engaged in repetitive behaviors; like rocking and humming, shaking his head from side to side and flapping his hands. However, his eye contact was pretty good and he was always smiling. A very lovable child who was smart as whip! “Scary smart” as one person labeled it. At twenty months of age, he’d taught himself how to read all of the letters of the alphabet and the numbers up to twenty. This one-year-old would actually sit in the grocery cart and read the sku numbers off the shelves as we rolled past them. It was amazing!

“It is four times more likely to affect a boy versus a girl,” the psychologist noted when she delivered his diagnosis.

I looked down at my infant daughter in my arms and thought, Thank God you’re a girl!

As an infant, my daughter was just as brilliant as my son, but remarkably different at the same time. She was a much easier-going baby! At first, we assumed she was developing normally, as it sure seemed to be so. By nine months of age, she dug her hands into table food and fed herself without a problem. By twelve months of age, she started using a spoon. She said words like “Mama” and “milk” and “bye bye” until… Shortly after her first birthday, the bye-bye went away, and I noticed she wasn’t saying “Mama” or “milk” anymore either. In fact, she wasn’t saying a whole lot of anything. She also didn’t walk until 16 months of age, and when she did, she had this strange little habit of pacing back and forth on her tiptoes. Sometimes, she’d stand in the middle of the room and spin around and around until she fell against the furniture. She’d simply rub her injury, get up and spin some more.

Later, she refused to use a spoon and, eventually, I noticed she wasn’t responding to her name. It was as if she had suddenly gone deaf. More and more, she withdrew until finally, by nineteen months of age, she was branded with the same diagnosis as my son.

(To learn more about the early behavior characteristics of autism, please visit this website:http://www.child-behavior-guide.com/)

My two-year-old son spins around and walks on his tip-toes all the time, too. Do you think I should be concerned?

I get this kind of question all the time. These behaviors, in and of themselves, do not necessarily indicate a problem. Keep in mind, every young child does odd things here and there as their brains continue to develop. It only becomes a red flag when A) It impedes their developmental progress (or causes it to regress), or B) it impedes on their ability to play appropriately, communicate, perform academically or socialize. However, if there is ever any worry over what your children are doing, you should always take the conservative approach and ask your pediatrician. If your worries are substantiated, ask if they’ll refer your 0-3 year-old to be evaluated by your county’s early intervention program. They’ll give you a definitive answer without hitting your wallet too hard. To get the information you need for your area, click here.

What if my child is 3 years of age or older?

True, most government-funded early intervention programs only address concerns regarding children ages 0-3. After that, you will need to consult the website of your county public school system. Most counties offer special education services for preschool-aged children on the spectrum. I’ll talk more at length about this in my future writings.

I can’t imagine what it must be like getting handed an autism diagnosis for both of your children. How did you handle all of that emotionally?

When my son was diagnosed, I was in a fog. I was so clueless about autism, and as I said before, he reminded me so much of what I was like as a child (and still does). I think that helped me cope through his diagnosis and challenges. I felt like I could relate to him very well, and thus, had a keen sense of what his needs were.

When my daughter was diagnosed, the bottom fell out. We were now facing autism again only from a much different angle. I say this because I felt a lot more fear for my daughter. You see, my son never regressed like she did and I worried about her more-pronounced social withdrawal. It was much more difficult to connect with her. That scared me. No doubt, the onset and diversity of symptoms, as well as the steps towards improvement, can vary widely in all ASD children, as best demonstrated by my own two children.

At his four-year well-check, my son’s pediatrician said… “I’m just amazed. If I was seeing this child for the very first time today, I would have never guessed he ever received an ASD diagnosis.” Meanwhile, at my daughter’s four-year well-check, she wasn’t yet communicating and barely cognizant of her environment. Rather than the steady improvement we continue to observe with my son, it seems my daughter often takes two steps forward and one step back. I really wish I knew why, and the mystery surrounding this has been the toughest thing for me to cope with emotionally. I’ve had to continually remind myself to just let that mystery go and stop measuring her progress against that of my son’s. She’s a different child than he is – gender, personality… everything! I can’t keep attempting to apply the same therapies that worked well for him and expect the same results for her. Most importantly of all, I can’t ever lose hope, simply because my daughter’s progress looks different. She has worked just as hard as her brother, shown remarkable improvement in her own beautiful manner. I’m so very proud of them both and very blessed to be their mother.

One of my favorite movies of all time is an 80’s film called “Parenthood”, which released before anyone ever heard the words ‘Autism Spectrum Disorder’. In one scene, Mary Steenburgen listened to her insufferable brother-in-law (Rick Moranis) as he gloated about his brilliant daughter. Suddenly, her youngest son came galloping into the kitchen, donning a bucket over his head, and proceeded to bang it against the kitchen cabinets. “He likes butting things with his head,” she noted sheepishly. Meanwhile, Steve Martin was frowning over his oldest son, Kevin, an extremely sensitive seven-year-old who stresses over most everything. “Why is he like this?!” Martin griped, as he stressfully pulled at his own shirt collar.

As I sit atop my island of unfolded laundry, eating a PB&J (just in case the sun ever explodes), I can’t help but smile. Sure, our kids will do some pretty kooky stuff – some of it will likely worry us to death! If we take just a moment and look at them closely, we’ll know everything is going to be okay, because if we look at them closely, we can see a reflection of ourselves in their eyes.

No comments:

Post a Comment