Friday, July 29, 2011

My Incredible Shrinking Child

This is fun, but you don't expect me to eat any of this, do you?

A couple of months ago I wrote a blog about Jack's food issues. At that time he'd just been to the doctor's and measured 5'2" and 91 pounds. Last week he went to the doctor's again (monthly visit). This time he measured 5"3" and 90 pounds (with all his clothes on). This morning on our scale at home he weighed 86 pounds!

The problem is he'd rather design and play video games than eat. He gets so fixated on what he's working on, that he's not interested in food. In addition, he has a very narrow range of foods he'll eat. Sometimes I'll fix something I know is a favorite and he'll eat a couple of bites, then tell me, "It tastes funny." Or make an attempt at a few bites and then say, "I'm full."

People who have children who eat normally--who come and tell them they need a snack when they're hungry--will judge me for this. I can't tell you how many times I've been told, "Just make him eat! Make him sit there till he cleans his plate." That just seems so cruel to me. If he's really not hungry, how can it be a good thing to force him to eat? Won't that just make the problem worse?

I've been at other people's houses and heard their children call, "Mom! I'm hungry!" This is a cry rarely heard in our house. Even when he was a toddler, I would have to remember to feed him now and then. While my friends' children would go to the refrigerator and indicate they wanted something to eat, my son never did that. He's just never been that interested in food.

This is such a foreign concept to me! I've always loved food and have battled my weight most of my life. My problem is I that love and am willing to try just about everything, while Jack is extremely suspicious of anything new or different. Even things I think he'll love if he'd just try them. I can't tell you how many times I've struggled just to get him to taste something new. Forget the "no thank you bite." Not gonna happen.

Once on a vacation trip when he was 7 1/2, my friend tried to bribe him by offering to buy him a DS (which he wanted more than anything else in the world at that time) if he'd only taste what she was offering. Still wouldn't do it. "But will you still buy me a DS?" he asked. When she explained to him that that wasn't the deal, he cried (and she felt really bad about it!) but she was right. That wasn't the deal.

I've really been trying to push the snacks and the extra glasses of (soy) milk the past few days. I even gave him a root beer float last night for dessert, a particular favorite. I'd even be tempted to try Pediasure, if I thought he'd actually drink it, but I don't see that happening.

In this age of so much childhood obesity, I find it kind of ironic that we have the opposite problem in our house. I know I'm not alone in this. Anybody else have a child with super-sensitive tastebuds who's a challenge to feed? Any suggestions for getting some extra calories into him? 

Tuesday, July 19, 2011

Diagnosis: It's Just the Beginning

Third grade was a really tough year for us. I'd been begging Jack's teachers and pediatrician for answers ever since kindergarten. Nobody seemed to see any cause for concern. Except for the fact that he was always in trouble. Except for the repeated trips to the principal's office and the damn Behavior Slips. He's always been such a sweet, loving little boy. Well, except for the giant meltdowns.

One day we came straight from a conference at school (both parents, two teachers and the principal--serious stuff) to a play date at the park. I was in tears because I had just been told that one of the other parents had decreed that they no longer wanted their child to be allowed to play with mine. And of course, the teachers couldn't tell me who it was, because they "aren't allowed to discuss other parents or children." Confidentiality and all that (but the other parents were sure as heck allowed to talk about me and my family, huh?). As I was describing Jack's behaviors to another mom, she gently suggested that I should, "Go home and Google 'Sensory Processing Disorder.'" I did, and it was as if someone had suddenly turned on the light in a dark room. I ticked off symptom after symptom that matched my son's behaviors. Now I had a new question: why did it take another parent (bless her soul, she'll always have a special place in my heart!) to diagnose my son, when I'd been asking his teachers and doctors about it for years?

The final straw came at the end of that school year. My husband Charlie, who'd instructed the school to call him first the next time Jack was sent to the office, called me around lunchtime and said, "You need to go pick Jack up from school. He's been suspended." Turns out he'd lost his temper with another child and tried to choke him. He was suspended from school for the last day and a half of the school year, and we weren't even sure if he'd be allowed back.

Though Charlie and I were devastated that he was suspended, Jack considered it an early start to his summer vacation. School was not a happy place for him. He cried and said, "I hate school!" every morning on the way there. It was a constant battle to try to get him to have a positive attitude and look forward to the fun things about school: his friends, art and music, recess.

Immediately following that suspension (who gets suspended from the third grade anyway?!), I made an appointment with Jack's pediatrician and showed him the list of SPD symptoms that Jack was exhibiting. Finally he did some more blood work (all negative) and referred us to a family psychiatrist. I made an appointment with a doctor a friend had used with her son, and we came out of that first appointment with a diagnosis of Sensory Processing Disorder and Pervasive Developmental Disorder--Non-Specific (later ADHD also). He gave us a prescription for impulse control, recommended some books for me to read and off we went.

My husband and I started a voracious reading campaign (see Recommended Reading list on this page) to educate ourselves as much as possible to help our boy. Even then, it was several months before I even realized that Jack had Autism. Nobody ever said the "A" word to me and it was a long time before I found out that PDD-NOS is on the Autism Spectrum. But the more I read, the more everything made sense. Knowledge is power!

The best thing about finally having a diagnosis is that now we know he's not a behavioral problem. He has a developmental disorder that causes him to respond (and overreact) to things in a certain way. If he's overwhelmed or frustrated, if everything gets too chaotic for him, he can respond in one of three ways: 1) he can get angry, 2) he can cry, or 3) he can retreat. Now we know a little more and can try to avoid situations that will demand too much of him or provoke an unwanted response. We have a legal right to special consideration, since he has a disability.

We're still learning, but now we have some tools to help us along the way. We have regular meetings with Jack's teachers, his principal and the school psychologist to help formulate plans for his success. We meet once a month with his doctor (a gentle, soft-spoken man we all adore). He has a team of people smoothing his way, including his Mom and Dad who are his biggest advocates. Next month he'll enter the sixth grade! We have high hopes for his final year of elementary school, as well the rest of his life. Diagnosis was only the beginning.

One final postscript: the boy who got choked, prompting Jack's suspension? He became one of Jack's best buddies in fourth grade!

Saturday, July 16, 2011

Parenting Advice from Total Strangers

Saw this a few week's back on Laura Shumaker's blog and asked her if I could borrow it. Anyone who has a child on the Spectrum has heard all of this before. Very funny, in a slightly ouchy sort of way. Enjoy!

Saturday, July 9, 2011

Social Skills & the Autism Spectrum

We were riding in the car the other night, talking about the Harry Potter movie coming out next week. We've been reading the books together, and we're into the fifth book now. We've watched the first four movies, so I was asking him if he wanted to go ahead and watch the other movies so we can go see the new one, or if he wants to finish reading the books first. He decided he would rather finish the books first (which will take a while--they're big, thick books!), and then watch the movies. A little disappointed that we wouldn't see "Deathly Hallows Part 2" together, I asked him if he'd mind if I saw it with my friend, without him. He thought for a moment and then said, "No, you can go. Even though you haven't seen all the movies, you've read the books so you should be able to figure out the story. You might have trouble knowing who the characters are, though, since you haven't seen all the movies."

Wow! Pretty impressive logic coming from my 10 year old. "You're a pretty smart boy!" I told him proudly.

He looked a little stunned for a moment, then responded, "Thanks! I know not to take insults to heart." Ouch. We were on our way to a social event, after all, and he's had his share of hurtful remarks, both intended and unintended. There was that familiar ache in my heart again. How can everyone not love my sweet boy the way I do?

"You know," I went on (always a mom who sees a teaching/reinforcement opportunity), "sometimes people say insults cause they're only playing with you. Like when people trash-talk when you're playing a game. It's not always meant to be hurtful. Sometimes people say little 'insults' cause they like you. They're just being silly and playful."

It's hard for him to know the difference between someone really being mean and just joking around. He used to come in the house in tears several times a day, because some kid in the neighborhood said something mean to him or he just didn't understand the social nuances. For the past year he's just stayed in the house, rather than deal with the meanness. The other kids see him as an easy target, and think it's funny when he cries or gets angry when they tease him. We make playdates with his school friends, he enjoys activities with the junior high group at church and we have one special little girl who lives a couple of blocks away who plays very nicely with him (we love her!).

I worry about his social skills when he grows up and has to go out into the world without me. Will he be that "weird guy" at work, the really smart computer geek with no clue how to carry on a conversation? Will he have a girlfriend? (At this point, girls are still yucky--at least in "that" way.) He's convinced that he and a couple of his buddies will have their own video game company. He's "not going to work for anybody else." Okay. We'll see how that goes.

Later that same evening, as I was bringing him back from his swim party, we saw a group of the kids from our street standing in a bunch on the corner. Kids out playing on a summer night. Except my kid is always the outsider. He waved at a couple of them as we drove past in the car. "Did they wave back?" I asked him.

"No," he sighed, "but at least they didn't run away."

Wednesday, July 6, 2011

5 Ways to Make Your Mother Crazy: Cheap Entertainment

My son Jack is 10 1/2, not quite a teenager yet, but definitely showing the signs. Not so long ago I was the love of his life. He was always telling me how beautiful I am, kissing me and holding my hand everywhere we went. These days not so much. His quest in life these days seems to be seeing how many ways he can drive me crazy. Here are some of his favorite activities:
  1. Making annoying or repetitive noises in the car - As if vocalizing alone is not enough, now he has this handheld gaming system called a 3DS, which is not only capable of recording his annoying sounds but is also able to distort the annoying sounds and replay them ad infinitum. Slowed down to Barry White range or speeded up to Chipmunk level and played over and over, the simplest phrases can become so irritating, I'm soon begging him to stop. Now that he's big enough to ride in the front seat, it's so much more fun to make annoying sounds from close range!
  2. Trying to make me fall over in public - If we're standing, singing in church or just talking to someone in the lobby, he likes to lean against me until I lose my balance. Sometimes this can be thwarted by my stepping lithely to the side and causing him to lose his balance. Apparently being the instrument of your mother's fall and resulting broken hip is hilarious entertainment. The Lean can also be accomplished while sitting side by side reading together. He wiggles closer and closer, until my shoulder is nearly breaking under the increasing pressure of his head. Good times!
  3. Repeating words over and over - Not so long ago, I would say, "Goodnight, sweetheart. Mommy loves you!" and he would say, "Goodnight. I love you, too." Now it's, "Goodnight . . . goodnight . . . goodnight . . . goodnight . . ." Sometimes he whispers so I can barely hear him, which is even more annoying.
  4. "What about the dogs?" - Whenever I ask him a question or try to broach an uncomfortable subject, this is his "go to" phrase for seamlessly changing the subject. "Did you brush your teeth?" "What about the dogs?" "Do you have homework today?" "What about the dogs?" "Anything interesting happen at school today?" "What about the dogs?" For a long time I thought this phrase was the Autism equivalent of, "Oh look! Haley's Comet!" But now that he realizes how crazy it makes me, he does it more and more on purpose.
  5. The human tape recorder - We've all done this to our parents and our siblings. We all know how crazy it makes people to repeat every single word out of their mouths right back at them. It's just so much fun to watch steam come out of the other person's ears as you repeat everything they say, "Stop that! Quit mimicking me! I mean it! Knock it off!" The best way I've found of turning this around is to say things like, "I have the best Mommy in the whole world! I love her so much I'm going to sell all my video games and take her on a nice vacation! I'm just so lucky to live here!" The more outrageous things I can think of to make him say, the more he'll start laughing so much he can no longer play his annoying game.
These are just some of the tools in his box of tricks, but everyday he finds some new way to drive me closer to the edge. Whatever he's doing, I'll stop and say, "You're just trying to annoy me, aren't you?" He's getting really good at wiggling his eyebrows while giving me a big grin. So glad I'm such a source of cheap entertainment. I guess it's only fair, since we used to spend hours just staring at him in adoration when he was a baby. Why mommies go gray!