Growing Up Aspie

We had a Passover Seder at my parents' house last night, and my cousin and his wife came in from the other side of the state. My cousin is 46 years old and has Aspergers. He is so much like my nine year old in so many ways, and I feel really blessed to have him in our family - not just because he's one of the smartest, kindest people I know, but to have someone else with Aspergers in the family is really helpful. He's able to help us understand our son better, and - although our oldest son has no idea he has AS - he absolutely idolizes my cousin. Probably because he's the only person in the world who knows more about snakes than our little guy!

Anyway, my cousin made this statement last night that I have to immortalize here. He was telling us what it was like for him, growing up an Aspie in an affluent suburb of NYC.

"It was tough," he said. "Other kids were into sports and Star Wars.  I was into car washes."

See why I love him so much?

Autism, Hope, and Jenny McCarthy

Thanks to some extra Audible.com credits, I downloaded Jenny McCarthy's books "Louder than Words: A Mother's Journey in Healing Autism" and "Mother Warriors: A Nation of Parents Healing Autism Against All Odds."

I can tell you that my expectations for these books were not high. I had seen Jenny's article in defense of Dr. Andrew Wakefield, maintaining that there is a link between vaccines and autism. I had heard her incredible claims that kids were recovering from autism. And...she was Jenny McCarthy, a B-list celebrity and former Playmate. Why would I have anything BUT low expectations?

But, my curiosity got the better of me, and I used those bonus credits on Jenny McCarthy instead of Ayn Rand. (Seriously, that WAS my consideration set!)

And I have no regrets.

First, I'll say this: Jenny McCarthy is an awesome story teller. Don't let the blond hair and ginormous boobs fool you - this woman can write. She is passionate, funny, and surprisingly articulate. She had me hooked from the first minutes of  "Louder than Words." (Credit must go to narrator Tavia Gilbert, as well - she's fab.)

The story of Jenny's struggle to recover her son Evan from autism is tragic, but inspiring. It had me counting my blessings - I'm so fortunate that our boys never suffered from seizures as Evan did. We never had to hospitalize them for anything relating to their autism. Apart from their asthma and Ig's chronic ear infections, our kids have been in good health. She had to watch her baby go into cardiac arrest before her eyes. I can't even fathom what that was like.

Question all you like Jenny's decision to pursue alternative biomedical treatments. She offers disclaimers left, right and center, and credits ABA, speech therapy and OT for Evan's improvements as much as anything else.   It also has to be clarified that she is not anti-vaccine, although this has been broadly publicized. She questions the vaccine schedule. She questions the cookie-cutter approach we take to delivering all vaccines to all children on this accepted schedule. And she questions the use of thimerosal in vaccines. I'm not anti-vaccine, but I have to admit, I've questioned all these things too. Why are Gardasil and Chicken Pox vaccines mandatory in some states? How did the flu vaccine, which is predictive and has a history of quality control issues, become mandatory for preschoolers? And if thimerosal isn't problematic, why are there thimerosal-free vaccines (and why the hell aren't they covered by insurance?)

What I love about Jenny McCarthy is that she delivers hope. Sure, GFCF diets and B12 shots won't work for all kids with autism...but they might work for some. What's the harm in trying alternative treatments that are safe, non-invasive and inexpensive? Especially if you can get you pediatrician on board to help you monitor. Why not try to gain some control over something that's taken over your life and your child's, if it can only help?

Jenny McCarthy made me realize that I had accepted Ig's autism as inevitable. This is how he is. This is how he will be. We'll do ABA and speech, and OT if we can afford it. We'll try to get him into an appropriate school. Hopefully, this will help him improve. Then we won't have to worry about him running into the street or disappearing at recess if he's mainstreamed at school.

When I pictured Iain in the future, I saw someone  who probably wouldn't be able function independently in the world. Ever.

I'd accepted. And in acceptance, I'd become complacent.

Jenny made me realize I don't have to accept. I can do more. I can change the outcome. I have power. I can help my little boy become typical - better than typical. I can help him put that bright little mind to use in a way that will help him achieve the greatness I know he can!

I don't know that we'll get into hyperbaric chambers and chelation.... but we're starting a GFCF diet soon, for Ig, his oldest brother and me, if not for our whole family. And I'm researching supplements, too. Baby steps...and we'll see how it goes, documenting every step we take.

So... you may think she's a quack, you may think she's a ditz, you may think she's the devil, but I owe a lot to Jenny McCarthy. She gave me hope I didn't even know I needed.

Ig's not feeling well

Ig: (Big sigh) "Mom...I'm not feeling well."

Mom: "You're not feeling well?"
Ig: "No."
Mom: "I'm so sorry, Sweetie! What hurts?"
Ig: "My feelings hurt. My feelings hurt, so I'm not feeling well."

Chicken Pot Pie

What's dinner like at your house?

We're a family with two working parents. My husband and I both work in New York City, which, while it's less than 20 miles east, makes for a 90 minute commute in either direction. By the time we get home, the best we can do is pull something from Trader Joe's out of the freezer, throw it into a skillet, serve it, and leave the pan in the sink until the next morning.

For us, eating together is a priority. It's not just all those stats about how your raise smarter kids with better attitudes towards food when you eat as a family. It's that dinner time is the only time we have together every day when everyone is sitting - and the TV is off. It's that short break between throwing the food together and the blur of homework/baths/bedtime. It's when I should hear about everyone's day, see everyone's faces. It's time to be a family.

But it never quite works out that way.

Tuesday, I worked from home. There was no school. I had seen a recipe for chicken pot pie in some magazine, and although I'm a longtime vegetarian now, I remembered how much I loved it as a kid. So I figured I'd make it for my family. I had ordered groceries online (FreshDirect delivers to our neighborhood now. Woot!) so I included chicken legs and crescent roll dough in the order. I put the chicken and other ingredients in the slow cooker in the morning. I rolled out dough for the crust. I actually PLANNED a meal. I can't remember the last time I PLANNED a meal!!

So we sat down to dinner.

• I don't think Oz (typically developing middle child, age 6) took one bite - if that - before rejecting the meal.
• Ig. (age 4, PDD-NOS) looked at plate, shoved across the table, screamed "NO!" and demanded pasta.
• B, (9, Aspergers) must have seen the look on my face, compensated for everyone else's rudeness, and declared this his favorite meal ever. He ate his and everyone else's.

Did I think this was going to be different from any other meal? When I make fish sticks (which take 5 minutes) I'll get this reaction if they're the wrong shape!

All we want is this peaceful 20 minutes with our family every night, but it rarely happens. Usually it's Ig's doing - he either doesn't like the entree, doesn't like where he's sitting, or has some inappropriate toy with him at the table. This will always result in Ig screaming, throwing something, hitting someone, or whipping something with his blanket. On the worst nights, my husband will lose it and scream at him, and will put Ig in time out. Ig does not like time out, and will usually scream or kick the chair for the full 4 minutes.

While Ig is the predictable and typical disrupter of meals, Oz often contributes by reacting and screaming at his brother. And Bryn will act as the third parent, saying things like "Oz, that's inappropriate!" And we ultimately descend into chaos.

The best nights are the ones when I give in and order pizza or make macaroni and cheese.Then, there are no fits or screams from Ig, unless I put his juice in the wrong cup or something.

But I don't want to give in every night. I want my kids to eat multi-colored foods. I want them to eat protein (although I'd be happy if they chose to go veg with their mama!), along with whole grains and bright-colored vegetables. This is what I try to serve them every night. And I want them to sit, enjoy their healthy meal, and tell me how school was.

Is it so much to ask? 20 peaceful minutes and a healthy meal?

Pants

It's October, officially autumn. Leaves are turning orange, the sky is a bright cobalt blue, and the air has a slight chill to it. We're all happily pulling on our jeans and sweaters and hading out to pick apples and pumpkins.

All, that is, except for Ig.

Ig will not wear pants, at least not voluntarily. Ig, for the last three weeks, has been fighting me tooth and nail every single morning because he wants to wear shorts. He doesn't like long pants. Left to dress himself, he will appear in the living room wearing pull-on shorts, a t-shirt and sandals, despite the fact that the outside temperature is 55 degrees.

Every day, it's a battle. We'll pick out clothes the night before, and I'll often compromise and let him pick out a short-sleeved shirt to wear with the super-soft track pants I bought him. But when the morning comes, the fight ensues. 

I took the proactive measure of hiding all his shorts, which you'd THINK would have been effective. But no. The morning after I did this, Ig dressed himself in short pajama bottoms with a favorite t-shirt. Then he dug a pair of shorts out of a Goodwill bag.

For a few days, the morning battles were reduced in intensity because we agreed that Iain could wear the pajama shorts when he got home from daycare. Fair enough.  Unfortunately, after about 5 days of wearing them (he will pull them out of the hamper), they absolutely needed to be washed! And as a working mother with three boys, I am, admittedly, not always on top of the laundry. The shorts are still waiting to be washed. Ig is not pleased. 

Yesterday, I attempted to reward/bribe my son for putting on a pair of jeans. I told him if he put them on, he could have a lollipop. (Yes, it was 7:00 AM, but a mom's gotta do what a mom's gotta do!)  First, he held the jeans up to his waist, in front of him, and asked for the lolli. Nice try.  Then,he actually did put them on, but said "he wasn't ready" to go to school, because he didn't want to wear long pants. For about the thousandth time this month, I tried to explain that:

• We need to wear LONG pants when it's cold. 
• Look, Mommy's wearing long pants!
• Let's look at "The Snowy Day" (again). See the snow? It's cold, right? Is Peter wearing shorts? No! Peter's wearing (say it with me!) LONG PANTS!

...But to no avail. 

There was endless crying. And Ig's cry, in situations like this, is almost identical to an infants cry - but with the power and volume of a four-year-old.

I offered him his lolly for keeping the pants on. "I don't want a lollipop! I want a push-up pop!" "But honey, we don't have any push-up pops. And I offered you a lollipop." "NO!!!"

Okay, so we left without the lollipop. Not that leaving was so easy. There was still resistance, screaming, continued crying. I cut my losses and let him wear crocs (forbidden in both daycare and preschool) and threw his sneakers and a hoodie into his backpack. Totally not worth the fight, when those could easily be addressed by the daycare staff.

Once we were about a block away from the house, Ig realized that he hadn't gotten his lollipop. Nevermind that he hadn't *wanted* it. The crying, at this point, turned to SCREAMING. Nearly ten minutes in the car (because, natch, we hit every possible red light), with a screaming child in the back seat. Nightmare. A friend pointed out that if a police car had pulled up beside me, it's very likely that I would have lost custody of my child. It sounded that bad.

He was still nearly hysterical when I brought him into daycare. Fortunately, for once, they caught on and pried him off me. Good thing, too - I had barely 10 minutes to catch my bus to work! I kissed him goodbye, knowing he'd be fine in a few minutes.

Anyhow....fortunately, our ABA therapist came last night. Needless to say, we asked her to spend a little time talking about this with him!

No. They go like THIS.

If you have a child with autism, you'll probably smile at this one. Because you live it, too.

As an explanation: I bought new toothbrushes for the boys last weekend. They're the GUM Crayola kind, and they have suction cups at the base, so they can stand unsupported on the counter, bristle-side-up.

This is how I choose to store them.

This is how Ig chooses to store them:

...and if I try to put them back, he lines them up and says, "No, Mom. They go like THIS."

Oh, I love that kid!

Ig's Rules

Ig is my four year old son. He has autism, and is considered "high-functioning." He's verbal, but has a hard time with semantic and pragmatic language, making social conversation next to impossible. He's sweet and loving and smart and wonderful, but his autism can make him seem demanding and difficult.

To give an example of what life is like with Ig, here are a few of his "rules." (To defy them results in a blow-out tantrum.)

1. Ig must ascend the stairs before Mom. Mom may not put even one foot upon the staircase until Ig has reached the top and provides verbal permission.
2. Ig must always open the car door in the morning when leaving for school. Brothers Oz and B may not even touch the handle of the door. Anyone who attempts to touch the door before Ig does will be beaten.
3. Ig must have first choice of all television programming. When Ig is watching his selection, it may not be turned off, nor may the channel be changed, until all credits have rolled and the last notes of the theme song have faded.
4. Ig must eat breakfast sitting next to Mom.
5. Mom may not shower unless given express permission by Ig. Showers granted to Mom may not last more than 6 minutes.
6. Dinner must consist of pasta and cheese. Nothing green, except perhaps the "leaves" of a broccoli "tree" may appear on the plate.
7. Should the refrigerator door be left slightly ajar and produce a beeping sound, no one but Ig may close said door.
8. Ig reserves the right to wear shorts and t-shirts 365 days per year, regardless of weather conditions.
9. Cheese sticks must be provided immediately upon request.
10. Socks will be worn at all times, excluding only bath time.
11. No singing allowed, unless Ig has given express permission.
12. No laughing allowed, unless Ig has given express permission.

Of course, we don't obey all Ig's rules - although life would probably be easier if we did. The brothers have decided on their own to comply with rules 2 and (to some extent) 3. We NEVER turn off Ig's shows before the credits are over. Just not worth it! Rule 6 is routinely ignored, but 10 is respected.

If you have an autistic child, you understand this. You pick and choose which of your child's rigid routines to leave in place, pick your battles. You look for the patterns or rules you've unwittingly broken without prior knowledge of their existence.  

It's an interesting life we lead.  As parents, it's our job to make the world as comfortable as possible for our little tyrants, who build these routines to make some sense of the crazy world around them - while maintaining sanity for ourselves and the rest of our families.

Piece of cake, right?