What I Really Do.

bloggers

I’ve seen this meme all over the internets lately, as I’m sure many of you have. They almost always crack me up. The blogger one is SPOT ON.

I really like this one even better, though. KIDS WITH AUTISM: WHAT I *REALLY* DO!

(I could insert any number of images for “what I really do” – I can tell you without hesitation that kids with autism climb trees, play Mario, watch Spongebob, listen to iPods, ride bikes at breakneck speed, snuggle puppies, etc.)

Nighty night, big twins. 3/366

I’m trying (trying!) to get the kids back into a regular bedtime routine, even though they don’t go back to school until the 24th. Now that daddy’s back to work and Kayley’s back to school, we can’t be staying up late. Here are my big kids, winding down at bedtime with a little TV.

Nighty Night, Big Twins

Do you see Cali, our chiweenie, on Pablo’s bed? Take note of her stylish diaper. Dang puppy went into heat a few days ago! I was hoping we’d get her spayed before that happened, but I obviously wasn’t on the ball. I should have done it between Thanksgiving and Christmas.

And it’s interesting to me that Cali chooses to stay with Pablo. Although he’s loud and physical and not very gentle, she must sense that he is different from the other kids, because he is the only one she will really tolerate. With the other kids, Cali always has her guard up, because they’re constantly up her ass, wanting to cuddle her and carry her everywhere. But she never runs from Pablo. She snuggles right beside him and sort of guards him while he sleeps. I never dreamed Pablo would be the one she would pick as a favorite, but I think it’s so sweet!

Autism Science Foundation – Our Video Experience!

I wrote a guest post for Mile High Mamas where I talked about filming the year-end fundraising campaign video for the Autism Science Foundation. Go read! Mile High Mamas – Triggering an Avalanche of Autism Research.

If you haven’t yet seen the video, it’s right here!

Seminar for Denver Autism Parents

Autism Puzzle

I just learned about an upcoming free seminar that I’m very interested in attending, and I wanted to pass it along to anyone else who could benefit from it. Trumpet Behavioral Health is hosting a seminar about the Colorado Health Insurance Mandated Autism Treatment (HIMAT) Law. I don’t know much about it, and it seems like most of the parents of kids with autism that I talk to don’t know a whole lot about it either. I’m excited to learn more.

WHAT:
In this free seminar, parents will get help understanding how to secure insurance coverage in Colorado for behavior, speech and occupational therapy for a child with autism. This seminar will provide important information about the new Colorado Health Insurance Mandated Autism Treatment (HIMAT) Law.

During the event, Trumpet Behavioral Health will provide FREE childcare and fun activities for children with autism and their siblings provided by experienced behavior therapists.

Topics will include:

Overview of HIMAT Law for Colorado autism treatment.
What autism treatment services are covered under Colorado’s insurance mandate.
Who it applies to.
How to find out if your child is eligible.
How to maximize your insurance benefits for your child’s autism treatment.
How to talk to your employer and your insurance provider about your rights to coverage.
Under HIMAT, insurance coverage for a child’s Colorado autism treatment now allows for up to $34,000 per year of behavioral therapies. Parents can learn how to maximize their benefits, meet other parents, enjoy light refreshments and get answers while our expert staff provides childcare and fun activities for your kids.

WHEN:
Tuesday, December 13, 2011
6:30 p.m.: Childcare opens and kids activities
7-8 p.m.: Parent seminar

WHERE:
7860 E. Berry Place, Suite #140, Greenwood Village, CO 80111.

FREE:
Invite friends from Denver autism support groups.

REGISTER:
By Phone (720) 470-0578, or online at www.tbh.com/1395-2/. Space is limited; please register early. The first 50 individuals to register will be entered into a special drawing for fun and helpful prizes.

FEATURED SPEAKERS:
Dr. Keelee Burtch, regional director of Trumpet Behavioral Health. Keelee has 12 years of experience working with children with autism and their families. Over the past three years, Keelee has learned to navigate the insurance waters to help children with autism get coverage for the behavior, speech and occupational therapy services they need. Keelee has been successful with almost every insurance company in getting services approved.

Trumpet Behavioral Health’s insurance team will be on hand to answer individual questions regarding benefits, eligibility and authorizations.

Additional Information:
Please contact nwilhelm@tbh.com.

ABOUT TRUMPET BEHAVIORAL HEALTH:
Trumpet Behavioral Health (TBH) specializes in the treatment of children and adults with autism spectrum disorders (ASD) and developmental disabilities. For more information, visit www.tbh.com.

Brave little girl.

Mallory

This is Mallory. Easily my most challenging daughter. Teachers are always shocked when I tell them that Mallory is the bossiest child in the house, and the one behind most of the drama that occurs among my children. At school, she shines. She adores her teachers, works hard, and SERIOUSLY aims to please. At home, well…let’s just say she lets her hair down. I have butted heads with Mallory more in her eight years than I have with Kayley in her sixteen! One thing about Mallory that’s pretty consistent, though, is the way she steadfastly defends and looks after her twin brother.

The other day, I was out in the world with all four little ones, and we decided to shop for Halloween costumes. Naturally, we hit up my favorite thrift store, which in my opinion should be the starting point for all costume endeavors. As we browsed the racks of second-hand costumes, Pablo started to browse through the toys, and found a little car to play with. He started to run through the (practically empty) store, bending over and pushing the car, and then sprawling himself out to slide across the slick, polished floor. Unfortunately, he bumped into a woman. She looked down at him, he looked up at her, and said, “MOVE!” Rude? Oh, yes. I was about thirty feet away, not close enough to apologize and explain, and remind him of the proper way to say excuse me, and I’m so sorry, and whoops, let me just go around you.

Another woman, a bystander who was not involved in any way, bent down to Pablo’s level and said, “NO! You don’t talk to grown ups that way! You are RUDE!” MALLORY approached the woman and said, “I’m sorry my brother was rude. He doesn’t know any better and we’re trying to teach him. He has autism.”

At this point, I was making fast strides across the store because I could see from Mallory’s expression and the woman’s expression that things were going badly. When the woman saw me coming, she turned on her heel and started to walk away. I stopped her to ask what was going on, and she said, “This…BOY…is out of control. He’s using bad language, he’s just crashing RIGHT INTO people. He crashed RIGHT INTO that woman over there. He’s just out of control.” I approached the crashed into woman with Pablo and he apologized to her. She laughed, and said it was no big deal. This seemed to enrage the second woman even more. “He has autism,” I explained, “And we’re trying very hard to teach him how to act in the store. Sometimes he gets away from me, though, like children do…” She rolled her eyes, PATTED MY SHOULDER, and walked away.

As she walked away, Mallory leaned in close. “Mom, that lady was SO MEAN to Pablo, and honestly? She was so mean to me, too! She was involved in something that wasn’t in her business at all. She said we were the rudest children she’s ever seen in her life. I apologized and she wouldn’t even stop glaring at us.” Rage bubbled inside me and I felt my face get hot! I saw the woman, just feet away from us at that point, paying for her items at the cash register. I took the deepest, most ginormous breath ever and willed myself to keep my feet planted on the floor and not fly over there and start some shit. Did it make her feel big to tell off an eight-year-old? Really?

Later on, Paul and I had a long talk with all the kids, trying to repeatedly drive home the point that Mallory did JUST THE RIGHT THING. I’ve always tried to show my kids that you can maintain some grace and dignity even in the face of rudeness and hostility. I stand by the idea that it’s better to come from a point of educating people in the hopes that next time they encounter a kid who acts rudely, they might think twice before dropping any guerrilla-style drive-by discipline. Here on my blog, though? I have no problem calling that lady out as a total cunt.

It upsets me because I encounter this so often. SO. OFTEN. Probably every other time we go somewhere, I am reminded of how impatient, unforgiving, unsympathetic, indignant, and without compassion people are. People HAVE BALLS, MAN. They sigh heavily, roll their eyes, talk shit in stage whispers, and generally just MAKE IT KNOWN TO ME that they do NOT appreciate being inconvenienced for twenty to thirty seconds of their life because my son made a loud squawking noise or stepped into their path at the grocery store. They make it their business and feel it necessary to comment if they hear something they perceive to be improper. It affects me deeply, but it affects my other kids as well. Pablo might be oblivious to someone calling him a retard or “the rudest child I’ve ever seen in my life” but it cuts me to the core, and although you might not realize it, it hurts his sisters, too.

If you scroll down to the bottom of the page, you can see links to previous posts of mine, whatever I was writing about on or around this date, every year I’ve had this blog. I read through old posts once in awhile and I really miss the person I used to be – I was so much sunnier when the kids were littler. I’m still pretty bubbly, but I also have a side to me that is completely jaded and bitter. PEOPLE, I AM DOING THE BEST I CAN. Can you imagine going through life, trying to be the best mom you can be to your kids, and having your parenting questioned and your child insulted and glared at nearly every time you leave your house? It’s something I try hard to insulate my other children from, but clearly, they are affected by Pablo’s disability as well.

Paul and I always remind the girls to look out for one another and especially to look out for Pablo, and thankfully, that seems to be sinking in a little bit. He’s a lucky little boy that he’s going to have four sisters to help guide his way through life. Fingers crossed that by the time they reach adulthood, society will be a little more tolerant and a lot more educated about individuals with autism. And I can only hope that Mallory will always be so mature and composed when confronted by ignorant, rude people.

Tonight.

“Yay! Golden Spoon!” the kids start to squeal as we pull into the parking lot. “I don’t like cheesecake. It tastes like cheese. I like cotton candy. I like sprinkles…” Pablo enunciates every syllable so carefully, reciting the same familiar script he says to nobody in particular whenever we get frozen yogurt.

We enter the store. It’s crowded and busy, like all yogurt shops seem to be. Why is frozen yogurt suddenly so popular? And why is every frozen yogurt shop the size of an ATM vestibule? An entire family has entered the store just moments ahead of us, and I know we’re in for a long wait. The girls and I get in line, and Nikki begins to read the selections from the menu board. After just a week and a half in 1st grade, her reading skills are already showing major improvement. Pablo heads for the bathroom, which he usually does when we enter any restaurant. He likes to check out the ceiling vents.

“Pom…pom…” Nikki tries to sound out pomegranate blueberry. It’s not working out so well. I remind the girls that they can each pick one topping. The store is so crowded; it’s hard for the kids to see the menu. We crane our necks around the crowd in front of us. Then I see Pablo. He’s frightened. Is he overwhelmed? No, he’s hurt. I see tears in his eyes. He shrieks loudly, and the sound seems amplified by a million in this tiny space, crowded with people. Then, he says it:

GOD DAMMIT!

His words pierce the air, and I hear people gasp. “What the hell?” I hear from one man. People don’t know what’s going on. “Jesus!” another says. People look at one another in horror, and then look at me. I try to reach Pablo. He doesn’t see me. He sees five adults, strangers to him, glaring at him. I call to him, “Pablo, I’m over here…” One woman locks eyes with Pablo. He is embarrassed. He knows he has done something very wrong. The woman glares. “You shut up.” He yells. “No, YOU SHUT UP!” She yells back. She is angry. He is afraid. I am numb. “Pablo, you don’t speak to people that way. Apologize to that lady.” He steps toward her, waves a hand at her and says, “Sowwy?” She makes a disgusted, “Tsk!” sound and looks away.

I take Pablo’s arm, and whisk him out the door. The girls follow me to the car, and we get in. It’s immediately clear that we aren’t sticking around for frozen yogurt, and Lexi begins to wail. “It’s all your fault, Pablo! It’s always your fault!” she screams. She kicks at his seat. He puts his face in his hands and quietly weeps. Mallory touches my arm. “Mom, that lady was being kind of mean to Pablo, too. I mean, he shouldn’t have said that, but…” Mallory always looks out for Pablo. She asks if we should go talk to the lady some more. I have no idea.

Five minutes pass. Lexi begins to settle down. Pablo isn’t crying anymore, but his face shows defeat. I hear Paul’s words in my head, “Why do you care what other people think?” But I do. The idea of people feeling disgusted and horrified by my little boy…it’s too much for me to bear. He’s a child. He’s seven. He’s a little kid.

I leave the kids in the car, and re-enter the store, alone. The woman is still at the counter, picking out toppings. “Excuse me, ma’am? I just wanted to apologize for my son,” I say. The words stick in my mouth. I am truly stuck, not knowing what the appropriate reaction should be. Her night was spoiled by my son’s rudeness. She deserves an apology for that. “He has autism, and he got hurt in the bathroom. I’m sorry he was so rude to you,” I say. “No, I’m sorry. I shouldn’t have snapped at him. I figured he had…something like that when I saw you take him out of here. I’ve had a hard day, dealing with kids all day. I shouldn’t have said that.” Fuck no, you shouldn’t have said that, I think to myself, but say instead, “Have a nice night, then.”

We drive away, and the kids ask if we can get ice cream somewhere else. Pablo pipes up from the backseat, “I need to call the police, Mommy. I yelled at a lady. I need to call them so they can take me away from here.” My heart shatters into a million pieces and my eyes burn with tears. Just another day.

Feeling helpless.

Ohhhhhhhh my gosh, I am exhausted. Today was SUCH a hard day with my boy. It’s been a long time since we’ve had such a trying day, and I really can’t remember the last time I saw Pablo struggle so hard against the environment around him. All day long, he’s been on edge. One of the things that keeps setting him off is these damned Legos! He’s trying to build a (kickass, amazing) Lego house and he’s having trouble with it. This is always a challenge, but it seems WAY worse today.

By dinnertime he was so full of rage, we barely got through our meal. And the hours between dinner and bedtime pretty much sucked a fat one for the whole family. Pablo sobbed and wailed and screamed and yelled at people. He calmed down briefly when I held him closely under a blanket on the couch, cupping my hands over his ears. I actually broke out the melatonin toward bedtime, hoping to calm his mind down a little bit. He did end up falling asleep pretty quickly, and I’m praying he sleeps well tonight.

He might be getting sick, or he might be just ready to go back to school after being off track for the past three weeks. I suspect he’s going through some brain growth stage at the moment. These “growth spurts” are hell for all of us, especially Pablo – but they always come before some huge breakthrough. We’ve seen it time and time again. I sure hope that’s what this is. I hate seeing my precious boy struggle so much to just get through a normal, typical day.

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