LIFE IS A SPECTRUM

mandi-invite

Where ELSE were the neighborhood pigeons going to nest??

1. I started a new WONDERFUL job. And thank goodness I work for my sister, because no one else would have put up with my absenteeism this month. Read on ...

2. I had respiratory flu -- twice. The kids had it once, as did Dave. That sort of counts as me having it five times.

3. I had stomach flu. No one else did.

4. Then I woke up and tried to wash my face with Vick's Vapor Rub.

5. Billy's IEP meeting was awesome. (More on that later.)

6. School ended. Summer started. Which brings us to ...

7. I registered Billy for all-day ABA Camp ... they don't call it “Camp Escape” for nothin'. Come on, Monday!

8. My dad went in the hospital (he's fine now).

9. Our van broke down (it's not).

10. Willow got into at least a dozen fights ... with boys.

11. Billy was named "Terrific Kid" (the good behavior award) at Buck Lake Elementary! And no, Dave, it was not because he was out of school sick the week before ...

12. I turned 40 and Dave and I sang a bunch of 80s songs at my party. (For video of this Awsuuuuuum event, click here.)

This is just my lazy way of making excuses for not blogging very much lately. I'm starting to get act together again, so I won't be such a stranger any more, I promise. But the greatest thing about taking a little hiatus is that now I get to go catch up on all YOUR blogs! Thanks for hanging in there with me ...

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Snippets 'N Stuff

Vick's Vapor Rub? Good grief. You must've been delirious!

Ack! Sorry to hear about the bad stuff, congratulations on the good!

Happy, happy Birthday, Amanda! May this be your best decade yet! Congrats to Billy on his award!

Word Nerd

Thanks! I'm the new Communications Director for Pea Green Solutions. Working from home this week, though, because Billy has a week off between end of school and start of camp.

Congrats

So...what kind of work are you doing for your sister?

Congrats!

Total 5 comments

Billy LOVED his birthday party this year! He turned four, and Dave and I got to experience what most parents love about holidays and special

S_BillyBday10_AM5

Sugar in the mornin' ...

occasions: Our child understood it was a special day, he was excited about it -- before, during and afterward -- and he had a great time.

That hasn't been the case in past birthdays, Christmases, Halloweens, etc. Generally speaking, holidays with crowds, new people and places, strange food and lots of noise have just set him off. We have two years of Christmas pictures of him lying on the floor screaming. Admittedly, one year he was forced to wear the cutest little Christmas suit with a plaid vest and a clip-on tie, and looking back, it does look pretty uncomfortable.

The parts most kids get excited about still probably aren't his favorites. Present-opening, for instance, is still stressful. But I understand his frustration: As soon as he opens something he likes, someone takes it away from him and hands him another wrapped-up package. Ripping open paper isn't nearly as fun as beating on his drum set, so he doesn't see the point.

Last Christmas, halfway through the process, he started singing the “All Done Song: “

S_BillyBday10_LUN2

Sugar at lunch time ...

“All done presents, all done presents, all done presents, it's time for something new ... ALL DONE PRESENTS!!!!!” He repeated this with an “All Done Santa” song when my dad showed up, decked out in full Santa Claus outfit, dragging a new inflatable space shuttle behind him. Luckily, the space shuttle wasn't wrapped.

And just because Billy is singing, that doesn't mean he wants you to open your mouth. He still has some sensitivity where sounds are concerned, and he doesn't mean to offend when he occasionally puts his fingers in his ears when people start to sing or talk loudly.

In fact, on his birthday, Dave and I grabbed Willow first thing and sneaked into Billy's room while the lights were still out, singing “Happy Birthday” to surprise him. From the darkness, all we heard was, “Please stop singing.”

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Sugar at half past two!

I asked, “You want us to stop singing your Happy Birthday song?”

Billy: “It stinks.”

He doesn't pull any punches, my guy.

So we were especially delighted with his delight at his party. We held it at the Mary Brogan Museum of Art and Science. He ran around wildly as the party prep was going on and greeted most new guests by throwing a beach ball at them and screaming, “Happy party!"

The staff at the museum was fantastic. Our assigned “Educator” led the kids through an activity in the Ecolab where they got to pet a hedgehog, a guinea pig and a horseshoe crab. And other than one minor incident in which Billy attempted to catch his favorite colorful fish out the aquarium with his bare hands, it all went well.

We returned to the party room on a high, and it was time for cake and [groan] singing. But to my amazement, when the room erupted into “Happy Birthday to You,” Billy stood there with a giant grin on his face, looking around and around the room, like it had just occurred to him that the party was for him.

Present-opening was still a mixed bag. He loved all the presents. ALL of them. He gives every item in his possession some attention at some point throughout the week. Yesterday, I found him lying on top of his new Toy Story beach towel, studying all the characters very carefully.

But at the time, he was frustrated, once again, by the unfair request made of him: Open up a totally awesome Hot Wheels workbench and then set it aside and open up something else awesome that you can't play with. Eventually, I had to help with the opening and just settle for showing him the presents while he – and all the other kids – put together his new Thomas track. Anyone else have any ideas about how I can better handle present-opening the next time it comes up?

After present-opening, the little kids and big kids (moms and dads) were each given two tokens to use in the Videotopia exhibit, an arcade disguised as a history of video games. Well, it does have a lot of history of video games in it, but the crowd of kids was around the Star Wars racing game, not the trivia quiz about the history of Sega.

They even have an old Pong video game. Delighted that there was a game the controls of which I could operate, I put my token in and relived my childhood. For a minute. Before staring dumbfounded at the game and wondering, “WHAT exactly is fun about this?” Surely, actual Ping-pong or tennis would have been much more entertaining.

Billy loves the arcade, though I'm not entirely sure he knows the difference between when the game is actually on and when the game is in demo mode. Nonetheless, we've dumped tons of tokens into that “exhibit” over the past couple of months, since it replaced the “Dinosaurs” exhibit. (FYI, I'm told “A Bug's Life,” by the makers of the animatronic dinosaurs exhibit, is probably coming in January.)

His favorite game: something he refers to as “Crazy Train” that he plays with Dave. I'm not sure if that's the actual name of the game or not, since he calls the “Whack a Mole” game “Gorillas!!” and won't be dissuaded that it's not a game about gorillas who jump out of holes in the ground.

At the end of the day, sleepy and happy, he asked Dave, "Do you remember the Crazy Train?" Yes, we remember. More importantly, HE remembered. And he ASKED us about it, something that had happened earlier in the day – the first time that has every happened.

Now we have something else to celebrate.

Reader Comments

Present opening

Audrey is the same way with opening presents. She's getting better and better over time, but it's still not her favorite. For her 4th bday party, I actually said in the invitation that presents were not required (of course everyone brought them) and that we were not going to do the ceremonial opening at the party. Afterwards, I wrote a personalized thank-you note letting them know how much she loved their presents...because like you said, she DOES loves them...just, after the fact. I know that it's a social skill that she has to have, but at the same time...it's her birthday! I didn't want to be putting her through her paces at her own party!

From Amanda Broadfoot

What a great idea! I too tried the "please don't bring presents" route in the past, but all that happened is that most people did anyway, and the few people who actually followed my instructions felt bad and sent a present later.

But I love the idea of just sending a note later with a specific thank-you about the present that individual sent. That would make his birthday -- and other holidays -- a lot less stressful. I could probably even include a photo of him/gift with the note, since we take pictures of him with EVERYTHING. A friend of mine once told me that Billy would be the first child in actual danger of having his retinas burned out by exposure to the camera.

Happy Birthday, Billy! (And congrats, Mama!)

Billy looks so happy in these photographs! I'm so glad he had that "Ah ha! Everyone's here for me!" moment. But I'm even happier he was able to recall and talk about the party with you later. It must have really meant something to him. That's awesome on about seven different levels. Good job, Mama!

Two things:

1) I think birthdays are just as much a celebration for parents as they are for their guests of honor. You made it through another year of solid parenting, and the proof of your success is in that smile sprawling all over Billy's face.
2) I laughed out loud when I read your comment about Billy not knowing the difference between the actual video game and demo mode. My boys (3 and 5) are thankfully still young enough to sit in front of the demo and think they're actually playing. It cuts video game frustration by 100%--for them and for us. So funny. I almost wonder if demos exist mostly for that reason.

I hope you're having a fabulous week! Happy weekend to you!




From Amanda Broadfoot on Birthdays

Thanks so much, Maura. It was a wonderful birthday -- for ALL of us. I can definitely say that this year has been a true team effort. And on my team are a lot of awesome moms and writers, like yourself, who keep me motivated, laughing and inspired every day.

I'm so proud of my big boy. He's STILL talking about birthdays and parties and I can't wait for him to meet all the new friends in his class this year (in just two weeks!) and see how his newfound enthusiasm for other kids plays out at school.

Thank you again for all your support. I truly love reading your blog.

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Total 5 comments

I thought I was turning 40 this week. That's how stressed out I've been; I lost a year.

Mandi38Birthday

I'm actually going to be 39 on Friday. I still get excited about my birthday. Dave calls it "Mandi Awareness Month," because I start reminding him well in advance of the big day and make it very clear what my expectations are: a birthday card made by the kids, a cake with candles that Billy can blow out, a second DVR for our bedroom, and a trip to some place with daily maid service and a heated pool.

But this year has been a little different. Or at least, this month has been a little different. It's been tougher, more stressful.

I want to be honest about the stress and the hard times, because I always write about our breakthroughs, our happy moments and our family's abundant joy. Those moments are worth writing about. But so are the hard times.

I recently read a post on one of the autism support group message boards in which a parents said something like, "What am I doing wrong? I read about all this great progress that other parents have made with their autistic kids and I actually resent them. I have a terrible attitude. I feel depressed. Most of the time I don't know how I'm going to get through the day. I think I have the worst attitude of any parent on here. Sometimes I resent my own child."

Sometimes we all do. And I want to apologize right now if I've ever given anyone the impression that I don't have those days. I do.

I have days when I don't know how I'm going to get through it. I have days when I feel a LOT older than 40. I have days when I am so angry at all these parents who have it so easy ... even though I know in my head and my heart that nobody has it easy. We all have those days.

The past couple of weeks have been hard because Billy seems so angry at me more of the time. He's angry about being asked to go to the bathroom. He's angry about getting dressed. He's angry about getting into the car. One night --or morning, I should say, because it was 3 a.m. -- he was angry about it being dark outside. He pulled the curtain back, looked out the window at the darkness and screamed, "No more night! Good morning! Good morning!"

I'm flattered that he thinks I have control over that, but I was really friggin' tired and not seeing the funny side.

An OT and a couple of parents of autistic kids have all told me that frequently a period of bad behavior precedes a big leap in cognitive ability: the one step back, two steps forward theory. All I can say is Billy must be getting ready to do calculus, if there's any truth to this theory.

We spend so much time trying to understand our kids' emotions, validating their feelings, teaching them how to handle stress and fear and anger. And meanwhile, we beat ourselves up and invalidate any negative emotions we might have as parents.

It's okay to feel like you don't have a handle on things. Frankly, I don't trust anyone who claims to have it all together. But even in the midst of this stress and anger and even depression, we have to keep going. We're parents and we don't get paid vacations. That being said, when I'm having a really hard day, here are a few things that help me center myself again:

1. Asking for help: It sounds so simple it's stupid, but you MUST have someone to help you sometimes. If you aren't lucky enough to have close family around, reach out to the autism community, to your church, to your closest friends, and create a network of moms on which you can lean. Be honest with them, and take the step of actually calling on them, even if it's just to take one hour to yourself.

2. Support groups: Part of the problem with having kids, is that you often don't have time to join the groups who can support you. Luckily, there are a lot of great online support groups now. The members may not be in your back yard, but they can certainly commiserate and very often, they have very good ideas for tackling problems. I am a regular contributor on Circle of Moms Autism/Asperger's Support Group, Autism/PDD Message Board, and the Floortimers Yahoo Users group. There's also a Special Needs Kids section of MomsLikeMe.com.

3. Exercise: Nothing relieves my stress like a long walk. I put the kids in the stroller, where they're safe and sound and strapped in, give them each a cup of juice, pop in my earbuds and actually listen to a book while we walk for an hour. A side effect is that I'm in better shape than I've been in a long time. I truly hate every other form of exercise, but I like to walk. And I like to read.

4. Clear the schedule: When all else fails, when you're overwhelmed and your kids are melting down and you're behind on 45 different projects and you don't know how you're going to get it all done, cancel some stuff. This was one of the hardest things for me to learn to do. But sometimes an afternoon free of appointments and car rides and transitions is just what you and your kids need. People will understand.

5. Clean something. I organize areas of the house when I get stressed: closets, drawers, shelves. I've known people who tackled their ovens, bathrooms or ironing whenever they got overwhelmed. Parenting an autistic child is so full of complicated problems and questions with no easy answers; those questions, and the answers, change from day to day. Sometimes it feels really good to have a problem as simple as a messy drawer to deal with: easy to solve, you know when you're done, and it's easy to see that you've made progress. Parenting is never that simple.

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Willow turns one on Sunday! I can't believe it's been a whole year since one of the best and worst days of my life. Oh yeah, I'm not going to lie to you. Labor was horrible; there was nothing beautiful about it either time for me. And there are still times when I look at my children's beautiful, giant heads that I get a cold shudder down my spine.

willowballpit

My sister used to joke that I was the Grinch Who Stole Pregnancy, but I felt like there was enough propaganda out there about the beauty of the experience; it was my job to be a living, breathing example of pregnancy's ugly dark side. I gained weight from the top of my head to, quite literally, the bottom of my feet (I went up a size and a half in shoes, and even after losing the baby weight, my feet are still as big as Christmas hams); I had non-stop morning sickness and was so hormonal that when I wasn't crying, I was breaking something ... on purpose.

But that is behind me, and my little WiFi is a daily source of hilarity and real inspiration to me. Until she came along, I didn't realize the things that Billy hadn't done as a baby. She hands me things. She pretends to talk. She learnes new words every day. Her vocabulary now includes "Mama," "Daddy," "BEE!" (Billy), "baby," "cat," "up," "ice," "buh-buh" (bottle), "Nan," "Pop," "bye," the list goes on.

And one horrifying profane word that I cannot print in this family-friendly forum. She didn't learn this word from us. This word is not one that gets spoken in our house or even when we get cut off in traffic.

No, this word is a strange example of how children learn to communicate. Willow plays with sounds, and two of her favorite words for a while were "cat" and "cook-cook" (cookie). Well, she kept playing around with variations on these words, changing the vowels around -- "cot," "bok" ... you see where this is going -- until she hit on just the right word to make Mama pop her head up and shout, "What did you say?!"

Well, it doesn't get much better than that reaction to Willow. Somewhere in her little brain, she logged this as the word that gets Mama's attention. And it does. I can't help it. I know the right reaction is to ignore it completely, but I'll be honest with you, if we're in public, I give her anything she wants to shut her up.

Yesterday, I was pushing her around the party store in the shopping cart; I had decorated her in this adorable little "Birthday Princess" crown and sash and she was smiling and happily shouting her new favorite word over and over again. People were giving me looks. So I started saying, "No, you can't have a COKE," in the hopes they would buy it. Or, "Oh, you want a COOKIE? No problem; here ya go." And she tossed the cookie down and shouted the word again. I just got out of there before anyone could call Child Services.

BillySmilingWillow

By the time she was born, we were already pretty sure Billy was autistic, even though we hadn't received the official medical diagnosis yet. At that point, his verbal skills were still very limited, so we didn't know how bad things would get. I didn't know if he'd ever learn to communicate and be independent or if he'd need care the rest of his life.

These days, we're very confident about the progress he's making, and feel very optimistic that within a couple of years he's going to be very close to his peers in development. But a year ago, I looked at my baby daughter and thought, You'll still be with him when we're gone. You're so small and already have such a big responsibility. I have known adults who care for adult siblings with special needs and they are unsung, uncelebrated, often unappreciated (sometimes even by those they care for) heroes.

So a year later, it does my heart good to see Billy pull his baby sister into his lap. When she sees him, she shouts, "Bee!" and "Up!" He smiles, hugs her and holds her, wrapping his big lanky body around her. When she's in the tub he says, "Willow, close your eyes. I'm going to wash your eyes," imitating the things I say to him when I wash his face. And then he gently helps me wash her hair and brush it.

It never occurred to me that he would take on the responsibility of looking after her so quickly. But he's the big brother. She's the baby sister. And with any luck, they'll spend the rest of their lives looking after one another.

Reader Comments

Tears!

This is a beautiful piece. My heart swelled with joy and my eyes filled with tears. You've got two awesome kiddos!

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