The boy who doesn't play with toys

Playing with toys is an integral part of childhood. It’s never been that simple at our house. Monkey doesn’t really play with toys, and looking back I realize he never really did.

When he was little he only played with toys to illicit some sort of response from them. The only ones he enjoyed were electronic in some form, often emitting a way-too-loud, obnoxious noise or tune. He would push the buttons repetitively to hear the same sounds over and over until I was ready to throw the toy out the window. Often, he would run the batteries out of juice in mere days. We used to spend obscene amounts of money on batteries until we finally wised up and decided to let the batteries die and stay dead.

Even though he didn't talk much, we would hear him mimic the various toy sounds all the time. It drove us nuts, but we were happy that he was happy. Of course, we didn’t know what echolalia was back then. He was our first child, and we didn’t understand that his type of play was not considered typical. His intensely sound-driven play got to be pervasive and unbearable at times. I had to ask the family to no longer buy any gifts that required batteries or made any sounds at all. Any contraband toys we received were re-gifted to another family who could use them or else given to charity.

There was another way that he played with toys that wasn’t typical. I have lots of pictures of Monkey lining up his toys across the living room and down the hall. He was meticulous about making everything perfect. Titan and I would run around with the camera, ecstatic with his attention to detail, capturing how amazing our little boy was. We thought this kind of play was revealing his gifted intellect.

Along the same lines, Monkey used to stack wooden blocks and interlocking Megablocks into tall, singular towers as high as he could reach. He would climb onto the coffee table and continue stacking them as high as possible, taking much time and effort to do so. Then, when Titan got home from work, Monkey would get help to make the tower even taller. I have pictures of Titan holding Monkey in his arms as they worked diligently to make the tower climb even higher without knocking it over. We were so proud!

We had no idea that all of these forms of play were signs of autism. We continue to be proud of our son and see some wonderful gifts in him, but we also understand him better now. Diagnosis helped us connect the dots of all of his quirks, talents, and areas of struggle.

Chaaarge! Retreat!

Do you remember watching Looney Tunes? You know, when good cartoons were a Saturday morning tradition? My boys have recently decided their favorite is the “Bunker Hill Bunny” episode with Bugs Bunny and (Yosemite) Sam von Schmamm trying to storm each other’s fort.

Bugs defends his wooden fort with a single cannon and Sam defends his formidable stone fort with multiple cannons. As always, Bugs calmly outwits the irritable Sam. A highlight of the episode is when Sam comes out with a musket bayonet and charges Bugs in the wooden fort. Bugs charges back with his musket bayonet and they end up switching sides and changing their respective flags from “We” to “They.” It is this portion of the episode that has enamored my boys, keeping them entertained for hours as they recreate it in their play on a regular basis.  

Like many children on the spectrum, they both have a talent for absorbing things they hear from their favorite shows, cartoons, songs, and games. I consider this to be a verbal form of photographic memory. Many people call it scripting, but at our house we call it dialoging. Dialoging has become a preferred form of stimming for both of my boys, and is a way for them to perseverate on something they really like.

In times past, Monkey was the only one who did this. Now that Prince Charming has also honed the skill and the boys are finally learning how to play together successfully, they’ve found it enjoyable to dialog in tandem. They derive intense satisfaction from repeating particular scripts over and over. At times they have an uncontrollable need to get all the words out from their current favorite dialoging subject, and it’s very difficult to get them to stop in the middle of this type of activity. I discourage them from dialoging out in public, but I usually let them do it freely when we’re home. I believe that if they have the overwhelming urge to stim, home should always be a safe place to do so. If I simply can’t listen to it anymore, I have them dialog in their rooms with the door shut.  

As I mentioned, their current focus is on recreating the Bunker Hill Bunny episode. Over and over. And over. They each choose a part to play and then go through the episode, providing both dialog and action. Serving as their pretend musket bayonets, they use the plastic Star Wars light sabers that they got for Christmas.

It always starts out super cute. They have great attention to detail and it’s impressive how they work together to be accurate. They take turns playing different characters and have fun mimicking their tone of voice and mannerisms. After the 50^th time in a row in the span of about an hour, it’s a smidge less cute.

Remember Scrat, the saber-toothed squirrel in the movie, Ice Age? You know how he gets a twitchy eye when he’s reached the end of his proverbial rope? Yeah. I get that. Completely. By the end of the night, I can sometimes be found wildly grabbing for their light sabers and making threats about never allowing them to watch Looney Tunes ever again. Ever. It’s usually about that time that I’m wishing the martini fairy would bring me a stiff drink, and that the sleep fairy would knock my kids out into a deep slumber. But, I digress…

GFCF Pumpkin Chocolate Chip Muffins

What do I like to do on a cold, snowy day? Bake! One of our family’s favorite allergy-free treats is a recipe I adapted from an awesome gluten-free blogger, Karina the Gluten-Free Goddess. I have made this recipe countless times and each time it’s absolute perfection. These are some of the best muffins I have ever made, and you honestly cannot tell that they are free of gluten, egg, dairy, soy, and nuts.

The original recipe for Banana Chocolate Chip Bread that inspired these muffins is from Karina’s Kitchen. Her allergy-free recipes are always wonderful and she’s got some great ones for these cold, winter days.   

Here’s the recipe, as I prepare it:

Total Education Hour Radio Show

Last Friday, February 18th, I was one of the callers on the Total Education Radio Show, featured on BlogTalkRadio. The show is hosted by Neil Haley, the Total Tutor. Featuring special guests Dr. Shellie Hipsky and Dr. Kari Miller, the topic of discussion was educational advocacy, IEP's, inclusion, and procedural safeguards.

I was the show's second caller (right around 28 minutes into the program). On the topic of IEP's and educational advocacy, I had a chance to discuss the importance of connecting with other special needs families locally through a support group. It is these connections that have a huge impact in knowing what to expect at an IEP meeting, particularly when you are new to the process.

It is also very important that you are not alone when you go to IEP meetings. Bring your spouse, a friend, neighbor, or anyone who is willing to sit in the meeting with you to be another set of ears. It's even better when they can take notes for you so you can focus solely on interacting with the IEP team.

I also talked about how a parent should not feel pressured to sign the IEP before the meeting's conclusion, particularly when modifications are made during the meeting. It is perfectly alright to take a copy of the IEP home with you to review with your spouse, a friend, another special needs parent, or an educational advocate. Getting another person's perspective can often be very helpful to ensure the IEP is written in the best interest of your child.

To listen to the Total Education Hour show from 2/18/11, click here.

Quick and Comforting: GFCF Chicken Alfredo Macaroni

Last night I needed a quick dinner that I knew everyone would eat. I had chicken thawed in the fridge and I didn’t want to make anything overly complex. I really wanted comfort food! So, with a few simple ingredients and about 20 minutes of time, we had a hearty and delicious dinner that everyone ate with gusto.

Keep in mind, you can change things up with whatever you’ve got laying around the house.

GFCF Chicken Alfredo Macaroni

1 pound diced organic, free range chicken (or other protein of your choice)
1 box (8 oz) of GF Ancient Quinoa Harvest macaroni pasta (or other GF brand/style of your choice)
1 to 2 cups (½ to 1, 8 oz package) Daiya mozzarella style shreds – dairy/soy/gluten free
½ to 1 cup frozen organic peas
½ cup sliced mushrooms (not shown in the picture)
½ to 1 ½ cups organic free range chicken broth (I used approximately 1 cup to thin cheese sauce)  
1 to 2 tbsp organic olive oil
spices to taste (I used sea salt, pepper, poultry seasoning, onion flakes, garlic powder)

Try adding other spices and veggies, or changing up the quantities to make it exactly how you and your family like it. If your child can tolerate cheese made from goat’s milk, sheep’s milk, or raw cow’s milk, feel free to experiment. Since my boys can handle cheese made from sheep’s milk, I love adding around ½ to ¾ cup of feta to give it an extra creamy texture and lovely flavor.

Now, let’s get started!

Organization is good for the soul

You may remember that earlier this month I laid out plans to tackle the paperwork monster – my office. Anyway, yesterday it got really emotional. Who knew that pieces of paper could hold such strong emotional attachment?

I spent about 3 hours working in the office, and I went through all kinds of things. I saw the very first drawing Monkey ever made. I also found about a half-dozen of his baby teeth, and marveled at his first attempts at writing. I glanced through paperwork from the hospital when he was born, along with the momento birth record signed by the doctor who delivered him.

There were well-baby visit records, with growth charts and little dots indicating where my boys fell on the curve. I found a large stack of immunization information sheets from when the boys got their shots. Wow. Reading through those with new eyes made me tearful at my own ignorance back then. Boy, did that get to me! Even now, it’s getting to me as I write this. Those were the days before I truly understood what autism was and what impact my choices would have on my children.

I even found the Christmas letter I wrote when I broke the news of the boys’ diagnosis to the family and our close friends. That was 2007. It was a big year. Monkey was 4 and Prince Charming was 2. I can’t even describe how little sleep I got while I was up at all hours cramming my brain full of information, trying to do something…anything to help my children. I was a slave to my car, chauffeuring them around to appointment after appointment, most of them a considerable distance from our house. There were receipts from classes I attended, and lots of progress notes from therapists. I rolled through that year like a freight train for sure.

I also found a handwritten letter from a relative who passed away a year ago, and I took some time to honor her memory. There was so much more to appreciate, digest, and filter through. All of it brought back a flood of memories, some good and some not so much.

I didn’t expect cleaning my office to be so emotional. I’m about halfway done now. I’ve filled my shredder more than 4 times, recycled about 4 boxes worth of paper, and packed up about 6 boxes. There’s still a lot to do. I’m getting there, slowly but surely.

Yesterday’s experience makes me wonder what other things I have yet to find. There are forgotten moments among the disarray, waiting to be rediscovered. I guess organization really is good for the soul.   

    

Good morning to me!

Whose house did I wake up in this morning? Whose children are these? Am I still dreaming? Am I in the matrix? Neo? Pinch me!

Well, apparently this is my house and these are my kids. Normally, I run a very tight ship in the morning. Things are literally scheduled to the exact minute. In order to get everything done with the least amount of resistance, we parade around in carefully choreographed movements, with me as the conductor. This precise timing and routine is the only way I can get 2 kids with 2 different lunches and 2 different backpacks onto 2 different buses headed to 2 different schools, all within 30 minutes of each other. The schedule is a necessity, particularly when you’ve got kids that need routine to function properly.

At one time, we had to use a picture schedule every day. It made the difference between having a decent day versus one full of meltdowns. Our current structure is based upon the success we had while using a picture board.

So, imagine my surprise this morning when I woke up to both kids out of bed and quietly starting their day. No fighting. No monkeying around. No yelling. No running. Just productivity. Really, who are these kids?

I stumbled out of the bedroom in my sweats and slippers to see Prince Charming in the bathroom. What? That should happen 20 minutes from now! Whenever I suggest we move up using the bathroom to before breakfast, he always pitches a fit. But, he’s in there. Willingly. Going. And, it’s not time for that yet! I mask the surprise on my face and walk by nonchalantly saying, “Good morning, honey.” I don’t want to jinx it by mentioning the fact that he’s in there and that I’m proud of him. That could make Grumpy Badger come out of hiding, and I’d rather keep Prince Charming around this morning, thankyouverymuch.

As I’m walking down the hall I hear a beeping sound. It’s too early and I haven’t had my coffee yet. I can’t place the sound and I’m starting to feel a little concern as I hear the sound repeat. What is that? I turn the corner into the kitchen and see Monkey standing in front of the toaster over opening it up and hitting the “stop” button. What is this? I try to force my brain to jump into overdrive so that I can process the information in front of me. Giving my brain a second to turn itself on I say, “Good morning, sweetie.” Then it hits me. Monkey has made his own breakfast!

Words start tumbling out of his mouth and I follow what he’s saying with my eyes, taking it all in. “Hi, mommy! I made waffles.” I see that he had climbed onto the counter to grab a plate from the cupboard, and that he got the applesauce out from the fridge. He had obviously pulled the frozen waffles out and placed some on the rack inside the toaster oven. He had set the timer and done everything correctly. Wow! I’m sort of stunned. I see that he’s not sure how to get the waffles out of the toaster oven because everything is so hot. So, I quickly turn from happy and dumbstruck observer back into mommy mode.

Now, let’s take a moment here to discuss the significance of this. Monkey has always had significant tactile defensiveness, meaning he can barely bring himself to touch stuff that is wet, slimy, or excessively cold or hot. Let’s see here. Frozen waffles…are cold and they make your fingers wet when you touch your warm fingers to them. And, I already told you about Prince Charming’s need for routine, and how doing things out of order is very uncharacteristic. Both of these things are big deals. Big. And they happened simultaneously!

Getting back to our story, I show Monkey how he can use a utensil to safely pull out the hot toaster oven rack and slide the waffles onto the plate. I demonstrate with one and he does the rest, following my example. Then, he tips the jar of applesauce over and pours out a dollop onto each waffle, just the way he likes it. Well, there’s also applesauce all over the plate and part of the counter, but we won’t worry about that right now.

He walks his plate of food carefully over to his chair just as Prince Charming enters the room. They both sit down to run through the rest of their routine as previously scheduled. I pull out their vitamins and am silently marveling about what I just experienced. It’s soaking in. Yes, this really did just happen. I’m proud of my boys, and I share that with them. They flash me their dazzling smiles and the rest of our morning routine is flawless. I even had time to talk and cuddle with Monkey before he left for the bus.

I could get used to this. Here’s hoping for a repeat sometime soon.

Happy Valentine's Day!

Today is a good day for poetry. It's Valentine's Day after all! I found a great poem that serves as a reminder to simply stop and take a moment to love your child right where they are at.

Just For Today
Written by Delia Thompson

Just for today, little one,
I'm going to forget that you're autistic
And remember that you're a child.
For this brief shining time,
I will only see the beauty of you and your world.

I will marvel at the spun gold of your hair in the sunlight.
How can anything be so impossibly brilliant?
I will see the blue-green of your infinite eyes
And not worry if they focus on me.
I will admire your concentration
And not mind that it isn't directed in the usual way.

Your smile and laugh will bring me joy.
It won't matter what caused them,
they are marvels unto themselves.
Through your eyes I will delve into the unseen,
Looking at the world with that perspective unique to you.

I will see your lines of leaves and stones
And share your happiness at their precision.
I will close my own eyes
And let the textures you explore overwhelm my senses.
Spinning in circles with you,
I will let go until all is lost but the dizzy.

Just for today,
I will close my books and ignore the research,
the worry, the 'shoulds' and the shadowy future.
You are my baby, my son, my love.
Today, we play.

 

Source: http://www.child-autism-parent-cafe.com/just-for-today.html 

A love poem from Monkey

Monkey came home from school yesterday with a cut-out red construction paper heart in his hand. It was for me! Oh, boy! My heart was already getting squishy and I hadn’t even read it yet.

On the first side it said, Love Poem.

In black marker on the other side, he had written the following words:

Dear Angela, (Why is my kid writing my name instead of “Mom?” Oh well, moving on.)

You are loved from me. And I love you. (Ahhhhh! I’m having a small mommy love stroke right now. Do you know how many years I waited for this kid to say “I love you?”)

You love me like an eel. (Say what? I asked him about this. He said he picked eels because they fly. Um, okay.)

And you nad I love. (Again, say what? He told me this was a made up love sentence and that “nad” is the made up word that needed to be in the sentence. Alrighty then…)

You are like gold. (So sweet!)

And an pecan. (So, I’m crunchy, too!)

I gotta love my Monkey! Have a fun weekend of preparing Valentine’s Day cards, and may you get your own handwritten love poem from your little Monkey!

Meltdowns happen

You know the saying... “Sh*t happens!” Well, I can tell you that meltdowns happen! And they can be loads ‘o fun! Like poking your eye with a sharp stick kind of fun. I had the distinct pleasure of working through a meltdown last night with Grumpy Badger.  

Granted, he’s had some big transitions recently. He started a new schedule at school last week. We are working to integrate him from half-day into a longer school day, eventually moving him into a regular classroom. I think the changes are wearing him out, which makes his meltdown fuse shorter than normal.

I could tell when he got home from school that it might be an interesting night. He was very reactive to everything I was saying, and any demands placed upon him launched an automatic tirade of complaining and “I don’t want to” responses.

By the time we got to his social skills group, he seemed to be more cooperative and I thought we might be able to redeem the evening. Toward the end of his appointment, he was becoming unfocused and non-participatory. The meltdown alert system in my head started to sound the alarm that there might be impending doom sometime soon. I was right.

Diplomatic Warrior

Diplomatic warrior. Sounds strange, doesn’t it? Well, I think it’s a term that fits me. There was a time in my life when I was disparagingly dubbed a “diplomat.” In fact, being too diplomatic cost me an amazing opportunity while I was in college. Ultimately, that loss brought me to this very moment - fighting the good fight for my boys.

Our family’s journey with autism has caused me to become the warrior mom that I am today. I wear the badge proudly. I work hard to help my kids. If you get in my way, prepare to be steamrolled by one tough Mama Bear! My boys have made amazing strides, but it certainly hasn’t been easy. Nothing about it has been easy. But, they are recovering, and I can tell you that life is better now than it was even a year ago.

I’ve become a different person over the past few years. For instance, I never thought I would run a support group. Ever. But, I’m now in my third year of sharing and learning with a group of great parents. We all work and fight to help our children in the best way we can. A label doesn’t have to define your child’s experience. In fact, it can propel you forward to positive change.

While working with my group and a local nonprofit over the past few years, I learned that legitimate connection with people often trumps the need to always have the “right” answer. I can be strong-willed and opinionated. There are a few topics that I could easily do a lengthy verbal dissertation on. Some of my poor friends have heard me do just that! I don’t know how they can put up with me sometimes. We all have our hot-button issues, but we also learn how to pick our battles. Honey is better than vinegar, right?

There have been times that I’ve gained knowledge and perspective by simply shutting my mouth and listening to ideas that challenge my view. It doesn’t mean that I will always agree, but sometimes I can truly see the value in something that is exceedingly different from my own current thinking.

The autism community could use a good dose of diplomacy right about now. Facebook has lit up the past few days with issues that divide the various autism “parties.” I’ve also seen this kind of division and rhetoric in my own community. There are so many reasons to have a strong viewpoint when it comes to autism!

Do you think it’s safe to vaccinate, or are vaccinations contributing to the incidence of autism?

Do you believe in embracing neurodiversity, or do you choose to pursue biomedical treatments to help alleviate and improve medical symptoms related to autism?

Do you think Dr. Wakefield is a quack, or do you think he’s a doctor who has risked his entire career to help families with autism?

These and other topics are polarizing. Parents are tired from their daily autism battle. When you throw in strong dissent from the very thing you’ve cried and bled over, things can get messy. And, it can get very ugly, very fast.

As the saying goes, “Can we agree to disagree?”

When was the last time you had a discussion with a friend about religion or politics? Do you always have the same opinion as they do? Probably not. I think this easily carries over into the world of autism.

As far as I’m concerned, my role is pretty simple. I choose to share my experience so that others might have an easier journey with their child. You may disagree with my advice, opinion or methods, but that’s okay. And, I might disagree with you, too.

Autism is so prevalent and pervasive that it is literally kicking our collective backside right now! I’d rather fight beside you than against you. How about we all give each other a measure of respect, show some diplomacy, and battle on?  

Seeing the green flash

Have you heard of the green flash? It’s an optical phenomenon that has been popularized by the likes of Jules Verne and, more recently, in the movie Pirates of the Caribbean: At World’s End. The green flash is a glimmer of green light that appears momentarily at sunset as the sun dips below the horizon. Have you seen one in real life? I have, but not in the beauty of the sun setting over a calm sea. No, I saw mine last night at the exact moment my son’s angry outburst turned into a full-fledged meltdown.

I literally saw the point of no return. It was a flash before my eyes when I was trying to calm down Grumpy Badger. Why? All because he didn’t want to blow his nose.

It always starts off innocuously enough. I heard him sniffling. Granted, we’ve had a little runny nose thing in our house for the past few days. Unlike the rest of the country who is under snow and ice right now, we’ve been seeing some beautifully mild weather here. I actually have crocuses blooming and bulbs popping up in my yard. So, it’s easy to guess that a drippy nose could be caused by our spring-like weather. No biggie.

Well, the King of Perseveration himself, Monkey, took a runny nose as a great way to develop a new talent. Obsessively sniffling. We’re not talking the odd sniff here and there. No, it’s almost as if he’s been watching Mary Katherine Gallagher on Saturday Night Live. Remember her? She was Molly Shannon’s character that would sniff her fingers after they’d been in her armpits. “Superstar!” I digress... Well, Monkey’s been sniffling kind of like that. Without the armpits. And, without the fingers. Just with his nose. Loudly. My guess is that it gives him some good sensory input and so he keeps doing it. And doing it.

Grumpy Badger, the King of Echolalia, has been listening to Monkey sniffle. As you can probably guess, he’s now copying the behavior. Both of them are doing it often enough that they have effectively formed a new, loads-of-fun-for-me-to-break-later habit!

So, I’m “helping” Grumpy Badger get ready for bed because he was showing signs of being uncooperative. While in the midst of getting changed, he sniffed loudly right next to me. I heard the congestion in his nose and left to get a tissue. Knowing that I didn’t want him going to bed with a full nose of gook, I asked him to stop sniffing the stuff back up into his nose and try blowing it out into a tissue. He refused and whipped his head away from me. I talked with him a little bit about how the stuff in his nose can make him sick if he doesn’t get it out, and tried again to get him to use a tissue. He sniffed in protest and I saw his face scrunch up with an angry scowl.

That’s when it happened. I swear I saw a green flash! I knew the simple act of requesting him to blow his nose in the middle of his nighttime routine had just turned into a battle that I didn’t want to wage. I settled into a position seated on his bedroom floor because I knew that the faster I helped him resolve his meltdown, the faster he would get to bed. As I sat there, I quietly spoke to him about calming down. When he started lashing out physically, I scooped him into an intense bear hug. His body needed the pressure to help de-escalate his mood. All told, I think the meltdown lasted around 15 minutes.

After the drama had subsided, I was able to talk with him. He was ready to engage in the conversation and not shut down. Apparently after getting all of that energy out of his system, his body was finally ready to cooperate, which meant his mind could then follow suit. And you know what? He laid his head down onto his pillow with a huge smile, AFTER blowing his nose into a tissue.   

  

Digging myself out

Is there something in your life that you’ve neglected? Are you overwhelmed just thinking about it? My answer is “yes” on both counts. This pit of neglect is my office. You take your life into your own hands when you open the door. How do I go about dealing with this? A machete? Napalm, perhaps?

I really hate to admit this because it sounds awful, but my office has been slowly accumulating stuff for about, oh, 3 years now. Yes, I said years. How is this possible, particularly when I am one of the most organized people around? I can get downright anal-retentive about things! When I had a paying job, my desk was always the most organized in the entire place. My house is fairly nice and well-kept. My kitchen junk drawer is organized. Weird, right? 

Well, I’d love to have a functional office that doesn’t scare me when I open the door. It’s completely out of control. If I have to do acrobatics just to get to the bookcase, then there’s a problem. I realize that it’s time to deal with it and dig myself out of the pit. How? Well, I’ve thought it through and think I have some answers.

Are there areas of your life that need some help, too? Well, then come along with me and try the following steps. Maybe you can also dig yourself out.