Thursday, April 28, 2011

Welcome to Holland. Or is it Beirut?

Lots of families look for a way to describe and understand their feelings after they receive a diagnosis and learn that they will be raising a child with autism. Thankfully, there are some essays out there that are widely shared and might help you sort out your thoughts and recognize that you are not alone in this path. “Welcome to Holland,” is very well-known in the autism community as an expression of coping with a special needs diagnosis. A more recent essay, “Welcome to Beirut,” gives an entirely different perspective on being a parent to a child with autism. I will attempt to paraphrase each of them and then also share a couple of new ones I found.
Let’s start with the most popular, “Welcome to Holland.” It was intended to discuss the experience of raising a child with Down syndrome. In recent years it has become associated with autism. To view the original essay in its entirety, click here. This is my attempt at an overview:
You have been planning a dream vacation to Italy. In preparation for your trip you have purchased guide books, you have been learning the language, and you have dreamt of all the fascinating places you will visit while you are there. The day arrives and you get on the plane. When you arrive at your destination the flight attendant says, “Welcome to Holland.” You are confused and upset. You will not be going to Italy after all. So, you get some new guide books and do the best that you can. Although it is not what you had hoped for, you also find there are many wonderful things about Holland.     
Honestly, I think it’s beautiful. It’s very simple and nice. But autism is not always nice. It can be very ugly. A majority of autism parents I know (including myself) refer to themselves as warriors at some point or another. It’s a fitting term for what we have to do to help our children. Thus, a new essay was written called, “Welcome to Beirut.” It talks about the ugly that isn’t always visible to others. For the full version of the essay, click here. Here is my short take on it:
Starting with the diagnosis of autism, it feels like someone has thrown a bag over your head and kidnapped you, taking you to the middle of war zone. You are terrified and have no idea what will happen to you. You find yourself in Beirut, a place you’ve never been. You are unable to speak the language and don’t know what to do next. As you exist in your new world you find yourself coping, but then suddenly things can change and you could easily be wounded from a stray bullet. There are always quiet moments in war when things feel somewhat peaceful, and you make the best of those times because you know the war could flare back up at any moment.
I think this version is accurate to what many people feel as they try to navigate the world of autism. Getting the proper medical, therapeutic, and educational interventions can be a constant, exhausting battle. If you feel somewhere in-between a battle field and the land of tulips, then you might appreciate “Holland Schmolland.” You can read it here. This is my version:
Schmolland is a place that is a bit different. In Schmolland it is customary to do things like: line up your toys, repeat lines from a video, or bounce endlessly on the couch. The citizens of Schmolland struggle to mimic the customs of people from other countries and many cultural misunderstandings occur. One thing is certain - the population of Schmolland continues to grow.
This one demonstrates that autism families and children are truly different and I like that it makes a cultural distinction. Despite the very hard work our kids do to fit in elsewhere, they ultimately find comfort living in a land where it’s okay to have their own customs. If you want to take the idea of Schmolland a step further, then you will arrive in the subarctic region of Canada. “Welcome to Yellowknife” is a very interesting read and you can view it here. This is my synopsis:
Your family lives in San Francisco and finds themselves suddenly relocating to the cold, subarctic climate of Yellowknife. To survive, you have to be prepared. It’s isolated, challenging, and very expensive to live there. Yellowknife is a land full of strong people and those who arrive may not always stay or wish to be there. Yellowknife families might try to move closer to the US to be more comfortable, but it’s still obvious they are different. Some families are able to move back to California in time, but they might not ever live in San Francisco again. For those who stay in Yellowknife, they learn how to live there and enjoy it, despite the hardships.     
Each of these views on living with an autism diagnosis is great in its own way. I enjoy seeing the different perspectives and truly have a level of understanding with each of them. Which one is your favorite?

April is Autism Awareness Month! A group of mommy bloggers have joined together to help spread the word about autism. Please visit these wonderful blogs!
Join us, won’t you?

Wednesday, April 27, 2011

Wordless Wednesday: Arf!

Monkey was in a play last night and his part was Connor, the Irish Setter. This picture was taken just a few minutes before the show started. He only had one line to speak into the microphone, but he had the entire play memorized (I saw him mouthing the words for every line of the entire play). Now that is the perfect use for memorized scripting!

There were a few moments in the play where the music really got going, and I gotta tell ya, Monkey busted a serious move with the choreographed motions to the music. He did an awesome job and he looked like he had a blast!

But, the funniest part was when my husband (the family videographer) leaned over and whispered to me, "This is something he will love watching when he's older!" Teehee.  

April is Autism Awareness Month! A group of mommy bloggers have joined together to help spread the word about autism. Please visit these wonderful blogs!
Join us, won’t you?

Tuesday, April 26, 2011

Recharging the batteries

Did you know that mommies have batteries? They do! Not that long ago, I told you about a fat lip that I got from Prince Charming when I tried to steal a hug from him. (I still have a little bump leftover from that lovely incident, by the way…) Anyway, I am usually chopped liver when daddy is in the house. The kids will climb all over him and cuddle in his lap until he falls into a kids-make-me-feel-warm-and-cozy-and-sleepy coma in his big recliner.
I came up with a fun little idea that has been helping me get a little bit more affection from my kids, and thankfully daddy is helping in the pursuit of mommy cuddles. Want to know how I have been coercing lovingly suggesting that my kids give me hugs? Cue the batteries! The initial conversation went something a little like this:
Me: Did you know that mommies have batteries?
Boys: No.
They do! Want to know how they get recharged?
What? What are you talking about?
Well, I have batteries inside me that run out of power and sometimes they need to get recharged. Want to know how they get full of power again?
Boys: How?
Hugs! When I get a hug from my boys, my mommy batteries get recharged. Mommy needs lots of hugs to get through the day. When I’m running low on power, I need your help to charge my batteries.
What? You’re silly, mommy!
I know, but it’s true. My…hug…battery… Oh, no! I think it’s…getting…low. (and I slowly stop moving)
(staring with huge grins on their faces, waiting for me to move)
Boys! You need to help mommy recharge her hug batteries! Hurry, hurry!
Okay! (they run up to me and throw themselves on me almost knocking me to the floor)
Me: Oh boy! I feel so much better! I think that charge will last me a while. Thank you for helping me fix my batteries!

More often than not, when I ask the boys for a hug they might look at me, smile, and then run over to daddy and hop in his lap. He’s watching this happen and sees my smile, but knows I could really use the hug. Since my invention of mommy batteries, I might hear him help me out by asking the boys if they think my batteries are low. Sometimes they respond and immediately run over. If they don’t or kind of playfully laugh it off, then he might suggest that they go recharge my hug batteries before they are allowed to cuddle with him.
I love him for that.  

April is Autism Awareness Month!
A group of mommy bloggers have joined together to help spread the word about autism. Please visit these wonderful blogs!
Join us, won’t you?

Monday, April 25, 2011

Celebrating Easter with autism

Easter has always been a big deal in my family. Both my husband and I come from church-going families, and I also had 2 grandparents involved in full-time ministry for over 60 years. Things got a lot more complicated with attending church after my husband and I had 2 boys with autism. This is especially true on Easter Sunday when you typically have to park really far away, the building is packed with people, Sunday school classes are stuffed to the gills, and the whole place reeks of Easter lilies. Talk about overload. Church is hard enough for the boys on a typical Sunday.
For the past few years we have made the decision to skip church on Easter. It hasn’t been worth the additional stress that we all feel trying to navigate the hectic and overwhelming day. We had actually stopped going to church entirely for a time when we were thick in the throes of autism-related meltdowns. But, thankfully we are now able to attend church on a fairly regular basis. As time goes on my boys are better able to manage sensory input and transitions. I feel confident that we’ll be able to begin attending Easter Sunday services again in the not-too-distant future.
Since we didn’t go to church for Easter, we celebrated in our own way. We’ve shared the Easter story with the boys before, but they never seem to retain it. Despite our very simple explanations of the life and death of Jesus, we have doubted their understanding. Knowing that they have a visual memory, we decided to try a child-friendly video story of Easter this year. We thought it would be the perfect way for them to “see” the story of Jesus and then hopefully move the information into their memory.
After spending some time searching online for children’s videos that explained the Easter story, we found a few that were okay but didn’t fully convey the information in the way we had hoped. Then, we found a video posted on YouTube from “Zondervancom,” which I could only imagine was from the huge publishing company Zondervan. So, we clicked on it and found a 3-minute video that was created with kids in mind. It had nicely animated graphics and went through the story of Jesus beginning just before his arrest and concluding after he rose from the dead. My husband and I liked this version well enough to show it to the boys. We chose to have them watch the video prior to any other sort of Easter festivities so that they would be as focused as possible.
They watched the entire thing without hesitation or disruption. After viewing the video, we talked about it as a family. Surprisingly, both of the boys understood the story and could, in their own way, explain the main points of what happened when we questioned them about it. We spent some time going over the details of the story and felt confident that they actually did have some understanding of the importance of Easter. I feel that this was a great outcome for our personal celebration of Easter this year. I can only hope that next year is even better.
Here is the video we found and shared with our boys.

Do you have a child with autism or sensory issues that makes attending church difficult? How do you deal with concepts related to faith and religion?
Join us, won’t you?

Thursday, April 21, 2011

Going gluten-free: Guest post at BoysRising

Guess what? I’m guest posting over at BoysRising today!  The gal behind the blog, Autherine, was nice enough to give me a chance to write my very first guest post. Needless to say, I'm really excited! 
In honor of Autism Awareness Month, I was asked to address something of importance to families who have children with autism that would also be of benefit to the BoysRising audience. Well, one of the most important things our family has done in our journey with autism was change to a restricted diet. And, over the past 2-and-a-half years of running a support group I have found consistently that one of the topics of most interest to special needs families is how to start a gluten-free diet, or go GFCF (gluten-free, casein-free) or even GFCFSF (gluten-free, casein-free, soy-free).
Since the readers at BoysRising appreciate insight on raising boys and making healthy (and mostly vegan) choices, I thought the gluten-free diet was a perfect topic. I hope you will agree. Going gluten-free can have many health benefits, up to and including treating the symptoms of autism. Now, head over to BoysRising and read, “Going gluten-free for your health” to see what I’m talking about! Enjoy!        

April is Autism Awareness Month! A group of mommy bloggers have joined together to help spread the word about autism. Please visit these wonderful blogs!
Join us, won’t you?

Wednesday, April 20, 2011

Wordless Wednesday: Laundry style

Here is Monkey "helping" me with the laundry. He thought this would be a fun way to pull  laundry out of the dryer.

Happy Wednesday!

April is Autism Awareness Month! A group of mommy bloggers have joined together to help spread the word about autism. Please visit these wonderful blogs!
Join us, won’t you?

Tuesday, April 19, 2011

Pink Panther to the rescue

At the suggestion of one of my autism mommy friends, I decided to check out Pink Panther cartoon episodes for my kids. I remember watching Pink Panther as a kid, but it never really held a lot of fascination for me. However, I do distinctly remember the theme song! You remember it too, right? I think you would have had to be living under a rock if you didn’t have that song permanently ingrained in your brain. I used to love the mellow tones of the saxophone and the jazzy lilt to the music that ran through the episodes.
Well, I was complaining chatting about the latest cartoon my kids were perseverating on. She understood completely. Echolalia can take over our home with the latest brand of cartoon fascination. It can become consuming and after a while I can get downright annoyed. In February I wrote, “Chaaarge! Retreat!” about how my boys were reliving an episode of Bugs Bunny over and over again. It’s cute to think about them playing nicely together (for once!) and acting out the parts, but when you’ve seen and heard it a zillion times in a row it ceases to possess the same level of cuteness.
In case you don’t know or haven’t yet figured it out, echolalia is when a child repeats or echoes back something that is said. When they do it for an extended dialog, like memorizing all the lines from their favorite show, it's called scripting. Then, you add in perseverative behavior (an obsessive interest in something; in this case, repeating something over and over) and it feels like it’s frying my brain one cell at a time. They love it.    
I’ve heard practically every single cartoon I’ve ever seen with my children repeated back to me in some fashion. Often they are able to pull phrases and words from various shows they’ve seen and string parts of them all together to form an in-context conversation. Most people who don’t really know my boys may have no idea whatsoever that the words they speak may not even be their own. It’s a finely crafted facsimile of a conversation and it’s an astonishing feat when you think about it. I could never do that in a million years! The way my boys can categorize and memorize information is beyond my comprehension, and is most certainly one of the gifts that comes with their particular brand of autism.
Anyway, my friend reminded me how perfect Pink Panther would be for my kids. There is almost no dialog! (Insert singing choir of angels here...) They would only be watching it for the musical and comedic value and I likely wouldn’t want to strangle them afterward. Yes! This was something I could get behind! I discovered that picked up some of the old episodes and made them available on their site for free online viewing. Since we no longer have cable television, it was perfect for us. And, the best part is, the kids love watching it. It’s a win-win!

Pink Panther, thanks for your jazzy tunes, funny style, and for being quietly cool. You may have saved my sanity. Well, at least for a little while.
April is Autism Awareness Month! A group of mommy bloggers have joined together to help spread the word about autism. Please visit these wonderful blogs!
Join us, won’t you?

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