Every day is autism awareness day

April was Autism Awareness Month. You may have noticed the list of blogs I had at the bottom of each post this past month. I had the privilege to share my blog with some great mommies for the entire month in order to draw attention to autism. I hope you had a chance to hop around and visit some of those blogs.

Now that it’s May, Autism Awareness Month is officially over. But, that doesn’t mean that autism awareness just hides in a dark drawer somewhere until next year. There are MANY families like mine that recognize autism awareness every single day of our existence.

Please do not forget about us.

On behalf of all of these families, including my own, here are some things I’d like you to know:

Some days we learn a lot from autism.

Some days we feel completely ill-equipped to handle autism.

Some days we despise autism with every cell in our body.

Some days we appreciate a new perspective given to us courtesy of autism.

Nonetheless, families like mine are here. Fighting. Hard. There are lots of us, and our numbers increase every day.  

We are exhausted.

We are broke.  

We agonize about the future.

We just want to make it through each day without incident.

We wonder what our child’s experience of life is like.

We struggle.

We celebrate each success.

We wish we understood our children more.

We love our kids.

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!

Organizing Made Fun
Earth Monkey Moms
A Bowl Full of Lemons
Goodbye House, Hello Home
Pieces of My Heart

Caffeinated Autism Mom
Mom's Flight School
Helping My Boys
My Thirty One
Life with Lissy
Frou Frou Britches
This Journey Through My Life
Endless Crafting
Loving This Life with 5
Snails & Puppy Dog Tails
Me, You, Wine, Cheesecake, and Autism
Organizing Amid Chaos
The Five Days

Join us, won’t you?

  

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!

Organizing Made Fun
Earth Monkey Moms
A Bowl Full of Lemons
Goodbye House, Hello Home
Pieces of My Heart

Caffeinated Autism Mom
Mom's Flight School
Helping My Boys
My Thirty One
Life with Lissy
Frou Frou Britches
This Journey Through My Life
Endless Crafting
Loving This Life with 5
Snails & Puppy Dog Tails
Me, You, Wine, Cheesecake, and Autism
Organizing Amid Chaos
The Five Days

Join us, won’t you?

  

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.
Me: They do! Want to know how they get recharged?
Boys: What? What are you talking about?
Me: 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?
Me: 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.
Boys: What? You’re silly, mommy!
Me: I know, but it’s true. My…hug…battery… Oh, no! I think it’s…getting…low. (and I slowly stop moving)
Boys: (staring with huge grins on their faces, waiting for me to move)
Titan: Boys! You need to help mommy recharge her hug batteries! Hurry, hurry!
Boys: 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!

Organizing Made Fun
Earth Monkey Moms
A Bowl Full of Lemons
Goodbye House, Hello Home
Pieces of My Heart

Caffeinated Autism Mom
Mom's Flight School
Helping My Boys
My Thirty One
Life with Lissy
Frou Frou Britches
This Journey Through My Life
Endless Crafting
Loving This Life with 5
Snails & Puppy Dog Tails
Me, You, Wine, Cheesecake, and Autism
Organizing Amid Chaos
The Five Days

Join us, won’t you?

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?

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!

Organizing Made Fun
Earth Monkey Moms
A Bowl Full of Lemons
Goodbye House, Hello Home
Pieces of My Heart
Caffeinated Autism Mom
Mom's Flight School
Helping My Boys
My Thirty One
Life with Lissy
Frou Frou Britches
This Journey Through My Life
Endless Crafting
Loving This Life with 5
Snails & Puppy Dog Tails
Me, You, Wine, Cheesecake, and Autism
Organizing Amid Chaos
The Five Days

Join us, won’t you?