I find it a bit embarrassing that I haven’t posted since October. In the least, life has been crazy – crazy good, crazy bad, and crazy everything in-between…

I find myself wanting to post today since it is World Autism Awareness Day (WAAD). There is so much to tell…

…sigh…

…I could tell you how this winter has been SO INCREDIBLY hard on Christian. And how he has started to loathe the snow. And how I can’t blame him as I am super sick of it, too, but, seriously, every time it has snowed (or even thought about snowing) since January, he has broken down into tears. And how he then insists on going outside and shoveling the snow to look for the grass. And how I know,¬†That’s SO cute! And how, it is. And that I’m so thankful that he has the words this year to tell us why he is so upset, but that being jumped on at 2 in the morning because it started snowing and we have to go ‘shovel the yard’ gets kind of tiring after awhile. ‘Good-bye Snow! Hello Grass!!!’ Please tell me that this will be a reality soon! #AutismAwareness

…I could tell you how about a month, no, maybe two months ago! we transitioned from the ‘child training room’ at church into the actual sanctuary! ūüôā And how we were thrilled and excited beyond words! And we forced ourselves to somewhat contain our excitement for a couple of weeks not wanting to ‘get our hopes up’. And Christian was participating (more than he ever had before). Pixar was behaving. Olivia was so happy to be actually sitting ‘in church’. Everything was amazing! ūüėÄ And then all of the sudden it wasn’t. And we were forced to carry him out while he kicked and screamed and cried about ‘Go Home NOW!!!’ And how we have tried for three services now to get there with him (dressed). And how that hasn’t worked. And how I’m praying that this weekend will be different. That everything will be fine again and that I’ll force myself to contain my excitement again so that I won’t ‘get my hopes up’. #AutismAwareness

…I could tell you about¬†my trip with Christian to the store this afternoon. And how we were just returning Olivia’s ‘Redbox’ movies and getting a donut (it’s Spring Break). ¬†And then how the ‘sky started falling’ because movie display area is moved from where it is¬†‘supposed’¬†to be. And how I tried to calm him and keep him safe, but that wasn’t working at all. And how I just wanted to curl up on the floor with him and scream & cry, but didn’t. And how we drew a crowd of onlookers. And how much I appreciated the two people who did stop to ask if they could help. And how I knew they really meant it and weren’t just pitying us, but I wasn’t actually sure what they could do to help. #AutismAwareness

…sigh…

…I have so much more that I could tell you — medication changes, bus issues, emergency school meetings, sibling issues, sleep issues, etc. — someday I hope to get these things chronicled here. Until then we will just continue in this crazy good, crazy bad, and crazy everything in-between life. And I will be praying for peace on this crazy journey. #AutismAwareness

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Be strong and courageous. Do not be terrified; do not be discouraged, for the LORD your God will be with you wherever you go. [Joshua 1:9]

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I’ve been in training for a half-marathon. Here’s the post I shared on my running blog…

Challenge.

Sigh. I’ve waited to post this (and actually wondered if I ever would) because it gets my emotions so raw. Let me start at the beginning…
Brian and I decided that it would be a good idea to put both kids in swimming lessons this spring. Liv has never taken “formal” lessons. Christian took “special needs” lessons last winter. Christian enjoyed the water, however, Brian and I were concerned that they didn’t focus enough on swimming skills vs. the-love-of-water. Christian has never had a problem with the latter. We really wanted him to learn some basic water survival skills.
About a month before the classes were set to start (and we were ready to register), I tried emailing the aquatics director to see if it was feasible for Christian to partake in “regular” lessons. I waited and waited. A week passed and I hadn’t heard from her, so I stopped into her office to talk with her directly.
She didn’t seem too concerned about anything that I wanted to tell her about Christian. She just asked (more than once) if Christian was OK without me in the water with him.
Well, yes, he is OK without me.
Her answer to me then was to enroll him in whatever class I wanted to. She didn’t seem to have time or attention to listen to any of my other concerns, so I left her office and signed him up for “regular” class at the same time as Olivia. Easier for me. Awesome.
…or so I thought…
I arrived with the kids on the first night of class. Both were excited and couldn’t wait to get into the water. When all of the children were divided into smaller groups, I could sense a rumble of concern about Christian from the instructors. They were nervous about him. One of them went and asked the aquatics director if she was “OK with him being here.” Her reply was, “If he’s OK without Mom in the pool, then I’m fine with him being here.”
I started to get nervous and anxious about my son being referred to as him. I was starting to get irked, but tried to stay calm and positive for Christian.
I backed out through the door and watched carefully. As I stood there I was horrified, crushed, and angry as one of the instructors (right in front of Christian), started tearing up and shaking. As I tried to read her lips, I could see that she was saying, “I can’t handle this! I don’t know how to teach him! I can’t do this!” She was panicking, shaking her hands, and looking at him like he was the plague! I wanted to run out there, grab Christian out of the water, and shield him from her reaction.
Eventually, the aquatic director came out and talked to the teary-eyed instructor, went and talked to one of the other lifeguards, and then headed my direction. Sigh.
Aquatic director walked right over to me, and in front of all of the other parents, started telling me that Christian could not be in these¬†classes. She told me that he is not capable and that thankfully they were overstaffed¬†on lifeguards that night so one of them could spend time with Christian for the rest of the allotted¬†class time. She told me that I would have to enroll him in the “special needs” classes if I wanted him to continue lessons and that she supposed that she could “roll him over” into the special class that started in two days. She made this sound like she was doing me this huge favor. Sigh.
Had it not been such a long day by that point, I might have been more vocal with the aquatic director. However, as I watched my beautiful boy now happily splashing around with extra lifeguard, I just nodded and told her that I would like to continue the lessons and to go ahead and put my baby in the other class.
I’m sure that¬†aquatic director¬†said some more things to me, but I was done listening. I was too busy watching Christian and fighting back my own tears. I was lost in thought wondering whether Christian had heard and how much he understood about what the swim instructor had said about him at the beginning of the class.
As soon¬†as aquatic director walked away, I could no longer hold myself together. I started¬†bawling, uncontrollably, by that window, in front of the¬†other parents. I tried to stop. I¬†really did. But I just couldn’t. There were too many emotions washing over me all at once. ¬†I donned as brave face as best as I could and attempted to pull myself back together by the end of the class.
Two days later, Christian started lessons in the special needs swim class again.
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Three weeks passed and my emotions were not as raw as they had been. The kids are thriving in their swim classes. I made an appointment to talk to the CEO of the place where the kids were taking their classes. He agreed to meet with me the next day.
I recounted our story. He listened to my every word. He asked questioned and repeated me, just to make sure that he fully understood what I had said. He promised to use it as a “teaching moment” and asked that I let him know how the swimming class turned out in the end.
I was satisfied.
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Swimming lessons have now come to a close.
Olivia did fantastically well and loved every minute of her class.
And Christian … well, Christian did great. He also had the most excellent of teachers, Mr. Tim. Mr. Tim was genuinely happy to see Christian every week. Mr. Tim was energetic, caring, and resourceful. He got Christian to try things that I wasn’t sure I would ever see him do – like¬†putting his head¬†underwater to grab a ring off of the bottom of the pool! I know! Awesome, right?!? Mr. Tim had him working on paddling with his arms. Once Christian could do that pretty well, Mr. Tim had Christian start working on his kick. Christian still may be a long way from swimming on his own, but he is now on his way thanks to the patience and understanding of Mr. Tim.
I wish that there were more Mr. Tim s in this world…

As I’ve mentioned before, April is Autism Awareness month. I have lots of ideas for blog posts running through my head, but haven’t quite had enough time to sit down at the computer and get them out. Sigh.

In leu of my own post, I thought that I’d share this great blog post that was¬†being passed¬†around Facebook yesterday in case you didn’t see it. It comes from “Autism Island” and is called “50 Things You SHOULD Say To Autism Parents.” Please click this link and check it out.

Dear Store Clerk–

I understand that you only spend a limited amount of time with each customer that comes through your lane. You probably have to make some snap judgements just to spark conversation with those in your line. But please understand that sometimes you may judge too quickly.

You see, I was the Mom in your checkout lane this morning. Yeah, the one with the child sitting in the cart, even though he seems way¬†too big to be in there. The child who was “happy screaming” (a.k.a. vocal stimming) quite loudly. I was the Mom with bags under her eyes from years of sleepless nights.¬†The Mom who was very aware that I only had a limited amount of time in your store because of the lighting, sounds, and smells.

You saw me and my boy, the one with the iPad, and chose to say, “Wow! Someone sure is spoiled.” Then you shot me what appeared to be a disapproving glance, like if he was your child there is NO WAY you would let him have something like that. Part of me wanted to cry. Part of me wanted to punch you in the face.

You see, I spent countless hours writing grants to get my son his iPad. Not for the games or videos or music. Not so he could look cool to his peers. I wanted this device for him so that he could communicate with me, my family, and his teachers. I longed to know his thoughts. I longed to give him something portable enough to take with him and ease his anxiety when we are away from the familiar.

My beautiful son has autism. Verbal communication is extremely difficult for him, but he can type. And I am forever thankful for that treasured communication link. His iPad has opened a world between us that was closed before.

Guess what I’m trying to say is that before you deem a child “spoiled” for having a piece of technological equipment, take a second look. Look at that parent — she is wearing an autism lapel pin.¬†Look at that child —¬†he is working so hard to not lose it in your store.¬†We are just people trying to get through our day and we could use your support instead of your disapproval.

my autism lapel pin

It is World Autism Awareness Day. Autism is thrust into the spotlight and buildings, monuments, businesses, universities, and homes around the world light up blue for the day. It seems especially significant this year as the CDC released new prevalence numbers last week now saying that 1 in 88 children (1 in 54 boys, 1 in 252 girls) will be diagnosed with autism. The numbers are staggering. They remind me of why educating others about autism is so important.

I have felt like I am at a loss for words about our journey lately. So much has happened. We have reached some joyous highs — like a field trip in which spaghetti was eaten and actually enjoyed!!! ūüėÄ — to some of the lowest of lows — headbutting teachers at school and needing to be removed from the classroom with tears that just never seem to end ūüė¶ . We have had to adjust medications that no 7-year-old should have to take. I have had to have meetings with heads-of-companies about mistreatment of individuals (and parents) with autism. We have spent too many nights up at 2 or 3 am because sleep will no longer happen for our beautiful son. All of this happening since January. I know that I have felt overwhelmed and exhausted in every way possible. I can’t even begin to imagine how my dear boy has felt through all of this.

Our 1 in 88 (1 in 54).

Our 1 in 88 (1 in 54).

But Christian doesn’t give up. He powers on and inspires those around him. His braveness has encouraged me on this journey and looking back I wouldn’t ask to be on any other path or I would have missed out on all of these unexpected lessons that I have learned along the way. And I am thankful for God’s goodness¬†(Jeremiah 29:11) — “For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.”

We have also been blessed to have our beautiful Olivia. Christian’s “big” little sister. She is his advocate and friend and loves him without condition. She “wore it up blue” in honor of her brother today. I am so proud of the great sister that she is…

Olivia wears it up blue for World Autism Awareness Day.

Just know that each person’s/family’s journey with autism will be different. We are all on a rollercoaster ride of highs and lows. Some of us will want help and some¬†will want to go it alone. Some of us are willing to share our stories and some will just not be ready to let others into our realities. But we are all here. We are your family, friends, neighbors, members, customers, etc.

To read some other great posts about World Autism Awareness Day, please click here to visit Jess at Diary of a Mom and click here to visit Jeneil at Rhema’s Hope.

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For those of you who have wondered where I’ve disappeared to, feel free to visit my running blog http://2012myyearontherun.wordpress.com