Somehow time has flown.

All of the sudden we have shimmied from April right through summer and into the start of another school year.

There was so much that I had wished to chronicle here, but … yeah.

Let’s just say that these months have been a journey…

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… during this time we have experienced awesome accomplishments and stared some huge fears in the face. There have been tweaks, tantrums, and tears. There have been sighs, snickers, and great rejoicing.

Through the good, the bad, and the ugly, it is amazing to see how far we have come, as individuals AND as a family.

We have walked, crawled, and sprinted along the way. Sometimes together. Sometimes on our own. But always with God at our side.

And as I hope to return here again to write soon, I just want to leave the verse that I have been clinging to on this journey… “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.” ~Jeremiah 29:11

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…

Christian had Spring Break this week. Being out of routine is not necessarily easy for anyone, but it can be especially difficult for those on the autism spectrum. We have had our share of difficult “vacations” in the past. Many have consisted of screaming, endless crying, and major “tantrums” about not being able to be at school. It becomes an extraordinarily hard time for EVERYONE in the house. I’d be lying if I said that I wasn’t concerned how we would handle this long week that laid bare in front of us.

But this week, this week of Spring Break, an entire week with NO school, turned out so different from all of our breaks in the past. I think that it is safe to say that this has been the best break from school that Christian has ever had! No joke!

Here are some things that I have learned during this week…

  • We can survive and thrive during a break. Whew! This makes the thought of summer vacation not quite so scary a thought anymore.
  • There is a Catch-22 to Christian sleeping later into the morning. I have learned this week that if he sleeps past 6am, I will probably end up washing any and everything that was on his bed. As much as I like being able to “sleep-in”, I would prefer to see my boy by 5am.
  • With the help of two of his therapists, Christian learned that being at the Children’s Museum in town with me and Liv is OK. We can have fun together as a family while there. My heart smiles.
  • Christian can walk his service dog, Pixar, really excellently by himself (if he has her on a hands-free leash), as long as I’m not around. Pixar has become too reliant on me. I have to distance myself from her so that she can lean on Christian more.
  • An obsession focus on WordWorld combining with Legos makes for some interesting days. I think I need a Lego intern to move in with us for awhile. (See pictures of our creations at the bottom of this post.)
  • Christian knows his bedtime prayer. He wandered into Olivia’s room when I was putting her to bed last night and started praying along. I was near tears of joy. 🙂
  • Christian spontaneously told Brian that he loves him a few days ago. I melted. Such fantastic words to hear, especially when offered so freely.
  • Christian and I can do a HUGE grocery shopping trip by ourselves with the help of a cart called the “Shop Along.” These carts have a bench seat behind the actual cart. Christian sat awesomely on the bench while I overfilled our cart. 🙂 (I have also learned that pushing an 80+ lb. child in a Shop Along with it overflowing should be considered an Olympic sport. I’m only half kidding. 😉 )
  • Christian is a technology master. One example of that this week — he found a word processing program on Grandma’s computer that she didn’t even know that she had. (He found it so that he could type credits at her house, of course.) He has also been using our “Movie Maker” program to create his own scrolling credits and inserting pictures that are saved on the computer. He can just about type as fast as I can. Incredible! 😀

Our favorite -- "DOG"

Our Cast of WordWorld friends -- "DOG", "FROG", "PIG", and "SHEEP" (We added "DUCK" a little bit later. He hasn't made the leap from the camera to the computer yet. 😉 )

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!!! 😀 — 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 😦 . 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

To others, what Christian accomplished this morning might seem minor, but I can promise you that it was/is a HUGE deal.

Christian doesn’t have school today, but Olivia does so Christian had to accompany me to drop her off this morning.

I had decided a couple of days ago that I would try Friday morning chapel with Christian while there. Sitting in the church proper. (Something that we haven’t attempted in years because of meltdowns that occurred just even walking through the door.)

We arrived early, before any of the students entered, just to adjust to the space. (And forgoing a big dramatic scene just in case this idea didn’t fly.) Christian tested the acoustics. (They are fantastic.) He decided that it was too much to sit in the pews, so we grabbed a row of usher seats along the back wall. (The seats are the same as what we sit on weekly in the Child Training Room.) Christian got comfortable and Pixar found a spot on the floor and we waited patiently for the school students to file in.

I was having a hard time thinking of a way to explain to Christian why we were sitting in church and waiting. What were we waiting for? He had no concept of “chapel”. Hmm… It was Christian who finally said, “And Nick and Jr will have devotion.” Yes, Christian. We are staying here for a devotion. His reply, “OK.” 🙂

I can’t say that we were completely undistracting during chapel. I mean, we had a dog. In church. That doesn’t happen everyday. And I tried my best to keep the shouts of “Jeopardy” “Alex Trebec” “Executive Producer: Josh Selig” etc. under control, but they did slip out on occasion.

Through it all, I thought that Christian did great job. He happily put an offering in the basket. He prayed The Lord’s Prayer with the rest of us. He moved his body to the hymns as we sang. He did not meltdown, cry, kick, or scream. He seemed truly happy to be there. I was/am SO proud of him and am thanking the Lord for yet another humble reminder of how important it is to make sure that all of our kids hear the Word no matter how difficult it can seem to make that happen.

Here are a couple of notes that came home with Christian today…

Christian shocked Mr. G (the principal) this morning by stopping him in the hallway, giving him great eye contact, and initiating a greeting!!! 🙂

He also initiated a great conversation about my dog, who he heard me say had hurt his leg.

Good Day!!! 🙂

I’m always so excited to get great reports like this from school, but even more thrilled that it contained smily faces. Especially since it has been a rough couple of weeks!

Yesterday, it almost passed without being noticed. It’s honestly amazing that I almost made it through an entire January 19th without thinking about the day that changed my life’s perspective. Yesterday is our “A-Day” anniversary. A-Day = autism diagnosis day. It has been six years. I still can’t believe that S.I.X. years have already flown by. Oh, and how my perspective has changed with time and experience.

I have reflected on our A-Day in the past. (Click here to review our 4 year anniversary and here to review our 5 year.) This year, I think that I’ll recount some things that I’ve learned along the way.

  1. In the world of autism parents, there are two real and very distinct polarizing views. Those who believe that there is a “cure” for autism and those that think that the “cure autism” parents have fallen into the trance of a cult. I am neither.
  2. We have tried biomedical intervention and have seen some improvements, but not enough to continue to pursue those ideas.
  3. I did really hope (at the beginning) that Christian would be “cured” because his autism was the regressive type. I no longer want or need that for Christian.
  4. Just because we no longer are looking for a “cure” doesn’t mean that we don’t want what is best for our son. We still spend countless hours with therapy and reading, researching, and trying new ideas.
  5. Some of these ideas work wonders. Some don’t work at all. Some make things worse. Some make life a little bit easier. Some only last awhile. Some forever change our lives. We never know before we start which of these scenarios we will face.
  6. A gluten and casein-free diet was a godsend for Christian for over 5-1/2 years. This summer we slowly started re-introducing these banned foods. Christian can tolerate most now. We are thankful that he is starting to take an interest in what we, as the rest of the family, are eating. He is now trying new foods without behavioral consequence. I am overwhelmedly relieved.
  7. Some times you do need to use medication that you really wish you didn’t have to give your seven-year-old. Finding the right one at the right dosage can really turn a downward spiral into an upward one.
  8. Dogs are amazing. Watching Christian learn to be a friend warms my heart. I love the smile on his face the moment that he sees his Pixar. It is priceless.
  9. Technology is fantastic. It has given my formerly non-verbal son the gift of a voice before he had the verbal words to use. I am forever grateful. It is a window into the inner workings of his mind.
  10. The love that others (therapists, teachers, bus drivers, neighbors, friends, volunteers, strangers, etc.) show my son will always make me teary-eyed. I will cry later when I think back on it when no one else is around.
  11. Olivia is a great little (big) sister.
  12. I can be a “Mama Bear” if I have to be. Watch out.
  13. I do need to take care of my health. It is just as important as everyone else’s.
  14. Sleep is precious. Yes, the name of this blog is still applicable. 😉
  15. The one and only thing that has held our family together over the last 6 years has been God. He has been our glue when we would have fallen apart physically, mentally, spiritually, emotionally, etc. Every time I look at our two beautiful children the promise of Jeremiah 29:11 echos in my mind – “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.”