The joy and anguish of flying a kite

After the school year ended we took a much-needed mini vacation, which ended up being a small family reunion. My mom had just been recently released from the hospital. My brother flew out from Colorado and my dad rented a beach house on the Oregon Coast for all of us. It was a nice time to gather together and just be a family for a few days.

Part of the trip we were dodging rain drops, and this was a picture I captured one evening as I enjoyed the view of the sunset over the ocean from our rental.

The boys had a huge fascination with the stairs, since our home is single level. They kept running up the stairs and sliding down them head first. They had tons of fun!



And then, there was the sleeping loft. It was a match made in little boy heaven. They got their own cool sleeping space that gave them an awesome view of what was going on downstairs.

And, when you have a really tall daddy like Titan, this is what happens when little boy feet are dangling through the railing...

I found my dad and Monkey hanging out in the sunshine one afternoon in the back yard.

And, after about 20 minutes of carefully negotiating our extremely sensory-sensitive Prince Charming into the water of the hot tub, I was able to capture this gem before I climbed into the water with the boys.

I love the Oregon coast. It is so picturesque.

 

And, now we get to the heart of our story.

In anticipation of our beach trip, I had purchased new Angry Birds kites for the boys. They had never had a very successful kite-flying experience before, so we were eager to test the new kites' ability to catch the wind.

After a quick tutorial with a short line, the boys practiced near us and ran around in circles. They had a lovely time. Titan then showed them that they could let the line out more and watch it fly higher. All they had to do was run to keep it in the air.

And that is when it went horribly wrong.

At first, I was enamored by the sheer joy on their faces. It was an astonishing moment of freedom for them. They were running with excitement and happiness. I didn't want the moment to end and was rapidly taking pictures of them to capture this milestone. I was able to watch their fun easily through the zoom lens of my camera.

I put the camera away for a moment to chat with Titan, and that's when it happened. We both realized exactly how far down the beach the boys had gone. And they continued to run, without stopping. They did not glance back once. Monkey was in the lead and Prince Charming was just trying to keep up with his brother.

Titan and I left my dad and brother behind as we scrambled down the beach as fast as we could through the sand. Each moment we traveled, the further and further away they got. After chasing them for what was likely ten minutes (that seemed like an eternity), the wind must have shifted, because Prince Charming managed to hear one of my bellows.

He stopped and looked back. Monkey was still running at full speed.

I used exaggerated body movements and sign language to tell Prince Charming that he needed to get his brother and come back to us. He seemed to understand, thank the Lord.

He ran off to catch up to his brother and started yelling his name. Monkey was far enough away he didn't hear him. Titan and I continued toward them, but knew that neither could hear us. After a few more minutes, Prince Charming managed to get close enough to Monkey to get his attention, and he finally looked back toward us.

Titan and I were wildly signaling with our hands to come back. He saw us. Both of the boys started heading back in our direction. Thank God. I never made it down the beach as far as Monkey did, and I swear to you it was probably at least a mile away from where we had begun. Looking back down toward our starting point, my dad and brother were barely distinguishable as dark specks on the sand.

When the boys made it back to us, we quickly reeled in the lines on their kites and had a stern chat with them. The long walk back was spent in silence. There were no smiles. No more joy.

It was a shame. They had no cares in the world as they ran along the beach, loving their kites, the wind, and the sun. What was a blissfully happy moment for the boys became something entirely different. Their freedom escalated into our intense worry over their safety, and our recognition that they lacked understanding of possible consequences.

After we re-joined the others and the boys settled into looking at rocks, I quietly excused myself. As I walked up the hill to the car, the tears began to fall behind my sunglasses. I stifled my sobs until I got into my car, and then I let it all out.

This was not the first time Monkey had wandered away with no regard for safety. One time he was brought back to us by the police after being missing for almost an hour with a full-fledged neighborhood search underway. It was a horrific experience I never wanted to repeat. Talk about a flashback.

It had been a few years since we had dealt with his complete disregard for safety concerns. Titan and I thought this portion of our autism experience was finally behind us. That hope was immediately crushed as I reflected on what had just happened with the kites and what could have been, had we not been able to get Prince Charming to hear us and understand that he needed to get his brother's attention. With Monkey's high level of endurance, rate of speed, and sheer distance he had on us, there is no telling where he could have ended up before he stopped.

I was snapped back into the reality of autism.

As I cried in the car, I wondered if any of it would ever actually be behind us. The rollercoaster of the boys doing well then not doing well, improving and regressing...it's all so exhausting as so many things in so many areas of their lives can be affected.

It made me ponder the big picture. What will the future hold for my children? It can seem so uncertain from day to day. I always hope for the best, but you can't help but go through worst-case scenarios in your head. Will my planning 20 steps ahead for things ever stop? Will my boys ever lead a "normal" life? I guess I have less certainty of that than I thought I did.

A day that started with so much joy, ended with anguish.

As we checked out of our rental that morning and went down to the beach one last time to fly kites before we left town, I certainly didn't expect our vacation to end on that note. And, I doubt I will ever look at a kite in the same way again.          

The rollercoaster of change

I try hard to be real with you. I try to be authentic. I’m not about giving you only the best version of myself and my kids. If you’ve been reading my blog for any length of time, you probably know that I keep things fairly eclectic. I go from serious topics to recipes to humor to a myriad of other things, and I try to keep things light whenever possible. Humor is one of the best coping tools I’ve got.  

I’m going to be honest.

I’m struggling.

I work hard at many things. In order to keep my head above water and not be overwhelmed by everything going on in my life, I put on an exterior of positivity and confidence. It’s not a cocky thing. It’s not a fake façade. It serves a purpose. You know, one of those “create your reality” trains of thought. I know I won’t do any good to myself or anyone else if I wallow in all of my problems, so I don’t. It’s a deliberate choice, and I think it works for me most of the time.

But, I’m struggling. I couldn’t fall asleep tonight because I couldn’t stop thinking about things, and the emotions were too intense to allow me to sleep. So, I got back up to write this post. Since I started this blog, I have found that writing posts can be quite therapeutic. It helps me process what’s going on in my life so that it somehow feels more manageable. Writing is another one of my coping tools.

While change can be good, it feels really scary right now.

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I was at a place where I felt our family was more stable with the boys’ behaviors, their schooling, and even our finances were starting to slightly improve. None of it has been easy. However, if our past is any indication, getting comfortable usually means change is about to happen. I never seem to see it coming. You’d think I’d be used to the rollercoaster effect by now, but I’m surprised every single time we crest the hill and come screaming down into a new challenge.

Spring has typically been a hard time of year for us, so I know I shouldn’t be surprised. Spring Break in particular has been a time of regression for my boys in the past. And yes, we are smack dab in the middle of Spring Break right now. I don’t know what it is about the “spring forward” time change, the plants blooming and growing, and things happening with my boys, but there is something there.

I learned very recently that Monkey is having some issues that are affecting him much more than I previously realized. I don’t think he deliberately tried to hide anything from me, but he just has a hard time communicating what’s going on when it involves emotions. It’s easier for him to suppress things than to talk about them, because talking about it makes him very uncomfortable.

Of course, then I have immediate guilt about being too distracted from my nonprofit work to notice if there had been any silent signals from him. It’s a mother’s job to know. Was I paying enough attention?

Monkey is a very complex individual. He is layered like an onion. I continuously find there is more going on with him than meets the eye. It’s just really hard to get some of his layers to peel back so that I can gain a better understanding.

I immediately reached out for some psychological assistance to discuss my specific concerns, and was able to get in to talk with someone highly regarded for their work with autism. Monkey had his first appointment on Monday – on the first day of Spring Break. Fitting, isn’t it?

I have no idea how we are going to pay for it. I just know he needs it.

At about the same time I was figuring out the issues with Monkey, I learned that Prince Charming is struggling socially at school. Since he started talking, this has not been a huge concern for me. He has been much more social than Monkey, and I didn’t think I’d need to worry about that so much with him. Well, I was wrong.

And, with Autism Awareness Month, this is one of the busiest times of the year for me in my nonprofit work. It’s the height of event season and I’ve been at a dead run for God knows how long. I’m exhausted. That’s why I’ve been scarce here on the blog, because I’m too tired to keep my eyes open long enough to type anything coherent for you to read.

In the past week my Grandma was placed on hospice. It was not unexpected, but it’s still hard to grasp. Her brain doesn’t seem to be failing her, but her body is. I am thankful that I was able to go down and see her again last week and have her video chat with the boys on my cell phone. She thought that was a hoot. I haven't yet figured out how to prepare the boys for her eventual passing. Frankly, I don't know how I will deal with it for myself either.   

Tonight I learned that my parents will likely be moving back out of state. They only came back to Washington about 2 years ago, after having missed a good portion of the boys’ childhood. It was such a blessing to have my parents back and involved in their lives again. I have no idea what I will tell the boys to make them understand why they are moving. I think it will have a huge impact on Monkey in particular, who is already struggling to talk about things that make him sad. Having his Grandpa and Grandma move away will be hard for him to process.

And, I’m sad for me. I will miss being able to pop by their house. I’ll also miss the big surprise we got every time they showed up at our door unannounced and the kids went wild with excitement. And, I’ll miss all of the coffee dates my dad and I would squeeze in when the kids were at school. The thought of all that going away in light of everything else simmering in the background was the straw that broke the camel’s back.

So, I'm struggling.

I know this stuff is small potatoes for a lot of people. I also know that there are much bigger problems in the world.

But, for tonight, I’m allowing myself to fall to pieces over all of the changes that I don’t feel ready for, so that tomorrow I can hopefully re-focus and press forward.     

 

The saving grace of going back to school

When summer draws to a close and school starts again, I think what many of you do:

It’s the most wonderful time of the year!

 

I crack up whenever I see this video!

How did your summer go? Did you survive? Did your children survive?

We did okay. Not great. Not horrible. Just okay. Prince Charming lost his ESY (extended school year) services. Monkey somehow managed to keep his ESY, although they cut his hours in half. I’m sorry, but 12 hours over an entire summer isn’t super helpful. Whatever. That’s another conservation for another day… We happen to love our ESY teachers, and something is better than nothing.

Last spring I found a local Groupon-type deal for a beginner’s karate class and thought it would be a perfect summer activity. It would be a good, healthy, and inexpensive way to add a routine to our summer schedule. At the beginning of summer Prince Charming was dying to go and Monkey would launch into tears at the mere mention of it. My how things changed once they started going to the class! Monkey enjoyed himself immensely and managed to earn his white belt. Prince Charming refused to participate and would launch into a meltdown at the drop of a hat. And, that’s one more conversation for another day…   

Despite summer preparations including a newly defined reward schedule, a list of expected behaviors, and lists/charts around the house for regular routines, the break from school was not easy. It never is. I did my best to set things and prepare so that the summer would be simple and straightforward, but life has a way of changing things up sometimes.  

In fact, we saw some significant regression over the summer with Prince Charming. The words, “I told you so” (directed to the school district in regard to their removal of services) come to mind. His sensory system became quite a bit more reactive, and I found myself needing to equip him with a sensory toolkit just to leave the house each day. We haven’t had to do things to that level in a quite some time and it was disheartening to see him react so easily and quickly escalate into meltdowns.

The boys also found their brotherly voices over the summer break. And by brotherly voices, I refer to their constant bickering, yelling, screaming, fighting, kicking, and general disdain toward one another. The silver lining to that cloud is that it is all very neurotypical behavior, so I had to remind myself of that as I could feel my head wanting to explode repeatedly.

As summer wore on, there was a general shortening of my fuse. At times I possess a large amount of patience; other times, well…not so much. I have been told by parents and professionals on various occasions that they are impressed with my patience and calm demeanor around my kids when they are acting up. I am no saint, that’s for sure.

I found myself getting irritated more quickly and the general noise level began to really bother me. My house has never been a quiet place, but during the summer ear plugs should be standard issue.

Needless to say, my nonprofit work and blog writing came to a grinding halt. You may have noticed I was almost completely absent here on Caffeinated Autism Mom during the summer months. Now you know why. I can’t write or work in a chaotic environment. My brain doesn’t function that way. I can only filter so much and then at a certain point I just can’t do anything productive.

During the summer I actually had my first migraine in years, and there were also a couple of multiple-day headaches thrown in there for good measure. At a certain point I became ugly mommy with a bad attitude that could raise her voice at the drop of a hat. I’m not proud of that. It’s not a shining moment for me at all.

I hadn’t truly realized how much my attitude had changed until one day things were particularly rough. The boys were bound and determined to fight like cats and dogs and I had simply had it. I was DONE. And, I yelled. Loudly. In no uncertain terms, I laid down the law and separated them. Since they obviously couldn’t be near each other without having a problem, I took away that choice for the afternoon.

Later that day in a quiet moment when peace had been mostly restored, Prince Charming came to sit with me and said that he was looking forward to school so that I wouldn’t be mad anymore.

Knife to the heart.

Within the same hour, Monkey told me that I needed a break. He then told me that when he and Prince Charming started back to school again he thought I would be happier. That effectively twisted the knife.

I felt as small as a gnat.

I took each of the boys aside and apologized for my behavior. I talked with them about why I was having a hard time and what they could do to help so that we could all be happier.

School started the next day. I did not do a celebratory dance or take a nap or eat a bucket full of chocolate. I felt sad. I was relieved for the quiet, but I was sad that our summer ended the way it did. I can’t fix it or make it better. I can only try to do better next time.     

I will tell you that I noticed an immediate shift in my demeanor. When the boys got home from school, I was eager to talk with them about their day. I was 100% clued in, sharing the moment with them and truly happy to hear all that they had to say. I could feel my blood pressure lower and my jaw un-clench. My joy had returned, and it only took one day with a 4-hour break from the boys to do it.

It really is the most wonderful time of the year.   

   

Spring Regression, Summer Transition

Did any of you experience a regression with your child during the spring? I can’t tell you how many people I know had chaos bloom in their children when spring hit. It’s like all of our kids drank the same water and spontaneously started freaking out. It happened in my house, times two! It’s a miracle I survived. Seriously.

The boys fought like rabid animals when they were at home. I got phone calls home from teachers several times a week. One of the most interesting calls home was when I found out that Prince Charming told another classmate to “kiss my boobs.” Yep. My little boy. I was mortified. Luckily, the teacher found the humor in the situation and knew that there was no way he would have learned it from home.