Our son Charlie.....well, he's amazing. Simple as that. He has shown us how to experience the World in a different view. Not a lesser view, not a wrong view, but different. This little boy has the biggest and most caring heart of anyone I have ever encountered in my life. He's smart- holy moly he's so incredibly smart, he's funny, adventurous, sweet natured, handsome (yeah, so I might be biased), loves to snuggle, is spunky and strong-willed (Lord help us).
I've mentioned in a previous post that Charlie needs as much routine as possible in order for his day to go smoothly. Well, you might imagine that's hard to do day in and day out. Life throws you curveballs and you've got doctors appointments, days off of school, holidays, etc that can easily throw a wrench in your perfectly scheduled day. We try to prep Charlie as much as possible if our plans have changed or if there's something different in our week that's coming up. However, no amount of prepping and planning can sssure things will go smoothly. He gets stressed when things don't go as he thinks they will and stress really throws him for a loop. A few months ago we were on our way to church. We were running a few minutes behind so my husband decided to take a different driving route, a route that's a little quicker. As soon as my husband turned left out of our neighborhood instead of right, Charlie got nervous. He asked where we were going and when we assured him we were going to church he went straight into meltdown mode. This wasn't our normal route and he knew it. It's only a 10-15 minute drive to our church but the entire time there was kicking, screaming, head banging against his car seat, trying to unbuckle his car seat, scratching himself......we honestly didn't think it would be a big deal. We guessed wrong. It's little things like that that can throw his whole day off. Days off of school...well, he's either at home or at daycare on those days, both places he's comfortable at and knows well but it's apparent as the day goes on that he's uncomfortable, that something is just off- more irritable and harder to keep focused.
Getting dressed in the morning can be a huge battle. We've come to know which clothes he likes over others so that helps but some days nothing feels right to him and we end up going through his entire drawer just to find something that "feels ok." Season changes can be hard. Going from Fall to Winter is the worst because he hates wearing a Winter coat. It takes several weeks to get him acclimated to the new gear again. The past couple weeks have been tough for him to understand that it's not quite warm enough for shorts. But some days I'm tired and just can't battle it. You know the saying "choose your battles wisely?" Yeah, well I'm beginning to think that was quoted from an Autism parent.
Every parent argues with their children about eating their vegetables. But for us eating is a chore in itself. Charlie is very particular about his food and we haven't quite figured this one out yet. We wonder if it's a sensory issue with different food textures but he likes both soft and crunchy foods. If we would let him eat noodles at every meal he'd be in heaven. Getting him to try new foods is like trying to shove a square peg in a round hole. It's nearly impossible. And then there's the challenge to get him to actually SIT while trying to eat. He's normally up at the table for a few seconds and then running around. The focus just isn't there.
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| Smoothie face! We try to sneak in a lot of nutrition in fun smoothies! |
Before we had kids Tyler and I were pretty active, liked being on the go, traveling, outside, camping, out with friends and family, etc. our oldest son didn't slow us down much but as soon as the twins came along things changed a bit. They were 3 months premature, spent 3 months in the hospital before coming home and then were still very small and sick when they came home. That definitely slowed us down. But we figured as they grew we'd be active with them again. We knew we wanted to keep camping in the summers, envisioned family vacations and trips, traveling to places we had yet to be. But that has been very very difficult. Did I mention Charlie needs routine? Yeah, traveling is hard to do when you need routine. Sleeping in weird places- especially when sleep is already hard to come by, not really having a schedule when you're on vacation. Even a short trip into Rochester- a 10 minute drive for us- can be excruciating. There's a lot that overwhelms Charlie by being in the vehicle. Many times he needs noise canceling headphones to help him get through. A lot of times I need to wrench my arm back to the back seat to hold his hand. That's just a car ride....I can't even begin to imagine what a plane ride would do to him.
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| One night recently when this picture was taken at 12am. He couldn't go to bed until his trains were lined up perfectly. |
Sleep is hard to come by in our house. Now, sleep was a very early indicator for us that something wasn't right. When he was a baby he would only sleep a few hours at a time. Yes, I understand that's normal for babies, but even at the age where most start sleeping through the night, Charlie didn't. When his twin brother began sleeping through the night I thought- great, Charlie will start doing the same any day now! Boy was I wrong. Charlie just started sleeping through the night less than a year ago. He was 4. Before that he would be up 1-2 times a night for severa hours at a time. Just awake. When he was very little it involved screaming episodes. We couldn't figure out what was going on with him. And no, it wasn't night terrors. He did that for a couple years when eventually the screaming stopped but he'd be up. We even went as far as having him do a sleep study, which told us nothing. Tyler and I would take turns being up with him or if I was up with him the majority of the night I'd go back to sleep as soon as the rest of the house was up for the day....but that could only happen on weekends. During the week we still had jobs to maintain. I'm pretty sure the majority of my body is made up of caffeine. If you know me well you know coffee is my best friend. Even now when I say he sleeps through the night it isn't perfect. Most nights he has a very tough time settling down to go to sleep. It's not uncommon for him to be up at 10pm still. He's not getting the amount of sleep his growing body and brain needs. But we just take it one day at a time. With most things at our house, just one day at a time.
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| Charlie was able to calm down better when Tank would sleep on his legs |
This is just a small glimpse into our life. Through the life of this blog I will give more examples but for now this is a start. I know some of you may be thinking that all kids can be picky like this or have tantrums daily. The difference with Charlie is these things don't happen and then we move on with our day....these things impact his functioning on a daily basis. These are areas where a service dog can help. The dog will help with Charlie's anxiety, in big crowds, will help him transition smoothly throughout the day, with sleep, less stress being out in the community and hopefully traveling too. We're really excited that there may be some hope to help our sweet boy be more comfortable every day.
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