Some days

I have said it many times. Some days are so frustrating and hard. 

The grunting, the stomping, the squealing, the repeating...

We have been fighting with Carson about his location that he insists the juice sits (which is in the middle of hallway and path) or his lunchbox sitting in the middle of the dining room. We do choose our battles and some battles are not worth fighting over. But these are 2 that are potentially dangerous. Just like this morning, Bill walks out to the kitchen with something in his hands and although we know the juice thing, he still tripped over it. The frustrating part of me wants to throw the juice out the window. But the mom in me says thay isn’t the answer. But what is??? 

Why does it have to be so hard to try to have things look decent or in a reasonable location?? 

As I am typing this blog Carson is the next room kicking the wall and the bed? And we don’t know why? Bill walks into his room and says to stop and its bedtime. Carson keeps repeating “nice hair cut, nice shave” (tonight was shave night) which Bill and I both repeated for him before we tucked him in. Why?? What is going on in his head?? 

What has caused such a sensory overload?? 

Today is a frustrating day, another day or so many questions that there are no answers to! 

Change is hard

If you know me or been to my house over the years, you know I like to change things around. I like to rearrange the furniture and things.

But when you live with a child with Autism, not everything can change. Carson has never had any problems when I move things around. Even when we change things in his room, he does good with it. But there are some things in his world that you don't change. And man it is tough. 

Going back to school is a change for him, and the past couple years, he doesn't have any issues with going back. I pray Wednesday will be no different.  Back to school means back to packing his lunch. Which means the battle will begin on where he puts his lunchbox after school until the next day. He thinks it needs to be in the middle of the dining room floor. It drives me crazy. I walk by and pick it up, he comes by and puts it back. 

One of Carson's chores is to carry his juice in when we buy it. He loves Hawaiian Punch. Problem is he thinks they need to be lined up by the fridge. Out in the middle of the floor. I have stubbed my toes on them way too many times. 

In an attempt to try to get the juice and lunch box out of the middle of the floor, I cleaned off a space on a cabinet for him to place his lunch box and the juice. This morning, I said to him that it was Carson's shelf. For his juice. I placed one jug on the shelf. He protested and put it back on the floor. Tonight after Carson went into bed, I picked up the juice and put it on the shelf. I know he will protest, but I am hoping that if we continue to work with him and be persistent, we can get him to keep his juice and lunch box on the shelf and not on the floor. 

Here's hoping....

Small Town Love

I know that there are some people that can not wait to get away from small town living.  I on the other hand, do not want to live any other place.  When you live in a place where you know everyone it never fails that someone has your back.  Over the past few weeks, I have seen so much of this love and for lack of better words, the love is overwhelming.
After the death of a young man in our town, so many hearts were broken, and even though he was only an acquaintance, and not a close friend, I had friends and family that were close to him. And when their hearts broke, my heart broke too.  I wanted to help, so I put my craft hobby/business to use and made a flag in hopes that it would make the family of this young man, feel a little better.  Nothing I could do would ever take away their pain, I knew that, but maybe it would help a little.  After the flag I made a few decals, that lead to a t-shirt, that lead to more decals and more shirts. Then hats and can koozies.  All of that to love being spread around our small town.  Being a part of that love makes me feel amazing.
Then I was asked if I would be willing to help a family in a neighboring town if I would make shirts for a family to help with medical expenses.  I said, Yes.  So another t-shirt campaign was launched.
Not long after that one was off and rolling, another t-shirt fundraiser was launched to help a young couple whose sweet little boy was born with a birth defect and had an extended hospital stay and surgery down the road.
People ask why I do this.  I don't do if for recognition or for putting money in my pocket.  I do it because I am a firm believer that when you do good, good things happen to you.

The good things happened to us today....

When Carson becomes fixated on things, it is very stressful and hard for us to get him off those things.  We just try our best to do what we can to make things work for him and what is best for our family.  When he decides that the living room couch is better to be used for a place to line up a bunch of VHS tapes and DVD's - you find a different place to sit, and let him do it.  For some reason today, he wanted to play the VHS tapes, this is something that could last for a couple hours, or a day, or weeks or even longer.  So in an effort to keep things calm in our house, I wanted to put a tv and vcr in his room so that he could watch his videos when he wanted without disrupting the entire family with his fixation.  If I didn't put it his room, With watching little ones, he could decide that he wanted his video playing in the middle of the kids doing their thing.  And when he is doing his thing, he doesn't like people interrupting him, or being close to him.  He needs his space.
Bill and I both thought we had an extra tv in the basement, but we didn't.  So I put a post on Facebook asking if someone had a small tv that they wanted to get rid of or we could buy cheap.  Within 10 minutes of posting - I had an answer that a friend had one, and she was coming to town and would drop it off. So I told Carson that a tv was coming soon, for his room. He did wait as patient as he can do.  He actually put his face in front of me at one point and said Wait, Wait, Wait. ( I  couldn't help but smile).  It wasn't long, and my friend showed up with the TV. I was blown away when she came to the door with a brand new television, still in the box.  They wanted Carson to have it. Our friends and neighbors did a good thing for us to help our family life go smoother.
I went back and hooked up his tv and vcr up (the vcr was given to us by another friend a few months ago, but was just sitting on the shelf till he decided today that he wanted it watch videos).
I wish you could have seen the look on his face when that video started playing on his tv in his room.  He exclaimed "IT WORKS" and the smile on his face was as wide as he is tall.
The kindness and love in our small town made my heart grow once again today!  I love this small town and my family and friends.  The saying is, it takes a village - small town family village!!

Full of Surprises

If there is one thing that we have learned over the past 13 years since Carson's diagnosis.  It is NEVER UNDER ESTIMATE him.  Just because he can't always say everything that he wants, or he doesn't do things the same way that a typical person does, doesn't mean he doesn't understand or can't do something.

I always go back to the educated professional who was asked how we could get Carson to say the sounds of his letters, and her response to us was, oh he will never learn that.  OH YEAH??  Just look at him now you....who is the dummy now??

No, we have now idea what the future holds for him, but what ever it is it will not be figured out by not trying everything possible to see just what he can do.  Because you just never know unless we try and try more then once.  If you first you don't succeed, try and try again.

Last week, Bill was giving the boys a ride on the go-kart and Bill let Carson try to drive it.  (there is a kill switch on the steering wheel if things didn't go well).  He did pretty well.  I think with more practice and patience from his Dad, he will do great with it.

Sometimes the surprises he gives us are him being sneaky - and yes sometimes the sneakiness makes us upset because he has made a mess or gotten into something or done something he shouldn't have, but there are also times that it make us laugh.  The other day he came down stairs and said "ice cream sandwiches" and pointed to kitchen.  Good thing I went and looked right way because there was 6 ice cream sandwiches lined up on the kitchen counter.  
He has surprised us in the past couple weeks with eating some new things.  I made pepperoni bread the other day, I have made many loaves over the years and he never touched it, but this time a whole loaf disappeared.  Right into his belly.  The next time I made it, he knew what I was making and helped me make his own loaf. Which of course he ate.  :-)  I made twice baked potatoes and went back into the kitchen to find that he had scooped out the potatoes in the middle, put that back on the pan and ate the potato skins.

Yesterday watching him play with water balloons and the hose with Reed and the little boys.  The smiles and giggles were priceless.  There was a time he would have not engaged - but sometimes a light goes off in his head and he decides that it is fun to play with them.

This morning, I fixed the little boys breakfast, and then got picking up things.  Carson came to the top of the steps and said to me "when do I get to eat??"  I know that doesn't seem big to everyone, but to us that is another step forward.  He asked a question that wasn't in his normal line of questioning.

He is always surprising us...and I look forward to many more surprises with him.

Sunshine

I have been having lots of people stop lately picking up orders. If Carson is on the porch, everyone is greeted the same. With his giant smile and a hug. 

I have lost track in the amount of people that say to me how much they love seeing him on the porch. He is always smiling and looks like he is having the best time they say. Carson is on the porch most of the day. Sometimes he is on the back porch, but the front porch is where he is happiest. 

He might be on his ipad out there watching a video or listening to something, but he is outside and he is happy. 

I can still remember the time of his life when he didn't want to be touched unless it was initiated by him and it was generally he wanted squeezed. When he wanted squeezed he would get behind you in the chair or couch and want you to lean back with all your weight pushing on him. Then something clicked in his brain and he figured out hugs made him feel good. And hugs make other people feel good too. 

Hugs are the only thing I can think of the his teacher and I disagreed over.  When he went to high school she said we needed to work with him to not give hugs but to shake hands. Although I totally respected what she was saying, I told her I would never tell him he couldn't give someone a hug. You do that at school and I support you. But at home hugs are ok. We have worked with him and he understands our rules. He has to have his shirt on if he wants to give a hug (sometimes he sneaks hugs when he is shirtless), if he doesn't want a shirt, he shakes their hand. 90-95% of the time if we are out of the house and see someone he will shake hands vs hug. 

I watch him when he greets people, it amazes me how he knows who needs that extra special big hug. It doesn't matter your age, if you come through our gate or door be prepared for a Carson hug if he spies you. Even babies (although they seem to get a kiss on the cheek or head as well). We hear his hugs made someones day, I look forward to it when I come, they are the best, they are epic. 😊

This morning as I was laying in bed thinking I shouldn't be being lazy I need to get busy. He comes and crawls in our bed (his daily routine) and snuggles up. 16 years old and wants snuggles from his Mom. I will take it. 

Our little hug dealer is a ray of sunshine for many. My wish is that he will always be sunshine for all that need it. 

Just keep swimming, just keep swimming

I haven't written on here in a while, and I should more. Because sometimes writing is therapeutic to me. 

Summer vacation is supposed to be fun. And it is, but sometimes it is more stressful. Carson and his obsessive behaviors can wear me out. I have said it before, I just wish I knew what went on in his head. The out of the blue things that he does. 

The past few days he will engage the toaster, with no bread in it. The other day there was a plastic cover sitting on top of it which he melted. There has been a toaster sitting on the counter his whole life, so why now is it something to "play" with. 

Why does the hand soap sit on the sink all the time, and today we have to dump it down the drain? 

Why can't I put a pan in the sink to soak stuck on food off without him dumping it? But if there are dishes in the sink before they go in the dishwasher they can sit there? 

There is a card table and a kid card table that he insists has to be open and sitting on the deck. And the stacked chairs have to be set around the deck. 

He has to repeat scences from an episode he has watched on his ipad and he will come to us no matter what you are doing and make us repeat what he is saying, and if you don't say it exactly like he thinks it should be (some words are very hard to figure out what he is saying) he will keep repeating sometimes getting louder and more agitated if we don't understand. 

The little kids toys, always in the same place, but yet one day they are playing with something and he wants it and gets agitated they have it. Thankfully the little kids just let him have it. But that is hard for 3/4/5 year olds to understand. Hell I am 43 and don't understand! 

Contrary to what some think, you can't watch him 24:7 and prevent the toaster being pushed down, the soap being dumped. I can't follow him around. All we can do is make sure nothing gets set on top of the toaster. And keep soap in the cupboard (buy the refill bottle and don't fill it)

And most importantly just keep swimming....it could be worse. 

Love the boy at all times, even when I want to scream. Because he is one awesome kid. ❤️

Special Olympics

I have lost track to how many years it has been that Carson has participated in Special Olympics. I can remember when we were first approached about him participating, and Bill and I were both hesitant. We both had the thought that it was for people with worse disabilities then Carson. We were so wrong. We were encouraged to have him participate. So we said ok. 

Let me just tell you it was one best decisions. It is a day that we look forward to every year. Watching the athletes is great. The athletes have a great time. The smiles on their faces, is one that makes a parents heart get bigger and bigger. Not just for your child. Every athletes achievement makes you burst with pride. The first year we went, there was also several classrooms there that went to support Carson and all the rest of the athletes. The screaming, cheering and smiles they had for the athletes was something I will never forget. I wish the school would send the entire student body to support the athletes. It would mean alot to the athletes and it will be a wonderful experience for the kids. 

The first year Carson's classmates came, and I can still remember this...it was lunch time so the teachers took the kids over to the park for a break and to eat. I didn't know they had come back over yet because they were not in the stands. Well they were announcing Carson's name as winning a medal, and all of a sudden there were cheers, screaming and clapping. The kids were so excited for Carson. I bawled. I love how these kids support Carson and all the other athletes. They had banners and signs. They chanted for their classmates. 

A few years ago the coordinators had an idea to let the athletes design the t-shirts. Carson was selected to be the first athlete to do a tshirt design. He did an awesome design. So he and Coudersport represented the 1st year, the next year it was a different athlete from a different school district. Oswayo Valley, Northern Potter and I believe this year is Austin. I think it is one of the greatest ideas. I have a shirt from every year. I hope they have them for sale today so I can add to my collection. 

There are some great volunteers that make this event go off every year. They work hard to make it a success. From the commentators in the booth announcing the winners (every athlete is a winner) but he makes each one feel like they are the only one on the podium. The volunteers in the concession stand that make sure there is food for athletes and spectators. A variety, so there is something for everyone. 

The volunteers that give out the ribbons and medals. The ones that set up the events. Set up a auction as a fundraiser. 

If you every get the opportunity to go and watch this event, I strongly encourage you to. It is an amazing experience. Today we will go cheer our boy and all the rest of the athletes on, and leave us waiting to do it all over again next year. 

 

I am so thankful that I had my eyes opened to this experience of Special Olympics. It opened my eyes and my heart even more. 💕