This is Us

When you have a child with a lifelong disability, you don’t do things the same ways as parents with typical children. 

You don’t go on a trip out of town and relax. If you go out of town and don’t take them, you have the constant worry of something triggering him info a meltdown, will my mom or Reed know how to get him to calm down. You worry about something happening to me or God forbid, both of us. Will my mom and Jim know how to take care of him. Mom is not a young person - is Jim ready to have his life uprooted at a moments notice?? When he agreed to be the boys gaurdians, Carson hadn’t been diagnosed. 

These things are always playing in my head. 4 hours away is about as far as I can bring myself to go away from home. I mean I know something could happen right down the road from our house. 

We have lost friendships because we can’t just make a trip to visit. We can’t leave Carson without a plan and honestly both of us have not been away from him for more then 2 nights. That is about his max. 

We don’t have the financial stability to take vacations. Would I love to take our family on vacation? Hell yes. I think Carson would love the ocean, but he might hate it. Someday I hope to see if he does. 

The mass majority of our family and friends understand and accept what our limitations are. They do so much to make it easier on us and more importantly, Carson. But there have been a few that don’t get it. It hurts. Somedays more then others, but their loss. 

When we became parents 18 years ago, we made the commitment that someone else’s life and well being was the most important thing in our lives, typical or special needs child. Nothing or no one comes before them. 

This is Us. Our family, our life. 

Milestones

18! 18 years old! It is hard to believe it was 18 years ago that Carson made his entrance into this world. 3 1/2 weeks early, Easter Sunday, and tax day. (Ya know Auntie Joy is never forgetting your birthday)

It’s been a pretty emotional day for Mom & Dad. Again it just reminds us of all the things you won’t be able to do when you hit these milestones. 

Driving, college, doing things with his friends, a girlfriend, dating, engagements, getting married, having babies... 

I know we shouldn’t feel this way, we are lucky to have him in our lives, so many friends have lost their kids that are missing out as well, but damn it. It’s not fair. Why him? Why us?? 

15 years ago. His first birthday after diagnosis, he hid behind people. He didn’t want to open gifts, he didn’t have a care in the world about blowing out candles.  Every year for his birthday. It is a struggle for me to pick a theme or what to do on a cake. Some say why bother?? But I am determined every year to celebrate him. He deserves it. 

Now he smiles huge when we sing to him. He likes to open presents. He blows out his candles! 

It  might not be the birthdays we imagined but its his birthday and we know we just need to do things his way. 

Some day we will get our answers and I try to remind myself every day is a gift. We do have one amazing boy (no, we have 2), he is awesome and like the song I shared this morning, he is Meant to Be! 

This weekend we will celebrate our awesome boy and be thankful for everyday we get to have with him. Even if there is things he won’t do, we will be celebrate all the things he can do. 

Always working

Over the weekend, my brother in law walked into the house to see me sitting at my desk. He said, I think you must sleep in that chair. He says does your machine ever not run?? Some might say I am committed, others might say I need committed. 

I can honestly say that I really do love my job. I take great pride in what I do, I work hard to provide cool items that people want to buy. 

You might be saying, what does your job have to do with Autism Awareness. Well 7 years ago, I made the decision to stay home because it was becoming harder and harder to find a babysitter for Carson. Even though  he goes to school, when school was out or he was sick it was hard.  I loved my job and loved the people I worked for. It was not an easy decision, but it was the best one for our family. I had the opportunity to watch some babies to bring in some income and be home for Carson. 

It was one of those things that just seemed to click for Carson. He seemed to really thrive after I was home. He was changing for the good and he was happy. I think he just had a comfort to know, Mom was going to be there when he got home. 

These babies I have watched over the years have become part of our family. They are learning about Autism in their own way by watching their “big brother” - they interact with each other. They love each other. It’s pretty awesome. 

About a year after I stayed home I questioned my decision, I mean as much as I love all my babies, it is not an easy job. I love them and most days are very rewarding. But financially it was a big hurt/hit. One night I was talking to my friend/former boss about going back to work. And she said to me I know its hard, but look how far Carson has come, you made the right decision. 

So I started looking for other ways to continue to stay home and bring in more money. I started using my Cricut to make invitations and decorations for parties, baby albums, and moved on to signs, and before I knew it tshirts, and now its mugs, slates and more. Always looking for new things to make. Pinterest is kinda evil 😜

So I found a way to make it work for our family to keep Carson happy and pay the bills, thanks to awesome family and friends who support my business and support our family in more ways then one. 

Come so far

There are times that I cry tears of joy when I see how far Carson has come. There was a long period of time that we had to work with Carson everyday, all day to get him to use his words. Now we are getting more and more unprompted words from him. We still have many struggles but these wins we do get are huge in our eyes. 

We started with picture cards to get him to tell us what he needed/wanted. We made picture books with family members, teachers, classmates, and friends to have him look at to help with names. 

We went from 1 word requests, to 2, to 3, to sentences. 

Rewarding him with favorite snacks for using words and doing work. He still uses the reward system for work at school and we do it at home too.  He knows when he starts something and finishes he can have a reward, whether it be snacks, ipad or something else he wants at the time. 

He does well with daddy saying, tonight we are going to shave, and brush teeth. Every other night baths are thrown into the routine. And the hair cuts. We still get stomping and storming at times, because the boy is stubbern, he does things on HIS terms. 

When we started taking him to the dentist, we drove 2 hours to State College. And they were wonderful, but it was hard to take an entire day for a 30 minute appointment. Thankfully the transition to Shane Blake here in town went super smooth. Carson knows if he is good at the dentist he gets to go to McDonalds after. A couple weeks ago we went to the dentist and on our reward trip to McDonalds we sat in the drive thru FOREVER before we could even get to order window.  I looked ar him and said how about pizza at Fox’s. Figured I would get a firm no. He said yes, pizza.  He adjusted well to the change, and we got better food too. (Thanks Tiff) 

A week ago I got a message from his teacher saying that she is so pleased with his unprompted requests. He is doing more and more of them at school and at home. 

Today, I painted our dining room/kitchen floor while I had an empty house. When he got home from school he walked up, looked around with a big smile, turned to me and said Good Job and gave me a big hug! Made my day. 

It might be 15 years in between, but to know and see how far we have come makes this momma super happy. 

Isn't it amazing??

Wouldn't you love to know what goes on in Carson's brain?  LOL

Why does he think that he needs to have the dish strainers out of the sink?  He will not leave them in there.  He will take them out and sit them where ever he wants just so they are not in the sink. And he doesn't care if there is food or anything in them.  I mean come on, I babysit kids, and they put their bowls or plates in the sink with food on them, these are to catch the food from going down the drain - but not in Carson's house. (or at school from what I understand) He has even put the dirty strainer on top of clean dishes just so it isn't in the sink.  UUGH

What is his reasoning of the juice line up? He puts it on the floor in his order - and don't you dare move it.  He knows exactly what one is supposed to be where, and that is its place until he is ready to drink it.  Even if it means it is sitting out in the path.  We have started only buying 2 at a time, so it doesn't go out to far, if I buy more, I hide it in the garage.

How does he know if the blue light on the front porch gets turned off when he is in the house? You could turn the switch off when he isn't even in the room, and when he comes back, he goes right to it and flips it back on.  I guess it is his way of saying Autism Awareness is 24/365.

Every 1st day of the month, he gets out of bed, and the first thing he does is switch all the calendars. No one even says anything to him, it could be the weekend, summer vacation... he knows when it is time to change the calendar.  It is his job.

How can he remember movie titles, names, characters?  He can type or write them all out and he very rarely spells them incorrectly.  He can draw clues from Blues Clues just like Steve or Joe does on the show.  Even if he hasn't seen it in years.

Everyday - this kid just amazes me! 

Click

Some days things click and you want to jump for joy.

We work and work and work with Carson everyday to get him to ask for things the right way, to get him to do things the right way, and we can do it over and over and over.  Then all of a sudden one day he connects and it works the way it is supposed to.  Not to say we get to stop working on it - but it means the work is worth it - and it is helping.

Carson has several ipads that are "his" and he has a pattern of how he uses them.They all have a place to charge and sit - and what ever you do - don't move them from HIS spot. When he goes through his devices, he thinks that he should be able to use ours, like Bill's or my phones or ipads.  Even though he could have a fully charged device he thinks he needs ours.  And he would be a stinker about it - he would wait till you walked away or looked away, run and grab it and take off.  The past several times that he has wanted one he will stand in front of us, usually with his arms crossed - and when you ask, "what do you want or need" - "Can I use your phone, please?" - How can you say no to that??  He asked the right way - he used his words. No he doesn't need ours - but if he is happy - just let it be. 

A couple weeks ago, Carson had the stomach bug.  Since he doesn't tell us what hurts or if he is feeling better, we just have to watch him and work at it.  After the vomiting stopped, we just kinda waited a little bit before we let him have food, or drinks to make sure he could keep it down. That evening,  Bill was back folding laundry and Carson came back and sat down at the edge of the bed with his arms crossed.  Bill asked him what he needed.  He looked right at him and said "I want supper" :-)

He might not get things fast - or the typical way - but he does understand things. He does get it!  He is one smart cookie - but when he does "get it" - it is Huge milestone in our house. 

Accept-Adapt-Understand & Love

Today was an emotional day. We said goodbye to a very special Aunt. Of course we were all sad and missing her, the memories help get us through, with laughter and some tears as well.

When Carson was diagnosed, a worry was and still is, what will others think, how will they interact, how will they treat him.

Our family and friends have accepted Carson 1000% - they love him no different then Reed. It always amazes me that when we do go out of our normal and bring Carson out of his normal and push him, how our family and friends go beyond to make him comfortable and do things maybe a little different because that is what would make him happier.

I want to share a few memories that I can think of...

If you knew my Grandpa, you knew he had a huge sense of humor. And he gave all of his Grand kids nicknames...Linus, Corky, Corny... and Carson he called Oscar. No idea why but he did. (I even have a toy license plate with the name Oscar in my keepsake box) but after Carson was diagnosed, Grandpa stopped calling him Oscar. One day I asked him why? He said,Carson has a lot going on in his head, and he doesn’t need me to call him a different name and making it confusing for him. 90 years old and he learned what he could about a diagnosis that some grown adults still don’t get.

3 years ago, Aunt Naida came for a visit and she had lost her hair due to the chemo, so she was wearing a beanie on her head. Carson had watched her for a while and wouldn’t you know it that stinker, as quick as a bunny ran down the steps and over to her, pulled that beanie off her head and with a giggle, he flung it across the room. I was embarrassed that he did that to Aunt Naida. But she wasn’t. Shocked for a second but she just laughed. She said he doesn’t understand why I am wearing a hat inside. Its okay.
Every time we saw each other after that, she talked about it and every time we giggled.

Last fall we came down to visit the family and went to Aunt Ginny and Uncle Donnie's. And even though Uncle Donnie was sick from his cancer, he went above and beyond to make sure Carson was comfortable. He knew how much Carson loved to draw, so he got an easel out and markers and set it up for Carson. He sat down and worked with him on an App on his iPad that helped with talking. It really was such a heat warming thing to watch.

So many more memories...I could go on and on.

We are so blessed and thankful, that on this journey we have so many family and friends who have adapted, accepted and loved our amazing boy just as much as we have.