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.

Kindness Matters

When it came time to transition to High School - I had many sleepless nights, tears, anxiety.  How was all of these changes going to affect Carson?  I was so nervous.

The transition went so smoothly, mostly to the fact that he has an awesome teacher and great aides.  But another reason is the principal at the High School.  He goes above and beyond. Not just for special needs kids, every kid.  But I know he has a special place in his heart for special needs kids.

Over the years, we have had a couple different incidents with Carson and kids teasing.  Mr. Mongillo, both times handled them with kindness, discipline and education.  Isn't that what a great educator does?  Part of the discipline/education over the last incident was the individuals had to spend one day a week in the Life Skills/Autism Support Classroom to interact with the kids.  He wanted them to see just how special and awesome these kids are.  He is trying to teach every kid at CHS that kindness matters.  He has put our minds at ease so much these past 5 years - he shows up at Special Olympics to cheer the kids on, he asks about them, he interacts with them. He is right there cheering on their accomplishments, just as he is picking them up when they are down, encouraging them to do their best and that your best is good enough.

There has been many rumors the past couple months that Mr. Mongillo was going to leave CHS. I don't know the reasons he wants to leave, all I know is he is unhappy.  Which makes me very unhappy.  Because he does so much to make all the kids at CHS happy.  Not just my kid - every kid.

I was asked to make t-shirts in support of Mr. Mongillo for students and parents.  I did without hesitation, but I also have a little guilt by profiting when someone else is sad.  But I found a way to pay it forward and show that Kindness Matters.  I made bags for all the kids that are in the Life Skills/Autism Support Classrooms in both the High School and Elementary school with the proceeds from the shirt sales.  Through a grant they received these kids get to go to the YMCA in Olean to swim  - they all love it. (At least I know Carson does) The bags are for them to carry their towels and swimsuits in.

Not just in school - in life - our life, the Kindness we have received - has made the days go so much better.  Whether that kindness is a hug, a shoulder, a listening ear, a pat on the back saying "great job", cheering us on, a random dinner, watching the boys... your kindness matters to us.
Thank you!

15 years

It is hard to believe that it has been 16 years since we go the diagnosis of Autism. 15 years!  Wow!  Time flies - but then again, I am not sure how it is possible that my baby is going to be 18 years old in a couple weeks.  Wasn't he just born??
15 years of ups and downs, highs and lows, tears and laughter, sleepless nights, tantrums and smiles, and hugs... but through it all LOVE.  
There have been so many changes in our lives these past 16 years, - but there has always been one constant, and that is our love for Carson.  I would give anything to have a typical child that doesn't have the struggles that he has, but just like the title of my blog, we have adjusted our sails and every day we work towards giving him the best life we can.  We might have moments of frustration, but we always start and end the day the same way.  With a hug and "I Love You" - 

I hope that my blog this month will shed light on the things that we have done since we got the diagnosis.  Things that we do that might help someone else, let others know they are not alone.  and for me - a way to share our lives. - the good and the bad.

Frustrating times

I know I am repeating myself but writing helps me vent. Carson and his “his way” tendencies can be so frustrating.

Examples of things lately...

Get clothes out for him during spirit week. I got him a yellow shirt out forgetting I had tye dyed shirts for throwback day. So I put the yellow shirt back and pit the tye dye one out. Well wouldn’t you know it, he caught me. Thought I was in the clear. But after I walked out of the room, he stormed down the hall, took off the tye dyed one and put the yellow on.  No big deal. Go with the flow let him wear yellow. Not worried about it. I toom the tye dye shirt back and asked Reed if he wanted to wear it. 

Carson went storming up and down the hall, grunting on frustration because he didn’t know where I put the shirt. (Reeds bedroom door was closed) 

Carson spent a good 10 minutes stomping and storming and wouldn’t get his breakfast because I “set” him off.  Not the way I wanted my day to start at all. 

I spent time sorting and stacking change to wrap. $70 worth of change all ready to wrap. Since I had a tooth pulled earlier in the day I left the change on my desk to wrap the next morning. That was a mistake. He didn’t like that. Pushed everything into 1 pile. 

So I sorted and wrapped another day. 

My desk always has papers all over it. Notes, orders, mail, a little of everything. Come out the other morning to them all over the floor. Guess he didn’t like where I had them. Pick up and move on

He has a spot on the kitchen counter that he charges his ipad. And nothing can touch his cords. They must lay in a certain spot. Heaven forbid someone sit something down in his spot. He will shove it go the floor. 

Sort shirts on the table and he doesn’t have his space, shove them all to one end. There goes the organization.

Some days I just want to sit in the corner and cry. Why do things have to be so hard?? 

I work hard at my job to be able to stay home and be there for him. I don’t regret it, he is my priority. Doing my crafts and shirts etc is helping me and is my therapy. That being said there are things that don’t go the way a typical business goes. The organization, the planning can get shot to hell very quicky if Carson decides he doesn’t want his way interrupted. 

So that leads to me forgetting things. Rushing, doing things last minute. Sometimes making mistakes. 

For the most part, my customers are very understanding. But it is frustrating to them and it is to me as well. I want to have a good reputation. I want customers to come back and be very happy. 

After having an extremely frustrating couple days, and then have a customer come pick up their order and tell me it was better then they even hoped, certainly helps the frustrating times. 

Everything is worth it and everything will work out. Even if it doesn’t feel like it and is super frustrating! 

Hugs

I have said it before - but it is worth sharing again - Carson's hugs are the best! 

There was a time that he didn't want touched, and he didn't give hugs.  Some with Autism are very sensitive to touch, so they don't hug.  There was a time where Carson would just come up to you and barely touch you in an attempt to give a hug -- then one day he started hugging.  And it isn't just any hug -most of the time he will wrap his arms around you and squeeze.  And he wants you to squeeze back. 

Good Morning hugs - When he wakes up every morning - he gives us a hug with a Good Morning - How are you?  Pretty awesome way to start your day if you ask me.

Good night hugs - part of his night time routine is to give Mommy, then Reed, then Daddy a good night hug, and kiss.  And if you are lucky enough to be here at bedtime, you will get one of them as well.

Welcome to my home hugs - If you come to our house, Carson will greet you with a hug.  He likes to say welcome to every person that comes in. Friends, family, customers all get hugs.  Amy, my mail lady,  Mark the UPS driver and the Fed Ex driver even get them and like getting them.  They are a little bummed after summer vacation is over and they don't get them every time they stop. LOL 

Your home hugs - Daddy gets home from work - Reed gets home from school, Mommy comes home from being gone - you get a hug. 

I love you hugs - Carson sees Bill and I give each other a hug, he will come over and get in on the hug for a big group squeeze hug. 

Feel better hugs - when you don't feel good - he knows - and he will come up and hug you.

Out of the blue hugs - the random out of the blue hugs are awesome - just out of no where he come up to you and gives you a hug. 

He is our official hug dealer.  And we love each and every one of them. 

Meltdowns

As I type trying to hold back tears - meltdowns are awful.  I am so glad that they do not happen very often - but when they do - it is exhausting and emotional on everyone. 

Carson has 3 ipads (an old one that he won't part with), his new one and one that was supposed to go to Reed, but Carson took over.  Reed never complained.  But he had recently asked to have it back, but didn't want to upset Carson.  Reed wants to be able to download books to read.  We had an upgrade available, so we used it and Bill got a new one, and Reed could have Bill's old one. 
Well, Carson gets it in his head that he has to go through all of his ipads (use till battery dies) and then while they are charging, he should be able to use Bill's and my ipad.  We don't think that it is necessary.  So we have put passwords on them to lock him out and not let him use them. 
This afternoon, Reed and I downloaded he book he wanted on his ipad and Carson saw Reed get his new (Bills old) ipad.  He has gone into full meltdown.  He has screamed no in a high pitch voice for over an hour, he has run the length of the house multiple times throwing himself on to the floor or his bed.  If you can imagine a 6ft plus 150 plus pound boy doing this, it sounds and feels like the house is crashing down. 

It is so hard to know why he is so upset - you can not reason with him.  2 of his 3 ipads are 100% charged - he doesn't need the one Reed has. 

What I wouldn't give to be able to turn it off in his head and calm him down and make him understand. 

Villagers

One thing is for sure... we would not be where we are without help from lots of people. 

Whether it be a teacher, an aide, a TSS, our friends or our family - the help and support that was given to our family will never be forgotten. 

There was countless hours of trying new things, some worked, some didn’t 

There was speech therapy, occupational therapy, this therapy and thay therapy. 

There was research done to see what else we could try

There was shoulders to cry on and tears shared 

There was babysitting so we could have a date, even if the date was only to the grocery store

There was laughter 

There were memories made

Even when there are times we feel isolated and alone - we know that we can’t do this alone. 

Thank you everyone who has gotten us to the point we are at today. We will never forget you and what you have done for us. You never know when we will be calling ya again! 

What any parent would do

More times then I can count, people say to me “You’re amazing”,  “I don’t know how you do it”... 

From the moment I found out I was pregnant, I became a Mom. I was pregnant 3 times. My first pregnancy ended in a miscarriage, and that baby was just as much my child as Carson and Reed are. 

When I become a parent, something inside me changed, it was no longer just me that I had to think about, I was responsible for another human and there was nothing I wouldn’t do for my child. 

When I was 6 months old, ans my mom was pregnant for my brother, my father walked away from us. Never to look back. We never saw him, we never met him, he never supported us, he wasn’t there for us. How does a parent do that? I can’t imagine walking away from my child. 

When I was pregnant for the baby I lost and I started bleeding, the doctor said to go home and rest. I did just what the doctor said to do. I would do anything to protect our baby and help the baby.  Unfortunately, God decided that he needed that baby with him more. 

From the moment I held Carson in my arms, I knew I would do anything for him. Drive at all hours to get him to sleep, put another bed in our room so we could all sleep comfortably, buy him every green shirt I could find, just so he could have a shirt on that comforted him, put double key dead bolts on our doors, so he couldn’t get out, put a 6ft high chain link fence around our house to keep him safe, get help when we needed it, put padlocks on our fridge, on our cupboards.... just do what needs to be done, not what needs to be done for me, for him first. 

When Reed broke his leg at 2 1/2 years old, I rode with him in the back of the ambulance to Bradford, I am not sure who was more scared, but I wouldn’t let him see it, I held it together for him. 

So I don’t see myself as amazing or anything more then just a MOM. I love all my kids unconditionally from the first moment they made me their Mom, and I will be there for them till my last breath! 

Being a Mom is amazing and I am so blessed to be able to be their Mom. 

The Bright Side

So today, like pretty much every other day, there was a frustrating moment.  Carson got his afternoon snack (leftover birthday cake) and took it back to our bedroom to eat it. On our bed! So cake crumbs everywhere. Making the bed was not on my to do list tonight. But the brightside is, tonight I will crawl into a bed with clean sheets. 

Having a 17 year old that still can’t wipe himself after going to bathroom, bright side is, he isn’t in diapers, he uses the toilet, he just can’t make his brain figure out the wiping technique. 

When we have nights where Carson will talk and talk till well after bedtime and we’re ready to scream, we have to look at the bright side that it isn’t back when he was like 5,6,7 and he would be awake ALL NIGHT  long! (I don’t know how the kid could go on like 2-3 hours sleep)

When it is bath night and the boy takes a good 45 minutes to dry himself off after baths, at least the boy will take a bath without a fight. He loves his baths. 

I have said many, many times that Autism is not a life threatening illness, it is life altering. Yes, my son has daily struggles, he is classified as non verbal (he does speak, but very little spontaneous conversation),  he will never have a normal life,  but there is a bright side. He isn’t one of the Autistic kids that hit others or himself, he isn’t violent, he does interact with us, he interacts with family and friends, he smiles, he hugs. He will get to grow up, he isn’t sick or have some illness that will take him from us.

So many times when thing happen, I have to look for the bright side. If I don’t it will totally loose my mind. People say all the time, I have the patience of a saint. I think if you were at my house every day you would realize I loose my patience a fair amount. I just have to walk away. I take my baths almost nightly to be able to relax and get me brain back to zen. 

There is always, always something to be thankful for, and there is always a bright side. Even when we don’t see it at that moment. 

Birth Day

It is kinda funny, I woke up around 4:30 and had to pee...17 years ago today, I woke up and thought I had to pee, but my water broke.  I wasn’t due for another 3 1/2 weeks.  I woke Bill up and said my water just broke, he jumped up out of bed running around in a panic, can I jump in the shower quick? Yes dear, jump in the shower quick. I wasn’t even having contractions, and we live 5 minutes from the hospital.  He showered and We made our calls to the doctor and our parents, and we went to the hospital. 

Like I said, I wasn’t having contractions, so Dr. Backus gave me petocin and said I will be back. I had said that I didn’t want anyone in the delivery room except Bill. But I was scared and hurting. Bill and I agreed on a neutral party to come in with us, so we called our friend Kristi. She came right up and helped relieve some of our fears and calm our nerves. We laughed, we cried.  I wasn’t able to get an epidural because the doctor was tied up with an emergency, so I did it all natural.  It seemed like forever, but really not a long labor, at 2:17 PM our beautiful baby boy arrived.  Carson James Powers was born at 6 lbs 13oz. And we were in love... we became parents.  We knew right there in then that we would do anything and everything for him, always there for him no matter what.  

Little did we know what our lives would intail, but as the words of my favorite song goes. He was perfectly, wonderfully, beautifully meant to be. 

Happy 17th Birthday, Carson James! 

Frustrations

Carson is not the only one that gets frustrated around the house. We all do. His oddities, his ways, his methods to his madness, his patterns... all things that make him tick the way he does, and we all love him unconditionally, we all still get frustrated at times. 

Like this morning, I took the time to take all my clothes off the top of the dresser that my awesome husband washed, dryed and folded, to sort them so I could put them away. I walked away and got doing something else (which happens all the time, I start 20 things because my brain is going 500 directions) I walk back to my bedroom to find a great big pile of clothes in the middle of the bed, because my piles were in his way when he wanted to sit on the bed and watch his ipad. 

This is frustrating to me. Now I need to take the time again to refold and resort. 

This afternoon, Bill asked me to step out on the back porch to show me something. We stood out there for 20 minutes or so and I come back in the house to find the pizza box on the counter and Carson eating, when he shouldn’t be hungry. 

He doesn’t like chairs pushed under the table, which causes many stubbed toes for his clutsy Mom.  

He has to have his juice in a row in his order and heaven forbid you move it!

He will get a bottle of water and pour it into a glass to drink. But before he does that he has to pull the label off and lay it on the counter. I try and try to get him to put in garbage. 

We all have ipads, Bill and I have iphones. Carson thinks he has to use them in a certain order, and take ours, even if his battery is charged because he thinks he has to use them in his order.  When he plugs them in to charge, he will stand and watch it till it gets past a certain point. 

He will pour a cup of juice and fill it to the absolute top of the cup and then carry it across the room or down the steps into the family room and very rarely spills a drop. (I would have 1/2 the glass dumped). He has gotten frustrated with us getting frustrated at him about filling his cup so full that he will not get a drink unless we are out of sight. Which means he won’t eat till he has his drink. And in the mornings time is to precious to argue so I just leave the room. Oh, and if we pour him a glass and it isn’t to his specifications, he will get the juice back out and fill it up. 

For those that think we let him “get away” with too much don’t walk in our shoes everyday. We have learned to pick our battles. If it isn’t dangerous or hurting him, there is absolutely no point in fighting it. Having a 6ft tall 170 pound young man throwing himself on the floor, bed or chair is not worth it. 

Any parent has moments of frustration with their kids. If you don’t, your not doing your job right.  I just choose to go to another room to scream or cry, vent to a friend, go stand in a hot shower and take a deep breath and move on.  Because if you think about it, how does Carson deal with his frustration...he moves things, he does his things to calm him brain down. 

Don’t sweat the small stuff right??? 

What ifs

As Carson’s birthday draws closer, I find myself thinking, crying, wishing, remembering, questioning....

What if Carson didn’t have Autism? What would our house be like? Why did it have to be Carson? What would Carson be planning on for the future? Would he be going to college? Would he have a girlfriend? What would he be doing in his spare time? Would he and Reed be best friends or fighting like cats and dogs? 

I get angry some days thinking he is being robbed of so many things that he should be able to be experiencing. At least once a week we get a brochure in the mail from a college. The make me sad and angry. They go right in the trash. It is not fair that we are not thinking about the future and college and careers. Instead we have to decide for him what we think is best for him and what we see him doing with his life. I want to scream I DONT KNOW THAT!! I mean I know I want him to be safe and protected and always have a loving and supportive family to always be here for him. I want him to be able to try things and see what he can do. Makes me wish we had a crystal ball to see what the right choices are. (I know, I know, we all wish that) 

I know I shouldn’t feel this way. I am lucky to have a healthy young man who is happy, loving and sweet as can be. He doesn’t have a life threatening disease. We are blessed and we are lucky! 

So I need to get over my crappy mood and look at the bright side. My handsome young man (and his brother) are 2 of the best things that ever happened to me, and I wouldn’t trade them for anything! 

Change

Autism Sign

Get upset by minor changes

Oh man, can minor changes cause an uproar in our house. Carson wants things to remain the way he wants and knows. Although I know he needs to learn to adapt to changes, there just are things that you don’t rock the boat. It just makes things run smoother and happier around here. 

For example:

Morning routine... he will get out of his bad and before he gets up and into the start of the day, he has to get in our bed. He will wait for Bill to get out of bed, and then he is usually in our bed within 15 minutes. And most of the time the stinker gets mad and will bounce around and grunt and groan until he gets the whole king size bed to himself.  When it is time for him to get up, I will tell him he needs to get dressed. He will come out, say Good morning, give hugs and then get dressed. After he eats and drinks his juice (that he seriously has to get every dang drop out of his glass) I ask him to get his shoes on and then closer to van coming he will put his coat on. 

Well a couple weeks ago I was distracted trying to finish an order in the morning. I forgot to ask him to put his shoes on. The van was pulling in so I said put your coat on. He came over put his coat on and I realized no shoes. Crap! So we put our shoes on, and he proceeds to go off stomping and groaning. He takes his coat off, throws it down. Picks it back up, puts it on and goes out the door. Thankfully the van driver understands things like this as there are 3 other special needs students on the van that could do same type of thing.  Moral to story, don’t get distracted and do things in his order. 🤪

Another example:

This evening when it was time for bed. Bill always says tell Mommy goodnight. Tonight Bill said tell Mom good night. Carson said back, tell mommy goodnight. They went back and forth a couple times and Carson would not come tell me goodnight until Bill said, tell Mommy goodnight. 

I have told before about other changes he doesn’t want anything to do with, like moving his juice out of his order, moving where his ipad sits, his cups in the bathtub so he can pour water in and out, the little kids taking his soft blankets (they all are his even though Santa left 4 of them under the tree this year), don’t put pillow cases on the pillow, don’t use the light in the bathroom over the vanity (only turn the exhaust fan and light on)

Change is good- but in this house, change does not work 98% of the time. 

Stuck on repeat

A person with Autism might repeat words or phrases over and over. (Echolalia)

Like Reed said yesterday, one of tbe most frustrating and annoying things Carson does is the repeating. Its like the record player gets stuck on a scratch. He will come to us and say a word or phrase and want us to repeat it back to him. He doesn’t care if your having a conversation with someone, or if your eating, or if your watching a movie.  He wants you to repeat what he is saying, and say it right. Sometimes his words are hard to understand and what you think he is saying isn’t what he is actually saying, so the frustration on both sides comes in.

You might think why do you get frustrated with that... it becomes frustrating when its multiple times a day. And sometimes its the same phrases day after day.  Like the past couple days... it’s snowing... it’s snowing. Why does he have to keep reminding us 🤪 

Try to find the humor, try to not get frustrated, it is what it is. It’s Carson.