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.  

Sibling Love

    What I think of autism, I think autism is something everyone should experience in one way or another. It doesn’t have to be a sibling or even a family friend but you should try for a week to help an autistic person and see how hard but rewarding it can be in the end.

Now I will talk about the questions people have asked me to answer.

What do you see when you look at Carson? I see a brother that I wish I could be closer to and experience what other siblings do but I know there are people out there with no siblings at all or even parents with only an autistic kid so I know I am still lucky for what I have and i don’t take it for granted for a second.

What is your favorite thing to do with him? I know it might sound selfish but I really don’t do much with him I have a few things I do with him but not really on a regular basis.

What bothers you most? What bothers me the most is the constant repeating that he seems to do now it is fairly annoying and it is hard to get him to stop sometimes.

What amazes you about him? What amazes me is how well he can remember what he does, he can remember everything that Steve on Blues Clues says and it is crazy to me seeing how my dad has trouble remembering what he had for breakfast.

What do you think he will do when he is done with school? It may be sad or even mean to say but I think he will do the same things he does now, which is watch videos on his IPad and go through his routines but I think he will be happier when he is out of school just like every other kid on earth.

Plot Twist

A friend shared a video with me the other day where the woman talked about when things don’t go the way you planned, its ok. Its a plot twist. 

Well let me just tell ya, that term couldn’t be more perfect for a home with Autism. That is one thing we have learned many, many times over the years. Things don’t go as planned, there are plot twists.  We just have to do our best and accept the new plot. 

I had every intention of posting every day for the month of April in honor of Autism Awareness, but due to getting sick I haven’t been able to do that. Its ok tho, I just had a plot twist. 

When Carson was born he was a healthy little boy growing like a bad weed, and as first time parents we thought he was doing everything he was supposed to. He had several ear infections and we thought he was delayed a little because of them. But plot twist, he has Autism. 

So many plot twists over the past 14 years. Some hard to swallow, but we just rewrite the script called life to what works for him and us and see where what the next chapter brings. 

Little things to some BIG to us

When you have an Autistic child and a typical child in your home, there are many things that are non typical.

Reed has said to us on more then one occasion that sometimes he feels like an only child. He doesn’t have a brother to play with like typical families. 

There isn’t much catch in the yard, or wrestling, or bonding.  But when it does happen it is a sight for sore eyes. The times that Carson does want to engage with Reed, there are memories being made that both boys will always have.  Even if Carson can’t verbalize how much fun he is having, the smiles and giggles are all the words needed. 

Today the engaging initiated by Carson was even better. He wanted to play with Reed and two of the little boys I babysit.  These 2 boys have been a part of our family since they days they were born and even Carson knows they are his family. He is their “big brother” . Today he was watching Reed and the boys wrestle around and he wanted to get in on it. There was 4 giggling boys and it was music to my ears. And the smile on Carson’s face says it all.  He loves making memories with his brothers. 

Diagnosis

Hearing the words, your son has Autism, is hard to descibe. As hard as it was to hear, the best and only thing we could do was do everything we possibly could for Carson.  When I hear of parents that deny what a doctor or professional says just because they don’t want their child to be labeled or admit that there is something is wrong with their child it infuriates me. The child is the one that suffers and gets hurt. When you become a parent the first thing you do is love your child unconditionally and do anything and everything for them. Before you! At least that’s what we do.

We did lots of research, we had meetings, we talked to people. We did lots of trial and error. We still do. We are still learning. 

Yes, we hated hearing our child had Autism. We wanted him to have a normal, happy life. Do we have a normal life? No! Do we have a happy life? YES!! We have struggles, we have good days, we have milestones, we have bad days. We just take the good with the bad. We celebrate our boy and how amazing and unique he is and love him unconditionally! 

April is Autism Awareness Month

Tomorrow is April 1st and it is a month for raising Autism Awareness. Of course in our home it is every day, every month, every year. 

14 years since we got the diagnosis that changed our lives. I have said it before - even though it is not a life threatening diagnosis, it most certainly is a life altering diagnosis. 

The goal of my blog and posts is to share a glimpse of home life. By no means am I or are we experts. Writing on here is a form of therapy for me. Somedays there are no words, some days there are many. 

If you are reading this, and you have questions about something, ask me. I will do my best to answer. 

Thanks again for taking the time to read my blog. 

Love you Forever

I try to keep my posts honest and uplifting and remaining positive and encouraging, but not all days are like that. Some days the truth is sad, depressing and hurt! So I write....

Not sure why I find myself drawn to sad love stories, but I always have.

Tonight I found myself watching a movie about a father with a wife and young daughter who found out he had terminal cancer. He thought about all the things that he would miss of his daughters life. So he decided to find a replacement that would help him. Someone he knew would be there for his wife and daughter after he was gone. I know, I know, only in the movies....

But I find myself laying here thinking about my life. No I am not sick or dying, but one of my greatest fears is what about my kids if something happens to me.  Especially Carson.  When you have a special needs kid the thoughts are on my mind all the time. To be honest it makes me afraid to go away from my kids. I know that is unhealthy and not what I should think about but I do. I make myself do things and go places. 

If something happens to me or God forbid both Bill and I, what about the boys. We have a will and we have plans set in place, but still I think about all the things that we have learned, experiences, trials and tribulations. Are they going to know he has to have 2 sandwiches, he needs help cleaning himself, he has to do things on his terms to prevent meltdowns, what foods he likes and doesn’t like, that you have to watch him when you tell him to put deoderant on or he will put have a stick on, you have to shave his face, you have to help him wash?? Is someone else going to be able to do the things for Carson that he needs? It is ALOT! I think about Reed, did he ask to have a special needs brother? Is it fair to think that his brother could become his responsibility some day? NO! IT IS NOT!! Do I think he will step up when/if needed, I think so, but it isn’t fair. 

No one should have to think about these things. But life sucks sometimes and these are the things we are left to deal with. I have learned over the past year, life is short, life gives us heartbreak, and we just never know what might happen. So these things are on my mind! 

As I tucked Carson into bed tonight and we went through our nightly routine of good nights, after I said I love you bunches, and bunches and bunches, I said I love you forever and ever. And like music to my ears Carson said back to me, forever and ever with a kiss.

FOREVER AND EVER MY BOYS, FOREVER AND EVER! 

Sometimes it just hurts

Last week I got the phone call that I feared since Carson’s diagnosis. I got a call from his teacher that kids were laughing at Carson. The environment that he was in when the laughing occured and the fact that the kids that were laughing at him were fellow classmates, made the situation even more disappointing. 

Another student saw what was going on, knew it was wrong, and reported it. The School quickly took action. Calling parents and discussing discipline. 

I really can not explain the wide range of emotions that went through me over the weekend. I was hurt, angry, disappointed, sad, scared and furious to name a few. Why do kids have to do things like this? We know it is everywhere. Everyone needs to understand that your actions have consequences, some positive, some not. THINK before you do or say something. THINK THINK THINK! 

The Mom of one of the boys reached out to me apologizing for the boys behavior. And he came to our house to apologize to my face. Honestly I didn’t know what to say to either of them. I listened to their words and I appreciated them and accepted them. His Mom and Dad are good people and it tore them up like it did us. The fact that they reached out means alot to us. He told me he was wrong and he was sorry. I think he will learn from this. His parents are still our friends. I don’t wish ill will on these boys.  

I got a call from the principal telling me what the  decided punishment would be for the boys was to be spending 1 day a week for the remainder of the school year in the classroom where Carson and other special needs students are in.

I am very pleased with this course of action by the school. I think that it is very important for these boys to be able to see the ups and downs for all these kids. 

To see the struggles they have with doing some of the simplest things, the things that we take for granted. To see the pride and joy in their faces when they accomplish something. To remember that these kids are someone’s brother or sister and to not only think how it would make them feel if someone laughed at their brother or sister for something or to think how it would make them feel if it was them that was getting laughed at. Maybe they will stop and think, wow I am lucky. I could be one of them students,. 

God chooses which kids will be special and which ones will be typical. We don’t understand why, someday we will. But what we must do is open our eyes and our hearts and realize that these kids are humans, they are who they are meant to be. We need to embrace the amazing, hug through the tears, lift up when they are down and to support and love everyone no matter what.