Every day...week...month...year

The past couple days, I haven't shared much. I was under the weather, and I couldn't make my brain work to come up with something to share. 

I was laying here on the couch last night and I was feeling pretty crappy. Upset that I just couldn't get feeling better. I have too much stuff to do, to feel so crappy. And down comes this tall handsome young man, out of the blue, with no prompts, to do what...give me a hug and a kiss. He was just what the doctor ordered. My prefect medicine. Just one more of many amazing pieces of Carson. I love this kid so much. 

I would not trade this kid for anything, but I still feel like this kid deserves a happy, normal life. But then I know, he does have a happy life. And we try to make it as normal as we can for him. We just adjust our sails for him, for our family. I know the reason will be told to me someday. And I will understand. 

 

Yes, April is Autism Awareness Month. But in our house, it is everyday. Every week, every month, every year. 

The purpose of my blog is to share insite into our Autism life and spread Autism Awareness, and I want to try to continue to share our lifes highs, lows, milestones and set backs. So maybe you won't see me on here everyday, but you will be seeing my posts more then one month out of the year. 

Stay tuned...

❤️

 

Beautiful Destinations

 Autism might be difficult, but nothing in life is easy. 

This boy that I am privileged to call our son, is one of the most beautiful creations ever. 

This kid

I feel like I repeat myself, a lot.  Sorry folks.

Just because Carson can't talk, doesn't mean he doesn't understand what you are saying to him or around him.

This morning, when trying to get the boys up for school, I said, Carson, it is time to get up 3 or 4 times.  (Typical teenage response right) but every time I said it, he didn't move.  Then I went in and said Carson we need to get moving.  So, he moved his feet and buried himself further under the covers.  LOL - he did what I asked.  He moved!  Smarty pants!!

Last weekend, I jumped in the shower and Bill was working in the yard.  Carson unlocked the front door and went out on the porch.  Which is okay, but the last person that went out, didn't close the gate.  A friend came down off the hill and noticed Carson on the porch and the gate was open.  She called me to let me know.  I was just getting out of the shower when she called.  Carson came in to use the bathroom while I was talking.  I said to her, I will get the gate closed.  Hung up and hollered to Reed and asked him to go close the gate.  He went right out and said, Mom, it is closed.  I asked Bill if he did it. He said No.  Well, I think we know who did it.  Carson closed the gate.

Just like his birthday, he got $10 from 1 Aunt, and $10 from another Aunt.  I said how much money do you have Carson.  Immediately responded, $20.  If we lay change on the counter or dresser, he will bring it to us.  And when he hands it to us, he will tell you exactly how much money is there.

If he hides something (like the keys to the lock on the fridge or the cabinet so we can't lock them, because smarty will close the lock, so you need the keys to lock the cabinet) - or when one of my little ones will bring a DVD to watch, if he sees it he will take it.  Because you know ever DVD brought it this house, belongs to Carson.  LOL  But I can ask him a couple hours later or even the next day, where he put something, and he will tell you where it is, or go get it.
When he spills a liquid, and we find the mess but he puts the evidence back, we say Carson what did you spill, he will go get the container that is put back in the proper location.

More times then I can remember, he does things that surprise us. No one should ever say a person with Autism is dumb, (and if I ever hear someone say it, I will be sure to point out who the dumb one is) Autistic people are some of the smartest people that we can have the privilege of knowing.  Give them a chance, they will amaze you.  I know one that continues to amaze me.

Outside

 This kid absolutely loves being outside. So many friends that live in the Valley say, that they know its spring when he is on the porch. He is out there as soon as he can in the morning and is out there till dark. 

He eats his meals and snacks our there. He watches videos on his ipad or dances around. He is just happy to be outside. The front porch is covered so he is out there even when it rains. 

He gets so tanned in the summer. I am jealous of the tan he gets. 

If he can and wants to, he will even play in the rain. One of my favorite pictures of him, he is about 3 years old and catching raindrops in his mouth. 

Last summer, I warned the UPS driver, Carson loves to gives hugs and he lives outside all summer long. I wasn't to sure how the driver might feel about it, but every day that he stopped, he looked for him to get his hug. Said Hi buddy to him everyday. 

In the winter, he loves to play in the snow. He makes snow angels, eats clean snow haha, throws snowballs. He likes to sled ride too. 

A couple years ago, Bill said he wanted to add on to the deck out back. So we started buying pieces a little at a time, and the deck is coming along. When it is done, I am not sure who is going to like it more. But I am sure there is a young man at this house that will enjoy it. We will do anything we can to make these boys smile. 

Make It Count

Today, I am dedicating my post to an amazing girl, who was taken from this world way too soon.  She left us 1 year ago today.  She was a family friend.  Her smile is missed by so many.  After she was diagnosed with a terminal disease, her motto became "Make It Count"

What are ways that you can Make It Count??

When the opportunity presents itself, engage with a special needs child.  Something as simple as a smile, a hello, a hand shake, a high 5 or even a hug.  It can mean the world to the child, and it might just make you walk away with wonderful feeling inside you.

If you have a friend or family member with a special needs child, don't forget them.  Reach out to them in a way that might make their day a little brighter.  Like I said yesterday, little things like texts, phone calls, cards, etc, mean more then you might ever know.  Even if they don't show it or say it, you might just be what they needed that day.

Spend time with your family and friends.  Tell them that you love them. Don't get too busy and forget about the most important people in your life.  Because you never know, tomorrow may be too late.

Autism is not a life threatening disease, it is a life altering disease.  No it is not an easy life - but nothing in life is easy.

But you can do everything possible to Make It Count - everyday!!

Just so

 Even though it can be frustrating at times, it is in a way an amazing thing to watch Carson in action.

The things that have to be just so, and if you try to change it, it can set him off. 

When I say it sets him off,  it can be:

Yelling No

Tears (although it is extremely rare to see him cry)

Stomping his feet

Running into another room and throwing himself on the floor, bed or couch 

Slamming a door

But these are things that he wants his way:

The Hawaiian Punch bottles lined up, and when it is time to open a new bottle, you have to pick the one on the far left. If you don't he will change it out, and give you a glare for not doing it right.

We have a hasp and lock on rhe refrigerator. If the lock is not on, he will adjust the hasp to a position that he wants. And he will adjust it, every time someon opens the fridge and he is right there.

I close the shower curtain, he will open it. And the liner has to be outside the tub, which generally means a wet spot on the floor. 

His lunch box has to sit on the dining room floor, with the shoulder strap laying in a position that looks right to him. Which is a trip hazard. I pick it up. He puts it back. The only way I can put it away, is lock in cabinet. During the week, we just leave if, weekends and breaks I hide it. There was even a couple days last week that Bill's lunch box had to sit on the floor by Carsons. 

Yesterday morning, I came out and the kitchen counter was sticky so I sprayed my thieves cleaner on it and went back in the bedroom to get something. I came out to a clean counter. Carson cleaned it for me. He didn't like the wet counter. 

He frustrates us with his just so tendencies but there is also things that he does that makes us so proud. 

This kid just has a way to always make us smile. 

My friend Mr. Stress

Having a child with Autism there are so many things that cause stress in your life. How you deal with the stress can either make or break you.

When your child is diagnosed, you worry about everything... what do you do for him, how is he going to do in daycare, school, life... 

Thankfully when he was firsf diagnosed, the day care we had him at, I had family that worked there. He was accepted with open arms. They were new to Autism as well, but they learned right along with us. Since both of us worked full time at that time, that helped with the stress. Knowing he was being well taken care of makes  a huge difference. 

When I lost my job at Adelphia, I started working at the Hardware/Convenience Store that was less then one mile from my house. I had a boss that again didn't know much about Autism, but she wanted to learn, cared about him and our family and that helped me with the stress. Having support and backup is a huge stress relief. When it was time for summer vacation and it didn't make sense for me to work and pay for someone to watch them at home because I was basically working to pay a babysitter, not pay bills, she understood. Then as soon as summer vacation was over, she asked me to come back. 

We had some great people that helped us with watching the boys on breaks, but as Carson got older, it was harder and harder to find someone to watch him.  Watching a kid with Autism can be challenging and hard for a teenager to understand. 

So 5 years ago, when I had to have surgery which was going to cause me to be off work for a while and summer vacation was coming, we made the difficult decision for me to quit a job that I loved, to stay home. Eventually I started babysitting in my home, but it was another financial hit. Which was another stress. But again, having support of family and friends helped with that. My boss/friend has asked me to help out at the store on weekends or when I didn't have kids. Which gave me some extra money to help but also gets me out of the house and adult interaction. By helping at the store once in a while, I get to relieve some stress and help friends.  Deciding to stay home is definitely the right decision for our family. Carson blossomed after a while of me being home. I think he knows that I am home and he likes that. Even though he is at school, he knows what he is going to come home too.
Bills might be late, my car is over 12 years old, we don't go on vacations, but we have more then money can buy - we have a happy child, a roof over our heads and food on our table.  Everything else doesn't matter.  People say, why don't you go back to work.  Wouldn't that help your financial stress??  No, it wouldn't.  I would have to worry about what to do with the boys if they were sick, or there is no school, we would have to buy another vehicle to get us both back and forth to work, the worry stress of Carson not being happy.  Doing what I do, is less stress for me.  

A couple of years ago I started my side business of crafts, and now expanded to apparel. Believe it or not the business is a stress reliever for me. Yes, it makes me busy, but I really enjoy it. Yes, it might take me longer to do something then others because of our family dynamics, but for the most part customers understand and are willing to wait for a product that I am proud of.  I take great pride in my work.
I am lucky to have a husband that supports and loves me too.  He helps me in so many ways.  Whether it be helping me with my business, playing with the little kids (who think that he hangs the moon), or encouraging me to have girl time.  I try to get out once a month or so when we can I get a way with a friend, to go to dinner, a movie, shopping or maybe a paint night.  Getting away for a couple hours is a big stress reliever.
I have family and good friends, that see when I need a break, they help in so many different ways.  Could be a card saying hello, flowers just because, encouraging words, dinner with friends, stopping in for a visit or hugs, texts and phone calls.  Family and friends are big stress relievers.

Thank you - all of you that are reading my posts, it means so much to me.  

Explaining Autism

You would think that considering Autism has been a part of our lives for the last 13 years, I would know how to explain it to kids.  But I really struggle with it.
I have had some new kids here at the house the past couple weeks, that have not grown up with Carson and they were asking me why he says No to them when they try to talk to them. Or he won't talk to them or play with them.  And I swear every time a situation like this happens, I struggle to spit out the right words to try to make little minds understand.  I try to use the same mentality as when we talk to Carson - less is more.  The more words you say, the harder it is for them to understand.  So I just say, Carson's brain works different then yours, and he might not talk to you, or he might say No, but that doesn't mean he doesn't like you.  When he wants to, he will talk to you, and interact with you.
Monday he was saying NO to them - Tuesday he was trying to tickle them - today when they left, he said Good-bye to them.  And the little boy was 5, and he was just as excited as could be - that Carson said Good-bye to him tonight.  It just amazes me how much this kid, can light up so many people with a smile, a hug or a wave.   Which just goes to show that the saying we put on his shirt this year, is the perfect saying.... Whether you color the world, or light it up blue, you are making a difference, so keep being you.

Keep being you, Carson - you make a difference in so many peoples lives.  Even little ones that don't understand everything.

Hell...I don't understand everything.

Outside the comfort zone

I recently read an article explaining that pushing children with Autism out of their comfort zone was beneficial and necessary. I agree completely. 

To some it might seem that we let our lives revolve around Carson's wants and needs. And I guess it does. But there are things that we need to do that he might not like, but we gently presuade him to do it or try it. The first few times might be met with protest and outbursts but other times he might just blossom. 

A few weeks ago we went to Olean to get Reed sneakers for track. We went to the mall for something and decided to walk around. Reed wanted to go into the arcade so we did. We stood and watched for a few minutes, and then I decided I was going to get Carson some tokens and let him try. I am so glad I did. Because he loved it. He had big smiles and even some giggles. He threw basketballs and tried to make baskets, he hit ducks with a hammer, and I even got him to sit down at a car simulator and race. He was giggling. 

When we left there, Bill said that he was so glad I thought of that and tried it. And we need to do it again.

Another thing that we do to push him out of his comfort zone is when we go out of town. When we go, we always make sure we pick a hotel that has an indoor pool. He loves to swim. But he always will say go home now, when he is done. But with some talking and comforting, he settles down and enjoys his time. 

Sometimes it is pushing Mom and Dad out of their comfort zone too. We always worry about going to visit someone and what if Carson has a meltdown. What do they think? Are they going to want us to come back? We used to worry about spending the night at someones house and him having an accident in their bed or on their furniture. And it hasn't happened, but family and friends have assured us that they don't care if it did happen. They love Carson and they want him to come visit too. But it is hard to push ourselves out of our comfort zone. We worry. We don't want to inconvenience others. 

Gently pushing Carson out of his comfort zone is beneficial and necessary for him and his family. 

Rough & Tough

 Like I have said before, some days are rougher then others. And when you throw curve balls at Carson's routine, you get rougher days. 

No school for Easter break, so right there starts a change for him. Then add the little ones I babysit to the mix and that throws him off more. But the past couple days I have been helping a friend out by watching her 2 since there is no school. So there are alot of kids running around. Its loud, its crazy and chaotic. Overall he adjusts well. He just ignores the kids for the most part. He does his thing, if it is listening to his ipad, or dancing on the porch, or quiet time in his room. He adjusts well. 

When summer vacation rolls around, after a week or so, he knows its the normal, so he just rolls with it. He interacts with the kids when he wants to, they try to talk to him, but if he doesn't want to, he just says NO. 

Yesterday was rough for me. It was a beautiful, sunny day, but it was chilly. When the sun is shining, Carson thinks that every door needs to be open. Which means it gets chilly in the house. And the kid with stealth hearing could be outside in the front yard and hear me shut the patio door on the backside of the house. He will run in the house, open the door and go back out. If we try to lock it, he can become very agitated. So instead of risking a broken door, I put a blanket over me. 

Another thing he will do if he is agitated, I notice he will listen to the same clip of a video, over and over and over. So many times that my brain wants to explode. But it soothes him. So I just deal. But the patience becomes very thin by the end of the day. 

Some days are really rough, but I just have to be tougher! 

I am ONE

I saw this quote the other day, and I fell in love with it...

I am only one,

but I am ONE.

I cannot do everything, 

but I can do SOMETHING.

And I will not let what

I CANNOT do interfere with 

what I CAN do.

Reading that reminds me of time that people were so down on Carson.  When we asked a professional, what advise she could give us on how to get Carson to learn the sounds of his letters, and her response was "oh he will never learn the sounds of his letters"
Or when after Carson got agitated in a class and his aide said to another one "parents need to quit hiding behind all the psychological bullshit that they say is wrong with their kids, when all they really need is a good kick in the ass"
Talk about making Mama Bear madder then a wet hen.  LOL -

To the professional that said he would never learn the sounds of her letters, to this day if I see her, I can hardly stand to look at her.  She was so wrong.  He has learned all of the sounds of his letters.  At his birthday party on Saturday, he read every card that he got.  He is a good reader.  He might not read at his age level, but he can read.

To the aide, you my dear have no right to work with kids - especially kids with Special Needs, that need extra love and help.  You are lucky your not here any more, because you would be no where near my child.

If you spend any time with Carson you will agree, that the kid is super smart.  He just can't express himself or do things in a typical way.  This is the kid that can draw clues from episodes of Blue's Clues and repeat the directions that Steve or Joe tell you word for word how to do it, yet I don't even know the last time he watched the episode.  I love his drawings.  A few friends think that I need to make t-shirts with his drawings on them and sell them as Carson originals.

We have to be very strategic and careful when we do things, because he only has to see you do it once, and if it is something he wants, he will do it.  There are definitely things that Carson can not do, but we found out by trying to see if he can do it first.  Everything needs to be tried.  No one can ever say he can't do something if they haven't tried first.  And you have to try more then once.  Maybe change your approach - but you have to try.  And just because he cannot tell you something - doesn't mean he doesn't understand.

There are things he cannot do - but let me just tell you, there are many things that he can do - and he will amaze you.

Easter Miracle

I have told the story many times, but I will share again.

As many of you know, I grew up with out my biological dad in my life. He left when I was 6 months old and I never saw him again. My Uncle Bob didn't have to, but he stepped up to the plate and did everything for me that a father should do. He was the man I looked up to, my protector, my comforter and my friend. When he was diagnosed with Alzheimer's, I was devastated. It robs of so many things. Memories, from yesterday and today. One of the things that upset me is, I was so scared he wouldn't be able to give me away when I got married. But he did. Just like every little girls dreams coming true, he put on a tuxedo and proudly walked me down the isle to marry a man that has so many similarities as the man I thought of like my Dad. (They say you marry a man who is like your Dad, and I think I did just that)

There are so many similarities with Alzheimer's and Autism. We were seeing so many things that were like the same with Carson and Uncle Bob. 

One Easter Morning, the day after my Uncle had a bad meltdown, we were all gathered around at my Grandparents home. Uncle Bob sat on the couch sitting there at what looked like his own world. We just  stayed close so he always knew we were there, but gave him his space. Which is the same thing we do for Carson when he is or has had a meltdown. 

As were were sitting there that morning, all of a sudden, Carson went over and sat down beside Uncle Bob. First reaction was NO. But almost instantly we knew to leave them alone. We all watched in awe as the two of them shared something so special and miraculous that it is hard to put in words. They had a conversation. Even though very few words that we could understand were shared. They comforted each other. My son and my Dad were bonding. And it was something I was sure would never happen. But it did. Uncle Bob was tickling him gently, just like he would do to me as a little girl. They were smiling, bonding and loving each other. And just when we thought it was over, it got even better then I ever thought I could imagine. Carson climbed up on Uncle Bob's lap and they hugged each other. Carson got to feel the greatest feeling ever - an Uncle Bob hug. And Uncle Bob got to feel a hug from the greatest hug dealer around. Carson James. There wasn't a dry eye in the house. 

I hadn't really thought about it till know, but maybe that was the moment that changed Carson to becoming the great hug dealer. How awesome would that be if that was it?? Our Easter Miracle. 

Happy Easter to all my family and friends. 

 

Birthday Boy

It was Easter Sunday. I thought we were going to have dinner with family, but someone else had other ideas...16 years ago at this time, I was at the hospital. My water broke about 5:30 in the morning. 3 1/2 weeks earlier then my due date. I wasn't having contractions so I was given Potocin to get things moving. OOUCH! 

We chose not to find out what we were having, boy or girl, we didn't care. We just wanted a healthy baby to love and watch grow. At 2:17 in the afternoon, our 6 lb 13 oz baby boy was here. We were over the moon. He was perfect. We have our healthy baby. 

Every year we have cake. We had Stanley, The Wiggles, Blues Clues, Colors & Shapes, one year we even had a cake with a picture of his Magna Doodle and his famous turtle and cow drawings to name a few. Even the years he didn't like cake, or people at times, we still had cake and family around to celebrate. Now he loves his yellow cake and icing. He smiles big with candles and singing. 

Celebrating his birthday is a big deal. Celebrating the day our lives changed forever.  Thanking God for being able to celebrate him being here with us. You see I have too many family and friends that don't get this opportunity. Whether their baby was too perfect for earth, or taken from them too soon, I will never understand why. My heart aches for those parents that don't get to have cake and sing Happy Birthday to their child. I don't understand why Carson was given Autism, and given the life of struggles and hardships. But he has a life. We have many ups and downs, but we have a life to celebrate. 

So today surrounded by family and friends we will have dinner, cake, ice cream and presents to celebrate our boy. Happy Birthday, Carson James. We love you and hope this is your best year yet! 

A lot of help along the way

We would not be in the position that we are with Carson with out help along the way. 

They say they earlier you get diagnosis and start interventions the better it is for your child. And I whole heartedly agree. The longer you wait is just time  that your child regresses into his/her world and harder to pull them out. 

Carson started out at IU9 pre-school. Then there was a year of preschool that Reed went as well to give him someone at school to interact with and learn together. 

We had TSS (Therapudic Support Specialists) that worked with him at preschool, daycare and home. We had some that he didn't click with and then there was some he did. The ones he clicked with, he formed a very tight bond with. As did we. The state or powers that be, were strict that TSS were not to become emotionally attached to the family. Strictly a professional relationship. A rule or regulation that I strongly disagreed with. One of the reasons we chose to stop using the service. I couldn't support something I didn't believe in. I feel that the people that care for their clients are the ones that you want in your life. Not ones that only want to a collect a pay check. Because the one that benefits is the child, and isn't that the whole purpose of having a TSS??  When you have someone that takes time to figure out what your childs likes and dislikes are? Their strengths and weaknesses.  We still interact and are close to those TSS's that cared about him and our family. They join us in all our milestones and setbacks with whatever we need. Those are now and forever part of our family. Whether they like it or not, they are stuck with us forever. LOL 

We have also been blessed with some amazing teachers and aides over the years. More added members to out family. 

When your child is diagnosed, you need people in your life that want to be there and care about your child. I know if  any of the aides, teachers or TSS's are reading this, you know who you are. We all love you and are so thankful that you have done and continue to do to help Carson succeed. 

Emotions

Yesterday's post left me feeling guilty about being a sad post and not upbeat. Then a friend pointed out that I needed to share the ugly, sad, and bad too. And she is right. This journey is not a bed of roses. It is not all good and happy.

I go through all of the emotions at least once a week. Someones all in one day. 

Although I try to remain calm and positive, there are times that I lock myself in the bathroom with tears or bury my head in my bed crying. 

People say we were chose for this life for a reason. And I accept that, but there are still days that I ask why. Why us? Why does Carson have to struggle? Did I do something so he is being punished for it? It is depressing knowing that your child is struggling. Yes, he is a happy kid, and there are kids that are worse off then him. But we see times that he gets aggitated because he can't express his wants and needs. 

In the morning when I was trying to get Carson on the bus, he was agitated because I was asking him to get his shoes and coat on. He was grunting and stomping. Which makes me feel bad that I am sending him to school like that. 

When he dumps things for no reason it makes us angry. Like last night, Reed poured a glass of juice and got too much. So he put his cup in the fridge for today. Carson saw him do it and had it in his head that the cup didn't belong in the fridge with juice in it. So he got it out and dumped it down the drain. Things like this happen frequently, which makes us angry cause money is getting poured down the drain just because something is off in his world. 

But earlier in the evening when we were at Reed's track meet, Carson was happy and smiling watching his brother. He cheered him on. As soon as he could, he gave his brother a big hug. 

A day can be such a roller coaster of emotions. From frustration, sad, angry, happy and proud. I try to focus on the positive and happy, but there are days that is harder then others. 

Not so sweet 16

In a few days, Carson is going to reach that milestone that so many kids can hardly wait to reach. Turning 16! Getting their drivers license. Unfortunately, that is one of those milestones that Carson will not achieve. (At least at age 16, I have learned go never say never) 

This birthday is one that is hitting me hard. It makes me sad that he isn't going to get excited about driving. I know it is another worry if he was a typical kid to be driving. But I am sad it is an experience that he will miss out on.

What other experiences will he miss out on? Buying his first car, School dances, first job, college, dating, falling in love, getting married, babies... why him?? Why us?? 

I am having a hard time with this. I am blessed to have a super sweet boy who loves me, but damn it, he deserves these things too. 

Stages

I was asked what stage in life did I think was the hardest in raising a child with Autism. I really don't know the right answer. Because we get through a stage that we think we might never get through only to come to the next stage and think oh that wasn't so hard, THIS is hard.

When he was a toddler and first diagnosed, it was hard. We were all learning. And I think to myself his poor brain and body must have been driving him crazy.  I mean they say that Autistic's senses are magnified. So imagine how you feel when someone runs a fingernail down a chalkboard, you cringe from the sound and if you do it yourself the feeling gives you goosebumps. For Carson it might sound like a air horn in his ears and felt like the roughest piece of sandpaper  on his skin. And until he could learn what these feelings, sounds and smells where doing to him and trying to figure out how to control them a little he must have been going crazy. 

We didn't sleep well, he was up all hours of the night. So when he didn't sleep mom or dad didn't sleep either. He didn't eat well and we had to figure out what he did like to eat. Because he couldn't tell us. When there were no words, just pointing and guessing it was hard. 

Then there was potty training. Another stage we didn't know if we would ever conquer. Finally got the peeing down, but he would poop in a pull up He knew enough to get a pull up but not to use the toilet. That milestone happened at 9 years old. That was hard. And we still have not mastered him wiping. And he is now almost 16. No parent wants to do that for their 16 year old. We work on it every single day. And pray that some day it will click and it will be another milestone. That is hard!

There has been the peeing the bed stage. Every night and some nights it was multiple times a night. I gave up folding his sheets. I washed them every day and put in a basket in his room so they were easy to grab in the middle of the night to change his bed. At 2 in the morning who cares if they are folded, I just wanted quick and easy so I could get back in my bed. 

And of course there were the nights that he would wet the bed and be cold so he would get in bed with us. Then we didn't sleep well with another person in our bed. About a year ago, something finally clicked and it has stopped. Once in a great while he might have an accident. That was hard.

Sending him to school. Another challenge. Trying to make the right choices of what to do or not do. Lots of trial and error. Support of great teachers and aides we have figured out things that do and don't work. Homework does not work. We have found pushing him in school to work hard, he does well, but the minute he gets home from school that is his time to do his thing. Unless its bath time, supper time or down time before bed, you best be chosing your demands on him wisely or it can cause a meltdown.  If there is something you need him to do, it generally has to be requested with a reward. Do this and you can have this...a snack, gummies, etc. Again, this was hard. 

Teenage years....puberty.... HARD 

Not knowing what is going to become of his adult years... HARD 

Every stage is hard and we get through every one, some day, some how. With lots of love, hard work, some tears and determination. 

It takes a village

I have read that there is a high percentage of divorce when you have a child with special needs. I can certainly attest that stress levels are high and patience is thin at times.

I honestly do not know how single parents do it on their own, even if your child doesn't have special needs. When Bill travels for work and I am home alone it is super stressful. Throwing Carson out of his normal routine makes it tough on just one of us. Because you are trying to take care of his needs on top of the house things that need done, meals, baths etc.

Having a child with Autism, you give up things like alone time or dates. Finding babysitters is challenging. Finding someone that is responsible to care for your child and or wants the added things you need to do for an Autistic child. We only have a handful of people that we can leave him with, we are so thankful to have them too. They help us try to get away to have some time together. Even if it is just to go to get groceries with no kids. And Bill and I support each other by encouraging the other to go spend time with our friends. 

5 years ago we were struggling to find babysitter for when there was no school or sick kids. So we made the decision that I was going to quit my job and stay home. By doing it, we took a financial hit which I try to compinsate by babysitting and doing my crafts. It makes for some long days and putting in lots of hours, but it was the right decison for our family. Carson is happy to have mom home. He has blossomed even more since the change to stay home. I think it is just something that he finds comfort in, that I am home when he is done with school. I do love what I do too, so we all win. I miss the adult interaction though.

Staying home wouldn't be an option if I didn't have Bills support. Communication, love and support help us both. Keys to a happy marriage with or without a child with special needs. ❤️

Makes you go hmmmm

 In our home, even with a boy that likes routine and things done a certain way, he also is full of surprises. He does things out of the blue, that can make you smile, giggle, scratch your head, scream or cry.

Yesterday, I walked up into the kitchen to find him giggling and running away from the island. And this is what I found on the island. A knawed on stick of pepperoni. He was proud. I giggled, but was also surprised. Because this is the same kid that if we order a pepperoni pizza he will pick the pepperoni off and not eat it. Last week I got a text from Carson's aide telling me that one of his classmates shared pizza and that Carson was eating the pepperoni. 

There was the time that I walked in the bathroom to find a mixture of hand lotion and baby powder covering the bathtub and floor. He thought it was funny. I on the other hand did not. 

Then there was the time that Bill was sitting in the living room visiting with family and Carson came running down the steps walked over to Bill and licked his cheek and ran off.  Of course we all busted out laughing. 

Can never forget our "Easter Miracle" when he and my Uncle who was suffering from Alzheimers, had a special bonding moment. He sat down beside my Uncle, and the two of them had a conversation only the 2 of them understood. My uncle who loved to tickle me when I was growing up, tickled Carson. And then when we thought the moment was over, he crawled up on my Uncles lap and they hugged each other. There was not a dry eye in the house. 

 

Or the time our Aunt was visiting who was going through chemo treatment so she had a knit hat on. He had checked the hat out for a while and decided that it had been on long enough, so he ran over and quickly took her hat off and threw it down. We were a little shocked that he did it, but we all laughed. It was one of those things that just didn't look right to him. 

One night I went back the bedroom to find our entire bed covered with dvds and cds. Lined up in perfect rows, filling out king size bed and what didn't fit where on tv trays. 

One summer he had a laundry basket of assorted shirts and clothes. Every day he would lay them out in the yard in a pattern he had in his head. He weaved it around things in his way. But it had to be a certain way, and he knew what that way was. We tried to hang a clothes line for him and that worked for a couple weeks, but he liked laying it on the ground his way.

There was the time that we walked into his room to find him drawing on his white board in his room. It was covered in "clues" from Blues Clues. Each one drawn the way that he saw Joe or Steve draw on the cartoon. His photographic memory is absolutely amazing.

 

Getting ready for bed, he walks over to the window and says "lets look at the stars"

Starting singing a Christmas song in June

Picking up his keyboard or his guitar and singing a song.

I could go on and on about little things that have been moments in time that have made up our life. This kid amazes us so much everyday and truly makes us go hmmmm. 

PUBLIC OUTINGS

I will never be ashamed or embarrassed of my son to take him out in public. If someone that is uneducated, rude or disrespectful I would like to think I could speak up and stand up to them. That is not the reason we choose our outings carefully. We do that for Carson, and only for Carson.

As I said yesterday, Carson and others with Autism are high sensitivities, and since he can't tell us what is bothering him in any other way to have a meltdown we  try to think about where and what we do. 

Last summer we went into a local store and Carson got upset and threw himself on the floor. We really don't know what triggered it. And I admit that it upset me. I was in tears. It upset me to see him do that. I apologized to the owner. She assured me that I needed to not think about it one more second. It was ok and that our entire family, including Carson was always welcome in their store. 

When it is time to get sneakers for Carson we like to go to the same store everytime. A few years ago we went there and the manager helped us get the right size shoes for Carson. She has always been helpful and always greets us with a smile and is patient and caring with Carson. We went up a few weeks ago to get Reed school shoes and she was there. She said hi and Carson immediately have her a hug. She loved it of course and was in aww at how tall he has gotten. 

After the shoe shopping we knew that taking Carson to get groceries was pushing the limits. So Bill sat in the car with the boys while I went in and did the grocery shopping. Which is just another thing that we adjust to make it smoother for Carson. It isn't fun having to do it that way. I don't like shopping by myself. I enjoy shopping with my husband (I know I am crazy)  but it gives time to discuss supper ideas, or have someone else say oh yeah, this is low or gone. 

Going out of town causes other stresses. We worry about staying at someones house, what if tonight is the first night in months that he wets the bed, what if tonight is the night he jabbers all night...so many things that we just never know what is going to trigger a meltdown. So we just chose to pick our battles, again adjusting our sails and move forward.

HUG DEALER

If you have been to our house in the past couple years, you have probably been greeted by a hug from Carson.  He likes to share hugs.  Considering that there was a time that he didn't want to be touched by anyone, and hugs were few and far between, it is a huge deal for us.

Imagine trying to give your child a hug and he would turn his back and lean gently barely touching you.  It was heartbreaking as a mom to not be able to give hugs or get hugs from your child.  When he was having meltdowns and upset when he was little, I could not comfort him with hugs.

People with Autism are sensitive to touch, sounds, lights, colors, textures...each child is different.  Carson had sensitivity to touch.  Although he likes skin on skin contact.  For example he would come up to Bill with no shirt on, climb behind him in the chair or on the couch, and lift Bills shirt up and put his bare belly against Bill's bare back, then he would pull Bill back so that he had Bill's weight leaning against him.  He used to love to do that with his Papa too.
Carson would lay on the floor  and we would take exercise balls and we roll across him with our weight on top of the ball because he liked the pressure.  He still likes to lay on his bed with as many pillows as he can have piled on top of him.

For a couple years, Carson's comfort color was green.  He would only wear a green shirt.  So everyone was always on the look out for green shirts.  He didn't care what the shirt said or looked like as long as it was green.  Wore green everyday.  A few years ago, someone bought him a yellow shirt with minion on it, and that became his new favorite shirt.  So his new favorite color became yellow. (Which matches his personality, a ray of sunshine) I remember going school shopping one year, and Carson took off towards a rack of clothes that had a yellow shirt and he insisted that he get.  It was a Pittsburgh Steelers shirt.  And he was proud of it.  So he chose his own football team to support.  :-)  Now he will wear what ever shirt I lay out for him (as long as there are no tags in the shirt, if there is a tag, he will bring you scissors to cut it out), but if he is having a bad morning, and not wanting to get moving, I will get him a yellow shirt and typically that helps bring that sunshine smile out.

Carson definitely likes soft textures.  He loves super soft blankets, wrapping himself up in them over his bare skin.  And the texture of food is important to him as well.  He will eat yogurt (as long as it is Trix yogurt), but he will not eat mashed potatoes, or ice cream.  After many times of being told NOOOOO - we have gotten him to eat chicken in a different form then chicken nuggets or tenders.  I can fry a chicken breast now, or cook chicken in a crock pot so it is shredded almost, and he will eat it.  He has even started eating roast. Pork or beef.  And he will eat pork chops but he will not eat hamburger.  It is all about the appearance and the texture.  We get a smile and giggle watching him inspect his plate well before he will eat it.  Be careful that you don't season it too much because pepper or "green stuff" can make him refuse to eat it.

Lights - he loves colored lights, and he wants a light on in his room every night.  We have a rope light that goes across the ceiling, and that is part of his nightly routine, plugging that in before bed.

Back to hugs. I am not sure when it started, although I probably jumped for joy when it started, but something clicked in his brain and Carson decided that he liked hugs.  He liked getting hugs and he liked giving hugs.  He gives them to anyone that will let him that comes in the door. Last summer even the UPS driver got a hug.  People say how much they love his hugs and that they make his day.  They really are the best.  He knows when you need one too.  If I am upset about something, he always seems to know and will come give you a hug.  He will be outside and come in the door, walk over to you give you a hug and walk back outside.  If Bill or I give each other a hug and Carson is around, he will come right over to give a group hug.  Reed even has to get in on it too.  Family group hugs are the best.  When Carson started high school they told me that they were going to steer him away from giving hugs to giving hand shakes.  Although I totally respect what they are teaching him at school, I am not able to do that at home.  Hugs are a big milestone and I encourage them.  He knows that he is supposed to have his shirt on when he gives hugs, or he has to shake hands.  (Although there is the occasional time that someone is greeted with a hug by a young man in his underwear, sorry about that)

Never give up a chance to get a hug - they melt the worries and stresses away.

Just a Mom

From the moment that line shows up on the pregnancy test saying positive, you become a Mom. And even before you are able to meet your baby, you fall in love and want to do anything and everything to protect them.

People say that I am amazing, they don't know how I do it, that I have patience of a saint, or special kids are given to special parents. I do not feel like I am amazing. I am just a mom that will do anything for their child. If you were dealt the same hand that we were, don't you think you would do the same? Is it any different then a parent who has a child that is given a diagnosis of cancer or some terminal disease...those parents are the truly amazing people. They are the ones that have to worry about of their child is going to live or die. And those parents that have to bury their child and live on, they are the ones that I am not sure how they do it. My heart breaks for them. 

My child was given a life altering diagnosis, not a life threatening diagnosis. Yes, the life we are living is a hard life, and not a life we wished we would have, but we have a life. We have a happy boy that brings us so much joy and love.

I lose patience just like any mom. There are many times that I go take a long bath or shower and cry alone, or curl up on the couch or bed and want to bury my head or eat junk food. 

I would be crazy to not admit that I am terrified about the kind of life Carson is going to have. Can he ever have any sort of job? What happens if something happens to Bill and I? The thought of having to put him in a group home gives me major anxiety, I lay in bed at night thinking about all the what ifs. Those are the things that worry this mom. Not having to get him certain foods, or do things a certain things. 

I am just a girl that is lucky enough to be a Mom to 2 boys, and they are amazing in my eyes.

Brotherly Love

When you have 2 kids, you hope that they will be friends.  And if they are each other's best friends, what a bonus that is.
Carson couldn't ask for a better "big" brother then Reed.  Even if Reed is 18 months younger then Carson, there is no doubt that Carson looks up to Reed.  Reed is so good with him too.  He loves his brother unconditionally just like mom and dad do.  It breaks my heart that Reed doesn't have the typical brother relationship, that I know he wishes he had.  He will say to us, he doesn't have anyone to play with.  Reed and Carson do play together.  They wrestle around from time to time.  He will tickle Carson to make him giggle.  Reed is gentle and kind to his brother.  I am sure he gets frustrated, but he keeps his cool.
Because Carson demanded so much of our attention in the beginning years of our Autism journey, Reed learned to entertain himself, with his cartoons, video games etc.  He doesn't have friends over.  I hate that he gives up so much of a typical life.
Reed has chores to do to earn his allowance - Carson doesn't have chores.  Why not?  Why doesn't Carson have to do homework?  Why doesn't Carson have to eat a serving of vegetables with his supper?
But the kid is just as amazing as his brother.  Reed supports Carson, he protects him, he is proud of him, he loves him.  A year or so ago, Reed told us that when he gets married he will have a place for Carson to live with him.  Even typing that sentence gives me a lump in my throat and tear to my eye.  A teenage boy should not already be thinking about taking care of his brother when he is older. I have been blessed with a young man named Reed that has a big heart and loves his special brother unconditionally.  And you know what, they are best friends.

Struggles are Real

Every parent raising a child has struggles, we have them in our home too. Some that we deal with....

Communication...
How do you communicate with a child with Autism?? People ask me if Carson is non-verbal. Can he carry on a conversation with you? NO. But for the most part, he can express his wants and needs. It might be one or two words - but because we know him, we know what he is asking for. But believe me, there are still times that he can say something a dozen times before we can figure out what he wants.
Carson will come up to us and say words from a cartoon, or video he has watched, and he will say it and want us to repeat it. And you have to repeat it right, if you don't, then he will say it again, and again and again. That can get frustrating for him and for us. We try to not get frustrated, but it is hard. We can be watching a tv show and he will come in and sometimes he will get right in your face and make sure you repeat his words.
But if Carson is sick or hurting he can't tell us what hurts or what doesn't feel right. That is one of the worst feelings as a mom, when you can't take the pain away or know what is wrong. Would give anything to be able to fix it for him.

Eating....
Luckily Carson's diet has improved, but over the years it has been a big struggle. He still has a limited window of what he eats and drinks. After the stomach bug struck several years ago, and he threw up his milk, he refuses to drink milk now. But he loves cheese, but he is fussy about what cheese he eats. American Cheese and until only recently it was only white, but now he will eat orange. The cheese sticks that he eats are only one brand, Kraft. And if you buy the 2% he won't eat them. (Unless your a sneaky mom and dad and buy those and throw away the packaging before he sees it an just put the individual sticks in the fridge) He likes macaroni and cheese, but it is just cooked macaroni, and melted sharp (White) cheese. He has to have 2 grilled cheese sandwiches, and they have to be cut into 4 triangles. The boy loves his cheese pizza, and over the past couple years, he has decided that if you pick the toppings off he still has cheese pizza. He is a meat eater, he loves chicken, but he will eat ham, pork chops, and eats roast. But the boy refuses to eat vegetables. The only fruits that he eats are bananas and grapes. Breakfast he will eat toast with butter, but make sure that you get the butter on the toast when it is hot, so the butter is melted otherwise he will throw it in the garbage. He likes toaster strudels, but only strawberry or wild berry. The cookies he likes, are only ones we can get in Wal-Mart. The graham crackers can only be the red box. I think you are getting the picture. Through lots of trial and error we have discovered what he will or won't eat. When we make supper, we generally are making 2 meals. One for Bill, Reed and I and another one for Carson. But no one around here is starving, so I guess we are doing ok.

Personal Care...

Carson was 9 before he pooped on the toilet. Although we were thrilled that we finally reached that milestone, he still doesn't clean himself after. We have to do that for him. We have gone over a year since he wet the bed. Which used to be every night, sometimes twice a night. We have to wash him with the soap, we have to wash his hair. Bill shaves him with an electric razor. We were both nervous on how that would go - but it has gone better then anticipated. He handles with well. He brushes his teeth with no toothpaste, but as the dentist says - that is better then nothing. He does pretty well with that. He has to be told to do it, but if I say put deodorant on, he will.

Sorry for the rambling... I will stop now.

Adjusting our Sails

I really can't think of anyone that would chose to have to have padlocks on refrigerators, padlocks on cabinets, deadbolts on doors, locks on closets, lunch boxes sitting in the middle of the dining room floor...but when you have a child with Autism, and those things are needed to keep him safe, we do it. If there are things that make him happy, you do the things that make him happy. He can't always win, but if it prevents meltdowns, and it isn't hurting anything, then you just adjust your way of thinking and move on. 
In the beginning of our Autism journey, Carson didn't sleep well. It was hard to get him to sleep, and he didn't sleep well at night. Would jabber and talk all hours. We had a large master bedroom at the time, so we had 2 king size beds in our room. And Bill would sleep with one kid and I would sleep with the other. When it really became difficult for us to get a good night sleep. We moved one of the beds into the kids room, and we took turns. One of us would get the first shift with Carson, and in the middle of the night, we would switch. It was really rough, but you just have to do what works for you. The long sleepless nights have gotten so much better over the years. We might have one a month now. There are nights now that he might not go to sleep till midnight, but thankfully those long nights have improved.
I know they say don't let your kids sleep with you, but again, you have to do what you have to do, that works for you. I never once turned my boys away if they wanted to come get in bed with us. And to this day, part of Carson's routine that he has to do before he gets up in the morning, is crawl into our bed. Sometimes he will bounce around and huff and puff (in other words, MOM GET OUT OF HERE). Other times, he will crawl into bed with me and snuggle. I definitely prefer the snuggle mornings. 
We had to put locks on cabinets and the fridge because he will just keep eating if it is something that he likes. There was a time that Carson would open the doors all the time and go outside, so we had to put deadbolts on the doors. But they had to be the keyed ones on both sides, because he could unlock regular locks. 
Then there was the times that he got outside and I thought was headed towards the busy road that is right out in front of our house. And the time that during his birthday party, he was not liking all the people here, and he went out back, climbed the fence and we found him playing in the creek. (HE LOVES WATER) - so then we had to put up a chain link fence. And we made sure that any door was inside the fence. Then the fence gates had to have padlocks. We joke that we live in Fort Knox. But we have to do what we have to do to keep him safe.
I used to get so frustrated because I would make the bed, and he would just mess it up. Now, I just let it go, I still like it made, but I don't fight it. He thinks the shower curtain has to be open, he insists that his lunch box sit in the middle of the dining room (this is one battle that I am still working on), he will take everything off the counter if it is in the way of his ipad charger. One of the latest things we have had to change is where we keep our shampoo. We no longer can leave it in the shower, because he will dump it. So now you have to remember to get a towel and the shampoo before you get in. That is a huge adjustment when you have gotten in the shower for 40 years, and your bath stuff is always there. Not now. I could go on and on about things that we have had to give up on. We just have learned to choose out battles. Some we can win, some we can not. We just have to "adjust our sails" and move on.

Acceptance

When your child is diagnosed with Autism, you have to accept what is. Even if it is the toughest pill you have to swallow. No parent ever wants to hear those words, but you have 2 choices. You either deny what you are being told, and the only one that suffers is your child, or you accept the diagnosis and start looking for what you can do to help your child. Nothing angers me more then hearing about a parent that says there is nothing wrong with their child, when there is. Swallow your pride, and adjust your dreams you had for your child, and do what you can to help them. No one says you have to give up on your dreams, they might not happen the exact way you wanted, but the dreams that you have for your child can change into something even more then you imagined in your wildest dreams.
Growing up, my Grandpa had nicknames for all of us kids, and grandkids. And it didn't stop when the great grandkids came along too. He gave Carson the nickname of Oscar, (and the bunny that showed up on the farm around the same time was also named Oscar). I would always say that he would always call us by our nick names, unless we were in trouble or there was company. But when Carson was diagnosed, he stopped calling him Oscar. One day I asked him why, and he told me that he didn't want to confuse him or do something that would hurt his progress. 90 years old and my grandparents were more accepting then those much younger and knew more about Autism then them.
When J-Mack, the basketball team manager that played the last couple minutes of a basketball game and sank point after point after point...Grandpa cried and said some day that could be Carson.
When Carson started school he went to kindergarten and they put him in the life skills classroom. I hesitated, but trusted the experts. But it didn't take long for us to realize that accepting what the experts were saying was not what was in the best interest of Carson. I stood up on my hind legs and this Mama Bear said I want to try him in a regular classroom, with an aide. Even though some hesitated, for the 2nd half of the year he was in a regular room, and he did pretty well. Not perfect, but it was a start. We chose to have him repeat kindergarten, and the second year he was in a regular classroom with an aide. And you know what happened - the kids in his class accepted him. They knew he was different, and did things different then them, but they accepted him for who he was. Just Carson Powers - a boy in their class, that almost always had smiles and high fives to share. These same kids have grown up with him, and now they are in 9th grade, and there are still some kids that love to get that smile or high five from their friend and classmate. 
When Carson was born, the dreams for our boy, where what any parent dreams of for their child, but we had to adjust those dreams after Carson was diagnosed. And by accepting that, we have been able to see a boy, grow into a handsome young man that has a smile that can melt your heart, a hug that can make you forget your worries and milestones that can make you jump for joy and want you to shout them from the roof top. Accept that your child is different, and that it is ok. Adjust your sails, and your child will soar above the clouds beyond your wildest dreams.

April is Autism Awareness Month

April is Autism Awareness Month. But in our house, Autism is every month, every day, every hour, every minute. When you live with Autism, you breathe Autism. You have days of ups and downs, frustrations and praises, back steps and milestones.
The past couple days I have been thinking about can I do this again for another month, post something everyday that gives family and friends a little peak into our home and life. The mantra in our home, is you have to try, you never know what you can or can't do, if you don't at least try. So here I go, I will try...

Carson came into our world on April 15, 2001, he was 3 1/2 weeks early. He was our best gift from the Easter Bunny. He was a happy baby, developing right along at what I thought was typical. I really have a hard time knowing just when we started seeing things that where not right, he had lots of ear infections, and thought some of the delays were because of that, but he started not making eye contact, didn't want people touching him, hugging him. We were encouraged by his babysitter, to have him tested. She could see something was off, that was more then just delayed from ear infections. It was hard to hear from someone that they thought something was off, and I honestly can not imagine how hard it was for her to get up the courage to say to us that she thought there was something wrong. But Bill and I both are forever grateful that she was strong enough and cared enough to talk to us. She said the word Autism. I had never heard of it before. Then we were watching a Nascar race, and they were doing a piece on a driver with a child with Autism. So I went to the internet and started researching, oh my gosh, he was doing so many things they said are signs. No eye contact, touch sensitivity, lining toys up, flapping his hands...

We talked to our doctor and then we took him to Children's Hospital in Pittsburgh and got the official diagnosis. Just before his 3rd birthday, we were told that our little boy had Autism.

What do you do next? When your told that you child has Autism. ANYTHING and EVERYTHING that you can do in your power to give your child the best life possible. And so it began, and here we are 13 years later. Still going strong, still doing ANYTHING and EVERYTHING we can for our boy. A long, bumpy, windy road, and even though there are days I don't feel very strong, we are stronger then we were yesterday, and tomorrow we will be even stronger yet.