Kindness Matters

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

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

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

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

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

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

15 years

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

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

Frustrating times

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

Examples of things lately...

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

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

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

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

So I sorted and wrapped another day. 

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

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

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

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

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

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

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

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

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

Hugs

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

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

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

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

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

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

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

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

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

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

Meltdowns

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

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

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

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

Villagers

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

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

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

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

There was research done to see what else we could try

There was shoulders to cry on and tears shared 

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

There was laughter 

There were memories made

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

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

What any parent would do

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

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

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

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

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

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

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

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

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