Ahhh, Monday

The week started out with such a delightful Monday.

We went to the park on Monday after school since I knew that the weather was calling for snow the next day.  Just for giggles, Monday was in the mid-50's and the next day it was about 12 degrees (with snow and ice that paralyzed our city and gridlocked our roads) and today (Friday) it's back to the mid-50's.  Like I said, it's been an interesting week!  

We had a great time and I enjoyed watching Cooper and his imagination.  He found just random objects to turn into toys and he hid in trees to eat his snack.  I love 4! 

 

2014, so far, is grand!

Believe me when I say that I'm fighting the urge to knock on wood to keep the other shoe from dropping, lol.  Yesterday, we received awesome news at the cardiologists office that Cooper's heart murmur is closed and that the blood flow across his heart is now completely normal.  They even let me listen to his heartbeat via the echo machine and it was a beautiful sound!  I can't tell you the relief to take his heart murmur off my worry list!  We go back in a year for a check-up to see how the stent is holding up but otherwise, they've given him a clean bill of health!

I've done a lot of thinking since we've found out that the heart murmur had grown and was causing his heart to enlarge, the surgery to repair it and the time between surgery to follow-up.  I do a lot of thinking, ok, I over-think a lot of stuff, but that's a different post!  The days leading up to the surgery were just absolute torture. Yes, I prayed and said all the "God has this under control" business.  I think I was mostly messed up because this was his heart (I wasn't nearly a mess with his hernia surgery in March) because I've been dealt heartbreaking news once before with one of my children.  The heart is just the most precious organ.  You cannot live without it.  There hasn't been a day since August 3, 2008 that I haven't though about Lily's heart and why it had to stop beating.  Sure, it's easy to say "you can't think about it that way with Coop" because a mommy's love and devotion defies logic when it concerns their child.  The panic settled in the moment he was rolled out of his room for the surgery.  I kept repeating to myself "please, God, protect his heart. Please, God, let it out beat my own. I cannot live without him."  Like I said, I over-think at times, but, I don't take a single day for granted and I notice the details that many don't so the over-thinking isn't always a negative!

I left the cardiologist's office repeating "Thank you, God!" over and over.  My heart beats with  thankfulness! 

 

 

The cardio office has a bunch of those fun house mirrors in the waiting room. This one was his favorite...

 

Shirtless and coloring while we wait for his echo..

He took my scarf and put it on. Maybe, he was cold, lol

 



 

 

I took him to get some froyo to celebrate!

 

 

You can't smile with a mouthful of froyo, yo!

 

4 going on 44

The spurts of maturity and independence with Cooper are always so much fun to me.  There are days though where I'm like "slow the roll, kid" but he's so much fun! 

I always brag on Cooper and all of his hard work.  He's been in therapy since he was 6 months old with no time period since then where he wasn't in some sort of therapy.  He handles it all in stride and I wonder if he thinks that all kids have to work this hard?  He's spirit is truly one to be admired and he teaches me so much!  He does everything with a smile on his face...many adults I know could learn a thing or two from Coop!

Tuesdays are our long days.  He has speech at 10 am then has occupational therapy at 1 which means we have a 2 hour gap between therapies.  We go over to the hospital cafeteria and have lunch then we hang out in the awesome waiting room at his therapy place.  He never whines.  He just goes along with things and does everything that his therapists ask of him.  While waiting in the therapy room on Tuesday, he flipped through a home and gardens magazine with such interest.  Then, when we finally got home (we were gone from 9:15 am until 2:45 pm) he found a bible on our bookshelf and started "reading" from it.  I laughed and told him "well, aren't you 4 going on 44 today?"  I guess, he was way too mature for Pete the Cat on Tuesday.  Whatever makes him happy!

 

Just chilling, flipping through a home and gardens magazine...

lunch in the hospital cafeteria because that's a happening place. Not really and the food is not very good...

 



There is a tunnel that goes underground that leads you from the building where he does therapy to the hospital then you take an elevator to the hospital lobby.  These colored glass panes are right off the elevator leading into the hospital lobby. He likes to watch the cars go by through the colored glass...it's the small things in life! 

 

From the serious look on his face, I'm thinking that he's trying to make it through Leviticus. Good luck with that kiddo because I've never been able to do it! haha!

 

Positvity is the name of the game!

I know my last post sounded all momma bear (and, I am, lol) but I'm excited about some positive things that are happening, too!

I received an email and a call from the church that I emailed at the end of last week regarding Cooper attending the church preschool while we're in service.  I am thrilled (over the moon!) that the call went great and they're so excited to meet Cooper and help him assimilate into their preschool ministry.  They're going to assign him a buddy that will be with him every Sunday. This buddy will be one on one with Cooper and will help him navigate through his time in the room.  Cooper is a lovable kid and gets easily attached to adults so I'm sure this will work out lovely!  Oh, and they provide a gluten free snack to boot! 

I mentioned a backpack incident in my last post so I went to Target on Saturday and Cooper chose his new rolling backpack.  He was smitten with this monkey bag even though there were Cars and Spiderman options.  I'm not going to tell him what to pick so monkey it is!  He rolled it all the way from the front doors of his school to his room this morning.  He loves this bag!  It weighs exactly what his old backpack did but this is so much more manageable for him! 

I went to my first Autism support group meeting on Thursday night and came back so refreshed and empowered! There's something to be said about talking with folks that "get it".  They understand when I tell the story of Cooper flipping out in the hallway at school for the simple reason that he's not used to seeing his teacher's assistant outside of the classroom.  They're not only empathizing but actually have similar stories to tell.  I got to talk to other moms that are a little further down the road and how they cope emotionally on what I like to call our "AUTISTIC" days when every thing is going wrong.  I'll be going every month now!  I got some good contact info on an ABA therapist so I'm waiting for a call back.  I'm just excited anytime that I can learn new things to help Coop.  My life is devoted to helping him flourish!

So, positivity is the name of the game! 

Being an advocate and a warrior...

I chuckle to myself when I think about the plans that I made for my life and how I felt that I had control over them.  I knew that I wanted to be a social worker when I was like 8 (before that I wanted to be an astronaut, lol) and I always wanted to work with the elderly.  I had no desire to work with kids but then God gave me a child with special needs.  He put a desire in my heart to help others and the desire in my heart to make the world a better place.  He's put an even greater fire in me to make the world a loving and accepting home for Cooper. 

 

One of the places that I never imagine having to fight for acceptance is church.  I'd never dreamed that we'd be turned away from our church home (that has gladly accepted our tithes) because they feel that they can't meet our needs.  Let me explain Cooper to those that may not know him that well, Coop enjoys everything that other kids do. He loves story time, crafts, playing (just not necessarily WITH other kids but plays next to them. His brain isn't wired that way, yet) and being with caring teachers. How he's different is that he's functionally non-verbal BUT communicates through sign language, Ipad and is able to answer "yes" or "no" questions. He is not potty-trained yet but we're working on it. He may need help going from one activity to another or reminders to remain seated.  Luckily, he doesn't throw many tantrums and actually does really well (maybe, even better than typical 4 year olds) with following a routine IF it's explained to him (kids with Autism like routines!!).  So, really, he's not that much extra work than a "typical" 4 year old but he does require some extra thought.  I even offered to help with transitioning Cooper into an appropriate room and assisting the teachers in them getting to know Cooper. I offered up the idea of a youth member staying with Coop as a shadow and extra set of hands. It was a no-go.  It baffles me that in this day and age with all the info out there on Autism that this church doesn't already have a program in place.  Anger doesn't begin to describe the emotion that I felt upon reading their email response.  Needless to say, they'll never receive another penny from our family. I've sent out an email to another church today and awaiting their response.

 

I'm getting used to the looks from other parents and kids.  Fortunately, Cooper doesn't notice the looks when he's babbling to me or when he completely ignores the other kid's offers to play.  Cooper is happy to be in another world and that's how his brain is wired.  He's in a special needs preschool and he's doing well there. He's learning to play with other kids but those kids are more like him.  I try to help him interact with typical kids when we're out by saying "hi" or "bye" but I find that most typical kids lose interest really quickly when kids are not like them.  I pray every day that parents raise their kids to be more empathetic and reach out to play with those that may be a little different.  I also pray that parents teach their kids that it's not nice to stare when someone is different than them, too. Sadly, a lot of adults are still a**holes in that regards so I've mastered my momma bear glare and that normally gets them into making small talk and I get to explain Cooper. 

 

Really, when your child has special needs, you have to be prepared to take on the world.  It's a battle that begins the moment that I wake up.  It can be explaining to a teacher that a 38 pound 4 year old with a muscle condition cannot carry or drag a 10 pound backpack.  True story.  Yes, the other kids carry their own backpacks but the other kids aren't lugging around an Ipad and a lunch box full of gluten-free food (breakfast, snack and lunch) because the school won't offer him those options.  I'm still working out the details on that battle.  It's a new battle almost every day..(I'm buying him a rolling back pack this weekend)...

 

A friend sent me this and it's so true.  I've never loved another human being so fiercely as I do Cooper and I'm there for every single step of this journey...

 

I made this pic for Cooper the other day with a quote that I found on Pinterest.

 



 

 

 

 



 

 

Get outside!

 

When I was growing up, you played outside every single day unless there was lightening or a tornado warning.  You went outside and came home to use the restroom and eat.  Obviously, I grew up in the country (my hometown has one redlight) and it was HUGE news when we got a Subway.  But, as much as possible, I want Cooper to have the same thoughts on being outdoors and playing. 

 

So, I've been trying to get us outdoors as much as possible even when the weather isn't perfect.  Cooper's Asthma is pretty much controlled (knock on wood) so I'm not keeping him cooped up (hehe) like I did last winter.  So, here's to more fresh air!

 

 

Now, this is the expression of unbridled joy.  He was excited to play with pine straw. That's what I'm talking about people, lol

 

 

 

 

"Hey, mom!"

 

When we got home, he still wanted to play outside!!   It was in the mid-50's and he no longer wanted to wear his coat so we played in our miniscule backyard...(one day, we'll have a real backyard, lol)

 



A surprise visit!

Now, that Cooper is in school and has therapy 3 times a week after school, I absolutely treasure any "free" time that we can squeeze in.  I can't tell you how much I've enjoyed being a stay-at-home mom and I'm sad that we're entering that age where he's spending time away from me.  I tell myself that he only goes to school until 12 (4 days a week) and we pretty much have the afternoons to ourselves BUT I hate sharing him with anyone, lol.  But, anyways...

Cooper's speech therapist is out sick so I surprised Coop with a trip to the zoo instead!  It was about 50 degrees and for whatever reason, the zoo is pretty deserted if it's under 60 degrees (spoiled southerners, myself included! Hahaha!) so we pretty much had the run of the place until after lunch.  Despite the chilliness, we pretty much saw all the animals, did the petting zoo, rode the train and played on the playground...he doesn't nap but I imagine he's going to go to sleep pretty easy tonight!

The flamingos were pretty upset that this blue heron flew into their exhibit.  Cooper found this pretty entertaining and kept doing the sign for "more"... 

"Meerkat Coop"

 



Cute little birdie!

 



 

The mommy and baby gorillas were spending a lot of time by the glass. It was so cute and it was great because a couple of the volunteers were able to give us the "family" tree on all of the gorillas and which ones were related to Willie B.  Also, I didn't know that Willie B's ashes are kept in the Willie B statue!  I'm sure I'm just late to the show on this info, lol

A quick snack in the komodo dragon exhibit.  You can see the "dragon" as I was calling him to Cooper in the background.

 



"I see you!"

 



He kept hugging the goats. I just gave up and let him and I'm praying that some strange goat flu epidemic doesn't start...

 



He pretty much had the run of the playground which I like because he's able to take his time and be safe (with my sweet nagging).  The thing about kids with Autism and SPD is that their safety awareness is pretty non-existent so I didn't have to worry about other kids getting pushy and impatient. 

 



My goal for 2014 is to get better about blogging our adventures so here's to snagging a few minutes during quiet time! Haha!

My heart discussing Cooper's...

Cooper had his heart murmur fixed on December 17th and he has recovered fully. Well, in my non-medical/mommy opinion but we go back to the cardiologist on January 23rd for the opinion that really counts.  It was a pretty routine procedure and I swear he has more energy since having the PDA repaired. He's always been a very active kid but his setting is set on warp speed these days and he's just a blur of activity. 

I make all of this sound light-hearted but truth be told, this was the scariest day of my whole life.  This may be a simple procedure but my mommy heart felt like collapsing BUT that's not even an option.  It was a long morning (the days leading up to it were pure agony) and driving home afterwards was wonderful.  The doctor that did the procedure said every thing went textbook and we were driving home about 4 hours after he was done. 

He even ate dinner and a cupcake (gluten free, I need to add!) provided by friends for dinner that night.  He didn't miss a beat!  Super Cooper, indeedy!

 

Just chilling, waiting for things to happen

Just chilling, waiting to go home!