Monday, July 25, 2016

Monday Morning..The Struggle Is Real

Here's to Monday!

I have a cranky, whiney 5 year old who slept a whopping 2 hours (if that). .

A 9 year old who has an attitude due to his brothers' crankiness. .

And a full day of appointments. .

At least I go a great workout in at the crack of dawn.

Wednesday, June 22, 2016

Summer. .


Carson's kicking off summer with one of his favorite camps. He was so excited to see David (one of his counselors from last year) that he nearly jumped out of his wheelchair. I have no doubt that this will be an amazing week. 

While Carson and I tackle the early morning rides to NOLA, Beau is making sure Bray makes it to school for his last week. I'm excited that, hopefully, Bray will be able to partake in this amazing camp next year :)


This camp has been talked about throughout Miracle League, so I knew we had to give it a try. It certainly did not disappoint, and will be on our list every summer from here on out! This was a sleep away camp (C did Lion's Sleep Away Camp last year and really enjoyed we added a few more this summer). Not only was his counselor ready and so welcoming, but we were able to see some of our friends from Miracle League. 

A week of paddle boating, swimming, horse back riding, making new friends, etc....PERFECTION!!

While Carson was at camp, Beau, myself and Bray headed to our favorite Memorial Day spot - Seaside, Florida!

The water was crystal clear, the air was hot with little humidity, and we enjoyed some R&R. We missed Carson, but knew he was having a blast from all of the pics they sent. And, it was nice to have that one on one time with Braylon. I know he thoroughly enjoyed it...maybe a little too much!

On our way home from the beach, we picked Carson up. His smile, y'all!! Goodness, that kiddo had so much fun, and the counselors raved how well tempered he was. He gets that from his daddy! We cannot wait until next year's camp!

We got home to, literally, unpack, and pack everything back up for....


Carson, Bray and myself headed to North Louisiana for MedCamp. This was a camp I had seen on a list, but had never heard of anyone going. Thanks to FB and a couple of friends in that area, I quickly learned that this was a camp we must try!

Another winner!!!

They had pretty much the same activities as Dream Street - which is awesome because the kids stay busy all day. Different groups would come out and teach the kids about different things. For instance, one day they had Battle of the Badges.

Firemen vs. Cops

The kids learned all about how each of them help and protect the community, how K-9 dogs are specially trained and help them, etc.

That's only one example, but they had things everyday. It was funny to hear that, from both camps, Carson's favorite thing to do was horseback riding and paddle boating.

Braylon and I hung out at my cousin's house in Shreveport for the week. We go there often for appointments, but it was nice to go and not have a schedule. Just enjoy time together!

Carson was not ready to come home when Friday came. Seriously, if there was an all summer camp, he would be totally fine in attending it!

I am proud to announce that Carson received KING for the week from his peers and counselors.

So, here we are now..back home..back to regular therapies, BUT only for a couple of weeks ;) Carson will be shipping off to his final sleep away camp for the summer very soon.

Until then, we'll enjoy OT, PT, HippoTherapy, some pool time and lunches with friends :)

Wednesday, March 30, 2016

No More Rat Race. .

This school year has been rough for Carson. There are certain times when change is inevitable, and I try to prep him for as much as I can. Most times, he gets in the groove after a few weeks, but that hasn't been the case this year.

His classification changed.

His teacher changed.

His classmates changed.

His expectations changed.

That's a whole lot of change for C. Unless something is truly harming him, we stick things out. Let's face it, life is full of things we don't like or don't want to do, but you have to learn to deal with it at certain times.

We keep encouraging him, and reassuring him that he can make it to May. I'm telling you..he used to be awake and excited before anyone in the house. He would get so excited when I would ask if he was ready to go see his friends. Not anymore. Most days he won't be awake, and if he is, he isn't too excited.

We have tried different things with him, but he just doesn't like his class. And, if it would only be for this one year, we wouldn't be as adamant on changes as we have been. He'll be in that class for the next 4 years. It's severe/profound class. Cue in mom and dad.

There are certain things I find more important - feeding himself, walking, making choices, etc - than, let's say, knowing that the circle is blue. Which is going to be more beneficial in 10 years?! 

On top of all of this, he'll be undergoing hip surgery in early fall. It will be out of town and quite extensive. So, for next school year, he'll be placed on homebound.

Basically, homeschool, but he will still receive services from the special ed department at home. It will give me the chance to work more closely with him in those certain areas, and not have to worry with the hustle and bustle of getting to school. I'm excited for the change and very happy that I have the support from his doctors and therapists!

Here's to being a homeschool momma :) No, Braylon will not be home schooled. He's doing amazingly well in pre-k with his teacher, and we are looking forward to another year with her!

Wednesday, March 9, 2016

Sometimes, Life Just Sucks. .

Death....there is no guide to get you through the days.

I lost my mom this past January. The lowest point in my life. I watched my mom fight, and let me add that she put up one hell of a fight, to beat it. My family and I watched as she went from an independent, selfless woman to a mom who needed help with the simplest of tasks.

It was hard to watch, but she gave it her all everyday. That made it easier to bear and put a smile on our face. Most days consisted up hanging out in bed watching the Cooking Network with her. It didn't matter, she was here.

I was with her until the very end. There is nothing that can prepare you for those moments. And, as hard as it is to not have her physically here, I know that she is watching down from heaven - pain and cancer free.

Since her passing, most days I have to ask if this is just a terrible nightmare....days where I'll yell out, Mom, in hopes that I'll hear her voice. It just doesn't seem real. She's supposed to be here! Carson and Braylon had many more memories to make with their GiGi. She and my dad were supposed to grow old together.

I can't really say that it gets easier as time goes on. If anything, these last few weeks have been extremely difficult - it may be due to my celebrating events that she was supposed to "physically" be a part of. Or, it could be the sheer fact that she was a major part of our everyday life, and she's not here.

I'll just continue to take each day for what it is. .

Tuesday, November 10, 2015

Facts First, Mrs. Politician ..

I've never been one to really discuss politics openly, but I recently read a statement that hit a nerve with me. Top that with being an aggravated momma with the whole Special Education program, and you have a blog post.

Lenar Whitney recently posted about "Common Core trumping the IEP system for special needs children." Side note: I asked her to explain, and never received a response.

For one...I am a mother to special needs children, and have sat through many IEP's. I have a problem with people, especially those running for office, using quick statements that they think will gain them votes. Common Core is an issue for most families, I get that, but Common Core has never come into discussion during our IEP's. EVER!

Then, I thought a little deeper...scary, right?!

The fact that a child has an IEP does not place them as a "special needs child." For instance, kids in Gifted & Talented may have an IEP, those children who need extra time taking a test or assistance in note taking may have an IEP...there are plenty of other cases where an IEP has been written on a child, but it's merely for accommodations, not a "special needs" classification.

I can speak for my special needs children and whole heartedly say that COMMON CORE HAS NOTHING TO DO WITH THEIR IEP'S. You want to talk about Special Ed program?! Well, that's a whole other blog post/discussion.

As a special needs momma, I have enough crap to deal with everyday. If it's not a Dr. appointment I need to schedule or go to, it's an issue with insurance not approving therapy, or a wheelchair that needs to be adjusted. Best yet, let's talk about getting a truancy letter due to the fact that I pull my child out of school for THERAPY that he's not receiving in school.

Plus, my job as their mother is to make them an independent as possible. That means working on functional, living skills - independent feeding, standing, walking, communicating via AAC device or pointing, helping to put a shirt on, sitting, etc. Let's not lose sight that my kids need to enjoy life!

One response that Lenar gave is to "come to the capitol and listen to the teachers and mothers crying in the hallways about their children." After reading my above comment, I hope you gathered the fact that you will NEVER see me shedding one tear over Common Core.

Options are limited for families like mine. It's sad, but that's the truth. I'm going to find happy medium for my 8 year old, and I'm thankful my 4 year old is in good hands for a little while. Until then, Lenar, don't write about things that you, clearly, don't know anything about. Don't throw special needs children out there to gain a I said earlier, we have enough shit to deal with.

Tuesday, September 8, 2015

Just a Tuesday TimeHop Thought..

On September 8, 2010, I posted:

So excited - baby is HYDROCEPHALUS FREE!!!! They will still keep a close eye on him, but he looks great!

(credit given to TimeHop)

Little did we know, L1 Syndrome can rear it's ugly head anytime. A few weeks later, our world came to a halt when I went in for just a checkup, and saw that fluid was beginning to take over in his brain.

Present day:

It amazes me that that was 5 years ago! Where did the time go?! It also amazes me that every single detail came flooding back in my mind. The thought of having a typical brain specialists or countless therapies. Just a baby.

Between the rough start of school for Carson, therapist pushing for a little more, home life adjusting to extra weight and new equipment, etc.. I tend to wonder what it would be like to have children with no disabilities - and all the bullshit that comes with it.

Don't get me wrong, the changes that have been made will be good in the long run, but we're in adjustment period. That's it.

Crazy how one FB post can make you stop and remember that moment while also looking to see how far your children and family have come.

Thursday, September 3, 2015

Tiniest Step. .Biggest Achievement!

Today was hard. Ok, it sucked! 

I watched Carson try SO hard in therapy. I had a smile on my face while my heart was slowly shattering. His brain and legs weren't making the connection.

Basically, we are pushing him to that next level. Carson will take steps while we hold his hands, and he does pretty well (there are a few issues) when he's in his gait trainer. Today, we removed the seat part on his gait trainer, but kept his chest harness on. You would think it would be similar, if not the same, as one of us holding his hands. .but, it's not. 

Carson knew he needed to take that step, and he was trying - tongue out, his breathing changed, and he was pushing through his right foot to make his left foot move. His therapist and I were encouraging him the entire time. Not long after, a few of the other therapist were in there rooting him along

We cheered so loudly when his foot moved, literally, the tiniest step ever. HE DID IT, and the smile on his face proved it. Then, we noticed another problem. His leg started shaking, and we had problems getting it to stop.

It's called clonus. He had this as a baby, but once he started really weight bearing, it went away. Well, it's back (we've noticed it more lately, but we've been able to stop it by applying pressure to his hip). Today, it took a good couple of minutes for it to stop.

Carson's therapist and I talked about the issues she was seeing, and about his upcoming appointment with Dr. K, and physio dr.. She said that I should probably bring someone with me.

I asked if it would be information load, and me feeling mad that we weren't introduced to him 5 years ago. She said yes, but at least we are seeing him now. .this may be a long road. .but, I have her and our other therapist right there for help.  Deep breathes...

I'm so thankful for our supportive therapist. I know we'll figure it all out, but for now, we'll celebrate the small achievements :)