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 vote..like 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 child...no NICU...no brain surgery...no 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 :)

Friday, August 7, 2015

Summer Endings. .

As many highs as there were this summer, there were just as many realities that stopped us in our tracks.

I think the realities hit me harder as their mother. We have always been on the go. I love taking them places and allowing them to experience new things. The weight of the kiddos plus loading/unloading equipment made me second guess smaller outings this summer :/ That was a hard pill to swallow. Here's where my appreciation for these camps become even greater!

This summer wasn't a complete bust by any means. .we've just had to adjust to some new ways.

Looking at Carson, there has been so much growth this summer! He has developed a slight attitude - maybe the BIG BRO role is finally settling in?! He has been doing phenomenal in the potty training department - who would have thought 'flushing' would be a huge incentive! Carson can differentiate between HIGH 5 and GIVE ME 10. He's taking me steps with minimal support, and he's getting better at making choices.

Braylon is letting us know that walking is the only way to go for him! He wants to explore by himself, and he's so darn cute walking around like he owns the place! Bray waves when we say bye-bye, or when someone waves to him, and peek a boo is now a fun game for him! Best part is that he is starting to follow simple commands.

I'm so proud of each of their accomplishments and can't wait to see what this new school year holds. Bray's getting a new teacher - hope she's ready! Carson is staying put until we do his IEP - I know he can't wait to see his buddies!!

Side note (Cheesy mom goal) : One thing I've always dreamt about after having kids was being able to walk into Target with my children walking beside me. Carson is well on his way to doing this, but he LOVES to stare at the sun :/ He would have us hanging out in the parking lot all day with the seagulls! Braylon would take Target on like a boss - may have to attempt that when C goes back to school. #momgoal haha

Monday, July 6, 2015

Lion's Club Camp. .

I wish I could bottle up every squeal of excitement had when meeting all of the campers yesterday!! That's exactly how we know that he was ready for this.

We arrived at the 'pick-up' spot, checked in, and had some breakfast before loading our camper on the bus. He was high-fiving everyone, and in Carson fashion, eye balled one little cute girl ;)

It was truly amazing to see the friendships these children make with one another. Many were returning campers. .it's like an instant family. No tears were shed from anyone :)

Personally, I felt a sense of relief. My non-verbal, completely dependent child has the chance to go to a camp where they meet every single need he has! A camp for him to be able to make friends, have fun with minimal to no obstacles, and just be a kid.

Definitely a highlight that we didn't know existed when we entered the 'special need' world, but so very thankful for the Lion's Club!

Saturday, July 4, 2015

Time For Camp. .

We returned from our awesome beach vacation to pack another suitcase and send Carson off to camp!

His very 1st sleep away camp!!

We've been counting down the days with him and re-assuring him of all the fun he will have. Beau and I are so excited that he gets this opportunity to make new friends and have activities geared just for him! 

Here's a pic of Carson trying out his flashlight for the nighttime nature walks  

And, his trusty Bubby will be going to camp with him!! This bear was a gift from his baby shower. It was in NICU with him, he's always slept with it, and it's been with him through every surgery. Bubby has gone on every vacation with us, as well. Oh, if Bubby could talk!

Day On The Boat. .

Can you tell we love a good boat ride?! Carson thinks it's the coolest thing, and Bray seems to always take a good snooze. 

I guess there's something peaceful about the hum of a motor and wind in your hair. 

We went to Scallop Cove. AMAZING!! We saw so many sea turtles and toot a loos. I would have loved to give me hand at snorkeling for scallops, but time got away from us. The water was beautiful and so clear. Just beautiful!