Confessions 101

I thought it was time I shared one of my confessions of being a special needs mom--

After everything else we were trying to find answers to here comes an adaptive brace recommendation; initially it came from his second physical therapist before he started going to Easter Seals, when we had home sessions. She recommended them to support his ability to attempt with standing correctly and obtaining proper balance.

Stomp the Yard!

That also came with a helmet recommendation since he was banging his head (which he still does), however he surpassed that requirement.
The braces was again recommended from his new physical therapist once he started at Easter Seals, which this time around we actually went through with an evaluation, fitting, insurance clearence and actually revieving the first pair {SMO SureSteps} in June 2013. And recently received a second pair in September 2014 {AFO}. The struggle has been even harder purchasing shoes to fit correctly, asthese have a bit more of a heel. It requires a size up, removing the shoe padding and most importantly putting some thick socks, preferably dry fit as they cause his feet to sweet ridiculously. And unfortunally Ive notices it also keeps his feet peely if there not moistened enough. Luckily after some research and personal experience New Balance has alwaya been the best choice of shoe for his braces, with Adidas also being a great pick. There are some shoes Ive been able to purchase from different labels/stores that fit well too; such as Target, Old Navy, Gap, Childrens Place, H&M, Crocs, & Sperrys. But even after finding them I always have to try them on and have him walk around to confirm there good.

I need to find a repurpose project with the shoepads!

 The most important part is assuring the shoes has actual shoe strings and not them stretchy strings, making sure the shoe is capible if being bent up for wigglying his foot in, picking wide for width if possible and that the pad can be removed without completely ruining the shoe.

Today was a shoe-tastic finding day because I found two pairs in target for $12.99 (awesome bargain right) with one of them being a pair of winter boots as I wasnt able to find some before, our experience with timberlands last year was very dufficult and timly putting one. And as I mentioned the current brace has a stepper heal. Needless to say both of the shoes purchased today fits swell!

Shoe Take 2!

So do know My Little Forest Gump will be stepping and stomping in his new kicks next week; unfortunately shoes dont last long before crunch times sinks in which is my reason for buying more then a few at one time to give him options.

In ending this post do know this was not a post of complaining because while this is sometimes a bit overwhelming to me, there are other special need parent(s) that have more worries then finding shoes to properly fit a brace. This was just one of My Confessions of our journey.....trust, there will be more.

"As you begin to realize that every different type of music, everybody's individual music, has its own rhythm, life, language and heritage, you realize how life changes, and you learn how to be more open and adaptive to what is around us."

Yo-Yo Ma

Lets Go! Step!

This video gives ME Life!!

It may be much of nothing to some, appear to be just a kid walking up the steps. But to ME, this kid of mines is effortlessly making such tremendous progress. Each day he is showing his ability and determination to battle his disabilities. Its one thing to hear he's done something but to see it gives me pure happiness.

While writing this post I happened to look up to my right where my vision board is, and the first thing that stood out was the Serenity Prayer. Oddly enough this is my most favorite prayer; yet it defines My Landon in so many ways.

"God grant me the serenity to accept the things I cannot change, 

the courage to change the things I can, 

and the wisdom to know the difference"!

His serenity, courage and wisdom speaks louder than words itself--and for that I, We, He is Gracefully Blessed, amongst the Best!


I hope this video fulfills your heart as much as it has mines!

Signed,
Mommy of an Achiever

My Funny Valentine

Happy Valentines Day!!

Landon & I got a early start on our morning today, we attended the Valentines Party at HSC with Kids In Action.

We arrived a tad bit late but in good timing; it was still lots of families and plenty of kiddies there. After getting settled and comfortable as we started walking around; there was an indescribable feeling of overwhelming joy that came upon me with being a in a room full of special needs kids. Just seeing their differences, how they interacted with the other kids, and how their all adored equally as if they were just normal children--because they really are. 

Oh how my heart just melts away observing and digesting it all.

However this time around Landon isolated himself from the other kids, he focused more on the visualized things around him, such as, pictures on the wall, textures and some of the craft tables.

His OT shared this video with me from Thursday.
See he's making his Mommy a Valentines Card!! 

Although he became very resistant and fussy when I tried directing him to make some crafts. He seemed more happier just walking and venturing throughout the room, so that I allowed him to do.

In all I enjoyed the morning with My Funny Little Valentine!! 

"Sometimes even the greatest joys bring challenge, and children with special needs inspire a very, very special love."

-Sarah Palin

A Little February Funny

I have a little funny to share....which is honestly a BIG Funny to Me!

So Landon knows how to open the all the doors in our home, with the bathroom being his favorite pick of course, considering he knows how to turn the water on. Most times I go in after realizing his in  there get him out and sometimes I allow him stay just to play in the water. Lately while in the bathroom he's been taking his /our toothbrushes out playing with them, sometimes he'll sit on the edge of tub and brush his teeth.

Cuaght red handed!!!
Taken 1/17

However yesterday he did all of this but this time I noticed he had Anesia's toothbrush in his hand this time. I remember seeing him brush the dresser {yes my newly resurfaced dresser} and me telling him to give it to me, but then after that draws a blank.

Needless to say this morning I remembered when I went to brush our teeth and I told Anesia to get a new one because Landon had it last. She went to ask him "Landon where is my toothbrush",  he replies with a "hummm", she says again, "Landon wheres my toothbrush",  he replies "MaMa" and burst out laughing!

Caught again!!! Messing!
Taken 2/8

Of course I did too--so shes like Ma, stop laughing its not funny he probably put it in his pot or the hamper--as the hamper has also become his go to place to get into something. He pulls all the clothes out then throws something else on there.

Ohhh boy I'm still laughing! I told her that might be your karma for always blaming stuff on him,  knowing he can't speak to defend himself; payback is something!

This is one of many funnies that bring JOY to us!! Although he can't talk like a normal toddler his age, its clearly obvious he understands well.

Currently all his words/sounds are:
"MaMa, Ba-by, Bye Bye, B-B, Hummm, DaDa"

His teacher often says he says or makes new sounds but I havnt actually heard any just yet.

#TheseKidsGiveMeLife
#LifeWithLandon

~So many tangles in life are ultimately hopeless that we have no appropriate sword other than laughter.~

Gordon W. Allport

February is RARE

As it seems this the month of RARE--think about it like we have leap year every 4 years. This is also the month to share & acknowledge people living with a Rare Genetic (Disease) Syndrome; as I prefer to call it (disease sounds nasty & scary--just my opinion).

As we know there is so many different syndromes and diagnoses that have been considered  rare that are celebrated on this day.

What is RARE Disease Day?

Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.

What is a RARE Disease? 

A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time.

• 50% of rare diseases touch children.
• Kleefstra Syndrome has about 300 cases worldwide

For more information on RARE Day visit www.rarediseaseday.org 

For more information on Kleefstra visit http://kleefstrasyndrome.org