Walk It Out For AUTISM

Walk It Out for Autism – Year 2 w/

“TEAM LRG”

Sunday, October 5th @ 8:30 AM

National Mall

Registration and Resource Fair opens @ 8:30am

Walk starts @ 10:00am

Registration Info below: 
*Early Registration / Donations Welcomed *

http://www.walknowforautismspeaks.org/dc/teamlrg

Thank You in Advance for your continued Love & Support!!!

Splash Down Tuesday

We took Landon to the spray park today down at Turkey Thicket. Dad stated that was going to be their plan for today with the thought that I was suppose to attend a Leadership Team Dinner; that I actually didn't have too. And since Dad had already planned to start his clients at 7, I figured what better time than to go together.

Anyone and everyone that knows Landon, knows this little boys lives to play in water. As we were all walking and had approached the recreation center he saw the pool through the open door and was immediately drawn in. Dad had to quickly pick him up and we continued our way down the walk path until we reached the spray area and it was a done deal!! Landon was anxiously excited as he was placed down to his feet, he looked at us with that funny little grin of his, as his way of asking our permission to head right into the water.  There were a few other kids out running back and forth but of course in Landon's mind it was only him, us and the water. He paced backed and forth through the sprays until he eventually feel to his knees to smack and splash in the water.  Dad went over to pick him up and bring him closer to the center of the water and down he went again. As the water keep spraying on and off, off and on again, Landon sat there as happy, comfortable and content as he could be. He would look up at us, smile, wipe his face and make that silly shy-full grin and would start winding his hands with excitement. One of the kids came over to sit in the circle of water where Landon was sitting and out of no where he started loudly babbling, I figured he was telling the boy to get out of his space, because when the little boy got up, he stopped babbling, he smiled and started again with the his "happy hand waves".

But the longer he sat there the more I was thinking how are we going to get this guy out of here? But fortunately when I leaned in to pick him up he didn't put up a fight, so I gave him a few spins around and through the water just in case. But to my surprise when I did put him down, I said "Bye Bye" and he repeated "Bye Bye". I was so proud and please with him for not throwing a fit and he even walked all the way to the car until we had to cross the street.

This evenings Splice Splash was GREAT!

Check out the photos with me & Dads Shadows...how ironic...I Love It!!
Landon is the LIVE Shadow of US!!

Support Group

M.A.R.C.H.H

"Making Awareness Reach Challenged Hearts & Homes"
{Where Strength, Power & Courage Collide}

  

Educate. Advocate. Inspire.

Further details coming soon.....!!!!!

Sleepless Nights

I have been wanting to share this for quite a while now, but for some reason I kept holding off but; here goes….

Before Landon was diagnosed with Kleefstra Syndrome, I started noticing he was having major sleep interruptions throughout some nights. Of course it was no consistent pattern. But they started occurring pretty regularly. Some nights he would sleep well through the night with no interruptions; but other times he may experience multiple interruptions. Coincidentally after he was officially diagnosed I learned sleep disorders was one of side effects of KS. I notice when he wakes up he seems to be half asleep, but he tends to become distressed and can become overactive with his behavioral; he will start to hit, smack, pulls or pinches your face or sometimes he'll just cry for long periods at a time. And this only happens when during the night, not at nap time, which is even more weird. I personally have been trying to avoid mentioning this to his pediatrician because I fear the fact of him possibly being placed on sleeping medication. However, the flip side to this is it causes me to be extremely tired, restless and possibly irritable the following day. And even throughout the night while this is occurring I find myself becoming highly frustrated because I am tired. This sometimes causes me to yell or attempt to pop him because my reflex has naturally kicked in (I’m only human). Then after realizing that he isn’t the blame and he's definitely unaware of his condition I feel horribly bad and I immediately apologize to him and begin to pray.

So today is one of those days where I'm extremely tired because he woke up numerous times last night. Not only do I feel bad because I'm tired but I know this only affects him as well. I did inform his teachers he may be cranky today and should be looking forward to nap time. Far as me, luckily although I'm only on my 2nd day at a new school, it’s not too busy or overwhelming just yet, so I'm quite comfortable. However, I do have a training class this afternoon and I hope I'm able to keep my eyes open.

As you could imagine this is one of the "Unfortunate" side effects to this Journey--but WE remain POSITIVE!!!!

Our Evaluation Experience with Early Stages

Heading out for My Evaluation...
Today is going to be GREAT!

Monday, July 7th had finally arrived--Landon's Evaluation Day.

This is the first step to switch from Strong Start Early Inventions to Early Stages within DCPS (District of Columbia Public School). I have been dreading this day since being notified this would be the next phase since Landon will be turning 3 years old in October. It's been much of a struggle trying to finally gather some understanding of the IFSP (Individualized Family Service Plan), so the thought of switching is far more taunting that I can explain--or maybe I'm giving this too much thought.

The evaluation consisted of a team of 6 for multiple assessments, which included:
Vision & Hearing Screen, Educational Evaluation, Psychological Evaluation, Speech-Language, Physical Therapy and Occupational Therapy.

Each evaluator had a series of questions pertaining to his strengths, weaknesses, his current ability to be independent, how he interacts with other kids, how he interacts with his sisters, self-feeding, gait-trainer usage, potty training status, how he sleeps during the night {which isn't always good due to sleep interruptions and is another post itself}, etc. And each evaluator also did different assessment activities with him to see how well he comprehended, such as; independent walking, acknowledging his name when being called, walking up the stairs and attempts to walk down, putting balls into the ball shoot, independent play and fine finger grasping just to name a few.

I will admit while the evaluation was long and intense it wasn't quite as overwhelming as I had assumed, other than the feeling of being so closely monitored and analyzed as his parents. I told them I kind of felt like we were being evaluated by CPS (no disrespect), especially how Dad & I were sitting in separate areas. I was sitting inside the room with the evaluators and Landon, while Dad sat outside the room to finish answering more questions from our Family Care Coordinator, which had actually happened by coincidence.

One of the evaluators inquired if we used respite care, which I had informed her I had no previous knowledge of it but recently it had been brought to my attention and I was currently researching information. I did in turn inform her that I was also currently awaiting feedback from my Dedicated Service Worker about my Assistive Technology request, which was something else that was brought to my attention.

Unfortunately, in my opinion I've noticed the experience of raising a special needs child is best taught by trail & error and networking. Luckily enough I have been provided lots of information from the playgroup staff alone and for that I'm grateful. This is one of my reasons I'm eager to seek out my vision and brand my own support group, to become a vessel and advocate assistance for other parents and families going through this journey.

As we began to wrap up the last of the questions & concerns and which the evaluators had completed all the assessments they needed; I was given necessary paperwork and our review date. The evaluation ended up lasting about 3.5 hours, by this time Landon was whinny, hungry and tired.

Now that we're done with that phase, I'm anxious for the review date to arrive which has been scheduled for September 4th; to see exactly what Landon will qualify for. Meanwhile I'll be trying to decide if I will choose to take this option OR the newly appointed "Extended Option" that Strong Starts Early Invention has implemented. And sad to say, I'm still awaiting complete verbiage information on that {{shrugs shoulders}}!


Below are photos and a video I was able to capture during the evaluation.
#Enjoy




open .... close.... playing with the activity tower...

checking out the books....

 

taking a stroll to observe the play room...

 

 He was trying to pull the chair up with his leg,
to sit at the table...
 I turned to Dad and said "check him out"!!

 

As we pulled up home, I turned around and this happened...
that baby had a long day!!

Happy Independence Day

Happy 4th of July! Red, White and Blue!!

We hope your day was FESTIVE, FUN & SAFE 

celebrating our country

 and 

our Independence!!!

{Landon getting his INDEPENDENT walk on!}

{Landon walking with INDEPENDENT Pride!}

"Freedom is nothing but a chance to be better".  

~Albert Camusu

Otto Spaghetti' O

This was taken yesterday evening at dinner time. I had made chicken & spinach lasagna Sunday for us, but had given Landon spaghetti instead for his dinner. He has been doing such a awesome job with self-feeding. If he can eat something messy as spaghetti by himself this only confirms he is continually progressing in all areas. And everyone knows My Baby don't play when it comes to eating.

I found this information below from
http://www.babycenter.com/0_toddler-milestone-self-care_6503.bc 
Of course this is in stages of a normal toddler with non-existing development issues. And it notes:
**As the sense of self increases, so will your child's achievements in self-care. He'll naturally develop and fine-tune his motor skills over the next three years to master.
Using a fork and spoon: Some toddlers start wanting to use utensils as early as 13 months, and most children have figured out this all-important skill by 17 or 18 months. By age 4, your child will probably be able to hold utensils like an adult and be ready to learn  table manners. Until then be prepared to help out.**

So in our case, each time he shows any sign of improvement we celebrate and cheer him on along the way, because these are momentum milestones for us.

Way to Go Landon!!!

"ummmm goood"

"All growth depends upon activity. There is no development physically or intellectually without effort, and effort means work."

-Calvin Coolidge