Kennedy Krieger Follow-Up Visit

Thursday, October 30^th our follow up visit to KKI had arrived, one whole year has gone by seemingly fast.

The morning started out early, we had arrived in good timing, which I had hoped for.

Peep the "napper"!

We arrived so early we were able to sit; Dad was able to catch a nap, I was able to feed Landon some breakfast and played some temple run and but of course snapped a few usies … #smiles.

As the hour went by, it was now time to get down with this appointment. We checked in, and had a seat while waiting to be called. We started out with Landon having a vital screening and we were prompted to await the doctor.

While we waited he took a few scrolls back and forth throughout the waiting area, peeped in the toy box, played with a few toys and eventually ended up playing shoestrings with Dad…right until the door opened and the Dr. announced “Landon Greene”.

We all got up and walked towards her, greeted and followed her. As we were following her lead she stated “He’s walking now, that’s great”. Moving along with the appointment, she started out with some follow up questions, inquired about the status of connecting with John Hopkins, which I had explained; fell through to due to non-insurance coverage. She then moved right into some instructional play with him to see what he could articulate and comprehend. They did this repeatedly using different tactics such as books, bubbles, fine finger grasping with small object items, imitation, and receptive play.

She continued to ask us questions on our thoughts with his progress and what were some goals we would like to see him accomplish.

She also inquired his recent status with schooling and as I informed her he was currently attending public school full-time, in an Autism structured-class, she stated that was a good environmental setting for him and recommended that he remain there.

As she was starting to wrap up our visit she expressed her interest in another evaluation. She stated she wanted to be clear with his current diagnosis before she added on another one. She continued with saying while current flags of autism are present she wants more time to evaluate and watch his progress considering the delays are caused from Kleefstra. She also recommended that we continue with all current settings and programs as she sees much improvement since initially evaluating him one year ago; however, developmental wise she placed his growth at age of a 1.5 year old.

So needless to say there was NO diagnosis determination made!!!

How do I (we) feel about this?  Dad and I agreed that we were comforted knowing that she wasn't a doctor who was quick to place a title on a kid. That she showed interest in learning more about Kleefstra and that she’s passionate in her field with accepting and dealing with each case as needed. She appeared to be vested in making an appropriate judgement accurately--and for that I'm grateful for her time, regardless how many times she requests we follow up.

Where do we go from here? Well only time will tell. All of Landon’s progress depends on what Landon wants to interpret and achieve. I feel as his mother I’m assuring he’s receiving all the proper services he needs, so with that, he will continue to grow stronger developmentally and physically daily. Meanwhile we will wait out next visit. And continue with regular care.

How’s Landon been adjusting to school? So far so good. Landon has always been capable to letting someone know when he doesn't want to do something. There are some days he has challenges going up and down the steps, but his teachers and other staff has been helpful with assisting him when needed. His PT Therapist recently recommended and requested he receives an full- armed supported seated chair to assist with him sitting in the chair correctly, as he slouches when sitting on the benches during lunch time. And I’m currently waiting on feedback for his Assistive Technology communication device. His teacher and I recently meet and she recommended that I get rid of his sippy cup, pamper usage and use pull-ups only, and start incorporating a picture communication system at home. She said overall, he has adapted quickly and faster than she expected.

"Progress lies not in enhancing what is, but in advancing toward what will be" 

Khalil Gibran

Today's Note

"Landon had a good day! Today Landon did a nice job imitating clapping hands, patting and waving during morning meeting. Today Landon had speech. Landon is in the beginning stages of using PECS {Picture Exchange Communication System} in order to communicate his wants and needs.

This was the note his lead teacher wrote in his book today. I enjoy reading his daily progress notes. One of the simple things I miss from Easter Seals, receiving the notes from his therapy sessions. However that process is slightly different here at Langley, we don't recive therapy notes, but we do recieve daily notes from his teacher--which is my new "Good Read of the day".

Far as PECS, I have been doing some research on this lately since it was brought to my attention from one of the SPED teachers and I'm very interested in learning more to help assist with his communication needs. I had said a while ago I was going to work on a new project by creating a picture system on the refrigerator using velcro, never knew there was an actual name for this system. I also came across some workshops for parents and/or educators I'm interested in and is planning to take next year; definitely looking forward to that.
For more information on PECS visit:
http://www.pecsusa.com/index

On another note we will be visiting Kennedy Kreiger this Thursday for our follow up appointment.

Signing Off,
Landon's Advocate aka Mommy

"We are all born with great potential. Shouldn't we all have the chance to achieve it?"

--Kennedy Kreiger Institute

Who's Here?

Today Landon was responsible for bringing the attendance to the office. The lead teacher called to warn me before he arrived, so I went to stand behind a closed door where I could just watch. Well he walked into the office smiling from ear to ear, holding the attendance folder firmly as he walked up to the tray where it supposed to be placed and dropped it right in.

He needed a little assistance reaching
 the tray this time...

One of the teacher aides was with him and she congratulated him on doing such a awesome job with being responsible. But the funny thing is while he's being responsible he still wants to check on his mommy.

Meanwhile, I'm standing back there but ducked to avoid him looking in my direction as he's walking around with his loud little stomp towards my area {where the orange paw is}. I'm peeping at him as he has this look like "where is she", he turns the empty chair around as if I was going to appear. He then looks around like "y'all know where she is". His teacher calls out his name, as he turned around he seemed a little upset. But he proceeded to move towards her.

Coincidentally she let him do it again, she grabbed the folder back from the tray to hand it back to him, and again he responsibly placed the folder back in the tray....

BAM! He got it!!

Which is where these great photos came from!!! 

This time once he was done, he nicely turned around with her and proceeded out the office.

Now imagine how overjoyed I was with witnessing such an achievement for him; as this was only his second time at this task and he did a magnificent job and HE owned it! 

I swear MY BOY sure knows how to BRIGHTEN such a Dull Day!!

.

Thumbs Up for Therapy

Today was Landon's normal day for his Monday evening therapy session at HSC Pediatric Center, which Dad normally takes him to and I meet them there, if I make it or just see them afterwards. However, Dad wasn't able to take him today, so I did.

As we arrived we had a seat, only for Landon to initiate the shoe-string game while we were sitting. He eventually stopped and got up to start walking around, right before his therapist came in to get us. As we headed around to the section where they normally hold his session, she needed to run back to get something. So we continued on to the area, but on the way we have to walk through this long hallway which he always stops to (what I think) stare at the elevator. So I figured what better time to pull out my phone and snap a photo! And what a great capture it was, as it looks like Landon is giving "Thumbs Up"!

But the truth behind this photo is he wasn't, he was actually standing there staring at the elevator as I stated while stimming (self-stimulatory behavior, also known as stimming and self-stimulation, is the repetition of physical movements, sounds, or repetitive movement of objects common in individuals with developmental disabilities, but most prevalent in people with autistic spectrum disorders); which is what I call "Happy Hands".

While we're moving forward into the therapy session his therapist mentioned she wanted to try him in the leg wrap (proper name Hip Helpers Support Shorts) today, so I follow them to assist with removing his pants, changed his pull up and she assisted with putting him into the wrap. Normally Dad & I step off to keep from distracting him while watching. So he's in the wrap and he's ready to take off--of course not as fast considering his legs are tightened together. She mentioned that these are made for correcting his thigh area with balance, some closure and better coordination when he's walking. But of course I immediately start to laugh because they remind of spanks--of course you know what I did next...snap, snap!

I eventually moved out of the area as he started to stimulate more on me walking up and down the stair-steps with him, then he did with doing it himself. After this session was over they walked to where I was sitting and his therapist give me the run down of today's session. She stated how she was very pleased with him this evening as he remained engaged with the activities. She also gave me a list of goals she created for him, which are:

LTG1: Landon and his caregivers will demonstrate compliance with attendance and home exercise program as provided by physical therapist, ongoing.

LTG2: Landon will amb 150 ft with appropriate BOS  and step length and without LOB or falls, processing.

STG2a: Landon will amb 50 ft with appropriate BOS and step length and without LOB or falls, progressing.

LTG3: Landon will ascend 4 stairs with 1 railing demonstrating reciprocal stepping with supervision for safety, progressing.

STG3a: Landon will ascend 4 stairs with 1 railing demonstrating step to pattern with supervision for safety, progressing - use of B handrails, requires assistance for proper LE form.

LTG4: Landon will perform floor to stand transition independently without UE support, progressing.

She ended with saying he has made a decent progress and she request that  I add/edit to the list of goals as needed and share with his physical therapist at school as well. And lastly we discussed purchasing some personal Hip Helpers as I mentioned would be helpful to have him use at home while he's moving and walking around.

These are the moments in the world of Special Needs that pleases us, just hearing how your baby has made some progress. But what would our world really be if right after that we get home, I prepare his dinner, put it on his chair top and he starts to eat independently to eventually start throwing, first the fork, then the food!!!! Yikes! Now I have a mess to clean. 

At the end of each day, whether it was a sweet smooth sailing one or a wild & rough day I wouldn't trade this journey for nothing; because it was made just for US!

'Tis the set of the sail that decides the goal, and not the storm of life.

-Ella Wheeler Wilcox

1. 
   

Schoolin' Coolin'

Check him out, with his book bag...
My Baby is becoming a BIG Boy!

Tomorrow makes 3 weeks since Landon has been attending school and so far he's doing very well. I've been getting excellent feedback and comments on him adjusting. Although he's not always so eager to voluntarily walk off with one of his teachers in the morning, but he goes with a little bribe.

The funniest thing is it's amazing that he knows where I am. At any time his class may be heading outside or back inside he's trying to peep in the office. One day he was the chosen one to bring the attendance around, as they are learning independence and responsibility; although I had assumed they would illuminate him from that process considering I'm in there. But here he comes, all I heard was "come on Landon" looked up to see his lead teacher was standing in the door way giving me the "here he comes look" and there he was walking up with the attendance folder in his hand. So I quickly ducked, all for them little feet trying to stomp around towards me. However he was intercepted, turned around and boy of course he wasn't happy about that. 

Sometimes I wonder what he's thinking since he isn't able to tell me. I wonder does he know that his environment has completely changed, that he's in a new building with new people. I wonder who he may be missing from Easter Seals. Often times I'll lose myself in thoughts of thinking what he may be thinking, what he may want to say, but knows he can't. At some point I bring myself back from those thoughts and appreciate the now. 

Standing checking out the scenery....

Currently he has been making more sounds, "ma ma", "ba ba", "be be", "bye bye" just to name a few. The most recent sound was "sti sti" after me telling him he "stink stinks". And I swear he tries to mimick me when I yell "Nae", he repeats it and yells "Naa". 

This Wednesday my baby will be going on his very first school trip to the Punkin Patch. I have arranged for his Aunt to chaperone with him, as I'm a little concerned how he may act. And unfortunately I didn't want request leave to attend, I figured I'd wait since I'm already scheduled to be off the following week for our follow with Kennedy Kreiger. But I will defiantly be attending a future trip.

I'm still in the awee moment that we've reached this phase of our journey. But while there so much improvement with his progress there's still things he does that lets me know we're not in the clear. Friday we came home and my nieces we here, ages 4 & 1 and for the oddest reason he immediately became tensed and clingy.  As I know Landon isn't a peer play seeker but chooses to gravitate towards adults, you would thought he never seen them before. And of course the oldest one doesn't understand so she continues to try to play with him but he just try's his best to avoid her and get to me or Sissy. He ended up falling asleep after I put him on the bed to watch tv, as if he didn't want to do anything else as long as they where here. That made me wonder how he interacts with the 2 kids in his class, which hadn't came to mind since I hadn't heard otherwise; but will definitely be asking tomorrow. It kind of makes since to me why he
seeks play from Anesia and even his older cousins, because in his mind they are big people.

Water Play...his Favorite!
One of his teachers shared this with me Friday.

"Every child has a different learning style and pace. Each child is unique, not only capable of learning but also capable of succeeding"
-Robert John Meehan

The Birthday Clubhouse

Sunday was nothing but SPECTACULAR!!!

For the last 4 months, which seemed like forever I had been planning and preparing for not only the Autism Walk but also Landon's Birthday Party.

A capture of the setup....

Initially I had thought we'd do something simple like a indoor pool party since he loves the water. But almost immediately after June 24th; the day Landon started walking independently I knew I wanted to throw something BIG!! I wanted this celebration not to only acknowledge his birthday but to also acknowledge My Boy had accomplished something so simple and expected to some, but something so freaking major to us.The theme came easy simply because he adores Mickey Mouse Clubhouse, but of course I had to give it some funk, so I requested all boys to wear bow-ties and girls to wear tutu's.

I had started goggling all DIY Mickey Mouse projects from making the ears to cake ideas, food menu & names and decoration ideas. I felt like since I started planning so early I would be ahead of my game came day before party day. Well, I wouldn't be me if somewhere I  hadn't gotten overwhelmed from trying to master this all alone with no help, that I eventually was scrambling. I however was lucky enough that my daughter, her bestie and my niece was able to jump in and help a great deal that night before the big day. Boy I didn't even go to sleep until after 4am' that day. The day of, I tried to get a few hours of sleep but had to cut that short knowing time would fly by. I had to make the sandwiches, needed to make a final store run to Costco to get the Mickey Mouse chicken nuggets and a few other items but nevertheless, between time catching up, having to pick up the cake and still meet the guy to open the center.... I never made it. Once we where in we started to set up, I had my sister meet the guy just in case I was late so she was there to assist me and my cousin meet us and joined in. The entire time I'm saying I gotta get my chicken nuggets thinking what's a Mickey Clubhouse Party gonna be without them? Next thing I know it was just about 3 o'clock I knew it was out of the question now. I still had to get home to get dressed and get Landon dressed, which Dad ended up doing. Coincidentally while I'm walking out to head home to get ready our first guest arrives and not only that, the cartoon artist was in route as well. 

 I got home and started to get ready, meanwhile Dad,

The cartoon artist at work...

Landon and my other helpers headed on around. Finally Mommy of the Clubhouse was ready and headed out the door to get the party started.

Moving along..... I got there and was in total awe that the room looked amazing and we had more guests. The cartoon artist was setup and sketching one of the kids--so we were in official Clubhouse mode! Eventually after some time Auntie Streamer the Clown & Company had arrived, they were there to do a puppet show, face painting, balloons, and had Mickey & Minnie especially for Landon. However, he wasn't to excited about seeing them when they came out but he wasn't to scared where he cried either.

Our Family "G5" in our Clubhouse Gear!

I can definitely tell he wasn't to comfortable but he remained calm for the most part and just looked at them perform. They even made him apart of the puppet show. 

In all I was absolutely honored that the party turned out to be such a success, it was obvious all the kids were having fun, the adults were mingling & enjoying each other's company, Dad was socializing while backing me with assuring everyone and everything was flowing and the entertainment was on point & defiantly the party booster.

Our  Boy was Clubhouse Cool!!!

By this time Landon was just exploring the room in its entirely while also being pulled by this person and that person, but not once did he fall out with a behavioral tantrum or cry, my baby was just walking around owning the event and Clubhouse Coolin'!!!

If I do say so myself, KUDOS to Me & Dad for hosting A Super Cool Clubhouse Party!!!

Daddy & Mommy of the Clubhouse!

A Few Special Shout-Outs ..... as they provided Awesome service & products to assist in making Landon's Birthday Clubhouse the BEST!

Customized Mickey/Minnie Shirts:

IG @ deedee-_tutusnthings

FB @ DeeDees TutusNthings

Landon's Customized Mickey Bow-tie:

IG @ chocolate_diva80

Esty @ kkreations2011

Printable Mickey Clubhouse  Party Favors:

http://greatfavors.com/

Cake & Cupcakes: 

Personal Local Baker (email for info)

Langley's Newest Tiger

Whelp after awaiting what seemed like forever...today confirmed the transition from Early Interventions to Early Stages was finally official. Landon started his first day at Langley Elementary School. He is an Autism class with 2 other students, a lead teacher and two educational aides. After longing for this day to come for the last three weeks I was so excited and ready to stride within this new stage of our journey. The morning started out perfect, he was in a good playful mood and even walked into the kitchen to motion for some bread. I guess he wanted a early breakfast for his Big Day.

Let me eat my Bread please...

The commute ended up being a little pushy as I would have run into some traffic but we made it on time.  Since my tour of duty starts at 8 and school doesn't officially start until 8:45, with 8:15 being the earliest a teacher can accept any students,  I had to keep him with me for a bit. I figured I'd keep him energized so we walked around the halls, until I eventually had to go to my desk.

Soon after one of the aides informed me that I can now bring him around. We walked hand in hand to his class and of course he got clingy the closer we got. As we walked into the class he loosened his grip a bit and released my hand and started his exploring voyage in his new class. 

I stayed around to assure he settled comfortably and was able to capture a few pictures of him. I moved onto my grand exit after seeing he was comfortable and on the move. 

Ummm...

Later I saw his class walking up past my area so I moved back to keep from him seeing me. I noticed he had on his hat; which he hates and takes off to throw any time he can. He was walking holding hands with one of the teachers just like a big boy. I had given his teacher advanced noticed that he would be leaving early today to attend a physical for his 3 year old check up. When I got to the class he was laying on his mat, napping. I asked his teachers how was his first day and they replied he did a very good job and you would've thought he had been there before. The lead teacher also mentioned that he seems to like imitation play very well. And that she's certain he will continue to transition smoothly.

Mommy I'm good....

Okay, so  I'm sure you're wondering by now why is he attending Langley when I mentioned he was placed at Seaton Elementary. Well, after sleeping and thinking how we could pull off me getting to work on time and him attending Seaton, which didnt provide any before care.  I contacted Early Stages and inquired if he could be switched to Langley, considering we offered the same Autism class where they placed him. I mentioned that Seaton didn't offer before care, I currently work there (Langley) and that I was eagerly interested in accepting the transition--but that was my only hiccup. I was told they would seek into the request and get back to me. Needless to say, they called me back within 10 minutes stating they could accommodate my request. 

Instantly I gave My thanks to God, because he made all of this possible!! This journey may have been unexpected for sure to me, but HE already had it planed and HE is making the way!!! How ironic is it Im hired within DCPS; working at Coolidge SHS after two school years, was facing an involuntary transfer near the end of the school year, interviewed and hired at Langley.... and fortunately now Landon is attending Langley as well. Nothing but GOD!!!!

 Back To School Night on September 24th...
Landon and Dad came for their first visit and meet & greet.

 It is good to have an end to journey toward; but it is the journey that matters, in the end.
 Ernest Hemingway

We Walked it Out for Autism

Today Team LRG Walked It Out For Autism!!

The day stared out great, I had got up started breakfast and was in an awesome mode for a Family-Friendly Funfilled Morning. I was pretty much prepared so I didn't have any hiccups and we even arrived on time to meet everyone; which was my biggest worry.

Although the morning was kind of windy and cool, on top of a few of our team members arriving late, which delayed us starting with the crowd. Soon after everyone had arrived so we were able to start. I will admit, I was just a little disappointed as I noticed that as many people didn't show as I expected--but quickly I reminded myself that I was grateful for the ones that did come out. And I realized that if this wasn't my personal journey I'm sure I wouldn't be here either.

Landon was super good, he rode comfortably in his stroller while grandad pushed him, no whining, no throwing, he just laid back and enjoyed the ride. As we were approaching the finish line we took him out so he could walk with us. Although I had noticed he did get a little bothered when he saw all of the people to the right and left of us loudly cheering us on as we were walking through, but he became settled after being picked up. And Team LRG excitedly walked through that finish line.

In all this morning was nothing short of what was most important to me; showering and 
supporting Landon with our love. And what 
better day then the day before he starts school.

Stay tuned for the post of the "Newest Langley Tiger".

I Am 3

Friday, October 3rd, Landon celebrated his 3rd Birthday.

We enjoyed an afternoon with cupcakes and ice cream; as we also said our Farewells to our Easter Seals Family. I figured we'd celebrate lightly since his birthday party will be next weekend.

I believe he had an Enjoyable Birthday for The Big 3!! 

But of course the Farewells were Bittersweet. We will definitely miss everyone from Easter Seals!!!

It's My Birthday I can do whatever I want...

Stair Stepping for the BIG 3!