Kleefstra Syndrome Awareness Day

Today is Kleefstra Syndrome Awareness Day!!!

{Photo created by compliments of a fellow Kleesftra Mom}

Landon was diagnosed with Kleefstra Syndrome just last September; after months of unknown reasoning behind developmental delays. As of today, I haven't been able to come in contact with other Kleefstra cases in my area; but I've been fortunate enough to locate many families via Facebook with Kleefstra kids.

Yesterday we visited the Neurology Department for our yearly follow up, since receiving the diagnosis and the doctor stated Landon was her only Kleefstra case, which further confirms the rareness of this syndrome.

I'm thankful for the relationships I've found via Facebook. It not only helps me better relate to dealing with this syndrome but continues to educate me as each case has it's severity of differences. As Landon's mother it's my duty to advocate, educate and provide awareness, as I learn each day myself. One of my reasons for me blogging, which is what I call "Expressive Acceptance" is for that reason. And it's where my vision of branding my own support group stems from. I figure I can be the voice for someone who doesn't want to speak, but needs to know and also provide a comfortable family orientated setting where we all learn to deal with our journeys together, because it really takes a village. Not only for Kleefstra kids, but kids with other special needs, rare genetic syndromes and developmental delays as well. Unfortunately the process with this vision hasn't been as easy as I thought (as I've already received my first denial) but I'm remaining positive and will continue to push to make this vision of mines come to light.


Below I have provided the verbiage breakdown that one of the Kleefstra moms provided for us to circulate via FB {w/photo above}on the reason for acknowledging Kleefstra Syndrome Awareness today.

"Why 9/17? Chromosomes are the structures in each of the body's cell that carry the genetic information that tells the body how to develop and function. They come in pairs, one from each parent and are numbered 1 to 22, each chromosome has a short (p) arm and a long (q) arm. KS is defined by anomalies on the Q arm (Q is the 17 letter of the alphabet) of the 9th chromosome. 
9/17 became the KLEEFSTRA Syndrome Awareness Day this year".


For more information on Kleefstra Syndrome visit www.kleefstrasyndrome.org

Playground Play

This past Saturday Landon and I attended our Playgroup session. We arrived rather late; as I had no plans on attending since I was kind of tired. But Landon had other plans with that thought, he had woke up early around 7:30ish and showed no intentions on going back to sleep--so we got up, got dressed and headed on out.

Upon our arrival we walked into a full class--with other regular families along with a few news ones were there. We started out inside; some of the kids were walking/crawling/running on the mats while others were playing with toys or in Landon's case wrapped around their mothers leg as if they were in a room full of strangers.

Prepping for the BIG slide...

The alarm sounded which was indication of moving outside, as we got ready and headed out towards the play area Landon finally lets me loose. He starts to walk out ahead of me like he was patiently waiting to go outdoors all along. He was so eager and excited about walking down the stairs, so excited he was skipping steps so I just picked him up. Once we got down he walked away from me and to my surprise for the first time walked towards the play area. I followed behind him to assist as he lead to the sliding board and up the steps. And of course I was camera ready!!

Look at Me, Mommy!!

While it's normal for a 35 month old toddler to initiate playground play, this is new for my 35 month old boy. As always my way of not causing distraction to him is trying to remain calm as much as possible, but my inside I'm roaring loud and my heart is so over-joyed with proudness. And seems I wasn't the only one proud of him for initiating play on the playground today, one of the playgroup attendants came over and assisted Landon as well with the steps and the slide and boy did he enjoy; eventually he wanted to stop and he did a great job with letting us both know. Next, we prepared to end our session and get ready for story time and our "good-bye" song, and while sitting there I 
couldn't do nothing but hold onto that huge smile inside my heart--well right until Landon started his 
fall out tantrum and pulls me all up {if you've seen this, I'm sure you can picture it right now}... And of course at that point I'm worked up and ready to go!!

In all we had a Awesome & Productive morning at Playgroup!

Check out my Crawling Caterpillar...

And while all that happened on Saturday, look what he did at school on Monday!! So grateful for the teachers and therapists who capture my unattended moments!! What would I do without them? Thanks Ms. Asia!!! 

Up...up...and away

Left leg go... 

Right leg go....

Aquatic Sneak Peak

Landon getting his vest on!!
He wasn't to happy about that.

In other news--today was Landon's first day for Aquatics Therapy. And of course I was pushing for time since finishing up with the review meeting. I called to inform them we would be late and was prompted to come on, as we were allotted a 15 minute grace period. As we arrived, Dad and Big Sis DaMari was awaiting us. I signed us in and seems I was informed wrong, we aren't allowed to use that grave period since the session for Aquatics is only half an hour. However, we proceeded to the session, we changed Landon into his swim gear and there he went. Of course this dude isn't afraid of water so he was all smiles heading up the steps to the pool as I guided him to the therapist arms.

He appeared to be happy and comfortable with the short time they worked. She was working with him kicking his legs while she's holding him under his back and gliding through him the water.

Check him out....Our Lil Swimmer!

I'm sitting watching in an awww, camera in my hand and ready of course. Dad is standing with all smiles watching and Sis is too. We're all enjoying the view of Landon doing such a good job, not that we thought otherwise--water wins him over anyday. I'm also preparing myself for the tantrum he is going to throw once she pulls him out, but luckily he didn't.

Today's session was Smooth Sailing. And I'm actually glad everything played out accordingly today, as this was the only session I was able to make since his session is scheduled while I'm at work. Which reminds me, I'll have to give Dad a prep talk about being the on-site photographer and staying ready for the snap a shot!

"So be sure when you step, step with care and great tact. And remember that life is A Great Balancing Act".

 -Dr. Seuss

Early Stages Part II -- The Review

After preparing myself mentally for this day. It's finally here. It seemed so long ago when we went for the evaluation and we received the appointment for the review. Dad and I had countless conversations about this and we pre-decided what we felt would be best for our boy. I had also been conversing with our Dedicated Service Worker from Early Interventions and the Director of Therapy at Easter Seals about the decision. And for the oddest reason I arrive there and guess who has the jitters--ME!! 

Landon wasn't needed for the review and Dad couldn't make it, thankfully it was already planned that our DSW & Director of Therapy would be attending. As we walked into the review room with all the staff who evaluated Landon, there became the jitters even more. The round table discussion started with a review of each report; Speech & Language, Physical Therapy, Occupational, Educational Assessment and last Physiological. I was forwarded the reports the Friday before so I had already read them to be ahead.  After discussing each of the reports here comes the documents that required a signature--as I received the first document to sign off, I looked to my left and right where I was in the middle of DSW and DOT and whispered "I feel like you guys are my lawyers and I'm awaiting your recommendation", we all laughed. By this time I'm feeling quite comfortable and my impatient thoughts are festering, thinking....just get to what I want to hear, what does my baby qualify for.

In short, each of the evaluators qualified Landon to continue receiving his same services--OT, PT and S & L. Next, I was forwarded a drafted IEP (Individualized Educational Program). I had only a few add-ons in addition to what they had drafted, which was actually written well. I voiced a few of my concerns which were controlling Landon's behavioral habits of throwing and hitting. And we discussed some ways to redirect him when these habits occurs. 

The Finale--well according to the category they placed him in according to his disability is OHI (Other Health Impairment), he will benefit from being placed into a "specialized instruction with an outside general education setting-Autism class" meaning he will be in a detained class with fewer students (it was said he makes the 6th student). While it's clear he HAS NOT been diagnosed with Autism Spectrum Disorder, but because Kleefstra underlines so many ASD traits, this is a suitable match for him. And the school he was matched with that can accommodate these services for him is Seaton Elementary. Although I was having some hope that he could've been placed at Langley, where I work so we could have a one stop shop during the day--wishful thinking right? Moving back to reality--where is this? What are my options if this school doesn't work for him? Blah, blah, blah!  And the most imperative question I forgot to ask was, will this require him to graduate on a track certificate and not with a diploma?? Deep Sigh!! I'm hoping this is something that can be changed according to his future progress. I have so many ill feelings to that situation; but according to my research with graduation requirements this is something to be determined and decided best upon the child's ability to complete requirements for graduation.

While it was much concrete that we would take the Extended Option and allow Landon another year to progress, especially considering if he were a normal toddler he wouldn't start school until next year anyway. But now with taking into consideration the structure he can receive from a smaller class setting, and more specialized instruction, this might not be such a bad choice to consider. We have officially 28 days (with weekends included) to make a decision. The down side to this is, if we choose to transition with Early Stages we can't go back if we're dissatisfied; but if we opt out the transition with Early Stages we can choose to opt-in at any time if we wanted. 

Decisions. Decisions. 

#ThisIsTheStruggledTimesWithSpecialNeeds

Hello September

Hello September! Welcome.

Well it's been some weeks since I was able to make a post; between the start of school and every day responsibilities and moves you don't realize how time gets away from you. 

This post will include some updates and photos.

Landon sitting ready in his new wheels!
TeamSwifty!

As we know Landon has been walking independently 2 months now and oddly enough we're still in a "awwwee". We finally just had an Assistive Technology evaluation back in July. The purpose of that evaluation was to determine if Landon could benefit from any communication and/or other devices to assist with independencey and performing any tasks that he may be incapable of. Fortunately we had already been seen and fitted for new equitment {bath seat, stroller and new AFO's} sometime ago, that we just received 2 weeks ago.

Close-Up of the New Cool Superman AFO's
(Yup he bent them already trying to take them off)

These AFO's requires new shoes...
#deeplongsigh #thisisthehardpart 

Bubbles of Fun....testing out the new bath seat!

Following the AT evaluation, last week he started land therapy and will start aquatic therapy this week.  Land therapy is held for one hour, once weekly and aquatic is held for half hour, once weekly as well. The two of these will help incorporate better balance and coordination with his walking. And both are held at the HSC Center instead of school.

Speaking of therapy at school... Landon has recently been assigned both a new Occupational & Speech therapist and unfortunately had to say his farewells to Melissa and Manisha, as they both are heading out for new adventures--we will miss them dearly. But fortunately he welcomed back Negar this week!!! I have to admit we're forever grateful to the three of them for assisting with Landon's progression and development during this journey! And for that I'm forever indebted to them!!! They 
have all not only been amazing with him, but with assisting and coaching me to tackle the roads 
within this phase as well. 

Landon & Manisha getting their Farewell Selfies on!!
(His previous Occupational Therapist)

Landon & Melissa! He always gave her sugars!
(His previous Speech Therapist)

Landon & Negar!!! As you see he knows he's her baby!
Glad to have her back!!

In other news, Dad and I have talked and is highly considering taking signing classes to assist with keeping Landon encouraged to use his speech by signing. He has actually been verbally saying
 "ma-ma" and "da-da" lately, and as excited & applaud I am to hear him say this, I'm still not sure if he's associating the words with us. The mother in me think he is, but I'm still being patient.

Lastly, welcoming September in using this time to prep for some Team LRG Fun!! With his 3rd Birthday and the Autism Walk approaching in 5 weeks....can you say this is gonna be one exhausted Mama!!! Is all worth it #smiles!!!

I think that covers a light snippet of some of Landon's updates.