Tuesday, April 6, 2010

Rolling with Ryan - Eyeball, Mario Kart, Exercise, Going with his flow

Our youngest son Ryan attends an amazing preschool that specializes in working with children with various learning disabilities.  The school just celebrated their 20th year and Ryan's teacher and her assistants are amazing and have the patience of saints.  Many of the boys and girls are autistic however from what I've seen when visiting the school, there appears to be quite a variance in ability level, socially, academically and physically.  Some are verbal, some are non-verbal.  Some are potty-trained, some aren't.  There are specialists on hand for physical therapy and speech therapy.  Amazingly, this is a public school!  (Treating ASD can be very expensive and we feel so blessed that Ryan qualified for this school after graduating his Birth to 3 year program last June.)



One universal truth about the autism spectrum is that it is indeed a spectrum disorder.  If you meet one child or one adult with Autism or Asperger's, they are not going to present in the same way as the next child or adult on the spectrum.  Although there are some similarities, there are often more differences.  This is especially true with the different genders, a fact which many believe has a correlation with the ratio of female versus males being diagnosed.

When I attended a seminar last summer at the Autism Society of America conference in St. Charles, IL, one speaker (I don't remember who now, sorry) said that oftentimes children on the autism spectrum have more similarities to their neurotypical peers than they have with each other.  We are all individuals. I do get this fact.  However when trying to describe "What is Autism" or "What is Asperger's Syndrome" to friends, family and strangers who are not all that familiar, it is a bit more complex for them to understand.  Often people have preconceived notions of what autism should look like or what its daily challenges entail.

In our family, what holds true for Ryan with his autism is often not true for Justin and his autism. What holds true for Justin and Ryan is often not applicable to me and yet we all do have some autistic traits or mannerisms in common.  We also each have comorbidities that likely tie in with the Autism / Asperger's. One of the most prevalent is Sensory Processing Disorder.

We have found it fortunate in our experience with the Washington state school system that an Individualized Education Program (IEP) is required to be set up for children diagnosed with a learning disability because it allows the parents, teachers, school psychologists and other appropriate caregivers to come together and develop a learning program where the student is most likely to excel and appropriate modifications are made.   These plans are required in schools around the country and we have heard for some that this is a nightmare.  

We have had an IEP for Justin the past few years and Ryan for the past year.  Although I'd like to consider us proactive parents in a school district that is progressive in working with familes of children on the spectrum, I'll admit, it took us over a year to get a hang of the whole IEP process and realize how much power we actually had in being advocates for our sons.  Once we truly understood what an IEP was all about and were empowered, we could then help take the reins in empowering our children.

Ryan's next IEP meeting will be coming up in May.  This was his first full year at preschool and because he has a late May birthday, he'll have another full year before he will be transitioned into a Kindergarten setting.  We're thankful for the extra year, not from the academic side but from the social side. 

Ryan is an energy beam at preschool with lots of smiles, lots of laughter and lots of what his teacher labels "the sillies". His natural inclination is to be in motion either spinning, bouncing, running, jumping or walking on tiptoe. Although academically he is ahead of his age group and has some amazing, savant like talents, there are other areas like being able to sit still in a school setting (calm body versus wild body), being safe (not bolting off), developing empathy (not laughing when someone is hurt), following directions and eating properly (not putting non-food objects in his mouth) where it is obvious that he is behind where a neurotypical child of the same age would be.

Today was a good day for Ryan.  My husband John was a chaperone on Justin's 5th grade field trip (hooray, John!) so it was up to me to pick Ryan up from the bus after school (easy since it stops right in front of our home) and watch him exclusively for the 4 hours until John and Justin got home.

Owning a business where I work from home allows me this flexibility, although admittedly, right now it is quite a difficult balancing act.  We work very long hours (albeit varied) and it is rare for John and I to get a respite break.  We did get a 3 hour date last month when our church sponsored Parents Night Out and it was our first since last August when we were in California visiting my parents.

That's not meant to be a complaint because my children are amazing.  It's just a fact of life at this point in time and over the next couple months, I'm going to try and do some rescheduling, reprioritizing and reorganization to improve all our lives.

Well, I've digressed.  I meant for this blog posting today to be primarily about our rambunctious, colorful, amazing "Ba Ba" Ryan but in typical fashion, a tangent (or two or three) distracted me.  If you only knew how hard it was for me to actually write one of these blogs....  I have an annoying perfectionistic tendency to want to go back and rewrite, edit, insert and make each blog perfect.  In fact, you never know what version you might be reading.  Fortunately, I can laugh at this.  Sort of...  It's not so funny when I have other things I want to get accomplished.  Thank goodness I can type well over 100 words per minute.  In retrospect, Typing had to be my most useful class in high school!



Back to Ryan.  Today was a great day for him.  He came off the bus, waved goodbye to "bus driver Tom", made his obligatory loop around the lawn and then came inside for a rundown of his day, some bologna, some cheez-its, some of Gram's Snickerdoodles and a few games of Mario Kart "Coin Runners" where he proceeded to kick his Mommy's butt despite the fact I'm fairly hip and cool with the wii. 

I then decided that for the next few hours I would join him in his world and do anything he wanted.  It was spectacular.  We played "EYEBALL", one of his all-time favorites.

I don't even know if there are words to describe this amazing game.  Someday a video will have to assist me.  It's a made-up fantasy land game played with balls of various sizes, shapes and textures and involves throwing, rolling, kicking, bouncing and shrieking random bits of nonsensical stuff like, "OUCH, YOU GOT MY EYEBALL" or "LOOK, EYEBALL RAN ME OVER!  DON'T DO THAT, EYEBALL!"  I kind of invented the game, Ryan named it and came up with most of the random quotes, Justin assisted with it, John questioned the sanity of those playing it but at the end of the day, anyone who plays "Eyeball" at the Krejcha family home is better for it. 

We also did exercise and physical therapy.  Although I'm trying to lose weight, Ryan's insistence that each activity contain 1000 reps made successful completion a little challenging.  I'm working on it but 279 is the best I can do right now! 

At one point in the day, I dared to quickly take a bathroom break.  This was obviously a dumb move on my part because in a matter of seconds (yes, SECONDS), Ry was out the door (it was locked), with no shoes, no socks and on our grass grabbing a clumpful.  Fortunately, I of lightning speed (stop laughing, John) made it outside in time to prevent the grass entering Ryan's mouth.  Unfortunately, he was not willing to go inside without a fun, neighbor-amusing game of Mommy chases Ryan around the front and side yards.

Normally I'm not one to bribe, although I do believe in incentives but after a few minutes of "chase", I told Ryan that if he went inside and got on shoes and socks and doggy backpack (with a tail for Mom to hold), I would take him on a walk to the park.  That worked and we had a wonderful time on the slide, swings and enjoying each other's company and practicing safety rules. 

The topper of the outing was an inpromptu hug and "I Love You, Mommy". 

Although I was exhausted when I got back home and wasn't quite in the mood to work, although it always has to be done, one of those "I Love You, Mommy" declarations will keep my batteries going for a long time!

Have a great day / afternoon / evening!  Thanks for stopping by!

As always, I really do appreciate your feedback.  Anonymous is always fine!

Karen

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