Daddy’s day

Sickness always seem to plague any day dedicated to Tom. For the last two years on  both birthdays and Father’s Days, Sonshine has unexpectedly fallen ill, requiring a trip to urgent care. So, when Sonshine came home from school on Friday with a small case of the sniffles, I knew I couldn’t take any chances. We celebrated Father’s Day yesterday.

Sonshine, a bit tired, but ready to deliver Tom’s card

A nice surprise wake up call

Chocolate covered strawberries and a very cute messenger boy

Happy Father’s Day to the best Dad in the world.

(And no, we did not end up at urgent care today, although I feel pretty crappy and Tom has a tickle in his throat.)

Give it to me

Since Sonshine was about a year old we’ve been trying to get him to give us stuff. Not love or a kiss, but physical stuff. We wanted him to be able to pick up an object and then place that object in our hands.

It might seem basic, but when you have a nonverbal child that simple action opens a world of possibilities for alternative communication systems. Like, say, PECS. You can’t have a picture exchange communication system without the exchange part.

About a month ago, after Sonshine finished playing with his Pound a Ball, he turned around, handed me the hammer, and then crawled away in search of another toy. The enormity of that simple gesture didn’t hit me until several seconds later. To think that a physical object had passed from his hands to mine without prompting. At the time I thought it was another milestone in the works.

Fast forward to a couple of weeks later when I went to pick up Sonshine from daycare. His speech therapist was running late and while usually she is not there in the afternoons, she was that day. As I entered the room, I saw Sonshine sitting in front of her, pulling PECS cards off of a board and handing them to her in exchange for the toy of his choosing.

When I asked her about it, she told me that he’d been doing this since she started working with him in April, meaning this milestone is not a recent development. As my Mom would say, “what a little pill!”

Well, last weekend I read this post. For a long time we tried using Talk Tablet on the iPad, but we were never successful in developing the app enough to allow any sort of functionality. For one, we could not send it to school with Sonshine because he does not understand the concept of personal property and there would be no way to ensure security of the device. The second problem was that Sonshine never went beyond viewing the iPad as more than just a toy – probably because we were unsuccessful in implementing Talk Tablet into his daily life.

While I do not think Sonshine is age appropriate in his understanding of the world, we still need to give him options for communication. So, Tom and I hunkered down with PowerPoint printouts, a laminater, some scissors, and a whole lot of velcro for a few evenings to make this, Sonshine’s new PECS book.

This, of course, is a picture of the video and game page.

The nice thing is that it can go to school with him, allowing teachers to reinforce communication concepts that we use at home. And well, if cards get lost, we can just print them again. I will also be printing out ASL signs to paste to the other side of each page so that he has three ways to understand a word: by sign, by spoken language, and by picture representation.

I’m hoping that this book will help Sonshine recognize the power of words so that someday we can transition to a much more expansive system like Talk Tablet or another speech app. So far it’s working quite well. He seems to recognize that we want him to remove the cards and give them to us, even if he doesn’t understand what the picture means. That will just take a little time and patience.

But, for now it’s a start.

Mommy and sonshine day

On Friday, I pulled Sonshine out of school just because. Sonshine sure had a lot of fun despite being “sick.”

Graduation

Two weeks ago, I made the transition from being an intern pharmacist to a pharmacist. My career as a student has (finally) come to an end.

I’m not quite licensed yet, but I’m working on it…

In honor of ryan

Two and a half years ago, Sonshine was admitted to the hospital for a major infection. During that visit we met Carolyn and her son, Ryan. While we left the hospital with only short visits between then and now, Ryan more or less stayed, with his mother right by his side the entire time.

One week ago today Carolyn unexpectedly had to go home without her baby.

Way back when we met Ryan, he was being tube fed because of hyperinsulinemia. He would later become dependent on parenteral nutrition after having his GI tract removed. He endured numerous surgeries, infections, and pain. Most adults would have wanted to give up, but not Ryan. Despite everything that Ryan went through, by no means should anyone consider his life a tragedy. He was happy. His life was a full one.

Today, on my birthday, we will attend Ryan’s viewing. I honestly cannot think of a better way to spend a birthday than to celebrate and honor the life of this little guy. 

February 2009 – May 2013

We miss you, buddy.

*If you would like to honor Ryan, his family is asking for Pixar toys (Ryan’s favorite movies) which will be donated to child life at the hospital in which Ryan spent most of his time. Please leave a comment and I’ll email you their address.*

Hawaii

We’re back from a wonderful 10 day vacation in Maui. We pulled Sonshine out of school for the 10 days, relatively reluctantly because the vacation meant he would miss two weeks of therapy. What we did not anticipate was that he would get daily therapy while on vacation showing us exactly how much there is to learn outside of the classroom.

Our rented condo was relatively large with two lanais and a set of stairs, which encouraged much more physical activity than possible in our tiny city apartment. Sonshine has been able to ascend stairs for a couple of years now, but on this trip he figured out how to descend. Much to our delight, he has returned from the trip stronger and far more confident in his ability to walk with support.

Sonshine most definitely discovered the joys of being sans pants.

Part of Sonshine’s rigorous PT regimen was his first sea adventure on a glass bottom boat. Even though the boat was small and swayed from side to side, Sonshine navigated the vessel like a champ.

OT was replaced by near daily trips to the swimming pool and the beach. The sensory component of the sand and water were slightly overwhelming.

Cold water is not Sonshine’s friend…

Sonshine spent a large amount of his time at the beach asking to go “up-up.”

But, we eventually got a smile or two out of him.

Do you see the look of desperation?

“Daddy, I’ll love you forever if you just take me home.”

And, feeding therapy was replaced by blissful banana cream pie eaten at an unfamiliar restaurant. It was Sonshine’s first dessert, one of his many firsts on the trip.

At first, a little sweet for his tastes.

Sonshine wasn’t the only one who had a great time though. Because Grandma came along, Tom and I were able to escape for a few adventures of our own. We drove the Road to Hana in a mere 13 hours, stopping for several hikes to breathtaking waterfalls along the way. Because we were willing to travel a bit off the beaten path, we had a couple of the waterfalls all to ourselves. Tom said that we were the hipsters of the Road to Hana. 

The beginning of the trail to the Red Sand Beach, where Tom helped carry out a woman with a compound fracture.

View over the Black Sand Beach – there were many different colors of sand and a beach for each one.

We made it!

What we had to hike through to get to the waterfall.

Many, many twists and turns. It was slow going…

If anything, I got really good at taking pictures through the car window.

We also did a couple of hikes around West Maui. It was pretty deserted. We again had the trail and amazing views all to ourselves.

Sea turtles!

But, Grandma was surely not left out of all the adventures. Mom and I went on a half day snorkel adventure where our tushes were burned.

At the start of the trip, not quite so toasted yet.

Out of 200 pictures with the underwater camera, this was the best.

Sadly, our vacation had to come to an end and we were forced to return to the real world. Until next time, Maui; it was a blast.

The last sunset of the vacation from out lanai.

The pre-K saga

We thought after our first IEP that we were in the clear. All we had to do was tour a few preschools, turn in our rankings, and all would be right with our world. But, as it turns out this process has become much more laborious than we could ever imagine.

Since our IEP was held before the residency match, we really had no idea if we would remain in this city or even in this state. Given all the unknowns, we only toured a few schools prior to the IEP with the intention of taking it wherever we ended up.

Initially, we felt the IEP was successful. Sonshine retained reasonable levels of all services and he was able to stay where he is to avoid several transitions before the next school year. This, we learned later, was only possible because the school district has no special needs spots in the entire city.

Our initial elation about a positive IEP was dampened upon touring more schools. We have since found that the document is lacking a great deal of support which Sonshine will require to successfully navigate any new classroom in which he is placed. Nowhere in his IEP does it specify that he requires full adult support for eating, toileting, hearing aid checks, and in aiding mobility for any and all transitions. This is a major deficit for which we will need to call an addendum meeting.

But, before we can even think about required supports in his IEP, we need know where Sonshine will be placed. After touring schools and making our decisions on ranking, we filled out the pre-K application which told us to turn it in at office A. Just in case, because I knew that Sonshine would be in a fully special needs classroom, I called office A to make sure it was the right place to turn the application into. They referred me to office B. Office B and they told me to take it to office A and request that I speak with the “special needs person.”

So, early last week I marched down to office A and asked for the “special needs person.” The receptionist (along with everyone else in the office) hadn’t a clue what I was talking about because that special needs person does not exist. They then proceeded to tell me that Sonshine was not guaranteed a spot in a pre-K class and that I would need to put him on a waiting list and fill out income information to determine Sonshine’s eligibility. I told them that it was federal law that they educate my son and that they were full of it.

I left office A upset and feeling as if Sonshine would never be enrolled in school. So, I called office B twice, our school district representative twice, and a random community resource once. When office B finally got back to me they told me that they were indeed the correct office and that I should fax over our application.

We faxed the application over the weekend and when I called on Tuesday to ensure that all was in order, office B informed me that while the right person had finally received the application, we filled out the wrong one. Apparently, filling out the pre-K application for special needs pre-K is not appropriate; we should have filled out the kindergarten application because that makes so much more sense. This is bureaucracy at its finest.

We will receive our placement the first or second week of June. To make things slightly more complicated we now have to look for after-school programs once we receive the placement so that neither Tom nor I have to quit our jobs. I’m sure this will be an entirely new ordeal.

*rant end*

He’s worth every second.