Can We Talk?...

Before I get down to business - can you just look up?  Not to be a total braggart, but can you even stand how adorable the new header pictures are??  The matching outfits?  The poses?  I took all of the pictures and didn't pose ANY of them.  Brian stood that way on his own.  Can you stand it???  Okay...moving on.

I have big news.  And by big - I mean as big as the "Christmas miracle" that was Gavin beginning to walk.  Big - like when it happened, people cried.

As you all probably know, communication is an ongoing project with Gavin.  And a topic that is very emotional for me. I never know what Gavin actually understands - if he grasps the concept of communication using pictures or iPads or buttons or sign language.  We've tried so many different things with him and he's been inconsistent with all of it.

This afternoon, while making a Fluffernutter for Brian's lunch, my phone let me know I had a text.  The text was from Sara and it read:  "BIG DAY TODAY!!  Pick up will be extra exciting today.  Milestone day caught on video!"  My mind was racing wondering what it could be.  I couldn't WAIT to get to school!!  Brian and I pulled up in front of the Kindergarten Center and out came Gavin with Miss Sara and his teacher, Miss Megan.

The two of them were so excited to show me a video Megan had taken on her iPad in the classroom.

Two days ago they had shown Gavin a Big Mack switch (think of a Staples "Easy Button" that you can record your own message on).  It had a picture of the sink in the classroom taped on top with "I want water" recorded on it.  Gavin is SO motivated by playing with the water in the sink.  He was shown this switch a couple times and needed hand over hand assistance to touch it before they would turn the water on for him.  That was Tuesday.  Wednesday they didn't touch it.  Today, during PT with Miss Wendy, she had him walking to the sink - the Big Mack switch wasn't part of their therapy and was down the counter away from the sink.  Now that you have the background.... watch this video.  Without any prompting, Gavin initiated communication on his own.

Sara said he did this not once, but FIVE times.  No one helped him...prodded him...asked him, even.  He did this all on his own which tells me one thing:  He gets it.  He gets it more than I thought.  And I am a Mom who gives him a LOT of credit - so that should tell you something.

I hope you all realzie that this is such a big deal. We are so, so happy tonight.  As soon as we got home from school, I went online to a local assistive technology lending library and requested THREE Big Mack switches for home.  I'm so excited.

Before any of this happened, I had a whole blog post planned about Brian and how he's communicating lately.  Ironic, right?  I'll post that soon... along with all the other adorable photos from our Spring photo shoot.  Here's a couple sneak peeks...

As always, thank you for loving our family!  And thank you for cheering on our superhero.

  I hope he inspires you as much as he inspires us!!

The April Fool...

 All day yesterday I was dealing with a Fibromyalgia attack.  I put the boys to bed at their 7pm bedtime, and crawled into bed myself for the night.  Even after an almost 12 hour sleep - the alarm rang too early this morning.  I dragged myself out of bed at 6:45, trading a shower for a baseball cap and extra sleep.  I was looking forward to some alone time this morning with the boys back in school.

Miss Sara arrived at 7:15 and we started to get the boys up and ready for school.  By 8:30 we were outside and as each minute ticked by I got more and more anxious.  Where was the bus?  I had to get Brian to school on time...and back home to greet contractors that would be working all day here at the house.  By 8:35 I sent a message to the bus company... and by 8:40 I was putting Brian in the car and was going to drive both boys to school.

Suddenly Ed appeared in the garage and I heard, "Uh...Kate?  Don't the boys have off today?"  I rushed inside to look at the calendar.

*Blush*

Turns out, the April Fool is me this year.

I feel very fortunate that since my October diagnosis of Fibromyalgia that I've only really had a handful of attacks.  But boy, when I do - it sucks.  For me it feels like someone is squeezing every appendage - my arms and legs and fingers and toes - hard.  And my skin feels like I have a horrible sunburn.  Then the exhaustion - intense, bone crushing exhaustion.  Did you ever have a big, long cry - the kind that wipes you out and makes your eyes heavy?  That's how I feel, minus the crying.  But then all of the above makes you FEEL like crying...you kind of can't win!  But lucky for me - I have a sense of humor.  And cute kids that refuse to stop making me smile.  And Miss Sara who took the boys outside on the swingset for a while so I could stare at the wall and contemplate nothing.  That was nice.  Sometimes nothing is everything.

We did accomplish two important things today!  Gavin's speech therapist, Miss Whitney, asked me to videotape Gavin requesting a toy with his picture cards.  All last week - during Spring break when we had all the time in the world - he wouldn't do it.  Just wouldn't do it.  But today - success!  Here's the promised video:

And - in an amazing feat - we were able to get a urine sample from Gavin!  Actually, it wasn't that dramatic.  As it turned out, he was more than thrilled - giddy, actually! - to sit on our travel potty seat.  Don't tell anyone, but I sat the potty seat on a kitchen chair and put his video player and a toy on the table in front of him.  With his legs dangling in mid-air, there was less chance of him trying to stand up and walk away.  And it worked!  I'll be delivering the urine sometime tomorrow to the woman who did the Thermography testing on him.  Testing his urine will tell us if Gavin is overloaded with mercury in his system.  The results should be rather quick, so I can't wait to report them to you!  

If it turns out that the results come back "positive" - the only treatment is a family trip to Disney World by way of private jet.  Of course, Miss Sara would be required to come along as part of the treatment protocol.  And we'd all be required to stay (in separate rooms, of course) in the Disney Castle suite.

Now THAT is the kind of April Fools joke I can handle!!

Mommy Boot Camp...

Last night I went to bed early with one thing on my mind - my plans for Gavin this week.  With Miss Sara away all week, I made the decision to keep Gavin home with me.  I am so grateful that I've been able to have a helper since Gavin was a baby, but I also relish the time alone when it's just the three of us.  And I am really looking forward to mornings alone with Gavin while Brian is at school.  I made up a schedule for each day and declared the week "Mommy Boot Camp!" 

My first order of business was to make some new communication cards.  I bought this Laminating machine a couple years ago - and it has more than paid for itself.  It's so easy to make picture cards for Gavin!

I placed the two books (his favorites!) in the clear bin with the card taped to the top.  He looked at it for about ten seconds...

Looked up as if to say, "Let me get this straight..."

...and then proceeded to touch the picture...

...pull off the lid himself...

...and pull out his book!  He was quite pleased with himself.  We did this several times throughout the morning.  He did a great job!  I also did it with other toys - had him touch the picture card to "request" it.

The two of us had a great time.  Well, except when we got to the physical therapy part of my schedule. Walking for therapy doesn't even seem necessary anymore - at least not at home!  He walks all over the house with increasing confidence.  I decided to push Gavin to crawl down the stairs.  It's something he always resists.  He can crawl up...he can walk up...he can get himself out of his bed by going backwards...but he just won't crawl down the stairs.  You put him on the stairs to go down...and he just wants to go up.  So that wasn't Gavin's favorite part of the morning.  But a Mom's gotta do what a Mom's gotta do.

I think his favorite part of the whole day was picking Brian up from school.  He love his little brother so much!!  On the way home, I told Brian about our morning and briefly shared the communication card experiment.  As soon as he got his coat and shoes off, he wanted to "do therapy" with Gavin.  Without me having to show him what I did, he instinctively (and sweetly) put the box in front of his brother and said, "Okay, Gavin, touch this picture to tell me you want your books!  Go ahead, Gavin.  You can do it!"

And then he waited.  And waited.  Reminding Gavin every ten seconds that he was still waiting for him to touch the picture.  I went back and forth between wanting to cry and wanting to laugh!  At one point, Brian even took Gavin's hand and tried to force him to touch the darn picture...

And just when he had all about given up hope - Gavin touched the picture.  And no one was happier and more encouraging than Brian.

Brian took a nap this afternoon while Gavin and I spent time reading in our "book nook" - or "book fort" I should say!  It's a pretty awesome hangout!

But, once again, I was chopped liver once Brian came down from his rest.  These two boys love to hang out together lately...and nothing makes me happier.  I couldn't capture it on video, but Brian was reading and singing to Gavin while they were in there together.  Gavin was so happy!

 Unfortunately, I woke up feeling sick this morning and I'm hoping it doesn't lead to anything too bad.  This weekend is my nephew's wedding out of state - I can NOT be sick for that!!  And, of course, I don't want the boys to catch whatever I have.  I hope it doesn't get in the way of my "Mommy Boot Camp!"  I have big plans this week for my little superhero and "ain't nobody got time" for being sick!!

p.s.... Don't forget to enter my Mattel giveaways!  There's an entry to win a deluxe basket filled with toys in the "Save The Bunny Giveaway" post - and an extra giveaway form on the Chasing Rainbows Facebook Page!  You can't win - for your child, your niece or nephew, your grandchild, your godchild - whoever - if you don't enter!!  

Humility...

Gavin and I have quite a history together.  

Although I was completely blindsided by his issues following his birth - and felt ill-equipped to handle the unknown ahead of me - the two of us quickly fell into a rhythm and created a very strong bond.  I would have slept in the NICU for those 30 days if they had let me.

Once he came home, it wasn't long before we were back in a hospital.  I was the gatekeeper to Gavin for close to three months as he recovered from RSV and Botulism.  This time I DID sleep there - on a cot next to his crib - only going home once.  I learned all I could learn from the doctors, the nurses, the therapists - and googled all through the night.

When we were finally settled at home and could "begin our lives" - I did everything times a hundred.  He needs patching for a half hour a day to strengthen his weak eye?  That, to me, meant patching for one hour every day without fail - and "made up" vision exercises of flash cards or books or puppet shows...anything to get Gavin to look.  Preferably, at me.  

And when he did look into my eyes, it was my greatest reward.  It still is.

Having the therapists come to the house was awesome.  I never missed a thing.  And I would purposely buy toys - and rotate them often - so he would be getting lots of therapy all day without even knowing it.

Over the years, Gavin continued to make progress.  And, if I'm being 100% honest, with each "gold star" Gavin received...I felt I received one, too.

But the difference was - Gavin's stars represented progress.  My stars represented bits of redemption.  I will probably always feel that I am responsible for Gavin's issues.

Of all the therapy that Gavin has received since he was an infant - physical, occupational, teacher services and hearing services... speech therapy has always been the most difficult.  

Not for Gavin... for me.

I could list an entire page with all of the communication methods we've tried with Gavin.  Devices and switches and systems.  None of them were very successful.  I even attended a two day conference filled with teachers who wondered what I was doing there - and I came home so depressed knowing that communication style would not work for Gavin.  At least not at that time.  I went around the house and took photos of everything - every toy, objects, rooms, family members - and for a long time Gavin did well with that.  We would hold up two cards and he would choose between them.  From what toy do you want to play with...to which one is Daddy's car...to yes and no.

We moved onto the iPad when things stalled a little in the picture department.  Plus, I thought it might be time to use a communication program.  We tried a bunch of different ones - and found success with the easy to use "So Much 2 Say" app.  Gavin continued to make choices on the iPad and it seemed things were moving in the right direction.

When he started school, I knew that I would be losing my "control" of a lot of things.  Soon I would be hearing about his day - and not seeing things first hand.  I knew that they weren't using the iPad that much in school for communication and wondered why.  Then, silently at home, I started to get annoyed that the iPad wasn't being used.  Then I really started to worry when I heard that they had gone back to pictures.  But his speech therapist, Miss Whitney, maybe sensing my tension, called a meeting today.  She assembled Gavin's teacher, his occupational therapist, an assistive technology expert from the school district and herself.  I dreaded this meeting.  If I'm again being 100% honest, I was defensive for two days leading up to it.  I walked in ready to be annoyed and adamant.  I walked in with a "nobody could possibly know Gavin or know what he needs like I do" mentality.

But then something happened.

I sat there and quickly realized...these four women are sitting here with me during their lunch break to discuss my son.  These women have prepared remarks and have watched and studied Gavin enough to come up with suggestions to help him.  As I listened to Whitney explain why she went back to pictures and how it may lead to using the iPad down the road but that it's just not functional right now... a light bulb went off.

I heard my Dad's voice:  "Kate, never think you are so smart that you can't learn from someone else."

In that moment, I realized something.  I was in control for 4 1/2 years.  I knew Gavin's every move... every expression.  I could anticipate every want... every need.  I was in control of his therapy and was able to offer a lot to the sessions.  But now - he's not in my home anymore.  It doesn't matter what worked for him last year.  It doesn't matter what worked for him at home... with me.  What matters is what works for THEM... at SCHOOL.  I needed to back the hell off.

Whew.

When I took a breath, I realized I could then listen instead of simply hear what they had to say.  And when I listened - I was blown away.  "Start small," I heard.  "Put some of Gavin's cause and effect toys in a clear bin and put a picture on top.  It may take a LOT of repetition, but the goal is for him to touch the picture in order to tell you that he wants a toy in that bin."  "Put a picture of his milk on the refrigerator door and have him touch it to tell you he wants a drink."  When I listened, I realized that these women were on top of things.  They had a singular goal - to push Gavin so when he hits Kindergarten, he hits the ground running.  (That may be literal!)

Today I learned some important lessons that I think will serve me well as Gavin continues his education over the years.

One:  Worth repeating.  Never think you are so smart that you can't learn from someone else.

Two:  I'll never lose the 4 1/2 years when I was in control of everything surrounding Gavin.  It's okay to pat myself on the back for how far he came.  

Three:  After I'm done patting myself on the back, thank the women who are standing in my place. Teachers and therapists don't just train to help children...our children become "their children."  At least I have found this to be true for us.  When I picture people taking the time to even give Gavin a second thought after they "clock out" - it brings tears to my eyes.

Four:  The classroom is a different environment than home.  You have to let the professionals tell you what works for Gavin when he is there... regardless of what has worked for you at home.  There are different distractions and pressures... and we all know that kids are totally different at home than they are, well, everywhere else.

And finally:  A dose of humility is good for the soul.  And tonight, I feel humble... and ready to rock this communication plan!!

In other news from our house... Brian was diagnosed last night with an ear infection and Roseola!  I've never experienced Roseola (with my kids) so I learned something new.  It starts with a day or two of high fevers... and then the fevers go away and the kid just feels awful.  Then, days after the last fever, a tell tale "Roseola rash" spreads all over the body.  That's just how it happened with Brian.  Two days of high fevers.  Up every night crying and unable to sleep but wouldn't tell me that anything hurt.  Then yesterday the rash popped up and he started complaining about his ear.  So off to the doctor we went.  He's been home from school all week with Mommy and we've done very little sleeping and a whole lot of snuggling.

Thank you for loving our little family!

ps... don't forget about our new "Chasing Rainbows Facebook Page."  You'll get instant alerts to new blog posts...info about giveaways...pictures and posts...and conversations that start following blog posts!