Thursday, March 14, 2013


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 which one is Daddy's 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.


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 about and posts...and conversations that start following blog posts!


  1. "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." LOVED this entire post, especially that quote, Kate. For some reason it just really spoke to me this evening. Love reading your blog!!

  2. Great post and a great lesson for so many of us. I felt like I was reading about myself in most of this post - we just haven't hit the school part yet. I love hearing about school teams that put as much energy into our kids making progress as we do.

    1. Whenever I think of anyone - let alone a group of people - putting extra thought into Gavin, it gets me so emotional!!

  3. As a special education teacher, and now a mother to a child with special needs, this post resonated with me so strongly. I have sat on both sides of the meeting table, (only as a mom a few times thus far) and it is so hard to give up that ownership of everything your child is doing. The classroom is a very different environment like you said, and I know it will be hard when my little guy is entering the classroom and I have to allow the professionals that are with him all day be the ones to call the shots.

    1. Oh, Erin...I do NOT envy you!!! You'll be the Mom, but you'll also have the education background to back you up!! Oh boy - you better start practicing "restraint" now so you won't take so long to learn like I did!! LOL!

      I'm kidding. I bet that you'll be much better than me BECAUSE of your background...because you know what it's like to be the teacher who wants the best for that child IN the classroom.

      Or, maybe you'll be just like me - times ten. Time will tell. *wink*


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