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!

Retractions and Extractions...

There's a reason that I don't work for Time Magazine. Looks like I'm not much of a fact checker. I got a few emails politely correcting some of my statements about Proloquo2Go. What I should have said was "We have not been able to figure out how to..." or "I'm too busy to go through eight steps to..." or "I can't be bothered reading the very detailed manual and need something quicker to manage." Instead I made bold, sweeping statements like "You can't add your own photos" (which apparently is not true!). I am hereby retracting all of my incorrect and grandiose statements about Proloquo2Go - except the part where I said it was a great app. Because it is. And I went back and edited yesterday's post. I guess I would never make a good journalist. Oh well.

Thank you again to Kirsten and Eric, the developers of the So Much 2 Say Communication App I reviewed yesterday. Apple allots them only a small amount of free trials to give away - and by the time I did my review she had gone through a lot. But I feel lucky that I am able to give TWO away tonight. It hurts my heart to not be able to pick everyone - but I feel better knowing that the app is VERY affordable if you choose to buy it. So, with that said... in a lottery drawing done just now with Ed as a witness - the app promo codes go to:

Serena O'Malley

&

Courtney Norris

I will be emailing you your promo codes this evening! I'd love for you to stop back and let us know how your child does with the app.

Today was busy from the start. Miss Katja was nice to come early this morning so I could get to an appointment with the fertility clinic. I had to leave the house at 7:40. More on that later. When I got home we literally put the kids in the car right away and headed to the pediatrician for flu vaccinations! Gavin smiled through his injection...and Brian easily took the flu mist. No tears here!!

After lunch it was time for Gavin's teacher to come. Miss Janna is always so wonderful to Brian when he's around during therapy. Today he happened to have a late lunch and wasn't yet down for his nap. He never likes to miss the action...

...and Janna often includes him in such a sweet way.

Gavin and Brian are both very enamored with Miss Janna.

There is big news on the fertility front. After my ultrasound this morning showed ten mature follicles on my left side - and four on my right - I was scheduled for my egg retrieval this Saturday! Everything is very regimented in IVF. When they called me I had to immediately take my stimulation injections - the one's I've been taking every night. Then...exactly at 9:30 this evening, Ed is in charge of injecting me with HCG. Why Ed? Well - it has to go in my hip area and since it's a very long needle it's a bit awkward to do by myself. He's a sport to do this - for sure. The HCG is to trigger the follicles to release their eggs - just in time for them to be extracted by the doctor on Saturday morning. I will be under anesthesia for this. It's all pretty fascinating; but I have to say - this whole process has been enormously stressful for me. It may not show on the outside - it's business as usual around here. But I'm a wreck. There is so much riding on this - for me. I am a little worried about how I'll handle it if it's not a success. But I guess we'll cross that bridge if we come to it. In the meantime - I need to start trying to relax. My body is so tense I can barely breathe. It's not in my hands. It's not in my hands. It's not in my hands. Rinse, repeat.

So Much 2 Say...

As promised in yesterday's post, I want to share my thoughts on a new app on the market called "So Much 2 Say". I was given the opportunity to test it for 30 days if I agreed to review it here on my blog. While this is normally not my "thing" on this blog - I am very happy to make an exception in this case. Why? Because I feel like this app was exactly what we have been waiting on for Gavin. And I feel like we can't be the only family around that feels desperate for a more "user friendly" communication app (at a low price). The only thing I get from this review is 30 days free. And the developers have graciously offered some of my readers free trials as well - which I will give away by lottery to those of you who are interested.

I've mentioned before that Gavin currently uses (or tries to use) Proloquo2Go. This was the only app that I could find that was suitable for him and not too difficult. What WAS difficult was on my end and his therapists end. Changing pictures and setting up pages and choosing icons - it was a process. And Gavin isn't always patient for a long process. Also, Proloquo2Go doesn't let you record your own voice. Sure, they have male and female - deep and high pitch - Indian and British...but it's still some unfamiliar voice. It also uses icons which I really struggle with. Gavin is developmentally delayed. I don't want to confuse him by showing him a stick figure and trying to teach him it stands for "Daddy". Or a foreign looking cup that looks nothing like his own. It never made sense to me. I've been told that you can add your own photos - but I guess the fact that we could never figure it out says it all. Do I think Proloquo2Go is a great app? I do! But for Gavin...at this time...it's too advanced. And, quite frankly, it gives me a headache trying to figure out the complicated set up with grids and categories and a thousand icons to choose from for one object...it's a lot for this old lady.

So.... I happened upon a post on Facebook from a woman named Kirsten. She and her husband, Eric, developed the So Much 2 Say app. They have two daughters named Autumn and Ava with multiple disabilities - both are non-verbal. The app was intended to be a personal communication app for them that they could easily customize. A perfect partnership - and who better to develop and app (if you're smart like that, that is!) than parents who know exactly what their children need! It's obvious to me that it was made by someone "on the inside" of this special needs world. Why? Because they thought of things like making the editing feature passcode protected. I can't count the number of times Gavin hit the edit button in Proloquo2Go and we had to stop everything to try to get out of that mode and back to what we were doing. So Much 2 Say thought of that - so it makes it harder for a child who likes to touch every button to edit the program! They also allow for you to record your own voice - a feature that I love. And the program was made with the iPad 2 in mind - making it even easier to snap photos of all Gavin's favorite toys, books, movies, and every day items which I was able to make into cards in minutes. If you have a first generation iPad, it's just as easy to sync your photos and add them that way.

I took some videos - which I apologize in advance for as I took them myself while working with Gavin - so you can get an idea of our experiences so far with this app.

In this video, we are just starting. You can customize a page to have one to six cards per page. I chose two at first - and then kept adding two at a time on multiple pages. I thought it would make our lesson quicker if we worked on page one - and then I swiped to page two. This is how that went...

Gavin has a problem with accuracy when he's touching the iPad. He tends to use his whole hand a lot - and not always in a "tapping motion". So often things happen like this - a page will turn or a wrong button will be pressed. So I moved on by quickly eliminating the multiple pages so if he accidentally swiped, the page would not move.

I added two pictures - one of me and one of Ed. I asked Gavin to find me. This is what happened...and it melted my heart.

We tried it again after he realized (I think) that I wanted him to find my picture and not me and he did it!

In this video, you'll see Gavin make a connection between needing to touch the iPad and getting what he wants, which is pretty exciting. You'll also see me make an edit to So Much 2 Say so you can see just how quick and easy it is to do in the moment. Oh, and you'll see some really adorable smiles from our Superhero. No charge for that.

I decided in the end to change the screen to just one picture at a time - wanting to set Gavin up for success as much as possible. Although he does have to touch the picture - anywhere else in the screen won't do - being able to have one picture on the screen is a HUGE plus to me.

In Proloquo2Go, we couldn't do that which was disappointing. We ended up adding two of the same icons next to each other so Gavin would be successful whichever side he touched. I really appreciate Kirsten and Eric from So Much 2 Say for thinking of this!

So my overall impression of this app? I love it. I love how easy it is to use. I love that I can record my voice...or Ed's voice! I love that I can use familiar photos. I love the price at only $24.95 - MUCH less than the close to $200 they charge for Proloquo2Go. Once my free trial ends, you can be sure that I will buy this app. Gladly! (Although I hope that I won't lose all of my photos when I switch from free to paid - must check into that one!) I also love that it came from a family that "gets it". When I showed Miss Maggie, Gavin's speech therapist, she was thrilled that we found an alternative to use with Gavin. This app, to me, is a wonderful stepping stone to a future with Proloquo2Go. If Gavin isn't talking before that, of course.

I am sure that Kirsten will be reading this blog entry. If you have questions about this app, feel free to comment under this post! And if you would like to be added into my lottery drawing for a free trial, please comment or contact me personally. If you added comments yesterday - I did see them and will add you to the list!!

Be sure to visit the Close to Home website for more information about Kirsten and Eric, the So Much 2 Say app and see pictures of their beautiful daughters. Thank you, Kirsten, for this opportunity!!