We Lost Michael Once...

Only for about 3 minutes... It was Cam's 10th birthday week, there was a group of us (20 or so) at the AB tour downtown.. we were waiting for our turn to go- and I looked around, no Michael.. not by the truck or the plane... not with Brad or his sissy..
I looked up at Kathrine and she knew.. that panicked look- I felt my stomach in my throat but I didn't know what to do. He was always right next to me, unless something shiny caught his eye. So she told Tom (her husband) and he made a b-line for the front door- the only way out (did I mention that Tom is smart?) and Brad and the rest of us starting walking around, searching for this 5 year old.
He hadn't gone far.. Tom did end up finding him close to the door- but we don't think he was heading out.

But there lies my biggest fear- what do you do when you've lost a non verbal child? A child that looks perfectly normal... and if you didn't know him, you wouldn't know why he's not talking..

So in less than two weeks we're venturing out to Disney World. I'm so excited.. we all are. (Thrilled really) But Disney will be the largest place we've ever gone. Michael isn't as clingy to me as he used to be. Good and Bad. Good, cause whew.. I needed a break, and Bad.. cause he's never met a stranger- he'll go up to anyone- he has no fear.

When we went to Sea World I bought him a tag to wear- It's a tag that he can wear on his belt loop, on his pants or even on his shoe laces. It says his name and it lets anyone know that he's non verbal, and it gives both mine and brad's phone number.

http://www.mypreciouskid.com/dog-tags-personalized.html

I'm just wondering.. is there anything else I can do? I am going to contact the main gate, guest relations, when we're actually in the park. To give them a photo and description of Michael- just in case...

I'm sure I'm overreacting.. But I'm a worrier.. I'd just assume strap Michael to my back and tow him wherever we need to go. But I don't think I can do this for 9 days in Orlando..

Any ideas would be greatly appreciated!

My Ah-Ha Moment

Another great therapy session today.. Julie wants to add time to Michael's therapy on Tuesday's. She feels that he can handle more than 30 minutes with her now, and that doesn't include getting to jump in the "Ballpit" at the end of his session. (It's his reward- if he works hard, he gets 5 minutes jumping around in the ball pit)

Julie said something today that kinda shocked me. Not in a bad way, but in a way that made me step back and say 'you know what.. you're right... that's pretty cool'

Michael was showing Julie pages on his computer, and he was jumping between six/seven different screens* to tell him about his day, or what he wanted to work on next.
My ah-ha moment was when she said this- "Don't you think it's strange that he can manipulate these screens and go so quickly to where he wants to talk at this age, considering his process delay/apraxia?"

HUH?

She said she's never seen anyone at this age flip through his computer to talk, or to play a game of go fish.(his favorite game)

WOW... It took the ride home to absorb this.. and it was so ironic because Brad and I have battled the school with this fact.. at home, he can tell me within 10 seconds and four screens that he wants "orange juice and oatmeal" for breakfast. But the school said he wasn't using it in a meaningful way at school.

So it was nice to hear someone else mimic what we have thought all along- Actually, it was overwhelming to hear that Michael is doing GREAT with his communication!!!

What a cool day!

*screens- Michael has a 'laptop' (Alternative Communication Device) that holds screens/folders/pop ups. Basically, there's a main page, and from that main page are sub folders, and within those sub folders there are pictures, places, people. From the main page (1) he can go to the 'me and my needs page (2) and then to breakfast (3) and then to drink (4) and he has a variety of choices he can make(5).. if you're still with me.. when he makes his choice.. it says.. I want x . or can I have x to drink. ... this device not only speaks for Michael, it gives him the opportunity to express his wants and needs...

Welcome to Holland

Another great day at therapy.. Seems as though Michael is becoming quite the great prankster.. he's using his computer to make people laugh.. and ofcourse it's contagious..

Below is a letter that Brad shared with me last year.. it's pretty moving.. so get the tissues ready.

Welcome to Holland
Parenting a Special Needs Child
By Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this:
When you're going to have a baby, it's like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful plans: the Coliseum, Michelangelo's David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place
So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around and you begin to notice that Holland has windmills – and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy ... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away, because the loss of that dream is a very, very significant loss.
But if you spend your life mourning the fact that you didn't get to Italy, you many never be free to enjoy the very special, the very lovely things about Holland.

Speech Therapy Update....

So here we are .. up to date..

Today we had our second speech therapy session with Julie.. our new/old SLP. She saw Michael for almost a year between his last year of preschool and his first year of elementary school.

She had so many wonderful things to say.. how much more mature he is.. how he's able to go through an entire therapy session without me (which is huge.. LOTs o Tears in previous years).. how well he's able to navigate through his computer. (I'll write a separate note about that another day.)

This is why I decided I needed to start this blog..
You see.. our family lives in the moment.. sometimes it's hard, sometimes it's full of laughter.. just like everyone else! But it's so hard to see how far we've come- how far Michael has come.

It was so refreshing to hear what she said. It was so comforting... It almost made the fact that she said Michael will never talk almost not break my heart.

The neurologist told us that the longer he goes without speaking, the odds are against us..
Our old therapist (Andrea) worked twice a week on trying to get vowel sounds out of him.. some days were good, most days were hard, but never consistent.

So here I sit... with the spoken truth that my son will never form a sentence, or possibly a word. She thinks that because he gets so excited all the time, that maybe we'll hear a "YEAH" when he's happy- but we've decided that we won't try to force sounds from him. Instead we will work to have him independently use his computer to effectively communicate to peers, teachers, family.

Of course we will continue to do everything in our power to help our son... but after 6 years of speech therapy, we are going to change directions.

We love you all.. thanks for reading.. and listening to me ramble- today was a tough day... but it had great news...
We spend so much time thinking about what Michael doesn't have access to, or what he's lacking physically, mentally.. we forget about all he's accomplished, the little things, like being able to be independent, to listen for 30 minutes, and learn.

with all my love-
mom

Updates/ Transitions

Just to give everyone a brief overview of what Michael is diagnosed with, what he doesn't have.. and what we currently are doing to help him.

Michael is diagnosed with a Process Delay and seizure disorder from his neurologist. The good news is that he's been seizure free since age four.. so this month is 3 years seizure free.. WAHOO..
He is completely non verbal. His receptive language is working, but his ability to form words is not easy for him..because of the process delay and the apraxia.
He has Apraxia, not Autism.. although it's tricky and Autism is much more well known, it's not what he has. the link below is VERY helpful in explaining the difference.. please take a moment to look.

http://www.essential-guide-to-autism.com/blog/2008/05/01/what-is-the-difference-between-apraxia-and-autism/

Michael is in first grade. He has an IEP (Individualized Ed. Plan) that 'grades' him on his goals for the year instead of the standardized curriculum. He sees a speech therapist (SLP) four days a week for 30 minutes. He sees an O.T.(occupation therapist) three days a week for 30 minutes, and an P.T. (physical therapist) three days a week for 30 minutes. He's also in a special ed room (now call resource room) for two hours a day..

Basically.. he's a busy 1st grader!... but he LOVES school.. loves it! Especially the bus ride.. and of course LUNCH.

We pay for a private speech therapist once a week for an hour.
Last week Brad and I had a tough decision to make. Our policy changed and our therapist for a year was no longer in our network and our out of pocket expenses tripled... we decided to go back to his old therapist at Children's Hospital.

He does great in therapy, he listens, he wants to work and he wants to give 'high fives' and show everyone that he CAN do it! He's got some serious patience... and tenacity!

Welcome to our Blog....

Well.... I've been putting this off for months.. but I've decided I can't put this off any longer.
Our family, our lives are constantly changing. Good news, great news.. and then news that brings us to our knees and we need you, our family and friends to be there to support us... and bring us back to our feet.

Today is one of those days for me.....

I'll start this blog with the things that I'm so very thankful for.. the things that keeps us going, keeps us striving to be better people.. to be a healthy, loving family.

We are a family of 5... Two parents that love each other... Three wonderful, loving, generous children that are the absolute joy of our lives... and two pets- it's a positive post today.. so we won't comment on them.. other than to say that our kitten is a year old this month and our yellow lab is 5 months old and is house trained and crate trained.. (that is an absolute blessing)

So this is where I will end the first blog- the first for a voice for michael..
yeah!