One Step Forward.. Two Steps Back...

It's hard. It's never easy.. but some days are really Hard.
Not really at home, or socially, because we've learned as a family to adapt.

But it's the school environment that is so hard. I guess in part because we have no control over the situation or because our expectations are so high.

Regardless, it's hard. - no soap box standing today.. just letting you know how I feel.

Today I'm meeting with the principal to talk about 2nd grade. I want him to know that I would like to be part of the choosing of the second grade teacher.

Our kindergarten teacher was a dream.. she adapted her classroom for Michael.. even taught all of the children sign language so they could talk with Michael. I nominated her for teacher of the year- and I ASSUMED that all teachers were like her.

Then first grade.. the opposite. I'm not saying that our first grade teacher is bad. I've seen her teach... I know she can be funny and can engage the children.

So maybe it's his computer, or maybe it's the fact that she's never encountered someone that can't talk, but WANTS to be involved.. wants to learn. (I rant about autism all the time I know- but that's the MAJOR difference between Michael's APRAXIA and AUTISM. He wants to learn, he wants to be a part of a group. He feeds off of his peers.)

We fought to keep him in a regular classroom at the beginning of the year. This teacher only wanted him in her classroom for 30 minutes a day. We fought and won .. more time in a regular classroom so Michael could learn from his 'normal' peers.. but still, she removes michael from the other kids... I modify his homework weekly, only after I ask for her to send it home..... and the list goes on.

We've fought for nine months to give our child the type of education his twin is getting. We've had monthly meetings, have created books and manuals, anything and everything we could think of.. and still- resistance.

So today- I'm looking forward.. I'm going into that office today and demanding... demanding to either be a part of the 'teacher picking' process or be allowed to change right away if I don't like what I see.

Because honestly, I don't think I can take another year of my child not being taught.

Wish me luck - meeting is at 11:30 today.

Christine-

My baby is growing up...

We got back home last night from our 11 day adventure... Driving to MS and TN to visit family... then getting to our house on Saturday..

The house was wonderful... Michael got his own room.. although he had to be convinced most nights to go to bed.. he did, eventually! The pool was a hit, and everyone spent a lot of time there.

Disney couldn't have been any better.
Michael squealed during the parade at all of the characters. Everytime we saw one, he wanted to get his picture with them.. it was the cutest thing.
I think he loved the rides the most. I know everyone else did.

Honestly, I was nervous at first.. really anxious at how he would do. If it were just me with him.. we would have stayed on the ground, and walked.. a lot- but Brad encouraged the both of us.. that he was ready.. that he could do what everyone else was doing.

And isn't that my platform in life for him? I'm always preaching to everyone that I want Michael to be like everyone else.. let him be NORMAL.

So with a big sigh, and my hands wrapped tightly on his... we rode the rides.. HE DID GREAT.. He loved it.. he wanted to do them again..

We went on a boat ride, it was more of an "educational ride" than a thrill ride- mind you, I didn't ride "splash mountain" with Michael.. (it's a big water ride.. big hills, lots o' thrills)..

now on this educational ride- where there were no hills..
Michael's heart was racing.. and his hands tightly gripped to the rail- his legs started to shake..

(insert evil eye to my husband)..

my poor baby.. he was looking around .. waiting for the earth to escape him.. but it never did.. and eventhough I held onto him tightly.. he managed.. he laughed and at the end he clapped and clapped.
(I'm certain he was scared to death of 'splash mountain' .. but Brad swears he had a great time.. and I'm sure he did! )

So the crowds were fine. Michael did fine- he listened, he stayed close.. he had an adventure.. and he enjoyed his spring break-

We created a scrapbook full of pictures for his class today. He was able to show everyone the book and tell them about his vacation. The teacher said it was a hit!

:)
Great Vacation.. Great Fun.. Lessons learned.. maybe Michael is ready to let go of my hand... and even if he is.. I'll always be close- close enough to take him back.. whenever he's ready!

More pics from Disney

Disney was so COOL....

Michael had a great time.. His favorite Ride was this one.. Speedway Race Track- where he could race.. and drive- all by himself. he could go fast or slow- it was wonderful.. I think we rode this ride the most- he drove everyone!
He's never sat still enough for someone to paint his face.. but his sissy and I got our faces painted.. you can hardly tell in this picture... but it was a green snake! and his Pirate Gear.. can't forget about that.. he and his brother were great pirates!
If you think Michael looks scared to death.. it's because he probably is.. although I probably fretted more than he did!!! He did so great.. I'm so proud of him.. he rode every ride we did (except for space mountain and one other roller coaster). He was always nervous at first.. but then he would clap, clap and laugh at the end of the ride.
This was our first day of vacation- we went to Coco Beach.. it was so much fun.. Michael never went too far in the water.. I'm not sure if it was because the water was too cold, or if he just had more fun running back and forth between me and the waves!

Tomorrow's a BIG Day...

It's a huge day tomorrow.. HUGE..
I will need to give a little back story for you all to understand how BIG this day is for us..

Michael's had his ACD* for three years next month.. and it's taken the school 20 months to understand how important his computer is - not only to him for communication but also from an academic/learning front.

We struggled, we've fought, two lawyers, three advocates, a handful of doctors ranging from neurologists to pediatricians, four speech therapists, oh yeah and two parents that will NOT give up!~ All of these people in a room, with letters, with examples of success stories, and it's still taken 20 months to get the school to use this computer in the classroom everyday.

HOWEVER.. TOMORROW is a new day.. It's a BIG day.. because someone from the school is going to attend an all day training on Michael's computer. They are going to learn the basics and hopefully feel more comfortable with using it at school everyday.

Michael's para** will go to this training and it's a BIG deal. Because this means that the school recognizes how important his ACD is. It shows us that the school is starting to bend.

I can't be too harsh on the school. Looking back on all the struggles, I have to say that I don't think they've ever experienced someone like Michael before.

See, Michael has a process delay, and he's non verbal, but he's super social, and he learns by mimicking his peers. He's not autistic.. so the training that they've had for autistic kids didn't always apply to him. He was different- and then he had this super expensive computer that can do all of these really cool things- but this school that has only been around for five years, has never seen one.

So it's a BIG Day.. It's a Cool day.. I hope the para (Teri) learns a lot tomorrow. I hope she learns not to be scared of the computer.. I hope she takes away from the 6 hour class how helpful his device can be. And how important it is for his communication.

BIG DAY..

*ACD- Alternative Communication device- see previous posts for more info.
**Para- Para professional- It's an adult that has to be with Michael all day during school because Michael is not able to move through the school or learn independently. She basically is there to make sure he doesn't hurt himself- she walks with him to classes and often times is there to apply the lesson the teacher has modified for Michael throughout the school day.