Five

An interview with Isabella:

What does it feel like to be five?

It feels pretty grown up. Pretty like a big girl.

What do you look forward to this year?

Homeschooling and Pre-K.

Favorite color?

Pink, purple, red, and yellow

Favorite show?

Shaun the Sheep

Favorite food?

Pizza

Favorite book?

My Mommy and Me by Tina Macnaughton

Best friend?

Maya

What do you like to play with Isaac?

Squinkies

     Mommy?    Zingo
     Daddy?      Mario

What do you want to be when you grow up?

A photographer.

What do you like about Isaac?

That he's my brother.

What makes you sad?

Sometimes I cry happy tears and sometimes I cry mad tears. When I do happy tears is usually when I go to the zoo. I cry mad tears usually when I don't get to play Mario, sometimes. 

What makes you happy?

When daddy and me get to play Mario.

Do you like to take a bath or a shower?

Baths and showers. But I usually forget to tell you that I want a shower. 

Favorite ice cream?

Mint chocolate chip and Snappy Turtle...AND mommy's special ice cream (ben and jerry's). 

What do you like to do at Oma's house?

Swing

What do you like to do at Gar's house?

Play hide and seek with Josh.

Where do you like to go on vacation?

Beach!

What is your favorite animal at the zoo?

Penguins! 'Cuz they go, 'wobble wobble wobble'!

What kind of cereal do you like?

Cracklin' Oats

What is your favorite outfit?

My favorite outfit is this shirt that I'm wearing right now! (the shirt we just got at church for vacation bible camp)

Playing paper dolls with Josh. It went something like this:

Josh, now say, (in a high pitched voice) "Oooo, now I need my wedding gown!"
Now say, "Oh, but my crown, I must have my crown!"

He's a good sport.

Almost finished.

Making pizza for her birthday dinner...

Isaac on the big swing for the first time...

I just overheard Isabella asking Isaac his opinion on which outfit she should wear today.

a good day

Today is a good day. You're probably glad to hear it since my last couple posts have been downers. I prefer to call it, reality. If you want to read about unicorns instead, go here.

Anyway, Isaac had a great physical therapy appointment, Isabella had her first day of camp, Isaac had a successful early intervention appointment, and in an hour we'll head to ballet. All in all, a good day.

Yesterday, Isabella and I had to review, Rules for when mommy is getting Isaac to sleep. They are as follows, and trust me, very hard to abide to:

1. Do not ask for ANYTHING unless you are BLEEDING or on FIRE.
2. Do not TALK.
3. Do no SHOUT.
4. Do not BANG THINGS.
5. Pick a room and STAY in it.
6. No CRYING.

Easy enough, right? Nope.

Last night, Sarah and I began our eight week adult ballet class. Isabella and I went to the dance store to get my ballet shoes and she promptly informed the lady that I did not need pointe shoes and I would not be on stage. She's probably right.

On Sunday, Isabella will turn five.

She paints her own nails...

She puts on her own cooking show for us...

She can finally pump her legs...

 She pushes her brother on the swing without harming him...

And last but not least, my little man...

a dream

I've always had incredibly vivid dreams. At times, this is considered a blessing, or a curse. While in high school, I experienced the same dream scenario over and over again for an entire year, until finally, it went away. Everyone I shared it with, thought I was crazy.

Last night, I dreamt that I was eating a piece of bread, and Isaac walked over to me and took one bite after another, and ate the rest of my bread.

I've been up late the past few nights researching feeding therapy techniques. Somehow our feeding therapy has turned into speech therapy, and that annoys the crap out of me. Supposedly, the SLP we've been seeing for almost a year, is one of the best. At the moment, I'm failing to see what we've accomplished in this last year (in terms of feeding). In my dreariest moment, I'd say we've gone backwards. Lovely, right?

His speech has improved. Or more specifically, his attempt to make sounds. His SLP tells me I should make a list of all of the words he says, so that I can feel good about his progress. I should do that, but it's hard when, uh, ah, e, ay, duh make up a majority of his words and each of those sounds means something different according to context. He does say, bebe (baby), ball, mama, da, and a few others that you would probably be able to understand.

He may have dysphasia; he may have apraxia. It's all too soon to tell. Basically, what I was told a couple weeks ago, is that he will probably be able to say words, but the more complex your thoughts become, the harder it is to clearly share those thoughts, and that will probably be Isaac's case.

Do you know how many technicalities there are to forming sounds and eating? I bet you don't.

Isaac is supposed to sign something or make a sound related to the item he wants. Walter got mad at me this morning for holding out on Isaac before rewarding him with the toy he wanted. "Can't you just give it to him?" he said. I can. But what good will that do in the long run.

Sometimes I want to throw in the towel. I want to just stick food in an IV bag for the rest of his life. Sometimes I don't want to make him work for anything because all of that work means that I have to sit through an hour of speech therapy each week while he goes from angry-eyed-passivity to full blown anger that he actually has to do something; to make one seemingly simple sound before he gets the toy car.

The Occupational Therapist who completed Isaac's evaluation a few weeks ago shared two scenarios, one in which a young boy with Down Syndrome was handed everything he ever wanted, and never had to work to attain a goal, and is now a very unhappy adult. And another boy with Down Syndrome, was forced to work for that stupid toy, and had to say, /b/ for boy, and now he is a happy adult, and is able to hold a simple job.

I guess we'll keep plugging onward.

a long time coming

Yes, it's been a long time since my last post. Isaac is in a very fun, I love my mommy so much I must touch her at all times phase. This makes it challenging to get anything done. Today I hid in the kitchen and ate my dinner. Isaac was having a happy moment, so I had to take advantage of it.

A couple major developments, before I forget:

-Thursday, May 31, Isaac took two unassisted steps!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
-While playing a pattern game with bugs (kind of like teddy bear counters), I asked Isaac to match the appropriate bug to the color block on the card, and he put all five bugs with the corresponding color!

I've been able to tell for a while that Isaac understands "color", but he can't verbalize it, so the bug thing was pretty exciting.

My grandma stayed with us for a few days, and I'm not kidding, I was probably the happiest person on the block for those few days. I love watching my kids with my grandparents. Josh graduated from high school last week, so we had the special treat of both grandmas visiting for a couple days. The kids had a blast, and like I said, I was so happy.

A couple conversations with my grandma:

-Sierra, your hair looks so beautiful.
-Really? I just woke up, grandma. But I'm glad it looks good.
-Yes, it just looks so beautiful, but I could be wearing rose colored glasses, so you never know.
-That's probably more like it.

-What on earth is wrong with Isaac? Why is he so upset?
-I walked away to get something.
-Well, he certainly has you wrapped around his little finger!

-What is Isabella talking about? Did you really work out last night after I went to bed.
-Yeah.
-You mean Isaac doesn't give you enough exercise.

-Grandma, here's a towel and washcloth for you.
-I don't need those. I brought my own.
-You brought your own towel? Why would you do that?
-Well, I don't know, I just have my own.
-That's weird. I promise, we have plenty to go around, so if you need them, they're here.

***************************************************************************

The library has these things called Playaways (basically like a book on tape), and both kids love them. Isaac will even sit and listen for five to ten minutes.

Ballet rehearsal...

The big night. They were wonderful, and beautiful, and I cried.

By this point, Isaac was very angry. He has very little appreciation for ballet. Thanks to Sarah and Michael's iPod, he made it through Isabella's performance and then played in the hall with daddy.

Memorial Day

Tired

"Sierra, come look at your son." Sometimes, you just need to sleep with your pants on your head.

Walter is building a fort/swing set for the kids. Isabella has had a great time "helping".

Walter put us to work staining wood. Originally, grandma was sitting in a chair watching me, pointing out every single spot I missed, then she joined in, and I pointed out every spot she missed.

Singing and clapping with grandma...

At my brother's graduation, a young lady with special needs, walked across the stage and graduated. After the ceremony, when were hunting down my brother in a mass of thousands of people (not kidding, 426 graduates, plus family and friends), I told Walter I had to go to the bathroom, which I really did, but I actually wanted to find that family. I found them, and told this young lady's sister, what an inspiration her sister was to me. I imagined Isabella, well into adulthood, watching Isaac graduate. I told her about Isaac, and that we have no idea if he will be able to graduate, or what his ability will be in the future, but how amazing it was to see that it can be done. It can be done. I don't know if we'll get there, but if we do, there will be one giant celebration.

Isaac isn't like other two year old kids. This becomes more apparent to us by the day. It makes me want to hide in my house so that I'm not tempted to compare. The comparison hurts, a lot. In my angry moments, which usually happen at the grocery store, where another kid is sitting in a cart, and the mom says, "yeah, look at that baby!" I want to yell at her. Because guess what, in all of those situations, Isaac is the older one. Last week I left the grocery store, after a similar scenario, and decided I should have a shirt made for Isaac that reads,

I'm two years old. 

I have delays

But I'M NOT A BABY! 

He's not a baby. Get it. Got it. Good. 

He holds a pen like a two year old. He can sit still and have one book after another read to him. He can point to almost any object in a book. He understands games like hide and seek. When playing catch, he will look at me, and then look away, and purposefully throw the ball away from me and burst out laughing because I have to go get it. Walter was chasing him around the living room, and Isaac would stop and point at the ceiling for a minute, I asked Walter why he was doing that, and he said he was trying to divert his attention, so that he could scoot away really fast. A baby doesn't do that. He knows and understands more signs that most two year old kids. 

I could tell you all of the things he doesn't do. All of the things that make me sad. But I won't do that, because I'm not sure there's a point. 

Anyway, that's my rant. I could go on, but you probably don't want me to. 

Lastly, my conversation with Isabella while in the car today:

-Mommy! Did you see that dog? It was really close to the road.
-No, I didn't see it.
-Did you know, there is such a thing as an Invisible Fence? Really, there is.
-I believe you. That's what Gar and Papa have in their yard for Molli.
-What kind of dog is Stella?
-She's a mutt. That means her mommy and daddy were two different kinds of dogs. Both of Molli's parents were English Cocker Spaniels, so she's an English Cocker Spaniel too.
-Well, what kind of dog was Stella's parents?
-I'm not sure because we adopted her from the Animal Proctection League.
-Wait, you mean that you and daddy were hunters?!
-Um, no. I mean that some nice people rescued Stella from the side of the road and took her to a safe place, and then we got her.
-Oh. What happened to her mommy and daddy?
-I'm not sure.
-They were probably already dead.

And there you have it.