I just want her to be my friend...

That's the oldest this morning.
Talking about her little sister the one with Autism. She even goes to say but "I was spinning her!"
Yesterday I caught them in a moment. One of the few moments where the youngest will submit or want to be near her sister.

They were watching Tangled for the upteenth time while I was getting lunch together. I walked in on this little love fest. We rarely get smiles out of the little one. At least for pictures because we all know how kids on the spectrum just love to be told what to do sometimes. This was the closest I could get to a smile yesterday:

So of course the older one who has a habit of looking in the opposite direction when asked to look at Mommy worked her magic. Though I really think this is normal for toddlers in general. I think you either need a bubble machine or kitties and puppies and rainbows before they can both look and smile at the camera at the same time.

We haven't had professional pictures in a long time and although I know my friend who does our photos would do great, I just envision melt down city. I mean it could very well look this picture:

And that's of the oldest daughter who doesn't have Autism. Meltdown forever saved in time. LOL.

The Big Switch- An Autism Kid Friendly Room

We switched our daughters rooms this weekend. It only really made sense since Avery has all of her therapy items in her sisters room that it would become her room and her big sister would get herself a big girl room.  It's been a slow process doing things a few items at a time. 

Today I finally got the beds moved. Chaos shall ensue.

 Cocoon swing from Ikea (they no longer sell but you can search Ebay),  trampoline we received through the state and cube chair table was also something we received through the state.

The toy storage area with changing table. 

Crib tent with sides for safety reasons. Our daughter liked to hang her legs through the slates. Then she would fall asleep with them stuck so hence the screens to prevent her from doing that. Also in her crib are different textured blankets that she uses while in the crib. From soft and satin, to chenille to velvet.

The bean box is a big therapy item we keep hidden in her closet or under the train table. If we don't, we have beans everywhere. She loves it and gets the most out of this one item. 

Before I could finish cleaning up her old room, her and her sister had managed to climb into the crib. Joy! They were very proud of themselves and didn't understand why we were not so happy with them.

I hate Autism.

I haven't gotten to the point where I can embrace it for all that it is.

It basically fucking blows.

My oldest daughter doesn't get a normal playmate for a sister. In fact though she's a great kid, it's like she's the third parent in our house and not by choice.

Mom!- Avery's spilling her milk on the couch again.
Mom!- Avery's got the remote for the tv.
Mom!-Avery's doing something she's not suppose to be doing ______!

I can't be in the same room as them all the time and though our house is like a deluxe apartment it's that small I still can't have my eyes on her at all times so I am grateful that my oldest see's things that are wrong and reacts and let's me know.

Maybe that's part of being a normal big sister but she never gets to say:

Mom!- Avery just shared her animals with me!
Mom!- Avery just gave me a big hug and kiss!
Mom!- Avery just told me she loved me!

She doesn't do any of those things with me either honey.  I'm sorry. I wish she could. I'm sorry you told me last week that Avery is your best friend because she can't express that back to you nor would she know what a best friend or even a friend is.

I feel bad for her. She's missing out on a normal childhood. I mean really what is normal these days though? I see kids who get to participate in classes together, take swim lessons together or just play normally together. They get to share memories together.

What does my oldest get?
So and so therapist came today to play with my sister again.
Today my sister was having a very bad day and we had to pick her up from school early.
Today Avery is still doing that thing where she's spitting the milk out of her mouth after swirling it around for a bit and making a big mess on her shirt and the couch.

While I worry every day about how Avery's placement with the school district will go (pray, she goes to a special school!). I worry every day about the affect on our oldest. When I am trying to deal with an Avery melt down sometimes the oldest needs attention and well she just kinda of has to wait it out. Which have you ever met a patient 5 year old? Yeah didn't think so.

Obviously our lives don't look like a spread in Parents magazine. I would imagine that most people's lives don't.  Which is probably why I stopped getting the magazine a few years back. During the month of April if you live under a rock it's Autism Awareness month. And Parent's magazine did nothing in the print magazine. Though once they found out that the Autism Mom community was quite enraged about it they decided to put some articles online including this one that get's dissected here: Butler Way: Parent's Magazine Fail For Autism.  They could have done something besides the normal signs there might be something wrong type of article because really all I would have done to follow up on that is comment, "Trust your instinct! If something is off seek out specialists to either qualm your fears or verify your child's needs." Because once someone reads "those signs" articles they start to ask their friends with normal kids who say, "Oh they'll talk when they want to, Every kid develops differently it's ok if they don't start walking to later, Hey that hitting  of the head oh that's such a boy thing don't worry about it! or the more famous one is Boys will be Boys!"

What I am really grateful for though is that my oldest had her own issues to begin with. She had a global developmental delay. So she needed help in all areas but other than that she's pretty much a rock star kid. She'll be going to normal Kindergarten in the fall and still get some services. BUT if it wasn't for me going "something is not right, why can't she say hot dog" and asking her pediatrician (who respected me as a parent and said, let's get her evaluated instead of brushing me off). If it wasn't for me already being aware from our first daughters issues we might not have gotten as early of a diagnosis of Autism with Avery as we did.

Today I was asked what Avery's future prognosis is. I couldn't answer the person. It's to early to know if she'll mainstream or heck even what early childhood preschool program she'll be entering into this summer. I basically just shrugged when all I really wanted to say, "Fuck if I know."

Freakin Friday

The weather here is frightful not at all delightful.
And that's about all you're going to get out of me that rhymes together.

Yesterday the husband and I had a meeting at the school district about our first born and how she will be going to kindergarten in the fall. She'll still need some services such as speech when she starts in the fall but they told us many of the kids will be getting services still. Kindergarten at our school is only half day.  Ok I can deal with the half day.

This is the part that I probably had my WTF? look on my face when the kindergarten teacher was talking. If your child starts the fall in the morning or afternoon class, come January after winter break the kids will switch to the session they weren't in the previous semester. This is done so they can get electives that they don't get the previous semester. There is only 1 kindergarten teacher at this school so hence the break down of how the classes are. And considering NOBODY votes in this stupid little town for referendums when it comes to our schools things won't change and they won't add another teacher so this flip flopping could stop. Sigh.

This probably wouldn't be a big deal IF the youngest wasn't going to be getting on or off a bus at the time the oldest has to be starting school or getting out of school. See where the cluster is going to be? Sigh.

When we were at the school where the Autism program is conducted we had specifically asked to see the sensory room because a majority of Avery's needs are sensory related. You just can't put her in a brightly lit room and expect her to cooperate. She needs dim lights, some deep pressure on her body, in order for her to sit at a table and work on things with her therapists. To say we were disappointed would be an understatement. The sensory room is a bit bigger than a janitor's closet. They only have a few things Avery has at clinic now and don't have bigger things like a swing, slide, ball pit. Now obviously because what I know of our school district and tax voting body of our community I was not expecting a super clinic but I have big apprehensions about how this will work for her. Sigh.

Then we of course were told the summer program for the students will be in the same place it was last summer. The next town over at a different school though same district. So my little baby will be getting on a bus super early in the am (awesome for a kid who loves her sleep) and going over a big bridge to get to school which won't be equipped with a sensory room. Yes, this other school won't have a sensory room. Sigh.

The only way she can go to a special school is if the district determines they have exhausted all options for her. I also got the impression (but I'm probably being really hopeful here) that when she get's evaluated they could go "Oh no, we are not equipped to deal with her needs, we'll have to find an out of district school" that they'll do that before she starts at all. Instead of doing a wait and see approach. I think I'm dreaming on that because we couldn't get that lucky. All that means is outings with a district official to prospective schools and a longer bus ride for the little one. Sigh.

The teacher is going on maternity leave at the beginning of June or sooner if she has her baby before that so she won't even be the teacher for the summer program.  They have yet to find a sub for the three months because everyone is looking for a yearly position.   I have to give props to the OT and the teacher because they are very positive about wanting to work with Avery. But me the Mom is going "Umm yeah I don't think this is going to work." Sigh.

So I spent last night (instead of going to Largest Loser class) going over options for local Autism schools. My brain was wired a little differently last night because this is weighing on me because we won't have any idea of where she'll be going to school until May at the earliest when she get's her evaluation done.

Life of uncertainty sucks. But life in general is full of uncertainties but some just seem to be out of your control more than others and that's put me a little off kilter. I realized this morning while cooking (made my sweet potato enchilada's and lentil burgers) that I didn't take my anti anxiety medicine. DOH. No wonder I'm little wound up today. Sigh.

On the agenda for tomorrow? 11 Miles.

And if you've made it this far 1) you really do like reading my blog even if it's filled with "filler" stuff, and 2) I have a funny story about the oldest for you.

Apparently when you are a preschool teacher your little students think your belly is public domain and they can touch whenever they want. Any pregnant woman can attest to the fact that if a grown person would do that to a pregnant woman they get the WTF? look and probably something said to them. Her teacher was telling me how she asked to touch her belly one day. At the moment she was touching her belly the baby gave her a really big kick right where her hand was! She said the look on her face was priceless! She is in such awe over the baby. She really does talk about her teacher and the baby a lot at home so you can tell how excited she is about the baby.

Here she is after a recent hair cut. She'll tell anyone that she get's her hair cut at the mall and afterward she get's a pretzel! It really is a big deal to her. Oh to have the enthusiasm of an almost 5 year old again without a care in the world!

The numbers

So we are told 1 out of 110 children has autism. Then they point out that 1 out of 70 boys has autism. Ok let's do the math here. That would mean 1 out of 40 GIRLS would have autism right? Math was not my strong point in high school but still that's what it means right? Aren't those odds worse? Just something to think about. Maybe I am missing seeing the statistics from a scientific pov but from a Mom pov it looks like that.

April is Autism Awareness month. So you would think a national parenting magazine known as Parents would get on board and devote an issue to Autism. Right? Right. Well they haven't. They have one thing in their issue and it's something about a bed tent. Whoop dee doo. You can read the comments on the Parents Facebook page here. They have said they will have more online stories. What? Seriously this is the response to a national epidemic with our children?  I stopped getting Parents magazine years ago when I realized the magazine didn't relate to what our life was like. It's obvious it still would never be able to relate to our life.

Autism Awareness Month

Today is the start of Autism Awareness Month. Today also is the start of Light it up Blue for today and tomorrow. If you look at that list there are so many prominent famous buildings or statues around the world that will be lit up in Blue. One that stands out that's not on that list officially, The White House. Jess over at Diary of a Mom wrote a wonderful letter to the president in hopes that the White House is lit up in Blue tonight and I pray that it is. She knows the letter has reached the president's people whether or not it makes a difference we won't know til later tonight.

A year ago I would have acknowledged Autism Awareness Month. Would have I searched store to store for blue light bulbs? Probably not. (FYI - Finally found some at Walmart!) Today I live with Autism every day. Every day I think about how our lives are different now, how our future is not certain but our spirit isn't diminished. I have a little girl who is learning to roll her arms to Wheels on the Bus, and going Wah Wah Wah when the baby cries on the bus. I have a little girl who learned to spray herself in the face with a spray bottle at therapy and giggled her little heart out. I have a little girl who still loves to cuddle with her Mommy before bed time. Though that little girl has Autism she will always be my little girl.

You can make a difference today. In honor of Autism Awareness Month I am asking for you to make a donation to Team Avery - Don't Stop Believing today. It takes a couple of minutes and you can donate any amount you like. Every day, every dollar is a step closer to helping 1 in 110 children, 1 in 70 boys and 1 in 88 military children get the help that they need. 

Team Avery - Don't Stop Believing

Well last year at the marathon expo we came across an Autism research group. We had just found out Avery had Autism and I already knew that when I ran this year that I would be raising money for Autism. So I looked at many groups. I do mean many groups. Which is depressing in itself that there are sooo many different groups for Autism research.  I decided to go with Operation Jack and create Team Avery. When I am done raising my money I'll get to choose which Autism group to donate my money to.

Some info on Operation Jack and how it started:

Operation Jack will be an attempt by Sam Felsenfeld to race at least one marathon a week in 2010 (61 total for the year) to generate attention that will raise funds and nationwide awareness for Train 4 Autism, an organization that works tirelessly to raise money for Autism charities.

I just want to run 1 marathon this year and that's a return to the Chicago Marathon. Well I might want to run more than one but I don't want to jinx myself so I'll keep it in my itty bitty head for now. ;)

Why should I have really called it Team Stinkerbutt? Because the kid is regular. Like really regular. lol. I can ask Paige if her sister has a bad diaper and she'll go "Yes she stinks!" lol. She is a stinker in general to. One day you'll be fussing that she's not doing something and next day she'll start doing it.

Unlike when I raised money for the American Heart Association last year there was a minimum donation online of $25, with Operation Jack there is no minimum so don't be afraid to say I only have a little to donate because I know how hard it is these days. Just know that whatever you donate will go to a great cause to help raise funds for Autism research.

So if you can today please click on Team Avery or Team Stinkerbutt's donation page  and help me get off to a great start with a donation!

Thank you so much!