Less than 72 hours

We will have the first IEP meeting for my youngest with Autism. She'll be starting Early Childhood preschool after she turns 3 at the end of May. We expect the school district to "let her fail" Or I should say "let themselves fail" until we get to the point of a due process and force her out of the district into a special private school. What we would like to happen is to come into the IEP meeting Monday afternoon and by the grace of God they tell us from the very start, "we can't handle her needs and we'll place her in out of district school." We can dream right? My best friend said if they allow it right off the bat we better go play the lotto because it's extremely rare for them to go from the get go say "we can't handle her needs."

In case we get a miracle on Monday that they'll go for out of district the little one and I went on a tour of a private Autism school about 40 minutes from our house. That's a general minimum time it would take her to get there on a bus. The only two ways to get there are both under construction. Awesome.

My first impression upon walking into the school is a stark new reality. Twenty years ago these kids would have been in an institution and they would have been considered mentally challenged. Today we don't have enough schools for our children. This school is already on it's 3rd building and they have already out grown this building they are in. Oy.

They have one on one aides, multiple therapists, dim lights, a sensory room, a huge trampoline and huge gymnasium. The school is for all ages but starts with Early Childhood preschool which many schools do not. Another thing about the school is that it is an all day program 8:30-2:45 and year round.  Wow. It would be intense therapy with academic learning. All in all it would be a blessing. We hope like most parents ( I think ) that she could mainstream one day and that is part of the goals they will work with her on.

Knowing what is out there compared to what she is going to get just leaves me with a sick feeling. The sensory room at her future school is the size of a janitor's closet. The sensory items won't even be moved to the summer school building. Obviously these things by law have to be met. Will they be met in 3 weeks time? Don't know.

My husband tells me not to worry about things until they happen but um HELLO who is the one researching the schools? No not him because he works two jobs. It's me. I get it. I'm the stay at home Mom and that's part of being a glorified secretary.  I worry because I want the best that is out there for her.  I worry because I want to plan.   I want to know her schedule will be so I can plan for her sister as well. I don't want her getting the shaft this summer with not doing anything fun. I don't like living with uncertainty. It raises my anxiety and that makes me an unhappy momma.

***

This week though I got to be room Mom at her little school for the last time. They celebrated her birthday the day I was there though I am a lame ass and didn't get the birthday goodie bags done til tonight. So I'll send my friend with a bunch on Monday while we are at her evaluation and IEP and I'll drop the rest off on her last day of school. 

I kinda of went all out on these goodie bags. They are kinda of a mix of Thank You for being my friend understanding why I don't have my words and Happy Birthday. So the boys stuff was pretty easy, thank you dollar spot Target. The girls stuff was even more easy since my husband works for a national company that caters to lo and behold little girls/preteens. So they get some pretty nice stash. 

But I included this note with the bags:

I have Autism. Autism is a developmental disability that affects social and communication skills. Children with Autism tend to behave in an odd and unpredictable way as a result of their disability. Thank you for being understanding and being my friend.

Avery and her family

Am I apologizing to them for her Autism? I feel like I am a little bit, but also feel like I'm trying to say, "sorry my kid was a PITA and threw tantrums any time your kid came near mine and made your kid cry all year." All the parents have to volunteer each semester so the parents all have had some type of contact with my little girl. Also one of my friends has a daughter in the room with her on one of the same days. So when she's been room Mom it's been a good thing. So her little one is getting a really good bag ;)

So on Thursday I got to see her follow the schedule. Which at the beginning of the year would have been hell. What triggers her days where she has meltdowns? Don't know.  The day I saw her she was in a good mood and they have learned to just let her be to avoid melt downs. 

A few months ago she would have flipped if there was another kid near the tunnel much less 3 of them smooshing themselves into the tunnel with her. This day she was ok. She just waited them out til she could have the tunnel to herself. 

At snack time they sang Happy Birthday to her and gave her her certificate and I was able to catch a great smile from her.

I don't know if you can tell but she doesn't sit at a table with other kids. :( She sits in her Fisher Price space saver chair in the corner with her pretzels and sippy cup. She has her lovie with her at every class. The fact that she doesn't sit with other kids has always depressed me but I know for her she's ok with that. She likes her space and doesn't have to deal with the mindless chatter *snort* of the other little kids. 

I have to give kudos to her two teachers because they didn't sign up for a kid with Autism this year. It's been a work in progress and they have been more than willing to work with her. Now she's more of a handful because when she has meltdowns now her weight hinders them from helping her fully. I kept her in the class when there was plenty of times we could have pulled her from the class but in my heart I knew this might be one of the last normal classes she participates in an awhile.  Hopefully one day she'll mainstream back. Can only pray she does.

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."

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.