Monday, April 25, 2011

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."

Friday, April 22, 2011

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!

Sunday, April 3, 2011

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!

Five things for Friday

1. I started physical therapy for my foot/ankle this week and will be maxing out the times per week (3x) in order to help things get better. The facility I am going to is brand spanking new and not overcrowded like another place I went to last winter for my hip that subsequently laid me up for a few weeks. So fingers crossed everything goes well.

2. I've had to start a new diet the last few weeks. Some blood work came back a little off the charts and whamO I have to change how I eat entirely. Cut out grainy carbs, salt and a few other things. I can handle it for the most part. Unless I have something that is stressing me out. For instance my father came over to watch the kids this week so I can go to a follow up appointment with the dr and we got into the conversation about him not congratulating me on the marathon. Yes. My father did not congratulate me on the marathon.

Now my father just turned 69, is very, very old school and set in his ways. He has always thought that my running was a terrible idea. Basically in a nutshell unless it's something my father approves of he won't support me. His words to me as I was walking out the door to the dr's appt was that I should only be "focusing on my girls." That's it. Only be a Mom. And apparently my daughter doesn't have Autism (he doesn't believe the dr's) So if I concentrate my life 100% to my kids then my youngest will snap out of it and all will be well. Even after a lifetime of dealing with this type of antiquated attitude it still get's to me. So that night after I told my husband who responded "did you expect anything more than that?" I guess somewhere, somehow in my head I hoped he would pull his head out of his ass. *sigh* So that night I fell off the diet wagon. And felt extremely guilty about it. I don't like being an emotional eater. I need to find a way out of it because it will curtail any Winter of Weightloss goals I have.

3. Then this nearly sent me off the edge on Wednesday. It's been extremely windy where we live. Apparently the worst storm in 70 years. HA HA NO. I mean we had some rain but it was actually the wind that was the worse. Because around 4pm I saw my neighbor walking over to my side door and as I passed my back window I caught a glimpse of our 6 foot privacy fence....see where I am going with this?




Yup right smack in the middle of the property line, the fence snapped. When the wind blew it pushed the fence within inches of my neighbors beloved garage. I say beloved garage because the it's bigger than his house, it's heated, and he keeps his roaster out in it. Like a big pit roaster, his chickens he cooks are awesome. Of course my husband was at work over an hour away at his new job. So he couldn't leave early to come home and secure it. So my neighbor came over with his two son's and secured it for us. I really lucked out in having helpful neighbors. To add to this roof shingles were flapping all over the place and tore off in some places on the house. Awesome. After the big flood this summer I think the house is telling us "GET OUT".

4. My youngest had her first Halloween party at the parents day out program she attends. Things have been iffy with her at "school" because by a certain point in the day she is basically done. We've helped her out by giving her a weighted vest to help calm her down and give her her blankie to have while she's there. The last few times I've had good reports. The Thursday class is the hardest because it's younger kids who don't understand that she might need more help or to leave her alone and let her calm herself down when she's upset.

So like what I did with my older daughter when she attended the program, I was room mom helper that day along with another Mom. So I got to see how she is first hand for a long period of time. I could see some of her issues with how she behaves, but also some positives about how she's interacting more with other adults and kids because we've seen that over flow with her therapy.

By the end of the day she was basically just done with everything and couldn't even enjoy the carnival games they do for the kids in order to get treats and pretty much was just throwing herself on the floor. sigh. It is quite overwhelming as all the kids from the other day classes start coming in with their parents and it's a lot of people in not a big area but it's very chaotic and my older daughter did better when she did this but didn't transition well from leaving it all. I've been told even the 'normal' 2 year olds have a hard time with it.  As we were leaving my friend and his daughter who is in her Monday class came in and at this point we just had to say good bye and I missed a chance of trying to get a pic of the two girls together in their costumes. :(   The meltdown lasted til we got in the car and she sat stoically in her car seat just looking out the window on the way home in her ladybug costume as if nothing had just happened.

5. Later that night my older daughter had her Parent Teacher Conference at school. I wasn't expecting anything bad because her reports coming home every day were very good. The reports were of course excellent! They tell us she is their star student because she does so well and is a peer model for the other kids. She of course listens to her teacher and all the therapists and follows directions. Basically she is an all around great kid and they love having her. She has already achieved goals they hoped she would have reached at the end of the year. Yay!!! They told us the story of how another little kid was saying he had to go potty. Apparently my daughter just turned to him and said "Well just go then!" My husband turned to me and started laughing and pointing at me. * Snort * That's what I tell her all day when she announces she has to go potty. I was beat red and we had a good laugh with instructors. That little stinker doesn't listen to me for anything else but this she picks up!!