1 in 50

I saw it last night.

The articles started to come through on my Twitter feed.

The new "new" Autism numbers are out.

1 in 50 school aged children have Autism. A survey of parents conducted from 2011 to June 2012. A phone survey of 100,000 parents across the country (not just 14 stupid states like the previous survey). It focused on children age 6-17 years of age whereas the previous study started at the young age of 8 years old. For reference my daughter was diagnosed at 28 months of age. There is no data for very young children like her. Apparently little kids according to the CDC are not being diagnosed like 6 year olds.

From National Autism Society

I know I talked about the numbers they released last year on the blog but I can't seem to find the post. I do remember saying that we (general friends and I) thought the 1 in 88 was to high. uh huh. Are today's numbers more accurate? Maybe. The only way you can get accurate numbers and only true way is that every DR who diagnosis a child on the spectrum has to report it to authorities like they do with a gun shot wound or to have people register. Which I doubt would happen ever.

I can put it in a different perspective for you though. Yesterday I visited a private school for Avery. When they started their program for Autism they had only 6 kids. Ten years later they have room for only 75.  It's a lovely program and I can see her doing wonderfully in this program. I have two more to look at before we start to make a decision.

So I won't rant and rave anymore about the numbers.  Do we need answers? Oh hell yeah. Do we need a federal mandate for insurance coverage? HELL YEAH! So please if you can do two things today. Please take a moment to make a small donation to Organization for Autism Research aka Run for Autism. Secondly please take a moment to sign the petition to get the government to develop and implement a comprehensive national plan for Autism.



Please make a donation to: Run for Autism - Team Avery

Please sign the petition: Develop and implement a comprehensive national plan for Autism


Thank you.

Monday photo dump

These couches in the family room at little one's therapy place are sooo comfortable. ZZZ's.

I don't know how they do this at school. But she came home like this on Friday. So stinking cute!! And she hardly has any hair left to!

This is so true. And so proud of that!

I went to add something in my countdown APP on my phone and saw the 3,359 days since and had to think what it was. It was the last day I heard my Mom's voice. After that day she wasn't conscious again or she was intubated and couldn't talk. :( I only remember the day because it was my parents 40th wedding anniversary. :( boo. Well that's a downer...

No we don't have a dog. That handy work is from little one. Oh don't worry it's been coming out all on it's own.  That old theory if the children are quiet then be worried holds true.

While day light savings time can go suck it when it comes to screwing up my kids schedule. It really produced a wonderful sunset last night.

So since my gym membership expired and I'm not sure if I can get another one I used a GC from my sister to get a weight bench. I didn't even pay close to that sale price so it was all good. I picked it up this morning and maybe I will put it together tonight.

I need a dutch door installed in our house. Except ain't nobody got time for that here apparently. My Dad's busy, my husband is super busy.  The doorway is kinda of crooked esp since this house is from the 40's. This is the only way we can keep little one out of the kitchen. She can climb the installed swing gate. I can't go into another room without wondering if she's in the kitchen creating havoc. She's not really almost 5 but I would say about 18 months. And if you have kids you know exactly what I am talking about. ;)

I originally was going to title this post Honey Badger + Autism but I figured some people might not know what I was talking about but if you don't go watch this not safe for work language video on Youtube.com




That's sometimes the inside joke between my husband and I. We know if she wasn't autistic she would give a shit. But she's sometimes so angry/crazy that she's "honey badger don't give a shit".  Her mind doesn't work like mine, her sisters or her fathers. She gets so angry about not being able to communicate that the person who is trying to help her the most (me) get's the brunt of it. I was kicked and punched this morning trying to get a diaper on a kid who knows how to hold her urine but is terrified of the potty. Then I don't know what happened with getting on the bus but she wants nothing to do with that part of the day. For the past 2 weeks I've had to wrestle her to get her coat and her harness on and carry her to the school bus. First Then cards are helping but she's pissed about something and she can't tell us.

I'm angry at the world as well. I thought about all this while at the specialty store looking for something that she might eat the other day. I take care of her, her sister, sometimes her father but nobody takes care of me. When will that day come? Well since it's not on anyone's priority list it should be on mine. Right? At least that's what I tell myself but somehow I talked myself out of it today and I ate crap for breakfast and I ended up only having 4 points for the rest of the day at 2 pm. That's not exactly great planning. That's a rarity to. I normally don't blow my points for the day until the hour before dinner. lol

But being angry at the world doesn't help. All it does is fuel my desire to help her in any way we can. It does help to joke about it sometimes so we joke about her being all Honey Badger like sometimes. Because sometimes you just don't give a shit.

A few updates

I know I'm not posting a lot but I've had a very crazy week here.

Last Thursday we visited a school for Avery that she could start attending right away if we liked it.
Her teacher and her occupational therapist joined us on the tour because we wanted their opinions on what type of environment would be good for her. Plus they needed to visit it for future reference for other kids. In our opinion the facility is best for very severely functioning children and adults. It just didn't feel right for her.  Plus the switch would only be for a few months as this facility wouldn't have a specific dedicated Autism program for her to be in.  The idea of all day school was enticing but not at the cost of breaking up her normal schedule right now to change it in a few months. We crossed it off the list.

I had talked recently about how Avery has been very difficult recently. To the point even her teacher was asking what was happening at home. oy.  On the second day at my new job while I was working on some computer based training I got called twice on my cell by a number I didn't recognize. I hit voicemail and figured I would get it later. Then my husband called my cell. Damn, it must be important. He was calling because the school nurse was trying to get a hold of me to come pick Avery up because they thought she had hand foot mouth disease. umm great. When I went to pick her up I could see the redness in her hands that they talked about. We talked about her behavior recently and that she even punched her aide that morning. Another oy. When I got her home I really couldn't see what they were talking about. When we got to the Dr's office the Dr basically said well it doesn't come and go so that wasn't it. BUT she did get a look into Avery's ears and one of them had an infection!!!

The past 2 weeks where she was just insanely bad behavior and CONSTANT stimming by spinning was most likely the ear infection!! She had no way to tell us it hurt. She nor her sister were ever the proverbial "ear tugger" sign of an ear infection. We started her on antibiotics that Monday night, by Wednesday the spinning had calmed down tremendously! This was part of the reasoning of not sending her to that other facility now. Her teacher and I both noticed her stimming had calmed down a lot in the last few days and I would have hated to move her to another school when it really was a medical reason for her being so disjointed.

We do have 3 other schools to visit in the next few weeks. Two of them she can't attend until she is 5.  The other one she could attend now if we think it's a good fit.

A new path

I'm not sure if I wrote that we were having Avery's annual IEP this week.  In fact I commented to my husband that this was really early for her IEP since last year we had it in March. In May she will be 5 and will go on to "kindergarten". When the paperwork showed up at our house it listed the kindergarten teacher for our oldest daughters school. It is our home school. So basically she would show up and go into agreement and say that that the home school is not the right place for her. Avery is basically in an out of district placement because while we have two schools in this one town they are two different school districts. So when the paperwork showed up and listed that teacher I thought well that's crazy she's not going to that school like ever.

But something happened between correspondence between her teacher and I in the last few weeks that made me think about what was going to happen. Her teacher kept mentioning options. Now she's special needs. She is nonverbal Autistic. She has severe sensory issues that impede her ability to learn and function. So when they mentioned options I thought ok we are starting the process early so that we can investigate a good out of district placement for next year.

What actually happened at her meeting yesterday shocked me.

As the group was discussing how far she has come I started to get the feeling that something was off. The previous above mentioned Kindergarten teacher wasn't at this meeting. Then they started to talk about how while she has made progress it's not the type of progress they thought she would be at by now.  Wow.

They talked about how her sensory issues are so much more profound in the last 8 months than they ever were when she first started. How frustrated she gets, how angry, how violent she is towards herself. These are things that are occupying her days. That they don't have the right tools to help her.

They believe the right environment for her would be a full day program. Like NOW.

As in there is another school we would like you to look at and if you approve we would like her to go to that school for the remainder of the year.  If you don't approve of it then she would continue at her current school until the summer when she would then progress at age 5 to kindergarten. *I had asked about one for her when she first went into early childhood preschool but they wanted us to give their program a chance and there really wasn't any options around. Most private schools won't take kids until they are 5 and in kindergarten. ** we also acknowledge that we are very lucky to have a district that says "yes we can't support her and we will put her in private placement, that's rare. This then leads also into her placement for next year with a full day Autism program at a highly respected private school.

My husband and I will be touring the other facility tomorrow am. There is currently one other little kid in the program that she will be in and that little girl is the same age as Avery.

We've always said Avery needs more than what she was getting at school. It's not that it's a bad program it's just not the right program for her and her cognitive delays.  While I am looking forward to her getting more services that she needs I am also really afraid of how this transition to a new bus, new school, new teacher, new and longer day will be for her. It's a lot of stress for her (and us).  I also hope she doesn't feel like her "school family" abandoned her either. Sigh.  Also the guilt that we haven't done enough for her is at an all time high now because of this. It's not the schools fault they always prop us up and tell us we are doing a great job etc but it's still disheartening to hear what was said yesterday.

Taken in early 2012

So that's where we are at now. Probably a new school for Avery within the next couple of weeks. So if my posts are not abundant in the next few weeks it's because well, life just got in the way.

Don't Stop Believing

There are days I hate Autism.

I do. It riddles my little girl with anxiety and frustration. Sometimes she can be so unhappy she takes it out on herself or me.

She's 4.5 years old and scared of the toilet. We are working on it because we know she can hold it, she tells us after she goes but the whole sit on the toilet scares her since they are so freaking loud to her.

She can request certain food and drinks on her communication device (IPad from the school district).
Though now most of the time she just tells what she wants but doesn't understand if we are "out" of something.

She knows her routine at therapy when she see's her favorite person Julie who is a million times more patient with her than I can be at times.

Sometimes the daily notes from school are depressing as can be. She threw this, she refused to come to circle, she ran down the hall, she just laid on the floor. My favorite from a few months ago "She told a bunch of kids to shut up!" That is quite funny actually. See her big sister from the minute she wakes up until the minute she goes to sleep is nonstop talking. Basically she narrates her life. She sings it to. Which kinda of makes up for Avery not talking like a regular 4.5 year old.  But if you are a kid who doesn't like a lot of interference it can get annoying so one day she had had enough of the background noise at school and told the other 4 kids in her class to stop talking in a not so nice way.

But there are days though that Autism can make me celebrate the little things.

The daily notes from school talk about the daily exercise to write their first names. Some days she does it with hand over hand help. Other days she could care less and won't even go to the table to do the activity.

So today we were waiting for the bus at the back door and with the temperature being zero the window was pretty fogged up.

I started writing the letter A and hoped she would follow and write A instead she said V! So I asked her what comes after v? She said E! I asked what comes after e? She said R!! I asked what comes after r? She said Y!!

That's right Avery, AVERY!!!

It was a reminder that sometimes I need to stop focusing on the stuff she can't do and be grateful for the stuff she can do.

Routine, repetition, social stories, therapy, communication devices, early intervention, biomedical therapies. Just a small list of what we do for her on a daily basis.

A donation to the Organization for Autism Research would help with more research into treatment options for kids like Avery. Please if you can today spare a few moments and think of making a donation to
 Team Avery - Don't Stop Believing

Some day somewhere thanks to a donation to help fund Autism research another Mom or Dad or caregiver will have that joy of seeing their child have a great moment like I did today.

Oh I'm Sorry

hmm. I keep hearing those words played back today.

Today we took the kids to the grand opening party for a new trail in our Forest Preserve system that's only about 3/4 of a mile away from our house. A whopping .3 mile long trail.

For us it was a big deal to get even out of the house. Avery didn't want to get in her stroller. She wanted to be in the back yard. She was mad, screaming and kicking me. I didn't back down though. We were not going to be housebound again. So I started to walk while carrying her. All 32 lbs of her. We were only 2 houses down from ours when she was screaming in my ear and I could hear my husband go "This is crazy" and wanting to stop and go home. I said "No we are going". And we went.

A block down I put her down so that she could pick some flowers aka weeds. Then I picked her up again for another two blocks were she was calmed down enough for me to get her in stroller. Another 2 blocks and we were at the trail finally! Success!

At the trail they had a bouncy house and a big giant bouncy slide, a band and a huge tent with kids activities.

While going through the tent of kids activities she did pretty good. She made a potted plant, threw some rings to get a ice cream voucher and made a bracelet. When we got to the station to make a coffee filter butterfly the volunteer was so nice. She was chatting her up and asking her name. I knew Avery wouldn't answer so I explained that she was Autistic. Then I heard, "Oh I'm sorry". Followed by compliments about how pretty her eyes are, how cute she is, etc.

I thought about it later but I get why people say that. I probably said that years ago to.

When I look at her I am so happy that she is who she is in the sense that she is perfectly healthy and is becoming a little person who is learning to tell us what she wants. We are blessed. 

Today was a great day for her. When we left the trail party we went to McDonald's at the end of the trail. The first time ever eating in the actual restaurant!! Both of the girls were happy!

Avery had ice cream as well today and I helped her with it. She kept saying, "MY ice cream!" "Mine!" So stinking cute!! She did really well. She ate half of her lunch which considering she was in a completely new environment and was watching everyone around her was pretty good. She transitioned out of the restaurant well to!

It was just a pretty neat day!

Don't forget that if you can it would be great if you can support me in my Run for Autism by making a donation HERE!!!

Run for Autism Fundraiser

I started this post a few weeks ago...

Last night we had bad storms come through our area. Hardly anyone got any sleep and I should have known that the little one would be up early today. I did my normal Saturday morning routine of getting ready to go to my Weight Watchers meeting. I then headed off to my meeting and came back home pretty much right away since we were having a friend come over to help my husband with his truck.

As I walked in the back door I heard a "Mommeeee!!" I knew immediately it wasn't my oldest but the little one!! She started screaming for me and running to the door. That was awesome. I ran up to her and gave her a big squeeze hug and had lot's of tears.

***

What a difference from last year to this year.

A year ago my little one would not have recognized I even left the house much less reacted to my return.

A year ago the only word she had in her vocabulary was probably "NO!"

A year ago the ability to transition from activity to activity was so horrible that I just expected screaming and tears at every turn.

A year ago she had no sleep issues and slept all night for 12 + hours.

A year ago she didn't know her ABC's.

A year ago she didn't know her numbers.

A year ago she couldn't point to what she wanted.

A year ago she couldn't tell me what she wanted.

A year ago she didn't call me Mommy.

A year ago she was so insanely frustrated with trying to tell us what she wanted that she would hit her head all the time on anything.

A year ago she never could express how she wanted to be twirled or held or swung on her swing.

A year ago she couldn't communicate with anyone at all.

Now she can use her communication device to tell us what she wants or needs.

Now it may take many cues but she can transition better through her daily activities.

Now she has a vocabulary of about 75 words that she may or may not use when needed.

Now she knows her ABC's and can sing them.

Now she can recite her numbers up into the 20's.

Now she points or leads us by the hand to what she wants or needs.

Now she can call her Dada, her sister (sometimes) and once in awhile I will hear Mommy in between her jibber jabber.

Now she will take my hand and wait for the bus nicely but will get distracted if there are flowers near by.

Now she has made it through a school field trip at the zoo that I never thought was possible.

Now she takes the leading on going to bed, she may fart around once in bed but compared to the issues we had last winter it is not a problem.


While she still has a way to go she is doing so much better than she was a year ago. Like other little 4 year old's she loves The Smurfs and the bird movie RIO. She loves birds so much that she has quite a collection along with fake flowers that she loves to carry around.


This year I am doing the Chicago Marathon and raising money for Run For Autism. The Organization for Autism Research focus is on applying research that directly impacts the day to day quality of life for those with Autism. The organizations research is based around education, communication, self care, social skills, employment, behavior, and adult and community living. 

I am raising money through my running blog that has give aways as well: 

If you want you can just donate here!! 

Or

You can go to my running blog Baby Weight My Fat Ass  and enter the give away after making a contribution to my donation page as there are some prizes that aren't related to a running enthusiast!   


I understand that raising a child with Autism is expensive and we all look to keep our money close to home but I believe in the research that has helped my little girl make great strides. Any amount of a donation would be wonderful!!


Thank you!