AutismOne Conference 2013

I spent last week getting myself situated for school this summer. That means I am officially signed up for two online classes this summer. Then in the fall I start a full load. Brain don't fail me now!

I spent the first part of the week getting my house situated for me to be gone for 2 nights and 3 days at the AutismOne Conference at the end of the week. This was the first year I knew about a grant that gives attendee's money to attend the conference and I took advantage of it. Though next year I plan on figuring it out better. Oy. I hate hotels. More on the conference in a bit.

On Monday the oldest received a reading award at school!! She had to work very hard to improve with a tutor with reading.

On Tuesday I finalized my classes for summer and fall along with my financial aid.

Wednesday I went to Weigh In at Weight Watchers since I wouldn't be home this weekend to attend my regular meeting. I was down 3lbs! Woot! Finally the right direction.

Thursday I left to attend the conference. There was so many great speeches but it's hard to pinpoint what was my favorite part  of it was.

On Friday we sat in on a speech by four members of Congress. Rep. Dan Burton, Rep. Darrell Issa, Rep. Bill Posey and Rep. Dave Weldon MD. I have pictures of this, but we weren't suppose to take pictures of this talk because of security (like a cop was ready to pounce someone for getting reallyclose to Issa) and some other stuff and the pics are not great.  Although this was a great part of the weekend I have almost no faith in congress to actually get shit done anymore. That pretty much sums up my feelings on that.

Then we skipped out of that place and headed to a new favorite place for lunch!

I finally made it to Toby Keith's I Love this Bar & Grill in Rosemont. The food is typical bar food ( no issues there!) and the prices were good considering the conference center location.  I paid $14 for a crappy ass panini at the hotel restaurant the day before but I paid $10.99 for a bacon cheeseburger that was cooked exactly the way I wanted it.  Four dollars for a Miller Lite (12ozs)  compared to $6 the day (bottle!)  before at the hotel bar. The service was pretty good and really friendly. Since it's all females in tank tops and shorts I was kinda of worried about that. Sometimes we've been to Hooters and the girls are just so not nice to you because they think you won't be good tippers and they are mentally prepared for guys, kwim?

The place itself is HUGE! Two floors and a big stage area. We were told when we went back on Saturday (snort) that it is the largest of the restaurants and this one is owned by a corporation whereas some of the restaurants with his name are franchised.  My oldest is upset that I went to his restaurant without her and I told her I would make a special trip up there in the summer when her sister goes to school full day just for me and her to hang out. She is really going to have to twist my arm to go again!

Late Friday afternoon/early evening my friend Jurgita and I attended the speech by Robert F Kennedy Jr. That speech was so wonderful that I can't even begin to describe it all.  That's horrible isn't it? I can't put into words what I heard or felt besides just using the word: wonderful!

I stayed at a hotel that was about a mile away from the primary hotel to save money. I even walked back to my hotel both nights. Haha. I averaged about 5 miles on Thurs, Fri and 4 miles on Saturday just from walking the conference.  In the end I got screwed by something at the hotel I did stay at and I still have to have them fix my bill! Hence me hating hotels now.

Saturday was the final day I was staying up there. I have never been there for the keynote speaker address by Jenny McCarthy so this was a first. It was worth it! Say what you will about her, but damn it she is living my life (except with great makeup, a skinny bod and a lot more money). Her special guests this year for the panel were: Miss Montana Alexis Wineman and Real Housewives of New Jersey Jacqueline and Chris Laurita. I knew who Alexis was and I had a vague idea of the RHONJ couple. I do not watch those shows but through magazines and friends I knew they had a child with Autism.

It was a really great panel. To hear Alexis speak about growing up and how she stims today was really refreshing.  She gave me great hope for Avery. The Laurita's were really down to earth and when I spoke to them later and got a picture with them (don't have it yet it!)  she seemed very relaxed and soft spoken but you can tell that they will do anything to help their son.

Me and Miss Montana Alexis Wineman. 

Til next year AutismOne!

Sleep issues and life in general...

I think it's been about 3 week since I posted. My last post was about the 5k I had done and then I went quiet for awhile.

Do I want to blog? Yes.

Do I have anything positive to blog? Hmmm probably not hence why I went quiet.

It's May. The time of the year I used to normally enjoy. It's my birthday month.  Woot! It's also Mothers Day. Which this year the loss of my Mother has saddened me more than in years past. I was pretty much a hot mess crying on the treadmill at the gym last week.  How would you like to be running next to that gal at the gym?

Yes I mentioned gym twice. I now belong to a new gym in town. In fact it's a national chain. And you've probably seen the really annoying commercials for it on tv lately.  Planet Fitness is cheap, nice and updated (well it should be since it's brand spanking new!!)  I've been there a lot in the past 3 weeks so my membership is getting it's use. Once school ends in about 2 weeks I'll have to figure out what to do before they wake or after they go to bed since they have no daycare.

The kids will be getting out of school in a few weeks. While the oldest will be out for the summer the youngest is only out for 3 weeks. Then she starts at her new school!!! It's very exciting and we are all very hopeful that we will see lot's of good improvement from the little one. I came to the realization a few weeks ago that Avery is basically a mischievous unrestrained toddler in the body of a very physically capable almost 5 year old. She climbs things. She get's into messes. She's very impulsive.

One of the reasons why I went silent is that we were trying to get Avery's sleep issues under control again. Back in the winter of 2011/2012 she had major sleep issues and it took us months to get her back into good sleep habits.  This time was worse as that I alluded just above that she's very mischievous and insanely strong for a 5 yr old. We finally resorted to small doses of melatonin to help her go to sleep. I was hesitant to start melatonin because I've read stories where that it could increase waking at night. Which she already does on a regular basis. Since starting the melatonin there has been an increase in night wakings, but it is also high allergy season for her and she's having a break through when it comes to potty training. The melatonin has worked in the sense that what used to be nightly fighting and taking almost 2 hours to go to bed is now about less than 30 minuets from receiving the melatonin to her hitting the sack!!  If you think a 2 year old who takes off a diaper after it's soiled is a lot of fun, try a freaking 5 year old! This whole I am too wet for a diaper and I'm going to whip it off ASAP is new and messy but it's also a sign that she's finally sensing that a wet diaper is a horrible thing to have!!

I am also suppose to be signing up for school...but I'm terrified. Not so much of going back to school but of the debt. I could convince myself that it won't be bad but then if I see the numbers of what I can get for next year I'm not that freaked out. It's all the other stuff after that. I'm considered a senior who still has to take like 54 credits to graduate!! ARGHHHHHHH!!! That's a lot!!!


Is it going to be worth paying student loans before I hit retirement age? (not like I'm going to be able to retire hahano)

Little one school update

Almost 2 months ago we had Avery's annual IEP meeting at her school. Back then I said that they basically wanted to place her like now into a full day program. The first school we saw was not the right environment for her at all. The district then sent us 3 other schools to visit. Two of them were private schools. One was a public coop full day program that could start at the age of 3. hmm shocker as we were told 2 years ago that there was no such options available at the time. I'll get back to that in a minute.

I started to book my appointments to visit the 3 options the district presented us. My husband couldn't attend with me because of work at first but came back with me this past Monday to make the decision.

School 1
This school is about 40 minutes from our house. All 3 of them were that far from our house so she'll be on the bus for awhile to and from school. This school is a private school and is one of the best in our area that has a specific Autism program starting at age 5.  Some of the things she'll be able to do there: weekly pool therapy in house, weekly outings to the community, music therapy, art, recess 2x a day. They have huge sensory/quiet rooms. They actually have rooms for OT that consist of a ball pit, trampolines, swings.  It's a Christian based school but as a Catholic I'm used to seeing crosses and all that stuff all over the place but there was none of that but just a few Bible verses and some Jesus paintings. It's very minimal. The school itself has a low turn around for teachers/aides/therapists which is a good thing. The actual campus feels like a real school as well.

Pool, classroom, touchscreen board in all rooms.

Hallway that has textured walls, and the lighting was so different.

Sensory room

School 2
This was the public coop (5 school districts) option. I was hesitant to go to this one because nobody I knew had heard of this public school option. But basically it's the best kept secret for Autism families in the south suburbs of Chicago. I'm not joking on this. I was pissed after I left this school. Let me tell you why.

In May 2011 we had Avery's original IEP meeting. I knew then that she needed to be in a full day program geared for Autistic kids. I even visited an Autism school just down the road from school 2 (this school is not an option now imo).  I even told the school district in our meeting, "What happens when this doesn't work out?" They then got defensive and said, "You haven't even given us a chance yet." (and if you are asking if they really said this, YES, I documented that whole meeting) This was when we were told that there aren't any full day preschool options for kids with Autism in our area. It was then decided to have more frequent meetings in regards to progress. I believed what they told me.

The program offered at school 2 is basically the same program offered from school 1 but for preschool kids!! It was everything I would have wanted for her 2 years ago and considering all the difficulties she had at the beginning of the year she could have been in from the start of this year. The kicker part of all of this is that the current administrator for this program at school 2 used to run a similar program at her current school. When 2 communities pulled out of our current coop they decided to END the Autism program. END IT. This is when she moved to this coop. IF I had known about this program at school 2 I would have NEVER have signed Avery's original IEP plan. I would have fought tooth and nail to have her start at school 2.  I left that school crying, pissed and aggravated because I kept wondering "how far would she be today if only..."  I have since informed all of my friends and advocate friends about this option for kids in our area. I also have informed the school district on how this should have been an option for her from the very beginning.

School 3
This was another private placement school about 35 minutes from our house.  It is a newer school and has a lot of help for parents and parental involvement. It also has rave reviews from people have sent their kids there. It doesn't take kids until age 5 as well.  It is housed in an office park. This is not uncommon. Many of the private placement schools instead of wasting money on building a building utilize their funds for other stuff like equipment or aides. So the whole feeling of the building was a bit different from the minute we walked in. * I first visited this school the morning I was heading to my cousins funeral with my father. So he actually got to see Autism in a whole new different light.
Because the building is an office building the set up was different than school 1. The classrooms were large and on the right of the hallway, therapy and sensory rooms were on the left (visualize conference rooms).

Those little alcoves on the right are to view into the rooms. Squeeze box on right.

The above picture is just to show the difference from school 1 on the left. The right photo is the squeeze machine invented by Temple Grandin. They have this at school 1 as well but this was a better picture of it up close. I couldn't really take many photos at school 2 due to not being able to take pics if kids were in the frame and the kids were everywhere.

School 3 did basically everything school 1 did. A few things were different like their was no weekly pool therapy on site. School 3 did have animals for that type of environment vs school 1 did not.  The playground area in both schools was fenced in of course. School 3 did not provide lunches where school 1 could and can comply with a GF/CF diet if needed and do food therapy.  I witnessed them restraining children with CPI at both schools. It's not something you want them to have to do to your child but if they are a danger to themselves or others it has to be done. Each school was the same distance basically from home and from her therapy place.

So where did we end up?

On Monday my husband and I went back to visit Schools 1 & 3.  If Avery had started at school 2 we probably wouldn't have even looked at schools 1 & 3. We basically redid the tours that I had done and he got to ask questions himself. On the tour of school 1 the director was talking about God and going on and on a bit and I'm like holy crud. (My husband not a believer, blah blah blah) and I thought for sure it was a no go.  Then we went to see school 3. As we walked out of the second school I asked him what he thought. He then said, "school 1" Which was my gut feeling from the beginning.  He said as well as I did that school 1 felt like a real school and it felt inviting and that we would be comfortable with her there.  Also her current speech therapist used to work at this school before she left to open her own therapy clinic. That was part of the equation as well.

With having these great options available to her it was hard to make a decision. It also ended up being frustrating esp after visiting school 2. Now the district has set up an in house observation for the new school to come see her. And I'm counting down the days til she goes to a new school.  

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.