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.

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!

I should write a post..

***Please excuse the spacing through out. I don't know what happened and I can't fix it!***

I think that a lot.

Then I feel that what I say doesn't really matter to the majority of people.

Then I feel that I don't want to deal with someone who thinks I hate my child because I hate what Autism does to her.

Then I feel like I don't want to deal with the division in the community.

It's there.

Sometimes it is loud and clear.

Sometimes it's the quiet little words that people sneak in that set you back and make you hesitant to post.

But it is my blog.

My words.

My feelings.

I shouldn't be afraid to post what I want but at times I am.

So I want to tell you that for the second year in a row I went to the AutismOne Conference  held in a town not far from where I live. I went last year: 2011. I know that Jenny McCarthy is a dividing force in the community. I can see why. But there is much more at the conference than what people think ie: biomedical, supplements etc.

These are the titles of talks I went to:

Applied Behavioral Analysis for Individuals with Autism and Developmental Disabilities 

If your child is newly diagnosed or you are unsure of therapies this might be something to go to. This was actually with a really boring speaker, imo.  I have seen James Ball talk last year with Temple Grandin and he was so engaging he made ABA therapy sound interesting (which it really isn't at times!)

Know Your Special Ed Rights: IDEA Overview & Preparing for Advocacy 

I went to this last year and spent the whole day listening to it. I went back this year to Thank them. Lynne Arnold actually said she remembered me from last year's conference. I used some of the idea's to get a daily report from my daughters school. They were very happy to hear that she has made progress. This to me last year and still this year is one of the most important things a parent with a special needs child needs to attend. It is an all day talk. But what you learn in those 8 hours is so damn helpful. 

How to Set Limits Without Losing Your Mind: Behavior Strategies That Make Life Easier

This was interesting in the aspect that it was a gentle reminder not to be so hard on yourself and how to learn to deal with your child's actions.

Anatomy of an Autism Claim 101

I bet you think that's for like vaccine claims right? Wrong. That's what I thought it was to. The description in the booklet was just that short. Unless you looked up the title you would not have known it was about insurance claims. When I was walking through the conference hallways I saw the lawyer and the insurance advocate at a booth and on their sign and pamphlet it talks about INSURANCE claims. 

Holy hell every damn parent with a kid with special needs that I know of has damn problems with their insurance. If you go to this next year and you see this talk make sure you bring a copy of your insurance policy and denied claims. They will help lead you in the right direction. Our insurance flat out will not pay any claim that is related to the Autism Spectrum Disorder because they are a self funded policy.  But what if you went there with tons of claims that went unpaid and they lead you in the right direction and suddenly you had thousands of dollars of claims taken care of? Wouldn't that be wonderful?

This was just for second day of the conference on Thursday. I only attended 2 days (Thurs & Friday) and it was held 5 days. 

On Friday I attended these talks:

Natural Approaches to the Dysregulated Nervous System: Healing Sleep, Stress and Seizures

This was interesting. My little one has sleep and stress issues but no seizures. It mainly was focused on the seizures aspect but talked about how all three are intertwined together.  

Shining the Light on Sequential Homeopathy: Essential Tools for Recovery and True Healing 

Basically it was homeopathic therapy. Nothing wrong with trying a homeopathic approach to helping our children. I actually take a natural herb to help with my anxiety. Since being on a natural herb my anxiety has been greatly curbed and I'm not angry and mean like I was on a the pharmaceutical drug my DR prescribed for me. So this was a very interesting talk to sit through.


Food with Benefits

I caught the tail end of this talk. This was interesting in the aspect of trying to eat healthy or if you have a child with gut issues. We actually think our little one has some underlying gut issues but we are unsure about putting her through the testing but most likely will one day. 

Estate Planning for Special Needs Children – What Parents Need to Know

One of my best friends and I attended this together. We were told when we got little one's diagnosis that we should primarily put together a special needs trust for her. Which after 2 years we still haven't done. What this talk did was emphasis how important it is to have one done and how important it is to have a letter of intent written.   

All WE Can Handle. WE'RE No Mother Teresa!

This was with Kim Stagliano author of All I Can Handle: I'm No Mother Theresa. It was the last talk I actually saw during my two days at the conference this year and it was by far the most heart felt, funny and serious one I heard. Not only did she joke about the fact that her 3 daughters were entering puberty at the same time (all got their periods for the first time while she was away) but she also shared with us the story of abuse her nonverbal daughter had experienced at the hand of the aide on her bus. My little one is nonverbal so this really hit home with me. Her book is next on my reading list. 

 

When I first signed up for the conference for a whopping cost of only $25 I had put in to try to get into the spa night held on that Friday night and it was free. I don't get to do that kinda of stuff. I found out in early April that I got into it. So I was able to get a mini facial and massage, paraffin waxing for my hands, and eye brow threading (basically getting your brows done). All this happened while being served free wine (HELLO) in a dimly lit room with other care takers trying to relax for the evening. It was really, really great. I left with a nice goodie bag as well.  

 

I mentioned the cost of the event at only $25 because that is important to me. I can't afford to pay $130 to see 3 speakers in 1 day. That was the cost of the Temple Grandin & James Ball talk I attended last year. The only way I was able to attend that was because of a very special person who graciously donated the cost for me to go.  So many people are trapped by financial constraints that they feel lost when all they want to do is help their kid(s). I know I do on a day to day basis.

It was a lot to take in in two days. Many people attend the whole 5 days. I met Mom's from Norway, Canada, California, Iowa, New Jersey and my own back yard of Illinois. 

I can't blame people who are looking for something that might help them when the majority of them have been told "don't, there's nothing you can do for your child". I know I sure as hell wouldn't like that answer from a Doctor if I asked "how can I help my child?" That is not an acceptable answer to me. And it shouldn't be for a Doctor either.  

Did she really just say that?

I had just picked up the little one from her new speech therapy place. She LOVES the place, her new therapist. It's been wonderful. In the five minutes I took to go from my car, get Avery, get back in the car I missed a call from the school nurse at my older daughters school. School lets out in 40 minutes so I couldn't imagine they were calling me to pick her up.

When I got the nurse on the phone she started to ask me if I knew about my daughters .... dandruff.
Yes.
Oh ok you checked and she doesn't have lice just dandruff.
Oh ok so it's all good? Yes ok.
She has a special shampoo that we use.
No I don't do it every night.
She HATES to have her hair combed/brushed.
It's a hard thing to deal with.
Her hair is long and thick. We've made two donations of her hair already and she's not even 6 yet. 
Oh she let you pick through her hair?
Oh ok.
Yeah because you are a nurse and she get's that nurses and doctors do that stuff.
She does have a sensory issue with her hair.
NO she doesn't have a full blown sensory processing disorder.
Everyone has some type of sensory issue and that doesn't mean they are going to be diagnosed with the disorder. 
NO she doesn't have Autism.
Her little sister has Autism.
Really? There are different types of things that fall under the Autism spectrum? 
Why YES I do know about the different kinds of Autism.
No she just hates having her hair combed/brushed.
I pick my battles and this is not one of them.
Yes she get's OT at school.
Again she does not have Autism her little sister does.
Again she does not have sensory processing integration her little sister does.
This is not one of the things that is a make or break daily routine.
NO she doesn't have Autism or SPD she just hates to have her hair combed/brushed.
I am a pick my battles type of parent.
Ok thanks we'll work on it.

My look yesterday as well with more of a pissed off expression to add to it.

And when I went to go pick up my daughter the teacher didn't say a damn thing to me.  Not a "she really can't sit still, it's itchy, distracting to her and the other kids." NOPE. Not a damn thing. There was no nurse there either. I've seen the nurse in action with other parents so the phone call didn't really surprise me but if she had tried to educate me about Autism and SPD (Sensory Processing Disorder) in front of other parents I probably would have lost my shit.

Now I understand dandruff is gross. The scene with Ally Sheedy in The Breakfast Club usually makes me want to hurl but it's not that bad. But we are working on it. When she was a little baby she had cradle cap ie. dandruff and on a baby that's much easier to take care of than 5.5 year old who will scream bloody murder when you are trying to comb out their hair. If she was a boy her head would be shaved but that is not an option here yet.

If I thought cutting her hair short would help with the "I don't want you to comb my hair freakouts" than I would do it but we've gone down that path before and it didn't change anything.

Who knows maybe I'll get a bug up my butt this weekend and take her for a cut but I doubt she would want her hair cut now. grrr.

It didn't suck and that was awesome

Life has been pretty crazy the past week. After what was suppose to be a quick faucet replacement turned into a mini renovation. By the weekend we finally had a working shower and flushing toilet. Ugh. I don't want to go through that again. It pretty much sucked any and all available funds and some not so available to take care of this problem. Ugh. Which has led me to have the worst attitude ever. It's just not a great situation especially with Christmas this week.

With it being Christmas we have a few things to get out of the way before the big day. The oldest this morning had her holiday school program. She had to learn the song  32 feet and Eight little tails by Gene Autry. Thank goodness it was on ITunes or she would have not learned it. "Mommy I have to hear the music to sing it" she would say.  Our paperwork said the program started at 9:30am and unlike most of the parents we were early. The thing about school productions is it brings out people you had no idea lived in your neighborhood. I also now know the woman next to me lost a bunch of weight because they took out a 30lb mass from her abdomen. People left and right were asking her about it and I was just amazed by all of this. 


All the kids were so well behaved (better than the adults!) and put on a great show.

They sang it all very well and though she doesn't look like she's singing she was opening her mouth at least. LoL. My husband was able to take off this morning to see it but with the bathroom b.s. last week he had to go back into work so the afternoon shenanigans were up to me by myself.


The next thing on our list was to go see Santa and it was up to me to take them on my own.


The last couple of years we have gone to see Santa at the local Bass Pro Shop. Santa's free and he's got the real beard and all that jazz. I was worried as we were heading out that way that it would be crowded since it seemed that people were everywhere. When I pulled into the parking lot I saw a bunch of school buses. Seriously? The reason I was getting worried is that with Avery it's just hard for her to wait, and to take turns. Paige can be helpful at times but I didn't tell her we were seeing Santa just going for a surprise. She realized it was Santa when we pulled into the parking lot. Then her excitement went into over drive and I had no idea if she still had her listening ears on.


As we walked through the parking lot I saw who the school buses belonged to. It was like it was a sign. The buses belonged to a local Christian special needs school. They range from elementary to high school children. They also have a specialized Autism program. I knew when I saw that that maybe I picked the right time to come to see Santa and God was giving me a break today. 


And by the grace of God the Santa area was practically empty. No line. We walked right up and waited for a screaming/terrified baby and laughing parents (it seriously was one of those funny moments!) to be done and we took our turn.

Waiting patiently!

The Smurfs had to come along to see Santa too.

Excitement in overdrive.

Personally I love these. They turned out awesome. The girls were so well behaved. Avery is looking at the camera in almost all of the pictures I took.


No meltdowns, no waiting in line, everybody was awesome.  This was certainly a highlight to my holiday so far!

Supplemental insurance policy for your child with Autism?

I had a phone conversation today with an intake/insurance specialist about setting Avery up with a speech therapist starting in January for when our insurance starts over. See way back in July we learned that we maxed out of Avery's insurance for therapy. She is only allowed 60 1- hour sessions. My husbands company does not have to abide by the Illinois Autism Insurance Mandate because they are a self funded policy. See this post for when we found out: bad news.

So the clinic I talked to today asked me if we had ever thought of getting a supplemental insurance policy for Avery that would be covered by the state mandate. Um say what? No I never thought of it. Plus no, nobody ever, ever mentioned it to us that that could be or should be a possibility.

The guy on the phone basically said well if you end up paying a larger amount of money for out of pocket expenses it could be worth it to  spend the money on a policy so that the mandate picks up the big bulk of it. Make sense? In the long run if you have to have a deductible of a couple thousand it would be worth it to get up to 36K in other benefits.

For Avery we are thinking it would be worth it. We really want her to have more speech therapy than what she is getting at school and more diverse therapies such as to try ABA out for awhile and see what happens. Majority of the time we feel we aren't doing enough for her and if this gives her more of a chance than what's the problem with at least trying right?

So what I am asking you my small amount of readers is, have you gone that route to bypass a crappy work supplied insurance situation? If you have gone this route what has been your experience? Was the out of pocket cost per month worth the therapies you received?

If you have a blog and think this might interest others who might have more experience with insurance and Autism would you please share so I can see what others might say? Thank you! 

One day with a kid with Autism is just One day

You know that saying "you meet one kid with Autism you've just met one kid with Autism". Well life with a kid with Autism can be described like that day to day.

Avery's been sick this week. She missed school Monday and Tuesday. When she got ready to go to school yesterday she was in a good mood, ready to go. She didn't fight getting on the bus (this is a hassle now these days) and I even got a great report from school. When they write that she said "Thank you!" in the right context it makes your heart beam with joy.

So what happens in the 12 hours she's been asleep to change her into a Tasmanian devil? Hell if I know. She was crabby. She didn't want to get out of bed. She was whiny when I put her down at her seat for breakfast. Which when you wake up early to make blueberry muffins that she loves you would expect a happy kid. No not so much with her. Whine. Whine. Whine. Wine oops I mean Whine. She didn't fight getting her coat on, and didn't fight standing at the door to leave. What set her off and this is where I don't have control over it is her sister was refusing to get in the truck to leave for school.  Like literally standing there with arms folded yelling at me. So when I lost it this am and said "get your ass in the truck" (fine parenting skills right there I tell ya!) that's when Avery started to get upset.

When Avery realized she wasn't getting in the truck is when she started to throw herself on the ground in the driveway. Which of course every parent driving their kid to our oldest kids school could witness. All the while the oldest is standing there yelling at me. FML.

I feel bad for the bus driver. She pulled up and saw me chasing Avery in the driveway and throwing her over my shoulder so I could get her on the bus because she was going all "no bones" on me. Since I now help get Avery on the bus the meltdowns are not that bad. So she cooperated on the bus (seriously?) and she was off.

When I got the other one to school she actually stopped to give me a kiss and actually said, "have a good day Mama!" LOL. One day little one, one day!

Avery school pics 2011

Lynn over at Autism Army Mom is hosting a Blog Hop of all those wonderful disastrous professional school pics.

Here is Avery's submission:

We never took her back for her retakes either. The retakes were on a Saturday which is like unheard of in my circle of friends. Her older sisters picture wasn't much better.

Now some may say why critique if you know how hard it is at home to get a good picture? Well I'll tell you why I can critique. I used to do school photography. For a wonderful craptastic 8 months I got to travel through out the Chicago land area and make $80 a DAY. Now on days when I worked about 4 hours it was sweet. But on days where I had to drive 1.5 hours to get to a local high school at 5am to set up for 6am photos with a bunch of asshole teenagers it wasn't worth the money.

I had to do a lot of special education kids pictures during my few months taking pictures. Hard is understatement. But I tried to be patient. The aide's were helping to get the pictures as best as they could. Except for the one time I was at a school and the aide and another adult were muttering under their breath about how much of a little bitch this girl in a wheel chair was being. That pretty much was my breaking point of that craptastic job. I can not take adults calling little kids names like that. Especially those who are suppose to be helping them.

Sigh. Anyways all those days of good/bad days with taking pictures of kids came screeching back when I saw those pictures of Avery. Yes there could be some cropping that could work but it's still upsetting. It's one of those things were I think "fucking great. is this how they are all going to look?" I thought "was someone muttering names under their breath about Avery?" and "why didn't someone get some damn fucking bubbles! she loves bubbles! She would have smiled her little ass off!" I could have had a picture of Avery and a bunch of tiny bubbles hanging in my living room. Now that would have been great!

Halloween 2011

I wholeheartedly thought I was going to start this post out with "Halloween was a big fat fail". I can honestly say I was so very surprised today!

The older one had said she was wanted to be Jessie from Toy Story for the longest time for Halloween. We even went to the store to get a costume a few weeks back and as I looked at the costume I truly felt there was no way I could spend a good $25 on a flimsy ass piece of plastic for her costume. I had already thought of how I wanted to do a cow girl costume for her just in case. So after that trip to the store I decided to fore go the store bought costume for a home made one. I'm so glad I did!!

I hit up a resale shop to look for a plaid shirt ($3) for her. We had extra jeans (free) that were hand me downs from a friend for her pants. I got her a pair of black boots ($16) from Payless she can wear for a long time.  My cowboy hat that we didn't have to spend extra money on. I then used some extra cow fleece (free) that I had from old projects for the chaps for her pants. Here she was today:

A little blurry but cute as hell!

We thought she might freak out because it wasn't a real "Jessie" costume but she was so excited to wear it! She was the only little girl in her class who had a home made costume. Pretty darn proud of myself if I do say so!

Then there was Avery. I couldn't find her a cow costume for the life of me. As long as I can I will want them to be matchy match. Then I debated about making a costume for her. I had thought of doing a flamingo or any other type of bird since she LOVES them so much. Then I thought well it might just be a crap shoot if she even wants to wear a costume. I pulled out one of Paige's old costumes instead and I put it on her and she was great with it. It was a really cute pirate costume she did not like. I added a tutu to her bottom. I also put on one of her regular hats she loves and put the head wrap on that and she kept it on. I wish I could have gotten a really good picture of her in it. All I could get was a pic of her sitting at home waiting for Daddy to go through her loot.

Awesome day!

The first house we always hit up for Halloween is my Dad's of course since he is right across from us. As we were leaving there Avery had a mini meltdown and we thought oh no this is not going to go well today. The next house she was still kinda of confused of what was going on. The third house she was getting it. By the fourth house all I had to do was go up with her and just explain a little bit that she doesn't talk so she can't say "trick or treat" and everyone was very understanding. She held out her hand or her bag and got a boat load of candy. She even held onto a bag of goldfish crackers for the entire time we were out there. We were so proud of her and her big sister who was a gracious little trick and treater today! Great day!

Fall progress meeting update

This morning we had our first progress meeting with little one's current teacher, all of her therapists, social worker, the assisted technology professional and the special ed directors. This meeting was something we had asked for back at her initial evaluation since she is nonverbal and we really can't get an idea of how she is progressing at school.

To sum it all up she basically is a little rock star for everyone at school. Like she amazes them every day with what she does. We even asked at one time if we were all still talking about the same kid because the stuff she does is stuff she doesn't do at home. She also has been accepting of a new schedule they implemented at school in the past week. She went from periods of instruction that were 15 mins long to new periods of 4 min tasks and then 4 min breaks. She seemed to have accepted the "first, then" routine very well. They also said she has made leaps and bounds improvement from how she was in the summer school program, then to the beginning of the regular school year until now. Lot's of eye contact from her. Lot's more easier transitioning. She does still have her not so great days but they've said it's a big difference from the before. 

So all pretty amazing right? It was sounding pretty good. We got to a main sticking point that has been irritating us and that was the issue of having a communication device for her. We even brought paperwork for simpler. For the last few months it's been sounding like they didn't want to give her one until she was able to show them that she could point at things for choosing. While we understood that we also knew that what ever you gave her she could learn very fast. She has an IPad that she has picked up very quickly. What happened when we got to this meeting today? The assisted technology personnel said "research indicates that there should be no qualifications required for the use of assisted technology." Ok. So now it was basically well what do you (her parents) want to do? Um get her something to start trying. I almost felt like they wasted her time for the last couple of months and needlessly pushed off our requests for starting the trial and error process of what will work best with her.

I also brought up whether or not she should have an ABA therapy plan implemented. They basically feel that what they are doing with her is working. The social worker went on a long tangent about how ABA is very time consuming and leaves the child isolated from other kids and they don't get the socialization that they need. They do have a consultant from another institution who came to the school to observe and give some tips at the beginning of the year because the school felt they needed to have someone look at their Autism program and give them some ideas. The consultant will be back next week and the team will revisit it when she is back.

The social worker at the end said she has the numbers for a few ABA therapists she could give us. I said that would be great BUT we have already maxed out of our insurance in July so it wasn't something viable for us now.  Considering we will have to figure out a program for her next year to maximize her needs and the available therapy she will have it's going to be a game of what will be the priority. Insurance blows.

All in all it was a good meeting. I just wished I could see her doing all these wonderful things for her teacher and therapists. Seeing is believing right? Sigh. Hopefully soon she'll be doing these things at home.

A Day of Hope

On Friday September 30 I spent the day at the Chicago Autism and Asperbergers Syndrome Conference where the featured speakers were  Dr. Temple Grandin and Dr. Jim Ball.  Temple's mother Eustacia Cutler was to speak as well but could not due to bad weather on the east coast. So instead of speaking for 1.5 hours Temple spoke for 3 hours and answered questions from the crowd. You may not know who Temple Grandin is but she is the subject of the wonderful HBO film named after her. I watched the film earlier this year and it truly is a window into the workings of a child with Autism. She is probably the most positive, influential, successful person with high functioning Autism that is out there.

Before the conference started she was signing her book and I got to talk to her for a brief moment.

For some reason I felt like BAWLING when I started to talk to her. I could feel myself getting choked up. I told myself "keep it together" for just a minute.  I thought to myself  crud I should have bought a whole bunch of tissue with me today as well.  She is an absolute firm believer that children as young as Avery need the most intervention and the most therapy and one:one attention. Whether or not the parent can do it she advises to implore members of your community to help out and spend time with your child. That the minimum of 20 hours a week needs to happen besides what she is getting at school.

Those were her words to me that Avery is not getting enough and if we don't get her more help we might end up loosing that window of opportunity. That probably deflated my balloon of joy that morning. That feeling that once again I feel like I am not doing enough for her crept back up on me.  I don't know how other parents feel after they leave these type of conferences but after the Autism One conference in May and this conference I felt like I wasn't doing enough but that feeling this time was also joined by the feeling of hope as I left that day.

It wasn't just listening to Temple speak of her experiences and how she processes information. She is very persistent until she get's the answer she is looking for. If you have seen the HBO film then you know the way she talks and her demeanor is very straight forward. Claire Danes portrayal is spot on. She did a tremendous job of getting into the role. It was just amazing. Part of being there yesterday was another professional in the Autism community who was speaking about early intervention. His name was Dr. Jim Ball.

Dr. Jim Ball wrote the book titled, Early Intervention and Autism: Real-Life Questions, Real-Life Answers. I actually was not gung ho about this part of the conference. I had never heard of him and wasn't familiar with his book.  I thought I would listen to the first part and if it wasn't something I thought was geared towards our situation that I would call my husband to come get me since he was only at work a few miles away. I absolutely and utterly glad that I stayed for his talk.

Dr. Ball is not only an engaging story teller but he tells his stories of the children he has helped with great pride, joy and admiration for the strides these children have made. He talked about all degrees of severity of the spectrum and how they can be helped. If you feel like there is no hope for your child or that you aren't doing enough for them like I was feeling then to me this was a ray of hope. I wish I had a copy of the talk to show my husband and to others or even myself to be able to replay on those days that we are just battling Autism with all we have.

I know Avery has it in her to talk and be able to control herself. I've watched her have the meltdowns and I've watched her calm herself down when my niece sat to close to her at lunch back in the spring. I've watched her completely fight me on something one minute and then a little light bulb goes off in her head and she turns her attitude around and does exactly what I asked her. Sometimes I think we baby her to much and it shows when her big sister says, "Mommy Avery can't do that she's just a baby." Well the baby is over 3 and we need to stop making excuses for her.

I think that's probably the best message I got out of the conference and that is not to treat them like an Autistic kid but a kid who happens to have Autism. Does that make sense? Put the child first and the Autism will become second. Don't say they can't do something because they have Autism. Teach them to do things like being potty trained and having social skills and they will go far in life. I think this sounds easier to me because I don't believe that Avery is that far down on the spectrum as the Doctors had us feeling when she was first diagnosed.

I'm glad I see Avery as Avery and not just my Autistic daughter Avery.