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.

When they are sick is when there is peace well sorta of..

Little one was sick all of last week. So sick in fact at one point we thought she would have to go to the hospital because she was becoming dehydrated from not eating and drinking enough. She had a fever for most of the week with an ear infection. So from Saturday to Thursday she slept and slept.

She was so sad to see like this. On Friday morning she woke up before any of us and she was a boundless amount of energy. Still squawking because her throat was still bothering her but we knew she was going to be ok.

On Saturday it was a beautiful day here. Sunny with a little chill but beautiful for an early not yet Fall day. The majority of the morning she was screeching. Joy. Then at one point she kept pushing me or my husband into the kitchen and all she wanted to do was look out the window so we had to hold her up to do that. Whenever we tried to put her down she cried.

Then we decided to just let her lead us to what she wanted. She led me to the door, she grabbed the handle to turn it. She wanted to be outside. Her wish was my command just to make her happy. She lead me to the back yard. At one point she even pushed me out of the yard and closed the gate on me as if to say "ok I'm where I want to be, I don't need you now".

She grabbed the last two dandelions (amazingly!)  in the yard and proceeded to walk around with them for a hour. She went down the slide a few times but what she wanted to do was just play with the sticks and the rocks. After a week of being cooped up in the house I obliged her and just sat and watched her as she tossed them from one side of a little fence to another. She was happy.

At one point I tried to see if she wanted to go inside and I got some yelling from her so I let her be. My husband came out to stay with her while I went and got her a sippy cup and sandwich for myself. She saw her sippy and grabbed it and went back to playing. After about another half hour I opened the gate and put my hand out and asked if she wanted to go back inside. She with no issue grabbed my hand and walked back in the house. A successful outing for her. After being sick all week and not feeling the wind on her face she got to spend time outdoors and it made her happy.

After she went to bed that night I thought about the day and how we struggle with not knowing what she wants because she can't verbally tell us. I wrote this on my Facebook status because this is how I really felt that night:

Having a nonverbal child is a lot like charades. Except the game really kinda of sucks and you can't see an end in sight.

I think it's the way we look at it right now but it's brutally honest to me.

My husband and I discussed what we could be missing in helping her. I'm sure the list is long right now.  It really is a puzzle because hopefully we'll find the right piece that will help her one day.

Did you grieve?

Did you grieve the diagnosis of Autism? I came across this post the other day and it set off a firestorm of comments on Facebook. Here is the column: Grieving Autism? Not so much

I can honestly say I did grieve the diagnosis and still am. We are approaching the 1 year anniversary of Avery's official diagnosis. I am more hopeful today than I was a year ago but I still feel as lost as I did a year ago.

I had my moment a few months ago about how I wondered how it was to have a normal child. I was walking out the door and my father made the comment about "when is she going to talk?" He didn't understand that all the play therapy was actually helping her. I cried when I took her to therapy because i just thought while driving there "What would it be like to have a normal child?"

I literally had no idea. Our first child had a global developmental delay. So she had therapy 4x a week and then her sister entered the world of therapy and that's where our world turned. My world for the last 3 years has revolved around 1 child or another in therapy. I wasn't prepared while they were in utero if they were going to have special needs. Physically everything looked good. Neurologically it was a different story and only one that could be told later on.

If you have the tests or ultrasounds and it shows a positive and not a false positive for chromosomal abnormalities or a physical abnormality and they tell you ahead of time you start the process of how to process it all much earlier. It also destroys or eats away at the joy of your pregnancy. I had that with Avery. Half way through I was termed "high risk" having high amniotic fluid that was suppose to lead to neurological disorders (never mentioned Autism) or extra digits or less digits. So while the last half of my pregnancy was spent in anxiety of whether or not she would come early or show the dr's wrong (she was indeed early) I also never thought about Autism during that period. I just wanted to make sure she was there. Breathing. Alive.

So once we got through the initial "She's here!" "She's physically all there!" we didn't really think to much about anything else til later when we started to see the changes or not meeting the milestones.

Then you are sitting in a DR's office and she hands you a report. Instead of reading through it all you flat out ask, "Is she on the spectrum?" And the reply is "Yes." Your world stops as you know it. The DR. starts to talk about the report and how she see's your child's future and it's a big blur. Because it's A LOT of information to absorb at one time.  Trusts? Maybe mainstreaming? You don't get a moment to swear, have an out burst, to hit something. You cry a bit and continue on with your appointment.

Then you walk outside and it's a beautiful early fall day. The sun is shining and it's still warm outside. You then feel like you need to do everything NOW.  NOW.  NOW. So you either process what has happened or you put it inside and you don't deal with it until later. For the last year I've been thinking of all of the things we have lost. We physically didn't lose her but we did loose our vision of her future. She still is a happy, cuddle bug who is a big sweet heart. That's never been lost. But what's been lost is deep inside her. We know she knows whats going on around her. We know she has the words. Why they are not coming out of her mouth infuriates me to no end. Why she screams non stop some days I have no idea. Why she hit's her head we know is out of frustration.

All of these things are a part of lives today. If you ask me if I would like a day of the Avery that doesn't have Autism, yes, why yes I would if only you didn't take her away again. You can't barter like that though. That's just not how life is. It is what it is. The word Grieve may not be a wonderful choice of words for someone who has made it through the other side or someone who views Grieving as part of death and never coming back but for someone who views Grieving as losing parts of your life and moving on then well I'll take it for what we've been doing the past year and I won't be made to feel ashamed by doing so.

School year 2011

I should probably post more than once a month, huh? Sometimes I don't think I have anything to say except that we are just keeping on with what we are doing.

The little one started back at school while the big one started Kindergarten. Both are half day classes in the morning. So I get a glorious 2.5 hours kid free. But man does that 2.5 hours fly by!

The school year started off with a little bit of a hitch with the school bus in the am and in the afternoon but after one angry call to the dispatch office things were all good the next morning and has been since then.

On the little one's first day of school.

A few things we have noticed since the start of the school year. The letters sent home daily from the aide during the summer were all doom and gloom. Now with a different aide all it's missing some days is rainbows and glitter all over it. She seems to be doing fantastic on some days. On other days I get little snippets of "was uncooperative" "didn't tolerate the music class with other kids". We really don't know what to make of it. My husband thinks they are playing "oh shit we have to make it look like she has some progress because we have her special IEP meeting in October" and I think well it could be that OR she just has a better grip of being on a schedule and routine and what she wants to do. I would love to know.

She still doesn't have a communication device which is irritating because they decided to wait until they knew she could point to her choices. Well this kiddo is pretty smart. She can figure it out and learn it and if you give it to her she'll show you what she wants. 

Yes, IPad and old IPhone and their peace in the galaxy.

She is still going to OT services at Easter Seals with a different OT. I thought all these changes were going to send her to maximum freak out. Well she hasn't been that bad. We've had the bouts of head hitting out of frustration but it's not on the floor or the wall. When I walked her into therapy and her therapist came out for her she took her hand and started pulling her to the therapy room. That makes me happy.

The big freak out I had over the summer about her previous OT sudden departure and then suddenly having to find a new provider that we could afford seemed to turn out for the best for her right now. This OT also recognized that even though she is happy, goes with the flow at the beginning of therapy that at the 40-45 minute period is when she is just done with you. I recognized that over the summer when just playing outside in the pool. She would be playing for about that amount of time and after that she had to go "find some mischief".  For better words. lol.

So we are keeping on with things. Not seeing a big explosion of words from her but not really sure if that will happen one day. She's got the word Wait down pact now which is a lot better than NO! lol.
Oh and when does the constant screeching end? Seriously. That's a thing she picked up over the summer and it has not stopped. They make wine for that right?

Hiiiiiiiiiiiiii!

That's my mornings with Avery when I walk into her room. I say "Hi!" she says, "Hiiiiiiiii!" lol. We are getting there. We are getting there. Next week she starts school again and she'll have a substitute teacher again until the regular teacher comes back in November from maternity leave. But we'll have our next IEP meeting in October to talk about Avery's progress or lack of progress. Which I think will be hard to figure out without her regular teacher but let's see what happens when school starts.

I wanted to share a video made by a Dad whose daughter has Autism. His blog is Lou's Land.

I think it's a very powerful video. It pretty much mimicked a play by play of the last year of our life and how I feel about our lives now. 

Some people aren't happy with the term "fix".  I don't see it as negative as most people do.

I wrote this on Diary of a Mom's blog about the word fix: 

I think the fact that the word fix is in quotes is to symbolize a hope in the future to find a solution and/or a cure. I honestly don’t think it’s meant as a negative. Plus usually men are known as the one’s in the relationships of life of those who see a problem and want to “fix” it. Whether it’s a broken item around the house or a relationship problem. 

If you ever read Men are from Mar's Women are from Venus that's how the author described men's view of life. How do I fix this problem? 


We all know the struggles our children go through. I can't imagine a day that goes by when I see my daughter hit her head out of frustration that I don't want to "fix" that. I want to "fix" everything for her. I want her to have the best of everything and I want her to be the best she can be. I don't want her to hurt anymore. I want her to smile and laugh more. In order to do that we have to "fix" or "solve" her issues to the best that we can. 

If "Fix" is as negative to some people as the idea of a "magic pill" that will make Autism disappear in their child than I guess I am on that side. Who wouldn't want to take their child's pain away? I know I do.

Byeeee! and Wait! Wait! Wait!

Uh huh. That's right. That's what the little one was telling me as I was leaving the house today!
Cha Ching! Something is paying off!!

I was leaving to go to physical therapy for my foot & hip. I normally just scoot out and don't make a big deal of leaving because I know the little one will freak out. Today I just happened to say bye to her. To my surprise she said "byeeeeee!" I stopped and turned back to her and she was standing at our kitchen gate. She was saying "wait!" "wait!" "wait!" and POINTING at herself. POINTING!

See I am going to guess most Autie Mom's are like me. You almost always bring your sidekick wherever you go. So she was basically like "Um why aren't I going with you today Momma?" I had to say "No, just Momma today" and the baby sitter distracted her and I was able to leave without a huge meltdown. Then when I got home and let the baby sitter out she said, "bye bye!" to her as well.

What an awesome little girl!

Suck it Autism! You will NOT win!

When life hands you lemons you..

suck it up and move on.

A few weeks ago I posted about how we suffered a blow to Avery's therapy team here. She lost her OT she's had from the start, she maxed out of the therapy for our insurance and we lost the extra income that would have been helpful to pay for out of pocket therapy for the rest of the year.

I went to work ASAP and was able to find an interim therapy solution at Easters Seals for the time she had a break from the summer to fall session of school. So far so good. She seems to not have skipped a beat with the therapists much to my surprise. She has attended to activities with the therapist and even told her "all done" when done swinging which is huge. So for an interim band aid it seems to be working.

I want to get her on the waiting list for the therapy place I go to for my physical therapy for my foot. 
While at therapy today I saw the PT who worked with my oldest for about a year while she was in our states Early Intervention program. She also worked with Avery for a short time from 5-9 months ( i think I'm fuzzy about that time period).  She really adored our girls and they were great with her.

When I talked to her today she was really shocked to know that Avery has Autism. She kept saying, "but she gave me good eye contact", "she wasn't withdrawn", etc. I mean I am not sure how much she could have been clued into with her at that age because she really didn't start to show major signs until she was about 2 and the sensory issues didn't explode until she was in therapy. I mean there were small things to start with but nothing big during the first year. It's all the developmental milestone's in the second year that she didn't hit.

I saw a few issues the first year but did anyone see the big issues the first year?

Like when I told the DR who delivered her that she has Autism I kinda of felt bad telling her about Avery's situation. It's not like she did it to her or she could have noticed anything to cut it off at the pass. I mean it is what it is. She has Autism. In the grand scheme of things she's lucky. No physical health issues, she's not in a wheelchair, she doesn't have seizures. When she starts school again in a few weeks she'll be getting more services, more attention and God willing things will blossom for her.

I'm trying to keep things in perspective these days. No matter how I think our life sucks, I'm pretty sure someone else has it worse off and is envious or wistful of the life we have. I don't mean that in a cocky way either. When I have a moment and I talk to my BF and we are both having a bad day, and we both go "I wonder what it would be like to have "normal" kids" you know a life that does not revolve around a therapy schedule we remind ourselves of these things.  I'm just counting my blessings. Which is something I sometimes forget to do and need to do more of.

Do you tell strangers your child has Autism?

Like out of no reason than to explain their behavior?

I was out running errands with Avery this morning. Our first major stop was Walmart. She was doing pretty good today. She was being very vocal but happy. The cashier I had was pretty fast today (shocker). She was saying she had all the babies in her lane today and then corrected herself when she said Avery wasn't a baby. I said no not really but she doesn't really talk so it's like having a baby. She then was telling me about her 2 year old who was to receive speech therapy through our states Early Intervention program. I mentioned Avery had Autism and she said she thought her daughter had some mannerisms that alarmed her. She told me she was waiting for a speech therapist.

This is where I turned off just being a Mom of a kid with a Autism into the Mom who knows how to work the system. I then rattled off as fast as I could because of course a line was forming what she needs to do with our EI system. I told her she had to be on her case worker's ass like she owe's you money. No joke. Next tell her you want the diagnostic medical evaluation done. Just to get the ball rolling for that because there is a waiting list for these things. That she can get it scheduled for 6 months after she starts receiving services but it has to be done 90 days before their 3rd birthday when they age out. I gave her the name of the group we took Avery to for her evaluation. I wished her the best of luck and we then left the store.

Two more stores and by the last one Avery was at her limit and it was time for lunch. She did well for herself and was a happy camper when we got home and ate lunch.

I told my husband about my experience at Walmart this morning and I mentioned I should just get cards made up with the basic information for a family starting EI or starting their therapy journey. It would have to be an 8x10 card because of all the information you need to know though.

My experience this morning reminded me of two Mom's I met at the Autism One Conference in May. The first Mom was the mother who was of Asian descent who had a hard time expressing herself and didn't know where to get help for her child. The second Mom this reminded me of was of another mother who's son had Autism and she said that she's always telling people at her kids school that he has Autism. She said she didn't want to feel alone and needed to know who was like her.

I think I want to help Mom's like the first one I described because if you don't know where to start it's a hard road and it's only better if you can get help from others. I feel like the second Mother because I'm not afraid to tell people my child has Autism. There are more and more kids with Autism today than when I was growing up and someone almost always knows a family with a kid on the spectrum but sometimes you meet that Mom who's not sure if her child does or does not and needs the help in finding out.

There is nothing wrong with saying to others my child has Autism. You never know if the next person you tell will be someone who needs help or just a push in the right direction in getting help not just for their child but even for themselves.

I should probably post more than every 2 weeks..

Or ten days or so...

Sorta of an update. We had Avery set up with Easter Seals for OT for the break between the summer session of school and the fall start of the year. Her first appointment was canceled due to a sick OT so her next appointment won't be til next week which coincides on her last day of school for the summer session. If they cancel again then I might throw in the towel with Easter Seals. I just don't like to plan for something and rearrange the schedule for someone else who will be a short term solution for her.

The last day of school this week I got a great report from Avery's aide at school. It took her only 4 weeks to get into a groove and have a good day. Her aide wrote on the bottom that she won't be at school for the last two days (awesome) so I might not get a report home (awesome). So let's look that it took her 4 weeks to have 1 good day and then she's off for another 4 weeks before she starts in the fall. AWESOME.  The little kid finally had a good day and then let's stop her schedule for a few weeks and hope she comes back roaring to go. Should be great.

She finally has stopped the constant head hitting. She seems to be making a turn around. I would hate to see it go to hell in the next few weeks with all the changes.

This morning I watched her make a concentrated effort to actually listen to my directions because she knows certain house rules. In our house we do not allow toys or blankies in the kitchen or the table. It has worked very well for us in our house with our oldest and we have worked hard with Avery for her to get it. The table is for eating not for playing with your toys. So the kids know at the door threshold they are to leave their toys or blankie there. With our oldest she knows she leaves her "puppy" at the door. With Avery she knows she has to leave her blankie and her flamingo at the door. If you tell her to "drop them" she might fight you for a few seconds but she normally drops them.

In the last few days she has found a new love. A beach towel. It's a new texture for her to cuddle up with and she even sleeps with it. So this morning she was clutching it while I was getting her dressed for the day. She fussed as I tried to take it away from her after getting dressed. We have a simple routine. Get dressed and breakfast is next. Simple. So she knows the deal. As we walked to our kitchen I told her to drop them and she started fussing with me. I walked into the kitchen and stood at the sink. I turned to her and said "No leave the blankie at the door". She was standing there turning around, holding onto the "blankie". I told her "let's go and eat breakfast" and she turned around and dropped the towel! She knows. She knows what her responsibilities are even though she doesn't verbally say she knows.

I've heard her singing songs from movies this week as well. Ask her a question and the best answer that you'll get is "NO" but that's for everything. She'll react to movies and go, "Oh no!!" It's so quiet that you might only hear her if she is sitting with you. Expect her to say something when she gives you eye contact it won't exactly work. But what I need to teach her is to give her Daddy kisses. I finally got her to do it for me with puckering up for her all day long whenever she is in my face. Maybe I should leave him alone with the little one all day while the older one and I go to the movies or something so he can make silly faces all day with her?

The wonderful world of Autism and Insurance

Let me start out with a back history.  A few weeks ago our daughters OT (occupational therapist) told us that she was leaving and moving out of state. Well that would have been nice to know a few weeks earlier when we were setting our plans for the summer. When I got the news then I was upset. And it wasn't because of the "oh fudge we have to find a new therapist" to me it was like our little girl was going to be loosing her best friend and she didn't even know it. She LOVED her therapist. LOVED. She knew exactly how her time was going to be when she was with her. She always lit up when she saw her and was always on her best behavior for her. She was the only OT she has had from the start until she started school.

Last week we had our appointment with her and it was suppose to be one of those to start transitioning to a new therapist time slot. As we left she said to us "see you next week!" Ok have a great weekend!

On Tuesday I got a call from the clinic telling me that our OT had to leave sooner than she thought and she quit. WTFFF <--- that means What The Fucking Freaking Fuck. Sorry for the words but that's exactly how I felt. As the chic on the other side of the phone is trying to discuss with me getting another therapist in there sooner I am bawling on the phone. Bawling. FUCK. Poor Avery. OMG How is she going to react to this? No goodbye's nothing! WTF. The poor kid. I don't know what happened in our OT's life that this had to be so sudden and she was wonderful for the whole time we had dealt with her so I can't be pissed at her for the sudden departure ( I mean I can be but I just can't)  I am just very disappointed that Avery will never get that closure (even though she wouldn't know what was really going on) but this will be one of the first time's someone she adores just leaves with no explanation.

The backlash to loosing her therapist is that kids like her deal with changes not during the change but sometimes process it later and react to it later. So we finally had a weekend with not a lot of head hitting and physical outbursts and now I can expect a whole lot more of this with this change.

Then today was the cherry on the sundae of the WTFFF. 

I had just finished with my physical therapy at the rehab center for my foot problem. I got a call from the school to pick her up because she wasn't feeling well and some green gunk coming out of her eyes and nose. Awesome. So I managed to get her into the pediatrician right away and get her checked out while the babysitter was with my oldest.

When I was gone the clinic called and asked that I call them back. Ok I call back and before we can schedule with the new therapist I had to talk to the benefits coordinator because they realized or found out that we had maxed out our 60 therapy sessions for the year. omfg. Our insurance policy through my husbands work renewed in May so I thought hmm that's odd let's call the insurance company. When I talked to the customer service representative (first one I ever dealt with that was nice and sympathetic) she told me that our insurance is based on a calendar year January -December. So that whole May deal of renewing the plan was just to make sure everything was the same. wtfff. THEN the best part of this is when I asked about the Illinois Autism Insurance Coverage Law. I found out that my husbands company is a self funded insurance plan. Who guess what opted out of the Autism coverage on their policies. WTFFF. So we are now at the point where we have to pay out of pocket if we want to have outside OT services. To the tune of $500 a month. Because the clinic who apparently thinks everyone can just dole out $120 a week by guilt for their child does not believe in a sliding scale. By the end of the year it would cost us $3,000 out of pocket if we were to keep her at the clinic. Anybody else crying with me yet?

Obviously this was a big blow to us today. Disappointed with the company he works with. Disappointed with the clinic and their strictness. Just a big ol wtfff. Because this would not have been that big of an issue 2 months ago. We would have had the extra money. Since then, well since Thursday of last week we don't have my husbands second job to get the extra income. It was killing him and it became impossible for him to juggle the two jobs. So we made the decision for him to quit finally after 5.5 years. Sigh. Then this.

While I sat today and tried to figure out what to do, and if you are ever in this position just an FYI nobody knows how to help you when you ask. So start looking yourself! I was able to get her into a short term therapy program through our local Easter Seals for the break between the summer session of school and the fall. During this time I will be looking into a long term solution. There is a regular 1 year waiting list for OT services through Easter Seals. Why Easter Seals? Because they have a private pay plan that is half of what the clinic would charge. They are in town and it's short term and will get her a chance to get on the waiting list if we decide that we really like it there.

So I am not going to end this post on a negative note because while I can only dwell on the insurance crap we are dealing with now I need to focus on a positive or I will go nuts.

Avery got on the bus yesterday to go to school and as she got in her car seat and I waved good bye to her she waved back!! It has never happened before and when I started clapping I was so happy that she did that she started clapping back! Yay! Go Avery!!!

So there you have it. Insurance + Autism = Suck Ass and Avery is waving bye bye! Good and the bad. Once again I hate Autism.

Nobody wins with a head but

Does anybody else's little one wake up in the middle of the night and fart around for awhile and fall asleep? I usually don't hear Avery when she does this. She is still in a crib for safety reasons.  Last night I just happened to be headed to the washroom and I heard her. Then at 4am I heard the screaming crying. I knew the sound, it meant that her blankie was not in her bed. So I go into her room put it back it, give her some tight squeezes and try to get out of her room without a freak out. Did not work.


So by 9:30 am this morning she was a wild child crazy little thing. I was trying to get her to sit in the hug chair with me and she head butted me. That was it. I said you are going to take a nap whether you want to or not. I put her in her crib and two minutes later she was OUT. Like 4 hour long nap OUT.

If we didn't start making noises I bet she would have slept longer if we let her. She woke up very smiley and happy.  The rest of the day was pretty good. After a big lunch and lot's of milk she was calm enough to actually hang out with me on the couch.

Now the only issue is trying to get her to sleep now... I still hear her farting around in her crib and I'm ready for bed.

Now it's not the first time I've been head butted but normally with that I can get up and get out of the house and run but today I couldn't because my foot is currently in a boot in case I have a stress fracture. But whenever I get head butted I always say the line from Paul Blart: Mall Cop, "Nobody wins with a head but" it's very fitting for days like today.

Our week in review...

I'm sorry if I don't post daily here but I'm trying to find my balance between this and my running blog and life in general.

So let me kinda of give you a run down of Avery's days at school and the bad news we got this afternoon.

All of last weekend Avery was a very unhappy camper. Lot's of head hitting and inability to calm her. I did lot's of hugging and holding last weekend.

 If I left the room she was screaming and hitting her head against the wall. Sigh. Long weekend.

We know this reaction is due to the changes she's going through the past few weeks. I do have to say she doesn't have a problem getting on the school bus or anything. I think what has helped her is watching her big sister get on the bus for the last 2 years. She knows she comes back so it's safe.

Her days at school this week kinda like this:

Upon arrival every day they put the weighted vest on her.
Table time - Tough transitioning to the table, traced name h.o.h. (hand over hand) sat at table for 15 minutes and played with fidget toys.
Circle - Tough time transitioning to circle and would not sit. Head hitting. Break w/water bucket and toys.
Group 1 - Tough time transitioning from water toys (duh she LOVES water) Head hitting. Sat at table about 10 minutes and played with beans and toys. Walked around the last few minutes.
Group 2 - Did table activity hand over hand for about 5 minutes. Water break with water bucket and toys.
Group 3 - Tough transition to table, sat and did shaving cream for about 10 minutes (she LOVES shaving cream)  Walked around with butterfly toy rest of time.
Recess - Went out to park with class played on slide and walked around with leaves in hand. Tough transition inside. (One time this week she was so bad they had to have recess inside because of the head hitting)
Snack - Sat and ate snack at table with the class. Sat in cube chair. (ok so which one was more effective and why was she moved to the cube chair?) Walked around room with toys.
Story - Vest was put on before story time. Sat on carpet with class. Did not attend to book. Sat with beans and strung beads for 15 minutes.
Group work - Sat at table for 10 minutes and did something hand over hand (really couldn't read this part of the notes)
Music - Danced to music (she LOVES music) at carpet with other kids.

This was basically what the whole week looked like. It was frustrating but not surprising. At one point the speech therapist sent a note home about PECS communication boards. We had asked about an electronic communication device instead, pretty sure our insurance will pick up the cost and the district will cover the rest. Instead I got a note home saying that Avery has to show them that she knows how to point so at the earliest she won't get one til the fall. Awesome.

One day this week her little butt woke up early at 5 and I thought good luck with that at school today.
By the dinner time she was done for the day. After dinner she crawled up on my lap. She did the following really quickly after that....

She grabbed her blankie and her flamingo and fell right asleep on my leg. So adorable. Moment's like this make up for the head hitting and screaming when I leave the room. Well sometimes.

The weekend ended on a rather sour note though. After Avery's occupational therapy session her therapist told me that she was quitting. Fudge. I asked if she was going to another clinic. No she's moving out of state. BIGGER Fudge. So she wanted to transition Avery to the new OT next week. Sigh.

I felt like crying leaving there. Not because I like the therapist so much but because Avery LOVES her. She's basically her best friend. When we get to therapy Avery run's to the rooms to see her. She know's she's there for her and she get's to play and have fun. As therapists goes she was always professional, never missed appointments without notice and always respectful of what we thought as parents. And parent's you know how hard it is to find a therapist that your kid connects with right??
She was actually the first therapist I asked "do you think she's on the spectrum?" She told me yes. She didn't beat around the bush, she gave her honest opinion.

I am not sure how hard this will be for her but her departure also coincides with the end of the summer session of school. So should I go out and get a helmet for her now in anticipation of more head hitting? Because I am imagining a lot more of that.

Let Down!

The perfect words to hear on Father's Day!

We heard words from Avery on Sunday. Clear as day. Why? She was po'ed at her Dada for holding her while she wanted to get down and play with the pinwheel her Pee Paw bought her for Father's Day. I can hear the words trying to come out. I see her moving us, gesturing us to what she needs and what she wants.

Today she knew she was going to school. As we waited by the screen door for the bus she kept putting my hand at the handle to open the door. Awesome. She knows what is going on. She know's going on the bus is her way to getting to school. Maybe the two years of watching her sister get on the bus every day has helped her transition to the bus. I hope so because she's been really good about getting on the bus since her first day of school.

I've been getting daily reports from the OT at school and while they say it's getting better every day, on our end the reports look like she has 3.5 hours of crying fits, head hitting (out of frustration) and "exploring" her classroom. The whole crying fits, head hitting is what we've been getting since starting school every day after school and my entire weekend was like that. I can tell you it was such a joy to deal with a 3 year old who was hitting her head against the wall because I was in the kitchen making lunch. :(  I almost put her bicycle helmet on her at one point because I couldn't be with her every waking moment of the day during the weekend and I was afraid she was going to hurt herself.

In a few weeks we'll be getting her tested for food allergies, sensitivities, deficiencies and hopefully starting her on a path to well being. There are a few things we think that clue us in to that she may have gut issues as part of her problems. After this weekend we are more than determined to find out what can cause a sweet little snuggle bug from holding onto her mama to hitting her head violently in a matter of seconds. There is a reason and we will find out. * Hopefully! *

The Good and The Bad

The Good
Since Avery has been done with her speech therapist from Early Intervention she's been a vocal little girl.
Now she's not talking up a storm but she's using her sounds.
She's trying to imitate the sounds of songs in movies. She loves music and dancing. So guess what we watch a lot of? Tangled, The Princess and the Frog and new to the rotation Gnomeo and Juliet. Swear it's better than that Leonardo Dicrapio one.
I've gotten her to say "hiiiiii" when I walk into her room in the am when I say it.
I've gotten her to say "Bye Bye" when getting out from the table when I say it to her.
She transitioned well to the new OT center. Which is a glorious now 5 minute drive from my house.
I got the school district to agree to giving us copies of a service log weekly of what they are working on with Avery. They were more than willing. 
At her birthday party with her Grandpa she did great with the cake. She laughed and smiled when we sang "Happy Birthday" and her face lit up when the candles where lit. Awesome she loves fire. LOL.

Her Grandpa bought her a tricycle for her birthday and I got her a helmet at the store the other day. She wore the helmet through out Walmart and had a colossal meltdown when I pried it off her that day.

Testing out the new wheels today. She just sat and played with the ribbons. 

Then well the helmet stayed on for awhile. I think she likes that more than the bike.

The Bad
In the last few months she's developed this really neat habit of sucking up her milk, swirling around her mouth and if you don't catch her she'll spit it out.
At first it was a little bit. Each time we caught her we would take the milk away.
She's on Almond Milk and that stuff is like liquid gold it's so costly. So she stopped for awhile.
Then she started up again this time being sneaky about it. She would hide in her room and do it.
So we know keep her at the kitchen table while she drinks the milk. It's helped but you can tell she's not happy.
She was so use to walking around with the sippy "her crutch" that she now pushes herself away from the table to get some space.
Another joyful thing she is doing is similar to the milk deal and that's just spitting. She spits anywhere.
Her hand, the table, the floor, the cart at Target. blech sorry but use those wipes!
I brought this up to her OT and I really can't remember what she said we should do but of course when I picked her up from therapy the OT said she never did it for her. little stinker. Have I said how much she LOVES her OT? Loves her more than me I bet.

We had a birthday party we were invited to that I decided to just go with my oldest daughter.
It was last year at this little girls birthday party (she's two weeks younger than Avery) that the differences were very noticeable. At this party Avery spent her time tossing the cans out of the bucket of ice water OR digging under the stairs for potted plants. Seriously. The rest of the kids running around like lunatics playing with all the games, toys, little bikes and my kid fixated on the cans.
I remember driving home from that party and just realizing we were dealing with much more than a speech delay and being upset about it. It was just another party that we couldn't walk out of without a meltdown from someone. It just sucked.

This year it was still hard to see a little girl who is adorable as all hell, potty trained and a talkative little one knowing she's two weeks younger than your little girl. Last year it made me upset, this year eh I was just wistful.  We know why now. Last year we were sitting on the edge of the diagnose.  Just waiting for the official stamp of Autism. 

I of course was by myself last year like I would be this year. My husband you see works a second job on the weekends. Some time's he's busy sometimes he's not so this weekend he sacrificed some sleep to hang out with Avery. I was almost to the party when he texted me asking where Avery's weighted vest was. Oops. It was in the bag in my truck since she had it at therapy on Friday. My bad. Apparently she was having a hard day. Lot's of redirecting from Daddy and she was not happy Mommy was not home. So my husband figured out to use  the weighted blanket my friend made her:

Then things got better but as soon as I got home I heard it from her. She squawked until I got her a snack and we sat down to watch Gnomeo and Juliet. Life was good for her when Momma got home. 

If you are asking me why didn't we all just go to the party well there's a few dynamics that work into this decision for me to just bring the oldest. My oldest is a Daddy's girl. If we were all to go together somewhere she would be glued to her father and not play with the other kids. I still would have to contend with Avery and she would be into everything. For me to just go with my oldest it's something just for me and her and Daddy get's to spend time with little sister. Tag teaming parties like this is working for now and while I HATE that Avery is missing out on things right now. I know it's not fair to bring her somewhere where she gets into sensory overload and we can't calm her down.

It's our life with Autism and that's how we are dealing with it this week. In a little over a week she steps onto a yellow bus for her first day of school and that my dear friends in Autism land will be a wild week.

Autism One Conference - My 1st time experience

Last week was the Autism One Conference  and it was my first experience going to a conference devoted to Autism period. I think a few weeks ago I mentioned my trepidation about going to this because 1) I am not a huge fan of crowds and 2) well I may in general be new to this I don't necessarily feel that my opinions are valid by many who have been doing this for years so it makes me uneasy.  While I felt that way still after the conference I felt even more overwhelmed by all the information I had been given.

A few weeks ago I printed out the conference schedule with the seminars and it was 15 pages long for 5 days. There were many seminars that were happening at the same time of other seminars I wanted to see so it was hard to put a priority on certain things.

The first day I went was Wednesday and I had 3 seminars I wanted to attend and only 2 happened because of a family emergency for the last presenter.

So I went to a seminar called Communication Solutions for children with Autism. This was very informative since it revolved around communication devices for nonverbal kids. Excellent presentation with great information on how to go about getting one of these for your kid.

The second presentation was called It's a Geek to me: iFun with Function. This was basically a seminar on how to use your Itouch, Iphone or Ipad to make a variety of items that normally can cost you a lot of money through extra apps. The speaker showed us how to make schedule boards, task boards, social stories and video modeling just to name a few things. You can find her directions on her website: Proudd1 - my favorite i products. It's in a pdf. form called idevices on a budget. It was very informative. I was sitting in the seminar texting my husband to make sure we could still use our old phones to do this for our little one.

I then went to lunch and had a couple of these:

I had another seminar scheduled but that got canceled unfortunately. It was about planning for the future of your special needs kid. Bummer that it got canceled.


On Thursday I returned and was set on attending only 1 seminar. It was an all day event called Special Education Law Day. ALL.DAY.LONG. This was the most informative of any seminar I went to. If you have a special needs kid in general and they need an IEP this is a seminar you should attend. I wished I had this seminar 10 days earlier before Avery's IEP meeting.  I also wished I had Avery's IEP with me to ask questions specifically for it. There was just a lot of information to absorb after 8 + hours.

I only had one of these at lunch:

Because I knew if I had more than 1 I wouldn't be able to sit through the afternoon having to get up and pee all the time. Darn tasty ice cold beer. What made Thursday hard was that it was Avery's 3rd birthday and I didn't get to see her that much before I left and almost didnt' get to see her before she went to bed.

I was able to get this out of her before she went down for the night:

That was the best part of my day!

When I returned on Friday it was the last day that I could be there and I finally purchased something for Avery and that's called a Hug Chair it should arrive in a few weeks. I am hoping she love's it. I was able to spend some time going around to a lot of the booths since almost all of the vendors finally showed up. I found Avery's OT's companies booth and sang her praises to the members staffing it. She truly loves going there and I dread the day we might have to change things.

I only attended 3 seminars that day and they were spaced out a bit. My first one I attended was called Functional Communication. It was a 2 hour presentation that had a small hiccup. It was booked into a small board room that had tables set up in it. They had to remove the tables, find chairs and the room was packed to more than capacity. It said 24 on the wall and I counted about 50 people in the room, sitting on the floor when there was no chairs left. There had to have been about 20-30 other people turned away at the door that's how important people thought this was going to be. It turned out it was very important. The speaker herself had Aspbergers and has 2 children on the spectrum. She basically showed us a better way to incorporate using a PECS type system with our children. She broke it down very easily and very logically from a view point of how our children are seeing it from us. After hearing this presentation it just made me realize what was missing from Avery's therapy this whole past year. Sigh.

I was able to squeeze out of that meeting in time to get to the restaurant to have lunch before it got packed. So I met my dear ale friend there again:

The second one I went to with my friend was called GFCFSF Diet on a Budget and it was very simple. It did have good information about writing off some of the costs of this diet on your taxes. You can find out more information on the diet help here on TACA Now's website. Which that is another thing. The Talk About Curing Autism  was awesome. They gave me a huge book about resources and basically it's a getting started with Autism battle book imo. If you have not contacted them and have just started on your "journey" please do.

The last meeting I attended was called Daily Toxic Exposure and It's Impact on Health and Behavioral Development. I pretty much felt that I wanted to live on a farm in a bubble. shudder. I ordered the book Detox Diet's for Dummies while I was sitting in the seminar. This book outlines more about what is wrong with our food chain and our environment. I really can't wait to get it.

To sum up my experience I left the seminar after 3 days feeling that I wasn't doing enough for Avery, feeling overwhelmed with all the information and feeling more sad for some of the other parents. There were parents and grandparents in these seminars trying desperately to help their children/grandchildren that you just wanted to hug them.

Another thing I noticed and I don't blame anyone for this but everyone I talked to kept referring to my child as "he" and I had to keep correcting them and saying no I have a daughter. I guess we are the minority here. 

The worst part of it was on Thursday after the IEP strategy meeting aka Special Education Law Day. There was a Mom there that was Asian whose English wasn't very great and she came to the seminar looking for help for her son. We (my friend and I) tried to give her information for advocacy groups in our area because she was from our state and the lawyer and parent advocate who were presenting were from California. I just couldn't imagine how difficult it was for her trying to put her words together so that someone would listen to her and help her. The TACA booth wasn't set up til Friday but if it was set up on Thursday I would have marched her right over there and set her up with them. I didn't even know about TACA until I read about it in the booklet from the lawyer on Thursday but had no idea they would be at the conference until I walked past their booth on Friday. I hope she finds the help she needs for her son. I feel horrible for not thinking of giving her my email at least to help her but I can't go back in time now to do that. I'll just keep her and her son in my prayers that they get the help they need.

Before and After

I wasn't thinking that this morning when I was putting together the picture collage. My oldest daughter was student of the week at school and the teacher asked for us to have a poster board about our child for the week. Well I got the note at the beginning of the week. Now this week we've had 4 therapy sessions, 2 classes for Avery, and Monday was her big ol IEP meeting. So I was a goof and didn't get the "poster board" done til this morning and I made a photo collage. Easy Peasy.  Only after looking at the collage later with my husband and the pictures were side by side did it come to mind.

It's two pictures of my daughters taken about 18 months apart. The first is when my youngest is 9 months old. She was lively, smiley, happy little baby. The second was last week nearing the age of 3 years old. She looks lost, in her own world, sad to me.

I don't know the why's of why Avery is the way she is but something "got lost" here during this time.  I always figured if I spent anytime trying to figure out why this happened to her I would drive myself crazy. I know I would. I have a few theories of why our generations children have changed so much in the last 20 years but I like to keep them to myself.

While I love the first picture of my girls, the second picture I only like. I think it's because she looks lost and it hurts me. Now any normal toddler taking a picture can get a "deer in the headlights" look on them when caught at the right time. With Avery though seeing the pictures next to each is just a reminder that she wasn't always like this.

It leads to questions like the one that stands out, "will she always be like this?" I don't mind thinking about it sometimes but I don't like to dwell on it. I can't predict the future because if I could I would be a lotto winner and I would know when the Cubs eventually win a World Series until then I can hope that she won't always be like this, we will win the lotto and the Cubs will eventually get their proverbial shit together and win a World Series before I kick the bucket.

The day after...

After yesterday's evaluation and IEP meeting that you can read about here: Rock Star Avery I can say I was disappointed but since I knew it would be a long shot that they would agree to out of district placement I wasn't surprised.

I did get emotional in the meeting which I normally have been able to control my feelings about this world we live in now. What I had a hard time was with the administrator who rides a broom in her spare time and how she talked to us. The demeanor I got from it was that she knew of all of the options out there and this was the best one for her. She even had the gall to tell us that all the private schools take long breaks as well.

Huh. The school I was at on Friday takes maybe about 3 breaks a year and is a basic year round school for a full day. When I spoke up and said I had visited a school  the look on her face was basically "oh shit." I understand the districts want control of things and they do know what schools might be a better option for your child but what I really dislike is when school districts tell you that you do not have the right to look at another school without their permission. Um no not true. The only time another school will not allow it is if that is their general rule. That they have to wait for the paperwork from that district before you are allowed to tour. When I called the school I visited on Friday the first thing I asked was if I had to have permission from the district to visit and they said NO. And considering Avery was not even enrolled yet there should have been no issues for me to visit said school. So administrator on her broom stick can sit on it.

I basically feel she will be the hurdle in this whole process of getting the right school for Avery. Considering they said they have never had a child who needs as much sensory input as Avery does was kinda of a shock. Really our kid is the worst? But they said she wasn't. So what did that mean? That the really extreme cases were automatically placed in out of district schools?

Another thing about this whole process is that it reminds me of how Early Intervention in our state works. Your child gets evaluated by one team of therapists but then they are not the one's who do the actual therapy. The state has to find therapists OR you do depending on how crappy your coordinator is. So it's another team. With Avery we got therapists right away but it became obvious right away that Avery needed a second day of OT and it took awhile to get that scheduled because the coordinator kept telling me we had to wait for her 6 month review. Oh no no no. See in the little yellow handbook for parents I highlighted the part where it said if they parents wants a review sooner than it should be done. Once I pushed it with the coordinator we got the review sooner and Avery got her second day of therapy.

How is this similar to the school district? Well the team that does the evaluations are not necessarily the same people doing the actual in class therapy. I know that from dealing with my oldest. I know the OT and the SP already.  So while the eval team might come in and see her occasionally a different person will be working with her daily. So with both examples you'll have two differing opinions about how much she is achieving. What I don't want to happen is that they make things on the books look great but in reality things aren't. KWIM? I don't want them to say she is meeting their goals because they are so low but in reality she should have more intense therapy.

So yesterday was a lot to digest. I'm still digesting it today as I got a lucky appointment to get Avery's physical done today because it was the only opening til June. And broom stick lady said it had to get done ASAP so she could get the bus situation done ASAP. blah blah blah. grr.

So my husband yesterday decided to just have ice cream for dinner. His comfort food. I decided on the other hand to hit up a local restaurant and get take out. My husband thought I was going to get Taco Bell but when I got in the car I headed to Merichka's to order a garlic poor boy and a double baked potato. While I waited I had a nice cold beer. Wishing I could sit around for some more to. When I got home with my bag and told my husband about the beer he was disappointed because he said he could have used a drink to. What was funny about this is that it only took me 20 minutes to go there, order food, drink a beer, get food, pay for food and come home. Better than Taco Bell where they never get the order right and take forever and there's no beer either.

How is Rock Star Avery today? Complete meltdown while trying to transition from activities with her OT today. Nothing that the therapists would have seen yesterday. Sigh. Throw me a bone kid. Throw me a bone!