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.