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.