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?