A few updates

I know I'm not posting a lot but I've had a very crazy week here.

Last Thursday we visited a school for Avery that she could start attending right away if we liked it.
Her teacher and her occupational therapist joined us on the tour because we wanted their opinions on what type of environment would be good for her. Plus they needed to visit it for future reference for other kids. In our opinion the facility is best for very severely functioning children and adults. It just didn't feel right for her.  Plus the switch would only be for a few months as this facility wouldn't have a specific dedicated Autism program for her to be in.  The idea of all day school was enticing but not at the cost of breaking up her normal schedule right now to change it in a few months. We crossed it off the list.

I had talked recently about how Avery has been very difficult recently. To the point even her teacher was asking what was happening at home. oy.  On the second day at my new job while I was working on some computer based training I got called twice on my cell by a number I didn't recognize. I hit voicemail and figured I would get it later. Then my husband called my cell. Damn, it must be important. He was calling because the school nurse was trying to get a hold of me to come pick Avery up because they thought she had hand foot mouth disease. umm great. When I went to pick her up I could see the redness in her hands that they talked about. We talked about her behavior recently and that she even punched her aide that morning. Another oy. When I got her home I really couldn't see what they were talking about. When we got to the Dr's office the Dr basically said well it doesn't come and go so that wasn't it. BUT she did get a look into Avery's ears and one of them had an infection!!!

The past 2 weeks where she was just insanely bad behavior and CONSTANT stimming by spinning was most likely the ear infection!! She had no way to tell us it hurt. She nor her sister were ever the proverbial "ear tugger" sign of an ear infection. We started her on antibiotics that Monday night, by Wednesday the spinning had calmed down tremendously! This was part of the reasoning of not sending her to that other facility now. Her teacher and I both noticed her stimming had calmed down a lot in the last few days and I would have hated to move her to another school when it really was a medical reason for her being so disjointed.

We do have 3 other schools to visit in the next few weeks. Two of them she can't attend until she is 5.  The other one she could attend now if we think it's a good fit.

A new path

I'm not sure if I wrote that we were having Avery's annual IEP this week.  In fact I commented to my husband that this was really early for her IEP since last year we had it in March. In May she will be 5 and will go on to "kindergarten". When the paperwork showed up at our house it listed the kindergarten teacher for our oldest daughters school. It is our home school. So basically she would show up and go into agreement and say that that the home school is not the right place for her. Avery is basically in an out of district placement because while we have two schools in this one town they are two different school districts. So when the paperwork showed up and listed that teacher I thought well that's crazy she's not going to that school like ever.

But something happened between correspondence between her teacher and I in the last few weeks that made me think about what was going to happen. Her teacher kept mentioning options. Now she's special needs. She is nonverbal Autistic. She has severe sensory issues that impede her ability to learn and function. So when they mentioned options I thought ok we are starting the process early so that we can investigate a good out of district placement for next year.

What actually happened at her meeting yesterday shocked me.

As the group was discussing how far she has come I started to get the feeling that something was off. The previous above mentioned Kindergarten teacher wasn't at this meeting. Then they started to talk about how while she has made progress it's not the type of progress they thought she would be at by now.  Wow.

They talked about how her sensory issues are so much more profound in the last 8 months than they ever were when she first started. How frustrated she gets, how angry, how violent she is towards herself. These are things that are occupying her days. That they don't have the right tools to help her.

They believe the right environment for her would be a full day program. Like NOW.

As in there is another school we would like you to look at and if you approve we would like her to go to that school for the remainder of the year.  If you don't approve of it then she would continue at her current school until the summer when she would then progress at age 5 to kindergarten. *I had asked about one for her when she first went into early childhood preschool but they wanted us to give their program a chance and there really wasn't any options around. Most private schools won't take kids until they are 5 and in kindergarten. ** we also acknowledge that we are very lucky to have a district that says "yes we can't support her and we will put her in private placement, that's rare. This then leads also into her placement for next year with a full day Autism program at a highly respected private school.

My husband and I will be touring the other facility tomorrow am. There is currently one other little kid in the program that she will be in and that little girl is the same age as Avery.

We've always said Avery needs more than what she was getting at school. It's not that it's a bad program it's just not the right program for her and her cognitive delays.  While I am looking forward to her getting more services that she needs I am also really afraid of how this transition to a new bus, new school, new teacher, new and longer day will be for her. It's a lot of stress for her (and us).  I also hope she doesn't feel like her "school family" abandoned her either. Sigh.  Also the guilt that we haven't done enough for her is at an all time high now because of this. It's not the schools fault they always prop us up and tell us we are doing a great job etc but it's still disheartening to hear what was said yesterday.

Taken in early 2012

So that's where we are at now. Probably a new school for Avery within the next couple of weeks. So if my posts are not abundant in the next few weeks it's because well, life just got in the way.

Don't Stop Believing

There are days I hate Autism.

I do. It riddles my little girl with anxiety and frustration. Sometimes she can be so unhappy she takes it out on herself or me.

She's 4.5 years old and scared of the toilet. We are working on it because we know she can hold it, she tells us after she goes but the whole sit on the toilet scares her since they are so freaking loud to her.

She can request certain food and drinks on her communication device (IPad from the school district).
Though now most of the time she just tells what she wants but doesn't understand if we are "out" of something.

She knows her routine at therapy when she see's her favorite person Julie who is a million times more patient with her than I can be at times.

Sometimes the daily notes from school are depressing as can be. She threw this, she refused to come to circle, she ran down the hall, she just laid on the floor. My favorite from a few months ago "She told a bunch of kids to shut up!" That is quite funny actually. See her big sister from the minute she wakes up until the minute she goes to sleep is nonstop talking. Basically she narrates her life. She sings it to. Which kinda of makes up for Avery not talking like a regular 4.5 year old.  But if you are a kid who doesn't like a lot of interference it can get annoying so one day she had had enough of the background noise at school and told the other 4 kids in her class to stop talking in a not so nice way.

But there are days though that Autism can make me celebrate the little things.

The daily notes from school talk about the daily exercise to write their first names. Some days she does it with hand over hand help. Other days she could care less and won't even go to the table to do the activity.

So today we were waiting for the bus at the back door and with the temperature being zero the window was pretty fogged up.

I started writing the letter A and hoped she would follow and write A instead she said V! So I asked her what comes after v? She said E! I asked what comes after e? She said R!! I asked what comes after r? She said Y!!

That's right Avery, AVERY!!!

It was a reminder that sometimes I need to stop focusing on the stuff she can't do and be grateful for the stuff she can do.

Routine, repetition, social stories, therapy, communication devices, early intervention, biomedical therapies. Just a small list of what we do for her on a daily basis.

A donation to the Organization for Autism Research would help with more research into treatment options for kids like Avery. Please if you can today spare a few moments and think of making a donation to
 Team Avery - Don't Stop Believing

Some day somewhere thanks to a donation to help fund Autism research another Mom or Dad or caregiver will have that joy of seeing their child have a great moment like I did today.