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.

Oh I'm Sorry

hmm. I keep hearing those words played back today.

Today we took the kids to the grand opening party for a new trail in our Forest Preserve system that's only about 3/4 of a mile away from our house. A whopping .3 mile long trail.

For us it was a big deal to get even out of the house. Avery didn't want to get in her stroller. She wanted to be in the back yard. She was mad, screaming and kicking me. I didn't back down though. We were not going to be housebound again. So I started to walk while carrying her. All 32 lbs of her. We were only 2 houses down from ours when she was screaming in my ear and I could hear my husband go "This is crazy" and wanting to stop and go home. I said "No we are going". And we went.

A block down I put her down so that she could pick some flowers aka weeds. Then I picked her up again for another two blocks were she was calmed down enough for me to get her in stroller. Another 2 blocks and we were at the trail finally! Success!

At the trail they had a bouncy house and a big giant bouncy slide, a band and a huge tent with kids activities.

While going through the tent of kids activities she did pretty good. She made a potted plant, threw some rings to get a ice cream voucher and made a bracelet. When we got to the station to make a coffee filter butterfly the volunteer was so nice. She was chatting her up and asking her name. I knew Avery wouldn't answer so I explained that she was Autistic. Then I heard, "Oh I'm sorry". Followed by compliments about how pretty her eyes are, how cute she is, etc.

I thought about it later but I get why people say that. I probably said that years ago to.

When I look at her I am so happy that she is who she is in the sense that she is perfectly healthy and is becoming a little person who is learning to tell us what she wants. We are blessed. 

Today was a great day for her. When we left the trail party we went to McDonald's at the end of the trail. The first time ever eating in the actual restaurant!! Both of the girls were happy!

Avery had ice cream as well today and I helped her with it. She kept saying, "MY ice cream!" "Mine!" So stinking cute!! She did really well. She ate half of her lunch which considering she was in a completely new environment and was watching everyone around her was pretty good. She transitioned out of the restaurant well to!

It was just a pretty neat day!

Don't forget that if you can it would be great if you can support me in my Run for Autism by making a donation HERE!!!

Run for Autism Fundraiser

I started this post a few weeks ago...

Last night we had bad storms come through our area. Hardly anyone got any sleep and I should have known that the little one would be up early today. I did my normal Saturday morning routine of getting ready to go to my Weight Watchers meeting. I then headed off to my meeting and came back home pretty much right away since we were having a friend come over to help my husband with his truck.

As I walked in the back door I heard a "Mommeeee!!" I knew immediately it wasn't my oldest but the little one!! She started screaming for me and running to the door. That was awesome. I ran up to her and gave her a big squeeze hug and had lot's of tears.

***

What a difference from last year to this year.

A year ago my little one would not have recognized I even left the house much less reacted to my return.

A year ago the only word she had in her vocabulary was probably "NO!"

A year ago the ability to transition from activity to activity was so horrible that I just expected screaming and tears at every turn.

A year ago she had no sleep issues and slept all night for 12 + hours.

A year ago she didn't know her ABC's.

A year ago she didn't know her numbers.

A year ago she couldn't point to what she wanted.

A year ago she couldn't tell me what she wanted.

A year ago she didn't call me Mommy.

A year ago she was so insanely frustrated with trying to tell us what she wanted that she would hit her head all the time on anything.

A year ago she never could express how she wanted to be twirled or held or swung on her swing.

A year ago she couldn't communicate with anyone at all.

Now she can use her communication device to tell us what she wants or needs.

Now it may take many cues but she can transition better through her daily activities.

Now she has a vocabulary of about 75 words that she may or may not use when needed.

Now she knows her ABC's and can sing them.

Now she can recite her numbers up into the 20's.

Now she points or leads us by the hand to what she wants or needs.

Now she can call her Dada, her sister (sometimes) and once in awhile I will hear Mommy in between her jibber jabber.

Now she will take my hand and wait for the bus nicely but will get distracted if there are flowers near by.

Now she has made it through a school field trip at the zoo that I never thought was possible.

Now she takes the leading on going to bed, she may fart around once in bed but compared to the issues we had last winter it is not a problem.


While she still has a way to go she is doing so much better than she was a year ago. Like other little 4 year old's she loves The Smurfs and the bird movie RIO. She loves birds so much that she has quite a collection along with fake flowers that she loves to carry around.


This year I am doing the Chicago Marathon and raising money for Run For Autism. The Organization for Autism Research focus is on applying research that directly impacts the day to day quality of life for those with Autism. The organizations research is based around education, communication, self care, social skills, employment, behavior, and adult and community living. 

I am raising money through my running blog that has give aways as well: 

If you want you can just donate here!! 

Or

You can go to my running blog Baby Weight My Fat Ass  and enter the give away after making a contribution to my donation page as there are some prizes that aren't related to a running enthusiast!   


I understand that raising a child with Autism is expensive and we all look to keep our money close to home but I believe in the research that has helped my little girl make great strides. Any amount of a donation would be wonderful!!


Thank you!

I should write a post..

***Please excuse the spacing through out. I don't know what happened and I can't fix it!***

I think that a lot.

Then I feel that what I say doesn't really matter to the majority of people.

Then I feel that I don't want to deal with someone who thinks I hate my child because I hate what Autism does to her.

Then I feel like I don't want to deal with the division in the community.

It's there.

Sometimes it is loud and clear.

Sometimes it's the quiet little words that people sneak in that set you back and make you hesitant to post.

But it is my blog.

My words.

My feelings.

I shouldn't be afraid to post what I want but at times I am.

So I want to tell you that for the second year in a row I went to the AutismOne Conference  held in a town not far from where I live. I went last year: 2011. I know that Jenny McCarthy is a dividing force in the community. I can see why. But there is much more at the conference than what people think ie: biomedical, supplements etc.

These are the titles of talks I went to:

Applied Behavioral Analysis for Individuals with Autism and Developmental Disabilities 

If your child is newly diagnosed or you are unsure of therapies this might be something to go to. This was actually with a really boring speaker, imo.  I have seen James Ball talk last year with Temple Grandin and he was so engaging he made ABA therapy sound interesting (which it really isn't at times!)

Know Your Special Ed Rights: IDEA Overview & Preparing for Advocacy 

I went to this last year and spent the whole day listening to it. I went back this year to Thank them. Lynne Arnold actually said she remembered me from last year's conference. I used some of the idea's to get a daily report from my daughters school. They were very happy to hear that she has made progress. This to me last year and still this year is one of the most important things a parent with a special needs child needs to attend. It is an all day talk. But what you learn in those 8 hours is so damn helpful. 

How to Set Limits Without Losing Your Mind: Behavior Strategies That Make Life Easier

This was interesting in the aspect that it was a gentle reminder not to be so hard on yourself and how to learn to deal with your child's actions.

Anatomy of an Autism Claim 101

I bet you think that's for like vaccine claims right? Wrong. That's what I thought it was to. The description in the booklet was just that short. Unless you looked up the title you would not have known it was about insurance claims. When I was walking through the conference hallways I saw the lawyer and the insurance advocate at a booth and on their sign and pamphlet it talks about INSURANCE claims. 

Holy hell every damn parent with a kid with special needs that I know of has damn problems with their insurance. If you go to this next year and you see this talk make sure you bring a copy of your insurance policy and denied claims. They will help lead you in the right direction. Our insurance flat out will not pay any claim that is related to the Autism Spectrum Disorder because they are a self funded policy.  But what if you went there with tons of claims that went unpaid and they lead you in the right direction and suddenly you had thousands of dollars of claims taken care of? Wouldn't that be wonderful?

This was just for second day of the conference on Thursday. I only attended 2 days (Thurs & Friday) and it was held 5 days. 

On Friday I attended these talks:

Natural Approaches to the Dysregulated Nervous System: Healing Sleep, Stress and Seizures

This was interesting. My little one has sleep and stress issues but no seizures. It mainly was focused on the seizures aspect but talked about how all three are intertwined together.  

Shining the Light on Sequential Homeopathy: Essential Tools for Recovery and True Healing 

Basically it was homeopathic therapy. Nothing wrong with trying a homeopathic approach to helping our children. I actually take a natural herb to help with my anxiety. Since being on a natural herb my anxiety has been greatly curbed and I'm not angry and mean like I was on a the pharmaceutical drug my DR prescribed for me. So this was a very interesting talk to sit through.


Food with Benefits

I caught the tail end of this talk. This was interesting in the aspect of trying to eat healthy or if you have a child with gut issues. We actually think our little one has some underlying gut issues but we are unsure about putting her through the testing but most likely will one day. 

Estate Planning for Special Needs Children – What Parents Need to Know

One of my best friends and I attended this together. We were told when we got little one's diagnosis that we should primarily put together a special needs trust for her. Which after 2 years we still haven't done. What this talk did was emphasis how important it is to have one done and how important it is to have a letter of intent written.   

All WE Can Handle. WE'RE No Mother Teresa!

This was with Kim Stagliano author of All I Can Handle: I'm No Mother Theresa. It was the last talk I actually saw during my two days at the conference this year and it was by far the most heart felt, funny and serious one I heard. Not only did she joke about the fact that her 3 daughters were entering puberty at the same time (all got their periods for the first time while she was away) but she also shared with us the story of abuse her nonverbal daughter had experienced at the hand of the aide on her bus. My little one is nonverbal so this really hit home with me. Her book is next on my reading list. 

 

When I first signed up for the conference for a whopping cost of only $25 I had put in to try to get into the spa night held on that Friday night and it was free. I don't get to do that kinda of stuff. I found out in early April that I got into it. So I was able to get a mini facial and massage, paraffin waxing for my hands, and eye brow threading (basically getting your brows done). All this happened while being served free wine (HELLO) in a dimly lit room with other care takers trying to relax for the evening. It was really, really great. I left with a nice goodie bag as well.  

 

I mentioned the cost of the event at only $25 because that is important to me. I can't afford to pay $130 to see 3 speakers in 1 day. That was the cost of the Temple Grandin & James Ball talk I attended last year. The only way I was able to attend that was because of a very special person who graciously donated the cost for me to go.  So many people are trapped by financial constraints that they feel lost when all they want to do is help their kid(s). I know I do on a day to day basis.

It was a lot to take in in two days. Many people attend the whole 5 days. I met Mom's from Norway, Canada, California, Iowa, New Jersey and my own back yard of Illinois. 

I can't blame people who are looking for something that might help them when the majority of them have been told "don't, there's nothing you can do for your child". I know I sure as hell wouldn't like that answer from a Doctor if I asked "how can I help my child?" That is not an acceptable answer to me. And it shouldn't be for a Doctor either.  

Did she really just say that?

I had just picked up the little one from her new speech therapy place. She LOVES the place, her new therapist. It's been wonderful. In the five minutes I took to go from my car, get Avery, get back in the car I missed a call from the school nurse at my older daughters school. School lets out in 40 minutes so I couldn't imagine they were calling me to pick her up.

When I got the nurse on the phone she started to ask me if I knew about my daughters .... dandruff.
Yes.
Oh ok you checked and she doesn't have lice just dandruff.
Oh ok so it's all good? Yes ok.
She has a special shampoo that we use.
No I don't do it every night.
She HATES to have her hair combed/brushed.
It's a hard thing to deal with.
Her hair is long and thick. We've made two donations of her hair already and she's not even 6 yet. 
Oh she let you pick through her hair?
Oh ok.
Yeah because you are a nurse and she get's that nurses and doctors do that stuff.
She does have a sensory issue with her hair.
NO she doesn't have a full blown sensory processing disorder.
Everyone has some type of sensory issue and that doesn't mean they are going to be diagnosed with the disorder. 
NO she doesn't have Autism.
Her little sister has Autism.
Really? There are different types of things that fall under the Autism spectrum? 
Why YES I do know about the different kinds of Autism.
No she just hates having her hair combed/brushed.
I pick my battles and this is not one of them.
Yes she get's OT at school.
Again she does not have Autism her little sister does.
Again she does not have sensory processing integration her little sister does.
This is not one of the things that is a make or break daily routine.
NO she doesn't have Autism or SPD she just hates to have her hair combed/brushed.
I am a pick my battles type of parent.
Ok thanks we'll work on it.

My look yesterday as well with more of a pissed off expression to add to it.

And when I went to go pick up my daughter the teacher didn't say a damn thing to me.  Not a "she really can't sit still, it's itchy, distracting to her and the other kids." NOPE. Not a damn thing. There was no nurse there either. I've seen the nurse in action with other parents so the phone call didn't really surprise me but if she had tried to educate me about Autism and SPD (Sensory Processing Disorder) in front of other parents I probably would have lost my shit.

Now I understand dandruff is gross. The scene with Ally Sheedy in The Breakfast Club usually makes me want to hurl but it's not that bad. But we are working on it. When she was a little baby she had cradle cap ie. dandruff and on a baby that's much easier to take care of than 5.5 year old who will scream bloody murder when you are trying to comb out their hair. If she was a boy her head would be shaved but that is not an option here yet.

If I thought cutting her hair short would help with the "I don't want you to comb my hair freakouts" than I would do it but we've gone down that path before and it didn't change anything.

Who knows maybe I'll get a bug up my butt this weekend and take her for a cut but I doubt she would want her hair cut now. grrr.