Friday, June 1, 2012

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.  


  1. Wow that was fabulous info .
    Thank you so much for sharing
    The community really is divided but I don't let it bother me too much any more ( though sometimes a rare mean comment will just leave me smarting )

  2. Thank you very much for sharing. I need to start investigating these type of events in my area. Sometimes you do feel very much on your own.

  3. how are you doing ?
    PS thanks so much for reading my blog and commenting - love your comments