Our Journey - Part II

As I searched the internet for information about kids struggling with language, I found three key things:

• Books by Thomas Sowell about late talkers. Though not a perfect fit for my daughter, it was encouraging to see that language difficulties weren't always related to intelligence or ability.

1. Late-Talking Children
2. The Einstein Syndrome

• The Natural Late Talkers Group (message board). These folks are amazing.
  
• Dr. Stephen Camarata and his wife Mary Camarata.
  

I read Sowell's books, and they were encouraging. Some of what he wrote fit Hannah and some didn't.

I joined the Late Talkers group. This was a very important step on our journey. These parents have children in every age group (the ones with older kids were especially helpful to me because they had already been where we were at the time). A couple of things about this group: they will not diagnose your child (nor should they); they are not against having children evaluated for their language difficulties, but they are strongly against having those evaluations done by someone unqualified to do so and against sticking a label (ie, autism)on a child for the purpose of obtaining services.

I called the Camaratas. Hannah was not quite two years old at the time. I spoke at length with Mary and received valuable guidance and instruction about how to facilitate language. A month or so later, my mom died and we got off track a little bit. At the beginning of 2004, I felt like we needed an evaluation for Hannah, but I was very leary of getting a label stuck on her that didn't fit, but would likely "stick" for the rest of her life (at least academic life). So with some guidance from the Camaratas (they didn't know anyone specifically in our state) and some research, I made an appointment.

Initially, my husband and I met with the folks at the center alone. I had many questions and wanted verifications about what they believe and how they work with children before subjecting Hannah to them. We both felt ok with them and their process, so I brought Hannah in for her evaluation ... HUGE mistake.

When we arrived, they put us in the evaluation room. The room was filled with toys and one book (I learned later from the Camaratas that an eval room should be very plain with no distractions). Hannah has always loved books and that's what she wanted to look at. When the evaluator came in (a college student, not the staff member I thought would be there), she asked me to leave and said I could observe through the two-way mirror. What I observed that day was a child I had never seen before then or since. Here's what happened in a nutshell:

• She took the book away from Hannah first thing. But she put it in Hannah's sight and her reach. When Hannah would go to get it, she would sternly say "NO" (I say "no" to many things, but not to books).
  
• Hannah became very frustrated and I finally opened the door and said to the student "give me the book". I quietly told Hannah to play with whatever it was the student wanted her to do and that she could look at a book later. Then I walked back out. And Hannah was fine with that (remember, she's barely two at that time).
  
• This person just bounced from one thing to another with Hannah, giving her no opportunity to explore or to relax. Just as Hannah was beginning to enjoy one thing, she would take that away and say "do this". The dizzying speed and lack of any control of what was going on around her moved Hannah quickly into panic. Not a tantrum (she's never had one), not shutting down, just panic ... much like I might feel if I were in the middle of Beijing and needed help but nobody spoke English. That's the problem with a person who has a receptive language disorder - they have trouble understanding (processing is perhaps a better word, because they are not deaf) what is being said to them.
  
• As I was watching this with the director (I gave her an earful - politely, but firm), I realized they were not interested in Hannah. They were only interested in giving a serious diagnosis and signing up a new client. I had learned from the Late Talkers group and the Camaratas that evaluations and therapies must be child-led (not child controlled, but the adult has to make some concessions and adapt to the child a little bit as well), and this evaluation was not child-led at all.
  
• I went into the eval room and picked Hannah up from the middle of the floor, got our things and walked out. I was followed closely by the director and the student telling me that the evaluation wasn't done yet (I informed them that it was), and they told me that my daughter had autism, was in serious trouble and if I didn't get her help right away she would never be normal.
  

Normal? What is normal? I suppose to them it's having little stepford children who all develop and act the same way. I knew in my gut that Hannah wasn't autistic, because the key marker for true autism is a lack of motivation for social interaction, and Hannah has always been a very social little girl. Some other red flags from this experience:

• They said they hadn't completed their eval when I took Hannah away and ended it myself, and yet they still gave a diagnosis even though they weren't done.
• They had not used even the most basic of tools in regards to diagnosing autism (such as the CARS), and yet they "knew" that's what was wrong with her.
  
• They gave Hannah credit for NOTHING. When she would complete a task (put the square block in the square hole), they said "it's just a learned behavior". Or when Hannah would do something she was particularly proud of, she would make the ASL sign for "I did it" and verbally say "did it!", they again said it meant nothing and was "just a learned behavior". Other than breathing and heart rate, much of what we all do is just learned behavior ...
  
• The biggest red flag of all - this was a student and her semi-professional director. A semi-professional is someone that is not qualified to diagnose something like autism (we were there for a speech/language evaluation), and yet does so anyway. You'll find this a lot with school systems as well.

I buckled Hannah into her carseat (while still being hounded by these women in the parking lot) and we left (no I didn't run them over). I was steadfast while I was there, but once I was out of there, I pulled into a parking lot and called my husband (shaking and crying). He reassured me that I did what was right for Hannah. We stopped at a bookstore on the way home and picked up a few new stories for Hannah to enjoy as much as she wanted.

Upon arriving home, I called Mary Camarata and told her of our travails. At that point she said .... let's get you in here so we can see Hannah (they are in Nashville, TN at Vanderbilt University). We had to wait 6 months for an appointment, but as you'll see later, it was more than worth the wait.

OneMom