After we withdrew Emerson from his private school, I really didn't know where to go next. I posted something on Facebook about how upset I was, and I suppose it was slightly alarming because several people posted back asking if I was OK. One of those people was a high school friend, Jennifer.
*Ding*
I remembered seeing something on Jennifer's wall about her attending an Autism conference.
*Ding Ding*
I remembered hearing from someone somewhere that Jennifer worked with special needs children.
* Ding Ding Ding*
We have a winner! Someone I could maybe contact to give me information on what to do next. I wrote to her right away and she offered to speak to me via phone at any time. Turns out that Jennifer not only has knowledge of ASD, she evaluates and teaches children on the spectrum! She was a wealth of knowledge and I'm sooooo grateful to her (Hi Jen! *waving furiously*) for not only taking the time to speak to me, but also for reassuring me. I promised Thomas I would only spend 15 minutes on the phone (because he wanted to go to bed), but I spent nearly an hour with her...and could have talked for a couple more.
Jennifer told me the kinds of evaluation tests to ask for (as it turns out, however, no one I spoke to in town used what Jennifer told me was the "gold standard" in evaluative testing), talked to me about different treatments, gave me some websites to look up (and later messaged me a bunch of links, most of which I have listed here). All in all, she is a treasure and I'm so happy that I have someone in my life who I can turn to if I have questions about teaching Emerson, concerns about treatments he is receiving, or if I'm curious about where to go for the latest developments in ASD.
After speaking with Jennifer, I knew where to start my search for help. I spoke to several people and called our local Autism Chapter and was given names of psychologists who could help us. Next up, checking out their websites, calling to make sure they accepted our insurance, and deciding who seemed like the best fit. At the same time as I was doing all this, I was also combining all our notes into a binder for future reference. I included the evaluation done by the school board, e-mails from Emerson's teacher and the principal at Sts Peter & Paul, and notes the daycenter wrote about his behavior after we placed him back in their care.
We made an appointment at Donna Aucoin & Assoc. and met with a wonderful woman, Jessica. She was very easy to talk to, listened patiently as we went through our list, took copious notes, asked questions for verification, talked to us about what would happen next and what they use for evaluating purposes.
The tests Aucoin & Assoc use are the CARS (Childhood Autism Rating Scale) and GARS (Gilliam Autism Rating Scale). We filled them out as did Creative Learning (Emerson's day center). I photocopied the sheets and Thom and I each filled them out and compared notes, discussing--when there was a difference--which answer we felt would be the best to go with. I then filled out the "official" sheet with our agreed upon answers. On both, we added up our numbers and they fell into the Mildly Autistic range.
[Side note: For those unfamiliar, both CARS and GARS using a frequency-based rating scale on a number of different areas such as Social Interaction and Communication]
Our next meeting with Jessica would be when she would meet Emerson for the first time. She wanted both Thom and I to bring him in for separate sessions so she could observe our interaction with him. Imagine my surprise when we got into her office on December 20th and she said she had Emerson's evaluation completed! Huh? You haven't even met him, lady. Apparently, though, they based it on our answers on the CARS and GARS as well Creative Learning's. Interestingly, while our answers resulted in a score of Mildly Autistic, Creative Learning's score came back as Severely Autistic...or maybe it was worded Highly Autistic, I can't remember.
Again I say, HUH??? Emerson? Severely/Highly Autistic? How do you figure? At the time, I didn't ask to see Creative Learning's answers, but I called Jessica recently and she will show them to me the next time we go in.
Now, everything I've read in regards to ASD and evaluation thereof has talked about parental observations as well as those made by a professional evaluator over a period of time. Anyone have something to say about this? Anyone? Anyone? (Bueller? Bueller?) Should we be concerned that she had made a call before even meeting him? Is it a common thing to evaluate based on parental and daycare provider evals only? Please, if anyone has an opinion/concern/observation...comment away!
After observing him during our play-meeting, Jessica did verify that she saw some of the traits we had discussed and that showed up on the CARS and GARS questionnaires. So, what did Emerson and I do at our playdate in Jessica's office? She gave me a list of things she wanted us to go through as she sat in the corner taking notes and giving me verbal clues when she wanted us to move onto the next activity on my cheat sheet.
First up was simply to play with the toys she had set out on the floor for us. There was a tea pot and cup with some plastic food, a few Disney princess figurines, a couple male figurines, and a whole slew of plastic animals. Of course Emerson zeroed in on the animals. He immediately began setting them up in a line. *click click click click* I could hear the laptop keys clicking away and I knew what Jessica was going to want to see, so I started moving the animals out of place to ask Emerson what kind of animal it was or their names were. He, as I knew he would, took them from my hand and told me they had to stay in line. Every time I tried to move one, I was fussed at and told to leave them be. I tried to get him interested in some of the little figurines, but they just went into the line as well. There was no interest at all in the tea things, other than to pretend to cut a chicken leg with a toy knife.
After a while, Jessica gave me the signal to move on to something else. Uh-oh. I knew that would be tricky because I wasn't able to give Emerson a verbal warning that we were going to be doing something else after xyz (usually, at home, I let him enact one last scene or I slowly count to 10). As I suspected, he started to fuss about having to clean up and put away his animals. He wanted to leave them where they were. He didn't want to do a puzzle--our next activity. From experience, I knew what things I could try to get him to cooperate. What worked this time was to ask him to line the animals up against the wall based on where they lived. The zebra, elephant and antelope went into the African Group; the polar bear, seal and penguin went into an Ice Group; and the whale and shark went into the Ocean Group. Since all his animals were now in some sort of order and were watching us from the wall, we could move on.
We didn't have much time for the puzzle since it took so long to clean up, but he did put together a few pieces. He seemed distracted, so Jessica gave the signal to move on to the next thing--drawing a picture of our family. Emerson drew Daddy first and told me that it was Daddy with no hair because he cut it all off. He then wanted to write his name and I was unable to get him back on track with drawing the rest of the family. I asked him who else was in our family, but he just told me no...he wanted to draw his name.
Next, Jessica signaled that I should leave the room. She had told me previously that I should leave however I felt was best, so I told Emerson I had to leave real quick to do something and he could keep drawing while I was gone. I stood outside the door and could hear Jessica saying things to him every once in a while and Emerson answering. After a bit, she knocked on the door and I came back. I said Hi to Emerson and he just looked up at me and continued to play with the animals he had taken back out. Jessica and I talked while he played.
That's when she told me she had his evaluation completed. She also said that she just fell in love with him; she thought he was great. Some Social Skills training, she thought, and he'd be fine. He is definitely at the high-functioning end of the spectrum. I inquired about the sensory issues and she felt it would be best if we had a Pediatric Occupational Therapist evaluate him (Jennifer had told us the same), and that she would contact our pediatrician for a referral.
She still wanted to observe Thom and Emerson together (there appointment is tomorrow, in fact) and then she would have us come in to start some social skills training and would give us things we could work on at home as well. He would still need an IEP (Individualized Education Program) and--the really discouraging news--Lafayette Parish School System is horrible to deal with when it comes to Special Needs kids. According to Jessica (and since then, one other professional), we'll have to fight tooth and nail to get what we need for Emerson. Great. She did send in a referral to the school board to inform them of Emerson and she said we'll see what happens from there.
By law, they have to provide Emerson a free and appropriate education in the least restrictive environment. He has to be allowed to be mainstreamed if his special needs are not of a severity requiring him to be held in a Special Education class. The problem with Lafayette Parish schools, as I understand, is getting them to agree that Emerson does have special needs. I'll keep everyone up to date on that!
Wow...are you all still with me? These last few posts have been long ones, but I'm trying to get everyone up to speed with where we are currently. If you know me at all, you know I'm long-winded when it comes to my writing! LOL
We've also had a consultation with an OT, but she doesn't work with children and, besides that, had no experience with Sensory Integration. We have our name on a waiting list for someone who does, but it's months long. I called a 2nd place yesterday, that seemed very promising since they specialize in a sensory integration approach with a sensory room and everything, but there again, their earliest appointments are in March. I'm still waiting to hear back from someone there for a free phone consultation, and I think they put us on their waiting list too. With any luck, one of those places will have a cancellation! I'm going to have our Dr fax referrals to both places...just in case.
I think that pretty much catches us up to the here and now. My next post might be about Thom and Emerson's session tomorrow, or I might delve into the definitions of ASD and SPD for the benefit of our family and friends who don't know much about it.
Thanks for joining us, everyone!
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