6.26.2009

Observation Day Part 2

50% Old Wise Cynic: CONFIRMED.
As I wrote in the previous post, the School Psychologist (Wendy) was planning to re-visit to observe DS in his natural setting. They usually prefer to see them in a school/daycare setting around other kids, but we don't have that -so- home with sis was the winner.
I planned for her to come while Suzanne was here. I knew Suzanne would be readily available if DS was having one of his unusually calm days - to display a behavior or two. When he has to work really hard for her, it gets him all riled up. As I said before, he had displayed exactly ZERO behaviors for them at the eval.
I took a couple things away from that experience:
1. I was pretty certain Wendy was quite skeptical that DS even has issues that need to be addressed. He thrived, aced their standardized test (which he broke - really - not ACED), and didn't have any trouble at all. I expected that. However, professionals should realize how subtle some of this stuff is & the fact that many like DS fly under the radar until they hit 1st or 2nd grade only adds to my confirmation of that!
2. I became concerned about the SLP's (Liz) comments and body language; stating that 'she had seen everything she needed to see' and didn't need to observe him at home.
3. Overall UN-impression with the OT who continued to have no contact regarding trying to at least sit-in on one of our OT sessions, since she was unable to spend more than 20 minutes at the eval.
So, prior to this Home Observation, I emailed Sally. In a very non confrontational -yet- direct way, I let her know all of these things. She got to work - got the OT back on her feet to at least call and talk to our OT, which I felt was important because no-ones notes are ever going to be so exhaustive that they explain every detail. I guess the benefit is that if she gives me much trouble at the IEP, I will not hesitate to remind her how much time she actually spent with my little one.
She got another observation set up where Jeff and Liz will be coming to the house [this morning]. However, I also got a phone call from Liz who was upset that I 'felt like she didn't care' which I never said. OOPS!!! I really really spent a lot of time on that email so that no one would come away from it feeling like I was being overly critical of a process I know little about. The one line I could NOT leave out, though, was probably the kicker, "I would like to make it clear that it will be unacceptable to me if he is denied speech help without any outside observation." I've been warned not to be too defensive & go in acting like they are out to get us ---- but I also have to look at this process and make sure they are getting everything THEY need to make an informed decision. I guess I could have just requested an observation, but I felt this was more effective. If nothing else, it worked.
Wendy came on Tuesday.
She was here earlier than Suzanne, so we had some time before the session. DS was his usual self in play. I set up the living room so there weren't any toys out to begin with. They were all around the perimeter. I asked him quite a few questions to try to coax him to GET a toy and PLAY for her like she came to see. (noted: didn't initiate play independently or jointly with sis; typical for him) I finally picked blocks. He made a 'boat' and a 'house', which are very scripted items. I also tried to get him to make a nondescript item like I did and he copied it exactly. I encouraged him to no end to make something different. Nope.
After a while of him Persevating on her Laptop instead of playing with anyone, I told her that the real picture of his play would be if we backed off and tried to talk. He always gets REALLY upset if any therapist and I try to talk. Of course, this Wendy was new, so he wasn't all that upset about it. But, he did use some atypical behaviors to get her attention back (noted: grunted and got in her personal space to get attention).
Before we left him alone, he wrote in the air, jargoned quite a bit, and also did this really funny thing where he stood at the couch and 'journaled' while making funny mouth noises and talking under his breath. (noted: that was weird)
We headed out of the room. When we backed off, she proceeded to tell me about other options (other than preschool) where we could foster involvement with typical peers. She said to me that nothing seems to be the right fit for him and they are trying their hardest to figure out what he needs, but he is not impaired enough to be put in a class with all children with IEP's. I asked her about the mainstream programs & she stammered around and said that they were really programs that children who need FULL DAY support are usually placed in.
[At this point, I am appalled that she has admitted they have NOT had any sort of group meeting to discuss the other professionals findings/observations, YET she has already made up her mind and has decided he doesn't qualify. Steaming!!!]
THEN. She lit into this story about the 3 boys she nannies. Basically they are really smart. And they don't have good play skills. And then she says "and THEY by no means have Autism". [thinking to myself what the purpose of this story is... conclusion... comparison to DS's genius and play skills, which were the only observations so far.]
I made it VERY clear and precise for her that certainly any child with that profile has ONE piece of that 'autism' puzzle, and while QUIRKY nonetheless, does not have autism. It isn't until you ADD 1 + 1 + 1 + 1 together that you have ALL the pieces and a child actually DOES have Autism. And she says, "To tell you the truth, I have yet to see that sensory piece at all".
I laid it out for her: THIS is where you need to take MY comments as a part of this team and trust the information provided to you via his therapists who have known him for all this time. They all have very detailed notes and are all willing to do anything it takes to get all of you the information you need. Certainly there have been children before who 'test' well. But, his entire EI team are in agreement that while he may 'fly under the radar' at first, is clearly impaired and needs additional support so that when he DOES get to kindergarten he will know how to thrive.
At that moment, Suzanne came.
Long story short [because I'm getting too long winded here], Wendy's eyes bulged out of her head when she finally got to SEE it. I could see her watch in amazement as this Quirky Genius turned into a child with Autism before her very eyes. I really cannot say WHAT she took from the experience of his behaviors - except for 5 pages of typed notes. I asked her as she left if she saw anything new that helps put all those pieces together and I got a definitive, "YES".
TOTAL exhaustion.
I cannot STAND this. Focusing on his impairments is like the worst thing you can ask a parent to do over and over. Yet, because of the way he presents, I have to. It is very clear to everyone on his team, myself, and some others in his life that there is no longer a 'grey-area' for him. I don't have that question anymore, "Is it really autism?" Yet, as all of his team have said to me on multiple occassions - because of the way he presents at first, he is at risk for falling between the cracks. He has an endless list of potential - and I am so thankful for that. Not every parent can say that.... not every parent gets to see this hope so early, so blatant, so quickly. I have that. But I also know that he's going to need some support to get there. Please somebody, help me out here. I can't do it all by myself.
Next observation: 9:30 this morning. SLP and Special Ed. teacher. Now I have to figure out why it is that I made them come.... hmmm... what do THEY need to see? Back to the grind.

1 comment:

Laura said...

make that cynical and battle weary. oh that is exhausting. Did I mention I dislike psychologists? Sounds like you're fighting the good fight though.