KathySRW

Pass the chips.

Saturday, October 18, 2008

About 6 months ago, my husband started leaving work early, on Wednesdays, picking our son up, after school, and driving him to a local Child and Family Service Center , here in Minneapolis, for a specially-created social skills group for children with Asperger's Syndrome or High Functioning Autism, in his age range. He's 9, right now. Bear in mind this place really is a private business. It's not a public community service center. If it were, I'd be infinitely more understanding of budget cuts and limited resources, etc.

I was able to accompany them several times, but until very recently I usually had to take my daughter to music lessons at that same time.

There were about 12 kids in this group. The kids would meet in a playroom, there at the center, with two teachers. And the parents would meet in a conference room, upstairs, with a moderator provided by the center. The parents could then sort of have a support-group style of meeting, in which they could tell everyone about a recent problem, and everyone else could come up with ideas usually based on their own experience. And sometimes there would be a speaker from a local resource for special needs children to tell everyone what services they offer, there, or do a presentation about something like how to do an IEP.

Then, for the last 15 minutes of the kids' class, the parents would be invited in to the playroom so that we could participate in the activity of the day so we could use it at home.

One example was an exercise in which half the kids lined up on one side of the room, and the other half on the other. Each kid had a partner across from him or her, on the other side of the room. Then the teacher instructed everyone to take one step closer to their partner. Read the other guy's body language. Is he smiling? Scowling? Did he take a step towards you ? Is he backing away? Now take another step. And another. And informed the children specifically which queues tell you you've got too close to the other person and you're making them uncomfortable. For that last bit, we parents were included in the exercise, first with our own child as our across-the-room partner, then with someone else's!

Another involved making a bulls-eye target on a piece of paper, and labelling the center "family" , the next outer ring, close friends and other relatives(name some of them); the next two or three outer rings progressive lesser acquaintances, and finally total strangers. Then they had a discussion about what topics are appropriate to discuss with each level of acquaintance. Who can you talk to about going potty? About what your address is? About a movie you liked? The last bit included parents so we could discuss with our child WHO in our experience belonged in some of those categories.

We were pleased with these therapies and others, and were able to refer to them in our daily lives when we could see our son violating some social rule and had this experience in common with him that we could use as a point of reference!

Well, about 3 months ago this place said that they could no longer offer the parent group, because they were billing our insurances for our children's diagnoses and did not have diagnoses ourselves and any staff person spending time with us could not be billed to us or to insurance. They actually asked if we parents would please all go to a psychologist or psychiatrist and get a diagnosis of "depression" because of the stress of having a child on the autism spectrum, so that they could then bill the group moderator's time to our insurance companies as a psychological service rendered to us as patients !!

Everyone said no.

So they then said , OK, no parent group then. You can just wait in the waiting room while your children are in group. My husband even said that one of them said "don't talk to each other." I wasn't there for that.

Well, the parents pretty much hijacked an empty meeting room while the kids are in group. So they still talk to each other. It's not moderated by anyone and doesn't really have the approval of the center. Mind you several have dropped out, and we're about to become one of them.

Because what else is new is that the parents are NOT invited to the kids' group . Nor are we even greeted by a teacher when our kids come out, to tell us what they did. Our son comes out with a form that says something vague like, He "had a hard time keeping his hands quiet during group today, but he did listen to the others." No mention of what the skill of the day was or what activity they did. And our son doesn't volunteer much information.

Well , since this new set-up, this Wednesday was our son's "conference." I took off work early to show up to it.

We met with a lady who informed us that she doesn't really know our son, but that she did stop in to the classroom, just now, to observe him in group for a few minutes, and that the group was listening to a CD of various household noises, and he appeared to be listening quietly with the others. I asked what the point of that exercise was, but she said she never asked. But that one of his teachers told her he was "making progress" because he used to only be willing to socialize with one specific child in that group every week, but that now he was up to 3. This woman read us this message FROM A YELLOW POST-IT NOTE!

I pointed out to her face that we're excluded from his group, have no idea what they do in there every week now, and this alleged family service center had provided for us a liason who doesn't know our son, doens't know what his class is doing, and that their entire communication to us as parents was limited to a yellow post it note, read to us by someone who doesn't know him.

She explained that other parents had said that the parent participation in group had seemed "disorganized." So they had chosen to eliminate it. What parents don't want to be included in their own child's care? And since when does an accusation of dis-organization get met with just removing the parent from the process, rather than better organize the process? She also said the teachers couldn't meet with the parents after group gets out at 6:30 , because they're only paid until 6:30. I told her you're company just chose to only pay these people until 6:30 , then, and has chosen to understaff .

I told her we, as a family, can not implement or reenforce any of the skills he may or may not be learning in that group now, because we can't see it, they can't tell us what they did, our son doesn't tell us, and that form they write on never says much. She said that if we call ahead and arrange it, a teacher can come out of the class while it's going on, and tell us, but that would temporarily leave only one teacher with all those kids. So I reminded her she's just telling me again how they're understaffed, then.

The best (lowest) part was when she suggested that our son's social skills needs could be met, instead, by joining Boy Scouts. Our son is already in Boy Scouts. He sits apart from them while they're playing, and cries when he can't tie a knot. That's why we're here. And I'm a big, fat hypocrite for allowing him to join, as an atheist who is pro-gay-rights, but that's another story.

I guess we got no reason to go back there, which is a shame, because they used to provide a very useful service. Now I have no idea what they do.