Tuesday, June 19, 2012

Starting School Followup

One of the first things you realize when you have a child with Down syndrome, is that the Ds isn't a big deal.  Your child will laugh, cry, sleep, love, learn, grow, and do everything else than all children do.  What is the big deal about having a child with Ds?  Other people and their prejudices are the real issue.  They are the so-called friends and family that don't realize that a person with Ds is a person and deserves to be treated like any other person.  They are the people who use the 'r' word and refuse to put themselves in the shoes of those they are maligning and put a stop to that hate language claiming that they can use any word they wish and that other people are being just too sensitive and all those same arguments you would hear a member of the KKK use to defend their use of the 'n' word. They are the people in the school system that believe that your child doesn't deserve to learn and be educated with other children.

I've said that I was going to post about the bear cub starting school, but I kept putting it off.  Her actual month-and-a-half of school was great and helped her a lot, but the getting to that point was enormously stressful and I thought that writing about it would bring it all back to mind so I've been avoiding it a little.  I had written about the somewhat painful meetings with the school prior to the evaluation here.

The bear cub with her daddy at the time of her evaluation waiting to schedule her first eye surgery.

The evaluation was interesting.  We went in to the district office and they again didn't have any notice that I was going to be there, but they gave me a name tag anyway and called the therapists who apparently did know I was coming.  The therapist came and I was holding the bear cub's hand so that she would not dawdle or run off.  They asked me if she could walk unassisted.  I have a friend who said she would have been offended already, but I understand that this is a reasonable question since a lot of our kids aren't walking well at three and they also deal with a lot of disabilities and not just Ds.  I let go of our hand and the bear cub kept the speed and walked all the way down the long hall without getting distracted.  When we entered the testing room, they immediately went to work on her.  One of the therapists started testing her while the speech therapist asked me questions about her abilities.  The bear surprised me immensely by showing off.  She showed that she knew things that we hadn't even worked on like opposites and matching.  She stacked the blocks high like she did it all the time (at home she would stack maybe three before pushing them down).  She also used a lot of signs like asking them to dance and then getting up to do so.  She also didn't have an accident and went potty on the little one that they had there (at that point she was just getting to the point of being fairly consistent and I was a little worried about this).  She also came and hugged me around the neck from behind when moving around.  After about an hour of working with them, she was done.  She signed 'all done', hid her head behind a book case, and wouldn't look the therapists in the eyes.  The therapist finished with the questions and we left and I actually felt pretty pleased with how it went.

I tried to contact them two weeks later and the receptionist would not even considering putting me through and told me that they would contact me.  I verified that they had my cell number and that they would call me there.  The next day they apparently called the message number (Q's mostly unused cell number) that I specifically told them not to use and left a message telling me that the eval was done and that they would email it to me.  I didn't listen to this message until later and I never received an email from them.  After another week I called our home school and the phones were all down.  Later that same day, I got a phone call from the speech therapist and special needs coordinator for our home school, Valerie (possibly not her actual name).  Valerie told me that she was calling to remind me of the IEP meeting that I supposedly agreed to the next week.  I explained that I knew nothing of this meeting and that I hadn't even received the evaluation report.  She told me that she would call me back.  She called me back in less than an hour and told me that she had a copy of the evaluation report and would make me one and she could email it to me or I could pick it up at the school.  I told her that I would be more than happy to pick it up and that I was taking the girls to the park and would do so on the way.  She told me to call her in the parking lot and that she would bring it to me so that I wouldn't have to unload the girls.  This amazing woman came to the parking lot and asked to meet my girls and was so nice about it all.  She even asked about having the nerdlet diagnosed (she may have shown a few spectrum type symptoms to her when Valerie tried to talk to her).

The bear cub and her sisters playing around the time of this conversation.

I read through the review while the girls played at the park.  The report was full of errors.  It referred to the bear cub by the name Julia at one point (that isn't her name).  At other points it referred to her as a he.  Throughout the entire report, it was filled with descriptions of a child or children that were clearly not my bear cub.  For example, it said that she was antisocial, violent, prone to fits, and didn't sleep well, none of which is true for the bear cub.  I showed the report to one of  the bear cub's therapists and she stated that it didn't look like any of it was right and joked that for once, it would be the school system that looked like idiots instead of the parents.  I considered using it as leverage for getting her what she needed since they couldn't argue on the basis of a completely untrue report, but when Valerie called me again to make sure that everything was set and asked if I needed anything else, I decided to mention it.  She said she would call the district and let them know and have the report changed.  The district speech therapist called me to ask me what the errors I found were, and I was busy and not feeling particularly inclined to help her, I mentioned a few of the errors and told her that I didn't have it in front of me but that the whole thing needed revision.  She stated that she would do so and email it to me, but again I received nothing.  I actually received the revised document from the bear cub's teacher the day before the meeting and most everything had been changed and was mostly correct.

The IEP meeting went well and I was fairly please with the goals and how they were to be addressed, though with only a short time before school let out, we wouldn't see any measurement of these goals.  Also, the teacher of her class that I liked retired when school let out so next year might be a whole different ball game. I did get a dirty look from my home school's principal when I pulled out the recorder, but I told her that I was under the impression that recording these meetings was standard and they scrambled to find the 8-track recorder so that they could record the meeting also (I exaggerate a little, but the cassette recorder they used was likely the first version and was for sale simultaneously with the 8 track recorders I think).  I was talked out of the school I wanted the bear cub to go to, but mostly because Michelle (actual name), the coordinator for that school, seemed completely uninterested in having anything to do with the bear cub and practically scoffed at my concern to keep her potty trained and not back in diapers.

The bear cub's first school bus ride.

School went well for her.  She brought some new pathogen home from school to enjoy and share with her sister each week and pretty consistently missed Tuesdays due to either diarrhea or fever.  She also seemed to have an accident each week at school.  When I confronted the teachers about this, they explained that because she needed a special potty that it had to be kept in the handicapped bathroom and about once a week it was occupied and they had to wait resulting in an accident.  Since this did not result in more accidents at home, I didn't really worry about it.  The only other big thing that I didn't care for was that they could only have a backwards facing car seat one way because the school bus used going the other way didn't have the seats far enough apart to accommodate the backwards facing seat.  I did like that they had a dedicated assistant (the lady in the picture above) that strapped the bear cub into the car seat and sat with her each day.  

I have the option of having therapy services over the summer through our insurance.  The school won't provide summer school or services until the bear cub shows significant lapsing so she's not getting anything through them this summer.  I've decided to take the summer off in regards to therapy.  I have had appointments two or more times a week pretty much since she was born and I've decided to give all of us a break.  I'm a little worried about the stress of school when it resumes in the fall, but I'm trying not to dwell on it for the time being.
The bear cub a few days ago.

1 comment:

  1. Wow, they have *seriously* put you through the ringer!! I'm so sorry they've made this such an awkward and disappointing experience on the whole. But your little girlie is sooooooo adorable, sure to melt the heart of even the most uptight administrator or teacher. Enjoy your summer, and start off the new school year as a whole new experience. :-)