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.

Starting School

In the process of just trying to get an appointment to get the bear cub evaluated for school, I learned a lot about how hard dealing with public school and ensuring that she get the best education possible was going to be.

First they gave me a hard time about showing up in the first place. They left me a message saying that I could not have an appointment because she was too young, even though I knew of more than one parent who was scheduled to be there that had a child younger than the bear cub. The lady that left this message did so after their operating hours and when I called immediately back, the receptionist gave me a hard time about calling after their operating hours and questioning the message in general. I still have this message on my phone.

Then when I did show up, although they had my name at the front desk to get a visitor's pass, I was not on any of their other paperwork. They were so very generous in allowing me to sit in on their information meeting, which I recorded. It was given by a speech therapist and gave me a lot of positive feelings about what to expect, until the meeting was over and they directed me to another room where the other personnel told me that what I heard wasn't true and that I must have misunderstood what was said. I basically was told I had two options: PPSC in a non-inclusive setting, which was 3 hours a day five days a week or Head Start which was inclusive, but in which I would get no therapy, which was all day five days a week. I was also told that putting my 20 pound little girl in a five point harnessed car seat was not going to be possible. The lady who knew about the Head Start Program basically told us this and then ran out saying that she was double booked and had to go to another school.

In addition to this, I had a wonderful conversation with the lady that scheduled my evaluation. She asked me what my concerns were. I was a little thrown by the question, thought a bit, and answered that I was concerned that my bear cub would not get the education she deserved which would help her live up to her potential so that she could be independent and have a good and happy life. The lady rolled her eyes at this and said she meant does she have any medical issues that need to be addressed. I explained that she had an issue with her eyes that would be addressed with surgery but that would be taken care of before she entered school most likely and that there weren't any other medical issues that I could think of. She rolled her eyes again, sighed loudly, and asked if she had Down syndrome. I said yes. She told me I should try to just answer the questions asked. I explained that I had answered exactly the question asked and that I did not think that her having Ds was an issue and I didn't appreciate the way the question was asked or the implication that there was something inherently wrong with her. Needless to say or write, I was not left with the impression that the public school is on my daughter's side or looking out for her best interests.

After some very fortunate chance conversations with a first grade teacher that works in our school district and a therapist from Brighton, I learned that these things were not true and that I did have more options. Both encouraged me to look into Brighton Center and also to acquire an advocate. I've signed up for some parent advocate training, am looking into finding an advocate for any future meetings, and called to tour Brighton Center.

Today I was scheduled to tour Brighton Center with the bear cub and look to place her on the waiting list for the transition class, a class geared to children that had not turned three and were learning the skills to make them successful in the classroom prior to entering preschool. When the bear cub and I showed up, she decided to show off. She was very friendly and waved to each staff member that she was introduced to. I was shown each room as we passed them and before going to the transition classroom, we were shown the pre-K 1 classroom full of 3 to 4 year olds. Once the door was opened, the bear cub immediately walked in and went to sit at the table and chairs were the children were making ornaments. The teachers told the class to say hi to her and they did and the bear cub said 'hello' back. This is something that we did not know that she would do. Before now, she has not said 'hello'. The children finished their ornaments which consisted of pushing cotton balls into a clear plastic bottle and then having the contents scented with some sort of oil. The bear cub resisted the teacher doing this hand over hand, but she was willing to choose to take the cotton ball out of my hand to do it herself.

After the craft, the children went to sit at circle time. The bear cub first decided to try out some of the other chairs at the table, but then very shortly went to join the circle trying to pull off the bib that I had put on her as she has been drooling lately. After I helped her get the bib off, she bounded into the middle of the circle and started dancing. She looked around and saw that none of the other kids was dancing and singing and then sat in the circle and started clapping and waving her hands along with them. They had a song where they were signing the alphabet and she was moving her fingers the same way that she does at home when we do the alphabet song (she can't quite sign any of the letters but she does try). While she was doing this, the staff that was giving me the tour told me that she seemed to fit with this group perfectly and that they would put her on the waiting list for Pre-K 1 instead of the transition class. I was so thrilled to hear this and agreed that I thought that was best.

After circle time, the children were getting their jackets on to go outside. The bear cub wanted to line up with them, but as I had left her jacket at the front of the building I figured it was time to leave them. I told the bear cub to say good-bye and she waved and signed 'Thank you'. The kids all said good-bye to the bear cub and one little girl came and told her good-bye up close and they hugged each other. The bear cub resisted leaving and was clearly unhappy to go and was signing play more on the way out.

The therapist told me that the big obstacle that the school would put in my path to having the bear cub have PPCD at Brighton Center was that they would not have a spot for her and I'm hoping that the bear cub will move to having a spot at about the same time that she turns three when she would normally start preschool(since we can't really afford to pay for the preschool for very long). I'm also attending my first parent advocacy training session tomorrow.

Wish the bear cub and me luck!

Advocates for Ds

Today I have the first transition meeting for the bear cub to enter preschool. She is 31 months and the school will pick her up when she turns 3. I was trying to be optimistic about it since I do know people that it has gone well for, but I'm already having problems with the administration in that I received a phone call saying that she was too young, even though I know that children younger than her will be at that meeting today. That was cleared up. (I think. We'll find out when I get there.) I also had a few issues with their pre-registration form, which I think is really poorly designed and it doesn't have any explanations to guide you. Apparently, they don't believe that ASL is a language, which irritates me, and while the state took the 'r' word out of their vocabulary and abbreviations legally, this hasn't yet made it to the schools (or at least their forms).

Anyway, hopefully it will go smoothly. I bought a fancy digital recorder and made sure that I know how it works. I'll make sure to have a snack on my way in so that I don't turn into a grouchy mama bear when I need to be pleasant. I also am going to go with a friend to hers for support so I'll be getting a small preview of what to expect for mine which is shortly after.

So today I'm especially grateful for all the advocates that came before me: Those parents that fought so hard to not put their kids with Ds in institutions; The mothers that fought for their sons and daughters to be included in the regular schools, in regular classes, and receive the same instruction; The fathers who fought for the laws to change and give our kids the legal equality they deserve; The people with Ds that worked so hard to show that they are more alike than different and that they can achieve the same things that their peers without Ds can; and All those who know and love someone with Ds that have fought for those loved ones and given them and their families the support they needed to accomplish these feats. I'm am not unaware of how hard a struggle it was and while it isn't over I am so very grateful to have their shoulders to stand upon. I know that because of all of these people, my bear cub is going to have a real chance of meeting her potential and knock the socks off of those that think that people with Ds can only be busboys and dishwashers.