Tiara is 6 years old and getting ready to start 1st grade in her Special Day Class. Luckily, there won’t be any surprises on the first day of school this year unlike her first day of Kindergarten. Before Tiara started elementary school we had an IEP to review exactly what services she would receive and how her day would be structured. Because of her constant seizures, the school district readily agreed to provide her with a one on one aide at all times. They also decided she would receive Occupational Therapy, Speech Therapy and Adaptive P.E. several times per week. They promised me she would be watched closely, and would be in a great class.
Despite all of their assurances, I was very nervous about her first day of kindergarten. As you may or may not know, in our school district, most of the special education classes are on campuses in West Costa Mesa. There is definitely a few sprinkled throughout Newport Beach and East side Costa Mesa, but I have always found it fascinating that they put the special ed kids on the poorer side of town with all the English Learners. The children, the staff and the parents are wonderful at these schools but the whole concept has never sat right with me. I feel like the majority of the white parents with their” perfect children” only want them surrounded by other children of the same make up. But these “perfect kids” are missing the opportunity to learn compassion for others who have challenges whether they be developmentally, socially, or because they are having to learn English for the first time by no fault of their own. This is my personal opinion which you may or may not agree with, but based on conversations with many other people through out the years it appears as if I am not alone in my opinion.
OK, sorry, back to her first day of school. So, because I was so nervous about her first day, I decided it would be best if the teacher and aides in the class knew about Tiara in depth. I decided to put together a mini book to present to them on the first day . It was about 20 pages long with tabbed sections. I included a summary of her medical condition, what her seizures looked like, her past therapy reports from speech and O.T. and described some of her behaviors and tried to explain what certain mumblings meant. She still wasn’t talking at this time, but was very expressive and each expression meant something different.
Unlike most of the other special education children, I drove Tiara to school each day, instead of her taking the bus. The first day arrives and I am super nervous and am not sure what to expect but am telling myself to be positive. So, in we walked to her class and were immediately greeted by the teachers aide. She seemed very nice and I gave her one of the books and she took Tiara’s hand and said “Ok , bye, we will see you at the end of the day.” “Wait, where is her one on one aide? And don’t you need to ask me a few questions? And don’t you want her diapers and wipes and sippy cup? And shouldn’t I wait until she gets acclimated? And don’t you want to read the information I just provided you with?”
“NO, YOU CAN GO, THIS WHAT WE DO, WE CAN HANDLE IT.” she said. Oh, no, I could tell this wasn’t going as planned.
In walks the teacher and I am practically in tears and I explain I need to meet the one on one aide and brief her on Tiara before I will leave. “Well, she hasn’t arrived yet. I think she will be here at 9:00 and we will just watch Tiara until she arrives,” she said. Oh, no, not gonna happen. At this point, she shows Tiara over to the so called play area. I was completely horrified. The carpet was filthy and I am not exaggerating. They toys were basically non existent and everything was shoved into this little space that could not accommodate more than one child at a time and there was already a child playing there. And the topper, the window sill was filled with a stream of live ants, that were finding their way down to the play kitchen area. I was speechless. Is this a joke? This is where you want my child who is and out of the hospital, and has a suppressed immune system to spend her day? You have got to be kidding me! I took a few deep breaths and then said ” I need to go speak with the principal immediately” “Oh, OK, we will watch her.” “Don’t let her near those ants and please watch her closely.” I replied.
So off I stormed to the front office. The principal agreed to meet with me and I went through what had just occurred in the room and the complete filth I had witnessed. She couldn’t explain away the state of the room but said the carpet had been changed within the last few years. That was impossible. She then said would talk to the teacher and maintenance and make sure the room would be cleaned up better for the second day. She also said the aide would be arriving soon but would always come 45 minutes after the start of school because of some funding rule. Oh, OK well, then I will stay with her until the aide shows up everyday.
I was physically sick to my stomach at this point. As I walked back to the classroom I peeked into other rooms and looked at the carpet. None of them had the same blue carpet as in Tiara’s Special Education class, they all had newer carpet. Figures, why bother putting new carpet in for the disabled kids? Well, once I got back to class, the teacher and aides had decided I was a threat and a crazy parent. They didn’t realize I wasn’t attacking them personally but just the situation. Once the aide arrived and I briefed her on Tiara, I decided I still couldn’t leave and Tiara was so over the place, so we just left together. I told the teacher and the principal that we would come back tomorrow and hopefully the room would be in a better state. I was so upset, once we got into the car, I started sobbing and sobbing. I felt so defeated. How could my sweet angel spend the day in that disgusting room?
Day two, in we walk and the room is no better. The ants are dead but not cleaned up and the furniture is still arranged the same way. Out we walk, straight to the principals office. “Tiara will not attend this school or any school until that room is cleaned and the set up is changed!” That afternoon, she called me and said we would be having a meeting on Thursday to discuss the situation. “Ok, great, Tiara will remain at home with me until the situation is rectified.”
Thursday rolls around and I walk into the meeting by myself only to be greeted by 12 district employees, with bad attitudes and bad looks on their faces. Oh crap, I guess this is war and I didn’t bring any weapons except my mouth. The speech teacher who I hadn’t even met before was leading the meeting and clearly hated me with a passion. (We became friends later.) They started attacking me saying I was overreacting, over protective, too demanding, blah, blah, blah. Well, the nurse who had known Tiara since she was 3, completely sided with me and shut them all down. She explained that I was not overprotective and the room was a health hazard to Tiara. She also agreed that the carpet was not acceptable for any child to be sitting, playing or resting on. Huh, take that people!
After the heated meeting it was agreed the layout of the room would be changed to accommodate more children in the play area in a safer way, the head of maintenance for the district would come and assess the carpet within days and decide whether it should be replaced, Tiara’s aide would arrive earlier everyday so she would always have a staff member by her at all times, all the old toys would be cleaned and disinfected and new toys would be added to the room. Yeah…..
Within a week, the carpet was replaced, apparently that room had been overlooked when the rest of the school got new carpet a few years back. Hum, how odd! Everything else we agreed upon was completed and the teacher then started to realize I was a force to be reckoned with for the future as my intentions were to help not hurt the classroom situation. Week 2, Tiara started kindergarten.