Love Makes Families

Love Makes Families
A family of 7 due to the blessing of adoption!

Sunday, July 17, 2011

Kaitlyn and her label as "special needs"

My oldest daughter is 6. A few years when she was only 2 and a half years old, she was diagnosed with several "problems." We were told that due to her age some of her diagnosis could/would change. They told us she had PDD (pervasive developmental disorder) which was most likely aspergers, social anxiety disorder, OCD (obsessive compulsive disorder), and a few other things. That was a lot to be told that my 2 year old had. These problems were in addition to her GERD, RSL, Sleep Apnea, and a few other medical problems. As a first time mom, I was overwhelmed. Thoughts would go through my mind like.... What did I do to deserve this? Why me? Why her? Will this ever end? and a million other things.

They put her on a few different medications, but the one that finally seemed to work was called trazadone. It helped almost all of her problems. It is an adult medication that was originally created to treat anxiety and depression, but was later made primarily as a sleep medication. So it helped her to get about 10 hours of sleep a night compared to the 3-6 hours she had been getting. It helped her to be more "calm" during the day. This may have been due to the medicine, or could have been because she was finally well rested. Either way, I was starting to feel like we would make it. This was a new yet much welcome feeling.

After about a year, we decided to stop the medication because they do not like to use it long term. We were still doing pretty good. She had "learned" how to sleep. Things were working out great for a while. When she was 4 and ready to enter into head start (she qualified based on medical needs). This presented us with a whole new problem. Well several actually. First, she did not like meeting new people especially adults. Second, she was on a schedule, but that schedule meant she went to bed at midnight and woke up at 10 or 11. This was the schedule that worked for her. Also she had just recently had a triple surgery to help with her breathing problems and sleeping which set us back quite a bit. (not to mention that we had a new baby too). 
Basically the main problem is... She HATES change, and change was all that she was dealing with for several months. It took everything we had to get her "prepared" for school. Preparing a child with "special needs" is NOT the same as preparing a "normal" child. I had to have a meeting with the teachers obtain a copy of the exact schedule. Tell her in detail what would take place....Let me be the first to tell you that if they made a change to the routine, Kaitlyn would go crazy. She wouldn't have a problem at school, but when she would get home, she would scream cry or have nightmares. Life was hard! I remember one specific time when they had an "unscheduled" (meaning they didn't tell me) Fire Drill. She had night terrors for months. She would wake up (well not actually wake up, but act as though she was awake while still sleeping) and start screaming at the top of her lungs. She would throw anything and everything she could get her hands on. It was horrible. All of this over a "simple" fire drill. To this very day she cannot watch any movies with fires (before this unexpected fire drill, this was not a problem).
We made it half way though Head Start, but then we had to move. My mom was having health issues, so we needed wanted to move her in with us. We decided to start looking for a house in November. We thought it would take us a while to find a house in our price range that met our needs, but we were wrong. We found a house very quickly and moved the week after Christmas. This meant another change. Luckily Kaitlyn did very well with this change, and we were all very thankful. I think having Poppy and Grandma around all the time helped ease the transition.
Then the next change came about.... Kindergarten was getting ready to start. I couldn't not tell her because (trust me) that would have been much worse. We started working on her schedule. Practicing waking up, getting ready, and even taking her by the school, so she would be very prepared. About a month before school started she was not doing well at all. We took her into her doctor, and they wanted to try her on prozac. We tried it, but within about 2 weeks time she was about 5 times worse than she had been. We stopped the medication, and we just waited to see how she would do. The first day of school came. She was sooooo excited. Her grandparents from Vegas came and EVERYONE took her to her first day (at her request) Both sets of grandparents, mom, dad and her 2 sisters all in tow, and she loved it. She came home her very first day, and she told me just how much she LOVED school. This excitement continued each and everyday, and each and everyday I said a great big Thank You to our Lord. I even volunteered at her school 2 days a week to make sure I had a good relationship with her teacher and the staff. I wanted school to be as natural and amazing as possible.
Then another change occurred. Kaitlyn's grandma.... the one that lives with us... fell and got hurt. She brooke her ankle in 5-6 places. She had to have surgery to put in a steel plate which left her in a wheelchair. Well our home was definitely not wheelchair accessible, so we began searching for houses that we could make work. The Lord let us to Layton. We were happy to be moving closer to Kevin's brother, my mom's whole family, and Kevin's grandparents. We were sad to leave, but we knew this is what was best for our family. That was 7 and a half months ago, and Kaitlyn has still not recovered. When we first moved up here (the week after Christmas again) she was happy and excited to be close to her cousins.
Then school started. She came home each and everyday from school sad and distant. I would ask her how her day went. She would tell me about new friends she had met, and that she liked playing with them. She was starting to act out more and more, and I didn't know what to do. A week or 2 into school she came home and asked me.... "Mom, am I not smart enough for you?" I said of course you are honey why? She said "Because you put me back in preschool." I finally knew what was wrong. She is very intelligent and was succeeding in her previous class because her teacher was AMAZING. She had a very "advanced" curriculum. Well that was not the case with the new teacher according to Kaitlyn. She told me that they watched cartoons everyday in class and never did any work. She told me that they either played or watched tv. I thought this must be a mistake, so I decided to go in to her class and help out. I was secretly watching to see how the teacher taught.... Well I am pretty sure that I blinked at the wrong time and completely missed the teaching part of the day. She did read them stories and have the fill out copy her answers onto a worksheet (the only worksheet of the week.... yes they only do 1 every week). So we got into the class, and the put away their coats and backpacks. She allows them 15 minutes to do this. Then they sit down and she reads them a story for another 15 minutes. Then they make a puppet while listening to music for about 20 minutes or so. Then they sit down and watch a 20-30 minute cartoon (no it was not an educational one.... they were watching Dumbo)Then she takes them to music, PE, dance, library or computers for 20 minutes. Then she returns to her classroom since they have separate teachers for each of those "classes". That teacher leads the students straight out to recess for 15-20 minutes. Then the class comes back in and sits on the floor. She reads them a story while they eat their snack. Then she did a few "activities" with them (about 5 minutes worth). The kids went back to their desks to fill out a worksheet. She literally put it up on the projector and had them copy her answers.... She never explained to them how she got the answers. Then they had play time. They actually have a tree house in their classroom. Where was that when I was a kid?!? All in all I thought they day lacked much teaching. While all of this was going on, I was working with the kids on 6 letters to spell words such as cat, sat...etc. Before I would begin, I would ask the kids to tell me the name of each letter and the sound it makes. Over 1/3 of the class couldn't even recognize the letter a... let alone tell me the sound it makes. I was saddened by this :(
I made sure not to tell Kaitlyn how I felt about it. I continued to encourage her to do her best... I knew parent teacher conferences were coming up soon, and I would have a chance to talk to her teacher. A few days later, she comes home and says to me.... "Mom, I know why they call them a teacher. Because they teach us. What are we supposed to call them when they don't teach us?" I was floored. Was this how she felt. I attempted to keep the shocked look off my face while I said. You still have to call them a teacher honey. Well parent teacher conferences came after we had been there about 6 weeks, and I was excited to get to know her teacher better. The meeting didn't go so well. She gave Kaitlyn below average on several things that she was "above average" on in her last class. When I questioned where the papers were that they were completing in class she looked at Kaitlyn with an accusing look and said "What have you been doing with your papers?" Kaitlyn looked afraid. I noticed that since we had entered the classroom she was not looking up, but she was looking down the entire time. She was intimidated.... honestly I can't come up with the right word. I showed the teacher the 5 papers that I had seen come home in Kait's bag and she sighed. Oh there they are... That's all of them. I questioned her... In 6 weeks time you have only done 5 worksheets?? The teacher responds. Yes I don't believe in wasting paper. Hmmmm I found myself pondering this. At the end of the "meeting" she had a "gift" for the kids. She looked at Kaitlyn and spoke to her in a tone I have only heard people use before with very young babies. You know the one... that sing song baby voice. Which drink do you want? I have an orange one with bubbles, a root beer which is a pop with bubbles or a red drink that doesn't have any bubbles at all. I wanted to look at her and say she knows what orange soda, root beer, and fruit punch are. Afterall she is 6 years old not 6 months old, but I held my tongue (something I am not normally very good at).
I was concerned because I felt as though none of my concerns were addresses. I told her that Kaitlyn felt as though she was not learning because she is very intelligent. I asked the teacher if there was anything we could do to help her "not lose interest in learning." She told me that she didn't have time to teach the kids anything more than what she was teaching them. She told me any further education would have to take place at home. This had me thinking. Maybe this school offers IEPs. Her previous school offered individual education programs for kids who were either ahead of the "normal" pace or behind it. So, I decided to ask the principal if they had these programs. He explained to me that there had been budget cuts. Their school had decided to cut the special education program before cutting out music, PE, computers, etc. I was shocked. When I told him that I was concerned he told me not to be. He said and I quote "School is a social experiment not an educational one." I think I almost passed out. A week later, I had an appointment (at the teachers request) with the teacher and the principal. They agreed that I could do more by providing Kaitlyn with extra homework and extra worksheets that the teacher could give her when she looked bored. This helped a little, but Kaitlyn had lost almost 3 years worth of progress in just a few short months.
How did this happen? What could I have done differently?? I have no clue. Our insurance will not cover counseling or anything associated with mental health for a minor, so that means 200 dollars a visit for counseling. We can't afford the 800 a month that would cost since they must see young children weekly. I feel lost. She screams all night again. She is back to sleeping as little as 3 hours a night. She is getting violent again. She throws tantrums like you have never seen before. I am her mother. I should be able to help her, but how? She is my daughter, and I am lost. I do not know what is best for her. I have looked into every resource imaginable. Finally, my Bishop is helping me. I get to call and get an appointment tomorrow. Will it help? Are medications the right answer? I have so many questions. I feel like I have failed her. I sure hope I get help soon. In the meantime.... Please pray..... pray for my sweet Kaitlyn. Pray that she will get sleep, and not feel so anxious all the time. Pray that I will know how to help her!!!


1 comment:

  1. Oh, I can't believe all you and Kaitlyn have been through. And I knew some of this before, but I'm still in shock over her teacher last year!

    We'll keep praying for you all!