It seems that we are always fighting for what Emma needs! Once she was diagnosed with Autisim my husband and I began the search for the right professionals to have on our team. We wanted to make sure Emma was getting what she needed from us and from her school. so, we got Emma in with a great Psycholgist and Psyciritrist.
We also contacted her school to set up a meeting to request testing to change her disbaility on her IEP to Autisim...and so the fight begins! At our first meeting the school pushed back and did not want to grant Emma testing for OT (occupational therapy). They tried to tell me they had to wait until her eligibility to discuss getting an OT assessment. I had to remind them that Emma already had an IEP so that they could do the OT assessement. See, OT is a big issue for Emma. She has sensory and fine motor issues. I knew as a teacher myself how important these areas are for her. After emphasizing out point, we did get what we wanted, but we had to fight for it. It just stinks that we have to fight so hard to get our kids what they need!
Then we had to move. We were renting a house and our landlord decided to change things up on us. School started. Emma had already began school and was doing great before we got this blow. So here we are just getting settled and Emma had to up and change schools. Emma loved her class, her school, and teacher. We tried to get the school to let her stay, but no county policy was that she had to go to her home school. See Emma had Autisim, but the school did not recoginze it yet. This switch was hard for Emma, we had to up root everything in her life! She acted out. She did not like her new teacher....we did not like her new teacher. The fight intensified!
Before Emma even moved schools the principal said to my husband that we would have to change Emma's IEP because it did not match what they had to the school. That was the first red flag. The principal said something to that effect several times. I kept on resuring my husband that not, they cannot do that and the school must do as the IEP says or face legal issues. Then there was the teacher. A sweet older lady. I went to open house and mentioned that Emma was already reading and needed to be pushed. I was blown off. She didn't want to give Emma more, she wanted to focus on how Emma did not want to do the work with the class. At the first conference, again the teacher was not listening to what Emma needed. Emma showed her teacher that she knew a lot on the PALs test. Her teacher said that Emma must have seen it before since she knew the reading do well. I again said, no Emma is reading. She taught herself to read between the ages of 3 and 4. We would get note how about Emma not listening in class and not participating. All the while brining prereading, beginning letter sound work home. Her class was learning the letters and the sounds they made. Emma had to sit in class and do work that was years lower than her ability.
But what proof did I have? They didn't believe what I said. We had to prove the her teacher and school that Emma had this hidden talent and ability that they could not see!!
Thursday, February 16, 2012
Wednesday, February 1, 2012
Emma's Journey to Autism
Emma was born a perfectly healthy and happy baby. She was a very easy baby and loved to be independent. She like cuddles, but to an extent. She developed normally, until we got to speech. She would babble, but the words just did not come. She had many ear infections from 6mo on and she had fluid in her ears all the time. We though, maybe she could not hear us well enough due to the fluid. So at just under a year old, she got tubes. This got rid of the fluid and the ear infections. But still the speech never really came.
I had gone back to school to become a Special Education Teacher and was working on a Master's Degree. We kept of talking about the signs of various disabilities. I had this funny feeling that my baby needed something more than I could do. When she was just under two, I started asking questions. I knew something was up. She should be talking already. The final push was when I contacted my professor and asked her point blank if I should wait a little bit longer, or seek assessment. I called the local school system the next day to get her assessed.
The assessment took a while to organize. They found some real strenghs in her nonverbal abilities and problem solving. The girl could do puzzles that where too old for her. She loved to play and manipulate things. But they found her speech and connection to people around her to be delayed. She got the label of Speech Delay. No one said anything about Autism, although the red flag questions were asked. Emma just did not hit enough flags yet. So at 2 and a half she began speech.
Emma was head strong and tried everything to not speak. She has a few words at 2 and a half and her vocabulary was growing. Her first word was Tiger and I was Home. Speech therapy made her have to talk within her play. She really enjoyed it.
After her third birthday we had to get her assessed again to transition from Early Intervention to the public school system. The testing was hard to watch. Within it there were things that she knew but could not answer due to her not understanding what was asked of her. She had become a bright little girl who knew most of the pre-K skills because she taught herself. She was given the labels of Developmental Delay and Speech Delay. Labels don't mean too much, but she was getting the helped she needed. She went to public school for the preschool program half a day the September after she turned 3.
At 3 and a half we noticed that she no long lacked words. She had many many words.She had gone from severely behind to slightly advanced in her vocabulary. We did notice that her pragmatic speech and her connection to others was still impaired. She was beginning to read too. She got lost in books. She loved to learn and had this amazing memory! Her preschool teacher talked about how bright she was and they had to come up with a more difficult assessment because she knew all the things on the normal assessment for preschool.
At 4 she was part of a Head Start program and she when to school all day. We were excited to get her used to the structure of school. We had some trouble in daycare during this time. She actually got kicked out one daycare. This particular daycare did not have enough structure for Emma and were not able to follow through on the things that her public school preschool teacher and speech pathologist suggested. So they just kicked her out.
Emma did wonderfully at Head Start. She continued to know all the topics they talked about and would often help teach her class. She just seemed to know everything before it was taught. She was reading on her own now. She loved reading. But she still struggled with social rules and expectations. She wanted to follow her own agenda. We had flags, but was it enough. She would be starting kindergarten the next fall. What did we have to do to make sure Emma got what she needed.
My husband and I were watching the show Parenthood and they were going through something similar. It was after Max was diagnosed that my husband turned to me and asked, "Could Emma be Autistic?". I simply said yes, she could be. The next day I asked my school diagnostician and psychologist where to go for the best and most objective assessment. I needed to know if there was more than just a delay to help Emma. I did not want to take her somewhere to just get a label and be done with it. They suggested that I take her to this clinic at Virginia Treatment Center for Children at MCV/VCU. Emma was administered the ADOS (Autism Diagnostic Observation Schedule and the Autism Diagnostic Interview) along with other measures. A team of professionals from the Education and Medical feilds came together and looked at everything. My husband and I went into this testing thinking's yes, she might have Aspergers. What we left with was a child who now had the label of High Functioning Autism. Everything changed that day. Things looks clearer in some ways, but foggy in others. We now had a name for why Emma was like she was. Now we just had to get her watch she needed!!
So our journey to get her to tools she needed began!
I had gone back to school to become a Special Education Teacher and was working on a Master's Degree. We kept of talking about the signs of various disabilities. I had this funny feeling that my baby needed something more than I could do. When she was just under two, I started asking questions. I knew something was up. She should be talking already. The final push was when I contacted my professor and asked her point blank if I should wait a little bit longer, or seek assessment. I called the local school system the next day to get her assessed.
The assessment took a while to organize. They found some real strenghs in her nonverbal abilities and problem solving. The girl could do puzzles that where too old for her. She loved to play and manipulate things. But they found her speech and connection to people around her to be delayed. She got the label of Speech Delay. No one said anything about Autism, although the red flag questions were asked. Emma just did not hit enough flags yet. So at 2 and a half she began speech.
Emma was head strong and tried everything to not speak. She has a few words at 2 and a half and her vocabulary was growing. Her first word was Tiger and I was Home. Speech therapy made her have to talk within her play. She really enjoyed it.
After her third birthday we had to get her assessed again to transition from Early Intervention to the public school system. The testing was hard to watch. Within it there were things that she knew but could not answer due to her not understanding what was asked of her. She had become a bright little girl who knew most of the pre-K skills because she taught herself. She was given the labels of Developmental Delay and Speech Delay. Labels don't mean too much, but she was getting the helped she needed. She went to public school for the preschool program half a day the September after she turned 3.
At 3 and a half we noticed that she no long lacked words. She had many many words.She had gone from severely behind to slightly advanced in her vocabulary. We did notice that her pragmatic speech and her connection to others was still impaired. She was beginning to read too. She got lost in books. She loved to learn and had this amazing memory! Her preschool teacher talked about how bright she was and they had to come up with a more difficult assessment because she knew all the things on the normal assessment for preschool.
At 4 she was part of a Head Start program and she when to school all day. We were excited to get her used to the structure of school. We had some trouble in daycare during this time. She actually got kicked out one daycare. This particular daycare did not have enough structure for Emma and were not able to follow through on the things that her public school preschool teacher and speech pathologist suggested. So they just kicked her out.
Emma did wonderfully at Head Start. She continued to know all the topics they talked about and would often help teach her class. She just seemed to know everything before it was taught. She was reading on her own now. She loved reading. But she still struggled with social rules and expectations. She wanted to follow her own agenda. We had flags, but was it enough. She would be starting kindergarten the next fall. What did we have to do to make sure Emma got what she needed.
My husband and I were watching the show Parenthood and they were going through something similar. It was after Max was diagnosed that my husband turned to me and asked, "Could Emma be Autistic?". I simply said yes, she could be. The next day I asked my school diagnostician and psychologist where to go for the best and most objective assessment. I needed to know if there was more than just a delay to help Emma. I did not want to take her somewhere to just get a label and be done with it. They suggested that I take her to this clinic at Virginia Treatment Center for Children at MCV/VCU. Emma was administered the ADOS (Autism Diagnostic Observation Schedule and the Autism Diagnostic Interview) along with other measures. A team of professionals from the Education and Medical feilds came together and looked at everything. My husband and I went into this testing thinking's yes, she might have Aspergers. What we left with was a child who now had the label of High Functioning Autism. Everything changed that day. Things looks clearer in some ways, but foggy in others. We now had a name for why Emma was like she was. Now we just had to get her watch she needed!!
So our journey to get her to tools she needed began!
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