The Road Less Traveled

Once Emma was in kindergarten and privately had the Autism label, the school had to go trough and determine if she meet their criteria for Autism. So we had to have her tested through school. I was nervously waiting to see what they would find for her ability and performance scores. My husband and I could see pings of brilliance through her unwillingness to go with the flow. I knew she was bright, but was she gifted. My husband and I often ask ourselves this question. We were taking a wait and see approach in the beginning. It can be so hard to qualify what is gifted in the younger children. Gifted kids don’t develop their skills and talents evenly. Well neither do Special Needs kids. So it was hard to determine if what we were seeing was a really bright child or a gifted one. So we waited. Then the testing came back….

Emma ability scores were high…very high (Ms. 99.6 percentile with her strength in nonverbal…duh Autistic). She has this enormous ability to learn. Her reading scores again were very high for a kindergartner. In math she was average (fair enough she had never been taught any math directly…she probably did not know what they were asking her to do). The light bulb began to flicker. What did we need to do to nurture her ability to ensure she does not waist too much time in school learning nothing??

In December of 2010, we had her eligibility meeting and her IEP meeting. Everyone kept talking about how bright Emma was and how she needed to be challenged. One of the county representatives mentioned how she would be best grouped with the gifted cluster kids. Stating that she would probably fit in better with them and they would have more in common with each other than differences. Her being gifted was brought up, but everyone said “I don’t know…maybe”. I brought up GT testing. The counselor quickly chimed in and said 'we really don’t label kids younger than 3^rd grade gifted'. They don’t even bring them up for testing (not what the k-12 gifted policy in the county said…note to self research and provide evidence in future)!!!  In the end she was found to be Autistic through the school too. We wrote her IEP and explicitly wrote for the teacher to provide her with higher level work and higher level questioning. We thought we would see differentiation in her classroom and they would meet her needs.

After winter break things were not getting any better for Emma at school. She was expected to do work that she had mastered long ago. She was board and frustrated. We were all frustrated that the teacher was not providing an education for our child!! I had to do something, but what?? What if I was wrong…what if she was just a bright kid…not gifted?  Ironically I began course work toward my Gifted and Talented teaching license. I confided in my instructor and spoke with my GT resource teacher at work. After the teacher performed Emma’s mid year assessments I asked for the results. Again she was leaps and bounds above where any kindergartner should be! I sat down with my GT resource teacher at school and showed her my evidence (much of it was testing and data collected by Emma’s school). I point blank asked her…she advised me to go ahead and seek gifted identification and placement for Emma.  She felt looking at the ability alone showed great promise. You cannot fake that knowledge…she has it in her somewhere.

So I asked Emma’s school about GT testing again. I got the same answer; 'we don’t really test the young children'. So feeling frustrated, I emailed the GT coordinator and the head of Exceptional Education of the county and asked about this policy. The next day I was informed that they would go ahead and assess Emma for Gifted Identification. So we wait some more!!

The GT meeting….Spring 2011…my husband and I were going into this meeting thinking Emma would easily get in for at least reading. Heck the schools own testing showed her reading at least end of 2^nd /3^rd grade level. She consistently showed in school her reading ability every chance she got. Math…not so much…she would do things at home but not at school.  At the meeting we were in shock. The only evidence that showed her being gifted were our parent report and all her norm based testing. The school/teacher collected work samples, they deemed them not good enough. Then the route of the problem…the teacher questionnaire/report was really telling. The teacher said Emma was below average to average. This lady had seen and tested Emma at well above level…and now she is saying below. This confirmed our fears all year. The teacher just did not like our daughter…and her education was suffering. My stomach turned into knots. I did not say much. I was at a lose for words. Emma was short 1 or 2 pieces of evidence to be deemed gifted.   All that said, the Gifted teacher handed us the information for summer activities for gifted children. We left that meeting hurt and confused and determined to make sure our daughter would get what she needed.

I took a few days…then I got my research together. Information on Twice Exceptional identification…..information on Gifted under achievers. Then I did it!! I send a detailed research based complaint letter to the Director of Exceptional Education, the Coordinator of Gifted and Talented, the Director of Special Education, and the Coordinator of Special Education that we work directly with requesting that other factors be considered and used when evaluating Emma’s identification for the gifted program. All I asked was that they consider more evidence. About a week later we get word. After a file review Emma was found to be Gifted in Reading but not math. So she could not have the general ability label. She would be on monitor for the next year and re-looked at for math again in April  of 2012. Well, at least the got her in. She would receive services in her strength area. At least for 30 minutes a week I know she was learning something new!! We mostly won that battle.

To all you Twice Exceptional parents out there. It is an uphill battle getting our kids what they need. We have to really fight for them. This is the road less traveled. Not many of us know enough and have been lead to fight hard enough. We need to stand up and demand that our children receive ALL the services they need…not just one or the other! We need to help educate those around us.

The Good Fight

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!!

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!

New Kid on the Block

I am new to this whole blogging thing. I hope my story and experiences as a parent of a Twice Exceptional child will inspire and help others. I also hope to connect with other who have been through this as well. We all need the help of our peers! I have only been on my journey with my daughter for 6 short years, but boy have those years been full of ups and downs!!  Emma will be 7 in April. She is in her 3rd year of public school. It has been a struggle to get her what she needs!! Over the next few blogs I will share how we got here today, having the label of Twice Exceptional.

Thanks for your ear!