If you are one of my friends on facebook, I have been placing "cryptic" (per a good friend) messages in the last few days in regards to something that is happening with our family. I had wanted to get more information before I spoke in length about this - but it still may be several more days to even weeks...months...years...before we have all the answers. So - here is my story:
Last December (2009), we had our youngest, son Carson, evaluated through Early Steps for a speech delay. At the time we didn't know if Carson was actually delayed in his speech, or if his older sister was so advanced, that Carson (being normal) seemed delayed in comparison. When the people with Early Steps came out to evaluate him, they measured ALL areas of his development. At the time, he was normal in ALL areas, including communication. He was in the low end of normal for communication, but still normal.
Jeff and I were still not happy...but a friend told us that when he turned three, he would be eligible through FDLRS (Florida Diagnostic & Learning Resources System) to be evaluated again, and that their "normal" levels are set at a different criteria. So, in July (2010) when Carson turned three, we called FDLRS and got a packet of information sent to us. After answering about 1001 questions as to Carson's development, we sent the packet back in and awaited the reply. In August we received a letter that said that he qualified for further evaluation, and that someone would call us to set up our "Team Speech Evaluation". Come October, we still hadn't heard anything...so I called the number at the bottom of the letter every day for two weeks until I finally got a live person on the phone. Carson was scheduled for his evaluation on January 6. Anxious but happy we finally had an appointment, Jeff and I waited (non)patiently for his appointment date.
The day of the appointment, Jeff, Carson and I drove across town to Metcalf Elementary School, where all the evaluations are completed. As Jeff and I sat down at a round table and answered another 1001 questions about all stages of his development, Carson sat down at a little table with four women around him asking him questions and having him do simple tasks. About 30-40 minutes into the evaluation - Carson pretty much quit and wouldn't cooperate at all. A week later, they called me and asked me to bring him back in for more evaluation because they felt like they didn't get enough information from him to feel comfortable with their assessment. So, on January 18, Carson and I went back. This time, Carson sat down with only 2 ladies as I sat at the big round table and watched. Another 30-40 minutes and he was done...meaning he didn't want to cooperate at all.
This past Wednesday, the 26th, Jeff and I went back yet again and were given the results of his evaluation. Let me say that all I expected was that they would tell us that he did in deed qualify for speech therapy and would be approved for a couple of times a week. Never in my wildest dreams would I have thought that they were going to tell me that Carson is Developmentally Delayed with a speech and language impairment, and that they were recommending full time placement in the Pre-K ESE department with the Alachua County School District. I felt like I had been punched in the gut. Jeff asked them if Carson gets his speech problems fixed, would the rest of the delay sort itself out. The child psychologist at the table said that although a lot of the delay would be corrected, she really felt like there is an underlying reason behind the delay. Although she wasn't ready to make a diagnosis, she suspects that Carson either is ADD or Autistic.
On Thursday I showed the mountain of paperwork with their findings to another good friend, C, who has a Doctorate in Special Education, and has worked in a Pre-K ESE Department in Leon County. After looking over all the paperwork, and trying to be as objective as possible since she has known Carson since birth, she says that she agrees with the child psychologist. She agrees that Carson should be in a full time program, and that she also thinks that just solving the speech isn't going to solve all of Carson's issues.
As much as we respect C's opinion...Jeff and I are actually going to go one step farther. Another friend, A, is a very good and respected child psychiatrist in town. She suggested that we have him evaluated by an M.D. (such as herself). An M.D. would actually be able to pin down the diagnosis and either a) confirm our fears that he is autistic or b) confirm our hopes that getting his speech caught up will solve all the problems. However, she is afraid she wouldn't be objective as she is close to us and our family, so she is referring us to an M.D. in Ocala that she respects and trusts greatly. On Monday we will call him and set up an appointment for another evaluation (which will probably not be for another 1 or 2 weeks), and hopefully some more answers.
Until then, we plan on going along with FDLRS findings, and get him registered in a local elementary school in the Pre-K ESE department. We are currently assigned to Terwilliger Elementary School, but we are hoping to get re-assigned to Talbot Elementary School for three reasons: 1) Kendall is going to pre-school (literally) right around the corner from Talbot, 2) Jeff's office is just down the same road that Talbot is on, and 3) my real estate office is just down the road from Jeff's office. Essentially, Talbot would be so much more convenient for us. Jeff and I are meeting the Pre-K ESE Department head on Monday morning to not only talk about the delay in getting Carson evaluated in the first place, but also about getting his school reassigned.
So - as I said above - I still feel like we have more questions than we have answers. But...here are a few truths that I know with every ounce of my being: Carson is a very happy and healthy child with an amazing spirit. I had a very hard time getting myself to the point that I could talk about this without crying...heck...even thinking about it got me crying. I think that when you have all these plans in your head for your children, and this comes out at you from seemingly no-where...I had a hard time getting around what I had planned, and what it is now. I am trying not to think too much about the future at this point...just take it day by day until we have more answers. If the M.D. says that Carson is autistic...then I'll buy every book on autism that I can find and soak up as much information as I can so that I know what I'm talking about when we talk to other professionals or doctors. If the M.D. says that Carson is ADD...then I'll do the same thing. If the M.D. says that Carson is perfectly normal and just needs to get his speech figured out, then I'll find the best speech therapists I can and learn what they do so that he can get to normal as quickly as possible. Regardless of what the M.D. says...or anyone else for that matter... my son is the most wonderful boy in the world and I'm lucky to have him in my life. That I know without having to be evaluated.
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