This morning was the first step in Katelyn's reevaluation process, the parent interview at the autism diagnostic center. Kevin was up all night sick, so I ended up going on my own. Thankfully, I was also armed with a very informative letter from Katelyn's amazing preschool teacher, explaining in detail how Katelyn's behavior has affected her at school.
I mentioned how far Katelyn has come since her diagnosis in terms of her autistic symptoms, and that, aside from the behavior piece, sometimes it seems like she doesn't even have autism, but the doctor pointed out some things to me that demonstrate that she is definitely on the spectrum, which actually was reassuring to me. (I know that must sound strange, but lately I've been going back and forth on an emotional rollercoaster wondering if she is indeed autistic or if this is something entirely different going on.) She said that although Katelyn has shown significant improvement in many of her symptoms, Katelyn is still exhibiting signs of autism. For example, although her speech has dramatically improved, her pragmatic language is not there, and it sounds to her like Katelyn is sometimes using delayed echolalia and scripting to communicate. She is also still labeling and listing things (for example, I told her how she talks about school and she will go down the list of kids, teacher/aides, etc. "I ready to see Olivia, I ready to see Jason, and Ryan, and Miss Lauren, and Sabrina..."), she cannot have a back-and-forth conversation yet, etc. Also, her social skills are still way behind. She also pointed out that even though she is not flapping anymore, she is turning that into something else, like her fingers overlapping (what I call the lobster claw hand --a strange thing she does with her index and middle finger) or clenching her fists like she is upset or anxious.
In terms of the behavior issues, she asked if we've had a functional behavior analysis (FBA) done before and I said no. She said that Katelyn's behavior is out of her realm (and she's a top expert on autism!) and that we definitely need to get an FBA done as soon as possible. This will involve having a team come to the home and school environments to observe what is going on and take data and attempt to implement some strategies for us to use. She agreed that Katelyn's behavior is very puzzling and hard to figure out. She suggested possibly negative attention seeking behavior, but also recommended genetic testing because some genetic disorders can cause regression like this, especially the all of a sudden not showing interest in previously enjoyed things or activities. I told her that some genetic testing was done around the time of suspected seizures back in Jan 2009 and she said she would like to see the results from the neurologist. She does not think it is a yeast/bacteria issue related to the pneumonia/antibiotics because she said, in her opinion, that there is no way it would last this long. She emphasized the importance of consistency on the part of her parents, teachers, and caregivers. She even mentioned that this is serious enough that if we do not get help for her now, Katelyn could end up having to go to a special school or even in a residential program somewhere, NOT because of her autism or lack of cognitive skills, but because of her behavior. If that isn't serious, I don't know what is. She did agree that it sounds like this is something other than the autism going on in addition to, and probably made worse by, the autism.
So, that is where we are at so far. Now we have to wait until April 1st (date was changed) for her evaluation. I also got her an appointment with a child psychologist for next week, so hopefully she will be able to help us in the interim with how to try to deal with her behavior at home, as well as at school.
Thanks for all of the good thoughts and prayers in this difficult time. I will be sure to keep you all up to date on what is going on in this reevaluation process.
I mentioned how far Katelyn has come since her diagnosis in terms of her autistic symptoms, and that, aside from the behavior piece, sometimes it seems like she doesn't even have autism, but the doctor pointed out some things to me that demonstrate that she is definitely on the spectrum, which actually was reassuring to me. (I know that must sound strange, but lately I've been going back and forth on an emotional rollercoaster wondering if she is indeed autistic or if this is something entirely different going on.) She said that although Katelyn has shown significant improvement in many of her symptoms, Katelyn is still exhibiting signs of autism. For example, although her speech has dramatically improved, her pragmatic language is not there, and it sounds to her like Katelyn is sometimes using delayed echolalia and scripting to communicate. She is also still labeling and listing things (for example, I told her how she talks about school and she will go down the list of kids, teacher/aides, etc. "I ready to see Olivia, I ready to see Jason, and Ryan, and Miss Lauren, and Sabrina..."), she cannot have a back-and-forth conversation yet, etc. Also, her social skills are still way behind. She also pointed out that even though she is not flapping anymore, she is turning that into something else, like her fingers overlapping (what I call the lobster claw hand --a strange thing she does with her index and middle finger) or clenching her fists like she is upset or anxious.
In terms of the behavior issues, she asked if we've had a functional behavior analysis (FBA) done before and I said no. She said that Katelyn's behavior is out of her realm (and she's a top expert on autism!) and that we definitely need to get an FBA done as soon as possible. This will involve having a team come to the home and school environments to observe what is going on and take data and attempt to implement some strategies for us to use. She agreed that Katelyn's behavior is very puzzling and hard to figure out. She suggested possibly negative attention seeking behavior, but also recommended genetic testing because some genetic disorders can cause regression like this, especially the all of a sudden not showing interest in previously enjoyed things or activities. I told her that some genetic testing was done around the time of suspected seizures back in Jan 2009 and she said she would like to see the results from the neurologist. She does not think it is a yeast/bacteria issue related to the pneumonia/antibiotics because she said, in her opinion, that there is no way it would last this long. She emphasized the importance of consistency on the part of her parents, teachers, and caregivers. She even mentioned that this is serious enough that if we do not get help for her now, Katelyn could end up having to go to a special school or even in a residential program somewhere, NOT because of her autism or lack of cognitive skills, but because of her behavior. If that isn't serious, I don't know what is. She did agree that it sounds like this is something other than the autism going on in addition to, and probably made worse by, the autism.
So, that is where we are at so far. Now we have to wait until April 1st (date was changed) for her evaluation. I also got her an appointment with a child psychologist for next week, so hopefully she will be able to help us in the interim with how to try to deal with her behavior at home, as well as at school.
Thanks for all of the good thoughts and prayers in this difficult time. I will be sure to keep you all up to date on what is going on in this reevaluation process.
5 comments:
Shannon, you seem like a super dedicated and wonderful parent and I commend you for trying to do what is best for your daughter. However, I think trying to "box" her into a diagnosis may do more harm then good. As a parent it is hard to accept less than desirable behavior in our children as we feel it is a reflection of ourselves, but at the end of the day "bad" behavior isn't always something that can be diagnosed. As a parent of a child with some social difficulties I can understand what you are going through and there was a time I would have felt so much better to have a diagnosis of Autism etc, but I have accepted her as for who she is and continue to work with her and try to build her social skills without putting a label on her. That is not to say your daughter is not autistic or have any other disorder, but having walked down a very similar road I would be careful, again in trying to box your beautiful daughter into some kind of diagnosis. Best of luck to you and your family and I hope you find the answers you are looking for. Be well & best wishes! :)
It is a frustrating journey at times, especially when the experts are scratching their heads. However, there will be answers and Katelyn has so many people that love and care about her! None of us will ever give up and her abilities will continue to develop as she grows. Underneath the problematic behavior is a little girl just learning her way around the world and her own mind. I know in my heart that she wants to be able to be calm and happy and we will all help her get there. Love, Mimi (Katelyn's Grandmother, Kim)
As Katelyn's teacher, you know that I do and will support you every step of the way. You are doing the right thing in pursuing answers for your daughter. Only those who know you, your supportive family and your daughter can understand the depth of what you, Katelyn and your family are experiencing. Keep your chin up, we will get there!
Lauren
This comment is directed to the first comment by Anonymous:
While I appreciate your input and thank you for sharing your story about your daughter, I think I need to clarify a few things.
This is not a matter of not accepting my daughter for who she is. I accept and love her no matter what, and have never had an issue with her diagnosis of autism. This is also not about trying to fit her into a box and slap a label on her just for the sake of labeling her. This is about trying to find an answer as to what caused my beautiful, happy, healthy child to suddenly become self-destructive, aggressive and completely miserable, almost overnight. That is what I cannot and will not accept. It is honestly as if someone stole my child and replaced her with a new one that NO ONE in our family (or her school) recognizes. If getting that answer means putting a diagnostic label on her, then so be it, because if we can figure out what the cause is, then we will hopefully be able to figure out a solution or method of appropriate therapy.
I have learned the hard way that in order to advocate for your child, it is often necessary to do your own research and arm yourself with the facts BEFORE (or in tandem to) seeing a doctor. It is an unfortunate reality, but we can no longer simply rely on the so-called experts to have the answers.
If I had continued to listen to her old pediatrician that a speech delay is normal (she even thought that Early Intervention was not appropriate for my child, even though she had NO language at 2 years old), or that there was "no way" that Katelyn was autistic despite having numerous red flags, we would never have even determined that she HAS autism. I had to do my OWN research and advocate for her to her pediatrician and to Early Intervention (who also thought there was no way that she had autism). I received the same criticism at that time from many people that I should not try to box her into an autism diagnosis. But I was right, and thank God I didn't give up.
I have had similar experiences with her GI doctor about her stomach issues, as well as the orthopedist who denied that Katelyn needed physical therapy or that her toe-walking was a problem. We are now working with a second opinion GI doctor who thinks that everything the first doctor has been doing was all wrong, and after pushing for a PT eval through Early Intervention and being denied, thankfully her preschool agreed to do an eval and found that she has many areas that require services. Again, if I hadn't done my own research and pushed for what I KNEW was necessary, then my daughter would not be getting the help that she truly needs.
Something major is going on with Katelyn right now and everyone who knows her is baffled. While I do hope that the "experts" will be able to figure this out, I am still going to continue to search for answers anywhere and everywhere possible.
Again, I appreciate the fact that you are trying to help and are being supportive, but I just felt the need to clarify. I hope that you understand that if this comes off in a negative tone, it is not intentional. I truly am grateful for any and all opinions and advice as we try to figure out what is going on with my precious child.
(((HUGS))) Mom!
Lauren, I cannot thank you enough for all that you do for Katelyn and our family.
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