Results From Neuropsych Evaluation...

This past Wednesday, we met with the neuropsychologist for the feedback session to discuss the results of Katelyn's recent neuropsych evaluation. The doctor confirmed that, in addition to PDD (autism spectrum), Katelyn DOES have psychosis. She said that it is still too early to determine a specific diagnosis, such as schizophrenia, but that she is definitely responding to hallucinations, or what the doctor preferred to call "extra-sensory experiences" that make Katelyn afraid and do bad things. At this point, she will keep the PDD diagnosis, but her diagnosis could change in the future since childhood schizophrenia and PDD have many overlapping symptoms. The doctor talked about how rare childhood psychosis is, and then when you couple it with PDD, it is even more rare to see this in a child her age (5 years old). She also talked about Katelyn's extreme level of anxiety, which we already were aware of. Who wouldn't be anxious with what she is going through?

Even though this has been suspected for quite some time and I knew in my gut that Katelyn was having hallucinations, it is a bittersweet feeling to finally have confirmation. Having been told by so many "professionals" in the past that, "Oh, that is just autism," it is reassuring and validating to finally have doctors agree that this odd behavior is NOT autism at all. However, it is still difficult to hear that your child truly is suffering from psychosis. It doesn't change anything about how we all love Katelyn and who she is; it just means that we will need to continue to fight harder and harder to ensure that she gets all of the services she needs to reach her fullest potential. It will be a life-long journey for her, but we will all be here to help her navigate through her perceived world and reality.

Thank you to all of you for your support over the years.

Another Video of Katelyn...

Here is another video of Katelyn I put together to hopefully help her doctors to determine what is going on with her. It is less than 10 minutes long, but shows a pretty good amount of her odd behaviors and language. There is no question this is not a characteristic of her autism, but it is becoming more apparent as she gets older that it could be psychosis/hallucinations.

"This Is Not Autism" (videos and phrases)...

As I've mentioned before, Katelyn presents not only with symptoms of autism spectrum disorder, but also of some other possible co-morbid psychiatric condition, quite possibly a psychosis of some sort. We have seen a recent increase in this odd behavior and recent increases in her Risperdal medication have no longer been effective as they were in the past.

Here are some recent videos of Katelyn that show some of what we are seeing at home. What we observe is usually far "worse" than this (difficult to capture on video), but it gives a rough idea of some of the things we are seeing, no pun intended...

And here are some recent phrases Katelyn has said when describing what she sees/hears (pardon the poor grammar, as these were just quick notes I jotted down):

11/10/11
Sitting with me at table while I did work...saying voh, webs, etc., then told me the webs were talking to her and laughing at her. Difficulty with feeding at dinner. Spitting out, looking up, talking about ock, etc., being defiant saying no, but could tell did not want to act that way.

11/11/11
Looking up at wall, taking shoes off as asked, then said No to putting them away. Looked up and said she saw Ew. I repeated, “You see Ew?” She said yes, Ew is climbing up the wall right there and pointed. She then said he was in a purple web with a sprinkle in it. Then she said Ew is yucky looking and that he is green. She said he talked to her and told her No about putting her shoes away.

11/14/11
In mommy’s room, talking to herself saying “Where is Ew?” over and over. I asked her what Ew looked like and she again said he is “Yucky.” I asked what color is Ew and she again said “Green” – with the odd mischievous look on her face. Then began blowing my hair and whistling and laughing hysterically saying Ew while doing it even though I told her I did not like that.

11/18/11
Getting dressed in living room, kicking me, laughing hysterically while looking off, talking about Ew, then Waw, saying Waw over and over and then she said she sees Waw and that Waw is a blue curl stuck up on the ceiling. Got extremely manicky and uncontrollable and defiant while talking about Waw.

11/25/11
In mommy’s bed with me and Ashley. Looking up at ceiling, saying Yaw and Yock. Then said I see Yock. She said Yock is not nice. Yock is in a purple web. Yock is naughty to me, Yock is always naughty to me. Then talked about seeing colorful bugs in her bed and on her sheet. She said they were red, green and blue. Said she saw them in the web with Yock. Got upset when I told her I didn’t see the colored bugs. Started talking in weird words, saying Yock is Guckak and Bocka and other strange words. Lots of talk about Yock throughout the day, even at stores, etc.

Placement, Re-Placement...

Once again, it has been a while since my last update. We have spent the last few months having meetings and discussions with our district school system and Katelyn's current private school regarding the appropriateness of her placement. There are a few issues that have developed since she started at her current school. The biggest is that her profile has significantly changed, so her needs are vastly different from when she first began there. The original plan was that she would be in a substantially-separate classroom without peer models since it was felt that she would not benefit from peer models and that she needed intense 1:1 instruction in an ABA environment, but she would have opportunities down the road to integrate with the peer models if appropriate. She continues to demonstrate that ABA is the appropriate method of learning for her, but she has proven all of us wrong in that she IS benefiting significantly from being with the peer models in the integrated preschool classroom. In fact, she has never even been in the sub-separate classroom as planned since she did well with her first exposure to the peer models on day 1!

So we've been presented with a challenging situation since we all agree that a sub-separate classroom is NOT appropriate for Katelyn. However, her current private school only offers peer models in the preschool classroom, so once she ages out (max is age 5 and she is currently 5), her current school will not be able to provide an appropriate environment for her.

This led the district school system to propose her return to district to a brand-new kindergarten program that they felt would be most appropriate for her. However, after a lengthy meeting this morning to discuss observations of the proposed program, as well as her current presentation of symptoms and complicated needs, we are in agreement that the district also cannot provide an appropriate program for her at this time.

So where does that leave us? We are now looking for a new placement for Katelyn that can meet her unique needs. Since she is quite complicated in her presentation (displaying characteristics of not only autism, but most likely a co-morbid psychiatric illness, such as psychosis) and her needs are unique, it is going to be difficult to find a school that is appropriate for her. She will require an environment that can offer not only intensive ABA instruction with highly trained staff and BCBA supervision, but also one that can offer opportunities for inclusion with peer models, something that many schools around here only offer until preschool age like her current placement.

So at this point, we are in agreement to look at a handful of schools in the area to determine whether they can offer an appropriate program for Katelyn. We are also in the process of completing another neuropsych evaluation to get a better understanding of what her current needs are, especially since we are seeing an increase in the odd behaviors (what appears to be psychosis/possible hallucinations) despite the fact that her medication has kept this at bay for the past year. Therefore, a new medication trial may need to be attempted.

We are thrilled with her current placement and the progress that she has made there, but we all recognize that Katelyn's needs cannot be met once she ages out of the current program. So the next leg of our journey with Katelyn begins...

Oh, My, How Things Have Changed...

It has been almost 2 months since my last post, but not due to lack of things to talk about. On the contrary, there is far too much to even begin to describe what has been happening in our lives lately. Unfortunately, I do not have a lot of time right now to give a lot of details, but I will do my best to expand on this at a later date. I just wanted to share a brief synopsis since many of you have been inquiring on what has been going on with Katelyn...

Katelyn's presentation of symptoms has really changed drastically over the last few months. Every professional who has come in contact with her recently has agreed that she no longer seems to be presenting like autism, but instead like a psychiatric disorder. Our family now believes that she is experiencing some sort of hallucinations, including command hallucinations that prevent her from eating, make her hurt herself and others, and more. While she is far too young to be given a diagnosis, pretty much all of her symptoms meet criteria for early child-onset schizophrenia. It is extremely rare for a child of her age to present with schizophrenia, but after what we have witnessed over the last few months, we are convinced that she has some sort of psychosis. And like I always say, just because something is extremely rare does not mean it doesn't exist. I don't care if the odds are 1 in a billion...if you are that 1 person, statistics have no meaning.

We are in the midst of trying to advocate for our daughter as we always have, but now we are facing many brick walls since we are entering the realm of mental illness. While autism is gaining more and more awareness and supports, unfortunately there are not many resources for childhood mental illness. Despite being kicked when we are down in what appears to be an uphill battle, we will not let this stop us from continuing to fight to get help for our beautiful little girl. Through no fault of her own, or anyone else's for that matter, Katelyn was dealt a difficult hand in life, but we will not sit back and watch her suffer. It may take years, and many bumps and bruises along the way, but we have faith that we will eventually find answers and appropriate treatment for what is causing our daughter so much pain.

Thank you all for your support throughout this extremely difficult time. Whenever I find the time (so probably never, haha), I will be revamping this blog since we most likely are facing something other than autism. However, I will continue to support autism research and awareness.