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.

We're Now On Facebook!

Hi everyone!

Now you can follow my blog on Facebook! You can click on the LIKE button on the right upper corner of this page, or you can visit the page directly by clicking HERE!

Thanks for your continued support! :)

A New Dawn, A New Day...

As usual, a lot has changed since my last post... As time went on, we began to realize that Katelyn needed an educational placement that specialized in children with autism spectrum disorders and other related issues. After having her neuropsychologist visit her preschool classroom, it was determined that an out-of-district placement was necessary in order to provide Katelyn with the most appropriate educational setting. We hired an educational advocate, and subsequently a special education attorney, and we were able to achieve the ultimate goal for our daughter. After an emotionally and financially draining process, the school district agreed to out-of-district placement at a very reputable private day school that specializes in autism that provides ABA instruction all day, which also happens to be the same place where she was originally diagnosed at age 2.5. She also has been receiving home ABA services again through one of the agencies that worked with her a few years ago, and this has been extremely productive for her. We always knew that she responded well to ABA teaching, and we're so glad that she will be receiving ABA instruction on a consistent basis again since it was so successful in the past.

Today was her first day at her new school and it truly could not have gone any better. She was excited this morning to be going to a new school. We had created a social story with pictures of her new school to help with the transition and she really enjoyed reading it. When we arrived at the school, she was very happy and talkative. We were brought to the integrated preschool classroom, which has peer models. When we arrived, the other children were not in the classroom, which made it very easy for Katelyn to get situated and check out her surroundings. After a few minutes, the children returned to the classroom, and I was not sure how Katelyn would react. But she surprised us and was happy to see "new friends" and even asked one little girl her name (indirectly, asking us "What is her name?")! The little girl responded with her name and then I prompted Katelyn to respond that her name was Katelyn, which she did. It was snack time, so Katelyn sat at the table with teachers around her and I made my exit. Katelyn asked me to stay, but did not get upset at all when I told her I had to leave and would be back later after she played with her new friends.

When I arrived to pick her up, I saw Katelyn playing with toys near the other children. The staff informed me that she had a wonderful day and that she was able to spend the entire day in the integrated preschool classroom! The original plan was to have her in another classroom without peer models and slowly introduce her to the integrated setting, if possible, but once again, she surprised us! She went to the cafeteria for lunch, sat independently with her friends at circle time, and even participated by raising her hand during art class! At times, she was taken aside to work on some discrete trial training and assessments, and while she was a little distracted, she did not have to be removed from the room or behind a partition as was expected. Overall, she had an amazing day!

When she saw me, she was very excited and she said she had fun at her new school. She even went over to her new friends and said bye to them. Then she shouted, "Thanks, new school! Thanks, new friends!" and became very happy and clapped when I told her she would be coming back tomorrow.

We are so relieved that she enjoyed her first day at her new school and we feel 100% confident that this was the right decision for her. We can't wait to watch her continue to flourish and exceed our expectations. We are eternally grateful to all of you who provided support and prayers that Katelyn would get what she desperately needs. There is nothing we wouldn't do to help our daughter and we will continue to be vigilant to ensure that she continues to receive the appropriate services that she deserves.

Getting ready for her first day at her new school!

Taking it all in...

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.

It's Good to be Back...

Katelyn was officially discharged from the PPHP program on Monday. The staff had a little going away party for her while I met with the doctors to discuss her discharge plan. The kids sang a goodbye song to her and then it was time for her to leave her permanent mark in the form of a yellow painted hand print on the wall. After four and a half weeks in the program, it was now time to complete the transition back to her preschool.

The week went fairly well overall. Her teacher reported that Katelyn seems very happy to be back, but that she definitely requires constant attention, which we completely expected. Because of this need, the school has provided her with a 1:1 aide in the classroom. I am also driving her to and from school because we are concerned that taking the bus could cause more anxiety for Katelyn at this point, despite the fact that she really enjoyed it in the past. We will be meeting with the school on Tuesday for her IEP meeting to further discuss her current needs and to make sure that all appropriate services are in place.

Her teacher and other support staff are very happy to have Katelyn back, and we are so glad that she is back in her preschool classroom that she loves so much!

Here are some photos from her last day at the PPHP program:

Let the Transition Begin...

Katelyn has been in the partial hospital program for 4 weeks now. She seems to be adjusting well to the Prozac, so the doctor decided to increase the dose slightly, which we did on Tuesday night. Her level of anxiety is still quite high, but it has only been a little over two weeks since she started the medication, which can take much longer to reach full effect. It does, however, seem to be helping with the depression aspect. So far, we have seen some significant improvements in terms of her ability to enjoy things, laugh, and smile, and she is now showing some interest in previously cherished objects, including Giraffe (although not anywhere near the extent that it was before). She is slowly becoming more tolerant of other children it seems. Normally, she would lash out and hit another child for getting too close to her, but now she is occasionally allowing another child to give her a toy or even a hug. She is also smiling at other children a little bit and saying "hi" spontaneously.

We are seeing an increase in spontaneous screaming, and she has been getting very hyper and overstimulated lately, so we are going to keep an eye on this because it could be a side effect of the medication. However, if we have to choose between a hyper child and a depressed child, we would much rather have the hyper child who is able to laugh, be silly, and enjoy things once again, as long as it doesn't interfere with her ability to function at home and school.

Because we are starting to see some improvements, we have decided to attempt to begin a transition back to her preschool. This past Tuesday, her teacher came to visit her at the day program. Today, she is going for a half-day at her preschool and her therapist from the day program is going to be there to assist in the transition, and the same will happen on Monday. If all goes well, she will be discharged from the hospital program on Tuesday. We will be meeting with the school the following week to discuss her current needs (since they are very different than they were previously) and write up a new IEP to ensure that all of the necessary services are in place for her as soon as possible. We are looking forward to getting her back to her preschool with her wonderful teacher, principal, and therapists, who have all given us a tremendous amount of support and guidance throughout this whole ordeal. They truly love and care about Katelyn and we couldn't be more grateful to them.

Although we are seeing some positive changes, she still has a lot more to overcome. It is going to be a long road, but with support from professionals, family, and friends, we are confident that we will get our beloved Katelyn back to where she needs to be.