"Where There Is Great Love, There Are Always Miracles"...

Since my last post, Katelyn has had significant ups and downs. Back in June, she was again admitted to the PPHP program due to her severe aggression and self-injurious behavior. She was placed on Zoloft and her Risperdal was increased. She was then discharged in mid-July and she returned to her preschool for the last few weeks of the summer program. During this time, she had significant difficulties both at home and at school.

After the summer session ended, there was a 4-week break, during which time she was showing significant regression in terms of her behavior. It was quite apparent that she could not deal with breaks in her schooling, as evidenced by her PPHP admissions and 3-week stay at Children's Hospital, all occurring after school breaks. At this point, we were considering out-of-district placement to a school that would specialize in dealing with children similar to Katelyn, exhibiting both characteristics of autism as well as psychiatric issues. Her psychologist, developmental pediatrician, primary care physician, and neuropsychologist were all in agreement that there was sufficient reason to believe that she could no longer function in a public school setting, and out-of-district placement was recommended.

I met with the school to discuss our concerns, and they were very concerned as well. They have been wonderful to Katelyn and her family throughout all of our struggles, and they truly care deeply for her. The school psychologist and adjustment counselor became part of her team and we decided that it was worth giving it another shot at her preschool since that is the ideal place for her, if possible. Her teacher suggested that all members of her team be included on an email list so that we can all be on the same page and communicate about Katelyn's treatment, which has helped tremendously. And, boy, did Katelyn surprise all of us!

Expecting the worst, we were shocked to hear that she did well the first few days of school, and even enjoyed taking the bus again! We were still cautious, wondering if the "honeymoon period" would end like it almost always did, but it has continued! And I am so happy to report that she has drastically improved ever since! She is now playing with Ashley on a daily basis -- they are like best friends now, with the occasional fight, but nothing out of the ordinary for "typical" sibling rivalry. Just weeks before, she wasn't even able to be in the same room as Ashley, and sometimes not even on the same level of the house, without having a complete meltdown. Now she gets upset if she can't be with Ashley!

Who knows what the reasons are for her significant improvements -- perhaps her medication, perhaps the hard work and dedication of her family, school staff, and therapeutic supports, perhaps the fact that we turned our dining room into a play room, perhaps a sudden developmental growth on her part, perhaps all of the prayers and love that so many people have shared with us -- whatever the cause, it is a true miracle.

We have seen what Hell is like, believe me. But having gone through all of the difficulties over the past year, and coming through them alive and intact, we've grown stronger, and we will never, ever give up hope, no matter what obstacles may come our way in the future. We now have a taste of Heaven and we will never let it go.

(Quote by Willa Cather)

Mommy, I'm Still In Here...

My mother told me of a book about a family dealing with childhood mental illness called "Mommy, I'm Still In Here." While I have yet to read the book (although I certainly plan to), the title has really struck a chord with me. It describes perfectly how I perceive Katelyn; she is being held captive by an unknown monster, but deep down the true Katelyn is waiting desperately to be set free.

This picture was taken by my mother recently and it has had a significant impact on our family. Like the title of the book, this photo truly depicts the "real" Katelyn that those of us who know and love her are fighting so hard to get back. I hope it touches your heart as well.

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: