"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)

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.

And a New Journey Begins...

On Thursday, I received a phone call from the principal of Katelyn's preschool (another amazing advocate for Katelyn), asking if it would be possible for me to meet with her and Katelyn's teacher and ABA therapist on Friday. They are aware that I am taking Katelyn to her first appointment with a child psychologist on Monday, so they wanted to provide me with some more input from the school to share with the doctor. Without hesitation, I rearranged my schedule and met with them yesterday. (To see a list of her most concerning behaviors put together by the school, click here.)

As I arrived at the principal's office, she informed me that Katelyn was having the most challenging day yet, and that she wasn't sure if her teacher and therapist could even leave the classroom to come to meet with me because Katelyn needed extra supervision. Luckily, another therapist helped manage Katelyn so that they were able to attend the meeting.

The school and I have had an ongoing dialogue, almost on a daily basis, regarding Katelyn's current issues in the classroom as well as at home, so there were no surprises on either end. Almost immediately, the principal mentioned that they feel that her current preschool classroom and therapies in place are no longer beneficial to her, in that they are pretty much spending the entire day trying to get her to follow the routine of the classroom safely without hurting herself and others. She then explained that, while Katelyn will always have a place at their school, they feel that Katelyn may temporarily benefit from an outpatient psychiatric evaluation and treatment program. She handed me a pamphlet for a Pediatric Partial Hospital Program (PPHP) and reviewed the details with me. Given the current circumstances, I immediately agreed that this was the right road to take at this time.

About the PPHP...
(copied from the pamphlet) "The PPHP is a highly specialized day treatment program that provides comprehensive evaluation and intensive treatment for young children ranging in age from early infancy through 6 years, and their families ... The primary goal of the program is to help children safely live at home while offering children and their families the opportunity to work on behavioral, emotional and social difficulties that occur at home and in the community."

The program offers family therapy, milieu therapy, behavioral therapy, group treatments, and psychiatric medication, if necessary. The PPHP staff includes therapists, nurses, psychiatrists, psychologists, pediatricians and support staff.

Basically, what this means is that Katelyn will be attending this program Monday through Friday from 8:30am to 4pm anywhere from 3 weeks to 2 months, depending on her needs. She will then return to her current preschool setting once she is ready to be discharged from the program, and appropriate followup treatment will be arranged. (Unfortunately, transportation is not provided, so I will be crossing state borders twice a day during rush-hour traffic to get her to and from the program, but hopefully it will be worth it!)

While it is definitely not an easy decision to make to enroll our 3-year-old child into a psychiatric program, we feel confident that this is the best course of action to help Katelyn, as well as our family. Anyone who knows me can testify that I do not do anything lightly when it comes to the well-being of my children. It has been absolute torture on all of us as her parents, family, friends, teachers and therapists, to see her suffering the way that she is, especially since she had been doing so well just a few months ago. However, we are hopeful that this program will be able to provide not only an answer as to what is causing this behavior, but also the appropriate method of treatment in order to help our beautiful daughter return to us as soon as possible.

Thank you to all who have offered us the love and support that we need to sustain us throughout this emotionally exhausting ordeal. We never envisioned this happening, but we are prepared to begin yet another journey to get our beloved daughter back. And of course, I will continue to share our story each step of the way.