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...

Too Young To Diagnose...

People often say we need to treat the cause of a disease rather than the symptoms, since treating the symptoms without knowing the cause is like putting a band-aid on the problem, not solving it. We need to get to the root of the problem, what is causing the symptoms? Well, this doesn't apply to childhood mental illness. Too young for an official diagnosis, all we can do is treat the symptoms that the child presents and hope that they are effective, and if not, make necessary adjustments along the way until the child is old enough to determine an "accurate" diagnosis.

A few weeks ago, I took Katelyn to see her developmental pediatrician for her routine followup appointment. We have a great system of communication and I regularly update her via email on how Katelyn is doing. I had described some recent concerning events, including what appeared to be mood swings (going from rage/aggression to hysterical laughter), hyperactivity and uncontrollable laughter episodes where she does not seem to be in touch with her surroundings, and some odd signs that we had not seen since starting her current medications roughly a year ago that made us suspect she could possibly be seeing or hearing things that are not really there.

Since she is now so much more verbal than in the past, she is able to articulate her thoughts a bit more clearly, which does sometimes help, but at her young age of just shy of 5 years old, it still leaves us questioning how much is "normal" and how much could be signs of mental illness? For instance, many children have imaginary friends or have great pretend skills. In fact, one of Katelyn and her sister's favorite things to do is pretend they see Swiper the fox from Dora the Explorer and yell, "Swiper, no swiping!" and run away, laughing. However, the difference in my opinion of what is "normal" imaginative play and abnormal behavior is when the child becomes visibly frightened and goes into a complete meltdown, over what could otherwise be perceived as pretend play. I am not a mental health professional, but it doesn't seem normal to me that a child would be terrified by "normal" pretend play or imagination.

Below is a video from April 2011 that shows just one example of what I'm referring to. I will fully admit that I did not know what the proper response would be in this situation, to tell her that what she thinks is a little girl is not real or to pretend that I did see the little girl too. I was not prepared for this and was caught off guard.

At the appointment with her developmental pediatrician, we discussed the symptoms and changes in detail. At that point, the doctor said that she feels that Katelyn may be displaying psychotic features as we have suspected for a while, and that we should slightly increase her atypical antipsychotic medication to see if it helps. She further stated that if this is the case, Katelyn may not be able to distinguish what is reality and what is not, and that we need to provide her with as many positive, happy moments in her life in order to help her discern in the future what is real and what isn't when she is an adult. She will possibly need medication for her whole life to help her with this as well.

The doctor said that she is not ready to diagnose schizophrenia or something similar at this time due to Katelyn's young age, but she does foresee her receiving a mental health diagnosis down the road once a more definitive diagnosis could be reliably achieved, if possible. At this point, PDD-NOS is the closest diagnosis that seems to fit Katelyn's profile, although she demonstrates many atypical signs as well.

The good news is that Katelyn continues to thrive and improve at her new private day school. She could not be happier at her new school and she is responding very well to the ABA approach, which further demonstrates my argument that it doesn't matter what she is diagnosed with -- call it "XYZ" or "ABC" -- if it is working, then it is an appropriate method of treatment!

So, until we get an official, reliable mental health diagnosis for Katelyn, we will continue to treat her symptoms instead of trying to determine the cause, despite how difficult it is to not know what exactly is going on with your child. For now, we'll hold out hope that one day in the not-too-distant future, we will have the answer we are looking for. And whatever that answer is, we will deal with it, and do everything we can to empower Katelyn to deal with it as well.

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...

"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:

Right Back Where We Started From...

It has been quite a while since I last posted and a lot has happened since (including the birth of our baby boy, Trevor Kyle, in January!)

In December, Katelyn had a bout of pneumonia and it really set her back. Up until then, she had been really progressing well. However, being very sick for over a week, coupled with then being out of school for winter recess, she really regressed in terms of her behavior and willingness to do things independently. Her control issues also escalated and she became even more demanding than before.

After doing some research and talking with other parents of children with autism, we decided to try a course of Nystatin since she was on amoxicillin for the pneumonia and antibiotics often can cause an overgrowth of yeast in the body, especially in children with autism. We have yet to see any improvement. In fact, as time goes on, her behavior has been getting far worse, both at home and now at school.

We are now suspecting that something else is going on in addition to her autism that is causing her to behave this way. Her teacher and therapists have never encountered a child like Katelyn and they are as baffled as we are. We have tossed around the idea that perhaps it is obsessive-compulsive disorder (OCD) or even depression that is causing her to be so demanding and controlling, but now we are leaning more towards oppositional defiant disorder (ODD). I had heard of ODD way back when I first read about autism, but at the time I did not feel that Katelyn fit that profile whatsoever. Now, however, she seems to fit it to a tee.


Here is a brief description of oppositional defiant disorder:

In children with Oppositional Defiant Disorder (ODD), there is an ongoing pattern of uncooperative, defiant, and hostile behavior toward authority figures that seriously interferes with the youngster’s day to day functioning. Symptoms of ODD may include:

• Frequent temper tantrums
• Excessive arguing with adults
• Often questioning rules
• Active defiance and refusal to comply with adult requests and rules
• Deliberate attempts to annoy or upset people
• Blaming others for his or her mistakes or misbehavior
• Often being touchy or easily annoyed by others
• Frequent anger and resentment
• Mean and hateful talking when upset
• Spiteful attitude and revenge seeking

We have been seeing an increase in aggression both towards herself and to others, especially to her sister, Ashley. Thank God she has not directed any of this towards Trevor, but I worry that it is only a matter of time before the novelty wears off. She is also starting to hit other children at school without any reason other than the fact that they walked by her. She has been increasingly demanding and controlling, and she deliberately seeks to annoy or upset others, especially me unfortunately, probably because I am the main disciplinarian since I am with her the most. She will purposely defy us, even if it means forfeiting privileges that she earned, and begged for, moments earlier. If we say yes, she says no. If we say no, she says yes. Every single aspect of our lives with Katelyn has become a constant battleground. She cuts off her nose to spite her face.

Because this is interfering with her at school and at home, we have decided to pursue psychiatric evaluation for Katelyn. Our first step is going to be getting her re-evaluated by the same doctor who diagnosed her autism. This will take place in March and we will get the results of the evaluation mid-April. We also put her name on a waiting list for a local center specializing in children's behavioral health, but they said that we will most likely not hear from them for at least two months to book an evaluation.

So now the waiting begins once again...the not knowing...the hoping that getting a diagnosis will offer some sort of help for our child and our family as a whole. We are right back where we started from when we first began this journey back in 2008, but this time it feels much different to me.

When receiving the diagnosis of autism, I threw myself into advocating for my child and learning as much as I could about autism, but this is really affecting me to my core. I cannot express how difficult it is to deal with the fact that your child may have a disorder that causes her to want to purposely upset you, or that creates such turmoil inside of her that she no longer enjoys things that she used to because she is in a constant battle within herself. I am often reminded of the nursery rhyme line: "And when she was good, she was very, very good, but when she was bad, she was horrid." And what makes it worse is that I know in my heart that this is NOT my child...this is not who she was just a few short months ago. And I will do everything in my power to ensure that this is not who she will be forever.