"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)

Step 1: Parent Interview at the Autism Diagnostic Center...

This morning was the first step in Katelyn's reevaluation process, the parent interview at the autism diagnostic center. Kevin was up all night sick, so I ended up going on my own. Thankfully, I was also armed with a very informative letter from Katelyn's amazing preschool teacher, explaining in detail how Katelyn's behavior has affected her at school.

I mentioned how far Katelyn has come since her diagnosis in terms of her autistic symptoms, and that, aside from the behavior piece, sometimes it seems like she doesn't even have autism, but the doctor pointed out some things to me that demonstrate that she is definitely on the spectrum, which actually was reassuring to me. (I know that must sound strange, but lately I've been going back and forth on an emotional rollercoaster wondering if she is indeed autistic or if this is something entirely different going on.) She said that although Katelyn has shown significant improvement in many of her symptoms, Katelyn is still exhibiting signs of autism. For example, although her speech has dramatically improved, her pragmatic language is not there, and it sounds to her like Katelyn is sometimes using delayed echolalia and scripting to communicate. She is also still labeling and listing things (for example, I told her how she talks about school and she will go down the list of kids, teacher/aides, etc. "I ready to see Olivia, I ready to see Jason, and Ryan, and Miss Lauren, and Sabrina..."), she cannot have a back-and-forth conversation yet, etc. Also, her social skills are still way behind. She also pointed out that even though she is not flapping anymore, she is turning that into something else, like her fingers overlapping (what I call the lobster claw hand --a strange thing she does with her index and middle finger) or clenching her fists like she is upset or anxious.

In terms of the behavior issues, she asked if we've had a functional behavior analysis (FBA) done before and I said no. She said that Katelyn's behavior is out of her realm (and she's a top expert on autism!) and that we definitely need to get an FBA done as soon as possible. This will involve having a team come to the home and school environments to observe what is going on and take data and attempt to implement some strategies for us to use. She agreed that Katelyn's behavior is very puzzling and hard to figure out. She suggested possibly negative attention seeking behavior, but also recommended genetic testing because some genetic disorders can cause regression like this, especially the all of a sudden not showing interest in previously enjoyed things or activities. I told her that some genetic testing was done around the time of suspected seizures back in Jan 2009 and she said she would like to see the results from the neurologist. She does not think it is a yeast/bacteria issue related to the pneumonia/antibiotics because she said, in her opinion, that there is no way it would last this long. She emphasized the importance of consistency on the part of her parents, teachers, and caregivers. She even mentioned that this is serious enough that if we do not get help for her now, Katelyn could end up having to go to a special school or even in a residential program somewhere, NOT because of her autism or lack of cognitive skills, but because of her behavior. If that isn't serious, I don't know what is. She did agree that it sounds like this is something other than the autism going on in addition to, and probably made worse by, the autism.

So, that is where we are at so far. Now we have to wait until April 1st (date was changed) for her evaluation. I also got her an appointment with a child psychologist for next week, so hopefully she will be able to help us in the interim with how to try to deal with her behavior at home, as well as at school.

Thanks for all of the good thoughts and prayers in this difficult time. I will be sure to keep you all up to date on what is going on in this reevaluation process.

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.

Seizures or Stims? Let the Fun Begin...

Now that we officially have the autism diagnosis, it appears that the "fun" is just beginning. Katelyn originally had a neurology appointment scheduled for the end of February to simply rule out seizures since they can be common in children with autism. When I made the appointment, we really did not suspect that she was having seizures, but we knew it was imperative that we rule it out. However, she has been exhibiting some concerning behaviors lately, so I mentioned them to the doctor at the autism diagnostic center on Monday when she went over Katelyn's diagnosis. She recommended that we get Katelyn evaluated by a neurologist sooner, if possible, since she said that some of the symptoms she is experiencing are concerning to her.

So, being the proactive mother lion that I am, I called the neurologist's office and told them that we could not wait; she needed to be seen ASAP. They gave us an emergency appointment today, but unfortunately it was with an adult neurologist, not the pediatric doctor that we were originally going to see. Regardless, we felt that it was more important to get her evaluated as soon as possible.

We met with the neurologist today and explained the different things we have noticed lately with Katelyn, including strange mouth and tongue movements accompanied by staring spells, crying and confusion, as well as what appears to be regression (she has lost many skills that she used to do independently; for instance, she is refusing to eat unless we physically put the food in the back of her mouth, and even then she will push it out like a 3-month-old does when first learning to eat; she wants to be carried everywhere and will no longer walk down stairs; she no longer has any interest in her toys, TV shows, etc., and basically just calls for "mama" all day long, even when I am holding her; and she will not enter certain rooms anymore.)

The neurologist seemed quite concerned, but admitted that she is not a pediatric neurologist, so she consulted with a pediatric epileptologist from a top Boston hospital. After she explained our concerns to this specialist, he said that Katelyn needs to be started on a low dose of Keppra, an anti-epileptic drug, right away in case she is having seizures. They also will be scheduling her for a 24-hour EEG study to look for any seizure activity, and also to rule out Landau-Kleffner Syndrome. Unfortunately, there are waiting lists to get 24-hour EEGs scheduled, often more than a month, but in accordance with the Boston specialist's recommendation, Katelyn's order was filed as urgent, and we are supposed to receive a call from the hospital within the week to schedule the EEG.

So, needless to say, we are now in the midst of what feels like an autism tornado. It is quite obvious why the symbol for autism is the puzzle piece. Unfortunately, putting together this puzzle, and searching for the missing pieces, is going to be a lifelong project. It's a good thing that Kevin and I enjoy puzzles. Katelyn sure is a mystery, but we wouldn't trade her for the world.