"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)

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.

So Far, So So...

Katelyn has been in the partial hospital program for almost 3 weeks now. She likes the staff and seems to look forward to going there, but she is still struggling in many ways.

After observing her and collecting data from her family, teacher, and diagnostic tests, it has been determined that she is suffering from a severe anxiety disorder and most likely depression as well. There is most likely something else going on here in addition, but right now the focus is to alleviate some of her anxiety since she is in an insurmountable amount of distress, which is making it impossible for any other behavioral interventions to have an effect at this time. Therefore, last Tuesday, after careful consideration by her psychiatric team and family, and weighing the pros and cons, we agreed to a trial of low-dose Prozac to hopefully help get her level of anxiety to a more manageable state. This was an extremely difficult decision for us, but at this point, all other avenues have been exhausted and it is clear that nothing is going to be able to help her until we get her anxiety under control. Now, we just have to wait and see if it has an effect, which could take weeks.

We have seen some improvement in certain areas, but she still has a very long way to go. She has shown some interest in activities lately, such as doing puzzles or building towers with giant Legos. However, she still requires a significant amount of adult direction and encouragement to become engaged in most activities. She also has been smiling and laughing more, and even showing some interest in being silly with Ashley, although she is still aggressive towards her at times. Unfortunately, she is still perseverating constantly, even worse than before, asking for things over and over and over and over again for hours on end, and then screaming or becoming aggressive when she does not get immediate gratification.

Because she is so unstable at this time, we have decided to postpone her reevaluation at the May Institute until she is better able to demonstrate her true potential and capabilities. At this point, we honestly are questioning whether she truly has autism or if this is something entirely different masking itself as autism because some of the behaviors that she is demonstrating (i.e. her awareness of how her actions affect others, doing things "out of spite," etc.) are not consistent with an autism diagnosis. Even the director of the program stated that he does not feel that she presents with classic autism symptoms at this time, which is what her diagnosis currently is. Although she does exhibit many "red flags" for autism, he feels that we will have to wait and see over time how it all plays out to determine if she truly has autism or just some characteristics. So we will definitely be having her reevaluated at the autism diagnostic center when appropriate.

At this time, it is unclear how many more weeks she will be in the program, but we are trying to be optimistic that she will continue to make improvements. We are hoping that we will see significant progress once the Prozac takes effect since she is still being tormented by the level of distress that her little body and mind are experiencing on a constant basis, which is also taking its toll on our entire family. I'll continue to provide updates when I can. Thank you all for your continued support, love, and prayers.

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.

It's Beginning to Look a Lot Like Christmas!

Last week, my mother, grandmother, and I decided to brave the idea of taking the girls to get their picture taken with Santa. Last year, it was not a good experience and, as you may recall, I had to sit in the picture, which was completely unplanned (hence my clashing outfit, no make-up, etc.). I was determined that there was no way I was going to be photographed this year!

I had prepped Katelyn to see Santa days before so that she would hopefully not be scared of him. She was excited to see "Santa's house" and she practiced her smile with Mimi (my mother) all morning long. What I didn't expect was that Ashley would be the one who would be completely freaked out!

As soon as we arrived at the mall, Katelyn was talking about Santa. She was excited to see the big tree and all of the decorations around Santa's chair. She needed no encouragement to come say hi to Santa and to give him a high-five. Ashley also came over fairly willingly to give Santa a high-five. However, it got interesting when I tried to put Ashley on his lap. That is when the wailing began! She was not having it!

And then poor Katelyn got a little freaked out (no tears, though, thank God) and stood back from Santa and said, "All done Santa." Santa then brought out two gift boxes for the girls to sit on instead of his lap. Katelyn sat on the gift box with no hesitation. Ashley, however, refused and tried to run away. I decided to sit on the box and have Ashley stand in front of me. This worked and Ashley stopped crying. I then told Santa (and the photographer) that I was NOT going to be in the picture. Santa disagreed. He told me that there was no way the kids were going to be okay with me leaving.

Recalling last year's photo, I reiterated that I was not going to be in the photo. I told the photographer to let me sneak out before snapping the picture. Somehow, I managed to "sneak" my 8-month-pregnant body out from behind Ashley without her noticing and I quickly ran to hide behind some props. Miraculously, Ashley didn't budge and the photographer was able to snap the photo. I couldn't believe it!

After we were done "torturing" Ashley and I was choosing the photo package, Katelyn stayed with Santa, talking up a storm about her beloved Giraffe. I wish we could have gotten a picture of this moment. It was so sweet seeing her have a conversation with Santa. She has come so far in just one year and we have so much to be grateful for this holiday season.

Katelyn's 3-year professional photo session...

With much anxiety on my part, we took Katelyn for her 3-year professional pictures back in July. Since our experience at her 2-year and Christmas 2008 sessions did not go well, I was expecting a full-blown screaming meltdown to take place where we would be lucky to get any pictures taken, never mind any decent smiling pictures. However, our little girl surprised us in a very big way! It was the best photo session EVER for Katelyn! She laughed and smiled the whole time, unlike all other previous photo sessions where it was like pulling teeth. I even notified the photographer at the beginning that she has autism and that she may scream and melt down, and at the end of the session, the photographer said she never would have known that Katelyn has autism and that she was such a pleasure to work with. Talk about making my day!

Katelyn has come so far already in just a few months and we are beyond hopeful that her progress will continue.

A month and a half later, I am finally getting around to uploading these photos *blush* ;) These photos are untouched before we had any enhancements and borders added.

It's Been Way Too Long...

It has been quite a few months since my last update and there is so much to catch you all up on. First, I am currently 17 weeks pregnant with our third child, which is the main reason that I have been missing in action due to morning sickness, or in my usual case, 24-hour-a-day sickness. We are hoping for a boy this time and will find out September 1st.

As far as Katelyn goes, there is so much to say that I will inevitably forget something, but I will do my best to remember everything that has happened over the past few months.

You are what you eat...
We started Katelyn on the gluten-free/casein-free diet (GFCF) back on April 28th, which basically means that she no longer eats wheat (and some other grains) or milk products. There is a lot of information on the Internet about the GFCF diet and how it has been shown to help many children with autism. There is a whole science behind the diet that I find fascinating.

After researching and talking with other parents of autistic children who have seen positive results, we decided it was worth a shot. Some of the immediate improvements that we noticed shortly after implementing the diet were less "stimming," a significant increase in speech and language skills, improved behavior (specifically less aggressive behavior towards Ashley), increased social awareness and interaction, increased focus, and a happier demeanor overall.

It certainly was not easy to start the diet, but once we found substitutes for her favorite foods, it definitely got easier. And for those of you who think that your child would "starve" if you tried this diet (I used to feel this way!), just know that the kids who are very picky and only eat certain foods, especially those who limit themselves to gluten and milk products, are usually the ones who will benefit from the diet the most. Of course, vitamins and supplements need to be implemented in order to ensure that certain nutrients, such as calcium, are not deficient.

A few of my favorite sites are GFCFdiet.com, TACA.com, and of course my favorite message board, which has been a lifesaver in so many ways. I also highly recommend the book, The Kid-Friendly ADHD and Autism Cookbook, which not only explains the scientific reasons why the diet works, but offers many great recipes!

Let's get things moving...
Katelyn had been having chronic diarrhea for months, so we decided to take Katelyn to a pediatric gastroenterologist just to be sure that there was nothing serious going on. Well, it turned out that she was severely impacted all the way up to her stomach, and the doctor said that she was probably like that for six months! He then performed an upper endoscopy and colonoscopy, took biopsies, and cleaned her out completely. His immediate suspicion was celiac disease, but he needed to wait for the results of the biopsies.

Two weeks later, we went back for followup and found out that she does not have celiac disease, but she is lactose intolerant. Also, an x-ray revealed that she was once again impacted all the way up, despite being completely cleaned out two weeks prior. The doctor said that it appears that she has very slow motility of her bowels, or that they simply do not "move" like they should. He prescribed Ex-Lax and Miralax to help her bowels function properly. Two weeks later, we returned and discovered that although she was still impacted, it was not as severe as previously, so the doctor is hopeful that the medicine regimen is working and asked us to return in one month, which will be in September.

On the same page...
We had Katelyn's IEP meeting (special education) for preschool back in May and it went extremely well. The school offered us everything we were looking for and are completely on the same page as us when it comes to our concerns for Katelyn. They also agreed to contract with one of our existing ABA providers for the summer, which has been great! We couldn't be happier with our relationship with the school thus far!!!

The wheels on the bus go round and round...
Katelyn attended preschool for the summer session and it was a great success! There were two sessions offered, one specifically for kids with autism and one "regular" classroom that included kids with IEPs. It was decided at her IEP meeting that she would benefit the most from the regular classroom rather than the autistic classroom because she is so verbal now and she has already come so far with her ABA therapy. Katelyn really enjoyed the summer session and loved riding the school bus! She asks for school (and the school bus) all of the time and is excited to go back! I'm excited for her to start school in the fall also!

In September, she will be attending the same preschool full-time with the same teacher, who is absolutely amazing! She will spend some time in a small group setting and then other times in a larger "regular" classroom with peer models. We are very optimistic that she will have a successful school year!

The Sky is the Limit...

Since the end of January, Katelyn had been getting 7.5 hours of ABA per week. We were on waiting lists for a few different ABA providers, hoping to get more hours added. However, it never seemed to pan out.

Then one day I met another local mother at Katelyn's EI playgroup. Her son also has autism, so we began talking about therapies. I mentioned that Katelyn was only getting 7.5 hours per week, despite the fact that it was recommended that she have 20-25 hours per week (and there have been studies that have shown that 20 hours minimum is the "magic number" for ABA to really be most effective). She gave me the information for the ABA provider that her son uses and she said to give them a call since they had offered her a ton of hours from the start. I immediately called them when I got home and asked if they had availability. They were very responsive and were out within a few days to do an intake on Katelyn. Shortly after, they came out and did an evaluation to see what areas they would need to work on with Katelyn.

Because we absolutely love Katelyn's original ABA therapist, I mentioned to her the fact that we were going to be adding another provider to work with Katelyn, but that we wanted to definitely keep her on as well. She spoke with her director and they actually ended up offering us a few more hours with another therapist also!

So, all in all, Katelyn is now receiving 26 hours per week of ABA, in addition to her 1 hour of speech therapy, 1 hour of occupational therapy, and 1 hour of developmental stimulation through EI. This is a HUGE increase in services and we couldn't be more pleased. And now she has a total of 7 therapists!

She has come so far in such a short time with just the 7.5 hours per week, so we can only imagine how high she will soar now that she is getting even more help. The sky is the limit.

Making Music Together...

Since Katelyn loves music and craves rhythms and movement, I have been looking for a music and movement class for her to attend. I had asked around, but no one knew of any local classes. However, after a very quick Google search, I stumbled across a listing for a Music Together class, and the best part about it is that it is right down the street from our house! Also, it is offered at 9:30 on Monday mornings, which is when she normally has her Early Intervention playgroup, but since she will be starting the Tuesday transition playgroup next week, she will no longer need the Monday playgroup. So we are free to take the Music Together class!

The next session starts in April, but we were allowed to try a free demo class this morning to see how Katelyn liked it. Needless to say, she LOVED it! The instructor played the guitar and she also played songs off of a CD. The songs were really fun and the kids really got into the movements. The children also played with a variety of instruments, including bells, tambourines, drums, and more. Most of the class consisted of all of us getting up and moving to the music, walking around in a circle, pretending to be doing certain activities like driving a car or hopping like a bunny, etc. It was really, really great! There was also opportunity for Katelyn to interact with other children, including rolling a ball back and forth, which is a social skill that Katelyn really needs right now. Katelyn even ran to the instructor and sat on her lap and gave her a hug! And she was also approaching other children and parents and saying hi. It was like a miracle! This class couldn't be any more perfect for Katelyn!

After the class was over, the instructor asked if I had any questions. I informed her that Katelyn is autistic and she said that she has had a lot of experience teaching music to autistic children. She also commented that she never would have guessed that Katelyn was autistic because she had excellent eye contact and was very outgoing. Hearing someone tell me that she couldn't believe Katelyn is autistic was the most incredible feeling. Katelyn truly is improving more and more each day, and it is almost scary how rapidly it is happening!

Since Katelyn had such a wonderful experience today, I asked if it would be possible to join the current session instead of waiting until April to start. The instructor said that normally they do not allow this, but that she would make an exception since she could see just how much Katelyn loved the class. She also said that she could tell that Katelyn is very musical. She pro-rated the current session for us since there are only three classes left, and she even came to my house and dropped off the songbook and CD! I also signed Katelyn up for the next session, which is from April to June.

I am so excited that Katelyn will be involved in an activity that she truly will enjoy and learn from. Music is her biggest strength and most cherished interest. We need to cultivate her love of music, and also provide opportunities for social development, so that she can continue to blossom. I believe that this will be an experience that will stay with her for a lifetime.

A Whole New World, A Whole New Girl...

Now that Katelyn is back in this world, she is improving so much, and in so many areas. Her speech is flourishing, her play skills are growing, and even her social skills are developing more. She actually initiated play and "conversation" with her cousins, Anthony and Lexi, who are 8 and 4, respectively. She usually follows their lead, and she normally does not approach other children, so this is a huge step! I am hopeful that she may initiate play with other children, especially peers her own age, since she usually does not even acknowledge their presence.

And she also has been incredible with her baby sister, Ashley. She loves to be around her, share toys with her, talk to her, sing to her, and more. And Ashley absolutely adores Katelyn. It is truly beautiful for us to witness this since we weren't sure if Katelyn would ever have a special bond with her sister.

Katelyn will be attending a new playgroup on Tuesdays, starting in early March, through Early Intervention. Unlike her Monday playgroup where the parents stay, at this playgroup the parents attend a separate meeting of their own in another room. This is specifically designed to help children get ready to transition to the pre-school environment. I am ecstatic about this opportunity and I believe that Katelyn will really benefit from this experience.

Katelyn has been doing wonderfully with her ABA therapy. Aimee, her ABA therapist, said that Katelyn is so bright that she is breezing through all of the programs so quickly that she is having to find other programs to do with her! This obviously brings a huge smile to her family! We couldn't be more proud of her. Aimee said that Katelyn is very academically smart, so we are going to focus on her behaviors and social skills, as well as providing more challenging academic work as well. And of course, being the mathematician that I am, I am really excited that she loves numbers and already counts up to 10.

Overall, we have seen a drastic improvement in Katelyn recently, and this gives us hope that she will be very successful academically and hopefully socially. But the most important thing to us is that she is happy, and with each success, she is gaining confidence, independence, and most importantly, happiness.