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...

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.

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.

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.

I Finally Have My Girl Back...

For the past few months, Katelyn seemed to be slipping away. She would no longer feed herself independently, watch her favorite TV shows, play with her toys, walk up and down stairs, etc. She even stopped singing and clapping. Overall, she seemed very unhappy, as if she was locked inside herself and couldn't break out. But with some help, Katelyn has returned.

Since it wasn't clear if she wouldn't, or simply couldn't, do certain things that she used to do, we were not exactly sure how to handle the situation. If she truly could not do these things, it would not be fair to her for us to try to force her to do so. However, if she was just choosing not to do certain things, this would be a behavior issue that could be corrected.

Exactly one week ago, I decided it was time to try to break Katelyn free, if possible. For some reason, she would no longer enter our kitchen for the past few months, so I decided to start there. I also wanted to tackle the self-feeding issue since she was only eating if I shoved the food into her mouth. I already have an 8-month-old who cannot self-feed, so as you can imagine, having to feed my 2.5-year-old as well was time-consuming and exhausting.

So I picked Katelyn up and brought her into the middle of the kitchen. She was not happy, but she lied down on the floor. I got out one of her favorite snacks and put them in a bowl. She really wanted the snack, but she got very upset that I refused to put them in her mouth for her. I held the bowl and told her that she needed to take them out herself. She began to cry and protest, hoping that I would give in. However, after enough time went by, she finally took one out and shoved it in her mouth reluctantly. It was like a battle of wills, not against me, but against herself. I praised her a ton and then I put the bowl down on the floor, no longer holding it for her. Once again, after some tantruming, she finally took one out of the bowl. Again, more praise. All in all, it took an hour and a half to get her to successfully feed herself, but it was worth every minute. This was a huge breakthrough!

I then decided to see if she would feed herself at the coffee table, since she had been refusing to even go near it for months. I put the bowl on the table and turned on Blue's Clues. With some prompting and reassurance, she finally went over to the table and fed herself. I praised and praised her. She became very excited to receive the praise. I could see the pride that she felt. It was then that I knew that she was not incapable of doing things that she once did, she just lacked the confidence. It was like she just got stuck in a rut and didn't know how to get out, but I opened up the door for her. Finally, my happy girl was back!

As if a magic switch had been turned on, Katelyn quickly resumed to many of her old activities. She now walks up and down the stairs completely independently, feeds herself (she even used a fork and spoon tonight and she did well!), doesn't require Mama and Dada to be in the same room with her all of the time, and she even has been incredibly sweet with her baby sister. She is constantly laughing and smiling, and you can just see the difference in her. Also, her language has just exploded and she is actually starting to form sentences! And to think, just a few months ago, we weren't sure if she would ever say more than one- or two-word phrases.

Also, her ABA therapy started last week and Katelyn is doing amazingly well. She already has a bond with her ABA therapist, Aimee, and she is enjoying the one-on-one sessions. And now that she has the language skills, we are able to see just how smart she truly is. She continues to amaze me every day.

Katelyn has taught me many things in her short life so far, but one of the most important lessons that I have learned is to cherish the small accomplishments and never take anything for granted. When you have a child with autism or developmental delays, you really hold onto the little successes, and if and when your autistic child reaches the "normal" milestones, even if it takes months or years longer than other children, it is truly euphoric. It is almost like witnessing a miracle because it isn't definite that your autistic child will ever do some of the things that other children do naturally. After witnessing, and being a part of, Katelyn's recent breakthrough, I feel on top of the world. I finally have my girl back, and I am never letting her go.

The Verdict Is In...

Kevin and I met with the doctor at the autism diagnostic center today to discuss Katelyn's official diagnosis. She has been diagnosed with Autistic Disorder (classic autism), and she is considered in the moderate range right now. In order to be diagnosed with autism, a child must meet 6 of the 12 criteria, and Katelyn met 9 out of 12. However, the doctor did explain that meeting more criteria does not necessarily mean that the child is more severe; it depends on which of the criteria is met.

The doctor feels strongly, as do we, that Katelyn will be very successful with intensive therapy (25+ hours per week, including ABA, speech, OT, and more), and that she will most likely improve significantly. She said that she would not be surprised if Katelyn is considered mild within a year.

What happens now?

The next step will be getting her set up, through her current Early Intervention provider, with a specialized team that will provide the intensive therapy. When Katelyn turns 3 in July, her services will then be provided through the public school system. When I asked whether Katelyn would be in a regular pre-school classroom with an aide, the doctor explained that, because of her speech issues, Katelyn would benefit most from a 1:1 or 1:2 ratio, and then once her speech improves significantly, she could be integrated for part of the school day in a regular pre-school classroom with a 1:1 aide. I also asked about what will happen over the summer since she turns 3 in July, but pre-school does not start until the fall. The doctor said that Katelyn will need to receive year-round services (so there will be no gaps in her therapy), so she will need to be involved in a summer program through the school as well.

The doctor also highly suggested that Kevin and I become involved in a support group for parents of autistic children, which is something that I plan to look into further. I already frequent an online support forum (www.autism-pdd.net/forum), which has been unbelievably helpful.

Thank you to everyone who has been following my blog. This is going to be a lifelong journey for us, and having friends and family (and even internet "strangers") who offer support, experiences, hugs, and more, really means the world to us.

Let the Testing Begin...

We are having Katelyn tested at a top autism diagnostic center. We met with the doctor on Monday for the parent interview. The next step is to have Katelyn evaluated, but it may not be until January :( We are contemplating meeting with one of the interns since they would be available sooner than the doctor.

The most important thing right now is that we get a diagnosis. Once we have the diagnosis, Katelyn will get SO many services to help her, such as ABA (applied behavioral analysis) therapy and more.

We have also added a developmental educator and an occupational therapist to her Early Intervention plan, so now she will have speech, dev. ed., OT and play group weekly. We have also bought her flashcards and speech videos and she is adding more words to her vocabulary on a daily basis! We are doing all that we can to help her in the interim while we wait for the evaluation.