Results From Neuropsych Evaluation...

This past Wednesday, we met with the neuropsychologist for the feedback session to discuss the results of Katelyn's recent neuropsych evaluation. The doctor confirmed that, in addition to PDD (autism spectrum), Katelyn DOES have psychosis. She said that it is still too early to determine a specific diagnosis, such as schizophrenia, but that she is definitely responding to hallucinations, or what the doctor preferred to call "extra-sensory experiences" that make Katelyn afraid and do bad things. At this point, she will keep the PDD diagnosis, but her diagnosis could change in the future since childhood schizophrenia and PDD have many overlapping symptoms. The doctor talked about how rare childhood psychosis is, and then when you couple it with PDD, it is even more rare to see this in a child her age (5 years old). She also talked about Katelyn's extreme level of anxiety, which we already were aware of. Who wouldn't be anxious with what she is going through?

Even though this has been suspected for quite some time and I knew in my gut that Katelyn was having hallucinations, it is a bittersweet feeling to finally have confirmation. Having been told by so many "professionals" in the past that, "Oh, that is just autism," it is reassuring and validating to finally have doctors agree that this odd behavior is NOT autism at all. However, it is still difficult to hear that your child truly is suffering from psychosis. It doesn't change anything about how we all love Katelyn and who she is; it just means that we will need to continue to fight harder and harder to ensure that she gets all of the services she needs to reach her fullest potential. It will be a life-long journey for her, but we will all be here to help her navigate through her perceived world and reality.

Thank you to all of you for your support over the years.

Another Video of Katelyn...

Here is another video of Katelyn I put together to hopefully help her doctors to determine what is going on with her. It is less than 10 minutes long, but shows a pretty good amount of her odd behaviors and language. There is no question this is not a characteristic of her autism, but it is becoming more apparent as she gets older that it could be psychosis/hallucinations.

Up, Up, Up and Away...

We met with Katelyn's developmental pediatrician yesterday to discuss medication options. Her doctor decided to try one more increase of the Risperdal, stating that this will probably be the last time and we may need to try another med if this is not effective. She increased her morning dose to 1-1/2 tablets and kept her evening dose at 1 tablet (0.25 mg). We are hoping this does the trick since she has not had any adverse reactions to the Risperdal so far.

This Saturday, Katelyn will complete the last 2-hour session of her neuropsych evaluation and we will meet for the feedback appointment on 12/7.

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.

"Where There Is Great Love, There Are Always Miracles"...

Since my last post, Katelyn has had significant ups and downs. Back in June, she was again admitted to the PPHP program due to her severe aggression and self-injurious behavior. She was placed on Zoloft and her Risperdal was increased. She was then discharged in mid-July and she returned to her preschool for the last few weeks of the summer program. During this time, she had significant difficulties both at home and at school.

After the summer session ended, there was a 4-week break, during which time she was showing significant regression in terms of her behavior. It was quite apparent that she could not deal with breaks in her schooling, as evidenced by her PPHP admissions and 3-week stay at Children's Hospital, all occurring after school breaks. At this point, we were considering out-of-district placement to a school that would specialize in dealing with children similar to Katelyn, exhibiting both characteristics of autism as well as psychiatric issues. Her psychologist, developmental pediatrician, primary care physician, and neuropsychologist were all in agreement that there was sufficient reason to believe that she could no longer function in a public school setting, and out-of-district placement was recommended.

I met with the school to discuss our concerns, and they were very concerned as well. They have been wonderful to Katelyn and her family throughout all of our struggles, and they truly care deeply for her. The school psychologist and adjustment counselor became part of her team and we decided that it was worth giving it another shot at her preschool since that is the ideal place for her, if possible. Her teacher suggested that all members of her team be included on an email list so that we can all be on the same page and communicate about Katelyn's treatment, which has helped tremendously. And, boy, did Katelyn surprise all of us!

Expecting the worst, we were shocked to hear that she did well the first few days of school, and even enjoyed taking the bus again! We were still cautious, wondering if the "honeymoon period" would end like it almost always did, but it has continued! And I am so happy to report that she has drastically improved ever since! She is now playing with Ashley on a daily basis -- they are like best friends now, with the occasional fight, but nothing out of the ordinary for "typical" sibling rivalry. Just weeks before, she wasn't even able to be in the same room as Ashley, and sometimes not even on the same level of the house, without having a complete meltdown. Now she gets upset if she can't be with Ashley!

Who knows what the reasons are for her significant improvements -- perhaps her medication, perhaps the hard work and dedication of her family, school staff, and therapeutic supports, perhaps the fact that we turned our dining room into a play room, perhaps a sudden developmental growth on her part, perhaps all of the prayers and love that so many people have shared with us -- whatever the cause, it is a true miracle.

We have seen what Hell is like, believe me. But having gone through all of the difficulties over the past year, and coming through them alive and intact, we've grown stronger, and we will never, ever give up hope, no matter what obstacles may come our way in the future. We now have a taste of Heaven and we will never let it go.

(Quote by Willa Cather)

It's Good to be Back...

Katelyn was officially discharged from the PPHP program on Monday. The staff had a little going away party for her while I met with the doctors to discuss her discharge plan. The kids sang a goodbye song to her and then it was time for her to leave her permanent mark in the form of a yellow painted hand print on the wall. After four and a half weeks in the program, it was now time to complete the transition back to her preschool.

The week went fairly well overall. Her teacher reported that Katelyn seems very happy to be back, but that she definitely requires constant attention, which we completely expected. Because of this need, the school has provided her with a 1:1 aide in the classroom. I am also driving her to and from school because we are concerned that taking the bus could cause more anxiety for Katelyn at this point, despite the fact that she really enjoyed it in the past. We will be meeting with the school on Tuesday for her IEP meeting to further discuss her current needs and to make sure that all appropriate services are in place.

Her teacher and other support staff are very happy to have Katelyn back, and we are so glad that she is back in her preschool classroom that she loves so much!

Here are some photos from her last day at the PPHP program:

Let the Transition Begin...

Katelyn has been in the partial hospital program for 4 weeks now. She seems to be adjusting well to the Prozac, so the doctor decided to increase the dose slightly, which we did on Tuesday night. Her level of anxiety is still quite high, but it has only been a little over two weeks since she started the medication, which can take much longer to reach full effect. It does, however, seem to be helping with the depression aspect. So far, we have seen some significant improvements in terms of her ability to enjoy things, laugh, and smile, and she is now showing some interest in previously cherished objects, including Giraffe (although not anywhere near the extent that it was before). She is slowly becoming more tolerant of other children it seems. Normally, she would lash out and hit another child for getting too close to her, but now she is occasionally allowing another child to give her a toy or even a hug. She is also smiling at other children a little bit and saying "hi" spontaneously.

We are seeing an increase in spontaneous screaming, and she has been getting very hyper and overstimulated lately, so we are going to keep an eye on this because it could be a side effect of the medication. However, if we have to choose between a hyper child and a depressed child, we would much rather have the hyper child who is able to laugh, be silly, and enjoy things once again, as long as it doesn't interfere with her ability to function at home and school.

Because we are starting to see some improvements, we have decided to attempt to begin a transition back to her preschool. This past Tuesday, her teacher came to visit her at the day program. Today, she is going for a half-day at her preschool and her therapist from the day program is going to be there to assist in the transition, and the same will happen on Monday. If all goes well, she will be discharged from the hospital program on Tuesday. We will be meeting with the school the following week to discuss her current needs (since they are very different than they were previously) and write up a new IEP to ensure that all of the necessary services are in place for her as soon as possible. We are looking forward to getting her back to her preschool with her wonderful teacher, principal, and therapists, who have all given us a tremendous amount of support and guidance throughout this whole ordeal. They truly love and care about Katelyn and we couldn't be more grateful to them.

Although we are seeing some positive changes, she still has a lot more to overcome. It is going to be a long road, but with support from professionals, family, and friends, we are confident that we will get our beloved Katelyn back to where she needs to be.

And a New Journey Begins...

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

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

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

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

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

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

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

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

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.

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!

More Than We Bargained For...

It is a good thing that I did not bet money on how Katelyn would respond to getting the electrodes stuck to her head because she did way better than I had anticipated! Of course, she was not happy about it, but after the first few minutes, she did great and no sedation was required. The nurses and doctors were all amazing throughout our stay. They brought in some toys for Katelyn, one of which was a tube with beads that sound like rain when they fall. This became her "go-to" toy whenever anyone was going to mess with her head (no pun intended). She would shout, "Beads! Beads!" and we would quickly distract her with the bead tube. They also wheeled in her very own DVD player so she could watch Dora as much as she wanted to, much to our chagrin :)

Things definitely did not go as planned from the get-go; there were some good and some bad surprises. They did allow Kevin to stay with me, which was a huge relief for me. Even with the two of us there, it was still not easy to be stuck in a tiny hospital room with a 2.5-year-old who demands 24-hour attention from Mama and Dada. The food was obviously not meant for human consumption, so that was quite disappointing. We ended up living on ice coffees and donuts for the most part since there was a Dunkin' Donuts in the building, thank God.

Our 24-hour EEG turned into an exhausting 72-hour EEG because, despite the fact that Katelyn was exhibiting concerning behaviors multiple times a day prior to hospitalization, she did not demonstrate even ONE single event while admitted. Isn't it ironic (insert sarcastic smiley face here). The neurologist wanted to be sure that he did all that he could to attempt to witness any seizure activity, but unfortunately it never occurred. Therefore, we are still not 100% sure that she is not having seizures, but it certainly is promising that she did not show any signs of seizures while under observation. We were really hoping that she would do that strange behavior, even if just to rule out that it is a seizure so we would know for the future, but the good thing is that she has not had one of those events since, so we are optimistic for the moment.

As if being in the hospital for three nights with a 2.5-year-old wasn't enough, the worst was yet to come. Shortly after we put her down for the evening on the last night, Katelyn started throwing up all over herself. Even poor Giraffe got his fair share. She continued to be sick until around 1 a.m., but then finally slept the rest of the night. The next morning, the doctor told us that they wanted to keep her for a few hours after her electrodes were removed, just to be sure that she was okay since she had vomited the night before and there was a GI bug going around the floor. Right as we were about to be discharged, the nurse checked her temp and it was 102. The doctor said that he would keep her if we chose, but we were so sick of being in that hospital that we decided to take her home. Unfortunately, she threw up all over herself in the van when we were only a few minutes from the house.

The next morning, I ended up becoming violently ill, and by that evening, Kevin was also extremely sick. Neither one of us were in any condition to take care of ourselves, let alone Katelyn, but we did what we had to do, even when she woke in the night vomiting again. Luckily, Kevin's parents were gracious enough to keep Ashley so that she would not get sick too. We finally seem to be on the mend now, and Ashley is finally home with us after being at Grammy and Papa's for a week.

So, all in all, it certainly was not a dream vacation, and we didn't get any concrete answers, but at least it was memorable. I'm sure we will look back and laugh at this some day.

Giraffe and Dada got "hats" too...

Katelyn lined up her animals and played with balloons...

With Mama when we arrived/with Dada on the last day...

Boston Medical Center, Here We Come...

I was not expecting to hear from them this soon, but the hospital called this morning to get the ball rolling for Katelyn's 24-hour EEG. It will take place next Wednesday! We have an appointment for a neurological evaluation at 10am and then she will be admitted for the procedure. The pediatric neurologist who will be doing the procedure sounds wonderful, and he has experience specifically with autism, which makes me feel very comfortable.

We started Katelyn on the low-dose Keppra and so far she seems to be tolerating it. She actually seemed to be able to focus more and was actually interested in playing and interacting today, which is a very good sign. She also did not appear to have any of the strange facial movements that we suspect could be the seizures, but she did cry spontaneously and thrash around a little bit from time to time, for no reason that was obvious to me. I really hate the idea of having to medicate her, especially since we are not even 100% sure that she is having seizures, but we have put our trust in the doctor. Hopefully we will be able to get some answers after the testing next week.

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.

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.

Katelyn's Evaluation...

Finally, we have an answer -- well, at least a partial answer to the main question that I was so desperately needing to hear.

Katelyn has autism. My daughter has autism. Finally I know, and I can breathe.

After months of worrying that the doctor would not see the signs that I knew in my heart were there, the doctor reassured me that she is indeed on the spectrum. Upon hearing this news, I thanked the doctor over and over, and I told her that she didn't even know how much weight she had just taken off of my shoulders. I know it must sound strange to think that a mother would be relieved, even happy, to hear that her daughter has autism, but when you have known in your heart and your gut since your child was a newborn that something was different with her, all you want is validation for those feelings, along with knowing that your child will now receive special services to help her be as successful as she can be throughout her life.

I am not one to cry about anything, even devastating news, but I cried the entire ride home. I was so overwhelmed with the relief of hearing the answer disclosed, even though I had known 100% all along that it was true. Hearing those words, "Katelyn definitely is on the spectrum," took away all of the heartache and worry that I had been holding onto for months, fearing that they wouldn't see what I knew, fearing that she wouldn't get the help that she needs.

We will receive her official detailed diagnosis on January 12th, which will outline exactly where she falls on the autism spectrum, and what specific services she will need.

Now, the journey truly begins.

Bad Day at the Office...

Yesterday was Ashey's 6-month doctor visit. I didn't expect there to be a problem since the appointment was for Ashley and not for Katelyn. Boy, was I wrong!

Katelyn started out okay for the first few minutes, but then she saw a man sitting in the waiting room and said, "Hi Dada." He laughed and I explained that she calls all men "Dada." Well, then she proceeds to run to him saying, "Dada!!!!!" I go get her before she leaps on him and at first she is laughing. Then she goes into a fit of RAGE! She started screaming at the top of her lungs -- I thought the windows were going to crack! She was flailing, kicking, punching, screaming "Dada!!!!!!!!!!!!!!!" and she even resorted to biting and clawing me. I was holding both of her arms so tight and she was fighting me, which was so hard. She kept screaming for Dada, but I was trying to explain to her that it wasn't Dada. He didn't even look like him! The man felt awful.

This went on for over a half hour, with the entire waiting room just looking in disbelief. I almost lost my mind. I told myself I had to keep calm because if I lost it in public, it would do no good for anyone. Finally, they called Ashley's name. I was about to go to the window and see if they would please take her sooner since Katelyn was having the worse meltdown she EVER had, and in public.

It felt awful to have her go through this, and it was certainly embarrassing to me since it happened in public, although at the time I tried really hard to ignore all of the stares. The worst part of all was that I realized that this was only the beginning -- there will most likely be MANY more days like this, and many more stares to ignore. That makes me so sad, not for me, but for Katelyn. Hopefully once she gets her diagnosis, we can proceed with therapies to help her (and me) in these situations.

Needless to say, I will never take the 2 girls to the doctor's office by myself again :)

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.

What We Saw When We Started Looking...

Once we knew what to look for, the signs started jumping out at us. Since she is our first child, we just assumed that many of the signs were typical of a 2-year-old. And many of the signs ARE present in NT (neurotypical) children, but it is when you put them all together that it starts to look like autism.

There are way too many things for me to list here, but here are just a few examples of why we believe she is on the spectrum:

• Significant speech delay
• Occasionally appears deaf; does not react to her name being called; in her "own" world; she stares off into space and "has a conversation" with things that are not there, and she often will laugh at "nothing" and go into hysterics
• Self-stimulations ("stims") -- i.e. hand flapping, finger flicking, toe walking constantly, and other "odd" body movements, as well as verbal stims (suddenly saying, "Car, roll, roll, roll, hot, mama, dada, up, up, up, ding, ding, wow" and pointing all over the place)
• Perseverations (repetitive actions) -- i.e. she has an "obsession" with pointing to the stove and saying, "Hot, hot, hot, hot, hot" over and over. She also likes to go back and forth from one object to another if there is more than one of something
• Extremely visual/detail-oriented -- she will notice the smallest spec of dirt or a spot and become obsessed with it. She also is obsessed with the letter M and will find it in a pattern on the rug, the wood grain of a door, etc. She loves wheels, trains, cars, and clocks also.
• She likes to line up her toys or put them in piles and gets upset if they are not all in place.

Like I said, there are many other things as well, but this gives a rough idea. Before we knew the signs of autism, we assumed that many of her behaviors were just her being a cute 2-year-old -- the hand flapping, toe walking, saying the same word over and over and over and over. But once we started really paying attention, it became very clear.

I then pointed out these things to her Early Intervention team and her pediatrician and they agreed that she needs to be evaluated.

Now That I Know, I Finally See...

I never really knew what the autism "spectrum" meant. When I thought of autism, like most people, I had a certain image in my head of a child rocking back and forth, banging his head, completely nonverbal, having no social skills whatsoever. Many people also think of Rainman; however, he is definitely NOT a typical example of what autism is.

Ever since she was a baby, I always felt like something was "different," especially after we thought she was deaf at 4 months old. She also was delayed in reaching some milestones. She didn't walk independently until 16 months, although she had taken a few steps before her first birthday. She also started talking late, although she "jargonized" and "sang" constantly (she still does!). She was saying Mama and Dada, but not always in the right context...just babbling mostly. She had said "kit" for kitty and had said "car" when we would get in the car, but then she stopped saying both of those words. Her pediatrician told us at her 18-month appt to just "wait it out" until she was 2 years old. She didn't start really saying words until she was 22 months or so, with the help of Early Intervention. She also didn't point at objects until she was close to 2 years old. Still, we never suspected anything other than a speech delay.

Fast forward to October of 2008. Katelyn had her 6-month evaluation for Early Intervention. They noticed that she sometimes took a little longer to process what was asked of her, but once she got it, she sure got it. They suggested it could be an auditory processing delay and that we may want to get her evaluated further. I casually mentioned autism (not even sure why) and they said they didn't think so, but it could be a possibility, so it would be best to get her evaluated.

That night, I went online and started googling "auditory processing delay" and ended up stumbling onto some autism information. I also found an online test on http://www.childbrain.org/, which suggested that she may have mild PDD (pervasive developmental disorder, which essentially means that she would be on the autism "spectrum"). I then began researching more and more and discovered that she had many symptoms of autism. I was shocked. It became so obvious to me and my husband that she had certain behaviors/characteristics of autism.

How was it that we never noticed this before?????? We just didn't know what to look for.

Now that we know, we finally see.