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.

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.

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...

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.

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.

Happy World Autism Awareness Day!

What is World Autism Awareness Day?

"World Autism Awareness Day shines a bright light on autism as a growing global health crisis. WAAD activities help to increase and develop world knowledge of the autism epidemic and impart information regarding the importance of early diagnosis and early intervention. Additionally, WAAD celebrates the unique talents and skills of persons with autism and is a day when individuals with autism are warmly welcomed and embraced in community events around the globe. By bringing together autism organizations all around the world, we will give a voice to the millions of individuals worldwide who are undiagnosed, misunderstood and looking for help. Please join us in our effort to inspire compassion, inclusion and hope."

http://www.worldautismawarenessday.org/atf/cf/%7B2DB64348-B833-4322-837C-8DD9E6DF15EE%7D/WAAD%20Brochure%20English%20Formatted%20for%20Web.pdf

Facts from the Autism Speaks Website:

Did you know…

1 in 150 children is diagnosed with autism
1 in 94 boys is on the autism spectrum
67 children are diagnosed per day
A new case is diagnosed almost every 20 minutes
More children will be diagnosed with autism this year than with AIDS, diabetes & cancer combined
Autism is the fastest-growing serious developmental disability in the U.S.
Autism costs the nation over $35 billion per year, a figure expected to significantly increase in the next decade
Autism receives less than 5% of the research funding of many less prevalent childhood diseases
Boys are four times more likely than girls to have autism
There is no medical detection or cure for autism

The Red Flags of Autism...

(The following red flags may indicate a child is at risk for atypical development, and is in need of an immediate evaluation.) In clinical terms, there are a few “absolute indicators,” often referred to as “red flags,” that indicate that a child should be evaluated. For a parent, these are the “red flags” that your child should be screened to ensure that he/she is on the right developmental path. If your baby shows any of these signs, please ask your pediatrician or family practitioner for an immediate evaluation:

No big smiles or other warm, joyful expressions by six months or thereafter
No back-and-forth sharing of sounds, smiles, or other facial expressions by nine months or thereafter
No babbling by 12 months
No back-and-forth gestures, such as pointing, showing, reaching, or waving by 12 months
No words by 16 months
No two-word meaningful phrases (without imitating or repeating) by 24 months
Any loss of speech or babbling or social skills at any age

http://www.autismspeaks.org/whatisit/index.php

Click here to view the World Autism Awareness Day Brochure.

What are you going to do to spread awareness about autism?

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.

Katelyn's Video...

As I mentioned before, when my hard drive crashed, I lost the video that I was compiling for her evaluation. However, I did have the previously posted videos, plus some new footage that I captured over the weekend. Although I feel that some of the lost footage was more telling, I do believe that this video demonstrates a lot of her autistic tendencies. It was over 2 hours of footage total, but I managed to condense it to 28 minutes (and I stayed up until almost 4am on Saturday night to finish it).

Since I was so pressed for time and completely emotionally and physically exhausted, I'm not completely satisfied with the outcome (for those of you who know me personally, you know I am quite a perfectionist, lol). I would have liked to have edited a lot more, but overall, I think it captured some good footage of Katelyn.

Completely Fried...

My computer, that is.

My hard drive completely fried today out of nowhere. I was in the middle of typing an email and everything froze, and the only way to reboot was to push the button on the tower. When it tried to restart, it said, "Missing Operating System" -- well, after hours and hours and hours on end of trying everything possible to fix it, we realized that we can't even reinstall the operating system...we have to buy a new hard drive.

Now, luckily I have an online backup program called Carbonite (highly recommend this...it has saved me twice now from losing everything) so almost everything is recoverable. However, I had uploaded a ton of video clips of Katelyn and was working on making the movie to bring to her evaluation on Monday. I was almost done and that is when the computer crashed. I hadn't even had a chance to back up the movies, and unfortunately, they are all deleted off the camera. I am SO upset that the videos are gone forever. I finally had captured some awesome evidence for her evaluation that she NEVER does outside the home and rarely does it when we are around (because we usually redirect her).

I guess it isn't the end of the world, but making that video was one of the things that I've been focusing on all week to relieve my anxiety that they won't diagnose her. I felt so confident being armed with the videos and now they are gone. Not to mention, I have to spend every waking moment now trying to reinstall everything on my desktop once Kevin buys the new hard drive tomorrow (gee, the malls shouldn't be too crowded the last weekend before Christmas, lol).

Merry Christmas to me! :)

Katelyn, the Movie Star...

Katelyn's evaluation is coming up soon and I decided to take some videos of her to bring with us in case she doesn't show her "true colors" at the evaluation. She definitely shows more of her stims, etc., at home, which is why some friends and family members who do not see her in her home environment do not understand that she is most likely on the autism spectrum. This is also why it was difficult for us, her parents, to even suspect anything until we really started looking.

I feel that these two videos capture some of her symptoms (certainly not all, by any means) and I am hoping that it will be enough to demonstrate that she is on the spectrum. Some of the things that you will notice on the videos are perseverations, stims, and strange head, eye and body movements. The first video is 8 minutes and the second is 10 minutes.

It's a Date!!!

Yay! We finally have a date for Katelyn's autism evaluation. She will be evaluated on Monday, December 22nd, at 9am and it will take approximately 3-4 hours. We also have her feedback appointment scheduled for Monday, January 12th, at noon, which also happens to be Kevin's birthday - Happy Birthday, here is your daughter's diagnosis.

I feel some relief that we will have an answer soon and that Katelyn can start to receive help as soon as possible.

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.

Looking Back...

When Katelyn was a baby, she was extremely colicky and suffered from severe acid reflux. Because of the pain, she screamed and cried all the time. It broke my heart that she was in so much pain. She was put on soy formula at 6 weeks old, which seemed to help, but not 100%. She was put on a high dose of Axid and we had to keep upping the dose to finally get it right. They thought that she had pyloric stenosis. She could not be horizontal at all and she would instantly scream uncontrollably if she was put on her back flat. We had to put inclines in her crib and on her changing table. Finally at 6 months old, she was able to stop her medication and appeared to be reflux-free.

After Katelyn received her 2-month shots, she began projectile vomiting a lot. The next day after the shots, I was upstairs for a few minutes while she was sleeping in her swing downstairs. All of a sudden, I had a gut feeling that something was wrong. I ran downstairs and saw her slumped in her swing with her head to the side. I tried to wake her and she would not respond. I was terrified. Finally, she woke up and started screaming uncontrollably. She ended up being admitted to the hospital for ALTE (apparent life threatening event) testing. They did EKG, EEG, and other tests. Everything was normal. The doctors were baffled as to what caused the unresponsiveness. They said that the projectile vomiting for 3 days straight after the shots could have been a "normal" reaction to the immunizations. They denied, however, that her unresponsiveness could have been a reaction. I was not convinced.

A week later, she was readmitted to the hospital because she stopped breathing after a coughing fit, which caused her to choke. She was gasping for air and looked so scared, but she couldn't cry since she couldn't breathe. This was the second time in a week that we had a "life-threatening" issue. They did all sorts of tests and everything appeared normal. They said that she probably had "floppy airway," which means that her trachea walls were floppy or weak and were blocking her airway. I wasn't sure what to think.

At her 4-month appointment, they were asking us about milestones and they asked if she responded to her name. The nurse called her name...nothing. The doctor then slammed the door loudly and Katelyn didn't even flinch. When we got home, we banged pots and pans so loud that it hurt MY ears, but she didn't react at all, not even a blink. We ended up getting her hearing tested and everything was normal, although the people doing the testing really expected there to be a problem since she was not responding to the loud bicycle horn in her ear, etc. We were just relieved to know that she was not deaf.

Shortly after, I had mentioned this to my chiropractor just out of the blue. He told me that it sounded like a reaction to her shots (the unresponsiveness at 2 months and now the appearance of being deaf). I researched further and found some websites where other parents had shared their "reaction" stories. Some of them sounded exactly like what we went through with Katelyn. From then on, we decided not to vaccinate her until she was at least 2 years old because we believed that it was a reaction to the shots.

At the Starting Line...

Hi. I am starting this blog to share our journey. We are at the starting line, about to enter the very confusing world of autism. Our 2-year-old daughter, Katelyn, possibly has autism and we are in the process of having her evaluated.