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.

I Finally Have My Girl Back...

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

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

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

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

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

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

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

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

The Verdict Is In...

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

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

What happens now?

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

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

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

Let the Testing Begin...

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

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

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

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.