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!

Caught in the Net (Swing, that is)...

When we first showed Katelyn the net swing, she was afraid of it and wanted nothing to do with it. Then a few days later, she asked for it out of the blue. We quickly hooked it up, not wanting to miss the golden opportunity to have her try it out. Just like I had expected, once she tried it, she loved it!!! Now she requests the net swing even more than her "baby swing" (that is what she calls the toddler swing).

The net swing is perfect for her because she can either sit up or lie down in it like a hammock. She also loves to snuggle with Giraffe while relaxing in the net swing. It seems to calm her down, which is a huge plus because she has been extra "stimmy" lately. Now when she feels the need to swing, she will go and grab either the net swing or the "baby swing" and drag it over. It is so nice to be able to provide her with one of her favorite activities while also serving her sensory needs.

Here are some pictures of Katelyn and Giraffe enjoying the net swing:

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.

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.

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.