Let There Be Lights...

Last night, we took Katelyn and Ashley to see the amazing display of Christmas lights at a nearby shrine. It is a family tradition of ours. As soon as she saw the lights, Katelyn repeatedly exclaimed, "Wow, ites! Wow, ites!" And as we left, she kept saying, "Bye bye, ites!" She absolutely loves Christmas lights. I knew that she would really enjoy it this year.

Here are the girls all bundled up...

These pictures do not do it justice, but you get the idea...




Tonight, Kevin was testing out a string of Christmas lights and Katelyn spotted them. She and Ashley had a blast playing with the lights...

Mama's Little Helper...

Today I finally got around to actually moving the furniture in the livingroom and sweeping/vacuuming the floors. I knew that there would be an entire living ecosystem under there :) Besides the God-only-knows-how-old-these-darn-things-are goldfish crackers and Captain Crunch pieces (thanks, Katelyn!), we also found various cat toys and the missing pieces of various puzzles and toys that belong to Katelyn. We even found a "poob" :)

Katelyn was excited about the vacuum and the broom. She wanted a broom of her own, so I let her use the dustpan brush. She followed behind me as I swept and she was very proud of herself. Once Mama moved on to the vacuum, she took the large broom for herself and decided to help out by sweeping the kitchen :)

On Thanksgiving Day, Katelyn was thankful for...

Spending Thanksgiving at Uncle Pete and Auntie Amy's House!

"poobs" (tubes)

Sticks

Mama's Necklace (note the red scratches on my neck from her trying to rip it off of me)

Dada warming up her cold hands

Paper Tablecloths (so she can tear pieces off!)

Tickles!!!!!

Her Baby Sister, Ashley

And Katelyn is also thankful for all of the wonderful people in her life who love her very, very much, and are doing everything they can to help her become the amazing little girl that she is.

Thank you.

Oh, No. It's Santa.

Because I obviously have a need to be in a constant state of stress, I decided to take the kiddos to get their picture taken with Santa. For the last 2 years, Katelyn never had a problem with Santa. In fact, she was always intrigued by his soft beard, fuzzy outfit, etc. Well, given her reaction to getting her photos done recently, I expected that this year would be different.

Katelyn was very excited about all of the lights and the Christmas tree. She even enjoyed meeting Santa and checking out all of the presents near his oversized green chair. But when it came time to actually take the picture (i.e. Mama leaving the scene), that was when all Hell broke loose. Katelyn begged for me to stay with her while I tried to convince her to sit nicely for the picture (yes, I'm trying to reason with a 2-year-old). Not only did Katelyn get upset, but Ashley started crying as well. Great, now even the baby who never cries is crying!

With Ashley screaming and Katelyn running away from Santa, the photographer interjected some reality: "I don't think this picture is going to happen, Mom." However, I was not leaving without getting a picture of my girls with Santa. It is a tradition, afterall! Since it was clear that both girls were not going to sit pretty for Santa like I had hoped, I decided to go with plan B...Mama will have to be in the picture as well, sans make-up, sans shower, clashing outfit and all. I really wish the mall Santa photographers had access to Photoshop. Not to mention, Santa looks thrilled :)

Although it is definitely not what I had hoped for, at least I got my picture of the girls with Santa (and, unfortunately, me). I'm sure I will look back on this and laugh, and most of all, be grateful for the silly memory.

Who Needs Toys?

With a house FULL of every toy imaginable, Katelyn's favorite thing at the moment (aside from Giraffe, of course) is cardboard tubes. Whether they be from toilet paper, paper towels, or Christmas wrap, they get the job done. And the more, the merrier. She carries them all over the house, rolls them back and forth, snuggles with them (and Giraffe), stacks them -- you name it, she does it. She affectionately refers to them as "poob" :) When they start to unravel, she shows her concern by pointing out their "boo boo" and asking me or Dada to fix it. Yesterday, her Auntie Amy gave her an indestructible "poob" that will be able to withstand Katelyn's constant play. However, it was quite long and we were concerned that she would break everything in the house or poke out her little sister's eyes, so Dada cut it into 3 equal pieces (about the size of paper towel tubes). Now she is ecstatic that she has 3 indestructible "poobs" to roughhouse with, and we are grateful that Ashley won't have to sacrifice an eye in the process.

For the Love of Music...

Katelyn LOVES to sing. She sings all day long. She also claps in perfect rhythm to her favorite nursery rhymes (i.e. This Old Man, London Bridge, ABCs) and dances (i.e. bounces up and down, lol). She is in her crib right now for naptime, but instead of sleeping, she is singing and clapping to This Old Man as loud as she can and then laughing hysterically afterwards. As I sit here doing my work (I work from home), I am distracted by her and cannot help but smile and laugh along with her, almost to the point of tears. Her laughter is infectious and fills me with such warmth and peace.

We are doing all we can to encourage her love of music. My grandmother recently bought her a child's keyboard and microphone and we use this on a daily basis with her. She absolutely loves it. When she is older, if she is interested, we will get her involved in some sort of music lessons to further cultivate this strength of hers.

Zoning Out for the Holidays (photos, that is)...

Yesterday my grandmother and I took Katelyn and her baby sister, Ashley, for their holiday photo session. It was also Ashley's 6-month picture (she will be 6 months old at the end of the month). It certainly was an interesting experience.

I had been a little worried about how Katelyn would react because she was NOT happy at her 2-year photo session, although she had never had an issue before. I fully expected the blood-curdling screaming and crying and I was anticipating walking away without photos of my beautiful little girl. However, what happened next was unexpected and quite interesting to witness.

When we first approached the photo area, she began screaming and crying and clinging to me like a koala bear. She did NOT want to sit for the picture, even though her baby sister was perched happily (as usual) on the stage and smiling at her. Katelyn was repeating, "Mama, bye bye, Nana," desperately resisting to pose for the pictures. I then took out her beloved Giraffe and asked them to take his picture so that Katelyn could see him on the screen. She still cried, but she was interested in looking at Giraffe on TV.

Then all of a sudden, it was like someone flipped a switch. She stopped crying and just zoned out. It was like she went into her own little world. She was no longer scared, it seemed. However, she was so zoned out that it seemed that she was no longer aware of her surroundings, which made it virtually impossible to get her to look at the camera or smile. She did not respond when the photographer was clapping, banging, singing, shouting, squeaking toys, etc., except that she would occasionally repeat what they would say or she would start saying random words, "Wow, Mama, up, clock, ding, ding, ding." She also would immediately yell, "Mama!" if I tried to get up since I was sitting right next to her. That was the only thing that she seemed to notice.

Now, I have witnessed Katelyn zoning out and staring off into space before, but this was the first time that I saw her go from one state to the other. It was just as if someone had flicked a switch and off she went.

Needless to say, there are no pictures of Katelyn smiling, but that is perfectly fine with me because the pictures that we got capture the essence of Katelyn beautifully. I always tell the photographer not to focus on getting her to smile because she hardly ever does for pictures, and that is fine with me because she smiles and laughs off camera all of the time, and that is all that matters to me.

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.