Oh, My, How Things Have Changed...

It has been almost 2 months since my last post, but not due to lack of things to talk about. On the contrary, there is far too much to even begin to describe what has been happening in our lives lately. Unfortunately, I do not have a lot of time right now to give a lot of details, but I will do my best to expand on this at a later date. I just wanted to share a brief synopsis since many of you have been inquiring on what has been going on with Katelyn...

Katelyn's presentation of symptoms has really changed drastically over the last few months. Every professional who has come in contact with her recently has agreed that she no longer seems to be presenting like autism, but instead like a psychiatric disorder. Our family now believes that she is experiencing some sort of hallucinations, including command hallucinations that prevent her from eating, make her hurt herself and others, and more. While she is far too young to be given a diagnosis, pretty much all of her symptoms meet criteria for early child-onset schizophrenia. It is extremely rare for a child of her age to present with schizophrenia, but after what we have witnessed over the last few months, we are convinced that she has some sort of psychosis. And like I always say, just because something is extremely rare does not mean it doesn't exist. I don't care if the odds are 1 in a billion...if you are that 1 person, statistics have no meaning.

We are in the midst of trying to advocate for our daughter as we always have, but now we are facing many brick walls since we are entering the realm of mental illness. While autism is gaining more and more awareness and supports, unfortunately there are not many resources for childhood mental illness. Despite being kicked when we are down in what appears to be an uphill battle, we will not let this stop us from continuing to fight to get help for our beautiful little girl. Through no fault of her own, or anyone else's for that matter, Katelyn was dealt a difficult hand in life, but we will not sit back and watch her suffer. It may take years, and many bumps and bruises along the way, but we have faith that we will eventually find answers and appropriate treatment for what is causing our daughter so much pain.

Thank you all for your support throughout this extremely difficult time. Whenever I find the time (so probably never, haha), I will be revamping this blog since we most likely are facing something other than autism. However, I will continue to support autism research and awareness.

Rain, Mud, Wind...Bring It On!

Today was the Autism Speaks Walk Now for Autism event in Boston, and despite the dreadful weather, Team Giraffe's Song accomplished our mission! Granted, our "team" only consisted of 3 people (Me, Kevin, and my grandmother) instead of the 11+ people who were originally planning on walking with us. Thankfully, Kevin's parents babysat the girls for us since we did not want to bring them out in the rain.

The event was held at a horse racetrack, which is 1 1/4 miles long. The track itself is dirt, and when you mix in torrential rain and wind, you get a track full of mud puddles. Many people took a few steps on the track and decided to head back inside for shelter. Kevin was just one of many people who chose not to walk at all, given the conditions. He tried to convince me and Nana that it was a bad idea to attempt the walk, but we were willing to take our chances.

As Nana and I were about to take our first slippery step onto the track, a woman warned us not to bother; "It isn't worth it," she said. Nana and I both looked at each other and thought the same thing: Katelyn is worth it!

With our goal in mind and determination in our hearts, we made our way onto the mud-filled track, which proudly displayed thousands of muddy holes, each in the shape of a footprint. As we pushed forward, we fought against a sea of people who had turned back, not willing or able to withstand the elements. Of course, Nana and I weren't sure how far we would actually make it either, but we were determined to at least add a few of our own footprints to the track in honor of Katelyn.

Battling the fierce winds and heavy rain, we trekked through the filthy mud one step at a time. Cheering each other on, against all odds, we both managed to complete the entire 1 1/4-mile track. Our shoes and pants were stained with mud, but we didn't care. We were proud of ourselves and each other for accomplishing even more than we had set out to do, given the circumstances, not to mention the fact that I am almost 7-months pregnant and Nana is 75 years old! Once we were finished, Kevin rewarded us with coffee and hot chocolate.

Inside, there was a great resource fair consisting of informational booths, activities for children, and merchants selling autism-related items, such as jewelry, scarfs, magnets, and more. Nana and I both got beautiful puzzle-piece pendants with silver chains to commemorate our achievement.

Although the weather conditions were not ideal, we made the best of it and had a great time at our first autism walk. Hopefully next year we will have a beautiful sunny day, but no matter what Mother Nature throws our way, we will be there, ready to face the rain, mud, snow...you name it. Bring it on!

Here are some pictures from the event...




Thank you to everyone who supported Team Giraffe's Song! We raised a total of $810 to date! (Please note, donations can still be made until the end of the year!)

Walk Now for Autism - only ONE week left!

Please join Katelyn and her family and friends in our fight to make a difference in the lives of the more than 1 million Americans living with autism today.

Katelyn was diagnosed with autism in January of 2009 at the age of 30 months. With the help of her dedicated family, friends, and therapists, she is making tremendous strides.

It is our hope that, through vital research conducted by organizations such as Autism Speaks, we can learn more about the causes, treatments, and prevention of autism, while also raising public awareness.

To do our part, we are participating in Walk Now for Autism. We are not only walking in honor of our beloved daughter, we are walking for all who are or will be affected by autism, whether they be family members, friends, or people living "on the spectrum."

To make a donation (tax deductible) to Team Giraffe’s Song, you may either:

1) Visit our Team webpage by clicking here.
2) Use PayPal. Our Team PayPal account is giraffessong@gmail.com.

Thank you for taking an important step in the fight against autism!

Donations are tax deductible to the fullest extent allowed by law.
Autism Speaks 501 (C)(3) Tax Id #: 20-2329938

Matching gift program: Many companies provide their employees with matching gifts. Please consult your employer on its matching gift guidelines and attach matching gift forms accordingly.

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!

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?