Showing posts with label autism. Show all posts
Showing posts with label autism. Show all posts

Thursday, April 12, 2012

"It's Just a Phase"...

I recently gave birth to my fourth child, Matthew, and I thank God every day for the wonderful blessings I have been given.  I consider myself lucky to have both NT (neurotypical) children, as well as a child with special needs.  I believe that this gives me a unique perspective on what it is like to raise children.  I do not, however, claim to be an expert on child-rearing; I am just grateful that I am able to experience both of these scenarios.

I have always believed, and heard from other parents, that having a special needs child teaches us many life lessons.  I know that I have certainly learned a lot from Katelyn, given her dual diagnoses of PDD-NOS (autism) and psychiatric illness (psychosis).

This morning after getting Katelyn and Ashley ready for school, I had a realization that I've known for a long time, but never knew how to make sense of it or put it into words.  It seems pretty obvious now, but it came over me like an epiphany this morning.

When a parent of a "typical" child worries about their child being addicted to their binky or not being potty-trained at age 3, etc., we often comfort them with phrases such as, "Don't worry, she will NOT be walking down the aisle with a binky in her mouth," or "No one wears diapers at their high school graduation!"  These phrases imply that there is no doubt, it is a fact, that these typical children will eventually outgrow these issues, that these are in fact normal stages in life that are certain to improve over time, and in the short term no less.  The reality that "this will not last forever" helps the parents to get through the rough time, knowing they can look forward to a brighter future where binkies and diapers are a thing of the distant past.

Here's the kicker.  When parenting a special needs child, the concept of "normal" development flies right out the window.  There is no such thing as "it is just a phase" when it comes to a special needs child.  No one can offer you the same comfort that your child will not be wearing diapers at their high school graduation, or that they will even graduate at all.  For some of our children, it is an unfortunate reality that they will never outgrow these "phases."

Given that I have 4 very young children, I find myself using these comforting phrases quite often with regards to my typical children.  Ashley, 3 years old, is at the dramatic "I'm the boss" stage, and Trevor, 2 years old, is at the screaming, tantruming stage.  What gets me through the day when Ashley and Trevor are having "difficult" days is reminding myself that "this is only a phase," and that they will soon outgrow this behavior as they continue to develop.  However, I realized that I never say that about Katelyn when she is having a difficult day, which is an everyday occurrence, some days worse than others.  

Special needs kids present a laundry list of challenges, whether it be behavior, self-care, cognitive functioning, etc., and one of the hardest things to deal with as a parent of these special children is not being able to reassure yourself, or your concerned family members and friends, that "this is just a phase."  There is no such thing as a "phase" for these children. In some cases, it is obvious that the child will never be able to function independently, toilet-train, live on their own, etc.  In other cases, like ours with Katelyn having psychiatric issues involving psychosis, there is a huge question mark, a big unknown about what her future will hold for her.  Will she live independently?  Will she marry and have children?  Will she be able to attend regular public school one day and graduate?  Who knows.  In either case, I believe it is the lack of being able to reassure oneself that these day-to-day challenges are simply a phase, a stage, something that will eventually dissipate and life will be easier some day.  

Again, being a mom of both special needs and typical children, I can appreciate both sides of the coin.  I know what it is like to be able to tell myself this is only temporary, life will get easier, the kids will outgrow this, and I also know what it is like to have to face the reality that some things will never change and could even get harder in the future.  

I felt the need to share my realization, not to depress the parents of special needs children or to make parents of typical children feel pity, but to put into words what sometimes is hard to understand, even when you are living it day after day.  I hope this post is helpful to others.  It has been helpful for me to write it.

Saturday, December 10, 2011

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.


Saturday, December 3, 2011

Another Video of Katelyn...

Here is another video of Katelyn I put together to hopefully help her doctors to determine what is going on with her. It is less than 10 minutes long, but shows a pretty good amount of her odd behaviors and language. There is no question this is not a characteristic of her autism, but it is becoming more apparent as she gets older that it could be psychosis/hallucinations.



Monday, November 21, 2011

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...

Tuesday, May 10, 2011

Video of the Press Conference From Today, Plus Q&A About Investigation Results...

Video of the Press Conference discussing possible link between autism and vaccines. Worth watching, regardless of your opinion on the subject. We all need to be educated consumers and be willing to listen to all sides of the story when it comes to the safety of our children...



Q&A about the results of the investigation, as well as link to original research paper...

High Rates of Autism Found in Federal Vaccine Injury Program: Study Says More Answers Needed

Link Between Vaccines and Autism? Press Conference Today, 5/10/11, at noon EST...

Regardless of your beliefs about a possible link between autism and vaccines, please tune in to the live webcast today from the steps of the US Supreme Court, streaming live at the following website:

http://www.ustream.tv/channel/ebcala

Here is some more information regarding what will be discussed, thanks to Ginger Taylor and her blog:
-------------------------------------------------------------------------------------
In 2008 Johns Hopkins Neurologist Jon Poling went public with the news that his daughter Hannah, who regressed into autism following her 18 month vaccines, was paid by the Vaccine Injury Compensation Program.

CDC, in a public statement, claimed that the Hannah Poling case was "rare" and should not be generalized to "normal" children. Days after the Poling's announcement, the Hiatt family also went public with their VICP ruling that their autistic daughter Madison was also a vaccine injury victim. Then the Banks family went public. Finally, CBS News reported finding 7 more vaccine/autism cases that dated back to 1991, the very beginning of the autism epidemic.

So the autism community wanted to know... just how many cases of autism have been paid by the program that was established in 1986, how "rare" is this, and what did the government know about vaccine injury and autism causation that they were not telling the public and the medical community. After being questioned by a journalist, the department of HHS that oversees the VICP issued the following statement on whether this was an admission that the government was now paying children for vaccine induced autism. The "official response" from HRSA:

"From: Bowman, David (HRSA) [mailto:DBowman@hrsa.gov]
Sent: Friday, February 20, 2009 5:22 PM
To: 'dkirby@nyc.rr.com'
Subject: HRSA Statement

David,

In response to your most recent inquiry, HRSA has the following
statement:

The government has never compensated, nor has it ever been ordered to
compensate, any case based on a determination that autism was actually
caused by vaccines. We have compensated cases in which children
exhibited an encephalopathy, or general brain disease. Encephalopathy
may be accompanied by a medical progression of an array of symptoms
including autistic behavior, autism, or seizures.

Some children who have been compensated for vaccine injuries may have
shown signs of autism before the decision to compensate, or may
ultimately end up with autism or autistic symptoms, but we do not track
cases on this basis.

Regards,

David Bowman
Office of Communications
Health Resources and Services Administration
301-443-3376"

This admission of a link to autism, and the disturbing revelation that the government was not even planning on counting how many autism cases it had paid from the vaccine injury fund, made it clear that HHS's claims of concern for the rise in autism rates and concern for vaccine safety were less than sincere, and that it was time for an investigation into the VICP to find out how many of the cases of vaccine induced encephalopathy (brain damage) resulted in "autistic behavior, autistic symptoms or autism" as Bowman had referenced.

[Today] the results of this two year investigation will be revealed and we will get a better look into what the government knows about vaccine/autism causation and how long they have known it.

-----------------------------------------------------------------------------------

My own personal opinion about the possible link between autism and vaccines:
I have a daughter with autism and I do NOT believe vaccines caused her autism. However, I believe, like many others out there, that there could be a link between some children who are susceptible to autism genetically and just need an environmental trigger, such as an ingredient in vaccines, that causes the autism to come out. Just like some of us are more susceptible to diabetes or cancer. Not everyone who gets vaccinated is going to get autism, and not everyone who doesn't get vaccinated is not going to be autistic. It is just if you are one of the "unlucky" susceptible people, an environmental trigger could push you over the edge. People who don't have kids with autism or who aren't directly affected by it need to stop judging others who live with this in our lives on a daily basis. And open up your ears. Not everyone is anti-vaccine, but pro-safer vaccines, and pro-research. And there has NEVER been a study that PROVED there was no link, there just haven't been publicly released studies that proved there were (although I am a believer that there is a lot of data out there showing the government, Big Pharma and CDC know far more than they let on).

‎"A country that requires all children to receive a product - no matter how beneficial - knowing that some children will die and others' lives will be destroyed by the use of that product, risks losing all moral authority." -- James Turner, JD

Wednesday, April 13, 2011

We're Now On Facebook!

Hi everyone!

Now you can follow my blog on Facebook! You can click on the LIKE button on the right upper corner of this page, or you can visit the page directly by clicking HERE!

Thanks for your continued support! :)

Monday, April 11, 2011

A New Dawn, A New Day...

As usual, a lot has changed since my last post... As time went on, we began to realize that Katelyn needed an educational placement that specialized in children with autism spectrum disorders and other related issues. After having her neuropsychologist visit her preschool classroom, it was determined that an out-of-district placement was necessary in order to provide Katelyn with the most appropriate educational setting. We hired an educational advocate, and subsequently a special education attorney, and we were able to achieve the ultimate goal for our daughter. After an emotionally and financially draining process, the school district agreed to out-of-district placement at a very reputable private day school that specializes in autism that provides ABA instruction all day, which also happens to be the same place where she was originally diagnosed at age 2.5. She also has been receiving home ABA services again through one of the agencies that worked with her a few years ago, and this has been extremely productive for her. We always knew that she responded well to ABA teaching, and we're so glad that she will be receiving ABA instruction on a consistent basis again since it was so successful in the past.

Today was her first day at her new school and it truly could not have gone any better. She was excited this morning to be going to a new school. We had created a social story with pictures of her new school to help with the transition and she really enjoyed reading it. When we arrived at the school, she was very happy and talkative. We were brought to the integrated preschool classroom, which has peer models. When we arrived, the other children were not in the classroom, which made it very easy for Katelyn to get situated and check out her surroundings. After a few minutes, the children returned to the classroom, and I was not sure how Katelyn would react. But she surprised us and was happy to see "new friends" and even asked one little girl her name (indirectly, asking us "What is her name?")! The little girl responded with her name and then I prompted Katelyn to respond that her name was Katelyn, which she did. It was snack time, so Katelyn sat at the table with teachers around her and I made my exit. Katelyn asked me to stay, but did not get upset at all when I told her I had to leave and would be back later after she played with her new friends.

When I arrived to pick her up, I saw Katelyn playing with toys near the other children. The staff informed me that she had a wonderful day and that she was able to spend the entire day in the integrated preschool classroom! The original plan was to have her in another classroom without peer models and slowly introduce her to the integrated setting, if possible, but once again, she surprised us! She went to the cafeteria for lunch, sat independently with her friends at circle time, and even participated by raising her hand during art class! At times, she was taken aside to work on some discrete trial training and assessments, and while she was a little distracted, she did not have to be removed from the room or behind a partition as was expected. Overall, she had an amazing day!

When she saw me, she was very excited and she said she had fun at her new school. She even went over to her new friends and said bye to them. Then she shouted, "Thanks, new school! Thanks, new friends!" and became very happy and clapped when I told her she would be coming back tomorrow.

We are so relieved that she enjoyed her first day at her new school and we feel 100% confident that this was the right decision for her. We can't wait to watch her continue to flourish and exceed our expectations. We are eternally grateful to all of you who provided support and prayers that Katelyn would get what she desperately needs. There is nothing we wouldn't do to help our daughter and we will continue to be vigilant to ensure that she continues to receive the appropriate services that she deserves.


Getting ready for her first day at her new school!



Taking it all in...


Friday, June 4, 2010

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.

Tuesday, February 23, 2010

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.

Sunday, February 14, 2010

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.

Sunday, December 13, 2009

Autism Night Before Christmas (poem)...

A friend forwarded this poem to me and I wanted to share it with you. It is written from the perspective of a mother of a child with autism. Although not all of it applies to my specific situation, I can relate to much of what is expressed here.

If you are a parent of a child with autism (or other special needs), I hope that you find it as moving and inspirational as I did. If you are a parent of a "neurotypical" child, I hope that you learn something from these words, as I also have learned from my own experience with my beautiful daughter, Katelyn.

Autism Night Before Christmas
by Cindy Waeltermann

Twas the Night Before Christmas
And all through the house
The creatures were stirring
Yes, even the mouse

We tried melatonin
And gave a hot bath
But the holiday jitters
They always distract

The children were finally
All nestled in bed
When nightmares of terror
Ran through my OWN head

Did I get the right gift
The right color
And style
Would there be a tantrum
Or even, maybe, a smile?

Our relatives come
But they don't understand
The pleasure he gets
Just from flapping his hands.

"He needs discipline," they say
"Just a well-needed smack,
You must learn to parent…"
And on goes the attack

We smile and nod
Because we know deep inside
The argument is moot
Let them all take a side

We know what it's like
To live with the spectrum
The struggles and triumphs
Achievements, regressions…

But what they don't know
And what they don't see
Is the joy that we feel
Over simplicity

He said "hello"
He ate something green!
He told his first lie!
He did not cause a scene!

He peed on the potty
Who cares if he's ten,
He stopped saying the same thing
Again and again!

Others don't realize
Just how we can cope
How we bravely hang on
At the end of our rope

But what they don't see
Is the joy we can't hide
When our children with autism
Make the tiniest stride

We may look at others
Without the problems we face
With jealousy, hatred
Or even distaste,

But what they don't know
Nor sometimes do we
Is that children with autism
Bring simplicity.

We don't get excited
Over expensive things
We jump for joy
With the progress work brings

Children with autism
Try hard every day
That they make us proud
More than words can say.

They work even harder
Than you or I
To achieve something small
To reach a star in the sky

So to those who don't get it
Or can't get a clue
Take a walk in my shoes
And I'll assure you

That even 10 minutes
Into the walk
You'll look at me
With respect, even shock.

You will realize
What it is I go through
And the next time you judge
I can assure you

That you won't say a thing
You'll be quiet and learn,
Like the years that I did
When the tables were turned……

Sunday, October 11, 2009

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.

Tuesday, August 25, 2009

Katelyn's 3-year professional photo session...

With much anxiety on my part, we took Katelyn for her 3-year professional pictures back in July. Since our experience at her 2-year and Christmas 2008 sessions did not go well, I was expecting a full-blown screaming meltdown to take place where we would be lucky to get any pictures taken, never mind any decent smiling pictures. However, our little girl surprised us in a very big way! It was the best photo session EVER for Katelyn! She laughed and smiled the whole time, unlike all other previous photo sessions where it was like pulling teeth. I even notified the photographer at the beginning that she has autism and that she may scream and melt down, and at the end of the session, the photographer said she never would have known that Katelyn has autism and that she was such a pleasure to work with. Talk about making my day!

Katelyn has come so far already in just a few months and we are beyond hopeful that her progress will continue.

A month and a half later, I am finally getting around to uploading these photos *blush* ;) These photos are untouched before we had any enhancements and borders added.

Tuesday, August 18, 2009

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!

Wednesday, April 29, 2009

"Autism Genes" Identified...

Yesterday, researchers declared that two studies have led them to the discovery of certain genes that appear to be associated with autism. It is believed that this genetic link may be responsible for roughly 15% of cases of autism spectrum disorders.

This is a remarkable breakthrough, as it will hopefully allow scientists to learn more about the biological causes of autism and also to develop effective treatment options.

I do believe that some cases of autism are genetic (how can it not be when you have some families with multiple kids on the spectrum), but I also believe that there are environmental factors that "trigger" autism in some children (gluten/casein intolerance/allergy and other food sensitivities, vaccine ingredients, leaky gut syndrome, etc.). This is evident in the fact that many children with autism benefit greatly from various biomedical interventions, such as the GFCF diet (gluten-free, casein-free) and chelation (detoxification of metals from the body). I do hope that they continue to research the environmental causes as well.

This quote from Dr. Hakonarson, the leader of the research study, sums up my feelings on this subject:

"There are going to be many genes involved in causing autism," says Dr. Hakonarson. "In most cases, it’s likely that each gene contributes a small amount of risk, and interacts with other genes and environmental factors to trigger the onset of disease."

Here is a video, followed by some related articles, regarding this recent discovery:


Risk of Autism Tied to Genes that Influence Brain Cell Connections

Autism Genes Discovered; Help Shape Connections Among Brain Cells

What the Autism Gene Finding Means for Parents

Wednesday, April 22, 2009

Sensory Overload...

When we first started to suspect that Katelyn had autism, we didn't really think that she had sensory issues. However, all of a sudden it has become very apparent that she definitely has a lot of sensory needs. She becomes overstimulated and will get herself all worked up and then crash hard. She will go from being hyper, laughing and talking a mile a minute, and then all of a sudden she will start crying out of nowhere.

It is very common for kids (and adults) with autism to have difficulty regulating their sensory needs and emotions. A lot of these sensory issues can come about due to environmental factors, such as loud noise or bright lights, but the cause is not always obvious. We are still trying to figure out the triggers for some of Katelyn's behaviors and sensory needs.

There are many ways in which to help a person with autism regulate themselves. For instance, sometimes deep pressure helps, which is the case for Katelyn. She likes hard squeezes and squishes, and to be thrown into the couch or covered in pillows and blankets. For this reason, we have implemented a weighted vest, which helps her to remain calm and focused. We have also ordered a weighted blanket, which is supposed to help with this as well. Katelyn also craves activities such as swinging, jumping on the mini trampoline, bouncing on a large exercise ball, and playing with Play-Doh and beans.

Last Thursday, I began implementing a brushing program to help with Katelyn's sensory regulation. It involves brushing her arms, back, and legs every 2 hours with a special brush, and then following this with joint compressions. So far, it seems to be working wonders! Last week, she was having frequent meltdowns and was unable to focus on her therapy, but this week, she has been doing great! She is sitting at the table and attending once again and is remaining much calmer throughout the day. I also believe that it could have to do with the fact that she is now getting used to her much more demanding schedule.

With autism comes many challenges, only one of which is sensory needs, but by educating ourselves and being willing to try new and different methods, we will find what works for Katelyn.

Wednesday, April 15, 2009

The Sky is the Limit...

Since the end of January, Katelyn had been getting 7.5 hours of ABA per week. We were on waiting lists for a few different ABA providers, hoping to get more hours added. However, it never seemed to pan out.

Then one day I met another local mother at Katelyn's EI playgroup. Her son also has autism, so we began talking about therapies. I mentioned that Katelyn was only getting 7.5 hours per week, despite the fact that it was recommended that she have 20-25 hours per week (and there have been studies that have shown that 20 hours minimum is the "magic number" for ABA to really be most effective). She gave me the information for the ABA provider that her son uses and she said to give them a call since they had offered her a ton of hours from the start. I immediately called them when I got home and asked if they had availability. They were very responsive and were out within a few days to do an intake on Katelyn. Shortly after, they came out and did an evaluation to see what areas they would need to work on with Katelyn.

Because we absolutely love Katelyn's original ABA therapist, I mentioned to her the fact that we were going to be adding another provider to work with Katelyn, but that we wanted to definitely keep her on as well. She spoke with her director and they actually ended up offering us a few more hours with another therapist also!

So, all in all, Katelyn is now receiving 26 hours per week of ABA, in addition to her 1 hour of speech therapy, 1 hour of occupational therapy, and 1 hour of developmental stimulation through EI. This is a HUGE increase in services and we couldn't be more pleased. And now she has a total of 7 therapists!

She has come so far in such a short time with just the 7.5 hours per week, so we can only imagine how high she will soar now that she is getting even more help. The sky is the limit.

Sunday, April 12, 2009

How I feel about the "cure" and Jenny McCarthy...

Last night, Kevin and I watched the interview with Jenny McCarthy and Jim Carrey on Larry King Live. Here is my personal opinion on the autism "cure" and Jenny McCarthy's efforts in the "war on autism."

I do not believe that we can "cure" our children (nor would I actually want to), but that we can "recover" our children and help them be able to function as close to NT as possible.

I personally am not looking for a "cure" for Katelyn. I believe that our ASD children can teach us so much about acceptance and love and seeing the world in a whole new way, and I am grateful that Katelyn has come into my life. I love all of her little quirks and obsessions and things that make her HER, but of course I also wish for ways to help her with sensory issues, social skills, and aggression. So I would definitely welcome something that would help her "recover" from the things that will be roadblocks in her life, but would I want her "cured" -- never. To me, autism is a large part of who she is and I love her just the way she is.

I also agree with Temple Grandin that if we "cure" autism, the world would actually suffer because there would no longer be social misfits with brilliant minds inventing all of the wonderful things like the internet, etc. Everyone would be too busy socializing

But I respect those parents who are desperately looking for a cure for their child. All of us have different experiences with our ASD kids and only we as their parents know what it is like to raise them.

As far as Jenny, I read her book, Louder Than Words, when I was waiting to get Katelyn diagnosed. I really enjoyed her book and it gave me hope in a time of worry and confusion. I do think that it is great that she and Jim Carrey are on a mission to educate people about autism, and that they are fighting the battle, but I do believe that she is a little overboard and one-sided. I do wish that she would be more careful and more open-minded about the fact that not every child can be "cured" or "recovered" in the ways that her son has been. She needs to be looking out for the needs of EVERY child with autism.

Here is PART 1 of the Larry King interview with Jenny and Jim:


If you would like to watch the rest of the interview, click the links below:
PART 2
PART 3
PART 4
PART 5

If you would prefer to read the transcript from the show,CLICK HERE.

Glossary: NT = neurotypical or "normal", ASD = autism spectrum disorder

Thursday, April 2, 2009

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."


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


Click here to view the World Autism Awareness Day Brochure.

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