"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.

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.

Too Young To Diagnose...

People often say we need to treat the cause of a disease rather than the symptoms, since treating the symptoms without knowing the cause is like putting a band-aid on the problem, not solving it. We need to get to the root of the problem, what is causing the symptoms? Well, this doesn't apply to childhood mental illness. Too young for an official diagnosis, all we can do is treat the symptoms that the child presents and hope that they are effective, and if not, make necessary adjustments along the way until the child is old enough to determine an "accurate" diagnosis.

A few weeks ago, I took Katelyn to see her developmental pediatrician for her routine followup appointment. We have a great system of communication and I regularly update her via email on how Katelyn is doing. I had described some recent concerning events, including what appeared to be mood swings (going from rage/aggression to hysterical laughter), hyperactivity and uncontrollable laughter episodes where she does not seem to be in touch with her surroundings, and some odd signs that we had not seen since starting her current medications roughly a year ago that made us suspect she could possibly be seeing or hearing things that are not really there.

Since she is now so much more verbal than in the past, she is able to articulate her thoughts a bit more clearly, which does sometimes help, but at her young age of just shy of 5 years old, it still leaves us questioning how much is "normal" and how much could be signs of mental illness? For instance, many children have imaginary friends or have great pretend skills. In fact, one of Katelyn and her sister's favorite things to do is pretend they see Swiper the fox from Dora the Explorer and yell, "Swiper, no swiping!" and run away, laughing. However, the difference in my opinion of what is "normal" imaginative play and abnormal behavior is when the child becomes visibly frightened and goes into a complete meltdown, over what could otherwise be perceived as pretend play. I am not a mental health professional, but it doesn't seem normal to me that a child would be terrified by "normal" pretend play or imagination.

Below is a video from April 2011 that shows just one example of what I'm referring to. I will fully admit that I did not know what the proper response would be in this situation, to tell her that what she thinks is a little girl is not real or to pretend that I did see the little girl too. I was not prepared for this and was caught off guard.

At the appointment with her developmental pediatrician, we discussed the symptoms and changes in detail. At that point, the doctor said that she feels that Katelyn may be displaying psychotic features as we have suspected for a while, and that we should slightly increase her atypical antipsychotic medication to see if it helps. She further stated that if this is the case, Katelyn may not be able to distinguish what is reality and what is not, and that we need to provide her with as many positive, happy moments in her life in order to help her discern in the future what is real and what isn't when she is an adult. She will possibly need medication for her whole life to help her with this as well.

The doctor said that she is not ready to diagnose schizophrenia or something similar at this time due to Katelyn's young age, but she does foresee her receiving a mental health diagnosis down the road once a more definitive diagnosis could be reliably achieved, if possible. At this point, PDD-NOS is the closest diagnosis that seems to fit Katelyn's profile, although she demonstrates many atypical signs as well.

The good news is that Katelyn continues to thrive and improve at her new private day school. She could not be happier at her new school and she is responding very well to the ABA approach, which further demonstrates my argument that it doesn't matter what she is diagnosed with -- call it "XYZ" or "ABC" -- if it is working, then it is an appropriate method of treatment!

So, until we get an official, reliable mental health diagnosis for Katelyn, we will continue to treat her symptoms instead of trying to determine the cause, despite how difficult it is to not know what exactly is going on with your child. For now, we'll hold out hope that one day in the not-too-distant future, we will have the answer we are looking for. And whatever that answer is, we will deal with it, and do everything we can to empower Katelyn to deal with it as well.

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...

So Far, So So...

Katelyn has been in the partial hospital program for almost 3 weeks now. She likes the staff and seems to look forward to going there, but she is still struggling in many ways.

After observing her and collecting data from her family, teacher, and diagnostic tests, it has been determined that she is suffering from a severe anxiety disorder and most likely depression as well. There is most likely something else going on here in addition, but right now the focus is to alleviate some of her anxiety since she is in an insurmountable amount of distress, which is making it impossible for any other behavioral interventions to have an effect at this time. Therefore, last Tuesday, after careful consideration by her psychiatric team and family, and weighing the pros and cons, we agreed to a trial of low-dose Prozac to hopefully help get her level of anxiety to a more manageable state. This was an extremely difficult decision for us, but at this point, all other avenues have been exhausted and it is clear that nothing is going to be able to help her until we get her anxiety under control. Now, we just have to wait and see if it has an effect, which could take weeks.

We have seen some improvement in certain areas, but she still has a very long way to go. She has shown some interest in activities lately, such as doing puzzles or building towers with giant Legos. However, she still requires a significant amount of adult direction and encouragement to become engaged in most activities. She also has been smiling and laughing more, and even showing some interest in being silly with Ashley, although she is still aggressive towards her at times. Unfortunately, she is still perseverating constantly, even worse than before, asking for things over and over and over and over again for hours on end, and then screaming or becoming aggressive when she does not get immediate gratification.

Because she is so unstable at this time, we have decided to postpone her reevaluation at the May Institute until she is better able to demonstrate her true potential and capabilities. At this point, we honestly are questioning whether she truly has autism or if this is something entirely different masking itself as autism because some of the behaviors that she is demonstrating (i.e. her awareness of how her actions affect others, doing things "out of spite," etc.) are not consistent with an autism diagnosis. Even the director of the program stated that he does not feel that she presents with classic autism symptoms at this time, which is what her diagnosis currently is. Although she does exhibit many "red flags" for autism, he feels that we will have to wait and see over time how it all plays out to determine if she truly has autism or just some characteristics. So we will definitely be having her reevaluated at the autism diagnostic center when appropriate.

At this time, it is unclear how many more weeks she will be in the program, but we are trying to be optimistic that she will continue to make improvements. We are hoping that we will see significant progress once the Prozac takes effect since she is still being tormented by the level of distress that her little body and mind are experiencing on a constant basis, which is also taking its toll on our entire family. I'll continue to provide updates when I can. Thank you all for your continued support, love, and prayers.

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.

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

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?

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.

The Verdict Is In...

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

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

What happens now?

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

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

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

Katelyn's Evaluation...

Finally, we have an answer -- well, at least a partial answer to the main question that I was so desperately needing to hear.

Katelyn has autism. My daughter has autism. Finally I know, and I can breathe.

After months of worrying that the doctor would not see the signs that I knew in my heart were there, the doctor reassured me that she is indeed on the spectrum. Upon hearing this news, I thanked the doctor over and over, and I told her that she didn't even know how much weight she had just taken off of my shoulders. I know it must sound strange to think that a mother would be relieved, even happy, to hear that her daughter has autism, but when you have known in your heart and your gut since your child was a newborn that something was different with her, all you want is validation for those feelings, along with knowing that your child will now receive special services to help her be as successful as she can be throughout her life.

I am not one to cry about anything, even devastating news, but I cried the entire ride home. I was so overwhelmed with the relief of hearing the answer disclosed, even though I had known 100% all along that it was true. Hearing those words, "Katelyn definitely is on the spectrum," took away all of the heartache and worry that I had been holding onto for months, fearing that they wouldn't see what I knew, fearing that she wouldn't get the help that she needs.

We will receive her official detailed diagnosis on January 12th, which will outline exactly where she falls on the autism spectrum, and what specific services she will need.

Now, the journey truly begins.

Completely Fried...

My computer, that is.

My hard drive completely fried today out of nowhere. I was in the middle of typing an email and everything froze, and the only way to reboot was to push the button on the tower. When it tried to restart, it said, "Missing Operating System" -- well, after hours and hours and hours on end of trying everything possible to fix it, we realized that we can't even reinstall the operating system...we have to buy a new hard drive.

Now, luckily I have an online backup program called Carbonite (highly recommend this...it has saved me twice now from losing everything) so almost everything is recoverable. However, I had uploaded a ton of video clips of Katelyn and was working on making the movie to bring to her evaluation on Monday. I was almost done and that is when the computer crashed. I hadn't even had a chance to back up the movies, and unfortunately, they are all deleted off the camera. I am SO upset that the videos are gone forever. I finally had captured some awesome evidence for her evaluation that she NEVER does outside the home and rarely does it when we are around (because we usually redirect her).

I guess it isn't the end of the world, but making that video was one of the things that I've been focusing on all week to relieve my anxiety that they won't diagnose her. I felt so confident being armed with the videos and now they are gone. Not to mention, I have to spend every waking moment now trying to reinstall everything on my desktop once Kevin buys the new hard drive tomorrow (gee, the malls shouldn't be too crowded the last weekend before Christmas, lol).

Merry Christmas to me! :)

Bad Day at the Office...

Yesterday was Ashey's 6-month doctor visit. I didn't expect there to be a problem since the appointment was for Ashley and not for Katelyn. Boy, was I wrong!

Katelyn started out okay for the first few minutes, but then she saw a man sitting in the waiting room and said, "Hi Dada." He laughed and I explained that she calls all men "Dada." Well, then she proceeds to run to him saying, "Dada!!!!!" I go get her before she leaps on him and at first she is laughing. Then she goes into a fit of RAGE! She started screaming at the top of her lungs -- I thought the windows were going to crack! She was flailing, kicking, punching, screaming "Dada!!!!!!!!!!!!!!!" and she even resorted to biting and clawing me. I was holding both of her arms so tight and she was fighting me, which was so hard. She kept screaming for Dada, but I was trying to explain to her that it wasn't Dada. He didn't even look like him! The man felt awful.

This went on for over a half hour, with the entire waiting room just looking in disbelief. I almost lost my mind. I told myself I had to keep calm because if I lost it in public, it would do no good for anyone. Finally, they called Ashley's name. I was about to go to the window and see if they would please take her sooner since Katelyn was having the worse meltdown she EVER had, and in public.

It felt awful to have her go through this, and it was certainly embarrassing to me since it happened in public, although at the time I tried really hard to ignore all of the stares. The worst part of all was that I realized that this was only the beginning -- there will most likely be MANY more days like this, and many more stares to ignore. That makes me so sad, not for me, but for Katelyn. Hopefully once she gets her diagnosis, we can proceed with therapies to help her (and me) in these situations.

Needless to say, I will never take the 2 girls to the doctor's office by myself again :)

It's a Date!!!

Yay! We finally have a date for Katelyn's autism evaluation. She will be evaluated on Monday, December 22nd, at 9am and it will take approximately 3-4 hours. We also have her feedback appointment scheduled for Monday, January 12th, at noon, which also happens to be Kevin's birthday - Happy Birthday, here is your daughter's diagnosis.

I feel some relief that we will have an answer soon and that Katelyn can start to receive help as soon as possible.

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.