Bio-medical intervention

I just wanted to add a quick update on Katlynn’s progression. She is doing quite well with ABA programs and is in fact going through them so fast they have to implement new ones every couple weeks if not sooner. Her words are coming so fast. She still needs a lot of tweaking on her language and pronunciation, but she is doing really well and getting much better at asking for what she wants. She is really into counting these days and saying her ABC’s. They are not always in order and she’s rarely completing them, but getting there and it is huge progress. She loves books and asks specifically for a certain police book every night. In fact, I have now checked out this book for 8 weeks in a row and thankfully, no one is requesting it. If someone does, I think I will have to go out and buy it for her.


I still have been torn with going down the bio-medical path with Katlynn. It is something that has been sitting in the back of my mind for 6 months now. If you are familiar with biomedical intervention and Autism, you will know what I am talking about. If you are not, then I will give you a quick course on it.
Some specialists believe children with Autism have bodies that are overwhelmed by a combination of heavy metals (mercury, lead aluminum), live viruses (particular from their vaccines), and bacteria. These toxins serve to slow or shut down normal biochemical pathways in the body and lead to the physical and mental manifestations. The ultimate goal of biomedical treatment is to remove environmental toxins from your child's body and repair the damage that has been done. There are many different routes you can take to do this. It can vary from supplements and medications to injections. It can even get a simple as changing to a GFCF (gluten-casin free) diet. Many parents with children on the spectrum swear by it, so I am contantly researching and reading up on it.

I went to a doctor (closest thing to a DAN I could get) back in Feb as asked several questions about biomedical, as I am not a pill pusher and very anti-medication if at all possible. She told me based on the blood and lab work, Katlynn didn’t seem to have any allergies to gluten or dairy/casin and everything else seemed to be very normal. I didn’t have her tested for metals because it is very expensive and from what the  Dr. told me, her odds of having a high metal count and anything lowering it to make a drastic difference was slim to none and she suggested I not fork out hundreds of dollars trying to do it since there is little known proof about metal levels in the body and autism. Dave and I decided to not do the labs for now. We figure since she is making so much progress with ABA alone, we didn’t need the added stress of medical bills on 1 income. She did recommend the most natural route which was GFCF. We had already tried it once a few months ago and it was a terrible experience. We all hated it. Katlynn was miserable for 3 weeks. Nothing changed. So we stopped it. I am not opposed to trying it again someday though. Just have to get everyone else on board to commit and follow through. If not EVERYONE in my house and those who watch Katlynn once in a while are going to stick with it…. It is pointless.

I have gotten into a few debates over bio-medical the past few months with other parents. People who have pushed it on me and when I decline have said I was selfish for not doing everything I could for my daughter. But in reality, I have more than just 1 daughter. I have 3. I also have a husband who is the sole provider. I had to think about the long term and how forking out thousands of dollars trying to cure (or recover) Katlynn was going to affect my family. Do I wish I could do more for her, of course I do. I think I have done quite well getting what I want out of my insurance company, the county and the school district. I still have a long way to go and I will continue to fight for her rights and be the sqeaky wheel. I will learn everything I can from every therapist she sees so that I can continue to help her when she isn’t doing services. I just had to draw the line somewhere. I had to make a conscious decision about what I thought was best for Katlynn.

So it is not that I am opposed to the Bio-medical intervention. It is just that I am not taking that route as of right now and she is still making tremendous progress without it. I figure I will go with the motto, “if it ain’t broke, don’t fix it” for now.

I am still extremely greatful to the TACA organization for all the vital information they have provided to me on Autism and helping children with this condition.

So keep checking back…

Autistic or Autism?

Which is proper you ask? Well, that depends on WHO you ask. To some parents is extremely offensive if you call their child autistic. It is “labeling” them. To me… it is merely one in the same. I have bigger fish to fry then to spend time complaining how you want to label my daughter's condition. Whether you call her autistic or say she has autism, it's still the same dang thing. She still has it and it is not going to change the diagnosis if you call it one or the other. So don’t feel as though you have to walk on eggshells with me when talking about autism or autistic children or when referring to Katlynn. Honestly, I don’t give a damn which one you want to use to describe her. I am just happy to hear when people are interested in talking about her condition.

Fast forward to the present!!!!

So… I am going to fast forward to the present since we all know Katlynn’s diagnosis; I won’t get all technical and medically related.

She is currently approved for 80 hours of ABA or applied behavioral analysis a month. It has been working wonders for her. She went from virtually no eye contact, communication and very little socialization to blooming in all areas. She is now starting to point and ask for things she wants while maintaining eye contact. She is using toys in proper play and form and is also becoming much more social with us and her peers. It is a true delight to see her smile, laugh and light up when she is happy. Tantrums and meltdowns are now rare. To be honest, she is the best behaved out of the 3 kids both at home and in public. The other two have become quite the handful and if anyone wants to borrow a kids or two for a day, I would gladly hand them over. Katlynn has finally stopped fleeing anywhere and everywhere and will listen when I prompt her to stop. She is still climbing some, but not like she was.

She is also currently receiving OT through Kaiser which helps with sensory and motor skills. We are hoping to find out in the next week or two if she qualifies for speech services. I have been fighting for all these services and while it has caused a lot of stress and anxiety on my part, it is proving to be working in her favor.

She will continue all these services until she meets the goals we have set for her.

She can now say a few of her ABC’s and count to ten successfully. She has also had some success going pee on the potty before bath time.

Both Katlynn and Audrie will start preschool in August 2010. I am hoping they will get into school together and it will provide the special needs for Katlynn while also serving typical preschoolers like Audrie.

What is Autism?

Well if you would have asked me that in 2008, I would have responded by saying, "Some disorder kids get from shots." Because of course 2 years ago, that is what all the hype was about. Autism was caused by vaccinations.

What is Autism you might ask. Autism is a complex developmental disability that typically appears during the first two years of life and is the result of a neurological disorder that affects the functioning of the brain, impacting development in the areas of social interaction and communication skills.

I have a daughter with Autism. Her name is Katlynn and she is 2 ½ years old. We nicknamed her KK and she is our little redhead princess.

I will start by saying that I will probably use the abbreviation ASD a lot. It means Autism Spectrum disorder. There might be a few other terms I use on here relating to autism you can just google if you want to read up on what I am talking about.

So, recalling back to when Katlynn was 1 year old, I didn't even think about autism. Sure she had some developmental delays which caused me some concern when she wasn't even 1 yet, but her pediatrician assured me I had nothing to worry about when I addressed my concern for her delays. Katlynn was forming words, babbling a lot and seemed to have good eye contact and was social interactive, but she wasn’t crawling and seemed to be falling behind her sister in fine motor. So I wasn't overly concerned but kept my eye on her. Again, at 15 months I asked the Dr. about my concerns and again she blew me off. She told me Katlynn was within the normal range and if she still wasn’t walking at 18th months she would look into it. Well this momma bear was not having it and I got to work.

First thing on my list… demand a neurology referral from that pediatrician and then seek out a new pediatrician because this gal was officially on my shit list. The neurologist referred me to Inland regional Center, who evaluated Katlynn and put her on services for Infant education, speech, and occupational therapy. Katlynn did finally start walking at 18 months which was about 2 weeks into her therapy services.

We were on the services for about 5 months when I realized, she was making progress, but just not enough to suit my needs or the needs of the infant educator. She introduced me to the autism spectrum umbrella and informed me that she was seeing a lot of red flags in Katlynn for PDD-NOS (pervasive developmental disorder-not otherwise specified) and possibly classic autism. So, I knew it was time to call out the big dogs and I went back to my NEW pediatrician as asked to be referred to the autism clinic through Kaiser.

Some of the things I noticed with Katlynn that lead me to pursue this appt were:

Poor eye contact

Head dragging

Non -affectionate (resisting hugs and cuddling)

No interaction with her siblings and not even much with her father and I

Speech delayed

Sensory problems

Seemed like months before we went to the dreaded appt. When it finally came they assessed her and told me they would contact me with the results.

In early August 2009, Katlynn was just over 2 years old and we went in for the results to the test. Sure enough, I would receive the heart wrenching news my daughter was diagnosed with classic autism. I was in a cloud for what seemed like eternity. I was devastated.

I felt as though my world came crumbling down. I was pouring my nose into every book on ASD’s/autism, treatments, recovery, etc. I would watch videos, contact resources, and take any advice I could get. It was all such a blur. I got sucked into Jenny McCarthy’s cure/recovery process and everything. It was taking over my life in a matter of weeks. Finally, I grounded myself and realized I needed to be a mom and a wife first and then an advocate for my daughter second. After all, I had a husband and 2 other daughter’s wondering what the heck was going on with mom.

Finally, after talking to so many other parents of children with autism, I decided ABA was the most positive outlook for Katlynn. The regional center agreed to place Katlynn into an ABA program in Nov 2009.