Why I'm Blogging...

Our Little Lily:

Lily has not had your typical acheivements that most kids have. Lily's motor skills have always been on target, but she's always seemed to lack those natural connections for information that seem to start by or around age one. The idea that objects have names, how to form sounds (she had, then lost after turning one), the meanings of "where"and "what" (just to name a couple). The difference between someone she knows or doesn't. How to point or gester. How to relay her wants. Responding to her name. Copying an action or facial expression. Understanding simple commands like "bring this to Daddy" or "go get your cup". Being able to identify objects or body parts. These, among SO MANY others, are concepts that have been difficult to teach. But with help of Chelation, she has BLOSSOMED!

I wanted to Blog all of her information for a few different reasons. I want to keep track of her outstanding progress, share it with family and friends and use the blog as an outlet to let others know how we are feeling. And also, most importantly, as a testiment to what chelation can do. It has and continues to unlock so many areas of her brain. Unless you see it for yourself it can be hard to believe but this product has been a true miracle for our family. Family and friends that have seen her and seen the difference know and I want for others to know too.

Some Background and History:
I knew Lily was different early on. Very little eye contact or interaction. She seemed like she was in her own world much of the time. But the worst came just after she turned one. She regressed. Gone were the only 3 words she knew (mama dada and baba) and her babble stopped COMPLETELY. All day long she said only one sound..."aaaaaaahhhhhhhh" (irronically, her eye contact improved greatly at this time, a mystery to me).

Early on Lily never had texture problems. She LOVED sand and paint, mashed potatoes, anything messy. She quickly showed trouble with getting ANYTHING on her and would cry and cry if made to touch anything (sand, play dough, grass, most foods, paint, shaving cream, etc.) Lily was never one to respond to her name or much of anything. To get her attention you literally had to be right in front of her face, and even then sometimes she'd look right through you. She started spinning, lining her toys, hand flapping, teeth grinding more than before, doing her "eye thing"as I call it, and generally displaying all the classic signs.

I recognized she was on the spectrum. It took a long time for Anthony to come to grips with it. He wouldn't deny it, but he wouldn't except it until he actually read the signs of autism and realized our daughter matched 12 out of the 14 characteristics on the list he was reading.

At her 15 month checkup her pediatrician recommended she be evaluated since she had shown signs of regression. A friend of mine had talked about a program called Early Steps that does screenings for developemental delay and gave me the name and number of a woman who does them at the hospitals from time to time. I made a phone call. Two weeks went by, no return call. Maybe the woman was on vacation. I called again and left another message. Another week went by, nothing. Then I decided to call a different number for a less direct route, they took my info and said they’d call back. At this point I made her an appointment to a private office and paid out of pocket for her eval. She was found to be “severely” delayed. I knew she was delayed, but I wanted a second opinion. At 17 months the "therapist" told me she should be saying 50 words and that she would need intense therapy that would be expensive and recommended I look for services through Early Steps. I thought that 50 words was a little over the top but I also knew that no words and no sounds = a problem.

Early Steps called me soon after that and I had a “screening” shortly scheduled. After that I think I waited about 6 weeks for the actual eval to be done (6-6-08). I also had her hearing checked, as a formality, I knew it would be fine. After that it about 2-3 weeks before her speech therapy began, which she has 1 hour a week (and goes into an autistic mess during the sessions because they stress her out so bad. She does not regularly react so prominently during regular day to day happenings because I don’t push her, since stress seems to only cause regression in her behavior).

Some Side info: I tried her in a Montessori school part time the third week of July for a few days and her behavior regressed and she actually refused to get out of her crib the fourth morning and cried and cried and would not cooperate with the routine of getting dressed, diaper changed, hair combed etc. Once she realized she wasn’t going to school she was a completely different child. I decided that she is just a little too young for that yet. I thought it was funny that first day I picked her up, the teacher said to me, “We think she can’t hear”.

I have done a lot of reading and research on autism (as virtually all parents in this situation do) and I came across a product called Kids Chelat, heavy metal chelator, on the website www.evenbetternow.com.

I believe that Lily’s immunizations/flu shots played a large role in her decline. People can say there is no correlation, but I feel strongly that the toxins they use as preservatives in the injections (however minimal) “triggered” it due to a genetic predisposition in addition to having GI problems, which she has had since birth. Because I felt this, I figured this form of chelation would be a good product to try. Nothing else to do but try to reverse the process, right? I tried it this past May for about a week and she started to say dada again! 7 months with NOTHING, you can imagine how excited Dada was, but she didn't seem to understand "who" dada was. It was only babble, but still exciting. Lily began to be very fussy and stopped eating (not knowing why I stopped the chelation just in case). After about a 5-6 week stretch she was less cranky and her appetite came back. It's hard to know with toddlers what is what, but I came to find out all that was because of a HUGE growth spurt and teething .

I started her back on the Chelation July 5th and I regret I ever stopped giving it to her in the first place! She has excelled in SO MANY WAYS!! Every single day she gets better. I cry tears of joy now instead of sadness (which happened A LOT). She started babbling after just a few days and began saying mama! She went from no babbling (though she did continue to say dada from time to time), to babbling all day with different sounds (yay!) and now says mama and dada regularly.

The following progress occurred during the first month:

Asks for her baba, waves bye bye without any prompting, said "Lion" and "roar", replied "YUM!" to some icecream cake, and has said "all done" when she was finished with her lunch. She is so much more alert and looks at everything (including herself in the mirror which she would not do before) with new curiosity and wonder! She has even been able to show me where her "toes" are (by raising her foot and wiggled her toes!) She now knows "who" dada and mama are. The concept of "where" has been difficult to teach her, but she is starting to understand! I have watched her make faces at herself in the mirror and stick out her tongue! Only parents like me can really appreciate those small things :) and just know how really huge they are. She can now blow a flute and blow bubbles (and understand the word "blow") She has said "hot" a couple of times, once while her bath was being filled up! She has shown more "copying" behaviors (wanting to do what I'm doing). She is starting to follow direction and actually understand me and instead of just crying and me having to figure out what she wants, she has started to try to show me what she wants! She laughs so much more now, an honest, genuine laugh. And she LOOKS at me, right in the eyes and for once there is a connection there. Oh, and she has also FINALLY gotten "stranger anxiety". NEVER before did she know the difference between a stranger or a loved one. She would go to ANYONE and want to be picked up, true strangers that I didn't even know. Now she looks to me to tell her if the person is ok to go to and if she is with someone she doesn't know and I'm not in her direct line of view, she’ll start to cry (though it has been improving). Teeth grinding has stopped completey. She still does her "eye thing" from time to time. All this progress in just one month!!!

The following has been her daily progress since then:
8/7/08
Lily said “Duck” 3x in a row, while pointing to the duck on the mirror (though this was copying what I had just done) Future attempts to say “Duck” were said as “Du”, but with no understanding of what that word correlates with.

8/9/08
Can copy making noise with your hand and mouth as well as with the lower lip.
After getting wet, I put Lily’s hooded robe on and she said “Ha, Ha” and did the sign for hat!

8/11/08
Showed jealousy for the first time at playgroup when another little girl was on my lap, Lily tried to push her off. Others noticed that Lily was more aware of whether or not I was in the room, when she would look for me, spot me, give me a big smile and then come barreling over to give me a hug!

8/12/08
Lily said “Bubble” Lily has been routinely following instructions on sitting down when asked. She was also able to follow some direction for “come here” when bribed with stickers. (Usually a difficult thing for her to pay attention to me, even with a bribe, but I was able to get her to look at me when I asked her to instead of being ignored no matter what I did).

8/13/08
Today Lily said “bubble” for the second time! She is also improving on her nonverbal communication. She wanted me to open a plastic container for her, so she placed both my hands on the container, patted the container twice with her hand and looked up at me. When I wouldn’t immediately comply (I wanted her to try to open it) she repeated her request in the exact same way! Also during bath time Lily showed no signs of turmoil when presented with shaving cream. On the contrary, she smeared her whole body with it, “painted” the side of the tub using both her hands and feet! This was after smearing her whole body with body paint and finger painting the tub with a multitude of colors! Not one unhappy bone in her body, she couldn’t get messy enough!

8/14/08
Today Lily was pulling at her diaper because she had just filled it. I said, “Did you peepee in your diaper? Come here and let me change your peepees.” She then pulled at her diaper again and said “peepees”. Today she followed direction by lying down every time I asked her to, to change her diaper. I usually have to chase her and she is usually unaccommodating. Her engagement with me really increased today, as she often came up to me and showed interest in whatever I was doing. She is also shaking her head “no” more often and possibly did her own version of “all done” (signing) when she was done eating. Lily was in an outstanding mood today and smiled and laughed most of the day.

8/15/08
Lily laughed so much today! She seems much less frustrated and seems to have a better understanding about the world around her. Part of me feels like her new awareness is happening so quickly that it is causing her to be over stimulated, resulting in her drastic increase in spinning during the past 10 days or so. Redirecting her with that is becoming more difficult. I find that when she gets overly excited she spins and does her hand flapping. It can be going out to a bounce place for her to play, or seeing me return from being away (even if it was only a bathroom break!) Lily had no texture issues today as she assertively played with a bunch of play dough. Without any instruction she actively squished it through her fingers, flattened it, etc. She was having fun! Today she made an attempt at repeating several words (for example, I said “tug of war” and she made an effort to try to say that a few times). She said “bob” maybe 4 different times today, but never in reference to anything that I could make sense of. She is also showing fear (aside from stranger anxiety). When we went to Inflate World she was scared to go down the slide by herself, something that has always been her favorite with no anxiety over. She also did much better in the car today, doing a lot of giggling and singing (rare for the car).
Lily also “asked” me again today to open a container for her!

8/16/08
Lily did SO MUCH today!! I unfortunately missed most of it while I was at work.
Lily wanted her Winnie the Pooh magnets so she got the case and was trying to figure out how to open it. Anthony said “Lily, bring that here and Daddy will open that for you. Come here and let me help you.” So Lily brought it to him and intently watched how he opened it! Also she started to point to things in books today. Mind you she wasn’t able to pick out objects with accuracy (with the exception of one book), she still pointed to the different things in the books! Pointing, yay!! In her Backyardigans book she was able to point to Pablo on every page!!! Lily found her play dough today, open it, brought it to her table and started to flatten it out. Lily has been doing such a great job playing “appropriately” with toys, but not always. Instead of rolling her cars she likes to match them up and put them in a row. She still does a lot of lining things up, but I think she spends almost equal amounts of time lining things and playing appropriately which is a huge improvement. She has also started making a habit of going to her high chair to let us know that she is hungry. She also said “Bubble” again today.

8/18/08
Today I said, "Lily, what is this?"(I was holding a hat) and she looked at me and made the sign for hat! So NOW she is learning "what" and that things have names! She was also able to pick out her goofy magnet several times when asked where goofy was. Also she knows the word "where" now! She can pick out Pablo anywhere, not just in the book, yay! I also told her to turn the TV off today and she went over and turned it off! Also I was able to vacuum without her crying and vacuum RIGHT NEXT TO HER and it didn't phase her a bit!! She also signed for "more" and also said "all done" (though I'm not sure she gets what that means, because she still kept eating). Lily also can point to her eyes when you ask her where her eyes are!

8/19/08
Today was Lily’s “AHA!” Day. We went to the Developmental Pediatrician’s office today and she did VERY well. I never even had to use the emergency toys I had for her! Her attention span is really improving and she is just figuring out SO MUCH. Today I think she realized that ALL objects have names becasue it seemed like she wanted to know the name of everything. She would point to different things or characters as if asking me what they are and started to remember some! She laughed and laughed today and we had so much fun! She didn’t have any tantrums and had much more patience for things. I am so proud of her! She is finally starting to make some serious connections that seem to be triggering more, like a domino effect. She can point to her nose too, though she still needs a little practice. She did FANTASTIC with her shapes sorter and has one almost completely mastered. Instead of trying a shape in every spot to find which one fits, she is able to look, see where the shape goes and just put it in (circle, triangle and square) but she’s still having a little trouble (understandably) with the cross and the star (getting them mixed up) but I’m sure she’ll figure them out soon enough.

On a behavior note: She has been doing this thing with covering her eyes with her arm. She started a couple of weeks ago but it has been increasing in frequency. It's almost as if she does it when spinning is not an immediate availability (she's sitting or laying down). She's also just today, been examining her hands often as well (coincidentally a question I answered "no" to today when asked if she does that).

Now you are caught up for the most part, and I will be logging more of Lily's progress daily. I really feel if she keeps up the progress at this speed that she will be greatly caught up within the next year or two!