Lily is FIVE!!

Well, I'm finally updating. Lily is FIVE! I always said recovery by age five and look at her now! She's not fully recovered of course, but she's EXACTLY where I knew she would be! She has overcome so much and I am so proud of her! Reading, writing (the best in her class! This from a girl who would scream and cry in frustration of having to draw even one line on a piece of paper), singing, joke telling, manipulating (mommy, PLEASE?!), negotiating (how about I eat my dinner and then have TWO cookies?), artistic (her drawings are getting to be the highlight of my days...her people actually wear CLOTHES now! LOL) are only a few of her many talents. It's hard to see the autism most days, with the exception of some short emotional meltdowns and her difficulty switching her attention to you if she is engaged in play or watching TV. Also she still has  difficulty with sound sensitivity (toilet flushing is a big no-no) but over all she does very well with the day to day and the things that she needs to work on (your typical social stuff) will come with time and aren't quite as important now as they might be next year or there after. She will be in a regular kindergarten class next year, which was always our goal.

Though Lily is far into her recovery, I think about autism daily. My other little girl wonder, Meadow (who is now 20 months old), is a constant reminder of where we once were with Lily. She's incredible and her ability to communicate effectively without much speech is amazing. All of the little things she does are so appreciated. Her sideways glance, her naughty nature, her call to everyone for attention, her complete ability to understand most EVERYTHING. Meadow could be the poster child for the "neurotypical". She went through some speech issues though (she still is, but it's too early to matter now that she's got the ball rolling). When I took her off bottled water and started giving her filtered tap water (she was about 8 or 10 months old I think), she lost most of her ability to make sounds. With the exception of Mama and Dada, she only ever grunted. I had her evaluated and she didn't show the natural pattern of speech delay, it was definitely something more. Meadow babbled as a young baby and her second word was not "Dada", it was "Lily". She also could say "cheese" and "baba". She stopped producing sounds. Luckily this was her only area of impairment. As soon as I came to the realization that it was our water that was effecting her (some people might think I'm crazy, but my gut hasn't been wrong yet...and there can be some nasty stuff in your water system these days and few think about that), I started ordering Zepherhills water and had a cooler brought in. I not only use that for our drinking water but I cook with it and use it to wash our fruit. I started giving her epsom salt baths as a natural chelator and it started to help her develop her sounds again almost immediately. It's been a couple of months now and she now says a hand full of words, and all kinds of "almost" words ("Paaa" for "Pop" for example) and can say "cheese" and "Lily" again. I can still sense her struggling to put sounds together that she shouldn't have to struggle for (for example, she can say each sound individually, but can't put them together....like she can say "mmmmm" and "eeeeee" but can't say "me". But she's getting there. I was never concerned about her "speaking", she's a bit young for that and everyone speaks when they are ready, but not being able to make sounds? Hmmmm....been there before, NOT normal.

Our kids systems can be soooo sensitive, I'm not sure why that is but one thing is for sure...ENVIRONMENTAL TOXINS CAUSE AUTISM. No one disagrees with that. Meadow has not had one vaccination yet, but has had her brain compromised by some kind of toxin. Lily's toxins were INJECTED in her in large amounts, hence the major damage and longer recovery. Toxins are everywhere in our world, especially in today's world. That's why virtually everyone you know, knows SOMEONE affected by autism in some way.

Boy, she's come a long way! Here's a video from when Lily was 2.

No one will ever be able to tell me Lily must have been "misdiagnosed".  I'll post a recent video soon.

May 2011

I guess it's time for my biannual entry, lol. Meadow is now one and walking and chases after Lily all the time. She still craves attention from Lily and Lily is still hard pressed to give it to her, though Lily does clearly love her sister it's not all Meadow would like it to be. Time will help, and when Meadow can start verbalizing her wants, I know things will take a turn.

Lily was having a hard time with her anxiety over pretty much everything and it was hindering her progress at school. Meltdowns around every corner. It is so hard to watch your child cry and become upset over trivial things. Having to go to the potty, wash hands, pick up a toy, get dressed for school, transitioning to another activity etc. To everyone else they are trivial...to Lily they are things that trigger emotions in her that she just can't control. So after trying everything that I could think of and her teachers doing the same, I decided to bring her to the doctor so that she could get some antianxiety medication. BINGO, a home run from the very first dose! Her body is very sensitive so it doesn't take much to affect her. Her teachers were thrilled, as was I. She started to get more hyper during the day and had trouble settling down at night, so I increased her trazodone in the evening and that seemed to help a lot, but by 3 or 4pm she seemed overtired so naptime for everyone! It makes her bedtime later, but her body seems to like that schedule. Last year she used to nap from 2-6 and then sleep 8 hours at night.

january 8, 2011

Where do I begin? Lily is doing awesome, as usual. Things were rough with her relationship with Meadow for awhile. It was so hard to watch Meadow crave Lily's attention so badly to just have Lily reject her. We tried every kind of encouragement we could think of. I even tried bribing her to spend time with her, thinking if she only started the interaction maybe it would increase...no go. Meadow tried so hard and now that she is crawling she can literally chase Lily for attention. Sometimes Meadow would just look at Lily and laugh (her only hope of Lily looking her way). It worked initially, and then it stopped. Lily's resentment towards her sister was just too great.

Now? Things have FINALLY made a turn around. We were all stuck home sick for 2 weeks over the christmas break. Lily had no where to go to get away from her sister. With lots of positive reinforcement and lots of time together things began to improve. A friend of mine suggested I write Lily a "social story" outlining her "story" of getting a sister and how great it is to have a sister, what you can do with a sister etc. I wrote up a pretty lengthy one and included lots of pictures of everyone and Lily LOVES it. She calls it her "adventure book". It made all the difference. Lily actually shows excitement to see her sister in the morning when they get up. She recently invited her to play and introduces her to strangers at the store when we are out.

Have I mentioned that Lily is READING!? I can hardly believe it! She is really very good and it is so wonderful to listen to her. She recently is doing better with writing, though she still has a lot of difficulty, she loves to connect dots or trace letters and numbers. She actually asked me yesterday if she could color...wait...isn't this the girl that HATES to color? Lily LOVES to do arts and crafts and loves to work on workbooks that I buy for her at Target in the dollar section (whenever I happen to see some).

Lily did better going back to school this week. For the past few months she really had a hard time with going to school and would have meltdowns in the mornings ranting about not wanting to go to PE, or do table time or have to go to the potty at school. I really think all those were excuses and that she just couldn't voice that she wanted to stay home with mommy too. I think she was jealous of Meadow. Since her relationship with Meadow got better, so did her outlook on school...coincidence? I may never know for sure.

Lily is changing in so many positive ways. I'm hard pressed to come up with other things to work on with her...yay! She still has difficulty following a point, so I need to describe where things are instead of pointing. We will continue to work on her writing, that part of her brain needs a lot of repair. Auditory processing is going to be her longest hurdle, but she improves every day.

Well, it has been a good long time since my last update. Lily's little sister Meadow was born and is now 7 months old, and Lily just turned 4 years old two days ago! First I wanted to update on my last zinc suppliment comments. Lily was taking Zinc Picolinate (I have no idea what that is exactly) but Lily's response was to the picolinate, not the zinc. We switched her to regular zinc and the changes have been even more astounding.

Lily has had a hard time adjusting to being a big sister. At first she didn't seem to mind, it felt to me that Lily considered her an accessory. THEN reality set in. Lily was a handful for a number of months. Getting into EVERYTHING and making a mess everywhere she went. She didn't want to listen and even went through a period of time where she actually ignored me completely and wouldn't look at me. It wasn't as though she wasn't getting enough attention, it was that she was not getting ALL the attention...which I suppose is pretty normal for most any sibling. She didn't want to have anything at all to do with Meadow and refused to even look at her almost at all.

Recently she has done so much better. She has been listening better and is so much farther down her road to recovery! Basically her main obstacle is her auditory processing. She still has some difficulty understanding some questions and her self expression is a continued struggle for her...but she is doing so wonderfully. She talks in full appropriate sentences about 80% of the time and the other 20% is coming along. She has picked up so many different phrases and uses them so appropriately (she is our little comedian as well, always making us laugh). She LOVES school this year and can finally enjoy a lot of her day instead of struggling over simple things. Lily is now potty-trained!! I never thought that day would come but about a week after school started this year she transitioned to underwear 100% of the time! Woohoo!!

Lily is following direction and I can't say enough positive things. I still make her a bottle everyday, since that is the only way I can get her to drink all of her nasty suppliments (mixed with infant formula still...yuck!). I left her room to make it and a few minutes later she yells from her room, "Hey mom! You got that bottle yet?!" Last week Lily asked her daddy for a snack. She said how about popcorn? Daddy said no. She said, how about cookies? Daddy said no. She said, how about an icecream sandwhich? Daddy said, "Lily, are you hungry?" She looked at him and said, "you think?" LOL. She also put herself in her own timeout after getting busted for something she knew she shouldn't be doing. She went and sat down and said, "I'm in a big timeout."

Lily now introduces herself and has to make friends with everyone. While we were at the pool she decided to go over and talk to a group of teenagers, AGAIN. As I went over to relieve them, I heard her say, "my name is Lily....your name isssss???" Then she introduced me to them by saying their name and then saying, "this is my friend Mommy". SOO cute. I went over there another time and she turns to me and says, "mommy, say helloooo to the guys!"
She has been asking tons of questions, but she hasn't been asking "why" questions yet. The time will come soon enough and it will be bittersweet for sure, lol.

3/1/10

Children on the spectrum are so different from the "typical" crowd. This goes without saying, but I am AMAZED at how differently their bodies process substances both natural and foreign.
I feel that babies are wired a certain way when they are born. They are a blank slate and some have the "potential" to develope autism if they are introduced to things that their bodies can't handle as well as "typical" children. Their immune systems are a large part of this, but I think it's more than that. Children on the spectrum are lumped together in a catagory, but they are also individuals that have such different body makeups. They each respond so differently to what they come into contact with. It's hard to "crack the code". It's a constant trial and error with each child to see what might help them to improve. Some kids do better on "the diet", some don't. Some respond to certain therapies, some to biomedical interventions or a combination of both. Some children don't appear to get better no matter what, some children respond amazingly well and lose their diagnosis completely or respond somewhere inbetween. The term "spectrum" is used because children can be highly effected by autism, mildly, or anywhere inbetween. I think "spectrum" fits beyond that for any number of reasons.

So what am I getting at? Well, I am constantly surprised by such little things that seem to effect Lily in HUGE ways. Some that don't even make sense to me, and CERTAINLY don't make sense to Dr.'s (makes them skeptical even, or think I'm crazy), but I KNOW my child. I'm with her and see the cause and effect everyday. I even play around and test my own hypothesis. I've been doing that since I first noticed Lily was "different". I don't care if it doesn't make sense, as long as my little girl keeps excelling.

Lily's DAN Dr. has been trying to get her zinc-to-copper ratio more equal. Her copper level is much higher so she is on a zinc supplement. She was found to need even more zinc, so we upped her dose from 1 capsule to 1 1/2 and she had been on that for months. We tested her again and her zinc level actually went down instead of up. Due to this, we recently upped her dose to 2 capsules at his suggestion. After a week I began very frustrated with Lily's behavior. Her eye contact and attending went way down and her frustration level over little things skyrocketed into total meltdowns for seemingly no reason. I didn't correlate these two things initially. I was talking to Anthony and said, "I don't get it. What changed this week?" He reminded me that we had increased her zinc and I just couldn't believe that something like that would have such an effect on her, but for the heck of it thought we'd cut the zinc back. Not just to the previous dose, but cut it back to one capsule to see what kind of a difference might happen if 1/2 capsule increase made her so much worse, why not take somemore out and see if we get the opposite reaction?

TWO days on only 1 capsule and my girl is talking in MULTIPLE FULL SENTENCES. She is responding, engaging, and "getting" phrases and conscepts that she didn't previously. I came home from work last night and was amazed!
Here is just one example of something she said:

"Where is my blanket? (goes into her room) Oh, I found it! It’s right here on the bed! (comes out of her room) Look what I found!"

Now don't get me wrong, she's not speaking perfectly all the time, but what an improvement! She was able to tell me what she did today and answer most of the questions that I had for her.
Where did you go today?...To the Park! What did you do there?...Eat fish. Oh, you fed the fish?...Yep. What did you feed the fish?...Bled! (that's bread, lol) Lily ate Bled too!

Where has been something she has been understanding, but the concept of "what" has always been more difficult. Back and forth conversations are generally a struggle for her and she just rambled things off like it was natural for her.

Here are a few other things she said last night:

Where is the ball? I can’t see it.
I’m hungry. Want a snack. Want some bread (pronounced “Bled“)
Turn the music off Daddy.
This ball is different! (comparing two balls)

To be honest she just continued to amaze me and I couldn't keep up with everything she said then and even this morning (she got up happy as can be at 4am). Nothing is better than watching your child blossom. I feel so blessed today!! I know she will continue to do well. I watched some old footage of her last night and can't even believe the difference.
I wonder how she'll respond after her sister is born? I'll find out soon!

2-7-10

I know that the blogging has been few and far between. I really wanted to be better about updating, but I haven't been getting as much sleep as I'd like, so I've been taking every opportunity to take naps when I can. With only 5 weeks left before Lily's sister is here, there has also been a lot to prepare and a lot of appointments to go to.

Lily has had her ups and downs but all in all has been doing wonderfully as usual. Her speech is coming along very nicely and she is using more sentences and putting more thoughts together. She has a much easier time communicating, though there are times we still have no idea what she is talking about (I think that's still a probably some of her typical peers share as well).

Lily's echolalia is gone, at least at home anyway. Apparently Lily is having a hard time processing information at school, because her echolalia is still very much present at school. They are also concerned about her speech, in that it has not improved. All this is puzzling to me since she does so well at home, so I'm going to need to figure out why she does better at home than at school.
The good news is that she now qualifies for speech services and has started to get speech therapy at school twice a week.

Here are some of the cool things that have been occuring lately:

• Lily said today that she was hungry! (oh, the small things that mean so much...FINALLY)
• Lily asked Daddy yesterday to COLOR! (this has always been an activity that she hates and struggles with) Lily actually DREW some pictures and used multilple colors. I was so excited to see this when I got home from work yesterday!
• Daddy and Lily went for a walk today and Daddy asked her where the bird was and she said, "Right there, next to the pond!"
• When Daddy and Lily went for a walk and they came to a fork in the sidewalk she asked, "Do we go this way, or this way?" and pointed in each direction.
• Yesterday, Lily was upset because I was at work and she had missed me, so she was crying and said, "I wish mommy home! I wish mommy hold you" (it's so nice when she can verbalize how she is feeling and share why she is upset).
• The other day Lily put the head of one of her princess figures into her mouth and said, "Hey, it's dark in here!" (I always get excited when she's playing and doesn't use scenes from movies as her dialog)
• Lily sat in her highchair and said, "want snack" and I asked her if she wanted some banana and she said, "want raisins" (most people would think nothing of this, but she has NEVER before asked for something specific that was actually good for her!)

More to come later!

Pic

For anyone who knows a child that has autism, you know how hard it is to get them to look at the camera AND give any kind of smile!

12/21/09

Well, we've done quite a bit since the last post. My mother came down for a visit for a week to help me get better organized before Lily's sister gets here in March. Lily just LOVED being with her Grandma and often preferred her to me, which is a definite first but also a welcome break! Her Grandpa came into town as well and Lily was so excited to see them both in the same place (a first for her) that she promptly made introductions. She took "Papa" by the hand and brought him over to Grandma and said "Papa...Grandma" and made them shake hands. It was very cute.

The following week, Lily and I went to NY to visit family for the week. Lily was a complete angel the whole time! Lily really seems to excel around family, so I planned this trip after the last time we went to NY. Lily was very engaging and so excited to be around everyone. Everyone could see the difference in her from the last visit. Lily has been really into the movie "Elf" which was great because it's a favorite in my family. Lily's vocabulary and speech often comes from her favorite shows and once she knew what phrases she could say to entertain everyone and make them laugh, she wouldn't stop! Her eye contact and interaction with everyone were incredible. She really wanted to be sure that everyone in her audience was enjoying her performance so she made sure to eyeball everyone and for anyone who tired of laughing after the 5th take, she would look at them and say "Laugh!!". Even on the plane ride to NY she was using her "Elf" words and phrases. She really enjoyed bothering the woman behind us who was clearly trying to sleep. "What's your name? My name is Buddy!" was her favorite phrase. She also liked to tell her "Hi!" over and over again. I tried to occupy her with a DVD and as soon as she put the headphones on she looked at the lady and said, "May I help you?" (McDonald's influence perhaps?") I think my greatest surprise about the plane ride was the fact that we were right by the engine, so it was VERY loud, but it didn't seem to bother her. The noise was even louder in the restroom though and she made it very clear while we were in there that she wanted OUT.

Lily got to play with all of her cousins and they all just love her so much! Lily asked to go home almost every day though, usually upon waking in the morning. One morning she looked at me and said, "Mommy, let's go home." other mornings I wouldn't get the full sentence, I'd get "Home, Mommy". Lily got to experience snow for the first time! She could NOT get enough of it. The first thing she did was pick it up and throw it. She soon figured out how to make snowballs and LOVED making snow angels. Every time we were traveling from one place to another she was always so distracted by the snow that I had a hard time getting her in the car.

After we finally flew home she had a rough adjustment period. She tantrumed quite a bit and seemed to get frustrated quickly. Luckily that subsided after about 3 or 4 days. She LOVED the Christmas tree that Daddy had set up for when we arrived home. She kept bringing us to it just to stare at it and declaring, "Christmas Tree!" She loves it so much I have actually seen her try to hug and kiss it too. She has been taking some of her own toys and trying to "decorate" the tree with them.

We went and saw Santa this week. My poor girl. I wanted to prep her for that ever popular question of "what do you want for Christmas?", so we talked about it and she decided on "Tinkerbell Toys" and I went over that question with her a few more times before she saw Santa. Well, he never asked and she assumed that Santa was going to give her Tinkerbell toys, so she cried when we were leaving the mall and again when we got home. I felt so bad! She has no way of understanding that Christmas is not here yet.


Lily's preschool class had a Holiday party and the kids sang songs and Santa came for a visit. It was truly adorable. When the class walked into the room they went to their seats and each child scanned the audience for their parents. Lily looked around for a while before she finally spotted me and the look on her face when she did made my heart melt. From that moment on I knew that I could never miss any events like this because she would just be so heartbroken if she didn't get to see me. She was so excited that she immediately got up and ran to me. After going to sit back down she kept looking at me with the best smile and waving.

The last time I was there and the class sang songs, she just sat there with her fingers in her ears. She didn't do that this time!! She actually participated (as much as she could, there were a couple of songs she didn't know because we had been in NY) but what she didn't know she swayed to and clapped along with a huge grin on her face. She even looked at me and said "Sing Mommy!". It was wonderful.

Lily just continues to blossom and everyday astonishes me with new words, sentences and skills. Her imaginative play is one of her best attributes. I LOVE to watch and listen to her play. The other day she sat her stuffed animals around their table (a square pillow) and set up a tea party for them. She then fed each of them their "cake". I have a reindeer headband for Lily that I put on her stuffed piggy bank. She started calling him "Dasher" and tried to ride him around the living room, lol.

I can't wait for Christmas day. It will truly be a great time watching Lily get all excited and opening her presents. She has been having such a great time with her Nativity scene and loves all the Christmas stories that we have been reading to her. We will celebrate Jesus's birthday with some cake and this year she will actually be able to sing "Happy Birthday" to him. A birthday party and christmas all wrapped up into one. It doesn't get any more exciting for her than that, (or for me)!

We celebrated a wonderful thanksgiving with friends and Lily is no longer sick and will be going back to school on monday, yay!
One thing I forgot to mention on the last blog that Lily did was that she "read" anthony a story. She did pretty well for her first time. It was a board book from CARS and she turned each page and said something for each page.
Lily was especially rambunctious today, so we went to Jungle Bounce (bounce house place). Unfortunately we had to turn right around and leave because she couldn't handle the noise that the machines made that blew up the equipment. She wouldn't stop plugging her ears and literally asked to go home (I want go home). At least she's communicating using more words now (that in itself has greatly improved the last few days), but it was very heartbreaking that her sound sensitivity is keeping her from an activity that I know she's always greatly enjoyed. I'm not sure how to help the situation. It's been a while since we've been to one of those kinds of places but we've been more times than I can count and it's never bothered her before. I wanted to bring her to a carnival that they were having locally and now I'm thinking that we're going to be needing to think about noise level before we go anywhere. Just another thing...