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.
Saturday, October 16, 2010
Monday, March 1, 2010
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!
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!
Sunday, February 7, 2010
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 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!
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