tag:blogger.com,1999:blog-17640233163735797282024-03-13T04:29:14.638-04:00An Amazing JourneyIt truly has been an amazing journey watching my little girl overcome so many obstacles and always fighting to "find her words". Recovery from autism can happen.Chantal, Anthony and Lilyhttp://www.blogger.com/profile/16016676603803839322noreply@blogger.comBlogger83125tag:blogger.com,1999:blog-1764023316373579728.post-85835654626542039632012-10-02T08:57:00.000-04:002012-10-02T08:57:41.529-04:00October 2, 2012Ok, well a month has past and Lily is doing GREAT. Because of her limited diet, I have really been able to see her sensitivities. For example, there is an ingredient called xantham gum that is often used in gluten free foods. It can derive from several places, wheat, dairy, corn etc. Lily typically does not do well with this ingredient. She had some brownies that claim to be free of everything Lily can't have...but have this ingredient. Their website says that this ingredient comes from a source that makes it ok...well if that is the case than Lily can't have that ingredient under any circumstances because it makes her more hyper and less focused. So yet another, note to self.<br />
<br />
Because we went cold turkey with the diet and eliminated everything at first, it got me thinking about her allergies and wondering if it was all corn related...after all, corn is in almost EVERYTHING, which includes ice cream and yogurt. The new experiment: Give Lily milk (and only milk) related products to test the possibility that MAYBE she could have dairy? So I went on the hunt for some yummy ice cream and didn't find ANY that I could give her so I ended up buying Kefir which has ice cream consistency but is more tart and tangy than sweet. Can I have another bowl? ABSOLUTELY! A third bowl? Why not? How about some cheese sticks? Sure, have THREE :)<br />
<br />
Observation? Hyper Hyper Hyper....needing to climb EVERYTHING, no focus...she wouldn't follow direction. Then we climbed into the van to visit my brother and she wanted to read a book on the way. No big deal usually, she's been reading for a couple of years now except now, "Mommy my eyes won't focus! I can't read this!" She was totally frustrated. The following day Lily was super emotional, crying about everything. The third day she seemed back to normal (they say it can take up to three days for casein to get out of your system). End experiment. No more dairy for sure.<br />
<br />
So, for those of you wondering what in the world she CAN/will eat, here is the list (with hopes of finding more things)<br />
Vegetables (fresh or frozen, nothing from a can) Broccoli, green beans, carrots <br />
Eggs (hard boiled or scrambled)<br />
Rice, potatoes<br />
Chicken (plain, kinda boring)<br />
Bacon (this is a questionable one, I've been trying different ones)<br />
Ham <br />
Chocolate Chip Waffles and Pancakes<br />
Fruit (fresh mostly and organic when possible, very few fruit cups are acceptable, nothing canned of course)<br />
Rice pasta<br />
Organic peanut butter (I use it on bananas)<br />
Cookies (there is a small variety at the natural food store I was able to find...hard to find without soy though)<br />
I found some organic rice krispy type marshmellow bars that she thinks are so-so<br />
I also found a coconut strawberry bar that she really seemed to like, so I'm going to stock up on those.<br />
Orange Juice Pops that I freeze myself<br />
There are some fruit twists and fruit flats that she likes, they have citric acid in them though (on the list for corn) but it's hard to stay away from citric acid so I allow these from time to time.<br />
Organic Lollipops and gummy bears (same deal with the citric acid though, but the girl has to have SOMETHING good!)<br />
<br />
I'm sure there would be more if I was a creative cook (which I'm not sure I could ever be) I am going to try making some butter that she could have. I made a whipped topping from full fat canned coconut milk, organic brown sugar and some raspberries that she seemed to like, but the cake I made to go with it was quickly deemed unacceptable. I had found an angel food cake mix that I thought would be ok. The first ingredient was sugar, which I was concerned about. If an ingredient is just listed as "sugar", you don't know where that sugar comes from, so I've found that too, has been problematic. After eating the cake, at bath time she wouldn't follow direction to even get to the bathroom and get undressed. You could tell she was trying but for some reason she felt she needed to run around. When Anthony got frustrated when she couldn't get undressed she declared, "My brain won't SHUT UP!!" End of cake. It's all trial and error unfortunately.<br />
<br />
After all this, I came across an article about rice and how it's filled with arsenic and that you should stay away from rice syrup. Well isn't that lovely? You just can't win. There's always gonna be something.<br />
<br />
<br />
<div class="blogger-post-footer"><script type="text/javascript" src="http://cdn.widgetserver.com/syndication/subscriber/InsertWidget.js"></script><script>if (WIDGETBOX) WIDGETBOX.renderWidget('22e1e9f2-1ae5-47bf-8a85-e91998504269');</script><noscript>Get the <a href="http://www.widgetbox.com/widget/swidget-10">Swidget 1.0</a> widget and many other <a href="http://www.widgetbox.com/">great free widgets</a> at <a href="http://www.widgetbox.com">Widgetbox</a>!</noscript></div>Chantal, Anthony and Lilyhttp://www.blogger.com/profile/16016676603803839322noreply@blogger.com0tag:blogger.com,1999:blog-1764023316373579728.post-88248046264531381922012-09-08T06:31:00.002-04:002012-09-08T06:31:25.473-04:00September 2012Well, I obviously stopped blogging for awhile, mostly because everything was going great and I didn't have much to report, no news is good news right? So I'm blogging again...you know what that means.<br />
<br />
Here is the update from the past year:<br />
I decided last December to take Lily off of her antifungal to not only see how she would do without it, but to also give her body a break I thought it would need after being on it for so long.<br />
Here is some advice: NEVER change what is WORKING! She started going downhill again. It was pretty gradual. Her focus was off, she couldn't sit and attend well at school. I let it go though, stupidly. I was focusing on other things...<br />
<br />
In Feb. we took a family visit to NY and Lily did so well around her cousins that both Anthony and I felt God tugging on us to move there in the summertime after she finished PreK. Then Anthony got laid off in April...PUSH, we moved to NY June 12th. Just prior to that the kids and I (Anthony went to NY to get started on the job hunt) moved in with my best friend Jenn, who has 2 children as well, the same age as Lily and Meadow, for a few weeks before our move date. Just before we moved in with her, Meadow had gotten horrible cough (so bad she threw up several times a day from coughing so hard), Lily and I got it too, it was BAD...persistent...NO SLEEP...totally awful, would NOT go away.<br />
I DID NOT want us to pass it on so we went to the Dr.'s and they gave us antibiotics...didn't work....how about another antibiotic? NOPE. Steriods? Nothing would touch this nasty cough and I was afraid it would turn into something worse, and we no longer had insurance, or much money at all, especially with the impending moving expenses.<br />
<br />
The result? Nasty cough got passed around anyway and Lily....poor Lily...no antifungal and all this SHIT I gave her (I KNEW better!!!) that just fueled the yeast to the point where she turned into an AUTISTIC MESS, 24/7. Here we were back at square one! NO EYE CONTACT, she wouldn't even Acknowledge me almost at all! It was so hard. Here I was with her, but she really was someplace else. I missed her so badly. I had read a lot about children with autism having a "flight" issue...now that was Lily. Here one second, gone the next. My days were spent trying to find her. I'd have to ask 2 year old Meadow to watch her 5 year old sister!<br />
<br />She was off into her own world, playing in piles of dirt outside for hours on end and obsessed with finding water to make mud and cover herself in it. It was a dark time...I cried and cried. Then I finally called her DAN Dr. and got her back on her antifungal (thanks for the laon mom). There was improvement right away, but I wanted more. I started her on the GFCFSF diet...boy that was hard, but we stuck with it. She had a ton of improvements, but I can't say it was the diet, I really feel like it was the antifungal. After a couple of months I didn't see quite the improvements I was hoping for from the diet.<br />
<br />
THAT brings us to today: when you are the "diet" you eat an awful lot of ingredients that come from corn. What happened a few days ago astonished me. Lily was eating a bowl of popcorn (plain, popped with olive oil on the stove). She ate A LOT. Lily went crazy, running all over the place, getting into things...and when it came time to swallow her pills (not an issue for almost a year, even in the crazier months) she went bolistic. Crying and refusing to take them. I couldn't force her to take them (bribing didn't work either) and she really needed to, so I told her she had to sit in time out until she was ready to take them. She cried and cried screaming, "I don't know what's happening ME!!"<br />
<br />
I lost it. I felt so helpless. What can I do to help my child?! After a ton of tears from everyone, she finally took her pills (and got a big pile of chocolate chips afterwards :)<br />
Then it hits me...it was the popcorn! She had been fine all day up until that point, and the previous night we had some difficulty giving her her meds and she had eaten some corn pasta.<br />
<br />
Lightbulb...someone answered a post a few months back, answering my question about the diet. Her daughter ended up having an issue with corn. GOOGLE...corn, autism...ANSWER: common allergy with people on the spectrum, gluten, casein, soy and CORN.<br />
GOOGLE...ingredients that contain corn...ANSWER...2 pages worth.<br />
What is Lily going to eat NOW?<br />
<br />
Well today was Lily's first day on the very strict diet and she did AWESOME.<br />
<br />
Breakfast: scrambled eggs and ham<br />
Snack: Banana's with peanutbutter and later Frozen bananas that were dipped in peanutbutter and chocolate.<br />
Lunch: Hard boiled eggs<br />
Snack: banana<br />
Snack: apple<br />
Dinner: grean beans and mashed potatoes (some cucumber)<br />
Dessert: an awesome but expensive allergy free piece of spice cake.<br />
<br />
Todays events:<br />
<ul>
<li>playing with her sister (this one is big)</li>
<li>not screaming when her sister took the ipad, her declaration, "Hey, I want to see that too!"</li>
<li>She filled Meadow in on what she had missed from "Elmo's World"..."Meadow, at first he was a fish!" (Elmo had been pretending to be various pets)</li>
<li>Meadow was playing Dr. and Daddy was her patient. Lily sat next to me in the "waiting area" (I had no idea she was waiting for a turn!) and finally said, "Can I be the patient now?" and went right up and sat next to Daddy and actively took part in the play. It's such a huge thing for her to have observed everything quietly first and then jump in.</li>
<li>Much better eye contact</li>
<li>When Meadow asked for her attention while Lily was watching TV (a damn near impossibility for anyone) Lily was actually able to look at her and declared, "I'm FOCUSING!" She was just as shocked as I was, lol.</li>
</ul>
So here we are, on the road to recovery, yet again. I know the Lord allowed all this to happen so that she would get bad enough for me to start her on the diet. I never thought she needed it before, she was always doing so well, but sometimes we are blinded too. She did well in day to day settings, but when you put her certain social situations, it was always clear she needed more help. I know things won't be perfect, but I am certain that she will do awesome.<br />
<br />
Lily starts Kindergarten in a couple of days and is so excited. In NY, in the district we live in, kindergarten is only 2.5 hours! This too is a blessing, now I will be able to moniter all her food intake to make sure she's the best she can be. After 3 years of full time PreK, this should be a breeze for her and hopefully her anxiety will be less :)<br />
<br />
Meadow, has been doing awesome. She talks NONSTOP now, and is a pretty bossy 2 year old. She's wonderful and is such a blessing in our lives. She loves to tell knock knock jokes like:<br />
Knock Knock<br />
Who's there?<br />
Jamaican<br />
Jamaican who?<br />
Jamaican me Crazy!<br />
<br />
Or<br />
Knock Knock<br />
Who's there?<br />
Orange<br />
Orange who?<br />
Orange you glad I didn't say Nana? (if you know this one, you know she skips a lot on this one, lol)<br />
<br />
She loves to sing and dance and likes to make everyone laugh. She still doesn't sleep well at night though. She still can have problems with constipation, I have to give her extra fiber. She wakes up crying around 6-8 times at night, I hope she grows out of that soon!<br />
<br />
I'm going to try to post daily, at least what Lily is eating so I can keep track. :)<div class="blogger-post-footer"><script type="text/javascript" src="http://cdn.widgetserver.com/syndication/subscriber/InsertWidget.js"></script><script>if (WIDGETBOX) WIDGETBOX.renderWidget('22e1e9f2-1ae5-47bf-8a85-e91998504269');</script><noscript>Get the <a href="http://www.widgetbox.com/widget/swidget-10">Swidget 1.0</a> widget and many other <a href="http://www.widgetbox.com/">great free widgets</a> at <a href="http://www.widgetbox.com">Widgetbox</a>!</noscript></div>Chantal, Anthony and Lilyhttp://www.blogger.com/profile/16016676603803839322noreply@blogger.com0tag:blogger.com,1999:blog-1764023316373579728.post-31212588947774493702011-11-23T03:00:00.000-05:002011-11-23T03:00:48.873-05:00Lily 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 <i>fully </i>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.<br />
<br />
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.<br />
<br />
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 <i>everyone </i>you know, knows SOMEONE affected by autism in some way.<div class="blogger-post-footer"><script type="text/javascript" src="http://cdn.widgetserver.com/syndication/subscriber/InsertWidget.js"></script><script>if (WIDGETBOX) WIDGETBOX.renderWidget('22e1e9f2-1ae5-47bf-8a85-e91998504269');</script><noscript>Get the <a href="http://www.widgetbox.com/widget/swidget-10">Swidget 1.0</a> widget and many other <a href="http://www.widgetbox.com/">great free widgets</a> at <a href="http://www.widgetbox.com">Widgetbox</a>!</noscript></div>Chantal, Anthony and Lilyhttp://www.blogger.com/profile/16016676603803839322noreply@blogger.com0tag:blogger.com,1999:blog-1764023316373579728.post-57315087834629574052011-11-23T01:40:00.000-05:002011-11-23T01:40:36.746-05:00Boy, she's come a long way! Here's a video from when Lily was 2.<div></div><br />
<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dzgFVrNakLal2a4bTLJ2SCjkpIfkNuZ6mHgD7NNCJsVRjZirP-pybnXTTNxqKALcIfsaUyyH8e_iApBZrRI5w' class='b-hbp-video b-uploaded' frameborder='0'></iframe><br />
No one will ever be able to tell me Lily must have been "misdiagnosed". I'll post a recent video soon.<div class="blogger-post-footer"><script type="text/javascript" src="http://cdn.widgetserver.com/syndication/subscriber/InsertWidget.js"></script><script>if (WIDGETBOX) WIDGETBOX.renderWidget('22e1e9f2-1ae5-47bf-8a85-e91998504269');</script><noscript>Get the <a href="http://www.widgetbox.com/widget/swidget-10">Swidget 1.0</a> widget and many other <a href="http://www.widgetbox.com/">great free widgets</a> at <a href="http://www.widgetbox.com">Widgetbox</a>!</noscript></div>Chantal, Anthony and Lilyhttp://www.blogger.com/profile/16016676603803839322noreply@blogger.com0tag:blogger.com,1999:blog-1764023316373579728.post-69801618878485014382011-11-23T01:30:00.001-05:002011-11-23T01:32:49.633-05:00May 2011<div>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.</div><br />
<div>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. </div><div class="blogger-post-footer"><script type="text/javascript" src="http://cdn.widgetserver.com/syndication/subscriber/InsertWidget.js"></script><script>if (WIDGETBOX) WIDGETBOX.renderWidget('22e1e9f2-1ae5-47bf-8a85-e91998504269');</script><noscript>Get the <a href="http://www.widgetbox.com/widget/swidget-10">Swidget 1.0</a> widget and many other <a href="http://www.widgetbox.com/">great free widgets</a> at <a href="http://www.widgetbox.com">Widgetbox</a>!</noscript></div>Chantal, Anthony and Lilyhttp://www.blogger.com/profile/16016676603803839322noreply@blogger.com0tag:blogger.com,1999:blog-1764023316373579728.post-12787150765463825062011-01-08T14:47:00.002-05:002011-01-08T15:26:54.959-05:00january 8, 2011Where 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.<br /><br />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.<br /><br />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).<br /><br />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.<br /><br />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.<div class="blogger-post-footer"><script type="text/javascript" src="http://cdn.widgetserver.com/syndication/subscriber/InsertWidget.js"></script><script>if (WIDGETBOX) WIDGETBOX.renderWidget('22e1e9f2-1ae5-47bf-8a85-e91998504269');</script><noscript>Get the <a href="http://www.widgetbox.com/widget/swidget-10">Swidget 1.0</a> widget and many other <a href="http://www.widgetbox.com/">great free widgets</a> at <a href="http://www.widgetbox.com">Widgetbox</a>!</noscript></div>Chantal, Anthony and Lilyhttp://www.blogger.com/profile/16016676603803839322noreply@blogger.com0tag:blogger.com,1999:blog-1764023316373579728.post-29289515171092238462010-10-16T01:14:00.002-04:002010-10-16T01:43:15.982-04:00Well, 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.<br /><br />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.<br /><br />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!!<br /><br />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."<br /><br />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!"<br />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.<div class="blogger-post-footer"><script type="text/javascript" src="http://cdn.widgetserver.com/syndication/subscriber/InsertWidget.js"></script><script>if (WIDGETBOX) WIDGETBOX.renderWidget('22e1e9f2-1ae5-47bf-8a85-e91998504269');</script><noscript>Get the <a href="http://www.widgetbox.com/widget/swidget-10">Swidget 1.0</a> widget and many other <a href="http://www.widgetbox.com/">great free widgets</a> at <a href="http://www.widgetbox.com">Widgetbox</a>!</noscript></div>Chantal, Anthony and Lilyhttp://www.blogger.com/profile/16016676603803839322noreply@blogger.com0tag:blogger.com,1999:blog-1764023316373579728.post-33116313899406033402010-03-01T07:07:00.003-05:002010-03-01T08:11:42.189-05:003/1/10Children 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.<br />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.<br /><br />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 <em>everyday</em>. 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.<br /><br />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?<br /><br />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!<br />Here is just one example of something she said:<br /><br />"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!"<br /><br />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.<br />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!<br /><br />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.<br /><br />Here are a few other things she said last night:<br /><br />Where is the ball? I can’t see it.<br />I’m hungry. Want a snack. Want some bread (pronounced “Bled“)<br />Turn the music off Daddy.<br />This ball is different! (comparing two balls)<br /><br />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.<br />I wonder how she'll respond after her sister is born? I'll find out soon!<div class="blogger-post-footer"><script type="text/javascript" src="http://cdn.widgetserver.com/syndication/subscriber/InsertWidget.js"></script><script>if (WIDGETBOX) WIDGETBOX.renderWidget('22e1e9f2-1ae5-47bf-8a85-e91998504269');</script><noscript>Get the <a href="http://www.widgetbox.com/widget/swidget-10">Swidget 1.0</a> widget and many other <a href="http://www.widgetbox.com/">great free widgets</a> at <a href="http://www.widgetbox.com">Widgetbox</a>!</noscript></div>Chantal, Anthony and Lilyhttp://www.blogger.com/profile/16016676603803839322noreply@blogger.com0tag:blogger.com,1999:blog-1764023316373579728.post-20234082010302188712010-02-07T21:54:00.002-05:002010-02-07T23:02:20.359-05:002-7-10I 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.<br /><br />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).<br /><br />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.<br />The good news is that she now qualifies for speech services and has started to get speech therapy at school twice a week.<br /><br />Here are some of the cool things that have been occuring lately:<br /><ul><li>Lily said today that she was hungry! (oh, the small things that mean so much...FINALLY)</li><li>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!</li><li>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!" </li><li>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.</li><li>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).</li><li>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)</li><li>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!)</li></ul><p>More to come later!</p><div class="blogger-post-footer"><script type="text/javascript" src="http://cdn.widgetserver.com/syndication/subscriber/InsertWidget.js"></script><script>if (WIDGETBOX) WIDGETBOX.renderWidget('22e1e9f2-1ae5-47bf-8a85-e91998504269');</script><noscript>Get the <a href="http://www.widgetbox.com/widget/swidget-10">Swidget 1.0</a> widget and many other <a href="http://www.widgetbox.com/">great free widgets</a> at <a href="http://www.widgetbox.com">Widgetbox</a>!</noscript></div>Chantal, Anthony and Lilyhttp://www.blogger.com/profile/16016676603803839322noreply@blogger.com0tag:blogger.com,1999:blog-1764023316373579728.post-827000650244280702009-12-21T17:10:00.002-05:002009-12-21T17:13:39.793-05:00Pic<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjaCZGJIr_Vh1EUcrem9SWMl-G0t9W-4XSeif877hri74hZuGRV50JGgj7IgQ_6GVM1-XUBvCwXNIq3w1fumnK9Z-4VKRcWbqMIg3_IVLmzW70G96aWLmrkrpBtx8M9PEwhRqR-tETiPvJ6/s1600-h/merry+christmas.jpg"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 229px; DISPLAY: block; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5417815641436029442" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjaCZGJIr_Vh1EUcrem9SWMl-G0t9W-4XSeif877hri74hZuGRV50JGgj7IgQ_6GVM1-XUBvCwXNIq3w1fumnK9Z-4VKRcWbqMIg3_IVLmzW70G96aWLmrkrpBtx8M9PEwhRqR-tETiPvJ6/s320/merry+christmas.jpg" /></a> <div>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! </div><br /><div></div><br /><div><br /></div><br /><div></div><div class="blogger-post-footer"><script type="text/javascript" src="http://cdn.widgetserver.com/syndication/subscriber/InsertWidget.js"></script><script>if (WIDGETBOX) WIDGETBOX.renderWidget('22e1e9f2-1ae5-47bf-8a85-e91998504269');</script><noscript>Get the <a href="http://www.widgetbox.com/widget/swidget-10">Swidget 1.0</a> widget and many other <a href="http://www.widgetbox.com/">great free widgets</a> at <a href="http://www.widgetbox.com">Widgetbox</a>!</noscript></div>Chantal, Anthony and Lilyhttp://www.blogger.com/profile/16016676603803839322noreply@blogger.com1tag:blogger.com,1999:blog-1764023316373579728.post-63974990380440610942009-12-21T16:04:00.002-05:002009-12-21T17:03:59.193-05:0012/21/09Well, 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 <span id="SPELLING_ERROR_0" class="blsp-spelling-corrected">definite</span> 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.<br /><br />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 <span id="SPELLING_ERROR_1" class="blsp-spelling-corrected">excel</span> 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 <span id="SPELLING_ERROR_2" class="blsp-spelling-corrected">eye contact</span> 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 5<span id="SPELLING_ERROR_3" class="blsp-spelling-error">th</span> 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.<br /><br />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 <span id="SPELLING_ERROR_4" class="blsp-spelling-corrected">snow angels</span>. <span id="SPELLING_ERROR_5" class="blsp-spelling-corrected">Every time</span> 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.<br /><br />After we finally flew home she had a rough adjustment period. She <span id="SPELLING_ERROR_6" class="blsp-spelling-error">tantrumed</span> 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.<br /><br />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.<br /><br /><br />Lily's preschool class had a Holiday party and the kids sang songs and Santa came for a visit. It was <span id="SPELLING_ERROR_7" class="blsp-spelling-corrected">truly</span> 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.<br /><br />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.<br /><br />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 <span id="SPELLING_ERROR_8" class="blsp-spelling-corrected">piggy bank</span>. She started calling him "Dasher" and tried to ride him around the <span id="SPELLING_ERROR_9" class="blsp-spelling-corrected">living room</span>, <span id="SPELLING_ERROR_10" class="blsp-spelling-error">lol</span>.<br /><br />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)!<div class="blogger-post-footer"><script type="text/javascript" src="http://cdn.widgetserver.com/syndication/subscriber/InsertWidget.js"></script><script>if (WIDGETBOX) WIDGETBOX.renderWidget('22e1e9f2-1ae5-47bf-8a85-e91998504269');</script><noscript>Get the <a href="http://www.widgetbox.com/widget/swidget-10">Swidget 1.0</a> widget and many other <a href="http://www.widgetbox.com/">great free widgets</a> at <a href="http://www.widgetbox.com">Widgetbox</a>!</noscript></div>Chantal, Anthony and Lilyhttp://www.blogger.com/profile/16016676603803839322noreply@blogger.com0tag:blogger.com,1999:blog-1764023316373579728.post-49624307894117284792009-11-27T15:02:00.002-05:002009-11-27T15:18:54.575-05:00We celebrated a wonderful thanksgiving with friends and Lily is no longer sick and will be going back to school on monday, yay!<br />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.<br />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...<div class="blogger-post-footer"><script type="text/javascript" src="http://cdn.widgetserver.com/syndication/subscriber/InsertWidget.js"></script><script>if (WIDGETBOX) WIDGETBOX.renderWidget('22e1e9f2-1ae5-47bf-8a85-e91998504269');</script><noscript>Get the <a href="http://www.widgetbox.com/widget/swidget-10">Swidget 1.0</a> widget and many other <a href="http://www.widgetbox.com/">great free widgets</a> at <a href="http://www.widgetbox.com">Widgetbox</a>!</noscript></div>Chantal, Anthony and Lilyhttp://www.blogger.com/profile/16016676603803839322noreply@blogger.com0tag:blogger.com,1999:blog-1764023316373579728.post-56591583350209711072009-11-23T15:37:00.003-05:002009-11-23T16:48:26.005-05:0011/23/09Lily, as usual, has been excelling. She has been doing a lot more "typical" behaviors and is continuing to blossom. Now she really tries to engage people and even likes to do things to make you laugh. She routinely looks at strangers and says "hi". She is <span id="SPELLING_ERROR_0" class="blsp-spelling-corrected">definitely</span> coming out of her own world to meet everyone, not just people she cares for.<br /><br />Her school had an event for Veteran's Day that I attended with her. As she was sitting on my lap, she would routinely look up at me and say hi with a big smile on her face. At one point I wasn't looking back at her and she cupped my chin in her hand, turned my face to look at her, and said, "You like this?". Oh what a proud moment! Not only was she "experience sharing" with me the whole time, but she actually wanted to know how I was feeling. This is a HUGE deal for her! What a milestone! Since then there have been other times when she has asked me if I am happy ("mommy happy?") or commented to me, "mommy is happy" when she sees me smile. Lily has also been adding my name to her requests if she gets ignored, as if it <span id="SPELLING_ERROR_1" class="blsp-spelling-corrected">reiterate</span> that she is indeed, speaking to ME. She also has been saying "<span id="SPELLING_ERROR_2" class="blsp-spelling-error">ok</span>" in response to questions or requests on my part, instead of repeating what I say to her (which she's still doing, just a little bit less lately).<br /><br />Today we went to the park and she seemed to really enjoy being by the water and looking at the ducks and turtle. I love it when she makes her own comments, like "brother, sister!" when she was pointing at the ducks, or "Squirt! Dude...Totally" when she was looking at the turtle (you'd have to have seen <span id="SPELLING_ERROR_3" class="blsp-spelling-error">Nemo</span> recently to get that comment).<br /><br />The other day I told her that I love her and she looked right into my eyes and said, "I love you too Mommy!" It's just one of those things that is probably taken for granted by so many parents. I started BALLING my eyes out when she said that to me. It has been my greatest gift. Another thing that she has been routinely doing is saying "good night mommy" before she goes to sleep at night and for nap time (without my saying anything first). It's just so precious to me.<br />On a funnier note, she has been known to talk as she is falling asleep. Her latest is yelling, "chickens! chickens! chickens!" while giggling. Hard to believe she wasn't awake. Makes me really wonder what she is dreaming. Another time she was asleep and seemingly woke for just a moment, looked up and point and yelled "fire truck!" and then passed back out again, <span id="SPELLING_ERROR_4" class="blsp-spelling-error">lol</span>.<br /><br />Lily has been continuing to follow directions better and we were even able to play a game as a family! We played Craniums Hullabaloo and Lily seemed to really enjoy it. Lily is able to communicate her wants much better and has been requesting things routinely that she hasn't seen for a while (a toy or a movie). This is great because she is growing out of her own little routines and expanding on the things she enjoys and is not fixating so much on any one thing.<br />She also has been calling our attention to things and saying "look at this" or "watch this".<br /><br />Before Lily started school she was doing pretty well with the potty training, and for the first couple of weeks at school (not at home though) she routinely went. She has boycotted the potty all together now, which for now is <span id="SPELLING_ERROR_5" class="blsp-spelling-error">ok</span>, <span id="SPELLING_ERROR_6" class="blsp-spelling-corrected">particularly</span> since she is on day 12 of diarrhea! I'm not sure what is wrong. I tried the BRAT diet (no success) and a special <span id="SPELLING_ERROR_7" class="blsp-spelling-error">probiotic</span> her Dr. prescribed. I even had her stool tested and everything came back negative. My poor girl had the worst diaper rash, though thankfully with a prescription, that has cleared up. She's been waking in the night with full diapers and then doesn't want to go back to bed, so that's been hard too. Luckily she still seems to stay hydrated, has been eating well and has kept a pretty good attitude through it all.<br />One good thing that happened with it was when she first started with the problem, she was sitting on the couch and exclaimed "go pee, go pee!" so we rushed to the bathroom and she went, though what came out was not what she had expected. The good news is she recognized that she had to go and told me!! <span id="SPELLING_ERROR_8" class="blsp-spelling-error">Yay</span>!!<br /><br />Lily seems to be understanding (to some small extent) that her little sister Meadow is in mommy's belly. She's even been giving her hugs and kisses! I'm wondering how things will be when she sees her for the first time. It will really make life interesting when <span id="SPELLING_ERROR_9" class="blsp-spelling-error">there'll</span> be the two of them to contend with. I'm really starting to look forward to it more than be scared by it, which has me feeling much better!<div class="blogger-post-footer"><script type="text/javascript" src="http://cdn.widgetserver.com/syndication/subscriber/InsertWidget.js"></script><script>if (WIDGETBOX) WIDGETBOX.renderWidget('22e1e9f2-1ae5-47bf-8a85-e91998504269');</script><noscript>Get the <a href="http://www.widgetbox.com/widget/swidget-10">Swidget 1.0</a> widget and many other <a href="http://www.widgetbox.com/">great free widgets</a> at <a href="http://www.widgetbox.com">Widgetbox</a>!</noscript></div>Chantal, Anthony and Lilyhttp://www.blogger.com/profile/16016676603803839322noreply@blogger.com0tag:blogger.com,1999:blog-1764023316373579728.post-49101950965180880792009-10-30T01:46:00.002-04:002009-10-30T02:01:26.431-04:0010-30-09Lily has adjusted quickly and is doing very well at school! The school is totally wonderful and I feel so blessed that she is able to go there. It really is the perfect place for her and has yielded some wonderful results! She is listening better and is able to process information faster. Her eye contact has improved and she is following directions much better. Her speech is better (she is able to have much longer word utterances). She still has difficulty communicating with actual sentences, but that will come in time. Some of that is just about getting out of the habit of communicating with just a few words and some of that is about us having to enforce her use of sentences more often and waiting for her to ask.<br /><br />Her teachers love her and she loves them too! They sing songs, do crafts and have a lot of field trips and special things that they do and I am happy that I can be a part of all of it! Last week we went to the pumpkin patch and a picnic in the park. Tomorrow (well, today actually) is their fall festival where all the kids dress up in costume and have little games and activities planned where the parents can come too. Lily likes going to school and I am so happy! It has given me some time to catch up on some appts. and things and has been nice to be able to schedule dr.'s appts. in the am and not worry about having to bring Lily or ask for a sitter.<br /><br />Lily seems to be much happier and I am enjoying her more than ever! Anthony told me that last weekend she was hiding and yelling "Help!" over and over again in desperation. He ran to her as fast as he could in a panic and when he found her she smiled at him and yelled "SURPRISE!"<br />Gotta love it.<div class="blogger-post-footer"><script type="text/javascript" src="http://cdn.widgetserver.com/syndication/subscriber/InsertWidget.js"></script><script>if (WIDGETBOX) WIDGETBOX.renderWidget('22e1e9f2-1ae5-47bf-8a85-e91998504269');</script><noscript>Get the <a href="http://www.widgetbox.com/widget/swidget-10">Swidget 1.0</a> widget and many other <a href="http://www.widgetbox.com/">great free widgets</a> at <a href="http://www.widgetbox.com">Widgetbox</a>!</noscript></div>Chantal, Anthony and Lilyhttp://www.blogger.com/profile/16016676603803839322noreply@blogger.com0tag:blogger.com,1999:blog-1764023316373579728.post-88045973525967929592009-10-17T17:42:00.002-04:002009-10-17T18:46:22.825-04:0010/17/09My little girl turned THREE this week! I can hardly believe it! We had a great time celebrating with family at Chuck E. Cheese the night before, a wonderful day with friends the day of and a happy little girl who LOVED opening all of her presents!<br /><br />I went to an <span id="SPELLING_ERROR_0" class="blsp-spelling-corrected">eligibility</span> meeting for Lily that evaluated her to see if she qualified for state services. We went over all of her scores from all the testing that she had had done. She did not qualify for special education (wouldn't have put her in that anyway), she did not qualify for OT services (no surprise there), she did not qualify for speech services (shocking to me) and because of her <span id="SPELLING_ERROR_1" class="blsp-spelling-corrected">cognitive</span> scores they were on the fence as to whether or not they would be giving her any kind of services at all! The speech therapist really went to bat for Lily (I initially did not like her at all in previous meetings, but sometimes a hard ass comes in handy! Actually she was quite nice to me during the meeting and it was great to hear everything she had to say, I have to say I agreed with her on most everything). In the end it was Lily's diagnosis of autism that got her services. Without it, she would not have qualified. This is very sad to me. She's come VERY far and I am so proud of all that she has accomplished, but she still has so far to go. What is wrong with the state? She so clearly needs services. How many slip through the cracks? What if I had not gotten Lily diagnosed?<br />We put together her <span id="SPELLING_ERROR_2" class="blsp-spelling-error">IEP</span> (individualized education plan) and I was very happy with it. We set up all the goals that we would like for Lily to achieve as well as giving input as to how Lily learns best to give her teachers something to work with. They told me she qualified for an inclusion class that is very close to home, <span id="SPELLING_ERROR_3" class="blsp-spelling-error">yay</span>!<br /><br />Lily will be starting preschool on <span id="SPELLING_ERROR_4" class="blsp-spelling-error">monday</span>! We checked out the school and it seems perfect. I heard wonderful things about their preschool program. <br />Lily will be the only child in the class that is on the spectrum (there is one other but they are part time), there are 5 typical kids and 5 developmentally delayed kids, with 3 teachers. Lily loved it there and threw a tantrum when it was time to leave :) I spoke with her teacher at length and she was very surprised Lily didn't qualify for speech, especially since her <span id="SPELLING_ERROR_5" class="blsp-spelling-error">IEP</span> has 2 speech related goals. She told me that she would basically be pushing Lily through the back door for her to get some extra help with the speech therapist there. I will either have her go 3 or 4 days a week, depending on how she does. I'd love her to just go M-W and have off <span id="SPELLING_ERROR_6" class="blsp-spelling-error">th</span>/<span id="SPELLING_ERROR_7" class="blsp-spelling-error">fri</span>, but I'm thinking this may be really good for her, so I'll just see how it goes.<br /><br />One other great thing that Lily has been doing: today she watched herself in a video and said(a few times)"Hey, that's me!", which is fantastic that she did not refer to herself as "Lily".<div class="blogger-post-footer"><script type="text/javascript" src="http://cdn.widgetserver.com/syndication/subscriber/InsertWidget.js"></script><script>if (WIDGETBOX) WIDGETBOX.renderWidget('22e1e9f2-1ae5-47bf-8a85-e91998504269');</script><noscript>Get the <a href="http://www.widgetbox.com/widget/swidget-10">Swidget 1.0</a> widget and many other <a href="http://www.widgetbox.com/">great free widgets</a> at <a href="http://www.widgetbox.com">Widgetbox</a>!</noscript></div>Chantal, Anthony and Lilyhttp://www.blogger.com/profile/16016676603803839322noreply@blogger.com0tag:blogger.com,1999:blog-1764023316373579728.post-41703777201907139012009-10-07T22:26:00.003-04:002009-10-07T22:37:54.512-04:0010/7/09Well, we got our second opinion from another neurologist regarding her medication. The message I got was, she's on a low dose and why change something that is working? He seemed surprised Lily was diagnosed moderate autism and said she's looking good, he thought she would have been diagnosed PDD (a lesser diagnosis on the spectrum). I got the impression he sees a lot of kids that are severely autistic since he seemed shocked that she could follow a command (I guess even I take certain things for granted now, just another reminder of just how far she's come).<br />Lily is starting to have quite an imagination. She pointed in the air and said "Look! Bees!" I said, "wow, look at that, their are so many!" she then said, "Bee's fighting!" smiled, and ran away.<br />Lily turns 3 next week, I can hardly believe it! She has been doing so well. Preschool may be in her future soon, we'll see what they say at our meeting tomorrow.<div class="blogger-post-footer"><script type="text/javascript" src="http://cdn.widgetserver.com/syndication/subscriber/InsertWidget.js"></script><script>if (WIDGETBOX) WIDGETBOX.renderWidget('22e1e9f2-1ae5-47bf-8a85-e91998504269');</script><noscript>Get the <a href="http://www.widgetbox.com/widget/swidget-10">Swidget 1.0</a> widget and many other <a href="http://www.widgetbox.com/">great free widgets</a> at <a href="http://www.widgetbox.com">Widgetbox</a>!</noscript></div>Chantal, Anthony and Lilyhttp://www.blogger.com/profile/16016676603803839322noreply@blogger.com0tag:blogger.com,1999:blog-1764023316373579728.post-43776614343589892722009-10-05T07:53:00.004-04:002009-10-05T08:38:57.720-04:0010/5/09Lily has been excelling in so many ways! I have taken her off her <span id="SPELLING_ERROR_0" class="blsp-spelling-error">antifungal</span> for a couple of reasons (Dr. did not want her to continue her current one, and an old one we tried that we wanted to try again kept her from sleeping even with her sleeping medication). I want to try another suggestion for her yeast build up, but right now she is doing so well I don't see a need to change anything. The theory is once off the <span id="SPELLING_ERROR_1" class="blsp-spelling-error">antifungal</span> she should regress due to yeast build up. I'm not sure how long it takes for that to occur, I think it's different for every kid but I've seen no signs of regression and it has been a week so far.<br />Recently, she picked up Anthony's hat and said "that's Daddy's hat", she put it on and in a deep voice said, "Hello Baby Girl...Hello Mommy","Can I have a kiss?"<br />I had tears streaming down my face it was just too funny! I've always told Anthony to stop bothering her for kisses, <span id="SPELLING_ERROR_2" class="blsp-spelling-error">lol</span>.<br />She's also been telling me about things she's been doing. She doesn't use a lot of words yet, but she's initiating it on her own! She has also been wanting to call me on the phone when I'm at work and she is getting very good at communicating. We use to have to prompt her for what to say, but now she is doing a lot of that on her own. A couple of days ago she got on the phone and told me, "Park...slide" to tell me she went to the park and went down the slide. And then told me that she loved me :)<br />Yesterday Anthony had trouble putting her down for a nap and he was getting angry with her because he would tell her to lay down and go to sleep and she would put on her "<span id="SPELLING_ERROR_3" class="blsp-spelling-error">anthony</span> voice" and parrot everything he was saying. She ended up crying for a long time, stopped and then went over to Anthony and said "I'm <span id="SPELLING_ERROR_4" class="blsp-spelling-error">ok</span>" "I love you" and gave him a big hug.<br />We took Lily to the park the other night and she kept trying to point stuff out to us, saying "look!" (she was really loving nature) "trees up sky" (the trees were VERY tall). We went by the water and she saw the <span id="SPELLING_ERROR_5" class="blsp-spelling-error">lilly</span> pads and said "Frogs go?" that was her way of asking me "where did the frogs go?" since she assumed they should be with the <span id="SPELLING_ERROR_6" class="blsp-spelling-error">lilly</span> pads. Then she saw a duck and started yelling, "Hi Duck!!" several times and giving him a great big wave.<br />She has had such an easier time to communicate and has really been initiating conversation more. She has also been processing information a little better.<br />She's also been singing the songs she loves so much with different <span id="SPELLING_ERROR_7" class="blsp-spelling-corrected">rhythms</span> and tones. She thinks it's fun that she can do things "her way" if she wants to. Just now instead of singing the <span id="SPELLING_ERROR_8" class="blsp-spelling-error">itsy</span> <span id="SPELLING_ERROR_9" class="blsp-spelling-error">bitsy</span> spider, she said it out loud without singing, as if she was telling a story.<br /><br />Several months ago Lily asked me for a baby sister, by coming to me out of the blue and saying "Baby Sister?" it was actually one of her very first questions (or maybe she was telling me what was to come). We weren't trying to conceive but weren't exactly preventing, just trying to time things right so that it wouldn't happen. Well, we weren't very successful (for the long haul, it did work for a while!) and surprisingly conceived a month later. Well, I have been feeling as though I have been carrying a boy. When trying to get Lily down for a nap she would accidentally kick me in the <span id="SPELLING_ERROR_10" class="blsp-spelling-corrected">stomach</span> and I would tell her "don't kick your brother!" and she would be <span id="SPELLING_ERROR_11" class="blsp-spelling-corrected">adamant</span> and say "kick S-I-S-T-E-R!" and she probably corrected me at least 3 or 4 times. Well, we just found out that we are indeed having a little girl. My girl has some serious intuition, or she is getting some inside information from someone, <span id="SPELLING_ERROR_12" class="blsp-spelling-error">lol</span>. She'll have her sister around mid March and yet another journey will begin!<div class="blogger-post-footer"><script type="text/javascript" src="http://cdn.widgetserver.com/syndication/subscriber/InsertWidget.js"></script><script>if (WIDGETBOX) WIDGETBOX.renderWidget('22e1e9f2-1ae5-47bf-8a85-e91998504269');</script><noscript>Get the <a href="http://www.widgetbox.com/widget/swidget-10">Swidget 1.0</a> widget and many other <a href="http://www.widgetbox.com/">great free widgets</a> at <a href="http://www.widgetbox.com">Widgetbox</a>!</noscript></div>Chantal, Anthony and Lilyhttp://www.blogger.com/profile/16016676603803839322noreply@blogger.com0tag:blogger.com,1999:blog-1764023316373579728.post-14808775041711731232009-09-25T07:08:00.005-04:002009-09-28T22:56:57.881-04:009-28-09It's been awhile since the last update and a lot has been happening. We went to NY to visit family and Lily surprised me and did pretty well. She really thrives being around family, though it was hard on her at the same time. It was very tiring for her to not really have much down time, trying to process new input all the time. She took a little while to adjust and when we got home she really regressed quite a bit(<span class="blsp-spelling-error" id="SPELLING_ERROR_0">nonresponsive</span>, in her own world) and it depressed me a lot. Hard to blog the negative. I think she was on input overload and that was her way of dealing with it. She really made great strides while we were there though, so I'm going to try to plan another trip soon.<br /><br />Lily's grandparents came for a visit and she just blossomed with them around. I'm not sure why she is so attached to family but she had her best week yet while they were here. Great eye contact and responsiveness, it was wonderful to see. Of course now she's back to being where she was with those things, but continues to do some small but wonderful things. Since the last post here are a few things:<br /><br /><ul><li>She was in time out and called out for me, so I told her I couldn't talk to her while she was in time out and she said, "But <span class="blsp-spelling-error" id="SPELLING_ERROR_1">WHYYYY</span>?" Which has been her third why question that I've heard, so I'm excited about that.</li><li>She was with Anthony at the pool and said "Baby started crying" after just that! She really has her "<span class="blsp-spelling-error" id="SPELLING_ERROR_2">ing</span>" and "ed" words down, which is great. At this point any sentencing coming out of her mouth is great to hear.</li><li>She's been more actively playing chase and her singing has really increased, as well as her speech and articulation.</li><li>Lily always had trouble with thinking about things in reverse. She could always fill in the blank with things like "the pig says <span style="font-weight: bold;">oink</span>" but when asked the reverse "oink says the <span style="font-weight: bold;">?</span>" she would say "oink", but can now say pig (as well as all the other animals)</li><li>She just recently started asking "mommy, what's this?"<br /></li></ul>Lily had her second <span class="blsp-spelling-error" id="SPELLING_ERROR_3">eval</span> for preschool and I just recently got the results back. They redid the tests she got originally last year for autism. She's apparently doing much better because in 2 of the 5 categories she showed no signs of autism (her creative play is right on track and she showed no physical <span class="blsp-spelling-corrected" id="SPELLING_ERROR_4">stereotyped</span> behaviors for autism). She scored in the normal range for her cognitive skills. She also scored in the normal range for speech, which surprises me, but I'm happy about it. Though she scored in the normal range for speech she showed a sever pragmatic language disorder.<br /><br />Her speech therapist believes that she she has an auditory processing disorder, which I've known she has, but she believes that's her main problem and causes the rest of the problems that she has like her <span class="blsp-spelling-error" id="SPELLING_ERROR_5">echolalia</span> (repeating you word for word instead of answering your question), her lack of social skills and the hold up on her speech (she can talk but not have <span class="blsp-spelling-corrected" id="SPELLING_ERROR_6">any kind</span> of back and forth dialog with you, though she has her own dialog with her toys when she plays). She's like a deer in headlights when you ask her questions or say anything to her, she has no idea what you are saying at that moment so she'll repeat what you say back to you because she's trying to process what your saying (kind of like if you repeated a math question back to yourself because you are trying to figure it out), she knows she's suppose to respond but doesn't know how and also because she's been taught to "parrot" everything we say, it's how we got her talking in the first place and got her over the speech apraxia but she's also doing it out of habit. When asked simple yes or no questions she'll echo what you say instead of responding. "Do you like that?" is one I'll hear her echo a lot, but she won't echo questions she fully understands, like "what color is that?" Or "how many are there?" (she'll count them out loud for you) or "which letter is that?"<br />Those are concrete concepts for her that she gets. She doesn't understand questions like "what's wrong, or what's the matter?" or any number of different things. A lot of times she'll actually go through the goodbye process and not realize that that person is leaving until they are out the door or close to the door and then realizes it. It just doesn't process. Kind of like having a short conversation with someone while you are into a tv show, only to remember what was really said when you reach the commercial and think back on it. A lot of the time she is on autopilot.<br /><br />Here's what I pulled off the net:<br />An auditory processing disorder (<span class="blsp-spelling-error" id="SPELLING_ERROR_7">APD</span> or <span class="blsp-spelling-error" id="SPELLING_ERROR_8">CAPD</span>) is a disorder in “how” auditory information is processed in the brain. It can be thought of as a “listening disorder” not a hearing disorder. The problem is in the brain – not in the ear.<br /><br /><strong>Symptoms</strong><br />The symptoms of <span class="blsp-spelling-error" id="SPELLING_ERROR_9">APD</span> are extremely varied, however, some of the most common are: <ul><li>Children who say “huh” or “what” frequently</li><li> Children who don’t look or respond when their name is called</li><li> Children who give slow or delayed responses to people talking to them</li><li> Children who mispronounce typical word sounds</li><li> Children who have difficulty following oral directions </li><li> Children who misunderstand what is asked or said to them …these children usually answer off topic or don’t answer at all.</li><li> Children who are easily distracted or become confused especially when there is background noise</li><li> Children who avoid loud noises (cover their ears) even around common household noises</li><li> Children who show delays in acquiring language</li><li> Children who evidence difficulty learning phonics, reading and spelling</li></ul> Symptoms of <span class="blsp-spelling-error" id="SPELLING_ERROR_10">APD</span> can actually be seen in infancy, however, they usually become noticed at about age 18-24 months.<div class="blogger-post-footer"><script type="text/javascript" src="http://cdn.widgetserver.com/syndication/subscriber/InsertWidget.js"></script><script>if (WIDGETBOX) WIDGETBOX.renderWidget('22e1e9f2-1ae5-47bf-8a85-e91998504269');</script><noscript>Get the <a href="http://www.widgetbox.com/widget/swidget-10">Swidget 1.0</a> widget and many other <a href="http://www.widgetbox.com/">great free widgets</a> at <a href="http://www.widgetbox.com">Widgetbox</a>!</noscript></div>Chantal, Anthony and Lilyhttp://www.blogger.com/profile/16016676603803839322noreply@blogger.com0tag:blogger.com,1999:blog-1764023316373579728.post-78463899008637230402009-08-19T16:21:00.003-04:002009-08-19T16:49:25.354-04:008-19-09The cute things are just growing now! Last night I told Lily if she ate her steak that she could have a cookie. She looked at me and said "Popsicle, ok?" Oh, how she is learning the art of negotiation ALREADY!! She was eating and spilled some on the floor, looked down at it and said, "It's ok" (she clearly understands that messes are the norm around here, lol). While we were eating she pointed to each of our drinks and said "Daddy's drink, Mommy's drink, Lily's drink!"<br /><br />She has had such a great couple of days with her speech. She has been talking actual words nonstop. She is constantly talking with her toys. Today she found one of those horses on a stick at the dollar store so she's saying "Giddyup Horsie! Horsie Ride!" Then she rode it from the car to the front door (all the while saying giddyup, lol). She then proceeded to throw it on the roof of her "fort" (it's her climber, but we put a blanket over the top) and then said, "Help!!" followed by "I'm coming Horsie!" Then when she reached him, "Come on, come on, follow me!!" and brought him back down the tower. At the store she actually wanted TWO of those (one of each color) and I told her she could only have one, so she picked the brown one. I could see her mind working as she kept looking at the other one and I reminded her that she could only have one. As I began to push the cart away she said, "mommy too?" as she pointed to the other horse. I told her nice try, but "mommy" did not need a horse.<br /><br />While we were at the dollar store I solved one of those great mysteries. Lily has been saying "Coco Bana" from time to time and I've had NO IDEA what in the world that was. Today she saw something at the dollar store and said "Coco Bana, Coco Bana!" and was pointing frantically. I was so excited I pushed the cart closer to her point and sure enough, there it was...a Kung Fu Panda coloring book, lol.<br /><br />We had her evaluation yesterday for preschool. We still have to go back in a couple of weeks for a follow up, but I was glad that she stayed very true to her typical self. They seemed extra impressed that she was able to amuse herself so well, which I thought was funny because they had her play in a room that was FULL of toys. Of course she had to check out everything! It was a little embarrassing and out of character for her to have answered this one question...<br />They were taking things out of the pretend fridge and asking her what they were. They got to this white bottle that was presumably suppose to be milk (though she doesn't drink that and it didn't look like the gallon-container she would be use to seeing in our fridge) and when asked what it was Lily responded with "Beer" LMAO now, but it was quite embarrassing, especially since we don't drink Beer in our house and she's never even said that word before! I assume that will be the first of MANY embarrassing moments.<div class="blogger-post-footer"><script type="text/javascript" src="http://cdn.widgetserver.com/syndication/subscriber/InsertWidget.js"></script><script>if (WIDGETBOX) WIDGETBOX.renderWidget('22e1e9f2-1ae5-47bf-8a85-e91998504269');</script><noscript>Get the <a href="http://www.widgetbox.com/widget/swidget-10">Swidget 1.0</a> widget and many other <a href="http://www.widgetbox.com/">great free widgets</a> at <a href="http://www.widgetbox.com">Widgetbox</a>!</noscript></div>Chantal, Anthony and Lilyhttp://www.blogger.com/profile/16016676603803839322noreply@blogger.com0tag:blogger.com,1999:blog-1764023316373579728.post-80593752099962236622009-08-16T21:12:00.002-04:002009-08-16T21:20:54.874-04:008-16-09Just wanted to update on a few cute things Lily has done today. This morning the hubby told her "Good Job!" and she turned around and said "good job, give me five' and ran over and gave him a "low five", it was very cute. Later Lily was playing with her stuffed dog and was pretending that it was giving her kisses and she said, "aw, that's nice"<br />In the tub she was playing with her Dora toys and she was talking with them and making them talk back! She was saying "Do it again?" with Dora saying "Sure!" and then of course she was talking with Boots as well and making all kinds of commentary. Lily is taking speech by storm and I am loving every minute of it!<div class="blogger-post-footer"><script type="text/javascript" src="http://cdn.widgetserver.com/syndication/subscriber/InsertWidget.js"></script><script>if (WIDGETBOX) WIDGETBOX.renderWidget('22e1e9f2-1ae5-47bf-8a85-e91998504269');</script><noscript>Get the <a href="http://www.widgetbox.com/widget/swidget-10">Swidget 1.0</a> widget and many other <a href="http://www.widgetbox.com/">great free widgets</a> at <a href="http://www.widgetbox.com">Widgetbox</a>!</noscript></div>Chantal, Anthony and Lilyhttp://www.blogger.com/profile/16016676603803839322noreply@blogger.com0tag:blogger.com,1999:blog-1764023316373579728.post-46506608040617195852009-08-13T17:43:00.003-04:002009-08-13T18:27:58.523-04:00Lily Clip<p><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dzPRUI9sQ5v1c-dzU7NQweg5aGzK11e9J1ZEtMSlLG6ypRS2GWBkVxntej55kpF_G9CKJnlXhjwB5r52rC5RQ' class='b-hbp-video b-uploaded' frameborder='0'></iframe></p><p>Here's a clip of Lily trying <span class="blsp-spelling-corrected" id="SPELLING_ERROR_0">desperately</span> to swim after the camera so she can take a look :)</p><div class="blogger-post-footer"><script type="text/javascript" src="http://cdn.widgetserver.com/syndication/subscriber/InsertWidget.js"></script><script>if (WIDGETBOX) WIDGETBOX.renderWidget('22e1e9f2-1ae5-47bf-8a85-e91998504269');</script><noscript>Get the <a href="http://www.widgetbox.com/widget/swidget-10">Swidget 1.0</a> widget and many other <a href="http://www.widgetbox.com/">great free widgets</a> at <a href="http://www.widgetbox.com">Widgetbox</a>!</noscript></div>Chantal, Anthony and Lilyhttp://www.blogger.com/profile/16016676603803839322noreply@blogger.com0tag:blogger.com,1999:blog-1764023316373579728.post-9587086348051244332009-08-13T15:55:00.002-04:002009-08-13T16:28:05.663-04:008-13-09Lily of course, continues to do very well. Her speech is, in my opinion, remarkable for how far she's come in what I feel is a very short time considering the obstacles that she has been able to overcome. Yesterday I put her on the phone with my sister and told her to say "Hi Aunt Sonia", not only did she say that, but she added, "How are you, how are you doing?" I was floored to say the least. The other day we were washing her hands and she said "Too hot! Colder!" We were at the pool yesterday and before we left she continuously said "Bye" while waving to a group of teenage girls, (who sadly didn't even look up at her) but it was just another moment where she didn't need to be instructed as to what to do in a social situation.<br /><br />I have kept Lily on her medication without altering it, even if sleep has been effected. I'm finally back to sleeping in my own bed!!! This has been a huge accomplishment, but also a very necessary one (Lily is a very "active" sleeper). I would not have been able to do it without Lily being on the trazodone though.<br />Lily still wakes in the night, sometimes putting herself back to sleep after some babbling, sometimes staying up for 2 or 3 hours. But when she has been up she does understand that it is time for bed, but sadly she just isn't tired. I try not to get up with her (been having the hubby do that if necessary, she seems to get too excited when she sees mommy...oh darn, lol).<br /><br />Lily's been tantruming more often if she doesn't get her way, one typical two behavior I wouldn't have minded avoiding. Part of it is our fault. When she began being able to tell us what she wants, we would give it to her. This really helped reinforce Lily's drive to continue to learn and push herself. There comes a time though, that she can't always have ice cream.<br /><br />In just two short months our two-year-old, will be a three-year-old. Seems so hard to believe!!<br />Next week she will have her evaluation for preschool. I really feel that she is ready for school and would greatly benefit from it. Depending on what our school options are, I may end up putting her in a regular classroom and tell them that she has some speech delay. At this point, I would be surprised if anyone would mention anything to me that would imply that she had any other difficulties other than some developmental delays. Lily doesn't understand a lot of basic questions yet, which may raise a flag, but other than that she's coming into her own.<div class="blogger-post-footer"><script type="text/javascript" src="http://cdn.widgetserver.com/syndication/subscriber/InsertWidget.js"></script><script>if (WIDGETBOX) WIDGETBOX.renderWidget('22e1e9f2-1ae5-47bf-8a85-e91998504269');</script><noscript>Get the <a href="http://www.widgetbox.com/widget/swidget-10">Swidget 1.0</a> widget and many other <a href="http://www.widgetbox.com/">great free widgets</a> at <a href="http://www.widgetbox.com">Widgetbox</a>!</noscript></div>Chantal, Anthony and Lilyhttp://www.blogger.com/profile/16016676603803839322noreply@blogger.com0tag:blogger.com,1999:blog-1764023316373579728.post-23525319986272642362009-08-07T12:41:00.002-04:002009-08-07T13:06:55.871-04:008/7/09Lily has been doing great so far, now that we have her back on her <span class="blsp-spelling-error" id="SPELLING_ERROR_0">meds</span>. I don't know how to taper her off them without putting her through hell, so for now I'm keeping her on them. She has an evaluation in a couple of weeks to test her for preschool and I really want her to have a placement that fits her needs. We can't afford for her to be having an "off" day, otherwise we could get a bad <span class="blsp-spelling-error" id="SPELLING_ERROR_1">eval</span>. I want to make sure that she is placed where kids have a higher skill level than her so she can learn from them.<br /><br />Lily is talking up a storm now, though she still struggles with being understood sometimes. She's really trying to overcome her <span class="blsp-spelling-error" id="SPELLING_ERROR_2">apraxia</span>. She's been able to say big words now (earlier this week she said "I'm accomplished" and today she said "Madame Blueberry") and is starting to say a lot more spontaneous commentary, like "Awesome!" Now sometimes she will actually call my name to get my attention before she says something. The other day when we were at the pool she wanted to hang out by a group of teenagers, so I let her for a few minutes and then swam over to relieve them of her and she pointed at me and said "my mommy" and looked at the girl she had been sitting next to, as if to introduce me.<br /><br />I've been excited about a couple of things that are starting to emerge for Lily. I've been trying to teach her the concept of "where" as in a location (friend's houses, home, the pool, the store, etc.) Whenever I would ask her "where are we" she wouldn't understand the question, but last week she answered me as I asked her when we got to my sister's house, she said "Aunt Sonia's House!" and the other day I said the same thing when we arrived home and she said "Home!"<br /><br />I've also been trying to teach her "what do you see?" so she can point to things outside that she sees and share them with me, as I often do with her. She's starting to grasp that question as well. It's difficult for kids on the spectrum to understand "what, why, where, how" among others, but she'll get there.<div class="blogger-post-footer"><script type="text/javascript" src="http://cdn.widgetserver.com/syndication/subscriber/InsertWidget.js"></script><script>if (WIDGETBOX) WIDGETBOX.renderWidget('22e1e9f2-1ae5-47bf-8a85-e91998504269');</script><noscript>Get the <a href="http://www.widgetbox.com/widget/swidget-10">Swidget 1.0</a> widget and many other <a href="http://www.widgetbox.com/">great free widgets</a> at <a href="http://www.widgetbox.com">Widgetbox</a>!</noscript></div>Chantal, Anthony and Lilyhttp://www.blogger.com/profile/16016676603803839322noreply@blogger.com0tag:blogger.com,1999:blog-1764023316373579728.post-59940119162569256132009-07-27T16:03:00.003-04:002009-07-27T16:34:51.373-04:00I've been wishing for the time and energy to do more updating. Lily has not been doing well on her new medication lately. Lily's body make-up has always been different than the typical (big surprise). With her, it generally takes very little to effect her, but on the flip side she gets use to things quickly as well. We started her off on 25mg of trazadone and though it did not help her sleep for long, she woke up saying "Happy, Happy!!" and was in a great mood just a few hours after taking it. Since it is an antidepressant, antianxiety medication, it really did it's job. The problem was, every 5-6 days I would have to increase her dose for her to stay level, otherwise her body seemed to go into a depression, as if she is going through withdrawls. Increasing her dose has been fine. She's been doing well and sleeping most nights (she has been averaging 6-8 hours). Unfortunately, she is at the most medication that she is allowed and since I can't increase it she has been completely miserable. She's been crying ALL the time and telling me that she is sad and she's not eating or sleeping well at this point. I have no choice but to wean her off of the medication, so we started to do that a couple of days ago and it has been even more of a nightmare. Now with the lower dose she's not sleeping and is feeling so awful. She comes to me for comfort that I can't provide. I can't change how she's feeling on the inside and it makes me feel horrible. She's been especially clingy lately and gets upset if I go or am gone for too long.<br /><br />On a more positive side, Lily has been able to say more words (though just recently with the depression it has decreased). Last week we went swimming and she told my sister "Sonia pool too" because she wanted my sister in with her, but my sister didn't have her suit on so she couldn't comply...so Lily said a very forceful "IN". She has been using more words together. Instead of just saying 'again" for things, she'll usually say what it is as well, like "Word World Again", so I can play her show over when it is done. I also heard her say 'I kick it" as she was kicking the door. She has been "showing" me things on her own lately, which is new skill for her. Typically children start to do that by 12 months. We're trying to improve her joint attention, which has been difficult. I was hoping once we got her sleeping that we could start some new therapies to help with that, but it seems I'll just have to wait yet again, at least till she's back to her regular self. I spoke with the neurologist office about giving her some medication that is strictly for sleeping, so if I can get that and it works, that would be great...so that's my new prayer.<div class="blogger-post-footer"><script type="text/javascript" src="http://cdn.widgetserver.com/syndication/subscriber/InsertWidget.js"></script><script>if (WIDGETBOX) WIDGETBOX.renderWidget('22e1e9f2-1ae5-47bf-8a85-e91998504269');</script><noscript>Get the <a href="http://www.widgetbox.com/widget/swidget-10">Swidget 1.0</a> widget and many other <a href="http://www.widgetbox.com/">great free widgets</a> at <a href="http://www.widgetbox.com">Widgetbox</a>!</noscript></div>Chantal, Anthony and Lilyhttp://www.blogger.com/profile/16016676603803839322noreply@blogger.com0tag:blogger.com,1999:blog-1764023316373579728.post-2622894815218608342009-07-12T22:13:00.005-04:002009-07-12T22:58:35.053-04:007-12-09<span style="text-decoration: underline;">Lily loves to hang out by the pool!</span><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXqRrSBOA2car19rYMiVA7F0rBrtuQfPEpKEk4vPTpG2i1IwFsArkIKDdCowxyCiwcbwufocu5NKtaWJ0qcagjCCMbkV7CvZOQNgTMvTk8ZDEeICMZ8GAiBVmt2pWj6M7eeSx3myoJulaF/s1600-h/Picture+jjuly+2009+017.jpg"><img style="cursor: pointer; width: 200px; height: 150px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXqRrSBOA2car19rYMiVA7F0rBrtuQfPEpKEk4vPTpG2i1IwFsArkIKDdCowxyCiwcbwufocu5NKtaWJ0qcagjCCMbkV7CvZOQNgTMvTk8ZDEeICMZ8GAiBVmt2pWj6M7eeSx3myoJulaF/s200/Picture+jjuly+2009+017.jpg" alt="" id="BLOGGER_PHOTO_ID_5357769449121501922" border="0" /></a><br />Here is Lily trying to sing the song "Poker Face", one of her new favorites:<br /><input id="gwProxy" type="hidden"><!--Session data--><input onclick="jsCall();" id="jsProxy" type="hidden"><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dx-wC6kRPZWNjLNjAyFriYwLrOgVkiLpLaIpnnqkX0AXDoeLvRJJ1RDDa6gUEDs9I0EYTl9ApFiUFzPKHYqQQ' class='b-hbp-video b-uploaded' frameborder='0'></iframe><br /><br />Lily has been FINALLY getting some rest. As a result she is flourishing even more. We're still not on the best schedule, she goes to bed usually between 12-2am in order to ensure she will sleep through the night, but we're finally making some progress! Her new medication for sleeping has been allowing her to actually get some DEEP sleep, which is very new to her. It scares me a little because she really is out for the count and her breathing seems really shallow but she wakes up feeling refreshed and happy...what a concept! She is really talking a lot more and we are really excited about all her progress.<input id="gwProxy" type="hidden"><!--Session data--><input onclick="jsCall();" id="jsProxy" type="hidden"><div id="refHTML"></div><div class="blogger-post-footer"><script type="text/javascript" src="http://cdn.widgetserver.com/syndication/subscriber/InsertWidget.js"></script><script>if (WIDGETBOX) WIDGETBOX.renderWidget('22e1e9f2-1ae5-47bf-8a85-e91998504269');</script><noscript>Get the <a href="http://www.widgetbox.com/widget/swidget-10">Swidget 1.0</a> widget and many other <a href="http://www.widgetbox.com/">great free widgets</a> at <a href="http://www.widgetbox.com">Widgetbox</a>!</noscript></div>Chantal, Anthony and Lilyhttp://www.blogger.com/profile/16016676603803839322noreply@blogger.com2