3/1/10

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

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

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

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

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

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

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

Here are a few other things she said last night:

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

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

2-7-10

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

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

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

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

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

More to come later!

Pic

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

12/21/09

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

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

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

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

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


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

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

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

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

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

11/23/09

Lily, 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 definitely coming out of her own world to meet everyone, not just people she cares for.

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 reiterate that she is indeed, speaking to ME. She also has been saying "ok" 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).

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 Nemo recently to get that comment).

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.
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, lol.

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.
She also has been calling our attention to things and saying "look at this" or "watch this".

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 ok, particularly 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 probiotic 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.
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!! Yay!!

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 there'll 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!

10-30-09

Lily 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.

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.

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!"
Gotta love it.

10/17/09

My 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!

I went to an eligibility 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 cognitive 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?
We put together her IEP (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, yay!

Lily will be starting preschool on monday! We checked out the school and it seems perfect. I heard wonderful things about their preschool program.
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 IEP 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 th/fri, but I'm thinking this may be really good for her, so I'll just see how it goes.

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".

10/7/09

Well, 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).
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.
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.

10/5/09

Lily has been excelling in so many ways! I have taken her off her antifungal 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 antifungal 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.
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?"
I had tears streaming down my face it was just too funny! I've always told Anthony to stop bothering her for kisses, lol.
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 :)
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 "anthony 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 ok" "I love you" and gave him a big hug.
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 lilly 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 lilly pads. Then she saw a duck and started yelling, "Hi Duck!!" several times and giving him a great big wave.
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.
She's also been singing the songs she loves so much with different rhythms and tones. She thinks it's fun that she can do things "her way" if she wants to. Just now instead of singing the itsy bitsy spider, she said it out loud without singing, as if she was telling a story.

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 stomach and I would tell her "don't kick your brother!" and she would be adamant 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, lol. She'll have her sister around mid March and yet another journey will begin!

9-28-09

It'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(nonresponsive, 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.

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:

• 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 WHYYYY?" Which has been her third why question that I've heard, so I'm excited about that.
• She was with Anthony at the pool and said "Baby started crying" after just that! She really has her "ing" and "ed" words down, which is great. At this point any sentencing coming out of her mouth is great to hear.
• She's been more actively playing chase and her singing has really increased, as well as her speech and articulation.
• Lily always had trouble with thinking about things in reverse. She could always fill in the blank with things like "the pig says oink" but when asked the reverse "oink says the ?" she would say "oink", but can now say pig (as well as all the other animals)
• She just recently started asking "mommy, what's this?"
  

Lily had her second eval 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 stereotyped 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.

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 echolalia (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 any kind 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?"
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.

Here's what I pulled off the net:
An auditory processing disorder (APD or CAPD) 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.

Symptoms
The symptoms of APD are extremely varied, however, some of the most common are:

• Children who say “huh” or “what” frequently
• Children who don’t look or respond when their name is called
• Children who give slow or delayed responses to people talking to them
• Children who mispronounce typical word sounds
• Children who have difficulty following oral directions
• Children who misunderstand what is asked or said to them …these children usually answer off topic or don’t answer at all.
• Children who are easily distracted or become confused especially when there is background noise
• Children who avoid loud noises (cover their ears) even around common household noises
• Children who show delays in acquiring language
• Children who evidence difficulty learning phonics, reading and spelling

Symptoms of APD can actually be seen in infancy, however, they usually become noticed at about age 18-24 months.

8-19-09

The 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!"

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.

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.

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...
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.

8-16-09

Just 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"
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!

Lily Clip

Here's a clip of Lily trying desperately to swim after the camera so she can take a look :)

8-13-09

Lily 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.

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.
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).

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.

In just two short months our two-year-old, will be a three-year-old. Seems so hard to believe!!
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.

8/7/09

Lily has been doing great so far, now that we have her back on her meds. 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 eval. I want to make sure that she is placed where kids have a higher skill level than her so she can learn from them.

Lily is talking up a storm now, though she still struggles with being understood sometimes. She's really trying to overcome her apraxia. 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.

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!"

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.

I'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.

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.

7-12-09

Lily loves to hang out by the pool!

Here is Lily trying to sing the song "Poker Face", one of her new favorites:


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.

6/25/09 update with pics

Lily is doing wonderfully. We had another visit to her neurologist on the 15th. She informed me that Lily's sleep issues (as well as apnea episodes) could be a result of low Ferritin levels that showed up on her bloodwork. Her recommendation is to bring up Lily's Iron levels. It's possible that Lily may sleep better once her numbers get better, so we've put her on an iron supplement, but it could take awhile for us to see any improvement. She recommended that we put Lily on a "sleeping pill" (Trazodone). This medication is typically used as an antidepressant, antianxiety medication, but is sometimes used to treat insomnia. From what I understand it is not approved for use in children or adolesceonts. It can also take some time to build up in your system before it starts working (about a week).

I was a little concerned in giving this medication to Lily. Part of me says, trust the doctor, but the other part of me says, trusting doctors is what gave Lily autism, so I'm leaning more on trusting God to give me all the "mommy instincts" that I need....so Lily's been on the medication for a week and is doing fantastically on it. She's still not sleeping regularly, however, this medication has turned Lily around in SO MANY WAYS. It's been a great gift. Her speech is remarkable and she is just SO HAPPY. From the very first dose she was a different child. She actually walks around saying 'Happy, Happy!" as if she has never known what it felt like before.
She is so much calmer and is able to relax and enjoy small things. Her attention is better and she seems to look at things differently, as if she is seeing the whole picture now instead of just pieces of it. I am so enjoying her joyous mood! She's not like that all the time (who is) but she definately is feeling better than before and it is making her progress so quickly. I'm not sure if the neurologist secretly thought this medication might help in other ways or not, but it has been wonderful. Lily has not climbed on anything except the climber that we bought for her...this in itself is a HUGE thing!

We went to speech therapy today and her therapist IMMEDIATELY said "this is NOT the same girl, what did you do?!!" I told her and she said that she was very interested in calling the neurologist because she just could not believe how different she is. Her eye contact and facial expressions are much more animated and she really has a greater desire to interact with others. She's able to speak so much better that the speech therapist said that when she gets tested again she may not qualify as delayed enough to receive services (if we lived in hillsborough county, pinellas apparently has higher standards thankfully).

Lily has really been able to get her feelings and wants acrossed for the most part. Last weekend before I left for work I told Lily that I needed to go to work and she slumped her shoulders down and made a sad face. Then she held onto me for dear life and said in a sad voice,"cry". She was such a big girl, no tantrums or actual crying, just an understanding that I had to go, but her wanting to let me know she didn't want me to.

The other night Lily was saying "House" very adamently. I asked her what she wanted and she said 'bye, bye", brought me to our foyer, pointed to my shoes and said 'shoes on". I told her she needed shoes as well, so she put her shoes on, picked up her diaper bag, said "bag", handed it to me, said "car keys" and "bye, bye" again as she opened the door. Unfortunately, it was 11:30 at night. I'm not sure she was expecting it to be dark out because as soon as she opened the door, she just stood there, lol. We went for a walk around the building and she pointed to the pond and said "water" and pointed up and said "sky". I'm still not sure just who's "house" she wanted to go to, lol.

Tonight a friend of mine babysat Lily and I was able to drop her off and Lily just gave me a wave and said "bye, bye! Love you!" It was the most wonderful feeling! Before we even went I asked her if she had wanted to go to her friends house and she remembered who it was and got very excited and jumped up and down and quickly got ready to go (that's another amazing thing). She usually will mimick my animation and get excited to go places but only because she's excited for "something" that she thinks will be fun, never anything specific. On the way to the car she said "Megan's House!!" and was giddy over it.

Lily still has a ways to go, but I could never have imagined how fast she would progress. Every night we pray for her to continue to astound us, and she does! Everyday is a gift and there seem to be more and more 'highlights" to my days. It's bittersweet though when I think of other families who aren't as fortunate to see such fast progress. It's really heart wrenching to me that there are other children struggling much more than Lily is. I only wish that weren't so. I fail to understand why that happens and what can be done about it. I know how truely blessed we are and I don't take anything for granted. We all celebrate small victories.

6/13/09

Well it has been quite some time since the last post. We've been very busy with lots of different day to day things. Since the last post we've had a visit with Lily's DAN Dr. which was promising. Her urine and stool tests came back better than before, but still a lot of yeast. We changed antifungal medications (for the third time). Since stopping the last antifungal Lily has really improved in several ways. She is much less hyper, has a greater attention span, etc. That antifungal really did a lot to her system. I hate trial and error, but there really is no other way.

Lily has not had any seizures that I have noticed, though shortly after the last post she did wake up gasping for air twice during one of her naps. This could be sleep apnea or seizure related. I happenrd to be looking at her when she did this, both times crying afterwards but able to get right back to sleep. I don't know how often she does this, but she does often wake up crying in the night (and always has).

We've cut down on her therapies, because at this point I believe that her sleep is her best medicine for improvement. For whatever reason her body doesn't seem to let her sleep more than 3-6 hour stretches, which she gets usually in 2-3 stretches in a 24 hour period. I hate waking her everyday to go to therapies. I think we will ultimately be doing just tuesdays and thursdays. Lily now says "mine" and seems to understand the consept. Lily has been talking up a storm and is putting 2 and sometimes 3 words together on her own. She still struggles with the apraxia but is able tell you things she wants and can be understood by mommy and daddy best, but her clarity is getting better everyday. Lily is routinely telling me "no' and protesting lots of things as two year olds often do. She is tantruming more for stupid things likes diaper changes, getting dressed and she HATES to take a bath and cries quite a bit in protest.

Lily is doing great in the pool and that seems to be a good, fun way for her to strengthen her core. We spend time in the pool most everyday. Lily's imaginative play has also increased and it is so fun to watch her. Her therapists continue to be very impressed with her progress.

I'll update more soon and put some pix up within the next few days.