Friday, September 26, 2008

Lily Movie Clips

9/26/08

Lily is doing fantastic with her signing! She is learning very quickly. Today she learned the signs for baby, book, and monkey. She went on the potty twice today. The first time she took off her diaper (which was dry) so I put her on and the second time she went on it all by herself (unfortunately with the lid on! It has since been taken off permanently, lol). I hadn't put her on it for the past week because I didn't want to push the potty issue, but she seems to be telling me she is interested.
Lily's been having some gas lately, so I've put her back on some probiotics. She did sleep through the night last night, so I'm hopeful that will take care of any discomfort she's been having. She's been fighting going to bed at night, they always have to test the waters from time to time!

I'm very confident about her comprehension at this point. She has come so far in such a short time, praise God for chelation! She just continues to absorb so much around her. I pray that the speech will come easier for her. Some children speak later than others because they aren't ready or don't want to. Lily wants it and tries everyday. It's hard to watch your child struggle for something they want so badly. She'll get it though. Before I know it she will be chatting it up and driving me crazy, but I will NEVER wish for anything different!

Thursday, September 25, 2008

EEG Day

Today Lily had her EEG. They wanted us to keep her up late and wake her early, in order for her to be sleepy for the test. Despite her sleepiness, it didn't stop her from screaming for an hour. It was heart breaking. They figured she'd cry herself to sleep, I knew better. I hope they got what they needed. They said she'd need to fall asleep to get an accurate reading. I'm guessing screaming wasn't exactly very productive. They said they got what they needed (there were a few minutes here and there when she was quiet, but very few). It takes a week for the results, so we'll see.



A couple of days ago I brought her to the eye doctor and found out that her light sensitivity is due to damage from the pink eye she had about 6 weeks ago. Apparently it can damage your eyes for 3-4 months. Hers showed inflamation in the back of her eyes, so we get to hold her down and give her eye drops (that seem to sting) twice a day for 10 days (Hooray!!). I'm hoping her light sensitivity will go away as soon as her eyes heal.



On the brighter side, Lily is still learning new stuff everyday. Today, for the FIRST TIME EVER she brought me something that I requested, yay! She is getting better when I tell her to look at me, which is what I need to do before I ask anything or else I usually get ignored. There is a tinkerbell movie clip that she loves that we often watch on youtube and she spontaniously said "open" today at the same time the fairy did. We were very excited about that, though, of course, she wouldn't do it again. She is signing quite a bit now and it seems to have lessoned her frustrations. I've only been working with a few, making sure she gets those down before I put anymore in the mix. I'm so excited that she can tell me when she is thirsty or hungry or if she wants more (which I've been trying to teach her can go beyond food).

I've been trying to teach her the sign for dog, which is panting along with a couple of taps on your leg. She pants like a dog now when you ask her what the doggy says, which is very cute.



She knows the word "up" but still often struggles to say it. She will sometimes just do the noise for the fish over and over instead of saying up and then she starts to cry because she just can't get the word out. It makes me very sad. She really has been trying so hard. It just seems like there is a connection that is not always working.

Lily is back to spinning a lot again. I wish I could stimulate her in some other way to achieve what she is looking for. We went to the park today and Lily had a GREAT time. She just loves being up high and we go to a park that has a high lookout tower that she adores.

I made a few contacts this week on some resources for Lily. Her speech therapy will increase soon to twice a week and our service coordinator through Early Steps has gotten in touch with someone to come in to do some occupational therapy and they are suppose to call me next week. I am also suppose to be getting a call back in regards to some ABA therapy and have someone come and assess how much she'll need everyweek. I'm also waiting to hear back from a clinic in Tampa as to what our insurance will cover there for BioMedical Treatment (they would test her for things and recommend different suppliments, since autism is an autoimmune disorder it usually does some fantastic things, like the chelation is doing). I feel very releaved to actually have a plan in order, or at least an idea of how things will be going. I have a plan "B" for things as well, in case things don't pan out exactly how I'd like them to. I just pray that God stears me in all the right directions so that I don't waste any time. We've only got another year to make the most difference, after age 3 it will be more difficult to make as much of an impact.

Going to have to start buying fall clothes soon! Lily is growing so fast and it is starting to get a little cooler. Poor thing had to wear last season's jacket this morning, and it was a little small. We picked up a couple tonight, but we'll have to restock her wardrobe, shoes included :) It's so amazing how fast they grow!

Saturday, September 20, 2008

9-20-08

I just can't believe the progress that Lily has had this week. Her eye contact is amazing and her comprehension and response has improved so drastically. Today I asked her where Daddy was and without even taking her gaze off of the TV, she pointed to him. It made me laugh. She now knows what the "fishy" says, thanks to a new noise she made up, that to me, sounds like a noise a fish would make when they come up to the surface.

She has been interacting with the cat like crazy (boy, he sure is patient with her, and VERY gentle). Today I asked her where Jasper was (that's the cat) and she actually went around looking for him (generally she might glance around a little and then lose interest). She is signing "all done" very well now and is adamant about using it often and repetitively to get her point across. She is starting to try to communicate her wants more often, by showing us more of what she wants. Today she wanted Anthony to follow her so she opened and closed her hand at him like "come here". She also knows how to "smell" now. Seems weird, but I've been trying to get her to do that for a year now.

I went to a conference today for children with disabilities. They had TONS of great information and I am excited to look into some new therapies for her. I really don't want to send her to school unless I can be there with her. I don't think she's ready for that, and she is progressing so well now that I'm hoping other therapies will work in it's place.

Anthony taught her to shake her finger for "no, no, no" in response to "what does mommy say?" He's been trying to teach her that for a really long time, ever since he saw a little baby do it on youtube over a year ago. He thinks it's so funny....ok....I think it's cute too :)

My Dad came back from a long trip out of state. He's been gone since about a week after we started the chelation. He can't believe that she's the same child! He is so excited about her progress (aren't we all?).

For some reason this week seems to have had a lot of new lightbulbs go on for her. I think that's God's answer to prayer. It was a rough week with the "official" diagnosis, and it made me doubt some things, but God is trying to remind me that he is in control of the situation......and I couldn't be happier to have him in charge.

Wednesday, September 17, 2008

Learning new stuff...

Lily has been able to control her bladder for quite some time now (close to a year I think). She often wakes up dry and then fills her diaper after she wakes up. I put her on the potty several months ago, just to see how she'd respond. She got right off of it (while screaming) and squatted next to it and peed on the floor. She just didn't want to sit on it and was scared of it, so I hadn't put her on it since. At the end of last week she took her diaper off and peed on the floor, so I figured I'd try her on it after naptime just to see how she'd respond. Well after nap I put her on it right away (timing is everything) and she didn't do anything so I tried to take her off of it and she wouldn't let me. Sure enough, she peed in the potty and got up when she was done! She peed on it a couple of times after that (they were timed well). I'm not pushing the issue at all, I just wanted her to know what it was for and to not be afraid of it.

Today she actually BROUGHT ME the potty out of the bathroom for her to go! I was very excited. She knows what it is called and said "potty" a couple of times yesterday. I'm not expecting much and I'm not going into full bore potty training or anything but I just thought this was a great achievement! Most toddlers do not want to stop playing to go to the bathroom, the cause of most accidents (I think). Lily has a double helping of this, so I'm not sure how it will go when we do really start to get into potty training, especially since she hasn't been able to vocalize that need. We'll have to work on a sign for it I guess, but her other signs are so inconsistent now. When they become more consistent I think then will be a better time to really get into things. Until then, Hooray for the little achievements!!!

Tuesday, September 16, 2008

And the verdict is...

And the verdict is.......moderately autistic. I was hoping for mildly autistic, but you get what you get and it doesn't change anything. Lily is still today who she was yesterday, a fun, loving, wonderful treasure that the Lord has blessed us with and has entrusted her into our care. We will do our best for her.

And the bad news is.....she has to go to school. I'm not looking forward to this. We've been that route and it didn't go well. I guess I will just have to look into it and see what it's about. I don't want Lily stressed out.

She also has to have speech twice a week and occupational therapy twice a week. With me working weekends, that doesn't leave me with much time with her. That is what saddens me the most. I guess I will just cross that bridge when I get there and try not to think of it all at once. These things take time to put into place anyway.

They want her to have an EEG (i think it tests for seizures) since she had speech and then lost it. They have to hook her up to a machine with a million different wires on her. How they will do that without her ripping everything out, I don't know. From what I understand you can have seizures without any symptoms. They want to test her both awake and asleep. How that one will happen, I have NO IDEA! I have to find a place that does that and make her an appt.

They took her blood today also to test for chromosomal abnormalities....hooray.
Anyway, that's it. It was hard to read that about her in black and white...."autistic". I know I knew this and was not surprised at all, but it still just makes it all so final. I guess I just wanted to be wrong. The doctor said she could go through life needing an aid or being independant. There is no way to tell yet. The fight is only just beginning....but I know we will come out victorious. With God all things are possible.

Monday, September 15, 2008

9-15-08

Lily keeps on excelling! She is not very consistent (at all yet), but is signing more. She can sign "drink" "more" and "all done" (as well as "eat" and "hat" but she's been doing that one for awhile). She now says "up", but sometimes still has difficulty and gets frustrated. She said "baby" three times yesterday, but I haven't been able to get her to do it again (she's very stubborn, lol). She also makes a sound for duck, which is all her own, lol. She has been making the attempt to say several words, not always getting them right, but the attempt is amazing. We've been working on making our animal sounds in the mirror so she can see what her mouth is doing. She is very good at doing summersaults now and is very excited about it. Her favorite thing to do is to "gallop" around the house.


The other day I watched her try to get the front door open and of course couldn't, so she came over to me, grabbed my hand and brought me to the door to help her (this is big for her, usually she just gets frustrated and cries). I wish, that she would do things like that more often, but I'll take what I can get. She's really starting to notice the cat more and plays with him more often now.


We're thinking that Lily's covering her eyes is a light sensitivity issue so I'm going to bring her to the eye doctor to see how she checks out and will also likely start some occupational therapy for it. I'm hoping it will be easy to remedy, as I really think it interrupts a lot of her day.

Tomorrow is the big day. We find out the results of her evaluation. I have mixed feelings. I'm very nervous about it and my anxiety is through the roof. I guess I'm feeling like they really didn't get to see ALL of her so will it be a fair test? I know it was, I was there, but I guess I'm just worried that they will tell me that she is worse off than I feel she is. I guess even if I hear that, it will be ok, as it will allow her to get more therapy, but I really just want to hear that she's on the mild side of the spectrum and they expect her to be mainstreamed by kindergarten. I want to know that I am right in how I feel because I feel like I know her the best. Regardless of what they tell me, it doesn't mean that's the way it will be anyway. The doctors don't believe in chelation either, but I know for a fact it works. So they don't know everything. I guess we'll just have to wait and see.

Thursday, September 11, 2008

9-11-08

The detox clay baths we've been doing really seem to be helping. I've been noticing a difference almost immediately. We do those once a week for about 5 minutes. Lily now "roars" for Lion (which I attribute to Blues Room DVD that she likes), it's very cute. She now knows the sign for eat and has been actually asking for her baba more often verbally and also used the sign for eat for it. She had a lovely time coloring herself with markers last night, my did she look pretty! She has been making more sounds. Now she says the "p" sound and put it together with her "t" sound that she has been saying and said "tape" as they said it today on Blues Clues. She likes to whisper her words and sounds though. She has also been saying the sounds for "up". She's really trying very hard!

Yesterday we went to a music class. She had such a fun time, but it also reminded me that she will be having her own agenda with things. Most of the other kids were participating and patient enough to sit with their moms and do the songs. Not my little girl! She's much too busy galloping around with all of the excitement! It was a little heart wrenching when a couple of the other moms came up to me after class and said "Lily did so good today!". I know they meant well, but I don't want her mentally separated from the group. There were at least a dozen kids there, and no other comments were made about anyone else, why Lily? Was she not suppose to be good? Were they empathizing with me because she wouldn't sit still like their kids?

Every child is different. I don't want her seen as "special". She's just "Lily". I guess this is just the beginning of many things that I have to get use to, or learn to ignore, or find an appropriate response. I was caught offguard by that statement. This is such a new world for the both of us. With Anthony being at work during the week he won't have to be in the world where she is around her peers.

So the journey continues...

Tuesday, September 9, 2008

Lily's Autism Eval

Well, today was the day. I was praying for an accurate eval, that she would just behave how she would normally and not be too fussy or anything. She did wonderfully behavior wise. No tantrums, very laid back. They were very careful not to upset her (as they were for the initial eval, which I was glad for). It was very hard to sit and watch and not try to engage her. I wanted to show them everything that she could do, and how to engage her to get a response, but that's not how it works. They need to know how SHE is, not how she is under certain circumstances with certain people. I kept wanting to show them how to ask the questions so she'd understand, or how to get her to look at them, or explain why she is doing what she is doing. That's not life though, and wouldn't make for accurate testing.

I recognized exactly what they were looking for with everything they were doing with her (this was her 5th eval), and they explained a lot of what they were looking for as well. She did a lot of her "arm over her eyes" thing, for lengthy time periods. There really is no reason behind this (no certain time she does it). She was happy and content to play with the toys. This is the behavior she chooses in place of spinning now (though she still does spin). I think mostly because she can do it anytime(sitting in the carseat, stroller, highchair). I think she does it as a way to comfort herself, like a kid sucking their thumb, only she does it quite a bit and it interrupts much of her activities (kind of like pressing the pause button for anywhere from 10-40 seconds at a time, sometimes much longer).

Mostly they were looking at how she interacted with them as well as with her environment. She didn't respond to her name even one time (even when they asked me to say it). She made very little eye contact. She did play appropriately with a lot of the toys, I think, but the blocks she lined up in a row and made sure the same side of all the blocks was facing up. She wanted to match like with like and even grabbed the duck out of the diaper bag to go along with the duck she was playing with.

They video taped everything so that they could go over it to make sure that they didn't miss anything. They are going to score everything and write up a report, which we'll see next week when we go in to have them talk with us. I'm pretty nervous about it, and that surprises me. I know she is on the spectrum, I know they will tell me that. It's WHERE she is that scares me. I don't want her to be farther on the spectrum than where I think she is. I know it really doesn't matter, she's doing so well now. I know she will continue to blossom and be mainstreamed, but there is a part of me that is scared that she won't. Anthony told me that my opinion of her is biased. I recognize that that is true. As a parent you see your child as perfect. Lily is absolutely perfect in my eyes and I just see her as needing more time to learn things and special ways of learning. Realistically I know she needs more help than just what I can give but I always just wish that if I'll just love her enough her hardships will go away. Well, I love her enough to make sure that she gets everything that needs, even if it means finding other people to do it or show me how. It's still going to be a rough road but I'm thinking with the "official" diagnosis I will be able to get her more help and move things along even faster. I know she would absorb more if she didn't need to press the pause button all the time. If I can find a way to curb that behavior (she's very persistent with that one) then I think she could do even better.

Anyway, rambling aside, I am so very proud of my little girl and can't wait to see what she learns next!

Monday, September 8, 2008

9/8/08

Well, Lily is doing wonderful, as usual. A couple of nights ago we were following some strangers away from the pool and when they crossed the street she waved at them and said "bye bye". Unfortunately, she is my one hit wonder, so I haven't been able to get her to say it again. She now knows what a tiger, elephant and pig says and she's working on snake (elephant and pig are new today). She doesn't say words for them, she is able to make the sounds and match them up though. She's getting increasingly frustrated that she is unable to speak. I feel really bad for her. It's frustrating because I have heard her use so many words and form so many sounds but she is unable to use any of them now. She can say the "t" sound and does that quite often. Her speech therapist has given me some ideas on more ways to work with her. She was much more responsive to her today so I'm excited to try some new things with her.

I'm really going to try to push sign language more now that her understanding is elevated. She did much better during therapy today (and without a nap!). She was much more cooperative with much fewer tantrums. Lily is finally doing long distance pointing!! We practiced quite a bit more this morning and she finally got it! Sounds like such a small thing, but for her it's HUGE! I was able to ask her "where is daddy?" and she pointed at him!!! We went out to eat and she started to point at things around her. We bought her a hoola hoop and she LOVES it. We play all kinds of games with it. She's still doing great with textures and played with some play dough this evening.

She continues a little bit of pretend play. When we were over my friend's house I was holding her 6 month old and Lily picked up a baby for her to hold. It was very cute. She plays really great with her little boyfriend, who is only a week younger than her. They have been starting to interact more with games of chase and taking turns with toys. If he doesn't want her to play with something he gently pushes her hand away (over and over) and she is totally fine with that, though she's more persistent then he is, lol. Neither of them gets upset. He often follows her lead and helps her put her toys in a row.

Recently I bought her some new mickey mouse magnets because she had torn apart her old ones. Well she quickly tore apart the brand new ones to "match" the old ones (i.e. both donald ducks are missing their feet). Guess I should have thrown out the old ones first, but who knew? It took her a month to mess up the other ones and two days to correct the new to look like the old, lol.

Tonight Lily figured out how to drink from a straw!!! Yay!!! I was much more excited about this than Anthony. I get so excited over every little achievement. :) I have a sippy cup for her that has a straw component and now she will be able to use it.

Tomorrow Lily has her appointment to test exactly where she falls on the spectrum. We won't get the results back until next week.

Friday, September 5, 2008

9/4/08

Lily finally started "swimming" today! For the first time ever she kicked her feet and moved her arms :) Of course she was watching her friends do it at the time. She does so well around other children. She had a great time playing in a pile of mud today! Confirmed for me that she no longer has texture issues!

Thursday, September 4, 2008

9/3/08

Lily is doing great, as usual. She has taken a liking to looking at human faces (I know that may seem weird, but most kids have that as infants). She likes her books that have photos and she looked through a bunch of pictures with me today on the laptop (for almost 10min, which is great for her or probably any toddler!) She has really been captivated by my mouth when I talk. She looks at my mouth with an expression on her face that reads "wow, how do I do that too"?

Since she has mastered the "tiger noise" I tried with the cow today. My poor girl tried SO hard to say "moo". She persed her lips and then put them out like a duck, lol. FINALLY she managed to say "boo" and I swung her around like a crazy woman praising her! She seemed very frustrated that she was not able to say it again, but she tried hard! She got the connection, which was what I cared about the most!

We bought her a baby doll recently and she played with it today like crazy! She took turns with it on the slide and praised the doll after it went down, lol. Since she seemed like she was really getting into some pretend play, I had Anthony pick up a stroller and some baby bottles to see how she would respond with those. She did give the baby a bottle (but not until after a brief try-out, lol) and she did push the stroller around, but she preferred the baby out of the stroller. We went over the baby's body parts and she pointed to a handful of them so that I could tell her what they are.

Lily is having kind of an "off" day for recollection. She could not tell me who any of her mickey mouse characters were (which I know she knew solid, with the exception of still mixing up mickey and minnie sometimes). She looked at me very confused and looked down at her characters and totally guessed which one to point to (didn't work out well). She really seemed to not know all the sudden and then pointed to each one a few times for me to tell her who they were. She also didn't know "eyes, nose and mouth" which she has been doing really well on. I hope it's just a fluke thing.

On a good note when I did my usual count to five on my fingers thing, she tried to do that herself! She concentrated hard and did the one and two herself and I helped her with the rest.

Tuesday, September 2, 2008

9-1-08

This is going to be a quick entry. Lily has been making this low growling sound for about a week now. Concurrently, I've been wanting to teach her the words "what" and "say" so that she can answer the question "what does the ________say?" (fill in with various animals)
We were over a friends house today and they have a little tykes animal flashlight (tiger) that actually makes a similiar noice to what she has been doing. She started growling when she heard the tiger and has correlated the two! Now I can ask her "what does the tiger say?" and she has an appropriate response! I've asked her several times and she has constistantly growled when asked. I'm hoping to be able to run with that and teach her many other things related. This was how "where" started (something small) so I am hoping so badly that it will grow. I have a similar "cow" flashlight that moos so I'm hoping that will be next to be heard.