Monday, December 29, 2008

12/29/08

Well, Christmas has come and gone and New Years is right around the corner! Lily had tons of fun opening her presents and surprisingly, didn't need ANY assistance :)
Lily is continuing her progress, but I think we've hit a slow patch. Not a big deal of course, but it only gets harder to watch her struggle and frustration with communication. She often starts rambling, then screams and throws herself on the floor because she just doesn't know what else to do. There are days that are better than others, but she's also at the tantrum age. She wants what she wants when she wants it and to not be able to express her wants means she tantrums more than the norm because even simple requests are not met with her expectations because I don't know what it is that she wants and she doesn't know how to ask.
On a more positive note, tonight she....

She pointed to something she wanted!!!! I could not have been more excited!! I knew what she wanted of course (her blanket that was out of reach in her crib), but I asked her what she wanted and she she signed "want" and pointed to her blanket! I hope she will continue to do that. That has been something that I've wanted her to do for SO LONG. She is also routinely saying bye-bye when she waves (not always clearly, but she does her best). I also asked her "who's that?" and pointed to Anthony and she said "Da da" which is awesome that she finally understands "who" because that can sometimes be hard for kids on the spectrum. My name is still "Bob" most of the time because she still has a hard time saying "ma ma" a lot of the time.

As far as speech goes, we've been working on getting her to say sounds for objects more spontaneously. If I ask her who her characters are she will say 't' for tinkerbell, etc. She also was able to make the "F" sound today (for Foofa, another character). I was excited that she did that one on her own, she has a harder time with mimicking the sound.

Daddy has been the one getting up with her in the night now. He has been able to get her right back to sleep, as opposed to the half hour to 3 hour stretch that it takes me. She just gets too excited when she sees me and can't get back to sleep. Which brings me to the whole separation anxiety thing that is not getting any better. I'm hoping that we can do something about that soon, because it's just not good for her. I'm not sure what can be done, don't some kids just grow out of that? It seems like such a far cry from the days when she didn't care if I was there or not. I could come and go at any time and she didn't take notice at all. Anyone caring for her would do. She didn't really have a preference. It's nice now when I come home and she gets so excited to see me and covers me with affection, but I'd like to be able to use the bathroom without her having a complete meltdown. Oh, how I would love a happy medium!!

Saturday, December 20, 2008

12-20-08

Hard to believe that Christmas is just right around the corner! Lily has been getting a few gifts in advance here and there. It's more fun for her that way, since she can easily get over stimulated. My sister gave her a gift tonight (a Backyardigans playset) and Lily was very excited and running around all over the place.
Today Lily gave her most significant communication yet. Dad's feelings may have gotten a little trampled in the process, but the progress was something to be celebrated. She said "mama up" (which by itself was a big deal) for me to pick her up and then proceeded to wave bye bye to Daddy, indicating that she wanted him to leave the room. When he didn't, she then leaned in, gave him a kiss, waved bye bye again and then tried to push him away. Since communication (verbal and nonverbal) are a struggle for her it was awesome to see her put all that together. Oh the small things...though they'll never be small to me!

Wednesday, December 17, 2008

12/17/08

Last night Anthony and I had our first meeting for RDI therapy. It seems like it's going to be a tough thing to do initially, since it's very much "this is what we are going to do right now whether you like it or not" kind of a thing. It would be tough to do with any two year old, let alone one as strong willed as Lily! It will be a good thing in the long run though.

We had another meeting with the Dr. we are seeing for Lily's Floor Time therapy. This is the therapy where you are a participant in her world and she leads the play. It has been very beneficial to her so far and her attention span, eye contact and interaction have greatly excelled since I've started to do that with her. The Dr. was very impressed at all of her progress since the last time that we were there. We will be having a grad student work with her a couple of times a week starting on friday. Lily really has responded positively to most any intervention that we have done with her, so I'm looking forward to tons more progress!!

Luckily, Lily continues to progress though she hasn't been at therapy for the past week due to her cough. I'm always so proud of how much she really tries. Socially, she has excelled the most recently. She has been seeking my attention more and has been so much more engaging. She has wanted to "share" her food and toys with us. She has started to look to us to see our reaction to things as well. Her separation anxiety has gotten worse though, so we'll be working on that as soon as we get a behavior plan together. It would be nice if I could leave the room sometime without her having a meltdown. A lot of that has to do with how long she's been sick lately. Hopefully that will turn around!!

Thursday, December 11, 2008

12-11-08




Since the last post, here are some cool things that Lily has done, some of which is a one time occurance of course:
  • She got into the bathtub and said "Bath"
  • We asked her where the moon is and she pointed out the window at it and said "dare"
  • We were at a friends house and Mickey's Christmas came on the tv (her favorite) and she danced around and said "christmas"
  • Anthony taught her awhile ago to put her arms up in the air when he asks her, "how big are you?" Then Anthony usually says "SO BIG!".....well this time when he asked her she said it for him!
  • Lily has been cracking herself up lately. She'll just be playing with her toys and start laughing hysterically, so much so she gives herself the hiccups! It's my absolute favorite sound.
  • I asked her if she wanted to watch a show on tv and she said "yes", without nodding (big for her)
  • she finally dances around to music, particularly that song they play in Madagascar that says "I like to move it move it" (its her favorite)
  • just before going down the slide, she said "up" (she doesn't understand the concept of up and down yet, lol, I still think it's cute)

Lily has continued to progress in her speech, though there's still the mountain to climb at least she has started with a few steps. Unfortunately, she is sick....AGAIN. I'm not sure what to do about her constantly picking up everyone's germs. I need her to go to therapy and also be around her friends socializing but she's always getting sick. This time she has a fever that continues on and I've been having to keep her pumped with meds to keep it down. I've never had that issue before, so it's worrisome to me (though I'm not suppose to bring her in to the Dr. till day 3 of a fever, so they say and we are only on day 2). She's very congested and has been miserable in the mornings but so far she has been pretty good once she's actually up for awhile (easier to breathe then I guess). Yesterday was a no-nap day, though she needed one desperately. I think it really freaks her out to not be able to breathe as she would normally (understandably) and laying down multiples it, especially with no distractions.

It feels like a never ending cycle: bring Lily in for therapy or playgroups...sick...stuck home having to cancel therapies...better...bring her back...sick...etc. etc.

Last week I brought her to a Kindermusic Winterparty. It's a place where all the kids dance and sing and play music (as much as toddlers can) but it's more structure than Lily can handle (sitting in circle, marching in a circle, sitting for any length of time...though it is geared directly for her age group and the other kids do great) and it really reminded me where Lily is at, as I watched kids half her age able to follow simple instruction, and kids of every age able to sit on their moms lap (I had to chase Lily the whole time and stop her from taking other kids things and getting into things she shouldn't). They dumped "snow" on the kids (a basket of tissues) and afterwards almost All the kids picked up the tissues and put them back in the basket and Lily went over and dumped it everywhere again. Now reading that it sounds pretty funny actually, but when you are there...it's not. I brought her there because it was a free event and Santa came and I really wanted to see just how she would respond to sitting on Santa's lap.....she didn't care for it to say the least. I also wanted to bring her there to see how she would respond, since I've brought her to a similar environment last september, she was slightly better this time, but not by much. Maybe next year.

We had a playdate at a friends house a couple of days ago. Her friend really tried to engage her and Lily was having none of it. Her friend didn't give up though! She was praising Lily for doing a puzzle, tried tickling her (Lily tried to run away but her friend was gently persistent). She's a few months older than Lily, but to me, seems very advanced for her age. She talks in full sentences and is VERY social. She was picking pretend apples out of a pretend tree and giving us each an apple to eat! It was very cute. She insisted on giving Lily hugs and kisses, which Lily tried to ignore initially, but did eventually except with some direction. It's possible she was having an off day, as I have seen her really engage her friend in the past. It's really hit or miss most of the time. I really think the interaction is good for her. Too bad she's sick half the time!

Tuesday, December 2, 2008

12/2/08

Trouble sleeping...again. It was so nice to have her on some cough medicine that had codeine in it while she was sick because she actually slept through the night every night while she was on it. Now that she's not sick anymore it's back to sleeping difficulties. On a positive note she had a GREAT day yesterday, despite her lack of sleep. She was quite the little chatterbox and talked up a storm the first part of the day using all kinds of words, too many to list actually. Here are a few things she said: Up here (when she was up on the window sill), turtle, car (and actually pointed to one when she said it!), yes, mickey, mommy and many more. She repeated a lot of what I was saying. She talked so much that others were pointing out what she was saying at playgroup and at occupational therapy. On the crummy side of things, after nap she was not able to say things again and she became very upset. Here is some information I found on the net to explain why she has so much trouble with speech. She has apraxia, which I believe (of course) was caused by her vaccinations.

What is apraxia of speech?
Apraxia of speech, also known as verbal apraxia or dyspraxia, is a speech disorder in which a person has trouble saying what he or she wants to say correctly and consistently. It is not due to weakness or paralysis of the speech muscles (the muscles of the face, tongue, and lips). The severity of apraxia of speech can range from mild to severe.

What are the types and causes of apraxia?
There are two main types of speech apraxia: acquired apraxia of speech and developmental apraxia of speech. Acquired apraxia of speech can affect a person at any age, although it most typically occurs in adults. It is caused by damage to the parts of the brain that are involved in speaking, and involves the loss or impairment of existing speech abilities. The disorder may result from a stroke, head injury, tumor, or other illness affecting the brain. Acquired apraxia of speech may occur together with muscle weakness affecting speech production (dysarthria) or language difficulties caused by damage to the nervous system (aphasia).

Developmental apraxia of speech (DAS) occurs in children and is present from birth. It appears to affect more boys than girls. This speech disorder goes by several other names, including developmental verbal apraxia, developmental verbal dyspraxia, articulatory apraxia, and childhood apraxia of speech. DAS is different from what is known as a developmental delay of speech, in which a child follows the "typical" path of speech development but does so more slowly than normal.

The cause or causes of DAS are not yet known. Some scientists believe that DAS is a disorder related to a child's overall language development. Others believe it is a neurological disorder that affects the brain's ability to send the proper signals to move the muscles involved in speech. However, brain imaging and other studies have not found evidence of specific brain lesions or differences in brain structure in children with DAS. Children with DAS often have family members who have a history of communication disorders or learning disabilities. This observation and recent research findings suggest that genetic factors may play a role in the disorder.

What are the symptoms? This is Lily all the way...
People with either form of apraxia of speech may have a number of different speech characteristics, or symptoms. One of the most notable symptoms is difficulty putting sounds and syllables together in the correct order to form words. Longer or more complex words are usually harder to say than shorter or simpler words. People with apraxia of speech also tend to make inconsistent mistakes when speaking. For example, they may say a difficult word correctly but then have trouble repeating it, or they may be able to say a particular sound one day and have trouble with the same sound the next day. People with apraxia of speech often appear to be groping for the right sound or word, and may try saying a word several times before they say it correctly. Another common characteristic of apraxia of speech is the incorrect use of "prosody" -- that is, the varying rhythms, stresses, and inflections of speech that are used to help express meaning.
Children with developmental apraxia of speech generally can understand language much better than they are able to use language to express themselves. Some children with the disorder may also have other problems. These can include other speech problems, such as dysarthria; language problems such as poor vocabulary, incorrect grammar, and difficulty in clearly organizing spoken information; problems with reading, writing, spelling, or math; coordination or "motor-skill" problems; and chewing and swallowing difficulties (Lily has always had problems in this area).
The severity of both acquired and developmental apraxia of speech varies from person to person. Apraxia can be so mild that a person has trouble with very few speech sounds or only has occasional problems pronouncing words with many syllables. In the most severe cases, a person may not be able to communicate effectively with speech, and may need the help of alternative or additional communication methods.

I believe that this will be Lily's biggest hurdle. She is doing so well in other areas. Her social skills are fantastic. She got so excited to see her friends in playgroup yesterday that she nearly knocked one little boy over! She is all about hugs and kisses and really enjoys the company of other kids. Last night she got out her baby dolls and fed them their bottles and pacifiers. She even gave one a big kiss on the lips! She was having so much fun with them that I put them in her crib for her to sleep with and she got so excited like she was having her own little slumber party! Today during speech therapy she actually said "Elephant". Of course most of what she is able to say (especially clearly) is when she doesn't have to consciously try to say it (she wasn't asked to say it). Anthony told me that over the weekend he was hiding under a blanket and she lifted it up and said "Peek". My one-hit-wonder is really progressing!

Thursday, November 27, 2008

11-26-08

Lily is almost over being sick and back to her happy self with the exception of some very bad diaper rash due to the constant diarea caused by the antibiotic. If it's not one thing, it's another!
She's been doing a lot of the whole "being two" thing. By that I mean big temper tantrums and she has perfected her ninja move that makes it virtually impossible to pick her up!

Lily started her occupational therapy this week and has gone twice. She really loves it there. So far they've just been letting her explore and do what appeals to her and have just been getting to know her. They've quickly noticed her stubborn side, lol. One of her speech therapists describes her as "determined", I really like that description, lol. Bringing her to OT so far has been a lot like when I bring her to the gymnastics places. A lot of jumping, climbing, swinging, etc. I'm interested to see how they will use these things to help guide her further.

Since I have added more speech therapists to the mix, things have really moved along for Lily. I really feel that everyone has something to offer and that Lily benefits from multiple influences. She seems to be less distracted outside the home and is more responsive. I enjoy the therapist that comes to the home because she is wonderful at giving me many great suggestions of things I can do with Lily. Unfortunately, Lily has a really hard time during the in-home sessions. She cries and tantrums a lot for one reason or another it seems. She had a really good session yesterday at the speech therapists office. She was very responsive and was able to say a lot of words, or at least a great attempt at them. She also seemed very excited to be there. She ran right into the room and sat right down in her chair. It was good to see her so motivated. It was like she knew what she was there for and was ready to work!

Lily has been watching a dvd that was lent to us and immediately started doing some of the things she was watching! She made it through a whole thing of Simon Says and copied what all the other kids did. She also later pointed at something (I wasn't sure what or that she even knew either) when we went outside and said "what's that?" (they did a lot of that on the dvd). She's still doing her one-time-wonder stuff, but she's doing a lot more of it!

We don't have anymore therapy for the rest of the week, due to the holiday, but it will be nice to be able to have some time off while we are both feeling well. Hopefully we will be able to spend some quality family time and also get in a playdate or two! Lily really misses her friends. She really loves to be around other kids and I'm interested to see how she'll respond to seeing them again.

Friday, November 21, 2008

11-21-08

Lily's been really sick, so again, another week of no therapy. Not really a huge deal, she is still progressing as usual. She has a very bad cold and a sinus infection, but has been doing better since she started her antibiotic on wednesday night. She's also taking some cough medicine that has codeine in it which has really helped her to FINALLY get some much needed sleep.

Lily's been talking a little, but not clearly or consistently. She can say (with help and sound prompting)"up", "mom", "dada", "no" and "moo" (finally :) "open" and "help", but as I said, not clearly, even "no" is such a struggle for her that it doesn't sound quite right, but I am very happy with her accomplishments. She tries so hard and gets so frustrated that it makes my heart ache for her. When you ask her to say something she usually says "bob" and then gets mad that that is what came out and then starts to ramble a bunch of other sounds and starts to cry because she can't say what she wants to. But she is trying!

Lily is starting to point to things she sees, like a plane in the sky. Still no pointing for a request, but she is getting better at following a point. I started Lily on a multivitamin yesterday that a lot of kids on the spectrum use called Super Nu-Thera. I hope it helps her make some of the connections she's lacking. No one likes to watch their child struggle.

Saturday, November 15, 2008

11-15-08

Lily is doing great as usual. I am getting over strep throat, so it's been a rough week, but I'm finally feeling better. Lily continues to make progress everyday. I've been trying to sign less with her, because I really feel like she is using it as a crutch. The other day she was gathering up all of her mickey characters and trying to bring them into the living room. I asked her if she needed help and since her arms were full she actually said "help" instead of signing it, lol, there's no way she'd drop her toys! It didn't come out perfect, but it made me see that signing was good for awhile, but we need to move past that now. It is really VERY difficult for her to speak, she gets very frustrated and prefers to sign rather than try to say the words that she just can't formulate. Anthony finally taught her to say "mom" on request and she said it so slow and forcefully that it really broke my heart that she had to work so hard to say it. I've been giving her any and all praise for trying to say words, even when they come out nothing like the word. She doesn't like to make mistakes, so she won't even try most of the time.

Her speech therapy is going well. We had to cancel a few appointments this past week, due to my being sick, but I've been working with her and she continues to do well. She tries to pick up on the sounds in words that she knows and will repeat those sounds. She use to be able to say the "t" sound. It was one of the sounds she preferred, but she seems to have lost that one and only says "ck" sound for the "t". I did hear her say "tinkerbell" or something like it while she was watching her movie. She's really all about hit or miss, my little one-time-wonder!

She seems to be MUCH less into TV now and more into playing with her toys. She use to consistently try to turn on the tv throughout the day, from the moment she ran out of her room in the morning, but she hasn't lately. Her spinning has stopped for the time being, but she seems to have substituted that for running around in a circle. Her favorite thing to do continues to be lining up toys (though she does spend time playing very appropriately with a lot of her toys). She is very easily frustrated if things do not "stand up" just how she wants them to. Some things fall over easily and it really upsets her. I have to try to take away anything that she is playing with that I know won't "cooperate" and substitute it for other things, but it's hard to do that unless she's not looking.

Lily's attention span is getting better. We played with playdough a couple of days ago for over a half hour!! Unheard of for her. Most of her speech therapy requires that she sit in a chair with a tray (kind of like a high chair) so that's been helping. Also she's been having to sit in the car more for the to/from appointments.

I know I've been saying this alot lately, but Lily's understanding of things is skyrocketing. I'm in awe of some of the directions and requests that I can ask her and she understands and actually does some of it! She never understood simple things before and now it's as if a lightbulb has gone on in some part of her brain. Just being able to give her directions at the playground on how she can climb something or that she can run across the wiggley bridge instead of scooting across on her butt and have her listen and understand is amazing to me. She's been much happier too. I can't imagine living in her world. How hard it must be. It's no wonder she's so much happier, she can understand so much more and communicate better than she ever has been able to. She still doesn't point for a request. Like if she wants something she doesn't get that she can just point to it. I still have to try to figure out why she is crying and what she is after. She has trouble following a point, like if I point to something that she is looking for I have to walk towards it until I'm almost touching it for her to be able to follow my point, but we're working on it.

Wednesday, November 5, 2008

11/5/08

I continue to be amazed at all of Lily's progress! She is now starting to say sounds for things all by herself (after quite a bit of practice). She will say the 'ka" for cookie, if she wants more and she is starting to say mm for mickey and "ck' for duck and several other things. She is starting more spontaneous requests (signing more and also saying mmm along with it). She is actually starting to try to imitate more words now, where as before she wouldn't even try. She said a handful for new words today, not many were clear, but you knew what she was saying.

This morning she did the most amazing thing! I was going through some of her old things and she found an elephant that you pull on the cord and it makes it vibrate. I told her to go show it to daddy and she actually did! She walked up to him and demonstrated how it worked (without giving it to him, which shows she is learning what "show" means).

I was trying to get her out of the tub tonight and she shook her head no. This is something she has rarely done (say no to anything spontaneously), so of course I let her play for a few more minutes :) I'm so excited that she is finally learning that she can express that! She has been doing wonderful with her bedtime routine, actually cuing us in when she is ready for books and also when she is done she goes right over to her crib and tries to climb in! It's been great that she has actually wanted to take baths now, where as before she would cry and run from the bath (usually ok for a bit once she's in, but now she runs to the bath when we tell her it's bath time and loves to play and swim around).

We went to see a doctor in Tampa today who gave us a lesson in the Floor Time approach. I learned SO MUCH today and I am very excited to implement what I learned. Basically we need to play with Lily without asking her questions or giving her direction (commands). This was REALLY hard for me! I get why I've been doing that, it's part of teaching, but I can't make it how she is talked to 24/7, which is what we've been doing without even realizing it. I found it so hard initially but it's been getting much easier and I've been very conscious of how I'm speaking to her and just from the afternoon I could see what a difference it really does make. We're working on engagement with her and trying to get her to attend to activities for longer periods of time. After we have made enough progress in that area, then we'll go back to learn more.

Lily is such a different child now. She has learned, grown and progressed so much despite all the obstacles and challenges that she is faced with. I couldn't be more proud or more convinced that she will lose her diagnosis. I can't wait to bring her back next year for her to be evaluated again! Won't they be so shocked with what they see!

Monday, November 3, 2008

11/3/08

I'm so proud of my little girl! Oh the small things...she learned to nod her head yes! And today we were watching Little Einsteins on TV and they were asking questions and she was shaking her head no and nodding it yes in response. I literally started crying I was so happy! I'm not 100% sure that she gets the whole "yes or no" concept, but she's very close.

I noticed that Lily slept better on the nights that we gave her a clay chelation (metal detox) bath. Since I can only give her those once a week, we've started giving her Epsom salt baths (they also detox) and she has been sleeping better and also has marked improvement in following direction, eye contact, etc. I'm not sure it will last, but I'll take whatever sleep improvement I can get, for however long I can get it!

Last week we saw a new speech therapist that came highly recommended and Lily has greatly improved in her sounds, just from the evaluation! We will be seeing her once a week and I may up it to twice. We also saw a new speech therapist today (through insurance thankfully) and she will see Lily three times a week.

We have an appointment for a Floor Time (play therapy) training on Wednesday. I'm very excited about everything and all the progress that Lily has had. Both new speech therapists have told me that Lily has the basics and the desire for speech and that she has a great foundation to work with. She has several sounds that she can make now on request (so long as you have something to motivate her). She can say the sounds for M, T, P, H, B, OOO and OHH and Ka sound (for Cookie). When I ask her to say "yum' she says "mum", it's very cute.

I have more things in the mix as well, so we'll see how it all pans out!

Wednesday, October 29, 2008

10/29/08

Well Lily hasn't been napping lately......sigh....on the plus side she has been more interactive and seems to be in better spirits (we went through a little rough patch. I'm assuming another growth spurt caused her crankiness). She can do the sign for Duck now, can find her "butt cheeks" (as Anthony calls them) along with most other body parts (we're working on arms and legs), she knows what "smile" means and does so with the most effort I've ever seen, lol.

We're going to be upping her speech therapy through Early Steps (an early intervention service) to three times a week (starting in Dec.). I'm hoping to get her some occupational therapy at a place I visited on Monday. We will also be starting RDI (Relationship Development Intervention) as well as another therapy known as the DIR model or "Floor Time", both kinds of therapies are done by parents at home and are used in your everyday life activities. They basically teach you how to interact productively with your child to help them develop specific skills that they are lacking (but doing it a natural, fun way). I've been doing that kind of thing with Lily all along, but I need lots more ideas on things that will help her with specific needs. It's hard to think up things all the time since she is nonverbal and her gesturing is really not where it should be either.

Autistic children need to be taught many skills that typical children gain naturally. One small example of this would be social referencing. A 12 month old baby is placed on a platform with a "visual cliff", meaning it's set up to look like half the platform is solid and the other has a drop, which is really just clear glass and is perfectly safe, but because the baby can see the cliff, but feel the floor underneath them, they are confused and look to their mother to see her expression to see if it is ok. The test they did showed babies avoid the cliff if the mother looked concerned or nervous but went across the platform if the mother looked content and calm.

There are so many things that moms of typical kids take for granted. Lily has a lot of potential, but needs help in so many areas that come naturally to most other kids. For example she only just learned what "bring me" means, and she doesn't understand the word "want". She rarely points at anything unless you ask her where things are, she doesn't point to things spontaneously to show you things or indicate what she wants. She understands thing much better when you use fewer words (I have a hard time remembering that usually). For example I need to say "Lily, sit down for shoes" instead of "Lily, it's time to put your shoes on so we can go bye-bye. Please sit down right here for mama". She could process the long version, since it's something we do routinely, but it will take her 3 times longer to respond. A different scenario would likely get me ignored.

A friend of mine is on a similar journey to the ride we're on. Her little boy just started making improvements in his eye contact and she is overjoyed! Such small things are missed so much when they are absent from the equation and it is such a thrill when you see your child attain skills you wished they had from the start. You watch other kids and wonder why your child struggles to achieve the same natural things that so many don't give a second thought. I suppose it's what wheelchair bound people may think of from time to time "if only they'd appreciate their ability to walk". We take things for granted in this world and don't see all the true blessings around us. I see what Lily struggles with and it saddens me, but at the same time I know she will get through it and we will all be better for it. Lily is our whole world and she makes our lives worth living. The most awesome gift that we have ever been given. I appreciate the little things all the more, and maybe that's a gift as well.

Thursday, October 23, 2008

10-23/24-08

10/23
Lily hasn't been sleeping, again and I've been busy trying to figure out a plan of action with her as far as therapies go. I was having trouble finding ANYONE who takes our insurance. I know we'll have to pay out some out of pocket expenses, it's expected, but I'm trying to utilize what we DO have first, because realistically, it can be very easy to spend thousands each month on therapy and I have to be somewhat practical. What I've been wanting to do is find someone who can teach me what to do, so I can work with her at home (at least part of the time) and I think I've finally found some help in that department with a wonderful doctor that I met with today (who also directed me to a place that takes my insurance for some other therapy as well, yippie!).

As a mom of a child with autism it is very hard to not try to put everything in one pot and stir it around. By this I mean I want her to have every therapy that I can get for her and put it all into place right now, especially since it feels like we have been stagnant lately and not really making as great of strides as we have in the past (hence the drop in number of updates). The problem with going about things that way, is #1 it can be overwhelming for Lily and #2 it may be hard to descern which therapies are doing the most good. I'm praying that the Lord will direct me to make the right decisions for her. Too many cooks in the kitchen can sometimes be a problem, but at this point I'm just really interested in having dinner and not caring how it gets made.

10/24
Lily has been trying to use her signs more, though it has been a little problematic. Now she signs "more" just when she wants something but can't tell me what! Yesterday she spontaniously handed me her giraffe and then showed me the sign for it (which I had quickly taught her yesterday) so that was neat. She also took the pen out of my hand, handed me her ziplock bag of pompoms and signed "open", so that was great as well! Lily also "sings" now. She has a Princess book that has musical buttons on it and she "sings" along with the music, it is very adorable.

Today we went to the mall play area and she got to play with all of her friends whom she had missed so much! She had an absolute great time and really tried to interact with them. She was clearly so happy to be there and it felt great that she could just run, climb and play. I really want her to have the opportunity to still play with her friends. I'm hoping that everything will get scheduled well enough to allow for enough of a balance for her, that's the goal anyhow. I wish that I didn't have to work weekends, it would give me another couple of days to work with!

Wednesday, October 15, 2008

Lily Turned TWO!

We've had a busy week! Some of my family came into town to visit and celebrate Lily's birthday (which was yesterday). We had a really fun, chaotic time and made some nice memories. Lily really seemed to enjoy spending time with her cousins, her aunts, and also her grandpa (as did I of course!).

We had a family birthday party yesterday, which went great. Lily actually blew out her candles! It was a proud moment for me. She is learning more things (of course) and having fun with all of her new toys (most of them have therapeutic reasons behind them, but she'll never know :0).

She did the most amazing thing yesterday. She was able to follow directions to give her ball to everyone in the family! Rarely has she ever followed the direction for giving anything to anyone. I'm not sure she quite understood what that word meant, but she does now! We've been having "ice cream parties" to enhance her listening and pretend skills. She really seems to like it. I have a lot of things I'm going to be working on with her, now that I have some more supplies (they keep adding up though and I'm running out of room!). We were reading some books the other day and one of them was a "words" book that has the objects with the written word underneath them. There was a picture of a toothbrush, and she leaned in and tried to brush her teeth with it! Then she tried to eat some of the food on the page as well. It was very cute.

Her crib went back up, but her bed tent is still up in her room and is utilized by her quite often. She really loves it and often gives herself kind of a time-out in there when she needs some quiet time. Lily has become quite the climber now and gets into EVERYTHING. She's got two lovely shiners, one on her eye and one on her chin, that make her look like she went a couple of rounds with Mike Tyson. She really craves height and is climbing everything to get it. I'm trying to figure out a way to give her what she craves, in a safe way, but how do you combine "height" and "safety"? Still mulling that one over.

Lily has her co-birthday party with her friends tomorrow at a bounce house place called Pump It Up. Her boyfriend's birthday is only a week after hers so we're celebrating them together! Here's hoping for a hopping good time!!! (I know, I know, that's corny, but it's late and I'm tired!)

Thursday, October 9, 2008

Side Note...

I've gotten some emails from time to time with questions regarding certain aspects of what I write about. I've been writing this as kind of a personal journal for Lily, an organized way for me to document all the information that I know I will need to reference, as well as a way for family and friends to see what we've been up to. I apologize if I haven't elaborated on definitions for things or have used abbreviations. I will try to explain things better, since it has only just dawned on me that it may possibly serve to help someone who may be going through a similar situation. I am very happy that I am able to use this venue to spread the word about autism. :)

Wednesday, October 8, 2008

10-8-08

We've had quite an interesting couple of days. Yesterday I got the bed tent that I ordered in the mail, so we went to pick up a twin mattress and tried Lily in her 'big girl' bed last night. I figured we weren't getting a whole lot of quality sleep anyway. She really did like it and really did her best to try to sleep in it, but she had a very hard time. My original thinking was that she would still have the need to feel "enclosed", hence the bed tent. However what I came to realize is the stability that the bars on the crib provided for her and give her that "grounded" feeling that she craves. She likes to put her legs and feet on the bars and sleep with her back against them as well. She tried like crazy to get those sensations from the tent, but it definately wasn't sturdy for her. Neither one of us slept much (I was with her to help her feel more secure, which worked great for that aspect), so up went the crib again tonight. She was SOOO excited! She immediately wanted inside of it and wouldn't let me get her back out. It was as though she had been without her long lost friend. At bedtime she past out in it immediately. Here's hoping she'll sleep through the night!
I went and checked out an Autism Clinic in St. Pete yesterday. Hopefully Lily will be starting some ABA therapy there soon. We will likely start out with a couple hours twice a week and then go from there.

Monday, October 6, 2008

10-6-08

Well, it's 1am and I am making an attempt at getting Lily back to bed. Someday soon I pray she will turn into a good sleeper!! On the plus side, for the couple of hours that she was up, we practiced some shapes (triangle, circle, square and heart) which she can now identify, as well as learned the signs for please, thankyou, and help (We're also working on a sign for Mickey Mouse). I am pretty confident that she will remember them tomorrow, since we practiced them quite a bit as she was constantly wanting "help" up and down from one of our bar stools. She is doing wonderfully (and still quiet, so I'm off to bed)!

Saturday, October 4, 2008

10-4-08

Lily is saying "Bob" now (she used to say it a long time ago) and saying it when I ask her to (she has a hard time repeating what you want her to, so I'm really happy about that). Anthony watched her play with her stuffed animals in her crib and he said it was totally cute. We're so happy that she is showing pretend play (it's a big deal for her). She has been playing inside some tents that we bought for her last christmas (she didn't care for them then but LOVES them now). I'm hoping that she will transition to a big girl bed easier as she gets used to them. We are going to buy her a twin mattress and just put it on the floor with the bed tent we bought for her.

Lily has been saying a lot more, and babbling all day now, since I started her on the new suppliment. Always nice to see progress. I'm going to check out new services for her this week to see if it might be something that would work for us. She'll start occupational therapy a week from tuesday.

Wednesday, October 1, 2008

10-1-08

So things have been going slower than I would like in regards to getting services in play. Doing the call again and wait again thing now. I guess I shouldn't be surprised, it has taken us 9 months to get as far as we have(an official diagnosis and a little speech therapy)! Just another reason why early intervention is SOOO important! I will make some more phone calls for my "plan B" tomorrow to see what else I can put into play for her. She just started speech twice a week but that's been it. I'm very anxious to get her going with everything, but I've decided to use the "waiting period" to get in a bunch of play dates for her. She enjoys them and they are good for her.

Lily can now "high five" (for some reason she had a hard time with that and would always just clap your hand inbetween hers). She can now "give knuckles", since Daddy has taught her that as well. She can sign "car" now. Her signing is going well, but she definately looses some of the signs if they are not practiced (me too, actually lol).

I've been trying to test her and not give her anything to eat or drink to see if she will make the request. I ultimately end up asking her if she wants a drink, and then she will sign drink but not be interested. She does sign eat if you ask her if she is hungry.

We've been contemplating the "big girl" bed thing, since she has been showing signs that she might topple over and hurt herself trying to climb out. I feel like she still needs the security of her crib so I may just take off the one side and put something next to the crib (it's a little high up because it has a drawer underneath). I dread the transition and will probably put it off for as long as possible, but likely it will happen over the next few weeks.

I've started her on another suppliment today that comes highly recommended and has helped some develope speech (DMG with Folinic Acid and B-12). I will likely start her on more suppliments myself (more vitamin type things), since I am having a hard time with return calls. I'd like to wean Lily off the formula (which we're working on and it is causing her to have less BMs which is making her more cranky) and would feel more comfortable doing so if I knew she was getting her nutrients. No formula would then equal no bottle (after 2 years we are so sick of washing them!) but I want to have her evaluated first so I can ensure she is getting anything and everything that she may be lacking. I still haven't heard anything back from the hair sample that I sent in, I'm hoping I'll get the results back sometime this week.

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.

Saturday, August 30, 2008

8/30/08

Well, just when I think I have Lily's sleep routine down, she switches it up! She has been sleeping odd hours now. We put her to bed tonight at 11pm, since she slept past 6pm which is a result of 2 naps today because she woke up at 5:45am (usually she gets up at 8-8:30am, naps at 1 for 1.5 hours and goes down at 8:30-9). She slept odd hours yesterday as well. I'm hoping it will even back out soon. I also think she may have an ear infection.

She is listening SOO well now (when she wants to of course). Today I asked her to bring me specific books and she did that no problem. Her vocabulary is increasing dramatically as she shows me different objects and continues to "ask" me what things are. She is jumping up and down like a champ now (not just on the trampoline, and it's the cutest thing ever!). She has mastered getting in and out of her high chair all by herself and seems so proud. She knows what a hug is now, so we've been bugging her for them almost as often as kisses!

Her behaviors continue to concern me due to a continued increase in frequency, however I am hoping to learn how to curb those to get her needs met in a more productive way.

We had a family dinner/playdate last night at a friends house. We got so excited when we saw her interest in her friend's dolls until we realized she was just collecting them to place in a row, lol. It was still cute. We have been teaching her to wave her finger and say "no no no", though she waves her finger at appropriate times (when she doesn't want to do something she'll do that sometimes in place of shaking her head,lol) she has only said the words with it once (last night after her friend did it).

Today she repeatedly said "yum" for several mouthfulls of popcorn! She just has been so happy and giggley. I know I've been posting that a lot, but it's such a blessing! There were many, many days that were a struggle. She would just cry so much and I would just spend my days trying to figure out what she wanted (sometimes we'd cry together!). What a difference it has been since she has been able to understand what I am saying and able to communicate her needs to me!

It's been very hard for us to communicate to some of our family just what we've been going through with Lily. I know it's a hard thing to accept. Even harder when you can't see things for yourself when you live so far away. But that doesn't change how things are. It even feels hurtful when you can't turn to those you love for support and understanding. It seems like it may even add additional distance to our relationships. I'm hoping that someday an understanding can be reached and that hurts can be mended. I'd really hate for Lily to miss out on all the love and family bonding that she deserves.

Wednesday, August 27, 2008

8-27-08

Lily's attention span is growing so much that I have been able to take her to restaurants!!! I am THRILLED by this. Yesterday was our anniversary and we went out to eat with Lily in tow and she did great. When we were ready to leave it wasn't the result of HAVING to leave due to Lily being too fussy. She probably would have made it through dessert if we had opted to do that! Being prepared with toys and stuff is important, but before, no amount of preparation would have sufficed. Today she made it through a trip to IHOP without any problems.

Lily's "behaviors" have increased. Her arm over her eyes thing, her scrunching up her face (which I still think is cute), spinning, climbing, lining up her toys, hand flapping, and the new one is putting her finger in her nose. When she seems happy at the time, then I really don't mind most of these behaviors. I'm not sure how much is being a toddler or how much really needs to be redirected. When it makes her happy, why should I do anything? I think it's a legitimate question that I honestly would like an answer to because I don't know what's right or not. The arm over the eyes thing happens mostly when she is overstimulated but also when she in not, so I'm not sure what to make of it. It seems as though it is something that she feels she "has to" do, because it is very difficult to get her to do anything else when she is doing that.

Lily has continued her success with textures, for the most. We play with shaving cream in the bath daily to make sure she doesn't regress. Lily has been able to point to many objects in books now. Her vocabulary is really growing. Though she still isn't saying much, she has really been able to get her point across!

I just can't express enough that her happiness is just off the charts, which of course makes me feel the same way! She is just generally been such a happy little girl and I can't get enough of her giggles!

Monday, August 25, 2008

8-25-08

Lily continues to steadily make progress. Last friday we went to a playgroup for Early Steps (the program she is in that supplies her speech therapy and hopefully more therapies soon to come, but it's a waiting game). It was at a gymnastics place and she adored it. So much for her to run around and climb on, she was in her glory. She FINALLY learned to jump on the trampoline and land on her feet! For the longest time she has been jumping up and landing on her butt, so this was exciting for me :). She has been doing great in the car and is singing so much more now. Daddy says she was great this weekend (while I was at work unfortunately). He would ask her to bring him specific books and she would look around, find it, and bring it to him! For example he asked her to bring him the Curious George book with the Penguin (she has a few Curious George books) and also the Bzzz Bzzz Book (has a bee that Bzzz's on every page) and she was able to identify those! She can now show you where her eyes, nose, and mouth are.

Today we went to playgroup and she did well there, waving bye bye and blowing kisses to everyone. Now when we arrive at someone's home and we are waiting at the door, she routinely starts to wave hello in anticipation. She also knows that she has to knock on the door (and likes to until the door opens, she doesn't like waiting, lol).

When we got home she surprised me with some more new skills. She was able to show me which of her magnets were Mickey, Goofy, Pluto, Donald Duck, and Daisy Duck! She's still having a little trouble with Minnie but how she learned 5 of the characters already is very exciting! She still has some trouble with responding to her name, but I think it's probably to the "normal" toddler point now because if I ask her if she wants a cookie she responds right away, lol.

More and more she is showing me that she is overcoming her difficulties. I still believe that the Chelation we have her on has been the biggest miracle, allowing her to be able to learn all of the things that I have been trying to teach her. For months I worked with her, but it was as though she was trying to see in the dark. Now the light is on and she can see, and it gets clearer every day!!

Thursday, August 21, 2008

8-21-08

Lily had another great day today! She is really following direction quite well and is showing me just how much she is learning. Car rides are amazingly easier. I remember a time when I had to pack a bag full of toys and pass one to her every minute (literally) of the ride to keep her from crying and today she didn't need a thing! She just sang to herself and was looking out the window, looking very peaceful. She gets into her carseat by herself now and seems very proud of herself. Lily is starting to wave "hello" now (in addition to goodbye). She is blowing people "kisses" quite regularly, as she seems to enjoy that.

Tonight she had her first clay bath (another form of chelation). At bedtime she was already seeming to put more sounds together and said something that sounded like
"Dad love Mom" (though I'm not sure that's what she said, I'm happy for the different sounds being put together). She is going to bed so much easier, as she is more aware of her routine now. Usually we do bath, then watch veggie tales while we do lotion, pj's, hair combing and drink a bottle, afterwards we read books, say prayers and then it's bedtime. She use to have a hard time transitioning from the tv to the books and would always want the tv on. Now she is turning the tv off herself and picking out the books she wants to read! Her attention span seems to be getting longer and she is starting to come when I call to her (when she feels like it unfortunately, but I'll take it). Today I asked Lily if she was hungry and would like a snack and she then followed me into the kitchen and went to look into the pantry with me. :)

Yesterday we went to PUMP IT UP (a bounce house place) to play as a family and had so much fun! We are likely going to have her birthday party there. I am addicted to bringing her to places like that because seeing the joy on her face gives me the most awesome feeling! We went down the big slides, went through the obstacle courses and bounced around all over the place.

Today we went over a friend's house and played on a HUGE blow up slide/pool/ with spray guns thingy. Lily had fun playing with her friends and came home exhausted, ate a huge lunch and took an almost 3 hour nap!

Wednesday, August 20, 2008

Why I'm Blogging...

Our Little Lily:

Lily has not had your typical acheivements that most kids have. Lily's motor skills have always been on target, but she's always seemed to lack those natural connections for information that seem to start by or around age one. The idea that objects have names, how to form sounds (she had, then lost after turning one), the meanings of "where"and "what" (just to name a couple). The difference between someone she knows or doesn't. How to point or gester. How to relay her wants. Responding to her name. Copying an action or facial expression. Understanding simple commands like "bring this to Daddy" or "go get your cup". Being able to identify objects or body parts. These, among SO MANY others, are concepts that have been difficult to teach. But with help of Chelation, she has BLOSSOMED!

I wanted to Blog all of her information for a few different reasons. I want to keep track of her outstanding progress, share it with family and friends and use the blog as an outlet to let others know how we are feeling. And also, most importantly, as a testiment to what chelation can do. It has and continues to unlock so many areas of her brain. Unless you see it for yourself it can be hard to believe but this product has been a true miracle for our family. Family and friends that have seen her and seen the difference know and I want for others to know too.

Some Background and History:
I knew Lily was different early on. Very little eye contact or interaction. She seemed like she was in her own world much of the time. But the worst came just after she turned one. She regressed. Gone were the only 3 words she knew (mama dada and baba) and her babble stopped COMPLETELY. All day long she said only one sound..."aaaaaaahhhhhhhh" (irronically, her eye contact improved greatly at this time, a mystery to me).

Early on Lily never had texture problems. She LOVED sand and paint, mashed potatoes, anything messy. She quickly showed trouble with getting ANYTHING on her and would cry and cry if made to touch anything (sand, play dough, grass, most foods, paint, shaving cream, etc.) Lily was never one to respond to her name or much of anything. To get her attention you literally had to be right in front of her face, and even then sometimes she'd look right through you. She started spinning, lining her toys, hand flapping, teeth grinding more than before, doing her "eye thing"as I call it, and generally displaying all the classic signs.

I recognized she was on the spectrum. It took a long time for Anthony to come to grips with it. He wouldn't deny it, but he wouldn't except it until he actually read the signs of autism and realized our daughter matched 12 out of the 14 characteristics on the list he was reading.

At her 15 month checkup her pediatrician recommended she be evaluated since she had shown signs of regression. A friend of mine had talked about a program called Early Steps that does screenings for developemental delay and gave me the name and number of a woman who does them at the hospitals from time to time. I made a phone call. Two weeks went by, no return call. Maybe the woman was on vacation. I called again and left another message. Another week went by, nothing. Then I decided to call a different number for a less direct route, they took my info and said they’d call back. At this point I made her an appointment to a private office and paid out of pocket for her eval. She was found to be “severely” delayed. I knew she was delayed, but I wanted a second opinion. At 17 months the "therapist" told me she should be saying 50 words and that she would need intense therapy that would be expensive and recommended I look for services through Early Steps. I thought that 50 words was a little over the top but I also knew that no words and no sounds = a problem.

Early Steps called me soon after that and I had a “screening” shortly scheduled. After that I think I waited about 6 weeks for the actual eval to be done (6-6-08). I also had her hearing checked, as a formality, I knew it would be fine. After that it about 2-3 weeks before her speech therapy began, which she has 1 hour a week (and goes into an autistic mess during the sessions because they stress her out so bad. She does not regularly react so prominently during regular day to day happenings because I don’t push her, since stress seems to only cause regression in her behavior).

Some Side info: I tried her in a Montessori school part time the third week of July for a few days and her behavior regressed and she actually refused to get out of her crib the fourth morning and cried and cried and would not cooperate with the routine of getting dressed, diaper changed, hair combed etc. Once she realized she wasn’t going to school she was a completely different child. I decided that she is just a little too young for that yet. I thought it was funny that first day I picked her up, the teacher said to me, “We think she can’t hear”.

I have done a lot of reading and research on autism (as virtually all parents in this situation do) and I came across a product called Kids Chelat, heavy metal chelator, on the website www.evenbetternow.com.

I believe that Lily’s immunizations/flu shots played a large role in her decline. People can say there is no correlation, but I feel strongly that the toxins they use as preservatives in the injections (however minimal) “triggered” it due to a genetic predisposition in addition to having GI problems, which she has had since birth. Because I felt this, I figured this form of chelation would be a good product to try. Nothing else to do but try to reverse the process, right? I tried it this past May for about a week and she started to say dada again! 7 months with NOTHING, you can imagine how excited Dada was, but she didn't seem to understand "who" dada was. It was only babble, but still exciting. Lily began to be very fussy and stopped eating (not knowing why I stopped the chelation just in case). After about a 5-6 week stretch she was less cranky and her appetite came back. It's hard to know with toddlers what is what, but I came to find out all that was because of a HUGE growth spurt and teething .

I started her back on the Chelation July 5th and I regret I ever stopped giving it to her in the first place! She has excelled in SO MANY WAYS!! Every single day she gets better. I cry tears of joy now instead of sadness (which happened A LOT). She started babbling after just a few days and began saying mama! She went from no babbling (though she did continue to say dada from time to time), to babbling all day with different sounds (yay!) and now says mama and dada regularly.

The following progress occurred during the first month:

Asks for her baba, waves bye bye without any prompting, said "Lion" and "roar", replied "YUM!" to some icecream cake, and has said "all done" when she was finished with her lunch. She is so much more alert and looks at everything (including herself in the mirror which she would not do before) with new curiosity and wonder! She has even been able to show me where her "toes" are (by raising her foot and wiggled her toes!) She now knows "who" dada and mama are. The concept of "where" has been difficult to teach her, but she is starting to understand! I have watched her make faces at herself in the mirror and stick out her tongue! Only parents like me can really appreciate those small things :) and just know how really huge they are. She can now blow a flute and blow bubbles (and understand the word "blow") She has said "hot" a couple of times, once while her bath was being filled up! She has shown more "copying" behaviors (wanting to do what I'm doing). She is starting to follow direction and actually understand me and instead of just crying and me having to figure out what she wants, she has started to try to show me what she wants! She laughs so much more now, an honest, genuine laugh. And she LOOKS at me, right in the eyes and for once there is a connection there. Oh, and she has also FINALLY gotten "stranger anxiety". NEVER before did she know the difference between a stranger or a loved one. She would go to ANYONE and want to be picked up, true strangers that I didn't even know. Now she looks to me to tell her if the person is ok to go to and if she is with someone she doesn't know and I'm not in her direct line of view, she’ll start to cry (though it has been improving). Teeth grinding has stopped completey. She still does her "eye thing" from time to time. All this progress in just one month!!!

The following has been her daily progress since then:
8/7/08
Lily said “Duck” 3x in a row, while pointing to the duck on the mirror (though this was copying what I had just done) Future attempts to say “Duck” were said as “Du”, but with no understanding of what that word correlates with.

8/9/08
Can copy making noise with your hand and mouth as well as with the lower lip.
After getting wet, I put Lily’s hooded robe on and she said “Ha, Ha” and did the sign for hat!

8/11/08
Showed jealousy for the first time at playgroup when another little girl was on my lap, Lily tried to push her off. Others noticed that Lily was more aware of whether or not I was in the room, when she would look for me, spot me, give me a big smile and then come barreling over to give me a hug!

8/12/08
Lily said “Bubble” Lily has been routinely following instructions on sitting down when asked. She was also able to follow some direction for “come here” when bribed with stickers. (Usually a difficult thing for her to pay attention to me, even with a bribe, but I was able to get her to look at me when I asked her to instead of being ignored no matter what I did).

8/13/08
Today Lily said “bubble” for the second time! She is also improving on her nonverbal communication. She wanted me to open a plastic container for her, so she placed both my hands on the container, patted the container twice with her hand and looked up at me. When I wouldn’t immediately comply (I wanted her to try to open it) she repeated her request in the exact same way! Also during bath time Lily showed no signs of turmoil when presented with shaving cream. On the contrary, she smeared her whole body with it, “painted” the side of the tub using both her hands and feet! This was after smearing her whole body with body paint and finger painting the tub with a multitude of colors! Not one unhappy bone in her body, she couldn’t get messy enough!

8/14/08
Today Lily was pulling at her diaper because she had just filled it. I said, “Did you peepee in your diaper? Come here and let me change your peepees.” She then pulled at her diaper again and said “peepees”. Today she followed direction by lying down every time I asked her to, to change her diaper. I usually have to chase her and she is usually unaccommodating. Her engagement with me really increased today, as she often came up to me and showed interest in whatever I was doing. She is also shaking her head “no” more often and possibly did her own version of “all done” (signing) when she was done eating. Lily was in an outstanding mood today and smiled and laughed most of the day.

8/15/08
Lily laughed so much today! She seems much less frustrated and seems to have a better understanding about the world around her. Part of me feels like her new awareness is happening so quickly that it is causing her to be over stimulated, resulting in her drastic increase in spinning during the past 10 days or so. Redirecting her with that is becoming more difficult. I find that when she gets overly excited she spins and does her hand flapping. It can be going out to a bounce place for her to play, or seeing me return from being away (even if it was only a bathroom break!) Lily had no texture issues today as she assertively played with a bunch of play dough. Without any instruction she actively squished it through her fingers, flattened it, etc. She was having fun! Today she made an attempt at repeating several words (for example, I said “tug of war” and she made an effort to try to say that a few times). She said “bob” maybe 4 different times today, but never in reference to anything that I could make sense of. She is also showing fear (aside from stranger anxiety). When we went to Inflate World she was scared to go down the slide by herself, something that has always been her favorite with no anxiety over. She also did much better in the car today, doing a lot of giggling and singing (rare for the car).
Lily also “asked” me again today to open a container for her!

8/16/08
Lily did SO MUCH today!! I unfortunately missed most of it while I was at work.
Lily wanted her Winnie the Pooh magnets so she got the case and was trying to figure out how to open it. Anthony said “Lily, bring that here and Daddy will open that for you. Come here and let me help you.” So Lily brought it to him and intently watched how he opened it! Also she started to point to things in books today. Mind you she wasn’t able to pick out objects with accuracy (with the exception of one book), she still pointed to the different things in the books! Pointing, yay!! In her Backyardigans book she was able to point to Pablo on every page!!! Lily found her play dough today, open it, brought it to her table and started to flatten it out. Lily has been doing such a great job playing “appropriately” with toys, but not always. Instead of rolling her cars she likes to match them up and put them in a row. She still does a lot of lining things up, but I think she spends almost equal amounts of time lining things and playing appropriately which is a huge improvement. She has also started making a habit of going to her high chair to let us know that she is hungry. She also said “Bubble” again today.

8/18/08
Today I said, "Lily, what is this?"(I was holding a hat) and she looked at me and made the sign for hat! So NOW she is learning "what" and that things have names! She was also able to pick out her goofy magnet several times when asked where goofy was. Also she knows the word "where" now! She can pick out Pablo anywhere, not just in the book, yay! I also told her to turn the TV off today and she went over and turned it off! Also I was able to vacuum without her crying and vacuum RIGHT NEXT TO HER and it didn't phase her a bit!! She also signed for "more" and also said "all done" (though I'm not sure she gets what that means, because she still kept eating). Lily also can point to her eyes when you ask her where her eyes are!

8/19/08
Today was Lily’s “AHA!” Day. We went to the Developmental Pediatrician’s office today and she did VERY well. I never even had to use the emergency toys I had for her! Her attention span is really improving and she is just figuring out SO MUCH. Today I think she realized that ALL objects have names becasue it seemed like she wanted to know the name of everything. She would point to different things or characters as if asking me what they are and started to remember some! She laughed and laughed today and we had so much fun! She didn’t have any tantrums and had much more patience for things. I am so proud of her! She is finally starting to make some serious connections that seem to be triggering more, like a domino effect. She can point to her nose too, though she still needs a little practice. She did FANTASTIC with her shapes sorter and has one almost completely mastered. Instead of trying a shape in every spot to find which one fits, she is able to look, see where the shape goes and just put it in (circle, triangle and square) but she’s still having a little trouble (understandably) with the cross and the star (getting them mixed up) but I’m sure she’ll figure them out soon enough.

On a behavior note: She has been doing this thing with covering her eyes with her arm. She started a couple of weeks ago but it has been increasing in frequency. It's almost as if she does it when spinning is not an immediate availability (she's sitting or laying down). She's also just today, been examining her hands often as well (coincidentally a question I answered "no" to today when asked if she does that).

Now you are caught up for the most part, and I will be logging more of Lily's progress daily. I really feel if she keeps up the progress at this speed that she will be greatly caught up within the next year or two!