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.