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.
Thursday, November 27, 2008
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.
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.
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!
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!
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!
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