There's a lot to report, but the overwhelming message is that Lily is doing AWESOME! We started the anti fungal medication yesterday (to get the yeast out of her system). We have seen immediate results! We were warned she might turn into a "devil child" while she is detoxing, but so far all we have seen is a HUGE spurt in her speech and overall interaction. Her attention span also seems to be improving. Today she has said all kinds of words, and instead of her usual portion of the word, she is actually able to say more whole words now (not to mention spontaneous words)! This was my hope for this particular medication and it is working!!!
I am very excited and have very high hopes for the immediate future. We started Lily at an additional OT office a couple of weeks ago because I was worried about insurance coverage (we are at our limit for visits this year and the new office cost is covered by the state). I spoke with our insurance and supposedly the new autism bill kicks in after our visits are capped, but they couldn't give me anything in writing to guarantee this, so for right now I'm going to wait and see if they will actually pay. So for now Lily is having OT 5 times a week (4 hours). I really love the office that she has been going to, but this new office seems to offer some great things as well. I think the combination of the two will be wonderful for Lily and she really seems to enjoy going there.
Lily went 12 days seizure free. She had a more intense seizure on 3/22, waking from a nap at about a million degrees, inconsolable for 10-15 minutes followed by her turning ice cold and then her temperature went back to normal. She had a much milder seizure the following day, but none since. I have been really racking my brain to figure out what is the trigger for her. I'm thinking it's exhaustion. She doesn't get enough REM sleep, because she's always up in the night, except following a seizure. When she's having seizures she sleeps better because they wear her out, but then they start again when she's not sleeping as well from not having them. We started giving her melatonin during the day for naps, so she now takes close to 3 hour naps. I think that probably really helped to keep them away. The day she had her seizure she was in the sun playing for 2-3 hours at the pool. I'm thinking that maybe the sun wore her out a little as well, I know everyone there really felt as though they could use a nap!
We started Lily on magnesium, to help her metabolize her B6. It is suppose to help her sleep so I've been giving her some at bedtime but it makes her restless instead. This shouldn't be a big surprise to me, since she had the same reaction when I increased the epsom salt in her bath (it also has magnesium). So now I will alter when she gets that during the day and see if that helps. We tried her MB12 shot again, at half a dose after her 1 week increase of folic acid, but she still did a lot of spinning, so I haven't given her any additional yet.
All in all I must say that Lily is doing so fabulous. She really is losing her diagnosis. Children CAN recover from autism (though not all do), we are just so blessed to be able to watch it happen to our little girl.
Saturday, March 28, 2009
Thursday, March 19, 2009
3-19-09
Lily is really so much fun to be around. Her eye contact and social interaction have improved so much that I would think it would be hard to distinguish her from her peers in those regards. She does however still have her autistic traits. She spaces out and it is hard to get her attention, particularly when we are outside. She is still spinning and doing her "eye thing". Other than those things, speech is her biggest hurdle and really sets her apart from the rest of her peers. It hurts me that she cries to me and can't let me know what's wrong, but she really tries hard to get her wants communicated. I have to keep reminding myself of how far she's come and how fast. The past 6 months have really been a testament to what the Lord can do.
Lily has been bustin' a groove more than ever. I really think dance will be a big part of her life. It's a way for her to be able to express herself, since the words haven't developed yet. Today she did something AWESOME. She made a train out of her blocks and pushed it along the floor and said "Choo Choo". Pretend play just can't be taught, and this is a very big milestone for her.
Lily has been doing pretty well with a fork. We've been doing the "time out" thing. She seems to understand the concept. Yesterday she was in the refrigerator (again) after she had already had a warning (she just likes to stand in there for some reason) and when I started to yell at her and she immediately grabs a pudding and hands it to me, like "I came in here to get this" and so I ask her if she wants to eat it and she says "ssss" (that's her yes). She doesn't even care for pudding that much, it was a left over from the one she didn't want earlier! But she ate half of it anyway, acting as if that was her plan the whole time. (it did get her out of the time out I would have put her in!)
We went for more blood work a few days ago. We'll get all the results on the 6th.
Lily has been bustin' a groove more than ever. I really think dance will be a big part of her life. It's a way for her to be able to express herself, since the words haven't developed yet. Today she did something AWESOME. She made a train out of her blocks and pushed it along the floor and said "Choo Choo". Pretend play just can't be taught, and this is a very big milestone for her.
Lily has been doing pretty well with a fork. We've been doing the "time out" thing. She seems to understand the concept. Yesterday she was in the refrigerator (again) after she had already had a warning (she just likes to stand in there for some reason) and when I started to yell at her and she immediately grabs a pudding and hands it to me, like "I came in here to get this" and so I ask her if she wants to eat it and she says "ssss" (that's her yes). She doesn't even care for pudding that much, it was a left over from the one she didn't want earlier! But she ate half of it anyway, acting as if that was her plan the whole time. (it did get her out of the time out I would have put her in!)
We went for more blood work a few days ago. We'll get all the results on the 6th.
Wednesday, March 11, 2009
3/12/09
Lily has been sick with a cold lately (us too) so her whole schedule is off (not that she really had one, but it's been wackier than usual). I've been contemplating getting her evaluated again to see where she is at since she is doing so well, but I don't think it would satisfy anything except my own curiosity. She hasn't had many seizures lately, thankfully.
We brought her to see the wholistic dr. again on 3/9, and he explained all of her test results from her stool and urine. It was a lot to take in, and I'm still trying to sort things out. They took some blood too and will have to take more next week to satisfy all the testing that is needed. They did find some yeast, so we will be putting her on some antifungal medication, as well as increasing her folinic acid so that she will better tolerate her MB12 shots. I may eventually try the diet with her, but we'll see. My first goal is to get her off the bottle, we'll see how that goes.
She is back to sleeping really crappy now. Last night she was up from about 2:15am to about 5:45am. So she slept from 8:15pm to 2:15 then from 5:45 to 10:45. Total sleep time is ok, but not an ideal situation! She went down for a nap today at 4:45pm so she won't go to bed till late tonight, but at least if she goes to bed late she has a better chance at sleeping through. Yesterday we did no nap (because she got up at 11am after another similar night) and it didn't help her sleep at night. We've tried every schedule there is, nothing seems to work...at least not for long. She was funny last night though. I was soooo trying to sleep and she was doing everything she could to get me to stay up. As I drifted in and out of consciousness she would open my mouth wide with both hands and hold it open with all her might. She would roll on me, climb on me, tickle me, and the best one...kiss me (she woke me up with 5 in a row!). She really does try to fall back asleep, but even with the melatonin it is useless.
She hasn't had many seizures at all this week. We've been home a lot more though I'm not sure that has anything to do with it. Though maybe the lack of seizures has been triggering her horrible sleeping pattern? When she was having them a lot was when she'd sleep well. I guess that makes sense. I have to make her an appointment with a neurologist, and more than likely have a 24hr EEG done. I want to avoid that at all costs. The hour long one we did was the worst hour of my entire life, and I could just not imagine doing that for 24hrs, though if we could capture her sleeping would probably be a good thing.
Anyway, Lily is doing very well with her eye contact and experience sharing. She really seeks out my company. She's sought me out before to help her with things or to use me to get what she wants, but lately she has just been taking me to where she is to just sit with her. She is doing well on the potty, though it'll be a long while before she's potty trained. She amazes me daily with new skills and understanding. The other day she put away all the silverware, all by herself. She has been throwing appropriate things in the garbage (on her own) and can follow two step directions usually fairly easily. She still hasn't lined up any more toys!!! She has shown no interest in any of her figure sets except for her mickey ones that she plays with in her Mickey Club House (which she uses very appropriately). She has been spinning more and dragging her head across the floor(that's a new one) and of course is still looking at her hands a lot. She seems to substitute one action for another. All in all, steady progress.
We brought her to see the wholistic dr. again on 3/9, and he explained all of her test results from her stool and urine. It was a lot to take in, and I'm still trying to sort things out. They took some blood too and will have to take more next week to satisfy all the testing that is needed. They did find some yeast, so we will be putting her on some antifungal medication, as well as increasing her folinic acid so that she will better tolerate her MB12 shots. I may eventually try the diet with her, but we'll see. My first goal is to get her off the bottle, we'll see how that goes.
She is back to sleeping really crappy now. Last night she was up from about 2:15am to about 5:45am. So she slept from 8:15pm to 2:15 then from 5:45 to 10:45. Total sleep time is ok, but not an ideal situation! She went down for a nap today at 4:45pm so she won't go to bed till late tonight, but at least if she goes to bed late she has a better chance at sleeping through. Yesterday we did no nap (because she got up at 11am after another similar night) and it didn't help her sleep at night. We've tried every schedule there is, nothing seems to work...at least not for long. She was funny last night though. I was soooo trying to sleep and she was doing everything she could to get me to stay up. As I drifted in and out of consciousness she would open my mouth wide with both hands and hold it open with all her might. She would roll on me, climb on me, tickle me, and the best one...kiss me (she woke me up with 5 in a row!). She really does try to fall back asleep, but even with the melatonin it is useless.
She hasn't had many seizures at all this week. We've been home a lot more though I'm not sure that has anything to do with it. Though maybe the lack of seizures has been triggering her horrible sleeping pattern? When she was having them a lot was when she'd sleep well. I guess that makes sense. I have to make her an appointment with a neurologist, and more than likely have a 24hr EEG done. I want to avoid that at all costs. The hour long one we did was the worst hour of my entire life, and I could just not imagine doing that for 24hrs, though if we could capture her sleeping would probably be a good thing.
Anyway, Lily is doing very well with her eye contact and experience sharing. She really seeks out my company. She's sought me out before to help her with things or to use me to get what she wants, but lately she has just been taking me to where she is to just sit with her. She is doing well on the potty, though it'll be a long while before she's potty trained. She amazes me daily with new skills and understanding. The other day she put away all the silverware, all by herself. She has been throwing appropriate things in the garbage (on her own) and can follow two step directions usually fairly easily. She still hasn't lined up any more toys!!! She has shown no interest in any of her figure sets except for her mickey ones that she plays with in her Mickey Club House (which she uses very appropriately). She has been spinning more and dragging her head across the floor(that's a new one) and of course is still looking at her hands a lot. She seems to substitute one action for another. All in all, steady progress.
Thursday, March 5, 2009
3/4/09
Lily had a pretty good day today. No nap, but not crabby at all, except for the usual tantrum here and there (as is with any two year old :). I was wondering why she had such a good day with no nap and then it dawned on me...not one seizure today! Then I tried to think of what the difference might have been but I couldn't think of any. She was up from 7:15am to about 8:30pm-ish and was not crabby and ran all over the place the whole day! What a difference from yesterday (she awoke from her nap with a small seizure and was a huge challenge the rest of the day). She either has good days or bad, there doesn't seem to be much of an inbetween. One amazing thing I did notice this week is that she didn't have any interest in lining up her toys! This has been such a staple in her daily routine since as far back as I can ever remember and now, nadda! She has been spinning more, but when she goes to OT or to the park she seems to be ok with that.
Lily can now count to three (sort of). If you say one, she'll say two and a few times has said three but mostly when you ask her to say three she'll say go, lol.
Please keep praying that the seizures go away and don't come back!
Lily can now count to three (sort of). If you say one, she'll say two and a few times has said three but mostly when you ask her to say three she'll say go, lol.
Please keep praying that the seizures go away and don't come back!
Sunday, March 1, 2009
3-1-09
On wed feb 25th Lily had a small seizure while we were in speech therapy. The therapist definitely thought something wasn't right, we both were thinking the same thing. It didn't last long but Lily seemed very tired after therapy (she had just woken up and had slept well the night before) and was out of sorts the rest of the day, wouldn't take a nap and was generally very crabby. It's hard because I really just wanted to bring her home for the day, but of course, I had to bring her to OT.
We started her MB12 shot on thurs. the 26th. Results: waking up for the day at 5am friday, 5:30am sat. and 5:10am sunday morning (today). Napping has been at a minimum, if at all. She wakes up in good spirits, seems more refreshed....it's just FAR too early! But she did sleep through about 9 hours each night. Maybe I'll try to put her down a little later so she sleeps till 6. She has been spinning like crazy, which she hasn't done for a long time. I think she had another seizure on friday and Anthony said she had one today (possibly 2). Due to the spinning we upped her folinic acid to two capsules starting yesterday (that is suppose to help I guess). We are going to stop the shots for the next week and keep on her increased dose of folinic acid and then maybe start again. (writing this info is really just record keeping for me).
I bought her some new books and VOILA, she actually will sit and listen to the story and seems to enjoy my reading to her. This is a complete first for the girl who is a speed page turner. I have actually had to tell her to turn the page some of the time! There really does seem to be something to this theory of new stuff = showing new skills. She doesn't sit and listen to stories with her thousands of other books (and hardly ever did), just the new ones.
We have been having Lily watch The Letter Factory(a DVD that teaches about the alphabet and the sounds that each letter makes) and she has been loving it and participating in a lot of the letter sounds. She's also really getting good at acting out parts of different shows or movies that she loves, especially Madagascar 2. It's really very comical.
We started her MB12 shot on thurs. the 26th. Results: waking up for the day at 5am friday, 5:30am sat. and 5:10am sunday morning (today). Napping has been at a minimum, if at all. She wakes up in good spirits, seems more refreshed....it's just FAR too early! But she did sleep through about 9 hours each night. Maybe I'll try to put her down a little later so she sleeps till 6. She has been spinning like crazy, which she hasn't done for a long time. I think she had another seizure on friday and Anthony said she had one today (possibly 2). Due to the spinning we upped her folinic acid to two capsules starting yesterday (that is suppose to help I guess). We are going to stop the shots for the next week and keep on her increased dose of folinic acid and then maybe start again. (writing this info is really just record keeping for me).
I bought her some new books and VOILA, she actually will sit and listen to the story and seems to enjoy my reading to her. This is a complete first for the girl who is a speed page turner. I have actually had to tell her to turn the page some of the time! There really does seem to be something to this theory of new stuff = showing new skills. She doesn't sit and listen to stories with her thousands of other books (and hardly ever did), just the new ones.
We have been having Lily watch The Letter Factory(a DVD that teaches about the alphabet and the sounds that each letter makes) and she has been loving it and participating in a lot of the letter sounds. She's also really getting good at acting out parts of different shows or movies that she loves, especially Madagascar 2. It's really very comical.
Wednesday, February 25, 2009
2/24/09
Lily has been doing well in all areas (unusual, but true!) She's sleeping and eating better, understands more, follows direction more, is speaking more, etc. Anthony has been working with Lily on "I love you", and always says "Daddy... loves... Lily" (with some gesturing). Well the other day he said "Daddy...loves..." and she pointed to herself and said "Lily". It was very cute.
She's always showing increased interest in the potty and seems to be beginning to understand that she has to take her diaper off to use the potty.
Lily is singing up a storm (she often sounds like someone singing a song who doesn't know the words so you just hear some mumbling) and the other day for the Mickey Mouse Club House theme said the "S" "E" part of m-o-u-s-e.
I bought her some new toys and sure enough, she is playing more appropriately with the new toys than she is her old toys! Go figure. She has been loving the new doll I got her that came with little accessories and she has been feeding it and putting it on the potty and trying to get the baby to play with it's little rattle, etc. I got her the mickey mouse club house and she was using mickey to work the buttons and levers in the house, go down the slide, etc.
She now takes her cod liver oil like a champ. We start her MB12 shots tomorrow. I'm a little nervous about it, I don't want to do it wrong and I don't want it to hurt her. She a pretty tough though and it really is tiny shot. I'm excited to see what improvements she'll make from that, if any. She'll get that every 3 days for a while.
We had another RDI meeting tonight. I'm really learning a lot through that and it keeps me in check a little bit to where Lily should be. I see her so much further ahead now, but it reminds me that she has a whole lot farther to go yet and keeps me motivated to work with her on things. We are being given suggestions on activities to do with her and how to interact to develop her social skills more. It has been really beneficial for us.
She's always showing increased interest in the potty and seems to be beginning to understand that she has to take her diaper off to use the potty.
Lily is singing up a storm (she often sounds like someone singing a song who doesn't know the words so you just hear some mumbling) and the other day for the Mickey Mouse Club House theme said the "S" "E" part of m-o-u-s-e.
I bought her some new toys and sure enough, she is playing more appropriately with the new toys than she is her old toys! Go figure. She has been loving the new doll I got her that came with little accessories and she has been feeding it and putting it on the potty and trying to get the baby to play with it's little rattle, etc. I got her the mickey mouse club house and she was using mickey to work the buttons and levers in the house, go down the slide, etc.
She now takes her cod liver oil like a champ. We start her MB12 shots tomorrow. I'm a little nervous about it, I don't want to do it wrong and I don't want it to hurt her. She a pretty tough though and it really is tiny shot. I'm excited to see what improvements she'll make from that, if any. She'll get that every 3 days for a while.
We had another RDI meeting tonight. I'm really learning a lot through that and it keeps me in check a little bit to where Lily should be. I see her so much further ahead now, but it reminds me that she has a whole lot farther to go yet and keeps me motivated to work with her on things. We are being given suggestions on activities to do with her and how to interact to develop her social skills more. It has been really beneficial for us.
Friday, February 20, 2009
2/20/09
Lily continues to do well, as usual. I've been thinking for awhile that she has seizures from time to time (silent seizures) because there have been times that she blanks off for a minute or two and has a blank stare that I can't change and then just kind of snaps out of it. Since the EEG came back negative I haven't thought much about it, even though I don't think they could have ever gotten an accurate reading while she screamed bloody murder for an hour. A few days ago I think she had a mild one in my arms. She was being very cuddly and as I was holding her her limbs began to jerk. Not hard, but it went on for more than 5 minutes and during that time she was whimpering. Afterward she was very tired and she passed out on the couch (a first for her and completely out of character). There's really nothing that can be done for it, so I'm trying not to concern myself. Meds would reverse all of her progress and would alter her state of being so at this point since it's not bad we'll likely leave things alone. I really wouldn't want to put her through another EEG, it was so traumatic for her. I just pray that if she is having seizures that they stop or at the very least remain mild. It's very common for autistic kids to also have seizure disorders and my aunt is epileptic but I'm hoping everything is just a coincidence. I'll talk to her doctor about it in a couple of weeks, but I don't think there will be any action to take.
A couple of days ago Lily walked into the kitchen, pointed to a banana, and said "nana". After I gave it to her she ate half of it! The ironic thing is I think she just asked for it because she could. She wouldn't touch bananas before that and hasn't since, lol. Shortly afterwards I was trying to feed her some dinner and she tried to push me away and said "oh" (which is her "go"). So her communication is bitter sweet at this point. She's really starting to be a great pointer now and will point to EVERYTHING that she wants.
I've learned/realized from one of her speech therapists lately that as Lily needs new stimulants as her skills grow. She will not play with old toys the same as she will a new toy. For example, she has baby dolls at home that she could care less about, but when she was presented with one in therapy she couldn't get enough of her and was feeding her and cuddling her and putting her to bed, etc. She will play with her toys the same way she always has, but will only use new skills on new toys. This makes sense to me. We've been trying to curb spending so I haven't really bought her any new toys for quite some time I was use to getting her things every week. It's hard not to when you see something that might spark something in your child so that they will learn and grow. We have to engage her in more play with toys but she won't do that with old toys. She's just going to want to continue her patterns. So I'm going to have to get creative and come up with games that we can play together but creativity is certainly not my thing, so it's gonna be hard. I'm open for suggestions if anyone has any, otherwise Walmart will continue to get more and more of my money, lol. We really need to step up her pretend play because it will really help her speech develop faster.
Lily's eye contact has gone down quite a bit. Her speech therapist says that it is because she no longer needs the visual with the audio for processing. I guess it makes sense, but I'm still not happy about it. I've been making her look at me when she has a request but sometimes she will throw a complete tantrum because she doesn't want to. It almost seems really hard for her at times. I need to think of creative ways where she doesn't have a choice while at the same time creating an environment where I don't have to ask her to look at me. Fun stuff.
I'm realizing more and more how much Lily really loves music. She sings, hums, dances (or sways if she's in the car) and tries to play her own music with her instruments. I really need to look into some music therapy for her I think. She's so happy when there's music playing.
Today I went to use the bathroom and Lily followed me so she could go too. It was really cute, but she still doesn't understand that she needs to take off her diaper before sitting down to go.
Lily's been eating a lot more candy lately and really needs some variety, but she's been taking her cod liver oil. I'm so proud of her! I hope I'm not jinxing myself, but she has been sleeping better. Though I had a hard time opening her bedroom door the other morning because she was sleeping propped up against it, lol.
Lily made a clear choice today for the first time (this was a very big deal for the girl who wants it all!). She wanted to bring her toys and her blanket into the office and I told her she could only take one or the other with her. She took a moment, looked at both and decided on her toys. She left her blankie in the car.
A couple of days ago Lily walked into the kitchen, pointed to a banana, and said "nana". After I gave it to her she ate half of it! The ironic thing is I think she just asked for it because she could. She wouldn't touch bananas before that and hasn't since, lol. Shortly afterwards I was trying to feed her some dinner and she tried to push me away and said "oh" (which is her "go"). So her communication is bitter sweet at this point. She's really starting to be a great pointer now and will point to EVERYTHING that she wants.
I've learned/realized from one of her speech therapists lately that as Lily needs new stimulants as her skills grow. She will not play with old toys the same as she will a new toy. For example, she has baby dolls at home that she could care less about, but when she was presented with one in therapy she couldn't get enough of her and was feeding her and cuddling her and putting her to bed, etc. She will play with her toys the same way she always has, but will only use new skills on new toys. This makes sense to me. We've been trying to curb spending so I haven't really bought her any new toys for quite some time I was use to getting her things every week. It's hard not to when you see something that might spark something in your child so that they will learn and grow. We have to engage her in more play with toys but she won't do that with old toys. She's just going to want to continue her patterns. So I'm going to have to get creative and come up with games that we can play together but creativity is certainly not my thing, so it's gonna be hard. I'm open for suggestions if anyone has any, otherwise Walmart will continue to get more and more of my money, lol. We really need to step up her pretend play because it will really help her speech develop faster.
Lily's eye contact has gone down quite a bit. Her speech therapist says that it is because she no longer needs the visual with the audio for processing. I guess it makes sense, but I'm still not happy about it. I've been making her look at me when she has a request but sometimes she will throw a complete tantrum because she doesn't want to. It almost seems really hard for her at times. I need to think of creative ways where she doesn't have a choice while at the same time creating an environment where I don't have to ask her to look at me. Fun stuff.
I'm realizing more and more how much Lily really loves music. She sings, hums, dances (or sways if she's in the car) and tries to play her own music with her instruments. I really need to look into some music therapy for her I think. She's so happy when there's music playing.
Today I went to use the bathroom and Lily followed me so she could go too. It was really cute, but she still doesn't understand that she needs to take off her diaper before sitting down to go.
Lily's been eating a lot more candy lately and really needs some variety, but she's been taking her cod liver oil. I'm so proud of her! I hope I'm not jinxing myself, but she has been sleeping better. Though I had a hard time opening her bedroom door the other morning because she was sleeping propped up against it, lol.
Lily made a clear choice today for the first time (this was a very big deal for the girl who wants it all!). She wanted to bring her toys and her blanket into the office and I told her she could only take one or the other with her. She took a moment, looked at both and decided on her toys. She left her blankie in the car.
Sunday, February 15, 2009
2/15/09
Lots to update, so I will list some random stuff:
Lily is cutting yet another molar...need I say more? She has been eating a lot of Popsicles (and can even say popsi now) and her appetite hasn't been the greatest. She no longer will eat almost anything dairy related (except ice cream). Yogurt and cheese use to be her thing, now she will not have any of it. Funny how toddlers go through these phases. Now she likes poptarts and cereal. We've added Cod Liver Oil to her regiment of supplements. Needless to say she doesn't care for it (it's suppose to be strawberry flavored, but Lily's face tells me otherwise). I've had a hard time giving it to her, but Anthony did pretty well this weekend. I bought some treats for bribing. She's really into lollipops, and I gotta tell you I think she really deserves one after 2 teaspoons of yuck!
We had upped her Epsom salt baths to two cups, but she got really wired after a bath (it's suppose to do the opposite) so we cut it back to 1 cup and she's doing well with that. Her speech is improving, though never as fast as one would like. We are trying for two word phrases now. She is routinely answering yes and no questions, maybe 40% of the time, which is good for her. Now she can go to the fridge and look inside and I can point to things and ask if she wants some of this or that and she can tell me yes or no! She does the same thing with her toy cabinet when she is picking a toy, which is great.
We bought her the new Madagascar movie, which has been a HUGE favorite of hers. She dances around and wanted to watch it over and over. The other day when it was finished she actually said "again" and I asked her if she wanted to watch it again and she said "ya" (that's her new word now). She is getting much better at getting her point across, but still has a hard time when we have to tell her no for anything (complete tantrum). Since she can't ask why, I like to try to explain it to her automatically and it sometimes helps.
Lily has been using the adult potty every day now (1-3 times)! I put her on it if I think she might need to go if I notice her diaper being dry for awhile. Sometimes I'll ask her if she needs to go and she'll go right into the bathroom herself or else tell me no. I'm not pushing too much though. I'm letting her take the lead on that one, I'm just trying to guide her a little. She actually seems proud when she goes and wipes herself too. One time when she was done she made a great attempt at saying "paper" and pointed to the roll. I had to send in her urine and stool samples recently, so this whole potty thing really came in handy.
Lily is starting to be able to follow a point really well and for long distances too. We went to the playground the other day and we were at one side and I asked her where her sippy cup was and she was able to remember where it was and go and get it on the opposite side of the playground.
Lily is starting to label things a little. I tried to give her a banana and she said "nanan". She also was able to name one of the Dora characters in a book and said "Benny", which is huge for her not only because of the labeling, but because she has such a hard time saying "e".
Lily went to her friend's birthday party today. There were pony rides and a petting zoo and she had an absolute awesome time!
Lily is cutting yet another molar...need I say more? She has been eating a lot of Popsicles (and can even say popsi now) and her appetite hasn't been the greatest. She no longer will eat almost anything dairy related (except ice cream). Yogurt and cheese use to be her thing, now she will not have any of it. Funny how toddlers go through these phases. Now she likes poptarts and cereal. We've added Cod Liver Oil to her regiment of supplements. Needless to say she doesn't care for it (it's suppose to be strawberry flavored, but Lily's face tells me otherwise). I've had a hard time giving it to her, but Anthony did pretty well this weekend. I bought some treats for bribing. She's really into lollipops, and I gotta tell you I think she really deserves one after 2 teaspoons of yuck!
We had upped her Epsom salt baths to two cups, but she got really wired after a bath (it's suppose to do the opposite) so we cut it back to 1 cup and she's doing well with that. Her speech is improving, though never as fast as one would like. We are trying for two word phrases now. She is routinely answering yes and no questions, maybe 40% of the time, which is good for her. Now she can go to the fridge and look inside and I can point to things and ask if she wants some of this or that and she can tell me yes or no! She does the same thing with her toy cabinet when she is picking a toy, which is great.
We bought her the new Madagascar movie, which has been a HUGE favorite of hers. She dances around and wanted to watch it over and over. The other day when it was finished she actually said "again" and I asked her if she wanted to watch it again and she said "ya" (that's her new word now). She is getting much better at getting her point across, but still has a hard time when we have to tell her no for anything (complete tantrum). Since she can't ask why, I like to try to explain it to her automatically and it sometimes helps.
Lily has been using the adult potty every day now (1-3 times)! I put her on it if I think she might need to go if I notice her diaper being dry for awhile. Sometimes I'll ask her if she needs to go and she'll go right into the bathroom herself or else tell me no. I'm not pushing too much though. I'm letting her take the lead on that one, I'm just trying to guide her a little. She actually seems proud when she goes and wipes herself too. One time when she was done she made a great attempt at saying "paper" and pointed to the roll. I had to send in her urine and stool samples recently, so this whole potty thing really came in handy.
Lily is starting to be able to follow a point really well and for long distances too. We went to the playground the other day and we were at one side and I asked her where her sippy cup was and she was able to remember where it was and go and get it on the opposite side of the playground.
Lily is starting to label things a little. I tried to give her a banana and she said "nanan". She also was able to name one of the Dora characters in a book and said "Benny", which is huge for her not only because of the labeling, but because she has such a hard time saying "e".
Lily went to her friend's birthday party today. There were pony rides and a petting zoo and she had an absolute awesome time!
Wednesday, February 4, 2009
2/3/09
All things went well with the new doctor we saw. He is really great and I am very comfortable with him and everything that he is recommending thus far. I know he will play a great part in Lily's recovery. We are on a new schedule of things. Increasing some things I'm already doing, as well as adding some new. We go back next month for followup and will get some results of some testing then (I have to send in some "samples"). Also they will do a blood test when we go back.
Lily has been doing fantastic as usual. I'm excited that she will actually follow some direction now (when she feels like it of course). For example, now if I ask her to throw something in the garbage, she actually understands what that means and does it! Tantrums are becoming louder and more energized (I didn't think that they could have even done that!). She is routinely answering "no" (or "oh" as she says usually) in answer to questions. She has a harder time with "yes" but she manages it on occasion (just the "sss" part of course, with a big forced head nod). She is now routinely coming to get me by taking my hand to where she wants me to be, either to just be near her or to help her with something, yay! I've been trying to teach her to use her words (as best she can) instead of crying. The other day she started to cry about something, stopped herself and came and asked me for help. I was overjoyed!
Today she did NOT want to take a nap and took matters into her own hands....and climbed out of the crib. So we took the side off the crib and I bought a bed rail. So far, so good (it's 1am currently). She fell asleep during prayers (thank you melatonin!). She could still wake up, but I am thankful for small favors :)
And here is the grand part of the day.......Lily used the BIG Potty, all by herself!! She was stripped down to nadda in anticipation of a bath. She went into the bathroom and we assumed that she wanted to get in the tub, but instead she raised the lid and climbed up and went! We were surprised she didn't fall in!! It was a very proud moment. I'm just glad that she isn't afraid of the toilet.
Here's hoping she'll sleep through the night! I better get some zzz's while I have the chance.
Lily has been doing fantastic as usual. I'm excited that she will actually follow some direction now (when she feels like it of course). For example, now if I ask her to throw something in the garbage, she actually understands what that means and does it! Tantrums are becoming louder and more energized (I didn't think that they could have even done that!). She is routinely answering "no" (or "oh" as she says usually) in answer to questions. She has a harder time with "yes" but she manages it on occasion (just the "sss" part of course, with a big forced head nod). She is now routinely coming to get me by taking my hand to where she wants me to be, either to just be near her or to help her with something, yay! I've been trying to teach her to use her words (as best she can) instead of crying. The other day she started to cry about something, stopped herself and came and asked me for help. I was overjoyed!
Today she did NOT want to take a nap and took matters into her own hands....and climbed out of the crib. So we took the side off the crib and I bought a bed rail. So far, so good (it's 1am currently). She fell asleep during prayers (thank you melatonin!). She could still wake up, but I am thankful for small favors :)
And here is the grand part of the day.......Lily used the BIG Potty, all by herself!! She was stripped down to nadda in anticipation of a bath. She went into the bathroom and we assumed that she wanted to get in the tub, but instead she raised the lid and climbed up and went! We were surprised she didn't fall in!! It was a very proud moment. I'm just glad that she isn't afraid of the toilet.
Here's hoping she'll sleep through the night! I better get some zzz's while I have the chance.
Thursday, January 29, 2009
1/29/09
Lily's separation anxiety continues to improve greatly. I'm so excited about her new found comprehension. Seems with a little notice and some explanation she does better at most things. I didn't explain a whole lot to her before because she was never able to understand, but finally she is understanding things now! We went to the park and she wanted to bring her blanket to the playground and threw a fit when I told her she couldn't. Then I explained to her that she was going to be playing on the playground and would need two hands to climb and that no other kids had their blankets. She then let out a little whine and put her blanket back in the car HERSELF. I was so thrilled! Today I had to do a similar thing with some toys I wanted her to leave in the car. Tonight, I told her that I didn't know where her CARS puzzles were, so if she wanted to play with them that she would have to find them herself. She went right to the cabinet and found her puzzles. It's so thrilling to me, though a little sad at the same time.
At playgroup today she did very well playing with the other children and listening to me as well. She has also been searching me out whenever she has a problem, which is fairly new.
Tomorrow we have an appt. with Dr. Berger (he's a DAN Dr., which stands for Defeat Autism Now). I'm anticipating a list of supplements to try and also some lab work being done in the near future. I'm excited about all of that because she has responded so well with the supplements that she has been taking so far, so I'm hoping for more of the same!
At playgroup today she did very well playing with the other children and listening to me as well. She has also been searching me out whenever she has a problem, which is fairly new.
Tomorrow we have an appt. with Dr. Berger (he's a DAN Dr., which stands for Defeat Autism Now). I'm anticipating a list of supplements to try and also some lab work being done in the near future. I'm excited about all of that because she has responded so well with the supplements that she has been taking so far, so I'm hoping for more of the same!
Sunday, January 25, 2009
1-25-09
Lily has been doing wonderful. Her speech is continuing to improve, now she is able to do two sounds (one right after the other) with prompting. I’ve learned it helps to break up the word, like AAAA----PUL (for apple) and it makes it easier for her to say. She’s starting to say more without prompting. The other day she was trying to carry a bunch of her characters and couldn’t hold them all so she gave one to me and simultaneously said “ep” which for her means “help”. She has finally started to say “no” sometimes when asked to do something! I must be the only mom around here that gets excited when she tells me “no”, lol. I actually wish she would do it more often so I wouldn’t have to ask so many times!
Anthony taught her the sound “pssstt” so that has been her sound of choice recently. That along with snoring while pretending that she is asleep, lol. She knows what it means to be quiet and when you tell her to be quiet because someone is sleeping she will put her finger up to her mouth and say “shhhh”. She can also make a happy face when you tell her to (she laughs while she does it) and sometimes will give you a sad face when you ask. She can now correlate tired with sleeping, hungry with eating, and thirsty with drinking. Her separation anxiety is still improved, but still needs work.
The battle of wills continues daily, sometimes taking up to 20 minutes to get her from the car to my door (getting her out of the car takes the longest because she tries to crawl into whatever space is farthest from me and get into a ball to make it nearly impossible to pick her up). I try to look at her power struggle issues in a positive way. It means that she has a deeper understanding of who she is and what she wants and her stubbornness has been an asset to her so far. It’s so hard to remember that though! She is getting heavier everyday and it’s difficult to have to physically move her out of areas that she does not belong (on top of the kitchen table or counters, for example) over and over and …..over again. Or places in the store, or running right for that pile of dog poop! The scenarios that my day encompasses are endless!
We’ve recently had a lot of family visiting and that has really been great for Lily. Though she can get over stimulated if too much is going on, she really enjoys interacting with everyone and gets excited to see them.
I recently did a little video taping of Lily for my sister and noticed something that I thought was interesting. She was watching her favorite show (Yo Gabba Gabba) and they were giving directions on how to be a dinosaur (where to put your hands and so on). She was very good at following direction, but towards the end she paused what she was doing to get a closer look at the tv and seemed to have stopped listening and following direction, but had about maybe a 5-8 second delay in finishing what was asked. They had moved on to another clip and she turned around with her arms in position and roared like the T-Rex. I know sometimes it takes her a long time to process information, but this gave me a new perspective on her and how she may operate sometimes.
I bought Lily a set of Cars puzzles (she’s really been into that movie lately). They are 6 piece cardboard puzzles and there are 4 of them. She can now do them all by herself, even when given all the puzzles together. We have been playing more with play dough recently, but she’s still been snacking on it. Not sure how to stop that, as she doesn’t seem to mind the taste.
Anthony taught her the sound “pssstt” so that has been her sound of choice recently. That along with snoring while pretending that she is asleep, lol. She knows what it means to be quiet and when you tell her to be quiet because someone is sleeping she will put her finger up to her mouth and say “shhhh”. She can also make a happy face when you tell her to (she laughs while she does it) and sometimes will give you a sad face when you ask. She can now correlate tired with sleeping, hungry with eating, and thirsty with drinking. Her separation anxiety is still improved, but still needs work.
The battle of wills continues daily, sometimes taking up to 20 minutes to get her from the car to my door (getting her out of the car takes the longest because she tries to crawl into whatever space is farthest from me and get into a ball to make it nearly impossible to pick her up). I try to look at her power struggle issues in a positive way. It means that she has a deeper understanding of who she is and what she wants and her stubbornness has been an asset to her so far. It’s so hard to remember that though! She is getting heavier everyday and it’s difficult to have to physically move her out of areas that she does not belong (on top of the kitchen table or counters, for example) over and over and …..over again. Or places in the store, or running right for that pile of dog poop! The scenarios that my day encompasses are endless!
We’ve recently had a lot of family visiting and that has really been great for Lily. Though she can get over stimulated if too much is going on, she really enjoys interacting with everyone and gets excited to see them.
I recently did a little video taping of Lily for my sister and noticed something that I thought was interesting. She was watching her favorite show (Yo Gabba Gabba) and they were giving directions on how to be a dinosaur (where to put your hands and so on). She was very good at following direction, but towards the end she paused what she was doing to get a closer look at the tv and seemed to have stopped listening and following direction, but had about maybe a 5-8 second delay in finishing what was asked. They had moved on to another clip and she turned around with her arms in position and roared like the T-Rex. I know sometimes it takes her a long time to process information, but this gave me a new perspective on her and how she may operate sometimes.
I bought Lily a set of Cars puzzles (she’s really been into that movie lately). They are 6 piece cardboard puzzles and there are 4 of them. She can now do them all by herself, even when given all the puzzles together. We have been playing more with play dough recently, but she’s still been snacking on it. Not sure how to stop that, as she doesn’t seem to mind the taste.
Tuesday, January 20, 2009
1-20-09
As usual Lily is doing very well! She is still having trouble with her speech, which I believe will be a long road of struggles for her, but over all she is making great progress. She has been tantruming less (but to me it felt like anything would be an improvement, lol). She has been doing much better with her separation anxiety....finally! She seems to do well with a 10 minute good bye notice. She gets upset when I tell her I'll be leaving, we have some hugs and some playtime, then a reminder that I'm leaving, a few more minutes of play and then a sad goodbye...but no tantrums now (or at least for now, she's a day to day wonder, lol). She is starting to grasp the concept of time, which is great.
Lily has been showing improvement in her interactions, her comprehension, and her overall mood has been better. We have increased her dosage of one of her vitamins and it seems to have helped in a lot of areas. I think her teething has stopped for the time being which would account for her being less irritable. Her schedule for therapies has decreased (due to cancellations and the holiday) and she seems to be happier for it, but she didn't have OT today and I could definitely see a major increase in stemming behaviors. She has been spinning a lot and staring at her hands, so I am really looking forward to wednesday when she has OT again and see if that makes a difference.
Her speech therapy is decreasing to 3 times a week now, which I think is fine. I'm thinking about putting her in a mom's morning out program to see how she does playing with other kids without me around for a couple of hours, but I'm still on the fence about it. She has such a hard time communicating that it would be hard for her to be understood. As it is I have a hard time with it, but it would be impossible for someone who doesn't know and understand how she is. I know I'm probably being overprotective....ok...I AM being overprotective, but I can't help it. I watch her struggle to even still understand the concept of yes or no, which is hit or miss most of the time. I watch her frustration of not being able to get her point across, struggling even with gesturing. I just want her happy and I hesitate about putting her in a situation that might increase the anxiety that she so often feels. I know I'll have to do it at some point, but I'm not sure she's (Ok, I'm) ready for that. I'll keep mulling it over and let God decide what's best and at what time. He's done an outstanding job of guiding us so far!
Lily has been showing improvement in her interactions, her comprehension, and her overall mood has been better. We have increased her dosage of one of her vitamins and it seems to have helped in a lot of areas. I think her teething has stopped for the time being which would account for her being less irritable. Her schedule for therapies has decreased (due to cancellations and the holiday) and she seems to be happier for it, but she didn't have OT today and I could definitely see a major increase in stemming behaviors. She has been spinning a lot and staring at her hands, so I am really looking forward to wednesday when she has OT again and see if that makes a difference.
Her speech therapy is decreasing to 3 times a week now, which I think is fine. I'm thinking about putting her in a mom's morning out program to see how she does playing with other kids without me around for a couple of hours, but I'm still on the fence about it. She has such a hard time communicating that it would be hard for her to be understood. As it is I have a hard time with it, but it would be impossible for someone who doesn't know and understand how she is. I know I'm probably being overprotective....ok...I AM being overprotective, but I can't help it. I watch her struggle to even still understand the concept of yes or no, which is hit or miss most of the time. I watch her frustration of not being able to get her point across, struggling even with gesturing. I just want her happy and I hesitate about putting her in a situation that might increase the anxiety that she so often feels. I know I'll have to do it at some point, but I'm not sure she's (Ok, I'm) ready for that. I'll keep mulling it over and let God decide what's best and at what time. He's done an outstanding job of guiding us so far!
Friday, January 9, 2009
1/9/09
Just thought I'd put in a quick blog about Lily's latest few things:
Lily looked at Anthony last night at bed time and said "kisses" (which is what Anthony says to her all the time). She then gave him a big kiss :)
Today on the walk to the car, Lily was running ahead of me and I said stop. Not only did she stop, but she said stop and then I said "let's go to the car" and she said "car".
When we came home I was going to give her a piggy back ride and I said "ready?" and she said, "set, go!!" (very clearly) She's starting to say things after me as well, like if I say "you want me to open this?" Then she says, "open this." (though when she does that it's usually muffled).
Her latest thing is climbing out of her car seat and climbing into the drivers seat instead of getting out of the car. Then I have to walk around to the drivers side again and she just giggles her little head off. Today I asked her to lay down so that I could change her diaper. She climbs up on the couch, lays down, and looks at me with a big smile and starts to giggle, knowing full well that is not where I wanted her to be. She's really been trying to mess with me, and I LOVE IT :)
Lily looked at Anthony last night at bed time and said "kisses" (which is what Anthony says to her all the time). She then gave him a big kiss :)
Today on the walk to the car, Lily was running ahead of me and I said stop. Not only did she stop, but she said stop and then I said "let's go to the car" and she said "car".
When we came home I was going to give her a piggy back ride and I said "ready?" and she said, "set, go!!" (very clearly) She's starting to say things after me as well, like if I say "you want me to open this?" Then she says, "open this." (though when she does that it's usually muffled).
Her latest thing is climbing out of her car seat and climbing into the drivers seat instead of getting out of the car. Then I have to walk around to the drivers side again and she just giggles her little head off. Today I asked her to lay down so that I could change her diaper. She climbs up on the couch, lays down, and looks at me with a big smile and starts to giggle, knowing full well that is not where I wanted her to be. She's really been trying to mess with me, and I LOVE IT :)
Thursday, January 8, 2009
1/8/09
Lily has been verbalizing so much the past couple of days! She really is having a quite a speech spurt :). She has been trying to say words after me very routinely now and has been spontaneously saying sounds and words without any prompting. One of her speech therapists thinks she may have hyperlexia, which is pretty much the opposite of dyslexia. Here is some info I pulled up about it:
What Is Hyperlexia?
Hyperlexia is a syndrome observed in children who have the following characteristics:
A precocious ability to read words, far above what would be expected at their chronological age or an intense fascination with letters or numbers.
Significant difficulty in understanding verbal language
Abnormal social skills, difficulty in socializing and interacting appropriately with people
In addition, some children who are hyperlexic may exhibit the following characteristics:
Learn expressive language in a peculiar way, echo ro memorize the sentence structure without understanding the meaning (echolalia), reverse pronouns
Rarely initiates conversations
An intense need to keep routines, difficulty with transitions, ritualistic behavior
Auditory, olfactory and / or tactile sensitivity
Self-stimulatory behavior
specific, unusual fears
Normal development until 18-24 months, then regression
strong auditory and visual memory
Difficulty answering "Wh--" questions, such as "what," "where," "who," and "why"
Think in concrete and literal terms, difficulty with abstract concepts
Listen selectively, appear to be deaf
Of course not all the characteristics fit, but quite a few do and I do think she can read some words. My nephew, who is on the spectrum, taught himself to read when he was 2.
It's always a plus if your child can read, so I'm hoping she does have some concept of it because it can only help her speech development.
Today in therapy she actually said "pig" when she saw the pig. That was a first for her. On the way there I tried to pass her her harmonica and asked if she wanted to play some music (it's a good warm up for her) and she said NO! (first time for that too) she will usually say "oohh" and only after I prompt her for it. This morning I showed her a wind chime and she perched her lips into an "o" and said "wow".
I talked to her therapist about all of Lily's activities lately, including her clinginess for certain groups of objects and apparently that is a very good thing. For almost a week it was her blankets that she had to have everywhere she went, then it was her cars, then her mickey characters, etc.
Today for the first time in a long time she didn't have the need for that though.
Yesterday my sister babysat Lily and she didn't care at all that I was leaving. Anthony got home before I did though and she had a complete meltdown that it was him instead of me. Luckily I came home shortly after. I'm going to try to leave again tonight and see how it goes.
What Is Hyperlexia?
Hyperlexia is a syndrome observed in children who have the following characteristics:
A precocious ability to read words, far above what would be expected at their chronological age or an intense fascination with letters or numbers.
Significant difficulty in understanding verbal language
Abnormal social skills, difficulty in socializing and interacting appropriately with people
In addition, some children who are hyperlexic may exhibit the following characteristics:
Learn expressive language in a peculiar way, echo ro memorize the sentence structure without understanding the meaning (echolalia), reverse pronouns
Rarely initiates conversations
An intense need to keep routines, difficulty with transitions, ritualistic behavior
Auditory, olfactory and / or tactile sensitivity
Self-stimulatory behavior
specific, unusual fears
Normal development until 18-24 months, then regression
strong auditory and visual memory
Difficulty answering "Wh--" questions, such as "what," "where," "who," and "why"
Think in concrete and literal terms, difficulty with abstract concepts
Listen selectively, appear to be deaf
Of course not all the characteristics fit, but quite a few do and I do think she can read some words. My nephew, who is on the spectrum, taught himself to read when he was 2.
It's always a plus if your child can read, so I'm hoping she does have some concept of it because it can only help her speech development.
Today in therapy she actually said "pig" when she saw the pig. That was a first for her. On the way there I tried to pass her her harmonica and asked if she wanted to play some music (it's a good warm up for her) and she said NO! (first time for that too) she will usually say "oohh" and only after I prompt her for it. This morning I showed her a wind chime and she perched her lips into an "o" and said "wow".
I talked to her therapist about all of Lily's activities lately, including her clinginess for certain groups of objects and apparently that is a very good thing. For almost a week it was her blankets that she had to have everywhere she went, then it was her cars, then her mickey characters, etc.
Today for the first time in a long time she didn't have the need for that though.
Yesterday my sister babysat Lily and she didn't care at all that I was leaving. Anthony got home before I did though and she had a complete meltdown that it was him instead of me. Luckily I came home shortly after. I'm going to try to leave again tonight and see how it goes.
Tuesday, January 6, 2009
1/6/09
Time just seem to pass so quickly these days...anyone else feeling that way?
Well Lily has been out of sorts lately, course it seems that's more the norm now since she started teething her 2nd year molars. I'm not sure how long that whole process takes, but I'm hoping that she will get over it quickly. It must be hard to be in pain and cranky and not be able to explain why or get some help. It has just made her much less patient and more frustrated it seems (understandably). She had a good second part of her day today and was relatively happy.
We went over to a friend's house to play and she had a blast. She was pretty chatty today. I think it really helps for her to be around her peers that are talking. Her spontaneous speech is getting more frequent, not clear, but frequent. She has been continuing to point more, which has made me very happy. Her speech therapist thinks that she is ahead of schedule for kids at her level, which also makes me happy. One of Lily's favorite shows is Yo Gabba Gabba and in the intro they shout that out in a long drawn out "Yoooooooo Gaaabaaaaa Gaaaabbaaa" and Lily has been doing her own variation of that, it's really cute.
I know they say a lot of tv isn't good for kids, but Lily really interacts with the shows in so many ways and it has increased her speech. I think it's actually good for her (to an extent of course). The other day there was a show on that she seldom watches and they had the word "cat" up on the screen (no pictures) and they said "what is this word?" and she said "cat" then they switched the 'c' to a 'b' and asked what that word was and she said "bat". I thought once could have been a fluke thing, but two in a row? Makes me wonder how much she actually knows but can't verbalize. She had never even said bat before!
Tonight I went out to the grocery store before Lily's bedtime and it went so much better than usual. She was sad, but no huge tantrum. I handled it a little differently and I'm hoping that helped so that I can do that routine again. Though it also could of just been a fluke thing as well. I'll try again tomorrow and see how it works.
Well Lily has been out of sorts lately, course it seems that's more the norm now since she started teething her 2nd year molars. I'm not sure how long that whole process takes, but I'm hoping that she will get over it quickly. It must be hard to be in pain and cranky and not be able to explain why or get some help. It has just made her much less patient and more frustrated it seems (understandably). She had a good second part of her day today and was relatively happy.
We went over to a friend's house to play and she had a blast. She was pretty chatty today. I think it really helps for her to be around her peers that are talking. Her spontaneous speech is getting more frequent, not clear, but frequent. She has been continuing to point more, which has made me very happy. Her speech therapist thinks that she is ahead of schedule for kids at her level, which also makes me happy. One of Lily's favorite shows is Yo Gabba Gabba and in the intro they shout that out in a long drawn out "Yoooooooo Gaaabaaaaa Gaaaabbaaa" and Lily has been doing her own variation of that, it's really cute.
I know they say a lot of tv isn't good for kids, but Lily really interacts with the shows in so many ways and it has increased her speech. I think it's actually good for her (to an extent of course). The other day there was a show on that she seldom watches and they had the word "cat" up on the screen (no pictures) and they said "what is this word?" and she said "cat" then they switched the 'c' to a 'b' and asked what that word was and she said "bat". I thought once could have been a fluke thing, but two in a row? Makes me wonder how much she actually knows but can't verbalize. She had never even said bat before!
Tonight I went out to the grocery store before Lily's bedtime and it went so much better than usual. She was sad, but no huge tantrum. I handled it a little differently and I'm hoping that helped so that I can do that routine again. Though it also could of just been a fluke thing as well. I'll try again tomorrow and see how it works.
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!!
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!
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!!
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!
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!
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