A.J. got a bunch of age appropriate quiz cards for her birthday and when we sat down to go through them, she knew the answers all of them. All of them. I don't realize until she does these little tests, just how wide her knowledge base is and how incredible her memory is. She is a brilliant little girl who can't get her words into sentences easily. Her eye contact has been really good recently and I get greedy when she is like this. I want more. I love having that connection with her.
me.
Tuesday, February 26, 2008
Sunday, February 24, 2008
Two Incredible Days
These past two days mark the two most incredible days with Avery since before her regression, they also mark me completely flying off the handle for the first time in my life, and giving a really fun birthday party.
Let me start with Friday night. It was 1:00 am when I was awakened by the first elated "woo" coming from the screened-in front porch of my next door neighbor's house. I was dismayed. They are frequent partiers (about 3 or 4 all night parties a month at least) and I didn't feel like dealing with it tonight. The next hour was filled with more woo's and then thudding music through open windows. A.J. came into our room at about 2:00am and snuggled up with us and somehow fell asleep again. I didn't. I have never called the police on them before, but at 3 something I finally called the police to complain, and at 3:30 I heard them next door. They were all having a good laugh with the officer. Whatever. I was relieved when the music stopped and the yelling and laughing on the front porch seemed to quiet down. I fell asleep then, but was awakened again 10 minutes later when the music started again. I probably could have fallen asleep with only the music with the help of my noise maker, rainforest music, but it was the laughing and yelling and screaming and just loud loud talking, outside, that made it impossible to sleep. All I could think of was how much I had to do in the morning for the kid's birthday party. They had been so excited about it all week. I wanted it to be perfect and I had a huge list of things I had to race through in the morning to get everything ready for 3:00. But on no sleep, it was not going to be easy. I was worried that A.J. would wake up again so I called the police again. This time I said that I didn't know why the party wasn't stopped the last time I called. I guess it was 4 something when the police came out again. I heard the loud guy voice say, "Thank you Officer" After the police left nothing changed. They stayed outside talking loudly and laughing. But then I heard people leaving as they walked to their cars, yelling the ends of their stories to their friends on the front porch as they opened their car doors half way down the street.
I have to admit that by this time I was furious. I was so furious that I had indigestion (I'm such an old lady) and had to walk the floor to keep it at bay. All I could think of was, what kind of people simply ignored the police telling them that they were disturbing the neighbors and that they needed to keep it down.
I thought of when the police were called on me as a college student. I practiced my drums for about 5 hours that day with the windows open. Friends came in out out of the house to play with me, but then the police showed up and told me they had 6 complaints from the neighbors. There was a family that lived next door to me at the time and I suddenly realized I was probably disturbing them, not entertaining them. I was so embarrassed and stopped my drum session immediately and never played with the windows open again and never played for more than 45 minutes at a time...never after 10:00pm at night. So if I as a college student understood this, why couldn't these post college students, or, never college students next door not understand? How could they, after the police coming twice, just ignore the message to stop?
At 5:00am I couldn't take it anymore. I put on my husbands shorts and held them around my waist, I must have looked like a scarecrow, and walked outside to the front yard.
I screamed at them, "It is 5:00 in the morning!"
They kept talking loudly and didn't even look at me.
I screamed, "Listen to me, listen to me" at the top of my voice. They stopped talking and laughing and looked over at me in surprise. I screamed, "It is 5:00 in the morning. You have kept me and my family awake all f..cking night. So shut the f...k up and GO INSIDE. My kids are having a birthday party tomorrow and you have woken them up."(This probably wasn't very compelling at the time but it is what came out) Then I screamed, "Have some f..cking consideration!!!!!" and turned and walked inside.
When I got iside my indigestion, or gaul bladder or whatever the semi-frequent pain in my right shoulder blade is...was gone.
DH said from his pillow, "Well I think you got your point across."
I have to say that I was, and still am a little stunned at my tirade. I have never spoken to anyone like that. In fact, I have never even cussed at anyone before because I always thought that there are more creative words to express expectations and anger. But this, as I said, is what came out. Even now, I am not sure what I think about it. Oh, I have to say that they ignored me and stayed up and talked and laughed for another 20 minutes. I can only think that they must be used to yelling and cussing and so perhaps that didn't even phase them. Also, I think they were stoned, which I'm sure helped cut the shock of the next door neighbor suddenly unleashing a fury upon them. I am sure they only went to bed because the sun was coming up. I am still angry with them but have not figured out what to do next, be it going over and trying to have a real conversation or writing a letter of complaint to the police department and their landlord...or doing nothing. I don't know.
Anyway, the next day DH let me sleep in until 10:00am which was nice, I got 4 and a half hours of sleep. Then he and my dad watched the kids while mom and I first decorated the house to look like a fairy tale castle on the inside, then we raced around town buying 40 helium balloons and food for the party. Back at the house we had one hour to get dressed and make the food so we had friends make the sandwiches, cut into stars and put the chips in bowls and such.
An hour before the party the kids were wild with excitement. A.J. put on a princess dress and some silly silver shoes that her cousin gave her, which had dobs of pink feathers on them with fake gems glued on top of the fluff. She held a fairy wand and clomped around the house trying not to fall off her shoes. She was delighted and it was really funny. Guests started showing up early which was kind of annoying since I had been hoping to take a lightning shower. But, then everyone poured in and I had to turn on my organizing voice and get he first game going. We played, pass the parcel, which is a game I played as a child in England. There were 3 other children with autism at the party so it was not your usual game of pass the parcel. A.J. and her friends just pretty much wanted to hold onto the present once it was passed to them, rather than keep it going round the circle to the music till the music stopped. We managed it though and then I got them all outside for the pinyatta (sp????).
It just all seemed to go well. No one got smacked in the head with the pinyatta stick, no one cried. A,J. and Owen both loved having happy birthday sung to them and blowing out their candles. A.J. didn't even cover her ears which was amazing. My friend made the cakes as their gifts. They were the kid's favorite planets, "Jupiter and Saturn" and so they were balls of chocolate cake with ice cream inside. A.J.'s was GFCF with soy ice cream and Owen's was just plain old cake and ice cream. The cakes were a hit, and in the end, the kid's didn't want to leave when the party was over.
I have to say that the best part was that A.J. and Owen had so much fun, and I had fun and didn't get stressed out. A.J. was so happy and engaged and made tons of eye contact. She did go and get into bed a couple of times, but got out of bed five minutes later and came back to join the party. She put on 3 different costumes and paraded around in them.
I have to go to bed now. I will write about today and why it was so good...tomorrow.
I will quickly add though that I have to not stop probiotics if I want the b12 to do any good. Also, no more peanut butter. I am doing this...and she is doing awesome.
me.
Let me start with Friday night. It was 1:00 am when I was awakened by the first elated "woo" coming from the screened-in front porch of my next door neighbor's house. I was dismayed. They are frequent partiers (about 3 or 4 all night parties a month at least) and I didn't feel like dealing with it tonight. The next hour was filled with more woo's and then thudding music through open windows. A.J. came into our room at about 2:00am and snuggled up with us and somehow fell asleep again. I didn't. I have never called the police on them before, but at 3 something I finally called the police to complain, and at 3:30 I heard them next door. They were all having a good laugh with the officer. Whatever. I was relieved when the music stopped and the yelling and laughing on the front porch seemed to quiet down. I fell asleep then, but was awakened again 10 minutes later when the music started again. I probably could have fallen asleep with only the music with the help of my noise maker, rainforest music, but it was the laughing and yelling and screaming and just loud loud talking, outside, that made it impossible to sleep. All I could think of was how much I had to do in the morning for the kid's birthday party. They had been so excited about it all week. I wanted it to be perfect and I had a huge list of things I had to race through in the morning to get everything ready for 3:00. But on no sleep, it was not going to be easy. I was worried that A.J. would wake up again so I called the police again. This time I said that I didn't know why the party wasn't stopped the last time I called. I guess it was 4 something when the police came out again. I heard the loud guy voice say, "Thank you Officer" After the police left nothing changed. They stayed outside talking loudly and laughing. But then I heard people leaving as they walked to their cars, yelling the ends of their stories to their friends on the front porch as they opened their car doors half way down the street.
I have to admit that by this time I was furious. I was so furious that I had indigestion (I'm such an old lady) and had to walk the floor to keep it at bay. All I could think of was, what kind of people simply ignored the police telling them that they were disturbing the neighbors and that they needed to keep it down.
I thought of when the police were called on me as a college student. I practiced my drums for about 5 hours that day with the windows open. Friends came in out out of the house to play with me, but then the police showed up and told me they had 6 complaints from the neighbors. There was a family that lived next door to me at the time and I suddenly realized I was probably disturbing them, not entertaining them. I was so embarrassed and stopped my drum session immediately and never played with the windows open again and never played for more than 45 minutes at a time...never after 10:00pm at night. So if I as a college student understood this, why couldn't these post college students, or, never college students next door not understand? How could they, after the police coming twice, just ignore the message to stop?
At 5:00am I couldn't take it anymore. I put on my husbands shorts and held them around my waist, I must have looked like a scarecrow, and walked outside to the front yard.
I screamed at them, "It is 5:00 in the morning!"
They kept talking loudly and didn't even look at me.
I screamed, "Listen to me, listen to me" at the top of my voice. They stopped talking and laughing and looked over at me in surprise. I screamed, "It is 5:00 in the morning. You have kept me and my family awake all f..cking night. So shut the f...k up and GO INSIDE. My kids are having a birthday party tomorrow and you have woken them up."(This probably wasn't very compelling at the time but it is what came out) Then I screamed, "Have some f..cking consideration!!!!!" and turned and walked inside.
When I got iside my indigestion, or gaul bladder or whatever the semi-frequent pain in my right shoulder blade is...was gone.
DH said from his pillow, "Well I think you got your point across."
I have to say that I was, and still am a little stunned at my tirade. I have never spoken to anyone like that. In fact, I have never even cussed at anyone before because I always thought that there are more creative words to express expectations and anger. But this, as I said, is what came out. Even now, I am not sure what I think about it. Oh, I have to say that they ignored me and stayed up and talked and laughed for another 20 minutes. I can only think that they must be used to yelling and cussing and so perhaps that didn't even phase them. Also, I think they were stoned, which I'm sure helped cut the shock of the next door neighbor suddenly unleashing a fury upon them. I am sure they only went to bed because the sun was coming up. I am still angry with them but have not figured out what to do next, be it going over and trying to have a real conversation or writing a letter of complaint to the police department and their landlord...or doing nothing. I don't know.
Anyway, the next day DH let me sleep in until 10:00am which was nice, I got 4 and a half hours of sleep. Then he and my dad watched the kids while mom and I first decorated the house to look like a fairy tale castle on the inside, then we raced around town buying 40 helium balloons and food for the party. Back at the house we had one hour to get dressed and make the food so we had friends make the sandwiches, cut into stars and put the chips in bowls and such.
An hour before the party the kids were wild with excitement. A.J. put on a princess dress and some silly silver shoes that her cousin gave her, which had dobs of pink feathers on them with fake gems glued on top of the fluff. She held a fairy wand and clomped around the house trying not to fall off her shoes. She was delighted and it was really funny. Guests started showing up early which was kind of annoying since I had been hoping to take a lightning shower. But, then everyone poured in and I had to turn on my organizing voice and get he first game going. We played, pass the parcel, which is a game I played as a child in England. There were 3 other children with autism at the party so it was not your usual game of pass the parcel. A.J. and her friends just pretty much wanted to hold onto the present once it was passed to them, rather than keep it going round the circle to the music till the music stopped. We managed it though and then I got them all outside for the pinyatta (sp????).
It just all seemed to go well. No one got smacked in the head with the pinyatta stick, no one cried. A,J. and Owen both loved having happy birthday sung to them and blowing out their candles. A.J. didn't even cover her ears which was amazing. My friend made the cakes as their gifts. They were the kid's favorite planets, "Jupiter and Saturn" and so they were balls of chocolate cake with ice cream inside. A.J.'s was GFCF with soy ice cream and Owen's was just plain old cake and ice cream. The cakes were a hit, and in the end, the kid's didn't want to leave when the party was over.
I have to say that the best part was that A.J. and Owen had so much fun, and I had fun and didn't get stressed out. A.J. was so happy and engaged and made tons of eye contact. She did go and get into bed a couple of times, but got out of bed five minutes later and came back to join the party. She put on 3 different costumes and paraded around in them.
I have to go to bed now. I will write about today and why it was so good...tomorrow.
I will quickly add though that I have to not stop probiotics if I want the b12 to do any good. Also, no more peanut butter. I am doing this...and she is doing awesome.
me.
Friday, February 22, 2008
bdays
It is confusing as to what makes A.J. fine some days and loopy on others. I am starting to think that I need to make sure she has her probiotics every day, and I need to not give her peanut butter even though she loves it. She is doing really well again, after having some really bad days. I find it very confusing. It seems so random but I know that it isn't.
We have the kid's birthday party tomorrow. Hm. The invitations turned out really well but I don't know if the party will live up to the invitations. I am wondering how many people will turn up without rsvp...ing. Last year a few kids did which caused a scramble for putting together party favor bags and such. So this year I have some extra and they can put their name on their bag when they walk in this time.
A little girl from our More Than Words, Hannon Program class will be there. She is A.J.'s age and from the videos and what her parent's say about her, she sounds very similar to A.J. I am very curious to meet her.
more later..
me.
We have the kid's birthday party tomorrow. Hm. The invitations turned out really well but I don't know if the party will live up to the invitations. I am wondering how many people will turn up without rsvp...ing. Last year a few kids did which caused a scramble for putting together party favor bags and such. So this year I have some extra and they can put their name on their bag when they walk in this time.
A little girl from our More Than Words, Hannon Program class will be there. She is A.J.'s age and from the videos and what her parent's say about her, she sounds very similar to A.J. I am very curious to meet her.
more later..
me.
Sunday, February 17, 2008
update
So tonight I am dealing with waves of stabbing pain in my right shoulder blade. I think it is my gaul bladder, and if so, it isn't that big of a deal. I just have to ride out the 4 hour storm.
A.J. has been stimming more and although she is much more verbal, she seems to be kind of freaking out about it. She is "acting like a freakazoid" is how I explain it to DH. She sometimes makes funny noises, she screams more and has been tantrumming harder. The verbal stuff is still poring out of her mouth, but she wants her "paci" all the time and has to take frequent brakes to go to her bed to suck on her paci and chill for a few minutes before she goes an plays again (she is only allowed her pacifier in bed.)
We didn't notice the stimming or sensory frustration being so bad last week. I do realize though that it might be a bit much for her, to have a new awareness so maybe that in itself is sensory overload. I don't know. But if that is the case, it should get better after she gets used to the new awareness. We will see. We have a 3 month supply and will use it all. She has been flinching though the past couple of times I gave her the shot. 4 days ago she moved as I was pushing in the b12 and it ended up squirting all over. It is a red color so I thought it was blood for a couple of minutes and then when I looked at the paper towel I realized her blood isn't hot pink, and that must be the b12. Then last night she flinched again. I came back in twice to try and give her time to fall into a deeper sleep. But now that I am putting alchahol on the skin first, it wakes her up a bit. I finally did it even though she flinched and she still didn't wake up all the way. I am pretty squeemish about the whole thing and am looking forwards to being practiced enough for it comes easily.
My stabbing pain seems to be stopping. It hasn't happened in 7 minutes so maybe It has stopped. I hope so!!!
The kids birthdays are coming up. The party is next weekend.
me.
A.J. has been stimming more and although she is much more verbal, she seems to be kind of freaking out about it. She is "acting like a freakazoid" is how I explain it to DH. She sometimes makes funny noises, she screams more and has been tantrumming harder. The verbal stuff is still poring out of her mouth, but she wants her "paci" all the time and has to take frequent brakes to go to her bed to suck on her paci and chill for a few minutes before she goes an plays again (she is only allowed her pacifier in bed.)
We didn't notice the stimming or sensory frustration being so bad last week. I do realize though that it might be a bit much for her, to have a new awareness so maybe that in itself is sensory overload. I don't know. But if that is the case, it should get better after she gets used to the new awareness. We will see. We have a 3 month supply and will use it all. She has been flinching though the past couple of times I gave her the shot. 4 days ago she moved as I was pushing in the b12 and it ended up squirting all over. It is a red color so I thought it was blood for a couple of minutes and then when I looked at the paper towel I realized her blood isn't hot pink, and that must be the b12. Then last night she flinched again. I came back in twice to try and give her time to fall into a deeper sleep. But now that I am putting alchahol on the skin first, it wakes her up a bit. I finally did it even though she flinched and she still didn't wake up all the way. I am pretty squeemish about the whole thing and am looking forwards to being practiced enough for it comes easily.
My stabbing pain seems to be stopping. It hasn't happened in 7 minutes so maybe It has stopped. I hope so!!!
The kids birthdays are coming up. The party is next weekend.
me.
Wednesday, February 13, 2008
Methyl B12 shots
If A.J. isn't just having an amazingly great 2 weeks, and if it isn't some remarkable coincidence, then these shots are the best thing that have happened to us.
The first shot at the Dr.s office didn't seem to make a positive difference. She seemed to mouth objects a lot, like the side effects say.
But after the second shot, the one I gave her, she started to do new things. I'll try and list a few:
Call my attention and after I answer, she will either ask or tell me something. (she does this all day long now, as if she has discovered a new magic power.)
Laugh at the dinner table at something funny (she did this tonight when Owen did something silly)
Ask Grandma questions, "What are you doing Grandma?" Or greet Grandma when she comes in the door
Say bye to people when they say bye to her.
Today at her social skills class, after class they told me that difference between last week's eye contact with a ball throwing and catching game...and this weeks eye contact, was a huge improvement. That was the first thing the SLP said when she came out to get us to watch the last few minutes of class and she was excited about it. After the class I told the SLP that we just started the shots and she said she wanted me to bring her some more information about them.
She had just been running around talking all the time, like something has been unlocked in her. She is kind of a pain in the butt now, like her brother is. She requires answering all day long, when she used to only have and hold conversations and stories with her disney figures and toys. It is wonderful.
I feel like today I got to see glimpses of what maybe she would be like if she didn't have autism. Whether that is from the shots, or these new juice plus vitamins. I don't know. Maybe it is a coincidence. But whatever it is, I am really happy about it. Her fine and gross motar skills don't seem to have improved, but her confidence has, which I hope motivates her to perhaps try and pump on the swings.
me.
The first shot at the Dr.s office didn't seem to make a positive difference. She seemed to mouth objects a lot, like the side effects say.
But after the second shot, the one I gave her, she started to do new things. I'll try and list a few:
Call my attention and after I answer, she will either ask or tell me something. (she does this all day long now, as if she has discovered a new magic power.)
Laugh at the dinner table at something funny (she did this tonight when Owen did something silly)
Ask Grandma questions, "What are you doing Grandma?" Or greet Grandma when she comes in the door
Say bye to people when they say bye to her.
Today at her social skills class, after class they told me that difference between last week's eye contact with a ball throwing and catching game...and this weeks eye contact, was a huge improvement. That was the first thing the SLP said when she came out to get us to watch the last few minutes of class and she was excited about it. After the class I told the SLP that we just started the shots and she said she wanted me to bring her some more information about them.
She had just been running around talking all the time, like something has been unlocked in her. She is kind of a pain in the butt now, like her brother is. She requires answering all day long, when she used to only have and hold conversations and stories with her disney figures and toys. It is wonderful.
I feel like today I got to see glimpses of what maybe she would be like if she didn't have autism. Whether that is from the shots, or these new juice plus vitamins. I don't know. Maybe it is a coincidence. But whatever it is, I am really happy about it. Her fine and gross motar skills don't seem to have improved, but her confidence has, which I hope motivates her to perhaps try and pump on the swings.
me.
Tuesday, February 12, 2008
a library, a shirt and best of all...a hug
This morning I took "O" to the downtown library story hour. When we were there I thought about how we used to often go out in the mornings and I wondered why I stopped. I tried to think of the last time I took him out to something on a morning he does not have preschool, and I realized it was before my sister passed away. I suddenly realized that this was a direct effect of what happened and the impact it had on me and it was very odd. It was odd to have sort of proof that life changed, and that I stopped leaving the house in the morning. I didn't even realize that, until today, when I went out again.
We had a nice morning. We left story time early because "O" got bored and wiggly, then eventually loud. But then we went to visit DH who works downtown, and we saw his new office with a window overlooking main street. He is pretty excited about that. "O" told all of DH's coworkers that his favorite ride at Disney World was the race cars! When someone asked him what he wanted for his birthday next week he said "A big car."
The three of us went out for lunch. I was wearing the big baggy T-shirt I slept in under the sweater I threw on to take A.J. to school this morning. We were rushing so I didn't get dressed, I just pulled on jeans and a zip-up fleece and ran out of the door. I somehow thought it would be OK to go to the library like that. But then in the story hour room, there was a young mom who was completely "done up" and I looked at her in awe. She had a new shirt on with matching violet beads. Her hair was long and blonde, her roots were kept up and her hair freshly blow-dried and the ends curled. She had makeup on. She was with her 1-yr-old and a new baby. Later on in the class she nursed her baby with a cover up shawl over her. I was distracted simply wondering, how on earth did she manage to get ready this morning with two little ones...one of them only a couple of months old. My hair was nicely blow dried from last night thank goodness and my roots are freshly blonde, but like I said, I had on the shirt I SLEPT IN covered up by a fleece and no makeup. So by the time we went to see DH I was feeling a little like, I need to get it together. We all went for a sandwich nearby his office and I enjoyed hanging with my boys for a little while. DH walked "O" and me back to the car and now "O" is napping while I write. I still have this shirt on but do plan to change before we go to pick up A.J.
So today was good. I got out in the morning which hopefully has re-started the morning activities becoming a normal routine.
Let me end on this note...last night A.J. hugged me for the first time since before she had autism. She often kind of bumps into me when she wants a hug. But last night she opened up her arms, walked towards me and said, "oh mommmm" and put her arms around me and squeezed. B12 shots? I don't know. If things keep going like this though, for the next two months, I will be extatic. For now, I don't want to get my hopes up as it is possible that her sudden improvement is a coincidence. Perhaps because I am finally getting it together and life is starting to move again after grief froze everything except time. That could be making her improve. I don't know yet. She sometimes has 2 amazing weeks in a row for no reason. So this upswing will have to last longer than two weeks to have cred. Right now, I am just going to hope.
I'm off to put on a fresh shirt.
me.
We had a nice morning. We left story time early because "O" got bored and wiggly, then eventually loud. But then we went to visit DH who works downtown, and we saw his new office with a window overlooking main street. He is pretty excited about that. "O" told all of DH's coworkers that his favorite ride at Disney World was the race cars! When someone asked him what he wanted for his birthday next week he said "A big car."
The three of us went out for lunch. I was wearing the big baggy T-shirt I slept in under the sweater I threw on to take A.J. to school this morning. We were rushing so I didn't get dressed, I just pulled on jeans and a zip-up fleece and ran out of the door. I somehow thought it would be OK to go to the library like that. But then in the story hour room, there was a young mom who was completely "done up" and I looked at her in awe. She had a new shirt on with matching violet beads. Her hair was long and blonde, her roots were kept up and her hair freshly blow-dried and the ends curled. She had makeup on. She was with her 1-yr-old and a new baby. Later on in the class she nursed her baby with a cover up shawl over her. I was distracted simply wondering, how on earth did she manage to get ready this morning with two little ones...one of them only a couple of months old. My hair was nicely blow dried from last night thank goodness and my roots are freshly blonde, but like I said, I had on the shirt I SLEPT IN covered up by a fleece and no makeup. So by the time we went to see DH I was feeling a little like, I need to get it together. We all went for a sandwich nearby his office and I enjoyed hanging with my boys for a little while. DH walked "O" and me back to the car and now "O" is napping while I write. I still have this shirt on but do plan to change before we go to pick up A.J.
So today was good. I got out in the morning which hopefully has re-started the morning activities becoming a normal routine.
Let me end on this note...last night A.J. hugged me for the first time since before she had autism. She often kind of bumps into me when she wants a hug. But last night she opened up her arms, walked towards me and said, "oh mommmm" and put her arms around me and squeezed. B12 shots? I don't know. If things keep going like this though, for the next two months, I will be extatic. For now, I don't want to get my hopes up as it is possible that her sudden improvement is a coincidence. Perhaps because I am finally getting it together and life is starting to move again after grief froze everything except time. That could be making her improve. I don't know yet. She sometimes has 2 amazing weeks in a row for no reason. So this upswing will have to last longer than two weeks to have cred. Right now, I am just going to hope.
I'm off to put on a fresh shirt.
me.
Sunday, February 10, 2008
Disney World Day...wow!!
We had an amazing day at Disney. What a difference it made to have the pass that made our rented stroller act as a wheelchair...so we got wheelchair access to the rides. On most rides there was no wait with wheel chair access so we went on tons of them. The kids really just wanted to play in Pooh's Playground the whole time. They would have been perfectly happy if we would hav stayed there all day. But A.J.'s favorite ride was the little roller coaster in the Mickey's House Land...or whatever that part it called. I wouldn't go on the roller coaster. I hate roller coasters and this one looked fast enough to be a problem. "O" doesn't like fast stuff either so we happily waited for A.J and DH to go and come back. The kids were so well behaved and so happy. The snacks and sandwiches I packed (my mom's GFCF bread) and the drinks were the perfect amount. The sun shone all day but it didn't get hotter than 75 degrees. I would have loved to have gone back to a hotel and gone back the next day. But it was still good to stay later. We got the kids a balloon each on the way out, not realized after promising them one that they were $10 each!! Anyway, we had a brilliant day, and I even did OK with the drive, I guess. It was better on the way back for some reason, even though it was in the dark and there was more traffic. I think I was just excited about a great day so the drive was fine. I think the best part about the day was when the kids, especially A.J. got to meet Tigger, Pooh and Darby. They are huge Pooh fans and they got to have hugs and get autographs in the little book we got them. Then when we walked away A.J. turned around and looked right at Daby and said, "Bye Darby."
I looked back and Darby had seen and waved bye to A.J. I think that perfect little moment is burned in my brain forever.
I gave A.J. her second B12 shot tonight. She stirred a bit but didn't wake up.
Goodnight.
:)
me.
I looked back and Darby had seen and waved bye to A.J. I think that perfect little moment is burned in my brain forever.
I gave A.J. her second B12 shot tonight. She stirred a bit but didn't wake up.
Goodnight.
:)
me.
Saturday, February 9, 2008
Disney World Tomorrow!!!
I have been trying to decide if the b12 seems to be helping so far. It seems like maybe it has. A.J. talked a lot today. She asked lots of questions and did many new things that she hasn't done before. She drew a picture and wanted to show it to me. She also tried to write the name of her doll on the paper and I have never seen her do that all by herself before.
Then later on at the table she said, "Mom" to get my attention, and she looked right at my face.
"Yes" I looked back at her.
She continued to look me square in the eye, "Can I have more strawberries please"
"Sure!"
I giggled because she has never done that, like that, before and I felt a bit giddy. That tiny exchange was so "normal."
This is our usual conversation:
She blurts out, weather I'm standing there or not, without looking at me,
"I want more strawberries"
"What's the magic word?"
"please"
"OK."
She has been stealing "O's" toys which is a bit annoying and today for the first time I told her to give the toy back to "O". When she wouldn't I had to say, "Do you want to sit in time out?"
I say that all the time to "O" but never to A.J. She turned around and threw the teddy bear down at his feet.
I said,"Now tell him you're sorry"
She said, "Sorry "O"."
She seemed pleased to be doing the same thing/ritual that her brother and I go through daily. Now she is in on the communication spiral galaxy. she made a lot of eye contact today. But she is still lethargic a bit and I want that to get better.
We are going to Disney World tomorrow for the first time (for the kids). I'm pretty nervous, more nervous about the 2 hr drive on the interstate than the park itself. (I am a little damaged from my sisters accident and working through it.) I packed up lunches and snacks and drinks.
We got that letter from CARD (Center for Autism and Related Disabilities) to take to guest services. The letter says that A.J. has autism and anything they can do to make our stay more comfortable would be appreciated. This is supposed to help us get passes so we don't have to wait in lines. DH said he felt a bit guilty about that and I told him that we, and the kids have to deal with the negative affects that autism has on our lives, all the time. We do not have to feel guilty about one positive thing being awarded to us. He agreed. I felt pretty emotional about it for some reason.
We are going to get up at 5:30 am and leave at 6:00 am and drive there. I keep thinking that I am forgetting something. I made a list and put it by the backpack. We are going to rent a stroller when we get there. My sister that passed away went to Disney World a couple of years ago with her husband and their friends with kids. There is a photograph of her sitting in the rented double stroller all crunched up, but she fit in it! This makes me think it is probably big enough for the kids to sleep in. I hope so. I can't get the picture out of my head though, and her big smile. It is a funny picture. I think I put it in the photo montage I made for her funeral. I wish I could be talking to her about our trip tomorrow.
I am hoping that this trip to Disney is going to be one big distraction. I wan to have fun and gain joy through the children's joy. I hope it isn't sensory overload. I hope they have an amazing time. We are going to skip "small world" since I remember wishing as a kid that song would just stop. We are going first to get hats with their names stitched on them...if they still do that. I haven't been in 20 years. Then I'm thinking we will start with the carousel and maybe Dumbo the flying elephants. We will have to work up to Peter Pan but I know they will love it if they are not scared.
It is late, I need to get some sleep...I'm too excited to sleep!
me.
Then later on at the table she said, "Mom" to get my attention, and she looked right at my face.
"Yes" I looked back at her.
She continued to look me square in the eye, "Can I have more strawberries please"
"Sure!"
I giggled because she has never done that, like that, before and I felt a bit giddy. That tiny exchange was so "normal."
This is our usual conversation:
She blurts out, weather I'm standing there or not, without looking at me,
"I want more strawberries"
"What's the magic word?"
"please"
"OK."
She has been stealing "O's" toys which is a bit annoying and today for the first time I told her to give the toy back to "O". When she wouldn't I had to say, "Do you want to sit in time out?"
I say that all the time to "O" but never to A.J. She turned around and threw the teddy bear down at his feet.
I said,"Now tell him you're sorry"
She said, "Sorry "O"."
She seemed pleased to be doing the same thing/ritual that her brother and I go through daily. Now she is in on the communication spiral galaxy. she made a lot of eye contact today. But she is still lethargic a bit and I want that to get better.
We are going to Disney World tomorrow for the first time (for the kids). I'm pretty nervous, more nervous about the 2 hr drive on the interstate than the park itself. (I am a little damaged from my sisters accident and working through it.) I packed up lunches and snacks and drinks.
We got that letter from CARD (Center for Autism and Related Disabilities) to take to guest services. The letter says that A.J. has autism and anything they can do to make our stay more comfortable would be appreciated. This is supposed to help us get passes so we don't have to wait in lines. DH said he felt a bit guilty about that and I told him that we, and the kids have to deal with the negative affects that autism has on our lives, all the time. We do not have to feel guilty about one positive thing being awarded to us. He agreed. I felt pretty emotional about it for some reason.
We are going to get up at 5:30 am and leave at 6:00 am and drive there. I keep thinking that I am forgetting something. I made a list and put it by the backpack. We are going to rent a stroller when we get there. My sister that passed away went to Disney World a couple of years ago with her husband and their friends with kids. There is a photograph of her sitting in the rented double stroller all crunched up, but she fit in it! This makes me think it is probably big enough for the kids to sleep in. I hope so. I can't get the picture out of my head though, and her big smile. It is a funny picture. I think I put it in the photo montage I made for her funeral. I wish I could be talking to her about our trip tomorrow.
I am hoping that this trip to Disney is going to be one big distraction. I wan to have fun and gain joy through the children's joy. I hope it isn't sensory overload. I hope they have an amazing time. We are going to skip "small world" since I remember wishing as a kid that song would just stop. We are going first to get hats with their names stitched on them...if they still do that. I haven't been in 20 years. Then I'm thinking we will start with the carousel and maybe Dumbo the flying elephants. We will have to work up to Peter Pan but I know they will love it if they are not scared.
It is late, I need to get some sleep...I'm too excited to sleep!
me.
Friday, February 8, 2008
first b12 shot
I was pretty nervous so I watched a couple of youtube videos about giving the shots. It looked pretty easy. I took the syringe out of the fridge 15 minutes before I gave it so that it wasn't cold going in. Then when I felt like I was ready and went and got my mom out of her room and asked if she wanted to come and watch. DH was asleep so it was me and mom. I held the syringe like I was shown on the video, like a dart, getting my index finger ready to push the b12 stuff in. A.J. had been asleep for about 45 minutes so I hoped she wouldn't wake up. I read to use the upper outer potion of the buttocks. So I just gave the shot and it was very easy. She didn't even stir.
I marked it on the calendar so I remember when to do the next one. I'm glad that mom watched and saw that it wasn't a big deal so she could do it if she needed to. My Dad came up this evening. He has a job interview tomorrow. If he gets the job he will be able to move here so that he and mom can be together and get a house. I am looking forward to them starting a life here in town, and having their own house.
I hope these shots help A.J. I hope they are the "magic bullet" but I have a feeling they probably aren't. She is such a great "responder" to the other treatments that parents have told me about so I hope hope hope hope that she is to this also. I want her to be happy.
me.
I marked it on the calendar so I remember when to do the next one. I'm glad that mom watched and saw that it wasn't a big deal so she could do it if she needed to. My Dad came up this evening. He has a job interview tomorrow. If he gets the job he will be able to move here so that he and mom can be together and get a house. I am looking forward to them starting a life here in town, and having their own house.
I hope these shots help A.J. I hope they are the "magic bullet" but I have a feeling they probably aren't. She is such a great "responder" to the other treatments that parents have told me about so I hope hope hope hope that she is to this also. I want her to be happy.
me.
Wednesday, February 6, 2008
Social Skills Class
Today was A.J.'s first social skills class. She had speech first, then we, "O" included, had a 45 minute wait before her social skills class began. During that 45 mintues between 4:15 and 5:00pm, the three of us ate a whole bag of rice cakes. There is a large outside area by the therapy office and we waited there, sitting on the benches and munching our rice cakes. It was warm out and the wind was blowing which was kind of exciting because the wind doesn't usually blow in Florida unless it is also storming.
Her social skills class was cute. The other parent and I (and "O") sat in the waiting room during the class. Luckily Sponge Bob was on the TV so "O" was occupied. The other mom's daughter, Corrine, is the same age as A.J. She makes great eye contact but has "sensory issues" and is fearful of many things. Her mom said that when she would get Corrine a new toy, as a baby, that Corrine would cry until they took it away.
Just watching the girls before they went into their class, I was amazed at Corrine's great eye contact and how she could say hi and hold a small conversation with an adult. Although A.J. doesn't do that, she is not afraid of new things, which is a relief.
I talked a little to Corinne's mom, who's name escapes me. I told her about how A.J. suddenly stopped using eye contact between right before her second birthday and right after, and how I didn't realize that until a few nights ago when I watched old videos that I had never watched. I said, that is why mom's think it is shots, because you wonder, what happened during that time? She said she thought it was just a neurological pattern on the disorder. I said that A.J. also regressed and that is what made me think that something "happened" to her. I talked about how A.J. could use the C.D. player before age two, and I called her pediatrician because she couldn't use it anymore, and she was talking less and the list goes on.
We didn't get to finish the conversation because the class was over and we were invited in to see what happened in the class. But I realized during that conversation (Corrine is not on the GFCF diet) that we two autism moms are on the two different sides of what we think autism is and what causes it. It will be interesting to spend time with this mom, although I didn't get the best vibe. I am hoping we can learn from each other. The speech therapist wants our girls to play together, so we will have to get past our differences to make sure the girls get a chance to play together and learn from each other. Avery needs a friend who won't judge her, but hopefully they won't just ignore each other during their playdate, which is highly likely.
So when we went in to the therapy/classroom they showed us what they had been doing and sent the one "typical" girl who serves as the model, out of the room with the SLP (speech therapist) They knocked on the door and everyone said in unison, "come in." They walked in and the SLP said, this is how you greet someone the WRONG way. The girl walked up to the other therapist (who was also her mom) and turned her back away and said, "Hi mom." Then the SLP had her go back outside and come back in again and do it the right way. When she did it the right way, we all clapped.
There were only 4 kids in the class including the "typical" girl and Corrine's little brother...oh yeah, who is also on the spectrum but very high functioning. "O" was there too during those last 15 minutes, watching with us, and he thought it was great. Then the SLP told A.J. it was her turn to go outside and she did, then knocked on the door and we all sang, "Come in!!" She came in with a big smile on her face and looked off to the side of the therapist and said, "Hi mom." Everyone laughed since she called her mom, simply copying the girl before her. But she had to do it again and this time look at the therapist's face. She did it right and everyone clapped and she was very excited. Each kid got a turn and just as they were finishing up, "O" jumped up and said, "My turn!!" So he got a turn too.
The b12 shots come in the mail tomorrow.
Shena.
Her social skills class was cute. The other parent and I (and "O") sat in the waiting room during the class. Luckily Sponge Bob was on the TV so "O" was occupied. The other mom's daughter, Corrine, is the same age as A.J. She makes great eye contact but has "sensory issues" and is fearful of many things. Her mom said that when she would get Corrine a new toy, as a baby, that Corrine would cry until they took it away.
Just watching the girls before they went into their class, I was amazed at Corrine's great eye contact and how she could say hi and hold a small conversation with an adult. Although A.J. doesn't do that, she is not afraid of new things, which is a relief.
I talked a little to Corinne's mom, who's name escapes me. I told her about how A.J. suddenly stopped using eye contact between right before her second birthday and right after, and how I didn't realize that until a few nights ago when I watched old videos that I had never watched. I said, that is why mom's think it is shots, because you wonder, what happened during that time? She said she thought it was just a neurological pattern on the disorder. I said that A.J. also regressed and that is what made me think that something "happened" to her. I talked about how A.J. could use the C.D. player before age two, and I called her pediatrician because she couldn't use it anymore, and she was talking less and the list goes on.
We didn't get to finish the conversation because the class was over and we were invited in to see what happened in the class. But I realized during that conversation (Corrine is not on the GFCF diet) that we two autism moms are on the two different sides of what we think autism is and what causes it. It will be interesting to spend time with this mom, although I didn't get the best vibe. I am hoping we can learn from each other. The speech therapist wants our girls to play together, so we will have to get past our differences to make sure the girls get a chance to play together and learn from each other. Avery needs a friend who won't judge her, but hopefully they won't just ignore each other during their playdate, which is highly likely.
So when we went in to the therapy/classroom they showed us what they had been doing and sent the one "typical" girl who serves as the model, out of the room with the SLP (speech therapist) They knocked on the door and everyone said in unison, "come in." They walked in and the SLP said, this is how you greet someone the WRONG way. The girl walked up to the other therapist (who was also her mom) and turned her back away and said, "Hi mom." Then the SLP had her go back outside and come back in again and do it the right way. When she did it the right way, we all clapped.
There were only 4 kids in the class including the "typical" girl and Corrine's little brother...oh yeah, who is also on the spectrum but very high functioning. "O" was there too during those last 15 minutes, watching with us, and he thought it was great. Then the SLP told A.J. it was her turn to go outside and she did, then knocked on the door and we all sang, "Come in!!" She came in with a big smile on her face and looked off to the side of the therapist and said, "Hi mom." Everyone laughed since she called her mom, simply copying the girl before her. But she had to do it again and this time look at the therapist's face. She did it right and everyone clapped and she was very excited. Each kid got a turn and just as they were finishing up, "O" jumped up and said, "My turn!!" So he got a turn too.
The b12 shots come in the mail tomorrow.
Shena.
Sunday, February 3, 2008
Progressive Pedes
Yesterday we took A.J. to Progressive Pede's, a Dr. that the autism biomed group told us about that is in Jacksonville and does not have the wait list of a DAN! Dr. Also it is covered by insurance because it is a pediatrician's office. The doctor specializes in autism and I was told that they "do everything a DAN! Dr does except for chelation." The Dr. told us about the methyl b12 shots and I said I have been wanting to do them for a while. We gave A.J. one right then and there and the Dr. arranged to have the syringes mailed to my house. I can't believe it. Of course I am already looking for changes in A.J. but no major changes. She is doing very well, but is still lethargic and still doesn't make good eye contact. She has been better at calling out, "mom!" then asking me something after I respond. It is nice to have a "back and forth" with her. That doesn't usually happen.
The Dr pretty much dismissed what the other autism mom told me to do (her advice email is in an earlier post.) She said that the b12 will do what the taurine does and that carnetine is $500 a month and that A.J. doesn't need it. She told me to get something called Juice Plus. But she also had it advertized in her office on a poster and you could purchase it through the little store they had at the practice. So I was glad to go there and get the shots arranged, but I don't know if she perscribed/recommended the Juice Plus because A.J. needs it or because the Dr. gets a kickback from selling it to her patients. I don't know. But we will try it. It is not actually juice. It is gummy bears or chewables. It is made up of dried fruits and vegetables. I mentioned that we don't go overboard with the fruit because the sugar can feed yeast. She said that fruits also have important anti-oxidants in them and to just stay away from starchy fruits like bananas. She said she thought the three lac probiotics will take care of the yeast.
I am still going to look into the carnetine and after doing the b12 for a couple of months, if she is still lethargic I will start putting taurine in her drinks.
I hate playing doctor. D.H. asked this new doctor if she sees a difference in her autistic patients after working with them with these methods encompassing diet intervention, probiotics, vitamins and enzymes. She said yes, definitely, she always sees an improvement. She was sure it would catch on with the general medical community in the next couple of years.
me..P
The Dr pretty much dismissed what the other autism mom told me to do (her advice email is in an earlier post.) She said that the b12 will do what the taurine does and that carnetine is $500 a month and that A.J. doesn't need it. She told me to get something called Juice Plus. But she also had it advertized in her office on a poster and you could purchase it through the little store they had at the practice. So I was glad to go there and get the shots arranged, but I don't know if she perscribed/recommended the Juice Plus because A.J. needs it or because the Dr. gets a kickback from selling it to her patients. I don't know. But we will try it. It is not actually juice. It is gummy bears or chewables. It is made up of dried fruits and vegetables. I mentioned that we don't go overboard with the fruit because the sugar can feed yeast. She said that fruits also have important anti-oxidants in them and to just stay away from starchy fruits like bananas. She said she thought the three lac probiotics will take care of the yeast.
I am still going to look into the carnetine and after doing the b12 for a couple of months, if she is still lethargic I will start putting taurine in her drinks.
I hate playing doctor. D.H. asked this new doctor if she sees a difference in her autistic patients after working with them with these methods encompassing diet intervention, probiotics, vitamins and enzymes. She said yes, definitely, she always sees an improvement. She was sure it would catch on with the general medical community in the next couple of years.
me..P
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