Wednesday, February 29, 2012
Those are words I haven't heard yet.
Today speech therapy went awesome! It went so awesome the speech therapist said a few times "who is this child you brought today?" I wasn't sure myself! Then she said something I have not heard yet. She said, "If we have many more days like this, we might just say he doesn't need therapy anymore!" WHAT?! WOW! I never thought I'd hear the day when they would say those words. I know this is just ONE day out of many, but it's a start! I have noticed he has done really well the past couple of weeks. I only hope it continues on this path. :)
Friday, February 24, 2012
Just wanted to add this.
My husband wrote a blog about our experience yesterday as well. I really liked what he wrote about our general struggles with autism. I liked it so much I'm posting it here too.
"As a three-year old who has social and communicative delays, my son cannot always articulate his needs, and many times, he cannot get past something being done in the proper order, according to his 3-year old mind. As his father, I have learned to deal with his autistic behavior and roll with his meltdowns and rituals. Once he has something figured out in his head, nothing may deviate from it. Otherwise, he experiences what my wife and I call a boxing match in his head. Until he can work through the problem in that insanely wired head of his, the world as he knows it comes to an abrupt end. I don’t expect anyone without an autistic child to understand. A good example of our daily meltdowns would be going through doors. He must open the door himself. If it is too heavy to open, he freaks out. If you try to help him, he freaks out. If you try to open the door and walk through first, he freaks out. Oftentimes, it is a meltdown waiting to happen. The irony is that the only way to get him over it is to get him out doing it as much as possible. You don’t lock a socially deficient child away; you get them out amongst people. Even if they melt down, it is something you have to deal with in order to socialize them. The same goes with doors, drink cups, forks, knives, getting into and out of a car seat, taking him to the park, eating dinner, going to sleep, waking up, brushing teeth, reading a story, changing a diaper, and on and on. Everything is a ritual, and everything must be narrated ad nauseam or you risk a meltdown. It is difficult. It is especially difficult in a dynamic environment, where things are happening around you that you have no control over. Interacting with other people, going to restaurants, and even walking through a parking lot brings around a lot of variables that we, as parents of autistic children, just cannot account for. We are especially in tune with our children, but we aren’t perfect. You surely aren’t perfect, so you can’t expect us to be… except we are more aware of our child’s surroundings than 90% of parents with “normal” children are. Still, we cannot always be on guard 100% of the time."
"As a three-year old who has social and communicative delays, my son cannot always articulate his needs, and many times, he cannot get past something being done in the proper order, according to his 3-year old mind. As his father, I have learned to deal with his autistic behavior and roll with his meltdowns and rituals. Once he has something figured out in his head, nothing may deviate from it. Otherwise, he experiences what my wife and I call a boxing match in his head. Until he can work through the problem in that insanely wired head of his, the world as he knows it comes to an abrupt end. I don’t expect anyone without an autistic child to understand. A good example of our daily meltdowns would be going through doors. He must open the door himself. If it is too heavy to open, he freaks out. If you try to help him, he freaks out. If you try to open the door and walk through first, he freaks out. Oftentimes, it is a meltdown waiting to happen. The irony is that the only way to get him over it is to get him out doing it as much as possible. You don’t lock a socially deficient child away; you get them out amongst people. Even if they melt down, it is something you have to deal with in order to socialize them. The same goes with doors, drink cups, forks, knives, getting into and out of a car seat, taking him to the park, eating dinner, going to sleep, waking up, brushing teeth, reading a story, changing a diaper, and on and on. Everything is a ritual, and everything must be narrated ad nauseam or you risk a meltdown. It is difficult. It is especially difficult in a dynamic environment, where things are happening around you that you have no control over. Interacting with other people, going to restaurants, and even walking through a parking lot brings around a lot of variables that we, as parents of autistic children, just cannot account for. We are especially in tune with our children, but we aren’t perfect. You surely aren’t perfect, so you can’t expect us to be… except we are more aware of our child’s surroundings than 90% of parents with “normal” children are. Still, we cannot always be on guard 100% of the time."
Thursday, February 23, 2012
It finally happened.
Tonight we went to a surprise birthday party for a friend of ours at Alfy's pizza. Michael was in a pretty good mood and actually managed to make it through the door without completely freaking out. Once we got inside, he sat down on the waiting area bench and made himself comfortable. He didn't really want to move from there so when we started toward the party room in the back, we thought it might excite him if he could pick his drink and carry it back to the room. This worked for all of 3.5 seconds. He picked his drink and then was carrying it around, spilling it everywhere. Not only was the spilling itself making him upset, but also us trying to help him stop spilling was making it worse. This led to an all out meltdown. I had Rory and 100 other baby items such as blankets, sippy cups, and treat cups in my hands so I took them back to the party room while James tried to deal with Michael. He ended up taking him outside twice. A few minutes later he came back in with him and got all the way to the party room before he was startled by a person welcoming him into the room. He flipped out and screamed all the way back to the door. I followed him out and picked him up. He was screaming loud enough at this point that probably everyone there could hear him a mile away. I went to the furthest table of the restaurant, away from as many people as possible and tried to hug him tightly. This is when the fun began.
There was an older guy, probably in his 60's that was sitting a few tables down. I saw him motioning me to take Michael outside, which I wasn't about ready to do. Michael FLIPS out when we deal with doors. It would be pointless because it would all start up again dealing with getting in the doors. So I just ignored the guy. A few seconds later, he came up to me and told me I needed to take him outside. I said I wasn't going to do that and that my son could not help his screaming. He kept badgering me telling me it was "disrespectful" for me to bring my son out in public if he was going to scream like that. He told me that he belonged in the pit they had there for children (mind you this pit was closer to his table than I was currently sitting!) I wasn't about ready to bring my already overwhelmed son into a pit full of chaos and children. That would not help him calm down one bit. He told me then that if I didn't take my son outside, or to the bathrooms, or as far away from him as I possibly could, that he was going to complain to the management and tell them to make me leave. I looked him straight into the eye and said "DO IT!"
One of the friends from our party asked if he was asking me to leave and I told her that he was and that he went to complain to management. They went back and told James what was going on and that's when he came out to meet the guy. By that time, the guy was talking to the manager or whoever it was that was in charge at the moment. The guy again told us that we were being disrespectful for bringing our child out to a place where he was trying to have a "quiet" evening. He said that "children need to be trained to not cry in public". We told him my son has Autism and he can't control it. He said "I don't even know what that is! You can't use that as an excuse for him to bother me during my dinner!" James said "Well if you don't know what Autism is, you really have no place to be telling me anything on the matter now do you?!" He was probably 2 inches from the guy's face at this point, but surprisingly restraining himself.
I have to hand it to the guy that worked at Alfy's. He was completely understanding and basically told the guy we have every right to be there just as he does. Then another parent from the child pit came up to me and said "Just so you know, none of us mind your child screaming at all". Basically everyone in the establishment was on our side against this one A-hole. I was so riled up and upset by the end of this that I was shaking. Especially because he freaked Michael out so bad that he had cowered into a corner under a candy machine. Who does that to a 3 year old? Even if Michael didn't have Autism, he had no right to treat us that way!
There was an older guy, probably in his 60's that was sitting a few tables down. I saw him motioning me to take Michael outside, which I wasn't about ready to do. Michael FLIPS out when we deal with doors. It would be pointless because it would all start up again dealing with getting in the doors. So I just ignored the guy. A few seconds later, he came up to me and told me I needed to take him outside. I said I wasn't going to do that and that my son could not help his screaming. He kept badgering me telling me it was "disrespectful" for me to bring my son out in public if he was going to scream like that. He told me that he belonged in the pit they had there for children (mind you this pit was closer to his table than I was currently sitting!) I wasn't about ready to bring my already overwhelmed son into a pit full of chaos and children. That would not help him calm down one bit. He told me then that if I didn't take my son outside, or to the bathrooms, or as far away from him as I possibly could, that he was going to complain to the management and tell them to make me leave. I looked him straight into the eye and said "DO IT!"
One of the friends from our party asked if he was asking me to leave and I told her that he was and that he went to complain to management. They went back and told James what was going on and that's when he came out to meet the guy. By that time, the guy was talking to the manager or whoever it was that was in charge at the moment. The guy again told us that we were being disrespectful for bringing our child out to a place where he was trying to have a "quiet" evening. He said that "children need to be trained to not cry in public". We told him my son has Autism and he can't control it. He said "I don't even know what that is! You can't use that as an excuse for him to bother me during my dinner!" James said "Well if you don't know what Autism is, you really have no place to be telling me anything on the matter now do you?!" He was probably 2 inches from the guy's face at this point, but surprisingly restraining himself.
I have to hand it to the guy that worked at Alfy's. He was completely understanding and basically told the guy we have every right to be there just as he does. Then another parent from the child pit came up to me and said "Just so you know, none of us mind your child screaming at all". Basically everyone in the establishment was on our side against this one A-hole. I was so riled up and upset by the end of this that I was shaking. Especially because he freaked Michael out so bad that he had cowered into a corner under a candy machine. Who does that to a 3 year old? Even if Michael didn't have Autism, he had no right to treat us that way!
Saturday, February 4, 2012
Cute
Tonight as I was rocking Michael before bed I asked him how old he was. He told me "I'm 3!" then I asked how old Rory was and he said "She's 2!". He sat there quiet for a second or two then said "What's your number mama?" I was shocked! :) Then he said "What's daddy's number?" That was awesome!
Friday, February 3, 2012
More in depth
Michael has been doing amazing at telling me about his day. Last night I was seeing if he could take it further, and he really blew me away! :) I was getting some extreme detail about his day. I had to work it out of him, but he was doing it! He told me about some story they read in class about kids and a bear. He told me the kids in the story went outside to play and were sad because they fell down. A big bear came and gave them hugs. I have no idea how accurate that was of the actual story, but I still thought it was awesome!
Oh and I have a pic I took a couple weeks ago I meant to post on here. He lined up all the play food, labels out. He lines things up less often, but he will still surprise me here and there with it!
Oh and I have a pic I took a couple weeks ago I meant to post on here. He lined up all the play food, labels out. He lines things up less often, but he will still surprise me here and there with it!
Tuesday, January 24, 2012
DSM-5
Apparently this week or sometime here recently, a study was done on how the DSM5 is going to affect the world of Autism. Basically the study showed that a huge majority of those dx on the spectrum will no longer be considered to have Autism. I had reviewed the changes earlier last year but didn't really go over all the details. This worried me a bit so I took a closer look. In some ways, the new criteria will be *better* for Michael, but there is one criteria that has to be met which I'm worried about. When Michael was dx past July, one of the main reasons he was dx with PDD-NOS and not Autism was due to the fact he *does* make eye contact. However, it's mostly with those close to him. The speech therapist noted in her records that his eye contact is poor.
This, however is the exact requirement and the only one I'm afraid the doc might say he doesn't meet which would completely boot him off the spectrum:
2. Deficits in nonverbal communicative behaviors used for social interaction; ranging from poorly integrated- verbal and nonverbal communication, through abnormalities in eye contact and body-language, or deficits in understanding and use of nonverbal communication, to total lack of facial expression or gestures.
I'm not an expert on nonverbal communication in young kids so other than the eye contact, I don't know what they would be looking for!
Here are the full proposed changes. I'll bold the ones that I KNOW he meets.
It seems a bit insane to me that he would completely lose his dx based on a simple thing as him giving me eye contact. That basically downplays the real meat of his issues!
This, however is the exact requirement and the only one I'm afraid the doc might say he doesn't meet which would completely boot him off the spectrum:
2. Deficits in nonverbal communicative behaviors used for social interaction; ranging from poorly integrated- verbal and nonverbal communication, through abnormalities in eye contact and body-language, or deficits in understanding and use of nonverbal communication, to total lack of facial expression or gestures.
I'm not an expert on nonverbal communication in young kids so other than the eye contact, I don't know what they would be looking for!
Here are the full proposed changes. I'll bold the ones that I KNOW he meets.
Autism Spectrum Disorder
Must meet criteria A, B, C, and D:
A. Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following:
1. Deficits in social-emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction,
2. Deficits in nonverbal communicative behaviors used for social interaction; ranging from poorly integrated- verbal and nonverbal communication, through abnormalities in eye contact and body-language, or deficits in understanding and use of nonverbal communication, to total lack of facial expression or gestures.
3. Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers); ranging from difficulties adjusting behavior to suit different social contexts through difficulties in sharing imaginative play and in making friends to an apparent absence of interest in people
B. Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of the following:
1. Stereotyped or repetitive speech, motor movements, or use of objects; (such as simple motor stereotypies, echolalia, repetitive use of objects, or idiosyncratic phrases).
2. Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change; (such as motoric rituals, insistence on same route or food, repetitive questioning or extreme distress at small changes).
3. Highly restricted, fixated interests that are abnormal in intensity or focus; (such as strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).
4. Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment; (such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects).
C. Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)
D. Symptoms together limit and impair everyday functioning.
It seems a bit insane to me that he would completely lose his dx based on a simple thing as him giving me eye contact. That basically downplays the real meat of his issues!
Thursday, January 5, 2012
Conversation with Michael
Kind of a long video, but I love listening to it. He's engaging in conversation so well now, especially right before he goes to bed.
Wednesday, January 4, 2012
Spontaneous something or other!
Last night I was sitting on the couch when Michael out of nowhere blurted out "We did puzzles!" I knew from the email from his teacher they did a big train puzzle today at school. I asked him who he did the puzzle with and he started to name off some of his classmates. I asked him who was his friend in his class and he named off all his classmates, teacher, and her assistant!
Then today at speech therapy, I told the ST how he did that so she was really trying to engage him in conversation. He was doing so amazingly well. He told her what he got for Christmas, his classmates names, and when she asked if we still had our Christmas tree, he responded "Yeah! It's on the grass!" (lol it IS on the grass still since James tossed it there). Then when we got to the car, he immediately started telling me (super excitedly) that we just did 2 puzzles in ST, "We did the house puzzle and animal puzzle! I did them all!" I asked him which was his favorite and he responded with "The house puzzle!" He has never spontaneously talked about something that happened like that before. He's been getting really excited to tell me about his day while he is being rocked before bed. Now I guess he realized he can tell me these things ANY time, not just right before I lay him down. <3
Then today at speech therapy, I told the ST how he did that so she was really trying to engage him in conversation. He was doing so amazingly well. He told her what he got for Christmas, his classmates names, and when she asked if we still had our Christmas tree, he responded "Yeah! It's on the grass!" (lol it IS on the grass still since James tossed it there). Then when we got to the car, he immediately started telling me (super excitedly) that we just did 2 puzzles in ST, "We did the house puzzle and animal puzzle! I did them all!" I asked him which was his favorite and he responded with "The house puzzle!" He has never spontaneously talked about something that happened like that before. He's been getting really excited to tell me about his day while he is being rocked before bed. Now I guess he realized he can tell me these things ANY time, not just right before I lay him down. <3
Wednesday, December 28, 2011
Michael and Rory
I know you aren't supposed to compare development of any 2 kids because they all develop at their own rate and blah blah blah, but I took this video of Rory last night and it reminded me of one I took of Michael at a similar age. Michael was actually about 2 months older than Rory is now in this video. This was the first time I heard him say "9" and "8". Also, what sounds like "what's that" is just a sound, not him making useful use of words.
Wednesday, December 21, 2011
Complete 180
Wow, speech therapy today was a complete 180 from last week. Last week we had an epic meltdown that ended with me dragging him out to the car and forcing him into his seat. Today he was chipper and cooperative and did pretend play! He even led a lot of the pretending which was super awesome!
It went something like this:
ST: What kind of juice would you like? Apple juice? Milk?
M: Apple juice! (pretends to drink) Mmmmm
ST: Ooh what do we have in our basket?
M: An apple! (pretends to pick it up and eat it)
ST: Oh do we have some sandwiches in the basket?
M: Yeah!
ST: What kind of sandwiches? Tuna? Grilled Cheese?
M: Peanut butter jelly! (pretends to eat)
Me: Oh can I have a sandwich too? What kind do I get?
M: Here mama, peanut butter jelly!
ST: Oh do we have some cookies in there?
M: Yeah! (pretends to eat one)
ST: What kind of cookie is it?
M: Brown!
:)
The ST and I got talking and she was telling me that the student that was sitting in on her session last week (during the epic meltdown) told her she was very impressed how I handled myself and Michael during all that. Then the ST told me that she thinks I'm meant to be Michael's mom because I handle him so well. I really needed to hear that. :') <--- happy tears!
It went something like this:
ST: What kind of juice would you like? Apple juice? Milk?
M: Apple juice! (pretends to drink) Mmmmm
ST: Ooh what do we have in our basket?
M: An apple! (pretends to pick it up and eat it)
ST: Oh do we have some sandwiches in the basket?
M: Yeah!
ST: What kind of sandwiches? Tuna? Grilled Cheese?
M: Peanut butter jelly! (pretends to eat)
Me: Oh can I have a sandwich too? What kind do I get?
M: Here mama, peanut butter jelly!
ST: Oh do we have some cookies in there?
M: Yeah! (pretends to eat one)
ST: What kind of cookie is it?
M: Brown!
:)
The ST and I got talking and she was telling me that the student that was sitting in on her session last week (during the epic meltdown) told her she was very impressed how I handled myself and Michael during all that. Then the ST told me that she thinks I'm meant to be Michael's mom because I handle him so well. I really needed to hear that. :') <--- happy tears!
Visit with Santa!
We've been delaying this ordeal for a couple weeks now after remembering what it was like the past few years. Since Christmas is on Sunday, we figured we better get it done already! We gathered the babies up after getting them dressed in their new Christmas-y outfits and got in the car. Everyone was happy and laughing - phew! Step 1 complete! We got to the mall and did a test drive of our -new to us- stroller. The kids thought it was tons of fun. Step 2 complete! We headed over to Santa and of course he was "out feeding his reindeer". No! The same thing happened last year. So we decided to go grab a bite to eat. This was traveling in dangerous territory...food and new shiny clothes...ahem. Michael only spilled a little bit of soda on his outfit, but nothing that was noticeable. Step 3 complete! We headed back to Santa and there was already a line forming and he wasn't even back yet. So we stood in line for about 20 minutes. Michael just sat in the stroller patiently but Rory was getting impatient and trying to run off into the stores. I chased her around a bit. She was about done with the whole idea. Finally, it was our turn. We decided to ask Santa to stand behind the chair like he did last year and try and have the kids sit on the chair alone. FAIL! Rory was scared out of her mind and would not sit down. She was hopping around, screaming and turning her butt toward the camera. Michael was being so sweet, trying to calm Rory down. After a few seconds of this crazy, we decided to have Santa try and sit on the chair and hold Rory down. Michael did AWESOME and let Santa come sit next to him without any protest. After a few screaming shots, we took Rory off of his lap. Michael then sat on Santa's lap! Santa started asking him if he liked Thomas the Train and of course this perked Michael up and he actually SPOKE to Santa! Then they both got peppermint suckers and were happy as clams after that. :) Michael did SO amazing and I was not expecting that at all. I'm so proud of him!
Tuesday, December 20, 2011
It happened again!!
So today Michael's teacher sent me an email telling me what they did at school. I asked Michael what he did today and he said
M: I went to school.
Me: Oh yeah? What else?
M: I go on school bus
Me: Oh yeah? What else?
M: I did circle time
Me: Anything else? Did you go to an assembly (the teacher said they went to a school-wide assembly)
M: Yeah
Me: Did you make candy canes with the teacher?
M: Yeah
:) This is so stinking awesome!!
M: I went to school.
Me: Oh yeah? What else?
M: I go on school bus
Me: Oh yeah? What else?
M: I did circle time
Me: Anything else? Did you go to an assembly (the teacher said they went to a school-wide assembly)
M: Yeah
Me: Did you make candy canes with the teacher?
M: Yeah
:) This is so stinking awesome!!
Friday, December 16, 2011
The most AMAZING breakthrough!
Last night I had the first semi-reciprocal conversation with Michael! Yeah, this sounds like no biggie, right? Not really. For months when I put him to bed, I'd ask him about his day and see what he would do/say. Usually it was "No way mama!" which recently turned to "Yeah!". But last night I asked him about school and he actually responded with spontaneous speech! I emailed his teacher to see if what he was telling me was really stuff that he did or not, but really it doesn't matter that much because he was having a conversation with me! I mostly led the discussion, but still it was amazing!
It went something like this:
Me: Did you learn about trains today at school?
M: Yeah!
Me: Did you play with sparkles (glitter)?
M: Yeah!
Me: What colors were the sparkles?
M: Red, Orange, Yellow, Green, Blue, Purple!
Me: Did you also learn about cars?
M: Yeah!
Me: What did you do with the cars?
M: Cars in a circle!
Me: You played with cars in a circle? What else did you do with the cars?
M: Down the slide!
Me: Wow what else did you do?
M: Blocks build a mountain!
Me: You built a mountain with the blocks? What else did the blocks do?
M: Going so fast!
Me: Did you throw them so they were flying so fast?
M: Yeah!
Me: Did you go outside and play?
M: Yeah
Me: After that did you come in and have a snack?
M: Yeah! Popcorn.
Me: You had popcorn? Anything else?
M: Red, Orange, Blue
Me: Were they cookies?
M: Yeah, cookies! Wheels!
Me: The cookies looked like wheels?
M: Yeah! Wheels! Tasty.
Me: What shapes were they?
M: Circles!
Then Rory started crying so I had to stop and put him to bed. I wanted to just stay and have this conversation FOREVER! <3
UPDATE!!! I just got an email from his teacher that said this!
"That’s AWESOME! We did have popcorn! And the red, orange and blue was a fruit roll up! Yes, he did play with blocks and with cars. He also played with the train. So, he did give an account of his morning!"
It went something like this:
Me: Did you learn about trains today at school?
M: Yeah!
Me: Did you play with sparkles (glitter)?
M: Yeah!
Me: What colors were the sparkles?
M: Red, Orange, Yellow, Green, Blue, Purple!
Me: Did you also learn about cars?
M: Yeah!
Me: What did you do with the cars?
M: Cars in a circle!
Me: You played with cars in a circle? What else did you do with the cars?
M: Down the slide!
Me: Wow what else did you do?
M: Blocks build a mountain!
Me: You built a mountain with the blocks? What else did the blocks do?
M: Going so fast!
Me: Did you throw them so they were flying so fast?
M: Yeah!
Me: Did you go outside and play?
M: Yeah
Me: After that did you come in and have a snack?
M: Yeah! Popcorn.
Me: You had popcorn? Anything else?
M: Red, Orange, Blue
Me: Were they cookies?
M: Yeah, cookies! Wheels!
Me: The cookies looked like wheels?
M: Yeah! Wheels! Tasty.
Me: What shapes were they?
M: Circles!
Then Rory started crying so I had to stop and put him to bed. I wanted to just stay and have this conversation FOREVER! <3
UPDATE!!! I just got an email from his teacher that said this!
"That’s AWESOME! We did have popcorn! And the red, orange and blue was a fruit roll up! Yes, he did play with blocks and with cars. He also played with the train. So, he did give an account of his morning!"
*HAPPY TEARS!!!*
Wednesday, November 23, 2011
Picnic!
At speech therapy today, we did a pretend picnic. At first Michael was protesting it, but after a minute or two, he decided he wanted to play. It took him a bit to get the idea of playing with imaginary food, but he caught on and was playing along. He would pass me my food and laugh as I pretended to take a bite. He even pretended to take imaginary bites too! We would ask him questions like "What kind of cookies should we have for our picnic?" and he wouldn't respond. But if we told him "Oh look, chocolate chip cookies and sugar cookies! Which does mommy get?" He would gladly make a decision. It was really cute. I bought the kids a bunch of play food for Christmas and now I'm pretty excited to play with them with it. :)
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