So tonight was open house at Monster's new school. We had never had one before. His last school never did anything like that.
We didn't have any child care, so Monster went with us (School said they preferred the kids stay home, but they preferred we were there with him than not there). he had a very busy afternoon: first trip to a new pediatrician, horseback riding and only about 10 minutes downtime before open house.
In preparation for open house, we put together a poster about Monster-pictures of the family, what he liked eating, favorite color, etc. He did about 50% of it himself, which was pretty good for him. I was concerned it would be too plain compared to the other kids, but when we saw them all together, it worked well; it fit right in with the others (one wouldn't be able to tell it was from a disabled kid--I should take a picture of it when we get it back).
Monster didn't last more than 2 minutes at the begininng of the open house, when everyone was in the gym. It was fairly loud, and hot, so I don't blame him for wanting to leave. Actually, he did really great all around, even though he didn't even want to be there. I think he was worried he would be asked to work ;)
After the initial talk, we all broke out to go to our kids' class. I found Mr and Monster and we decided to start in the library. Mr hadn't met the librarian (who happens to be my boss's wife) yet. After that, we went looking for Monster's class and stopped by his speech therapists (to ask for directions ;)). she is a wonderful lady, who is also new to the school. We chatted for a few minutes. She told us that Monster had really moved beyond PECS (picture exchange communication systems). I still remember at the beginning of this journey, the pitying look on the speech therapists face as she explained that PECS may be the only way Monster would be able to communicate with people. Don't get me wrong, PECS is an amazing and awesome way for non-verbal people to communicate with the world. I'm just amazed that someone would nearly "condemn" a child of 3 to a lifetime of using it without even trying to help him find his own voice. I doubt Monster will ever be a chatty kid, or adult, but he can speak if he needs to. It's so very sad that some people give up on these kids. I think it is a combination of low expectations (maybe they saw Rainman too many times) or just being overwhelmed. These kids aren't easy.
Back to Open House...
Monster's new SLP is awesome and seems willing to work with us to find ways to get Monster to work for her. She has a very good approach and is keen to read his cues and keep things fun enough that he'll keep working. Which is the key to working with our kids. I don't have experience with typical kids, so this may seem quite obvious to any parent. Kids on the spectrum can escape into their own heads. In fact, I would say they often prefer their own heads to our world since it is under their control and not overwhelming to them, that's why so many of us wonder if our kids have hearing problems at first. With Monster, especially when he was younger, once he "checked out", that was it--he was gone. He knew we were there, that the world was around him, but he didn't want anything to do with us. Over the last few years, he has being in this world with us, but he will still check out if he's too anything (too overwhelmed, too tired, too pissed off, too much food he shouldn't have). If you want him to work, it is a delicate balancing act of keeping him engaged and pushing him to do more. She seems to really get that.
Heck, the whole school seems to really get that.
After the Speech therapist, we went down to one of his two classrooms. Monster splits his day between 1:1 teacher time (in a "quiet" room, where he does his academics) and his homeroom class room, where he does group activities (calender time, PE, art, music). First we stopped off in his quiet room. Oh my! I saw his schedule and there must be something like 20 icons on there (Monster has what is known as a visual schedule, where his day is laid out in a series of pictures that he can pull off when he has completed his task. it tells him what is coming up and what he needs to do). He is kept moving all day, not a lot of times where he has "free play" or "free time" which is good since that's when he generally gets into trouble (bored, fixates on things). Now I know why he is so tired at the end of the day!
His special ed teacher has a lot of fantastic ideas. She seems to understand him fairly well-that he learns better when he can keep moving, she uses white boards a lot with him, doesn't make him sit down too much. She told us today that they are going to start increasing his time in the homeroom class starting Monday-they think he can start doing some of his table work in the class room with his peers. In her classroom, they have a trampoline, basketball hoop, a pit for jumping/crashing. It's really good for him.
Finally, we made it to his classroom. Unfortunately, Monster was beyond at the end of his rope. He had started asking to go home when we got to the library! We did get to chat with his teachers a little bit. During calender time, the teachers will try to ask him questions directly, and he will generally answer them correctly. According to one of his teachers, the other kids are actually amazed at how smart he is. I got the impression, they (the other kids in his class) thought he was one of the smartest in the class. We did meet a parent of one of the kids in his class. When she found out he was the Zachery, she told us that her son talks about him a lot. Apparently, her son likes to "talk with Zach". WOW.
As keeps happening to Mr and I, we spent most of the night fighting back tears (happy ones) as we spoke to everyone.
Losing my job wasn't fun, but this place is good for us.
Wednesday, September 23, 2009
Monday, September 21, 2009
Two steps forward, one step back (the redux)
It always happens, doesn't it? We leap forward a few steps then slide back down a bit.
Monster is still doing ok, but he's finally realized that school is WORK. Last week, he asked to stay home, and as always, we let him. I was fighting a bad cold, so Mr thought Monster wasn't feeling well. Mr asked Monster "are you ok?" he replied "Zach not ok", which Mr took to mean he wasn't feeling well. Of course, then Monster spent the rest of the day having fun, with no evidence of feeling poorly at all.
Both Thursday and Friday, Monster put up a fuss about getting out of the car and going to school. Today, he also put up a bit of a fuss. All three days, though, the fuss was getting less and he did go to school. After speaking to the principal, it sounds like they are really pushing him to spend more and more time in the classroom and less time either at sensory breaks or in private teacher time. This is tough work for him, I know that and finally he knows that. I finally get a taste of what moms of typical kids have to deal with ;)
Since I like to over analyze and think things to death, this challenge makes me look back on our journey with a wry smile. Mr and I get so hyper-focused on one thing, we seem to forget that that one thing isn't going to fix all the problems. Call it our own version of denial. For the longest time, it was getting Monster to interact with us. Then it was getting him to speak. Then it was getting him into an integrated program.
We've come a long way, but we still have such a long way to go. It sounds like I'm being pessimistic, but I'm not. I'm just so goal oriented, I often forget that reaching the goal is the beginning, not the end.
Monster is still doing ok, but he's finally realized that school is WORK. Last week, he asked to stay home, and as always, we let him. I was fighting a bad cold, so Mr thought Monster wasn't feeling well. Mr asked Monster "are you ok?" he replied "Zach not ok", which Mr took to mean he wasn't feeling well. Of course, then Monster spent the rest of the day having fun, with no evidence of feeling poorly at all.
Both Thursday and Friday, Monster put up a fuss about getting out of the car and going to school. Today, he also put up a bit of a fuss. All three days, though, the fuss was getting less and he did go to school. After speaking to the principal, it sounds like they are really pushing him to spend more and more time in the classroom and less time either at sensory breaks or in private teacher time. This is tough work for him, I know that and finally he knows that. I finally get a taste of what moms of typical kids have to deal with ;)
Since I like to over analyze and think things to death, this challenge makes me look back on our journey with a wry smile. Mr and I get so hyper-focused on one thing, we seem to forget that that one thing isn't going to fix all the problems. Call it our own version of denial. For the longest time, it was getting Monster to interact with us. Then it was getting him to speak. Then it was getting him into an integrated program.
We've come a long way, but we still have such a long way to go. It sounds like I'm being pessimistic, but I'm not. I'm just so goal oriented, I often forget that reaching the goal is the beginning, not the end.
Friday, September 11, 2009
Teacher's Note
Since I wasn't there, and I didn't actually see or hear anything, I just thought I would just copy what was written in Monster's communication book from today at school:
:D
He seems to like school so far.
Watched PE in gym-said "soccer" and wanted to play! Z had a great teacher time. He attended calender in class, for a full 15 minutes. The teacher asked him to complete the pattern and he told her and the class the answer...Z sat at his desk and wrote his name (hand over hand) and drew a triangle and a circle. At recess, Z's friend, K, asked him to play. [and according to his aide, he did go and play with her].
:D
He seems to like school so far.
Wednesday, September 9, 2009
School-Week 2
No pictures, sorry!
Day 2 (and beyond) was actually better than day 1, though it had a rocky start. We did find out that he spent a lot of Day 1 on teacher's (sped teacher in his classroom) lap, bestowing upon her many hugs and kisses. Before you say "ahhh....", know he fully realizes how cute he is and does this to get his way. We generally warn his teachers about it. Not at all an emotionless robot!
We got to school and took Monster down to his class. However, he really wanted to play on the playground. Parents were no longer allowed on the playground (that was just the first day) and anyway, the whistle blew and it was time for class. He was really working himself into a nice tantrum, when we got to the classroom. Standing outside was the principal, et. al., and she suggested we have our meeting outside so Monster could play while we spoke.
At our IEPs back in Fog City, it was very difficult to find a date/time that would allow everyone to attend. Budget cuts increased work loads and the number of meetings required for each professional. So color me surprised when our little informal meeting was attended by Monster's sped teacher, the sped teacher for second grade, the OT, the SLP, the principal, the Sped director, the social worker and a, drumroll please, a 1:1 aide that the principal called that morning for Monster. All arranged in less than 24 hrs.
The Sped director was very sweet, asking if we minded if Zach had a personal aide (without a lawsuit, even). They hadn't put together a system for him, but we went through what we thought would work, such as allowing him to go to a quiet room for individualized instruction, including him in group activities and more structured times, OT interventions, how he does things, setting up a PECS system and the like.
He made it through the entire day that second day, as well as all the days since. They put together a nice little schedule for him, including sensory breaks (did I mention they have a squeeze machine? basically rollers that provide deep input while he crawls through it), 1:1 time with the sped teacher, etc. They are still figuring out what he can do, and I think they aren't setting the bar too high right now, that will come, I'm sure. He does spend a majority of his day in individual instruction, but it's early yet; I would imagine it will take a while for him to get comfortable.
However, by all of our key parameters, he loves being in school. He has always enjoyed school, and now is no different. His sleep is ok; he has a difficulty winding down sometimes (Epsom salts are really helping, nights he doesn't have them in his bath-because we ran out and there aren't any nearby stores-he's more wired), but he is being chatty (mostly) during those times. We don't understand him, but a lot of the time, there are words. Mr. thinks Monster is going over things he saw and is processing things, and he's likely right. He willingly gets ready for school, and easily goes out to the car for class. He will say he's happy (when asked if he is happy or sad). The only downside so far, is increased hand biting.
Monster's language is doing great. He continues to be fairly adamant in trying to control all of us, but I don't mind too much. His latest is saying "I love you" when he wants to play on the computer and I want him to answer questions. OK, it sounds like "I yuy oo", but I know what he means-"I'm cute, so let me have my way".
I know we have a lot of work ahead of us. As we challenge him, things will get rockier. But for the first time since we started down this road, I finally feel like he has a chance to really reach however high he will. In some ways, it's scary. It's time to walk the walk that my mouth has been talking over the last few years.
Time to see if I was right.
Day 2 (and beyond) was actually better than day 1, though it had a rocky start. We did find out that he spent a lot of Day 1 on teacher's (sped teacher in his classroom) lap, bestowing upon her many hugs and kisses. Before you say "ahhh....", know he fully realizes how cute he is and does this to get his way. We generally warn his teachers about it. Not at all an emotionless robot!
We got to school and took Monster down to his class. However, he really wanted to play on the playground. Parents were no longer allowed on the playground (that was just the first day) and anyway, the whistle blew and it was time for class. He was really working himself into a nice tantrum, when we got to the classroom. Standing outside was the principal, et. al., and she suggested we have our meeting outside so Monster could play while we spoke.
At our IEPs back in Fog City, it was very difficult to find a date/time that would allow everyone to attend. Budget cuts increased work loads and the number of meetings required for each professional. So color me surprised when our little informal meeting was attended by Monster's sped teacher, the sped teacher for second grade, the OT, the SLP, the principal, the Sped director, the social worker and a, drumroll please, a 1:1 aide that the principal called that morning for Monster. All arranged in less than 24 hrs.
The Sped director was very sweet, asking if we minded if Zach had a personal aide (without a lawsuit, even). They hadn't put together a system for him, but we went through what we thought would work, such as allowing him to go to a quiet room for individualized instruction, including him in group activities and more structured times, OT interventions, how he does things, setting up a PECS system and the like.
He made it through the entire day that second day, as well as all the days since. They put together a nice little schedule for him, including sensory breaks (did I mention they have a squeeze machine? basically rollers that provide deep input while he crawls through it), 1:1 time with the sped teacher, etc. They are still figuring out what he can do, and I think they aren't setting the bar too high right now, that will come, I'm sure. He does spend a majority of his day in individual instruction, but it's early yet; I would imagine it will take a while for him to get comfortable.
However, by all of our key parameters, he loves being in school. He has always enjoyed school, and now is no different. His sleep is ok; he has a difficulty winding down sometimes (Epsom salts are really helping, nights he doesn't have them in his bath-because we ran out and there aren't any nearby stores-he's more wired), but he is being chatty (mostly) during those times. We don't understand him, but a lot of the time, there are words. Mr. thinks Monster is going over things he saw and is processing things, and he's likely right. He willingly gets ready for school, and easily goes out to the car for class. He will say he's happy (when asked if he is happy or sad). The only downside so far, is increased hand biting.
Monster's language is doing great. He continues to be fairly adamant in trying to control all of us, but I don't mind too much. His latest is saying "I love you" when he wants to play on the computer and I want him to answer questions. OK, it sounds like "I yuy oo", but I know what he means-"I'm cute, so let me have my way".
I know we have a lot of work ahead of us. As we challenge him, things will get rockier. But for the first time since we started down this road, I finally feel like he has a chance to really reach however high he will. In some ways, it's scary. It's time to walk the walk that my mouth has been talking over the last few years.
Time to see if I was right.
Wednesday, September 2, 2009
First Day of School
Boy, am I glad the first day is over. I can finally stop obsessing about it.
Today was Monster's first day of first grade. It was also his first day at his new school, his first full day of school, his first day in a mainstream classroom and his first day having to eat lunch in a cafeteria (well, sort of).
Overall, I give the experience two thumbs up. I'm fairly exhausted (I didn't sleep much last night) so I may not make a lot of sense and ramble ;)
Before today, Mr had been taking Monster to the school in the morning and walking him down to his classroom. They hit the jackpot yesterday and managed to hook up with Monster's teachers. Mr and the teachers got to chat for a bit in Monster's new classroom while Monster got to chill out playing on his iPod (Note: if you have a child with autism, I highly urge you to get an iPod touch or iPhone for him/her, it is a very versatile, useful). Mr. said that Monster gave one of his teachers a hug before they left.
Mr and I got up at 6:00 to make sure we got everything ready. We didn't need to be at school until 8 and we were actually rushing a bit at the end. Don't ask me why, but we were so stressed and bit insane that we couldn't hit a grove. Monster woke up about 6:30 and started getting whiny because Sesame street wasn't on yet (Note to self, set up DVR for Sesame Street). He wanted to start on the DVDs, but we didn't want that since it makes it more difficult to get him out the door when he starts (he will focus and obsess with watching the transition to sneak peeks on his Disney DVDs, he doesn't actually watch the movies once he starts, he doesn't like to be told to stop and this can initiate a major meltdown, especially if he was tired). We managed to get all of his various meds (supplements, etc) down him along with some corn puffs (his breakfast) and apple juice. One or two minor whines, but all-in-all it went fairly well. When I had him put on his backpack and go out of the house, he did so with a giggle and a smile.
Even though we were rushing, we got to school fairly early so he could play in the play yard. The school folks told us that, in general, the kids play for a bit after the buses get there before they line up for class. He was excited about being there (he had played there several times already), but everything had a coating of dew on it (Monster hates wet clothes, shoes, etc) so he didn't get to swing or anything. He seemed to be having fun, though.
During this time, I was able to meet with Monster's teachers. For background, Monster's new school has a different approach to special ed. Instead of a special day class, they use a co-teaching model. The class has one general and one special education teacher along with at least one aide. The special needs child is in the general education environment and integrated into the class as much as appropriate. It exposes the neurotypical children to neurodiversity and it allows the special needs child to learn and practice social interactions. For Monster, this is ideal because he seems to crave other kids. He doesn't know how to interact with them which causes him anxiety. It takes him a while to try new things and he prefers to observe something for a long time before trying it. This situation should give him the opportunity to observe other kids and get comfortable enough to start to interact with them (that's the idea, anyway ;)).
Back to the first day...other kids starting showing up, and eventually the yard got extremely chaotic. Still, Monster stayed in the middle of it fairly well for a while. I was playing with some of the other kids, trying to show him kids are cool. Eventually, he walked off by himself to lay down on a bench in a quiet corner of the yard. I was pretty happy about that, it showed he knew he needed some down time and found it.
During the chaos, I learned that the procedure for school is the student put his/her backpack in the line that corresponded to his class. Monster's line was No. 13, which for us is a lucky number (long story for another blog) so we took that as a good omen. Once I learned this, we had Monster walk his backpack to his spot in line, drop his backpack and go back to playing.
We cuddled for a few minutes in the quiet place before the whistle blew and my nerves really ratcheted up. Mr and I each took a hand and we started walking to wait in line. Monster resisted a bit, saying playground, but I think he was just pushing boundaries-he didn't try to break away and we were able to direct him to the line fairly easily. He didn't do that well in the line, however. There were a lot of kids and parents (the kid in front of him was crying in his mom's arms, poor baby) with his stuff in the middle of it. It reminded me of a semi-controlled mosh pit. Monster was wide eyed and I could feel his anxiety start to climb (up until now, he was getting overstimulated, but he wasn't really anxious that I could tell). He was very good about telling us he wanted his backpack off. Very adamant! He did keep it on, though, so I think he was pushing his boundaries again. We chose to bring him to the back of the line, where it was less crowded and waited until it was time for him to go in. After a few minutes, teacher started to take his class in. The special ed teacher came up and took his hand to lead him in and, with a sad little look over his shoulder and a shouted "I love you, Baby" from mom, away he went.
Mr was given permission by the teacher to peek in the window, so he did and caught Monster chilling in the bean bag (Monster also caught Mr peeking). No screaming, no crying, no meltdown (not even me). Phase one was complete, separation was achieved with Mommy having a tougher time than Monster.
About 2 hours after school started, I got a call from the school nurse. Everything was fine, but Monster bit off an swallowed part of a toy. Fortunately, that was the worst of the day.
Before school started, we had set up a system with the school for Monster if he started having problems. He would be given the option of talking to mom or dad on the phone, and if he wanted to go home he could. At lunch time, 3 hrs after he was led away from us and 3 hours before school would be out, Mr got the call. It was lunch time and Monster was asking for Daddy. Because lunch was going to be in the cafeteria, which could be loud and crazy, it was decided that Mr would pick him up and the day would end there on a positive note.
While picking Monster up, Mr got to talk to the principal and teachers again. The plan for tomorrow is for Mr and I to walk Monster down to his classroom, rather than have him line up. Afterward, we are suppose to meet with the "team" (we think the SLP, OT, Sped teacher, etc) for a bit. Mr is going to eat lunch with Monster to help him get through that tough place. After lunch, Monster will have the choice to stay for the remainder of the day. I think he will likely stay if he can get through lunch.
I must say I'm completely impressed with the school and the staff and have high hopes for the upcoming school year.
Today was Monster's first day of first grade. It was also his first day at his new school, his first full day of school, his first day in a mainstream classroom and his first day having to eat lunch in a cafeteria (well, sort of).
Overall, I give the experience two thumbs up. I'm fairly exhausted (I didn't sleep much last night) so I may not make a lot of sense and ramble ;)
Before today, Mr had been taking Monster to the school in the morning and walking him down to his classroom. They hit the jackpot yesterday and managed to hook up with Monster's teachers. Mr and the teachers got to chat for a bit in Monster's new classroom while Monster got to chill out playing on his iPod (Note: if you have a child with autism, I highly urge you to get an iPod touch or iPhone for him/her, it is a very versatile, useful). Mr. said that Monster gave one of his teachers a hug before they left.
Mr and I got up at 6:00 to make sure we got everything ready. We didn't need to be at school until 8 and we were actually rushing a bit at the end. Don't ask me why, but we were so stressed and bit insane that we couldn't hit a grove. Monster woke up about 6:30 and started getting whiny because Sesame street wasn't on yet (Note to self, set up DVR for Sesame Street). He wanted to start on the DVDs, but we didn't want that since it makes it more difficult to get him out the door when he starts (he will focus and obsess with watching the transition to sneak peeks on his Disney DVDs, he doesn't actually watch the movies once he starts, he doesn't like to be told to stop and this can initiate a major meltdown, especially if he was tired). We managed to get all of his various meds (supplements, etc) down him along with some corn puffs (his breakfast) and apple juice. One or two minor whines, but all-in-all it went fairly well. When I had him put on his backpack and go out of the house, he did so with a giggle and a smile.
Even though we were rushing, we got to school fairly early so he could play in the play yard. The school folks told us that, in general, the kids play for a bit after the buses get there before they line up for class. He was excited about being there (he had played there several times already), but everything had a coating of dew on it (Monster hates wet clothes, shoes, etc) so he didn't get to swing or anything. He seemed to be having fun, though.
During this time, I was able to meet with Monster's teachers. For background, Monster's new school has a different approach to special ed. Instead of a special day class, they use a co-teaching model. The class has one general and one special education teacher along with at least one aide. The special needs child is in the general education environment and integrated into the class as much as appropriate. It exposes the neurotypical children to neurodiversity and it allows the special needs child to learn and practice social interactions. For Monster, this is ideal because he seems to crave other kids. He doesn't know how to interact with them which causes him anxiety. It takes him a while to try new things and he prefers to observe something for a long time before trying it. This situation should give him the opportunity to observe other kids and get comfortable enough to start to interact with them (that's the idea, anyway ;)).
Back to the first day...other kids starting showing up, and eventually the yard got extremely chaotic. Still, Monster stayed in the middle of it fairly well for a while. I was playing with some of the other kids, trying to show him kids are cool. Eventually, he walked off by himself to lay down on a bench in a quiet corner of the yard. I was pretty happy about that, it showed he knew he needed some down time and found it.
During the chaos, I learned that the procedure for school is the student put his/her backpack in the line that corresponded to his class. Monster's line was No. 13, which for us is a lucky number (long story for another blog) so we took that as a good omen. Once I learned this, we had Monster walk his backpack to his spot in line, drop his backpack and go back to playing.
We cuddled for a few minutes in the quiet place before the whistle blew and my nerves really ratcheted up. Mr and I each took a hand and we started walking to wait in line. Monster resisted a bit, saying playground, but I think he was just pushing boundaries-he didn't try to break away and we were able to direct him to the line fairly easily. He didn't do that well in the line, however. There were a lot of kids and parents (the kid in front of him was crying in his mom's arms, poor baby) with his stuff in the middle of it. It reminded me of a semi-controlled mosh pit. Monster was wide eyed and I could feel his anxiety start to climb (up until now, he was getting overstimulated, but he wasn't really anxious that I could tell). He was very good about telling us he wanted his backpack off. Very adamant! He did keep it on, though, so I think he was pushing his boundaries again. We chose to bring him to the back of the line, where it was less crowded and waited until it was time for him to go in. After a few minutes, teacher started to take his class in. The special ed teacher came up and took his hand to lead him in and, with a sad little look over his shoulder and a shouted "I love you, Baby" from mom, away he went.
Mr was given permission by the teacher to peek in the window, so he did and caught Monster chilling in the bean bag (Monster also caught Mr peeking). No screaming, no crying, no meltdown (not even me). Phase one was complete, separation was achieved with Mommy having a tougher time than Monster.
About 2 hours after school started, I got a call from the school nurse. Everything was fine, but Monster bit off an swallowed part of a toy. Fortunately, that was the worst of the day.
Before school started, we had set up a system with the school for Monster if he started having problems. He would be given the option of talking to mom or dad on the phone, and if he wanted to go home he could. At lunch time, 3 hrs after he was led away from us and 3 hours before school would be out, Mr got the call. It was lunch time and Monster was asking for Daddy. Because lunch was going to be in the cafeteria, which could be loud and crazy, it was decided that Mr would pick him up and the day would end there on a positive note.
While picking Monster up, Mr got to talk to the principal and teachers again. The plan for tomorrow is for Mr and I to walk Monster down to his classroom, rather than have him line up. Afterward, we are suppose to meet with the "team" (we think the SLP, OT, Sped teacher, etc) for a bit. Mr is going to eat lunch with Monster to help him get through that tough place. After lunch, Monster will have the choice to stay for the remainder of the day. I think he will likely stay if he can get through lunch.
I must say I'm completely impressed with the school and the staff and have high hopes for the upcoming school year.
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