Oh. My. Word.
I don't know what to do!
Usually, I don't like to be a complainer all the time here. But I just need to grouch. I can be honest here, right?
We need sleep help!
Let's use last night as an example. We put the boys to bed at 8:30 (a little late for NB because of church). And at 9:30 when we were in bed, I could still hear both of them awake. NB, especially, prefers not to go to sleep, so he really works to keep himself awake sometimes---making noise, pulling out toys, trying to open his door, etc. Alright, so I fall asleep a little after ten, I think. As far as I know the boys were asleep then. At 4:30, I am woken up by one of them yelling, I think it's NB but I'm not sure. I do my best to go back to sleep after ascertaining that it's not a yell of pain or fright. I wake up again at 5:30, hearing the front door close, then hearing PJ5 open his door. I know the front door must be PJ leaving, although this is an hour before he usually leaves. (I haven't checked with him, but he probably left early just because he was awake and didn't want to try to sleep for 45 minutes.....he's done that before.) I get up, since I hear PJ5 opening his door and making noise. Finding PJ5 in the kitchen, I tell him it's not time to get up and it's still bedtime. I escort him to his room, turn on his bedtime CD, and close the door. He doesn't protest, so I count my blessings and go back to bed. My alarm goes off at 6:30. I groggily go through my morning routine, then wake up NB at 7:00 to get him fed and ready for the bus, which arrives at 7:20 (approx.). PJ5 comes out of his room when he hears the bus pull up and acts like he wants to go out the door. I tell him this is his brother's turn to get on the bus and he will get on later, while trying to get NB out the door and PJ5 to stay in. I'm afraid that PJ5 will get really tired later and fall asleep this afternoon, which will make it harder for him to go to sleep at bedtime.
In explanation, usually PJ5 sleeps in 'til at least 8 or 8:30. And I don't mind if he wakes up when I'm up and getting NB ready. Actually, it's probably good, because he will need to get up that early this fall.
No, it's the early, early wakings that need to stop. And it's not always PJ5 that wakes in the middle of the night. Over the last week, the two boys have alternated waking us in the middle of the night....at least 5 nights out of 7. Hubby and I are both tired alot. Last Friday someone at work asked him if he had been staying up late because he was so tired. I keep having to take out my contacts and wear my glasses because my eyes are tired and irritated. Sometimes, when PJ5 wakes up in the middle of the night, he will stay up for an hour or more, then go back to sleep and sleep-in late. When NB wakes up, he also takes a long time to go back to sleep, then it's hard to get him up in the morning for school.
It's not unusual for people with autism to have sleep issues. Some parents say their kids just don't need as much sleep as others. But I don't buy into that. How can someone function on too little sleep? Some parents of young adults with autism, make their schedules fit their child's sleeping habits, but you can't do that when your kids are school age and have to keep some kind of schedule.
Some parents give their kids melatonin to help, but I'm not sure how much to give for kids this small. I tried it once. It's also hard to disguise "medicine" with PJ5. If you put it in a drink he can tell. The best ways I've discovered for him are peanut butter or applesauce. But there's no guarantee that he will want one of those right before bedtime. I guess I'll try it again and see if it helps. NB fights sleep so hard that last night I said to hubby, "maybe I need to train him to calm down and relax and fall asleep". He's always gone to sleep on his own since he was around a year old. I don't want to make him dependent on me for getting to sleep, but I also want him (and me) to sleep!
This is the main reason that we don't make the boys share a room. They rarely both wake up on the same night, and we don't want them to start waking each other up. This summer we will be going on a vacation, and for a week or more all four of us will share a room at night. I'm trying to figure out how to make it work. If one boy wakes up, should one parent take them out of the room so the other doesn't wake? Then how will the awake child get back to sleep? Never mind, I haven't had enough sleep to try to figure that out right now. We shared a hotel room a couple of months ago and it took a long time to get everyone settled down to sleep, especially NB. Then in the morning, PJ5 woke up early (6-ish, I think) and I tried to keep him from waking up NB, but only succeeded for about 30 minutes. We were all tired the next day. I can't see that happening for a full week.
This also does not help my insomnia problems, but I'm not going into that right now. Another time.
3.29.2010
3.24.2010
Moving?....or Not
I knew it would be awhile before I got back to my list....
I'm probably not going to say as much about moving. Because now I'm not sure it's going to happen. We are wanting some more space (more than the 1100 sqft. we have) and thought this would be the year we look for our next house. But, finances don't look perfect for that right now. Experts are saying that rates will be going up by the end of the year, and it would be nice to take advantage of the low rates plus the current homebuyer "kick-back" that's available. We're going into aggressive "save" mode and we'll see how our nest-egg looks this summer. We're trying to keep the house we have and rent it out.
We aren't planning to move far, and actually would like to stay in our current school district. We just need some more living space, an extra bedroom, a larger dining room, and a bigger kitchen. Not much, huh? At this time, it's better for the boys to have separate rooms, so
We've thought about adding on to this house, but I can't figure out how to get what we want with the layout/floor-plan we have.
Only time will tell if a change-of-address lies in our near future.
I'm probably not going to say as much about moving. Because now I'm not sure it's going to happen. We are wanting some more space (more than the 1100 sqft. we have) and thought this would be the year we look for our next house. But, finances don't look perfect for that right now. Experts are saying that rates will be going up by the end of the year, and it would be nice to take advantage of the low rates plus the current homebuyer "kick-back" that's available. We're going into aggressive "save" mode and we'll see how our nest-egg looks this summer. We're trying to keep the house we have and rent it out.
We aren't planning to move far, and actually would like to stay in our current school district. We just need some more living space, an extra bedroom, a larger dining room, and a bigger kitchen. Not much, huh? At this time, it's better for the boys to have separate rooms, so
We've thought about adding on to this house, but I can't figure out how to get what we want with the layout/floor-plan we have.
Only time will tell if a change-of-address lies in our near future.
3.09.2010
Five going on six
That has nothing to do with the number of children we have. That is the age of my oldest child, PJ5. There has been a lot going on with him recently. (Some of which some of you will already know.)
About a month ago, his teacher called to talk about him. Essentially, he was having a behavior problem that was preventing him from making much, if any, progress at school. I call it "flopping". He makes this short yelp/scream, then falls over onto the floor or wherever he is sitting. If you tried to make him get up he resists and may do the behavior again. If you leave him alone he usually gets over it quickly and goes on. The teacher said he was doing this alot at school and wondered if we were seeing the same behavior at home. We did, and I couldn't figure out any pattern to why he did it. It happened at very random times. At home, in the car, you name it. If I couldn't ignore it (say it happened walking down a hallway or in a parking lot) I simply took him step-by-step past it----"stand up" repeat 'til he does, "take my hand" repeat 'til he does, "walk with me" repeat 'til he does...you get the picture. Usually when children with autism have a "problem behavior" you become a detective and figure out the precedent and antecedent to the behavior. Which tells you why the child is doing this and what he/she gets out of the behavior---e.g. escape, avoidance, a treat, attention, etc. But this behavior had me completely stumped.
Evidently, it has his teachers stumped, too. They have tried several different ways to deal with it, approaching it in many different ways, and changing their assumptions about why he was having these "tantrums". But they haven't figured it out either. They won't (or can't---he's pretty big) force him to do things, so this has prevented the teacher from doing one-on-one teaching with him. He won't cooperate. They also had to quit taking him to the "regular" kindergarten classroom, because he would flop in there and once accidentally kicked another child. (He had been going to the regular-ed class with an aide for twenty+ minutes per day.)
Another problem they have is that he simply won't engage with them. He's in his own world and won't come out. That also prevents him from making any learning progress.
Of course, this made me depressed for awhile, then I decided on a course of action. It included reducing his sugar and wheat intake, giving him probiotics again, and dedicating my mornings (while NB is at school and PJ5 at home with me) to working on one-on-one engagement. I do this (engagement) some, but probably not as much as I should. It's hard on me emotionally. I'm not sure how to explain, but imagine you talk to and interact with a child, but they don't look at you or respond much. But you keep doing it. Then imagine that is your son who won't respond to you. Then imagine doing that for a solid hour. Then imagine going through that hour every day. Then imagine the feeling that you may do this forever and still not get much response from your child. I do work on engagement with him everyday, just in small doses throughout the day. That's easier to handle. I decided to start this course of action the following Monday (it being a Thursday that I received the call). But that did not happen.
On the following Monday I was taking him to the doctor with a nasty place on his face (insect bite? rash?) and a low-grade fever. It turned out to be a staph infection and he stayed home from school the whole week. And I had no thought of doing any of the things I had planned. Instead I was forcing antibiotics down him twice a day (and it was a wrestling, crying, screaming thing that could last as long as ten minutes), and cleaning and medicating his sore four times a day. In between, he was lethargic, slept more, and ate little. The only time he screamed was when I gave him medicine or messed with his sore.
The next Monday he was healed enough to be able to return to school. He had started telling himself "no sc-eaming" after I gave him his medicine. I broke down after about 8 days of giving him medicine. I just couldn't do it anymore---looking into his eyes, sometimes filled with fear, sometimes anger, hearing his cries and screams (he was actually saying words like no, stop, and mommy). Fortunately for me, he developed a rash after 8 days of antibiotics and we were told to stop them. Unfortunately, I had to force Benadryl down him for a couple days. On a side note, the doctor doesn't think he is allergic to that antibiotic, but was reacting to something else since the rash came a week after starting the medicine. !!! I think his body had finally had enough of that antibiotic and reacted to it. I am allergic to what he was taking, and he is already allergic to another antibiotic. But, what do I know!?
By the end of this time-period his tantrums had drastically reduced, and he was seeking our company much more than before. He seemed to have more social awareness and was more affectionate and engaged. (not 100% by any means, but improved) After he had been back in school for 7 days I called his teacher to see what they were seeing from him there. She also reported less tantrums, but said he still wasn't engaging with them. And so it stands. I really have no explanation for why his behavior changed while he was sick. A lot of scientists are beginning to see a connection between autism and the immune system, some even categorizing it as autoimmune-related. I have heard a parent's explanation that it's like their immune system is in overdrive all the time and finally has something real to deal with when they're sick.
Well, now for the future. He is going to be in 1st grade in the fall and school will be all-day. That's going to mean a schedule adjustment, and I'm not waiting until then to start. Mornings are not his best time, and he likes to sleep in. We're also pondering whether to take him out of the public school system. (don't tell them that yet) We've always planned to take him out someday, but thought it would be another year or two down the road. BUT, if he's not making progress and they are not able to help him past this roadblock (for lack of a better word) then what benefit is he gettting by going there? Don't get me wrong. I love his school and his teachers and therapists and they have helped him a lot, and they are doing their best and trying (and really want) to help him now. But maybe he has reached the point where he needs something different.
We're going to give it some time (finish the school year at least), and then decide. Then what? Well, that's what I'll be looking at while we let the school do their best. Home-school or Christian school? There's alot I could say on that, but maybe another post. Neither option is cheap. I haven't found any Christian school in the area that actually advertises a "special needs" program. That doesn't mean they don't have someone that might be qualified/willing to help someone like PJ5 in their school. Just that they aren't saying it on their website. If homeschool, then we'll have to really work to make the social opportunities happen, because he needs that.
Also, we are thinking about some changes in the home therapies we are doing. Still in the thinking/praying/exploring stage on this so I won't say more right now. From the beginning we knew we would need to do more for him than what the school provides. There are several options but you have to choose one or two at a time. They all take resources---time, energy, money. And you can't do one for a month and then decide if it's working. You have to allow months of time to pass to see if they are getting any benefit.
As always, we appreciate your prayers for us. Right now, pray that our next steps will be clear to us, and that doors would open or close as He reveals His will for PJ5 and our family.
About a month ago, his teacher called to talk about him. Essentially, he was having a behavior problem that was preventing him from making much, if any, progress at school. I call it "flopping". He makes this short yelp/scream, then falls over onto the floor or wherever he is sitting. If you tried to make him get up he resists and may do the behavior again. If you leave him alone he usually gets over it quickly and goes on. The teacher said he was doing this alot at school and wondered if we were seeing the same behavior at home. We did, and I couldn't figure out any pattern to why he did it. It happened at very random times. At home, in the car, you name it. If I couldn't ignore it (say it happened walking down a hallway or in a parking lot) I simply took him step-by-step past it----"stand up" repeat 'til he does, "take my hand" repeat 'til he does, "walk with me" repeat 'til he does...you get the picture. Usually when children with autism have a "problem behavior" you become a detective and figure out the precedent and antecedent to the behavior. Which tells you why the child is doing this and what he/she gets out of the behavior---e.g. escape, avoidance, a treat, attention, etc. But this behavior had me completely stumped.
Evidently, it has his teachers stumped, too. They have tried several different ways to deal with it, approaching it in many different ways, and changing their assumptions about why he was having these "tantrums". But they haven't figured it out either. They won't (or can't---he's pretty big) force him to do things, so this has prevented the teacher from doing one-on-one teaching with him. He won't cooperate. They also had to quit taking him to the "regular" kindergarten classroom, because he would flop in there and once accidentally kicked another child. (He had been going to the regular-ed class with an aide for twenty+ minutes per day.)
Another problem they have is that he simply won't engage with them. He's in his own world and won't come out. That also prevents him from making any learning progress.
Of course, this made me depressed for awhile, then I decided on a course of action. It included reducing his sugar and wheat intake, giving him probiotics again, and dedicating my mornings (while NB is at school and PJ5 at home with me) to working on one-on-one engagement. I do this (engagement) some, but probably not as much as I should. It's hard on me emotionally. I'm not sure how to explain, but imagine you talk to and interact with a child, but they don't look at you or respond much. But you keep doing it. Then imagine that is your son who won't respond to you. Then imagine doing that for a solid hour. Then imagine going through that hour every day. Then imagine the feeling that you may do this forever and still not get much response from your child. I do work on engagement with him everyday, just in small doses throughout the day. That's easier to handle. I decided to start this course of action the following Monday (it being a Thursday that I received the call). But that did not happen.
On the following Monday I was taking him to the doctor with a nasty place on his face (insect bite? rash?) and a low-grade fever. It turned out to be a staph infection and he stayed home from school the whole week. And I had no thought of doing any of the things I had planned. Instead I was forcing antibiotics down him twice a day (and it was a wrestling, crying, screaming thing that could last as long as ten minutes), and cleaning and medicating his sore four times a day. In between, he was lethargic, slept more, and ate little. The only time he screamed was when I gave him medicine or messed with his sore.
The next Monday he was healed enough to be able to return to school. He had started telling himself "no sc-eaming" after I gave him his medicine. I broke down after about 8 days of giving him medicine. I just couldn't do it anymore---looking into his eyes, sometimes filled with fear, sometimes anger, hearing his cries and screams (he was actually saying words like no, stop, and mommy). Fortunately for me, he developed a rash after 8 days of antibiotics and we were told to stop them. Unfortunately, I had to force Benadryl down him for a couple days. On a side note, the doctor doesn't think he is allergic to that antibiotic, but was reacting to something else since the rash came a week after starting the medicine. !!! I think his body had finally had enough of that antibiotic and reacted to it. I am allergic to what he was taking, and he is already allergic to another antibiotic. But, what do I know!?
By the end of this time-period his tantrums had drastically reduced, and he was seeking our company much more than before. He seemed to have more social awareness and was more affectionate and engaged. (not 100% by any means, but improved) After he had been back in school for 7 days I called his teacher to see what they were seeing from him there. She also reported less tantrums, but said he still wasn't engaging with them. And so it stands. I really have no explanation for why his behavior changed while he was sick. A lot of scientists are beginning to see a connection between autism and the immune system, some even categorizing it as autoimmune-related. I have heard a parent's explanation that it's like their immune system is in overdrive all the time and finally has something real to deal with when they're sick.
Well, now for the future. He is going to be in 1st grade in the fall and school will be all-day. That's going to mean a schedule adjustment, and I'm not waiting until then to start. Mornings are not his best time, and he likes to sleep in. We're also pondering whether to take him out of the public school system. (don't tell them that yet) We've always planned to take him out someday, but thought it would be another year or two down the road. BUT, if he's not making progress and they are not able to help him past this roadblock (for lack of a better word) then what benefit is he gettting by going there? Don't get me wrong. I love his school and his teachers and therapists and they have helped him a lot, and they are doing their best and trying (and really want) to help him now. But maybe he has reached the point where he needs something different.
We're going to give it some time (finish the school year at least), and then decide. Then what? Well, that's what I'll be looking at while we let the school do their best. Home-school or Christian school? There's alot I could say on that, but maybe another post. Neither option is cheap. I haven't found any Christian school in the area that actually advertises a "special needs" program. That doesn't mean they don't have someone that might be qualified/willing to help someone like PJ5 in their school. Just that they aren't saying it on their website. If homeschool, then we'll have to really work to make the social opportunities happen, because he needs that.
Also, we are thinking about some changes in the home therapies we are doing. Still in the thinking/praying/exploring stage on this so I won't say more right now. From the beginning we knew we would need to do more for him than what the school provides. There are several options but you have to choose one or two at a time. They all take resources---time, energy, money. And you can't do one for a month and then decide if it's working. You have to allow months of time to pass to see if they are getting any benefit.
As always, we appreciate your prayers for us. Right now, pray that our next steps will be clear to us, and that doors would open or close as He reveals His will for PJ5 and our family.
3.04.2010
much to say
There's so much I want to talk about here, but don't have time for it all. So I'll just mention each one and do more detailed posts later.
PJ5's behavior/school/health
Earthquakes, etc.
Thoughts on moving
My health
I've been working on making some kind of picture cards for the boys (especially PJ5) that can be used for making choices, following a schedule, and as cue/reminder cards. I printed some out today and used four cards to help PJ5 through the steps of getting dressed. Currently, he stays in bed (or at the least in his bedroom) until I go in his room and "get him up"---helping him get dressed, etc. This morning he looked at the cards I brought and wanted to play with them, but I just showed him each card before doing that step. I left him for a little bit, and when I returned he was still in bed, albeit dressed! I showed him a 'get up' card and "helped" him sit on the edge of his bed. Then I asked him what he wanted to eat for breakfast and showed him a "waffle" card and a "peanut butter sandwich" card. His face lit up and he chose the pb-sandwich card, and I led him to the kitchen and made what he wanted. Later, after dropping off NB at MDO, I showed him two cards, one with the Wendy's logo and one with the McD's logo. (It's become a habit to take him to one of those places and pick up chicken for his lunch on the days I take NB to mother's day out.) He was very excited to see the cards and tried to say the names after me. That's the first time I've ever heard him attempt to say "wendy's" or "mcdonald's"! I told him to choose the one he wanted and he picked the McD's card and held it until we got to the drive-thru and then I took it back. So far I like the results of this experiment. Now I just need to figure out a way to make the "cards" (which are really just small pieces of paper) more sturdy without buying a laminating machine.
PJ5's behavior/school/health
Earthquakes, etc.
Thoughts on moving
My health
I've been working on making some kind of picture cards for the boys (especially PJ5) that can be used for making choices, following a schedule, and as cue/reminder cards. I printed some out today and used four cards to help PJ5 through the steps of getting dressed. Currently, he stays in bed (or at the least in his bedroom) until I go in his room and "get him up"---helping him get dressed, etc. This morning he looked at the cards I brought and wanted to play with them, but I just showed him each card before doing that step. I left him for a little bit, and when I returned he was still in bed, albeit dressed! I showed him a 'get up' card and "helped" him sit on the edge of his bed. Then I asked him what he wanted to eat for breakfast and showed him a "waffle" card and a "peanut butter sandwich" card. His face lit up and he chose the pb-sandwich card, and I led him to the kitchen and made what he wanted. Later, after dropping off NB at MDO, I showed him two cards, one with the Wendy's logo and one with the McD's logo. (It's become a habit to take him to one of those places and pick up chicken for his lunch on the days I take NB to mother's day out.) He was very excited to see the cards and tried to say the names after me. That's the first time I've ever heard him attempt to say "wendy's" or "mcdonald's"! I told him to choose the one he wanted and he picked the McD's card and held it until we got to the drive-thru and then I took it back. So far I like the results of this experiment. Now I just need to figure out a way to make the "cards" (which are really just small pieces of paper) more sturdy without buying a laminating machine.
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