Wednesday, July 8, 2009
slow going I know
I have been so busy things are crazy here. I had planned to get more info here sooner but things keep coming up. This is to let ya'll know our most recent developments. My son chubby, age 6 has always been sick, constipation, impacted colon. Many hospital trips. He had problems as a breast fed baby. I finally fond a doc to listen! She sent him to a specialist. She did lots of tests. He is now on a dairy free diet, and laxative for min of 1 1/2 year to hopefully retrain his bowel and reverse some of the damage done over the last 6 years. She checked for Celia Disease. According to her the blood work came back no. But while waiting I started reading about celiac and gluten free, wow what a shock. A large part of the kids have some or most of the symptoms, some worse than others. Since the blood tests came back no for him she wont do the intestinal biopsy. So we are gluten free to see what happens. If he shows improvement I let her know and we go from there. Since its hard to cook separate meals, and gluten is in everything. I would cook separate, I would also risk him eating something to make him ill, and I want to see the other kids reactions, do they improve any in some problem areas. We are all doing it. I have found many resources with info. I will add them to the links. It has been harder with no dairy also. I have read that Autistic kids sometime improve or have all symptoms go away with no gluten, so we will see.
Monday, May 25, 2009
Routine/chores/schedule/lists
Ya so its taken me longer to get to this than I had planned. I thought I would start off with routine. It makes the biggest difference here. With out it ugh! We have been pretty off, trying to get into a new routine, it shows. I have got to get back to it. I keep a large calander and several white boards, we all also have what we refer to as out chore boards
I rotate chores on the chore boards, every one knows what their job is. We rotate every 2 weeks for Boo, and weekly for the others. The rotation is different for the kids because Boo likes 2 weeks on a chore, he does better that way, the others do awesome for 1 week on a chore, after that week the work quality goes down hill! So we rotate, they dont get bored and we do better. I used to break it up by full rooms, but the little kids need chores also, so I have the chores split by room, and a few things smaller that the small kids can do. They will help an older kid also. We are talking about changing it and going back to the way we divided them a couple years ago, they liked it. Normally I also have a sheet in each room that specifies each thing to be done, then there is no question, no saying "I did not know" I have not put them up since our move, I need to get them up. I am running into a few things not being done as good as they should. My kids are very visual, if they see it, read it specifically they do better, they retain it more, they process it better, they can carry out whatever it is they are to do. It also stays with them more for what they are to do.
Our white boards keep our daily routine, the times- from wake up to sleep time. It is very specific. The kids know what time to expect to wake up, what time for school, chores, lunch, bed, bath, shower, everything. Its on a white board because it changes at times. If tomorrow we are going somewhere I write it in, it is fit into the schedule. I can go over the schedule letting them know what to expect. They can look at it and know what to do, free time, lunch, you name it. I unfortunately have not been doing good at the schedule. It shows. Kids, even adults with AS, or autism do so much better when they have a routine and stay with it. Straying from it sets them off, it can cause from a little attitude, total confusion, rage, not being able to function and do what needs done. The reason for our chore boards is so they know whats expected of them. One thing that has frustrated me over the years is Aspies are so much creatures of structure, routine and dont change things up that if Boo or Sir N are assigned a certain chore and I have another child do their chore, or ask them to do another chore it is a major issue! I have learned at times wording can get it done, other times not happening. I am very specific on it for that reason. Boo hasgarbage- full time. He is big enough, tall enough, no matter how heavy he can get it in the can. if another child has garbage and I need him to take it out it can lead to problems. So it was easier to just have him on garbage full time. He is usually good about it, if he gets to a point that he needs a break from it I assign it to another child for a week, letting him know if its a big bag he still has to do it, it is his chore.
I have tried to make it a point to stay with the routine, but as I have done this I always make sure to let them know sometimes things happen, life changes, we may have an unexpected illness, fun day out, park trip, doc app, visitors, things happen. Expect the unexpected. It does not end the unease when things change but it does help.This week end my brother and his family came. We saw Aunt E and kids in Dec 2006, and Uncle R in I think 2003, maybe 2004, not sure. So its been a while. They have 4 kids. So suddenly its 6 more people in the house. Now I had to be careful not to say anything to soon, it causes anxiety thats horrid, but let them know also to prepare them. Sir N has not learned to adapt even as well as Boo yet. Boo does not interact well at times. When he is feeling uncomfortable, unsure, crowded, and new things are around him he can get obnoxious. Unfortunately people do not understand, and often even when trying to explain they still dont get it. I have read up enough, worked with the therapists, and other people enough to know what to expect. People see an attitude they assume is the norm. It can be frustrating. I can usually pull him aside, point it out, we talk and he will regroup. This week end he did not get much chance to re group. I know we were already off routine when they arrived, we have been struggling to stay with it for a while. So there are already some issues happening, they increased for the visit. It can get old explaining, especially when they still dont get it.
So if you have a child in the spectrum, stay with the routine if possible, but still try to teach them part of the routine can be change. It helps with the change some.
Also keep your expectations on the childs abilities. Not some other kids abilities, your childs. There may be some things they can do that are "age appropriate" but at other things they may not be able to. Some times its a processing thing, in their thinking. Boo can not/does not think things through the same as other 15 year olds. It is not possible.
I rotate chores on the chore boards, every one knows what their job is. We rotate every 2 weeks for Boo, and weekly for the others. The rotation is different for the kids because Boo likes 2 weeks on a chore, he does better that way, the others do awesome for 1 week on a chore, after that week the work quality goes down hill! So we rotate, they dont get bored and we do better. I used to break it up by full rooms, but the little kids need chores also, so I have the chores split by room, and a few things smaller that the small kids can do. They will help an older kid also. We are talking about changing it and going back to the way we divided them a couple years ago, they liked it. Normally I also have a sheet in each room that specifies each thing to be done, then there is no question, no saying "I did not know" I have not put them up since our move, I need to get them up. I am running into a few things not being done as good as they should. My kids are very visual, if they see it, read it specifically they do better, they retain it more, they process it better, they can carry out whatever it is they are to do. It also stays with them more for what they are to do.
Our white boards keep our daily routine, the times- from wake up to sleep time. It is very specific. The kids know what time to expect to wake up, what time for school, chores, lunch, bed, bath, shower, everything. Its on a white board because it changes at times. If tomorrow we are going somewhere I write it in, it is fit into the schedule. I can go over the schedule letting them know what to expect. They can look at it and know what to do, free time, lunch, you name it. I unfortunately have not been doing good at the schedule. It shows. Kids, even adults with AS, or autism do so much better when they have a routine and stay with it. Straying from it sets them off, it can cause from a little attitude, total confusion, rage, not being able to function and do what needs done. The reason for our chore boards is so they know whats expected of them. One thing that has frustrated me over the years is Aspies are so much creatures of structure, routine and dont change things up that if Boo or Sir N are assigned a certain chore and I have another child do their chore, or ask them to do another chore it is a major issue! I have learned at times wording can get it done, other times not happening. I am very specific on it for that reason. Boo hasgarbage- full time. He is big enough, tall enough, no matter how heavy he can get it in the can. if another child has garbage and I need him to take it out it can lead to problems. So it was easier to just have him on garbage full time. He is usually good about it, if he gets to a point that he needs a break from it I assign it to another child for a week, letting him know if its a big bag he still has to do it, it is his chore.
I have tried to make it a point to stay with the routine, but as I have done this I always make sure to let them know sometimes things happen, life changes, we may have an unexpected illness, fun day out, park trip, doc app, visitors, things happen. Expect the unexpected. It does not end the unease when things change but it does help.This week end my brother and his family came. We saw Aunt E and kids in Dec 2006, and Uncle R in I think 2003, maybe 2004, not sure. So its been a while. They have 4 kids. So suddenly its 6 more people in the house. Now I had to be careful not to say anything to soon, it causes anxiety thats horrid, but let them know also to prepare them. Sir N has not learned to adapt even as well as Boo yet. Boo does not interact well at times. When he is feeling uncomfortable, unsure, crowded, and new things are around him he can get obnoxious. Unfortunately people do not understand, and often even when trying to explain they still dont get it. I have read up enough, worked with the therapists, and other people enough to know what to expect. People see an attitude they assume is the norm. It can be frustrating. I can usually pull him aside, point it out, we talk and he will regroup. This week end he did not get much chance to re group. I know we were already off routine when they arrived, we have been struggling to stay with it for a while. So there are already some issues happening, they increased for the visit. It can get old explaining, especially when they still dont get it.
So if you have a child in the spectrum, stay with the routine if possible, but still try to teach them part of the routine can be change. It helps with the change some.
Also keep your expectations on the childs abilities. Not some other kids abilities, your childs. There may be some things they can do that are "age appropriate" but at other things they may not be able to. Some times its a processing thing, in their thinking. Boo can not/does not think things through the same as other 15 year olds. It is not possible.
Tuesday, May 12, 2009
how it started?
So this is the big long intro, sit down pull up a comfy chair!
Ok maybe not so bad, about 2000 or so I was told someone I knew had a child recently diagnosed with autism. I really knew nothing at the time. I decided if I was going to be around the maybe I should learn. At this time my children were already working with therapists and docs for various reasons. One had mentioned autism to me about my oldest, I shot that down so fast it was unreal! My knowledge at the time was limited, only having been around a few autistic people, and they were the low functioning. I was not willing to even think about it. (kick self now)
So I started my reading. I was sent an email describing aspergers, and it was like reading about my son! I thought " who knows us, who sat and watched and wrote?" Creepy! So I read more and more and more. I started to see my son n many things I read. I started to apply things I read that worked for autistic and aspergers children, and they worked! When he constantly asked if it was time for lunch, bout drove me crazy doing it, I bought him a watch, i wrote out our daily schedule, hung it on the wall and showed him what time we had lunch, he did not ask again, unless I change lunch and forget to tell him. Many other things happened. A few years went by, my learning, reading and applying. Still I did not talk to a doctor about my suspicions. Eventually he was weaned off meds, and doing ok with out, as long as I stuck to the routine. Eventually I did seek a doc, bring up concerns and he was diagnosed. He does see a therapist but is currently not on meds. I work hard to keep a schedule. We have white boards all over, we have chore boards up, to make sure every one knows what everyone should be doing.
At this time I have a daughter with bipolar, ocd and possible did, 2 sons aspergers, a dd with severe anxiety disorders, another son with depression and adhd, me- anxiety disorders and some physical health issues. They all keep me busy. I am not going to go into detail in one long post. I am going to tell over a few posts different things we have done, and do now that work for us. Oh ya one asperger son also has tourettes, and the other has a not yet narrowed down tic disorder.
So for now here is our intro and from here on out we will be referred to as
Nanna- bipolar, ocd, possible did
boo- aspergers, tourettes
bubba- depression, adhd
loo- anxiety disorders and depression, ocd
sir n- aspergers tic disorder
chubby- hmm just a cutie for now
baby E- adorable and at this time not dx of any kind
mom- me! anxiety disorders, fibromyalgia, arthritis, pelvic/hip issues caused by ham string issues, thyroid and adrenal
So for now soak that in and I'll slowly add. In the mean time comment, read through the links.
Ok maybe not so bad, about 2000 or so I was told someone I knew had a child recently diagnosed with autism. I really knew nothing at the time. I decided if I was going to be around the maybe I should learn. At this time my children were already working with therapists and docs for various reasons. One had mentioned autism to me about my oldest, I shot that down so fast it was unreal! My knowledge at the time was limited, only having been around a few autistic people, and they were the low functioning. I was not willing to even think about it. (kick self now)
So I started my reading. I was sent an email describing aspergers, and it was like reading about my son! I thought " who knows us, who sat and watched and wrote?" Creepy! So I read more and more and more. I started to see my son n many things I read. I started to apply things I read that worked for autistic and aspergers children, and they worked! When he constantly asked if it was time for lunch, bout drove me crazy doing it, I bought him a watch, i wrote out our daily schedule, hung it on the wall and showed him what time we had lunch, he did not ask again, unless I change lunch and forget to tell him. Many other things happened. A few years went by, my learning, reading and applying. Still I did not talk to a doctor about my suspicions. Eventually he was weaned off meds, and doing ok with out, as long as I stuck to the routine. Eventually I did seek a doc, bring up concerns and he was diagnosed. He does see a therapist but is currently not on meds. I work hard to keep a schedule. We have white boards all over, we have chore boards up, to make sure every one knows what everyone should be doing.
At this time I have a daughter with bipolar, ocd and possible did, 2 sons aspergers, a dd with severe anxiety disorders, another son with depression and adhd, me- anxiety disorders and some physical health issues. They all keep me busy. I am not going to go into detail in one long post. I am going to tell over a few posts different things we have done, and do now that work for us. Oh ya one asperger son also has tourettes, and the other has a not yet narrowed down tic disorder.
So for now here is our intro and from here on out we will be referred to as
Nanna- bipolar, ocd, possible did
boo- aspergers, tourettes
bubba- depression, adhd
loo- anxiety disorders and depression, ocd
sir n- aspergers tic disorder
chubby- hmm just a cutie for now
baby E- adorable and at this time not dx of any kind
mom- me! anxiety disorders, fibromyalgia, arthritis, pelvic/hip issues caused by ham string issues, thyroid and adrenal
So for now soak that in and I'll slowly add. In the mean time comment, read through the links.
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