Any Change can make a difference in our kids lives. Actually that could apply to typical children as well---My point is, how we as "somewhat typical" people often times don't have the keen sense to detect that a mild change of any kind can and probably will make a difference to our kids. That means we will see behaviors, emotions and actions that sometimes we wonder "where the hell it came from" only to discover at a later time that it was the disruption of a schedule, routine or pattern that's set off the series of unfortunate events!
As far back as elementary school I remember situations where I was summoned to the school because Dak was having a problem and they -- the school staff-- could not figure out what set him off . I would arrive only to find that they had changed the class routine, or someone came in with blazing red hair after they had been a brunette the whole school year, or they had equipment on the school campus that emitted noises that most of us would just filter out or ignore .
Gee ya think??? My kid has Autism-- that means that he has a routine and structure and anxiety and when that is disrupted it causes "static" in his head which in turn triggers behavior.
I have found that even something as subtle as different paint or a new carpet; things we may not even take notice of " can really cause the mojo to be screwed up". In fact I found that putting Dak into a different exam room for the doctor often caused him to get "squirel-ly". One perfect example was I got a call one day where Dakota was off the charts running around the room knocking books off the shelves and tearing into everything. I got a call that the staff was at their witts end cuz they could not figure out what was going on. Of course I ran right to school only to find that the class had cleared out.Only the teacher and Dakota remained in the room. By the time I arrived he had calmed quite a bit but was still circling the room disturbed about something. As the teacher tried to explain that nothing was different and nothing had changed I noticed Dak revisiting a certain area in the class --he kept returning to one specific spot in the 10 minutes or so that I was talking to the teacher. I walked over to this area only to find a 6 foot long piece of masking tape stuck on the carpet. I said "Theres tape on the floor over here". The teacher and aide[who had just returned to the room}replied yes we put it there to do some testing of the students -- I just looked at them-- they drew blank-- I said after a brief pause--- "And when did you put this tape on the rug?" "Oh today just a little while ago" again I said "And when did you put this tape on the rug?" "Earlier this after noon" they replied. And I said "Soooooooooooooooo" They still gave me a blank stare---
THEY DID NOT GET IT---So I said"before Dakota started his behavior?"
"Well yes" THEY STILL DID NOT UNDERSTAND-- how could a piece of tape on the carpet cause that reaction????? I simply slapped my forehead and said "I should have had a V-8" -- these are what I call my V-8 moments. When you finally solve the the puzzle. I have to admit they still were in awe that something that simple could cause such a reaction. People who had cared for Dakota everyday for several years, people who knew my kid pretty well still had no clue that something that simple would make such a big difference.
Change-- colors of walls, different carpet, new location for the same person, same medication in a different bottle, a smell or scent, a change of perfume or after shave, lighting--if you go to the same place during a different time of the
day,even the bus they ride on--the interior is brown on some buses and green on others- or the tires and rims are different or the number of the bus, not to mention a different driver or going a different way-- I could go on and on!
My point is our kids can adapt but they need help--it plays into the anxiety. {Anxiety:the fear of whats to come}
Preparing them, telling them; well we are going to see Mr.so and so but he moved to a new place or we have to go to a certain place but its a different day or time-- Helping them to combat their anxiety helps ----Anything you can do to prepare them can potentially mean the difference between a successful trip and a disaster.
Sunday, March 22, 2009
Saturday, March 21, 2009
4 am and just going to bed-----ARGGG
Last night was one of those nights----
First of all Dakota struggles with bedtime in that he goes to bed when the TV show he wants to watch goes off the air verses going to bed when he is tired-- I have spoken to him over and over to explain to him that you can take naps, that you can dose off and wake up later, that you go to sleep when your body tells you that it is tired----Some how this concept does not translate to him YET!
Another problem we are having at bedtime is that he does not fall asleep readily and has used this time to employ another destructive habit which is twisting and pulling his hair --yes that's right we are still battling the hair pulling{There are several other excerpts with references to this behavior which is about the drive me out of my mind}
By waiting until the lights are off he can engage in this behavior without anyone being able to see him and try to interrupt and redirect the behavior.AND the bigger problem is that it stimulates him so it takes even longer for him to fall asleep.
SO by 1:35 am he was finally ready to try to go to sleep -- I lolly gagged around a little because I knew he was not going to turn off the lights and just fall fast asleep. Somehow he decided that he was going to make a final stop in the bathroom--Not just to relieve his bladder --IF YOU KNOW WHAT I MEAN!
After a substantial time in the bathroom I hear him call for assistance. I arrive to find "small deposits" everywhere.{For the record this is totally out of character or behavior --we have not had this type of incident up until a minor one about a week ago. At that time I explained to him the importance of waiting until everything not only exited his body but made it into the toilet before standing up and calling for help.}
Needless to say I was more than upset. I told him that he was going to clean up. I did not mind helping when he was sick and had mistakes but it was another thing to expect my assistance when was just being careless.
He was not happy with me but I knew that I had to drive home the idea that this was not acceptable and at this point in time that he had not been engaging in this behavior before so this was no time to start.I got the Clorox wipes and helped him "motor through it all the while he was pissed off at me because I was making him do something he "expected" me to do. This continued on as I had him but the wipes in the shower as I did not want him to flush them down the toilet and cause another problem. after finally getting him to finish his cleanup duty I had him get in the shower because his bottom was altogether another issue.
Once he was in the shower I explained that he had one more duty which was to pick up the wipes and put them in a container so I could throw them out----This became the second battle of the war that was waged last night! Hr absolutely refused to cooperate. He would not pick the wipes up. So I told him that I would not help him complete his shower until he do so. He remained in the shower the better part of one hour with me asking him every 5 minutes if he was ready to help me.Finally after the shower curtain came down and he realized that I was not budging and giving him many options including using a rubber glove or even using his foot to slide them into the container he acquiesced.
It was a hard thing to do and I found myself questioning my decision to take on this battle but in the long run I think it was the right choice---
One of the biggest indicators in Autism is if you see your child regressing. That usually signals many things most especially the end of the learning process so in order to push ahead and continue to hold out hope for more improvement you have to continue to stretch and challenge you kids. I have seen growth in Dakota as an ongoing process and at this point I am not ready to throw in the towel.
I always say as long as I see improvement -- even baby steps I will hold out hope!
First of all Dakota struggles with bedtime in that he goes to bed when the TV show he wants to watch goes off the air verses going to bed when he is tired-- I have spoken to him over and over to explain to him that you can take naps, that you can dose off and wake up later, that you go to sleep when your body tells you that it is tired----Some how this concept does not translate to him YET!
Another problem we are having at bedtime is that he does not fall asleep readily and has used this time to employ another destructive habit which is twisting and pulling his hair --yes that's right we are still battling the hair pulling{There are several other excerpts with references to this behavior which is about the drive me out of my mind}
By waiting until the lights are off he can engage in this behavior without anyone being able to see him and try to interrupt and redirect the behavior.AND the bigger problem is that it stimulates him so it takes even longer for him to fall asleep.
SO by 1:35 am he was finally ready to try to go to sleep -- I lolly gagged around a little because I knew he was not going to turn off the lights and just fall fast asleep. Somehow he decided that he was going to make a final stop in the bathroom--Not just to relieve his bladder --IF YOU KNOW WHAT I MEAN!
After a substantial time in the bathroom I hear him call for assistance. I arrive to find "small deposits" everywhere.{For the record this is totally out of character or behavior --we have not had this type of incident up until a minor one about a week ago. At that time I explained to him the importance of waiting until everything not only exited his body but made it into the toilet before standing up and calling for help.}
Needless to say I was more than upset. I told him that he was going to clean up. I did not mind helping when he was sick and had mistakes but it was another thing to expect my assistance when was just being careless.
He was not happy with me but I knew that I had to drive home the idea that this was not acceptable and at this point in time that he had not been engaging in this behavior before so this was no time to start.I got the Clorox wipes and helped him "motor through it all the while he was pissed off at me because I was making him do something he "expected" me to do. This continued on as I had him but the wipes in the shower as I did not want him to flush them down the toilet and cause another problem. after finally getting him to finish his cleanup duty I had him get in the shower because his bottom was altogether another issue.
Once he was in the shower I explained that he had one more duty which was to pick up the wipes and put them in a container so I could throw them out----This became the second battle of the war that was waged last night! Hr absolutely refused to cooperate. He would not pick the wipes up. So I told him that I would not help him complete his shower until he do so. He remained in the shower the better part of one hour with me asking him every 5 minutes if he was ready to help me.Finally after the shower curtain came down and he realized that I was not budging and giving him many options including using a rubber glove or even using his foot to slide them into the container he acquiesced.
It was a hard thing to do and I found myself questioning my decision to take on this battle but in the long run I think it was the right choice---
One of the biggest indicators in Autism is if you see your child regressing. That usually signals many things most especially the end of the learning process so in order to push ahead and continue to hold out hope for more improvement you have to continue to stretch and challenge you kids. I have seen growth in Dakota as an ongoing process and at this point I am not ready to throw in the towel.
I always say as long as I see improvement -- even baby steps I will hold out hope!
The Special Olympics fiasco
I know there has been some discussion recently about the "remark" or reference that was made by the President on the Jay Leno Tonight Show--- and it apprears as if the country is split down the middle on whether it was approriate or not ... as a mother of a kid that has many special challenges in his life this is my take----
Should there have been a reference to "Special Olympics" probably not but in a completely "included" society there would not be Special Olympics anyway--- all altheletes of all abilities would compete all at the same time == perhaps in different classes of performance but we would not even have SEPARATE games -- Thats how the real world should be; complete inclusion. But lets all get real here, we as parents want our kids to suceeed and have the feeling of success just as others in the typical community so things are "agumented" to accomodate accomplishment-- THATS OK!
But when a person is having a casual, off the cuff, nonscripted conversation and makes a reference to something as "less than"by referring to the Special Olympics; while the cool host of the show is obviously teasing him about his performance or lack thereof ;should not be chastised.
We have to have the ability ourselves to discern between vicious mean remarks and ones that are clearly just a mistake. On one of the web groups I subcribe to a mother was really upset about this coment and well as another "media sound bite" that made a reference to the "short bus" being the ones that our kids usually are assigned to. I completely understand her feelings by the same token we have to let some things go
this was my response to her:
I respect your opinion and believe you have every right to take issue with disparaging remarks that refer to people who have the extra challenges in their lives. I also believe that there should be every opportunity afforded special needs, disabled or handicapped people that is available to the typical community.
By the same token, after being a part of this challenged community > for over 20 years I have come to realize that all of us cannot take issue with every word from every person as hateful, distasteful, or mean. I know that we have to start by leading as examples to our kids. We cannot be hateful or spiteful or even verbally abusive towards others and then surprised when our kids regurgitate the same sentiments.
I have also discovered that we have enough on our plate trying to get those, who have the fate of out children's futures in their hands, the ability to understand how much promise our kids possess without taking on the whole world. We are super sensitive to remarks and we are on a quest to educate everyone.We also have to get to the point where we recognize that not everyone will be on board every time and that's OK--BECAUSE when it means fighting for our kid we will and when it doesn't affect us we have to let it go...
In short its not about accepting what you don't agree with its more about picking your battles strategically and objecting when it will make a difference for your child or your family.
Well I guess that's all I have to say on this subject-- I hope that it will provoke your thought process and perhaps allow you to look at things a little bit differently!
Should there have been a reference to "Special Olympics" probably not but in a completely "included" society there would not be Special Olympics anyway--- all altheletes of all abilities would compete all at the same time == perhaps in different classes of performance but we would not even have SEPARATE games -- Thats how the real world should be; complete inclusion. But lets all get real here, we as parents want our kids to suceeed and have the feeling of success just as others in the typical community so things are "agumented" to accomodate accomplishment-- THATS OK!
But when a person is having a casual, off the cuff, nonscripted conversation and makes a reference to something as "less than"by referring to the Special Olympics; while the cool host of the show is obviously teasing him about his performance or lack thereof ;should not be chastised.
We have to have the ability ourselves to discern between vicious mean remarks and ones that are clearly just a mistake. On one of the web groups I subcribe to a mother was really upset about this coment and well as another "media sound bite" that made a reference to the "short bus" being the ones that our kids usually are assigned to. I completely understand her feelings by the same token we have to let some things go
this was my response to her:
I respect your opinion and believe you have every right to take issue with disparaging remarks that refer to people who have the extra challenges in their lives. I also believe that there should be every opportunity afforded special needs, disabled or handicapped people that is available to the typical community.
By the same token, after being a part of this challenged community > for over 20 years I have come to realize that all of us cannot take issue with every word from every person as hateful, distasteful, or mean. I know that we have to start by leading as examples to our kids. We cannot be hateful or spiteful or even verbally abusive towards others and then surprised when our kids regurgitate the same sentiments.
I have also discovered that we have enough on our plate trying to get those, who have the fate of out children's futures in their hands, the ability to understand how much promise our kids possess without taking on the whole world. We are super sensitive to remarks and we are on a quest to educate everyone.We also have to get to the point where we recognize that not everyone will be on board every time and that's OK--BECAUSE when it means fighting for our kid we will and when it doesn't affect us we have to let it go...
In short its not about accepting what you don't agree with its more about picking your battles strategically and objecting when it will make a difference for your child or your family.
Well I guess that's all I have to say on this subject-- I hope that it will provoke your thought process and perhaps allow you to look at things a little bit differently!
Sunday, March 15, 2009
The Rollercoaster!
To say that this journey has its ups and downs is a full blown Lie---It is the biggest hair-raising "E" ticket ride you can imagine. Never mind that you go through so many episodes of discovery and experimentation but the emotions and feelings are sometimes so overwhelming that you will never be convinced that ANYONE could ever feel the same way!
I am not trying to say that others do not go through their own troubles and problems. I am only saying that this disorder is so "ever-present" that often it becomes exhausting trying to keep up with it! And I do mean "IT"!
AS you can probably tell, I am at a point where I am really worn down and the crappy thing is I cannot even pin point exactly what is getting to me .That is pretty bad.
When you are a caregiver of anyone who needs help whether it is aged,recuperating or disabled there are always moments when you wonder if you will ever get passed the moment you are in that is giving you so much angst.It usually does pass and a day goes by and you are over it--either a good sleep or some respite or just something good happens with the person you are caring for and that is all you need. The frustration or emotion becomes history--Tommorrow is another day!
BUT occasionally you hit a point in the road and for some reason you just cannot shake it off----I think it comes when someone asks you whats wrong or how can I help and you have no reply. Its like being lost in your own thoughts and not having the ability to explain what is troubling you.
Perhaps in my personal case it may just be the longevity of the journey. I know full well this will be my path for the rest of my life. I have no reservations about that and I truly hope that God will be kind enough to keep me here long enough to get much much more done.Upon that statement it could be melancholy.I know one thing that as long as i tread this earth I will forever be advocating and pursuing opportunities for Dakota. Sometimes it feels like you are the Autistic one, banging your head against the wall, trying to convince others how and why your child deserves so much more than society or the community wants to offer.That in and of itself is enough to warrant these emotions.
I cannot tell you how many times I have read web postings from other caregivers about the emotions and the feelings that overwhelm all us at some point.I truly believe that although there is an innate responsibility to care for something you brought into this world there is even more frustration when you cannot get another humane being who is supposed to be helping you or supporting you and your child to understand how they are so blind or detached or stupid{for lack or a better word} about what they are convinced is a good thing when it is so so WRONG. And then they have the audacity to make you feel like you are asking to much of society ----What ??? to accept my child, another human being as an equal part of the community.
It wears on you and it tears you up and you want to just scream don't you get it??? And then the most horrific thought crosses your mind-- what is going to happen when I am no longer here to make sure these idiots don't do these crappy things??? I do not like the answer-- He will be lost in the crowd . Decisions will be made that demean and reduce him as a person and I hate thinking these things-BUT I CANNOT HELP IT1
Please someone tell someone else and have that someone else tell another person--we have to make it right for every one and these kids do not have the ability to stick up for themselves.Whats even more gut wrenching is that when these kids do try to tell us or anyone that something is not right they us a behavior that is not accepted or understood by even the best of us who live with Autism so they are then punished even more because no one takes the time to realize that they are using what voice they have which is usually a behavior that needs de-coding. No; people shut down and only see the actions; judge and react to the inappropriate-ness.
Oh how I convince myself more and more it is a lost cause and this all falls on deaf ears-- I can only hope that somehow this cyber babble will eventually help others to further understand and appreciate our kids.
Is it any wonder I am in a funk that I cannot define? Oh there are days and they pass but its like anything else you just put one foot in front of the other and take it day by day. When you get like this;one can only hope that after you lay your head down for the night that when the next day comes it is better.If its not the next day then it will be the day after that!
My quest continues and I work thru these funky feelings by venting on this damn machine -- I guess my therapy is the hope that someone else may benefit from my drivel. Tommorrow is a clean slate and perhaps I will be closer to figuring out whats next?
I am not trying to say that others do not go through their own troubles and problems. I am only saying that this disorder is so "ever-present" that often it becomes exhausting trying to keep up with it! And I do mean "IT"!
AS you can probably tell, I am at a point where I am really worn down and the crappy thing is I cannot even pin point exactly what is getting to me .That is pretty bad.
When you are a caregiver of anyone who needs help whether it is aged,recuperating or disabled there are always moments when you wonder if you will ever get passed the moment you are in that is giving you so much angst.It usually does pass and a day goes by and you are over it--either a good sleep or some respite or just something good happens with the person you are caring for and that is all you need. The frustration or emotion becomes history--Tommorrow is another day!
BUT occasionally you hit a point in the road and for some reason you just cannot shake it off----I think it comes when someone asks you whats wrong or how can I help and you have no reply. Its like being lost in your own thoughts and not having the ability to explain what is troubling you.
Perhaps in my personal case it may just be the longevity of the journey. I know full well this will be my path for the rest of my life. I have no reservations about that and I truly hope that God will be kind enough to keep me here long enough to get much much more done.Upon that statement it could be melancholy.I know one thing that as long as i tread this earth I will forever be advocating and pursuing opportunities for Dakota. Sometimes it feels like you are the Autistic one, banging your head against the wall, trying to convince others how and why your child deserves so much more than society or the community wants to offer.That in and of itself is enough to warrant these emotions.
I cannot tell you how many times I have read web postings from other caregivers about the emotions and the feelings that overwhelm all us at some point.I truly believe that although there is an innate responsibility to care for something you brought into this world there is even more frustration when you cannot get another humane being who is supposed to be helping you or supporting you and your child to understand how they are so blind or detached or stupid{for lack or a better word} about what they are convinced is a good thing when it is so so WRONG. And then they have the audacity to make you feel like you are asking to much of society ----What ??? to accept my child, another human being as an equal part of the community.
It wears on you and it tears you up and you want to just scream don't you get it??? And then the most horrific thought crosses your mind-- what is going to happen when I am no longer here to make sure these idiots don't do these crappy things??? I do not like the answer-- He will be lost in the crowd . Decisions will be made that demean and reduce him as a person and I hate thinking these things-BUT I CANNOT HELP IT1
Please someone tell someone else and have that someone else tell another person--we have to make it right for every one and these kids do not have the ability to stick up for themselves.Whats even more gut wrenching is that when these kids do try to tell us or anyone that something is not right they us a behavior that is not accepted or understood by even the best of us who live with Autism so they are then punished even more because no one takes the time to realize that they are using what voice they have which is usually a behavior that needs de-coding. No; people shut down and only see the actions; judge and react to the inappropriate-ness.
Oh how I convince myself more and more it is a lost cause and this all falls on deaf ears-- I can only hope that somehow this cyber babble will eventually help others to further understand and appreciate our kids.
Is it any wonder I am in a funk that I cannot define? Oh there are days and they pass but its like anything else you just put one foot in front of the other and take it day by day. When you get like this;one can only hope that after you lay your head down for the night that when the next day comes it is better.If its not the next day then it will be the day after that!
My quest continues and I work thru these funky feelings by venting on this damn machine -- I guess my therapy is the hope that someone else may benefit from my drivel. Tommorrow is a clean slate and perhaps I will be closer to figuring out whats next?
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