Many years ago I attended a program for Dakota where the parental advisor gave us an assignment-----
"I want you to create an "operational mannual" for your son or daughter." "Lets just say that we do not know the future and any one of us could go out and get killed, drop dead or end up in a hospital tommorrow." " Arent your children fragile enough without routine or schedule being disrrupted? If a parent was not there; could it cause your child to end up in a tail spin?"
Why allow their world to fall apart any worse than it would if your were not there? The assignement was to assemble information about your child so that a perfect stranger could pick up the pieces and TRY to make your child world OK without you.
My mannual developed a life of its own and is probably much more than necessary but heres what I tried to do: Paint a picture of my son and his daily weekly and monthly routine.I included Family contacts. support people {ones that were in his life} diagnosis, prescrpitions,medical history and background,Daily routines-- bathing,toileting, eating, bedtime---Eductional back ground including schools and teachers that did well with him and activities he excelled in,certain ways he was at home, what TV shows he likes and activities he did and any special little thing that set him apart from typical. Like the fact that he does not understand how to blow his nose or that he does not swallow pills. Additionally I included 3 or 4 articles about Autism and included network info about different no profits that could offer info,support or help.I also added info about places he liked to go to and how he did in each environment. I put hints in there about things that seem to trigger Dakota and non preferred tasks .
I guess my point is that every kids world would be turned upside down if their parent wasnt there tommorrow-- but dont we owe it to these kids to have the best support they can get. All this is in your head and unless its is written down NO ONE KNOWS IT! and your child probably cannot express it--
So think about it. Make an "Operational Mannual" and hope you never have to use it---You can even use a your computer and burn it on to a CD-- I utilized a notebook and included pictures and magazine articles plus reference material like pamphelets so that somone has an idea of where to start.
Thursday, June 3, 2010
Thursday, May 27, 2010
How do WE prepare??
It's natural to want to protect any child . It seems to me that most parents and caregivers of Autistic children are even more aware and concerned about this subject. Not just because of the disorder but the nature of Autism makes the caregiver anticipate situations that a typical person may be able to process and handle whereas an Autistic one would not.
Now I can list hundereds of scenarios but the one that is on the top of my list right now is how to inform or train for unforseen situations. We work and work on sameness and routine and typical everyday occurances but what IF?????
Just picture in your mind your are home in the morning and your spouse has already gone to work. You and your child are home alone . The child is still asleep as you prepare to start the morning; you walk out to the garage to take out a bag of trash or to put a few clothes in the wash and you trip hit yout head and you are unconscience.
Your child wakes up only to see Mommy laying on the floor knocked out. How will that child react. Now some of our kids would be keenly aware and would call for help or react approprioately. Many would not.
What steps can be taken to try to at least plan for something you hope will never happen? Of course there are Social Stories and the constant lament to them about dialing 911 in an emergency but how do we know they will?
Guess the answer is; we dont. But dont you think that its better to think about it now and put something in place rather than scoff it off and hope it never happens? The simple fact is WE DONT KNOW - anyone of us could step off a curb and get hit today-- We JUST DONT KNOW!I have been hearlded as the "Queen of Procrastination" But in this instance I feel I owe Dakota some kind of plan Its time for me to buckle down and find some solutions.
You know its not just someone passing out or the child finding themsleves alone, there could be a fire or an earthquake, they could come and evacuate the neighborhood, Who knows???. I dont think any of us talk enough to our kids about it . We have so many other things to deal with; its just easier to set that one to the side and say - OH someday--
Its also another step towards some independent living skill. How can you ever allow your child the ability to stay at home even for short periods of time if you dont have a plan for these emergencies. I dont think many of us ever think our kids will be alone much but even the smallest amout of time is healthy for them and a step towards some kind of independence down the road.
I do use some construction paper and drawings or clippings from magazines to help with some situations in the house -- for instance instructions for showering-- although he does not seem to follow them very closely, he is aware its there and we read it occassionally. Something similar with instructions for calling for help could be possible and I have thought a lot about something like a "life alert" signaling device similar to what some seniors have ---
I know I certainly dont have all the answers and only a few ideas but I know that its another chapter that needs to be concluded.
So, I put the questions out to all of you and hope I might get some answers;
"How do we prepare?"
Now I can list hundereds of scenarios but the one that is on the top of my list right now is how to inform or train for unforseen situations. We work and work on sameness and routine and typical everyday occurances but what IF?????
Just picture in your mind your are home in the morning and your spouse has already gone to work. You and your child are home alone . The child is still asleep as you prepare to start the morning; you walk out to the garage to take out a bag of trash or to put a few clothes in the wash and you trip hit yout head and you are unconscience.
Your child wakes up only to see Mommy laying on the floor knocked out. How will that child react. Now some of our kids would be keenly aware and would call for help or react approprioately. Many would not.
What steps can be taken to try to at least plan for something you hope will never happen? Of course there are Social Stories and the constant lament to them about dialing 911 in an emergency but how do we know they will?
Guess the answer is; we dont. But dont you think that its better to think about it now and put something in place rather than scoff it off and hope it never happens? The simple fact is WE DONT KNOW - anyone of us could step off a curb and get hit today-- We JUST DONT KNOW!I have been hearlded as the "Queen of Procrastination" But in this instance I feel I owe Dakota some kind of plan Its time for me to buckle down and find some solutions.
You know its not just someone passing out or the child finding themsleves alone, there could be a fire or an earthquake, they could come and evacuate the neighborhood, Who knows???. I dont think any of us talk enough to our kids about it . We have so many other things to deal with; its just easier to set that one to the side and say - OH someday--
Its also another step towards some independent living skill. How can you ever allow your child the ability to stay at home even for short periods of time if you dont have a plan for these emergencies. I dont think many of us ever think our kids will be alone much but even the smallest amout of time is healthy for them and a step towards some kind of independence down the road.
I do use some construction paper and drawings or clippings from magazines to help with some situations in the house -- for instance instructions for showering-- although he does not seem to follow them very closely, he is aware its there and we read it occassionally. Something similar with instructions for calling for help could be possible and I have thought a lot about something like a "life alert" signaling device similar to what some seniors have ---
I know I certainly dont have all the answers and only a few ideas but I know that its another chapter that needs to be concluded.
So, I put the questions out to all of you and hope I might get some answers;
"How do we prepare?"
Saturday, May 22, 2010
Wishes for an easier "world"
Well there are things that seem to be a bit better but boy when the "Shit hits the fan" it comes in buckets!!!
I am finding that there are bigger gaps in the occurance of the behaviors but the intensitiy seems worse. All of the being said its really a matter of keeping the right attitude and not giving in or up!
Thats what this post is about--We know that Autistic individuals are missing "the social chip" so they are always replicating what they see in others.It is absolutely imperative that you remember that the example you set will be the example to you see in your child-- I struggle with keeping my composure at all costs and believe me that is a feat!
When he "rages" it is all I can do to NOT REACT. I have decided that when these issues come up the worst thing I can do is model aggressive behavior back at him. These episodes seem seizure like which I have said before and I truly believe that he has no ability to control it or learn how to over come it. It seems more like he has to wait for it to pass. For that reason, I have to keep in mind that he does not need to spar with someone. Nor does he deserve some crazy maniac mother yelling to telling him to calm down or stop when he CANT! He needs some one to have their wits about them. Someone who will provide a safe environmant where he knows he is loved and protected and that its OK. That just because he is "off kilter" that he is not rejected or unloved by those who are caring for him.
To another end I also make a concerted effort in the rest of our world to be as
non-confrontationalas possible. For those of you who know me; know that this is a huge feat for me. I have a rather volatile relationship with my mother and I try not to display my frustration in front of my son because I know he will glom on to it. As well, my issues with Regional Center or the school districts and many other entities have created a "fighting spirit" in me but I have made a much more conscience effort to conduct business when he is not within earshot.It has become overwhelmingly obvious to me that when I talk about him or Autism or anything that has to do with his life he reacts. He is absolutely congnizant of what I am talking about and how I am handling it.AND he reacts usually in an undesirable way.
Its all a matter of what works in your home with your family and your child. Again this is just what I try to make work for us.
As you can tell these behaviors have consumed my journal recently. Only because thay have cropped up recently. I just cannot imagine how others deal with these things in their homes. I dont pretend to have answers I write because I hope it will help someone else get thru their issues.I write with the hope that someone can take something from me and make it easier in their world.
I am finding that there are bigger gaps in the occurance of the behaviors but the intensitiy seems worse. All of the being said its really a matter of keeping the right attitude and not giving in or up!
Thats what this post is about--We know that Autistic individuals are missing "the social chip" so they are always replicating what they see in others.It is absolutely imperative that you remember that the example you set will be the example to you see in your child-- I struggle with keeping my composure at all costs and believe me that is a feat!
When he "rages" it is all I can do to NOT REACT. I have decided that when these issues come up the worst thing I can do is model aggressive behavior back at him. These episodes seem seizure like which I have said before and I truly believe that he has no ability to control it or learn how to over come it. It seems more like he has to wait for it to pass. For that reason, I have to keep in mind that he does not need to spar with someone. Nor does he deserve some crazy maniac mother yelling to telling him to calm down or stop when he CANT! He needs some one to have their wits about them. Someone who will provide a safe environmant where he knows he is loved and protected and that its OK. That just because he is "off kilter" that he is not rejected or unloved by those who are caring for him.
To another end I also make a concerted effort in the rest of our world to be as
non-confrontationalas possible. For those of you who know me; know that this is a huge feat for me. I have a rather volatile relationship with my mother and I try not to display my frustration in front of my son because I know he will glom on to it. As well, my issues with Regional Center or the school districts and many other entities have created a "fighting spirit" in me but I have made a much more conscience effort to conduct business when he is not within earshot.It has become overwhelmingly obvious to me that when I talk about him or Autism or anything that has to do with his life he reacts. He is absolutely congnizant of what I am talking about and how I am handling it.AND he reacts usually in an undesirable way.
Its all a matter of what works in your home with your family and your child. Again this is just what I try to make work for us.
As you can tell these behaviors have consumed my journal recently. Only because thay have cropped up recently. I just cannot imagine how others deal with these things in their homes. I dont pretend to have answers I write because I hope it will help someone else get thru their issues.I write with the hope that someone can take something from me and make it easier in their world.
Sunday, May 2, 2010
Just thoughts----
I have not posted this past week because I wanted the Anthesis activity to remain on the top for those who visited from my posts on the web groups---
The past week had presented more challenges however I feel reluctantly optomistic. Although it seems that it may be meds that have helped; it is a bit of a relief if the new regiment works---
When you get pregnant the first thing that happens, EVERYONE is harping at you: "Dont Smoke, Dont Drink, Dont take Caffeine, Be sure to take your Vitamins--eliminate stress---- yada, yada, yada-- OK its all for the baby so he/she can have the best start in the world. Then you have the baby and there are complications and what is the first thing they do??? Start pumping drugs into them obviously to save the child but it just seems screwy-- Then there is always some woman who did not "obey" all the "rules" Lived recklessly while pregnant and has a perfectly normal Baby-- wheres the justice???
Then you find out that your child will have a disorder for the duration of his life and whats the answer- MORE DRUGS???? It goes against all that has been "preached " to you since pregnancy. The next observation is that this child has stuff going on in his head that he does NOT DESERVE to cope with--So you have to decide what is most important. For me it is His quality of life, his peace of mind, his functionality.
Without expounding on numerous strategies there are all kinds of things out there for Autistic Children and many of them are everything BUT medication. You explore all the alternatives and you pick and choose what seems to work for you your, child and your family. Some work, some dont. Some work for a while and then fizzle--All of our kids are different and different things work for different kids. Ultimately every kid will find his own niche-- but the caregiver has got to be keenly aware of what works and be willing to try different things till your find the right combination.
In our situation many things have not worked. Medication as a last result has seemed to be the most effective--- Dakota has really been going thru a rough patch since Christmas and I have been feeling really overwhelmed. He is growing into fullfledged adult and the hormonal surges are stronger than ever--Its a tough deal cuz Nature has delayed them developmentally but not physically AGAIN another thing that is not fair BUT it is what it is? He has developed this rage that comes on without notice and it snowballs very quickly. It makes me crazy cuz I most of the time I dont see it coming and I cannot figure out what triggers it. I feel so bad he has these "creepy crawlers" in his brain. I decided the meds he had been taking were no longer working soooooooooooooooooooo time to try something new.
Last weekend was the tipping point-- he had the ultimate meltdown . It tore my heart apart--- I had to try something and after much distress a decision was meds to try different meds----I am stll trying to "tweak" the right doseage but it seems like perhaps I may have found some relief for him.
Perhaps this is all boring and even redundant from previous posts but I feel like theres always that chance that someone who has never read me before will get something from this post. I guess the purpose of this post is to reirerate one of my "mantras" NEVER GIVE UP!
The past week had presented more challenges however I feel reluctantly optomistic. Although it seems that it may be meds that have helped; it is a bit of a relief if the new regiment works---
When you get pregnant the first thing that happens, EVERYONE is harping at you: "Dont Smoke, Dont Drink, Dont take Caffeine, Be sure to take your Vitamins--eliminate stress---- yada, yada, yada-- OK its all for the baby so he/she can have the best start in the world. Then you have the baby and there are complications and what is the first thing they do??? Start pumping drugs into them obviously to save the child but it just seems screwy-- Then there is always some woman who did not "obey" all the "rules" Lived recklessly while pregnant and has a perfectly normal Baby-- wheres the justice???
Then you find out that your child will have a disorder for the duration of his life and whats the answer- MORE DRUGS???? It goes against all that has been "preached " to you since pregnancy. The next observation is that this child has stuff going on in his head that he does NOT DESERVE to cope with--So you have to decide what is most important. For me it is His quality of life, his peace of mind, his functionality.
Without expounding on numerous strategies there are all kinds of things out there for Autistic Children and many of them are everything BUT medication. You explore all the alternatives and you pick and choose what seems to work for you your, child and your family. Some work, some dont. Some work for a while and then fizzle--All of our kids are different and different things work for different kids. Ultimately every kid will find his own niche-- but the caregiver has got to be keenly aware of what works and be willing to try different things till your find the right combination.
In our situation many things have not worked. Medication as a last result has seemed to be the most effective--- Dakota has really been going thru a rough patch since Christmas and I have been feeling really overwhelmed. He is growing into fullfledged adult and the hormonal surges are stronger than ever--Its a tough deal cuz Nature has delayed them developmentally but not physically AGAIN another thing that is not fair BUT it is what it is? He has developed this rage that comes on without notice and it snowballs very quickly. It makes me crazy cuz I most of the time I dont see it coming and I cannot figure out what triggers it. I feel so bad he has these "creepy crawlers" in his brain. I decided the meds he had been taking were no longer working soooooooooooooooooooo time to try something new.
Last weekend was the tipping point-- he had the ultimate meltdown . It tore my heart apart--- I had to try something and after much distress a decision was meds to try different meds----I am stll trying to "tweak" the right doseage but it seems like perhaps I may have found some relief for him.
Perhaps this is all boring and even redundant from previous posts but I feel like theres always that chance that someone who has never read me before will get something from this post. I guess the purpose of this post is to reirerate one of my "mantras" NEVER GIVE UP!
Sunday, April 18, 2010
Something besides Nagging!!!
One of the highlights in Dakotas life right now are the hours he gets to spend at the Anthesis Program.It is a very new program specifically for individuals transitioning from school to "the rest of their life".
It has only been up and running for a little over a year and its main purpose is to design and execute services to help our kids become one with their community--the neighborhood where they live. It is an extremely unique program that is desperately needed throughout
the Autism community.
This is one of their first fundraisers for the kids to get involved,to invite the general public to get to know our kids and to further promote its exsistance.The basic idea is that our kids are not the ones who "naturally" participate in sporting activities so we will bring the sporting activities and atheletes to them!
Please feel free to come down and participate.
Sunday, April 4, 2010
Just Cannot Figure it out.
It should be "Happy Easter"
For the most part every day; whether it is a holdiay or not, You have to find the happiness in the few minutes or hours that present themselves and FORGET the stress or behavior that will come and go. One thing I have noticed is that our kids seem to be impervious their behavior and how it affects those around them.Another thing is that they are also unbelievablely resilient to behavior--At least that seems to be the case with Dakota.
As I have said before that it seems as if the recent behavior patterns are almost siezure like. They come and go in short spans of time and it seems as if Dakota almost has an "out of Body" experience. Also, it is very apparent that the less confrontation the quicker the situation seems to "blow over". Moreover the most amazing thing is this resilience I have witnessed with Dakota---After a very short period of time, it is as if the behavior never happened. He is smiling and sometimes laughing and literally untouched by this episode that was so intense its enough to make my head explode. That makes me happy he can go through that and come back to a calm peaceful place. What I take issue with is there no learning place in all of that. Hence the nature of the beast! How can one learn if it becomes a "non issue"?
Yesterday was one of those days!
Went were motoring through the regular event of the day when while we were out in the car he flipped out----Screaming and yelling and grabbing my arm calling me names as we rounded the corner heading for home he clicked off his seatbelt and opened the door while the car was in motion-- LUckily I was about 30 to 40 feet from a clear driveway so I swung into the first parking spot as he piled out of the car yelling at the top of his lungs F---this F---that-- he walked down to the sidewalk and told me he wasnt getting back into the car--- I knew I could not "make" him get back in so I had to let it play out---Once he got down to the sidewalk I think he realized that he didnt know which way to go so after 2 or 3 minutes he finally relented and got back in the car -- I told him if he wants to blow up do it at home.
WE made a quick trip to the house and he retreated to the nedroom and finished out his fit. I have found that if I leave him alone, it will fizzle out faster. I went about my business in the kitchen and eventually he came around----
To the minute of writing this I still DO NOT know what caused this behavior and that is the most frustrating--- If I could see the antecedant perhaps I could avoid these incidents but right now
I Just Cannot Figure It Out;
For the most part every day; whether it is a holdiay or not, You have to find the happiness in the few minutes or hours that present themselves and FORGET the stress or behavior that will come and go. One thing I have noticed is that our kids seem to be impervious their behavior and how it affects those around them.Another thing is that they are also unbelievablely resilient to behavior--At least that seems to be the case with Dakota.
As I have said before that it seems as if the recent behavior patterns are almost siezure like. They come and go in short spans of time and it seems as if Dakota almost has an "out of Body" experience. Also, it is very apparent that the less confrontation the quicker the situation seems to "blow over". Moreover the most amazing thing is this resilience I have witnessed with Dakota---After a very short period of time, it is as if the behavior never happened. He is smiling and sometimes laughing and literally untouched by this episode that was so intense its enough to make my head explode. That makes me happy he can go through that and come back to a calm peaceful place. What I take issue with is there no learning place in all of that. Hence the nature of the beast! How can one learn if it becomes a "non issue"?
Yesterday was one of those days!
Went were motoring through the regular event of the day when while we were out in the car he flipped out----Screaming and yelling and grabbing my arm calling me names as we rounded the corner heading for home he clicked off his seatbelt and opened the door while the car was in motion-- LUckily I was about 30 to 40 feet from a clear driveway so I swung into the first parking spot as he piled out of the car yelling at the top of his lungs F---this F---that-- he walked down to the sidewalk and told me he wasnt getting back into the car--- I knew I could not "make" him get back in so I had to let it play out---Once he got down to the sidewalk I think he realized that he didnt know which way to go so after 2 or 3 minutes he finally relented and got back in the car -- I told him if he wants to blow up do it at home.
WE made a quick trip to the house and he retreated to the nedroom and finished out his fit. I have found that if I leave him alone, it will fizzle out faster. I went about my business in the kitchen and eventually he came around----
To the minute of writing this I still DO NOT know what caused this behavior and that is the most frustrating--- If I could see the antecedant perhaps I could avoid these incidents but right now
I Just Cannot Figure It Out;
Subscribe to:
Posts (Atom)