It is always the purpose of this journal to offer "food for thought" and perhaps a perspective that might not be the obvious. Sometimes I think that I portray things as "Coming up Roses" or shall we say more fluff and butterflies than the get down in the dirty grind of every day life with Autism. I apologize for anyone who might be losing faith in my blog because of this.
In defense of myself I will say that I do believe that anyone dealing with this disorder on a day by day basis needs all the optimism they can get. Also it is extremely easy to loose focus and literally forget that the person who has Autism CANNOT control so many of the things we as "typical " {I hate this label} human beings do. So I wish to shed as much light and hope and insight as I possibly can.
With all that being said;Today SUCKED! And there have been many other days like it . I try to take each incident and turn it into a learning experience most of the time with some success. However there are many times you try with everything you have and you just cannot figure out what happened and why!
There was a good part of the day that was basic and routine and for those hours and minutes you are thankful. It almost becomes something that is taken for granted until "Hiroshima" hits. Honestly as the years go by it does seem to be better; less incidence; more ability to handle a situation,but sometimes in the middle of a meltdown it seems like years pass and there is no way out and no solution to the problem. What I have discovered in our case is that the sooner you do not react or can
de-escalate the quicker "Norm" returns. {I will post a specific incidence in the next blog}
Although I believe you can educate yourself and arm yourself with many tools there is will always be situations that will make you scratch your head and wonder where the hell "that" came from --- and what the hell caused it -- further more how the hell you can ever avoid it again!
I think the main purpose of this particular piece is the acknowledgement Autism is down and dirty and it does not play fair. When you have a success you beam like a lighthouse guiding a ship in a storm but when that dragon rears its head and shoots fire there is an overwhelming survival instinct that takes over.Sometimes your are not very pretty and afterward you beat yourself up because you think you could have handled it more effectively.
Moreover I want to address the minute or hours of most everyday that turn our lives upside down. It is forever better to tell others of the good and positive. Honestly what I want accomplish with this excerpt is to truthfully let others know its not all roses. I never want anyone to think that I am not down in the trenches dealing with the same issues they are and certainly not that I have any miracle solutions.
Autism is a complex crazy disorder that not only cripples the individual who has it but affects everyone in that persons life.
Friday, July 31, 2009
Monday, July 27, 2009
For Christ's Sake!
this excerpt was generated from"a go around " i have already had this morning with the Inland Regional Center---sparring the particulars I felt it necessary to comment on the importance of never giving up!
Does it ever end???"One" wonders how much "one" can take before you finally blow up!
Many of us face difficult challenges every day not just with the Autistic Community but life in general. Whether it is cancer, an addiction, abuse, or some other life altering event; it can be overwhelming. For myself and I assume for many others we always hold out hope that eventually somethings gotta give, there will be a reprieve or perhaps a
"Happily Ever After!" NOT!
Some are fortunate to go through an experience and come out the other side with a little more insight and wisdom. Some go through life never living anything other than an "Ozzie and Harriet" life. Then there are the rest of us-- who for some reason have been chosen to face this crappy stuff over and over again till the end of time. It is a battlefield. It is why many repeat over and over again "choose your battles". You never know if you slay this dragon another is just around the corner and its 10 times as bad as the first one.
Metaphorically I speak about the obstacles most all of us face caring for some one with special needs . I don't mean to be exclusionary that is why I acknowledged others above.
But this where I just become indignant. Over and Over from the time your baby is born it is a fight. First its the Medical Profession and all they insist is wrong or NOT wrong with your child--then when you can almost agree that you need special things for you child --here comes the School districts and what a pain in the ass that is--- day after day, month after month, year after year you watch dog the class ,the aides , the teachers , the school trying to make a difference in your kids life. Every time you turn around its something else. The IEP is not being enforced, your child is being excluded, hes not getting services promised, there's a budget cut, someone is absent {like the teacher and then the whole day is a wash}, the bus was late or tried to drop them off at the wrong address, other kids are picking on ours and NO ONE is coming to their defense; the list goes on and on AND it never stops!
Then one day they are ready to give your child a Certificate of Completion {never really teaching them much} and send them on their way. Its as if they fall of the edge of a table-- the supports and opportunities become minuscule. But you think "Oh the worst is behind us!" OH NO then you have to fight again with what little services are available through the Regional Center. Again you are jumping through hoops just to get a little of what your child needs and deserves to exist in his community.
I am loathed to say this but "It is an Never-ending Battle" Every fight is another chink in the armour. You cannot give up. You must persevere. You must be Relentless. Sometimes you will find yourself limp and lifeless and wondering if it is all worth it. Trust me IT IS!
For every battle you engage in you have made your child's world a little bit better. You have brought light to a corner that was dark before and perhaps along the way you have also taught another person a little bit more about your child and the world he and many many others live EVERY DAY OF THEIR LIVES!
Does it ever end???"One" wonders how much "one" can take before you finally blow up!
Many of us face difficult challenges every day not just with the Autistic Community but life in general. Whether it is cancer, an addiction, abuse, or some other life altering event; it can be overwhelming. For myself and I assume for many others we always hold out hope that eventually somethings gotta give, there will be a reprieve or perhaps a
"Happily Ever After!" NOT!
Some are fortunate to go through an experience and come out the other side with a little more insight and wisdom. Some go through life never living anything other than an "Ozzie and Harriet" life. Then there are the rest of us-- who for some reason have been chosen to face this crappy stuff over and over again till the end of time. It is a battlefield. It is why many repeat over and over again "choose your battles". You never know if you slay this dragon another is just around the corner and its 10 times as bad as the first one.
Metaphorically I speak about the obstacles most all of us face caring for some one with special needs . I don't mean to be exclusionary that is why I acknowledged others above.
But this where I just become indignant. Over and Over from the time your baby is born it is a fight. First its the Medical Profession and all they insist is wrong or NOT wrong with your child--then when you can almost agree that you need special things for you child --here comes the School districts and what a pain in the ass that is--- day after day, month after month, year after year you watch dog the class ,the aides , the teachers , the school trying to make a difference in your kids life. Every time you turn around its something else. The IEP is not being enforced, your child is being excluded, hes not getting services promised, there's a budget cut, someone is absent {like the teacher and then the whole day is a wash}, the bus was late or tried to drop them off at the wrong address, other kids are picking on ours and NO ONE is coming to their defense; the list goes on and on AND it never stops!
Then one day they are ready to give your child a Certificate of Completion {never really teaching them much} and send them on their way. Its as if they fall of the edge of a table-- the supports and opportunities become minuscule. But you think "Oh the worst is behind us!" OH NO then you have to fight again with what little services are available through the Regional Center. Again you are jumping through hoops just to get a little of what your child needs and deserves to exist in his community.
I am loathed to say this but "It is an Never-ending Battle" Every fight is another chink in the armour. You cannot give up. You must persevere. You must be Relentless. Sometimes you will find yourself limp and lifeless and wondering if it is all worth it. Trust me IT IS!
For every battle you engage in you have made your child's world a little bit better. You have brought light to a corner that was dark before and perhaps along the way you have also taught another person a little bit more about your child and the world he and many many others live EVERY DAY OF THEIR LIVES!
Sunday, July 26, 2009
Recognize, Understand and Accept some Behavior!
There will be some who will probably disagree with me adamantly on this observation . I stand solid on this belief. I hope those who read this will consider my opinion.
Our children, teens, young adults, adults regardless of their Autism are just like anyone else. They have their likes and dislikes and personality quirks that make them WHO they are. We as parents and caregivers,even professionals that work with our kids.have a human flaw to try to correct their {our children} every flaw. I define flaw as anything that would indicate to the "outside world" that our kids are Autistic or any less than "typical". From a personal stand point I am constantly aware of our surroundings when in public and keenly aware of anyone that might be observing or paying closer attention than most to my son and the interactions that are occurring. My mind is in constant motion analyzing, plotting and negotiating ways to allow Dakota to co-exist in the community without causing judgment or worse, rejection from the general public. I want him to have a even playing field. I admit perhaps that attitude is a bit "Pollyanna".
Recently we went to a studio for a taping of a TV show. This is a preferred activity and something that Dakota does extremely well. Once seated in the studio audience there are periodic times when you are allowed to get up and stretch, go to the bathroom or get a drink of water---as some of the tapings can be 3 or 4 hours.
I try to prepare Dakota so we wont have any "hiccups" while we are at the studio/ Those hiccups being primarily "behaviors". Make sure he has eaten and pee'd and all of his creature needs have been tended to ----
One issue I have been struggling with is Dakotas hydration. For several years he has had a blatant refusal to drink water out of ANYTHING other than a water fountain{YUK}. I have tried everything he absolutely refuses a water bottle or even a fast food drink cup with a lid and straw. he will not drink water except at home with one specific glass that sits next to the counter top dispenser and even that is only once in a while--- he has regressed to eating ice cubes for hydration most of the time. This behavior is very challenging due to the health implications of keeping the body hydrated . I have to stay on him at home and I use alternatives like de-caf Ice Tea or 100% juice Popsicles. occasionally I torment him enough to drink from his glass and I succeed about 50% of the time. When we are out we improvise. Mostly seeking out any water fountain available -- I have gone so far as to have him drink from a hose because there was no fountain!
OK so this gets back to the title --- Recognize,Understand, and Accept 'SOME" behavior.When we were at the studio Dakota decided to get up to stretch and seemed like he wanted he to come with hm-- I followed him out to the lobby where he discovered NO WATER FOUNTAIN.
Before I could even say a word he grabbed me by the shoulders, growled a bit and started shaking me. It was near a doorway where people were going in and out of and couple of men came around the corner and looked like they were not sure what to do. I took a deep breath reached for my "inner calm" and said its OK Dakota -- I know you want a water fountain--they don't have one--lets go see what we can do?---- I originally started to head for the bathroom thinking I could get him to drink from the sink but there was a line and I didn't want to deal with the looks and stares by barging into the men's or ladies room. So we walked outside. I found some sprinklers and knew there had to be a water source so we strolled around the building until I found the valves and VIOLA There was a spigot! I know anyone who was watching probably thought we were both nuts but I knew this would resolve the behavior. I got the water turned on and had Dakota just take a few sips and it was like magic---- He walked away, walked back inside and that was it NO MORE BEHAVIOR.
So I cannot stress enough how much you have to keep on your toes to recognize those triggers and know what strategies you can use to appease the behavior. Some of these behaviors are just who our kids are and we cannot make them give up every thing that defines them as an individual. We all try so hard to turn our kids into "White Bread" when they are more like a "Swirly Rye!" We have to let them have some identity and sometime that's indicative of behavior-- There is a reason in their head why they do what they do . I believe they they cannot possibly be mis-behaving for the attention -- they are simply using the communication skills they know and asking for what they need.
We may not agree with them but sometimes we just have to understand and accept what we recognize as a part of their identity.
Our children, teens, young adults, adults regardless of their Autism are just like anyone else. They have their likes and dislikes and personality quirks that make them WHO they are. We as parents and caregivers,even professionals that work with our kids.have a human flaw to try to correct their {our children} every flaw. I define flaw as anything that would indicate to the "outside world" that our kids are Autistic or any less than "typical". From a personal stand point I am constantly aware of our surroundings when in public and keenly aware of anyone that might be observing or paying closer attention than most to my son and the interactions that are occurring. My mind is in constant motion analyzing, plotting and negotiating ways to allow Dakota to co-exist in the community without causing judgment or worse, rejection from the general public. I want him to have a even playing field. I admit perhaps that attitude is a bit "Pollyanna".
Recently we went to a studio for a taping of a TV show. This is a preferred activity and something that Dakota does extremely well. Once seated in the studio audience there are periodic times when you are allowed to get up and stretch, go to the bathroom or get a drink of water---as some of the tapings can be 3 or 4 hours.
I try to prepare Dakota so we wont have any "hiccups" while we are at the studio/ Those hiccups being primarily "behaviors". Make sure he has eaten and pee'd and all of his creature needs have been tended to ----
One issue I have been struggling with is Dakotas hydration. For several years he has had a blatant refusal to drink water out of ANYTHING other than a water fountain{YUK}. I have tried everything he absolutely refuses a water bottle or even a fast food drink cup with a lid and straw. he will not drink water except at home with one specific glass that sits next to the counter top dispenser and even that is only once in a while--- he has regressed to eating ice cubes for hydration most of the time. This behavior is very challenging due to the health implications of keeping the body hydrated . I have to stay on him at home and I use alternatives like de-caf Ice Tea or 100% juice Popsicles. occasionally I torment him enough to drink from his glass and I succeed about 50% of the time. When we are out we improvise. Mostly seeking out any water fountain available -- I have gone so far as to have him drink from a hose because there was no fountain!
OK so this gets back to the title --- Recognize,Understand, and Accept 'SOME" behavior.When we were at the studio Dakota decided to get up to stretch and seemed like he wanted he to come with hm-- I followed him out to the lobby where he discovered NO WATER FOUNTAIN.
Before I could even say a word he grabbed me by the shoulders, growled a bit and started shaking me. It was near a doorway where people were going in and out of and couple of men came around the corner and looked like they were not sure what to do. I took a deep breath reached for my "inner calm" and said its OK Dakota -- I know you want a water fountain--they don't have one--lets go see what we can do?---- I originally started to head for the bathroom thinking I could get him to drink from the sink but there was a line and I didn't want to deal with the looks and stares by barging into the men's or ladies room. So we walked outside. I found some sprinklers and knew there had to be a water source so we strolled around the building until I found the valves and VIOLA There was a spigot! I know anyone who was watching probably thought we were both nuts but I knew this would resolve the behavior. I got the water turned on and had Dakota just take a few sips and it was like magic---- He walked away, walked back inside and that was it NO MORE BEHAVIOR.
So I cannot stress enough how much you have to keep on your toes to recognize those triggers and know what strategies you can use to appease the behavior. Some of these behaviors are just who our kids are and we cannot make them give up every thing that defines them as an individual. We all try so hard to turn our kids into "White Bread" when they are more like a "Swirly Rye!" We have to let them have some identity and sometime that's indicative of behavior-- There is a reason in their head why they do what they do . I believe they they cannot possibly be mis-behaving for the attention -- they are simply using the communication skills they know and asking for what they need.
We may not agree with them but sometimes we just have to understand and accept what we recognize as a part of their identity.
Sunday, July 5, 2009
The Summer and 4th of July
Well Happy Fourth of July--to everyone.
Summer poses different challenges for those of us who live with Autism.
Our kids for the most part are used to structure and routine. When summer comes and school ends our kids seem to fall apart. Not always and not with all kids but enough to write a little about it----
IF you have observed any new or different behavior or stemming it may because of this type of interruption.
Look we all need a break especially if we are ones who are "managing" our families. Summer is a time that allows us to sleep in or change things around a little since we don't have the routine of school. The irony is that it can also be the thing that makes our kids a little more crazy.
Don't beat yourself up trying to keep structure or uniformity. It can be a double edged sword. It may be a way to keep peace in the house and comfort for your child however it can always be a way to desensitize your baby to change. Our kids learn much the same way most of us learn -- They have to experience challenges and change in order to process and develop an ability to tolerate and act appropriately in everyday situations. Again you have to pick your battles but you have to remember that the more you expose them to changing environments the more they will adapt. You must be educated in your choices; knowing what will work with your child and when the time is right. Don't hesitate to try because in the end your whole family will benefit.
I have also found that age is a great equalizer for our children also. My observation is that as our kids gain age they seem to gain ability to tolerate. Don't misunderstand our babies will always be autistic but there is something to be said for time.
So do what you can and do what you think you need to do to keep sanity in your home and lives. Most importantly do not beat yourself up if you cannot maintain the schedule or routine. Also remember that there will come a day that school will no longer be a factor. Our kids have to face the world like anyone else and believe me the support and services vanish . You have to create what you want for your child. Believe me the changes come and our kids get through it. Coming full circle; summer is the perfect time to search for and try new and different things. To open up a dialogue {more like a monologue} with your child to explore new possibilities and experiences. Give them some tools to handle the world outside of Autism.
Summer poses different challenges for those of us who live with Autism.
Our kids for the most part are used to structure and routine. When summer comes and school ends our kids seem to fall apart. Not always and not with all kids but enough to write a little about it----
IF you have observed any new or different behavior or stemming it may because of this type of interruption.
Look we all need a break especially if we are ones who are "managing" our families. Summer is a time that allows us to sleep in or change things around a little since we don't have the routine of school. The irony is that it can also be the thing that makes our kids a little more crazy.
Don't beat yourself up trying to keep structure or uniformity. It can be a double edged sword. It may be a way to keep peace in the house and comfort for your child however it can always be a way to desensitize your baby to change. Our kids learn much the same way most of us learn -- They have to experience challenges and change in order to process and develop an ability to tolerate and act appropriately in everyday situations. Again you have to pick your battles but you have to remember that the more you expose them to changing environments the more they will adapt. You must be educated in your choices; knowing what will work with your child and when the time is right. Don't hesitate to try because in the end your whole family will benefit.
I have also found that age is a great equalizer for our children also. My observation is that as our kids gain age they seem to gain ability to tolerate. Don't misunderstand our babies will always be autistic but there is something to be said for time.
So do what you can and do what you think you need to do to keep sanity in your home and lives. Most importantly do not beat yourself up if you cannot maintain the schedule or routine. Also remember that there will come a day that school will no longer be a factor. Our kids have to face the world like anyone else and believe me the support and services vanish . You have to create what you want for your child. Believe me the changes come and our kids get through it. Coming full circle; summer is the perfect time to search for and try new and different things. To open up a dialogue {more like a monologue} with your child to explore new possibilities and experiences. Give them some tools to handle the world outside of Autism.
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