More than once a day I think about writing another entry here. Thoughts flood my mind and I am always thinking about whether others are feeling oe experiencing the same.
I recently read a post by another mom who likened Autism to an empty suitcase and how you have to decide what to pack into it. Her retort was in response to others who have gone on to comment that Autism can be compared to an unexpected trip to Holland when you thought you were going to Italy as well as another Mom who expressed herself by saying we were all chosen for this "task". I dont know if I have come to a "clarity" as these women have. After 23 years I only know that this is what we have challenges and delights or anything in between and WE DEAL WITH IT. Dont like it; wish I didnt have to learn about Autism; want a fairytale life BUT this is it.
There are so many sayings out there; take your lemons and make lemonaid-- tommorrow is another day-- Hold out Hope.
THE ONE THAT GETS ME THE MOST IS:
"God doesnt give you more than you can handle." BULLSHIT
I do not mean to offend anyone and I know each and everyone who has said that to me was a caring well meaning individual BUT I just cannot stand this saying. I am a Christian and I do believe that there is a God. God does not have anything to do with this part of your exsistance in my humble opinion. I will stop right there!
My thought is this; each and everyone of us have challenges in our life. If its not an abusive relationship, its a child that might have an addiction problem, there could be an accident which rendered a person with disability for the remainder of their life, A member of the family has Lupus or Cancer or Diabetes, Divorce, abandonment and the list goes on. EVERYONE handles anyone of these things differently. Some are strong some are not. Many get through it with out a blink of an eye, others crumble at the first defeat. God does gives us more than we can handle. It is how we handle it that determines whether we make it through. Some people use drugs or alcohol, some committ suicide, some end up in a mental institution others just "muscle" through.
What I know: you have to find your own groove. You have to find what "helps you through the night". Its one foot in front of the other and its day to day-- trying not to refer back to a "saying" but "One Day at a time" and the "Serenity Prayer" have been my crutches.Of course I would be remiss if I didnt mention watching my baby grow and develop as part of my "lust for life".
Circling back to the original intent of this piece; I have been flooded with thoughts to post yet reluctant to write. Mostly because I have found that allowing time to pass before I write gives me a little more perspective.
My committment from the onset of this blog was to write with the intent to help other parents sort out their experiences and emotions. To allow them to read good and bad and everything in between so they can put perspective own their situation. To know they are not alone. Mostly to let any denial or bad feelings be resolved when they realize that its OK to feel however they feel BUT to never loose sight of their child and his /her disability. Never apologize to someone outside of the situation who doesnt understand-- Their child has a disability and frankly theres no time for that.
I have been having some pretty rough times with Dakota lately. I have held back writing about it as I am waiting for the moment when the behavior makes sense to me. All this has stifled my ability to write about it and is why I have stumbled on to this observational excerpt on feelings, thoughts and purpose. Perhaps this is allowing me to navigate through my own feelings.
I promised myself at the begining that I would never hold back; good and bad. For the first time I am trying to withhold comments because I feel that I am Jaded right now-- I am worn down and loosing perspective --- These times come BUT they also go. I need some rest, respite and/or escape-- I know it, I just dont see any possibility right now especially with the issues Dakota is going through.
So I will hold my comments on this particualr "chapter" of our lives till I feel my words are not tainted by my own frustration.
So much going through my head yet my words are empty.
Sunday, March 21, 2010
What Health Care Reform could mean to Dakota
This is just a tip of the ice berg but below are some of the reasons why we need paasage of Health Care
FOR EVERY UNITED STATES CITIZEN.
Not only those who have the intellectual or developmental challenges but those who care for these individuals need this legislation.
Provisions in the Senate Bill that are Most Important for
People with Intellectual and Developmental Disabilities
Coverage
• Prohibiting private health insurance exclusions for pre-existing conditions.
• Eliminating annual and lifetime caps in private insurance policies;
• Restricting the consideration of health status in setting premiums.
• Expanding Medicaid to cover individuals with incomes up to 133 percent of the federal poverty line (approximately $29,000 per year for a family of four).
Benefits
• Ensuring that minimum covered benefits include products and services that enable people with disabilities to maintain and improve function, such as rehabilitation and habilitation services and devices.
Access to Quality Care
• Improving training of physicians, dentists, and allied health professionals on how to treat persons with disabilities.
• Requiring the Centers for Medicare and Medicaid Services to collect data on beneficiaries with disabilities access to primary care services and the level to which primary care service providers have been trained on disability issues. Ensuring prevention programs include a focus on individuals with disabilities.
Long Term Services and Supports
• Increasing the federal share of Medicaid, known as the Federal Medical Assistance Percentage (or FMAP), for home and community based services (HCBS) and during periods of economic downturn.
• Allowing states to offer additional services under the 1915(i) Medicaid HCBS Waivers State Plan Option.
• Providing spousal impoverishment protections for HCBS Beneficiaries.
• Strengthening long-term services and supports through a two pronged approach:
1) Taking pressure off of the Medicaid program:
The Community Living Assistance Services and Supports (CLASS) Act would create a national long term services insurance program which assists eligible individuals and their families to meet long term needs with a cash benefit and without forcing them into poverty to receive Medicaid benefits.
2) Improving the Medicaid program:
The Community First Choice Option would help to eliminate the institutional bias by encouraging state states to cover personal attendant services under the state's optional service plan instead of through the waiver system by offering a 6% increase in the federal share of Medicaid for these services.
Please remember that there have been many non popular pieces of legislation passed, that we now embrace and cannot believe that we ever did with out them -- Too many are speaking on behalf of quashing this movement -- I want to take a stand to let others know why we need to embrace it!
Remember Womens Sufferage--- The Social Security Act and how 'bout Civil Rights Legislation???? So many opposed these; but where would we be without any one of these laws now???
I am not trying to shove this down anyones throat -- what I am doing is trying to cast light on a side other than the ones out there protesting the opposite view point-- Decide for yourself but rememeber the greater good.
Think about Viet Nam many of us were out there telling you it was wrong and we needed to stop the war yet it raged on and divided the country and families. Years later we were vindicated for our protest.I truly believe that Health Care absolutely needs to be passed, Stop listening to the media and the sound bites. Read, study, ask questions. Do you honestly believe that anyone of those people in Congress are trying to push something off on us that will harm us or devour our country--R E A L L Y ?????? And they are jepordizing their own political life by doing so?????? R E A L L Y ?
MY information is that the first year it is enacted it will save us millions of dollars and in the first ten years it will save over a trillion--
OK I do not want this to be a political forum and I will not say anymore but I felt a duty to so once! THE END.
FOR EVERY UNITED STATES CITIZEN.
Not only those who have the intellectual or developmental challenges but those who care for these individuals need this legislation.
Provisions in the Senate Bill that are Most Important for
People with Intellectual and Developmental Disabilities
Coverage
• Prohibiting private health insurance exclusions for pre-existing conditions.
• Eliminating annual and lifetime caps in private insurance policies;
• Restricting the consideration of health status in setting premiums.
• Expanding Medicaid to cover individuals with incomes up to 133 percent of the federal poverty line (approximately $29,000 per year for a family of four).
Benefits
• Ensuring that minimum covered benefits include products and services that enable people with disabilities to maintain and improve function, such as rehabilitation and habilitation services and devices.
Access to Quality Care
• Improving training of physicians, dentists, and allied health professionals on how to treat persons with disabilities.
• Requiring the Centers for Medicare and Medicaid Services to collect data on beneficiaries with disabilities access to primary care services and the level to which primary care service providers have been trained on disability issues. Ensuring prevention programs include a focus on individuals with disabilities.
Long Term Services and Supports
• Increasing the federal share of Medicaid, known as the Federal Medical Assistance Percentage (or FMAP), for home and community based services (HCBS) and during periods of economic downturn.
• Allowing states to offer additional services under the 1915(i) Medicaid HCBS Waivers State Plan Option.
• Providing spousal impoverishment protections for HCBS Beneficiaries.
• Strengthening long-term services and supports through a two pronged approach:
1) Taking pressure off of the Medicaid program:
The Community Living Assistance Services and Supports (CLASS) Act would create a national long term services insurance program which assists eligible individuals and their families to meet long term needs with a cash benefit and without forcing them into poverty to receive Medicaid benefits.
2) Improving the Medicaid program:
The Community First Choice Option would help to eliminate the institutional bias by encouraging state states to cover personal attendant services under the state's optional service plan instead of through the waiver system by offering a 6% increase in the federal share of Medicaid for these services.
Please remember that there have been many non popular pieces of legislation passed, that we now embrace and cannot believe that we ever did with out them -- Too many are speaking on behalf of quashing this movement -- I want to take a stand to let others know why we need to embrace it!
Remember Womens Sufferage--- The Social Security Act and how 'bout Civil Rights Legislation???? So many opposed these; but where would we be without any one of these laws now???
I am not trying to shove this down anyones throat -- what I am doing is trying to cast light on a side other than the ones out there protesting the opposite view point-- Decide for yourself but rememeber the greater good.
Think about Viet Nam many of us were out there telling you it was wrong and we needed to stop the war yet it raged on and divided the country and families. Years later we were vindicated for our protest.I truly believe that Health Care absolutely needs to be passed, Stop listening to the media and the sound bites. Read, study, ask questions. Do you honestly believe that anyone of those people in Congress are trying to push something off on us that will harm us or devour our country--R E A L L Y ?????? And they are jepordizing their own political life by doing so?????? R E A L L Y ?
MY information is that the first year it is enacted it will save us millions of dollars and in the first ten years it will save over a trillion--
OK I do not want this to be a political forum and I will not say anymore but I felt a duty to so once! THE END.
Sunday, March 7, 2010
The Day Came---Police
My mother was a great person raising me.She taught me all the things we need to know about being a good person and treating others with respect and dignity. To "do unto others" and all the moral things of how to treat people. Judging people has always been a pet peeve of mine and especially since I have had a child with a disability that is not obvious from first glance.
We live in a society that thinks with their eyes. We also have a society which is unyielding. Most people believe that what they are going thru is always more serious or takes precedent over others.One other thing I have discovered, is that understanding transferrence or concepts for most is virtually nonexsistant. Example; Someone who has open heart surgery or cancer or diabetes and an individual who has Autism are EQUALLY DISABLED.
When an individual with Autism has a "behavior" that is the same as someone falling into a diabetic coma.It can be managed, it can be medicated BUT it CANNOT ALWAYS BE AVOIDED.
Something went terribly wrong a day ago. We had to take Grandma for some tests. When we got to the lab {one we had been to many times before with NO INCIDENT}Things were different.Mostly the chairs had been rearranged from the previous visit but also there were a few more people than most times we had been there.
Not exactly sure what started the behavior-- I have several guesses but irregardless Dakota grabbed his Grandmother.Immediately I sprung out of my chair to disengage this "behavior". But I knew we were in for a rough ride. My thought was to get him out of the building as fast as I could. Of course the more I insisted the worst it became This is where that judgement kicks in. There was an older man with his wife who was protective of and I give no argument for his concern. She was sick. I could tell that this guy was "old school"{I was trying not to judge him and give him the benefit of the doubt to understand my situation} He was not having any of what Dakota was putting down.I tried to assure him I had it under control and we manuevered away from him ,his wife and others. {when Dakota was little I would just throw him over my shoulder and haul him out like a sack of potatoes.}
Of course this was a behavior that was not going away easily. It escalated to filthy words, shouting and some physical agression towards me--since I was trying to quash the whole thing.Something snapped with me and I knew I had to get him out of the lab. Mostly because this old man had a look like he would just as soon shoot Dak than to understand him--so it was time to go. Actually at that point I was in auto-mode.I do not know how I got him out but I physically escorted him out and got him to the car.
He refused to get in the car at first and I insisted that he was not going anywhere but in the car. He shouted and called me a few choice names and let the F-BOMB fly at the top of his lungs. He grabbed ahold of my neck and rocked me back and forth, bounced his head on my head and attempted to threaten to bite me. {which knew he was not going to succeed as I had "moves" to avoid that}I was able to finally convince "the behavior" that There was no place to go but in the car.At least I felt like it was somewhat contained {in the car} at that point.This type of behavior does seem to come in waves; it is always turbulant but there are "rogue waves" that are far more intense than the rest.
At some point in the car it escalated again and he grabbed my arm, then my hair and before I thought it through I grabbed a bottle of water and splashed it on him. WELL "MY BAD". I might as well have thrown lighter fluid on a match. He really flipped out and tried to get out of the car. First I tried to "hold him at bay" but decided that I had to let him go. I contemplated allowing him to roam the parking lot to release the frustration. It was a busy parking lot and I was concerned for his safety. In hind sight I think now letting him blow off steam and walking around the parking lot MAY HAVE defused the behavior sooner but I will never know now. By the time Dakota got out of the car I was able to get around and corral him between the car door and the seat of the car, He was so mad at me and he was continuing to yell and at one point even begged me to slap him repeatedly.I could not do that.
You see although he is a full grown man his agressiveness really has NO INTENT behind it. He can growl and be physically threatening but his ability to truly hurt would be purely accidental. My bigger fear is that I dont keep my wits about myself and react as most "typical" people would. Lash out and really hurt him. All it would take would be an elbow or a punch and he could be really hurt.I just could not do it.Nor could I slap him at his request.
I believe that when he is at that point of the behavior he knows that he has absolutely no control over the static or disconnect in his head. He believes that the physical pain will release the endorfins or seratonin which makes him feel better. Many of the most severe Autistics have self injurious behavior such as rocking or head banging to release these self made chemicals which theoretically soothe the brain.
So back to the parking lot: By this time what seemed like years had gone by but I am sure it probably was about 20 minutes total; since the start inside had past--a few people asked me if I needed help and I kindly told them
"No Thank You that Dakota was Autistic" and I had it under control, this was all over Dakota's distress and yelling. I just had to allow it to blow over. Even though it appeared to typical people, "judging " with their eyes,Thought differently.
Finally the fit was coming to a conclusion and I was able to convince him to get into the car again. He sat down, strapped himself in the seat and was ready to go for a ride till Grandma was done.{I know I have said this before but these behaviors present themselves like seizures--as fast as they come---they go.}I start the car and as I am backing out I notice a motorcycle Policeman coming up the isle right behind me.I exit out to the street and before you know it I have the red and blue lights on me and I am being pulled over. Thats right just as if I had committed a crime.
I understand that someone felt like perhaps I needed assistance. For the most part the Police were very respectful and accommodating but again someone somewhere made a judgement that Dakota was hurting me.I realize there was shouting and physicality and from an onlooker perhaps they thought they were doing a good deed. The police ask me if I was just at the Lab and what was happening. They were there to help but I still felt like it was unnecessary. They asked if I was OK and if there was anything else that I needed or they could assist me with. Again they were extremely kind and I appreciated their ability to not come on with the "cop attitude". In fact I called the station afterwards and commended the officers.
BUT really folks it took 1 motorcucle policeman and 2 patrol cars with 2 men in each of them to respond to a relatively benign situation.
It was a pretty hairy behavior but it passed as they all do. I am more sorry for Dakota and what his head must go through when something like that happens. ONE THING I KNOW FOR SURE is he CANNOT help himself at that point.
Finally if more people would stop judging with their eyes and really consdering others and their situations, we would all be better off. In particular a disability is a disability is a disability. If some has cancer you do not love them any less, if some one has a heart problem you do not love tham any less,If someone has Autism YOU DO NOT LOVE THEM ANY LESS!
this was our first encounter with the poice and I certainlu hope our last.I have such a great fear that they will try to find a reason to take Dakota, That day will never come as long as I have a breathe left in my body!
We live in a society that thinks with their eyes. We also have a society which is unyielding. Most people believe that what they are going thru is always more serious or takes precedent over others.One other thing I have discovered, is that understanding transferrence or concepts for most is virtually nonexsistant. Example; Someone who has open heart surgery or cancer or diabetes and an individual who has Autism are EQUALLY DISABLED.
When an individual with Autism has a "behavior" that is the same as someone falling into a diabetic coma.It can be managed, it can be medicated BUT it CANNOT ALWAYS BE AVOIDED.
Something went terribly wrong a day ago. We had to take Grandma for some tests. When we got to the lab {one we had been to many times before with NO INCIDENT}Things were different.Mostly the chairs had been rearranged from the previous visit but also there were a few more people than most times we had been there.
Not exactly sure what started the behavior-- I have several guesses but irregardless Dakota grabbed his Grandmother.Immediately I sprung out of my chair to disengage this "behavior". But I knew we were in for a rough ride. My thought was to get him out of the building as fast as I could. Of course the more I insisted the worst it became This is where that judgement kicks in. There was an older man with his wife who was protective of and I give no argument for his concern. She was sick. I could tell that this guy was "old school"{I was trying not to judge him and give him the benefit of the doubt to understand my situation} He was not having any of what Dakota was putting down.I tried to assure him I had it under control and we manuevered away from him ,his wife and others. {when Dakota was little I would just throw him over my shoulder and haul him out like a sack of potatoes.}
Of course this was a behavior that was not going away easily. It escalated to filthy words, shouting and some physical agression towards me--since I was trying to quash the whole thing.Something snapped with me and I knew I had to get him out of the lab. Mostly because this old man had a look like he would just as soon shoot Dak than to understand him--so it was time to go. Actually at that point I was in auto-mode.I do not know how I got him out but I physically escorted him out and got him to the car.
He refused to get in the car at first and I insisted that he was not going anywhere but in the car. He shouted and called me a few choice names and let the F-BOMB fly at the top of his lungs. He grabbed ahold of my neck and rocked me back and forth, bounced his head on my head and attempted to threaten to bite me. {which knew he was not going to succeed as I had "moves" to avoid that}I was able to finally convince "the behavior" that There was no place to go but in the car.At least I felt like it was somewhat contained {in the car} at that point.This type of behavior does seem to come in waves; it is always turbulant but there are "rogue waves" that are far more intense than the rest.
At some point in the car it escalated again and he grabbed my arm, then my hair and before I thought it through I grabbed a bottle of water and splashed it on him. WELL "MY BAD". I might as well have thrown lighter fluid on a match. He really flipped out and tried to get out of the car. First I tried to "hold him at bay" but decided that I had to let him go. I contemplated allowing him to roam the parking lot to release the frustration. It was a busy parking lot and I was concerned for his safety. In hind sight I think now letting him blow off steam and walking around the parking lot MAY HAVE defused the behavior sooner but I will never know now. By the time Dakota got out of the car I was able to get around and corral him between the car door and the seat of the car, He was so mad at me and he was continuing to yell and at one point even begged me to slap him repeatedly.I could not do that.
You see although he is a full grown man his agressiveness really has NO INTENT behind it. He can growl and be physically threatening but his ability to truly hurt would be purely accidental. My bigger fear is that I dont keep my wits about myself and react as most "typical" people would. Lash out and really hurt him. All it would take would be an elbow or a punch and he could be really hurt.I just could not do it.Nor could I slap him at his request.
I believe that when he is at that point of the behavior he knows that he has absolutely no control over the static or disconnect in his head. He believes that the physical pain will release the endorfins or seratonin which makes him feel better. Many of the most severe Autistics have self injurious behavior such as rocking or head banging to release these self made chemicals which theoretically soothe the brain.
So back to the parking lot: By this time what seemed like years had gone by but I am sure it probably was about 20 minutes total; since the start inside had past--a few people asked me if I needed help and I kindly told them
"No Thank You that Dakota was Autistic" and I had it under control, this was all over Dakota's distress and yelling. I just had to allow it to blow over. Even though it appeared to typical people, "judging " with their eyes,Thought differently.
Finally the fit was coming to a conclusion and I was able to convince him to get into the car again. He sat down, strapped himself in the seat and was ready to go for a ride till Grandma was done.{I know I have said this before but these behaviors present themselves like seizures--as fast as they come---they go.}I start the car and as I am backing out I notice a motorcycle Policeman coming up the isle right behind me.I exit out to the street and before you know it I have the red and blue lights on me and I am being pulled over. Thats right just as if I had committed a crime.
I understand that someone felt like perhaps I needed assistance. For the most part the Police were very respectful and accommodating but again someone somewhere made a judgement that Dakota was hurting me.I realize there was shouting and physicality and from an onlooker perhaps they thought they were doing a good deed. The police ask me if I was just at the Lab and what was happening. They were there to help but I still felt like it was unnecessary. They asked if I was OK and if there was anything else that I needed or they could assist me with. Again they were extremely kind and I appreciated their ability to not come on with the "cop attitude". In fact I called the station afterwards and commended the officers.
BUT really folks it took 1 motorcucle policeman and 2 patrol cars with 2 men in each of them to respond to a relatively benign situation.
It was a pretty hairy behavior but it passed as they all do. I am more sorry for Dakota and what his head must go through when something like that happens. ONE THING I KNOW FOR SURE is he CANNOT help himself at that point.
Finally if more people would stop judging with their eyes and really consdering others and their situations, we would all be better off. In particular a disability is a disability is a disability. If some has cancer you do not love them any less, if some one has a heart problem you do not love tham any less,If someone has Autism YOU DO NOT LOVE THEM ANY LESS!
this was our first encounter with the poice and I certainlu hope our last.I have such a great fear that they will try to find a reason to take Dakota, That day will never come as long as I have a breathe left in my body!
Monday, March 1, 2010
3 good days
Well it may not seem like much to most of you but we have had 3 good days. It makes me very happy.
Since just before Christmas there has been a lot of turmoil and high emotional drama running rampant through our home. It has been tearing me up---
There is no Mother that wants to see her child in pain or emotional stress and when it is associated with a lifelong disorder it effects you on so manylevels it is almost indescribable. Its like one of the Death Eaters from Harry Potter has swooped down and is literally sucking the life right out of you as you lay there helpless.
We have recently seen the doctor and have discussed some options and perhaps some of those are helping but I chose to believe that it is just the phase--- phasing out. We are trying a slight increase in the meds and Ihave started him on a sub'lingual B-12 supplement. Don want to do too much at a time cuz then you wont be able to figure out what caused the improvement.
For now I will just take the 3 days and be Happy
Since just before Christmas there has been a lot of turmoil and high emotional drama running rampant through our home. It has been tearing me up---
There is no Mother that wants to see her child in pain or emotional stress and when it is associated with a lifelong disorder it effects you on so manylevels it is almost indescribable. Its like one of the Death Eaters from Harry Potter has swooped down and is literally sucking the life right out of you as you lay there helpless.
We have recently seen the doctor and have discussed some options and perhaps some of those are helping but I chose to believe that it is just the phase--- phasing out. We are trying a slight increase in the meds and Ihave started him on a sub'lingual B-12 supplement. Don want to do too much at a time cuz then you wont be able to figure out what caused the improvement.
For now I will just take the 3 days and be Happy
Subscribe to:
Posts (Atom)