Our day of rest yesterday turned into me doing our post winter potty station cleanup in preparation for power washing of patios yesterday afternoon. I tried not to think about the consequences of it all while doing it, but boy I felt it last night and today! I was glad that was behind me, but like I said it was supposed to be a rest day.
Today we had to get to the bank and then back to the vet to sort out treatment for Thane's Lyme disease. I was grateful I woke up early enough that we could get out the door before the heat really hit for Thane. I knew doing both these errands could spell trouble for Thane's allergies and fatigue issues so other than his first morning walk routine to the bus, I wanted to keep extra walking to a minimum. Intentions were good- reality was not so much that way.
We boarded the bus to a driver who knows us well. I told her where I wanted her to be sure to let me off. Last week she missed our stop after assuring me she would get us there. Due to the one way street layout, inaccessible walk signal buttons, and non-ADA compliant bus stops in conjunction with ramp designed buses, we had to go to the max stop to get a safe enough place to de-board. It was nice and we have done that walk back to Winco before, but it was not essential- if you know what I mean.
Today I happened to get the same driver. I told her where we needed off and she assured me she would get us there. What do you know? She passed our stop again and then accused me of falling asleep! I wanted to bite her head off because today of all days we did not need this. Not only did she pass our stop, but there was no sidewalk for us to travel back on the roadway. She said it was wide and called the ramp a little steep. Her idea of a little steep leaves much to be desired! It was so steep that Thane had to grip the ramp tread to keep himself slow enough to safely guide me down. Once we got down, I was relieved to be in one piece. The next part got even hairier though. Her idea of wide shoulder and mine while working with a guide dog greatly differ. Thane did great but there was this problem- the cars turning right from the street we were headed for. These cars turn right into the path we were on. Thane must have done four or five traffic checks before some driver had the courtesy to wait for us to get up on the curb to cross the street. The next crossing we had to make the walk signal was completely unreachable so we had to go with the cars without a walk signal. Boy was I glad when we got to the bank in one piece!
Heading home, I had a different driver. He was really great though I don't recall him from any past bus rides. I judged the time well and reminded him about five minutes before we got to our stop, but he had remembered it any way. Sometimes one can judge the time like this, but when its busy and the bus loses time, its impossible for a DB person to know how close you might be because the GPS street announcer (if you can even hear it at all) is so distorted, there is no way you can tell what it is saying.
The vet was swamped today. They had been all week evidently. She had tried to fax me something today and it failed because I was not expecting it, nor was I even home to get it. In the end, we used one of the other workers as a bit of a go between (between the vet and myself) to get things sorted out to start Thane's treatment process for Lyme.
One thing that was so funny was that I was sitting kind of in a corner today because there was not room for our typical setup when we got there. The gal who was helping us, thought I left Thane home. She was trying to find out when I was going to bring him and I did not understand what she was saying as some of those dogs were so noisy! It seemed like Thane was the only dog with training at all. Anyway things quieted down when she came back the next time to talk with me at which point when she asked that question again, I pointed down beside me saying, he's right here. She looked over the counter and was shocked at his quietude. We got the fresh weight they needed on him just to be precise for his prescription, then we got to head home.
We were going to shortcut it home, but irregardless of what route we took, we had to use the crosswalk with no walk signal. It has flashing lights for the cars to stop. This crosswalk is usually uneventful, but not so today! Boy, Thane must have gotten tired of traffic checking me today!
After washing Thane down for his allergies, he took a nice long nap while I dealt with setting up my fax and the subsequent issues in providing payment information to the compounding pharmacy.We played a bit afterwards and in short intervals here and there throughout the afternoon, but honestly I see how zapped he gets now and hope that his meds get here sooner than I anticipate them to.
Showing posts with label Deafblind. Show all posts
Showing posts with label Deafblind. Show all posts
01 July 2011
29 June 2011
My Life as a Deafblind Individual
This week, as it turns out, is Deafblind Awareness Week. This was news to me. I decided I would write my thoughts about what it means to me to be deafblind.
There are many variations of deafblindness. Some people are totally deaf and totally blind. That said, that form of deafblindness is rare. Many like myself who are deafblind have some sight and hearing remaining, but can't decipher what they are seeing or hearing or can't do so without much concentration.
I live a secluded deafblind life. I don't have friends IRL who are deafblind because of my MCS and where I live. There is not a large deaf or deafblind community here- so culturally I am like anyone of you. I just have to work hard to fit into a world that functions to high degrees on sight and hearing senses.
I miss the deaf community experiences I had in California. It never donned on me just how much I was leaving behind when I packed up Met and my belongings and headed off to Oregon where I've left that culture behind and have had to live like a hearing sighted person to fit in- especially into family. It hasn't been easy but I have adjusted.
So what's my life like anyway?
I am profoundly deaf. I can make out what some people say as long as they face me, have no accent or speech impediment, and there is no background noise. I can wear hearing aids for the essentials, but due to EMF sensitivity, the consequences of doing this can be high for me; thus I opt against wearing them for anything that I can get by with my guide dogs sense of sound for. Sometimes its great being deaf because I can tune out things that others find really annoying. Other times, sounds that I can hear, send me over my rocker if you know what I mean- like fireworks (but those I hear minimally at best now thankfully!) Progressive deafness has its moments of being a blessing and then moments when it feels like a curse. Most times, I like my quiet- perhaps because I have lived at this level for so many years of my life.
My eye disease is not common, but has the impact of a distorted jigsaw puzzle with most of the pieces missing. The pieces I do make out, I have no idea what they really are, how close to me they are, or how far to the right or left they may be. By all measures of functionality, what I do see, does me no good.Its been harder to adjust to my blindness then to my deafness- perhaps because my blindness came later and ended many enjoyable past times, took away my ability to see pictures, and almost took away every hobby I had since my MCS (but not quite)
I don't sit at home and twiddle my thumbs though. grin Instead I live my life independently. I ride the fixed route bus and max trains, go to the store, to the bank, to the Drs, to the Veterinarians, to take leisure walks, to experience new routes in new locals. I am like anyone else except I just need to use a tactile mobility aid to judge traffic, braille compass to judge directions, and my guide dog to navigate the path we need to take- and yes, every once in a while save me from people who drive carelessly, or who interfere as we are walking down the sidewalk or trying to cross a street because they want to know all about my dog or tell me how they have one just like him at home.
This life I live certainly isn't the one I envisioned when I graduated from highschool, but its a good life. When I am not out in the community, I am home resting, training my dog, doing laundry, cleaning my home, making my meals, sewing new gear for my guide dog or clothes for myself, or best of all- playing with Thane. Playing ball is Thane's most favorite past time thing to do.
In my dreams I would be able to find an ASL teacher to help me learn tactile ASL so I could understand more easily what is being said at appointments, but with MCS that is not in the cards. Before MCS, before service dogs were in my life, before I was legally blind, I had taken two semesters of ASL. I was able to benefit from it in classes but with my visual impairment my comprehension level from a distance was minimal. As a result of this difficulty, I preferred the captioning method.
I don't know what the future holds for me with my progressive dual sensory losses- whatever it entails though, I am sure I will figure a way to continue to live my life in independent fashion- cuz afterall I hate waiting for people to do things for me. I am an independent deafblind gal who just loves to live my life without having to lean on others. I guess its just who I am. grin
There are many variations of deafblindness. Some people are totally deaf and totally blind. That said, that form of deafblindness is rare. Many like myself who are deafblind have some sight and hearing remaining, but can't decipher what they are seeing or hearing or can't do so without much concentration.
I live a secluded deafblind life. I don't have friends IRL who are deafblind because of my MCS and where I live. There is not a large deaf or deafblind community here- so culturally I am like anyone of you. I just have to work hard to fit into a world that functions to high degrees on sight and hearing senses.
I miss the deaf community experiences I had in California. It never donned on me just how much I was leaving behind when I packed up Met and my belongings and headed off to Oregon where I've left that culture behind and have had to live like a hearing sighted person to fit in- especially into family. It hasn't been easy but I have adjusted.
So what's my life like anyway?
I am profoundly deaf. I can make out what some people say as long as they face me, have no accent or speech impediment, and there is no background noise. I can wear hearing aids for the essentials, but due to EMF sensitivity, the consequences of doing this can be high for me; thus I opt against wearing them for anything that I can get by with my guide dogs sense of sound for. Sometimes its great being deaf because I can tune out things that others find really annoying. Other times, sounds that I can hear, send me over my rocker if you know what I mean- like fireworks (but those I hear minimally at best now thankfully!) Progressive deafness has its moments of being a blessing and then moments when it feels like a curse. Most times, I like my quiet- perhaps because I have lived at this level for so many years of my life.
My eye disease is not common, but has the impact of a distorted jigsaw puzzle with most of the pieces missing. The pieces I do make out, I have no idea what they really are, how close to me they are, or how far to the right or left they may be. By all measures of functionality, what I do see, does me no good.Its been harder to adjust to my blindness then to my deafness- perhaps because my blindness came later and ended many enjoyable past times, took away my ability to see pictures, and almost took away every hobby I had since my MCS (but not quite)
I don't sit at home and twiddle my thumbs though. grin Instead I live my life independently. I ride the fixed route bus and max trains, go to the store, to the bank, to the Drs, to the Veterinarians, to take leisure walks, to experience new routes in new locals. I am like anyone else except I just need to use a tactile mobility aid to judge traffic, braille compass to judge directions, and my guide dog to navigate the path we need to take- and yes, every once in a while save me from people who drive carelessly, or who interfere as we are walking down the sidewalk or trying to cross a street because they want to know all about my dog or tell me how they have one just like him at home.
This life I live certainly isn't the one I envisioned when I graduated from highschool, but its a good life. When I am not out in the community, I am home resting, training my dog, doing laundry, cleaning my home, making my meals, sewing new gear for my guide dog or clothes for myself, or best of all- playing with Thane. Playing ball is Thane's most favorite past time thing to do.
In my dreams I would be able to find an ASL teacher to help me learn tactile ASL so I could understand more easily what is being said at appointments, but with MCS that is not in the cards. Before MCS, before service dogs were in my life, before I was legally blind, I had taken two semesters of ASL. I was able to benefit from it in classes but with my visual impairment my comprehension level from a distance was minimal. As a result of this difficulty, I preferred the captioning method.
I don't know what the future holds for me with my progressive dual sensory losses- whatever it entails though, I am sure I will figure a way to continue to live my life in independent fashion- cuz afterall I hate waiting for people to do things for me. I am an independent deafblind gal who just loves to live my life without having to lean on others. I guess its just who I am. grin
31 May 2011
Independent Travel When Acceptance and Disabilities Collide
People who are blind rely on other senses to travel safely and independently. As a deafblind individual, I am already down one sense. About 1 1/2 years ago, I decided that my ability to reduce reactions meant more to me than what people might think about my change from a carbon filtered mask to a respirator mask (AKA gas mask). My reactions were greatly reduced though I had to be careful about duration of use because it can induce some oxygen deprivation problems if worn too long.
I love that I can go to town with Thane and come home able to still play with him after some rest time albeit a bit less energetic in my play. I am not left feeling death warmed over. I am not sent to bed for the next couple days. I am not left unable to give Thane the walks he needs or more training. Of course this is the general scope of things. There are still some exposures that do set me back but those are mostly ones that hit in my close home vicinity- ie things that expose my home as opposed to things I am exposed to when shopping or having an adventure.
What I did not realize or anticipate was that I had actually been relying on the smells that were merely subdued by my carbon mask to determine some of my safer navigation. Thane and I had some real roller coaster times during his first couple years of work. Sometimes I took errand runs without him due to health, stress level, or injuries. It was most noticeable in the absence of Thane, just how much the change to the respirator mask altered my awareness of my surroundings. For instance with the carbon mask, I still smelled exhaust and could tell how close it was to me based on intensity of the smell as I approached driveways. With the respirator mask I really have to mentally slow down and feel the changes in the sidewalk surface; paying close attention to the time its taken me to travel without altering my pace which would then alter how long it takes to get to each drive entrance along the sidewalk path.
Before I received a wheelchair with a headrest on it, my neck would never have been strong enough to withstand the weight of a respirator mask. Thanks to this change which I had qualified for even with my previous chair but rejected because in my mind I was not that disabled. Yes, I was that disabled but its all a matter of perception. I did not want to *look* that disabled. I was still dealing with a lot in my path towards acceptance of my disabilities. I was still living with continued deterioration. I would come to accept myself for who I had become and BAM! another deterioration mode would set in and the grief process would begin anew.
By the time I got my present chair though (and subsequent backup chair), I had come to terms with accepting me for who I was- at least in terms of my quad and para parameters. I would come to realize however that a lot of my acceptance issues were related to my families lack of acceptance. Oh they play a good act, but when it comes right down to the various aspects of the causes of my disabilities and/ or the sensory disabilities- lets just say they live in the land of denial with the largest font all caps one could ever achieve.
About two years ago when I was at my folks place in their yard one summer day, my dad tried to show me something clear across the other end of the yard. Their yard is the length of three yards on their back fence line. When I *reminded* him that I could not see that and was in fact, BLIND, his response to me was that if I could not see that I had no business leaving my home alone. I pointed to Thane laying at my side as I *reminded* him that I did not leave it alone but with a great guide dog! His response to me still stings but I have come to accept that he will just be this way. This is nothing along the lines of parents not wanting their children to suffer, but absolute denial. When my mom had cataracts and entered legal blindness albeit very temporary, you should have heard her carry on about her blindness! MY GOODNESS! In private, I thought it was just TOO FUNNY!
Until I could separate myself from looking for my parents acceptance of who I was, I was not going to be able to accept myself or my disabilities- especially the deterioration in the sensory side of things with my deafblindness. I really have to hand it to my friend Rox'E at The Doghouse, Let the Fur Fly blog. As our friendship grew stronger, I learned to find acceptance of the progression of my dual sensory loss but most especially about my blindness. I had called myself VI for so long- well beyond the point of legal blindness. I could not come to terms with reality- that of the fact that I was blind and the progression at that point was on a fast track.
Through Rox'Es acceptance of herself as a deafblind individual, I began to understand that I did not need my parents acceptance to find my own and thus change my outlook on who I am and could be as an individual with multiple disabilities- many of which were proof of my own tenacity and inability to let anything get between me and living my life.
I count myself fortunate to have the friends I do- they have shown me that I don't need others acceptance, only my own.
I love that I can go to town with Thane and come home able to still play with him after some rest time albeit a bit less energetic in my play. I am not left feeling death warmed over. I am not sent to bed for the next couple days. I am not left unable to give Thane the walks he needs or more training. Of course this is the general scope of things. There are still some exposures that do set me back but those are mostly ones that hit in my close home vicinity- ie things that expose my home as opposed to things I am exposed to when shopping or having an adventure.
What I did not realize or anticipate was that I had actually been relying on the smells that were merely subdued by my carbon mask to determine some of my safer navigation. Thane and I had some real roller coaster times during his first couple years of work. Sometimes I took errand runs without him due to health, stress level, or injuries. It was most noticeable in the absence of Thane, just how much the change to the respirator mask altered my awareness of my surroundings. For instance with the carbon mask, I still smelled exhaust and could tell how close it was to me based on intensity of the smell as I approached driveways. With the respirator mask I really have to mentally slow down and feel the changes in the sidewalk surface; paying close attention to the time its taken me to travel without altering my pace which would then alter how long it takes to get to each drive entrance along the sidewalk path.
Before I received a wheelchair with a headrest on it, my neck would never have been strong enough to withstand the weight of a respirator mask. Thanks to this change which I had qualified for even with my previous chair but rejected because in my mind I was not that disabled. Yes, I was that disabled but its all a matter of perception. I did not want to *look* that disabled. I was still dealing with a lot in my path towards acceptance of my disabilities. I was still living with continued deterioration. I would come to accept myself for who I had become and BAM! another deterioration mode would set in and the grief process would begin anew.
By the time I got my present chair though (and subsequent backup chair), I had come to terms with accepting me for who I was- at least in terms of my quad and para parameters. I would come to realize however that a lot of my acceptance issues were related to my families lack of acceptance. Oh they play a good act, but when it comes right down to the various aspects of the causes of my disabilities and/ or the sensory disabilities- lets just say they live in the land of denial with the largest font all caps one could ever achieve.
About two years ago when I was at my folks place in their yard one summer day, my dad tried to show me something clear across the other end of the yard. Their yard is the length of three yards on their back fence line. When I *reminded* him that I could not see that and was in fact, BLIND, his response to me was that if I could not see that I had no business leaving my home alone. I pointed to Thane laying at my side as I *reminded* him that I did not leave it alone but with a great guide dog! His response to me still stings but I have come to accept that he will just be this way. This is nothing along the lines of parents not wanting their children to suffer, but absolute denial. When my mom had cataracts and entered legal blindness albeit very temporary, you should have heard her carry on about her blindness! MY GOODNESS! In private, I thought it was just TOO FUNNY!
Until I could separate myself from looking for my parents acceptance of who I was, I was not going to be able to accept myself or my disabilities- especially the deterioration in the sensory side of things with my deafblindness. I really have to hand it to my friend Rox'E at The Doghouse, Let the Fur Fly blog. As our friendship grew stronger, I learned to find acceptance of the progression of my dual sensory loss but most especially about my blindness. I had called myself VI for so long- well beyond the point of legal blindness. I could not come to terms with reality- that of the fact that I was blind and the progression at that point was on a fast track.
Through Rox'Es acceptance of herself as a deafblind individual, I began to understand that I did not need my parents acceptance to find my own and thus change my outlook on who I am and could be as an individual with multiple disabilities- many of which were proof of my own tenacity and inability to let anything get between me and living my life.
I count myself fortunate to have the friends I do- they have shown me that I don't need others acceptance, only my own.
29 May 2011
Different Ways for Different Times
As an owner trainer of my service dogs, I get many concepts when it comes to training my dogs. I understand that even within a same breed, individual dogs can learn concepts differently, that they may need me to alter my approach to training, that they may fit within the realm of softness to hardness differently in one type of scenario than they are as a general overall principle for them as an individual, that one dog may have certain areas where they follow your lead and other areas or times where their stubbornness can go off the charts.
I won't say these aspects are always easy or that I work with and through them in a perfect fashion. That has been far from the case. It takes the training of many dogs of different breeds and temperaments for any trainer to be truly skilled at what they do. Much of what I have done, has come through much trial and error. In Thane's case it was also clouded by grief and the mentality of trying to mold Thane into Met.
But this post is not so much about these factors- as these factors concentrate around the dog side of the training and team- much of which at this stage with Thane I have figured out the direction and approach that works best or am flexible enough to follow the lead he is showing me to get to the place I seek to be. I have figured out that he is a soft dog who vibes off me which has made me a much better handler and individual in dealing with stressful situations. This post is about the handler side of things. It is about dealing with multiple disabilities that often bring with them much fluctuation in my functional day to day life.
I don't talk much about my disabilities in my blog because frankly I just want a place where I am seen for the inside pages as opposed to the book cover of the physical shell. That all said, I am beginning to feel the need to let down my guard as others have done. Perhaps its because by letting down my guard, I can share with you the kinds of training that can truly prepare one for the unknown- so here goes.
When you wake up each morning, you probably know what you are going to feel like, how much energy you will have, how your limbs will function, whether or not you can get to point B without smacking into a wall from vertigo or any other myriad of functions that as an able bodied healthy person you probably take for granted. This isn't the side of the coin that I deal with however.
I have multiple disabilities and have for more years than not. I am a deafblind individual living with incomplete quadriplegia, complete paraplegia, MCS (multiple chemical sensitivities), low kidney function as a reminder of my chemo days, asthma that can rapidly spike to a level of it being hard to communicate secondary to a variety of triggers from my MCS, and a problem that to this day no one has the answers to. It comes on with minimal notice and can affect me in a myriad of ways- feeling like blood sugar is crashing or I'm going to pass out without typical treatments of such bearing any changes on the sensation, vertigo, loss of where I am in space, episodes of complete deafness and at the least greater level of blindness, confusion of how I got where I am- like being in a daydream but not having any daydream of thoughts to cause it. Its believed its linked to the cause of my blindness and to the cause of the further deterioration of my deafness but not the initial cause of that condition. I've accepted that possibility since it is viral in nature and the cause of my GI system roller coaster ride.
My disabilities have several causes working together from birth or shortly thereafter to accident causation to disease. The mere fact that I am alive is a testament to my tenacity and stubbornness but at the same time that survival is a factor in the progressive nature of some of my disabilities and even the causation of others.
The month of May has been MCS awareness month. You'd think I would be shouting out about it every day. Instead I sat back and let others do the shouting such as my dear friend Sharon at After Gadget blog. Its stupid I know, but I feel like it takes all the spoons I can muster to live my life with MCS- I'm not going to focus on it in the one place I really have to escape from the trappings of my disabilities and diseases. So there you have it- call it what you will- denial, anger, escape- I just don't want myself to be thought of as the woman with all these diseases and disabilities that it seems too unbelievable to be true that someone like her/ like me can function as independently as I do amidst all this crap that quite frankly, SUCKS!
This is just a fraction- a bit more about what I deal with- but you really can't even begin to fathom what all of this does to one- the amount of energy it takes to do the things I must to live my life. For instance I am severely impacted by smoke, lawn mowing (for up to a week after its been cut), amongst other things. Yesterday the new and very inconsiderate neighbor across the street spent nearly six hours open burning in the field across the way. My lungs are screaming, my voice volume is so low that at times Thane can not hear me and frankly I feel so weak and out of it unable to find my place in space easily if I change position. To say I feel like HELL is an understatement. This is just a really minute piece of what I deal with. If this was not bad enough, mowing has begun both across the street and at the complex I live in. I did other things today that used way more spoons than I had to give, but necessary things nonetheless.
I felt the need to share these aspects before I entered into the real theme of what I am wanting to convey in this post- that of working differently with ones service animal as life's twists and turns bombard you. See some people ask me when I train various skills if they are things I really need or if I am training them to keep Thane's mind stimulated and his stress level from life in an apartment in an area of the country where someone forgot to tell the sky that we should be in summer weather now.
Reality is that some of the skills are only needed on occasion and that some of them are not things that I presently need. I know from experience living in my body though that every day brings with it differences from the previous day or from the next day- surprises essentially. I never know just what I am going to be like before or even after I pull my paralyzed frame out of bed each day.
Today was one of those bad days where so much was wrong, yet with my redhead here, I achieved much. I have not been able to use my tilt for over a week now because the placement of my skin issue from the close call we had over a week ago is such that excessive pressure is placed on it if I tilt. This brings with it extra spasticity and pain as well as more difficulty breathing even without a trigger to my lung function because not only can't I tilt but I can't use positioning belts and harnesses because they too force too much pressure on my skin. Even my digestion has been affected negatively by not being able to use these things. As a result, I must work with my service dog in very different ways. Had I stopped his training, target practice, and not trained the fun for all type tasks into our routine- the errand we ran today never would have been possible.
With extra spasticity comes a need for my dog to ignore sudden thrusts of the harness handle. It also means that he has to be gentler in his approaches with me that require close contact as well as accepting my bouncing leg when he does the paws command or my hands that might accidentally hit him when I reach out to stroke his head. He has to adapt to my functional changes which includes working differently with me in order to get his harness and coat on and off of him- using paws command instead of standing, as well as frequent adjustments and *how high* with each front paw so that various straps can be positioned in just the perfect place. This is not near as easy as it may sound.
With decreased lung function and a gas mask, it also means that my service dog can not hear me make vocal commands. We have spent the last 6-8 months working some key commands in ASL and/ or home sign just for such occurrences. Though his focus and comprehension is still a work in progress with this approach, we can communicate if we take it slow for tasks related to harness work. Foundation and Obedience commands, we are quite a team with.
Today I was a bit disoriented- meaning I wasn't really sure about distances we'd travel and where we were at along that route. That could be dangerous for a deafblind individual. Thane seems to have a sense of how I am doing. On days when I am really lost like this, he seems to get that *goofing off* just isn't OK. Now when I say goofing off, its more little innuendos of harness pull and speed as well as stubbornness about which route we are going to take. In case you are reading this and do not understand the complexities of working a guide dog- harness pull is not the same thing as pulling on lead. Its an important aspect in the work a guide dog performs. A post on this topic is in the works.
Thane spent much of the day realizing I needed just a bit more today- a bit more involvement in household tasks, a bit more involvement in how I play with him, a bit more patience in how much I interacted, a bit more patience with me in realms of errors on my part in communication.
He's a tough and smart little cookie. Without Thane in my life and trained as much as he is (that training is so far from over) I really would not be living the independent life I am today. I would be forced to deal with evaluations for care workers by a worker who doesn't consider my MCS when it comes to her *bathing in everything scented* approach to her own personal care. Basically my disability would make her make changes that frankly she aint going to do. Yes that violates my rights but since I prefer my independent life and could never get workers in our area to comply with whats necessary for life with MCS, I choose not to spend my spoons educating and/ or fighting with a system that is more broke than anyone could fathom. My care worker is my wonderful little redhead smile I hate to think where I would be without this little guy curled up at my feet.
What kind of day will tomorrow bring with it? Will I wake up invigorated or will it be another day to lay at the foot of my bed watching JAG or maybe 4400 re-runs from tapes I made over the years, while telling Thane how sorry I am about not taking him for a walk or to town. Only tomorrow morning will tell that tale.
I won't say these aspects are always easy or that I work with and through them in a perfect fashion. That has been far from the case. It takes the training of many dogs of different breeds and temperaments for any trainer to be truly skilled at what they do. Much of what I have done, has come through much trial and error. In Thane's case it was also clouded by grief and the mentality of trying to mold Thane into Met.
But this post is not so much about these factors- as these factors concentrate around the dog side of the training and team- much of which at this stage with Thane I have figured out the direction and approach that works best or am flexible enough to follow the lead he is showing me to get to the place I seek to be. I have figured out that he is a soft dog who vibes off me which has made me a much better handler and individual in dealing with stressful situations. This post is about the handler side of things. It is about dealing with multiple disabilities that often bring with them much fluctuation in my functional day to day life.
I don't talk much about my disabilities in my blog because frankly I just want a place where I am seen for the inside pages as opposed to the book cover of the physical shell. That all said, I am beginning to feel the need to let down my guard as others have done. Perhaps its because by letting down my guard, I can share with you the kinds of training that can truly prepare one for the unknown- so here goes.
When you wake up each morning, you probably know what you are going to feel like, how much energy you will have, how your limbs will function, whether or not you can get to point B without smacking into a wall from vertigo or any other myriad of functions that as an able bodied healthy person you probably take for granted. This isn't the side of the coin that I deal with however.
I have multiple disabilities and have for more years than not. I am a deafblind individual living with incomplete quadriplegia, complete paraplegia, MCS (multiple chemical sensitivities), low kidney function as a reminder of my chemo days, asthma that can rapidly spike to a level of it being hard to communicate secondary to a variety of triggers from my MCS, and a problem that to this day no one has the answers to. It comes on with minimal notice and can affect me in a myriad of ways- feeling like blood sugar is crashing or I'm going to pass out without typical treatments of such bearing any changes on the sensation, vertigo, loss of where I am in space, episodes of complete deafness and at the least greater level of blindness, confusion of how I got where I am- like being in a daydream but not having any daydream of thoughts to cause it. Its believed its linked to the cause of my blindness and to the cause of the further deterioration of my deafness but not the initial cause of that condition. I've accepted that possibility since it is viral in nature and the cause of my GI system roller coaster ride.
My disabilities have several causes working together from birth or shortly thereafter to accident causation to disease. The mere fact that I am alive is a testament to my tenacity and stubbornness but at the same time that survival is a factor in the progressive nature of some of my disabilities and even the causation of others.
The month of May has been MCS awareness month. You'd think I would be shouting out about it every day. Instead I sat back and let others do the shouting such as my dear friend Sharon at After Gadget blog. Its stupid I know, but I feel like it takes all the spoons I can muster to live my life with MCS- I'm not going to focus on it in the one place I really have to escape from the trappings of my disabilities and diseases. So there you have it- call it what you will- denial, anger, escape- I just don't want myself to be thought of as the woman with all these diseases and disabilities that it seems too unbelievable to be true that someone like her/ like me can function as independently as I do amidst all this crap that quite frankly, SUCKS!
This is just a fraction- a bit more about what I deal with- but you really can't even begin to fathom what all of this does to one- the amount of energy it takes to do the things I must to live my life. For instance I am severely impacted by smoke, lawn mowing (for up to a week after its been cut), amongst other things. Yesterday the new and very inconsiderate neighbor across the street spent nearly six hours open burning in the field across the way. My lungs are screaming, my voice volume is so low that at times Thane can not hear me and frankly I feel so weak and out of it unable to find my place in space easily if I change position. To say I feel like HELL is an understatement. This is just a really minute piece of what I deal with. If this was not bad enough, mowing has begun both across the street and at the complex I live in. I did other things today that used way more spoons than I had to give, but necessary things nonetheless.
I felt the need to share these aspects before I entered into the real theme of what I am wanting to convey in this post- that of working differently with ones service animal as life's twists and turns bombard you. See some people ask me when I train various skills if they are things I really need or if I am training them to keep Thane's mind stimulated and his stress level from life in an apartment in an area of the country where someone forgot to tell the sky that we should be in summer weather now.
Reality is that some of the skills are only needed on occasion and that some of them are not things that I presently need. I know from experience living in my body though that every day brings with it differences from the previous day or from the next day- surprises essentially. I never know just what I am going to be like before or even after I pull my paralyzed frame out of bed each day.
Today was one of those bad days where so much was wrong, yet with my redhead here, I achieved much. I have not been able to use my tilt for over a week now because the placement of my skin issue from the close call we had over a week ago is such that excessive pressure is placed on it if I tilt. This brings with it extra spasticity and pain as well as more difficulty breathing even without a trigger to my lung function because not only can't I tilt but I can't use positioning belts and harnesses because they too force too much pressure on my skin. Even my digestion has been affected negatively by not being able to use these things. As a result, I must work with my service dog in very different ways. Had I stopped his training, target practice, and not trained the fun for all type tasks into our routine- the errand we ran today never would have been possible.
With extra spasticity comes a need for my dog to ignore sudden thrusts of the harness handle. It also means that he has to be gentler in his approaches with me that require close contact as well as accepting my bouncing leg when he does the paws command or my hands that might accidentally hit him when I reach out to stroke his head. He has to adapt to my functional changes which includes working differently with me in order to get his harness and coat on and off of him- using paws command instead of standing, as well as frequent adjustments and *how high* with each front paw so that various straps can be positioned in just the perfect place. This is not near as easy as it may sound.
With decreased lung function and a gas mask, it also means that my service dog can not hear me make vocal commands. We have spent the last 6-8 months working some key commands in ASL and/ or home sign just for such occurrences. Though his focus and comprehension is still a work in progress with this approach, we can communicate if we take it slow for tasks related to harness work. Foundation and Obedience commands, we are quite a team with.
Today I was a bit disoriented- meaning I wasn't really sure about distances we'd travel and where we were at along that route. That could be dangerous for a deafblind individual. Thane seems to have a sense of how I am doing. On days when I am really lost like this, he seems to get that *goofing off* just isn't OK. Now when I say goofing off, its more little innuendos of harness pull and speed as well as stubbornness about which route we are going to take. In case you are reading this and do not understand the complexities of working a guide dog- harness pull is not the same thing as pulling on lead. Its an important aspect in the work a guide dog performs. A post on this topic is in the works.
Thane spent much of the day realizing I needed just a bit more today- a bit more involvement in household tasks, a bit more involvement in how I play with him, a bit more patience in how much I interacted, a bit more patience with me in realms of errors on my part in communication.
He's a tough and smart little cookie. Without Thane in my life and trained as much as he is (that training is so far from over) I really would not be living the independent life I am today. I would be forced to deal with evaluations for care workers by a worker who doesn't consider my MCS when it comes to her *bathing in everything scented* approach to her own personal care. Basically my disability would make her make changes that frankly she aint going to do. Yes that violates my rights but since I prefer my independent life and could never get workers in our area to comply with whats necessary for life with MCS, I choose not to spend my spoons educating and/ or fighting with a system that is more broke than anyone could fathom. My care worker is my wonderful little redhead smile I hate to think where I would be without this little guy curled up at my feet.
What kind of day will tomorrow bring with it? Will I wake up invigorated or will it be another day to lay at the foot of my bed watching JAG or maybe 4400 re-runs from tapes I made over the years, while telling Thane how sorry I am about not taking him for a walk or to town. Only tomorrow morning will tell that tale.
27 March 2011
Going Against the Grain
I work with and love the Border Collie breed. When I trained my first service dog Chimette, a Border Collie Shepherd cross who looked and acted very much Border Collie, I focused initially on training him to be my ears in the world. As a result, no one thought twice or made any comment whatsoever along the lines of whether or not he was the right breed for the job. As my disabilities progressed, Chimette was trained as a guide dog, hearing dog, medical alert dog, and mobility service dog. No one over all the years we were training or partnered together made so much as a comment about his fitness for the job at hand based upon his breed- perhaps because he was first a hearing dog.
When Chimette passed away though, things were very different for me. I had a host of disabilities to adapt to and the need to prioritize where to focus my training first when Thane came into my life. Though we dabbled in hearing dog training during those first winter months together that kept us from doing a lot of training in the community, the first focus of training was to mold Thane into my guide dog. Thane is a purebred Border Collie from strong herding lineage. In my pursuit of guide dog training and the partnership that has followed, I encountered so many mystified people. People were often surprised that I was going against his natural instincts to mold him into my future guide. It was more rare to encounter people who were not surprised by this decision of mine than to encounter those who were. Some of these folks, like his Ophthalmologist, were just downright curious while others just had to voice their opinions about how insensitive I was being to Thane by asking him to curtail his natural instincts. Not so fast! Thane's natural instincts are part of what makes him the perfect candidate for the job.
As a deafblind individual my dogs training is dramatically different than that of a guide dog trained for a blind individual with normal hearing. I allow my guides a certain amount of leniency in focus. I do this by encouraging their awareness of important things with praise, while simply ignoring or using our leave it command for things that are unnecessary alerts. The crux is that they need to not only safely guide me around obstacles and through traffic, but they need to share with me the important things going on around us wherever we may be. I want to know, for instance, if someone is walking close behind us or if kids are playing on the sidewalk ahead so we can alter our pace, take another route, or change our direction entirely for safety reasons. I want to know when emergency vehicles are coming so that I don't get caught crossing a street when they are in route to an emergency. Though all of this training does not happen initially, praising for his alertness to important cues can be the difference between safe travels as a team and injury or becoming the victim of a predator. Chimette saved me from a stalker who actually turned around and raped another person. Where would I have been then if all I had asked of my dog was to guide me around obstacles, but ignored my deafness in his training? I positively love my dogs alertness to his environment. Breed appropriateness for the task at hand is all in ones perspective.
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