This entry will be a mish-mash of subjects. I am in a reflective mood; it's late at night (or early in the morning actually; it's midnight!), and I find that I think all sorts of "deep" thoughts late at night, and am often in the mood to share some of them. So here I go.
First of all, I am ruminating about the procedure I had on my neck a couple of weeks ago, which doesn't have a thing to do with Ian except it was meant to decrease my pain levels, which does help with daily tasks and impacts how much I can visit my son. I had facet injections in my neck, and although it has helped with the pain, it has come with quite a price. They injected steroids into my neck, and it has strongly affected my mood. I am having terrible mood swings, irritability, insomnia, and a general feeling of being on pins and needles. So here is the conundrum: have the procedure and have less pain, but an increase in bitchiness, or don't have the procedure and have more pain, but be nicer and kinder. After feeling the way I have for the past two weeks, and acting toward my husband in a manner that appalls me, I almost think I would rather deal with the pain with medications than feel this way. I am not sure how long it takes for the steroids to completely leave my system, but I am hoping it's SOON. I am experiencing an increase in pain already, so I'm not sure it's worth the two weeks of relative painlessness if I have to deal with all these raging mood swings. Ugh. I hate to be ungrateful about the pain relief (which is wonderful), but since it was of a relatively short duration, I feel that it may not be worth it in the long run. I can't remember if I felt so moody and mean the last time I had this done, but it's truly icky. Poor John! I tend to be nice to everybody else, and take out all my frustrations and anger on my beloved spouse. Not good.
Now this next part does concern Ian. I am having issues with one of his caregivers. As someone who rarely has problems getting along with most people, it's an odd experience to find that someone just simply does not like me, and probably will never like me. And I don't know why. This caregiver is very terse with me, and I have learned to simply greet her when I arrive, and then not talk to her for the entire time I'm with Ian. So odd. Today when I was there, I noticed that one of Ian's roommates had a distinct poopy smell, and after going to the other caregiver to tell him about it, he directed me to "Cora" (NOT her real name!) Cora told me that she was busy with another roommate, so I decided to take matters into my own hands. I noticed that the poop was coming out of his pull up and was creeping up his back, and that he was starting to smear it with his fingers. I took him into his bathroom, and discovered a great deal of poop all over his toilet. I directed the roommate to take off his pull-up and had started to clean up the poop on the toilet when Cora came in the room and started chastising me. She said (in a very stern voice), "Please don't do my job!" She was angry that I had took it upon myself to tackle the poop situation, and I'm honestly flummoxed because she had just told me she was busy with something else, so I thought I would be helpful. It was a good three minutes before she came in to deal with the situation, so I think she didn't start to help until she heard me in the bathroom. For some reason she sees me as a threat and a nuisance, and I can't for the life of me understand why. I admit, I was hurt and puzzled by her reaction, but I left her with all the poop, and went out and hung out with my son.
I am the kind of person who just pitches in when something needs to be done. I don't care how "icky" the job is; I'm there, I'll do it. I LIKE to help for goodness sake! I know how difficult it is to care for these boys, how little the staff is paid, and how much is on their plates. If I can take a small amount off of their shoulders, it pleases me to do so. Sigh. I believe that this is probably good for my ego, and is a learning experience in love. Everything is grist for the mill (as Ram Dass has said.) If I am a Christian, and am following Christ, then this is my golden opportunity to love someone who is hard to understand. There is a reason she is the way she is, and if I can see her with the eyes of LOVE, I can hopefully understand. Cora is in my prayers, and I find if you pray for someone, your anger toward them evaporates, and compassion and understanding fill the place where hurt and anger used to live.
On a good note, Ian was in a lovely place this evening. He played with his legos, bead toy, musical toys, and watched videos. I sat with him on the couch and held his feet in my lap and stroked them. I also discovered that his roommate (the one with the poopy pull-up!) loves to have his feet stroked as well, so I had two feet clients this evening. Interestingly enough, the third roommate also likes his feet stroked; perhaps that's an autism thing? Liking your feet massaged and stroked?
So much to learn, and so many opportunities to learn it. Please pray that I come to really love Cora and perhaps understand where she is coming from. Help me to know that I am not always going to be liked by everyone, and that if I am NOT liked, it is not the end of the world. I am there for Ian, and that has to remain my focus. If I can befriend his caregivers, all to the better, but if not, then it is all in God's hands, and He will take care of everything. I am always grateful for all the hard work they do, and am glad that I am able to visit as often as I do. God is in control! Praise the Lord!
Monday, April 11, 2016
Saturday, April 2, 2016
I'm not sure what I want to say in this blog post. There is a lot of "stuff" that has been going on for the past few months, but I am hesitant to be as blunt as I would like to be, because there could be negative consequences. If I offend folks in "high places," the outcome could possibly be the same as what happened with Ian's last provider. They got tired of us and of Ian's behaviors, and simply dropped him, and we had to find another provider. It was traumatic for us and for Ian, and after an extensive search, we did find another provider, and for the most part, we are happy with them. But there are...."things".....
I am positive that they have not encountered many parents like John and I. We are very, very involved in Ian's day-to-day life. I am over to his new apartment nearly every day, and I see exactly what is going on. I can see that what was promised has often not come to fruition, and it can be very frustrating. Although I don't doubt the sincerity and the work ethic of those in charge, it just seems that unless John and I are constantly on top of things, and push regularly for what was promised to us, these things just don't get done in a timely matter, or don't get done at all. I don't want to get into specifics here for fear of reprisals, but it's been frustrating and painful.
I have never been one to "rock the boat." My style is to be collaborative and nurturing with Ian's staff and those in charge, and it is very hard for me to be tough and blunt. I usually leave this to my husband, and we are a sort of "good cop, bad cop" team. Unfortunately, my husband is dealing with serious health issues, and can't always be the bad cop. I have to somehow find a way to deal with serious issues in an assertive way without alienating the people who have control over my son's life. I always want to find a way to connect with people; to understand where they are coming from and to appreciate why they do what they do. I pray a lot. I trust in the Lord. But I know I also have to act in my son's best interest at all times.
There are no "bad guys" in this scenario; there seems to simply be a lack of follow through on promises made. I don't understand why this is so, but I have to think that everyone has Ian's and his roommates' best interests at heart, and (being the optimistic person I am) that there is a way to find positive resolutions to the difficulties.
I know I'm being vague, but it is vital that I don't single anyone out or be more specific, as it could detrimentally impact my son's living environment. He is my heart, and his happiness is the most important thing to me. Given his limitations, I want him to have as full and complete a life as possible, and although it seems that everyone is on the same page, that hasn't worked out practically.
If you are the praying type, please pray that I always handle things with compassion, gentleness, and understanding. I truly LOVE everyone that is involved with Ian, and the last thing I would ever want to do is cause anyone pain, anger, or frustration. I have been amazed by many of the staff's loving attitude toward Ian, and I hope they know how much I appreciate all that they do. But I do need to "put on my big girl panties" and stand up for my son when things are not quite right. Oh, and I am NOT expecting perfection, just that what is promised actually happens.
I am typing this late at night, so it may be a bit convoluted. Thank you for your prayers. I am a strong believer in prayer, and certainly I know that God wants the best for Ian, his roommates, and for everyone else involved in his life.
I am positive that they have not encountered many parents like John and I. We are very, very involved in Ian's day-to-day life. I am over to his new apartment nearly every day, and I see exactly what is going on. I can see that what was promised has often not come to fruition, and it can be very frustrating. Although I don't doubt the sincerity and the work ethic of those in charge, it just seems that unless John and I are constantly on top of things, and push regularly for what was promised to us, these things just don't get done in a timely matter, or don't get done at all. I don't want to get into specifics here for fear of reprisals, but it's been frustrating and painful.
I have never been one to "rock the boat." My style is to be collaborative and nurturing with Ian's staff and those in charge, and it is very hard for me to be tough and blunt. I usually leave this to my husband, and we are a sort of "good cop, bad cop" team. Unfortunately, my husband is dealing with serious health issues, and can't always be the bad cop. I have to somehow find a way to deal with serious issues in an assertive way without alienating the people who have control over my son's life. I always want to find a way to connect with people; to understand where they are coming from and to appreciate why they do what they do. I pray a lot. I trust in the Lord. But I know I also have to act in my son's best interest at all times.
There are no "bad guys" in this scenario; there seems to simply be a lack of follow through on promises made. I don't understand why this is so, but I have to think that everyone has Ian's and his roommates' best interests at heart, and (being the optimistic person I am) that there is a way to find positive resolutions to the difficulties.
I know I'm being vague, but it is vital that I don't single anyone out or be more specific, as it could detrimentally impact my son's living environment. He is my heart, and his happiness is the most important thing to me. Given his limitations, I want him to have as full and complete a life as possible, and although it seems that everyone is on the same page, that hasn't worked out practically.
If you are the praying type, please pray that I always handle things with compassion, gentleness, and understanding. I truly LOVE everyone that is involved with Ian, and the last thing I would ever want to do is cause anyone pain, anger, or frustration. I have been amazed by many of the staff's loving attitude toward Ian, and I hope they know how much I appreciate all that they do. But I do need to "put on my big girl panties" and stand up for my son when things are not quite right. Oh, and I am NOT expecting perfection, just that what is promised actually happens.
I am typing this late at night, so it may be a bit convoluted. Thank you for your prayers. I am a strong believer in prayer, and certainly I know that God wants the best for Ian, his roommates, and for everyone else involved in his life.
Saturday, January 23, 2016
Pain. Ugh.
This post will be mostly about ME, and tangentially about my sweet bug. Before I begin, I should do a bit of an update. Ian will be moving from his two-person roommate situation into a three-person one, and will be moving into a new apartment complex. I had the opportunity to look at his new apartment (which he moves into this coming Monday), and am very pleased by its roominess and also its large backyard. I think this will be a positive move for Ian. A three-person set up tends to have more stable staffing, and is better money-wise. I hope to be able to go over tomorrow (Sunday) to help his caregiver and her family move over some small things like his toys, clothes, kitchen items, towels, etc, which leads me into the purpose of this post.
I suffer from a chronic pain condition which waxes and wanes like the moon. Some days (even weeks at a time), the pain is very manageable, and I can live a more-or-less "normal" life. The source of my pain is primarily in my neck (I will spare you the medical details; suffice it to say, my neck is a mess), but it radiates into my head and causes severe headaches. Secondarily, I have a mild case of fibromyalgia, chronic fatigue syndrome, and Hashimoto's disease (basically low-thyroid) but these really don't cause much difficulties in my day-to-day life. What really gets me is the headaches. I'll have many days in a row where I'm basically out of commission and bed-bound due to the pain, and the medications (although I'm incredibly grateful for them!) make me groggy and often nauseous. Many things set off a pain cycle: too much exercise like walking or lifting (I'll get back to that), too little sleep, or too much stress. It's interesting to note that all these health issues began after Ian's diagnosis. It's as though the emotional turmoil manifested itself in my body. Since I didn't have the leisure,the desire, or the mental robustness to "get rid of" or "fix" the primary problem (Ian's autism), all the stress, sorrow, and sheer exhaustion of living with and loving someone with a severe disability went straight to my immune and muscular/skeletal system. I did start having migraines when I was 29, but the big guns of my health problems started around 39-years old (I am now 55-years old.)
I won't go into the long drawn-out drama and trauma of trying to find a sympathetic doctor who didn't assume I was a narcotic-seeker or addict, but I did finally find a kind, understanding doctor who really listened, and life has been exponentially easier in that way. I have done many, many, MANY different things to deal with my pain, but nothing has yet taken the pain away for good. So I deal with it one day at a time. What has brought it to the fore lately is the birth of my darling granddaughter. Now that she is almost 7-months old, and weighs nearly 17 pounds, I have discovered that if I carry her for even a short amount of time, I get a headache. This discovery has been very hard on me emotionally. I mean, what Grandma doesn't want to carry her precious grandchild around on her hip? I AM able to cuddle her sitting down, but it restricts my ability to care for her when I'm alone so I can give my daughter and her husband a break. I love that little girl to pieces, and anything that interferes with that relationship seems simply unacceptable to me. Obviously, whining about it and wishing things were different does not help in the slightest, but I have my rebellious moments where I JUST WANT WHAT I WANT! And that's to NOT have this darn neck and this darn pain. It just sucks. So, I made an appointment with a doctor that does a procedure where he basically cauterizes the nerves that cause the pain, and I get a few months of relief (I have had this procedure before years ago, but have avoided it due to the painful recovery time.) Although the procedure is painful, I am going to do it because I'm tired of being in bed for two or three days after caring for my granddaughter.
This pain condition obviously interferes with my relationship with Ian as well. I like to visit him at least every other day, and if I'm flat on my back in bed groggy with medications, I can't do this. Lately I've also been doing Ian and his roommate's laundry due to washer and dryer problems at the apartment, and there are days when they have a back up of laundry, and/or I have clothes that I have washed at my house that need to be at their house. Luckily, Ian's primary caregiver has a lovely family that is willing to pick up and drop off laundry when I'm out of commission. The laundry problem will change when Ian moves as there will be two people with the boys at all times, which leaves one person to deal with the laundry, so that will be off my plate. I have visited with Ian during a headache "flare", and it ain't fun. He doesn't understand, and wants me to do and be what's usual, and if I just lay on his bed, or sit on the couch, that doesn't fly. All in all, it's not a good time for anyone.
As I write this, I am struggling with a massive headache, am in bed, and am pretty groggy (sorry if this post is disjointed), so it's obviously in the forefront of my mind. I have to say that my faith in God helps enormously. I KNOW that He has me in the palm of His hand, He loves me, He feels and understands my suffering, and He is always bringing help when I need it. I feel awful sometimes complaining when I know there are people with so much more pain and suffering in their lives, but I guess this is MY blog and I can cry if I want to (grin!) But I AM thankful for God's love and care, and the love and care of my loved ones. My husband is an absolute rock (especially since he is suffering with his own health issues), and my daughter and parents are always understanding. My dream is to be totally well, able to watch my granddaughter at the drop of a hat, and visit Ian whenever I want to. But THY will be done; not MY will. I know there is an important lesson to be learned in all this, which I can't think of at the moment as my mind is cream cheese. Perhaps I can wax more eloquently once the meds have worn off.
Blessings and Peace to all of you. I will catch you up once I am temporarily headache-free, and Ian has been moved. There are new roommates to meet and become friends with, and a new living arrangement to adjust to. Life is never boring.
I suffer from a chronic pain condition which waxes and wanes like the moon. Some days (even weeks at a time), the pain is very manageable, and I can live a more-or-less "normal" life. The source of my pain is primarily in my neck (I will spare you the medical details; suffice it to say, my neck is a mess), but it radiates into my head and causes severe headaches. Secondarily, I have a mild case of fibromyalgia, chronic fatigue syndrome, and Hashimoto's disease (basically low-thyroid) but these really don't cause much difficulties in my day-to-day life. What really gets me is the headaches. I'll have many days in a row where I'm basically out of commission and bed-bound due to the pain, and the medications (although I'm incredibly grateful for them!) make me groggy and often nauseous. Many things set off a pain cycle: too much exercise like walking or lifting (I'll get back to that), too little sleep, or too much stress. It's interesting to note that all these health issues began after Ian's diagnosis. It's as though the emotional turmoil manifested itself in my body. Since I didn't have the leisure,the desire, or the mental robustness to "get rid of" or "fix" the primary problem (Ian's autism), all the stress, sorrow, and sheer exhaustion of living with and loving someone with a severe disability went straight to my immune and muscular/skeletal system. I did start having migraines when I was 29, but the big guns of my health problems started around 39-years old (I am now 55-years old.)
I won't go into the long drawn-out drama and trauma of trying to find a sympathetic doctor who didn't assume I was a narcotic-seeker or addict, but I did finally find a kind, understanding doctor who really listened, and life has been exponentially easier in that way. I have done many, many, MANY different things to deal with my pain, but nothing has yet taken the pain away for good. So I deal with it one day at a time. What has brought it to the fore lately is the birth of my darling granddaughter. Now that she is almost 7-months old, and weighs nearly 17 pounds, I have discovered that if I carry her for even a short amount of time, I get a headache. This discovery has been very hard on me emotionally. I mean, what Grandma doesn't want to carry her precious grandchild around on her hip? I AM able to cuddle her sitting down, but it restricts my ability to care for her when I'm alone so I can give my daughter and her husband a break. I love that little girl to pieces, and anything that interferes with that relationship seems simply unacceptable to me. Obviously, whining about it and wishing things were different does not help in the slightest, but I have my rebellious moments where I JUST WANT WHAT I WANT! And that's to NOT have this darn neck and this darn pain. It just sucks. So, I made an appointment with a doctor that does a procedure where he basically cauterizes the nerves that cause the pain, and I get a few months of relief (I have had this procedure before years ago, but have avoided it due to the painful recovery time.) Although the procedure is painful, I am going to do it because I'm tired of being in bed for two or three days after caring for my granddaughter.
This pain condition obviously interferes with my relationship with Ian as well. I like to visit him at least every other day, and if I'm flat on my back in bed groggy with medications, I can't do this. Lately I've also been doing Ian and his roommate's laundry due to washer and dryer problems at the apartment, and there are days when they have a back up of laundry, and/or I have clothes that I have washed at my house that need to be at their house. Luckily, Ian's primary caregiver has a lovely family that is willing to pick up and drop off laundry when I'm out of commission. The laundry problem will change when Ian moves as there will be two people with the boys at all times, which leaves one person to deal with the laundry, so that will be off my plate. I have visited with Ian during a headache "flare", and it ain't fun. He doesn't understand, and wants me to do and be what's usual, and if I just lay on his bed, or sit on the couch, that doesn't fly. All in all, it's not a good time for anyone.
As I write this, I am struggling with a massive headache, am in bed, and am pretty groggy (sorry if this post is disjointed), so it's obviously in the forefront of my mind. I have to say that my faith in God helps enormously. I KNOW that He has me in the palm of His hand, He loves me, He feels and understands my suffering, and He is always bringing help when I need it. I feel awful sometimes complaining when I know there are people with so much more pain and suffering in their lives, but I guess this is MY blog and I can cry if I want to (grin!) But I AM thankful for God's love and care, and the love and care of my loved ones. My husband is an absolute rock (especially since he is suffering with his own health issues), and my daughter and parents are always understanding. My dream is to be totally well, able to watch my granddaughter at the drop of a hat, and visit Ian whenever I want to. But THY will be done; not MY will. I know there is an important lesson to be learned in all this, which I can't think of at the moment as my mind is cream cheese. Perhaps I can wax more eloquently once the meds have worn off.
Blessings and Peace to all of you. I will catch you up once I am temporarily headache-free, and Ian has been moved. There are new roommates to meet and become friends with, and a new living arrangement to adjust to. Life is never boring.
Sunday, January 3, 2016
Some introspective thoughts of a deep and somewhat morose nature---but with good stuff too, like LOVE
Well, it's a new year with the beginnings of all the usual changes and challenges, joys and opportunities. It's been a bit rough for me psychologically and physically, as I have been feeling a real anticlimax with the end of Christmas, and the blah weather. Gray, gloomy, and cold have never been my friends. Also, my chronic headaches have decided to ratchet up a few notches, and I have had several days of severe pain. I notice that when I carry around my granddaughter too much, I get headaches. This is a source of sadness to me as I LOVE to carry, hug and cuddle her. I guess I will have to hold her sitting down, and of course this seems like a simple solution, but the idea that it hurts me physically to carry her bums me out. Because of the pain, I had to take lots of Prednisone (along with my other pain meds), and that always makes me grouchy and weepy. And upon whom do I take out my grouchiness? Well, upon my long-suffering husband of course. And when I gripe at him, I feel guilty, and then I feel more grouchy, and then you have the vicious cycle. Sigh. Thank the good Lord, I am always aware that these feelings are fleeting (This Too Shall Pass), and I will feel better eventually. It's pretty crappy when I am in the middle of this muddle, but at least I am aware that it's temporary.
Lots of new stuff on the Ian front. He will be moving at the end of the month to a three-person apartment with two other young men with autistic-like behaviors. This means saying good-bye to his current roommate Ron, who I love to pieces. Fortunately, he will be living in the same apartment complex as Ian, so hopefully I will be able to see him from time to time. I do worry that this change will be hard on Ian. Although he is uncharacteristically good about changes (for a person with autism), there are usually some issues with any big ones. And this is a BIG one.
My heart strings were pulled the other day when a caregiver told me that when Ian is told that I am coming to visit, he will stand at his window looking out waiting for me. Sometimes it seems that he doesn't really seem to need me to visit him, but that's only because he expresses his feelings so much differently than "normals" do. My husband had to drop something off yesterday, and not having time to stay, wanted to do it without Ian knowing he was there. Unfortunately, Ian was in his room which faces the parking lot, and John saw him through his window. My husband quickly got back in the car, and asked the person who was driving to deliver the item he was dropping off, hoping that Ian had not seen him. Later on I called to see how Ian was doing and told them about the item outside the door, and the caregiver said "Oh, that must be why Ian was tapping on the window." I can tell you, I got tears in my eyes when I heard that. He had seen my husband, and was greeting him. How can these things not just tear your heart out?
In my more morose and pessimistic moments, I obsess over and worry about the time when John and I die--- that there will be no one to love our son as much as we do, which breaks my heart. When I am aware of these thought and feelings, I turn it over as quickly as possible to God with the assurance that He loves Ian even more completely than we ever could imagine. Somehow, I have the faith that it will work out, and that Ian will always have love in his life. In the meantime, we will love him with everything that is in us, and do the best we can for him while we are still here. Faith and Trust are such important and vital things for us on this journey with autism.
Love the people in your lives. It's so important. You don't have to "do" much; just be the loving presence that God wants you to be. Life is fleeting, and we are not assured of a tomorrow, so get on with the loving while you can. My favorite motto is "Life is a school, Love is the lesson." Amen and amen.
Lots of new stuff on the Ian front. He will be moving at the end of the month to a three-person apartment with two other young men with autistic-like behaviors. This means saying good-bye to his current roommate Ron, who I love to pieces. Fortunately, he will be living in the same apartment complex as Ian, so hopefully I will be able to see him from time to time. I do worry that this change will be hard on Ian. Although he is uncharacteristically good about changes (for a person with autism), there are usually some issues with any big ones. And this is a BIG one.
My heart strings were pulled the other day when a caregiver told me that when Ian is told that I am coming to visit, he will stand at his window looking out waiting for me. Sometimes it seems that he doesn't really seem to need me to visit him, but that's only because he expresses his feelings so much differently than "normals" do. My husband had to drop something off yesterday, and not having time to stay, wanted to do it without Ian knowing he was there. Unfortunately, Ian was in his room which faces the parking lot, and John saw him through his window. My husband quickly got back in the car, and asked the person who was driving to deliver the item he was dropping off, hoping that Ian had not seen him. Later on I called to see how Ian was doing and told them about the item outside the door, and the caregiver said "Oh, that must be why Ian was tapping on the window." I can tell you, I got tears in my eyes when I heard that. He had seen my husband, and was greeting him. How can these things not just tear your heart out?
In my more morose and pessimistic moments, I obsess over and worry about the time when John and I die--- that there will be no one to love our son as much as we do, which breaks my heart. When I am aware of these thought and feelings, I turn it over as quickly as possible to God with the assurance that He loves Ian even more completely than we ever could imagine. Somehow, I have the faith that it will work out, and that Ian will always have love in his life. In the meantime, we will love him with everything that is in us, and do the best we can for him while we are still here. Faith and Trust are such important and vital things for us on this journey with autism.
Love the people in your lives. It's so important. You don't have to "do" much; just be the loving presence that God wants you to be. Life is fleeting, and we are not assured of a tomorrow, so get on with the loving while you can. My favorite motto is "Life is a school, Love is the lesson." Amen and amen.
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