Pain stuff and difficult caregiver stuff

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!

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.