It’s been a tough past few days for the Murphy fam. What was intended to be a nice family out of town trip for a long weekend turned out to be quite an ordeal. I have had changes in my medications (for anxiety and depression) again because of nasty side effects and I’ve been struggling to hold myself in the road while continuing to function as a semi-’normal’ human being (how that comes so easily to most people, I will NEVER understand). Work stress has been building as the end of the school year is quickly approaching, state testing coming up, special functions, IEP time, decisions about where Ryan will go to school next year, etc. My before and after work job taking care of Ryan almost completely single-handedly and everything else regarding home (except for the yard work, pretty much) while not allowing the decrease in my meds to totally through me off kilter has been getting to me. I thought I was doing reasonably well. This past week I have been virtually unable to sleep more than about 2-4 hours at a time and I began to notice that little things were making me madder than they should (a tell-tale sign that my meds aren’t right). My appetite has returned with a vengeance (the meds are known to act as appetite suppressants as well, but LIKED that side effect! lol) and I’ve put on about 5 pounds which has me fearing that I will put back on the 50 pounds I’ve kept off for the past almost two years. Acknowledging that my stress level has been pretty high, I tried to lower my expectations on myself and do what absolutely had to be done by deadlines, etc. and remove some of the other pressures from my calendar until later (first time in 26 years of filing income taxes that I requested an extension of time to file).
I had a hard time deciding whether or not all 5 of us should make our annual weekend trip to Barber Motorsports Park in Birmingham, AL (about a 5 hour drive away from home for us), but it’s one of our favorite cities to visit and we’ve always had a wonderful time there. Our good friend, Josh Hayes (www.joshhayesracing.com) was racing there this weekend and we love to go and cheer him on. It’s also one of Mark’s (husband) favorite places to ride his mountain bike (Oak Mountain State Park) and he works so hard, has been on vacation this week working on the house and his birthday is coming up, so I really wanted him to have a chance to enjoy this weekend trip which had been planned for a long time. I thought long and hard about Ryan and I staying home since I have been feeling extra exhausted and stressed, I decided to go on and go, hoping that getting out of town, eating out, etc. would do me some good as well as give us some nice family time together. As much as I love my sainted husband, he is NOT a communicator, so I got ZERO input from him on the decision and at the last minute (literally) I had him throw some things in a bag for Ryan and I, pick us up at school and off we went. Nothing major went wrong, but I just couldn’t shake the funk that had me firmly in it’s grips. All the little things seemed to be building up inside and making me more and more anxious, sad and upset. Ryan and I had a whole day and a half to ourselves while Mark rode his mtn. bike and he and the girls went to the races (I’ll admit, with me feeling conflicted: on one hand, a little resentful that I was missing the racing fun, but on the otherhand, Ryan and I were doing what we enjoyed,.,visiting the bookstores, eating out, etc. watching movies in the room, etc). Ryan went swimming and we explored the area a little bit (I tried to talk Ryan into going to the zoo or a local botanical garden, but he didn’t want to). We ended up visiting a beautiful new Barnes and Noble bookstore with stunning views overlooking the valley near Cahaba Heights, Riverview, Hoover, and the lovely hills of north Alabama. Mark and the girls went to the race track and we met up for supper. Things went downhill from there. Miscommunications, frustrations, confusion on the plans, combined with the stress of Ryan refusing to go to the races (he doesn’t like loud things and it’s pretty boring for him and he doesn’t like the long walks, etc. but sometimes we can compromise with earplugs and promises of burgers and dvd’s) and his insessient demands to go to the bookstore (even after we already went once)to buy dvd’s or music cd’s, or back to the hotel to swim, or generally whatever strikes him at the moment. He has no patience or understanding that sometimes the family wants to do other things or how to wait and it becomes a major power struggle and a huge source of family strife for all of us. Usually I just blow off any plans that I know he won’t enjoy/cooperate easily with and he and I go our way (which always leads to the bookstore and a “chocolate drink” as he calls Starbucks Frappuccinos!) Especially over the past couple of years I have tried to think of it as my purpose in life to take care of him, to teach him and to enable my husband and daughters to live their lives doing what they want to do as much as possible while I try to shoulder the majority of what’s necessary to entertaining Ryan and take care of his needs (decisions, haircuts, doctors’ appointments, IEP’s, etc.), even if it means that I miss out on things I would enjoy (like seeing Josh race). It’s always a balancing act for me, weighing the amount of difficulty it would take to make Ryan go along with a “plan” or if it would be less stressful on me and everyone else in the family if I just stay home with him or take him to the library or bookstore or park, etc. where he is happiest. I’m sure that strategy is not perfect and is now becoming the source of some of our problems, but it has worked as a coping mechanism for me for a good while now, relieving me of some of the social pressures that I feel out in public, parties, hockey games, etc. He had been going to play at his Grandmother’s home every Sunday, but I think he is growing out of that because now he usually doesn’t want to go over there anymore. She still does the same things with him that she has done since he was a toddler…blowing bubbles, taking him to the park, library for books/movies, playing catch with a beach ball in the backyard…pretty boring stuff for a 14 year old). That was pretty much the only time anyone else “babysat” him for me. Mark works late and is in the habit of taking almost every Sunday to go ride his mountain bike, sometimes a Saturday golf game or yard work. He will take Ryan to the library occassionally on Saturdays which gives me 30 minutes to an hour to myself. The girls have quit watching him very much and I don’t ask them to, because at 17 and 20, they are blossoming into their own lives and I don’t want them to strapped down watching their brother too much. The down side, obviously, is that when there is something that I would like to do, it makes it almost impossible since he makes it quite difficult to have an adult conversation without beintg interrupted and I’m constantly feeling the pressure of all eyes on us whenever we are in public and holding my breath and watching everything I say and he says and does to make sure we act “normal” or “acceptable” in public. I try to keep him busy and out in public (but mostly in places I feel safe and comfortable, such as Barnes and Noble, where the staff has come to know him and is very patient and kind to us) in an effort to constantly teach him good social skills and independence, such as ordering his own food in restaurants, paying for his purchases, etc. I stand back and act as his interpreter when folks have a hard time understanding his speech or his “code words” (like “chocolate drink” for frappuccino) and helping him with the money, etc. Another draw back to this approach is, hard as I try not to feel this way, sometimes (usually when my medication is lowered or if I miss a day or two) I feel resentful that I have no life outside of work and Ryan. A lot of that mindset was my choice, however. I found it more stressful to try to maintain friendships with folks who’s kids are now grown and when they invited me to do things, like go to a movie, I’d have to say no because Ryan wouldn’t sit thru it (unless it was Disney or something) and the issue of finding a “babysitter” was impossible. It was more painful for me to know of all the plans the “other friends” would make and even though I was invited, I knew that I couldn’t participate because of Ryan. Please undertand (as I know you other caregivers do) that I love Ryan and my family more than my life itself, but I’m human, too. Unfortunately, I’m also red-headed and when “my cup runneth over” it usually comes out in a steamy outburst rather than a slow trickle. Think volcanoes: Vesuvius versus Kilauea (Vesu just blew a big part of Italy literally to hell one day and Kila oozes almost constantly and is much more calm and predictable…and easier for folks to see coming and get out of the way!)
So, after a bit of a meltdown on my part in Birmingham and Ryan being a little more difficult than usual (or maybe the rest of the family seeing that I was having a hard time and them kind of overreacting to the fact that Ryan was not making things any easier for me) I decided that since we had two vehicles up there, Ryan and I would just leave one day early and drive home by ourselves. No big deal at all as far as the road trip was concerned. Everyone who knows me knows that driving 5 hours on a whim is like going to the mall for most people. So, after venting some of my frustrations with Mark and the girls being upset because they felt Ryan was making me not have fun and leave early we said a teary good bye and Ryan and I hit the road. After I settled down (and stopped thinking it might be better if somehow my car just careened off a cliff…no worries…I would never actually do anything like that, especially not with my littlest angel with me.) it was smooth sailing all the way home (although I did have to work hard to shut out 5 hours of one School House Rock CD playing over and over again the entire way…oh yeah, and he did throw my favorite sleeping pillow out of the car when we stopped for gas which, of course, I didn’t discover until we were another hour down the road…oh yeah, and he did drop his whole glass of tea in the Dairy Queen at the same gas stop…and I saw him try to slip a toy he wanted into his pocket and got that away from him before he actually tried to exit the building…that qualifies as a smooth trip, doesn’t it?) We were home in time for supper. Easy evening (ony one other tea spill), good to sleep in my own bed (once I could finally get him to go to sleep), easy morning. No problems. Just planned to have an easy Sunday doing laundry and watching tv…no major stressful requirements, hoping to regroup enough to report back to work on Monday morning somewhat ready to face another week.
So, finally (I know, I’m long-winded)…let’s get to the teachable moment. Of course, as he does every single day of our lives, he was asking repeatedly to go to the bookstore (aka Barnes and Noble). His favorite thing (which we do at least a couple of times a week and once almost every weekend) is to go there and look at the DVD’s and CD’s (of which he has a very extensive collection and has them all memorized), buy one of those and a “chocolate drink” sometimes pausing to play in the children’s department and then he happily moves right on along to his usual habit of asking for hamburger and french fries or to go to his favoriate restaurant next door (O’Charley’s). We go there so often (both places, actually) that the staff knows him by name and they go out of their way to interact with him, help him make his selections and checkout mostly without me, like I mentioned before. I use these outings as sort of a way to work on his burdgeoning indepence and social skills in a rather safe and welcoming environment. After not finding what I wanted to read last night at home (coincidentally, something about how parents and families of special needs kids cope with the stresses…I did read “Road Map to Holland” by Jennifer Graf Gronenberg last night and although I found it interesting, it was geared mostly to parents of much younger kids.) I gave in and said we’d go to the bookstore. I figured since Ryan had taken his bath all by himself (another skill I have been trying to help him learn to do alone or with minimal help…he is 14, after all) and he had gotten all dressed all by himself, I should let him be my motivation for me to get up and get a shower and not be a lazy slug all day. So we drove out to Barnes and Noble and we did all his usual routine stuff there, even though I really would rather have stayed in bed all day feeling sorry for myself and depressed. Feeling a little anxious at just getting out when i was feeling quite bad (emotionally), I took an anti-anxiety pill just to try to simmer me down enough to relax and enjoy the bookstore (also my favorite place to visit and relax). Good thing I did. As he sipped on his frap and me on my coffee, we proceeded back to the children’s section. He went to play with the train set at one end while I perused the Special Needs and Parenting sections just on the outside shelf that makes the half-wall of the children’s section. I could hear Ryan saying “hi” and talking and some little girls chatting with each other and playing only one row of books over from me, yet I was hidden from their view as they were sitting on the floor (besides, I’m so short, only Michael Jordan could have seen me on the other side of the shelf.) I thought I heard the word “freak” and then a lot of giggles. My ears perked up and I peeked over the shelf on tippy toes. That’s when I heard and observed one of the girls tell Ryan, “Go away! You’re a freak!” and she said it two or three times by the time I could get around the shelf and over there. At first I just told Ryan to come on and let’s go play someplace else that these girls didn’t want to play. He then sat down in a chair and said, “I’m just gonna take a rest.” The chair wasn’t even facing the girls and he was 5 feet away from them. I stepped away again, not wanting to make a huge scene, but I stayed within earshot and the same girl told him again, “You need to just go away and play someplace else. You’re freaky. You’re a freak.” I came unglued inside and began to shake. More calmly than I would have ever thought possible, I went back and confronted the one kid specifically (the other two girls were sisters who just happened to be there, not with the mean girl and they fled to their mom who was nearby). I told her how mean that was to say something so hurtful, etc. and I asked her where her parents were. she wouldn’t say. I told her I wanted to talk to whoever she was there with and she refused to go get them, to tell me their names so I could have them paged, etc. She wouldn’t tell the lady who worked there anything (she also overheard what happened and was right behind me when I confronted the kid). I asked the employee to go page her parents so I could talk to them and I gave kid a good talking to about how being different is not being a “freak” and about being mean to others, etc. and I positioned myself at the entrance to the kids section so she figured out that she was in trouble and I told her I was not leaving until I talked to her mom. She finally gave us her first name, but she said she didn’tknow her mom’s name (yeah, right). The employees tried to spot a mom, but they said they couldn’t announce the kid’s name, which is understandable and they couldn’t really follow her around, but they did keep an eye on her and one of the employees (the lady who worked in the kids’ section who heard what happened) positioned herself at the front door. I finally went around asking people in the store if they were there with a child and I found the mom working on her laptop in the cafe. I told her what happened and she was appalled. Anyway, to end this long story, the mom basically wanted to yank the kid out of there and beat her butt, but I suggested that maybe if we let Ryan introduce himself to the girl and explained things to her, maybe she would see things in a different light and this could become a positive learning experience for all of us instead of a horrid nightmare. So, she got her kid and we sat together in the cafe and I explained a little bit about Downs and how Ryan is different but also how he is the same. We talked about favorite things to do (like both of them love going to Barnes and Noble and both like eating Mac and Cheese in restaurants, etc.) and she really seemed to be a troubled child, to me. The mom said to me (before the kid came over) that she had been called names at school and that she was probably projecting, which was enlightening, but I suggested that maybe they needed to make sure that they were addressing the fact that she was being bullied at school, etc. and make sure she was getting help to learn proper coping skills. I told the child that I am a teacher and that she should find a teacher at school that she likes and tell them about whoever is bullying her and that the teacher will help her because teachers really do love their students, etc. In the end, I gave her a coupon and $5 for a drink from the cafe (so she could try Ryan’s favorite drink) and her mom told her she couldn’t accept it because she was the one that had done something wrong. I suggested that I really wanted her to understand that people who are “different” are nice, too, so I told her that after she and her mom had talked about all this, maybe she could think of something nice she could do for something else with that $5. I told her that I would be thinking of her and that I had confidence that she had a good heart and that she could change and become an extra-nice person instead of being mean and that I bet that other kids and people would start being extra-nice to her, too.
I don’t know where all of this came from, but that’s how it came out, so I pray it was the right way to handle the situation. We left the poor mother in tears and the girl seemed mostly in fear of just getting in trouble from her mom, but at least she listened to me, even thought she didn’t say much and didn’t have very good manners or tone when she did speak. The only other time anything like this ever happened to us, I just picked Ryan up and ran out of a McDonad’s play place many years ago and everytime I see a McD’s play place it gives me the creeps, so I didn’t want our favorite hangout to be ruined by what happened. Ryan didn’t seem to have his feelings hurt; he just knew that something bad had happened because I was upset and the other mother was upset and he kept saying he was sorry. The mom of the other two little girls that were present works in mental health so she came over and told Ryan he did nothing wrong and talked to him about lunch and how much fun it is to come to the bookstore, etc. so that helped a lot. She was appalled, too. Her girls had run to her and told their mom that his girl had been throwing teddy bears at them and they had already moved away from her once, but she followed them and persisted in engaging them before saying all that to Ryan. So, I guess what I need to take away from this experience is that even kids that “look” normal can have problems, too and like I have told myself on many different occassions: There are lots of things worse than Down syndrome and I thank God once again for my beautiful boy who has an angel’s heart and can put a smile on even the most hardened face. Another memorable day in the life of Ryan Murphy. (Still looking for good reading material on coping skills for parents of special needs children, btw, so please leave any suggestions you might have in the comments section!)
p.s.: We went home from all this ordeal to find our dog of 14 years staggering around and she died a few hours later last night. So, today’s topic of research for me is how to explain THAT to a kid with Downs who doesn’t have any concept of death.
…boy, am I tired. 
