We attended Devin’s senior class awards ceremony this morning followed by the senior luncheon. Lots of reminicing, hugs, tears. Lots of pride in our beautiful daughter, not for gettting the most scholarships or the highest awards or any of the accomplishments she did or could have received, but for being the wonderful, beautiful young lady she has become. Today really made me miss being a part of the school family and being a teacher and having that feeling of pride in every student that I contributed to where they are today. Don’t know how I will ever adjust to not teaching. Doesn’t seem possible today. The idea of not teaching makes me feel identity-less. Who am I if I’m not a teacher? With the kids getting older and going more and more out on their own, I feel less and less needed. I guess this is the beginning of empty nest syndrome. But ah, Devin, sweet Devin, she has done such a wonderful job of being a good student, a great person and a terrific and beautiful daughter inside and out. Upward and onward, my angel!
What now?
Good news! My claim for disability retirement has been approved! Bad news. Now what? I have always worked, so I don’t really know how to frame my life without the context of work of some sort. I enjoy (for the most part) teaching the online classes as they don’t require too much work, less stressful than brick-and-mortar teaching and they provided me with a sense that I am still working and therefore, contributing to society, my family’s income and if working, not worthless. I will not be able to continue teaching online in order to receive retirement benefits. I can’t really picture my life without working. I get bored easily and when boredom creeps in, so does depression and then follows anxiety. What will I do all day? How will my days go by if I don’t have work to focus on? Will I be able to find something else to occupy my time (writing and trying to get maybe a magazine article published? working on the book about George Ohr? Making pottery to sell? Something else that I have not even thought of yet?) and to give me some purpose besides laundry, cooking supper and keeping the house manageable. All of these questions frighten me a little bit, I’ll admit but I’m talking about them and my fears/worries with my husband and my therapist and I am going to choose to “trust the process” and hope that with time these things will work themselves out. It’s very painful right now, though, to have to quit a job I really like (another one) and step off into the great unknown of “retirement” at age 47.
On a good note, 24 days until we leave for our trip to Europe! I’m excited and I can feel the creeping approach of “trip anxiety”, that feeling I get whenever about to or embarking upon a trip. Have I planned everything well enough to prevent a disaster of missing a plane/train/bus? Do I know enough about where we are going to get us from point A to point B and survive (much less enjoy) the trip? Will all 5 of us be able to get along in Europe for 15 days? I sure hope so.
Just what’s on my mind today…
It’s been a long time (since I rock and rolled)
With writing being so theraputic for me, you’d think I would have been here writing my heart out since my last posts. A lot has happened. Summer was so-so, didn’t feel ready to go back to school in the fall. By mid-September my anxiety and depression was a steam roller rolling right over me (don’t know why I’m quoting all these songs today). I went out on medical leave being totally and completely overwhelmed by September 19 and immediately began seeing my psychiatrist and therapist again sometimes 2-3 times each week, major medication overhaul and all that goes with that. This has been the worst and longest lasting “meltdown” I’ve ever had and we figured out a great big pattern that led to a diagnosis of Bipolar Disorder II. Very scary, but not the “really bad kind of bipolar disorder”, but a more muted (not so manic highs, just big spurts of frenzied activity, high productivity, etc.) then crushing lows. It was decided that I should apply for disability benefits and take disability leave which I did until January 12, 2009, when I resigned and began a new life as a stay at home person. For months I could do little more than stay at home, sometimes not even leaving my bedroom. Gradually, once the stress of returning to work looming over my head was removed, I began to improve in my mood and motivation and engery, etc. Continuing all this time in adding and changing meds and tweaking dosages, I finally got on a relatively stable plateau in the early Spring ,however by April, it appears as if I am either experiencing another low in the bipolar cycle or the meds aren’t yet right or perimenopause is conspiring to kill me or its all side effects of the medication or….who knows. Some days I’m able to go out to a store for groceries or to Barnes and Noble, but some days, yay even weeks, I can’t leave the house without the anxiety taking over and driving me back into the dark bedroom under heavy medication. Some days I just wonder what my purpose is in life. Why am I even fighting this fight, struggling this struggle, but those days mercifully don’t last long these days (days, instead of weeks or months in a row) and within a few days I can find some reason to get out of bed and do something be it laundry, gardening, just fixing up the tea and coffee pots can be my big accomplishment some days. I remember the days some summers when I would go off of all medications and feel relatively “happy” (whatever happy really means) and I think, ditch it all…if all these meds don’t make me feel any better than this, why take anything at all and suffer all these side effects. Then I fear how bad i might feel if the meds really are helping that much and I were to quit them, so I keep on taking my handfuls of pills morning and night and some days trudging myself to therapy. I feel that I’ve forgotten how to have “fun” just for fun’s sake. That sucks. Nothing excites me. My computer is my only friend, my books having abandoned me due to a gnat-sized attention and concentration span. But on the other hand, I can reason with myself and say that life is good, we are surviving without me working full-time. I’m productive to some extent with teaching my online classes and keeping up pretty well with housework (not cleaning, mind you, just “straightening up”), etc. I look back on the days when I was an accomplished multi-tasker and driving force in the universe and wonder where I ever got any of that energy and drive. I wonder if that girl is gone forever or just on sabbatical. Either way, this is me now and I’m trying to get used to my new life and find some balance and contentment with my lowered responsibilities.
Turning heartbreak into a teachable moment…and, the dog died :(
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. 
So much for coping
Well (hehe…I just had to say it), my great plan for coping didn’t work. Everything that could go wrong did and every little thing drove me nuts. I cancelled the two after school appointment I had (both fun things…getting my nails done and then meeting a few teachers at a coffee shop) and ditched out and went straight home to the Xanax and my bed and watched videos until Ryan came home from his Grandma’s house. The big thing that happened today that pushed me over the edge was an unexpected meeting today in my library for another student’s IEP meeting (for you lay people, that’s an Individualized Education Plan, and it is what drives every special ed student’s daily life at school, or should, anyway). This was a “big one” meaning that it was more than just the parent and the sp. ed. teacher saying here’s what we’re gonna do next year, etc. and signing a bunch of papers. There were parents, grandparents, lawyers, advocates for the family, teachers, special ed directors for the school district , administrators all in my library. I’ve been thru that kind of thing many times both for Ryan and as an advocate for other families who need help. What got to me was that I have been trying to figure out what to do about where Ryan will go to school next year, 8th grade, and I wasn’t happy with the options for him in our home school district nor with the one where I teach. Today I had the chance to talk to the director of special ed for our district and it was very nerve wracking for me to have to go into detail about what I “think” Ryan needs and what the problems that I see in the existing program, etc. The good news is that I did find out about some changes that are planned for next year at our school that I think will be for the better and there is now a plan for me to meet with the district sp. ed. person and go over the entire sp. ed. curriculum for the class Ryan will be in next year in order to create a plan for him. This will be in addition to our IEP meeting which has yet to be scheduled. Yes, I’m a teacher, yes, I’m an advocate and yes, I’m Ryan’s mom. But does that mean I *know* what is best in the classroom for him? Not necessarily. I’m not a special ed teacher. I’m not even the kind of person who could handle being in a classroom with ten special ed kids with varying degrees of needs and abilities all day everyday Monday thru Friday without cracking up. I always tell people that sometimes you learn what *to* do by seeing what *not to do* so I guess this is one of those situations. I think today God opened a window (the possibility of change in the program at my school for next year and these new admin. connections) after having closed a door (Ryan having to move up next year, his old teacher retiring, etc.). The clincher on today was getting Ryan’s school yearbook out of his bookbag this evening. His picture was left out even though we paid for and received school pictures back in the fall. On one page his name is listed as “not pictured” and even in the candid shots throughout the book, there is one picture that shows 3 of Ryan’s classmates on field day. There are no pictures of Special Olympics competitons in the sports or extra-curricular activities sections. No candid shots of them at P.E. or in the lunch room or anything. If it weren’t for his name listed on the “not pictured” page you would never know he even went to school there. That kind of thing hurts more than anyone can imagine. This is what we get and you are beginning to see the fight we have to go through every day just to have a place to take him to school that will keep him safe and, if we get lucky, or make enough noise, teach him something along the way. On the bright side, this morning when I drove Ryan over to his school, no one came out to get him from the car drop off line because both of his teachers were absent (which I didn’t know at the time) and the one sub couldn’t manage the class and get kids from the drop off. Of course, the teachers who should have been on duty out there were no where to be seen, so in an effort to take this huge step and encourage Ryan’s independence I asked him if he could walk to his classroom alone. I can see the route all the way to his classroom door from my car. I let him go and immediately he takes the alternate path and I lose site of him. Panic. I try to be reasonable and wait. Give him enough time to walk the route and take the turn that will bring him back into my line of vision. Other cars come up behind me, I think I see him enter the classroom door, but I’m not sure. I call his teacher’s cell phone to confirm that he’s in the classroom and that’s when I learn that she is not there. I throw the car in park and take off at almost a run for the classroom. When they open the door, there is my angel, putting away his bookbag just as calm as can be. Thank you, Lord. Thank you. Tomorrow is another day.
Stress anyone?
Well, (I’m seeing a trend in my writing style here…everytime I begin a post, I am inclined to begin with “Well, …” Note to self: Stop with the “Well” business!)…anyway…
Today, boys and girls, I think the topic is stress. I have no other explanation at the moment for why I feel the need to cry and/or run screaming from the building today. It’s early in the day, nothing special going on at school like state testing or anything else that should cause undue stress, no crises at home, no one’s sick, no pressing social engagements for me to obsess over in advance (that’s a subject for another day, social anxiety). Anyone else ever have these days? (…and no, all you guys out there, it’s NOT PMS!…lol) Everything seems to be ticking me off today or getting under my skin. One of my assistant principals is a very positive, upbeat guy. He provided me with a nice prayer that he says everyday before he starts for work. If anyone wants a copy, I’ll share. Just leave me a comment and your email addy and I’ll zap it to you! 
In days past, I WOULD run out the door, grabbing for the bottle of Xanax and head home, shut myself up in my room with all the curtains drawn, dark as possible and climb into bed and withdraw from the world. In an effort to do better than that these days here’s my alternative plan and some of my coping mechanisms for days like today: I’ve turned off the bright flourescent lights in my office and turned on only my computer monitor, a desk lamp and have a nice scented candle burning. Hope it works.
Ch…Ch..Ch..Changes
Sarah (sohrmurphy) & Ryan (age 14, DS)These pics were taken on Feb. 29, 2008, when my (and my daughter/Ryan’s 2nd sister, Devin, 17/jr.) school (St. Martin High School) hosted the area Special Olympics Basketball Skills competition. …Ah, changes…
I might as well go on and accept it. The little kid stage is over. I had an extra year and a half pretending to myself that Ryan is still “little” even though he turned 13 in November 2006. Now the more I learn about what Ryan should be doing next year in 8th grade, the more I realize that I need to accept that his adult (or at least young adult) stage has begun without me, so I might as well catch up. With all the stuff I’m reading online about what other kids (see? there I go again!)…young adults with Downs around Ryan’s age (14-1/2) are doing and what stages come next, I found myself feeling a little down (no pun intended) over the past couple of days. It could be the stage of the moon, or as my sister says, all the negative ions floating around in the air (lol), or the fact that there are now 8 straight weeks with no holidays until the end of school, or maybe that I’m finally coming to the realization that the time is here for me to change MY ways and start treating Ryan more like an adult and less like a child. He’s capaple and from time to time in years past we have been through these “spurts”…it’s not really a growing spurt for Ryan. It’s more of a spurt in my mind or maybe a maturity spurt for Ryan coupled together with my delayed acceptance that it’s time to get going on this next stage. For the past many months, I have made a conscious effort to just forge ahead, just Ryan and I most of the time, and stop thinking in terms of “I need a babysitter so I can do …{insert limited activity here}.” Because Ryan enjoys going to Barnes and Noble (B&N) so much (my favorite thing to do), that kind of started it. I decided instead of coming straight home after school and being bored and lonely with it being just Ryan and I most of the time for 5 or 6 hours until everyone else starts coming home in the evenings, we started going places after school. Of course, since my social anxiety limits me to the things that I enjoy and am willing to try to do, we started going to B&N at least twice, sometimes more often, a week even if just for a quick visit and a “chocolate drink” (as Ryan calls my favorite frappuccino). I’ve worked really hard to give him a little independence at B&N. Since the staff is getting to know us pretty well, I’ve let him go on to the music and dvd department while I wait in line in the cafe. I can see the front door from there so I know he can’t escape. A few times he has left that dept. and I’ve panicked, but I’ve usually found him in the bathroom (yes, I’ve had to go in the men’s room more than once to help him and that’s pretty unnerving. I’ve tried to teach him to checkout by himself with me standing back giving as little help as possible. He still doesn’t have good money skills, so I usually let him use gift cards, but he can tell the clerk our phone number to get our member discount. He likes to visit the libraries, but I spend all day in a library, so I try to hold him off of those visits until the weekend when his Dad has been taking him for the past several Saturdays. I’ve stopped worry and waiting for someone else to be begged into going to Wal Mart for me and Ryan and I have been going after school by ourselves and just doing what we can. If we can’t get everything we need in one trip or if he is too tired to walk that much or if he’s not cooperating or if I’m stressing out, we just leave. I’m trying to run more errands and just do what we need to do taking Ryan with me and figuring out ways to cope and trying not to stress over the difficulties and his behavior (I’ll go into all that another day) rather than having the mindset that I can’t do lots of things unless I am able to leave Ryan at home like he is still a little kid. I’m trying to think of him as my purpose in life now rather than having the mindset that I must be a career woman, housekeeper, laundress, cook, friend, etc. I’ve given up all friends outside of school and much to my embarrassment and chagrin, I don’t even talk to my best friends on the phone anymore. In my mind, I couldn’t keep up with all the demands and having friends who invited me to do things that on one hand I enjoyed and wanted to do, but on the other hand those invitations caused me stress and anxiety and then depression because I felt so different from them. I had no one to care for Ryan while I did things with them, even if it was something as simple as see a movie or go shopping. Ryan doesn’t like to do those things and it was more of a stressor for me to try to struggle with him and I was always afraid of what he would say or do and how others would react to him. My strategy for quite a while (not intentional, but after a while I picked up on my own pattern.) was to accept social invitations and promise to be somewhere and then some excuse would arise and I would cancel at the last minute. I could not face saying no. After my mother died, I think I used my grief as an excuse to withdraw even further from the rest of the world. At some point, that’s when I decided that I might as well accept the fact that for the rest of my life it will probably be just Ryan and me most of the time. Mark and the girls are working, doing things and have their own lives. It is my life to care for Ryan. I stopped fighting that and I am trying to come to terms with how I can best care for him and ensure his happiness while trying to find things that I will also get some happiness and satisfaction from that he and I can do together. I’m not even sure that those of you who do not have a child with a disability will even understand what I am saying here and as of tonight, I can’t explain it any better. Maybe another day.
Jumping the Gun – Transition
Today I want to take a break from the background story of Ryan’s early years and share with you what’s going on in our lives right now. Ryan turned 14 last Nov. 2007 so all the experts and laws say that it is time to begin to think about and plan for his life after school. This is called transition from school to work and since he will be moving up from middle school to high school (8th grade which is still jr. high in some districts, but where I work grades 8-12 are high school) it’s time for us to begin another learning about something new all over again. It seems that this happens every year, to some extent, in that in the spring we always think about where he will be next year in school (he went to grades K-6 in our home district (Biloxi Schools), but I brought him to St. Martin (Jackson County Schools) to be closer to me this year and so he could be in a better middle school program, which has been great. (Yes, I’m an English teacher, too, but I LIKE run-on sentences!) This will be really the biggest change/transition that he has had since he entered into kindergarten all those years ago. We had big meetings and big plans with lots of experts about what would be best for him (it was called Person Centered Planning) and we looked forward all the way to what we envisioned him doing after finishing school. At that time, as best I recall, we said we wanted him to be happy first (of course), we wanted for him to have learned to his highest potential in school, we wanted him to have a job when he was ready for that, that we wanted to leave the door open for options after school for Ryan to choose, i.e. continued education, his choice for living arrangements (i.e. assisted living, living at home, etc.). I don’t see that any of those goals have changed from when he was 5 years old. That makes me feel pretty good about how much we had learned in those first 5 years and I feel like we have been on the right track. I also feel that this is a critical time in his life because as a jr. high/high school teacher I see so many kids who either take one fork in the road or the other at this stage of the game. By that, I mean teenagers seem to leave 8th grade headed out toward graduation as serious students with a post-high school goal in mind (work, college, vocational training, etc.) or they have not had much success at school and they choose the other fork, which is to basically give up on school and just go thru the motions of showing up because they have to (the ones that stay out of jail, that is) and they just slide on out the door to no-where land (I’m talking about ALL students here, not just the special ed ones). The students give up, lots of the teachers give up on them, the parents give up and from that point on, they are pretty much on their own. That’s sad, to me. I don’t give up on teenagers. They need just as much TLC as they did in those critical early years, maybe even more (certainly more specialized…anyone with a good heart and some income or support can pretty much take care of the physical needs of a child, but the older they get, the smarter (academically and emotionally) the “carers” (parents, teachers, etc.) have to be to help them stay in the game and be successful. Add to that the twist of Down syndrome and I really think this crossroad is very important. Either he just slides along into a high school program that just exists and does the minimum required and fudges on the rest to make it look good on paper and the students’ learning comes to a screeching halt (academic, social and life skills) and they’ll just hang around until they are 21 and the law kicks them out of school OR someone (that would be me) fights to take the other fork, to find out what will be best for him, who can make it happen, what strategies and resources will it take, who will take on my challenge and help us along this difficult road to keep him learning, to teach him new skills that will enable him to have a better ability to function on his own or at least “more on his own” than being totally dependent upon others as he has been so far in life. (Notice the emphasis on ability as opposed to disability?) The reality that we may not always be around for his entire life to care for him has never been more clear than at this junction. His sisters are entitled to have their own just-now blossoming lives, now and in the future. I wouldn’t mind having a little more freedom from time to time in my dotage and he would be so bored (an inevitably depressed, I’m afraid) if he has only the skills to sit around, watch tv, videos and be totally dependent on others for meals, clothing, to take him for outings occassionally at their whim or ability. I don’t think that kind of life will be what will make Ryan happy. He’s funny, vibrant, energetic, has an unbelievable memory, loves music, dancing, performing, swimming, going places, cheering people up, helping others, making people laugh…so much potential…so much to share…so much more to learn…so much more to give/teach others who interact with him on a daily basis. I see him working in a music & video store, library, bookstore…he knows every song on every CD and which number cut it is on the CD and which episode of which show in which it is sung. He can check out books to my students when he plays at my library at school. He has great manners and people skills (most of the time..he’s a boy, ok?). Who knows what skills, strengths and abilities he will develop between now and age 21 or what his likes and dislikes will be by then? He never ceases to amaze and I have no doubt that he will amaze us again, I pray ’tis so. But we’ll never know if we don’t work hard and give him all the opportunities to learn and flourish that we can. We’ll never know how high he could have soared if we don’t try or if we have no expectations at all. HE CAN HAVE A GOOD LIFE BUT HE STILL NEEDS TO LEARN MORE!!!!!!!!! I could never give up and take the easy road. Tired and crazy as I am most days, I have to pull myself up by the boot straps and dig in for another fight for Ryan. Schools, teachers, etc. (remember, I AM a TEACHER and both of my beloved sisters are teachers, the most noble profession in the world besides being a mother, by my way of thinking) don’t always have the same motivation as we do to come up swinging everyday and do the difficult work that MUST be done in order for all of our dreams for Ryan to become reality. Meaning well, they do their jobs, but those that go that extra mile are too few and far between. The trick becomes finding those energetic, determined, open-minded “Super-Teachers” who CAN do this job and help Ryan blow all the low expectation people out of the water. Those teachers or programs that just rock along, going thru the motions will not cut the mustard. I won’t settle for whatever our district (we’re lucky, at least we have 2 options since I work in a different district and that gives us the option of having him attend school in my district.) offers because it is easy and no one has sued them (yet;). Most folks only have 1 option, their local district depending upon where they live and they can fight that battle there, do the best they can or usually the other alternative suggested by the schools and other professionals is a more restrictive, less inclusive, more institutional and a horid option for children like Ryan. Again, something that I have NEVER considered an option and I swear to my dying day that I will NEVER consider. Ryan is a young man first and he deserves what every other young man has…the right to be educated and live amongst his peers not just to be housed someplace, fed, clothed and entertained occassionally. He happens to have developmental disabilities second, which means that he will need some modifications, some assistance to live his life, not the opposite. We won’t take that easy fork in the road and just turn him over to someone else after he is finished with school and settle for whatever “they” (whoever “they” may be) can offer him on a day to day basis. That would be writing him off, in my opinion. Who of us doesn’t have our weaknesses, our faults, our “disabilities”? What if our families just gave up on us because raising us was hard work (I know that this happens oh, so often, God save and bless their little souls)? It’s not right. It’s not us. We will fight, find the right school or make ours (one of them, at least) work harder, push themselves to look outside of the box to do new things, maybe more difficult things, to make sure that Ryan gets all he can get out of his last years of school. You probably expect to hear this kind of talk from someone with a child who is turning 18 or is anticipating that 21st birthday when special ed students are politely ushered out the door of the school usually into oblivion. As I told you in an earlier post, I’m the worrier, the planner. I have to be 5 steps ahead of the pack or I don’t feel that I’m doing my job as the mother of Ryan Murphy, the “King of All Things” in my eyes. For some demented reason, I feel that if I worry enough and plan enough I can steer the ship away from the rocks and keep it sailing smoothly in the clear blue yonder to Happily Ever After. I know, I’m not God. I’m not that powerful. I’m a dreamer, a romantic, I believe in happy endings and I live by that saying that if you shoot for the moon and fall short, you will still be up there amongst the stars (apologies for probable bad paraphrasing and not knowing to whom to give credit for that saying). It may not happen by August 1st when school starts this fall, but God willing, Ryan will not walk into a poor or mediocre program as they existsright now (which I know is not challenging or positive or appropriate for Ryan and his potential). We can make it something better or find something else for him. The road less taken…that’s the one for us. I pray ’tis so. I’m sure this is not what Robert Frost had in mind when he wrote that famous poem, but reading his words, I think that the road less taken is clearly the one for us. It seems to have worked so far.
Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth.
Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same.
And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.
I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I–
I took the one less traveled by,
And that has made all the difference.
~~~~~~~~~Robert Frost, 1916
Now what? The first few months
So here we are at home with the brand new baby. It seemed so surreal. What should have been a joyous time in our lives had suddenly turned into what seemed to be a nightmare for us. We did our best to smile and talk with family and visitors who ooohed and aaahed over the baby while inside we were scared to death; afraid we would do something “wrong” with this child; that we were not doing something that we should be doing for him; that he wouldn’t ever wake up or that he would starve or get sick because he would only suck on his bottle for a few seconds or minutes and then doze back off to sleepy land again. I remember waking up in the mornings thinking, “Oh, ok, it was just a dream. Everything’s fine. No problem,” only to literally have the words DOWN SYNDROME appear in my closed eyes as if it was a billboard lit up in Times Square flashing over and over again to shock me into a new day. It felt like waking up just a split second before slamming face first into a brick wall. But there was a baby that needed to be cared for, our baby, our baby boy. Just like survivors of any trauma do, we had no choice but to sleepwalk through our daily lives. Before Ryan was born I had been planning to leave the legal profession, where I had been working since I was 18 years old and start my own freelance paralegal business from home. While still in the hospital after Ryan was born, I remember thinking, “Well, I can’t leave my job now; can’t take the risk of not having steady salary guaranteed; what about medical insurance?” and similar thoughts. Immediately I felt like I had lost control of my life just when I was trying to break free and do something that I really wanted to do and which I thought would really make a difference in my stress level and enjoyment of life. In retrospect, I think this was God’s way of making me stay in close contact with my dear friends with whom I worked at the time. I relied on them heavily for encouragement, moral and practical support. They were a Godsend. The daycare where my two daughters attended since their births (6 and 2 years older than Ryan) was also a Godsend. It was First Baptist Church of Biloxi Early Education Center (no longer in existence). The Director and the Asst. Director visited us in the hospital with a gift of a day-sized diaper bag already adorned with a FBC-EEC name tag with Ryan’s name written on it. They assured us right there and then that when Ryan was ready for them, they were ready for him. Nothing had changed. They wanted to care for him just like the girls and all the “regular” children (my words, not theirs). That was a huge deal in my mind…they didn’t reject him/us because he had Downs. They had never had a child with this kind of disability, but they were there for us and we were so lucky and blessed to have them in our lives. All through his years there, they worked with us to learn together and figure out what all of us could do to best care for Ryan while treating as much like all the other kids as was possible but yet providing for his special needs without hesitation or question. This was not our “family” church…we are Catholic, (I’m a convert) but I had been raised a Baptist and Mark and I were married at FBC 11 years before Ryan was born. Their support was not based on religion or church membership or anything except love and support and the staffs’ kind and caring hearts.
So after as many weeks as I could afford to take off from work to care for Ryan, I went back to work at the law office and Ryan went to daycare with his sister, the other sister in kindergarten at the public school. Another life-changing moment at this time happened one afternoon/early evening when my doorbell rang. A lady was standing there who I had met briefly at my oldest daughter Brittany’s school and she introduced herself as Genny, the mother of one of Brittany’s classmates. Their teacher (a girl Mark and I had gone to high school with) had told Genny about Ryan having Downs and she just stopped by to re-introduce herself and tell me that they lived right around the corner from us and if we needed anything she would be more than happy to help. That was the beginning of one of the most important friendships of my life. More about Genny later.
Looking back, at this time in our lives, I was thrown, fell or sank (all apply, in my opinion) into a deep and serious depression. I had suffered one previous episode of depression after my brother was suddenly killed (he was a fireman who died on the job in 1986 in a fire 7 years before Ryan was born in 1993) and even though my diagnosis at that time was Post-Traumatic Stress Disorder/Reactive Depression with generalized anxiety disorder, my doctor and I accepted and wrote that off in our minds as being completely understandable under the circumstances and I assumed that after some period of time, reflection, change of job, time off, meds, etc. I would get over that and all would be right with the world once again. So, things were better on that front (my state of mind) by the time Ryan was born but I don’t think I had really “gotten over” my brother’s death even after 7 years. I was unhappy in my professional life. I was over-stressed. I had severe mommy guilt because I took my two girls to daycare and even though I wanted to be a stay at home mom, I really didn’t think my personality was suited to that role and we needed the second income, so I kept on working. It was an everyday struggle for me emotionally, but I kind of thought at the time that every other working mom in a stressful job went thru in their emotions what I was going through. I was really just existing, looking for the “next” right thing to do…change of career was my plan to “happiness” before Ryan was born. Like I said, that all changed from the actual moment we got the Down syndrome news.
After discharge from the hospital, I was really disraught but still functioning out of necessity. Mark was better at being optimistic, but that is his personality. Always upbeat, always calm, always telling me “Everything will be alright,” but never really having any specific answers when I asked in a teary voice, “But what are we going to do?” I’m the worrier (ha! what an understatement!). That’s my job and I do it oh, so well! I’m the researcher and the planner and the director of all the “plans”….we must have a plan! That’s my creedo, so I began to look for resources, books to read, websites, asking doctors a million questions, having my sisters, family and friends quiz anyone they knew who had a child with any kind of disability to find out how they cared for their special child. It didn’t take too long (thank God for the Internet) before I discovered something called “Early Intervention”…but how early is early? How old are the kids when they start this kind of activity? No one could answer that question for me. All the books I found about Downs in the local libraries were old and they were very grim, black and white pictures and explanations of how to care for “retarded” children, descriptions of institutions that scared the scheisse (pardon my German) out of me. That right there is enough to plunge a new parent straight into denial, by my way of thinking. “MY child is NOT retarded! We can FIX this if I can just find the right book, the right doctor, the right PLAN!” I wrote hurried letters and sent off subscription and memberhip forms to the National Down Syndrome Society and the National Down Syndrome Congress and any and every other organization that I hoped might have a clue of what to tell us to do. I began getting magazines, I ordered more up-to-date books (*I’ll add a link here when I get a chance to a list of those resources), I contacted universities and state entities…I ran myself silly/crazy, literally, all the while caring for this new, special baby and working full time and taking care of two little girls, a husband and a home and a law office (by this time I’m Law Office Manager and Certified Legal Assistant…when you have a court date, you do the overtime and you show up to court for your clients…judges and clients don’t care what’s going on in your personal life!) I don’t know how I put one foot in front of the other during all that time (years). I just did. Mark’s life, God love him, pretty much went on as it was before, going to work and having his hobbies on the weekend, etc. while I (by my own design, I admit) “handled” everything else…doctor’s appointments, Brownie meetings, t-ball (he was active in the girls’ sporting activities), all our finances, etc.
Meanwhile, after a very scary (and expensive) bout of RSV pneumonia at age 6 weeks (which included a ride in an ambulance 90 miles from Biloxi to New Orleans to Tulane Medical Center’s Pediatric Intensive Care Unit and a 10 day stay there), Ryan continued to grow and thrive. While at Tulane for the RSV, they discovered that he also had a hole in his heart (common in babies with Downs we learned) known as an Atrial Septal Defect (ASD) and they thoroughly investigated him from head to toe since that was missed at the hospital where he was born. They recommended no immediate treatment for the ASD, but it required extra vigilence because that made it difficult for his little heart to get the proper amount of oxygen and from time to time he would suddenly turn blue which, of course, created quite a stir and required a fast trip to an emergency room. Quite stressful, as you can imagine. Also, as I mentioned, quite expensive. Thank God my husband’s insurance covered Ryan from birth, but with deductibles and charges “not covered” and all those other lovely excuses insurance companies use to get out of paying bills, we began to rack up a good bit of expense and credit card debt to pay for these hospitals, doctors, medications, breathing machines, trips to New Orleans, etc. while missing more work (and therefore, paychecks) because of all these medical problems. More stress. More worry.
Our Down syndrome Journey begins…
My journey in the world of special needs began on November 2, 1993. That is the day that Ryan Monroe Murphy was born in beautiful pre-Katrina Biloxi, Mississippi, my family hometown of over 200 years. I delivered our third (and last!) child by C-section around 5 p.m. that day and after a brief glimpse of my son in the operating room, I didn’t see him again until the next day (which right away made me suspicious). That evening, I was told that he was “a little jaundiced” and needed to be placed under the bilirubin lamp so he would stay in the nursery throughout that night…wasn’t I lucky? I got to get a whole night’s sleep uninterrupted before I began mothering my newborn. Early the next morning, I began asking, “When will you bring me my baby?” I quickly realized that the nurses were putting me off. A nurse finally asked me if my husband was planning on coming to the hospital first thing that morning. That sent up a red flag that something was wrong with the baby. Trying to placate me, the nurse offered that the doctor just wanted to talk to us before they brought us the baby. In an immediate panic, I got on the phone and called my husband to get their as fast as he could. I then called for both of my sisters to get to the hospital pronto. I told them that something was wrong and that they wouldn’t tell me what, but I knew that I needed my support system in place right away.
In short order, my wonderful ob-gyn, Dr. Johnny Mallett, came into my hospital room with at least one nurse (I honestly cannot remember if our pediatrician was there or not) to talk to my husband and I. I could tell by the look on his face that the news would not be good. He told us that there were a few clues noticeable in Ryan that led them to believe that he had Down syndrome. Of course, I had heard of Down syndrome, but in that moment, he could have said that he had Supercalifragilisticexpialidocious disease and it would have made just as much sense to me. I remember asking, “Exactly what does that mean?” I don’t remember the precise answer the kind doctor gave, but I do remember the room dissolving into tears-mine, my husband’s and my doctor’s all joining together into what we had no idea would become our departure into this Down syndrome Journey. It was like the breaking of the champagne bottle on the bow of the ship as we were cast off into a sea that we had not expected to travel. Just like the Sesame Street writer Emily Pearl Kingley described in Welcome to Holland, we had checked into the hospital expecting to checkout in Newborn Territory (which was somewhat familiar, this being our third child), but instead, we were now in the land of Down syndrome. So, after drying the tears (which continued to flow with the telling and retelling of the news to each visitor and family member), we were presented with this sleepy little bundle that seemed oblivious to the world around him, had little interest in feeding and we were told to just “take him home and treat him like any other baby.” ?Huh? ?What? He’s *NOT* just another baby….he has DOWN SYNDROME!” we exclaimed! “No matter, you’ll figure out what to do,” we were told. Oh, is the magician going to appear at home with us to tell us how to care for this special baby? NOT! Oh, I get it. There is a special doctor that we will see who will tell us what to do. NOPE! Oh, okay, then I’ll just get on the Internet and order a book that will tell us all about Down syndrome and THEN we’ll know what we have on our hands. HA! Good luck! So…….where do we go from here? …..to be continued~~~~~~~~~~Sarah Ohr Murphy (Great Grand-daughter of George E. Ohr, the Mad Potter of Biloxi)
