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.
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
