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.
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.
