Friday, May 29, 2009

almost sprang a leak

The scene: a football stadium, Catholic high school, upper-income neighborhood. Late May, hot and humid Friday morning.

The cast: 200 newly-minted high school graduates in green cap and gown, 1000 spectators in the stands, 50 or so faculty and staff in black gowns and multi-colored "hoods". One of them was me--black gown, pink and purple trim (isn't it interesting that pink is the official color symbolizing music?).

The actions included, but are not limited to, the following: sweating profusely, listening to speeches, watching 200 young people receive diplomas, sweating profusely, listening to Pomp and Circumstance being played over and over and over and over.....oh, and did I mention sweating?

But when it was over, and time to leave, I had a moment in which I wasn't sure I was going to hold it together emotionally. As much as I've had my spirit broken by that place, I'm gonna miss it too, in some ways. And as I walked around afterwards, looking for some of my students to give them one last hug or handshake, I felt drops of H2O leaking out of the corner of my left eye. And it wasn't sweat. I was determined not to spring a big leak, at least not in front of everyone. I managed to wipe away the drops, but they kept being instantly replaced by more. Slow and steady leak.....

I really didn't find the students I wanted to see, in the crush of people trying to get out of the heat. I chatted with a couple of teachers, several of whom still seemed to have not heard I was leaving, and then walked to my van. And that was it. Took off the gown and hood, and drove off of the island. Door officially closed on that chapter of my life. I didn't expect to react the way I did today. It's almost like I graduated too. When the speakers talked about "leaving this place that's been such a part of our lives, going out and making our mark on the world, making a difference" etc, it felt almost like they were talking to me too. Hope I can live up to the expectations--the ones I set for myself.

Thursday, May 28, 2009

Thursday thirteen

Stealing an idea from my blogger buddy Tafka is the debut edition of my Thursday thirteen!

13 Things about Me

1. I'm going to be a college student again starting in August! It still doesn't seem real sometimes, but I bet it will when I see the first class syllabus and list of assignments!

2. I love living in Lowcountry SC. Not sure I'd want to live anywhere else! There's so much to do and see down here, and I love just looking at the natural beauty of marshes, rivers, etc.

3. When I was younger, I always figured I'd have girls one day. I was such a "girly girl" myself, the complete opposite of a tomboy, and yet here I am with 2 active boys! But I wouldn't change a thing about that!

4. I've never traveled outside the US. Not even Canada. Truth is, I feel pretty deprived in that department, and I'm not sure I'll ever be able to rectify it either. My ultimate vacation (outside the country) would be to England...specifically London. I know, it's rainy and dark, but the history there is just such a draw for a nerd like me. ;)

5. The West Wing is my absolute favorite TV show of all time. When it was still running, I would literally RUN out of Wednesday night choir practices to try and get home in time to see the opening credits.

6. I am love-love-loving Facebook. I can't think of a better way to reconnect with so many people from high school, college, former students I taught, etc. On any given day, I can chat with my college housemates, music fraternity sisters, high school band friends, people from my church, family, coworkers of past and's simply amazing.

7. I'm trying hard to improve my eating habits, and to lose weight along the way if I can. Really have only lost about 7 lbs so far, but I'm optimistic and hope to lose at least 5 more before......

8. We're taking the kids to DisneyWorld for the first time in about 3 weeks! I cannot WAIT to see their faces, their reactions to it all. We're staying in the AllStar Music Resort (gee, I wonder why, LOL) and will do all of the Disney parks, plus Universal Studios and the Wet-n-Wild water park. Oh, and a Tampa Bay Rays baseball game on our way back home.

9. I am both fascinated and overwhelmed at the same time by the broadness of the autism spectrum. And I really do accept that my son is on that spectrum, but sometimes I feel like maybe we don't belong in that "autism community", like we're TOO lucky or too fortunate in how well Mr. L is doing. It's like we're in no-man's land, not belonging completely to either group.

10. As strange as this sounds, coming from a musician and music teacher, I really don't always like to listen to music while in the car. Especially after a school day, I just want to hear I listen to talk radio, or one of the comedy channels on Sirius, etc.

11. I'm a political junkie from way back. The 2008 election cycle was the most fascinating, exciting and amazing thing I've ever experienced in my lifetime of watching that stuff. Of course, it is always more fun when your guy wins, right?

12. I still have bitterness, anger, resentment and frustration in my heart regarding my preeclampsia experiences and the premature births of my boys. There is so much about pregnancy I missed out on, and that might sound trivial but to anyone who's been through what I did, it's most definitely not. I hide it pretty well nowadays, but it's there...jealousy, even jealous of dear friends when they "beat PE" or just have plain old normal easy pregnancies like everyone should have but some of us don't.

13. I am incredibly blessed, far beyond what I deserve. My boys are alive, growing, thriving, smart, active, funny, talented, and far too many PE survivors sadly can't say the same things. So when I complain, or whine, or have temporary amnesia, maybe you can help remind me about #13.........

Monday, May 25, 2009

packing up and moving on

Most band directors I know, and most teachers in general, teach at several different schools over their career. I'd say 3 schools is typical, even more is pretty common as well. K is in his 4th school right now, and I expect he won't retire from the current job, meaning there will be some more changes in his future.

And me? Only 2 so far, and if my career takes the direction I am hoping for (into Music Therapy) then I may finish my life as a teacher with only 2 schools under my belt. I taught at School 1 for 8 years, and now have finished 6 years at School 2. But tomorrow, I will finish packing up my personal belongings from my classroom, and turn in my keys. On Friday, I will go to graduation and march in with the faculty, listen to the seemingly endless list of graduate names being called, then get in my car and drive away from there for the last time. There are a few people around there, some students and some teachers, that I'll miss and wish I could stay in touch with. I'm not sure that I'll be able to, but it's a nice thought, at least. The school will be celebrating it's 100th anniversary in 2015, and I used to wonder if I'd still be around at that point.......I know it'll be a BIG deal in the community. But I've been ready to leave for a while now, just scared to make that jump. I'm at peace with it now though, knowing it was the right decision. Emotionally, I'm outta there already!

So, thanks BEHS for coming along at just the right time for me, and giving me the chance to teach Band part-time when I needed it. Thanks to the Band kids I taught there over the years......thanks for being brave enough to get out there and perform with me in front of your classmates, daring to thwart the "athletics is king" attitude that is so pervasive. I think we made some good music, and had some fun along the way. I hope you learned something, and that music will continue to be a part of your life. I never saw myself teaching high school, but I'm glad I had the chance to do so. We can remember Solo and Ensemble, getting soaked in the rain at Homecoming, the overnight trips to Myrtle Beach for Region, playing PDQ Bach, the Hey Song,'s been a challenging and mostly fun ride. Thanks for going with me.

Thursday, May 21, 2009

I can't believe I'm admitting this........

I recently was introduced to a blog I'd never seen before, and I've grown to really enjoy reading it. It's written by a fellow PE survivor, and Mom to 2 angel babies. Her most recent posting really hit home for me, and it's what inspired the upcoming confession you're about to receive. Check out her post called's very well-written and thought provoking. I know I won't do as good a job with mine as she did, but here goes..........

I have something you'll probably find quite surprising in my freezer. Go ahead, guess. Cherry Garcia ice cream? Nope. How about venison? (well, we're in the South, it could happen....) Nope, strike two. Ok, I'll tell ya. Small bags of frozen breastmilk.

I think this needs a backstory, don't you? It's painful to tell, but I've come this far so I might as well finish it. I am by no means a member of the La Leche League, not a "breastfeeding nazi" as I've heard the term used, but I had always intended to try breastfeeding when I had children. I am familiar with the health benefits, for Mom and baby, and just always figured I'd do it.

But the hard, unflinching reality of my situation is that I never was able to really breastfeed in the true sense, with either of my munchkins. Never. Preemies who are sick, on ventilators for lung issues, etc are not able to manage the suck/swallow/breathe routine well enough to do it, they just can't. The nurses in my hospital and in the NICU heavily promoted pumping the milk so that it could be available for my boys once they were ready, and I dutifully did my part. Starting on the day of delivery, and round the clock from then on, even while I was still a patient myself. Those lovely pale-yellow hospital grade pumps became my most intimate friends........pun intended. Nurses brought one to keep in my room, and there were pumping rooms outside the NICU too. I was given small plastic cups with yellow tops to collect the milk in. I'll see those cups in my mind's eye for the rest of my life. I desperately pumped and pumped and pumped until I bled, truly. I carefully collected every precious drop of the milk in those cups, and turned them in to the NICU secretary several times a day---festooned with little white labels on which I'd written Mr. L's name, and the time and date of the pumping.

Day after day after day during the NICU weeks, I pumped and pumped. Stressed and freaked out if I was going to be away from the pump at the time I needed to do it, always worrying about the never-adequate milk supply, looking forward to that magical day when they took the first drops of my milk and fed it to my child through an NG tube. One tiny cc at a time. "Ooh, today he's up to 2 cc". "I think we can try another cc at the next feeding". The milk had to be so carefully thawed after freezing, carefully kept cold during transport to the was so complicated and so artificial. Everything that the supposedly "natural" process of nursing your baby was NOT supposed to be.

When the boys came home, I kept on pumping, thanks to the hospital pump we rented for an exorbitant amount, and then thanks to a friend who gave us her pump she no longer needed. With Mr. L, the supply of milk just completely evaporated after his first couple of weeks at home......despite taking fenugreek, drinking fenugreek tea, you name it, I did it. With Energizer, I lasted longer with pumping, but as time went on, my supply did dwindle from its already-low level, and I wasn't able to keep up with his needs. I drank that horrid tea again, took Reglan (weird that its side effect is to help with milk production), and mixed the few ounces I could produce with some preemie formula. We were desperate for him to gain weight, as he came home still only weighing 4 lbs. 4.4 oz, a number that is burned onto my brain. Pediatrician was labeling him "failure to thrive", and the idea of a feeding tube was always dangling out there, to be inflicted upon us if nothing else worked.

And yes, in case you're wondering, I did try the act itself, after the boys were off of the vent. They still had oxygen via nasal cannula, and the suck/swallow/breathe thing still wasn't happening, but I did try. Both in the hospital and at home. Energizer would just cry and cry after we tried at home; I could tell he'd not gotten enough to eat, and how could I do what the BF nazis would say? "Don't introduce the bottle, don't give him an option, just keep doing it and he'll catch on" etc. Hmm, I think I value my child's life and healthy development over the idea of him feeding at my breast. If he gets the damn milk into his stomach, but it comes by way of a bottle filled with milk I pumped, what the hell difference does it make?

Gerber sells a handy little Ziploc bag designed for breastmilk storage, and it is here that my story comes full circle. The bags are made to stand up on their own, and are marked on the side with graduated lines to measure the amount of milk inside. I bought them, and began using those to store my milk at home, rather than the hated yellow-capped cups. I kept on pumping, getting fewer and fewer ounces every day, until Energizer was 9 months old. That's 3 months in the hospital, and 6 months at home. I'd thaw out a bag of frozen milk and ration it out over the day, so that each bottle he drank would have at least a drop or two of my milk in it, and the rest was Neosure preemie formula (one of the foulest smelling concoctions on earth). Eventually, I reluctantly stopped the pumping when it became clear I wasn't going to get any more for my efforts. And I slowly dipped into my frozen stock, until there were only about 3 Gerber bags left in the freezer. The last one I took out and thawed seemed freezer burned, if you can believe it, and he didn't like how it tasted apparently, so I just didn't thaw out any more, and I left the bags there.

I'd notice them occasionally, and think "how long am I going to keep those?", but just not have the heart to throw them out. When I'd rearrange the freezer contents, making room for new purchases, there would be those bags of milk, STILL there after many months, then years......Energizer is 5 now, and the bags are still there. At one point, I said something to K about it. Something very quick, and embarrassing, basically "don't throw those away, I'm not ready" and he has nicely accommodated me. This is so irrational, so insane, but it would feel like the final acceptance of my failure if I threw these out. The final blow, the final reminder of how my pregnancy, birth and parenting experiences have diverged from what I wanted in so many ways. And it hurts. I can't put it any better than that, it just hurts. It's been several years, I'm supposed to be ok now, right? Truth is, I'm not, and I guess I won't be until I'm ready to throw that milk away. I never breastfed my sons in the glorious "earth mother" way that comes so easy to so many, is so natural and has been practiced since the dawn of time......but as long as I have those bags in the freezer, I have proof that my body did in fact produce milk at one point in its lifetime. Not much else even proves I was ever pregnant, other than the precious lives of my children. No preggo belly pics, no labor......but I've got that milk. Check back in a few years to see if I've still got it. Betcha I will.

Wednesday, May 20, 2009

May is Preeclampsia Awareness Month, now you're aware of it, right? ;)

Seriously, I mention PE awareness because it leads me to what I wanted to discuss with you tonight, boys and girls. A few days ago, in my blog-visiting, I ran across a blog that had this image on it:

So, I checked out what the petition is, posted the image on my FB page and on this blog. One of my FB friends asked what it was about, so I explained briefly after consulting the official petition wording so I'd get it exactly right. And it started me thinking.....

I'm gonna admit something that will probably sound very selfish, or juvenile, etc, but here goes: I have a love/hate relationship with the March of Dimes. There, I said it. Yes, I did have 2 preemies. Yes, I've participated in the March for Babies several times (also known as WalkAmerica). My family was even a local Ambassador Family a couple of years ago, and I did newspaper and TV interviews, made speeches/public appearances, etc. And you're thinking, "so far this sounds like the love part but not the hate part", right?

Well, how can I sum it up? I think that the MOD must be looking at the growing problem of prematurity this way: There are some causes of prematurity we cannot prevent, cannot change, and do not even know why they occur. But some of the causes we CAN address, can help to change and make a difference. So we're going to pick our battles for the most part, working on those things that we know can be improved by our efforts. Consequently, so much of what they publicize has to do with educating pregnant women about "preventing preterm birth" as they put it.

While K and I were still serving as the Ambassador Parents, MOD invited us to the state volunteer conference. It was a night in a nice hotel, dinner on site with other volunteers from around the state, awards were given for money raised in the Walk that year, etc. We didn't have to speak at that dinner, and there was a big crowd so we were pretty anonymous. But it gave me a chance to see up close the "talking points" about what MOD is addressing, etc. And I came away feeling guilty and vaguely insulted or criticized. I know, that's just me being overly sensitive, but that's who I am.

In the text of the preemies' petition, it says this:
We urge federal and state policymakers to expand access to health coverage for women of childbearing age and to support smoking cessation programs as part of maternity care. Ok, so I guess that means if you had a preemie, you must have had no health care and/or have been smoking like a chimney, right?

Or how about this:
We call on hospitals and health care professionals to voluntarily assess c-sections and inductions that occur prior to 39 weeks gestation to ensure consistency with professional guidelines. Yeah, because I just chose to have my babies surgically removed from my body at 27 and 29 weeks, even though I should have waited longer. You know, avoid those pesky stretch marks by getting that baby out before anyone can even tell you're pregnant.

So often, on the surface at least, MOD seems to be conveying the message that the answer to the prematurity crisis lies in educating people, getting women adequate health care, and taking folic acid. Well you know what? Screw folic acid. Lot of %#%@& good it did me, huh? Obviously, those poor pitiful Moms of preemies must just not know any better than to do things that are risky, must not even have a doctor to care for them, must need our help, right?

Look, before anyone storms off in outrage, let me say this: I know that MOD has done and continues to do amazing work. Surfactant is a miracle, and it helped both of my boys survive, no question. And I agree with them that anything which causes a baby to be born too soon is something we'd like to change and eradicate. But I can't help feeling that, when I support MOD (speak for them, wear the shirts, sign the petition), I'm endorsing the public statement which (when translated) says: Hi, I'm a mom of 2 preemies because I did something wrong. Please help us so that no one ever has to make this kind of mistake again, or ever has to fail the way I did.

Told ya I was super sensitive. Please go sign the petition anyway, ok? Despite my insanity, sign it anyway. And support MOD in whatever ways you can. But look......when you do, just remember (and spread the word) that not all prematurity can be prevented, not all Moms of preemies did something to cause it to happen, which means it was not their fault! They'll still feel guilty (trust me on this one), but it will help them (ok, us) to be reminded that someone out there knows that what happened to our babies was out of our hands, not the result of ignorance or intent to do harm, but the result of a horrible disease for which there is no cure. That's how you can help fight the battle against prematurity........and you'll raise awareness of preeclampsia at the same time.

Monday, May 18, 2009

Not Me Monday

Several of my blogging friends have adopted this idea, so I decided to join in. The idea is that you describe several things that you have not done recently, if you get what I mean..........LOL! Here we go:

Today, I most definitely did not go a dermatologist for the first time, and he did not remove a suspicious mole from my face for biopsy. I am not at all worried about the results, which I won't get for a week.

I did not just turn the HEAT on in my house, because it certainly is not freakin' 55 degrees in South Carolina in May!

And lastly, I absolutely am not procrastinating (darn you, internet) about doing the lesson plans and reports I need to turn in for a teacher recertification class. Apparently, I do not plan to keep my certificate active when I do not go back to school in the fall........

Sunday, May 17, 2009

blog facelift

So, how do you like it? Super-gigantic hugs to my buddy Tafka for the awesome blog header she designed! You rock, girl! And then I got a matching background at Cutest Blog on the Block.......goes together pretty well with the header, I think. I love the whole brown/blue idea anyway. Yeah, baby!

Well, it's been a week since my Mother's Day shout out, and I've been busy finishing up school (WOO HOO!) and trying to decide what to write about next. I don't want to get all mushy on ya, but my thoughts keep coming back to the fact that I'm closing a chapter of my life as we speak, and continuing to hope and pray that this move is the right one. Because I am an official Broadway-musical nerd, the quote that comes to mind is one from The Sound of Music......"When God closes a door, somewhere he opens a window". So today, that door closed when I conducted the chorus in the Baccalaureate service for the seniors. Felt strange to know that I won't be doing anything like that again, at least not any time soon.

And in yet another nerdy allusion, as I closed the door of my classroom when I was about to leave, I remembered how the very final scenes of several famous TV shows had this moment where a character would turn off the lights, stop at the door and look around wistfully for a second, then close the door and walk away. I know the Mary Tyler Moore show did it, and I think Cheers did too. I am such a sap, it's pathetic.

Kids are doing well, baseball season's chugging along with Mr. L's team at 4-1 right now. Energizer made a friend for life this afternoon at a restaurant where we ate supper. It's a barbecue place, and we'd never tried it but it turned out to be very good. E had just had a mini-nap in the van on the way there, so was still groggy and subdued at dinner which is always a good thing where he's concerned.

Anyway, he wanted to order his own food, so he softly told the waitress his choice, "chicken fingers" when she came to take the orders. When she brought the food, he was so excited to see it that he leaned over across me in the booth, took her hand and kissed it like a true gentleman! She was so surprised and touched by it, you could really tell. :) Then, as we were about to leave, we stepped out of the booth and started getting raincoats on (DON'T get me started :( ). She came back over to say goodbye and thank us, etc, and he gave her a big hug! Granted, it was a hug around her thighs basically, since he's still such a little guy, but that was ok with her! She kept saying how sweet he is, etc etc. :) No argument from me on that one!

Sunday, May 10, 2009

To my special sisters

Today is Mother's Day, and it's my day to be discriminatory.

What I mean is......every mother loves her child, and they are all to be appreciated and valued, not just today but every day. But as a member of a smaller group, the moms of special needs, I selfishly want to take the opportunity today to recognize and celebrate that very special sisterhood. The essay below says it far, far better than I ever could. And if you, the reader, are a part of this sorority (you'll know it if you are), then you have my prayers for you and yours, and wishes for a wonderful Mother's Day, today and always.

To You, My Sisters
By Maureen K. Higgins

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.

We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychiatry.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.

We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.

We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

Wednesday, May 6, 2009

can I really do this?

I had a real "shake me up" moment this afternoon, while Mr. L and I were at the therapy clinic where he goes weekly for a social skills/speech therapy group session. The mom of the other group member (M) needed to talk privately to the therapist, so Mr. L and I were sitting in the floor in the lobby playing a board game with M. Things were going well, I was feeling pretty good about my ability to facilitate their interaction and keep things running smoothly......then, another therapist walked in from outside along with her patient, a boy I'd not seen before.

Trust me when I say that this boy, approximately age 11 I'd guess, has autism. Pretty severely, based on what I saw. And something, I don't know what, was really upsetting and frustrating him. He was very reluctant to even come inside, and once he got in the door it just escalated. He didn't want to go into any therapy room, even the "gym" where they have the swings, balls, etc for sensory work. And he was making loud noises, VERY loud, and eventually screaming and it just sounded so painful and sad.

Well, the two boys in our group, Mr. L among them, were not happy about the noise the other boy was making. They were alternately covering their ears, making faces, or saying things like "why is he being so loud?", "what's going on with him?", "he needs to stop that", etc. I tried as much as I could to stop those kind of comments, and to tell them that everything was ok but that the boy just seemed to feel frustrated. Truthfully though, his screaming was pretty darn loud, ear-piercingly loud at times. And the therapist was trying hard, talking to him in a calming voice, reassuring him that they could go do things he liked (i.e. swing etc) but nothing was working.

The boy was about the same size as the therapist, meaning it's not like she could physically assist him into that room or do much to help when he throws himself onto the floor, which he did. Then he started hitting himself in the head, and she kept telling him "no, we don't do that, please stop" etc. I have no way to know any details about the boy's diagnosis or situation, but I think I know an ASD meltdown when I see one, and I was witnessing one today.

As the episode progressed, I started to think.....oh my goodness, what if that therapist is me in a couple of years? Listening to that child's screams was just heart-breaking to me. I felt my heart rate go up, and I felt at least some degree of the worry, frustration, anguish, fear and the myriad of other emotions that I bet that child's therapists and family members feel often. Because I am an ASD mom too, and have suffered through public meltdowns when nothing you do works and you feel so helpless and hopeless.

How will I manage this when I'm supposed to deal with it in a professional context? When it's someone else's child, and I don't know the little tricks and strategies that sometimes work to avert meltdowns for him or her. If just being a "fly on the wall" as I was today got my pulse racing and my heart aching, how will I function and keep it together as a therapist? I really was almost in tears today, watching and listening to that young man and that therapist. And so I started wondering whether I've made a terrible mistake in deciding to go down this career path......have I set myself up for failure, will it be too hard to maintain the professional demeanor and "detachment" because I won't just be a therapist but an ASD mom as well? Nothing I can do or would ever do will change that fact, nothing can take away what I've learned and felt in the past 7 years of parenting Mr. L. But will that very experience be my downfall and prevent me from success in Music Therapy? I thought it was going to be my big asset, and now I'm wondering if it's a liability instead.

Tuesday, May 5, 2009

20 years, really?

A certain realization kind of smacked me in the face a few days ago.......this month marks the 20th year since my graduation from high school. OMG, are you serious? I'm 37, turning 38 this summer, and it seems like those 20 years went by in about the time it takes you to snap your fingers.

When you see sitcom episodes about 20th high school reunions, the people have always seemed, so old. And I don't feel like that, I really don't. It seems impossible that the Class of 1989 at BSHS can really have walked across that windy football field 20 years ago to receive our diplomas. I was 5th in my class, and back then (see, I do sound old) it was accepted practice for the 5th ranking graduate at our school to read the Benediction prayer at the close of the ceremony. My lovely flat-topped cap with its gold tassel nearly blew off quite a few times while I was speaking, and I had to hold on *tightly* to my note cards to keep from losing them.

And let's don't even talk about college graduation and the fact that it was 16 years ago.......seems equally unreal to me; it can't have been that long ago. I really don't feel like I'm all that much older than the students I teach, but in reality, I am. And the gray hairs I see in the mirror are proof. Plus, the other day one of my high school freshmen told me that her Mom is 41....ok, there is NO freakin way I can imagine myself with a 9th grader right now. 2nd grade is tough enough, thank you.

K and I went to our 10th reunions (he's the same age, went to our rival school across town!), and they were fine but I don't see a reason to go to the 20th. If we even have one, that is; I've heard nothing so far about anything being planned, and neither has he for his school. Plus, with the advent of Facebook and its "trickle up" effect, nearly all of the people I might be interested to see and catch up with at a reunion are now my FB friends and I can "see" them and talk to them whenever I want. K's theory is that Facebook will doom many high school one will choose to go because there's really no need.

So anyway, Happy 20th to all of you Class of '89 kids out there, from my school and everywhere else.......and just for fun, take a look at your old yearbooks and get a good laugh looking at our old clothes and hairstyles. ;)

Saturday, May 2, 2009

the brilliance of the blogosphere

First of all, I love that word....."blogosphere". Just thought I'd share that. ;)

Second, I find myself so humbled by the great writing and brilliant insights of several of my blogging friends today, so I decided I'd defer to them and share their posts with you in case you hadn't seen them. These 3 are posts that really speak to me, about topics over which I am very passionate but maybe just don't express myself as wonderfully as these ladies have. Enjoy!

Kyra at Hopeful Parents wrote here about the so-called "neurodiversity" debate in the autism community. Are we trying to "cure" autism, can it even be cured? Or are we, as the ASD parents, supposed to be embracing the autism because it's who our children are and can never be changed?

Random Ramblings of a Mom has a recent post that's just so incredibly applicable to my'll see why.

I "found" Alexa (from FlotsamBlog) after hearing her read a blog post aloud on NPR one morning, and I'm so glad I did. Wonderful writer, wonderful lady with a beautiful baby girl and her very own angel in Heaven as well. Here she writes eloquently on another topic close to my heart, though it's one I don't speak of much nowadays, and many of you might not even have known it affected me at all......infertility. Thanks, Alexa, for putting into words what so many of us feel.

Hopefully I'll feel inspired to write something original of my own again asap.......that is, unless you're so in love with these other writers (like I am) that you don't want to hear little old me anymore!