Tuesday, March 30, 2010

Compassionate Professionalism

Today, I was invited to speak to a great group of  neuro-pyschologists.  I didn't prepare formal remarks (a la Powerpoint slides). I did, however, talk about the work that I do helping students with special needs. My practice, I explained, is based on the principles of something I call Compassionate Professionalism. Meaning, in a nutshell, that I am good at listening, formulating strategy, listening, advocating in a TEAM meeting, listening, and following through to ensure my clients get the help they need. Did I mention I am good at listening?

It's either my greatest quality, or my biggest curse, but I am compassionate by nature. I always want to help people, and care a lot about the quality of work/friendship/commitment I give to others.  A few friends used to jokingly refer to me as "the Hallmark lady" because I always remember birthdays and anniversaries, and often take the time to send a card "just because".  I am sure a shrink could trace this quality back to my infancy and having been left at an orphanage in some "pyscho-babble-ly" way. But, I care a lot about people, don't seek to hurt anyone, and *think* people who know me would say I am friendly, warm, and kind.

In my work, like any other, you have to draw boundaries. That's a challenge, because I do make a point of getting to know my clients and their families.  I share my own stories of advocating for my kids, saying what worked as well as the mistakes that I made.  But, always, without fail, I listen.  By nature, I truly believe that all people who are struggling want to be is "heard".  It is not only the compassionate response to listen, it is the "right" one.

In addition to wanting their child to succeed and get the right services, all parents truly want is to have their opinions, as equal members of the team, respected. People come to me broken by the system and frustrated.  They have been told "no" by schools systems which (usually) aren't doing their jobs. These dedicated parents think that they are a) going crazy to think their kid needs something when the school doesn't see it, or b) so angry, they can't have a productive relationship with their school district. No one is happy to call a special education advocate- I get that. Be it the emotional turmoil parents of children with disabilities all go through to varying degrees, or the financial implications hiring an advocate brings, or both, people are stressed when they call me.

My job is, first, to listen with compassion and kindness. Next, my ethical obligation is to tell them I can't guarantee outcomes, but rather explain what I will do first, which is take a detailed look at their child's records. Sometimes, I am faced with telling parents that what they want in their hearts for their kids is not realistic.  I always tell people to get second and third opinions, and I insist (usually to their amusement) that potential clients check my references.  I don't do this work for money or prestige (neither are to be had in this line of work), I do what I do because I care about people and also because I am good at it. 

In the end, I try my hardest to help kids. As in my life, I never seek to hurt anyone, but I don't shy away from sticking up for my interests, or those of my clients, when the opposing party is unreasonable.  I wonder what my clients think about my "style", my work, and just hope they know I will always be there to listen. And, as a bonus to them, I usually forget to bill for it!

Saturday, March 27, 2010

Is it that time of year again?

March brings with it the start of spring. As evidenced by the warm weather we have just had, the coming of a new season always make for an interesting month.  For us, it's a busy time. The girls just started taking some soccer and swim lessons, Andrew wants to walk on the treadmill at the gym during their lessons (poor kid can't figure out how not to fall off), and work is busy. Too many schools not doing the right things for kids makes for a busy week.  Volunteering at a local school has proven such a great experience as well.  I took out my bike and went for a ride for the first time in months and it was amazing. Horn Pond is down the street and a great place for some mellow mountain biking and hiking.  The kids and I hiked up the hill that is called "Horn Pond Mountain"; it is so pretty at the top.

March also brings with it a very bitter memory. My best friend Kim had a major pyschotic breakdown on March 11th a few years ago. As in she thought her TV's were bugged and her work and the government were spying on her. The circumstances which are most painful (seeing her with clumps of hair pulled out waiting for an ambulance to take her involuntarily to a hospital after I got called to pick-up the kids) have truly scarred me  The fall-out, (I call it the "domino effect") makes me shudder. This person is no longer a friend sadly. Her family took and took and took from me and my family, yet never reciprocated when it was our turn to need some good friends.  What a bitter pill to swallow.

I wish I could make this post "lite" and funny, but visiting McLean Hospital for the first time, with the "Girl, Interrupted" pre-conceived notions floating in my mind, was an experience like no other. There were not dark hallways or restraints. There were very sick people, lots of staff, phones in booths, and rooms with furniture bolted to the ground, windows that did not open. The worst part was that for days she didn't want her family to know. That left her friends, ok just us, to take care of her kids and support her and her husband. I chose, for my family, to take on a care-taking role like no other.

It seems she has found peace (or whatever she considers that to be) and that is good. She was one of my best friends and she left an indelible imprint on my family's life.

I, for one, will be very happy when April appears on the calendar. (Selfish wish... Maybe we'll get a whole month with no rain after the monsoons we've been having this March!).

Happy Birthday Miss S

We're celebrating Miss S's birthday tomorrow afternoon. While her actual date of birth is a few weeks off (being born in the middle of April vacation every year is not schedule-friendly for your friends to come to your party), it is amazing that my "baby" is going to 8!

Sarah is a completely wonderful mix of funny, vibrant, intense, & joyful. She has created the most unique dance that we have dubbed "the Sarah dance".  Being keenly aware that she is indeed #4, Sarah fights for attention without apology. She makes everyone around her laugh.  She also gives 110% to everything-- and is fighting like crazy to overcome some weaknesses in writing and reading. By far the most creative of the kids, she stretches this creativity and makes the most lovely projects. As I write this, she is creating birthday cards for some dear friends.

She has "gone with the flow" during a *really* awful few years, and gives the most wonderful hugs. I worry a lot about her, about how the divorce and subsequent events would affect her, but she is so smart that she seems to know what is right and what is wrong almost intuitively.

I know she hurts sometimes and wishes for her family to be together again. My heart aches for the things she won't grow up with. But, I do know she has a lot of love from me (and from her dad) and we will stay constant in her life.  Maybe it's the bond of having nursed her for so long (ok, well long for my babies, I consider 7 months a *really* long time), but she and I share a very special connection.  In many ways, ok most ways, losing my last pregnancy, as crappy as that was, was for the best.

I know I have the option of having another baby, but today I just want to think about Little Miss S and remember that the day she was born was one of the happiest days of my life (ok, minus the lack of an immediate post-delivery morphine drip at MAH).  She brings so much love and light into our family's world, I can't imagine my life without her in it.   Happy 8th Birthday Party S.

Wednesday, March 17, 2010

Do they have a clue? My life as a special education advocate

I work for kids with disabilities. More accurately, I work for their parents. I help them in the long road that is getting school districts to do their jobs and follow the law.  Advocating for children with special needs is something I started doing about 6 years ago, when my baby was still a baby.  Back in those days, my own kids got what they needed at school, but I can't give myself credit for that. For as uninvolved as their dad was, we had a phenomenal special education advocate/attorney, as well as representation from Massachusetts Advocates for Children and another private attorney who worked with them.  Be it a 1:1 aide, integrated summer programming, or even a preschool classroom for my daughter, we were always successful and I always felt happy (and relieved) when the kids got something they needed that the school district wasn't quick to offer at first.

During a time of unexpected unemployment for my husband, I was offered a contract at the Federation for Children with Special Needs. I was charged with co-developing a training and then analyzing the feedback from a few hundred participants.  In addition to doing staff training for the Early Intervention Training Center, I also presented FCSN trainings ("Basic Rights" and "Turning 3"). I was good at it. First co-training with the director of my daughter's EI program (who went on, after she was no longer a professional in our lives, to become a dear friend), then doing solo trainings, I realized that people listened to what I had to say. That probably has something to do with the fact I like to talk. A lot--- and sometimes have a hard time being quiet.

After the FCSN contract finished, I took an advocacy training and started helping friends and acquaintances. Soon, I was helping our local DMR office with some of their clients education needs. It was soon after that I took my first paid clients.

There is a lot of guilt for me in taking parents' money. To be frank, my husband and I could never have afforded an advocate if not for our own kids' DMR (now DDS) flex funding and the generosity of his parents.  So, accepting payment for something I think everyone should have access to and which I know is hard to pay for when you live paycheck-to-paycheck, was and continues to be, hard for me.

Once I started going to other folks' team meetings and going toe-to-toe with special ed directors, and obtaining what the parents wanted for their children, I realized I was onto something.  I had finally found something in my life (except my kids) to be passionate about. One district turned into 5 ,and 5 is now about 25. In nearly each of those places, I have been able to help kids by winning concessions in the form of services, therapies, and sometimes even school placement.

I was on a roll. In this business, the highs are very high, but the lows are pretty low.  In the past few months, in districts that are known to be tough, I haven't always gotten what my client wanted. And I feel bad about that.  Really bad.  Not because I didn't get the high of winning, but because the "victim" is a little kid whose parents just want him or her to be educated the way the law allows them to be.  In one week, I helped obtain and then wrote a settlement for one client as a way to end a dispute over services that weren't being provided even though they were legally supposed to be. That same week, another client's school district filed for hearing (special ed lingo for bringing a lawsuit I suppose) over a small issue. Yet another client's family is being railroaded by their Early Intervention program. Yikes!

I make it very clear to people I can't guarantee results and I don't make promises.  I don't think I have a client who is angry with me about an outcome. I can count on one hand the number of parents who hired me and didn't get what they wanted.  Those people continue to call me and I don't think take it personally. But, that's the thing. I do take this work personally.  Perhaps because my own children have special learning needs, perhaps because since my divorce I haven't been playing the role of sole-parent-to-deal-with-the-school-system... I feel like I owe it to these other children to fix the imperfect situations they are in.

I don't charge a lot of money. I haven't figured out how to bill for my time on the phone with clients (I suppose I could use a portable timer). I take about half my cases at a reduced rate or pro-bono.  I get attached to my clients. This is not lucrative work and any special ed advocate who charges $150/hour is out of their mind and should be arrested. We're not lawyers, don't play them on TV, and shouldn't represent ourselves as such.  I heard tonight from a friend that a fellow advocate does, if fact, charge $150 hour for even her travel time. That is disgraceful in my book. No sped degree, no law degree... Special education advocacy is wholly unregulated in Massachusetts and there are people who will scam you without batting an eyelash.

School districts are unique organisms. They have really great people in them, usually teachers and support staff, and some have great administrators. However, almost without exception, special ed administrators come across as patronizing, budget-conscious, and usually nasty. Why would someone choose a profession like that? I imagine that when they started out, they just wanted to be teachers and to help kids. Yet, these people (mostly women) can, and do, torture well-meaning parents, drive mothers to tears, and excel in *emotional warfare*.

Parents often have no idea what their rights even are.  Letters are written so mysteriously that no one understands what the school means. Laws and regulations favor school districts. My favorite example: When you obtain an independent evaluation, the school has 10 full days to review it before your TEAM reconvenes.  Yet, when schools do testing, they are only required to provide reports to parents 2 days before the meeting, and only if you ask for them. Makes no sense.

School districts need to be mindful of their budgets. I get that. But I don't think these administrators know how much pain they cause to many families who are already struggling with raising a child (or children) with disabilities. So, my two cents is that, no, they don't have a clue. But, I do hope in some small way my work can help balance the innate unfairness of the system and help kids who are already vulnerable. Last week was a bad week in some ways, this week is better. If I can say I helped a kiddo get something they really needed, or helped a family recoup some unexpected costs, I can look at myself in the mirror and be happy with what I see. Children are our future and we should all expect school districts to do the right thing. Sadly, we often have to force their hands, but when that does happen, it is a small act of grace and something I am so thankful to bear witness to in my life.

Thursday, March 4, 2010

Am I the cool mom? Umm, no.

Topic: Pop culture awareness. Comment: I don't have any. I must live in a bubble, because I haven't seen Avatar (for the record, it doesn't even interest me), and don't know half the singers the kids want downloaded to the iPod. My daughter is bemused by this. Today, after I had admitted my clue-lessness, she asked what other movies I had not seen that were popular. At the time, I was stumped. Now, I acknowledge my lack of knowledge is pathetic as I ponder the top films of all time.

Out of the top 20, I have seen 7: Titanic, Shrek 2, ET, Jurassic Park, Finding Nemo, Forrest Gump, and The Lion King. That's about 33%.  The other 13 are what I consider "guy films"- action, sci-fi, many violent in nature.  Not my cup of tea.

I love lots of 80's movies: The Breakfast Club, Pretty in Pink, Back to the Future, When Harry Met Sally, and, of course, Dirty Dancing. But I have never seen Fatal Attraction, Wall Street, or some of the other more prolific films of the decade.  I've never seen Pulp Fiction, Unforgiven, Fargo, or Saving Private Ryan (although I did love American Beauty and saw Silence of the Lambs and Schindler's List (the latter two caused many sleepless nights). I HATE violence, blood and guts and gore and it seems like war-themed movies, and movies about crazy people killing each other are very popular. (Plus, the movies about pyschotic people, ala Single White Female, also freaked me out).  Let's face it, I didn't even choose to watch any of the Nightmare on Elm Street or Friday the 13th movies because I hate horror movies. (Come to find out many years post teenageadom, they weren't really that scary, rather just campy).  Yet, I did watch Cape Fear, and it scared the hell out of me.

It's not like I know a lot more about current music. That is even sadder to write about.

What I like to do today, that I have always enjoyed, is read. This may cause horror, however, I hate the classics. Sorry, Mr. Yore, but I despise Moby Dick and I don't understand its meaning to this day.  Sorry, Mrs. Nash, but I have never been able to grasp the fuller meaning of "A Wrinkle in Time" either.

I love books about politics and novels, but not historical fiction. When I was 16 or 17, I worked at Waterstone's, an upscale book-store in the Burlington Mall.   Each bookseller was assigned sections that were their responsibility to keep stocked and orderly. I got Music, Women's Interests, TV and Movies, and, somehow, Gay and Lesbian. Perhaps not what is appropriate to give the underage employee given the graphic content of some of the books. We had a wonderfully lenient lending policy, where employees were able to borrow books overnight. Heaven.

I am always a few months, or years, behind on seeing the popular movies. Part of this stems from the fact I very much dislike going out to the movies and would much rather watch a DVD at home. I am actually happy watching Enchanted over and over again with the kids.  Come on, who tires of watching anything with Patrick Dempsey in it?

Ahhh... the children will survive DESPITE having a severely un-cool mom.  I will continue my pursuit of outdoorsy activities and reading good books. Life will go on. But, pop culture and I will never be quite compatible. I'm ok with that.

Monday, March 1, 2010


I recently read The Happiness Project: Or, Why I Spent a Year Trying to Sing in the Morning, Clean my Closets, Fight Right, Read Aristotle, and Generally Have More Fun by Gretchen Rubin. The book certainly gives its reader a whole lot of ideas.

There have been lots of "happiness"experiments the past few years-- some successful, others not. Come to figure out that exercise (that endorphin thing...)  plays a big role in my physical and emotional health. But--- downhill skiing will never be my thing as I can't seem to conquer my fear of heights (and ski lifts!).  In contrast, I realized that cross-country skiing, especially with a friend in tow, is a lot of fun.  Also not my "cup of tea", outdoor activities where there is no electricity or real bathrooms.  Almost as a (physical and mental) challenge to myself, I took up biking. Through this, I realized that biking far away from cars is best for everyone's safety's sake. But I am having a blast riding and exploring.

Alas, I have concluded that I never have been, and never will be, someone who is "artsy and crafty" and can find her way around Michaels or AC Moore with so much as a clue. Scrapbooking became another (expensive!) failure.

On the other hand, I can do 6000 pounds of weight resistance/lifting in an hour and feel great about it afterwards, something I never did before. Going to the gym a few years ago meant using the treadmill or the bike, or it was just doing a yoga DVD in my living room.   Now, it's about working on my core and strength, in addition to the cardio stuff.  I'm loving it!

Working & volunteering has provided much happiness recently in my life.  I get a real high (there go those endorphins again...) when things go well and I am able to help a kid with special needs. Today, I was told a district with a reputation for being pig-headed and stubborn, was either very impressed or very scared of me. LOL. Kids get what they need with my help. I have a job where I don't just push paper around (no offense to those of you who do).

My kids provide me with enormous joy. Seeing the amazing people they are, and knowing they are growing up with the guidance of a mother, and others, who love them unconditionally, is humbling.  But, also knowing they they don't always like me because of the limits I impose, makes me happy.  I don't want to raise spoiled kids and I don't want to raise mean kids (you know those kids, the ones who throw rocks and sticks at the other kids and turn into bullies).  If I am doing a respectable job balancing all the things one is supposed to provide their children, most of all love and stability, I can be happy.  (Notice I am trying very hard to stay away from the a-word: "autism"?.  Parenting a child with a disability, while finding happiness at the same time, is something my friends like Sue Senator do much better than I.)

Getting pets has made me happy. My cats are sweet, playful, and mellow.  My previous experiments with animal ownership had been pathetic-- fish that died quickly (how do you kill a betta fish???).  The kitties make my heart smile on the days I don't get to see the kids.  Bonus: they are always up for a snuggle.

Being happy doesn't mean you're perfect. In fact, I love how the author writes about how all her quirks play into who she is. Being a completely imperfect person who has not always treated people the way I want to be treated makes me normal. It doesn't make me happy to know I've not always been the person I wanted to be, but it does make me happy to know that you learn from the past as you move forward.

What truly makes me happy? The entire concept of "paying it forward" does. Passing on the love and support shown to me, or resources, to make someone else who needs them. Maybe more than me, maybe not- that part is irrelevant. Oftentimes, you can pay it forward with your knowledge. I think of the countless families I have just talked to about how to help their kids, never actually being hired, and the many families who I have provided pro-bono or reduced fee services to. Hopefully, my time has made their journeys a bit less rocky.

Having been hurt, and knowing how awful that feels, makes me strive to do things which will brighten someone else's day, will help them through a personal struggle, or might just make them smile. Sometimes just listening to someone can markedly improve their day. I'd like to think I have played some small role in healing rifts in relationships some friends have had.  Lesson number one in my own personal quest for happiness as it relates to my friends' lives:  if they are in a bad relationship, I need to set limits or else one can *easily* get drawn into someone else's life and drama.  But, you can always listen and choose to dispense advice (sometimes requested, sometimes not).

I am blessed to be able to offer gifts. No, never large sums of money.  Rather, my time and a listening ear. I'd like to think that what makes me happy is being a good friend.  The enormous joy that my friends, my "chosen family" if you will, bring to me is something which has been sustaining through even the darkest days of the past few years.  (Part of me remains confused by how the best of friends, be it platonic ones or romantic ones, can just disappear from your life without warning. Life is too SHORT for regret.)

How do you define happiness in your life? What could you do to smile more, feel less stressed, and be happier? Think about it. 

I'm not there yet, far from it probably and the last 4 years almost to the date have been an uphill climb, but I'm certainly working on it... Ironically, the simple act of "helping" those 4 years ago is what caused a lot of unhappiness in the long run.  Rest assured, there are lots of things which make my heart smile that I never thought would and some things which I thought I needed to be happy which apparently I *can* live without.

Happiness is a gift I try to give to myself. It's a gift I hope I provide to my kids. It's a work in progress... but my happiness project is underway...