What is a "snazz"?

Andrew is a quirky kid. After he attempted to pat our one remaining cat, Maddie, he declared to me, "Maddie snazzed at me."  "What on earth is a snazz?", I wondered. I asked Andrew to demonstrate, and he makes a hissing sound and face.  Apparently, Maddie asserts herself when Andrew gets too close or too rough. I think the term "snazz" is hilarious- I love these "Andrew-isms".

The progress he has made is wonderful to see, but the increases in behaviors and anxiety, both of which seem to have peaked in the past few months, are painful to witness.  From the ear-piercing screams, to the anxiety-ridden few hours before a transition, to the complete disgust he has for his sister which manifests anytime he is alone with her (and an adult) in the house ("it's Andrew and Sarah time"- yelled frantically followed by stimming) it sometimes looks like he is crawling out of his own skin.  He doesn't have any friends either.  The lack of social reciprocity is much starker now that he is a 4th grader.

In some ways, maybe the autism has been a blessing. He has been unaware of a lot of challenges and stressors, in stark contrast to his sisters.  His future is something I have been doing a lot of thinking about recently. Will he be able to take care of himself independently? Will he go to college? What kind of job will he have?  Gone are the hopes he would "lose the diagnosis", as I was told he might many times when he was younger. 

I'll hold onto the moments Andrew wants to talk and engages in wonderful conversations, the times he crawls into bed next to me for a snuggle, or when he spouts off his "Andrew-isms".  There is an amazing little boy inside whose autism sometimes holds him hostage.

Out with the old

The coming of spring is a good reminder in my house that it's time to de-clutter! Moving 3 times in two years has done wonders for the amount of *stuff* (ie: junk) that I own, however there are some things that never seem to get thrown out that should be:

1) Shoes-  How do you know when they have accounted for every cent of what you bought them for? Seriously, the kids' shoes from Stride Rite cost a fortune and mine are not far behind.  Today, 5 pairs of kids shoes and 3 pairs of mine (all about 5-10 years old) made it to the trash can.

2) Pots and Pans and other kitchen utensils- I have had most of these items since I got married 11+ years ago.  I'm not even much of a cook, but one frying pan had been cooked in and washed enough it made it into the garbage. One of the knife blocks and accompanying knives also joined it.  Thank God for Corelle dishes- they never seem to get old.

3) Jackets- If a winter jacket hasn't been worn all winter long, it's time to donate it to someone who actually might wear it.

4) Outgrown kids' clothes- Given that my son is the pickiest dresser on planet Earth, I have more boys size 8 clothes than he will ever wear and I have space to store.  The girls also have a healthy assortment of size 10 and smaller clothes. Wish I owned my own consignment shop.

5) Kids schoolwork- There are literally boxes of this in my house. However, I can't bear to throw any of it away. Ditto for IEP's, progress reports, and even Early Intervention reports.  There are at least 3 boxes for Andrew alone.

6) Exercise clothes-  There is nothing as unforgiving as bike tops and bottoms. Every ounce can be seen when you wear these spandex-y items. I went down a size from last summer/fall- so I desperately want to get rid of anything in an XL.  Need to keep one item and pitch the rest of 'em. (And remember the yo-yo weight gain and loss needs to stop. In three years, I lost and gained the same 25 pounds like 5 times. Now that I am 25 pounds lighter than that- it would be oh-so-nice to maintain this or lose more!)

7) Stuffed animals- Anyone of you who have kids know what I mean and require no further explanation.  The creatures seem to multiply :-)

8) Food in the fridge and pantry- As I might have mentioned before, I am not much of a cook.  I am also a really bad grocery shopper. A full quarter of what I buy that is perishable goes bad before we eat it. There are items in my pantry which have gone through my previously mentioned 3 residences. Ok, I think I just answered my own question of how to determine what of that I need to pitch.

Happy spring cleaning and de-cluttering! Warm wishes for Happy Easters and Passovers, too. (Went to my first Seder this week!).

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!

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.

Happiness

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...

Childhood reflections

The rain pounds against the windows, the chill in the air hasn't subsided in quite a few days.  The outside elements have perhaps put a damper on lots of people's spirits.  I can't get into watching the Olympics, which is neither here not there. I don't watch American Idol. Conclusion: My current pop culture awareness is pretty low.

However, today came the news that an actor named Andrew Koenig from the 80's/90's hit show "Growing Pains" had taken his own life after a long battle with depression. This has bummed me out inexplicably. Koneig played "Boner", Mike's friend. The actor who portrayed Mike, heart-throb Kirk Cameron, made a plea to Koenig the other day: "Call me. Mike and Boner can get through anything".

The tragedy of losing this young actor is sad, but it's also a reminder that I am old. The shows I grew up watching (Growing Pains, Who's the Boss, Webster, Perfect Strangers, The Cosby Show, Family Ties, Facts of Life, Different Strokes, and if I "really* think back, Eight is Enough and Little House on the Prairie) were integral parts of my growing up. I rode my bike in my neighborhood and sometimes made it up to Mountain Road. I played in the woods and made forts. I had a friend who lived on the end of Mountain Rd. towards Winn Street that I visited a lot.  My childhood was very simple, and very sheltered in a good way.  I was smart grade-wise, not very comfortable or smart socially (the brown skin and lack of coordination did not help), and for many years got along with pretty much everyone. I still remember completely freaking out when walking into Kim MacDonald's backyard and getting covered by caterpillars that were falling off their trees and running home screaming. But, we also had good times in the clubhouse in Mary Ellen's back yard, and exploring the woods.

Life seemed pretty darn simple. Now, the shows my kids watch are mostly reality-based (18 Kids and Counting, Deliver Me) or insipid Disney shows like "The Suite Life of Zach and Cody: On Deck".  The kids don't get the same kinds of opportunities for outside play. The world is not as safe as we thought it was 20 or 25 years ago and kids can't stay out till the streetlights come on. My kids love to hear stories about my childhood (which wasn't quite as idyllic as this post makes it sound).

I loved my TV shows, and on Friday nights, I would escape to watch my favorite shows, armed with a bowl of Heavenly Hash ice cream with a broken up Kit-Kat on top. (No, not very healthy, I know.)  Shows like Growing Pains, watching the banter between Mike and Boner, seeing important issues covered like drunk driving when Carol's boyfriend died, they all shaped who it was I became.  There were no iPods or handheld DS games. We were lucky if we had video console systems, and I remember being thrilled to go to Anjali's house to play Frogger on her Atari a zillion times. I remember watching "The Breakfast Club" and "Dirty Dancing" on our new VCR. Every Sunday, I would take my battery-powered radio up to the top of my back-yard, swing on the swing-set, and listen to Casey Kasem's "American Top 40".

The untimely death of Koenig (aka "Boner") makes me remember how important I considered that show, and all the pieces of pop culture, while growing up in a white-bread suburb like Burlington.  However, I still hold onto small pieces of it. On my iPod, I have Belinda Carlisle and Bon Jovi-- a hair band and a former Go-Go. What could be more 80's than that?

Finally... a real vacation

The kids and I packed *many* bags of stuff and loaded the mini-van with said bags, movies for the DVD player, snacks, assorted Build-a-Bears and other stuffed animals, the iPod, left the cats in the trusted and good care of our wonderful neighbors, and escaped to the Berkshires for the weekend.  Despite the fact I have lived in Eastern Massachusetts my entire life, I had never spent any real time in the Berkshires and I now know I was missing a lot.

Despite the challenges autism can present, my Boy ended up having a fantastic time and the Girls each had a friend to themselves for 3 days straight.  They were in Heaven.  I so enjoyed spending time with my friend. (Her husband mixed some great adult-drinks after the kids went to sleep every night. He also is an avid outdoorsy-person and tired the kids out playing in the snow). My girlfriend and I hung out, we talked, we outlet-shopped in Lee (loving my new pink Coach bag and keychain, which cost nothing after using my Christmas Visa gift card and my Verizon Fios Visa gift card), ate Mexican food in a hole in the wall place, and admired the signs for the Canyon Ranch and Tanglewood. We also saw breath-takingly gorgeous scenery. Specifically, on the drive home, we elected to take the "long" way, a bunch of country roads to Route 2. Well, when you are that far out West, Route 2 is a country road for a long ways, too :-)

Driving through these quaint small New England towns, seeing ice-covered rocks and currents in the winding rivers which followed the roads, admiring the snow-covered mountains,  the icicles which hung off the sides of the roads, the farms and the animals, going over the bridges, glimpsing at all the cute houses... it was lovely.  It felt like we were  in the middle of Colorado or the Northern White Mountains in NH-- very much in the "middle of nowhere".  I loved every second of it.  Had some weird flashbacks on Route 2 past 91, driving through towns which were eerily familiar, BUT the kids were actually enjoying the scenery.  I produced kids who can like long car trips. Wow.

We don't have the money to go on real vacations. Storyland for a day, or two, have been the biggest treats for my munchkins since 2005.  Besides gas and some groceries, I didn't really *have* to spend money on anything since we were staying with friends.  Their family vacation home was amazing, and had a hot tub to boot. The kids loved that, although you couldn't have paid me $1 million to put a swimsuit on and go in. Sometimes, it's just more relaxing than anything to hang out with friends.  Friendships between the kids were formed and solidified, my friend and mine's girl-bonding time was fun, and we even had a very sweet dog to keep us all company.

Relaxing and getting away from it *all* is a good thing. The only downside is that I couldn't bring my skis since my new Craigslist-procured Thule rack has no way to get attached to my new mini-van without the help of one or two tall adults with experience with this sort of thing.  There is a small place to go skiing there , which would have been fun to ski with at least two of the kids.  It is small, but has quite a few trails, and is relatively inexpensive.

Back to the daily grind... three team meetings with clients this week to prepare for and lots of loads of laundry to do. But, I have great memories from this vacation week (including being put in a VIP suite at Disney on Ice at the Boston Garden, which is about the only perk of autism I have found; a very brief glimpse into how the "other half" live). The most important memory is all the precious time with my family.  I am truly blessed.

Hope your week was as lovely as ours!

A tough life lesson

How do you explain death to a 9 year old?  There have been losses of important people (Lynda and Whitey) in my life. But, while they may have cared about my kids, my children never felt a real connection to them. Their losses were very painful for me, and the kids saw the grief and heard the church-inbred dialogue of "you go to heaven when you die and you become an angel".   Even the many years ago when Whitey's daughter Vickie passed from leukemia, I didn't buy all that propaganda. When it was her father whose coffin I stood over and put a flower on in the cemetery, it didn't make any more sense than it had all the years before.

Our 11 year old friend Bridget was diagnosed with a brain tumor 4 years ago. She is in her final days of her battle. She is at home, receiving hospice care, and not in any pain.

Her family is awesome. We met them through the Shamrock Preschool in Woburn. Bridget's mom and I hit it off right away- it helped we were the only other moms of 4, therefore very strange commodities at the preschool. I *think* all our kids also had the one preschool teacher there I think is fabulous.

Bridget and her little brother became buddies with my kids. We were never  super-close friends with her family, but we did go to the zoo, visit playgrounds, and have playdates together. Julia's other "best" preschool friend, Jenna, was friends with Bridget and the three girls got along beautifully.  I have pictures of Bridget celebrating Julia's birthdays and Julia celebrated at least one of hers, too (making pottery!).

When Andrew was in the midst of getting his first comprehensive neuro-pyschological exam, it was Bridget's mom who was my rock. She worked for the doctor and was a God-send to me at a time when I was still trying to understand why God had "given" Will and I a child with autism. Having a little kid who is as cute as a button, but doesn't really talk or act like other children (I think Andrew was 4?) was not an easy walk at that time especially.  Cheryl was so positive and made me realize other kids liked Andrew just fine, her Bridget among them.

Bridget and her fight has brought our community together in a million different ways. My children knew her, loved wearing their "Bridget's Buddies" plastic (a la Livestrong) bracelets.  I would run into her dad at our local Dunkin Donuts often and get updates from him. We walked, virtually that is, on the Jimmy Fund team named in her honor. Bridget was someone we knew once and continued to pray for and cheer on.

Emily has been taking this hard. She wanted to write a message on the website set up for Bridget and maintained by her mom.  She wrote the sweetest thing. Alongside messages from her former preschool teachers, friends of Bridget's from town and from camp, many other patients and families who deal with pediatric brain tumors, and family, Emily wrote a message in pink because she thought Bridget would like it.

I don't understand why Bridget is dying. I don't understand why there is not a cure for this disease and why children have to suffer. I am struggling with how to talk to my children about all of this. When Bridget does become an angel and is no longer suffering here on Earth, how will E understand that? Nevermind, how I am going to tell J, already so fragile.

Life is so short, the best advice I can give my kids is to be kind and always help others and to try to make amends if you fail.  Certainly, those are words I have tried to live by and the "making amends"  part can be hard. All we can do is live in a way which we can be proud of. I think Bridget's kindness, strength, and joy personify the best here is in humanity and we will miss her very much. And there is no Bible verse which can help me understand any of this.

Update: Bridget earned her "angel wings" early this morning (January 14, 2010).  My thoughts and prayers go out to the Sweeney family, her mom and dad, and her three siblings especially.

Lights, all shiny and sparkly

My kids are the lights of my life. They make me laugh. They drive me a little mad sometimes, but they are the most amazing "little" people in the world and I would do anything for them. These four creatures constantly remind me of what is truly important.

Christmas is just not that important to me.  I just can't take another holiday of people I know, people I have known for years, giving their dad money or stuff for the kids and ignoring their mom's existence.  It came out casually- that dear friends of my family had sent him a Kmart giftcard. I don't think he has ever bothered to ever speak to them ever, yet the pity party continues for poor him. As he and I have discussed, he chose this course and he has to live with the consequences. I could see the look of surprise and perhaps a little jealousy when he saw my new car. Like he has anything to be jealous of.

One of the best life lessons I have learned came from a program I never wanted to go to. The graduation last week was one of the proudest moments I can recall. I not only accomplished something, I was recognized by a lot of people who I never would expected to say something nice about me. Yet they did, lots of people offering compliments.  I was given a beautiful bouquet of flowers. I, whose life has been in utter chaos since a cold, sunny March afternoon 3.5 years ago, was celebrated. People said I had enormous insight to offer other moms, and was providing needed mentoring for at least one of them. All this recognition came from simply being a mother.

There's this great quote that I apply to all relationships in my life.

"Never make someone a priority, when all you are to them is an option."

 

It's pretty clear that in the past I did exactly that and I will never do that again. My most recent entry into the dating world is a perfect example. How I seem to attract single dads with major "baby mama drama" is amusing. I've had what I thought was a happy and healthy relationship, I think I know what that feels like. It's not worth my time or effort to have anything less than that. I said good-bye gently but firmly. I feel great about myself. I kept the big picture in the forefront of my mind, that same big picture which got so clouded three short years ago.

 

We will march on towards Christmas. My kids won't be with me Christmas Eve, a night which has memories I can't erase associated with it that go far beyond years of tableaux appearances (of me and the kids) at our church. It's up to their dad whether or not to bring them to church and celebrate Jesus's birth.  I've been invited by a few friends to spend Christmas Eve with their families, but, while the gesture is very sweet, the absence of my own family makes me want to stay in.  Thanks to some special friends, the children will have a few nice things to open on Christmas (afternoon!) here. We have a cute little tree up (artificial, I'm afraid) and stocking hung from the windows.  The little girls really want the cats to have stockings, I am afraid they will be disappointed.  It's just another day to me, but I hope the kids feel the magic of Christmas.

For now, on this cold, rainy night, I will enjoy a nice drink, the rest of the Sunday paper, 60 Minutes in the background, and watch the lights of the Christmas tree sparkle.

 

 

 

 

Thanksgiving 2009

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Christmas pictures

We used to get formal Christmas card pictures taken at Target and the Picture People every year and they came out great. However, the past two years, we have used pictures from the digital camera.  This year, we couldn't include Miss J, which caused a lot of sadness for me at least, but I managed to get the other kids looking snazzy. With their new haircuts, S and A looked awesome and E, as usual, looks like she may have a future in modeling.

Suffice it to say, this photo is the best one we could get, and it's not great since Andrew looks like a cross between miserable and perplexed. Actually, it's more a "Mom, can we be done yet PLEASE???" kind of look.

I ordered Christmas cards online, along with address labels. I've been wracking my brain trying to figure out, with our extremely limited finances, how to even buy an X-mas tree with a stand, more or less a few presents for each child.  It's not a warm and fuzzy feeling to feel like a charity case, especially knowing in my former (married) life, we never worried about stuff like this.  This Christmas Eve, the kids will be with their dad and I hope they get to be in our church's tableaux (Em was a sheperd last year and she is angling to be an angel this year). 

Christmas music doesn't bother me, in fact I really like it.  I am helping again with the Wish Tree again this year and that always gives me a lot of joy to help so many needy kids. I think it must be programmed into me as being something I do every year. Now that I'll be living back near the Mall, it will be especially easy to help out.

But, I am getting way ahead of myself.....

Best wishes to you and yours for a very Happy Thanksgiving filled with many blessings. 

Our autism journey

My son was diagnosed with PDD-NOS (a form of autism) 7.5 years ago. We were not surprised by the diagnosis, as we knew it was coming from previous appointments with the neurology team at MGH. In fact, I was grateful for it because it allowed Andrew to receive more intensive Early Intervention services. I didn't even bring another adult to the appointment, I had Andrew and his sister Emily with me. I got the prescription with the diagnosis and drove home without feeling much. I then called our EI service coordinator (Lorraine, I love you) and his pediatrician. It was later that night that I broke down. I cried so long and so hard I started getting Braxton-Hicks contractions (I was 30 weeks pregnant). I didn't blame as I am confident vaccines had no role in Andrew's autism. The lack of blaming "someone" or "something" is, to this day, one of the best ways I identified to cope.

The months that followed of intensive EI, Floortime therapy provided by Building Blocks, was a blur. In the middle of all of it, I gave birth to Sarah and Andrew transitioned to our public preschool occurred. When he was tested by the school, he had a few words, some signs, and very little receptive language. He was a hugely sensory kid who responded well to deep squooshes, being wrapped up and swung in a blanket, and a wonderful bear-hug vest. He was also very loving and did make eye contact with adults. Yet, he was very clearly on the spectrum.

Like nearly every other mother of a preschooler with ASD, I quickly became disillusioned by the programming offered by our school district. Knowing, but not accepting, that the mandate for services from a public school under IDEA is very different from EI, I pushed back. I advocated, I complained, I cried, and I wanted to change the rules and law and make them more friendly to families. I was so stuck with being angry and discontent (and in actuality the district didn't have an individualized program for kids who were somewhere on the middle of the spectrum as my son was with nearly all kids who were completely non-verbal), I lost a lot of perspective.

It's all well and good to be able to identify that life is unfair and systems don't always work effectively. After all, I was a savvy systems person. I was excellent at getting needed supports for my family: Commonhealth (state insurance which supplemented the private insurance from my husband's employer), reimbursement for the private insurance through the HIPP program, DMR supports (including flex funding for respite and a behaviorist), and pull-ups delivered to our door paid for by insurance. There was private speech and OT at Healthsouth, trips to the audiologist who had detected some form of hearing loss, switching pediatricians until finding one who specialized in developmental pediatrics. Add on to that constant communication with the school, team meetings every 6 weeks, independent assessments and appointments (like a neuro-pysch and a play therapist), as well as activities in the community such as "My Gym". It was exhausting, but my little boy started to talk.

Yet, I remained angry and frustrated by a system that was not set up as family-friendly. I gained weight. Only in my 20's, my hair started turning gray. I turned to food for comfort, I relied on friends for guidance and support, and autism became my world. With two exceptions, to this day, all my friends are moms of kids with special needs. My own family was tone deaf in many ways about the autism, only concentrating on the gains and happily giving him back when he had a hard time.

What I realize now, having been forced to take a few steps back and now watching my ex make his own poor decisions (he overly trusts and our kid has lost a lot because of it, including home based ABA) that hopefully he will learn from, is that I wasted so much energy and time being angry at the system. I work with many families of kids with autism and can see glimpses of the old me in them. I remember having the I want it "all or nothing", "my way or the highway" mentality for many years. While I don't think the school was always right (in fact, the concessions they did make over the years such as a 1:1 aide and an outplacement for summer services to give Andrew exposure to typically developing kids, do illustrate they realized they might have been wrong), I do now realize how pig-headed and foolish I was. I know I was right about a lot, after all Mass Advocates for Children took Andrew's case and got good results.

I am also keenly aware that one has to maintain a civil relationship with their school district, utilize the mechanisms offered via due process, and not make it personal. I am ashamed of how hard I was on Andrew's preschool PDD teacher and on the integrated preschool teacher who deftly worked with all 4 of my kids. I wasn't trying to be mean or difficult, I was hoping they could make a miracle happen and that my kid would be the 1 in 10 kids diagnosed with PDD who loses the diagnosis by age 6. Until I started working in schools and closely with teachers, I thought they were the "enemy" and only puppets of a sped administration. While they do have to be careful what they say, I forgot these people choose these careers because they love kids and want to help them. Their strategies didn't always work, but I think they truly cared about my kids being successful.

When I talk to clients who are at the stage I was at those many years ago, I try to get them to focus on choosing their battles. Special education law is written to benefit the school district, who has more money than any parent, and their lawyers on retainer. They routinely ignore independent assessments and never give them equal weight of school assessments. Services are often reduced or not offered (where my job comes in) when kids do need them. I get all of that and some districts are much easier to work with than others. If I can share any wisdom beyond telling parents that your instinct about your child allows you to be the best advocate possible, it's that you have to work in the system provided. If you refuse services because they aren't what you wanted, it just will reflect badly on you in the future. Mainly, if you have real concerns, take them to mediation and try to resolve them. Don't spend years/days/months complaining without being proactive.

Having a child with autism is not fair (in context, it's even more unfair to your child who has to live in such an overwhelming world). Do the best you can to advocate (even if it means filling out (5) zillion page forms from the state for services), apply for the programs available which can help your family (PCA hours, respite funds), and make sure to do fun things for yourself (ie: a date night with your hubby, a shopping afternoon with your friends, going to church to worship on Sundays if you can, taking a walk by yourself). The more balanced and happy you are as a mother, the happier your kids will be. Yes, kids with autism will still scream and you won't know why, they will still have meltdowns at the grocery store/park/drop-off/church, they will still need visuals and other communication to support their learning and communication... These things we don't have control over.

What we do have control over is taking care of ourselves and fighting the good fight in a way that we can be proud of. I am very proud of the fact that, with the exception of only 1 school staff member who thankfully no longer works for the school and was nice but hardly effective, each and every home provider who my family has worked with is someone I consider a friend and who, to this day, is supportive and kind and tells me what a good mom I am. (In my case, I was married, but all the autism-related "stuff" fell to me and me alone). I am not criticizing anyone as I've lived all I have written about, but know the journey can be a little smoother when you accept the mediocrity of the system, and work to change it while working side by side with your school and providers.

Andrew as a bear, dressed up to give out candy, Halloween 2009

S's Birthday

Today, my baby turns 7. How time has flown, I still remember like it was yesterday holding her for the first time. I looked into her eyes and fell in love with this tiny person.

It's true that S's siblings didn't seem fazed by her arrival (I recall Julia hiding under the chair in my hospital room). I took out the pictures of our time in the hospital and was struck by how happy Will and I looked. With Em, we were stressed, with Andrew we were utterly exhausted after the delivery. With Julia, we were happy but also very tired (those darned inductions...). With Sarah, we looked happy, well-rested (I was still glassy-eyed from the drugs), and content with this new little person. That night, when my family had gone, my friend Kim came. I was intent upon recovering quickly and knew the best way to start on that track was to get up and walking. Walking down the corridor of the postpartum unit felt like the longest walk ever, but I did it. We had a nice visit. A good way to celebrate the day Sarah came into this world all around.

The many hours feeding her, just the two of us together as the months passed, were so special. She was an easy baby, which was good because it was a difficult time with Andrew just being diagnosed with autism. I would get her up every morning and sing her a silly little song, which always made her giggle and smile.

Sarah is a beautiful little girl who has the most energetic and fun personality. True to form, as the baby of our family, she fights for everything and doesn't want to be left out. She and Emily, though neither will easily admit it, share a very special friendship, too.

Happy Birthday, my "baby" girl. Thank you for coming into our lives and bringing so much joy and laughter to it. I love you very much.

A puppy and a butterfly

The kids had a blast at The Giving Camp today. The brother was too shy for his photo op, however! We had so much fun looking at the GC's website and seeing pics of the kids from other camps in 2006. Even the girls handwriting was fun to see and Andrew had a short haircut and you could actually see his whole face :-)

My kid's school project

An angel just showed up on Heaven's doorstep

Last night, someone who was very dear to me lost her fight with cancer(s).  Lynda was a neighbor for many years.  As well, she was part of my church family and a fellow Deacon. Recently, she insisted upon gifting my daughter with a cat-themed nightgown on her 9/11 birthday, despite the fact she was battling progressive cancer and very, very sick. This picture is of Lynda holding Julia at her baptism party so many years ago. I blogged about Lynda when she and I re-connected this past July.  We had a really special, long heart-to-heart conversation.  (It's cut-and-pasted at the bottom of this post).

Most importantly, Lynda was a friend. She was a friend who brought over a casserole (or three) when babies were born.   She was there when Andrew was diagnosed with autism, taking an especially caring role as she had a nephew who also is autistic.  When, in 2006, crisis came into the lives of good friends and my family (she reminded me just a few weeks ago that I still have her green casserole dish).  So intuitive and smart, she remembered how fragile we all seemed during that spring.  She came to the hospital when my kids was born. (Heck, it was Lynda who took me to the BI for a late-term amniocentisis to determine Andrew's lung maturity).  Lynda was "the" wonderful, non-judgmental friend who threw me a lovely baby shower in her backyard when I was pregnant with J.  At my wedding, her then early-elementary aged daughter danced up a storm at the reception.  She was a true "Angel" to my Andrew, diagnosed with autism at age 2 and in need of a 1:1 aide during Sunday School so I could get a brief respite.

Heaven has welcomed an angel, but we have lost a truly, kind, and compassionate person who symbolized grace to me.  Lynda very much wanted my daughter to come back home, and thought what J most needed was to be with her mother more than anything.  Lynda's own mother was steadfast in her love for her daughter and cared for Lynda over the many years she was sick. My heart goes out to her and to Lynda's two kids, 17 and 22.

Heaven's lucky right now.  Those of us here will miss Lynda so very much.  I loved her and didn't get a chance to say good-bye, but had sent a few emails and left a few messages on her voicemail letting her know I was thinking of her in recent weeks. May God bless her and be of comfort to her family. She was an extraordinary person, an Angel to Andrew in particular.   But, man would she be so uncomfortable hearing that word used to describe her.

Rest in peace, my dear friend.


7/26/08

A week ; a friend

Last night, I spoke to a long-time friend, Lynda, who is very sick with cancer.  She helped throw my baby shower.  I told her how sorry I was that I hadn't called sooner knowing that week after week I'd read of her illness in the church's bulletin and week after week, I did not call.  Strangely, she too apologized for the same thing. She said she felt so badly about what was going on with me, she too just couldn't call. She reminded me that one night, she brought over dinner for two families to share. She told me only now that she sensed such a disaster, that one little one was a mess and crying, and that the tensions between the adults seemed palpable. I sheepishly reminded her how much we all appreciated her casserole that night and that I still had the green dish in my cabinet. We ended our conversation with a few tears and promises to stay in better touch.

What happens when you don't nurture the friendships with the people who you care about?  What happens when you nurture them too much?  For many months, my family extended itself, becoming a family plus 4, taking care of the needs of our (then) friends who were in a crisis of which we had never witnessed before.  In reality, it may have provided the support that was needed for them, but it tore my family apart. It absolutely killed whatever vestige of a marriage I had left at that point (tenuous at best). You want to help those who you care about, who have helped you and cared about you. That's human nature and friendship.  Even in the middle of the crisis, I was taking care of 2 extra kids, plus both of their parents. I was lauded by our church and our pastor for it and hated and resented by my husband for it. What a mess.  Lynda helped a lot; others helped.  It wasn't enough; it was too much for everyone.  The village simply wasn't big enough.

Friendship, having seen it go when I wasn't ready for it to leave, is even more special and sacred because of this.  It's the one bond that shouldn't let men or other intricacies come between it. It's an amazing bond between women which I have yet to see replicated by men.

I saw something interesting on the Today Show. The "expert" said that women should not date men who don't have their own friends. The point being that the men need their own support system and it is unhealthy for them to rely on their new female partner for all support. Truer words have never been spoken.  Lynda said those words, gently as she said everything, to me over and over again.

Advice is good, healing necessary, but there is a profound sense of loss which tears at my heart and soul.  This loss hurt me, it hurt my kids, and their friendships, too. What a strange way for things to play out. And then what a sad, sad way they can just as easily all fall apart.  Thanks to friends like Lynda, any hurdle can be overcome.

Happy Birthday to an 8 year old

We celebrated Emily's 8th birthday today with an awesome party at the local bowling and arcade dive. The kids had a blast, and the adults were happy it was an "all-inclusive party" (no buying paper products, a cake, or anything really, just show up with the kids).

I am taken back to the day she was born. I had gone into the hospital for a routine non-stress test (which Emily royally failed). I was told I would be admitted because, at 32 weeks, she needed at least another week of incubation, and that they were immediately admitting me to the hospital. I had left my other two kids (then 3 and 1) with my mother. My husband was at work. As the day progressed, I talked to friends and told them what the scoop was. One good friend even had some flowers sent to keep me company during the anticipated week-long stay (little did she know I'd be delivering that night; she later sent another bouquet congratulating us on our new little girl). My friend Phoebe was going to be there at the delivery, but things moved too quickly. She came about 10:30 p.m. and kept me company while my husband tended to the baby in the special care nursery. But, I'm getting ahead of myself here.

Finally, around 5:00 p.m., I had a special ultrasound called a bio-physical profile. To pass, you need to score 6/8. Emily got a 1/8. Not good. After the doctor decided that a c-section was in order, my husband arrived and we watched the Australians win some swimming medals in the Sydney (summer) Olympics while a neonatologist came in and told us about what could be wrong with a baby born this early (scary stuff).

At 8:37 p.m., with a lot of worry and what seemed to be a zillion people in the OR, Emily was born screaming at the top of her lungs. She weighed 4 pounds, 4 ounces. She did extremely well for a baby of her gestational age. Thank God she was a girl and that I had had steroid shots to enhance her lung development. When I saw her briefly post-op en route to my room, she had a tube in her nose and an IV in her head.

After a few weeks in the Level 2 NICU (she needed to learn to feed, to grow, and to keep her body temperature up), she came home. (During this time, my birthday came and my good friends took me out to dinner, I think wanting to preserve some normalcy, and my best friend at the time and I then made a late night visit to the hospital).

Em was tiny, and we had two other kids to care for. Having a c-section was a new experience for me; I certainly did not follow the doctor's instructions. It was not practical not to drive or climb stairs. So many people helped us out (this in addition to the dozen who sent or brought flowers, I swear people don't know "what" to do when you have a preemie). Both mom and dad were utterly exhausted and our friends placed bets whether we would "make it" to the new year.

Alas, we did, and we have a beautiful daughter. Happy Birthday my beautiful Emily Elizabeth (and, no, we did not name her after Clifford's friend).

Happy Birthday to an 11 year old

Today, we celebrated J's 11th birthday (it's actually on 9/11) in "cat-themed style". It was really nice that the people here today have cared about J for many years, this party was not someone else's where her presence was an after-thought, where guests didn't bring her so much as a card. Most importantly, it was a family event where her siblings were included. They all love her. Her extended family was invited. But, you know what, today our friends definitely made her forget about others' absences.

We had a room of people who really care and love her, and who have actively supported our family for years. They are the ones who bothered to care when things started getting rocky. They are not fairweather friends or family. They are the real deal; the ones who have never ever let the kids (or me) down. Happy Birthday, my beautiful daughter. It was wonderful to see you smile all day. (And a huge thank you to the many friends from near and far who sent birthday cards).

Happy Birthday my not-so-little man

We had an awesome day celebrating Andrew's 9th Birthday at a pool party. The only thing missing was his big sister, but he managed to have a great time with a small group of friends. He was absolutely beaming, even while in the pool, and was tickled pink a girl from his class came :-) His silly mother, however, forget to bring new batteries for the camera. Thus, there are only 2 pictures from the event to be shared and, blog readers, you see both. Andrew is quite distressed his hair looks short in the picture, he'd like you all to know it is actually getting quite long in the back. And, no, my cake cutting skills have not improved much. Maybe a class is in order.

It's "tax-free holiday weekend" here in Massachusetts. Anyone making a big purchase? I think the only thing that's ever been memorable about this MA phenomenon is the watch that I wear. It's very pretty (two-tone gold and silver) and it still works and is special to me.

S and I continued the tradition I started with E last year. We are reading a Children's Bible, a chapter or two a night. It's particularly rewarding to see that, so far, S recognizes the stories. That says a lot for her church school teachers. We also have a long held tradition of saying prayers before bed every night. It's nice she feels God's presence in her life in these ways.

A week ; a friend

Last night, I spoke to a long-time friend, Lynda, who is very sick with cancer. She, in fact, helped throw my baby shower.  I told her how sorry I was that I hadn't called sooner knowing that week after week I'd read of her illness in the church's bulletin and week after week, I did not call.  Strangely, she too apologized for the same thing. She said she felt so badly about what was going on with me, she too just couldn't call. She reminded me that one night, she brought over dinner for two families to share. She told me only now that she sensed such a disaster, that one little one was a mess and crying, and that the tensions between the adults seemed palpable. I sheepishly reminded her how much we all appreciated her casserole that night and that I still had the green dish in my cabinet. We ended our conversation with a few tears and promises to stay in better touch.

What happens when you don't nurture the friendships with the people who you care about?  What happens when you nurture them too much?  For many months, my family extended itself, becoming a family plus 4, taking care of the needs of our (then) friends who were in a crisis of which we had never witnessed before.  In reality, it may have provided the support that was needed for them, but it tore my family apart. It absolutely killed whatever vestige of a marriage I had left at that point (tenuous at best). You want to help those who you care about, who have helped you and cared about you. That's human nature and friendship.  Even in the middle of the crisis, I was taking care of 2 extra kids, plus both of their parents. I was lauded by our church and our pastor for it and hated and resented by my husband for it. What a mess.  Lynda helped a lot; others helped.  It wasn't enough; it was too much for everyone.  The village simply wasn't big enough.

Friendship, having seen it go when I wasn't ready for it to leave, is even more special and sacred because of this.  It's the one bond that shouldn't let men or other intricacies come between it. It's an amazing bond between women which I have yet to see replicated by men.

I saw something interesting on the Today Show. The "expert" said that women should not date men who don't have their own friends. The point being that the men need their own support system and it is unhealthy for them to rely on their new female partner for all support. Truer words have never been spoken.  Lynda said those words, gently as she said everything, to me over and over again.

Advice is good, healing necessary, but there is a profound sense of loss which tears at my heart and soul.  This loss hurt me, it hurt my kids, and their friendships, too. What a strange way for things to play out. And then what a sad, sad way they can just as easily all fall apart.  Thanks to friends like Lynda, any hurdle can be overcome.