Friday, April 29, 2011

Yes, it actually does take a village to raise a child

Amy Poehler's speech, thanking Time magazine for naming her one of the year's top 100 most influential people, starts out funny and quickly gets serious:

But tonight, I’m genuinely very humbled and honored to be part of this evening, so I would like to take my remaining minute to um … I have thought very hard and long about what has influenced me over the past couple of years, and since I have been at this dinner in 2008, I have given birth to two boys and I’ve left Saturday Night Live and I started my own TV show, and it’s been a crazy couple of years, and I thought who besides Madam Secretary Clinton and Lorne Michaels have influenced me? And it was the women who helped me take care of my children. It is Jackie Johnson from Trinidad and it is Dawa Chodon from Tibet, who come to my house and help me raise my children. And for you working women who are out there tonight who get to do what you get to do because there are wonderful people who help you at home, I would like to take a moment to thank those people, some of whom are watching their children right now, while you’re at this event. Those are people who love your children as much as you do, and who inspire them and influence them and on behalf of every sister and mother and person who stands in your kitchen and helps you love your child, I say thank you and I celebrate you tonight.

I love seeing a successful woman, particularly a celebrity, acknowledging and thanking the people who help her look after her children. More women need to do this. More men need to do this.

(via Crooked House)

Wednesday, April 27, 2011

What is home?

I've been visiting a new church for the past several weeks. Yesterday, I sat down with the pastor and had a "get to know you/this is my faith journey" kind of meeting.  Not only is the church itself of what I would consider liberal, welcoming, Protestant theology, but the pastor is a kind, gentle, non-judgmental man who does a great job listening. He offered some compelling food for thought.

We talked a lot about care-taking,  as it had been integral to my "place" in my old church.  The discussion of having to take care of yourself in order to take care of others was enlightening.  While having nothing to do with Christianity, we talked about how the flight attendants on every flight remind passengers that, in the event of an emergency, you should put your oxygen mask on before you help anyone else.

It always seemed so selfish in my mind to not put others' needs first. I felt that not doing so made me a "bad Christian", and that I was called to help first, take care of myself second. This is clearly what happened in my marriage, throughout my tenure as an ordained Deacon, and in decisions I made first in that role, which then spilled over to my personal choices.

Yesterday, I was reminded that God, who I have struggled with and who my faith has wavered in, doesn't judge.  I was told it's not only ok to be mad at God, it doesn't make me an inadequate Christian.  What I am is an imperfect Christian who tries to do justice, love kindness, and walk humbly with my God. That's the best I, or anyone, can do.

I feel home at this church. This is a church family I want to be a part of, and as the minister reminded me, the church family wants to be part of my village.  I am blessed and for the first time in a very long time, I can say with certainty I am "home", as well as forgiven and loved by my God.

Saturday, April 23, 2011

Happy Birthday, S

We're celebrating Miss S's birthday today!  My "baby" is 9 years old, only one year away from double-digits.

S is a unique, 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 challenges in writing and reading. By far the most imaginative of my kids, she stretches this creativity to make the most funky and neat projects and creations.

I know she hurts sometimes and wishes for her family to be whole.  However, she has a lot of love from me (and from her dad).  There are many special friends in her life who love her.  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, too.

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).  Sharing her birth day with my dear friend that evening in person, and with others on the phone, are all fond memories.   She brings so much love and light into our family's world, I can't imagine my life without her in it.   Happy 9th Birthday, S.

(Cut and pasted from last year's birthday post)

Thursday, April 21, 2011

Just some bowling-- putting autism in its place

Today, Andrew bowled a strike.  It was with bumpers in place and with a candlepin ball, but it made him so very happy. Truthfully,  I have never bowled a strike so I am impressed :-)

Earlier this week, Andrew asked why his big sister refused to forgive him after he apologized to her for invading her privacy.  He is learning what empathy is. At age 11.5, living with autism, he is meeting the social and emotional milestones of a child much younger. And I couldn't be more proud of him.

I remember the day he first said "I love you" back to me like it was yesterday.  He was 5.  I was tucking him into his top bunk bed and said, as I did every day, "I love you Andrew".  His little voice said "I love you Mommy".  It's cliche, I was so happy to hear those three little words from him for the first time, I cried after I left the room. I was both amazed and humbled by the power of his words, after years of speech therapy and the methodical teaching we know works best for children with autism.

As I look at this boy/young man, I feel blessed to be his mom.  I feel in both ways angry at and bad for his autism.  We play the "two steps forward, one step back" game, always have and always will.  Do I love him in a different way than I love my daughters? Truthfully, yes. Do I worry about him and what his future will hold more? Yes.  Am I forever grateful he has three sisters who I trust will always be there to help him reach his goals far into the future when I can no longer care for him? Yes, he may drive them crazy at times, but they are fiercely protective of their brother.

Today, bowling made Andrew happy and he felt successful. Taking it one day at a time is all we can do when the "enemy" (the A word is what Sarah calls it) is so powerful and takes hold at erratic times and makes things so damn hard for him, and for our family.  So, we carry on and celebrate the small victories.  Every night before bed I tell him, "I love you, Andrew".  His response: "I love you, Mom".  That is a gift I hold close to my heart.

Wednesday, April 20, 2011

Another birthday treat...

Sarah had a wonderful birthday treat yesterday, spending the day at Coco Key Water Park in Fitchburg.  She played hard for 8 hours, including climbing the stairs of a 4 story water slides easily a few dozen times.

Today it's off with a friend to the New England Aquarium in Boston.

Tomorrow, a special day with my best friend and her surrogate "aunt".

Being (almost) nine has certainly kept my baby girl busy. How did she get to be nine? She lights up a room when she enters and never fails to put a smile on my face on even the dreariest of days... Happy early birthday- again- Sarah Johanna Collins!

Sunday, April 17, 2011

Uninspired during Holy Week

For the vast majority of my life, the events of Holy Week were especially meaningful.  It solidified my faith and beliefs, it was a time of fellowship and learning (not to mention an amazing Easter morning pancake breakfast) for my children, and Easter itself a time to be with friends who were like family.

This morning, Palm Sunday, I am uninspired.  Yesterday brought a low not seen in a long time. A young man with autism who could not get it together and control himself, his words, or his actions, who brought this mother to the end of my rope. Crying, no sobbing, for my boy who is lost in the autistic world, who I wonder if he will ever come back.  He was so cruel to all three of his sisters, a sad combination of annoying them and screaming at them.  It all breaks my heart to the point of no return.

These three young ladies, the sometimes forgotten siblings of a child with autism, have suffered so much as autism's grip has held our family hostage on more occasions than I can recall.  It's a constant war zone, not knowing what will set him off, or sometimes knowing but not being able to change the outside factors to his liking and acceptance.

I've been thinking a lot about how it feels to be alone.  It's not my kids' job to take care of mom.  But the truth is I am alone in many ways.  All I have ever wanted is to be a good mom, and a good partner/wife. Have I failed in both these endeavors?  It sure feels like it on this rainy, dreary morning.

Sunday, April 10, 2011

A special weekend with a special girl

This whirlwind weekend ended with a very special (and incredibly rare) Mom and Sarah day.  When you have four children, time alone with any of them is precious, but Sarah is probably the one kid who really needs the 1:1 attention, extra love, and hugs.

We started the day with a lovely walk around Horn Pond. I pushed strollers with all my kids in them around the Pond, dozens if not hundreds of times. Sarah and I talked about the memories she had as a toddler and preschooler of the pond: the ducks, the rock that looks like a big chair that I have dozens of pictures of the kids and their friends sitting on throughout the years.  There is a lion sculpture Sarah used to like to climb on.  No longer does she climb it, but she wanted to go see it.  Sadly, the statue of an Indian where the path goes into the woods was stolen a while back, but where it stood is some hilly terrain which Sarah wanted to climb and walk parallel to the paved path.  My friend Carol ran by and said hello there, reminding me of one the the reasons I most love Horn Pond, seeing old friends. There is never a trip, except for the rare early morning one, where I don't run into someone I know and like.

As we approached the halfway point, one of the trails veered off to the right towards the path to the top of Horn Pond Mountain. The kids and I have climbed that hill dozens of times, but there are lots of memories there, not all good, so we managed to keep walking around the Pond, checking out the ducks and swans. (And, come on, who the heck named it Horn Pond Mountain? It's a little hill).

Sarah felt accomplished after we finished our walk.  We decided to take advantage of our small party size and head to Tu Y Yo, our most favorite brunch locale.  We talked, we laughed, and we enjoyed some really yummy food (chilaquiles, sopes, and flautas).  She confided her fears, her hopes, and her dreams, and I shared some of mine as well.

The only bump in the road of the day was that our appointment to get our nails done was a small catastrophe.  No matter what time you book, they are never on time, and today they really weren't good to Sarah (typically, they are great to kids).  The only upside of the experience was running into an old friend from high school (ironically, this was the second time I had seen her in 15 years, both times at this nail salon), and catching up.

When it was time for our time to be over (shared custody can be a bitch), there were lots of tears from my baby girl, about to turn 9 on April 23rd.  In turn, my eyes watered a bit, too.  I can hardly believe it has been nearly a decade since I gave birth to this amazing little girl who is full of spunk and has enough personality to star in a variety show.  I am very blessed to have had this time with her (which came a day after a small, but super-fun birthday party playing laser tag).

I love you, Sarah Johanna.

Saturday, April 9, 2011

Happy Birthday Party S

We had a fabulous, small birthday celebration with two friends from church in honor of S's 9th birthday at Laser Craze. As much fun was had by the adults as the kids and all my daughters had a blast. We are fortunate to have a small group of wonderful friends and seeing Sarah so happy makes my heart smile.

S struggles mightily with self-confidence and seeing her so alive was enough to remind me that all the special times and events she gets to be a part of help her self-esteem. School is not going well for her, she is just a sponge for attention.

Having Andrew not there was a relief, as much as it breaks my heart a little to know all the kids can't
celebrate together.  (He had a great time at the zoo.)

All in all, what a lovely day!

Monday, April 4, 2011

Pass it on

In the midst of whatever life is bringing my way, I have to admit that one of the things I enjoy most about my job is helping parents hone their advocacy skills, with a long-term goal for some clients to no longer need an advocate.  I worked with a wonderful family with a preschool aged child with autism, and other challenges, for many months.  I helped guide them through the initial IEP process, and now they are flying on their own and doing a fantastic job.  I know we will keep in touch and I look forward to hearing of their successes.  They sent me a lovely thank you note, along with a delicious assortment of chocolate covered strawberries.  Such a nice surprise for what they viewed as a job well done.

Another client tonight stood up not only for her child, and family, but also for me, in a school district which is routinely unfair to parents of children on IEP's.  If I am to understand it correctly, she was the one person who told the Superintendent that she doesn't want a liar as the new special education director. Whoa- strong words but in my opinion, ones that were appropriate to be say.  I have seen families put through so much pain in this one town, all to what end. The district saving a few bucks? Well, trust is eroded and relationships sometimes irreparably harmed when some people lie, the right people don't show up for meetings, staff raises their voices to parents, mysterious policies are quoted which don't take individual needs into account,  or speciality service providers are so split between buildings, kids go without therapy more than a few times.

This mom didn't need me to teach her how to advocate. But it touched me to know her comments were meant to defend me, too, in my professional capacity.  It's an awful thing to be lied to-- the sped administrators, as a group, told me I was the only advocate who was attending meetings in this district.  Not that I believed that for a nanosecond, but now I can reliably name a dozen advocates, plus attorneys, who routinely attend IEP meetings, mediations, and represent clients in due process proceedings (ie: when you file for hearing over IEP services, it's akin to suing the district) there.  People don't want to have to pay advocates or lawyers- they do it mostly when they feel backed into a corner or that no one is listening to them.  In a perfect world, I'd be working in a classroom because no one would need an advocate.

Sometimes, the joy my work gives me is enough to overwhelm all the crappy stuff that seems to be landing squarely on my doorstep.  My kids saw me happy tonight, happy for my client, happy to see someone with the guts to tell it how it is, with the intent to help children with special needs thrive and access all the things their non-disabled peers can not.