Tuesday, August 31, 2010

The great hunt

If you have a child with special learning needs who has needed a new placement, you know that advocating for the right school can give well-meaning parents ulcers. Mom and dad who just want the best for their kids are drawn into a confusing and time-consuming process.  It's a tiring process for anyone, and somehow my special education background is not making it any easier for me.  I can go to bat for a client and help them obtain an incredible program (like I did yesterday in Medford), write IEP rejection letters which appropriately quote the law and make salient arguments for other people's kids. Yet, for mine, the words don't come so easily.  Picture me tongue-tied and quiet- not quite the typical picture.  

The needs are not clear-cut to either my mom or advocate brain, although thank God for my advocate friends who are providing a lot of support.  My professional friends are offering their services knowing full well I can't afford $3K for an assessment that Andrew really needs.  We do this for each other because to work in this field, you have to be compassionate and giving.  That's why the work suits me so well, I like helping people, and it's just a bonus to get paid for it.   I do more probono or reduced rate work than I should, but I don't say no to helping people.

Autism is such a loaded word.  Every child is unique, and there are many schools and programs out there which  claim to cater to autism. But, which one is the best fit for my child's autism? The child who, during an interview today, said he isn't sure if he likes himself, he's not sure if things will work out  for him, he wishes he has more friends, and that he feels like crying most days.  It's heart-breaking to hear how different he feels, when I worked so hard when he was younger to try to make him fit in, have friends, and be successful in school.  Yet, autism is so cruel, and he has lost so many of those previously learned, and I thought somewhat solid, skills.

I don't feel like this is a fight with the school, there's no clearly drawn corners.  I have a fair amount of trust that our district will really try to meet my son where he is.  There is some perhaps grudging respect from both sides which will only serve to benefit my kid. Now that, my fellow autism parents, is an enviable position to be in.  I don't have a fight in me because I have faith he will get what he needs.  Hopefully, the district is willing to collaborate and do the right thing. I just don't think either they or I know quite what that is yet...

Sunday, August 29, 2010

No answers

There are no answers to what has been plaguing my son. Just a simple "talk to the doctor about the med" and advice to cut the dose in half for now. No explanation other than "these kinds of meds" can have weird and detrimental side effects. Having him on these types of medication to begin with makes my head spin.

I am so proud of my son. Never would I have imagined that he could withstand an EEG, fully awake and aware. Yet he did, with flying colors. Never did I think he would do a lot of what he's been able to do recently.  It's amazing, and a gift, that he can tell us what hurts, or what feels "off".  The things that feel "off" make me really angry.

This all just leads me to really hate autism. What a cruel disease. This young man, who has so much good in front of him, is being held captive by a developmental disorder that is so unforgiving.  Tonight, at Trader Joe's, Andrew wanted to buy me flowers. He calls me his "pretty, beautiful, and gorgeous" mom (probably got the adjectives off a  TV show). He talked about the foods we would buy and cook this week. He hugged and kissed his big sister.  He spoke of how the muscles in his face hurt, too. Just now, he awoke upset because he said his face was in pain. These medications, which are supposed to help kids with autism and related issues, just seem to cause more complications.

I love Andrew's quirks- his love for bears and calendars and numbers.  But, I hate this disorder which has robbed him of being a normal kid. He doesn't have friends.  We didn't have a birthday party for him because he was in the hospital, but truly, no one would have come anyways.  My dear friends love him because he is part of me, but he's not some "Temple Grandin wanna-be". He's a little boy who is trapped by his autism and it makes me angry.  He has so much potential. I just want to see it unlocked.

The feelings too shall pass and tomorrow we'll start finding the right school for him. Right now, though, it feels lonely and sad to a  mom who just wants the best for her son.  I know my autism-world friends may not understand, but where is the key out of this prison? Autism sucks. The quirks were maybe cute when he was little, but he's not anymore and is physically already more a man than a boy.  I write this while watching the Temple Grandin movie win lots of Emmys. I hope and dream that my son will too have a decent job, be able to make a living, and have others respect him.  Mostly, I want my little boy to be happy.

Tuesday, August 24, 2010

Do you believe in angels?

My son lays peacefully sleeping next to me as I write this. Do you remember the moments, soon after you've brought your newborn home from the hospital, when you just watch him sleep? When you are completely in awe of the fact this tiny person is not only part of you, but your responsibility for the next 18 years?  I used to stare at my babies while they slept, usually in my arms, and think of all the opportunities they would have and just how beautiful they were.

That's kind of how I feel about my little guy right now.  I am in awe of who he is, who he will become, and cognizant of the paths he has taken before.  I sit here, next to him and a cadre of his beloved stuffed bears, and make mental lists of all the tasks on the Andrew "to do" list.  He needs a school, a home program, a dentist, and, tomorrow, a haircut.  Thanks to the crazy world of autism, we're calling it a "snip" so as not to bring the anxiety that haircuts usually bring out.

For the past few years, I had a lot of time to think about who I was, not Andrew's mom, just who Laurel was and who I wanted to be.  I thought perhaps that I deserved some sort of adult happiness that apparently comes along with living a well-settled and happy life as an adult parent, more or less one of four amazing children.  Other people (married and divorced friends, alike) I know seem to have this...  friends, faiths, their own activities which kept them happy apart from parenthood.  Yet, I wasn't one of them. I thought I was for a while, balancing my family with dating, creating a bubble, and not seeing what was right in front of me.  

Therefore, I've determined that I'm just not going to be one of "those people" who can have it all. And that's ok.  I've been married, been in love, done many of the things on my "to-do" list, have amazing friends, and am slowly building up a faith in something (maybe not God) greater than us.  If there was a God, the one I believed in so steadfastly for the first 3 decades of my life, the wonderful people in my life who have passed on would still be here, my family would not have been torn apart, and I never would have made a fateful decision sometime in early May years ago to follow my heart and not my head.  I don't want it all anymore. I just want to be a mom and forget any other aspirations of life- juggling that may once of been in my mind.  I don't think everyone can have it all.

What I do think exists are guardian angels.  There has got to be someone up there, wherever *there* is, who is guiding me, who has done so with care, especially in recent months.  It's a bit mind-boggling to be in the position I'm now in.  It was not a gift, though-  I earned it.  The path ahead is going to be hard.  It's not like autism was supposed to be easy, and maybe I deluded myself for years to think my child was so mildly affected he was going to do all the things "normal" kids do, with some quirks popping up along the way.  Alas, the path has some roadblocks strategically placed in the middle of it. But, there is nothing that we can't overcome, with grace and peace guiding decisions.  There will be days and moments I know will not be fun- the times autism will dwarf any feelings of normalcy. We'll get through them.

I think of my dear friend Lynda, up in Heaven where I am certain she is, holding Andrew in her arms the day he got baptized. I have pictures of her with all the kids going as far back as when my oldest with in-utero, along with the memories of the love she showed to me and my family. Even when Lynda was very sick, she made the effort to gift a well-loved cat-themed birthday treat to my daughter, because that's the kind of person she was.  I think she's looking down on Andrew, and me, and and protecting him and guiding me as I nurture and love him.  In reality, she is one of the people who taught me how to do these things, and I hope I will make her very proud.

Saturday, August 14, 2010

A letter to my son

Dear Andrew,

Today is your 11th birthday. (For the record, it's sunny and 75 degrees out.)  I think you are the bravest and hardest working boy in the world.  Your autism holds you back sometimes, but it's also brought so many fun and wonderful things to our lives. Some of your interests aka obsessions have included: the most amazing drawings of houses a preschooler can make, home-made calendars, Presidents, Blues Clues, Weather forecasts and, of course, Build a Bears.  You have an amazing gift: memorization.  You can tell someone  born on April 4, 1967, what day of the week that was without blinking.  Pretty neat, indeed.

Some of the things that make me smile when thinking about you include: the Buzz Lightyear tent with a bean bag in it to sleep on, stuffed animal forts, you saying "I love you" back to me for the first time when you were 5, the purple tutu, and many tender and fun moments with Emily, Sarah & Julia, too.  Lots of squishy hugs, body socks, brushes, lotion, and your beloved  bear hug vest have all brought you joy.

I know there is a lot you can't do now, and maybe won't be able to do. Some are even things you used to be able to do.  Have friends, going to a regular school, or your prom, or college. But, there is so much I know you can do and will do.  Part of me wants to scream, "Screw autism".  It doesn't define you  anymore today than on the cold February morning the neurologist at Mass General officially gave you the diagnosis. I am very grateful  to the many wonderful people (the list of Andrew's "people" throughout the years would go on for pages), who have helped you along the way.  Your sisters love you, despite the sometimes unflattering and unkind behaviors.  Our friends love you and accept you for the quirky kid you are.  Your dad and  I love you to pieces.

Of course, I wish you were home with us to celebrate.  You will be soon.  I know how much you want to be 11, as you told us for months how awful 10 was. You are a very perceptive kid.   Emily and I will bring a chocolate-chocolate birthday cake to the hospital and tell you how loved you are and how happy we are to celebrate your birthday.  The question is: will you hear it?  I hope so.

Love always,

Chocolate cake with chocolate frosting and his best friend make a fabulous birthday celebration!

Wednesday, August 11, 2010

Finding some grace

The IEP meeting has come and gone. Many a conversation with people who are important to my family have been had. A fabulous visit with my daughter that included Mexican food and Chilly Cow ice cream was accomplished. All which leaves my head spinning in some ways, but also leaves me with a sense of enormous peace.  I was told today by someone who is important that they believe in second chances.  I will hold onto that as I live my life and take care of my family.  The comment put tears in my eyes. I'm a realist, I own what I need to, but I've come to peace with some other things. I may never be able to come to peace with others, much to my regret.

I might want to start re-building that relationship with God right about now because I think I will be asking Her for grace and guidance over the next few weeks. God doesn't hold grudges, and She doesn't consider you un-Christian and worthless if you don't go to church regularly every week.  It's about time I start figuring out how to re-build a spiritual presence in my life.

Sunday, August 8, 2010

A weekend in the Berkshires

I started writing this while sitting on the porch watching the kids play badminton in the vast backyard of our friends' home in Western Massachusetts.  It's far too easy to forget that the Commonwealth stretches beyond Worcester.  We've now visited the Berkshires for two very fun and relaxing weekends, once in the winter during the kids' school break, where there was lots of playing in the snow, and now in the summer.  It's beautiful to be in the foothills of the mountains, with swimming and outdoor play at the door.

Yesterday, we went to Mount Greylock, the highest peak in the state.  We hiked with the kids, collecting blueberries for pancakes and bugs for our little friend the insect-collector.  The top of Mt. Greylock features a tower built in the 1930's as a memorial- very neat.  The day was clear and the views were gorgeous- we could see the Green Mountains to the North and Wachusett to the East.  It was not too hot and the kids are finally old enough to do some exploring further than a hands length away from me.  Seeing their independence makes me so proud of them.

On our hike, we also came across the wreckage of a small plane. The signage notes this 2 engine Cessna went down during a routine flight from Manhattan to Albany to deliver newspapers.  The crash happened in August and the wreckage was not discovered until December, by hunters.  It was an interesting piece of history to come across during what was a leisurely hike for 4 kids and 2 adults.

The children obtained Passports issued by the DCR, where each landmark offers a stamp.  We have lots of sight-seeing and traveling to do to fill the books with stamps. Some venues are close to home (ie: the Middlesex Fells), but many are scattered in parts of the state we haven't traveled ever or recently.

One of the nicest parts of this weekend was the cool weather we had last night... I love the feel of sleeping with an open window and a heavy blanket on top of me. If only I could lose my reliance on white noise to sleep (it was a habit I picked up when I got married and it never left).  Seeing my youngest daughters with friends, so happy, makes my heart smile indeed.  The fresh food from the garden (think tomatoes, mozzarella and fresh basil or homemade pasta sauce and meatballs--- yum).

In the same vein, I really miss my little boy.  It's all a balancing act, I suppose.  A break from autism that was not wanted at least gave the siblings a few days to make some great memories.

Moments like these are all too rare, taking time to sit, breathe in the fresh air, and just be, enjoying time with dear friends and family.  On the way home, we laughed so hard, singing very loud and off-key to all variety of 80's music (anyone for the Eurthymics, Wilson Philips, or "Play this Funky Music"?). No one can dance while seated quite as creatively as my youngest.  My girls have colored, clip-on hair extensions in, are tanned and happy, and their mom is happy and exhausted and feeling very grateful indeed.

Wednesday, August 4, 2010

in slow motion

I am so blessed. I have good friends, kids who I love to pieces, a job where I get to help kids with autism and special needs, a truce with God if not a bond, and an outlook on life filled with hope.

Then a day like today happens and I am painfully reminded of the fact there are things in my life beyond my control. I feel like I have been watching a trainwreck happen in slow motion, possibly for three years.  Or maybe it's the past two weeks which has been the worst to watch. My family is being torn apart- again- and all I can do is sit back and watch.  It's reminiscent of another train wreck. This time in a bedroom where a family was ripped apart by a man covering his wife's face with a pillow while squeezing her neck with his hands while their children watched.

There is always another option when one is overwhelmed.  It's about the choices we make. The support system we cement in place. And sometimes we don't always choose correctly. I'm reminded of that every day. Three years ago, I chose someone who I thought loved me, who I did love with all my heart, who my children loved.  He left me and hurt my heart in a way I didn't deserve. Glimmers of a burnt orange polo shirt or a rock by a lake still haunt me. And because I chose him, I lost so much else.

Today, I am choosing to open my heart to the possibility that grace happens.  I am strong enough and wise enough to do whatever is needed to help clean up the train wreck, even if I didn't cause it.  The passengers don't care who is at fault, they just deserve to be loved and hugged.

Tuesday, August 3, 2010

things which make my heart smile

1.  my kids laughter and smiles.
2.  seeing advances made in the treatment of autism.  hoping that these things will help other families to not go through what we have with our little boy.  i am proud of the small things i have been able to contribute to this: captain-ing "andrew's team" for autism speaks/naar, raising over $35,000 for autism research. also, testifying at the state house on behalf of a bill which ensured all the needs of children with autism would be addressed by a child's school-based iep team.
3. the beauty of both a sunrise and a sunset. knowing someday i will share those with someone i love again.
4. the sound of my daughter, who struggles mightily with reading and writing, reading me her bedtime story.
5. the sound of my Em, plotting with her friends and just being a 9 year old, and not her brother's keeper.
6. A talking to his bears or saying "i love you mommy". these moments are all too rare, nowadays.
7. J talking about normal things kids worry about when they are about to be teens, like boys. she is such a beautiful young woman.
 8. any conversation with my kids' dad which is peaceful and well-reasoned. it hasn't always been like this and the opportunities are appreciated.
9. hearing from my doctor today "do you still have your gallbladder" and being totally calm.  if i need it removed  to make the sharp, searing pain in my chest go away, so be it. not a big deal.
10.  losing another 10 pounds on the scale- bringing a grand total of weight loss to 34 pounds since january.
11.  really meaning it when i say i am doing well.
12. a well-mixed margarita and a good friend, on my back porch, like tonight...
13. a purring cat who knows where her litter box is.
14. looking through photo albums at so many memories of my family and friends.
15. knowing the future holds only positive and good things.
16. friends who don't sugarcoat things, make me laugh, and are my chosen family.