~Thich Nhat Hanh
30 Dec 2011 Leave a comment
27 Dec 2011 Leave a comment
Happy Birthday Mom Mom!
“Beauty is a heart that generates love and a mind that is open.”
~Thich Nhat Hanh
Today is my mother’s 67th birthday. Happy Birthday Mom! My apologies for plastering your age all over the internet. But the thing is, I think 67 is pretty darn young. Be proud of it, you are beautiful.
This morning as I trekked to the train station in a foot of snow, the wind rushing through the trees sounded just like the ocean. Each step forward, my boots sank into slushy snow and my ears heard another wave crash onto the beach as “ocean spray” stung my face. It seemed fitting considering we had all spent Christmas together at my mother’s house at the Jersey shore. Midday on Christmas day we took a drive along the boardwalk and watched the ocean. My daughter and I played a game of “which do you like better?” and concluded snow and sand are equal in her book. …..
God is always present.
Love never dies.
No matter what happens in relationships, the connections we feel & the memories we have are ours to keep forever.
Cats are companions, and they are not as aloof as dog-lovers would have you believe.
There’s a way to dice onions into perfectly square pieces & this is how they should be cut for Grandpa’s turkey stuffing recipe.
- If you love it, buy it– it will work. Trust that the colors & patterns you love will work together as long as you are following your instincts & the finished creation makes you smile.
- Scents carry memories. Cinnamon candles & Obsession perfume bring you back to me, Mom.
- Everything has its place, and you can always make room for the important things you want to keep.
- If it makes you feel better to be a little obsessive about keeping track of things, go ahead & do it, no one’s gonna mind.
- Most everything can go in the dishwasher.
- People who don’t like to sit on the porch & enjoy the weather with a cup of tea or a glass of wine just haven’t done it enough to really appreciate this simple pleasure. Try Tension Tamer tea or Woodbridge Merlot.
- Take every opportunity to travel the world & meet new people!
- Take lots of pictures, keep your notes about trips– your friends will appreciate these reminders of happy times.
- Laugh often.
- Love much.
- There is a plan for every one of us. Trust.
- Be respectful of your neighbors.
- A couch in the kitchen is the best place for an afternoon nap.
- Give people the benefit of the doubt.
- Women are just as capable as men. If someone thinks otherwise, prove them wrong.
- No matter what you remembered or forgot to buy to *cook-decorate-fix-or-update* a *meal-home-thing-or-outfit* you can always improvise and make something beautiful with what you already have.
- Keep a spare key just in case.
- Take a deep breath when people drive you nuts, and try your best to hear where they are coming from. It doesn’t mean they are right, but it will make you feel better.
- There’s always a Plan B. Trust that truth, and don’t panic.
- Be proud of your family traditions & the good things about your own culture & background– celebrating diversity means celebrating *everybody*
- If you have hard day or you get stuck in a bad habit, destructive pattern or depression, forgive yourself & start over.
- It’s okay to use cuteness to your advantage. A sweet smile goes a long way.
- You will remember everything that is important. It will be okay.
24 Dec 2011 2 Comments
People have been telling me lately that I should write to you. It feels kind of silly to me. I talk to you all the time, just as I’ve always done. I cry to you in my car when I am upset. I whisper questions to you when no one else is around. I scream at you sometimes because I am angry you left me and sad that you couldn’t beat cancer. I look at your picture on my fireplace and tell you about my day.
Sometimes, as I’m going about my evening routine, thinking something happy, I smile at your picture– eternally smiling back at me– and I creep up close and secretly share my thought. Just as I’ve always done.
“Mom, did you see what I found for Hannie for Christmas? I’m so excited, she’s gonna love it!” …
Of course, I don’t tell anyone else all this. Because even though I’m sure everyone who has ever lost a parent or someone close to them at some point talks out loud to their departed loved one, I still worry that someone would raise an eyebrow and judge me for “crazy” behavior.
(Did I just hear you laugh when I said that?)
Anyway, Mom, I’m writing this silly letter early in the morning on Christmas Eve. Aubrey is still asleep upstairs, and so are her dogs– two little chihuahuas. I know you’re a cat person, but you’d love them, Ma. One of them is only three pounds and she thinks she’s a cat, I swear.
… So I’m here in the living room with the lit-up Christmas tree. I took the real-looking fake one you and Dad bought and decorated it with Grandpa & Grandma’s old ornaments and whatever I could find from last year that didn’t get broken in the “ornament smashing incident” of 2010. <Sigh> The tree looks as pretty as yours did last year. And I made a star out of cardboard and tin foil like you and Chris did years ago. Aubrey was so impressed with my creativity that I had to sheepishly admit I had stolen the idea from you. Aren’t you proud I actually gave you credit?
(You just narrowed your eyes at me, didn’t you?)
We have tons of presents under the tree. Big stuff, little stuff, wrapped all different kinds of ways. I was remembering last night how you used to wrap the presents all differently with fancy ribbons and patterns. I tried for some variety, but my stack of gifts doesn’t come close to how beautiful yours used to look. I appreciated that, you know. I don’t think I ever told you. … one of a thousand things I have left to tell you…
You died too soon, Ma.
Soooo… anyhow… we’re going to visit Alex today and hang out and maybe do a local day trip or a drive. Then tonight we go to Aubrey’s parents’ house where her Dad will play Santa for the kids. Then Christmas morning Dan will bring Alex here and we will all have brunch and open presents before Dan and Alex go to see Dan’s family. …
I remember we were all together at your house last year. I remember what you cooked, I remember how the house looked and smelled and felt. … I had a moment of panic last week and I broke down sobbing to Aubrey in my kitchen because I was afraid I couldn’t remember everything. You said to me the last time it was just you and me together in your house that I would remember everything you taught me and all you said, and that it would be okay, that I would have it all inside me.
… I miss you so much, Mom…
I get afraid that the memories, the lessons, the important things will slip away from me, will fade from my mind. But I did manage to find the ornaments and set up the tree and put some pieces of Christmas back together this year. That gives me hope that somehow it’s all still here. Somewhere.
You made this holiday special for our family every year. Christmas was yours (and Grandpa’s before that) and it was always wonderful even if plans got changed or there was an argument or regular family life somehow threw a wrench into things. It was wonderful because of your tin foil stars and all the little things you did. You seemed calm in the busy-ness of Christmas, I think, because it brought you peace and you actually remembered to remember what it’s supposed to be about.
I’m going to try to make it good for the kids this year. And I’m leaving your picture right where it is, so you can watch it all and I can shoot you a secret glance once in a while. I’ll take a leap of faith and presume I’ll feel okay about it all in the end.
… And if you want to send me a sign, or leave me a message, or something like that… well, that would be good too. There’s a new bluebird ornament on the tree for you, right near the star.
I love you, Mom. Merry Christmas.
21 Dec 2011 8 Comments
Well, here we are folks. December has been an eventful month. When Alex was diagnosed with autism several years ago, I discovered a whole new world that was bigger than the “typical” world where I had expected our family would live. A few years into “autism life,” when I would meet with moms of newly diagnosed kiddos, I often used this analogy while chatting together in my kitchen over a cup of tea:
A baby is born and there are all these expectations we have. It’s like everyone is crowded into the kitchen, oohing and ahhing over the new addition, and happily chattering about how wonderful it is to be right here in the kitchen. No one wants to step outside of the kitchen for some odd reason because they firmly believe *everyone* is living right in here.
But if you think about it, deep down everybody knows there is a whole house surrounding that kitchen. It’s just that new parents are afraid to step outside of it. No one really does it on their own, until someone else pushes them out the door into the dining room. And once that happens, once we get pushed through the door, we discover a whole house– essentially a whole new world– outside that comfortable kitchen.
And it feels better to have these other rooms to live in. It’s more comfortable than being crowded into the kitchen with everyone else. But there’s no way to explain that to someone who’s still living in the kitchen because they feel warm & comfortable & safe in there. Someday something will happen in their lives to make them leave that comfortable place and explore their own house, their particular life circumstances. And then they too will discover the whole world outside the kitchen of which they are already a part.
My new friends, and the people who looked to me for advice since I was just a bit farther along on my autism journey than they were, often told me they found that analogy comforting. Well, guess what folks? I’ve got something new to report:
Not only are most people not living in the kitchen, not only is there a whole comfortable house we families with special needs kids have to inhabit– but there are *entire villages* of people, whole communities beyond our homes and what is most familiar!
For the last few years, my family has lived essentially in crisis of one sort or another. We always managed to find the next service, the next step, the new teacher, the better intervention. But at some point, I began to feel sort of lost and my faith wavered. My son’s autism journey escalated to a crisis point where I couldn’t clearly see the next steps. And I got scared and felt alone.
On the other side of that, I recently discovered that what I really needed to do to re-frame our current family reality was simply to go back to the kitchen analogy. I had stepped outside that comfortable room years ago, but this month I walked out of the whole big house. And what I found was a village community safer, kinder and more loving than I could have imagined.
I share my experience with you here in the hopes that if you or someone you love ever needs to leave all that is familiar behind and take a similar leap of faith, you will find comfort knowing others have relocated, re-established themselves & their families, and have found hope in unexpected circumstances.
Day 1: I drive to the clinic to meet Alex’s Dad and transport Alex to his new living place. I feel tears well up as my car automatically navigates to the hospital I’ve visited nearly every day for 6 weeks. I think:
“I hope the next place is good.”
I wonder if we’ve made the right decision. Logically, I know it is the best course of action. I try to keep my emotions in check, but as I pull into the hospital parking lot, I start to sob. I park, grab my phone, and begin calling my “autism network” one by one. No one answers until I reach my sister-in-law, Adrienne.
“Am I a good mom?” I ask, my voice shaking. “I mean, I know I’m a good mother to Hannah, but I don’t know how to do this thing with Alex. I need to know– really truly– am I a good mom for Alex? Am I doing the right thing? This is so hard…”
Without hesitation, Adrienne– who is a supervisor for child protective services two states away and who has seen every family situation imaginable– replies:
“You are the best mother for Alex. You are making the ultimate sacrifice and so is he. You are giving up control to someone else so that Alex can truly get what he needs. It’s not something you want to do, it’s the hardest thing a parent can go through– to let go of your child, to let go of the dream of wanting him at home– but this is the best way to get him the things he needs that will help him. That makes you the best mother. And stronger than you know.”
I hang up the phone and take a breath. A voicemail has come in from Elsie, another mom on a similar journey:
“Alex has a higher power and this is part of his journey. You have dignity & grace to be his Mom. Think of Louise Hay’s message– she wants you to transfer love and healing to him, and that’s what you’re gonna carry: love and healing. Just pass that onto him, because that’s what he needs from his Mom right now. And you have that from the universe because whatever you put out is what you’re gonna get back. You put out the love, you’re gonna get love back. And I love you, I’m here for you. I’m sending you love, healing, warmth, serenity and peace.”
Another breath, I’m as ready as I’ll be. I meet Alex and Daddy. We drive in separate cars to the residential treatment facility. Alex rides with his Dad. Once at the facility, we’re escorted into a small conference room for the official intake. As inevitably happens, Alex wants to roam and Dad goes with him to help him explore and acclimate. I’m left alone with the very sweet social worker, nurse, and various other professionals who drop in to make introductions.
Everyone is nice, they smile and they are patient. They answer my questions. They take the piles of paperwork I’ve collected. They copy insurance cards. They ask many questions and seem pleased to get the information they need. I think:
“This is my baby! I want to tell you everything! He is my life, my heart is breaking, please, please, please hear everything!”
But I try not to talk too much and to only answer what they ask as concisely as I can. I try to trust the process, and to not cry. I fear that if all the intense emotions I’m feeling come flying out, I’ll lessen my credibility somehow and when I really need them to listen, they may not hear what’s important.
Some of the questions are hard:
“If Alex is ever in a situation where he is touched inappropriately, would he tell someone? Of course, we take every precaution to keep all of the residents safe, but this is important information for us to know in case one of the boys may unintentionally cross a boundary.”
I talk about Alex’s expressive language, what he is capable of telling us and the needs he usually does or doesn’t express. I tell the nurse Alex does not usually tell us when he is hurt or hungry, but he will answer direct questions. To the professionals I appear to be coping well. Inside my head, there is a mother on her knees crying and pleading loudly:
“Please, please, please take care of my baby!
…my baby, protect my baby boy…”
Intake finishes. We go to Alex’s new “home” and see his room. As we walk in, for the first time I meet kids exactly like him. Almost like the boys at Alex’s school, but with one difference– all of these energetic, enthusiastic guys are at the same place for essentially the same reason: They have needs that could not be met at home.
Alex’s roommate Anthony is talkative & perceptive like Alex. Another boy David melts my heart with blue eyes & a big hug. Still another, Luke, bounces by telling a staff member about his family. We play with Alex on the playground, we meet the staff members on the unit. I start to feel okay, I think maybe this situation will become okay …
Each person I meet really “gets” these kids.
Day 3: Aubrey, Hannah and I visit Alex for the first time. We hang out together in a special family visit room. Alex is his usual distracted self, I feel a little anxious. Hannah sees a small bouncy ball I included with Alex’s clothes and toys. She cries that it is hers and she wants it now! I try to be calm and understanding, but I am less than patient with her. I think to myself she has rooms full of toys, Alex is living away from home among strangers, let him have the ball for goodness sake! But I know why she protests, and how much she has given up over the years. I explain the importance of sharing some things, and then I keep quiet. Aubrey helps Hannah feel okay.
Day 5: I visit Alex on the evening of his birthday. He is wearing comfy pajamas, his favorite movie “Alvin & the Chipmunks” is playing on the TV in the common room outside his bedroom door. There is a Christmas tree with colored twinkle lights sparkling. I am amazed at how calm I feel. I tell the Treatment Manager who runs the house how reassuring this feeling is. I am grateful.
Day 8: We visit Alex at his classroom and then go with the class to the gym building for their annual Holiday Bazaar. I learn that the facility is active and involved in the community in many different ways and I realize that working together they are able to provide amazing experiences for the kids there, in ways I had never imagined. Their work not only benefits the kids, but benefits many families around them who are living in the land of the typical. My kid is part of a community that educates, empowers & makes a difference. More gratitude.
Day 9: We celebrate Alex’s 11th birthday at his new living place with Grandma and Big Pop. We decorate the play room. Alex is happy to be hosting a party for his new friends. The best part for me is being able to share pizza and cake with all of the kids and staff. I am so grateful Alex is in such a supportive environment.
Day 15: We attend the annual Holiday Show. Alex stands on stage, he participates. My eyes well up as each class sings & performs. No matter what their challenges, each individual kid’s strengths are highlighted. I sit with other mothers who share the same scars as mine, who have the same stories, who are walking just a little bit ahead on the autism journey. They say to me:
“Only two weeks? You’re doing really well!”
They offer their phone numbers, they give hugs as freely as their amazing kids whose smiles can capture hearts as easily as my Alex’s grins. I don’t even know how to tell these parents how much this connection with them means to me. But I suspect they already know. I drive home cautiously optimistic and begin to envision a new year….
… to be continued…
17 Dec 2011 1 Comment
Today I am grateful for:
Enthusiastic people. The kind of folks who see something happy & smile, who celebrate the big & small triumphs of others, who derive as much– if not more– joy from helping other people win than from winning themselves. Kudos to all of you!
Gluten-free pizza from our local pizza parlor. Yummy thin crust, tomato-basil with super fresh mozzarella… mmmm… ’nuff said.
Soy mochas. My new favorite. Served, as always, with a smile by my favorite coffee shop buddies. I think I mention coffee often on here. … But then again, I’m not sure… Could you go check the archives for me please? 😉
A day where nothing particularly extraordinary happens. Just a basic get through work, get through life, one-thing-at-a-time kinda day. How grateful I am that I’ve nothing particularly extraordinary to write about!
What are you grateful for today?
Did you remember to remember it?
15 Dec 2011 5 Comments
Don’t you just love when you think you know exactly the way your life is gonna go and then something unexpectedly wonderful happens that changes everything? Well, that’s the theme of today’s post. As promised, here’s the beautiful unfolding tale I mentioned in a recent gratitude list.
So which “L” word were you thinking about? Love? Life? Learning? This is an autism blog after all. And all of those “L” words are appropriate. But I actually meant to reference the Showtime series here, it wasn’t an accident that I picked this title. It was intentional because I’ve fallen in love with the most amazing person I’ve ever met– and her name is Aubrey.
For so much of my life I had a vision of how things were supposed to be. Many of my challenges have revolved around staying still long enough to allow the inside of me– my ideas and passions– to coordinate with the outside of me– my goals and projects. It’s not that I wasn’t always open to allowing other people to be who they are, or that I thought everyone should fit inside some sort of “box” or category. It’s not even that I felt like I myself should fit into one particular character or role. It’s just that it has always been difficult for me to believe that anything is possible, to give my genuine attention to my deepest desires and most sincere wishes. I tend to limit my possibilities by letting my logical, rational brain try to determine the “how” of things, instead of letting my heart be happy entertaining the bigger dreams.
One of my favorite quotes comes from the movie “The Secret” which is about the Law of Attraction:
“Grass doesn’t struggle to grow. It’s effortless, it’s just perfectly designed that way.”
Every time I get to a point where I can let go of my preconceived notions about my life, where I can acknowledge there are greater forces at work in the universe and that I may be limiting myself by thinking that I actually *know* something about my future, miraculous things occur. Enter Aubrey.
I graduated college, got married, bought a house, gave birth to a son. I journeyed through autism diagnosis, early intervention, inclusion, special education with him. I gave birth to a daughter and journeyed through the land of the typical and other health issues with her. I survived, my marriage was steady for a long time. Then the storms came, our home shook, the pressures were too much and it all seemed to collapse.
Everything I thought I had, everything I thought I wanted, lay in a crumbled heap. Kind of like the way the living room used to look after a long, crazy day– a jumble of toys and couch cushions and snacks and socks and leftover dinner plates and unfinished projects. Only instead of all that stuff, there were unrealized dreams and changed expectations, puddles of tears shed for reasons I couldn’t quite put my finger on… Sure, I knew I was grieving the loss of visions and hopes of what family life would be like for me and my husband, I was grieving for what I would never experience with Alex. I was fine in Holland, just fine I told myself. But somewhere in the back of my mind, Italy still called to me and I had to redirect my thoughts and translate its words into the language of autism mom.
My marriage finally broke under the weight of that crumbled heap of emotions and anxieties and misunderstandings and betrayals. And I got divorced. On the road to separation, I had to come to terms with the fact that it was a distinct possibility that I would never find love again, that I might indeed remain a single parent for a long time. I took a deep breath, accepted this possibility, and began work on recovering my family life.
I created a safe space for myself and my children. I moved some beloved pieces of my mother’s furniture into a new home. And for the first time in a long time, I set my sights on intentionally creating *my* life and considering the key elements that help me feel calm and happy. I opened my mind just to the possibility that my life could include a healthy, loving, cooperative relationship.
My best friend teases me that I have a “magic journal,” that whenever I write from my heart a vision of how I want my life to be, that vision becomes reality. Such power, right? Well believe me, if I knew how this magic journal thing actually works, I’d wield that power to do a lot more good in the world. For now I’m content with marveling at the good luck I’m afforded when I get clarity through my written words.
At the suggestion of a relationship book author, I wrote down my ideal day. Pictures in my head of what happens, what my partner says to me, how the day looks, feels and sounds. I made it vivid and fun, I wrote words that made me smile, I included basketball for some odd reason (which I don’t play except when it’s baskesoccaling with my son). Then I read it over and gave myself permission to sink into it and believe for just a moment that it was real. I felt the joy of that day and I was thankful.
A couple weeks later, I met Aubrey. I’ve now lived my ideal day many times over. She is beautiful (my favorite word!), intelligent, accomplished in her profession, compassionate and warm. She was captain of her high school basketball team (thanks, magic journal). And I am so grateful for this new chance at true love.
Do you have an extraordinary, out-of-the-box or just plain special autism-family love story?
Please share it with me via comment or email at email@example.com
10 Dec 2011 4 Comments
She’s still at it folks! Through good times and bad, my little Hannie keeps me laughing and I am so grateful. If you missed the original Hannah-isms, read about my beautiful daughter and her amazing sense of humor here.
Disclaimer: Anything goes when it comes to Hannah’s views on the world. I suggest you put down your beverages now, before you end up laughing so hard you inhale them.
And now for your reading pleasure:
6 year-old on pets & family dynamics: “Ok Mom pretend you have a pet monkey. Like I’m a monkey. And Alex is not a monkey, he’s just a regular brother who has autism. And he doesn’t like dogs & I don’t either cuz dogs are scary for monkeys… oh! & I can sing and do exercises in the bathtub…”
Six year-old on really important things: Hannah: “Mommy, I am sooo sad. Do you see how sad I am? (makes pouty face) I am just. so. sad. because… (insert dramatic hand gesture here) .. I wish the smurfs were real. I mean, I am soo into smurfs now. I like them more than Ariel. And I wish they were real, and they could come into our house, and I could play with them, and…” (Mommy’s eyes glaze over… my god, what have we done?…)
Six year-old on biking: (Hannah, big grin in store) “I want the cool Barbie bike!!” (5 mins later) “This helmet is awesome, look at me!” (20 mins later) “When can I ride it??” (30 mins later) “Hurry up, get it out of the car, I want to go biking!” (5 mins later) “I am NOT riding that thing!” (2 mins later) “I didn’t say I wanted to RIDE it, but you CAN’T take it back!!” (10 mins & several deep breaths by mom later) “I know how to get on by myself!” (10 seconds later) “DON’T let go of me!” (30 seconds later) “I don’t care if it has training wheels, keep holding ON!” (10 mins later) “Look at me Mom! I’ll race ya!” (20 mins later, back to the big grin) “Can you BELIEVE I rode the whole way myself??”
(Hannah, spontaneously from the backseat of the car) “Mom, I smurfin’ LOVE you!” (Me, eyeing my kid in the rearview mirror, pausing to consider her inflection) “I, uh, smurfin’ love you too baby.”
(Hannah, 5 minutes later) “Mom, I f*#&in’ LOVE you!”
(Hannah walks in wearing a pink Eagles baseball cap with a purple pen clipped to the brim) “Ok Mom, when Aubrey comes over I wanna ask her about this. Am I off? Am I like way off? Am I super off? Did I hit the bullseye? Am I on? Did I get it right? Am I totally on? Or am I SUPER on?”
Dinner by Hannah: ♥ Salad greens with multi-seed rice cracker crumbs & raisins; Gluten-free mac & cheese with a smattering of ketchup mixed in, served cold; Hand-prepared green beans; Finely shredded Mexican cheese in a circle; Water service; Mint Hershey kiss ♥ “Mom, I read all the boxes, everything said gluten-free!” ♥ “I snapped all the beans myself!” ♥ “You get dessert right on the plate!” ♥ (and my personal fav) “Wanna know how I got those glasses down from the highest shelf??”
(Late for the first-grade breakfast) Hannah: “Mommy, do you know what a truant officer is?” Me: “Um, I think so. Don’t they catch people when they’re late to school?” Hannah: “No. A truant officer finds all the kids who are out having fun & puts them back in school where they belong.” (long silence) Me: “So Hannah, who’s the one who catches the late people? Cuz that’s who we gotta watch out for.” Hannah: “That would be an *adult* truant officer.” (knuckle bump)
Six year-old on importance of sleep: “If we sleep slow, we get more rest. If we get more rest, we have more energy. If we have more energy, we do more work. If we do more work, we get more money. If we get more money, we can buy more things.”
“Ok *enough* with the tiny hiney jokes. That’s it Mom. Enough.”
Six year-old re-enactments: Apparently we had a “situation” with the smurfs last night. Fortunately Barbie, Ken & their trusty companion were on the case with a butterfly net.