Wanna know the power you have in the universe?
Wondering if a village can move a mountain?
Unsure about whether every prayer and intention is truly heard and answered?
Balancing between family life with autism, self-awareness, and creative expression.
17 Jun 2014 6 Comments
Wanna know the power you have in the universe?
Wondering if a village can move a mountain?
Unsure about whether every prayer and intention is truly heard and answered?
06 Jun 2014 Leave a comment
Today I went to the bank to get my passport out of the safe deposit box. I figured it was probably time to renew it, even though we don’t have any specific international travel plans right at the moment. As I rifled through the box looking for it, I came across the baby journals that I wrote for Alex and Hannah. These are books I started long before they were born, when I first learned I was pregnant. I continued to write in them until each kiddo was in preschool. Alex’s journal is full; Hannah’s stops halfway through, but she is the second child and admittedly, I did kind of have my hands full by the time Hannah became a toddler.
Tucked into the front of Alex’s journal, I found a small note. It’s a copy of a letter I sent to my best friend in San Francisco and although it isn’t dated, I believe I sent it in the summer of 2006. My friend at that time was preparing for his yearly trek to Burning Man, “an annual art event and temporary community based on radical self expression and self-reliance in the Black Rock Desert of Nevada.” As part of the Burning Man community experience, each year they designed and constructed a beautiful non-denominational Temple where people could write and attach notes to loved ones, prayers, wishes, thoughts, hopes and dreams. At the end of the week-long event, the Temple was burnt down, after which everyone would pack up and head home. I had been wrestling with my guilt over Alex’s autism, trying to connect with my higher power and stay strong as Alex’s mother. I wanted to send my tangle of emotions and resolve out into the universe, somehow point it all directly towards the heavens, and let it go.
My friend did me a great honor that year by carrying the note to the Temple on my behalf. He taped it high on one of the walls and took pictures so I could see exactly where it was attached. Then he videotaped the burn. I watched and cried as my words rose in ashes straight up to the sky. I made my promises to my son, and let go of what I couldn’t control. And I felt something heal inside me.
Through all the challenges we have faced recently, and despite all the pleading prayers and focused intentions on which I’ve steadied myself, I had forgotten something important. It is not my place to determine Alex’s life. He is a child of the universe, and as such he is always cherished and protected and lifted up. My job is simply to do the best I can to take care of him while he is here on earth, and to respect the life he was born into for reasons more important than right now, and a greater purpose which I in my basic human-ness may never fully understand.
Reading the prayer of my younger-mother self today was a timely reminder of all of this. I am grateful to be able to share it with you:
I love you and I am proud of you always. I feel I was born to be your mother.
You are bright and capable and you will make great contributions to the world.
I bring this prayer here because I want to let go of my guilt. I know I did not cause your autism. But when I see you struggle with your words and scream in frustration, I wish more than anything I could make it better, make it easy for you, take away your challenges. Yet I know the easy path is not the one you’ve chosen, you chose this life for its lessons.
I pray for strength. I pray for compassion. I pray for hope.
I know that we are stronger together and that God has blessed us with each other. I promise I will never give up on you. As these prayers go up to heaven, may we both be lifted high enough to see beyond horizons.
07 Mar 2014 10 Comments
Our family needs your prayers. We have just been told by Alex’s residential treatment staff that unless his aggressive behavior significantly decreases in the next two weeks, he will have to leave. This may mean my baby– my heart– may be sent to another facility several states away. I will do everything in my power to make sure he stays at his current placement and near us, his family, but I need your help.
Please, if you are part of any kind of prayer chain or community, add Alex’s name to the prayer list. Pray that his high-intensity aggression vanishes, that he remains calm and safe at all times, especially with the residential and school staff. Pray that a higher power will influence all the decision-makers in this case and will guide the hearts and minds and hands of those who care for Alex.
And please pray that Alex will know he is not alone and all the people who love him, clinicians and teachers included, will stick by him and advocate for his well-being. Alex needs to know his situation will change for the better if he is safe, and that the people around him believe in him even though he struggles. No other place has been better for Alex than where he is now and we still believe they can help Alex get to the point where he can come home.
If you feel so inclined, please share this message with as many people as you can. My goal is to have at least 50,000 people sending out prayers and good thoughts by tomorrow. Thank you, we are grateful for your help.
08 Jan 2014 1 Comment
I’ve been gone for far too long and I’m sure there are folks out there wondering if our family has fallen off the face of the earth. If you’re miffed I’ve been missing, by all means let me know. Because sometimes this autism mama blogger needs someone to light a fire under her butt. Might as well be you.
Truth be told, the past year has been a wonderful, crazy, rollercoaster of life events and I expect 2014 to be equally as amazing. I am excited to tell you all about it! I’ve done a lot of dancing. My outlook and my family have expanded in wild, new ways and this year I know I’ll have an abundance of cool opportunities to take my writing and my passion for life to a whole new level.
So please check in, say hi, stay tuned and keep coming back. I’ll be here. Promise.
09 Jul 2013 Leave a comment
Today I am grateful for:
I am grateful for…
the chance to live without assumptions…
the freedom to experience my life…
and the opportunity to learn from it over & over again.
10 May 2013 7 Comments
Eight years ago today you came into the world at 11:10 pm on your actual due date, making you the first female in our family to be on time for anything. Dr. K. said it was the most perfect birth he had ever witnessed, and I *knew* that God was right there in that room with us. When you were born, Dr. K. put you in my arms and you raised your little head and looked straight at me. It was the happiest day of my life!
I love you more today, eight years later, than I could ever have imagined then. You have brought a magnitude of hope and sunshine into our family. I admire the way you see the world, your sense of humor, your gratitude and appreciation for life. I am honored that I was chosen to be your mother and I just want you to know I so enjoy the life we have together.
This morning I noticed the note and picture you left on the fridge. You drew yourself with me, Alex, Aubrey, Dad and three little dogs, and wrote:
“I love my family each and every day.”
Ditto, beautiful Hannah Rose– we love you too!
06 May 2013 Leave a comment
When I was asked to contribute a piece to Lesbian Family on what it’s like to parent a child on the autism spectrum as an out lesbian, I was so honored I actually giggled. To be able to be in a place in my life where I can be open and out and tell the truth about my family, and to share all that with such a supportive community…. well, that just makes me wanna sing!
… Which I won’t do here, but if you were standing in my kitchen, you’d get an earful of show tunes from the woman my future sister-in-law calls “the happiest gay person ever!” …
For me, parenting a child on the autism spectrum feels not so different from my coming out experiences. The lessons I learned on each side seemed to be all about truth-telling and living life authentically. The more aware I became as an autism parent, the more I began to live in that space of being ready for anything, open to life, comfortable in my own skin. Not because I initially wanted to learn about myself or change necessarily, but because I had to. My son challenged me to connect with him exactly where he was and use whatever resources I had to stay in the moment and accept whatever came next. It was the only way to parent him. I had to tap into my intuition and my heart, and throw away all the “what to expect when you’re parenting” books.
The more time I spent living in that open space, the more I wanted all the parts of myself to align, for everything to feel right in every aspect of my life. I had to find my own “truth” and go from there.
Coming out as a lesbian later-in-life was so easy because I’d already had my preconceived notions about the way my life “should” or “would” be shattered during the early years of being a special needs parent. I no longer needed to try to create an image of love based on what society-at-large had to say about it, I could recognize love where it existed naturally. I didn’t need to do anything– relationships, work, parenting, art– the way anyone else thought it should be done. Nothing anyone else touted was necessarily “truth” for me and once again I had to find my own and live as honestly as I could.
My son, like many kids on the spectrum, cannot really lie. And now thanks in large part to him, neither can I. So in the spirit of celebrating our truth and our families and our relationships, I present to you the…
TOP TEN REASONS I LOVE BEING AN OPENLY GAY AUTISM PARENT
10. Acceptance where it counts, baby! I didn’t have to come out to my autistic son. He understands what it means to love someone exactly as they are.
9. Hearing my 7 year old daughter tell everyone at our polling place:
“I’m voting for Obama because my brother who has autism watches Elmo. And also because I want my Mom to be able to marry the woman she loves!”
8. RAINBOWS— one of nature’s greatest light displays! Eternally captivating, shiny and colorful. An awesome sensory experience. And they always seem to come *after* the much-too-loud thunder-booms.
7. I can relate to all the coolest autism professionals. Of course I’m not saying all the cool therapists and teachers and autism staff are gay, but you gotta admit that in order to be effective in working with kids on the autism spectrum, you have to have a pretty open heart, a flexible mind and an awesome, inclusive, curious attitude. Wouldn’t you agree?
Which brings me to the next reason….
6. An ever-expanding network of creative connections! The bigger the village, the stronger the community, the more sanity for autism parents, the brighter the future for our kids. And once again I’m back to big beautiful gay rainbows all around!
(… here come the show tunes dancing through my head in a huge street-scene coordinated dance number …)
5. Plenty of practice forging my own path. How did I come to be marrying the woman of my dreams? The same way I came to accept myself as the parent of my utterly unique children– through a lot of hard work. Even though it didn’t feel comfortable at first, everything in my life was by my choice. It was tough to be at the beginning, and the journey is constant, but I love, love, love the place I’ve come to now.
4. Twice the MOM love! Last year my son officially changed my name from “Mom” to “Mom-Aubrey.” That said it all. Plus, the whole is definitely greater than the sum of its parts. We’re expanding the family unit. Not just Mom, not just Dad. “Lesbian Dad” and “Second Mom” and “Mama Cat” too. Kids need more, not less– more love, more hugs, more positive experiences. So do autism parents. (Refer to the village comment in reason #6.)
3. The chance to SHOW my children– especially my autistic son who is a visual-experiential learner– that true love comes to those who believe in love and follow their hearts. The chance to be a living example for them of what partnership, respect, acceptance and cooperation really are.
2. Inner Peace! You’ve heard the expression “If Mama ain’t happy, ain’t nobody happy” at special needs conferences and IEP meetings, right? Well honey, let me tell you– this Mama is happy. In every way. In ways I couldn’t even have imagined ten years ago. And much to my surprise, the happiness just keeps on expanding to everyone in the family. Can you say “trickle down effect?”
And the number one reason I love being an openly gay autism parent…
1. Because I’m convinced I was put on this earth to do something. Many days I’m still confused about how exactly to do whatever it is I’m supposed to do…
But when I look at the back of my car with the “Coexist” sticker, the Autism ribbon, the Rainbow peace sign and the Human Rights Campaign logo, I have to smile and breathe a little easier because it all just goes together and somehow I know I must be on the right track.
02 Apr 2013 Leave a comment
Today we light it up blue, my beautiful boy!
In honor of you, my beautiful boy!
Because you are loved and handsome and fine,
And because I am honored you’ll always be mine!
18 Dec 2012 5 Comments
Since the Sandy Hook Elementary School tragedy on December 14, my heart– like the hearts of parents across the world– has been heavy. I have not let my second grader out of my sight since I picked her up from school on Friday afternoon. We have cuddled more, talked more, touched more. I have listened more.
And I have thanked God for every minute because I know how precious and un-guaranteed our time together is.
Before I collected Hannah at school on Friday, I went to my son’s residential treatment center to pick up clothes and medicine for his regular weekend visit to his Dad’s house. Alex had been in the hospital because of stomach issues since Tuesday afternoon. He was discharged after lunch on Friday.
When I left Alex’s room and crossed the hospital lobby Friday morning, I said a silent prayer of gratitude. We are blessed to live close to a world-renowned children’s facility, and everything about it is exceptional. The lobby has wide open space and designs that catch the light and make patients feel like the folks who work there don’t have to commute to work because they must just descend from the heavens right through the skylight, like angels. Everyone– from the security guards to the surgeons– loves children and cares for their families as if it were second nature. When I walked through the hospital on Friday, I felt comforted, cared for, safe.
That was before I heard about the shooting.
On the drive back to our neighborhood with Alex’s things that had been laid out on his bed by his staff neatly tucked into a bag beside me, I listened to our local news station and began to cry in the car.
Eighteen children, they said then. It couldn’t be.
Between the ages of 5 and 10, they said then. No, no, no….
A familiar pain pierced my insides, the sort of heartache that makes new parents leave the movie theater after a child-abduction scene or stop eating beef when they hear a news story about a school-age kid dying after ingesting a half-cooked piece of hamburger. You know– the kind of pain that is not from your own family experience, but that threatens your security anyway. That makes you want to hug your kids right-this-minute and find some-kind-of-comforting words to say to the other parents, because you know it could easily be you who needs the comfort-that-no-one-can-really-bring-you-no-matter-how-hard-they-try.
I dropped off Alex’s bag and sped to Hannah’s school. More cars than usual were waiting early. I walked to the front lawn and stood with my hands in my pockets, trying to keep casual and not let the thousand words in my head explode on the scene all-at-once.
I looked around at the other parents, a beautifully diverse crowd of every color, background, family arrangement. I looked at the school and the artwork in the windows. I looked at the houses across the street with their holiday decorations and shutters and shrubbery.
I realized in a more-than-speculative way that no one, anywhere, is really immune from the tragedies that hit the news.
I caught the eye of Hannah’s first grade teacher and she crossed the lawn to meet me. I had been keeping friends updated about my son’s health and sending prayer requests over the previous days and she was happy to hear that Alex was out of the hospital. As she embraced me, she said:
“I gave Hannah two big hugs today– one for her and one for you.”
Again, I felt comforted, cared for, safe. And grateful.
Hannah and I spent a quiet “girls’ night” watching movies, eating popcorn and chatting with friends who were staying with us for the weekend. I thought about how we will talk about this terrible thing that happened, and I wondered what she will hear at school on Monday and what questions she will ask.
As the weekend continued, I learned more and more about what happened at Sandy Hook. Now they were saying twenty children…
… first graders….
Last year my first-grader Hannah amazed me with what she learned and how she grew. She was a compassionate, beautiful light in our family and my proud mama heart secretly felt there was no way she could ever impress me more. Then came this year, when she has blossomed beyond my expectation. I listened to more news stories and I cried for the parents who would never know that second-grade feeling.
I choked through a video of heroic teacher Kaitlyn Roig explaining how she hid her students in a tiny bathroom and told them they were loved because she believed that was the last thing they would ever hear. I sobbed reading about 27 year old Victoria Soto who hid her students in cabinets and closets, saving their lives by telling the shooter the kids were in the gym before he shot and killed her.
Aubrey told me I had to stop watching the news and reading the stories. But I didn’t. Like everyone I knew, I was searching for some meaning, wrestling with questions no one can really answer:
Where was God in all of this?
What precipitated such horror?
How would the press, the doctors, the “specialists,” the politicians, the parents respond and explain?
When the reporters said the words:
“… autism spectrum… mental illness…”
I looked for the first time at the face of the 20 year-old killer. I have only seen one picture of him because I cannot bear to look any closer. In the picture he looks young, skinny, with a mop of brown hair. More innocent than his actions would reveal him to be.
And more like my son than I had expected.
“My little girl has so very much in common with the 20 young lives cut short by a senseless act of violence.”
She goes on to describe her heartbreak at hearing implications by reporters that the killer may have done what he did because he was somewhere on the autism spectrum. When I read her post, I felt heartbroken too. There is something about people making the connection between autism and what happened to 20 innocent children at Sandy Hook Elementary that is not only wrong and unfair, but that saps the energy of parents like me, somehow twisting the sadness we feel into anger and defensiveness.
And the truth is, as Prof Mom Esq plainly and clearly stated:
“Autism is a neurologic disorder; it is not a mental illness.”
Still, even as armed with information and resources as I am, a choking, cold grief encompassed me last night as these different stories and images came together in my head. My daughter, so like the child victims. Her compassionate teachers and suburban school, so like Sandy Hook Elementary. The parents…
And a troubled boy in a photograph who did this terrible thing. A person we all will speculate about and condemn and probably never, ever understand.
Autism does not cause violence. And violence does not always come from expected or explainable places.
My autistic son is not a murderer and I have to believe he is not in danger of becoming one. But he is challenging and misunderstood and often troubled. And I am a parent who has been asking for help for him continuously since he was a toddler.
How many other parents are out there, asking for help for their troubled children right this minute?
Another post crossed my desk today, written by yet another mom, Liza Long, with an important, heart-wrenching, difficult-for-most-to-imagine perspective. She is raising a son who has intense behavioral challenges and she questions the available resources for those with mental illness. She writes:
“In the wake of another horrific national tragedy, it’s easy to talk about guns. But it’s time to talk about mental illness.”
This mother passionately advocates for “a meaningful, nation-wide conversation about mental health.” And I agree with her. We need to talk openly about the needs of families and individuals in crisis so we can find things that work instead of creating more problems for them within a flawed system.
So where was God on Friday? And where is our Higher Power, the Universal Good now?
I remember a story years back about a special needs child who was given a chance to play in a little league baseball game. Thanks to his peers who made sure his attempt at bat was successful, he scored a home run. The boy was overjoyed of course, and his father later remarked that he felt the true miracle was not so much in how his son experienced that day, but in how the other kids came together to make it happen. The boy’s gift to the world– what the father believed his son was put on earth to share– was the opportunity for such miracles to take place.
I believe that is where God is– in the middle of those miracles.
God is between the conversations we are having right now. He is in the pain we feel, in the ways we are compelled to reach out to each other. He is in the actions we take to give another person the sense of comfort, security and safety we so desperately crave.
There is nothing that can be done to put the broken pieces of the tragedy at Sandy Hook Elementary back together the way they were. Humanity is broken and imperfect all the time. But perhaps all the bits and pieces, the grief and the sorrow can come together in a way no one could ever have predicted. Perhaps God did not desert us. Perhaps the miracle is not hidden somewhere in those horrific events or in all those circumstances that came together in all the wrong ways to cause unimaginable suffering for the Newtown, CT community.
Perhaps the most important miracle is yet to be uncovered.
Maybe it is in the way we will come together now to make a change,
to create a different future,
to have a “nation-wide conversation,”
to open our minds and hearts to the misunderstood,
to protect the innocence of children,
to heal the traumatized…
Perhaps God is here.
I am grateful for everyone who has felt compelled to write over the last 48 hours and for their honest, raw, heart-felt words.
I have found my higher power in-between your letters and essays, and in the courage you found to share your thoughts.
21 Jun 2012 1 Comment
Today I am grateful for:
“God bless our whole life together.”
19 May 2012 3 Comments
18 May 2014 2 Comments
I am so grateful for all the blessings we have in our lives! Our family has been loved and supported in the most amazing way over the past few months since the craziness started with Alex’s placement and talks of moving him. I am so grateful for all of your prayers and good thoughts!
The update is that in just about every aspect Alex is doing better. The high intensity aggression has come down, medications have been adjusted to the point where we think we’ve got the right amounts to help just where he needs it, and he is overall a happier, healthier kid. Alex’s direct staff seem pleased in general.
But on Friday, one of the administrators called me to “touch base” about my trip to New Hampshire to see a possible placement (a trip I’m leaving for now). He said plans are still moving forward to make Alex leave his current placement– the only place that has made serious progress towards helping him get home to us. When I asked why that was still the case given all the positive progress we’ve seen (which has eliminated doubts of their being able to treat him) I was told they’ve got a “quit while you’re ahead” type policy (my words, not his).
So I need your prayers again. Please pray that all of the people involved with my beautiful boy will see clearly the importance of keeping him near his family, and will advocate in every way possible to make that happen. Pray that I will know the right questions to ask in NH to get the information I need to advocate for Alex. And please pray that God will open the hearts and minds of any naysayers so that they can clearly see there is a win-win-win solution out there and we can find it.
This is not about a mother’s sadness at the prospect of missing her son. It is about the deep knowledge I have of what makes Alex tick and what will truly help him. I refuse to allow him to be punished by taking away the one thing that is most meaningful and rewarding to him– family contact.
Thank you for being here to listen.
10 Feb 2014 2 Comments
While you were away I had a lot of time to think. And now that you’re back, well… the thing is… I love you.
It might sound hokey and you’re probably thinking, “You say that to all the forces of nature after an ice storm.” But baby, I’m serious.
I know I haven’t appreciated you for all the little things you do, like running my dishwasher and lighting my front porch– and the night lights! man how I love those little things….
But I promise to pay more attention to you, and to be more grateful and not overwork you or curse at you if you run up my credit cards at PECO buying new currents or transistors or whatever you girls are into these days…
Hey wait, come back, that was a bad joke, sweetie, don’t be mad.
Anyhow, I know we’ve been on and off for a while. But I’m ready to take our relationship to a whole new level…I want you to stay. Permanently. Please tell me you’ll stay.