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
in advocacy, autism home rescue, autism journey, postaday, residential treatment, the village, zerotohero Tags: advocacy, autism, gratitude, mothering, residential treatment, the village
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?
26 Mar 2013 4 Comments
in anger, autism home rescue, autism journey, elephants in the room, postaday, residential treatment Tags: autism, postaday, residential treatment
Mostly I write when I am inspired or feeling strong and defiant, ready to take on the autism-bad and replace it with hope and quirky-good. To conquer fear, doubt, shame, guilt and win. Today, however, I am writing to throw one big freaking temper tantrum. Ready? This is me screaming to the universe:
I WANT MY BOY BACK!!
It is not fair, God! Not fair! I don’t know what you’re playing at or why you chose me, but I sure as hell am ANGRY at you today.
We have been flexible, we have been compliant, we are following the rules– insurance rules, treatment recommendation rules, societal rules. Alex is now living at a new residential treatment facility. His father and I have confidence in the new treatment team and the staff. We are optimistic that with their guidance, Alex can learn to control his aggressive and violent behaviors and be able to live at home with us.
Once again, we’ve made the transition to something new, something “better.” We have taken the please-give-us-hope-because-we-are-beaten-down-and-we-don’t-know-what-else-to-do-for-our-precious-son option. Yet again.
Things have gone well so far with the new place. The treatment team cautiously advised that they will help Alex learn to control his behavior and aggression to a reasonable degree, we can’t expect perfection. I stated I could handle anything about the autism, anything about the plan. Just not violence toward me or his sister.
Agitation? Fine. Screaming? Fine. Non-compliance that doesn’t lead to dangerous situations? Fine.
But not the violent lashing out, not the glazed-over rage and intense physical aggression. No more blood, no more deep bruises that turn 17 colors before finally fading into a semblance of age spots on my hands and arms.
No more.
We had a good visit on Sunday. Alex was troubled earlier in the day by having to return to his dorm after his first overnight with his dad in a month. He wasn’t particularly content when I arrived, but I could tell he was glad to see me and Hannah. During the first two hours of our visit, I knew that Alex was at least comforted by our presence, and at least mostly enjoying our activities. We talked and interacted, Alex listened to me and responded, we were allies.
After running around the playground acting silly, we returned to Alex’s dorm for a quick break so the girls could use the bathroom. Another resident was crying and screaming:
“I want to go home, I want to go home.”
Alex wants to go home too. He reacted with screams. When Hannah and I finished in the bathroom and returned to Alex, he was sitting relatively calmly with his staff. It was clear he was still upset by the plight of his friend, but he appeared to be handling things okay.
Without thinking, I approached him and leaned over close to talk to him.
I said someone would help his friend, that the staff were all working to help his friend be okay, and that the best thing we could do was to have safe hands and be calm. Things I’d said a hundred times before over the last year. Alex listened, he leaned his head next to mine and seemed to breathe easier. I kissed his hair.
I felt safe and confident, being so close, because I knew we were on the same page and he trusted me.
I knew he was agitated, but I thought the worst was over. I felt like the mom I’m supposed to be, the one kids turn to when they want to talk or when they’re confused or sad. I kept talking to Alex in a reassuring voice. We were together in this moment and our situation (the day, the living arrangement, the vibe) wasn’t ideal, but we were okay together.
I got that wrong I guess.
Maybe everything was wrong and I didn’t see. Something must have been terribly off about my perceptions because what happened next came out of the blue and was bad. Alex stabbed me in the face with a pen just under my left eye. He drew blood. Another half inch higher and I could have lost my sight. I had seen the pen on the table, but didn’t think twice about it. I hadn’t been scared, I thought I knew he wouldn’t do anything to hurt me. For the first time in a year, I had been so blissfully ignorant of the danger.
I’d felt like we were back to the mother-son relationship we used to have– the time when I felt confident enough to tackle anything, when our daily circumstances could be less than ideal but we could be together and working on it and it would be enough.
Today I am sad, I am angry. Today I hate autism. I hate “intermittent explosive disorder” and every other name that childhood violence is called. I hate feeling traumatized and out-of-control after a simple visit with my children to the playground.
But what hurts the most is that I yearn to feel safe and protected, and yet I don’t want to be protected from this.
I don’t want someone to “keep me safe” from my son. I don’t want to have to watch for the pens on the table, to be an arm’s length away. I want to be able to kiss Alex’s hair and talk gently to him and be where he is. I want to do what I know how to do– to merge my “clinical” skills and my “mom” skills and just be the mother I was born to be to this one particular boy. My boy. I don’t want anyone to move me out of harm’s way.
I want the autism to go.
I JUST WANT MY BOY BACK!
01 Jan 2013 Leave a comment
in autism home rescue, beautiful boy, manifestation, mindfulness, mothering, postaday, residential treatment
The song in my head on this New Year’s Day:
I know this song was not written about autism or me and my son. But when I listen to it, it touches my mama heart in a unique way. I hear the words and I envision a home where Alex can live happy, healthy and safe with the people who love him most. I remember how our family worked hard to make the world okay for Alex, to enable him to enjoy everyday experiences, to show him new things. I think of the anxieties and sensory issues that are so challenging for Alex and so many kids on the autism spectrum.
Thank you, Phil Phillips, for writing a song that inspires this mother to think once again about creating a real, functional home for my son.
For inspiring me to believe it’s possible for Alex to come home to us, and for helping me to see the detailed pictures of that transition in my head.
I am grateful for your poetry and your beautiful music.
~*~*~*~*~*~*~*~*~*~*~
“Hold on, to me as we go,
As we roll down this unfamiliar road.
And although this wave is stringing us along
Just know you’re not alone,
Cause I’m going to make this place your home.
Settle down, it’ll all be clear.
Don’t pay no mind to the demons,
They fill you with fear.
The trouble it might drag you down.
If you get lost, you can always be found.
Just know you’re not alone,
Cause I’m going to make this place your home.
Settle down, it’ll all be clear.
Don’t pay no mind to the demons,
They fill you with fear.
The trouble it might drag you down.
If you get lost, you can always be found.
Just know you’re not alone,
Cause I’m going to make this place your home.”
~ Phil Phillips
21 Jun 2012 1 Comment
in autism journey, beautiful boy, communication, conversation, mindfulness, mothering, postaday, residential treatment, word behind the words
Today I am grateful for:
“God bless our whole life together.”
Amen.
16 Feb 2012 3 Comments
in autism journey, beautiful boy, communication, mindfulness, postaday, residential treatment
Graduated? Hmmm…
A staff member and teacher at Alex’s residential facility told me on Tuesday that I had “graduated.” I was walking with Alex up the big hill toward the gym after spending his lunch hour with him. It was Valentine’s Day and I absolutely *needed* to be close to the only boy who will ever completely own my heart. Alex is my love, and if he could express it in words I think he’d say:
“My mom is my best girl.”
But of course, the spoken words usually elude him. And he’s 11 now, not exactly the age for publicly confessing to parental attachment of any kind.
On our walk I was feeling calm, enjoying the unseasonably warm & shiny day, grateful for the feeling of Alex’s hand in mine, grateful that he was walking *with* me and not running ahead. Grateful that we were both present. Anxiety levels were low, warm & fuzzies were high.
I didn’t respond the first time his teacher said “you graduated” so she repeated it a few minutes later.
She continued, “You graduated. You’re not melting down anymore.”
I laughed. I’d certainly melted down on this poor lady on more than one occasion. Each time she listened patiently, she reassured me I wasn’t crazy, she encouraged me, and promised it would get better with Alex here, that I’d learn and grow through this process and things would become alright.
“It’ll never be okay. But it’s going to be alright.”
Choice words given to me by another autism mom with a kid like mine at the same place. That was two months ago now, but those words still wind through my head once in a while, like one of those scrolling banners outside a shopping center.
“Graduated.”
When will that really be, I wonder? Another word that scrolls by on the bottom of the movie screen in my mind, as I replay my Valentine’s Day walk and the special moments of that day with Alex. I wonder if I’ll ever feel closure, if I’ll ever feel “graduated.” If it feels “alright,” if I’ve passed the point of the initial meltdowns, does that mean I’m somehow farther along in the natural process of “autism mom?” Or is this just how it will always be, intense experience with a continuous, ever-scrolling banner updating & explaining & punctuating my experience?
Sometimes this autism life really doesn’t make sense to me. Or the words elude me, too. But I keep thinking to myself that as long as I can be present, no matter how long the journey or how much work until the next “graduation,” maybe it will indeed become “alright.”
05 Jan 2012 1 Comment
in autism home rescue, beautiful boy, community, elephants in the room, residential treatment, the village
… because that’s what this picture is worth:
This is Alex looking out over his new playground, content with his current circumstances, asserting his independence, looking more confident and comfortable. This picture is my autism inspiration piece for today. Although Alex still asks to come home, the residential staff and teachers report he enjoys living with his new friends. I am grateful for that.
21 Dec 2011 8 Comments
in autism journey, beautiful boy, elephants in the room, heartache, mothering, postaweek2011, residential treatment, the rest of the world, the village
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:
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:
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.
Residential Treatment:
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:
I hang up the phone and take a breath. A voicemail has come in from Elsie, another mom on a similar journey:
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…
12 Dec 2011 Leave a comment
in autism journey, elephants in the room, quotes, residential treatment
Freedom is instantaneous the moment we accept things as they are.
~Karen Maezen Miller
07 Dec 2011 Leave a comment
in birthdays, cancer, family, gratitude, mindfulness, postaweek2011, residential treatment
It is raining today, but still I am grateful. All the people I’ve spoken with for work have been cranky & depressed & difficult, but still I am grateful. I didn’t run, I had a crappy breakfast, I’m kinda tired & coming down with a cold. But still, I am grateful. My son is in residential treatment, family members are struggling with finances & lay offs, my dad is being treated for cancer.
But I am oh-so-grateful today!! Wanna know why?
Because today I saw a facebook post from a friend who is cancer survivor. She said her friend Rachel is “hanging on to see her baby turn 3 tomorrow.”
“Cancer sucks, I’ll say a prayer.” I thought.
So I looked up Rachel and I started to read her blog. Just a few sentences changed everything for me today. Go read about her journey, you will find inspiration. Because of a brave, honest, beautiful woman I have never met, my gratitude list is longer today.
Today I am grateful for:
Thank you, God, for giving me this life and not someone else’s. I am so grateful for my physical health, for my home, for the material things I have that give me comfort. I can hug my kids, I know that they are safe. I have love in my life, I have friends & family who sustain me through challenging times. I am a child of the universe & I can feel that & know it. I can recognize miracles & have the ability to talk about them and share my good fortune. Thank you, thank you for all of that.
Please Lord, help me to remember how blessed I truly am and to never take these things for granted. Amen.