Autism Moms: Our Deepest Pain Opens a Sea of Compassion

Yesterday was a quiet day to myself. I drove out of the mountains, into the nearest small town (modern civilization) with chain stores since I had a lot of shopping to do. It was a long day, picking up lumber, food and other supplies. At the end of my route was a stop into a department store to pick up two smoke alarms for the kids' rooms. It had been a very nice, peaceful day for me which is what threw me even more, and made my heart ache beyond words when I was at the check-out.

Due to some serious lines, I chose to do the self-checkout. I was scanning several small items when I heard an older, teenage child moaning across the way behind me. I couldn't see her, but it was clear from the volume that she had a developmental disability. Within thirty seconds, the moaning transitioned to yelling. It sounded too familiar for me, and my heart fell into my belly. My autistic son, Lee, has the same behavior when being made to wait in a store, which is why I stopped taking him into stores when he was about nine or ten. It was just too draining and painful. In no time, the yelling girl escalated from yelling to intense screaming. Lee does this, too, and it's intense. I turned around, and saw a gorgeous girl around thirteen years old. She was slender, with long dark, wavy hair. To look at her, you wouldn't know she had any type of disability, except for the fact that she screamed like someone was stabbing her. She was too old for tantrums of this magnitude, so she got stared at. I did my best not look, despite my inner desire to run up and hug the mom.

Her mother just went about the check-out process as if no one was screaming. The blood-curdling screams were so loud and intense, they filled the entire store. She had two other neuro-typical kids with her who stood there as if nothing was happening, handing their mother items from the cart. They were numb to the screams because this is a daily event at home. Despite the mother's outer calmness, I knew that inside she was dying to get out of that store. I knew that inside she was in an excruciatingly painful situation. To bring her child to the store tells me she had no one at home to take care of the child, but she really needed to go to the store. I used to do the same thing. I'd walk inside stores with Lee, and say a prayer that we got in and out quickly without any serious episodes. I also prayed for the emotional strength to handle it if he exploded (it is so hard to have people stare at a child you love, and for them to see nothing but their disability), and almost always had to leave the store without buying anything. This mother was a wall of strength. She had to be in order to control her emotions in public. Standing there yesterday, I felt something so overpowering that I had to get out of the store before I fell apart myself. That mother was me, several years ago. Here and now I never have to go through that again, but that mother doesn't know it won't last forever. She can't see the day when someone else can take over her child's care and she can have a peaceful trip to the store. When you're in it, the road feels endless. I know exactly what it's like, and when I walked past her to leave the store, tears streamed down my cheeks; I inwardly asked God to bless her and her family. It was the most helpless feeling imaginable- to witness another mom suffering like that, but know I couldn't do anything to help her. She had no idea the compassion being felt by someone in the store, but I'm hoping it got to her on a soul level.

I drove home in tears, and kept wondering if the mother gets to sleep at night. Lee always had sleep issues, so I was often exhausted. Her non-verbal daughter's outburst, the self-stimulatory hand flapping, body tension, and lack of tolerance for stimuli reminded me so much of Lee and his level of functioning. The world is far too much for their sensory systems to handle, and a large department store full of people with fluorescent lighting is complete hell for them. I kept saying a prayer for that family because I know first hand the day-to-day, night-to-night struggles. That one incident was nothing compared to a lifetime of helpless situations. Most times, nothing calms an autistic child down.. they just have to release their frustrations, and scream it out until they can't scream any more, and their nervous can systems re-boot. A mother is usually helpless in comforting them, and no matter how many times we hear the screams, we never get used to it. It was overwhelming for me to see this happening to someone else. I was looking at myself, sending love, and praying for the same grace that got me through it to can carry her, too.

So, to anyone reading this- if you see a mother with a screaming autistic child, especially the older kids who stand out and make us want to crawl into a hole of helplessness, please send loving and supportive glances her way. We moms need so much compassion in those times, not confused stares, or glances of irritation and judgment. Remember, you are looking at both mother & child in a very helpless and unimaginably difficult situation.

Letting Go, and Allowing Joy

This is a post I've been wanting to write for a while now, but have felt too guilty to actually post it. To be honest, when a family has lived with the extreme difficulties of mental illness over the duration of many, many years, and those challenges are finally lifted off their shoulders, it's hard to keep quiet. What I'm trying to say is, it's a dream-come-true to live fully, move freely, do things as a family that create positive memories, and not feel an ounce of worry in the process of doing these things. We are no longer restrained in our activities, and it feels incredible.

All that said, I want to be clear that we wish more than anything our child with mental illness could enjoy life with us. Instead, he has to live apart from the family. I will call him "S" in this blog to protect his privacy. There's an empty space we all feel for S, especially when we find ourselves deeply enjoying a family outing. Then, we remind ourselves of the reality- that these enjoyable, bonding, and sweet family outings wouldn't even be happening if S were still present. It's because he's getting the help he needs, away from home so we can all be safe, that our other kids can create positive and happy childhood together, and we can all look forward to creating more of them. It's a strange mixture of emotions, but the more time passes, the more we see how good the situation is for everyone.

We just went out to eat at our local Mexican restaurant. It's "tostada night" so we all ordered veggie tostadas, and enjoyed an evening of typical family conversation (not something we'd been able to do before). For the past couple of months, we've been going out to eat regularly as a family, and are forming our own family traditions on Wednesdays- tostada night, and Mondays- taco night at another restaurant. These weekly rituals feel very nurturing, but it's something we were never able to do before. Partly because we couldn't take Lee very easily (he's often unpredictable and disruptive in restaurants), but mostly because S did his best to ensure things went poorly due to his serious mental health issues. He just could not allow any family bonding to take place, or we'd pay.. so, we just didn't put ourselves in his firing line by going out as a family. In many ways, we felt imprisoned by his behaviors.

Many years ago, we ventured with Andrew and S from our Kansas home to Colorado for a vacation in the mountains. We drove in a comfortable sedan, and hoped to experience an exciting road trip that we'd remember for a lifetime. Well, we will never forget it, but not due to any sense of fond nostalgia. We call it The Trip From Hell, and it took us years to be able to laugh about it. We laugh now, but the suffering we went through as a result of all the drama (created mostly by S) caused a parental wound like we'd never known. I won't go into detail, but we both felt severely abused and tormented after that vacation. When we got home, I don't think we spoke to S for a couple of days, and we never got over the horrible memories. We resolved to never, ever put ourselves in that position again. We'd already been going through so much as parents, raising our two older special-needs kids, and we didn't need to add to our load. We spent the next few years just surviving our journey with a disturbed child, and decided to minimize family outings. It was a very sad fact, but we were disabled as a family.

We learned to live with the limitations and I remember how I made a conscious choice to make the most of life, despite any and all difficulties laid before me. No one, and I mean NO ONE was going to keep me from living my life as fully as possible. In between dramas, I made sure to dream, create, and grow, and I was determined to use the family challenges for growth. It was difficult because every time I would make progress on creative projects or personal development, things would get put on hold due to S's serious episodes at home. For me, it was always one or two steps forward, three steps back. Due to a strong sense of perseverance, I was moving forward in my life, but there were times I had to stand completely still and take in what was happening, which was often frightening and disturbing. I longed to know how it felt to just soar, and a deep, old part of me (my inner child) was completely exhausted and very sad. After all, my other kids may never truly know me, or never experience their mother fully due to one family member's ability to traumatize her. We were all trapped in a tragic circumstance.

This situation reminds me of my friends' stories about living with someone addicted to drugs or alcohol. My son was addicted to conflict, rage, and had an incessant need to infect joy with disharmony, and destroy relationships. When he didn't succeed at that, he was very good at scaring the hell out of us. I don't share all this to demonize my son-- he is ill, and seriously needed help. He still does. I share this to contrast what our lives were like just six months ago, with how it is now. It's a night and day change, and as beautiful as it's been, I'm not sure it will ever feel "normal" to us. There are times we sit at the restaurant table just staring at each other, absorbing the peace and harmony we feel with one another. It's a strange experience to have after so many years, but very, very welcome. We are learning how to be a regular family, whatever that is for us.

We can look forward to things now, and not dread them. Like planning family drives along the coast (which won't be Trips From Hell) because we enjoy each others company so much. Did I just say I enjoy my kids' company? Oh my gosh, up until six months ago I thought I hated being a mom-- that was a major downer after having five kids. I can play with my kids now, act goofy, touch them, cuddle them, come alive and have a ball with them and it doesn't cause a horrible outburst of resentment in anyone. It's exhilarating! I am allowed to love, and to be loved. I am allowed to be happy, create things and let ideas flow because I am no longer emotionally and physically terrified in my own home. For the first time in many, many years, I am soaring upward with no one pulling me down. It's very hard for me to say it, but this feels like one of the best periods in my life... ever. It's a lot like a divorce when you have to surrender your child to the Court, except that you still love and care like mad about them. But we all chose peace instead of pain; we chose to move forward in a way that was more healthy for everyone. We had to break a lot of co-dependent patterns to do that, much like families of addiction, and now we are feeling the rewards of letting go. Letting go leads to joy, liberation, self-love and freedom. We are soaring upward. Should I feel guilty about that? Probably not, but we all do at times. I'm shoving that guilt aside faster every day. Not only do I enjoy my family, I enjoy Me more. I'm at peace, and can focus on what matters most to me: my sadhana, creative projects, personal growth, and family. We all take it one day at a time, and each day has been so absolutely rich and full of unexpected and beautiful experiences.. I never thought it was possible to enjoy life this much. I'm thankful for the ability to do so in spite of everything.

(( Can you feel my heart-throbs of gratitude?! ))

Children + Meditation = Tools for Happiness & Success

I'm so happy to see public schools discovering the importance of meditation. I recently read an online article about how meditation has transformed some of the roughest San Francisco schools, and I felt inspired to chime in about children and meditation. The schools in San Francisco call it "Quiet Time" and it's practiced twice daily at the sound of a gong. In one school, they began meditation in 2007 and it has since created light years of progress for the students. It's had a major impact upon behaviors, academics, and even their overall attitude. Several other schools adopted the practice, and are seeing similar results. It all makes sense to me, considering how much daily meditation has impacted my own life for over two decades. I don't think I could function without it. There have been many scientific studies finding that meditation literally rewires the brain. It doesn't just give you a sense of peace because you slow down and relax, it increases a stronger sense of self, improves memory, decreases depression and stress, increases awareness, as well as many other cognitive and psychological benefits that remain with you throughout the day.

Andrew and Sosena meditating with Dad in 2010

My teenage son, Andrew, has severe ADHD. I would even go so far as calling it a "profound" case of ADHD. He has a difficult time controlling his impulses, and many times his brain is so disorganized he cannot carry on a conversation without confusing people. He's constantly diverted from tasks, and very forgetful. On top of that he's always on the go, rarely still, constantly talking, and has to be reminded to slow down. My point is, you'd never think Andrew would be capable of sitting down long enough to meditate. It's important that parents never assume it's not possible due to hyperactivity. If anything, those are probably the kids who benefit most from meditation.

We started young with Andrew. Most importantly, he was exposed to seeing us meditate, noticing the benefits, and we answered his questions. Remember, kids will never learn a skill from you that you don't already have. Kids are curious, so Andrew wanted to try what we were doing. In the beginning we gave him headphones with meditation recordings and an eye mask to minimize distractions. Again, he wanted to do this, it wasn't forced. He always sat upright in a chair, or on the floor cross-legged so as not to fall asleep. Sometimes he sang chants with us, followed by short periods of silent meditation together. It wasn't long before we brought him to a group meditation, probably around age ten or eleven, and he sat in complete silence and stillness for around 30-40 minutes at a time. The group environment really helps kids and adults to behave in longer meditations. I see it as a communion of consciousness, and each person is supporting the other in invisible ways. To this day, Andrew is able to sit in meditation for 45 minute periods with our local meditation group, and he's more still and focused than most adults would be. Of course, it's not necessary to meditate that long to reap many of the benefits (45 minutes is a very long time for a kid), so if your child can only do five or ten minutes, that's great. And like I said, for kids it really helps in the beginning to make it as fun as possible by using headphones and guided meditations. Sometimes it was spoken relaxation recordings, and other times it was special music that helped calm our son down. He really loved sitting with us in meditation the most. After meditating, our son always seems more calm, focused, centered, happy and confident. At age 14, we are now working at getting him to consider his own, private meditation routine at home. If he can get there, I believe he's really destined for a happy and successful life. Now, onto our youngest..

I like to join little ones at their level. Very young kids don't need to be taught to meditate, they need to see their parents practicing it. I can sit calmly, eyes closed, in stressed moments so that my youngest (age 5) can see how I'm handling things. Sometimes she asks Dad where I am, and he answers, "She's in her room meditating." Our daughter knows it's a requirement in life. If our daughter is having a busy or uneasy moment, I go into her space and ask if she'd like to sit quietly 'with me.' I ask her kindly to stop talking, we sit on the floor or her soft bed, and we face each other. I close my eyes, then she closes hers. I take deep breaths, and she always follows what I'm doing. Of course, she peeks at me, but she gets some quiet time to absorb the basic essence of meditation. The calming act of slowing down and going inward, no matter how briefly, is beneficial to her. With her, it only lasts a minute or two, but it always leaves her much improved (and me, too!) Meditation should be a way of life every bit as much as eating, sleeping, waking, dressing, and everything else we believe is essential to living. I can't stress enough how important it is for both adults and children, and to never underestimate a child's ability to slow down and go within. They just need to see us modeling it in our own lives. Parents, teachers, schools- "Quiet Time" has transformative power we've barely even begun to tap into as a culture.

Resources:

Stillness meets Science Audio recordings we've used, and have been effective for ourselves and our children (Free 20 minute demos available):
Harmonic Resonance Meditation, One of the first recordings used with our son
Heartwave Meditation, Powerful catalyst for opening and clearing the heart center
Energy Alchemy Series, This is my personal favorite due to the "Anahata" portion. It's very transcendental - Click next to each CD in the bundle to find a sample link. You just cannot feel fear or anxiety with these sounds, and it opens the heart

Useful information:
Meditating With Children, SRF Magazine, detailed article you can print
Teaching Meditation to Children, Yoga Journal
Teaching Children Meditation, a blog and video course
Guided Meditation for Children, YouTube with Dr. Tyler, ages 5-9
Meditation for Children, Sarah Wood, all ages

Laundry Lines, a Low Cost Luxury

At long last we have a basic, 3-row clothes line on our property in the woods. I have always loved hanging up sheets, pillowcases, blankets, and clothes on an outside line. Not only does it fill laundry with sunlight (a natural disinfectant) and make it smell amazing, I get another reason to spend time outside. Fresh air, peace and nature are my preferred companions during one of the most monotonous household chores.

The practical side: Our clothes dryer runs on propane, and our propane tank is very small. We don't use propane for heating, we have a pellet stove, plus electric heating for that. Our Propane gas is used primarily for hot water and cooking. The dryer is an appliance that uses up most of our propane, so a clothes line is a no-brainer, and seems like a great way to conserve money. I always say, any time we're saving money, it's a form of abundance.

With an abundance of trees, we hung ours between an Oak and Cedar

The beautiful side to hanging clothes, which is rarely mentioned, is how good it is for you. Instead of just standing in one place, in a boring laundry room, hurriedly tossing wet clothes into a hole, you carry a basket while walking yourself out into the clear light of day. Natural light does wonders for your mind, plus you get all that natural vitamin D. The basket can be a design that you love, too. It doesn't have to be a bulky plastic one, I prefer a straw or wicker basket myself. It can be a sweet experience for both the body and mind. Taking in the moment is a gift; a true luxury. I don't see hanging laundry as 'hard labor' any more than a walk in the park or a stroll up the road. It's enjoyable when we do it consciously, without hurry. I breathe the fresh air, feel the breeze on my face, listen to the birds chirping, stand still a moment or two and commune with nature in a way that stimulates my body and feeds my soul. Later, when I get everything off the line, I fold immediately into the basket (instead of just pulled out of a dryer into an overwhelming pile- who likes that pile?), making for a more enjoyable and efficient folding experience. Sometimes, I throw dried towels and jeans into my dryer for a few minutes afterward if they end up too stiff, but overall there is nothing like air-dried laundry.

If you have to use an electric dryer, did you know gas dryers are considerably less expensive to operate? When shopping for a  dryer, ours cost about $99.00 more than the electric dryers we looked at, but the overall savings has more than made up for that initial expense. If you use an electric dryer there are some facts you may be interested in.

Energy Costs
The typical household does over 400 loads of laundry per year. Even more in larger households. Sheesh, no wonder we get so tired of doing laundry! That amounts to significant electric bills. Gas dryers are 25%-50% less, but the cost can still be substantial.

Energy Resources Consumed
Did you know that your one household electric dryer requires nearly 900 pounds of coal burned every year? That's just for a single clothes dryer. Wow!

Carbon Emissions
An electric clothes dryer equates nearly 2300 pounds of CO2 emissions each year. An older, mature tree consumes about 50 pounds each year, so it takes about 46 trees to offset one household's CO2 emissions. This sounds crazy to me, which is why we will stick with using a gas dryer on rainy or snowy days. 

Wear & Tear on Clothing
Did you know that using a dryer, electric or gas, causes fabrics to wear out much faster than drying in sunlight? In my personal experience, clothes and sheets have lasted at least 2x-3x longer due to line drying. Another huge cost savings!

Now for the fun part-

Designs/The Creative Side
Are you interested in having a clothes line of your own, but you think it might be unsightly? Get creative! Clothes lines come in many, many designs, and you can even come up with your own. We have kids and pets, so desired multiple lines (we have three rows). We're in the middle of a national forest, so created a cute theme between two trees with ours, using only two short 2 x 4's, plus hooks, rope, and paint, costing a total of less than $12.00. Look online if you have trouble coming up with ideas, but I'm posting a few favorites I found that might help inspire you.

Classic design. Natural finish, potted flowers, and small clothes-pin basket on a hook with multiple lines. Eyesore? no way, this is adorable!

Pulley line. I've never tried one of these laundry pulleys, but they look very simple and convenient. You can stand in one place while pulling clothes to you.

Rustic pole line. Depending upon the style you like, you can use just about anything for a post. Old logs are great for that rustic, farmy style. I like how they made it a double line, despite how skinny the post is.

Inside line. For those in apartments, or you just don't like outside lines, there are many options for indoor drying. This is one of the most innovative I've seen, and it appears to fold away when not in use.

Bean pole laundry line. This is my personal favorite, incorporating food and clothing in one! You could place flower pots with flowering vines or roses there as well.

Here's a built-in laundry line, right on the home!

This is such a pretty touch, I'm planning to do this with some Pine or Cedar branches on my line. Who says laundry lines have to be conventional or boring? The most mundane things can have such beauty.
















The most important aspect to any laundry line is that you should love it, or you won't use it. Make it a joy, enjoy your time outdoors, and reap the reward of sweet smelling laundry that didn't cost a dime to dry!

Our First New Years Eve Out in 14 Years

I was sitting down at the table of a restaurant when my daughter's boyfriend inquired, "How long has it been since you two celebrated New Years Eve away from home?" I hadn't even thought about it until that moment. We've been way too busy enjoying our new sense of freedom, not to mention the major stress reduction we've been experiencing. Our severely disabled adult child went to a fantastic group home, and our son with scary behaviors is no longer in our home and receiving the resources he needs. 2013 was the most challenging year imaginable, but I can't seem to find the words to express the deep sense of liberation we're experiencing as a couple; as a family. It sounds extreme, but we feel like someone just opened the prison gates. I was sitting there at the table last night, surrounded by my sweet village community, eager to welcome in the new year with my delightful daughter and her boyfriend, and his father on guitar singing classics from the 60's. It was the type of scene I'd always wanted for new years eve, but never had the energy to enjoy. The sad fact is we hadn't been to a New Years eve party together in fourteen years.

When I realized how long it had been, I was floored and somewhat saddened. It had been so long. Go out on New Years eve 'til midnight, are you kidding? It wasn't even considered before. We always, always, always needed our sleep (we were religious about it), and usually retired well before eleven o'clock, if not ten. It didn't feel like a choice if we wanted our health and sanity. Lee's care was beyond laborious, not to mention the mental drain of raising our other Reactive Attachment Disordered child. The load really took its toll on us internally. We didn't know to what degree we were affected until last night, realizing what a gift it was to be out celebrating after fourteen years. A celebratory night out, with no worries or concerns about what was happening at home with Lee's care, or worse-- dangerous antics that our other mentally unstable son might pull. We always felt the weight, and it was often easier just to stay home. The joy of being able to finally live again has been overwhelming. It comes with a twinge of guilt at times, but we're both working on that, and it's getting easier. We both cannot stop talking about the fact that it's been fourteen years, though. We will always look back on that with a "wow" because we survived and overcame so much. I just know this is going to be an incredible time, and a brilliant year.

me, in disbelief & joy

A great year calls for some conscious intentions. I decided to choose a couple of words to carry forward. The first one that came to mind was PLAY. I did a lot of inner-child work years ago, and found out my child self was exhausted, traumatized, and dying to be released from the place that I kept her. I had to protect her a lot throughout the ordeal with my mentally ill son, so she only came out for brief periods when it felt safe. With the recent change in stress level (almost zero) she's doing the happy dance. Can't you see it in here eyes to the left? She's always mischievous, creative, adventurous, and funny, so she had a blast last night. I'm rediscovering that side of myself in a more open way, and giving myself more opportunities to grow, create, explore, and dream. PLAY will be on my mind a lot this year, as well as RENEWAL. Creating new family routines, allowing myself to have more fun with my kids (I can actually enjoy parenting), welcome new experiences, create a fresh and new feeling in myself & my home without external sabotage, I can create-create-create (yes, yes, yes!!), and most importantly my heart will continue to heal and bloom. I don't even know what RENEWAL will look like, but it feels like a rite of passage. PLAY & RENEWAL, I love you!