Family, Meditation, Mindfulness, Parenting, Special Needs, Uncategorized

Want to know what it’s really like…

Autism for me has a perfect black page-boy haircut, it has rounded cheeks and long eyelashes. Autism for me bounces in and out of rooms, ripping and twirling paper.

Autism never sleeps through the night

Autism means that my child cannot tell me if her stomach hurts

Autism has made me fierce and difficult in the eyes of many school administrators.

Autism means I have been changing diapers for more than a decade

Autism means I run a small home-based pharmacy

Autism doesn’t make me sad anymore although some days it makes me tired

Autism means I will never have an empty nest

Autism means nothing scares me except the day when I can no longer care for my child

All over this country parents go to bed at night knowing that there is no system to support their children as they age.  April is Autism Awareness month, I am never unaware.  

I would ask that if you really wanted to be aware of what it was like to have a child with Autism, look at your children, your beautiful, talented, amazing children and imagine what it would be like if you knew that the world had no place for them.  Look at your baby, your toddler, your tween, maybe even your adult and imagine for a moment that without you they couldn’t survive.  That is what it’s really like to be aware of Autism.  

Family, Marriage, Parenting, Special Needs

I am a polygamous parent…

katherinemaeI am a polygamous parent.  We all are to some degree.  If you have more than one child you know they need different parenting styles and norms.  In our case having two sons who are neurotypical or normal and one daughter who is severely autistic, we are almost constantly managing two distinct families.  We are lucky in that our sons adore their sister and vice versa.  Since the moment they left for sleepaway camp she has insisted on spending hours sitting in the car.  Despite the fact that she can’t speak she understands that eventually that car will bring her back to her brothers wherever they may be.

As parents, the experience of two of our children leaving for a month is really strange.  There is the constant and vague feeling that I have misplaced something.  The chores are greatly diminished.  Both the dryer and dishwasher must be secretly wondering why they are experiencing this reprieve from constant activity.

I miss my sons, but the opportunity to be just a special needs parent, to not have to toggle back and forth feels like a break.  I can cater completely to Mae’s needs.  I can sit with her in the car in the driveway, or hold her hand while she eats, or take her outside so she can tap and touch every surface of our deck.  I can do all of this without feeling like somewhere a boy is bored or needs help with his homework.  Our boys are safe and happy, camping and swimming off the coast of Maine, while we are able to live on Planet Mae and not let anybody down.

The hardest moments are when the boys have disputes that need settling or hurt feelings from an event at school.  They will come rushing in the door, desperate to tell me their tales.  If the timing is right and Mae is at ease, I can listen completely and offer advice or just my lap.  If the timing is wrong and she is upset, they will strain to tell me their story over her wailing and I will strain to listen, with all of us unable to ignore the friction between the two worlds that coexist in our house.

Being a polygamous parent is hard. It involves managing different school systems and communities. It requires babysitters for family dinners or trips to the movies.  The upside is that when I have the luxury of only parenting one child in her very specific way, it feels like a delicious holiday.  If I was left with only one of the boys it would be excruciating; he would follow me around endlessly wanting me to fill the shoes of the brother who was away at camp.  However, with Mae she is thrilled to have us live in her world, to have our house be quiet and predictable.  It’s emptiness means more space for her to roam on her missions whose purpose is known only to her.

We will all be delighted to see the boys, and Mae more than any of us.  She keeps going up to their room as if they are hiding under the bed or something.  But in the meantime I will enjoy not having to change gears, I will live in Mae’s world with no sense that I am letting anyone down and it will be lovely.

Family, Parenting, Special Needs

Sometimes all you can say is Adios!

I have written many times about disastrous grocery store experiences with Mae. Recently, we 
had one that was not at all terrible, it was funny and sweet and reminded me that almost nothing 
looks the same to two sets of eyes. 
 
Last week Mae and I headed to our local giant Safeway. It is the kind with endless aisles of 
colorful boxes.  Giant stuffed animals sit on top of the freezers in the frozen food section. 
Everywhere you turn there is a something: batteries, bubblegum, pyramids of cereal, and to top 
it all off, music pipes out of invisible speakers and there are pretend thunderstorms in the 
produce aisle.  I do not think that the pretend thunderstorm makes the produce more enticing 
and question it as a marketing strategy. 
 
Because the store is an intense sensory experience no matter who you are, when I am with Mae 
and all of her sensory issues I try and get in and out as fast as possible.  Which is why we found 
ourselves essentially alone in the checkout line at 7:45 in the morning. The two women who 
were checking us out were deep in conversation about how they had both worked at Safeway 
company for years and were senior with the union.  They were commiserating about training 
new hires and how any day they expected to be bought out of their union contracts. They asked 
me what I thought of service at Safeway on a typical day, so that eventually the three of us were 
engaged in an evaluation of Safeway’s hiring practices. 
 
After we ran out of things to say they tried to engage Mae in conversation about her furry pink 
boots, Mae ignored them.  They tried to catch her attention with a balloon.  Mae ignored them. 
Ordinarily, I would have hurriedly explained that she was Autistic and pre-verbal and shut the 
whole thing down, but we were almost finished with the transaction and I just didn’t feel like it. 
 
I don’t have a Safeway Rewards card. Instead I use my mother-in-law’s cell phone number to 
access the various discounts. The number actually isn’t registered in her name either.  For some 
reason it appears on the receipt as “Miguel Hernandez”. When a checker is good at their job, 
they will hand me the receipt and say “Thank you Mrs. Hernandez,” at which point I smile and 
leave.  On this particular day, as our giant receipt appeared and the checker looked down, you 
could practically see the light bulb go off over her head.  She looked at my beautiful Chinese 
daughter and said “Hola! Como esta?” at which point I bit my lip so as not to laugh, took my 
receipt and said, “Adios!” as I pushed toward the automatic doors. 
 
Family, Parenting, Special Needs

Tread lightly…

mae every dayRecently, I attended a meeting of our local school board.  They  were getting together to discuss a projected budgetary shortfall and, as a new member of the school community, I am interested in learning more about how it all works.  I introduced myself as a parent but didn’t indicate that I had a special needs child.  Truthfully, it didn’t seem to me to be relevant; I was just a parent wanting what is best for her children.  Although, as a special needs parent we aren’t allowed to think about “best.” By law, we are entitled to “appropriate” so the word “best” is far out of our reach.  But, that wasn’t on my mind at all as I settled into my seat and made polite small talk with the woman next to me.

The budget conversation inevitably included discussion of special education.  There was a moment when someone suggested that they used to keep a financial cushion because the boiler could explode. Now you had to maintain a cushion because you never know who could move into your district.  This was followed by a comment from a school board member, “We have a $50,000 child we have never even met.” I guess she is referring to a child whose needs are so severe that they have an out-of-district placement. The district pays for the child to go to a school that can meet their needs since the district, for whatever reason, is unable to “appropriately” educate that child.

I didn’t say anything, my heart was beating too fast, my skin was too prickly and there were tears in my eyes and voice.  What I would have liked to say is: “A $50,000 child you will never meet? This probably means that this child’s parents have never really met him or her either.  They don’t know what their child’s favorite color is, or what they would like to be when they grow up.  If a child’s needs are severe enough to be placed out of district, chances are that child will never be a grown up, but a child forever. I bet that child doesn’t speak, maybe isn’t mobile. These kids are unpredictable, don’t always sleep through the night, require a small army of specialists and doctors.”

As a special needs parent I often feel like we are taking more than our fair share. It is clear in the glares of airline passengers or even glances over magazines in doctors’ offices.  I get it, my kid is ruining your peace and quiet.  Special needs parents have to develop a thick skin.  That’s been a little easier for us because Mae is totally unconcerned about whether or not someone wants to read quietly.  If she wants to jump and sing at the top of her lungs, she will do so with abandon…It is her blessing and her curse.

Mae had a rough start to the week at school, prompting a staff member to say to Colin, “You are lucky she is cute.”  Later, when he told me about it, we were laughing, “lucky she is cute? Or else what?”

When you have a special needs child, people say ridiculous things to you all time.  My favorite is: “I don’t know how you do it.” As if there were some sort of roadside dropbox I wasn’t taking advantage of.  She is my child.  I don’t spend my days wishing I could find some reasonable alternative to being her mother.

So, I have been reminded yet again this week how important it is to watch our words, and to remember that you have no idea what someone’s story is just by looking at them.  I don’t believe that any of these people meant to do any harm with their words.  I also know that whatever people may see when they look at my child is different than what I see.  She may be a budget line item to some, or a cute nuisance to others. To me she is magic and fierce. She has an amazing belly laugh and can jump higher than anyone in our family.  I don’t know what her favorite color is, but I know she hates jeans.  Chances are she will never be an astronaut, an actress, a fairy princess or a veterinarian, but she is my child and she always will be.  It is a lesson to tread lightly on ground we have never walked.  You never know when you could unwittingly cause pain.

Meditation, running, Special Needs

Synchronicity as a practice….

“Sanity comes from a sense of being synchronized within ourselves.”

Irini Rockwell

 

I came across this sentence and felt like it really captured everything that I have come to believe about finding balance in life.  I think everyone has had the experience of being out of sync with ourselves.  Sometimes it is as simple as agreeing to lunch with someone when you don’t really want to, or endorsing an idea you have misgivings about.  Other times it is more complicated: it can be time to change jobs, or end a relationship but inertia keeps you stuck in place.

 

There are millions of suggestions and avenues for creating synchronicity between our internal and external lives.  For me it is a combination of yoga, meditation, and running that provide the space to make sure I am not moving too far from the center.  For someone else, it may be swimming, walking their dog or writing.  We all need something, some sort of barometer of our own wellness.  Without a quiet center built into our lives we can find ourselves distracted by every shiny object or tragedy that life has to offer.

 

When I look at my daughter I am so aware that so many of her issues arise from the fact that it is almost impossible for her to be in sync with the world around her.  This morning she woke up and came running out to the kitchen table where I was sitting quietly, lights dimmed, listening to classical music and having coffee, she let out a growl of delight at the sight of me and jumped up on the bench where I was sitting and started clapping and laughing….it was 6 am. Mae is clinically not aware of the cues around her; being quiet in a library, joyous on her birthday, or patient in a long line, are all possible only if she is in the mood.  What the world wants, is not her concern, but for her that’s normal.  It also doesn’t bother her especially if she has bounded into my quiet morning like a freight train.  She doesn’t do guilt.  She is autistic.

 

For most of us though, we are aware when we are out of sync with ourselves or our world but not always sure how to fix it.  We can acknowledge it; we can say “I am working too much” or “I am working too little,” or “I am tired, sad or depressed.”  Being aware of it is an important step.  The next step is to  define what feeling in sync is for yourself.  We must be clear on what we think balance is, before we can head in that direction.  No matter what avenue you take this requires honest, and loving self reflection. I say honest because sometimes we get confused by what we think sanity looks like, and what it really looks like for each of us.  That serene woman in front of me in a yoga class may be sane, but I can’t be her, so I have to think about what serenity would look like in my life not my fantasy version of hers.


I am always interested in how to make things a practice, so I made a list of the areas in my life where I feel out of sync.  Some are big; am I professionally fulfilled and does it matter? And some are small: it bothers me that there is a cord hanging out of the family room ceiling.  Obviously, one of these things has an easy answer and the other doesn’t.  The point is not to have all the answers.  It is more to identify the questions, and then create some sort of framework to bring things back into alignment with each other.  The first part of the practice is creating the questions and the second part is moving to address them in practical ways.  Just engaging in the thinking process about balance seems to make me more balanced.  Almost always it is the effort not the outcome that has value.

Family, Marriage, Meditation, Parenting, Special Needs, Yoga

Love is not a limited resource…..

One of my earliest memories is of  standing in the grocery store with my mother and looking at a total stranger, keeping my eyes on them until I felt like I loved them as much as my parents.  I remember playing this game in stores, restaurants, and on the highway, staring at strangers until I felt the sensations that I associated with love.  A feeling of warmth in my chest, a kind of tingling in my arms and hands, a sense of connection even though the person wasn’t someone I knew at all.  I guess from a very early age I was interested in how my mind could influence or create sensation in my body.

 

What I didn’t realize was that I was practicing my own form of a Loving Kindness meditation. Love is a virtually unlimited resource, it is what gets us up in the morning; it is what sustains us through our darkest hours and lifts us to our greatest joys.  In my own life I define love as a sense of connection and a generosity of spirit that makes me feel safe and expansive at the same time.  Sometimes when life is busy, or we are feeling run down, that sense of connection to others can feel out of reach.  Practicing a Loving Kindness meditation for just a few minutes a day can shift our whole sense of what interdependence feels like.  The formal practice of this meditation requires you to find a quiet place, and sit with eyes open or closed.  Start by visualizing someone who you love unconditionally.  Focus on the image of that person in your mind’s eye until you can feel the sensation in the body that you associate with love.  Often you will find that you are smiling.  You will send that person the message:

May you be happy

May you be healthy

May you be safe

May you be at ease

Repeat these phrases in your head a few times as you hold that image of your beloved person in your mind. Then the practice dictates replacing the image of that person with an image of yourself and sending yourself these very same messages.  From yourself you move to an acquaintance and eventually to someone with whom you have conflict.  Each time you repeat the same phrases, sending these messages of love and generosity out into the world.  The very last part of the practice is sending these messages universally in the hopes that they reach all who need them.

The formal practice of Loving Kindness meditation is intensely powerful, and I encourage everyone to explore it. Recently, I have found myself returning to my own made-up version of it from childhood. Practicing not in a quiet room away from the world but instead in the hardware store, or the library, focusing my attention on someone (usually their back, so it isn’t weird) until I can feel a sense of loving them.  There is something about this practice that makes me happy, that makes me feel like I have tapped into an amazing source of good feeling that exists all the time.  Whether it is practiced formally or informally, working to spread love and kindness in today’s busy, intensely complicated world seems like an awfully good use of one’s time

Family, Parenting, Special Needs, Uncategorized

An Autism Vacation

Sky is the limitI have often wished that Autism took weekends off, and federal holidays.  One of the hardest things about having a special needs child is that it is relentless.  This can feel true with the other ones as well.  Occasionally when the boys are bickering, I think to myself that having a child who doesn’t speak really isn’t all bad.  However, on many Sunday mornings when your body wants a break and you want to chill on the couch with coffee and the newspaper, you can’t.  Sometimes you can, maybe she is feeling mellow and just wants to hang out, or maybe she wakes up at 5 and bangs on her door until you put her in the car which is where she likes to go first thing in the morning.  You just never know, and the not knowing means that even if you can chill on the couch on a Sunday morning you have one ear open the whole time.  In fact you never really relax because at any moment a tantrum can start.  Mae’s tantrums are like summer storms — they can come out of nowhere, rain furiously and stop as quickly as they started.  She bangs her head and bites her hands, she twists her body and kicks her legs, I can barely imagine what the internal storm must feel like for her because the outside is so dramatic.

 

This weekend was different though, this weekend we took an Autism vacation.  We were home, we were with Mae, we were in fact sanding and prepping the walls of the kitchen for paint.  Hardly a trip to the Bahamas, but we even managed to fit in not one but two trips to Home Depot.  It is glamorous around here these days.  Mae was calm, she was joyous, she happily joined us as we cruised the now familiar giant aisles.  When the sander was loud she did not attempt to drown it out with screams but went up to her brothers’ room instead and lay down in Pete’s bed.  There was not a tantrum, or even a complaint lodged.  I feel this strange sensation in my face and realize that it is my lower jaw relaxing for the first time in a while.  Yesterday, when I went running, I realized that I didn’t feel a moment’s guilt because I thought Mae might be home melting down.  I felt free.  It’s been a long time.

 

This change in behavior is due to a new protocol Mae is on.  When we made this move to the West Coast, part of the motivation was that really interesting research is going on in fields related to Autism.  Mae is part of a study on the effects of a new drug on mood regulation.  I had some serious concerns about taking this step.  I love that Mae bounces in and out of rooms like Tigger.  I don’t care if that’s a sensory seeking behavior.  To me it is part of who she is.  The thought of giving her something that would affect her personality made me uncomfortable.  It is hard for me to know what is Mae and what is Autism and can you love one without the other? I have worked so hard to accept and love her for exactly who she is that I was worried that this could change all that.

It is way too early to say whether this is a long term solution or simply a break in the clouds.  Either way I feel like we had a vacation from Autism this weekend.  Like all vacations, I didn’t know how badly I needed it until I felt myself wind down. Mae has taught me to adapt to anything, to enjoy the smallest victories and to love the people in my life for who they are right now.  I know that I am a better mother and a more compassionate person for the experiences she and I have shared, but this weekend reminded me that just because I can endure something doesn’t mean I have to.  It reminded me that we can normalize anything, and that is a survival mechanism that I depend on.

Mostly it made me remember how good a Sunday morning feels.  I am cautiously optimistic that we have more Sundays in our future and maybe we are really onto something.  For anyone who deals with an illness of their own or that of a beloved family member, the hardest part is that it doesn’t take weekends or federal holidays off.  I am reminded that no matter how grim things may be it is important to take a break: a walk around the block or simply a cup of coffee, but to try for some small period of time to find a Sunday morning.  Beach vacations in exotic places are great, but these days nothing feels more luxurious than than the quiet that comes on a Sunday when everyone feels safe and loved and knows where they belong.