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, 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.

 

 

Family, Marriage, Parenting

Once upon a time, I was a ghost…

photo (8)For about a year I was a ghost.  It all started with the official day of Mae’s diagnosis.  Even though we had several days of testing, even though I knew it was coming, even though I should have been prepared, it really only hit me when the report arrived in the mail.  A big white envelope with lots of data to support that my child was about three years behind her peers.  The doctor who had done the evaluation was wise, compassionate and strangely good looking.  The fact that I was able to track his appearance was the one sign I had that despite the fact that my world had been blown open, I was in there somewhere.

The day after the report arrived, the cute doctor and I had a phone call to go over every sentence. The net of the call was, my child was severely autistic but with hours and hours of therapy she would make some progress. It was just unclear how much. It was a good thing I was a ghost, because a real person might not be able to live with that kind of uncertainty.  Instead I put down the phone and went about the rest of my day.  I went to the grocery store, taught some yoga, met my kids at the school bus, woke up the next day and did it all again.

I looked normal, I was functioning, but everything was an out of body experience. My ghost hands made dinner, my ghost legs went for long runs in an effort to exhaust my ghost brain enough to sleep.  There are very few pictures of me from that period of time, she was diagnosed in October and I am in the background of a few photos of the kids at Christmas. Usually just a bony arm, or sharp cheekbones and dark circles.  Ghosts don’t photograph well.

I thought I would always be a ghost.  I thought that my life would be split down the middle.  The first half where I was pink cheeked and hopeful, and the second where I was a ghostly and sad.  The normal operations of a happy life were available to me but I felt nothing as I went through each day. For weeks and weeks I didn’t even cry.  Finally, one night I got in bed with my husband and said, “I am so sad because I really wanted to dance at her wedding.”  We both cried all night. I was still a ghost the next day.

It was a year before I had glimmers of myself again.  At first they were just flashes; for a brief moment I would catch sight of the living, breathing me, and then I would become a ghost again.  Finally, the moments turned into hours, and the hours into days, like the part in the Wizard of Oz when the color seeps into the movie.  I slowly returned to myself.

It has been four years since I turned into a ghost, and a broken heart pushed me out to the edges of my own life.  I know that life has other ways of turning you into a ghost that are unavoidable, but I also know that eventually the color will seep back in.  When I see people who have been turned into ghosts by the loss of a loved one or a vanished dream, I want to tell them that they won’t be a ghost forever, that they will be able to feel and connect and live again.  Sometimes I do and sometimes they hear me. It can be hard to hear when you are a ghost.  My heart still hurts for my ghost self, if I could go back in time to that day when I became a ghost I would tell myself, “Don’t worry, it gets better. You don’t have to fix it. You are doing the right things. Just keep going, it’s all you can do.  You won’t be a ghost forever.”

Family, Marriage

Apraxia Awareness Day

 

Mae ChillingYou might not know this, but today is Apraxia Awareness Day.

As I thought about what I’d write for this post, I longed for a time when I was unaware of Apraxia. There was a time in my life when I thought that children were born, they cooed, they gurgled, eventually busted out with some random word, and then, like a train picking up speed, words came spilling out of them.

My older son talks so much that I occasionally pretend to be lost when we are in the car so that I can demand silence to concentrate on finding our way — a trick that I learned from my mother who did this to defend herself against my endless chatter.

When I thought of “speech issues,” like most people, I thought of lisps or stutters. Or, I assumed that if someone couldn’t formulate words, it was due to malfunctioning equipment, maybe a voice box that didn’t work or a misplaced tongue.

In college, the father of one of my closest friends had a massive stroke and was left with Aphasia.  He could no longer speak, except for a few choice curse words.  It was awful. The thought of him imprisoned in his own body made me sad for him, his family and all that he had lost.

It wasn’t until some 15 years later that I would meet Apraxia and truly understand how  devastating it can be for a human being to be robbed of words. My daughter Mae is living with Apraxia of Speech.

When I met my daughter, she was already walking. We adopted her just after her second birthday. I knew the first time I looked at her that this was going to be a bumpy ride.  She made no real sounds for the first six months we had her. She put nothing in her mouth, and rarely, if ever, pointed.  All of these things I eagerly wrote off as a result of her time in the orphanage. Institutional affects. She was in so many other ways normal. She looks normal. She is, in fact, beautiful   She jumps, she skips, she runs, she can do the monkey bars, and she laughs when things are funny. She just doesn’t speak.

Later, when we got through the hours of tears and testing to finally understand that she was Apraxic, that the part of her brain that manufactured words and the part of her brain that processed them for production and moved her mouth did not communicate, that was when we started to become aware.

If most speech disorders are lisps and stutters than most of the therapists we encountered in the early days were equipped for that.  They had no idea how to handle my daughter, it was like pulling a line cook out of McDonald’s and asking them to be lead chef at The French Laundry. They would hold up pictures of pigs in front of her and simply repeat the word “pig” over and over and over again until she or I would start to cry tears of boredom and exhaustion.  It was only several years in that we were introduced to the therapies and very talented people who could help.  They would touch her face, coaxing sound out of her mouth in small chunks and reward her efforts with incredible enthusiasm.

The thing that you can’t appreciate unless you have a special needs child with a condition like Apraxia of Speech is how much we can adapt and normalize things.  Today, when I see a six year old girl speaking I am in awe. I forget that they do that, because mine does not.

Mine points, she gestures, she solves problems herself, she gets frustrated, she loses interest. If she has thoughts about the weather I have never heard them. She’s never told me how her day was or asked how mine went. I do know that she loves peanut butter and hates jeans. She is not without thoughts or opinions. She has tons of both. She just can’t communicate them the way most people expect her to.

She has made progress, but it’s slow.  It breaks my heart when someone says “hi” to her, and ten minutes later I hear her force out her own version of a greeting.  It takes so much effort and the world has moved on.

I am never unaware of Apraxia. It sleeps in my bed at night and joins us for all our meals.  It is the boogeyman in the closet and a common scapegoat for all our other fears. It is also something that so few people understand. The more aware our friends and neighbors become the more they understand what she needs, what we need.

No individual child is Autistic or Apraxic.  Their whole family is Autistic or Apraxic, as is their community. For as long as one child doesn’t have access to the right tools and therapies, we are all losing.  A person without a voice lives on a planet alone. We owe it to our kids and each other to do everything we can to connect these kids to their voices and meet them where they are.

My daughter is incredible and I love her beyond imagining, and we will continue to wrestle with Apraxia. Someday, I plan to have a conversation with my daughter.  In my wildest dreams I imagine telling her we are lost and she has to be quiet so I can concentrate… maybe, someday.

Family, Marriage, Meditation, Yoga

Fragile and solid at the same time…

Mae and ColinThis morning I sat down to work my way through a giant pile of mail.  Tucked in with all the other mail was a giant medical bill I wasn’t expecting.  It has been many years of giant medical bills and they should no longer take my breath away, but for some reason this one made me feel like the wind had been knocked out of me.  It was Mother’s Day and Colin knows me well enough to know that thing that I would want most is time to myself.  He and the kids were out hunting and gathering a picnic for later in the day, and as I first sat and then stood in the office, then the kitchen, then outside, then inside all desperately trying to calm myself down, I just wanted him to appear.

In my head I was ticking off everything I have learned in my meditation and yoga studies.  I was going back over all the other massive medical bills we have paid, and reminding myself that it would be fine.  Still my head was spinning, I tried to sit for meditation, to lean into the feeling, to see if I could get at what was really at the bottom of it.  Fear? Why the intense reaction to a problem I don’t want to solve but know I will.

When Colin walked in I was so relieved, I showed him the bill and described my complete and total meltdown at its arrival.  He was calm, he agreed it sucked, he said we will deal with it tomorrow when it’s not Sunday.  He didn’t tell me to calm down, or ask my why I wasn’t expecting it.  I was able to exhale, we will deal with it tomorrow.

Being married is hard. Being married with young children is harder. Being married with a special needs child and all the stress that comes with it is harder still.  Sometimes, I can’t believe how hard it is, but when Colin walked in the door and just his presence made me feel better, I was also overwhelmed by how lucky I am. Sometimes it takes these crises that come up — in this case an unpleasant problem with a solution — to remind me to be appreciative of all that I have.

It can be easy to overlook each other in the same house, or respond to the difficulties of a grown-up life by being nasty to each other.  It is much harder to be honest, and sad, to be overwhelmed, and need help.  I hear all the time from people about how their marriage or partner is different than they had imagined.  When you are dating you never play the “How will you respond to medical bills?”  game.  Or, how about “What will we do if our child has a life long cognitive condition?” I didn’t seek out a partner thinking about the dark moments.  But I am grateful every day that I found someone who sees the darkness and even if there is no quick fix will always keep reminding me that there is light up ahead as well, and just to keep moving forward together.

Family, Marriage

Sometimes birthdays are complicated

Mae BirthdayWhen we think of our childhood birthday parties, we think of cake, and songs, pin the tail on the donkey and pinatas.  When your child is on the Autism spectrum, birthdays, like everything else, are complicated.  There have been years when I have not wanted to celebrate Mae’s birthday, not because I don’t love to celebrate her, I adore her.  But it made me sad when I spent time decorating the kitchen with balloons and banners so that like the other children on the mornings of their birthdays she can wake up to a party. Except, she doesn’t seem to notice, she comes into the kitchen, past the pink balloons and the streamers, pops up into her chair and awaits breakfast as if it were any other day.  Her presents do not entice her; there is no anticipation about what she will like, or excitement that builds throughout the day.  The truth is she doesn’t register her birthday or the fuss around it at all.

One year I almost decided not to do anything, I was wiped out. I didn’t feel like decorating and fussing about her birthday when it didn’t seem to matter.  When I mentioned this to a friend, she reminded me that birthdays aren’t about milestones or accomplishments. They are celebrations of a life.  She was right, and I have never forgotten that advice.  Mae’s birthdays are not necessarily about her being 5 or 6 or 7.  They are definitely not about pony rides or pottery painting.  They are about making a choice every year not to give up.

When I decorate the kitchen for the other kids I do it because I know they will come down in the morning and be thrilled to see their balloons and banners.  When I decorate it for Mae I do it for me.  I do it because if I don’t it will mean that I have given up.  The same way I ask her how her day was when she gets in the car at the end of the day even though I know she won’t answer, I will decorate the kitchen and buy her a birthday dress.  I will send treats into school. I will spend time picking out a present for her, because it matters to me that I tried.

We can’t just fight for our kids at school, or with doctors.  We can’t just fight the isolation and strangeness of Autism by finding communities that accepts us and our children.  My biggest fight is never to decide that because she doesn’t care I shouldn’t either.  I care that it’s her birthday because I love her.  I will continue to ask questions that go unanswered, and throw little parties that go unappreciated because if I don’t then it means I have conceded, and I refuse to give up on birthdays or my girl.

Family, Marriage

Things we wish you knew

Things we wish you knew
Things we wish you knew

Please don’t be scared of her, she is just a little girl.

She needs to touch everything because that is how she roots herself in the world.

When she doesn’t look at you when you are speaking, it isn’t because she can’t hear.

It also isn’t because she doesn’t like you.

Telling her she is pretty is not going to make her less Autistic.

It’s ok, I am not sad about Autism anymore and she never was, so you don’t need to make a sad face.

I want you to know that I am grateful every day to be her mother, but that doesn’t mean I am an unusually good person. She is my child, we are in this together, we are learning and trying, growing and changing. I used to plan that someday I would dance at her wedding, now I recognize that those kinds of plans are a gift that makes you feel sad. Now I plan small. I take life in careful bites. I savor the good moments and try and let the bad ones not break my spirit. Autism has taught me that a life is not a series of accomplishments or degrees from fancy schools. Life is about waking up every day and beginning again.

Family, Marriage, Yoga

Youth, wisdom and the state of my boobs

....early morning
….early morning

When I wake up in the morning after a healthy dinner and seven hours of sleep, I look the same way I did after a two day bender in my twenties. I know that the lines around my mouth are from smiling and the ones around my eyes are from squinting on many a beach day. The state of my boobs is upsetting, but a result of nursing my kids. The roundness of my stomach, a tribute to many a good dinner.  They are all signs of an instrument in use.

The shiny hair and sparkly eyes of youth are like a road with no line down the middle, or potholes. Really great for learning to ride a two wheeler, but hard to maintain. The drugstore is filled with products that are designed to hold off aging. Or, some semblance of it. If you really spend your days in search of youth, and all the beginnings that come with it, would you even recognize your actual youthful self? Would you recognize that real youth is about possibility and not perky boobs? Real youth is about not having met your children yet, or certain kinds of heartbreak. It’s about a future that holds more beginnings than endings.

Youth for me was also about insecurity and the anxiety of whether or not I was fit for adulthood. Each wrinkle and stretch mark has liberated me from that. I never stop trying to be a better version of myself, a better wife, mother, daughter and friend.

“Better” no longer means cute though, it means really listening when people talk. It means letting the enormity of life’s successes and failures sink in. It means celebrating with gusto and enthusiasm when there is cause and rolling up my sleeves and getting to work when I have to. It means not apologizing just so someone will absolve me of responsibility, but always apologizing when I think I am wrong. It means stepping back and looking at how far I have come, and then appreciating my chaotic and beautiful present.

Youth is about possibility, but maturity is about confidence and wisdom. Neither is really marked by age. We all feel youthful after we surprise ourselves; there is no more beautiful expression on the face of a yoga student than when she has come down from her first handstand in twenty years. I hear the wisdom in the voice of my ten year old when he talks about living with a special needs sibling. Neither youth or maturity are available commercially, they are the product of our experiences and our willingness to see them. Or even better, celebrate them.

Family

Every day I make a promise

mae every dayEvery day I wake up and make a promise to a woman who I have never met who lives on the other side of the world. She is my daughter’s birth mother.  When my daughter was six weeks old she wrapped her up carefully, put her in a basket with a note and a pendant and brought her to the pediatric ward of a hospital outside Beijing.  I think about how she must have felt that day as she rode up to the 6th floor of the hospital, knowing that on the way down she would be alone.  I wonder if when she found a safe spot and put the basket down if Mae was asleep or awake.  I wonder if as she rode down in the elevator if she ever thought about changing her mind and taking her baby/my baby back home with her.

The only thing I do know is that she wanted a better life for her daughter than she could provide.  So, every day I wake up and promise to do my best.  I promise her that I will never take her decision for granted.  I promise her that because she did her part, I will do mine.  I promise her to love my daughter for both of us.  When I kiss Mae goodnight, I kiss her twice, once from me and once from the woman on the other side of the world.  When she belly laughs as she jumps on the trampoline with her brothers I hope that her other mother hears it in her dreams.  When she cries, I comfort her knowing that there is a woman on the other side of the world who is depending on me.

Mae is Apraxic, a disorder that puts her on the Autism spectrum and greatly limits her speech, for now.  She has been my child for almost 5 years and we have not yet had a conversation, let alone touched on the issues of her adoption.  This makes it even more important for me to hold her other mother in my heart.  There are days when having a special needs child is unbelievably hard, there are days when I want to lie in bed and pull the covers over my head.  But I can’t because I think about that elevator trip, and what that other mother gave up.

My dreams of my daughter started long before I met her.  Just like with my other children as she grows they have changed.  I once dreamt that I would drive her to dance lessons, and host giggly sleepovers.  Now, I dream of hearing her say Mom.  It makes me happy to know that somewhere on the other side of the world is a woman whose dreams for her haven’t changed.  In her mind, Mae’s life knows no limits.  Every day, I promise her to do my part, every day I promise her that I will love that little girl for both of us, that I will never forget that she went down in that elevator alone.