Missing the signs

There are any number of things I wish I knew when Luciana was born. I was prepared for everything, a type A personality thing I'm told, or at least, just about any scenario that books, parenting blogs and moms groups can prepare you for. I was prepped in the case I needed a Cesarean section. I had a backup plan if I was unable to breastfeed. I knew all about infant sleep, swaddling, different kinds of bottles, diapers, I thought I had it all planned.

Most first time parents say the same thing, and get more than a handful of surprises when their child comes into the world. But, for special needs parents, it isn't anything at all like that.  It could probably be best described as getting a child in a language that no one understands.

It felt like I had been reading all of my prep work for a baby in English, then I was given a child who spoke Mongolian, or Aleut. Sure, I took classes in German and Spanish, and as an adult learned some Japanese, Welsh, Korean, and am conversational in Italian, but I know absolutely nothing about Mongolian or Aleut.

So, I have a baby communicating in a language I don't speak, and I look around me for help. Friends, family, doctors, all of them offering their translation of what my child is saying. All well meaning, intelligent and helpful, but none of them speak the same language as my daughter.

Eventually my daughter does "something" that makes doctors think she can't learn "English" and misses one critical milestone after another. Therapists are called in, they still don't speak her language, but they have seen children like her for years.

Things like that go on for a few years, until finally, I learn the language my daughter speaks. I come to understand her, not the other way around. My understanding of her is the only bridge I can build to connection. I had to go through the process of education and learning, not her.

That's all a big complicated analogy that might only make sense to me, but it's taken me a long time to come to terms with what our journey means. I didn't understand for so long, and am still desperately trying to see the world through my daughter's eyes. I am desperately seeking a journey to understanding her.

Which gets me back to the point of this. Last week I saw a doctor myself to rule out a genetic disorder that both Luciana and I share mild symptoms of. It is as far as we know, the only condition that would outrightly rule out her having Cerebral Palsy caused by Static Encephalopathy, which is a big word for brain damage. Chances are much higher now that our daughter suffered a stroke sometime near her birth.

That's been the hardest part to process for me. It's been four and a half years and I've been unable to confront or reconcile what happened. I've learned in that time that many moms of children with special needs deal with some form of post traumatic stress disorder, and I can certainly understand and imagine I do as well. It took me three and a half years to watch the short clip of my daughter being born, and it was only because we were compiling information for neurology.

I still can't find the words to describe what happened in total. Tears still well in my eyes when I think about the full five minutes it took my daughter to breathe after they pulled her from my arms. The haunting silence of a labor room with a baby that isn't crying is something indescribable. A full ten minutes passed in that silence before she cried out loud and our real journey of parenting started.

Now, four and a half years later, we have a joke around the house about the days, weeks and months that followed. It started with Luciana asking us a few months ago what she was like as a baby. Off handedly one of us answered, "You just cried and cried and cried unless you were getting mama milk". That was entirely the truth of it. We had a baby that screamed, constantly, in Aleut if you will, and nothing seemed to help.

So many people disbelieved us. Doctors said it was any number of things, colic, fourth trimester, indigestion, or just a "normal" baby that wanted to be with her mama. None of them were there when we held a screaming newborn for hours. None of them were in the car when we couldn't go more than a few blocks because her screaming was so incredibly painful to hear in a closed space. None of them were there, laying flat on their backs with a sleeping infant on top of you in bed, because that was the literal only way she was comfortable.

A few years ago I met another mama of a girl who had CP, and the one thing we shared was that we had the most incessantly crying children when they were younger. That, we gathered, was due to some amount of pain they must have been feeling at the time. It made perfect sense to me, their bodies weren't doing what they wanted, all was new, uncomfortable and frustrating.

This week though, with the knowledge that my girl likely had a stroke at some point, I began to look into pain related to strokes, and the flood gates opened.

"Stroke Pain- https://stanfordhealthcare.org/medical-conditions/brain-and-nerves/chronic-pain/types/stroke-pain.html
A stroke keeps blood from reaching the brain and leads to brain tissue damage. About 10% of people who experience a stroke eventually develop severe pain that is called post-stroke pain, central pain, or thalamic pain (after the part of the brain typically affected).

The onset and character of this pain is highly variable. It can arise days or years after the stroke, can arise after a major or a minor stroke, and patients describe the pain they feel in many different ways including (but not limited to) burning, aching, and prickling. Many different body parts can be affected, including the face, arm, leg, trunk or even an entire half of the body.

Common characteristics are that the pain is constant (although there is also often an intermittent stabbing component), and is more likely to occur if the stroke occurred in the right side of the brain. The pain usually gets worse over time and can sometimes be aggravated by temperature changes or movement."

It all came together there. I knew she was in pain, it's just one of those things I've always known, but to know that there is documented pain that occurs after a stroke, and not one doctor thought this was a possibility hurt me to my core. We could have done so much more if they would have sent her for an MRI early on. If the hospital had taken her to the NICU, if we weren't sent home 36 hours after having her. All of it and none of it makes me so upset that no one saw.

So I'm writing this today, in hopes that maybe, just maybe, another new mom reads this, and it helps them. An infant crying for hours upon hours is not normal. Don't take no for an answer. Don't make the same mistakes I did.

Awareness

Awareness is a word that’s tossed around every disability community. We fight for awareness, we raise it, we pursue for more. But what about self awareness?

One of the most charged questions I read entirely too often is- “Have you told your child they have X?”

I of course, wondered what the “right” way to do this was. Is there a right way? Is it different for each child? Is there a wrong way?

Our diagnosis’ came late, so maybe it was different for us, but we didn’t have long to ponder this question, if even at all.

A few weeks after her diagnosis of autism, we sat down with Luciana and it went somewhat like this.

“Luciana, do you know what autism is?”

“No.”

“It’s a special way your brain works, and it gave you reading as a super power. Most kids your age aren’t reading like you.”

“Okay.”

“Do you know what cerebral palsy is?”

“No, you say it all the time though.”

“Well, it means when you were born, you were born with a boo boo on your brain, and it’s made it hard for you to do things like walk and run,”

“Does my brain need a bandaid?”

“No, you don’t need a bandaid, and it won’t ever get worse. But we know it might be tougher to do some things than others. But it’s also meant we got to meet some super awesome friends we would have never known. And have gotten to do thing we never would have.”

“Like what?”

“Like dance class, and meeting Miss Addie.”

“Yeah. That’s good.”

Maybe we got lucky, maybe we got out easy, or maybe it distressed her more than we know. It’s hard to tell with a four year old, even a neurotypical one. They don’t have words to describe their feelings, all too often, and have little in the way of past experiences to pull from.

That was almost a year ago.

Recently though, there have been little moments that stand out, that shows me that somewhere in there, she’s learning about the person she is, and how to navigate the world around us.

Today was our second day of swimming lessons. New things are always hard. More times than not, we meltdown half a dozen times before it gets fun. It’s just par for the course. We never push her to do things she doesn’t like, but we don’t let her give up when we know it’s just autism making things hard.

Her meltdown started almost right after walking in the door from school. We mentioned swimming and she started to lose it about how she didn’t want to go. Over and over she said she was scared, she didn’t want to go. I reminded her that she once felt this way about dance class, and school, and how it will pass.

Then she said something I never expected- “I’m just having a shy attack mama. I just need a little time.”

A shy attack. I couldn’t believe how succinctly and poignantly my four year old could sum that up.

So, we gave her time, let her chill out, tried to get her excited and I headed out with her for class.

When we got there, things were alright. We got there early, spent some time getting comfortable, changing, watching others. But, when it came time for her class she went into full meltdown. The kind that I see maybe once a year. It was bad.

Two kind employees came over and tried to do what they could, but sadly she just got more agitated. After a moment, I reminded her of her breathing, got her to sit across from me, and take some deep breaths. Red, blotchy, tear stained face and all.

She looked right at me and said, “I’m having a shy attack.”

I reminded her that it would pass and I never let her do anything that would hurt her.

Then, one of the girls approached her again, and introduced herself. What came from my daughter’s mouth next brought me to absolute tears with pride.

“My name’s Luciana and I have autism. Sometimes it makes me really shy and scared.”

Her conditions are in her records and I’m sure they “know” but lord, I watched the situation take a 180 once those words were spoken. Immediately they switched tracks, made the lesson entirely about her comfort. Took her in the pool room, sat on the bench, let her play with toys, and by the end of it, she was waist deep in the pool.

But the thing I find most powerful is that my daughter had enough self awareness to say, mid meltdown from hell, her best version of “I’m disabled and need extra help please”.

Every parent worries about how the world will treat their child. Every parent of a child who has a disability worries themself sick any number of nights. But once again, my daughter taught me all I needed to know about the subject, and that is, she is strong, she is brave, and she is tenacious. But she also knows how to ask for help, which takes humility and awareness that I didn’t expect from her, but I am so grateful for.

Choosing to be happy

Earlier this week, I shared a conversation with my husband and another who suggested we asked the question, “Why had I been chosen to be given this child”. It wasn’t a query to find blame, but to see the respect the universe had given us as parents to be given this special girl.

I thought about that for several days, and what really makes me up as a person. I realized at some point, I simply chose to see things differently. I chose compassion.

Compassion has empowered me to be happy much more than without it. Compassion changed my relationships more than I think I knew, making them much more cherished than they were before. I began to expect the best in others, not defaulting to the worst. That choice unburdened me from anger and resentment I didn’t know I had, and made happiness all the more possible.

I’ve asked myself a million times, why I wasn’t given a “typical” child. I was angry for a long time, both for my daughter and for myself. I was angry that the relationship my daughter and I shared was full of therapies and doctors. That we didn’t spend our time together in play dates and parks, but in clinics.

I was also angry my husband wasn’t going on the same journey. We were on significantly different parenting pages for a long time. He works long hours, and hasn’t been to even a third of the appointments I’ve been to for our daughter. Looking back, it was no surprise he didn’t understand why our daughter could have not only autism but cerebral palsy. His time spent with her was almost all doing “normal” daddy and daughter things.

My relationship with her was spent advocating, assessing, listening to people more knowledgeable than me trying to teach me to do the best for my daughter.  I turned into a determined mom, not only to help my daughter every way possible, but also to learn all I could.

Our relationship was completely bound to treatments and therapies. There was no other way around it. At some point though, compassion changed this.

Compassion helped me to understand the tantrums, the difficulties, and the confusion my daughter so often had. It helped me to communicate, to calm and to mediate the problems my daughter was facing. It also helped me to mediate the world around me. Disagreements with my husband became fewer, more engaged, and more focused in resolving than being right. Around me, I began to find happiness in helping others, giving what I could to brighten others lives. The simple act of giving soon began to empower me to a true happiness.

It’s all because of her. It’s all because *I* was chosen by the universe to have this special little girl. I have been entrusted for her, and just as much, I’ve been entrusted in the lives of those around me. It seems overwhelming to put it that way, but the truth of it is, I am capable. I am completely capable of loving instead of hating, of choosing communication over conflict, of assuming the best instead of expecting the worst.


I can, and will, do better for those around me.

Coming to terms, with terms.

There's no question that the journey of a special needs parent is one that almost nobody is prepared for. I wasn't. The thing I find most peculiar are the things that hit you, and make you worry and question. The things that seem so incidental, but are heaviest. The words that meant nothing, but now mean everything. Everyone's journey is different on this path, but for some reason, what hits me most are the words.

It started early on, being frightened of simple terms like Autism and Cerebral Palsy. Imagining our future with those words tacked onto us made me so frightened. Eventually, I came to accept that my daughter defined those terms, not the other way around. Autism didn't mean she'd never marry or leave our home and Cerebral Palsy didn't mean she'd never play on a playground. They were just words.

I know this, and I know that words shouldn't bother me, but yet they do.

It started a few weeks ago at a neurology appointment. I injured my back several months ago carrying Luciana. I'm not a strong person, but I'm also not one to complain, but it has come to a point where I can no longer carry her. I asked for a script for a wheelchair for Luciana, so that I could continue to take her places.

Immediately I questioned myself, did my daughter really need one? Our physical therapist seemed to agree, at least in the conversation my husband had with her. She didn't understand why she needed one. And that, made me feel weak and inferior.

But the truth of it is, she's only worked with my daughter for a few months. She isn't there when I have to rub her sore legs, or she can't go on any further without either myself or my husband carrying her. She isn't there when she screams as I put her in or out of a shopping cart, because she's just too big for it, but she doesn't have the stamina to get through a store. No one is, besides us.

Just like our parking placard, I feel so guilty and judged for this. So guilty and judged for needing assistance, and not pushing through. The truth I really need though, was right there all the time.

"Paraparesis", another scary word to read about your child, but it's right there, in black and white on the order for the wheelchair. Partial paralysis of the legs. That is our truth, that is what we live with, and I don't want to discount or disenfranchise the very real struggle that exists, and that we try to overcome every single day.

So in the meantime, I'm reminding myself that a wheelchair will open up the world to us, just like the parking placard did. It will make it possible for me to do more with my daughter. It will mean trips downtown in the summer and walks through the mall. It will mean long meandering days at the arboretum and trips to the pool. It means access for us, and I will not forget that.

Being the "weird girl"

The image of a "weird girl" is surely put down in any number of places with any number of definitions. Horse loving, introverted, band geek, reading too much, spending too much time alone, only talking to animals, the list goes on and on, and could for millennia. It seems like the definition, doesn't exist, yet it belongs in our collective lexicon as though it were in Websters for half a century.

I was a weird girl, seemingly from infancy. Some of my earliest memories are of my obsession with counting my My Little Ponies, reading Michael Crichton novels in second grade, and mummifying a chicken for my Gifted class. Super cool girl right there. I also remember my atrocious fashion, my inability to play any sports and let's just say I rounded out elementary in super fun, antisocial fashion.

Things sort of got better from there. In high school, I found some other mutants at table nine to hang out with and had a small, but good circle of friends. Its probably because high school is such a rebellious season of life, that we end up finding some acceptance for the things we are, but still, more times than not, I felt like the outsider.

 

College, well it was still better, but only because I went to a college run by mutants at table nine, and my love of discussing the finer points of Agnes Martin found good company. It was truly one of those magical places that you can't put into words that finds a way of defining you. Among the walls scrawled with glorious graffiti reading "Fuck gouache" and "Roast beef curtains", there was something in that space that allowed a person to thrive, and I still can't put it into words.


What all does this have to do with my daughter?

Thoughts are tangential this way, aren't they? Coming from this, that and the other direction until they make some seemingly obscure sense to our minds.

I was laying in a hot bath today, four in the afternoon. Around me I was listening to a Sofia Coppola soundtrack on vinyl, with a bath bomb claiming to never test on animals and a copy of W magazine a few months old when it hit me. I am still the weird girl, and while I've found some contentment with who I am, how can I be certain she will find it too?

Many of my peers and I are now learning due to any number of factors, that a good portion of "weird girls" actually have autism and were never screened properly for it. Being weird kind of falls into spectrum disorders for females, and it seems like certain things congregate this together for women in the 30-40 age group.

We are learning that our own maladaptive behaviors are actually medically based, and there were any number of reasons for our "weirdness" and for the things that define us. Autism.

So how can I raise a girl, who knows she has autism, and is proud of who she is?

I think back to my time in college, and the environment that allowed that to thrive. It was small, a few hundred in the entire school, and very open concept. We had work to complete, but it was open ended, and allowed for interpretation. We were graded harshly, one famous professor never gave As, because "Ain't nothin' perfect." and TC, lord knows I didn't ever deserve an A from you.



But it had structure in all the right ways, in the ways that pushed you beyond what you thought capable. It was your own self you were pushing against, to find the possibilities within you. Studio doors were always open, seniors didn't mind if freshmen wandered into their studio space at three am to share a beer. It was a beautiful, open collective where the sense of one's self was truly nourished.

I think about that a lot, and in the way I want our daughter to be raised. She's brilliant, but also disabled, and that's a fragile precipice to sit on. Always uncertain and never knowing, but still wanting to trust that intuition that burns so strongly. I get it, because it was me too.

So for now, our home is full of life, full of things that make us happy. We embrace her ideas that fill her with enthusiasm, and nudge her otherwise when she needs it. Our home is full of character, art, music and any number of other weird thing, because we are weird, all three of us, and it is a beautiful and genuine place to be, that so many are never brave enough to find.




-For the record, TC was a great man, and you should read about him. 

I am loved

I am loved. The simplest, yet the most complex affirmation anyone will ever hear or yearn to hear. What it means is complicated, what it defines even more so; yet, we all need this to live a fulfilled life.

As I’m in my fourth decade of life, I’ve done a lot of thinking about what my purpose is. In the larger picture and in the small as well. Who I am to those around me, and what impact I hold. I also think a great deal about the tiny person I’m helping to raise, and the immense power my words will mean to her.

Our internal voices are developed so deeply, that as adults many of us know not where they even came from. It’s a miss mash of so many different positive and negative things we have heard in the years that came before, and likely, very few can ever be pinned down to something specific.

That voice holds a great deal of power, one that defines us every moment of every day. It is the only friend or enemy that follows us wherever we go. It creates esteem or depletes it. It enables us or discourages us. It is the source if both success and failure. Yet, do we truly give it the credence it deserves?

How does this relate to mom life? Raising a tiny human? It starts with those Facebook things that get shared all the time. Claiming this and that about motherhood and children with cute pictures that look like there was way more time put into them than your kids dance recital. But in there is some truth. As parents, our words form our children’s inner monologue. It makes perfect sense, as their first and sometimes only source of daily contact, why wouldn’t it?

The negative traits we see get amplified, and the positive do as well. But, what about all of those other words we say too? The words we say to ourselves, without thinking?

It’s more than a mama that laments on her weight or a dad that’s disappointed in his job. Your entire outlook defines your child’s future and we hardly begin to consider this when they set the sweet bundle of joy in your arms at the hospital.

No one prepares you with the words, “take care of their self esteem, because when they have their midlife crisis, you’re going to be to blame.”

That’s the furthest thing from anyone’s mind. And understandably. But what we as parents have the capability to know more.

Our generation is breaking the stigma on mental health, first and foremost, and normalizing the troubles that nearly everyone has in their lives. Chances are, you’ll have anxiety or depression at some point in your life. What we can do as parents is understand that the same is true for our children.

My world opened up to this thought as Luciana faced her first social struggles at school. Autism made things difficult to process, but it also gave her this innate, sometimes repetitive to a flaw, desire to work out social situations through role play.

Countless days after school I rocked her, sobbing through a meltdown, slowly unraveling the ball of mixed up wires that autism tangled up for her. We’d talk, and talk and talk, and eventually it eased. We would find it easier to understand things that happened, and find ways to express how it felt, if only to mama.

Slowly, the world started to make sense.

I could have punished, or ignored this. Written it off as bad behavior or bad parenting. But it wasn’t, it needed me, and I had to learn from her, how to fix my own ball of wires along the way. They don't make a book for this type of thing, and it's not talked about between parents. But it's there, and we need to recognize it.

Just a few short weeks ago, I started hearing Luciana do some self talk from the other room. “Calm down Luciana, it’s okay.”, and that sort of thing. It took a year, and change, but we got somewhere tangible. She was using self talk, as a skill, to ease her feelings and make sense of it solely.

We have important, confusing jobs as parents. We will never get it all right, but together we can make a generation that will improve upon what we can give them, with tenacity, ingenuity and empathy.

Journey to beauty

For four and a half years, I've struggled to find myself as a mother. Struggled to define my role, my individuality, and accept how motherhood has changed me. The truth is, I still don't know. I have no idea what defines me, only what makes me strive for more; Luciana.

My life changed completely four and a half years ago, and transformed into something I can find so much beauty in now that the lens of nostalgia can be used. So much has been caught up in the day in and day out, that sometimes I couldn't see what was really in front of me.

Days upon days in therapies, with few supports made me strong. Every time I wavered, I looked to my daughter, and knew that if she could do it, I could.

The truth is, Luciana is the one who has it all figured out, and I am just lucky enough to be her mom.

More and more, she defines herself as a tenacious girl, who won't be stopped by anything. She can make friends with anyone, can blow all expectations out of the water and most of all, she can make just about anyone smile. She's more empathetic than even the most emotionally intelligent people, and finds a way to comfort just about anyone.

I think its because she's known no other life, and known nothing more than to trust herself. Her feelings are pure, unmarred by society, and that is something I know as a mother I need to protect. She will of course, learn disappointment, distrust and any other number of feelings that help anyone to build strong boundaries. But now, this is her gift, and she uses it beautifully.

It took me time to understand that though. My journey as a special needs mom, or the mom of a disabled child, has been rocky, like so many before me. Luciana is our "one and done" child, we know no other life, just like her. What is different though, is what society and community told me being a special needs mama meant.

When we got her diagnosis less than a year ago, I desperately tried to connect with other mothers, trying to understand what our future meant. So many communities focused on the trials and tribulations (which are understandable), and I fell into this pit as well. For months, I was saddled with the thoughts of what my child couldn't or wouldn't be able to do. My days focused on hyperanalizing doctors, therapies, play routines, trying to figure out how to "cure" my child from the trials that plagued her.

All this did was make me swim upshore against a current that was destined to end me.

I can't tell you what changed, a date, a time, a place, what I read, or what I didn't read, but something changed and I started to look at my daughter as she was. I accepted her limitations, and congratulated every time she surpassed them. I accepted her as she was, frustrating as it sometimes was, I just stopped caring about all of the things I thought defined her.

What defined her was much more than a symptom list or diagnosis, what defined her was the parenting her father and I give her every day, along with the tiny bold little person who we were called to parent.

There was such a drastic change for our relationship. More and more, we agreed on  things, chores were done, space was made for feelings and we became synchronous as a mother and daughter. My expectations of her changed to only include things like, being kind to others, being polite, helping out with things that we as a family do, and learning to define and speak about her emotions. When I merely expected what was required of a tiny human, it all made sense.

I've doubted myself as much as any other mom, and I get it wrong a lot too. But every time I do, I learn what I have done through the tiny person following me around. Her reaction, her words, her offerings of kindness in my weakest moments have made me see the world in a light I can't put to words.

So, this is us, Luciana and I. I'm not going to get things right every day, and I'm not going to sugar coat when things went wrong, but this blog will focus on the positive. It will see the little moments of beauty and document them, so that one day, we can look back, and see the beauty that was there the whole time.