1,051,200 Minutes

It's 2 years, in case you were wondering. More importantly, it's the amount of time that it took a team of the best pediatric specialists in the world to finally name what happened to my daughter. I decided to create this post, because I think most people are pretty unaware of what a long process obtaining a diagnosis can be. Especially when things can't be clearly tested for with a blood test, can't be clearly seen through facial of bodily features, things that can have varying degrees of severity, present differently due to comorbid conditions...etc. People don't realize how messy this can be. They don't know how many times I've cried myself to sleep after being told my daughter probably has X,Y, Z....which is horrible, but then ended up not having. It's emotional. And if you don't follow up and stay on top of it, no one is going to chase you down. They'd be content forever to say "Lola has muscle weakness, Lola has seizures."

People ask for updates and it's hard to remember who we updated on what. So I get a lot of "I thought you said it was this...." Well you know in January we were told that it was that. So let me catch you up to speed. And people look at you like, "How is it you didn't know....?" Well that is the reality of the diagnostics game. It's ever changing, that is until it isn't.

So let me share with you all the possibilities that were thrown on the table: Intrauterine Stroke vs Stroke at 4 months of age. Cerebral Palsy. Paroxysmal Dyskinesia. Dystonia. ITA Disorder (mini stroke), Epilepsy, Chiari 2 Malformation with Motor Planning Dysfunction, Internal Tibial Torsion with Spastic Reflex, Genetic Disorders....A,B,C,D.E and Pediatric ALS (arguably the scariest thing I've ever heard). And each one of those doctors believed what they were saying.

So believe me when I tell you that these 1,051,200 minutes of Lola's life have been exhausting...emotional...defeating...maddening...and more. When everyone who is the best at what they do, from the best children's hospital in the world, all disagree....what do you do? And every time we thought we were sure, we'd update our friends and family only to be told...."No, it's this."

Diagnostics is a puzzle I never appreciated until I participated in it firsthand. It's not one or two or three doctors weighing in. It's one doctor who weighs in, followed by another doctor, then the two of them get together and refer to another specialist once they've come to an additional question. You go to that specialist who weighs in, then gets together with the first 2. Then the three of them, generate findings and additional questions and call in the 4th and so on until you have 3 Neurologists, an Orthopedist, A Muscular Disorder Specialist, Epilepsy Specialist, Cerebral Palsy Specialist, Geneticist....all working on the same team. And they don't just say...hey it looks like X, Y, Z....no they painstakingly rule out all those "could be's" from the list above.

In these 1,051,200 minutes, I've recounted Lola's entire history more times that I can count. I've taken more pictures and videos as evidence, taken my daughter to more appointments and tests and procedures and repeated them. It's like a shampoo bottle, "Wash and repeat." And Lola, my fierce girl, has dealt with it in a manner that truly fits all the nicknames we have for her; Wonder Woman, Beast, Fiery Pants Cole.

And all those minutes lead you to what you hope is your final stop on the diagnostic express, an answer. So know that when you ask me about Lola and what she has, what happened to her and I say, "Lola has Mild to Moderate Hemiplegic Cerebral Palsy with Secondary Epilepsy due to an acute left ventricular intrauterine hemorrhage." That a lot went into that answer. And yes in layman's terms it means that Lola had a stroke while she was still developing in the womb, the static brain injury resulted in cerebral palsy which in Lola's case also includes seizures. And if we spoke 6 months ago and said "they are worried it's ALS or Paroxysmal Dyskinesia (Both just super scary options." That I wasn't confused. I just didn't have all the puzzle pieces in place yet. That two years of testing and data collection, two years of seizures, mini strokes, occupational therapy, physical therapy, leg brace fittings, MRIs, EEGs, blood tests and so went into this puzzle. Two years of combing through prenatal records, birth records and pictures...all had to fall into their own spaces.

And honestly, for the first time in two years, I'm comfortable with the answer. It finally feels true. Yes this happened to her. And this is what is left as a result. Now that I'm at the diagnostic finish line, I have so many other things I want to say and resolve....like how I was treated while I was pregnant with Lola....about her first few days of life when we were told "babies feet often curl in because how they sit in the womb." How instinct and maternal knowing was brushed off time and time again, until the evidence was glaring. The apology I would like to hear from the person who might very well be responsible for what happened to by child. The one I'll never hear. But those are separate posts. And while I'm 100% certain that Lola deserves that apology, I saw at least 20 children, more impaired than Lola, that need to hear it more than she does.

I don't have a nice wrap up for this post. I'm listening to Lola snoring in her room and realizing I've let her nap too long, so....the realization that sleep is going to be rough tonight is setting in. But maybe I do have a wrap up, because just now...typing that very mundane normal thing, it hit me that Lola's life is way more typical than atypical. Like any other two year old on the planet who has napped until 7 at night, she will be up terrorizing us well past an acceptable hour. Good for her really. I hope she has blast doing it.

Insert Witty Title Here

I've been scolded recently, very recently for not being more cheerful about the life I've been given, more specifically...we as a family have been given. I'd love to say something profound, but this at the core is not profound. People survive, cope, and thrive in many ways. My way is just not as sunny as others.

Now I know, I do....I love reading blogs and posts from SN parents that are super "Yay my kid" and "I wouldn't have it any other way" I have a few myself that come a smidge close to that. But while those are lovely and leave warm feelings and happy tears for all that read....that isn't my reality.

People assume that this means I am weathering my life with less Grace than others. And I assure you, it's not that. Because I believe that Grace includes transparent honesty...even if that honesty doesn't leave people wanting to sing "You are my Sunshine" and sit around pretending the disabilities no longer create road blocks for children.

No. Having a fierce outlook, not what others perceive to be Grace, is what gets a person ahead when road blocks are everywhere they look. Will. Will to overcome....even if it means you are not sunshine and roses about it. I'm not sunshine and roses, and neither are my children. I'm okay with that.

While sunshine and roses posts make people feel good, they do not achieve the goal I have in mind when I post about my life with these children, the goal of helping other SN parents not feel so alone. If everything feels like shit...because your reality is shitty and all you come across are people telling you how happy you should feel about it....well, that's pretty isolating isn't it? So not only am I in hell, but it's also a hell built for one? I don't think so. As I see it, SN parents are already isolated and marginalized by society, they don't need to be marginalized by other special needs parents.

And if you think it's untrue.....join a mommy forum and bring up a topic specific to SN parents, watch as the pitch forks come out. The truth is, everyone wants to say they are open minded, inclusive, compassionate, understanding....but just mention Autism...accomodations....developmental delays and watch the Neuro typical brigade make an ass out of themselves. No. People get enough of that, they don't need it from me as well.

So it's a new year and I should be posting something deeply introspective, upbeat, and blah blah. But I'm not. Because my reality is that home with my two kids...it's sad and it's hard. Yes we are happy, but it's bittersweet and it's wicked hard work. And then I go to work, in a town filled with sadness, everywhere you look. Poverty, homelessness, drugs....death...neglect, sadness. And while there is a reason filled with Grace, that I am there. A desire to do the most good with my specific talent. It doesn't make it easier. It's a hard life. And I'm not all "Happy Happy Joy Joy" about it. It's sad. But you'll notice I never said it wasn't worth it. It is. So are my children. Try not to confuse that emotion with happy because they are not mutually exclusive.

What is it anyway?!

So many people have asked over the past 12 or so months, so I've decided to Answer. It's asked in many ways and the asker often doesn't realize that the question can come off as a dismissal. What's wrong with her!? She looks fine! Or some variation. She is fine as it turns out. She is amazing. But that isn't the point. Special needs parents often feel like they need to defend themselves and their children for being honest with the world about the struggles they live with. I'm not under the impression that people mean their questions that way, just disturbed by the trend of people trying to normalize everything because it is too hard to see children struggle. It is this attitude that keeps people from seeing children suffering and dying from diseases....diseases that have underfunded research efforts because people would rather buy pink and say they did their part, than admit that children suffer just like adults.

Anyway, here is an answer. And when people ask me from now on, I'll refer back to this post and attached picture. What is Hemiplegia? OMG children can have strokes!? She looks fine, you're worried for nothing? Why would you have her brain scanned!? But she's so cute....... I've decided to answer the only appropriate question. What is Hemiplegia:

Scientific Answer:

What is Hemiplegia?

Hemiplegia (sometimes called hemiparesis) is a condition that affects one side of the body (Greek ‘hemi’ = half). We talk about a right or left hemiplegia, depending on the side affected. It is caused by injury to parts of the brain that control movements of the limbs, trunk, face, etc. This may happen before, during or soon after birth (up to two years of age approximately), when it is known as congenital hemiplegia (or unilateral cerebral palsy), or later in life as a result of injury or illness, in which case it is called acquired hemiplegia. Generally, injury to the left side of the brain will cause a right hemiplegia and injury to the right side a left hemiplegia.

One child in 1,000 is born with hemiplegia, making it a relatively common condition. About 80% of cases are congenital, and 20% acquired.

You may also be told that hemiplegia is a form of cerebral palsy, a descriptive name for a wider group of conditions in which movement and posture are affected owing to injury to the brain. These conditions are lifelong and non-progressive i.e. they do not get worse, but they may look different over time, partly because the child is growing and developing.


Mom Answer: Hemplegia is a little girl who loves to dance. She tries to twirl and whirl with characters on a tv show and continues to fall. At 19 months this little girl already knows that there is something wrong with one side of her body. She glares down at her bad foot and points with her weak arm and screams "Foot Dumb!" Before collapsing into sobs.

What is Hemiplegia:

And yes she is cute. She knows that already. But Lola doesn't strive to be cute, she is spicy and wants more than that. She strives to run, jump, dance and get dirtier than her brother....so dirty she has hard earned the nickname "two tub Cole" Children aren't just adorable, they are small people, with hopes and dreams like the rest of us. Sometimes they are heartbroken, sometimes they get down...they have good days and bad days and they have real problems. Yes they are cute, but seriously that is just genetics encouraging us to keep going with weeks of no sleep and through the terrible 2s...3s....4s....it goes on an on.

I don't usually get all up and arms about these things. But then I think, there are children whose problems are way bigger than either of my children's and we see those kids get ignored by society all the time. It's time to stop turning a blind eye and doing something. Even if it makes you sad.

The Luckiest

The Luckiest. My favorite song by far. I always thought of it as a love song between a husband and his wife...soul mate type of deal. Have you heard it? No? Go to Youtube right now, listen. It's worth it. Love, having someone, be it a partner, friend, sister, someone who you know defines and shapes your life in a way that if they were gone, that life would be unrecognizable.

There is a part in the song that talks about what ifs. Like what if I was born 30 years before you, we never met and one day you walked by me on the street....would I know that I had missed out on everything about you that makes my life so amazing, special, unique? What if you belonged to someone else? What if my sister had different parents? What if I went to a different college, Phill stayed in the army and was killed over seas....and I never had these children? My babies. These kids who keep me up at night, worry me, these two amazing special needs, beautiful children. What if?

And I spend a lot of time thinking about our bad luck. Death, Miscarriage, Autism, CP....and the things that came before that. A failed adoption, fostercare, a very lonely and deprived childhood. So unlucky. But really, what if those things were different? Would the things that make my life so beautiful still be mine?

Like my son, with his big green blue eyes that I would know anywhere. And my little brown eyed amazing girl. "cause in a wide see of eyes, I see one pair that I recognize and I know that I am the luckiest" And as corny as it is, I am still, Autism, CP, PID, seizure, stroke....I still am, the luckiest. Because at the end of the day, I would never want to live my life without this husband, not just any husband, but this one. This little boy, not any little boy, but this very boy, this imperfect boy and everything that makes him who he is. He is mine. And if I wished away Autism, maybe that life would have been easier, but maybe this little boy would have been given to someone else. And that life....I don't want to know that world. The one where I may pass a little boy with blue green eyes on the street and wonder if I knew him, just for a moment and then moved on. That little boy, everything that makes him who he is...belonging to someone else. I am the luckiest.

And this little girl, this little girl who keeps me up at night worrying about strokes, developmental milestones, shrinking growth plates, PT and orthotics, sedated MRIs and brain damage. What if I wished the CP away and that life was easier? But what if this amazing little girl belonged to someone else? What if in her place I had a different girl and saw my Lola someday at a school play, with her fluffy owl hair and her warm little brown eyes, her spark, her smile and she belonged to someone else? Would I know what I was missing out on? The joy of being her mom. Because I wished away the hard part?

And that life is unrecognizable to me. Those what ifs.....it's nice to think....but I don't want them. Because this imperfect life, it's too much to lose. It's part of me, they are part of me. That past that sucked, but it lead to these children. And they came with baggage. But I'm learning, everything worth having does come that way. And We, Phill and I. Michelle and Kris. Our little family. We really are, Autism, CP, Dyslexia...We really are the luckiest. Because look at what we have. And those four sets of eyes, I'd recognize them anywhere, even if the what ifs happened, I'd always know, there would always be a void and I'd wish for this life, with these little faces, these gorgeous souls, and everything this life entails. Because really....just look at them. Then try to tell me that I'm wrong. But you can't can you?

One by One

When I was in 7th grade, I discovered that I was a singer. I loved to sing and hell I was fairly good at it. I participated in several singing groups, competed in competitions, at an otherwise really just awful time in my life, singing brought me a lot of happiness. It also gave me something to look forward to. There was a time, when college came around that I thought I'd go to the conservatory, I'd continue to sing, study piano...maybe keep up with the clarinet. But I decided to be a teacher instead and I stopped singing. Funny thing about the voice, that ability fades if you don't use it. But life got in the way, there was no time for joining a choir, friends, life, family....things got hectic, grad school happened, I took in a teenager, infertility, loss......the roller coaster of life. And I let it go. It was a major loss. Part of me gone that I still miss. Every time I sing, I cringe...it's not what it used to be.

There was a song that we learned in chorus in 7th grade called "One by One". I remember how much I loved it then, not for its ease on the ears, but the words really spoke to me in a time of chaos and turmoil. It even came complete with a back story. It went something like this. A mother was searching for a wife for her son. There were three village girls in the running and she just couldn't decide who was best, so she decided that the best way to go about making sure that she chose the best person for her son was to put the girls to a test. She gave them each a large ball of tangled strings. The first girl tried to be the quickest to unravel it and made the ball more tangled and more of a mess. The second girl gave up too quickly and decided it just couldn't be done. But the third, sat down and untangled the ball one string at a time. While she untangled she sang a song about solving problems one thing at a time. How even when things are stacked on her horizon like a looming mountain that seems impossible to climb, she had to just take one step at a time. There was mail to be answered and friends to call and not enough time, but she had to call one friend at a time, answer one letter at a time, fit in one thing at a time until the pile became a hill and the hill became a plain. Until life was manageable. Of course morale of the story..she was chosen as the wife. She'd passed the test.

I've failed it.

Anyway, this song has come back to me several times in my life, but I find it more and more on my mind as my life becomes a tangled hot mess of obligations. ABA, Speech, OT, EI, PT, MRIs, EEGs, Work....the mom to two special needs children thing. I've had to compartmentalize my life in order to meet my obligations, stay organized, schedule every minute. It's overwhelming. I've split my life into categories and some of them have been more neglected than others. Not because I want to, but because I have to. Recently this has lead to some real sadness in my life, a loss I'm not sure my heart is ready for. I'm so sorry friends and family. I'm not perfect and this mountain has overwhelmed me. People are always quick to tell me how much grace I've weathered life with, but the truth is, there are some things I'm failing at royally. I don't know how to be CP mom warrior, Autism mom to the rescue, reading specialist in a level 4 school district with endless energy.....and still be an awesome friend, wife, sister.... it's a huge mountain. Little things that used to bring me joy have brought me to tears.....Christmas cards? Huge undertaking, but I couldn't bring myself not to reach out in that little way.

I keep saying the lyrics over and over and over again. "One by one.....green by green, red by red" But I'm failing miserably. And instead of gaining back my life one by one, I'm losing things one by one. And it's breaking my heart.

The consultant that my school district hired to revamp some of it's programs has a mantra "find what is right in what's wrong" I'm trying. I'm really trying, because this seems to work for her. I want it to work. But the loss, it's overwhelming. Not only have I lost and rerouted my hopes too many times, but now I'm losing people. Not to death, but to the overwhelming taxing that comes with being friends with someone like me, who has problems that overshadow everyday problems, joys, anything other than cerebral palsy, autism, primary immuno deficiency...seizures. There is little left of me to relate to anymore.

While it breaks my heart that the answer to a hard life and loss is more loss, that the natural consequence to a hard life and problems I never asked for, is more heartbreak... It is what it is. I've heard other special needs parents talk about this and always considered myself very lucky. I don't have a lot of friends, I chose mine carefully and I love the hell out of them. I never thought this would happen to me, but it has. I had been warned. It's too hard foe most people to be the friend who always needs to be the support. I tried not to be the friend who always asked and never gave. I failed.

I'll be honest when I'm feeling bitter, I think that I'd like a chance to be the friend on the listening end. I think I could rock the hell out of that. I could be that friend if I didn't have Asher and Lola, I could be really awesome at that. But we each walk in our own shoes and no one is without their own hell. And life isn't divided into people with heartache and people without heartache. At the end of the day all that I can keep coming back to is how isolating this life has become and how alone we all truly are at the end of the day. Instead of sorting through problems one by one, it seems that we lose things one by one.

Dreams, Hope, identity, love, friendship, living without fear, happiness. While I can't remember a time I was happy as a whole, I've had moments of happiness, even in my darkest times. Those moments are vivid in my memories and I replay them often. I have to wonder if any of my current happy moments will be that bright later on. Dear God I hope so, because they are fewer and not as intense. They are fading one by one.

But here is what is right about what is wrong. I sing when I'm sad. I think it is because singing links me to happy memories and times. I've started singing more to my children. I even find myself singing in the shower again, singing in the car. I'm sure I look awesome to other drivers out there. I'm reliving days when I thought I'd run away to Broadway and sing in Les Mis. And my kids love it. Maybe these will be my vivid happy memories later. Or hell even if they aren't for me, maybe they will be for Lola and Asher. Even if that reality is colored differently than it is because of it. I'm okay with that. Anything but more loss please. I'd love to get to a place where I can start adding things back instead of deleting them.

I'd like to be Holly again, not just the person who loves Asher and Lola so much that being their mom is crippling sadness. I'd like to be the awesome sister and friend and wife that I used to see in the mirror. I'd like to be that singer, the girl who played beautiful songs on the piano, the girl who got lost in stories, who could easily laugh and engage in silliness that would make a 5 year old jealous. I'd like to be carefree. I'd love to have something to share in conversation that doesn't have a damn thing to do with autism, cp, PID, reading disabilities. But this is my life. And until I can get through this mountain, one little thing has to be okay. So for now, I'll keep singing to my kids. They have to be enough. Even if there is nothing else. Look for the good in the bad. Just keep looking.

One By One (author uknown)

Sometimes my life is like a ball
of mixed up colored string
So full of knots and tangles
I just can't do a thing
And when I go to sort it out
I realize that I'm
Gonna have to take it
One string at a time

Chorus:
One by one, each shining colored thread
Blue by blue, green by green and red by red
Til the colors come untangled
And the knots are all undone
One by one, one by one

The mail I should have answered
The friends I ought to call
The gifts I haven't given
I just can't do it all
It lies on my horizon
like a mountain I must climb
And I'll have to take it
One thing at a time

Chorus

The songs I haven't finished
Unwritten and forlorn
Are stacked on my piano
Just waiting to be born
The tangled strings of melody
The ragged scraps of rhyme
I'll just have to spin out
One song at a time

One by one, each shining colored thread
Blue by blue, green by green and red by red
Til the colors come untangled
And the knots are all undone
One by one, one by one, one by one.

Three Little Birds

I've been having very vivid dreams lately. The kind of dreams that you wake up from, not sure if they really happened or not, having sworn you could touch, taste, smell....feel pain. These dreams weld themself with reality in clever small truths that make them hard to shake when morning hits. There was a time when I had these dreams about Elisabeth. In the early months after her pregnancy ended and we were left with nothing but the knowledge that life could have been so different. I dreamed a lot then of what that life would have been like, with her in it, what our family would be. And sometimes I was left with that same feeling when I woke up, often wondering "did that really happen?"

5 years later right after Asher's diagnosis, I had those dreams about him. In my dreams he was older, sometimes severly disabled (thank you stressed out brain) and sometimes looking just the way my heart hoped he would. But they were real. I swear I could remember what it felt like to hug him and what his voice sounded like. My happiness or sadness in those dreams...so tangible.

It's been a while since I've dreamed that way. My brain it seems, only likes to torture me when life is not going the way I had hoped, when I'm struggling to remain in control of my emotions, when I'm filled with a sense bitterness. And those dreams have started to come back, which makes sense because I'm feeling really bitter now.

These dreams are about Lola. And I have to back up before I go and just talk about her for a minute. My Lola. My daughter. There is something so so special about having a daughter. I love my son of course and I always wanted boys. I was unprepared for how this little girl would steal my heart and the connection I would feel being so different than the one I have with my son. My little girl. And she is amazing. She is the sweetest, easiest baby. She is a love. I have no complaints. Lola does nothing but make our lives richer, brighter, happier. She is amazing.

So it's hard to say. It was hard with Asher too, learning how to say "My son has Autism" was pretty hard. So I'm not surprised that I'm fumbling over this and feeling awkward about it. So I'll just rip the bandaid off and say it.

My daughter has Cerebral Palsy.

There I said it. My Lola.

I remember back to when I was still pregnant with Elisabeth but we knew that things were going to end badly. We were just waiting for her heart to stop, just waiting for things to end. I used to sing Bob Marley's "Three Little Birds" to her over and over again. "Don't worry, about a thing, cause every little thing, is gonna be alright" I mean of course we knew it wouldn't be alright, but it was comforting.

I sang it again to Asher as an infant when he was in the ICU and first DX'd with PID and EoE. I leaned over his clean room crib and sang it over and over and over and over again. It went on to become our mantra. Every battery of testing, every blood draw, every procedure. "Don't worry, about a thing, cause every little thing, is gonna be alright"

And now I've started singing it to Lola. She was fitted for her AFOs (Ankle foot Orthotics) this week and all during the appt I sang it to her. She did awesome and she smiled the whole time I sang. It was comforting. Everytime she curls her foot in and falls because it can't support her body, I sing it to her then too. And a few times, I've caught Asher singing it to her. Three babies, the same song. I guess there is some comfort in that.

My first vivid dream of Lola was deep and sad. I dreamed she was around 10 and for some reason even though she looks so much like Phill, in my dream she looked just like my sister Michelle had at 10. She was tall and thin and looked like every other ten year old on the playground, except she was dragging her foot behind her. Off in the corner on my field of vision, was a gaggled of mean girls making fun of her. And bam, in my dream I could taste tears. So real.

And the unfairness of life just sort of rolls over me and I think to myself. Multiple miscarriages, 3 babies....1 dead....1 autistic....1 cerebral palsy. I mean what the actual fuck?! And people offer those same awkward comments that are meant to comfort

"God only gives us what we can handle" Thank you God for the vote of confidence.
"God doesn't make mistakes" Oh....so then God hates me.
"Everything happens for a reason" Nice. That makes everything better.

When really sometimes bad things just happen. For Elisabeth it was a lack of progesterone, a bad heart, and a mother who couldn't stay pregnant. For Asher is was a cruel roll of the genetic dice and for Lola, a stroke that probably happened in utero or in the first few weeks of life. And those things suck, but they just happened. We weren't chosen and we are no better equiped to deal with these things than anyone else.

A couple nights ago I was rocked by a dream that was more real than any dream I've ever had in my entire life. It has taken me few days to really process it, because seriously, I can still feel the breeze on my face from it.

I was sitting in the garden Phill and I plan to grow for Elisabeth, under the cherry blossom tree we have picked out for her ashes. The breeze was warm and rolled over me in comforting waves. I was humming to myself and running my fingers over a blossom that had fallen from the tree. I heard the chirping first and then my eyes focused in on three little fluffy yellow birds. And they looked so familiar to me. I knew. I know these little ones. They are part of me. One fluffy little bird with a feather on the top of his head that stuck up straight, one little bird who hopped around on one leg, and one bird paler than the others, but fluffier. They chirped and bounced around. And I sang to them "three little birds, brisked by my doorstep, singing sweet songs of melodies pure and true" And two of the little bird changed. The one with the feather on his head turned into Asher and the sweet little bird hopping on one foot turned into my Lola and they sang with me "this is my message to you you you...."

And I sighed. I hugged them and I ran my fingers through one fluffy dark blond head of hair and then one fluffy brown head of hair. We laughed and hugged and I told them about Elisabeth and her garden. I said "I wish Elisabeth was here, then everything would be perfect" Then Asher took my face in his hands and said "But Mama, she is right there" and he pointed to the third little bird, the pale fluffy one. And I knew. She was there.

And my third little bird bounced over to me and jumped into my hand and whistleled "Don't worry about a thing, cause every little thing, is gonna be alright" and then nesteled herself down and went to sleep as a stroked her fluffy little back.

And then of course I woke up, feeling like I had just been hit by a truck. So real. So bittersweet. But I'm choosing to take my brain's message and run with it "Don't worry, about a thing" So I'm not. I'm looking at the bright side of the hand we've recieved and telling myself over and over again, Asher's autism is high functioning and Lola's CP is mild. They will struggle but every little thing is gonna be alright. And I have to believe that. I do. Because it is true. There isn't any other option.

Chutes and Ladders

When I was little I loathed the game Chutes and Ladders. Every time I began to progress forward, that damn slide would come up and bite me in the ass and send me spiraling back down to where I started, or worse left me further behind than ever before. I've always hated that fucking game. And yes I just swore. That is how strongly I feel about it. The worst part of that game is that there are more slides than ladders, why?

Much like the game, life with Asher has been an almighty struggle up those damn ladders, just to be tossed back down again. Sometimes the regression is small, sometimes it brings us back further than my mental wellbeing can handle.

We're having a summer of slides. As in, we're really struggling with Asher. I know this is part of it, but knowing that, never makes the sliding backwards easier. The knowledge that the regressions will happen, looms over you like a dark cloud, even in the good times. It is always there. You'd think that it would prep us for when the whole sky turns grey and opens up in a cold wet downpour, but no, we are still cold and wet.

The ramp up to this happened slowly. It started with Lola being born and the end of the normal school year. We were away from speech, OT, and Farm therapy for a while. School closed for the summer and a very abridged summer school began. And Boom! Good bye consistency.

You could feel the pressure building, so much so, that Phill and I actually fought over going to the fireworks. From the first uttering of his diagnosis, I have sworn up and down not to hide Asher from the world and to go out of my way to include him in normal life....which includes celebrations. I'm slowly ebbing away from that resolve, but dammit Asher deserved to see the fireworks.

So I brought him. Phill stayed at home with Lola and I brought my little guy to the fireworks, knowing full well that the fireworks by nature of what they are, are a sensory overkill wasteland waiting to happen. I brought him anyway, because I am too proud not to and more selfishly, there is a part of me that dreams of watching my child experience things as a normal child would, maybe this would be his moment.

The reality of how this all went down still plays through my mind. We met my sister, brother in law and Asher's cousins. The kids were all really excited. Both boys were overstimulated from the start. Like a real cheapie, I stocked up on glow sticks and swords from the Target $1 section so we wouldn't have to buy a $15 substitute when we got there. Of course, swords for the boys, hindsight really, just a bad choice. Because those damn swords.....I was poked in the eye twice, Michelle once, and Kylee jabbed in the side of the neck. Bad choice Mama, bad choice. I suppose they were marginally better than the seizure causing, light fests in a tube that other children were wielding...but I digress.

We got there early, because otherwise, NO SEAT FOR YOU. I hate getting places early with Asher. The anxiety caused by anticipation on both our parts is just agony. I was constantly aware of Asher's place in space, but part of my mind I allowed to wander and scope out the scene. The scene in front of me of other children, sitting on blankets, patiently waiting for the fireworks to begin, chatting with siblings, laughing with parents. Asher?..... shit I blinked, where the hell is he?!? Asher was so stressed by all the people, that I had to take him to pee 4 times in the 30 minutes we had to hang out before the first boom lit up the sky. 4 Times. And no we couldn't wait in the crazy long line for the porta potty each time. People in line rolled their eyes when I walked by them for a third and fourth time, leading my child to the wooded area so he could pee. Suckers, you've been in line for 30 minutes.

And this is pretty much how it went down, Asher overstimulated, me holding him down to calm his body. He needs to pee. We come back to the blanket, he is calm for two minutes. He gets up and runs off, I find him, he has to pee....rinse and repeat. It was exhausting. And meanwhile, I am acutely aware that I'm one of the only moms there having to do this. And then even worse, I'm thinking "crap Phill was right, this is going to suck"

So the show starts. We sit on the blanket, I have Asher wrapped in my arms and legs tightly, and I snuggle in close to him. I watch as the colors in the sky play across his face and I wonder for maybe the millionth time how he sees what is in front of him, how his very special brain is taking it all in and experiencing it. And I also wonder, who is getting the short end of the stick...him? Or maybe it is the rest of us. Boom boom....and I whisper in his ear, "did you see the red one and the one that looked like a smiling face?" and he tightens his hand around mine twice to say "Yes" but no words. But he is entranced with the exploding energy in front of him, I could feel the energy in his body and wonder again what is it like to actually live in Asher's body. But still in all that, I see the wonder of childhood in his eyes, the happiness, the memories forming, hopefully happy memories of a time he came to the fireworks with his Mama. Hopefully he remembers me being loving and patient. Hopefully he remembers me smiling too.

In the past 4 weeks since then, summer has just sort of gone down hill. We decided to throw him a late birthday party since I was way too pregnant in April to even consider it. The party itself went well. He played with others and seemed to have fun. Except he decided he couldn't handle anyone singing Happy Birthday. And you know, at the time I didn't think much on it, but that was the start of his auditory tolerance breakdown. Since then, every time the baby cries, you see him crawling out of his skin. It is almost like her cry hits him somewhere in his central nervous system and slowly tortures him like the scream of a banshee or a slow dragging of nails across a chalk board. And to boot, Lola is teething, so she cries a lot. Sometimes he cries too because he just can't handle. But most often he screams "Stop Crying" or he'll try to make louder noises to drown it out. The hardest for me to watch, is when he rolls on the floor crying and covering his ears. It makes me sad.

And sleep? We thought it would be the baby that kept us up all night and tortured us with good old fashioned sleep deprivation. But no, she wakes every few hours to eat, but like a real easy baby, goes right back to sleep. Asher? He can no longer sleep for more than 2 hours at a time. And it is really draining me. Every night, he crawls into bed with us at least 10 times. Each time we walk him back to his bed and take turns snuggling him until we think he is asleep...only to find him in our bed again not long after. We used to give up and let him stay with us, but he isn't sleeping even in our bed anymore and he tosses and turns and kicks and flails. He is like a zombie child during the day, he even has dark shadows under his eyes.

So we've upped the melatonin and come to a dark enough place once or twice, where we've been tempted to give him Benedryl....but no we haven't gone there. We always promised we wouldn't drug him. I think about things like Trazadone all the time. I took it for insomnia as a child. I don't know. I hate these decisions. I want to make the right choice for him, not do what is easiest for us. But this slide down, it has been long and steep....I'm exhausted. And the kicker is, as much as I want out of the downward spiral, I know climbing that next ladder is going to be HELL. I'm tired. But we move on. Eventually someone wins this fucking game right? Historically speaking, it has never been me, but hey...stranger things have happened, so I'll just keep rolling the dice and see where it takes us. Hopefully the next roll brings on a great school year, progress with ABA, speech, OT...maybe some new friends, a breath long enough that allows me to enjoy my baby before she is no longer a baby. Even if the roll just brings us to an in between space, the consistency would be nice, I'm really starting to miss that in our lives.

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A quiet moment

I had to wait for some downtime to write this. It is silly really since we've already shouted to the world via FB that our little girl is finally here. Oh well. For some reason I only ever head over here to write something about Asher or Autism related. But this started as a family blog, so it only feels right to include Lola.

Lola Aisling Cole was born on May 15th at 10:21 in the morning via scheduled C-section. She was 7lbs 10oz and 20inches long. She came into the world making odd animalish sounding noises that were super adorable, with a head full of almost black hair, and looking just like her daddy.

When Asher was born and they handed him to me, I was in a fog. Of course I loved him immediately, but I wasn't in love with him. That feeling of just instant adoration and intense baby love didn't wash over me right away. I loved him, I was happy, but it wasn't what people told me it would be.

With Lola however things went a little differently. First off, I didn't get to hold her because...well...C-section. I had to watch Phill hold and snuggle her while I violently shook on the table. But what I could see of her was amazing adorable. And I was a little jealous.

In recovery when I got my first snuggle and real good look at her, I was immediately bonded to her. I was full of giddy baby love, didn't want to give her over for anyone to hold. My daughter, My Lola. It was surreal in a way because after we lost Elisabeth, had such a difficult time conceiving and delivering Asher, and multiple miscarriages afterward, well it felt like I'd never have a daughter. I had lost my daughter and now had a son. But she is here and she is gorgeous and she in mine.

Sometimes I look at her and listen to her baby sounds....which are definitely more feminine than Asher's were, and I wonder if this is how Elisabeth might have been if life had been different. Would Phill have held her the way he holds Lola? Which is different somehow than he held Asher. He is smitten.

And speaking of smitten? Asher Ben. He loves her. We were really worried that Asher would resent her. But instead all day long he tells us how much he loves her, how cute she is, and how sad it makes him when she cries. Having a sibling has already been good for him. When she cries he tries to comfort her, he pats her head, rubs her belly, and tries to give her pacifier back. Sometimes if she isn't in her swing or bouncer and one of us isn't holding her, he will frantically search the house for her. He comes back crying and saying "Lola is missing" Poor kid, she is just in her bed napping. And then he gets mad at me and tells me Lola needs to be where he can see her. Those moments are great for getting him to understand how scared we get when we can't see him or know where he is.

When Asher came into our lives, he came in with a loud crash. My whole life changed and it all revolved around this very sick and demanding baby. Asher was all consuming. Lola came in quietly. She has just sort of become a fixture in our home, almost like she was always here. Nothing much has drastically changed...well except my sleep pattern.

And here we are. Six weeks today. How did that happen? I mean wasn't she just born, but always here at the same time? Six weeks. I've already put away newborn clothes and sold off her newborn cloth diapers. It is way more bittersweet this time. Every time something ends I hear a soft whisper in the back of my mind and heart saying "Last baby" My last baby. God I'm desperate to enjoy every last second of her. This is the last time I'll get to have these "firsts" and if I blink or get preoccupied with life, I might miss something. And I don't want to miss any of it.

There really is so much more yet nothing really left to say. She is here. She is beautiful. And the Family Cole Slaw, is finally complete. When I look at my kids together it is so hard to remember back to the time when we thought we'd never have a baby of our own. And look at us now. Life is funny that way.

Everyone is a Critic

I've put off writing this entry for a while. Mostly I wanted to wait for a week where I wasn't judged by another parent, professional, or stranger. It was over two months ago that I made that decision. Two months. Sad right? It’s been over two months since I've had a judged free week.

One of the things you learn early in parenting, is that somehow just being pregnant makes you public property in some manner. People feel they have rights to opinions about you, be it your appearance, the decisions you are making for your baby, and what you should be doing if you're not already doing it...differently, more, not at all...you name it.

Everyone is a damn critic.

This doesn't go away when you have a special needs child. In fact it gets worse. The sad thing is that it isn't always meant with malic, I think in most cases people's intentions are good. I'm not sure what that says about our society, maybe a topic for another post down the line. People judge and they do it without knowing they are doing it. And TRUST. I know I am not immune to this. I am a flawed person, maybe more flawed than the next.

But being on the receiving end of it so consistently has given me some awesome fodder for reflection. So here are my thoughts

I split my life into my critics. There are several groups. Let us dissect them.

I have some wonderful friends. I split these friends further into my "IRL" in real life friends and my "e" friends, the wonderful people I've met in mommy forums, special needs support groups, and so on. I could further dissect these groups, but for conversation sake, let us just keep it simple.

IRL I have friends who look at Asher and say "I don't see it, I just don't. I believe that you think he is Autistic, but I don't see it" or "He isn't that bad, he looks like a regular 4 year old to me" or even better "Every kid has bad days" Except you just witnessed a good day for him. While these comments are meant to be supportive and kind, they aren't helpful at all. They just make me feel more defeated. I need my friends to understand how hard this life with this little boy can be sometimes, shoulders to lean on. I can't lean on them if they don't believe me, they won't support me if they think I'm exaggerating a very real and sad problem that takes over my whole life.

Sometimes I feel like I have nothing to talk about with these friends, when they used to know everything about me. Partially because I don't think they want to know this part of me and partially because while they don't know it, the look on their face when you talk about things like OT, Speech, and ABA is riddled with judgment. Like really "Why can't you just let him be a kid” Awesome.

I have a very small handful of e-friends that get it. These ladies know who they are. I love you guys, I do and I love our group. But the rest of my e-"friends" and I use that term loosely to describe a relationship with a group of women that have been together online since we were pregnant with our first borns, some of those friends have been downright hurtful with their judgments. At times it is hard to remember why belonging to this group ever seemed important. Oh because once upon a time we all just had kids who were the same age, they weren't differentiated by NT (Neuro Typical) and SN (Special Needs) I feel like most times I have nothing to share with these women either. While they debate things like Disney's new SN policies and see no harm in it, myself and the other "handful" of SN mamas are lurking in the back ground drowning in unfair judgment and choking on the opinions of others. And they don't get it. No one sees how these "little debates" can be so isolating and marginalizing.

Once way back in the dark days when I first got Asher's diagnosis, I had one of them call me out and say that they didn't believe Asher was autistic. Why the hell on God's green planet would anyone ever lie about something like that? You don't get cool kids points for having a disabled child. What a dark time for me. I was so upset by this women I would never meet and should have no care in the world toward her opinion, so upset that I actually scanned in my son's diagnostic medical documents and posted them online. So low of me. I don't know how or why I was in a place that someone's judgment could get me to such a place. It was almost pathetic.

But I have other critics and these critics have the ability to hurt me and my son a lot more. These are the critics that have too much pride to admit one of their own could be broken or imperfect in some manner. Yes family. I just want to say that I have some wonderful family members who are nothing but supportive. But there are others who look at us and say things like "there is nothing wrong with him, grow a back bone" "why does there have to be something wrong with him, why can't you just enjoy him" "why did you have children if you were going to let some quack place a label on him” or my very very favorite "I believe that you think he is Autistic” Sigh. Also not helpful. Not for Phill and I and certainly not for Asher. We have one person in particular who flops back and forth and by that I mean we are damned if we do damned if we don't. She will say things like "There is nothing wrong with him, you're just not parenting with a firm hand, he is a brat” and then ten minutes later when Asher is having a sensory meltdown and Phill is holding him in the other room to give him sensory feedback, will look at us and say "That is terrible, he is just a child” She who shall never be named is so lucky I hold my tongue more than I let it fly free.

So I spend half my time hearing about how people don't understand it or see it and then I spend the rest of my time being judged by the people who do. I'm either doing too much for my son or not enough. Let me explain.

So my friends think Asher is milder than he is, they don't see the things that worry us and think we are crazy for the amount of therapy we seek out for him. I'll include well intentioned family members in that group. Then there are the therapists. The people who do see it. But suddenly when talking to them 30 hours a week of OT, Speech, ABA, Hippotherapy, Social Group....it just isn't enough and why aren't we doing more?!? What do you mean you want some time for him to be a kid?!? OMG he has time to be a kid when he is out of this most important developmental stage. Have you considered medication for your child? NO? You're too biomedical? Have you considered fecal transplants? NO?!? You're not biomedical enough! You suck! You're choosing wrong!

I love even more sitting in school meetings where I try to explain what my son is actually capable of and I am told that he is so much more severe that I think he is. Wait a minute, back up....everyone in my life tells me I'm seeing things, he is fine, nothing wrong with him. And you, you sit here and tell me that my son is so severe he can never be in a regular classroom with normal kids, not just for his own sake, but for the sake of other children as well. He is so impaired he can't be taught to sit in a circle for morning meeting when a fucking dog can be trained to sit just because you tell it to? You're telling me that no matter how I try to advocate for my son, I'm wrong.

So many critics. As part of my non mommy self, I take on clients for advocacy. I actually sat in on a meeting where the school district in the span of five minutes told a mother that she should get her child involved in more activities and that she wasn't doing enough, but then just minutes later told the same mother regarding the same child "Shame on you for forcing her to do activities that cause her anxiety” For Suck Sake people. You'd think this mother was Hitler for signing her daughter up for dance lessons (Which said child loves btw) Why? Why would they do that? Because in once sentence in benefitted them to say mom wasn't doing enough and then in another it benefitted them to say she was doing too much.

So I say fuck it. Seriously. Fuck it. There are too many critics and everyone is on the extreme left or right. How about joining the real world here, that just happens to be somewhere in the middle? Is my son typical? No. I'm sorry friends I know you love me, but your denial hurts me. Is my son so disabled he can't be around normal kids? NO. I'm sorry well intentioned teachers who really do have Asher's best interest at heart, you wanting to protect him from the world and holding him to no standards, hurts him, it hurts me, and it hurts our family.

So I'm saying NO. You're all wrong. Society is wrong, the professionals are wrong, even those who love us are wrong. I'm so sick of listening to people talk about my son and seriously sitting there trying to figure out who the hell they are talking about. Surely not the skinny tall dirty blond four year old with huge blue, green, brown eyes that I tuck in every night. Not the same little boy that I put in time out forty times a day, redirect on the playground, snuggle and watch movies with, laugh with, cry with, be silly with, cry over when he is sleeping and can't see me. We're not talking about the same little boy, none of us. And we're not talking about the same me either. I'm not over exaggerating my son, I'm not under exaggerating him. I'm not putting him through too much therapy or not enough therapy. In truth our normal is just different than yours. You want a say in that? Too bad. I don't care for your say, unless it is 100% supportive and loving and transparent, unless it is absolutely free of your judgment. And it rarely is. Rarely.

Value

We are taught growing up that certain things hold value. I'm not talking about monetary value, although I'm sure that could apply, but milestones, achievements, goals, things that make up your value. I grew up differently than most people. I grew up away from my own family, but for the most part an outsider to the families that I did grow up with. Growing up in foster care is complicated. It may seem simple enough to the outsider, oh okay you didn't grow up with your family, but it isn't that simple. It means that forever your values, outlooks, spiritual beliefs, traditions you chose to pass along, those are hodge podged, things you've collected along the way, a little from this family and a little from that. People look at you and say, "oh you're Jewish, no wait, you're Christian" Myself I like to think I strive to be a good person and those titles don't matter. But they come up over and over again.

So value, I mean the value that floats between tangible and non tangible. For me this meant college. I didn't grow up in a family that said "You need to go to college" quite the opposite actually. I grew up amongst people that didn't hold those high expectations for me. I'm not pointing fingers, just the families I've lived with didn't even hold those expectations for themselves. But this attitude fostered in me a drive to find meaning in my education. It was very very important to me. During very difficult years that included 7 different high schools, I forced myself to pull it together and earn good grades. It wasn't easy. It wasn't at all. High school in many ways will always be my greatest achievement. And that is sad. Super sad. But college was the goal and I told myself that this was a very important part of myself. I went to college, I had a degree. And that degree lead to another degree. And I became the first person in any of my families to earn a Master's Degree. But it wasn't just any Master's Degree, it was a specialist's degree....and that held immeasurable value to me. I told myself, this is who you are and no one expected that of you, no one thought you could, not in a million years. And then at 26 I was accepted into a doctoral program, and that held an unreal amount of value to me.

Only life takes you on different turns. Instead of a Ph.d I chose to raise a teenager, something that held a different kind of value...in many ways a much more important value. After all, this child was so much like me, who I had been, and I thought that if I did everything right, gave her all the advantages I had, taught her how to use certain tools, well I could help her find the "value" I had discovered. I used to be so stupid. I was the smartest stupid person I'd ever met. So book smart, so street smart, but so interpersonally stupid. In trying to make better for this little girl, I was really trying to save the little girl I had been, which is also incredibly sad. And in the end, after all that effort, I'm not quite sure it helped either one of us.

But slowly my ideas on value began to change, I didn't dismiss my education, it was still an important part of who I was. I looked in the mirror and I saw a very intelligent woman, someone whose skill was extremely valuable in her field. I saw someone who could teach the unteachable to read, someone who had something to offer. It made me feel valuable. The sad part is that I never felt valuable just by virtue of being me. No one had ever told me that I was.

So life moves on and I look in the mirror and now I see myself as someone's wife, Phill's wife. I am a good educator, a loving wife, a great friend and sister, and now I'm an aunt. And that is who I am. And I feel good about that value. And then I am pregnant, I'm almost a mother, but not yet. But my identity is changing slowly. Still I held onto the importance of being Holly Cole, a reading specialist, a special educator, a damn smart person. After all, many are blessed with charmed childhood's, those gifts that I have never experienced. For all the bad I'd been given, I have never once taken for granted that I was given the gift of above average intelligence. It was so important to me. My brain was my value.

So Asher came along. I expected to look in the mirror and see my value grow. I would see Holly Cole, a loving mother, a wife, a great friend, the world's best auntie, a smart woman who indulged in brain research for fun, a prolific reader, and a progressive teacher. In reality I saw a struggling mother of an infant who was very ill. I was too tired to be a good wife, I became an unattentive friend, sister, aunt, I couldn't work, I was no longer an educator. And that brain research? No, it was replaced with immuno disorder research. And Asher became the only thing of real value in my life, and he was broken. I know people see me in a better light than this and I'm sorry to burst bubbles, but the truth is...I was incredibly depressed. I had no idea who I was anymore. And nothing was about me, I lost myself. I became the least important person in my life, the last person I considered, and everyone suffered for it. I lost my value.

Slowly life with Asher became easier. We learned how to manage PID, we learned how to cook for many many food allergies, we figured out the medical food game and there was more time to be a friend, mother, wife, aunt. I remember emerging from the fog and looking at my nephew and realizing, I didn't really know him that well, for all his six months on earth, I wasn't that close to him, not the way I wanted to be, not the way I was to his sister. I had been unavailable for too long. I went back to work, I felt good teaching kids to read, I started up my brain research again, I debated with coworkers the merits of research based phonics instruction over whole language methods. I felt smart again. And yippee...I brought money into my household...what a concept. I looked in the mirror and I saw these things. And I felt valuable again. It was nice....while it lasted.

Somewhere between 16-18 months for Asher, that picture started to become distorted again. Starting with the day I walked into a room and my son didn't look up. I kneeled behind him and screamed his name, he didn't startle, he didn't move. I banged pots and pans, nothing. Oh dear god everything went blurry...the picture started to acid peel away, it fizzled as it went, taking my sense of me with it. Then we dove into unknown territory. I looked in the mirror and all I saw was Holly Cole Autism Mama. Everything else that I had deemed so valuable and important was gone. I became again, the least important person in my life. My real value lying in what I could do for my son.

I couldn't work, which means we lost my income and suffered financially. Someday I'll write a blog about that, because it is unreal what having a child like Asher does to your financial security. I no longer had the means to pay on my student loans, loans that had paid for my precious education. I couldn't work, not if I wanted to get Asher the services he needs, keep him in the school program he needs, make the most of this most important developmental time period. And I'm not a martyr, I'm not an amazing mom, I don't have super strength, anyone one of you reading this would do the same thing. You'd do it. You just don't know it yet. I hope you never need to know.

And that is where we are. Only I look in the mirror now and I see Holly Cole, Asher's Mom, Autism Mom, Phill's wife, Lola's Mom. Now I think a lot more about my value, I'm reassessing. I can't stand before you and say that being a mom makes me super valuable, that is a smack in the face to every woman who longs to be a mother and can't. I can't say that an not take our sex back several generations. I won't stand before you and say my children are the best gift I can give to the world, little heroes just by existing, the bright lights that give my life any and all meaning it needs. Much like growing up in foster care, it isn't that simple. I love my son and I will love my daughter, I already do. But I love myself, I have to in order to be a good friend, a good wife, a good person, those things I also find quite valuable.

And I don't have answers. But I know that many of those who read my blog are special needs mamas and I know from conversations that we are all struggling with our value. It is a concept that is evolving slowly for all of us. And maybe my value on this Earth will never be tangible, maybe it doesn't need to be. And maybe my only real job is to not lose myself. I guess I just haven't figured out how to do that yet.

The Heart of the Matter

I remember sitting on a therapists couch several years ago and being told that when I speak I need to get to the main idea quicker. Too much of what I say has meaning, like every single word. Most people have a hard time processing that much information. My homework? Get to the heart of the matter. This is something I've been working on, but as you know...I'm wordy.

With Asher there has been so much information thrown at us, so much to update and tell. It has been hard getting down to the main idea. I'm not even sure what it would be. Describe Asher's issues in three sentences? That would take me longer to write than a paper. Seriously. I'm not sure which facts are more important than others, what is something to leave out, gloss over, not mention at all.

With our new baby, it has been more of the same. I haven't been sure what people would care to know, need to know, so I haven't really shared anything. But it might be time. And forgive me if I leave out information because I am going to try to keep to key facts.

So for the first time even, let me share that this pregnancy started out as a twin pregnancy. I'm sorry I know I haven't really shared that. Early on one of the babies stopped developing and instead of vanishing or being reabsorbed, the "debris" hung around and became almost like tumors hanging around in the viable baby's sac. Pregnancies like this one have less than a 50% chance of making it passed the first trimester. But we did. The "debris" is slowly being reabsorbed over time, but there is a chance that when baby girl is born, she may have some extra baggage. Nothing that we can see so far on ultrasound though.

We shared when we found out the gender that we are having a little girl! What we didn't share is that we had to go back three times for our anatomy scan. At first we were told that they just couldn't see her face, that she was being stubborn and we couldn't get her in the correct position. The next week we were told that they saw something. Key fact: Our baby has a heart defect.

There are a lot more details and things that feel so important, but I'll leave it at that. We've had worry of course, but we've learned with Asher to remain calm and balanced and roll with things. After all there isn't much we can do. We've got this no matter what. We'll do what we have to.

Yesterday I met with specialists, had a follow up ultrasound and fetal echocardiogram. And while the news isn't perfect, it is still good. They can still see the heart defect, but somehow in the three weeks since they last looked....50% improvement! Not perfect, because perfect would mean no heart surgery ever, but still good news. Baby girl will not need surgery the day she is born, like we'd been told might happen. She may even be able to avoid it in the first year. And that would be even better news.

So why share now since things are good? I didn't want to share our doom and gloom...we don't want to be that family. Of course people will want to know after the baby is born why she is fragile, prone to illness, why we say "Please use some of our hand sanitizer if you want to hold the baby" lol. I don't want to explain myself later. But mostly I wanted to tell everyone that I finally figured out the heart of the matter, I had some help while hashing it out and getting feedback, but the heart of all of our matters, every trial and tribulation, every problem that we choose not to get us and meet head on, the heart of all those matters is that our life while not perfect, is still pretty good. Just like Lola's heart.

Oh and baby girl has a name: Lola Aisling. That is your reward for reading a non sappy, to the point, nothing too interesting post.

Breaking News

First things first, are you pregnant? Do you plan to become pregnant? Wait! Stop! Don't breathe! This just in, breathing during pregnancy causes Autism. This is based on zero fact and completely meant to instill fear and perpetuate ignorance and misinformation. You're welcome. Remember folks you heard it from me first.

Okay seriously, I'm sick and tired. I'm tired of hearing that x,y,z causes autism and new "evidence" shows a link to x,y,z....based on zero actual fact. So here is the translation: You did something to cause your child's autism and if you're pregnant and eat at all, don't live in a bubble, well then your kid is going to get the autism too and it will be all your friggan fault....take the mommy shame with a side of guilt and future remorse. Bam.

Today I was in my OB's office and I happened to have Asher with me (Fuck you professional development day right after a holiday) His behavior was....special. You know aside from the fact that he is autistic, he is also three and a half and waiting is not his forte. Anyway, a very pregnant young woman next to me decided that my hands weren't full enough and that what I needed was for her to chat my ears away while my OB ran 45 minutes behind.

I learned that this woman is expecting her first baby, she is not getting the flu shot or doing the glucose screening, because you know...she doesn't want to increase her chances of having a baby with autism, she even refused all ultrasounds... too risky. But I'm not judging, because well to each their own. I mean I inwardly laughed at the sugar glucola drink to screen for diabetes because well lol..but whatever.

But halfway through her non stop chatter she stops and says "You have your hands full there" Yeah what gave that away? The fact that you're practically talking to yourself while I chase my son and wrestle him before he runs out of the room? Or maybe she breathed long enough to realize that my child is screaming "stop talkin at me!" In any event, she surveyed the scene in front of her and said "I'm not an expert but he is acting a little autistic if you ask me"

Okay to stay with me. Because you guys know me. I just looked at her, purposefully made her feel uncomfortable while maintaining silent eye contact and slowly said "Well that is because he IS Autistic and you're bothering him" I give her credit. She looked a little put off, but then she almost whispered "So you're having another one? I think I read somewhere that your next baby will definately be autistic too"

Don't judge me too harshly here. But I leaned in and said "speaking of risk factors based on zero study and fact, I think your child is bound to be rude....you know like mother like child" I was going to scoop up Asher and move away, but she beat me to it.

Anyway, I'm a pretty regular poster on a mommy message board. It is a general board, so the only real thing we all have in common is being pregnant at the same time. But honestly, it seems like everyday I am typing "FOR FUCK SAKE PEOPLE" because I'm constantly reading crap like "OMG did you guys know pitocin causes autism?" "I'm not getting the flu shot because I don't want a child with Autism" "Did you guys know we should be avoiding red and blue dyes"

Really everyone, just shut the fuck up. I honestly believe that anyone, anyone out there who is spurting crap about autism and does not have a child with autism...well they just need to shut up. Stop spreading fear, stop spreading misinformation, stop fucking blaming people for what is essentially a genetic toss of the neurological dice. Lucky for me, I'm a smart girl and a bit of a bitch, so I'm resilient. I'm not about to let a single person tell me that I did this to my son. But there are women with children like Asher or more severe who read this stuff and think "OMG I let them induce me, I let my son down, I should have just waited until I was 48 weeks pregnant and then he'd be fine" For me it would be more like "Fuck dude, I ate way too many chocolate donuts when I was pregnant with Asher...oooops, who knew chocolate causes autism?" For Fuck sake.

The fact is, Asher is my son, but he is also Phill's son. Our genes combined in a way that made Asher, everything that he is. The awesome, the good, the normal, the eh, and the ugly. And it is just who he is. This little boy would not have been born to anyone else exactly the way he is, regardless of the similarities in pregnancies, how many donuts were eaten, if the flu shot was had, or if mom opted for a natural delivery vs and induction. This child is my child, he is Asher, and he is special in many many ways.

Sometimes I read this crap and while I silently laugh at the stupidity of it all, another part of me panics "What will I do if my little girl is like this too? Can I handle two of them? Would I be a good mother to two high needs kids?" All mothers to be worry, but special needs mamas worry at a different level. The what ifs are bigger and the whys may never be answered. The only thing that would really help, would be people just shutting up every once and a while, thinking about what they are saying, the message they are sending, the judgements they are throwing out.

Wait wait.....don't blink, don't eat x,y,z, next thing you know you'll be telling me those things cause heart defects...oh wait we were talking about something else.

30 Days of Thankfulness Day 26 : Setbacks

Sometimes it is really hard and a little sad to look back at where we started. But I've been doing it a lot lately. Of course we started like everyone else. I delivered a little boy, a lifelong dream and thought "finally this is happiness" Asher our cute little baby, he has medical issues, but he was happy and meeting all his developmental markers. Like most new moms, I annoyingly posted about all his milestones to anyone who would listen. "Omg he is talking in 2 word sentences at 12 months!" So advanced. Sigh. He walked at 8 months, he talked early, it seems he never wanted to be a baby, always striving towards being a big kid.

He had a lovely personality, he flirted with cute waitresses and little old ladies. People stopped us in the mall to tell us how gorgeous our baby was. People wanted to hold him. Medical complications aside, we felt so...blessed. And then one day it crashed down. I remember very clearly the time frame because it started the week before my Aunt Cathy passed away. Asher and Ethan both were so sick, for a week straight they had super high fevers above 104. Antibiotics, breathing treatments...long sleepless nights and at least a handful of visits to the pedi and one or two to the ER. Naturally he was quieter, he was sick. Sometime after my aunt's funeral, I noticed he wasn't himself anymore. He had gotten better but was still quiet. Eerily quiet. And then it hit me, he was too quiet.

I remember sneaking up behind him and screaming his name as loud as I could. The panic when he didn't startle, didn't look up, didn't even notice me. I thought, we thought, everyone though that he had lost his hearing, that somehow in the illness Asher had gone deaf. And I remember being like "okay I can do this, I can understand this" and going ahead with the appts. I was worried but not panicked. I could sign, I could teach him, we could do this. But then brain stem stimulation showed that his hearing was perfect. This event started the year of our journey toward his autism diagnosis. Set back one, loss of communication. Set back two, loss of a happy baby. Set back three, loss of all social communication.

That was the beginning. In those early lost days I would leave playdates with out children and ugly cry the whole way home. It was hard to see a light at the end of our dark lonely tunnel. It was so hard not to despair. What had happened to my happy, social, noisy little guy? How does that happen over night, like a snap of the fingers? Switch of a light? Poof!

He has come so far since then. It is so hard to read his testing from last spring and even reconcile that he is the same little boy. It has been forever since I left a playdate without a smile on my face, left feeling despair. It has been so long. There have been little set backs, but we've handled them in stride. You learn to do that as an autism Mama. But we have been getting used to the upswing, because it feels so good to be on the end of things.

But then a couple things have happened. I got pregnant and life has been a struggle. I've been sick and not able to pick him up, play the way I used to, spend long periods of time reinforcing therapies. His classroom teacher left for a new position, we had to change his speech therapist because we could no longer make the hour plus drive. A couple beloved friends moved onto kindergarten. And because I'm not super mobile he hasn't see some of his important people as often as he used to. We saw the behaviors, but we understood them and told ourselves "Don't worry kids regress, kids like Asher regress"

But then it happened. We went on a nightmare playdate and I didn't cry on the way home, but almost. He was yelled at in public by a crazy dad who called him an "f'n brat, a little nightmare". Once again people started to give us that look like "Why do you bring him in public?" I've dealt with it all, I haven't cried. I even laughed at the crazy dad.

But then we went to a birthday party comprised of kids from two different special ed classrooms. Bar one or two, all the children there were special in some manner. Many of them carried the same DX as Asher. Yet my kid was the one who stuck out, the different one, the worst one there. We ended up leaving the party before a lot of the kids, he was over stimulated, friend, burnt out. And for the first time in a very long time I cried leaving a party or playdate. I cried the whole way home.

So today I prepped myself for Asher's parent teacher conference. I had been told ahead of time that it would just be the teacher and I, informal to discuss progress. My heart sank when I walked into the room and saw the whole team, including the autism specialist. Well crap. Really just "fuck" Sorry but sometimes there aren't better words. "fuck"

This summer I was so excited because the school had this awesome plan to ease Asher out of his sub sep room, move him into a typical classroom, with typical peers. We had this awesome goal for him and no one said he couldn't do it. The light in the tunnel was so bright. And I really wanted it for him. I really really did. When I went to bed last night, I thought "well they may say he has had setbacks" But I didn't expect them to change the plan.

It is funny, even though I sat there and I listened to all the reasons why the plan is no longer right, all the things that still needed to be worked on, everything that normally would have killed me to hear, I could still see the light at the end of the tunnel. It may be flickering and a little bit dimmer, but I think maybe I've allowed myself to grow and no longer to set backs as set backs and maybe just paths to a different turn in the road.

So I guess, even though it is hard to feel thrilled and happy, I am thankful that even in dissapointment, set backs, and deviations from a very much wanted goal, we can still see Asher's light burning brightly. We still see him moving forward. And that is something to be grateful for. It wasn't too long ago really that we sat staring at a baby that was completely silent and later a toddler who was so clearly different than what he should be. And even through set backs, we aren't there. He is himself, just Asher, and we'll take the set backs with the gains. We'll roll with it. And be grateful that we can still see the end goal. It is still there.

30 Days of Thankfulness Day One: Patience

When I was little I was “A lot of work”, a “Very needy little girl”, just “too full of energy, a child who “Asked too many questions”, a little girl that got told “Patience is a virtue” a thousand times a day. I was that child. Sounds exhausting.
I have vivid memories of my childhood. I remember whole conversations, experiences, situations, all in great detail. I am a sentimental person and I’ve held onto my memories, unwilling to let them go.


I have good memories, lots of bad ones, some just “ugh being a child sucks”, but overall I remember people never listening long enough, never stopping long enough, and getting left behind with something important to say, needing to be heard, needing someone, anyone to just hang in there and wait for the end, for the message, someone to say “Wow, hanging in there was difficult, but I’m glad I did” Incidentally, this happened to me a handful of times before I was 20. Once in sixth grade, because I had an awesome sixth grade teacher who went out of his way to make every single student feel valuable, important, and special. And then once in college when my favorite professor told me. “Holly when I finished that very first lecture I had with you, all I could think was this is my know it all student, blah blah. But shame on me, because I hung in there and I’ve listened. And what I’ve come to realize is that everything you have to say is important and useful. You’ve taught me to slow down and listen” The other handful of times were by a woman who took care of me and loved me, even though she didn’t have to. I have called this woman many things, my foster mother, my friend, almost like a sister, but now we know her as Asher’s Mimi.


It has never been a great mystery as to why I became a teacher and who inspired me to do so. And never a real mystery why I wanted to be a good mother more than anything else in life. But aside from these two teachers and a foster mother who really understood kids, no adult in my life was able to show me any sort of great patience. So I grew up with none. I can’t stand waiting in lines, time tables really bog me down, things like “Give me give five minutes” really drive me batty. I need fast paced conversation. Keep up people. Disney Land? Forget the kid not being able to wait in lines….damn. It’s one of the reasons I always answer “Epcot” when people ask me what I love most about Disney. I like walking around and getting instant gratification. Even things like starting a family, getting married, going to graduate school, the perfect job…..I was impatient. I couldn’t wait.


Sometimes God slowed me down. Haha Holly, you have to wait for your children because you have infertility. Married? No instead you’re going to adopt a teenager. The perfect job? Nope you’re going to need to muddle through a few until you find where you belong. Awesome creative conversations with my adorable toddler…no, SLOW DOWN, you have a special child. And all these things have been good for me and have required great patience. They have lead me to my life now. I am happy for the most part. I have a specific set of skills that make me valuable in my profession. I am a good friend, mother, sister, and I strive to be a good wife. It has been trying, but in these times I have been grateful for every single experience I’ve had with people who did not show me patience. They were examples of what I didn’t want to be and how to strive to become a more balanced person, one who can wait until things are supposed to happen, instead of trying to force them.


But Grateful for those experiences? Yes. I’ll explain why. Being a mother requires a great deal of patience, we all know that. Even the best mothers crack and lose it from time to time. But good mothers also need compassion and empathy. I feel like a lot of us in our rush to grow up, let go of our childhoods. We shouldn’t do that. We have to remember being a child, when little things felt HUGE and overwhelming. When things that seem so unimportant to adults, just take over little worlds. When an important point is muddled up in a long boring story that is spouted off in an unorganized, long manner….when you just need to hold on until the end to hear that important “little” thing….even if it means not answering the phone, putting down the laptop, losing a little bit of “me time” or setting dinner back 10 minutes. Good mothers need that.


And I need that more than I ever thought I would. I need the memories of what it felt like to be that little girl, who never felt heard, who never felt important, who wished everyday people had more patience. And I’m grateful for it. I am grateful for every single time an adult laughed me off, told me to wait and never came back to the conversation, every time someone did not hear me. I am just as grateful for that as I am for the handful of times I was heard.


I’m grateful because I have Asher. And Asher is a child that requires an incredible amount of patience. You really have to hang in there to hear him. Sometimes it means waiting until the end of a 20 minute dialogue from Lilo and Stitch to realize it was the only way he knew how to tell me that he loves his family. Because, “O Hana means family and family means no one gets left behind”. It means taking 50 deep breaths during a tantrum and sticking it out instead of walking away or getting upset, because usually it means that something is going wrong in a sensory manner, that he needs my help. It means listening to jargoning, patiently waiting for a message in language that is echolalic. Not losing it at the play space when I have to guide Asher through the signing and repeating of “I’m sorry friend” for the 80th time.


Patience. And I am not naturally a patient person, it was never really modeled for me. I never learned how to be. And to be honest, we just don’t live in a patient world. But when I want to snap, tune out, walk away, dismiss, I remember being that little girl and how big the little things felt and how it felt not to be listened to, to always be on punishment because it was easier to punish me than listen, to be misunderstood, and brushed aside as “very needy” And I know I will stick it out and I will hang in there for my son.


So I am grateful for the lessons I have been given in patience and how important it can be. Grateful for every single experience that has taught me that. How powerful and life shaping it can be when it is received, how it can change a kid’s world. So I will take the lessons I’ve learned and be patient with my son, always, because I love him and I believe that what he says should be heard, even if I have to pry it out of him, even if he tells me through tantrums and bad behavior or if he tells me through an ecrutiatingly long reenacted scene from Veggie Tales. He is valuable and he will grow up knowing that I know he is important. And maybe if I model it for him and show him what patience really is, instead of just telling him that patience is a virtue, maybe someday he’ll grow up and be an awesome dad, or friend. Maybe he’ll work with kids like himself or be an awesome sixth grade teacher, maybe he will be an example to all what this virtue of patience really looks like….who knows? But today I am grateful for patience and the strength to hold onto it and use it to be a better person.


I also want to say thank you to the few adults in my life that knew this and strove to be a model of this virtue even when I am sure it was difficult to do so. So thank you Peter Anti. Thank you Dr. Corinne Merritt. And thank you most of all Donna Webber. Thank you from the little girl I used to be and thank you from the woman that I have become.

Fireworks

Someone sent me a link to a Katy Perry video not too long ago, I ignored it, because seriously, I don't like Katy Perry. It was someone who knew me well and I couldn't help thinking "really? I thought you knew me!" Turns out that person knows me so well, they know when I can get past myself and enjoy something on a different level. So a week goes by and I get a FB message "Have you listened to the video yet?" Only I haven't and I can no longer find the link. So this friend directs me to another friend's page and for the first time I see the title "Katy Perry sings Firework with Autistic girl" So now I have to watch even though I've never liked Katy Perry. Wow. I'd never really listened to the words before, it was just a poppy song that I would sometimes listen to on the radio if no other station had something better, but most times I switched it off.

But the words of this song, fit Autism so well. I'll share them here in case you've never really listed. I cut out most of the repeat chorus.

"Firework"


Do you ever feel like a plastic bag
Drifting through the wind, wanting to start again?
Do you ever feel, feel so paper thin
Like a house of cards, one blow from caving in?

Do you ever feel already buried deep six feet under?
Scream but no one seems to hear a thing
Do you know that there's still a chance for you
'Cause there's a spark in you?

You just gotta ignite the light and let it shine
Just own the night like the 4th of July

'Cause, baby, you're a firework
Come on, show 'em what you're worth
Make 'em go "Oh, oh, oh"
As you shoot across the sky-y-y

Baby, you're a firework
Come on, let your colours burst
Make 'em go "Oh, oh, oh"
You're gonna leave 'em all in awe, awe, awe

You don't have to feel like a wasted space
You're original, cannot be replaced
If you only knew what the future holds
After a hurricane comes a rainbow

Maybe the reason why all the doors are closed
So you could open one that leads you to the perfect road
Like a lightning bolt, your heart will glow
And when it's time you'll know

You just gotta ignite the light and let it shine
Just own the night like the 4th of July

Boom, boom, boom
Even brighter than the moon, moon, moon
It's always been inside of you, you, you
And now it's time to let it through-ough-ough



So there is a lot in there that a parent of an autistic child can identify with, especially the first lines. But feeling trapped inside and screaming when no one can hear you, I often wonder if that is how Asher feels and what is must feel like for him. It is something I always worry about. To listen to these words and listen to an Autistic child sing them, broke my heart.

But more than that, likening Asher to a firework shooting across the sky, well that makes sense. Sometimes lights come on in his eyes and you can see the fireworks in his head lighting up. On these days we tell him "Wow you're on fire" Because sometimes he is so on it and so with it and so connected to us, himself, his thoughts, and able to communicate what is going on in his brilliant little mind. I really live for these days with him. On these days, it is almost impossible to see the things that make him so different from other children. I can see the fireworks, the little ball of energy shooting around my house, explosion of colorful ideas, make believe, intensity that would have been hard to imagine the day before. He is a firework. It is a perfect description.

So I think of him that way sometimes, a little closed up boy walking around with so much to share and sometimes I wonder what the future will hold for him. It is dangerous to think that way, I've blogged about it in the past, but with a child like Asher you have to live in the day and in the moment and appreciate the small bursts of shinning color when they come.

Lately Asher has really been into "Planes" so despite the fact that it got terrible reviews and he was terrible the last time we took him to the movies, we loaded him up and took him to see it. There were very few people in the theater, and at the table right next to ours, was a three year old little girl. She had adorable red hair and was sitting there so calmly and well behaved. Asher was excited to see the movie and I could see the wheels turning in his head, "Oh no! He is going to get overstimulated!" And I see him struggling, he is bopping back and forth between our chairs, running around the table, asking to be squeezed. And I panic for a moment thinking "Where going to have to leave and he is going to be so disappointed" Ugh. But this little girl came up to him and said:

"I'm Gabriella, wanna sit with me?"
"Yeah, I Asher, let's sit"

And so the two of them move their chairs so they are right next to each other. I glance nervously out of the corner of my eye at the other mom. But she seems fine with this turn of events "Phew!" So I sat back and watched, I listened, I was worried that like most kids, she would get frustrated eventually and he would be left sitting alone. But really as it happened that day, he was on fire. A little firework that charted excitedly to his new friend about the movie, kept her engaged in the conversation. You could see the fireworks going off in his head. It was adorable and what I would expect to see if typical kids seeing a movie together. They cheered when they plane was saved from the Ocean, they cheered when he won the race, they clapped at the end of the movie and I may have even seen them holding hands for the briefest of times.

It was one of those perfect typical days that Autism parents rarely get. And when they do, it is like a gift. I will never see fireworks for the rest of my life and not think of Asher. Hopefully, I won't have to think of Katy Perry every time, but even so, if I do, I just want to say thank you to her, that she is the type of person who would do something like this:



http://www.youtube.com/watch?v=QX-xToQI34I