To Be Human

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We all need a healthy balance of time to ourselves plus time with others. However, those of us on the Autism Spectrum may have intense special interests and social awkwardness. To other people, this can make it look like we are content to stay in our own little worlds.

But what some people don’t see is that there is this unfortunate paradox for us on the ASD Spectrum. We can to tend be unintentionally socially inappropriate, which drives people away, yet there are those of us thirsty for companionship, because hey…we’re human beings.

As a mom on the Spectrum, I’ve realized I’m not an island. I’m a peninsula–stubbornly jutting out from the mainland, but still forever a part of it.
I rely on the connection to that big, varied continent of Everybody, to keep me from being stuck in my head in an unhealthy way. To relieve some of the intensity that gathers when I’m by myself too long. And when you’re a mama, there’s really no such thing as “by yourself”, but stay-at-home moms, you know what I mean–going through days mostly void of adult conversation or any communication more meaningful than whining and sudden tantrums (mine, that is…just kidding).

Yes, I would love to dive under a pile of covers, curl up into a tight little ball like a dead bug and sleep for several millennia. I want to create art and listen to music and read, or heck, just poop, with absolutely no interruptions. Not from my child, my husband, Facebook, or whoever randomly calls me.

But I also really want connections with friends and family and other moms. And to meet up over coffee/wine/whatever beverage suits the hour, discussing late nights and is your kid walking yet because mine isn’t and things like that.

I just want others to know that even though we may not look like it, sometimes we get lonely here in our own little worlds. And we may not all know how to come out and say “hi”. Though some of our behaviors may be different from the general population, we are unique, fascinating people to know. So, say “hello” to an Aspie today. Ask them what they find interesting (I guarantee you’ll get an answer!). Because everyone needs a little companionship…and that’s how it is to be human.


Image by greyerbaby on Morguefile.com

From Their Perspective

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You know something? Parenting is hard. The sleepless nights, the worry, the noise and tantrums, the flu bugs, the tough decisions…it’s enough to crumple a tough person into a stressed-out little ball sometimes. So what could be more trying than this very important job we have as moms and dads?

How about being a child? Likely none of us remember much from before age two or three. What was it like to be an infant? They have likes and dislikes and fears they can’t communicate–and they experiencing the same emotions as we do, but with an underdeveloped ability to cope with them. And sometimes when they lose their patience, we lose ours. Lately my kiddo is learning to assert herself, and I find myself losing patience more often than I should. To better handle when wee one is being unreasonable (i.e., tantrumming over something tiny), I need to try to see things from her point of view. What may be silly and small to me, is probably momentarily devastating to her, because she doesn’t know how to handle it.

In this vein, I just ran across a short insightful blog post on life from a tot’s perspective: as a challenging, frustrating and exhilarating experience. Read here: It’s Hard For Them Too

What’s the “silliest” thing your kiddo has thrown a tantrum over? Got any tips you use to help them (and you) calm down? Feel free to comment below!


Image by Jentsoi at Morguefile.com

 

The Paranoia of 2 A.M.

Something from awhile back… (what is it about 2AM?! I’m noticing a theme here!)

It’s 2:00 A.M. It’s dead quiet.

My husband agreed to be the first one up tonight, and I thought that meant rest for me. But here I am, unable to resist the urge to check on what is obviously a peacefully sleeping baby. I roll out from under my cozy covers, and make the familiar short trek over to the nursery just a few feet away. I tiptoe on sugar glass into my daughter’s room, the door barely making a whisper against the carpet. Groping around blindly, I flick the dim closet light on.

Good, that didn’t wake her. I peek into the crib, watching with eagle eyes for my daughter’s little lungs filling, a quiet hush of breaths coming in and out.

Shit.

She’s face-down on her stomach, an arm lodged between the crib rails. She’s obviously breathing fine and somehow contentedly fast asleep in that awkward position. An inner battle begins. Should I flip her over, which will most likely wake her and my husband from their peaceful slumber? Or do I leave her be, since she’s obviously fine? She’s got amazing head control at 4.5 months old, I’ve seen her turn from uncomfortable positions numerous times. She coughs and turns her head. SHIT. Now she’s facing away from the fan, which we left on for air circulation.

I stand there, frozen. She is fine. And asleep. I wish I could just teleport her away from the crib rails three inches. I grit my teeth and reach in, knowing if there were even the faintest possibility of her being unable to move her head while we’re asleep, it could have unthinkable consequences. I scoot her back into a safer position. She barely stirs, thank heaven.

Flick. Off with the closet light. Then I hover over her for what seems like an eternity. Flick. The light’s back on and I’m watching her tiny chest rise and fall. No, she’s still too close to the crib rails. I reach in again, moving her tiny arm further from the gap in the rails. She sighs, still sleeping, but barely. When I finally realize my back hurts and she’s not going anywhere, I slowly make my way back out of the nursery.

I climb back into bed, my mind racing. What if she moves again while I’m asleep? My back screams at me for lurching over the crib for so long. But it doesn’t matter because my daughter is safe, and my job is to make sure of that.
The funny thing is, as parents we lose sleep when our kids are awake at night, but they’ll never know how often we’ve been awake when they’re asleep–just to make sure they’re okay, even when we know they are. Am I paranoid? Probably. But the line between careful parenting and plain paranoia is just so damn thin.

I lay there with one ear and one eye permanently open, the nursery in direct earshot, just waiting for when I’m needed. Rest won’t come easy.
I get back up…and check on her again.


 

Face the Strange Changes

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Have you ever heard the David Bowie song “Changes”? Despite the fact it was probably never intended as a self-help anthem, I love the chorus : “Turn and face the strange changes”. It’s like a challenge for me to stand up and take on something that sometimes scares me–new situations.

Nothing in my life has caused more rapid, jarring changes than becoming a parent. Rather than a gentle learning slope where I pick up realizations as I glide down it, it’s a seat-belt-free crash course where I’m hurtling toward the unknown while my butt catches fire.
This is a challenge because a large part of me finds comfort in routine, its predictability and sameness feel safe to me. I never get “shaken up” and I don’t have to face situations I don’t know how to react to. Children thrive in a routine, as it’s suggested by numerous experts. But as we all know, children also have a curious way of shaking things up for themselves and everything around them. What worked today may suddenly not be an option tomorrow, and there’s not going to be a heads-up first…for us OR them.

An example:
When my baby learned to flip onto her stomach, her once long, mostly quiet stretches of night-time sleep were suddenly punctuated with frustrated shrieks. She knew how to flip over…but not how to flip back! Her new skills were so exciting to her, her (and OUR) sleep was suffering while she practiced them at unholy hours of the night. The disruptions made all of us pretty cranky but more importantly, it was an obvious sign that she was changing–again–and we would need to change WITH her.

We would need to give her more daytime play on her stomach, get used to a lot of interrupted sleep for awhile, and guide her while she perfected her ability. Once she did, there would be no time to catch our breath, as more new developments lay ahead.

This is a wonderful thing–because obviously without change, she wouldn’t be growing and learning. While my Aspie nature fights tooth-and-nail against yet another routine upset, it’s also amazing to see my daughter suddenly jump ahead in her development. She’s delighted to grow up, and I’m delighted to watch her.

The bottom line is, kids keep us on our toes, and we NEED to be on our toes. Otherwise, we stop growing and improving as human beings, and our parenting suffers. Ultimately, some of the most amazing things in life happen only when something drastic occurs. Things like marriage, moving, getting a new job–these are all things that make us completely uncomfortable, yet yield such fulfilling results that we would never have experienced without willingness to adapt. And that flexibility is a great example to set for a child growing up in a constantly shifting world. Considering how often children change and grow, we don’t want to teach them that the new and unexpected is always dangerous and scary! As my kiddo grows, she’s continually nudging me to “go with the flow” more, and those lyrics, “turn and face the strange changes”, always come to mind. It’s good advice.

And if I need something predictable to rely on, it’s this: Always expect the unexpected. Changes will come, and you can rely on that.


Image © veranuem

 

What It’s Like To Be A New Mom…With Asperger’s

 

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My daughter has just been born. I am a mother.

This hasn’t quite sunk in yet, but I do what I’ve read I’m supposed to do, and put her tiny, wriggly little body on my chest while she searches for my breast. I’m still in shock from the unbearable pain of delivery. I breathe a sigh of relief when she latches onto me for a few minutes.
Visitors come by and I’m not really ready for them but I likely never will be. I’m still thrilled to introduce them to the new baby.
I stare in awe at my little girl. Did I grow that? I can’t believe it. I thought I was supposed to feel some indescribable motherly bond, but I’m really just exhausted. I ask the nurses how to dim the lights–they are so bright.

My husband and I smile at each other. Our 2-week old little girl is quiet, alert and lovely. I somehow don’t feel like she is mine but I feel fiercely protective of her anyway. I am so paranoid about the rattly, asthmatic sound of her “flappy airway” that it takes two pediatricians and two doctors at a 3 AM E.R. visit to convince me that there indeed really is nothing wrong with her.
I run through the constant cycle of diaper change, feed, burp, sleep and I wait to feel that “bond”. Weeks pass and it never comes. I am in a constant state of pain and exhaustion, and I try not to let it distract me but it does. Breastfeeding is a terrible, painful struggle for us both and my daughter never latches properly, despite numerous experts’ help.

I am defective, I decide. I should never have become a mother because I am not feeling what I should feel for my beautiful daughter. Surely she deserves better than me. I am angry a lot and numb the rest of the time. And I am afraid. Afraid of how I feel when I’m stressed, afraid of her and her piercing cry. I don’t want to soothe her when she is screaming in the nursery because it causes me such intense anxiety that I want to run far, far away while my heart pounds in my ears. I grit my teeth, and I go in. I try to cradle her tense little body, but rocking her doesn’t help, she keeps screaming. I put her back down in her rocking swing. She eventually stops. I feel like I couldn’t calm her because I couldn’t remain calm.

I can’t handle the intensity of my emotions, which run to extremes multiple times a day. I lie awake one day daydreaming about sitting in my running car with the tailpipe blocked–and then I know this is something more than the “baby blues”. I’m eventually prescribed an antidepressant for post-partum depression. I was already naturally prone to depression, as well as anxiety, which I was treating before I was even pregnant.

Just days later, I start to feel a difference. Then for the first time, I feel like a mother. My wee one looks at me and smiles and I catch my breath and my eyes tear up with joy. I didn’t know I could feel this way. She is mine.
It’s been assumed that Aspies don’t feel properly for others. I know they’re wrong because I feel so much for her–too much, on top of my own emotions I feel hers too. I feel her anger when she doesn’t get what she wants right away, her anticipation when she’s getting ready to eat, her happiness when she giggles. I am constantly looking for ways to get her to smile and laugh.

It’s easy to find moms with children on the spectrum, but oddly difficult to find any parents with Asperger’s. I want to reach out and connect with other mothers, and I also want to hide and protect myself. I’m so awkward–I laugh too loud, I interrupt, I get so  nervous. I make tentative friends whom never contact me and I never contact.
I want my daughter to have friends someday, more than I ever had. How can I help her do that, and teach her the “right” way to socialize?

So many thoughts run through my head. What if my baby turns out like me? How do I teach her the skills that I still struggle with?
What is the best way to provide her with the breastfeeding and skin-to-skin contact that will help her thrive, when it can be so painful for me? Am I providing her with everything she needs to be happy?
I see my daughter growing every day and I know she will someday soar past where I am able to fly, learn things I was never able to master, learn from me and then teach me.

One day someone asks me how I am enjoying motherhood. I know what they want to hear–a glowing declaration of “It’s the most beautiful thing I’ve ever experienced”. Instead, I shrug my shoulders, make a dorky face and answer, “It depends on the day. And the time of day”. Because I’m nothing if not bluntly honest. Sometimes it IS beautiful and my heart feels like it will burst with pure love for my daughter, and I don’t even know how to contain it. Sometimes it’s the most terrifying experience ever. Sometimes it’s just “blah” and I’m nearly nauseous from the smell of dirty diapers and I’m waiting for bedtime.

But I always love her. It’s like that for moms–Asperger’s or not.


Image © veranuem / The Puzzled Mom

If She Is Like Me

I was thrilled to discover I was pregnant and excited to feel my daughter growing day by day. But in the background, behind the anticipation of meeting her, lurked an uncertainty that some parents may recognize:
What if my daughter has Autism Spectrum Disorder?
What if she ends up like me? What if she is painfully awkward around others? What if she chews on her lips like I do? What if she is overwhelmed by everyday noises or upset by insignificant routine changes?
Then I thought…what if she enjoys creating something out of any material? Moved to tears by a beautiful song or captivated by a raindrop? Has the capacity to feel fierce loyalty for her loved ones? What if she ends up like me?

Even if I was not Aspie, there is still a chance that my children could be. There is no single genetic factor causing all Autism and according to studies, it can manifest spontaneously.To worry that my daughter would be horribly affected just by being my child, is a form of self-loathing that I DON’T want to pass down to her. I don’t know who she will be, but I do know that I want her to be confident in herself, whoever that is. And that starts by example. There are many parts of myself I don’t like and many things I can’t do, but I am no less than anyone else, and neither is anyone who reads this. We are all human, imperfect in our own unique ways.

I believe some of a child’s problems lie not in the child, but in their environment. We can reach our personal potential better in an an environment of acceptance and understanding, and that is what I hope to provide my child, regardless of who she becomes. I want my daughter to learn that errors are a normal part of growth and and mistakes can be opportunities. I want her to learn to never stop looking for ways to grow as a human being and better enjoy this world’s wonder. If she is not like me, I will try to the best of my ability to understand her point of view. If she is like me, she will have a mother who “gets” just how intense, disabling, fascinating and unusual this life can be for people like us. I can only imagine who she will grow to be, and I will savor watching every bit of her unique personality unfold!

Advice in a Supermarket

You never know what you might find at the supermarket. Like the other day for instance, when I was out grocery shopping, which I now pretty much consider a “vacation”. I was in the canned vegetable aisle looking at what beans I could purchase with WIC (yep, cause we’re doing what we can but we’re still poor). An associate stocking the shelves across from me noticed my WIC book and asked, “Pregnant? Or have you already had one?”. “I have one.” While I was hoping I didn’t honestly still look pregnant, he mentioned he had seven kids. SEVEN KIDS.

So I told him he ought to write a book cause he probably knows more than a lot of people. “Would you like a parenting tip?”, he asked, and of course I did because I need all the help I can get. “Just trust your instincts.”, he said. “But I don’t have any instincts.” “You do, they’ll come out.” I said something like “You don’t understand–I don’t have instincts for anything. I’m high-functioning Autistic. Asperger’s.” He said, “Really? I have Aspergers!” OH. Here was a guy who managed to be raising SEVEN KIDS–with Aspergers. He also told me he was about 48, but he looked about 38, which must be another common Aspie trait. (I haven’t physically changed much from age 15, minus some baby fat and plus some stress lines, so that’s how old I look to some people. )

We talked for a few minutes in the middle of the store while he filled shelves, about how we frustrated our bosses and how he handled kids. Hearing advice from someone similar to me who obviously was managing fine, and finding a kindred soul in such a random place, was a bit of an eye-opener to me. I DID have instincts, however shaky I was in discovering them. We are different but we are human beings, we have the instincts we need when it comes down to it. Can I decipher “Waaaahhh” from “Aaaaaaah”? Nope. But I do rush to that kiddo the second I think something is wrong with her. We aren’t “broken”, we can do what’s best for our kids. Aspies just need a little more help, time, confidence and information than some. So keep an eye out, you never know what friendly soul might be out there that does know just what you’re going through.

My Birth Story

A Series of Unfortunate Surprises…

TMI warning ahead!
I had a “birth plan”. I thought I was prepared, because in my Aspie mind, that is what I do.

I prepare for anything and everything so that I’m not unable to cope when something different happens. I wanted no meds, to go into labor naturally, no catheter, and for my husband to be present but not watching from the “business end”. I was like, “go me! I can deal with this!”. *cue my hysterical laughter now* Hahaha!!

Two weeks before my due date, I randomly developed pre-eclampsia (pregnancy-induced high blood pressure). This was the first surprise, since I was in my twenties, a healthy weight, ate well and exercised, and had never had hypertension in my life.

Then surprise, the due date came and went and I hadn’t gone into labor…so the Doc said I had better be induced since high B.P. could endanger me and the baby.

Surprise #3: I was at the hospital in the evening, being induced, expecting to be able to handle the pain–since so many other moms can. I wanted to avoid an epidural, but the Pitocin-laced contractions were unbearable FAST, so that sucker went in ASAP. And so did a catheter, which stung like hell even with the epidural. The Pitocin had to be turned up until labor progressed super-fast, then my water broke just minutes before the doc got there.

Someone told my husband to “grab a leg”, and then shocker #5, there he was holding my numb leg up right at the fun end of delivery. Which I honestly couldn’t have cared less about at the time since Surprise #6 was that the EPIDURAL DIDN’T @$%!! WORK on the entire vaginal area. So I was basically unable to feel my contractions properly or move my lower half, but still in mind-numbing pain which eventually made me vomit. Fan.Tastic.

I have no idea how long it took, but finally, out popped a brunette head, and the surprise of the rest of my little daughter wriggling out in just seconds, while someone cried “She’s here!”. Never had I felt such relief, exhaustion and happiness simultaneously. That was no surprise. She was amazing–healthy and strong and beautiful.

But there were some dark days ahead. Struggles with breastfeeding, pain, Post-Partum Depression and horrible anxiety, continued hypertension, insomnia (even though I was completely exhausted), being unable bond with my baby due to the PPD, and the inevitable abrupt crash of all the hormones that had made me actually feel “normal” during pregnancy. More explanation will come in later posts.

Which leads me to part two:

I’m not saying my birth experience was even out of the norm, and that there aren’t other moms who have had it much worse, or even lost their babies. I realize what a blessing it is to have had no actual emergencies.

I’m just saying that I couldn’t handle it. You can have PTSD-style flashbacks long after birth–another surprise that I wasn’t expecting. It was traumatizing to me, and I only fully realized this almost 6 weeks after the fact. I realized how mortified I was to have everything on full display for hours under bright lights, while I lost all control of my emotions from the pain and cussed and screamed probably loud enough to hear in the next department. How frustrated I was that I couldn’t naturally go into labor, delivering without the use of drugs. How angry I was that I was frightened into using IV antibiotics that were 99% unnecessary, and that my epidural was completely ineffective. How horrified I was at the indescribable, traumatizing pain of being forced to push something way too large out of the most sensitive part of my body–and that I tore down AND sideways, and it still hurts sometimes. How much it hurt, for days, to have a catheter shoved back in because I was completely unable to urinate afterwards. And mainly how disappointed I was with my body for essentially denying me the birth I had “planned” for. It just…struck me out of the blue, at 4AM. I needed to mourn the loss of what could have been a relatively mellow, natural birth but was instead the most terrible pain and horrible recovery I’ve ever experienced.

I don’t want to scare any pregnant ladies reading this. Birth is a very individual thing and some women experience actual bliss during delivery! I doubt even if I had another child, that it would be that bad again.
But let it be known that with something as monumental and complex as childbirth, anything can happen. So, the lesson I learned:

  • Plans will have to change a little or a LOT more often than not, and you need to be prepared for that possibility to happen to you–so that if it DOES, you are less anxious about it.

If your plans do work out–I’m happy for you. And may more births be non-traumatic!

Also, check out this article. This lady deserves credit for getting her story out there: My Non-Traumatic Birth Was Traumatic To Me