The Broken, the Wild, and the Naked

Yesterday was one of those Mondays that takes the prize for Mondaying so good it shames other Mondays. It was memorable enough to write down and bad enough that I needed to write it down.

 

It, however, really made me realize the awesomeness of my kids, whose bravery, strength and kindness left me astounded.

Our morning involved throwing, screaming and a poop puddle. After work and school, there was all the joy of screaming the whole way home in the middle of the after-school traffic rush. We had a relatively calm dinner, but we were all pretty tired and over it by the time my husband got home. He, having used grand intuition, brought me some chocolate and took the kids for a walk (Note: get you a man who can do both).  So, I took my king size candy bar, my tired ass and my phone with the open Netflix app upstairs, because it was definitely an “Efff that, I’m eating chocolate” kinda day.

The peace, however, was short-lived as I heard the doorbell and welcomed my sweet, cranky babies ready to fight me to the death for every step of bedtime. We also needed stuff from COSTCO, leaving me to man the fort solo while my husband took care of this. Anyways, considering that the kids had stuffy noses, I decided to do what we always do when they’re sick: fill the bath just a bit, but run the shower so the steam could help with the congestion. I also decided to jump in because when you’re in a special needs household (1) there’s no such thing as privacy and (2) maximizing efficiency means everything.

So, my daughter and I jump into the bath/shower and my son is sitting on the toilet (this is totally normal btw). I keep the shower curtain open a bit so I can see him and repeatedly pop my head out to ask if he needs help. My daughter, being both incredibly sweet and a massive smart ass, also pops her head out to ask my son if he’s okay and to say “great job, buddy.” So, I tell her to be careful because the shower is slippery and the rubber mat is outside, but I honestly don’t think much of it because she often uses the shower like a big girl and is totally fine. I, then, drain the bath water because it’s getting cool and she just fills a little cup with water and pours its contents onto another cup, chill and charming as could be.

Then, as I turn to get something from the caddy, in a friggin’ thousandth of a second, she suddenly slips, comes down hard on the porcelain soap mount next to her, cracks it, and next thing I know, she’s on the floor of the bath and there’s blood everywhere. I pick her up and see exposed flesh next to her ear with blood gushing down to her collarbone (though I later find the wound is much smaller). I was afraid a vein or artery had been severed and had no time to inspect the wound. So I take her out in my arms, run to get my phone, race to my bedroom and find a clean bed sheet to press against her bloody little face.

My son, luckily, follows me into the bedroom and sits on the bed to polish off the king size chocolate bar I left moments before. So, here I am, buck naked, sitting on the floor with my toddler on my lap putting pressure on a gushing wound trying to call 911. The call goes through, I tell them the problem through bitter screams and my daughter’s flailing arms touch the phone’s screen ending the call. I manage to get them back, they tell me to not move and assure me they’re on the way. Within minutes, I hear the doorbell and yell that we’re upstairs. I guess the door was open, because suddenly, six firefighters are standing before naked me and my naked children and I’m trying my darnest to keep pressure on my daughter’s wound whilst trying to cover myself with a bloody bed sheet.

Fortunately, though we all feel awkward AF, one of them grabs the comforter and brings it over me. They grab my daughter and start checking her wound and her vitals and allow me the privacy to get decent. Thankfully, she’s ok, but I did have to take her to the ER to get stitches. The staff was incredibly helpful and professional, but given the nature of stitching up a 2 year old, the process took a while. So, with all the numbing agents, observation, calming and actual stitching, we were there until 1 a.m. It was exhausting, to say the least, but at the end, she’s safe and we made it past this.

All in all though, my children schooled me big time. My son stepped up, following directions and keeping his calm as his sister bled and screamed, his mother became a naked wreck and firefighters crowded his little house. My little girl, who is reckless, wild and sassy, kept (relatively) calm on my lap, listened and was so brave through the whole ordeal, that I really can’t believe she’s only two. Not only that, but the two of them comforted each other, making each other laugh and enjoying each other’s company. They held hands after the massive car tantrum without needing me to ask that they apologize. My son told me this morning that “baby had an ouchie, she went to the hospital” as he was brought to giggles by getting his little sister’s attention and getting her to giggle in return.

So it was like this, through poop puddles, blood and drama, that I saw my two children getting older and becoming pretty amazing human beings. It was like this that it became clear that they love one another and are the stronger for it.

And it was also like this that my soap mount broke, my wild child got her first set of stitches and the number of men who’ve seen me naked swiftly jumped from one to seven.

The Unoptional Grit of the Special Needs Parent

Photo Source

It’s been too long since I’ve last written. Since my last post, I went to Florida to join my husband on a work trip, began the process of resuming my long lost undergrad and began a new part-time position. On top of that, I’ve had to embark on a very long, time-consuming and emotionally draining fight for my son to start ABA in-center therapy, something I’d taken for granted given his spot on the waitlist has come up. But some issue between the insurance and provider is delaying the place that has been reserved for him for so long. He has been receiving in-home therapy for almost a year now, but it is time for him to move on and to receive more hours.  

That is what inspired this post: the non-stop, always going, never ending intensity of being a special needs parent. It’s not a complaint, it’s an acknowledgement. It’s the fact that being gritty is no longer an option, it’s a requirement. When I was a college student and felt exhausted, there was always a finish line: midterms, finals, etc. Now, not so much. Sometimes I’m driving my kids to school and I’m thinking about that call I have to make to the Billing Specialist, then the Costumer Advocate, then the Clinical liaison, etc. And it’s gone round and round in circles.  When I’m not playing with the kids, serving as a referee between them, cooking, cleaning, at work, etc, I’m filling out forms or on the phone with someone with some relation to Autism services. It’s endless and and draining. And I don’t have the answer yet, but I have gathered a few insights that make it bearable…beautiful and funny even. So,  here are my tips for not losing one’s shit (altogether) as a special needs parent: 

1) Invent finish lines

I know it’s one thing after the next, but revel in the little victories: finishing that million-page form, finally getting approval for a new therapy, overcoming some little challenge your kid’s had (like a fear of the bath), etc. Reach these tiny finish lines and find some way of resting, celebrating and forgetting everything else for just a few hours.  

2) Know yourself and your needs

I was a stay-at-home mom and now I am a working mom. Both are really hard and have their own particular set of challenges. I know that because of the way my brain works and its tendency to obsess about things, I need to get out of the house. I do a lot better with a job and my kids do a lot better being in school. We have a channel for our energy and a distraction from our worries. I get to write and learn about a field I love and they get to play outside and learn things appropriate to their age. We get to engage with other people and to learn from them. We come home tired, but calmer and ready to enjoy each other’s company. Some people may do better staying at home, they may thrive in an environment over which they have more control. They may not like the madness of driving and drop offs and school forms. It depends on your personality and your family’s needs, but you need to know yourself well enough to find the circumstance that will put you in the best head space to be a freakin’ superhero  

3)Find things for which to be thankful

I know this is a bit annoying because you’re every bit entitled to feeling frustrated without having some asshole point out “but look, you have bla blah blah.” But seriously, just over a year ago I lived in Australia and getting the services we’re getting now for our son would have left us bankrupt. Getting the in-center therapy we’re fighting for at the moment was as likely as getting super powers after being bitten by one of the many deadly things living in our backyard. We could’ve never afforded to buy a house (with a median price of about $829,000 USD, who can?) and the rentals generally didn’t even have air conditioning or dryers, even for the modest price of more than half an average household income after taxes. There is a LONG way to go for the healthcare system in the US to be what it ought to be, but when it comes to kids with special needs, we’re doing better than most people expect. The government in AU gave kids with Autism something like 12k’s over 6 years and private insurance covered next to nothing. Those of us in the special needs world know that 12k’s doesn’t begin to cover a few months of ABA therapy. So, as frustrated as I am sometimes, I know that our standard of living, son’s progress and general mental health are all a billion times better than before. So, be frustrated, but also consider the wins you’ve had and how much of a triumph these wins would mean for special needs parents in other places. Then keep fighting because our little ones still deserve better.   

4) Ask for help and accept it

There are a lot of organizations made to help parents of special needs kids (P2P, Autism Society, CBC Boards, etc). There are advocates, caseworkers, legal teams, fellow parents, educators and many other super smart, dedicated folks. These people know what they’re doing and take it quite seriously, so find them and make them a part of your team. Find friends and family who are on board with your kids’ needs and accept their offers to babysit or cook a meal or run errands, whatever will take a bit off your plate.  

5) Sleep!

Sleep as much as you can (which I know isn’t much). I know that there is always something to do, but if you can get some moderate rest, tackling the mountain of work before you will be a lot easier. You’ll also be in a better mood and more efficient with the little time you have,. 

6) Have an emotional outlet

Talk to other parents in a similar situation, to a trusted friend, a pastor, a therapist, etc. Don’t bottle it up: have a friggin’ cry about it now and again, turn up the stereo in your car when you’re driving alone and sing along to a very angry song full of very naughty words (trust me, it works). Have some way of dealing with the frustration you’re very entitled to having, but please, deal with it before the next telemarketer calls. 

 7) Know your worth

My friends, having to be always on call, always fighting and always feeling like it’s never enough, will have a toll on us. But you know what? It makes really amazing, empathetic, strong, gritty, bad-ass people. We learn to never quit, we learn to push ourselves and we learn to fight for others. A special needs parent, as tired as s/he is, will fight for others because s/he knows the struggle.

We also learn to be vulnerable, and humble, and raw. We learn to ask for help and let our guard down. We learn to let other people have a chance to be strong and virtuous. Being who we are and doing what we do, given that we find ways to take care of ourselves, will make us more truly human and it will teach our kids exactly what we need them to learn: that when it feels like all the air is leaving the room and everything is falling apart, we have the strength to move forward and, even when we don’t, we have the people to help us carry on. In this marathon we can teach our little ones, who already have so much to carry, how to never give up.

Aristotle, Autism, and ABA

Once upon a time, I began to realize my amazing first-born stood out more than I thought. I knew he was special, with his infectious affection and incredible jump-up-and-down-arm-flapping excitement. I knew he saw the world with passion; he reacted severely both in joy and displeasure. I knew his heart was full and his mind was active, yet as he continued to grow, the development of his abilities was unlike other children. He knew his alphabet and numbers by a few months after his second birthday, but he couldn’t string two words together. He could put together a 24 piece puzzle, but he couldn’t hear “no” without banging his head with force, frustration and anger. After my father visited and gently advised that I check just to be safe, I read and read and didn’t sleep for days. I knew my son was Autistic. I also knew that it wasn’t a tragedy. I knew that it meant more effort to teach somethings, but it also meant gifts, lessons and joy that I wouldn’t know otherwise. Still, the reality of parenting a special child is striking. It’s still unsettling and filled with uncertainty.

So I continued to learn all I could, both about the condition and about my son’s uniqueness. Most of all though, I had to learn how to balance apparent opposites in my parenting and, honestly,  in all other aspects of my life. I had to learn how to balance conviction and flexibility, discipline and gentility, endurance and self-care.

I realize that all of us must learn this, it’s called virtue. It’s those habits of the mind that improve us, our relationships and our communities. It’s that life-long effort to overcome our weakness and impulsiveness in favor of prudence and consistency. It’s the gift of responding properly to those things outside of ourselves. And, of course, this is an obligation and a gift to all people, but having a child on the spectrum moved me with particular force to strive for virtue. Autism taught me about patience and endurance. It taught about conviction and fortitude because nothing will move us to get our act together like our children will. Moreover, in learning how to help my son with his areas of difficulty through ABA principles,  I learned a thing or two about human behavior in general. So, for all of us  who sometimes feel discouraged, exhausted or hopeless, here is what neurodiversity can do, here is what Autism taught me about virtue:

It taught me that every behavior has a motive and an end, it is not without reason.

Not unlike Aristotle’s account of personhood, Applied Behavioral Analysis tells us that every act seeks an end, we get something out of it, we seek some good. With my son, I learned to analyze why he might rock, arm flap or head bang. Whether it was motivated by seeking attention, avoiding a task,  being over-stimulated, etc. The same is true for all people, we do things for a reason, we are motivated to achieve some good, so we act, we do so repeatedly and we become habituated to have certain responses. Learning about it taught me that I had options for coping with stress, communicating my concerns and avoiding harmful situations.

It taught me to be patient.

Teaching my boy not to be afraid of the toilet took us several months of desensitization, as did bath time, haircuts and other fairly common activities. Sometimes things that are easy for other people take me longer too. It’s part of the human condition to not be great at everything immediately. Some things take time. The greatest things take time and effort. This teaches us gratitude, humility and fortitude.

It taught me to exercise self-care 

As parents, we sometimes forget that we too need care. As autism parents, planning, observing and being super consistent sometimes results in unshaven armpits, severe sleep deprivation, poor eating habits, etc, etc, etc. I stopped being important to myself in the midst of caring for my children and my home suffered. We can’t serve the most important people if there’s nothing left in us. Caring for ourselves, and being in proper health, are acts of humility, in accepting that we have limitations. Caring for ourselves is an act of love, giving those we serve the best that we have.

It taught me to speak with conviction and to not be afraid

I used to be a pansy, afraid of hurting people’s feelings or of making them feel uncomfortable. I still care about not hurting people, but I care much more about forming a positive and nurturing environment for my children. It’s okay for people to see the world differently than I do, but if this worldview involves doing things that hinder the progress of my children, their trust in me or the peace we need to move forward, I am no longer shy about speaking up. Moreover, it is my responsibility to protect my children from all harm, so now I not only speak but actively exclude those environments that cause regression and anxiety in my little family. My babies come first. Just as my son can choose to lose screen time with his behavior, so can those around me lose the privilege of my children’s company with their behavior.

It taught me to be a mother

Honestly, I really sucked at being consistent, disciplined and bold. Having to be up and about 24/7, insistent about what my children need, and having to apply principles consistently moment by moment, day by day, actually made me a better mother. I probably would’ve just winged it otherwise just because I’m naturally that disorganized. But survival mode kicked in, and now I even plan meals, shower daily, shave my legs and try to budget. I even find time to write about it now and again.

It taught me about my own Asperger’s  

Through observation of my own little Einstein, I saw so many oddities that I engaged in as a child. I saw myself in many of his self-regulatory and repetitive behaviors. I saw myself in his sensibility, hyper-focus, and yes, in his intellectual ability.  As I read, I learned about the “gender gap” in Asperger’s and High-functioning Autism and why Asperger’s looks different in women (and why we are grossly underdiagnosed). I will write more about it next time, but I must say now, it saved by life to know the “why” to so many things I wondered at (and disliked) about myself.

There is really too much to write that being Christof’s mom has taught me, but this is a short list to shout to the world that Autism is NOT a tragedy and that it can teach us so much about our humanity. More so, it can teach us so much about being better at our humanity.

Photo by Jose H. Guardiola, Jr.

This post has been republished on The Mighty as 6 Things Being the Mom of an Autistic Child Has Taught Me

Because I might as well

Long ago, I began writing about things that mattered to me: learning to be a grown-up, family, marriage, culture etc. Then, I had little people…….. adorable little people, but still, incredibly-demanding-life-changing-no-time-for-bathroom-breaks little people. It was the best damn thing that ever happened to me in every single way, but it didn’t leave much time to write. It was a shame really because I don’t think I’ve ever had so much to say, at least not that mattered so much, that was so fully immersive and transformative. There never was something that I learned so whole-heartedly, with so much difficulty and with so much legitimate growth.

Then, came my son’s Autism diagnosis, a process which I’ll one day share with you (hopefully in the not too distant future). It introduced a whole new level of— everything. It was new pain, anxiety, self-doubt, anger, sleeplessness… But it was also new parts of my heart and my intellect that were brought to light. It was new knowledge, hope, endurance, and probably most importantly: BALLS. It was the edge and conviction that took a moderately timid people-pleaser into a mama bear full of conviction, curiosity and limitlessness. It was, in so many ways, exactly what I needed to get my head out of my ass  in whatever way I was keeping it there (and trust me, we always find a way to keep it partially submerged..).

So, though my schedule is still far from what I’d like, I’m certain that sharing some of this journey to the best of my ability is something I need to do. There are so many things I wish I knew when the word “Autism” was first used in the same sentence with my son’s name. There are so many things I’ve learned from that faithful day that have brought hope, solace and purpose, things that I long to write for the sake of other parents who find themselves where I once was.

Finally, if there’s one truth I’ve found and must contribute to is that we are not alone. Those of us living on and surrounding the spectrum have each other’s back. I hope that my voice will be one in the midst of a wonderful, vibrant and supportive community.

So, here goes nothing…