The Unoptional Grit of the Special Needs Parent

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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.

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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