The Bloggy Bit
I cringe when people say, “You’d never know your daughter has Autism”. Some days I wish our lives weren’t impacted by Autism at all. Some days I wish her Autism was more obvious. I know that sounds crazy, but it is true. If her disability impaired her more regularly, more consistently, in more severe ways, I feel our home would have more predictability.
It seems that I am confronted with the reality of my daughter’s disabilities weekly. Various situations trigger the familiar feeling of being sucker-punched in the gut as, once again, I am catapulted closer to full recognition that my daughter is different. Sometimes it’s the public meltdown or the flapping hands or her stilted gait. Tonight, it was Caroline’s Cart.
If you are unfamiliar with Caroline’s Cart, follow the link here to learn more. Basically, it’s a cart that Target provides for larger special needs children. When I first spotted one at our local Target, I assumed physically disabled individuals would utilize them and I thought it was a great idea. When my daughter first spotted one tonight at our local Target, she assumed it was designed just for her.
KBear does have developmental dyspraxia, some hypotonia, and sensory issues, which do make her tolerance of physical activity to be minimal. She also has some autistic traits, which make her inflexible and perseverative. But, these issues are hidden. And they can be particularly hidden because she is also cognitively gifted. She (sometimes) appears typical. She (sometimes) appears smarter than the average bear. She appears able to walk throughout a store without issue. And so, while sitting in Caroline’s Cart, she appears to be stealing a modified medically necessary piece of equipment out from underneath someone who really needs it.
As KBear approached the cart after having already made it through 2 previous stores, I could sense that her senses were near overload. She gave me all the red flags and signs that a meltdown was possible. She indicated that she was tired and needed to sit. She no longer fits in “regular” baby or child seats. She pointed at Caroline’s Cart and, with full baby-voice on (one of her cues that she’s had enough), she said, “Mine. KBear need.”
95% of me wanted to say, “You don’t really need that cart. It’s made for people with disabilities.” 95% of me didn’t want to fully acknowledge that my daughter does, actually have a disability. 95% of me feared the assumptions and judgments that others might send our way because she doesn’t look like she needs a modified cart.
But, the other 5% of me said, “OK. Get in,” because it was able to acknowledge that without the cart, she’d meltdown and her hypotonic, dyspraxic legs just couldn’t actually walk her through the store, even though they look like they should be able to.
That 5% of me did, once again and with the accompanying sinking feeling in my gut, accept that she does indeed have a disability. It can be very confusing and difficult to accept, because at some points she can have the most quick-witted, mature sense of humor or the deepest, most philosophical conversation about the meaning of life. At some moments, it becomes easy to deny that she also has these disabilities. But, that 5% of me said, “Nope, she is humorous and philosophical and needs a special needs cart.
That 5% of me also decided to plow forward into judgment. If I claim to want hidden disabilities to become visible, acknowledged, and accepted, then I need to stop hiding them. I need to stand in my own discomfort and challenge the typical concept of what special needs means. I need to show the world that my daughter can appear “normal”, can be gifted, and can also need Caroline’s Cart.
We did, indeed, receive several judgmental looks from passers-by. And even though I like to pretend that those looks don’t bother me, they do a little. I found myself justifying the use of the cart over and over in my own head. But, it was a step. A step toward more fully accepting my daughter as she is. A step toward educating people that disabilities come in all shapes and sizes.
And, even if none of those things happened, at least we avoided a meltdown in the middle of Target.
The most exhausting thing for me as a parent to a higher needs child is that I ALWAYS have to be “on”. There is very little grace within the space of my parenting. Let me clarify, I am generally pretty self-compassionate and can feel and accept grace. My daughter, however, not so much.
Differently wired kids often feed on the energy of the emotional states of those around them. So, when I’m having a stressed-out, overly-tired, I-haven’t-gotten-enough-alone-time-in-the-past-10-years-of-my-life-and-so-I’m-crabby kind of day, my daughter picks up on it and sucks it all in. Now, she doesn’t consciously know that she’s doing this, so she just feels as icky as I do, but without understanding why. And when she feels icky, she meltsdown and acts out. So, the days when I feel my worst, are the days she will behave her worst. Exhausting.
And differently wired kids are often not very flexible. On the days when I’m feeling indecisive and I say, “well, maybe we’ll grab a burger for lunch,” but then decide to have a picnic of PB&J instead, my daughter will inevitably shout, “But you PROMISED burgers! You’re a LIAR!” and then a meltdown will ensue. So, the days when I feel least like being structured and assertively making decisions, are the days when I’ll have to be strong and structured in response to her worst behaviors. Exhausting.
And differently wired kids often do not deal with boredom or lack of structure very well. On the days when I’m wanting to check-out of parenting just a little, she will get bored and inadvertently instigate misbehavior and arguments with her brothers. So, the days when I feel least like parenting are the days when I have to parent the most. Exhausting.
And I know that parents of typical children still have to parent when they don’t feel like it and still have to deal with crabby kids on the days they are crabby. I do understand that. But, I also know that I could have low-key days with my boys because they can tolerate entertaining themselves for a day. And, in fact, my 11 year old LOVES those days. And I know that a crabby neuro-typical kid looks different than a melting down, crabby differently wired kid.
With a differently wired kiddo like my daughter, I pay extra for my parenting failures. It feels like I can’t have an “off” day because an off day quickly turns into a horrific day. It feels like I can’t be sick, because sick days quickly turn into horrific days. It feels like there’s no space for grace. I would give anything for a grace period, or a day where I could simply coast through it with minimal effort. But, I can’t. And that’s the most exhausting thing.
My daughter hulks out. Seriously. Clothes get ripped. She grows about 500 times stronger than usual. Her face contorts into a scary, ugly mask of rage. She attacks anyone and everyone standing in her way. She doesn’t recognize her native language and speaks in grunts and one word answers. I’m pretty sure she even turned green on one occasion.
And when she hulks out (or flips, as we generally call it in our household), it becomes difficult to remember that she’s really just my little KBear. In fact, most of the time I start wondering if the real her is the hulk her and those other glimpses of a human child are an illusion. I become discouraged and angry, and often end up hulking out myself – though with a bit more self-restraint than K-Hulk is capable of. I begin to think that she’s trying to be defiant, that she is simply a brat, that I somehow just need to be more authoritative, demanding, louder, angrier, and she’ll snap into shape.
Except, that approach didn’t ever work to turn Hulk back into Banner. And it never works to turn KBear back to her normal self. And here’s why. Because Hulk can’t think straight when he’s Hulking out and neither can my KBear.
Jon had been fooling around, taking some pictures of the kids one day. After the impromptu photo shoot, he and the 3 kids were gathered around looking through the pictures. There was a series of oddly exposed shots and Jon was generally deleting them pretty quickly. When he came to this one, he had his finger on the trash button when KBear shouted, “Wait! Stop!”
Unsure what the deal was, Jon just looked at her quizzically, until KBear said, “That’s me. That’s what it feels like when I flip.”
Jon looked back at the picture and gave KBear a hug.
On the outside, we see a giant monster of rage and destruction. On the inside, KBear feels like that monster is also attacking her. She feels like she has 3 heads all pulling her in 500 different directions and she can’t see straight, let alone think straight, let alone choose to behave appropriately. Her neurons are firing like mad, her senses are overloaded and spinning, she’s in a thousand different kinds of pain. Of course she doesn’t listen to me. She can’t even hear me.
On my good days, I can remember that. I can see past the Hulk and have compassion for my baby who’s trapped inside.
But, after a few good days, or a few too many encounters with K-Hulk, or a few too many of my own stressors, all I can see is the green and rageful monster. And I’m back where I started, thinking mean, unhelpful, blaming thoughts. But thankfully, on my best days, I can see past my own Hulk, too, and have compassion for the tired and loving mom who’s trapped inside.
A couple of years ago, I played along with one of those slightly corny facebook challenges. I often just disregard these things, but this one was about thankfulness and gratitude. And, since I regularly encourage my clients to keep gratitude journals and choose to focus their minds on positive things, I thought I should practice what I preach, so I hopped on the facebook challenge bandwagon.
The first few days I think I wrote some pretty generic things (thought honestly I can’t remember). As a family we were right in the midst of some pretty significant challenges with our daughter’s SPD. We’d only started receiving services a few months before and both my husband and I were trying to make sense of it all and were grieving the diagnosis. I wasn’t feeling very grateful, really. I was mostly feeling tired and overwhelmed and emotional. And then, I decided to add a bit of challenge to the challenge and I wrote the following:
Day 3: Today I am choosing to be thankful for some of the tough stuff. I admit that I often feel discouraged and overwhelmed in the midst of the following, which is entirely the reason that I am choosing to work at being grateful for them. So, here goes.
1) I am thankful for Sensory Processing Disorder. Don't get me wrong, there is a large part of me that wishes this disorder had never touched my family, or to be more honest, that it simply didn't exist. But, I am thankful for the explanation of my daughter's behaviors and idiosyncracies that has nothing to do with blaming my daughter, my husband, or myself. I am thankful that I am learning to see her behaviors through the lens of "mixed up wiring", sensory overload, or sensory deprivation rather than believing she's a spoiled brat, or that I am a bad mom, or that my husband is a bad dad. We aren't. Sure, none of us is perfect, but she struggles because of her neurological system, not because any of us screwed up or are inherently awful. I am thankful that this disorder is gaining understanding, and that this disorder has brought us into contact with a fantastic Occupational Therapist and has encouraged us to more creatively problem solve and find solutions focused at the actual problem rather than trying to "parent her out of it" or wait til she grows out of it. I am thankful that this disorder has continued to broaden our support network so we are no longer trying to manage the symptoms entirely on our own.
2) I am thankful for my daughter's meltdowns. These meltdowns are definitely not pretty and usually involve some type of destruction, hitting, kicking, shouting mean things, you name it. Her system gets overloaded and meltdown happens. These are exhausting. It is exhausting to try to figure out how to keep her safe while also protecting my other two children, not to mention myself. And I really wish I never had to feel the helpless heartache as I watch my intelligent and beautiful and thoughtful and sweet and generous daughter transform before my eyes, knowing that she's in hundreds of different kinds of pain and all I can do is wait it out. I want nothing more than to nurture her at these times, mother her, hug her, hold her, but all these things make the meltdowns and her pain worse. So I simply have to sit and wait, usually with tears running down my own face and my arms aching because they can't console and comfort her. So, in many ways, these meltdowns are not fun. But I am thankful that by watching her meltdowns we can learn more of what she needs. I am thankful that her meltdowns have increased my empathy for other parents and decreased my judgment of them. I am thankful that her meltdowns have prompted me to rest in the sanctuary of my God in ways that I have never before had to or chosen to. And I am thankful that her meltdowns are teaching me how to be more of what I believe I am called to be - a living sanctuary for all those who cross my path.
3) I am thankful that most people simply don't "get it". Sure, it can be lonely in some ways, and isolating, and again, exhausting. But I am thankful that most people don't "get it" because they have not had to face the challenges of SPD personally. I am thankful that most people are neurotypical and function well. I am also thankful because most people don't "get" that my daughter struggles with SPD. They don't "get it" because she (generally) manages to hold it all together when out and about and then melts down with overload when she's at home. Really, only my husband, my two sons, myself, and (of course) my daughter have ever experienced her full blown meltdowns. I am thankful for the hope that this brings, because with the right tools and modifications, she will be just fine. She proves every day that she can be just fine. And I am thankful that her meltdowns are reserved for me. It means that she feels fully, completely, unquestionably, and unconditionally loved and safe with me. It means that I am doing my job. Despite my mistakes and my own meltdowns and times I have been far less than mother of the year, she can totally and completely be all of herself with me. I am thankful that the effort I put in to prayerfully being her living sanctuary are felt by her.
At the end of the original FB post, I had written something along the lines of writing this mostly as a reminder to myself. I find that as I re-read it, I am thankful that time, trial and error, and helpful professionals have helped us understand my daughter’s needs better. But, I also find that I continue to have those days, weeks, months in which the struggle is very real and it is hard to stay grateful. And so, I re-post this as a reminder that there are always ways to reframe a situation to see it from a different angle. And mostly, I re-post as a reminder to myself to always revisit gratitude.
The other day, Jon came home from a shopping trip with KBear and said that a woman had started up a conversation with KBear, which went as follows:
Woman – You are so beautiful! You could be a model! Do you want to be a model?
KBear – I want to be a doctor or an engineer.
Woman – But you are just so pretty. You could be a model!
KBear – I want to be a doctor or an engineer.
Woman – But, don’t you want to be a model?
KBear (to Jon) – I don’t want to talk to this person anymore.
My first reaction was to laugh hysterically and feel a sense of pride. That’s my girl!
My second reaction was to feel a sense of awe for the advantage of KBear’s autism-y type ways. How fantabulous that her social difficulties can also allow her to simply say what she thinks and write off silly strangers who are trying to convince her that what she wants isn’t legitimate or valuable. My younger life could have been so much simpler had I been able to be more oblivious to other people’s reactions. I certainly would have found my own way of being true to myself much more quickly had I cared less about hurting other people’s feelings. KBear’s autism tendencies can make social situations challenging for her, but they also innately provide her a level of differentiation within relationships that I am regularly trying to instill in my own life and in the lives of my therapy clients.
My third reaction was to feel a sense of sadness that the world continues to pass on these archaic and nonsensical messages to my children. Messages that there’d be more value in a girl to be a model than to be a doctor or an engineer. I was the smart girl in class who intuitively knew I should hide my intelligence if I wanted to fit in. I was the girl in class who finished her tests about 15 minutes before anyone else but pretended to keep working on them because no one likes a know-it-all. I was the girl in high school who knew answers to the questions teachers were asking, but kept quiet because the other boys and girls looked confused, so I should be too. I was the girl in class who pretended that exams or papers were difficult because everyone else said they were and I certainly didn’t want to make them feel bad that I felt the test was easy. I was the young woman who allowed my own opinions to sit quietly in the background so the young men around me wouldn’t feel intimidated. I played stupider than I am. And by doing all these things, I actually began to believe I’m stupider than I am. I began to doubt my knowledge, my thoughts, my own voice.
Thank God all that changed. I’d thought it’d partly changed because I’m growing older and wiser. But I’d also thought it’d changed because the world is changing and is no longer expecting girls to play dumb in order to appear more attractive. I thought my part of the world no longer valued a girls’ appearance more than her intelligence. But, the truth is, I guess I knew all along that the world still has changing to do. Sometimes it just feels easier to pretend that my daughter won’t have to face the same challenges that I did. So, I cozy up to naiveté to avoid the sadness, until I hear that some woman was trying to convince my daughter that being a model would be better than being a doctor or an engineer. And the sadness rushes in.
But then I go back to my second reaction. Thank God KBear can think a little black and white and can simply write off silly people touting ignorant ideologies. Thank Goodness her wiring allows her to be herself and choose the people she wants to listen to and disregard the people she doesn’t want to listen to. And for all the times when I feel twinges of loss and sadness as I watch her try to navigate our complex social world, I will remind myself of the flipside and the positives of her wiring.
For all of you who are hiding your true intelligence or talents – take a lesson from KBear and learn to be a bit more autistic!
“Your playing small does not serve the World.
There is nothing enlightening about shrinking
so that other people won’t feel unsure around you. . .
As we let our own Light shine,
we consciously give other people permission to do the same.
As we are liberated from our own fear,
our presence automatically liberates others.
”
