Sometimes when I’m scrolling down my Facebook feed, I spy a cute picture of someone’s child. Usually it’s a captured moment of something fun and typical for that child’s age. The picture that caught my eye today was of a 5-year-old playing in a basketball game. At first, it reminded me of my oldest son, who’d started playing basketball in kindergarten at that same age. Fond memories of little sweaty boys scrambling to get the ball with looks of intense concentration and joy on their faces flashed through my head. Then my brain stutters…
Wait a second… that boy in the picture is the same age as my son, Leo. Like less than 24 hours older. Immediately my heart clenches and tears sting my eyes. I’m suddenly thinking about how that could’ve been Leo, should’ve been Leo in the picture. If autism hadn’t snatched him.
Every time I think I’ve come to terms with having children with a diagnosis or two (or four), I get reminded subtly that I haven’t fully embraced and accepted every single aspect of my children’s disabilities.
I honestly think I’m bearing a grudge against all the disabilities entrenched in my life.
Since I can’t live in a bubble or a cocoon my whole life hiding from these realities, I need to exorcise this grudge. Pretending it doesn’t hurt to see the normalcy and successes of my children’s peers was a quickly learned coping mechanism, but I’m going to be real for a moment here.
For me, it sucks to see the “normalcy” sometimes. The pain can catch you unaware, slicing through your body with bold precision, and sometimes you can’t even catch your breath from the heartache coursing through you. Thoughts swirling in my head as the ache encompasses my soul: Damn you, autism. Damn you, Down syndrome. Damn you, sensory processing disorder. Damn you, apraxia of speech. Damn you all for making it harder for my children to succeed. Damn you for making them scream. Damn you for making them cry. Damn you for making them struggle to stay healthy, to speak, to walk, to make friends, to sit in a classroom calmly, to be included and to be content. And damn you for making me feel weak and inadequate because all I want to do is fix it for them, and I can’t.
So I’ve thought about it: How do you rid yourself of a grudge? I’m sure there’s been oodles of books written on this subject, but my particular grudge is more visceral and not easily forgiven, forgotten or let go. The reality of a disability is always present, always in the forefront of our lives. We don’t forget my daughter, Lily, has Down syndrome and autism. We don’t brush aside the seriousness of keeping her healthy. We see Dasha, who also has Down syndrome, determined to fit in with her peers while those same peers are struggling to even understand her speech. It’s hard to ignore the fact that my almost 6-year-old son, Leo, still can’t talk well. His cries, screams and shouts remind us daily of his frustration, and of course there’s his autism blanketing his every move, his every social interaction and his every thought.
I’ve done well in the past celebrating the little victories. What would seem like small successes to most can be huge for us. It’s progress, and we love progress. Progress means we’re closer to obtaining a goal. Baby steps. Huge leaps and gains are few and far between so we focus on the little triumphs. Like cheering when Dasha did well in dance class instead of misbehaving. Enjoying Leo saying, “I want corn chips, please” appropriately while ignoring the backwards “please chips corn want I” whispered immediately afterwards. Watching Lily getting on the bus without fighting us every step of the way and her sweet smiling face greeting us every. single. morning. Being awed when Reagan gets a 32 on his ACT and not focusing on the immature “incident” with his twin brother at school during class where he overreacts to the teasing his twin doled out. And praising Kaelan for remembering to feed his reptiles without being reminded and doing well during his latest drive-time with his driving instructor instead of focusing on the negative verbiage coming out of his mouth. (I should note that the lines between comparing a teen and a teen with autism get blurrier every day).
I think back to the days before Facebook and other social media. I was buffered from noticing the differences between my kids and other kids their ages. But it’s been harder this time around seeing the Facebook world tout their “Facebook” lives with all their fun-loving, typical family activities. I myself always err on the side of optimism on Facebook. Because really who wouldn’t rather see one of Leo’s spellings or a picture of Dasha in dance class than hear about one of Lily’s latest sh*tastrophes?
So I think the first step I need to do is to forgive autism, Down syndrome, apraxia and sensory processing disorder (plus all the other unmentioned diagnoses) for existing in my children and making many aspects of their lives so much harder for them. I guess my real quandary though is how do I forgive or cease to feel resentment for something that at times is so distressing?
Well, I could remind myself how some of the many traits I adore about my kids wouldn’t be a part of them if they were free of their disabilities. Like how Lily’s and Dasha’s smiley moon eyes and joyful exuberance light up my world. Or Leo’s stilted request for a kiss even though he’s barely verbal. And I suppose some of their more advanced talents may not have flourished if not for their disabilities. For example, Reagan and Leo read and spelled by the time they were 2, and Dasha is quite skilled at American Sign Language. Obsessive-compulsive disorder (OCD) can have benefits particularly when mastering knowledge about a certain favorite subject. So I guess in a way, I’m holding a grudge against a part of my child that they have no control over.
Another idea is to not let the disability overtake my perception of my child. Lily, Leo, Reagan and Kaelan have autism, but I need to remember autism doesn’t have them. They are so much more than autism with so much incredible potential. This could be easily said about someone with Down syndrome as well. Lately I’ve been focusing on the disability more than my children as a whole. I need to alter that way of thinking and change my perspective.
Secondly, I need to accept that the diagnosis or diagnoses will always be a part of my child. Always. This is a tough one because many of the diagnoses we’re dealing with change or evolve as the child ages. The hardships brought on by their disabilities can be seen like mountains and valleys. Some are huge and seem almost unbearable while others are just blips on the screen barely making a dent in the scheme of our lives. It’s recognizing the differences and not letting every difficulty or the comparisons of other’s lives via Facebook or at the elementary school’s winter party escalate into a mountain when it should just be a molehill.
I’ve recently started going back and rereading all the happy, uplifting posts on my personal blog. All the fun times and the gratifying or silly Instagram pictures to remind me how good we have it during some of those low moments. It’s too easy to go to the dark side in moments of frustration, fear and irritation and focus on the negatives, but I know in my heart how truly blessed we are to have these seven amazing, unique kids.
Next, I need to forgive myself for feeling this way. Too often guilt comes into play when we feel anger, resentment or listen to the why me? ringing through our heads as we’re cleaning up another mess of bodily fluid, going deaf while the child flips out over the phone ringing because of his sensory processing issues or once again arguing with a teenager on the spectrum who blatantly and without remorse ignores your rules because he thinks they’re illogical, especially now that he’s officially 18 and therefore an adult.
Finally, I need to find a way to endure those in society who deem my children not worthy of acceptance or inclusion. To witness such fear from others who are terrified of having a child like mine is understandable to some extent but also quite sad. The outright disrespect and bullying that goes on against individuals with disabilities scares me to no end, especially as my kids age and gain some independence. I think these reactions bear heavily on my heart and help fuel the grudge I’m bearing. I do see these misperceptions slowly changing around me, but the change is sluggish and conditional. The community as a whole has a long way to go in changing erroneous ingrained beliefs and removing the stigma about disabilities. Only then can the fear and the contempt be removed and true acceptance become a reality.
Side note: Please let me be clear that I don’t resent anyone’s pictures or status updates of happy or exciting events in their lives on Facebook. I truly enjoy witnessing your joy, but this was just something I needed to write about to help me deal with my harboring grudges and perhaps bring awareness to others who may be in the same spot I am with their child’s disability.
This post originally appeared on Our Version of Normal. You can follow this journey on Facebook here.
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