I’m in a funk – a particularly dark head space that is centered around jealousy. I would normally suffer in silence and be ashamed to openly admit my truth, but I think it’s important to be honest and share because I suspect I’m not alone.
We’ve come so far in many ways with Skyler’s communication and physical health, but the last few months have been full of regression. His smile and laughter seems to have faded, again overshadowed by pain and frustration.
The relentless hitting, slapping and throwing of everything in his path has consumed our household and Skyler’s every waking moment. It’s as if his body has completely disconnected and is rebelling, refusing to take any direction from his mind.
All of this dysregulation compounds the challenges he experiences when just trying to get through his daily routine – eating, dressing, therapy, spelling and showering. So, with no verbal exchange available between us, I’m forced to investigate and dissect every behavior, medication and ailment to figure out what may be causing the spike in his aggression and irritability.
The chaos and physical attacks are exhausting and take a toll on my mental health as well. Scrolling through social media is probably the worst thing to do when your life seems unfair and overwhelming, but I never learn.
Cue the jealously…
The Spelling to Communicate (S2C) program entered our world almost two years ago and watching how quickly Skyler gravitated to it was so exciting. As with any therapy, there are good and bad days – much of which depends on how he is feeling. I am also fully aware that each speller’s journey is unique. Skyler’s significant struggle with motor planning sometimes requires an entire session to focus on hand & eye coordination rather than spelling many words. However, knowing all of this doesn’t make me any less impatient nor stop my prayers and pleading to God to speed up the process.
So, when reading a recent post by a local friend of mine about her son’s rapid success with spelling, I was overcome by ugly, envy induced tears. Her son is a few years older than Skyler and also non-verbal. Late last year, she reached out to me to learn more about the S2C program, and I referred her to our practitioner.
While her son’s motor deficits aren’t as severe as Skyler’s I was still blown away to learn that in only 3.5 months, he is now fluent on the letter boards – he shares his opinions, answers open ended questions and is now even conversing on Zoom with peer spellers from around the U.S.
I honestly couldn’t be happier for her family. What parent in our situation doesn’t dream of finally communicating with their child?
But success stories like these cause an internal battle with all my feelings … elation that another non-speaker found his ‘voice;’ anger that Skyler must work so hard and so long to achieve small gains; sadness that the world he’s forced to live in is often unfair and disregards him for being unable to effectively communicate the way society dictates he should; and fear of the unknown future in store for my son.
I know that good things come to those who have patience and trust in God’s plan and timing, but some days I’m just tired.
Tired of watching my son suffer silently for 19 years – being unable to express his thoughts or opinions.
Tired of waiting to hear or read the words “I love you too, mom. Thank you for never giving up on me.”
Tired of second guessing every decision made on his behalf for fear that it’s not what he wants.
Tired of being jealous and sad when other families witness incredible breakthroughs and our days and years seems stagnant.
Tired of hearing ‘trust the process’ when all I selfishly want is a process to work quickly for once.
I express all of this not to be negative or insinuate that I’ve given up on Skyler or S2C. On the contrary, I know that he will overcome this bump in the road with his progress just as he’s done many times before and will one day openly communicate through spelling or typing.
It’s taken me practically a lifetime to recognize that it’s okay to speak my truth and not feel bad for allowing myself a moment of envy or self-pity. In fact, I think it’s healthier to acknowledge it and then use it as motivation to continue supporting and encouraging Skyler while also reminding myself just how far he has come.
Parenting autism is a tough road, but I recognize it’s likely not even a fraction of the difficulty Skyler faces being autistic and non-speaking.
So, I will dry my tears and as my bestie and fellow special needs momma, Jess Ronne always says “just keep livin.”