If you asked me about my son 2, 3, or even 5 year’s ago, and if I thought he would catch up, I would have said YES! Without hesitation. When my son Talan was younger it was easier to blend in and hide his differences and fake it. It was easier to live in a bubble filled with endless therapies and interventions that filled me up with hope that one day he would get better, or grow out of it, or catch up to his peers. It was easier to think things would be so different for him as he got older. I truly believed it would change as he got older. It didn’t.
Talan is 11 year’s old now and at his last wellness visit with his Pediatrician we went over his struggles and how to help him. I honestly thought the discussion was never going to end and after a while, I felt like all I could hear was background noise and not one word of our conversation. I heard things like “significant developmental delays” “intellectual disabilities” and the one that hurts the most… “life long”. When she said those words and told me to be prepared for Talan to live at home well into adulthood, I just cried. For both him and me.
I cried the entire way home thinking of FOREVER. What does that even look like? What about the life I envisioned for him when I was pregnant? What about the stress of all of this? How do I manage it all? And then the grief struck, and it struck me HARD. Grief by definition is a mental or emotional suffering or distress caused by a loss. I felt all of those so deeply: suffering, distress, loss. I felt like someone had sucked the wind out of my sails.
I remember calling a close friend of mine in Pittsburgh and she said something to me that no one has ever said to me before: “don’t hide your pain”. My immediate thought was that I had to hide my pain because I need to be strong for Talan. He needs his mom to be on top of things and ready for this journey. I have to hide my pain. Until I couldn’t anymore.
I would be lying to you if I told you I wasn’t struggling with my son’s Autism lately. BIG TIME. Each day, I wake up and my day starts at 1000 miles an hour. Between keeping up with my son’s high energy and behaviors all day long, I am left feeling emotionally drained. I can’t help but think this is like Groundhog Day. The cycle is repeated over and over. Sure we have fun together and there are really awesome and beautiful days, but there are some really not fun days that seem to never end. My patience is so thin lately and I struggle with this for myself because I am usually so patient. Truth be told, I have been feeling frustrated by some of the behaviors and the repetitive phrases my son says all day long. I am frustrated by the humming, the obsessing over toys, paper, tape, paperclips, boxes filled with junk, the constant whining, the pulling, and having things put in my face all day. The constant need of attention. It is all starting to feel heavier than ever and most days I just cry because I don’t know what else to do.
The pain that I feel as his mother and not being able to help him or “fix him”. The pain of watching kids his age go to school and learn and go on to the next grade, the next phase. The pain of letting go of that bubble where I thought my son would grow out of it and get better. The pain of letting go of those plans I had envisioned for him- high school, sleep overs, pizza parties, so many friends, college prep and acceptance letters, careers, marriage, babies…..all of it. As he is getting older, I can feel all of these things slipping away and the pain I feel is unbearable at times.
I am hoping that this pain I feel will one day bring growth. I hope by sharing my pain, it can help just one person feel like they aren’t alone and that they can let it out.
I hope by sharing my pain, one person will stop hiding theirs.