I rock & hold my 3.5 year old for 2 hours every day because he’ll only sleep with vestibular input & pressure!
I plan activities away from our kitchen every time I cook something for dinner that creates a popping sound because it’s an auditory trigger for him.
I schedule all of our activities, visitors and appointments around a 2 days on 1 day off rotation to make sure he has plenty of unstructured and decompressing time.
I carry big bulky headphones around everywhere we go to block out the mower, humming of a fridge, talking or what ever sensory sound might throw him into fight or flight mode.
I schedule all of my phone calls when I can be pushing him on a swing because that motion seems to allow me about an extra 90 seconds of talk time before the talking has overwhelmed him.
I haven’t slept for more then a 3 hour window in 3.5 years. I haven’t had more then a 2 hour window alone with my husband in 2 years. I haven’t made a single business decision, household decision or scheduling decision without thinking through sensory processing and whether it’s feasible right now.
This process has been really challenging. Knowing that people experience everyday things like talking during dinner, cooking meals or unloading the dishwasher without having to think through a plan to achieve it can be discouraging.
But…I believe, my list of what I see and experience is VAST & so much greater because so many of these things have taken effort to get there!
I still get to hold my baby for nap time everyday. And look at this sweet face as he sleeps. I know this wont last forever!
I get to have my son home for another year because we knew we had to get some answers and work on more coping mechanisms before we put him into a classroom setting. I’m so glad we get this year together for him to learn and for me to have good moments!! After a year of bad days, I feel so blessed that I get this time with him to experience good days as we work out a schedule & system that supports him!
I get to watch him slowly take off his headphones and use the techniques I’ve taught him to not only experience the sound around him, but also learn to cope! While so many of us go through life not even noticing the hum of a refrigerator, I get to watch my son acknowledge the sound, use a tool to cope with the sound and then watch his wheels turn as he learns everything about the sound because it’s no longer a trigger creating fight or flight.
I listened to him sing a line, “God only knows” from a For King & Country song today after we did all the prep work to turn on music! He not only listened to the music instead of spinning (which is an overstimulation release for him) but he sang those words!! My little guy who never babbled, never repeated sounds and has never sang any type of nursery rhyme songs with me sang the 3 sweetest words today!!
If you’re a mom with a little one like me, make a list of those breakthrough moments and share it with someone who will understand! I am so lucky to have found a friend who understands and celebrates the MIGHTY wins with me! And let yourself feel all of the joy in the little things! You better believe I had tears of joy stream down my face when I heard that little voice sing “God only knows” today! A lot of work went into turning that music on, I sat in my joyous moment and added it to my list! My VAST list of moments and experiences I get to have because of the challenges!