My first post here.
Looking for support from parents of children with SPD and autism or adults with similar condition.
I have a sweet, beautiful 3 year old babygirl and we are currently on the waiting list for an autism evaluation. I know she will be diagnosed. I have suspected SPD since infancy. She is hypersensitive to visual, oral, tactile, and vestibular input and the world often seems overwhelming for her. The only thing that helps calm down her senses is heavy work/proprioceptive input.
Around 15 months, after an illness, I noticed a significant change in her social skills and anxiety levels. She was very social and developing typically before that, all milestones were on time. When she is regulated, she can be happy, social, make eye contact, and interact with us. But when she is overwhelmed, she goes into fight-or-flight mode.
When go outside, she experiences sensory overwhelm and cries or bolts. Crowds, visual clutter, movement and changing visuals can trigger intense distress. She is afraid of swings or any climbing equipment.
She is in sensory overload most of the time where she has multiple meltdowns and is unable to tolerate textures or eat or drink anything, tolerate going out etc. When she is regulated, she can do all these things.
She also has a significant speech delay. She understands simple instructions like "come here" "give me" "pick it up" "get inside" and communicates using limited, repetitive two- or three-word phrases heard from us and she doesn't yet form her own sentences. She loves toys and does pretend play. People are difficult for her but objects are easier. She isn't very social and likes to play alone. She is also very hyper-vigilant, if someone touches her or makes her do something she thinks it's going to hurt her. She is even afraid to put a thermometer to check temperature. She won't let doctors touch or examine her. She won't let anyone check her weight on a weighing scale.
As first-time parents, we didn't know much about SPD or autism until her teachers recommended an OT assessment and an autism evaluation.
I love my little girl more than words can express but it breaks my heart to see her struggle so much in a world that feels too overwhelming for her senses. When she experiences sensory overload, she has multiple meltdowns and severe anxiety and it is heartbreaking to watch her struggle to cope with things that seem so simple for other children. Sometimes, I feel helpless and even guilty about bringing her into a world that is so difficult for her to navigate. She is deeply loved and cared for but when she is dysregulated, she looks like a quiet, traumatized, and neglected child, when in reality, she is a deeply loved little girl who is struggling with so much internally.
Parents or adults who have been through something similar, what helped you or your children? I would love to hear your stories and any advice you can share. I am looking for understanding and a little hope. ❤️