In the past few months I’ve been on a health and wellness journey for my son and I’ve spent lots of time at the Doctor. Recently 3 months ago my youngest son was diagnosed with Sensory Processing Disorder (SPD) also known as Sensory Integration Disorder. I’m still taking the steps to tell family and friends. It’s been a long process to get to this point where I can comfortably talk about it. I believe that’s thanks to prayer, reading, researching, and absorbing anything sensory related. I have become a sponge and soaked up whatever information I could to help my son function in a world that is sometimes to big, busy, bright, and loud. I have spent time in waiting rooms in our family Doctor’s office while I try to convince my son (who’s 3) not to tear apart the place while we sit and wait up to 45 minutes to an hour. I’ve seen a Developmental Pediatrician that grilled my hubby and I with questionnaires regarding our sons birth, development, sensory issues, and our own childhoods. Recently I was referred to an ENT for my sons snoring, waking, and sleeplessness issues. I sat in his waiting room patiently reading, drawing, and coloring, with my son as there wasn’t anything to occupy his sensory toddler mind except me. I always come equipped with my bag of fun as I like to call it because waiting at the Doctor has become a job. I gladly take it on to support and advocate for my child who doesn’t have the voice to get the help he needs. I’ve sat at the waiting room in the X-ray clinic while I have to prepare my son to poked, prodded, and adjusted while explaining to the technicians about his neurological condition. I have stood there in disbelief and frustration while the ENT put my sons X-ray up on the screen and told me that bone is white, grey is air, and black is the tongue without once looking me in the eye. The diagnosis obstructive sleep apnea due to an enlarged tongue. I’ve been told due to this there’s nothing that can be done surgically to help him because his tonsils and adenoids are fine. Even if he stops breathing many times in the night. There’s nothing to be done with his sensory condition. I’ve been asked can he tolerate wearing a CPAP machine, dental device to hold his tongue in place? I honestly don’t know until I try is my response. I’ve held him in my arms and had to shake him awake and wipe away my own tears as I’ve listened to the sweet sound of his breath. I’ve fought, demanded, and pushed to get results from these Doctors who make me hurry up and wait in their waiting rooms. Only to be ridiculed, placated, angered, and frustrated as my son goes into sensory overload for all these appointments. I’ve been told my son is a mystery and requires further testing, and there’s nothing that can be done to help him. And not to forget to mention all the appointments with occupational therapists and speech language pathologists who I have to tell them what will help my son after all my research. I’ve gotten the feeling from the professionals that I’m perceived to be looking for a payout to cash in on an ASD diagnosis. I’ve spent the last 6 months on this journey into SPD land advocating, training, and providing therapy for my sweet boy who at the tender age of 3 has a long list of diagnosis’s that could make your head spin!!! And yet here I am keeping calm and pressing on to advocate for more help and yet more time spent at the doctor.
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