My Letter To The DSM5 2

This letter is for Caleb.  I could have written a novel, and I feel like I left out so much.  I hope my frustrations are clear.


I am a parent of a child with Sensory Processing Disorder.  My middle child, Caleb, is a sensory seeker and has regulation problems.  He is now 5 and receives occupational therapy daily at home and once a week with an occupational therapist.

Caleb has never been able to regulate himself.  He could not get himself to sleep and would wake every 90 minutes to 2 hours during the night until he was 4 years old.  He could not transition from sleep to waking without screaming and crying for an hour.

He starting having behavioral problems when he was about 18 months old.  He would hit, bite, and kick his siblings, and often do the same to me.  He refused to listen to any directions from parents or other adults.  He had no safety awareness and would unlock doors to get outside.  Door alarms and multiple locks could not deter him when he wanted to get out.

He was constantly craving high intensity activities.  He would swing from the ceiling fan, jump off the back of the couch, or jump from the top of the stairs if left alone for more than 15 seconds.  As you can imagine, parenting a child seeking this level of input was not easy.

It was impossible to take him anywhere.  Even going outside to play filled me with anxiety that he would run off and be hit by a car.  Going to the store meant constant tantrums.  We could not allow anyone to watch him, because he needed to be watched every single second or he could be seriously hurt.

By now, our pediatrician was a little more familiar with SPD because of my older son.  I scheduled an appointment with an occupational therapist when Caleb was four years old.  He was diagnosed with SPD.  He is a sensory seeker because his internal "motor" is running too slow.  He craves touch and proprioceptive input. He needs high intensity input that I am unable to provide for him at home.

After starting therapy, Caleb stopped seeking input from unsafe sources.  He has all but stopped his hitting and biting his siblings.  He is now a very sweet, calm little boy and he's a pleasure to be around.  We are now able to enroll him in preschool and allow his grandparents to watch him without worrying that he will get hurt.

Caleb lives in a world where the lights are too bright, every day sounds are deafeningly loud, and smells are overwhelming.  Yet, he craves the sensation of touch and needs high levels of proprioceptive input to feel calm.  Without treatment, I fear he will not be able to perform in a school setting because he will be constantly seeking stimulation.  It will interfere with his ability to learn and he will not be able to participate in the classroom.