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.

My Letter To The DSM5

This is a comment directed to the APA for inclusion of SPD into the DSM5.

I am a parent of two children with Sensory Processing Disorder.  My oldest, David, now 9, has had feeding issues since birth.  He was unable to breastfeed and had difficulty with a bottle.  He struggled with weight gain, was considered failure to thrive,  and was delayed on all milestones.  We were referred to neurologists, hematologists, and other pediatricians for second (and third) opinions.  No one could give us an answer to our son's quirky behaviors, why he couldn't eat properly, or why he was delayed in gross and fine motor skills.  

After four years of blood tests and constant doctor visits, a friend of a friend told me about Sensory Processing Disorder (SPD).  Our pediatrician wasn't knowledgeable in SPD, so I took it upon myself to secure an evaluation with an occupational therapist.  David was diagnosed with sensory modulation problems, low muscle tone, poor coordination, tactile defensiveness, and motor planning problems.  The poor child's vestibular and proprioceptive senses were completely "out of whack" causing him to avoid any physical activity.  He was unable to tell his body how to move, so he was unable to roll over, sit, crawl, or walk on time.  Worse, he wasn't able to perform the motor planning to chew or swallow most foods.  His low muscle tone meant that he was in physical pain just from the act of chewing.  

By the time we found this out he was nearly five years old.  Due to a wait list for speech therapy, he wasn't able to receive services until he was eight years old.  By then, it was too late.  He is nine years old and can only eat soft foods that are easy to chew and swallow.  His health is suffering because of his poor food intake.  

I strongly feel that if his pediatrician had known about SPD when he was a baby that he could have received help sooner.  Earlier intervention would have allowed him to learn how to chew and swallow.  Luckily, we have avoided a feeding tube, but his eating habits are not anywhere close to normal.  It is a struggle that we face at meal times and throughout the day as he is always hungry, but unable to eat properly.