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.