So our story begins with my son being born at 27 weeks (3 months premature). He was very sick in the hospital until 5 months after being born. I ended up with HELLP syndrome and pre-eclampsia which caused me to go into pre-term labor with half my organs failing.

My son had a MRI right before being sent home as this is standard now for preemies. The radiologist said that he almost didn't mention something he found on the report and due to the research being too new. They found diffuse excessive high signal intensity (DEHSI) only at 5% but still significant enough. Early research showed that by age 5 these children exhibited ADHD/SPD like symptoms that can greatly affect their schooling and behavior. The pediatric neurologist said it was something to watch out for and be prepared around school age.

We started ECI (Early Childhood Intervention) as soon as he came home with me from the hospital. I breastfed exclusively (that was extremely difficult but very worth it). We figured get him as much help as we could and maybe we could hedge off any learning/physical disabilities associated with being preterm. We used OT/PT/Speech extensively for 4 years through ECI. My son didn't qualify as disabled enough to continue with the school so we were on our own and started to notice more and more troubling behavior. Overall, considering his early birth we had very few issues however, he didn't start walking until 18 months (no crawling previously either) and had some delayed speech (by about 6 months of normal).

Around age 2 we noticed some violent tendencies as my son would bit, hit, head butt, kick frequently. At first we thought it was due to his speech being delayed. However, we had him tested with an audiologist and ENT. His ears were clear and his brain was receiving signals for speech. After he had more of a vocabulary he would scream at random times, make odd noises, yell, shriek when he should talk normally etc. Impulsive behavior became the norm, always seeking thrills (to be chased etc). He would intentionally get in trouble just so you'd have to react in a HUGE way. He craved chaos. He was constantly coming home with "write ups" from daycare.

Fast forward to current day (he's now 6 1/2 yrs old) We're in Kinder, we've done all the assessments at school (School Psychologist, Counselor, Teacher's ARD meeting, Spec Ed teachers and Diagnostician). He's had 2 ISS and at least 2 during the day detentions. It had become so bad that earlier this year we reached out to our top of the line children's hospital and research medical school where they have a behavioral therapy clinic. They monitored/assessed him and due to our serious concerns enrolled us immediately for family behavioral management. (I'll get into that deeper later). We still struggle daily however, we have home life mostly under control. One of our biggest struggles is educating his teachers and daycare the techniques that work for him to keep him calm and in a relaxed state where he's not causing chaos.

All in all I feel for all of you who are close to tears. This is exhausting and when the DRM doesn't officially recognize SPD the school will not take it seriously. Also, due to this it is extremely difficult to get the care and special needs my son needs w/out agreeing to saying he has ADHD. The meds for ADHD do NOT work on most SPD children and can often make their symptoms worse.

Don't lose hope, you have to be your child's biggest advocate and don't back down! I'll share what I've learned and know so far and try to help those who are struggling and not able to find any kind of comfort.

Zel

thank you for posting this. Just hearing a story like yours is so helpful. I'm noting that a friend who is an OT recently took at job at the school district level, I suppose for the stability and benefits. Another OT provider in my area just shut down their facility and does only self-pay home counseling and contracting to the district, and the district is buying a lot less OT this year than last year. I know it sounds paranoid, but I'm really wondering if lack of inclusion in the DSM-V and negative comments from the APA hurt the entire field. Don't get me wrong: I'm not one of those who believe that SPD is made up; it's certainly not from what I've seen. But if feels like a chronic condition that just isn't recognized as such.

My mom happens to be an OT so thankfully I have her insights as well and guidance. For a while OTs were being phased out of many clinics/hospitals and schools in favor of "full stack" PTs. PTs do not learn to the level OTs do for self care, chronic issues etc. She's noticed a resurgence for OTs and new students so that's a positive. Until Doctors find out the underlying causes of SPD (be it previous white matter damage etc) vs ADHD and its causes there won't be any progress on this front.