At a loss & yearning support

by Christen
(Atlanta, GA)

My 5 year old son was diagnosed with SPD when he was 3.5. He was attending a private pre-school and the teacher, who had experience with SPD, recommended we have him observed by an OT during our Fall Parent Conference. I was devastated. I wasn't familiar with SPD but hearing that my baby was facing any kind of neurological challenge broke my heart. At 3 years old the signs that tipped the teacher off included walking on his toes, falling down on the playground, spinning constantly, wearing his hoodie often. We thought all things were normal for a 3 year old. He was our first born and we had no point of reference for what "normal" looked like.

We started working with an OT weekly and for the last year and a half he's made huge progress. He is gifted intellectually, extremely bright, can think logically and articulate beyond his peers. He has a high need for responsibility so assumes the leadership position in most situations. We've dialed in a sensory diet that includes trampolines, spinning chairs, walking on his hands, tight squeezes and the like. It seems he manages his need for stimulation and/or input much better than he did a year ago.

Now we've crossed over into the more emotional challenges of SPD. He lives daily extremely fragile. We never know when the meltdowns will come or what will trigger the explosion. One minute if someone takes something away he'll shrug it off and play with something else the next he's pushing, throwing things, crying, claiming that he has no friends, no-one likes him, we his family don't love him and he's a bad child. As parents we live constantly trying to protect, shield, prevent. A year ago during a shopping trip to buy PJs for him and his sister, while we were checking out we realized he'd run away. We both thought the other parent had him but suddenly in the blink of an eye he'd left the store, bolted out of the store and had run at least a half a mile away in an outdoor shopping center. It was terrifying. We'd called the police, had security searching for him for over a half an hour. Someone found him sitting on a bench on the complete opposite side of the center. He knows the difference between right and wrong and understands boundaries but there are times I believe he can't help himself. He ran away again today and once the drama had subsided and we were all home he crawled in my arms and said he was so sorry and he didn't mean to run away.

We struggle with knowing when his actions are SPD driven or behavioral. When hitting, melting down, refusing to sit in his chair or take a bath or go to bed, refusing to listen, pouting, running away - how much grace do we give and are we dialing in acceptance for his behavior. We are strong Christians and we believe with all our heart that God never makes mistakes. We know our son is perfect and wonderfully made and we know God chose us to be his parents. We pray often for him that Jesus will intercede and help him cope, help him improve if that's even possible, increase our patience. Yet daily we struggle - feeling inadequate.

We're at a place now wondering if just continuing our weekly OT visits is enough. When do we dial in something else? Social play groups, listening therapy or even child psychiatry? What is the next level of therapy at this stage? And my other question is are there support groups for parents struggling with knowing how to raise a child with SPD? We live in Atlanta, GA and I would love to connect with other parents living our same journey. Thank you for your thoughts.

Kindly & Prayerfully.