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.

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May 01, 2012
by: Anonymous

my son has just turned 6 y/o and has all the same behaviors you have listed. It has been difficult -

i am also at a point where i am wonder. "what we do next?" we have done to OT and we got a trampoline which has made a huge difference. But what else is out there?

I would like to see if there are more of us that can share information and ideas as we discover them.

i'll post my # - not sure how else to start forming a group of us?

anyone interested maybe we can create a group exchanging emails and numbers~

May 01, 2012
re: At a loss
by: Lyn

Hello! I am a mother from the Philippines. I have a son turning two this july. We had him evaluated by devtal pedia and diagnosis is GDD (autism not ruled out). His dad and I are praying everyday for him to be well. We are both working and doing our best to be with him if we are free. You are very lucky to be in Atlanta. In the Phils. it is very expensive when therapies and doctors are consulted. But we are doing our best to come up with money to help our son. You are doing a great job. At the end of the day, we are parents doing our best for our kids.

Good luck!

Apr 30, 2012
by: Krista

Just read your post - my 5 year old son also has SPD. While we've had MANY struggles with him from birth through now - running away has never been an issue. However, i wanted to comment on your truths about what you said re:God and knowing your son is perfect the way Gpd made him to be.
When our son was about 2 I began praying daily that God heal him from his head to his toes - admittedly in very little faith at times. God has answered those prayers - he definitely still has SPD, BUT he's so far beyond where we could've imagined him being (including finishing his kindergarten year w/GREAT success). The prayers have been answered slowly - with little victories over the days, months and even years. Just wanted to encourage you in your faith. God definitely CAN heal your son. I truly believe God used our therapist and even more - all the prayers (from many people) for our son.

Ask God how he wants you to pray for your son...
i am praying with you for your strength in the difficult times and for wisdom to know how to pray and handle the hard situations that I know all too well - can feel constant.
Hang in there and keep looking up!

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