The hours my husband and I spent rocking B to sleep was a testament to our desperation to help our son. Whether it was upside down, swaddled, swinging, rocking, patting, we tried every move, every position and every rhythm. I’ve spent hours crying as I rocked, saying out loud to B “you will do something in this world, you will cure cancer, you will be a leader, you will do something big!” I sacrificed my sanity, my friends, and my own health so that he will be great someday. As I type, my tears flow again because 4 years later I can see his character and compassion for others shining through. His joy in life and his wonder and desire to connect with others is blatant. And connection is what he struggled to do, he never babbled, he never tried out sounds, he was silent or screeching.
B’s speech was delayed, just touching his tongue to the top of his mouth hurt too much. Keeping his body upright and moving forward was all that he can manage. However, he had no problem making his wishes known, his non-verbal and facial expressions spoke volumes. Now that his language is coming on board he has the ability to express all his adventures. His imaginative dreams of pirates, fireman, and trains are fascinating and enlighten those around him to the inner workings of his world. If he isn’t loving on you, he is pulling you into his world, the one that has been locked up inside just now being told. His speech was delayed due to Sensory Processing Disorder (SPD).
Play is communication:
I have built my career on learning the language of children-play. I’m a registered play therapist supervisor(RPT-S) training others around the world in the power of play and how children communicate with play. Play is a child’s first language. Play is truly B’s language, he is a master of it, weaving the stories around you, directing the play as only his mind sees it, and all the while checking on you, ensuring you understand and are fully engaged. You see, play is B’s primary language of expression because verbalization hurts too much. He is not alone because so many children that are non-verbal use play as their form of communicating their world to our world.
With SPD, even his language of play gets disrupted because of his need to be upside down, squeezed behind the couch, under the table, spinning like a top from a trapeze, or being hung upside down from my shoulder. He has to take breaks to get these needs met(regulation), just so he can sit long enough to continue his play. Play allows children to process their world, create meaning, and organize their understanding of it. B is blocked from doing this by his body’s need for regulation. He is blocked from communicating even in his primary language because of the firestorm in mind and body that goes haywire with the stimulation that is SPD.
What professionals don’t know about SPD.
Sensory Processing Disorder is REAL and is a considered a “hidden disability” because there is no specific cause or specific set of symptomatology to have it be in the diagnostic manuals for professionals to learn about. It is “known to exist, mostly because of autism awareness” but because it can’t be clearly identified it is often misdiagnosed or left untreated. SPD lasts a lifetime because it is neurological, their brains are wired differently than neuro-typical (“normal”) brains. Recent scans and studies show different levels of white matter and different regions in the brain light up when scanned then comparable counterparts. Health care professionals in all areas need further and specific training in identifying SPD. It often exists alone not masked by other disorders, however it is the other diagnoses of ASD, ADHD, and ODD that are often identified as the “problem.” These can be comorbid to SPD, and the frequency is high, yet the children lost are the ones where SPD stands alone or is dominant to the other disorders. The problem is treatments for these diagnoses often don’t work for SPD kids instead it leads to increased acting out, familial distress, and low self-esteem. Leaving a desperate family once again lost in the “craziness of SPD.”
How parents and professionals can help.
With Sensory Processing Disorder (SPD) a child’s body doesn’t regulate and get comforted in the same way as other people’s. They need help to calm the firestorm in their bodies caused by the information traffic jam in their brains. Can you imagine trying to have a conversation or learn something new when your body is telling you to be upside down just to calm yourself and focus? I know I would feel crazy trying to meet my needs, let alone communicate these needs in way that the adults around me would understand. It would be like saying “Teacher, I know you want me to read but in order for my brain to function I need to do that upside down and on a beanbag, then I will be able to show you I can read.” If this sounds absurd, try being that kid! Studies show that 1 in 20 children demonstrate SPD symptoms enough to disrupt daily activities. That means there are a lot of children in the world with SPD and the world is failing them because professionals are improperly informed therefore parents are misinformed and told they are "crazy".
And yet like all children, play is their language, play they have mastered, play integrates the brain allowing them to become masters of their world. Play helps them to regulate, calm, focus, and be prepared to function in the world around them to the best of their ability and to what their bodies will allow. Once regulated all children need to communicate and for B and many others this is through play. Adults need to relearn this language of play, to increase understanding and to develop and heal the relationships these children need because SPD is so hard for these family's.
The language of play connects and creates shared understanding which these children desperately need. Parent’s need to know how to heal and repair the relational damage that SPD causes in the family. Treatments from people trained in Play Therapy and Child Parent Relationship Therapy do just that. SPD creates challenging kids, and once they feel connected and heard via the language of play; rewiring and brain integration creates a solid foundation for learning and connection. These kids need all the integrating they can get because life with SPD is so unpredictable and scary.
Play is their language. Play connects. Play heals the family.
Remember, I play for a living, I missed it, I missed connecting to my son… I was misinformed.
Parents and professionals don’t miss the signs of Sensory Processing Disorder visit the Star Institute.
Connect with me. Tell me what you would like to learn more about SPD? Play and SPD? Parenting an SPD kid? Receiving education on SPD & Play Therapy? Parenting & Play?
Comment & Subscribe to the Playful Wisdom blog!