While he has come so far in many ways, there are still some areas that make it difficult to know what to expect from him on any given day. Today, for example, he had a complete meltdown in the car because of a leaf that was stuck on the window. A leaf. How do explain that to someone? How do you tell a person that you had no choice but to leave the car and remove the leaf to stop your child from crying and shaking and flapping his hands? In some ways, you don't. In many ways, you can't.
I came across a post from this time last year, and I am reprinting it tonight. Fiver has profoundly changed in a year, and some of the problems listed below have been resolved. He has overcome some hurdles that, on tough days, we thought might be insurmountable. In other areas, he has changed very little, but one thing always remains the same: the way I feel about him. Nothing can change that.
I love my children. I love each one of them more than I love my own life. They shine like new pennies, full of promise, brimming with potential. My daughters are spirited and wild, maddening and hilarious. I have the same worries for them that every mother has for a child; worries for their safety, their health, their happiness. They are so strong-willed, so easily confident, that I imagine, were we deities in ancient Greece, they would have been the ones to spring fully formed from my mind. They were born ready for life.
The Boy [Fiver], I imagine, would have sprung fully formed from my heart. It's not that I love him more, I just understand him less. In a way, my heart has to shelter him from my mind, because my mind can't wrap itself around him. How do you deal with something that takes your child into his own world, and then drops him unexpectedly into the middle of the real world, unequipped to handle what he encounters? You can only love him, to make up for the lack of understanding.
Many people have asked me to explain SPD. They have asked me with questioning eyes, and with sympathetic smiles. They have asked me with pointed stares and head wags. They have asked me with love, with curiosity, with judgment. I still don't have a succinct answer; I don't know if succinct is even possible with SPD.
Here's the thing: SPD encompasses so many behaviors, that I am not entirely unsympathetic to those who seem skeptical while listening to a truncated definition. It sounds like a catch-all, a cop-out, and if I didn't deal with it everyday, I would be thinking the same thing. Some kids with SPD are sensory-seeking because they are hypo-sensitive. For them, the brain does not receive the message from sensory input that enough is enough. These are kids who may literally bounce themselves off of the wall in order to "feel" anything. Then there are the SPD kids who are so hyper-sensitive that they retreat and recoil from every sensory experience. They only wear one brand of socks; they eat all their food cold because even lukewarm feels hot to them; they run inside at the sound of a distant helicopter. Their senses are on overdrive, and they cannot recover when they are bombarded by life. I know I've talked about all of this before, but this is my life.
The Boy is a typical case for SPD, meaning that he is hypo-sensitive for some things and hyper-sensitive for others. He has fine motor delays and some gross motor delays. He has bilateral coordination delays, sequencing problems, some expressive language delays, and some receptive language delays. Certain noises or motions will cause a complete meltdown, from which he may never fully recover. If that happens at 9 am, well, good luck for the rest of the day. Unless you are a familiar fixture around our home, The Boy probably won't look at you when he talks to you, if he answers your questions at all. He has finally started using his classmates names - he has been in school with them since last September.
Each day with The Boy is like a blank slate, only the slate is all cracked, but you are still expected write on it as if it were whole. Mornings find him in bed next to me, after having come in sometime in the night, sucking his fingers and rubbing the shoulder of my nightgown between two fingers. He eats a waffle every morning, after all of "the parts" have been removed. "The parts" consist of the entire outer edge of the waffle that gets a little too crunchy in the toaster, and therefore must be removed so as to render it edible. He has to ask what he is drinking every morning because he is so hyposensitive in smell and taste that he can't tell on his own. He knows the difference between milk and juice by texture, not taste, and if you ask him what something smells like, he will tell you whatever color it happens to be. (That smells like purple!)
I could go on ad infinitum, but to what purpose? There is no way that I can ever predict what the day will hold by simply enumerating the many ways in which The Boy may react to the world. I've tried. If he is comfortable with a shirt one day, he may refuse it the next time because of a string that has come loose in the washer. But there are some things I can always count on: he won't try to sit on a bike; he will cry when you rinse his hair; he does like to have deep pressure in the form of a big hug or gentle, but firm arm squeezes; he'll always have room for a treat. He will always retreat into himself when he becomes overwhelmed - this is most typically when he stims. He calms himself by watching spinning wheels, flashing lights, pressing the same button on a toy a hundred times in a row, humming, running around in a circle. He's not hurting himself or anyone else, he is coping with a world that is not comfortable for him.
Where does this leave us? It leaves us on the path of every parent and child, trying to navigate a world that is not always an ideal place, but one that holds myriad wonders. It's leaves us grateful to live in a state that offers great intervention for SPD, with an occupational therapist and speech therapist who adore him. It leaves us happy that he is whole in body; smart, funny, and unbelievably endearing.
SPD takes a toll, there is no denying that. A toll of exhaustion, frustration, sorrow, and anger. But for all that it takes, it leaves behind a boy that I love beyond my wildest dreams. A boy who works harder than anyone for things that should be as natural as breathing. A boy who can't hold a pencil, but can memorize a song after hearing it one time. A boy who must have sprung fully formed from my heart, because my mind is too small for the job.
Originally posted 4/26/07