Thursday, April 26, 2007

A Day in the Life

Since April is Autism Awareness month, and Sensory Processing Disorder falls on the autism spectrum (you can have SPD and not be autistic, but many children who are diagnosed as autistic have SPD), I've been mulling over what to say about my experiences with SPD. The truth of the matter is that my experiences sometimes leave me so exhausted that there is no way I can accurately describe a day once it has drawn to a close. Then Carmen beat me to the punch, and got me thinking again about what to say about my Boy.

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, 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.


  1. The love of a mother for her son cannot be rivaled. The love of YOU for a son as special as yours cannot be properly described in words....but you sure did a wonderful job say the tears in my eyes!

  2. Anonymous7:16 PM

    Aimee, when I read this it reminded me of something you wrote for the lit. mag. in college with a part about holding your precious little blue bundle. I thought then, and I know now- you are a wonderful mom and your son is a treasure.
    You are always in our prayers.
    Mirabella Mom

  3. Thank you for bringing more understanding to SPD. Your son is lucky to have you as a mom and it sounds like you are lucky to have him as a son :)
    Thanks too for the info about Parade Magazine. We do get the Sunday paper so I will look for it. I am aware of the study and it was one of my questions for the Dr. during the Revolution Health interview, but we never got to it. I am hopeful for the study but I am also confused by it. If they tell us that avoidance is the only way to outgrow the allergy, then how can exposing the child to small amounts of the protein help to sensitize the child to the allergy? I know there is an answer out there, I just don't know what it is. The study is interesting and seems promising at this point. Thanks again!!

  4. Aimee - that is SO deep. A wonderful and touching post. If I had a thinking blogger award, this would be my nomination. I can't imagine what it's like but I know that God has you firmly in His hands.

  5. Anonymous11:42 PM

    I know I've said this before, but oh how applicable now. Now that Autism Awareness Month is almost over. I understand The Boy. I know what it feels like. And I'm sort of glad that you and Rob and all of us have the chance to know The Boy and know how he is, because I feel it helps you all to know and understand me just a little better.

    I'm the person that you described as hypo-sensitive to touch. I love bear hugs! The harder the better...why? Not because it means I love you that much more but because my body doesn't get the signal from my brain that maybe I'm crushing somebody's rib cage. But I also don't understand how to stop myself...because I cannot feel. It sucks sometimes and it makes for difficult relationships with people...especially family. I can't tell you how many times I heard "You're like a bull in a china shop!" or "You need to learn self-control!" It's not so much that I can't control myself, it's that I don't know that I'm not, and I may crash around a bit because I can't tell what kind of physical presence I have in any given place. So yes, I understand The Boy. But being an adult now, and looking at the Boy, I also understand a little better how difficult it must have been to be my sister when we were growing up. And so kudos to you, for dealing with SPD you're whole life and never truly realizing it until now.

    I love you - Julia

  6. Your Boy is just a beautiful person. and his SPD is part of the beautiful boy he is.

    I know a family whose youngest has Downs Syndrome. The mom told me that he is her joy and she said, "All it took was an extra chromosome to get such a wonderful child." All it took was SPD to get such a wonderful child. God bless ya's.


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