The Short Bus Diaries » Confessions About Life With an Autistic Son

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Love is Complicated

A friend once asked me – and she was asking this as a long-time friend who knew that I trusted her, and with whom I shared a 100% honesty rule – if I loved my son less than my daughter because he is autistic. I considered the question seriously. After all, this was a friend who worked with special needs children and their families, who understood me deeply, and a person that I knew would continue to like me, even if I offered up a brutally honest, unfair answer.

I told her “no”. I loved my children in equal amounts.

However, the form my love takes feels different for each child.

(Now let’s subtract the default love from the descriptions that follow. Although this is unfortunately not the case for all parents, I do have that automatic, “I-gave-birth-to-these-children-they-are-a-part-of-me-and-they-are-beautiful-little-human-creatures kind of love. I mean, really. They’re my children. But let’s just call that an argumentative assumption and move right along.)

My love for my daughter is easy. She is an extremely intelligent, personable, chatty child who regularly squeezes me tightly and kisses me on the lips and tells me that I am a “great mommy”. She plays with toys, entertains herself a lot of the time, and can be trusted not to take a muffin out of some guy’s hand at the coffee shop. Who wouldn’t love a child like that? It’s so easy.

My son is extremely affectionate, easy on the eyes, and clearly loves us the way we hope our children will love us, when we are pregnant and wondering what our children will be like. Who couldn’t love a boy like that? However, he is very difficult to manage, consistently oblivious to “the rules”, and unbelievably (and you need to come to our home to observe this to actually understand just how much our lives are dictated by this) driven by his urges and fixated on doing whatever it is that he wants [NEEDS] to do.  Thus, to love him is to love despite his life-disrupting behaviors. On the other hand, he is so eager to please, tries so very, very hard to utter the words that we practically pull from his mouth, and is so sweetly dispositioned despite the endless demands we and his many therapists place on him. It is impossible not to love a boy like this.

autistic son, love

Consequently, my love for my son is less easy and more “fierce”, which is the word that came to mind when I was first considering my friend’s question. My love for him pours out of me in very physical ways, partly because he loves the tight hugs, and partly because my love is jumbled up with this endless need to protect him and to battle on his behalf. And the battles include both the one we are in with the public school system (more on that another time) and the battles against his urges and out-of-control sensory needs that get in the way of his education, his ability to sit still for dinner, his bathroom needs, his ability to not run from us in public places, and on and on.  Just typing these words makes me want to go find him and squeeze him tightly. In fact, I always experience this duel need to shield and to fight, when I think about my son.

Yup. Fierce.

The other component to all of this is how my feelings toward my son shift throughout the day.

In the morning, when he is sweet, soft and slow-moving, I want to hold him, swing him, and be with him.  Those feelings emerge sometimes later on during the day, when I see him making a connection with me, a toy, his sister, the use of a word. I feel proud of him and want him to feel (physically, so that my intentions are as transparent as possible to him) my pride as I squeeze and kiss him.

But on those days where no therapist or school bus comes to relieve me (or my husband), when he simply does not know how to entertain himself, aside from eating, swinging, or jumping, and he literally follows me from room-to-room, pulling on my clothing, pushing my body towards whatever it is that he wants, when I simply cannot tell him for a fifth time in a row that he has eaten enough snacks and cannot eat anything else for a little while…when I cannot sit down for more than half a minute before he is yanking my hand away from my food, my phone, a pen, my lap…climbing on my neck, repeating sounds that make no sense to me…  I want nothing more than to be so very, very separate from him. I cannot wait for someone to pull him off of me and occupy him for an hour so that I can have my own body and mind back.

And then, at 6pm, when he is running back and forth through our row house, giggling madly and leaving none of us alone in our chosen activities (pulling on my daughter’s toys, opening up the refrigerator that I left unlocked for one minute while I poured some milk, pulling my hands away from my phone as I type an important message, dropping food all over the house, screaming, screaming, SCREAMING)…I cannot wait to give him that sippy cup full of medicated milk that pulls him down gently into a deep sleep until 5:30am.

But then, while the medication is taking effect, and he is curling up next to me on the couch, making his back and arms available for soft tickles, I want to be so physically close to him once again. And after the bedtime routine is complete, and we cuddle up together in bed. I drape my arm heavily onto his back and hold his hand to let him know that I am there, that I am ultimately his…that he is protected and loved, despite how crazed and anxious I may have felt only two hours earlier.

Later, I cannot resist checking on him several times before I myself go to bed. I rearrange his blankets, stroke his hair, kiss his warm cheeks, and call him my “Baby Boy”.

The day ends and the cycle begins again.

Niksmom - January 23, 2013 - 3:38 pm

This was just lovely. Beautiful.

I’m not sure how you did it, but you just perfectly summed up my feelings for my own son. The ferocity of all of it. Every minute, every up, every down…SO.INTENSE.

And I wouldn’t trade it for the world if it meant not having my boy with me.

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