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"...we sure do love our kids." -Kristina Chew
My son is a gorgeous boy with a infectious laugh. He surprises us daily with new quirks and phrasings, abilities and understandings. He has as many nicknames as you'd expect in a child whose parents adore him: Leelo, Mr. Happiness, Mr. Excitement, Squish. He gets told how much he is loved, frequently:
"Who loves Leo?"
"Me!" (pronoun reversal is common in people with autism)
"Naaaaw! Who loves Leo?"
"...You?"
"Yes! Mommy loves Leo!"
And it's true. I love him, with a bone-crushing fierceness that is all the more intense because my mama bear alter ego rarely gets to hibernate. There are many days in which I spend as much time advocating, accommodating, and mediating for Leo as I do actively parenting him.
This is because children like my son, children with autism or other special needs, need a lot more than love. They need services: detailed diagnoses, specific supports, targeted therapies. None of these happen without a parent or other advocate fighting, and fighting hard.
An even grittier love is required once those services are secured, because Leo and his friends don't always like the therapies they need. While it might seem easier to let them stay home, to kiss their tears away and help them back to the car, most parents' bottomless love just doesn't give them the ability to properly support the special needs of their children. This is best summed up by Anne Sullivan, as portrayed in The Miracle Worker:
Mrs. Keller, I don't think Helen's worst handicap is deafness or blindness.
I think it's your love ... and pity.
All of you are so sorry for her, you've kept her like a pet.
Why, even a dog you housebreak.
The Miracle Worker should be seen by anyone who interacts with children with communication or behavioral challenges, because Anne Sullivan's battle cry is still relevant today: if we want our kids to learn, there can be no inaction, no laissez-faire, no affectionate wait-and-see. If we do what she asks and love our children intelligently, then we agitate for the support, therapy, consistency, and/or routines they need; we follow through; and we renew the fight when cutbacks or faceless insurance companies threaten to take our kids' services away.
Leo receives a lot of services. His autism means he needs a special day class, a behavioral program (coordinated between home and school), speech therapy, and occupational therapy. There are no classes in our school district that can handle his behavioral needs, so the district pays for him to take a bus to a segregated special ed school twenty miles from our house. I hate sending him so far away, but I know that his school, behavioral program supervisor, teacher, and aides know him well, have created a wonderful routine and learning environment for him. I love him, so off he goes.
I love him, so I do our best to make his home environment as ideal as possible, and accommodate him as much as we can so he can learn to accommodate us, too. If we don't learn the best ways to live together, our family life will remain loving, but bittersweetly challenging. He won't be as happy as he could possibly be. I love him, so I want him to be as happy as he can possibly be.
I love my son, so I care what he will think if he is able to read this or all the other things I've written about him. Will he understand that, underneath all my ruminating and processing and soul-searching and advocating and complaining is this deep, deep love?
I hope so. But because people with autism often have difficulties with inferences, I'm just going to state it outright:
Leo, I love you.
Because I love you, I will continue to tell your story to the people who need to hear it, and fight like hell on your behalf.
P.S. Isn't it time you other moms wrote your own declaration of fierce mama bear love? Send me your link and I'll post it here.
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More on love, pity, and taking action:
Vicki Forman: For my son, on his birthday: Seven Reasons Why I Love Him.
Dora Raymaker: End the Perpetuation of Pity
Gwendomama: This Is My Early Intervention
