What We Need

     As Mothers, we all try to do what is best for our children. We nurture them, make choices for them, and do what needs to be done for them. Sometimes this path is clear and easy, other times it’s not. With a special needs child, these issues are magnified, and I for one, find the path confusing and cluttered with wrong turns at times. I struggle to find the balance in providing all the things C needs, and frankly, there are things that slide by the wayside. We make choices every day about what we believe is important for him. Sure, we probably make some wrong choices, things that will make a grown-up C say “Why in the world did my parents do that?”

    What bothers me is the interference and advice from judgmental people who are not offering help and support, but rather criticism and condemnation. This goes beyond the well-meaning, forgivable stranger giving unsolicited advice. A friend with an autistic son was at a conference about autism recently, sitting in on a presentation about biomedical interventions. A woman behind her was looking over R’s shoulder while R was taking notes. “You’re not getting what you need, are you?” the woman said conspiratorially. “You should just love your child and stop trying to fix him.”

     I know of no other child, “typical” or not, who is more loved just the way he is than R’s son. My heart ached for her as she told me the story, because this is a Mom who cares for her son in every way. It’s hard enough trying to decide what your child needs without interference from someone who knows nothing about your child or your family. Yet R’s resolve was not at all diminished; she will continue on her path of trying to do what she, as the parent, believes is in the best interest of her child. Just like any mother would do.

     There is much debate over whether or not to “treat” kids with autism in the hopes that they get better. Some believe autism is an irreversible brain condition and we should all accept these children for who they are and not try to change them. There are others who will go to the ends of the earth to try every remedy out there (and there are many), searching for the holy grail that will “fix” their “damaged” child.

     We fall somewhere in between. We adore C just the way he is, and if his issues stayed the way they are we’d continue to feel blessed. We don’t think there’s one thing wrong with who he is. Yet we also firmly believe autism is a medical diagnosis that in some cases can be treated if the proper treatment can be found. C has real medical issues that contribute to his symptoms of autism. We are still working to get to the bottom of some of them, and while we know he will probably never be considered “recovered,” we can absolutely help him feel better. We don’t care if he recovers from autism, but we do care if his tummy hurts, his joints hurt, and if he just doesn’t feel well.

    I understand the position that we need to accept these children for who they are, but does that preclude us trying to make them feel better? Must the ideas that we can love our kids and that we can also help them feel better be mutually exclusive?