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The Very Real Pain

July 11, 2010

Parenting children with developmental delays can hurt a parent’s heart. Sometimes, it can even feel like our hearts are shattering under the weight of comparison between our children and their neurotypical peers.

I don’t agree with a lot of Age of Autism. I think that the editors have a very real agenda and often an extremely warped version of reality. I think that many of the individuals who comment over there are off the deep end. What I do not doubt is that Stagliano loves her daughters. And I know personally how it can hurt a parent’s heart to watch her child be absorbed in toys that are not age appropriate, to be focused on shows, characters, and toys that are all appropriate for preschoolers; it is an odd thing to watch an adult be interested in things suitable for four and five year olds. It hurts because it isn’t supposed to be that way. It hurts, and it’s a pain that deserves to be acknowledged.

Feeling that hurt doesn’t mean the parent doesn’t love, delight in, adore her child for who her child is. Feeling that hurt doesn’t mean the parent is an awful person who rejects her child.

It doesn’t mean that our time parenting is all pain, nor does it mean it’s all about the parent’s feelings, either. But parents have the right to grieve when a child remains at a developmental level that doesn’t match his or her chronological age. It isn’t supposed to be that way, and it’s okay to mourn for the things we had hoped and expected. It’s okay because it isn’t the typical developmental track and to pretend that it is denies reality.

We can and should separate the egregious comments and the outrageous statements, from the very real, very personal emotions that parents feel as they are confronted with a very public expression that their child is developmentally delayed. We have the right to take a moment to absorb that punch to the gut before we table it and refocus on the positives and the hopefully accepting and accommodating network we are working with our children to build for them.

I am sure that many parents of children with disabilities have done similarly to what my husband and I have done: created a support system and an environment for our children that focuses on their strengths, surrounded them with people who love and accept them just as they are and think they are great. This is an important thing to do, and it allows everyone a great deal of joy. However, it also makes it abundantly obvious when they are outside this environment and it is their weaknesses that the spotlight shines on. And it is a kick to the gut, a heart-wrenching pain, and it is not a selfish pain of what I do not have. It is a pain for them, for what they do not have and the very real fact that the wider world is not made for them, not safe for them.

It is also a pain and a deep fear for what will happen when my husband and I are not there. I don’t agree with much of what Stagliano does, but I absolutely understood where she was coming from with her post yesterday. It’s a shame she didn’t leave it alone, as it was, and felt the need to go back and add the bottom paragraph hawking herself and her book. It’s a shame she lessened the strength of the post by going over to a blog that criticized her and set her friends upon the poster (all of whom appeared to be entirely too lazy to read the post itself and the posted by; his name is right there, for God’s sake. Talk about an agenda!). It’s a shame that in her comment at that blog that she pretended that her post was anything more than the fact that our children’s autism can and does cause pain, but that it is very often a pain not for or about ourselves, but about our children, what they do not have, many never have, and may never know they’ve missed and for the way the world will view our children.

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