My Response to Ellen Stumbo’s “7 Ways to Help a Special Needs Family”

Ok, I’m going to go out and disagree with another blogger. That is scary in bloggy land, but here I go, because this is an important discussion to have.

There are some things that Ellen Stumbo writes with which I very much agree. I liked what she wrote about her experience choosing to adopt a child with special needs. I wish adoption was seen as more of an option in our society, and I’m glad she wrote that article for National Adoption Month.

This article by Ellen Stumbo, however, about ways to help special needs families, makes me deeply uncomfortable. She starts by asserting that “we are no different than you”, but then goes on manufacture a host of differences under the “special needs” umbrella. She conflates special needs and disability, while making inaccurate generalizations about both. She suggests that special needs families need meals, babysitting, even gift cards.

I admit that I read that article with a feeling of resentment. I’m only one year into this and already pretty tired of having my family generalized and stereotyped by society at large. I don’t want people within our own community to create even more fodder for people to misunderstand what it is like to raise a child with a disability.

The fact is, there is no one picture of what it is like to raise a child with a disability.

We get weekly therapy, LP has hypothyroidism, and that is it. We qualified for more therapy and, gasp, declined it (that is another post). That is the extent of our family’s special needs. I am tired because I have three kids five and under. I struggle to get dinner on the table because cooking with kids is a struggle, period. I need someone to listen to me because all people need that. I have doubts, worries, and angst like any other parent. My house is a mess just like most houses that have young children. If we couldn’t make ends meet financially, I’d be grateful for financial help, but please don’t throw money my way just because my son has Down syndrome. He doesn’t need gift cards because he has 47 chromosomes.

The way I figure it, all those things that Stumbo article listed, well, those are all ways to be nice to any family who is struggling. A family who has a kid in the hospital, extraordinary medical needs, a very time consuming issue requiring a lot of therapy. It could apply to a family who has just experienced a loss, a family who has lost an income, any kind of major illness, or even a big life changing event (like moving across the country maybe). We’ve been that family before, and I’m sure we’ll be that family again, but it that is the ebb and flow of life and human interdependence. I think “7 Ways to Be Nice to Your Fellow Human Beings” would have been a much more appropriate title.

Throwing all special needs families under the same umbrella feels damaging. According to Stumbo, families who have children with disabilities are running around doing hours and hours of therapy, our other children crave attention, and we are stressed to the max. I’m not even sure what the phrase “special needs family” is actually means. Is she saying special to mean extraordinary? I have a child with a disability and I don’t feel like we have any extraordinary needs, and I know families who have children who are not considered disabled but have very extraordinary needs. Disability does not always equate special needs.

I don’t want to sound cruel; I do understand that Stumbo is trying to create compassion for families who really are struggling with those things. When I do need help like that (I say “do”, because needing help like that is an eventuality of life), I will be grateful for an support we get. Still, please don’t assume I’m in some desperate need just because my kid has Down syndrome.

I keep thinking about what happens when someone outside the community reads that article. Is that person going to have visions of neglected siblings, a struggling marriage, financial stress, being unable to maintain a household, and feeling alone? Frankly, I would. Is it no wonder that we are constantly fighting the idea that our children are societal problems?

I understand that for some special needs families, the endless medical appointments, financial stress, and difficult day-to-day are reality. They need understanding and tangible support, absolutely. But look, this is a reality for some families, disability or not. Our Early Intervention service coordinator just had a baby and her older son has been diagnosed with a very rare, very difficult type of cancer. Their life probably looks like what Stumbo paints in her article, but no one has a disability in that family. I, on the other hand, have a child with a disability. I would be completely puzzled and uncomfortable if someone showed up with a gift card or offered to do my laundry just because LP has Down syndrome. Disability plays out in vastly different ways depending on the child, the parents, and the family’s circumstances.

No, let’s say it a slightly different way: Life plays out in vastly different ways depending on the child, the parents, and the family’s circumstances.

Can’t we get away from sweeping generalizations about disability and special needs? Can’t we look at each individual to determine how best to support each other as human beings? Can’t we have compassion for each other just because we are living and breathing on this planet? Can’t we move away from the labels?

Now, if you want to come over with a meal, clean the house, and watch my kids, I won’t turn you away. Who would? No gift cards, though, please. That’s just awkward. Cash is much easier to use. (Yes, I’m being cheeky. Or not. The broom is in the downstairs closet.)