My Response to Ellen Stumbo’s “7 Ways to Help a Special Needs Family”
Posted: November 15, 2013 Filed under: advocacy, disability, Down syndrome, parenting | Tags: disability, Ellen Stumbo, Parenting, Special Needs 28 CommentsOk, 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.)
Kimchi Latkes 
And you don’t want me to come over and try to clean your house because, well, I’m pretty sure for me it’s clean enough already. Yup. Looks good to me!
;)
Haha! I dunno. We’ve got eight chicks in our upstairs bathroom. It is pretty crazy!
THIS! Hey, you and I DO agree on some things ;-) (Or do I not have the right to comment on this since none of my kids have “special needs”?) (Although, as you point out, many “typical” children have “extraordinary needs” at some point or another — which every single one of mine did.)
Haha. I think we agree on a fair amount of stuff but disagree on some very fundamental ideas. We’re all people though trying our best right?
I can’t tell if you’re being sarcastic about the right to comment… I think everyone has a right to comment on the world around them when done with respect and you’ve always been that to me. Anyways. We agree to agree. Let’s bask in the moment. :)
I was not sarcastic. Sometimes I am not sure how I come across talking about these issues without first-hand experience as a SN mom. How much does my experience parenting 5 kids ages 3-19 make up for that? I dunno. If we do end up adopting, I’ll know for sure that I was full of it or not. Until/unless that point, I do feel awkward making broad statements about parenting SN kids.
I think it is good that you feel awkward about it, not that I want you to feel awkward but that it shows you’re thinking about it. Even if you adopt, I suspect that it’ll have its own uniqueness. And goodness knows, as shown by this post, I disagree with plenty of people who have a child with T21, so it isn’t like there is an “in” and “out” perspective. I think everyone has something to bring to the table as long as we are careful about speaking for ourselves and not others. I try very hard not to be a special needs/disability spokesperson. I’m a parent, I’ll never know what it is like to have T21, I’m a year into it, and I can only speak my truth. Maybe I fail sometimes too, but that’s what I aim for. What do any of us really “know” anyways?
Agreed, 100%.
I’m shocked! ;)
Honest. Brave. Absolutely agree with you regarding the “labels” we should stop putting on people!
Thank you! :)
Ya, can’t say I was a fan of this article either. It screamed “Pity Me!”. I don’t need people thinking I am worn out, exhausted and frazzled because my son has Ds. The last thing I want is for people to think raising Russell is just soooo hard, or soooo stressful, that I need all these handouts and breaks from my life.
And everything in the article just kind of contradicted itself. To start it with “We are no different than you” and then go on to list all the things we need because we are, “so different than you”, just didn’t make sense. The only point I liked was #5. Sometimes we just need some one to talk to, someone to listen without pity or sympathy. But see, that point didn’t even fit in with the rest of the article because everything else IS about “Pity and Sympathy” and what others can do for us.
Every family, special needs kids or not, needs extra support from time to time. This shouldn’t have been about “special needs parents”. It’s not an article I would want my friends and family to read because it isn’t how I would want them to view my life.
Or maybe this article is great and I just have shitty friends who don’t want to clean my house or bring me gift cards! lol
Agree on point #5. But then again, that still seemed like just a generally good thing to do for everyone in our lives.
I’m starting to think that my friends are messed up as well. Where are the meals and gift cards???
This is great. 14 1/2 years later, my middle son with Ds is still my easiest kid. Did we accept a few meals when he had heart surgery? Twice? You bet we did. But like you said, it’s about being good to your fellow human beings; not pitying them because they are “special”.
Exactly.
I love the idea of all of us just sort of looking out for each other; let’s just offer support and help no matter how many chromosomes our kids have! Let’s just be aware of who needs a meal, a shoulder, a babysitter, a laugh or a gift card.
Well done, as usual.
Thank you! I don’t want to come off as a big curmudgeon, I just hate the idea of someone thinking that my son creates some kind of awful stressful life that I need to be rescued from. I suppose the moral of this story is just as you say, that we should be kinder to each other no matter what.
Perfect thought, momshieb.
Well said!
Thank you, mama. xo
Yes. All of this. I think a lot about what I “thought” my life might look like when I found out my son has DS. I thought it would be all the hardships describe in the 7 Things article, and really it’s not. Not at all. I think our Early Intervention teacher has really added to our village, she is by no means a burden. What I wouldn’t have given to have some guidance, and the assuring, “yes—that’s normal” assurance when my older son was a baby.
I look around me all the time, and when I look at my family compared to other, I see sameness really. My haul to getting to therapy is someone else’s dance lessons. It’s stressful, but we do it because we want the best for our babes. My worry about education for my son, is likely the same as another mother who has been given a “highly gifted” label. We both hope our kid is learning to the best of their potential, and is finding friends, and is being treated well by the teacher.
And as for gift cards…if you gave one to me, let’s say to Amazon, I’d totally blow that on something for myself and never tell. If we’re being honest and all. -jenn.
“My haul to getting to therapy is someone else’s dance lessons. It’s stressful, but we do it because we want what is best for our babies.”
This really struck me. I can’t tell you how many families I know who schedule multiple extracurricular activities for their children, yet, for typical kids, that is simply called “good parenting”.
I’m assuming that the profile is your husband’s? I’m really enjoying the blog!
Yes! Didn’t realize that when I read someone else’s blog on here it defaulted to his profile. I’m enjoying yours too!
Thank you for this response. – I am in complete agreement. I think it is a wonderful thing to help a family out if they are going through a tough time & I realize that everyone’s individual experience is different but if someone showed up at my door with a meal because my dd has T21 – wow! would that ever be an awkward moment! We live such an ordinary life – I might need a night out because my tween is driving me nuts, maybe someone to come clean my house because one of my teens has such a busy sports schedule or perhaps even a gift card because my other teen “needs’ to go out with the boyfriend too often or because I worry about her safety as a newly licenced driver but because my youngest has T21? Nope…………I’m just not understanding that.
thanks for writing this :)
Laura
downsyndromeupupupandaway.blogspot.com
Exactly! (I must admit I chuckled when reading about your teen who “needs” to go out so often. ;) )
Strains of Janis Joplin’s “Get It While You Can” go through my head when I read Strumbo’s article (and then I feel guilty for wanting to take advantage of the poor, unsuspecting “normal” moms).
We qualify for respite in Ontario, Canada because Katie has Ds. How could I possibly hand off my baby and little boy to complete strangers for a few days because mommy needs a spa vacation? It’s irrational.
Well now I well have that song stuck in my head all day!
Me too, just for Ds, it just doesn’t feel right…
I’m sorry but I feel like this statement doesn’t make sense .
” Disability does not always equate special needs.” …..
If you are disabled you have special needs .
I really think there is great overlap but they are separate issues. Especially once a person really thinks about what a “special need” is. A person who has fused fingers, for instance, might not need any accommodation whatsoever, yet I’d consider them disabled. I know children with intellectual disabilities who do not receive any extra services at their schools, yet they do have an intellectual disability.