December 7, 2006 3:34 PM
The future of my guys with Down syndrome
See why I call them the Downzers?
Such awkward construction.
The disability community has commanded that we are not allowed to say "Down syndrome baby" but rather "baby with Down syndrome" - they call that People First language. I get what they're trying to do is have people focus on the child rather than disability. However, our language is constructed so that adjectives sound best first rather than in a prepositional phrase. As a writer/editor I would prefer "the blue-eyed girl" in a long sentence rather than "the girl with blue eyes" - and when we're talking about writing a magazine article (or blog entry) to have to keep repeating "my boys with Down syndrome" just makes the writing drag, and when writing drags no one wants to continue reading.
Some politically correct militants might ask why I need to mention they have Down syndrome at all. However, much of the time when I'm writing about the Downzers, the fact that they have Down syndrome is relevant to what I'm saying - otherwise a new reader might wonder why the heck my 14 year old is not able to understand money denominations at all. I also almost always mention that three are adopted - that's because our society has instilled such a fear of Down syndrome in expectant mothers that I want them to know that when you have a child with Down syndrome you rarely give birth to another. I had one more baby after Jonny - Maddy, who is "normal" or whatever that means :) - and then we began adopting.
There's also the fact that while a lot of you have been reading here for a long time and know me as well as a friend you actually see in person, there is always someone new reading - because they googled "boys haircuts" or "teaching kids to tie shoes" or "Montessori at home" or "homeschool furniture."
If I sounded defensive in the last post about calling the boys with Down syndrome the Downzers it’s because about a year ago I called them that and was viciously attacked by a couple of people – one the mother of one girl with Down syndrome and the other a college professor. The mother said she’d never read me again. The college professor used my writing as an example for her students of horrible prejudice - like using the N word. When I say vicious, this woman was VICIOUS - sometimes I wondered if she'd appear at my door to have me lynched unless I agreed to see things her way.
It took me a while to get over that. I’d flinch whenever I started to say Downzers – which I guess was her intended effect.
But no more. I refuse to let someone who thinks they are serving the disability community by policing language dictate to me. After all, I’ve invested 24/7 for 14 plus 11 plus 10 plus 6 years in these boys and I intend to keep investing. While she's tried to change the world through intimidation, I've done my best through personal investment to change people’s hearts about Down syndrome and disabilities in general. And I think the work I’ve done is more meaningful and real than the PC patrol who only think they favor diversity.
Okay, off my soapbox, But now you all know where I’m coming from :)
Concerning my post this morning about the Downzers, Jill left this comment:
Barbara, I love this post. It really made me think. My husband and I would like to adopt an older child from foster care in the future, so I like to keep my ears open for good information about kids, their potential, and disabilities.I read mommylife all the time, and I'm curious: what do you see for the "Downzers" as you say in the future? Do you want Jonny or any of them to try to live in semi-independently? (If this is not an appropriate question, please forgive me!)
Jill, this is an entirely appropriate question and one that is beginning to loom large in Tripp’s and my lives. We are in our 50’s now (though since I’ve gotten in better shape I feel more like 25!) and the boys are clearly growing up fast. That’s what has made me rethink what is going on in their lives.
Because of Jonny’s involvement in the community, we meet a lot of teens and young adults with disabilities. Loudoun County is really rich with activities and pretty good about job opportunities for people with disabilities and if we remain here, the boys will never want for a social life – as long as I’ve prepared them to enjoy it.
As we’re out and about with them at theater and sports, I also have the opportunity to talk to parents of older kids and get a glimpse of what may lie ahead. We know many young adults with disabilities who have jobs in the community and also some that are living independent of their family with varying amounts of supervision. We know some in group homes.
What I’m hearing is that most eventually want some degree of independence and so I want to be prepared and open for whatever the boys need as they get older. That might not be the same for all of them. Actually, what might be great is if they could stay together and be roommates with whatever degree of supervision they need.
I’m not looking to push them out of the house and if someone – like Jesse perhaps – ends up needing to live at home forever, that’s fine. We’ll just have to take it one step at a time.
My older kids know that the responsibility may fall to them someday, but as Christians most of them understand that’s just part of God’s plan for their lives. I know Samantha feels much better now that I have dealt with my overweight and the health issues it caused resolved themselves. The abdominoplasty has made me stronger and more agile physically – I actually feel 28 rather than 58. The way I feel I hope to live into my 90s and still be able to serve others.
But that’s up to God, and I have to trust that he not only has a plan for me, but also for the Downzers. My job is to keep myself as healthy as possible – physically, emotionally, and spiritually so that I can continue to serve and to be open to understand and facilitate his plan for each of them.
Posted in Disabilities, Down syndrome, Family, Mothering | Permalink
Comments
Barbara, thanks for your 2 posts about your "Downzers". I got a laugh out of the language issue. Boy, have we dealt with that! Our perspective is like yours: we've invested our lives into Evan, so I don't think anyone has a right to judge our commitment to seeing him integrated into society in the best possible way. We (and you) have "walked the walk" as they say. On the issue of the future, I loved it when you wrote, "...I have to trust that he not only has a plan for me, but also for the Downzers." God brings us to that point again & again. As Evan prepares to graduate from high school next May, I reassure myself again that God has a wonderful plan for him. Aren't you glad we have a wonderful Father to lean on? I sure am!
Posted by: Lori F | December 7, 2006 4:35 PM
Thanks for responding to my question! I wasn't thinking you'd want to "kick them out"!! :) I'll enjoy reading about their journeys.
Posted by: Jill (colicmommy) | December 7, 2006 9:13 PM
I think it is completely up to you how to refer to your children.
When my Sissy was little, people (mostly older) occasionally would refer to her using the "m" word. It drove me crazy and I felt I needed to correct them. However now that I have matured (at least I hope) in my parenting journey, I seldom correct anyone. They almost certainly do not intend to offend me and correcting them, unless it is done gently and very lovingly, can create more problems then a causal encounter is worth.
I think of my daughter as a down syndrome child.
Here is the (probably flawed) logic behind doing so.
DS is not a disease, you can not catch it or develop it, so I would not use the term the same has I would say...chicken pox. If she had them, she would not be a chicken pox child, but rather a child with chicken pox.
DS is part of her, every cell in her body has that extra chromosome. It affects almost ever aspect of her life. She is a different person than she would have been without it. Her smile would not be the same. She would be planning out the rest of her life, instead living in the moment, wanting me to sing to her or read her a story. The consequences of her headstrong, rebellious nature, could be very long term, instead of just meaning a difficult evening.
To me she is a down syndrome child, a beautiful and unique blessing that I am very grateful (especially on a good day,) to have in this life, but I can hardly wait to see who she will be in the next!
Posted by: wanderingrose | December 7, 2006 11:13 PM
Thanks for that, Barbara. :)
I'm not sure why, maybe because you have four sons with Down Syndrome...but I was wondering what your plans were for their future.
Oh. I remember. I was wondering what life would be like if my family and I adopted children later in life. :)
Posted by: Holly | December 9, 2006 9:42 AM
