Thursday, February 25, 2010

The Locals

So, I went to the local Ds group a few weeks ago. I just took Ellie, 10, and Eon while dad stayed home with the rest...didn't want to overwhelm anyone. It was good. I'm not sure what I was expecting, but I didn't get it.

I think I was hopeful for this instant connection with the parents there. I've been spoiled by my blogging friends and online support group. I feel an instant connection with someone I've only communicated with through words on a page, but real life seldom measures up, I suppose. When I mentioned online support, I got blank looks. There also didn't seem to be a great deal of awareness about current hot topics...the r-word, the "cure", etc.

Honestly, I was disappointed.

The good news is that I went to the Mom's Night Out this week and loved it! It is more city-wide than the local group which is specifically for my side of town. Eon was the youngest represented, but it didn't matter. We were there just to have a good time. At the Mom's Night, I met a gal who has a son who's a year older than Eon and she lives pretty close to me, so that was good. I'm looking forward to getting to know her family better.

One of my beefs with the local group was that I felt instantly judged by the teachers that were present (there were a lot of them, it seemed) for our choice to homeschool our children. You know how it is when you are asked polite questions with a bite: "Where do you get your curriculum?" "Aren't you worried about socialization?" "You won't do it in high school will you?"
Sigh. This is our eigth year of homeschooling. These questions are not new to me. The truth is our kids are doing great, it works for us, and I don't really think it's anybody's business. It's not like I advertise it. On of the teacher-moms asked Ellie where she goes to school and it went south from there.

I was expecting to be admitted to the club on the basis of the extra chromsome that has blessed our family, only to feel excluded for another reason. When am I going to learn? We're a freak show, I tell ya.

Somehow, I doubt attending the next meeting with our six children in tow will help matters any, but we'll give it a whirl. :)

Friday, February 19, 2010

Why are we afraid of Down syndrome?

I posted this on the amnio board on today.

Of all the things that can go wrong with a child - cerebral palsy, cancer, emotional issues, teenage rebellion (drug use), etc. - why is it that Down syndrome seems to strike the most fear in our hearts?

I'm not being judgmental...I was right there, too. When Eon was born (odds were 1:20, declined amnio) and we were told within minutes of his birth that he had Ds, I was terrified! It felt like the air had been sucked from the room. The fear abated when I finally held him and looked into his sweet face, but I won't deny that it was my first response.

I think back to that, now that I know my fears were completely unfounded, and wonder if I would've been as afraid if it had been something else. I like to think that I would've been, but I don't know.

I don't think we're really afraid of actual Down syndrome, but rather the image of Ds that we have in our heads...the adult with Ds in our childhood neighborhood with the institutional hair cut and the garbled speech...or the kid with Down syndrome at our school coming out of his special ed class at lunch who always tried to hug us...or our great Aunt Sue's memory of her little "mongoloid" brother who was a burden on the family until he died at 25.

The reality is that Down syndrome doesn't look like that anymore. Early intervention and medical advances have changed the face of Down syndrome.

First, people with Down syndrome don't suffer. This is a group that embraces life and expects us to do the same. In the words of American Idol contestant Maddy Curtis (who has 4 brothers with Ds), "They see the world in color and we just see it in black and white."

Second, they are not a burden. Babies who are born with Ds today are expected to live independently as adults with only minor support. We are seeing young adults work meaningful jobs, attend college, and even marry.

Third, they are more alike than different. Kids with Ds will learn to do all the things typical kids do...walk, talk, read, attend school, fight with siblings, just may take them longer. They can be fully involved in sports, music, dance, karate, etc.

There are some health issues associated with T21. Most are minor and easily corrected and not every kid will have them. It's absolutely possible to have a perfectly healthy baby who also has Down syndrome. Heart issues are scary, but often don't need surgery and if they do, the surgery is considered routine and has a high success rate.

If we have other kids, we're often worried over how Ds will affect them. I know I did. Good news! Siblings of those with Ds have been shown to have higher levels of empathy, compassion, and tolerance than siblings of typical kids. Aren't those qualities we want our kids to have? Studies have also shown that parents of kids with Ds are actually more likely to stay married than those without.

It's not a cake walk. Parenting seldom is. All kids have challenges. With six kids, I know this better than anyone. With Ds, at least we get advance notice of what some of them may be.

Wednesday, February 17, 2010

Oh Jesus, come quickly.

I just read a blog post about The Family Guy and Sarah Palin's response to the show's treatment of a character with Down syndrome. Palin seemed more upset over the fact that the character stated her "mom is the former governor of Alaska" than anything else. I don't know what I think of all of that, BUT, one of the commentors on the blog post wrote, "Oh Jesus, come quickly."

Something in my spirit just went "grrrrrrrrrr." Really?! We're calling for Jesus to come quickly because we're
offended by something on television? Never mind that babies are being killed in utero, children with special needs are being abused and neglected to death, children are being trafficked into the sexual slave trade, and thousands of children are being orphaned and left to fend for themselves by AIDS in Africa. But, don't worry about all of that. We want a free pass out of here because someone might say something that will hurt our feelings.

Most people say that when they see evidence of evil or injustice in this world, and I can't help but think, "If this is the only evidence of evil or injustice we Christians in this country notice, then we need to get out more." There is something seriously wrong with a soul that wants to throw in the towel because of something they watched on FOX television.

How can we be so repulsively apathetic about social injustice in this world? When did we start to decide that it is all about
us? Our comfort, our feelings, our lives? Where do we find that in Scripture?

I'm just sayin'.

Tuesday, February 16, 2010

Sunday, February 14, 2010

Feeling a little undone

Other than a comment or two on some of my favorite blogs, I have pretty much stayed out of the r-word fray. For those of you not in the Ds community, the r-word is "retard" or "retarded". It is being used as slang to mean "stupid" and its use is increasing at an alarming rate, as far reaching as the White House and as close to home as extended family. Perhaps, in a future post, I will attempt to explain why those words are hurtful, but for now, I just want to vent.

I have an opportunity to speak to the youth of our church about this topic. Not wanting to come off as preachy and irrelevant, I wrote a post on my Christian homeschooling forum asking for advice. I gave a little background on why the word is hurtful and then asked for input on how I could present it.

I was completely unprepared for the backlash that ensued. I am so naive. I had no idea that I would have to defend my position on this board, of which I've been a member for seven years. These people were my online family. They congratulated us on the births of four of our children, including hearty congratulations for the birth of Eon, which I desperately needed. They prayed us through heart surgery and our overwhelming first year with him. I felt safe there.

Don't get me wrong. I'm not shy. I love a good debate...when I know it's coming. This just blindsided me.

You know what? I just went through and reread the entire thread to find quotes to post here and had a startling revelation: 33 people responded to my post. Of those, only 3 had anything negative to say. Thirty people were encouraging, defending, and supporting me. A few people even said that they had no idea those words were hurtful and they will stop using them!

And here I tears. So focused on the measly three, that I could not embrace the support I'd been given by the other thirty. Isn't that just like us? Only focusing on what's wrong and forgetting to celebrate what's right?

Shame on me.

Friday, February 12, 2010

Annual Evaluation

Eon had his annual evaluation for First Steps, Indiana's version of early intervention. It's performed by a team that works outside of our county, not his current therapists. The OT that did his initial eval returned. It was so fun to see her again and she was so excited to see Eon. She raved and raved about how big and cute he is. I remember that when she did the initial, she brought me an article about three adults with Down syndrome that are doing really well and loving life. She also brought me a copy of "Welcome to Holland", which I'd seen before, but really appreciated.

I reminded her of that yesterday and told her what a blessing it was to receive those when the diagnosis was so fresh.

They asked a gazillion questions and put him through his paces. I've mentioned before how Eon just stares at people suspiciously if he doesn't know them, but he must be loosening up a bit, because he actually smiled at them and laughed at the DT. About halfway through, one of them mentioned that he was scoring too high to qualify for services and the other reminded her that he qualifies on diagnosis alone! I was very pleased that he is doing that well. The IFSP is in a few weeks, so we'll see how he really did, but I think he's doing great and that's really all that matters.

Deb, the OT, asked me if I've connected with anyone locally on the same journey. I expressed my frustration over the fact that I haven't. I told her that I'd looked on the DSI website and the southside support group isn't meeting now. She made a call and, low and behold, they are meeting and the next meeting is.......tonight! I am so excited! Eon and I will be in attendance while Dad stays home with the rest of the crew. (We decided not to overwhelm anyone on our first introduction:)

I'm so hopeful that I can find someone who has a child near the same age so Eon can have a buddy. I'll let you know how it goes.

Friday, February 5, 2010

Happy Birthday, to me!

So, today I turn forty. Eon gave me a precious gift this morning. We bring him into bed with us every morning around six and he sleeps for another hour. Ben (4) and Zak (2) joined us around seven. I turned on PBS for them and rolled over. When I finally sat up, Eon was sitting up with his arm around Zak and was lightly patting him. After a minute or so, he leaned around him to see Zak's face and they shared the biggest grin! :)

It made my day!

Tuesday, February 2, 2010

This is a post I wrote last year at this time. I read something recently that made me dredge it up again. Not specifically related to Down syndrome, though.

We don't like the term "anti-abortion". It's a term the media and those "prochoice" coined to avoid the term "prolife". And yet, for most of my life, anti-abortion was a better descriptor of who I was than prolife. Oh, I called myself prolife, and I had the republican voting record to back it up. I was against abortion. Isn't that what "prolife" means?

I don't think so. Can you call yourself prolife and make comments to a mom with a large family like "better you than me" or "don't you know what causes that?" Can you call yourself prolife and fail to offer sincere congratulations to a newly pregnant mom who already has a 5 month-old baby? Can you call yourself prolife and scorn the pregnant teen, more interested in how she found herself in that position than with the precious baby she's carrying in her womb? Can you call yourself prolife and honestly think that the struggling mom with four under the age of five has too many children...even if part of her struggles are financial? Can you be prolife and look at my new baby and see anything less than a perfect gift from God?

NO! The answer is emphatically no. See, prolife means to be for life, not just against abortion. We have to support life and be certain in our own minds that God is the author of life. Let me say that again. God is the author of life, regardless of the foolish choices or less than desirable circumstances surrounding it. He alone decides who should be. Every life that He creates is cause for celebration.

Pro means "for". Being truly prolife is much more difficult than being anti-abortion. Being against abortion means voting our conscience, emailing elected officials, speaking out against it, etc. Being for life involves so much more. It means loving people as Jesus does; hating the sin, but embracing the person. It means giving time, money, and support to those who are in the field ministering to someone with an unwanted pregnancy. It means stepping outside of ourselves and offering help to those who were brave enough to choose life. Most importantly, it means taking a long, hard look at ourselves and asking the Holy Spirit to reveal any thoughts, attitudes, or actions on our part that are not consistent with the Word of God regarding life.

That last step is the hardest. I know. There were many for me. But God is able to change the most ingrained paradigm for those who are willing to adopt His perspective. Choose life!

I would add that considering adoption of one of the 147 million orphans worldwide is an excellent place to start. If you are not in a position to do so, support someone who is!