Chewymom

Brig is convinced that he is famous. He has been on tv (in the background), in the paper (lots of people in our town are in the paper), and he hopes to someday be on Ellen. He sees no problem with calling Ellen up and inviting himself to be a guest on her show because she is famous just like he is. They understand each other.

Delusions of grandeur.

So, a couple of weeks ago, his Special Olympics swim coach called me and asked me if Brig would participate in the Torch Run this year. The police officers in our city run the torch from City Hall to Walmart, where they gather on top of the Walmart and solicit donations for Special Olympics. I said, “SURE!” knowing Brig would love an excuse to miss a little bit of school.

I showed up yesterday morning at 8:00 at City Hall, expecting to drop Brig off and leave. I had a busy day with it being Ben’s birthday and all. There were little things like driver’s licenses to get and birthday cakes to buy. When Brig and I walked over to the small crowd gathering I realized that Brig wasn’t one of the Special Olympics runners. He was the runner. The torch bearer, in fact.

Meaning he spoke to the mayor. Had his picture made in front of the sign. Started the race with all of the police officers following him (many of whom he knew, because he is famous, of course).

So the race started, Brig enjoyed the attention, and I left. And a couple of hours later, his swim team coach called and said, “Tune in to xyz radio station! They’re about to interview Brig!” I was in the drive-up line at a local coffee shop, and I tuned it in, and just as the man asked for my order, here came Brig’s voice over the airwaves, not just of our city but of the whole surrounding area, because this was a station out of Huntsville! Surreal. I had called Chewydad who ran out to his car with a tape recorder and managed to record the interview. Click on the arrow to hear it (they talk to another person in the middle, but if you keep listening, they talk to Brig again at the end).
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 Brig on the Radio [2:41m]: Play Now | Play in Popup | Download

That night we tuned in to the local television news because I had noticed some video cameras present when Brig started the run. He wasn’t on, so we headed on out for dinner to celebrate Ben’s birthday. As we were finishing our meal, a friend called and said, “I just saw Brig on the news! They said his name and age and everything!” Dang it–we missed it! We’re working on getting a copy of the report.

So this morning I am awake before the rest of the family, except for Sam who has always had an internal alarm for 0-dark-thirty. I walked out to get the paper, opened it up, and found Brig on the front page!

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Hey Ellen, Brig is awaiting your call.

Check out this awesome video on You Tube! HT to The Suburban Christian,
found via one of my favorite commenters on here (and a great friend!) Glenn.

All of my adult life, I have heard people speak and preach about how as Christians we have an obligation to speak up for those who have no voice. The meaning of this was that we were to defend the unborn babies being aborted by the thousands and even millions. There were those who felt that everyone should join Operation Rescue. And then at one church where we had our membership, we were encouraged to participate in a march or at least a silent protest on Right-to-Life Sunday (the Sunday closest to the date of the Roe v Wade decision).

We–Chewydad and I–had family members get in our face and ask us exactly what we were doing to personally end abortion. We weren’t going to D.C. for the Right-to-Life march, and we didn’t picket abortion clinics. We might as well have been helping people get abortions in these well-meaning people’s eyes.

Some of the more radical tactics have died off, but there is still a movement among evangelical churches to pressure members to vote for only pro-life (Republican) candidates. The argument is still that as Christians we MUST speak up for those who have no voice. We must defend those who cannot defend themselves. I am starting to resent that pressure.

And I have a question.

Where are the Christians who have fought to give Brig a voice? Who has defended his right to be educated with his typical peers? Who has walked through IEP meetings with me, when I’m tearing my hair out because someone at the meeting doesn’t even want to allow him to walk through the halls of his high school without an aide present? Who sat with me while I was told that because of George W. Bush’s “No Child Left Behind” plan, my child cannot possibly receive even an occupational diploma from high school, but will only be eligible for a certificate of attendance?

Who is defending Brig’s right to have more than $2000 to his name and still get medical insurance? He will never be able to hold down a full-time job, he can’t remain on our insurance, and the only way to see to it that he can receive the medical care he (and others with disabilities) need is through Medicaid. Who is helping see to it that Brig will be able to have housing and a care-giver? I mean, we are setting aside money for that ourselves, but who is defending the disabled poor who cannot do that?

Who is standing up and giving a voice to the widows and orphans? The disabled? The poor? Sure, some of those have a “voice” and can vote, but some can’t. And some need a stronger, louder, and richer voice. Because let’s face it, money talks. If a homeless man walks into City Hall and demands change, he’ll be laughed out of the building. But let the richest man in town walk in, and people will be all, “Yes, sir. How can we help you sir.” So who of us that has respect because of our assets is defending and helping those who cannot help themselves?

As I have been reminded, no one candidate is going to be and do everything I find important. I am going to have to decide which issues are top priority for me. After years of defending pro-life candidates in the voting booth, I am coming to a point of needing to speak for others. Like Brig. And that is why, although I have in no way decided who I am voting for or even which party I prefer, I keep mentioning the name Obama. I can’t help but be impressed with him. Take a look at his Plan to Empower Americans with Disabilities. If nothing else, at least I can say thank you to Obama for desiring to empower and give a voice to Brig and his peers.

At this very moment, I am sitting in my den along with Brig and Ben. The Republican debate just ended and the Democratic one is about to begin. Ben pointed out that Brig (my son with Down syndrome, by the way) needs to pay attention because he will actually be old enough to VOTE in the presidential election! How exciting is that?

Brig responded, “I already know who to vote for. Barack Obama.”

About a year ago I made a bold move. I admitted to a small adult group from my church that I had [gasp] voted for a candidate who was not pro-life in the previous presidential election! This was quite a shock within this group. I’m not sure that anybody in our church has ever voted for someone who was not pro-life. Almost every car (er rather large SUV) in our church parking lot has a “W-The President” sticker on the back. If not that, then they have “S-The Coach.” As in Saban. University of Alabama.

One of my friends was quite alarmed at my statement, and said, “Wait! Don’t throw the baby out with the bath water!!”

So anyway, I clarified to this group that I am adamantly pro-life. I have a son with Down syndrome, and 90% or more of all prenatal diagnoses of Down syndrome end in an early termination. That offends me. And I want it to stop. But I no longer think it is a reality that a presidential candidate is going to overturn Roe vs. Wade. Yes, he (or she) may be able to appoint pro-life judges. But what then? If they overturn Roe v Wade, do you not think the congress will turn right around and re-overturn it? Or that the backlash in the next election will result in a president and representatives who will set into place a more permanent proclamation of this “women’s right?”

In my opinion, the most likely way to change opinions on abortion is one person at a time. My son hopefully does that all the time. He is a testimony to the fact that people with Down syndrome can have meaningful, fulfilling lives. That as children and teenagers, they are not a burden. I mean, sure there are struggles. Hard ones! It’s a pain in the butt to juggle the therapies when they are young. It is challenging to manage behavioral issues when they have limited communication abilities. It is a headache to fight with the IEP teams. But believe me when I say that my oldest son is not the only child who has presented me with parenting challenges. My middle child has spent significantly more time at the hospital than my oldest, what with his chronic ear infections, bacteremia, multiple broken bones, and concussions. My youngest has thrown far more temper tantrums and been much more of a discipline challenge than my oldest. Etcetera.

But back to the topic. Babies. Abortion. And elections. I am almost sick of hearing about Iowa, but I have to admit that I was tickled to hear about Obama’s big win in the Caucus last night. I really, really like this guy!! I find myself nodding and grinning and agreeing wholeheartedly when he speaks. And yet, I’m not sure my acquaintances in my little southern town with their “W” stickers are ready to hear that. And I’m not sure I am ready to defend it yet. And that’s where I hope you can help out.

And by you, I mean the two of you who are still checking in here, what with my lack of blogging for the last several months.

Those of you who are personally opposed to abortion, but who are inclined to vote for a non-pro-life candidate…how do you reconcile the two? How do you intelligently discuss your views with people who are single-issue voters? I’d love some ammunition input.

Annette lost her battle with cancer last night. Please lift up her family in prayer–her husband Tom, and her sons Ryan (who is the reason we met because of the Down syndrome connection) and Kurtis.

Annette, we will so miss your bright spot in our T-21 community. We love you and miss you. Thank you for being who you are and for sharing your family and your journey with us and allowing us to be part of your life.

Heavenly Father, Please be with Annette during these last days–maybe even hours–of her life. Let her be at peace with you and pain-free. Comfort her husband Tom and her children Kurtis and Ryan in a supernatural way during this time. Surround Annette and family with love and grace right now. Thank you for the gift of her friendship that was only made possible by an extra chromosome, and please also comfort our T-21 community as we lose someone we love….

I have a confession to make. I am part of an online community of moms who have kids with Down syndrome. And to be honest, sometimes I am envious. DS17 is one of the oldest kids represented on there. These moms of younger kids often discuss their educational choices, and I wish my son was younger than theirs so I could learn from them.

Over the course of DS17’s life, we have done it all. We have homeschooled him. We have sent him (part time) to a Christian school. We have had him in public school in both a regular and a self-contained classroom. When DS17 was little, he was in a fully contained classroom, meaning he had very little “typical” interaction during the school day. I have often regretted that and wished that I had been more aware, more educated, so I could have pushed to have him in a regular classroom at that stage of his life. In the younger years, the differences and delays are less noticeable, and I think spending the day with high expectations in a regular classroom would have pushed DS17 academically. Socially there was never much concern. DS17 had brothers, he was in a regular Sunday school class at church, and we treated him like our other kids. He was right on par in that regard. But academically, could we have done more??

Eventually we attempted to homeschool DS17 in an attempt to give him time at the Christian school where his brothers attended. It went great at first–we did a ton with life-skills development, and at the age of eight DS17 could do a full load of laundry from start to finish. He became a great helper around the house, and he was learning some academics as well, but not as much as we had hoped. We rejoined the public school system, only this time around we insisted on some time in the regular classroom. It was only a small bit, but he was able to even attend a five-day trip to Dauphin Island with the typical fifth grade class. And he absolutely thrived. We decided to never again force him into complete isolation in a special ed class. In middle school, there was no “special ed” at his school, so he was either fully included in regular classes or at the least in “learning disabled” classes. It was a rough three years in many ways. Hormones raged, and DS17 became frustrated academically. He acted out, and the school administration seemed unsure how to handle him.

Fast forward to today–he spends about half of his day in regular ed classes and half in what is known here as the Developmental Program. It seems to be a good fit. He has time with typical friends and time with kids who are at the same or lower level than him developmentally. Yet sometimes I wonder….I hear about young people with Down sydrome who are in regular ed classes in high school, who receive a regular diploma, and who go on to attend college classes. Could DS17 do that if we had pushed to include him fully in the early years? Would he be a better reader? Would his speech be more intelligible?

When I really sit back and try to imagine DS17’s life in about five years, after he is finished being served by our school system, I relax a little bit. In the grand scheme of how he lives the rest of his life, I suspect that those decisions that seem so major year in and year out, about how to educate him, what classes to choose, how much time to spend in which end of the building, will all kind of mesh together and seem a lot less significant than they do at the present and than they have over the course of his education. Even if he may have been “shortchanged” by not being challenged as much as he could have in the early years, he has lived most of his life in a stimulating environment, and he has developed the main thing that will carry him far in this world–a great personality. Even with our typical kids, in the grand scheme of who they become, does it really make a difference who was their third-grade teacher, or whether they were in math club for extra stimulation? Probably not as much as we’d like to think, as we’re pouring our time and energy into all sorts of extra activities.

So to answer my initial question–Are we making the best educational choices–I don’t know! I second-guess myself all the time. And yet, when I really look at who DS17 is, I don’t know that I would change anything, because all of that meshed together has contributed to who he is today. And strengths and weaknesses and all, he is a great person, and I have no doubt at all that he will have a successful and rewarding life and will hold down whatever kind of job he wants. Well, maybe with the exception of being a rock star or president.

DS17 announced the other day, “I know what I’m going to be when I grow up.” We’re pretty used to his long list. He’ll be very quiet for a while, thinking, and out he’ll come with a question about how to become a police officer. Or whether he can go ahead and join a rock band now so he can be a rock star. Or maybe a Nascar driver.

So, I asked DS17 what he wanted to be (THIS time), and said, “I’m going to be the president!”

Nevermind that you have to run for and be elected president. Which would actually be no problem for him–he has what it takes. He is very people oriented, and he is a typical politician–trying to say things to make everyone happy. Yeah, he could win.

He continued, “When I’m president, I’m going to make two laws: First, everyone has to be a Christian. Second, nobody can get drunk.”

So there you have it. When my budding rock star/veterinarian/police officer/Nascar driver/chef becomes president, watch out if you have a different religious persuasion or if you enjoy drinking that demon liquor.

Today we are celebrating low-key. No big party this year. Which initially offended DS17, I think. But he took it in stride, like he does so many things. Rather than sulk, he started telling people they weren’t coming to his party because he was only inviting famous people. When I laughed out loud at that announcement, he said, “Um, Mom?? I have Ellen’s phone number.” I assume he has put in a call to Ellen DeGeneres, inviting her to join us for the day. Ellen, if you stop by you’ll find a messy house, but plenty of birthday cake!

Although DS17 gives me so much blog-fodder, rather than retype what I’ve already said I will link to several posts that most capture who DS17 is and why we love him so much! And of course, most of my posts this month–October–have been about DS17 in one way or another.

Here is DS17’s birth story.

I wrote this post last year in honor of DS17’s sixteenth birthday.

Sweet insight into DS17’s heart.

Would I change anything about DS17?

One of DS17’s roles at our church.

I hope you enjoy reading some of my musings about DS17. As I have said over and over, for the most part, he is just another welcome member of our family. I know that we are all enriched by having him in our lives and by being loved so well by him.

So today, I wish you, DS17, a happy birthday filled with love, peace, and joy. (And famous people.)