Supporting families with special needs
but probably not as most would see it. You see, I have a child with Cerebral Palsy. Not that having CP is a blessing, but I have been able to see my child as a blessing to others, and that wouldn't have happened if he wasn't disabled. He has been on national radio as well as several video projects where people wrote him to tell him how much of a blessing he was to them. How cool is that? I sometimes struggle with the fact that people I would consider "complete dorks" have perfectly healthy children. Why do they get a pass when I have to "go through the valley"? "They don't deserve healthy children", I say to myself. But then I'm a hard-headed male. I ask myself, "would I have a heart for children with special needs if I didn't have one myself?" "Would my child be as spiritual and intelligent if he had been born without CP?" Good questions! I believe things happen for a reason. The problem is we don't always get to see the reason. But the best part for me is that God has allowed me to see some of the reasons why. I feel blessed to see just a glimpse. That's why I feel so strongly about passing it on. Hopefully you feel blessed as well.
I don’t know why, but I have always had a drive to make a difference. Is this a need we all share? Do we all long not merely to exist but to truly change lives for the better? It happens all the time in movies: people rise up from the drudgery of their lives to change the world. Popular culture is dominated by the idea that each one of us wants to be the Chosen One, at the center of some great story. If we all have these feelings, why is it so few actually get the chance to fulfill their dreams? Or are there, in fact, more people who change the world than we realize?
When we think about making a difference, most of us look to celebrities who have the influence to mold popular culture. This influence can be born of wealth, talent, a compelling life story discovered at an opportune time, or even just sheer exposure through the movies, TV, music, and books we all let into our homes. Bill Gates, Bono from U2, Oprah, President Obama; these are the people who can organize large followings to rid the world of things like malaria, or feed entire countries. We look at them and think: “If I had the money or fame I would use it to do good just like them.” I like to think I would make good use of that kind of power and fortune, but so far no riches have come my way. Sometimes I get the frustrating and depressing sense that I’ve done very little with my life: I’m sure I’m not alone.
Such morose feelings can be a real trap; they can suck us into gloomy, self-pitying defeatism. I applaud those who can rally large groups for a good cause, but I realized something today that I had forgotten. Life’s greatest changes come one person at a time.
Fifteen years ago, we decided to start a Sunday school class for children with special needs: we called it Special Friends. We didn’t have any children lined up; we thought there was a need, so we set up a room and waited for kids to start coming. Well, no one showed up! It was probably a little silly to think that, without any fanfare or even an announcement of our class’s existence, people would simply come out of the woodwork. In those first weeks, I don’t even think we even put our name in the church bulletin.
Have you had this happen? Someone you know comes to you and starts telling you about either a family member or a close friend, who has a child who they just found out has a special need? Sometimes it is maybe the same special need as you have been dealing with or maybe it is something different. Whatever it is, they have the look. The, I really want to help look that says they care for the person they have told you about, but I have no idea how to help? While I want to tell them many things, if I tell them too many things I will overwhelm them. So I was thinking, what are the best two things I can tell them about helping?
The first is, while this is a critical time for their loved one, it is not going to be over tomorrow. Yes some special needs can be fixed with surgery, and possibly be treated with medication, but even these solutions involve a long process of finding the right physician ect.. It is very similar to disaster. While immediate help is great, a year from now there will still be needs. After the casserole's stop coming and the church stops asking how they can help, they are still going to need you. It typically takes about two years in our town to get all the therapies and services in place. I don't know how long it takes everywhere else but I know it doesn't happen over night. They need you now, but they are also going to need you in the future, don't stop helping, don't forget just because when you ask they say everything is fine.
Second, it is going to be hard for them to tell you exactly how to help. Their mind will be taken up with diagnosis and specialists. When you ask how you can help they may not be able to give you a straight answer. Calling and telling them you are bringing dinner, or watch the kids for them while they go to the grocery store or out to dinner is huge!
I think these two things can make a big difference for their loved one. I don't think they are the most important things you can do. Consistently praying for them and their family will make a big difference. Doing these things will make a difference for you and the ones you care for.
While on an airplane returning from a disability summit in California, I was mulling over what I learned from those doing ministry to families and people with disabilities. But one question kept surfacing: how do we get it all done? The statistics are grim; 80 to 85% divorce rate; only 4% of churches doing anything about special needs; medical costs continuing to rise and our culture telling us to cut and run. How do we as God's people tell our church that this is what they need to be about? Most of the churches with a dynamic program have one because their pastor has a special needs child. How do we tell our pastor that these special needs people are included in the people Jesus was referring to in Matthew 25:40? How do I get my church to have the heart that God has given me? I asked that of someone and the answer was perseverance. Not a great word to hear when the need is so great. But it is the only thing that will get us to the place we need to be. "Therefore, among God's churches we boast about your perseverance and faith in all the persecutions and trials you are enduring. All this is evidence that God's judgment is right, and as a result you will be counted worthy of the kingdom of God, for which you are suffering." 2 Thes.1:4-5 (NIV) As one speaker at the summit said, "we have to be in the game." We can't look from the stands we have to step up to the plate. It won't get done if we spend our days whining about what we don't have. We have to be about the needs of our fellow man and I'd say our fellow families. To me it comes down to this; when my Lord returns may he find me about my masters business.
I ran across an article from the New York Times that addressed prenatal testing for Down Syndrome. It ran May 9th 2007 and was written by Amy Harmon and entitled “Prenatal Test Puts Down Syndrome in Hard Focus”.
According to the piece, 90% of women who are told their babies have it choose to have an abortion.
The author, Ms. Harmon, goes on to write about how some groups are trying to encourage these women to choose life over designated death. However, Harmon seemed to fixate on some groups who are against aborting babies with Downs syndrome for purely selfish reasons.
Said one parent: ''If all these people terminate babies with Down syndrome, there won't be programs, there won't be acceptance or tolerance. I want opportunities for my son. I don't know if that's right or wrong, but I do.''
