Perhaps you've heard that two Minnesota Lawmakers want to give the Metrodome to the Minnesota Vikings. What a brilliant idea! It's creative, it's new, it's fresh and it doesn't add a new tax burden to anyone in the state!
Unfortunately the Minnesota Vikings have said that won't work for them. They want, no they're now demanding a NEW stadium. "Even stadium opponents understand the facility no longer works for the team, our fans of the state," team spokesman Jeff Anderson said.
Well, Mr. Anderson, Mr. Wilf, Mr. Mondale and all the rest of you, do what the rest of us do, make it work!
It doesn't really work all of the people with disabilities that took a reduction to their budgets as of September 1st this year and will take another reduction July 1st 2012!
It doesn't work because they have less staff because the staff quit due to getting paid less, or they have to cut back in some other place just to take care of their family member who has a disability.
It doesn't work for those families who lost health care because the parents can't hold a full-time job because they're absent so much due to the poor health of their disabled child and they can't get state run insurance because they're just over the threshold to qualify.
It doesn't work for the adult children of aging parents who lost their home because the services that helped them take care of their parent were cut.
It doesn't work, but they make it work. They have no choice. They come up with creative solutions and have to find a way to make it work. It's time for you to do the same. You've been offered a gift. Take it. Christmas is here now. Take your gifts and be thankful.
Saturday, October 22, 2011
Wednesday, September 7, 2011
Full Circle
Yesterday I realized we had come full circle. I went to Vicki's first day of "school" at her new transition program. Let me start by saying the staff was great! Vicki will do just fine with them. They were enthusiastic and interested and engaged! We've had good staff for most of the years she's been in school so we've been very happy.
What upset me was the fact that I was doing the same thing I have done for the last 13 years - training someone on Vicki's technology to get her through her day. In addition to that, Vicki was doing the same thing yesterday that she has done for the last 13 years. Waiting, while I talked with her staff.
I also realized that she will be doing *many* of the same things she was doing 13 years ago - working on driving her chair, working on communicating with her electronic talker, waiting for someone to assist her with cares.
It was enormously frustrating to realize that she's been in school for all these years and she's still doing many of the same things she did as a 6 year old. It's not that good people haven't been working with her, it's not that she hasn't had good opportunities in a wide variety of settings. It's merely that her disability has kept her from progressing in many areas.
It seems to cap off the feelings I had at graduation. The rest of her peers are moving on while she remains pretty much where she was when she entered kindergarten. It's an enormously frustrating feeling. I want so much more for my daughter and yet it seems after all these years we are right back where we started.
What upset me was the fact that I was doing the same thing I have done for the last 13 years - training someone on Vicki's technology to get her through her day. In addition to that, Vicki was doing the same thing yesterday that she has done for the last 13 years. Waiting, while I talked with her staff.
I also realized that she will be doing *many* of the same things she was doing 13 years ago - working on driving her chair, working on communicating with her electronic talker, waiting for someone to assist her with cares.
It was enormously frustrating to realize that she's been in school for all these years and she's still doing many of the same things she did as a 6 year old. It's not that good people haven't been working with her, it's not that she hasn't had good opportunities in a wide variety of settings. It's merely that her disability has kept her from progressing in many areas.
It seems to cap off the feelings I had at graduation. The rest of her peers are moving on while she remains pretty much where she was when she entered kindergarten. It's an enormously frustrating feeling. I want so much more for my daughter and yet it seems after all these years we are right back where we started.
Saturday, August 27, 2011
JAF Family Retreat
One of the highlights of our summer for the last 3 years has been Joni and Friends Family Retreat. It is held at the Castaway Club in Detroit Lakes, MN. It is a beautiful campus and very accessible!
This year we were privileged to be a part of the training of the STM's - Short Term Missionaries. Laura, Vicki and I all had a chance to talk about our experience as campers and what it means to have the STM's come alongside us.
Because we were there early, we also got to help greet the campers. I enjoyed welcoming everyone, but especially two families that I had personally invited.
This year we were somewhere between campers and staff. Laura graciously gave massages for 2 hours when one of the scheduled therapists couldn't make it. I taught a break-out session on "future planning" - wills, trusts, guardianship and much more.
We experienced a great deal of freedom as our littlest boys know the camp and are very independent in what they want to do. Tim did the climbing wall and hung out at the beach. Andrew was on the inner tube and banana boat behind the speed boat, tried the big swing with Stephanie and did the zip line a few times.
The whole camp was treated to a "Fiesta Night." A couple came with salsa music and tried to teach us to salsa. They were amazingly patient and while I'm not sure how many of us did the actual steps, EVERYONE had fun and tried some form of dancing. The best part is that it didn't matter if you were in a wheelchair, walked with canes, or used your feet to get around, EVERYONE was included.
The fact that everyone who wanted to participate was included is one of the best things about Family Retreat. Nobody sits on the side because they're in a wheelchair or because they have a unique behavior. Instead everyone is embraced and welcomed.
One young man danced with everyone he could drag out there. At one point he came over to me and said "Are you a Bears fan?" I said, "Nooo, a Vikings fan!" "Well then," he said, "Get out there and dance!" I had such fun trying to keep up with his energy.
I want to make sure that you know how great the STM's are! They come to dedicate their time to our families. They help us get a break from some of the caring for our family members so we can go to worship and teaching and small group time. They come from all kinds of backgrounds, some very familiar with disability and some first timers. Regardless of their experience, they throw themselves into the person they are assigned to and just love them for the weekend.
That love that they give is not to be taken lightly. It's love that looks beyond an individual's behavior or need for care and looks at the PERSON. The STM's are truly an example of Christ's love for the world.
We had an amazing time and it goes by so fast!
In an earlier post I talked about the gaps between my daughter and her typical peers at graduation. Family Retreat is exactly the opposite. There are NO gaps here! There are only people who are celebrated for who they are. Unlike graduation where I couldn't wait to leave, I hate to leave Family Retreat.
Wednesday, June 15, 2011
Interview with Kare 11
Today we had another privilege in our journey of "Raising Prices." Kare 11 was doing a story on a national survey that The Arc had done regarding services for those who have disabilities. We were asked to be interviewed for that story that aired here at 4pm and 5pm.
While it was fun for us to do, the key reason for agreeing to do the interview was to raise awareness and advocate for ALL families who rely heavily on government services in order to care for their loved ones who have a disability.
Here's the story:
While it was fun for us to do, the key reason for agreeing to do the interview was to raise awareness and advocate for ALL families who rely heavily on government services in order to care for their loved ones who have a disability.
Here's the story:
Monday, June 6, 2011
Graduation?
Yesterday was a day that I will remember for a long time. It was filled with hoopla and giddiness and hope and excitement and nervousness and sadness and emptiness. Sadness and emptiness? Yes. Why? Because it was graduation.
I suppose you're thinking that I must be talking about the sadness and emptiness of watching your "baby" grow up and get ready to move on. Nope, not even close. It's a sadness and emptiness I had not expected. Sad and empty because the gaps between my daughter and her typical peers were magnified to such a degree that they hit me between the eyes once again.
While most of the kids and their parents are talking about heading off to college or the military or to get a job, we are talking about MANY of the same things we talked about when she started school - who will take care of her, how can we get her involved in such and such, what doctor's visits do we have coming up, etc.
It was actually hard to go through the ceremony. I really could not wait to get out of there. I wanted to leave because I didn't like the magnifying glass that showed so clearly all of the things my daughter was NOT going to do.
(I should point out that the amount of cheering from students and the audience was actually the loudest overall for the students in special ed. That was one positive I took away from the ceremony.)
Having waited two months to post this, I reviewed it to see if the emotions were still there or if it was an "in the moment" thing. Sadly, they're still there. The graduation ceremony is painful to think about.
On a more positive note, we did have a celebration for Vicki in mid July. About 100 people came and congratulated her. It was a special day for her and as my wife said, "it was a day to celebrate her life."
One of the things you become good at when you have a child with a disability is adapting things. We've adapted toys and games and equipment and now, we've adapted graduation. For Vicki, graduation was less about making it through 4 years of credit based classes and more about merely making it through. Sometimes even enduring the days of not wanting to be at school or feeling poorly or not feeling like she was a part of the larger picture of Andover High School. Graduation was merely a marker. A marker that says "you've made it this far, keep going."
I suppose you're thinking that I must be talking about the sadness and emptiness of watching your "baby" grow up and get ready to move on. Nope, not even close. It's a sadness and emptiness I had not expected. Sad and empty because the gaps between my daughter and her typical peers were magnified to such a degree that they hit me between the eyes once again.
While most of the kids and their parents are talking about heading off to college or the military or to get a job, we are talking about MANY of the same things we talked about when she started school - who will take care of her, how can we get her involved in such and such, what doctor's visits do we have coming up, etc.
It was actually hard to go through the ceremony. I really could not wait to get out of there. I wanted to leave because I didn't like the magnifying glass that showed so clearly all of the things my daughter was NOT going to do.
(I should point out that the amount of cheering from students and the audience was actually the loudest overall for the students in special ed. That was one positive I took away from the ceremony.)
Having waited two months to post this, I reviewed it to see if the emotions were still there or if it was an "in the moment" thing. Sadly, they're still there. The graduation ceremony is painful to think about.
On a more positive note, we did have a celebration for Vicki in mid July. About 100 people came and congratulated her. It was a special day for her and as my wife said, "it was a day to celebrate her life."
One of the things you become good at when you have a child with a disability is adapting things. We've adapted toys and games and equipment and now, we've adapted graduation. For Vicki, graduation was less about making it through 4 years of credit based classes and more about merely making it through. Sometimes even enduring the days of not wanting to be at school or feeling poorly or not feeling like she was a part of the larger picture of Andover High School. Graduation was merely a marker. A marker that says "you've made it this far, keep going."
Saturday, May 21, 2011
Harmon Killebrew
As many of you may know by now, Harmon Killebrew, a former MN Twin, died recently. It always tugs at my heart when a personality such as Harmon leaves this world. It's a bit more personal when you've had the privilege of meeting this person. I had the opportunity to meet him 3 times over the last few years. And while I'm confident he wouldn't know me from Adam, it still feels like you lose a friend when they die.
The following link has a short video recap of Harmon. In it is a picture of our kids with Harmon on one of the 3 times I met him. The most amazing things about those meetings is that he treated every child as if they were his ONLY grandchild. He gave EACH kid time, and didn't move on or whisk any kid away. I will treasure those meetings always.
You will find the photo about 1:28 into the video.
The following link has a short video recap of Harmon. In it is a picture of our kids with Harmon on one of the 3 times I met him. The most amazing things about those meetings is that he treated every child as if they were his ONLY grandchild. He gave EACH kid time, and didn't move on or whisk any kid away. I will treasure those meetings always.
You will find the photo about 1:28 into the video.
Wednesday, April 20, 2011
Dangers in Facebook
In earlier posts, I made the argument that things like drugs, pornography and even Facebook CAN banned inside our homes. In making the argument about banning things, There's been one comeback I'd like to address. That comeback is "You can't compare Facebook to drugs or porn." Well, I would disagree. First of all, Facebook has porn available all the time. Oh no, not the hard stuff, but take a look at all of those pictures posted and you're sure to find at least one person wearing something that leaves little to the imagination. And comparing it to drugs, that's a slam dunk. It's already been written about that Facebook has been found to be addicting.
But whether or not you agree that Facebook and drugs or porn are the similar, there's still significant dangers for letting a child use Facebook or any other social media.
1. Most children do not have the ability to think into the future. They will not be able to understand that what they write today will be seen by a potential employer in a few years. Let's not forget that many of the kids hope to be married some day. How will that conversation go with the future Mrs. or Mr. when they have to explain why a picture of such and such or why a post stating this and that was on their Facebook page?
2. Many, Many, Many people online are not who they say they are. Don't think your kid will talk to that creepy guy? You haven't seen enough 20/20 type shows.
3. Data is mined. Huh? You mean someone is watching my child? Oh yeah. Any idea why those ads started showing up in your email? Who's email address did they open the account with? Almost every story about what happens to Facebook data is BAD. 'They lost this set of data' or 'someone stole that set of data.' If you put in on the web - even in this blog, EVERYONE can see it and a LOT of people can get it.
4. The more the kids are using social media for relationships, the poorer those relationships are in the long run. You can't possibly interpret body language and voice inflection from reading a post or even looking at a photo - no matter how many emoticons you use. :) ;) :0
Perhaps none of the above concerns you. Well, it does me. I've watched or read the stories over and over and over how someone's life is impacted or even ruined and Facebook played a large part in those disasters. I plan to both protect and educate my children on the dangers of being involved with such a medium as Facebook. I'm not necessarily popular, but my family is also not suffering the ill effects of being involved with it.
But whether or not you agree that Facebook and drugs or porn are the similar, there's still significant dangers for letting a child use Facebook or any other social media.
1. Most children do not have the ability to think into the future. They will not be able to understand that what they write today will be seen by a potential employer in a few years. Let's not forget that many of the kids hope to be married some day. How will that conversation go with the future Mrs. or Mr. when they have to explain why a picture of such and such or why a post stating this and that was on their Facebook page?
2. Many, Many, Many people online are not who they say they are. Don't think your kid will talk to that creepy guy? You haven't seen enough 20/20 type shows.
3. Data is mined. Huh? You mean someone is watching my child? Oh yeah. Any idea why those ads started showing up in your email? Who's email address did they open the account with? Almost every story about what happens to Facebook data is BAD. 'They lost this set of data' or 'someone stole that set of data.' If you put in on the web - even in this blog, EVERYONE can see it and a LOT of people can get it.
4. The more the kids are using social media for relationships, the poorer those relationships are in the long run. You can't possibly interpret body language and voice inflection from reading a post or even looking at a photo - no matter how many emoticons you use. :) ;) :0
Perhaps none of the above concerns you. Well, it does me. I've watched or read the stories over and over and over how someone's life is impacted or even ruined and Facebook played a large part in those disasters. I plan to both protect and educate my children on the dangers of being involved with such a medium as Facebook. I'm not necessarily popular, but my family is also not suffering the ill effects of being involved with it.
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