MN Vikings: That Doesn't Work for Us!

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.

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.

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.

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:

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."

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.

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.

Yes, you can ban Facebook, part II

... Previously I talked about banning things in the home and some of the arguments against having a ban on a particular activity like Facebook, or the content of something like TV.

Another way parents get around banning something is to say "If my child is doing it, I'll just do it so I can monitor them."

Try using the argument regarding Facebook that sounds like this, "My child has a Facebook account so I need one to monitor him/her" and then replace Facebook with pornography or drugs. It would sound like this: "My son views pornography, so the best way for me to understand him is to view it myself." Or, "my daughter is smoking pot. The best way for me to understand her is to smoke it myself." REALLY?

Where does the idea come from that if a child is doing it, we as parents must be the followers and do the same? I would not allow myself to try drugs or view pornography on my own. So why would I do it just because my child was doing it? Going back to social media - why would I have to be on Facebook or any other social media just because I learned that my child is on it? Hmmm, I guess I don't, do I?

There is an argument that completely banning something can make it more tempting. I agree that this could be true, but by banning something, it also tells our children what we stand for. We can say to our kids, "We ban drugs, because we know how harmful they are for you." We can also say "We ban Facebook because there are many dangers in using Facebook that you are not aware of." (A topic for another post)


The crux of this discussion is "who's in charge?" Are we, the parents leading the way? Or are our children and society taking control?

Coincidentally, I read an opinion piece that has a different topic - How children dress - but it addresses the same argument of who's in charge. You can read the whole article here, but I will quote the part I found most interesting:

"I don't care how popular Lil' Wayne is, my son knows I would break both of his legs long before I would allow him to walk out of the house with his pants falling off his butt. Such a stance doesn't always makes me popular -- and the house does get tense from time to time -- but I'm his father, not his friend.

Friends bow to peer pressure. Parents say, "No, and that's the end of it."

The way I see it, my son can go to therapy later if my strict rules have scarred him. But I have peace knowing he'll be able to afford therapy as an adult because I didn't allow him to wear or do whatever he wanted as a kid."

Now that's a dad that's setting a standard! Eventually, therapy or not, his son will thank him for at least setting a standard. He will thank him because kids are always pushing against the boundaries or rules to see if we will stand firm and uphold them. They aren't just testing us. They actually want the boundaries so they will feel safe! Believe it or not, they really want boundaries, but the only way to see if they exist is to test them.

The bottom line of my last two posts is that as parents we can and should set standards. Is it hard work? Absolutely. Are we often alone. You bet. Are "bans" necessary some times? Oh yes.

So we have to ask ourselves - Do we want our kids merely to be our friends? Or are we more concerned about setting a firm foundation in their hearts as we work to build moral character while working on a relationship with them?

I'm with the dad in that article.

Yes, you can ban Facebook!

I recently read some discussion about how much to control our kid's access to social media. The focus was on the question, "What do we do about access to Facebook?" Several items were written stating that the parents felt there was no way to ban social media at home.

I find it interesting that many parents think that they can not ban things in their own homes. The arguments used sound like this. "They'll just do it when I'm gone." or "They have friends to help them do it." Yep, those are very true statements, but that shouldn't prevent us from setting precedents in our homes - even if it means banning something.

It is a very hard thing to try and ban anything. If you ban something at home kids can and do access it elsewhere. But it is also true with: content on TV and radio, drugs, alcohol, cigarettes, pornography, and the list goes on. Most people ban drugs and porn. Others are mixed on alcohol and cigarettes. TV and radio are perhaps the closest thing to social media since they are content based.

By way of example, we have bans on many things in our home: TV, radio, and internet content, drugs, porn, and cigarettes. Once in a blue moon you might find alcohol in our home (and no, we don't share it with the kids).

So we've set a precedent and started with the standard that those items are banned in our home. We don't merely ban something. We communicate with our kids why we don't think it's a great idea for them to view, use, or participate in the things we've banned. (Side note: we don't use the word ban. We merely say we don't watch that or we don't participate in that.)

We also communicate that we don't want them to participate in those things when they are not at home. Do they always follow the rules? No. But do we always come back to the standard when we learn of their participation in a banned activity or content? Yes. That's where we start the discussion and work toward an understanding of why we've banned those things at home in the first place.

Do they follow the rules some of the time? Yes. And they talk about how good it felt to say to their friends something like "I'm not going to watch that because it's has things in it that aren't good for me to see." OR "I have to check with my parents before I play that video game." They're proud of themselves for standing up for something the family values at our home. We also use those times to praise them and teach them how good it is to stand up for the values of your family.

To be continued...

Isolation

Disclaimer: This post is NOT an indictment on any of our friends or family. If you know our family and read this and feel like I am talking about you specifically, you've misread it. It is a general observation that I've made as I've watched families age.


I've been witness to something in the last few years that's hard to explain and yet is a reality for anyone with a significant disability or emotional issue. The phenomenon is that as these individuals age they become more and more isolated. When a child is small and has some type of behavior or significant need, those around that child deal with it. They may put up with it or they may ignore it, but for the most part, the child still goes through life with a fair amount of people around him or her - classmates, teachers, friends, family etc.

As that child ages and the behaviors or the needs continue, the child starts to lose some of those around him or her that they used to interact with. Some things are merely natural - all of us go through it. Kids graduate from high school and they leave their circle of friends to go out into the world. When this happens, they naturally lose teachers that used to be around them. For most people, they seem to find a new circle to share life with. It may be college roommates or friends at work or church or clubs, but they do find people to be with and share things with.

It's not quite the same for those who have a significant disability or emotional issue in their life. They may not be physically or mentally able to go off to college. Or their behavior may prevent them from maintaining relationships. Because of these limitations, they ultimately become more isolated. Their previous friends and acquaintances have 'moved on' and are no longer able to (or in some cases no longer willing to) keep in contact with the person with a significant need.

I've watched a number of people who were a part of a close knit group like a sports team or a church group or a club who have not been able to continue on to college or work or the military who have watched most of the friends in those groups move on. They are unable to keep up or be a part of this next phase of life so they become isolated. Others merely become isolated because they are no longer eligible to be a part of the group they were a part of for 4 or 5 years and they can't go to the events any longer.

This is truly a sad phenomenon and even more so because I don't see an answer for how to stop it. It's natural in life to "move on." You can't really point to some one or some thing and say "HEY! That's the reason these people become isolated." If this didn't happen, or that person did this, then this issue would go away. In other words, no one is to blame, but it continues to be a problem for those with significant needs.

I've watched some families try to overcome it by helping their child find new groups and/or creating new groups with old friends. I've watched some individuals merely drift off into isolation until no one knows where that person is any more.

My charge to you who read this is to look for ways to connect with people in your lives who have significant needs. Those needs can be a disability, the death of a spouse, divorce, or an emotional issue. The list is not exhaustive. Take the time to send a card, call someone, connect in a group, offer a hug or whatever you feel might help make that person's isolation a little less. It will make a world of difference for that person and will connect both of you in new and meaningful ways.

Living Vicariously

Hockey. It's in our blood in Minnesota. Many of us play it. A lot of us watch it.

My journey with the sport has been reinvigorated in recent days. Let me go back a few years to give some background.

I was 4 or 5 and was taking skating lessons. A monster the size of a bus drove onto the ice! I was petrified as I tried to move my little legs to get off the ice before it killed me. That's how I remember it anyway. I'm sure reality was a little less dramatic.

Fast forward about 5 years. I'm playing at the local park. Some older boys are playing hockey and I join them as a goalie. I can barely stand up so goalie suits me. A kid takes a shot. I fall and make the save with my knee. A kids think I should maybe try staying on my feet to make a save. I say I'm OK as I try to skate. Now I skate even worse than when I started.

Those two highlights of on-ice time are frozen in my memory.

Fast forward about 37 years. My six year old is on the ice and is in his second year of mites hockey. He is now playing goalie with all the paraphernalia required to protect his little body from the onslaught of the black disk. Not only is he skating better than I did when I "played," he's actually shown some potential according to a couple of dads/coaches that know way more about this than I do.

So I've found myself schlepping my son around from rink to rink to get his ice time. Some weeks he plays goalie. Others not. He likes goalie a little more, but loves the game. The other night it was a goalie clinic. He and some 30 odd goalies ranging in ages from 6 to 16 are learning things like: positioning, stick saves, the butterfly, post to post movement etc. So my dreams of being a goalie from days gone by are now transferred to my son.

Yes, I know living vicariously through children can be dangerous. They don't need the pressure to be what we wanted to be years ago. I've made a conscious decision not to put that pressure on my son and simply enjoy every moment he's on the ice. I'll take him as far as he wants to go, but when he's done, I'll hang it up with no skate laces attached.

Instead of merely living through him, I've learned that I can have some measure of joy on the frozen water. I've found a pair of skates that fit and are in pretty good shape. I've laced them more in the last month than I have in all the previous years of my life. I've played with my boys and have learned how to stop - well at least one direction any way. I've managed to play a pick up game with a few young boys (ones who can actually skate at my speed! Or is that the other way around?). I'm getting a chance at this age to do the things I wanted to do as a kid, but didn't have the courage or the desire to complete.

I'm invigorated by this new activity and am learning that there are second chances for things missed in years gone by. It should be obvious that serious organized hockey is not in my future, but for me I am living a dream.