Do Not Underestimate Your Typical Child

After the Fragile X Conference in Miami was over, I saw many posts on facebook, blogs, emails, etc.ranging from deeply sad to incredibly optimistic. While mostly fun to read, some of them produced an unforeseen angry reaction from deep within me. Somewhere I had buried a deep frustration of what I will call "the journey of the parent" versus "the journey of the sibling." What do I mean? Take the following example.

I was sharing some of my frustration (with my mom) that sometimes reading the experiences of parents with younger children with Fragile X upset me, because many made it seem like people with older children just "don't understand." Somehow the older children are missing out on this "new age" of drugs and cures. Yeah. I heard those same things when my brother was young too. In fact I thought by the time I was older there would BE a cure.Wishful and slightly naive thinking on my part.

My mother, in her usual gentle way, pointed out that her views on my brother changed significantly from when he was young to when he was older. From everything to expectations on what he would learn to how he would act, my mother went through a deep transformation. And me? As a sibling? Well my journey was incredibly different.

I accepted my brother from the beginning. I didn't care if they found a cure. Okay that's not true. I wanted a cure for selfish reasons, so I could have kids without Fragile X. But I didn't want to cure my brother. I wanted him to be the same. Because I loved him and would do anything for him and if he was cured who would he be? Oh I can hear the screams from parents now. Please understand I'm trying to give you some perspective as a sibling. It's not that if there was a cure that I would deny my brother that chance, it's just that it was not important to me.

My journey involved making sure my brother was happy, that I took some pressure off my parents, and that I made sure to have time for my own life. I could have easily let my brother's situation consume my very existence, but luckily I escaped that. It doesn't mean I love him any less, it just means sometimes my support is a phone call or skype versus being around to take my brother putt putt golfing and to Applebees for a burger. For me, my brother is easy. I know what makes him happy, I know what he shouldn't eat, and I know what he wants to eat. I also understand that he is a complete teenager, and sometimes he will be moody and only want to talk to his girlfriend. I understand that underneath all those behaviors and anxiety, is a typical child trying to make his way. He is not a child to be coddled, he is my independent brother.

Do not underestimate how much your typical child will grow up. They will grow up so fast. Be so much wiser  than their peers. And they will have accepted their sibling and their situation LONG before a parent. It doesn't make it better or worse. The sibling is not therefore some grown adult at 12. No. They are still children. But their journey is very different than yours. Be honest. Be upfront. And for gods sake let them be a kid and have their own life. Feel free to step in, because acceptance can become all consuming. And then your typical child won't fulfill any of those crazy dreams you have for them. :)

Until next time. Keep calm, and carry on.

What I do - In case you were wondering

Many people have asked exactly what I do at my job as a Development Associate and honestly I often struggle to answer that question because as so often happens in a non=profit, I have multiple roles. So in an attempt to answer this questions, here is my slightly edited for privacy reasons, list of things I do. 

General Tasks

1.   Draft and edit correspondence to donors.

2.   Maintain files on individuals, foundations, service organizations and businesses.

3.   Maintain archived records for development department.

4.   Assist as needed with copy machine, postage machine, printers etc.

5.   Attend support staff team meetings and department meetings.

6.   Create money log with correct cost codes. Review and send out money log. Make copies of all donations to attach the money log and two copies of donations over $100 for filing.

7.   Provide administrative support to all members of development team.

a.    Track outside meetings and provide materials

b.    Set up meetings and reserve rooms

c.    Provide feedback and/or historical knowledge of donors when needed

8.   Assist with phone coverage when needed. 

9.   Work with volunteer on entering volunteer hours into CTK.

10.  Check obituaries in the Star Tribune and Pioneer Press against CTK and Donor Perfect. Update records as necessary and send appropriate notification emails.

Mailings

1.   Create and proof mailing lists.

2.   Arrange for volunteers as needed. Coordinate folding, stuffing, etc. (do paperwork and run to post office if a bulk mailing). If not a bulk mailing, obtain postage ahead of time.

3.   Mail thank you letters with appropriate enclosures.

DonorPerfect Reporting

1.   Create “batch log” of gifts during large campaigns for accounting.

2.   Create TY calling lists for team and volunteers. Enter contact notes for calls made.

3.   Do daily back-up of database and run utility programs as necessary.

4.   Stay current with database updates and programs.

5.   Obtain information on new clients and volunteers and update database.

6.   Use NCOA reports to update addresses in database and on mailing lists.

7.   Enter coding for mailings sent, events attended, contact notes etc.

8.   Prepare list of donors for Annual Report.

9.   Create monthly report (dashboard) of accounting (GL & cost center codes) donors, amounts.

10.    Enter each donation in database and make notes as necessary.

11.  Create board dashboard specifically on progress towards the $100,000 goal.

12.  Report on campaign and fundraising progress.

13.  Provide analysis and feedback on future actions.

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Communication Support

1.   Work with social media (twitter, facebook, linkedin, etc.) to promote fundraising campaigns and/or events.

2.   Keep e-newsletter email list current and up to date.

3.   Pull mailing list for “Caring Connections” newsletter.

4.   Work with communications and development to update and track content of giving page.

Events

1.   Attend and be available for all fund raising events.

2.   Create lists of event participants and monitor RSVP’s.

3.   Prepare event or meeting nametags.

4.   Maintain inventory of items and in-kind donations.

5.   Take down/send out/and re-install windows for engraving.

6.   Print any necessary programs, signage etc.

7.   Help set up/take down tables, signs, etc. as needed.

8.   After event enter all necessary information in database (contact notes, pledges, etc.)

9.   Prepare and send acknowledgments for gifts and/or thank you for coming note.

Misc. Fundraising

1.   Work with Cars for Courage by making sure forms are complete properly, title signed etc. Fax information to Courage Center, informing them if car can be driven or needs to be towed. If towed, mail paperwork and arrange for pickup driver to get keys. Enter donation in DonorPerfect—not as a gift but with a contact note and link to Courage Center. Maintain file of gift forms.

2.   Enter all United Way pledges in database – update pledge each time a payment is received. Send acknowledgement to donor (if known).

3.   Maintain a file of matching gifts from employers. Enter and acknowledge.

4.   Run a report of pledges outstanding and send appropriate pledge reminders to donors.

Life in the Cities or What City Has this Stuff?

Every municipal area has a water park. Below is a picture of Cascade Bay which is in a suburb of the cities called Eagan. There is one in Apple Valley, Bloomington, Minneapolis, and those are just the ones I know. Sure some are better than others, but they exist.

We have beautiful parks everywhere. Our favorite is Lake Harriet which has a walking and biking lane around the lake, a bandshell, a snack bar and boats you can take out for rent. There are also some gorgeous houses in the area and it's a great place to take your dog. 

There are beautiful cathedrals.....

And a beautiful zoo/conservatory/garden that only asks that you make a $2 donation if you visit.

As my mom said when she visited, "so this is what Detroit could be?"

God I hope so.

Keep calm, and carry on.

This ain't no disco, this ain't no country club either

"...all I wanna do is have a little fun before I die, a man said to me, out of nowhere..."

Yes I do have a song in my head.

There are way too many days that I wait for 4:30. 4:30 is when I leave work and sometimes I just hit a wall. That's the issue with office jobs. Sometime, somewhere, someone made up this rule that you HAD to be at work for 8 hours.

How productive are those 8 hours really? What if you get bored and spend at least 2 of those 8 hours on facebook, talking to coworkers about non-dairy recipes, or generally gossiping? What if really there are only 6 hours that are truly productive. Does that mean I have to be paid less? Just because I am efficient and rarely have work go into overtime I should be punished by taking away pay. Hours = pay. Unless you are salary of course.

It just really bugs me how our society is so focused on what is SUPPOSED to be instead of maybe what SHOULD be. Maybe we SHOULD consider making our hours more reasonable. Sometimes I will be working over 40 hours a week, sometimes I will be working around 30, altogether that should even out to how much you want to pay me. How much is my work worth to your organization? That is the real question. And if I'm not getting things in on time or I'm spending too much time on facebook then fire me.

Maybe we spend too much time worrying about our PTO and our sick days and our unexpected days off, and not enough time focusing on work and what we want out of our life. Sometimes these petty things get in the way.

And that's no way to live life.

Until next time.

Keep calm and carry on.

Fragile Xtiquette

I have two pictures of my brother on my cabinet at work. A few times people have stopped and asked me about the pictures and I will attempt to provide a short explanation of Fragile X and how it has affected my brother. Two of the more recent occurrences could not have been more different. They are a lesson in "what to say" and "what not to say."

First encounter:
Coworker: "Oh who is that in the picture?"
Me: "Oh that's my brother...blah blah blah...fragile x...blah blah blah"
Coworker: "I can tell you love him. That's so great. I'm glad he's doing so well."
The end.

This is what I would call a good conversation.

The second encounter:

Coworker: "Oh who is that in the picture?"
Me: "Oh that's my brother...blah blah blah...fragile x...blah blah blah"
Coworker: "They just want to be normal don't they."
Me: ......
Coworker: "Does your brother go to a program like Proact?"
Me: "What's Proact?"
Coworker: "Oh it's a place where people who can't do normal jobs and go and work doing small tasks."
Me: ".........................no, he has worked in several areas including a greenhouse, hotel and grocery store. In fact his older cousin has a steady job at a hospital and lives in an apartment with a roommate."
Coworker: "Oh, how great."
End.

This conversation makes me want to bang my head against the wall.  I know it comes from a place of ignorance and I try to remember that, however the "oh they just want to be normal" comment makes me fume.

Oh yes, they do. Don't we all just want to be normal. How quaint. Excuse me while I throw up.

If people are really curious why don't they say this:
"Oh I don't know much about that! Could you send me some information/explain that further" so I don't drive you insane?

The one area I can do nothing about is the child conversation. I wish I could just wear a sign:
 "IF YOU ASK ME ABOUT CHILDREN I MIGHT PUNCH YOU!"

I have made a choice to most likely not have biological children. It is my choice. I don't want to explain to you why I want to adopt, you should just respect it and move on. I know children are the light of the world and changed your life but I am going to have a different experience. Good for you, now leave me alone.

The only thing that is helping with this is reading adoption blogs. They are so helpful and also are great for venting purposes because adoptive parents often go through the same ridiculous questions as people who have children with disabilities. Basically, "oh that's different, how did that happen?"

It happened because nature always wins that's how it happened.

I'm sorry for the anger today. I just needed to get this out there. I hope it sparks conversation.

Until next time: Keep calm, and carry on.

Writing isn't a real degree

On Thursday some coworkers and I went out for a happy hour to belatedly celebrate my birthday, and to celebrate administrative professional week. Really it was just an excuse to drink because we’ve all been stressed. Anyone who works for a nonprofit will tell you that “campaign” and “annual report” season are stressful as heck.

We got on the topic of my time at Grand Valley State University and I was asked what I graduated with, and I said a degree in writing. My coworker gave me a look that said, “what the heck, what do you do with that?” I did my usual cut off before she could say anything and said, “at least it wasn’t liberal arts right?”

Really I was thinking a whole bunch of negative thoughts about myself because that’s what I do. The instant I think someone is judging me I feel the need to beat them to the punch and start judging myself, as if that will somehow offset what they are thinking. Can’t say it if I say it first right?

I am thinking of the song from Avenue Q. You can hear it here:

Writing isn’t useless. It’s fundamental. So many business people cannot write worth anything. That’s why communications people have jobs. To speak for business people who would say ridiculous jargon otherwise, same with politicians. I can honestly say that I write every day at my job. Even if it’s just a thank you note or a short email to our board, there is always something that needs a finer touch.

Maybe I’ve done everything all wrong. Maybe I shouldn’t have studied writing or not finished grad school or gone into nonprofit work. Maybe….but I wouldn’t have been happy. I wouldn’t be in Minnesota at a good job with good people to go out drinking with.

Maybe life is being judged by others for what you have or have not done.

Maybe I’m sick of being told that I should have done something different.

Maybe, as my boss says, I should handle my frustration by getting angry, rather than letting it drag me down. Get angry and change the world. That’s my motto for the day.

Until next time,

Keep calm and carry on. 

Top Gear and Video Games

As Ryan played Tiger Woods Golf version 300 (I have no idea which version it is, I just feel like there are a lot of them), I finally had control of the remote and what did I watch? Top Gear. Having recently found out that we actually get BBC America, our television viewing has changed drastically to daily marathons of Top Gear when we aren't walking the doggie, or making posts on my non-profit's twitter account. (https://twitter.com/#!/DARTS_MN ). 

Have I said that yet? I am the official twitter voice for my non-profit. Which considering that this is my first time even using twitter, is pretty amazing. 

Anyway, back to the subject at hand. I am currently watching a Porsche trying to beat a VW Beetle that is falling from the sky. This is the kind of amazing oddness that happens on Top Gear. And I just can't get enough. Especially when they keep showing the Bolivia episode, which is one of my all time favorites. 

We are currently under a Tornado Watch and Ryan just called to say he is on his way home from band practice, so I need to go get dinner ready. Next time I plan on talking about a new subject that has taken up prominence in my life, caregiving. Until next time. 

Keep Calm. 

Carry On.