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. 

Normal Child Syndrome

Awhile ago I posted a video about a woman who spoke about "glass children" on my facebook wall. Below is the video if you want to watch it. "Glass children", in this instance, are siblings of children with disabilities. The reference comes from the fact that these siblings often do not receive as much attention as their special needs brother or sister, and therefore sometimes feel as if their parents are looking through them. 

I used to call this same phenomenon "normal child syndrome." I have a slightly different definition for it, however. My definition would be "a sibling of a child with a disability who feels that because they are "normal" they must be the most amazing child ever." Not because their parents won't look at them. Mine worked hard to pay attention to me. No, because they feel a sense of extreme guilt that their sibling will never have the opportunities that they have. Their sibling will never reach the heights that the "normal" child could possibly reach and so if you don't reach those, you are failing. 

I think this is why my mom was constantly worried about how much I was socializing. I was (and still am somewhat) an introvert. I felt no need to constantly be with people, and honestly usually reached a threshold of socialization and then needed to be alone. I still struggle with the idea that this could be linked to the fact that I am a "carrier" of Fragile X. I don't know if I'll ever know if that's true, but it's what I felt.

It's only been as recently as meeting my now husband Ryan, that I've really been able to find my own voice. I wish I could express how much freedom he has give me from just somehow completely understanding where I'm coming from, and giving me the confidence to know that who I am is okay. 

That is the core of it. When you are a sibling of a child with a disability, you are constantly wondering if you are good enough. Am I normal enough? Am I excelling enough? Did I go to a good enough college that my sibling can't even dream about? Have I made enough friends? Do I wear the right things? Does me as a person measure up to what I think I should be? 

You wouldn't think a sibling with a disability would be hard to live up to. But let me tell you. My brother is the most compassionate and caring person EVER. If someone else got in trouble at school he would cry. He hates seeing other people hurt. Even if they deserve it. If we lived according to my brother's rules there would be no war, hate, crime, anything that we complain about every day. THAT is hard to live up to. I don't always forgive and I don't always forget, but my brother does. Every single time. 

So, no, I can't completely relate to the woman in this video. I don't think I have her full sense of anger. I didn't experience everything that she did. But I can relate to the idea of not feeling good enough. Of feeling, in a way, invisible unless you are doing something amazing. 

I don't know when I'll get to a point where I can talk about these issues like the woman above does, but I hope when I do, I don't feel angry or sad or depleted. I hope I feel empowered, and finally, maybe, at peace. 

Success and Failure

Sometimes life is hard. Sometimes you fail. Sometimes you make an embarrassing mistake. Sometimes you get asked to do something and later wonder if you should have handled it differently.

I can’t count the number of times Ryan and I have worried about our jobs. One of us will come home feeling like the very next day we could get drop kicked out of our buildings. It’s not that we don’t like our jobs. It’s that we like our jobs so much we are desperately afraid of failing.

I’ve been afraid of failing my whole life. What I’ve come to realize however, is that different people have different definitions of success and failure. Success for some means having a high up job and lots of money so your parents can brag about you to their friends. “Look how successful my child is, they have a Ferrari!” Success for others means following in someone’s footsteps. Taking over for someone they admire because of their deep respect for their work. For others, and I would say for me, success is feeling like your job means something. That somehow because of what you do, someone will be helped.

I crave little notes from our donors about how we’ve helped them. I watch and wait for someone to say something about the difference we are making in the community, and usually I don’t have to wait long. For me, I wish money would go away, and we could live in a Star Trek universe where a desire to do good and better ourselves has replaced our money. How great would that be?

We have restrictions on alcohol, drugs, and guns because they are deemed harmful. We have very few restrictions on money.  Money isn’t harmful. It makes the world go ‘round. At least that is what we tell ourselves.

Failure for some is not having enough money. “Enough” being a relative term based on previously mentioned expectations for success. Failure for others means settling for something they do not enjoy or doing the same thing your family has done for years, just because it was easy.

By American capitalist standards Ryan and I are doing well. We both have jobs, enough money for a two bedroom apartment near the city, and a cute little doggie. Why then do we still have feelings of inadequacy? Why do I lose sleep at night over my future? Maybe it’s societal pressure. Maybe it’s parental pressure. Maybe, just maybe, it’s all in our heads and if we just let it go and make opportunities happen when we need them, then we will be okay, or perhaps even better than okay. Maybe we will be happy.

The very purpose of spirituality is self-discipline. Rather than criticizing others, we should evaluate and criticize ourselves. Ask yourself, what am I doing about my anger, my attachment, my pride, my jealousy? These are the things we should check in our day to day lives.

-Dalai Lama

The very wonderful purpose of Buddhism is to limit attachments, especially material objects, in order to connect more closely with your spiritual self; your true self and essence in this case. The Dalai Lama is the leader of Tibetan Buddhism or “the Diamond vehicle.” For more on Tibetan Buddhism and the difference between it and other forms of Buddhism…I’m imagining you’ll just Wikipedia this, so here are some key words:

Mahayana Buddhism

Theravada Buddhism

Pureland Buddhism (this is weird, but growing, especially in China and Japan)

Until next time.

Keep calm and carry on.

41 degrees in February

The twin cities are under a warm spell. It's been great for commuting, walking Penny, and generally avoiding freezing misery. It hasn't been good for winter sports, or winter carnivale in downtown St. Paul. I have heard many a groan that Michigan has received more snow than here. 

So what has been going on in the world of Stephanie and Ryan? Well recently, thanks to a work trip for Ryan, we were able to visit my friend Jessica in New Orleans. Picture above, from left to right are Jessica's cousin, Ryan, and my friend Jessica. This is actually in St. Bernard parish where she works in a charter school. It was great to see outside of the city. We even got to see the ninth ward where Brad Pitt and Angelina Jolie are building crazy beautiful houses where there was so much destruction and death. 

Jessica seems to love it down there but I could never live in that area. There is too much to rebuild. While they sure know how to have fun down there, there is a certain lifestyle you have to get used to, and MSP has spoiled us horribly. I can't wait until it's really spring/summer here. Walking around the city is the best part of living here. 

Our little Penny is doing well. She has grown incredibly more comfortable around us, and is now "more like a dog" as Ryan says. I can't help thinking that she would do really great in a fenced in yard where she could chase the squirrels she's obsessed with. But the park behind us serves us very well. Speaking of which, she is sitting by the door so I think I will take her out. 

Until next time. 

Keep calm, and carry on. 

Penny for your thoughts

This is our dog Penny and she is our forever dog. Things to know about Penny: she is a mini-pinchser/dauschound mix (no I cannot spell either of those words). She LOVES other dogs, they are all her best friend and she must play with them. She also loves children. She isn't interested in toys unless other dogs or children are playing with them and she won't eat unless someone is home with her. 

In short she is a bit strange and is the first dog I have ever met that isn't motivated by food. In fact she will turn her head to food. We love our crazy ninja/food despising dog and so do the people in our building. They think she's adorable and that it's great she doesn't bark...ever...seriously....and when she does it sounds like she's afraid she's making too much noise. Instead she does these little whiny noises when she's sad because the toothless wonder chihuahua down the hall won't play with her. Imagine a tiny chihuahua with no teeth and a tongue hanging out the side of her mouth. Did I mention Penny loves ALL dogs. I think that dog is creepy and weird. But not Penny. That could be her new BEST FRIEND!!! AHHHH!!!!

Poor rejected Penny is now sitting next to me on the couch all sleepy like because that's another thing she won't do without someone around, sleep.

I should say that work is going a whole lot better, especially since I've been able to incorporate social media into my job. I am now the twitter master. Never thought I would be the ultimate authority on twitter but here I am. Of course it's not that hard in an organization who works with people who get annoyed by email. Not all of them are like that, but some, some think they are allergic to electricity. I kid you not. This donor gives us lots of money, but they are a little crazy. If they found out we had wifi they would disown us.

Ryan seems to still like his job. He said he had fun working on Indiana stuff today. I like how his projects always involve states. Because I was a scorer for a little while, I understand a lot of what goes on at his work. Therefore we sometimes get in these weird conversations where I'm pretty sure people are confused as to why, "New York is a pain" and "we hope we get Wyoming." States suddenly become a single entity that his company must interact with.

Because of Ryan's work, I am especially interested in NCLB (no child left behind) and what is going to happen with it. His work has literally changed my perspective on education. I thought I knew.....I really knew nothing. Testing is now a love/hate relationship for me, because now I have seen why it's good, but I also know why it's bad. So many necessary things are this way. Some states (and I know this for a fact) really could care less whether their kids are as smart as others. They don't want to compare, they just want their kids to be good enough for them. And sometimes, that means setting a painfully low bar for expectations. If they keep getting away with this, we are going to get nowhere. And that's my rant for the day.

Until next time. Keep calm, carry on.

Not So Lucky

You can't tell from this picture, but our foster dog Lucky had an issue with guys. 

Lucky would be fine when I was home. Below  is a picture of him all curled up in my lap. We knew he was much more cuddly with me, and we knew there was probably issues because when he had come in to the shelter he had bb gun pellets stuck in his leg. Now we, and the shelter, are guessing that a guy hit him with those pellets. Hence the freak out session when I stayed at an event at work, and Ryan was left alone with him for the first time. 

So we said goodbye to Lucky. We are fairly sure that we are going to wait on the dog issue until we have a house. We are too heartbroken and we are enjoying our freedom too much to attempt to get another dog. I would like to thank our friend Autumn for helping to give us some advice and help us make the right decision. You are our official dog guru. 

So how are we doing? Based on today I would give the following ratings to these 2 different areas in my life:

Love: 10

Work: 5

Work is not fun for me right now. As of today I am incredibly frustrated, and we'll see what happens. I am praying to Krishna that things get better. 

Ryan rates it this way:

Love:10

Work: 8

Work is going much better for Ryan. So even though I'm frustrated, the lesson is here is that love conquers all. I think....either way we are enjoying our life and feeling blessed to have what we do. I am honestly probably giving work a low rating based on a singular event and am therefore being unfair. We all have good days and bad days, and today just wasn't that great. 

I wish my writing was better. Take that last sentence. That is pitiful and wrong. However I am too tired to fix this entry and make it better. Hopefully as the year progresses, I will be able to make the steps towards being a better writer. It's my unofficial new years resolution. 

In the meantime. 

Keep calm, carry on.