The Lucky Pumpkin

Lately, I have been coming into contact with many different realtors.  I know that realtors are necessary, and there are many wonderful ones out there, but they have always come across as a little bit smarmy to me.  They have to butter up to people in order to get their business, so you never really know if they are just trying to have us keep them in our “rolodex,” or if their interest is genuine.  But the people I have been running across are just foolish in their interactions with others.  One lady is a mother of a girl who is in Anna’s dance class.  She is studying for her realtor’s license.  She appears to be from Florida, (She drives a car with Florida plates,) but I wouldn’t know for sure, she won’t talk to anyone.  How foolish is that?  You are going into a field that requires you to “schmooze” with others to get and keep contacts, and you ignore a bunch of potential customers?  Of course, all the people in the waiting area of the dance class are like that.  They refuse to talk to anyone else.  So I sit there with Emily and we get the evil eye because she is NOT quiet!  Nor should she be.  She isn’t loud enough to distract the dancers, but she does talk in a normal voice, which is too loud for the people in the lobby.  I have never felt more unwelcome, not even at Anna’s school, but I digress…

The other place I have met a foolish realtor is at Anna’s school!   A mother of two of her classmates is also a realtor.  I was very surprised to find that out today, because she is very rude and uppity to me.  I assumed it was because I dared to send Anna to her school without being in her “clique.”  Many of the mothers are like that.  But to treat someone poorly when they could be potential dollar signs to you is not good business.  I just think that there is no way I would ever use her if I wanted to buy or sell after the way she treats me.  Is it worth it to her to do that?  What does she get out of it?  The funny thing is that like everything to do with that school/church, if they really knew what we could do for them, they would be fawning all over us.  Instead, they see us as a headache because of Emily, and they shy away from us.  We don’t act like we could afford to be a help to them financially, but we definitely could.  They are too wrapped up in their social clubs and social standing having to do with which parents went to the school themselves.  Outsiders are really not welcome.  This is strange for us coming from Rochester, where almost everyone who lives there is not from there.  Considering that the population doubled in the last 30 years, you can see why.  This is a metro community, but is far enough out to still be “small-townish,” so we are dealing with some small-town issues.  As I have said before, we could help them not only with finances, but of course, with creating a true inclusive community, which is the only type that should be representing Jesus, in my opinion.  All I can say is, I am glad I am not a realtor.  When I do need one some day, I will choose one who is nice to me without knowing anything else about me, someone who is nice to everyone no matter where they are or what their circumstances are!

This saying used to make me upset.  I felt that it was an unfair statement.  Now, however, I think it just might be true.  We have been in our town for almost 2 years, and I have FINALLY been invited to the home of a native of our town.  Of course, it was Emily’s teacher, but still, it was a social event, and we really had a blast!  All of the other people I have befriended are not natives of our town.  I am not sure what this means, except that the natives have no interest in getting close to “newcomers.”  I am from Minnesota, but not from the twin cities area, and really didn’t know anyone from here when we moved here.  My neighbors are the worst.  They are actually really polite, in an almost painful way, because they never take it a step further.  And in case you are wondering, yes, we have invited them over to our house first.  It is most painful for Anna, because the kids in the neighborhood were all friends with each other first, and they just never think to include her in their play.  Luckily, they all live in the block behind us, so she doesn’t get to see it too much, but I often see them playing together when we are on walks.  I sometimes steer us in the other direction so she doesn’t get upset.  Yes, we have invited them to play at our house many times, including inviting them to our new play set in the backyard.  They are just  a lot like their parents, and they steer clear of newcomers.

I hope it has nothing to do with Emily.  I am going to believe that it doesn’t.  Where do you live again?

I have been thinking a lot lately about what it means to have Down syndrome. The obvious answer is that it is having an extra 21st chromosome, but how does that manifest in a person? I would think it would express itself the same in everyone, but that is not the case. Emily’s doctor mentioned once that it appears that different people are affected in different ways. For example, Emily is really talking well. At her two-year check-up, he said that she wouldn’t even qualify for speech if she didn’t have a trisomy 21 diagnosis, because she knew so many words, and had some two-word phrases that she was using appropriately. However, her walking has been literally slow and painful. She FINALLY started walking at almost 2 1/2. But, we had to get foot braces to stabilize her loose muscles. Her tone in her feet is really bad. Her right foot rolls in and out so much that it has to hurt her to walk when she is barefoot. I have noticed other kids with DS who appear to have much better muscle tone. I find that fascinating, that different people are affected in different ways by the same condition. Emily’s developmental physician, who specializes in developmental delays, told us that the only thing that she knows for sure is that if you have Down syndrome, you will be shorter than you would have been had you not had DS, and you will have some diminished cognitive abilities. To what extent this will happen is different in every person.

So, why is Emily flourishing (relatively speaking) in speech/communication, but lagging significantly in physical development? I would really love to have the answer. Is it environment? (We sing, read, sign a lot, but admittedly could be more physically active as a family.) Is it genetic (meaning in all the other genes, not related to the DS,) to value singing, talking, etc. more in our family? I do have professional musicians in my ancestry, and of course, my Irish relatives all have the gift of gab! It would be fascinating to do a study on the reaching of milestones across countries, and see if DS is expressed differently in other cultures. I read about a Japanese woman with DS, who got her degree in English Literature, and her librarian’s license. Her parents never told her she had DS until she was an adult. Did she flourish so much because she didn’t have negative expectations on her? I would like to know how other Japanese people with DS typically fare. She did say that she was often sick, and things were difficult, but her parents always supported her and never let her give up. Here is a link to her story. http://www.mct.ne.jp/users/ayaiwamo7/My%20speech%20in%20Singapole.htm

What started me thinking about all of this is that I have really been noticing that Emily needs at least three times the amount of wait time that I feel comfortable giving her. If I ask her, “What color is this?” about a picture in her book, I would normally wait no more than 5 seconds. But if I wait 15 seconds, or even more if necessary, she usually gets the answer right. At first I thought it was because she was waiting for me to give her the answer, and after figuring out that I wasn’t going to give it to her this time, she would finally say it. But, I am starting to think that she just needs that much time to retrieve the answer and say it. I have been wondering if that is the crux of what DS is educationally. That our kids just need a minimum of 3 times the amount of time to give the answer. I am not trying to trivialize things here, I just wonder if not giving enough “wait time” is not a HUGE part the struggles our kids face? This is complicated by the fact that sometimes she can get the answer right away, so I am not sure what is going on there. All I know is I am going to really slow down my interactions with her to allow her enough time to come up with the answer on her own. AND, I will need to remember that at IEP time, and to somehow really make sure the teachers know that about her.

Just a quick note to say that I have been getting a lot of spam comments lately.  I want you to know that if you left a comment that didn’t get published, that it is because sometimes it is really hard to tell which ones are legitimate.  There have been a few lately that were borderline, so I deleted them.  I don’t mind publishing views that are different than mine, as long as they are respectful in tone.

Also, I think it is obvious by my writing, but I wanted to say that I am NOT a writer by training, and I am not trying to be a professional writer.  I am just putting my feelings and experiences out there to help myself.  If anyone else is helped or entertained by reading this blog, that’s great!

On a walk this evening, we bumped into a neighbor we haven’t met yet. The conversation turned to schools, and she told me some bad things about the catholic school. She said that she pulled her kids years ago because of a poor principal. So I told her that I was considering the school, but probably won’t let Anna go there because they won’t take Emily. I also added, “Wouldn’t you think that would be the place above all others that WOULD teach a disabled child?” I was so surprised at her quick and decisive answer of, “No!” After putting down the school two minutes before, she went on and on about how they can’t afford to do it. Blah, blah, blah! That is code for, “This is the best excuse we have ever come up with! If we say it is finances, we can get away with being prejudiced without appearing that that is what we are doing!” Like I have said before, if there is a commitment, it WILL happen. I don’t want to be like “The Secret,” but it is true that if you believe it can happen, it will. Henry Ford said, “If you think you can, or you think you can’t, you’re right!”

I think that she represents the majority of people in the church. They feel that everyone should be like them, and to be different is a bad thing. Well guess what, folks? Emily is different. She has more compassion in her little finger than ten of you have combined. Her Down syndrome is a blessing, not something to be shoved away, shunted to the public schools. She deserves everything that every other child has, including opportunities at education. What surprised me the most, was that her attitude was basically that Emily didn’t deserve the education, that it would be a waste to send her there. The truth is she DOESN’T need them THEY NEED HER!!! She is more spiritual than any of them. I don’t worry about her spiritual education at all, I just want her to be in a loving community of people who openly and actively love God. I guess I am learning that the Catholic Church is NOT that community.

The saddest part for the church, is that this neighbor was talking about how much money the church was in the hole, and how bad things were. I told her that if they started a program, more families would come, and it would pay for itself, or even make money. She really wasn’t interested in that, just like most of the people in the church. (What’s that? I am proving that you really are just prejudiced and elitist? That it is not a money issue when I can show you that it would MAKE money?)

So, I ask myself, “Why am I even trying?” Is family tradition that powerful and important? Is the love and approval of my in-laws that important? (Or, in other words, is keeping my father-in-law from dying from disappointment that important?) My wise piano teacher, Sr. Aimee, said that to change the church, you must do it from the inside. True, they won’t change for outsiders, but I also think that the church won’t change until it is forced to change. (That means when it is losing enough money.) I don’t think that will happen because there is a sucker born everyday who is all too happy to buy into the zealous harshness of the church, and will be too happy to give their money to feel like they have an excuse for their hatred.

What’s next for us?  Episcopal Church, anyone?

I was going to write about Michael Jackson tonight, and as I was logging into my blog, I saw a comment by someone asking if I was going to blog about it. (Actually, I am wondering if it was a spam comment, some of those spammers are getting good at what they do.) Anyway, I might write about it later. In general, I think it is getting too much attention. But, I can’t really focus on that right now. I am thinking about the show that I have just got done watching on PBS. The show NOW interviewed Max Rameau, who is a community organizer in Dade County, Florida. His group is helping people to become squatters in foreclosed homes in the Miami area. (Miami was particularly hard-hit by the collapse in the housing market.) My heart feels so heavy that things in our country have gotten this bad. I am also feeling quite disappointed with Obama. I really did have high hopes for him, even if they were tempered by the fact that he had so little real experience. He sure spoke so much more eloquently than our last president, and that was so refreshing. So far, it seems like a lot of talk and no action. It also seems like the current administration is so concerned with pushing through universal coverage for health care that they leaped over what I feel must come first, HOUSING!!!! Seriously, what is more important to you, having a home for your family, or having insurance that you probably won’t be able to afford to pay for, anyway? How are you going to get to your doctor? In most areas of the country, there is not adequate public transportation, and certainly not for homeless people, that’s for sure. I think health care is very important, but housing has to supercede it.

What happened with the campaign promises? Max Rameau brought up a very good point; he said that the money that we, the taxpayer provided to bail-out the banks was to buy up the toxic assets from the bad mortgages, NOT to ALSO let the banks KEEP those houses! But that is what is happening. The banks got the bail-out money, AND they are keeping the deeds to those houses, AND they are evicting people. HUH?!?!?! If they “sell” the mortgages to us, the taxpayers and the government, they shouldn’t also get to keep those houses. It is like they are swindling us right in front of our eyes, and we are letting them! I thought that Obama was going to provide relief for people with the foreclosures. Very little has been done on this front, and what has been done, doesn’t appear to be working.

So, in Miami, people are breaking into empty, foreclosed homes. The police are reluctant to do anything about it. The people who break in have to pay the utilities. (Apparently, the utility company will turn on the power as long as someone pays, even if the home is in foreclosure.) You know, I am not a fan of breaking the law, but I have to say that it feels good to know that some people are fighting back. They screen people to make sure they are not breaking in to sell drugs, that they really are families whose only other option is the street, or living out of the car, or the shelter. The shelters do not have enough beds for all of the homeless people in Miami, so taking back the houses is what people feel they must do.

I am so horribly disappointed in our government right now. We spend billions, and billions, and billions killing people in other countries, and then we print some more money that we don’t have (they really are doing this, research it if you can stomach it, just printing money with no gold to back it, or any assets to back it, like you can just do that without ruining the value of the dollar…) and give it to the banks, but let the typical citizen drown because he or she made “bad choices,” by getting a mortgage they couldn’t afford. Yes, that did happen, and I really am all for personal responsibility, but I am also for CORPORATE RESPONSIBILITY, too! What’s good for the goose, is good for the gander. If you bail out the banks, you should also have to help the people of our country.

It appears that Obama was the biggest conservative of all. All he has done is help the banks and the big businesses. I guess that all that the rest of us can do is go break into an empty house and hope the police in our communities are as understanding as those in Miami.

I am wondering why someone from the Vatican would be reading my blog. You are welcome to read it, I just find it odd that instead of getting out to work with the poor, and the poor in spirit, there are people out there scouring the Internet looking for dissenting catholics. Well, if reading my blog gives you insight into why so many people are leaving the church, or the real problem, are not financially supporting it, then read on. I would think that it would be obvious why this is going on, but maybe I am giving the church hierarchy too much credit. Perhaps they really are that out of touch with reality.

Let me give you another thing to think about. Today, I talked to a mother of a child with a disability. This child, unlike Emily, does not have any visible characteristics of her disability. She told me that they go to our church, “When they go,” because they don’t go much anymore. When they are there, they feel unwelcome. (Remember the church in Todd county MN, that got a restraining order against a longtime parishioner and her 13 year old son with autism? It is like that, minus the restraining order.) She said, that people give her dirty looks, so she takes the kids in the back behind the glass, so they can’t hear them, and people still turn around to stare!

What’s up, church? Restraining orders against kids with disabilities, ostracizing families of kids with disabilities, not educating kids with disabilities in your schools or in CCD, what’s next? I will continue to write about your stunning hypocrisy and your veering off the path that Jesus set for us; “Let the children come to me,” until you get your house in order. Oh, and of course, I will not give you one penny until these issues are resolved!!!!!

I have been thinking about how facebook really keeps people connected even if it is mostly passive. I think it is so wonderful that my kids will probably never loose contact with their childhood friends the way most people I grew up with did. Even if you change your email address, you can still keep in contact through facebook. I have been connecting with childhood friends, and it is so much fun. I remember my mom telling me that I would probably not keep in contact with childhood friends because it is too hard to keep up with everyone, and people drift apart. I think that is true in the old days, but with the new technology, that will only happen if you want it to happen. How exciting!

I have been learning a lot about myself and my friends and acquaintances lately on facebook.  One interesting way I have learned about people is by the ads on the right side of the screen.  It will say something like, “Suzie is a fan of Chipoltle,” or “Matt uses this application,” etc.  It is a fun way to connect with and learn about your friends.  I have one friend, (actually a relative, not really a friend, but how do you say no to a friend request from a relative?) who is so into material things.  I keep getting these notices that she is a fan of the latest and hippest restaurants, jeans, jewelry, cars, etc.  I wonder if this is what fills her days, thinking about how she longs for these things?  Don’t get me wrong, I like nice things, too, but I don’t sit around all day and dwell on them!  Then, I get these other notices like, “Alice joined the Down syndrome recreation group,” or “Jody is a fan of the Leukemia society,” or things like that, and I realize that life really isn’t that fair.  Or course, I knew this before, but it is interesting how it is played out right before your eyes on facebook.  My relative who is so shallow, has 2 beautiful, healthy girls, and all she cares about is whether she can get the new Audi that she longs for.  My other friends are worrying about whether their child will fit in at school, or will she be accepted by the other kids, or will she be able to take care of herself when she is an adult?  The shallow one has what many of us want, and she will never realize how blessed she is.

Another funny thing I get are these updates like, “Amy is a fan of bubble-wrap.”  Too funny!  You can really see people’s personalities come out.  I hope that I come across in a favorable light to my facebook friends.  Oh well, take me as I am, flaws and all!  At least I know I am not shallow!

All right, last time, I dropped a bomb, and really aired all the dirty laundry.  (Well, almost all, someday I will write about my severe post-partum depression, and all that went along with it.  Actually, it was related to the molestation, so maybe that will come sooner than later.)  I have been thinking about how what I wrote would sound to a stranger, and I was thinking that some people would think that my accusation that my brother was himself a victim of abuse was not supported.  So, digging deep into my painful past…here goes!

I feel my brother was molested for many reasons.  He was in a group of boy scouts that included at least two of his friends who were molested by their scout leader.  He was in a group of “elite” Indian Dancers (yes, I know that the term should be “Native American,” but that is the name they used then, and it wasn’t meant to be derogatory.)  These dancers went to schools and other places and wore what they thought was an approximation of authentic costumes.  This included pants made out of deer skin with an open flap to cover the butt.  Underwear was not worn.  Also, no shirt.  When they danced, the butt flap would open.  Yes, I know that it sounds crazy that the boys were allowed to go like that.  The master manipulator, I mean scout master, was so good at selling a line to the parents about why the boys needed to dress like that, etc.  Anyway, my brother was a part of that group.  They also used to go on many overnight camping trips, including a two-week stay at the Cimmaron, New Mexico scout camp with just the leader and the boys.  We can guess what happened there… (My brother went two years in a row.  That is four weeks of unprotected access.)  During this time, I discovered a huge stash of inappropriate magazines in my brother’s room.  I did tell my parents, (I know, all the guys out there are screaming right now!)  and his excuse was that he found them in a tree house.  I never bought that line, and was surprised that my parents did.  (I guess they just wanted a reason to think everything was all right.)  Now that I am older, I really think that these mags were fed to him by the scout leader.  He probably also told him what excuse to give if he was ever caught.

Other reasons I feel he was molested include the fact that he abused me after the scout leader went to prison.  Did he miss it?  Probably.  And, the fact that he was the perfect target.  As was I.  Neither one of us had a loving father figure.  In fact, we had the polar opposite of a loving father figure.  We were both craving love and acceptance from a man.  The scout leader was my brother’s proxy father figure.  He would do anything for his acceptance.  I was lucky that I had a father figure in my band director, who was a wonderful man, and never said a mean word, let alone have any abusive behavior.  I was lucky that I chose a better person.  However, when my brother abused me, I did not have my band leader in my life, yet.  I was so beaten down, that when he started changing from someone who called me names all the time, and doing everything in his power to make my life miserable, I was totally sucked in.  I wanted love and acceptance from a family member.  He stopped torturing me, and started being someone I could turn to.  He offered solace when my parents had left me cowering in the corner.  (I mean this quite literally, and will write about this someday.  I used to go into the deepest corner of the closet in my room, and just be as quiet as possible, so I could avoid any fresh emotional wounds.)  He knew this about me, and used it to his advantage.  As an adult, I can see the moment he started manipulating me.  I really think he learned it from his abuser.  My parents are many things, but they don’t know how to manipulate like that.

Lastly, I just feel that it is the truth.  I know that some people won’t buy that reason, and that is all right.  I know what I know.  I have always been an empath.  I mean this quite literally.  I feel what other people feel.  I have learned to block it for the most part, but I can look at someone, and tell you what they are feeling.  Not why they are feeling it, or anything else, just what they are feeling.  If I am not protecting myself, I can feel it, too.  I know he was abused.  But, even if you think that is hogwash, I think I have given enough other reasons to support my claim.

More to come in the future…