The Lucky Pumpkin

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.

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?

Right now I am feeling very defeated.  The girls have been sick recently, which means that Emily has at best, stagnated in her progress.  She isn’t interested in practicing walking when she doesn’t feel well.  She used to know her colors, and now, she is getting them wrong half the time, and to make matters worse, she isn’t eating very well.  I have been worried about her eating for a long time, but the school district refuses to giver her O-T help.  At best, we get a bunch of info given to us verbally in a short amount of time, and I am lucky if I remember half of it, let alone implementing it with any success!  So far, the strategies given to us have not worked.  I am introducing a new food at every meal for a week.  (The same food every meal for a week.)  I am using black beans because Emily doesn’t get any protein except from yogurt or milk.  Anna loves black beans, so I thought this would be a good place to start.  She just looks at me like I’m crazy, and ignores them.  The other strategy was to put something on a saltine cracker just a dab in the middle, because she loves crackers.  Well, the first time, she ignored it, but eventually ate the cracker with a little bit of cheese whiz on it.  Today, she boycotted the cracker.  When I look at her progress today, I think that she was better off many months ago.  I don’t know what is going on.  I hate the feeding issue, because kids use that as control, and I don’t want to get into a battle over eating, but, she needs to have a balanced diet, too!  Oh, and she has started rocking on her hands and knees.  I don’t know if it is stimming or not, but I worry about that, too.  The only good thing right now is her speech, which is blossoming.  She will imitate anything we say, or at least try to imitate it.  And, the fact that she is such a sweet, gentle, loving child.  That does mean a lot to me.  I just hope we can get out of this cycle, and get our Emily back!

Just when you think you have it all under control, a situation arises that shows you that you are not as “together” as you thought. I was feeling so good about how I have been handling Emily having Down syndrome. I hadn’t cried in ages, and life was rolling along as “normal” as can be when you have your two-year-old in speech and physical therapy, and has had a teacher since birth. I have even been helping other families with children who have Down syndrome. I was proud of my coping skills.

Then we decided to look into selling our home. With so many good deals out there, we thought we could get a smaller house that still has everything we want in a house, and put all of the money we’d save into the girls’ future. (Of course, that hinged on us being able to sell this house for not too great of a loss.) So, we had the realtor over to assess what our house is worth. She was asking us all about why we would leave such a nice house. I was holding Emily at the time, and I said that we wanted to put all of the savings into Emily’s future. Anna was right there, so I added, “and Anna’s future, too, but Anna will be able to take care of herself someday, and Emily might not…” I couldn’t finish that sentence. I started crying. (I am crying just writing this!) I think it is just so hard to hear myself say it out loud, especially to an acquaintance as opposed to saying it to Bob, or a mother of a child with a disability (who make up most of my friends, now.) Maybe it is also because Emily is getting to be such a cutie-pie with a real personality. She is not a baby anymore, I can see how she is becoming such a sweet little girl, and her future is easier to imagine. Clearly, I have more work to do to come to terms with everything. Funny thing is, I really felt at peace with everything… Such is life!

Long story short, we decided to stay put in our house. The market is too scary right now.

Emily updates: she is almost walking! She just turned two. She is beautiful! She FINALLY has a mouth full of teeth. (Not all of them, but most are there.) Her speech is “blossoming” according to her teacher. She is so sweet and loving. She loves to give her dolls and stuffed animals a big kiss. She blows kisses to everyone. If she hurts herself, she gives herself a big kiss, and seems to be all better. She adores her sister, calling her Nana. She is a huge blessing, and one of my most important teachers.

Emily is on the cover of the Down Syndrome Association of Minnesota’s 2009 calendar! The picture was taken when she was 6 months old, and she is 20 months old now, but it still looks a lot like her. Check out the little cutie here http://www.dsamn.org/calendars

The Down Syndrome Association of MN, (DSAMN,) distributes information to new parents and grandparents, and they also give information to ob/gyns to help them see the beauty and value in the lives of people with Down syndrome. If this is important to you, consider buying a calendar. It is a fund raiser for the DSAMN, and I am sure the money will be put to a good use.

Phrasing. Musicians know all about it. There is a proper place to breathe when singing or playing an instrument to make the song flow nicely. If you phrase the song incorrectly, you can change the intention that the composer had when writing the piece. Well, phrasing can be an issue with language, too. My know-it-all parents just don’t seem to get it. They keep saying, “Downs’ kids,” when referring to kids with Down syndrome. I have told them that this is offensive, but they just don’t seem to care. Well, tonight, they were the “experts” on Down syndrome because they went to a conference yesterday. (Never mind that I have been to conferences, too, all of a sudden, they know more than me and everyone else!) Well, they were telling me all the info on the phone. (When they are on the phone, they have to use speaker phone since they seem to be joined at the hip now, and they can’t let the other one out of their sight. This makes it so hard to have a conversation. They keep cutting me off and they do not listen to my replies. They really should be talking to the wall, it would be easier on all of us.) As they were imparting their “wisdom,” they kept saying, “Downs’ kids,” and finally I said that, “I hope that you didn’t say that to the parents there. People in the Down syndrome community find that term offensive.” My mom just went off on a rant and really laid into me. She told me that, “All of the people at the conference said “Downs’ kids” .” I tried to explain my side, but they weren’t listening. So, I sent this email. It really explains my view of how the way you phrase something can show your intent.

Hi Mom and Dad,

First, I want to say that I am glad you went to the conference. It’s great for Emily to have everyone learning as much as we can so we can help her as much as possible.

Second, I have been thinking about what we talked about not referring to children with Down syndrome as “Downs’ kids,” and that I might not have expressed myself clearly. It is hard to hear each other well when we are on speaker phone, and sometimes things get lost in the conversation. When I said that, “People in the Down syndrome community do not like that phrase,” I should have said the I do not like that phrase. (I assumed that you would know that because as Emily’s mother, I consider myself a part of the Down syndrome community.) I know that you do not mean anything bad when you say “Downs’ kids,” but you should understand that it is offensive to many people, myself included. I find it hard to believe that the parents in the Mile-High Down syndrome group would call their kids “Downs’ kids,” although it is possible that you found one or two who do.

Let me tell you again why it is offensive. When you say, “Downs’ kid,” you are identifying the child by the disability. He or she is first and foremost a child, and should be seen as a unique individual who happens to have Down syndrome. If you say, “The child with Down syndrome,” then you are stating with your words that you see him or her as a person first. This is a huge struggle for people with Down syndrome because many people view them as being all the same. (People say that, “They are all so happy,” as an example. This is not true, because the rate of depression among adults with Down syndrome is very high.)

Would you have let my grandparents call me, “That fat girl?” when I was growing up? Even though it was true that I needed to lose weight, I’ll bet you would have found that offensive. Ask yourself why. Probably because calling me that reduces my worth to just my weight, and you knew that there was so much more to me than that one characteristic. This is the way I feel about Emily. She is a fabulous kid who just happens to have Down syndrome. She deserves her family to see her as the multi-dimensional person that she is.

The other problem with saying, “Downs’ kids,” is that the term “Down syndrome,” does not have an “s” at the end of “Down.” You probably heard at the conference that it is a syndrome that was first identified by a British doctor whose last name was “Down,” so the right way to say it is “Down syndrome.”

Hope this helps you to understand where I was coming from a little bit better.

Mary

Just a quick Aaaauuuuuuugggggggghhhhhhh over the horrible things I just read. This is a horrible story from the Strib, (the Minneapolis Star-Tribune,) which tells of a 16 year old girl who lied to her boyfriend that a “mentally challenged” young man hit her. She egged her boyfriend and three of his friends to get the man, repeatedly beat and torture him, tie him to a tree, and leave him for dead. (I am not sure what “Mentally challenged” means, but of course, it is horrible even if he had a genius IQ!) http://www.startribune.com/local/south/31025409.html?elr=KArksUUUU

Then, I was reading the blog of a former colleague and she had a picture of herself and her daughter with the caption, “My hat looks so retarded in this picture.” What the #$@%? This person teaches music to close to 1,000 elementary kids weekly. If elementary teachers can’t model the correct language and respect to people with developmental disabilities, then they shouldn’t be teaching!

Jon Stewart, you jerk! I wrote a post supporting you during the writer’s strike, and have been a long-time fan. I know, you are in the comedy business, and you comedians always use that as an excuse to say hurtful things about groups of people, (”It’s just a joke, lighten up!”) But the segment John Olliver did on the “Stupic Vote,” where you compared uninformed voters who can screw up an election to “Fuc$tards,” was way over the line. I won’t even get into the “stupic vote” part, because first things first, I know you think you are so clever with your little contraction of “Fuc$ing” and “Retard,” but just like the movie Tropic Thunder, you are watched by so many young people. They repeat what you say on your show. Imagine if your young child had a developmental disability. Would you want him or her to be called a “fu@ktard?” Do you even care, or are you all about the ratings?

Finally, Oprah, Oprah, Oprah. Of all people, I expected you to support people with developmental disabilities, but you let a golden opportunity slip through your fingers when you had Ben Stiller on and you gave him a pass. You never once mentioned Tropic Thunder, or gave him a chance to apologize for promoting hate speech. In fact, you asked him if he was all right for the first time on your show at the end, putting your arm around him. Yes, the big bully needs protecting from THE OPRAH, not the voiceless people with developmental disabilities who now have to go to school and hear comments like, “Never go full retard,” thanks to the bully’s film. I am so disappointed in you!

I read this letter to the editor of the Minneapolis Star Tribune. www.startribune.com/opinion/commentary/30398869.html?page=2&c=y

I really liked the comment, “Choosing life is not about what happens in utero, but about what follows.” Yes, finally someone else gets it! This is what I wanted to say to the people who were picketing outside the Planned Parenthood building in Rochester the other day. I respect them and their right to protest, but like I said about the one-issue voters, it is so much more complicated than that! I do not believe in abortion, and I never have, but I recognize that it is a symptom of major society ills that most people who protest against abortions never acknowledge, let alone offer solutions for. I wanted to talk to those protesters who were spending so much time and energy trying to stop abortions to ask them to financially, emotionally, spiritually, and in every other way possible, support the baby that they are asking women to bring into the world for that baby’s whole life. If we as a society stopped the negative energy that goes into vilifying these often young, scared women who get abortions, and instead invested in real solutions for the poverty, lack of affordable upper education, lack of day care for the young mothers so they can go to school, and lack of affordable health care, I think the abortion rates would go down dramatically.

One thing I learned in fifteen years of teaching, is that you can’t make a person do anything. (Even torture often doesn’t work for military prisoners. If they can’t make a person do something, an abortion protester who tries to make a woman feel ashamed isn’t going to be able to make her stop, either.) You can only try to win people over to your way of thinking through love and respect. I think that choosing life is an excellent choice, so let’s try to vote for people who give us real solutions to the problems mentioned above that contribute to the despair that often leads to a woman having an abortion.

Also, in regards to the women who are aborting after they find out their child has Down syndrome, the only thing that will slow down this trend is to become an advocate for people with Down syndrome and get out the message that there is hope. The best thing that happened to us when Emily was born was to read the information packet given to us by the Down Syndrome Association of Minnesota. It was called the Down Comforter, and it had letters from other families, and pictures of these families doing normal things and having a great time with their kids. I can’t tell you the relief that literally flooded over me when I read these letters. I knew it would be all right. Things would be good, just different from what we imagined. (Now I know that they are even better than I imagined in many ways!)

How can we get the message out that people with Down syndrome are, “More Alike Than Different”? Write letters or emails to companies who hire people with Down syndrome. (Nordic Ware, Kowalski’s Market, Warners Stellian, in the Twin Cities, just to name a few.) Write to companies like Coca-cola who featured people with Down syndrome in their commercials. Support the ban on hate speech and movies like Tropic Thunder and write to the companies involved in making them to let them know why we as a society won’t tolerate hate language anymore. Donate money to your state or national Down syndrome group. (Minnesota’s group sends information to obstetricians so they can give it to newly diagnosed couples.)

By banding together with love and support of all women, we could dramatically reduce the number of abortions in this country and clean up our nasty inequities that often are the root cause of the problem in the first place.

I watched the debate last night hoping that I would like Sarah Palin. I have always been critical of people who are one-issue voters because they tend to over-simplify things, but I was trying to become one of them this time. I think that it would be wonderful for someone who has a special-needs child to be in a position of power and influence in Washington. So I was willing to overlook a lot last night, but she just doesn’t do it for me. First of all, her accent is annoying. I know that has nothing to do with the issues, but it is just hard to listen to her. Her folksy speech reminds me too much of W., and we all know where eight years of that lead us…

Who the hell is Joe six-pack? Yeah, I get it, but seriously? How condescending, to say that the “average Joe,” is someone who would be drinking a six-pack! I think of myself as an average American, and I don’t drink at all. (Not because I think people shouldn’t be able to drink if they want to, but I don’t like it myself.)

Secondly, she totally dodged the questions, and kept the conversation on her few talking points. I wanted to nudge Gwen Ifill to tell her to make Palin answer the questions that she asked. She even made the statement that she wasn’t going to answer the questions like the moderator would like, and later complained about the “filter” of the main-stream media. By that, I am assuming she means that they check what she says and makes sure that she is telling the truth about McCain’s record, etc. We need the media to check these things. They should be checking what both candidates say for accuracy, it is their job!

Thirdly, her lack of respect for history is scary! She stated that it doesn’t matter what caused global warming, what mattered was, yes, you guessed it, energy independence! (Of course, energy independence is important, but that was about all she could say last night, it was like Giuliani and 9/11.) Those who do not understand history are doomed to repeat it, everyone knows that! Also, it appears that she doesn’t know that the USA did not win the Viet-Nam war. She made the comment that, “And John McCain knows how to win a war!” Really? What war did he win? I am not downplaying his service to our country. Being a prisoner-of-war must be one of the worst things a person could go through, but neither McCain, nor any of our troops, won the Viet-Nam war!

The more I am exposed to her, the more I dislike her. I am very disappointed. But, the more I think about it, the more I realize that she probably wouldn’t be much of a help for special-needs children anyway. Her son is only about six months old, and her commitment to him and his care is not admirable. I can’t imagine agreeing to take on a Vice-Presidential run when Emily was so little, or even now that she is a year and a half. I am not anti-feminist, I strongly believe in women’s rights, but I do think that we can’t have it all at the same time. There is a time for focusing on your career, and a time to put the family first. When your child with Down syndrome is an infant, that is the time to put the family first. I am sorry, I know that is not a popular thing to say, but that is my belief. I know some women who work full-time outside the home when their children with Down syndrome are infants, and they do all right. But that is a normal, 40 hour a week job, not the type of commitment that it takes to run for Vice-President, which surely is at least 80 hours a week. Also, judging from her anti-government comments and her desire to cut services to the bone, I don’t see any evidence that she would support more government financing of special education, or services for developmentally disabled adults, either.

One positive thing I heard last night regarding education was Biden’s comment that the problem with No Child Left Behind was that they didn’t finance it! That is ONE of the problems with it, but that is a start that a senator is acknowledging that!

I came across this video on you tube. It was produced by Gigi’s playhouse, which is a social club of sorts in the Chicago area for people with Down syndrome. (There are two groups in the Twin Cities metro that I know of who are trying to do something similar here, one in the east metro, and one on the west side.) www.youtube.com/watch?v=t_0K-gPlyb0

I love this video. It really puts a face on the issue that I have seen referred to as “retard-gate ‘08,” which of course is the Tropic Thunder movie and it’s use of the word “retard” as an insult. If you read my post, “Letter to Oprah,” http://theluckypumpkin.com/?p=66 you know that I would love to see Ben Stiller look at a person with Down syndrome in the face and call him or her a “retard.”

I would like to make one more comment about this movie. Many people are defending it by basically saying that it is all right to use this hate-speech repeatedly in the movie because it is satire. Well, yes, I am sure that it is satire, but I am here to say that I have taught children for fifteen years, and I know that most of them do not understand satire. Also, make no mistake that in this day and age, with On-Demand and DVDs, many children will see this movie. (Not to mention the kids whose parents will let them see it in the theater and the pirated copies of movies that kids probably know how to download better than their parents.) Final thought: Don’t we as a society deserve better?

Two quotes that really struck home for me in this video are, “I am all my parents could ever wish for,” and “Sometimes the perfect person for you is the one you’d least expect.” This is exactly how I feel about Emily (and Anna, too.) Before Emily was born, I used to pray that she would be the right fit for our family. I was particularly sensitive because I have always had difficulties with my brother and I wanted a nice sibling relationship for my girls. Now that she is here and I know so much more about her personality, I can see how she is the perfect fit for us. God totally answered my prayers! I hope that everyone who reads this and Ben Stiller and his cohorts, too, have the joy of developing a close relationship with someone with Down syndrome. I truly think that it would change the world!