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?

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 watched Bill Bennett on the Today Show this morning. He was being “interviewed” by Meredith Vieira. (I have the word interviewed in quotes because like most bullies, he tried to lead the interview and not let Meredith ask questions. He cut her off and tried to only get out the party line.) But one thing he said caught me (and Meredith Vieira,) off-guard. I couldn’t believe that the former Secretary of Education from 1985-1988 replied to Meredith’s statement that George Will and David Brooks have questioned Sarah Palin’s credentials and whether or not she is qualified to be Vice President. He dismissed this by saying that “Well, they are intellectuals…” and the tone that he used sent the message that he thought this was a bad thing. When Meredith called him on it he backtracked and said that he was an intellectual himself and that he had a PhD. But it was too late, it was clear to me right away even before Meredith had a chance to call him on it that he had let his true colors show. How sad that a man who oversaw our nation’s education system would call someone an “intellectual” as an insult to try to diminish their very legitimate concerns.

Anna started preschool yesterday.  I was probably more nervous than she was!  My stomach was in knots all day long.  We could stay with the kids on the first day, and I stayed for about 30 minutes, and Anna sent me home!  I was so proud of her.  I really thought she would want me to stay the whole time, because she tends to be really nervous around other kids.  But all the other moms were gone, so she told me I could go, too.  However, I wish I’d stayed.  When I came to pick her up, the teacher came out and asked me if she knows how to go down stairs.  Of course she does!  I guess they were coming in from outside, and then stairs are really steep.  Anna got scared and started to crawl down backwards.  (She is only 3 1/2 years old.)  The teacher ridiculed her by saying that crawling is for babies!  That is the wrong thing to say to Anna!  She exploded at the teacher and shouted, “I am not a baby!”  Then she started crying.  Good for her!  I am glad she stuck up for herself!  What a rude thing to say to a kid who is obviously scared!  Then the teacher told her not to cry.  I put her in this preschool because it is supposed to be a Montessori school.  I don’t remember reading anything about ridiculing kids for discipline in the Montessori method!  We will see if things get better, but if they don’t I am for sure pulling her out.  I don’t want to teach her to run away when you don’t get along with someone, but I don’t want her to hate school, either.

I asked her what her favorite part of school was and she said, “Snack time.”  Hmm, me too!

Emily had tubes put into her ears last Monday, and her hearing has been improving all week. She had fluid in her middle ears that was causing a 30 decibel hearing loss. In just one week we are already noticing a difference. She will turn when I call her name much more often now. Also, she has improved the enunciation of some of her words. She used to say, “aauugh duh,” for “all done.” Now, she says, “all duh,” which is a great improvement for one week. She noticed that she wasn’t saying the “L” in “all”. Another improvement has been in the word “more.” She used to say, “mmmo,” but now she says “mmmooorrree,” really drawing it out. She is getting all of the sounds in the word, though! Emily’s new word this week is “roll,” which she pronounces “rrrrooolllll,” again, really drawing it out while she rolls her hands for patty cake.

The interesting thing as a music teacher, is that all of these words have a melody in the way she says them. She copies our inflection and our pitch perfectly. We say “all done,” in a sol-mi pattern, and we say both “more,” and “roll,” in a sliding scale from low to high. I have to admit that we did not do this on purpose, but upon reflection, I definitely think that we should have! There are many studies that show that kids (and adults,) learn rote facts more quickly when they are put to music. (For example, the ABC song.) From our experience with Emily, it appears that this can be used for learning to speak as well.

I have been thinking a lot lately about education for both my girls, but for Emily in particular. It seems like it keeps coming up in conversations, and I get all upset about the situation. I feel like life is pulling me to take action. Here’s the issue. Bob and I both went to catholic schools from grade one-college. (Actually, the same catholic schools, but that is a story for another day…) Now, we are both very liberal on most issues, and the Catholic Church can hardly be defined as liberal these days, but strangely, we both remember a pretty liberal education. I guess the 70’s affected even the catholic schools! We really want a spiritual environment for our girls in their school. The most important thing is an environment where it is open and normal to pray and discuss God. But here’s the rub, Emily isn’t welcome in the catholic schools!!!!!! Yes, you read that correctly, the church that tells you to respect life will not support you or your child once you have the child with a disability! (Did you know that approximately 85% of people who find out they are having a child with Down syndrome have an abortion?) So, how do we handle this situation? Do we roll over and let the status quo be? I really don’t know. I have read about a wonderful program in Pittsburgh called the St. Anthony schools program which partners up with Duquense University. I wish our local catholic schools offered something like this! I am thinking of talking to the principal to see if they are willing to implement anything like this. I talked to the administrative assistant, and was basically told that they didn’t have the money or the space. (Imagine saying that to Jesus’ face if it was HIS child with Down syndrome, Oh, wait, it IS God’s child we are talking about, we are ALL God’s children!) I am going to offer to teach there for free if they will offer special ed. That will take away the money excuse. Now, we just have to see if they really want their school to be inclusive like their motto says, or if it is all talk. If anyone out there has faced similar issues, please let me know how you or your school handled it!

The Leader of the Band by Dan Fogelberg

An only child alone and wild
A cabinet maker’s son.
His hands were meant for different work
And his heart was known to none.

He left his home and went his lone
And solitary way. And he gave to me
A gift I know I never can repay.

A quiet man of music denied a simpler fate.
He tried to be a soldier once but his music wouldn’t wait.
He earned his love through discipline
A thundering, velvet hand.
His gentle means of sculpting souls
Took me years to understand.

The leader of the band is tired and his eyes are growing old.
But his blood runs through my instrument
And his song is in my soul.

My life has been a poor attempt to imitate the man.
I’m just a living legacy to the leader of the band.

I heard this song tonight when I was shopping. It just brought back a flood of memories. I actually had to duck into an empty aisle because I started crying. This song was popular when I was in High School. (Did I just date myself?) We did a fund raiser for the Music Department on Valentine’s Day where we did singing telegrams. We decided to sing this song for our Band Director, Mr. E. I remember that it touched him so much that he cried. It felt nice to do something for him to show him how much he meant to us. He was really my Father figure. My own father was so disappointing. My dad was old-school, German-catholic, strict, and emotionally abusive. (And sometimes physically abusive.) I don’t remember a time when I didn’t dislike him. (I know that’s a double negative, but I am consciously trying not to use the word “hate.”) Mr. E. was really a role-model and mentor in the best sense. He showed us that being a good citizen was what was most important. Of course, the music was always important, too, but what I really learned was how to be kind, caring, and humble, and still have fun. Mr. E. has a wonderful sense of humor, always laughing and telling jokes. Anytime he was conducting and there was a miscommunication, he would take responsibility. He’d say, “Sorry, That was my fault. I didn’t cue you in correctly.” Or something like that. That was the first time I heard an adult man say “sorry,” to me. I know that sounds crazy, but it’s true. I remember thinking how odd it was that he would apologize to the band when nine times out of ten it was our fault. But it really went a long way for me to learn the proper way to treat others. He also would always agree to take the band anywhere someone needed us. We would play for the town’s annual celebration when the other high schools in town wouldn’t play because it was summer. We played for the Fourth of July kiddie’s parade, the other high school’s homecoming parades, we played for President Reagan at the airport, and we even put together a small dixieland band for the interment of a veteran who loved dixieland music. (His widow was so pleased.) Now, however, my favorite memory is playing for the opening ceremonies of the Special Olympics in our town. I did that many times and I am so pleased that I have that memory now. I hope that Emily will have the opportunity to participate in the Special Olympics when she is older, and I hope that there are some high school kids who will play the National Anthem and Also Sprach Zarathustra (the theme to 2001: A Space Odyssey) for her.

“He gave to me a gift I know I never can repay.”

“His gentle means of sculpting souls took me years to understand.”

“His blood runs through my instrument, and his song is in my soul.”

“My life has been a poor attempt to imitate the man. I’m just a living legacy to the leader of the band.”

I hope that Mr. E. knows that every kind thing I did for my kids as a Music Teacher was inspired by him, and through that he is responsible for helping the thousands of kids that I taught. I pray that God continues to bless Mr. E. and his family, and that the love that he sent to the universe through his kindness and good works rebounds upon him a thousandfold.

We went to a very nice party for the children enrolled in the Early Childhood Special Education Program here in town and their families. I was so surprised at how many people were there. It was a really nice event and I wanted to put out a public Thank You to the teachers and staff. There were about ten classrooms filled with activity centers. Frosty the Snowman gave the children books donated by the Jaycees. It was so nice to see everyone enjoying their children, and the teachers enjoying our kids, too. When I go to the local Down Syndrome Support Group, so many of the parents are negative and down on the teachers and the school district. I know that the meeting is their place to “vent,” but it has been hard for me to listen to the negativity. We were actually told not to get our daughter any extra help when she is in school, because then the district would not do all they needed to do to help her. Are you kidding? I will do WHATEVER it takes to help my daughter. If she needs extra help after school, she will get it. She will not be a pawn in the I.E.P. wars. I will never forget what a professor once told our class in my Master’s program. He lived in St. Paul and his children attended St. Paul Public Schools. When someone asked him why he didn’t send his kids to private schools, he said that he and his wife, (also a professor,) felt that they were their children’s first teachers, and that they were responsible for making sure that their children were learning what they should be learning, even if that meant supplementing their education. They felt the diversity of students in the public schools was a hugely important factor in their children’s education. I know that the day might come when I have to stand up to the district to get my daughter what she needs, but I will remain grateful for the talented and committed teachers who devote their careers to helping our kids.