Monday, December 29, 2008

I love a bargain!!!


I don't always shop wisely when I see something I think is a real deal. While shopping for groceries on Saturday I found these ice cream treats for 25 cents a box. That would be less than 5 cents per treat. I loaded up the deep freeze. I hope the name keeps me from eating too many!

What was your best bargain of the Holiday Season???

Thursday, December 25, 2008

Visit with Santa


We saw Santa at Jen and Shawn's house! Pretty exciting.

(This was last weekend. My posts are out of order...)

Christmas Pageant




The kids at church put on a pageant on Christmas Eve. Alex was a "star." He had one line and overcame big-time stage fright to deliver it perfectly. Joseph wasn't in the show, but enjoyed wearing the costume after it was all over! All too cute. Sorry the photos are not great. I took them with my phone.

Monday, December 22, 2008

Random thoughts

My posts about my children always seem to have a bittersweet tinge. Somehow, I rarely seem to be able to have a completely positive experience. I guess, try as I may, I'm still trying to make them into something they are not. And what they ARE is great. The problem is mine, not theirs.

I make sing language "I Love You" hand cookies by using a regular handprint cookie cutter and folding down two fingers. All the teachers loved them. I forgot to take photos for the blog. I found this cookie cutter, and it is pretty cute, too. But I like my more three-dimensional approach.

I floated the idea of going to the store to buy toys to give away to needy kids with Alex. He REALLY doesn't want to do that. I guess I won't force him. Had a talk with his Psychologist who has been doing some research about adoption. The psychologist is treating at least one other adopted child (from Russia) who exhibits some of the same behaviors as Alex's. I think the "hoarding" instinct is common among adopted kids. I guess I won't push a boy that never seems to get enough toys for himself at Christmas to go buy toys to give away....

Saturday, December 20, 2008

Alex's school party


I volunteered to help at Alex's school party on Friday. I read the story. It was fun, and interesting to see what goes on in the classroom. This photo shows one of the positive things from the party. The kids were paired at random. The pairs had to link arms, and use one right hand and one left hand to wrap a present. Everyone had fun. Alex's partner was good at telling him what to do, and cheated and used her right hand when he was too slow. They are trying to work a tape dispenser in the photo. They finished the task. Reading the story was fun, and Alex was happy that I was there.

The down side... The second game they played involved filling out a bingo sheet. You had to find someone in the room with glasses on, or with blond hair, or who had a cat, etc. etc. and have them sign your form. Once you had a bingo it was over. The room was chaos. All the kids running around a screaming at each other. Two kids didn't participate at all, and no one stepped forward to help them. The child with down syndrome, and you guessed it, Alex. The other kids just didn't notice them. No one came to ask Alex if he had a cat. No one asked if he had ever been to California... It was hard to watch. I'm sure this happens to every special needs child over and over again, in the best of schools. But it hurts Alex. Joseph doesn't care. Alex cares. We spend a lot of time and effort trying the teach Joseph social skills. Maybe he is better off not being very social. Craving social interaction gets Alex a world of hurt.

I'm helping with the sermon tomorrow

Seems pretty ironic to me. I don't ever think of myself as a leader at church. I attend, I participate, I struggle. I sent a copy of my post from Dec 2 (Grace) to our pastor. What was I thinking? I thought he would enjoy the story from the other side of the pew. Well, he immediately asked me to read this as part of a sermon, and tomorrow will be the day. I'll post his "frame" for my story--I have a draft, but not the final copy. I'll wait 'till tomorrow to get the final copy.

It is a bit scary, but also flattering. I'm still not sure I think others will be all that interested in the story, but I guess we will see. I've changed a few things, I guess I'll update the blog post with the new, improved version. And I'll let you know how it goes!

Friday, December 19, 2008

Well, maybe not that old

I used the "do it yourself" machine at the post office today.

Wednesday, December 17, 2008

I'm Old

Standing in line at the post office yesterday I noticed the following about the women who had packages to mail. For some reason, I didn't care what the men were doing. Guess I didn't relate to them. All the older women were in line waiting for the real people to weigh packages. All the young women, usually with two or three small children in tow, went to the self-service machine. Hmm. I waited for about 20 minutes for that real person at the counter. Hmmm... I'm not sure I'm comfortable with what that says about me. Next time, I'm going to the self-service machine...

I'm being crafty

In the best sense of the word.

Usually, I am tempted to spend time in December making cute food. One year it was chocolate dipped pretzels. One year it was pretty sugar cookies. My confections don't always turn out the way I want, and I eat too many. The idea is to have something special to give as a token gift. We don't exchange gifts with Dave's brother, and give his nieces token gifts... So, often I've done some baked good. This year I've been experimenting with crafty ornaments. I bought styrofoam balls (which are way more expensive than I thought they would be...) and planned to do folded star quilt ornaments. Those didn't work out at all. Mine looked terrible. So I started experimenting and googling and found many variations of a pattern for these very fancy balls:

Mine are not nearly as elaborate, nor do I use all the different materials the pattern calls for, but I think mine are pretty darn nice. Samples in the photos below:

Funky, traditional, and rustic. My favorite so far is the funky one. I had a lot of fun going through the fabric and trim at Joann this morning.



Wednesday, December 10, 2008

White Night

Somewhere I read the term "White Night" to refer to a sleepless night where worries and demons just get the better of you. I'm having one of those. They are rare for me now that I take an antidepressant. But I'm having one this morning. It is 4 am.

My worry this morning is not family. My anxiety is all about my professional life. It is the end of the term. I gave final exams the past two days. I graded yesterday and will grade more today. It has been a good term. I was told by a student that my class was his favorite of his college career so far. (He may have been trying to butter me up...) I've been told by a homesick international student that I'm the only faculty member she can talk with. I established a fragile rapport with a minority student who struggled in my class; he works very hard, but spins his wheels. I don't think I helped him learn the material, but I think I gave him a bit of confidence in himself. All I'm trying to do is teach music theory. It is rewarding that I seem to be able to teach more than that. I genuinely care about these young people.

So, perhaps, it is the transition from full speed teaching to several weeks of blissful time at home that has my mind working overtime.

I enjoy teaching. I love teaching. But I'm alone all day every day in my office. Grading papers. Preparing classes. Sending emails to graduate teaching assistants. I have no interaction with peers. I say hello in the hall to colleagues. We chat briefly. That is it. I can't find time for longer, more rewarding interactions. Thus, I find teaching very isolating. And teaching is not challenging. It is rewarding, but not challenging.

I am doing no administrative work this year. That has been my source of peer to peer interaction over the past 23 years. I find administrative work both rewarding and challenging.

I'm trying to work up a research agenda for the next year or two. I want to apply for a leave for next year. Research is even more isolating than teaching, and has always been my least favorite part of the academic life. It is an enormous challenge for me to stay motivated and focused on my own research. Clearly it is my weakest area as a professional, and the rewards have come rarely if at all.

Top all of this churning around in my brain with an email yesterday from a colleague that referred to the "new and very effective administration" in the School, where I was part of the old, and I guess ineffective administration. That statement reinforces the fact that my administrative career is over. My decision last summer to walk away from a stressful conflict still feels like the right one, but the long term consequences of my decision are distressing. I guess that is what has me up at 4 am. I'm still coming to terms with what the rest of my professional life will look like. The goals I had for the past 10 or 20 years have to be revised for the next 10.

Thanks for listening. I think I'll go play solitaire now and take my mind off this nonsense.

Tuesday, December 09, 2008

Santa




Alex has told me that Santa is not real--each of the past few years. He says it in such a way that I know he wants me to tell him that Santa IS real. I always tell him that the spirit of Santa is very, very real. We went to a potluck at church where we sing carols, and have a visit from Santa. One of my favorite events of the season. Fun was had by all. I notice how much I can start letting the boys do for themselves now. Each carried his own plate as we went through the food line. Joseph almost tipped his over, but I caught him just in time.

Tuesday, December 02, 2008

Grace

Last year on Christmas Eve I had an experience that a friend of mine called a "moment of grace." I'm inclined to agree with her. I've been mindful of that day and that moment as we approach Christmas this year. It is a long story, so settle in.

Christmas Eve is one of my favorite days, perhaps my very favorite day of the year. It isn't just the presents--it is going to church at night, candles, memories of caroling on Christmas Eve with my family, warm soup, cold, dark outside, warmth and light inside. I've tried hard, over the years, to lower my expectations of Christmas. I think I cried myself to sleep on many a Christmas Eve when I was a child because I was just plain exhausted, and it was all too much to bear. I know when I was in college I had a very hard time not crying in church when all the lights were out and we sang Silent Night. Okay, okay. I can hear you thinking--so why is this day your favorite? All you ever did was cry???!! (Okay, maybe you are not thinking that, but that is EXACTLY what Dave, my dear, literal husband, would say...)

I like to imagine that I'm more grown up than that now. That I live in the moment rather than dreaming of some ever so much more perfect future. (My Mother is a dreamer--there is always a better way to do everything--the right now is never quite good enough... I've tried hard not to follow in her footsteps in that. There is much to admire in my Mother, but being content in the here and now is not one of her strong suits.) So the Christmas season--with the waiting and the hoping--builds expectations for, if not a more perfect future, for a more perfect minute, day, evening, hour?

Last year, I spent Christmas Eve day with my two boys. Dave was at work all day. I had things to do, but also time to spend with the boys. I don't remember all of the details, but by the middle of the morning Alex had been so naughty I had declared that we were taking one of his presents and giving it to charity. I loaded the boys in the car, grabbed a not yet wrapped gift, and headed to the local charity drop box. I made Alex take the bag and put it in the collection bin. He saw the Pokemon toys in the bag. He wanted those toys. I can't say that his behavior improved as the day went on, but it didn't get any worse.

Joseph, on the other hand, had a full-blown meltdown during the afternoon. I left him alone in the basement for maybe half an hour and went to check on him when I started to hear noises I should not be hearing. He was trashing all the toys. Boxes of puzzles open and spilled on the floor. Books flung from shelves. Legos everywhere. Then the real fun started. I asked him to pick things up. I'm sure he sensed by my voice that he had me--I was totally in his control, right where he wanted me, so he laid down amid the mess and laughed. At this point, I screamed at him. Not one of my shining moments as a parent. One of my worst. I screamed loud enough that I could feel it in my throat. And, of course, that was even better for Joseph--he loved it, and he laughed even more. If my memory serves, at that point I went upstairs and put myself in timeout. Just took a half hour to not worry about how big a disaster the basement was, but stop myself from going too far. During that half hour I remembered all the behavior modification techniques we have practiced over and over and over with Joseph. I had to provide a reward for cleaning up that he wanted more than he wanted to see me lose it. So I went downstairs and told Joseph he could watch TV if he cleaned up the mess in the basement. Magic words. He got up and started putting things away--maybe not in the right places, but off the floor. I prompted him over and over again to continue so he could watch TV, and eventually he finished the job. Again, my memory is a bit fuzzy, but I think I let both boys watch TV for the rest of the day.

So much for my "favorite" day. I had a sore throat from screaming, Alex was pouting because he had lost a present, and both boys were parked in front of Sponge Bob.

But soon the afternoon was over. Dave was home. We drove to pick up Grandma and got ready for church. We were the family that was to light the Advent wreath at the Christmas Eve service. Yes, indeed God has quite a sense of humor. The spotlight was to be on us that evening. I was feeling like the worst possible parent, with the most dysfunctional family ever. Seems to me that special days--birthdays, holidays--are the times where having special needs children really kicks you in the teeth. But that isn’t true. Holidays and special days are just the times I turn into my mother, and want everything to be perfect instead of everything to be the way it really is. That has nothing at all to do with autism. That has everything to do with being human.

So, what does this have to do with grace? As we loaded ourselves into the van that evening, heading to church, I looked up and saw in the wood behind our home, a beautiful buck. We see deer all the time in our woods, but this was the first, and still the only buck I’ve ever seen on our property. My moment of grace. At that point, I let go. I let Christmas happen. I was in the moment, not in the future. Hope had come. The buck didn’t turn and run. Alex was able to see him, too. Grace. A moment of grace.

That evening in church, we walked together as a family with the flame to light the advent candles. Alex wanted to play with the lighter, so we let him carry it down the aisle. It was a big responsibility for a little boy who had had a rough day. A year later he still remembers. He told me just yesterday that he was nervous carrying the light. The buck had calmed me, and I was proud of my dysfunctional family.

But God doesn’t let us forget. I was reminded all through church that evening of my part in the day. My voice was gone, so I could not sing. My favorite part of Christmas Eve, and no sound would come from my still raw throat. Perhaps I was taught a gentle lesson. Perhaps I’ll be able to sing this Christmas Eve.

Sunday, November 30, 2008

Alex is a good helper

I use this forum as a sounding board--a place to vent a bit of my frustration--but today I must register what a great helper Alex was yesterday. We started the process of doing the Christmas decorations. He was excited and truly, truly, helpful. Last year decorating was a chore in which no one else showed much interest. This year, Alex begged me to put up the tree, and he helped haul boxes from the basement, helped hold parts of the tree as I put it together, helped unpack decorations, helped decorate, etc. etc. He was a trooper, and he was genuinely helpful. What a blessing!

I think the a big difference in Alex of late is directly related to me taking iron and having more energy. Instead of hearing myself say "maybe later," I hear myself say "yes!" Now, I don't want to heap guilt on myself and say I'm responsible for all of Alex's poor choices over the past six months, but a parent with energy is way better than a parent without, and parenting matters.

I am particularly proud of my mantle this year. I used real greens from a tree that blew over when the last blast of Ike hit central Ohio a few months back. I think it looks very nice... The overall effect (with the vacuum cleaner) is very cheery!


We have a cow in our yard

Thanks to my dear friend Lynn Anne, whose Christmas present this year is a lovely, light up cow. She doesn't photograph particularly well, but she stands at our front door, as Alex says "in the forest" (of fake light-up trees) and holds out a present to all that come to visit. Dave says she isn't nearly as tacky as he thought she would be from the picture on the box. I guess that is the hallmark of a good present... something someone would never buy for herself, but loves!

Tuesday, November 18, 2008

Looking Ahead

I want to prevent some of the problems we had in our household last Christmas where every sentence Alex spoke for a solid month started with "I want....." I also want to approach the holiday in a different spirit given that I feel economically pinched, and that our world is seeing tough times. Basically, I want to spend as much on giving to charity as I do giving to my family, and I want to find a way to involve Alex (and Joseph) in that. I know we can buy presents for needy children, and give food to the food pantry, but I fear that won't stop any of the "I want" mantra... I'm thinking of doing 25 really small gifts--dollar store gifts-- so each boy can open one a day, and then making sure we do something for someone else every single day. Maybe it will be sending a card or putting food in the food pantry basket at church, working on a homemade present for grandma, or buying toys for needy kids. Maybe if instead of an advent calendar with candy in it, if there is a present to open every day starting Dec. 1??? Or maybe not...

I'm putting all of the toy store ads and all of the catalogs that come in the mail straight into recycling before anyone gets a chance to open them, but I know the TV is full of ads...

So. I need advice? Anyone have any good ideas?

Monday, November 17, 2008

Sunday, November 16, 2008

I heart potatoes


I made stew in the crock pot today. As I was scrubbing potatoes I found this one. Isn't it bizarre??? I seems like I should sell it on ebay or something... but instead, I'll just take a picture, and post it on my blog.

Sunday, November 09, 2008

Uncle Joe and Alex go Fishing


This was a few months ago, but I forgot to post the photo. They didn't catch anything worth keeping, but they had a great time.
Uncle Joe gave Alex his first fishing rod for his birthday last year. Finally they had a chance to try it out!

Friday, November 07, 2008

From Jerry's blog

I know you can just click on "My Autistic Boy and other Adventures in Fatherhood" at left if you are interested--but this post is so good--I want to be sure you read it. This is the kind of thing that happens at Joseph's school. Not everyday--but it happens, and it is why we are so happy with the school.

Thursday, November 06, 2008

Kids At School
I drove by a school with a colleague today. She drove. I was looking out the window. The kids were playing all the games you expect of 10-12 yr. olds. In one corner was a boy off by himself about 10 yards from the crowd.

As the colleague was talking I watched him. His tick was small but telling. He was taking his left hand and wagging it back and forth like he was waving at the ground. It looked like with his right hand he was pressing his forefinger into his thumb.

He was mumbling to himself. He was skinny, a mop of semi curly brownish-blonde hair. He was doing 'tv talk', talking to himself.

Of course you see Demetrius juxta-posed. You can't help but to.

I shook my head like I was paying attention. I didn't want to look like I was being rude. Another boy ran over. Making fun? What would his body language show to me 30-50 yards away at at a stop light.

He grabs the autistic boy's hand. Pulls him over. And they throw the ball to him. He pays enough attention to make a bumbling catch. He lifts the ball over his head. They clap. He throws it back to a different boy. And he steps away and starts wagging the hand again.

Repeat, pull him back into the group.

Behind my sunglasses I tear up a bit. Not the right place and time to get really sentimental and misty about what I just saw.

But the sun did shine a bit brighter, it seemed to me, on a beautiful, crystal clear day in the Southeast.
Posted by Jerry at 16:54:04

Thursday, November 06, 2008

Iron

I'm supposed to be going to a work related conference in Nashville. A good six hour drive... I'm planning to visit my dear, dear friend Lynn Anne in Cincinnati tonight on the way, then leave early Friday morning to catch as many sessions as possible on Friday. Stay Friday and Saturday and come home Sunday. But I don't really want to go. I'm exhausted all the time. I only want to go because it would be a night or two away from home to rest. Perhaps I will. Perhaps I won't. I'm actually giving myself the option, tomorrow morning after staying at Lynn's of turning around and coming home. I guess as part of my quest to take better care of myself, I should skip the long drive, skip the boring conference papers, and spend Friday doing something really fun--like going to the outlet mall.

I saw the Dr. last week. For the third year in a row he told me I was anemic. I think I finally heard him. I've taken iron supplements for a few months after every visit, but never for the whole year. Perhaps my sheer exhaustion is the anemia. It is certainly worth being disciplined about taking iron three times a day if it really will help!

Dave and I talked for 30 seconds this morning-- over the din of two boys brushing teeth, not brushing teeth, jumping, grabbing, clinging, talking, complaining, and in general NOT doing what we wanted--about how we are in a marathon. Raising Joseph and Alex will take 20 plus years. We are maybe halfway. We must both pace ourselves so we have the mental and physical stamina to last. And when our boys are 20, our job will not be done, at least not with Joseph. Maybe not with Alex.

I'll let you know if I drive to Nashville. Right now, don't bet on it.

Wednesday, November 05, 2008

MLK

I found this on another blog this morning. It still brings tears to my eyes. The first time I heard it I was a junior or senior in high school, so 1972, 73? We watched a movie of the speech in a social studies class. I have very, very few clear memories of high school, yet that moment is etched in my memory.

I seem to be able to put aside a bit of my shell of cynicism this morning, and feel real hope for our country, and our world.

The full text of Dr. Martin Luther King’s “I Have a Dream” speech:

I am happy to join with you today in what will go down in history as the greatest demonstration for freedom in the history of our nation.

Five score years ago, a great American, in whose symbolic shadow we stand today, signed the Emancipation Proclamation. This momentous decree came as a great beacon light of hope to millions of Negro slaves who had been seared in the flames of withering injustice. It came as a joyous daybreak to end the long night of their captivity.

But one hundred years later, the Negro still is not free. One hundred years later, the life of the Negro is still sadly crippled by the manacles of segregation and the chains of discrimination. One hundred years later, the Negro lives on a lonely island of poverty in the midst of a vast ocean of material prosperity. One hundred years later, the Negro is still languishing in the corners of American society and finds himself an exile in his own land. So we have come here today to dramatize a shameful condition.

In a sense we have come to our nation's capital to cash a check. When the architects of our republic wrote the magnificent words of the Constitution and the Declaration of Independence, they were signing a promissory note to which every American was to fall heir. This note was a promise that all men, yes, black men as well as white men, would be guaranteed the unalienable rights of life, liberty, and the pursuit of happiness. It is obvious today that America has defaulted on this promissory note insofar as her citizens of color are concerned. Instead of honoring this sacred obligation, America has given the Negro people a bad check, a check which has come back marked "insufficient funds." But we refuse to believe that the bank of justice is bankrupt. We refuse to believe that there are insufficient funds in the great vaults of opportunity of this nation. So we have come to cash this check — a check that will give us upon demand the riches of freedom and the security of justice. We have also come to this hallowed spot to remind America of the fierce urgency of now. This is no time to engage in the luxury of cooling off or to take the tranquilizing drug of gradualism.

Now is the time to make real the promises of democracy. Now is the time to rise from the dark and desolate valley of segregation to the sunlit path of racial justice. Now is the time to lift our nation from the quick sands of racial injustice to the solid rock of brotherhood. Now is the time to make justice a reality for all of God's children.

It would be fatal for the nation to overlook the urgency of the moment. This sweltering summer of the Negro's legitimate discontent will not pass until there is an invigorating autumn of freedom and equality. Nineteen sixty-three is not an end, but a beginning. Those who hope that the Negro needed to blow off steam and will now be content will have a rude awakening if the nation returns to business as usual. There will be neither rest nor tranquility in America until the Negro is granted his citizenship rights. The whirlwinds of revolt will continue to shake the foundations of our nation until the bright day of justice emerges. But there is something that I must say to my people who stand on the warm threshold which leads into the palace of injustice. In the process of gaining our rightful place we must not be guilty of wrongful deeds. Let us not seek to satisfy our thirst for freedom by drinking from the cup of bitterness and hatred.

We must forever conduct our struggle on the high plane of dignity and discipline. We must not allow our creative protest to degenerate into physical violence. Again and again we must rise to the majestic heights of meeting physical force with soul force. The marvelous new militancy which has engulfed the Negro community must not lead us to a distrust of all white people, for many of our white brothers, as evidenced by their presence here today, have come to realize that their destiny is tied up with our destiny. They have come to realize that their freedom is inextricably bound to our freedom. We cannot walk alone.

As we walk, we must make the pledge that we shall always march ahead. We cannot turn back. There are those who are asking the devotees of civil rights, "When will you be satisfied?" We can never be satisfied as long as the Negro is the victim of the unspeakable horrors of police brutality. We can never be satisfied, as long as our bodies, heavy with the fatigue of travel, cannot gain lodging in the motels of the highways and the hotels of the cities. We cannot be satisfied as long as the Negro's basic mobility is from a smaller ghetto to a larger one. We can never be satisfied as long as our children are stripped of their selfhood and robbed of their dignity by signs stating "For Whites Only". We cannot be satisfied as long as a Negro in Mississippi cannot vote and a Negro in New York believes he has nothing for which to vote.

No, no, we are not satisfied, and we will not be satisfied until justice rolls down like waters and righteousness like a mighty stream. I am not unmindful that some of you have come here out of great trials and tribulations. Some of you have come fresh from narrow jail cells. Some of you have come from areas where your quest for freedom left you battered by the storms of persecution and staggered by the winds of police brutality. You have been the veterans of creative suffering. Continue to work with the faith that unearned suffering is redemptive.

Go back to Mississippi, go back to Alabama, go back to South Carolina, go back to Georgia, go back to Louisiana, go back to the slums and ghettos of our northern cities, knowing that somehow this situation can and will be changed. Let us not wallow in the valley of despair.

I say to you today, my friends, so even though we face the difficulties of today and tomorrow, I still have a dream. It is a dream deeply rooted in the American dream. I have a dream that one day this nation will rise up and live out the true meaning of its creed: "We hold these truths to be self-evident: that all men are created equal."

I have a dream that one day on the red hills of Georgia the sons of former slaves and the sons of former slave owners will be able to sit down together at the table of brotherhood.

I have a dream that one day even the state of Mississippi, a state sweltering with the
 heat of injustice, sweltering with the heat of oppression, will be transformed into an oasis of freedom and justice.

I have a dream that my four little children will one day live in a nation where they will not be judged by the color of their skin but by the content of their character.

I have a dream today.

I have a dream that one day, down in Alabama, with its vicious racists, with its governor having his lips dripping with the words of interposition and nullification; one day right there in Alabama, little black boys and black girls will be able to join hands with little white boys and white girls as sisters and brothers.

I have a dream today.

I have a dream that one day every valley shall be exalted, every hill and mountain shall be made low, the rough places will be made plain, and the crooked places will be made straight, and the glory of the Lord shall be revealed, and all flesh shall see it together.

This is our hope. This is the faith that I go back to the South with. With this faith we will be able to hew out of the mountain of despair a stone of hope. With this faith we will be able to transform the jangling discords of our nation into a beautiful symphony of brotherhood. With this faith we will be able to work together, to pray together, to struggle together, to go to jail together, to stand up for freedom together, knowing that we will be free one day.

This will be the day when all of God's children will be able to sing with a new meaning, "My country, 'tis of thee, sweet land of liberty, of thee I sing. Land where my fathers died, land of the pilgrim's pride, from every mountainside, let freedom ring."

And if America is to be a great nation this must become true. So let freedom ring from the prodigious hilltops of New Hampshire. Let freedom ring from the mighty mountains of New York. Let freedom ring from the heightening Alleghenies of Pennsylvania!

Let freedom ring from the snowcapped Rockies of Colorado!

Let freedom ring from the curvaceous slopes of California!

But not only that; let freedom ring from Stone Mountain of Georgia!

Let freedom ring from Lookout Mountain of Tennessee!

Let freedom ring from every hill and molehill of Mississippi. From every 
mountainside, let freedom ring.

And when this happens, when we allow freedom to ring, when we let it ring from every village and every hamlet, from every state and every city, we will be able to speed up that day when all of God's children, black men and white men, Jews and Gentiles, Protestants and Catholics, will be able to join hands and sing in the words of the old Negro spiritual, "Free at last! free at last! thank God Almighty, we are free at last!"


Friday, October 31, 2008

I VOTED

Just two hours in line. The boys don't have school on Tuesday, so I figured even a two hour wait today was easier than a 15 minute wait on Tuesday. And one never knows, here in battleground OHIO, the wait could be even longer on Tuesday--it was in 04.

The crowd was orderly, friendly, upbeat.

Thursday, October 30, 2008

Trick or Treat or Tantrum




Something as simple as Trick or Treat night is never easy in our house. Are these not two really really cute boys?? I sure think so. Do you notice the grumpy one on the left... He tantrumed for a good hour before time to go out. He tantrumed while we took pictures. He sassed. He mouthed off. He was told about ten times that if he didn't clean up his act he was not going trick or treating. Well... He was so naughty we finally had to make good on the threat. While I'm writing Dave and Joseph are out gathering treats. Alex is at home sniffling and getting ready for bed. Do you think he is trying to get my goat while I ignore him? "Next time you choose some one else..." I have a pretty good idea where this is going. "Next time I hope someone else picks me to be adopted." Yep... That is where I figured he was heading. I've known all along the day was coming when I was told that I wasn't his "real" mother. I've known that he would try to hurt me--because he can. And because that is all he thinks he has--power to hurt. Any power is power. Ah... the dear, sweet, oh so heartbreaking child. He misses Halloween Trick or Treat because he wants to hurt me. I hope and pray that someday he will learn that when he hurts us, he hurts himself even more... I think it is time to go try to give him a hug and a cuddle and settle him down a bit.

P.S.

After sniffling, and being mad at Daddy, and sniffling some more, and saying "I don't care about trick or treat." He said "Other kids at school can read big books and I can't." Ah... Maybe this isn't all about Trick or Treat. Maybe it isn't all about Daddy.

P.P.S.

Daddy calls. Does Alex want to go out now? Daddy will come back for him and let him go out for the second part of Trick or Treat. What a great Dad.

P.P.P.S.

Through all of this, our doorbell does not ring. We live in such an isolated place, no trick or treaters venture down our road.
I'm going to go take a shower in an empty house.

Wednesday, October 29, 2008

AutismCares.org

Whenever I watch the news coverage of natural disaster the following is always in my mind: Somewhere in that mess there is a Joseph, and a Mom trying to cope with the disaster and a Joseph... I'm usually so close to the edge that small things push me over or at least push me off balance. I'm afraid I'd crack if my only option were a Red Cross shelter with Joseph-- So, when this arrived in my inbox just now I thought--What a great, great program. Perhaps this will be the organization that gets all of my Christmas donations this year!

Mission
AutismCares is a consortium of leading autism organizations who have come together to support individuals with autism and their families during natural disasters and other catastrophic life events.

Purpose
AutismCares understand that families living with autism often need additional and specialized support in recovering from critical life-challenging events. Leading autism organizations, along with committed individuals in the community have come together to support families in their time of need.

How Does AutismCares Help Families?
AutismCares assists families who meet the eligibility criteria to cover costs associated with housing, automobile repair, insurance premiums, medical care, prescriptions, daycare, funeral expenses, and other items on a case-by-case basis. In most instances, payments are made directly to the vendor providing the services and not directly to the family. Assistance provided can not exceed $1,500 per family.

AutismCares supports families who meet the following criteria:
Have one or more children diagnosed with an autism spectrum diagnosis

Have a combined family income of less than $65,000

Have, within the previous 90 days:

Been the victim of a natural disaster-fire, floods, hurricanes, tornadoes, severe tropical storms or windstorms, and earthquakes

Suffered a death or critical illness or injury in the immediate nuclear family

Been the victim of a violent crime

Lost their home through foreclosure, or eviction

Primary income earner experienced termination of employment Lost their home through foreclosure, or eviction.

How Do I Apply?
Complete an online application

Applications are reviewed on a monthly basis. Deadline for an application is the 15th of the month. Applications received after the 15th of the month will be reviewed the following month

Families are notified of the results of their application by phone or e-mail.


Contact Info:autismcares@autismspeaks.org

Tuesday, October 28, 2008

Code for Race and Knowledge

Is it my imagination or is do we use "experience" as code for knowledge the same way we use "terrorist" or "Musilim" as code for black? As in "Palin doesn't have the experience to be VP," instead of "Palin doesn't know enough to be VP"... She has been a Governor, she has appropriate experience. She just doesn't demonstrate knowledge of the issues, or basic, thoughtful curiosity about the world... But to say that in the media or in a campaign would be too much in the same way that one doesn't say "Obama can't be President because he is black." So we lie and say he is a terrorist or a Muslim and she is inexperienced.

Sunday, October 26, 2008

A beautiful day




for a walk in the woods, a hay ride on a wagon pulled by a tractor, and a hot dog cooked over an open fire. I love autumn!

Friday, October 24, 2008

Sarah Palin Speech on Special Needs

I'm home this morning, nursing a sinus headache. I caught the live coverage of what the news channels call "Sarah Palin's first policy speech." She talked about the McCain Palin administration's plans for special needs children, teens and young adults. I was impressed. She said all the right things. She delivered a serious speech with a serious tone. She dropped all the snarky jabs at Obama. She was humble about how she is a rookie as a special needs parent. She stopped herself from calling autism a disease. She acknowledged that special needs are not just an issue of cute little kids. Adults are involved. She talked about providing full federal funding for IDEA. If Obama wins, she has done us a great service by delivering this speech, putting these issues out there as important enough to merit attention 12 days before an election. I don't think the speech will change votes... but this is the first time I've seen Sarah Palin do anything I found noteworthy.

Thursday, October 23, 2008

A bit too serious, perhaps, but still worth a watch

This was worth sharing, I thought--and he does shave his beard for the cause--  
See more Ron Howard videos at Funny or Die

Tuesday, October 21, 2008

Disability vs. Disease

There is a lot of discussion out in the blogisphere about Autism. Is it a disability or a disease? Is there a cure? Should we be looking for a cure for all disabilities, or celebrating our differences and learning to live with our disabilities? I think the obvious answer is that we do a combination of both. We do what we can to prevent and cure—be it diabetes, cancer, flu, mental illness, autism, or what ever. But we accept and deal with what we can’t cure or change… I think this is in part the difference between having a five-year-old diagnosed with an autism spectrum disorder and having an eleven-year-old with the same. Somewhere along the way you learn that the only hope isn’t a cure. There is great hope for a good life, or at least great hope for many, many good moments in life with autism. As the caregiver, the sibling, the parent, the teacher, or the relative of the autistic person, and as the autistic person… or the person with autism… however you want to say it.


The paragraph above is my reaction to the following:

This is a rush transcript from (Greta Van Susteren’s Fox News show) "On the Record," October 20, 2008. This copy may not be in its final form and may be updated.

  • VAN SUSTEREN: We had a rather sobering experience inside the children's hospital.
  • MCCAIN: We visited one of two pieces of equipment that can help diagnose autism at its early stages. And it is sobering. It's a very sobering experience because autism is a disease that is more and more prevalent each day in the United States, and there's no cure yet. We don't know what's causing it and what it is, and families are afflicted every day with it.
  • VAN SUSTEREN: And I suppose Governor Palin certainly said at the Republican national convention that, you know, special needs children is...
  • MCCAIN: Yes.
  • VAN SUSTEREN: ... is something that, you know, is one of her passions.
  • MCCAIN: Yes. She's -- as you know, they are parents of a special needs child. And we're so proud of them because their family is just such a lovely family anyway, but this special needs child has brought so much to them also.


There is a well-meaning sentiment here, and I want to relate to Cindy McCain because she is an adoptive mom, but I don't relate to her. Her words sound like sympathy, almost pity.   I've been thinking about this because of recent post and discussion on Autism Vox...  Some of the discussion is so tiresome I'm not even going to link to it.  You can find it by going to the blog on my blog roll.

Oh, and where have I been???   A piece of EQUIPMENT that can diagnose autism???? 
Is this a brain scan that finds markers?   Why do I think this is a very narrow part of the picture.

Friday, October 17, 2008

Old photos of Joseph

I've been trying to send some old photos of our Joseph to Jerry's friends who also have a Joseph, and both Josephs have a unique genetic disorder--not the same disorder--each has a genetic arrangement all his own.  The email version didn't work, so I thought I'd try the blog.  Since I didn't start blogging until Joseph was 8 or 9 I've never posted baby photos.  Getting these out reminded me of how far we have come--has it really only been eleven years!  These photos from 1997 seem like a lifetime ago. They are--Joseph's lifetime.   The first is from the hospital when J was born.  The second is a few days after the first clef lip surgery.  His lip is very swollen, but the lip is all sewn together.  As you can see from the third photo, the surgery did a good job!

I remember having the crib set up in the family room so the night nurses could move around, watch TV, get to the kitchen, etc.  Joseph couldn't be left alone--ever.  If the trach would plug, he would not be able to breath.  

A few years later, he looks pretty good, but still has the trach and the hearing aids.  I'm thinking this is 2000? Ah, memory lane.  

And all of this is hard for Alex.  He saw me looking through Joseph's baby photos and he wanted to see HIS baby photos.  We don't really have any.  We have a few from his foster family... and I need to go through that material to find those to put in an album for Alex, but two or three photos compared to two or three albums full of baby photos...  it is hard to explain.


 

Thursday, October 16, 2008

Autism and Down Syndrome

I was confused during the debate last night.  The candidates wanted to reference children with special needs--and McCain, I think, was trying to push Sarah Palin's expertise on the subject.  As far as I know, Palin's only relevant credential is as a brand new "Miracle League Mom."  Her 5 month old baby was born with Down Syndrome.   But McCain talked about her expertise with Autism???   Obama picked up on it and also made a brief comment about how autism is on the rise...    How did we get from Down Syndrome to Autism???   Is anyone else confused?   Does Down Syndrome not have a high enough profile and Autism is a more common disorder, thus talking sympathetically about Autism would reach more voters?  Do people not understand the difference?  I can believe that some people may be ignorant, but not educated people--not McCain or Obama?   Or, not if they are going to talk about it in a Presidential debate.  I found it distressing.  

Our Joseph has had a rough 24 hours.  Report from school yesterday was he fell apart at the end of the day.  He had a rough night.  No fever so I sent him to school this morning with instructions to call me if he had trouble.  I got the call at 1030.  I picked him up and took him straight to the Dr.  No ear infection.  Maybe a sinus infection.  Give it a day or two before starting antibiotics...  It is hard when he can't tell us what hurts, where, how much, how long, etc. etc. etc.   He just knows he doesn't feel well, so he acts out.  Welcome to the world of the Miracle League Moms.  


PS  I just read on Autism Vox that Palin has an autistic nephew.  Perhaps McCain could have made that clearer, if that is the source of her expertise.  As it was--it was just confusing...

Tuesday, October 14, 2008

Morning people

Most of my life I've been a morning person.  I jump out of bed ready to go.  Wide awake.  My best work gets done before noon.  Late afternoon is hard.

That is, most of my life.  Of late, I'm neither a morning person, or an evening person.  I crawl out of bed and straight to the coffee pot.  This morning was particularly hard?  I wonder if this is yet another symptom of not taking the best care of myself, or is this just age???  I thought I was supposed to need LESS sleep as I aged.

Whine, whine, whine...

Sunday, October 12, 2008

Under the Weather

We had a big weekend planned--and I started getting sick Friday night.  I managed to get through the whole day Saturday before crashing for the whole day Sunday.  Dave and I cleaned house Saturday morning and then took the boys to hear the OSU marching band before the game--  The band plays a free run through of the music for the game starting two hours before kickoff.  They draw probably 5,000 to hear the show.  I was supposed to be on the floor with the band, but we were late, and ended up in the stands.  Ironically, we sat next to an elderly man that had been born with a cleft lip and palate.  I had noticed how his profile resembled Joseph's, but thought he must have tooth issues because of age.  He stopped Dave as we were leaving to introduce himself and proudly told Dave his cleft had been "bilateral."  He was very interested in Joseph.  So, it ended up being a great blessing that we were late and NOT on the floor with the band.  

The boys went to a day camp on campus during the game.  It is held in the student rec center.  They swim, play, watch the game, and hang out with other kids.  It is easier than finding a sitter, and costs about the same.   I like including the boys in game day activities.  

The game itself was a snoozer, but we had tickets from a colleague who has GREAT seats.  We were surrounded by players' friends and family.  Row nine, 40 yard line.  Absolutely fascinating to sit that close.   It is a whole different experience than we have in our usual seats.

The cherry on top of the sundae for me Saturday was seeing two friends--one I used to work with that moved on to bigger and better things, and one from our old neighborhood.  I miss them both so much.  I must do a better job staying in touch.


Wednesday, October 08, 2008

okay, now what do I do???

Joseph's latest trick--Let's climb on top of Mom's pretty desk in the living room.  The one she keeps locked with all her most precious things safe behind the display glass.  Yes, I know I should be worried about my child, not my china, but REALLY!!!  I asked Dave about it--Dave says Joseph's been doing this for the past two weeks.  Where have I been?  Tonight, I just turned out the light and left him up there for awhile.  He hasn't figured out how to get down without help--and despite the risk of breaking bones and/or bone china, I left him up there for a few minutes...  When I went to help him down he seemed genuinely interested in getting his feet on the floor.  

Sally--Do you recognize the desk?  

Sunday, October 05, 2008

Surviving the Amazing Race

My closet obsession, over the past few years, has been reality TV. Survivor, the Amazing Race, and Big Brother are fun and entertaining. Yes, I know it is a waste of perfectly good time. I could be reading or sleeping or staring at the wall and I’d be doing something far more valuable. I’ve justified my obsession with phrases like “I just need to relax at the end of the day…” Even I don’t buy my lame excuse. I’m hooked. I’m writing today to confess that my obsession has taken a turn for the worse.

A new season of Survivor and a new season of the Amazing Race have both started and I’ve not watched a single minute. Why not? Have I been cured? Not a chance. I’ve been too busy watching the most incredible reality show play out on the “news” channels. I don’t have a editorial team packaging the footage from each week’s activities on the “island” into a one-hour show for me. So I have to do it myself. I have to watch CNN, FOX, MSNBC, the Comedy Channel, and Saturday Night Live and make my own editorial decisions. The night I caught myself combing through hits I found after searching “Levi” and “Wassila” on Facebook, before we knew the identity of the real Levi from Wassila, I knew I was hooked on a whole new kind of reality television. (By the way, I think I saw the real Levi’s page before it was pulled off Facebook, but I didn’t pay much attention to it as I was distracted by the “wrong” Levi…)

The cast of characters is perfect for a real reality show, balanced with racial, gender, and age diversity. There is eye candy—personality—and enough back-stabbing-game-play to make a reality show producer drool.

I can look at poll numbers and read the New York Times, and appear to be doing something useful. Or I can read every blog I can find from Alaska and twenty or more comments about an op-ed in the Wall Street Journal, comments written by folks who don’t know any more about any of this than I do, and know I’m just getting my fix.

It really is a terrific show. I wonder if I’ll be able to watch Survivor and the Amazing Race again after Nov. 4? Or will they just seem lame in comparison?  Especially since I'm on the "jury" for this show.  I have a vote.

Friday, October 03, 2008

Fact Check

Okay, so Dave still gets credit for going to camp with Alex.  However, when I picked up Alex at school the next day, he told me that Daddy didn't stay at camp.  After everyone went to bed "Daddy went back to the office."  I thought I'd better check this one out.  Turns out that Dave was needed at a business meeting the next day in Indiana, so after lights out in the cabin, and after being sure there was enough adult supervision in his cabin (there were two "extra" men on the trip), Dave drove to Indy, stayed in a Super8, and went to his meeting.  

Funny, he never mentioned any of this to me???   Is there a serious communication problem in our marriage.  Please don't answer that.... 

At least he didn't stay in a nice hotel.  

He still had a better than average dinner waiting when he got home, because I'm just a nice person--and I'd already thawed the meat...

Tuesday, September 30, 2008

IEPs

Both boys had IEPs yesterday.  I had to go to work, so I missed part of Joseph's and all of Alex's.  It is amazing to trust a school (and a spouse) enough to miss all or part of an IEP meeting.

Joseph's special ed teacher said she "laughed when she read my email."  That is the bit I posted last week in response to the form she had asked me to fill out...   I guess I didn't think it was funny.  She didn't mean it at all maliciously.  I think she thought I'd captured the essence of Joseph, and she knows him well.

They are working on getting Joseph out of his "Joe Bubble."  That is the SLP's phrase.  They want him communicating with peers, and have good ideas about how to make that happen.  

They never asked for a similar profile on Alex...   I guess that is because he works with a different special ed teacher, and has a different set of challenges.  

Every one at the school continues to be very, very positive.  I told them as I was leaving that I appreciated all of their hard work--and that I was pleased because I'd not cried at an IEP meeting for a full year!  They all looked at me in horror--I guess they don't really know how awful the experience is in so many instances.

A colleague has asked me to speak to her class, an upper level class for music educators about "special education," but not a music therapy class.  I have a few weeks to think about what I want to talk about.  Any ideas?


Dave and Alex at Camp

Joseph and I are having a quiet evening at home by ourselves.  Alex and Dave are on an overnight camp.  The entire 4th grade goes to a nearby camp for two days, one night.  Alex was SOOOOO excited last night I doubted he would sleep at all.  My guess is he won't sleep very much tonight either.  Hopefully, they run them until they are exhausted.  We didn't think we should send Alex on the trip if Dave didn't go along--or the teachers were really going to have to keep an eye on him.  I thought he would have been pretty scared to be away from home and in a strange place--even if he were with friends and familiar teachers.   So, bless Dave's heart for going.  He will not get much sleep, I bet.  He and another adult will be in charge of a cabin of 12 boys.  On the other hand, I'm in charge of a house with one!

My sad post from the weekend scored a phone call from my sister, so I guess it was worth it to 'fess up to honest feelings.  

I've been living up to my domestic disaster name.  Last Friday I came home from work to two loads of clean laundry in baskets in the middle of the kitchen that had been there, waiting to be folded for at least 2 days.  I made a decent meal on Saturday evening, but Sunday and Monday meals were barely edible--or I guess Monday was edible, but came from a pizza shop.  I got home from work at 6 PM, nothing was thawed, and I thought I should help stimulate the failing economy by buying pizza...

I'm going right now to thaw something to make for dinner tomorrow.  Dave deserves a nice meal!!!

Saturday, September 27, 2008

Rough time

I finished the first week of class--back in my old position. Not a good feeling. Teaching is great--I really love it--but it isn't a challenge. I greatly enjoyed that year of constant challenge.

I'm trying not to be down about it, but I am. Constantly second guessing my decision to resign.

So, to top off a stressful week we let Alex go to "open gym" last night. The place he takes gymnastics is open on Friday night for $5 for kids to come play and practice. I went to pick him up and found $5-10 worth of stuff from the snack bar that he had stolen. We took it all back, paid the $5 they wanted for the stuff that he had opened before we threw it away. When will Dave and I learn that Alex can't be left alone in situations like this. He will not make good choices. He must be supervised even though he is ten years old. Yes, Alex was very naughty, but Dave and I are the grown ups, and we are the ones that should know better than to put him in situations he can't handle. We want so desperately for Alex to be okay--and he isn't. As I have said before, Joseph may have the obvious disability, but Alex's is much harder. He seems typical, but he isn't.

So--Dave pushed my buttons this morning--told me I had "complained all morning." Poor man. He innocently made a very true statement; I reacted like a depressed woman with too much on her plate. (Granted, at this point, laundry is "too much" on my plate.)  We were heading out the door to the Minnesota football game. The boys were signed up to attend a day camp on campus where they attend day camp during the summer. By the time we finished the 20 minute drive to campus we had agreed that Dave would take the boys to day camp, try to sell my ticket, go to the game with a stranger, and I'd pick them all up 45 minutes after the game where I had dropped them off. So I've bought myself a quiet afternoon, home alone. Probably not doing anything to improve my marriage, but hopefully finding a way to pull out of the depressed funk I've been in because of my job...

Why do I share this? I think it is part of what raising disabled children is all about. Especially when you are a depressed parent. Maybe it is more about being a depressed parent than being a "Miracle League Mom." And I'm not the only depressed Mom or the only depressed Miracle League Mom out there.

Monday, September 22, 2008

OP-ED piece by Deborah Kendrick

I've wanted to say some of this, but she has said it better... 

Here are the first four paragraphs, the meat of the matter:

Alaska Gov. Sarah Palin has provided more than ample eye-roll material since her coming-out as the Republican vice presidential candidate.

I'll leave her lack of experience to other columnists. Disability is my beat, and the blatant exploitation of a cute baby to support a promise that has captured the hearts and hopes of too many parents of kids with disabilities was an outrageous slap in the face of every genuine advocate.

We have had real advocates as leaders in our government and we'll have more, but simply giving birth to a baby given a diagnosis does not an advocate make. Baby Trig has a label: Down syndrome. Period. No one knows yet what his disabilities, physical or cognitive, will be. The chirpy governor hasn't a clue what it is to fight for a disabled child's education, weigh the pros and cons of surgeries, find speech therapists or navigate the cruel land mines of prejudice that are encountered on playgrounds and hockey rinks.

Even if the condescending term special needs is acceptable to some, Palin has no business using it with regard to her youngest child. At nearly 5 months of age, he doesn't have needs that are much different from any other baby.

Deborah Kendrick is a Cincinnati writer and advocate for people with disabilities. Her email: dkkendrick@earthlink.net

Sunday, September 21, 2008

Joseph IEP

Joseph's IEP is next Monday. The teacher asked me to fill out a form that took some time and thought.  I'm typing my answers, so I'll post them here for anyone else that is facing IEP time.

I liked the first part of the form--how they try to keep the focus positive.  Tell us what your child CAN do, not what he can't... As you will see, the last part of the form was very hard for me.

Positive Student Profile

Who is Joseph? Describe your child, including information such as place in family, personality, likes and dislikes.

Joseph is the elder of two boys. His brother, Alex, is a fourth grader at Chapman. Joseph has a very good memory, and a good spatial sense. He memorizes math facts, spelling words, sign vocabulary, state names, etc. etc. easily. He likes to do jigsaw puzzles, and is pretty good at them. He likes to play Wii Bowling and Wii Golf, and he likes to watch T.V., especially Blues Clues, Sponge Bob, and football.

What are Joseph’s strengths?

Joseph does well with predictable structure. He can be bribed to cope with new activities and disruptions to his routine, but he is most comfortable when the world is orderly and just the way hel likes it. He complains when things are not just so, but once he realizes he can’t change it, he almost always is okay.

What are Joseph’s successes?

Joseph is fairly independent at home. He ties his own shoes, carries his dishes to the sink, tries to make simple foods like cereal or toast. He rides a bike with training wheels, but can’t quite ride without the extra stability. He hits a coach pitch ball in Miracle League. He is a very good Wii bowler. He can beat everyone else in the family, much to Alex’s dismay.

What are Joseph’s greatest challenges?

Joseph struggles to communicate, or isn’t motivated to communicate in most instances. He is good at expressing his wants and needs, but not good at telling us why he is frustrated or mad. When he is not happy, he can be challenging. Joseph has a hard time finding non-electronic things to do to pass time or relax.

What supports are needed for Joseph?

Joseph needs support to communicate. He needs an interpreter, computer, or alphasmart or something like it (?) and a lot of hands on direction and re-direction to control his behavior. We are constantly working with his Dr. to find the best Rx support we can, but that comes with a whole host of new and different issues.

What are our dreams for Joseph? Include both short term and long term goals.

We hope Joseph learns to direct his energy and focus into something productive. That is the long tem goal. Short term? We hope he continues to make progress, as he always has—slow and steady. Short term, I’d like him to learn to walk home from the bus, and walk to the bus. Maybe not this year but sometime during middle school? Also long term: we hope he develops some kind of functional literacy, so that he can read and follow directions, read simple stories and enjoy the narrative. I’m not sure how realistic that is. Another long term goal that I’m not sure is possible—If we don’t move, and if Joseph attends Scioto for high school, I wonder if he will be able to ride his bike by himself to and from school on nice days? He would need to cross Summit View and ride the bike path through the park to school. The bike path comes out at the school parking lot.


Vision for my child as a young adult:

Home environment—I envision my child will
a. live in: Eventually some kind of group home
b. live with: some kind of support system, probably 24 hrs/day
c. be able to: do something productive

Work environment—I envision my child will
a. work in:
b. be employed as: there should be something he can do that requires a good memory and attention to detail. I don’t know what
c. be able to:

Community environment I envision my child will participate in
a. places:
b. activities:
c. social events:

I hope that my child will develop relationships/friendships with:
His caregivers and peers?

I would also like my child to:

I think that my child will probably need the following supports and/or environmental modifications:

-------------------
This page is really hard. I know we need to start thinking about all of this, but I’m not quite ready.


Thursday, September 18, 2008

Miracle League Mom

We have heard so much about Soccer Moms and the Hockey Moms, with and without lipstick, as of late that I’ve been thinking-- What about “Miracle League Moms?” I’ve been using the term of late with friends and family. I checked Google, and there is no direct hit for Miracle League Mom, or Challenger League Mom, or even Special Olympics Mom, used in the sense that we use Soccer Mom or Hockey Mom. So, I'm going on record in this blog post...maybe I've coined a new variety of the almost worn out phrase. Perhaps this is part of my wanting to be mainstreamed; I want my own “_____ Moms” group. Okay, I’m being a bit inconsistent, because I now want a separate group, but indulge me.

Joseph is a devoted Miracle League player. We started in Challenger League, but moved to Miracle League because the field where they play is closer and has a fence so Joseph can’t run and run and run and run.

Alex takes gymnastics. We tried soccer. It was a disaster. He is a child that is too competent for Special Olympics or Miracle League, but regular team sports are way beyond him. Many things are that way for our Alex. He falls in the cracks. He doesn’t have obvious special needs, but he can’t keep up with the typical kids either. In many, many ways Joseph is easier.

Hits close to home...

An interesting week

The Central Ohio region has had a hard time recovering from our little wind storm on Sunday. The Domestic Disaster's household, and all the others on our street, were very, very lucky. The power came back on after just six hours. Many still have no power going on six days. Our boys were home from school for two days. Many area districts will be out of school for the whole week. And let's not even think about those in Texas...

I visited The Domestic Goddess in Indiana last week as I drove home from delivering Mom back to Iowa and bought $200 worth of meat from my favorite meat market--which just happens to be 209 miles from home. I am very happy that I wasn't trying to figure out how to keep all that meat frozen!

How do other Miracle League Moms cope with big changes in daily routine? Our kids are a bit more dependent on predictable patterns than others. I know I am dependent on electronic help with my children and on the few hours of respite care we have each day. The wind storm disrupted the lives of my respite care helpers--two people called off work this week. Dave looked at me yesterday as we read the news about how long the power would be out elsewhere in the city and said "You would have been crazy!" Yep, honey. I would have been crazy. How nice of my dear husband--that statement implies that I'm not already "over the edge." He can be so sweet.

Monday, September 15, 2008

Gotta love that shredder

We had a very big wind storm in Central Ohio yesterday. I guess the remains of hurricaine Ike met with a strong cold front and created sustained 30-40 mph. winds for several hours. The airport measured gusts to 75 mph. We have two big branches down. One is still hanging in the tree and will require professional help. We are lucky. One neighbor has a tree down in the front yard, another has half a tree on her deck. We lost power for 6 hours. I'm so grateful we have power back today. The boys are home from school today--but we have light, TV, and cold food. Some in the city are not so lucky.

So, I've already been out shredding. I will be able to shred and shred and shred until I'll wish I had not bought that thing!!! We'll have more firewood. One dead tree in the woods came down. I wondered if the others I cut down last week would have toppled in the wind had I not cut them already?

Thursday, September 11, 2008

Domestic Goddess' Tamale Pie



The Domestic Disaster made Tamale Pie using the Domestic Goddess' recipe. Yum. We all liked it. I used just 1 lb. of ground beef and a can of black beans instead of the turkey in the original recipe.

Monday, September 08, 2008

My new toy

I bought a new toy yesterday--all for me. This is something I've wanted for at least a year, and could not find! I saw an ad in the Sunday paper and could not wait to go buy it, put it together, and start playing...

What is it?


A chipper shredder!!!! I've chipped a big pile of dead branches collected over the past year into about a bushel of nice mulch. Ah--the domestic disaster is delighted to have an electric chipper shredder to go with her electric chain saw. (Really, I have my very own chain saw.) If the weather is nice tomorrow, I may use the chain saw to take down a couple smallish, dead trees. My mom is still here. She can call 911 if I cut off my leg. I've actually taken down a tree all by myself already.

Why is this so satisfying? Why do I enjoy this heavy work so? I love getting good and sweaty, but hate going to the gym. And I just love working outside. Dave doesn't do this kind of work, and he is really too clumsy to allow access to a chain saw. I like to use our wood stove to help heat the house. I feel a bit guilty, 'cause burning wood isn't exactly good for the ozone layer, but burning coal to make the electricity to run our furnace is not carbon neutral. (We have an all electric house.) My brother bought me a splitting maul for Christmas last year, and taught me to split wood. I've very slow, but I can do it.

I guess I can't explain it, but I love my new toy!

Friday, September 05, 2008

Here's to Dave


Dave is being inducted into the "West High School Alumni Hall of Fame" tonight.

I'm proud of him and pleased that others recognize what he has done for the community! I've even put together an "outfit" using his school colors "buff and brown" to wear to the event.

Tuesday, September 02, 2008

Visit from Grandma

My mom is here to visit.  91.  That pretty much says it all.   She is starting to fade a bit, but is really doing remarkably well.  She commented today over lunch that she never expected to be where she is now.  Her siblings all died at a younger age, or were seriously ill by the time they made it to 90, so she has no close role models for getting this old and still having her wits about her.  She notices that she is slowing--she is thinking about making plans to move to a smaller place, with three meals a day--  Giving away her furniture, bit by bit--  I told her that if she moved she should plan to spend several months with us while between homes.  She admitted she had thought about staying here.  I'd be happy if she did.  It is nice to be forced to slow my pace to meet hers for a bit even if it is also frustrating--all in all--I think we would be fine.   I'm glad to know she is comfortable in her room here.   Having her here would be another benefit of giving up the more demanding job I left at the end of June.  I'd have been pretty stressed trying to care for her over any kind of long term with the other job, but with the current job, I should be okay.

The boys enjoy her, although she doesn't exactly know how to relate to either one.  While she was here in January--and so very sick--Joseph had a routine.  He realized that he could sneak into her room after dinner and watch "Wheel of Fortune" on her TV.  She was truly so ill she barely noticed.  I thought it was cute, so I'd just let him.   She isn't a "Wheel of Fortune" kind of woman, never has been, so it was funny that the grandchild was the one turning the TV to that channel.  

Wednesday, August 27, 2008

Inspiration/Mainstreaming Moms

I've been mulling over the subject of inspirational people ever since reading Jerry's blog entry from a few days ago on the subject.   I guess he felt some heat the day after writing this from his wife's friends who didn't quite agree with him -- I can't do a good job summarizing Jerry's point of view, so just click on those links...

Why did this strike a chord with me?   Don't I want folks--friends, relatives, strangers, etc. to be impressed and inspired by me?  Well---  I guess I would love that (who wouldn't?) but sometimes it is mixed with a kind of sympathy I don't want.  Usually, when someone says something genuine about how I'm a good parent it is ten minutes after I was a completely horrible parent--so I can't fully appreciate it.  

We special needs parents are just like the rest of you--really--we are.  Our kids are difficult/tough/trying/frustrating/exasperating.  But so are all kids.  We sacrifice a lot.  But so do all good parents. Our kids are the loves of our lives.  Just like yours.  Nothing feels as perfect as holding hands with either one of my boys--and mine still let me.  Perhaps I just want to be mainstreamed.  I don't want to be set aside in a special room; I want to be in the room with all the other parents.   There is enough about raising special needs children that is isolating--I always feel different in the store, different at school, different at church, different walking back from the bus stop because I'm the only mom on the street that has to walk my kids to the bus.  All the other kids can just walk down the block by themselves.  In the store my 11 year old acts like a three year old and I can feel the eyes on my back as I talk Joseph through the aisles...  "Yes, honey, I know you want to go that way, but we are going this way now.  Just wait honey, Mommy needs to look at this.  Oh, Joseph, you are doing such a good job being patient."   This the the public "Mother" voice I've created for Target and the grocery store.  If I say these soothing things a bit louder than I normally would, all the folks who hear Joseph making Joseph noises get the message that "This is a special needs kid, and the situation is under control.  Not to worry."  My "Mother" voice is as much for the strangers as it is for Joseph.  Maybe more so.  The examples of this are endless?  Does that make me an inspiration?  No more than the Mom whose child is getting straight A's 'cause she diligently read to him every night for six or eight straight years.  

I think the crux of it is that I would so much rather be a normal mom than an inspirational mom.  I'm not the Mom of "typical" kids.  I'm a special-needs mom.  But I'm still just a mom...  Mainstreaming is good for kids, and I bet it is good for Moms, too.  

Monday, August 25, 2008

First Day of School 2008

In honor of the first day of school I am finally scanning and posting the very sweet notes Joseph brought home from school last spring.  We moved to find a better school situation for Joseph.  It was a big hassle.  We left neighbors we loved and a house we could easily have lived in for the rest of our lives.  This stack of notes, tucked into Joseph's bag on the last day of school says it all.  The move was worth it.  The new school has been much better than I'd ever hoped.  I can hardly read these notes without crying. The children in Joseph's class really appreciated him.  He was a bit of a class project, or you might even say a class pet, and that is okay with me.  These kids learned from him.  He has something to teach us all.  Every parent should also know that there are wonderful schools and wonderful teachers that know how to foster a good learning environment for every child.