Tuesday, September 30, 2008


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.