Special Parenting

Originally posted on 8/28/11
Yesterday, we attended the wedding of Sue's cousin. Teddy was really excited about dressing up and going to the wedding. Of course, as soon as it started...he was ready to go! But, amazingly, he did really well. He went the full 45 minutes without even a slight outburst. A wedding for most parents is a normal event at some point. They expect their children will get married. For us, what would be a "happy" day for most parents would be an ecstatic, winning the lottery, reprieve from the governor, crying for joy, miracle before our eyes type of day. One of our greatest hopes for Teddy is that he would be able to get married someday and with our help be able to raise a family. We have no idea what the future holds in this regard, but he is a tall, handsome boy with an interest in girls...so maybe it isn't just a dream on our part. So yeah, watching the wedding was a melancholy sort of moment for me and I wasn't sure why until later when I thought about it. I actually heard a man the other day, a man that actually makes over $100k a year bragging that he didn't have to pay for his daughter's wedding, like he had gotten out of a burden. When you're a special needs parent though, you get a new perspective on the miracles in life that seem so mundane to so many people. If Teddy gets married, we won't be worrying about how much it costs!! For us it will be one of the ultimate victories in this long struggle. Same with college....I hear so many parents complain about paying for college, even parents with means, to me that is a champaign problem. Of course, it is easy for me to see and judge them for their lack of gratitude and I quite possibly don't understand "normal" parenting any better than they understand special parenting. All of this said, I would never trade with the "normal" parents. I would love to not have the stress and worry of being a special parent...but I have never for one second ever wanted to trade.

Speaking of understanding: Friday night I had a dream that we were at a Wal Mart with Teddy and another girl with special needs...they both ran out of the Wal Mart with fishing poles, didn't pay for them, ran across a busy street and started fishing in a pond. I caught up to them and I was furious in my dream and I didn't have the best reaction...yelling and poking the both of them with my finger (which I don't think I'd really do, but I have had reactions I would have liked to have changed in real life)...I just remember and will for the rest of my life, the complete look of shock on both of their faces...they had had such a joyous and natural response to seeing an opportunity, and they didn't understand that I was going to have to impose the real world upon their more perfect world. I was sad about it all day, but on the upside I actually put this dream to use last night...after we got home from the reception last night, Ted threw some cardboard in the toilet (luckily it didn't get flushed this time...last time that cost $150 bucks) I caught him before he had a chance to flush...he was certain that I would be angry and he was yelling to himself how stupid he was...but I just told him "no big deal lets figure out a way to get this cleaned up" and instead of an hour of chaos, he peacefully went to sleep a few minutes later.

All Abilities Airshow!

Originally posted on 7/4/11

Yesterday afternoon we were invited to the Special Needs Airshow. It was a great idea. While the huge crowds were downtown under the Arch watching the real airshow, we were invited to the downtown airport, along with other families of people with disabilities, to watch the planes take off and return to the Arch grounds. They also did little airshows for us as well...the highlight of the day for Teddy was John Mohr in his old Stearman...Teddy enjoyed that part of the show the most. Another highlight was Jason Newburg in his Viper. The jets were great too, but the prop planes, not going so fast or so loud were exactly what Ted wanted to see. These two pilots were incredibly skilled and as a student pilot myself, I was in awe of what they could make those airplanes do. The heat was such that Ted didn't make it to the end, but if we had, the pilots were going to take time to meet all of the people with disabilities and sign autographs and let them touch the airplanes. I wish we could have been able to do it, but Ted did pretty well considering a little crowd and heat. But, whoever had this idea really understood special needs. They understood that if you are in a wheelchair, it is tough to get through the crowds on the Arch grounds on the 4th of July weekend. They also understood that for kids like Teddy, the noise and big crowds (of sometimes people who are judgmental of our children's outburst) can be problematic. So, we had a really short walk from the car, when we checked in they passed out hearing protection and then there were lots of free drinks and popsicles...first class all the way! This was the most understanding event that I have ever attended...you dream of events like this for your kids when they have special needs and it was amazing that it really happened.

Meet Ginger!

Originally posted on 5/15/11
We finally picked out a new dog at the county shelter last week. Teddy picked her out and named her "Ginger" from Gilligan's Island. He wants everyone to know that her last name is "Grant" too! She is a 25lb Beagle mix and Teddy really loves her. She is maybe a year old and exhibits a lot of puppy-like behaviors...but I think she will be a great dog for us.

IMHA is a dog killer

Originally posted on 3/10/11
This is the last picture of Buster...our very much loved dog who was only 5 years old. This was last Saturday when everything was fine. About 9 hours after this photo, he wasn't himself anymore and never came back. We went on a two mile walk at the new Meramec park along the Meramac River in south St. Louis County. As you can see we made it one mile before the flooding forced us back...so 2 miles with Buster pulling and jumping and being his energetic self the whole way. Later Saturday night about 10:30 I walked him another mile and he was totally normal. At midnight, right before bed I let him out, but when he came back in he wouldn't eat his treat...so we knew something was wrong...he was really sick looking...so we let him sleep in our room with us to keep an eye on him...he didn't move the whole night, next morning (Sunday) he was looking like death so we brought him to the emergency vet...they diagnosed him with IMHA...a horrible auto-immune reaction which destroyed all of his red blood cells and platelets...it might have been a reaction to his vaccines he just got on Wed, but who knows for sure. What is really horrible for us it that Teddy had something like this when he was born...so when the vet said it was complicated and tried to explain platelets etc and auto-immune disorders, we stopped her and told her we knew too much about it already. What is shocking is how this typically comes on instantly and is deadly the majority of the time...it especially attacks dogs in the prime of their lives. So, enough technical stuff, we are all just really in shock and devastated...we've had a run of bad luck since about December and this was just what we didn't need. We've been struggling with Teddy's seizures since December, which of course affect his behavior negatively, then we controlled the seizures with Zonegran, but it had terrible behavioral side effects...so just this week we switched to a new med called Banzel....hopefully that will somehow work out. Finally, Sue wrote a lot better story about Buster on her blog.

Teddy's first job!

Originally posted on 2/5/11

We've had a lot of freezing rain, sleet and snow in the last weeks...13 snow days so far! Teddy loves to shovel snow and in fact he loves manual labor of all sorts. In the video, you can see how he cleared our driveway for us...he was so depressed when we were finished, I told him, let's go ahead across the street to Jerry's and do his for him. Jerry suffered a stroke last year and we had spotted his wife out there earlier, but she had given up after a few minutes. After Tina (Jerry's wife) saw that Teddy was out there shoveling, she insisted that Teddy get paid for his work...I told her not to worry about it, but the next day she gave him a thank you card and $20 bucks!! Teddy was very proud and this was, I thought, his first money that he has earned in the neighborhood...but I am remembering as I write this, that Bob, straight across the street, pays Teddy every once in a while for bringing his trash can back to his garage every trash day. Sue and I were really proud of the hard work Teddy did shoveling and no doubt he'll make a lot of money in the coming years shoveling, mowing and raking!

Epilepsy Walk

Originally posted on 12/5/10
Yesterday, for the first time, we participated in the Epilepsy Walk at Crestwood Plaza in suburban St. Louis. Considering it was our first year, Team Teddy, had a good turnout and we were thankful for the support of our family and friends.
Teddy was having a really hard day, condition red....Turbo Red...he was continually whining, crying and causing as much disruption as he could...there was a person wearing a lion costume and that freaked him out badly...to say the least...This should have been an event that worked for him, not that many people, a calm walk indoors, no loud music...but something was wrong. He pretty much broke down when he lost his helium balloons...Steffi tried to jump up and grab them, but they were too high, but luckily she ran back and got him some more....which at least allowed us to finish the walk...Then we went to lunch at the Breadco...and things just weren't improving...he was having a fit and acting badly the whole time...near the end of the meal, when he was eating a Pumpkin Muffie, he suddenly jerked and almost knocked his water on the floor...and that is when we noticed he was having a seizure mid-bite...it lasted about 30 seconds or so...Teddy's unexplained bad behavior and seizures certainly are related and that explained a lot...sometimes a seizure will change his mood from bad to good...but no such luck this time, it was red until bed...My Dad and Carrie even left a little early because we couldn't hold a conversation in the house. We found it highly ironic that Teddy had a seizure right after the Epilepsy Walk...seizures are one of the worst problems we deal with right now.

2nd Place in the Science Fair!

Originally posted on 11/27/10
We were very proud of Teddy for coming in 2nd in his school's science fair! Teddy was also very proud and excited. For two days he sat in front of his tri-fold reading and rereading each page and looking at the pictures of his candles that he burned for the experiment. He also spent a lot of time just looking at his red ribbon. We also would like to honor his teacher and teacher's aide for all of the hard work they did with Ted helping him type out his hypotheses, evidence and conclusions...he is very lucky to have such hard working teachers.

On a side note, I am quite amused to see my grey hooded sweatshirt (yes, the kind that Rocky wore in 1976) wadded up in a ball on the floor...all last week when I asked Sue for help finding it, she suggested that I check the floor where I probably balled it up and left it...and yes every time that is where it was and so now we have photo evidence of my only shortcoming!

Kansas City!

Originally posted on 11/2/10
Last summer we won 4 free round trip tickets to ride on Amtrak. We finally took advantage of them last weekend and took an overnight trip to downtown Kansas City. It was Teddy's first train trip and he really loved it. He held up amazingly well on each of the 5 hour train rides. He especially liked walking back to the Cafe Car and picking out treats to bring back to his seat. Our host daughter Sarah from Germany went with us and also really enjoyed her first American train trip.
Teddy had been looking forward to Kansas City for a long time. KC is supposed to have more fountains than any other U.S. city and as my readers know, Teddy loves fountains. Luckily, he was not dissapointed. There were fountains everywhere and as many and different types as he could handle. One fountain on the Crown Plaza even danced to music on the hour!
We ended up staying at the Westin right in Crown Plaza and luckily for us, right near all of the fountains. Other highlights of our trip included Fritz's restaurant, which featured burgers loaded with hashbrowns delivered to your table by a small train! The National WWI Museum was surprisingly good and has a really nice tower from which you get an excellent view of downtown. But, speaking of views, the thing that I will always remember was the view of downtown from our 14th story hotel room...it was really spectacular! And one more thing: We also met Sue's cousin Joey and his girlfriend Daria for dinner and a night tour of the Plaza fountains.
--Teddy is really growing up and we managed the trip, had a lot of fun and made some good memories.

Our Exchange Student

Originally posted on 9/11/10
Many of my readers may not know that we are hosting an exchange student this year: Sarah from Germany. We were hopeful, but also fearful about whether or not this would be a good thing for Teddy or the exchange student. Luckily, it is working out just fine and Teddy is really warming up to his new Gastschwester (Guest Sister). Teddy is being challenged, because we do more than we used to, but it is good for him. For example, we went to the football game last night, because Sarah is in the band. At first, he was having a fit, didn't want to go and didn't want to be there, but after about 20 minutes, he really got into it and didn't want to leave! Sarah has been with us 4 weeks today and we are all right in the middle of a transition phase, from her being like a guest in our home to being like a real member of the family.

Visit

Originally posted on 7/19/10
This weekend my father and step mother visited from Wichita. Teddy did really well most of the weekend and we were able to go to restaurants and do a few other things.

Top Gun

originally posted on 5/16/10
Teddy is very proud of himself for being able to reach the medium pull-up bar at JB. He was also very proud of his Aviatior "Top Gun" sunglasses. Unfortunately, a few minutes later he had a breakthrough seizure that lasted longer than usual, about one minute. He stopped walking, almost fell down, pupils constricted and he was very confused for a few minutes. In the last few months he had some seizures breakthrough his meds, but this is the worst in a while. Not sure what to do about it yet except to tell his neurologists. Like we always say, there is joy with Teddy everyday, but we haven't had an easy day yet.

Snow Day Fun!

Originally posted 2/9/10

Teddy was SO disappointed that we didn't get a half-day yesterday, but his wish came true overnight and we woke up to about 4" of fluffy snow and best of all..a Snow Day! We spent the day sledding (on two different sleds), chasing buster with snowballs and watching a lot of Scooby-Doo while we warmed up in between rounds. We had bacon, eggs and hotcakes for lunch and Teddy was especially enthusiastic about the bacon! These are the kinds of days that are truly the best days of a life and I wish I could just push the pause button.

Teddy has also been enjoying his Lite Brite. Last night he made 3 volcanoes on his Lite Brite Cube. Again, those are times that might not seem so special at the time, but 20 or 30 years from now, I am certain that I would give anything to go back to a night years before, when Teddy was 10, working his Lite Brite, while we anxiously waited for a possible snow day...a snow day that came true and that we thoroughly enjoyed! I think that is one of the advantages of having a child that survived crazy health problems and has special needs, is that I am actually able to enjoy those moments that I used to take for granted, while they are actually happening. Those mundane types of moments like on Our Town, but I actually can see behind the veil every once in a while and see the moment for what it really is. But, it's a little sad to see those moments too and know that they can't last. But, here we are again tonight, Teddy is watching more snow fall, he has his animals (electric hamsters, an elephant and a repeat parrot)all running and I just got the call...No School again tomorrow! Teddy let out a vigorous Whoo-Hoo when I told him the good news!

The Lion (originally posted 1/31/10)

Since right after Christmas, Teddy has been pale and often complains of being tired. Of course, because of his history, we were concerned. Then he was sick the last two weekends, one of those with strep throat. His pediatrician ordered a blood draw (CBC), but for a number of reasons we went back to his pediatric hematologist-oncologist's office. This was Friday right after school and Teddy was not at all happy about having a blood draw, but his doctors thought it was a good idea to rule anything crazy out. Teddy was so scared and nervous, but then when he was younger he had to get blood draws more often and when he was a baby, everyday...so he justifiably has issues with needles! But, after a lot of fussing, tears and 30 minutes of emla cream, he didn't even notice when the needle actually went in and then after he noticed, he calmed down. He picked out a matchbox car from the doctor's toy chest and then decided he needed some Chinese food after the ordeal and we settled in to sweat out the results. Luckily, when you go to this particular office you get the results fast and his doctor told us that if anything too crazy showed up, the lab would call him that night and then he would call us. Luckily, no phone call. But then, Saturday morning as I was leaving for a meeting, Teddy said he wasn't feeling well. I called home after I arrived at the meeting and Teddy had thrown up again, this time with blood in it. Now, what had been a routine and typical experience of sweating out results, became a little panicky. I called the hematologist's office and was told that everything looked normal on his CBC. I called Sue to tell her this, to help calm her down. In the meantime, Sue brought him to his regular pediatrician's office. She said that a little blood in vomit can be normal and confirmed that his CBC results all looked normal. I wasn't much use at my meeting and was stressed the whole time. Luckily, I finished my part of the meeting early and headed for home.

Our lives can be a roller coaster sometimes and today Teddy started feeling better and it started warming up a bit, so we went to Shaw's Garden and he is still feeling good this evening.

The visit to the hematologist's office was scary, but reassuring at the same time. Here were some of the same doctors and nurses that helped save his life when he was a baby and it was a happy reunion to be sure, but on the other hand, we were there again and we always live with the fear that the old problems might come back. But, thank God, The Lion appears not to be in our house again. But, once you have a lion in the house, even if you beat it back, you are always afraid of a return visit. Driving alone to meet Sue and Teddy at the Chinese restaurant, I fought back some of my emotions and memories of how scary those old days used to be.

I never want to give the impression that we had it worse or more stressful than anyone else. If it was one thing we learned back in those early days, it was how bad it could get. One family we got to know on our frequent visits to the hematologist's office had a four year old boy. On Christmas eve in 1999, Teddy's doctor came into our room and told us to turn on Oprah. We were shocked to see that same four year old talking to Oprah about what he wanted for Christmas...a motorcyle. I saw Oprah nod in a way that I knew meant that he was going to have it, but it didn't take us long to figure out what this all meant. Another time, we were sharing a room with 9 year old boy who had just had brain cancer surgery. We heard the boy ask the doctor straight out if he was ever going to be able to play baseball again...then we saw the doctor sadly shake his head and tell him no. Another boy we shared a room with was an 11 year old with spinal and brain stem cancer. The poor boy had lost complete control of his bowels, had to wear a diaper and was totally humiliated by it. His grandmother kept apologizing to us, which we repeatedly told her was unnecessary. His grandmother kept telling us what a good boy he was and wondered why this had to happen to him. It was hard to get past all of this in the months and years after Teddy recovered. We were basically given a pardon from this hell and have been scared about going back to that world ever since. I remember one night in the summer after Teddy recovered, not being able to sleep and sitting in the dark in the living room recliner just angry and sad about those 3 boys. It didn't make sense then and it still doesn't make sense to me now.

In lighter news, Teddy is really loving Fitness Club! As you can see in the picture, he especially loves his "punch bag"! We are going to try to find him some youth sized gloves so he can punch it as much as he would like. I have been working with him to make sure that he hits it properly, so that he doesn't injure himself.

Fitness Club

Originally posted on 1/16/10

Teddy is down with strep throat this morning. He started complaining about his throat right before bed and sure enough has been up sick since 4:00 this morning, he has thrown up several times and is mainly just watching cartoons today. Luckily, we got him into his doctor this morning and we have already started the antibiotics.

The video today is from "Fitness Club" which is run by the T.A.S.K. organization here in metropolitan St. Louis. He complained that he didn't want to go, but he really loves it. He has been talking non-stop about the heavy bag, so after he feels better we are going to go out and buy some gloves. Teddy has been in a personal Renaissance lately. School has been going better, he joined the track club at school and he is very proud that even though it is hard, he hasn't quit. Coach Smith even let us know that when he told them to run 8 laps the other morning, Teddy was going so fast that he actually did 10 instead of the 8 the others did.

Intellectually he is progressing well also. Thursday morning before school he demanded that we get his old dinosaurs out of the garage before school. He lined them up on the living room floor and we started reminding him of his old nick-names he had for them...but that wasn't what he wanted, he wanted to know the real names of each one and he has been busy trying to memorize them all. Also, I bought a new flight simulator for the computer and at first Teddy was too afraid to even watch the planes fly on the computer, now he demands that we fly each flight together with him as co-pilot.

In tougher news he wasn't feeling good already towards the middle of the last week (as you can see from his paleness in the video) and his doctor thought we should do a blood test (CBC). Now, Teddy has probably had over one hundred of these, most of them in when he was a baby and he has developed a real phobia of needles...he started kicking and crying and the nurses at the lab refused to try and we left, a traumatic incident and no information. We made an appointment with his hematologist for Tuesday, so if he isn't back to himself from this strep throat by Tuesday, we will have them check him out and they no doubt will figure out how to get the blood draw done if they really think we need one. Hopefully, we can avoid that somehow.

Snow Day!

Today, Teddy and I had our first snow day of the year. It snowed hard overnight and it is still bitterly cold. Teddy spent the day shoveling snow, sweeping snow and sledding! He jumped for joy this evening when we learned that we have another snow day tomorrow! Originally posted on 1/7/10

2010 comes in with a bang!

Originally posted on 1/1/10

My neighbors love fireworks more than anyone in the world. They never disappoint when it comes to fireworks! Last night they rang in 2010 with their customary exuberance as you can see in the video. Teddy tried to stay up to midnight, but only made it to about 10:00. The fireworks woke him up at midnight and he ran out and watched them. Teddy loves fireworks almost as much as our neighbors! Luckily, he fell right back to sleep.

We were thinking back to our New Year's Eve 10 years ago, when Teddy was just 2 months old. We were both sick with some type of flu, felt horrible and we both had high fevers. Teddy had just had an operation a few days before to place his central line and he was getting all of his nourishment through a TPN bag. The line on the bag kept getting clogged and we had to reposition the bag and line almost continually to keep it flowing. So we took turns in 2 hour shifts staying awake that night and into New Year's Day. This wasn't how we imagined ringing in the new millennium! We kept thinking of our friends who were celebrating under the Eiffel Tower in Paris that night and we were upset that our former, carefree lives had changed so radically. The years have really changed us. Now we would rather spend New Year's Eve with Ted and watch our neighbor's fireworks than be anywhere in the world! Looking back, we are extremely thankful to have made it 10 years with Teddy; our odds didn't look so good back then. It really puts his "red zone" behavior that we deal with periodically in perspective.

A White Christmas with Red Zone Behavior :-(

Originally posted 12/25/09

We really lucked out and had a white Christmas! But, Teddy was also having what we call "Red Zone" behavior today. I think the video above says it all. The excitement can always be a factor, but he seemed to be on the edge of having a seizure today or some kind of related neurological disturbance. But, we did manage today and we were able to stay at his grandma's for a few hours. Teddy's favorite gift today was a "weasel ball" that Santa must have picked up at the Cracker Barrel. He was especially happy that Santa left it under the little Christmas Tree in his bedroom.

85th Birthday!

Originally posted on 12/19/09

Last weekend my grandfather, James Kirby, turned 85 years old! Teddy did incredibly well at the party and helped his great grandfather blow out his candles.

The St. Louis Zoo

Originally posted on 12/23/09
On December the 5th we visited the St. Louis Zoo. It was about 25 degrees and windy, which was great for us, because we had the zoo mostly to ourselves. The only downer was that Teddy had a breakthrough seizure right as we were leaving. He became very confused for a few moments and almost fell down.

We have gotten into the habit over the years of visiting popular sites at unpopular times, mostly because Teddy often has trouble in large crowds. So if it is raining really hard, or if it is extremely cold you will often find us at the Zoo. We have a set pattern of going through the zoo: First, check the fountain outside of the visitor's center, then warm up inside, next check the Elephant, then warm up at the Bug/Butterfly House, then the long walk to the Reptile House (Teddy's favorite, he loves snakes) checking fountains all along the way, next are the cats and Zebras followed by a short warm-up at the Bird House and finally we work our way back to the bears and penguins before departing. Teddy is very attached to his particular route, so bringing guests with us doesn't work very well, not unless they want a very quick tour following the agenda outlined above! I highly recommend the St. Louis Zoo. Before Teddy was born we visited the San Diego zoo and we both agreed that our zoo was better because our zoo is free of charge and there aren't buses and trams with loud speakers causing congestion and noise. So, next time it is 10 degrees on a Saturday morning...look for us at the St. Louis Zoo, but good luck keeping up with us!

School Program

Originally posted 12/5/09

Here is Teddy (top row, blonde hair) at last night's Christmas program (The Heartland Hoedown). He complained and cried all week that he didn't want to do it and we really had low expectations going in (we literally dragged him to the car), but he surprised us and did a really good job! He kept telling us he didn't have a role in the program, but that wasn't the case either, he and another girl pulled a Conastoga Wagon across the stage. Now he keeps telling us how much fun he had last night! We had such low expectations that we didn't invite anyone else and now we really regret it...but special parenting is challenging and luckily, last night, also filled with joy...

"The Best Halloween Ever!"

Originally posted 11/1/09
Teddy declared that Halloween this year was "the best ever!" Of course, last year, we ended up in the ER about 2:00am with strep throat, so this year was bound to be better. He was in a great mood and really enjoyed being a pirate. He made a real haul and it is amazing he hasn't gotten sick with the amount of candy he has eaten. A lot of our neighbors were demanding jokes in exchange for candy last night, which for a special needs child can be challenging. At first, he didn't say anything and just left, then later he started just saying non-sensical things and the "joke demanders" would relent and give the candy away unearned...I wasn't sure what to do, but then luckily I remembered a joke he liked and we worked it out so that we did it together. So for the second half of our Trick-or-Treating it went like this:

Dad: Hey Teddy what does the spider want with his hamburger?
Teddy: French Flies!

Everyone enjoyed the joke and then Teddy began enjoying himself and got his confidence back up. After the big haul, we visited his babysitter and then, on the way home, Teddy was determined to find the "big flashlight" (a strobelight) that has been on every night south of our home for a month...we finally found it and the haunted house which it was advertising. We skipped the haunted house for now...maybe next year. Another highlight was our neighbor across the street. Teddy brings Bob's trash cans up from the curb for him twice a week and Bob "paid" him for his work last night: a bucket of candy bars and two $5 dollar bills...Teddy was thrilled: "The Best Halloween Ever!"

Childhood Stroke Awareness Walk

Originally posted on 9/13/09
This morning we participated as best we could in the Childhood Stroke Awareness Walk at Jefferson Barracks Park in St. Louis County. We didn't think we could get Teddy to even go, but the promise of unlimited donuts motivated him. Unfortunately and not at all unusual for us, it went downhill from there. He didn't like the crowd or the fact that we weren't taking our normal walk at JB Park. A lot of screaming and uncontrollable crying as you can see from the photo.

A childhood stroke can manifest itself in a variety of symptoms. Most children will have paralysis or stiffness of a limb (usually on the opposite side of their stroke), some children will have seizures and others will have behavioral and intellectual disabilities. We were lucky in that we didn't experience the physical manifestations, but we have not at all been lucky in the other areas. Most people don't even realize that children can have strokes and that was what this walk all about. The walk and the organization were organized by Jessica Spear, a friend of ours whose son also suffered a stroke. She has an excellent website where you can learn more, click the photo to link to her site.

We did manage to take our walk, but we had to modify our plans and be flexible. We walked a few minutes before everyone else and managed to finish it. Of course, we wish we could have walked with the group, but we have learned to be flexible and to find the wiggle room in our lives, do what we can and be thankful for those small victories.

Ban the 'r' word!

Originally posted on 9/8/09
Today after school I was in the car with Teddy when I heard a report on NPR about the 'r' word.Rethinking 'Retarded': Should It Leave The Lexicon? Of course, the story peaked my interest for several reasons. First and foremost, my son had a stroke at birth and as a result has an intellectual disbability. I wanted to listen to the story, but I didn't want him to hear the 'r' word even in this context, so I turned it off and correctly assumed I could find the story online. It is amazing how many people use the 'r' word or similar cutdowns either for a laugh or to express their superiority. Just last weekend my wife and I turned off Saturday Night Live because the first act after the monologue featured a non flattering portrayal of an intellectually and physically disabled person as a singer on the Lawrence Welk Show. We hadn't watched SNL in several years and we both hoped that we wouldn't hear the 'r' word or something similar, but amazingly it only took about 5 minutes for them to take a low blow at people with disabilities. We have also heard family members that should know better use the 'r' word and once I heard our former assistant principal explain a problem student this way: "well, what do you expect, he rides the 'short bus'".I do think we are making improvement in this area and on this word. Last year on Channel 1, which airs everyday in my high school, there was a commercial that ran sponsored by the Special Olympics which asked students not to use the 'r' word. I think it made an impact. Instead of hearing it 20 times a day in the hallway, I might hear it twice a day and so far this school year I have only had to talk with 2 students who used it in class.We are making headway, but as a society we still have a long way to go. I read an article in the New York Times in 2007 that pointed out that about 90% of women that were given a Down Syndrome diagnosis chose to have an abortion. A sobering statistic about attitudes many people may have about my own son, but I think banning the 'r' word can only help.

St. Louis Children's Hospital

Originally posted 8/9/09 on my old blog:
Last week, while Sue was at work, I took Teddy to his appointment with his neurologist. Normally, going to the doctor with Teddy isn't much fun, but we made the best of it. Luckily, Teddy was in a great mood. His neuro came in with two young female doctors doing their residency. During his exam, Teddy snuck in a few smiles and waves at what he called the "girl doctors." I told the neuro about the two breakthrough seizures we had in June and we upped his meds a little bit to adjust his ever increasing size, so hopefully that will do the trick. Teddy normally complains a lot about feeling funny, dizzy, headaches etc. etc., but when his neuro asked, he said: "nope, never, feeling great!" Teddy, thus successfully avoided another 24hr. EEG...for the time being.

Now, it was time for fountains. Children's put in a roof-top garden on the 8th floor. The garden has a stream, a viewing deck and several fountains, which Teddy really loves. After half an hour up top it was lunchtime. We went down to the cafeteria and had chicken strips next to another fountain/stream which really made Teddy happy. Then to top things off, Teddy picked out a chocolate pudding, with whipped cream and oreos. When we left, he was actually happy that we had another appointment at Children's Monday with his endocrinologist!