Saturday, July 21, 2012
Dauphin Island, Alabama
1. Not crowded
2. Clean beaches
3. Gentle waves
4. Friendly people
5. Family Friendly
6. Not a party destination
7. Not expensive
8. Not a super long drive from anywhere in the Mid West
9. Diverse activities available on the island for many family members including: Fishing (from pier, wade fishing and Deep Sea excursions departing from the island), Jet Ski rentals, Parasailing, Estuarium, historic Fort Gaines and a Bird Sanctuary.
10. Chicken Strips are available at the Chevron Grill (the gas station has a nice little store).
We were here during the week, so we can't say anything from experience about the crowds on the weekend.
This was the longest vacation we have taken with Teddy and as you can see in the photo, he really loved it and wants to go back! A big win in our world and we made some great memories.
Thursday, July 19, 2012
Traveling with Special needs
Anyway, in addition to the Alabama they have a hangar of historic aircraft that I found interesting and they have a B-52 and B-25 on the grounds....and I almost forgot...they have a submarine too the USS Drum, but as you can see from the picture Teddy was a bit in the red zone on this morning due to the heat and a seizure that afternoon we didn't know was coming. But, we managed the park and would love to go back.In fact, the only reason we went to Alabama this year was because Teddy liked to say Alabama and decided that it was his favorite state...so since he was motivated to visit, we used this to take the longest vacation since he was born and it all worked out pretty well. Teddy insisted that we both buy USS Alabama ball caps and we both wear them all the time now! The key in our world and every special parent and special kid's situation is unique, but in our circumstance, the key is traveling alone, just the three of us...this provides us with maximum flexibility and doesn't disappoint anyone besides us when we have to change plans quickly...such as leaving the battleship park a bit early, stopping what we were doing after his seizure on the beach later that day so he could take a nap and recover and finally, he became homesick and we went home a day early...these are hard things to do if you are with other people, but this is our world and we made the best of it for sure. We were really happy that we went on this trip...more on this trip soon!
Sunday, June 10, 2012
Bob's Country Cafe in St. James, MO
Thursday, May 24, 2012
Slingers in House Springs, MO
Teddy had a serving of bacon and a stack of delicious pancakes. He was also happy that diner has plenty of ceiling fans!
Teddy loves sitting at the counter and Slingers has a long counter with plenty of stools. We are hoping to hit Slingers one more time before summer break is over! One more thing: as the name implies, yes you can order a slinger here or in fact several slingers if you are really hungry!
Sunday, April 29, 2012
Sunday, April 22, 2012
The Wrong Stuff by Truman Smith
I began this book once again reluctantly...I had made a nice "friend" or something of a companion when reading my last book in Siegfried Knappe....my "book friends" are important to me...generally they are going through some type of epic struggle, generally in war...something very different than my epic struggle: raising my son as best I can, helping him navigate the world and keep him healthy. The struggles of others are a great diversion for me from my own worries and in that sense, history is a great comfort to me. I have tried to read about other special parents and what they deal with, but it strikes to close to home generally and only compounds my worries. So, luckily, I found a new diversion in the Wrong Stuff, learned more about the bombers in WWII, which will eventually help me and give me more depth when I write my book about the Hetzler Crew. Also, I did find a new book friend in Truman Smith or "Smitty" as some people in the book called him and now so do I! Smitty arrived in the ETO just a few weeks after the Hetzler Crew were shot down and killed. He was one of the few Co-Pilots that have written books and he became the PIC or head pilot on his last few missions...and amazingly he was only 20 years old!!!
At first, I wasn't so fond of the book. The overview and simplification of history I found annoying at the beginning, but I stuck with it and this turned out to be one of my favorite books. Smitty ended up flying 35 missions!! There weren't supposed to be many German fighters by this time in the war, but Smitty would definitely tell you that there were!!! Not just a few, but dozens and sometimes hundreds! The flak was always present. Smitty truly felt a lot of heat and it was a miracle that he lived through the war. I had so many favorite parts of this book, that I won't be able to cover them all, but a few do come to mind. The overriding back story in the whole book is Smitty's quest to lose his virginity...he comes close a few times and losing the "sure things" and bumbling some great opportunities with women in London due to his age and inexperience. Also, he points out how strange it was to feel so old as a combat veteran, but so young in regards to women! At one point, he finally meets an 18 proper English woman riding her horse and all is going well and it looks like this will be IT, but...he woke up...turned out all to be a dream and even stranger, the young woman was "Queen Elizabeth"!! His brutal honesty about his lack of success with women gives the whole book added credibility and the story he tells of his combat experiences while unbelievable are no doubt completely true.
Another amazing part of the book to me was when he goes to another base to visit a pilot with whom he had graduated flight school--Paul Stout...his vivid description of the base reminded me of the Hetzler Crew's 458th bomber group's base, so I looked Stout up and sure enough, Smitty had visited Harold's base!! Sadly, Stout finished his tour of combat, but was killed later in a training exercise.
Smitty worked in TV and radio after the war and even eventually married a German woman. I did a quick search to see if Smitty were still alive and if so, what he is doing currently, but I haven't found anything yet.
Friday, December 30, 2011
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
Meet Ginger!
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!
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
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!
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)
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.
