http://www.wcmhblogs.com/ en jsmalley@wcmh.com Copyright 2008 2008-07-19T13:43:00-05:00 http://www.wcmhblogs.com/bradys_page/the_biomed_update_tmi/ http://www.wcmhblogs.com/bradys_page/the_biomed_update_tmi/#When:12:43:00Z This week Sarah and I met with Dr. Demio to get what seemed like a thousand test results.  What we learned about Brady may explain some of his problems---may not, but may very well.  First of all, Brady has strep in his gut.  What’s more, it’s imbedded there--Brady never gets sick, and this may explain why.  We also know Brady is not processing his food properly--not even close.  His levels of Iron and Yeast are some of the highest the doc has ever seen!  That’s just a small example of what’s wrong with his body, which may be affecting his brain function. So what’s next? Lots.  We know Brady will be taking all sorts of supplements and trying some progresive therapies.  There’s been such a public debate about chelation in recent weeks… and I’m not sure where I stand just yet.  All I know is it works for some kids… doesn’t for others. It can be dangerous if not properly exectued. We are not beginning this with Brady yet, maybe not at all. At this point, we’re still compiling info on the proper supplements--it will be a very slow and steady approach. One of the other therapies we’re debating is the Hyperbaric Chamber (H-Bot if you’re in the know).  Many kids are seeing great results from the pressurized oxygen, which hypothetically stimulates brain function.  I think we’re leaning toward trying this, although it is quite expensive to rent time. Some families have gone as far as to spend $20,000 to put a chamber in their home.  If you remember former OSU receiver Anthony Gonzalez, he sleeps in a high altitude tent--essentially the same concept, except training his body to function at a normal level in areas with less oxygen--basically increasing his stamina.  In summary, it’s sad to know that Brady’s really sick inside--but no one, including Brady, would ever know.  We know he might not feel as well through the healing process, but long-term it could be a huge breakthrough for him.  JEROD 2008-07-19T12:43:00-05:00 http://www.wcmhblogs.com/bradys_page/upcoming_awareness_events/ http://www.wcmhblogs.com/bradys_page/upcoming_awareness_events/#When:02:19:00Z I met so many nice people at our softball tournament, and was handed event flyers, DVD’s, therapy ideas, etc. So here’s some of the upcoming events to keep in mind. Autism awareness night at Cooper Stadium-Aug. 20th.  Several autism organizations will gather for the Clippers game that night.  Autism families can get special reduced price tickets.  And Brady and I (after his fine pitching performance Sunday) have been asked to throw out the first pitch. For more info email Doug Krinsky at yogi1125@aol.com. A father told me about a Car Show at Polaris Parkway’s Quaker Steak and Lube Aug. 16 at 3pm.  They’ll have live music, plenty of food and, of course, sweet cars!  You can get more information by calling Mike Hoover at 580-7300. This benefits Oakstone Academy. My favorite event of the year is the OAD Outing for Autism Sept. 8 at Pinnacle Golf Club in Grove City. You can still reserve a foresome for the tournament and dinner/auction.  Please call Dave Stynchula at 614-348-4483 and do it fast as spots are running out. And tell Dave you want to play in my foresome, ‘cause I’m totally winning this year!  The most significant event in terms of money raised, the Autism Speaks Walk kicks off Oct. 12th on OSU’s campus.  Dr. Gee is the honorary chairman, and I’ve been asked to emcee the walk. Their aim is to raise more than 600-thousand dollars!  For more info on you can join or sponsor a team for the walk, check out http://www.walknowforautism.org/columbus.  NBC4 will have a team in the walk! Of course there are many, many more events going on.  Post your event in the comment space for this article so everyone can read!  Peace Jrod 2008-07-15T02:19:00-05:00 http://www.wcmhblogs.com/bradys_page/many_thanks_for_softball_success/ http://www.wcmhblogs.com/bradys_page/many_thanks_for_softball_success/#When:02:18:00Z It started as an idea to goof off with our friends on a weekend. It ended as an event I’ll never forget. Our softball showdown for autism turned into a great success, thanks to many generous people.  It was a pleasure meeting so many of you and hearing your personal stories. Unfortunately, I was so busy I didn’t get to spend much time with the folks I met, but it was great to put faces with names. Obviously, Brady was our motivation to put the tournament on, and the Bradster enjoyed himself!  He smiled, hugged random women (i knew he was a playa-haha) and even threw out the 1st pitch.  I hope if you were at the tournament you got to meet Brady, in between his autograph signings!. I am so proud, not only of our champion NBC 4 team, but of all the players who took time on a Sunday to give us a hand.  Without the players, this event doesn’t happen. Organizing this tournament, I learned just how many good friends we have here.  The guys from 10tv, ABC6 and QFM96 were AMAZING.  They responded when I called and just got behind the effort. I’m honored to know them and thankful that so many good people work in our business. But the reponse from NBC4 was amazing.  Most of our staff came out to play, watch or help with the games. Our people are a family, and it’s great to see the whole station pull together.  We had so much fun we couldn’t stand it! Thanks for helping make the Softball Showdown for autism a success-and we will bring it back.  I just need your suggestions on things to fix and improve for next year. Thanks again and I’ll soon include photos. 2008-07-14T02:18:00-05:00 http://www.wcmhblogs.com/bradys_page/softball_benefit_update/ http://www.wcmhblogs.com/bradys_page/softball_benefit_update/#When:03:40:00Z We’re about a week away from a fun event and a unique event in the autism community. Sunday, July 13th we’ll gather for the Media Softball Showdown for Autism.  NBC 4 along with 10TV, ABC 6 and QFM 96 will field teams in what’s sure to be a titanic softball battle (i’m overselling it, I know).  We’ll get things started at 11am Sunday at Hoff Woods Park in Westerville. We have some amazing sponsors on board so far---Whole Foods Market, Costco, Home City Ice, Graeter’s Ice Cream and Phat Wraps are among the companies giving us a huge hand.  We’re inviting everyone, especially autism families, to join us for a fantastic day at the park.  If you’re not into softball or meeting big time TV celebrtiies like Cabot Rea, Jeff Hogan, Clay Hall, Jerry Elliott, Amy Basista and maybe, just maybe, Ben Gelber, you can enjoy the huge playground, lake, basketball and volleyball courts there at Hoff Woods. THIS IS A FREE EVENT!!!  BUT.... it is a fundraiser.  We’re taking donations for Children’s Hospital Autism Center, which is based in Westerville.  They provide the therapy program in which Brady participates.  They do a phenomenal job with children, but need our help to increase their resources for families. We’ve also invited other programs such as Step-By-Step Academy, Helping Hands and Oakstone Academy to bring their kids and families for a great day.  Mindy Drayer and I have worked to make this a fun, friendly event and we’d LOVE to see you there. If you’d like any further info, just comment on this blog or send me an email at jsmalley@wcmh.com. Thanks JEROD 2008-07-04T03:40:00-05:00 http://www.wcmhblogs.com/bradys_page/update_on_all_going_on_with_brady/ http://www.wcmhblogs.com/bradys_page/update_on_all_going_on_with_brady/#When:11:17:00Z Lots to report on this week.  First off, I am excited to say that Brady finally seems to be transferring his use of pecs to a nonfood or drink item!  This weekend (a couple times) he brought me the picture of his computer game when I was sitting at the computer!  That is huge for us, because even though he has always used pecs for food and drink, he hasn’t ever wanted to use them to request anything else.  I put some pictures below of Brady playing the game he requested...you’ll see how much he enjoys it! On the biomedical front, we have 2 more weeks until our follow-up appointment with Dr. DeMio, but the test results are rolling in now.  So far, we know that (1) Brady has a very high amount of tin in his urine (2) Brady has strep in his gut, (3) Brady tested insanely high for a couple types of yeast and (4) Brady has an obscene amount of hippuric acid in him.  There are still several results I don’t know yet, but that is what we are dealing with so far.  Its weird, because you want something to work on so I thought I’d actually be relieved to see there is something off balance inside him...but instead, I look at him and want to cry because he can’t be feeling too good inside with all that going on.  I am anxious to get started on clearing up his gut and making him a healthy little boy.  I just pray it helps his development along the way.  We have been doing a few supplements over the last couple weeks, including B12 shots.  We’ll keep you posted on that, but so far so good, lots of babbling...help us pray for the words to come! As for potty training, there have been ups and downs, but overall I think he is doing pretty well.  I won’t lie, his therapists (who are amazingly helpful daily in this potty training process) have been peed on more than once, but he is getting the hang of it.  We average about one accident a day, but there have already been a few accident free days!  He doesn’t have the initiation step at all yet, but he seems to be trying to hold it until we put him on the potty (we are on a schedule), mostly I think because he doesn’t like to get his underoos wet...he LOVES to wear underoos!!!  Sometimes he actually protests putting a diaper on for naptime or bedtime now.  I’ve been excited to see him take an active role in getting dressed now...he can put on his own underoos and shoes (those are his 2 favorite pieces of clothing), and is very helpful with his shirt and shorts now too! We are in the middle of our MFE with Olentangy Schools, which will be completed in August before his 3rd birthday in September.  Friday the school psychologist came to observe Brady in our home, and after the show he put on, I have no doubt he will qualify for services . Friday was the worst day he has had in months, and inexplicably.  After his nap he was a little better, but his morning class at Little Gym and his morning ABA session were a huge struggle.  Since then, he has been back to his adorable little self.  I just wish he had the words to tell me what is going on when he has a day like that. What else, what else...our waiver is up and running, we are beginning to take advantage of all that his medicaid card can offer us, and I am still learning about the autism scholarship.  We had to say good-bye to Stephie, Brady’s speech therapist since we entered Help Me Grow a year and a half ago, but he starts with a new lady tomorrow...let’s hope it’s a good match!  We are taking a break from OT, just until he turns 3, so we will be back up and running with that in September.  We are going to start trying craniosacral therapy in the meantime to see how Brady responds to that.  So much going on, we visit a new pediatrician next week, are planning for his start in a 2-day preschool this fall, and we are really looking forward to the big softball fundraiser Jerod and Mindy are planning - “Media Softball Showdown 4 Autism”.  Mark your calendars for July 13th and see Jerod’s previous blog for more info there. Well, we are off to COSI in a couple hours for the first time in months...I hope Brady is still a big fan...I know I am!  Happy 4th to you all, travel safely! 2008-07-01T11:17:00-05:00 http://www.wcmhblogs.com/bradys_page/days_of_our_lives/ http://www.wcmhblogs.com/bradys_page/days_of_our_lives/#When:01:39:00Z I won’t lie...I have watched “Days of our Lives” since the 4th grade!  Don’t tell Jerod...but where do you think I first thought of the name Brady???  For several weeks now I have been telling my Mom I thought this was coming.  Things Lexie has said on the show, you could just tell as a family of autism that is where they were headed.  I am not usually proud to say I watch a soap, but I am proud of a soap opera for diving into such a huge issue affecting so many families.  This past week, Theo, Lexie and Abe’s son, got a diagnosis of autism.  So far they are showing the effects it has on the family’s relationships, and I am curious to see where this storyline will head.  The only downfall so far is that they keep using the word “autistic”.  To most people in our society, that word isn’t offensive.  To a mother of autism (at least this mother), that word hurts.  To me, Brady isn’t autistic - it doesn’t define who he is...Brady has autism - it is something he has.  When someone suffers from cancer, we don’t call them “canceric”, we say they have cancer, and I think autism should be treated the same way.  Anyway, that’s my two cents on that. Check out this link if you want to learn more about the storyline on Days of our Lives: http://www.autismspeaks.org/press/days_of_our_lives_autism_story.php “Days of Our Lives” and Autism Speaks Team Up for Autism Storyline Award-winning daytime drama “Days of Our Lives” is launching a new storyline focusing on how the whole family is affected when a child is diagnosed with autism. The story will be based on the experiences of the series’ head writer, Dena Higley, who has raised a child with autism. In the story, Dr. Lexie Carver (Renee Jones) and Commissioner Abe Carver (James Reynolds) are told their 3-year-old son, Theo, has autism. In developing the story, “Days of our Lives” has joined with Autism Speaks to help convey a message of hope and impart accurate and useful information. 2008-06-30T01:39:00-05:00 http://www.wcmhblogs.com/bradys_page/what_do_you_do_when/ http://www.wcmhblogs.com/bradys_page/what_do_you_do_when/#When:02:54:00Z What’s normal for a kid and normal for a kid with autism are sometimes quite similar… and other times, way, way different… so I thought I’d share some of Brady’s common behaviors to see if your kid has a similar style, and if you’ve done something to curb it. For example… Brady is addicted to television (which is not a big problem for us).  It’s just that he insists on standing a foot in front of the tv… we all know that’s really bad for the eyes, but he wants to be close to the action. Was this common for your kids, and how did you get junior to step away from the screen?  We’ve got a chair Brady loves to sit in and watch tv--which sits about 10 feet from the tube.  He gets excited at something and bolts from the chair right up to the screen, and it’s really tough to pull him away! A few other ideas to get the ball rolling---we did a program a few months ago in ABA/IBI therapy getting Brady to set a cup on the table, as opposed to just dropping it wherever he is.  Well… he still does both quite often.  How can we get Brades to become more consistent in his keeping cups and food off the floor? How about this… many kids nibble on their finger and, dare I say, toenails (also, many adults--see: jerod).  Is age 3 too early to use some of the poor tasting nail polish, or is there another way? Those are just 3 ideas… I’d love to hear your feedback and also if you have a question concerning your child, ask it here!  Thanks JEROD 2008-06-29T02:54:00-05:00 http://www.wcmhblogs.com/bradys_page/what_a_potty_party/ http://www.wcmhblogs.com/bradys_page/what_a_potty_party/#When:01:52:00Z Where do I begin...just 4 days ago we dove into the world of potty training.  Most typical developing kids potty train around age 3, and Brady is just 33 months old.  He is much younger than most kids with autism even start trying.  So, are we crazy?  Maybe...but so far so good!  Thursday and Friday were Brady’s “Potty Party”, Children’s Hospital’s “kickoff to potty training”.  We literally spent nearly every waking hour either on the potty, on the way to the potty, or on the way from the potty.  Our house should have had a revolving door on it, with our consultant, therapists, observers, and grandparents (for reinforcement of course) coming and going throughout the day.  It was an interesting and tiring few days that hopefully put us on our way to diaper freedom. It all began at 8am Thursday.  Brady did really well throughout the day, enjoying reading his Nick Jr magazine, doing puzzles, singing, playing with Toby the Totbot all on his Elmo potty.  As he had success, we rewarded him with mini Oreos, fruit puffs, favorite videos, and time outside on his new swingset.  There were accidents of course, but nothing we couldn’t handle.  I was prepared at the start Thursday with 11 brand new pairs of underoos...and we didn’t go through them all in the 2 days, which was a pleasant surprise to me.  Everyone worked very hard to keep Brady happy and entertained while he sat on the potty, and most of the time he seemed to really enjoy himself.  He likes attention, so having all these friends hanging out with him was fun I think.  We worked every time we took him to the potty on showing him his pec for the potty so that at some point he will tell us he needs to go potty with this picture.  By the end of the day Friday we were set to give it a try on our own all weekend, the true test I think.  Saturday morning we went to swim class, got there safely without an accident, had fun in class, and truthfully I would’ve bet money he’d gone peepee in the pool.  (Don’t all kids do that?) So, we headed off to the locker room to change out of our wet clothes for the ride back home, got Brady changed back into his underoos, and just as I began changing myself, he had the biggest peepee accident yet...all over the women’s locker room.  So, we cleaned up our mess, and headed to the car in a second pair of dry underoos.  Now we were home to camp out for the weekend and figure out Brady’s potty schedule.  His therapists gave us some extra help Saturday, and Sunday we were totally on our own. He had his ups and downs Sunday, but the best moment yet came late in the day.  I got him out of bed just after 4 from his nap, his diaper was wet but not warm...he had been going about 2 hours between pees, so I hadn’t put him on the potty yet...then at 5:20 he ran to me, sat in my lap facing me, grabbed at himself while looking me in the eyes like he needed me to know something.  So, we took off running to the potty, and within seconds of getting his underoos off he peed in the potty, with only a small spot on his undies.  I know it isn’t perfection, there was no pec involved...but I was thrilled he made such an effort to not go in his underoos and let me know he needed to go!!!  For a little guy that doesn’t communicate with us very much, this was HUGE!  I am sure we are in for some ups and downs, successes and accidents, but the boy LOVES his underoos!  He is already putting them on himself (sometimes both legs in one hole, but he’s learning) after he’s done.  Maybe we are crazy for trying this so early, but he was showing interest and does not like to have on a dirty diaper.  And I won’t lie, when everyone left Friday evening and the kids were in bed, I went through one of those incredibly stressful “overwhelming moments”.  But, I think that is something we autism moms just have to relive every so often, wondering what the future will hold, how we can recover our beautiful children, why we have been chosen for this journey...but that is a whole other blog...for another day… 2008-06-23T01:52:00-05:00 http://www.wcmhblogs.com/bradys_page/more_staycation_fun_building_bradys_playset/ http://www.wcmhblogs.com/bradys_page/more_staycation_fun_building_bradys_playset/#When:01:20:00Z So as our “staycation” continued, Wednesday (and sadly, Thursday) were designated as Brady’s playset day(s).  A few weeks back, Sarah found a great deal on a backyard swingset which we thought would be great for Brady.  He’s quite the sensory kid (which many kids with autism become), enjoying big movement and rough play (especially on daddy’s gnarly, vacation beard!).  Here’s the key to Sarah’s “great deal"… we had to assemble it.  And by “we” did I mean Sarah and I… hahaha of course not. She did however send reinforcements.  Her dad and brother.  Wednesday at 8:30am we cracked open the first of two massive boxes. By 8:57pm, we had assembled something that looked like the pictures on the box---of 27 assembly steps we’d finished 22.  How we got there was a trip in itself...A few hours into the endeavor I read what the company said to allow for construction time:  16 hours!  This would be backbreaking hell, right? Nah.  We were the most cooperative trio of worker bees ever.  We shared tools, hustled, covered for each other for bathroom or water breaks. And about halfway through the afternoon… the Bradster came out to visit--he stomped on the pieces we’d finished and stared curiously at his daddy sitting in a “treehouse” with an inkpen in his mouth, hammer in hand, confused look on face. It was a shot of life---a reminder of what we were working for.  And by Thursday morning---27 hours after we started… 15 hours of labor complete… we finished.  It’s a beautiful swingset and something to look at in my barren, brutally ugly backyard. The Bradster already loves it.  He’s been down the slide and rode on the glider.  His smile and curiosity were worth every hour of “connect slot AB into Joist L with 1’ 1’’2/3 inch Hex Bolts, angled to corner.” Lesson learned---we pull together for our kids.  We endure long days, splinters, a black thumb (thanks to a direct blow from a hammer), all to give kids the joy they deserve. For kids like Brady, we’ll work days, weeks, months to draw out those smiles.  2008-06-20T01:20:00-05:00 http://www.wcmhblogs.com/bradys_page/bradys_wild_trip_to_kings_island/ http://www.wcmhblogs.com/bradys_page/bradys_wild_trip_to_kings_island/#When:19:08:00Z Clark Griswold would’ve been proud. He shoulda been a Smalley. Picture this scenario. Sarah, her mom and dad and brother, me and Brady and Ty jammed into a Toyota Sienna for the 90 minute drive to Kings Island. Linda (sarah’s mom) marks her territory in the cramped 3rd row of seats. The family squirms, occasionally bickers, laughs, etc. Linda starts singing along with her Ipod-forgetting that she’s practically yelling. Sarah’s dad gives her driving advice such as “it’s a parking lot not a freeway!” David (bro in law) is hanging on by a thread. There have been several violations of Sarah’s strict no-profanity around the kids law. Lord, take me now! Brady and Ty are the best behaved people in the car. Ty’s asleep (somehow) and Brady’s rocking out to a Laurie Berkner band DVD.  “Sarah! That lane ends!” Mom and bro yell out. “I know i know...” Sarah shyly replies, just moments before the Mason exit off I-71. A long set up for this… Tuesday we took a day trip to Kings Island because Brady loves the Nickelodeon kids area. He lights up around the characters and smiles and giggles on the little tyke rides. A beautiful day...we pay 15 bucks to park the Smalleymobile. We get everyone in and head straight for Nickelodeon land. This is when the whole clan comes together. It’s like the Wonder Pets say, teammwork. Everyone takes turns taking Brady on a ride, making sure he’ll actually sit in the car and stay buckled in. The little man did a great job, even riding his first roller coaster. It takes a village to do a trip to Kings Island. Let’s call it Brady’s autism posse! We pushed a double stroller and dragged a wagon along with all of Brady’s supplies. Kid had food, toys, clothes-anything he needed within reach. He was never bored and smiled till his cheeks hurt. By 3:30, Brades and Ty were good and tired, so we piled back in our trusty Sienna and headed home. The whole point of this bizarre account is to remind all of us that we need to take days away from B12 shots and ABA and just treat kids like kids.  Go to the park and play, listen to music, get out in the sunshine and laugh a little. Every now and then, leave autism behind for a day. All of us battling autism need this kind of release, to just relax and feel like your average family. That includes the embarassing car ride and the hassles of a trip. Brady will thank us later. Unless we threaten to do it again! Haha -Jerod 2008-06-17T19:08:00-05:00