I’m going to talk about how we found out Jack has autism, but first, I need to clear up something. If you read my blog regularly, you know I’m always on an emotional roller coaster. Normally, it’s a pretty good ride, but not always. I had my latest throw-in-the-towel thoughts yesterday, but I’m over that now. I’m done throwing a pity party for myself. I wasn’t seeking feedback, but I got plenty of it and I’m grateful for it because it was very reassuring. And really, with the first race on the schedule one month from today, it needs to be all or nothing at this point. And I’m voting for all.
I really don’t like being this way with you guys, but I am who I am and I’m not going to fake it in my blog. Tiff got a little mad with me over the weekend because for about the fourth time in the past five months, I’ve waffled on whether or not I should do this. So please, forgive me for my incessant whining. You guys are my biggest supporters and I appreciate your enthusiasm. I’ll just start counting down the days until go-time. We’re at 31 now and I’m looking forward to meeting as many of you as possible next year when I run 60 marathons to try to build awareness and raise money for Train 4 Autism.
Anyways, yesterday, one of my loyal readers, Erin Fortin, asked me to blog about how we found out Jack had autism. No problem. Thanks for giving me a topic!
When Jack was younger and we took him for his well check-ups, he was behind on all the age charts. When he was 18 months old, we had him evaluated by specialists per a recommendation from our pediatrician. He was at the 6-month level for speech, which was an eye opener. So, he immediately qualified for in-home early intervention services. I wasn’t particularly concerned. Our oldest son was slow with his speech and speech therapy fixed him right up. It would be the same thing with Jack. Or so I thought.
He’s had therapy at least four days a week for 2+ hours a day since before his second birthday. When we was about 2 1/2, I remember coming home from work one day and I was in a hurry to rush out to a ballgame, but Tiff looked very concerned and told me she needed to talk to me. I was wondering what foolish purchase she’d made. But what she told me was something that was beyond surreal. She told me that the woman who ran the agency that was providing the services really thought that he had autism.
Well, I instantly went into denial. I have an uncle who’s severely autistic and there was no way I was going to have a son like my uncle. That wouldn’t happen to “me”. Surely he was just behind on his speech and he’d get there. But Tiff gave me a pretty good rundown about the reasoning and it all made sense.
You know that feeling you have when somebody dies and you know that there’s absolutely nothing that you can do to undo that? I felt that way about Jack’s autism very quickly, maybe even that day. I’m not comparing autism to death, and it’s treatable, but what’s done is done. I knew right then that this would be something Tiff and I would be working with for the rest of our lives. At the beginning I was optimistic that he would fight through it and mainstream, but that optimism has a carbon half-life and it fades by the day.
On November 7, 2006, about six months after that day that Tiff talked to me, we finally got Jack in to see a pediatric neurologist. Yeah, nobody wants to take their kid to see a pediatric neurologist. But we wanted to get a diagnosis just to confirm. He was 3, not anywhere near talking, and clearly in his own world. I really don’t think he knew who we were at that point.
The neurologist was very, very cold and unfriendly. She did her observation, left the room for about 15 minutes and told us to clean up the mess Jack made, then came back in and asked us what we’d been told. We told her we’d been told that he probably had autism. She asked us if we had any reason to doubt that. No, we didn’t, but we wanted confirmation. She asked us why we were expecting to hear anything different, and told us that yes, he was autistic. The adjective she used was “severely.”
That doctor is very, very reputable in the autism community, but I don’t think she could have been any colder to us that day. Maybe it’s no big deal to her since she probably diagnoses 20+ kids per week. I thought she could have shown a little more compassion, though. I’ll never forget that visit. I didn’t think Jack was actually severe, but the more time has gone by, the more I realize she was right. He’s 6 now, not truly talking, still in diapers, still way behind. He rated lower than a 1-year-old on certain things he was tested on recently in school.
So Erin, that’s how we found out Jack has autism. He’s a cute little guy, super sweet and very nice. I hope we end up taking the family trip out to Cleveland so you can meet him.
That’s all I have for today. If anybody else has any blog ideas questions for me, don’t hesitate to let me know! Have a great Tuesday!
Jamie Fellrath says
It’s a hard thing to accept that diagnosis, but once you know the problem you can work with it. Thanks for sharing the story with us.
BTW – you should mention that Operation Jack is one of the charities people can nominate to get funds from Chase Charitable Giving on Facebook! I voted for you and Jack and it’s easy to do!
http://www.facebook.com/ChaseCommunityGiving?ref=ts
Emil Cheng says
Since I started running marathons, I knew I wanted to run with a greater purpose. I had been searching for a charity close to my heart. I had gone with TNT, Team Duke, and Worldvision. They were all great charities, but I still had not found the one for me. I know it was no coincidence that I met you through RWOL. My younger brother is autistic. I’ve been his part time guardian since I was able to help out my mom. Most likely I’ll be his sole guardian when my parents pass on unless my older brother decides to help out. I look forward to making OJ/Train4Austism the charity that I’ll support wholeheartedly through my running.
Erin Fortin says
Thank you so much for that, Sam. I wish that doctor had been more compassionate. I can’t imagine going through what you, your wife, and family go through every day. Jack seems like such a sweet kid, I can only hope I get to meet him in May! Thanks again for sharing your story!
Ally Phillips says
That’s just terrible “bedside manner”! Of course I’ve never been in that situation, but, I could only imagine that doctor’s should and would have more sensitivity in that. Sheesh.
He sounds like a great kid 😉
Jen Morgan says
My Aunt had a similiar experience with my cousin; she realized she was a late bloomer but didn’t really read into it until someone forced her to open her eyes and see what was in front of her. It was hard for her family but they quickly got her into therapy and what not. I’m happy to say that Ashley is now an almost completely functioning 10 year old. She still takes special classes and has her “moments” but for the most part they were able to catch it early enough and she was not classified as severe.
When I went home for Chicago Marathon in October I got to meet for the first time the newest addition to their family, my cousin Joseph who is now almost a year old and sadly, I believe he is headed down the same path as his sister. Again my Aunt seems not to notice the signs but they are all there and I’m sure it is only a matter of time before a doctor points it out to her. He will be 1 years old in a few days and can’t walk, stand, crawl or even hold his head up with assistance. He does not speak at all and he has that lost look in his eyes. Wow… I don’t know what inspired me to share this, I haven’t share this with anyone. To be honest having this spring up again in my family makes me wonder if I will someday have a similiar scenario. Only time will tell I guess.
Thank you so much for sharing your story and I can’t wait to run with you in Feb!