Your Questions Answered! Kind of!

Thanks to everyone who showed concern over my announcement (whoa, that was TWO WEEKS AGO?) that Jeffrey has been diagnosed with Asperger’s Syndrome.

Here’s the backstory:

  1. We’ve been trying to figure out Jeffrey with the help of various psychologists since he was 5.  It was thought with his initial testing back then that he had either ADHD or Asperger’s, but he was too young for an definitive diagnosis.
  2. From January-June 2008, we sent Jeffrey to weekly play sessions with a children’s psychologist.  (We had excellent mental health care coverage in Pittsburgh.)  The final call by Dr. J?  Possibly something called an “Executive Function Delay,” which will make it difficult for him to learn certain things (like writing and reading.  Bad news for his children’s librarian mom).
  3. Jeffrey discovers ancient Egypt, ancient Rome, the American Revolutionary war, and other things about history that continue to fascinate him.  First clue.
  4. In kindergarten, Jeffrey’s teacher didn’t think anything was unusual or different about him.  Although, he did get bullied by his peers that year.  I could tell that he was considered an “oddball” by his classmates.
  5. Within the first week of first grade, I began to get phone calls from his teacher.  Jeffrey needs speech therapy, occupational therapy, pull out time with a reading specialist, and why can’t he stay focussed long enough to complete the most basic task?  Jeffrey — who has always been a fidgety kid — begins a nervous habit of chewing his clothes.  Handwriting is painful.  Second clue.
  6. Christmas 2009 — we get a Nintendo Wii for the holidays, but Jeffrey is too excited to learn how to play them.  He still spends “Wii time” watching Brian and I play, and jumping up and down a lot.
  7. February 2010 — maybe Jeffrey has ADHD?  His pediatrician gives him a prescription for stimulant medication, but they aren’t as effective as they should be.  Anything beyond a very small dose gives him mania.
  8. February 2010 — piano lessons have become too painful to continue.  Jeffrey takes a break, and Eleanor takes his spot with his teacher.  She’s only 4 at the time, but progresses twice as fast as he did.
  9. March 2010 — Jeffrey develops a nervous stutter.  Third clue.
  10. Spring 2010 — Jeffrey goes in for consultations with the Center for Children with Special Health Care Needs.  We try antidepressants to help with his anxiety, but once again: mania.  He was running around the neighborhood barefoot in 45 degree weather.
  11. Summer 2010 — Away from school and classmates, Jeffrey’s stutter disappears.  His collection of books about ancient history is quite extensive.  He becomes obsessed with complex role-playing board games (like Settlers of Catan and Dungeons & Dragons), although he prefers to make up his own rules and detailed dramatic scenarios that his friends can’t understand.  He doesn’t seem aware when his friends are bored or unable to penetrate the rich fantasy world he’s constructed.  Fifth clue.
  12. June 2010 — Jeffrey takes an intensive reading workshop with the University Reading Clinic.  During his final evaluation, his tutor says “I think Jeffrey has autism or Asperger’s or something.”  I think: oh, you must have gone to a good medical school to make that diagnosis, Mr. Reading Tutor!  Geez.
  13. August 2010 — I ask Jeffrey if there’s any place he’d like to go for his last day of summer vacation, and he requests the Beehive House on Temple Square.  While there, he gladly answers all the questions the tour guides pose.  When Eleanor answers a question incorrectly (“the pioneers came on a train!”)  Jeffrey corrects her (“No, Ella.  The railroad had not been built during this time period.”)  Everyone on the tour thinks he’s brilliant.  Sixth clue.
  14. Second Grade — Within the first week, I’m once again fielding phone calls from his teacher.  Jeffrey needs speech therapy, occupational therapy, and why can’t he stay focused for very long?  Why does he keep interrupting class to talk about writing a play, or Egypt, or Star Wars?  I spend a lot of time crying.  We’re still waiting for the occupational therapy to get started.
  15. September 2010 — Jeffrey makes a poster about himself for school.  He insists that almost half of the poster be about history, and the other half about National Parks (Jeffrey is something of a fervent environmentalist.)  It’s pretty obvious to me by now what’s going on, although other family members remain skeptical.
  16. October 2010 — Jeffrey is tested by a psychologist who specializes in behavioral disorders at the Center for Children with Special Health Care Needs.  After Jeff delivers a lengthy monologue about ancient Egypt, the doctor declares his diagnosis to be “definitely Asperger’s.”  Oh, and that diagnosis of “Excecutive Function Delay”?  It falls on the Asperger’s spectrum.

So what this means is (to over-simplify it): in Jeff’s brain, his senses are heightened, but his reaction is to back away, to feel overwhelmed.  Jeffrey’s inability to focus isn’t caused by distractibility; it’s caused by anxiety, which is why he was stuttering, why he was chewing his clothes, why he jumps up and down when watching video games or television, why he doesn’t look me in the eye when we talk, why the ADHD medication has given us mixed results.  It’s also why he can’t navigate socially very well with his peers — other kids make him so excited that he doesn’t know how to behave around them.  Although he loves other kids, they get him so worked up that he often retreats into his own personal fantasy world — which is why he doesn’t realize when they aren’t playing with him anymore.  The fantasy world is also why he frequently interrupts classroom discussion and conversations with non sequiturs.  The heightened sensory input also affects his writing — holding a pencil is just darn uncomfortable.  (Imagine putting a pencil between your toes.  It would drive you crazy, right?)

It’s essentially a diagnosis of Extreme Social Awkwardness, for Jeffrey.

The good news is that Jeffrey’s condition is, on the autism spectrum, pretty mild.  He smiles, he loves physical contact, he isn’t picky about his clothing or food, and while his fondness for history is unusual, it isn’t as all-encompassing as it is for many Asperger kids’ obsessions.  (I highlighted it in my timeline, but Jeffrey has plenty of other interests beyond Egypt.  This one’s just darn persistent.)  If your experience with autistic kids comes from reading books like The Curious Incident of the Dog in the Night-Time or Parallel Play, throw it out the window.  A spectrum disorder means a lot of diversity.

If you suggest that the solution to Jeffrey’s problems is homeschooling or some kind of private tutoring, you’re wrong — the last thing he needs is to be taken away from other people.  If anything else, Jeffrey needs more opportunities to practice his social skills.  I’ve read that having Asperger’s is a lot like being in a foreign country — you speak the language, but you don’t get jokes, subtlety, social customs, etc. and this makes you reluctant to interact with anybody.  Immersion is the only way to overcome this.  In fact, many adults with Asperger’s enjoy living in exotic cultures (such as Japan or India) because their difficulty in grasping social norms is chalked up to being a foreigner, not to being “weird.”

The other interesting news is that my mom and I have realized that one of my brothers probably also has undiagnosed Asperger’s.  This is hopeful for me, since said brother is now a rather fabulous high school student with good grades and friends.  Many kids with Asperger’s grow out of it as they reach adulthood.  This gives me hope.

So: right now Jeffrey’s taking a Social Skills class with a non profit in town called the Children’s Center, where they practice basic things like giving good eye contact, speaking slowly enough for someone to understand you, and how to take turns with asking/listening. We’re still waiting for occupational therapy to get started.  And my reservoir of patience for Jeffrey has just been refilled.  Honestly, it’s a relief to get a name, a diagnosis to something that has been otherwise incomprehensible and frustrating.

In the meanwhile, the people who glare at Jeffrey during church services (and sometimes move our church bags to a different pew so they don’t have to sit next to us) can donate money to Asperger’s research and leave us otherwise alone.

Yes, you read that last sentence correctly.

Also, the brother-in-law who once joked to me that he “hopes he never has a kid like Jeffrey” can make a SIZEABLE donation to said institution for Asperger’s research.  And then imagine what life would be like if I had some kind of long-range slapping device.

Those of you who know and love Jeffrey, and see his sweetness and goodness underneath his mountain of problems, who show him patience and compassion despite the high-energy quirkiness, thank you, thank you, thank you.  I’ll be needing your help from here on out.

15 thoughts on “Your Questions Answered! Kind of!

  1. This must be a very hard time for your family, but then, it sounds like there have been challenges from the beginning. I work with children on the Autism spectrum on a daily basis in the education system, and I love those little kiddos. If you ever have any questions, or need any help along the way, don’t hesitate to shoot me an email, okay?

  2. Hooray for your journey coming to a place that is workable. I am so excited for Jeffrey, actually, to be able to get the coaching and things he needs (and seems to want).

    Some things you wrote (like Jeffrey’s symptoms) seem all to familiar to me. Perhaps this is why people said Caleb has Asperger’s? Anyway, I found solace here:

    and here:

    and generally on SENG and Hoagie’s Gifted….there are so many resources to help you with the greatnesses as well as the quirks of Jeffrey.

    Apparently MANY children whose IQs are over 170 (like it bet Jeffrey’s is) are so hyper-sensitive as to be disabled by it, can’t stand to handwrite ANYTHING (that’s Caleb), do things like memorize every detail of history but can’t learn to tie their shoes–to the point that those are all commonalities and jokes among moms of the profoundly gifted in their communities online. Most of them follow Asperger’s research VERY closely, too.

    My cousin has Asperger’s. He’s a functioning adult, financial genius, happily married, finished college…he’s still “weird,” but he has a happy and great life. Had he the help Jeffrey’s getting now, I can only imagine how “normal” he would be!

    Hugs for you all!

  3. I wonder if he’d like to see some of the photos from the trip I was able to take to Egypt and Israel. I could email a few of them to you (when I get back from my daughter’s–the baby came today–Yay!), if you’d like, and you could show them to him on your computer.

    What other periods of history is he interested in? I was fascinated by Jack the Ripper a while ago (well, I still am), but I don’t know if you’d want me talking to him about that.

    I’m fascinated by English kings, World War I, and a bunch of other stuff.

    I also have some STAR WARS (and STAR TREK) Christmas ornaments, and if I put them on my tree this year, maybe he can come over and see them?

  4. Oh, and thanks for answering the questions. It might not hurt to let people at church know–they’ve been very good about people with extra challenges, when they’ve known they were extra challenges and not just “boys will be boys.” I think Mary Lou Andrews and Judy Watkins were before your time.

  5. Brooke, I am so relieved to hear that you are getting answers and the help that both you and Jeffrey need. Jeffrey is a wonderful, sweet kid (I wish I was around you and your family more) and I’m so glad that he’s found some opportunities to help him flourish.


  6. What a hard journey to finally finding a conclusion. I don’t really know Jeffrey that well compared to many other people’s interactions, but I love him. He’s such a sweet and wonderful kid. So, amen to your comments about nasty comments or fellow congregants. I hope you can continue to find lots of good help for Jeffrey and lots of people who realize how great he is.

  7. Whoa — what an amazing group of friends I have!

    Matt — thanks for your offer of advice; I’ll keep that in mind when I need some info (which might be a while . . . right now I’m feeling bombarded). Honestly, one of the sweetest things you’ve done for him was to allow him to ask a question at your book signing. I always have to hold my breath when he wants to ask questions in similar situations, and am very happy his question was on-topic. You were good enough to take him seriously, and for that I thank you.

    Kathleen — Jack the Ripper would probably give him nightmares. 🙂 He can’t even sit through Toy Story (that kid who tortures the toys is scary!). He’s actually interested in any kind of history; since we’ve moved to Utah the pioneers have entered his realm. But they didn’t have as many swords as the Romans or Egyptians, so they’re still second bananas. In Pennsylvania we took him to Valley Forge, and he was obsessed with George Washington for a loooong time.

    He’d probably enjoy seeing Star Wars/Star Trek ornaments on a Christmas tree; but keep in mind that he’d want to touch everything, and throw in some spontaneous calisthenics as well if he gets excited. Your call. 🙂

  8. We love Jeffrey! Sorry this has been such a struggle, I can’t imagine. I am glad you are figuring everything out and getting answers to your questions. I have no experience in this area, but honestly I see so much potential in Jeffrey, I can’t imagine he won’t live a normal, happy life as he gets older. Anyway, let us know if there’s anything we can do to help.

  9. Wow, Brooke. What a road, but great to finally be able to understand him better. A lot of the things you mentioned sound like our Jack. He gets so excited during movies that he has to run out of the room. Not just because he’s scared– often because he likes it so much. We’ve wondered if he has some kind of sensory sensitivity thing. And he REALLY struggles with writing. So I’ll have to stay on top of it with him, too. Jeffrey couldn’t have been given a better mom to help him through it all. God chose you, and He believes in you.

  10. I love Jeffery. Thanks so much for sharing this with everyone. I’m glad that you are finding answers so you can have the tools you will want in raising your sweet, loving, active boy. Sorry that you have some lame-o people in your ward. You should just move back here!! …p.s. I really like my idea of you coming back 😀

    1. IF ONLY, KELLY! I wish I could just live here but somehow make it back to Pittsburgh every week for church. 🙂

  11. What a heart-bending and loving timeline. I’m looking forward to the story 10 and 20 years down the road. I believe “normal” is overrated. Jeffery is lucky to be surronded by so much empathy.

  12. Jeffery is in the best of hands. Yours and Brian’s. Sorry for all the tears. Our thoughts and prayers are with you.

  13. Why did I find this out on the blogosphere?? We love Jeffrey and will continue to enjoy his fantasy world with him and be amazed at his knowledge of Egypt and Star Wars 🙂 Jake’s 12-year-old nephew Jared (Gibber) has high functioning Autism as well.

    We’re excited to see everyone this Christmas. So much love.

    1. Sorry, Erica (I’m assuming that’s who wrote this, right?) — I guess I thought your mom would have let you know. You and Jake are amazing with Jeff (and the rest of our kids) and he loves you very much. Thanks, and we’re excited to see you at Christmas, too!

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