Well that’s… interesting

I am a youngest child. I grew up forever feeling persecuted that my brother got to… stay up later/go places I wasn’t allowed/watch movies that were forbidden/fill in the blank with any other life-or-death-desirable activity in a kid’s mind. I never saw him with more responsibilities than I had—therefore earning those special privileges—though that, too, is probably a perception heavily shaped by its passage through tween/teen Not-Fair-Colored glasses.

Of course, there were also rules in our family that were shaped by “because he’s a boy” or “because you’re a girl.” Different time, different place. There are no such gender rules for my kids, but I am sensitive to the siren song of But He/She Doesn’t Have To (or Gets To) And That’s Not Fair, so I try REALLY REALLY HARD to explain any such apparent unfairness in a way that will make the complainant understand that maybe it’s not as awful as they think.

For all his rigidity, Monkey is actually a pretty easy sell on the “here’s why she gets to and you don’t” party train. He protests, I explain, he either backs down or sort of harumphs his way out of the conversation, saying that he SUPPOSES I know best. No, it’s Chickadee who is the frequent recipient of the Let Me Tell You With Very Many Words Why You Are Being A Spoiled Brat Right Now lecture.

“It’s not FAIR!” she’s prone to wailing. “Monkey doesn’t have to [fill in the blank with some household responsibility].” And each time I will patiently recount for her the benefits of being 1) older and 2) neurotypical. She gets to stay up later. She is allowed to watch movies and TV shows he is not. She has a slew of privileges he not only doesn’t have yet, he may not have at her age, either. She has more responsibilities because she can handle them, but she also has a lot more latitude in what she gets to do. Sometimes I even say to her that “being neurotypical has its perks” to point out the ways in which Monkey is not getting nearly as much as she thinks he is.

But mostly I say, “This is the curse and blessing of being the oldest.” And then I tell her, solemnly, “With great privilege comes great responsibility.” (Sometimes I add, “Now stop whining and go do the dishes,” just for effect.)

I still can’t wrap my head around the fact that it’s May, that school is almost over for the year, that yes, the last 4-5 months have blurred together into a congealed ball of stress and sickness and pain and overall suckage. Chickadee’s life—beginning with the first days of Mystery Illness 2012 back in January—is certainly nothing like what I’m sure she pictured for herself before she got sick.

Being sick sucks. Being a teenager sucks. Being a sick teenager is the extra double super suckage buffet of Not Fair, and over the last few months we have watched her slowly unravel. Her ability to cope went right out the window with her long-lost health, and because we didn’t have anything else to do between hospitalizations and doctors’ appointment (HAHAHAHAHA I AM FUNNY!), we desperately tried to address her emotional needs alongside the rest of it.

She has a great therapist. She started anti-depressants, too. Look, full-grown adults are brought to the edge of their ability to function when faced with chronic illness; no one seemed too surprised to learn that OH HEY, this kid is having a hard time.

Over time, “because you’re the oldest” and “because you’re neurotypical” has given way—much to her chagrin—to “because you’re sick” and “because you have a doctor’s appointment today.” Guess what that is? Why, it’s Not Fair, of course.

Medication helped, and then it didn’t. Therapy helped, and then she decided her therapist is dumb. (For the record: Our joke is that any doctor she has to see is granted only three appointments to FIX HER ENTIRELY before Chickie decides they are stupid and useless. We have an entire cadre of stupid, useless doctors on her team whom I adore.)

Something began to niggle in the back of my head. It was almost drowned out by the “I HATE YOU!”s, but not quite. I listened. I discussed it with Otto, and with Chickie’s dad.

We found another doctor. Chickadee only had to see him a couple of times (first for a preliminary and then for a day of testing), so there wasn’t enough time to decide she hated him.

“How’d it go?” I asked, after.

“Fine. I guess,” she said.

We waited six excruciating weeks for the report. Six weeks during which her health dipped again, her attitude tanked, and everything—EVERYTHING—was somehow my fault. “YOU’RE SUPPOSED TO BE TAKING CARE OF ME!” she screamed, one night. “DO SOMETHING!” The fact that I’m neither a doctor nor a wizard was beside the point.

Yesterday was a bad day. A really, really bad day. We’d spent all day on doctors’ appointments in Atlanta the day before, and I ended up having to pull her from school for most of a second day for emergency appointments here, too. The “do we need to hospitalize again” conversation came up more than once, and I could feel her fiery glare of hatred trying to sear a hole through my face as she sat curled in a ball, insisting that she was not going back to the hospital, she would not go, FIND ANOTHER ANSWER, I’M NOT DOING THAT. (Apparently the food at the hospital is awful. Who knew?)

While walking out of one appointment at Ye Olde Office Parkke (no, it’s not really called that, but I would pay good money for someone to name their office park that, extra letters and swoopy Es and all), I got a voicemail that her report was ready. And that doctor was in the same office park where we already were. So I walked over and picked it up.

These reports are written in Verbose, you know, which thankfully is a language in which I’m fluent. We sat in the car and I scanned page after page, looking for the pertinent bits.

And there it was. “Findings consistent with the typical presentation of Asperger Syndrome in highly intelligent females.” Page after page explaining the many ways in which my baby’s giant brain and desire to fit in have allowed her to “fake it” for all these years, and the current set of stressors have simply overwhelmed and dismantled the many adaptations she often didn’t even realize she was making.

“What does it say?” she said, scanning my face as I read, fearing the worst.

“It says you have Asperger’s,” I said. We sat there, air conditioning flipping random bits of our hair on end, looking at each other over the sheaf of papers. “What do you think about that?” I finally asked.

“I dunno,” she said. But she looked pretty unhappy.

“It also says you have superior intellect,” I offered, by way of consolation.

The corners of her mouth twitched, ever so slightly. “Well DUH,” she said. We grinned at each other.

It doesn’t change anything, of course. Except that it changes everything. And except that we can add “crushing guilt over my frequent usage of ‘because you’re neurotypical and he’s not!’ as parenting justification” to my list of baggage. Um. Oops?

Girls on the spectrum present REALLY differently than boys. And I’m not an expert. And it’s not at all unusual for girls to be diagnosed a lot later—or fly under the radar entirely—because it’s harder to “see.” So the guilt isn’t necessary, not really. Still. When have I passed up a change to beat myself up?

It’s changing how we approach some stuff. I know it’s too early to call, but she seemed relieved. This morning she was cheerful. I asked if she was feeling better and she said she really, really was.

While Monkey ate his breakfast, Chickie finished and was gathering up her things before going outside for the bus. The kids were bantering back and forth—I can’t even remember about what—but it may have been the first time I’ve seen them getting along in months. Monkey was soaking it up like the first sunny day of spring; he has lost so much in the wake of all of this, too, and his adoration for his sister never once wavered, no matter how mean she was to him.

“Hey Monkey,” I said, from where I was packing lunches over at the counter. “Guess what the doctor said Chickadee has!”

He was immediately intrigued. She, however, just rolled her eyes and smirked at me. “What??” demanded Monkey.

I cocked an eyebrow at my daughter, a tacit “so are you okay with this?” question which she understood and gave a slight nod to, in spite of her shiny new label.

“She has Asperger’s!” I told him, the same way I’d announce that we’d just won the lottery.

Monkey took a sharp, astonished intake of breath, while Chickadee rolled her eyes and waited to see what he’d say. She didn’t have to wait long.

“Really??” he squeaked. We nodded. “COOL!” he said. He ran to her and threw his arms around her and her backpack. “Don’t GO, Chickie! You should totally come to Hippie School with me!”

She chuckled. “Yeah, that sounds pretty good, but I think I’ll just go to my school today.” I’m pretty sure she even hugged him back, a little, before disentangling and heading outside.

So, yeah. It turns out I am the proud mama of TWO awesome Aspies. Who doesn’t love a matched set?

88 Responses to “Well that’s… interesting”

  1. 1
    margaret May 2, 2012 at 8:30 am #

    Wow. Just wow. Presentation different for every single kid–not just boys and girls..if you beat yourself up, at least do it with an inflatable bat and not one made of oak. Answers are good…even if they aren’t the answers you were expecting. Hugs.

  2. 2
    Maria May 2, 2012 at 8:33 am #

    Holy shit, mama.

    I love your family so much.

  3. 3
    Debbi May 2, 2012 at 8:33 am #

    I just read an article a few weeks ago about how females tend to “fly under the radar” until they are older because girls have different social skills than boys so it isn’t as obvious. Wish I could find that article for you!!

    Monkeys reaction is just adorable!! They are lucky to have each other and to have you…you are a wonderful mama!!

  4. 4
    Beverly May 2, 2012 at 8:42 am #

    Huh. That is a twist, all right.

  5. 5
    Leandra May 2, 2012 at 8:43 am #

    Thirty lashes with a wet noodle!

    You know this is my secret fear, right? That even though she’s tested as “neurotypical” right now, that ultimately the same thing will happen with Punkin. That all of our attempts to mold her into whatever society wants are really hurting her and we don’t have any way to know. Oh for a crystal ball….

    Hugs to all of you…..

  6. 6
    Laura May 2, 2012 at 8:51 am #

    YAY!!! You know, this makes me ridiculously happy because it is finally something concrete, something tangible, something that can explain so many other things. I think this is really the first step on that road to happiness you have wanted for so long. But honestly, you have to stop hogging everything- first you got all the drama and now you get all the awesomeness? Share with the rest of us!! :)

  7. 7
    Kelly May 2, 2012 at 8:54 am #

    Hopefully the answer helps you start an upward trend – I have all of you in my heart, trying to send positive sparkly vibes.

    Big hugs to all

  8. 8
    Megan May 2, 2012 at 9:00 am #

    Guilt? WHAT GUILT?? Honey, you kept at it! You didn’t write her off as ‘just bratty’ or ‘just a tween’ or ‘just needs to pull up her socks and get with The Program As Written.’ You got her to a therapist and then another, you listened and you changed and you kept on pushing and in the end all that work and mama love pulled off a miracle and got an answer!

    I know the guilt, it comes in so many delightful flavours and colours, but in this case I think you can [try to] push it off, take a deep breath and pat yourself and Chickadee on the back for not giving up on each other.

    You – and your fab aspie pair – are amazing.

  9. 9
    Tracy May 2, 2012 at 9:04 am #

    WOW! I’m in complete shock. I would NOT have ever thought that but I’m with Laura on this….at least now, you know what you are dealing with…and also about hogging all the drama and awesomeness! You gotta stop doing that! ;)

  10. 10
    Julie May 2, 2012 at 9:05 am #

    Mir, I am so happy that you have a direction now to go with this! While somewhere under the skin this has to feel overwhelming, at least now you know where you are at. This is 75% of the battle sometimes.

    LOL – when you said now you had a matching set – I thought of two Aspie-bookends.

    I think now that Chickadee has a reason for why things have been so challenging for her lately, she’ll start to handle things better. This may also bring her and Monkey even closer.

    Wishing you all the best!!!

  11. 11
    Robyn May 2, 2012 at 9:08 am #

    OMG. I have goosebumps because my son who’s almost 10 was dx’d with Asperger’s 15 months ago. And we’re in the process of having my incredibly intelligent 12 year old daughter tested. Jr High has been horribly traumatic for her this year and it flnally clicked with me about a week ago that the social problems she’s having are exactly what her brother is experiencing. Even though we don’t have the formal dx yet, we’ve talked about it and she seems relieved to know that there might be a reason she doesn’t “get the stupid girls and their stupid conversations about boys.” LOL

    I’m so happy you have some answers and I hope that this helps Chickadee start on a new, awesome path to health and happiness.

  12. 12
    Melissa May 2, 2012 at 9:16 am #

    I am happy you got an answer…even if it doesn’t fix anything, at least now there’s a place to start understanding what is going on? And I agree with Megan, you DIDN’T ignore the feeling that something was amiss and write it off…so you are indeed the best mother ever.

  13. 13
    Jen H. May 2, 2012 at 9:16 am #

    I often wonder how my life would be different if I had been diagnosed as a teen instead of a 40-something. You know that Chickie will succeed in life. You just have the ability to give her additional skills to cope. You are amazing. And your family is amazing. I’m in awe!

  14. 14
    bryan May 2, 2012 at 9:19 am #

    As the wise commenter # 1 said, the only beatings allowed are with an inflatable baseball bat. If you need one, I have one to loan you, but I have to warn you that the highly ADD boychild LOVES to be beaten with it. It’s part of our afternoon routine. The aspie girl doesn’t mind much either.

    The diagnosis is just a tool, not a life crushing guilt inducer. I know you were already using Aspie Mom Coping Skills with Chickadee, but now you can use them with Even More Power. Plus isn’t it nice to have in writing that the issues you are facing are not because of poor parenting choices? (Although I did have a struggle this morning with the crushing guilt of “maybe I didn’t bond enough with my aspie” so I’m totally preaching to the choir.)

    And remember–when you have seen one Aspie, you’ve seen. . .one Aspie. PARTICULARLY since it presents SO differently between genders!

  15. 15
    Rachael May 2, 2012 at 9:28 am #

    Whoa. That one took me by surprise. But what about her not feeling well? How does this fix that? I guess my exhausted brain just can’t connect the two right now.

    Mir… my heart is overwhelmed for you. What an amazing mom you are; Otto is amazing just for loving all of you. Chickie and Monkey are just awesome period.

  16. 16
    victoria May 2, 2012 at 9:36 am #

    Wow. I have a 16 year old daughter and my 7 year old Aspie son. He’s been clearly identified; she I still wonder about. In one sentance: I understand that girls will `mimic” a personality type they see and adopt it as their own. In their cleverness to fit in, more so than the boys. I’m so glad you now all have the ‘answerr’ so long waited and hoped for! Really very happy for your whole family!
    (How did Asperger`s cause a physical upset in your daughter?- you don’t have to answer, I think I just have to re-read your post to answer myself)
    Happy Wednesday!!

  17. 17
    Amy @ Binkytowne May 2, 2012 at 9:38 am #

    You know what though, diagnosis or not, I can’t imagine that you would have treated her any differently or tried to help her through what was bothering/worrying/upsetting her in any other way before you got that piece of paper. I’m sure the techniques you used with monkey translated into your parenting with her too, whether you were aware of it or not, so don’t look back, just keep on keeping on.

    If I wanted to bring you ice cream and chocolate before, I want to bring you twice as much now.

  18. 18
    Mir May 2, 2012 at 9:38 am #

    Victoria, I think you misunderstood—this is not The Main Thing we’ve been dealing with, but it’s good info to have in the midst of it.

  19. 19
    deva May 2, 2012 at 9:38 am #

    You are an awesome mom – Chickadee and Monkey are so lucky they have you to be their awesomesauce mom. Because, two awesomesauce kids deserve to have a mom who is just as awesomesauce.

  20. 20
    el-e-e May 2, 2012 at 9:41 am #

    Aww, Mir. I’m so glad that both kids were happy this morning at breakfast. Your description of that moment was just heartwarming. I hope you’ll all be able to rest a bit from the mental gymnastics, and start down this new path with clarity and hope. You’re one super sweet family.

  21. 21
    Lucinda May 2, 2012 at 9:44 am #

    Wow. Didn’t see that coming but it kind of makes sense. I hope it gives her a sense of relief and allows her body to start healing.

    Also, for those random snarky comments (not many but a few) I’ve seen here over the years regarding her tantrums, I say “suck it!” Most of us knew what an awesome mama you’ve been to your kids but now it’s even clearer! You were driving blind and still came out amazing.

    Hope the second half of 2012 is the opposite of the first half. In other words, much improved.

  22. 22
    victoria May 2, 2012 at 9:47 am #

    OK- thank you Mir :)

  23. 23
    LH May 2, 2012 at 9:51 am #

    Wow,
    I was diagnosed at age 40 with ADD-Primarily Inattentive and yes girls do present differently than boys. I did not know that Asperger’s does also. It makes sense that she “flew under the radar” for so long. I know that although I was not thrilled with the Dx, looking back it sure does explain a lot. Especially about middle school, OMG middle school!
    It was hard and kids are mean and I lived in a small town. Things eased up in a larger High School with more kids and groups to hang with. I found my niche and she will too.

  24. 24
    Jamie May 2, 2012 at 9:58 am #

    Wow. I have no words. I’m certainly not up to speed on the “signs,” but I never would have suspected given how different Chickie and Monkey are. Wow.

  25. 25
    hawkeyejlp May 2, 2012 at 10:00 am #

    I’ve been wondering the same about my girl monkey.
    Thanks for this post, and the reminder about different presentation in girls.
    Hmmmm.

  26. 26
    parodie May 2, 2012 at 10:02 am #

    Oh wow. That’s quite the news. It sounds like this will help as you make adjustments and choices, which is the best outcome.
    And hooray for the love between siblings. What a lovely end for such complicated news. I’m feeling all mushy now. Lots of prayers and supportive thoughts for you and your family.

  27. 27
    Genevieve May 2, 2012 at 10:03 am #

    What Megan said. Abso-frickin-lutely what Megan said. You pushed and tried different things and persisted to get an answer to what was going on with Chickie besides the overwhelming physical stuff which you are also working hard on. You didn’t just put it down to side effects or trouble coping – you investigated, even when Chickie was sick of the docs. Good for you. You found an answer that will help deal with the emotional issues and help her feel better because you’ll know, or learn how, to address her Aspie needs.

    She’s already feeling better just from learning that, and so is Monkey. Awesome.

    You are marvelous, you know?

  28. 28
    Leslie May 2, 2012 at 10:04 am #

    Holy guacamole, Mir! I’m stunned.
    You know what? Maybe, just maybe, this might be the start of an upswing for you guys. I know this isn’t the big thing you have to deal with; however, I’m sure it does answer a lot of questions, and is hence a step in the right direction.
    OK, I’m going to go knock wood now, in case I just jinxed you guys.

  29. 29
    Kady May 2, 2012 at 10:10 am #

    Wow. Didn’t see that one coming. I simply cannot believe the year you are having. Hang in there!

  30. 30
    Mary Beth May 2, 2012 at 10:12 am #

    So happy for you that you finally have some answers. Wishing I knew you in “real life” so I could ask you so many questions. Every time I read one of your posts about Chickie I swear you are writing about my 12 year old daughter. She was diagnosed with anxiety disorder and put on meds this year which have helped tremendously, but now this post makes me question so many things. Sending you so many positive thoughts and prayers that someone soon can help you with Chickie’s medical problems so she can feel better.
    Oh – and I LOVED Monkey’s reaction to the news…made me cry!! You have awesome kids!!!!

  31. 31
    Arnebya May 2, 2012 at 10:19 am #

    There is a lot to be said for having a diagnosis, even if it’s not the Main Thing going on in the grand scheme of All the Things, you know? It’s a sense of relief, a sense of something tangible, something definite (?) that she can put her finger on. And sure, we will beat ourselves up over being the mom and wanting to have the answers. The not knowing, the lack of our receiving medical degrees and/or being gifted wizards is Not Fair. I’m just glad you were given even the tiniest bit of an answer to some part of all the somethingness. I hope the coming warmth (wait, how long has it been warm down there? We just hit a steady week of 80s (yay!) brings better days.

  32. 32
    Chuck May 2, 2012 at 10:25 am #

    Wow, that’s quite a shocker – totally does make sense, though. I hope that Chickadee’s mystery ailment improves and that you all have an awesome summer together.

  33. 33
    Aimee May 2, 2012 at 10:34 am #

    Wow. I love Monkey’s reaction so much, and I hope that knowing that Chickadee has Asperger’s too will help with some of this. I hope very much that you get an answer to the REST of what’s been bothering Chickie SOONEST.

  34. 34
    Karen R. May 2, 2012 at 10:35 am #

    Congratulations? Seriously, it is always good to know what you are dealing with. As the mother of an HFA woman, I am well aware that autism does present differently in males and females, with females often being able to hide it and remain undxed for years — if they are ever dxed. You are ahead of the game with a dx for The Amazing Chickadee before she hits adulthood.

    You may find that Chickadee settles down some if she accepts the dx and is able to stop struggling to fit in (if it has been a struggle for her). So things may improve — eventually.

  35. 35
    Tammy May 2, 2012 at 10:40 am #

    If I could ‘like’ Megan’s comment, I would, a thousand times over! I can understand Chickee’s relief… it’s nice to have *something* concrete that you can address…even when other avenues are still a huge mystery.

    Baby steps, Mir. And, Just Keep Swimming…

  36. 36
    Little Bird May 2, 2012 at 10:50 am #

    This is good news. No, really, it is. It means you ARE a good parent (as if that were ever even a question), it means she’s NOT a brat, it means she will get the help and support she didn’t really know she needed.
    I’d like to extend a hug to you, if that’s not too weird.

  37. 37
    Navhelowife May 2, 2012 at 11:05 am #

    You know what I love about this post? That being different, in Mir’s house, is totally fine. And totally supported. And that information is more important than being something you’re not.
    Hugs, and best wishes as always.

  38. 38
    Joanne May 2, 2012 at 11:07 am #

    So glad to hear that persistence pays off.
    My neice (just 13) has missed half of her school term due to debilitating migraines, and they cannot find a cause or a medicine that works. They have finally suggested a diagnosis – appt with a new specialist next week… maybe this one will have the answers.

    Tough times!

  39. 39
    Rachel May 2, 2012 at 11:08 am #

    Wow, also didn’t see that coming… probably because I only know you & your family through the internet. =) Hugs to you… good to have an answer for some questions instead of just more questions. Hoping they figure out some answers for the Main Thing soon too.

  40. 40
    Bob May 2, 2012 at 11:16 am #

    I too am breathing a bit of fresh air and am optimistic for you and Chickadee. Knowing why something is happening makes it so much easier to cope with – even if it doesn’t necessarily come with a pat solution to the problem.

  41. 41
    Natasha May 2, 2012 at 11:21 am #

    Wow. I am surprised, and not.

    Which it sounds like is the reaction for most of us here in your computer.

    I also believe that only good things can come from this. You’re a wonderful Mom, and you have great kids.

  42. 42
    Jennifer Joyner May 2, 2012 at 11:31 am #

    Whoa…I feel like II’ve been on a roller coaster following your story….what must it be like for you!!!

    All I can say is….I have such enormous respect for you, Mir, as a mother. You’ve had a hell of a journey and from where I sit, you have handled it with courage and grace. My hope is that things lighten up for you….you more than deserve a break!

    And…you’re incredibly generous to share this with your readers. You are helping a lot of people. Thank you.

  43. 43
    Fabs May 2, 2012 at 11:49 am #

    That is a shocker, but not really I guess. It will hopefully be easier to understand her behavior and I’m so glad she’s feeling better. I hope you can figure out what’s been making her sick, or maybe you know and I missed it? It’s hard keeping up with you and your fam! ha, ha. Hugs to all of you!!!

  44. 44
    TC May 2, 2012 at 11:50 am #

    Wow. And I’ll beat you up if you beat yourself up, so cut THAT shit out.

    But what does it MEAN for her? Accommodations at school? And does it affect treatment of the Mystery Illness at all?

    What was it that niggled, specifically, if you can say?

  45. 45
    liz May 2, 2012 at 11:58 am #

    I’m a little verklempt. I love your family.

  46. 46
    Kristine N May 2, 2012 at 12:01 pm #

    Wow….. Thinking of you guys…. At least it answers some of you questions. You are a great Mom and thanks for sharing…

  47. 47
    kapgaf May 2, 2012 at 12:27 pm #

    Relieved ? You should be. Drop the guilt RIGHT NOW you don’t need to be even more tired than you are and guilt is exhausting. Big smiles of sympathy should have reached you by now. But maybe you should change the name of your blog to ODTAA ?

  48. 48
    Ali May 2, 2012 at 12:31 pm #

    So, not that I am asking for anyone in particular, but is it possible to go 40 years or so as a highly intelligent female who was just written off as shy and quirky, but might really be an undiagnosed Aspie? It would explain a lot.

  49. 49
    {sue} May 2, 2012 at 12:31 pm #

    First off, I think you are both incredibly brave and generous to share this. Second, it may actually be the perfect time to learn this… before she starts high school. Third, I pray that this is the beginning of an upward swing. Because you all totally deserve some upward. Love to all of you!

  50. 50
    RuthWells May 2, 2012 at 12:39 pm #

    Wow, I didn’t see that one coming… But knowledge is power, yes? Sounds like you’re about to start a whole new chapter.

  51. 51
    SARA May 2, 2012 at 12:48 pm #

    Far being it from me to interrupt any Orgy of Self-Flagellation Via Mom-Guilt, but:

    1) you were able to recognize Chickie’s falling-apart was something other than age/hormones/illness, when any ONE of those things would be plenty to explain the meltdown.

    2) you did / are doing something about it

    3) the way you’ve approached everything with Monkey meant that Chickie’s reaction was not “Oh no, not ANOTHER THING WRONG WITH ME,” but one of relief.

    It seems like you pretty much knocked this one out of the park. You’re a Good Mom.

  52. 52
    Lisa May 2, 2012 at 1:25 pm #

    I know you’ve got your hands full and you’re getting a lot of IRL support and blog support, so I thought I’d just share something a little silly. When you wrote:

    “Being a sick teenager is the extra double super suckage buffet of Not Fair…”

    I read it as

    “Being a sick teenager is the extra double super *sausage* buffet of Not Fair…”

    and it made me giggle. I hope it makes you giggle too.

  53. 53
    Lara May 2, 2012 at 1:29 pm #

    Wow! That IS interesting. I am a little surprised and yet I’m not. You know what they say “hindsight is 20/20″ ;) I’m glad you have an explanation for the recent behaviour challenges. It’s always better to know what you are dealing with because then the resources become available as needed.

  54. 54
    Aly May 2, 2012 at 1:42 pm #

    Wow, yesterday must have been the day for verbose reports with unexpected (ish?) pertinent bits. Got me one of those yesterday too and now have an awesome aspie of my own! It wasn’t entirely unexpected although the original testing we were there for was because an MRI he had showing he had a brain abnormality….now that was unexpected. Here’s hoping the universe throws you a bone now and the next days and weeks bring peace or at least a plan for peace.

  55. 55
    Katie in MA May 2, 2012 at 2:02 pm #

    Chickie must be relieved to have an answer to so many of the things she has going on, even if the ‘why’ wasn’t necessarily an easy one. A matched set of the prettiest and the bestest – you’re so lucky to have each other!!

  56. 56
    Lynda M O May 2, 2012 at 2:33 pm #

    You are a great mom, Mir, and so pretty now that some of the tension has left your shoulders; it appears odd when your shoulders look like earmuffs. Lots of enlightening comments too; your blog reader-family ranks as one of the best on the Tubes. Happy for all that this dx will mean as Chickadee travels the path thru High School and University.

  57. 57
    divrchk May 2, 2012 at 2:43 pm #

    I’m so happy for your family to have a little piece of the puzzle put into place. Hopefully this will help you all navigate each other and what you have going on a little bit easier.

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    Sheila May 2, 2012 at 2:50 pm #

    Know what I think? I think Chickadee and Monkey might just grow up to become awesome teachers/therapists/leaders in their own version of Hippie School, helping out kids and their families for years to come. They certainly will have the insight to do so, although they can be whatever they choose to be, of course.

    I don’t know if you’re looking for Silver Linings (and I’m not even sure if there’s a cloud here), but I am glad you have at least some answers and a clearer picture in front of you. Again I say to you: with you as their Mama those kids will go far.

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    Jen May 2, 2012 at 2:58 pm #

    Holy hell. Aspie plus Illness From Hell plus Teenaged Angst plus XZYABC…poor kid. My God, Mir, my hat is off to you. I want to say I don’t know how you do it, but I know how you do it. One foot in front of the other, one breath at a time. Hugs to Chickie.

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    Kristy May 2, 2012 at 3:06 pm #

    I read your posts often but almost never comment. I’m so glad you have a partial answer about what might be going on with your Chickie! I obviously don’t know the exact circulmstances so this may not apply to you. But, I came down with a chronic immune system disease around age 13 and I struggled the most with my doctors not beliving/listening to me. I have a legitimate immune deficiency and it did not help my mental/physical state as a teenager for my doctors to whisper to my mother (who was thankfully as dedicated to finding answers as you are) that I would “grow out” of this. WRONG – I got better once I was actually diagnosed! So, if a particular doctor is not taking you/her seriously, listen to your gut and move on. And It sounds like you are already doing just that. If I can offer any help or advice to you from a former chronically ill teen’s perspective, feel free to email me!

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    Jan in Norman, OK May 2, 2012 at 3:15 pm #

    I was 58 before being diagnosed with ADHD. Just knowing that has lifted such a weight from my spirit. Here’s wishing Chickadee a similar experience.

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    My Kids Mom May 2, 2012 at 3:19 pm #

    I just have to wonder… how many of us parents would “present with symptoms of Asperger’s?”

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    diane May 2, 2012 at 3:36 pm #

    So, how does one end up with two Aspie children? I’m not trying to be a jerk or cast blame, I’m really trying to learn about this. There seems to be such an uptick these days and everything from vaccines to the ozone layer are getting the blame. Is it genetic, or just the luck of the universe?
    On a more caring note, I am happy this will (hopefully) help. Seriously, as I read your posts I remember being 15, a girl who hit puberty at 10, who was awful and willful and I can’t even imagine what I would have been if I’d had a major illness on top of it all. For what it’s worth, though, the willfullness has served me well in life. ;)

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    Little Bird May 2, 2012 at 4:25 pm #

    I’m not so sure there’s an uptick in anything except the recognition of what’s always been there. I wasn’t diagnosed until I was 26, but all the signs were there.

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    Lady M May 2, 2012 at 4:42 pm #

    It’s never simple, is it. I hope that this is an upturn in down all the health issues go. Best wishes for you and the kiddos (and Otto!)

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    Jessica (the celt) May 2, 2012 at 5:36 pm #

    In the end, just knowing why is a huge help in going forward in a constructive manner. No beatings of anyone allowed, especially yourself. Aren’t you the one who taught me “It worked until it didn’t”? Well, it worked until it didn’t, Mir. And now you’re on a new, different path of discovery that you will rock just as much as you always do. Rock on! (Imagine that last exclamation in the voice of Marcelle the Shell with Shoes on, if you will.)

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    Jeanie May 2, 2012 at 6:10 pm #

    I’m truly not trying to make light of the situation, but at least you now know what the problem is. I’m sure everything will work out now that you have the diagnosis. And just for the record? I think you’re a very wise person and go way above and beyond for your two lovely children.

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    Tara May 2, 2012 at 6:37 pm #

    I read this quickly while I was at work and I was floored, but didn’t want to comment until I had a chance to read it again at home where I could concentrate on the details. I’m still floored. When that little niggling thought popped in your head and you talked to Otto and her dad, did you already suspect Asperger’s, or something similar? You both took the news with such grace. Was it a relief? Are you scared? What happens now?

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    Mir May 2, 2012 at 6:53 pm #

    I was starting to suspect Asperger’s, Tara. Some of her behavior under this prolonged, extreme stress was starting to look… familiar. So the report wasn’t a surprise, and yes, I think it’s kind of a relief just to know (for her, and for us).

    This diagnosis is only a footnote in the current medical saga; while I’m glad we know and it will change a few minor things, unfortunately we are still dealing with managing a somewhat unpredictable chronic illness, and the priority has always been (and will continue to be) keeping her physically healthy enough that we have the luxury of worrying about coping skills. Heh.

    Mostly I think that in the midst of this month after month “maybe it’s this, maybe it’s that, let’s try this other thing” medical rodeo, it was nice to 1) know something for sure and 2) know that it isn’t bad.

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    Bryan May 2, 2012 at 7:50 pm #

    @ Ali #48: I diagnosed myself when I started reading everything I could about Asperger’s because of my daughter’s diagnosis. At the most, I was 36 when I realized. . .hey, that’s me! So, yes, diagnosis in your 40s is possible. And even though the Dr. Asperger described it in the 1940s or so, the diagnosis didn’t get added to the DSM-IV (Big Book of Mental Health Diagnosis Codes) until 1994, and for several years after that it was thought to be a Boys Only diagnosis. So no one would have thought that the incredibly intelligent shy & quirky girl had it until very recently.

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    Jen B May 2, 2012 at 8:48 pm #

    Welcome to the club! Evenly matched set & all… I’m at 2 outta 3, and lately have been wondering about *my* “Neurotypical” child.. wondering quite a lot, actually.

    Your kids have the best mama in the world….

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    Emily May 2, 2012 at 9:49 pm #

    I hope this little key helps unlock a bigger door to your Chickadee’s overall health. As a chronically ill teenager, I can understand the suckage. And I wish I could go back in time and tell my mom she was a SAINT for putting up with me. Whatever keys are or aren’t in your pocket, you’re doing an amazing job, Mir!

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    Heather May 2, 2012 at 10:58 pm #

    Oh wow, so that’s another great big helping of challenging for your family! At least that part of it is something somewhat familiar! Continuing to think of and pray for you and yours.

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    Cele May 2, 2012 at 11:09 pm #

    Who would ever have thougth an Aspie diagnosis was a prize, but I love Monkey’s response and Chickie’s acceptance. I think to have a diagnosis must be a relief. And really, being special and unique is much better than being neurotypical. You go girl.

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    brigitte May 3, 2012 at 7:09 am #

    Well, I hope Chickie is justifiably proud that her giant intellect helped her develop coping skills so well (you know, when she’s NOT horribly ill, anyway).

    I’m glad your family is already so well-versed on Asperger’s, that this is much more of a YAY! than an “OMG, not another.” At least I see it that way. :-)

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    Karen May 3, 2012 at 10:12 am #

    I’m floored.

    I know so little about Aspergers. But clearly, Aspies are brilliant children, the only one I know besides your two is definitely a genius level thinker. He’s graduating college this year, going to do something wonderful with his life after a very difficult transistion period. I know yours will shine through, they’ve got YOU!

    Just take care of YOU in all this, Mir.. so they DO have YOU. Just sayin.

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    Viviane May 3, 2012 at 11:27 am #

    This must be my first comment on this site, although I have been reading since before you married Otto (long time ago…). That is a big piece of news. But what surprised me too is that you learn the dx in your car, reading a report. Is this the American way of delivering news ?
    Anyway, it does not seem to shock you, so it must be me. Big hugs to you and your family.

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    Heather May 3, 2012 at 12:44 pm #

    Your kids could NOT have a better mother :D

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    Heather May 3, 2012 at 1:12 pm #

    Oh Mir,

    You are EVEN MORE my hero. You helped me SO much when I was trying to figure out my daughter’s sensory stuff, 5 years ago (I can’t get over the flying time does) when Monkey was just starting the diagnostic path. I have very often suspected Aspergers for her as well, but she changed so much with the sensory input and kind of blossomed into a more normalized looking girl. Plus, our OT and I kind of felt like you: it would change everything, and yet not change anything at all. I have always seen striking similarities between Chickie and my Little Miss, and as we’re approaching middle school, those nigglings have begun to well up in me again – prior to reading this. She’s identified as ‘talented and gifted’ and the behavior…especially as we try to discuss things that are emotionally charged, or under stress, just strikes me as odd still. (Her BFF recently spoke out about someone who’d sexually abused her, and in trying to talk about it with my girl, I am seeing some of the social difficulty). It may be, it may not be. We’ll see.

    Thanks for sharing though, you shine light that you may not realize with the things you share.

    (hugs) and prayers re: her continued physical ailments – I sure hope that you get some answers sooner rather than later.

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    Susan May 3, 2012 at 3:22 pm #

    It is always helpful to have an explanation. Plus, given that she has been coping so well up until everything fell apart, it seems like knowing what is happening should help her to cope some–she has skills to cope, and this added information will help her to know what the struggle is, if that makes sense.

    But what I still want to know is–was this Dr. Zebra?

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    Becky M. May 3, 2012 at 6:18 pm #

    I can testify to the feeling of relief, having been diagnosed with ADD when I was 19. (And actually I still wonder if I might be on the autistic spectrum. The two can and often do coincide.) Sending you all best wishes.

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    Another Dawn May 3, 2012 at 6:42 pm #

    Well. Isn’t it just? Holy frap! Who knew? Other than you… because we mothers ALWAYS know first. At least it gives you some idea of how to help for some things. I hope they get her illness figured out soon.

    I love Monkey’s reaction!

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    Daisy May 3, 2012 at 7:46 pm #

    Wow. My mother sometimes wonders if she’s an Aspie. She is extremely intelligent, brilliant memory, and more. If it runs in families (which it can, as you know), she and Amigo are more alike than they know.

    She and Chickie should have a talk.

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    Amy May 3, 2012 at 9:26 pm #

    It can be SUCH a relief to have an explanation for things that are out of your control.

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    Laurie May 3, 2012 at 10:00 pm #

    It must be a relief to get some answers. I’ve been doing a lot of research lately on the gut/brain connection and wanted to share in case it might help you. Not sure if you’ve heard of the GAPS diet or the Weston A Price foundation but there are a lot of things that can happen when you have “gut” issues, that affect you psychologically and physically. Just thought I’d throw it out there as I know it’s been difficult trying to figure out what is wrong. Hoping you find some answers soon to all of the things that you’ve been dealing with.

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    Lacey May 4, 2012 at 10:01 am #

    Wow, did you have a notion this would be the diagnosis? It hadn’t crossed my mind at all, I have to admit. You know, cause I know so much about your family from the blog, lol.

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    Chris May 4, 2012 at 12:03 pm #

    I am not sure what to add with this news. I guess the most important thing is that you pushed for information that will help you and Chickie better cope with the rest of the sucky/teenage things going on right now.

    And if it not too sappy for you, you inspire me to try to be a better mom to my own two – matched set or not.

    Here is to another internet hoping this is the start of the upturn….

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    Liza May 4, 2012 at 8:27 pm #

    *hugs*

    A diagnosis of *something* that makes you say, “oh, you know, that makes a lot of sense,” seems like a good thing.

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