Hush, Baby

To recap: Monkey had to leave his social skills group last week, but this week he was allowed to return for the last session. There were apologies all around and he made a special effort to play nicely with the kid he clobbered last week, and as it was the wrap-up and party I think we were all happy to be able to end on a high note. But all was not sunshine and rainbows; he did end up under a table for part of the time, demanding that his therapist “just please make him shut up” (referencing a chatty kid who was getting on his nerves), and although SuperAspieDoc assured me it was fine and he handled it well—”He didn’t get violent! He asked for help!”—it only added to the growing knot of fear in the pit of my stomach.

We used to say that these episodes were so unlike him. More and more, the hyper-irritability and bursts of aggression ARE like him. Crowding out the clearer parts of him; dulling the brighter ones.

We still don’t know what we’re doing about school, with just a week left before classes start. I said to SuperAspieDoc “I know you can’t tell us what to do, but I kind of wish you would just tell us what to do.” And she acknowledged that she can’t make that choice for us, but did say she thinks it’s time to reevaluate his medications.

I know a lot of people who are anti-meds, and even more who are anti-meds when it comes to kids. I’m not interested in debating it, because I’m pretty sure medication has flat-out saved my child’s life. We are obviously pro-medication. Monkey has been medicated for years, with varying degrees of efficacy.

The problem with psychiatric meds is that it’s an art as much as a science. Things that work today might stop working a year from now; Monkey is constantly growing and changing; and there are never any guarantees when we put him on something new that it’s going to work at all. To top off THAT pile of awesomeness, his psychiatrist’s office is run with slightly less efficiency than a crackhouse. We have never had to wait there for less than half an hour, and some days—like today!—we wait for closer to two hours. It’s maddening. Monkey is always on edge by the time we see the doctor, and truthfully, so am I.

So the discussion began: Here is what we’re seeing. These are the behaviors we’re not having any success controlling through therapy and associated behavior-shaping efforts. Then the talk about what he’s currently taking—could their previous efficacy be waning?—and what we’ve tried before, because we actually did try a stronger class of drug briefly with scary results back in the winter.

Otto and I had our say. And then the doctor turned to Monkey, who was looking, truth be told, decidedly pissed.

“Anything you want to add?”

“No.” Monkey stared at his lap. I murmured something to him about how I know he doesn’t like to rehash times when he’s lost control, that I know it makes him feel sad and ashamed, but that we’re only talking about it to try to help him. He continued looking down.

“Is there anything you want to be different, Monkey?” I prodded.

“I don’t like it when I’m out of control,” he finally muttered. I looked at the doc, who decided to take a different angle.

“Monkey, do you feel sad sometimes?” he asked him. “I mean, times besides when you have these incidents? Do you ever feel sad without knowing why?”

Monkey shifted his weight, next to me on the office couch, and I instinctively patted his knee. “At night,” he said, finally looking up. “I’m really sad when I go to bed a lot. I stare at the ceiling.”

“How sad?” the doc pressed.

“Sometimes when I’m lying there I cry. I don’t know why, though.”

My chest seized. He’s lying there in the dark, crying? While we’re downstairs, unaware? I turned to Otto, whose own look of shock and unhappiness must’ve mirrored my own. How did I not know this? How did Monkey not tell us??

We finished out the appointment. We left with new prescriptions, a new plan, a hope that we can get him to a better place.

As Otto drove us to the pharmacy, Monkey sank back into the book he was reading.

“Hey, honey?” I had to call his name and tap his knee before he realized I was talking to him. “Put your book down for a minute, please. Monkey, do you know that if you’re sad at night—or any time—you can come to us? If you’re supposed to be sleeping and you’re just lying there feeling sad, please come get me. I’ll come sit with you or snuggle or whatever you need.” He nodded. I suddenly realized why that might not have occurred to him. “I won’t be mad if you’re up past your bedtime, if that’s why, sweetie. Please don’t think you have to be sad all alone.” He nodded again, the matter closed, and picked up his book.

Monkey was a colicky baby, and I spent countless nights pacing the floor with him, whispering “Hush, Baby, it’s okay. Mama’s here. It’s okay, Baby. Shhhhhh. Hush.” He still cried. I felt so helpless and inept, night after night.

How is it possible that eleven years later I feel like I’m still pacing the floor with him, pleading with him to be okay? Only now instead of jiggling him just so, I have to pick a school and make him take pills and get him to a million doctors’ appointments he hates AND pretend I know what I’m doing.

Not. Fair.

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82 Responses to “Hush, Baby”

  1. 1
    Heather Cook July 28, 2011 at 4:02 pm #

    Wah. Now I’m crying.

    I feel for you… we are going through some things with my son and … it’s just so HARD … I know what it’s like to want someone to tell you what to do. I wish I wasn’t in charge sometimes…

  2. 2
    Kathy July 28, 2011 at 4:08 pm #

    My heart breaks for Monkey and you. I can only imagine how hard this is. We are struggling with meds/no meds/what meds? For our ADHD/ODD son and it is so hard to know what to do and you worry so much for them. I hope the new meds are effective without the dreaded side effects. Hang in there.

  3. 3
    Leandra July 28, 2011 at 4:09 pm #

    Can I just say that after sitting in the psychiatrist’s office today rocking my own still sort of little one, that this post particularly hits home.

    {{hugs}} I hope it gets better for all of you soon. I wish I could fix it for you — heck, for all of us.

  4. 4
    elz July 28, 2011 at 4:10 pm #

    The image of him lying in his bed crying all alone made me cry. How I wish we could help you make it better.

    Siliver lining- I have wanted to tell LOTS of people, “Can you please make him/her shut up.” So, go Monkey for saying what we all want to say.

  5. 5
    Carmen July 28, 2011 at 4:11 pm #

    I’m so so sorry, Mir. I’m going through the almost exact scenario here in my family and it just flat out sucks.

  6. 6
    Heather July 28, 2011 at 4:11 pm #

    I know this feeling. My son is going to have to change meds next week. I tried the non-med route for a long time and all it did was make him suffer. When he was first medicated he said, “Thanks Mom, this is so much better.” It broke my heart that I hadn’t tried them sooner. Now we are at a crossroads again, starting a new school (junior high) and the meds not working the way they should any longer. It is a struggle for him and because of that a struggle for myself. It breaks my heart when he seems sad and when I ask he has no idea why. I wish for him that he didn’t have to experience any of this. Good luck to you and your monkey. I pray that his journey will become less of a struggle.

  7. 7
    Lindy July 28, 2011 at 4:14 pm #

    This made me cry. I think because I can empathize with you, or sympathize, or something, to some degree. At 25, we’ve FINALLY got my psych meds straightened out enough I can almost lead a normal life. Almost. (And just so you know, I think your husband and his classes were probably the only reason I didn’t drop out of college entirely and one of the reasons I was finally able to get enough courage and self worth to get away from my abusive boyfriend. I don’t think I ever told him that. He’s a good teacher. Those people at UGA who are actually supposed to help people like me, they’re useless). My younger brother hasn’t been so lucky. He’s been in and out of treatment facilities all summer, can’t hold down a job and it looks like it’s going to take him even longer to finish school than I did. I have to play the middle man in between him and my parents, because he won’t tell them anything because he’s afraid he’ll make mom sad, and he’ll worry her, because he’s the baby and it’s her gene line who gave us our uh, specialness. It’s so hard. And it scares the shit out of me that I might have passed my shit onto my son. It brings me a little relief to know at least I know what to look for, so maybe I can see it and help him later if he needs it. I don’t know what the hell I’d do if I were in your shoes and dealing with something completely new. I guess you just gotta keep on keepin on, ya know?

  8. 8
    ememby July 28, 2011 at 4:16 pm #

    Not fair, indeed! My heart goes out to you and breaks for you at the same time. I’ll keep you in my thoughts and prayers.
    Despite how trying it is to have kids aged 2.5 and 5, I know the harder times are still to come when I have to know (or pretend to know) what I’m doing as we navigate the path to adulthood with our kids.

  9. 9
    agirlandaboy July 28, 2011 at 4:16 pm #

    Oof. FWIW, I think you’re doing a great job.

  10. 10
    MomCat July 28, 2011 at 4:17 pm #

    So sad. I’m sorry you are all facing these hard times. My heart goes out to you.

  11. 11
    Tenessa July 28, 2011 at 4:17 pm #

    My Aspie was a very colicky baby as well. I wonder if there is a correlation? For my baby, I always felt it was sensory in origin, all that crying. Sometimes the crying jags would be shorter if I dimmed all the lights, eliminated as many unnecessary sounds as possible and paced around the house holding him face down on my arm, with a little jiggle motion. Sometimes that worked. Sometimes water hotter than you’d think in a bath with lavender in the dark was the only thing that helped. And sometimes? Sometimes I had to just put him in his bed, shut the door, go into my room, shut the door, and cry.

    To this day, I utilize the shut myself in my room and cry routine when things get to be too much to handle.

    We haven’t chosen meds in our quest to help Chi deal with a world ill equipped to handle him, but I most assuredly think you should do what is best for your child. I wish I could hug your neck. I know from experience, sometimes you need that. **hugs**

  12. 12
    Karen R July 28, 2011 at 4:29 pm #

    Non-creepy hugs for all of you. I really hope that this medication does the trick.

    My daughter tends to assume that if she knows something, or something is happening to her, or she is feeling a certain way, I will automatically know about it. Which just adds to how awful I feel when I do finally find out what is going on, because she assumes that I know and whatever is going on is okay with me.

    So, positive vibes that this med helps, with no bad side effects.

  13. 13
    Victoria July 28, 2011 at 4:34 pm #

    Re: the frequency of his outbursts – this is really common among Aspie/HFA kids during puberty. 7th grade was really rough for my son — but so much better after a year! Hang in there!

  14. 14
    Natasha July 28, 2011 at 4:44 pm #

    All I can offer is a whole heaping helping of good vibes for you and yours.

    And also that knowledge that our schools start EVEN EARLIER than yours! My baby hits kindergarten on Tuesday. I’d kill for another week right about now.

    ((hugs))

  15. 15
    victoria July 28, 2011 at 4:47 pm #

    Hi!
    I’d comment more frequently, I’m just too busy, most days!
    Response number 12……funny, I have a 15 year old daughter, it’s like you were describing ‘her’. We’re going to get her evaluated in the fall. We only began to wonder about her, because her 6 year old brother has been diagnosed last winter with Asperger’.s We tried day camp this summer…….it lasted a week…….
    I don’t know what to say, I feel everything you’re going through, because I’m living it with my son. I’m in an isolated location (middle Quebec) so we really have no choices in Doctors, or schools……one plus is that the school he’s in is small.
    Currently, he is still med free, but in the future…….
    I feel for your son, under the table…..looking for isolation. What does the future hold for our kids.
    Sorry, I’m on a down mode here….sorry about that.
    Well, I’m very happy when I do get to read your blog, I love your writing style, and what you are relating.
    Many thanks!
    Er, I have hope for our children, especially in such able hands!

  16. 16
    Deirdre July 28, 2011 at 4:48 pm #

    Definitely not fair. I have no words of wisdom because my struggles with my daughter are very different, but I hope for all of you that you find meds that work well for him, for a long time. And many {{{hugs}}} to you.

  17. 17
    Jamie July 28, 2011 at 4:50 pm #

    This is probably going to sound awful and I don’t mean it to, but this sort of agony that you are going through each and every hour of every day makes me take stock of the “tough” times that I have with my own kids. I think I need to slap myself sometimes for thinking my kids are acting awfully when I am hardly dealing with the challenges you are. Yes, we all have our challenges, I get that, but sometimes we have to remind ourselves that there are tougher ones out there.

    Hugs to you and yours Mir! I want to be as strong a mother as you!

  18. 18
    victoria July 28, 2011 at 4:52 pm #

    It’s OK, JAmie (number 17)

  19. 19
    Lise July 28, 2011 at 4:54 pm #

    I’m sorry. I’m sorry that Monkey has to go through this. I’m sorry that you and Otto have to go through this. But I’m glad that Monkey has a mama who was willing and able to walk the floors with him when he was a colicky baby, and who is willing and able to keep working to find the help he needs now. Life would be much worse for him if he had parents who were without resources, or without knowledge, or who were just plain unable to cope. Hugs to all of you.

  20. 20
    Sherri July 28, 2011 at 4:58 pm #

    I relate more than you know. Thank you for sharing with us. Many of us are in a similar situation but so affraid to talk about it. Thank you for being our voice. You are a fantastic mom!

  21. 21
    Katie in MA July 28, 2011 at 5:06 pm #

    I think it works on grown-ups, too. Hush, our friend, it’s okay. We’re all here. We can’t fix it, but we’re all here, trying to make it a little bit better, a little bit easier.

  22. 22
    ramblin red July 28, 2011 at 5:06 pm #

    Mir,

    I feel this. Felt this way so much when my dd was first.diagnosed with sensory.dysfunctions, and I just wish that things would have gotten easier for you (as they did with my dd) as time went on. Instead its just still hard. Hugs to you.

  23. 23
    Beth R July 28, 2011 at 5:11 pm #

    Tears. I know what it’s like to lie there awake and sad, except I started doing it as an adult. All I want to do is reach through the screen and give all of you a big hug, especially Monkey, and let him know he’s not alone.

    And I’m so glad you’re trying another medication; wish there was another sign that it’s time to try a new one besides the realization that it’s just not working any more. A little beep like hearing aids give when it’s almost time for a new battery would be great!

  24. 24
    Caty July 28, 2011 at 5:12 pm #

    Sucker punch, eh? I felt it just reading so I know how breathless you had to have been/are. Huge hugs.

  25. 25
    paige July 28, 2011 at 5:16 pm #

    Not fair at all. This journey with kids and psychiatric meds is hard. It gets a little easier when they’re old enough to really articulate well to doctors what they feel and as soon as they can realistically be somewhat responsible for tracking their own meds.

    However, now we’re dealing with a 19 year old who’s not quite old enough or well enough to be away at college or on his own but who wants to just be normal, dammit.

    All I can say is keep talking to Monkey, keep the lines of communication open. As long as you guys can talk to each other, you’ll all muddle through. We are muddling, but at least the family is muddling together. Does your area have an alternative middle school?

  26. 26
    liz July 28, 2011 at 5:22 pm #

    (((Mir))) (((Monkey)))

  27. 27
    Lissa July 28, 2011 at 5:40 pm #

    It’s not fair at all. Just know – you are not alone. Monkey is not alone.

    You are an amazing mother and he is so lucky to have you in his corner.

  28. 28
    Christina July 28, 2011 at 5:41 pm #

    Oh honey, I can so relate to this right now. We are doing the try this med, try that med thing right now, finally resorting to a higher class of drugs out of desperation. You can be as anti-meds as you want, but when it is your kid being affected, you reach a point where you will try anything. Someone recommended hypnotism to me – I asked for a reference!

    Take a deep breath, hug your husband and kids, and know that you are always doing the best you can.

  29. 29
    Jodie July 28, 2011 at 5:49 pm #

    Oh Mir. Oh my. This just got me today.

    I am so, so very sorry for how you are feeling. And for Monkey.

    You’ll get through this awful road. Both of you will. And in the mean time, I know I am here sending you every ounce of energy I can to help you get through the long night.

  30. 30
    Bob July 28, 2011 at 5:53 pm #

    You have Monkey and he has you for a reason – you were destined to come together. Only you have what he needs. Take what solace you can that no one else can do for him what you can.

  31. 31
    Mandee July 28, 2011 at 6:00 pm #

    Here with you – pacing and rooting for that sweet boy of yours.

  32. 32
    Christine July 28, 2011 at 6:08 pm #

    He could be starting to experience the hormone surges of adolescence. That’s hard for any kid, but doubly so for one who has to work harder to stay in equilibrium. I hope the new meds will help.

  33. 33
    Angela July 28, 2011 at 6:17 pm #

    My heart goes out to you, Monkey and the rest of your family. It’s obvious you all are doing your best and that’s awfully hard to do without a road map for the “right” thing to do.

    I put up with a long waiting room wait to see a special doctor (he’s awesome, and the only doctor I have ever known to apologize for said long wait!!) My first trick is to try to get the first appointment of the morning or the first after lunch. Barring that, I have taken to calling before the appointment to see if he’s running on time or not. It would be lovely if you could wait at home or at a nearby cafe, rather than in a waiting room or exam room.

  34. 34
    s July 28, 2011 at 6:42 pm #

    is there some sort of options surrounding the middle school decision – some middleground that will get you and Monkey the benefits you are seeking from public school while also giving you both some less pressure cooker time in the homeschooling environment as well? Maybe half days or 3x week supplemented/offset by in home schooling by a tutor or independent study or something?

    Not sure if its any consolation, but I have a pit in my stomach sometimes thinking about middle school and my kids – I can see my daughter soaring like Chickie and one of my boys crashing and burning, but fortunately I have a few years until I face that with him and I’ll just do my best to get us to a good place before he makes that leap.

    as always, thanks for sharing the good, the bad and the ugly – it helps and I hope in some way you feel the good vibes coming back at you all.

  35. 35
    Stephanie July 28, 2011 at 6:47 pm #

    I’m so sorry that you have to go through this with Monkey, Mir. It really is unfair. For you AND, even moreso, for Monkey. He’s always had so much on his plate. Some people seem to have so much more struggle and pain than others. I sure wish there was some sort fairness “scale”…you could weigh your “s#@t” and, once it weighed enough, you got a break and it was someone else’s turn.

  36. 36
    TC July 28, 2011 at 7:00 pm #

    It WILL be OK. It’s just damnably hard getting from here (not so obviously OK) to there. Or to know what OK will look like. Or whether it will be the kind of OK you want it to be. That’s the hardest part of all, I think.

    It isn’t fair, at all, but it will be OK.

  37. 37
    Navhelowife July 28, 2011 at 7:06 pm #

    Thinking of you and your family. And hoping for some relief for you and Monkey.

  38. 38
    Karen July 28, 2011 at 7:07 pm #

    You’re an awesome mother and Otto is such a loving man. It will be his greatest asset.

  39. 39
    Kathy July 28, 2011 at 7:10 pm #

    Wow, Mir … when I read your post I cried. Then, I read the comments and spent another 1/2 hour crying. You are certainly not alone, girl, just like Monkey isn’t alone either! It’s so tough for all of us to reinvent the wheel with regard to our own children and their issues and meds … and it is so wonderful to be able to see that there are others who are experiencing the same maddening, crazy, ridiculous things that we are. Thank you for putting yourself, and Monkey (and Otto and Chickadee, too!) out there for all to see. You make us laugh and you make us cry … and both are SO necessary!!

    Love you, girl!!
    Kathy

  40. 40
    Mom24@4evermom July 28, 2011 at 7:12 pm #

    My heart just aches for you and your Monkey. Last week I found my little (well not SO little, he’s eleven) guy laying in bed sobbing and it became obvious it wasn’t the first time. Heartbreaking.

  41. 41
    bonuela July 28, 2011 at 7:24 pm #

    trial and error is the most painful part of meds. i wasted 3 years taking something that stopped working rather than go through the tango of trying this and that. six months, and 3 meds later i got a high five from both of my specialists. :-D

    as for your schooling decision, it is not irrevocable. if you send him to public school and it doesn’t work, you can pull him. i think it is worth a try.

  42. 42
    Cheryl M. July 28, 2011 at 7:42 pm #

    I’m so sorry for you guys. I remember that feeling – the helplessness when your child is sick and there’s not much you can do. My older son had bronchiolitis on and off for more than a year between the ages of 1 and 2 1/2, and I spent a good portion of that 15 months sleeping on a bed made up on the floor with him for fear of a fever spike and a needed trip to the ER. He was speech delayed because of consecutive ear infections during that period, and went to a developmental preschool for 2 1/2 years. He’s starting kindergarten in the fall, and I just decided (earlier this week) to have him checked for ADD/ADHD, because he has some of the symptoms and I was hoping with all the preschool and therapists that he’d be farther along with some of his issues than he is right now.

    Just remember, you are an amazing woman, and Monkey is so lucky to have you for a mom, and you are all in my prayers and thoughts.

  43. 43
    Heather July 28, 2011 at 7:46 pm #

    Sending so, so much love your way. And hugs. I give really good hugs, you know ;)

  44. 44
    RuthWells July 28, 2011 at 8:14 pm #

    So absolutely mother-frocking unfair.

  45. 45
    Liza July 28, 2011 at 9:37 pm #

    All I can say is … much love to you and your family. Monkey knows you love him and are working with him to help make his life work. Even if he is sometimes sad for no reason.

  46. 46
    zudie July 28, 2011 at 9:48 pm #

    I was very much anti-meds too, but after seeing the youngest flourish on her ADHD meds I completely turned around. She changed from an angry, frustrated little girl into a sweet, school loving kid as soon as she was on meds.
    For our boy it was a little harder to find the right medication. He looses control too and some meds made him extra irritable. With him we didn’t change from night to day, but he is so much nicer and more relaxed since we found some pills that do work.

  47. 47
    Kristin July 28, 2011 at 10:03 pm #

    I don’t remember for sure, have you tried bio-feed back therapy? I have a friend who’s son is doing it this summer and the reduction in his outbursts and frustration levels have been amazing.

  48. 48
    addy July 28, 2011 at 10:10 pm #

    I am so sorry Mir. Love to you and your entire family.

  49. 49
    Crisanne July 28, 2011 at 10:16 pm #

    Monkey may not get all that you do/go through for him, but he knows you won’t stop until you have the best solution for him because you love him.

  50. 50
    Momma Chaos July 28, 2011 at 10:19 pm #

    Poor Monkey :( I hope the new meds help. We are totally PRO med as well.. I’d love to be anti med but they help my kiddos too much to think of not using them.

  51. 51
    Varda (SquashedMom) July 28, 2011 at 10:30 pm #

    Oh, man, I’m so sorry. It’s so hard when they outgrow the meds that have been working for them and a stronger dose of the same just isn’t an option. Sometimes it feels like a game of darts, and you just have to keep going until you hit the bulls-eye.

    Also, guessing that those questions about sadness were to tease out if there might be a mood disorder component at work there, as it is so often co-morbid with ADD and ASD issues, and often erupts at early adolescence / pubescence (with increasing irritability and angry outbursts one sign). Damn.

    I’m holding my breath on Ethan, thinking he will be heading down this path himself in a few years.

    Also? Monkey is really lucky to have wonderful parents like you who really listen to him and understand when wonky brain chemistry is driving him to behave in ways that seem “bad,” who want to know about his sadness, and will sit and hold him as long as he needs.

  52. 52
    Mare Martell July 28, 2011 at 10:41 pm #

    My son has D.I.D. and is currently in a residential psychiatric facility to deal with the traumas he suffered before he came to live with me. The choices that I’ve made to try to undo 15 years of damage have been the most difficult I’ve ever made in my life.

    I used to think, when I was younger and more naive, that one day someone would hand over the wisdom of the ages and I would know everything I thought my mother knew. Ahem. Pardon my idiocy, I was young.

    Nobody warned me that there would be the countless doctors with the polite smiles on their faces and their feet out the door when one of my son’s alters comes out. Nobody told me that the medications only deal with the symptoms such as anxiety, paranoia, lack of concentration, etc. they don’t ease the alters from taking over my son’s “bus.”

    What I do know, and you do too, is that I love my boy like no other could. He is perfect in my eyes even when he’s being perfectly horrible. My relationship with him is a true testament to what love truly is. Even at his worst, I wouldn’t dream of doing anything but love and protect him.

    Mir, you are doing what a strong woman with a lot of education, compassion, understanding, patience…you’re pretty awesome. You are his haven. You are his respite. You “get” him, even when you don’t feel like you do. Proactive, not reactive only works in movies.

  53. 53
    Crista July 28, 2011 at 11:09 pm #

    I feel for you. I know about the psychiatric meds being more art than science and how frustrating it is to *finally* find the right combo; only to do it all again 9 months later.
    Your post made me cry. Wanna trade decisions for a day? ;)
    I will be keeping all of you in my prayers.
    And the comment by Lindy? #7? She makes me wanna take her home and make everything ok. And her brother, too.

  54. 54
    Amanda Chapman July 28, 2011 at 11:09 pm #

    Such heartbreaking moments. When my Little Man has a meltdown and is screaming and crying and I can see the panic on his face I just want to lie there and scream and cry with him.
    It’s scary, that feeling of not knowing what the answer is. Of not knowing if you’re doing the best things to help.
    Thank you for this post. It reminded me that I’m not alone in having these feelings.

  55. 55
    Book of Jenn July 29, 2011 at 12:01 am #

    Oh, Mir. Oh, Monkey. Hugs for you both, from somebody who is about as pro-meds as it gets. I hope the new stuff works. And I hope one way or another, the school solution turns out to be obvious. You are in my prayers.

  56. 56
    meghann @ midgetinvasion July 29, 2011 at 2:22 am #

    Impending puberty really worries me. For Ryan, for Monkey, and for you and me both.

    If only we were able to will our children’s problems away. . .

  57. 57
    Stephanie July 29, 2011 at 8:45 am #

    This. just. DESTROYED. me… I can’t even begin to imagine how you and Otto feel.

  58. 58
    Megan July 29, 2011 at 9:13 am #

    Yesterday I was at a tech conference and the first session was about using tech and multi-media for special-needs college students. The second slide was a list of the different types of challenges our students have – and aspbergers was the second on the list. The presenter who was reading the slides off stopped there and said enthusiastically, ‘oh! These students are the BEST to work with!’

    Made my heart sing. I feel so much for your family as you navigate these stormy waters, but I do have high hopes that there is a harbor at the end, and a whole lot of people out there who will find Monkey the BEST to work with!

  59. 59
    Karen July 29, 2011 at 9:36 am #

    Hugs to Monkey. That must of been so hard to find out that he has been so sad. That helpless feeling that you just didn’t know. He is a very lucky little boy to have you as his mother. God bless your family.

  60. 60
    JennyA July 29, 2011 at 9:37 am #

    No words of wisdom, just virtual hugs to all you guys.

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    Jean July 29, 2011 at 10:44 am #

    My heart is breaking for you Mir. I’m sitting here crying for you (good think I have the day off and I’m not at work crying). All I know as I sit here typing this is that you are doing everything you can to take care of Monkey. There is not a day that goes by when I read here that I don’t think how lucky he is to have you and Otto. Somehow it will be ok, because you love him and will find a way to help.

  62. 62
    Teresa July 29, 2011 at 10:47 am #

    What is with the internet today, making me cry!?

    <3 to all of you. I can't imagine finding that out about my daughter, I think my heart would break.

  63. 63
    Leila July 29, 2011 at 11:00 am #

    Mir, I am so sorry. I hope you are getting the love and support you need to help Monkey out, because I think you are being a fierce and wonderful parent. You are aware, you are concerned, and I hope you will all be OK. I have to say, I am the “difficult/crazy” kid in my family, and while my parents never quite understood how I was doing, they still supported me. Yet, I could only explain what I am to my family at the age of 24. So I am very happy you have such excellent communication with your children. I hope you keep it up.

    Now admittedly, I just got back from the therapist, so I’m not feeling so hot right now. So I am crying because I’d love this situation to be a lot more “fair” for you. Please take care of yourself too!

    I hope it’s not presumptuous to want to tell Monkey that from what I have heard, he’s a brilliant, smart and wonderful kid. I hope he knows not to get so down on himself because of his outbursts (please don’t misinterpret: I know I have caused my family a lot of pain too because of my disorders). I know that doing so has only made things worse for me.

    Anyway, I am hoping you will all be OK. Many hugs and take care.

  64. 64
    Kady July 29, 2011 at 11:40 am #

    I’m so sorry you are all having to go through this. You are doing everything a Mom can do, and doing it all so well. I’m sorry it is so hard. Sending hugs and strength.

  65. 65
    Amelia July 29, 2011 at 11:41 am #

    A friend gave me a copy of this song when I was struggling. It comforted me. I hope it will comfort you, too: http://www.youtube.com/watch?v=98bO7ljweL0

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    Janine July 29, 2011 at 12:06 pm #

    That totally brought tears to my eyes thinking of your baby, anyone’s baby, crying alone in the dark. It would kill me to hear my own child say that. My thoughts are with you and your family. I hope all gets easier soon.

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    Aimee July 29, 2011 at 12:11 pm #

    Oh, man. NOT FAIR at all. I’m sending out a prayer that the new meds help Monkey, and that you all feel better soon.

  68. 68
    Daisy July 29, 2011 at 4:13 pm #

    Hugs to you – all of you. This motherhood gig is a lot harder for moms like us with disabled kids. I’m considering changing Amigo’s psychiatrist, but that will be huge for him. Is it right? It would be right for me, but I’m not the patient.
    Sigh.

  69. 69
    carrien (she laughs at the days) July 29, 2011 at 4:21 pm #

    Awww, that super, super sucks. I hate not knowing what to do to help my kids. It’s the most frustrating thing.

    hugs

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    g~ July 29, 2011 at 4:37 pm #

    I dread the thought that we are probably headed along the same path. At 8, we are just beginning the medication route and I would very much like for medicine to be a SCIENCE rather than a constantly swirling, moving target we randomly throw our child’s psychological well-being at. I’m sure you’ve considered cyber academy (I think it’s called)? I believe it’s an online public school curriculum offered in Georgia and probably one we’ll be considering for our little Monkey when the time comes. Good luck.

  71. 71
    Genevieve July 29, 2011 at 6:09 pm #

    Hugs to all of you, Mir.
    And you are such a good mom — the second you heard Monkey say that he’d been crying and you hadn’t known it (and there’s no reason you would’ve known), you made sure he knew that he could come and get you, no worries about being past his bedtime, you’d comfort him.

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    Reb July 29, 2011 at 9:30 pm #

    Oh hell, how awful for all of you. You poor things. i hope the new meds work wonders.

  73. 73
    M&Co. July 29, 2011 at 9:58 pm #

    I feel your pain Mir. My BoyChild struggled through a variety of medical cocktails before we found the right one. We also found a multi-sensory school for him that has helped enormously. I hope you find the right medical cocktail that works and the perfect environment for him.

  74. 74
    Cele July 30, 2011 at 12:21 am #

    My heart breaks for you, I see more and more of this in Burp, maybe my heart is breaking a little more for him too.

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    mamaspeak July 30, 2011 at 2:06 am #

    I remember being very depressed in 7th grade. All of middle school, was hard & sad and I didn’t have anything about me, (like being an Aspie,) to make that more difficult. Ok, I did/do have curly hair, but I don’t think it really counts. My point is that your hormones are going nuts, whomever you are, at that age. It’s hard to deal with LIFE because your hormones are nuts. Anything else on top of the hormone thing, well, it’s a wonder any of us make it through to the other side. I think this age is hard, no matter what, and I agree with you, it isn’t fair, at all.

    (((hugs)))

  76. 76
    Sheila July 31, 2011 at 11:26 am #

    I admire you so much for always putting the hard stuff out here. It truly helps so many people, both those who are dealing with similar situations and those who luckily aren’t, but who are probably that much more compassionate towards quirky kids or adults they meet in passing. Much love to you and Monkey.

  77. 77
    Jenn August 1, 2011 at 10:21 am #

    With school coming up I have to make a decision about meds myself. . . the ADHD kind.

    Do I give him the ones that make him nauseous all the time or do I try another stimulant that might make him suicidal (like all stimulants seem to)? Or, do I do what he desperately wants to do and try to let him hold it together by himself and see what happens?

    Being a mommy is hard.

    ((((Hugs)))) for Monkey and all little boys who are having a hard time right now.

  78. 78
    Kelly August 1, 2011 at 10:23 am #

    My heart just hurts for you when I read this … you amaze me with your strength and love and persistence. Now I need to go wipe the tears from my eyes.

  79. 79
    Jimmys Mommy August 4, 2011 at 2:01 pm #

    Ok, I just started reading your blog today and already I am crying like a baby. My son is only 5 and was diagnosed with Autism when he was 2 1/2. My journey has not been easy so far and we have only just begun. We have had to fight to get our sweet little boy into the right school program and also had to make the tough decision to start medication. It;s not easy, but somehow we manage

    I admire what you are doing and can relate. Keep fighting the good fight. Your family is very lucky to have you :)

  80. 80
    Leah August 4, 2011 at 4:32 pm #

    This made me cry. I feel your heart, I pray the medicine helps him.

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    Headless Mom August 11, 2011 at 2:32 pm #

    Catching up after BlogHer…

    So not fair.

    XO

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  1. Stalemate | Woulda Coulda Shoulda - August 3, 2011

    [...] with the polite-but-firm emails about certain dates and tasks and things we’d been promised, Monkey made it clear he was still struggling, and I began to wonder if I was having the wrong fight. Why was I trying to bend the public school [...]

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