Grief

While I would never characterize my life as simple or easy (HAAAAAA!), I have been incredibly lucky in one very specific way: I have not yet, as an adult, experienced the loss of someone to whom I was very close. So in some ways, I feel I’m something of a stranger to grief.

The closest I’d come until fairly recently was the grief of losing my first marriage, and my hopes/dreams/plans associated therein. It’s not the same, of course, but it followed a similar trajectory and kind of came out of nowhere to bite me on multiple occasions when I “should’ve” been well past mourning. The up side, there, is that time, therapy, and then a much healthier marriage have largely resolved my associated issues and pain. (Remind me to bake Otto some cookies. He is awfully swell.)

And now I’m struggling and grieving and I feel like I just don’t know how to do it, how to get through it, how not to throw down the rest of my life and stomp and cry “It’s not fair!” But nobody died, which means I have no “excuse” to use, so I keep living and writing and shopping for groceries and paying the bills and trying to pretend I am not grieving every day, every hour.

Yesterday I wrote a post for Work It, Mom! that generated a lot of discussion, and a fair number of people saying, “No, I don’t agree with you,” and I was back there in comments, reading, listening, responding, and feeling sort of like, “YES, this is a conversation worth having.” My head was COMPLETELY in my work and it felt great.

And then the phone rang, and it was the school. It was Monkey’s parapro. “Mir, don’t panic,” she started out. “But we can’t find Monkey. He got really angry with me and ran off.”

I couldn’t even process what she was telling me, exactly. How do you lose a 5th grader in a school that isn’t even all that big? The follow-on made it a bit clearer: There had been An Incident in class, he’d melted down, he ran to the guidance counselor’s office (his “safe haven” in times of stress), she wasn’t there, he took off around the corner… and by the time the parapro caught up, he was gone. Just gone.

She called because they thought he might have left the school and headed home. They had mobilized in the building, of course, and were searching there. As she filled me in and I pulled on my shoes and prepared to rush out, all I could think was that if he was angry and impulsive enough to run out of the school, there was no way he was going to stop and look both ways anywhere he had to cross the street. Which meant I might well be running out to scrape him off the pavement.

I was about to hang up and go when I heard shouting on the other end of the line. And then I heard a giant EXHALE from the parapro. “We have him,” she said. “He’s okay. It’s okay. Let me call you back in a few minutes.” I agreed. I put the phone back on its base and sat down at my desk.

I couldn’t stop shaking.

Later I got the rest of the story. He hadn’t bolted, not really—he went where he was supposed to be, next, but the parapro had forgotten he had a special activity, and then the teachers who were supposed to be there were a little late. No biggie, not really. Monkey was surprised by all the fuss. He was very apologetic.

When he got home yesterday afternoon and I tried to talk to him about it, he started screaming at me and crying that no one understands him. I bit back an, “Oh, honey, that’s not true!” Because it sort of is true. I opted to pull him onto my lap and give him a giant hug and tell him we could talk about it more later, but that right now he just needed to know that I love him so much.

Last year, when he was finally diagnosed, we were in a dark time, here. Monkey was in The Pit. (You know The Pit. It’s not that you can’t see the light waaaaay up above you, it’s just that you have no possible way to reach it, so why even think about it?) The diagnosis helped. The IEP helped. But 4th grade was—by and large—an incredibly rotten year for him.

Summer was better. He grew a ton. He was happy most of the time. And then school started again, but this time he has a parapro (finally) and more support in the classroom.

This year has been magnificent. Amazing. He’s a different kid. He loves school again. He has friends and he goes whole weeks without having Incidents. His teacher is a seasoned veteran and his parapo—God bless this incredible woman, seriously—is someone with years of experience working with kids with varying levels of autism. She gets him. She pushes him, in the best possible ways. And she loves him to pieces, and he loves her right back.

And I am mired in grief.

I am (still? again? both?) grieving normal. I am grieving the life I want for this child I love so much. The life he probably won’t have. He may have a wonderful life, yet—I’m not saying he won’t—and I even believe that someday, as an adult, he’ll mention to someone that he has Asperger’s and they will respond, “Really? I had no idea.” But he is not quite 11, and experience and research and “expert opinions” suggest that it’s going to be a very, very long road to 18. Or 20. Or 22.

He is brilliant and beautiful and funny and loving and thanks to wonderful support at school this year, he’s having the kind of year I didn’t even dare to hope for, last year, back when every day felt like a juggling act to keep him from shattering.

But the truth is that when every day was hard, it didn’t hurt this much.

The truth is that when a simple misunderstanding causes everyone (including me) to assume that he may have run off with no thought for rules or his safety, and that when that happens in the midst of what we foolishly believe is “overall progress,” it cuts even deeper. Hope is dangerous. It takes me up to where I fall further, every time something goes wrong.

We’re not even halfway through the year, and I’m grieving middle school for him. I’m paralyzed with fear over what happens if we send him to Chickadee’s school next year, and equally paralyzed over what it means if we decide we can’t. I know that when the time comes we’ll make the best decision we can and then we will fight like hell to make sure he’s okay. But the grief is still there.

It’s hard to celebrate the little victories when there are so many losses, bit by bit, the daily ones as well as the larger ones looming on the horizon.

Last week he had a meltdown during a test. A screaming, sobbing, curled-up-in-a-little-ball meltdown while his classmates, startled, stopped testing, themselves, to watch him be extracted from the room by the parapro. I think we’d gone a full month, before that, without An Incident. It was handled—beautifully, by the sound of it—and he was okay by the time he got home.

I do the things I need to do. I keep the grief at bay, most of the time. And then there are some days when I’m forced to imagine my kid hit by a car while in a blind rage and then things like the “you are totally wrong!” comments on something I’ve written seem a whole lot less important.

Some days, getting out of bed, packing lunches, doing all of the things I need to do in a day for my family and my clients… doing all of that while swathed in layer upon layer of mourning for what isn’t, maybe what never was, what I’ve already been over time and time again… some days that’s all I can do.

Some days I think, “I can’t bear it. I can’t keep pretending I can handle this.” But there’s work to be done and chores to take care of and people I love. And most especially, there is that little face that searches mine for clues about whether or not it’s all going to be okay.

So I kiss his nose and smooth his hair and smile at my favorite pair of gorgeous green eyes and tell him, again, always, how much I love him.

And in my head, I tell the grief to kindly go fuck itself already.

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107 Responses to “Grief”

  1. 1
    Cindy October 6, 2010 at 10:17 am #

    I feel you, Mir, to the point of having tears in my eyes as I read.

    Until the last sentence, which made me LAUGH. OUT. LOUD.

    Laugh until you cry or cry until you laugh. Such is the circle of life but you seem to ride that balance well. Thanks for sharing.

  2. 2
    jodifur October 6, 2010 at 10:19 am #

    Oh Mir, there is nothing to say other than, I hear you, and I understand. More than you know. I wish I could give you a hug, even if it was virtually.

  3. 3
    tuney October 6, 2010 at 10:22 am #

    Wonderful post, Mir. I would say “poor Monkey,” but your kids (and Otto) are quite blessed to have you loving them SO. MUCH. I wonder how many days my own mother felt that grief for me, that hope for relief from my awkwardness, and marvel that somehow adulthood caught up with me in spite of it. Sending hope vibes in your direction.

  4. 4
    Ri October 6, 2010 at 10:23 am #

    It’s easier to keep the grief out of view when you’re in the trenches. When you’re fighting every day, against demons, obstacles and bureaucrats, it’s easy to fuel yourself with anger, indignation and focus.

    Letting somebody else catch him, hearing about the battles after they’ve passed, knowing that you’ve got to sit back and let other people guide him through the daily course… that’s incredibly hard stuff. When you’re the one dealing with the meltdown, you’ve got adrenaline and endorphins and all those other battlefield bio reactions to keep the grief from reaching you. Now, you’ve got the (arguably) harder work of processing and guiding the ship without those boosts.

    I’m so sorry. I hope the rest of this year, next year and all his school years beyond surprise you with how smoothly they go.

  5. 5
    bob October 6, 2010 at 10:24 am #

    know, too, that you are loved and aren’t in this alone. I don’t pretend to be, but Otto, and Chickadee, and your folks, and Otto’s folks – and the dedicated professionals at Monkey’s school are all in this with you. It will be okay. Maybe not easy, but Monkey has you at his back and with that he cannot go wrong.

    Keep up the good fight.

  6. 6
    Holly October 6, 2010 at 10:24 am #

    Mir you are exactly the right mom for that kid you have.

  7. 7
    Liz@thisfullhouse October 6, 2010 at 10:25 am #

    Feeling you. Every day that my kids are fed, clothed (mostly) and go to bed (hopefully, in their own house) is a battle won! However, at this point in my life, I don’t speak so kindly to grief.

  8. 8
    Kelly October 6, 2010 at 10:25 am #

    I just want to send you virtual hugs. Your post was so moving and honest. It takes guts to brave your soul like that hon – I think you are one of the strongest women I know, even if its virtually.

  9. 9
    elz October 6, 2010 at 10:27 am #

    All I can say is I’m sending you hugs…and wine.

  10. 10
    Rachel October 6, 2010 at 10:30 am #

    Hugs to you and your family. I’d say as a general rule from my experience (as a student a loooonnnnggggg time ago and as a parent) fourth grade sucks. So there’s that, if it makes you feel any better about last year?

    I’m sorry for your grief. Monkey is lucky to have you.

  11. 11
    Chris October 6, 2010 at 10:31 am #

    I simply cannot read you at work anymore. Your words break me. Completely. Thank you for writing what you write and how you write. Hugs to you and that beautiful boy.

  12. 12
    Cheryl October 6, 2010 at 10:33 am #

    I so understand. My oldest has autism and it’s like this yo-yo roller coaster, where one moment everything is fine and the next the drama is overwhelming. It’s hard to know what is going to trigger An Incident.

    And the grief? I’ve known since my son was 19 months that “something” was wrong. He’s now in 4th grade. And while most days everything is okay, when those Incidents occur it still brings everything to the forefront. I know that much of the time he is happy and that he finds rewards in things I don’t, but I mourn my dreams and worry that he’ll be okay and able to function as an adult someday in a neurotypical world.

    Loving Monkey like you do, demonstrating it like you did yesterday – I think you’re giving him something to hold onto when those dark moments arise.

  13. 13
    Leandra October 6, 2010 at 10:40 am #

    Have you had a good, screaming, throwing things, cry? ‘Cause that usually makes me feel better. I often find that calling my mom makes me feel better too. It sort of lets me be a child again, if only for a moment, and takes the weight off my shoulders just long enough for me to get my second wind.

    {{hugs}}

  14. 14
    birchsprite October 6, 2010 at 10:43 am #

    Oh Mir! Sending you a big hug from over here. My old boss has a daughter with Aspergers… She got a place in a university in London. Last I heard she was writing radio plays and having a brilliant time of it. I remember her dad being terrified when she left home for the first time because of the Aspergers but as far as I know she is living the perfect life for her, irrespective of any difficulties.

    With a Mother like you and the family support that Monkey has, I am more than sure that he will get to have the perfect life for him. If that make sense!

    Also my comment from yesterday still stands today… dark organic chocolate is the panacea for all ills!

  15. 15
    Molly October 6, 2010 at 10:47 am #

    Oh, Mir! You’re a good mom, and Monkey is a good kid, and good things are coming and will come to you. You are brave and strong for going through each day and being able to see and embrace the love and joy through all the work and slogging and grief and crap. Keep that. I’m a worrier, too, but try hard to fight battles that haven’t come yet. If they were all here today, it’s true that you might not win them, but you’ll be able to when they arrive.

  16. 16
    Stimey October 6, 2010 at 10:49 am #

    This post really hits home. I’ve been thinking about Jack and his future a lot lately. I have that exact same thought: If I can just get him through school, I think he’ll be okay. But there’s a lot of tough stuff between here and there. I am in complete denial that he will ever have to go to middle school.

    You have all my good thoughts and hugs. I get it.

  17. 17
    Lylah October 6, 2010 at 10:49 am #

    Oh, Mir. ((((hugs)))).

  18. 18
    Michelle October 6, 2010 at 10:49 am #

    I never, not once, until you wrote this, realized that it was grief. I kept thinking, I’m just upset, or frustrated, or irritated with life. But reading this I have tears streaming because now I recognize the grief. It takes you by surprise, the grief. So many times I have become mired in it, when my son has a setback. I think “But he was doing so well!” MOST days I think I can’t bear it. Thank you for putting this in words. I think realizing that it is grief, but that it’s getting better, makes coping a little easier.

  19. 19
    teachergirl October 6, 2010 at 10:52 am #

    what holly said?

    she’s exactly right.

    while it may seem cold comfort, or no comfort at all, we are never given more than we are able to face. when facing down my own personal demons, this seems too untrue. however, there’s a caveat–we are never given more than we are able to face, with the help of those that have been sent into our path, with the help of those that love us, and with the help of a Heavenly Father who knows all and loves us more than we can understand.

    so, you are exactly the mom for monkey. you are exactly the person, at exactly the time, with exactly the right combination of compassion and courage to parent this wonderful blessing.

    but that doesn’t mean you don’t need to take time for you. you are crucial to all the things you want your kids to have. take care of you, in the midst of taking care of them. don’t let yourself fall through the cracks.

    hugs and incredible admiration heading to you from gatortown. though i may hate your team, i deeply admire you.

  20. 20
    joaaanna October 6, 2010 at 10:54 am #

    I agree with #6 Molly.

    I have been in your shoes and failed miserably. It’s hard and it sucks. I wish I had you to read when I had my own little step-Monkey. I admire you so much. hang in there.

  21. 21
    Em October 6, 2010 at 10:55 am #

    When I think of how hard you work for Monkey, my thoughts go to those kids whose parents can’t or don’t fight as hard. Kids who don’t have a general organizing this army that’s sole purpose is to guide and support him. That is when I know Monkey will be ok. He may be taking a twistier road with more obstacles but his mom got him a tank and a navigator. None of that makes The Incidences any easier to experience for either of you and for that all I can offer is a hug and prayers. I think when you are in the midst of grief and so close to it all, it is hard to see it all objectively but judging by the facts you’ve shared, I tend to think this is harder on you than it is on Monkey.

  22. 22
    Debbi October 6, 2010 at 10:57 am #

    Super big hugs! I cried as I read about the phone call, I am not sure how you got thru that! I might have had a heart attack. And your last line was so perfect!! Sweetheart, he was blessed with a perfect mom, a mom that will always be there for him, a mom that will stand by him and help when needed, a mom who understands. For that, he is the luckiest boy on earth!

    And yes, just keep reminding yourself what you said in the last line <3

  23. 23
    Jean October 6, 2010 at 10:59 am #

    The one shining thing I saw in your retelling of yesterday’s events is this: when Monkey couldn’t find the counselor in the ‘safe place’, he moved on to where he was supposed to be next. He made a choice to continue his routine after making a choice to flee. And he stayed within safe boundaries.

    I know the whole incident feels like a setback, especially if this year has been going more smoothly than last, but take comfort in the fact that he made more reasonable choices than you feared he would. That doesn’t take away the fear of what will happen the next time, but each time he makes a good/safe choice might increase the likelihood of that happening again.

    I feel for your loss and don’t mean to minimize your sentiment. I do believe that with you and your husband as parents, he will not only survive, he will thrive. Albeit with a few more gray hairs for you and probably more tears to come. It is beyond difficult to deal with reality sometimes. You do a great job, I’m sure of it.

    Best wishes to all of you.

  24. 24
    Kristi October 6, 2010 at 11:03 am #

    Thank God for you, that you are the perfect mom for him. He is lucky to have a mom that cares enough to grieve. Stay strong!

  25. 25
    Aimee October 6, 2010 at 11:04 am #

    {{{hugs}}}

    to you and to Monkey.

  26. 26
    Mia October 6, 2010 at 11:13 am #

    Grief can indeed go fuck herself (it must be a she, it’s so damn irrational!) but don’t let yourself deny her presence.

    She is accomodated in your life most easily when you take care of you: pamper yourself, give yourself permission to nap, daydream, drop the ball, and wallow sometimes. Treat YOU, not in small grudging increments, but in big messy sloppy loving ways – selfish, blatant, and necessary.

    Monkey can’t be his full potential without you… grief comes with life, all the bitter unfairness of it all – so you accept the grief, treat it by loving YOU, and then it won’t be so much in the way and you can keep up the Monkey-business…

    Love from another grieving momma…

  27. 27
    cardinal October 6, 2010 at 11:16 am #

    Our details are different, but I’ve been in the trenches 25 years. As a veteran, I applaud your recognizing it’s grief, and encourage you to allow yourself to wallow in it when need be. There are times, usually around birthdays or special events, when I just need to mourn the loss of what might have been. It doesn’t mean I am not totally delighted by what is, or how great things are turning out. Sometimes I just need to acknowledge how friggin’ hard my life is.

    Keep up the good work. You’re doing a great job, Mir.

  28. 28
    diane October 6, 2010 at 11:19 am #

    Dearest Mir, prayers and big hugs for you and Monkey – and extra praise and blessings to the parapro.

    Grief is appropriate, a process of letting go of something deeply desired. But as Psalm 30 says, mourning will turn to dancing. Monkey is an incredible child, and both of you WILL come out the other side of this stronger, more resilient, blessed in ways you can’t even imagine now. Hang in there, and know that we are praying for you, cheering you on and supporting you in any way we can.

  29. 29
    k.mayer October 6, 2010 at 11:23 am #

    Days are hard, years are short. 18, 20, 22 will be here, and you’ll have a beautiful, gorgeous, well adjusted human being to show for all the grief suffered throughout the years. I feel for you with that phone call. Glad it was just that; a phone call.

  30. 30
    Jennifer Joyner October 6, 2010 at 11:24 am #

    Oh….I have nothing helpful to say other than I’m thinking of you, I admire you, and with a mom like you, I know Monkey will be okay. **hug**

  31. 31
    dad October 6, 2010 at 11:26 am #

    You never cease to amaze me.

    What an fantastic post.
    You state your case eloquently.
    Hope is dangerous. I think it’s supposed to be. Fear is a catalyst that allows us to perform at levels we thought unreachable. Keep up the great work and remember to, as your grandmother would say, “shpei in the kasha” of the evil fear demon.

  32. 32
    RuthWells October 6, 2010 at 11:29 am #

    I’ve been grieving this week, too, so — you have company, if nothing else. I’m so sorry. For all the ways in which it gets easier, it also gets harder to accept that their normal is not going to look like other kids’ normal.

  33. 33
    Jones October 6, 2010 at 11:38 am #

    I’m always interested in what you write about Monkey growing up with Asperger’s. I worked with a male adult in a group home who has it so I’ve only seen it in adults. Interesting similiarities and behaviours. Monkey is one lucky guy to have a mom in his corner cheering him on and making sure he gets the very best out of life.

  34. 34
    Jean October 6, 2010 at 11:44 am #

    I agree with Kristi (#24). You are the perfect mom for Monkey and he is sooo very blessed.

  35. 35
    Kayt October 6, 2010 at 11:45 am #

    I love you, and your love for Monkey. You are such a great mother to both your kids.

    My son is 22 months, and I’m fairly sure something’s off with him. He isn’t affectionate, he’s obsessive about patterns, shapes, and routine, and he finally said his first word last week. We’ve been working with a speech therapist, but I couldn’t look at toddlers younger than him without getting weepy. Their cheerful babbling and chattering and hugs made me hysterical. Our pediatrician thinks I’m overreacting, but is planning on running tests at his two year checkup. I find myself already grieving for his future, and I’m ashamed of it. For all the issues I see, he’s also scary smart, funny, and has moments of interacting that make my heart sing. I don’t know if I’m doing the right thing, or if I’m trying to label personality quirks as a disorder. It hurts. And I know the grief you’re talking about, even though we’re not anywhere near a diagnosis or school or anything like that. It’s so inspiring and helpful to see how well you guide Monkey. It gives me hope if I’m right.

  36. 36
    Flea October 6, 2010 at 11:48 am #

    You dad is right – hope is dangerous and it’s supposed to be. I know you’re probably too busy for ONE MORE BOOK, but there’s a fantastic book called The Allure of Hope. It might be out of print, but there are always ways around that.

    You’re an awesome mom, Mir. I love that you keep hoping and enduring. That you melt down and get up and fight again. I’ll be praying for you and your family. You’re worth it. Oh, and you’re pretty. :)

  37. 37
    Lucinda October 6, 2010 at 11:53 am #

    Some beautiful things about grief and hope have already been said. So I won’t comment further on that. A pastor friend of mine gave me a card that said the following when I was deep in the trenches of worry about what my daughter would become. Worry is not the same as grief but I hope these words help:

    Trust. A conscious act of placing each child in God’s hand. With that act comes a beautiful awareness that through each experience–social, emotional, physical and intellectual–He is at work in their lives. He is molding them into what He would have them become. Turning even what we perceive as hurtful into His good. Turning their failures–and ours–into footsteps…footsteps toward Himself.

    Prayers and Hugs to you.

  38. 38
    laura October 6, 2010 at 11:59 am #

    Grief is exactly what you are experiencing. We all ASSUME our children are going to follow a certain path marked with familiar milestones. But somehow for some of us, the path of expectation is YANKED out from under our expectant little feet. I’m praying the unfamiliar road you are walking now with Monkey won’t be too terribly hard. Maybe I should scratch that thought and pray that your highs will make the lows more bearable.
    Take care.

  39. 39
    Little Bird October 6, 2010 at 12:03 pm #

    I also think that Monkey is incredibly lucky to have such involved parents. It’s a support system that gives kids like Monkey (and adults like me) a fighting chance.
    Life is a continuum, and we’re all in it somewhere.

  40. 40
    Megan October 6, 2010 at 12:04 pm #

    I decided once that hope was the small light that allowed you to see just how dank and dark and deep the pit really is. That was, of course, during a horrible, awful time and hope was too great a burden for me. I had to let it go – but more, I had to let THAT hope go, the one that wasn’t possible, the one I desperately wanted (would have done anything to have) but that wouldn’t no matter how much I wished, ever happen.

    And then I had to find a new hope – find it for myself, not grab the biggest, brightest, most desirable thing in front of me. I had to find one that I could achieve, that let me look forward, that had something in it for me. It took time. It took a LONG time. It is still taking time to discover it and then accept it (because, still, I don’t want to have to have given up the other). But that hope? That hope is not a burden but a gift, and it is mine.

  41. 41
    karen October 6, 2010 at 12:09 pm #

    Mir, I struggle too with a similar grief. As the doctor so bluntly told us without even a few sentences to ease the blow… “Your daughter will never be the same again”. This after a bad car accident and traumatic brain injury.

    I can tell you that it took years (four, so far)… but she has found her way, we have found OUR way.. through the pain and sorrow and grief of knowing that she isn’t quite who we came to know, her life won’t be quite as charmed as we had hoped it would be (well really, whos life is charmed anyway??)…. but she is wonderful, awesome, beautiful just the same. She is who she is…and we love her like crazy. SHE is comfortable in her own skin now… Amen for that.

    I think that’s all anyone can hope for. You’re on the right road, and that’s all you can do. One day, one hour, one minute at a time. And you love him so….. The best gift you can give him so that he can succeed in living his life.

  42. 42
    Sheila October 6, 2010 at 12:12 pm #

    Reading your post, a quote from Ralph Waldo Emerson comes to mind:

    “…the right performance of this hour’s duties will be the best preparation for the hours or ages that follow it.”

    You are now, and have been, doing the best work possible for your boy. Even from under a heavy cloak of grief, the love shines through and will sustain you both in the hours and ages to come.

    Keep in the sunlight, Mir.

  43. 43
    Becca October 6, 2010 at 12:13 pm #

    It’s ok to grieve. When I got the diagnosis myself, I grieved. For the life I knew I wouldn’t have, for the years I’d gone through thinking the reason I was different than everyone else was just that I was a horrible person. Of course you grieve that idea! You have to go through that process before you can move on with your life.

    One thing I have noticed with my aspergers is that it’s very responsive to stress. When I get stressed about something, all of the symptoms intensify. I just spent two weeks grieving a major change in direction in my life. During those two weeks, I had a hard time leaving the house, and going out into a noisy environment I couldn’t control. But it’s also getting less scary, because I know that this is something that will pass, so I’m better at riding it out without getting upset about feeling that way in the first place.

    And it does pass. I’ve uncurled again, and I went shopping in a mall even, and I’m moving on with life. This is a very long way to get to the point I wanted to make. I would guess that when Monkey melts down, he’s extremely stressed out, so he instinctively wants to eliminate all the extra sensory input he can, which results in fleeing to a quiet spot. If you can anticipate that need, and have a sort of designated spot, it might help prevent what happened with him today. It sounds like the guidance office had been serving as that, but either he needs permission to stay there if no one’s there, or he needs a new spot. Maybe practice going there when he’s not upset, even.

  44. 44
    Kristine October 6, 2010 at 12:14 pm #

    I can feel the pain and anguish in your words and my heart wishes there is something that I could do to make yoiu and Monkey feel better. Keep doing what you do because you are so good at it.

    the last line made me laugh. You are the best.

  45. 45
    Mamadragon October 6, 2010 at 12:15 pm #

    Mir, this post has stirred up so many thoughts in me that I can barely type. Grief has a way of kicking you in the pants when it comes out of nowhere. And for me, at least, it comes with that feeling of, “What is all this WORK I am doing? I didn’t sign up for this!” But of course, we did. We signed up to be parents and in so doing we signed up to work and work and work some more to help them through whatever difficulties they are experiencing, and then to be blindsided by these emotions that come out of nowhere.

    I’m so glad he’s okay. And I know he’s going to be okay in the long run.

  46. 46
    A friend October 6, 2010 at 12:18 pm #

    Your words ring so so true today, on this cold gray rainy day. I know it is cold comfort but you belong to a quiet sisterhood, silently supporting each other, all over the world.

    All my best wishes and sympathies from far away.

  47. 47
    Mom24@4evermom October 6, 2010 at 12:18 pm #

    Wow. Beautifully, eloquently said. I’m sorry for your pain. I rejoice in your joy that is Monkey too.

  48. 48
    Flea October 6, 2010 at 12:23 pm #

    Mir, I was just reading a friend’s blog (it’s blog catchup day) and read a quote which made me think of you. It’s a Wordsworth line, quoted in a movie.

    That though the radiance which was once so bright be now forever taken from my sight. Though nothing can bring back the hour of splendor in the grass, glory in the flower. We will grieve not, rather find strength in what remains behind.

    I know it doesn’t completely apply to you, but you truly seem to find strength in life’s loss and pain. You do it beautifully. We can choose bitterness at the losses in life, or find strength in what is still there, what comes out of the loss, real or imagined.

    Your Monkey is a gem.

  49. 49
    Mare Martell October 6, 2010 at 12:33 pm #

    Mir,
    I’ve taken a 15 year old boy with severe emotional problems into my home and love him as my son. Until reading your post today, I didn’t realize that I was grieving. I’m mourning, not only for myself, but for all the things that should have been for him. I hurt just knowing what he’s been through. I can’t hug him enough.

    People tell me the same thing they’re telling you. “You’re such a good mother.” “You’re doing such a fine job.” “I wish I had your patience.” “He’s come so far.” But I can’t really get why they’re telling me these things. All I do is what needs to be done when it needs to be done. I can’t do any more or less for him. He’s an amazing young man, but he has issues.

    I’ve held many tears at bay that I credited to frustration or sadness. Seeing through your eyes helped me understand. Thank you for sharing such a personal and sensitive story.

  50. 50
    paige October 6, 2010 at 12:41 pm #

    I hear you. I understand. It’s been three years since we were confronted with my teens’ mental illness.

    Three years of turbulence and horror and therapy and meds and bills. And it gradually got better and now the teens are doing beautifully. My daughter is off all her meds and no longer self harms. My son is still on meds, doing wonderfully; holding down a job and going to college part time.

    But my son will likely always need meds to alleviate his messed up brain chemistry. He will never, likely, be a neuro-typical adult. He may always need someone in his life who can help him cope with things the rest of the world does without much thought or effort.

    I grieve less these days, so much less. But sometimes grief creeps up behind me and knocks me, gasping, onto the floor.

    And that makes me guilty, because, hell…we almost lost him. It could have been so much worse.

    I should be (and I mostly am) celebrating the fact that his mere presence among the living is a victory. And it is!

    But I’m still sometimes sad for What Won’t Ever Be.

  51. 51
    jodie October 6, 2010 at 12:57 pm #

    Oh Mir – it sounds like what you really need is for everyone to tell you how much WE love you. Hope you can feel it and I hope it helps a *little* bit. Speaking for myself, you daily give me hope and inspiration on true and tough parenting.

  52. 52
    Tracy B October 6, 2010 at 1:00 pm #

    Oh Mir. Thank you so much for posting this. I know what the “death type” of grief is and it’s very similiar to what you are experiencing. I have tears in my eye and my heart aches but that last line–well. You know just what to say and how to say it. Thanks again. {{{hugs}}}

  53. 53
    Mama Bear October 6, 2010 at 1:32 pm #

    Never forget that HOPE is also what keeps you going. Whether you fall farther from each step up or not, it’s that much easier to get back up the stairs the next time.
    Great post. Makes me think about each time my daughter has an SVT attack at a swim meet, and how I wish I could take it all away for her, and I grieve that despite her great abilities in the pool, there’s that little something that holds her back.
    You are amazing.

  54. 54
    Jill W. October 6, 2010 at 1:35 pm #

    Just know that you have loads of support, love, admiration, love and prayers out here in the ether. I am amazed by your grace, even in grief, and we are all pulling for you and your family.

  55. 55
    Beachgal October 6, 2010 at 1:43 pm #

    As someone else said, all this time, I didn’t realize it was grief that has been pulling me!!! Only my situation is a bit different, my husband got hurt at work years ago and is disabled and it’s totally messed up how we pictured our lives would be. Wow. Gives me something new to think about.

    Thank you for sharing so much, Mir, and for the new perspective.

  56. 56
    Holly October 6, 2010 at 1:49 pm #

    Mir,

    I understand the burden of grief. It’s been a crappy, crappy year. My Mom died, Dad had a massive heart attack, I inherited a disabled dog who I love to pieces but who requires a lot of time and money, I’m responsible for my Grandma who is in a nursing home with Alzhiemer Disease (again, time and money), I almost lost my job and then was promoted, Gram was audited by our tax people, I’ve bought my first house and moved in, and I’ve just been diagnosed with the same thing my Mom died suddnely and unexpectedly from. And those are just the big chunks of badness, nevermind the minor incidents that weigh me down every day.

    I really do think, though, that in many ways the minor things are the hardest to handle because they shouldn’t be a big deal and they are for me. Some days, having to make one extra stop on my way home from work feels like the final straw.

    I also feel like no matter what, I’m not meeting expectations. My sisters think I’m not emotional enough, my boss (I’m sure) wonders why I’m distracted sometime…some days it feels like I can’t win.

    The thing I have to keep reminding myself of is that life isn’t a competition and that regardless of how much it feels like I’ve lost, I’m still here plugging away. And I remind myself that I’ve been treading water for a year and, really, who wouldn’t need a break or to be cut a little slack?

    You put your kids and hubby first and always try to make things better. You fix what you can, try to heal the wounds you can’t fix and learn from life’s lessons along the way. You’re harder on yourself then anyone else would ever be–would you expect more effort or a better “result” from anyone else? No, you wouldn’t.

    (((hugs)))

    Holly

  57. 57
    Katie in MA October 6, 2010 at 1:56 pm #

    I’m sorry that yesterday was a crappy, sucky day. I’m sorry that you’re having a tug-of-war between old dreams and future dreams and always having to find some sort of balance without feeling like you’re going nuts. I’m sorry you’re grieving. But I’m glad you shared and I’m glad you know deep down all that you are doing okay and what you need to do and I’m glad that Monkey’s Monkey and that he has you for his mama. I’m glad you both have each other. Hope is a feckless thug sometimes, and lots of times I want to punch her in the face because WTH?! Things will get better. In the meantime, indulge in chocolate as needed and lots and lots of hugs as you plonk along, waiting – no, not waiting, *stretching* – for “better.”

  58. 58
    Mary October 6, 2010 at 1:57 pm #

    So sorry you’re having such a hard time right now. I don’t have time to read through all the comments and I’m guessing I won’t be the first to suggest this, but I think a key word (of course, Otto is THE key word!!!!!!!) in your recovery from the grief over your divorce was THERAPY. Maybe you’re already talking to someone, but if not, why not?!?!?! If it helped before, why not now?!?!?!

  59. 59
    My Kids Mom October 6, 2010 at 2:14 pm #

    Yes, it is grief. And, no, unlike a death, it won’t gradually improve. Or rather, yes it will improve and then it will happen again.

    So as to not presume any skills on the part of Monkey, consider children with low IQ. They have parents who see peers walking and talking when their own toddler is not. They grieve. They gradually get over it, only to see that their child can’t cope with school. The grieve. They may watch their child miss milestones that were important to them, such as prom or learning to drive. Each milestone that they assumed would come but which doesn’t causes grief again. And again. And again. Consider it the death of a dream.

    How to be prepared for that? I doubt you can. You can live in the moment as often as possible and enjoy Monkey for all the traits that make you smile. You can know that grief will come just as you’ve gotten comfortable, and each time it will smack you over the head with its unexpectedness. Not at all fair, no.

    Your writing is so helpful to all the other parents out there with popped dream bubbles. We are lucky to have you– and needless to say, so is Monkey.

  60. 60
    Alison October 6, 2010 at 2:30 pm #

    My daughter was diagnosed at 4 with a chronic life threatening illness. That was 2 years ago and we still grieve what normal would have been for her. We have settled into a routine that works for her, but it is hard knowing that she will deal daily with medications and symptoms and challenges that “normal” kids never face. Her challenges have made her such a fighter, but it is so hard to let someone else help her through her days at school and hear about the results later. You also just feel your heart sink when the caller id shows the number from her school and you do not know what kind of news is coming from the other end.

    No one ever tells you how hard it is to be momma and not be able to keep things from hurting your kids. Just keep loving them and know there are lots of good thoughts coming your way and understanding from someone else who is going through it.

  61. 61
    Caty October 6, 2010 at 2:32 pm #

    Hope is the thing with feathers
    That perches in the soul,
    And sings the tune-without the words,
    And never stops at all… -Emily Dickinson

    Hope means you have to make yourself vulnerable to disappointment and grief. Crushing, paralyzing disappointment and grief. But it also means you have love and can make it through life, even if you don’t know the words to the song. You’re an awesome mom.

  62. 62
    Ann from St. Peter MN October 6, 2010 at 3:15 pm #

    Very touching post – Monkey is lucky to have you as a mom! Hugs…

  63. 63
    J from Ireland October 6, 2010 at 3:30 pm #

    Oh Mir I know what this feels like, only I couldn’t express myself as well as you did. This is something I deal with on a daily basis with my 15yr old amazing son. Best wishes to you all.

  64. 64
    Heidi Ferrer October 6, 2010 at 3:47 pm #

    Beautifully written and heartfelt. Loved this post so much.

    -Heidi Ferrer

  65. 65
    Lori N October 6, 2010 at 3:48 pm #

    I too never realized what I deal with routinely is grief. Thanks for giving me the word I needed.

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    Amy October 6, 2010 at 3:56 pm #

    I know I’ve said this here before (probably repeatedly and you’re probably sick of the same comments from me), but thank you. I’m all teary-eyed here, taking your story and applying it to my 6th-8th grade kids that I teach that also have similar diagnoses. From what you share, Monkey reminds me so much of a boy I got to teach for several years because I happened to change grade levels a couple times. I had him for 3rd, 4th, 7th, and 8th grade. He was positively lovely and funny and charming. And also unpredictable and sometimes even a little scary. But it was amazing to watch him grow and phase out some of the more difficult behaviors as he matured. He’s in high school now and while the middle school years were not easy, he survived them. He’s in a public school with excellent support and I think he’s doing fine so far. Monkey will get through middle school too. And sometimes it will suck. But most of the time it won’t.

    (Off topic–when I saw today’s title post, my first thought was “oh, no. I hope nothing bad happened to the dog!”)

  67. 67
    BethRD October 6, 2010 at 4:26 pm #

    Oh, I am so sorry you guys are having a tough week. I am two and a half years into knowing our child’s future is under a shadow (for completely different reasons) and those pockets of grief haven’t gone away for me yet. Some days just suck. The unfairness of being faced with a child who should have EVERYTHING, EVERY chance, and doesn’t, even if their chances are still good, can be overwhelming. Grr. Nothing I can do but empathize, but believe me I do. I will be rooting for Monkey’s continued happiness.

  68. 68
    Laura October 6, 2010 at 4:32 pm #

    My son has down syndrome. While my situation is obviously different, I still think you are visiting some of the same places I go (or have gone) in my grief too. This post really resonantes with me. For what it’s worth, from one virtual stranger to another, I’m sending you all my warmest wishes. I am in your cheering section and I think you are wonderful.

  69. 69
    StacyQ October 6, 2010 at 4:45 pm #

    Wow…
    Beautiful post…
    Thanks.

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    Monique October 6, 2010 at 4:52 pm #

    Oh, Mir. I’m so sorry for your grief. I think we’ve all been there at one time or another for various reasons. We’ve all mourned what “should” have been or what “should” be. When I was in my Pit (post-partum depression) I struggled over letting go of my expectations of how I thought motherhood should be, how my husband should be, how my son should be. It took me a long time to get out of my Pit. A long time to see how much better it could be if I learned to work with what IS as opposed to what I thought I WANTED.

    I learned that my expectations where only hurting me. That I can’t make it so no matter how hard I tried or fought or wished. So I let go. I let go of my hopes and ideas and my expections. I can’t control what is or what will be. Control is an illusion. You can’t control the weather, your loved ones, if you catch a cold, or anything really. And it drives you crazy to try. I’m proof of that. (seriously, they were thinking of hospitalizing me)

    So hope kinda of sucks because it springs from our expections. But, do you know what’s ten times better than hope? Faith. I have faith that even though I don’t know why things happen there is Someone who is in control of my life who does. I have faith that I’ll make it through the day. That my husband will come back from his deplyment. That when it starts speech therapy will help my son who is more than a year behind. I have faith that the life growing inside of me will be born, healthy and strong. That when my son’s tests for autism come up and he takes them the results will be… whatever they are supposed to be. And that I’ll make it through either way. I have faith that love is enough. For my son. For my family as a whole. I have faith that my best Is good enough because I can’t give anymore than that. Have faith, Mir. Faith is so much stronger than hope. Faith is a belief that it’ll be okay. Hope is a dream that doesn’t always see you through. God bless.

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    Amelia October 6, 2010 at 5:18 pm #

    Ah…you make me tear up. I know it’s a totally different situation, but I sometimes cry because my child doesn’t have “normal,” married parents. I wish things were different for her in the same way you wish things were different for Monkey.

    And when I expressed that concern, a wise friend (OK, fine! My therapist :)) told me this: “This is her little life journey. It’s different from yours. It may be harder. But it’s HERS, part of who she is and who she will become. And that’s ok.” That helps me. Maybe it will help you, too.

    Also: one day at a time. And, as another friend said (a real friend this time, not my therapist :)), “Sometimes a day is too long. Sometimes you have to take it one hour at a time, or even 5 minutes at a time.” Wise words.

    I’d give you a hug if i could. (And if, you know, I weren’t an Internet random.)

  72. 72
    Karen October 6, 2010 at 5:30 pm #

    Mir, it really, really does get better and easier. There will still be times that may smack you down — such as life changes for age peers that Monkey may not experience. But there will also be joys and triumphs, and the accomplishments will outweigh the grief and missed experiences.

    Monkey wouldn’t be the same amazing child if he were NT. Probably still amazing, but a different child. My life would have been very different had my daughter not been autistic. When I think of the amazing people I have met, the wonderful friends I have made, and the journey I’ve experienced, the positives of my life far outweigh the negatives. And I have a pretty wonderful, amazing daughter, myself. :-)

  73. 73
    Lady Euphoria Deathwatch October 6, 2010 at 6:12 pm #

    Hi Mir,

    Grief is Dealing with Loss. Any Loss!

    The more the thing means to you, the more you grieve when things change, whether for good or bad.

    And loosing future promises can be the worst ones.

    As a mother who has buried a child I know just how deeply grief can go.

    But any grief can be over whelming if it is large enough.

    Time and building a new future promise is the only answer. Along with letting go of the old promise is the only way to move on.

    I feel for you at this time, but know you will over come it.

    Hugs, Euphoria

  74. 74
    Neil October 6, 2010 at 6:47 pm #

    Didn’t I just send you a DM today about how wonderful a person you are for helping me with some stuff I was going through? And all through that, I had no real concept of what you were dealing with as a mom! No real advice, other than I’m sure with someone like you on his side, things will be a lot easier.

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    jessica October 6, 2010 at 8:11 pm #

    I’m still battling with a terrible cold, so my head is achy and I’m not remotely eloquent tonight. I thought I’d check one \blog before I checked my email for the last time tonight (that’s the main way my niece and I keep in touch, so I like to check it a few times just in case), and I found this. My only thoughts go to the beginning of a Blake poem (he’s one of my favorites), so that’s all I’ll say so I don’t say something wrong:

    Can I see another’s woe,
    and not be in sorrow too?
    Can I see another’s grief,
    and not seek for kind relief?

    Can I see a falling tear,
    and not feel my sorrow’s share?
    Can a father see his child
    weep, nor be with sorrow filled?

    Can a mother sit and hear
    an infant groan, an infant fear?
    No, no! Never can it be!
    Never, never can it be!

    You’re a good mom, and you are so lucky to have the wonderful children you do.

  76. 76
    jennamom2boys October 6, 2010 at 8:24 pm #

    I feel ya too… last week the grief and anxiety (6-yr-old was finally diagnosed w/ Asperger’s) resulted in losing my everlovin’ shit and kicking a sofa leg (ended up with a severely bruised big toe.) The next day I threw shoes at the wall, as hard as I could. This week’s been better. Good to know I’m not alone.

  77. 77
    Melanie October 6, 2010 at 8:38 pm #

    Yes to all of it! Especially the end!!!!!!!

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    @LeslieSColeman October 6, 2010 at 9:32 pm #

    My son, now 12, has ADD and mild Asperger’s. He also had mild epilepsy which he seems to have outgrown (fingers crossed). I know I grieved, especially after his epilepsy diagnosis. You know as moms we would do anything and take anything on for our children, and if I could take any of those things away from my son and give them to myself instead, I would. I know you would too, Mir. I’m so sorry you are going through this, but know you are not alone. There are a ton of anonymous readers, like me, out here rooting for you.

  79. 79
    Heidi October 6, 2010 at 9:35 pm #

    Hang tough, Mir. I just poured a bit of gin to drink for you. You’re welcome.

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    Lara October 6, 2010 at 10:30 pm #

    My sympathies. I too know that grief (though for different reasons). And just when I think I’ve dealt with it, it pops back up again. And then I feel guilty for having these expectations of “normal” in the first place, and guilt because there are so many parents out there coping with far more difficult diagnoses, and guilt because he’s the sweetest, most amazing little boy and I don’t really want to change a thing about him. Sorry you had such a rough day and I hope you never have another phone call as heart-stopping as that one!

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    Cindy October 6, 2010 at 10:48 pm #

    bravo. i love your truthtelling

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    Carolie October 6, 2010 at 10:51 pm #

    I’m so sorry you’re dealing with this grief, Mir. I wish I could hug you, and make it better.

    It may not help (but maybe it will?) for you to know that my Aspie brother weathered the storms of an undiagnosed childhood and adolescence, got multiple degrees (summa cum laude), now has a circle of very close buddies (beer and wings every Monday night) and at 43, is about to marry the love of his life, his soulmate, whom he met two years ago.

    He’s deliriously happy, even as he’s about to make the biggest change of his entire life (got laid off, is packing up and selling the house he’s owned for 16 years, moving to JAPAN and getting married — all in a five month period!) He still, even now, has (very rare) moments of freezing up, of crying and curling into a ball, but by and large, he has handled all this change with the aplomb and serenity most adults I know do not possess. To be honest, he’s also the most financially stable of us all (including Mom, Dad and extended family!) and his backrubs are the world’s BEST, no joke.

    And you know what? Adolescence and school were no picnic for an awful lot of us, neurotypical or not. I know none of the three of us had the childhood our parents dreamed of for us, for various reasons. At 44, I still occasionally cry or freeze up or curl into a ball, and I’m not Aspbergian. Our other brother, Mr. Neuro-Typical, is the least happy of the three of us, flailing and floundering as an adult after an adolescence spent as BMOC and captain of the football team, while Aspie Brother is filled with joy and light, dignity and purpose.

    I’m so sorry for your grief — and I hope you’re able to eventually lose the grief, as you watch Monkey become the amazing man he will become one day.

    (Forgive my assvice, please — I don’t know you except through your blog, and I don’t know Monkey. I just offer what I can in the hope that it helps in some tiny way to know others have walked similar paths. And if I’ve overstepped, feel free to delete, ignore or bitchslap me!)

  83. 83
    Lady M October 7, 2010 at 12:58 am #

    Thinking of you and sending love.

  84. 84
    Veronica October 7, 2010 at 1:06 am #

    I’ve had both sets of grief and it catches you unawares. You think you’re doing okay and suddenly your breath catches and your heart hurts, badly, and there is nothing left but to ride it out.

    My grandmother died, the women who did just as much raising of me as my mother. The one I lived with when things were bad as a teenager. She got cancer and died.

    And then my daughter was diagnosed with Aspergers and my son, is undergoing assessment for ASD or possible issues associated with it.

    The grief is hard, because you want things to be different for them, you want it to be easier. But it isn’t.

    Anyway, what I’m saying is I know how it feels and it hurts. Like physical pain.

  85. 85
    just beaux October 7, 2010 at 1:39 am #

    I wish you were my mom.

    After reading this I cried. Your love for your children is very awesome.
    I am reminded of my youngest who seems to have some issues of her own. We have never had to test her for anything, but it remains apparent to us that she has a little OCD. As a younger child she struggled a lot with sensory issues, but that seems to have gone away. Her pediatric Dr. is brilliant and encourages us to keep doing what ever it is we’re doing and give her all the nurturing and love that we can. I admire your strength and courage. Keep kissing his nose and smoothing his hair. And love.

  86. 86
    Lisa C. October 7, 2010 at 2:30 am #

    Hey Mir, I just wanted to let you know I was so much like Monkey when I was a kid. I seriously could not function in social settings and school was an absolute nightmare. My parents ended up taking me out of school for a couple of years during middle school (7th and 8th grade) and when I started school again at 14 it was like sending a whole different person to school. I was bored at home and wanted to be there. I took more responsibility. Overall the two years off was really good for me, and while I was “homeschooled” I honestly didn’t do much, and it all worked out. I graduated from high school. I graduated from college. I have a kid and a home and a job and a life.

    Don’t worry about Monkey. He’ll find his way. It gets better.

  87. 87
    KG October 7, 2010 at 8:25 am #

    Classic Mir. I’m sitting here sobbing, groping around for the kleenex box and then I get to the last line. Thanks for the comedic relief. I believe God doesn’t give us more than we can handle- and whether you know it or not, gf you’re rockin it- crappy moments and all. I think it’s harder on us the parents, they don’t know any different. Hang in there, that monkey just adores you.

  88. 88
    Kate October 7, 2010 at 8:34 am #

    Mir – You write beautifully about difficulties you handle beautifully. You’re an inspiration to us all. If we can all take one snippet from your wise ways, the world will be a better place. Thanks for sharing so much of yourself.

  89. 89
    JennyM October 7, 2010 at 9:29 am #

    Hugs.

    I know the feeling. Not because of kids, but that feeling of being blindsided by the loss of something when you’ve gotten out of the habit of dealing with it all the time — I am very familiar with that feeling.

  90. 90
    Kate in Michigan October 7, 2010 at 10:53 am #

    I had to stop reading halfway through the comments. I have rarely read such raw honesty… such bare, unclothed deep-heart revelations.

    I am learning so much from your comments, ladies. I can’t believe so many people were willing to expose these painful, raw feelings. I tip my hat to you all.

  91. 91
    pam October 7, 2010 at 11:45 am #

    Because this is your spot to blow off steam if need be I’m not going to write what I feel about grief.

  92. 92
    Diane October 7, 2010 at 2:47 pm #

    Oh, Mir,
    Thank you for writing about this. I’m so sorry you had that time of panic, and I’m so glad your boy is okay — and even happier to know that he is in the hands of a good parapro who understands him and can help him get what he needs at school.

    The grief. Oh, the grief thing. It is definitely something I feel all of the time, and I’m aware how exacerbated it is now that my daughter is a teen and there is the oh-so-natural pulling away from parents. It’s normal. It’s healthy — but it sets up a grieving all of its own, for the little toddler who loved to play dress up, the girl who found me to be her favorite person in the world. As a teen, she’s moved on to the stage of pushing away. Add that to the grief of parenting a child (teen!) with Aspergers, and some days it just makes me want to bawl. It’s grieving the past and the future all at the same time.

    It is a very hard thing to express, and especially difficult to convey to friends and family who don’t live with these issues. But you’ve expressed it beautifully.

    Thanks for giving voice to this for so many of us.

  93. 93
    Karen October 8, 2010 at 10:09 am #

    Ah Mir, some day I will get up the courage to write my equivalent post. Have you ever read/heard of the piece called “Welcome to Holland?” Here: http://www.our-kids.org/Archives/Holland.html

    It’s such a way of looking at the idea of having kids, or even a life experience, that are different than your expectations.

    My situation is different. My kids are bright, smart, but they’re DIFFERENT. And I ache inside for all the ways those differences will stand out as they grow and mature (and both happen in asynchronous ways – my 6 year old girl is almost as tall as her 9 year old brother and my 9 year old broke my heart when he grasped *instantly* the choice the people who jumped from the towers on 9/11 were making and my 6 year old still cries *all the frigging time* over the most minor stuff and…)

    And there’s terror in knowing your children, knowing their capabilities, limitations, downfalls, their kryptonites. But there’s some beauty in it, too. You KNOW. You can teach him to see those chinks in his armor. Those places and times where things could break down and he could be in danger.

    As much as it causes me physical pain from worry, I know my children are lucky to have me, as yours is to have you.

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    Half Assed Kitchen October 8, 2010 at 11:00 am #

    He’s lucky to have you as his big love.

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    Lisse October 8, 2010 at 4:56 pm #

    Dear Mir,

    You may not be feeling it right now, but you have been quite the inspiration for me.

    I have a monkey in 2nd grade, and though he’s made great strides in recent years, there are so many ways that he is not like the others. Mostly it doesn’t bother him, but those days when he realizes it just rip me in two.

    The police have been invoved in searching for him twice. He doesn’t bolt any more, but I haven’t shaken the fear and the constant scanning of the room.

    When the first evaluation came through suggesting ASD, I cried, even though by then I knew it was coming.

    Right now, I’m in a period of celebrating a newfound maturity on his part, but I too am nervous about middle school.

    I try to focus on what he CAN do, and it’s quite a bit. Mostly, it’s an incredible privilege to be his mom. I try to remember that.

    Wishing you some peace.

  96. 96
    Martha October 8, 2010 at 9:57 pm #

    Wow! You blow me away! I can’t add much more than that that has already been said and quite well by the way – you have awesome readers. I was just thinking about you and hoping that things were going better for you and both children this year. Hugs to you and Monkey and know that you both are loved and admired greatly!

  97. 97
    Jenn October 8, 2010 at 10:07 pm #

    Yes grief, will you please go fuck yourself? Maybe not so kindly? Thanks.

    Sending you love and hugs and good thoughts and a whole barnyard that poops glitter.

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    shadymama October 8, 2010 at 10:21 pm #

    dear mir.
    you are very brave and wise. also beautiful. you look in the mirror with clarity and self-awareness, stop often to breathe, and know how to say “sorry” when you mess up. yer words are strong and true; yer love for yer family – absolute. i wish you comfort through the grief, warmth through the tears, and very very good chocolate on those long, tough days. please know that yer spirit and the struggles and triumphs you post here make many, many people’s worlds all the brighter.
    much love and gratitude.
    katishadymama

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    Lori October 9, 2010 at 1:03 am #

    My son was diagnosed with aspergers a little over a year ago. The things you write and describe, it’s like you’re inside my head and heart, just further ahead on the road that will rise up to meet me. I cannot begin to tell you how therapeutic it is for me to read your blog and how “normal” it makes me feel and how much it gives me hope. Keep fighting and know many appreciate you alongside your grief.

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    MomCat October 9, 2010 at 8:07 am #

    I agree with the posters who said you are the perfect mother for him, Mir. Whatever you have to do to get through the hard times, including grieving, is okay. I am here for you, in a non-creepy, yet supportive, way.

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    sara October 9, 2010 at 12:47 pm #

    Hi Mir, I’m a high school special ed teacher and we are having a lot of success with this program
    http://www.circleofriends.org/index.html
    You might ask your SLP to consider trying to start at the junior high level. It can really create an amazing network of support and additional eyes and ears on campus.

  102. 102
    Jen October 9, 2010 at 7:41 pm #

    Hey, I have bipolar disorder. Most of the time I’m okay with it. Then suddenly I have a bad reaction to a medication, or a new symptom comes out of nowhere, and I have to Deal With It, go see my psychiatrist, have my cocktail of pills tweaked again, get used to a whole new array of side effects, whatever, and in the middle of it all I’m. Just. Livid. Excuse me? Who the fuck decided I needed to have this disease? Because I’m sick of it. Y’all can take it back now, thankyewverymuch. And then I get very sad. Because I do have this disease. And I’m stuck with it. And every now and then it hits me that I’m. Really. Sick.

    Which sucks, just incidentally.

    So I get it. I totally understand. I can’t imagine for two seconds what it would be like having a KID with a serious illness. I don’t have any kids, which is probably a good thing, but that must be thousands of times worse. But it sounds like you are doing a fantastic job. Of course it takes a toll on you. How can it not? And of course you’re grieving. Everybody has a mental picture of how they expect their life to turn out. We lose that mental picture a little at a time as reality slowly rolls in like the tide. But to have a sick child–well, hell, that’s like a tsunami slamming into the shore and ripping away the whole mental picture in one swell foop.

    But you’re doing it. My hat is off to you, ma’am. You are a true hero in my book.

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    Val October 10, 2010 at 5:37 pm #

    Hello, I am new to your blog and I have been reading over some of your posts, and loving them. This one stood out for me because I have a 19 year old daughter with ‘difficulties’ and know the challenges you are facing. My daughter doesnt have a diagnosis and we feel there are both advantages and disadvantages with this. I have had some really tough days, like the day when she came home crying and asked if she was brain damaged because he friends mum and dad said she was. Or the day I found out the high school she was at had arranged a college place for her on a special programme without my knowledge because she wasnt ‘thriving’. I could go on, but you get it dont you and thats the point I was making. Dont be too hard on youself either, I know you are the mother and the buck stops with you, but you are only human and we are all fallible. I wish you and your family more sunny days than dark ones.
    Val

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    tripleblessings October 12, 2010 at 4:50 pm #

    {{ hugs }} and thanks for this beautiful post.
    I wonder if you would be interested in the book called Gravity Pulls You In – Perspectives on parenting children on the autism spectrum, edited by Kyra Anderson and Vicki Forman. You can find it on Amazon. One of the contributors, Ann Douglas, is the author of a number of Canadian parenting books and blogs, and her son was diagnosed with Asperger’s about a year ago.
    It’s wonderful to hear that life is so much better for Monkey this year. I hope you find some good companions on your journey through this grief, learning curve and continued challenges of life. It sounds like you are doing everything right.

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    Julie October 15, 2010 at 11:07 am #

    Came back to reread this today. Thanks for sharing. Wonderfully written and very helpful.

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    mo October 25, 2010 at 10:50 pm #

    having a rough night with 14-year-old boy, triggered by the move of his best friend, I googled asperger’s and grief and found you, another Georgia mom, who’d been triggered earlier in the month. your words make me feel less alone and remind that triggers aren’t forever. just hard when it’s at night. i hope to read more of your blog and read anything else you have to say about our shared topic.

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  1. Coping « Driven Coconuts - October 6, 2010

    [...] that to the family whose son has frequent seizures even after radical brain surgery.  When I read Mir’s post about grief it opened something in me. As I read, something cracked. Tears started flowing and I suddenly [...]

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