There are days when I feel like I only exist to disappoint my kids.
And not the yeah-no-we’re-not-going-to-stay-up-late-and-eat-candy sorts of disappointments, which—truth be told—I rather delight in. When my kids want something unreasonable, I’m apt to say no with relish. I’ll be the first one to point out that I am RUINING THEIR LIVES because I am SO MEAN and I NEVER EVER LET THEM HAVE WHAT THEY WANT! I’m not talking about that sort of stuff.
I’m talking about days when I feel like I am forever saying no, justifying the things that hurt or upset them, and just generally feel like their own personal harbinger of doom instead of the kind of mom who loves, protects, and bakes cookies. I mean, I try really hard to do that stuff, too. But on a day when I’m busy breaking their hearts, who the hell cares? Cookies only fix so much, you know.
And I hear I could get into trouble for making them margaritas. So.
About a month ago, Monkey and his BFF had a little tiff at school. Monkey went from zero to Hulk in about half a second, because as far as I know, he and Lemur have NEVER had ANY sort of problem at all before, and Lemur basically just reached out and smacked Monkey during a discussion. The bad news is that Monkey completely lost his crap (surprise! except not really!), but the good news is that he didn’t hit him back (progress!).
The medium (?) news is that his teachers elected to change the seating so that Monkey and Lemur were no longer seated together. The boys were told this was a temporary move, and of course an hour later they were perfectly fine and wanted to sit together, again, but were told that the new seating arrangement would last “a little while” and they needed to be patient.
I could now spew out at least a hundred thousand words about what has happened in the intervening month, and it would cover everything from what was on sale at the supermarket to the weather, but if you asked Monkey to detail the last month for you here is what he would say: Lemur was supposed to be moved back to sit with me and they promised and promised and promised and it never happened and the teacher lied and everybody hates me and I’ll just go eat worms and die.
This, ladies and gentlemen, is called perseveration. Nothing else matters, because Lemur is not sitting with Monkey and THAT IS BAD AND WRONG AND NEEDS TO BE CHANGED.
There have been multiple incidents of Monkey getting it into his head that TODAY IS THE DAY! And then when he gets to school and demands the teacher move seats and she (wisely, and calmly) informs him that 1) he doesn’t get to make demands and 2) it’s not happening, he loses his crap all over again. The thing with his particular rigidity is that he cannot bend his thought process to entertain different possibilities, so instead he bends what he thought he heard or was told, until it conforms to what he wants. Ergo, each time he insists that TODAY IS THE DAY he honestly believes it was promised to him, and it’s a crushing blow when his desires aren’t met.
We had a particularly awful Incident on Monday, because he was convinced that being back from spring break finally meant TODAY IS THE DAY FOR REAL, plus his parapro was out, plus the guidance counselor was out. I won’t go into details, but suffice it to say that it wasn’t pretty. Well. I had a long talk with Monkey, that night, about how every time he pitches a fit it likely means he has to wait even longer because the teacher can’t very well give him what he wants on the heels of his behaving badly, because then he’s being rewarded for being a jerk. “Just be patient, honey,” I begged him. “I bet that if you stop asking and you just really behave, you’ll get switched back soon.”
I thought I was being logical. Of course, Monkey marched right into school on Tuesday morning and demanded that the seating be switched, so clearly I had a huge impact on him. Ahem. And HEY, Tuesday was when it was decided that the boys should be kept apart for the rest of the school year, and never switched back.
This makes me want to rip my hair out, one handful at a time. Everything about this makes me want to cry. (Actually, if you want to get technical, I did spend most of yesterday crying about it. Because I’m mature like that.) Turns out that Lemur’s mom would rather the boys be kept apart, because she feels the situation has become stressful for him. And let me be perfectly clear when I say that I totally respect her position; she’s only looking out for her kid and I get that. But. BUT. I got this info secondhand, which hurt my delicate little feelings, and I’ll suck that up eventually (even around my huge, weighty baggage of feeling like I spend half my life managing how my son interacts with the “normals” so that other parents don’t hate us and here the one person I thought was my local special needs ally maybe is not, but okay), but the fact remains that Monkey was promised a reunion which he was then told is not going to happen, and this is really, really hard for him.
It’s also how it’s going to be, and life is like that, so okay. We need to help him deal with it.
But the bottom line is that on Monday night I looked my son in the eye and assured him that the teacher would never lie to him, that he’d been promised they would be moved back; and then the very next night I had to tell him that I was wrong, she was wrong, we’re all very sorry, but actually no, this isn’t going to happen and now we have to deal. And he cried and said he was told that Lemur didn’t want to be moved but of course Lemur said that wasn’t true at all and now they should just move them because they both agree! And I was left trying to figure out what to say that would help.
Nothing helps. “Life isn’t fair sometimes, bud. This is one of those times. I’m sorry.”
He’s angry and disappointed. And I’m his own personal Angel of No Mercy.
On the other hand, we told Chickadee that we’re going to have to shelve nerd camp this year unless we can get her diagnosed/treated within the next few weeks (which, HAHAHAHAHA). I actually think Monkey’s disappointment is easier to deal with, because Chickadee is doing the mature thing and just wandering around looking sad rather than complaining, and that’s just about killing me dead.
“Mom,” she said to me the other night, “they’re never going to figure it out. I’m just going to be ugly and itchy for the rest of my life.” Skewer to the heart. I then spent four hours whispering sweet nothings to Dr. Google, and I actually think I may have figured out what she has. All I have to do now is get one of these doctors to test for it, and if I’m right I suppose I could do a little victory dance, you know, inbetween the paroxysms of guilt that I allowed doctors to waste 3+ years NOT diagnosing her and I figured it out online in half a day.
As a bonus, if I’m correct it’s genetic from my side of the family. So at least she can be disappointed with me about that, too.
(And how is YOUR week going?)
Listen, all of this sucks. I don’t know any other way to frame it. It just does. But last night after dinner, Otto and I went out and sat on the porch swing, and the dog sniffed around and jumped up and jumped down and chased bugs. Then Chickadee came out and plunked herself down in my lap and random conversation led to hysterical laughter over things that probably weren’t all that funny, but seemed like they were at the time. Then Monkey came out, and Chickadee picked him up and jogged him around on her back while he giggled, then she left him with us and went back inside, and he made us laugh, too.
I wish there was less disappointment in their lives right now. But I’m grateful that even so, we can still laugh.
Just wanted you to know that you have made a very real impact on my life the last few days. I have been coping with some very-real-and-hard-for-me stuff that I know is not the end of the world, but still, it has been hard. And, though I don’t know you beyond your blog and FB, you have touched my life. Thank you. And, while you make jokes (sometimes that is the only way to cope), I also want you to know that I think you are dealing with a lot of disappointment and stress in a very mature (and very self-reflexive way). And, I wish there were more people like you in the world. So, I am so sorry that it is so hard. And, I wish that it were not happening and that you did not have anything like this to share with your readers. And, at the same time, I am feeling really thankful for your reflections and sharing.
Sigh. That sucks.
1) Yes, being the Fairy of No sucks. A lot. Why the hell is so much of parenting wearing the Wings of Disappointment and waving the Big Sparkly Wand of Death to Dreams?
2) OH! Vindication of Dr Google!
3) I think I haven’t had enough sleep because now I want to suggest that you hop into a phone box and quick-change your fairy tutu for the thigh-high boots and long fluttering cape of The Searchinatrix – because Googling is so totally a super power and should come with an outfit.
4) Is it Halloween yet? Because I have some ideas for a few rockin’ costumes.
5) Hooray for laughing, because while the rest of the stuff is surface, laughing is right at the foundation.
Inhale deeply those little moments…
I love reading your blog, and I love how at the end of really tricky stuff you find a little glimmer of hope. I could learn a lot from you. Should?
Well that just sucks all around.
sorry, but sometimes I think well, that just sucks is the right answer.
Too much suck. I’m so sorry.
I’ve got my fingers crossed for you that you’re right about Chickie’s rash. Good luck!
‘Then, when it seems we will never smile again, life comes back.’ – anonymous
Hurray for Dr. Google! Hope today is easier. Live, laugh, love. Hugs…
I know I’ve been posting this a lot lately, but ~hugs~.
It’s hard feeling like you’re carrying the weight of the world on your shoulders, but I hope it helps to know that we’re all carrying a bit of it, as well.
Yes, sucky indeed… But life lessons and thankfully they are learning through love. I bet those moments of laughter and togetherness carry a lot more weight than the disappointments.
Oh how I hope you have figured out what chickadee has! You will deifinitely be SuperMir then! And poor Monkey – it IS unfair and I’m so sorry he (and you) are dealing with this.
You bring tears to my eyes, but I’m so glad you can laugh with your family at the end of the day. I love those moments like you describe! Really truly helps with the helpless moments.
Because of my mad skillz with Google, a loving family member of mine suggested I could go into a research-based profession. Um…. yeah.
I hope Dr Google turns out to be better than the Drs KnowItAll.
Ooooh, I wonder if a geneticist would be more amenable to doing the testing?
OH, that just sucks. It’s hard to tell our kids that sometimes life isn’t fair. It’s especiallly hard if that kid just really doesn’t understand the concept of why not. When times get hard, you can always try our levity bringer- Dijibouti. Apparently the mere mention of the country is cause for hysterical giggles.
Oh, Mir, I’m so sorry about all of this. I’ve been reading and not commenting for the last several days because I just don’t know what to say, except I’m sorry. You are strong and a GREAT mom, and you’ll come out the other side pooping rainbows. Or doing something *else* that’s also really, really awesome.
I dearly hope that you’re both right AND that you get to rub it ALL UP IN DR. BADHAIR’s FACE. I am going to go over here and work on my maturity levels now.
Sorry to hear about all the troubles.
Is there any way that a middle ground can be found for Monkey and Lemur? I think feeling that he can trust his teacher’s word is very important! How about something on the order of they can sit together for 10 minutes at the end of every day when their behavior warrants it. And I want Chickadee to go to nerd camp! Please let her go!!
Right now your struggles with Chickie resonate the most with me because we’re struggling with our own mystery illness. I’m hanging all my hopes on an elimination diet that will instantly cure the yuchy tummy, eliminate all ADD tendencies, soften the sensory stuff and deliver pink ponies for everyone. But no pressure. So hooray for Dr Google and super searcher Mir! But no guilt on not finding a possible answer before. It’s a known fact that if you query the same thing on google for 5 days in a row you’ll get 5 different sets of results. The ones and zeros were all lined up in your favor this time.
And your moment on the porch sounds nice.
* inbetween the paroxysms of guilt that I allowed doctors to waste 3+ years NOT diagnosing her and I figured it out online in half a day.* Don’t you dare go there!!! Anger, yes. Guilt? Hell no! Shame on the doctors (ALL of them) not you!
Wow…. if YOU and Dr G are right, and the so-called professionals and specialists couldn’t figure it out WITHOUT YOUR HELP, it seems like they should be punished for Gratuitous Acts of Willful Stupidity. Or publicly humiliated. Or they should give you a big shiny trophy, or something!! Although simply fixing Chickadee would be huge.
And, when you talk about Monkey, it sounds so much like my ex-husband:
“he cannot bend his thought process to entertain different possibilities, so instead he bends what he thought he heard or was told, until it conforms to what he wants.”
I am more and more sure that my ex-husband is an Aspie. Although that does not excuse his stalking me.
Mir. Oh, Mir. Chickadee’s medical issues suck hairy donkey balls, and I will be thrilled if you have figured it out, but, and by that I mean, BUT, you are not allowed to beat yourself up about not figuring it out sooner. You got lucky (I mean, fingers crossed that you got lucky,) but you have also been moving heaven and earth to figure this thing out. There’s no kicking yourself allowed. Seriously.
And poor Monkey, and poor you, because Lemur’s mom really should have given you a headsup. I think it’s fair to be a little hurt that she didn’t. This too shall pass, but poor Monkey.
I live in a world where Dr. Google only makes me go into a paralysis of extreme horror and “O, God we are ALL going to DIE!”. If it has actually made some sort of SENSE out of your little Chick, then I am INSANELY overjoyed for you.
I have lurked on your life over in this little corner of the web for a very long time, and you always handle things with so much grace and absolute adult-ness and are even quicker to point out when you may have not. I have nothing else to say than you are a great mum even when you are the fairy of broken dreams and I am in nothing but complete awe.
GANBATTE!
~MF~
This is exactly what I meant in my post today. Despite our yuck I was/am still in a happy place for me. It’s been a long time since I could say that and it feels good.
xo xo
Mir, I love everything you write. And all I’m sayin’ is that you had BETTER keep us up to date on these issues. Because we are very invested at this point and we all want to know what the heck is ailing your child!!! All the best to her and Monkey as they are dealing with their disappointments.
With all the hugs and love in the world, I would like to respectfully ask that you please hand me the stick you are hitting yourself with, so I can add it to the pile I am making. I am planning a bonfire of guilt sticks, since we are all spending way too much time hitting all the wrong folks. The people who should feel guilty are the professionals, not the frantic mother using Dr. G. to fix a medical problem. You are a fantastic mother. The doctor who referenced House, well if I had my way we would light her medical license to start the fire, but I may be having a bad week. I just want you to know that none of this is something you should feel guilty about. You are a warrior mom, and while I am sure you are exhausted, you have nothing to feel bad about. :)
dr. google is my very favorite dr. hope the road smooths out for you all very soon, you’re overdue!
Hope you can find an MD to get your daughter’s test run. If it turns out you’re right, is there a treatment that will work soon enough for her to go to camp?
So, I’m dying to know what the diagnosis you came up with. My daughter gets a similiar rash and has all her life. She’s been tested for every thing from sun allergies to lupas. No one could figure it out until we finally just gave up and now we just treat the symptoms.. I pray that you see the light at the end of your tunnel soon!
I’d like to know the diagnosis possibility too, maybe it’s what’s wrong with my husband? …
I am so sorry things are feeling so painfully disappointing. I want to cry for Monkey, I can’t even imagine how he felt hearing that he’ll never be moved back to sit with Lemur again. Oh the pain when the world just up and jacks with our kids. It sucks.
I also can’t tell you how impressed I am with you in finding a potential solution on google to Chickadee’s problems. I swear this is the first time I have heard of someone moving in a positive direction after internet medical reserach. I usually only find information that leads meto the belief that I am infected with something that is surely to either kill me or make most of my limbs fall off.
I hope Monkey finds peace with this stumble in life and Chickadee gets tested and soon has the soft, non itchy skin she deserves. Keep laughing….because that really is huge. All of it sucks, but the laughing is pretty damn fantastic.
Oh, oh, oh…
I am sorry that LemurMom couldn’t see her way through to talking things out with you. I am sorry that Monkey’s teacher, while obviously kind and smart, hasn’t learned that with aspies you often have to begin with the negative imperative, and scale back, to lessen just this kind of behavior.
I am sorry that the human body is such a wonderland of things to go wrong, and that dermatologists especially seem to have difficulty with the pitfalls of diagnosing children (says the girl who was told that her mild but persistent case of coin eczema was due to fleabites because I had pets. Never mind the doctor who wouldn’t come close enough to discover that no, I did NOT have recurrent chicken pox, but poison ivy. Dermatologists are not my favorite, can you tell?)
(NB: The reality that most doctors don’t have that precious four hours for research is NOT YOUR FAULT, so put down the guilt stick and back away from it slowly.)
But… Thank you for being such an admirable example for finding the silver lining, for ferreting out those golden moments and presenting them as the gems they are. Whatever your children may think, you are definitely in the top ten parenting role models in my life.
I am so so glad for the last two paragraphs in this story! Because otherwise there is just suck with suck dribbled on top.
When life sucks big green apples (not the type I like, but the ones that promise delicious tartness and end up mealy sweet) hysterical laughter makes the world seem right.
I am currently the “wicked stepmother” for actually suggesting that all the sugar the 14 yr old consume may not be the best idea for him and his ADHD. I suggested to start slow, you know NO MORE SUGAR after 8pm perhaps? I got the seriously evil eye and then had to submit my defense of “Hey it isn’t PUNISHMENT it is to help you and your brain and HEY! Maybe we can get you off one or more meds if you break your sugar addiction and you stop going from MONKEY ON CRACK to SULLEN WOE IS ME YOU ALL SUCK Brain.
I still think it fell on deaf ears.
Point is, yeah kids have no one else to blame their disappointment on but the parents. I am helping his dad save for therapy.
I vote in favor of geek camp if at ALL possible. It made a world of difference to me when I went over 50 years ago. But you are closer to the situation then me, so your vote counts for more then mine.
Well.. as kids, we never could choose who we wanted to sit with in school and I was always seated with the worst, impoverished, dirty student in hopes that I’d help him with schoolwork. He was a nice kid otherwise, and I didn’t resent it too much. But it felt like far too much responsibility, especially as I was very insecure and a bit traumatized. I needed someone to help me too! I’m sorry for Monkey, I truly am – these things seem to matter SO MUCH when you’re a kid. But.. he’ll survive.
I’m sorrier for Chickie. I really, truly hope that you’ve managed to find out what’s wrong and that there’s medication for it, and that she’ll be able to go to Nerd Camp. It really sounds like something she should be going to.
No guilt is warranted. You’ve done the best you could — and more — with the information at hand. The doctors in the big, fancy clinic are the ones who should have come up with the answer — not you. They deserve a double helping of guilt.
Poor Monkey, and poor Lemur. How awful to be told that they would be able to sit together eventually, then have that revoked. That is difficult for any child to deal with. For Monkey, it could destroy all faith in his teacher. I wish something could be done to make that better.
And I really, really hope Chickadee gets to go to nerd camp. It will be the highlight of her young life.
If I remember correctly the sole purpose of my mother’s existence was to drive me nuts. A few years ago an old childhood friend informed me that ALL my friends thought my mom was awesome! I have the sneaking suspicion this will be the case for you and your kids.
(Also, I recognized some years ago the sheer awesomeness of my mom, your kids will too)
Sympathies.
I remember when one of my best friends with whom we carpooled daily told me that her son didn’t want my (Aspie) daughter in their car during a field trip.
Fast forward to high school, and one of the girls in the neighborhood was embarrassed to carpool with our daughter, so her mom drives her separately. Oh, well.
I get it. She’s awkward and immature for her age. But oh, the pain. At least my daughter was and is unaware of the incidents.
All of that leading up to Lemur’s mom….I feel for her, too. Sometimes we are all just coping and dealing with things as best we can. She may have just not been able to deal, and let the teacher handle it. Also, you only have the teacher’s word for it that Lemur’s mom wanted them separated.
I know it feels personal, and it feels hurtful, and you are having to pick up Monkey’s broken pieces. I’d be willing to bet that it really wasn’t personal with Lemur. Lemur’s mom has to advocate for him the same way that you have to with Monkey.
Dr. Google can be a blessing and a curse. I did a search of this type when Amigo was young and falling apart. I found Asperger’s, which is another item on your “OMG, that’s my kid” list. Wishing you luck and sending you lots of hugs. I wish you were closer; we have a good network and support group for parents of kids on the spectrum.
Oh Mir. I’m sorry your kids are having such a rough time of it, and you too. Rachel (commenter #1) said her piece beautifully, and so I just wanted to add a, “Me too!”.
Hi Mir! I totally agree with Paula- would it be possible for Monkey and Lemur to get to earn a chance to sit together? It drives me NUTS when kids with ASD are given vague answers about when things are going to happen, and then everyone is surprised when the kid freaks out trying to figure out when it will really happen. ASD 101- these kids need concrete, clear and consistent information! Gah! If you don’t mind me offering my 2 cents worth…have you ever tried using Comic Strip Conversations (Carol Gray) to help discuss difficult situations? I love them and use them frequently with great success.
As for Dr. Google helping you possibly solve Chickadee’s medical mystery, good for you! Dr. Google gave me a heart attack (baby boy is having some mystery symptoms himself). I forgive Dr. Google if he was nice to you!
Hysterical laughter with your family is way better than margaritas will ever be.
The beginning is a storm and you end with the promise of a rainbow! Awesome!
Sigh. And yeah, that all sucks. But I really do hope you’ve figured out what’s up with your daughter though because even though it MAY come from your side of the family I’m sure you gave her many GOOD things from that gene pool too. Hugs! And good luck!
I just wanted to say that you made me cry. Not necessarily in a bad way. Your kids are so lucky. I hope they are able to realize that someday. And I really wish that my mom would have told me about all the tough parts of parenting. There is the right from wrong but than having to help them understand that not all people in this world like you or want to be your friend is tough. My poor little one has some real anger issues and self esteem problems and the kids at school just tear her up which in turn tears me up. You just want to insulate the world.
I enjoy reading your blog. You make me think of things in a differnt light. That’s always a good thing. I hope I am half the mom you are.
Whoops, you had a little typo there: “Otto and I went out and sat on the porch swing” That should be “set on the porch swing” of course! May the silly things keep sneaking up on you. And hopefully some of the hard things will dissolve.
Thinking of you. And the laughter will help ease the hard things. Not erase them, but soften them.
Oh no! I’m so sad for Monkey and Chickadee. Disappointment sucks. I really hope that you really did figure out Chickadee’s skin connection (although I have to say, Hello? Doctors? Mir’s not a doctor, so why couldn’t YOU ALL figure it out? Huh?!) and that they can treat it and she can go to nerd camp.
Time to get a refund from those doctors and use it for Chickadee’s camp costs. As for Monkey, Aspie or not, that would be a huge disappointment for any kid. I have 7 kids and hate being the one who always has to say no.
Mir,
I’m so glad I read this last night. My son was off the hook this morning with his own rigidity and he argued, at the top of his lungs, about how his Dad was wrong, his life was ruined, there is NO changing the rules, etc. While I have empathy for how his brain works, it’s hard as a Mom to deal with and you do it with such grace and humility that it inspires me to try to do the same.
Hugs and hang in there ;)
One of your best posts! I have one of those kids too – contorts what is said in his head to match what he wants and then that leads to huge outbursts and “OH my gosh, this is the end of my world” behavior. It’s draining. But the fact that you all got to laugh at the end of the day is a big plus.
Wow. You have so much on your plat right now, Mir. I am sorry.
I hope that you are able to talk things through with Lemur’s mom, and that you find that you DO still have your ally. They’re such tough conversations to have, when as a parent you see your child’s needs diverging. But you and Lemur’s mom have needs that are separate from your kids’ needs, and I hope that you can continue to get that from each other, regardless of what happens with the kids’ friendships.
I feel for you in that I hate when I see my kids’ heartache. I was glad to see how the day ended with some peace and laughter.
I was introduced to your blog by a friend and I enjoy reading.
Yay for laughter and a sigh and a hug for boys who are rigid. The world can be so narrow for them. And you are doing such an amazing job each day trying to support him in it.
To me, it looks like your consultation with “Dr. Google” may be a potential bright spot to look at. If the docs seem reluctant to test, push it, reminding them that it’s YOUR money. And if it tests negative, test again, maybe even through another doc, because the results aren’t always 100% correct. I hope you’re correct, and Chickadee can hopefully still go to nerd camp!
Listening to doctors flail about for a diagnosis is something I’m familiar with, too. We’re taught to trust their vast, superior knowledges, only to find out they are just as clueless as we are, just guessing or leaping to the easiest diagnosis. I’ve needed xanax and/or margaritas to deal with the guilt, anger and repercussions sometimes.
Support and hugs. You’re doing the right things.
What? What? What do you think she has?
How frustrating! Are you mad? I am on your behalf! I would be tearing my hair out too!
The magnet on my refrigerator says,
“everything will be okay in the end. if it’s not okay, it’s not the end.”
I’m so glad it seems like your day ended more than okay.