I was honestly ready to turn over a new “stop whining so much, SHEESH” leaf, yesterday morning. I was. Monkey had been better the day before—I only kept him home another day to honor the “24 hours fever-free” rule—and was ready and excited to go to back to school. I was giving myself every pep talk in the book, in my head. It’s okay. It’s going to get better. Any progress is progress. Keep the faith. Etc.
And then Chickadee woke up with a fever of 102. So apparently that whole “Maybe he just has the flu on top of whatever else is going on” thing was true.
At the beep of the thermometer as it announced that yes, you’ve won YET ANOTHER SICK CHILD… it was the last straw, for me. Yesterday just plain sucked; I fell down the “we can’t catch a break, everyone is sick, nothing ever gets better, WOE IS ME AND MINE” rabbit hole and wallowed there all damn day. Quite thoroughly.
The various phone calls and emails didn’t help.
I finally got to talk to the pediatric neurologist; while his nurse had assured me that Monkey’s scans indicated a deep infection and that could “absolutely be responsible for his recent behavioral issues,” the neurologist told me in no uncertain terms that he believed we were looking at a chronic mastoiditis that may have been there for years. And he doesn’t think it has anything to do with anything.
He then went right back to the safe we-don’t-know-what-it-is-but-have-you-realized-your-child-is-autistic suggestion which all but makes me scream, at this point: He advised we take Monkey to see a psychiatrist. That was about the point where I lost my cool and said that was a SUPER idea, let me get RIGHT on that, oh wait, he’s already been under the care of a psychiatrist… for the last three years.
“What does the psychiatrist say?” He replied, unfazed by my obvious annoyance.
“He’s the one who referred us to YOU,” I answered, half expecting him to tell me there was a hole in the bucket in response.
“Oh,” he said. “Well, we can run some more tests….” He told me his nurse would call back with instructions.
In the meantime, the pediatrician called to discuss the impending referral to an ENT about the mastoiditis, and she, too, (very gently) reminded me that even high-functioning autism isn’t super well understood, and maybe this is just… Monkey.
“Look,” I said. “I get that there are sometimes idiopathic seizures with autism. I get that behavior changes. But I am telling you that over the course of two months he has become a different child. AND he had a seizure. And I am starting to feel like the guy in the Twilight Zone episode who’s screaming about the monster on the wing of the plane and NO ONE WILL LISTEN. It feels like everyone would like me to shut up and go away and I can’t do that. Something is wrong. I AM AWARE that he’s autistic. I am also painfully aware that this is a series of sudden, dramatic, and scary changes. Don’t tell me that if you were in my position you would just shrug and accept it. You would not.”
She told me that she “heard my frustration.” Which I think is doctor-speak for “please stop yelling at me, crazy lady.”
She promised to be in touch with the ENT appointment.
The neurologist’s office called back with instructions to take Monkey in for bloodwork that afternoon.
I had a three-way email exchange with the county coordinator for… I don’t even know what it’s called… family services, I guess, and Monkey’s no-longer-his-therapist. I have to go to a meeting and petition them for “behavioral support” to potentially get someone who knows what they’re doing to come work with Monkey here at home, which is really what he needs. Of course, I’ve already been informed that because we have private insurance they probably can’t help us. If we were indigent we could get their services for free! But we’re not, and the insurance won’t pay, so I’m not even sure why we’re doing this.
(Oh, that’s right. We’re doing this because my son periodically becomes convinced that people are trying to kill him. Silly me.)
Inbetween all of this I tended to a sick and floppy Chickadee and tried to do some work. Also I went to therapy, and must’ve looked really awesome because my therapist opened the door, took one look at me, and said, “Can I make you a cup of tea? You look like you need some tea.”
Eventually Monkey got home from school and I informed him that we needed to go across town to the lab, and he just lost. his. crap. To be fair: The poor kid has been poked and prodded and he’s been sick for a week and he really just wanted it all to stop. I don’t blame him. But on the other hand, do you think he was freaked out about having blood taken? No, Mr. Needles Are No Big Deal wasn’t concerned about that. He flipped out because I told him he was going to have to pee in a cup. Apparently THAT was not okay. He ranted for a good ten minutes about how that was JUST CRAZY and there was NO WAY.
Then I took him to the lab and made him pee in a cup, because I am a heartless monster.
That, of course, was upsetting enough that then he freaked out about the blood draw, too, and it didn’t help that they didn’t get it on the first stick and had to try again. I chattered on with as many soothing words as I could find, and smoothed his hair and told him how brave he was being, even as he scolded the techs that “you clearly have no idea what you’re doing” and “you must enjoy torturing little kids.” FUN!
Five tubes of blood later, that particular nightmare was over. I can hardly wait for them to call and let me know they didn’t find anything and HEY, BY THE WAY, DID YOU KNOW HE’S AUTISTIC and therefore you should shut up and accept anything out of the ordinary?
Otto has been sick for a few days (not as sick as the kids, but still), and Chickadee is miserable, and Monkey’s stomach is being torn up by the antibiotics he’s on, so last night I put the kids to bed and looked around and realized that OBVIOUSLY as soon as everyone else is better, I am going to get really sick.
This prompted a flurry of Christmas-present-wrapping which confused my darling husband, a little, but I explained between packages that if I didn’t pull everything out and deal with it now, chances were excellent I’d be in bed bemoaning my lack of foresight. (My fingers mistyped that as “foreskin,” just now. So far as I know I have NEVER bemoaned my lack of foreskin.)
I pulled things out of hiding in my closet and squared up piles of items and made sure I found everything I’d squirreled away in there over the months and then I did the worst wrapping job in the history of present wrapping on everything.
“You’re wrapping like ME,” Otto commented, watching me give up on squaring off ends and just kind of smash all of the paper down and beat it into submission with half a spool of tape.
“Yeah, well, desperate times and all that,” I answered, moving on to the next unfortunate bundle of crumpled paper. I wanted to add that it’s the thought that counts, meaning the fact that I thought to wrap everything before I got sick should totally get me some points, but whatever.
There may or may not be a giant LEGO set in one of those packages. I didn’t write HEY DID YOU KNOW YOU’RE AUTISTIC AND I LOVE THE SNOT OUT OF YOU? on it, but I’m not gonna lie—I was tempted.
Also, when Chickadee saw the stack this morning and asked if those presents were for them, I told her they were all for me. She blinked up at me, fever-bright and confused, and asked me if I’d spent the evening wrapping up gifts FOR MYSELF, and I told her I most certainly had, because that’s just the sort of person I am.
“Yay, Mama! Look at all that—you were good this year!” cheered Monkey, clearly delighted.
I had to laugh. Maybe this particular chapter of suck will turn out to be one of those “right regrets” I’m always talking about, after all.
Oh lord sweetie. Do you think for Christmas Santa would bring you some Xanax? So you could float around in a stress free fog for a couple of days? Just for a couple of days mind you, ’cause I know you wouldn’t want to be out of it forever, but just enough to take the edge off.
I sincerely and most fervently hope that you don’t get sick. Sick at Christmas is the worst. And I will continue to pray that you get some answers.
Now, I have a suggestion for you, and you may think it’s kind of out there, but hear me out. Has it ever occurred to you that Monkey is autistic?
O. M. G. Mir, you are doing such a great job. You are hanging in there and you are advocating for your child and you are tending a sick family, and holy hell, you are even managing to keep your sense of humor. Giant, gooey hugs to you and I hope the medical professionals in your area get their act together soon. Hang in there.
I keep sending hugs to you. Drink plenty of fluids proactively, and eat some fresh fruit. Eat some spinach too.
I was nearly in tears until I got to the part about you being ok with your foreskinless existence and then I spit out my tea.
Hang in there, Mir, this is going to get better. It will. (it has to, right?)
I’ve run out of ways to say I’m sorry, I’m thinking of you (all of you), I hope things get better (and sincerely believe they will), I hope you find answers and the people you need right now to get to good again.
But I do, I really, really do.
Really, would it be so hard for these doctors to just offer up a little hope? Everyone agrees he has mastoiditis – is it completely implausible that it started two months ago, or that it got worse two months ago and caused these changes?
It’s going to be okay. And I have to smile at the image of you frantically wrapping. I would do the same. You need to seize control wherever you can at a time like this. Here’s hoping the wrapping worked as a talisman to ward off any sickness for you.
Mir, I love you. I love how you are able to, despite the world falling apart around you, are able to find humor in SOMETHING. You give us ALL hope. I am so sorry that things are literally crappy around you right now. There are so many people out there in cyberspace that would give ANYTHING to be able to take all the crap away from you. I wish I could, and I know others do to. I know things will eventually get better. I hope the process starts today. You and I both know that we can’t promise that, but we can have hope, which is sometimes all we have to cling to. Thinking of you….
Xanax. Xanax. Xanax.
You are so right on and good for you standing up to the doctors and nurses!!! It is so infuriating when they don’t take time to stay on top of THIER patients and now that you are on top of everything and WTF why do they want to use the autism spectrum as an excuse for every single thing that goes on with our kids! I’m sending you hugs, I wish I could hug you, bring you a cup of coffee with some rum in it and help you smash wrap presents.
You’re pretty.
I, for one, am mighty relieved that foreskin thing isn’t a problem for you. Phew!
Um, you are totally allowed to lose.your.crap. at any point. To have all this coming to a head is insanity; to have it all coming to a head at the holidays is just over the top. Perhaps a meteorite will come visiting through your roof next. Or the plague. Or distant relatives from hell. If you don’t have wine in the house, I strongly suggest an errand today.
Oh, and like Hally says…you’re pretty.
Oh sweetie. I get it. I mean, part of it. I just couldn’t put Em through any more tests when she pleaded-“No more doctors, momma. No more tests.” Broke my heart. But, we had already ruled out most everything with the basic answer being ‘Wow, that is weird. Hmm, don’t know what it could be.”. There is definitely SOMETHING different going on with Monkey that is NOT OK. Keep pressing. Be a mamma bear if that’s what it takes.
Also, the present wrapping-ha hah ahah ha ha. I love your Q & A. Your kids are awesome.
I agree with Anna Marie! I was in tears until the foreskin part then laughed so hard that I was crying my eyes out!
Sweetie, that was similar to my December last year. Between dealing with a sick family who all had the flu and then a stomach virus a few weeks later, dealing with and accepting the fact that my dad was too sick to do christmas cookies which was a tradition since birth, dealing with my mom who was losing it caring for dad, and add 20 inches of snow (which we NEVER get) with an asthmatic cough that ended up with broken ribs from shoveling and having a coughing attack at the same time…yes all of this just days before christmas. I remember spending christmas crying in my kitchen from the extreme pain and stress.
But on the bright side, this year was better. So there is hope. Did everything get fixed, nope. My dad is worse this year, but we take each day as it comes. But it is still better than last year.
Super big hugs to you! I hope santa brings you some peace, some wine, and some chocolate. You deserve that and so much more.
PS: stay healthy!!!!
Wish I had some lolcats for you… something fun and light that can be enjoyed with a minimum of brains.
Might I suggest taking an hour, firing up the Roku, and watching a good comedy special? I know it doesnt help in the grand scheme, but unplugging for a bit may do wonders…
Or maybe a bit of Mike Rowe and his elegant sarcasm and wit…
A break that involves no traveling and even less people. Sounds like a good plan.
I’d have a word with the fates for you, but I think they are tired of me bitching at them on my own behalf to listen. At least the thought is there.
As Doree might say…. “Just keep swimming, just keep swimming, Just keep swimming, swimming, swimming…..”
I really hope they figure out what the hell is going on with Monkey soon. “When your heart becomes tired, just walk with your legs – but move on.” ~Paulo Coelho
hugs to you and your family. so glad you can laugh amidst the medical chaos. keep pushing those docs. moms know when their kids are ailing — autistic or not.
Hey, Im kind of right there with you AGAIN. Except our neurologist appointment ended with this: “This stuff sometimes happens. Everybody is allowed one “episode”. Call us if it happens again.”
Which relieved me a lot, but also worried me a lot.
Doctors are confusing.
You’re doing such a great job. You really, really are. Just keep going – it’s going to be better when you get to the other end of this thing.
You deserve a week in the rabbit hole if you want one. I know you don’t feel inspirational right now, but Mir, you are, like, SUPER MOM. Just saying.
I could send you some buckeyes if that would help????
Hey, something else we have in common! I’ve never lamented my lack of a foreskin either.
I am just so frustrated on your behalf. WTF is wrong with these people? As if informing you that Monkey is autistic is going to suddenly make you not upset about the changes you’ve seen happen lately? Argggggggggggggggggh.
I think we should all put together a care package that includes chocolate, liquor, Xanax, a decent doctor who will listen and help you figure out what Monkey needs, and a pony.
Aaah, Karen’s “Xanax” response struck me as something shiny. If only I could find a decent doctor that I could actually discuss such things with, but I always end up with idiot doctors I have to break up with. I’d think it was me, except I’ve LOVED the 2 ladybits docs I’ve had in my life.
Now if I could think of something significantly shiny enough for YOU, dear pretty Mir, you really need it!
Yikes, Mir, I *almost* hope you do get sick…at least you would be forced to take a break! **healing hugs to the entire Mir family**
You are a Mama Bear with those docs. Way to go! And, sorry you have to be. I’m continually surprised at how myopic some docs can be..if they’re smart enough to Be a Doctor, you’d think they’d be curious and interested enough to Find a Solution, or in Monkey’s case, find the problem. Keep fighting. I think many medical professionals are so busy that it’s easy to let patients fall through the cracks. The sqeaky wheel gets the grease! (And also gets exhausted and frustrated, so that’s no fun.) It feels weird to send up prayers for someone I just read on the Internet, but I’ve been doing that. Prayers for strength and encouragement and hope for your family.
Oh my God! I would have completely lost my shit by now if I were in your place. I feel for you. I was in that place you are with Monkey a few years ago but it was regarding my own health. I was basically told it was stress, depression, and I would always feel like crap and to just suck it up and take more scary meds already. I know how hopeless I felt and it was just my health at stake. I can’t even imagine if It was my kid. Wow. I will keep praying for you. You keep fighting the good fight. I so wish I could do more. Oh, and I feel much better now. I’m only hoping you find answers too.
I say start taking a mini-recorder into each meeting with the doctors, and let them know you are recording the visit. If they ask why, tell them ” My attorneys want me to have it on record if you say anything really stupid or unhelpful. The AMA is getting tired of complaints and wants to make an example of someone. Don’t be that someone.” If they did not want to help people, they should not have become doctors. I hope everyone is feeling better soon, especially you, Mir.
Does anyone know better than you why they call it “practicing medicine”? Here’s hoping that someone – anyone – soon reaches a level of competence that allows them to find some solutions.
Oh, my lord, Mir. I wish I could help carry the burden for you a little bit, even just for an afternoon to give you a break. Instead, you get cyber-hugs, lots of good thoughts, and good thoughts being sent your way.
Oh, and one goofy mental image: all I could picture with your description of your wrapping frenzy was you turning into a green monster and yelling “Hulk wrap!!!”
Mir, your strength throughout this whole thing is amazing. I would have broken down weeks ago! Fingers crossed that you do not get sick!
Also, screw the drs…this is your son. I’m like you, I would keep prodding and poking at everyone until I got some answers!!!
Hugs, dear Mir. Hang in there.
I have no idea how you manage to be so hilariously funny when life sucks so bad right now, but keep on trucking. I pray things improve soon.
A doctor told me once that it was very common for a busy mom to harbor a virus until she had “time to get sick”, which in this case was the minute I dropped the balls I’d been juggling and relaxed at my own mom’s house. You are wise to plan ahead!
You are DUE for some good news and a break, it’s coming soon, I can feel it! Hang in there.
I too would make you tea, or try to do anything at all that might be at least remotely calming/soothing/helpful. Also, hugs.
Chronic mastoiditis? REALLY? If mastoiditis is suspected, it’s actually very easy to diagnose/confirm, in about five different ways. CTs, MRIs, shining a light in the ear, palpating, looking for signs of hearing problems….. they all contribute to the cause. Even *before* heading to an ENT, since he’s actually HAD a bunch of scans already. So either his doctors can’t do a physical exam worth nuts, or he actually doesn’t have mastoiditis. Imagine that.
I can’t even imagine how frustrated you are. You’re doing the right thing for Monkey, advocating for him like this. As someone who’s going to be a practicing doctor soon enough, I’m actually rather embarrassed by the behavior of the doctors you’re dealing with…. I really do hope I have more compassion than they do.
Ok, let’s start off with the obvious…I like your hair. :) (the other brilliant readers around these parts already covered the fact that you are pretty)
Secondly, I ABOUT LOST IT when Monkey was yelling at the lab techs. Priceless.
And also, I am sorry that you are going through this crud right now, but those two kids have the best Mom taking care of them. You are keeping your humor–at least some of it…you have a therapist on your side…and Otto to give hugs at the end of the day. :)
Thank you for sharing a corner of your world with us.
Mir, I’ve read your blog for a long time and feel as if I’ve seen Monkey and Chickadee grow up right alongside my own flesh-and-blood nieces and nephews! I’ve never commented before, but I think now’s the time! Your strength as a mom, and a person, is amazing and inspiring. Your fight and ask and plead for services and navigate the maze of frustration and dead-ends that is an unfortunate reality for families of kids with any sort of special-needs. Monkey and Chickadee are so fortunate to have such a mom who is champion for their rights!!!
AND somehow you do it all with with remarkable wit and wry humour, managing to not totally and completely lose your S*$#! Go you!
I’m with MamaDragon. I have had only a couple of instances in my life when HELLO, YOU ARE NOT DOCTOR DOOM.
I had a very basic, run of the mill miscarriage and the midwife thought it would be helpful to share with me that I could get sepsis and die. Wow, because that felt very comforting to me.
The other time was in the diagnosis process with my daughter. One doctor was very nice and told me that it might be the BIG C (cancer) but she didn’t want it to be that. Another doctor, with the real diagnosis, told me all about how long her medical issues will last and how bad the side effects of the medicine might be down the road. Nice.
I do believe this is temporary, Mir. Be like Cliff Hanger and just hang on a bit longer.
Mir, you sound like you’re doing an awesome job dealing with everything going on. I realize that’s probably small comfort right now but I think you’ve earned a lot of Supermom points this week.
I don’t know how you do it, Mir. You always seem to know just what to do and when to keep pushing and fighting for your kids and what to ask for and when to just stop and wrap some presents. You are inspiring to everyone and yet just real enough so that we don’t hate you. :) So here’s what I think you should do: tell yourself how amazing you are, and then take a nice. long. nap. Whether or not you have time. For every half hour you sleep, think of it as one entire day you won’t be sick later. You have done SO MUCH and lived through SO MUCH this past month, damnit you deserve a nap. Think of it from the days with newborns when everything and anything was flying at you: sleep when you can, while you can. It makes everything else seem a tiny bit more do-able later.
Just so you know, at this point in this series of events, I would have been put in 4 point restraints for quite some time. You wrapped. Not well, sure. But it beats being dragged away with a big net which is frankly where most people would be after what you’ve been through during a season which people find stressful anyway (people who have not been what you and Monkey have been through, redefining the word “stress”) You do need some tea.
well…at least you got some wrapping done? I don’t know what to say other than you are a better woman than I, since I would be under my covers, curled up in a ball and crying for mommy while eating a large bag of M&Ms.
As others have said, sending you any comfort possible and know you are just an amazing, strong mother. Keep pushing for answers, don’t give up. And I hope you find small moments to catch your breath and enjoy your family.
Holy god in heaven. You are doing it perfectly. Keep on swimming and whatnot. I will say a few extra prayers that you can just not have to swim much farther to get the answers.
As a completely random aside, you actually do have a foreskin. It’s your clitoral hood. The female clitoral hood and the male foreskin are formed the same way in utero and are both called the prepuce. There, something to take your mind off of the drama for a minute. ;-)
Santa would totally NOT bring you the flu for Christmas. He just wouldnt.
So this…this….”funny” you are right now, is that hysteria? :D Because most of this post was hilarious! I especially loved ” just kind of smash all of the paper down and beat it into submission with half a spool of tape.”
Here’s to a brighter tomorrow and all of that crap ;)
Love ya Mir!
“you clearly have no idea what you’re doing†Hahahaha!
Now then, let me gently yet sternly remind you not to talk yourself into illness. Repeat after me: I am healthy, I am whole. Repeat, and repeat again.
No Autism here (at least to my knowledge) but thanks for reminding me about the HORROR of the pee cup. The only thing that tops it is when they LOSE the specimen and then you have to give them another one. Fond memories there… The upside is that things do get better. Really! The New Year is just around the corner – hang in there!
That sucks. I wish I could do something for you. I wish i could help.
There’s a reason they call medicine a “practice”.
Oh sweetie..hoping you get a doctor who is ready to stop tell you the blatenly obvious and HELP you!!! Oh…and your beautiful little monkey had me at Yay, Mama! LOL – I laughed so loud I think the rest of my office thinks I’m a loony toon :)
Have you ever read the New York Times Diagnosis column? You might find it reassuring that with enough perseverance (and yelling like a crazy lady) doctors will find an answer.
Aw hon, my heart just aches for you, such a difficult time your having. I pray that you will get some answers soon. You DO deserve a bundle of presents.
Oh, honey, I am so sorry. The world of the medical establishment, and its friend, insurance, can be so out of whack with the emotional realities of parenting a fragile child. And to state the obvious, you clearly haven’t had a break of any sort. I hope that breathing room comes for you, whether it is a chance to have your own bubble bath, to watch silly TV or just time to drink tea in peace. Best to you and your family.
OMG. I had the opposite problem. We kept being told that our kid was autistic or adhd, and we kept saying he was depressed.
Hang in there…melting down is totally fine and appropriate. And in case I haven’t said it…thank you for writing about this. It helps to find other parents who are going through the “wtf” with their kids and the medical community. We’re further along the journey…but reading your story really, really helps.
I do believe that Monkey’s response is the sweetest thing I’ve read on the internet, possibly ever.
Oh my goodness! I’ve had Chronic Mistyping Syndrome since coming back to work yesterday (I was out for a family emergency, then a funeral, and then, oh yes, we got stuck in a freaking blizzard for two days on the way home), and I’m getting fed up with not being able to type. Grrr.
By the way, on my way into your blog, I noticed how pretty and spectacular your shoes by the door were. ;)
How do you do it Mir? How do you always manage to end the tough times blogs on a happy note? (Yeah, I know you didn’t blog yesterday but still!)
Hers’s hoping the flu clears out quickly, bypassing you altogether. Hopefully the high stress level will pay off by warding it off. You are brilliant for wrapping the presents now! I would have just vegged out in my recliner and escaped to TV land …
It’s really annoying that the medical system, both sides of the border, requires constant Mama Bear theatrics to get anything done. Hang in there! You’re pretty!
Well, I was having a very well-deserved pity party, because I lost my iPhone while I was out shopping today. My day doesn’t even begin to compare to yours. Praying you find an answer for Monkey, Chickadee gets better quickly, and the flu fairy misses you completely!
Is it callous for me to respond to your genuinely sad tale with a big thank you for finding the plan toy deals over on Want Not? Can we just agree the answer is no and assume there is much sympathy mixed in with my gratitude? Great!
I could totally see myself suddenly wrapping presents in a frenzy of worry and frustration like that. Except I would be doing it in tears while insisting to my husband that I am TOTALLY rational and normal. Or maybe you were in tears too. In which case, I hope a crazy freakout was a cathartic to you as it would have been for me.
mir – you’re awesome. and your kids are so lucky to have you. and monkey’s right – “Yay, Mama! Look at all that—you were good this year!â€
and, not to complain about your common-taters, but j from ireland obviously doesn’t know that irish folk should use the word “wee” whenever possible. when my irish friends say “wee” it makes me happy. even if used incorrectly – like if she were to say wee instead of pee (as in the wee cup) it would be happy making.
I know I’m going to sound like one of those natural-is-best people, when, really I generally love western medicine, but I’m telling you, order some Elderberries (Google them), heat 1/2 cup with 2 cups water and 1 cup of frozen raspberries. Drain out berries. Add honey to liquid. Drink 2 teaspoons a day. I’ve never gotten sick less than I have in the past year. Same with my kids. And I know it’s the Elderberries.
Hugs to you.
Bless your heart… I hope you survive this season!
Right after my oldest son turned 3 he went all wonky. His personality completely changed from a mellow, happy guy into this kid that was sad all the time and threw screaming, hysterical tantrums that he could not calm himself down from that lasted an hour at a time. There were a bunch of other behavioral things that went along with that that I won’t detail here. As his mom it was frustrating and sad and demoralizing and lasted an entire school and into the next one. And since it was almost totally behavioral most of the doctors didn’t take it seriously and told me it was nothing. After many, many different doctors and different tests he was diagnosed with a chronic low-grade sinus infection (that probably was causing some sleep apnea which was making him exhausted all the time) and after he was treated his behavior and sleep went back to normal and I got my sweet, happy baby back.
The point of all that rambling being that it’s total BS that the doctor is writing off the idea that the mastoiditis or some other medical issue is causing such a sudden change in Monkey’s behavior. My son isn’t on the autism spectrum, but he has some sensory issues that cause him to act like Monkey in that he rarely registers as sick or hurt. So when it gets really bad rather than saying “ow” or “I feel sick” his behavior gets crazy and we get to play guess what hurts. I’m sure you know this but I wish that someone had said it to me more; you know Monkey best and if you think something is wrong then you’re doing the right thing by taking him to doctors and having the tests, and bugging people to pay attention and figure this out for him. You’re an awesome mom and pretty too!
Have you ever considered joining a yahoo support group? There is one called Homeschooling Aspies (and I KNOW you don’t homeschool) but there is a TON of women and some men on there who deal with the seizures with their Aspie children. The list owner, Nedra, is amazing with info. I KNOW she has helped a hundred people find out what is going on with their child. She is NOT a doctor, but she has walked the path and is willing to share her knowledge. Again, it’s a yahoo group called Homeschooling Aspies. I can give you the contact info for the owner, who I KNOW would be willing to help you, if you will email me privately.
Hang in there, you are NOT alone.
Lots of love to you!
Mir – You are so, so pretty. Hang in there and keep fighting for Monkey.
You are right! You are the MOM! Keep fighting for him. He deserves the best and more. And I will gladly wrap presents for you anytime. Really – not a problem…. Lots of love Mir.
Dear Mir,
I completely identify with the advocacy for Monkey. As you may remember, I took my 15 year old “son” into custody back in March of this year. I was elated. Unfortunately, they don’t inform you of the small fact that if you have a child, like mine, who has psychotic breakdowns that are frightening, you have no choice but to advocate.
Sure it would be easier to just let them do what they do. Absolutely it would be less frantic to ignore the pains, angst, challenges, medications, doctor’s appointments, and all that jazz. BUT! It’s what has to be done. It is done out of love. It’s done because doing the right thing is hard sometimes.
I am not meaning to discount anyone else’s good intentions at all. I have no deep dark anger towards the well meaning people. I say that because I don’t want fifty people yelling at me again.
I’m not a saint. I’m not an angel. I’m not perfect. I’m not anything but a human whose child didn’t get dealt with a fantastic hand in life. It is my job, as his mother/guardian to make sure his life meets three criteria. He has to be healthy, happy, and safe. If any one of those aren’t being met, then it is my lucky position to be able to fix it. Sometimes I can’t do anything but cry. Sometimes I get frustrated with the multitude of phone calls that are both incoming and outgoing trying to fix things. Sometimes I wonder why in the world I couldn’t have a “normal” child and then promptly feel guilty.
The bottom line is that despite the challenges, I’ve grown stronger as a person, as a woman, as a mother, and as an advocate. You are too. You can do this because of love. You can do this because you don’t have foreskin. You can do this because you were so good this year you have tons of presents and Monkey is HAPPY for you. You can do this because when they come and snuggle up to you and you get to smell their hair and caress their cheeks…it’s all worth it.
Much love to you Mir. Keep the faith, and if you think you’re losing it, break some dollar tree plates and make a mosaic.
oh, mir, sounds like you have been through the wringer several times over. i think you should let monkey talked to the “experts”, he seems to know how to deal with those types! hugs and best wishes to you and your family. if you lived in edmonton, ab, i could hook you up with some govenment-paid, in-home support for monkey. good luck!
Hi, Mir. I am behind and catching up but I wanted to thank Monkey for telling the person taking his blood he/she had no idea what he was doing. I want to do that all the time, but you know, can’t. So thanks from me, Monkey.
And then I laughed out loud at the foreskin foresight! Ha. Hang in there, mama!