I meant to come back yesterday and talk a little bit about what the ENT told us; we are reaching the end of the “first line” treatment plan for Monkey’s infection, and while I adore the ENT, I think he was unprepared for Monkey’s reaction when he said, “Well, if this doesn’t work, we go to surgery. Oh, don’t worry, we just drill a little hole in your ear and—” Yeah. Monkey—shockingly!—is not interested in letting the good doctor take a drill to his head! Go figure! He voiced his displeasure with this plan, yes indeed.
Basically, we can’t SEE the infection in the mastoid/sphenoid areas without a head scan, but what we CAN see is that he still has a tremendous amount of fluid in his ears and just looks like crap. So we are “following the protocol” and trying one last antibiotic for two weeks, and then it becomes a surgical matter. My understanding is that they would also get up into the sinuses to see what’s going on there, you know, after they drill a hole in his ear. Though Monkey’s general reaction to even the idea of surgery tells me we may have to drug his milk and toss him in the back of the car, A-Team-style, even to get him to the hospital for it.
I was going to tell you all of this yesterday. But then I got a phone call from school saying that Monkey had been suspended and I needed to come get him.
And this is where I tend to shut down and shut up. What is there to say about this? How do I explain what happened here without sounding like an oblivious parent who thinks her precious snookums can do no wrong?
Let’s start with this: He did wrong. He did WAY WRONG. He hurt another child, and he hurt his parapro. What he did isn’t okay with anyone, most especially me.
On the other hand: This is a kid with a trail of paperwork a mile long because he has a certified disability that makes this sort of thing more likely if he’s not given proper support. Was he given proper support yesterday? I don’t know. I tend to think he was, to the best of the school’s ability. Sometimes things escalate fast and proactive is tossed out the window in favor of immediate damage control. I get that.
This is where Monkey’s reaction to illness makes me want to tear my hair out. Monkey very rarely runs a fever. It’s how I knew he was sick when he had the flu—he had a fever. But this head infection thing, he’s had that for MONTHS. He HAD it for months WITHOUT COMPLAINT. And it’s clearly making him feel terrible, but he doesn’t process that like a neurotypical person. He doesn’t—or can’t—say, “Hey, you know what? My head hurts. My balance feels funny. I feel dizzy all the time,” or whatever. He says, “I feel great! I’m fine!” And he’s not fine.
We’ve come to believe that the downward spiral of his recent behavior is directly linked to this infection. Being sick makes most people irritable and less able to cope with stress. My guess is that if you already have sensory sensitivities and a limited capacity to deal with stress, sickness really magnifies those shortcomings.
But he doesn’t have a fever. And he isn’t complaining. So I’m keeping the school in the loop as much as I can and still sending him.
And yesterday he completely snapped. And the principal said there was no choice but to suspend him because of the “seriousness of the matter.”
Could we fight it? Sure. Legally, it becomes very dicey to suspend a kid who has an IEP. The argument can be made—and has successfully been made by plenty of parents before us—that he’s being punished for his disability, which is a violation of his civil rights.
Honestly, I care fuck-all about his civil rights at this point. I care that he is sick and miserable and unable to control himself and so deeply ashamed by his own behavior. I care that school is so stressful for him that he had a complete and total meltdown, an epic panic attack that resulted in violence, and that I had to spend half an hour in the office with him and the guidance counselor, talking him down off the ledge, afterward.
There is this moment, with Monkey, after these incidents, that breaks my heart every time. He remains SO ANGRY, so convinced he was RIGHT because he was IN DANGER, and he blusters and rants and maintains his innocence (or maybe it’s more a position of self-defense; regardless, that he did what was necessary), often for a long time. And then the moment comes where he’s calmed down enough that he suddenly realizes. He realizes what he did, and realizes that what he thought in the moment was wrong, and you can watch his face as it dawns on him that, “I did it again.”
And that’s when he crumples and starts saying the things that no one should ever have to hear their kid say; that he believes he’s a monster, that we should lock him up, that he should kill himself.
Anyone who wants to tell me he’s “perfectly capable” of controlling himself can first sit through the crumple stage afterward, and if that doesn’t change their mind, they can, second, kindly go fuck themselves.
So I didn’t fight the suspension, although I made sure to mention that I was aware that’s an option available to us. “Honestly,” I said, “what this is doing is making me realize that he needs to maybe stay out of school until he’s not sick anymore. But can we do that? Keep him out for two weeks on these meds, and then maybe longer after that if he has surgery? How would that work?”
The principal was unsure. I think the principal was mostly very worried that I was going to sue the school or otherwise make a big stink. (I’ll get right on that in my copious spare time!)
I was polite. I was apologetic. I made it clear that while I understand the seriousness of his behavior, it is also clear to me that the school is failing to meet his needs. But I was not there to FIGHT or to WIN. Clearly we’ve all already lost.
Monkey came home and went straight to bed and slept for two and a half hours. Later his parapro came by with some work for him to do on Monday (truly, if I haven’t said it lately, that woman is a SAINT), and he walked straight into her arms, laid his head on her chest and closed his eyes while they hugged, and whispered, again, that he was so sorry.
The weather forecast here is dire; they’re calling for snow and freezing rain Sunday/Monday, and no one seems to know what happens if school is canceled on Monday—does that mean he can’t go to school on Tuesday? Do I even WANT to send him to school on Tuesday?
Whatever storms are swirling around in that head of his, I have to cling to the belief that taking care of this infection, finally, will make things better. I have to believe that things are so much worse because he’s sick. Because if that’s not true—if we finally get him healthy and whole again and his behavior continues to be this erratic—I’m not sure any of us are equipped to meet his needs.
Hugs. Just, hugs. For everyone.
I’m so sorry. I praying for peace and that Monkey’s infection heals soon. Lot’s of hugs. Thank you for your bravery in writing about this difficult situation.
Oh Mir. Oh Monkey. I don’t know what to say other than to just give you all giant ***hugs***
Aw. I am so sorry.
Oh, Mir. My heart is hurting for you. I’m wishing you strength. And praying this antibiotic works.
(((BIG HUGS))) to you and Monkey, Mir. I can’t totally relate to everything. All those thoughts and questions have been through my head many times as well. I wish there was an easy answer.
Oh hugs. Oh my. My heart aches for you and with you and with him.
It may be worth checking into a homebound program for Monkey for awhile – where the school provides and supervises the work, but he doesn’t have to deal with *school*.
And that would allow him to get the chance to get better physically.
From your description? His behavior is totally and completely tied into this infection.
I will be praying for him, and for you, and for the school and his teachers to find a way to incorporate him into the school without more stress to you and him.
Everything else I type sounds bossy, so I’ll be quiet now.
Oh Mir. I’m so sorry. Hugs to you and Monkey.
I really just want to send you all love throughout this whole thing, and tell you that I think you’re an amazing mom.
I’m so sorry. I hope he returns to his “normal” wonderful self once he’s cleared of this infection. You are so right that being sick and not feeling well makes the average person miserable. I’m having some hard to diagnose medical stuff going on and it’s driving me crazy. I feel like crap, am stressed it won’t get better or it’s something more serious than they are leading me to believe and I’m solo parenting while my husband is deployed. I’m not a fun person to be around right now. Hopefully this new antibiotic will kick it but if it takes surgery, you are all strong enough to get through that together. Wishing you the best…
I’m sorry to hear how much you and Monkey are going through. My heart goes out to you both. I hope you find answers and solutions soon.
Mir, a regular reader but infrequent commenter. I’m keeping your whole family in my thoughts. I’m sorry this is such a sucky time. I wish there was more I could REALLY do (despite being a complete stranger states away) other than pray you find some solutions soon. Huge Hugs.
I worried when we didn’t hear from you yesterday that something not-good had happened. I’m sorry. Let’s hope this new antibiotic is a miracle drug.
My sympathies. The magic words for the school are “Home-based education”. At least until the infection is sorted out and Monkey is able to cope better. A teacher will come out to your home for a few hours a week to work with him until he is able to return. If he receives any related services (I hope he is at least getting occupational therapy with sensory integration — that made a world of difference for my daughter) they will also continue.
I hope everything resolves soon.
Hugs Mir….Thinking of you….
Oh Mir…I wish I had some sort of concrete help to offer you. I send you many happy thoughts and prayers and love for you and your whole family. <3
I hate to say, but I have been where you are, with R. (well, the suspension part, the hurting the other kid part, the hurting the parapro part (hurling tennis shoes? check. kicking? check. hitting? check.) the guilt part, not the mastoid infection part)…
when R starts to get sick, she too, starts the behavior things – that’s often a clue to us that she’s getting sick, because like Monkey, she will say she’s FINE when she’s not.
unfortunately, I know that if school is called off, the suspension must be served the next day that school is in session. So yeah, if there’s no school on Monday due to no school, he can’t go to school on Tuesday – that’s the day he’d serve his suspension.
I would seriously look into the homebound thing as well. I would think with all the medical issues he’s had over the last few months, that he would qualify. I know you’d considered homeschooling in the past – this may be a step in that direction, but the school would provide the academic work that his class is doing. There have been times in the past (on days when R was suspended and we had her work to do) that she breezes through the work, because we sit right next to her as she does it. So much better for her than having all the distractions of a busy classroom and a window to look out and one teacher in the front trying to explain an assignment to 30 kids, and though there’s the parapro, she can’t sit directly at his side & keep him focused. I’m willing to bet he would do amazingly well with homebound work.
huge hugs for you and monkey, otto & chickie too!
XOXO
The crumpling part just makes my heart seize for you. Go antibiotics! His sickness has got to be exacerbating things. It’s got to.
Agree with the others on homebound education…at least temporarily. And he can still participate in any fun activities.
err…fun after school activities I meant
You DO have another option while you allow to stay home and heal. It is Homebound Teaching. Someone from the district comes to your house and teaches your child. He is eleigibe for this because of his IEP. I know of kids with epilepsy, cancer and I think in your case would be a reasonable request.
I truly feel for you and your family and while our situations are different the feelings are identical. You express it so well.
Hugs!
Melissa
Thinking of you and your family at this time. Knowing there’s nothing I can do but send positive hopes and thoughts your way.
Poor Monkey. And poor Mir. I have no words. Just a wish that there were some way for everyone who cares about you and your family to carry a small piece of your burden, making it a little lighter.
First, your parapro does sound like a saint. You are lucky to have her!
Mir, what are the rules in your state about homeschooling? Some states are more lenient than others. Can you talk to the school and set up for you to homeschool while he is sick and then recovering from surgery? That way he gets to stay home while this is all going on, yet it isn’t used against him. (some states have strict rules and this won’t work for you for this short time, but other states will easily allow it). Maybe you can get the parapro involved in some way too if so? Could you pay her to come to your house to help? We had a child in our school last year that can’t come to school during flu season or when he is sick due to health issues. So one of the teachers in the school would homeschool him after school for 1.5 – 2 hrs a day to keep him up with his class. plus mom would work with him too.
Take one day at a time (I know, easier to say when you aren’t dealing with it) and don’t dwell on the “what if…”. Believe me, this is something I need to do too. It isn’t easy. But it will allow you to deal more with what is going on now.
I really hope they are able to help him soon so he can start feeling better. Hugs to Monkey and you.
PS: and being the bitch that I can be ;-) I would keep him home Monday and Tuesday just because I felt like it ;-) He deserves a day or two off regardless of the suspension. Maybe even Wed too ;-)
I’d look into the homebound program – it was my first thought when you mentioned possibly keeping him out a while. That way he could concentrate on getting better and not have to deal with the extra stress of chaos at school while he was sick. I’m convinced that school is more chaotic with the cold weather because too many teachers won’t let the kids play outside and kids come to school sick and all. Plus it might give you some ideas of how homeschooling might work best for Monkey. Good luck and I hope he doesn’t need the surgery!
That medical saying, how does it go? Something like – when you hear hoof beats, look for horses, not zebras. His behavior has changed. Mastoiditis is a very serious infection, and capable of making anyone feel like crap. Put them together, and go with the likely conclusion – this IS what’s causing the problem. Don’t let yourself go down the slippery slope of ‘maybe this is something more serious than what it appears’ until you really truly have reason to think that. :)
Hugs. So so many hugs.
Dear God/karma/fates/whatever….Mir and Monkey have had enough. Please leave them alone.
Mir, does your school have any type of parent volunteer program, where another parent can sit in with you on these meetings and help figure out a way through this? I’m probably not explaining myself very well, but I know here we have a program of trained parent volunteers to act as advocates for other parents (and their kids, of course!) I don’t know if your school does this, or if it would even do anything, but maybe just having someone else there who’s there just to be on your side would help, even a little bit. I’m really sorry you’re going through this, and I hope Monkey’s illness gets sorted out one way or another soon so he can go back to doing as well as he was earlier this year.
My heart aches for you and Monkey and your family. Sending love and hugs.
Oh, Mir. My heart is aching for you. I am sending hugs and prayers that treating the infection will help and you’ll get your Small Boy back. And seconding all the comments about the homebound program.
No WONDER you have a migraine today! Big hugs and lots of love being sent your way.
Oh Mir…..major hugs coming to you and Monkey.
I know that crumple intimately, we’ve gone through the exact same experience more times than I want to recount. It’s the most heart breaking thing in the world to watch them realize they have failed everyone once again and see their frustration and anger turn inward as they proceed to eat themselves alive. That crumple makes my son suicidal when things get so bad he can’t win for losing, and I’m learning to take away some of the expectations and just let him breath until he can function again.
As I’m sure you already know, the school system has an obligation to provide education services at home if Monkey is suspended and unable to attend school. Look for educational advocates in your area, they are wonderful resources and can take a lot of the time consuming stress of negotiating with the school off your hands.
I’m thinking of you both and hoping for answers and peace and understanding for everyone involved…..
It sux for you and far more for Monkey. Hang in there love. He will come back.
So sorry. This wholly and absolutely sucks.
xoxo
I would keep him home until this health issue is resolved. Do the home bound school option if you can… I was in a similar situation with my monkey 3 years ago and didn’t realize that was an option. I would give anything to be able to go back and have a do over. We survived…but at what cost? You and yours are in my thoughts every single day.
He walked straight into her arms… Wah! Got me all teary, Mir. Wishing the very best for your sweet, sweet Monkey. May his life improve dramatically when the infection is cured.
I know someone who went through a sinus/drilling episode, and it resutled in TREMENDOUS relief.
Huge, chocolate covered with the mini marshmallows, hugs all around.
Sending good mojo your way. I’ve got nothing else useful.
I wish I had answers. I wish I could bake you a gluten-free triple berry pie with fresh whipped cream and deliver it with a hug. I’m attempting Root Beer Float cupcakes – I’de be happy to deliver those too for Monkey.
My daughter suffers bursts of irrational anger on occasion from her TBI – once there was a mortifying outburst at a Deli because she noticed the deli clerk was being impatient with me because I’m hearing impaired. The clerk was being rude, but the outburst was rude, – I knew as it was happening and I knew she has no control when the TBI takes over. The filter is gone at that point and there’s nothing I can do put talk her down off it. Slowly. Tell that to the deli owner who just wants the rude kid out of his store. When I broke down crying as I was tellin him to shut HIS rude mouth because YES she was raised with manners and she CANNOT HELP IT at this point, he backed off and apologized, but the damage to all of us was done. I don’t blame him, it’s just the sitation sucks.
SO.. yeah, there’s the pie and the cupcakes. Today, anyway.
I’m so, so sorry. Hoping for better days soon.
Aching for you all.
I know it won’t make anything better but I need to add my voice to your virtual support system. If nothing else, you make it so real that I could never judge anyone for just about anything these days. Love, real love, is in the air for you.
Hugs and love to you and Monkey.
Just wanted to tell you that I am thinking of and praying for you, Monkey and the rest of your family and that I am hoping, hoping, hoping things get better soon. You’re doing a good job, Mir, even when it doesn’t feel that way. You are.
So sorry.
I don’t want to be a clueless person on the internet, but what you’re describing here sounds (to an uneducated observer like me), eerily similar to the posts that Squid, at Leelo and His potty mouthed mom used to post this time of year (though not this year). Squid would describe a downward spiral in Leelo’s behavior and she too concluded that sinus infections that he couldn’t communicate about were a significant cause.
I wish you good advice and strength in figuring out the right treatment plan.
I simply don’t have the words…Thoughts and prayers with you and your family. I’m so sorry things are so hard for Monkey.
so sorry to hear you are all still having such a rough time. I applaud your honesty because truthfully, you open my eyes each Monkey post to the other side of what we sometimes see in a child out of control – it truly gives me a different perspective and more empathy. The crumple part slays me – to know your child is hurting so much is truly heart breaking.
Maybe that para would be interested in a home instruction position? :)
Dear Mir,
People have accused me of being the strongest woman they know. I’m thinking you and I are in the same category. I firmly believe that if we’re as strong as we are, we can handle whatever stuff hits the proverbial fan.
I can handle most everything that comes my way from my son. But from that standpoint, because I was so focused on getting him everything he needed to survive, I forgot myself. Please, dear Mir, be aware that you need the same special attention and care that you’re giving your family. Please remember that if you fall, the whole system goes down the toilet. Remember yourself and your needs too.
In the mean time, I see many people offering up solid advice. You’re a wise woman. I know you’ll do what’s right for your Monkey, Chickadee, and Otto (not forgetting Licorice). Take a deep breath, dear lady, roll up the sleeves, and get to that bubble bath!
Much Love to you and yours.
Mir, I’m so sorry. I’ve been saying a daily prayer for you and Monkey. It sounds like you’re doing all the right things, and you have some awesome advice up above.
Hugs to you!
I’m so, so very sorry. I’m keeping you and your family in my thoughts.
I know many people have commented on this already, and with the caveat that all states are different, Monkey should qualify for homebound tutoring with just a report from the doctor, nevermind his IEP. You do such a good job of relaying your thoughts and emotions through your writing, I feel like I can ALMOST know what you’re going through. With a nod to keeping up a routine and Chickadee’s needs, it seems like Monkey’s self-esteem & health could possibly improve if he was removed from a situation that causes so much stress for him. I also agree with others that you have to be mindful of your stress as well. ‘If Mama ain’t happy, ain’t nobody happy.’ Good luck, hugs and pink lollipops.
I’m so, so sorry for you all. Reading your words brought me back so completely to the most difficult times that my brother dealt with (right around Monkey’s age), but there was never this density of ‘incidents’ – the fact that it’s such a ceaseless struggle right now makes me ache in sympathy.
I’m hoping for powerfully effective antibiotics, and that you can find ease wherever you may while dealing with all of this.
Mir, You need to call your doctor and explain the situation, and get him medically placed on homebound services. I saw someone has suggested this. I am not sure what your state requires for this but I think a doctor can write an order for this. A teacher will come to your house and work with and bring work home for him so he will not get behind. Your are right this infection is the cause and he needs and you need some peace to deal with this illness. And if this infection is the cause of the behavior change, you need to take in to school any and all paperwork from the doctor to document this. It may help having this information in hid due process folder.
I wish more than anything I had the answers for you. All I have are cyber hugs and prayers for you and Monkey (and Otto & Chickadee) as you navigate through these stormy times. You don’t see it, but you are such an amazingly strong woman. I am in awe of you. (in a good way! LOL) Hang in there and know you will do the right thing for everyone. YOU WILL.
Mir, so sorry to hear about all the problems Monkey is having. If it DOES come to surgery being necessary, you can let him know from me that while it’s not a fun process and takes a little while to get over, the results are well worth it. In my case, normal hearing in both ears. Also, I think you’re doing a fantastic job as a Mom during a very trying period, hang in there! I will be rooting for you.
Sending hugs. Praying it gets easier.
I’m so very sorry that Monkey and the rest of you are having such a hard time. I’m with you in thinking that this infection HAS to be impacting his behavior. How could having an infection in your head for months not impact your behavior? I’m a neurotypical adult and I can think back and find times where my behavior was relatively unacceptable because I was sick and felt lousy and just lashed out at whomever was bothering me or asking too much from me. I also had the 3 year old with the sinus infection that made him a nutball that I wrote about in the comments to another post of yours. I’ll be crossing my fingers that the antibiotics work for Monkey. And if they don’t, I had surgery on my ears when I was 5 and when I woke up I was very delightfully drunk for some time. Just rolled around in the hospital bed and pointed out obvious things and laughed and laughed and laughed. So if he does have to have surgery maybe it will be capped off with an hour of happy time afterward.
My heart goes out to you. I know it’s hard on everyone, especially Monkey. If you would really want to keep him home while he is out, the school district can provide Monkey with in home tutoring. They will fight you tooth and nail over it, but they can and *have* to do that if it is what Monkey truly needs. I am not there, but it sounds like it may be the better option for him right now since he is ill.
I would force that issue if he does end up having to have surgery. I assume that if he does, he’d be out of school six weeks which is a long time to miss school. The district should have a program. If he is going to be out, make sure that you press for more instruction time. The district here says one hour per week, and that is clearly not enough. I suspect that your district will have similar guidelines.
I admit that I don’t have a lot of faith in school districts in general. I had to retain a lawyer to force the district to get my son a wheelchair bus to pick him up in his wheelchair. I sincerely hope that Monkey feels better soon. I have a fair inkling as to how hard it is for both you and him right now. i wish I could offer you other suggestions to help a little.
You are a great mama and monkey is so lucky to have you. It was meant to be this way! I applaud you as a mother of a child with an IEP for knowing and understanding your legal rights and the protection the IDEA law provides! Homebound schooling is an option, if you think that is the best plan for your family and for Monkey. But not just for the convenience of the school, because it would keep him home and let them off the hook from having to provide services and deal with his “issues.” I am praying for strenghth for your entire family to weather this storm and peace for Monkey, that soon he will be comfortable in his own skin.
Love and compassion and hugs to you and Monkey.
Oh Mir, I’m so sorry. It sucks that you, as a family, have had to waste so much time waiting and seeing if various attempts at treatment (for Monkey, for Chickadee) will work. As others have said, my heart goes out to you. Wishing you a quiet, calm weekend.
I had a large 8th grade Aspie totally lose his shit on my watch during the class change after lunch last year. I had to physically restrain him. He hurt another child. It was the most awful experience I’ve ever had as a teacher. I was shaken and on the verge of tears for days. I’m tearing up now thinking about it. I hope Monkey’s school is as concerned for HIM (and not their own asses) as I was that time. We knew it was tricky suspending him, so the principal “suggested” to his mother that he needed a couple days off to recover, which everyone was comfortable with (except the people who don’t understand ASD and IEPs and all that).
Stay strong. You will all get through this.
I’ll say it again. I want to take your entire family in my arms and hold you for a long, long time.
Oh Mir. The best I can offer is a virtual hug and the confirmation that you know this is related to him being sick so it WILL get better.
Hang in there.
I am so, so sorry that this is so hard right now. I’ve had ear/head/sinus issues and it made me feel psycho…and I am neurotypical.
If it helps at all, my non-neurotypical kid also processes physical issues very differently, even at 19…but as he moved through adolescence and with therapy, he has acquired a vocabulary to use and more experience under his belt with communicating what seem to him to be bewildering sensations. A lot of the time, I can ask him “Hey, you seem really out of sorts today…are you having a bad day or are you feeling ill?” and wonder of wonders, he can think about it and tell me if it’s one or the other.
It’s been a long, long time since he reacted in that blind panic mode.
Holding you and your family in the light.
“Anyone who wants to tell me he’s “perfectly capable†of controlling himself can first sit through the crumple stage afterward, and if that doesn’t change their mind, they can, second, kindly go fuck themselves.”
That’s right. <3
Plow ahead, mama.
You are his very best advocate. Hell, if I needed an advocate, and I'm a grown woman, I'd wish that I could call you. Keep on pushing wherever it feels right to push. And forgive yourself when you can't keep pushing anymore.
Don't be hard on yourself whatever you do. You can do this beating yourself up, or you can do this loving yourself. Pick the latter mama. Because either way, you still gotta do it.
So. Much. Love.
An avid rabid fan.
My heart hurts for you and your family right now. I’m so sorry Monkey is suffering.
Oh Mir, heartbreaking stuff. Thinking of you guys. Hugs.
As someone who has suffered from chronic sinus infections my whole life, get the surgery! I finally had surgery when I was 23 and it has changed my life! I didn’t realize how bad I felt until I started feeling better, and it was amazing! My first head CT at age 23 revealed that every sinus was completely full of infection, and probably had been for months/years.
Tell Monkety surgery isn’t so awful. The doctors are really good at making sure it doesn’t hurt.
Oh Mir! (((BIG HUGS))) You know Monkey. Like no one else does. I think your hunch about his infection is right on. Wishing him good health and calm seas.
You’ve gotten lots of words of wisdom. I’m sure you’re agonizing over everything (and consulting Dr. Google) so there is nothing new for me to add.
I will just tell you that you are not alone and Monkey is so lucky to have you as his mother.
Hugs, hugs & more hugs to all of you.
Ooohhhhh, Mir. I’m so sorry for both you and Monkey. What you write here…I know just what you mean. We’ve not had a suspension (yet), but we have had those same phone calls telling us that Jack pushed another child or that he poked his para with a pencil, and I can’t even really go into it because it hurts just to say that he does these things.
But just like with Monkey, he got to that point because of what led up to it. Like last year when Jack jumped on a rocking chair and it broke. It was because the educators didn’t see him jumping on the chair and tell him that he can spin in the corner or run in the hall or go to the OT room and jump. Instead they told him to stop and he didn’t because he needed some sensory input and the chair broke. And it’s not that they weren’t doing their best and it’s not that Jack was being bad, per se, but what happened was wrong and there were consequences that had to happen because of it. (We fixed the chair.)
I know it’s not the same as what happened with Monkey, but I just want to let you know that I so understand how you must feel and I am so sorry. It sounds like Monkey’s team is great. I really hope that you are able to get a handle on the infection and I hope that Monkey doesn’t feel too bad and mostly I hope that you can feel this hug that I am sending to you, because, holy shit, I know.
You need to do what’s best for your family and for Monkey, and I hope the school understands this. It doesn’t help when all the “outsiders” stare in with judgmental glares, because they have no clue what’s really going on. Knowing about kids like Monkey has really helped make me a more patient person toward strangers, especially ones with kids. We never really know the whole story unless we know you and your exact situation.
All I can offer is prayers for healing and understanding from others. (Well, I could offer to send chocolate, but that might be weird since you don’t really know me from Eve, so it would be odd if I tried to get your address — I don’t want to add any stress to your plate worrying about freaky internet stalkers, so I’ll just send the prayers and forgo the chocolate for now.) ;)
Many, many hugs and prayers for ALL of you.
You are teh Awesome! What a good mama you are, truly.
Oh, Mir. Again, I am so sorry for you, for your son, for your family. There has to be an end. And there will be. But for now, I wish you some peace, even for a moment, this weekend.
Let’s just hope for snow so everyone gets more time to cool off- and that he can return Tuesday with the rest of the kids without any days missed. And like others have said, we wish you a calm in this storm.
Sinus surgery is exceptionally painful, and it can take up to 6 months to recover. So planning back to school in a couple of weeks is unrealistic, especially if his sphenoid is clogged. That is the sinus right behind the eyes, and if left untreated can cause meningitis and blindness, so good for you on jumping on this aggressivly. How the surgery works is that they drain as much of the clogs as they can, then they cut flaps in the bottom of each sinus so they have a larger space to drain from.
I’ve had it done twice and my kids have each had it once.
Once it starts clearing up after the surgery, his migraines will magically disappear. It is going to be a long and difficult passage, but he’ll eventually end up healthier.
I don’t have anything illuminating to say, but I wanted to add me voice to the support. You guys are in my prayers.
I kept my daughter out of school for a month, two weeks before surgery to get her well enough to have it, and two weeks after for post op care. She did her work at home, it was fine. Also, if you haven’t connected with this woman, you maybe should. http://www.lemonademakinmama.com/
Ditto Jill. I got nothing more than prayers.
A better link to someone who can really understand the position you are in….
http://www.lemonademakinmama.com/2009/02/pushing-through-just-not-today.html
OH MY GOSH!
I have a child with a very similar ear issue. My son is also on the autisim spectrum. I know EXACTLY what you are going through. Your post today brought me to tears. I so want to just hug you and Monkey and let you know that everything will be better soon. We have had the surgeries. At the time, they were halacious. But the problems have gotten better. The first surgery was the most traumatic, of course. There have been more since then and each one is easier than the last. It’s the unknown that causes the most stress.
If you want to contact me, I’d be happy to talk to you about it all.
Girl — I know what you are going through — all of it! (((hugs))) to you and Monkey (and the rest of your family!).
Kathy
Poor Monkey! Poor Mama!! First of all, I want to echo the comments about the homebound teacher option. I had mono in eighth grade and missed 3 months of school. Once a week a teacher came, brought homework, and administered tests. She would also go over anything I was having difficulty with. The amount of work stayed the same but I usually had a weeks worth of work done in just a few hours. So much easier when there aren’t any distractions and you can learn at your own pace.
Second, when my PDD-NOS diagnosed son was 7, he had a massive sinus infection that had him taking 3 different meds at the same time. We thought he was doing fine, just maybe feeling a little off. Then I got the suspension call. Evidently he was behaving so badly that they removed the rest of the kids from the class to protect them and he finally wound down after throwing a chair at the television in the class room. His doctor stated unequivocally that those kinds of infection cause autistic kids to behave in extreme ways that are totally off the usual for them. He sent a letter to the school to that effect, as well. We discovered later that the Red dye #40 in all three of his meds had a hand in the subsequent behavior. It makes him belligerent even when nothing is going on.
Even though I just know Monkey from reading this blog for years, I still feel comfortable saying he WILL get better when the infection is gone. I have seen so very many people have these kinds of reactions to illness and pain, autistic and neuroptypical. I’m praying for your family that this will be healed as quickly as possible so Monkey will know that those rages are symptoms, they are not him.
*Hugs*
They don’t put this kind of thing in the owners manual, do they?
Good thoughts your way. It sounds like you’re handling things the best way you can.
So very sorry. My heart just aches to read this. You are such a great mom with such wonderful kids. Hang in there.
My heart aches for you and Monkey – the crumple part brought me to tears – what agony to watch your child move through those feelings. Maybe this happened for a reason, sounds like Monkey could use a break from school. Hugs Mir – hang in there!
I’m so sorry. That’s so hard to deal with. Although there is no history of autism/Aspergers, I had to deal with similar things with my stepsons when we had full custody and now my older son seems to be showing signs of anxiety. Yesterday seemed to be the day for it with everyone, my older son went so far as to become disruptive then crawl under a table and start hitting himself in the face. I’m at a loss as to what is going on in his head, but we’re working on it. I just have to figure that at some point someone will come up with an answer and we will be able to fix the problem. Hopefully Monkey becomes Monkey again after his infection clears up!
Your poor things. This must be so rough on all of you.
Keep him home. Even if, worst case, you just get him working through his books alone, you’re not going to look back in 10 years and say, oh hell, Monkey, that fortnight you had off school in 2011 completely destroyed your education.
Attestedly disabled or not,, boys (girls too) can be violent and have to learn the rules. Our son, he’s got concentration issues but was never attested being somthing…(?), did a horrible thing to a classmate when he was eleven. The other boy almost became blind and our son got a reprimand from school.
My husband and me had to decide how to react adequately to show him that he had crossed a border. And so we forbid him to watch TV and play computer for two months (hell for him at that time). This meant a lot of work for us, of course, but in the end he had read a few books and had become a little more “civilized”. He was never violent again to another child.
To avoid too much stigmatisation for you son, I would try to react as “normal” parents would to behaviour of “normal” children. And maybe this would help him to cope with his guilt feeling, too. Trust your boy, because it will help him to trust himself.
As fo the ear infection (I would not call it “head infection” because this might be misunderstood as crazy),, water in the ear tubes feels like being in the gym hall or at the pool and being terrorized by the noise of a hundred kids. Our son had it three times for months, with two and a half, five and seven years, and never said that he would not feel well. This affected his behaviour for sure.
I got nothing–just holding you all in the light.
:( So sorry you are all going through this. Keeping you guys in my thoughts.
I am thinking of all of you and hoping that curing the infection makes a big difference. I know that when my ‘quirky’ son was littler, I often found that the first sign of sickness was a severe downturn in his ability to cope with the world. I’m crossing fingers that that turns out to be true for Monkey too and that things get better.
After many months of antibiotics for my then four-year-old daughter, they wanted to operate on her, too. When I balked, they gave me one week with one last antibiotic. I took her to an amazing chiropractor in Santa Monica who adjusted her — which let the fluid drain, started her on garlic oil ear drops, taught me how to tap her thymus. He also gave us natural alternatives to antibiotics and instructed us to limit sugar and dairy until she was well. That was three years ago and she hasn’t had an infection since. This type of treatment, as well as massage therapy could be a perfect combo for your son. You have the perfect forum to share this and save kids from the pain and needless drugs! I hope you will consider this option and keep us posted on your child’s progress! — Karin
Oh, I SO feel for all of you. Do consider the homebound education thing. Remember: you KNOW your son is ill. You know he’s under a tremendous amount of stress when he is at school under normal circumstances, and that the illness lowers his abilities to manage that. I have been in your shoes, with a child that was seriously depressed and wanting to kill herself. Having a physically and emotionally healthy child is more important than homework or learning multiplication or whatever. You know Monkey is a smart boy and he’ll learn the stuff eventually. Now he needs to get better AND feel better about himself.
With my daughter, we concluded that it was, in some part, the stress of daily school that was contributing to her staying ill. And once we pulled her out for a time, we saw her improve dramatically. They say there’s such a huge link between stress and physical health and how your immune system is or is not able to work.
So maybe that’s a good option to consider. It certainly seemed to make a difference for our daughter.
I know whatever you do will be carefully considered and done with love and thought. You’re a great mom and Monkey is lucky to have you on his side.
Diane
(((hug)))
Hugs & prayers to you…
Oh Mir my heart is just broken for that poor boy and for you, his mother. All I can do is pray and send over the best of wishes to you all. Take care x
I know you’ve hit a nerve when you have too many comments for me to consider reading them all in order to see if what I want to say has already been covered. So, I’m forging ahead, hoping that it’s not annoying to hear the same thing over and over.
1. Niksmom (I don’t know if you know her, but…) once told me–about some issues N was having in school academically–that you can’t expect someone to sit down and learn Spanish while their house is on fire. Relating back to Monkey, I’d say here that you can’t expect someone to control their reactions to stimuli when every nerve cell in their body is “on fire,” either. Until that’s taken care of, you really can’t work on the underlying issues. Because he’s already ABOVE baseline in overstimulation on a daily basis.
2. That said, you and I both know that getting rid of the infection and the pain will significantly reduce Monkey’s overload potential, but it won’t eliminate the behavior. So don’t be looking for a literal cure-all when the infection is dealt with. (You know that. I’m just stating the obvious.)
3. “Winning” means keeping Monkey and the people around him as safe as possible. So long as you let the school know that YOU know that what they were doing is not necessarily legally defensible, that’s all that is needed in this situation. I’ve had several situations come up recently in which the action a school took w/r/t N was actually the RIGHT action in terms of what he needed, but was handled completely wrongly. (Wow, that grammar sucked.) I’ve actually been trying to blog about it for months, but it’s hard to say THEY HAD NO RIGHT TO DO THIS, EVEN THOUGH IT TURNED OUT TO BE THE BEST THING THEY COULD HAVE DONE. I think that’s what’s going on here, too.
4. What did his parapro say about what happened? Does she think there was a way that she/the teacher/the school could or should have handled this that would have defused the situation in time, or was it a no-way, no-win situation?
5. If there’s a home-bound schooling option that works for you, that might be your best bet. But I know that, at least where I am, LITERAL homeschooling means waving goodbye to any and all services that the school district is providing you. So be careful what you sign away as you figure this all out.
Hugs, and more hugs, to all of you.
I just read this – I’m so, so sorry that it was such a trying time for you all, and I hope that very, VERY soon things even out a bit. I won’t say normalize because, let’s face it, none of our lives are “normal” LOL All my best!
May God bless your family and keep you all safe. Hugs….
So sorry, this sucks.
Wish I could bring you a bottle of wine and a pound of dark chocolate.
And that wisdom would reign over the land and the right answer would make itself obvious. Thoughts and prayers from the internets.
Sucks.
Poor guy. I am way, way out of my depth of parenting experience here. But, I’m sorry, and hope you guys are doing better.
I’m sorry, Mir. I hope you can find something that works. The homebound thing sounds promising.
Oh Mir, thank you for sharing Monkey’s life with us, for your insights and humanity.
I might have commented before that Burp is an Aspie. I watch your trials and realize what my daughter is going through, what Burp is going through, and I hope I’m able to be an effective support system. My husband, who adores our grandson, refuses to believe there is nothing a matter with Burp that disappline can’t fix. He adores and choses to remain ignorant, this doesnt help. Thank you for sharing, matter how dark. You share with us the beauty and the bruises that are Monkey – and give the rest of us hope.
My hopes and prayers for answers for Monkey and for you.
Hugs to you and to Monkey and your whole family. You are strong.
Thinking of you all.
I wish I could say more than I’m sorry you’re all going thru this. Virtual hugs to you all!
Your A-Team reference made me LOL. Then I cried. Hugs. Positive thoughts. Wish there was a “one size fits all” answer for you.
Longtime reader, don’t frequently comment, but I just wanted to say that I’m so very sorry to hear about what a difficult time you’re having. Please hang in there.
Words seem so inadequate. I’m sending prayers and hugs to all of you.
I hope the weekend was better.
My biggest regret of not going to mom 2.0 is not rooming with you. I really just want to give you a hug. I can’t imagine what this is like for you.
My friend has a son with EVERY SINGLE SYMPTOM that Monkey has but was not diagnosed with Asbergers (sp)…instead ADHD. He has been taking meds and has been a totally different child. Im sure that you have already had a gazillion suggestions, wanted or unwanted, but just thought I would share that info :)…on and this is me..delurking! lol…