Like most things with the kiddo, even the simple yet miserable event of a cold is extra complicated/annoying/frustrating due autism. Don't get me wrong. I know any kid when they are sick are not fun to be around. But allow me to explain/whine.
There is no "Mommy I don't feel good" coming from this kid. Ever. This is a kid who dropped a 12 pound bowling ball on his toe, breaking it, and kept on playing. Is he gonna be able to stop and tell me he feels hot or his stomach hurts? No, he's more of a visual kind of guy. He'll tip me off by throwing up all over himself and then falling back asleep in it. (True story from the rota virus incident of '09).
There will be no taking of his temperature other than feeling the back of his neck and maybe if I'm lucky the ear thermometer. (Which I know is not accurate but you know how long it took him to tolerate that?!?!? Yeah I'll use what I got).
I always knew I was really sick when my mom rolled the old 13 inch black and white TV into my room. Mom's orders, stay in bed. She used to really get serious taking my temp and my pulse. That's when I knew I better stay still, sip my flat ginger ale and watch cartoons. I have a son who will be running a 102 fever (I think) and will be running all over my house! I will have to hide foods that I know are much to harsh for his sick tummy because he won't listen to reason that the B.R.A.T. Diet is his friend. He has been known to barf while running. Barfing freaks him out completely and only seems to rev him up even more.
Then let's add the fun of medication. He won't take meds straight at all ever. I've resolved myself to that. He knows I put his daily supplements and such in milk. We've made that compromise. But when he's sick, milk is the last thing he should be having. So while feeling miserable I get to wrestle with him, trying to get some Tylenol in. Of course wrestling/fighting/fussing usually leads to more running around up chucking. I find my washing machine just sighs a lot when it seems me coming with another load of puke clothes. I give that old girl a lot of work.
But this is the worst part of autism sick vs just sick. He's gonna regress. Something or things are going to get lost in the shuffle. A typical kid will probably have a quiet day or two before they are fully back in the swing. My kid? It could be a week. Maybe more. We'll see some skill lost. It might take complete retraining to get it back. If at all. Yes, he'll be happy to see that order routine back but he won't be fully on board with us again. If anything, he's probably going to remember how when he was sick, I wouldn't let him go swimming while he was barfing and therefor I am the meanest mom ever.
This is one of those times I really lose my mind. I'm his mom. I'm suppose to make it better and I don't even fully know what's wrong to make better. Last night it was clear to us when he willingly skipped his whole nighttime routine to go to bed by 7 something was up. I will now obsess on every sigh, sniffle and behavior for the next few days.
After he was out like a light, the husband poured me a glass of wine. Aka, "Mommy's meds". No, he did not have to fight me to drink it. :-)
boy do I understand this! My situation is the opposite, when my autistic 8 year daughter, maggie gets sick, it usually ends up with a hospital visit because she completely shuts down! She can tolerate the smallest cold and of of course her poor diet and drinking habits, due to sensory issues causes her to be sick all the time!!!! and no one understands, people really say the dumbest things,lol. and she is exactly the same way when she gets sick there is definitely a skill we have to reteach, ugh!!! she missed a day of school this week and it was awful going over her math work, it was as if she never had done math! I hope he feel better soon and you get some moments of quiet :) maryanne
ReplyDeleteHearing you loud and clear. I like how you explained the barfing in motion scenario and washing machine overload but most importantly...the regression of skills. People do not get that or the fact our kids give us a huge fight, regardless of how sick, to take meds. I hope he feels better soon. Just watch him closely and check in with the Doc. This is the worst time when we don't really know what they are feeling and they can't express it to us.
ReplyDeleteSo true! We can definitley relate ..... it sucks! Hope he is feeling better soon!
ReplyDeleteI could have written every word of this. I stress with every cough or lethargic moment. I hope he feels better quickly and his regression is small. good luck.
ReplyDeleteI can totally relate..my son will just lay on the couch like death and refuse food occasionally sitting up and getting sick..I cant hide cold meds in anything because I swear he can smell it! I have even tried chicken nuggets!
ReplyDeleteI missed the little kid years, because I'm the stepmom.However - some things evidently do not change. Ick.
ReplyDeleteI feel for ya!!!! I know exactly how this goes all to well... (my lil man is ALWAYS sick, and it NEVER keeps him down) Hang in there, hugs!!!! Well wishes for ur boy :)
ReplyDeleteI can totally relate. My boy had the flu a couple weeks ago and we lost all of his words. We've gotten maybe 10 of them back since. And that's being generous. Hope kiddo gets feeling better and the regression isn't too bad.
ReplyDeleteMy son Will never let me know when he is feeling sick. And he won't take meds if he is. I usually find out in the middle of the night when he throws up over the edge of his bed. He sleeps in a loft bed. Does any one want to know the splash radius of vomit? YUCK!
ReplyDeleteWhen my 3-year old was sick recently, the doctor suggested antibiotics (bronchitis) which I declined after asking them why they couldn't just give him a shot, because getting him to take them was NEVER GOING TO HAPPEN. Anyway, when he needs a fever reducer, we actually use suppositories. Gross, I know and he probably won't let me when he's older but for now, it's 5 seconds of minor discomfort on both our parts versus my husband physically holding him down while I try to use an infant dropper to squirt meds down his throat which mostly ends up on his shirt and on me.
ReplyDeleteArgh! Anyway, not sure if your son would be open to some butt bullets but this year, they've saved my sanity more than a couple of times.
My sympathies to you -- I hope you have someone to help spell you at least a little. I always dreaded when my kid would be coming down with something, knowing what was coming. The worst was chicken pox. I think he lived in the bathtub with the Aveeno oatmeal soak for three days straight.
ReplyDeleteMy ASD son has always hated meds, always. He stopped eating for three days when he caught me putting meds in his food, and didn't drink anything for a day and a half when he saw me putting it in his milk. But his reasoning skills are incredible. He got a severe infections last year and had to have amozicillin, which I am severely allergic to. The third time he spit it into my face, causing me to have a reaction (mild, but still frightening), we took him back to the pediatrician. Five adults held him down to give him shots of antibiotic. All five of us repeated "yes, I know you don't want a shot. But you wouldn't take mouth medicine so we have to give you shot medicine" (Not in a weird chanty way, just each of us said the same phrase when we happened to be the one who he seemed to be screaming at :P ). It was horribly traumatizing, but the next time he had to have medicine he seemed to remember it--he has only spit medication twice in the year since that incident. It was an awful experience for all of the adults--one of the nurses left the room in tears-- but I have to say as his mom it was certainly worth it.
ReplyDeleteYea I know it's hsrd. My daughter is 12. When she was 4 and it happened on her birthday I took her to the ER after not being able to keep her temp down. She would just sit there blank faced. I know something was wrong. She was to quite. I noticed her cheeks red and took her temp. 102. Gave her fever-all suppositories and try to keep her hydrated. About 30 mins later her temp was normal but less then an hour later her cheeks were red again. This time her temp was 104. I took her to the ER. Took 3 make nurses and 1 female nurse and myself to hold her down to look in her ears. She had a double ear infection. Gave her some antibiotics but she was never the same again. She still doesn't tell me when she's sick. She just sits there real quite and I know somethings up
DeleteI love vomit on the run! Especially when it comes out of the clear blue sky.....and this is our first sign of sickness!!!!
ReplyDeleteAnd oh the losses ......
Keep us updated
Yes, my little boy doesn't understand throwing up yet at age 3.5, and fights it and me when I try to keep him upright so he won't choke. People do not get that I have to watch him like a hawk, especially while sleeping if he is puking. Luckily he will let me take his temp with the across the had temporal thermometer, and will take liquid medicine. So not fun. Good luck.
ReplyDeleteMy first clue is when he sleeps in. I can remember once he was still sleeping and I was standing outside his door when the smell of vomit wafted out of his room. It took days to get the vomit (and gum because he had swallowed a piece the night before) out of his hair.
ReplyDeleteGood luck and thanks for sharing!
Just started reading your blog - loving it. For my kid, when he's sick, he's often angry, sensitive, touchy, apt to throw everything in his sight, climb on the table, ask for me to pick him up & then rip out my hair & scratch my face if I don't respond to his incredibly vague requests immediately. He's not quite 3. I'm really hoping that when he gets even bigger & can reach my face & hair w/o me having to fall for the ploy of "Mommy up!," he stops with the face scratching & hair pulling. And yeah, when he's sick, verbal ability is pretty much limited to him saying "Mommy Up!" and "Baba!" (milk sippy cup). Those 50+ words that we think he has in his repertoire just cease to exist until he's well again. Fortunately, the regression is temporary - aside from his ability to go to sleep on his own. That can take months to correct.
ReplyDeleteThanks for whining & venting - and letting me do the same.
Reading this felt like I had written it myself. My 3 year old has a double ear infection and has regressed. I had a mini breakdown last night due to his uncontrolled behavior. Autism stinks. :(
ReplyDeleteSame happened to my daughter when she was 4 and it happened on her birthday. She fought off 4 nursed and myself. She regressed and forgot all of the words she knew. She 12 now. Talks only when she wants to. Mainly barks, whines and growls. It's part of her stimming. Then I'll ask her about movies and her face would like up then she'll start talking about movies and what year they were made
DeleteReading this made me feel somewhat better! My 3 year old recently came down with double ear infection and throat infection (had no clue, no signs other then his anger) and he will not take his meds by dropper. if i try he will stop swallowing (including his own saliva) for hours. I've resorted to hiding in foods, but even this cannot be spoon fed as he wont take anything spoon fed from me, has lost all trust. I'm hoping he feels better soon, his anger and tantrums are still through the roof after day 2 on meds! :( I felt so alone until I read this blog, thanks!
ReplyDeleteGotta love it (the sharing/comiserating), mine has been throwing up ever since mom (I'm stepmom) dumped him off following a car trip...I thought it was motion sickness due to dehydration/constipation--which is a constant wirh his "deplorable diet" (pediatrician's words!), maybe I'm wrong. God bless is everyone, a d you and yours foe putting your life to text and helping us field the isolation!! :) --MaryKay
ReplyDeleteMy daughter throw up in the beginning when she was first diagnosed. I started educating myself about what I could do to help her. She also had pica and would hid and eat plastic bags. Stated looking in probiotics. Alot of autistic kids don't have enough enzymes the good bacteria on to breakdown foods.
DeleteMy son is being tested for autism. I understand the feeling! With Owen, he can be running a high fever of 103 and acting like nothing is wrong. He will run around the house like a mad man and will not ly down to rest. He only stops to rest may be a few after having a febrile seizure. It's nerve racking and makes me worry way to much. Doctors don't even have answers as to why he acts like that
ReplyDeleteI just wanna say i thought that i was the only person who thought like this when it comes to my daughter... she was recebtly diagnosed with asd early may of this year.. my daughter is 3 and when she gets sick, it is more of this overwhelming emotional rollercoaster... the constant crying, tantrums and almost throwing herself around makes me so concerned... her emotions are on 20! And sometimes as someone else said it doesn't just take a day... it can take a week tops to get her under control. And for some reason, she does have high fevers. Is there any connection to that and asd?
ReplyDeleteHigh fevers can be stress related. I'm having that issue with my 15 yr old because it's her first year in high school. She doesn't like it and the school won't make accommodations to keep her in smaller classes. The noise is to much for her. She gets sick and throws up alot. Every day after eating lunch. It might be psychosomatic. Stress can lead to stomach ulcers and as the red and white blood cells try to fix the inflammation it can trigger fevers. My 8 yr old son throws tantrums before getting on the bus in the morning. I haven't had him tested but noticed that he's sensitive also to sounds. I give him peices of hard candy to redirect him. Try peices of hard candies to redirect. Stay away from red. Some red dyes make aggression worse. Same peices of dark chocolate like Hershey Kisses. The natural caffeine calms them down. My daughter drinks coffee in the mornings since she was 9. It has the same effect as taking Vyvanse. If you're still having issues try a probiotic. It helps break down foods so her body can asorb more nutrients. Not enough enzymes in her stomach could also be causing the these issues because she's going to end up with vitamin deficiencies. Pay close attention especially to vitamin D's & B's
DeleteHappy I got to read your blog, I'm a first time mom and my son has ASD as well. It's super nice to read someone I can relate to.He is almost 6 and can't still take the meds even vitamins I have to put it either on juice or milk. Thank you for sharing your experiences it makes a mom like me not alone and to have that feeling I'm not doing anything right. Godbless.
ReplyDeleteCurrently 13 year old daughter has norovirus, started by puking over herself then over side of bed straight onto the dog ( german shepherd ) , daughter hence forth (gremlin) has severe autism , global development delay , dyspraxia .
ReplyDeleteWhat followed has been 18 hours of projectile vomiting whilst being either hyper running round like a bat out of hell or puking and runs whilst asleep.
The comment about the washing machine is so true , it's been going flat out all day .
Shes currently sleeping and I'm on my 100th expresso.
Ho hum lol .
My son 9 catches everything! And the slightest of cold is going to be a week minimum of no sleep constant crying, panicking and most of the time puking. Who Pukes from a cold? I wonder if they experience the illness worse or if its just that they can't cope. last year a cold that had my other kids down for 3-4 days had him on the couch not eating crying,panicking and vomiting for 19 days! He needs constant attention and reassurance and I'm on my own. I'm so tired, I'm just so tired emotionally drained.
ReplyDeleteI could have written every word of this! My son 10 has the exact same reaction!a cold for everyone else includes puking for him always Why!? He's come down sick this morning after 4days of desperately trying to keep him from getting it from my daughter. For her a few days of stuffed nose will be long days of panic, crying, nausea, repeat. The one last year was 19days of on the couch no eating no playing... He can't tolerate people talking in the room either. Its like the cold is taking up every bit of his ability to process. Thank you I don't know why it helps as I'm in for torturous week but after reading your post I had a sigh of relief . I wish I could help him I hate it so much.
DeleteThis is exactly what happens with my son, he stays sick for so long. I freak out every time someone is sick around him because I know how difficult it'll be for him to recover. My go to medicine, but you have to get it prescribe, is Ondansetron which is Zofran; it dissolves so they can't spit it out and it last for 8 hours. It also comes as a suppository and I highly recommend it. Hope this helps :)
DeleteHi please can you explain this coffee thing more: my 6 yr old obsesses on my cold coffee and Pepsi constantly: I thought I was doing the wrong thing with caffeine: so it’s a good thing for autism/ !?!? Please can you explain this? I’m curious: confused major on where and who: and how to over come a lot of things: I’ve learned as we go. I have no one to ask that really understands: they don’t know much about autism. I’m trying to read a book but, it’s not fast enough! I’m struggling on a lot! With both my autistic kids: I have times x 2 autistic babies, 3yr old and 6yr old. Help!
ReplyDeletethis is very very late i know, but while idk much about caffeine and autism, i do know that caffeine is really helpful for adhd. while most people think adhd is too much stimulation all the time, it’s actually the opposite! our brains are constantly understimulated, which is why we’re so hyperactive and lack an attention span. we’re trying to get that level of stimulation. however, there’s a fine line between stimulation and overstimulation, so be careful and gentle! as for trying to learn more about autism, i highly suggest learning from autistic individuals, not other autism moms, because no one actually asks us why we’re doing the things we do and it can be really dangerous to assume or learn from non-autistic sources like autism speaks, who is actively committing genocide against us. we have a very large community online, so please listen to our voices instead!
DeleteMy wife and I learned that our oldest boy (now 3) had autism about 8 months ago. We had tired ourselves out wondering why it was so difficult to interact with him and understand him. The hardest part was not understanding his emotions and meltdowns. We knew he had a speech delay but didn't think autism, as new parents to an autistic boy, we didn't know any better. We've learned so much in these past 8 months and thanks to this thread it helped me open my eyes and understand how why he suddenly regresses and goes back to the meltdowns, coincidentally every time he gets sick. I know their are other individuals who have it harder but this has been the most difficult task in my life. We lose hope every now and then and I just break down because of the fact that my child is struggling and suffering and I cant seem to make it any better at times. God bless all those parents who fight through it day by day. And god bless our little darlings who have it the worst.
ReplyDeleteMy son is sick now 6 years old with the flu, he is refusing medication. Big surprise, but I never thought about the butt medicine. On another topic I thought I would share totally off topic, I have been giving my son CBD oil for those of you located in California I suggest you look into Jaydens Juice . My sons behaviours have improved alot at home and at school. He is eating more and talking more. I don't know what i would have done without it. I just wanted to give you guys a little bit of hope there is light at the end of the tunnel.
ReplyDeleteI've 4 and kids be thought it all the eating problems and the to much eating problems. 3 out of the 4 can kind of make them selfs unstud now but not when they was little was hell 3 all under the age of 7. But I got thought it get a routine get to know your child routine when they are sick they are little changes that too soon my youngest who is 7 and severely autistic with very little speech and no understanding of when she is 6 in the last five years we have had a nightmare with her being sent home from hospital we almost lost her last year with an illness called kryptos where they sent her home from hospital twice and when we brought her back her blood sugar was that low we could have lost her she gets coughs colds belly ache diarrhoea I really do get it people with autism kids really do work hard but people on the outside don't see it you are alone
ReplyDeleteas an autistic 16 yr old, i can assure you that no matter how frustrating it is for you, it is so much worse for him. im sick currently, and while i’m lucky that im old enough to try and regulate my emotions better, it’s still feels like the worst thing ever. i know rationally i’ll forget all abt this in a few weeks, but oh my god it feels like i’m never going to feel better ever again and the experience of being sick now i’m older is just holding my breath and desperately trying to keep the all-consuming panic away because im in sensory hell and what if this scars me for life and i never fully recover. and then there’s vomit. i kid you not, i almost died because of my fear of vomit. im going to stop saying the word now bc just seeing it makes me panic. when i was 11 i was diagnosed with ARFID (i have a lot of trauma with that so i won’t go into detail just google it). that’s how much i fear it. i had to be hospitalized for a month bc of it (which is a whole other story about how autistics are treated in institutions bc i now have ✨ptsd✨ so thanks for that).
ReplyDeletei haven’t done the thing in 5 years now through sheer force of will and i refuse to do it now. my first symptom is always a sore throat, which is my second least favorite thing about being sick. it’s always there it’s all consuming it never goes away water hurts existing hurts it’s torture it’s actual torture and you can’t escape it and that’s what i have right now so i’m trying desperately to distract myself. but it’s still there all. the. time. and distracting myself is hard when i can’t sit up bc my whole body aches. now, i have chronic pain, so i’m no stranger to dealing with discomfort. except this pain is different. it’s impossible to ignore it makes my muscles too weak to function or just walk it off and it’s like the sore throat it’s just *different* and all-consuming. and then there’s the usual chronic pain on top of it. even just opening my eyes hurts. i’m writing this as the advil is kicking in tho so that’s cool.
Deleteand then what comes last is the congestion, and that stays for weeks. i don’t mind it as much as the others, although it make my breathing exercises so i don’t spiral into a pit of despair difficult. it’s the one thing i’m not experiencing right now actually, it’ll probably come tomorrow and my throat will stop hurting. tomorrow is christmas, which isn’t really great for morale either, bc im going to be sick for my favorite holiday and i want to cry. my last christmas too, bc we’re planning on having the santa talk with my little sister after and all the magic will disappear. but anyways, my big problem with congestion is that im really self conscious about it. you see, i can’t stand blowing my nose, sensory processing disorder and all that, so i pick it with a tissue, and everyone is super grossed out by that even though i really can’t figure out why i think it’s just one of those social things that just don’t make any sense to me. buggers aren’t gross, grow up. but yeah, so what i have to do in public is where a mask with a tissue inside it, and *thats* really really gross.
Deleteboohoo, i picked my nose within your general vicinity, guess i should choke on my own snot instead. i blow my nose and have it stuck to my face until i can find somewhere private to change to tissue, because letting people know that i have a nose at all is terrifying to me for some reason. and i do this. for two weeks. it sucks. but eventually i do forget all about it, recover, and feel good again (well as good as i can feel given chronic pain/illness, but at least i feel normal again). writing this distracted me while my advil was waiting to kick in, and it finally has, so i’ll leave with this.
Deletebe kind to your children. listen to us, bc even though we don’t communicate like you, we still communicate, just in a different language that you can learn if you put in the effort and actually listen. and fuck autism speaks, they’re actively committing genocide against us, there’s no one in their leadership that’s autistic, and they torture our children. nothing with us without us. you’re allowed to grieve the child you thought you were going to have, but don’t grieve us, we’re not dead yet, we’re here waiting for you. the puzzle piece thing is horribly ableist, use an infinity symbol instead. light it up red in april, not blue. heinz asperger was a nazi who invented high functioning and low functioning labels. he killed the “low functioning” kids and sent the “high functioning” kids to labor camps. stop calling us that. functioning labels are actively harmful. do some research from actually autistic people, we aren’t babies and we have a massive online community. and finally, happy holidays!
DeleteMy daughter was diagnosed at age 17, she will be 20 in 2 months. A lot of what I have read made sense, but I have not seen anything like the illnesses when she was a toddler until she seemed to out grow it T about age 6 or 7. Any sort of cold or runny nose made my heart drop because of I knew what we were in for. She would cough so hard and for so long that her muscles would literally give up . We would be in the hospital emergency room every time. The only thing that seemed to help her was hydrocodone. If we had a doctor who was kind enough to listen to me and give us some she would finally fall asleep, rest and get better. They sent us to an asthma specialist who told me it was an asthma cough and she just didn't wheeze. I knew that was wrong in my gut but they are the professionals right. And, I have heard the same things about autism speaks as the commenter above. She ( my daughter) will not even entertain the idea of any kind of advise or help if she knows it is in any way related to autism speaks. It's sad that an organization with so much potential to help has done so much harm.
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