https://boards.hellobee.com/ Pregnancy, Baby and Parenting blog, by Hellobee en Tue, 26 May 2026 19:58:13 +0000 https://boards.hellobee.com/topic/los-with-extremely-rigid-insistence-on-schedule-or-sensory-issues#post-2028442 Sat, 17 Jan 2015 11:31:41 +0000 erwoo 2028442@https://boards.hellobee.com/ <p>I'm sorry you're going through this. I mean, most babies and toddlers like routine so that part seems pretty normal to freak out if their routine changes. That happened with both of my boys but their reactions were so different. My oldest would get upset but he rarely had tantrums over it. My youngest, however, has a tougher time. As an infant, when someone just looked at him he would cry bloody murder. I had to warn people not to look at him. The ones who didn't listen paid and so did I. He used to throw multiple, drop to the floor (like flinging himself backwards and then it went to dropping down and rolling over to his belly) screaming and crying for a good 20 minutes. And he did this over 10 times a day. He is 2.5 months away from being 3 now and it has gotten a lot better. It got significantly better when he turned two but he still threw them. Now, when he gets upset, he'll just jump up and fold his legs and land on his knees (ouch!) and cry. I just let him get over it b/c the more I tried to soothe him the more upset he became. I have wondered if I need to get him evaluated, but he's developing pretty normally otherwise. He hasn't gotten worse but has only gotten better so we'll see. I don't think he has a sensory issue or has ever, but he does have issues with you moving things to the wrong place. Like it "has" to be here or there. We're working on that right now. </p> https://boards.hellobee.com/topic/los-with-extremely-rigid-insistence-on-schedule-or-sensory-issues#post-2028281 Sat, 17 Jan 2015 05:59:59 +0000 spaniellove 2028281@https://boards.hellobee.com/ <p>@Chuckles: the rigidity is partly about schedule and partly about visual stimulation. In the home his environment is pretty controlled, but he finds being outside the home so overwhelming that even short errands where we don't miss a nap or feeding send him over the edge. I think what first set him off at the appointment was when a woman crouched in front of him in the testing booth and would randomly jump up and yell "Looklooklooklook! Look at the monkey!" Which kind of scared me too.<br /> The SLP was concerned about future gesturing based on his reluctance to use his hands in general. At his last eval it was a concern that he wasn't grasping, and now he can grasp but he's very slow to touch anything, doesn't like bringing his hands to midline, had a screaming incident when another child touched his hand gently, and actually started signing but stopped completely. </p> https://boards.hellobee.com/topic/los-with-extremely-rigid-insistence-on-schedule-or-sensory-issues#post-2028232 Fri, 16 Jan 2015 23:44:35 +0000 LML 2028232@https://boards.hellobee.com/ <p>I don't really have anything to add on the sensory part or the routines, but I'll say that my daughter has fine motor skill issues and didn't gesture at 7 months (although I don't think the majority of kids gesture well at 7 months) and she signs quite well now at 2.5. A lot of her signs are still approximations of the sign, rather than perfect examples of the sign, but it's still pretty clear what she's saying. At 7 months, I wouldn't yet discount his future ability to communicate by sign. </p> https://boards.hellobee.com/topic/los-with-extremely-rigid-insistence-on-schedule-or-sensory-issues#post-2028222 Fri, 16 Jan 2015 23:27:13 +0000 Chuckles 2028222@https://boards.hellobee.com/ <p>@spaniellove: So, at 7 months, the rigidity is more about napping and eating at very specific times, not necessarily about going to new places, is that right? It sounds like your son's reaction was pretty intense, but I can't imagine any kids who wouldn't freak out during a 4 hour medical appointment.<br /> What gestures are they expecting your LO to have at this age? Kids aren't expected to be waving or pointing by seven months anyways.<br /> You sound like you're doing a great job for your son. It's so hard at that age when they cognitively can't understand explanations for what is happening to them. </p> https://boards.hellobee.com/topic/los-with-extremely-rigid-insistence-on-schedule-or-sensory-issues#post-2028179 Fri, 16 Jan 2015 22:25:37 +0000 MrsMccarthy 2028179@https://boards.hellobee.com/ <p>@spaniellove: I feel like sensory issues are so complicated and unfortunately it sounds like you found someone who kind of just goes by the book instead of getting a sense for your child. I hope you find someone better down the line. </p> https://boards.hellobee.com/topic/los-with-extremely-rigid-insistence-on-schedule-or-sensory-issues#post-2028171 Fri, 16 Jan 2015 22:13:27 +0000 spaniellove 2028171@https://boards.hellobee.com/ <p>Thanks for all the kind thoughts. :happy: He's being handed over to the CI team now and they're going to try testing him next week with their audiologist. </p> <p>@Chuckles: He's 7 months old so it's a bit tricky communicating to him what we're doing and what's happening next. Our OT talks about sensory issues, but I'm a bit skeptical about her expertise because her solution for everything involves deep pressure in some way. She was originally brought in because of motor skills/muscle tone issues, actually. </p> https://boards.hellobee.com/topic/los-with-extremely-rigid-insistence-on-schedule-or-sensory-issues#post-2028107 Fri, 16 Jan 2015 21:17:43 +0000 Chuckles 2028107@https://boards.hellobee.com/ <p>How old is your LO? I'm a special ed teacher and have worked with kids on the spectrum for a long time. Even if your son isn't on the spectrum, some of the things that work for kids with autism also work for kids who have sensory needs and/or are rigid.<br /> First, does your OT specialize in sensory issues? I've worked with lots of good OTs, but some weren't the best fit for kids with sensory needs because their backgrounds were in areas more like motor planning or lif skills.<br /> I'm thinking especially of something like a visual schedule to let your son know what's coming next and what the day will be like, but I'm guessing he might be too young for it. </p> https://boards.hellobee.com/topic/los-with-extremely-rigid-insistence-on-schedule-or-sensory-issues#post-2027961 Fri, 16 Jan 2015 19:29:30 +0000 MrsMccarthy 2027961@https://boards.hellobee.com/ <p>I think it's too young to diagnos ASD anyway unless it were severe. My son is highly affectionate, social and always was and has very mild sensory issues but I still suspect he might be on the spectrum. I'm sure you'll be on top of looking at the signs when he is around 18 months or so. As for the schedule stuff that's not something we deal with personally but I have seen that even kids without sensory issues can be very sensitive to schedule changes and really flip out. Super nanny stresses a routine on all her shows for this reason. Mainly I just want To say that you are doing a great job and I know it's hard to explain to others sometimes when you don't understand it yourself but in the end you should tune out anyone who isn't able to be respectful of your child and his unique needs. He is a beautiful boy and I think a lot will be revealed about him and how to help him thrive as he continues to grow. </p> https://boards.hellobee.com/topic/los-with-extremely-rigid-insistence-on-schedule-or-sensory-issues#post-2027947 Fri, 16 Jan 2015 19:18:51 +0000 erinpye 2027947@https://boards.hellobee.com/ <p>My eldest is somewhat like this. She grew out of some of the rigid schedule stuff around a year old, but has major sensory issues and rejection to sudden changes in plans. She still screams at the doctor's office, and rejects new people and even sometimes familiar people at first. For the sensory stuff, I just try to prepare her as much as possible, like cover her ears before flushing a public restroom toilet, cut tags out of her clothes, white noise in her room at night, helping her eat food she refuses to touch with her hands, letting her wipe her hands off between every bite, etc. She's gotten better as she's gotten older- she's 2.5 now. As a baby she screamed and screamed and got overstimulated very easily. She did upset herself to vomiting a lot as a baby. She was also tongue tied and refused nursing/ had reflux from that, which convoluted the issue. Now, she's able to ask questions about what things are-- especially noises and smells. She still has meltdowns from these things, but fewer. Sometimes even holding her to help her through is too much touch for her, so I'll just sit down, get my eyes at her level, and silently let her know I'm there with her. It's really hard to sit there unable to help while your child screams, but I try to remind myself being there with her *is* helping. </p> <p>I know it's hard, and it's hard for people to understand. Just keep doing what you know works best for your child, because you know him best, and don't second guess yourself and your instincts. A 4 hour test is such a long time for a kid, especially if he's having a hard time. I can commiserate, but I don't know exactly what you're experiencing, and I'm sure it's very isolating, and just plain hard. Hang in there, mama. You're doing a great job. I hope you can have your little one evaluated again on an easier day and I hope he starts to adjust as he gets a little older. I think it was a little preemptive to say he may not be able to sign-- I hope (and think) that won't be the case, and he will shut them up with his awesome signing as he learns. Xo. </p> https://boards.hellobee.com/topic/los-with-extremely-rigid-insistence-on-schedule-or-sensory-issues#post-2027791 Fri, 16 Jan 2015 16:41:36 +0000 sarac 2027791@https://boards.hellobee.com/ <p>That sounds like some pretty high level sensory issues. You're his mother, and you know best what he needs. Just tune out everyone who wants to criticize. Can you find an OT who can help you work with him to try to increase his flexibility as much as possible? </p> https://boards.hellobee.com/topic/los-with-extremely-rigid-insistence-on-schedule-or-sensory-issues#post-2027790 Fri, 16 Jan 2015 16:41:26 +0000 daniellemybelle 2027790@https://boards.hellobee.com/ <p>@ShootingStar: I agree! Any baby would melt down I am sure.</p> <p>I won't pretend to have similar experiences because I don't want to diminish yours. My LO was very schedule oriented &amp; sensitive with high sleep needs until she was 9-10 months old. She would lose it if we pushed her wake time and the whole day and subsequent night sucked. I was very hard so I can only imagine your challenges. ❤️ </p> https://boards.hellobee.com/topic/los-with-extremely-rigid-insistence-on-schedule-or-sensory-issues#post-2027779 Fri, 16 Jan 2015 16:32:04 +0000 Madison43 2027779@https://boards.hellobee.com/ <p>A former coworkers daughter had similar sensory issues - as she got older (preschool age I think?) it mostly manifested in her refusal/inability to wear certain fabrics or things with tags, etc.... She was not autistic. This isnt super helpful, I know, but I just wanted to say you are not alone! But I can only imagine how exhausting it is. </p> https://boards.hellobee.com/topic/los-with-extremely-rigid-insistence-on-schedule-or-sensory-issues#post-2027758 Fri, 16 Jan 2015 16:10:34 +0000 ShootingStar 2027758@https://boards.hellobee.com/ <p>So DS isn't super strict about routine, but it still would've been tough at that age to do anything for 4 straight hours. Maybe if we'd done it after nap 1? But 4 hours would realllly be stretching it. </p> https://boards.hellobee.com/topic/los-with-extremely-rigid-insistence-on-schedule-or-sensory-issues#post-2027685 Fri, 16 Jan 2015 15:21:37 +0000 LovelyPlum 2027685@https://boards.hellobee.com/ <p>@spaniellove: oh, J :( This sounds completely exhausting. </p> https://boards.hellobee.com/topic/los-with-extremely-rigid-insistence-on-schedule-or-sensory-issues#post-2027662 Fri, 16 Jan 2015 15:12:23 +0000 Banana330 2027662@https://boards.hellobee.com/ <p>@spaniellove: I bet it is exhausting! It's frustrating to have to stick to routines so rigidly. </p> https://boards.hellobee.com/topic/los-with-extremely-rigid-insistence-on-schedule-or-sensory-issues#post-2027659 Fri, 16 Jan 2015 15:11:03 +0000 Torchwood 2027659@https://boards.hellobee.com/ <p>@spaniellove: It does sound exhausting. I hope you're able to get some answers and relief! Hugs! </p> https://boards.hellobee.com/topic/los-with-extremely-rigid-insistence-on-schedule-or-sensory-issues#post-2027649 Fri, 16 Jan 2015 15:06:14 +0000 spaniellove 2027649@https://boards.hellobee.com/ <p>@Banana330: @Torchwood: He's had several evals by now and it's clear that besides the issues above, he's pretty good with social interaction. I've been clear that I want them to look for any signs that he might be autistic on top of being deaf since I have Aspergers, but they think it's just SPD. Apparently with hearing loss other senses like vision can become much more heightened, and I'm guessing he's relying on other cues to regulate everything and make up for sounds we don't realize we hear. It's just...so draining. </p> https://boards.hellobee.com/topic/los-with-extremely-rigid-insistence-on-schedule-or-sensory-issues#post-2027633 Fri, 16 Jan 2015 14:56:34 +0000 Torchwood 2027633@https://boards.hellobee.com/ <p>I agree with @Banana330 that autism is the first thing that comes to mind. A lot of that is similar to my cousin's son, who is autistic. </p> https://boards.hellobee.com/topic/los-with-extremely-rigid-insistence-on-schedule-or-sensory-issues#post-2027496 Fri, 16 Jan 2015 13:46:36 +0000 Banana330 2027496@https://boards.hellobee.com/ <p>@spaniellove: I use to babysit a kid in the autistic spectrum who would flip out if we deviated from his routine. My niece has also been diagnosed in the autistic spectrum, and she has similar issues. They have sensory issues, issues with eating and sleeping as well. I'm not saying that's the issue here, but it was my first thought reading what you wrote. </p> https://boards.hellobee.com/topic/los-with-extremely-rigid-insistence-on-schedule-or-sensory-issues#post-2027466 Fri, 16 Jan 2015 13:30:54 +0000 Mae 2027466@https://boards.hellobee.com/ <p>I'm sorry :( I can't relate totally because I don't think it was a sensory issue so much as stemming from our feeding issues-- but before we made the progress we've made currently on Fiona's feeding and she was SO strict on how she needed to be fed (most specifically, only by me, only in our bedroom, and only right before a nap when she was definitely tired but not TOO tired)... our schedule sucked so bad. Her awake time was 1-1.5 hours on a good stretch (this was right up until about 6 months old!!) so that meant if I needed to do ANYTHING then I needed to rush out and back in within an hour or risk her getting too tired to eat when we got back. And if she was overtired when we got back, she wouldn't eat before her nap. Then she wouldn't sleep well because she was hungry and would wake up cranky. But she wouldn't eat when she woke up because she wasn't tired enough. And her awake time then was unpredictable bc she had had such a crappy nap and it was hard to tell the difference between her being generally cranky bc she was hungry and when she started to get cranky bc she was tired again. So I had to watch really hard to catch her once she was tired again but again not TOO tired or I'd miss another chance to feed her. So basically any doctor's appointment or any time I got stuck outside the house for like 2 or more hours it led to a spiral of stress and crankiness and trying to get us back on track for eating and sleep for the rest of the day. &lt;3 </p> https://boards.hellobee.com/topic/los-with-extremely-rigid-insistence-on-schedule-or-sensory-issues#post-2027433 Fri, 16 Jan 2015 13:12:43 +0000 wonderstruck 2027433@https://boards.hellobee.com/ <p>Not quite to this extent, but my 1.5 year old is pretty darn strict with his routine! His bedtime is 8, and when our families started pushing for us to stay later than that on the holidays he took care of it for us - brought us his shoes and then had a screaming fit at one get together, and then pulled a pillow off the couch and laid down at the next one! And I definitely know when my MIL had him nap later than I ask her to put him down, because it totally ruins the rest of the day (she rarely gets to watch him and this is one of the reasons why.)</p> <p>Thankfully he isn't like this anymore with food, but I'd say it wasn't until close to the 1 year point where he stopped wailing and screaming and getting incredibly worked up if it took me .5 seconds too long to get his food ready.</p> <p>I'm really sorry, it sounds like you're having a really tough day with the test and appointments and such. I can't think of a single 4 hour time window that would have worked well for L at that age, so tough! Now that he's older and only takes one nap it's easier, his EI specialist comes either first thing in the morning or right after nap time/lunch. </p> https://boards.hellobee.com/topic/los-with-extremely-rigid-insistence-on-schedule-or-sensory-issues#post-2027407 Fri, 16 Jan 2015 12:56:48 +0000 spaniellove 2027407@https://boards.hellobee.com/ <p>@Mrs. Tiger: People don't understand that it's the end of the world for our kid if he sees anyone make a sudden movement, or the lighting is weird, or we're 10 minutes late getting home, or if we take him out at all. It means he won't sleep for days and the reflux will flare up. You probably know how much fun it is scheduling appointments with the routine issue! </p> https://boards.hellobee.com/topic/los-with-extremely-rigid-insistence-on-schedule-or-sensory-issues#post-2027390 Fri, 16 Jan 2015 12:50:12 +0000 Mrs. Tiger 2027390@https://boards.hellobee.com/ <p>My 3yo has some tendencies like that! He strongly wants his foods to be on the same colored plate/bowls (Kix on yellow, grapes on purple, etc) and if we did something a certain way one time, he always wants it done that way. I'm sorry I don't have any advice, he only recently got this way!</p> <p>D (16m) gets very grumpy when he's over tired, but I think that's just tiredness vs responding to a disruption in routine. </p> https://boards.hellobee.com/topic/los-with-extremely-rigid-insistence-on-schedule-or-sensory-issues#post-2027385 Fri, 16 Jan 2015 12:46:55 +0000 spaniellove 2027385@https://boards.hellobee.com/ <p>Anyone? At all? </p> https://boards.hellobee.com/topic/los-with-extremely-rigid-insistence-on-schedule-or-sensory-issues#post-2025860 Thu, 15 Jan 2015 15:22:32 +0000 spaniellove 2025860@https://boards.hellobee.com/ <p>Does anyone else have a LO who has such a strong insistence on sameness and schedule that outings or having naps/feedings being a little late becomes a catastrophe? I don't just mean crying...I mean refusing all feedings for the rest of the day, or refluxing for the rest of the day and even projectile vomiting. </p> <p>I knew this was a problem for J from 1-2 months and got so so tired of being told newborns were like that and he'd grow out of it, babies are like that and he'd grow out of it, etc. Our OT hasn't helped at all. Today we took him to a 4-hour hearing test and speech evaluation for cochlear implants and they weren't able to get any data because he just got more and more out of control, which is worse than when he was younger and would at least act like he was there and then blow up when he got home. The only thing they could observe other than that was that he refuses to touch things and needs help with sensory issues. (I should add that they're concerned he won't use gesture appropriately and signing may not become a preferred way for him to communicate.)</p> <p>Does anyone have a LO who is like this about routines? Please tell me I'm not the only one? </p>