gross motor delays and oral sensory seeking

jerseygirl81

Hi everyone, hopefully I'm in the right place. I apologize in advance for any misuse in terminology!

My daughter, Emeline, is 13 months old and has been working with a PT for the last few months because her gross motor skills are delayed. The short version is that she hasn't lost all of her infant reflexes yet and struggles with balance and her sense of position in the world. Her core and quad muscles are tight, so most of our time is spent on exercising those areas and helping her get used to the idea of being upright. At our most recent appointment, yesterday, the PT also mentioned that she suspects an oral sensory issue, mostly because she loves really spicy foods, is funny about foods with certain textures, is really attached to her pacifier, and has sensory issues with her feet. We've been working on that - she'll now wear shoes and allow us to touch and squeeze her feet, where she used to recoil and screech if you touched them at all. She also prefers tight holding, enjoys wearing a backpack as she crawls around, and really seems to like the weighted blanket.

I guess I don't really have a question, per se - rather just wanted to be among people who get the uncertainty. I had a lot of pushback from well-meaning family members when we were initially referred for evaluation - many comments on how she'll do things on her own schedule, we were worrying for nothing, she's still within "normal," etc., but we did qualify for EI services, without any doubt. I don't really know where we're going or what we're doing, we don't have a plan other that "get an electric toothbrush to use before meals," but I guess I'm getting nervous about how to manage these issues. I made the mistake of googling and found a bunch of articles linking oral sensory issues to eating disorders later in life, and that scares me because I suffered from years of disordered eating and was really that my daughter would be spared.

So no real point, thanks for reading, and I welcome any experience that you guys might have to offer.

hopecounts

Hugs and welcome.

The good news is you are very on top of this and that is great!

My personal motto is 1 step at a time. You are aware that she may be at increased risk for Disordered Eating later on, as she gets older just have that in mind and keep an eye out because right now just focus on getting her the therapy/ies she needs and setting up healthy eating habits and modeling from the start. If she starts to have ED issues you can cross that bridge then, no need to borrow trouble yet. 

I imagine she will be getting Occupational Therapy to address the oral and food issues which is good. You'll start reading and learning as you go and you'll figure it out you are at the start of this journey and that is so overwhelming, it does become the 'new normal' and you figure things out over time. 

It's will be OK. 

jerseygirl81

Thank you, @-auntie-, you've given me a lot to think about! She wasn't a preemie, but she did have shoulder dystocia. They don't think the two are related. I haven't been given much in the way of an explanation as to why she's having problems other than "sometimes it happens." The upright issues could be from the balance but could also be related to her foot sensitivity.

She has not been seen by an OT, just a team of PTs, so thank you so much for mentioning the distinction! Do you think it would be worth asking about an OT consultation? We've been using the weighted blanket to help with her muscle exercises, to keep her lower body flat while working her upper. The backpack wasn't a specific piece of therapy, just something she happened to be given for her birthday that she really took a liking to. The therapist thought it made sense in light of her other observations.

Thank you so much for your reply!

mommy0411

Hi friend!!!! Welcome though I certainly didn't want to see you here! I agree with both Auntie and Usm123 an OT can be very helpful with sensory issues. DS 1 also has significant issues with oral motor delays as well as sensory issues with food. If you remember he was in the oral motor therapy in the spring with a team of speech language pathologists. There should be SLP;s in your area who specialize in feeding and not all of them do! 

We are here to answer any of you questions!!