We have recently learned that Maddy has oral motor issues. Oral motor issues – what the heck is that?
Oral motor skills refer to the movement of muscles of the face (e.g. lips and jaw) and oral area (e.g. tongue and soft palate), especially the movements related to speech. I stole that definition from here. Kids with SPD can have motor skill and body awareness difficulties, including oral motor issues. It has been estimated that 31% of children with SPD have problems with feeding.
Basically, a child with oral motor issues has trouble controlling the movement of her lips, tongue, and jaw muscles. As you can imagine, this can make learning to eat and talk a much more difficult task. It is suspected that it is caused by a neurological glitch – in other words, the brain knows what it wants the mouth to do, but the right signals don’t get to the mouth (and thus, the mouth never completes what the brain wants it to do).
We have known since Maddy started eating that feeding was a struggle. Right from the get-go, feeding was not easy.
As an infant, she had a terrible time latching to breastfeed. We were constantly seeing lactation consultants with little success. Each visit, they would gasp in shock when they saw the damage breastfeeding was doing to my body, and would express that they couldn’t believe I was still trying. They repeatedly tried to help Maddy and I learn how to make nursing a more pleasant experience, but the only thing they had success at was getting me some topical antibiotics to treat my wounds.
For personal reasons (read: a family history of food allergies), I was desperate to solely breastfeed until Maddy was 6 months old, and wanted breastfeeding to be a part of Maddy’s feeding until she was at least a year old. Breastfeeding had become the worst part of my day (okay, of my every hour, or 2 hours if I was lucky). I would cry every time Maddy would latch, and Eric felt helpless watching, and not being able to help.
When Maddy was a little over 2 months old, I called my oldest sister, Lindsay, in tears. I wanted nothing more than to be able to breastfeed Maddy, but I was at my wits’ end. The last lactation consultant I had seen had warned me that I might need stitches if any more damage was done, and Maddy was making good on that promise. I tearfully expressed to Lindsay that I didn’t think I could keep going, the wound was now so large that it was painful even when Maddy wasn’t nursing.
Fortunately, my sister knew an amazing lactation consultant in Eastern Ontario who consulted with me over the phone/skype. Lyne was the key to our eventual breastfeeding success. Just to complete the story for those of you interested, I ended up only nursing on one side and pumping the other side to give my wound time to heal. I was warned against this by many other lactation consultants, but it worked. After a month, my wound was healed enough to not continue to tear (though it took another few weeks for the pain to subside during nursing), and I still had enough milk to continue nursing on both sides. Without taking that break, I’m sure that we would have eventually given up.
Toddlers who are discovered to have oral motor issues often have a history of difficulty latching while breastfeeding. You can read more about signs that your baby is having oral motor issues while breastfeeding here.
The feeding issues just continued when we introduced solids. You might recall that it took a lot of work with our occupational therapist to help reduce the gagging Maddy experienced while eating (this can also be a sign of sensorimotor issues). We have also spent a considerable amount of time trying to create a positive association with food, and decreasing Maddy’s oral defensiveness.
What are some other signs that led us to a feeding assessment to determine if Maddy was experiencing oral motor issues?
- It regularly takes Maddy hours to eat (most nights it takes about 3 hours for her to eat dinner, and she’s often still asking for food as we’re putting her to bed). This is because it takes children with oral motor issues a lot longer to eat, which means it’s harder for them to get full. Maddy is always asking for food. Poor oral motor control might be contributing to that.
- We would often see Maddy mouth stuffing. Although mouth stuffing is a normal developmental behaviour, it can also be a sign of sensorimotor issues. You can read more about it here. In our case, Maddy would regularly hold food in her mouth for a half hour without chewing or swallowing it.
- When eating, Maddy often puckers her lips, the food sits at the front of her mouth, and she attempts to suck it. She often does this rather than chewing.
- Maddy is able to chew long items (like pretzels) much better than non-long items (say corn puffs). This is because she is able to use her hand to place the pretzel in the appropriate place in her mouth for chewing. Interestingly enough, the more she chews the pretzel, the more of it ends up in the front of her mouth (no longer being able to manipulate its position in her mouth with her hand).
- As I’ve mentioned before, Maddy has a very limited food repertoire. This is common in children with oral motor issues as they refuse food items that are too difficult to chew.
We were over the moon to learn today that although the local services for speech therapy requires you to sit on a wait list for some time, a child with feeding issues is seen immediately. Hoorah! We will be getting some more assistance from an occupational therapist and a speech language pathologist to help us sort through these issues (they warned us that it will likely be very slow progress and a lot of work for us, but we’re thrilled all the same). In the process, they believe they will also be able to assist with some of the other challenges our family experiences because of SPD.
At times like these, I still question why it seems to be Maddy who has all of these challenges (can we spread the load a little bit? :P). Reading through this fact sheet made me question why it is that Maddy seems to struggle with many of the issues that only some children with SPD struggle with.
I still don’t understand why it is that Maddy has these struggles – these struggles that have created an entirely different parenting experience and family life than we ever could have expected. I’m still working on the acceptance part.
What I do understand, is that our hard work is going to pay off. I was humbled today in our intake, as the therapists repeatedly patted Eric and I on the back for our ability to read Maddy’s cues, and respond to her needs despite going against traditional parenting advice. Making Maddy a big bowl of oatmeal at 3am, and sitting with her for 45 minutes while she eats it might seem crazy to some parents. But, we know that Maddy is truly hungry, and that if she does not eat, there will be no more sleep for her (or us). Feeding Maddy at 3am is a bit crazy, I guess, but we know that by doing that, we are setting her up to have a successful and happy day. One day, all of the hard work we’re doing will mean that the 3am snack won’t have to happen – until then we’ll do our best to enjoy the rare good, and embrace the less good with as much of a smile as we can muster.