Teaching Emma to feed has been one of the biggest challenges that we faced and before I detail my approach, I want to acknowledge that every parent with a child with CP faces his or her own eating challenges. Every child has a different level of disability or functionality, so each parent will need to experiment to see what works. Saying that, I hope that my experiences help you and your child.
The building blocks
ABR was fundamental to Emma’s facial muscle development and increased mouth control. I cannot overemphasise what ABR did for Emma’s feeding ability. To put it into context, here’s what I have learned from academic literature about feeding and Cerebral Palsy, and my own experience:
The more severe the Cerebral Palsy, the worse the feeding issues and subsequent malnutrition.
The more severe the feeding issues, the more distressing mealtimes become for the family. Meals can become fraught with emotional stress.
The more severe the feeding issue, the longer it takes to feed. This exacerbates the emotional stress and exhaustion.
The more severe the degree of CP, the more isolated families become. Restaurant visits become an impossibility.
Poor feeding means a poor health status and thus a shorter lifespan.
The eating process
Feeding problems are often described in academic literature in neurological terms. Like the brain, all the structures of the mouth, the throat, the swallowing tube and stomach need to work together. While I was battling with Emma’s feeding, I would marvel at the simple miracle of being able to take a bite, chew and swallow.
My ABR team explained the eating process in a clear way. Most of the muscles around the mouth that are involved in eating – including: sealing the lips, sucking the food, moving the food from the front to the side of the mouth in order to chew, sealing the airway during swallowing reflex while opening the swallowing tube, even the upper seal of the stomach – are structures in which smooth muscle (these operate involuntarily) and connective tissue strength play a key role.
ABR targets the deep structures of the throat and chest and aims to strengthen these structures. This is exactly what we experienced as we started working on Emma. Within these deep structures, embedded in the matrix, there are sensory bodies that, when activated, tell us like an inner sensor if we feel hungry or thirsty. This mechanism is known as interoception.
If you have had neuromovement lessons with your therapist, the word “proprioception” might have come up. These are sensory bodies located in the deep muscle and connective tissue layers of your body. These bodies and are activated when they are stimulated through mechanical stimuli (like muscle contraction) and send signals to the brain that then can give you a sense of your body and where it is in space, even when your eyes are closed. People also talk about this as a body map and the lack of proprioception is widely recognised as an issue in kids with severe CP. However, there is no mention in any of the academic work on CP and feeding that mentions interoception. Emma had no idea what hunger was or thirst, so she could not communicate it to us. Without interoception, feeding is harrowing. Today, although we still struggle, feeding has improved. Emma has excellent proprioception and a good measure of interoception after four years of ABR.
While ABR gave us a lot of strength and tone in the structures involved in feeding ; specifically, lip function, chewing, diminishing tongue thrust, improving swallowing and decreasing reflux – many behaviours still have to be learned. So I spent many hours trying to teach Emma how to eat and drink. Drinking is very important. Many children are not properly hydrated, because drinking very thin liquids like broth and water are a motor challenge. The thinner liquid flows much faster and the risk of aspiration (accidentally breathing in liquids into the lungs causing infection) can be a challenge. This is why I breastfed her as long as I could; it was her main source of liquid for a long time. I also bottle-fed her with milk for as long as possible. Using a bottle meant the liquid would automatically be deposited further back in the mouth, this really helped trigger her swallow reflex.
After we’d been working with ABR for a few years, I knew instinctively that the time was right – I could start training her to drink from a cup.
At that point, she still lacked the front of mouth functionality to lock her lips on a cup and to suck food from a cup or spoon. This is a more common inability in kids with CP than not having a swallow reflex. Again, she still lacked ability to sense the food and respond metrically – this meant I had to pay a great deal of attention to food temperature, taste and consistency.
These were our challenges. Plus the not-so-insignificant issue that Emma is hugely fussy. My daughter does not let her disability stop her being a diva when she wants to be.
My advice to anyone willing to pursue a healthier diet for their CP child: it’s going to be a battle and you have to be determined.
Tips and techniques for feeding a child with CP body position was key. I made sure Emma was in a good supported position in her feeding chair. Her therapy chair was much better than using a baby feeding chair. When she was young, I kicked against rehabilitative devices because it made our fate seem so final. I put off getting chairs and special needs equipment until she was four. Looking back, I wish I got the help sooner. Seating is key to supporting the child while feeding her. Emma was seated at a table so that she could use the tabletop for support and I could place the feeding tray on it. I would make feeding fun by listening to music or playing a game. Another key factor was timing, knowing when Emma was hungry. I would make sure I start feeding her before the tantrum of hypoglycaemia hit her. In our case 12 noon was key. She needed a long lunch and it could not be later than noon.
I also learned that she ate better in calm familiar environments. When we were travelling or had visitors, she would just not eat and then end up in a tantrum. So I did what I called feeding her prophylactically – before we left home or had visitors.
When it was time to start practising drinking from a cup, I used thicker liquids – like yoghurt, thick smoothies or soups. I had to cool the liquid to just below body temperature before offering Emma any – this was the perfect temperature for her to sense and taste the food. Too warm and she couldn’t sense it quickly, too cold and it became unpalatable. As soon as she could sense it, and taste it, she knew where the liquid was in her mouth and could attempt swallowing.
At this point I was still using a bottle with milk and water to keep her hydrated.
This thicker food; yoghurts, porridge, smoothies; took Emma (and me) a little while to get used to, but the best technique was to tip her head slightly back and drop the food on her tongue with a spoon. Then I’d tip her head forward slightly. This technique helped avoid the forward thrust of the tongue and helped trigger the swallow reflex. By tipping the head forward, I was also protecting the airway plus it is very hard to safely swallow if your head is tipped backwards.
It took a while for me to get this technique right, so I bought a bulk batch of disposable baby bibs (great for travelling, too) and a tray with raised edges. The tray caught the majority of the mess, but it still looked like World War 1 after each meal. But she got better and better with feeding each week.
The biggest learning curve for me was that meal times were Emma time. When I was in a hurry, she would pull up her brakes.
In several studies I saw that when researchers talked to parents and then observed meal times they found that parents over-reported the feeding times by almost 30%. This showed me that I needed to overcome the impulse to rush Emma. The key to success was to be patient. Of course, doing ABR and speech therapy alongside my efforts meant guaranteed constant improvements.
I don’t support any kind of specific product but I thought I’d share a Pinterest board with the baby paraphernalia I used to help Emma eat and drink from a cup.
While working on the technique, I was also experimenting with recipes and supplements. I’ll share this in another post.