As I've said many times before it's a fine line between accepting your medically intense special needs child for who they are and helping them get the most they can out of life. What makes it hardest is the doubt. Until they've done something you can't be sure they CAN. That makes it hard to know how much energy to put into building skills.
Eating is something so fundamental for human life. Those of us who are able bodied can't understand how someone could not be able to eat. For us it is easy and a pleasure. We can't even imagine life without eating. But it is not that way for a lot of kids who've had medical issues.
The procedures, testing and surgeries they've been put through in their early years often cause them to develop an oral aversion. If they are lucky enough not to have an aversion or move past it, there is them the simple fact that tube fed children don'thave to eat and they know it. This can actually be the biggest problem of all. When a child is tube fed from infancy they don't learn the skills required for eating so they physically can't to it until they build the required skills. Eating is often hard work for these kids.
Babies spend a huge amount of time sucking milk in their first year. Their cheeks and tongue get strong and coordinated during those early months and prepare them for the next steps in eating. When a child misses out on normal experiences it sets their development back and it can be difficult to catch up.
In addition children with trachscommonly have difficult swallowing . I believe there are several reasons for this.
Decrease sense of taste. You know how food lacks taste when you have a cold? That's because your sense of smell is diminished. People who breathe through a trach don't have normal airflow through the nose. Wearing a speaking valve or trach cap during eating can help when a child can tolerate one.
Feeling - The cannula (tube) in the trachea. It's got to feel weird to have a tube moving around in your airway when you swallow. Some people think it causes a delay in swallowing like when you have a sore throat and it takes effort to swallow.
Weakness. A very high percentage of kids trached since infancy are tube fed because of the above reasons. When you tube feed the muscles used for eating don't get used. And eating uses a lot more muscles than you would think, especially food that must be chewed. I think this is why when we are sick we enjoy soups and foods that are easy to eat. Food that requires a lot of chewing takes a lot more effort to eat. When you are weak, that isn't enjoyable.
There are kids with trachs who eat, but often they are the kids with no neurological issues or kids that were trached after they'd already learned to eat. I've come to realize after years of trying to get Ainsley to eat that the more issues a child has the harder it is to overcome them. Perhaps an obvious fact and yet sometimes the things that are most obvious are hardest to see.
The amount of energy I've put into trying to get Ainsley to eat orally.....well unless you've been through it you just can't imagine. Whatever you think, multiply it times 10. To an outsider it probably seems crazy. Hindsight being 20/20 maybe it is. If I knew it would be so many hours invested with so little success maybe I'd have never tried. I certainly have enough "on my plate". So much that when I look at it sometimes it makes me want to vomit because it's piled so high you can barely see the plate. And yet...Ainsley could swallow and so I believed that she could do it. I still think she can. But I've learned that there will be no shortcut on this path. It will take hundreds more hours to get there and no one can give me directions because the terrain keeps changing.
I've learned that the best way to make progress is slow and steady and to adapt along the way. It is easy to see encouraging signs and want to push harder for quicker progress. Usually that backfires. The best motivator to get a child eating, is for them to ENJOY IT. That means backing off a little, sometimes a lot. We don't have to beg and plead for our typical children to eat food they like and if we do then they instinctively know they shouldn't want to eat it. We never beg and plead for them to eat their ice cream, cookies, mac 'n cheese or other tasty foods. The more we push the more unappealing the food will be and the more stubbornly they will resist. Did you ever sit at the table all day to avoid eating some horrible food when you were a kid? I did. Most of us have and remember how awful it is. There is a story called Everything Is A Grasshopper that illustrates this perfectly.
After I read this article years ago I took a more relaxed approach with Ainsley which I found to be more successful and easier. Before this I had been frustrated to the point of tears (on both our parts) on a nearly daily basis but I didn't listen to what the the frustration was trying to tell me, which was that it wasn't working. That's not to say I don't still struggle sometimes. I want Ainsley to eat orally so sometimes I slip up and push harder than I should.
Since eating is complex there are a lot of things we have to work on to make it happen for her. Currently this is what we are doing
Increase jaw, lip and tongue strength with oral motor therapy.
Timing - Thin liquids are hard. But Ainsley takes a few swallows multiple times a day. She determines the quantity so she doesn't aspirate. My theory she won't learn if she doesn't practice.
Hunger Connection - I try to always have her taste some of the food (whether it's canned formula, blenderized formula or pureed food) with each tube feeding so she connects feelings of hunger and satiety with the act of oral feeding and tube feeding.
Peer Modeling - We provide a snack at school so she can "eat" with her peers which can be motivating.
Tolerating Mixed Textures - This is the next step required before eating table food. We send applesauce and crackers so she can eat a mixed texture at lunch before she is tube fed. When the big kids are doing homework I try to do the oral motor therapy and provide another mixed texture snack.
Table Foods - Ainsley gets table foods during dinner. She will chew and swallow a couple bites when she wants to. She really enjoys dinner a lot. I don't do therapy during dinner because we need the family time plus it allows Ainsley the freedom to explore without pressure.
Endurance and Strength - Ainsley fatigues so we are trying to increase the quantities of purees she can swallow by offering a pureed meal after dinner. I let her eat as much as she can, time permitting, doing the spooning herself (self-feeding is another skill that requires practice). When she tires I spoon feed the rest and then tube feed what she doesn't eat orally. I don't have the energy or time to do this every day.
Talking About Food- We are using Ainsley's communication device to talk about the food and assist with our feeding sessions and therapy. Hopefully this will lead her to be able to communicate more with us about her eating so she can tell us more about her likes and dislikes and what problems she is having, which will hopefully contribute to success. Plus it helps develop AAC skills.
I have a video to share of a post dinner feeding session so you can an after dinner "feeding session". I'll post more about her Nova Chat 7 AAC in the near future. I'll also try to get more video of her "eating".
If you'd have asked me 5 years ago, I'd have never believed it would take us this long to get this far. The one missing component is hunger. I believe at some point we will have to reduce her tube feedings to increase her oral intake but that is complex. Because of the nurses who care for her we will need orders from a doctor which probably means passing a VSS. At this point I'm not sure Ainsley has the stamina to eat all her calories even if she can pass a VSS (she never has) and I'm reluctant to set us up for failure.
We are inching our way toward the milestone of fully oral feeding. I have hope Ainsley will get there in her own time.