When our bubs are babies, there’s nothing more distressing than not knowing why they are crying. Being a new mom is so overwhelming for so many different reasons, but when our little ones starting picking up colds, flus, and viruses, our anxiety, sleeplessness, and feeling of helplessness kick into overdrive. Thankfully, by age one or perhaps a little older, most kiddos are able to verbally indicate what is bothering them, allowing us to treat the symptoms or book a doctor’s appointment, and generally get out ahead of it.
But that’s not something we can do as easily, because our son is nonverbal. He can only indicate that he is feeling unwell, the same way a newborn does – by crying. So for three years, we have been guessing in the dark about what might be ailing him. And I feel strongly in my mama’s heart, that Aidan has had to suffer pains for far longer than is necessary because he can’t tell us what hurts, where, or how much. This honestly just breaks me. Because as his mom, I would take away every pain, every tear, and every fear in a heartbeat if I could – but I can’t. Special needs moms like me have to live with the fact that they can’t always work out what’s going on for their kiddos and coming to terms with something like this is really hard. In fact, when Aidan is ill, I find myself in a state of emotional paralysis almost… until he is through the worst of whatever it is. I find it so hard to concentrate and focus on life and work when I know my boy is suffering and somewhere, some way, somehow, there’s a clue I can’t see or hear that would allow me to help him better.
Identifying a cause of pain is one thing. But treating it is another. Because our boy refuses to take medication. Not any kind, not any way, or any flavour. It’s impossible to communicate that a certain syrup will help him to feel better, because he doesn’t understand that. All he knows is that he’s feeling really unwell, and you’re choosing this moment to try to force something into his mouth. Something he isn’t familiar with, something he doesn’t like the smell or taste of, and something he’s going to refuse to swallow. When he was little and so were his doses of various medications, we could hide them in his milk formula bottles to some extent. That is, if they could be hidden within liquids. But of course, certain things can’t be diluted into other liquids, and need to be taken traditionally – orally. Antibiotics is one such thing! And when Aidan needs to take them, we have to hold him down, and pop a syringe full into the pouch of his cheek which sometimes makes him gag or vomit, particularly if he’s fighting it. It is by far the worse thing I’ve ever had to do in my life. It shatters me to have to force medicine into him. But from time to time, when he’s very sick, that is our reality. I know that it’s not even a fraction of what parents of medically complex kiddos go through! I have such respect for them!
Our amazing paediatrician, Professor Claudia Gray, recommended suppositories to us – particularly for pain, nausea, and constipation. Though we still need to hold him down to safely and efficiently administer these, it’s the only way we can be sure he will get the full dose needed. Aidan being Aidan, he does try to push them out out of anger and discomfort. So I hold my finger in place for as long as it takes for the suppository to begin to melt. Needless to say, this is a two-person operation with lots of reassurance and distraction needed. One person couldn’t possibly manage to do it alone. It’s times like this that I’m incredibly grateful for my husband, because Aidan kicks very hard when he becomes distressed on the changing table. And I’m not strong enough to contain him on my own.
So these days, if Aidan’s mood is low, continues to be so, he’s crying or melting down over a number of hours, he can’t be distracted by things that normally entertain him, he rejects devices of all kinds, he seeks us out to pick him up, and his appetite is affected, we know instinctively that pain is in play, and duly administer a suppository. I’m sure that each nonverbal or nonspeaking child presents their pain differently, but that’s our particular checklist. And once a few things are checked off it, we move as quickly as possible to manage his pain, because pain is like dehydration: You need to get ahead of it as far as possible, and not play catch-up.
Holding my baby when he’s unwell and struggling is honestly as much for me as it is for him. We find comfort in each other. Because Aidan’s immune system isn’t great, I’ve lain awake countless nights and early mornings cuddling him to my chest, hoping that the warmth, closeness, and beating of my heart brings him some solace. I’m a big believer in the healing power of good, deep sleep, and I gladly sacrifice mine so he can sleep better. I wonder if he’ll remember that? If he’ll know that when he falls sick, his mom is there for him, no matter the time, no matter how tired, no matter how messy. It’s a privilege to be his comfort and his security and I never ever forget it.
I’d love to know how other special needs moms administer medications and manage pain in their children. Please join our Forum and discuss this some more! We can all learn from each other.
