Entry Twenty Three- Falling Asleep

It is so easy for me to see Oscar as a baby. The label “baby” is more appropriate than “toddler” based on his abilities. I need to allow him to be as age appropriate as possible, as he is capable. This includes his bedtime routine and developing good sleep practices, which he currently doesn’t have.

Oscar had a Complex Care Clinic appointment yesterday and the topic of sleep came up. Actually, I brought it up. I know that the sleep routine we have created for Oscar isn’t ideal and that it needs to be changed. I needed encouragement and help coming up with a plan.

Oscar is almost 2 years old and doesn’t know how to put himself to sleep. Why? Because he has never had to learn. We have never given him the opportunity to learn. In our defense, Oscar’s nighttime routine isn’t typical. At 8 weeks old Oscar started taking a medication called Phenobarbital at night to control his seizures. A side effect of this medication is drowsiness and would very rapidly put him to sleep. He also struggled with reflux, so we would cuddle him in an upright position to ensure that the medication went down okay before laying him down in his crib. He no longer has reflux, yet we still do this. We have developed the habit of cuddling him for far too long (like an hour) after he has fallen asleep. Who doesn’t like snuggles? But now he is almost 2 years old.

Oscar was successfully weaned off of Phenobarbital in December 2019 and his seizures are now controlled with a medication called Topiramate. Topiramate also has drowsiness listed as a possible side effect, but to me it doesn’t seem to affect Oscar in the same way. His current bedtime routine is the following; milk, bath, brush teeth, medication at 7:30pm sharp and then we snuggle him until long after he has fallen asleep. Eventually we take him to his room. Oscar has always been put to sleep with medication and therefore has never learned how to put himself to sleep.

Because he can’t put himself to sleep, I have to frequently snuggle him in the middle of his nap because he has woken up for whatever reason and is unable soothe himself back to sleep. This also happens every night at 4am. Either my husband or I will go into his room and snuggle him back to sleep or if we are too tired we end up bringing him into bed with us. Needless to say, he needs to learn this skill.

My other “excuse” for having not sleep trained him earlier was my concern that he wasn’t going to get enough sleep and that that could cause some issues for him. Sleep deprivation was a trigger for seizures that neurology had discussed with us. In my mind, if he doesn’t have a good nap or if he is up in the middle of the night it puts him at risk for having a seizure. What I have learned about my son over the last 23months is that he is resilient. He has been challenged by some of the other seizure triggers including fever and dehydration (after severely vomiting from a now known egg allergy) and has been okay. Oscar’s resilience is starting to settle with me. Maybe that sounds weird. But with all of his health challenges in the past it is so easy to treat him with fragility. He is more resilient than I give him credit for.

Oscar still seems so little to me, but he isn’t. He is growing up. I need to allow him to do the things that he is capable of doing and help him learn how to do the things he struggles with. It is hard watching your child struggle, it is so much easier to do things for them. It is hard letting go, for any parent.

When I look ahead (which I try to avoid) but if I were going to fast forward 20 years, I know that Olivia will have gone to University (not going isn’t an option for her) and she will either still be studying or she will be working and supporting herself. Oscar’s future is a lot tougher to visualize. I can’t. I don’t know who he will be or what he will be capable of. My hopes are that he will be able to support and take care of himself. I don’t know if this is possible for him. But I need to do my best to help him get there, wherever “there” is. Any little bit of independence he can gain, the better. So for right now, what I can do is help him learn the skill of falling sleep by giving him the opportunity to do so.

So, with our pediatrician’s encouragement we are now in the process of developing a bedtime routine and sleep training. Wish us luck!