Before Lucas was born we did a fair share of thinking about what kind of parents we would be, and needless to say that thinking did not involve parenting a premature baby with serious health issues. But over the past few months we’ve found that many of our beliefs about parenting have held true, while certain other ones have been challenged by the unique situation that we now face. Meanwhile, we’re developing some new principles that come out of parenting a baby with special needs.
We decided to attempt to articulate some of our evolving ideas about helping Lucas grow, and about parenting in general… and after one conversation we realized this would probably take more than one post on Lucas’s blog. In thinking about this, we discussed both the ideas and the corresponding application, i.e. how it actually plays out in our day-to-day care of Lucas.*
1) Touch, physical contact and loving interaction are key to Lucas’s growth and healing. On the morning that Lucas was born after a rushed trip to the hospital Krista had the presence of mind to argue with the doctors and insist that she get to hold Lucas after he was born, if only for a few seconds. And indeed she was able to do so before he was carried off to the ICU. The desire came from our belief that touch and physical contact are among the most important things that shape early interactions with babies. Our belief that loving contact can be healing, we did kangaroo care (direct skin-to-skin holding) in the early weeks with Lucas as soon as he was stable enough to come out of the crib, and we spent a lot of time cradling and massaging him during those weeks despite the fact that he was apparently unresponsive much of the time. We have continued to share such forms of loving interaction with Lucas as he grows more aware, and believe that for a child with low muscle tone this is perhaps even more important.
2) Following Lucas’s lead in terms of how he’s feeling and what he needs is often just as important as all the knowledge we’ve gained from doctors and books. From the beginning we’ve felt strongly about not having rigid routines and structures for Lucas, not forcing him to take naps or feed at certain times in order to train him into a routine. Rather, we believe that there’s a lot that he can tell us about his needs and desires at certain moments and that if we’re observant we can pick up on these things and better create an environment where he can flourish.
Of course, prior to Lucas’s birth we thought and talked a lot about baby development and cultivating specific qualities in children. And then Lucas came along and we found ourselves in a parenting situation that is much more complex than we imagined, with certain inevitable regimens and dictates that go along with him having special needs. We’ve had to build up a whole new database of theories and instructions about how to care for Lucas given his brain injury, breathing challenges, etc., and then apply some of these ideas, through our own interpretations, while still trying to follow his lead.
There are some things that Lucas can communicate like most other babies. He cries (albeit silently, since the trach prevents him from using his vocal cords) when he’s uncomfortable in a certain position or with a dirty diaper (Lucas is a very mellow guy, though, so he doesn’t often fuss about such things.) He also has other things to tell us through expressions and body language. He can tell us when he has a big plug of mucus in his throat or when his trach is poorly positioned, for example, and he can indicate when he wants to play or suck on his pacifier. He also can tell us when he’s had enough of a game or enough of us staring admiringly into his eyes (when he’s done, he just closes his eyes, part way, and goes to sleep.) All this communication from Lucas is helpful, but we still have to guess a lot and develop some of our own conclusions about what is good for him. In some case they are things that we also enjoy sharing (such as funky children’s music), and in others they involve creativity and hard work on our part, such as using most every awake moment to stimulate his brain activity through a variety of exercises.
3) It’s important to create an environment where Lucas’s accomplishments can be celebrated, setting expectations based on his particular condition (as a child with special needs) and setting up the pieces in a way that will help him succeed. This is related to the previous point and has been reinforced in Lucas’s case by the wonderful physical and occupational therapists we’ve worked with. At this point his hypotonia or low muscle tone effects just about everything he does, making it a challenge to move his limbs, sit up in a chair or car seat, rotate his head, or grasp objects on his own, among other things. Therefore, it’s essential to acknowledge that challenge but not be resigned to his inability to do some things that other babies do with ease at his adjusted age of 2.5 months. We’ve learned instead to create activities that help him develop based on where he’s at and what he’s capable of, from laying on his side and grasping the giraffe to sitting semi-upright and manipulating the overhead mobile with a string tied to his wrist.
One time in the hospital we got carried away with Lucas breathing off the vent and missed some of the signs that he was in fact getting tired. He lasted a full 48 hours, which was quite an accomplishment, but then all of a sudden he crashed, stopping breathing and needing extra assistance once he was back on the vent. He also lost weight during that time and took a while to bounce back in terms of his growth. We learned at that point that it often isn’t going to benefit Lucas to push overly hard, whether its around breathing or moving his limbs or feeding orally or any of the other challenges he faces. Rather, if we come to understand what he can do and help him take deliberate but small steps forward that it that will lead to successes that we can all feel good about.
4) Just because parenting Lucas brings a whole host of new challenges/routines/medical contraptions into our lives doesn’t mean we have to give up our green commie values. Don’t worry, we’re not going to spend another thousand words on this post banging you over the head with our progressive ideals (but you are still going to get the occasional political rant on Lucas’s blog, like it or not.) More importantly, this point is about how we’ve sought to maintain our values around limiting unnecessary purchasing (all of Lucas’s clothes are hand-me-downs from friend’s children, bought at second hand stores, or gifted by you all :), reducing waste, and reusing as much as possible. Later on we’ll have to convince Lucas that his vegetarian diet is the way to go; for now, you’ll sometimes find Lucas’s dad in the reusable cotton diaper hamper chipping off pieces of dried poop to throw into the compost bin (just kidding!!)
In a subsequent post we’ll lay out a few more ideas around Lucas’s development and parenting in general. We’d love thoughts and suggestions based on other people’s experiences because we know we have so much to gain from other parents around us.
* Note: despite the frequent use of “we” on this blogs, Krista and Burke are not actually joined at the hip, nor do we agree on everything. In fact, some of the things we use the plural pronoun for come more from the voice of one of us than the other; however, as is the case in this post, we try as much as possible to to explain things in ways that feel good to both of us and so far it’s worked pretty well (though there are times when we’re tempted to have two separate blogs that use “I”.
Unfortunately Madden has a bit of a cough, and given that we’re doing everything we can to prevent Lucas from getting sick she has to keep her distance, at least initially, and wear a mask. It’s still exciting for her to see Lucas, though, and for the rest of the family to play with him and marvel at how much he’s grown. Lucas celebrated his grandparents arrival on Wednesday by somehow staying awake and active for a good six hours straight in the afternoon. So many people paying attention to me, he seemed to be thinking… I guess I have to perform!
