I think D was about 2 weeks old when his first doc (my favorite of them all) told me “he’s the tortoise, not the hare.” Truer words were never spoken!
D has been pretty globally delayed on a wide range of things. At first the big deal was his suck/swallow reflex, which took weeks to return after his brain injury. He also relied on a caffeine prescription (to remind him to breathe) for about a month longer than most preemies need it, and continued having occasional brady alarms for longer than he was “supposed” to. He even decided to come down with NEC at three months old (one month adjusted) when most preemies get it before term! He’s failed swallow studies, took longer to sit up on his own, to vocalize, to be interested in toys, to stop being a big grump all day, etc. The only thing I can think of that he was faster than normal at was getting his broviac IV out – he got it out in about 4 months, when we were told to expect 8 months. He also started crawling around 11m, which is on the late side of average (I think). Although he babbles a lot, and if we’re generous we could say he has a word or two (hi, dada), and has no real signs of talking or distinct words yet at 15m.
In a lot of ways, D’s unique medical challenges make it easier for me to accept his delays. Once I really understood and accepted what had happened to him, typical developmental guidelines went out the window. He has very clear, obviously legitimate reasons for being behind! It’s still hard seeing him far behind his peers in some skills, especially now that the medical emergencies are over. I try my best not to compare D to how K was, or to my friend’s kids, but it’s a tough habit to break. Mr T and I are constantly reassuring ourselves that he really will do X some day. Probably the ones who really have to grow and change are Mr T and me – we need to stop anxiously awaiting the next milestone, and start relishing all of the fantastic things he can do! I find that when we remind each other of what we were worried about 2 months ago (cruising in only one direction, and drinking from a straw come to mind) and how now they’re no big deal, it’s easier to remember that soon (or someday) all these other things will be no big deal as well.
One of the fellows who helped with D’s surgeries told me about his son who also had a brain injury at birth. Thankfully, his son was big enough to get cooling therapy, and was now 2 years old and doing great. He said that he and his wife are constantly surprised by how great he is, and that you never know what they’ll be able to do (or what won’t be impossible for them) until they do it. In a way it would be so much easier to know what D’s specific limitations will be, or when he’ll finish his race (keeping with the tortoise metaphor) but all things said and done, it’s better to think of D having limitless possibilities and milestones ahead of him.
We went to our NICU’s holiday party this past weekend (the first NICU, at the hospital where D was born). We got to see 2 of our 3 main doctors, and they were so thrilled to see how chunky he was, most of all. I think they both had hopes that he would be off of the feeding tube by now, but were happy he was at least getting some food by mouth. They thought my descriptions of his other milestones were totally in line with his prematurity, and were happy. They all commented on how alike the boys look (see, comparisons are so hard to avoid!) and how handsome they are.
Those sorts of functions always leave me with mixed emotions. Everyone’s always thrilled to see him and says he looks great, but then wants to hear a scorecard of his milestones. That’s the harder part for me! I am always trying to spin it in a positive light like, “oh he’s such a great cruiser, I know he’ll be walking any minute!” or “he gets formula overnight but he loves eating baby food during the day!” If I don’t shed an obvious positive light on it all, I feel like they think I’m asking for sympathy or something – one of the nurses at this event started to reassure me / bring me down, a la my suggested language-to-avoid, “oh it must be so hard for you, you’ve had to deal with so much, how are you doing?” I just told her we’re so much better than where we’ve been, and we’re all doing great.
If your child has some delays, how do you deal with it emotionally? Do you expect that they’ll “catch up” soon, or are you playing the long game (like me)?
honeydew / 7916 posts
It’s tough! I find myself subconsciously pushing him to be ahead in every other way that I can, which is ridiculous. There’s also the challenge that comes with being told your child will always be delayed in certain areas, and holding your breath and trying to keep your expectations low for them.
blogger / nectarine / 2043 posts
I always get a reflex reaction to list all of Baby C’s accomplishments when people comment on how small she is for her age. It’s gotten a lot easier over the past 6 months, as she seemingly hit some sort of development stride and suddenly hit all sorts of milestones I was convinced she was going to be delayed on, but until then, yes, it was really hard not to be upset when kids half her age were inhaling dinners off their parents’ plates and she would have nothing to do with anything that wasn’t mushed, or when she would refuse to crawl and kids younger than her were doing laps around her. I looked to examples around me and tried to just remind myself that everyone, even kids who weren’t born early, develops differently. There are plenty of completely healthy kids who don’t walk until 18 months (I was one of them) or later, or don’t talk until they get older, etc. I also have a friend whose daughter was born at 26 weeks and spent 3 months in the NICU. It took her until she was 18 months (actual, 21 months adjusted) to really walk, and she’s a bit slower in acquiring language, but she got there eventually and is no better or worse of a kid than one who walks or talks early.
blogger / pineapple / 12381 posts
I deal with this a lot. So much that I’ve changed my milestones that I ask about. What makes him smile? What brings him joy? What are his favorite books right now? How are your interactions with him? I know if families can answer these questions appropriately, things are going well. All the rest is gravy!
I was talking to a mom last night who gleefully relayed her 16 year old son’s milestone of walking for the first time without his walker at age 4. We both had tears in our eyes when she was done, because no milestone was more hard-fought than the one she described to me (and the prognosis they were given was lifetime in a wheelchair). He’s blown through that prediction, but in his own time and so will your little adorable man
pomelo / 5220 posts
It is so hard not to compare and feel sad when you hear about what other kids able to do. Our LO is doing so, so great, but it always feels like salt in the wound when he isn’t able to do something other kids his “age” can do. I just still have so much guilt about him being early, even a small comment at daycare by another mom can set off my whole morning.
nectarine / 2152 posts
My kids had virtually no words at 15 months but now at almost 19, have a bunch! It just happens when it’s going to happen, ya know? D looks great to me!
honeydew / 7916 posts
@Mrs. Jacks: I was trying to tell the ped that LO started imitating signs and sounds and she just nodded, so I had to add “but he’s deaf and can’t hear us!”. Because to her these are totally normal, but to us we weren’t sure how he’d ever communicate or when.
blogger / pineapple / 12381 posts
@spaniellove: Yes, and that deserved to be celebrated!!! That’s amazing
Congratulations!
honeydew / 7295 posts
It’s hard. One thing my MIL said that helped though is that we never have any guarantees about our children’s future and we don’t want to miss enjoying them because we are worrying about something we simply can’t predict or change. I do everything I can much like you to help my son thrive and grow. Beyond that I just have to cross each bridge when I get there and believe that things will be okay no matter what. It’s harder to do some days than others but it was good advice.
blogger / pomegranate / 3044 posts
@spaniellove: I feel you, the balance between not pushing/accepting delays and feeling like you’re not doing enough to push them to move beyond thing is so hard for me! I’m so glad little man is imitating sounds & signs, that’s huge! I know clapping isn’t a typical milestone but when D started doing that (later than average, of course) I was PUMPED and his docs brushed it off as NBD
@Mrs. Carrot: you’re so right, there are so many stories of kids turning out just fine. I’m sure once he’s walking/talking there will be less obvious bystander questions, so maybe this particular anxiety will fade away,
@Mrs. Jacks: Good for you for changing up your questions! Even the docs who know him very well and are very familiar with his history sometimes still grill me in this totally unhelpful way. I read lots of stories about moms being triumphant that their toddler with CP began crawling at 2, which helps put D’s delays in perspective!
@psw27: the guilt is the worst! I hope that goes away some day for us.
@MrsMccarthy: so true. Thanks for the reminder
guest
My two boys were preemies. The first, 5 weeks early and the second, 10 weeks. We celebrated every milestone no matter when it took place, because we were so grateful for any type of success. Don’t look to what is “normal” or “typical”. Your child is unique and special, developing at his pace. Some days we cried at our new normal, but today 17 and 13 years later, we battle what every parent does — teenage attitude. It gets easier to accept the slowness as your child(ren) gets older, but take the time to grieve. And push him to succeed.