In discussing Caleb and Danae’s upcoming speech evaluation with another triplet mom, I asked whether my perspective on developmental delays and disabilities is different because of my experience as a mom of preemies and multiples.
Long-term developmental and intellectual “issues” often go hand-in-hand with these kiddos. Chris and I knew this from almost Day 1, and the further we immersed ourselves in the preemie and multiples communities, the more aware and educated we became on the subject. We encouraged fellow parents as they coped with a diagnosis, helped them troubleshoot strategies, and rejoiced with them over progress. And they did the same with us.
I don’t know that my perspective would have been the same if I hadn’t been in this world. I don’t know that I wouldn’t have seen James’s struggle to do practically everything but puke that first year or Caleb’s battle with sensory issues or Danae’s inability to speak without stuttering as commentary on their aptitude or my parenting. I don’t know that I wouldn’t have seen them as “failures.” Being a parent to preemies and multiples is HARD, but the lessons it has taught me are invaluable.
The wisdom I’ve gained from this aspect of being a triplet mom is captured in the image above. Grammar aside, commas are pauses. And so too are developmental delays. A delay doesn’t indicate that your kid failed something or that you failed as a parent. It indicates that your kid needs a little extra help. To quote myself, “Kids are kids and sometimes need a little extra help when it comes to growing different parts of their person.”
How does this apply to a kid with a developmental disability? I’d say that the disability is more like a semicolon. Semicolons separate two related but independent ideas. I don’t have personal experience with developmental disabilities, but the most common sentiment I’ve heard friends who do voice is that they want to make sure that their kid isn’t defined by the disability, that people understand that the disability is merely a part of their kid’s whole person. It’s an independent but related part that creates a whole.
If you’re a parent going through this tough season, know that it’s ok to be frustrated, it’s ok to mourn. Work through those feelings, but don’t dwell in them. Move from asking “What if? and “Why me?” — completely normal, human responses — to “What next?” and “How can I?” YOU are your kid’s biggest advocate. Let that empower you into action and encourage you on the tough days.
