Because all that does, comparing Ruby to other kids with Down syndrome, is put Ruby (and me) in a hamster wheel of comparison. Oh, they already speak 4-word sentences? Which therapist do they see? I'll go there. Oh, they already run, jump AND swim? Which activities do they do? I'll sign Ruby up for that. And so on and so on.
I need to constantly remind myself to stop, especially in Ruby's community, because our kids are all on such different trajectories. They may all end up in a similar place, but their paths all differ so much! When I forget to hold Ruby up to anyone else's milestones or mastered skills, to other typical kids' achievements, even to the functioning levels of other kids with Down syndrome, that's when I see all of the amazingness that is Ruby. I see her rocking and rolling through speech and gross motor skills. I see her interacting in a meaningful way with peers and adults. But for some reason I have to ruin that by standing her up next to someone else she'll never be and expecting her to perform similarly.
One area I excel at messing this up is inclusion. I want it for Ruby so badly, but sometimes that desire gets in the way of Ruby being where she is supposed to be. Sometimes my desire for inclusion overrides her preparation for inclusion. Oh, the balancing act...
Because sometimes the programs designed for people with Down syndrome or special needs are not necessary for Ruby. And I love when we find a place where she can operate with typical peers in a typical setting with ease. But sometimes those programs and services are very needed. I used to fight to make our life not contain too many of those. But now I'm wondering why...if she can participate and enjoy and thrive, who cares?
Here's the thing I'm learning, albeit slowly: hitting milestones and achieving the next goal is not the only indicator of hard work and early intervention. So much of what is poured into our kids, so much of the time they spend on new concepts and skills, so much of their potential is not visible to anyone outside of the immediate family.
Early intervention is important, vital even. But just because early intervention takes place doesn't mean a guaranteed success or timeline. It doesn't guarantee anything except countless hours of therapies drilling exercises - fine motor, gross motor, oral, etc. So when you see a child that appears to be what you consider 'high functioning', you better believe there has been a boatload of work involved. However, those who might not achieve that label upon first interaction are filling their time with at least as much work. Maybe more because the parents are likely on that hamster wheel I mentioned. They are probably pulling their hair out trying to figure out how they can fit in even more work because they feel they must be failing their child in the area that lacks thriving.
This can be a lonely place. This world of guilt. Guilt over feeling like you are not doing enough as a parent. Not the same guilt you might feel with typical kids when they aren't getting better grades, or they're not finding success as a baseball player (not saying that guilt is not real). This is the guilt you feel because what you perceive to be your shortcomings affects your child's ability to function outside of your home.
A bit heavy, yes?
This is the guilt you feel for not making enough money to buy more equipment or hire more therapists or attend a school that is a better fit. This is the guilt that you feel just for thinking it could - should - be easier than this. For your child and you.
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