Arbitrary Lines

As a mom of a child with special needs, even though I’ve always had a lot of fantastic help and support, I still took the full weight of Eli’s well-being on myself. 

In some ways, probably a lot of ways, this was good, noble, appropriate and required. But even so, the full weight of this load bore heavily down on me. It comes from a deep love for my son and a humbling understanding that he needs me to help him. This is part of any mother‘s job, but this role is exaggerated for parents of kids with special needs. 

For me, this looked like driving him to numerous therapies throughout the week; this looked like homeschooling him for 8 years. Homeschooling made the full-time job of mothering also a full-time job of teaching. Our many homeschool years together were a joy and a gift, yet it was also a sacrifice and with that, I felt it compounded the full responsibility I carried for his well-being. If he was making progress I felt like I was succeeding but if his challenges were mounting I took that upon myself to reflect that I was failing. I needed to get off this emotional roller coaster, release control and invite others in. I needed to do something I’m really not good at doing: ask for help and then actually receive the help.

This year we found a special-needs school for him and in faith signed him up. We weren’t sure whether he was fully ready for ‘building school’ but we believed it was a healthy step and a good time to try. This has proven to be the best decision we could’ve made for Eli, for me, for his well-being and for our family. I have seen him grow and prosper and thrive. And I too have found a new sense of life and freedom as well as the refreshing gift of simply enjoying being his mom. 

I’ve almost felt guilty for being so relieved and have tried to search my heart to see where this freedom comes from, to test it and see if it’s good. I’m so grateful I’ve had an incredible supporting husband and family all along the way. Eli‘s grandparents are so involved, they love him and help so much. Yet even so, going into this year after eight years of exclusive homeschool I was beyond exhausted. Is the sense of freedom more coming from a place of acknowledging I’m so tired, special-needs are so complicated, requiring such persistence to see growth? Or is this freedom from a place of surrender, of laying down control and realizing I can’t do and be everything, understanding the beauty of receiving help and letting others in? Either way, I’m very grateful.

I think Eli feels this healthy freedom too in his own unique way. For so long there was so much pressure put on Eli, all of the therapies only compounded the pressure. We all worked so hard so when Eli didn’t progress or learn a new skill like we had hoped, there was this quiet buried disappointed. Perhaps we were disappointed in ourselves, perhaps we were disappointed in the therapy, always searching for the next great new therapy, always searching for the next silver bullet. 

I think at the end of the day we were really just disappointed in the fact that the accident happened it all. Over the years I’ve had to sort through and realize that in no way is it Eli‘s fault or my fault. It’s not because we haven’t tried hard enough or found the best therapy or eaten the magic diet or taken the right supplement (and believe me we’ve tried all of this and continue to do so!) His challenges are a result of a horrible car accident which is the result of the broken world we live in. I think in differentiating this truth, it has allowed me to to love Eli simply for who he is and how he is without all the pressure therapy and analysis brings, without all the expectations we can put on our special needs children to be typical. I am learning that in so many ways to have special-needs just makes him more special! 

So mostly, where I’ve come in these recent years of being Eli’s mom, is embracing in love and adoring his uniqueness, his quirks and his special-ness just as he is. I know it’s not me giving up, it’s more me embracing who he is with greater joy and freedom. This takes the pressure off and in doing this I’ve seen Eli actually come more alive and more fully thrive. I think in some subconscious way he was feeling stifled by all the pressure too.

I began to realize that if I was living under the same kind of microscope that Eli has lived under his whole life by well-meaning professionals I too would feel overwhelmed by the pressure. How well am I able to pick up Cheerios? What does my pincher grasp look like? Not to mention, how is my hand writing? Do I make good eye contact? Am I connecting sequences of events and am I able to appropriately formulate them in context? I know all of these things are important, still, I’ve wondered if somebody did the same evaluations on me how would I fare? How would you fare? 

So my point here is not to throw any therapy under the bus, because I’ve seen it help a whole lot. Rather, my point is to say that what I have learned the most after nearly 14 years of parenting a child with special needs is that the biggest thing is to simply love them as they are. I’m learning to love Eli where he is, how he is, with what he can do instead of being so concerned with what he is not yet able to do or understand or comprehend. This has ignited a beauty in life and freedom in both of us; I had no idea how much we needed this. I think taking off some of the pressure has actually helped him to be more poised for better growth, bringing more efficient cognitive functioning and freedom. (Which I think in turn is true for most kids!)

If Eli grows up being able to do long division but feels insecure then I have failed. I would much rather him grow up perhaps never having his multiplication table memorized but knowing that he is loved unconditionally and fully just the way that he is. I want him to know beyond a shadow of a doubt that he is not less than anyone else, that he is not a failure - he is a remarkable overcomer and a hero! This young man has to work harder than most of us to do simple things and he does it everyday and he doesn’t give up and I’m so proud of him! I want him to grow up knowing that his mama is proud, that his mama loves him and that he is free to love others in just the same way - just as they are - just as you are! 

Culture draws these imaginary lines and calls them typical. But really who fits that mold? Hardly anyone. Yet we’ve made it the ultimate baseline and standard, we’ve made that the goal for so many children. None of our children should be held to that arbitrary standard. Instead, no matter what makes a kid special, my hope is that we could all be free to love each child where they are and as they are. I think this will prepare them to be human beings that in turn love others and do their part to make this world a better place, setting them free to be who they were made to be and to do what they were made to do. In that, they will find fulfillment and joy. And as moms I believe this is one of the biggest gifts we can give our kids.

Here’s to a summer of lavishing love on our kids and on one another!