That’s a year-and-a-half.
I still feel like I’m in newborn baby mode in many ways. A recent OT evaluation said that Nathan was developmentally an eight-month-old. He certainly requires so much more energy, attention, and help than a typical 18 month old. However, he has been on a huge developmental spurt lately. He’s now sitting, crawling, reaching, grabbing, vocalizing (sort of), and even tasting a little bit of food by mouth. We have lots to celebrate.
A couple of weeks ago an even more significant thing happened. His sitter was getting him dressed. I was about to leave and he started whining, flipped onto his tummy, and started crawling toward me. It was a huge indicator of his preference for me. He cuddled me for a second and we enjoyed another brief moment of him moving toward me.
One of my biggest hopes and dreams for this child is that he would be able to communicate with us in some way. He’s certainly showing signs that he wants to. He crawls up to his bouncer and says, “ah” like he wants to get in it and play. He’s shows little hints of frustration too. When I take something away from him that he’s not supposed to have or say “no-no” he gives an angry little grunt and a jerk of his hand. In many ways we are definitely moving out of the baby phase and into toddlerhood. That both thrills me and scares me to death.
I knew that these first couple of years would be my “free pass” so to speak. A time when I could skate by on his baby-ness and no one would notice he is different. I guess it’s a form of denial because as much as I thought his syndrome wouldn’t impact his life, or our lives, in a significant way these early years, it has. Not just the therapy and doctor appointments. It has impacted us mostly emotionally. The grief has been so time-consuming, draining, and hits at unexpected times. Going forward I suspect the same grief, taking different form, will still creep in from time-to-time.
Now we are headed into a new phase of other people’s judgements because of his syndrome. It’s equally emotional for me. I want to manage and control what other people think of us. I want everyone else to love him as we do. His behaviors and appearance are just different. I can’t blame them to think of him as special needs, instead of as Nathan, but there is so much in me that desperately wants normal.
One of the many reasons I want normal is because I want to be accepted. I want that for myself and for my son. In our culture, normal often equals acceptance. Different equals fear.
I’m reading a super heady book right now by Hans Reinders called Receiving the Gift of Friendship: Profound Disability, Theological Anthropology, and Ethics. It is not typical for me to be buried in this kind of book, so don’t start thinking that I’m a big smarty pants. I’m not. However, through all these super big words, and logical biblical arguments I’m gaining a deeper understanding of what I’ve been struggling to accept about my son and my myself. The basis off which I tend to base the worth of individual is a lie.
Mainly that meaning is made rather than found.
Our society has attempted to assign worth to individuals with disabilities by giving them access to public services and places. Laws like ADA and IDEA are intended to include all people in our society. While it’s a good, and necessary, thing to provide rights for people with disabilities, it does not necessarily provide these individuals with what they deeply need–acceptance and friendship. Ask any special needs mom what is hard about having a child with disabilities and I guarantee that her child does not have a friend is near the top of her list.
So we look to the Church for acceptance. The Church is quick to say the value of a human life is based on Imago Dei, which means we are all made in the image of God. However one of the big things about being human is the ability to communicate and rationalize. What does that look like when someone can’t do that? Sadly, it often looks like passivity, judgement, and feeling sorry for someone rather than acceptance.
This author is arguing that the truth about human beings, disabled or not, is grounded in God’s unconditional acceptance. Nothing else. This completely goes again the cultural myth that our significance is made by working hard, rather than found in the arms of God. I am starting to realize how I view individuals with disabilities, and even my son, says a lot about how I understand my own life.
It is that there is absolutely nothing important about my being, if it were not for the love of God.” – Hans S. Reinders
And I know this, but believing it is another thing entirely. Living it out in light of what it means for any human life to have worth, even the severely disabled who have no self concept whatsoever. Who can’t logic and reason and create. Oh how much I have to learn as a parent and as a person about this unconditional Love. I have wasted too many days longing for normal and rejecting different.
A new phase. Out of babyhood, onto toddler years. So same as it will take some time for Nathan to catch up developmentally, I suspect it will take me a while to catch up to emotionally.
I’ll have to muddle through and learn how to joyfully embrace and accept this little life buried within a syndrome. A syndrome that both masks who he is and is the essence of who his is all together. A mystery for me to sort through. Maybe it’s not just the mystery of my son that I am uncovering, but the mystery of what’s true about me and my God as well. I’m sure this phase will also last much longer than a typical toddler. In that way it’s God’s grace I’ll have some time to work it all out and find acceptance.
Therefore, my dear friends, as you have always obeyed–not only in my presence, but now much more in my absence–continue to work out your salvation with fear and trembling.” – Philippians 2:12
My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!
Also be sure to check out my list of Favorite Books on Disability!