Coming to terms with a diagnosis that can never be cured is a complicated process. There are multiple ways to look at the situation and it can be hard to find the one that works best. There are some people that believe in seeing their child as who they are, and not as their diagnosis. Others find solace in highlighting the differences and celebrating them. Some join as many support groups as possible and immerse themselves in their newfound community, while others are content in being private. A year into this life-changing news, I am still figuring out which ideologies make me feel the most comforted.
There’s no denying that Avery is so much more than his diagnosis. All who know Avery (and this is a fairly large village as Jeremy and I do not lack in the “awesome friends” department) were blessed to have known him for 12 months before we had to add an additional label to who he is. Avery is social, loves music, thrives off of making people laugh, adores reading books, and also happens to have Down Syndrome. I put DS at the very end of the list for good reason…because he is so much more than his medical label of health. However, it is difficult for me to totally dismiss this label. At times I feel like to do that would put expectations on him that are unfair. But then this question arises, “Isn’t it good for us to expect things out of him that any typical kid would achieve?”
This is where expectations and labels become confusing. I want to have high hopes for all of the things he will accomplish, but at the same time I do not want him to be put in environments where his delays will be glaringly obvious. I can only imagine as he gets older this dichotomy of what Avery wants or needs versus what makes my husband and I “comfortable” will not only change but grow ever so difficult to navigate. In my natural way of coping, I want to know now what lies ahead of us, and I want to pick which “way” will work best. I am not a “middle of the road” kind of person when it comes to difficult situations. I find comfort in having a strategy, or at least what I can play off as a strategy, until the next move needs to be made. Unfortunately for me, I am learning there is no single right way to do this. One can’t rely on a strategy because the circumstances are always changing as your child grows.
For example, Avery just began Head Start and was placed in a group with infants and toddlers. Typically, once the child is about four months from their 3rd birthday they begin the slow transition into their new Preschool class. I feel my own anxiety building about this transition – just like I did when his first birthday was approaching. The voice inside of my head is silently speaking to the universe; asking it to slow time down again so that my son can catch up to his age and transition smoothly into Preschool. I want the universe to slow down and allow him to start walking, learn to request things, and master the skill of self-feeding. I am already asking his team of therapists what happens if when that time arrives he isn’t ready? Will he be allowed to stay with the younger kids and also attend developmental preschool? Of course, I already know they tell me that he can change a lot in that time and that we will discuss where he needs to be when that time comes. I hate that answer. That answer doesn’t allow me to strategize or start coping with how that would feel now, so that I’m ahead of the game. Silly, I know.
Here’s where the dichotomy lies. On the one hand, I want my son to be around his peers so that he can watch and learn from them. However, if he were only around typically developing children his delays and shortcomings would stick out like a sore thumb and it is possible the other kids may not be accepting, or he could become discouraged. If we have him stay behind with younger kids who are closer to his current level, that could also hinder his development by not allowing him the opportunity to try more challenging activities or behaviors.
I ache to know exactly what will be best for Avery as he grows older. I am also trying to find the path in which I can walk to come to terms with the fact that he has a disability. I am struggling to find a happy medium. Deep down I think I know that we’ll both be learning from each other as we go, but right now being stuck in the middle of my emotions is hard for me. I feel very vulnerable knowing I can’t make any decisions until the time arrives to do so. It’s such a scary feeling knowing that planning ahead is nearly impossible! Maybe one doesn’t ever truly come to terms with a diagnosis like this? Obviously, my current fear of the unknown is getting the best of me.
This entry echoes the sentiments of my last post and I am beginning to see a pattern. I am feeling the need to rush through all of this while ironically I’m praying for the time to slow down for Avery. One thing is for sure; if I don’t begin to slow down and put one foot in front of the other, eventually I am going to trip over my own feet.