Wednesday, August 20, 2014

A Public Service Announcement About This Blog

I feel like I’ve written a lot of “negative” feeling posts lately, highlighting some of Nolan’s recent struggles and behaviors. (And there’s another one coming. Hint: sleep study). I don’t particularly enjoy sharing these experiences, or Nolan’s medical problems I’ve blogged about in the past. But, I write about them because they’re real. I do my best to paint an accurate picture of our life with Nolan, without infringing upon our privacy too much.

As stated in the “About this blog” page, I desire to share what Down syndrome is really like. I want people to know it’s not scary or bad; that we love our life with a child with Down syndrome. But, I would be lying, and doing Down syndrome a disservice to only share the good moments and the victories without balancing it out with the bad moments and the fails. I don’t want to paint a fake picture that Down syndrome is all smiles and hugs and that Nolan’s “happy all the time,” as many believe is the case with people with Down syndrome. It's also not doom and gloom and problem after problem, like some may fear.

I also want to clarify that some of our “struggles” (if you want to call them that) have more to do with Nolan’s age/stage of life than his diagnosis. I’m not blaming Down syndrome for his tantrums. His lack of understanding and communication frustrations, however, are definitely related to having Down syndrome. But, he’s also three years old and wants what he wants.

I try to present a balanced and accurate view of how much Down syndrome really affects our life. Some days it really doesn’t, other days it does a lot. Much of Nolan’s behavior and life events are influenced simply by his age and personality. But there are many aspects of Nolan’s life that are different or especially challenging because he has Down syndrome.

One way that I try to maintain a balance when it comes to Down syndrome and how it affects Nolan is by not comparing him to other children. It’s hard not to do sometimes. It’s tempting for me to do, as well as other well-meaning people. There actually is a place for comparisons, as it plays a big role in Nolan’s therapy/school testing. In this way, we need to know where Nolan’s at in relation to his “typical” peers so that we can help Nolan to achieve a similar level of functioning. It’s a tool. But, it’s also kind of my enemy. For the most part now, I don’t care how Nolan compares to other kids –Down syndrome or not. He’s Nolan. That’s all I need to know. I don’t care if what he’s doing is “normal” or not (as I said, for the most part). As long as he’s healthy and functioning well in his home and (soon) school/social environment, that’s what matters. He has good days and bad days like everyone else. His bad days may look a little different than most three year olds’ bad days. They may not. It’s really inconsequential. Nolan dances to the beat of his own drum.

Most of my blog posts are very experiential. My primary goal is not to give advice, deep insights, or education. I’m sharing our experiences that others may enjoy reading about, learn from, or relate to them. I fear that I sometimes don’t do a good job choosing my words. I’m no professional writer. Perhaps I explain a situation poorly and people are led to believe something untrue. Perhaps my writing tone was not what I intended. When I share our struggles with Nolan, whether they are behavioral, medical, or otherwise, I’m not trying to complain. I’m usually not looking for advice. I generally don’t need “cheering up.” I simply want to share what happened, and sometimes I’m able to process an event simply by writing about it. We have been through some difficult times (particularly medical issues) with Nolan. While these times aren’t fun, there is still value in them, something to be learned. And, I hope that when I share our trials, you can see the hope and joy we have amidst them.

I want people to understand Nolan and understand Down syndrome, but I admittedly get frustrated when people don’t seem to “get it.” I have to remind myself that unless people have walked this path themselves, they probably aren’t going to “get it.” Sometimes that’s hard for me. It’s even harder for me when someone thinks they get it, but they just don’t. I somehow feel like I’ve failed. I’m sure everyone has felt that way about something in their lives before. (Right?) And, I’m not faulting people for not understanding. I promise. Just please recognize that, as much as I share about Nolan and about our life, you may not truly understand what’s it like. When others try to normalize our experiences with Nolan, it can feel like they're being minimized. Don't misunderstand me: I’m not opposed to input from others, either in the form of encouragement or helpful suggestions. Just please remember that sometimes special needs parenting can be a little lonely, and also, sometimes I just need a little grace.

I think when you’re sharing this much about your personal life (and your child!) with people in a fairly public forum like this, it can be hard to assess how your words will be taken by your audience. It’s not something I overly stress about, but I do try to be conscious of what I’m saying and what my words mean. As I said, I strive to find a balance.

I hope this post, as with all my posts, comes across the way I intend it. I simply wish to clarify some areas that I felt may have been muddled, and if so, I willingly take the blame. I hope and pray that the words I type are always truthful and uplifting (as much as possible) because I know the impact words can have, even when you least expect it. I hope that you enjoy the stories I share about Nolan and that you have learned something real about Down syndrome along the way. I hope I have not offended or put off anyone by this post, because I greatly treasure all the support I have received through this blog and I appreciate the readership (I certainly don’t deserve such a following –although Nolan sure does!) :)

What did I tell ya? This kid is pretty special!

As always, thanks for reading!

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