Community

Let me debunk the myth that all parents who have a child or children with disabilities are searching for other parents of children with disabilities to befriend. Don't get me wrong, I know several parents of children with autism or down syndrome, etc. and I like most of them. Here's the deal. Being a Mom is only one aspect of who I am. It is an important aspect that takes priority over many others, but it is not all of me. I am still an individual who enjoys certain topics and activities and I seek to spend my leisure time with people who enjoy the same. I do not choose my friends based upon my kids' friends (though it is nice when their parents fall into the above category). I do not even believe that my main community of support should be other parents dealing with similar issues. I struggle enough with being selfish with Madelyn's autism. Let me unpack that a bit. God has used Madelyn to teach Jim and me many important lessons about love, patience, joy, purpose and surrender. Most of these lessons are difficult and we often need refresher courses. The thing is, we are transformed through our interactions with her. I know if we were more generous in sharing Madelyn rather than buffering people's exposure to her, they too would be transformed. I believe an important part of Madelyn's journey while here on earth is to teach others how to be more like Jesus. Now that sounds warmer and fuzzier than what it actually looks and feels like. Even if I did want to surround myself solely with people who have a relative with autism, tell me, how would that help and support Madelyn in her purpose to be here? How would she be able to teach others how to treat her and allow others to teach her how to treat them. Though the incidence of autism is ever on the rise, the last I looked around, those of us without autism are still in the majority. It is a difficult thing to trust community to be loving and kind to you and to your child. I know that we have been discriminated against for having a child with autism. This discrimination did not happen out of meanness or even on purpose. It happened because often parents choose friends and/or small groups based upon who their kids want to hang out with. Madelyn has never had one child much less children intentionally seek out her friendship outside the confines of Bible class. I understand that. Their behavior makes sense to me. In fact, I am amazed by the handful of tender girls that embrace my daughter and show her great kindness at church. The problem is when parents choose their community based upon the friends of their children, we are not chosen. In fact, we usually do not make the list. I am not lonely, so do not read this as an attempt to make new friends. Read this as an attempt to challenge you and convict you to expose yourself AND your children to individuals with disabilities. Sometimes it will be awkward and maybe even embarrassing for you or your kids. I promise you it will be worth it. I promise that if you allow God to use these individuals, you and your family will be transformed. We all have a purpose that was knit into us as birth. I believe one of the important roles people with "differences" or "disabilities" play in our lives is what I call "Jesus teachers", because they teach us to be compassionate, to simplify, to be thankful, to be faithful, to be forgiving and most all, to love. These are precious lessons that come straight from the heart of God. My family is deeply blessed by Madelyn, but we are also blessed and transformed by all you "normal" people. We need you and want you in our lives. Inviting you into our lives is just as scary to us as it may be to you. It is hard to stop protecting people from important social and spiritual lessons.

I fight the urge to edit my own work. I want to remove my sarcasm. I want to remove the sentences that could be misunderstood. However, their removal would also signify an extraction of some truth.

The Gift

We began a new stage of our journey with Madelyn this week. She received the "gift" to all adolescent females. Of course, our immediate reaction was, "how can we give this gift back?" This question is true on so many levels. Level 1: Madelyn does not have good enough personal hygiene to handle this gift. Level 2: Madelyn does not understand the taboo nature of the subject and may at any moment share the information with anyone. Level 3: Madelyn can never (should never) have a baby. I was and am slower to acknowledge level 3. Madelyn is the one that brought level 3 again to my attention as she told me that since she was now a woman, she could grow up and have two kids, two boys. She chatted away and told me how she and Justin Bieber would get married and have children. What do I say at that moment?

As I think about this "gift" I realize that it feels more and more like a present someone buys for a friend who is pregnant and when they deliver the gift they learn the friend had a miscarriage. Madelyn's body will continue this cycle of inappropriate gifting for the rest of her life. And, as her mother, I will be the one ensuring the gift never arrives. I will be the one at the door that tells the friend a miscarriage has happened and that the gift will only cause more pain.

I looked at statistics regarding prevalence of sexual assault of people with developmental disabilities and found the numbers to be as high as 90% by some studies with 39-68% of females being assaulted by the age of 18. Sometimes I feel like a gatekeeper to an area much to vast to cover. I realize I can only do my best. It is all pretty overwhelming to consider...these are the days when I am thankful that my life keeps me too busy to spend much time contemplating the future. I am quite certain my worry of it would not change or stop a single thing.

For today, I will hug my daughter. I will pretend to be BatWoman for a few minutes. I will join her in many rituals that bring her calm. I will do all these things while ever watching what may come to "the door".