Posted in musings

because it is good to belong somewhere

One of my favorite things about our church is the group of people I’ve gotten to know through the special needs branch of the kids ministry (called Equipped, for future more succinct reference). I’m not one who ever really feels that I belong in any particular group, but it comes close here – at the least, I feel like here are people who desire to understand and support our whole family, and who have a solid foundation and similar experiences on which to build that understanding and support.

To provide a concrete example of what I mean, I skipped our small group’s Christmas get-together (familiar people, familiar place, convenient time of day) because I was worried about the social expectations involved; but I jumped at the chance to go to the Equipped Christmas party (only some familiar people, unfamiliar place, inconvenient time of day) because I knew that whatever behavioral issues came up we would be unconditionally loved and accepted, and because I knew there would be other people there like us potentially dealing with the exact same behaviors and struggles. To be not alone, and for one’s difficulties to be understood and normalized, is an incredible gift.

I think it is for this reason that minorities and people with other differences often find themselves isolated from what could be called the mainstream culture (it may only be mainstream relative to a certain location or culture subset, of course). It is just so much more comfortable for any human being to be around people who are similar to them, with whom they can connect across some significant differentiating and identifying characteristic – and for people who are typically outnumbered or alone in those key characteristics in everyday life, a chance to not be the odd one out is like a breath of fresh air.

It is of course good and important to know how to live in mainstream culture, and it is at least as good and important to understand minority cultures of which one is not a part (I am always thankful for every person who tries to understand autism instead of judging or ignoring it, who isn’t offended by my refusal to participate in Sunday morning “greet your neighbor” moments for instance!), but it is also good to find a place where you can be yourself – and as a parent, to connect with a community where your child can be themselves around other children like them, so they too can have a place and time to no longer feel different and alone. And that is the gift that my church is striving to give to her children with differences and disabilities, all these neurotypical parents seeking to understand and support their children instead of forcing them to hide their true selves and appear “normal”, and it is (even incomplete and imperfect) a beautiful thing.

Posted in family life

dance to the music no one else can hear

So now, having just explained in great detail why I think special ed preschool could be a great help for Rondel despite my misgivings about the public school system in general, I am going to argue the other side against myself. Hopefully writing this out will help me make a decision! And if not, hopefully it is helpful or interesting to someone else in a similar spot.

First, you should know this about Rondel.

When my son is in a highly stimulating, fun, chaotic environment, his energy ratchets up so high that he can’t always control it. Simultaneously, especially if he is hungry or tired (or if another kid is pushing his buttons), his anxiety often escalates as well. Either of these things could be a struggle independently, but when combined they can make situations very difficult for him. His body feels out of control, his emotions feel out of control, and his external environment feels out his control. In response to that, he will often take actions that on the surface appear irrational or bizarre: he may get overly aggressive in his play, wrestling after his friends have asked him to stop; he may try to run away to escape the chaos; or he may break down into incoherent tears.

Birthday parties, amusement parks, playgrounds, noisy restaurants, music class, movie theaters, and other noisy places can all cause sensory overload and meltdowns. Vigorous physical play may be avoided because of concerns about falling, sensory overload, and the potential for explosive outbursts and aggressive behaviors due to fight-or-flight reactions. Perhaps most unfortunately, the kinds of things done by the teachers who work hardest to make their classrooms fun for most kids – busy, colorful places with lots of “activity stations,” fun music, dancing, games – may be precisely the things that aggravate kids with SPD. As a result, these teachers may find that the harder they work to make class enjoyable and to involve these kids, the more they shut down or overload. It’s hard to imagine a more potent recipe for frustration and misunderstanding on both sides.

Brock Eide, The Mislabeled Child


Second, you should know this about me.

One of the greatest struggles in my life – a struggle that I have heard countless times in the lives of my friends and family as well – is feeling that I don’t belong: that there is no group of people among whom I can be completely myself and at the same time completely loved. It is out of this struggle that my parenting philosophy was born. My goal as a mother is to give my children a relationship (and ideally a whole family community) in which they will be listened to, understood, and unconditionally loved. Whatever societal forces are pressuring them to fit into a certain mold or to act a certain way, I want our home to be the safe place in which those forces have no power.

Now, I also have hopes and expectations for my children. I want them to be thinkers and readers; I want them to be wise and compassionate; I want them to love deeply and speak kindly. But even the wisest person has moments of foolishness; even the kindest person has words they regret. In those moments, I want my children to know that my love will not cease or waver, that I will always love them for who they are even as I help them grow and mature. And I want them to know that the rate of their growth is never a cause for shame, regardless of how slowly they may be progressing. The direction and the effort are the things that matter.


With both of those things in mind, putting Rondel in a special preschool designed solely to help him acquire certain skills by a certain deadline seems antithetical to my whole concept of parenthood. He is not a flowering bush that I can freely manipulate by well-timed applications of different fertilizers or hormones; he is his own person, uniquely designed and gifted, with his own path and timeline to follow. It is helpful for me to know the ways in which he is different than “normal,” so that I can anticipate his struggles instead of setting him up for failure, learn how to help him through difficult situations instead of flailing about in the dark, and access the accommodations he needs to thrive – but it isn’t helpful to focus on those differences as things that are “wrong” with him and try to fix them or train them out of him.

And my fear is that he will think just that: that we believe his way of being is inadequate or wrong, that we don’t accept him as who he is, and that we are willing to put him in an environment that stresses his sensory and emotional systems to the point of overload in an attempt to change him into someone else. It’s hard to think of a better way to demolish a child’s confidence in himself or to damage his trust in his parents’s love and understanding. When the music plays that only Rondel can hear, I want him to dance to that beat with freedom and fullness, holding nothing back in his pursuit of the calling for which God has designed him, no matter how strange or awkward that dance may appear to those who are deaf to the song. Speech therapy we can get at a private clinic, without needing to compromise our ideals in the process; the other skills he needs for life will grow in time, as he learns their value, in the context of love and peace and belonging.