Boo's School

Pikachu looks on as Boo approaches the lane.

It's a long story. Long, difficult, and painful. And it's not mine to tell. If ever Boo decides to tell it, then I will support him. Until then, I will protect his privacy. So let's just say.....It's been a long hard road the last few weeks. It's been messy, scary, sad, confusing, and exhausting. And unfortunately, the struggle was not confined to home. It seeped into school. There were witnesses. 

These are the moments that tear at a mother's heart. I know how cruel kids can be. I remember school. I watch the news. But Boo's friends...the culture at Boo's school...it's different. Boo attends a small private christian school. Despite everything, there has never been a cruel word, a laugh, a joke, a sideways glance, that made him feel less than accepted and loved. Quite the opposite. Day after day I have entered the school with Boo and heard a chorus of happy voices welcoming him. I've walked down the hall past a doorway and heard excited murmurs after students saw me pass by, wondering whether he was back. I've watched at recess, as a friend made a point to sit next to Boo and chat with him when he didn't participate in the game others were playing. 

Most every day, Boo carries with him one of his plush stuffed toys. Characters from the Mario Brothers franchise or Pokemon, usually. The other students not only tolerate this unusual coping strategy, but they welcome it. They interact with the character, and with Boo "through" the character. The teachers allow Luigi or Bowser or Bunnelby to sit atop Boo's desk during class and to be carried through the halls. It's seamless, ordinary, normal.  Boo has a niche here. He belongs. He isn't like the rest. He doesn't talk sports. He isn't up on the latest dance craze or pop music favorite. But he is loved. He is included. He is missed when he isn't there. 

Today I attended a field trip with Boo and his entire school. We went bowling and then out for pizza. I watched his friends chat with him. I watched as he carefully placed his Pikachu just so, perched so that it could "watch" him bowl. I watched him dance free and silly and carefree to the music playing (much too loudly) in the alley. I watched him make Pikachu dance. I soaked it all in with a grateful heart. No one, from kindergartner to eighth grader, seemed to see anything about Boo that was less than they are. Different...but not less. These kids are defying the stereotypes. They are learning so much more than math, science, reading, and history. They are learning to live out the faith they profess. The love of Christ is truly in all that they do, and all that they are. And for that, I grow more thankful every passing day.

Someone Who "Gets It"

I got a phone call today from someone very dear to me. I have known this woman since we were children. We get to see each other once, maybe twice a year. She has a special needs child too. Her child's condition and needs are different from my son's, but as most of you know, there are certain aspects that are common to all parents of special needs kids.

There wasn't any one particular point to her call. She began by asking me about Boo's recent difficulties with "the itches." She said that she had described the situation to her child's therapist and asked for any insight they may have. And though the therapist hadn't offered anything concrete, just the fact that she had thought to ask for our sake moved me deeply. We talked at length about the various things we face and deal with because of the needs our children have. We talked about doctors, coworkers, friends, and family members. We talked about how we can be so grossly misunderstood as mothers, and how our children's needs can be misunderstood also. When we decline invitations to restaraunts, bowling alleys, crowded places and outdoor events because of our children, we are not being selfish, overly protective, or attention seeking. We know our children, and we know their limits. We know what sort of things can trigger problems for them, and we will remove them from those things before the problem makes itself evident to others. Just because you can't tell what the reason for our actions is, doesn't mean we don't have one.

We also talked about some of the comments and questions we receive from others who, for all that they are well meaning, are nonetheless ignorant. People who think they know more about our child's needs than we do, or who compare aspects of our children to themselves or to their own typically developing children. She told me of some of these comments she has recently dealt with. I told her that what sucks for me is that people have such good intentions. It sucks because when they make comments that are rude, ignorant, insensitive, or just plain wrong, I feel like getting all up in thier face and giving them a piece of my mind followed by a good sqeeze around the neck...but I can't...because they mean well.

But what really hit home for me during this phone call was that she said the reason for her call was not to discuss any particular person, issue or incident, but rather she just wanted to talk with "someone who gets it." Boy oh boy do I ever identify with that feeling! There are a great many people in my life and Boo's who love us, who know him and handle him well, who have educated themselves and who have walked this journey by my side from day one. And I am forever thankful to God that these people are in my life and his. But they don't get it. Not really. They try. They want to. They come really, really close. But the fact of the matter is, they can't get it. He's not their child. They can't get it any more than a person who has been blind from birth can really understand color, or someone who has been deaf from birth can comprehend music. It's something that you have to live, to experience, in order to really, truly, GET IT.

This does not mean that there isn't value in awareness. We still need to work to help the general public understand. With education comes acceptace, kindness, and empathy. With awareness comes a world in which our children have the space to just be who they are. But people who don't live it will never truly get it. And that is why we need each other. That is why community is so important. If you are new to this journey, I urge you to build a support system within the community. Join a support group, go to an online forum, build a facebook family, whatever it takes to create a bond with people who get it. Because one day you will need to make that phone call. And another day you will receive that call. (or email...or private message...) And in both cases, you will be so very very thankful that you have each other to whom you can reach out. To paraphrase Woody from Toy Story: "Special Needs Parenting Buddy...if you don't have one, GET ONE!"