Tag Archives: special needs families

In Memory of Me

Posted on by
Reply

img_0077

So we made it to Holy Thursday Mass yesterday again this year. It’s a pretty big deal in the Catholic Church, since it is the beginning of our Easter celebration. It’s also pretty important because on Holy Thursday we remember the Last Supper, when Jesus gave us his Body and Blood in the form of bread and wine and told us, “Do this in memory of me.”

. . . Into the Hands of Sinful Men.

I love the idea that by saying, “This is my body . . . This is my blood,” Jesus made sure he would be present to us all the time. I’ve always loved the way that the Last Supper foreshadows the cross: in both cases, Jesus gave himself into the hands of sinful men so that he could lift them up to be with him. I find it moving that Jesus continues to give himself to us—sinners though we are—every time we come together to celebrate Mass.

Now, before we get to all the autism stuff, do me (and yourself) a favor. Let this thought sink in for a moment: Jesus continues to let sinful, conflicted, duplicitous, envious, lustful, bitter, [insert sin here] people take him into their divided hearts.

Six Sacramental Signs.

All this was in my mind on Thursday as we entered the church. I was really looking forward to a deeply meaningful, spiritual experience at the church. But alas, it was not meant to be. A couple of our kids had had a rough day at school, and they brought their agitation with them to church. One had forgotten to take her ADHD medicine, so she couldn’t stop chatting with Katie, fidgeting all over the place, and trying to engage her brothers. Another was worried about a difficult test that morning, and his anxiety worsened as the Mass went on. A third just plain didn’t want to be there, and he made sure to let everyone know it.

So there I was, trying to keep the kids from boiling over, trying not to distract the people around us, feeling more than a little uncomfortable with the way we stuck out, and feeling cheated out of my time with God.

Then it hit me.

Jesus has given these children to me. He has placed them into my hands. He knows what kind of person I am. He knows my weaknesses and my faults. He knows my selfishness and my lack of generosity. He knows my impatience and perfectionism. And still he saw fit to give me six kids with special needs. Six kids who would need extra attention. Six kids who would need a creative, flexible approach to parenting. Six kids who would need extra love to help make up for the world’s lack of understanding and acceptance.

I saw this right there in the middle of Mass. These kids are also the body of Christ. They are all signs of God’s beguiling creativity. They’re signs of his maddening ability to call forth the better part of my human nature while at the same time exposing my darker parts. They’re sacramental signs who both symbolize God’s mystery and impart his grace to everyone whose hearts are open.

In the midst of their everydayness, their struggles, and the occasional banality of their lives, there is something sacred about my kids. Like the Eucharist, their simple, unassuming appearance belies their wondrous complexity and depth. And like Jesus himself, they are a sign of contradiction, especially in the way their place on the autism spectrum evokes extreme reactions, both positive and negative. Yes, they are the body of Christ, and God has placed them into my hands. Just as Jesus is placed into my hands at every Communion line.

The Divine Risk-Taker.

I don’t know that I would take such a risk if I were God. There are a lot of men who would do a lot better at this than me. But then again, God seems to be in the risk-taking business. Again, it’s like the gift of his Body and Blood in the Eucharist. Jesus knows the risks involved in giving himself to us. He knows that not everybody will accept him with the right state of heart. He knows that nobody will ever grasp just how awesome this gift is. But none of this stops him from offering himself to us. Over and over again. In love and humility. For our sakes.

In a similar way, Jesus has seen fit to entrust these six children, these six images of himself, into my hands. He knows the risks. He knows that I won’t always be worthy of the gift. He knows that I’ll never fully understand how much he has given me. Still, he has given them to me and said, “Here, I trust you.”

At the Last Supper, Jesus told his disciples, “If I have washed your feet, you ought to wash each other’s feet.” He also told them, “Do this in memory of me.” He says the same thing to me. Every day. Through every one of my children. In every challenge and melt down and IEP meeting and therapy appointment and sensory overload.

Wash their feet.

Do it in memory of me.

And all I can do is stand in wonder that he trusts me so much.

Happy Easter, everyone.

Outcast by Association

Posted on by
1

Jesus and the Leper

This kind of thing happens a lot, but I don’t often share it in this forum: a passage from Scripture or an insight from prayer will speak directly to my life as an autism dad. This time, it’s an insight that came from the Scripture readings at Mass today (Sunday, February 11). So, having explained the spiritual nature of this post—at least the beginning of the post—let me move ahead.

First, the Story.

Today’s Gospel reading was the story of Jesus healing a leper. It’s in Mark 1:40-45. The man, somewhat timidly, says to Jesus, “If you will it, you can make me clean.” Jesus, in reply, touches the man and says, “I do will it; be made clean.” And the man was healed.

But then Jesus tells the man to keep this miracle quiet—only to show himself to (not necessarily tell) the priests, who had the power to release him from his exile and allow him to return to his home, his family, and the synagogue. So what does the man do? He goes around telling everyone what Jesus did.

Mark tells us that because of the man’s loose lips, “it was impossible for Jesus to enter a town openly. He remained outside in deserted places.” By touching the infected flesh of a leper, Jesus became ritually unclean, just as the leper had been. And because this fellow spread the news, everyone knew what Jesus had done. He was now barred from entering any town or village. He couldn’t even go visit his mother back in Nazareth.

A Simple Choice.

Okay, so that’s the story. Here’s what hit me: Willingly (I do will it), Jesus took upon himself the isolation that had been this unfortunate man’s lot. The ritual uncleanness had passed from the leprous man to Jesus, so Jesus could no longer be around other people any more. And without a peep, he accepted the consequences of this action. Knowingly, by his own actions, he placed himself under the judgment of the law.

What I found interesting is the simple, unassuming way that Jesus did this. There were no recriminations against the upholders of religious purity. No sense of superiority over those who enforced the law with no regard for the people they were condemning. No protest against the unfairness or extreme nature of the judgment. He quietly accepted the verdict. He willingly became an outcast so that this fellow could be reunited with his family and friends.

Outcast by Association.

There’s a parallel here for my life as an autism dad. Over the years, I have had countless meetings with teachers, administrators, school psychologists and school counselors. Along with Katie, I have pushed and pulled, schmoozed and confronted, plotted and pleaded to get my kids the help they need. I have even gotten one teacher fired and another demoted because of the way they worked (or failed to work) with my kids.

As you might expect, I have become persona non grata in a few schools. I have been identified as that dad on more than one occasion. One assistant principal became very adept at not returning my calls or e-mails. A teacher once told me, “You know, not everyone is cut out for school” as an attempt to keep me from pushing for help for my son. Another administrator grew so weary of my advocating that all sense of comity shriveled up, and every communication became unnaturally stiff and formal. It’s as if I had become an outcast myself.

I’ve done all of this so that my children could be more welcomed into the community of their classmates and into the community of learners that is their right. Of course, I’m willing to do it. I’d do anything to make sure my kids get every chance to succeed.

But before you get the idea that I’m a hero—or that I think I’m a hero—let me give some perspective.

Parting Ways with Jesus.

As I said above, Jesus became an outcast willingly. There was no bitterness in his heart against those who judged him. He felt no recrimination against the people who barred him from entering their towns. He held no judgment against his judges. There was only concern for the ones who had been excluded and demonized. He even forgave the people who crucified him.

I, on the other hand, can give in to the very same us-versus-them mentality that I have railed against when it is aimed at my children. I can issue harsh judgments about their teachers’ ignorance, blame the school administrators for their callousness, and even issue a blanket condemnation of all the neurotypicals around us—everyone, that is, except my close friends who, of course, get it.

So this is where Jesus and I part ways. Jesus feels just as badly for the people who do the judging as he does for their victims. In his eyes, everyone is a victim. They may be victims of the structures of sin in the world that convince people that they get ahead by pushing other people down. Or they may be victims of the structures of sin in their own hearts that make them demonize the “others” around them—the attitudes of rivalry and animosity that lurk inside everyone’s heart. Or, most likely, they are victims of a mixture of both.

It Starts with Me.

Of course, I will never be as pure or humble as Jesus. But that doesn’t mean I shouldn’t try. I don’t want my kids to grow up with a victim complex. I don’t want them to grow up bitter at the world. I don’t want them to develop some perverse sense of superiority to the “haters” and “judgers” out there.

It starts with me. Children learn what they live, so I need to create an environment of openness and generosity in our home. I need to model forgiveness and understanding. And because my kids can have a hard time grasping social cues and relationships, I need to be as clear and patient as possible.

This, I think, is one of the most important lessons I can instill in them. Because no matter where they go or what they do, they’ll always stand out. Maybe not all the time, and maybe not a lot, but they will. It’s inevitable; they’re too different not to. And no matter how much progress we make as a society, there will always be people who don’t understand. People who treat different people as lesser people. People who write them off. Even people who turn them into scapegoats.

If I can teach my kids to forgive and not judge, they will develop into men and women whom people will want to be around. They’ll find their communities, their homes, their tribes—places where they can thrive and make a difference.

It starts with me. But then again, it really doesn’t. It started with Jesus. He set the tone. He showed the way. And by his grace, I can too.

A Perplexing Plethora of Plushes

Posted on by
Reply


With great pride, she posts this picture on Facebook, reveling in her massive collection of Pokémon plushes.

I see the post, and all I can think about is the anxiety, conflict, tension, and melt-downiness related to these infernal creatures.  

• The extra backpack stuffed with as many as possible to help her make it through a school day. 
• The destruction she has wrought to other kids’ plushes in order to fashion her own copycat creations.

• The often tear-filled way she has obsessed over the next plush that she absolutely, positively has to obtain within the next few days.

• The huge mess she has created in her bedroom because she needs all these creatures around her when she sleeps–and she needs them to be in a heap, not in some orderly grouping.

However . . .

• She sees the post as a way of celebrating her best friends and most constant companions.

• She has found countless hours of consolation with these plushes. Especially in times of stress and fear.

• These creatures have helped her maintain a good portion of her innocence and childlike nature well into her teenage years.

• They have sparked many a creative story-telling session. Granted, the stories exist in her mind and are rarely shared with other people. Still, the creativity abounds.

• She knows that she’s different from most of her peers, and she suspects that these creatures will always keep her company, no matter how many or how few her human friends are.

• For better or for worse, each of these plushes plays an important role in her life.

So here we are. I love this child like mad. She has pried open my brain in ways I could never have imagined. And the wedges she has used are often these soft, cuddly, beguiling, bedeviling . . . things.

Good Golly, Miss Molly

Posted on by
1

fullsizeoutput_47fd

See that little ball of cuteness on the left? No, no, not the cat. The little puppy in my daughter’s lap. That’s Molly, the latest addition to our household. (For those of you who are keeping count, that makes 6 kids, 5 cats, 2 dogs, and 1 fish. That’s right; our four-legged children now outnumber our two-legged children.)

Why another dog? Because we like chaos, that’s why. At least, that’s what more than a few people must be thinking right now. But there’s a method to our madness. Molly is going to be our family’s therapy dog. We had been toying with this idea for a number of years, but recent events have convinced us that having a therapy dog is more than just a neat idea. It’s a necessity. Too many of our kids are dealing with anxiety and depression in addition to their ASD. Too many of them find emotional regulation a challenge. Too many of them lead too isolated a life and need help in getting out of themselves.

Molly is a mix between a Cavalier King Charles Spaniel and a Cocker Spaniel. That means that she is pretty smart (Cocker), but also a love bug (Cavalier). It means that she will be perfectly content to sit in your lap for hours on end (Cavalier), but she will also love a good romp around the back yard (Cocker). Our hope is that we will be able to train her to recognize when one of our kids is getting too agitated, and feel free to go over to him or her and offer comfort and friendship. We also want her to sense when one of our kids needs a warm, affirming cuddle. And, of course, we want her to not pee in the house.

This is much more than sit, heel, and roll over. Our goal is to get Molly to the point where she can wear a vest and be recognized as an “emotional support” animal. We want to be able to take her out in public, bring her into stores, and even get approval for her to accompany one of our kids to school. So there’s a good deal of work to be done.

Of course, none of us is an expert in training puppies. Which means we’re going to need some serious help. Fortunately, Katie found a married couple who have experience working with kids on the autism spectrum and their dogs—and they’re willing to come into our home to train both the dog and us. This is so important. Training out on a farm or in the middle of a PetSmart can only go so far. Molly will have to become very comfortable performing her job in our home, and it will help our kids immensely if they learn about Molly in their own environment.

Oh, and these trainers are going to work with our older dog, Roxie, too. (That’s her below.) According to them, Roxie is going to train Molly as well, even as she gets some training herself. After all, she speaks dog! So by the end of the training—months and months from now—we’ll have two support dogs.

fullsizeoutput_47fe

So stay tuned. I’ll be giving you updates every now and then. Besides, she’s so cute!

Adventures in Airport Advocacy

Posted on by
2

Airplane! Logo

Every now and then I am reminded of how far we have to go before our world welcomes people with disabilities and neurological differences. Yesterday gave me two such reminders back to back. I was at the airport at the start of a business trip to visit my publisher in St. Augustine, Florida.

“Gawd!”

The first reminder happened as I was standing in line, waiting to board the plane. I spot an older man (~70-75) walking in circles at the gate area. He is cross-eyed and has the pleasant-but-pouty look of someone with cognitive challenges. When his care giver walks him to the gate for pre-boarding, he hands his pass to the agent and declares in a loud, excited voice, “I’m ready to fly!”

The agent smiles back. “Yes you are, sir,” and shares an ill-timed high-five with him.

A beautiful scene. Until the woman waiting in line ahead of me (~60-65) grimaces and turns to her friend. “Gawd, I hope he don’t end up sitting next to me,” she practically spits. “I’m here to relax, not deal with his kind of people.”

Her friend nods. A knife to my heart. A very brief thought that maybe I should say something. But I decide against it. What’s the point? She does not seem the type given to respectful dialogue. Instead, I offer up three prayers: one for the man, one for the woman, and one for myself.

For the man: “Thank you, Lord, for this fellow’s joy. Please keep him safe in your arms.”

For her: “Lord, please help her become more understanding and welcoming. I cannot fix stupid, but you can fix everything. Please help her out here.”

For me: “Please, God, help me be more forgiving. And maybe more brave.”

The Regular Dads Club.

The second reminder happened on the plane. I sat next to a Navy JAG officer and his wife. Both about my age. A delightful couple. Pleasant, engaging conversation with a good amount of back and forth between the JAG and myself. (The wife was a quiet sort.) We talked about our travels: his deployments to Iraq and Addis Ababa, and my six months in Tehran and post-Soviet trips to Central Europe. We talked about school: him at the Naval Academy, and me at The Mount. We talked about politics—after some careful circling to tease out each other’s views, of course. (He didn’t like Trump either, so we continued amicably.)

Then we talked about kids. His daughter, a linguist who was getting her Air Force commission this weekend. His son, who just graduated from Cornell, his second son, with an MBA from Stanford. And his third son, who is graduating from high school with a swimming scholarship to Colorado. He was obviously proud of his kids, but not in a snotty way. He didn’t even humble brag.

Then he asked me about my kids. “You have a lot of kids. Have you got colleges all figured out yet?” When I told him that we weren’t so sure about who would be going and who wouldn’t, he looked puzzled and asked why. I told him about their ASD diagnoses and some of the challenges they face.

It got awkward. He tried to say something like, “Well, not everyone’s cut out for college,” and “There’s plenty of trade jobs out there that need to be done.” I tried to change the subject, but he had essentially checked out. The conversation politely petered out, and a couple of minutes later, he opened his laptop, plugged in his ear buds, and settled in to a movie.

I don’t fault him. He just didn’t know what to say. His world had been circumscribed by success after success—of course, with hard work and sacrifice—and he didn’t have any reference point to orient him to special needs parenting. It’s a shame, too. We were having a good conversation. For a few moments, I was a Regular Dad. I was part of the club. I was just like everyone else.

Don’t get me wrong. I like the club I’m in. It would just be nice to bridge the gap between these two clubs every now and then. 

Even better, it would be even nice if there were no gaps. No separate clubs at all.

That’s why we need to keep advocating.