Tag Archives: autism acceptance

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.

Random Thoughts during a Meltdown

Posted on by
2

Mushroom Cloud

• It’s only a video game. Why can’t he see that? He has a lot of others; he doesn’t need to play this one.

• Why would his older brother forbid him to play this game? “It’s mine. I bought it with my own money, and I don’t want anyone else using it.” This is such a hard policy to enforce when you are one of six children. But he seems oblivious to how much anguish he’s putting his brother through. That part of the equation doesn’t enter into his calculations.

• Ah, the two-edged sword of autism! Perseveration and emotional dysregulation on the one hand (the younger brother), and a cold, hard adherence to fact and logic on the other (the older brother).

• The poor kid! He can’t stop crying. I know I shouldn’t talk yet. Just keep rubbing his head and let him get it all out. Still, there are so many things I want to tell him. Even once he does calm down, there are still a few things I’ll have to keep to myself. Like my fear that he may never find a way to take control of his own emotions. Like my reluctance to think about the kind of future he may have if he doesn’t work through this stuff.

• Okay, so we’ve been up here in my room for, what? Nearly thirty minutes. Dinner is getting cold, and I’m hungry. But this boy needs help. He was yelling at everyone, throwing things, and shouting me down every time I tried to calm him down. Now he’s just crying quietly, bemoaning his fate and asking why his brother has to be so mean to him. Give him a few more minutes, and he might shift a little more.

• You know, meltdowns are curious things. You can’t just say, “Oh, he’s just having a meltdown; he’ll be back to normal in a few minutes.” I used to say that, but I don’t think it’s fair—to him or to me.

—It’s not fair to me because it keeps me trapped in the mode of thinking that this isn’t his “normal,” that these are just aberrations to be endured when they crop up. Kind of like when you get the flu once every few years. So every time this happens, it takes me by surprise. “Where did this come from?” As if I didn’t know. And that makes it all the more draining emotionally.

— It’s not fair to him because I’m not helping him learn how to deal with these things. He’s getting older now—he’s into his adolescence—and he’s going to have to start figuring himself out. I can’t be there to hold him every time something goes wrong. He needs to learn how to stand on his own two feet. But it doesn’t occur to me until we’re in the middle of a meltdown. Then, it’s too late to make any progress.

— It’s also not fair to hold him to expectations that he cannot fulfill. That will only make him feel guilty and inadequate.

—At the same time, his oldest brother has been through a lot of these behaviors and has come out the other end. Granted, he is not as severely affected by ASD, but still he is leveling off. I wish I knew what the future holds for this child of mine!

• This is who he is. At least for right now. Meltdowns are part of his make-up, not just random things that descend upon him. He is autistic, and that means he will get overwhelmed. He will take things too literally. He will get overwrought over issues we consider minor. He may never get over it. Maybe he will, but it’s not a sure thing. Anyway, it doesn’t matter. How can I help him right here, right now? And tomorrow and the next day, how can I teach him?

• Okay, now he’s moving into quiet, occasional sobs. He may be ready to talk. Maybe I can walk him through what happened so that he can get just a little bit smarter, just a little more self-aware. “What do you think, son? Can we talk about this?”

• Dammit! That made him begin crying again. I wish I knew how to read him better. I hate being the one to push him over the edge. Not because dinner is still waiting—stone cold by now—but because this is only going to make him feel worse about himself.

• Back to his older brother. What should I do about him? I know if I talk to him about sharing and being generous, he’ll use his [flawed] logic and his [unnecessarily] strict sense of right and wrong to push back. And when he pushes back, he really pushes back. If I don’t address this, he’ll lose another opportunity to learn how to understand other people and their emotions.And I’m getting tired. And really hungry. How far do I push him? How can I reach him and help him think with his heart as well as with his brain?

• Oh wait, the boy is coming around. He was hunched over himself on the bed; now he has unwrapped himself and is lying down with his head on my chest. Progress! I don’t have to keep rubbing his head now. I can just grasp his hand and give it a reassuring squeeze.

• “It’s going to be okay, son. Don’t worry; I’m not mad at you. Are you ready to go down and have dinner? Yeah? Okay, let’s get something to eat.”

• Well, the fries are cold now, but at least the BLT is still okay—it’s a sandwich, after all. There he is, quietly eating. His brothers and sisters have already left the table. Now it’s just him and Katie and me. She calls him over and gives him a big hug. He smiles, somewhat sheepishly. She speaks words of consolation and encouragement to him. God, I love her! She is so good at mopping things up.

• Now he comes over to me, wraps his arms around me, and doesn’t let go. God, I love this kid! Whatever happens—meltdowns or no meltdowns, the future be damned. Right here, right now, I love my son. Just like I loved him when he was crying. Just like I loved him when he was throwing his fidget spinner across the room. Just like I’ll always love him. No matter what.

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.

Pray for Us Sinners . . .

Posted on by
1

My little girl (10) was having a rough time at Mass this morning. Anxiety about other family members’ struggles became too much, and she couldn’t get seem to stop the negative thoughts. Misperceptions and anxieties then led to her acting out in an angry/sad combination that had begun to wear me down as well. She feels everything so deeply that it’s like she takes on everyone else’s burdens.

But then halfway through the Mass, she asked if she could go to the back of the church, where a little alcove dedicated to the Virgin Mary is (pictured above). “I can’t stand being here,” she snapped.

“Only if you promise to come back,” I said. I didn’t want her just wandering around back there. She grunted in assent, and stomped off. She loves drama.

While she was gone, I took the opportunity to try to reset myself in prayer. Heart rate came down. Breathing became more regular. Lumpy throat diminished. A good start.

Five minutes later, as the homily was wrapping up, she came back. Stepping lightly. Smiling. She gave me a big hug and said she was sorry. The rest of the Mass passed uneventfully. Peacefully, even. I felt another lump in my throat, but this one was okay.

After Mass, I asked her what she did in the back of the church. “I just sat there for a few minutes and looked at the statue of Mary.” Innocent. Matter-of-fact. No drama.

“Do you know what happened?” I asked.

“What?”

“You went to Mary, and she prayed for you. She prayed with you. And Jesus answered her prayers and yours. How else can you explain the dramatic change?”

“I guess you’re right,” she shrugged. Then she went off to grab a donut—as if nothing had happened.

Everything Happened.

Now, it would be easy to attribute my girl’s change to her taking a break. It would make sense if you wanted to say that getting away from her siblings and changing her environment was all she needed to do her own reset. But the change in her demeanor was so dramatic that this can’t be the only answer. Not to mention how little time it took for her to turn around.

Besides, as a Catholic I believe in the Communion of Saints and the special role that Mary plays as our spiritual Mother. In fact, many are the Rosaries I have prayed asking for her maternal intervention in my kids’ lives. And on more than one occasion I have experienced blessings from her myself.

That’s the thing about faith. It doesn’t need to “disprove” the other explanations that may be out there. It’s not as if it’s a zero sum game, where you have to ascribe everything to either psychology or spirituality. Faith is capacious, generous, encompassing. It’s also humble. It doesn’t feel threatened when other possible answers are put forward. The Bible may describe God as a “jealous” deity, but this is not the kind of jealousy it’s talking about.

Every special-needs parent has to find the best way to help his or her children and to deal with the unique challenges that he or she faces. As for me, I can’t imagine walking this road if I didn’t have recourse to prayer. I can’t imagine being left with only medical, psychiatric, and pharmacological answers. If my kids have taught me anything, it’s that there’s more to them than the sum of their various material parts. There’s a longing to belong. There’s a drive toward unity and community. There’s a capacity to love and to receive love that goes beyond simple reciprocity. There’s a “fittedness” for heaven that I can see in their eyes.

So it makes perfect sense that when my girl went to spend time with Mary, Mary spent time with her. And prayed for her. And blessed her.

My girl may not think that much happened during those five minutes. But I know that everything happened.

Both to her and to me.

 

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!