I am hot...

it just comes in flashes.

Learning to Art

Posted By on July 19, 2015

So in all this time that I’ve neglected you, you might wonder where I’ve been. Aside from being pretty busy with family, I’ve become consumed with a new passion. Art. More specifically, learning to art. You see, my daughter told me for years that anyone can learn art, and for years I didn’t believe her. Till one day I found myself obsessed with it. And I learned two things: one, I do not have natural talent. Some people do. I don’t. And that’s ok, because two, it’s true: it can be learned.

What I’m finding is that I dearly love the learning process. I am enjoying trying new things and following tutorials. I am really enjoying experimenting and following lessons. And I am loving trying new materials and getting my hands messy. I even sometimes like what I produce.

As I go through this learning process, I am beginning to realize I would really like to share the journey. I don’t have all the answers, and some of what I think  I’ve found will probably be wrong.  But I’ve come to believe that creativity is to share in God’s work of creation. Maybe the creative urge is part of what it means to be made in his image. So with that in mind, I have become convinced that art – with or without talent – is worthwhile. And if my faith is worth sharing, maybe so is my art, and my journey into its world.

I can’t wait to keep learning. I hope you’ll join me!

Runaways and Prodigals

Posted By on June 30, 2015

I think we’ve all run away from something or someone at some point in our lives. Running away sometimes looks like a big, scary, life changing thing like a kid running away from home, or a spouse getting divorced. Sometimes, though, it’s less visible to the outside world. Maybe it’s a worshiper who stops going to church, or a friend who starts neglecting relationships.  Maybe it’s a retreat of a spouse into a hobby or non-communication, or an employee who stops trying.

It could even be a blogger who goes six months between posts.

And do you know what all of these scenarios have in common? A feeling of failure. Sure, there are other reasons for any of these things; but I contend that the single biggest reason for relationship breakdowns is a feeling of failure.  When the Prodigal Son was jealous of how well the pigs ate, he hit rock bottom and finally returned; but why did he take so long to return? Was it because his plan was working out so well? No, he didn’t want to go home and face his father and brother with his failure. For him to find, finally, the courage to return it took a realization that he had no other options.

Biblical parables reflect real life. Sometimes the only reason a spouse or a kid sticks around is because they have no other option. Sometimes the only reason a worshiper keeps going to church is because he or she feels there’s no choice. And having no choice is better than breaking up the foundation of marriage or faith, but it’s not the best way. The best way is to break the hold of the thing that makes the runner want to run. The best way is to help the runner stop feeling like a failure, or to prevent the runner from feeling that way in the first place.

I have a confession to make. I’ve run. I haven’t left my Charming and Patient Husband (and I have not wanted to, either.) But I’ve been terrible about church attendance. I’ve been terrible about maintaining friendships. I’ve been terrible about blogging. All of these things matter to me, and I’ve essentially run away because I felt like a failure. I have something to learn from them. I also have something to learn from the thing I haven’t ever felt like running from, my marriage.

What I have learned:

  • If you feel like a failure and you run away, you feel like a bigger failure. The longer you stay away the more of a failure you feel like. Bite the bullet and return.
  • If it’s an unsafe or unhealthy thing you’ve run from, don’t return. That’s not running, it’s rescue. (But don’t con yourself into thinking “I don’t like it, so it’s unhealthy.”)
  • Prayer and discernment are always helpful and healthy.
  • The key to staying on track with another person is making sure that other person knows that he or she is successful.
  • The key to staying on track with another person is making sure that other person knows that he or she is successful. That’s not an editing error. I repeated it because it’s that important.

A friend of mine once said “for every one negative thing you say, make sure you say five positive things.” That was some powerfully good advice, and it goes really well with helping to make the other people in your life feel successful. Or, I should say, know they are successful. Because if they feel successful in their relationships they probably are.  Tell your husband what he does right. Tell your wife what you appreciate about her. Let your kids know that you are proud of them, and why.

And finally, what if you are the one feeling like a failure? Go back. If you haven’t gone to Mass in a while, go back. If sitting with one foot in the water hasn’t motivated you sufficiently, put both feet in. And remember, God is with you. The Bible says “Pray without ceasing.” What better time to remember that than when we are struggling?

Thoughts about prayer

Posted By on December 1, 2014

I was thinking today about worry, and all the things I worry about… and there were a lot. I’m a certified worrier. But then I think about all the things I’ve worried about that haven’t come to pass; and I realize that I don’t even remember what most of them were. Maybe they weren’t as important as I thought at the time that they were. And those that did come to pass? They didn’t destroy our life. And worrying didn’t stop them.

Prayer simply works better than worrying.

But… so far we are still talking just about earth prayer. Earth prayer is when I pray for my earthly needs, or my earthly concerns. Not all of them are “gimmes” but they are about the things that matter to me in this life, from the selfish (please let me get such and such) to the unselfish (please help me to be a better person) to the compassionate (please help the victims of the latest catastrophe.) But they are all about this life and its concerns. And there  is nothing wrong with praying for this life and its concerns. Bless my friend. Heal my child. I offer you this day, Lord. These are good prayers. They contact God and invite him into my life. They connect my life with the love of my Father.

They are probably the prayers Martha prayed. And she had a good lot; but Mary chose the better lot. Because she prayed a different kind of prayer, as well.

Mary didn’t just bring God into her world; she brought herself into God’s world. That’s what meditative and contemplative prayer are made of. When we stop looking at our world, and start looking at Christ’s.

My beloved is mine and I am his.

He pastures his flocks among the lilies.

A shepherd doesn’t plant lilies in the wild grazing pastures on faraway hills. He doesn’t plant them in enclosures where sheep normally live. He plants them in his very own garden, within the walls of his very own courtyard. Our Shepherd is inviting us to be fed at His own home. When our prayer is so stuck in the here and now that we forget to glance in the direction of His lilies, it is as though we didn’t even recognize that we are invited into His courtyard, on the very edge of Heaven itself. And we keep grazing away at the dried summer grasses on the wild hills, and begging our Shepherd to water us. Patiently, He leads us to still waters to drink; but all the while He is inviting us to taste the springs that flow from Paradise.

When you have a need, pray for that need. When you have a friend, pray for that friend. These are good, good prayers. But don’t forget to gaze at the Shepherd in His own garden, too. Don’t just invite Him into your world; accept His invitation into His, as well.

God of the Universe

Posted By on October 9, 2014

I read this post today about the size of “space” and I really think it’s worth sharing. Go ahead, click on it and go read it. I’ll wait.

There. Aren’t you glad you took the time?

Here’s the thing: there may be many perspectives on the size of the earth, relative to the rest of space; but there are also many perspectives on what this information can mean to us. Scientifically, obviously, we can see all sorts of implications, not the least of which is the question of how far our current understanding of physics can take us. And then there are the obvious questions about whether this means there might be other life out there. I’m not going to speculate on either of these.

Rather, I want to take you on a journey into heaven. Or the heavens.

Has it ever occurred to you how big a God it takes to make something this astounding? For millenia, thinkers have asked the question: Did God invent us, or did we invent God? No matter how strong your faith is, if you have never at least acknowledged the question you are probably a rare person. Questioning doesn’t mean we have weak faith, it means we seek truth. Since I believe that God is the author of truth, I see no contradiction whatsoever. And I’ve never been disappointed. It seems ridiculous to me to think that everything I see could come into being by means of something else that came into being at the hands of something else that came into being, etc. The only way it makes any sense, logically, is there must have been a Creative Force that never came into being, that always was. So asking the Big Question about God isn’t scary to me as a believer, because logic backs up my faith, and my faith includes trust in God as the ultimate Truth.

But today, when I saw these pictures of this little tiny corner of space, my thoughts on the subject did, indeed, take on a new perspective. Not a new belief, but a new depth.  A God who can create the earth, and all I can see on earth and in heaven, is astounding. A God who can create the inner life of biology, a system that can maintain itself for this long, is truly awe-some. But a God who can create so much more than I can even imagine in that tiny corner, and a God who can create a universe where that genuinely unimaginable array is just a pinpoint….

This God is mind-boggling.

Then, to take it backward. Our earth is not even a fleck on that pinpoint in space. Our earth should be invisible. Here I am, a single organism on an invisible planet, right alongside you. And God sent His Son, Co-Creator of the universe, to be one of us. To rescue us.

Yes, you. Invisible you on an invisible planet in an invisible solar system in a corner of the universe tinier than that invisible one that teems with the unimaginable. He sent Jesus to you. And me.

The One who created all that considered us important enough to rescue us from the sin that we brought upon ourselves. That is love.

Autism Awareness Day

Posted By on April 2, 2014

It seems ironic to me, to say the least, that we received Monkey’s evaluation report with formal diagnosis an hour and a half before the beginning of Autism Awareness day. While we’ve been pretty sure about this diagnosis for 2 years now, it’s a tremendous relief to have validation. Today is also the day of our annual 504 meeting. (For those of you who aren’t aware of what that is, it is the meeting at which plans are made for special needs students with medical needs, who do not qualify for an Individualized Education Program.)

My Charming and Patient Husband has often said “Autism awareness? How much more aware can we get?” But today I read an eye-opening blog post from Autism Daddy that made some good points about the lack of awareness in the general public. And really, I have to agree if I give it some thought. Yes, the public may be aware that autism exists; but that’s far from a working awareness. To know it exists does not mean to understand the difference between a meltdown and a temper tantrum. To be aware that someone you know has autism is not the same as being aware of the difficulties they face, or the special needs that must be met. To be familiar with their lunch time medicine routine does not equate to familiarity with the hours of therapy that led to it and will probably lead to future medicinal changes. And it certainly does mean familiarity with the emotionally draining consequences of forgetting or running out of the medicines.

You know what else many people are not aware of? The fact that Autism isn’t simply a “mental illness” but a combination of thinking differently and a medical condition.  We’ve come a long way in that regard, at least.  The condition is no longer referred to as Refrigerator Mom Syndrome. Medically, we’ve come to the point of realizing that people with Autism have much more potential than was once believed. Therapy, love, and a variety of approaches can lead us to breakthroughs. We can’t “cure” Autism, but many of us do not want to. I wouldn’t change my Monkey and her delightful imagination for the world. What I would change is her coping ability; and we are working on that. That’s what the therapy and the 504 plan are for. And that is why we play games like the “problem solving game” at home. By teaching her the skills to be happy and successful I am not aiming to take away this condition, but to help her wade through this sometimes uncharitable world. Like a child with any other condition, we do what we have to do to help her meet her milestones. A parent of a child with Type 1 Diabetes helps his child to survive with insulin. A parent of a child with Cerebral Palsy helps her child to learn to walk. A parent of a child with Autism helps her child to learn social skills. In many ways, it’s not that different.

In a few ways, though, it is quite different. Since Autism is an “invisible” disability, it still gains stares and judgement. It takes a little strength to forgive those who suggest that she’d be “good” if we just spanked her more. It takes even more strength to keep my mouth closed and not respond with “That’s why God didn’t give her to you.” It takes strength not to be smug, and it takes strength not to feel humiliated, all at the same time.  And it really, really takes strength to forgive people who see you parenting day in and day out and still judge you, assuming that your child’s behaviors or appearance must mean you are neglectful. There is no room for neglect.

There is No. Room. For. Neglect.

Not when it takes two hours to get her dressed in the morning, and an hour a day to keep her room marginally tidy. Not when you have to quit your job to be available full time for the constant phone calls from the school. Not when you are at the school almost every single day dealing with meetings, meltdowns, discipline, counseling, disruptions, and anxieties.

Yet there are people who can see all that and still assume that you must be neglectful, because no child would choose to look like that and behave like that.

And that hurts. It hurts me, it hurts my husband, and it hurts my children. And it hurts many other Autism families. So, yes, Autism Awareness is still needed.

Then there are the teachers who know nothing about Autism. Many do, but not from training. A few have the training, and many more have learned firsthand, in the trenches. Many, though, still do not know much about Autism. They are well-intentioned, but they’ve been taught nothing. I know this, because I have a teaching credential and Autism was never once mentioned in my schooling. Not once. I learned what I know by reading. And reading. And reading. And by watching and loving. The key to understanding Monkey has always been loving her enough to pay attention even when she can’t stop talking for 45 minutes and when she starts the same sentence over and over again until she gets it just right. You can’t understand someone’s reasons for what they do unless you understand at least a little of how they work. And with children who have extreme anxieties and trust issues, it can be very hard to get “in” unless they know how firmly you love them.

So, yes, Autism awareness is still needed.

If you are not Autistic, and you do not have an Autistic family member, and you think “awareness” has been overdone, let me ask you one favor. Please, ask yourself to take awareness a step further… to go beyond awareness of its existence, into the awareness of the special needs these amazing people have. Go beyond awareness of what Autism behaviors look like, into the awareness of the reasons for those behaviors.

For me, Autism isn’t a disease. It’s a little girl who, for a whole year, wrote “Monkey” on her papers where it asked for her name. It is a boy who talked about keys for two years, until he discovered Sonic the Hedgehog. It’s a child who is lonely, and really does want friends regardless of what the old books say, but doesn’t know how to interact with them. Autism is people. Like all people, they have unique needs and hopes and frustrations.  If you take the time to get to know them — really know them, in the sense that you win their real trust because they know they can always count on you — then, you will be truly aware.

Guilt Free Dipping Snack

Posted By on January 3, 2014

I don’t usually do pictorial foodie posts, and when you see my photos you will understand why. But I’m so pleased with my latest snackie I couldn’t resist sharing.

Inspired by the bread and oil/vinegar dips I’ve seen in restaurants, I came up with a variation that eliminates the wasteful carbs and adds health benefits, while (I think) improving on the taste.


It’s just four ingredients:

I will say though, that I think one of the reasons this was so thoroughly enjoyable was because of the quality of the ingredients. You see, I didn’t use any old vinegar, I used a balsamic vinegar that happened to be better than many of them I’ve found at the grocery store. (Luck, I’ll grant you. I can’t take any credit for the choice.)


I don’t know anything about it, but it has a pretty bottle and a deep, dark taste. The one I linked to from Amazon doesn’t have the pretty bottle, but it’s the lowest price I found there.

I didn’t use any old oil, either. I used flax oil, and the best I could find. I read the reviews of different brands and chose the one that sounded like it would taste the best. The reviews were right; it’s kind of buttery, kind of nutty, and altogether delicious. Flax oil has nutritional benefits like omega 3 fatty acids, which are good for brain development and for reducing inflammation. For someone with Sjogren’s Syndrome, anti-inflammatory is good. Flax oil is also very good for anyone with dry eyes. Many people take flax oil every day for its benefits, but this tastes so much better than a pill or a spoonful of oil!


The next extra special ingredient, and I cannot stress this enough, is Cyprus Mushroom Flake salt. Oh. My. Goodness. This salt is amazing. It isn’t terribly expensive, but you will be shocked that salt can be this good. I’ve begun trying (and loving) finishing salts lately, but this and Smoked Cyprus Flake are by far my favorites so far. The flake salt adds a delectable crunch that bursts in your mouth without being overly saline, because the saltiness is spread over a very thin flake. And these two salts are both very rich. I don’t know how else to describe it.


Finally, there is the lettuce. Plain old iceberg lettuce, because for some strange reason I love the stuff. If you don’t, feel free to substitute with other kinds of lettuce, or even with other greens completely (I bet fresh mustard greens would be delicious). But I like the crunch of iceberg.

Once you have the ingredients, the rest is super easy. Tear up your lettuce into dipping-sized bites, and sprinkle finishing salt over it. In a separate dish, pour a small amount of balsamic vinegar and flax oil, and then dip and eat. It tastes like a treat, but it’s good for you and even low-calorie.

Note to Monkeytot

Posted By on December 23, 2013

Taping a caster wheel to a razor with masking tape does not constitute “making a present.”

Diagnosis Matters: Some words to practitioners for when autism is suspected

Posted By on December 4, 2013

As I think about the issues we’ve encountered with school and two of my kids, I can’t help but remember our family doctor’s responses to Hyperlad. At age 2 and again at age 3, he told us that nothing was wrong. Since then I’ve had other health and educational professionals refuse to use the word autism for him and Monkeygal even while staring its obviousness right in the face. I’ve come to realize that perhaps a generation gap is involved. The thing is, some people think that a label is the worst thing a child can have. They are trying to be kind by denying the label. Or they are trying to be encouraging.

I don’t need encouragement. I need the truth. I don’t need pacification, I need help.

If I had gotten the diagnosis 7 years ago when I first brought up our problems, Hyperlad could have gotten help instead of punishment throughout kindergarten. And having autism on my radar, I probably would have recognized Monkeygal’s condition much earlier, rather than wondering if she was mentally ill. She could have gotten a 504 plan or an IEP in kindergarten, instead of constant suspensions.

I’m not saying any of this, though, to beat a dead horse. I know it’s too late to go back in time and re-do things. But I want to tell those of you who may be wondering about your own children, find out. The earlier the better. And I want to say to doctors and therapists, you don’t do any child any favors by patronizing the parents and offering platitudes. Parents don’t need platitudes. They need truth. Your patient’s parents know him better than you do. And if a parent brings up a real concern (not like “Johnny is already 7 months old and hasn’t taken a single step!” but more like “Johnny is 2 and doesn’t talk, and resists learning to talk,” LISTEN. Ask questions.

Providers, here are some questions you can — and should — ask when your patient’s parent brings up developmental concerns:

  • Does he have any behavioral issues?
  • Does he have a problem with certain foods or textures?
  • What is a typical day like for him? For you?
  • What can he do?
  • What can’t he do?

If you brush Mom off, she is not going to elaborate on Johnny’s need to break wood for the sensory stimulation it provides. She’s not going to tell you that he wasted $250 worth of food staples in the past month. She won’t bother trying to bring up that she cries almost every day because she can’t go to the bathroom without him running into the street half dressed, and the police have threatened to call CPS. She won’t mention any of this because she’s already figured out that you aren’t listening.

If you listen, however, things will go very differently. Even if you don’t yet know what is wrong, she will know that you and she are acting as partners to ensure that Johnny gets the best care possible and has his needs met. If you ask encouraging questions to get her to tell you more, and you learn that Johnny really is doing all right, you can tell her so and put her mind at ease. Or you might get her talking and realize that there is more that she didn’t even think on her own to tell you. She may be too frazzled to formulate a carefully thought out presentation, and you may have to draw it out of her. The important thing is listen. It may make the well-child appointment take an extra 5 minutes, but it could save her years of frustration. It could help Johnny to get what he needs, and not come to self-identify as a bad kid.

You may think that labels harm, and that may have been the truth at one time. It is far less true than when you and I were children, though. Thanks to laws like IDEA, kids with disabilities have inherent rights and there is help available to them. Those rights and help only apply, though, to accurately diagnosed children. Without an accurate diagnosis, parents and school officials and counselors are often left in the dark, wondering what this or that behavior means and how to deal with it. Sometimes worse is that if parents and school officials know what they are dealing with, they are not allowed to deal with it appropriately. Example: when Monkeytot acts out, she gets suspended because her principal has no choice but to follow the district’s discipline matrix. With a diagnosis, any behavior that is directly caused by her autism can be dealt with in a more appropriate and useful way.  Lack of diagnosis doesn’t prevent labels, anyway. It just means the labels will be thought up by kids on the playground. Instead of “autistic” this patient risks being labeled as “dumb” or “psycho” or “weird.” Kids can be cruel. Adults can be, too, for that matter.

Besides, a label or lack of it doesn’t change any reality. If you refuse to label a child with autism, you have done nothing to change his behavior or his symptoms.  Just because you don’t call Johnny a “name” doesn’t make him stop breaking things, or cease to be afraid of strangers, or suddenly become more coordinated. In fact, the opposite: it prevents him from getting the help he needs to learn to control his symptoms, and thus prolongs them.

Another tip for providers: pay special attention to girls’ symptoms. If you don’t know about the differences between how autistic girls and autistic boys present, learn. Girls very often — perhaps more often than not — fly under the radar because they do not fit the stereotypes. A boy who is obsessed with technology fits, and his autism gets caught, while a girl who is obsessed with cats doesn’t fit the stereotype and just gets viewed as an eccentric with a strong love of animals. Girls are also much better at expressing affection and imitating social behaviors. Don’t fall into the hugely erroneous trap of thinking that autistic people don’t connect, and that this girl can’t be autistic because she connects. The fact is (and you should know this if you keep up on your reading) that autistic people do connect, but they often do so differently than neurotypical people, and girls do it far more effectively than boys, either on or off the spectrum.

So, what do you do if a parent has concerns, beyond listening? In most cases, you probably refer. But pay special attention to this point. Referring to a behavioral pediatrician is useless. Don’t do it. Likewise to some other non-psychiatric or non-neurological expert. Autism is a neuro-psychological disorder, and requires a specialist for diagnosis. Refer your patient to a person who does neuro-psychological evaluations for autism. If you don’t have any names, it is a good idea to hunt down specialists whose names and contact information you can keep on hand. At least, if this is not possible, refer them to a psychologist, psychiatrist, or counselor who might have resources you don’t have.  Remember that you probably know far more about this than the parent does. If you don’t, you should. You should be the one who knows where they need to go — and they shouldn’t have to beg. And if it is someone outside your provider group, live with it. Some things are more important than keeping it in-house.

Whatever you do, the one thing you should never do when a parent suggests either autism or symptoms that could be spectrum-related is brush them off. The earlier an autistic child gets diagnosed and treated, the more successful he is likely to be. Please, don’t be the one to stand in the way of this little person’s success.


May the still, small voice of the Lord be with you.

Posted By on October 29, 2013

And he said, “Go forth, and stand upon the mount before the LORD.” And behold, the LORD passed by, and a great and strong wind rent the mountains, and broke in pieces the rocks before the LORD, but the LORD was not in the wind; and after the wind an earthquake, but the LORD was not in the earthquake; and after the earthquake a fire, but the LORD was not in the fire; and after the fire a still small voice. 1 Kings 19: 11-12

 Peace I leave with you; my peace I give to you; not as the world gives do I give to you. Let not your hearts be troubled, neither let them be afraid. John 14:27


I think one of the hardest things many Christians go through is the feeling that God is talking to everyone else. We read the saints, we read the Bible, and they hear God speaking to them; or they see  God in a burning bush. Most of us don’t really want to trade places with Moses, but it would be kind of nice if we had some of the assurance he must have gotten from such an obvious, visible sign. But He seems to save the big signs for people who have to be really, really sure that it is God calling them to lead a nation out of slavery or something.

Me? You? We’re just His ordinary followers. He calls; oh, how He calls. But the details of our vocations sometimes seem absent.

You want me to do what? Ok, fine. Just tell me how.


Lord, You led me here. Now what?


Father, I think maybe you are calling me to do a really scary, big thing. How can I be sure it’s you?



Discernment is a really hard thing sometimes.

When we really do want His answers, or His instruction, or maybe even just His consolation, sometimes we reach up and understand how Jesus must have felt when He said “Father, why have you forsaken me?” We know He hasn’t, but sometimes it’s an act of faith just to remember that.

But what if He really is speaking to me, and I just haven’t learned to listen?  What if, when He uses actual words, that is His equivalent of baby talk, and He wants to communicate with us in a deeper way?

I have come, in recent times, to believe that “peace” and that “still small voice” may actually be the same thing. Sometimes, the “voice” that speaks to me isn’t a voice at all, in the sense that I think of it, but a peace that settles in my gut and I just know. It isn’t as shocking, and it doesn’t cause goose bumps. It doesn’t have that exciting feeling of a miracle. On the other hand, for me to have peace may well be a miracle.

I think this started to sink in with me about a year and a half ago. I went to a CCD meeting, and I was trying to discern if God wanted me to volunteer to teach a class. I didn’t really want to make that commitment, but I was willing if that was what God wanted. I prayed about it, and didn’t hear any answer. The meeting was about to start, and I still didn’t know. So I said “God, you’ll let me know.” Then, I let go.

At the end of the meeting, when they asked for volunteers, I knew. I realized that I’d known for at least a half hour. I was at peace. God’s voice had settled not my brain but my nerves. His voice was peace.

I still forget to trust in peace. I still ask for signs, and I sometimes get them. I still listen for an earthquake or a fire, and sometimes God really does shout. But usually, He waits patiently until I stop listening for a boom and start listening for stillness. And when I do, sometimes I realize that God answered me a long time ago, and I just didn’t hear Him over the loudspeaker I was listening for.

Culture of Death Hits the Autism Community

Posted By on October 14, 2013

For those who haven’t heard about it, I’m talking about the Issy Stapleton case. It seems like everyone has a response, and here’s mine. The situation, in a very abbreviated nutshell, is this: Kelli, the mom, got hit with the refusal of her daughter Issy’s  school to provide services to Issy after she exited a treatment center for Autism. Presumably despondent, mom attempted murder-suicide by carbon monoxide poisoning. Both survived but with serious effects.

First,  let me share some of the other responses I’ve seen.

Very little response has come from the mainstream media, aside mostly from local venues.  Some have attempted neutrality, some have come out in favor of the poor, victimized mother who didn’t get the support she needed. The blogosphere has been more active. Autistic Self Advocacy Network, not surprisingly, has been less supportive of  the woman accused of trying to kill her disabled daughter. Of course, their views rarely get referenced by those who believe it is better for others to speak for the autistic than for the autistic to speak for themselves. Speaking of which, I can’t help noticing that Autism Speaks opens its mouth but doesn’t say much. They don’t come out in support of the mother, but they only address the issue of resources, lending an implicit implication that the mother’s lack of support really was the cause of this tragedy.

Which leads me to what really angers me about this situation.

It is our job to advocate for the disabled. It is my job as a parent. It is Kelli’s job as a parent. It is the school’s job. It is Autism Speak’s job. It is not our place to get rid of them or view them as a family burden or an educational/financial burden. It is our job to take care of them. Period. And if Kelli, or Autism Speaks, or the principal of Issy’s school does not want to do that, then they should step aside.  Walk away. Don’t get in the way of this child getting the care — not disposal– she needs.

You see, I understand about the lack of resources. I am going to say here some things I”m not “supposed” to say, but I know them to be true and I’m tired of bureaucratic doublespeak. I have an autistic daughter that I can’t get sufficient resources for. I’ve been trying for years to get diagnoses for her and her brother, but with no cooperation from the medical community up until very recently. I am very fortunate that the school staff understand, but they do not have the authority to diagnose, and their hands are somewhat tied in terms of what accommodations they can make without a diagnosis.

First, I took my son (age 1 1/2) to the doctor. I told him what a difficult time my son was having, and was given some mild encouragement of the generic sort. At age 2, he went again and I told the doctor that his language development wasn’t right. He didn’t put two words together until the day before his second birthday, and that is not normal. Especially for a child who is very obviously extremely intelligent in other ways, and in a very verbal household. My doctor said “That’s perfectly normal. It’s just because he’s a boy.”

By age 3, all heck had broken loose. Our very obviously hyperactive son was breaking hundreds of dollars worth of things every single week. He was playing in food and cleaning chemicals on the floor. The final straw was when we woke at 6 AM to find that he’d broken the childproof latch and taken out the bleach. He’d removed the childproof cap and poured it out. He was sitting in a puddle of it on the kitchen floor. A very hasty bath, and he was unharmed, thank goodness. But we knew that we could not ensure his safety with traditional means. We tried a crib tent, invented for autistic children. He tore through it in three days. We tried barricades, tougher latches, locking cabinets, anything we could think of. Not a single one lasted more than a week before he broke it. He tore hinges and deadbolts out of walls. He tore DOORS off their hinges. Yes, plural. Several of them. He broke two cribs, two toddler beds, one dresser, three doors, two recliners, a rocker, three windows, and six dining chairs. Well that’s what I can think of off the top of my head. The doctor said he was normal. Others said I just didn’t supervise him closely enough. (Evidently I was supposed to lock myself and my younger child in the room with him while he napped.)

FINALLY I learned about Birth to Three. I called them and they set up an evaluation. My son tested as delayed in every category they tested. Language, comprehension, social skills, large motor, fine motor, etc.  It had taken two years of trying to convince people that something was wrong and we needed help. But people don’t like to give a “name” to things, because they think it will scar the child. It never occurs to them that you need a diagnosis to get services. Insurance doesn’t cover therapy because Mommy is dissatisfied with Billy’s progress.

At his 3-year appointment, I unloaded on the doctor and he finally gave me a referral to someone I was told was an expert. It turned out he was a pediatrician. He spent five minutes with my son, and told me that he had ADHD but otherwise was fine. “He speaks with intonation,” he said. “Autistic kids don’t.” He had stopped listening by the time I responded that every single thing my son had said had been a direct quote from Caillou, his favorite tv show, complete with intonation copying.  He had memorized episodes.

But at least he had developmental preschool. They were helping. A lot.

By the time he began kindergarten, it was quite clear that my son was on the spectrum. He toe-walked and hand-flapped. He quoted entire infomercials. He spoke robotically, in very precise language. He understood everything entirely literally, and people frequently thought he was joking when he responded in kind. He was in trouble daily at school, for his hyperactivity and “disrespect.” He corrected everyone, constantly. His favorite sentences always started with “actually,…”

Let me point out that if I had been told about Birth to Three when I brought my son in at 2 for his well child exam, he could have received help a year earlier. He might have had a good kindergarten year. If I had been told that the pediatrician we were referred to wasn’t qualified to diagnose autism, I could have saved myself three hours of driving and sought someone who was. If the doctor had been allowed to refer to a professional outside his network, we could have had a diagnosis at age 2, instead of trying to get one at age 9. We could have gotten an 504 plan or an IEP from kindergarten on, instead of having him get disciplined every time he acted autistic or hyperactive.

Now let me back up three years. When Son was 2, Daughter was born. She was going to be the “easy” one. Or so we thought. By age 9 months, her stranger anxiety was so extreme that if exposed to anyone who did not live in our household she would scream in terror. Even family members. I thought it was a phase. By the time she started kindergarten, I realized there was something off, but I did not know what. Autism did not occur to me because she wasn’t “nerdy” like her brother. She obsessed about cats, not keys. She was an early talker, and never, ever, ever stopped. She talked loudly, as though she had no concept of volume control. She didn’t walk on her toes, or flap her arms. But oh, she got into things. No egg was safe. She loved the feel of flour sifting through her fingers on the floor, or eggs sliding on the linoleum. Or a wet Pull Up. Yes, she was still incontinent at age 5. She barely learned to control it during the day in time to start school, and constantly asked why she had to bother. She didn’t feel like using the toilet; it wasn’t that she was unable.

We got her into therapy, because we had to know what was wrong. She was diagnosed with anxiety and ADHD. Right around that time I happened upon an article about girls and aspergers. I learned how it looks different on girls than it does on boys. And they described what a typical aspie girl might look like. It was a behavioral photograph of my daughter, except that my daughter had more intense emotional disturbances.

I took that suggestion to her therapist, who poo-pooed it. Every time we brought up a behavior, she said “That’s perfectly normal. She’s just very creative.” She had been suspended from school six times, but the therapist also thought that was normal.

Finally we got a piece of good news. A therapist who dealt with children had joined the local medical group. We transferred Daughter’s therapy to the local lady, and she saw what was happening. She was bothered by Daughter’s 9th, then 10th, then 13th suspensions. She referred us to someone outside her medical group who could do autism evaluations. She referred both of the two. (By this time she was seeing Son, too, after he’d gotten an emergency expulsion because of OCD related intrusive thoughts.)

Which leads us to the present.

Now, there are several points I think it necessary to ponder.

  1. So much of this could have been avoided if our doctor had taken my concerns seriously.
  2. So much of this could have been avoided if our doctor had referred us to someone qualified to give an evaluation.
  3. So much of this could have been avoided if our doctor had had a list of resources for worried parents.
  4. I assure you that while I can’t claim to have walked in Kelli Stapleton’s shoes, I do know what it is to have overwhelming challenges and no community backup.
  5. I never tried to kill my children. I never tried to harm them. I never did anything other than love them, do my best to protect them and meet their needs, and occasionally escape for respite.

And that fifth point is the really important one. The more I fight for the kids, the more I LOVE them. I am their advocate, not their adversary. Even when they are really rough on me. And if I ever reached the point where I simply couldn’t do it anymore, I would find someone who could, rather than harm them. And I would keep looking for resources until I found them, no matter how long it took. Which is what I’ve been doing.

For those who defend Kelli Stapleton, I ask you this: do you really believe it’s understandable to try to kill someone you were put on this earth to protect? Because I can tell you, it is not. I can’t understand it, and I cannot defend it. No. Matter. What.

And that’s because I do not buy what the culture of death is selling. Healthy children are not worth more than unhealthy children. Easy children are not more valuable than difficult children. Many of the greatest molders of society have started out as very difficult children. But we’ve been sold a bill of goods, a lie that tells us that children with problems should be exterminated before they have a chance to become an inconvenience. We’ve been told, even, that it’s for their own good.

But out of all the groups I mentioned above, who had talked about the Stapleton case, the one group who didn’t think it was for Issy’s own good was the Autistic Self Advocacy Network. It isn’t autistic people who are saying autistic kids are better off dead.  If autistic people can see the value of all people, but society’s political thinkers can’t, then it kind of begs the question: who is really the superior person?