I am hot...

it just comes in flashes.

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.

balsamicsalad

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.)

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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!

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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.

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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.

Silence.

Lord, You led me here. Now what?

Silence.

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

Silence.

 

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?

Arguing with ghosts

Posted By on October 11, 2013

There are times when you have a conversation that sticks with you for months, even years. When you know you will spend countless hours stewing over what was said, what was not said, and what should have been said.  A year and a half ago I had such a conversation with a woman who said that keeping a clean house is easy.  “I’m a single mother,” she said, “and I work full time. If I can do it, you certainly can.”

Translation: Nobody is home during the day making messes, and I have every other weekend to myself to clean, while my one healthy child makes his messes at his dad’s house. And I can afford occasional shortcuts and even a working vacuum cleaner.

For a year and a half, I have wished I could go back and say all the things I might have said. “How long does it take your kiddo to invent a 7 ingredient recipe on the kitchen floor? Can he do it in the time it takes to go to the bathroom?”

Or “Your hair is so pretty. It looks like you wash it regularly. Is it safe to leave your son unattended that long? Aren’t you worried he’ll break the lock on the cleaning cupboard and drink the bathroom cleaner?”

Or how about  “You have time to work? It must be wonderful! But how do you fit it around 4 hours a week of meetings and appointments, 2 hours a week of medical, school, and government paperwork, 20 hours a week of washing poop out of clothes, and hugging a distraught child through 10 hours a week of meltdowns?  Where on earth do you find time to maintain your relationship with poison control?

How do you manage to keep working appliances when your repair budget all goes toward replacing food that the children painted with or fed to the ants out front? Or urinated in?

And even if you have the time and money for all that, how do you manage it all while exhausted to the point of breaking down by constant emotional stress and an auto-immune disease?

Oh, wait.  I guess you don’t deal with any of these things. Maybe you don’t know, after all, how easy it is to raise my children. For your sake, I am glad that you don’t have these struggles. But please do not presume to know what it is to walk in my shoes.

It would be less frustrating if this woman had been the only one. Alas, she isn’t even close.

Ok, I’ve gotten it off my chest now. I’m tired: I should go load the dishwasher again and give my daughter her meds.

Peace

Posted By on June 7, 2013

Peace.

What peace?

Peace be with you.

Easier said than done. I can’t seem to make peace happen.

Peace is my gift to you.

I have no peace! I have no quiet! I have no rest! And trouble keeps coming.

One handful of peace and quiet is better than two handfuls of hard work and of trying to catch the wind.

That’s what I keep saying. I pray for peace all the time.

We hear cries of fear, cries of panic. Not cries of peace.

You know, Lord, that this is not a peaceful world. Where is this peace you keep talking about?

I’m leaving you my peace. I’m giving you my peace. I don’t give the kind of peace that the world gives. So don’t be troubled or cowardly.

So now I’m a coward if I’m troubled? Given the way things are, I’d be a fool to be at peace. Heroes cry in the street. Messengers for peace cry bitterly.

I will bring peace to your land. You will lie down with no one to scare you.

I am for peace; but when I speak, they are for war.

Blessed are those who make peace. They will be called God’s children.

First you say you give me peace, then you say make peace. How can it be both?

Make peace with God.

I’d like to. I long to. But it is so hard when the world seems out to get me.

Oppressed people will inherit the land and will enjoy unlimited peace.

Lord, you keep talking about peace. You make it sound important, for you seem to push for it constantly. Why?

Be in harmony and at peace with God.In this way you will have prosperity.

Maybe I’ve been looking at it the wrong way. I’ve been treating peace like a sacrifice you want me to make for you, but…

The mountains may move and the hills may shake, but my kindness will never depart from you. My promise of peace will never change.

Be at peace again, my soul, because the Lord has been good to you.

Your faith has saved you. Go in peace.

The Adventures of My Belly Button…

Posted By on June 2, 2013

… or please forgive me if I engage in navel gazing.

I’ve been fairly quiet lately, and have probably bored away those few who followed Carmel Sundae. I would apologize for that, except that it may have been a favor, since I’m not sure I was accomplishing anything in the last year or two, anyway. But, unwilling to give up the blog, around the time of renewing my domain, I realized it was time to do some thinking and evaluating of what this space is meant to be. And I’ve come up with an answer: I’m not sure.

Kind of like my life.

Things I am sure of: I love my family. My husband is the most wonderful and supportive man in the world. My children are a delight and a genuinely full time interest. My vocation as a Carmelite Secular? God has made it clear to me that He wants me there; but there hasn’t been time to pursue it in the ways I’d expected, and I don’t “feel” like much of a Carmelite lately. Certainly not enough to wax brilliant on the subject. Maybe there’s my problem in a nutshell: my wish to wax brilliant, when what would be more useful and infinitely more honest would be to wax overwhelmed and occasionally confused.

The fact is that my life is never what I would have planned or expected. I planned a peaceful and proud life of raising easy, strong, impressive, and brilliant kids. The reality? Proud, yes; peaceful, no. Strong, impressive, and brilliant, yes; easy, NO. I never expected to have a house full of Autism, ADHD, auto-immune, depression, bipolar, anxiety disorders, developmental delays, Tourette’s, and OCD. I planned a career of teaching, not of answering the phone constantly when the school calls about my kids.

You know what they say about if you want to make God laugh. Make plans.

God made plans, and is probably laughing at my own simplistic plans that went in other directions. Truth be told, I am kind of honored that God put so much on my plate. I’m beginning to realize that just because I got a teaching credential doesn’t mean He intended me to teach (at least for now) in a public school. Just because He called me to be a Carmelite doesn’t mean He necessarily intended for my vocation to be about meetings. He gave me this oh-so-complicated life, and His gifts are to be treasured, even if we don’t understand them.

As I come to understand His will for my life, which includes parenting a noisy, sometimes disabled tribe maybe what He wants for this blog isn’t for me to share esoteric wisdom so much as to share my challenges so others may know they are not alone… and in the process I may find that I’m not alone either.

So please forgive me if I spend some time reaching into a grab bag trying to rediscover what my Carmel Sundae looks like. Please forgive me if it involves some self-examination, and yes, navel gazing.

And please do feel free to offer a prayer for me to know and do God’s will.