Ten Years Ago

Ten years ago, I was a brand-new mom of a beautiful, squishy, soft baby boy. When I first touched his cheek, it was so soft, it was like touching nothing at all. My Joey came into the world via emergency c-section, precisely at 8pm. And who could not love that beautiful, smoochy Buddha Buddy?

It's hard to imagine loving someone more than the moment my Joey came into the world. Until the next moment came, and we all loved him even more. Then the next moment came, and we loved him even more...

If you have never had a newborn in your arms and sniffed that newborn baby head, you cannot possibly imagine the true meaning of the universe; until you smooch that baby head, you cannot imagine the totality of existence. There is nothing more life-changing than the real understanding that life is more than just you. That the cosmos is bigger than just you. Not just know it. Understand it.

I had no idea how much I would learn from my Joey. If I had known, I would have had him years sooner. And he would have a lot more siblings.

When Joey was born, my mom said I would be amazed how fast the time would go. She's right. I'm staggered. Time slips through our lives with no turning back, and the best you can do is hug your dear ones tight and enjoy the ride. Fortunately, Joey still loves to be hugged. And smooched. And squished really, really good.

Happy Birthday, Buddha Buddy. You are my Joey-Boy, forever and ever.

The Big 1-0 tomorrow!

Am I ready for Joey's birthday?



Why, yes. Yes I am.

Being Aware: What Does Autism Look Like?

With autism awareness month upon us, one of the questions I often get from those not familiar yet with autism is, what does autism look like? There are several different reasons for asking. Some folks want a list of thing to "look for" in their own family and friends, for a sort of self-diagnosisof things they see. This is a difficult reason to answer, because autism does not manifest in one single way; every autistic person is unique, just like the rest of us.

Also, when I start making that list, I am often interrupted by comments such as "well, I do that, and I'm normal! (or not autistic!)" because so many of the red flags are not a matter of doing or not doing, but a matter of degree. I wind up in the discussion of the difference between a tantrum and a meltdown. It is hard to explain to someone who has never seen one or the other. Where does one draw the line between "very focused" and "hype-focused"? Sometimes it is not so obvious. And some people are just not very bright, and trying to tease the knife edge between them is useless. Sometime you just have to say, "yes, I know you really like cats, but it doesn't get in the way of you doing other things, like eating." Which isn't the boundary at all, but at least they get the idea.

Then there are people who ask this question because they want to look at random strangers and diagnose them. After all, with many disabilities, you can see the person is disabled. They have visible differences- wheelchairs, for instance. Or distinctive facial features. Also, I get a lot of comments about how Joey doesn't look disabled- especially when I pull into the handicapped parking spot and get out our hangtag.

Autism is an invisible disability. You can't look at someone and say, "oh, s/he must be autistic!" You need other cues. That is something to keep in mind as you walk around in the wide world- just because that person doesn't look disabled, doesn't mean they might not have special needs. Be prepared to meet them so they can join in the working of the world. After all, you want your special needs met, right? In fact, people who don't meet them often get labeled very quickly in your mind as a person to steer clear from, right?

Anyone you meet might or might not be autistic. Autism occurs in people with or without other disabilities. Because autism is a pervasive neurological disorder, other disabilities can be bundled into the issues. Or not. Consequently, autism looks different for everyone- as uniquely as you and I look from each other. Autism is a diagnostic label related to certain behaviors and deficits; it may not even be a single condition or state, but a variety of pervasive issues that have similar results. Social connection/social skill difficulties, communication disorders, issues of movement. Neurology is pervasive in our bodies, so anything inside or out might be affected- sensory systems, digestive systems, respiratory systems, endocrine systems... I could go on.

So there is no one way autism "looks". I can only tell you what it looks like for us. And for us, JOey is the ultimate face of autism; autism is intrinsic to who Joey is and how he experiences the world. Watching him, listening to him, accepting him helps us to have new eyes and see from new angles, to understand the world from a point of view we could never have imagined without him.

What does autism look like? It looks like birthday parties and video games and days at the beach. It looks like grins and giggles and sparkly blue eyes. It looks like round rosy cheeks and running around the bases. It looks like homework and balloons and tricycles. It looks like a boy, growing up fast.

To us, autism is a roller-coaster, much like raising any other child, with the difference of the extremes. You notice the difference when you see Joey next to his peers; the things they do oh-so-easily (such as, say, talking and walking), are not as easy and free with Joey. But when you just have him, can you see it?

Well, can you?

Friday: Hi, Ryan!

It was a very long day

And you know it is going to be, when the OT comes out and cheerfully informs the parents that today's session was about "dealing with disappointment!" And then, just as cheerfully, tells you that they had an egg hunt, but when the kids opened the eggs, they were full of stuff like paper clips and crumpled paper, and the kids then had to practice saying something nice about the object.

Yeah, I know why this is done in a social skills group, and the point, and all that. I can pull apart the layers of it like an onion, and go on for several blog posts about how great this exercise is supposed to be in teaching this lesson and that lesson. Blah, blah, blah. But for us, what it meant was I was heading straight into Hell.

See, Joey managed to hold it together for the therapists and his friends, but once we got in that car, it all broke loose. Yes, I know its because he trusts us and was tired and think about how difficult the OT was and blah blah blah. That isn't going to take the bruise off my arm or the tooth prints- his own- off his, thanks. And Person at McDonald's Who Forgot To Leave Off The Ketchup, Mustard, Onions and Pickles From Our Sandwich? Yeah, a big thanks for nothing to you, too. Oh, and that regular coke you gave me? You could have killed me. But that's for another blog post.

We didn't quiet down until i gave him the pom-poms to shake at Andy's soccer game. But don't worry. We fired right back up when we hit the car, even after being so very happy to see some neighbors Joey adores and running around with them for a few minutes.

Yeah. Long day, packed into the four hours we have after the school bus drops him at my door.

Then I read about Daniel Corby. The idea that it would "unjust to let him continue living" makes me want to run screaming into the night. Unjust to allow another person to continue to live? Why?

Oh, right. Because this four-year-old was autistic. {*insert ugly word of choice here*}

I selected the particular article to link to about it because when I linked, there were no comments yet. And I didn't want there to be comments, because when you go to ones with comments, you run screaming into the night to jump off a cliff. I don't care what resources you do or don't have, what culture you are part of, or what society thinks of you. There is no justification for taking another innocent human life. To take a life that is trusting you to protect it? What, you think disability is worse than death?

It is shocking how many people do. And not only do they think it is worse than death, they think and firmly believe that people with disabilities are less than human, and deserve death. That people with disabilities have no rights, no feelings, no skills, no purpose, no value. They are less than objects, less than dirt. Some people are more subtle about it than others, but the feeling rises to the surface in ugliness that is so insidious and horrible that it is hard to know what to say or how to fight against it. Our culture, our language has difficulty communicating counter-concepts in a way that makes it clear how wrong and ugly and evil such ideas are, and yet how ingrained they have become. What would I have thought before I had Joey in my life? Sometimes I find it a terrifying thought.

Another exhausting vein of comment is people who complain that people with "high functioning" loved ones have no clue what it is like to have "low functioning" loved ones. I have news for them. The problems are different. Am I lucky to have a child who can speak? Yes. Even when he is screaming at me, "I hate you! You hate me! Just kill me now!" and beating on my arm so hard I worry that come day he might break it? Yeah- different problems. But dismissing my point of view in discussing the murder of a child just because he is autistic, simply because my child is "higher functioning" that yours? That is low. Very. Low.

I've been fortunate in being able to spend more time this year in Joey's classroom, and volunteering for several of the special ed kindergartens this year. I've seen a good range of "functioning." I am still convinced that several students would be able to "function" better if they were given more understanding and people "listened" to them better, instead of imposing their own ideas and wants upon the kids. I have seen a range of problems, issues, challenges- and strengths, gifts, and hard work- but each of these kids, each of these families, is unique, meeting their challenges and lives with varying degrees of grace and success. Special needs means special efforts, no matter what the challenges or the strengths. Judging another family because their child is "more disabled" or "less disabled" is just another way of dismissing someone else's hard work and challenges. It is assuming you know more about that other person's life and experience than you do.

And none of those challenges justifies murdering a child. Period.

Happy World Autism Day!

Today, we are celebrating my Joey and all our autistic friends, and their wonderful ways of seeing the world and sharing it with us!

I think World Autism Day is a great idea. When I started this blog oh-so-long-ago, it was mostly because I didn't want other parents to feel as lost, confused, and afraid as we did when we discovered that all those quirks Joey had meant he was having trouble navigating the world. We had just learned one of many important lessons in our lives: that autism and disability aren't scary. Joey is who he is, and we love him no matter what labels are used to describe him. In other words, there might be reason to get prepared, to be concerned, to think and research and collaborate... but there was nothing to fear.

Far too many parents are left to make decisions in the face of the fear of the unknown. They are handed a diagnosis, smacked with the idea that their child has more challenges before him or her than those parents might have expected, and no information for how to deal with the news, or to help their child.

We are also on the brink of another challenge: discussing with Joey what autism is, and what it means. Although we don't hide Joey's autism- not even from him- that doesn't necessarily means he understands it. At the end of our IEP meeting today (how's THAT for celebrating World Autism Day?) we were already started to discuss strategies for middle school. We have a year to prepare. Getting Joey to understand himself so he can be better prepared to self-advocate and help us help him is part of that important transition process to the world of middle school (a world that presents special challenges to everyone, autistic or otherwise).

One of the ways we prepare is to read about our friends who have older children, who are themselves going through these transitions and changes, and sharing parenting experiences with other parents. We coming into a moment where it may be useful for Joey to form his own understanding of himself and the part autism plays in who he is, possibly through connecting with other autistic people. We don't know how much of his self-identity will include autism, if any; but sharing experiences with others who have an inkling of how you think makes a huge difference- a lesson I remember from my own middle school and high school years.

So we are glad today to join in the celebration of our friends, our family, all those who understand or want to understand Joey and how he experiences the world. Without autism, Joey would not be Joey. We love Joey.

Ryan: Week 8

Another week of our good friend Ryan, joining our world for a little taste.

On/Off Switch: Anxiety's Funny Ways

We have been having some hard days. There are lots of changes going on in Joey's life, and change is not our friend. So honestly, when we had a dentist appointment on Monday that required me to pick him up from school, I wasn't surprised to hear he had a bad day. He had been anxious about the appointment when I put him on the bus. Specials (art) had been shaky. He bolted at lunch when there was some confusion about his lunch money account and was initially denied milk. Not just a run-to-safety bolt, a blind-panic bolt, made worse by folks who don't yet understand you have to block him and distract him with a person he trusts while you block the door, rather than chasing him (and scaring him more). He was clearly anxious as I got him to the car and went to get Andy; repeating comfort phrases and air-writing.

To make things even worse, we are not in our proper car; my van is being worked on, so we are in the small car. The good thing about the small car is that the back doors have child locks. The bad thing is that the windows do not.

On our way to the dentist, Joey insisted on putting his hands out the window. This may seem harmless, but it is very dangerous, and we were coming to a point in the ride where he could have gotten hurt- so I asked him to roll up his window.

Silly me.

The world instantly stopped turning, swirled through space, and crashed on Route 1. Screaming ensued. I tried to reach back and roll the window up myself, to have my hand slammed against the crank by his knee. Ouch. I had to pull over to try, as the light turned green, and was greeted with more screaming and now he was hitting my arm while slamming my hand with his knee. I got the window up. He instantly rolled it back down. We had three rounds of this. Explaining the danger? Useless. Offering token reward? Useless. Raising my voice? Oh, totally wrong. Total meltdown. But the window was now up, and he was still in his seatbelt, so I got the car back in drive and made it on time for our dentist appointment.

Joey stomped in before me, and announced to all and sundry that his mother did not respect him anymore, and he hated her. Also, that his mother should stop hitting him, because it was mean. I sat down with Andy and managed not to cry.

Then, out popped Joey's favorite hygienist. It is a huge credit to the staff at our dentist office that everyone was being just as sweet as could be, and taking the whole situation very lightly. They are kind of used to Joey. But there was positive giggling when this lady popped out with a cheerful, "Joey Guyton! It's your turn!" and it was like a switch had been flipped.

Joey grinned. He stopped yelling and stomping. He said, "Hello! How are you? I am fine! I am happy to see you!" and went on back to get his teeth cleaned as if it were a much-anticipated treat, calm and smiley as you please. He emerged half an hour later with a big smile and very clean teeth, as if nothing had ever been amiss.

Some days, there is nothing to fear but fear itself.

Ryan Hunts My Bolter

Yeah. It's been one of those days. And I think I'm out of wine.

Need some laughter? Go see what else Ryan Gosling is up to in the special needs world by checking out Sunday's Ryan Gosling Week 7.

A Peanut Butter Sandwich

A miracle has occurred at my house. Not a big, holy hannah there is a saint living here kind a miracle. No... one of those small, beautiful little miracles that really reminds you that every minute is a miracle, and you should celebrate each one by hugs and smooches. You know, the kind that really matter.

I was grading exams, when Joey comes into the den with a big grin on his face and what appears to be a sandwich in his hand. With the pride of a boy who has just conquered the known universe, he announces, "Mommy! I made a peanut butter sandwich!" His first peanut butter sandwich, all by himself, start to finish. Then he took a big, beautiful bite. Then he let me take a picture.

In case you don't see the miracle in this, let me outline what it means to make a sandwich:

1. Sequencing. Take out the bread, get out the peanut butter, spread the peanut butter, put the sandwich together, put away the peanut butter and close up the bread. I could get into finer steps of the sequencing required, but you get the point. Sequencing is something we always have trouble with here. Yes, he can turn the key and get out the door no problem, but doing something like making a sandwich? Way too many steps... until now.

2. Hand control. Ever watch a little kid try to spread peanut butter? The bread is usually unrecognizable by the end, or you have this very large lump of peanut butter, or both. It takes a huge amount of control to spread anything with a knife, especially something as stiff as peanut butter from the fridge. Controlling the pressure exerted as you move the peanut butter across the bread is something you may not even think about, but was impossible for Joey... until now.

3. Bilateral coordination and crossing midline. Ever try to do that spreading with one hand? To make a peanut butter sandwich, you usually have to hold the bread with one hand and spread with the other. This requires coordination, and an ability to cross your midline while you hold that bread in place. Joey has limitations in his ability to cross midline, which results in poor bilateral coordination. Holding something in one hand and manipulating it with the other with any real accuracy is something he struggled with.. until now.

Now, he can make himself a peanut butter sandwich. That boy rocks.

Spring

Spring arrives with soft petal kisses
and steals our heart away

Positive Reinforcement

See more of Mr. Gosling supporting his special needs friends at Extreme Parenthood!

What Andy Sees

So we had our meeting with the vision folks. My best summation of our discoveries is, holy crap, no wonder he hates school. They keep telling him to do stuff he can't see!

To give you an approximation, from the experience I was presented at our meeting, I have created the image below. Now, this is a still image. Andy's eyes move, just as your probably do, as he tries to focus and re-focus. So on top of this shattered and doubling effect, image the image is constantly moving, slightly at the outside, downright swirmy-wormy in the center, and you'll get just a glimpse at how Andy sees his schoolwork, or that page you are trying to force him to read.



Got a headache? He gets them, a lot. And now we are very, very sure why. Vision therapy, here we come.

When Ignorance is Deadly

I know, you wanted a nice, happy post today. You ain't gettin' one. Sorry.

I've been following the information about George Hodgins, a 22-year-old man who was murdered by his mother last week. George Hodgins was autistic.

I have been struck by the comments that follow many of the news items. Not just the outpouring of sympathy for Elizabeth Hodgins, but the complete lack of sympathy for George Hodgins. The blaming of "lack of service" and the call for family support may seem a natural reaction to many people- indeed, it must, as many of the comments steer in that direction; but is it really the appropriate reaction? What about talking about support for autistic people? For people in general? What about the support for the victim in this case? And folks, the victim is not George Hodgins' mother. The victim here was primarily GEORGE HODGINS.

When I see comments like, "well, all parents of kids with autism think about killing them," the magma rises before my eyes. I mean, seriously? Holy crap. I have never thought of killing Joey. Never. When such comments are followed up with "Any parent telling you differently is lying," I do think of violence. Not against my son.

But you know who I worry about first? No my Joey, who even now is gaining skills in self-advocacy, who is able to speak up in his own way. By the time he leaves school, I have solid grounds to hope he will be able to self-advocate effectively and live independently.

I think of Max and Charlie and Jack, the boys of my best friend who cannot speak for themselves. I am convinced that there is more going on in those heads than anyone gives those boys credit for, and primarily because they cannot speak. They are boys who are severely disabled. They may never work jobs, they may never talk; but does that mean they have no value? Sadly, to many people, they believe these boys have no value. Of course, they have also never met Max, Charlie, or Jack, or anyone like them- or if they have, they dismissed those people out-of-hand, instead of taking the time and effort to know them and let them work the magic of changing their lives and creating the understanding that is their value, the way they give back to our society- with infectious smiles, personality, and a real understanding of what it means to be human.

Max, Charlie, and Jack are people. Just like you. Just like me. We may be vastly different in many, many, ways, but in this we are in common: we are all human. We are all people. These lives have intrinsic value in the miracle of existing. Until you meet them, with an understanding that they are people- reall, full-fledged, absolutely whole people- you cannot fully appreciate their value, because our society is so convinced that they have none. They spread that idea to the very base of our youth and experience. Shake it off.

I will not speak for my friend directly, but I strongly suspect she has never thought of murdering them, no matter how "high maintenance", "low functioning", or "easily irritated" her boys might be.

George Hodgins died because his mother valued his life so little, saw it only through the desperation of not giving him full value of being a person. He had been out of his program for around three months, and the program had adult service available. This is not a story of lack of services. This is a story of a young man whose life was cut short, and stolen from him. No excuse, no justification, nothing that we can design or imagine to justify her action in killing her son can change this fact, that she chose to murder another human being, a life of value, and rob us all of that life, and rob George Hodgins of his life. He was a loved, cherished young man, with friends and family who loved him and valued him, he was a young man who loved and cherished and thought and breathed and lived, and now he is gone.

Autism is not happening to me. Yes, my life is not what I planned, and I gave up certain paths and dreams to help Joey and to help Andy in ways that people with typical children simply cannot fathom. I have a different life, different plans, different dreams. Seriously, what life goes as planned? And though I think about the lack of services and supports, the problem is not that there is lack of services and supports for me, there is a lack of these things for Joey. I want his life to be as happy and fulfilling and joyful as it can be, with the opportunities to enjoy living that other people have. I'm a parent, after all. I might have to fight harder for it, and get less sleep along the way, and maybe my working life isn't typical, but that's life. I have never thought of stealing it from Joey. To insist I have is a really stupid thing to say- a hateful thing to say.

I wish there was some way to get through thick skulls that this news is terribly painful, and it is painful enough without people saying stupid, hateful things. We have a family out in California in pain. They have lost two family members in a sudden and senseless way. Two people are gone, for really no reason at all. IF you want to make it a discussion, let's talk about the issues of services for disabled people, for support of people with disabilities, and the idea of valuing them as human beings, and the sad fact that all too often, society dismisses people with disabilities as being not-people, or half-people, instead of just people. Let's be working to change that, so fewer people like George Hodgins will have their lives stolen from them.

Life With Andy

So in the swirl of life, special needs, IEPs, and spring springing boing boing boing, we are discovering that among Andy's issues, the child can't see. His eyes do not converge to focus. We'll get to see what it looks like Monday (there is some confusion about whether it is THIS Monday or NEXT Monday, but it's coming), but in the meantime, its been explained to us that he basically can't see anything in a strip about 12 inches wide, six inches to either side of the middle. You know, where you would look to do things like read. Or write. Or, well, anything in front of you. He can't focus there.

We have no idea how he has trained himself to cope with this issue, but he has. After all, it is the way he has always seen, and people expected him to be able to read and write. So he learned to do it. As far as we can figure, he uses a lot of peripheral vision and approximating based on the blurry mess that is in front of him. No wonder he gets so frustrated with reading an writing, though! Apparently, he has gotten through so well because he is a clever little fellow.

The answer will be vision therapy, which will basically reprogram his brain and his eyes so that they work together and converge properly. After that, he will need to be completely retaught to read and write. The good news is that his frustration level will go down, so we should see some alleviation of attention deficits- then he can channel all his awesome energy levels into relearning these skills, and getting back to speed at school.

We now have his IEP in place. It was a little odd putting together the powerpoint, because it looked eerily like the one we made for kindergarden, when we were told all these issues did not require an IEP. Same issues. Just two years later, with a new label- "dysgraphia." You know, if they had listened to me two years ago, and looked into this properly, we wouldn't be needing services now. But that's now water escaped under the bridge, I can't take it back. Here we begin.

Long Term Plans

I posted my Goslin meme early, because I didn't think I'd be around my computer with my brain on straight long enough to post it on time. Then I got smacked in the face with yet another report of despair dragging a defenseless autistic young man to his death at the hands of his primary care giver: his mother. It is the kind of story, the way it is being currently presented, that makes me cringe.

There are certain details that make me downright red in the face. The young man had been in a day program with an adult component, and the mother pulled him from it 2-3 months ago. Why? And when she had trouble getting him into another program, why didn't she contact the old center? We need more information there. Why was he pulled without having another place to go set up? That's about as wise as quitting your job without another lined up when you live paycheck-to-paycheck, then wondering why you can't pay your rent. Was there a problem at the center? Had she tried to get him in the adult service and been denied? What happened there? It doesn't make sense. Then to break down in only 2-3 months of care? There is something wrong there, too. I know lots of folks with severely disabled kids who do the day in-day out thing for years before they even start pulling their hair out. Again, not enough information. Was she completely unprepared for the responsibility and effort? Was his behavior particularly challenging? The descriptions of the young man do not suggest that, but we simply do not know. (And challenging behavior is still no reason to kill someone.)

And in the end, who has the right to pull out a gun and kill another human being, for any reason? Call me cold, but the whole murder-suicide thing? I'm not very sympathetic to the murderer. It is one thing to take yourself out- that is tragic enough, and serious enough. I have very definite thoughts about suicide, and I am with those who say people do not "commit suicide"; it is more appropriate to talk of someone being "lost to suicide." To take someone out with you? You are moving into a realm beyond any reason. Obviously, when you are in a state where you are suicidal, you are already not in a "typical" rational state. It is bad enough to lose someone to suicide. To lose your family to suicide and to murder at once? My brain goes scrambled-eggs just trying to wrap it around such a concept. You never have the right to kill anyone, unless they are about to kill you. And I mean directly. The whole thing makes no sense. We lost two people in this incident: a young man who was doing his best to live his life, and his mother, who decided to end both lives for reasons and purposes unknown to us.

But it is something that sets me thinking, as I watch Joey and think about his upcoming IEPs and his needs and progress and "current level of performance" etc etc etc. There is much talk about kids "aging out" at 21- but this is only if it is decided that the school is still supposed to be supporting your child with educational service after age 18. With kids like Joey, who are academically on grade level or beyond, it is a much harder fight to keep them in the educational system beyond the age of 18, when their typical peers are graduating. And either way, what happens to Joey after graduation, if he is not able to live independently (yet)?

Yeah, I haven't gotten much sleep lately. Thanks.

Most of my plans and counterplans and back-up plans consider this possibility. What if Joey cannot go out on his own yet? Or, since we have no clue what the future holds, ever? Am I ready for him to stay with us forever? We aren't talking about the kid who never gets it together to move out of mom and dad's basement (though that is also a possibility- for either child- you never know). I'm talking about the possibility of Joey needing extra support, and enough of it that putting him in his own apartment would not be a good option. What other options might be out there? Am I ready for him to stay here?

I don't know too many parents who have adult children or adult loved ones with need for support to the point that living independently is a limited option, or not one. I have a friend who started a group home for her adult daughter- she had the resources to do that, and it has worked out nicely. I have a colleague who surprised me one day when my Joey was first diagnosed by revealing they had an adult child with neuro-developmental disabilities living at home (and that their adult child brought much joy to the family! Thank you for sharing that part, too!) We have a neighbor with a younger adult child who has a job with a local company and still lives with them, and that seems to be working out well for them. Would it then be a disaster if Joey remained here with me?

Hello- no. I love Joey, I love being with my Joey, and we are very very very fortunate that 1. he is Joey- a delightful and wonderful human being and 2. he functions currently at a level where the issue of supervision is not as dire as many other families I know. Yes, I have to keep the doors locked, and we have our wild days, but for the most part, Joey is Joey, and he lives in a world that fits comfortably within the family scope and understanding, just like all the other family members, no problem. In fact, if Andy develops needs that meant he couldn't live independently, I'm ready, thinking about how we would all live here together as four full adults; but I know the possibility is higher with Joey than with Andy.

Then, what happens if something happens to me? Or more correctly, when something happens to me, and to JoeyAndyDad?

And that is when the planning goes into overdrive.

Joey is nine years old. We're over halfway to 18. We don't know what the world will look like in nine years. More like 8 years. What plans can I be considering and implementing now, to be sure when Joey ages out and I prove to be mortal like everyone else, Joey will still be able to enjoy his life and live it? That he will have resources to recover from the loss and move on? A better plan than "Andy will have to take care of that"? Yes, its time to start thinking about what balls might need to be rolling to prepare for the future. after all, they aren't little long- and once you are an adult, you are an adult for a long time (we all hope). We all know adult services are seriously lacking, everywhere.

Seriously lacking. Or non-existant.

So it is time to get started, since I doubt I will be winning the lottery anytime soon to start my disability school and family center. Though I admit to buying tickets. After all, that money goes to fund the services we already use.

My Goslin Meme, Slightly Early

Spread the Word

It happens all too often when I am out in public. The grocery store. The park. A museum. A bank. I don't even know why I bother to go into Walmart. The r-bombs, dropped everywhere, all around, no thought to anything, or anyone.

Going online, its like a blitzkrieg. That's so KABLAMO! Really? You are so WHAM! Come on, don't be such a KAPOW!

Gotta love the responses when you say something, too. Did you know you can offend someone, even when you "don't mean to"? That something can be hurtful, even if you "don't mean it that way"? That referring to yourself by a derogatory term does not make it less derogatory and insulting?

Then there are the folks who mean it just as they say it, and have no qualms with telling you that people with disabilities don't have the right to be educated, or accommodated, or even to live. Waste of breath, waste of resources, waste of time. After all, what do kids in special ed have to give back to society, anyway, after we spend so much money on them? Why not just let kids with severe physical issues just, well, die?

Going through life seeing red is really bad for my blood pressure. And I already have enough issues with my blood pressure, thank you very much. The sheer disrespect the use of this term spreads and reveals is enough to make one run screaming into the night, without people actually trying to defend it. And people who really think people with disabilities are a waste of space? They forget that it could easily... easily... be their kid. Their sibling. Their parents. Them.

And the "oh, I don't mean Joey" excuse? Yes, you do. Because that term is tossed at him all the time, used to refer to him, whispered behind his back and snickered at him from across the room all the time. So yes, when you are using this term, you are referring to my son.

And you know the real kicker? Joey doesn't even have intellectual disabilities. It isn't a term just about intellectual disability. It is a term used to degrade and dehumanize anyone who is seen as different, who talks a little differently, acts a little differently, is interested in different things or in different ways. It dismisses everything about people that is positive, constructive, and human. Joey's talents in math, in reading, in visual perception? Out the window. Because retards don't have strengths. That is how that term is being used, understood, bandied about, and wielded. Useless, ugly, stupid, irritating, waste of time, waste of space, contemptible, odd, crappy, disgusting, slow, insignificant. That is what you mean.

That is what you say about my sons when you use this word.

Please. Stop.

Message Boards are not good for my blood pressure

Tired of reading jerkface comments on news stories about ADHD and autism from people who scream that one or their other (or both) are "overdiagnosed" or don't exist. I also get tired of people who stomp their feet over the interventions used to help kids learn to cope, focus, and self-regulate. I get so tired of people who chose to remain ignorant.

It can only be by choice at this point. The extensive awareness campaigns for autism and ADHD in the popular media should at least by now have gotten through the thickest skulls that there are people out there who are different, and who may need extra support- therapies, medications, whatever. But no. Idiots and selfish, ignorant numbskulls remain.

Trying to speak reasonably to such people can be an exercise in blood pressure control and deep breathing. After all, the majority of them are not reasonable themselves. They send you to websites that are so obviously hate-mongering snake-oil-selling conspiracy-theory gibberish that you wonder how they are getting through life without a room full of diet pills and turnip twaddlers. Or maybe they haven't.

Here's the truth, folks: ASD and ADHD are both very real, and they affect both children and adults every day. Not everyone who are ASD or ADHD require medication, but some do. Occupational therapy, speech therapy, physical therapy... there are lots of interventions out there, far more than 30 years ago when I was a kid, and I thank God for it. Because seriously, that question, "where were those kids thirty years ago?" is plain annoying. Where were they? ASD kids were labeled weird and mentally retarded (using the term of the time), and all too often locked away, sent to special schools or self-contained rooms, or bullied out of school altogether. ADHD kids were labeled disruptive, often became angry, and as they grew older, often fell to self-medication through illegal substances or alcohol abuse. Growing up believing they were lazy and stupid, many resorted to extremes of behavior, and even suicide. Yeah- those kids.

Today, those kids can be supported and be functioning participants- very valuable participants- of classrooms and communities.


I really wish these people would go volunteer for their local special ed classrooms. They would learn SO MUCH... including some lessons on courage, perseverance, and humility.

For The Love of Sign

On Fridays, instead of spending the day cleaning my house and napping, I've been packing my favorite books into a bag- or my new awesome large-sized books (thank you homeschooling mom somewhere in my area who is selling off your stuff for younger kids so I can buy it up and use it)- and heading over to the schools. In the morning, I read and teach sign language to two of the special needs kindergardens and the classroom that has the autism resource kids and the tier 3 self-contained kids in it (it covers all three grades). And we all have an awesome time. Then i grab some lunch, and head over to Joey's classroom* to teach sign language.

In Joey's room, when I am teaching, I have Joey as my awesome Sign Helper. He knows most of the signs, even if he doesn't do a lot of signing, and he loves being the "teacher." He also loves looking up signs on my phone when someone asks for a sign I don't know. And looking up signs he fancies. He's getting good at looking stuff up.

Today, we did "outside signs" because most of the afternoon group are boys between 9 and 11, and I could show them signs for sports. I've shown them before, but memory is not the forte of most of these kids, for various reasons. So we did football, soccer, baseball, basketball. Then we needed hockey. I don't know hockey, and it wasn't in my faithful app. So I showed Joey how to use the Safari app on my phone, and we googled it, came up with it, and went on.

Next thing I know, he's uploading videos of the classroom to You Tube! How does he DO that? (How did he get my password???)

Then he starts teaching his fellow students all sorts of new signs, looking them up and announcing "This is hamburger!" (shows sign) "This is cereal!" (shows sign) "This is bird! Angry... bird!" (shows signs). "Ticket! This is the sign for ticket!" (he shows the sign) Of course, tickets are what they get to save up for rewards. So everyone starts giggling and getting out of focus.

"Careful!" I say, "or I'll show you the sign for 'homework!'"

"Homework!" Joey calls out gleefully. "Home... work!" (he does the signs) "Homework!" And dutifully (and happily), his classmates learn the sign. Now that is love of signing.



*I asked Andy if he would like me to come his classroom, and I got a horrified "No!"

Special Needs Ryan Gosling: Our World

The Boys: They Are Squishy.

Spring is here... Time for IEPs!

Yes, my hyacinths are blooming, I have daffodils opening, the rose bush buds are leafing out (shoot- I didn't get the pruning done!), it must be time to be thinking about IEPs- that map to Joey's future, based upon his present. All those thoughts, and goals, and concerns, and everything that have been mulling about must come together to think of the next step. SO what is Joey's present? What does my crystal ball say about his future?

As I once told Joey's teachers, in some ways, Joey is 15. He is SO ready for algebra. We need to get him moving into the abstract, so he can understand what the numbers are doing on the paper- but he is not so happy with long division, he can already cut through it to see the answer. He want to test Mom and Dad in his boundaries of being an individual, exploring scripts that include words he has found contain the power of immediate attention (you know, the ones not appropriate for school. Or family-friendly blogs.) He definitely likes having his "girlfriends" and really misses the friend that moved away, his "wife."

In some ways, Joey is still 5. He wants his cuddles. He makes friends with everyone. Adults are authority, no matter how they treat him, and he is happy to share hugs even with ones he doesn't particularly like. He wants his own way, and though he has learned to take turns and wait some, he's not always good at it. He still struggles with social interactions, such as maintaining conversations or keeping up with dynamic pretend play.

And in some ways, this is on par with being almost ten years old- an age where the little kid fades and the young adult begins, but isn't here yet. Not that I am that familiar with typical ten-year-olds, mind you. But in thinking what I have seen and read about them, I know that Joey definitely isn't one.

As far as I can tell, typical ten-year-old boys can handle things that Joey definitely cannot. They can build treeforts, ride two-wheeler bikes unsupervised through a neighborhood, can care for their own possessions, and often take on chores of the house like filling a dishwasher and taking out the trash with fair independence. Ten-year-olds around here seem to be able to play in the front of their homes without much supervision, even go to visit neighbors on their own. Perhaps the story of the ten-year-old on the New York subway is a bit extreme, but my mom remembers riding the bus in Baltimore when she was five- by herself. Ten-year-olds are able to think of things to do for themselves in their free time, even without a TV or a computer.

Joey cannot do these things. I wouldn't dream of letting him out of my locked gates without my eyes upon him. Every chore has to be supervised, structured, clearly delineated. Joey, build his own treefort? Leaving the coordination that such a feat would require aside, could he figure out a book about how to build one, and follow through? Watching Joey trying to hold a conversation is also something that, in the IEP season, strikes at my very core. Other kids talk and play so easily. There is a clear back-and-forth, a rhythm of communication even as ideas change, a coming to consensus and moving through the play, that Joey cannot do. He's getting better. But he's not like the other 10-year-olds, and boy do they know it. The constant unpredictability quickly overwhelms Joey, he can't keep up with the constant shift and change. He can't follow the way the other boys communicate by glancing at each other. He know they are communicating; but he can't decipher the code.

What does this mean for Joey's present? What does it mean for his future? As we take one step nearer to the dreaded Middle School Years, what can be done to mitigate the challenges that Joey faces in his uphill climb to being an independent adult?

In many kids' shows, there is an episode about Secret Clubs. Kids, especially as they get towards Middle School, are into segregating themselves into little groups, or cliques, of other kids that make them feel- well, a part of an exclusive little group. For some kids, this is not a good thing; for others, it is a way to connect with other kids going through life with similar ideas and goals, and to be more comfortable as they grow. There are secret handshakes, secret codes, secret meetings, secret games. In all of these shows, the point is that these clubs often make others feel left out, and that being inclusive is more fun. ITs a lovely little lesson on thinking of others, the merits of diversity and inclusion, and just plain differences between being nice and being mean.

For Joey, the whole of society seems like a secret club, and he is the one not invited. He doesn't have the secret handshake, the secret code, and isn't invited to the secret meetings. And with adult life, it gets to be a huge problem when those secret handshakes lead to the secret games called "employment." And yes, I worry that he may never really learn to deal with the dynamics of learning the secret social code, even if we can show him what the code means. It is like someone who speaks a foreign language- a native speaker can almost always tell the difference. There are idioms that a foreigner just never really picks up on, uses, or understands. After all, Joey will always be Joey. The question is, will the secret club let him in? How lovely would it be if we all kept those kids' shows at heart, and remember to be kind and nice, and not mean?

But such is not the way of the world, and more's the pity. In fact, most of society defends its secret club vigorously, and has no problem declaring it openly that my son may never be included, should never be included, and is a waste of time, breath, and money to try to fight for his inclusion. Others are more subtle, going through the motions but often denying support, or expecting the motions to be enough without the intention and understanding. There are also those who say they are inclusive, but their actions prove otherwise- and unfortunately, those people are all too often in positions of power and authority, including in school systems. They often are very vocal about being inclusive in public, while doing and saying things in meetings and behind closed doors that clearly speak otherwise. And sometimes, you have to plan IEPs with these people. It isn't pretty.

Spring is here, and it is time to think what goals would be reasonable for Joey in trying to get him to the next step. At this point, I am thinking in terms of making Middle School as easy as possible for him; but I must not forget the greater goal of adult independence and self-advocacy, goals that most parents assume as granted. Sometimes I wonder how wise that is- but perhaps that is the subject of a another blog post.

In the Knick of Time

Joey's been having a pretty good year, but we are still having adventures. After all, he's nine. And the last few weeks have been topsy-turvy for him. Joey's aide quit to go back to school, so we have had subs while the new one was found. We actually liked one of the subs, but she wasn't chosen in the end, because they found somebody with a special ed degree. We met her today, and she seems fine, we'll give it some time and see what happens. Here's hoping for awesomeness.

This is, however, a big personnel change, and thus a major change for Joey. This means he's been stressing and anxious, and finding ways to try to keep himself calm. We have some new soundified* phrases, and unfortunately the favorite involves a threat of licking. We have managed to put a stop to actual licking, but the phrase still has the word and makes him giggle. And unfortunately, when said in certain contexts, it sounds extremely inappropriate. As in, whoa, that was inappropriate. And let's get out of here now.

He's also been having... wardrobe malfunctions. Joey, being well-insulated and sensitive to heat in the first place, prefers to wear sleeveless shirts. These are not permitted at school. However, he has discovered he can wear them under another shirt... which he can promptly remove when he reaches school. We have made a compromise with him- he can wear the sleeveless shirt in small group times, but whenever he has to leave his self-contained classroom (ie, to go to math, group reading, specials, lunch...), he has to put on his shirt. All well and good.

The other wardrobe malfunction is Joey's preference for going commando. This can be especially problematic if he is wearing cheap pants, and the seams of the crotch come apart. This always happens when you least expect or want it. For example, Tuesday... during math class. Yes, there is nothing quite like getting a text from your child's teacher: "Mrs. Joeymom, can you please bring some underpants for Joey? He is putting his fist through a hole in his pants, and we have discovered he has forgotten to wear underpants today." In my defense, the bus was early, and the Knickers Check was thus missed that morning. Figures the one day we miss the check is the day he fails to put them on.

I will say he looked very happy to see me when I arrived with a new package of boxer briefs, and sent him off to the boys' room to fix the issue. I gave the rest of the package to the teacher to keep, just in case we have any more malfunctions.

But just in case you think Joey has become self-absorbed in his anxiety, I will share one story from his teacher. One of Joey's classmates is going through an incredibly tough time for reasons I cannot disclose. Let's just say, he had very good reason to be upset and sad and mad and anxious and overwhelmed, and thus sitting in his seat with his head down, in tears. Joey, seeing his friend in distress, starting patting him and telling him in his gentle way that everything would be OK, and giving the friend hugs. The classroom para told Joey his friend "just needs to cool down", so Joey immediate fetched a paper towel, dampened it, and put it on his friend's head to help him "cool down."

What? You thought autistic people have no empathy?

Allow me to introduce you to Joey...





*Soundified is when the words lose their meaning and become a stim. When Joey was little, he would blur the sounds so that you had more of a sense of the rise and fall of the sound, rather than words. Now he retains the words, but uses them without actual meaning- he repeats them because they feel good in his mouth or make him giggle.

Round Five: Ding Ding Ding! We have a Winner!

Yes, Andy's eligibility meeting was today. Again. But this time, we won.

Andy has issues with sensory processing, fine motor control, and visual motor control, on top of having ADHD. For years we have been asking the school for support. Now we have reached a crisis. Andy refuses to write. He will flat-out shut down completely when asked to write more than a couple of words. Homework can take us the entire afternoon. We are still behind on speech (but not as much as we were). His fine motor is rapidly deteriorating. Some of the evals we had to look at today were... well, its never good to see "1%" on these things (yes, folks, that's the "first percentile". And for those of you new to this, spot-on normal is 50%/50th percentile.) An afternoon listening to your child's deficits is never fun.

But now he is in such bad shape, since so little was done before, that he qualifies for special ed.

The good news: he'll get the support he needs, services to help him cope with sensory and handwriting-related issues, and will be more likely to be placed with teachers who understand ADHD and his needs. We'll have an IEP to back us up when we head to the next school in the fall- the one that was such a disaster for Joey. And it will be written by folks familiar with him, because IEPs are usually good for a year, especially getting one this late.

The bad news: More IEP meetings for me. Woo. Hoo. Oh, and the school has 30 days to even schedule the IEP meeting, so more delay in getting school service. And it means Andy is struggling right now, which makes me sad and angry, especially since I've been screaming for help since he was four, and everybody seemed to think I was crazy.

That's the ups and downs of the special ed world. Yay, your kid qualifies for service! But boo, he's struggling enough that he qualifies for service. If you're in the SpEd world, you know what I mean.

Is this week over yet?

Good Night, Susan

We have a blow here in our comfy corner of the internet. We lost WhyMommy today.

In this little corner, we don't have a big network of thousands passing through. I have about 50 regulars, and fewer who comment. I read only a handful of blogs myself. Toddler Planet was one of those. I wish I had been reading it longer, but its really only been a couple years. But Susan's blog is lovely, and strong, and funny, and... just like her. Full of love for those two little boys. Full of intelligence and eloquence and seriously, everything that this world needs a hell of a lot more of. And as she beautifully reminded us: it's not fair.

I never got to meet Susan. I never got my butt up to DC to go over and hug her. I've never met her boys. And I am sorry. With all my heart. I missed a fabulous woman.

Hugs to you all.





P.S. Please be aware of inflammatory breast cancer and be watching for the warning signs. This is a fast killer, and there is no lump to warn you of a problem. Discover more from the Inflammatory Breast Cancer Research Foundation.

Meanwhile, Life With Andy...

Andy has a big appointment today: his full eye exam. He'd been given preliminary ones by the school and at check-ups and all, but this was a big-time, take lots of pictures, flip-the-lenses, see the optometrist exam (though not as big as seeing the ophthalmologist). Dr. T was awesome.

The good news is Andy's acuity is awesome. Like, super-awesome. Yay, no glasses.

The bad news is he has inherited the family curse- his eyes don't work together. This explains some of our focus and hyperactivity issues, and our flat-out refusal to write. Imagine if you had the eyes of a chameleon- only a chameleon can control his eyes. Andy can't. It could be worse, though- he doesn't have "lazy eye," a muscle that is over-strong and pulls the eye visibly out of alignment. No surgery needed, yay. The other good news is that this is now fixable with vision therapy. Another yay. Except we don't know if insurance will help with the cost yet. Boo.

Dr. T also said that although this therapy will help with his focus and thus with some of the hyperactivity, she thought him "very active" and so it would probably not make it entirely go away. No surprise there, either. She then went on to note what a well-behaved child Andy is. Squirmy, yes. But when he was asked to sit up, he did it. When asked to do things by me or by the doctor, he did them. He was a little angel. Oh, right, I didn't have Joey with me...

News from my groundhog

Well, folks, today is Groundhog Day. In case you are not local and don't know, I have a very large, very fat groundhog that lives in my own back yard. Yes, he looks delicious, thanks. Very fat and sassy. (See him? Doesn't he look delicious?)

Today, he has predicted early spring. I didn't have my camera this morning (the photo is from a couple summers ago), but he was out, about, and waddling happily about my yard this morning. Smart groundhog. It was 75 degrees here yesterday, and its supposed to be just as warm today. Then it should fall back into the 50s. I am going to have Mosquito Madness here this summer!

So, folks, that's the scoop here from Fredericksburg Flemming. Get ready for your daffodils. Trim your roses. Plant your lettuce. Then let the groundhogs eat the lettuce.

A Chord Once Struck

I remember That Meeting.

We were in a preschool classroom, and the topic was ESY. We had covered for the school the year before by placing Joey basically in daycare, and we knew it didn't really work very well. We came with the idea that we would be discussing Joey's issues of the year and how they might be addressed, and the need for him to have year-round service. We knew every educational study done supported autistic students having year-round services. We knew the government offices published guidelines that recommended year-round service for autistic kids. We knew the doctor, the speech therapist, and the OT were recommending summer services. He needed structure. He needed focus. He needed school.

It wasn't an easy thing for us to give him up, but we knew that everything was pointing to this being good for him, so we would lose a lot less time in the fall. Time was, after all, the enemy. We had none to waste if we wanted the best possible outcome in the long run. We came in to the meeting, sat in the half-sized chairs around the low table, and the meeting began.

And the school OT pulled out a color print-out of the state guidelines for ESY, and started noting how Joey met none of the criteria, mostly because he wasn't showing regression.

We were absolutely blindsided. Do you know what color copies cost? Here was a professional, going against everything we had, everything that we had ever heard of... and though regression was not the "only criteria", it seemed to be the elephant on the page.

Hindsight makes that meeting even worse, because I know now that Joey did, in fact, meet the criteria on that page. We were just too ignorant at the time, and not quick enough, to be able to throw it back in her face.

We have all had That Meeting. The one where the people who are supposed to be helping you actively sabotage you, and for no good reason you can see. Malice? I still wonder if there wasn't malice in our meeting, for that OT had already proved to be incompetent, I had already parked my butt in her boss' office to note it. I still remember going to a private OT and discussing things the school OT had said and done (and not done), and the utter shock as the private OT said, "if what you are telling me is true, that is a major breach of ethics! Your OT could lose [thei]r license!" and knowing that reporting the OT was going to do no good. We had already tried that route.

But sometimes it isn't malice- or at least, not conscious malice. Often, it is ignorance that fuels That Meeting. We expect professionals working with our kids to be... well, professional. The ignorance can be a shock. It bowls you over and stomps you into the dust. Did that person just say that? Really? They know better! And they are in a position that leaves us caught in a game of politics, or policy, or whatever, leaving us powerless to get around this person. We find ourselves at a roadblock, often unexpected, and have to think quick to come up with alternative paths. When someone actively sabotages you and your child, it can be an exercise in futility, frustration, and ultimately, creative problem-solving. How do I get around this person to make sure my child gets their needs met?

For us, the answer was lots of OT camps and speech therapy camps that we had to pay for ourselves. There wasn't time to go o Due Process- summer was upon us, and Due Process can take years. It also takes money. We now needed that money to pay for therapies. OT camp isn't like Summer Camp. It costs a lot more. But we- and Joey- were fortunate. We could take that option, even though it wasn't really enough.

The next year, the regression from summer couldn't be ignored. The stress couldn't be ignored. The slamming doors could not be ignored. We got ESY.

But we all know That Meeting. I don't think I have met a special needs family who hasn't had That Meeting. Unfortunately, most of the families I know have had several. We've been pretty lucky in avoiding That Meeting, but we have seen ignorance from plenty of people who should know better- whose JOB is to know better. What is scary is when some parents have That Meeting and it is the life of the child at stake. Educational issues, I can come up with Plan B, C, and D. For families facing serious medical issues, That Meeting is catastrophic. It is a life or death moment.

That is why I am glad to see 18,000 signatures on a petition against That Meeting. When you know you are not alone, and we take a stand against That Meeting in its most terrible form; that is the power of letting someone know the catastrophe is upon you. We've been there, and we are, as a community, saying: No More. Stop the ignorance. If you are a professional, act like one. Don't be the ignorant obstacle at That Meeting. Do. Your. Job. And do it in a professional, appropriate manner.

Go Team Amelia. Here we stand.

The Fight for Amelia

In my last post, I noted the post where Amelia Rivera's parents were told by a doctor that Amelia did not have a right to live because she is "mentally retarded" and "brain damaged." I was right. I didn't get any sleep that night. The thought that there are people- professionals who are supposed to be familiar with disabilities and the rights of people with disabilities- is terrifying.

Note I didn't say "surprising." Unfortunately, we know better. We know the ignorance remains, even in people who should know better. Who are trained to know better. Who we trust to know better. Even people who say they know better.

That is why the fight for Amelia is so important. There is no excuse for anyone to deny someone the right to live, especially by denying them appropriate medical care and service. Professionals of a children's hospital know better. If they don't, the hospital should take measures to find out why, and make sure everyone on their staff knows better, and believes that all people are due their basic rights.

Not just the doctors, nurses, and social workers, either. Everyone. The administrators, the assistants, the janitorial staff, the cafeteria staff, the volunteers, the secretaries... everyone.

Disability is no excuse for denying a person- no matter their age or your assumptions about their "quality of life"- the right to live. People with disabilities are already actively targeted for bullying and crime; they don't need to be targeted in a hospital, when they are trying to get medical care.

This is important. Today, it is Amelia. Tomorrow, it could be Joey. Or Andy. Or you.


To see a list of more posts written for Amelia and disability rights- such as the right to LIVE- check out this site.


And please: sign the petition!

Nightmares

I am not likely to get much sleep tonight. I read a blog entry about a child denied a life-saving kidney transplant- from a family donor- because she is "mentally retarded" and "brain damaged."

That is a nightmare I have all too often: that Joey might be denied medical care because someone deems him to have "low quality of life" because he is autistic. It is a very real and near fear. After all, we have to fight- often fight hard- for people to respect his right to an education. We had insurance that denied his right to certain therapies (fortunately, JoeyAndyDad got a new job with new insurance!). In other words, we fight every day because there are people that consider Joey to be less than human, a waste of resources, a drain on the "system." Because he has a disability, there really are people in this world who consider him of less worth than... well, themselves.

I spent the afternoon in Joey's class today. It is always an experience that blends hope, amazement, pride, joy, love, and depression in measures, and comes out as something that makes me think hard about what life means, and its amazing value. I am not at liberty to divulge the variety of issues and the range of stories behind the lives of Joey's classmates, but I can tell you that each and every one of them is an incredible human being, doing things that are nothing short of miraculous. And many of the stories are, at the same time, desperately heartbreaking. And some are all the more heartbreaking because there are people who think these kids are, basically, junk to be tossed away. That anyone could look at any of these children and not see how utterly amazing they are in the face of their challenges and because of their amazing talents is just... mind-boggling. And incredibly sad. It even makes me angry to know what some of these kids go through every day, because there are people in this world who think they have no value.

That someone might deny any one of these children the right to live is something we should all actively, aggressively, and positively fight, every day, every minute. Such denial is a shameful manifestation of evil in this world. It is up to us to fight it with everything we have.

We live in a country that recognizes everyone's right to life, liberty, and the pursuit of happiness. Nothing in the Bill of Rights says we have to take an IQ test to have those rights.

All taken care of

One of the strangest things people say to me when we talk about Joey is "God has a special place for you in heaven!" or the now-more-common, "God will reward you!" No, really, That's just... odd to me.

Now, I know some folks get very offended by such statements. I don't. I understand that the person means to be friendly, comforting, and sympathetic to my role as a parent of a child with special needs. Sometimes it is hard to have a conversation with someone, and hear about hard days, and know what to say to a world that is totally outside your experience as a person or a parent.

I used to say "thank you" and move on. Now I have a new answer.

"He already has! He's given me my boys!" And my life. And my husband. And my mom. And my friends. And...

People seriously need to get into the groove of thinking about my kids as the lovely, beautiful people they are, as the precious gifts they are- and not just to me, but to the whole world. Each and every one of us- we're gifts. We have the potential to do so much, each and every one. It is up to us to do our best to show our gratitude by helping the world be the wonderful, beautiful place it can be.

So that place in heaven? All taken care of. Right here, right now. Thank you.

A Growing Problem: Curbing Anger

Joey is getting big. Like, big. He's nine and a half, and he's going to be a big man- even if I get his weight under control. We are starting to really understand the issues that come with being the parent of an autistic young man. For one, if he loses control, he could really hurt somebody. Like me. Or like Andy.

I know I often leave off the blacker side of living with Joey, and trying to help him, but I am realizing that many more of us are dealing with issues of temper and anger than perhaps we want to admit. It is a challenge to teach any child about controlling frustration and expressing anger in ways that are constructive rather than destructive. Trying to teach one that has issues with communication in the first place? Then add a daub of impulsiveness to it? Now add some not-so-healthy depression? Holy. Freaking. Cow.

Honestly, I am finding myself at a loss. Trying to discuss the issue with Joey is a super challenge that I am finding myself struggling to meet. Joey does not cope with criticism well, and starting the spiral into "I'm a bully! I'll never...!" makes it that much harder to try to get him to understand; and until I can get him to understand, I'm not sure how I can get him to help me understand.

I know that didn't make much sense. What are we trying to understand?

Both of my kids use communication system we call Engine Run to help others understand how they are feeling, to get in tune with their own regulation issues, and learn to self-regulate and manage. Basically, you think of your emotional state and body as a car. If your engine runs too high, you can crash or go flying off a cliff, or get into a speed-related accident. Not good. If your engine runs too low, you block up traffic, people honk at you, and you don't get where you need to go. You want to get your engine running just right. Then, the program works on teaching kids what kinds of sensory integrative activities and strategies help them for when they are running too high or too low.

My problem is when Joey goes from running a little on the high side to running white-hot HOLY MOLY and crashes off the cliff, what do I do? And how do I prevent it from happening again? Or at prevent him from hurting himself or anyone else? This is a question not only of what to do in the white-hot moment (restraint), but also prevention (de-escalation).

The other day, we came home and he was upset with me. I can't even tell you about what now, probably I had to take a toy or a stick from him. What I remember is standing at the door of my house, trying to turn the key, and getting pummeled. Absolutely pummeled. I had enough sense to get his arms and keep him from running off down the street, getting the door open, and screaming for help from JoeyAndyDad. Being chubby likely saved me from having major damage to my arm, he was slamming me with his fists so hard. I'm surprised none of the neighbors called the police. We got him inside and into his room. We got Andy inside and checked on him, because talk about scary! And of course, ten minutes later, Joey had another melt because he realized what he had done, and that I was hurt. All I could do was hug him, and get him through another round of "I'm a horrible boy!", which can only be countered with assurances otherwise, and lots of assurances of love.

But I knew right then, I was in trouble. Deep trouble.

I have had to ban Mario Brothers from the house for a while. Both boys get so over-excited that it becomes dangerous. They play away fine, and then some small issue rears its ugly head, and danger strikes. Someone gets hit. Someone gets kicked. Joey flew at Andy an bit him so hard on the shoulder he left a bruise- I'm surprised he didn't draw blood. It was like watching a tiger attack, and just as lightning-fast... and terrifying. And horrible. How does one get across the seriousness of this behavior, and the need for it to end RIGHT NOW? Getting him to calm down was my first response, but nothing I could think of seemed adequate. Sure, I banned the game. Sure, I shut down the Wii, hid the DS, sent him to his room, brought him down for a talk. Andy was already apparently past the whole thing by the time Joey was calm enough to speak reasonably. But he could have been seriously hurt.

It's a growing problem. And as he grows, and we stare puberty in the face, I fear this isn't going to get better any time soon... unless I act now. And even then, it may not be enough.