On Laughter and Sadness, Relief and Distress

Autism_Awareness_by_thisfleshavenged

They called. After being on a waiting list since September of 2011, they called and we started the process to finally find out what is going on with Evan. It started with an appointment with a developmental pediatrician. A very long appointment. And it was so frustrating that I ended up sobbing for the second half of the 4-hour interview. How do you replay every little issue a child has had since birth, through age 11, into one appointment? And of course I totally had unrealistic expectations for the appointment. I knew how the process would work way in advance, that this was just the start, but still—maybe it is the mom in me—I clung to this appointment like our lives depended on it. It was my lifeline.

Because Evan has gotten worse. He seems to be deteriorating before our eyes. In truth, the differences between him and his peers is probably just becoming more noticeable with age. But still, this is how it seems from so…up close.

So the doc did his job. He gave me some assessments to complete. Written ones. One for ADHD and another for autism spectrum disorders, which confirmed my gut feelings all along. He doesn’t just have ADHD. There is more going on. Simple as that. But what? Turns out that Evan met as much criteria for an ASD as he did for ADHD. So referrals were made and appointments were scheduled. Speech, OT, psych, IQ evaluations over the coming months. Today…Well, today was Day 1. But first some background information.

Since we have suspected Asperger’s for Evan for some time now, I have really been paying attention. And suddenly, as we are meeting with and speaking with these experts at a major pediatric research institution, and they are asking questions about Evan. About early childhood, how he has developed, how the problems have surfaced. And everything…everything…is making sense. How, when he was little, Evan would flip over toy cars and trucks and just play with the wheels. As he got older, he did the same with his tricycle, bike….How Evan never could sleep well. I remember one time in particular that John and I had not slept in over a week, and we were so sickly-looking that Ev’s pediatrician gave him a powerful sedative for 2 nights, giving us orders to give it to him at bedtime and we were to go to sleep. All of his independence. I thought he was just really smart, and he is, but the independence at such a young age…He still has trouble with his shoelaces, yet he has been able to operate a computer since he was 3. And then there is the freak-out we get when he is tickled, played with. We found out yesterday that he feels like he has to have his feet on the ground. And he likes deep pressure. Thus the embarrassing resurrection of the outgrown clothes that are waaaaaay too small.

So his first day of evaluations came. First, the ADOS, or Autism Diagnostic Observation Schedule. A speech-language pathologist did this with him. It was 3.5 hours long, and I had no participation other than to sit in a separate room and watch on a video monitor with a set of headphones. It was so surreal to watch my baby, and while we have witnessed his behavior first-hand, there are just some things you block out. Watching him on that screen, I was able to see him how an uninterested third party might. And I saw.

I saw the little boy who barely made eye contact. I saw the mix-up of literal and implied meanings—I didn’t even realize he did this. I saw the kid who, despite a huge vocabulary and intellect to match, could not keep basic emotions separate. And then the part that literally left me gasping like the wind had been knocked out of me: she was talking to him about friends. Well, even though I hate it, I know Evan has no friends. So I am saddened to hear him describe his classmates. First the girls, then when the therapist asked him if he has any who are boys, he started to name the boys in his class. She asked him to describe the difference between classmates and friends and he could not. She asked him what made these boys his friends and he named one boy in his class and said he is his friend because he doesn’t bully him as much as the other boys. And the blood rushed to my head. My ears began to hum and tears stung my eyes. This. This is the part that hurts so badly.

So on we went. Next eval was occupational therapy. The therapist didn’t know what he was being evaluated for in order to keep an unbiased opinion. And after reading his history, she asked me about Asperger’s. And after telling her I didn’t think she would find anything other than handwriting and a couple of other fine motor issues, I was stunned. He has no coordination. He couldn’t catch or toss a ball with any accuracy whatsoever, had very little by way of dexterity, and after assessment, seems to have major sensory issues, She gave him some stiff putty to play with and he came alive, kneading it and working it with his fingers the entire time. She gave him an exercise ball to bounce on and for the first time in a long time, he looked content. He looked happy. Animated. He looked relieved.

I have been both amazed and, well, wrecked a little if I am being honest. Every little question, every little nagging thought you have as a mother…knowing something is not right, but nor being able to point it out specifically. Well, over a decade’s worth of that is coming to a conclusion, so it is like a weight has been lifted. And then there is the knowledge: will he ever have friends who appreciate all of the amazing gifts he has? Will he have a date to the prom? Goals for his future? Can we overcome this, too?

Today, I got info in the mail to get him registered with the Autism Treatment Network. That one killed a little bit. I carefully filled in his name, his city and date of birth underneath the letterhead with the dreaded A-word that can invoke terror in the hear of any parent. And I thought back to the day he was born. The hopes we have held just for him. The memories of smiles and laughter, of amazement at his ability. And I knew, suddenly. Just like that, I knew that, just like when he was a baby and we helped him through colic or reflux, or formula intolerances, just like I helped him when he had an ear infection or a scraped knee. I will help him through this. I will champion for him. He is my baby. He is still perfect.

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Moo, Dog, Eat, Bath, Bye, Go,

No, this is no an SAT or ACT question, as in what do these words have in common? This is a list of the words Zachary has said for the first time—in the past 48 hours.

What did I tell ya? That as soon as I start to worry about his failure to reach a milestone on time, he comes up with things on his own. And his little voice! That cute, sweet, baby voice is so adorable. It reminds me of the time when Evan really started talking. Only Evan was much older than Zach is now, and when Evan first really spoke, he spoke in paragraphs with enunciation tha belonged to a middle-aged college professor instead of a toddler. We would get stares anywhere we went, this mother and her child, speaking to one another like they were peers. It just goes with having a smart kid.

Zach is not Evan and Evan is not Zach. As Zachary’s personality unfolds, we can start to see that he is more like John than he is like me. Rambunctious, a lover of the outdoors, all boy. Evan is my intellectual child who would rather stay indoors with a computer or a good book. He’s temperamental where Zach is laid-back, much like John is easy-going and I am high-strung. Yin and yang. My boys. Zach wantts to play ball, and Evan would rather ponder the kinetic energy required to make the ball move.

And I love them both so much it hurts.

Planes, Trains, and Automobiles–Wait, No Planes

Well, mainly because I hate to fly. I’m not once of these crazy-scared ones. I’ll get on a plane. I just don’t like it and fear for a fiery death in the back of my mind the entire time. Maybe it’s the whole laws-of-gravity thing, as in I’m fat and we shouldn’t tempt fate by keeping me up in the air like that. But anyway…

A couple  of new developments. Katie, the photographer from Heaven, had an opening for a session with the boys and I couldn’t pass it up. This time was a lot simpler and exhausting at the same time. The boys were dressed very casually as we met at a local train museum. Well, really it’s like a train graveyard, full of old cars–cabooses, engines, passenger cars. There were even some switches and lights for he boys to play with, and I literally put Zach down and told both boys to just go, all while Katie did her snap-snap-snap  thing. Today, she posted a few on her Facebook page as a sneak peak, and I love them. Once again, she captured them so well that it is as if my babies live in these photos.

This last one is proof, at least to me, that even when he’s hurting, Evan eats the camera. Maybe it is just me, but I can see the pain underneath in this photo, despite the fact that he had sent over an hour running and playing, and just being a kid.

Remember when John said he wasn; going to call his family until they called him, all after their reaction to our telling them of Evan’s issues? Well, John is John. And Friday was his mother’s birthday, so he couldn’t not call her to wish her a happy birthday. It’s just who he is. But the end resul is that after his mom sounded “sad” on the phone, according to him, we are making a trip down there for Thanksgiving, albeit a short one because I have to work Thanksgiving night. This ccould be very interesting. I’ll keep you posted.

Asperger’s, Mood Disorders, ADHD, Oh my!

The much anticipated, very coveted appointment at Cincinnati Children’s Behavioral Health went down today without a hitch. It even included a funny photo of Evan with a ginormous Alvin (of chippmunk fame) statue, but my phone is being shit-tay, and thus I have to wait to upload it. So anyhow…

We met with a therapist whose name is difficult to pronounce and even more difficult to spell, so she is now and forevermore “Jane” on this little blog. And we talked. And talked. And talked.

Incidentally, did you know that there a gajillion and one ways to ask the same question? Mainly because I cannot see clearly into the mind of Evan. Do I see hopelessness? Apathy? No, I don’t think so. I see a smart little boy who has tremendous meltdowns. Who cannot get along with his peers, is a social outcast. I didn’t know it until Evan ‘fessed up that he has been getting picked on at school. The shrink wanted to know if it was physical or verbal, and he told her it was verbal. This broke my heart. But we’re going to help him.

The plan? The plan is another appointment with the shrink, this time with more one-on-one time with just Evan. What follows that? A battery of tests from the DDBP division. WTF? I don’t know what nit stands for, but I know that they do all of the autism-spectrum-of-disorders diagnoses. Specialists within a specialty. There is a whole team. Some specialize in home interactions and family of origin. Some specialize in interaction with peers and social issues. Some specialize in the academic environment and performance. And they will all evaluate Evan separately, then get together with the information to tell us exactly what is going on in his very capable brain. He will also be having formal IQ testing to determine the precise level of his giftedness.

So what is the verdict? None yet. We just have some ideas of where there needs to be further testing. When I told her that I was not convinced that it was just ADHD, she confirmed that I was right, that ADHD is seldom the only issue. The question is what else is going on? So we are looking at a possible mood disorder, Asperger’s Syndrome, and ADHD components. Scary shit.

I’ve gotten to the point over the past few days where I really don’t care what they call it. His academic ability means he will never need special education, so it isn’t like the labels are going to follow him. All I care about at this point is that we are able to help him. That is the point behind all of this, and all that matters to me now.

Into the Mirror and Outward

I had problems as a child. I never wanted to admit it to  anyone. I was like Evan, except for the school issues. In school, I can literally remember getting my name on the board one time, and I cried for the rest of the day. In high school, I got one detention, and even the teacher knew I didn’t belong there, and instead gave me his car keys, his credit card, and a list and sent me to a nearby grocery store instead of sitting silently like the other kids. That’s it.

But when I would get home? I would explode on my parents. Especially my mother, because my father would “discipline” me in a way that left bruises for weeks. When I was in junior high school, I was so upset by the way my mom and dad failed to understand me that I took an entire bottle of Advil, thinking it would kill me. Somewhere around that time, I cut my wrists with the superficiality of someone crying out, not the deep jaggedness of someone who meant business. I just wanted someone to understand me. And I can date it even earlier than that. My mother was so used to hearing nothing but praise at parent-teacher conferences that she considered it a huge waste  of her time to go to them. Until third grade, when Mrs. Holbrook told her she saw something in me that was a little off, and recommended a psychologist. Mom was furious and wanted to know what she saw in me that nobody else did, and insisted the woman was crazy. Looking back, Mrs. Holbrook was right, mom was in denial of the way I acted at home, and I think afraid of the stigma of mental health issues that still exist today, let alone 1985. We didn’t have labels for everything. And then there is the gifted classes, that label, that left me feeling alienated from my peers.

I still have those feelings today. In the way it is unpleasant for me to make eye contact with others. In the way I feel awkward socially, and over compensate by being too boisterous, too loud. It is in the way I cannot handle certain things and lash out to the ones closest to me. Evan has the Titanic, but when I was his age, I had the Holocaust, and even arranged for a survivor to come and speak to my gifted and talented class as part of an independent project. I never studied. Never. Straight A’s come so easily because I can just listen, and on test day, can play back the information like a recording. It almost seemed like cheating. And if I don’t use the mental tape recorder trick, well, I can close my eyes and  see the meticulously prepared study guide. Not that I studied it. Just writing it out was enough, organized into sections by study points, to where, on test days, I could close my eyes and zoom into the exact section that has the information on it that I need to recall to answer the question at hand. It is as real as zooming in on a detail with the view finder of a camera. I was that way through high school, my first attempt at college, and respiratory school. It benefits me in my current career because I can still do this with notes and texts from respiratory school, even 6 years out.

And I remember when they told us they thought Evan was so gifted. I cried. I didn’t want him to be like I was as a kid. It was too hard. Because I didn’t have a label back then, but I knew that something was always off just  a little bit. Something made me not normal. I buried it, though, fooling myself that we all feel that way at times. That there is nothing special or unusual about me. I just have a really good memory.

And now here we are. We’re going through this stuff with Evan, and I am doing all of this research. And did you know that there are quizzes and questionairres online to see if you could possibly have Asperger’s Syndrome? And as I was reading, I started to read stuff that seemed more familiar than just seeing them in Evan. And I was taken back to my childhood. I can honestly remember all the way back to preschool. Learning Station One in Cincinnati, which had a real live caboose on its playgorund in front of the school, hence the name. I remember learning to read there when I was three. I remember my favorite pink overalls that I loved so much that mom bought the same pair in lavendar. I remember the day before preschool when I was with Mom at Burger Chef before it became Hardee’s, and then Carl’s Jr. And I went up to the manager to inquire why it was “Burger Chef, like “shy”, Not Burger CHef, like in “cheese”.   I was three fucking years old. And not only did I have a grasp of the language enough to figure out the inconsistency, but I fucking remember it as if it happened yesterday instead of 32 years ago. I can close my eyes and see what my mother was wearing that day. And we went through a different letter of the alphabet everyday, moving on to sounds when the alphabet had been used up. And each day, the snack and art project would involve that letter or sound. I remember being so excited for the letter C because everyone knows C is for cookie, and I would be getting a cookie. I was pissed when I got a different C food that day: carrots. See, I remember it all.

So I started taking these quizzes along with Evan. And everyone of them said the same thing: I could possibly have Asperger’s and to see a psychologist. Not Evan. Me. They said the same about Evan. There was one that sparked intense debate here, because of the questions. And it went something like this:

A man goes to buy a smoothie, and is thirsty, so he asks for the biggest one they have. The cashier tells him that they large one now comes in a collector’s cup. He says he doesn’t give a damn about the cup, he just wants the largest smoothie. Sure enough, it comes in the collector’s cup. So the question is did he get the cup intentionally? Now consider this…

The same man goes to the same smoothie shop and again, asks for the biggest smoothie they have. The cashier tells him that the large smoothie is now a dollar more. He says he doesn’t care about price, he just wants the biggest smoothie. So the cashier gives him the smoothie and he payes the dollar more for it. Did he intentionally pay a dollar more?

Evan and I said no, that the cup and the dollar more were both unintentional. He just wanted the biggest smoothie and the dollar more and the cup came as consequences for getting the biggest smoothie. John argued with this, stating that the cup was unintentional and the dollar more was intentional. WTF? Evan and I couldn’t understand this. John argued that he could have opted for the smaller smoothie and not paid the dollar more. But if this is the case, he could have opted for the smaller smoothie and not gotten it in a fucking special cup. Anyhow, apparently the fact that Evan and I both could not process this information like John means that we are likely to have Asperger’s Syndrom while John answered the way normal people do. Stupid test.

So what of it? What if Evan has Asperger’s? What if I do? Well, if I do, he is more likely to as a genetic link exists. Does it mean we are mentally retarded? Does it mean anything at all? If I am interpreting the information I have taken in, it means we just think differently than others. That can be bad, as in social difficulties, and it could be good. It is thought that Einstein, Newton, Bill Gates, Mozart, and more of our greats have had or do have the disorder. The greats of our society, which is most likely one of the reasons that one author even attributed it to Darwinian evolution of the species. As in survival of the fittest. And “Aspies” right there in the center of it all.

It still is up in the air how I will handle it if Evan is diagnosed. I have my hunches as a mother, but actually having a psychologist tell us he has it without question is another thing altogether. Does it mean he is disordered? That I am? Did I somehow cause this as I have parented him? Didn’t I love him enough? (If this notion seems ridiculous, I urge you to google “Refridgerator Mothers and Autism”.) Or does it mean that, with proper direction and management of symptoms, the kid could be in a class with the above-mentioned people? I don’t know that I want that for Evan.

Happy. Healthy. Normal. That’s what I want for my child. For myself. But is there such a thing as normal these days?

On Fourth Grade and Wrapping Up a Decade

Evan at 6 Weeks

Evan at 2 Years

Evan at 4 Years

Evan at 5 Years

In just a few short weeks, Evan will be having his 10th birthday. Before that point, we will have his first day of fourth grade in two weeks. He’s growing up so quickly. I remember when he was so tiny. And he has always been so beautiful. He has also been my greatest challenge, from colic that left him crying for 6 hours a day during infancy, to the day when he was in first grade when we realized he may very well be smarter than all of us.

I remember the day we took Ev to be tested for public preschool and they told us that he didn’t need preschool, that he was ready for kindergarten. The day he tested for kindergarten, and he looked so damned small compared to the other kids his age. I worried about him so much because he seemed so babyish compared to his classmates and so I was afraid he would be bullied. Instead, he was babied as if he was their little brother they had left behind to start school. And that first day he went to school? I couldn’t stand the thought of him taking the bus. Instead, we drove him. We walked him in, and I sat in the gym as the kindergarteners filed out to go to their classrooms, Evan a full head shorter than the rest of the line. And as he walked away, so excited, and he glanced over his little shoulder and our eyes met, I cried. John had to pull me out of the school gym by the elbow.

Each year since that day has flown by so quickly. It isn’t fair. If I would’ve known, I would’ve memorized every giggle, every smile. Every scraped knee and every task mastered would be available in my mind for recall. Just now, I realized that this is the last month of his first decade here with us. A decade. Evan. And for the first time in the continuum of his childhood, we are closer to the day he will leave us than we are to the day he came into our life, and I am having trouble with that realization. My baby. My angel. My first miracle.

This is the year we have to decide if we are going to send Evan to the gifted and talented school in our area. If we do, his fifth and sixth grade year will count as his “middle school”, followed with three years of high school level work and graduation. He would be started college classes at fifteen. On one hand, I am thrilled that this opportunity could be his. He wouldn’t have to leave home to start college, since we have three universities within 30 miles of the house (Xavier, University of Cincinnati, and Northern Kentucky University). But still, it seems so short a time, and there are so many things to consider, the least of which is the $7,500-per-year tuition that comes with this prestigious school.

I cannot allow myself to rush this, the remaining time we have of his childhood. I know that as quickly as these years have passed, the rest will probably be even quicker. And while Evan is not without his flaws, he truly is an exceptional child. We have been so blessed.

Evan at 9 Years

On Rainy Days, a Lost Jackass, and the Truth Behind All of Those Therapy Jokes

Little and Big playing together.

Hey, guess what! It is a virtual farking monsoon outside. Again, and thus delaying Day 3 of the photography challenge. Again. I really do suck at that. So instead, I took another photo for you: Zach and Evan, amusing themselves incessantlywith a battered laundry basket. I’m not sure what is going on with the weather, but earlier today, it was a nice and sunny 90 degrees. Not a cloud to be seen. And now? We’re all couped up in the house from the weather and I am wondering if poor Evan will even get to play outside or swim or do any of the things a 9-year-old boy should be doing on his summer vacay.

It has been a busy week here in the Bitchypants house and I have a few things to talk about, but –oh my God—first things first! Who could have possibly rocked the livin’ shit out of her classes again? Me, that’s who! Hells Yeah. Well, the final grade isn’t calculated for my management accounting class, but my final paper is submitted and so far, according to my grades, I could’ve just not submitted the final paper and I still would’ve gotten an A in the class. I got a perfect score in my business law class. And now I have until June 3rd before I start another class. The next one is E-business. But in the meantime, I swear that, other than this blog and the occasional tweet, I am not writing a damned thing. No word counts, no APA, no crap.

So I came home from this morning’s appointment (I’ll get to that in a minute) and I get on the internet and find out that there is apparently this huge controversy involving one of the MTV Jackass boys and Ebert of movie-critiquing fame. Because—OMG—Ryan Dunn of Jackass fame was killed in a car accident. Now if you aren’t a Jackass fan, I’m sorry. I can remember when John and I were young mid-twenties punks and we stumbled across this show on MTV called Jackass. And I don’t think I have ever laughed so hard at anything in all of my life. I think th skit they were doing was called “BMX Joust” . And we were caught, hook, line, and sinker. Then came the Jackass movies and the boys got a little gross with their antics. But Ryan Dunn was one of our fave Jackasses. And it seems there was drinking involved, so this is where Ebert comes in. Something-or-other about friends not letting jackasses drive drunk. Okay, Ebert. Possibly true, but still in poor taste.  And now the movie critic is the Antichrist on the ‘net.

Evan had his first therapy appointment today with a guy who seems to be in his late twenties. Before we went, I primed Evan by explaining that we were going to tell this guy things, not because we were mad at Evan, but because this guy can help us if we are honest with him about what is going on here. And bless his heart, Evan was honest  and ‘fessed up to all of his stunts, tantrums, and more. We talked about everything from the Great Christmas Caper several years ago, to how he lied to his Grandpa about us witholding food from him all to get even with John for some perceived slight. We talked about the toys and the rules and how neither get any respect. We spilled our guts about the tantrums and meltdowns and how there is no harmony here in the house. And then I got home and read the paper they gave me on the practice, which came complete with a price list for treatments. $375 per half-hour for a psychiatrist. $225 per hour for a therapist with a graduate degree. Thank you, Humana. Because I paid my $35 copay. But ever since, I have not been able to get all of those we-can’t-afford-therapy jokes parents make when they feel like they are doing something that could be psychologically damaging to their children. Because this therapy shit is no joke. And we have another appointment for next week, so I am picturing someone in an office somewhere making the cha-ching noise because my kid has behavioral issues and needs some help. And we haven’t even gotten to the psychiatrist yet. The plan is to get a few therapy sessions under our belts first so the therapist can get a better idea of Ev’s issues. If medication is in order, we will be seeing the main shrink. And Humana will be paying even more. So now I’m wondering if, after the Pregnancy Heard ‘Round the World last year, and Evan’s current issues, is Humana going to cut me off? I speak of all of this, but the truth is that even if they charge us a cool million, I would find a way, even if it meant extracting one kidney from each family member to be sold on the black market. If Evan needs it, the cost is immaterial.

So I guess that’s it as far as boring-ass updates go. More later.