day three: #NAC17

I'll be honest, I expected a lot from the experience of attending the National Autism Conference, but I'm having a hard time. This is not at all the result of the quality and amount of information that is being given, (it is an amazing conference) it's that they really don't seem to have expected anyone on the spectrum to have shown up, aside from kids in the Children's Institute program. I know, as an adult, I should have realized this going into it. However, it doesn't mean that I'm not somewhat surprised that they don't accomidate differences a little more since people on the spectrum are the topic of conversation so-to-speak. They do provide "quiet rooms" for adults as well as a "closed room" for kids, (where Johnny and I have lunch so that he can't escape!!!) but I don't need silence, I need help processing. I need to stay above water. There is so much that I want to know, but it is somewhat impeded when I can't stand around and ask questions. Sure, you're welcome to, but the time is limited and if you have a kid upstairs-- forget it! I have to go get him, they don't keep the kids over lunch! I guess I just figured a conference focused on people who learn and process information differently than the rest of the population would cater a little bit to those different styles of learning. I know, I was stupid to think so, and they expect adults to be "normal" if they're going to attempt to attend, but man... I've skipped the last session of the day two days in a row now (despite desperately needing the information from yesterday's) and I would be doing the same in a few hours here (if I don't leave before then -- I'm debating it) if it weren't for the fact that there isn't a second afternoon session today. I can't sit still for THIS LONG (and I know a lot of neural-typical adults that can't either) or upright in a chair facing forward. I forgot what it was like to be in a lecture setting... I can't do this! There is a reason I dropped out of college and switched to online learning!

I'll come again tomorrow (and luckily have Stephen coming with me, so I'll probably be able to handle it better) because there are more sessions I really want the information from. Can I get a beanbag to sit in? Do they have a few fidget toys (didn't think to bring any of my own) to keep me more focused? I'll have to bring toys tomorrow, but my body seriously doesn't like the position it is forced to be in if I want to learn anything. This demand to sit still and upright isn't working. Add in the fact that even among these "understanding" individuals, bringing my weighted blanket or something else heavy to sit on my lap wouldn't go over without a lot of judgment and strange looks. Strange looks, or pity. I DON'T WANT PITY! There is nothing pitiful about me. I just can't handle these specific tasks the same way a lot of others can. I promise you, I can do a heck of a lot of stuff they can't. Am I allowed to judge them and look at them like they are aliens just because they can't keep up with me in other areas? 

It wouldn't matter anyway, as I'm the minority. No one cares what the minority thinks.

You know, for growing up a white kid in a primarily white town, you'd think I wouldn't know anything about being a minority. The sad part is, aside from my race/ethnicity, there isn't any other aspect of me that fits into the majority category. We talk all the time about how some races are the minority or some religions aren't as well tolerated... women in the workforce aren't treated the same as men... people make enough money for the standard desired lifestyle or they don't... sexual orientation is socially accepted or it isn't... but really? There are more minorities out there. Some of them just don't have as loud of a voice. Or they do, and no one wants to listen. 

My advice for the people of the NAC? Autism doesn't stop when a child reaches adulthood. For all of the tolerance and acceptance you're fighting for for the children you know/work with/love, you need to extend these things to those who have already grown up. Pity is not appreciated, but some understanding would be. And for the love of all that is holy, AUTISM IS A SPECTRUM! I'm sick of the "oh, I'd never have guessed" response when my behavior needs to be justified through a diagnosis. I'm sick of fighting non-stop for my kid even harder than a "typical" spectrum kid's parents have to fight simply because he is gifted. People aren't "just a little bit" diabetic, so why would anyone think that someone would be "just a little bit" autistic? 

I'm going to go find a comfy place to sit for a while. I give up for now, but if I yank Johnny out of his activities to go home early, he will have a fit. It is only fair that I let him finish what I told him he could do. 

day one: #NAC17

So I'm attending the 17th National Autism Conference this week. My sessions for today included the Opening Keynote, Autism Research Updates, Legal Issues for Students with Autism Spectrum Disorder, and Recent Developments at the Behavior Analyst Certification.

Already it is off to a great start. We heard from Dr. Bridget Taylor who works with the Alpine Learning Group in New Jersey. Throughout the first session, Dr. Taylor walked through the history and progress in the world in regards to autism. As we all know, autism didn't magically pop up the year that people started to pay attention and take an interest in helping individuals who were autistic. However, it was interesting to hear some of the timeline and developments that have come along since the 60s. I don't know whether to think it is sad that the majority of changes in the world of autism awareness and understanding have happened only in the last 10 years, or be reassured that they're picking up the pace.

Throughout the session, we learned (and watched video clips) about the progress of one client that Dr. Taylor has worked with for a while. This girl, Jodi DiPiazza is now 11 years old and just really a cool chick. She has come a long way through her life so far, and I'm sure she will continue to grow in awesome ways. Check out this link to her performance (piano & vocal) with Katy Perry. 

The second session was hosted by Dr. Alice Kau. The updates in autism research were interesting, and she detailed the function and role of the Autism Centers of Excellence program (ACE). This program, consisting of both Centers and Networks, focus on research. There are 3 Centers and 8 Networks, tackling subjects from Multigenerational Families and Environmental Risks to the scientific reason as to why some people with autism are non-verbal. I had no idea the program existed, but it sounds like the work they are doing is going to contribute a lot to our understanding of autism over the next few years. 

My first afternoon session was hosted by Dr. Perry Zirkel of Lehigh University. With a look into the way Special Education works in my home state, I was psyched to sign up for it. Let me tell you, the session was invaluable. I was thrilled to get some help understanding what I can reasonably demand and what rights my kid has. I went out into a small group instead of staying in the large session for the first half. They said that I shouldn't be out with them because it was for people who already know the terminology... well I have a list of acronyms for that and I'm sure I'll be fine between previous experience and the rest of the conference this week. What I wanted were some small group interaction and answers. (Partially I was getting overwhelmed by the massive number of people in attendance, and I was happy to get a chance to break away from it all!) There were people there from multiple perspectives, (state workers, teachers, independent companies, and parents) and it was helpful to learn more about where to go to ask for help and what resources might be available to me. I took a lot of notes and I was happy to get a link to some of the documents he used during the presentation. He had quite a bit of question-and-answer time and addressed some of the issues I've been dealing with in terms of a brilliant kid with ASD. It was just a wonderful session!

I skipped the last session of the day because I was becoming overwhelmed, and honestly it was one I wasn't uber set upon. It was a time slot without any sessions that I thought would be particularly useful to me, and so I went to the exhibit room and looked around before heading back upstairs to pick up Johnny. He seemed to love his day there, and it was kind of nice to see him for lunch. (At the same time, I'm not looking forward to Wednesday when neither Ashleigh or Steve will be there to help me with him!!!) Anyway, after a bit of a fight to get him out of the room, we headed out the door. 

I'm anxious to see what tomorrow holds. For now, my brain feels over-stuffed with information and I have a killer migraine, so I'm going to try and relax a bit. Johnny has ended the day in a horrible mood and although I didn't deal with him all day, I need a break. Lucky for me, Aunt Lizzie is coming to take him for an hour or two! (My hero!)

musings of a mom

Can I sound more cheesy than to say that one of my favorite things to do in the world is watch the expressions change on my child's face? Watching how animated he can get and all of the extremely intense emotions that flow right through to the look on his face... I love watching my kid.

Scary creepy stalker mom, I know. But really, what I marvel at in times where I stop to watch him like that is the insanity that I helped create another human being. He's 4 and it still is as strange of a concept to me now as it was the day he was born. I made a tiny human. This bundled mixture of my husband and myself has turned into an entirely unique and amazing new person. 

Right now we are at Chick-fil-A and I am enjoying a few moments of peace while watching him in the play place through the huge glass window. He is having a blast, and I'm glad we finally have gotten to the point where I can sit out in the restaurant like all of the other parents of older kids and relax for a few moments instead of needing to be in there to help him maintain his temper. Sure he still sometimes gets upset if it is too loud in there or if some other kid is freaking out about having to leave, and when that happens I don't hesitate to step in and help him calm down, but today is a far cry from even 6 months ago bringing him to play with other kids. He still doesn't quite understand social convention, even on a preschool level, but with the other children he is interacting with moving so fluidly in and out of their prescribed 15 minutes and then off to home, there is no dealing with any one kid for more than a few minutes. Plus, he's got Mario. His "best bud" is slung over his back and journeying through all of the tunnels and slides with him. 

I've been excited that he has made such an attachment to his Mario plush backpack. He hasn't actually ever had a toy that he has clung to before this, and it is good to see him have some sort of safety/calming item aside from the blankets that he can't realistically take with him everywhere. Mario is very versatile. He can stick around, fine by me. Every kid should have a favorite toy. And even better, Johnny is extremely aware of Mario's safety, eating habits, potty breaks, nap times, need for sunscreen and sturdy shoes. When I ask if Mario needs something, (in reference to a real, tangible item) I am always informed that "It's just a-tend mommy, it's just a-tend." His seat belt in the car isn't pretend though, and I love that Johnny is so insistent about it, even if it takes me an extra minute or so when loading up the car. 

I wonder if I can throw Mario in the wash without ruining him?

intolerance

I know this is something that everyone has dealt with at one point in time in their life. Some people of various backgrounds, religions, races, and even political standing have dealt with intolerance more so than others. What I never though about until recently is how intolerance in others, especially when magnified by ignorance, would bother me so much more when aimed at my son than it ever has when aimed toward myself. If you know me, this is saying something. I am admittedly short tempered, and I have little patience for people who insult/slander/make fun of others for something that is a part of who they are.

When it comes to intolerance, (which might as well be permanently attached to the word ignorance, because let's face it: intolerant people are usually among the most ignorant of that which they mock) the question can be posed as to when to take a stand. This weekend, my son was made fun of. The comments took place in a situation entirely removed from him (he wasn't present) or the situation for which he was being mocked, and in a forum where it would have been quite drastic for me to talk back. I judged from (what I perceived to be) the reaction of those in attendance at the function that the comment was generally disregarded. No one was really paying attention to what the offender was saying, let alone seemed to take any stock in it. Regardless, I wanted to snap her neck. 

I know, harsh. Drastic, dramatic, over the top, exaggerated and quite ridiculous. 

Still, I was starting to see red. It was in fact the second time this person had said the exact same thing, only this time it was to a different audience. Channeling my inner chi, I kept my mouth shut. Why? Because no matter what I said in that instance, nothing would have been achieved. That person's mind wouldn't have been changed. The idiot wasn't going to listen to anything I had to say, (we have a history) and not only would it be wasting my breath, it would have been creating a scene that was unnecessary since no one seemed to care what had been said to begin with. It wasn't that they weren't compassionate people, it was that they honestly weren't interested in the mean comment, and to what I gathered, seemed to be ignoring everything the moron was saying to begin with. Since the event which I was attending was in this person's honor, I figured it wasn't the time to inform them (let alone everyone there) of the areas in which the person so obviously lacks knowledge. 

Breathe in 3, count out 6. Breathe in 3, count out 6. Happy place. 

I swear, if it happens again, I will most definitely inform the person not only of where they fall short, but of exactly where to stick it. 

But as I mentioned earlier, all of this begs the question of when it is appropriate to fight back and when you should hold your tongue. When do you inform the person who is being so rude that they are woefully in the wrong? How do you bestow upon them the knowledge of how they have offended, why it is offensive, and what they need to know about the person they just attacked? This is especially difficult when the person in question should already be aware of these things because of the relationship they hold to the poor guy they've made fun of. And is it asking too much (I am honestly wondering, not being at all sarcastic here) of family and close friends to read an article or two and educate themselves a little about something like my kid's autism? I mean, my grandma got on her Kindle and bought a book about "high functioning" autism in children. -- I hate the term "high functioning" by the way, but it seems the only way to get across to most people what I am talking about when referring to either myself or my son. -- She hasn't just been reading it, she has been asking me questions along the way and sharing parts of it that she has found especially helpful. I know that Steve's mom and oldest sister have read a few articles on it. I sent them links. With all of these "Autism Awareness" efforts going on in the world, you would think that people in close proximity to anyone with autism would be willing to become educated. Sadly, very few are. I've even had one person in my life quite literally say to me, "But you're not really autistic, right? I mean, you can sit here and have a normal conversation with me. It isn't like you can't function." The word spectrum seems to have no credence in my experience. If you're not, and I quote, "noticeably autistic" then you can't be all that different. You're just asking for attention then. You just want help with things that you really should be able to do. You just want your kid to sound unique or special. He's fine, really. It's no big deal.

Well, I'll agree with one thing: he is fine. There is nothing wrong with my son, or with myself. But really? The ignorance of some people. The ignorance and intolerance of far too many...

Breathe in 3, count out 6.

At least for now, my kid is blissfully ignorant himself. Innocence can hold him in his bubble for at least a little while longer...

face value

So for most people, when you tell them that something works the way it does within society, they may ask why, but they understand that they must adhere to it because "that is how it is". I know I've talked on Johnny's literal side before, but I thought I'd share the funniest experience we've had as a result of it.

About the time Johnny turned 3 1/2, Steve and I decided that physical boundaries (in terms of visual) needed to be put in place. He was old enough, and it was time for him to no longer encounter mommy undressed. From birth and having been nursed to walking in on me changing, it was never a problem but he was old enough to start following that social rule. He took this new rule with his typical question, "why?" and we explained that boys and girls have different parts to their body in some places, and that when you're no longer a little kid, you have to start making sure you give girls (or boys if the shoe was on the other foot) extra privacy. Surprisingly this wasn't met with 20 more "why?"s and we moved on with our day.

Not even a week later, I forgot my towel in my bedroom while showering. I usually hang it there to dry after I wash up, and had not remembered to bring it in with me again the following day. (Side note: Steve says I do this more days than not. That is probably true. I'm horribly forgetful when it comes to the small stuff.) When I was finished with my shower, I called out for Steve, who was to my luck at home and off work with us that day, do bring me my towel. Not thinking anything of it, he went and grabbed it and opened the bathroom door. I was still behind the shower curtain, unexposed, but I heard Johnny starting to follow him. 

"DADDY! YOU CAN'T SEE MOMMY WITHOUT HER CLOTHES ON! IT'S THE RULE!" 

Coughing on our own laughs, Steve and I (me still hidden) began to explain the difference. Boys and girls who are married are allowed to see eachother not dressed. I won't go into why that isn't the most accurate statement once a certain age is reached, but I have a slight curiosity as to whether or not he will be a kid who sticks to the rules when he gets older in regards to that one. 

"Okay." No questions asked.

Wait for it... 

2 minutes later as he is working his way back down stairs, (and I am out of the shower and securely wrapped up, headed for my bedroom) Johnny's mental wheels have turned for long enough for his rational side to make yet another observation. "Then I can see Christy without her clothes on! We're married!"

Now, he's been claiming to be married to my sister for over a year now. We all go along with it because it is cute and he loves her. However, nothing could have prepared me for this awesome bit of ammunition for his future 13-year-old self. He was absolutely right; based on what we had told him, he could see Christy without her clothes on. 

We proceeded to amend the rule, (yes, still not entirely accurate) telling him that mommies and daddies are allowed to see each other undressed, but he can't see Christy without her clothes on. He didn't quite buy it, so I just told him that Christy wouldn't be comfortable with it and he shrugged before moving on with his day.

Conversation over. No big.

Less than a week later, Christy came in from Pittsburgh to visit, and as she was sticking around for a few days, she bounced between friends and family's houses. She came over one morning to hang out and went ahead and took her shower at our place. I thought nothing of it.

I was in the middle of a meeting with Erin and Ashleigh, the new behavioral specialist and TSS. I wasn't paying complete attention to Johnny while he was playing, and neither was Steve from the other room. Johnny was just sort of meandering between the kitchen (Steve) and the living room (me). Then all of the sudden, I hear him working his way up the stairs toward the bedrooms and our bathroom. "Steve! Make sure he isn't trying to go into the bathroom!!!" Thankfully, she had locked the door as I often forget to do myself. Johnny only knocked on the door, but I was relieved nonetheless. 

There was no more talk of personal visual boundaries until this past weekend. Friends of mine had come to town to visit for the weekend. We hadn't seen them since Johnny was about 2 1/2, so he didn't remember the couple. The first thing he asked my friend Kevin is who his sister was? Kevin explained that Claire was not his sister, but rather his wife. Johnny's response?

"YOU CAN SEE EACH OTHER WITHOUT YOUR CLOTHES ON!" 

Without a context, this was an even funnier proclamation. Yes, yes they could. And I somehow have a feeling that we will have quite a few more of these entertaining moments of enlightenment as we interact with other couples. 

blogging & choices

Turns out, I'm not the most optimistic person in the world. Well, I already knew that. As a result, I'm not the most optimistic blogger in the world. Makes sense, plus I know my blog has often been a place for me to rant about what is going on in my life.

Does this make for the best read? No. 

Does this make me sound whiny sometimes? Absolutely. 

Does it bother me? Not so much. 

And I'll tell you why; I didn't start out this blog with an audience. I fired up the computer (okay, iPad) and started essentially journaling in a public forum. -- A public forum that I hadn't actually let anyone in my life know about. Still now, only my husband and a close friend in South Korea know it exists. To my knowledge. They're the only ones who have asked, so they are the only ones I have sent the link to. I don't think pretty much anyone else in my life knows I blog anymore. Yet, I have a following of around 1,000 people. 

For the first two years of Johnny's life, I blogged at a decreasingly steady rate. I started a few weeks before he was born, and finally called it quits around the time he turned 2. The people in my life were constantly asking for updates on the kid, and it was easier than blasting them with emails. With a blog, they could catch up when they wanted to or ignore it altogether. I came to realize that they had moved toward that "ignore it" option, and since Johnny was beginning to exhibit some of the issues we are dealing with today, it was easier to just stop and focus on the kid. Now, 2 years later, I'm back at it for a totally different purpose: I need my own "calm down" time. I need a sounding board (that doesn't respond in resounding condescension, though I don't have any opposition to comments and questions) where I could both return to my passion of writing and talk things out with myself. 

I'm one of those people that process events in their life much better by voicing it. 

I think what bothers me most about discussing some of these things with people who are a part of my life but not actively involved is that I am either judged or dismissed as exaggerating. Yes, I have a side to me that exaggerates sometimes, but that is usually about the size of the line at the checkout or the intensity of a movie. When I say that I can't leave my kid with a normal sitter, I'm not blowing things out of proportion. I can't. I have a very small list of people who I trust can not only handle my kid, but be a positive source of help and lovingly correct him when he is doing something he shouldn't, working to guide him in the right direction. When someone doesn't understand my son, they just deal with him the way they would any other child. You can't do that with Johnny -- it is not simply a bad idea that causes more tantrums and meltdowns, it can be damaging to him. When I think of how adults treated me when I was a child, I can easily see how they had a huge affect over my self esteem. When you're always being told that you're bad or in constant trouble for something, it is hard to think you're worth squat. 

One of the biggest challenges in my life is also my most important goal: I will not treat my son the way I was treated as a child. While it is something you might think would come naturally because I am hyper-aware of the issue, it is still a struggle when I'm so used to being handled in that way. It is also sometimes hard to remind myself not to dismiss his actions as "bad" without looking at the root cause when I'm physically tired and turning into a puddle of mental exhaustion. I do make sure I always do one thing though, and it hasn't been hard to make this adaptation to typical parenting: I do not tell my child he has been bad. I do not tell my child he has been good. I make sure my son knows when he has been making good or bad choices. Because he isn't a bad kid. As with all kids, (and people in general) his actions come from a specific part of his interpretation of life, be it accurate or not. It should be kept in mind that while bad choices are easily pointed out, the good choices a kid makes need to be acknowledged as well. 

Did you make good choices today? 

hugs & kisses

I've known a lot of sweet kids in my life. Snuggle bugs, kids that always want everyone to be happy, kids that smile non-stop... but nothing could have prepared me for the way I feel when my own little guy wants to "fix it" for me.

I guess it makes sense that after countless times that I have tried to convince him that all of his troubles can be solved with a hug and a kiss, (I mean, come on, at this age it is a good philosophy!)  he would start to believe it. "You don't feel good, mommy? Don't worry, I'll make you all better." Hug, hug, hug, hug, hug (in rapid succession so I'm being patted on the back with both arms around me amidst tight squeezes) and kiss, kiss, kiss, kiss, kiss. "There! You are feeling better, you just forgot!" -- That's one of his favorite things to say when he thinks his father or I was wrong and need to change our minds about something; "you forgot". Couple that with "you didn't know" (another favorite when he thinks we are woefully ignorant about something of great importance) and you've mastered his two main phrases. 

Whether it is because I am depressed, my chronic back pain is worse, or I stubbed my toe, Johnny is always there to fix me. While his efforts don't make a lick of difference in relation to the root cause of why I am upset, they are my favorite aspect of being his mom. Somehow, with the grace of God, I have given birth to the boy in possession of the biggest heart in the world. 

Yesterday I very suddenly became violently ill. I'll spare you the details, but suffice it to say that I haven't been that sick since I went out on the town for my sister's 21st birthday party and forgot that I had taken a benzo when I'd been overwhelmed in a crowded restaurant at dinner. Bad mix. "Mommy, you forgot." -- Anyway, the whole evening (and so far today) all I could think about was how much better I would feel if I could only have my little man hold me for a moment and kiss away the pain. I'd still be sick, but I crave that overwhelming feeling of love that he radiates. Aren't we as parents supposed to kiss away the pain our children experience? How did he take on that role? 

Don't get me wrong, I give plenty hugs and kisses to my son and spend hours rocking and holding him when he is upset. I do everything I can to help him calm down and whatever is possible to make him feel better. But still, I am in awe of the fact that he has so totally mastered that skill at the age of 4. The otherwise on-the-go kid will slow down and snuggle for an hour if I'm having a rough day. If my back hurts, he tells me he will crack it for me like the doctor because he is going to make me feel better. His little hands suddenly find their way to my back while I sit there, allowing him to press as hard as he can (a gentle nudge, honestly) and then break into a big grin at what a good job he did. While I feel utterly helpless in the moments where I can't take away his pain, he is completely confident in his ability to make a difference in my wellbeing. 

I wish I wasn't possibly contagious. I could really use some Johnny right now.