Friday, June 21, 2013

Some People Are Just Assholes

Wow... Some people, I swear. I fight for Autism Education, and light into someone who thinks that the diagnosis of Autism is "Bullshit", and I get reamed because I attempt to point out that perhaps said person should ask the parents who have to fight with insurance companies, school officials, have to leave a grocery store or a restaurant because of a meltdown, whether or not Autism is an actual disorder or not. Now apparently I'm a bigoted asshole, because I dare to say someone has a lack of empathy for these parents to someone who until just now has never made mention of his Autistic status? BS. Autistic or not, you're still acting like a spoiled brat with mommy issues. Believe me, I understand the difficulties. And if these recent news reports about parents and caregivers killing their Autistic children are upsetting to you, you're not the only one. I'm upset by them too. HOWEVER... They are not the norm. And to lump us all as "Monster parents who forget that Autism isn't about them." is a pretty serious accusation. If you have issues with how your parents treated you, take it up with them. But to say, "Ooh, poor parents, Fuck them... it's not about them." only shows just how angsty you really are. You come off as a 15 year old. Certainly not the autistic parent of three non-autistics who was raised by an aunt with neuro issues of her own and an autistic cousin... ::brain implodes a bit:: I wonder ( /endsarcasm) where all of that anger comes from? IF your story is true, and I say IF, then perhaps you have deeper issues than just autism. 

The facts remain the same. Autism isn't JUST about one person. It affects the ENTIRE family... especially when that family is a close family unit. These parents who do anything and everything they can to make the world a little bit less stressful for their children DO DESERVE to have some empathy. Hell, I'll say it.. We deserve a little sympathy too. And every so often, we deserve to have someone pick up the pieces for the night and say, "You deserve some time to yourself." If that makes me a selfish, horrible, monster of a parent, then so be it. I guess I'm a selfish, horrible monster of a parent, because I spend 23/7 thinking about my son, who has autism, and the effects his autism will have on him, and his neurotypical brother throughout their lives. I spend that 23/7 trying to advocate for better services, better insurance coverage, less political crap in our medical issues, attempting to educated the public about autistic behaviors that they may not understand, to help make the world more autism friendly so that other parents, like myself and my husband can feel confident taking their children out to a restaurant or a movie theater without fear of some ignorant jackass making a scene, or throwing us out because Malcolm decides to stim during desert, or through the opening credits. That one hour that I left out... I spend trying to squeeze in a shower, eat something that isn't part of Malcolm's typical 'yellow diet' routine, or I don't know, have a conversation with my husband that isn't autism/child related. 

So go ahead. Judge me, if it makes you feel better about your lack of whatever it is that has you so freakin' angry. I will tell you the same thing I tell my son though. Autism or not.... you do not get a free pass to be an asshole.

Friday, June 14, 2013

What The Hell Is Wrong People???

Alex Spourdalakis' mother, godmother charged with 

first degree murder: Police


Do I understand the desperation, isolation and frustration that Autism creates? You betcha! We deal with these 'side effects' of autism EVERY day! HOWEVER!.... NEVER has my brain questioned whether or not KILLING MY CHILD would be the appropriate way to handle my own stress. NEVER have I endured a 3 meltdown in 5 hours, been punched in the face, kicked, spit on, yelled at, or watched as some expensive item in my living room shatters and thought, "A kitchen knife could fix this." Okay... it's taken me a couple of days to process my thoughts about this. They don't vary much from my initial reaction upon reading this story though.... So many people are so eager to jump up and defend and excuse these two women. "Ooh, no one understands how difficult Autism can be." or "The system failed them." 


Guess what? The system DOES work... if you do your part! These two women CLEARLY gave up on this boy. They gave up on themselves. There ARE resources out there, and I find it incredibly difficult to believe that they were handed the diagnosis and then sent on their way without ANY of these services and resources HANDED to them. Matthew and I left that particular doctor's appointment with our arms FULL of booklets, info packets, pamphlets, business cards, and more! Our job as an Autistic Child's parent and advocate does not end with the diagnosis!!! And clearly, she had enough of a voice to question whether medicating him with psychotropic drugs was appropriate for him. 


The fact of the matter is this. Did the system fail her? It's possible. But who failed Alex? Stop crying about how tough SHE had it. Yeah, like I said, it's HARD! But imagine what this young boy was going through! I'm certain it didn't scratch the surface of HER stress. And here's the thing.. If she were truly justified in her actions. If she even FELT justified in her actions, why did she, and the Godmother, attempt suicide right afterwards? Most people, who are steadfast in their convictions.. don't run away and hide after acting upon them. They are clearly, two cowards who deserve everything they are going through now. THEY failed this child. Not his doctors. Not the government. Not any other 'They' that people want to throw out there in an attempt to prove that the system is broken. 


Someone, on another page said, "DO NOT FORGET WHO IS ULTIMATELY RESPONSIBLE" then concluded with "Hint: It is not his mother." 


Seriously?


As his number one advocate, it wasn't the responsibility of the medical community at large to take care of him or his needs, it was HERS. If she felt they weren't listening, there ARE services out there, ACROSS America, that can help with that! Believe me, I understand the desperation and the isolation that she faced. I face it too. And I reach out for help. As hard as it is sometimes, I ASK for help when I am reaching my limit. I didn't HAVE a support group in my area, where I could connect with other Autism parents. So what did I do? I MADE one! No, it's not an easy road, Autism. It's a scary, ugly, lonely road. You doubt yourself as a parent, as a friend, as a wife/husband, as a human being. Regularly. Relationships suffer because of Autism. Self esteem and self care suffer because of Autism.


My point is... When does it STOP being everyone else's responsibility to take care of Alex? When does it become Mom's responsibility? She GOT the diagnosis. Is that where she believes her responsibility in all of this ended? She was able to use her voice and advocate her dislike of using medications to contain his behavior? Where was this voice when these other services and providers 'failed' her? 


And that is the key for me. They failed HER. Well.. WHO failed Alex? If she was unable to cope... and she gave up... that isn't the fault of his doctor's, or CPS, or whatever other 'They' everyone is trying to blame. THAT particular fault, lies solely upon the two who executed this child. THEY GAVE UP ON THE CHILD. THEY FAILED HIM. So absolutely, yes... DO NOT FORGET WHO IS ULTIMATELY RESPONSIBLE for what happened to him...


Hint: They wiped the knife they used to stab him with before taking a handful of pills to medicate and wipe their guilt away.

Friday, May 31, 2013

Is it October Yet? AKA: When Do The Back To School Sales Start?

So, I had the absolute privilege, and utter joy of reading this amazing blog, that pretty much described, to a TEE, my life as a mom of a school aged child, for the last four weeks or so of the school year. It was pretty amazing. Funny, most definitely. But beyond that, there was an amazing level of truth, that most mom's will never admit to. Who wants to be known as that mom that isn't perfect. To a Stepford level of perfect. Afterall, isn't that what we're suppose to strive for? I -DO- know a mom or two like this. Parenting, now that they're almost done with the whole 'raising' part of it, has taken on that notorious rose colored, nostalgic, afterglow that seems to come with the whole, "Aaah, we're almost done." They suddenly remember, with fondness, that time Jr. 'asserted himself with respect in the middle of the grocery store'. (I.E: What other parents call a full blown temper tantrum.) or how they displayed their God-given talent by painting on their bedroom wall. (With poop.) Yeah.. funny how becoming a parent of a grown child messes with the memory like that. It's about as annoying as these same people telling us, "Enjoy every minute, they grow up so fast." No. No I won't ENJOY cleaning up poop, or a public tantrum. Not every moment of parenting is a Joy.

But I digress...Go ahead and take a peek. I'll wait.......


Pretty awesome, yeah?

 The point (today) is... TODAY IS THE LAST DAY OF SCHOOL....
and I'm not afraid to admit... I'm terrified. Because unlike the stepfords who cry about how happy they are about this event, none of them must face the coming battle that is bound to ensue on Monday. The dreaded....

Change In Routine

Yeah.. this pretty much sums it up right now.

Now, this isn't to say that we won't have some great moments, make some even greater memories, and have loads of fun. But seriously, who can smile for 90 straight days, while sitting in 95 degree weather with 99% humidity, at the splash pad park, and respond with complete and utter joy to the 836 billionth "Look at me, Mom!"?? If you can, Kudos. This page, and this post, isn't for you. "Super moms who do everything perfect" is three blogs down. I'm talking about REAL women. REAL men. Who have limits. Who require respite. Who are honest with themselves and realize, that the time spent away at school, is about the only breather we get sometimes. And on this last day of school, the only REAL thought coursing through our panicking minds is, "What the hell am I going to do on Monday!?"
Yeah, I use this photo a lot these days to attempt to convey just how overloaded and thinly spread I am. Sadly, it doesn't seem to get the message across to a lot of people. 
So, of course, I couldn't ask that my child sleep until the alarm clock go off. He hasn't since last Oct. What made me think he would today? But in my chronic state of perpetual hope (that's what's I'm calling my state of delusion today...) I continue to tell myself, "Maybe tomorrow." I swear the last thing I hear before the boys nod off is giggling. Always giggling. Anyway.. 

Yes, there will be many trips to the splash pad park. And to the nature trails. And to any other place in town we can think of to get them out of the house, to burn off some excess energy, and give Mom and/or Dad some time away from our chaotic little cave.  But let's face it. It's a small town we live in. And the activities around here... well, they're in a small town. 

Not OUR small town... but pretty darn close.
And here we are. 6:30 in the morning. The alarm clock STILL hasn't gone off, since, it's not set to for another 45 minutes. BOTH of the boys are up, and incredibly... awake. Clifford the Big Red Dog is on the TV, and Malcolm is seemingly oblivious to the fact that today, is the last day of his established routine, and what little peace we had in our little cave. Monday, he will get up at the butt-crack of down, as usual, and demand "I need my PBS Kids dot org!" and look for the pile of clothes he is supposed to put on for the day. And when he doesn't find them, because quite frankly, I'm not opposed to a lazy day in our jammies, He's going to be mad. But the nuclear fallout will occur when, at 8:50, the bus doesn't arrive. That will be about the time I decide that a summer-time, alcoholic glutton doesn't seem like all that bad a career path. 

I could think of worse things to take the edge off!
So, at a quarter to 7 in the morning, and I'm already attempting to make a game plan for this afternoon. For 3:31pm, to be precise. I'm pretty sure, my first course of action will be:

Even Ned Stark was afraid of summer. Afterall, he is a Winter!
Pretty accurate.
After that.. who the hell knows? Begin a slow and methodical countdown until Oct. 12 sounds like a good plan. Write a song about it, perhaps. Start a petition, and a public campaign to implement a year round school program, at least for those of us who have routine depend kiddos? I don't suppose earbuds, LOUD Glee music and World of Warcraft would be considered 'good parenting'. That really is a bummer. ;) I suppose I will have to entertain myself, at least during their waking hours with daydreams of Oct. 12. It will have to suffice. But damn... won't that party be epic!!!


And on Oct 12, I WILL have my husband take a photo of me and Malcolm waiting for the school bus. 




To Parents of Small Children: Let Me Be the One Who Says It Out Loud. By: Steve Wiens

I had the privilege of reading this just a bit ago, and while it made me giggle, it also made nod. A lot. And cry. Because we experience this SO.VERY.OFTEN. Thank you, Steve, for putting our emotions, and our struggles into such clear and precise words.


I am in a season of my life right now where I feel bone-tired almost all of the time. Ragged, how-am-I-going-to-make-it-to-the-end-of-the-day, eyes burning exhausted. 
I have three boys ages 5 and under. I'm not complaining about that. Well, maybe I am a little bit. But I know that there are people who would give anything for a house full of laughter and chaos. I was that person for years and years; the pain of infertility is stabbing and throbbing and constant. I remember allowing hope to rise and then seeing it crash all around me, month after month, for seven years. I am working on another post about infertility that will come at a later date. 
But right now, in my actual life, I have three boys ages 5 and under. There are many moments where they are utterly delightful, like last week, when Isaac told my sister-in-law that, "My daddy has hair all over." Or when Elijah put a green washcloth over his chin and cheeks, and proudly declared, "Daddy! I have a beard just like you!" Or when Ben sneaks downstairs in the morning before the other boys do, smiles at me, and says, "Daddy and Ben time." 
But there are also many moments when I have no idea how I'm going to make it until their bedtime. The constant demands, the needs and the fighting are fingernails across the chalkboard every single day. 
One of my children is for sure going to be the next Steve Jobs. I now have immense empathy for his parents. He has a precise vision of what he wants -- exactly that way and no other way. Sometimes, it's the way his plate needs to be centered exactly to his chair, or how his socks go on, or exactly how the picture of the pink dolphin needs to look -- with brave eyes, not sad eyes, daddy! He is a laser beam, and he is not satisfied until it's exactly right. 
I have to confess that sometimes, the sound of his screaming drives me to hide in the pantry. And I will neither confirm nor deny that while in there, I compulsively eat chips and/or dark chocolate. 
There are people who say this to me: 
"You should enjoy every moment now! They grow up so fast!" 
I usually smile and give some sort of guffaw, but inside, I secretly want to hold them under water. Just for a minute or so. Just until they panic a little. 
If you have friends with small children -- especially if your children are now teenagers or if they're grown -- please vow to me right now that you will never say this to them. Not because it's not true, but because it really, really doesn't help. 
We know it's true that they grow up too fast. But feeling like I have to enjoy every moment doesn't feel like a gift, it feels like one more thing that is impossible to do, and right now, that list is way too long. Not every moment is enjoyable as a parent; it wasn't for you, and it isn't for me. You just have obviously forgotten. I can forgive you for that. But if you tell me to enjoy every moment one more time, I will need to break up with you. 
If you are a parent of small children, you know that there are moments of spectacular delight, and you can't believe you get to be around these little people. 
But let me be the one who says the following things out loud: 
You are not a terrible parent if you can't figure out a way for your children to eat as healthy as your friend's children do. She's obviously using a bizarre and probably illegal form of hypnotism. 
You are not a terrible parent if you yell at your kids sometimes. You have little dictators living in your house. If someone else talked to you like that, they'd be put in prison. 
You are not a terrible parent if you can't figure out how to calmly give them appropriate consequences in real time for every single act of terrorism that they so creatively devise. 
You are not a terrible parent if you'd rather be at work. 
You are not a terrible parent if you just can't wait for them to go to bed. 
You are not a terrible parent if the sound of their voices sometimes makes you want to drink and never stop. 
You're not a terrible parent. 
You're an actual parent with limits. You cannot do it all. We all need to admit that one of the casualties specific to our information saturated culture is that we have sky-scraper standards for parenting, where we feel like we're failing horribly if we feed our children chicken nuggets and we let them watch TV in the morning. 
One of the reasons we are so exhausted is that we are oversaturated with information about the kind of parents we should be. 
So, maybe it's time to stop reading the blogs that tell you how to raise the next president who knows how to read when she's 3 and who cooks, not only eats, her vegetables. Maybe it's time to embrace being the kind of parent who says sorry when you yell. Who models what it's like to take time for yourself. Who asks God to help you to be a better version of the person that you actually are, not for more strength to be an ideal parent. 
So, the next time you see your friends with small children with that foggy and desperate look in their eyes, order them a pizza and send it to their house that night. Volunteer to take their kids for a few hours so they can be alone in their own house and have sex when they're not so tired, for heaven's sake. Put your hand on their shoulder, look them in the eyes, and tell them that they're doing a good job. Just don't freak out if they start weeping uncontrollably. Most of the time, we feel like we're botching the whole deal and our kids will turn into horrible criminals who hate us and will never want to be around us when they're older.
You're bone-tired. I'm not sure when it's going to get better. Today might be a good day or it might be the day that you lost it in a way that surprised even yourself. 
Breathe in. Breathe out. 
You're not alone.

Wednesday, May 29, 2013

Over Tired, Over Stressed and Over It


Yeah. The above graphic pretty much describes the last three days for me. No profound words of wisdom, witty tidbits of advice or even a heartfelt dedication to those who struggle and rise to the top. This is just about me. A human being, on the brink of  losing her mind. At least that's how it feels right now. And it seems, no matter who I talk to, no matter how I plea for help, I continue to bang my head up against a brick wall. 

Let me attempt to explain the inner workings of my brain. 

There are a few things in this world that make my brain jump to hyper-speed level thinking and over working. Silence as a response. Being ignored. Being mocked. And lately, Too much noise. 
But right now... the levels of irritation that I feel when faced with those is NOTHING compared to the utter hopelessness and despondency I feel when faced with all of these things, on top of being just utterly and completely exhausted. I'm not talking about your everyday, run-of-the-mill "Oh man, I only got four hours of sleep last night." or "I shouldn't have stayed up so late." exhausted. I'm talking about that exhaustion that comes from months, or sometimes years, of interrupted sleep, chronic worrying and obsessing, and constant amounts of high level stress. You know, the type that causes Post Traumatic Stress. Don't believe me? Ask ANY special needs parent.. Or read the following article: Autism Moms Have Stress Similar To Combat Soldiers. Pretty scary stuff, right? 

This past weekend, a three day weekend for most, was particularly stressful. One more week of school left. Most wonder why I'm so stressed about it. See, with our son, waking up Monday through Friday, getting dressed, eating breakfast, brushing hair and teeth, and playing with Hot Wheels until the bus comes, has become our standard routine. A very IMPORTANT routine. This routine is now about to change. He won't get on the bus. He won't see his friends, or his teacher. He has no break, away from a little brother who idolizes him, and wants to hang all over him. And we, his parents, have no break from Autism. Until August 31st, when school is back in session.

Okay. Let's get one thing straight. Yes. I fight for awareness and education. It HAS become my passion. I will say that, gladly, and whole-heartedly, everyday, until the day I die. However. I am also human. Just a girl, who every once and again, needs to FEEL like a girl. Who needs to feel like what she's doing, and what she's done, matters. And has made a difference. Believe me, I appreciate all of the kind words, and sentiments. "I don't know how you do it!" "You're an awesome mom!" "You're an amazing woman, and a powerful Autism Warrior." Sometimes... "Do you need anything?", "How are you feeling?" or "What can I do?" is MORE than enough. Sometimes, it's the only thing that makes me feel better. I am not altogether comfortable with the "Autism Warrior" or "Awesome Mom" title. I feel like, what I'm doing, what I do, is nothing any other parent would do. I know, not all special needs parents advocate. Or Mentor. Or start their own support group. Not all parents are called to do that. I was. And I know, I bring most of my stress on myself. Because I strive to be perfect in everything I do. And I often come up short. I have huge dreams for myself, and my children. And most often times, they go unfulfilled. But I forge ahead, hoping to teach my children that if you continue fighting, and working, for the things you want, they WILL happen. 

However, this week, it looks like a new lesson plan is needed. Sometimes, you HAVE to ask for help. That's it. That's the lesson. However, in putting my proverbial money, where my mouth is, I've come to realize a couple of things. See, I've ALWAYS been labeled the 'melodramatic' one. That particular moniker dates back to before I can remember. "Stop being so..." "You're being..." You get the picture. Point? I'm not BEING anything. I just happen to feel. Everything. A lot. Sometimes, too much. So much, in fact, that it's overwhelming at times. And if I bottle it up, or push it down, and pretend it's not there, it's bad for everyone. That includes you. But the same people who roll their eyes and whisper about how over the top, or melodramatic I am, are the same people who ignore my flat-line pleas for help. 

"I'm so exhausted, I overslept and missed an IEP meeting."
"Oh tell me about it... I ran out of milk for my coffee.. I'm so stressed out." 

"I'm stressing out about summer break."
"Oh, I don't know why. I always love summer break. All my kids are home, It's great fun!"

"I haven't slept for more than 4 hours in the last 3 days, can't remember when I showered last, and still haven't been to the grocery store this week."
"I can relate! A dog pooped on my carpet. I need a vacation desperately." 

Seriously? 

Screw you too.

Do I sound angry? Bitter? Hateful? Good. It was supposed to come across that way. The fact of the matter is this... Unless you are raising, or have raised, a special needs child, you CAN'T relate. And your little idioms about how much you MISS, or ADORE the chaos in YOUR house, does NOT comfort those of us dealing with an entirely different breed of chaos and stress.

I realize this is long. And it's rather rambling. But this is just another facet of how my brain works. THIS is why I don't sleep anymore. Because one thought... Turns into 30...turns into 120... etc etc... So, to keep those thoughts at a relative calm, I occupy myself with mindless tv, Facebook, and World of Warcraft at 3am. No. It's not wise. It's probably not even healthy. But what are my options? Drinking 4 pots of coffee, while taking six bottle of antidepressants with a bottle of wine? Because I'm thinking that's the ONLY way right now, to curb the constant exhaustion and mood swings. 

So here it is... all laid out for the world to see. I'm not perfect. I'm not a super-mom. Hell, sometimes, I don't even feel like a GOOD mom. There are even days when I feel like, "They're still breathing, and nothing got broke today. I did my job." And yes... sometimes... I need a break. A break that doesn't come very often. And sometimes, I just need to be reminded that someone, ANYONE, appreciates what I do everyday. Even if it's just slapping together a peanut butter sandwich and mixing a cup of chocolate milk, to deter the inevitable meltdown for just 10 more minutes. 



Sunday, May 26, 2013

10 Years is Coming Up Fast!

Hard to believe that in just a couple of years, Matthew and I will be celebrating 10 years of marriage together. Quite the accomplishment, these days. But it doesn't end there. We will have actually been together, a solid couple, for 16 years! I'm pretty proud of that too.

So yeah, it's not taking place until June of 2016. But you know what? I'm a planner. That's what I do. Plan. And I'm not afraid to admit, I can be anal about details. If I enter into something, without feeling confident about the details, I panic. Big time. So... I'm checking out bridal fashion. I'm checking out venues. DJ's, Flowers, Cakes, all of the typical bridal fanfare. Why? Because, the ONE economy on this planet that has remained relatively stable, is the bridal economy. In three years, the cost of weddings isn't going to jump dramatically. And for the most part, neither are the trends. And let's face it. Chocolate cake will ALWAYS be in fashion. So... in order to put together a realistic budget, I am window shopping NOW. It gives us more time to figure it out. To save. And to pay for things, so that the cost doesn't kick our asses a month before the event.

So yeah. Scoff and laugh, and ask "Why are you doing this NOW?" That's why! Not that I have to explain it to you. But hey.. Never let it be said I wasn't willing to explain things.. in full detail, with a touch of attitude and snark to boot. Just so that we're on the same page, and there are no misunderstanding. ;)

Saturday, May 18, 2013

A Blast From the Past

So, I was looking through some of my older files, looking for something in particular, actually, when I happened upon this. A manifesto, of sorts, that I had written in July 20, 2012. Almost a year ago. And my, how some things have changed. And even more, how some things have stayed the same. Sleep deprivation, lack of respite, Tag-team parenting.. Are still a big norm in our household these days. But it was shortly after this disaster, that my heart was touched in a way, that has changed our family forever. Advocacy, Mentoring, and Service for those struggling with Autism has been placed upon me, and in that almost year since this writing, amazing things have begun to happen!! MALS Place is up and running, and starting to grow. Already, we have groups interested in sponsoring and donating to our group. I have been asked to sit in on parent panels, that speak with our local and state governments, to take part in regional cadre meetings and classes, to become a Parent Mentor through Easter Seals ARC, And just recently, I was contacted by Autism Speaks, and invited to be on their Fort Wayne Walk's planning committee!

I can't win every battle I fight. I'm not naive enough to believe that. But, if I don't at least fight... I won't win ANY of them!

--------------------------------------------------------------------------

It has been an especially trying week in the Dennis household. Between the heat and the humidity, a bout of Autism-induced insomnia, lack of sleep on Mommy and Daddy's part, and just the everyday stresses of raising two young boys, Yesterday's disaster, put my husband and I into a tailspin, to say the least.

Matthew is working very early morning hours at FedEx, having to get up at 2:30 in the morning, and coming home anywhere between 7 and 8:30 in the morning, depending on their workload. Yesterday morning (Thurs. July 19) he was especially tired, having not slept very well the night before. As for myself, I had been up all evening with Malcolm, who, as I said, was suffering from some Autism-induced insomnia. Of course, our two year old, Jace, snored happily away. Anyway, After Matthew, my husband, came home, we were both pretty exhausted, and about 10am, we decided we would put the boys in our room, turn on a movie for them, turn the lights all out, and declare a 'Family Nap Time'. After some fussing, the boys finally quieted down. The next thing I knew, I heard my husband, from the living room, yelling out, "Oh my God... Oh my God..." It took me a moment to realize, I was awake, and that I wasn't dreaming. When I trudged out to the living room, I stood there in disbelief. Malcolm figured out how to unlock our bedroom door. 

The night before, we'd made popcorn. In the midst of the insomnia, lack of sleep and frustration, we'd left the popcorn bowl on the dinner table. That was now empty. It appeared as if someone forgot to put the lid on the popcorn popper. It was everywhere. Mixed in, were these multi-colored flecks, that didn't register at first. Until my eyes focused on the back of the dinner table. There was our fish tank. Half full. Popcorn (with extra butter) floating in the water. The water, by the way, which I had just changed two days earlier, now looked like skim milk. And there was Goldie, our goldfish, floating at the top. Liberty, our Beta, was MIA at the moment. Matthew and I went into instant "parent panic". "We'll deal with the boys later. First, we gotta find that fish..." So.. the search and rescue began. It was a couple of minutes, but I found him, next to the tank. I yelled out "I got him! Get a bowl!" scooped him up, and ran after my husband, into the kitchen, who was promptly bringing the faucet to temp, so that we could attempt to rescue this poor creature. Finally, dropping him into the bowl, we waited for what seemed like forever, before he finally fluttered about, and began swimming. Whew. Only one fish lost. 

Then the clean up began. It took us several hours to FIND all of the pieces of our tank, to sift through the tank rock (the multi colored specks I spoke of earlier), the popcorn, carpet threads and other debris that the kids had managed to leave in their wake. 

It was time to start dinner when we finally finished the last of the clean up. My nerves and my sanity were frayed. Matthew was not far behind. The boys had been relegated to opposite ends of the house. (Less clean up is needed when they're separated. Apparently, in the field of demolition, they make one heck of a team.) By the end of the night, the boys were in bed, looking deceptively peaceful, my husband was heading to bed, and my brain was in overdrive. I sat down at my computer, tried to distract myself with some mindless entertainment (Reruns of Glee.) And without thinking, or even realizing I was ABOUT to, I just looked up and asked, "What is it, you're trying to make me understand? Please?" I was then compelled to open up Google. "Okay... What am I looking up?" And without thinking, I typed in, "Bible Verses for Autism". The same verse kept appearing. Entry after entry. Matthew 25:31-46. I didn't get it at first. I had to read it 4 or 5 times. Finally, I just looked up, put my hands in my lap and said, "Okay God. I appreciate your faith in me. But please do not compare me to Job tonight. I do not have near his patience on a good day. Just this once, treat me like the idiot child, and just... give me the simple version." 

I read the verse one more time, and it was as if someone had come by with the cliff notes version, or drew pictures for me. I couldn't believe the sudden understanding that happened in my brain. So fast, so sudden, that all I could do, was begin writing. (That's what I do. I write.)

-----------------------------------
“Disabled children are a blessing”

It is something that we have all heard; even long before we were parents of disabled children. It usually is offered in a way that makes it seem like if you have a disabled child, you also have some indefinable, magical fairy dust kind of ‘blessing’ where an angel waves his hand and, poof, you are blessed.

Once you become the parent of a disabled child, you begin to see what that ‘blessing’ really means in concrete terms, because one of the first things that happens to you, in your early grief, is that you become grounded. All of the trivial distractions, the petty rivalries, the BS ego trips, the vain ambitions and the frivolities of life suddenly become very unimportant. The crap in your life starts to fall away and it is replaced by seriousness about things of true value.

Diagnosis brings with it a choice, to continue to serve yourself, or to take a hard look at your life and begin making greater and greater sacrifices for the wellbeing of your child. Because we love our children, very few of us choose the former.

In light of Matthew 25, this is the blessing of the autistic child. God eases you into falling in love with the Least of These, just like He is, so that when diagnosis comes, the choice to serve them is automatic.

For our children’s welfare, parents in our community give up their careers, their houses, their retirement, their health, their relationships, their free time, their dreams, their pride and a hundred other things that typical parents ‘get’ to hold on to. When we discuss the sacrifices that parents make, it is usually from the perspective that parents are losing out on the better life that should have been theirs.

Making this even more painful, some of these families will turn their lives upside down for children who may not ever ‘get better’ or live independent lives or even be able to acknowledge their parents at all. Some fathers will never be greeted with excitement by their child when they come home from work. Some mothers will never hear, “I love you, Mom.”

But Matthew 25 puts this phenomenon in a whole different light. What Jesus is telling his followers, just as He is about to leave them, is that whatever they sacrifice for the vulnerable in their world, they sacrifice for Him.

In the Bible, God asks believers to give just 10% of their income to Him. What do you think it means to God when a family who has lived all their lives in one place, tear up their roots and move across the country to a state that has better services for their disabled child?

Read Matthew 25:31-46 again and pay particular attention to verses 35 and 36.
For I was hungry, and you gave Me something to eat; I was thirsty, and you gave Me something to drink;

We don’t just feed our children, many of us feed them gluten free, casein free, organic, hormone free, dye free, non-allergen, supplement enhanced diets that cost more money and take more effort than we would ever dream of spending on ourselves.

I was a stranger, and you invited Me in;
Our children are strangers to us in so many ways, yet many of us spent much of our time working hard to draw them out; to know them and to be know by them. The invitation is constantly being extended.

…naked, and you clothed Me;
If the time and energy that we spend clothing and diapering our children were invested in the space program, we could have colonized Mars by now.

I was sick, and you visited Me;
How many hours have you spent in doctor’s offices, at conferences, in training seminars, listening to lectures, and reading books so that you could attend to your autistic child's health? How many nights have you stayed up trying to comfort your little one who could not sleep?

I was in prison, and you came to Me.
How many times have you looked at your child who would not or could not respond to you and longed for him to be free enough to tell you what was going on inside his mind? How many times have you held your little one and cried because you just missed him?

All the love, all the acts of service, all the sacrifices, all of the other plates that you have let go of so that you could keep just this one spinning… He sees it all, and He says:
“You did it to Me”.
Remember that night that you were up cleaning poop off the wall in tears at 3 AM after eight consecutive months of broken sleep? That injury you sustained trying to save your child’s life for the third time that week? That beloved thing that you gave up because you needed those resources for your child? He was right there, He saw it all, and as far as He is concerned, you did it all for Him.

When your child was diagnosed with autism, or with any disability, God put you on a new road. It is rocky and dangerous and to journey on it is hard. It humbles you and strips away pride that would have been yours had you not gotten the diagnosis. But Jesus said that He can only use broken people. People whose egos have melted away, people who have been brought to the end of themselves and had the love of the world’s economy squeezed out of them. People who are dieing to themselves. It is only then that they can begin to see, and to love, God’s economy.

Your child’s autism lays the ground work for God to be able to make you into a person who really knows Him and understands the world the way that He does.

The Corps has to strip away much of the man that showed up on their door step before they can build a Marine. My first three years as the parent of an autistic child have been a spiritual Paris Island. I am having the crap in my life stripped away by trying things based on the old paradigm, failing and having to go back and relearn the basics.

It has brought me back to a faith in God that I have not known in many years. A more child like faith that was less concerned with how I appeared and more concerned with just trying to learn from God how to get it right. His ‘Right’, not the world’s right. It is a faith that is removing my independence and accomplishments and taking me back to the dependency and instability that I knew when I first met Jesus. As I am pushing forty, I am learning how little I really know, how weak I really am, and how much the smallest thing that I give to God really counts.

And God has used Malcolm to do it.
THAT is the blessing of the disabled child.

Sunday, May 5, 2013

High-Functioning "Needs"

There isn't a week that goes by when someone doesn't tout off about how Malcolm "doesn't look", "doesn't act" or "doesn't seem" autistic. "Does he really need to be medicated?" "Parents today just want an easy fix for everything." (as if we were aware that this particular insult was being directed at us.) and "Well, those doctor's don't know everything."

Let me take this moment to clear the air, and educate and put to rest any misconceptions or ignorance you may have about Autism. In particular, HFA. Or, High-Functioning Autism. 

First and foremost. Unless you spend any significant amount of time with him. Don't believe for one moment that you have any knowledge, comprehension or insight about Malcolm, or Autism. I'm not sure I can make it any clearer than that. 

See. The biggest misconception we face is that because he's been diagnosed "Autistic"... he's supposed to rock back and forth, slap himself in the head, count fallen boxes of toothpicks with a scary degree of accuracy, and be a "really good driver.. yeah.. yeah... really good driver." 

His name isn't Rainman. He's never watched an episode of Jeopardy. We don't buy his underwear at K-Mart. 

His name is Malcolm. And he is not low-functioning, severe, or even classic. He is High-Functioning. 

So. What does that mean? 

Well.. let's first start with the basic meaning of Autism... 

au·tism

  [aw-tiz-uhm]  Show IPA
noun
1. Psychiatry. a pervasive developmental disorder of children, characterized by impaired communication,excessive rigidity, and emotional detachment: now considered one of the autism spectrum disorders.
2. A tendency to view life in terms of one's own needs and desires.

Interesting. I don't see anywhere in the definition, why, by the way, I did NOT write, that Autism is related to being Mentally Retarded. The next person who uses that particular phrases near, around or about Malcolm, will find ME, in their face, telling them exactly how ignorant that particular phrase makes them look. 

High functioning simply mean that some of these symptoms, are less severe. Individuals with high functioning autistic disorder may want to interact with other people. However, they don't know how to behave correctly. They have a difficult time understanding abstract language. For example, someone who makes a joke may be taken literally in conversation, causing confusion and miscommunication.

This, however, does not make his "Needs" any less necessary, required, vital or urgent. See, we still have a laundry list of symptoms that we have to deal with...

Symptoms that are indicative of high functioning autistic disorder are:
  • Motor skill delay
  • Obsession with specific items or information
  • Reactions to stimuli such as smells, textures, sounds and sights
  • Rigid need for rules and routine
  • Average to above average intelligence
  • Perseverative thought
  • Lack of eye contact
  • Difficulty organizing time
  • Inability to manage conflict
  • Anxiety in crowds
  • Speech delays
  • Language impairments
While you, who live outside of our little bubble might only witness the speech delays, or his 'slurred' speech, and an occasional meltdown, do not think for one moment that we do not struggle, at home, in private, out of your line of sight, with the rest of these things. 

In Malcolm's case.. He had HUGE Motor skill delays. Obsession over specific items? It's usually the cause of a HUGE fights between him and his brother. Reactions to stimuli? Why do you think we DON'T go to movies? Or the mall? or to any place that is exceptionally loud? Need for routine? Yes. There's a reason getting ready in the morning right now, as we're headed into summer, and warmer weather is a challenge. He only wants to wear his blue polar bear shirt. And he refuses to do his homework until his cup, filled with chocolate milk, and a peanut butter sandwich is in front of him. He only uses his green pencil. I have no idea what we're going to do when that green pencil is 1 inch long, and can't be sharpened any more. Are you getting the idea yet? This is all stuff you don't see.. because you don't live in our house and see him everyday. High Functioning Autistics, for the most part, are able to 'hold it together', when outside in 'our' world, when they know they need to. At school. While spending a night away from their parents. Etc. At home though, he's safe to retreat back into HIS world. A world where sounds are too much. Textures make food inedible. Looking others in the eye is too distracting from what they're saying. 

Am I getting through to you yet? To understand a high functioning autism, it's important to know the symptoms of the more classic or severe types that are not evident in this milder form of the disorder. High Functioning Autistics typically display:
  • No physical or outward appearance of the disorder
  • May be able to perform most physical tasks without difficulty
  • Do not appear to have speech impediments or developmental delays
  • React appropriately when touched
  • No cognitive delays
Especially when out, in those places where they know they have to 'hold it together'. 

Again, let me reiterate. Just because they CAN hold it together, doesn't mean that they AREN'T Autistic. Doesn't mean that they can turn Autism on and off. And it certainly doesn't negate their very real "needs".  Therapies. Routine. Doctors. Doctors. More Doctors. Awareness. Support. Patience. Family. Love. Steady, reliable and consistent relationships. 

Here are some things they DON'T need. Pity, Excuses, Isolation, People who "keep their distance", Stares, Comments, Spankings, Broken or Empty promises, Being ignored. Ignorance, Bigotry and Fear. There's many more things I could add to this list, but it would go on forever, and I'm getting tired. 

Ultimately, I'm writing this for one simple purpose. Treat Malcolm with the dignity, respect and love he deserves. You don't have speak in hushed tones around him. You don't have to relegate him to one corner of the house. You don't have to be afraid that he's going to break everything in your house, 'freak out' your kids, or pee his pants in the middle of your kitchen. In fact, it's probably YOUR kids that will freak him out, and unless you lock him out of the bathroom, he's completely potty trained. Just be aware of his "needs". Don't startle him. Don't turn the tv or radio up to 11. Don't expect him to eat the 11 course gourmet dinner. He's quite content with Mac N Cheese and other "yellow foods". Oh... and above all... Don't treat him like he's stupid. He's not. Chances are, he's a lot smarter than most of you reading this. I know he's a lot smarter than the one writing this. 

So yes. When I advocate and fight for funding, or services for ALL Autistics, because their "needs" are costly, please make NO mistake, I fight for Malcolm, first and foremost. And above all, make no mistake, the "needs" of Malcolm, and every child, teen and adult like him, HFA, are real NEEDS. 

Tuesday, April 30, 2013

I'm a Parent, and I'm human...

My first thought is that The Orange Rhino Challenge was a utter failure. But then, as I think about it more, no. No it wasn't. It has definitely awakened something in both myself and my husband. And though we didn't manage to keep with the challenge for more than a week, we ARE aware that something needs to change.

That said, I am reinstating the challenge. Day one. Afterall, we can't move forward, if we don't take that first step. Even if it's the second time we've taken that step, right?

I will admit. I was unhappy, discouraged, and angry that the yelling started up again. I was disheartened by the ease at which we fell back into that old routine. But, something sparked, and I suddenly realized this could be viewed like any other adventure we undertake in this house. I mean, we didn't become 'experts' at World of Warcraft, Lord of the Rings Online, or any of the other multitude MMO's that we play, either overnight, or on the first try. In those games, when battling some new task, or monster, we died. A lot. And we respawned, back at the beginning, to retry said quest or task. So... This boss, that I am now calling "The Dennis Banshee", won the first battle. We have respawned though, and we will gather our wits, restock our inventory with the appropriate wares, and forge on, head first, once again into this evil spawn's pit of destruction, and hopefully vanquish her this time.

A Different Kind of List for Autism Parents....


So, we've all seen the multitude of lists published around the internet about what to say to an Autism parent, what NOT to say to an autism parent, Things an Autistic child wished you knew, etc, etc. I read them, these days, half-heartedly, and with even less enthusiasm. Not that I don't agree with them whole-heartedly. I have just seen so many, and most of them, anymore are just regurgitated, edited versions of the originals. (Do we honestly even know where the originals are??) 

I happened upon another Autism Parent's blog, and saw his post about some of the things he allows his Austie child to do, that most NT (Neuro-typical) parents would never allow. Got me to thinking. (Not that it takes much to get the wheels turning.) What behaviors and activities does our little prince get to take part in, that most NT parents would cringe at? Some of these I encourage my son to do because it's a typical thing that kids do.  Some of these I let my son do because I pick & choose my battles.  And some I let him do due to the limitations from his disability...


So here they are... no particular order... the things we let the little tyrant…erm, prince, get away with:

NOT DRINKING OUT OF A REGULAR CUP
Sippy cups and sport bottles that stimulate his vestibular system are a must. Even if he is 5. Just about every major milestone that Malcolm has hit, has come a great deal of turmoil, frustration and hard work on Malcolm's part. If he's not ready to give up this last vestige of 'baby-hood security', then I'm okay with that. The fact that I don't have to take it with us anymore is a major achievement all it's own, and we rejoice in that little success, even as we're purchasing yet another bottle brush, so we can scrub out the rubber stopper that fits in the lid of the sippy cup that he uses at home. 

TONS OF TV/VIDEO GAME/COMPUTER TIME.
This is the ONLY time he can focus and relax. So yeah, if he is over stimulated I just let him play on the computer or veg out in front of the tv for a while and it helps calm him down, while he is having fun. This is not to say it’s the ONLY recourse we utilize. He spends time in his ‘safe zone’ (his bedroom, with the lights down, and the noise reduced.) but seriously, who wants to be relegated to their bedroom everytime they’re having a bad day? Sometimes, it’s okay to just partake in some mindless, meaningless activity.

NO HUGGING POLICY
Not being "polite" by hugging his relatives. Malcolm is not a touchy feel-y kinda guy. And I refuse to make him hug someone he doesn't want to. That said, most everyone that visits him regularly gets a hug and kiss from him, as long as you’re in his ‘inner circle’. If he doesn't know you very well, or doesn't see you very often, don’t get offended, and don’t take it personally. He has some severe personal space and sensory issues. Remember, Mommy and Daddy didn't get to cuddle with him until just very recently, and even then, it’s on HIS terms.

STAYING UP RIDICULOUSLY LATE IF HE DOES NOT HAVE SCHOOL. 
We live and breathe our weekly routine, but occasionally, we say to hell with it and just let him be the night owl that he truly is. 
MENTAL HEALTH DAYS
Letting him out of school (or some other scheduled activity) if he has had a really bad meltdown. I'm not saying this is a regular fix. I’m not even saying it happens occasionally. In fact, school has never been an issue, but some days- it really just is not worth the battles that will occur if I don't bring him home or if we even leave the house. Once he hits a certain point, the rest of the day is shot.

NOT MAKING HIM CLEAN HIS ROOM.
Some days I require him to help, some days, I just do it myself, but most days, we just leave it as is. Are hot wheels, action figures, books and stuffed animals on the floor REALLY that detrimental to anything else going on? Not really.

EATING WITH YOUR HANDS
This is a combination of picking and choosing my battles and adjusting my expectations due to Malcolm's fine motor issues & major eating issues.  When your kid doesn't eat very well to begin with as long as he's getting it down I don't care that he uses his hands.  This might change in the future, but for now this is a battle not worth fighting. If it gets him to eat a salad, I don't care if he just shoves his face in the plate. He's eating, and that’s a win in my book. Also- cleaning your plate is never required in this house.

SPLASHING IN THE TUB OR POOL
It's a rite of passage for kids to splash around in the tub.  So what if water gets ALL OVER the floor!  That's what towels are for.  Not to mention, it took us YEARS to get him to a point where bath time wasn’t a nightly occasion for a meltdown. And the pool?!  That's what pools were meant for...  Splashing!  Why are all the NT parents discouraging splashing?  What am I missing?  Did I miss the memo?  :-)  I'm the one Mom in the pool who's splashing water in my son's face.  I must look like a big jerk...

EATING BREAKFAST FOR DINNER ...OR POPCORN FOR BREAKFAST OR... SPOONFULS OF JELLY FOR LUNCH
Again my kid's got major eating issues, so when he's hungry he gets what he wants (usually) and that's it.  Other ASD parents know what I'm talking about.  If he wants cinnamon toast for Lunch, so be it. If he wants Spaghettio’s for Breakfast, I’m breakin’ out the can opener. If he wants oatmeal for dinner, open the box of Quaker Oats and rev up the microwave.  I'll give my kid a multivitamin to make up for the lack of nutrition. 

GETTING DIRTY IN THE PLAYGROUND
Every time I take Malcolm to the playground I overhear at least one parent say "your getting your pants all dirty!" WTF?  This is what playgrounds are for!  Getting dirty!

WATCHING TV DURING MEALS
Not every meal... but again you gotta pick and choose your battles.  If having a show on will get him to eat more then I'm putting a show on.

NOT EATING AT THE TABLE
Mr. Malcolm usually does pretty good at Breakfast. Lunch, he seems to do good at school. (At least we’ve gotten no “He won’t stop wandering” complaints from his teachers… yet.) Dinner? We try to make him sit at the table, but usually, it ends up being kind of a wandering around-graze-fest, as he finds something else that is much more interesting than mom’s cooking. He does return to refill his mouth, only to jaunt off as he begins the slow process of chewing. Very few meals have captured his attention long enough to turn it into a ‘sit down meal’. Mac N Cheese. Pizza (about half the time.) Spaghetti. That’s about all I can think of at the moment. There might be one or two more. Probably not though.

JUMPING IN PUDDLES
Back at the playground I hear NT parents yelling "don't jump in that puddle!"  Meanwhile I'm on the other end of the playground trying to TEACH my kid how to jump in a puddle.  Jumping in puddles is another rite of passage, a part of growing up... (Except between the months of November and March-ish, in the Midwest… when most puddles also contain a great deal of ice and/or slush.) Then I turn into the puddle-nazi. “NO!!” ;)

TALKING TOO MUCH OR TOO LOUDLY
My kid was non-verbal until about a year ago, so usually, the chatter doesn’t bother me. We don’t tolerate screaming, for the sake of screaming,  or screaming at his sibling, but for the most part, his voice is nothing but music to our ears. We love hearing him go off on a tangent, even if others barely understand him.

SITTING IN THE CART AT THE SUPERMARKET/STORE
He’s been pushing him to walk more lately and he's been doing pretty good... due to his school going on field trips every 2 or 3 weeks.   But if we need to get in & out of Walmart quickly or if Malcolm is having a bad afternoon I have no problem stuffing my 5 (almost 6) year old into the cart and giving him a bag of popcorn and a book to keep him happy.

JUMPING ON HIS BED...
I can remember just a few years back when Malcolm didn't know how to jump. And they would work at it in his occupational therapy sessions.  Now he's a jumping machine. And we encourage it. Why? It’s good for him. It’s called compression therapy, and it helps bring his little body into alignment, calm him down, and divert meltdowns before they happen.  It gives him some much needed input, that he isn’t getting otherwise. We don’t have a trampoline, so uses his bed like a trampoline.  Now 3-5 more inches and he'll be hitting the ceiling when he jumps on the bed. But we will allow it until the bed breaks or he hits his head on the ceiling....whichever comes first.   :-)



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