Halloween…it’s scarier than you think!

pumpkinWith Halloween coming this week, I thought it would be a spooktacular time to discuss, well, Halloween…and autism of course! As I’m sure you can imagine, holidays in an autism household are quite different from those celebrated in regular homes. No matter how hard we try, it just wont be, it can’t be the same. There is an entire checklist, specific to the individual child, that an autism parent must consider when participating in every facet of Halloween festivities. For some of us and our kids, Halloween can be a complete horror.

For parents of typical kids, one of the biggest obstacles to overcome is probably choosing and finding the desired costume; the only one that will make little Johnny or Susie happy. I don’t disagree – that can truly be nightmare, having been a kid in search of the same perfect costume myself. It’s a little more involved, however, for the autism parent. First of all, will my kid even tolerate a costume? Autistic kids can have definite aversions to certain fabrics, accessories, and make-up that construct most costumes. And forget about masks, I’ve yet to meet an autistic kid who will wear one. Neither of my sons will wear anything on their heads, so that rules out all costumes with hats or wigs or anything that ties around their neck/head. My boys will also not tolerate anything on their faces, so no glasses, rubber noses, fangs or make-up. In my quest to pretend to be normal, I have tried to force these items onto my sons (many, many fruitless years ago). The make-up was like a sensory sensation for them, and by the time they were finished, I ended up telling people they were dressed as “tie-dye” and “spin art”. I have finally given up on my forced attempts at Halloween costumes altogether. Although I’m pretty sure I’m not the only autism parent who had a glasses-less Harry Potter wearing only his Hogwart’s robe for Halloween…year, after year, after year.

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Candy!! Yay!! My favorite part of Halloween!! Who doesn’t love the candy??!! My kids, that’s who. The big one will only eat Reese’s Peanut Butter Cups. Only. The little one can’t eat candy at all (he’s the one who doesn’t chew, and only eats one brand of yogurt), so unless someone happens to be handing out La Yogurt Smooth & Creamy Tropical Blends, it’s a trick not a treat for this particular child.

Safety is a huge Halloween consideration for every parent. We all carry our flashlights, hold the little one’s hands, and direct them safely across streets. But with my sons, we have a different safety concern. My boys will approach the door…and walk right the hell in. It turns out people don’t like that very much. At all. My son’s don’t understand that you are supposed to knock and wait, so unless the homeowner happens to have a picture of a stop sign taped to their front door, they may find my kid in their living room. Eeek…what a terrifying thought!! stop_sign

In an effort to still feel the ghoulish spirit, we have also tried taking our goblins to a Halloween carnival. Yeah, no. Can you say sensory overload? With the flashing strobe lights, spooky sounds, cacophony of smells and masses of people dressed in unusual attire, I’d have been far better off booking a family suite at Arkham Asylum. Straitjackets for five please!

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So ultimately we have given up on the entire trick or treat thing. The boys really don’t miss it, in fact I think they get more excited seeing who comes to our door as we hand out candy to the neighborhood kids. The little one enjoys guessing the names of our visitor’s costumes, and we always make sure the coveted peanut butter cups are in the trick or treat bowl, so the big one can treat himself to his favorite candy for Halloween!

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Forms and Feelings…

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As parents, every year we all have to fill out or update the obligatory forms for our kids to attend school or various extracurricular activities. These forms are generally very standardized; just your name, rank and serial number please…unless you’re an autism parent. Forms take on a whole new meaning for us. We, like you, fill out the generic clinic cards. However, it takes us much longer to list things such as doctors and medications. The “Special Conditions” section can require a “see attached” sheet of paper (or two), and a back-up pen (or two). Another time-consuming portion for us is the “Persons to contact in case of emergency”, because face it, people aren’t vying for THAT position. True Story.

In addition to the basic information, autism parents are required to fill out a litany of other necessary forms. Forms that typical parents never have the displeasure of laying a pen on. I have spent the last 3 hours desperately trying to complete a 13 page form for a 9 a.m. meeting with the social worker at my son’s school. Most parents never even realize that their school HAS a social worker, and heaven forbid they ever be called in to see them. The autism parent, however, spends lots of time with the Social Worker, and the Behavior Specialist…the school Psychologist…oh, and the nurse (not to exclude the teachers, cafeteria workers, or janitors, because they all play a part in my kid’s day). I think most people feel that associating with these folks attaches a stigma, one that makes most parents (of typical kids) cringe. The autism parent feels no such embarrassment, because we know these meetings are not based on our poor parenting skills or what horribly inappropriate thing little Johnny said in class that day. We have lengthy meetings with this group repeatedly throughout the school year. We fill out paperwork and forms a plenty. We autism parents can realistically wallpaper our houses with the procedural safeguards that they are required to issue to us at every single meeting. At my last meeting I asked if I could just keep my one original copy and have them recycle the rest for a lifetime supply of toilet paper at my house.

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The forms are of course a necessity to keep our children safe and to troubleshoot any problems, as well as formulate the best educational plan possible. My head knows this. My heart breaks because of it. The magnitude of having to answer “No” to such questions as, “Does your child use a fork to eat solid foods?” about your 9-year-old son who can’t even CHEW food, or, “Does he use the restroom at home independently?” about your 14-year-old who comes out of the bathroom covered from head to toe in his own sh*t every time, is more than just answering “No” to a question. It’s a line by line, page after page reminder and admission of all the things my sons can’t do, now or ever. It’s amazing how quickly I can lose focus on all the wonderful things my boys can do when these forms cause such feelings. It can disarm a warrior mom in one stroke of a pen. So yes, I admit I feel supremely depressed after filling out these types of forms…a shade of blue Crayola has yet to formulate. Will this warrior mom let the forms beat her?? To this question, I unsheathe my pen and once again check…

Box #1  “No – unable.”blue crayon

School Year’s Resolution

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Traditionally, on New Year’s Eve most of us make our resolutions…whether it be to drop those extra pounds, quit smoking or drinking, or to start exercising (I know these all so well because I have made each and every one of them at some point) with no real intentions of carrying through on them. I’ve generally found it’s best not to make life altering decisions while drunk and wearing a foil tasseled party hat. Okay, maybe it’s unfair to generalize, but even my best attempt at carrying through on a resolution usually fails by mid January. Personally, I prefer to resolve giving up something I already don’t like…I mean why knowingly sentence yourself to failure? Yep, as of midnight, no more Liver-n-Onions for this girl. Therefore I have resolved to do away with the entire idea of abiding to some drunken promise made at the start of each new year. Instead, I have soberly opted to extend my time frame for self betterment to the start of the school year…after all, how is one supposed to achieve success at anything with 3 children underfoot, undoing everything that has been done and then some?? Especially if 2 of those kids are constantly using me as a tool, as autistic children often do. Don’t get me wrong, I am successful at keeping them all alive, fed, sorta clean and mostly safe, but anything beyond that…eh, not so much.

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Now that the school year is in full swing, I find myself desperately trying to adhere to some sort of normal schedule. For my one ultimate “school year resolution” is structuresweet and simple, right? Hmph…nothing is ever simple here in the house of chaos. I have these glorious aspirations of getting all 3 kids to school each morning and gettin’ things done! Exercise, chores, errands and paperwork could be done in peace and quiet. I’d shower every day (Greedy? Perhaps). I would be ready for the return of the children after school with snacks prepared (yeah, maybe I’ll even be wearing an ironed linen dress and string of pearls too). Next, bring on the therapists; Occupational and Speech! I’m waiting with a fresh pot of coffee and the children dressed and ready. (Understand, the “dressed” part in an autism house is not as easy as it may sound. My therapists expect coffee and nudity when they come to my house; I am of course referring to the boys, not myself.) And then, by day’s end, everyone is tucked in their own bed and fast asleep by 10pm, MYSELF included. “Night John Boy”, cue the music and roll the credits. That scenario is and shall remain pure fiction, because autism, in its need for scheduling and structure, seldom allows for scheduling or structure.

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Instead, 3 weeks into this new school year, it’s gone something like this…Mostly sleepless nights, where we fight to get autism to stop moving long enough to process that it is indeed tired and physically requires sleep. One by one, the children finally succumb to the epic bedtime battle, usually within a mere 3 hours of each other. After a brief nap on an available dry corner of an otherwise urine soaked bed somewhere in my house, I drag my cranky disposition out of bed. Morning prep in our house is an lengthy process when dealing with the auties, since they have virtually no self help skills. This means we feed, clean, dress, and brush them from head to toe, while they physically and emotionally fight us the entire time.

First stop…wake up the girl child. She quickly pours me a heaping cup of attitude, because she is always tired from the late night antics that occur in a house with autism (like guttural screams at 2am, repeated door opening/closings, strobe lighting, and occasionally one will even crawl in bed with her). Next stop…the little one, who immediately upon seeing me says, “Go to sleep”, “My tummy” or “Head hurts”. He has figured out the sick card, and he won’t hesitate to play it…every single weekday. Yes Harry, I’m proud that you are trying to manipulate me; you are clearly my child, but you’re still going to school today. Whether or not you stay there depends on how convincing you are with your teacher and school nurse, since you also recently learned how the clinic works (in fact, I’m pretty sure they have me on speed dial). I admit, I’m beaming with pride as only an autism parent would.

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By this time, the big one has heard the commotion and is keen to what is about to happen…school. He spends his morning shadowing my every step, attempting to thwart my efforts of getting him to school. This includes, but is not limited to, hiding his clothes, shoes and backpack; locking himself in the bedroom; hijacking my phone and putting it in bed (because he knows it’s an extension of my hand, and where it goes I will follow). This exhausting game ensues until I finally push him out the door and onto the bus. As I stand on the sidewalk smiling and waving goodbye to their tear stained faces pressed against the bus window, I head back into the house, breathing a sigh of relief… knowing I don’t have to see them again for 7 hours, and they will surely be more learned and smiling when they return. With the school bus safely out of view, I wearily return to the dry corner of the bed from whence I came and sleep right up until the kids come home. So, I guess it’s fair to say that thus far, my entire “school year resolution” idea is about as successful for me as the unsuccessful New Year’s resolution….perhaps I’ll sleep on it.

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Get The Puss Outta Here!!

This is a horror story penned years ago, a Halloween nightmare come true. I was reminded of this ghoulish tale when a friend of mine recently told me they had contracted ringworm from their gym, and although this story is not autism related, I think it’s awareness worthy information for everyone!

I carry Clorox Wipes with me in a holster belt, and I’m a pretty quick draw, gotta be to survive in this here town. If it weren’t for Clorox, and their ever growing, germ fighting product line, this place would be uninhabitable. My love for bleach is so great, it’s more than just a temporary fling, or brief affair…it’s a lifelong commitment based on admiration and respect; a deep, unmitigated loyalty that will never falter. My affair with bleach began not when I found out how great it was for running fancy highlights through my hair, or brightening my teeth, but when all the children in our house (it was 5 kiddos at the time; my bestie and her 2 children were living with us then), were diagnosed with MRSA Staph infections…as if fecal smearing wasn’t enough.clorox

Now many of you might recognize MRSA as the infection that shut down the Cleveland Brown’s locker room about 5 years ago, or last year when the Tampa Bay Buccaneers had an outbreak, affecting many of their big name players. It was also responsible for the tragic death of a Philadelphia high school football player. It’s nasty, scary shit…not by definition. By definition, it’s called Methicillin-resistant Staphylococcus aureus. It’s a type of staph infection that is so bad ass, that it resists just about every antibiotic known to man. MRSA staph is resistant to most disinfectants/antiseptics used in health care facilities to clean surfaces, sterilize instruments/equipment, and decontaminate skin. Statistically speaking, 1 in every 20 health care workers are found to be colonized with active MRSA. What’s frighteningly interesting here is that MRSA is COMMONLY carried by completely healthy, unknowing people, on their skin and/or in their noses! So yes, you very likely have it on you right now. All of you booger picking, nose wiping people out there…BOO, did I scare you?! This beast can survive on surfaces and fabrics; so think about the tables, counters, chairs, as well as the coats and smocks worn by healthcare providers; and even the privacy curtains in hospitals and doctor’s offices, etc. (*Note to self: keep the kids the hell away from emergency rooms, hospitals, and doctor’s offices…see our story below). A person can carry MRSA without symptoms for weeks to years. It typically presents as small red bumps that resemble pimples, insect bites, or boils and can be accompanied by fever and rashes. Within a couple of days these bumps become bigger, more painful, and eventually evolve into deep, puss filled boils. That’s right gang…puss filled boils!! This type of staph spreads more rapidly and causes more severe illnesses than any other known staph infections. This staph can actually affect the vital organs. It’s unknown why some people develop MRSA skin infections that are treatable whereas others infected with the same strain develop severe infections or even die. There is a ton of other information regarding MRSA, but these are the things I wanted you to know before I present my personal tale of Methicillin-resistant Staphylococcus aureus… (http://www.cdc.gov/mrsa/community/index.html , 2014).

Our saga began when Harry was 18 months old, just learning to walk, he fell on top of our arthritic old dog while she was peacefully sleeping. As she is now resting in peace, she not so peacefully nipped one of Harry’s chubby little cheeks, leaving a small puncture. Just as a precaution, I took him to the nearest emergency room; where they cleaned the wound, adhered a simple butterfly closure, and exposed/infected him to Methicillin-resistant Staphylococcus aureus. Within days of our ER visit, Harry, who among a multitude of other issues, also has very sensitive skin (eczema, rashes, and NOW staph), appeared to have a small volcano on his little booty. After seeing this boil get larger overnight, and him getting progressively cranky, we took him to his pediatrician. Meanwhile, back at the ranch, Shannon, then 3 yrs old, also started developing a suspicious red spot on her posterior. Both of my babies were admitted into the infectious disease unit at All Children’s Hospital that night, diagnosis…MRSA.volcano-erupting

Ahh, good times. It was Halloween, so the kids really enjoyed being quarantined for almost 2 weeks, instead of dressing up in their costumes and going to parties, trick or treating, eating candy…but they did get to look through the window as other non-toxic children paraded through the halls in THEIR costumes (*Another note to self: don’t let children who are quarantined watch other children having fun through a window, it’s just not that wise of a decision come to find out). However, the real Halloween horror began when the infectious disease team entered the room, donned in their paper scrubs and rubber gloves, looking like something out of a science fiction movie (think E.T. at the end). As if that weren’t frightening enough for these 2 small people who had never seen anything the likes, this masked team of infectious avengers then proceeded to physically torture my kids, by rolling them over and “lancing” the infected area (a.k.a. squeezing all of the nasty puss out of their tiny butts). Their cries truly rivaled that of any horror flick ever made, and I felt as squeamish as if I were living in the most gruesome of movies. The team of unknown faces came in to perform this dreaded task for several days in a row, until they could squeeze not one more drop of poison from their wee bodies. So that was fun, in the most physically and emotionally “draining” way; coupled with IV’s, constant temperature taking, administration of the most foul tasting medicine known to man (like when the expression “eat shit” actually sounds preferable, if not desirable), hospital food, and trying to entertain 2 little children for nearly 2 weeks outside of their natural environment (and might I add with no cable or internet). That was the worst vacation I never had…and of course I had to burn the t-shirt as it was surely covered in MRSA.lego hazmat

To close out this “short story”, we came home from the hospital to find the other 3 kids (Cameron, Gianna and Georgie) all with…suspicious red bumps…that turned into…nasty puss filled boils. Yeah, I know…envy me if you must. Naturally we immediately contacted the doctors, and were fortunate enough to have caught it early on with the other 3 kids that there was no hospitalization needed (just the foul tasting medicine and the boil lancing in the comfort of our own home). Now we are well oiled MRSA fighting machines!! If the kids do experience a MRSA outbreak (which thankfully never happens anymore, knock on wood), we know how to detect and quickly diffuse the infection. I guess in a small way it’s a blessing that we know that our kids have it, and what to do about it to prevent them from ever getting really sick from it, as unfortunately the parents of the young athlete infected with were not so lucky. Sadly, they were unaware of what was even wrong with their boy before it quickly affected his organs, ultimately ending his young life. So I say fill up the bleach bath (Seriously, it was recommended by the infectious disease team: 1/4 cup of regular bleach in your bath water, once a week, it does the body good – EVERYBODY!!), break out the drawing salve, and let’s get the puss outta here!

http://www.cdc.gov/mrsa/community/index.html

 

Social Media…a blessing and a curse

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As I sit here writing this, I am on a self induced Facebook freeze-out. I have successfully made it 3 entire days without what was officially beginning to feel like oxygen. After a long, tedious summer of having Facebook as pretty much my only social contact / outlet, I’ve determined that for me, social media is both a blessing and a curse. The blessings are pretty obvious, and likely identical to anyone else you ask. Facebook has given me the unique opportunity to reconnect with some of the best people I’ve ever known. It’s given me the opportunity to reunite with old friends that I’ve known since we were in diapers. I get to see pictures of, or even chat daily with family members who live so far away that I would never know anything that was happening in their lives until I received their annual Christmas card (hah, remember those?!) Also a blessing are the many new friends I have made along the way. Even though I have never met many of them in person, they are truly a gift that brings me joy as I am given this window into their daily world.

My blessing is especially true in regards to my ever growing autism family. Through participation in the many autism groups available through Facebook, I am able to network with other families like my own. These are the people who truly get me…because they understand. They know exactly what I mean when I speak of the blessing (and curse) of social media. They also know what I mean when I talk of feelings of guilt, helplessness and isolation as a regular part of my day. My autism friends don’t judge. Not only do they offer continuous support and encouragement, but also resources to help make my life a little bit easier. Something as simple as the name of a good therapist (who is accepting new patients…and medicaid…and does home visits), or a new trick that worked with their child during a meltdown, that can save an autism parent hundreds of hours of frustration. Social media can truly be a blessing!!

For many of us, Facebook is like a daily High School reunion. And you have to admit, some people you get to know better than you ever really wanted to. Yes, that’s what you had for dinner tonight, that’s a stunning alcoholic beverage you had on Saturday night, and those are some stellar looking drunk selfies of you and your friends at a bar. Not only am I fortunate enough to see what my friend’s precious and perfect children / spouse looks like, but I get to see it every day! And I get to know what they had for dinner too!! While some people go out of their way to paint a perfectly less than accurate picture of their lives, I wish and pray that some others would do the same. Since my life is already challenging enough, I don’t necessarily need to hear about your personal drama as you freely air your dirty laundry for 500 of your closest friends to see (and obviously judge). Sometimes it makes me feel better; realizing I’m not so naive (or fortunate) as to worry about some of the ridiculous things that “regular” people preoccupy themselves with…and sometimes I think my eyes will roll so far back into my head that they may stick there, forcing me to permanently look at my own brain, which might actually be better than looking at some of the stuff I see in my Facebook news-feed.

This is all part of the curse of social media that most of us experience. What the curse means for me specifically, however, is a type of envy that most regular Facebookers don’t understand. I don’t ever feel envy over how great someone looks, or how beautiful their new house/car is. I will never feel petty jealousy that your new job pays you more in a year than I will make in ten. It really does make me happy to see my loved ones achieving success and enjoying their lives. It makes me smile, and personally I believe that happiness and laughter are the absolute best emotions ever. My curse comes from a completely different place, the land of autism. So I admit, as I look at pictures of family vacations and date nights with spouses, I am not envious over your vacation location, I’m envious because you CAN take a vacation! Jealous that you are dining at the best restaurant or the partying at the funnest club with your partner? No, I’m jealous because you and your partner CAN leave your house alone together without an act of Congress, because autism simply does not allow for that in my life.

Not to be a complete martyr, I do get an occasional escape with my high school bestie, who also happens to have 2 sons on the spectrum. (What was in the water at that school??) She and I head out, with our husband’s blessings, to play for a few luxurious days at…Disney World. We experience it in the most magical way you possibly can…without our kids, to decompress from our kids, and to act like kids. This is also the time I get to share my drunken selfies, what I had to drink on Saturday night and most importantly, what I had for dinner (because hey, I ATE dinner)! I cherish those times more than any mere words could describe.

All of that being told, my Facebook hiatus will now officially end, because I need to post this blog on all available forms of social media. Damn (<–curse) what a blessing!! 🙂

If I could turn back time…~Cher

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No, I’m not a huge fan of the song, yet I find it constantly looping through my head because I think I am a huge fan of the idea.  If I could turn back time, would I make a different decision, one that would have completely changed my life today??  The Butterfly Effect in terms of time travel, where even the tiniest change to what originally occurred results in an entirely different outcome in the future. Would one changed decision have made me the mother of typical children? Any children? Married? Hell, alive even?? I honestly think parents of special needs kids wonder (or maybe even fantasize) about this more than most.

This line of thinking has led me to a very controversial subject in the autism community; Awareness or Cure? If a magic Genie appeared and granted you the choice of one or the other, which would you wish for? Of course this is a purely hypothetical question, but one I frequently wonder about of my fellow ASD parents. There is NO CURE for autism. Period. There will also never be total awareness (and thereby acceptance) for people on the spectrum. No matter what, there will always be that group of small minded, knuckle dragging neanderthals that think our ASD children are spoiled or simply misbehaving.  A few minutes with them, and our autistic community would immediately dissipate, straightening right the hell up and falling in line with…them? Yes, physical and verbal abuse are surely the most effective way to cure autism. Slap their brains right into typical development….Yell at them until they become willing and able to communicate and socialize. It’s a solid plan…for a dominatrix maybe.

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Curious as to what other parents of autism might think, I decided to poll an autism group that I am a member of.  I also admit I started a bit of a shitstorm when I posted the poll question (I’m allowed to use the term shitstorm since I have survived numerous actual shitstorms, some of which make Sharknado look preferable!).  As the responses poured in, I witnessed disagreement and in fighting among our usually supportive group to the likes of which also made Sharknado look desirable. This is why I feel it is essential to again remind people that there are differing levels of severity for autistic persons, which is why it is called a spectrum.  So although we are in fact an autism community, each one of us as parents within that community has a completely different experience in raising our kids. Those of us with lower functioning kids may therefore feel more strongly on the cure side of this particular debate than that of a parent whose child can communicate or even handle basic self help skills.  After posing the question, “Cure or Awareness?”,  I found a very split consensus regarding this subject.  Since this was a very random, non-scientific poll there will be no statistics or percentages, just a general feel for what I took away from my peers.  My personal opinions on this matter are strictly that, my own. I do not disagree with any parent’s position on this question, or the reasoning as to why they feel the way they do. We parents know ourselves and our kids best, so no one is better at answering this question correctly for themselves then the person answering it. There simply is no right answer.

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In terms of awareness, many believe we need to accept autistic individuals as they are, embrace them for their differences, and not try to change them. Some firmly believe autism is not a disease, so why try to cure it?  I of course feel this way too, having 2 youngsters on the spectrum (and again, realizing that there is actually no cure, so it’s pointless to feel any other way. This bears repeating since someone will inevitably remind me after reading this that there is no cure for autism, gasp!).  If we spread the word of awareness, each day (hopefully) more and more people will learn about the condition and maybe extend a smile instead of scowl, maybe not stare so long, or maybe not offer never-welcomed advice to us parents after observing a meltdown for less than 5 seconds that our child is having in aisle 3 at Walmart.  Maybe if the public were a bit more aware, aka. understanding, we as parents could focus more on managing our children’s behavior while out in public without feeling totally ostracized from society.  Maybe.  One thing is for certain, acceptance by society can only come through making society aware.

Awareness is critical to me, I will never stop striving for it…EVER. Go Awareness!! However, dot.dot.dot., that being said, my stance on this PURELY hypothetical question, as unpopular as it may be, is Cure. All Day. And all night. Watching my boys experience daily what can sometimes only be described as pain, is enough for me to want a cure for autism.  Add to that the fact that they will and do actually inflict harm upon themselves through self injurious behaviors, and it’s a very clear decision for me. Watching them pace, squirm, grind their teeth and cry out incessantly makes me instinctively want to fix it!  Yes, I love my beautiful sons, and who they are, and of course I know curing them would certainly change them.  But you know what…I would welcome that change.  I want to talk to my sons, have actual two way conversations.  I want to know how they are feeling, and why.  I want to explain to them, and have them actually understand that things will be okay…from something as simple as a skinned knee to the complexity of a broken heart.  I want them to be comfortable in their own skin.  I want them to wipe their own butts and move the hell out of my house one day. Yeah, I want it all.

Although many of the parents who responded to the poll had a clear position regarding awareness versus cure, one response that resonated with me that I think EVERYONE can agree with, was, “Cause”. If we actually knew the cause of autism, there would be little need for the rest. Amen to that.

“Time you enjoy wasting, was not wasted.” ~John Lennon

I always loved that quote…until today, when I realized I waste a hell of a lot of time. Today, I am writing out of sheer frustration, a feeling EVERY SINGLE parent of autism is all to familiar with. I’m just so sick of the red tape that wraps around a special needs family so tightly that it practically suffocates them. Chasing my tail, only to get so dizzy I end up running head first into a wall at speeds well over 100 mph. Have you ever been so frustrated that you actually feel your brain getting hot, followed by your body tingling from the pumping adrenaline rush? And then, if your a crier like me, you start that indecipherable sob talking that you yourself can barely recognize or translate? Yeah, so that was me today. I don’t know, perhaps I need medication…Okay perhaps I need MORE medication. It’s just that the amount of time invested in what should be routine with our special needs kids is truly insane. The color of this tape supersedes red.

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I was reminded of this yet again today, repeatedly. I attempted to perform the simple task of refilling my oldest son’s prescription, for the third time. On both prior attempts, the mental health facility (one of the very few that accepts Medicaid in our area) failed to respond to my refill requests, and my son went off his meds schedule. Because of their delay, the time frame exceeded their 6 month policy, and pushed him out of their system as a current patient. Which means having to start over again, as a new patient (Again, third time this has happened). Which means making him yet another in-take appointment, *none available for 3-4 weeks. Then it means taking him for a torturous 3 hour visit to this office where the staff treats you like you are nothing more than an inconvenience and a nuisance as you try to keep your autistic son at bay while they ask you the same damned questions ad nauseam. Now that in and of itself is ridiculous, because we have been there 3 other times for this in-take process, and yet we can’t copy and freaking paste?! More wasted time, but they are getting paid, so no worries there. It’s truly a nightmare for the autism parent….a no wi-fi nightmare at that (I know, how rude, right? He has his iPad, but can’t connect to YouTube, which is cruel and unusual punishment for the kid and the parent). So yeah, I pretty much dread that entire experience, and yet I get to do it again…*in 3-4 weeks! I also neglected to mention the reason we have to go through this process again…it was because my son’s doctor moved out of state…and no one told us. No phone call, email or letter. I mean, hey, why would we need to know that our mental health practitioner for our severely autistic 14 year old son is leaving and will no longer be treating him? I’m starting to get dizzy…losing focus of my tail.

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Disappointed by that phone call, I brush it of, painfully aware that I cannot scratch it off my “to-do list”, and move on to the next simple call of the day. This one to sweet, unsuspecting Stephanie, my caseworker at the Agencies for Persons with Disabilities. Due to their low functioning status, it will be necessary for both of my sons to receive continued services once they turn 18 and their Medicaid runs out (Each state has specific guidelines regarding this). What’s sadly ridiculous is that there is a waiting list well over a decade long, so it’s crucial that they be on said waiting list from pretty much the moment they draw their first breath. And even then, you keep your fingers crossed that there will be available services at that time. It’s a crap shoot. Having recently updated my oldest son’s information, I realized no one had done an information update on my little one, so I called Stephanie to inquire. Not only did Harry never make the list, but it was due to my failure to prove his disability. This determination was apparently made years ago (like 6 years ago friends) when I originally applied for him to be put on the wait list, yet my caseworker at the time never notified me that certain documentation from a particular type of doctor was necessary in proving his diagnosis. I slipped through the cracks…again. Now if only I could just swing by and let them spend .02 seconds with my boy, I guarantee eligibility would be determined without question as they quickly escorted us out the door. Of course, showing them the actual child is simply not sufficient. We need an appointment with a specialist (see entire rant from 5 seconds ago about appointments with specialists above). So in the words of mental giant Popeye the Sailor Man … That’s it! That’s all I can stands, I can’t stands no more!
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Uh oh…what’s that? Oh, it’s just my brain sweltering, my adrenaline pumping, and me suddenly breaking into that indecipherable sob talking thing. Man, I hate it when I do that…how the hell can I be Warrior Mom if I’m blubbering about how hard stuff is?! Thankfully Stephanie is a patient and understanding soul, who listened and sympathized as she offered me names, numbers and contacts of people whose wait lists I have already been on for years and years. Smack…and there’s the wall, I have successfully hit it once again!

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Just as a “How To” manual does not come out with the baby during childbirth, nothing in the world of special needs assistance is offered up. We parents have to dig for morsels of information like chipmunks scrounging for post winter nuts. Then once we uncover a nugget of helpful information, we scurry like a rodent to get on their waiting lists. Hurry up…and wait!!

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I sleep around…and I openly admit it

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Yeah, that’s right, I’m the kind of gal that sleeps around. Every single night I jump from one bed to the next, laying down with multiple bed mates. In fact, I admit I am total sleep whore…I’m just severely underpaid. I’ll bet I couldn’t even tabulate the number of bed jumps or games of “musical beds” I play in my house every night…and day for that matter, because there is seldom any difference between the two in my house. Aside from my general psychosis, there is a reasonable explanation for why this happens: their names are Cameron and Harry. Yup, the reason I indulge in this particular “lifestyle” is that there are 2 autistic children living in our house, both on completely different sleep schedules. I start out in one bed, and end up in possibly 3, maybe even 4 different beds before it’s said and done….whether it’s a meltdown, a sensory seeking mission (such as a game of footsie or a 20 minute pillow pummeling), a sick / crying child or urine soaked sheets, it’s anybody’s guess where my chaos will take me in the course of a night.

Okay, so I will admit that it IS possible to get a decent night’s sleep as a parent, for example when your kids are sleeping at someone else’s house. Or maybe you are one of those savvy schedule adhering types that I so desperately long to be…but alas, I am an autism parent, which in my house currently knows no schedule. Most of you may know that autistic children require pretty regimented routines and tend to thrive on structure. During the school year, this is not always impossible to achieve, but introduce a change in that schedule of any sort, and everything changes. I’m in charge of workin’ the night shift, since hubby has the luxury of hard labor for low wages outside of the house during the day. Lucky bastard.

Our sleep schedules are absolutely insane right now… And as you can plainly see, delirium has already set in. Do you ever wake up and are so confused that you aren’t quite sure where you are, or what time it is…or hell, even what day, month or year it is for that matter?? This happens to me so often, it’s the norm. Of course I seldom, if ever, awaken on my own accord. Generally I have the rudest of awakenings (think fecal smearing,being urinated on, or blood curdling screams), but if by some miracle I should wake up because I am “finished” sleeping, I awaken in a sheer panic, because I was SLEEPING. Dear God…don’t I realize what can happen when I’m not conscious?!?!

Make no mistake, I love sleep, I respect sleep…I miss sleep. My sleep, however, has become a series of small naps distributed throughout the day. During the school year, when and if all of the kids make it to school (rare occurrence), I can actually sleep for 4 glorious, uninterrupted hours. And I’m talkin’ REAL sleep, like turn of the lights, the party is over because I finished all of the booze sleep. Most importantly, it’s the “turn off your brain” kind of sleep, which in my humble opinion, is critical to the well being of all living things. But then, introduce Summer, and we are transformed into zombies (non-brain eating variety).

Of course, we’ve tried many different efforts in our quest to solve the autism sleep schedule puzzle with our sons. We are not huge proponents of pharmaceuticals for our boys (now me on the other hand, unlimited refills please) mostly because they cannot tell us how it makes them feel, and long term studies on the use of such meds is still vastly unknown. Absolutely no judgement passing towards any parents who do use meds, because make no mistake, we are fortunate that our boys are non-aggressive and do little to no self harming. If that were to change, medication may become a necessity that we are fully prepared for. We’ve also used Melatonin, but it had absolutely no effect and since my boys do not swallow pills, it was difficult to administer by masking it in their food or drink. Heck, we’ve even tried caffeine, ya know, because 2 negatives make a positive (that’s not true when applied to real life, btw). Concerned friends and family have also offered their 2 cents, such as looking them in the eye and TELLING them to go to bed. Yes!! That’s exactly what we should do…now if only we could only get them to stop moving, making noises and to maintain eye contact for more than .02 seconds, we might be on to something here!! It’s not like we can just reason with them, because they comprehend no consequences. Threats of repercussions are a useless waste of breath. We’ve even had such helpful suggestions as, “Put a sliding door lock on the outside of their door, and just lock them in their room at night”. We kinda ruled that one out, on a count of it being cruel and unusual punishment for children who simply don’t understand, as well as being largely frowned upon by the police, the media, and our pals down at Social Services. Others seem to think if we just “shut the house down” and go to bed ourselves, the boys will follow suit. Yeah, tell you what, lock yourself in a room with an agitated monkey on your head and try to go to sleep. The bottom line is my boys cannot be left unattended, it’s just not safe – for them, or for us…or our furniture…or our carpeting…or our pets.

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So as we continue our efforts for a coordinated sleep schedule, and a longingly await the arrival of the new school year, I will simply face the fact that the one bed mate I may never hook up with is Mr. Sandman. I hear he’s dreamy <sigh>.

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Xanadu…No, more like Xanax

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 It’s extremely easy to lose sight of yourself when you are the caregiver to any special needs individual. You begin to define yourself by that, forgetting all the things that made you the person you were before…I used to be Jackie, and hey…to the best of my blurred recollection, I used to like stuff!! I used to enjoy employment, going out with friends, reading smutty novels, traveling, crafting, sleeping, laughing…I have vague memories of such events.

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I am currently the primary caregiver to all 3 of our children during the day; 2 auties and 1 typical. According to my therapist (yes, I felt the need to consult one of those years ago in my quest for sanity…a battle I have since waved the white flag on), each autistic child counts as 10 typical kids on the work equivalence scale. So by that standard, I watch 21 kids all day, every day – which feels much more accurate when measuring my exhaustion. I also feel it’s important to mention my lifelong doubts about my ability to be “maternal”, as I always questioned if I was even cut out for motherhood. Eventually I decided if animals, insects and idiots can do it, I can too! And heck, I don’t even have to master something as difficult as parallel parking, ’cause you don’t need a license to breed! Naturally, I never considered the possibility that my children would be anything less than normal (if not brilliant, like me, right?). Parenting, of course, is a life long commitment, I knew that going into the “breeding zone”. However, my commitment will be obviously different from most parents… I will never experience the glory and the suffering of empty nest syndrome (you know, that magical moment when you get your life back…). Two of my children will require life long care, which is a pretty overwhelming thought, one most parents fortunately don’t ever have to consider. I admit, I often get annoyed when parents take their own beautiful normalcy for granted, and yet blissfully unaware is what I too long to be.

And, no, I am not always the shining ray of sunshine that I present to you here. Like every parent, I have my days…and nights (and my days that turn into nights, that continue on into the next day). Sometimes in my darker moments, my mind runs through the plethora of things that my sons will never experience…Like developing real friendships; getting the “joke”; driving a car; making love to someone they love; or experiencing the wonderment of their own child. Unlike most parents, my thoughts are consumed with things like, who will really care for you when I am gone? Did others hurt or mistreat you while you were away from me (because you can’t TELL me if they did)? If I work diligently with you, day and night, might you someday have a breakthrough?? Does it hurt, autism? And what the hell is that under your fingernails?? I know I am not alone, I truly believe every parent of an autistic child wishes, even just for a minute, that they could be their child, be in his head, his body… to experience with new understanding this puzzle we try to solve each and every moment of each and every day.

 

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Is that juice or pee? Poop or pudding? You smell it…I refuse.

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This question is one that is frequently asked in my house…every single day in fact. It is also a topic I will write about often, because not only is it an overwhelming part of my life, but let’s face it people… you like to talk about poop! Why?  Because poop is funny…unless it’s smeared from top to bottom (the true offender) on your 13 year old son’s body, or caked under the fingernails he is trying to maneuver into your mouth while you are sleeping. That sh*t ain’t funny.  Yes, I know, I know, I live a charmed life, but considering 50% of Harry’s diet is chocolate pudding, and the only thing Cameron wants to drink is white grape juice, this question is truly valid in Casa de Cunningham. Is that juice sprinkled all over the toilet seat…or pee? Well considering it IS a toilet seat, best to just assume it’s pee (however, Cameron has been known to be oddly fascinated by the sight of his juice dribbling, and is a confirmed juice dribbler unto various other places in the house – including walls, floors, furniture, and yes, even the toilet seat). So by that premise, it could be either, but the real question…that brown streak running down the length of the hallway, is it pudding (Dear God, please, please, please let it be)…or poop? Again, history has allowed me to think it could be either…this question transcends the hallway and bathroom however, to an unlimited amount of places in the home. Sheets, towels, clothing, furniture, carpet & tile floors alike, door ways, door jambs, table tops, counter tops, and my personal favorite – the pool deck (which could occasionally and quite accurately be called the poop deck). Yes, at some point in my day I will inevitably ask myself, or whomever is within earshot, is that food or excrement?? (In keeping with this line of questioning, “What the hell did I just step in?!” is another viable daily concern). And to think, the plumbing contractor looked at me like I was crazy when I inquired about installing floor drains in every room so I could occasionally (daily) pressure wash EVERYTHING!! I’m seriously considering sending my washer, dryer, and little green machine on an all expense paid vacation to somewhere tropical and relaxing, as they could surely use the break!  As for you my friends, invest NOW in Clorox stock ASAP, and thanks to me, you too will be able to afford a tropical get away!!