Tuesday, September 13, 2016

How to be...That Mom

So I've managed to update our Facebook page more than the blog.  But please give MommaDe and I some slack.  We're moms to special needs kids.

I've made no secret that I've suspected that I'm on the spectrum.  Well, since I went back to school full-time, I wanted accommodations, and to get that...I needed a diagnosis on paper.  As it turned out, the third time was the charm.  My primary care provider got me a referral, and three diagnostic schedules and a psych report later, it was official:  Attention Deficit Hyperactivity Disorder superimposed on Autism.  On paper, it's "mild" autism.  I'm not fond of functioning labels (anymore).  But, that being said, if Asperger's Syndrome was still a diagnosis, that is likely what would have happened...if I had been diagnosed the first two times appropriately, and not dismissed by "medical professionals."  That was the diagnosis I attempted to pursue in 2007 and 2009.  But, that's another blog for another time. Henceforth, I am going by The Mommy Autistic instead of High Functioning Mommy.

This semester, I'm taking two writing classes...to offset the fact I'm taking Elementary Statistics.  Writing is one of my "narrow restrictive interests" so I'm hoping that will translate to good grades in those classes. That being said, I wrote this for Fiction Writing.  It's based on actual events, it's good advice, I had to limit it to two double-spaced pages...though the internal mommy thoughts of the character are quite embellished.  Enjoy!  ~The Mommy Autistic

How to be...That Mom

Worry not reader, don’t let my use of “mom” put you off—fathers, you can just as easily be “that dad,” or even “that parent” if you prefer ungendered terms.  “That parent,” known to school administrators, teachers, and doctors.  Sure, all parents have a bit of overzealousness when it comes to their children—it’s human nature.  But parents of special needs children are inducted into a different type of parenthood.  In order to make the world safe and accepting of their child, their involvement with their children is often escalated a few notches…and then some.  This is not the same as helicopter parenting, though we know we certainly appear so at a glance.

You may not realize how easy you have it until your normal is not normal, or when normal comes your way, it’s bizarre to you.  What is normal, anyway?  A setting on a dryer.  Normal parents send their kids off to school, usually without a second thought.  Special needs parents have diverse varieties of normal, and it fluctuates depending on their child’s unique needs.  We usually manage to retain a sense of humor about it, mostly as a survival mechanism to offset stress levels that can rival those of combat soldiers.  Humor, and copious amounts of caffeine.

A normal kid comes home and says how they did this or that, maybe complain a little.  They bound off the bus and walk, jog, or skip into their home.  No supervision necessary.  Just another brick in the wall.  A special needs parent must meet their child at the bus, lest their son run off.  The smell hits just as you take your child’s hand.  Red flag number one.  At least your kid’s wearing a long tank top and dark shorts today.  The aide that sits with him on the bus reports he fell asleep before the bus left the school (bless her heart for not mentioning the stench!).  You nod, thank them, and go inside.  Two steps in, your first grader is ripping his clothes off and you are horrified to find that he is wearing normal underwear.  Normal!  There’s that word again.  But the underwear doesn’t look normal…before your kid can run off and spread doodie destruction, haul their 55 pounds into a bathroom.  You hope your denial will make the stinky go away as you envision Ludo from the movie Labyrinth moaning “Smell…bad…” upon arrival at the Bog of Eternal Stench.  A few minutes later, after your potty-training (speech delayed!) child has had a baby wipe bath, he is now flapping his hands at Thomas the Tank Engine on Netflix wearing nothing but a clean (for the moment) training pant, you go through his communications binder, and realize you are not crazy, you did leave written instructions multiple times for him not to be sent home in underwear.  And here we are…four times in two weeks.  The last three he was wet, but not today.  No, today was worse.  And it’s not just about the potty training.  You child also has a medical condition that effects his digestive system…and now I’m thinking of the flatulent rocks from the same scene in Labyrinth….

So you write a note—full of righteous Mommy anger—and rightly so.  Your speech-delayed child can’t tell you they’re screwing up, can’t advocate for themselves.  A normal kid can.  But who watches out for those who can’t defend themselves?  Is it any wonder that special needs parents tend become irrationally angry when something negatively impacts their children, even if it isn’t intentional? 

“That mom” starts out giving people the benefit of the doubt, until trust is repeatedly broken.  For one child, it might be a diaper mix-up.  Another child might have a life threatening condition where one mistake could mean life or death.  You might think of us as “that parent” but we tend to envision ourselves as our kid’s superheroes.

As it turned out, my professor said she liked it, and that it was different.  I think she might have even said good job.  I did include one clarification replacement word (as suggested by my professor), and now hopefully you enjoyed it too.  

Wednesday, December 9, 2015

Dear Santa

Dear Santa,

You probably don’t remember, but it’s been three years since my Destructo has come to visit you at the mall.  He just turned six last month.  It was his little sister Jellybean’s first time meeting you.

When I told you Destructo was autistic and had a speech delay but if you ask him something enough times he might respond, you smiled and opened your arms to him.  You also weren’t phased about me warning you that his little sister was so very, very two years old.

Destructo had woken up at 4:30 that morning and crashed during the twenty minute drive to the mall.  He was a little subdued and I was worried he could melt down at any time from being so exhausted, but I only mentioned he was up early.

I asked if we could take our own photos, and the photographer said as long as we bought a photo package we could.  I then asked her what the cheapest package was.  But when I started to ask my husband if we could spare it, you chimed in and said that we didn’t need to buy a package. 

We were hopeful we could just snap photos with our camera as Destructo and Jellybean ambled about, and if we were lucky, we’d get a few good ones.  Somewhere during this time Destructo leapt into my lap and wrapped himself around me with all the strength of his nearly fifty pounds behind him, laying his head on my shoulder—his way of letting me know he was anxious.

Managing to peel him off of me, I brought him over to you.  I had to lead Destructo in conversation.  You offered your knee, Destructo had an adamant “No!” to that.  I quickly suggested sitting next to you, patting the green velvet cushion next to you, and you obliged by making more room.  Destructo hopped right up.

Destructo was tired, so he wasn’t spontaneously speaking.  It sounds a silly thing to be exhausted at ten in the morning, but it’s per the norm for an autism household.  Autism parents make lots of jokes about the amount of coffee they drink.

But Santa, you didn’t ask anything of Destructo.  When I had to help him ask for the toys I knew he wanted, and he repeated me, you treated his echoed words like his own.  I’ve never been so happy to be ignored, and I was able to move out of the way.

My little man stayed with you without making a dash for Mommy.  Jellybean encircled the area, looking for ways to get in trouble, and I had to get some of the gift props out of her hands since she was trying to unwrap them. 

I found myself sitting on the floor at the entrance to the Santa space; a reflexive reaction because it was the only way my kids could get in or out.  This way, they could have some space and I could make sure they were contained.

Santa.  You engaged my son so much that I did not realize until later that I was able to give my son some freedom.  I talked “shop” with one of your elves and was impressed she could speak the language of special needs.  I even got to brag that we were able to drop a few therapy sessions from Destructo’s IEP this year because he is doing so well. 

During all of this, as my husband snapped photos, you offered lollipops to both Destructo and Jellybean, though Jellybean still refused to sit on your lap she had no qualms about climbing up to get at your lollipop stash.  The lollipops made them both very happy.  I didn’t have time to mention it, but I was also very pleased to see non-candy treats, because Santa, we are an allergy family too.  The lollipops weren’t an issue for my little ones, fortunately.

Dear Santa, our visit with you was extraordinary in that it was ordinary.  There was no screaming.  No meltdowns.  No one attempting to run away.  Just a happy boy and girl with lollipops.  At the end of our fifteen minutes, you gave both my husband and I each a hug, which neither of us expected.

Thank you for giving us a memorable visit.  We even got some beautiful photographs.  Thank you from the bottom of our hearts. 


High Functioning Mommy and Destructo Daddy

Tuesday, August 4, 2015

An Essay on Neurodiversity

High Functioning Mommy here.  As I may have pointed out in the past, I self-identify as Autistic. I graduated high school "by the skin of my teeth" back in 1999.  I struggled greatly in math and any science class involving algebra.  I also had (have?) an extremely short attention span and it showed in my grades...I was a straight C student except when it came to tests, midterms, and finals.

I first attempted community college in 2001 and flunked out of most of my classes within a few weeks.  I took too many classes on and between that and professors giving 0 quiz grades for not being to afford textbooks, I only ended up finishing maybe one art class or two.

After that one failed year, I went to work, spending my time various retail jobs until the spring of 2010, when Destructo's unpredictable sleep schedule coupled with his various medical issues at the time finally caught up with me, and I left my job.

I remained a stay-at-home-mom until July.  At my husband's urging, I enrolled in a condensed summer session class at our local community college just to "get my feet wet."  I wasn't sure how I would do, but Destructo Daddy for some reason had faith in me.  I also went back to work part-time!

The following was my first assignment. Our topic was on a belief we strongly held.  After some pre-writing exercises and lots of editing, this was my final essay. My first version was was six pages long...the final version was three (double spaced, of course).

I hereby present...an essay on neurodiversity.

When it comes to disabilities, mainstream cultural norms need to evolve.  This is especially true in regards to autism.  Autism is a neurological disorder that is characterized by problems in socialization, communication, and sensory processing.  Old fashioned judgements are common when it comes to autism.  Two of the most common are sympathy and anger, usually as abrupt reaction to an autistic person’s behavior.  Autistics can and do lead fulfilling, happy lives as well as having their own version of cultural norms.  If the world could embrace neurodiversity, they would realize their engrained responses are unnecessary.  Neurodiversity is the belief that neurological conditions such as autism are not in need of curing, but a natural evolution and should be accepted and supported.
Consider this this scenario. You’re minding our own business at the grocery store. While enjoying the ambiance, you are suddenly jolted out of your thoughts by a child screaming, and you think to yourself, “What a brat!”  You glance at the other end of the aisle and see a woman peeling a little school age boy off the linoleum and giving him a bear hug. 
            Now, experience their point of view.  An exhausted mother is shopping with her son.  Unbeknownst to you, her little boy has autism and today he is home sick.  His mother is holding his hand tightly while they shop.  He doesn’t like this place.  It smells bad.  He hears a buzzing that hurts his ears.  He looks up, and immediately is overwhelmed by the harsh glare of the florescent lights.  His body hurts from being sick.  He becomes anxious, this place make him feel “bad,” and he wants to go home.  Home is “safe.”
After a few minutes, the little boy asks, “All done?  Go to the car?”  His mother knows this means he’s ready to go.  But she also knows he’s out of the only dinosaur chicken nuggets he’ll eat.  So she replies, “Soon, honey. Not yet.”  Flight or fight takes over, and he cannot cope with his anxiety, his pain, and the horrible smells anymore.  With a loud scream, he yanks on his mother’s hand and begins to fall backwards.  This mother knew her son wasn’t feeling well, yet she was secretly hoping that he would hold it together until she finished shopping.  His mom manages to get him standing and hugs him tightly.
            I am that mom.  Neurodiversity is important to me because I am surrounded by autism daily.  I did not realize it until I became the mother of an autistic child, but I was surrounded by several different facets of high functioning autism in childhood as well.  My younger brother and father face similar challenges.  I had my first child, a son, after a normal pregnancy.  My child was diagnosed with autism a few months shy of his second birthday.  As I learned what a lot of the common traits were…as well as the uncommon quirks, I realized I had been surrounded by them my whole life because they were part of my cultural norm.  I have heard of many instances of parents mourning their child’s new diagnosis, my son’s simply brought me relief.      
Prior to entering primary school, my son’s education started as a toddler due to his need for physical, speech, occupational therapy, as well as special education. These formative years are very important and “early intervention” leads to better lifelong outcomes for the child. We discovered his many strengths. Eye contact and speech improved when his body was given certain types of physical input, such as deep pressure and swinging.  By the time he was five, we figured out he was likely hyperlexic; he can read, spell, and mostly pronounce words most children do not learn until second or third grade, though his comprehension for some of these words is delayed.
            Public outings can be challenging.  A common phrase in the autism world is, “Behavior is communication.”  It is important to understand this concept when it comes to a non-verbal or speech delayed person.  A child suffering from a meltdown does not care you think, nor have any regard for their own safety.  I often say to onlookers, “Don’t worry, he’s just autistic,” or, “Don’t mind him, he’s just spreading some autism awareness.”  And often, the immediate reply is, “I’m so sorry.”
            This is where attitudes need to change.  Often, I feel offended when people try to show sympathy. But I also realize they think this an appropriate thing to say, or it’s the best they can come up with on short notice. This is especially true since I often jolt people into realizing they’ve figuratively put their foot in mouth by judging my parenting skills.  The condolences are unnecessary.

            I do my best to promote neurodiversity by sharing my life experiences with autism. I hope I have shown that, at least in my family’s situation, we are not suffering though we do have many challenges.  If I am unable to further this concept by introducing the world and my son to each other, I try to educate through social media platforms such as a blog and Facebook page that I share with another “autism mom” who is a dear friend of mine. We are just one among many autism blogs that exist along with likely hundreds of other autism blogs out there; in fact we follow many ourselves.  We have many of the same goals, such as praising and promoting neurodiversity as well as autism awareness, be it through chronicling our fight with school districts to get the services our children need, or sharing something amusing our child did that only other autism parents can appreciate.  It’s not always a disability, just a different ability.  Autism is a culture on its own. 

You might be an autism parent if...you buy the last of "THE" chicken nuggets you need left in the freezer case even though you weren't planning on buying that much.

Saturday, June 27, 2015

How Not to treat an Autistic Patient

How Not to Treat an Autistic Patient

I've gotten ranty the past few times I've had to recount this to someone, so I figured...why not blog and spread awareness at the same time. But based on the reactions of the professionals I've told this to, I am apparently not overreacting.

This past Mother's Day, I spent several hours at Samaritan Hospital's Emergency Room Department with Destructo. As you may know, Destructo not only has a GI disease called FPIES but also deals with feeding and sensory aversions. Aside from having dairy and soy as food allergies, we also recently discovered that he has a sensitivity to food dye; it has adverse effects on his behavior, such has inability to transition between activities and language regression.

Mother's Day was on a Sunday; Destructo started showing signs of being “off” on the Wednesday previous, but didn't start really getting sick until Thursday night. Naturally, I kept him home from school the rest of the week. Then the yuck started...but no one else was sick. After several days of my little boy dehydrating, Destructo Daddy and I decided that it was time for acute care.

We had done everything we could. But he only wanted to drink his medical food formula and was refusing pedialyte liquid and ice pops. The formula wouldn't stay down. Destructo's lips had started to dry and crack and while he still had some tears...he was not wetting as heavily has he normally did. And believe me when I say my boy can likely put a race horse to shame.

That Sunday, he gave us a look we hadn't seen since the first time he was hospitalized. It's so hard to summarize absolute misery in a child's expression. And I really don't want to dwell on it. So after getting in touch with the on-call pediatric gastroenterologist in Syracuse who reinforced our belief that Destructo needed to go to the hospital, we were off while Destructo Daddy stayed home to care for Jellybean. I even made sure to bring a letter from I-FPIES briefly describing the condition written specifically for an emergency department visit, as well as packing an overnight bag should they decide to admit or transfer him to Golisano in Syracuse.

Destructo did fine in the waiting room. We had an iPad with us so he was playing on it. He did okay being having his vitals checked. But once we were brought back to triage the problems started.

Getting his weight and height went fine. He's used to that. Temperature went okay too. But then they wanted to get his blood pressure and oxygen levels...both of which require strapping equipment to him, he started to lose it. Despite me telling everyone up to this point he was an autistic, language delayed child with sensory processing issues, the first nurse we encountered kept repeating she just had to get these readings.

After the first meltdown, they transferred us to a different room, and thought turning the lights down would help him. The TV helped a little as well, but what really helped Destructo cope was me downloading YouTube Kids to the iPad so he could watch Thomas the Train videos to his heart's delight using the hospital's free wireless.

It was during this time I realized Destructo was being treated by a Physician's Assistant and not an actual physician. I told the PA that the GI in Syracuse wanted them to run labs and push fluids. He replied that it probably wouldn't be necessary, that they were going to give him a Zofran. If he kept apple juice and a Popsicle down after that we could go home.

So the Zofran arrives, I managed to get him to take it, and it stays down. We ask him if he wanted a red or purple Popsicle, he said purple. I agreed with getting him the Popsicle because I knew he'd refuse it, and they had already been told three times at this point no artificial food dyes. It arrives and he won't touch it. Destructo does, however, keep the apple juice down...despite the fact I knew it would make the liquid coming out his rear worse than it already was.

Grumpy lady nurse returns and I ask her about the labs again. I'm told they probably won't be necessary because he kept apple juice down so the PA was going to start the paperwork to discharge us. I again mention that my son has a GI disease and that the pediatric GI in Syracuse wants the labs done. I mention that no one else is sick in our household and there is a possibility this is an FPIES reaction. The nurse leaves the room.

A few phone calls later I get back in touch with the GI; being that he's on call the hospital has to locate him and have him call me. While I'm on the phone speaking to this very understanding man—who by the way is not Destructo's normal gastroenterologist but is in the same practice and is actually familiar with FPIES—he kindly explains he can't force them to do the labs but hopefully they will see reason and treat him. If I decide to leave Samaritan and go to Syracuse he would take care of my son. I'm on the phone with him for about ten minutes, and the PA pokes his head in the door twice.

By the third time, I'm done speaking with the specialist in Syracuse. And the PA informs me we are going to be moved to yet another room where they can start Destructo on fluids.

Oh really now? I never asked what caused this change of heart. I just wanted him treated. We move to our third room. Three nurses and I had to tag team him but one very upset little boy later the IV is in and he is getting fluids.

It was while Destructo was calmly receiving his IV fluids that I noticed the sign on the wall that said something to the effect of, “Our patients are important to us! Please return the survey we mail to you.” Oh yes. Oh yes, I will.

In the end, my forty-five pound pound little boy took about 800 mL in fluid between two bags. He went from looking gaunt to having pink in his cheeks again. And for the two hours it took for him to receive the fluids by IV...he was calm and laid down on the stretcher. They discharged us and we went home.

About the only thing positive about the visit were the hospital's free wireless and the nurses that helped get the IV in. The grumpy nurse was not among them and I'm assuming they pulled these nurses from pediatrics.

A few days later, I got that survey in the mail. And while they asked me about every employee I encountered, the PA (whose name I was able to put on the survey) got the worst of it. I haven't heard back from the hospital, nor am I expecting to.

Here are some of the gems I left on the survey:

"Did not see a doctor...saw a PA named ***** *****. He was going to discharge my son with no treatment then seemed to change his mind when I was on the phone with one of my son's specialists in Syracuse. Zofran and a popsicle were offered despite me explaining several times my son's aversion to the popsicle. I got a "look" when I explained my son was sensitive to food coloring."

 "This ED has no idea how to accommodate a special needs, delayed language autistic child with sensory issues and multiple medical conditions."

"My son has a rare GI disease* which I brought in literature for (it is in the ICD-10 but not the ICD-9). The only person interested in it was the man in the office that had me sign the consent forms. *FPIES: Food Protein Induced Enterocolitis Syndrome"

 "REFER COMPLEX MEDICAL CASES TO A DOCTOR AND NOT A PHYSICIAN ASST! Fortunately, my son was eventually treated properly."

If I had known how bad this experience was going to be, I would have called an ambulance for my son and had him taken to the children's hospital. It was further away. But one would think that the local, state-of-the-art hospital that brags about all the wonderful specialists it has, its brand new NICU, and all the satellite locations...that they would at least know how to treat a vulnerable, autistic child.

As it turned out, Jellybean fell sick soon afterwards.  It turned out to be strep.  Guess what the PA didn't test Destructo for?

Monday, October 6, 2014

A Peek in the Life of an Autistic Child

Poor Destructo. He's one of those boys that fits a lot of common autism comorbidities...food allergies, gut problems, big noggin. It's such a balancing act, because he's medically complex. Sometimes it's so hard to know if he's sick or just having allergies. If he's having a sensory aversion to a meal or he has a sore throat. If his skin is breaking out because it's an allergic reaction or something else. It's very difficult when he's still limited verbally.

He's had a rough few weeks. Sleep interruptions, runny nose with post nasal drip, behavior regression, and within just the past few days it seems like he is broken out all over with different types of rashes. He is no where near the child he was in preschool. He is combative and has no coping skills. After I'm able to meet with his school nurse and the school psychologist, his IEP meeting is getting moved up. I considered calling an emergency one, and when I said I wanted to, they said they would be happy to move the meeting up from December to whenever I say.

So let's start with his behavior. Destructo has enough language to understand no. We tell him no, he screams and drops to the floor. He is also hitting and pushing when not getting his way. This was NOT a problem during summer session when he was in preschool, but it was in January when he came back from a two week break. After two weeks, he was fine. But the last week of summer session of preschool, I could tell he wasn't getting the sensory diet or his normal therapies. He became unhinged by Wednesday the last week of pre-k.

Kindergarten, however, is a different story. It's now October, and he hasn't adjusted to his new routine (aside from getting on the bus, that he understands). What is different? As far as I can tell, he is not getting a sensory diet. What is a sensory diet? I'll just point you here as I'm a bit limited on time since the Jellybean is napping. Destructo is a very sensory boy, and when you have SPD (Sensory Processing Disorder), being unregulated can cause meltdowns. To put it shortly, certain types of physical input can calm down his internal mental noise so that he can function better. So that is point one for the IEP meeting, adding a BIP (Behavior Intervention Plan) in the form of a sensory diet.

So let's say for the past two months, Destructo has not been getting this sensory diet. Now, I was an anxious child myself, so I can only imagine what he is going through. That anxiety can cause him to not only melt down, but it is also a proven medical fact that mental stress can cause stress on the body, including the immune system. Is it a big jump to think his skin is breaking out because he is stressed? I know people who get hives when they are under duress. Or if not directly causing Destructo to break out, it's just putting enough pressure on his immune system so that the slightest allergen will, as I like to put it, "make his skin explode." Point two of IEP meeting--address allergens in his classroom. I have already sent in his own soap. I might have to put gloves and a long sleeve smock on him for arts and crafts activities.

Sleep interruptions. Monday and Friday last week, Destructo woke up at 3AM. Woke up Jellybean too. Couldn't get either back to sleep. He had a runny nose both days, and if his allergies are anything like mine (and they are, this mommy has allergies and Destructo Daddy does not), he had an itchy throat from the post nasal drip. I still sent him to school both days, because keeping him home would just further disrupt his sleep routine. He gets nap time at school. One of those nights, he woke up extremely hyper; maybe it wasn't his nose but the fact he was extremely over stimulated, which is not a problem when he gets his sensory diet.

Skin irritation. It got really bad this past weekend but started in on Thursday. It started with his diaper area and snowballed from there. I managed to identify two and a half causes and eliminate them. Forehead rash: from his new Captain America hoodie. Arm rash: Mommy's moisturizer! Normally, I use the same stuff he does, because we both have horribly sensitive skin. But none of the usual things were working for some patches of eczema I'd been fighting for weeks on my forearms. So I tried a Bath and Body Works moisturizer. And it helped! Took me three days to figure out it was me. So, I'm not using that stuff anymore. The half cause...something under his nails. So my train of thought...maybe something in art class, a "non-toxic" finger paint or something made with some sort of food derivative got under his nails. Sensory Destructo often scratches at where the elastic is on his pull ups. Transfers allergen and it just explodes from there. I am basing this on my observation that the puffy hives were following nail scratches. As of the time I type this, probably 75% of his body is covered in some sort of rash. But he has no fever...so off to school he went. We're going to the doctor later today, and I had already spoken to her last week about getting some blood work done to update his medical records with. Because prick testing is not going to work with Destructo.

Another thing that ties into the sensory diet is is ability to process and tolerate other sensory input. Destructo has severe food and sensory aversions. During the summer he was able to tolerate sitting at the table for a family dinner, but the past few weeks he began refusing one of his few substantial foods. Because of this perfect storm of food allergies and sensory aversions, he is also on enteral formula medical food to provide him with healthy calories (I could write a whole blog entry about fighting for insurance coverage for that!). And two weeks ago he actually tried a new food in school...but unfortunately, he had an FPIES reaction to it a few hours later, which is when his aversions kicked into a higher gear. Now, he is eating dinner by himself again. This makes me very sad but it's better than him not eating. He went four days living on potato chips and formula before I got him to eat his chicken nuggets again. Though I can't help but wonder if it's because he noticed that Tyson makes their Fun Nugget dinosaurs smaller now.

We are also on high alert for seizure activity. I may or may not have witness a sleep seizure and he was difficult to rouse the next morning. There also have been two episodes of possible gelastic seizures. These are seizures where laughter and or crying usually lasts less than one minute, and is then followed by signs that are more usually recognized with focal seizures. These signs can include eye and head moving to one or the other side, automatisms (such as lip-smacking, mumbling or fidgeting of the hands) and altered awareness. This may last for seconds to many minutes and then stops [source]. Autistic children are 33% more likely to develop epilepsy than normal children, and guess what? It is hard to diagnose because the symptoms can be mistaken for autistic stims and habits [source].

Now all of the above...this is just the stuff Mommy is observing and taking care of. Destructo's school day is pretty busy too! Speech therapy...five times a week. Occupational and Physical therapy....three times a week each, plus Adaptive PE at 10:1+1. His classroom is a 12:1:3+1 BOCES satellite classroom with 14 students in it. Third point of IEP meeting...getting Destructo a 1:1. They told me back in February at his last IEP meeting they were expecting his classroom to have about 10 children and that there would be about one adult for every child, and that we could revisit the possibility of him having a 1:1 in December. Well, I'm not waiting that long. I attacked his IEP with a highlighter a few days ago. I am going in prepared and with my own personal army!

So there you have it. It is any wonder I'm a walking medical record for Destructo?

~High Functioning Mommy

Wednesday, August 20, 2014

Courage - MommaDe

“Courage doesn't always roar. Sometimes courage is the little voice at the end of the day that says I'll try again tomorrow.” - Mary Ann Radmacher

A very good friend of mine used to have that hanging on her bedroom wall. I remember countless times gazing at it, repeating it over and over in my mind and I always thought it was a kick ass quote. I wrote it down, stuck it in my wallet, and had it travel with me. Eventually, I hung it up in my cubicle and then my office desk. And when I became a SAHM, I tucked it away neatly back into my wallet.

It's been my mantra and I can't tell you how many times I've had to repeat that, to myself, just this month. It's been a very TRYING month for me. You see, where I live, school doesn't start until September 4th. And the extended schooling my ASD kiddos get, ended the first week of August. Yeah, I'll let that spin around in your mind for a bit...

The first day of their “summer vacation”, Pixie started her day with a meltdown. That sorta set the tone for the month. And I get it, I do. I understand exactly how taxing their every day life is. I get that way, too. (I suspect I'm somewhere on the spectrum, just based off of observations their therapists have told me. I remember thinking, “Oh... you mean this ISN'T what everyone else does...??” I have sensory issues...BIG TIME. But that's another blog topic all together as is why I believe me to be on the spectrum.)

It's REALLY hard keeping it together and it gets even harder when the tables have turned and you're the statue versus the bird. BTW, when I said “I can't wait until I get old enough...”, this was NOT what I had pictured. Being an adult is sooooo overrated.

It's really tough when your “day job” has your 2 “Bosses” yelling at you for every little thing. By the time my kids go back to school, my arms and legs look like someone beat the crap out of me because Pixie has a tendency to “knead” her hands, elbows, feet, knees, etc. into my own arms and legs. She seeks that soft resistance pressure. I know she doesn't do it on purpose to hurt me, but knowing that and having someone tell you that, doesn't make it hurt any less. That shit hurts! Her favorite? Grinding the balls of her feet into the top of my foot. *Crosses eyes* OUCH.

And everyone around you is demanding attention. Want, need, want, need... It's enough to make you want to scream! You get that lump in your throat that you want to just fall to pieces on the floor and ball your eyes out like your kid just did 15 minutes ago. But that inner voice says “Why bother? It won't change anything.” ...so we muster on...

I can see why many of my Autistic parents have a “Wine Night” or have a few at the end of the day. That'd be a vice I could get into if I was more of a morning person. (Soooo not, btw. Nope. Nuh uh. My cosmic joke because my youngest is up long before Jesus is ready to hand out blessings for the day.) And somehow, having anything of a hangover the following day just doesn't seem like a good use of “me time”. I know, I know... I hear y'all... “Well, then, don't drink that much.” It's a curse, folks. I have a pretty decent tolerance (thanks to my early 20's) and for me to “relax” would take a decent quantity. Enough to cause my following day a previous night's rethought.

Sooooo... what do I do? I write, or at least I used to. I mean, yeah, I have this blog...but as you can tell with the dates, it's not a regular thing with me. My passion is writing fantasy. But for me to engage in pounding out a few chapters, I need to be completely engulfed. No. Distractions. NONE. Not even someone asking me “You going to sleep, soon? You gotta be up early in the morning.” NONE. And in case y'all haven't figured it out, living in a house with 3 other adults, 3 small kids, and two dogs, “Undivided Attention” is its own fairy tale.

I have the few little puzzle games I play. One of which is with my eldest. You see, when Pixie and Lil Monkey head to bed, it's Mommy and Peanut time. I make sure I give him at least 1 hour where it's just him and me. All throughout the day, my attention has to be divided and most days, my two younger ones get a lot of it. It's tough on Peanut and I know and recognize that. So, I make sure that he has me, and to be honest, I do look forward to that time. Even if we both end up falling asleep on each other, it's always quality time.

I used to be a gamer. Yup. I'm one of those Gamer Geek/Girls. I played EQ1 (back when Kunark was released.), EQ2 a week after launch, WoW, Conan, Guild Wars, Dragon Age (sensing a theme, yet?), but I was a console player, too. I'm Generation Nintendo, baby! And my mom is what got me started on it.

That's right... My mom, “Nana”, used to play video games with my brothers and I, when we were little. (Yeah, envy. It's ok. I'd envy me, too. heh)It's also one of the precursors to how my husband and I started hanging out. He had found a chick that played video games and could keep up with him, in them.

So, I don't have vices. I don't smoke or drink and the things I loved to do, don't really have the time to. Some days, I just want to bang my head against the wall, give everyone the finger, and take a vacation from my every day life. The desire to be WRECKLESS is amazingly strong. But, I'm not. I'm responsible... *wrinkles nose* ….much to my inner child's chagrin. And lemme tell you, keeping it together is a fulltime job in of itself.

Why am I saying all of this? Not for pity. I'm hoping that shedding a small glimmer of my own vulnerability gives some of you strength to see that you're not alone. Everything you feel, the anger, the guilt, the exhaustion, the inner voice that just wants to scream at everyone... yup. I get it, I've felt it and wanted to do it, too.

And I'm also here to tell you, it's OK. YOU ARE VALIDATED. (I've learned that hearing those three little words means the WORLD, sometimes.)

Being a Special Needs parent is ridiculously hard work. It's ugly, and raw...and is not for the faint of heart or spirit. And while although some of the rewards are your kids giving you a kiss, a laugh, or a smile, sometimes the greatest reward is learning that you have at least one person that “gets it”.

I do, darlin's... I do. *Big ol' huge internet hug*

Now, if y'all excuse me. I have a game of Bejeweled Blitz to play with Peanut.

Tryin' again tomorrow,

Wednesday, July 23, 2014

So Sick of Judgement

I apologize for us neglecting the blog. Spring break and summer are busy times for MommaDe and I. But something happened recently, and this Mommy is perseverating on it when she knows she shouldn't.

A few entries back I wrote two blogs about being judged by a non-parent with no educational background. Well, it's happened again, and the guilty party is the mother of three neurotypical children. Her husband and the children's father is an educator.

It all started over a week ago when I decided to start a second fundraiser to raise money to get a new iPad for Destructo (the first fundraiser was in 2012). The charging port went on his old one, it's out of warranty, fixing it is expensive and only warrantied for 30 days. That didn't seem like a wise expense to me since I had the same problem with it last year before the service plan expired. So I set up a small $1000 fundraiser. Because, honestly, what seems a more logical use of money: $300 to repair it which is only warrantied for 30 days or $1000 to buy a replacement with an updated charging port that isn't likely to have the same problem with a three year accidental coverage service plan?

I posted the link of the fundraiser to my Facebook, then the Facebook drama began. Without mentioning names this mother wrote a little rant about how I shouldn't be begging for something my son wants, because an iPad is a want and not a need. That I should listen to people and get it fixed. Without getting mad I did my best to inform her that this is a need for my child. He was just starting to properly use a text to speech app. It has helped him with his fine motor skills. It is teaching him how to read. I also told a little bit about my son in my reply to her posting, for the benefit of those who don't know my child. If anyone had any questions that I would be happy to answer them. I also said that I knew she was a good mother blessed with normal healthy children.

I don't remember the whole posting, but among her retorts, I was told that I should go out and get a job because it was a good lesson for my kids (because oh, she had been there) and that no one told me to have another child (which is keeping me from working). That my son gets free food, free school, and free insurance and that I shouldn't be begging for money for this WANT. Also, that one of her children is in speech therapy due to a lip or tongue tie.

No one told you to go and have another child. This would be referring to Destructo's little sister, Jellybean. She's now 16 months old, and I'm happy to report, seems pretty neurotypical. She's also been breastfed from birth and hasn't weaned yet. So no money spent on formula. And almost next to nothing spent on jarred baby food because she refused almost all of it, preferring to eat whatever Mommy's eating. Is she keeping me from working? Partially. Why Destructo Daddy and I decided to have another child is no one's business. Implying that we shouldn't have given Destructo a little sister because we don't have the money is pretty fascist--this woman even said she is tired of people playing the system.

Yes, I'm a stay at home mother. I quit my low paying retail job when Destructo was just a few months old. He needed me more than that big box retailer needed me stocking shelves. Any parent of a special needs child will tell you that taking care of a special needs child is a full time job. Destructo's first three years were full of doctor's appointments and Early Intervention therapies. So full to the point that I had to use an electronic calendar to keep everything straight. As he got older there were less doctor's appointments and he transitioned out of EI and into a special needs preschool. Unless he gets a normal childhood ailment, his doctor's appointments are down to three per year: his gastroenterologist, his developmental pediatrician, and his normal pediatrician. You should see the piles of his medical and educational records. I'm thinking of switching from a filing system to a binder system because there is that much of it.

Free school, free food, free insurance. Destructo is classified by our school district as a Preschooler With a Disability and a physician's diagnosis of Autism, therefore, the school district would be paying for his education anyway, regardless of our income level. Free food? Yes, we receive WIC and enough food stamps to by one week's worth of groceries. But that is the only social services we receive other than our state supplied healthcare. But you know what my son eats? Tyson dinosaur chicken nuggets, wheat toast, french fries, potato chips and some other assorted junk. He's allergic to dairy and soy and likely needs more intensive feeding therapy than he is already receiving, which leads into why I have to fight for insurance to cover his enteral formula. Which, by the way, costs $200 per week. Imagine if we had to pay that out of pocket and without insurance. Even with that, he's hovering just at the 45th percentile for weight.

One of her children--the one who is nearly the same age as Destructo--is in speech therapy. For a physical difference that can be corrected by surgery (that I know may need to be repeated). Hey, she's getting her child the help that he needs. That's good. But it doesn't compare to my child. Destructo can read on and possibly above a kindergarten level but socially, linguistically, and emotionally he is closer to a two year old. I've seen pictures of her child riding a quad. Destructo struggles to pedal a bicycle with training wheels, and that's if he's not getting distracted by the wheels turning, he gets so excited he wants to stop and watch the wheels turn (it's one of his stims). I'm pretty sure she can hold a conversation with her child based on both parents' amusing social media postings. Destructo is nearly five years old and his progress has been amazing--but we still struggle to communicate certain things. Destructo communicates mostly through scripting, whether it is copied from something he saw on TV or a social story he is taught at school. Yet, if I ask him if something hurts or how he feels, he just stares at me blankly.

Stop using his autism as an excuse for everything. Well, that sounds familiar. Sounds a lot like the last person who attacked my parenting. The kicker is, these two people know each other. Because that judgmental asshole I blogged about months ago is one of her husband's best friends. The educator husband, naturally, has remained publicly quiet. I don't blame him. I know you can't choose sides against your spouse and I would never expect someone to do that. But I hope he can at least educate her a little more on how the school system works in regards to special needs children. The rest of the fall out? A few "mutual friends" removed me from their lists. They were closer to acquaintances anyway, but it makes me worry for other people in that particular social circle. If anyone in that group has a special needs child, will they be shunned by the parents of the neurotypical children?

Coming soon...a blog entry on why my son needs an iPad, and how how he has been affected the past few weeks by not having one.

--High Functioning Mommy