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 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 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?