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?

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

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,
MommaDe

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

The Win Category - MommaDe

The Win Category

I've used this phrase, more than once, and dealing with a wide range of things. Everything from “A day with 0 meltdowns” to “losing 3lbs” has been known to go into this mysterious category. And it's something that is really easy to keep and you don't necessarily have to be a parent of a special needs child to keep one.

What is it exactly? It's a revamp on an old mindset: think positive or, find one thing to be grateful for, every day.

It's not an easy thing to engage, especially if you're dealing with depression. And it was something that I HAD to start...had to. I was slowly slipping down the spiral of melancholy and into the dark pit of depression without so much as a ladder to get out.

I was dealing with a lot. Not to get into a huge long story about why I was this way, I will give you a summary of what was going on in my life and why I started this spiral.

1. I had three kids in as many years and my body wasn't done with the hormone fluctuation. Just as soon as I would get some wiggle room, I would get pregnant again.
2. I had buried two close friends in two years. They were young and their deaths were sudden and extremely tragic.
3. My parents' 32 year marriage fell apart. My dad just walked out on my mother for someone he barely knew. This is still a raw spot with me and I don't talk about it often. I haven't talked to him since the day after he “dropped the bomb” and I don't plan to, ever again. My reasons are for another post. (This is something that I am still dealing with.)
4. I got the diagnosis for Pixie (which we had suspected). Somehow, “knowing” something and actually having it told to you, are two completely different experiences. A fresh hell of images began to flood my mind of what kind of bullies my kids are/were going to face. I have physical scars of the encounters with my bullies. It's still something that is in the back of my mind, but I can't worry about that now. Hopefully, it will be a few more years before this circles back to my life.

It seemed that Life was pulling its punches, one right after another. The inevitable happened. I wasn't sure if it was PPD that had gotten worse or if I was just in too much emotional turmoil to recover from. I didn't get help, and looking back, I probably should have. I had become a miserable person. I was angry at everyone for everything and then just turned the anger inward when I got tired of complaining the same crap over and over again. Everything reflected it. My posts on FB/Livejournal, when people asked me how my day went, I always gave them a negative response.

But as anyone of special needs kids can tell you, you don't have the time to be in a funk. I needed to be on my game, from the time they woke up, until the time I hit the pillow. They needed me and I needed to get out of my personal pit.

That was when I developed The Win Category. Now, I'm not saying that this is for everyone nor am I trivializing anyone's depression by saying this is a “simple fixit”. Please don't misunderstand me. Depression is a real life sucking beast and it should be dealt with on an individual basis, however YOU feel you need to. This is how I dealt with mine.

I had a friend of mine, whom I've known for quite a number of years, tell me that each day I was to pick one thing to put into this “Win Category”. He said “Doesn't matter how big or small, just put it in there. If you have to write it down, do it.”

..so I did. And what I had found was the more “Wins” I put in there, the less I was thinking about the bad stuff. The negative “funk” my mind was in slowly, started to slip away.

I had my bad days, sure. Usually the Meltdown Days or days where I had hardly gotten any sleep, made it extremely difficult for me to put anything into that category. But, the more I added to it, the easier it was to pull myself out of it.

Anything can go into it. Anything. “My favorite song came on the radio.”, “I found a $5 in my winter coat pocket I forgot about.” I think I even put in there once “I remembered to take my vitamins.”

Every thing that made you smile, made you laugh, and is positive, you put in there. Every day, you need to write at least ONE thing in the Win Category. You are NOT allowed to make a “Loss Category”. It defeats the purpose of what you're trying to do.

Eventually, you start to see a pattern emerge and you add more “Wins” after a while. Give it a shot for two weeks, and see if you can tell the difference.

If you find that you can't put anything in there, do an assessment and find out what keeps you in your mind funk. Once you nail down what triggers your depression, you can take steps to rid your life of it.

So... when I say on my Facebook posts “This was put into the Win Category”, y'all know the whole story behind it.

Here's to the “Wins”,
MommaDe

Meltdown Vs. Tantrum - MommaDe

Sorry it's been a while, y'all. Been dealing with a few things in my Household O Crazy. Holiday Season starts at Halloween at my house because of me being Pagan and I live in a Christian Household. (We celebrate quite a bit in my house. =)

Meltdown vs Tantrum

Many of you have asked me the difference. I'm no medical professional and I'm basing my knowledge off of my two ASD kiddos. And as anyone who has someone in their family with ASD or is on the spectrum themselves, the saying goes “If you know one person with Autism, you know one person with Autism.” There are so many different diagnoses with this learning disability and it effects everyone differently. This is why they say that.

However... if you know someone who is on the spectrum, you are familiar with the term “meltdown”. What is this, exactly? Well... let me paint a picture for you...

You are in a restaurant. Most of us are familiar with the setting. The dim of the conversations going on in the background, the sound of glasses tinkling, dishes banging, something drops in the kitchen, waitresses asking “What would you like”, people asking to be seated, what the specials are, forks and knives banging on plates, kids being kids, parents yelling at kids, babies crying, and throw in the smell of food for good measure. Now... imagine that you can't shut ANY of that off. Your brain can't focus on just one thing. It takes in ALL of this at the same time.

This is what its like with Autism, only, this is every day in every situation. They can't stop their brains from focusing on EVERYTHING. If you're at your own house, they hear the heat or AC on, they hear each TV on, they hear the plinking of people on laptops or computers, video games going, conversations, the smell of food cooking, the smell of whatever it is you decided to spray in your house to make it smell good, the sounds of the dryer or the washing machine, the shower, the dish washer, the coffee machine. This is their life, 24/7/365.

What's a meltdown? When they can't take it anymore. When all of the sudden everything is just TOO much for them. Or, if they're in a new situation and none of the sounds and smells are familiar. Now they have to add something NEW on top of everything going on in their mind. Their brains snap and they cry, then “stim”, they do everything they can to JUST. QUIET. DOWN...and they can't.

So yeah, if you see that kid in the supermarket crying for no reason and you see the exasperated parent scooting them along, instead of thinking to yourself “Spoiled brat, they just need a good swat on the bottom”, ask if there is anything you can do to help.

Tantrums? When you tell a kid they can't do something or get something they want and they whine to get it or they throw a fit. That's a tantrum. And yeah, my kids do that, too. Just because they're Autistic doesn't mean that they don't go through the same social developmental milestones as every other kid. They just hit them at different points of time in their lives, away from the typical ages they are supposed to hit them. (And let me tell you, when they did hit their “Terrible 2's” that was just an utter joy...*note sarcasm)

As parents who have kids on the spectrum, it's up to us to figure out which is which. It's an exercise in detective work. Every day.

Tantrums? I don't even bother acknowledging the behavior. They throw one, I walk away. They are doing it for attention and I don't give it to them.

Meltdowns? Depends on the kid and the situation. When Pixie goes through a VERY bad one, I just sit next to her, calm. I don't make a sound. I don't touch her. She feeds off of my energy and it calms her down because I am calm. When it's a small one (and if I am able to get to it before it turns into a big one), I sing to her. I sing anything. She focuses on my voice and is able to shut some of her mind off. It helps. (I'm just glad she doesn't critique my crappy singing and isn't picky on the quality.)

For Tiny Man (Lil Monkey), removing him from the situation into another room seems to do the trick. He is auditory defensive so changing the sounds help. He doesn't appreciate the singing, apparently.

Autism has taught me many things. One is patience. The other is to drop the judgmental mentality when out in public. I used to be the one that would roll their eyes and think “I guess swats on the bottom are out of style.”

No... not anymore. I give the mother or the father a knowing look and ask if I can help. Sometimes they're surprised that I recognize the symptoms. Other times they shake their head and usher their kid away to someplace quiet. One time, while putting my two ASD kiddos on the bus, a little boy was going through a VERY bad one.

I signed to him if he could speak. He verbally asked “What's that?” So, in the few minutes it took to get my kids on the bus, he learned a few signs and forgot what got him to meltdown.

Also, he enjoys Itsy Bitsy Spider... even if it is “off key”. =)

On Those Who Judge, Continued

Wow, the kids have been keeping me busy. Also, Destructo's Halloween costume. I'm making it myself. More on that later. This is a follow up to my other blog entry, which you can read here.

So. As I mentioned in the last entry, Destructo and I had a late night. When he goes to bed around 3 AM he would often crash until 11 AM. I awoke the next morning to Destructo's godmother coming into our bedroom and telling me not to freak out when I got out of bed, that she was taking Destructo and I out after I saw what was on Facebook.

This, was in my inbox.

The names are of course blocked out, but Red Person also copied Destructo's godmother and the wife of one of our mutual friends. Destructo's godmother is a special education teacher. The second person is a mother who saw the comment the night before. The second person, replied first.

I didn't reply until several hours later, as can be seen by the time stamp. Destructo and I went out with Destructo's godmother, because she's awesome and she knew I was under enough stress as it was. Also, I didn't want to fly off the handle at the jerk, either.

Destructo's godmother stays out of the group conversation. Red person came back with the following, which I didn't dignify with a response, and if I had--it would have been everything I included in my previous blog entry on this topic.

I will admit I am still steaming a bit about it, maybe it's because I expect this person to realize how far their head is up their rear end and apologize to me. On another level, I know that will never happen. Sometime in the next year after this, I became friends with MommaDe, who also knew Red Person, basically due to our overlapping social circles.

On the other hand, I also feel sorry for Red Person. I have no idea what they're doing with their life now, and I mostly don't care. But--I do worry for those in his future. What if there is a special needs child in his future? Let's do a thought experiment. Red Person uses the generic term "issues." And when I've been thinking about this blog this occurred to me: how does it sound when you replace "issues" with a solid diagnosis? Mind you, the whole point of my previous entry was that all signs were pointing to Autism.

NO ONE is going to care about his issues but you and him. NO ONE is going to care about his Autism but you and him. NO ONE is going to care about his Cystic Fibrosis but you and him. NO ONE is going to care about his Diabetes but you and him. NO ONE is going to care about his Down Syndrome but you and him. NO ONE is going to care about his Manic Depression but you and him.

And this, this is what worries me should this person become a parent one day. Because if this is how this person's mind works, I fear for the quality of life of their child should they have a lifelong medical need. Am I over-reacting? I don't know. I'm extrapolating with the information I have, and this is the conclusion I came to.