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 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 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.” 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

Tuesday, March 11, 2014

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.” 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”,