Thursday, February 28, 2013

He's not a number

I often wonder if other parents with children on the spectrum - or with some form of learning disability - feel that gut wrenching awfulness whenever they get some form of test results on their child. The kind of tests that are not medical in nature, almost always coming from school. "Intelligence" tests, benchmark tests, report cards, other comprehensive evaluations...

With the exception of report cards, I think I've always had that sick feeling. That feeling of "so this is where you want to place him in the scheme of things?" No matter how many of those pieces of paper come into my house, it's punching me in my gut.

It shouldn't; it really shouldn't. Morgan is not some "well below level" on a piece of paper. He's an intelligent kid and anyone who spends time with him knows this. So what if standardized tests are not his thing? They aren't good for a lot of kiddos, neuro typically inclined or otherwise, right? So, why does this crap even matter?

I suppose it matters and upsets me because I know that someone, somewhere, is going to see my kid's score and think he's "less than" when I know good and damned well he's not. Someone, somewhere, might think that he's not capable of doing something when his teachers and I know that's not true. Someone, somewhere, might think that my completely wonderful boy doesn't deserve respect for what he's accomplishing because he didn't nail a test.

This morning I've been pouring over Morgan's IEP and the rest of his file. Every test result is in it. Every single upset in an IEP is there, peeking out. Every fight I can remember. None of those papers are representative of my child.

Maybe it's because I've been on guard for the last seven years of his life that things like this matter. I've wanted to protect him even more ever since a playground mom told me "You know, your kid ain't right." Yes, stupid people shouldn't get to me, but I have a fiery temper and she was one of many since then that could not see there is nothing wrong with Morgan wanting to sift sand through his fingers repeatedly to calm himself (it's better than what her kid was doing- snark), or peep like a train, or play by himself, or (now) introduce himself and tell someone they're pretty. 

Maybe I'm selfish and just want him to prove the jerks, the so-called "experts" wrong. My psych books would tell me I'm projecting my fears and I know I am. I keep everything hidden from Morgan because I know very well what it's like to have someone tell you your best is not good enough. His best will always be good enough for us. It's the system that is not.

There are a lot of maybes. There are a lot of asinine statements I can make to myself or that others can make for me.

At the end of the day, though, Morgan's not a number any more than any other child. His intelligence, hard work, and dedication cannot be measured on paper. He works harder than any other child I know and seems to be happy. He loves school. He loves learning.

I won't ruin that for him or allow anyone else to do so. He's a child, not a number.

Tuesday, February 26, 2013

Happiness in the form of gummi worms

As the boys have gotten older, we've been giving them chores, Morgan more than Bailey due to age. Morgan has to take out the trash, unload the dishwasher, pick up his toys (this does not always get done judging from the atomic bomb of toys in my home), and take his dirty clothes to the laundry room. Bailey assists his brother with the trash, picks up toys (see previous parentheses), pick up dirty clothes, and sometimes feed the dog.

Both kids (and I) are seriously lacking in the putting away clean clothes department. Anyone who knows me knows I loathe laundry and dishes more than any other chores. Give me vacuuming, cleaning windows (which reminds me...), dusting (crap), or anything other than laundry! Truth be told, I'm not the greatest housekeeper. I'd rather be playing with my children or reading a book than making sure my home is ready for Southern Living.

So, all of that being said, three weeks ago I put two baskets of clean and folded clothing into the boys' room. Yes, three weeks. I decided I was striking on putting away their clothes. They're old enough, tall enough, and coordinated enough to put away their own clothing. It's a life skill for both of them, like making a bed. But still, the baskets sat. My husband and I told the kids that if they (finally) didn't put them away by bedtime of last night, there would be consequences... we hadn't really hammered out that thought yet. We honestly hate punishing our children and the point of the entire exercise was so that I wouldn't have to do it.

After Morgan did his homework yesterday and before dinner, he put away his clothes. His brother... well, Bailey was pouting, playing, just in general not doing what I'd told him. The child had even convinced his brother to lock their door so they could "work in private." This means slack off in a private room.

I did not want to yell. I probably yell too much and I do not think the other people in our building appreciate it. I especially did not want to yell over stupid clothing.

We had the boys eat dinner. We reaffirmed to Bailey that he had to put away his clothing, HAD to. There would be consequence which we had not thought out!

Morgan came to tell me that Bailey had not put away all of his clothes. "Seriously?" I thought. The child, I think, loves gaining attention by not doing what he's told and I really did not want to go into his room and yell. I also did not want to cave and put away the clothes myself. I was eating sour gummi worms, Morgan asked for one. I had an "ah-hah!" moment. I told him sure and I'd give him two if he'd go and supervise his brother. I thought that if Morgan was just there to encourage Bay, the clothes would be put away.

Morgan said, "I'd be the boss?!" "Yeah, bud, but no being mean, no being bad, okay?" "OKAY, Mommy!"

Off he went with his sour gummi worms. The clothes were put away within five minutes. We, as a family, were able to relax in our clean(ish) - I'm working on it! - living room, watching television.

I should have used bribery weeks ago.

Monday, February 25, 2013

The hitchhiker's guide to Autism

*This entire post is meant to be taken as a joke and not as offense. It is meant as humor, albeit sarcastic humor and I'm sorry if it is offensive to anyone but neurotypical parents of neurotypical children that treat other parents of Autist children, or Autist, adults in any fashion other than with respect.  This is satire.

With Autism, you're projected onto another planet, a planet that needs a guide book in order to avoid the land mines, navigate the countries, and a translator for the jargon- which neurotypicals usually come up with to confuse other neurotypicals. Someone, somewhere, is screaming at you, judging you, and honey, it is never going to let up. Please, allow me to continue.
The thing about planet Autism is that the planet, like Earth, is divided up into different countries. That jargon? It comes with it's own inner jargon. Subcultures of people have their own secret societies, I swear I'm speaking the truth.

The planet Autism is credibly complex. The puzzle shaped countries, which were designed by some long forgotten dinosaur, are different colored. There is debate within the UA (United Autism, which is not actually united) as to if intentional earthquakes should keep occurring in order to severe the edges of the countries so that the said countries will no longer be puzzle shaped.

 The Autists themselves, you know, the people who created the planet? They've up and left because the parents (some of whom are called "allies") and doctors keep pissing them off. So, they keep sending out secret signals (think batman) to the little Autists to come join the gang when they're old enough. They're called ASAN and I hear their rocket ships are pretty cool. Also, they have a secret handshake. 

As to planet Autism...
The largest amount of money is concentrated in AS, which shows up as blue on maps. A lot of parents belong to AS, but the only Autists in that country are children. After the age of 18, all children are booted off the country to seek their own fortune. At least, that's the rumor, no one really knows for sure, it's a secret, like that door thing on Lost.

Careful, one wrong step in any of those countries and you're liable to hit a landmine. Tell someone that you've been to AS and Boom! - you might be a goner.

You do the GFCF approach? Oh hon, let me take you over to that island, where the inhabitants are only allowed to eat things without faces on Tuesday. They're colored a milky white on the map out of irony.

The Bio-Med island is tricky and actually has no landmines because that could contribute to further contamination. This island is green.

The environmentalist side of the planet is pretty big, and is colored red- they're angry at a lot of people.

The geneticists are shaded in purple because I couldn't come up with a better color.

The manual for jargon/acronyms is incredibly complex and keeps growing. Terms like GFCF, ABA, IEP, 504, DAN!, ST, OT, PT, STFU, WTF, PECS, ERISA, OMFG, etc, are common. Plus, use respect when addressing any and all inhabitants. That being said, not all inhabitants actually use respect.

On planet Autism, the water is safe to drink. Chewelry is in all gift bags. Stimming is encouraged, or should be at all times. Sensory gyms are everywhere. Every country is a wonderland for each subculture of people because each subculture not so secretly thinks that they are in the right place.

There should be no judgement, but there is, because there are still parents inhabiting this planet. There is civil war, really (see the landmine comment, that crap's real).

Even after years of living on this planet, I am shocked by the amount of judgement. Even though I am not from the area of Bio-Med, I try to not judge those that are; however, some Bio-Meds judge me. I love those from planet ASAN and seek to soak up their language, costumes, and knowledge. I'd kill for their handbook. However, there are those from the country of AS that do not feel the way I do and that confuses me.

We basically speak the same language, even though we all need the guidebook at all times. We all inhabit the same planet. You'd think we'd want the same thing: making the world a better place for those we love. But no, instead we've had to drive the Autists off of this wonderful planet and force them onto a planet of their own, therefore creating an us versus them mentality. I really do not understand that.

We might never cross the divides in that universe. I'm keeping my passport handy in case we do because, really, I want to be able to visit my kiddo on planet ASAN.

* I forgot to mention the rumors of a secret island where Autists and parents live together in harmony. It's called Imagine. In Imagine, people actually get along. They lobby for equal rights, agree to disagree about major issues, and, in general, live in harmony. They really just want to break down barriers in order for Autists to gain respect that they deserve. Imagine might be real. I hope it is because I'm in love with this idea. 

Friday, February 22, 2013

The Not Warm and Fuzzies

I sometimes will describe Morgan as having a "fuzzy" day on my page(s). I don't think people actually understand what in the world I'm talking about (not exactly an uncommon event), so I thought after this week, I'd try to break down the fuzzies for you.

We first coined the phrase "fuzzy" around the start of first grade. For years, Morgan would have "off" days where he would stare vacantly, not seem "with it," and sometimes speak in gibberish when he'd been legibly verbal for a while, and there was more.
  • vacant staring (more than usual, almost trance-like)
  • inability to articulate
  • Gross motor skill/fine motor skill slow down- in lay terms, he walks differently, writes differently, seems to lose skills he's retained for a couple of years. Normally, he'll regain them; his handwriting will remain "off" for a few hours to a couple of days
  • INCREDIBLY crabby or emotional, sometimes physically aggressive with me- this is rare
  • Stims and tics are more pronounced and often self-injurious; dermatilliomania is more present

As of first grade - last school year - he could really verbalize what that this felt like and he termed it "feeling fuzzy." Fuzzy sounds better than how some would describe it, so we took it and ran.

Fuzzies According to Morgan:
  • "head feels stuffed with cotton balls"
  • "I can't always hear good"
  • "I feel dizzy sometimes"
  • "Words feel funny in my mouth"
  • "Ants are in my head" - this happens sometimes after neural seizures
  • "I get stuff wrong"
So, what is the cause of the fuzzies? We don't actually know, we can only guess. No doctors have ever taken us seriously enough to investigate them and a nurse once told me, "Well, he is autistic and you are fairly opposed to medicating him. There isn't much to do." Maybe she was right, but I doubt it. We've tried to pinpoint when, where, and how these occur in order to either avoid them, manage them, or manage the world around him so that he's comfortable during a fuzzy period.

Possible Causes:
  • Lack of sleep
  • changes in school/home
  • stress/trauma
  • sensory over-stimulation
  • neural seizures
  • illness
Some of these things we can avoid, some we cannot. Lack of sleep? Well, we try to put him and his brother to bed at the same time every night as a sanity saver to everyone in the house. However, his little brother lives to party at night and they share a room now, so oftentimes, that can be hard. Changes in school and home can be slowly introduced, but not always. For instance, during the holidays, I try to slowly decorate over time so as to not overwhelm Morgan. For school, I have standards in his IEP such as seating preferences, but other than that, I have zero control. Sensory over-stimulation, neural seizures, and illness I really cannot control. I cannot always predict what will overwhelm my child, seizures happen when we least expect them, and kids are walking talking petri dishes. We take the changes in life and try to roll with them.

We have to send him to school sometimes during a fuzzy period. That always worries me. What if he has a test? Morgan is an A/B student who takes his grades very seriously- a poor grade will result in his stimming for a long time and a meltdown, guaranteed. Gets smart with an authority figure? Has a seizure? All of this has happened and I try to be on top of the fuzzies. I write notes to his teachers when he's having a fuzzy day so they can be prepared. Yes, I am "that mom" who writes a thousand and one notes during the school year. I warn the teachers at the start of the school year.

This week, I received a call from Morgan's school. The lady on the phone told me my son was in the office (gulp) and was complaining of a bad headache. She was nice enough to put Morgan on the phone. He told me he had "ants in his head again," a sharp pain in his head, and felt fuzzy.  That he felt bad enough to want someone to call me was a signal to me he needed help. When I picked him up, his pupils were enormous, he was clammy, had gone into a meltdown (he cries uncontrollably during his meltdowns), had requested the office door be shut against noises. I was seriously proud that my son had made requests for his own comfort and well being. A year ago, he would not have been able to articulate this. 

Do you or your child have fuzzy days? If so, how do you cope?

Wednesday, February 13, 2013

I know the perpetual child, it is not mine

*contains cursing, sarcasm

A lot of hell gets raised within the Autism community (and for a great reason) that Autism isn't a child only diagnosis, should not be discussed as such, should not be promoted by charities/organizations/parents/politicians/etc as such and moreover, that Autism never, ever, EVER goes away. Yet, people, neurotypical people, seem to be fine with discussing Autism as if this is only something that "afflicts" children. So then, what happens to Autistic children? Do they, as some recent -and panned- reports suggest "grow out" of Autism? Um, no, no they don't. If Autistic children did grow out of Autism, then I doubt that there would be so damned many Autistic adults running around the planet and writing so many blogs, two of which are pinned to the right over there. >>>

I think I know why neurotypicals like to promote Autism as a child-based "disorder" and that's because it looks more tragic and therefore stands to gain more attention, more money for organizations, etc. I don't get it, but it makes sense in only that fashion. Yet, it discredits all of the adult Autists I know. This thinking discredits all of the adult Autists, period.

However, that's not what this post is really about. No, this post is about something that is really, truly bothering me and doesn't have so much to do about Autism.

This post is about something which must be stopped because it is the true epidemic, not Autism.

I have found the perpetual children hiding in society. They are in our midst. You might even know one. Or two. Hell, you might know several dozen if you're truly unlucky.

Perhaps upon first or twentieth or, God forbid, one millionth, glance the perpetual child seems fun and always has something loosely planned. That plan is always something better that what you yourself could come up with. The perpetual child may not appear to have a job, yet always has money. This does not make the PC (sorry, that was getting to be a pain to write) wealthy by any means. The PC might seem like your friend and will always be surrounded by people. The PC will be the wittiest person you meet. The PC might take place in environmentally friendly activities or profess a love of organic farming; these things seem "cool" and gives the PC rights to wear witty and chemically faded shirts proclaiming him/her as the crunchy granola type.

The PC must love beer. That beer must be better than yours, always. Same goes for any other alcohol choices. The PC is going to be snarky. Snarkier than me snarky- this is saying something, people.

So, what is "wrong" with the PC? Well, on first, twentieth, or millionth glance, nothing really. However, then you really get to know the PC. Maybe it's a feeling that tips you off. Maybe it's when you cross that person. Perhaps the PC doesn't get his/her way and, like a child, pitches a tantrum- which they often and always will. That's when you get to dissect everything.

The reason why everything is always loosely planned? Something better might come up. You can't come up with something better because likely, they ripped it off from a professional or Pinterest.

The money? Parents. This is pathetic especially if the PC is over college age. The circle of friends? That is ever evolving due to the PC not wanting people to catch on to his/her truest of true nature, this could be dangerous and would thus end any and all friendships. You know, people talk.  God forbid if you have a child who is in some way "less better" than their child, because you will hear about it in the form of subtle digs... though you'll never be completely sure- you'll always just be a bit paranoid.

The witty remarks? Double edged sword which goes along with the snark. Be careful of anything that PC says to you. Likely or not, it's an insult disguised behind a compliment.

Organic farming/environmentally friendly? See Pinterest comment. For the beer remark, also see Pinterest comment.

The PC actually leads a shell of a life. Those the PC seems to have it all, he or she does not. The PC lacks more than the most basic of social skills and graces. The PC might be highly educated, but incredibly stupid for, if he or she were really smart, he or she would know what matters most in life is being loved for who you are and not for how others perceive you. The PC does not allow anyone to scratch the surface of his or her existence because that would be allowing someone too close, too deep. The PC is, without you really knowing it, the most shallow and lonely person you know. Also, the PC's life expectancy might run as short as 40 years or as long as 90, but always will end lonely and ostracized.

Why do I choose to write about this? Because it hit me not so long ago and keeps hitting me that some of the very people who are supposed to be our closest allies are, unfortunately, the furthest things from that. They are the real perpetual children in the world.

Thank God my son and thousands like him are growing up every day. Hey, maybe that therapy is giving him a jump start on life skills!

Tuesday, February 5, 2013

A puzzling piece

Editor's note: I am honestly not trying to offend anyone within the Autism community with this subject. This is only me, as a parent of an Autist, stating how I feel about those puzzle piece awareness symbols. 

Unless one is living under a rock, then one would know that the symbol for Autism Awareness is a puzzle piece, or a series of interlocking pieces, or even a series of puzzle pieces with one missing, sometimes a piece just hovering over it's space. Should be a small thing, right? Well, not so much, because there are also the slogans. Personally, I find some, if not most, of the slogans associated with those puzzle pieces incredibly insulting to my son. Here is a small sampling:

"Until the pieces fit.."
"..solve the puzzle of Autism" 
"Figure out the puzzle."

I could name more, but you get the drift, right? All of those slogans, while catchy, are just slightly <sarcasm> offensive to me. They're incredibly offensive to most self advocates, if recent blogger chatter is any indication. Actually, that's not true, it's not just recent, it's been going on for years. 

"I'm not a puzzle, I'm a person." 

I've read where some - NT and Autist - think that this is a very petty thing to argue over... but I disagree. Actually, that's not entirely true. Personally, I'm a fence straddler. I can see where the self advocates and even some of the parent advocates are mad. Being represented by a puzzle piece can be insulting, especially when those signs, jewelry, clothing (let's face it, anything you can slap a slogan on) show a piece missing or not fitting.

Just think, as a neurotypical, if someone were to describe you and anyone like you as a jigsaw puzzle with a missing or improperly fitting piece. This, to me, indicates that someone out there believes that you are defective. I don't believe my son or any other Autist is defective. Would any of us say (out loud) that, say, a breast cancer survivor is defective? Okay, bad correlation between Autism and cancer. How about ADHD? In this age of PC talk, how have we done this?

On my own flip side, I promote Autism Awareness Month (all year long) and wear Autism Awareness clothing or jewelry to put in society's collective face that someone I love, my son, is Autistic. It's my prerogative to do so and it's better, I think, than for a random person thinking him psychotic or worse, stupid, when he or she hears Morgan "peeping" a yes to me or sees him stim.

How does he feel about being represented by a puzzle piece? Well, Morgan loves puzzles and patterns. To him, I think, this is just a cool thing to be represented by. However, he doesn't seem to care for the imperfect ones. Also, I'm picky... See that picture, up in the right hand corner? That's my whistle, my lanyard, my awareness ribbon. Please note that all of those pieces are perfectly matched up.  I won't wear or promote any puzzle "stuff" that isn't perfect. So, maybe Morgan has picked up on that from me.

Do I believe that Autists are perfect? No, they're human, just as my son is and therefore prone to make mistakes. However, as I said, they aren't defective.

My thinking has been that while, yes, an Autist's brain is a mystery to the neurotypical world, a puzzle if you will, it is not the Autists that are missing the pieces, it's the neurotypicals. I've always thought that Morgan, and those like him, probably have an extra piece to their neurology that I and scientists weren't figuring out. Hence, the name of my blog. I'm trying to decipher my son. It's alright with me if I never get my answers because I'm finding the journey very fascinating. Plus, I don't look at my son as problem that needs to be solved.

I think though, this time, with the puzzle pieces, the Autists might beat the neurotypicals to an extent. I have come across several blogs talking about "taking back" the puzzle piece as a symbol for Autism. Changing the singular puzzle piece color of blue that we all associate with Autism Speaks to something else. Whether this was in jest, I do not know, but they have my support. 

Autists are speaking and it's time we listen to them

How is it we have an entire movement for awareness and acceptance when a good majority of the people that seem to be leading it aren't listening to the people that matter- the Autists? Granted, we have some Autists that are gaining ground and fame. Heck, our government even let <gasp!> two Autists testify during last year's congressional hearing on Autism! Of course, they were railroaded... and called burdens, along with the rest of the "Autism epidemic/disease"- good going on that one, REALLY... but I guess that's not supposed to matter since this movement, that hearing, is for  them, correct? (Sorry, that was snark)

However, parents and "experts," we're missing the less famous Autists. The ones whose opinions should count the absolute most to us- our kids, our family members, our friends

We need to know that we, as a society, do have eloquent, or even non eloquent,  Autists to represent Autism Awareness. Yet, somehow, their voices seem to get drowned out by the fervor of neurotypicals, officials, parents and scientists alike. It seems to me, that any time an Autist, or a group of Autists, raises their voices loudly in protest, a neurotypical (or several/hundred/thousand) tell them, "Hush, you're not supposed to be able to feel that way." Or something to that extent. Is it any wonder, then, that a lot Autists don't appear too happy with a lot of neurotypicals?

I have a favor to ask of the Autists in the community that I am friends or friendly with. Please don't get angry with the neurotypical parents who are trying to learn from you. We're thick headed at times and are trying to unlearn years and years of our own rigid thinking. We look to you as what our children can become. You are our children's future inspirations; you are the trailblazers for equal rights. We're just wanting to fight along side you.

I have one piece of Autism Awareness jewelry, my mother-in-law bought it for me. I love it and Morgan loves it, as he does all of the interlocking puzzle pieces. Why? Because all my pieces fit together on it, nothing is missing, just as nothing is missing from my child. On the back, it is inscribed:

I wear this for my hero 

Monday, February 4, 2013

Just imagine

Editor's note: This is going to contain some swearing and is going to be lengthy, guaranteed. This is painful for me to write about and more than a bit of humility has to go into it. Please understand that ignorance, even when applied carefully, can mask anything. However, even when one is wearing a mask, one knows that mask is just what it is: a mask. Please also understand, I'm giving a very watered down version of events that have happened.

I beat myself up regularly. You see, my son, Morgan, wasn't diagnosed with autism until the summer of 2010. I've known my son to be autistic since 2007, at the very earliest remembrances. So, why the long wait? Lack of services? Please, don't be so quick to judge me. I write this only to get it out of my system and to put it forth as my own "come to Jesus" meeting... with myself and whomever is reading this.

Morgan was born a big baby- 10.5lbs. Looking back, I can see where, from the first, there were clear signs of autism. Morgan rocked as a baby. As in, the night we brought him home from the hospital, I was afraid to put him in the cute cradle because the damned thing was tippy and the child kept mysteriously flipping himself over. NOT KIDDING. I thought it was because of something I was doing. Maybe it was, but my son never stopped moving much, even while sleeping.

He never liked to sleep on his back (anti tummy people, LAY OFF). In fact, by the time Morgan was two months old, he'd completely rolled over and refused to sleep on anything but his tummy. Again, I thought I was doing something wrong.

Morgan began sleeping through the night at three or five months, except for a feeding. "Great, I thought, I can sleep!" Except I really didn't. I remember feeling puzzled as to why my baby woke up in the morning and would lie in his crib and just stare at things- for minutes or hours, if I let him.

When Morgan was seven months old, he was crawling everywhere. Except he still enjoyed being on all four and rocking back and forth.

When he was walking at nine months, he took a screw driver and disassembled every single interior door knob in our condo. Yeah, good times!

We thought we had a genius. We thought our baby was Einstein. He was doing things early. Things like crawling, walking, puzzles, those shape sorters (though I ignored that he had a hard time with getting the cubes into the actual shapes)... then, hand, foot, and mouth disease struck us. More to the point, a 105* fever struck Morgan.

It was right before his second birthday. The fever stayed above 104.5* for too long. Hospitals were too far away in either direction to matter. I did what I knew to do- Motrin, Tylenol, and a room temp bath. The temp dropped lower, but not low enough. Morgan's temp never went below 104 for 30 agonizing minutes. Finally, it lowered itself to 103*. And my son slept. At the pediatrician's the next morning, it was back down toward normal. It was the last time I'd be in a doctor's office in SC and think "normal" ever again with my son.

You see, we had Morgan in a private day care. A wonderful place! I dropped him off one day, about three months after the fever. I'd noticed his words seemed to have slowed down, but he'd picked up a new one, a curse word. I warned them and they asked "Morgan can speak?!" That feeling I'd had in my gut started to blow up. He'd gone there for nearly six months by then and they'd never heard him say more than "bye." I went home and cried.

About this time I noticed that the tantrums that are supposed to be common at that age were explosive. Noises really freaked him out. He'd gone from calling me "Mommy" to "Ma...Ma."  My husband and I estimated that he'd gone from a 60 word vocabulary to 4. Four words. "Mama," "dada," "car," and "kiki" for cat.

That Christmas, we were at my mom's in Florida and Morgan was screaming over going to bed. He'd been just... bad... all day. I was past a breaking point. I remember sitting on the couch and looking at my mom and my bonus dad and saying, "I don't know if it's me or him! It's like he's a bad seed! I'm doing what I know to do and nothing right is coming from it!" I was lost.

So began what we knew of autism, though we couldn't get a diagnosis, but still, we knew.  We got our son into speech therapy. The speech therapist... God, I loved her and hated her. She said everything I knew I should be hearing and everything I didn't want to hear. I was selfish, okay? I wanted my "perfect" child, even though I couldn't see him standing right there in front of me. Morgan and I did a lot of crying in those days. Him more than me, obviously. Family and friends thought, if we just spanked our kid, he would behave. If we spanked him, they thought, he wouldn't freak out over loud noises. Or paper ripping. Or garage doors. Or trick-or-treating. Morgan kept playing with trains and cars. And flapping. And rocking.

In the meantime, we welcomed Bailey into the mix. I was scared. I didn't know about this autism thing. I didn't know if Bay could have it. I didn't want it in our lives because I was afraid of it.

The ST kept saying that Morgan lacked imaginative play. Hmmm, well, he lined up cars perfectly. Ah-ha! I thought, he was playing "traffic." He lack "modeling behavior," practiced "echolalia," and a host of catch phrases that in that past five years, I've grown uses to as autism related jargon.

However, it couldn't be autism because the state of SC wait-listed my son. For over 18 months. This is what private insurance looks like, folks. Before autism insurance reform, anyways. It takes a while for that sort of thing to be cemented.

In the meantime, I had friends help me out. Great friends! I didn't completely realize it, but they had me doing ABA on my own with Morgan. I took everything the ST was doing for 30 minutes a week, twice a month (it's all we qualified for) and replicated it at home 5 days a week, at least 6 hours a day. I figured out that flashcards could double as PECS, I made my own version of social stories. I read every single fucking thing about autism I could get my hands on. Sensory play. Sensory Aversion. Nonverbal Communication. GFCF diets (yeah, not happening again). PECS. Learning to bide our time. Learning to count down on a wait list that wasn't getting shorter. Watching our son be left out of kids playing on the playgrounds. Hearing him be called a "retard." I cried. I yelled at people. Morgan kept playing with trains and cars.

The miracle happened over time.. Morgan talked. I mean, he talked. Not just echolalia. But sentences. They were odd, most were scripted, but all were beautiful. But still, the meltdowns continued. But still, potty training took forever. But still, Morgan kept rolling trains and cars back and forth, back and forth. But still, family members and friends thought we just needed to discipline our child better. 

 But still, it wasn't autism.

We moved to Tennessee when Morgan was four and a half, too old for TEIS (Tennessee Early Intervention Services). We allowed time for him (and us) to settle and try to be "normal." What a laugh. That was when, we learned, that "normal" was just a setting on the dryer.

We sent Morgan to a Christian-based preK. First day, the teacher, now a friend of mine, told me sternly, "Your son wrote like THIS. THIS is the level I expect out of my students!"  Scared the hell out of me! I explained to her that, honestly, we'd been so focused on getting him to talk that we hadn't spent a lot of time on writing. We were sending him to preK for that. The next day, Morgan got in trouble for "sitting on, frightening, and LICKING" students. That would continue. Well, SHIT.

This continued, but Morgan eventually learned to write his name. His social skills? Well... he didn't lick so much? He did get an award for best manners. Echolalia RULES for learning manners!! Please understand, this is sarcasm.

But still, there was no play dates. Morgan didn't interactively play. He was content to play with cars and trains. Unless it was his brother, there was very little interaction with other children. I would sometimes see him look longingly, I thought, at the other kids playing that summer before kindergarten. I kept waiting for him to jump in. He never did. I even facilitated play between him and some kids quite a few times. The other kids were mean, I took my sons home and cried.

During this time, I brought up ASD to my pediatrician over and over. He kept telling me, "Jessi, ain't nothin' wrong with that boy! He's gonna play football! Look at how big he is!"  This was usually over my son screaming, "No doctor, no doctor, no doctor!" Or calling all medical staff doctors because, in his mind, if you worked in a medical office, you must be a doctor. That summer, it took me, five nurses, and a technician to hold Morgan down to have blood drawn. He was five.

Kindergarten would have been harder, I think, had it not been for Morgan's wonderful teacher, Mrs. V. She was, and is to this day, a teacher who has a genuine passion for her students. When we were called to the "horrible meeting" to discuss why my son didn't socialize, she sat next to us, not "them." When the county shrink got out of hand, Mrs. V was wise and ended the meeting for us. She made Morgan feel secure. She pointed out to me were Morgan's strengths were before she ever pointed out his weaknesses. She was always quick to say that she had to grade him based on state protocols. But she watched. She listened.

But still, Morgan played with trains and cars. But still, my pediatrician insisted nothing was "wrong."

I lost all patience that summer after kindergarten. I realized one day that a great majority of what my son was doing was scripted, by rote, by memory, whatever you want to call it. By writing this down, it makes it even more shameful to me. I failed my son.

The day after I and my husband finally, finally said "Screw the professionals, this IS autism!"  I made an appointment at Morgan's pediatrician. He finally said, that yes, I had made my point. But still, it could be something else. He ran tests for everything. Fragile X was the scarier and one of the most expensive ones. He referred us to a developmental pediatrician whose specialty, it seems, is to not let a single child out of his practice without a diagnosis- bad form, by the way. I already knew what Morgan's would be. He spent five minutes with my son after his nurse had spent two hours and gave us a diagnosis of high functioning to moderate functioning autism, possibly Aspergers. I clung to Aspergers like an idiot thinking, "this isn't real autism, right?"

Before a month was out, I was an "expert" on autism. I'd spent every waking moment that I could reading and reading more. I knew the IDEA act cold before our first meeting with the staff at Morgan's school. Morgan had his first IEP. He had services through the school. Finally, my son was going to learn coping skills and learning skills from someone other than me. Not that I'm complaining, but when you've been stressing yourself to the gills for years and have illnesses of your own, autism wears you down. A diagnosis is a relief, to an extent.

We were schooled in what it is to have private insurance deny you in a state without autism insurance reform- twice, really. You see, our insurance was able to deny us basic "rehabilitative services" for our son because we couldn't prove that any of the services weren't "restorative in nature at the onset of therapy." We were shocked. We thought that the hardest part had been gone through, the diagnosis. Instead, we were now fighting the insurance company AND the school on a weekly basis.

This brings me to today. If you're still reading, thank you. I know this was long. The reason I wrote this is to display the holes in some states systems. Autism insurance is important. Services are important. Had the full extent of Ryan's Law been ratified when we lived in SC, Morgan would have been diagnosed and services would have been obtained- when he was 4. Instead, Ryan's Law does not include self-funded insurers (my husband's company). We switched insurance companies when he transferred jobs to Tennessee of that year.

In Tennessee there aren't real autism insurance reform laws. There is the The Autism Equity Act of 2006. It states that children up to the age of 12, with an autism diagnosis, must be covered for speech and occupational therapy (OT). However, that's usually covered/offered in schools from what we could see, it's what we were told we could get- after our private insurance flat out denied us. OT and speech aren't the end all, be alls. Thousands of children are discriminated against every single day, just as my son was. Plus, there is a serious lack of providers (non quacks) in eastern Tennessee. This post would have been five times longer if I had railed against insurance companies. Just throwing this out there, but where there is no or little autism insurance, there is bound to be very few providers of autism related therapies. Like Occupational Therapy. Developmental psychiatrists. Or Applied Behavioral Analysis (ABA). Take your pick.

Many of you reading this either know me personally or are blogger friends of mine. Imagine going through what my family went through. Imagine not being able to obtain a diagnosis and then services for your child due to lack of knowledge in the medical community. Imagine it. Now, get mad. I still am. We moved across the south in order for our son to have a better life, with insurance. This month, he qualifies for state residency and his autism Medicaid waiver. My husband's work is not self-funded and is under 50 employees, so we're good.

Morgan will be able to gain coping skills that will, hopefully, enable him to live an independent life one day. One day, maybe I won't mentally flog myself for him not being diagnosed at age three instead of age six. One day, maybe he'll go to college. But today, I'm still mad and I still cry. Because it wasn't right.

Friday, February 1, 2013

My littlest boy, the ginger

Editor's note: I don't usually write about our other child, Bailey, because this is a place for me to talk about Morgan and our journey with him as we navigate Autism. However, this is also a place for me to talk about Autism and how it has impacted my family. I don't know if Bay would be any different if his older brother was neurotypical, but he'd still be a hell of a kid. Bailey has been part of the compass that helps direct his brother. *Oh,  there are a lot of photos in this post. I figured the kiddo deserves it.

Bailey, even during incubation, was a kicker and a (I imagine) silly boy. The kid kicked the crap out of me regularly while I was pregnant, it felt like he was dancing with roller skates on. I mean, it was painful. Maybe the pain was worse because the stress in our household was setting off Ritcher scales. Morgan was in his nonverbal stage and we were in the beginnings of trying to find a diagnosis. There was a lot of kicking and screaming in those days. A lot of kicking and screaming. 

Bailey was born on a very frigid day in 2008. He came into this world making a lot of noise and has never stopped. When his older brother first saw him, I don't think that Morgan quite knew what to do with him. However, despite the confusion, there was love born that day. Morgan, for as much as I felt that he was pulling away from me and retreating into himself at times, looked at his baby brother and smiled. But, not at first.

As the weeks grew into months, Morgan, I believe, really learned to love his brother. There was no "baby envy" that is common of children that age (three when his brother was born). Maybe it was Autism. Maybe Morgan instinctively knew that this would be one of the first people to not judge him, to just love him.  Morgan's instincts were correct. That little ginger haired, blue eyed boy was born, I think, worshiping at the altar of Morgan. Serious hero complex, people.

 Bailey was one of the first children to ever really play with Morgan and vice versa. Before his brother came along, Morgan had had only two friends, fleetingly. He had no real interest in interactive play. But with his brother, well, they interacted. Bailey gave his older brother zero choice in the matter. Sometimes, quite oddly, if you didn't know what you were observing.

"normal" interaction
Seemingly "odd" interaction - this was tickling, no Bay's harmed!

Bailey, as are all children, is an individual. However, he is an individual who loves to imitate his mommy, his daddy, and his hero, Morgan. All of this started young...
Imitating Mommy

Trying to catch up
If Morgan is who gives us our cue on how to be better humans and parents, Bailey is who trains us in hilarity, hi-jinx, and what we should never say in the presence of children. Because he'll repeat it. He's funny. Oh, God, he's funny. His giggle, I used to say, is the purest thing I've ever heard. When he laughs, he laughs. From the earliest point on, he has always been cracking us up with antics just as hard as he's been making me want to tear my hair out. Like a couple of weeks ago when he said, loudly, "that lady looks like the HULK!" This was complete with arm gestures... in the middle of his ENT's office. We received from very dirty looks.  But it was still funny. *I did make him apologize... to which he said, "I'm very sorry, but Hulk looking people scare the bejesus out of me." Yeah, he's a handful.

Bay is a charmer with those big blue eyes and messy red hair. He squishes his nose and though it looks evil, it's still cute. Even when he's mad, he's adorable. It helps keep him from getting shipped to China.

Bailey is always up for a good time. Whether it's creating something like an art project, or an Angry Birds set, going to the park, or taking a road trip, the kid's always game.

Now, mischief the kid has in spades. We have back talk, we have pranks, we have run of the mill things that are normal for any five year old. However, he tried to cut the dog's hair a couple of weeks ago. When he and his brother dumped an entire box of Cheerios on the floor a long time ago, Bailey happily sat down, crunched them up and made an even bigger mess. His older brother was whooping in the background with the sweeper vac, trying to clean it up so that they wouldn't get into trouble. 

Bailey schemes and dreams. I love that. I love that he's so incredibly full of life that he causes me to shake my head in wonderment. Granted, those same schemes make me post statuses on Facebook that my friends apparently find hilarious. But hey, at least my frustration at raising a high spirited child serves as entertainment value.

The all time best thing my youngest son does, though, the thing that makes my heart swell with pride? He loves that big brother of his to the moon and back. He learned the days of the week because they have "sleepovers" with each other on Friday and Saturday and he counts down until then on the other days. Though he gets frustrated because Morgan really only likes to play with trains, THOSE are what he picks out for Morgan's birthdays and Christmases.

We're open and honest about Morgan being an Autist. He'll seek out SN kids to play with, especially if he notes that no one else is playing with them because his brother has taught him that kids are all just, well, kids. Morgan taught him right from wrong in a way that I couldn't have- he's led by example and by life experience. I don't think Bailey ever wants a child to hurt as badly as his brother has been, including himself- but that's another blog post. Bailey isn't always accepting of Autism because of the walls it can put in between him and Morgan, but he is of his brother. As much as a five year old can be. Boy, don't even let that child hear the "r" word, he'll school you on how bad it is. He can also probably give you a run-down on stims, tics, and the DSM's definition of autism.

He gets very upset sometimes because Morgan needs sensory breaks and cannot play with him. He doesn't always understand why his brother has to spend so much time doing those two or three pages of homework when it only takes the other kids a few minutes. But when the homework is done, when the sensory breaks are over, I know to back off and let those boys be boys together. To giggle hilariously as they sniff each other's armpits, build train sets, watch movies, and just.. be kids.

Another thing that Bay has done since Morgan was probably in kindergarten is take up for his big brother. We've had to pull him away from kids that he knows have bullied his brother just so Bay doesn't get in trouble or get his butt whipped, trying to whip theirs. I have to admit... I don't condone violence at all, but this fiery child of mine is willing to stick his neck out for his brother, that's kind of admirable. He's been doing it since he was three. Bailey has told kids, "If you can't be nice to Morgan, you can't be my friend." I think he sees the two of them as a package deal.

I'm so very thankful that I was blessed with two very individual boys who love each other so much.

Bailey's love for his brother is amazing. "You're the bestest big brother in the whole world!" is often heard in our home. Of course, so is "Mom, Morgan licked me!"
These boys are my <3