Tuesday, November 24, 2015

How to Handle a Holiday Gathering

*I get that I've added political commentary which can be divisive. The whole point is to distract people from autism. Please take this all with the humor that was intended. 

It's the most wonderful time of the year! With that comes family gatherings where supposedly well meaning relatives say the most absurd shit ever.  I polled some autistics and parents/spouses of autistics to see what commonly gets said at the dinner table. Then, in my limited wisdom, I've created diversionary answers/rebuttal questions. They are conversation enders, if you will, and will succeed in taking the focus off of autism or your "lack of parenting skills." If you drink, please be sure to have libations readily available.

"Have you tried spanking him?" Inform your family member that you've tried every available method of discipline. And then, offer up this gem: "So, what do you think of the Syrian refugee situation?"

"Ya think he's gonna get normal at all?"Answer that autism is a life long neurological disorder, and there isn't a cure for it. Then, state, "I'm voting for Hillary. She's a class act."  *This also requires a bite of pie and a swallow or five of wine.

"God only gives us what we can handle." Take a healthy slug of wine and then, "Right now, we're all handling Donald Trump."

"He'll be fine, don't worry so much." Full glass of wine, straight into your mouth. Then, "You know who's going to be fine? The American public after we all convert to socialism."

"You are doing a complete disservice to him by labeling him!" Deep breath.. In, one, two, three... Out, one, two, three. Take a generous gulp of hard liquor, and then, "Just like we label white shooters as 'mentally ill?"

"Your son just licked me! Again!" "Ohhh, Aunt Mae, he's just testing your American patriotism." Congratulate yourself on having a rebuttal with a full glass of wine.

"You know, autism is just a fad. In a few years, everyone will be autistic." Drink. Then, "You know, Hilary 'was there' on 9/11." That'll stop all conversation.

"I feel so bad for you!" Two glasses of wine in quick succession should be funneled into your throat. Then say, "I feel really bad for Obama. He never gets any slack." 

"You/he/she can't be autistic. You aren't re******." "You're a real dick, you know that?" Sorry, I have nothing better than this.

"He'll eat when he's hungry." Grab the bottle nearest to you, drink, and then hit that person over the head with the aforementioned bottle. There is no rebuttal to this, only laughter and mild violence.

So, maybe these things won't help during the family gathering, but they will make things more interesting and possibly even divert your relatives from discussing what they think about autism for just a few seconds.

Happy Holidays!

Monday, November 9, 2015

What I want Special Education Teachers to Know

Dear sped teachers,

I've made contact with many of you as of today. With few exceptions (because there are always exceptions), you are wonderful at your job, or you strive very hard to be the best you know how. However, there are some things I want you to know.

"Grade level..."
What I love about the special education process, and IEPs, is that we have a one-of-a-kind chance to meet the child where they are, instead of where people feel they should be. Once we've established a baseline, we can work more on goals to achieve. For the most part, our experience with this has been good.

But I feel as if the special education system sets some children up for failure.

Too many teachers are forced to focus on "grade level" achievements. What if my child isn't supposed to be on this grade level? What if there really isn't a point in teaching volume, mass, and measurement right now?  What if I'm okay with my son reading Thomas the Tank instead of Harry Potter?

"On grade level" is something a majority of us veteran parents stopped caring about a long time ago.


You don't always have to tell us that our children are "secret geniuses." Genius is measured in ways my son is not. I fully believe that my son is smart, that all people are, but I understand that, on paper, it doesn't appear this way.

I fully grasp that, in an IEP meeting, you are attempting to deliver news that isn't settling. But give it to us straight. We don't need a bedtime story, we need facts. Perhaps I'm in the minority of parents here, but I don't want fluff and a hundred anecdotes about the "cute" things my son may do. I live with him, I know him, and I know how cute he can be.


Don't help my child so much that he cannot do something independently, like an art project. I can count on one hand how many projects have been sent home that I know my son did on his own and I treasure every single one of them. Those which were clear to me that he didn't do? They go in the trash and it hurts like hell to see someone didn't think my child's train scribbles were good enough. He's good enough.

Please tell the paras to back off. If a cutting exercise or something of that nature appears to be too hard, take a breath and let him do it.

The same goes for work. My son was "helped" so many times with so many things that, upon assessments or homework, he couldn't do these things on his own. Who is that really helping?

It is a disservice to any child to help to the point that it renders them unable. Physical disabilities notwithstanding, independence is what a majority of us are after.


Some of us really don't care if our child can perform quadratic equations. However, we really do care if they can count money, read a calendar, and balance a checkbook. If my child doesn't "qualify" for the life skills room and is forced to keep learning about why the Underground Railroad isn't really a train track (three years and running!), I'm going to need a better reason than "he's verbal." 

I understand your hands are tied in a lot of cases because of state regulations. But listen to the parents' concerns. Don't automatically say, "he'll get it... eventually." Some things aren't that important to us. We want our children to succeed, yes, but maybe our definitions of success are different than yours.

In closing, I want to reiterate something I've said time and again- I couldn't do this without you. A good special education teacher, or any teacher, is worth his/her weight in gold. We mourn the good ones we must move away from, and will remember you for always.

Friday, November 6, 2015

Anatomy of a Meltdown

*Below is an anecdotal account of what it's like to melt down. I have used information from autistic friends. However, I've tried to tell this in a first person narrative in order to keep my friends' privacy intact. Please note, I'm not speaking of aggression. 

I'm really terrible with managing my emotions. For me, feelings fall into two categories- forced apathy and everything else. When I melt, I melt big.

Sometimes, I know it's coming.

There is a tsunami of emotions racing through me, maybe for an hour, day, week or even month. I'll congratulate myself inwardly for not blowing up, for not crying. I try to appear as "normal" as possible, but that add to the wave I know is coming.

I start to notice that sounds sound louder, textures sharper, emotions are "bigger." I feel like I'm in a pressure cooker and it scares me.

A meltdown can be described as peddling a bike up a big, slippery, and steep hill. It feels like a heavy load is attached to the back and front of whatever I'm fighting. I push and push to get to the top, battling my emotions and flight or fight reflex, just barely feel the crest, and then, I start to speed out of control and I fly down.

I cannot stop, it's all systems go. My brakes no longer work and any coping mechanism I've developed is tossed to the wayside. I might get hurt on the way to the end, or hurt others, but I know it's coming and, to a degree, that makes me feel better.

I can't stop until I crash at the bottom of the hill.

Pieces of emotions are everywhere I turn. It feels better to finally explode than it does to keep it bottled up.

Sometimes, I don't remember my melts accurately. I do and say things without any impulse control. I throw things, say things which aren't true, and cry a lot. I shake, I have millions of racing thoughts. I get dizzy, even.

My melts can last for hours. I try my damnedest to stay out of other people's way, lest they get hurt by my words or flying objects. Most of the time, I'm avoiding my triggers left and right, top to bottom. I'm trying to not fall apart.

When fight or flight have kicked in, basic instinct often takes over. Autistics lash out at the people around us because, often, they're safe. We know, though not in the moment, that our safety net will hold us.

You have to understand that, when you're on the receiving end, there isn't much a person can do to reign in the overwhelming feelings they're feeling. If we've reached the implosion stage, it scares the hell out of us. Nine out ten times, things are going to happen that would never occur under optimal or sub par conditions. We've tried and failed to keep things in check.

So, what can you do to help an autistic during these times?

Allow the storm to rage until it's over. Bottling up what's remaining isn't going to help anyone.

Ensure that they (and you) are safe, if possible. Don't chase them unless they're bolting into traffic or at a real risk of hurting themselves, chasing only heightens the "flight" in fight or flight. Speak calmly, no matter how hard that may be. Sometimes, being held helps. Applying deep pressure also helps.

Allow them to stim, to yell, pace, and cry. Don't tell someone, "Suck it up" because we can't. If you know the person's triggers, try to keep those at bay.

The best thing anyone can say, for me, is "I love you. It's going to be okay."

If you're autistic, how do you manage your meltdowns? What can others do to understand and help?

Thursday, November 5, 2015

Autism, For Me

Autism for me is everything.

Autism intrinsically makes up every aspect of my daily life. I cannot separate autism from my being any more than I can change my eye color. I feel it down to my soul.

Autism means sensory assault in un/expected places. Beeping sounds, construction noise outside of my work, lights humming, and the pitch of people's voices.

I hold myself together until I cannot any longer.

Autism means that my fingers and hands dance along surfaces, teasing out the textures, finding solace in silk and shying away from slimy satin. It tells a tale through those hands. Autism tells people if I'm agitated, happy, or at peace.

Being autistic means that I feel as if everyone in the world who isn't me was handed a guidebook to life that isn't written in scribbles, hieroglyph, and all of their chapters are intact.

It means that if I watch someones face while talking, I miss the entire conversation. "Look me in the eyes if you're telling the truth," is a phrase which has terrified me from toddlerhood.

Autism means that I have decent intuition, but I rarely trust it. If my gut feeling is so different from how people are reacting to something, doesn't that mean I'm wrong? No, it does not.

Being autistic and not being diagnosed until later in life means that I've gone most of my life feeling like a foreigner in a non native land. Like I speak their language, but I don't comprehend 80% of it.

Being autistic is wonderful and awful, all at the same times. I have co-morbids along with my diagnosis that impair the hell out of me.

Autism means that I appear social until I cannot any longer. I get social hangovers from working retail. This means that I choose not to socialize on my days off, content to stay with my family and be quiet.

Being autistic means I'm shit with relationships. I'm loyal to a fault, but once someone violates my trust, I cut them off. I can compromise, but begrudgingly. I have a hard time relating to other people, and, in my experience, when the friendship ends, I'm usually stumped. Normally, it's something I said or did not say. As I've grown older, I've become okay with this. Either people like me for who I am, or they can back off.

Autism means that I can see the details before I see the big picture. It's all the little pieces before the comprehensive idea.

Being an undiagnosed autistic for most of my life meant that I became used to role playing, putting on masks of how I thought people wanted me to be. I still do that, because it's become such a coping mechanism and it works really well. People usually think I'm "social," at work, and incredibly type-A personality. They don't see or hear the inner dialogue I have running through my head at all times.

Autism means my brain never really shuts off. I'll wake up at 3am, intent on solving a problem that won't happen for years.

Autism is... me.


Tuesday, June 16, 2015


**Editor's note: I began writing this a week ago, when emotions were raw, as they still are. This may contain some language that offends and surprises long time readers of mine. While I apologize, I also ask for you to regard the use of this language in the context that it is used. I'm hurting. It's that simple. 

Today, I don't want to accept the hand my son has been dealt. I want to rage and scream, cry and cuss.  I want to demand answers to questions I haven't even formed, and probably never will.

Don't mistake me; this isn't about autism. I've made my peace with that and moved along. I've embraced it, even. I admit the hard and love the mediocre and the great. This other thing, it's different and it hurts.

Today, I'm admitting that I would change my son in a heartbeat.

I would change those scores and words that say "significant cognitive impairment." I would make life easier for him.

I would give him steadier footing on the playing field of life, because this is all so damned unfair. I would jerk away the regression that's stealing so many of his skills, much like I jerk up weeds in a garden.

I'm not sure that I'm supposed to admit here, or anywhere, that I would change my son, or that I'm mad, hurt, or wishing for a miracle of sorts. However, today, I don't care.

This feels different than when he was diagnosed with autism. We were better prepared, perhaps, better researched, definitely. I've known he had a "borderline" cognitive range since he was first evaluated. I expected that score to go up, somehow. But now? There on paper, it's states he's intellectually challenged. And it hurts.

God help the person who calls him "retarded."

Tomorrow, or the next day, I will research until my fingers cramp from the effort. I will find out exactly what it means for someone to be below the 1st percentile in something. I will be proactive. I will acknowledge that this new diagnosis makes sense.

But today, I'm sad. My boy is a great human being and none of that is reflected on a score sheet. I'm scared for him and worry for his future. He wants to work in a train store, which I think he'd excel at, but how would he run a cash register if he can't do simple math any more?

Today, I'm going to vow to live in the present as much as possible because the future is just too frightening.

Today, I'm going to cry, pick myself up, and then, move along.

Tuesday, May 19, 2015

Choosing A Path

**This raw post is written by my personal friend over at The Spectral Zone. He and his wife, along with their two gorgeous boys, have become friends of our family since our move to D.C. They are on a similar, yet different, path we were on so many years ago. 
Sometimes, as veteran parents who have been in the autism diagnosis game a while, it's easy to forget or diminish some of the raw emotions we once felt. I asked my friend to write on any topic he wished and this is what he chose. As a reminder, the views below do no necessarily reflect mine. 

It's really f*cking hard to admit that your kid is different.

Ask any parent what they want for their kid and, after "healthy," you will hear some variation of "I want her to fit in" or "I hope she has an easy path."

I'm still trying to accept that Flynn's path will probably not be easy.

Here in autismland, one of our biggest struggles. is how to get through to parents with kids who are struggling, but haven't yet been diagnosed with anything.  Parents who are concerned, but can't put their finger on why.  Parents who look at our kids and see, to their horror, their own kid reflected back.  

It's hard to watch your kid struggle.

I've watched my boy struggle with a lot of things, things I sometimes interpreted as failures.  Often, his struggles come despite my best efforts to support him. It never seems to get any easier to watch.  But before we knew his diagnosis, it was about a hundred times harder, because two key questions remained unanswered.  I didn't know why, and I didn't know how to help.  

I think that good parents often have a (somewhat flexible) vision in their mind of who their kids will be when they grow up.  And by that, I mean not what they grow up to "be" (fireman, doctor, lawyer, etc.), but rather which values they will demonstrate with their actions.  For example, you might attempt to instill through your parenting the expectation that your children demonstrate generosity, kindness, compassion, critical thinking, intelligence, independence, resilience in the face of failure, a sense of humor, etc.

Most parents, hopefully, will understand that success in instilling these values will be largely dependent on their child's personality, meaning they will fail to a greater or lesser degree.  And they also understand that a small child will only be able to demonstrate a few of these.
But even with that knowledge, it's hard to fail as badly as I have failed at instilling certain core values in your kid, without questioning your basic competence as a parent.  One particular example of my failures is the neurotypical version of generosity.  Sharing is hard for most kids at one point or another, but when Flynn was two and three. . . .  It just didn't happen. 

When he had a vision of who should touch his toys or how they should be played with, there was no changing it.  He just didn't share toys willingly, for the most part.  Even now, at nearly five, we're still working on strategies to make it more acceptable to him.

This struggle should have been one of our first indicators that we were on a different path from most parents.  There were others we should have spotted, perhaps, but Flynn was our first child.  You're never sure what to expect with a first child, so some of the other quirks were easy to write off (with the encouragement of his pediatrician) as variations on "typical" child development.  He pointed to a couple things and waved a few times, so he's got those milestones down, right?  Never mind that he did it and then stopped for a good year.  As in regressed.  "He's fine," she told us. 

So when he wouldn't share anything, ever, it seemed like he was just stubborn.  And kind of a jerk, if I'm being honest.  At two I made excuses for him, but by three I was getting frustrated.  That frustration made me highly conscious of other parents' judgements, made me more embarrassed, and more likely to be harsh with Flynn.  I can't even count the number of parties we had to leave during his third year because some other kid approached him and wanted to use "his" toy (which he had found 5 minutes before). It was mortifying.
All of this just made me feel like a complete failure as a parent, despite doing everything "right," according to the experts.

This is just one example, but the years before he was diagnosed were extremely challenging, as a result of our failure to understand his differences.  So what changed afterwards?  Well, we knew to expect social difficulties, for one.  Shortly after he was diagnosed, a friend said to me, "Wow, you've really gotten good at advocating for him." Things that would have been meltdowns were now chances for learning and teaching.
I finally understood the reasons for his behavior.  Being more of a hard-ass wasn't going to make him suddenly understand the point of sharing.  He needed patience and instruction.  In fact, if there's one thing that being an autism dad has definitively taught me, it's that the hard-ass impulse we all get sometimes is almost always wrong during the early childhood years.

I'm pretty sure that, eventually, Flynn will be a generous and kind adult.  But we're taking a different path to get there. A path with explicit social skills training, lots of rewards for behavior we like. It is a path which takes his reality into account.  No amount of yelling / forced sharing (which, in his mind is just theft) would have taught him anything but resentment. 

And you can extrapolate this to most other social skills, and a lot of other settings. For his first year at school, we heard all about his difficulties, but nothing answered the critical question: why?  Why was he aggressive with other kids, seemingly without provocation?  Why was he melting down during classroom transitions.  Why was he so eminently distractable?  Why, despite a year in daycare and a year in school, did he still respond to school drop-offs as though we would never return?

If your kid is having problems, you owe it to them to find out why.  Will you like the answer?  Maybe not. Their path may not be easy.  But a label changes nothing, and a diagnosis isn't a destiny.  But an accurate diagnosis tells you the cause for their behavior, and once you know that, you can start answering your real question:
What in the hell do I do with this kid?  How can I help him?

When you know, you can start preparing a path.  If it's not easy, well, at least it will be a path. 

Flynn, drinking a bottle of water while sitting on a rock. 

Thursday, March 19, 2015

My Unquiet Brain

I wrote much of the post below a couple of months ago, when I was at rock bottom and off of my medications due to a lack of insurance. I'm better now, much better. If you or someone you love has mental illness, please, for the love of all that's holy- get help and take your meds. Please. 

I have a mental illness. A couple, actually, with PTSD and anxiety being the bigger ones. Normally, I am in control of it. I take medication because I love myself and my family enough to know that's what's best for me. Mental illness is a really nasty bitch. It is an unwanted or sometimes unnoticed houseguest who takes up too much space in my head, appearing when I have things to do, a life to live, and kids to raise.

People have this preconceived notion of what it looks like, of how to be "crazy." I'm usually not that image- a 30something mother of two, well spoken, with some anxiety. People don't see me out of control. They can't read my thoughts, which dance across my brain like an out of control ticker tape. 

It makes me believe that there is kind of beauty to nearly losing myself. And maybe there is, but I haven't found it. Sometimes it's freeing to rant, scream, and rave, to speak in non sequiturs. But then, after, I see the faces of the people I've hurt and know that this time, I might have gone too far. I can't take any of that back. I can apologize, take my damn meds and swear that this "thing" won't ever happen again. 

But it will, because the only thing certain about being mentally ill is that it will continue to happen. You can't wish or positively think it away. It's not just about being sad, or being anxious. But it's also not like the movies.

When I'm in control of it, mental illness is a bother, but maybe not so much a big deal. Mania can be fun, to an extent. I once spent 24 hours straight, carving pumpkins into complicated designs. The kids loved them. My husband, I think, saw it for what it was and knew that no amount of sleep lost was worth that reaction from the boys. 

To acknowledge that all of it, held tightly in check with medications, is spiraling out of control is awful. Knowing that my babbling to my husband or mother has gone past the point where anything makes sense makes me feel insecure beyond belief, but I just can't stop. I speak in circles, stim like crazy, and pace until my legs burn. I stay awake for days, one thought tripping over into the next until I'm so mixed up, I have a hard time remembering what I'm supposed to be doing. 

Mania tricks me into thinking that being unmedicated is the best option. My senses and thoughts aren't dulled by by the chemicals and I believe myself to finally be healthy. That I've shed these layers of stuff. But I haven't. Those layers are still there, with crystal sharp clarity, though I cannot see them for what they are- thoughts which should be examined, impulses controlled, and tears unshed. That thinking is when I'm at my worst. 

It isn't just the mania or the anxiety which wreck havoc on my brain. It's like walking a tightrope over an abyss that you're afraid to venture into. The knowing that I am completely out of control, that this time might be the time I step too far over the edge, compounds itself into an ugly paste which spreads all over me. I get incredibly angry with myself, but I try to never let go enough to really cry.  Mental illness tells me that crying is weak.

Mental illness can be so wrong. 

I once lied to my therapist so convincingly, he proclaimed me "healthy." I lied so well, I believed him. I told Thomas that I was "good." I was just tired of talking. 

I wound up in that office a year later, begging to be fixed. And I was. And so, things were okay for a while. Well, as okay as they can be. I'd trip up and not take my meds and screw something up, or I'd take them late and make Thomas worry. But still, I was that image of control I needed, with a few exceptions. I happily involved myself with the kids' lives even more than I already was, I relaxed some, and I had fun with life.

But then, last fall, my husband lost his job. We lost our income, our insurance, and my idea of our stability. I lost my meds, my lifeline.

I was drowning and couldn't ask for the life raft. Oh, I thought I put on a pretty great front. I was wrong. I distanced myself from friends and family. I stopped wanting to talk to anyone, even my closest friends and sister. I was everywhere, all at once, in conversations. I paced like my life depended on it. I set alarms for everything on my phone, afraid I'd forget something. I had Thomas take the kids out, just so I could breathe. But I couldn't breathe. I could only pretend.

And I pretended really well. But pretending isn't living, it's only being able to survive.

I had the worst panic attack in recent memory on my birthday. Something stupid, something incredibly little, set me off so badly I screamed and ranted at Thomas in a voice I didn't recognize. I tried to walk away- I got out of the car in traffic. I got back in, later, and told him to take me home. I needed to be alone.

That day, I realized that I'd lost that tenuous grip I'd been keeping. I scared the hell out of myself.   Three weeks later, he got his new job. There was hope. There was a hell of an insurance package.

We moved across the south. I've been trying to get a grip on things since and I'm doing pretty well. Today, I was able to get back on the medications I desperately need in order to quiet my brain. Within an hour of taking my meds, my brain, normally so mired in crap, was quieter. I'm hopeful it stays that way.

Folks, being mentally ill doesn't always mean what the books tell us. I'm a reliable person, for the most part. I take excellent care of my children.  I love my family and want to be actively involved in their lives and my own, not just a spectator. And so, I take my damn meds.

Monday, March 16, 2015

Doing Enough

Sometimes, I look at the search strings which lead people to this blog. Usually, they are funny, though strange, and I get a good chuckle out of them ("burn all of the Thomas trains" is a favorite). However, today I saw the string, "I don't do enough for my autistic son." I felt pain reading that, a familiar pain which is usually throbbing dully inside of my heart and increasing my anxiety tenfold.

I think, as parents, a majority of us feel like we could be doing more to help our children. When one of our kids has specialized needs, though, that worry is probably amplified. We often turn to social media as a measuring point, whether we intend that or not. That's probably not the healthiest thing to do.

 I felt that a checklist, in no particular order, would be handy to tell if you're doing enough.

1. Is your kid happy?
2. Is your kid safe?
3. Is your kid in a nourishing and encouraging environment?
4. Does your child express, through vocalizations or movements, that they feel comfortable in their environment?
5. Are your child's immediate needs (clothing, food, shelter, and education) being met?
6. Is he or she being allowed to experience childhood, in their own way?

If you answered "yes" to these, then I would say that you are doing enough. Could you be doing more? Of course, but don't allow the drive to do more be a detriment to your child or you.

Don't look to your neighbor to compare. Your child is an individual with individual needs, and shouldn't be evaluated by what someone else is doing. I'm incredibly guilty of doing this, more so in the past than present.

Lately, I've been trying hard to let go of doubts about my care for Morgan and Bailey, who has his own special needs. I know when I do wrong, but I'm trying to focus on what I'm doing right. Morgan dictates, through his emotional well being and progress with new challenges or old, how he's doing, as does his brother. Letting go of preconceived notions is making me a better parent, or at least a far more relaxed parent.

Morgan's happy, for the most part. He's a prepubescent boy, though, so his emotions change like the Virginia weather. His needs are being met. He's getting an incredibly appropriate education, he's nourished, and he appears to be thriving. That's good enough, for now. Should new challenges present themselves, we will meet them head on.

But, some might ask, what about socialization and getting "on level?"

First, "on level" is a subjective term that means something different to everyone. Is your child lagging in subjects? Does he or she appear to need another therapy stacked on top of the ones he or she is already receiving? Does he or she vocalize or emote that he or she feels the need to be surrounded by people? Or feel the need to interact with others after school?

If the answer is "no," than let things be. It's hard to make friends in an environment that's focused on the "proper" way to play. It's hard to thrive when your entire life is scheduled. If your child could benefit from something like what is mentioned above, then go for it. But watch for signs of burn out. Too much therapy is just as detrimental to the well being of a child as not enough.

Finally, don't beat yourself up and cast so many doubts upon your parenting that you cannot see how well you're raising your autistic child. Also, don't take too much advice from the internet (yes, I see what I did there). None of the people in the peanut galleries know your child like you do. Don't allow someone whom you've never met to cast doubts upon your parenting. They aren't the person raising your child.

Allow your child to see you happy and confident while you're parenting. That helps, a lot. And, honestly? We're all making this stuff up as we go.