Tuesday, June 16, 2015

Today

**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.

Wednesday, November 19, 2014

Tips for the new autism parent

Hi, you're new here.

I see you at the schools, in waiting rooms, and the grocery store. You're overwhelmed, aren't you? I'm sure that your head is swirling from the act of parenting a child you might not understand, the advice you're being given, and the materials you've been pouring over. You probably feel isolated, misunderstood as a parent, and even angry that your child is autistic.

There are certain truths I've found to be useful while parenting my autistic child. These are my truths, but perhaps they'll help you.

Don't love your child despite autism,  love him for himself. Acceptance means loving someone wholly.

Don't get wrapped up in the labels, no matter how many your child has. This is so hard, especially when your child is young and the world of autism is so unpredictable (it's never really predictable). Here are the labels you want to concentrate on: capable, loved, and worth it. 

Feel every feeling, but don't let those feelings take over your life.  All of those things you're feeling? Perfectly valid, even the one nudging you to cry as much as you breathe. Autism can be scary because of the uncertainties, but know that this isn't the end of the world, not even close. Don't be bitter for the life you think you're missing, be in the moment of the life you have. 

If you don't have a sense of humor, get one. There are funny moments in every day, even the days when you want to curl into the fetal position and rock yourself more than your child is flapping or scripting. 

Celebrate all of your child's milestones, especially the ones you never knew existed. The first time he plays with another child unprompted. The first time he willingly puts on winter clothes. The first time he eats a not brand specific English muffin. These are all accomplishments. Feel glad for them. More is coming.

Find your tribe. Your tribe of people is out there, even if they're on Facebook or Twitter. These are the people you can tell most things to, laugh with about poop, and who will get it.

Buckle up- it's advocating time. Learn your child's rights and take no prisoners when it comes to defending them. Educate yourself as much as possible, take a breather, and then jump back in.

Keep calm and tell the people who refuse to understand your child, "bye.". This might mean you don't talk to family members or formerly close friends. You know what? If they cared about your child, they wouldn't be jack wagons.

There is a reason for every behavior your child displays and sometimes, that reason is because they're a child. "Behavior is communication," is something you're going to hear over and over. However, sometimes that behavior is simply due to your child's age.

Allow them to be kids. We get one childhood, that's it.

No one is the all knowing being of autism. There is no autism prophet. Consider that when receiving advice, even this advice.

Take care of yourself. Good mental health is key for raising any child, but when raising a child with extra needs, it's critical. Reach out to people, ask for help if you can, and take help if it's offered. Your child needs you to be healthy.


Above all else, remember that this moment isn't forever. Your perspective on autism and parenting will be different in another year. Love and enjoy your child.


Thursday, October 2, 2014

What It's Like

*Editor's note: The following was a conversation I was lucky to be privy to between my two sons, over the course of about twenty minutes. I've omitted several things for privacy, and cleaned up others, while trying to keep the language as close to the original conversation as possible. I received both sons' permissions before publishing this. 

"Morgan," Bay asked, "what's it like to be you?"

The question was asked as the boys finished dinner and I sat away from them, reading a book. I marked my place and quietly listened.

"Well," Morgan said, "it's confusing. You know I'm an autism kid. Noises are big. Clothes have to be soft. Smells are hard." He went back to eating, apparently satisfied with his answers.

"But, Morgan, what's it like? Why is it confusing to be you?"

Morgan took a deep breath, pondered this question some, and then said, haltingly, "People think I don't listen, but I do. Teacher always says, 'Pay attention, sweet boy!' but I am paying attention. It's hard. I pay attention to everything, all at the same time. I can't pay attention to just one thing... I can't always use my words."

"There are all of these sounds and thinks (thoughts) and I can't just pick one. Can you?"

I sat, stunned. Morgan's never talked to his father or I like this. He's never really been able or rather, we've never been able, to get him to talk to us like this.

"Morgan," his brother started, "why do you script? Why do you use Thomas so much and love him so much?"

"I just do. The stories are in my head, 'cause I'm a narrator. I love Thomas, he's my friend. He's a very useful, cheeky engine."

"But you know, other kids don't like him as much, right? I mean, aren't you worried about bullies? Why do you talk like that (meaning nasally quality/monotone and scripting)?"

"I don't care if they don't like him, Mama says he's mine to love. Mama and Daddy say bullies just don't get hugged enough. I told you- I talk like this 'cause Jesus made me this way. Now, stop being a bossy boiler or this conversation is over!" (note the script)

Me: "Morgan, is there anything that's really hard for you?"

"Yeah, people when they give me too many directions. That's hard." Having my own struggles with this, I agreed with him. "Going new places used to be bad, but sometimes it's fun now. But not too much. Rounding (numbers). Noise. Making people understand me."

"Haircuts used to be really hard, right?"

"Yep, but they're not so bad now. The hairs still feel like poking on my skin, and I'm scared my ears'll be chopped off." "Mama won't cut your ears off-" "But I feel the scissors coming in! My brain tells me my ears are in danger and I need to yell!"

Me: "What would you make people understand?"

"I need to chuff (when he makes train noises and moves his arms in a circular motion, bent at the elbows). Ya know, trees stim? I'm a good boy and really useful. Don't talk about me in front of me. Kids shouldn't make fun, the grown ups, either. It's mean. People should understand people." I started tearing up.

Bay: "What's easy for you? You're good at lots."

"Making breakfast (he makes English muffins with cream cheese every morning for himself). Thomas stories. Tying my shoes. Making train sets. Snuggling. Smiling. Laughing. Swimming. Remembering the way."

Bay: "What's your school like?"

"It's big like a cave. It full of noise and echoes. I don't like the gym. It's confusing and fussy. Everyone is very busy all of the time and, when you're not busy, they give you more work. It's all work, work, work. Mrs. C's room is great. That's where I go for sensory breaks. I have the bean bags, the stimmy toys, all of that. It's quiet in there, I can tell train stories. Have you heard of the (slips into a Scottish accent) twins, Donald and Douglas?"

Bay: "How come you don't have friends come over?"

"Because this is my home. I have school friends. They're at school."

"Don't you want to play with other kids at home? Other than me?"

"Sometimes. It's not important to me. I like you, Bay."

"Any other questions?"

"Do you like being autistic, Morgan?"

"Do you like being redheaded?"

"Um, I don't know how to not be redheaded."

"Well, Bailey, I'm an autism kid. I don't know how to not be one. I like being me, even the hard parts."


I like that Morgan covered the important stuff.


The boys, hanging out of a Tardis. 






Wednesday, September 17, 2014

Not Typical

When Morgan was first diagnosed with autism, my husband and I were in "fix it" mode. We meant that our end game was that Morgan would be indistinguishable from other children.

We wanted him to pass for typical. We wanted him to be happy at all costs, as long as those costs were within our scope of reasoning.

We were determined. 

I didn't care that the little voice in the back of my mind screamed this approach was wrong for us. Nope, it didn't matter. My son's voice and the atypical way he spoke? That needed to change. I completely neglected to remember that I should be thankful to be hearing words, finally. Those fidgeting and flapping fingers? Those needed to stop. All of the books said so. Typical kids don't do that.

Scores needed to climb higher. He needed to blend with the other children. He was miserable, so were we. The more I pushed for him to be less of an individual and part of a herd, the more behaviors we saw.

This didn't last long.

I (I say "I" because my husband traveled a lot in those days and I was the primary caretaker) wasted time and energy. I didn't see that this wonderful boy who had been in front of me the entire time was great, just the way he was. He needed support, not to be changed. The only changes that needed to be made were the parenting and teaching methods being applied to him. 

I don't remember when the epiphany occurred, but when it did, breathing became a bit easier. Morgan began to smile more. We, as a family, enjoyed life more. We understood each other better. There was no more suppression of autism, there was only expression of Morgan's truest self. Sometimes his truest self wasn't the happiest child or the nicest, but he's been himself and not some representation of what I wanted him to pass for. This begins with allowing him to stim and extends to indulging him in his love of Thomas the Tank Engine at the age of ten- we used to fight against those things. 

He is in what is considered middle school here and with it comes clubs, a dance or two, and some pressure to fit in. Morgan doesn't really feel that pressure, I think, but he misses having friends. A teacher, when I was chatting with her, offered up some suggestions that would, in a sense, eventually allow Morgan to "fit in and pass" as a typical child. I laughed. 

I told her that "being typical" isn't possible and therefore, isn't on our radar. I don't want my son to pass for something that he is not. Morgan is the most genuine person I know and I want him to stay that way for as long as possible. I don't believe that teaching him to mask his personality, his thinking, his mannerisms, or his truest self, is the best way to go about things. The teacher saw my points and agreed. 

I can't wash my son typical. I don't want to. I don't want to compare him to his typically developing peers and feel sad or long for something we've never had. I don't want to push him to be something that he's not. Instead, I would rather push him to be the best that he can be. 

The less I've pushed Morgan to "pass," the more I've allowed him to play with his autistic peers, typical peers who get him, and just "be," the happier he's been.

That's the end game for me, right now. Happy.

I understand why, out of ignorance, I wanted my son to assimilate and "become typical." I thought that, with enough hard work and diligence, he could figure out how to be typical and happy. My very literal brain was taught by society that my son would never be happy so long as he was autistic. That he could never be happy as an autistic. 

I'm so glad that I stopped listening to what I was told. Society is wrong. 

Being atypical is not easy.

Being autistic is not easy.

But you can be happy.

It just takes the right environment.