Thursday, October 9, 2014

Bittersweet Words

Baby L said my name this past weekend. "Mom mom mom mom." It was unmistakable. For months he's insisted on calling both of his parents "Dad," which may have been a baby protest of normative gender roles or something. But this weekend, he finally said "Mom."

His language--both verbal and non-verbal, both receptive and expressive--is blossoming, and it is exciting to watch this miracle unfold. He points to what he wants and sometimes pairs it with words (to go outside, for instance, he points to the back door and says "side"). He's also mastered saying when he wants more of something or when he's done. Without prompting, he signs "more" when he wants more, and when he's done, he puts his hands in the air and says "dah, dah, dah" for "done." And every time he communicates with me, I get choked up. It's so amazing, so amazing.

Yet the beauty can be bittersweet. The other night, Beh was taking a shower, and I stepped in the room to see how he was doing.

"Do you want more shower, or are you all done?" I asked as L pulled himself up to the side of the tub, interested as always in what his brother was doing.

Beh had a perplexed look on his face, like he knew I was asking something and wanted a response from him, but he had no clue how to give me what I sought.

"Do you want more shower," I said as I signed more, "or are you all done," I said, again with the sign paired with my words.

Beh was still completely lost.

"Do you want shower on or shower off?" I thought different words might help him find his voice. I said it again.

"Shower off," said Beh. I really didn't know if he said it to communicate, or if he was just echoing me, but I took it as communication.

I leaned down to move L's hands from the edge of the tub so that Beh could open the shower door. L, this tiny boy who loves his big brother so much that he wants to always be with him and do whatever he is doing, gave me a bit of a fight. He didn't want to move even one inch away from Beh. As I gently moved him, I looked at him, and my heart broke a little bit. Here was this fourteen-month old who could do something that his nine-year-old brother has to fight--HARD--to do every day. Concepts like "more" and "done" are simultaneously so simple that a baby can master them and so challenging that a fourth grader has to give all the fight he has to grasp them. My heart hurt for Beh, that he had to fight so hard to grasp something so many of us take for granted.

I turned the water off and Beh giggled as he burrowed himself into his towel. L bounced up and down, squealing in glee at the sound of his brother's laugh. I looked at them again, and this time, instead of feeling the bittersweetness of L being able to express things that Beh can't, I felt hope. L doesn't look at Beh and see autism; he doesn't look at him and see limitations. He sees someone he wants to be just like. There's an ineffable beauty in such unconditional love. It is a love dependent in no way on words; it is a love that I know will follow Beh through his lifetime. When he can't find the words, his little brother will be there to help him find his voice. L sharing the language he's building be a voice for Nick . . . I can't imagine a more beautiful gift a brother could give.

Tuesday, August 5, 2014

Summer Time Blues

I loaded and ran my dishwasher yesterday morning. It was awesome!

You make think that's sarcasm--it's so not. Being able to run my dishwasher without someone having an OCD meltdown is nothing short of miraculous. And it would not have been possible without the arrival of the back to school fairy.

Let's jump back in time to winter. Beh was doing well, exceptionally well, in every area of his life. His language was blossoming, his academics were thriving, and his behaviors were nearly non-existent. In our nine years of wrestling with the challenges of autism, this moment in Beh's life was the best of them all. Sure, he was still autistic, but the beauty of his autism took center stage rather than the challenges. Every afternoon when I took his daily sheet out of his backpack and read about his school day, I was overcome with pride. My kid was doing so well! And knowing how hard he had worked to get to that place made it all the more sweet.

Then the rain came down.

It's one of those things as a mother you kick yourself for. If I'd only know how this would have affected my child, I would have done it all differently. But the thing is, you don't know; there's no way to know. But you kick yourself nonetheless.

My mother-in-law was diagnosed with breast cancer. There wasn't a doubt or a moment's hesitation in my mind--she needed to move here, move in with us, so that she could get the best treatment possible.

It was sure to be a big transition for Beh, but he was doing so incredibly well that I was certain he'd do incredibly well with this change.

Then she arrived. Her second night here, she asked if she could invite a couple of people over for dinner. Sure, no problem. Beh had been doing so well that he'd do well with this, too.

Early on, he felt his space encroached upon, so he took one guest by the hand and led him to the door, his way of saying “please leave my house.” I let him know that our guests were staying, and he was fine; he used other coping strategies. At dinner time, having three extra people at the table, crowding his space, was too much for him, so again he did something that made me proud—he took his plate to the counter and stood there to eat. Great coping strategy. Then my mother-in-law violated his space again, coming over to him when he’d clearly made an effort to get away from everyone. Beh hadn't started on his carrots yet (he usually eats his foods one item at a time), and for some reason my mother-in-law thought it was her job to interrupt his chicken eating to try to get him to eat his carrots. That's when the worst thing happened--she touched his food. You don't do that to Beh; he thinks you're taking it.

He’d done so well utilizing all his strategies, but this was too much—and he pinched her arm.

And she slapped him.

That one slap started a downward spiral that Beh couldn't stop. Everything in his world unraveled. He lost his words, his school performance dramatically declined, and his behaviors increased. It was worsened by my mother-in-law every day violating his routines and messing with the fans he felt the need to control. He became extremely obsessive-compulsive.

A study recently published in the journal Autism found that people with HFA/Asperger's feel anxious about 50% of the time while people with neurotypical brains feel anxious only about 7% of the time. I would imagine that for Beh, whose autism is much more severe than someone classified as HFA, the anxiety percentage is even greater. So throw all of this stuff on someone who is already anxious, and it's no wonder that he becomes more aggressive. Any of us would if we were choked by anxiety and had no words to communicate that to someone else.

Then summer arrived. Beh doesn't qualified for extended school year (something that still boggles my mind), and without the predictable structure of school, the fabric holding together his little world unravels more. All of his medical data and behavioral records show the same thing--summers suck for Beh. Anxiety increases, behaviors increase.

It was a perfect storm. Not only did my mother-in-law's presence and the loss of a school routine upend Beh, but he also lost his only habilitator and respite provider in early July.

What that meant was me and three kids, locked in the house all day. Beh's aggressions had increased so much that there was no way I could chance taking the boys anywhere. Even the short ride to drop N. off at his screenwriting class in June had agitated Beh. He was so freaked out by it, even though he didn't even have to get out of the car, that he would pull my hair, as hard as he could, from the backseat. So when July came and we lost the only person who could watch Beh while I got out of the house for a few minutes, we stayed in the house. All day. Every day. I was the target for Beh's frustrations--whenever something went wrong in his little world, he sought me out and dug his fingernails into my arms as hard as he could. Having someone you love hurt you all the time . . . there aren't words. The house began to feel like a prison, but I didn't know what else we could do.

I felt like I was starting to drown. Things that I would normally be able to cope with more effectively became the cliche back-breaking straw. When my mother-in-law said that if we were only able to beat Beh without the authorities going after us, he wouldn't act out any more, I lost it. It was punch a grandma with cancer or have a mini-meltdown, so I opted for the latter. LOL, but I only had the luxury of sitting in my closet alone for five minutes to have that breakdown because, you know, kids. I figured it would be good to start seeing a therapist because a meltdown wouldn't fit into my schedule, but the irony was that even though I found someone nearby, I could never actually go see her because, you know, kids.

Why on Earth do I share all this? A friend on Facebook inspired me a couple of weeks ago. As autism moms, we tend to focus so much on the victories. My son ate a green bean! My daughter spoke a full sentence! And the positives are good; they are what keep us afloat in the rough sea of autism. Quite frankly, though, there's a lot of shit in that sea. Researchers find that the stress an autism mom experiences is similar to that of a combat soldier. We don't like to talk about it because we want to focus on our children's successes, but it is there nonetheless. And I think it's about time we acknowledge it along with the victories.

Speaking of those victories, I got to run my dishwasher. The three lights on the front of my new dishwasher have been too much for Beh's OCD to handle. He wants all three lights on all the time, but when the cycle is running, there is only one light on at a time, indicating which stage the cycle is at. Simply turning on the dishwasher prompts an aggressive meltdown, one that doesn't end until he can open the dishwasher and stop the cycle. I've resorted to washing my dishes in the middle of the night.

But I did dishes. At 8 o'clock in the morning. We've got some work to do to help Beh through his anxiety and OCD, and we have a new medicine plan and the routine of school to help with that. While we wait for all those pieces to fall back together for him, I have this dishwashing-gem to carry me. Might seem like a crazy thing to be excited about, but right now it's the greatest thing ever.  

Tuesday, July 29, 2014

Neurotypical Kids Are Weird: One Year of Little L.

(I was going to post this two weeks ago, in honor of L's first birthday, but getting a turn on my laptop when I've got a house full of boys on summer vacation is nearly impossible, lol.)

I was prepared for everything possible with this baby . . . except maybe neurotypicality.

I don't think there was ever as much critical thinking that went into having a baby as there was with L. His brothers are on the autism spectrum, of course, so when my husband first mentioned the idea of having a kiddo, I had to think about a lot of things.

First there was a lot of information gathering. My doctor sent me to a specialist who ran me through a full battery of test and history collection. In the end, she said there was only about a 1% chance that we'd have a child with autism. That was pretty good odds. Not that I'd have a problem loving another child with autism--it's just that resources have their limits, and therapy schedules for three children would be much harder to juggle.

But we weren't in the clear, though. She wasn't concerned about autism, but she was concerned about other things, like Down Syndrome, because of my "advanced maternal age" (that was a fun term following me along on my medical charts throughout the pregnancy). They did more test, though, and I apparently had "the eggs of a teenager," according to the doctor. Sweet.

I felt like we were clearing every hurdle and that there was just one more ahead. If the baby was a girl, I felt like we'd be home free. Autism risks are much higher in boys; in my mind, I thought that if we had a girl she'd be safer from the struggles her brothers had encountered.

I cried a little when the sonogram tech said "It's a boy!" I didn't cry because I was disappointed--I love little boys and honestly would not know what to do with a little girl--but it was because I was scared for him. I wanted this baby I had yet to meet to be as safe as possible from everything. And here was one thing I had less control to protect him from.

Within half an hour that fear turned to resolve--if baby had autism, we were the perfect family for him to be born into. He'd have autism pros for parents and have so much love. Game on--let's do this.

Finally he was here, a little boy who looked ever so much like his daddy. And, well, I watched for every sign.

I know the developmental milestones; it's like they are tattooed to the surface of my brain because my life has been about trying to get Beh to reach them. And Baby L was reaching them, all on his own.

He made eye contact.

He started smiling a social smile.

He recognized himself in the mirror.

He started waving and saying something sounding like "hi."

He threw a ball.

I was overcome with the miracle of all these things. The years of trying to get Beh to make eye contact. The years of sitting on the bathroom counter, trying to get Beh to see the child in the mirror and recognize him as himself. The eight years of trying to teach him to say "hi" and "goodbye."

With every little milestone I was choked up with tears. I wanted to shout it to the world: "My baby smiled! My baby waved!"

People were like, "Yeah, that's nice," as if it were some normal thing.

You don't get it. HOW COULD YOU THINK THIS WAS A NORMAL THING? THIS IS A MIRACLE!! We're talking Jesus walking on water miracle, here. Everything L does is a MIRACLE.

I'm so thankful that I didn't have a neurotypical child first, that autism is my normal, because there's no way that I would be able to identify the miraculous, be able to treasure it, if I thought miracles were the status quo.

Of course, along with the miracles are challenges. I know that this is going to sound strange, but parenting a neurotypical baby is so much harder than parenting a baby with autism.

I remember having this moment in Beh's nursery, all those years ago, when I thought that God didn't think that much of me. A friend of mine had endured so many challenges--two children with a variety of health concerns requiring surgery, a husband who passed away. Something that came up in conversations we had was this idea that God only gives you what you could handle, and that God must've thought she was an amazing woman of great strength because he entrusted her to carry so much.

I stood there next to Beh's crib, struck by how different my experience was. God gave me the perfect baby. He didn't fuss. When he woke up in the morning, he sat up in his crib entertaining himself, never crying out for a parent. When I put him to bed at night, he never cried for a parent to stay. He was such an easy baby. I must not have been worthy of carrying much because I had no load to carry at all.


Another autism mom and I were talking about this the other day. Like me, she had a child with autism before having a neurotypical child. And we both agreed that parenting a neurotypical toddler was so. much. harder.

Beh didn't cry because he didn't have that craving for social interaction. He entertained himself because he didn't really have much need for others. Had I known then what I know now, I would have seen that as a giant red autism flag.

But neurotypical babies . . . wow. Never has caring for a baby been so much work. L wants constant interaction and entertainment. He wants to be an active part of the world, not an observer of it. I'm exhausted, LOL. It's weird and lovely and exciting and beautiful.

Saturday, July 5, 2014

The One Where Mom Starts Crying in the Middle of an Eval

Today Beh had the evaluation for his augmentative communication device. It's been a long, long painful wait to get to this point. So many stops and starts, even this week when his original appointment got rescheduled (I gave my appointment to another mom who had been waiting over a year and was going to have to wait yet another month for an appointment because her family was going out of town).

The eval team was a speech therapist and an occupational therapist. And they, wow, they knew their stuff. I don't just mean technology. They knew autism, they knew Beh--even though they'd just met him, they had an uncanny ability to read him and interpret his behaviors.

The speech therapist pulled out the first device to try and said one simple sentence about how Beh could push this button on this screen to communicate. I don't really know what the exact sentence was, but it made me start crying. Right there on my table, in tangible form, was the gateway we'd been searching for for so long. And her one sentence made it sound so simple. Beh just needed to push X and, BOOM, communication. My baby could have a voice, after nine years of searching for it. All of it, in the reach of our grasp, finally. The hope, the relief, the love were too much for my heart to contain and poured out in tears. LOL, it was embarrassing. I choked out an apology, saying that it was just that we'd hoped for this for so long. "Don't apologize," the OT said, "This is what we're here for."

I composed myself, and we got to work. We went through several devices, all of which were tablet-based. The challenge was finding one that didn't lead to too much stimming due to Beh's hyperlexia. We had to actually hide a few buttons because he was stimming so much (he especially liked hitting "the" and the pluralizing "s" button because it threw the software off--it would simply spell out T-H-E-S because it did not know how to pronounce the nonsense word).

We finally found a good fit for Beh's needs. It's the Accent 800 with Word Power software. It's about the size of an iPad mini. It's so cool. It relies on pictures paired with words because the words alone were too much to stim on for Beh. Here it is:

Accent 800

This baby is $5,995 of awesome. He'll be able to take it with him wherever he goes.

It will be awhile still before that happens, though. There's still a lot more waiting. First, the claim will be submitted to our primary insurance, and they have 60 days to deny the claim, approve the claim, or approve a portion of the claim. After that, the claim for any remainder the private insurance doesn't cover will be submitted to Medicaid, and they have 30 days to decide (which shouldn't be a problem since the state already approved the device). So we have up to 90 days of just waiting on the insurance.

If all goes well there, we enter the training phase. It is going to take a lot of time to teach Beh how to use the software to communicate. Everyone on Beh's team--therapists, behavior coaches, teachers, parents--will need to be trained on how to help Beh communicate with it.

But today I'm not thinking about all the work that is before us; today I'm just basking in thankfulness and peace because this leg of the race is over. No more fighting and wrangling to make this happen. All of that ugliness is done. We have hope and a promise for the future. We have an Accent 800 :)

Monday, June 2, 2014

He Listens Like Spring and Melts Down Like June, Hey Hey

It's the little things that you forget cause the most trauma. But they do, especially when it's June.

June is historically Beh's roughest month. He loses all the comfort of routine that the school year provides and is cast into an abyss of uncertainty. On the days when he can just stay home with no demands upon him, he's fine. But toss anything at him that varies from the routines he lives by, and he's lost in a tornado of fear.

And it's the stupid little things that cause that fear, the things other mothers take for granted as simple tasks.

Today it was taking N to camp. It was his first day, and the respite provider scheduled to work with Beh was sick. I had to take all three boys.

I prepped N. the night before. We went over the campus map over and over again so that he'd know where to go because I knew getting Beh out of the car and walking him around an unfamiliar school would be too traumatic. I hated that I wouldn't be able to walk N to his classroom, but he is 13 now and can handle it.

I talked Beh through the morning. We were dropping N off, not him. We'd come right back to the house. We'd go back at 11.

Everything was fine until our car approached an unfamiliar school and Beh freaked out. I reminded him that we were dropping off his brother, not him, and that everything would be ok. But words have a hard time reaching someone who is overcome with fear. Beh screamed. He pulled on my hair from the back seat. He kicked. He was so afraid.

When we got home, it took 30 minutes to get him out of the car. I honestly don't know how I'm going to get him back into the car to pick up his brother. No clue.

Will you please do me a favor today? When you run an errand or make a quick stop at the grocery with your kids in tow, will you be thankful? Will you embrace the miracle that being able to so is? Will you lift up a prayer of thankfulness to your deity for the beauty of the mundane? Because, I promise, Beh would love to be able to do those things without being overwhelmed with a fear few of us can understand. Be thankful for those tiny miracles.

Thursday, May 15, 2014


I am not Adam Lanza's mother.

Over a year ago, something really terrible happened in Newtown. It launched our nation into an often vitriolic conversation about mental health, autism, and violence. The media tended to focus on the wrong things, like the fact the shooter may or may not have been diagnosed with an autism spectrum disorder. When, you know, autism does NOT cause violence; it does not lead to mass murder. Ugh, I'm still angry as I think back to some of the uninformed things I read in the news last year.

In the midst of all of this, a mother opined her $.02 on her blog. You know the one, you all read it--the "I am Adam Lanza's mother" manifesto by The Anarchist Soccer Mom.

Did she raise some important points about the broken mental healthcare system in the United States? YES. We need more people to call the system out so that we can begin to change the system and change lives.

But here's my issue, the issue that eventually led me to stop blogging--The Anarchist Soccer Mom didn't use a just pseudonym to identify herself. Right there on her own blog, next to a picture of her, is her full name, Liza Long. And she didn't out herself, and by extension, her son, on just her blog. She published the post under her own name on The Blue Review. And then, as her post gained viral traction, she went on the morning talk show circuit. I got to see into her life, in depth, on PBS--I saw her, the inside of her home, her neighborhood, her all.

Long made no attempt to keep herself anonymous, which means her son was never allowed to keep himself anonymous. Sure, she didn't use his name. But when a mother has her face a personal details all over the TV and the Internet, it's pretty easy to figure out who her son is, who the "monster" is that she has to hide the knives from (yep, she proudly showed off the container she hides the knives in on PBS).

Forget HIPAA; this child now has no chance of having his healthcare information kept private. Everyone in his community now knows of his mental health diagnoses. How many whispers and stares did he get because of his mother's actions? How many people turned their grocery carts the other way and went down a different aisle to avoid him in the local Safeway? How severely has this scarred an already fragile child?

People began forwarding Long's piece to me as it went viral, at least one person commenting that it reminded them of my experience with Beh.

Um, what?

I was stopped in my tracks. How on earth could someone see a parallel between my son, who doesn't have language to express his fears and sorrows so he at times turns to screaming and pinching to communicate them, and a child who deliberately threatens and attempts to murder people? Are you kidding me?

I know my friends are well-intentioned and shared the article in love. But I couldn't get passed the fact that this was how the world saw my son. Even worse, that I had a role in that perception. How often had I violated my child's privacy with my words?

So I stopped writing, completely.

In the time that has passed since that sad December, I've had a lot of time to think about all these things. The truth is, we need to be having conversations about autism, healthcare, mental health, and (dis)ability, and those conversations need to happen in the public sphere. There are so many ignorant misconceptions about neurodifferences, so many backwards medical and governmental policies, that we have to talk about these issues loudly enough for others to hear if we hope to make a change.

But we also need to protect our kids.

I hope to do both. I'm reminded of bell hooks and her discussion of the challenges of being publicly private, bringing the personal into the public sphere. In the end, she decides the challenges are worth it.

So I write. Carefully, cautiously. You never saw my full name on this blog, and you won't now. There will be no identifying pictures. You will not see my sons' names. They will just be N, Beh (the pseudonym his brother gave him nine years ago still fits), and L (yes, there is a third now--it's been awhile since I've blogged!).

And if I'm ever foolhardy enough to attempt to appropriate somebody else's experiences as my own--whether it is pretending I know the experiences of the now voiceless mother of Adam Lanza or my own children--I hope you'll call me on it.

Here's to continuing the conversation.

Friday, August 17, 2012

Day 60: Pearls before Swine

Nick injured the tendon in my right wrist with his bite. Three days later it still hurts when I touch it.

I had taken Nick to get measured for an orthotic. It’s common for children with autism to have physical difficulties to go along with the socio-psychological challenges they face. Nick is one of the 30% of people on the spectrum who have moderate to severe loss of muscle tone. For Nick, this is most evident in his trunk strength. His abdominal muscles are rather weak, which makes it hard for him to sit up for long periods. To compensate, he uses his posture to hold himself up. Instead of sitting on his bottom, Nick sits on his feet. He has hypermobility in his ankles, which means he can perform the super-human feat of having his feet flat on the floor with the rest of his body weight squatted above them. This way he can lean his torso on his knees rather than hold himself up, giving his tired core muscles a break.

This posture can cause a lot of problems. First, the weight of his body on his ankles has caused his heels to shift outward. If you look at your own feet and ankles, you’ll see your heel lines up directly with your ankle. Nick’s heels, however, are about an inch to the outside of his foot. Second, the posture has caused his shins to bow outward, making the bone more crescent-shaped than straight. Third, it has caused a curvature in his lower spine. He looks a bit like a stegosaurus with the knobby hump curving outward from his back.

The physical therapist wants Nick to get orthotics to straighten out his feet before he starts regular PT sessions. So off to the orthotic specialist we went.

Nick did so much better than he would have pre-risperidone. He flipped the light switches in the waiting room, but he was easily redirected. When we went into the exam room, he hid under the table, but he didn’t melt down. Progress.

Through coaxing and diversion I was able to get Nick through the physical exam. We even made it through the fitting. Almost. 

The mold of Nick’s left foot was perfect, but the mold of his right, not so much. She had to redo it. 

Scream, kick, bite, pinch, etc., etc., etc. I thought about posting pictures of the bruises I left the appointment with, but I'm tired of detailing my wounds. Let's just say there's a large patch of purple five-inches long and three inches wide on each arm. The cool part is that most of the damage is on the back side of my arms, so if I don't lift my arms up, you miss most of the freak show.  

That was enough to get me to finally do what I've been hesitant to do for the past couple of weeks--call Nick's doctor. She increased his dose of risperidone a tiny bit; we'll see if it helps.

But here's what I couldn't stop thinking about during the trip to the orthotic specialist, and I'm not sure if I should say it or how I should say it. It's just that there were all these pictures of products, from helmets to reshape infants' mal-developed skulls to titanium legs for children who had lost their own. There was my fearful autistic son, fighting in fear. There were then the thoughts of mothers I know, mothers whose children are on feeding tubes or have had open-heart surgery or have life-threatening asthma or are battling cancer or have lost the fight with an illness and are mourned. 

So many children, so many mothers face horrific, overwhelming, nearly insurmountable struggles. And it makes me angry when I hear mothers who have (thankfully) never had to endure such dark moments complain and feel overwhelmed by the healthy children they have been given. Getting my child to soccer practice is so difficult! My child has the stomach flu! My baby is teething! Back to school shopping is so hard! I have to sit in the pick-up line at the elementary school every day for an entire half hour! Oh my God! It's the most terrible thing I've ever encountered!

I struggle, really struggle, to bite my tongue when I hear mothers say such things. I want to grab them by the shoulders and shake them--HARD. I want to tell them that all they "endure" is really a delightful blessing of mundanity. I want to tell them they have a life full of blessedly pedestrian moments to be thankful for. I want to tell them that they are casting pearls before swine. How DARE they cast those pearls aside. I want to keep shaking them until they gather up every single pearl, clean them lovingly, and store them in the treasure box of their heart. 

Just, be thankful. Every time you are not sitting in an endocrinologist's/psychologist's/oncologist's/ nephrologist's/pulonologist's/any-other-ologist's office with your child, be thankful. Every time you are looking at your child smiling instead of suffering, be thankful. Every time the biggest argument in your house is about how much time your son gets to spend playing Nintendo, be thankful. Smile, even. Hell, throw a party--your child's fight is for video game time instead of for his life. Be. Thankful.

Because there are millions of mothers who would give all they have to live just one day with your "curses."