I am far too excited to wax eloquent here, so y’all are just going to get it straight up. We are making progress!
This morning, I noticed Luke tediously writing letters on a piece of paper. At first, I thought he was trying to copy the words off of something. He kept looking up while studiously repeating something under his breath. Then he would return to his paper and write. Back and forth, he went on and on. After about twenty minutes, he abruptly stopped, ran to the elliptical, and took off with uncanny ferver. After running for several minutes and working up a good sweat, he returned to his paper. I could hear him mumbling his numbers as he carefully printed a number beside each line. As he exed out the number and crossed off the first line, I finally understood what was happening. Luke made his own schedule. He put his own ideas into words on paper – completely independent of any help. Here it is at the point I finally caught on:
It may look like gibberish to you and me, but this is a huge breakthrough for Luke with the potential to change his life so much for the better! So, what does it say?
1. TMUL = treadmill.
This was the easiest to translate. I honestly am unsure about what other words he was writing, but we spent all morning working his schedule and crossing off each item as it was finished.
2. SPLR = Spiderman Puzzle.
This is a renewed interest this summer, and he is amazing at them. Today, he found a timer and told me, “Set the timer.”
And when I asked how long?
“10 minutes.”
3. SYWTPRU = Tape wheat fields.
When he got to this one, he read it to himself, following along carefully and ran to get yellow paper, which he carefully taped together to make his wheat field.
4. SgMRU = Shark Game. This is a game he also plays at therapy, and he matter-of-factly retrieved it, played three rounds – mostly by himself – then cleaned it up and crossed it off his schedule.
5. gTowbny = glue wheat field to bar.
Ok. Normally, I would not be so compliant with letting him glue stuff to my counters, but heck, it was written on the schedule, who am I to interfere? Unfortunately, the glue we found was super glue, so now I do have a fun removal job ahead, and he was distraught enough by the dried super glue on his finger tips that we had to postpone item six for a bath. But he didn’t forget. As soon as he was sufficiently degooed, he returned to the schedule and dutifully crossed out item 5. Leaving only:
6. 5STRU = Costume!
I love Luke’s new interest in dressing up! This summer, my boy discovered my box of old costumes and the outfits that boy pulls together are nothing short of stellar – it truly would be worthy of a post dedicated solely to his fashion statements. In fact, you can see part of his almost-standard wizard in the previous photos. This time, however, he went with the simple and understated minion.
Words fail to express how utterly over-the-moon excited I am about this! Today is proof that Luke has more potential than we know. He is capable learning to read and write. I know it is far from proficient, but it is beyond where I thought he was! It reaffirms there is more to Luke than meets the eye!
My heart is full of gratitude for the hours and hours of patient instruction his speech and occupational therapists and other teachers have provided to teach him to consider his ideas and try to put them to words on paper.
I snapped this after Luke finally calmed down following an intense meltdown at church. These experiences are obviously physically and emotionally exhausting.
It is a rare day when I venture out shopping or to any public event with Luke. It is something I really would like to be able to do with him, but stores and public places are high risk environments for meltdowns -public meltdowns that traumatize all of us.
We usually catch Luke’s meltdowns early enough to remove him from the environment before you would notice that my son is experiencing an autistic meltdown. However, he sometimes is triggered unexpectedly and rapidly moves from rumbling to rage. In these cases, he is probably down on the floor,kicking and screaming. He generally perseverates on a phrase – repeating the same thing over and over. He will try to break or tip over anything in his immediate area. If we can’t remove him from the area, we have to move stuff in his area to avoid damaging property and prevent injuries. To the casual onlooker, it probably resembles a massive temper tantrum that one might see from a toddler. The difference is that he truly cannot control himself; he loses his ability to reason.
Although the vast majority of people are very understanding and empathetic to our situation, I have had many experiences with people whose reactions to Luke’s meltdowns have been, shall we say, less than helpful. So, here are some suggestions of what not to do. All of these are based on real reactions I have seen while I manage public meltdowns with Luke:
PLEASE DON’T
Try to connect with me – While I truly appreciate your understanding heart, I really cannot sit and chat about your nephew who also has autism. I am on high alert trying to protect Luke, store property, and other people from getting hurt. It is impossible for me to engage in a discussion about the challenges your loved one also faces. I know your desire to connect with me comes from a good place, but right now is just not the time.
Offer me a tool to discipline my boy. This happens almost every time we experience a meltdown in public. I know this is usually done in jest, but it really is not that funny, and the message you are clearly communicating is that Luke’s behaviors are the result of my failure to discipline him. So, no, I don’t need your cane, your paddle, or your stick. I don’t even need your offers to, “Take that kid out to the shed,” for me. If these are your suggestions, please button your lips and just keep walking.
Play 20 Questions – I get it. It isn’t every day that you see an 11 year-old rolling around, screeching on the floor. I don’t mind if you need to ask why he is doing that, but please don’t keep peppering me with questions.
Coach me through the situation. Even if you are a professional behavior interventionist, unless you have experience with my son specifically, don’t tell me what I should be doing to manage Luke. In the entire 5 minutes you have had to observe and analyze my son’s behaviors, I doubt you have come to understand him and his motivations better than I do.
Get between me and my son. Seriously. He isn’t going to respond to the shushing and petting of a stranger, and he may go after you. He may break your glasses, scratch at your eyes, bite, kick, etc.
Offer him candy. While bribery can be a powerful tool in the arsenal of parenthood, this is not the time for it. Luke has a very keen emotional memory, and his meltdowns are very emotional for him. I do not want him to associate this negative emotional experience with a high value reward like candy.
Gather to watch. This seems like social propriety 101, but we don’t need an audience. Believe me, I am already humiliated by the scene we are creating. Please, don’t make it worse by forming a crowd. If you must watch, could you do so somewhere out of sight?
Share your passive-aggressive comments. I get it. We have destroyed your peaceful shopping experience. I am deeply sorry already, I don’t need to overhear your comments about, “this generation of entitled children,” (who manipulate their parents like this) as you pass by intentionally within earshot.
Public meltdowns are such a challenging part of our autism journey. I have discovered they bring out the best and the worst in the general public. While I have highlighted a few of the less positive reactions here, some of the most beautiful examples of caring have happened amid these harrowing experiences. (See my post, “Folks Who Get It.”) A simple word of encouragement can help ease the tension. One understanding mom simply whispered, “Keep fighting the fight. You’re doing fine.” Such simple reassurance is all it took to bolster my spirit to endure the public eye of scrutiny.
Late one Wednesday night, one of these characters saved me from certain doom – Death by GIGGLES! Who was it?
On a rather idyllic Wednesday evening, our family had just finished evening scripture study and family prayer when Hubby told Little A that it was time for bed.
“I am pretty tired,” she responded sweetly and yawning. She picked up her stuffed animal and trudged toward her bedroom, but the six-pack of easter eggs she had colored with Grandma earlier caught her attention as she passed by. She immediately put on her very best puppy-dog eyes and approached the parent most vulnerable to this particular attack – Mom.
“Can we please have just one little Easter Egg hunt? Oh; pleeeease?”
“Ok, but then it’s bedtime.”
She fluttered off with the prized eggs carefully tucked under her arm.
Seconds later, a wail of despair erupted from the office. One precious egg had rolled from its hiding perch and cracked.
On any other evening, the ensuing tantrum would have become legendary. Her wails quickly moved from pitiable to pathetic to completely obnoxious. When she refused to be consoled, I quite unceremoniously sent her to bed with her older sister to ensure she stayed put.
While Big A wrestled with weeping Little A, I hunted for the remaining eggs, but only found three of them and gave up.
A few minutes later –
“EEEW! I found one of the eggs, Mom! Gizmo just barfed it up!”
Sure enough. There it was – completely intact with only a couple of cracked spots from the pressure of swallowing it whole. Even the tiny, white stickers Little A had so carefully adhered as decoration were still attached – now caked in slimy dog goo. We carefully rehid the almost-perfect-barfed-up treasure – deep in the garbage can – knowing that Little A
would come unglued if she realized she had lost yet another precious egg.
With the egg crisis temporarily resolved,
I went to bed – only to be awakened a few minutes later by eruptions of mad giggling as Luke blew into the room. He grabbed my arm and tugged me to his room.
Desperate for sleep, I decided to play along and plunked myself down on the floor next to him, lightly scratching his bare back in a drowsy attempt to calm him back to sleep. And yet, hours later, my little joker was still unsettled. Every time I dozed for even a moment, his maniacal laughter would jolt me back to consciousness, and I would dutifully resume my assigned post as back scratcher.
Around 2am, Luke decided he was done with his evening back rub. It was time for a midnight snack. He plowed headlong into the kitchen, giggles still erupting freely, and made himself a plate of chips with cheese. I sat on the couch – half asleep & half listening for him. He finished his snack and dragged me back to his room where I promptly collapsed. He shut the door and turned off the light. Finally – sleep!
Or NOT.
As I played dead,
Luke’s giggles continued to overflow. It was like he was reliving some hilarious joke and kept replaying the punchline – over and over and over. He just could not stop laughing. After another hour or so of this, I am DESPERATE for sleep and decide it is time to give him some more sleeping meds.
I dragged myself up, stumbled toward the door, stubbed my toe on the bed frame, flipped on the light, and reached for the doorknob. It was LOCKED! (**Important note – the doorknob is turned around backward so we can lock him in when he is just completely out of control.) Usually, when this happens, I can just use my fingernail to twist it open, but they are all too short to get into that little slit and twist it open. UUURGH!
At this point,
Luke is just busting a gut watching me fiddle with the doorknob and I realize that I AM THE PUNCHLINE TO HIS JOKE! I am SO, SO TIRED, I just cannot even think straight. I am digging through the blankets on the floor, looking under the bed, trying desperately to find some tool – a hairpin, a paperclip, anything – to me get out of this room and to those magical meds that might SHUT THIS KID UP!
Nothing.
Now,
I am so desperate, I completely lose it and start banging on the door to wake someone up.
“JOHN! JOHN!! WAKE UP; SOMEBODY WAKE UP!!!!”
Luke thinks this is even more hilarious, and I don’t even care at this point. I am pounding and pounding.
Nothing.
So I start yelling into the air vents. I am right above my teenage son’s room. Surely he will hear me. “WAKE UP!! SOMEBODY WAKE UP! LET ME OUT!”
Nothing.
Hubby is always complaing that he can hear us walking around above him when we are up, so I start jumping up and down like a wild monkey, screaming, ” WAKE UP, WAKE UP, WAAAAAAAKE UP! LET ME OUT!!”
Nothing.
Now,
I am in tears and just…. so…. desperate. Luke is utterly maniacal and simply cannot contain the belly laughter. He is literally rolling on the ground laughing uncontrollably.
Then, I hear it . . .
“Mom? Mom? Where are you, Mom?”
Oh; Hallelujah! I finally woke T up.
“I’M LOCKED IN LUKE’S ROOM! LET ME OUT!
LET ME OUT!!”
T finally released me and I am just a sobbing mess. I fall out of the room and hug him.
“I was afraid I would never wake anyone up! Thank you! Thank you!”
“You didn’t wak me up, Mom. I just got up to tell you that Gizmo puked on my bed.”
Ugh…………..
At least I am free. I trudge downstairs to clean that mess up, but God bless that stupid dog, he had it all cleaned up already by the time we got down there. I sent the dog outside – just in case it didn’t stay down – again.
At this point, I started to wonder what was up with the rest of the family. Why had they not woke up with all that racket? I got a sick feeling in the pit of my stomach and went to check on D, the teenage son directly under Luke’s room. His door was locked, and I about cried at the prospect of having to open another locked door. I banged on it a few times, but then found something to pick it. His TV was blaring; his body was lifeless on the bed. I started screaming at him and slapping his feet, convinced that the whole family must be dead from carbon monoxide poisoning that was making Luke crazy too.
Finally, he sleepily sat up, and I came unglued on him.
“SHUT THAT STUPID TV OFF! I’ve been screaming at you for hours!”
He stood up and shut off the TV.
It is about 4 am now. I went back upstairs to get Luke his meds, praying to catch a couple zzz’s before I have to get up for work. When I get into the living room, I hear Luke in the bathroom. He is sitting on the toilet, banging on the wall and screaming, “JOHN! JOHN! WAKE UP!” then bursting into laughter, reliving the funny scene in vivid detail, mocking the desperate inflections of my voice.
He finishes his business on the toilet and decides he needs a bath (as usual whenever business is #2). I give him his sleeping meds while he fills the tub then collapse on the couch to rest a little as he takes his bath. Pretty soon, he is jumping up and down in the bathtub screaming, “JOHN, JOHN!” Clearly, he enjoyed my monkey dance too.
I didn’t even move to stop him. Just sat there praying for his meds to kick in and put an end to my misery.
I glance up at a noise from the office and see John standing in the doorway. The monkey dance in the bathtub finally woke him.
He stood there in bewilderment staring at the messy lump of tears on the couch. “What’s wrong? What’s going on?”
“Just listen to him! CAN’T YOU TELL?!” Luke was still in the tub, doing my monkey dance, copying my desperate call for help, and laughing uncontrollably.
In the end, we finally slept an hour or so before going to work. And the next day? Teenage son had no memory of the night’s antics at all.
Gizmo was the real hero of the night for swallowing another egg whole, puking it up, waking T to save me and then cleaning up his own mess. My HERO!
April is National Autism Awareness Month – a month which is designed to make the general public more aware of the prevalence of autism and the challenges associated with an autism diagnosis. At this point, I think you are probably in the minority if your life has not been touched by autism to some degree. Autism awareness is at an all-time high, and it shows in the small acts of kindness we receive almost daily. Today, rather than demanding that you be more aware of autism, I would like to let you know that I am aware of your autism awareness.
You demonstrated that awareness when:
You offered Luke a friendly, “Hello!” with a fist bump, even after your last interaction ended with a kick in the shins.
You only said, “I understand,” after Luke flattened your beautiful little baby girl when she toddled within a leg’s reach of Luke. You shook off my profuse apologies and focused on comforting her rather than berating me and my boy.
You came and sat by Luke in church while my husband was home with other sick kids. Just the presence of another adult in his space made all the difference in his willingness to sit through church.
You drew a picture for Luke – a picture of a smiling boy labeled, “To: Luke From: Your Friend, XXXX” Nothing brings more joy to this momma’s heart than to know that Luke has friends at school. You chose to brighten his day with a picture, and in the process, you brightened mine too.
You stepped in front of Luke as he sprinted away from me during our visit to the local thrift shop. His headlong run for the toy section was not going to end well. Not only did you stop him from escaping me, you carried my purchases to the front of the store for me, put a hand on Luke’s shoulder to anchor him while I checked out, and then helped us to our van.
At a time when the world is demanding that you understand more, give more, and do more for autism, I wanted to let you know that you are more – more understanding, more sympathetic, and more kind. You are autism awareness in action.
I have eight siblings – six of them brothers. This means I grew up fighting. Not knock-down, drag-out, beat-your-guts-up kind of fighting (ok we had a few of those too), but slamming, arguing, I-hate-your-living-guts kind of fighting. Whenever we were on the losing end of such a battle and desperation set in, we needed to communicate that the offending sibling was, “the pus that infects the mucous…that cruds up the fungus…. that feeds on the pond scum.” Lacking the eloquence of Michael O’Neill in My Best Friend’s Wedding, we had a word for that – Retarded. It was the low point of any argument, and generally a signal that any substantive debate was now thrown out the window.
Last week I had a conversation with a man I have been working with for over a year in an effort to help Luke. He is the parent of a grown child who has special needs, although I do not know the nature of her special needs. Over the course of our discussion, I asked about a business she had become involved in. The response I received from him jarred me to the core and made me question everything about doing business with him. He called into question his daughter’s ability to provide the service she was offering through the business, and then went on to say, “Let’s face it, she is a retard.”
“She is a retard.”
Now, let’s just leave that hanging there for a minute while I explain. I am not one of those overly-sensitive, politically-correct people who gets involved in debates over whether Luke is called, “autistic,” or, “a boy with autism.” (And, yes, for those of you outside the autism community, this is a very real debate.) As a general rule, I think our society often makes too much of missteps in verbiage, and many of us take offense where no offense was intended. Honestly, I think a lot of society today just lacks the education to know how to refer to different groups of people without causing offense – myself often included.
Indeed, most of the times I have heard this particular term used, it is by immature children or teens. It is not a nice word no matter how it is used, but I can usually chalk these instances up to pure ignorance or mean-spirited fighting – like my own use of it during sibling wars. Generally, it is used by typical kids who need to be taught about the damage their words can inflict. I am not sure how the parent of any child – let alone one with special needs – could possibly be ignorant of the incredibly derogatory connotation associated with calling another human being a retard.
I was so shocked by the flippant reference, that I simply did not react. We finished the conversation, and I just let it sit there to consider over time. Generally, when things like this happen, I mull over the comment and come to realize that it’s not such a big deal, that the offending party was ignorant or that I simply misunderstood. Not this time. The more I sit with it, the more repulsed I am. I know he was trying to make a point that was salient to our conversation, but it was so callously uttered, with such complete disregard of his daughter, that it replays negatively no matter how I try to reframe its context. If this man would say this of his own child, what must he think or say of Luke? I can only imagine the words he has used to describe my boy.
In the nine years since we realized Luke was not just a typical boy, I have used many words to describe his behaviors. He has been challenging, frustrating, and aggravating. Sometimes he has been mean and violent. He has even been down right annoying, but NEVER a retard. Luke is not that. This man’s daughter is not that, and no person should be labeled as such for a condition which is beyond their control. If we cannot speak with understanding, at least let us speak with compassion.
In my other life, I am a dental hygienist. You know – my other life – the life where I have intelligent conversations and move about my environment as I choose; the life where my work is appreciated and rewarded and my ideas are valued and considered – well, most of them anyway – there is that flossing idea I keep throwing out. . . . Anyway, the point is I exist as a relatively, “Normal,” human being in my other life.
So in this alternative existence as an intelligent being, I have landed the grand prize of jobs – an office that I genuinely love working in. I love everything about it; it is close to home; it has the up-to-date equipment and tools that make work easier; and the staff is upbeat and friendly. It is where I go for fun in this twisted, backward life of being an autism mom.
An autism mom – is that who I am? It has certainly become my primary identity. Inevitably, when people ask about me, Luke is where the discussion lands. This has become a challenge as I meet a lot of new people in my work. A lot of people who really do not want or need to know about the challenges of raising a child who starts out every morning with a new, creative way to drive me insane (just finished cleaning the carpet after this morning’s redezvous with a bottle of dish soap), but again and again, I find myself oversharing my life. Last week, my dentist innocently asked how my evening had been. “It was basically Hell,” is what I wanted to say, but I held back and offered a tempered version. “Not great. I sat outside Luke’s bedroom door until 1:30 am while he had an epic meltdown.”
I know these honest responses are not really what people want to know when they ask how your night was. I know I should come up with an upbeat response that does not leave people sorry that they asked, but autism dominates my life. I live it and breathe it in some form all day every day. I escape it once or twice a week only to find myself talking about it throughout my work day. How do I express anything about myself or my life without defaulting to autism? It seems impossible to offer a genuine response otherwise. I suppose I could offer up a shallow, doing-fine answer that would better satisfy the social expectation of the question, but if you want to know the real me, you will also know about autism.
Am I Luke’s autism? It is certainly a major descriptor, but I am much more than autism. I am momma to six kiddos. I am more than just an autism mom, I am also just a mom. I love music; I sing and play the piano for fun. I “teach” piano lessons to one student who now plays better than I do.
I like creating things. In my pre-autism life, I was an avid scrapbooker. My oldest three kids have fun books to look at documenting their childhood years. Even Luke has pages of his infant years that are beautifully painful to look at now as they express all the hopes and dreams I had for my adorable baby boy. I like to learn new skills. At the time of Luke’s diagnosis, I was trying my hand at sewing. I even made myself a shirt that was wearable.
Luke’s diagnosis has forced me to change, but I have found new ways to satisfy my need to create. I crochet – a hobby developed largely in response to Luke’s autism because I could carry it with me and work on it as I waited for Luke during therapy. I am learning to draw – also an autism-driven hobby. Luke loves to find pictures on the internet for me to draw, and then he colors the picture. I can whip out a mean air mattress or vacuum, but my skills with the John Deere combine with a wheat header are still in the early stages of development. I certainly wouldn’t identify myself as an artist, but it is becoming a part of who I am.
Learning to be myself amid the constantly changing demands of autism is a battle – a battle that I just couldn’t fight for a long time. I have felt trapped by the limitations autism has put on me as my own person, and I am tired of it. I am ready to begin to find myself again.
Tonight, we spent the evening trying to teach Luke to swallow a pill. He is on a new medication that he must have to control his increasingly violent outbursts, but getting him to take it is wreaking havoc. Our challenge is Depakote – available in happy white sprinkles or syrupy pink liquid. Both options could be presented as downright festive if consumption was based on appearance alone. Since taste matters though, we have delved into the dark art of creative culinary deception. We have made Depakote mashed potatoes with cheese, Depakote burgers, and Depakote quesadills. For a lighter treat, we introduced (with short-lived success) toast with a side of Depakote raspberry jam. With its rejection came the epic treat: vanilla-Depakote ice cream with Hershey’s chocolate syrup – the perfect solution – for about 3 weeks.
Repeated rejection of sprinkles moved us to try that enticing pink syrup in a classic Depakote smoothie and Depakote-laced Gatorade and orange juice. Now he’s onto us hard core. He knows all our tricks, and he is not having any of it. In fact, now he distrusts us so completely he will not even taste the food I give to him. If he didn’t make it, he won’t eat it.
And so it seems we have reached an impasse. If he could just swallow the stupid capsule, our dogged game of cat and mouse could end. So tonight I laid out all the options before him and explained, “Luke, you have to take your medicine, but you can choose how to take it. Here is a yummy Depakote Sunday, a Depakote- Strawberry Gatorade, a syringe of straight up syrup, a pile of happy sprinkles, or a capsule. How do you want it?”
Well, that went over a lot better in my head than it did in real life. He completely freaked out and bolted in fear at the sight of the syringe.
OK. No to the syringe of pink syrup.
With that option gone, we brought him back for further negotiations. He tried the pink drink suspiciously. Nope. That ain’t happening either.
The sunday was up next and rejected just as quickly. Finally, he decided to try the pill.
I have been saving up empty capsules just for this occasion, and we began Pill Swallowing 101 – a course which will take many lessons to master. It quickly became evident that the pills are just too big as a starting point, so I cut up tiny pill-sized chunks of banana as a more reasonable starting point. He actually swallowed three or four of these without chewing them up first. Yay! It’s a baby step!
After about an hour of waffling on how to get at least a part of the medicine down him, we dumped some sprinkles in water and he swigged down the liquid. It was important that he not see the banana “pills” as an alternative to his medicine. It was not a beautiful, eloquent lesson, but I can see that he genuinely wants to learn and was trying.
So here’s to hope! It may be a bitter pill to swallow, but it’s better than a Derpakote Sunday. Huh, who knew?
