The sticky wicket of Autism. There are some moments I feel particularly lucky for autism. Those moments I watch slip away from my friends who’s babes with bountiful curls framing cherub faces ask for the straightening iron ……who have their gossamer wings clipped to keep their feet firmly planted on the ground….who no longer rub the wonder of dreams deeper into their eyes when they are sleepy….I would imagine it’s the bittersweet joy of having children…watching the transformation from innocent Angels to inhabitors of earth. I get to cavort with an angel for longer. I still get to hear a gasp followed by “look mommy…moon!”. I still get warm snuggly visits at 3AM. Bubbles are still magical. Raffi is still the only fully grown man who can sing wheels on the bus and get a rousing sing a long at our breakfast table. A2 can still do interpretive dance in the aisle at the synagogue during prayer while onlookers smile and nod as if it is part of the service. But it’s not for much longer….as those other children blossom from midlings to Ivy League applicants….A2 will likely still ask for The Muppets or try to squeeze himself onto a tricycle or squeal “go faster daddy!” as he coasts down a hill on a tandem bike….the promise of youth in the body of an adult where looks from strangers will fade from smiles when asked “what’s your name”. It’s not natural to pray you outlive your child….but we both agree as long as there are songs to be sung, dances to be danced and bubbles to blown we will move with him and try to always see the wonder of his world.
Sensory differences are a common symptom of autism. Often kids on the spectrum can become overwhelmed by these differences. A1 tells me that a public toilet flushing sounds like a bomb going off and for several years he avoided public restrooms. A2 flaps his arms and locks out his knees whenever he is filled with anxiety. Kind of his virtual rocking chair….or else he is just hoping to fly away from the dentist/barking dog/hand dryer. As autism-folk we try to build awareness by creating overwhelming scenarios to get NTs (neurotypicals–yes, we have a name for you) to sympathize the plight of the kid flicking his fingers in front of his face as a way to stop having his eyes taking a million pictures at once or the kid who is pacing because he can’t tell where his body is in space. But sometimes, I am fairly certain that some of those sensory integration differences are not experienced in a negative way and sometimes there are common things that just look, sound or feel like something not of this world. If I could only take an x-ray of A2s little mind and see what he could for 10 seconds. (Feel free to smile at this picture….)
O is for Obstinate
All kids can be defiant. All kids can be persistent. Most can be both at one time or another…..however the persistence of a person with Autism can sometimes be far outside typical willfulness of even the most obstinate of kiddos. Most of this stems from intense need for familiarity, order and sameness of routine. This rigidity is part of the diagnostic criteria of Autism Spectrum Disorders. Sometimes I have no idea what will trigger A2 into a 3 hour long battle of wills. What can be a 5 minute routine one day can take 2 hours the next even when he knows that routine ends in something he enjoys. A1…no matter how much punishment, berating or time outs he got, he would get right back up and do the same thing over again. One summer I decided to ‘put my foot down’ and send him to the time out step after every single infraction. No warnings. That should teach him! After about a week of this, there was a day that I had sent him 17 times all before my husband got home from work. And he went willingly. Every. Single. Time. Something was very wrong and thankfully I had a moment of clarity. I got a clear cup, drew some lines across it and found a bag of marbles. Every time I caught him doing the right thing, I would throw a marble in the cup with the caveat that he couldn’t point out to me how good he was being. Unless he hurt someone (which he never did), there was no more time out step. Every time we filled the cup to a line, he got to pick what we did next in our day. If we got to the top (by the end of the day), he could get a dessert after dinner.
Just. Like. That. Everything was different. He would listen the first time and look out of the corner of his eye to see if I was digging for a marble. He got double marbles if he initiated social interactions. Before long, we were engaged in pretend play in the basement.
I had someone close ask “Don’t you think it might not be autism? Don’t you think it is could be his personality?”.
“Well, ” I indulged “if everything we do serves a function, what function do you think his behavior served that week?” Without much hesitation, she drew her hand up as if she was grabbing something and said “To have a ‘gotcha’ moment!” I thought for a moment. “What 4 year-old would rather sit on a step over and over, day after day instead of playing just to get under his mother’s skin? Isn’t a week long enough to learn that without the behavior increasing?” A four-year-old. Clinically, that would be a much, much bigger issue than autism.
Before that, I used to joke about how even a dog can learn to salivate to the sound of a bell when paired with food over time, yet I could not get my child to understand how his behavior had anything to do with the consequence he would receive. It’s one of the most bewildering and frustrating parts of parenting because regular consequences do not work. Though A2 may connect consequence to behavior in the moment, the pathology outweighs all and it is likely that he may not learn from his behavior for the next time. A2’s Childhood Apraxia of Speech required us to do drill work with cards for sounds and words over and over. Did we create some of this rigidity with him because of this? Probably. Did I have any idea that would be possible then? No. But the trade off was that he learned to try to speak and can make some needs known so that people other than me and my husband understand. Was it worth it? As a parent with limited understanding and resources I would have to say “yes”, because he displayed rigidity before that. Even as I add to this blog post from the original version written two years ago, I realize how much I have learned to even question if this was possible. We have lots to continue to learn.
Halloween is right around the corner…here’s some of my top tips and tricks to make Halloween fun and to hand off to any of the indignant PTO moms who have forgotten that ALL kids want to have a good time…..
Though Halloween parties have turned into “Harvest Parties” at school, the anticipation and sentiment of Halloween is still timeless. As a parent I find myself still caught up in Halloween and creating spooky Pinterest fails and contemplating what candy I can pilfer from my child’s treat bag without him noticing. Some costumes are so realistically scary that I am not certain that my red meat consumption hasn’t finally caught up with me and am opening my door to the actual Grim Reaper himself. There is a revolving door of Elsas and Ninja Turtles who could just very likely just be the same child over and over again capitalizing on those homes who everyone knows passes out full sized candy bars.
A couple of years ago I was coordinating a party for my child’s 4th grade classroom. 20% of that classroom had food allergies. I gently reminded parents that the goal…
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One night as I was plugging in my son’s iPad, I noticed he got a text. Many parents lose sleep over whether or not to invade their preadolescent’s privacy by looking at personal messages, but not me. My child at 11 years old is completely illiterate and he had never gotten a text before. I glanced around as if nervously waiting to get busted for reading it, but the truth was my stomach was in butterflies out of joy and excitement.
Hi A2. This is Ryder
Are you in bed?????
If you aren’t what time do you go to bed???
Maybe I have been wrong! Maybe school has been helping him truly cultivate and explore friendships after all! Real ones! A2’s class picture was on the refrigerator and I ran to it to ask him which one was Ryder. I recognized several of the boys in his class but didn’t know anyone named Ryder. Unfortunately, my son has a severe language disorder called Childhood Apraxia of Speech in addition to Autism so I had no way of knowing for certain which one Ryder was because A2 enthusiastically would answer “yeh!” to every child I pointed to including the girls. Could he be a child from the resource room? I could not know that either because the school will not tell me the names of any of the children in that room due to “privacy”. The kids he spends the majority of the day with. The kids who also probably never get or send texts or receive invites to play. The kids, like A2 who can’t just ask each other and then come home and tell their moms.
My husband and I were feeling almost hypervigilant over where we would know this child from since the phone number’s area code was from a city we used to live in many years ago. A2’s real name is an unusual one, so clearly this is meant for him. How did he get A2’s number since A2 doesn’t even know it? Does this child comprehend that A2 can’t read? Could this be an adult? A teacher? A predator? My joy was quickly turning to irrationality as my husband texted back to give this Ryder person a piece of our mind!
As it turns out…..Ryder was trying to get in touch with A2. Just not MY A2. Ryder was in 6th grade and had just moved from the area code on the message to our area code and had met a new friend at his new school (not ours) that day, exchanged numbers and did what every 12 year old does when making new friends. A2 was contacted by a ghost. An illusion of a promise of the world to come.
The coincidence lacked the sparkle of serendipity and sent a gut punch that made the butterflies swirling in my tummy fly out of my mouth and away into the sky out of reach. One three lined text of 19 words, 57 characters, 6 question marks and 2 happy face emojis sent me into a 10 minute emotional tailspin ending in a disappointment. While my reaction may seem dramatic and my sweet boy was oblivious, man alive, I know he would have LOVED for that text to be his if he knew. You see, that would mean someone wanted to tell him that they got a new skin in Minecraft, or ask him if he wanted to ride bikes to the park or see if he’s allowed to see that Jason Bourne movie. It would mean that someone might be sneaking him a You Tube video he isn’t allowed to watch at home or asking him if he thought the new girl was cute. It would mean that someone was thinking of him right at that very moment. It would mean he had value to people other than me and his dad. It would mean he was growing up.
Before this whole parent thing came along and made me loopy with worry, I used to help families move their loved ones into nursing homes. One particular instance, I helped take inventory of a man’s belongings and I asked him to give me his wallet so I could start a resident account for him to keep his $10 bill safe. He refused and his wife asked to speak privately with me in the hall. “I know he has no need for money here, but is there any way you can make an exception to let him keep it with him?”. I’m certain I did not handle the situation with sensitivity or understanding because she replied, ” We were never wealthy people but he was proud of the fact he always put food on the table or could hand his sons money when they needed something. That money in his pocket makes him feel like a man. And that, child, is all he has left to feel like one.”. I let him keep the money and have contemplated since then what the last material thing I would hold on to would be and why. I just didn’t realize that it would come earlier in life and be a random text message that was not meant for my child.
These things. These little things that give us a perceived sense of value–that we anchor to other things and make them into something more. Ultimately, the text itself was probably meaningless to A2. He however does very much care about all those things that receiving a text implies. Having a way to communicate with the world makes you a part of it and having a rolling digital scroll of blue and white messages are like the receipt to prove it nowadays. My friend’s daughter left her phone at home while she was at overnight camp and powered up when she returned home to 1022 unread text messages. I never did ask if she read them all. I do know that A2 will never experience the betrayal that can come with adolescent friendships and are exacerbated by text messages. No girlfriend break up text. No secret texts between friends who are standing right there with him, exploiting his trust. No anxiety over the three dots or “read” receipt. No. None of that. While I am disappointed that Ryder misdialed and reached out to the wrong A2, just for a moment I thought about grounding A2 from his device because he knows he shouldn’t be texting so late.
Many years ago when A2 entered the public school system he came from a private school that had a peer program and an ABA focus. He is so influenced by his peers we thought maybe it would be a good time to bring him back to our school district while he was so young. It was no small decision and perhaps ultimately made under the haze of xanax. I waltzed into school on curriculum night, notebook in hand, mascara and lipstick reapplied. I waved and smiled at other parents I recognized from the neighborhood. We chatted about the end of summer homeowners association picnic and how nice the tennis court was looking now that they repainted it and we absolutely should get together for tapas sometime (how has that not even happened yet?!). The desks were so small and facing each other. Tidy containers of crayons divided by color, posters on every square inch of wall space, shelves that housed bin after bin of books. Mobiles hung from the ceiling. Not at all what his ABA classroom looked like…way too much to distract..but it was all good. He will learn to adapt to this no problem…the neighborhood kids are all here! Someone took the time to take all the crayons out of the boxes! I found A2’s desk and it had a paper name plate with cartoon pictures of pencils and school buses just like everyone else. There was an envelope on his desk with all the “getting to know your child” papers like everyone else. There was a tidy blue folder with the agenda for the evening waiting for us just like everyone else. Sure….my mother hips were hanging over both sides of the tiny chair and sure, the middle aged teacher greeted us and held her gaze with my husband much longer than she did with me…..but that’s what we do here in public school…normal, regular people stuff. Then the teacher started talking. And talking. And asking us to turn pages in our packets. And telling us what our kids can already do walking in the door on the first day and where we could expect them to be when they walk out on the last. And the road map to get there sure as hell was not the road map to get to Italy or even Holland for A2. Nope. Flyby right over Europe to the heart of Syria (which I hear is really, really nice this time of year….really nice. Hot. But it’s a dry heat.). I did not see the person who punched me in the stomach. I didn’t even know that a sucker punch was possible in a mainstream classroom. Before I could find out if a bitchslap was next, I gathered my things and walked out. That teacher never did follow up with me to find out why I left, or if I was ok or if my husband liked her new back-to-school-sleeveless-blouse. A2’s intervention specialist saw me in the hall and gently said “..come with me to the resource room where he is a rock star. I’ll show you around”. She meant well, but he could be a rock star at his other school. I decided right then that the only way I would ever cope in another curriculum night was if I could sit at one of those tiny desks with a Big Mac and a bottle of stoli while listening to other parents ask questions like,”what if my child is above the standard for reading?” or complaining at the lack of computers in a room he won’t actually get to be in. I might be able to get away with the Big Mac…but the vodka would probably be frowned upon at the administrative level.
Don’t misunderstand…my boy is perfect in most ways to me (sometimes he is a bit of an asshole…no one is 100%)…I don’t fit a mold and when I realized I was going to be a mom 13 years ago I had no expectations my kids would either. I embrace the weird and inappropriate and many days it takes all of my will to push my monkey brain back into it’s cage before it starts flinging poo. I’m ok with all that. What is hard is that the rest of the world generally is not. While he gets the desk and cubby just like everyone else, he doesn’t get to have sleep overs, or bathroom privacy or even a way to ask other kids if they will skype or text him later. Due to “confidentiality” the helpers assigned to him are not allowed to tell me the names of the kids he would probably want to ask anyway. He doesn’t get detention for talking out of turn or showing up to class late. He doesn’t trade carrots for cookies with the kids at lunch. The bins of books must still be read to him and doesn’t get excited when he hears about the release of the newest Harry Potter book. And curriculum night? Well…all those things are written in the blank spaces between the lines on the syllabus. The syllabus that is only visible to certain parents. Not just like everyone else. The tiny desk is like a mirage. Those things don’t happen because those are not the things that are important to the people who spend 7 hours a day with him. Goals are set to reflect the things A2 CAN’T do rather than what he can whereas the curriculum for the rest of his peers are focused on what they WILL do. And not just at 80% accuracy in 4 out of 5 observed opportunities. I spend my life cherishing the tiny accomplishments inching along unseen by the naked eye or letting hurtful comments roll of my back like water off goosefeather by people who meant no harm. I can sit through all of that, but it reminds me my child is lonely. And I won’t sit through that. So tonite, the very last curriculum night of elementary school for me ever….like a pro I went in, signed my name on the volunteer list, eyeballed the room of parents , took 2 tums to settle my stomach in anticipation of the Big Mac in my mom-bag and walked out.
The bottom line is I would rather have heartburn and a hangover than go to curriculum night. What would you rather do?
Here is a short list I had some friends help me compile. Thank you Dava, Kelly, Anne, Carmen, Jessica and Katie
Express my dog’s anal glands
Watch another episode of Caillou
Make out with Donald Trump
Fall asleep in an Uber
Run 5 miles in the summer without chafe guard
Receive a text from Anthony Weiner
Wear truck nuts as a fashion accessory
Get through a Monday without coffee
Drive across country with my kids with a dead iPad battery
See my dad in a man-thong
There are some days that my heart breaks selfishly a bit. Days like today. As A2 gets older there really are no play dates. While kids are generally kind, there are limits to their patience. It’s hard to figure out how to play with another kid who wants to stand at the bottom of the water slide flapping rather than going down. His peers are now preteens and the adults that are close by interpreting for him, ensuring safety and cueing socially reciprocal behavior are going to inhibit their own wing stretching. So today, as I sat entering in my second hour in direct sun making sure my guy didn’t keep going past the “do not pass” safety barrier at the waterslide, I couldn’t help but notice the world around us. I had nothing else to do but try to clear my mind of things that poke at my side and wake me breathless in the middle of the night that were now tugging at the straps of my mom-suit with sunburned shoulders. I see the young women in their bikinis, laughing and hanging off of tattooed boyfriends and remembered a time where wondering if my thighs were firm enough or if my mascara was running were my biggest concerns. And at the time they really did feel like big concerns. There are days….just like every other chubby middle aged mom…I just miss my youth. I watch other moms read their books and drink stealthy mojitos next to the pool as their kids run to them at rest time asking for $5 for a hot pretzel. The lifeguards are there to protect theirs while I stand knee deep in freezing water wondering what would happen if I tried to do the same. There are days….like every other mom of little ones…. I wish I could enjoy a day off near a pool where I didn’t feel like my purpose was to make certain my kid didn’t die. I see the moms with toddlers and infants on changing tables and laugh as I remember being in the same predicament with a wet, slippery cherub in a soaking wet swimmy full of poop and trying to carefully slide it down over a squirmy tushy not realizing the sides rip off for easy disposal. Today I am trying to find a dry floor free of clumpy toilet paper wads to change an 11-year-old in a soiled swimmy and keep my fingers crossed that this won’t be the last year I can squeeze him into a size large Huggies with Nemo on the back. There are days….like every mom of infants…I just wish we were out of the diaper stage.
Once I shook the delirium of the midday sun and made my own mojito at home I felt less like I was crawling toward a mirage in the desert only to be disappointed by more sand. I feel conflicted by my own selfishness. I know the bottom line is if he is still oblivious to his differences and is still filled with joy doing what he likes to do whether it suits me or not then we are still golden. And yet….I can feel like I have received a sucker punch to the gut when I watch pubescent girls walk quickly in cliques past him whispering and giggling. I don’t know if my child worries about the same things I do or if he has crushes on girls or if he sometimes grieves his differences. I hope not. That way I can keep my selfishness where it belongs…to myself.
But that’s the thing. Don’t ALL moms go through this? We have a sacred ground that feels like it is being broken if we say it out loud or admit to having a bad mom day. Special Needs bad mom days and Typical bad mom days have a different script but definitely the same plot. No. I will never worry about my kid having a psycho girlfriend. I will never worry about my child’s heartbreak of being brushed off and losing social status. I will never worry that I did not raise him with morals or respect for adults. I will never worry about whether or not weed will be his gateway drug to heroin. And those things are equally as important even though there are days I would rather worry about those things. Somehow it became not ok to admit to worry or heartbreak or disappointment for fear of being seen that we somehow don’t appreciate our children. I hesitate to share on these days that I must sit quietly for a little too long and think about things a little too much. I am weary of feeling somehow missing our old lives or having a twinge of disappointment over “what could have been” cannot possibly coexist with loving our children with all our souls or appreciating their uniqueness in all their flappy, pool water drinking ways. See…because you know what I miss too some days? My flat stomach with a belly ring that didn’t look like it was a way to deflate my abdomen. I miss not checking moles and worrying about sun cancer. I miss not having to hire a crane to hoist my chest up in a bathing suit. I miss drinking beer all afternoon in the sun and flirting. I miss working 40 hours a week and actually being bored in the evening when I couldn’t find someone to go to the coffeehouse and play scrabble or see some local guy playing acoustic somewhere. And I dare anyone reading this to NOT feel like they miss those things too sometimes and that they too would consider trading their situation in to go back for just one day…..and then realize there would be no way in hell. Because we will never be the same…and for that the world will never be the same and that is the backward legacy that our kids give to us….as we gave to our parents.
I often wonder what kind of mom I would be in an alternate universe….and feel very selfish on the sad days. But ultimately…..autism or not…..I really don’t think I’d feel different from any other mom.
Day 20 2016: T is for Teachers and Therapists
Day 20: T is for Teachers and Therapists
97. A2 has had a total of 97 teachers and therapists in his short 9 years. Some were hand- picked….some chosen by fate and luck of the draw. Some were published…lauded recognizable names….some were quiet presences of whom I cannot remember their names. Some have been with us for the majority of his life. Some have only jumped in for a blip of time in his almost 80,000 hours on this planet. Some were stellar….life alterers….some just showed up because they had to. Some interpreted my coolness or seeming indifference to them as being non-caring. Some recognized that I always had my child’s best interest in mind all the time and understood it was important for me not to be too attached for fear of losing perspective and not holding them accountable should his learning derail. All have had a permanent impact…
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Day 18 2016: R is for Relationships (originally posted 4/2015)
“Are you sure he has Autism? He’s so friendly…”. While there are more nuanced aspects now to the criteria, failure to develop peer relationships appropriate to developmental level is one of the defining and most obvious diagnostic identification for children with autism. Interest in people in general, desire for friendships and loving behavior can muddy the diagnostic waters and confuse people about what autism is and what autism isn’t. Disconnectedness, aloofness and lack of desire to be touched does not always translate as a lack of desire for relationships. The desire is there, the understanding for how that happens is not. It can just be easier to be by yourself. A1 can tell you that. Indiscriminate friendliness, hugs and kisses to those he loves and the compulsive desire to be around a lot of people doesn’t always coexist with developmentally appropriate social skills. A2 probably would tell you that part…if…
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G is for Genetics
I get asked often what I think caused my children’s Autism. I believe its completely counterproductive to even consider it until such a time that there is solid evidence. They are here now. I love them fiercely. Their struggles would be the same whether or not we knew the why part. Infection in mother during pregnancy, vaccine accidents, , overweight in mother during pregnancy, gestational diabetes, inadequate iodine, diagnostic ultrasounds, prenatal stress, advanced paternal age at time of conception, pesticides both before and after gestation…I’ve read those all. And they all have the same message: “Dad….Mom (but more likely Mom)…you did something…IT’S YOUR FAULT”. These theories are also part of what drives the Neurodiversity movement. That is, that individual differences and biological diversity are a normal and natural part of evolution and Autism is no different and is not something to be treated (a whole other can of worms within our community….). Regardless of your belief system…there is only one thing we know for absolutely certain: NO ONE KNOWS WHAT CAUSES AUTISM. To demonize parents who make decisions you would not necessarily make is also counterproductive. As parents we have an instinct to protect our children. When a parent watches the baby she knows slip away into a world of of silence or pain in front of her very eyes and no one can tell her why or really what to do..well….just take a moment to let that sink in regardless of your parenting/political/medical stance. I don’t have to agree…I just have to have empathy.
Here is what we do know. There is a genetic component to Autism. And it is likely paired with an environmental trigger. Just like Type 2 Diabetes. You can’t develop this unless you have the genes. And you make it far less likely to get it if you get your butt up off the couch, exercise regularly and do not eat like a regular American. We just are not 100% certain what that common genetic component is…or the environmental one in Autism. I am not going to even pretend to know anything about genetics…all I can tell you is to picture a city with 20,000 streets. Now lets figure out which streets have public mailboxes, one way traffic, standard poodles and single mothers living on them. Only some people who travel down those streets buy mandarin oranges (not regular naval) and we need to find those people. (But what about the naval orange buying people!? Those are a lot like mandarins!) That is what it is like trying to figure out the common genetic factor and environmental trigger together. When I had a discussion about this with a pediatrician 12 years ago she said to me: “Autism is caused by a genetic disorder. Period. To worry about anything else is ridiculous.”. I sat for a moment and thought about that. I then I wondered out loud “Hmmm. Ok. Can you tell me another genetic epidemic in history that unfolded like Autism?”. Crickets. I’m a pretty moderate parent…however it is no wonder that many parents are suspect of the medical system with that kind of definitive statement.
Does it mean my husband and I have autism? No, not necessarily…but who knows? If we do carry that genetic material and we combined it…. we no more caused the autism than we “caused” their big gorgeous brown eyes or fact that they may need to wear glasses one day…because their eyes could have just as easily been blue instead all things considered. And if genetics did play a role and all the fruity pebbles I ate during pregnancy kicked those genes into overdrive as the environmental trigger there is not a damn thing I can do about that now. I have never once felt the “shame of blame”…and I don’t think any parent should. We are wired to procreate and continue population. We can just hope that this kind of information will one day find the link that allows children who suffer in silence or physical or emotional pain to grow to be independent and happy…just like all parents want their kids to do.