what is this sorcery?

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Wise words from my friend M.

The other day, I took Katie to Taco Bell for lunch. Don’t judge, people, every once in a while a girl needs a damn chalupa. Anyway, after the meal (clearly, I use the term “meal” loosely) she convinced me to try their new Cinnabon bites. By convinced me, I mean she said, “Hey, Mama, can I get a churro? And I said, “Sure, and let’s try these Cinnabon things too,” but let’s not get bogged down in the details. Anyway, they look like this …

Screen shot 2014-01-06 at 5.43.52 AM

Yes, that’s Cinnabon frosting INSIDE fried and sugared dough. In other words, eating this thing is kinda like biting into happiness. I wish I did not know that these existed.

Anyway, Katie took a bite, then looked at me with her eyes wide.

“What is this sorcery?” she asked.

We dissolved into laughter. Sorcery indeed.

I have a skin condition called psoriasis. I’ve had it for as long as I can remember. In August of 2012, I wrote the following about it …

My entire life, it’s been a source of embarrassment. When I was a kid, I would make up stories to explain. I’d pretend I’d fallen off my bike – skinned my knees and landed on my elbows. I’d say it was a ‘gymnastics thing’ – ya know, from the bars. I’d bandage my knees to hide them.

As I got older, it got worse. And it was no longer confined to my elbows and knees.

I’d wear long sleeves and jeans in the middle of the summer to hide my skin. I preferred to sweat than explain.

I used steroid creams for years. Then I stopped when I realized that my girls were constantly touching my skin. They didn’t really work anyway.

Three years ago, I found a treatment that did work. A super-charged and highly focused phototherapy. Sort of like a tanning booth on steroids. The sessions were a minute long, but the equipment only existed at one hospital. That one minute session took an hour out of my day. Eventually I had to stop going.

There are drugs. The side effects are not remotely acceptable – particularly when weighed against vanity.

Stress exacerbates it. It’s probably the worst it’s ever been.

Over the years, it has manifested itself in different ways. When I was pregnant, it seemed to actually get better for a little while, until the morning I woke up with a carpet rash spanning from my neck to my thighs that would last until I gave birth three months later. Different, but definitely not better.

There were creams and ointments that had varying effects (and varying side effects). Exercise helped. Lowering my stress levels helped, but was as feasible a prescription as “Get taller.” There are some things we simply have to learn to live with. This past year, I essentially gave up. The ointments that I’d gone back to using during the day (when I was away from the girls) were thinning my already sensitive skin. The phototherapy treatment just wasn’t practical. Heck, I couldn’t even find time for a regular tanning booth (which is the next best thing.)

About three weeks ago, I noticed that my legs, for the first time in as long as I can remember, felt smooth. Then it was my back and my sides. All of it. My elbows, my knees, my ankles – all the places that psoriasis had plagued me for years and years and years – they were smooth. It’s not gone. My skin still doesn’t look “normal,” so to speak, but it feels smooth.

I’ve been nearly giddy since this has happened. I can’t really explain how huge this is – the impact that it is having on my confidence, on my clothing choices, on me. Nor can I explain what happened.

I had an appointment with my dermatologist right around the time that it started to ease. She shrugged and said, “It happens. Perhaps you’re through the worst of it and it’s simply on the decline.”

I’m sharing this story for a reason.

The reason is that had I been using any kind of treatment prior to the last three weeks, I would be shouting from the rooftops that I’d found the cure for psoriasis. I’d be telling everyone I know who is affected by it that THEY HAVE TO DO THIS RIGHT THIS VERY SECOND BECAUSE IT WORKED! The proof would be in the pudding, people. Nearly clear skin. For the first time in twenty years. Clearly, I’ve found the miracle cure. It is … whatever I was using / trying / doing when the change happened. Or to put it another way, because I’m sure you see where I’m going with this, when  years of work and various types of support began to come together and blend with time and readiness and maturity into a perfect storm of progress. And whatever it was that we tried last would be THE MIRACLE. It would be THE ANSWER. It would be the sorcery that put the frosting INSIDE the fried dough.

You get this, right?

If I had a dollar for every time that someone said to me, “Have you tried [eye of newt] for your daughter? Because I have a friend whose son became SO MUCH LESS AUTISTIC after using it. The stuff is a miracle, seriously. I know the lady that she gets it from. Want me to give you her number?” I’d be rich enough to buy my own damned Taco Bell. No, I don’t want her number, thank you, I’m pretty sure I’ve already got it.

Whenever I hear about a miracle treatment for our kids, I ask the same question. Did this miraculous change / progress / breakthrough happen in a vacuum? Were they employing any other programs / therapies / teaching methods at the same time? The answer has yet to be No.

My daughter has made staggering progress over the years. If you go back to the beginning of Diary and follow her from where she was then to where she is now, you will see how far she’s come. Because of that, people ask me all the time what the key has been to her success. Did we chelate her? Lower her heavy metals? Give her antioxidants? Probiotics? Put her on a gluten-free, casein-free diet? Did we spend thousands of dollars on Son-Rise? What was the answer? Was it ABA? Was it Floortime? Was it RDI? Was it PECS? Was it typing? Was it speech therapy? Social Thinking? OT? PT? What was the miracle that changed everything?

The answer is none of the above before “What was the answer?” and all of the above after it. The answer, for us, has been a cocktail of the bits and pieces of various methodologies to which our daughter responded positively, shaken together then mixed with a heavy pour of love, respect, patience and time. It wasn’t, and I dare say it’s almost never, one thing.

When someone tells you that they’ve found the answer, the miracle, the key to it all, I beg of you – ask them one question. Did it happen in a vacuum? If they say, “No, but it was the only thing that had changed,” think about what that means. Was it really? What about their child? What about the skill acquisition that happens over time with dedicated support teams? What about maturity and life experience and the readiness to learn that happens when everything coalesces at the right moment in the right way and suddenly successes begin to build upon themselves and progress is happening and in the excitement, we do what humans do … we look for the sorcery. And we believe it must be the very last thing that we did.

I get why people ask (God, I get why they ask), but I don’t have easy answers. Not everyone progresses at the same rate. Sometimes progress seems non-existent, and I know how hard that can be. And then there’s regression, and yeah, that’s even harder. So we look for the sorcery. But I don’t have it. I don’t have life-changing pills or doctors or recipes or homeopathic diets to follow that will offer immediate success. I just don’t. And, throughout our journey, I’ve remained very skeptical of those who claim that they do. Especially when they’re profiting off of that claim.

For us, it’s the cocktail of therapies and love and patience and time, and yeah, some dumb luck. I’m sorry, but that’s all I’ve got. But hey, it does pair quite well with a couple of these …

Screen shot 2014-01-06 at 5.43.52 AM

 

 

39 thoughts on “what is this sorcery?

  1. I’m absolutely thrilled for you about your smooth skin, Jess. Whatever it is, just revel in it. And I certainly get the rest of it. Brooke is headed in the right direction for any number of reasons, including great parenting, her own will, creativity (and sense of humor).

    Love you,
    Mom

  2. AMEN! There is no one perfect treatment, but there are hundreds out there willing to sell us a bridge (hope).
    As for the psoriasis, I am with you! I have tried a little of everything! My dad has suffered with it for years and actually has light treatments (insurance pays for him to tan!) and he uses head and shoulders as a body wash. My bedside table looks like a pharmacy and my husband just shakes his head at my nighttime skin rituals!
    xoxo!
    Becky

  3. Thankful for your healing/improving, and nodding my head in agreement with you and Invisible Strings. Totally obsessing on my need for Cinnobons. I wonder how many weight watchers points in a serving? Since I am guessing there’s six in a serving. Or twelve.

  4. There is no one thing for us either – it’s a combination of many many things, mostly led by watching and listening to my kids’ behavior and reactions. And the flip side for us is that when they are struggling, I can’t say it’s this one thing that’s causing it. My kids – all of my kids – are complex, unique individuals. As they should be.
    As for those gooey bites of deliciousness, I’m going to pretend I never saw this. Sorcery indeed.

  5. I think I just found a little bit of “long lost family”. I have had psoriasis forever (with similar experiences) and our 15 year old daughter was just diagnosed with Asperger’s (and of course, we are all on overload). What a treasure to find a place where someone “gets it.” Thank you.

  6. Just this weekend I was asked again if I had been administering a certain treatment for my boys, who are in the middle of a “development burst” right now. And I mean no disrespect to those who responsibly try alternative methods when I say this, but I’m insulted whenever I hear it, because it takes away from the amazing ability my children possess. So often, parents of autistic children forgot that their children are still children, and will most certainly develop and learn and grow in their own time. Yes, we participate in therapies, but the success of the therapies do not solely lie in the therapy methods; without my children being as amazing and capable as they are, the therapies would still be unsuccessful. No sorcery for us, either- just time, patience, awesome therapists, and my incredible, inspiring children’s potential. And of course, lots of love, spinning, and random bursts of song and dance 🙂

  7. This would be the perfect place to link again to the article from a few weeks ago re the passage of time and how it can do wonders for our kiddos. (And us, but not like I was ever in a bad place and needed to get better or come to terms with anything. Ever. Ahem. #sarcasm) I’d link to it if I wasnt a spaz on my work computer sneaking in internet time….

  8. Ok. Never have I been so thankful that a restaurant changed it’s menu offerings. A few months ago (several months ago?) they changed their rice which is what my ASD kid liked at Taco Bell. And since they no longer have the rice he likes, Taco Bell has fallen out of rotation. So now the question is — do I venture to Taco Bell just to try the Cinnabon bites (’cause wow do they look good) or just pretend you never mentioned them?

    I copied M’s quote to my quotes folder. I see K’s progress much the same way as Brooke’s — hard work on his part, love and respect on ours and time. A whole lot of time.

  9. Thanks Jess. I really DID NOT need to know about those balls of happiness – filled with love. #sarcasm
    And thanks Katie. I will definitely be using that line in the near future. #notsarcasm

  10. I have been guilty of doing exactly what you’re talking about. As I have gone on in my own path in all this, I have realized what you’re saying is spot on. Time and patience, love, respect, and acceptance have been the key to progress. I have learned to let go and let her bloom at her own pace. When I first read “welcome to the club” over 3 years ago, I thought I got what you meant. I have gone back and reread it many times since then, but with a much greater self awareness and understanding of Cymbie’s specific challenges, as well as her talents. There was a time that I had to pin any progress on whatever the latest therapy or change we had made. I just don’t look at it that way anymore. We are still piecing together her quilt but I recognize that the time, attention, and care we give to putting it together is what matters. Oh, and though we’re still “climbing the mountain” I have absolutely been able to look down and take in the view. 3 years ago, I didn’t believe you when I read those words. Now I not only know them to be true, but I live in them every single day as my girl just continues to amaze me with her beautiful mind.

  11. it’s funny, i’ve been thinking about this issue all week…it’s what made the ABA post stand out so much, I’ve been thinking a lot about the cure/cause of the week thinking that continues to plague us.

    Just last week a guy on twitter claimed to know what was causing autism…and he even tried to cure my asperger’s! over twitter! and he was completely sincere. i made a post about it, trying to find the humor in our interaction…but honestly, i was pretty bummed out, frustrated. because i could tell that this guy was going to believe his nonsense no matter what; will never get how harmful, damaging his claims/thinking are. And at some point, his ideas will convince someone and spread the nonsense to a vulnerable family, people just looking for some answers.

    I’m new to social media, and just recently I’ve noticed an uptick in the number of people…some of them quite popular…selling snake oil. I know they’ve been around forever, will continue to be around forever, but social media has really given them all new ways to latch on to families and communities, like parasites. and the one common thread with all of the snake oil salespeople: certainty. they just know that they have it all figured out…they’re the ones with the answers. certainty is definitely one of the defining traits of a fraud.

    Anyway, thx for this post…your writing always gets me thinking, helps clarify so many issues.

  12. Over Christmas break and not having daycare, I had a lot of time to really observe and reflect and think and ponder and wonder – “What would life be like if he started talking RIGHTNOW? What would life be like if sleeves didn’t cause him to flip out? What would it be like to sit down at a table and eat together, or for that matter, for him to feed himself things that aren’t cut into pieces he can’t choke on? Or for him to use a utensil? Or to use the toilet?” And then it hit me – I have no idea what it would be like, because THIS is our life. And despite all of the challenges and the fears and the stress, and the want to gorge on deepfried cinnabon bites (#notsarcasm), it is a GOOD life. It is a life full of love, and hope, and laughter, and tears… just like it would be would he be neurotypical. And I’m not sure had I a magic wand, would I change anything, for fear that changing that one thing would result in butterfly effect… and this life is too beautiful to risk it.

  13. I recently went to Taco Bell and ordered two chicken baja chalupas and ordered the heavenly bites, too. Wow. I gave ONE to my husband. He said, “Eh.” MMMM more for me. They are truly excellent and if it wasn’t a 19% downward grade (1.9 miles of downward grade) to go get some, I would be ON IT.

    But instead, I think I will go back to bed, since all of the kids are in school, which means I need to suck up the quiet with a straw, since I haven’t had too much of it in the fourteen days that these children have been home on vacation.

    And why do they call it vacation? It didn’t feel like a vacation. At least, not to me.

  14. Going off on a little tangent: Every. Single. Person with psoriasis that I know has an autistic child. My dad. My partner. You. This is how crackpot science starts: with people like me seeing anecdotes as evidence.

    • I have psoriasis and I have a son with autism. It is not secret that there is an auto-immune disease connection theory.

    • My dad has it too (as did my mom’s sister – quite severely), but I’m his and my mom’s only child and, as far as I know, not remotely autistic. Which neither proves or disproves anything, cause, yeah. 😉 Oh, and maybe we have the generation-skipping strain. Hmm, could be it. #sarcasm

    • As the person who brought this up, I need to interrupt here. I’m going to say this in layman’s terms: There is no link, except that psoriasis and ASD are both genetic predispositions. That means that once it runs in the family, you’re going to have it crop up here and there among family members. Some might have it severely, others might not show any signs. But all descendants will have the marker. It doesn’t go away. Just because anecdotal evidence shows a lot of correlation, doesn’t mean there has to be a causal relationship, or even a cause they both have in common, apart from simply being conditions that DON’T GO AWAY but only lie dormant. They could have a common trigger, or they could have wildly different triggers. It’s simply part of your genetic makeup. Like dark skin, or red hair. Once a family has the red hair marker, that’s going to crop up every so often in their descendants as well.

      • And perhaps, since this skin condition tends to worsen with stress, that might be why it is so prevalent. I get migraines, too and know that most parents of kids with asd get them. Stress kills.

  15. You say it so well, Jess! This is something that took me years to learn, at times it was a painful lesson, and I think it’s something only time could teach me. There was no miracle treatment, but I’m glad for all of the “bits and pieces of the cocktail” that have helped us make progress.

  16. What a relatable parallel for me, as I have also had psoriasis since I was very young, and in frustration stopped using any medications or therapies, and also had a mysterious disappearance of my worst symptoms (mine was on the hands, feet, and scalp…no clothing to hide it!). Although it does flare up if I change my laundry detergent, mostly I would say I’m no longer “afflicted” by psoriasis. But what a different experience for anyone else who has it. And how similar to our kids, and their “spectrum”. Thank you so much for this post, and the freedom for us each to become our child’s “master mixologist” in the world of therapy cocktails :).

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