On Appearances

I wish I had a dollar for every time I have heard, ”He doesn’t look autistic," "he looks normal,” and “oh my kid does that, it’s normal”.  Such innocent throw away comments that come from a good place and are usually meant to support or make me feel better.  Don’t get me wrong, I don’t blame the deliverer in any way but they do stir a torrent of emotions in me.  After these or similar comments, I usually have an overwhelming need to explain all the difficulties Kerry and I face on a day-to-day basis.  This defensive response is then directly followed by a feeling of guilt because I quickly think of some of Jesse’s ASD affected friends and how much harder their families have it, which in turn leads me to be thankful for what I actually have.  This parenting gig is a roller coaster of feelings that truly never gets easier to ride. -Kelly, Jesse's Mum: Autism Undressed blog that can be found here

Every...damned...day. 

I think that this is the type of "don't know what to say so just input something that sounds appropriate" response like when someone goes to a funeral and says "I'm sorry" to the family of the deceased. My brain never computed that and, well, I wanted to punch someone or something every single time a well-wisher said that to me after my grandparents died. I hated that expression; it was absolutely useless and well, it didn't make ME feel any better, so what then do I say? Thank you?

Well, let's have some fun with this and take it even further: when someone says to me "Jackson doesn't look/behave/(fill in the blank here) like he's autistic" OR even more PC "your son does not appear to be a person with autism" (because PERSON first language is SOOOOOO important, unless you're living it. Yes, I DO say that I AM autistic. My son is autistic. Because it is just a much a part of us as having a brain or lungs or blood in our veins. I do not need to say I am a person with autism- why waste time with all those extra syllables. Okay, another blog post on that one, maybe.) Back to the story...You say our outward physical appearance doesn't match "autism" and my response will not be a good one. Um...say that to me on a bad day and I might tear you to shreds. Most days, I'll blankly smile and mutter something along the lines about how much work I've been doing with him since he was a toddler. I might tell you a few cute stories to help you to understand, but please know, the impulse to throw something is on a low boil. (I blame this on my ancestry...Us hot-blooded Sicilians have been known to throw a table or two...so maybe it's just my roots.)

And it's like Jackson so eloquently said recently, "Mama, what exactly do they think autism looks like? I have autism. I look like me." Exactly buddy. Autism occurs in our brains. Persons who are non-verbal, or have tics, or need to stim may be more what main-stream media has chosen to personify as autistic in the past, but we certainly do know that autism is a SPECTRUM of all sorts of people who certainly do not all have a cookie-cutter outside. So, there is no "look" to autism. 

Don't get me wrong. I get it that people are incredibly uncomfortable and need to relieve pressure from them. Like the well-meaning former friend of mine who told me "Well, I know someone...my cousin's child is a selectively mute child with autism, so it could be SO much worse." It ALWAYS can be much worse. But, when you're living it and staring at your child who no longer wants to do the things he previously loved and no longer wants to have his friends around and suddenly lines matchbox cars up for hours and doesn't want to go to the pool...perspective is the last thing you need force fed down your throat. Comfort and love is needed instead.

Take it from me. Please, don't assume that just because someone "looks" whatever our society deems to be 'normal,' please DO NOT tell them that you cannot believe that they are suffering from X, Y, or Z. It could end your friendship, cause you to miss out on some incredible people or worse, something could be thrown at you. Around me, it might just be something you sit around to play games or to eat. (Note: To this day, I do not have any recollections of table-flipping, but the urge is there from time to time. ;)

Here's something you CAN do: listen. Don't half listen, trying to find a way to make the person feel better. Because, you most likely cannot. But your listening will do them a world of good. Especially when it's not coated with a sugary sweet BS statement that is oozing with platitudes and hurtfulness. And, offer a hug. Or a warm meal. Or a night off. Think of the things that you CAN do...they are plentiful. Most importantly, as soon as "I know someone" even starts to come to the tip of your tongue, swallow it. It might just save your friendship or your table.

Note: Anytime I mention my son, Jackson, in a blog post, I read it with him and ask his permission. I ask for feedback and make necessary changes to make this place be a safe place for him too. 

On Labels

There seems to be a giant hang up on "labels" with the diagnosis process.

Here are my thoughts on this...

If my six-year-old son couldn't function through a meal at a restaurant without banging his head into a wall or couldn't safely navigate a diner to get to the restroom without getting second degree burns, he needed more help than we, as his parents, were able to provide him. Regardless of what label was being placed upon him. Regardless of which forms of employment such diagnostic tests and labels might keep him from as an adult. 

Did it all mean anything if I wasn't able to help him navigate his childhood and adolescence? Would I have been doing the best job I could as his mother by ignoring all of the issues that had been compiling since infancy, especially since they were imploding on our family? No.  I owed him way more than to fly under a label radar. I owed him to get the best help and the most opportunities for success as a human.

And what about myself? Being diagnosed at age 32...my own therapist asked me what good "just another diagnosis" would do for me. She wanted to know why I would readily subject myself to that. Simply put, I felt like it would give me so much more than it could take away from my life. And it has. 

I am a strong believer in education- specifically in self-education. Often times, doctors find me obnoxious at best because I know a significant amount of information regarding many of my previous illnesses- usually more than they do. There has been a "Munchausen" or two thrown around at times. But, this is just because once I've been diagnosed, I want to know how I can best navigate and make myself the best, healthiest me I can. 

My diagnosis of autism is no different. I have read books, watched movies, attended conferences. I have plunged myself into this world of a "label." The more that I have learned, the more I have been able to have a better self-awareness of my childhood, many memories and even my relationships. Without the testing, without the "label," I would still be wondering what is wrong with me? and why am I so broken? instead of: This is how my brain functions; I need some time to recover from all of this sensory overload; I cannot verbalize my emotions right now.

So, so many people get hung up on the label. Neurotypicals (non-Spectrum folks), especially parents of children who are in the process of possibly getting diagnosed, worry about the label. The label. Goodness, THE LABEL! But, here's the thing, whether that person is three, six or thirty...there will always be this underlying difference. That person will ALWAYS FEEL it. So, the label that society places on it and the implications that it gives...well, it doesn't change the insides of that person on the spectrum. With or without the words, our brains FUNCTION differently.

End. Of. Story.

Note: Anytime I mention my son, Jackson, in a blog post, I read it with him and ask his permission. I ask for feedback and make necessary changes to make this place be a safe place for him too. 

On Autism

It was over a year ago in May. Brent and I went together to see the doctor who had run hours and hours of tests on me. And together, we faced her...awaiting the results.

"Without a doubt, you have all of the traits of a person with high functioning autism, Sara," the doctor said. For a moment, I was shocked. Then, a wave of relief overtook me.

We discussed the other diagnoses that had been assigned to me years before, ones that clung to me like a ball and chain around my ankle: OCD, depression, anxiety, PTSD. She explained that when other doctors had seen "OCD" they didn't understand that I was rigidly following rules that my employment had depended upon when I worked in childcare and as a short order cook. Hand washing was a requirement. The depression and anxiety: those were situational and often followed times of change and transition that persons with autism struggle with. And well, the PTSD was situational as well. I had since made strides to overcome the issues that surrounded that.

So, autism. I was no foreigner to the word or the diagnosis. Six months earlier, my beautiful son was diagnosed himself. And if it wasn't for that, I wouldn't have ever had the inkling to get myself tested.

The similarities were uncanny...the need for certain sensory input: soft blankets, soft clothing, tight hugs; the avoidance of loud noises, crowds, etc; the awkward feeling when no one seems to understand what you're trying to say because you cannot make the words in your brain match the ones coming out of your mouth. And, this annoying "but they LOOK so normal" statement that follows persons who are different on the inside but don't have a glaring "look" of being differently-abled on the outside.

So, well. High functioning autism. Asperger's, it would have been known as before the powers that be changed the DSM. High intellect, need for routine and dislike of change, quirky, socially awkward.

The running joke in our house is that "I am Sheldon Cooper." If you've seen the Big Bang Theory, you know what I'm talking about. There have been so many episodes that Brent and I have watched together and looked at each other with this ever knowing glance of "truth."

And here I am, Same Sara. I'm honored for you to join me in this journey as I have officially just came out: I am autistic; I am learning to embrace it just as I encourage Jackson to do the same everyday.

Note: Anytime I mention my son, Jackson, in a blog post, I read it with him and ask his permission. I ask for feedback and make necessary changes to make this place be a safe place for him too. 

Thumb-Lovin' Intervention: 24 hours In

With Easter rapidly approaching, we are closing in on Jackson's self-set goal date of quitting his thumb habit. Yes, he is almost six and we have not been able to get him to stop.

We have been working on this for YEARS. We tried the foul-tasting no bite nail polish. He simply learned that he'd get used to the taste after a while. We did the toy rewards for increments of time that he went without it. We have shown him pictures of what could happen to his permanent teeth.

We've yelled. We've bargained. We have pleaded. No joy.

So, last week, we bought the T-Guard. (Jury is still out on this one...) Yesterday was the first day of use. Here is a recap:

There was a spectacular exhibit of will regarding putting it on...after which he exclaimed that it was pretty cool. Then, he was disturbed by the soap being stuck in it when he had to wash his hands, until I showed him the hole at the bottom for precisely that reason...and, I dried it with a Q-tip.

While cleaning up Legos, he realized he could use it to carry more Legos in his hand. Bonus!

After walking away from said cleaning (since I was repeatedly the sole cleaner), I went upstairs to take a shower. While getting in, I heard him begin to throw a fit. Unable to self-soothe, he screamed pitifully, "Can SOME-body heeeeelp me, please!" I rescued him this time.

At bedtime, he proudly showed Dada how he put it on like a big guy. Yet, it took almost an hour to get him to sleep because he "doesn't know how to fall asleep without Suck Thumb." Finally, after forever of me laying with him, using guided imagery of his future driving police cars, putting handcuffs on bad guys, and holding his weapon, I was able to help him fall asleep.

Unsolicited advice warning: give them the pacifier...we were so against it and now wish he wasn't addicted to a part of his body. Granted, I know there will be a day when there's a whole different obsession...

Perhaps we shouldn't have started this the day after Daylight Savings time? Oy.

Feminist Musings of a SAHM with a Steam Mop

Yesterday, we were supposed to get walloped with a huge snowstorm, "supposed to" being the operative word here. It did not happen, yet my boys were home with me for the day. It was quite lovely because I had a terrible night of sleep and got to hang out in bed for half the morning while Brent entertained Jackson. And then, as my afternoon fibro fog began to hit me, I got to take a nap. God bless my husband; he is a good man. (Note: I did manage to get our oven self-cleaned and the racks washed; that was my great achievement of the day.)

Today, my energy is still low, but better than it was yesterday. Today it was my turn to be "on" in the morning for Jackson's two hour delay. (I will say, this whole county school system VA has going is a crock...They might have gotten a few inches of snow west of us, but we had literally sunny skies and a few puddles this morning. C'mon, FCPS. You can do better than this!)

I digress. Jackson accidentally dropped a glass cup this morning, leading to a full-on attack of my kitchen floors. After removing him from the glass fragments, I swept. I vacuumed. I took him to school and then called Brent.

A dear neighbor of my allowed me to borrow her Steam Mop weeks back and I literally fell in love with it. I mean, covet city here! So, while everything was removed from the kitchen, I called Brent with my request to purchase our very own Steam Mop. I'd done my homework and found that the cheapest I could get the one that had the best reviews was at the Exchange...and that's not far from Jackson's school, right?

So, with his...permission (?)...I purchased it. The fact that I had to ask "permission" is perhaps a bit haunting in and of itself. Brent and I have always had the mindset that we both work; he just happens to do it outside the house while I'm in it. Yet, we have recently committed to each other that we would be more cautious in our spending. So, this being a larger-ticketed item, I felt like we had to have a conversation about it. Let's refer to it as a financial agreement instead of "permission" then.

Hurried home. Read the instructions. Got myself to steaming the tile flooring that I LOATHE. But with this steam mop, I could literally do it all day. The instant gratification I felt when I saw the floor cleaned without having to be on my hands and knees scrubbing for an hour was worth every single cent I spent on that beloved Steam Mop of mine.

This must have been what it was like for my grandmother to have a washer and dryer instead of having to wash clothes by hand and put them on a line, right? Or, the liberation it felt to put dirty dishes into a machine that would clean and sanitize them in an hours time...I just never thought it could make me so...simply put, happy.

This domesticated, stay-at-home Mama (whose husband still questions whether or not I'm a feminist) has a heart that is filled with joy today. Part of me feels like I'm taking a step backwards, considering most feminists would believe that I have given up that stance by being a homemaker, plain and simple. Let alone that something as domesticated as a steam mop could fill my bucket...

The feminist in me questions how an appliance could do this. It brings up all sorts of negative feelings. Part of me feels like the money could have been spent in so many other ways that would benefit my family or others. Part of me feels a bit guilty-  I am overjoyed over an item, a thing, that in another country might be worth a month's worth of meals? And still, another part of me screams This is what your life of wanting to go to graduate school for Women's Studies has become? 

But, is that what this is all about?

Honestly, I don't believe so. I think it's the simple liberation that my floors can be cleaned and I won't have to scrub them until my knuckles are raw. The fact that in my current state of body, I can spend more time focused on the things that bring simplicity to my life and allow me to focus on my family, not being such a Martha. And, that in this day and age, I have the CHOICE to stay at home, that I am not forced by society to do so...that is okay with the feminist inside of me.

Fibro-my What?

Okay...Surely you're all wondering why, exactly, I have been AWOL with this whole bloggity-blog thing for the past month. Well, maybe only one of you have been. (Bec, that's you.)

Well, I have been riding a roller coaster of appointments and treatment changes and honestly, trying to educate myself before coming back to you all.

As of, eh...early February, I have been diagnosed with Fibromyalgia, which is a chronic, wide-spread pain syndrome that is quite fascinating. Apparently, if you think of a person's pain and external stimuli as a car radio set on a reasonable level with, oh, small children in your car...a person with Fibromyalgia experiences that same stimuli (internal or external) as a stereo cranked up so high that you'd hear it a mile a away from the inside of your own vehicle.

When the Neurologist and Rheumatologists were pushing on parts of my body that nearly knocked me off the table in pain, I now know why.  Those are called "Tender Points;" there are 18 possible ones in a fibromyalgia patient's body.

Fibromyalgia is known to cause fatigue, random pain, depression, soreness, stiff joints, sleep issues, and a myriad of other symptoms. However, there is no specific diagnostic test that a person can have that points directly to it. A lot of people (read: medical providers and average Joes) consider it a "junk drawer" diagnosis.

A part of me has been celebrating that we now know:
1) where the pain is coming from- why I practically live on ibuprofen and a heating pad every night
2) why I'm exhausted easily after minimal exercise or daily routines
3) where thyroid issues and adrenal gland issues and other of my random problems throughout the years have been connected

But yet, there's a huge part of me that is grieving. There's a stigma that fibromyalgia is not a "real" diagnosis. (To which I say, do your research...I have been and it's legit.) I'm tired. All the time. I call it "Mack-truck-itis." I'm sore. I'm dealing with three weeks of going back and forth with the insurance company about why I shouldn't have to drive to Bethesda for physical therapy from Kingstowne.

All that just to say, if I haven't shared with you lately that you're important to me, you are. I'm running on fumes and I wanted to let you all in on why. I think I have found the new direction for my blog...Not necessarily complaining to all of you about my struggles, but educating people and sharing the facts about this syndrome that everyone's heard about from the big-pharma commericals but no one really knows about.

I'd love to share this journey with you, as I humbly work with my mind and body (and copious amounts of caffeine) to learn, share and educate.

NoVA Weather?!?

Although we were not in Northern VA (NoVA for all of my unknowing non-Metro DC buds) for "Snowmageddon" or whatever ridiculous name that storm was called. We have survived:

1) An earthquake

2) A hurricane (Irene)

3) Snow "storms" (AKA: dustings) that cause apocalyptic accidents

4) Super Storm Sandy

5) The Derecho

Call me a quitter if you'd like, I'd rather not round out our weather life experiences in NoVA with a tornado. I know, it's not all about me...however, I would love to be able to go to bed tonight without the fear of a tornado ripping through my town house. (That isn't REALLY mine...that we have to move out of in about four months...I digress.)

So, if you can all send good juju and prayers to us here, it'd be much appreciated. I'll do the same for you tonight.