confessions

Can I be your apostate friend?

I’ve danced around it in posts published, and addressed it directly in posts I was entirely too afraid to publish.  I’ve wanted desperately to talk about the other thing going on, but was too afraid to for a lot of reasons.  Reasons that might probably still be realized when I publish this post, but I hope not.

I no longer believe in the Church of Jesus Christ of Latter Day Saints. I can’t say I’ve ‘left’ the church completely as my husband still believes and we still take our children.  It’s been a full year now since I came to this decision, and it wasn’t one I took lightly at all. When I was a member, I believed that people left for three reasons: 1. They never had a testimony to begin with. 2. They were offended by someone or 3. They wanted to sin.  This was just not true for me, along with most people who leave.

I’ve written no less than a dozen posts that go over why I no longer believe. They defend the amount of time I’ve spent studying and the sources I’ve used. They went over in detail the reasons I have; both historical and current doctrines and practices, and went into detail into how much pain this has caused me. At the end of the posts though, I could never hit publish. They might have made me feel better, but they would have been hurtful to those I love. I’ve made a lot of mistakes in “coming out” to friends and family. I’ve caused pain that was not necessary in an effort to defend myself. I reacted in anger to misunderstanding.  There is no manual for having your entire world view shift from beneath you. There is no guide for having the very thing you have built your life around not be what you thought it was. If I’ve hurt you in this process, please know that I did not mean to, and that I am very sorry. I was working from a place of deep pain and anger.

When I saw people leave, I misguidedly thought that they didn’t go through a great deal of pain. I thought that they excitedly embraced a life without church commitments, tithing and guilt.  I was wrong. This transition for me is up there with some of the hardest things I’ve ever been through.  I carried an ache of grief and pain that still lingers today. I worried so much before I told Lance that he’d leave me. When I told him I no longer believed, I also told him that if it meant saving our marriage and keeping our family intact, I would fake it.  He then gave me the greatest gift when he said, “I don’t want you to fake it. I just want you to be happy. I just want you to be yourself.”  We still love each other as much as we ever and are working through being a “mixed-faith” family.

The biggest reason I haven’t said anything here though, is because I was afraid.  I was afraid of what people would say. I was afraid of readers up and leaving- even though religion plays only the tiniest of parts on this blog. I was afraid of the same kind of pain I went through and the horrible things said to me and of me after I posted dissent to ONE thing in the church- gay marriage.  And I’m still afraid, really. But this blog is about me, and what I’ve gone through and am still going through is a huge part of that. Writing is my outlet, and I want to be free to use it for EVERYTHING I’m thinking or feeling. Not just the stuff that everyone can nod their heads in agreement to.

So, for whatever LDS members are left here I have a question for you. Can I be your apostate friend? Can we still be friends even though we no longer believe in the same things? I will never try to convert you to my way of thinking. I would never knowingly put someone through what I’ve been through in the last year or so. I’m willing to talk, and I think it’s important that members understand apostates better. It’s why I’ve addressed this directly: I want people to understand me- and people who are going through the same things I am- better. I want you to see that though I’ve changed in a lot of ways, I’m still me. I don’t hate the church and still fully believe that the members of the LDS church are some of the very best people in the world. I’m Mormon by heritage-my ancestors go back to Nauvoo. I can’t and don’t want to escape that legacy. The church is why I have my husband, and for that I will be forever grateful. If he can live with me as his apostate wife, surely I can be your apostate friend…

 

Abby · autism · confessions · Down syndrome

Sometimes, words just don’t work.

Abby is two. She’s every bit the two year old that my other two year olds were with an added dose of diva. She’s been SPOILED. She’s adored everywhere she goes and gets what she wants from her brothers. And we are paying. She’s been throwing fits like you would not believe (or would). Thus completely shattering the stereotype of all children with Down syndrome being loving and cute ALL OF THE TIME. She is most of the time. But not all. And she can throw a tantrum with the best of them.

And, as I found again today, so can I.

Other than the behavioral issues we are addressing, a huge cause of Abby’s fits is her inability to communicate her wants and needs. One of her many tantrums today lasted for over an hour.  I held her and rocked her as I tried to calm her down. It brought back the YEARS I spent doing that with Casey. Trying to figure out what was going on with him. The difference between the two is huge, though. Though both could not communicate at this age outside of a few signs, Casey could not be soothed. He’d spend hours upon hours screaming, and there was nothing I could do to help him through the storm.

While I rocked her, I scrolled through my Instagram feed and saw normal people living normal lives. Pictures of family outings, potty training, eating normal foods with normal liquids, all with captions of the words their children, lots younger than Abby, are using.

I was jealous. I was sad.

I tried to suck it up. I tried telling myself with positive affirmations that things were going to be fine. I tried to keep my anxiety relegated to the dark corner of my heart where it should live. I tried to remember all of my blessings and how far Casey’s come.  I tried to not remember the thousands of hours spent in speech therapy with him. I tried not to think about the thousands more hours I have to spend in speech therapy with Abby. I tried to have hope that she’d one day be able to communicate fully.

And then I stopped trying and cried. The frustrations fell with the tears, and I felt myself relax. All of the time I spent trying to convince myself with positive words only made things worse. Letting the frustration go in the form of a very ugly cry does not mean I do not acknowledge the good in my life, of which there is an abundance. It just means that there are different avenues to healing. Sometimes, words just don’t work. I needed to cry.

Both Abby and I stopped crying about the same time and sat sniffling and hiccuping for a while. She got through whatever it was that she needed to be pissed off about and I got through mine. We both threw a nice tantrum and moved on.

For now…

Abby · autism · confessions · crafts · Down syndrome

I’m jealous of you.

I see your posts. You talk about how hard it is to potty train your daughter that is younger than mine. Potty training isn’t even on our radar right now, to be truthful. That’s not going to happen for at least another year or so…if we’re lucky.

I’m jealous of you. 

I see your statuses. How tired you are from running from one sport to the next, then on to birthday parties.  My son can’t play team sports, he gets too overstimulated. He doesn’t get invited to birthday parties.

I’m jealous of you.

I see you at the store, you get away with people not looking twice at your kids- you don’t see that look of recognition- and sometimes of pain- as they notice your child’s extra chromosome. I see you in the malls, walking with your kids, not worried about what next sound is going to set them running in the opposite direction. I see you at my other son’s basketball games. Walking in from the parking lot to cheer for your child, as I sit with my son who is hiding in the back of my car.  His autism fills the space between.

I’m so jealous of you.

You capture every milestone as they come naturally for your child. First steps. First words. I capture those, too. But they are after hours and hours of therapy, sleepless nights and drained bank accounts.  You talk about goals kicked and awards won, I speak of services gained and lawsuits averted. You fought for your child’s place on team. I fight for my child’s place in the classroom.

I hate myself for being jealous of normal.

It’s not your fault you don’t have kids with special needs anymore than it’s my fault that I do. With my oldest, I loved meeting those milestones, even bragged about them a little. I didn’t get it. I had no frame of reference. I didn’t realize how great it was that he developed the right muscles in the right way to sit, crawl then walk. I didn’t get with my other typical developing child how great it was that speech set in without us having to painstakingly draw out language, bit by bit, sign by sign and sound by sound.

And I’m sure I don’t realize how lucky I am to have an autistic son who can talk, and a daughter with Down syndrome that is even as healthy as she is.

Jealousy is a worthless emotion. Even if it pushes you to do more or be more, you’re not doing it for the right reasons. I fight this jealousy.  And, on days like today, I lose.

I’m jealous of you.

Abby · autism · confessions · crafts · Down syndrome

Rage, rage.

My husband took all the kids to Carter’s basketball practice and to get some food so I could have some time alone. I thought I’d clean, yet, I find myself typing into a computer that has come to know me so well.

The things this laptop could say. The confessions I’ve made to people I’ve never met. The sadness that I hold and let out in tiny bits as to not overwhelm, but just enough to keep whatever grasp on sanity I have left.

Life is hard. I do not have the market cornered on sorrow, as I am reminded of often. Being a part of the Down syndrome community is amazing, but it also lends itself to the grim reminders of the fragility of our children, the fear that lurks around every cold, every fever, every sleepless night. Another life lost too soon, and there’s no way to exist in this community without that reminder.

“Death is at your doorstep. It will steal your innocence. It will not steal your substance”- Mumford and Sons

My substance. What am I made of, anyways? Life has found a way to test my resolve, to strengthen my spine, to bruise my knees. And now, as I teeter on the threshold of the great depressive abyss I find myself falling into all too often, I hear the words of too many echo in my brain:

“With everything you have going on in your life, it’s okay to be depressed once in a while.”

No. I will not. Too many times I feel myself being dragged down and I loosen my grip on the ground that I grasp as my only ally. I give in before I fight. Too many times I give every bit of fight I have to battles that are not my own. This time, I will fight.

I will not lay down and, in the words of Dylan Thomas, “go gently into that good night.” Sure, that poem wasn’t about depression, but I feel like it applies. I feel like depression robs me of the light I have in my life.

Do not go gentle into that good night.
Rage, rage against the dying of the light.

So now I rage. I fight. I will do whatever it takes to be FINE. I have too much to give to be robbed of my substance. I have too much to say to be robbed of my words.

and, quite frankly, I have too much to do to be sad.

autism · confessions · crafts · Down syndrome

Mantle Garland

I love the look and smell of REAL garlands at Christmas time. The problem is, the ones you can buy live or fake aren’t bushy enough for me (unless you’re willing to drop some serious coin on them. Did that sound gangsta? I was hoping it sounded gangsta), and making one out of all live plants is time consuming. I don’t like projects that take more than fifteen minutes and crap I have on hand, so I never do them.

just fake garland

This year was freaking GENIUS though, if I don’t say so myself. I bought your basic $10 fake lighted garland from Home Depot. Looked good enough on it’s own, but I wanted it to be bushy and alive and Pottery Barn like.

So I went out with my scissors (because having any sort of gardening implements is just beyond me, and I’m no longer allowed near chainsaws) and cut off branches from my boxwood bushes in my front yard. Yeah. Right there. Just waiting to be crafted with. And you don’t have to have boxwoods (and I had to look up what kind of bush it was…I had no idea) in your yard, anything that is still green now will probably work. Go look at Pottery Barn. Their pricey mantle decor is all fresh stuff. Just copy them. It’s all I do. 

Then I came in, took the branches and JABBED them into the garland. If they didn’t want to stay, I’d take one of the little fake branches from the garland (that are wired) and wrap it around. I did this with the garland already on my mantle, so I could work from the middle out, but I don’t even think that matters.

It wasn’t bright enough for me (it never is) so I took another strand of white lights that was half burned out  and laid it on top of the garland and then kind of worked it around the branches.

From there, Peyton and I added ornaments. We got a really pretty cheap set from Walmart that had some that were glittered and some that were brown. Sparkly and rustic all at once.

I found when adding ornaments, and someone with real crafting experience feel free to correct me if I’m wrong (and if you are brave), bundling them in groups of two or three just looks better. I also didn’t hang them from the branches, I wired them in deep so they looked more apart of the garland. I used the little silver hooks you use on any ornaments to wire them in.

Anyways, super easy. Took me about 30 minutes total, including cutting the branches (which I really didn’t even have to do, they broke off pretty easily and breaking them off was just a little cathartic).

For the life of me I can’t get the stockings to hang the right way. Maybe that will be a post for another day. Probably not though.

I upload pictures of all of these projects as I do them to my instagram account. In fact, most of the crap on this blog is in condensed form on Instagram. Feel free to follow me there. I’m @mostlytruestuff

autism · confessions · crafts · Down syndrome

Oh Christmas ADHD

Lance: I’m not sure you can put 2,000 lights on that tree…blah blah blah…wattage..blah blah blah engineer…blah blah blah…amps….
Me: Is that a challenge?!
Lance: why do you do that? Turn everything into a challenge?
Me: Are you threatening me?
Lance: hmph.

Yeah suckas! 2,000 lights and one tree that will probably burn this place down in a week because I’ve forgotten to water it.

So then I went outside to admire my work from the front yard and noticed that a bush I had covered with white lights was competing with my tree in the window. So I yanked out all of the lights. At 10 o’clock at night.  I still felt like that damn bush was competing, so I went into the garage to find some garden sheers or a chainsaw

 (true story, the place we were renting back in Virginia had a chainsaw that I rendered useless by sawing through the extension chord. I tried to tell Lance that it was a design flaw and not user error, because why in the world would you want to be attached to a chord if you’re chainsawing something? I’m telling you, it’s WAY less scary to chase someone with a CORDED chainsaw than a gas powered. It doesn’t matter as much with an edger, mostly because it’s just ALL unexpected when someone comes running at you with an edger. Chainsaws are really quite cliche)

 There wasn’t anything to cut the bush down with, but I got distracted super quick when I couldn’t reach something on a shelf. If only I was TWO inches taller. Then I started thinking about who is two inches taller than me. Then I thought about the people who are shorter (and thus, less scary). My brother is two inches taller, I thought, so I sent him a text asking him how tall he was.  This of course led me to send him a picture of a doll attacking Peyton in his sleep.

I’m getting new ADHD meds today. Life is going to get less amazing.

But probably more clean.

At least I hope. I have yet to do anything with all of the boxes the lights came in. In fact, I came into the kitchen to clean it and the boxes, and here we are.

Anyways, if you pass by my house and see a tree that looks like it’s on fire, it’s not. Unless it is. In which case, call 911. Thanks.

Abby · autism · confessions · crafts · Down syndrome

It’s Not Your Fault.

I’ve written about the absurdity of the so called “studies” that are finding the cause of autism in everything. They’re correlational studies (in one of my psychology courses, my professor made us all chant “Correlation Does Not Equal Causation!” over and over and over again). They don’t prove anything. I could go on and on at length as to why each of these studies are flawed or why they don’t really say anything more than we already know…but it really isn’t the message I want to share. And it’s boring. If you get nothing more out of my blog than this one stupid sentence, then I’ve done my job:

This is not your fault.

Casey’s autism is no more my fault than Abby’s Down syndrome. Researchers, the good ones, are continually finding evidence that autism is genetic. GENETIC GENETIC GENETIC. And even if it’s not, even if one day they decide that your child’s autism was caused by you drinking Mountain Dew during your first three trimesters of pregnancy (I did that on purpose), or whatever it is that your great aunt keeps posting to your facebook wall…guess what?

This is not your fault.

We as humans want answers. It makes us TERRIBLY uncomfortable to not know why things happen. It’s why so many people join the Anti-Vax Religion. Because even in the face of OVERWHELMING research, ANY answer is better than NO answer.  Because maybe knowing what caused it means that you have any damn control over it.

I know this because I’ve lived it. I was there once, too. I wanted it to be vaccines that caused his regression because that would mean that no longer vaccinating would prevent future regressions. When that didn’t pan out (again, research…) I kept looking along with the researchers to find whatever it was that I did to make Casey this way. Was it going to the dentist before I knew I was pregnant? How about the metal fillings in my mouth? Was it the Mountain Dew? I wanted answers.  I wanted control. With every step I took in that direction, I got another step away from the place I wanted so desperately to be: acceptance.

It comes down to this: If you had known that any of your actions would cause your child’s autism would you have willingly done it (please don’t make this into one of those “I love my child just the way they are pissing matches…this is not what I’m asking here…)? No?

This is not your fault.

When you can get past this, you can move on to bigger and better things. Acceptance is amazing. It doesn’t mean you’re okay with it all of the time, but it means that you understand that this is the way life was meant to be. And that it can be a really great life. Autism included. 

autism · confessions · Down syndrome

She Is My Heart

I pulled Abby out of the bathtub and dressed her on my bed. I knelt while she sat on the bed, so we were at eye level. She signed “More…more… more…. more MORE MORE MORE!” I went through our list of signs. “More..water? More bath? More…Music?” She smiled and giggled and repeated the sign “music.”

I watched as her tiny fingers awkwardly made the motions of a teeny weeny arachnid and she giggled as we washed the spider out.  We choose not to finish that song because I like it when the spider dies.

“The mommy on the bus says ‘shhh shhh shhh’…” Abby takes her “shh” finger and puts in front of my mouth and smiles as I blow on her finger.  After she gets bored of singing, she does the sign for “show.” “You want to watch a show?” I say. Abby smiles HUGE, throws both of her arms above her head and giggles as they land around my neck. She squeezes me tight as I stand to take her downstairs.  The picture of her smiling, arms above her head is one that I will not soon forget.

Emotions are hard to explain. What we feel is hard, if not impossible, to put into words. I will never in a million years be writer enough to adequately explain the way I feel about the little girl who has changed my entire world.  But when Abby smiled and raised both of her arms above her head I thought, “THAT! That is what my heart does!”

She is my heart.

autism · confessions · Down syndrome

Ways to make your next IEP awesome.

Even with the best teachers and staff, Individualized Education Plan Meetings are kind of terrible. I’ve spoken about how fun it is to talk about all the crap your kid can’t do, and even at it’s best, goal planning is boring. At it’s worst, you’re in for a fight that may or may not eventually require tears, attorneys and mediation. We’ve been lucky in the past couple of years to have had great IEP teams, and willing school districts. Still though, as I spend hours and hours preparing for those meetings, and then IN those meetings, I still can’t escape the thought that there could be a way, or many ways, to make them MUCH more entertaining.

So I took this question to my autism-blogger friends. What can we do to make these meetings AWESOME?  Here’s our list:

  • Every time someone says “with autism” correct them to “autistic” then do he reverse the next time they say “autistic.”
  • Ask them if they’ve heard of the (totally made up name) theory of development and see if they lie.
  • When they bring up goals that your child has accomplished, pat yourself on the back and say, “good for me” 
  • Bring notes, on the back of the notes have little ditties written so they see them when you lift up the paper. Like on Wayne’s World. 
    http://diewithglitter.tumblr.com
  • Give yourself affirmations at random times. “I’m good enough. I’m smart enough…”
  • Insist on doing “Duck Duck Goose” around the table to decide who has to read their section first. Demand outcomes of the game written into the minutes.
  • Bring all of your other kids in. And other people’s kids.   
  • Hand out your own goals at the beginning of the meeting. “The Speech and Language Pathologist will bark when someone says ‘IEP’ 2 out of 3 times with minimal prompting” Measure goals at the end of the meeting. 
  • Start every sentence with, “I read on the internet…”
  • …or “my psychiatrist says…” 
  • Insist on Person-first language then don’t use it yourself. At all.  
  • Come in all decked out in sensory attire : weighted vest, lap pad, chewelry, and fidgets.
  • Bring a visual timer
  • Ask for the meeting to do be done with a sign language interpreter. When they ask you why, call them a racist. 
  • Say “listening ears” whenever they’re not listening to what you’re saying.
  • See how long you can hold this face:
  • Every time someone speaks to you, respond with “Are you talkin’ to me?” With full DiNero accent.
  • Insist on keeping the chair next to you empty for your friend, Penelope Paddywack, who no one else can see.
  • Dress like Maria, from Sound of Music. Carry an acoustic guitar.
  • Answer everything in the form of a question. Like Jeopardy
  • Bring Scooby Snacks and throw one to the person whenever you like what they said.
  • Rap.
  • Carry a tiny chihuahua and say “That’s hot” whenever you agree.
  • At random intervals say “You bitches be crazy”
  • Show up with that black paint under your eyes that athletes use. So they know you’re serious.
  • Put tape on your knuckles part way through.
  • Talk in third person
  • Script an entire episode of Spongebob.
  • Use puppets
  • Nickname everyone on the team. Use names that describe their worst physical attribute.      
  • Answer every question with “on the advice of counsel, I refuse to answer on the grounds that I might incriminate myself”
  • Elbow your husband and wink knowingly (but act as if you thought you were being subtle about it and don’t think they’ll notice) at every other, then every third thing someone else says, shifting the pattern every so often, completely randomly. They will go nuts trying to figure out the connection between the statements you’re taking issue with.
  • At the end, laugh your ass off and then say “Okay you guys, let’s do the real one”
  • At impromptu moments, scream “The sky is falling!” Then cluck 3 times.
  • Take your own set of “minutes” and force everyone to sign them. “SLP carried on about her period for forty five minutes, fibroids were discussed. OT says her fingers hurt”
  • Bring your own attendance sheet with celebrity names on them. “Sorry, we either wait for Brad Pitt to arrive or I need you to sign a waiver saying it’s okay that we had this meeting in his absence.”    
  • Answer everything they say with “That’s what she said”
  • Receive a phone call. Proceed to walk the person on the other line through something important, like landing a plane or an appendectomy.  
  • Come dressed as William Wallace, complete with blue face paint
  • Speak only in Chinese phrases you learned from Ni-hao, Kai-Lan.
  • Go dressed up in full paintball gear and start shooting each person in the leg who says something you disagree with   
  • Bring your “translator” and have them translate everything said… into Pig Latin. 
  • Just keep doing this, “So what I’m hearing you say is…..” and say what you want to hear, not at all what they said. 
  • Say “I’d like to give all my answers in the form of interpretive dance” 

 aaaand you’re welcome,

Lexi Sweatpants and: 
Diana at Autism Rocks
Alysia at Try Defying Gravity
Jennifer at Anybody Want A Peanut 
Amanda at Confessions From HouseholdSix 
Lizbeth at Four Sea Stars
Bec at Snagglebox  
Flannery at The Connor Chronicles
Jessica at Don’t Mind The Mess
Becky at Defining Normal
Kelly at Uplanned Trip to Holland
 Varda at The Squashed Bologna: a slice of life in the sandwich generation


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autism · confessions · Down syndrome

I’m tired.

I remember during finals week in college thinking, “Man, a coma would be AWESOME right now!” I didn’t think that level of tired even existed…nor did I ever think I could be MORE tired.

Oh little college girl, you knew nothing of tired.

These last couple of weeks have been brutal. Hurricane. No power. Power. Inside storm shower. Cleaning carpets and couch. Again. Again. Again. Nor’easter. Autism. Pneumonia. Bronchitis. Weird periods.  Loud chewing.

Yesterday Abby had another ENT visit. This doctor seems to think that her hearing loss is probably congenital.

Permanent.

Loud Yo Gabba Gabba forever.

Last night the wind howled. I stayed up filling out 32 pages of paperwork for Abby’s evals, and even after they were finished I could not sleep.  Abby woke up coughing about 4,000 times. In between quieting her, I could not quiet my thoughts. The worries that I can only hear when my brain is quiet. Casey was up at 4 for the day.  Lance got up at six to get them ready for Casey’s neurology appointment in Providence.

This morning had a marathon evaluations and IFSP meeting. It lasted over 3 hours. Her fine motor skills are AT AGE LEVEL. Bam. Take that. Everything else, well, she’s got Down syndrome. Ain’t no thang (can I say that? Does it work? No. Probably not).  IFSP’s are a lot like IEPs. You talk about everything your child can’t do. They just can’t emphasize the diagnosis enough.

During the meeting, I felt a very large zit on the side of my neck. Before I realized what I was doing, I scratched that beyotch off. A second later I had a large stream up blood running down my neck. Awesome job, Lexo.

As soon as that was over, I went to lay on the couch for a minute when the phone rang.

Casey’s school. He’d been freaking out for TWO HOURS and they didn’t know what to do. Nothing was working. Feeling as though I’ve already been beaten almost to death with a hammer, I just told them to hang tight. I scooped up Abby and went to get him.

The teacher and the principal were in her office with Casey. He had thrown his shoes against the walls and was curled up in a ball on a chair weeping bitterly. I wanted to be mad at him. But I knew that his freakout was because his day didn’t go as scheduled. Can’t mess with that part of his autism. He can’t just go to school during math instead of at the beginning and have it be okay.

I can’t reward the behavior, either (he tried to fire the teacher, which is just a tad hilarious). And punishment for Casey at home is punishment for me.

His brothers just got home, and I now have to go normal mother things like homework and snack and love and affection.

I’d kill to only be pissed off right now about having to do homework with my kids or the struggles to get them to do anything around the house. I’d love to just be worried about what is for dinner and getting the house clean. I’d love to be bored at some sport practice or stressed out to making it to both dance and karate on time.

And it’s only now that I draw my knees into the fetal position. I’ve given every last piece of me to the stresses of this day I have nothing left to give. My typical kids get so much less of me than they deserve, and I don’t know how to balance that. I feel like I’ve been surviving for so long that my kids won’t know how to just live. I hate that.

I’m tired. I’m so tired.

confessions · funny

The Pharmacy In Me.

I wish I could make some of my titles have rainbows over them. I’d do that with the title to this post. The rainbow brought to you by Wellbutrin.

So once again tonight, I said entirely too much on Facebook. If there was a drug that helped with my brain-mouth filter, I’d take it. I’d take it so hard.

But there isn’t, so I’m going to go ahead and over share with you. I’ll tell you about the drugs I DO take for the things I may or may not have. I self diagnose and then run it by my psychiatrist (who looks JUST like Apu from the Simpson’s. Five points to anyone who knows his last name off the top of your head. Apu’s last name, not my shrinks. I can’t ever remember it so I call him Dr. Apu. Because I’m super respectful.) I’m pretty good at diagnostics. I mean, what with watching five years of Dr. Phil and having a couple of years of psychology under my belt, I’m practically a doctor. I’m usually right, too. That, or Dr. Apu just isn’t paying attention.

It’s the former. Or the latter. Or whichever word means “the second thing I said.”

Who the hell is emailing me while I’m trying to write a post?!So many distractions, so little something something.

 I stole this from: http://www.toothpastefordinner.com/archives/2005/Sep/

I have ADHD. This one I actually have been diagnosed with. There’s an app for that. Not joking. I take Adderall for it, but I really don’t love it. I take the lowest dose and I still have found myself grinding my teeth right out of my head. While I’m awake. But it helps. A LOT.  I hadn’t fully realized how bad my ADHD was until I started taking the medicine. It’s when I first discovered that normal people FINISH THINGS. They change their sheets not because they are peed on, but because it’s something you do routinely.  If someone or something interrupts a project, they go back to it. Blew my mind.

Anyways, I also have social anxiety disorder (I’m SAD) and awesome bouts of depression. The first thing (former?) is new. Not new as in it just started, but new as in figuring it out. I’ll write a post on that whole fantastic thing someday. Maybe. Long story short, it means that I don’t hate people, I just look like I do every time I’m around them.

But I don’t have bi-polar which is really REALLY a bummer. I mean, if I’m going to have depression anyways, it would be a lot cooler if it was paired with something like MANIA so I could at least have some awesome ups.

Alas, just bouts of depression. They are usually right around my period or after a super stressful time. Or during. Or at random. Or all of the time. To keep the blues and the hates away, I use Wellbutrin. I like the XR better than the SR (Xtended release and Someotherkind Release). It doesn’t work as well as Prozac for the blues, but it also doesn’t make me a STARVING lack-luster subservient libidoless  doormat. Prozac makes me apathetic. It’s like pathetic, but with an ‘a.’ (Five points to whomever comes up with the best word for the “A” in “apathetic.“). It also has the VERY unfortunate side affect of loss of appetite (for the first month, then my body adjusts and I go back to eating entire plates of french fries).

http://hyperboleandahalf.blogspot.com/      

Have you seen this blog? It’s the best depiction of depression that ever was or ever will be. Go there. And if you don’t get sidetracked, come back and read the rest of this post. Maybe even comment. If you do all of those things, you don’t have ADHD. I just saved you a doctors visit right there.

If you’re still sad after going to that site, you have depression. You’ve been diagnosed. You’re welcome.

For the random panic attack, my favorite friend in the fight is Ativan. I used to take Xanax, but it would put me to sleep for days. I still don’t even love the Ativan because I feel like it depresses my system out a little bit for the next day or so. And when you’re prone to The Funk, you have to be careful about that sort of thing.

So there you have it. Pharmaceuticals are the glue that is holding this mess together. I’m not even ashamed about it, either. This crap isn’t my fault any more than Wilford Brimley’s diabeetus is his. Wait, is it?

happyplace.com

So, what’s the glue that holds you together? What’s Apu’s last name? What is the “A” in “apathy” for? Go on.

autism · confessions

I broke.

Syndicated on BlogHer.comI’m on the floor of the bathroom with my fingers in my ears. I’m not sure it was even necessary as I wouldn’t be able to hear the cries of my child over the cries of my own. I’m crying so hard that my body has started to shake with exhaustion, and I’m sweaty from the exertion.

In the other room Casey screams from his carseat that I ripped from the car to buckle him in because I did not know what else to do.  He’s safe. Safe from himself, and so much worse, safe from me.

I hit him. I hit my six year old autistic son.

This was two years ago. It had never happened before and it has never happened since (and I feel a need to explain that it was opened handed and did not leave a mark…but it was so beyond wrong). I can give you every reason as to what brought me to this point: I hadn’t slept for days because Abby had pneumonia,  that this had been the third day in a row that I had to pick up Casey early from school because he was “a danger to himself and the other children in the classroom” and there was “nothing more they can do,” or that he had been screaming at that point for 3 hours, and in that time, he had bitten, kicked, punched and threw chairs and shoes at me and both of his brothers and was then threatening to hurt his baby sister. But you know what? Nothing I can say could justify my actions there. I didn’t hit the school, the pneumonia, or the the part of his autism that makes him rage. I hit my son. My beautiful boy.

I broke.

It kills me to put this out int he public. It kills me to relive this day. My heart still aches at the thought of causing harm to my beautiful little boy. So then, why am I telling you this? Because I think this is a conversation that is important. We as parents of children with autism feel a need to be “super parents.” I felt a need to fit myself into a mold that I thought a SN parent should fit. I didn’t ask for help because I was terrified of telling someone that I couldn’t handle what was on my plate. I wanted to look the part, and even moreso, I wanted to FEEL the part. I had a lot of people telling me how great I was based simply on the diagnoses of my children. I wanted to live up to what I thought I should be. In so doing, I had ran myself ragged, was overwhelmed, overtired and pushed beyond my limit.

I broke.

Parents of special needs kids are just simply parents. We aren’t endowed by God with any super powers outside of those that “regular” parents have. I’ve always felt like I wasn’t “allowed” to complain about even the regular things that happened with my SN kids. I couldn’t say that I was sick to death of potty training with Casey because I’d get that look that says, “You’re not supposed to complain about your autistic son! He can’t help it!” If regular parents can, why can’t I?  I’ve said it a lot that special kids don’t go to special parents, and I am proof of this. I’m no better than any other parent with any other kid. I was trying to shove myself into an impossible mold that no real parent can fit in.

And then I broke the mold (Yeah right. But I’m trying)

After that incident I fully realized how not special I am. It was a tough lesson to find myself in a situation I had never even IMAGINED myself being in. The thought of hurting my kids had never even crossed my mind. I’m not that parent. It pushed me to the point where I knew I had to ask for help. I knew I could never get that far gone again, and so in the effort, I had to give up on being the person I thought I should be and just be a better version of who I am. I like this:

I’m not saying getting good help is easy to find. That, my friends, is another battle completely.

We need help. We need respite. And in cases like mine, we need therapy and good antidepressants. We need to be able to talk about the reality that we are faced with. We need to not be judged any more than any other parent when we have crappy days and say we hate motherhood. We are regular parents in irregular situations. We need to do this OUR WAY and not be judged for doing/not doing what other parents of kids with the same dx’s are doing. We need acceptance of not only our children, but of us, the parents.

There’s a tendency within some SN groups to make the picture of raising a child with special needs much rosier than it is. I’m not saying that it’s not SO GOOD. It is. But it also can be SO HARD. I have promised to be honest about the good and bad in this blog, not just for you readers, but for me.  This is why I’m telling you this. Admitting I hit Casey is super hard. I’m afraid of the judgment. I’m afraid of hearing, “Well, I’d never get to that point!” I never thought I would, either. But if we can’t talk about the hard parts, we aren’t giving others the permission to do the same. And we need to be able to talk about it. And I’m not saying it needs to be done in a public forum, either. I am saying is that if you are having a tough time you NEED to talk about it. You NEED to seek help. Go online, go to a therapist, send me an email. Just talk about it. Get it out so you can deal with it and move on. There’s nothing worse than letting it build inside.

There is nothing that justifies hurting your child. Let me make this clear. There is no pain or exhaustion or stress that can should ever amount to what I did.  And I can assure you, the ramifications in my own life are still ongoing. I have not yet come to a place where my insides don’t want to fall out at just the thought of that day. I don’t know if I’ll ever forgive myself for it, and I’m pretty sure that is just. I need to remember.

I wish I had better answers for moms looking for help outside of just talking about it. I spoke to a couple of other friends who also have children with autism today about this very thing. Having a support system, at home and online is fantastic. There are great communities online, Circle of Moms was mentioned and I myself have frequented the Babycenter Autism and Down Syndrome boards.  Outside of the online world though, where does one go to get help? In your area, do you have programs for respite? How do you get them? How can we enable access to parents from all over? I’d love to hear where you are from and where you have gone to get services. I’d also love to be able to put together a guide for respite services and providers from across the country. If you know of one that is already in existence, let me know! What do you do for yourself? Are there parent support groups in your area? Have they been helpful?
confessions · fluffy posts · Rants

So blubbery right now.

I’m not going to lie. I want my blog to be read. I want readERS. I think anyone who blogs regularly in an open format like this wants that. I get all excited every single time I see that I have a new “follower” or find out someone else is reading here. Because it means that what I am saying has SOME effect. Maybe it makes you laugh. Maybe it makes you angry. Maybe it just gives you something to do while you sit on the toilet.  With every new reader, I feel renewed commitment to having this blog be as authentic and true to the life I’m living as it can be. Good and bad.

Ever since I decided to stop caring how people “see” me and just be myself, I’ve found this blog to be hugely liberating. And, at the same time, I’ve found how much I truly LOVE to write. How the words come to me when I sit at my computer. I really do work hard on each post. Each word is carefully chosen. Believe it or not, even the swears are thought about.

I’ve gotten a lot of shit crap poop from some close to me about the words I use. They told me that if I have people who are not members of the Church of Jesus Christ of Latter Day Saints (LDS or Mormons) reading this blog, I’m going to turn them away from being interested in the Church. They told me that I’m not being a good example of my family or of my Church.

I hope they are wrong. I hope that if you are a member of the LDS Church that I have not offended you with what I have said. The language I have used. I did not make this blog out to offend ANYONE (until my next post). It’s my personal blog. It’s my personal writing. I write the way I talk in everyday life. I write about that everyday life. Some days it’s hectic and loud and sweary. Others are peaceful, pleasant and nice. And in both instances, I still feel the hand of God in my life. I hope if you are not a member of the church, my writing has shown you my relationship with God and my love for the LDS faith, and maybe it has made you want to learn more.  Maybe not even about Mormonism per se- but about faith. About God. About good crap like that.

I did not set this out to be a “Mormon Mommy Blog” because, though I love the Mormon religion, that’s not what this blog is all about. I did not set it out to be an Autism blog, a Down syndrome blog, a craft blog or even an ranting mommy blog. I set it out to be ME. And for the last year, I think I’ve been {mostly} honest in the things I have said.

So I can’t say that it doesn’t hurt my insides a lot some can’t see past a “shit, hell, fart or damn” every once in a while to the true message of my blog. I feel it’s like someone who can’t see through the scar on my forehead or the extra weight around my waist to see me. They focus so much on the little things, that they are missing the big things. What I did set out this for this blog to be:

A blog about a semi-normal mom in an abnormal situation. A mom that wasn’t endowed on high by any special gifts in order to have her special kids. I want people to see that if a mother, one with ADHD and a small obsession with kittens (which she can never have, no less), can handle two special-needs kids and still laugh about life, they can, too. Maybe it will help someone to see the beauty in Down syndrome and choose to keep their baby who has just been diagnosed with it prenatally. Or maybe someone will see how great it is and it will inspire them to rescue a child with Down syndrome from a life in an adult mental institution somewhere on the other side of the world.  

If nothing else, I hope I make you laugh. I hope that I make coming back worth it. And for those of you who have come back, time after time, month after month, I can’t tell you how much it means to me. You say such nice things. You make me feel like I’m doing something good. I appreciate it more than you will ever, ever know.

You make me want to continue to do something that is cathartic for me. That helps ME more than I’m sure it will ever help anyone else. Because I need to write. Some days, like today, I need to just GET IT OUT. Thank you for staying along for all of it. All of me. And for not judging me or making me feel like I’m less of a person because I don’t do or see things JUST the way you do.  For seeing past my faults and my scars and my lack of personal hygiene to who I really am:  Lexi Sweatpants.

With that being said, get ready for my next post. It’s going to be super hateful.

autism · blogging · confessions

I Don’t Know How You Do It.

From the outside looking in, I can see why so many people say this to me. I have four kids. One has autism. One has Down syndrome. Casey can be tough. Abby gets sick a lot. My husband has an hour commute to work each way and so he’s gone from 8 in the morning to 7 at night (which could be WAY worse, I know…).

So I’ll tell you what I’ve told those who have said this to me:

I’m heavily medicated, I have the best husband ever and I have an outlet for my rage.

First off, I should make it clear. I don’t REALLY have it that tough. It looks like it on paper, but it’s really not horrifically hard every minute of every day. Casey can be tough. But he’s not all of the time. Not even half of the time now that his meds are working. Not even close. And have you met him? That kid is FANTASTIC! I adore him to pieces. He’s a good kid. He really does try hard.  He has his issues, but for the most part, we can predict when it’s going to be tough, and work around it. And it gets better every single day. Plus, even when he’s going through his funks, he’s at school for 7 hours a day.

And then there’s Abby. She has a lot of therapy. She has a constant river of snot that she hates having wiped. She’s given us a couple of scares. But other than that, she’s as pleasant as can be most of the time. She’s my little friend. She’s with me most of the day. I love it. I love being with her. She’s joy wrapped up in a tiny little girl.

So we’re good, yes? No. There are times when it’s tough. Really tough. The lack of sleep sucks.  Especially when it’s because Abby’s sick. There’s time where the stress does wear at me. Mornings are tough. Getting Casey ready and out of the house in the space of time between when he wakes and when I get the meds finally in him is a feat.  I hate therapy with Abby with all of my heart. Because I don’t have the attention span for it.  Because my house has to look somewhat presentable when the therapist comes because they are mandatory reporters… So on top of the regular mom crap that I hate SO MUCH (I hate cleaning. HATE IT) I’ve got all of these little extra things that sort of chip away at my resolve.

That’s where the antidepressants come in. OOOOOh hiissssss. Is this something I shouldn’t be talking about? Meh. I really don’t care. Why? Because I think it’s important that women, especially mothers of children with special needs, know that it’s not wrong to need a little bit of help.

Being a mom by itself is super tough. Add to it all of the little extra things that come along with having a kid with special needs and you’ve got a very depleted mother.  For me, that depletion meant that I didn’t have any emotional reserves. None. When things got too tough, I hid. It’s like I couldn’t take anything ELSE on besides the load that’s on my plate. I didn’t FEEL depressed so I didn’t think I was. But I was lashing out at my husband, I was angry. I was sad. It was unlike any depression I had gone through. I was used to the “teenage” depression. Where you’re tired all of the time and you hate your mother. This was stress-induced and probably has a lot to do with my hormones, too. So I take prozac. And it helps. A LOT.

Then there’s my husband. He is the very reason I can do everything that I have to. It’s like sometime in Heaven before we were born, God said, “Okay, I’ll give you this dude, and he’s THE BEST, but in order to have him, I’m going to have to throw in some tough stuff” and I signed right on the line. I can handle anything because I have Lance.  He’s a walking talking Valium pill. He is my very CALM. Have you been around him? It makes you sleepy.  And it’s just what I need. He isn’t crazy. He doesn’t really care about getting out and seeing the world or being overly active in anything besides sports and food, but he’s CALM. He’s happy to do whatever I ask of him and he follows me down whatever crazy path I want to go.  I’m a lucky girl.

Then, the outlet. This blog is my outlet. I feel better after I write, and even better after I hear that something that I’ve said or done has helped someone else. It’s like freaking crack to me.  I used to have hockey as my outlet. It was the very best of times. But no one out here wants to play with someone who sucks and refuses to play on Sundays. Because Sunday is a special day. And a special person. Have you met Sunday? She’s fantastic.

And that’s the other thing that’s been SO helpful about blogging. I’ve met some of my new most favorite people because of it. Like Sunday. And Holly. And Deanna (their blogs are linked on the side) And this other dude. His name is Jim and he’s my Blog Nemesis. When I first found his blog I wanted to LASH OUT. Break things. Because his writing is so good and he’s so funny that I was sure the minute anyone found out about his blog they’d go ahead and abandon me and my stupid blog. But then I came to terms with it, sort of. There are going to be better at this than me. There are MANY others who are (most. most are). But instead of being okay with it, for some reason, I’ve decided to make him my nemesis. I’m not sure what that means for him, but I’m sure it makes him tremble in fear. Like a girl.  So, go visit him at his blog. You’ll be as thunderstruck as I am that his blog isn’t huge with thousands of adoring followers who do his bidding. If you decide after being there to join his army and leave mine, I’ll understand. I’ll hate you, but I’ll understand. You CAN join his followers without having to leave me.

Don’t leave me.

I digress.

Sorry about lack of crappy pictures. I just wanted to write to write. I wanted to add some pictures, but then that would mean I’d have to go upstairs and find my camera. And in order to do that, I’d have to clean. And I REFUSE.

confessions

I confess…

Have you been on the Scary Mommy website? It’s funny. It even has a “confessional” where you can anonymously go to tell people why you are a terrible person, mother, friend or to rag on your in laws. Good stuff. I figure this blog is my confessional, but I’ve often wondered what I would say if *I* were anonymous. In fact, I’ve even thought of starting another blog just so I could be anonymous.

Don’t tell me you don’t want to make out with me.

I think it would be pretty much the same, but I’d swear A LOT more. How’s that? Sad, the life I lead. I have no secrets. I really don’t. I should start making crap up again, but quite honestly, I can’t make crap up that’s more interesting that the stuff that happens to me on a daily basis.

But I’ll tell you some of the stuff that isn’t readily available on this blog right now: 

 I confess that it’s been way longer than a day since my last shower and the yoga pants I’m wearing right now aren’t doing quite enough to cover the STANK. I can smell myself as I walk. It’s not good.

I wear yoga pants to school and pull my hair back like I’m going to work out. I haven’t worked out in months.

I confess that I went to bed at EIGHT last night just because I didn’t want to have to put my kids to bed. I was SURE I would wake back up after the kids went to sleep. I didn’t. But then I got all pissed off when I had to get up with Abby this morning (after 11 hours of sleep).

I confess that I DO check to see if people vote on the funny damn blog damn contest even though I say I don’t care. Because I don’t. Care. I don’t. It has nothing to do with my self esteem and my manic-depressive moods have NOTHING to do with where I am in the listing. I confess that I might be posting this just to HINT to you to vote. I confess that if someone else wrote this on their blog I’d think they were a total whore. The funny part about all of this? Is that I’ve had a bunch of “hits” from there…and what was the first post they came to? The last one about proxy baptisms and the Holocaust. HILARIOUS! RIGHT?!

I confess that I absolutely LOVE picking Abby’s boogs. She get’s the most fantastic ones. I don’t get boogers anymore. I grew out of them (or moved to places that are so humid that the insides of my nose aren’t dry for long enough to produce anything worth shoving my fat fingers up there to pick). But she’s been so sick lately that we’ve had to repeatedly wipe her nose…and it hurts her…so she’s on to me and won’t let me pick her nose. And she has the BEST boogs right now. It’s really terrible torture. Scumbag baby.

I confess that when Melissa conspired with Greta to bring me a treat yesterday I was so happy that I could have cried. But I didn’t. Because I was still pretty hateful from the hate mail I had received.  But meeting Greta was AWESOME. Plus, five minutes after meeting her I had suckered her into watching my kid. Booyah.

I confess that the motivation to MOST of what I do is to find people to watch my kids. It’s not that I don’t like children, I just like having a network of people who will babysit for me when I freak out.

AND…I confess… I’d love to hear YOUR confessions. I tell you all sorts of good crap. I know you jerks can comment on this blog- because you did when things went crazy below. Lets hear it.