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


Share it. Pin it. Use it. Report back.

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.

autism · Down syndrome

How you handle a diagnosis.

I wrote Abby’s birth story in the glow of just becoming a mother to my only daughter. Those first few months were tough, but they were great because of the outpouring of support we received from our friends and neighbors, along with the virtual community.

Everything I wrote in that post I felt. I don’t want to go back and change anything. We did take it…well… but that’s not to say that we did it right. Because the honest truth of getting ANY diagnosis with your child is that there is no right way to handle it. What matters is that you let yourself feel what needs to be felt, and then, at your pace, you begin to heal and move forward.

I am not against prenatal testing (I am against the most common use for it, though) . I think it’s very important to know what you’re dealing with. I’ve heard people say, “We don’t get tested because it wouldn’t change anything anyways.” I understand that, but testing does change things. If your baby comes back with a diagnosis, you will receive a higher level of care. This is SO important. Had Abby not been induced the morning she was born (my labor had stopped, they were going to send me home, but I had already had an epidural put in so they went ahead with it) we could have very well lost her. By that time, the placenta had not only stopped functioning, it had crumbled.

Prenatal testing for parents who don’t consider abortion is still a double edged sword. With a prenatal diagnosis, you’re left with all of the worry and none of the joy.  And then you have the rest of your pregnancy just to sit with the news. That’s ROUGH.

And I’m not saying that those who have a diagnosis at delivery don’t have the right to be upset about it either.  Or a diagnosis of anything else later in your child’s life. My son, Casey, was diagnosed with autism at 18 months. That was a terrible time for me. It took me a long time to process that I had a special needs child and that I was a special needs parent. I grieved HARD over the loss of the life I thought I had wanted. Everything changes when your child gets diagnosed with a life changing condition. And it’s okay to go through any emotions you need to with that.

When Abby was born, I already was a Special Needs parent. My life had already been radically shifted to a new normal.  I had only positive experiences with people with Down syndrome, many of which were in the preschool programs with Casey.  I was okay with it at birth, to be quite honest with you, because I was SO worried she’d have autism. In the special ed programs Casey had been in I had been, quite honestly, jealous of the parents of children with Down syndrome. Their kids seemed so much easier in comparison.

Life is teaching me new lessons. Abby is easier than Casey, medical issues included. But it’s comparing apples and oranges. I would be lying if I didn’t tell you that there were many times I just wished she was normal. That our life was normal. There are times when a certain kind of sadness comes creeping in. When it does, it’s okay.

Emotions are okay. It’s okay to feel a little pissed off at the hand you’ve been dealt. You didn’t sign up for this and you’re not a bad person or a bad parent for saying that. It is what it is. If you’re really struggling, now or in the future, get help. Get good meds. Do whatever you have to. The best thing you can do for your child is to be healthy and as close to sane as you can be.

It’s going to be hard. There will be days and even weeks without sleep. There will be small heartbreaks and large trials. But it’s going to be so good. I promise you that. In fact, in a year, come back and tell me how right I was. I love being right. 

(My husband took this picture last night. Abby held on to me so tight after I had a terrible day and pretty crummy week. She makes things better)

autism · Down syndrome

A letter to myself.


Dear Lexi 2004,
Hi. Jeez. What can I tell you about the road ahead? Hold on? It gets better? 
You’re going to have four kids.  Two of those kids will have special needs. You will experience a sadness that you’ve tasted a little of when you lost your father. But different. It will linger, in and out of your life, like a ghost. But not the one you wish for. Because of that sadness, every single joy you have will be so much richer than it would have otherwise been. You’ll find yourself broken and strong all at the same time.
They’ll tell you it will be like vacationing in Holland instead of France. They’re full of shit. This is not a vacation. This is real life. 
You’ll change. Everything will change. You’ll love your husband more than you’ve ever thought possible. And you’ll need him so much that it scares you. At the same time you’ll find strength inside yourself that you didn’t know you were capable of. Which is good, because you’ll endure far more than you’ll ever expect.
  
You’ll lose friends. Those are the ones that weren’t deserving of you and your family in the first place. You’ll know this when it happens, but it will still hurt like hell. 
You’ll make friends. Oh! The friends you’ll make! I’m so excited for you and the friends that you are about to find! A lot of them are online, and that’s okay. They’ll be parents of children with special needs, too, and they’ll  be your very survival.  You’ll have Real Life Friends, too, and they’ll be the very best people this world has to offer. That’s the thing about disability that you won’t see on the outset- it sifts the Not So Great Friends from the REALLY Great Friends. 
You’ll gain a new perspective on life. On happiness. On success. You’ll gain an awareness of and a deep appreciation for people who are different. People who, though maybe not all born with a disability, are born different from the rest of everyone else.  You will become their friend and their advocate. In turn, they will do the same for you.  The bubble you once lived in will burst, and you’ll be glad it did.  You’ll learn that differences are what give color to this world.
It’s going to be hard. But it’s going to be so good. It won’t get easier as time goes by, but it will get better.  You’ll be able to handle more, and a lot of that is a process of choosing to weed out the crap that doesn’t matter.  So much of what you think matters most right now will make you laugh in the years to come. 
Ask for help. Stop giving pieces of yourself you don’t have to give. You can say ‘no’ to people who wouldn’t say ‘yes’ to you if the situation was reversed.  See a therapist. Find good medication. Sleep when possible.  
You will have so much joy. Your life will be happy and full of laughter. So much laughter. It will be hard. It will suck at times. But you will be given a life less ordinary, forced down the road less traveled. And you will be grateful for the chance. 
Love,
Lexi 2012.
autism · Down syndrome

Hey Palin, Where Ya At?

You know what? I wrote my Open Letter To Ann Coulter in a fit of rage. I knew that this blog isn’t ever going to be on her radar- that she’d never read it. And if by some chance she did, she’s laugh at it. She’s a horrible human being. I wrote it for me than anything else. I’m already bored of being angry, so I’m hoping that someone else will be, for me.

I  wish that there was some way to get to her. I wish there was…you know…someone who worked AT Fox News who could…I don’t know…maybe tell Fox News that this sort of hate speech is not acceptable and that that woman should never be put on TV again. Wouldn’t it be great if there was someone who had a child with Down syndrome- someone who’s gone after other people for using the R-Word?

Hey Palin, Where Ya At?

sarah and trigg palin
http://www.faithandfamilylive.com/

Sarah Palin went all sorts of crazy when Rahm Emanuel used the word- why wouldn’t she now?! Hate speech is hate speech no matter who says it, right?

Well, apparantly not. I highly doubt that Palin will step up and say something to Fox or Ann Coulter about this. Why so hopeless? Because when Rush Limbaugh used the term, she said, “They are kooks, so I agree with Rush Limbaugh,” she said, when read a quote of Limbaugh calling liberal groups “retards.” “Rush Limbaugh was using satire … . I didn’t hear Rush Limbaugh calling a group of people whom he did not agree with ‘f-ing retards,’ and we did know that Rahm Emanuel, as has been reported, did say that. There is a big difference there.”

I feel like if she’s not going to say something to Rush, she won’t say anything to Coulter. And if she, a woman who has a child with Down syndrome herself, a very colleague of Coulter’s at the very same network, won’t stand up and make her voice heard, I don’t know how we can feel like we have a pittbull in this fight. People will continue to watch Coulter on Fox News,  and many, many, will ascribe to the things she says and the way she says them. And we’ll all take one collective step back in the fight for our children, our siblings and our friends with disabilities.

So what am I asking? I’m asking for Palin to do what is right here. To prove me wrong. To be the pittbull type she says she is and proclaim loudly that this is not okay- from EITHER party. Words like this need to be erased from the vernacular, and for those who still choose to exerecise their right to free speech in this way, there are consequences.

She said the difference between a hockey mom and a pittbull was lipstick. I wonder what she thinks the difference between a Special Needs Mom and a pittbull is?
 
_________________________________________________________________________________
If you’ve written a post to Ann Coulter, make sure you use #whoyouhurt when you share the link on twitter. Also, link up your post at Yeah…Good Times.

autism · Down syndrome

My Open Letter To Ann Coulter

I wanted to write you a well thought out letter about how the words we choose define us. I can’t do that right now, Ann. Because yet again, the word you have chosen to use to gain yourself some more momentary publicity have mad me so angry that I can’t hear myself think over the sound of the blood pulsing in my ears.

ann coultor tweet

Everyone knows that you live for this sort of crap. You LOVE saying the worst things you can think of because you live for attention, even if it’s mobs with pitchforks. You are so deluded to the fact that most of America thinks you’re probably more dragon than human. It makes me fearful for my children that ANYONE in our society listens to you.  At this point, this “tweet” has been retweeted 2,000 or so times. 2,000 people thought it was okay to share something so hideous with their followers, too.

When you use the word “Retard” you are KNOWINGLY (and I know you know very well what you are doing because you’ve said it before, and you’ve had the backlash before) offending a group of people that has done nothing to you. A group of people, most of whom, cannont speak for themselves.  You are the true definition of a bully. You pick on people you think are less than you because it makes you feel better about yourself. What a sad person you must truly be.

This is my son Casey and my daughter Abby.  Casey has autism.  Abby has Down syndrome.

You use a word that keeps me up at night. A word that has been used to describe each of my beautiful children. A word that holds more hurt in it than any other word you could have chosen. And, let’s be honest here, you wanted to call him the ‘N’ word, you just couldn’t…it’s where we’re hoping to get with the R word. It’s hateful. It’s degrading. It’s wrong. And anyone who uses it deserves much worse than to be boycotted, but I can’t advocate for violence (outloud).

Take it back, Ann. Say you were wrong. Stop being a bully and try for once to be a human being.  These are real people you are hurting.

Sincerely,

Lexi

And for those of you who agree with me, I hope that you’ll stop watching television shows and networks that allow her on. She’s not worth her space in this world, even though she’s just a shade above skeleton, let alone any time spent in our homes. Send her a message.

Please share

autism

Oh Jeez. Now I’m a mess.

Have you seen this? I’m a big ball of tears. I love where the dad says,

“We were afraid she’d never speak, never dreaming she’d be able to sing or even understand…as the education continues…I’ve taken off the idea that there’s some limit on her because she continually proves that that’s not true.”

It’s exactly how I feel about Casey. There are no limits. Enjoy.

Please share…

autism · Down syndrome

She’s beautiful.

There were times after Abby was born where I was sad that I didn’t get to see what I looked like in a girl. What my features looked like. I saw Abby’s features- her almond eyes- etc, as Down syndrome, not as my own. This is a hard thing to admit. People would say, “She has your nose!” and I would think, “nah, she has no bridge- that’s not me- that’s the Down syndrome.”
 
As time moved on, I began to see it. I began to see my nose, my chin, my expressions, in my daughter. I also see A LOT of Magnusson. She’s got her dad’s cheeks. She looks a little like her beautiful Aunt, Leslie. That makes me SO happy. Before Abby was born Lance and I would talk about what we thought she’d look like and we both hoped she’d look like Leslie. 
I selfishly worried that she wouldn’t be pretty. That the world would only see her as her diagnosis, and not the girl she is. 
I was wrong. The world sees her as both Down syndrome and my beautiful Abby. She’s pretty on her own, but these two things added together make her beautiful.

Join the  Down Syndrome Awareness Blog Hop!
…as always…feel free to share.

autism

PLOF.

PLOF: Present Levels of Functioning.

Another acronym. IEP day. IEP: Individualized Education Plan. Basically, a legal document that ensures your child to a FAPE in the LRE (Free and Appropriate Education in the Least Restrictive Environment). All apart of IDEA- or the Individuals with Education Act. It’s attended by the SLP (speech-language pathologist) the teachers, the principal, the LEA (Local Education Agency, or person from the district) the OT (Occupational Therapist), the PT (Physical therapist, if you have one) as well as the school counselor and…have I lost you?

The hardest part of all of it. Of all the rangling for services, the fighting over needs, the stress of just sitting through yet another meeting, is the PLOF.

Basically, they sit you down and tell you everything your child sucks at. It’s a reality check of the worst kind. They don’t mean to be hurtful, they are, in fact, speaking with the data they have compiled. It’s all too truthful.Too dry. There’s something about having it in hard copy. Something about everyone nodding in agreement when they say my son can’t do x, y and z. 

They go over the PLOF in every area. I nod my head as they tell me about math, executive functioning, writing, reading, etc.

I sit and try not to flinch as they tell me that Casey is in the bottom on 1% on comprehension. It hurts, almost a physical pain. My soul feels like it’s being scraped from the inside. Basically, he speaks great. He says LOTS of things. His understanding of what is said? Minimal. Nothing is surprising, though, given his diagnosis.

We spent hours talking about everything that his autism takes from him. There was no mention of what it gives.

I guess that’s what bothers me. The PLOF Autism Reality Check (ARC? Damn. That one’s been taken). I spend my days working to see Casey as CASEY.  It took me YEARS, and it’s new really, to see his autism as a part of who he is, both bad and GOOD, both taking and giving. It’s taken me all of this time to appreciate the beauties of autism.

I hate being sent back to where I was even six months ago. I’ve worked hard to understand and appreciate the beauty of my son- diagnoses included. Yet, I left that meeting deflated. Sad.

His autism GIVES. It gives as much as it takes.

I go now to write the real present levels of functioning for my autistic son. Stay tuned.