advocacy · autism · Down syndrome

Retarded.

There’s a sting I feel when that word is said. A jump in the blood in my veins. Because, for me, that word carries a weight. It reminds me of my children. It shows that even still, this world is not considerate of them, and what’s more, can be downright cruel.

Retarded.

The word used as slang bothers me. What’s worse for me though, is that it seems to not bother the people who use it. They throw it out in every day language as if it carried the same meaning as words like “goofball” and “sillypants.”  It’s not the same.

Down syndrome and Autism, Spread the Word to End the word

This is why. These are my kids. The word ‘retard’ in all of it’s forms is built upon a framework of the ugliest parts of disability.  It shows how, again and again, the disabled are the last to be treated like equals. Other derogatory terms are publicly decried from within the community that the word is offensive to and from without. Words like “faggot” and “nigger” are bleeped out on TV, as is completely necessary, but you’ll still see your favorite TV host using “retard” or “****tard” or something of the like without batting an eye.  And sure, they’ll hear it from the disability community, maybe even issue a one line apology on twitter, but that’s all.

The word “retarded” needs to go away. But I’m not crazy enough to say that it will. Like any word, no matter how ugly, people are still going to use it. What I want, at least for now, is for people who use it to understand the weight that it carries.  If you’re going to throw out that word in casual conversation, I want you and everyone around you to know that using it makes you look ugly, small, and completely socially unaware. Just the way anyone would if someone threw out any of the recognized socially disgusting words, a few I’ve mentioned above.  I want gasps to echo the same way as if you had used the n-word or others of the like, in place of ‘retard.’ Because THAT is the same.

The word retard, as I’ve said a million times before, uses my children and all that they endure, as a vehicle for your petty insult.  Because when you say that you’re acting retarded, you’re comparing yourself to my child. You’re saying that you’re stooping down to their level.  You can say you never saw it that way, that it’s just a word, but if you’re reading this, now you can’t. You now know better, so you can do better. You can be better. And the next time someone around you says something of the same, you can stand and gape at them in shock that they’d stoop so low as to devalue the lives of people who a great deal of the time cannot defend themselves in order to get a laugh.  And it can spread this way. You can help me by just understanding that this word carries weight, born by the people with the disabilities themselves, and to let your friends know that it’s not okay to use around you.   It’s the simplest things that can create the biggest change.

autism · Down syndrome

Falling apart.

“The only other time I’ve ever had anxiety like this was before we got Casey diagnosed.  We knew he hadn’t met his milestones, but I wrote it off to too many other things. My insides knew what my brain refused to deal with. It wasn’t until I went to therapy that I figured out the anxiety was my soul screaming at me to see what I wasn’t seeing. That Casey had autism. I just wish I could figure out what THIS anxiety was over…”

I said this to my therapist in DC, to Lance, to my mother and pretty much anyone else I had talked to about my anxiety with. I said those words and didn’t get it. I didn’t get it. I didn’t get it.

I missed something that was so plain to see. My anxiety was the same as it was before. Same feeling, different child..

We think Abby has autism.

When I wrote yesterday about not wanting to write before I knew I was right, this is what it’s been about. With Casey, we told people that we thought he had autism, and in a misguided attempt to give us hope, they told us that we were wrong. That he was fine. “Look! He’s looking at me in the eyes! He’s too affectionate. He’s not autistic.” I wanted to be wrong.  But it hurt to not be able to just say how I felt, wrong or right. Those attempts at hope shut down the conversation about how I was feeling.  I wish so much now that I had written what was going on through the evaluations and on diagnosis day. Instead, I put on a happy face and went along with it as if everything was okay. That I was okay. And I wasn’t.

And I’m not now. I’m not okay with her having autism. I’m pissed off about it, and at the same time there’s a sadness that seems to have seeped into my bones. I know well that the autistic adult advocates will say how terrible it is that I’m mad about autism, but dammit, tell me what good autism brings a child with Down syndrome? Tell me how to just accept it and be happy that she’s got yet another hurdle to deal with along with Down syndrome, hearing loss, immune system problems and shitty lungs? It doesn’t change who she is and the light she is in our life. It doesn’t change how I feel about her from the day I was still in clear denial to the next day where it hit me like a ton of bricks…

We were standing in the kitchen and I was trying to get Abby to say ‘hi’ to Heidi. “HIIII-DEEE” I said over and over again. A year earlier she had been saying it. And “ball” and “book” and “uP” and once, just once, she even said “mama.” That’s when I saw what my body had been trying to point out in the same way it had 8 years ago. Words that she had been saying she no longer says. She no longer imitates sounds. She’s regressed.

If it were just the regression, we could say it has something to do with her hearing (which doesn’t, in the end, make sense because she actually hears better now than she did a year ago because of the tubes). We have been saying that her sensory issues were because of the Down syndrome. And her social issues? She’s just shy. You know what? This all might well be the case. But added together it paints a pretty clear picture of autism.

As I say this, as I type the words out, I find myself wanting to just get in bed and stay there for a long time. I want to pull the covers over me, as if they are a shield against the reality that I am too damn tired to take right now.

I’m not allowing comments on this post. I’m not exactly sure why. I don’t want to even feel the need to put on a brave face right now and say that it’s going to be all right and I don’t want to have to agree with anyone when they tell me that this isn’t the end of the world. Because right now, in this moment, I’m really really sad. Being sad is not wrong. I’m not going to be sad forever, but for right now, I’m going to let myself fall apart a little.  I’ve gotten pretty good at putting myself back together, I know where the pieces go.

autism · Down syndrome

10 things I wish I would have done as a special needs parent from the beginning.

WheParenting children with special needsn Casey was first diagnosed with autism, I set out to be the perfect special needs mom. I worked really hard to know all of the information, read all of the books, all while trying to do the regular mom stuff- cleaning, laundry, meals, etc. I burnt out hard. I flung myself into a depression that wasn’t easy to dig out of. But when I finally got out of it what did I do? The same thing. This cycle repeated itself until I found myself in a therapist’s office dealing with chronic pain and debilitating anxiety and depression. I had to change.  Looking back, I see now what I was doing that wasn’t working, and found things that help.  I was fortunate to understand a lot of these things by the time Abby was born, but there’s still a million more things I could do to save my sanity. These are the first ten that came to me.

1.  Learn how to say ‘no’.

There are going to be people that suck the life out of you. You have enough on your plate, if these aren’t reciprocal friendships or endeavors, say ‘no’ whenever you genuinely don’t want to do something or simply can’t.

2.  Cut out all of the fluff.

Before Casey was diagnosed, I was seriously concerned about not having enough cute nicknacks in my house. It seems SO crazy to me now.  This has been a lesson to me on two fronts: 1. Cut out the literal fluff- anything ‘fluffy’ (nicknacks)  in your house that isn’t necessary. Or, at least, don’t buy any more. It’s one more thing to clean. It’s one more thing to get broken.  I have a veritable graveyard of Willowtree Angels that I HAD to have. Unless it’s something you do as a hobby, (see below) this sort of thing just clutters up your space and your brain. Which leads me to the second lesson: Cut out the figurative fluff. We live in a Pinterest world where there’s always some way to take an ordinary event and make it extra stressful. Children’s birthday parties are less party now and more extravagant events. Your kid isn’t going to remember the fluff, at least mine don’t. They will see pictures of them blowing out candles on ANY cake- store bought or one with baked in tears.

3. You’ll lose friends. Good riddance.

Someone actually did tell me that I’d lose friends after Casey was diagnosed. I didn’t believe her. I wish I had. And I wish I could have employed the second part of this point too. Disability is a fantastic friendship sifter. You’ll find out who your true friends are because they’ll stick around. They won’t expect you to be fun all of the time. They’ll listen. They’ll come over and sit with your kids so you can get a nap. Those who don’t stick around you are better off without. It sucks to learn that friendships aren’t what you thought they were; but it’s sure nice to know before you devote any of your precious time to someone who isn’t worth it.

4.  Don’t overload on disability-specific information.

We are are fortunate to live in a time where information is readily available at our fingertips. After each of my kids were diagnosed, I binged on autism and Down syndrome information. I only read books, blogs, websites and forums about the two. The problem with this is that a lot of the information out there tends to point out the negative aspects of disability. There are things you can’t learn from books- you have to live it.  I finally put down my Down syndrome books when Abby was a couple of months old and just enjoyed my baby.  I’m not saying to not do your homework, just make sure it’s not ALL your doing. Read funny stuff. Read stupid crap. Mix it up from time to time.

5. Listen to those who have gone before you.

Like I said, there is only so much you can learn from books. Life experience is the best teacher. Parents of older children or adults with disabilities know more than you do. They just do. Will they have done things or have the same perspective on your kids as you do? Maybe not. Listen regardless. I’ve learned more from my friends within the special needs community than I have from any book.

6. Don’t stop being yourself.

4bdf329af59c11e2be0322000a9f38f1_7This is a lesson for any parent, but especially for parents with children with special needs. Don’t try to fit yourself into the mold of what you think a special need parent should be. I used to think that I had to be brave and strong and happy all of the time. I had to convey to the world how supremely grateful I was for the challenges we had. Bullcrap. That is a mold I cannot and will not force myself into any longer.   I like my music loud, I swear, I complain and I make a thousand mistakes a day.  It’s not that I’ve stopped trying to be better, no, I just want to be a better version of ME.

7. Find a way to relieve stress.

I should say a “healthy” way to relieve stress. I’ve heard that heroin is a great stress reliever…but you know, it’s heroin.  My therapist back when I was having chronic pain forced me to find something that wasn’t autism, parenting, or housekeeping related to do that I enjoyed. He even went as far as forcing me to show him what I had learned to do. I craft. I make crappy jewelry and cards. I love it though. I have friends that exercise, some that knit and others that mercilessly mock me on Facebook. All of these things give their brains a break from the daily battles and give them something to do that is rewarding to them.

8. Take any break you can get.

I used to put my kids to bed and then think I had to get to work on my house, blog, reading, etc. I don’t do that anymore unless I want to. I use the time to relax, catch up with friends, or do something fun. If you find yourself child free, remind yourself to use that time to recharge. You might have to get a babysitter to have child free time. DO IT. I get how hard it is to find a good babysitter. I have an autistic son and a daughter who is medically complicated. It’s  necessary.  It’s expensive. It’s necessary. Find a way in your budget to have a night free at least every two weeks. If it means giving up eating out, data plans, etc, DO IT. It’s soooo important to be able to get a break. It’s vital to your relationship with your spouse or significant other, and it’s vital to your mental health. Even if you don’t go on a planned date, get a freaking babysitter so you can nap. I once paid a babysitter to watch my four kids so I could sleep in my car. I kid you not.

9. Medicate

You’re going to deal with more stress than the average person. If you’ve tried everything else and just can’t keep your head above water, get some help. You might just need someone to talk to. Do it. I’ve found that just talking to someone isn’t enough. I needed help to defray the daily emotional cost of having two kids with disabilities. On my best days, I still need help. Find a doctor that will work with you to find the best medication. I’ve just spent the last six months trying to find a good medicine to help with my new fun anxiety problems.  I’ve finally found one that gets me back to normal, and I use therapy to help me stay there. There is nothing wrong with needing medicine or therapy. Nothing.

10.  Enjoy it.

cd1e5beeed9811e2b65722000a9e00be_7You are your kids’ parent first. Advocate, teacher, and therapist are important roles, but they aren’t what you ARE. Enjoy it. As I’ve typed this out, Abby crawled on the edge of the couch by me and then dove head first into my lap. She giggled as she wriggled herself around so her feet were on my face. I ADORE her. I love my time with her when we’re not doing anything else but existing in our roles as mother and daughter. I love having Casey wake me up as he tries to stealthily crawl into my room to sneak into the spot between me and his dad. I love what all of my kids teach me, and though I complain a lot about the minutia of motherhood, I absolutely love being my kids’ mother.

autism · Down syndrome

Person First Language: I can’t win.

Yet another person in the Down syndrome community (I’m sorry, a community with people who have Down syndrome in it) has sent me an email saying that it’s wrong for me to say that Casey is “autistic” instead of saying that he has autism. Anyone outside the special needs community reading that is scratching their heads and saying, “I really don’t get the difference.” Anyone within usually has an opinion about this. Don’t get me wrong- I’ve actually had people from within the Autism community tell me that it’s wrong that I ever say that Casey HAS autism instead of “is autistic.”

I can’t win no matter what I write! Maybe I’ll just write it out both ways so that I can make sure to offend EVERYONE:

My autistic son Casey who has autism doesn’t give a damn what you call him. He just wants to tell you about the Titanic.

For me personally, I’m so bored of “person-first language” I could tear all of my hair out, light it on fire, and watch it burn at the feet of a horrified special needs community.  It bothers me in particular when people tell ME how to call MY KIDS (Although, Heidi was not wrong when she said it’s probably not a good thing to call them assholes).  It bothers me that in the Down syndrome community where we plead for acceptance and love of our kids who are ‘chromosomally enhanced’ that we’d actually make it a point to separate the child from the diagnosis. I firmly believe that doing so doesn’t show that the kid is person first. It shows that we are trying to distance them from the way they were born, who they are; as if their diagnosis is something to be ashamed of. Their autism and Down syndrome are not something that they will ever be without. It’s not something they will be cured of  outgrow.  I want them to embrace it.  Does it lump them together with their respective communities of people with their same diagnosis? It sure does. That doesn’t bother me either.

No amount of sentence jumbling is going to make people not notice Abby’s Down syndrome when they first see her. That’s okay with me. I’m not ashamed of her disability. Forcing people to change the way they address her isn’t going to make them think, “Oh, noooooow I see the little girl and not her Down syndrome, I’m going to treat her better!” It’s going to make them think, “Wow, the mother of that Down’s girl is a sanctimonious jerk.” Want to know how I know that? Because I’ve been told it! I used to force people to use person-first when they spoke about Abby. I fully embraced what the community told me to do. I was a sanctimonious jerk about it and I was wrong.

My other beef with it is that it’s linguistically cumbersome. And while I won’t be saying Abby IS Down syndrome because that doesn’t work linguistically either, I’m not going to bend over backwards to use person-first language all of the time. Sometimes “autism” works better in a sentence than “autistic.” When that’s the case, I’ll use it that way.

I don’t care how you address your kids. If you use person first or not, fine. Just don’t tell me what to call my kids.

(unless, as was mentioned, you see me calling them assholes.)

 

Abby · advocacy · Down syndrome

My Message Was Lost With My Words

Whether you believe it or not, I choose my words carefully on this blog. I wrote two posts about abortion and Down syndrome. The first post I wrote on in two years ago was my first post to ever go ‘viral’. It was read and shared by people who believed exactly as I do. I patted myself on the back and thought that I was really getting the message about choosing life with Down syndrome out there.  That my words were making a difference.

A funny thing began to happen. I watched as people would land on this blog using search terms like “Should I abort Downs syndrome baby?” and “Prenatal Down syndrome abortion.” A couple of times, I watched where they went on my blog. They came, they read for a minute or two, they left and never came back.  They read the words and were turned away from the real message. I know from speaking to one person who came to me worried about keeping her pregnancy with a baby with Down syndrome that my words in those posts were harsh and shut down the conversation. They didn’t allow space for someone who really wanted to see what life is like for our family and to poke around to know the reality.

My message was lost in my words.

I find myself getting offended at the very thought that someone wouldn’t want a child like Abby, and that leads me to say things in ways that shut down conversations. It makes me an asshole, not an advocate. At the end of the day, my views on it really won’t make as much difference, I think, as just being open and honest about our lives. People are going to make whatever choice they are going to make, and with anything, it’s not my place to condemn them. What I want is for people to see how good life really is for Abby, even if it’s not always easy.  I want people to STAY on my blog to see that if someone like me can handle the things on my plate (albeit poorly at times…lots of times) that they can, too.

I want people to know the facts, both good and otherwise, about life with Down syndrome. Research shows that doctors aren’t trained in delivering such a message to expectant mothers, and a great deal of the time, they give information that is outdated or downright wrong. If you want to learn the facts about Down syndrome, I HIGHLY suggest you go to this site and order or download a copy of Understanding A Down Syndrome Diagnosis. It’s free.

If you’re here because you’ve been given the news that the baby you carry has an extra chromosome and need someone to talk to, feel free to contact me. I beg you to read on. To see the good, to know what to expect of the hard, and to know that you’re not alone.

Abby · Down syndrome

Happy Hearing Day, Abby.

Abby squirmed on my lap as I tried to hold her still as the doctor and her assistant worked. “Shhh, shhhhhh…almost done,” I whispered. And for the first time…ever…in Abby’s life she heard me.

My daughter heard me whisper to her. She turned. She listened. She calmed.

Down syndrome, hearing loss, hearing aids, child, down syndrome girl

I was heartbroken when we learned that Abby’s hearing loss was permanent.  The realization that she had never heard me whisper tore through me. All of the nights I had spent walking the halls as she struggled against sickness, whispering in her ear, singing softly, and shhhhshing her never made it past her tiny ear canals.  With every whispered “I love you” as I put her to bed, she saw my mouth move, but never heard the words.

I’ll never forget that simple moment in the doctor’s office as they monkeyed with her new hearing aids. The first time she turned towards me when I whispered in her ear. I won’t forget the first time her eyes lit up as she walked around and heard her own footsteps for the first time. She turns towards the sound of chirping birds and is overwhelmed by the loudness of her three brothers.  She hears me now when I call her from across the room. We’ve turned down the TV to a level that doesn’t fill me full of rage.

It’s beautiful. And soon, I’m sure, the sounds that were missing for her to make sense of spoken language will come and I will have that rush of delight when I finally get to hear her call me ‘mom.’

If my life has shown me anything, it’s that the times that hurt, the times that were so low, make the great times SO MUCH greater. Waiting makes the rewards that much more sweet.  Abby’s taught me to slow down a little bit, and to revel in every single thing- even the sound of my own footsteps.

Happy hearing, Abby.

Abby in her hearing aids

 

Down syndrome

MYTH: Children With Down Syndrome Are Always Happy.

Abby doesn’t say much, but if she could I’m sure it would go like this. “No no no no. No. OH HELL NO. NO no no no no.  Give me a hug. A HUG RIGHT NOW! No. NO. HOW DARE YOU TOUCH ME?! No. No. Food. MORE FOOD. I threw my food on the ground. Clean it. WHY ARE YOU CLEANING THAT? I was saving it. No. No. Wanna go outside?”

You know, regular toddler stuff.

She is, in fact, a toddler. A spoiled diva toddler who has gotten away with too much because she’s too freaking adorable. But she’s also got her own stubborn personality, her own ‘free will’ that she’s learning to harness as if it were some super power. She’s frighteningly good at it, too. She yells. She throws fits. She wants HER way and she wants it RIGHT THIS SECOND.

She’s a toddler.
Down Syndrome MythsShe’s also a toddler with Down syndrome, so it’s a tricky relationship. She knows what she wants, but doesn’t quite have the ability to express those wants all of the time. She throws fits and after a while, so do I. It’s hard, and what’s more, I get crap for saying that it’s hard. I feel like people want to think that because she has Down syndrome she’s supposed to fit into the Down syndrome stereotype of being happy placid all of the time. She’s not. She’s her own person with her own wants, likes, and PERSONALITY.

Stereotypes do exist for a reason. It is generally seen that people with Down syndrome are pretty happy. Abby is pretty happy. She’s pretty laid back too. But not anymore than Carter was at this age. My issue with this stereotype, even though it’s seen as a positive one, is that it tries to put her in a box that she doesn’t fit into. That no person I’ve ever met with Down syndrome fits into. It takes from her own individuality as a person and defines her by her diagnosis.

My friend Deanna wrote an amazing article on how the Down syndrome community has overshot in their efforts to prove that Down syndrome isn’t as horrible as some make it out to be. Read it. Right now even. I’ll wait. Listen, I’m all for showing people that Down syndrome isn’t a death sentence. That it’s not what doctors say it is when they counsel someone whose baby just got diagnosed with it. There’s a lot of misinformation about the reality of Down syndrome. I hope that this blog helps to negate some of that information. But at some point, our zealous need to prove to the world that people with Down syndrome deserve a chance at life, we’ve lost some of our grip on reality.  In our characterization of all people with Down syndrome being angels, we’ve done what so many in the community hate- we’ve defined our children by their diagnosis, and not as the individuals they are:

Cute, sweet, but sometimes totally bratty, individuals.

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