Tag: down syndrome

advocacy · autism · Down syndrome

Retarded.

Lexi Magnusson12 Comments

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.

Uncategorized

“Celebutard” lipstick- Hey Sephora…

Lexi Magnusson144 Comments

Hey Sephora,

Up until a year or so ago, you’d never find me at a department store buying makeup. I was a proud drugstore make up wearer. I also had really bad skin that was only getting worse. When I switched to Sephora products, not only did my face clear up, but my make up stayed in place and, on the days I wear makeup, I look like I could almost pass for a human. It’s good stuff.

I like the makeup, which is why I’m sad to say that I will not be shopping at your stores anymore.  You got Kat Von D. to create an edgy line of products for you. I get it. She’s a beautiful celebrity that doesn’t look like all the rest. It’s appealing. However, the name of one of your lipsticks goes beyond edgy- it’s distasteful and hurtful.

Celebutard

Celebutard lipstick, an UGLY name for a 'beauty' product.
screen shot from sephora.com

Who were you aiming this at? From what I understand, the name pokes fun at “unintelligent celebrities” by mashing up “celebrity” and “retard.”  It’s offensive, and not just to celebrities whose intelligence you are putting into question by using a term that once was used to describe people with intellectual disabilities.

It’s those people and the people who love them who are hurt the worst.  You’re picking on the most vulnerable in our society by using a derogatory term that historically has been used in gross ways to make fun of them. Would you make products that combine the word celebrity with such ugly terms as ‘faggot’ or ‘nigger’? Did your skin just crawl up your arms a little bit when I used those terms? It should. They are disgusting terms and I hated even typing them out. That disgust you feel when you see those words used is the same disgust I feel when I see someone flippantly using the word “retard.” You’ve used one of the ugliest terms in the English language to describe a beauty product. 

This is my daughter. Using the word “retard” stabs at the disability part of my daughter- her intellectual capabilities- only. It’s a word that reduces who she is to what she can’t do. It’s hateful.  It’s a word far too ugly for this beautiful face.

Abby's so pretty

 I’m begging you, change the name of the lipstick. It’s just lipstick. It’s not worth causing people pain. Sure, maybe it’s driving people to your site, but I assure you, most of them are just shaking their heads in disgust.  If you’re using the name of this product for publicity, well, there’s a special place in hell…

An apology would be appropriate as well. Show people like me that you’re not really as out of tune as it seems.

Your products are made to enhance beauty. Why would you name one of them something so ugly?

 

autism · Down syndrome

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

Lexi Magnusson41 Comments

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.

Down syndrome · Uncategorized

How to Survive A Sleep Study.

Lexi Magnusson7 Comments

How to survive a sleep study with your toddler

We just survived our second sleep study. When we got back into the room, I kicked myself for not remember all of the things I SWORE I would remember at the last sleep study. So, in an effort to save myself some aggravation for sleep study number 3,  and to share my wealth of knowledge for all of you,  I’ve written a useful guide for making it through.

1. Wear proper attire.

Your child will have electrodes placed on their legs, abdomen and head. Make sure they’re wearing something that makes these electrodes easily accessible. For girls, a nightgown is probably your best bed. Boys, shorts and a t-shirt. Footed sleepers are a mistake. One that I’ve now made twice.

Parents should wear something they can sleep in comfortably that won’t creep the tech out. Bring a couple of pairs of socks. Believe me. I’ve spent much time in a hospital. Having a few extras around are a necessity. Also wear a sweater. You never know if your crappy chair/bed is going to be situated right under the ac that no one can seem to figure out how to turn down.

2.   Be healthySurvive Sleep Study

If you think your child is the least bit sick, cancel the sleep study. Cancel it fast. There’s nothing worse than having a sick kid that wont sleep AT a sleep study.  Abby got a fever at her first one and would sweat the electrodes off.

3. Bring your own bedding

This is pretty much a good idea for any hospital stay. Hospital bedding is the worst. THE WORST. It’s like they specifically design it to tangle. The sheets aren’t so much as sheets as large skin exfoliators. I brought my own blanket for me and by 11pm, I had to give it to Abby because she refused to keep the hospital covers on herself. The pillows aren’t pillows, either. They’re sadness in a pillowcase.  And I know you’re thinking, “I’ll look like a huge idiot carrying all of my bedding through a hospital.” You’re right. You totally will. But you’ll thank me.

4. Bring your child’s favorite ANYTHING

This time I brought the Ipad, bubbles, her bear, her doll, crayons, paper, etc. Along with that her sippy had milk in it (we usually give her water before bed) and I had brought a bunch of her favorite treats with me. Turns out all I needed was “Finding Nemo” on the hospital TV.  But you never know. Sleep Study with Electrodes On

5.  Have the tech wait until your child is GOOD AND ASLEEP before they start putting the electrodes on.

We’ve done it both ways. Waiting until Abby had been asleep for 20 minutes and then putting them on was the best idea. She slept through almost all of it.

6.  Try to sleep yourself. Or don’t. I don’t really care.

I brought all sorts of books and games and stuff to do on my “night off” at the hospital. I ended up playing on my phone. Then I went to sleep. You won’t sleep well and you won’t sleep for long, even if your kid is on their best behavior. Make sure you schedule your night away when you’ll be able to sleep the next day.

For those of you who have done sleep studies with your kids before, do you have any helpful tips to add?