advocacy · autism · Down syndrome


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.


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

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 Shines and Autism Wanders.

When we created the facebook page “Autism Shines” the goal was to counteract the information in the press about people with autism being dangerous. This was in the wake of the Sandy Hook shootings, as autism was being repeatedly blamed for the horrors of what happened that cold December day.  We wanted to show the world that they need not fear our autistic children, parents and friends.

Today, the admins at Autism Shines along with hundreds of bloggers and journalists are working to counteract the message we’ve been seeing replayed over and over again in the media following the disappearances and subsequent drownings of children with autism:  This is the parents fault.  The parents of autistic children should have known better. How could they have lost their child? How could they have been so negligent?

autism shines and autism wanders
This was right after we had lost Casey. He had wandered to where there was a river.

Losing a child is a pain no parent should have to feel, and it’s one I can’t even begin to comprehend. To make matters worse people who have no clue what it’s like to parent, much less parent a child with special needs, weigh in on the mistakes of parents whose lives they have no understanding of.  Can you imagine that? The grief of losing a child compounded with the guilt of being told it was your fault. And I’m sure that these parents feel that if they were there, this wouldn’t have happened. If they had not looked away for one minute, they’d still have their child. I’m sure the guilt they are feeling themselves is more than any of us could ever begin to imagine. They don’t need other people adding to that. They need to be told that it’s not their fault. This could have happened to any of us.

And it’s not their fault at all. People with special needs have a tendency to wander. It’s seen most in the autism community, but the Down syndrome community, the Alzheimer’s community and others have their share. I thought about writing about the time we lost Casey. There were too many scary instances to just pick one. Abby has just begun to really walk, and now she walks AWAY.  When I worked with people who have Alzheimer’s disease, we had to make sure all the doors were locked or the residents would wander away. One time, a gentleman did. The door wasn’t properly locked and the aid thought the nurse had him. Neither did. He was found down the street, sitting on a bench, having a stroke.

Being a parent of someone with significant special needs is tough. It means every guard you put up when your children are toddlers never fully comes down. You never stop worrying. You never get a real break.  Think about all of the times with your toddlers when you put them in front of the TV, sat them down with a book, or with a sibling so you could get a shower, go to the bathroom or even get online for a minute or two. Those two minutes are the same amount of time it took for Mickaela Lynch to wander away.  Did you ever wake up to find your child had awaken before you? This is what happened to the family of Owen Black. His body was found a half a mile away from his home.  Children with autism are not only prone to wander, but they are drawn to bodies of water.

When the unimaginable happens, we want answers. We want to believe that something like this could never happen to us. We want to believe that it’s the parents fault because that gives us some control when honestly, there is none. From everything I’ve seen, these parents were GREAT parents. They turned away for a moment, like any of us do, and tragedy happened.  These parents need compassion, they need love, they need our prayers and our support.  Please join with us today in an outpouring of love for the families of Mickaela Lynch, Owen Black and Drew Howell. Please read and share the posts of other bloggers here: Outpouring of Love.

To learn more about autism and running visit: National Autism Association. To help families like mine who have children who are prone to wandering, visit: AAWARE .

If you have children with autism or other disabilities who are prone to wandering,  make sure that your neighbors are aware of this along with the local police and fire departments. There is information on how to do that AAWARE.

And I’m begging you, if you are one of my readers that do not have a child with special needs, but know someone who does, offer respite. Offer a chance for a parent to take a break, to take a nap, anything. You’ll be loved forever for it.


The Stars.

Autism can be overwhelming in the most amazing ways. It’s not always terrible, it’s not always amazing and sometimes even, it’s both all at once. A night sky full of stars.

Last night Casey came home to find that Abby had accidentally erased the Angry Birds Star Wars ap off of our Ipad, losing all of information saved there. Every level he had passed had been lost along with every award he’d received. He freaked out and I didn’t blame him. Lance and I took turns trying to calm him, but really, when it gets to that point, we are only there to keep him safe. We don’t stop him from screaming and from letting the emotions out. We do try to help talk him back, to empathize with the loss and anger he was feeling, and to tell him we’re sorry. These storms never take a predictable path. I never know what will work to help him find peace. Yesterday it went from him hugging me tight and shaking as he cried to him screaming and biting the pillow and saying over and over again, “I just want to have control over all of the babies!”

Forty-five minutes into it,  Lance came in, a feverish Abby in his arms. As he went to lay her next to Casey in bed with us, I protested. “Not a good plan, Lance, he’s really upset with her.” Lance, without saying anything just knowingly smiled and put Abby down on the bed.  Abby, snotty and sick, gently cuddled up next to Casey, resting her head on his shoulder. Within a minute, the anger that had filled the room was gone, within five, my two beautiful children were asleep, cuddled close together and breathing in time.


This morning was the mess of madness that accompanies getting my kids out the door to the bus. I had made the mistake of getting in the shower before I got the kids out the door and it threw off my groove. The kids were screaming by the time I was out so I threw on some pajama bottoms and a top as fast as I could and got back to the business of getting my kids out the door.  As Casey ran out the door, Peyton yelled, “Where’s your backpack, dude?” I turned around to find the entire contents of Casey’s backpack on the floor…but no backpack. I had JUST packed that thing! I ran through the whole house and could not find it. Finally, I shoved his notebooks and folder into another backpack and sent him out the door.

Yeah, big mistake. Casey took to throwing the backpack up against trees and slamming it over and over on the ground in a fit of “This isn’t my backpack, this isn’t my routine, this isn’t how I had planned this day to go!” I yelled at him from the door to come back, that we’d fix it. Instead, he took off for the bus. I continued to yell as I ran out the door after him. I ran up the street in my pajamas; shoeless, braless, my hair in a half dried mess, begging him to come back. I ran past my neighbors, out with their dogs, or sitting in their cars at the bus stop and straight onto the bus. The sweet bus driver was doing his best to calm Casey down. As I walked up the stairs the first thing I noticed, and it’s an image I will never forget, is the scared look on the faces of the children as they watched Casey scream and yell. They were afraid of him.

Except one.

Our sweet little neighbor, who is in Casey’s class. Who GETS Casey and loves him for him. While the other kids stared in fear, she sat next to him and tried to calm him. My heart almost fell out of my chest with love for that little girl. Casey would not be calmed, so I got him off the bus, dragged him past the neighbors as they nodded at me in silent support, dragged him down the road and back into our home. I was relieved to find Abby waiting for us at the door, her pajamas half taken off and her hair a crusty snotty mess.

Usually, if Casey doesn’t get on the bus, his routine is too upset and he can’t make it through the school day. I still wanted to try, wanted to hope that his day would not be lost to this upset. I grabbed Casey a can of Diet Dr. Pepper to sip on (it calms him) while I got ready to take him to school.  I found his backpack on the floor of my bathroom (not sure why he took it up there…) and reloaded it.

We got to school and I could tell Casey was off. He was still battling the rage he had felt minutes before.  His breath was still a little shaky from the sobs. Abby in tow, I walked with him slowly up to his school, where his amazing principal met us. She’s out there every morning to greet the children. As we came up, she knew immediately things were not good. She knows that Casey has to ride the bus. I hugged Casey and said, “Are you going to have a great day today?” He did not answer. The principal did not miss a beat, she THREW her arms around Casey and said, “I am going to have THE BEST DAY because you’re here Casey! Let me walk you to class.” And with aAutism Stars sly smile, Casey took her hand and they walked away.

Autism can make the world seem so dark at times. It’s in those times, though, that the stars shine their brightest. The shining moments where anger melts away because of the sweetness of a 2 year old, where a friend is not afraid to be TRUE friend even when it’s hard, and where a principal takes the opportunity to change a boys day completely with one simple sentence.

They are the stars.


autism · SATIRE

Jenny McCarthy Causes Autism

Researchers at MTS University in Virginia believe they may have found the cause of autism: Jenny McCarthy. A new study shows a strong correlation between the rise in the “actresses” fame and the rise in the number of children with autism reported in the United States and Canada.Researchers in the field only recently stumbled across this information coincidentally at a seminar at which McCarthy, a well known autism expert, was the keynote speaker. While speaking at length about her career in porn and crappy movies, one researcher noted that her first appearance in playboy marked the beginning of the dramatic rise in children with autism (among other things). As her fan-base and popularity increased, so did the prevalence of autism.


Jenny Mccarthy Causes AutismThe same researchers were even startled to find that the correlation between her rise in popularity/rise in autism is much more strongly correlated than vaccines and autism. When asked for comment, McCarthy tweeted, “correlation doesn’t equal causation, jackass.”

To which we all exclaimed, “UH DUH!”