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

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.


Abby · Down syndrome

Fifteen minutes of fear.

Minute one.

Sleeping, her coughing subsided as her body began to tremble. Small shakes turned quickly to an uneven but terrifying shiver. Her breath caught as her eyes blinked open. I could see the shock in her eyes. Her body was betraying her.  Her body was cool. No fever. Lance scooped her up and stripped off her clothes as I ran into the bathroom to run a bath.


Her breathing was labored and erratic. Her body shivered in kind. Seeing that she was having trouble sitting on her own, I pulled off my clothes and got in the tub with her. I held her against me and breathed with her. The water was hot, but her shivering wouldn’t quit.


The water covered her now as I rocked her in my arms. Her skin was mottled, her hands a patchy purple. Breathe…slow…breathe….slow….shhhhh….slow, I willed her to calm. I willed myself to calm. Lance ran in with more albuterol and ibuprofen to add to her tylenol and steroids.

Breathe. Slow. Shhhhhhhh.


Fever. Fever. She’s hot. Too fast. This was happening too fast. Breathe. Her coloring worsened, the lines of the mottling of her skin grew purple. I moved her from my chest and laid her against the back of the tub, hoping that stretching her out a little would help her breathing to slow. It didn’t work. “Something is wrong.”  Lance came in with a towel, swaddled her gently and then held her tight as she continued to shiver.


Soaking wet, I ran without a towel into my closet to find clothes. We had to get her to a hospital.  Do we call rescue? Would they be fast enough? Breathe. Calm down. Breathe.  Her shivering subsided but her breathing had yet to respond to the medication. Clothes. Where the hell were my t-shirts? Why do I have ONLY pajama pants but no t-shirts? Focus. FOCUS. Think.


I grabbed my hospital bag that I had emptied just last week in a fit of arrogance. Things had been going so well. Six months since our last ambulance ride! Focus. Focus. Why won’t my ADHD quiet just for a minute? Focus. Clothes. Socks. Hospitals are cold. Clothes for Abby. I’m sunburned.  Stop. Focus. What do I need? Where are my t-shirts?


“Get Heidi!” I yelled to my boys downstairs.  “I need a diaper bag. I need…shit…” I notice my hands trembling. Pull it together. Breathe. Lance is sitting on the bed with Abby who has fallen back asleep. Her breathing is too labored, but the shivering has almost stopped. Her fingers were still purple.


We need to go. We need to go. Where’s my phone? Breathe. Breathe. Shhhh. Lance carried Abby who was at this point not waking up to the car. Heidi handed me my keys and a soda as I ran out to the car.  Too fast. This is going too fast. The last time her body reacted like this she was carried away by a helicopter.


I gun it out of the neighborhood, careful of the kids playing as the sun shined too brightly in my window. I glance back at Lance. His face grave as he held Abby in his arms. He was too afraid to put her in her seat where her head would slump against her body, further obstructing her already labored breathing. The car was hot, but Abby was still shaking so we didn’t turn on the air conditioner.


Grateful for a car with some horsepower, I screech the tires as I head out onto the main road to the hospital. I’ve done this drive too many times in the amount of time we’ve lived here. I clench my fists and release them again in an effort to make the shaking in my hands subside.


Cars are too slow. I pound my hands on the steering will in an unseen effort to get them to just move.


Breathe, Abby. Breathe. Slow it down. Please, God. Slow it down.  Her eyes were still closed, her head still slack against Lance’s chest. Her body seemed to calm a little. She was no longer shivering.


I notice little things outside. Cars parked on the side of the road, people in the strawberry patches at Shartner Farms. I glance back at Abby. Her color was returning to her fingers, the mottling on her skin had almost disappeared.


“She’s okay. She’s okay. Her breathing has slowed down. I think she’s responding to the medicine,” Lance says. I pull over and open the back door. Her breathing had slowed. Her chest had stopped pulling into itself. She was okay. She had responded. She was sick, but not hospital sick.


I shut the door to the car and place my hand against it, feeling the heat under my palm. I steady myself for a minute, convinced I’m about to cry. I don’t usually have time to break down fifteen minutes into trauma. It’s usually days before I realize how scary things got. She was okay in almost the same time it took her to scare us in the first place. She’s okay. The fear that had been directing my movements now had little place within my body. I felt it wash through my veins.

I hate being afraid. I hate it. I hate not knowing if she’ll respond to the medicines we give her at home or if we’re on our way to our next trip to intensive care. I hate the worry that accompanies the knowledge that without intervention, we could have just lost our daughter. In fifteen minutes.

I’m exhausted. The fear that pushes me to act also seems to drain me of any energy when it leaves my system. My bones hurt. I know I won’t sleep much tonight. I will sit by her bed and listen to her breathe. With any of my other kids, we would have still gone to the hospital to make sure everything was okay. But for Abby, we only go to the hospital when we have no other choice. Exposing her crappy immune system to new strains of her next emergency doesn’t make a lot of sense when we can care for her at home. Still though, I think about what a relief it would be to have her hooked up to machines that would watch her sleep so I didn’t  have to. So I could sleep.

I laugh. I wouldn’t be able to sleep in the hospital, either.

Abby · Down syndrome

Abby’s first day of school.

Abby's First Day of Special Education Preschool

Today was Abby’s first day of preschool. Her third birthday is tomorrow, so she transitioned out of Early Intervention to the school district for preschool. It’s a little surreal having all of my children in school now. I didn’t think it would happen this fast. For children with special needs, getting a lot of extra help early as their brains are still developing goes a long way. I didn’t love sending Casey off to school at three, and honestly, I’m not in love with sending Abby off. I didn’t sleep at all last night. I kept thinking, “She’s so tiny!” and “She’s too young for school…I can’t do this. I can’t put her on a bus!” It was all of the same things I thought with Casey.

There was a Hey Crazy Ladytwinge of heartache as the little bus pulled up my driveway. Again. We’re doing this all over again. I remember putting Casey on the little bus when he was three all too clearly. Every day for a month he’d scream and yell as I buckled him in. He’d cry and pound on the window as the bus drove away. I’d cry as they drove away. It was the only way. We tried driving him to school, but the half-hour rage would happen there instead of on the bus.

Today we drove Abby, but I took the chance to meet the bus driver when they mistakenly came to get Abby.  The bus driver and the aide were as cute as they could be and were genuinely excited to meet Abby. That put me at ease a little.  The boys made this morning a celebration for Abby. I was talking about it and Peyton said, “Abby’s going to school today? This is exciting!” They all hugged her as we left and congratulated her on going to school.

Everything went perfectly at school. I stayed for too long hoping that Abby would get a little clingy, but that’s not her style. I was having a harder time separating than she was. I went to kiss her goodbye and she did her deep sigh of “commmeeee onnn, Mom” and brushed me away.

Mostly True Stuff

She seemed to enjoy the bus ride home. The aide said that she growled at her most of the way. That’s my girl.


Just now I heard Casey talking to Abby in the other room. Their conversation went like this:

How was your day at school?

Aaahhheeeyahhhhh (the fact that she vocalizes back to Casey is a big deal. Abby’s pretty quiet most of the time)

So I guess it was good?


Not good? Was it because you couldn’t hear your teacher? What’s your teacher’s name Abby? Right. You can’t talk. Probably wasn’t good because you can’t draw good either.

(That last part was a nod to what happened last night: )

toddlers are jerks


Casey heard me laughing, and asked why. I think about how far he’s come since that first bus ride. I think about how far I’ve come from being that girl who stood barefoot in her driveway, sobbing as her son’s bus pulled away.  I think about the relationship Casey has with Abby and how lucky we are to have both autism and Down syndrome in our home. I’m grateful that the twinge of sadness today as the bus pulled in was only a twinge. I’m grateful to be as prepared as one can be for another round of specshe is fierceial education.

My worries about her being so tiny were unfounded. This quote applies:

Like everything else that comes at her, Abby rocked it.  I love this last picture so much because it shows her sass, and also because I think she looks SO MUCH like me.

rocking preschool

autism · blogging · Down syndrome

I’m listening.

I got an email asking me why I don’t write as much about Down syndrome as I do about autism. The answer is simple: I know more about it.  We started the process of getting Casey diagnosed 8 years ago this month.  As much as I wish I could say that there have been days that I didn’t think about Casey having autism, that’s just not true. It’s always there. We’re always planning around it, building it, and trying to use it to Casey’s advantage.

I’m still relatively new to Down syndrome. Abby turns three this week, and while I can tell you ALL about infancy and toddler-hood with her, I still feel like I’ve scratched the surface of what life with Down syndrome is really like.  I see Down syndrome so differently from how I saw it when she was born, when she was 1 and even just a year ago. I can’t imagine where I’ll be 5 years from now. I hope by then I will have  a better understanding and could write more about it than just our own personal experiences.  Really though,  with autism or Down syndrome, this blog is mostly just our personal experiences.

Instead of using this space to hear my own pontifications about Down syndrome (which I do, don’t get me wrong, just not all of the time), I’m listening.

I’m listening to the parents who have children older than Abby.  I’m listening to adults with Down syndrome, too. There is something about life experience that says so much more than anything I can find in a textbook.  I love reading books, blogs and articles by people who have children Abby’s age, too. It’s great to have people I can identify with.

But to be honest, I have a really hard time when someone with a young child with Down syndrome openly says that they know as much as parents who have been doing this for decades. I would never want to be seen like someone who thinks I know beyond what life has taught me. Who thinks that I truly understand what life is going to be like even five years from now, much less ten or twenty.

It works that way with autism, too. I’m listening to the parents who have been doing this for a long time. I stumbled across a fantastic post written by a mom whose son is older than Casey. There’s a clarity in her voice that I don’t have with Casey right now.  The post is here: What’s Your Name?

So, I hope that answer suffices. With all things with this blog, I will write our experiences, but I can’t write beyond what I know. I’m still new to all of this really, and I’m grateful for people who take the time to help teach people like me when I get the chance to be quiet. To just listen.

Down syndrome · Uncategorized

How to Survive A Sleep Study.

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?

autism · Down syndrome

Given To Fly.

Today we did Abby’s first Individualized Education Plan (IEP) at the school district.  I really hate IEPs.

As I drove to the meeting, I played Pearl Jam’s “Given to Fly,” the song I used to listen to a lot after Casey was first diagnosed with autism. I turned the music on as loud as it would go before the garbage in the doors rattled and let the music surround me for a bit.

“He could have tuned in, tuned in, but he tuned out…”

I thought about all of the IEPs I’ve done with Casey. All of the fighting with the district over shitty teachers (just one, actually…), therapy times, inclusion, etc. The time I stood in a Michael’s and screamed into my phone at a school psychologist, “I know our rights! I’ve read all of IDEA! You don’t know what hell you’ve just unleashed…”  All of the hours sitting around tables negotiating. Losing my shit when I wanted to stay composed, staying composed when I wanted to strangle someone.  I remember nodding in numb agreement when they told me that Casey would probably never be able to be in a regular classroom…

“A wave came crashing like a fist to jaw…”

Then I thought about moving to Arlington and having the special education teacher, Gina, meet Casey and say, “He’ll mainstream. He’s going to do great. We’ve got this.”

“Delivered him wings, ‘Hey look at me now!’ “

Handed to us was a classroom with an amazing regular teacher and a support staff that would help Casey realize his potential. Gina, who would push Casey beyond our expectations. Who used his strengths and his passions to expand his education to things once thought unattainable.  We moved to Rhode Island to a new school system and a new way of approaching things. Gearing up for a battle for services, Casey was welcomed by a staff who was willing to bend as far backwards as necessary to provide him the best education they could.

“He’s.. flying
High.. wide”

Today at Abby’s IEP, goals were made and services were given without me even so much as having to hide clench fists under the table. The IEP was written for here, but will have to be ‘honored’ when we move back home to Washington State in August.  She’s offered speech, occupational and physical therapy in the classroom three times a week for all. She’d be in half day of developmental preschool, then spend another half day in an inclusionary preschool with “typically developing” peers.  The guidelines for these services are outlined in the Individuals with Disabilities Education Act, which is federal law, and then interpreted and carried out by the different school districts.

The interpretation of necessary services vary wildly. From us being told that Casey would never mainstream on the west coast, to him being readily mainstreamed on the east. From Abby getting 28 hours a week of services on the East coast to four and a half on the west.  That’s right. I called the Office of Special Education in our district in Washington and that’s what they would give her. No inclusion with typical peers. Two days a week, two hours and fifteen minutes a day.

I’ve been thinking a lot about those disparities. Is all about money? No. Is it all about teachers? Absolutely not. The teachers and staff in Washington want the children to be successful. Besides the two I’ve spoken about, all loved Casey and really had his best interests in mind. So what is the biggest difference?

The parents.

“He floated back down ’cause he wanted to share
His key to the locks on the chains he saw everywhere”

I’ve read the history of special education law- and it was not brought about by lawmakers. No, it was fought for by parents. Improving districts and schools has been through battles won that can’t possibly be shouldered by the teachers and staff alone. Reform needs to happen. It takes parents who know their kids need and deserve better. It takes losing your shit when you’re supposed to stay composed, and staying composed when you want to strangle somebody.

Up until now I’ve fought leaving here with all of the rage in my soul. I’ve often pictured myself screaming and clawing at the hardwood floor of the home we’re renting as Lance drags me out by my feet. I really liked the idea of my kids’ IEP meetings not being a battle of wills. I liked the idea of it just being easy. And then I remembered that mom, screaming the words to a Pearl Jam song as she sobbed in her car after moving her child from a regular kindergarten to a self contained special needs classroom, after being told repeatedly that he would never fit in in a regular class.  I ache when I think of that moment. I ache that parents are still having those moments and don’t know they can fight. They don’t know how much they can change.

So we’re going back.

Reforming special education

“He still gives his love, he just gives it away
The love he receives is the love that is saved
And sometimes is seen a strange spot in the sky
A human being that was given to fly”

Maybe the fights we’ll soon face will pave the way for other families to receive better services than we did. In the schools we’ve been to here on the East Coast, we benefited directly from the fights of the parents who went before, and for them, I am eternally grateful. I am excited to join the ranks of the parents I know in Washington who are already working for more. I’m excited to give back what was given to me by the generation of parents before me.

And in your schools in your cities and states, will you join me? I don’t know how, but I do know why: To give our kids wings so they can fly.

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

And I’m jealous of you.autism down syndrome jealousy special needs

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, sometimes of pain and worse times of pity,  as they notice your daughter’s extra chromosome. I see you in the malls, walking with your kids, not worried about what next sound is going to send them running in terror 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.

I listen as you whisper in your child’s ear. You hum songs and they respond in delight.  My heart aches as realize that my daughter has never heard the sound of my whisper. That late night songs sung to comfort and every whispered, “I love you” never made it past her tiny ear canals.

The jealousy takes its place next to the ache in my heart.

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 work for your child’s place on team. I work 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 wI'm Jealous of youith disabilities any more than it’s my fault that I do. With my oldest, I loved meeting those milestones, and I know I bragged about them. 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 naturally 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 who can hear as much as she does, and is doing as well 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.

autism · Down syndrome

Seclusion and Restraint

Stop seclusion and restraint
Casey at age three

Casey was three and non-verbal. I had fought to get him into a preschool that was every day of the week, and for more time than the other special needs preschools in the area. I thought I had done right by him. By this time, I had three kids under the age of four, and was battling chronic pain. In the year that he was in that class, I had four surgeries and seen countless specialists all to no avail. I was overwhelmed and missed the signs.

Something wasn’t right. Casey is autistic and had always had a tough time with school. Transitions were tough. He screamed, cried, and melted down every day. We knew when we built his IEP.  In some of the forms I had signed while we were getting him settled into school was one for the use of restraint and seclusion in times where Casey was in danger of hurting himself or someone else. I asked them what they had meant, and they showed me a little chair that would slide up to a table that had a little buckle over the lap. I was okay with that. I knew I couldn’t expect the teachers to be one on one with him when they had four other children with autism to attend to.  I also knew that Casey could be explosive and I didn’t want him to harm another child or himself . I trusted that the teacher would only use these methods in the very rare even that nothing -and I mean NOTHING- else would work.  His behavior escalated at school and at home. As things got continually worse at home, I figured it was my fault.  I thought that he was picking up on my stress and my exhaustion. In pain every day, I couldn’t work with him the way he needed.

It wasn’t until the teacher of his preschool class went on maternity leave that I finally learned the truth about the situation. Casey wasn’t just being restrained by the chairs- that was benign compared to the seclusion.  One of the aids finally confessed that the teacher had been locking him in what amounted to a storage closet for extended periods of time during the day. The day I found out my heart crumbled into a million tiny little pieces. I still ache when I think about it.  There was very little recourse for the teacher. I had signed off on it. She wasn’t invited to come back after her maternity leave was over, and was thankfully replaced by one of the most amazing people I’ve ever met. But there was no discipline. She didn’t lose her teaching license. She could very well be teaching students right now.

Teachers like these are the exception to the Special Education standard. Most teachers are amazing. But not all. Some are overwhelmed. Some are under-trained and some schools are significantly understaffed. Some should have never became teachers to begin with and aren’t fit to serve the most vulnerable students.

When we had Abby, the thought occurred to me that we were again facing a situation where my child wouldn’t be able to tell us what happened at school. Where if we did get one of the teachers that suck,  we wouldn’t know it until it was too late. Until damage was done.  That’s why last summer, along with the National Down Syndrome Congress, I pounded down the doors of my congresspeople in Washington DC, with these facts (Some have been updated to reflect changes that have been made on individual state levels over the past year):

  • There is no one federal law that covers all students, instead, a ” patchwork of state laws, regulations, nonbinding guidelines, and even utter silence.” (Jennifer Butler, How Safe is the Schoolhouse)
  • The use of restraint in schools has been attributed to the deaths of at least 20 students.  Restraint is dangerous. The practice of restraint should be limited to only when there is a physical danger to students, and even then only after all other methods have been exhausted and only by someone trained in such techniques. Currently, only 18 states have laws that limit restraint to this in children with special needs, 13 for all children. Even worse, only 27 states have laws against using positions where breathing is compromised for people with disabilities, 20 for all children.
  • Only one state bans the use of all seclusion for all children, 4 ban it for children with special needs specifically. Children locked in closets, bathrooms and other places (like the storage room Casey was locked inside) are frequently left there, unobserved, for long periods of time.  Instances of children being killed, injured or traumatized have been reported.  Lots of times, children are left in seclusion until unreasonable demands are met. In Casey’s case, he was left in there and told to “calm down.” He didn’t understand those words nor did he have the ability to self soothe or calm down on his own when his needs weren’t being met and definitely not in a place that was frightening to him.
  • Only 20 states have laws requiring that parents be notified of the use of restraints or seclusion. So, if you’re not in one of those 20 states, this could go on without you even knowing.

Obviously, this is wrong. It’s wrong that most or our schools don’t have the same criteria for seclusion and restraints that hospitals and prisons have. When I asked my senators and representatives why they wouldn’t co-sponsor the bill, one of them said that the teacher’s unions didn’t want any more rules. This was after the bill was downgraded to a mandate- meaning it wouldn’t even be enforceable! States are working to enact regulations, and while some come close or even exceed the standard set out in a bill being introduced in the House, most are far from it. Some states have regulations and guidelines that aren’t binding, and then don’t go far enough to make sure that rules are being met. Fortunately all is not lost, a new bill has been introduced and it needs your support. Things have to change for our kids. There are things you can do now to protect your own child in their own school, and there are things you can do to affect change for all students.

So what can you do?

First, make sure your own children are protected. While we wait for laws to catch up to common sense, take the necessary steps to ensuring that your child is safe at school. Find out the laws in your state. If they don’t go far enough to protect your child, write provisions into their IEP. Written in Casey’s IEP is that the use of seclusion and restraints is never allowed. This wasn’t a hard thing to ask because the school doesn’t allow for it anyways. That being said, not all schools are like the one we are attending, and you need to know what behavioral plan is in place for your child.  Follow up. If you think there might be a problem at school, go with your gut. Make sure you have a relationship with the teachers and paraeducators.

Sadly, in some cases, even this isn’t enough. In the past week three personal friends have had to fight the schools over abuse, and improper restraint and seclusion. This is why there needs to be federal laws that would help instances like these to not happen, and if they did, for teachers and schools to feel the full weight of the law.

Second, make sure ALL children are protected. These laws need to cover all children, both disabled and non disabled.

Please CALL your members of Congress and ask them to Cosponsor and Support the Keeping All Students Safe Act, HR 1893. 

Dial 202-224-3121; ask for your Representative’s Office, and then ask for the education aide.
The keeping all Students Safe Act will:

The Keeping Students Safe Act will:

  • ban restraint/seclusion except in emergencies where someone is in danger of physical harm
  • require that parents be informed if their child was restrained/secluded on the same day that the event occurred
  • ban restraints that impede breathing, mechanical restraints, and chemical restraints
  • prevent restraint/seclusion from being used when less restrictive alternatives, like positive supports and de-escalation, would eliminate any danger 
  • require that if children are placed in seclusion rooms, school staff must continuously visually observe them
  • ban dangerous aversive practices that threaten safety; require the collection of data; and require appropriate training of staff

For more information please visit:
Be sure to read:, which is where most of the figures in this post are found.

Please share this post or pin the picture below as well:

Keep All Students Safe Act
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autism · blogging · Down syndrome


U.S. District Court for the Middle District of Tennessee/Holland Family
U.S. District Court for the Middle District of Tennessee/Holland Family

Having a child with disabilities really shows you how great people can be. Unfortunately though (but thankfully far less often), you get to deal with truly horrific individuals. There are people out there who simply have no conscience. They are out to get a laugh and don’t care who they hurt.

Case in point:,  To summarize,  Adam, who has Down syndrome took a class at Vanderbilt University, where this photo was taken of some artwork that he did and was obviously proud of. A radio station somehow obtained that image, and photoshopped it to say “Retarded News” where the drawing once was.

Can you imagine the pain the family felt when they saw their son being used in such a derogatory manner? I would have sued the hell out of whoever owns the radio station- and they are. I hope they win.

With this as a backdrop, someone alerted me to the fact that again, Abby’s pictures are being stolen and used on websites that have no right. Here’s the tricky thing. I don’t mind people “sharing” her picture from my facebook page. The “share” button makes it so that when people see the image and comment on it, it comes back to the original imagine on my site. It gives me some feeling of control. I can see where it has been shared, and I can see if people start saying nasty things on it.   What some pages do, and it’s really quite brilliant and terribly sneaky all at once is instead of “sharing” the pictures, they download them and re-upload them to their own pages. They do this so that when they are shared from their own pages, the shares and likes come back to them, and not to the owner of the page. Sometimes they’ll give the copyright holder a shoutout, but it’s not the same as “sharing” the work.

These pages know exactly what they are doing. They are not doing this by mistake. If they were, you think they’d apologize and just take the picture down. But they don’t! Instead, they delete all of your comments and the comments of anyone else who state that the image is stolen. Then they ban you or anyone who commented. They have to keep those pictures up as long as they can because the longer they’re up, the more traffic they drive back to their own page. This is why these shady pages have huge numbers of people who “like” their page.  The easiest thing for any person or page to do is simply click “share” rather than going through the trouble of downloading then re-uploading the image.  The following pages are among the worst offenders. They have not only stolen pictures of Abby, but of Casey and artwork that I made for this blog:

If these sites are really out to promote autism and Down syndrome awareness, why not “share” the pictures from the site they originated from? Why not work to share the stories of other members of the community? Instead, they take the pictures and the credit that goes along with them. It’s unethical at very least, and worst, it’s shifty and illegal.

And it puts pictures out of control of the owners. These pictures get stolen and used by trolls who are vicious in their need to tear down people with disabilities. The three sites above have shared a bunch of my stuff. Combined, the shares amount over 10,000 from their respective sites. I’ve lost control. And honestly, it makes me want to shut it all down right now.

I started writing this blog as catharsis dealing with a very unique family situation. It’s helped me work through so many things. A side effect of that is that I feel like I’ve helped people see disability a little different. I hope that I have helped other mothers to not feel so alone through this journey. I hope that I’ve done some good. This blog has helped me find my own voice. But I wonder if it’s worth the cost. I shudder at the thought of running across a picture of Abby used for something as terrible as the story above. Last night as I saw things getting out of hand, I was ready to just shut it all down. I took down all of the pictures of my kids off my facebook page, and I’m wondering if I should do it  here, too. A number of you have mentioned to watermark the photos- which I need to get in the habit of doing again, but that doesn’t stop people from sharing the photos as their own, and people rarely search out the photo’s true owner by the watermark. It’s just a sad fact of Facebook.

It makes me so sad. I think my daughter is so beautiful. I want the readers here to see how beautiful she is. I want them to read about her life and how she’s changing me, and how she will change the world.  I know, honestly, that if I keep putting pictures of her up, I need to just make peace with the fact that this is going to keep happening. The more this blog grows, the more visible we become. I hadn’t thought this through.

I don’t know what to do. I feel so defeated.


If you’d like to help me out and report the pages, that would be great. If nothing else, make sure you don’t “like” them or share the work they’ve stolen. If you are a blogger or if pictures of your children are in a public arena, you might want to check these sites and others to make sure your work hasn’t’ been stolen, too.