autism

Autism Parents: It’s Okay.

I wanted to say publicly the things I’ve said to so many parents I’ve encountered along the way: It’s okay.

It’s okay to be upset when your child is diagnosed with autism. It’s okay for it to take a while for you to adjust your entire world to a new normal. It’s okay to be sad. To be frustrated. To scream into pillows and cry yourself to sleep at night. It’s okay. It doesn’t mean you love your child any less. It doesn’t mean you don’t want them if you don’t want their autism. What good parent wants their child to have a disability? What good parent doesn’t feel pain at the sight of their child struggling? Having a tough time with the diagnosis shows how much you love them. It’s not because you don’t accept them. Don’t ever, ever, let anyone tell you differently.

autism parents it's okay
Me holding Casey, both exhausted after a rage that lasted several hours.

You will go through the motions. You will seek desperately for a cure. You will despair when you realize that there is no cure. You will get through that. You will move on to a place of understanding. It’s okay to get your child carefully chosen therapy and programs that will benefit them. It doesn’t mean you are trying to change who they are or stamp out their autism. It means that you want to give your child every opportunity to manage their disability and to thrive in this world. What parent, of neuro-typical children or other, doesn’t want their child to be given every chance to succeed? Does my getting Abby, my daughter with Down syndrome, therapy and extra help at school mean that I don’t accept her Down syndrome? No, it just means that I want her to be the best Abby she can be. It’s the same for my two children without disabilities. I want them to grow and learn to the best they can. Doesn’t mean I don’t accept that their best might not be the same as others.

Acceptance doesn’t mean you don’t have the right to be tired. To be frustrated. To be sad. Acceptance doesn’t come all at once and you will find it’s more of a tight rope than a way of life. It’s been 8 years since Casey was diagnosed. It took me years to get to a place where I was okay with him having autism. I still hurt when he hurts, it still kills me when he’s sad that people don’t invite him to parties or exclude him from games because he doesn’t understand social norms, or because he freaks out when things get to be too much. It doesn’t mean that I don’t ache to take the pain away he feels when his world isn’t the way he wants it to be. I am his mom first. Having empathy for my pain is not the same as sorrow or not accepting him for who he is. It means I love my child fiercely and I hate when he suffers because of his autism.

Autism is a disability. It’s not wrong to say that. It’s not ableist to want your child to be the best that they can be. It’s parenting.

Stay away from people who tell you that it’s not okay to feel anything you are feeling as you work to get through the day. It’s okay to not be okay all of the time. Some pain demands to be felt in order to deal with it and move on. It’s not wrong to seek help when you find that you cannot manage the pain on your own. Find friends that understand. Go to parent meetings in the school district or seek them out through your Early Intervention program. They’re out there. Above all, be honest. With yourself and with others around you. Accept help when people offer. Take any break you can get.

You will find in quiet moments the good in autism. Even if they are fleeting. Even if it’s harder than you had ever thought it would be. You will one day stop seeing the autism as separate from your child but a piece of what makes them who they are. You won’t even realize that it’s been happening for a while. And you will see that you wouldn’t change who they are for anything. You will find joy in their joy, whatever looks like. It doesn’t mean it will be easy. It means it’s okay.

advocacy · autism · Down syndrome

Retarded.

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

Retarded.

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

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

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

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

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

autism

Understanding.

Imagine your child has a pet. A pet they’ve had for years and are deeply attached to. Now imagine your child losing that pet. What would happen? Wailing? Gnashing of teeth? Would the loss of such a pet mean that the child couldn’t, understandably, even make it through a school day because of their insurmountable sadness?  

Now imagine that happening every day. Sometimes twice a day. This is what happens with Casey’s Angry Birds plush toys. He’s obsessed. He usually has one that is the focus of his entire being, but if he’s home, he’s you can find him surrounded by at least three or four of them. The minute one goes missing-and it happens all of the time-Casey’s black and white thinking won’t allow for calm. The bird is gone forever.  He can’t think clearly to retrace his steps to find where he carried it off to. In his rage, he usually blames Abby. Abby’s not always innocent. She enjoys trucking those birds around, too.  Lance and I spend a great deal of time searching for Angry Birds.

That’s what the last two days have been. Casey lost his Bomb Bird, pictured here in better times (he’s the black one):

angry  frustrating damn birds

He also lost the “Boomerang” bird, but that wasn’t the focus of his sorrow this time. The loss of the bird mirrored the sorry of losing a beloved family pet.  He wailed. Deep, heartbreaking sobs. We assured him that we’d find it, but it wasn’t enough to settle him down. I heard him up talking several times during the night, and he was up for the day at 4:45.

The morning went fine, but by noon, I got a call from the school saying that Casey was too sick to stay. We’ve had colds running through the house, so I imagined one was coming on when I went to get him. He seemed so out of it. As I was talking to his para, he slumped down on the floor and leaned his head against the window. I watched as he stared off into the distance. He was still. Casey’s never still.

The day moved on with me doing my best to distract him from the missing birds as I searched.  It was good in that it gave me a much needed reason to clean out closets, and under all of the couches and beds in our house. But still, no bird. Carter was home sick, too, so I couldn’t just take him to get a new one. I couldn’t have done that anyway, really, because when I mentioned buying him a new one, his fit escalated. “I want muhmuhmuh myyyyy Bomb Bird!” he sobbed.

I cleaned out everything. Lance went so far as to searching the neighborhood, even knocking on doors. We were just a shade of crazy away from putting up missing signs.  The wailing escalated to screaming and aggression.  With the sound of his cries echoing in my ears, I picked up my keys and went out buy a new angry bird to “find” in the yard.  My breath caught over the lump in my throat as I went to tell my husband I was leaving. There in our bedroom, with only a little light seeping in from the closet,  was Lance, holding my very-tall-for-his-age son against his chest, rocking him in an effort to help him find some peace. “Shhhhh….” he whispered as the sobs still reverberated through Casey’s body.

Five stores. I went to five stores. By the fifth, I was seriously fighting back tears. My ears were ringing and my body ached from the massive overhaul I had done on the house. I couldn’t imagine having Casey wake up in the morning without his bird. I don’t know if he could handle it. I wasn’t sure I could either. It wasn’t until then that I realized that Casey hadn’t come home because he was cold-sick. He was heartsick. The plush toy means as much to him as any attachment people have.  I stopped thinking about how we didn’t have an extra ten dollars to spend on it or that maybe I shouldn’t get him one to teach him to be better with his toys (it wouldn’t work, Autism always wins the Losing Stuff battles). I felt for a second his pain.  Rejected from all the regular stores that I hoped would carry it, I figured that maybe getting him his Halloween costume- again, a Bomb Bird- would be enough to cheer him up for a day so I could call around to find him a new one. They didn’t have the costume.  My insides sunk, tears betrayed me. I wiped them off with the back of my hand and kind of laughed at the craziness of it all.  I tried to reason with the Autism, “It’s just a silly bird!” my brain screamed.  But Autism and I both knew that wasn’t true. The bird was Casey’s friend. He doesn’t have many of those. As I trudged slowly out the door, something on a cash register caught my eye.

A lone Bomb Bird.

I picked it up and embraced it like any tearful crazy woman at 8:45 in a party supply would do. I and moved down two registers to a waiting employee. “Did you find everything okay?” She said with a smile. My voice caught as I said, “Yes, I did.” And then I just said to hell with it and let the tears flow freely. “You don’t understand,” I said trying to lessen the employee’s shock at my affection for a plush toy, “My son is autistic. We haven’t been able to find his bird…I’ve been everywhere…”

“I understand,” She said back. My eyes met hers, and she had tears in them as well. “My son has autism, too.”

autism

Approach.

I went on a field trip with Casey’s entire fourth grade today. To save money, the school has parents drive the kids. I had three extra kids with me who engaged with me and each other the entire drive. The fourth, my son, scripted in the back seat and refused to engage with anyone else in the car but me. The kids tried. They really did. He was somewhere else. I explained to the kids what he was doing and how cool it is that Casey can memorize things verbatim so quickly.  They thought it was cool, too.  My heart ached a little as we continued to talk about everything else, with Casey’s quiet scripting filled the spaces in between.

We got to the farm and went about doing scavenger hunts, talking about animals and nature, and playing games. Casey clung to me the entire time. When kids tried to engage him, he didn’t respond, even though he’s fully able. When no one picked him to be their partner time and time again, my heart broke.  My frustration boiled up as teachers repeatedly tried to get him to make eye contact, and he would  not.  All of this time, I watched as the other adults chaperoning the trip talked and laughed with each other. My opportunity to make friends was being lost to having to be no more than five feet away from my son. My soul felt as though it was taking a beating over and over and over again.

With all of this building inside of me we went to do an egg relay. The rules were simple: carry an egg on a spoon to the other half of your team and hand it off. If your team broke two eggs, you would lose. The first one to get through all of the people on their team won. The teacher counted off numbers and one kid quickly turned a little red in the face as he said, “I don’t want to be on Casey’s team! There’s no way we’ll win. He’ll get all crazy and drop the eggs even before we get a turn. We’re going to lose.”  I had to swallow a couple of times so I didn’t yell. Firm but calmly, I said, “That’s not very nice to say. How do you know that he’ll drop it? Give him a chance.”  I was thinking, “You’re a jerk, kid. The minute I get a chance, I’m going to trip you.”  We assembled the kids in their lines where I could see that the jerk kid was on the verge of tears. It only made me more mad. I dug what is left of my fingernails into my palms. A kid who had missed the instructions asked us what we were supposed to do. A couple of the kids piped up, and a thought came to me. I asked the jerk, “So, what’s the secret to this game? How do you win?” The kid’s eyes lit up as he explained to all of us how if you go slow rather than trying to run, you’ll win because you won’t drop the egg and have to go back. He said, “Casey, did you hear that? It’s easy. Let me show you.”

The kid really wanted to win and was justifiably worried that Casey was going to get all crazy. Casey does get all crazy. While what the kid had said wasn’t nice, it also wasn’t wrong.   My anger towards him didn’t help Casey at all.  In fact, had I unleashed on the kid, it would have only harmed any hope of a relationship with Casey. I would have been yelling at the kid for me. Not for Casey. Casey didn’t care. The key was to help the kid see that there was a better approach.  In it, I saw that there was a better approach to what had held me on the verge of tears most of the day.

On our way home from school, Casey leaned back and sighed, “This was the best day ever! I love you, Mom!” …Wait, what?  It was? The entire time I thought Casey had just been trying to make it through. Trying to deal with the absolute sensory assault a farm full of fourth graders can be. Clinging to me because he was feeling the rejection of the other kids who had tired of trying to engage him.  He didn’t look like he was enjoying it the way I had looked when I was feigning happiness throughout the day. He just was happy.  The things that had chipped away at my insides were about me. My pain. He didn’t care to be with the kids. He was excited to just be with me. The entire time while I was worrying about how not socially-appropriate it was for him to want to hold my hand and hug me the entire time, he was just showing me how his insides were feeling. He was just being himself.

Casey doesn’t act like other kids. It makes me sad that he has such a hard time making friends. Most of the time though, it doesn’t bother Casey at all. He doesn’t need friends like I think he should. His self esteem and happiness isn’t wrapped up in what others think. His best day was one that was really hard for me. I was projecting on him what I was feeling, and failed to truly understand that he doesn’t think the way I do. I was approaching Casey’s autism through my own lens, and not seeing the world as he does. He’s made up from different stuff.  Not better. Not worse. Just different. I complicate things that don’t need complication. My approach has been off.

It doesn’t mean that I’m not allowed to feel emotions of all kinds in relation to his autism. That is my reality.  I do need to learn not to complicate things that don’t need to be complicated in his world. There are social skills that matter and that he needs to learn to the best of his ability. Being able to engage with other kids is one of those things, maintaining eye contact is not. But all of it needs to be approached in a way that benefits him, and doesn’t just make me feel better. My feelings, my reality, is mine only.  His reality is his. He’s happy most of the time, and I don’t need to complicate that with things that will only frustrate him in the end.

I’m really pontificating here, aren’t I? I have these resolutions and no real way of getting there. I don’t know how to not feel sad when I see him rejected by his peers. I don’t know how to not be angry when kids are assholes to him, even if he doesn’t understand it. And I don’t know how to approach this in a way that works for him, because it seems like just when I have a handle on his autism, I’m opening the wrong damn door.  I need to stop trying to rewrite the script for our lives that I should have just thrown the hell away when he was diagnosed.  I don’t know how.

I need to let Casey lead a little. I need to observe instead of worry. Go with him to where he wants to go and just let him be who he wants to be. While we were counting the different types of dahlias, Casey popped out of the bushes like this (recreated) and said, “Look! I’m a flower!”

Approach to autismYou want to be a flower Casey? You can be a flower.

 

autism

Kelli and Issy Stapleton, the media, and the story that needs to be told.

Today I woke up, and in the haze that has followed me since Wednesday, I numbly got my kids ready and walked them to school. By the time I got home, I was soaked from the pouring rain. I didn’t realize that I had an unused umbrella in my hand until I put it down after walking inside. Freezing, I made my way to my bed where I now sit.

I looked for an update on Issy Stapleton. I wanted to know if she’s okay. If she’s regained consciousness that was stolen from her just days ago.  The Team Issy page on Facebook hadn’t posted anything new, but I noticed something- it had at least a thousand more “likes” to it.  Before this, every follower on that page had been fought for. Kelli had worked tirelessly to get Issy’s story out. To raise money for her care. I know this, because I worked with her and a friend of mine to get her story on CNN.  That didn’t happen.  Kelli had petitioned news outlets, television shows and even Dr. Phil. She begged and pleaded for some attention.

Today, she got it. As I moved from the Team Issy page to Google to look for any update, I noticed that her story has been picked up by most of the major news outlets. Not the story of a mother who had been fighting the system for years and years trying to get better care for her autistic daughter. Not the story of a beautiful blonde fourteen year old autistic girl who had been denied services time and time again, from the state, from insurance and lastly, again, from the schools. No, the story now being told is of a mother that did the unthinkable. The unconscionable.

I could grapple for months with the knowledge only that my beautiful, vibrant, strong, sunburst of a friend tried to kill herself. I could seethe in rage at her for just that. How dare she take the only mother her children have? How dare she stop fighting? How dare she not tell anyone it had gotten that bad? How dare she leave us? But all of that emotion gets grossly conflated when you add in the horror of the other choice she made that day. She tried to take her daughter with her.

There are no words for the emotions we all feel for that.

The news outlets I read are missing the point. Sure, it’s sensational to see this all-American woman sent to jail for the absolute worst crime a mother can commit, but that story will soon fade away. It will be moved from the front page to the back, maybe with a blurb about what a victory it is that she was found guilty and sent to prison for the rest of her life, but that is all.  We will be left worse off than we were before, inside the autism community and out.

The story that needs to be told is one of an amazing fourteen year old girl who struggled to live in a body that raged beyond her control. A girl who wanted to fit in, be loved, and be herself, but couldn’t quiet the storm within her. People need to know how hard her parents fought for her. No stone was left unturned in her care. Time and time again they were denied access to treatment, to care, to school programs and to hope. They lived life on the highwire of special needs and had no safety net for when they fell. While we can have no sympathy for the last choice Kelli made on Tuesday, we do need to understand what led up to that. We need to get the message out that parents need a safety net. People with autism need easier access to the services they need. They need to be treated as equals, because they are equals.  Parents need advocates. We need to feel that we can be open and honest about autism without being vilified as horrible parents who do not accept their child for who they are. We need to know that people care. And we need a break. A minute to take off the responsibilities of care-taking, parenting, therapist, advocate, and punching bag.

This will keep happening so long as we focus on the crime and not on the criminal and the victim. We need to focus on what we can learn from this to prevent it from ever happening again.   If we do not understand what caused Kelli to break and work like hell to fix it in our own communities and in the system, we are all at risk for it.

All of us.

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.)

 

autism

Guest Post: Know Your IEP Rights

The Importnance of knowing your IEP rightsParents, I cannot stress to you enough how supremely important it is that you know your rights when it comes to your child’s education. I thought I had a handle on it, but I had no idea. Here is our story. I hope it helps one person out there.

After my oldest son was diagnosed with autism, I knew what an IEP was on a basic level. I had a representative with me from our local ARC office with me at that first meeting. I did my research for accommodations of the things that I could see were causing problems for my son in school based on the communication I got from the school and what I knew about my son.

We had a diagnosis from a doctor specializing in autism that our son was not just a “problem child,” like the school wanted to label him and throw up their hands. We knew he needed help. The school had run their tests. Their tests were minimal. You see, because he was an A student, they didn’t see the need to evaluate for speech, OT, or PT. He was getting along “just fine.” I didn’t know I could push for these evaluations. The person there as my advocate never said, “boo,” about such things. In fact, she never said much at all. So much for having an advocate to help me.

I thought we had a decent IEP in place after that first meeting. We would meet every Spring to revise and rewrite my son’s IEP. Every year I would ask about the same issues that had not been resolved the year before. The same issues where we were seeing behaviors year after year. I was told the strategies we had in place would work. I researched some more. I suggested new strategies, and was shot down. I was made to compromise the best solution I could get the school to agree to each year. The school didn’t see the need to retest before the three year re-evaluation period even though their way wasn’t working.

Well, you see, we ended up leaving that school for another option in a blaze of bridge burning due process glory. A better option. An option who was more than happy to run ALL of the evaluations that were never looked at before. It turned out that my son, the one who was doing “fine” academically, but that I saw struggling day after day, the one whose meltdowns our family endured every afternoon after school, has a major core language deficit. So much so that his core language score is lower than that of his brother who is 5 1/2 years younger (also ASD). It’s no wonder he struggles with writing assignments to the point of hating them.

This new educational option also assessed my son’s problem solving skills. My son tanked. TANKED the assessment! I mean we’re talking 7th percentile in two of the four areas, and a total score of 29th percentile. Combine this with the Vineland that our BCBA just did, and it all makes a lot of sense why we see the behaviors that we’re seeing. My son might appear to be an older child on the outside, but that’s not where he is functioning in all areas of his life.

The hardest part as a parent is that I see this boy who has so much in front of him, and yet so much work to do if he wants to achieve the things he says wants to achieve in life. I just want him to be the best him he can be, but the schools make this so much harder when they’re not willing to even evaluate a student for services that they might need. We don’t even know what tools and strategies to give a student if we don’t know what they need by evaluating all areas. For example, my son doesn’t need OT after all. He’s learned how to cope on his own at this stage in his life. But the rest? Yes, he needs new tools and strategies where there were none before because we didn’t know because no one would listen to be and even take the time to look. Some students may not even need these services for very long if they’re started early enough instead of playing catch up.

That leaves it up to us parents. it is IMPERATIVE that we know how the IEP process works and what the schools MUST provide under FAPE and IDEA – laws. I know this often only means the bare minimum as far as services, but in our case, they wouldn’t even evaluate to see if services were necessary. This needs to STOP. Our children deserve better than the current climate in the education system, and it’s up to us as their parents to make sure that happens.

autism · Uncategorized

Alex Spourdalakis didn’t die because of his autism.

Alex Spourdalakis did not die because of his autism. He wasn’t “mercy killed” to relieve his suffering. He didn’t die because there aren’t enough services for people with autism. He didn’t die because people didn’t donate to Andrew Wakefield to “cure” him. He died because his mother and godmother chose to fill him full of sleeping pills. When that didn’t work, they stabbed him repeatedly and slit his wrists while he laid defenseless in his bed.

Alex’s mother didn’t murder her son because she couldn’t get him help. She didn’t murder her son to put him out of his misery.  She’s not a martyr.  She’s mentally ill, any parent who can murder their child has got to be. Her mental break wasn’t Alex’s fault.

It sickens me to see the media playing this story in a way that almost makes what those two women did excusable on any level. That blames everyone else besides the people who actually had the knife in their hands. They chose this. THEY CHOSE THIS. They chose to not seek further help. They chose to believe that his autism was a curse. They chose to not keep fighting. They chose to murder that boy.

I get that there aren’t enough services for people with disabilities. I understand this better than I can detail in a short blog post. But that doesn’t for a second lessen what these people did here.  I get being at the end of your rope. I’ve been there. But there are OTHER options. ANY OTHER OPTION would have sufficed.

My rage in this story only grew when I saw that the video the media is putting out with Alex strapped to a hospital bed has Andrew Wakefield asking for donations. This to me SCREAMS that the mother was being fed the lie that she could cure her son if only she could pay Wakefield enough. Wakefield is a horrible excuse for a human being. He’s not a doctor, that got stripped from him. He’s not a scientist, nor has he ever been. He’s been selling myths, lies and downright dangerous practices because it’s made him RICH. He treats autism as a disease rather than a neurology. He’s perpetuated the myth that autism is caused by vaccines and what’s more, can be cured by such horrific “treatments” as bleach enemas and chelation.  In his effort to be the Prophet of The Cure, he’s made autism something that needs to be cured instead of something that should be accepted. He’s made it so having autism or a child with autism is something to be feared, be sad about, and a situation where it’s okay to kill the child to alleviate suffering.  If you’re a Wakefield supporter, I’m asking you kindly to do your research about him, his methods, both past and present.  If you want to argue about him, this is not the place. There is no defense for him and what his supporters do to their children. None. In a video you can find here, Wakefield says,

“When I first became involved in this fifteen years ago I got a call from a parent in Northern England who said, ‘Dr. Wakefield please do not judge me harshly, but when I die, I’m taking my child with me, because I’m the only one who loves him.’ I did not judge that mother at all, in fact I was moved by the love the mother had, must have, for her child to take her his life rather than rather than have him fall upon a society that really didn’t give a damn.”

I don’t know if there’s a crime worse in this world than a parent killing their child, especially a child with a disability. We need to stop making excuses for people who murder their children. Murder is murder. If the child has a disability, it should be MORE shameful, more heinous because that child is more vulnerable.  We do need better services for families, but this should never be used as an excuse to pardon someone who had other options.

Alex didn’t die because he was autistic. He died because the people who should have cared for him the most gave up. They do not deserve our sympathy.

autism

Using the etiology of autism to piss off your friends and prove a point.

Autism increase graph

 

How many times have you wanted to place blame on someone for something they actually had no control over? I have. I’ve wanted to set fires for that very reason. I’ve found a MUCH easier way to do it though that doesn’t result in a felony arson conviction: SCIENCE*!

That’s right kids, you can use SCIENCE to blame people for stuff. Like their kids’ autism. Up until now, people have only passively suggested that I caused my son’s autism by not breastfeeding or having my children too close together. Now, through the magic of correlation, you can blame people DIRECTLY. It is both easy and fun. All you have to do is find anything that there has been a sharp rise in over the last thirty years, and then make a graph to match the one above.  Preferably use something that will be both insulting and insane.

If you’re too busy to make up your own, I’ve made a few for you.

Gay Marriage

States Allowing Gay Marriage Graph

Your grandmother is right. The gays are going to be the downfall of society.  Their unions are not only tearing apart your marriage, but they’re also causing autism. I mean, LOOK AT THE LINES, man!

Cellphone use:

Worldwide cellphone usage graph. Causes autism

HOLD THE PHONE. Or, more appropriately. Don’t. Don’t hold your phone. Because it causes autism. The more cell phones out there the more autism. Your stupid cell phone causes autism. Throw it in a lake.

Organic Food

Autism is caused by organic food
From: http://boingboing.net/2013/01/01/correlation-between-autism-dia.html

Sure, eating organic makes you feel morally superior to those that don’t, but did you know that your need for pesticide-free foods caused my son to get autism? How dare you? It’s the pesticides that have been keeping us neurotypical all this time!

(Graph used with permission by the generous Dr. Jeffry Ricker, who is by all accounts a badass psychology professor, link in image)

Internet Usage:

internet use

Hate Al Gore? Well, he invented the internet, and since the inception of the internet, cases of autism have risen in kind. Thus, the internet causes autism. Al Gore invented the internet. Al Gore causes autism.

how to cause autism
you can pin this. you really can.

And for those of you who did not know: Jenny McCarthy Causes Autism.

Now you try! It doesn’t even have to be autism related.  Correlation is FUN!

*The author of this blog fully understands that correlation does not equal causation, but she is not sure that other people do. Consequently, her facebook page is RIPE with people who can’t wait to tell her the latest scientific proof that she caused her child’s autism.  This blog post is dedicated to them.

Special thanks to Amanda from Confessions From Household Six for contributing her wit to this post.

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.

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
Whole
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

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.

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.