autism

It’s because I do want a cure.

 (language warning. This is even saltier than usual. Don’t read it if you’d just end up sending me an email saying that I’m a better writer or person or whatever than to use this kind of language. Because today, I am not)

There was this huge uproar in the autism community because one parent said that “autism sucks.”  Apparently it had offended adults who have autism. They see their autism as being a part of them, and so when someone says it “sucks” they can’t help but feel like they are saying that people with autism suck. I’m oversimplifying this, I know.  I read all of the posts, the back and forth. I learned a lot.A lot of these people with autism think that it’s not right to want to cure it.

But it’s different for parents of kids with autism and people who have autism themselves. We don’t see eye to eye because as parents, we just can’t, unless we are on the spectrum ourselves. I WISH I could see the world through Casey’s eyes. I WISH I could get it. I get glimpses every once in a while. And it’s not enough. I’m sorry for that.  I know that a lot of people with autism say it’s wrong to want to cure a part of them that makes them really truly who they are.

They say that it’s selfish to wish that we could “cure” our kids. And you know what? They’re right. I don’t care, either. Casey might live a long, blissful life without any understanding of the disorder I wish so badly he didn’t have. Casey will be happy. I will work my ass off to make sure of that.  Casey will be loved.  So if he has all of those things, all the things that any person wants, why want to cure him?

Because I’m selfish.

Because I want to be able to go on dates and vacations with my husband without worrying that he’s going to really freak out. Because I want to be able to take my children places without worrying that bad shit is going to happen. Because I want to not be so heartbroken every time I hear about a birthday party Casey wasn’t invited to (most of them).  Because I don’t want to feel bad when a parent forces their child to invite my son to a party that they don’t really want him at. It’s not fair to them either.  Because I want Carter to not have had to grow up so damn fast to deal with the stress in our home. Because I didn’t want to have to grow up so damn fast. I’m turning thirty here in a couple of months and I have more grey hairs than both of my older sisters combined.

Because I’m tired. I’m so tired.

I want a cure because I’m so ….ing sick of needing to explain that I ADORE my son, autism and all. Like for some reason if I say that I hate his autism, people think that I hate him. I don’t. They are two very separate things.  I’m sick of offending people when I say that I’d give both my arms for a cure. Because I don’t mean offense. I mean that I’m not working so damn hard to get Casey the best services, the best care, etc, for nothing. Because I want BETTER for him.

Does it mean that there will be a cure in his life? A pill he can take and not be autistic anymore? Or that any of the bullshit you see in the media is ACTUALLY a cure?  Probably not.

DIGRESSIVE RANT: I’m not saying that I’m going to “cure” Casey’s autism now, either. I think that mentality is dangerous and I’m sick to death of the Jenny McKarthys of the world making women feel like they aren’t “warriors” if their kid’s autism isn’t cured by some radical intervention of one sort or the other. I think if your kid is “cured” by just a diet change, just “music therapy (I’ve really heard that one before from someone telling me I’m an idiot for medicating my child)”  they do not have the same autism that my child has. It doesn’t mean you don’t TRY all of those things. And if they help at all, then you do them. But to say you “cured” your child when there’s so many mothers who wish for nothing more is kind of a slap in the face. It’s not a cure all, Jenny, stop saying that to sell books. And definitely stop saying that vaccines are the cause. The blood of the kids who’s parents believe you and end up dieing of something that could have been eradicated LONG ago will be on your hands.

So I guess I need to shelf this whole damn idea and just accept it. And I think I have accepted that Casey has autism.  But acceptance does not mean that you leave your emotional feelings towards autism, or whatever it is your dealing with, at the door. Acceptance doesn’t mean you have to be okay with it. I accepted my dad died soon after his passing, it doesn’t mean that even now, almost 17 years later, I don’t wish he was still around. Acceptance does not mean denial of things that are hard. It just means that you’re working on it.

Sure, I’m a better person because of what I’ve been through with Casey. A much better person, I think, than I ever would have been on my own. Because I am inherently selfish. But where does that mean that it’s okay that Casey has to take the fall because I’m sort of a whore? 

I’m sorry. I had to get the feelings out so I didn’t carry them around with me for the rest of the day. I’ll eventually go back to crappy drawings and rants about my body hair.

I’m still looking for more diagnosis stories. You don’t realize how helpful they can be. I’m seeing that with the letters I have received just in the last day about the Jaron’s diagnosis story. It’s TOUGH to write about. I haven’t finished mine because it’s tough to go back there. But I think it’s helpful, especially to the hoards of parents who are going through it right now.  If you’d like to cross post it, that’s fine, too. Just send me the link.

42 thoughts on “It’s because I do want a cure.

  1. How is this not about me? I am his mother. His autism affects every last bit of my life. This is about me. And I said it was. I said I was selfish! You don't get it. I love my son fiercely. Do I wish there was a cure? Yes! Does it matter to me in my relationship to my son that there is not? No. How does one get over themselves?

  2. I never understood people with the balls to come onto somebody else's blog and personally insult them. And this one even says "Pour your heart out with things I can't say." That's just plain rude.

  3. I hear you. And understand. I do in fact hate that my son has something that makes him struggle. If I could snap my fingers and make it go away, I would. I'd sell my soul for it. To make his life easier… and yes, to make mine easier, too.It doesn't mean I hate my child. I LOVE him. So much. But, if wanting him to have an easier road makes me a bad mom, then that's what I am. Thank you for sharing this. I have a post with my own thoughts- but it's in drafts and I'm too chicken to post. But, you are making me brave.

  4. This is such a hard subject Lexi. It touches so many frayed open nerve endings. Trying to have a dialogue has become so near to impossible when the inherent lack of respect is so prevalent. It is so hard to discuss how you feel when the first thing someone does is come at you. I'm sorry for that. Sigh.As a mom with a child with autism I can see my son struggle. Every day. I love every aspect of him. But. But…he comes home sobbing because he doesn't understand why people don't like him or why he's called funny. Every day he stims, spins and does what he needs to do to get through the day. Each day is a struggle for him. And I love him. I have accepted him. But it does make me sad that he has an extra hard time of things. The only thing I know to do is to be strong for him and help him in whatever way possible. And it kills me to see him suffer. I suffer with him. So yes, autism is much a part of him as it is our whole family. All the things we do to help him, be him.Acceptance is a long road. I'm not sure I'm there yet. I'm not sure I'll ever be. But I do know I've listened over the past week, heard what others have said and I hope to be a better mom because of it.

  5. Urgh, hit "reply" too soon. I mean that a good parent (to me) does not want to see their child suffer, and when there's nothing that you can do to fix it, well then naturally you will be frustrated, and hurt, and angry. Honestly… there's nothing wrong with that. And I'm so sorry that the very first comment you got was so rude. 😦

  6. Lexi, you are not selfish. You are very caring and will help out anybody you don't know/barely know in a heartbeat. I know this for a fact. You have the right to express whatever feelings you care to on YOUR blog. Just as this Char person has the right to express her feelings. But that doesn't make her any less of an a-hole.

  7. I'm going to start my comment by apologizing, because I am probably very naive about this particular issue, and I don't want to make anyone upset. I'm having a hard time understanding something, and my question is sincere, so no one be offended by this, please. As a parent, all you ever want is the very BEST for your children. Best of everything that you can possibly give to them. Including quality of life. Don't confuse this with spoiling them, because that's not what I'm talking about here. So, here's my question: Why WOULDN'T you want a cure?! Go with me here… if my child was struggling with something- anything- and there was a reasonable solution, I would absolutely be all for that. I am confused by parents who don't want a cure. Wouldn't they still be your sweet, wonderful child… just with an easier life? Sorry, hopefully this is coming across the right way. I think it's absolutely reasonable for you to want all of those things, Lexi, and to be "selfish" sometimes. Being a parent is such a selfless (and sometimes thankless) job. It is hard. Under almost any circumstances. Shoot- I think it's hard and I only have two kids. You have four. Plus extra challenges. If you were really selfish you would have given up and moved to an island somewhere and some guy named Paulo would be serving you drinks by the beach right now. But you didn't do that. You are there for your kids- hair-pulling, sad, chaotic, terrifying, shitty moments and all. And I think it's totally acceptable for you to wish they didn't happen very often. Anyone who says "Get over it. It's not about you", just doesn't get it. You are a good person, and a great Mom 98% of the time. It's okay to be JUST Lexi, and wish some things could be different the other 2%.

  8. I get what you said 100%, I fucking hate autism right now! I found your blog about a month ago, and I have to say, I have a mom crush on you, please don't be creeped out by that, lol. I actually read most of your previous post and can totally relate to most of it. I love my daughter more then I can even express in writing but what the autism has taking away from her I grieve. Why wouldn't I want a cure??? I just don't get that point a view. Molly will be turning 6 Sat. and this will be the 3rd year in a row that we will not be having a party for her and I am truly saddened by that. Why no party?? She doesn't like a bunch of people in her house, she doesn't eat cake or ice cream (looks like we are trying to feed her rat poisoning when we have tried), can't sing "happy birthday" that turns into an aggressive meltdown, she doesn't even understand what a present is or how to unwrap one. We WILL be doing something that she enjoys and that does make me feel better knowing that she will have a happy day. Did you see what I said there? "it will make ME feel better" I am a selfish horribly mother also I guess… And why the eff' shouldn't we be these are OUR children and we want the best for them! Is autism the best we can do for them, no it is not, so I will be trying my hardest to provide the best possible future for MY child. For anyone that doesn't get this point of view could you please state where on the spectrum you or your child is? I honestly believe when you voice an opposite opinion that it does make a diffidence and I would like better understanding from where you come from.

  9. My kiddo is in Respite this week and for the first time in life I feel ZERO guilt about it. The break has been fabulous and something our other children and our marriage needs. 80% of marriages that have a child with autism end in divorce, that statistic is always on my mind. She is so much the center of our universe and schedules and events revolve around her needs that it is so important to take the time to be selfish! We for the first time in 6 years left our kids and went on a kid free vacation in March and just started respite and for us it was the right choice and has been huge!Here's my autism post http://thestarsaligned.blogspot.com/2012/04/light-it-up-blue-pt1.html

  10. Char- it baffles me that you feel comfortable coming to Lexi's blog and telling her to get over herself. It's her blog. Her feelings. Her son. Her life.Maybe you should get over yourself.

  11. I just read this entry to my daughter who says, "I don't feel that it's selfish to want to have a better life for both you and your children. How is that selfish?"She, too, would like a cure. Her daughter, my granddaughter, is perfect just as she is, which is high functioning but way behind her peers. She is a six year old with the social skills of a three and a half year old.We love her deeply but would love for her to have an easier time in the world. We would love for her to be able to be mainstreamed and not have the anxiety that keeps her from that. Cure? Yes, please.

  12. I have to say that I don't really understand this. Maybe I'm too new to Autism, so just ignore me if I say something stupid… I can understand an Autistic person not wanting to be "cured". In fact, most people will resist change, especially if they are afraid of what that change would mean for them or for their lifestyle. Change is unknown, and that is scary in and of itself. That said, IF it's possible for Autism to be cured, why would ANY parent not want that for their child? Being cured of something means fixing something that is wrong, restoring health, treating a disorder that is, obviously, treatable. We know the symptoms of Autism are "treatable", and we treat to help improve the lives of our children. We DON'T know that Autism, itself, can be treated or cured. If, for example, we replace Autism with Cerebral Palsy… with something we KNOW there is no cure for… then things change… we stop wishing or hoping or dreaming of a cure and start concentrating only on simply how to treat and improve the lives of those afflicted by the condition that is otherwise incurable.Until we KNOW that Autism can not be cured, I personaly won't stop wishing or hoping for a cure. That doesn't mean I think about a cure every minute or every day or every week or every month… I don't. That doesn't mean I don't accept my son, Autism and all. I accept him and will be there for him and with him every step of his life as long as I'm alive. However, if that day does come when there is a cure, I promise you I'll be celebrating.

  13. Hmmmmm. Right now as I write this I have just returned from speech therapy for my Autistic 3 year old. He is climbing all over me and I am waiting for his baby sister with a Chromosome disorder to wake up from her nap. She is also starting to show signs of Autism, they do not have the same condition. My mind is spinning, I haven't lived a normal life since the diagnosis almost a year ago. I was going to school half time to finish my Criminal Justice degree so I could have a decent job when my last went to Kindergarten. Now I take one class a semester and I have no intention of going to work. I plan on being a full time volunteer because I really don't trust anyone with my kids. I have been down this road before. I have an eleven year old with Shaken Baby Syndrome. She is adopted and I've had her for ten years. THIS MOST CERTAINLY IS ABOUT YOU! You are the mother and it is you who are orchestrating the care of these kids. I'm not discounting dad, but you are in charge. I truly think whoever wrote this isn't a special needs parent. They would never say something like that. I really get bugged by asshole remarks made to me or any other parent who has had to be a superhero just to get through the day. I found your blog because I needed something funny to laugh at- keep up the good work.

  14. I don't have a child with autism, but you know I adore everything you say…and I've always thought JM was full of shit…Sure, her child is doing better, but how that that make her a spokesperson for autism when every child is different?

  15. Thank you, Bethany, it means a lot coming from someone who knows. I don't think that parenthood means you have to stop being yourself and caring about what you want out of life. I used to. I thought it meant I had to fit into some mold. Ian's then when Casey was diagnose I thought it meant I had to fit into a special needs parent mold. It's not me. I'm a better parent if I allow myself a little selfishness.

  16. Ashley – I appreciate the sincerity of your question so I want to give you my personal reason why I do not want a cure. But, first I want to say that just because Lexi and I are in different places on this issue does not mean I am here to say she is wrong. I think we are two different moms, with two different sons, on different journeys. I am not interested in telling anyone how they should think or feel on their journey. I respect that she has the guts to share her feelings so honestly. I believe when we share so honestly we reach and support others who need to hear they are not alone.So, back to the question. A bit about my son- he has aspergers. His delays are mainly social, but those are quite profound, he gets teased a lot and not many kids really want to be his friend. When he is in a bad place he can also be extremely aggressive. He takes medication to ease that but, it doesn't stop it.However, I believe the wiring of his brain that brings us aspergers also gives as much as it has taken in his case. He has gifts in math and science, he has the most amazing visual memory, and he has pretty astute observations of the things people do. I really do learn from him many days. I don't know of a way to cure him of his hardships without stealing his gifts. We will work both to help him understand what the world expects from him and simultaneously to help the world see that we are not all the same and that's a good thing.He is a whole package, just as he is. I hope that answers your question.

  17. Your question isn't offensive at all. I don't get it either. I think for some, it's like a super power. If the trade off for having a superior memory or savant ability is having autism, it's worth it to them. Some people who have autism like themselves the way they are and don't want to change or feel a need to having what others see as a disability 'cured'. What I'm trying to say here is that's fine for them. I dont know if Casey will ever get to the point where he's even able to fully grasp that he has autism. Right now he'll say it, and that's news, but he thinks of it more like a shirt that he wears. I can only dream to have him to be able to be functioning enough to say that he's okay with his autism. Our reality is not there though. Does this make any sense? When I get home I'll dig up some blog posts written by adults with autism. I've read several and they are fascinating and compelling. I can't make th argument for them. And they are not wrong in saying that they don't want to be cured. To me, that's awesome. Where I get mad is when it's made into a blanket statement that all people with autism should not want a cure.

  18. Ak! We were responding at the same time. I'm on my iPad at a hotel, so I'm super slow. Thank you for answering that question for me. Like I said, I cant make that argument and what you said was perfectly put. Charlie is lucky to have you. And you are to have him. I hope one day i will be able to see the good outweighing the hard, like you do. And it very well could just be a matter of perspective.Thank you so much for your comment. I really really appreciate your point of view.

  19. Stopping by from PYHO – This is a tough one for me. I go back and forth and I try to see things from both sides. And I respect other people's opinions. I'm not going to judge another parent for how they feel. I don't hate autism as much as I hate dealing with the system. Because the system is what really sucks. Fighting for an appropriate education, fighting insurance companies, fighting with school districts who want to dictate what's best for my kid because they skimmed through his evals. Ignorance also sucks. I wish a lot of what you wish too. I wish for simple stuff – like asking what he had for lunch and having him tell me. All those little things so many parents take for granted. And – Jenny McCarthy annoys the crap out of me. Lisa

  20. You have the right to feel the way you do, plain and simple. The whole point of PYHO is to be able to say those things and not be judged. I was horrified by the first commenter who said it isn't about you… WTF? Everything that affects our kids affects us.

  21. I feel the same way abot Cerebral Palsy. There are so many CP moms that say that they wouldn't change a thing and that my son doesn't need to be cured. But if I could take away his CP I would in a heartbeat. He's brain damaged and it SUCKS! I hate his struggles and I would love for them to go away.

  22. I have been chided for saying the same thing. If we find the causes, we can prevent it; if we find a cure, we can end it. The woman tore me a new asshole for saying it. And you know what? She doesn't have to live with a child with autism and I do. I don't think there's anything wrong with having strong feelings about the subject either way, but when it comes down to it, lots of people NEVER have to go through what we do on a daily basis. It's ok to need a break or to want time for yourself. It's ok to not want your child to struggle through life.

  23. I've never really heard the term "mom crush" but I like it. I like that someone has a mom crush on me after reading my blog. I'm usually just afraid that they'll think I'm some narcissistic wench, like the first chick did. Or does. I don't even care. Anyways, I was reading these comments to my husband to show him how supportive everyone was after that first person commented. When I started to read yours I started to sob. Like the ugly kind. We stopped wrapping Casey's gifts a long time ago. He doesn't like it. In fact, for his birthday, we take him to Walmart and he picks out his gifts. Makes us feel like shitty parents, but he LOVES it. Nothing is normal. And that sucks.

  24. Colleen, I can't even begin to imagine what you're going through. Same spectrum… but SO different. You've been through more in your life already than most go through by the time they're 3x your age. And I'm glad you can get away and not feel guilty. Because you're taking on the world, and you need some time to recharge.By the way, your "Dora" is BEAUTIFUL.

  25. Hey Lisa! I totally read your blog! I got all excited when I saw that you commented. The system sucks. It sucky sucks. It's amazing to me how much easier it is to get services (still not easy though, it's like they make things purposefully hard no matter what) for my daughter with Down syndrome than it is to get services for Casey. He's the one that needs them the most. I'm the one that needs respite from HIM the most. Abby is easy. Right now I wish that Casey could control the volume of his voice. EVER!

  26. I guess if I pour my heart out in such a public forum, I'm leaving myself open to such comments. And really, people can feel whatever they want. I didn't write this post FOR anyone besides me. I needed to get it out. And that's what PYHO is for, right?!

  27. I really do hate it when people say, "I love them just the way they are and WOULDN'T CHANGE A THING". I know it's the politically correct thing to say, and it's what people EXPECT us to say, but it's bullfreakingshit. If you like them just the way they are, why get services? Why try different medicines? Why do anything besides let them watch TV all day.aaaah shit. I actually do let my kids watch tv all day. They just don't. Because they're jerks.

  28. If anyone really has the guts to say that to me in real life, I'll effing drop my kids off at their door. Good luck, lady. They'll take it back.

  29. Ooooh, I HATE it when people tell me that God is trying to teach me something through Danny's autism. So, so hate it. Sure, I am learning a ton. And yes, I am probably a better person from it, but surely, God, in all His wisdom could have figured out a way to teach me these things without making my son take the fall for me. Ugh!

  30. I have no idea what it is like for you or anyone else with a child/family member with autism. I do know how frustrating it is though having a child with special needs and others acting like there is a better way or you aren't doing enough or doing it right. I appreciate you raw honesty and I think others do to. It is nice to read a mom be honest about how she is feeling concerning a topic that naturally invokes controversy. It helps other moms realize they are not alone in the struggles. Everyone is a little selfish but I honestly see it more as a mother wanting the absolute best for her child!

  31. I'm pretty damn sure that when a mother has to readjust everything about her life to accommodate her child's special needs, it IS about her. Anyone who says otherwise doesn't have a clue.

  32. I don't want a cure for my kids who have Asperger's. They're brilliant. Their perspective is so different from the norm & that is what enables them to be as amazing as they truly are, and that perspective comes from having a brain that is wired differently from the norm.I would LOVE to have a cure for my moderately & severely-autistic children. Omigosh, to enable them to have a life that isn't consumed with stimming, sensory issues & the struggle to make basic human connections? Yeah, sign me up. I'd be first in line to get a cure for them.I personally think the people with autism who are online ranting at people who say they want a cure are obviously high-functioning enough to not NEED a cure. If they are writing (typing) coherent sentences, expressing their thoughts & interacting with others, then they're fine & I agree that a cure isn't necessary for them. But for those children/teens/adults who are so severely autistic they are screaming when taken out in public, pulling their teeth out or breaking cribs with their head-banging? Yes, they NEED a cure so they can get out of that horrible world & take part in the one the rest of us inhabit.

  33. Lexi: No smart ass remarks from me today, just a completely and utterly sincere thank you for writing this. We've had a shitty couple of days, and I this was just what I needed. My husband and I were talking this morning after a brutal school drop-off, and he asked me: "If you were handed a pill and told, 'This can cure autism,' would you give it to" our daughter? I vapor locked. I don't know. I share your perspective — I've literally had a nervous breakdown, had to take a leave of absence from work, started therapy and am taking medication to keep under control the anxiety and worry and fear I have about my ability to give my daughter (and son, who too often gets forgotten in this mix) the best possible life without imploding my marriage, losing our home or excommunicating family members. The impact of raising a child on the spectrum is very real and very tangible no matter how the parent views the diagnosis on the love/hate side of the equation. But, I get — even share? — outrunningthestorm's perspective, too. What if I gave my daughter the pill, and it changed all the things I love about her so very, very much. Would my life be "easier" or just "different"? I don't know. But, what I do know – after reading this – is that I am not the only one who struggles with or ponders this question, and reading what you wrote inspires me to keep looking for answers. I am sending you a virtual hug filled with very real gratitude.

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