“When he’s older and doesn’t have autism anymore…”

I haven’t stopped thinking about it.  Keegan, my 9 year-old, said something a few days ago.  Something unexpected.  Something that caught me off guard, then made me a little sad, then made me shamefully wish for the impossible, then made me snap back to reality, then made me think.  A LOT.  Funny how 9 year-olds, although full of attitude and sass, can unintentionally give you some much-needed perspective.

He recently got his first yearbook, and he’s very proud of it.  He takes it to school every day because he and his friends like to look through it together.  I mentioned to him how much fun it will be to look through as he gets older.  He told me, “Maybe I can show it to some of my relatives, like Grandma and Grandpa, and my cousins.”

And then he said, “And when Easton is older and doesn’t have autism anymore, I can show it to him.”

I felt a knot in my stomach.  “Easton will always have autism, Keegan.”

“Oh.”

“But, you’re right, when he gets older and can understand it a little better, you should definitely show it to him.”

And that was the end of the conversation.  It was 6:30 on a Monday morning (deep thinking should not be allowed at that time, on that day). I needed to finish getting Easton ready for school and head out the door.  But first, I stepped into the other room and quietly told the Hubby what he said, then realized I was choking back tears.  I swallowed them, took a deep breath, and went about my day, his words in the back of my brain: “When Easton is older and doesn’t have autism anymore…”

Throughout all the informal, spontaneous chats I have had with Keegan over the last couple years about his brother having autism, I had never thought to tell him these five, very important words: “Easton will always have autism.”

We will help him succeed, we will help him communicate, we will help him learn, we will help him be a kind-hearted, funny, compassionate friend to others.  But his autism will never be gone.

But, why wouldn’t Keegan assume that based on things I have told him?  “Your brother has autism, which is why he needs extra help from teachers and therapists.  We’re all trying to help him learn.  We’re all trying to help him talk.  We’re all trying to help him understand what’s going on around him.”  In Keegan’s mind, I was saying “we’re helping him get better,” which to a 9 year-old, probably translates to “we’re getting rid of his autism.”

I have wondered to myself, “What would Easton be like without autism? What if, one day, he just…grew out of it?”  

Am I ashamed that the thought has even entered my mind?  A little.  But here’s the thing.  Doesn’t every parent, everywhere, wish their child didn’t struggle?  Doesn’t every parent want their child’s life to be easier, free of bullying, free of communication barriers, free of dirty looks, free of judgement, free of hardships?  And, what if it is because that means life would be slightly easier for us, their parents? That it would mean we would worry slightly less about them and how they are being treated and how they get through their day and what their future holds.  That sometimes, I just want to be able to ask him “How as your day?” or “What did you do today?” and for him to be able to answer me.   That when I say “What’s wrong?” — I want him to be able to tell me.  Is that so horrible that we’re not allowed to think or say it?

There are people in the autism community who make parents of autistic kids feel ashamed and guilty for wishing their child didn’t have autism.  Autistic self-advocates who scream “THAT MEANS YOU HATE US AS PEOPLE!” and “YOU HATE AUTISM? THEN YOU HATE YOUR KID!”

Well, I’m calling bullshit.

I can’t speak for Keegan, but I heard disappointment in his voice.  In his “Oh” after I told him Easton will always have autism.  Guess what?  He’s allowed to be disappointed by that.  He sees kids every day, talking and interacting and joking around with their brothers or sisters.  He knows his brother is different, and he’s proud of that.  But, he also knows he doesn’t have the same type of brother that so many of his friends do.  They don’t lay in their beds at night, laughing at gross, immature boy stuff.  They don’t tell jokes to each other.  They have never had a real conversation.  Keegan wants that, I can tell.

I think he was looking forward to the day when his brother wasn’t autistic anymore, so he could do more with him.

And those are really legitimate feelings to have.

I wonder what those same guilt-inducing autistic self-advocates would to say to my 9 year-old?  “YOU’RE DISAPPOINTED YOUR BROTHER ISN’T GOING TO OUTGROW HIS AUTISM?  WELL THEN, YOU MUST BE DISAPPOINTED IN HIM AS A HUMAN BEING!”

Here’s what I know, for me, in my life.  Autism sucks sometimes.  I have said the words “I hate autism.”  I have never uttered the words “I hate Easton” or thought “Easton sucks.”  I believe I am completely allowed to have those feelings, in those moments, just as I am allowed to be frustrated beyond belief with Keegan’s attitude or talking back or not listening, or whatever it is, that, in the moment, makes me a human being who is tired and irritated and at my wit’s end.  I know that both my kids drive me absolutely batshit crazy sometimes.  And if you’re a parent and you say your kids never drive you crazy, you are lying.  As in, your pants are on fire and they are hanging from that telephone wire.  You are a liar.  I know that when Easton is driving me crazy, and the things he’s doing that are driving me crazy are directly related to his autism, I’m allowed to say “autism is driving me crazy right now.”

I know that autism is fascinating and heartbreaking at the same time.

I also know that if Easton didn’t have autism, he wouldn’t be Easton.

I just can’t even envision it.  I would miss him.  A lot.

And Keegan is learning more things about real life and struggles and hardships and patience and forgiveness and compassion than any text book or any standardized test could ever teach him.

He’s learning how to play with his brother, who sometimes isn’t the easiest kid to play with.

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He’s learning how to stop and feel the water.

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He’s learning how to lead.

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He’s learning how to be kind and patient.

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He’s learning that normal is overrated.

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And he’s learning how a sense of humor, above all else, will get you through the crazy moments.

photo (1) copy 76

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48 thoughts on ““When he’s older and doesn’t have autism anymore…”

  1. I love this. I wish everyday my son didnt have autism. Im not so politically correct. I love my son. Yes, just the way he is but if genie showed up tomorrow, that would be my first wish…that my son would be healed. (his autism is caused by prenatal brain damage). If anyone thinks differently then they’re lying to themselves.

    • I’m sure it makes your kid feel super-duper loved that you really, truly wish an integral part of him (the autism, which literally cannot be separated from him) would just go away. That your fondest wish is for a completely different kid.. a non-autistic one. It’s certainly an interesting take on “unconditional love” (particularly when combined with denouncing all autistic adults who say it’s seriously hurtful to hear parents wishing away an integral part of their supposedly beloved child. Which, again, you’re entitled to do since it’s a free country, but, um, charmingly overlooks the fact that there is a 100% chance that your autistic kid will become an autistic adult).

      I’m also guessing that it is not unlike, say, trying to “pray the gay away” from a kid, if you happen to belong a religious denomination that denounces homosexuality… and that the much-ballyhood “love the sinner, hate the sin” approach probably doesn’t make that kid feel especially loved or accepted, but, hey, it’s a free country. Let a thousand flowers bloom.

      • I’m fairly certain that she had a long dissertation in her article about exactly how short sighted the comments you brought up just were. Maybe you should read it again, hmm?

      • Wow, your ability to take such an heartfelt sentiment and twist it into callousness is amazing. This took courage to put out there, and I’m certain that it is this type of narrow-mindedness which so frightens the author. Homosexuality isn’t an ailment, so a better analogy would be perhaps Down’s syndrome, dwarfism, or any other life-long illness which affects the actual health and well being of the person in question. Would any parent not wish to take pain and suffering from their children, given that power? This mother does appear to love her child unconditionally, hence her sadness that he will spend his life working twice as hard as “normal people” to be maybe half as “normal”, if he is lucky and has a mother who tries her best every day to teach him as much as he can learn about himself and the world around him, including the myriad thoughtless, uninformed people he will encounter all of his life. I am curious, do you have an autistic child? Have a blissfully ignorant day.

      • Are you serious? Did you even read what she wrote? That’s EXACTLY THE OPPOSITE of what she wrote. Go read it again and then take a long, hard look in the mirror. Wow.

      • Carlee, you are a troll of the worst sort. Since your idiocy is an integral part of who you are, I’m going to pray for a completely new commentor.

    • Julie, I understand. We deserve a safe place to be honest without judgement. Our children aren’t the apitting image of a dream we dreamed from their conception. They struggle. We struggle.

      Wishing autism would be gone IS NOT saying you hate your child. It’s saying a lot of our worries for the unknown would be gone. Its saying that those who cannot look past the autism to see the child for who they are wouldn’t have a reason to do so anymore. It’s saying those tears of grief, and frustration, and worry about the right thing and just plain old freaking exhaustion would be gone.

      Carlee, I don’t want to start an argument. I wish you the best in your life, but truly your statement helps no one. And if my super-duper loved child couod read any of what I wrote, she would agree. It is hard for her. It is hard for me. It is heartbreaking that her heart is broken by ignorant people everyday who do not understand her. And I disagree that autism IS her. Because she is more than autism.

  2. I totally get where you’re coming from. I’m a single full-time working mom of a 4 year old with mild autism. My son doesn’t have any siblings but my son is my world and he is so unique in his own way that I would not want to change a thing about him but there are days too where I think about him outgrowing his autism. That’s not being selfish, that’s just being a loving parent.

  3. If ever I needed this message it was right now! I sit here with tears in my eyes saying thank you….

  4. Holy crap. Didn’t even realize I was crying until right now. Of course you don’t want your son to have autism. What parent wants a hardship for their child. My daughter has a mild case of CP, and although the journey we went on to “fix” her changed my life in a profound way, my heart aches for what she has/had to endure. That is what being a parent is about….loving your kids unconditionally. You just rocked my world with that post. Your sons are so lucky to have you!

  5. I really love this! I have an 8 year old daughter who is NT, and our son is 6. One day I was talking with a friend about how I feel guilty about her getting the short end of the stick so often. She told me, “Well stop it. Stop feeling guilty. Don’t you have enough to deal with already that you don’t need to pile guilt on top of it? This is her life. Sophie will adjust. She’ll grow up being a kind, compassionate person. She already is.” And she is absolutely right.

  6. Pingback: “When he’s older and doesn’t have autism anymore…” | Me, You, Wine, Cheesecake, and Autism

  7. Amen!!!Thanks for this I needed it. I am a grandmother raising a sweet grandson who is 11 who has autism he can be the most loving child one min. and losing it the next. It is heart breaking and I hate seeing him struggle.

  8. Just because Easton has Autism doesn’t mean he’s not capable of learning the things that are challenging to him today. He needs extra help precisely to learn how to cope with the challenges with sensory input and social situations he likely faces. He may always have Autism, but he won’t be the same 4-year-old with Autism for ever. With help for his challenges, he’ll no doubt grow and thrive in such a loving family. His path will be different, but that doesn’t mean he won’t understand how cool the yearbook is to Keegan when he’s older. Be sure to teach that lesson to yourself and your family. And you may find as he gets older, Easton can do some things remarkably well that you struggle with… Thanks for sharing!

  9. I am with you! I love my son but if one day he was to wake up and magically no longer have autism I would not be disappointed about it. Autism is hard and to many high functioning autistic’s they stand on defense because they had hardships as children and they want to be heard, which I COMPLETELY understand, but I am sure if you ask any of their parents they too would have said that they sometimes wished their child didn’t have autism. Wishing this shows the depth of your love for them. You want to protect them from a world that does not understand. There are some good things that my son can do but I feel those things would still be there regardless of autism.

    I loved your honesty!

  10. I’ve been waiting for someone to say this. My son, who is 15, doesn’t define himself solely by his autism and is getting disheartened by his own autism community, who insists that there is something wrong if he doesn’t. He sees it as a natural part of him, but says he has talents and parts of him that aren’t related to his autism.

  11. When my son had croup, I wished he didn’t have croup. And when he broke his arm, I wished he hadn’t broken his arm. And when he had 2 ear infections and a fever of 103 and was screaming his head off, I would have given anything to make it better right that instance and make it go away. I never did enjoy hearing some bully tripped him, knocked his books out of his arms, stuffed him in a locker, or convinced all the kids to leave the lunch table my son was sitting at and make him sit alone. No, I never enjoyed watching my son hit himself in the head and call himself stupid when he couldn’t read a book. And now that he’s a man, I do not enjoy the fact that he just can’t keep friends, he can’t find a place to fit in, he can’t keep a job for very long, and he can’t keep a relationship with any women he loves for more than a year or 2. My son is Learning Disabled and has on undiagnosed social disorder – which we now believe is Aspergers. Do I love my son?????? OMG YES YES YES, with my heart and soul. Did I ever enjoy seeing him suffer, physically, emotionally, or socially??????? HECK NO! ALL parents wish better for their kids, that is what parents do. Why would it be any different if the mountain our child has to climb is ASD?

  12. I understand what you’re saying. But the reason autistic adults say what they say is because, wishing the autism away to make life less difficult and painful is exactly the same as wishing all children to be white males. To have a perfect privileged life which many others do not have. Being autistic is who he is just as much as I am an Asian female, vulnerable to racism, discrimination, bigotry, masochism, sexual violence…. Do you see the correlation here? I can no more wish a non-autistic son than I can tell my daughter it’s too bad she’s a girl. I hope my perspective helps you see the argument? Thanks for letting me share!!! 🙂

  13. Liked this a lot and have written a very similar thing recently. I believe that feelings about autism depend on so many variables at any particular to time , in particular the exact nature of the autism in question and the resources available both practical and emotional. As a NT ( I think! ) autism dad I think I have the right to express my emotions and feelings arising from living with autism and how it affects all facets of our lives. It does not mean I am discriminating against those with autism. I am a firm believer in trying to be honest about emotions and feelings and autism sure can be a roller coaster ride for all those affected. Thanks for sharing your thoughts and feelings.

  14. Really nicely stated, and your boys look like they are building a great relationship. As for those who denounce your feelings, they are just feelings. You can’t help them, and not talking about them only adds guilt to the mix. As for those who compare autism to other marginalized groups it simply isn’t the same thing. Being gay may have socially constructed challenges, but it is not a disability. Autism is. (I wrote about this a little bit http://www.wantapeanut.com/2013/04/mourning-autism-or-why-being-autistic.html)

  15. you are all missing the point about autistic adults. The same happens in the deaf community. It is not that hard to understand that when you have an identity that you identify with, it is hurtful to think other people don’t want you to have it. As a parent you feel that autism doesn’t define your child and it is only one part of you and that is true on many levels. As someone who has undergone a lot of struggle, you often develop an identity around that struggle (survivors is an identity claimed by those who’ve experience trauma, etc.) and that identity becomes you, even if not all of you. It is perfectly compatible to say my son is more than autism and an adult autistic to say I am autistic. The gay analogy is perfect here. you can think of gay as same sex attraction and only one part of you or you can think of being gay or queer as being who you are. Those people who think of it as merely one part of themselves may wish they could get rid of that part and many parents of gay children have wished their child was not gay so they wouldn’t suffer. But if being gay is your identity, the fact that others wish you didn’t have it is experienced as hatred whether or not you intend it. The same is true of autism. if a child grows up feeling/hearing/thinking that everyone wants them to be different, they will hate themselves. if they grow up thinking you wish they didn’t have it, they might agree with you if they also conceive of it as a disease. But if, like so many people with chronic issues, start to think of themselves as autistics (as an identity rather than as a disease), they may think that you wishing they didn’t have it means you don’t like who they are (that is what an identity is “who we are”). Would it be okay for me to say I wish my son wasn’t black because as a black boy his life will be so hard? Or should I teach him to feel proud about it, claim the identity, and find the strengths in it while I work to protect him and arm him with tools to protect himself from all the downsides? If I went around the web posting about how much I wish my son weren’t black, I’d be skewered by African Americans who felt I was racist and hated my son and such. Yet we autistic parents go around saying the same thing and then get mad at autistics for being upset. It only works if you think of autism as a disease state and therefore something to get rid of like any infection. But that conception will hurt your child in the long run. Autistic adults just want you to understand that. They were/are hurt when their parents send that message particularly after they embrace it. Should you teach your child to continue to see it as a disease becasue you do or should you teach them to embrace it like an identity that they can feel proud about? I fall on the side of neurodiversity is good for society and so I will teach my son pride as I did my daughter and as I’m only learning to do for myself because I grew up being wrong. I refuse to teach my son that anything about him is wrong. do I wish the symptoms were easier on him at times? yes. do I wish he was not neurodiverse and wish he was neurotypical? no. we neurodiverse peoples understand and see things that NTs do not or struggle with. Do I wish our bodies were kinder to us? yes. but you can’t continue to argue with each other when you are not even talking about the same thing. one group is talking about a disease and one group is talking about an identity. Instead of feeling justified in your emotions that you feel the need to tell us all about, perhaps it is time to think about how you want your child to think about his autism? if you want her to be proud to be diverse, you have to accept the concept of autism as an identity and you have to respect it. You can’t hate the sin and love the sinner as we’ve said repeatedly to GLBT folk, because all they will experience is the hate, they’ll miss the love. Just think it through without staking out a side and defending your side at all cost. I promise you, we understand your frustrations, but we interpret them as being about us. not the message you want to send.

  16. I have 3 boys who are autistic, my oldest is an aspie who used to cry and wish he wasn’t, but he’s learning to love himself, and enjoy his uniqueness. Somedays are so hard I wish they were all neurotypical, but those moments pass, the poop is not smeared on the walls anymore, and I am so grateful for who they are. They bring so much joy and light to the world. We should never feel bullied into not sharing our feelings and supporting each other. There will always be people who feel the need to be nasty and mean. Ignore them. Great article, thanks for sharing.

  17. I suffered a nervous breakdown at work 1994 that necessitated psychiatric intervention by hypno-regression therapy which uncovered that I’d been diagnosed with childhood autism in infancy and autistic psychopathy in my teens, which was the name that Hans Asperger called the condition that now bears his name, Asperger’s Syndrome, but that I had self-induced amnesias twice since then, so I did not know that I had the condition, and by the time of the hypno-regression therapy, not even the guy that diagnosed and treated me could recognise any autie or aspie symptoms in my behaviour for the entire 12 X 2 hr. sessions that I had with him. This finding was confirmed by my directors at work and by senior peers who examined my competence a couple of years later, and by my NHS Family Doctor and the AMH specialist she asked to examine me, and a Psychologist the year before I retired and again by NHS Family Doctor and the AMH specialist the year before last. The autism itself didn’t go away because I suffered a relapse into one trait that I kept secret and which I will mention in a moment. But the point is that it can appear to go away to the extent that it isn’t even recognizable to experts. This was borne out by a small research project into whether modern treatments are effectively reducing the severity of symptoms and which found that in every case under scrutiny, the symptoms so reduced in severity that a diagnosis of autism spectrum disorder was no longer applicable as they were so mild that they fell below the threshold of severity that could be labelled disorder. I know stuff like this because I have Google alerts set up on my computer to inform me of every new webpage every day containing the word autism, and the word asperger. Regarding the trait that I said I regressed to, it was what is known as ‘suicide ideation’ – I had gotten it into my head that my purpose and meaning in life had come to an end and I wasn’t needed here any longer, so I thought about and made plans to kill myself to save the Grim Reaper having to do it. That was in the year 2000, six years after my nervous breakdown and the consequential diagnosis and treatment. We auties and aspies don’t think about life and death like the rest of you – we see them simply as doorways to and from life on earth from and to life in heaven, just tools of our reincarnations from spirit to mortal and back again. I say this because a recent research report drawn to my attention by my Google Alerts confirmed that we do suffer a greater propensity to contemplate and attempt to kill ourselves as a reaction to major changes in our routines and the way we perceive our worlds and our place in them. I never once contemplated or attempted to kill myself during the 35 years I was ‘on another planet’, but what I did do was switch my memory off twice when I decided I had to change to cope with a change in my environment. The first was a head injury that prevented me from going abroad to take up my first post after qualifying and the second was the birth of my one and only child that necessitated my keeping my job in that county for at least as long as it took for her to grow into a young lady and get a university degree. Nowadays there are hypno-therapy methods that manage the switching off of memory so the incumbent is not left without an identity as I was. Three practitioners do this over the internet using mp3 recordings. They are Dr Joe Dispenza, Dr Robert Anthony, and Dr Steve G. Jones. The methods they use are truly transformative and I have no hesitation in recommending their recordings to help reduce the severity of the habitual symptoms of autism and aspergers, and replace them with more desirable habits, like enhanced self esteem. I hold great hope for the future of auties and aspies with all this wonderful new kit becoming available cheaply and globally via the internet.

  18. Thank you for this! I have 3 boys (12,10 & 7) and my oldest lives with autism. I have thanked my middle son so many times for his patience and knowing when take the lead when his brother can’t. At 10 years old, he has learned how to be kind and considerate….everything you wrote! He even helps teach my 7 year old how to be the same. Thank you for putting into words how I and I know so many other families feel living with autism.

  19. Love it and Well said. It is natural for kids to think their brother or sister will just grow out of Autism. It is also natural for them to have so many questions. Even us adults have them. Life alone is a mystery. Nothing wrong to second guess, or just wonder “what if”. I couldn’t express it better myself. My husband and I have gone through all the same thoughts. I always felt, it’s healthy! It is how we process, how we understand and how we cope with challenges. I feel it makes us stronger, appreciate more and love more!

  20. I don’t think I have anything brilliant and unique to add to these many different perspectives, all of which make so much sense – even when they are mutually contradictory!?! – but I did want to say I love your writing and I was so WITH you throughout reading this. MAYBE the “pants on fire” tangent was my favorite part? Or your profound honesty and willingness to e generous with your struggles AND giggles!
    Thanks and Love,

    • Perhaps I should clarify by noting that I am on the spectrum myself – and have come to be comfortable with the truthS that sometimes being on the spectrum (or having a child on it, as I also have) has its down sides and it has its down sides too. Just like anything. When I think about the progress we are making towards neuro-equality and -diversity-acceptance I still think that we will NEVER all be the same. So…what makes us different (taller, shorter, gay, straight [or WHATEVER as these younguns seem to be evolving toward…], autistic, artistic…) will never make us the SAME, right? But if there’s real equality then we should actually then be MOST able to be very open about the pluses, minuses and NEUTRALS of stuff…

  21. And now a view from the Autistic side. You shared yourself, so I’m hoping I’m going to be able to do the same. I have a perspective to offer that you’d think more parents of Autistic children would want, I’m an Autistic Adult. I think maybe it’s just not siblings that don’t truly understand/accept Autism is lifelong…

    After reading this and some of the comments for the most part made me feel pretty worthless, and so I would imagine that’s where your son gets the notion from that his brother isn’t good enough as he is.

    You (the ubiquitous you) are my biggest barrier, but seem unwilling or understand or accept it. A bunch of people who do not have Autism saying how it should be for us because someone in your life is (not has, IS) Autistic. There’s a huge difference and most NT’s are saying it incorrectly which allows them to separate it the way they do.

    We are right here you know. We know what you’re saying, hear the “oh poor you, little Jimmy is Autistic that must be SO hard on you.” We hear it even if you think we can’t, we feel it, it makes us meltdown, makes us hurt. The problem is you (NT’s) rule the world and make choices for us that you have no business making while you go on and on about how hard it is for you. (said with the acknowledgement that it is indeed difficult on everyone)

    You (ubiquitous) blame vaccines, aspirin, drinking water, the Easter bunny, whatever you can just so long as you don’t have to accept that you didn’t get perfect, you got reality, you got hard work. That’s life. Autism is not separate, it is ME, your son, millions of us. We don’t need to be stopped, we aren’t an epidemic, we don’t need to be cured. We just want to be accepted. When you say things like stop Autism, you are saying that you reject the process that created me. Would you look me in the face, and say that?

    I am your sons voice, not you. Don’t bristle at that, it’s not meant for that reaction, it’s meant as a bridge from an Autistic adult to the parent of a child on the Spectrum so we all better understand each other and *our* (Spectrum) voice becomes truly ours, not that of of our advocates only. Does this make any sense at all? It’s something I’ve been working at getting others to understand for a very long time now. Some do, most don’t. If you truly want to learn to understand your child, you have in front of you an actual opportunity with an autistic adult.

    Damn right WE (not it, we) won’t go away! Turned 45 in March. Have had to struggle for those years, I’d like it to get a bit easier. Please help with that. I know you really want to. There is a massive untapped pool of autistic adults like myself out there, come to us too! Not just each other, branch out. Don’t be afraid.

    • @Patricia,
      I want to say that from my perspective as the autistic parent of an autistic son what really resonated for me in this post – and maybe this is just my interpretation – was the hardness and challenges and burdens of being autistic that come NOT from our children but from the very world of which you speak. I have said ad nauseum on my blog and elsewhere that if it was just my son and me in the world we’d be the happiest two people on earth. I would NEVER change a SINGLE thing about him or about myself (though sure, sometimes, HE would – at the dreadful age of 12) but this NT world and the NT people in it…there could be some changes. PLEASE Patricia do continue to make your beautiful, necessary voice be heard.

  22. Anne-I think you are perfectly justified in sometimes wishing your son didn’t have autism and I think it is natural to pray that some day he will be able to do all he things you wish for him. My mom prays everyday and so do I that some day my son Patrik’s condition will be cured. I would love to not have to worry about him getting sick and to not have to give him all his medications everyday and knowing that he will have to take even more in the future can be very frustrating. Keep praying for miracles-we know that they can happen!

  23. All I have to say as a mom of an 8yr old son with Autism (and a 10 yr old neurotypical daughter) is Amen! And thank you for an honest, loving and awesome insight!

  24. This is so wonderful, Anne. I have a brother with autism and am pregnant with my first child (a boy). I think about the possibility that he could have autism every single day and what that means for our future. I remember my brother’s struggles from childhood well, and have seen those change and develop into different things now that he is an adult. Autism is hard sometimes, and anyone who says otherwise is crazy.
    My favorite part of your post was the ending, though. I am so thankful for the lessons my brother taught me that I would never have learned otherwise. I know he changed and shaped my life and me, just like Easton has changed Keegan.

  25. I’m saying it. Autism sucks ass. Currently in a protocol to heal the symptoms of Autism. My non verbal boy is now talking. No more stimming, total eye contact, responding to questions. My goal is to say he doesn’t have autism anymore. My glass is always half full:)

  26. Pingback: I hate autism (but not my child) | lovenlearning

  27. Hi, I came to this blog post via TPGA. I commented there that I think people should be judged on their body of work, not one post, not one paragraph. I was going to make a subsequent comment there, but comments were closed at TPGA. So, I’ll make it here, where comments are open. :-). Thank you for keeping comments open.

    I liked so much about this piece. I liked the idea of looking at family members through each others’ eyes. I liked the idea of discovering your other child needed to know more about autism, and how he was confused. We had a similar conversation in my family with our other child. Different points of view are a good thing, and how people relate to one another in a family can be key to a good life together. I think this is true in online life as well.

    I decided (for me) to stop using the H word and autism in the same sentence, verbally or in writing. I don’t think I said it a whole lot anyway. I think sometimes we parents use it as shorthand for “I wish my child didn’t struggle” and a lot of other expressions. We can acknowledge our feelings of hurt when we see our child struggle. And we can use the necessary words to fully express that. I stopped saying it because people who are autistic that I respect said it hurts to hear that. I don’t want to knowingly hurt people, any people.

    But I will not pretend things are not hard when they are. I will not stop wishing that things were easier for my child or others like him. I will not pretend that at times I have struggled mightily with how to be a good parent. I will not pretend that at times I have been in despair in that struggle. If autistic people struggle, it only makes sense that those who love them have feelings about that.

    I think I’ll post this comment on my blog, as it has now become its own thing…

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