what was wrong with her?

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My beautiful, perfect little girl.
Because I needed her picture to be here.
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There are two girls working the cash register at the farmer’s market. Fresh faced teens, the kind a mother of boys would hope they’d bring home.

They’re well mannered, sweet. I smile at them and note their names embroidered onto their polo shirts – Jamie, Jennifer.

As Luau hands them our items one by one, I manage Brooke. She’s antsy. She’s ready to leave. The acoustics in the barn are getting to her.

She flits from one display to the next. I follow in frantic pursuit – replacing the rhubarb that she’s grabbed from a basket, pulling her little fingers from the Saran Wrap around a watermelon, redirecting her away from the flower display – visions of broken glass and flowers scattered across the floor involuntarily extending my Mama-arm.

I kiss the top of her head as I finally wrangle her in toward the shopping cart. She jumps on the runner and peeks into the bag. She is squealing ever so softly.

Jamie and Jennifer both smile at her as Luau signs the credit card receipt. He hands the signed receipt back and we begin to move.I turn back, then back again to make sure we’re all moving in the right direction. Secure that we’re all present and accounted for, I turn to the register – ready to return the smile they’d given my girl.

Jennifer leans in toward Jamie and asks, “What was wrong with her?”

Jamie responds.
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“The little one? Yeah, I don’t know, but something definitely wasn’t right.”
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Jennifer shrugs.
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“She was cute though.
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“Jamie shrugs.
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“Yeah.”
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My smile melts like hot wax.
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What was wrong with her?
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WHAT
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WAS
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WRONG
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WITH
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HER
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The words echo – careening off the walls in my head.
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Every doubt, every fear, every God-damned thing that keeps me up at night comes spilling out and rolls onto the floor with a deafening roar.
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Will she have a real friend? Will she go on a date? Will she know romantic love? Will she hold a job? Drive a car? Live independently? Will she be bullied? Will she understand? Will she go to college? Will she leave our home? Will she indentify with the autistic community? Will she self-advocate? Will she take up the mantle for others? Will she find her village? Will she laugh at her Mama? Will she be happy? Will she be OK?
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What.
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Will.
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Happen.
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When.
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I’m. .
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Gone?
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“What was wrong with her?” she’d asked.
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I gather the pieces, wrap my arm around my girl and hold on with everything I have.
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There’s no explaining, no teaching, no educating, no raising awareness or sensitivity or compassion.
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There’s just holding on.
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This time, it’s all I can do.
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I don’t say a word as we leave the store – not even to Luau. I try later that day, then the next day and then the next, but I can’t bring myself to say the words, “What was wrong with her?”
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I write them instead.
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Ed Note: I’d be grateful if you would take a moment to vote for Diary on Parent’s Magazine  ((<– click there to vote)) and on Babble  ((<– click there to ‘like’)). Please note there are two different nominations on Babble – one as Diary of a Mom and one as A Diary of a Mom. I guess just vote for them both? 
Thank you!
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161 thoughts on “what was wrong with her?

  1. Not a damn thing. She’s perfect and beautiful inside and out. Doesn’t take that sting and hurt away, but she is all of those things. As for the future. It may be different than what you imagined, but she will do it. There is not an ounce of me that doubts that. She will give and receive love. She will. I’ll believe it and remember it for you on the hard days. xxoo

  2. I will work backwards here. A) I voted! and B) I don’t have a clue what to say about your actual blog (which is why I started with the low hanging fruit of voting!) but we’re out here “listening” when you need to write it b/c it’s the way to go instead of speaking out loud. And we love you (and Brooke). And about Jamie and Jennifer – it wasn’t the day for you to educate, etc., but hopefully a deeper understanding will come their way eventually.

  3. I so get this. I think I go through these thoughts and feelings on a weekly basis. I try to stuff them and not contemplate them. The answers are too scary…to much unknown. There is not much to say other than these moments bite and when they bite, they bite hard. I am sorry.

  4. Can barely see through the tears. I really dislike that sentence….having heard it so many times in the past. *Hugs* for all we can do is hold on…..

  5. It breaks my heart. It reminds me of all the times people have made comments about my son. I think my son is one of the most amazing people and so is your daughter.
    I really appreciate you sharing your story, it helps us all know that we are not alone.

  6. As the mother of an 18 year old with AS I can say, it gets easier, but no, it never goes away. There are always days that are difficult, and days when the reality of how others see your child hits you like a brick in the face. It’s so hard sometimes not to throw that brick back. Even now at age 18 I still have the worry of what will happen when I’m not here. In fact I think I worry about it more now, im not getting any younger. I can find some peace in this only in that I have 2 daughters that are older then my son that I know I can trust to take care of him. We dont have any extra money, never have. We have always lived from pay check to pay check barely scraping by. So we have been unable to save anything up for his future after we are gone. Yes, its terrifying. But I trust in God, and i believe in my children. I know somehow it will be ok. One thing i often think back on is he day my son was diagnosed and the doctor said, “Its tuff realizing or being told your perfect child isn’t perfect.” I got so angry at her for that. As I said to her, “You know what, my child IS still perfect every bit as much as any other child, but in a wonderfully beautiful unique way. How special God must think I am to give me such a honor and gift of being this child’s mother. He wouldn’t give that job to just anyone.” I still believe this to be true with all my heart.

    • Robin,

      Once some one asked me if I had, had the chance to morn my daughter’s diagnosis. I’ve heard about this before, but to me, I ask, Why would I mourn. My daughter is amazing and wonderful. I love her for who she is.

      I too look at my daughter as a gift from God, He doesn’t give Children on the spectrum to just anyone. She is my blessing.

      Amy

      • I totaly agree love your child for who they are , their unique ways . I have three year old twins a boy and girl , our little girl has autism but is the most beautiful little girl any mum and dad could ever wish for, treasure every moment, I do.

        elaine

  7. There are no words, Jess. But that picture of Brooke says it all. She is our perfect little girl. Think of how she’s grown and blossomed and how she’ll continue to do so. Not everyone will “get” her but that has to be okay. We “get” her and she “gets” herself. She is such a loving, funny, great little child.

    I love you,
    Mom

  8. oh boy. my first, unedited thought was, “and in part, this is why I am dyeing my hair tomorrow.” To those that say “enough” to the awareness campaigns, I say, “no, not enough…never enough.”

  9. oh…that just made my stomach turn. I get the looks, but we leave before anyone says anything I can hear.
    There is nothing wrong with our kids. Nothing. They are beautiful, incredible creatures who will someday (with their siblings and extended families) show the world just how right they are.

  10. Jess, I’m sobbing like a baby, your concerns are my concerns. My Veronica is 4 and these thoughts haunt me every day. Sometimes it’s so overwhelming. Incredible how one word or one thought can cause such a commotion in our minds. Luckily I choose to believe and remember that there will be more “good” days than “not so good” days. I wont call them “bad days” because with all the confusion, you can lose your focus so easily as to how perfect our little angels really are. The days she figures something out on her own or just stares at me and very slowly tries to ask me a question when just months before she wouldn’t say a thing, makes me believe that there WILL be more “good days”. I’m also lucky to have a live in therapist just like you…her sister, what a blessing in disguise my Julia has been for her twin Veronica. Hard to believe with the 1-110 probalilities of ASD that is always being voiced, that there are still people that dont know what Autism is or can recognize the symptoms. I confess to have been one of them prior to Veronica. Jess you and your family encourage me and help me see things in so many different ways sometimes that I really appreciate. i know down in side you also believe that there will be better days in the future! xoxo

  11. I tell my husband, I grieve every day for my son. That’s what you are doing too. And it’s perfectly normal, but, hey, it’s not what we all wish for every day! It is very difficult to wonder about the future, to know your child is different, but still think in the back of your mind, maybe s/he isn’t too different. Maybe they’ll get a job when they grow up, maybe they’ll have a friend, hell, maybe they’ll even be like Bill Gates! That’s my favorite…my mom says my son will do something great someday! He has done something great – he’s chosen me for a mom and Brooke has chosen you. Yes, there are terrifying moments…. just try to look at the smiles… please, I’d be honored if you’d watch my video… it might bring a smile to your face…our kids are PERFECT….and that includes Brooke!!! Hang on for the minute, the hour the day.

    http://www.youtube.com/user/anelson0808

    • I love your video. You do have a PERFECT family. god has blessed you so much. Don’t know much about AS but some. Was born different myself without my fingers and toes. Dr told my parents I would never walk or be able to take care of myself. they were devasted. and thought many times what will happen to her. what about when were gone. 44 years later Married. i drive, write, type work, In mental health helping those who are less than perfect (so says the world) and who is the world to say. Have you seen the mess its in. There isn’t anything I can’t do. God made me that makes me PERFECT. and that goes for everyone they just forget. Your son WILL do amazing things. People have said to me I’m what ever (handicapable) And I always say you are not you diability. you are Susie, Mary Mark, Kevin, Julia ECT. Used to hate the word SPECIAL but we are special. Born to do special things. amazing things. Look at your son and wonder what wonderful things will you be doing and was sent to do. Not what if’S Why?S. not the what can he NOT do but the things he CAN do and WILL do. Fight the good fight. Never give. My parents didn’t me and they could have because it was hard at times. But they tell me I was worth it. Be Blessed as you are Blessed

  12. I live this every. single. day. I live it in my nightmares. I live it in my daymares. I think about it to the point that I am obsessed about it. Everyone around me tells me he will be fine. Will he? They don’t know. They have no idea. Will he be lonely? Will he be suicidal? Will he feel constant pain being bullied, like he did last year? What is he going to do? What am I going to do?

  13. There is nothing wrong with your angel, or mine or any of the other children. What’s wrong is a society that fails to see the beauty in their differences. Fails to see the smiles when they triumph, the glow when their good days outweight their bad. As much as autism needs to be challenged, so does it’s perception. What’s wrong with her? Nothing I can see

  14. Oh, honey, I’m sorry. I’ve had people actually ask ME that question. In front of Nik. The sting never goes away no matter how much of a brave face I put on. And those thoughts? I can’t go there so many days. xo

  15. Ugh. Ow. So sorry hun. It’s those moments that stir the “what if” pot of anxiety. I get it. I have those same fears and feel that I must live forever. Your girl is perfect, there is nothing “wrong” with her, we know it, and she will know it too. She will find her village. xoxo

  16. Just a few weeks ago we went to the Woodstock Fair, and the conditions there were not great. It was hot, crowded and sensory overwhelming, even for me, nevermind Aidan. At the end of our stay we were sitting at a table taking a break and he just lost “it”. He began making inapporpriate comments, saying rude words loud enough so that the woman sitting with her 2 perfectly behaved children could hear him. I did the only thing I could and said, “he has autism”. She responded in a kind, thoughtful manner and I swear she was heaven sent. To this day I can not remember her words, because the feeling of dread was so huge. I couldn’t hear a thing. But kindness always registers, sadly not enough to take away the pain of what happened. That pain still lingers and I believe it does so for a reason. To teach me how to better a parent to Aidan and by the grace of God I will.

    While our pain maybe different in texture, it never the less is related by the composition of autism. I get it and am with you, every ounce of me. One love DOAM:)

  17. These are the moments that we fear the most, for ourselves and for our children. Your daughter is a perfect version of HERSELF, there is NOTHING “wrong with her”….. Her differences are what make her special and uniquely Brooke. She will be loved for who she is already and for all that she will become, she already is!! These words are little comfort, I can imagine, but they are spoken from the heart…. She is a wonderful little girl and if I can tell that from your stories of her, I can only imagine how it must be to those who are lucky enough to know her… and you! xox

  18. I’m sorry that was hurtful. I do think it gets better slowly, as we as parents start to see what our kids will be like as adults. That image appears slowly, as it forms you then need to help them find the things they need, like social groups and fun and just life. It can be painful, but it can also be joyful when you seeing them finding their way, even if it wasn’t what had originally imagined for your little love. This goes along with the post I was going to write today!

  19. My beautiful boy is still a toddler, yet this is one of the many fears that I juggle as I imagine his future. How will others view his “strange” behavior then? After all, it won’t likely be as “cute” when he’s 14 as it was when he was 3. The thought, the mere thought, of any person not seeing him for the perfect gift from God that I see him as, rips at my soul. The idea that ANY person could ever reject him, laugh at him, or judge him to be “less than” fills me with searing agony.

    He is pure. He is kind. He is beautiful. He is love. This is such a gift. He has so much to teach, but the world needs to see it. Truly, this needs to start in our schools, with our youngest children. We are in such need of Awareness, Understanding, Compassion, and Empathy and you simply can’t have one without the other. As parents, each one of us has a voice and each one of us needs to be heard. For the the sake of our children and for the sake of our world.

    • Your words touched my heart because they describe my 15 year old son perfectly. Pure, kind, beautiful. I am a little farther down the road than you are and it never ends but it gets easier. Always be his advocate, look for his gifts, and pray. We still have issues to deal with with other kids, there are many lonely weekends for my son. BUT, my son’s gift is acting. The first time he auditioned for a role it was the most beautiful thing I had ever seen. He was interacting with his peers in an appropriate way and they were all having fun!! I had tears in my eyes during the whole thing. He has taken that gift and made it what he loves. He is respected at school for his talent and the drama kids have accepted him because they know he is very good. We focus on the positive things and work on the not so positive. Take things day by day and you will get through it. Love to you and your family.

  20. Amen, sister. We get this a lot of places we go- the store, the pool, the park… it was whispered about the adults at last year’s spelling bee, before Joey almost won it. Sometimes people ask it straight out. He looks so normal, then he opens his mouth, and apparently it is all too obvious that “something is wrong.” But it isn’t wrong. “He’s perfectly fine,” I often reply with a smile; and if they seem to genuinely care, I may add, “He’s just autistic. We all have our quirks, eh?”

    Then I go home and cry.

  21. Well there’s a poor choice of words! The girls just don’t have enough real-world time to understand. My hope is that they thought she was upset over something and not (i hope!) the other “what’s wrong with her”. Because we know there is nothing wrong with little loves, just a bunch of different rights.

  22. We’re just starting to get those comments/questions now since my son is about to turn 4. It’s really awful. Sadly, I’m expecting it to get worse as he gets older and it becomes more obvious that he’s different. I’m trying to brace myself for it and plan for come backs but it’s so damn hard and heart breaking. Hang in there. Brooke is beautiful and smart and funny and has a wonderful family and support system. She will thrive. I believe that.

  23. I don’t understand how you manage to put MY thoughts and feelings down every time I read something of yours. It is hard to put my thoughts into words, but I have re-posted things you have written. I keep thinking back to the day you posted about if there was a pill to cure autism. I don’t have an answer for that one either, but I wonder what I actually would do. Today would be one of those days where I would think a bit longer. Not for my own benefit, but to make life easier for him. I am strong enough(most days).

  24. *sigh* You have, yet again, eloquently put into words what so many of us struggle with every.single.day. It hurts…I know that hurt. But the others are right…our kids do great things..and will keep doing great things. They are going to get “there”…and when they do, we can throw our fists to the sky and give a big, fat “nanner-nanner-boo-boo”to all of these moments. Hang tight and keep moving forward. That’s what I tell myself, anyway…

  25. Okay, Jess, I’m flipping this for you. “What’s wrong with her” is quicksand. The question you need to hear – the question that matters – is “What’s right with her?” Start there. It’s a long list.

    To me, it’s all about building on what’s right. (I’m actually in the middle of a post about just this thing… and someday , I might even finish it.) But, really, when we focus our energy exclusively on remediating what’s wrong (and I KNOW that you don’t), we’re spending a lot of time tilting at windmills. When we build on what’s right, the foundation is solid and the possibilities are limitless. When we build on what’s right, our kids will become the best of what they are, even if their lives end up looking different from the lives we think we want for them. We may discover that THEY want different things for themselves. And there’s nothing wrong with that… right?

    And also – I love you. And I love, love, love Brooke. The cashiers were insensitive and thoughtless. And wrong. I’m sorry it hurt so much.

    • I want to echo mom-nos. I see the “red flags” in my boy… of course, how could I not…. but I also make a conscious effort to see all the “green flags” he has. Where he has made progress. What he excels at. There are no mistakes… ever… just developmental steps and practice practice practice on how to grow and live in this world. I work really hard to compare my boy not to the rest of the world, but to how much progress he has already made. I compare him to him. (It is super hard tho…. and I have those exact same moments) So ask yourself: what did she do that was sucessful? Sounds like, in the noisy crazy environment, she kept it together? Didn’t fall apart? Engaged with the enviroment as she flilted around, made in an effort to stay organized enough?

      Of course those girls have no idea the amount of effort it took for Brooke to stay together… how could they? They have zero perspective. I guess that is why we must educate and advocate. So that next time they see a child (or adult) like Brooke (or my J-man) they will pause and reflect. And realize how strong and amazing these kiddos really are.

  26. 😦

    Sometimes it just really comes at you hard. Most of the time I’m good, but sometimes things like this happen and it knocks me down hard. I know just exactly how it feels.

    Also, and I know you know this, but it doesn’t hurt to say it: There is NOTHING wrong with your girl. Big love to you and to her today.

  27. Ugh. That hurts. I think we’ve all felt that pain. The hardest part, as someone else mentioned, is that we see our kids as such gifts, we see past the autism and just see the person, and we forget how others see. It’s realizing how others see them that hurts so bad sometimes. Especially since they’re not seeing the whole picture, the true essence of who our kids are.

  28. I know that lump in your throat that says ‘will my child every be acceptable to the world’. It is overwhelming and scary at its least. But, as the parent of a deliciously handsome 3.5 year old boy with ASD, I constantly see the way he is changing the world, one person at a time. I know this is Brooke too as you write often about het impact on others. They change us, their siblings, therapists, teachers and extended family, little by little, day by day. The beauty of how we are all changing into something more in the likeness of God (although how I still fall infinitely short) is nothing short of a miracle. It is like a little piece of heaven right here….their raw nature that doesn’t see the ‘ugly’ in humanity like we do….teaching us to see and appreciate the little things in the world. Who notices the complexity of a flower like your beautiful daughter? They are way ahead….and already pursuing success as defined by God – be disciples and make disciples. The other stuff that the world says ‘matters’ is only an invisible tower that we create in our own minds that we believe means ‘success’. Fruitless…. I worry. Yes. But I am gently reminded, He’s got it.

  29. As I blow my nose and wipe my tears. I feel pitty for those who do not have the compassion of us parents/families that live this life of the unknown. Our children are their teachers of life and how to live without society’s idea of how to “be”. Our children are a testimony of God’s stregnth and his gifts to each of us. I pray that my son will teach a new person(s) daily that each of us are unique. My son is the mirror image. At 5 in kindergarten, non-verbal and a runner to the point that he must have hands on grip or is gone!! With zero safety awareness and will throw himself to get at things. Thank you for the stregnth in knowing there are other angels of these children on earth watching out for God’s children.

  30. Our worst was when the question got yelled in my sweetheart’s face. “What’s wrong with you?” I was so thankful for autism in that moment; is that crazy? I was grateful, so grateful, that my girl lived through that moment without realizing someone was being cruel to her.

    That we’ve all had these moments breaks my heart. But that we’ve all had these moments is also something I cling to — that knowledge that I am not the only one walking this path, not the only mama who has these fears, and not the only one bound and determined to keep picking up the pieces and holding on.

    Keep writing down the words, Jess. They help more than you know.

  31. I’m not usually preachy but….God did not put us on this earth and give us these blessings for nothing. There is purpose in all of it, many people could never handle the load we carry, and many of them just don’t get it yet. It was an innocent question and one that I may have asked at that age as well. Don’t let it dwell in your heart, listen to Mom-NOS above, there is just so much that is right. Move on with a happy heart today 🙂 LOVE YOU!

  32. I am so sorry you had that experience. I’m also truly sorry for Jamie and Jennifer that in this day and age they could not see what was right in front of their faces- how beautiful your little girl is inside and out. I completely get how much that sucked, but know that everything you’re doing through this blog is diminishing how often these incidents occur in the world. Good thoughts going out to you today!

  33. This summer at a birthday party for another 3 year old my 3 year old (C) with Autism couldn’t manage all the input. I was doing my best to help him but we couldn’t cut it…a full on melt down was coming and then I saw a father mouth the words “what’s wrong with that kid” to his wife. My heart dropped…we left. Both of us were in tears in the car. There are those awful moments…then there the good ones.
    We were on the neighborhood trampoline a couple days ago and some of the school age kids were asking where C goes to school. I told them about his school and explained that he has Autism. One of the kids came up to me later and said “I had no idea C had Autism. I just found out one of my other firends has diabetes.” Then he ran off to play with C again. That simple. My kid is who he is. Some people get him, us and our family. And those that don’t are missing out…because C is worth knowing and enjoying just like Brooke.
    So sorry this happened; it blows chunks…I hope today is a better day.

  34. There is nothing to say to take away the pain, fear, and agony you face other than the knowlege you have of several people that you have met who, while touched by autism, have made good, happy, and productive lives for themselves.
    For now though it just hurts so very deeply, but that hurt is what powers you to keep working with your beautiful baby to make a good life happen. I predict that she will continue to grow in leaps and bounds and she will find her path.
    Nothing is wrong with her she just has a different song. So keep helping her to sing it loud and clear.
    Love you,
    Dad

  35. We heard the same question last week from a 4-year old at McDonalds. It happened just as I was thinking how well my daughter was interacting with the other kids in the play area. Before I knew it I had fast forwarded through my life and panicked about all the scenarios you mention. I think of these moments as my tsunamis and try to remember that while I may be overwhelmed and drowning in that moment, things will be more stable tomorrow. At least until the next one comes. The problem for me is not knowing what the trigger is going to be. Wishing you (and all of us) a calmer day today.

  36. My heart goes out to you. ::hugs:: for you and your beautiful girl. There is nothing wrong with her. I heard a song yesterday and I think the lyrics apply here. The artist said that everyone needs to know that God has a purpose for him and that they are so loved and perfect that they are worth dying for. All the angels I work with everyday, and all the ones I don’t, are perfect and God has a purpose for them. She will find her village. God already planned it for her and he will show you and her what a wonderful plan he has when the time comes.

  37. I’ve felt all the things you’re feeling with my girls. The overriding fear of the unknown, the future, their anxieties becoming my anxieties. When I feel overwhelmed I try to remember my mother’s words- Remember where they were and how far they’ve come. Brooke has made amazing progress. She has such a strong support system. She’ll continue to progress-one day at a time.

  38. Pingback: Dude throws his hands up in the air sometimes… again « According to Dude

  39. I know the feeling, Jess…it’s quite familiar ’round these parts. Sometimes all we can do is hang on to our girls, our families, our villages. Because, if we’re really being honest, they’re the ones who are gonna get us through it. xoxo

  40. Was Katie there/did she overhear this comment? As a sib, I have a very vivid memory of a similar situation with my brother. Started off with tween girls “checking him out” and ended with them saying “What’s wrong with him?” I was torn between wanting to smack them silly and fighting my own embarrassment at the situation. Sometimes it’s hard to forgive young people for making such insensitive comments.

  41. When is society going to get it? What’s it going to take for them to understand Autism Spectrum Disorders? But then again, some people don’t care unless they have a child like ours. My 11 yr. old son walked over to a “friends” house and knocked on their door as I watched. No one answered even though I knew someone was home. My son walked over to me, put his arm around me, buried his head in my chest and said, ” R’s mom says I’m weird and I make weird noises and that R can’t play with me anymore.” I wanted so bad to march over to that mother and educate her. I was too emotional and would have cried the whole time because I was hurt and frustrated. I understand your pain, Jess. Brooke is beautiful inside and out as well as Katie. Thank you so much for sharing your feelings and everyone else here. I know I’m not alone.

  42. Ugh! I know that pain.

    No matter how much progress we have made (and it is HUGE), a comment like that knocks me back to square one.

    Love your blog. Thank you for sharing.

  43. oh goodness, i am crying. you have stated everyone’s fears so perfectly. i always have the same experience of not being able to repeat it. your daughter is so precious-love the photo.
    on another note, i desperately need suggestions on nap strategies for my 4 year old at preschool. she doesn’t nap any more and can’t seem to lay there still and quietly for an hour which is so hard. anyone have any advice?

  44. Those teens don’t know any better. I’m so sorry you had to hear their hurtful remarks. Maybe someday, teens who are unaware will learn compassion and will hold their comments. God bless your family.

  45. I know how heartbreaking this is for you, how the anger and confusion consumes you, I know because I am right there with you. This is simply more proof that there is not enough awareness being brought to the attention of our youth, which is sad. I say it is sad because, let’s face it, they are our future and the “normal” ones are hateful, cynical, and obsessed with being the best at everything. What are we teaching our children? Somehow this generation has gotten lost and they are drowning in everything that’s popular. So, here we go, once again, down that road, fighting. This is what you’ve taught me, this is what I have learned from you; TELL ONE PERSON, ONE AT A TIME. TELL THEM YOUR STORY, YOUR CHILD’S STORY, INTRODUCE THEM TO THE BEAUTY THAT IS OUR CHILDREN AND LET THEM SEE IT FROM OUR POINT OF VIEW. That’s it, it’s all we can do, blog about it, talk about, scream it to the damn sky if we need to. It’s about us and our voices. So I ask you how loud can we scream?
    This is our army, we are the only soldiers fighting this war and if we give up our children will be lost in the ashes.
    I know it hurts, I understand more than I’d like to, believe me. We will fix this, we will be heard, they will listen. ❤

  46. My son with ASD is 9; his NT brother is 7. What’s takes the broken pieces of my heart and shreds them to a pulp is seeing these emotions and hearing about these same fears from my 7-yr old when he hears these words on the playground… But what re-glues and re-molds that mush is seeing my 7 yr old be the one drawn to those of different spirit and witness him bring them under his wing and guide them/accept them/love them when others shun them. These are the angels that will be there when we’re gone… and I’m getting to feel ok about that.

  47. What’s wrong is that these two nice teens didn’t have a clue. There’s nothing wrong with your baby girl. But, let’s face it…there are a lot of things that are “wrong” with the responses that ignorance brings out. And it definitely hurts…

  48. There is nothing wrong with your beautiful girl. If someone fails to see the light that shines from her, that’s on them, and it’s their loss. She’s going to do great things in this world. Through your words, she already is. I know you don’t know me, but I am a young woman living on the spectrum on a college campus, and your daughter has touched my heart. I see so much of myself and my little brother in her. I know how it hurts, but no number of ignorant questions and offhand comments can ever take away from the fact that your daughter has people who love her, who sincerely try to understand her, who know that she’s perfect and wonderful the way she is. Thank you so much for sharing this with the world and for everything that you do.

  49. “What’s wrong with her?”
    That’s the one I just received from a child the same age as my own.
    Our efforts to engage in social situations (as much as we can) involve accompanying our little almost-five year old, as she is quite the escape artist. Sunday school is one such activity, which I’ve been doing for about three years now. Usually, I’m ignored by the other children. However, now many of them (all TD) are starting to interact and communicate with each other much better- which includes attempts to interact with mine. She is verbal, however not as articulate as others her age, and tries to engage with them. Sometimes with her eager attempts to hug and talk to them is intimidating.
    I usually cope by a using a chant from “Dori” in the movie “Finding Nemo”:
    “Just keep swimming! Just keep swimming! Swimswimswim.. just keep swimming…”

  50. There’s just holding on.

    *sigh* Sometimes that’s all we can do. I hope you were able to find some catharsis in writing this post. My thoughts are with you, from one parent to another.

  51. Awww Jess, there are so many words that I could say… but everyone else has already said them in one way or another. So I’ll just say this: I wrap my arms around you and give you one big hug, the kind that squeezes a few more tears out of both of us. Because I know. And it sucks. And sometimes a hug from someone else who knows is just what you need right before you pick up, put it behind you (once more) and move on.

  52. Someone very close to me (who knows better but has her own issues with impulse control and anger management) asked my son that question recently. Nothing like hearing someone you love ask your child “What is wrong with you?!” I bit her head off and for once, she apologized–first to my son, then to me. But I still carry the weight of that one moment in time. It can get very heavy. Which is why I’m glad to find community and understanding here. This life really does take a village…thank you for creating one for us.

  53. That does suck. I have had that happen more than once. Peer mentors are on my list to tackle now that my boy has started high school. They need awareness too. I’m sorry for your hurt.

  54. Jess – You are not alone. You have created an amazing community of support and love.
    “there is nothing wrong with my daughter, she has autism. if you, however, would like to become more informed and less judgemental (ignorant), let me introduce you to my 4,000 or so friends, neighbors & family, my community – read my blog and then let me know if you have any other questions. I’d be happy to answer them for you so you don’t treat another person like you did my daughter today”
    Much love & tenderness to you, from me.

  55. YOU ROCK!!!!!!! AND YOUR DAUGHTER IS SO LUCKY TO HAVE YOU. I know what it’s like to worry so much for your child’s future. To worry about what people are thinking. To want to shake anyone who doesn’t get it and somehow transfer the knowledge/understanding/compassion I think they need directly into them without having to explain.

    It’s not an easy road, and perhaps we wouldn’t choose it given the choice (although sometimes I wonder if, in some cosmic way, we did “choose” it before we landed here), but here we are holding on, making the most of it, and using every resource we have to help our children have the lives that were meant for them.

    As a fellow traveler, I say “thank you” for your strength, your example, your rad spirit, and your beautiful blog. And I reiterate- YOUR DAUGHTER IS SO LUCKY TO HAVE YOU. Because you rock. Because you love her for who she is, even when that means a lot of unanswered questions.

    Rock on!

  56. Ever wonder whats wrong with THEM. What happened to us as humans, that we don’t know what to say, how to act or what to think when we encounter someone we perceive as “different”. A shrug is unacceptable. Yet, it happens all the time. This is why we were chosen to be the strong mommies and stick up for our perfect kids. They are beautiful, innocent, kind, and all sorts of kick-ass! “what’s wrong with her?” – THESE WORDS HURT! But whats wrong with THEM that they don’t recognize autism is really the problem. We need more voices and more education and more compassion, so we don’t need to hear those hurtful words again. So sorry about this awful experience.

  57. Jess, I tried to find what I thought was one of your posts that trumps snarky teens and mindless Donald Ducks…. maybe to show them how they should be; where is that salad lady post? Do you know the one? xo

  58. I overhear quite often “don’t stare”. But then we are also on the receiving end of the “knowing smile”. The one that sends us love from a stranger who gets it. I love those.

  59. Last night in the store I realized again how different my family is. I almost become complacent with it, until we are in public. It is hurtful and I am sorry. No one knows until the run a mile in your shoes. Walking is the easy part, running is much tougher. I admire you and your family. Please keep posting. I enjoy it! Posting is also therapeutic for me, too.

  60. I see your beautiful girl and I see nothing wrong. I see a heart and soul so pure that no one can touch it with hurtful words. Your daughter is perfect. Both of your daughters are perfect. My sons are perfect, as is my daughter, also.

    Don’t let the world hurt you because they don’t understand. Know in your heart that there is nothing wrong, smile to those girls because you know your daughter and they don’t, and know that there are those of us out here who will embrace your sweet baby into our world in a heartbeat because we do understand.

    Much love to you, little mama. I’m here. I’m reading. And I get it. I totally get it.

  61. These are the words I’m so scared to hear. My son is three and some of his “odd” behaviors are easily written off by strangers as being a toddler. But there will come a day, soon enough, that I will face these words. This brought tears to my eyes. I know it doesn’t make it better, but I remind myself every time I see my son that he blesses me dearly. I have been enlightened by my son about how far-sighted judgment can be by a set of “norms.” The reality is, nobody really knows what is normal? Who makes the rules? The majority of course, but we miss out on so much when we allow ourselves to be boxed in by these silly parameters that leave us unable to see the beauty in being DIFFERENT. My son has freed us from that yoke. My family, my neices, my friends are all free from that yoke. It’s a blessing I can only pity that others have not yet found…..

  62. I remember once in a grocery store, my son Christopher (who is now 11 and was 9 at the time) kept touching all the little goodies by the register and the cashier said “please have your child behave himself”..Chris didn’t understand the harshness in her voice or exactly what he was doing wrong then he began to play with the belt that moves when you put your groceries on it and she huffed “what is his problem”? The woman behind me said “what is YOUR problem” and she reported the woman’s behaviour to the manager and she eventually ended up losing her job for her bad attitude towards customers…simply put, not a people person or a person with half a heart as far as I am concerned…I said “he is autistic, what is YOUR excuse”? She didn’t know what to say and said “oh that”…wow…I realize that there are very good people in this world, the majority are good but for a few rotten apples we must remember to remind them of their mistakes..just hope they remember how their words hurt someone else…I worry to death about my son Christopher, almost as if I can NOT die because who would care for him? Thankfully, he has 3 brothers and a step father who love him dearly so I needn’t worry as much as I do…he will always be my baby.

  63. I tell those people that my son’s mind is just too beautiful for us mere mortals to understand. That shuts them up quick. 🙂

  64. I’ve been there! (I’m still there) but also a mom at school the other day said ‘all the kids just LOVE your daughter!’ like she couldn’t believe how much they love her. Some people don’t know what to do with her, but some people love her extra 🙂

  65. Thank you for writing this and sharing. We can only hope that parents who have kids who do not have special needs, can work to raise them NOT to be like Jennifer and Jaimie and to think before they say the things they do.

  66. This made me cry. I know why so many children are robbed of “normalcy” – even though they are still perfect angels – but it makes me so angry. And for people to make such rude remarks! They may be teenagers, but do they live in under a rock? Are they too busy watching (and being purposely distracted by) MTV to realize that every other kid is being *mysteriously* diagnosed with autism? And we all know why this is happening, and those responsible will NEVER be held accountable. If you’re not angry, you’re oblivious. What a world we live in! One good thing is that perhaps your baby will never know how f*cked up of a place this is. That’s a big positive. Because I dread explaining to my daughter someday. I already had to tell her that she can’t let anyone give her injections at school even if they offer her gifts.. and she’s not even 5 yet.

  67. i have actually gone off on people in the store who have looked at me and said ”dont u know how to control ur child” or ”what is wrong with him” i cant handle it sometimes (not my son, the comments) because ignorance annoys me. my hub at the time had my son in the front of walmart because i was checking out, and he wouldnt keep his hands off the self checkout counter (both my kids, one is autistic, the other is not, love to touch it even when i tell them not too) Well. he was throwing a fit (as usual, he was about 3 at this time) and this man, NOT knowing that was my child (he just walked up behind me) he says to his wife ”the parents of that child need to learn how to control their child, thats an embarrassment” i turned around and said calmly ”maybe he is autistic or has something wrong with him” (mind u im in south carolina at this point, so insert redneck southern accent for this next comment) he says ”well, if the child is mentally retarded, then he should be locked up in a home, not out in public with ‘erryone’ else” of course mamma bear mode kicks in, i started screaming at this man, i almost knocked him out cold. the cashier and security had to be called to escort me outta the building. my son is now 9, he has learned to control himself a little better, sometimes its still rough, specially when its an after school walmart trip, and hes been sitting still all day. But, i hate ignorance, i have learned to compose myself a little better since that day. But, it is still very hard.

    • way to go! I myself might have clocked the guy!!! (I do have a habit of saying “I’m going to knock you out”)….this is embarrassing but; one day in mcD’s, after a particularly trying day (& my own issues flaring) I said that to my son ~ please note: I have NEVER hit him….this is a verbal “oops”….*sigh more & more I think I’m on the spectrum too!~ this guy walked past, backed up & in the most horrid voice told me that I disgusted him. I wanted so badly to a)clock him or b) scream at him that HE needs to have him for a day & see how pleasant he is at the end! Thank God for my son’s forgiving nature; he knows beyond a shadow of a doubt that I love him & never ever meant it.

  68. I am so glad that you posted your frustrations and feelings on this situation. I also have a daughter with Autism and I ask myself the same things everyday. I have learned that there will always be someone who says the wrong thing or who will judge our children for something that is out of their control, and all we can do is to deal with autism one day at a time.

  69. my nephew has autism, everytime someone tells me sometime is wrong with him, i tell nothing is wrong with him god made him a special boy i love him with all my heart til my last breath he makes me laugh so much..

  70. These poor girls never meant to be cruel. They noticed your little beauty’s difference and wondered. Most people just don’t understand. Education about this is so needed. My grandson is in the ‘spectrum’ and is different enough to make his parents worry and others wonder. And the medical profession still keeps pushing vaccines!!! We can trace his changes directly to his MMR vaccine. Sooo sad and frustrating.

  71. She is very beautiful! I have a 5 year old with ASD, and he is getting too big for the shopping cart *GASP*. He is starting to do better in the stores, but I know exactly what you are feeling. Derek is the cutest little guy with just ever so slight freckles across his nose. It breaks my heart when people try to speak to him, then are taken aback when he doesn’t respond. I always play “middle man” to prompt him to return conversation. He IS interested in people, but only with what he wants to know- not what they want to know! LOL Keep your chin up and hang in there mama!! We all do understand, and when I meet someone out whom I recognize as having an ASD kid, I give them a smile and comment on how beautiful their child is, no matter how their behavior is at that moment!!

  72. My son hasn’t been diagnosed with anything specific, though he was born 12 weeks early and at 2 is pretty far behind other 2 yr olds, he is legally blind and doesn’t have any means of communication yet, he barley pays attention to unfamiliar voices and at any store we go to we get so many dirty looks at the checkouts, he gets frustrated when you don’t understand him and will hit his head on things or “flail” around in a fit and the dirty looks continue, when I look at my son I see nothing wrong with him, he’s just a toddler trying to figure out the world without sight. No one understands how their comments and dirty looks can hurt someone, we live in a b.s. world where if a child doesn’t develop or act like how a book says they should “there’s something wrong with them” just because a child has disabilities, be they physical or mentally, or a child learns in a differnt way or has his own way of self expression doesn’t mean there’s something wrong with them even though their words linger and sting you love your daughter for who she is. Im sorry there are still so many ignorant people in this world who can judge and criticize an innocent child. Your daughter is perfect just the way she is. I wish you and her the best in life and i hope one day we can live in a judgment free world ❤

  73. I feel your heartache and relate completely to the thoughts and worries that run through your head and heart. Our babies are just exceptional. There is nothing “wrong” with them. As a mother of a 3 year old boy with autism this is something I have to remind myself of daily. They are so beautiful and perfect, my son brings such wonder and joy to my life. When that little boy looks in my eyes everything is just as it should be. Believe it!

    Btw….my response to those two girls would be…..”I can hear you!”

  74. I’ve heard this before myself. My son, Jefferson turns 4 in November. He has ASD. He uses some words, but is functionally non-verbal. Many times when we’re eating out or at the store, people talk to him. He often hides his face, and is mistaken for shy. Other times he starts to stim, holding his hand in front of his face and humming. One day he surprised me by telling an older woman, “bye-bye” after hiding his face while she told him how adorable he is. That was a day to celebrate. This is how I get by, I celebrate little things, like a wave or the day he told his speech pathologist “no, we go now” when he really did not want to work.

  75. not a damned thing’s wrong with her. she’s just wired differently. I hate when people hear that i have aspurgers and immediatley assume i’m retarted…then they treat me differently. its so frustraiting. my heart goes out to you!

  76. First of all. . .people are ignorant. Even if they thought that. . .standing at the register or in ear shot of any customer. . .that was totally worthy of being fired for. That said, I know that it only complicates your life to clean out the rif-raf single-handedly. Don’t bother.

    I don’t know, from your story, how severe your daughter is. . .but take heart, I have seen so many children progress well enough to be interactive and even moderately social. It is entirely possible that your daughter will have many of the same experiences as other kids. . .maybe later than most. . .and maybe only a few. . .but none of us is a carbon copy of the other. Every life experience is individual. Do the best you can to get your child to adulthood. . .however long that takes. Focus on tasks that are necessary, don’t worry about whether your child has friends or marries. Not all NTs do that either. Don’t build expectations about what your child should accomplish or you will disappoint yourself. Parents of NTs do that all of the time and then have strained relationships with their children, who have something else in mind. Just focus on tasks, encourage some independence in controlled environments, and social interaction in limited amounts. Every child is different, regardless of their abilities, and they adapt to make the most of what they have. She is young right now I assume, so you don’t see what she can accomplish. It is slow (very slow) but she will reach a lot of the same benchmarks eventually if you be her advocate while she is young. I am a huge fan of mainstreaming if the child is capable of doing the academic level of their classmates then they should be with them. If the school has to pony up an assistant assigned to your child then so be it. If she doesn’t see other children interact daily then how can she learn those cues? It will be slow, like I said, lose the expectations. . .but one day she will get it, and you may even be the last to know.

    My sister-in-law to be asks all of the same questions that you did and expresses all of the same worries. I have known her for 4 years and have seen huge improvements in her son, but she will always see him as a helpless child who needs her to exist. The fact is that he does better away from her, when he is with me or my fiance or at school, precisely because she has expectations that he will not reach those bench marks. He refused to say people’s names his whole life, and still only refers to people by “he, she, him, her” but last summer he walked up to me and asked if it would make me happy if he said my name and I said of course it would. He took a minute standing staring at me and then he belted out my name. I squealed and cried I was so excited. He still has never said Dad to this day. And Mom is sparingly used, and mostly used in the context of “new mommy” which means grandma. I know it isn’t much, but it was huge, and means that he can do it, but it has to mean something to him in a different way than it would to you or me. And your daughter will get there too.

    I have a 17 year old son (he’ll be 18 in December) and he’s a senior in high school. We were told that he needed to be diagnosed for Asperger’s Syndrome when he was in 5th grade, and he was on medication for impulse control. We worried about him and at that age there was little that they could do to help him. I already was doing all of the parenting things that I could and read up on Asperger’s. We opted to not have him diagnosed in order that he could continue in school without the stigma of special accommodations. He had no friends and was extremely awkward. I over heard many of the same tasteless remarks that you hear. “What’s wrong with him?” Or because he wouldn’t speak directly to a person who wasn’t close family. or make eye contact, “What a rude child!” He wasn’t a hugger so I got grown adults with hurt feelings at his rejection. Kids that picked on him because he talked funny, and then when he limited his speech to avoid that problem, he got picked on because he didn’t talk. A beautiful thing happened to him at the end of his Sophomore year though. A kid picked on him in class and upset him horribly. My son is a tall broad shouldered handsome youngman, and most people understand at least that he is shy. This kid made him cry. Well, the kid got suspended. . .but the most beautiful thing happened as a result. The other kids, without drawing attention to the incident or dragging out the drama, gathered around him and befriended him. They protected him and accepted him. The most amazing thing ever! It restored my faith in humanity, and gave me hope that my son will be just fine when I am gone. A counselor told me once that he would be the little old farmer that comes in to town for banking and groceries and is reclusive. . .I wanted to punch her right in the face. . .don’t write the end of your kid’s story, and don’t let other people. . .God’s not done with her yet. People are obnoxious. . .seriously. And if it ever gets to the point when she hears it, you use those idiots as an example of what NOT to do, even if she one day walks up to them and tells them that! Our kids will be happy on their own terms. . .terms that you and I don’t understand. . .but they will achieve a contentment with themselves and their lives. Be available to help when she gets stuck and encourage independence. God bless your family!

  77. I ask myself these questions daily, and while the answers sometimes evade me, the love I have for my child grows stronger everyday… Sometimes I just tell myself that I’m gonna have to take things as they come and if I have to take care of my child the rest of my life, maybe that’s why I’m only 19 years older than him?? idk, but it just feels nice that I’m not the alone…

  78. I understand the point behind this and how sensitive the subject is, but I think even though the question may have sounded insensitive, I think the girls were merely curious. In my opinion, it doesn’t sound like the girls meant anything malicious by the question, and instead of people becoming defensive in such situations, it might be beneficial to use the opportunity to educate others so there is a more mutual comfort of acceptance.I think if the mother would have started a dialogue with the girls and had been more open, she would have been less worried about her daughter’s future and less hurt by the incident. Also in the process, educating others is like a chain reaction. Even though the girls may have had a poor choice of words, don’t let such incidences feed your fears and try to use these incidences to your advantage. I do wish you the best and I am sure your daughter will have a beautiful future especially with such a loving and supportive mother.

    • Glenda, I can only guess by the tone of your comment that you’re new to these here parts. Jess is the most incredible advocate for her beautiful daughter and for autism in general. SO much so that she was invited to THE White House (yep- that one in D.C.) to advocate on behalf of families who live with autism.
      However, haven’t you ever found yourself in a position of raw vulnerability where you were rendered speechless? I know I have. It feels like a literal punch in the gut. It takes your breath away. Lucky you if you have always been capable of getting through those moments and turning them into teaching experiences every single time. I personally think you must have super human powers of that is the case, and therefore I am jealous. I can and do advocate ferociously on behalf of my child and trust me- I have a mouth and I am NOT afraid to use it in situations like that. However, I sometimes find myself cut at the knees, paralyzed and unable to form even a syllable. Most parents have those moments at one time or another. To judge someone like Jess without knowing the full story is unfair. I suggest that you get to know her a little better through reading just a few more blog posts. Trust me, you will be in awe of what you read. (and just a side note- this is Jess’ blog. No need to speak of her in the third person. “that mother” is right here in this very room. Hopefully nobody would ever loudly speak about us in a room where we are also sitting with them- this is pretty much the same thing.) Jess is an incredible, compassionate person and I’m blessed and honored to call her a friend.

  79. I am reminded of the quote…”forgive them Father..they know not what they
    do…” That is the only thing that helps my heart.

  80. I so understand..I will admit that I was judgemental until I had a friend who had a child that behaved differently..it was thein I understood that maybe that child I see runnig around being loud or behaving strangely isn’t just bad..we are so quick to judge and as a parent it is very difficult because people frown.up on what they dont understand..and this is now my own reality ..the looks..the stares..the wispers..because my

  81. I am greatful that I understand and I have some of the same experiences that cloud my memories…and I no doubt will face again…

    Our son is bi-polar—and does not handle noise, stress, and crowds.

    The verbage from the people surrounding us in our day to day life, stings, but we have learned to walk away without judgement…because they do not know or understand…and they cannot conceive that “we would let our son ‘act’ in certain ways”, or ‘dictate” or lives…I use my armor of turning off that emotion. Which takes a lot of energy…my therapist tells me!

    Though, my armor disappeared, when my son, who is now 14, and facing middle school torment, asked “Why aren’t I like my brothers? Why am I different? What is wrong with me?”

    My eyes filled with tears, and I hugged him. I did not know what to say…

  82. it gets better:) Trevor got diagnosed when he was 5 with ASD. He just turned 13 on the 5th of this month. He went thru social counseling from the age of 5 til he turned 12. He had an amazing counselor who with me and my families 24 hour a day 7 day a week socially molding him, you can hardly tell he is different. He has come a long way. I love him so much….just like he is! Like your daughter, he is amazing!

  83. Comments like that have seared my soul, however I always take the time to remember that my son who is a unique, happy individual and realistically, he could care less about the comments insensitive people say. One of the blessings of autism I guess. As for the future, it is such a stressor. Most of our friends are worried about saving for college. We are saving for our son’s lifetime.

  84. my beautiful 3 year old was just diagnosed and I have had these very moments while at the store people whisper because my daughter is screaming and running around she doesn’t mean any harm and I wish people would get over the old saying children should be seen and no heard. I hate the stares, whispers and stupid questions.

  85. Why not tell them. You think something’s wrong with her or you wouldn’t be so hurt. As long as people cocoon the info (and hurt) these lovely girls and everyone like them will think of your daughter as someone different from them.If you just tell them, they’ll be ready next time — and probably be more welcom’g.

    If the behaviors you fear were more central behaviors — a lovely singing voice, an uncanny ability to dance — you’d be happy to discuss. Love your daughter for her behaviors, skills, uniqueness and you’ll be more content.

    And so will she.

    • Oh, my. Mary, I have to assume that you are new to this blog.

      First, let me say that I agree WHOLE-HEARTEDLY that we need to celebrate our children and love them for who they are, just as they are. We need to love them for their “behaviors, skills, and uniqueness.” Yes! Bravo! Amen! I espouse this philosophy myself. I write about it on my own blog all the time.

      But do you know who espouses it more vocally, in larger venues, on higher platforms, to bigger crowds, and in much more articulate ways?

      Jess from A Diary of a Mom.

      This blog is infused with love and respect. It is built on a foundation of celebration and optimism. Jess’s posts recount her family’s life – and through her writing, her readers come to understand not only her devotion to her daughters, but also her commitment to celebrating their unique spirits. By seeing Jess’s children through Jess’s eyes, parents learn to look at their own children differently.

      Jess changes lives. Every day.

      And one of the reasons that Jess’s blog is so popular – one of the reasons her words resonate so thoroughly with other parents – is that Jess is honest. Life with autism is not all sunshine and roses. Though Jess’s focus is always on the gifts, she also acknowledges the struggle. And through that balance, through her role modeling of the artful negotiation of that balance, she helps us all stay whole.

      This post was the story of a sucker-punch. It was the story of a day when the walls caved in when she wasn’t looking. Jess is a tireless advocate. Over the last several years, I’d guess that she has spent more time “just telling” – as you suggest – than she has spent sleeping. But sometimes, she gets to hurt. And she gets to share it. And when she does, it’s our turn to prop her up.

      So, I agree, it’s important to focus on the positive. But with this comment, you’re giving that advice to the person I know who lives it best.

      And that being said, I hope that if you ARE new to A Diary of a Mom, you’ll stick around and you’ll mine the archives. I’m certain that you’ll love what you find.

    • wow you so need a clue! I agree with the person who replied to you. @ Jess…thank you for being so real. I do believe I will follow your blog, as I’ve isolated myself for far too long. I need to see someone else who feels as I do! God bless you, my dear!

  86. My son wasn’t diagnosed until he was 10. I have had these same questions asked, people stare or whisper. For a long time it was very difficult and sometimes it still is. For a long time, like you I would just turn and walk away quietly. Not anymore. I will now tell them, “Actually, he is autistic, he has something called Asperger’s Syndrome.” And then walk away. My son now has a lot of pride in his uniqueness, he’ll be the first to tell people. It’s helped a lot. He doesn’t have nearly the problems he used to at school and has gone from being shy to quite outgoing and talkative. And those people, well, I figure they are left feeling kind of stupid or a little more educated.

  87. This has happened to me many times. There was once another person came to me and said seriously you need to shut your kid up bc his screams are interuppting my shopping time. My son is was diagnosed with autism as well, and he screams a lot, and he flaps his arms a lot. Mnay people look at me as if I am a bad mom . . . . hell i have had people tell me learn to control my kids, and flat out sya im a bad mom . ALl i do is shrug it off. back to the one who told me to shut my kid up . i told this person that my son has autism, and he can not help how he acts, and i can not do much eeither. if you dont like then you can go to another part of the store. i and my son have every right to be here ! tht is all i said and walked away. I did however cry once i got into my car bc i simply feel terrible for my son becasue he is kind hearted and means no one no harm but yet he will always be judged becasue of the silent disorder he has. you cant see it from the outside so people jsut assume bad kid !!

  88. I am a mother of twin daughters with cerebral palsy. They are 17-years-old…one is severe….one is moderate…both being confined to wheelchairs. My husband and I were just talking today about all of the would of, could of, should of’s. We are at place in our lives where we now have three grown daughters and we should be looking forward to having some independance back, some alone time, time to just care for ourselves. Don’t get me wrong I love my family, my girls are what keep me going everyday. The inspire me to be a better mom, wife, friend, and all over good person. However, there are times when I am mad, down right angry at what should have been. I know we can not get stuck there, and that many of us feel this from time to time. But I can not help but feel robbed sometimes. Then I stop to think if this is how I feel than I can not imagine what goes through their heads at times. I think how my oldest daughter must feel, what she was robbed of because we had to put so muh into taking care of the girls. The twins are at that age where they should be driving, going on dates, moving on to college (which my one daughter will), and just having the time of their lives. I see it in them and know I have to put on the face and be accepting of this life, so they can accept it, and I do. Others look at us and say well your life would be easier if you would have just done things this way or that way, but unless you are living it, you just don’t get it. It is easy for others to look from the outside in and say how things should be done, or how you should feel, but again unless you live it everyday…you don’t get it. I am glad that I have found this page so I can say this and know there are people out there who do get it!! Thank You!!!

  89. Only one thing comes to mind when I read this “Let go, let God.” God has a plan for everyone, even autistic children. The lack of education or “ignorance” on Jamie and Jennifers part isn’t really their fault. I know autism awareness is getting better everyday but right now to truly understand how wonderful they are just spend time with them. Autistic children truly are a gift from God!!! (Actually everyone with Autism)
    God bless my little Kyler Ray and thank you for a wonderful gift!!!

  90. “The will of God will never take you where the Grace of God will not protect
    you”.

    I cried when I read your blog. I know where you are, been there. My son is going on 13. Heard it all….it hurts…it hurts bad. We fear the unknown. What will happend to our kids? I’ve come to the conclusion that I need to live for today, love him today, hug and hug and hug him today, help him today, laugh with him today and teach him today. I have no control over tomorrow 🙂

  91. As the mother of an aspie son I read this and flash on all of the people that have said… omg that woman cant control her kid… the old man who muttered god damn doesn’t that kid ever shut up… the young couple who when my child has an accident mid way through shopping loudly say “WHAT IS THAT SMELL” looking right at him…. I feel your pain…I feel the heart ache…I understand…you are not alone ❤

  92. I’m pretty sure that the purpose of autism is to reveal the jerks that surround us. Of course I am be facetious. But it does seem odd how those of us on the spectrum attract negative responses.

  93. Feel sorry for those girls, who may not have been taught compassion and understanding & hope that they will not have to endure something so cruel said about their children. We should all be teaching our children that all life is beautiful & just because someone is different doesn’t make them ‘less’.

  94. My daughter is 17 and has HFA as well as Mild MR and Epilepsy. I always tell parents I am blessed to meet with “live for winning the battle, not the war.” “Enjoy each little victory. Celebrate them in over the top ways.” While this is all true and I have, I now have new fears that are overwhelming me.

    She turned 17 this past summer. She’ll be 18 next summer. We’ve already lost any services she once qualified for due to budget cuts. We are on our own. What happens when she is 18? When she graduates high school? When I am no longer here?

    While I appear to everyone else that I am handling this all in stride, it is near all consuming me internally. We live paycheck to paycheck, there is no money set aside. We just don’t have it. I haven’t “found” anyone to entrust her care with at this point.

    She will graduate with a “certificate of completion”, not a diploma. There will be no college for my daughter. What becomes of her, how will she survive? Will people be kind to her?

    The fear is there. I pray, I try to leave it in God’s Hands, but inside…it’s always there. Almost like the ticking of a timer.

    My daughter is such a miracle. I have learned so much from her. My prayer is that others will see the beauty that is within her. That they will see ALL she has to offer. I do. Everyday.

  95. As a mother of 4 so called “typical” children, I may not be able to fully understand your feelings. But i would like you to know that there are those of us out there that have made it a practice from the beginning of parenthood to teach our children that there is nothing wrong with any of us. We are all different, in big ways and small ways, but God knew each of us and knit us together in our Mother’s wombs. We are all God’s children, with amazing traits and unfortunate flaws due to our humanness. I pray that they will show grace to all people and will teach kindness through their example. Thank you for sharing your journey.

  96. As a mother of a child with ASD I understand and my heart goes out to you. A similar situation happened to my husband while he was grocery shopping with my son. My son decided to throw a fit right in the middle of the store. As my son was having his fit, a woman came up to my husband and said “that is terrible behavior.” My husband looked at the lady and said “do you have a child with ASD?” The woman said “no”, left her basket and ran out of the store. My husband turned around to find an audience applauding him.

  97. I know an a woman who has autism. She drives, has a job and is married. Of course every case is different, but it is possable. People will hate, but every one has haters, if you exceed standerds, your a nerd; if you have your own personality, your weired; if you are pretty, your stuck up; if you dont look like a barbie, your ugly…. So on and so forth. People will find something wrong with everyone. But God is the only one who can judge. He made your child exactly whou he wanted her to be. Every one has chalanges, and God never puts more on you then you can hanndle. If she has more chalenges then most, He must know she is STRONGER then most!

  98. There is no right reply. People out there are not educated enough about disorders,illnesses and all other things that effect others. Until it happens to them or someone they know then they will read up on it or know a lil bit about it. I have a daughter with ASD and she has had tantrums. People just stare and don’t understand, makes me sometimes feel singled out. I have all the same worries and fears for my daughter. I would go with the saying Don’t judge a book by the cover or just don’t judge until you know the reason. It is very sad that people do judge. There was absolutely nothing “wrong with her”. She was just being herself and that is all she be.

  99. I stopped reading replies @ around 22…tears streaming down my face from the first words of your post…my heart in pieces for you & for each one of us with the tender mommy hearts that have to hear those HURTFUL destructive words! My sweet HFA son is nearly 9 now & was “finally” diagnosed @ 4 1/2…my early childhood training told me “something” wasn’t quite on the level & I can’t tell you how many times I’ve beaten myself up over being told otherwise (btw by my unknown-to-me-at-the-time adult Autistic husband!). Did I grieve? YES. For him, for us, for my dreams & hopes of it being merely my depression & not HIM! I agree with one responder that God chose ME to be his mother & God does not make mistakes. (I somehow always knew in my heart I’d have a special needs child). After my initial tears dried…or rather slowed to a trickle….I bent down metaphorically & picked up the gauntlet that was thrown at my feet….picked up my child in my arms & promised him that I’d love him, guide him & be a staunch advocate for our family from that day on!
    And to those who have dared voice the question aloud “whats’ wrong with him?….or even what’s wrong with YOU….I have simply said these words”
    NOTHING! What’s wrong with You???????????????????????????? 😉

    When he’s down & lonely….we cry together. When he’s happy & “up”….we laugh & play together. When he’s hurting…..we hold on tight & love on each other. When we’re both irritable…..well, then there’s a benefit to having two livingrooms 🙂 😉 ……..we give each other space. Above all…..we love eachother AS WE ARE & if the rest of the world doesn’t like it, well, they can all go pound sand 😉

  100. I have two AS sons 21 and 18. people are more aware now than they used to be. Those girls were unaware they just needed a card to explain autism to them. The bad ones are the ones who call your child names or tell you your a bad parent. I tell them off,not very nice ,but it hurts. I think Autistic and down Syn kids have so very much to teach us. I say they are stars and hearts in a square circle world. Im so glad to have the priviledge to be the mom of extra wonderful children. I have gone back to college to work with special needs children. They make life more exciteing.Your daughter will bring you more joy and excitement than anything else this world has.

  101. Both of my children have Autism. My daughter is almost 4 and my son is 5 1/2. I have had people ask me this. When someone asked me rudely “what’s wrong with him”, I responded, “He has Autism..what is wrong with YOU???” My friend makes custom shirts explaining what Autism is and telling people to please be patient with our special kids. It’s saves my feelings from being hurt, saves me the energy of having to educate everyone, and spares my kids the painful comments and glares. http://www.thepacepack.com. Our children and beautiful and wonderful and there is nothing wrong with them. They are perfect, just like God made them and they can reach the stars.

  102. My mom got a similar question from time to time when I as a toddler would spout sentences around 80 words longer than necessary about topics with little relevance to the conversation at hand,while rearranging the items on the shelves to a more symmetrical configuration!. The questions went like, “Well,isn’t she smart? And so talkative!” but the face said….you guessed it! I am an Aspie adult,and while I can’t relate to more classic forms of ASD or being a parent,I can say with assurance-your children are blessings in their own way (duh), and with all of us advocating for them til they can advocate for themselves, they will be fine,in their own way.Not society’s way,maybe. But that’s OK.
    Heaven bless you parents out there doing all you can for your kids who are,to quote Temple Grandin-“different,not less”. Let’s keep on talking,writing,and voting til the Jennifers and Jaimes out there will say not “what’s wrong with her” but instead “oh,is she on the spectrum? How can I help with your shopping today?”
    Wish my Mom had heard that one!

  103. Ahveinga child now 21 on the spectrum it never seems to get easier BUT I think my responses come easier. What’s wrong w/ him? eh was snet here to challegene who you will respond to those you are different. What kinda boy is that? Active and a little be different, and one older man at a md office wnet off on me and my son because the wait stimulation was too great for my son saying that I was not a good mother and something should be done about him. and I told him something was “done about him’ he was snet to ME by God not you becasue He knew you couldn’t deal it w/;it. YOu need to be thankful you don;t have to deal w/ everyday of your life becasue you don;t have what it takes to do it.
    I will say not my son is open w/ his disabilites and is up front w/ those he meets and more less apologozies for his behavior before it happens explaining how life is like for him, what sets him off, the sensory issues etc and he tell peolple if you can’t deal w/it I don;t need you in my life. I have enough to wrry about I know I am special and I ahve a purpose and if I drive you crazy and you can’t see it keep walking I don’t need you to try to bring me down. I try my best 90% of the time nfd the otehr 10% yeah I can lose it and am unreasonable etc but it is always over the same things and you will always know where you stand w/ me and you will never have a truer friend,
    As a mom I worry of course will he find a woman to ove him and accept him for who he is, will he be able to hold down a job being so brutally honest….. I pray every nite and put in God;s hands. I agree He has a purpose for Chase

  104. We all hope the day comes when our children, no matter their disability, is looked at and accepted for who they are. My friends tell me all the time that they are so thankful for knowing my daughter, who is 13 and has ASD, because they are more aware and more accepting. They look at ASD kids as the special people they are and are much more tolerant. As long as we can keep spreading the awareness I believe the day will come when we don’t have to deal with the ignorance. I too have been in that situation and it hurts a lot. Thank you for sharing your story and know that you are not alone and that our kids are AWESOME.

  105. I LOVE the movie Temple Grandon her mom says “different not less” that is so perfect. we don’t need to cure Autism it is a gift. the treatments are Amazing though and help people live happier lives. people will always be jerks. I hate it too, but sometimes people understand and that is wonderful.

  106. I’ve been asked that too, and it still hurts. I’ll never forget the man in the barbershop who heard my three year old son sobbing through a haircut, and muttered, “Rotten spoiled kid.”

    There is nothing “wrong” with your beautiful daughter. Sending you hugs.

  107. I have a boy, Noah, 12. I was made to feel shame, one way of another, every time we went out, for years. Both before and after diagnosis at 7.

    I want you to know who he is now. We did one of those biomedical approaches — GFDF diet, chelation, supplements, and therapeutic stuff based on his interests: music and horseback riding. At 9 he became meaningfully verbal. At 10 he wrote stories about what it was like to journey from his shut-in world to what he is now: still PDD-NOS, still quirky as all get-out, but healthy, and proud of his struggle. He has only one friend. A typical boy, a year older than him, who loves to play video games with him and loves to laugh at all the surprising things Noah says. And loves him for understanding things only Noah can understand, and doesn’t care about the quirks. No, actually he likes the quirks.

    I know how much it hurt before Noah got a world of help, and even now that he’s SO much better, I still have neighbors that won’t look at me — which is why I know someone “told” them. But I also have neighbors that are extra nice to him. I think that outright hostility is always toxic, but you might someday, after lots of loving support by an understanding community (may you find that surrounding you someday, as we have) find the grace within, to say to someone who comments: “Oh, don’t freak out, honey. Yes; she IS different from typical children.” and follow that with your explanation of choice. Say “autism” or say “bright lights/noises kind of short-circuit her.” Say “It’s not her fault.” The shorter the better. A confident, loving voice. Because you are right, and they are mistaken.

    Then if they still want to say something is wrong with her… well, you and me and G-d know there’s something wrong with THEM.

  108. It’s so hard to hear such words! Everyday I am the advocate, I am the one who has the voice. I see the kids turn away or walk away from my daughter, who can’t read the clues, as she continues to talk after the child has left. I see the saddness in her eyes when kids make excuses why they don’t want to come over-she understands some of it. It breaks my heart! I silently wonder will it get better, will she find happiness? I know where you are. I know how everyday is a challenge to explain the circumstances.

  109. My ASD daugther is 24; we have had our share of “those” days at the store. One shopowner refused to allow us back in because of my daughters previous meltdown while there. It doesn’t get easier, the challenges are just different. The struggles are less physically demanding and more emotionally demanding. I was married to a man with ASD for 25 years (thus the ASD children);he also suffers from manic/bipolar (she was also recently diagnosed with it). We are no longer married as his lack of boundaries and out of control behaviors were putting us in legal situations. Is this the future for my daughter; the same as her father? I am afraid so as she too lacks boundaries & exhibits out of control behaviors, even as a young adult. She is an extremely talented artist, working on a master’s degree in Fine Arts. Her father is a “rocket scientist” with a PhD in engineering. She was such an “oddball” in school that I removed her from public school after 4th grade and homeschooled her and her siblings. She struggles with relationships; empathy and reciprocation are foreign to her (as they are to her father). To be honest with you I hope that she never “finds love” or marries; it would be a such a tragedy (for her spouse) if she did. Unfortunately she is not capable of giving for the sake of giving; she only gives to receive. She is very unique and interesting…she is my ASD daughter…..and I love her, despite her differences.

    • Starling – MY. What a lot to handle. I can hear the love for your daughter find its way through the hard times – so important. And wow – homeschooling – that takes a serious commitment and it is the most difficult and rewarding work a parent can do.

      One thing really struck me however – that you would choose a ‘loveless’ life for your daughter so as to avoid pain and hurt for her or her partner. That truly saddens me. Having a young daughter with ASD myself – a daughter who was also born with a chromosome syndrome – I imagine love is the ONLY constant, therapeutic entity in her life. Among many challenges, it is my fervent HOPE for her that her life is always filled with love.

      Should she grow up and marry, I do not imagine loving my daughter will always be easy. I am sure she will continue to have lifelong challenges in certain areas so God bless her partner. But as a ‘typical’ adult myself (and I think I have good friendships and relationships) I am far from easy to love sometimes. But I am worth it. Everyone is worth it. Everyone deserves love.

      So do you.

      I am sorry your marriage was a difficult one. I hope your heart can heal and you can open yourself to the possibility that love exists out there for all of us – you, me, and your daughter, too.

      Regardless of autism or any other disability – God chooses love for us.

      I wish you the very best.

      • Whew…where to begin! Dear sweet Starling, I’m sorry your experience was so brutal to your soul. Hindsight being what it is, I’d have to say I never ever wished (on myself OR my husband) our past hurts or love losses (or whatever angst we visited upon others!). However I would not trade all the positives or good memories for anything! My dear husband is ASD & I seriously think I have thusfar gone undiagnosed. Has life been difficult? YES. But…not one bit of it would I unwish!
        and I agree with Mrs SM..homeschooling….wow! I love my child dearly but I am not teacher material 😛 Good for you 🙂 Makes me a bit green with envy …but proud to know such strong women!

        Mrs. Sergeant Major…oh, bless your soul dear woman! Reading your third paragraph made me cry! My husband and I are coming up on our tenth anniversary this year…..what a wonderfully blessed decade it’s been! Easy?….no WAY! Full of love, challenges, more love & many laughable moments…oh yea 🙂 Thank you thank you thank you. I needed desperately to read that. To me it’s a small thing & only makes me wonder what’s wrong with ME for feeling challenged in our marriage….but I guess it’s not all about me, huh 😉 The blessing may not have been initiated for me, but it struck my heart & soul just the same. Thank you.
        wow. tears continue to fall.

  110. I just want to let you know how much this touched me. My son is turning 18 in January and I am beginning conservatorship proceedings. All of this has brought even more to the forefront the big questions of life and that feeling that I can’t die. What will happen to him? Will he be happy? Will he be taken care of?? SAFE?!? It’s all too scary and so overwhelming. I’m still trying to process all these feelings I put aside for years because I was dealing with the here and now. Now tomorrow is here and I just feel scared, alone and unsure what to do. Keep fighting the good fight!! You are an inspiration!

    • Marla, what is the conservatorship thing about? I’ve grown up with many emotionally & physically challenged family individuals (and in future will be co-helper to my brother in law….long story, adult who simply cannot live alone but otherwise fairly self-sufficient), Just wondering.
      Thanks for any insight 🙂

      • Hi Kristen, Conservatorship is in California (other states it may be known as a guardianship) and allows the conservator to still make decisions for the individual. Hunter is low functioning and mostly non-verbal so it is important that I am still there to advocate on his behalf. There are also limited conservatorships that apply only to financial matters or other limited areas (social, living, etc.)

  111. I’m in tears as I read this as this is our everyday existence as well, why do we feel like we have to explain our children! The minute I see that puzzled look on peoples faces I’m quick to jump in and excuse my daughter’s behaviour and explain why she won’t talk,follow directions, and acts out…I’m tired of it! Why does everyone have to have a definition? Why does everyone expect every child to be a cookie cutter kid?
    My daughter Julianne is 6 years old, and has been diagnosed since age 3 with ASD. We have been some of the lucky ones and have had a great team of understanding supportive people to work with, within her special needs school she attended, up to the public school she now attends.

    I recently had an experience which affected me more than I realized, I was walking down the hall to pick up my daughter from her classroom and I overheard 2 young kids picking on each other, the little boy said to the girl “you’re julianne”. It was a statement that broke me down to my core. I knew exactly what he meant and it shook me. I didn’t respond, although I wanted too so badly, it brought to life all the struggles that she is going to face everyday, and how much she will be judged by others. My heart hurts for her and all the children who struggle with this condition..it was not their choice!! On our bad days I do try to remember that there is a reason that I was chosen to be her mother and I have to trust in a higher power that they knew what they were doing! God Bless all the children and families affected, and also bless all those who don’t understand that one day they will and will help to educate others and stop the judgmental attitudes..these innocent children are not judging you they just want to be loved and respected like everyone else!! Big Hugs!!!

  112. I was not there and did not hear the tone of the comments made. I can’t help but wonder if this is the beginning of a desire to understand what is different about your daughter and other kiddos similarly affected by ASD’s. Perhaps these young ladies are the teacher’s, OT’s, Speech and Lang. Path’s., ABA therapists, or diagnosticians of tomorrow who can make such a huge difference in the lives of these special children. Maybe that speaks to my desire to see the best in everyone and the comments were indeed judgmental but maybe your daughter played a role in determining two young ladies career path’s.

  113. my child is not autistic but has other “challenges, MR, CP, speech impairment and epilepsy. Been asked that question many times..when gutsy enough have answered “Absolutely nothing, he is created just the way God meant him to be. There is a preacher who has cerebral palsy and one of his sermons is entiltled “I have cerebral palsy, what’s your problem/”
    http//www.silentmissionary.org/davidring.html. Check him out, He is inspiring , funny and speaks truth from Gods Word. First time I saw him I fell on my knees and cried and remembered the scripture “with God nothing is impossible.”

  114. never give up hope..you’ll be amazed by these amazing little people..And I would of told those girls that they were rude and educated themon autism.. just recently in a training class for a new job one of 2 of the instructors made fun of the short bus right away I piped in.. I don’t like that comment My son has autism and is disabled not cool… I got huge apologizes after the whole class laughed I was mad and the whole class knew it..

  115. God knows exactly what He is doing even if we don’t. Our children are not “God-damned”, they are God BLESSED. I feel this mother’s pain, but I have the peace and comfort of God’s touch that keeps me going…God gives us the strength to keep pressing onward. My child is Blessed and so blesses me every day. Thank you Lord for my blessings…

  116. I was saddened to read your blog… and I have heard the same comments many, many times myself in regards to my five year old son. And the stares, comments and assumptions that you must not be a “good” parent because your child is “misbehaved.” I work in a hospice and watch many people pass from this world every week – a reminder that things are not so bad for my son, but also a strong constant reminder that I will not be there for him forever. All the wishes and wondering, grieving and sense of loss that you mention, all have a place in my heart as well.
    I wish you the best, and please know that you are not alone out there – many of us are silent, unseen partners by your side.

  117. There is a small verse in a Waylon Jennings song that I answer this question with.

    Them that don’t know him won’t like him,
    and them that do sometimes won’t know how to take him
    He ain’t wrong he’s just different
    and his pride won’t let him
    do things to make you think he’s right

  118. the question should be… What is wrong with them? Your girl is as perfect as it comes, kind, unique like all of us should be. I am a parent of an ASD child he is 8 years old, and i am muslim too. So trust me my son and I had been discriminated double if not triple since I am divorced as well.
    Our children are great, and we loved them.
    I have the same fear as you for your daughter. There has not been a day go by that i did not ask myself what will happen to my son after i am gone. The truth is , he has no one. A close family member made a comment that he should be left to die. So yes i think about that every moment of my life, but I also know that God gave me this special child for a reason, trusted me to take care of him b/c God thinks I am capable to do that unlike these ignorant people who question, and being dumb about it.
    Just know that you have to have hope, and never ever give up wanting the best for your child. You are a great mom of an even greater little girl. God bless you.
    Aasiyah

  119. I worry about all the same things for my son. It is very upsetting to think that others might treat them unfairly or want to avoid them simply because they don’t know why they are different. Just wanted you to know I empathize completely. Enjoy your beautiful daughter!

  120. Pingback: Elevator Pitch « Run Luau Run

  121. I know it was hard to confront this exchange. My son is Autistic and I wonder these very same things every day. Though I’ve never caught anyone verbally speculating about my son, I know people are wondering about him. I find that I constantly place myself into the “interpreter” role in my attempt to coast him through social interaction… ugh.. I wonder every day if I’m doing the right thing.

    Thank you so much for sharing…

    • Dragonmommie….in a word YES! I do the same thing with my son. I’d rather see the light of understanding dawn in their eyes (along with the occasional bit of compassion) than to have “them” shaking their heads at him & I. We are their advocates, we must use our voices. It’s the only way to enlighten & spread awareness 😉

  122. Once again you have gotten into my head and picked out everything I think and worry about. It’s amazing.

    We are newly diagnosed (Sept 11) but I cringe daily when people talk to my 3 year old. He is a good size boy and looks like he should be talking and when he doesn’t they look at him and they look at me and I can see the questions on their faces.

    It breaks my heart.

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