worry

Love looks forward, hate looks back, anxiety has eyes all over its head.  

Mignon McLaughlin, The Neurotic’s Notebook

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Worry often gives a small thing a big shadow. 

~ Swedish Proverb

*

I worry that there’s something we’re missing.

I worry that we see too much.

I worry that she doesn’t get enough attention.

I worry that she’s over-indulged.

I worry that we’re too hard on her – that we expect too much.

I worry that we’re too lenient – that we don’t expect enough.

I worry that some social cues seem to fly over her head – not like her sister, different. And yet.

I worry that she sometimes can’t seem to stay on task.

But she’ll read for hours.

I worry that when she struggles and says, “It’s hard for me too, ya know.”

That I don’t.

I worry that I don’t take her challenges seriously enough.

I worry that I over-analyze what is completely typical behavior.

For Heaven’s sake, something is hard for everyone, right?

I worry that I rationalize away what should be concern.

I worry when Luau and I turn to each other in the quiet moments and say it out loud.

I worry when we don’t.

I worry that she always seems just slightly out of step with her peers.

I love that she doesn’t go along with the crowd.

I worry that she is too rule based.

I am proud that she takes rules seriously.

I worry that she’s such a visual learner – that she says she has to see it to take it in.

I love that she knows what she needs.

I’m worried that so many friends have a child on the spectrum.

And then realize they have – have always had – two.

I worry that she’s so damned sensitive.

I think it’s fabulous that she is so damned sensitive.

I worry that she needs more than she gets.

I worry that I don’t see what’s in front of me.

I worry that I do.

I worry all the time.

Do you?

77 thoughts on “worry

  1. Wow, i loved this post….it is most def one of your better ones as a mom. Not because of the way its written, but for the words it contains. 🙂

    can u email me privately? i have 2 boys on the spectrum n i need a lil help.

  2. So right, we worry about all sorts of things and both sides of each!

    Just one little thing from your post here and once before about Brooke’s attention.
    I worried when we put M on medication for what appeared to be attention problems but was willing to try.
    It didn’t work because he doesn’t have attention problems, he can concentrate when he decides to sit and read or sit and draw or write. He reads a lot!

    We finally figured out what his problem was/is terrible working memory. On the scales he is at the 0.4% percentile, not even 1% of where he should be. He happily reads and absorbs fact books – on all sorts of facts. This puzzled us until we realised, he doesn’t have to rely on working memory – he reads it and stores it and moves on. You can’t do that with stories or following instructions because you need to retain quite a bit in working memory.
    If you can’t remember the first part of the statement, you can’t do what you’re supposed to do and then it becomes easier not to listen because it is too hard – that made him look like he wasn’t attending. Yet if the instruction is written so that he can refer back to it, he can do it (provided it’s within his capabilities.)
    As kids move up the grades, it becomes more and more verbal and the teachers write less and less and kids have to think and generate – but if you have trouble holding whatever concept first then it’s even harder to generate something as well – so 2 problems in one.

    So sometimes we worry about the wrong thing but how do we know until we re-examine and re-examine again.

    love the post as usual
    Wattle

  3. I feel that way too…… I spend too much time worrying – it’s like a yo-yo – sometimes you’re up and sometimes you’re down but always spinning….. I also think I see the spectrum all around me and wonder are we all on it in some way?

  4. Yes – When I am awake and when I am sleeping. But more often than not it inspires me to creative solutions and purposeful action. I hope the same for you and every parent who feels the same.

  5. My oldest did not get diagnosed until she was 8 when her sister was being diagnosed at 2. I always knew she was different, stubborn everyone told me but I knew in my heart what was wrong before they even told me. It took having her pull out her eyelashes for people to agree with me because it was so non evident to everyone she did ok in school even though she did not make friends she never caused problems outside of her family circle. Ease your fears ask questions take her to be evaluated. I keep telling my self I have 3 girls 2 are on the sectrum at varying degrees and yes I worry myself about my middle one at times but then again I see a lot of traits in myself too. And then I get goofy and sing that Meatloaf song…….Two out of Three Ain’t Bad. Lol cause most days if I am not laughing I would be crying. And if you did not worry Jess you would not be the awesome Mom you are!!!

  6. I think it comes with the “Job Description” of Motherhood. I even worried about you and sometimes still do–such as–you worry too much!

    I love you,
    Mom

  7. Yes! I worry about every.single.thing. that could possibly be worried about as well as things that shouldn’t…couldn’t… be worried about. I am thinking…hoping…that it is just what a parent does. (I worry about that too.) Do I worry too much? Not enough? …I justify my worrying by the fact that I parent in the Spectrum. Ultimately, that is where my buck stops. (Otherwise I would just have to be committed! Srsly!) We parent in the Spectrum. So…it’s OKAY. ‘Nuf said.

  8. I’m right there with you! And because of my obsessive worry, we just found auditory processing problems in my “typical” baby. Don’t doubt your instinct. You will know if there is really something to act on!

  9. Once again, you have hit the nail right on the head. I worry 360 degrees (in every direction) too. Just can’t be helped with our kids who need us to do “just the right thing” for them – but figuring out what that right thing is? Can take your head right off.

    I LOVE that Brooke knows what she needs. She is awesome. As is your whole family. But you know that.

    I would tell you to stop worrying, but that would be kind of like telling the sun to stop shining, no?

  10. Yes, I do too.

    I have always felt that the most trying thing about the (thankfully mild) version of the spectrum that our family encounters is that it robs us forever of the ability to explain away any behavior by saying “oh he’s just being a typical xx-year-old.” Everything must have an explanation rooted in brain wiring – even behaviors that truly are typical. This hyper-focus extends to our NT kids too, in that it colors the lenses with which we observe them.

  11. Jess, even when I most moved by your posts (often), I don’t tear up. But today I did. Because worry sits on my shoulders like a bird of prey. Because there is nothing I wouldn’t do for my boys, but as hard as I work at it, I’m not always sure what to do. Because as hard as it is to know what to do for my sunshine boy with the diagnosis, it can be harder to know what to do for my treasure, his big brother.
    I only know two things for sure. They will never doubt how much I love them. And, as a very wise friend reminds me, you can only do your best–and some days that’s not good enough. In other words: humility, and acceptance. I’m not sure why I find that a comfort, but I do.
    Thanks, as always, for your blog.
    Karin

  12. I worry all the time. My little guy’s only 2.5. I worry that we’re not doing enough. I worry where we’ll get the money to pay for it. I worry that he won’t get what he needs when he starts school. I worry that he’ll never have a friend. I worry that he’ll never have sibling. I worry aout who will look after him when I can’t anymore.

    Thank you, as always, for summing up what we all feel so beautifully.

  13. Oh my goodness, yes. And I love that we do. We are so involved with our son on a scale that some never have, and I consider it a blessing (most days 🙂 )!

  14. ALL. THE. TIME.

    Love you, Jess. Your worry is valid because that is what we do as parents.

    But My Love, it does not define your girls – it just defines the depth to which you would go to make their world as loving as you and Luau make their home.

  15. My mom used to feel that my sister was too rules-based. When my sister went to school in the morning, my mom would often say, “Be bad today. You can do something bad!”. It has become a family joke because once my mom wrote my sister a sick note when she wasn’t sick, just because she thought she needed a personal day, they went horseback riding and accidentally ran into the science class which was on a field trip.

    Anyway, my mom also often jokes that she never needed to tell ME to be bad. Some kids just need to hear that it’s okay to be a kid, and my sister was one. My mom is a really good mom, just like you are. You think about these things. Good luck.

  16. Yup. There are days when I worry and wonder if all five kids fit somewhere on the spectrum. Then there are days where I worry the two with a dx don’t fit afterall. Lots of other worries all mixed up in that too.

    There is worry that comes with being a parent.
    There is worry that comes out of fear, anxiety and our own insecurities.
    Then there is a different kind of worry.
    There’s the worry that comes from instinct. Deep in the depths of our “knower” we just know something is there.
    Only you and Luau can determine which kind of worry is there in those quiet moments. I hope you can embrace the “parent worry” and let it ride, take hold of the fear/anxiety/insecurity worry and triumph over it, and follow the instinct worry to get whatever answers/help/peace you need for both of your girs, for your family as a whole.

  17. Many of the same feelings I have about my NT first born. He’s the most amazing big brother in the world and I am so proud of him for that, but he has trouble making friends…. everyone likes him but no one wants him for a “bestie”. He’s never obviously on the outside socially, yet he is. Too mature because of what he has had to live with since he was a toddler? Maybe, but maybe not. Sigh.

  18. Love this post, specially today when things are not going well with Lucas, this new school year is been a nightmare!!! But always hoping for the better, thank you Jess for your words!!

  19. Not just worry – panic, some days. I try to ask myself: would I be worried about this if my neuro-typical child were an only child, and I had never experienced autism? In most cases, the answer is no. Just keep breathing. 🙂

  20. Speaking right to my heart! We are just beginning this journey with our 19 month old son. I worry all the time that I’m not doing enough. We’ve only been in the intervention program for a month and I feel so overwhelmed and lost. I feel absolutely ignorant. There is so much to learn!

    Thank God for a mama’s heart who does worry. It’s what drives us to continue on, continue searching, working and striving for the best for our babies.

  21. Without worry, we wouldn’t be mothers. It’s the combination of worry, love, respect, dread, pride, and all of those other emotions we are hit with on a daily basis that make us mamas.

  22. Wow! Couldn’t have said it better myself, thinking you’re in my head now! This time of year brings all our worries to the forefront, leaving all the accomplishments we saw over the summer in the dust. I have to control myself when I see him breaking down because they’ve moved his desk or cancelled recess due to the heat. Last week his OT came in unannounced and that sent him spiralling down bad enough for me to have to come up and calm him. To have watched my little man climb mountains this summer only to regress the moment school started makes me realize that this thing we refer to as Autism is way bigger than anyone really knows. The spectrum is huge, the therapy unknown, each child different than the next, and I fear that we have yet to even wrap our heads around it. I also wonder if we are just too close to see the solution and then I worry that there are no solutions at all, just this continuous ugly cycle we are drowning in…I’m with you, girl, all the way.

  23. I understand how you feel. I worry about Sarah regularly -am I giving her enough attention especially. Sandwiched between a special needs kid and a baby — hard place to be right now.

    You have a lot of sisters in worry, Jess. This parenting gig ain’t easy.

  24. Absolutely. We have twins so there has never been a time that we have not compared their behavior and worried. I remember one awful day when they were about three years old. We had just returned from an appointment with my daughter’s specialist, and out “typical” son started spinning just like his sister. My husband was due to go out of town the next day and he cancelled the trip due to our complete panic. My son is still quirky and out of step with many of his peers. But I’d say that decribes me and my husband too most of the time. My hope is that he finds enough other quirky people who appreciate him like we do.

  25. Yes. And I worry that I don’t have two, but one ASD and one sibling who needs something entirely different, and I’m missing it, and don’t know how to get those needs met. 😛

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  27. Oh Jess. What a worry to have. Having two ASD kiddos myself, I tend to see autism everywhere. I see it in my nieces, I see it in strangers toddlers. And it makes me think of a friend (kindergarten teacher) who said “I think all of us are a little bit autistic” and I was horrified and insulted that she was minimizing our challenges that way. But now in hindsite, I realize she is a little bit right. But one of the markers of ASD is whether it is impairing your ability to function in society. So maybe some NTs need some extra guidance to focus, to be less sensitive, to stop tics. But they are on the edges or fringes of the spectrum and they will be a-okay.

    Wishing you a peaceful heart and mind Mama.

  28. That all sounds just like me. My son was diagnosed with only sensory processing disorder but he has so many autistic-like behaviors, I’m never sure about the diagnosis. I always wondered why I worry so much about him and almost never about my other children. People think I’m overprotective of him.
    Thank you for this post, you explained me to myself. 🙂

  29. I read the most of worries in this post to concern Katie. Jess, this may be little consolation since I only know you and your family through your blogs and you don’t know me at all; I am also not a parent so cannot comment from that perspective. But every one of your point-specific worries describes me perfectly, particularly when I was a child but still now at 31: slightly out of step with my peers (friends as well as general age group) and independent of the crowd; rule-oriented (rules both social & self-determined) and prone to black-and-white thinking; sensitive regarding self, others, and circumstances of the world – and at times overly so. When I was younger, such were sources of confusion, frustration, and a sometimes outward but mostly inward sense of being different or otherwise alone in my ways. I am also visual learner and very nearly require the written word beyond that – it is often the case that I must read it, write it, or both in order to process and integrate it.

    You’ve described Katie as “typically atypical” before, and the words struck a chord with me; I’ve never experienced myself to be quite like everyone else – I could share much more about this, the particular challenges & experiences I had growing up, and the wacky (by some criteria) things that make me who I am, but the point is this: through books, anecdotes, and individuals, I recognize I have certain traits, thought processes, and approaches to things that seem consistent with those of individuals on the spectrum. But I’m not. There are other diagnoses with which I can also see parallels, but none of these apply to me either. I would simply say that I’m of a variety similar to your description of Katie: either typically atypical or atypically typical, I can’t quite decide which fits best. But I’m completely, 100% fine for it.

    Perhaps there’s some comfort to be found in what you surely already know – that differences don’t always equate to diagnoses. They do always make us who we are. Katie is the daughter of what seem clear to be two unique and gifted parents, strong in mind and spirit; for that alone and other evident reasons beyond, it’s probably fair to assume that her life and household experiences have been rather different from those of her peers. Some challenges come from the world into which we’re thrust regardless of who we are, simply because that’s where we turned up on the scene. And some are more specific to who we by our own nature as we strive to make sense of it all and to find our place in it. Just as there isn’t one autism, I think it correct to say there is no normal.

    Hopefully that’s not overstepping and doesn’t seem dismissive of worries so sincere and well expressed – it’s just that I’ve felt some certain affinity to your descriptions of Katie through many posts, and on that basis I do hope to offer whatever reassurance I may be in a position to give.

  30. WORRY – W. wonderful, O. or, R. rabbit hole, R. relies, on, Y. you.
    My son was not diagnosed with Autism until he was 4 years, 11 months old. I have guilt for not knowing the signs of Autism or not listening to my Mommy “gut” sooner. My worry for my children was always naturally there. But now, it is a much stronger force. Constant. I worry that I am not doing enough for my son – or am I doing too much? I worry for my typical daughter not wanting to “miss” any signs of struggle.
    My children are now 7 and 10 years old. My daughter (10) recently asked what I thought her brother would be like if he didn’t have Autism. I actually smiled and said, “Well, he still would be *Brian*. Funny. Loving. He makes us smile and laugh every day. He is wonderfully unique. Just like you and me.”
    PS: After my conversation with my daughter I re-read some links in your blog . Hairdryer vs toaster is now a printed copy in my journal. Thank you for your posts and for supporting Moms world-wide!

  31. Denise ~ yup! That about sums it up!

    Liz ~ I worry when I don’t.

    April ~ its ok i think if we didnt worry it would mean we didnt care or that we fail to see the seriousness of it all.worry means your doing your job and a great one at that!

    Raquel ~This was incredible. I have to say it definitely confirms that I’m not alone. Thank you so much because I believe as mothers of children on the spectrum I’m sure we question every move and decision we make and it’s so exhausting sometimes. But this post really lifted my spirits.

    Kimmerie ~ She is a brilliant, sensitive, loving, energetic, empathetic, mischievous, clever, funny, insightful, magnificent child and I am proud to call her my friend.

    Tammy ~ Yes, all the time

    John’s Mom ~ My friend has two kids one typical and one on the spectrum. She could have wrote this herself. She says she questions herself more when it comes to Brianna (typical) then she does her son on the spectrum! I only have John (Autism) but I’m going to share this with my friend , she will get this! ……This is about Katie or did I totally misread it. It’s early…….lol

    April ~ Now you have me in the shower worrying about what you are worrying about!!! Would you do anything differently if your worry was true? Just something to think about – not answer here.

    Kristie ~ I worry and worry. Lets just all worry together with a smile.

    Stephanie ~ I constantly worry. Especially now that we have a new baby. Not only do I worry about my son with autism, but I find myself worrying about everything the baby does or doesn’t do.

    Tiffany ~ Yes, for both my children. One with autism and the other without.

    Jean ~ The weight of that worry is exhausting.

    Melissa ~ I worry cause if I don’t worry than what is worring me will actually be worse if I don’t worry. LOL. I learned this from my Mom. God Bless her soul. : )

    Alyssa ~ yes,yes,yes….it is exhausting.

    Lisa ~ I feel the same way…

  32. All,

    Thank you so much, yet again, for showing me that I am not alone. I loved the ‘sisters in worry’. Hate that we are, love that we can be. (Brothers too.)

    xo

    Jess

  33. OMG– Every single one and it’s like a broken record over and over. Bless you for your gift. Through your word I find a great deal of confirmation and affirmation. I’m sorry we share this burden but glad to have found a voice that mirrors my own.

  34. Late posting today, but yes. Yes. Yes. Yes. I’ve seen my first gray hairs since Cymbie’s diagnosis, for real. And now having my baby in 3 weeks…I can worry about her too.

  35. Once again I’m in awe of your voice, and at the same time feel like I’m looking into a mirror. I had this exact conversation with my sister today on the phone. When I hung up, I called our social worker. I’m just so, worried. Thank you for posting this.

  36. The worrying is an unpaid full-time job! About 18 months ago I took the worrying to a whole new level! I began to obsess about every little detail and attempted to control (LOL!) situations. We were beginning the process of preparing to transition to middle school and deal with a sleep over camp for school. I couldn’t sleep and basically spent my days under a heated blanket on the couch (while my little lady was “safe” at school). My friends all knew if I said I was anywhere near that damn heated blanket, things were bad! Instead of realizing that my worry and anxiety was getting the best of me, I began to research all of my symptoms online. I then dragged my caboose to the doctor and demanded bloodwork. She ran bloodwork and claimed my thyroid was “off”. Went to endochronologist who ran more bloodwork and said I was “normal” (LOL!). Went to another doctor and was (finally) diagnosed with a severe situational (being a mom of my little lady) anxiety disorder. The anxiety was controlling my whole life. I had lost 40 pounds (yes, I needed it), I avoided all social situations. Isolated myself from family. It was miserable. I took my little lady for her neuro check-up and he noticed things were not right. After questioning me for a bit, he told me, in no uncertain terms, that if I did not help myself and make myself well and capable that there was no way I could possibly expect to help my daughter. That was the final wake-up call for me to get real help. This “PTSD” that we moms deal with on a daily basis (not “post” it is Present Traumatic Stress Disorder) is heartwrenching, but if we do not take care of ourselves, we are definately not helping our situation! So, ladies, take care of yourselves! Get some ME time. Take a bath, read a book, go for a walk. Give yourself permission to do this. If you have friends that say “I wish there was something I could do!” Tell them, “There is! Come over and keep an eye on my little one while I take a long long long bath!” Give yourself a mommy time-out and force yourself to stop worrying for 10-20-30 minutes. My lady is now 13. We have been going through this for well over 10 years now and there is one thing I know for sure; worrying has never ever, not even once, cured her autism. It has not made her talk more. It has not made her want to look me in the eye. It has never once made her tell me about her day. I love you Jess and I am so grateful that I have this community!

  37. I still worry about all those things you list, but about you, because you are my daughter and I will always love and worry about you.
    I guess I didn’t tell you that before you had your babies. Don’t worry about it however because you will stop having those thoughts, “NEVER”.
    Love you,
    Dad

  38. So glad I’m not the only one who can worry both sides of the same topic! My hubby says “all this worrying must really be working ‘cuz all the stuff I worry about never even happens”. Don’t know where he got it from, but always comforts me.

  39. Shoot. Just seeing this. Let me know if you ever want to talk. Been there. Finally breaking down and getting a different, well-trained set of eyes to take a look made all the difference over here. Love you..

  40. Sorry. Can’t agree, though I can commiserate.
    Äs an adult on the ASD spectrum, I have found, for myself, that I can not afford to worry. I can query, I can expect, I can ask, If I do do this, what would happen? But I can never worry about a future that has not happened. There are so infinitely many universes where that prediction could come through, but how – and when – will I know that that particular universe DID happen, as a consequence of what I did, you did, we did, they did? And when I kow, will THAT FACT matter? Will I be able to chage what I did?

    I won’t be ableto do that. I will always rely on my “parent’s wings”, although my parents would never know. I will always rely on the response I get from my peers, even if my bestest ever!!!111!! friends are absent from the tally. I will always rely on the dictionary that is between you and me, person to person.

    Are you willing to explain to me, why I oguht to bother with your interpretations? Are you willing to tell me, that’s not how my bfriendd took my comment? Are you willing to telll me, that why I lost my job is because I did not understand what I ought to say?

    And most of all, are you willing to stand by me, as I learn this anyway, nevertheless diminishing nor exaggerating what you said?

    After all, my life is my life. Will you be there, to be a part of it?

    I understand that it’s an enormous price to pay. I will probably never realize the consequences if you would chooose to agree, they are too big for me to grasp. But I kow what itäs like to NOT have these opportunities, and I know what it’s like to grow up, knowing there’s more to the world than you ever could see. Can you grasp that, I ask, back to you. Not to blame, not to guilt, but as a matter of fact.

    Warm, kind regards,
    Petri

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