do you?

***

You’d think I would get it.

I mean, hell – I spend half my time thinking about and talking about (and writing about) my daughter’s challenges.

I virtually live in the language of difference – or at least I live virtually in the language of difference.

So how is it that I’m still taken aback every time I see those differences in motion?

For God’s sake, how am I still surprised that my daughter really does have special needs?

***

I ran back to the school yesterday to bring something into Brooke’s room after drop-off. (An extra pair of pants if you must know because the ones she had on were threatening to slide right off of her non-existent hips.)

I poked my head in the door to let Ms N know that they’d be in her locker. In so doing, I caught just a simple snapshot of my daughter’s day.

Ms L was gently herding the class to the center mat for their morning meeting. Little ones came and sat down one by one. Stragglers were admonished with a subtly raised eyebrow.

Brooke was not moving toward the mat, nor was she being admonished for lagging. Instead, she sat at her table with Ms N plodding through her morning work.

Her worksheet was clipped to the large blue easel that helps her write. When her OT first installed it at her seat, we asked Ms N to ensure that its benefits outweighed its awkward and unwieldy presence in the room. Apparently they do.

She looked frustrated.

***

And there it was – Brooke’s world – or at least a part of it.

Her IEP in action – the preview and review and individual teaching. All of the supports – the easel, the grips, the extra time – they are giving her what she NEEDS. We’ve worked hard to put each and every one of them in place and I am grateful for them.

But somehow – even after all the hours spent thinking about them, strategizing about them, creating them and even meeting to evaluate them – I’m still surprised to see them in action.

You’d think I’d get it.

***

Do you?

Do you get used to it?

Ever?

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36 thoughts on “do you?

  1. I call it grateful and hateful. Grateful that Dev is getting what he needs and hateful that he needs it at all.

    *Sigh* does it get easier? I don’t know.

    xoxoxo

  2. No, not really. And I don’t know whether that’s a good thing or a bad one. Because I am ever hopeful–trying to hold a picture of the future, in which she is happy and settled and confident and successful. I keep trying to hold that picture, and then I’m surprised, sometimes, by how far the present is “reality” is from it. So on the one hand, I’m not being in the present. On the other hand, I’m holding the hope.

  3. It’s the cycle of grief- and it happens every time we see where our child is different from others. Difference requires a comparison to something else. At home, she’s not different- she’s who she is. You cope with her issues, you deal with them, you fight, and cry, and even, at times, marvel over them. But you don’t compare and you don’t grieve. It’s in the larger world, where children are moving forward in a crowd, that’s where the difference comes in. And everytime we see that difference, we grieve again.

    • Very well said!

      There are moments my oldest daughter is just like any other child. Then something sets her off being sensory, overstimulation of speech frustration and she meltsdown. And I’m reminded she is my special needs child.

      And yes I grieve.

  4. I think, in some ways, I am used to it simply because Nik was born under circumstances in which no one expected him to live, let alone thrive. Through the years, his physical limitations have been evident even to strangers. As they slowly fall away, I find myself increasingly startled by the evidence of the not-so-immediately-obvious manifestations of his needs. It stings for a moment (or a few hours. Ok, fine, days.) then I remember where he started and I feel a swell of pride all over again.

    But, easier, as Jen wrote? No, I don’t think so. Just different.

  5. reminded often…but still not used to it. sometimes, i’m even still surprised, as if he might wake up today and NOT have autism? guess i’m not alone.

  6. No. Just when I think I have a handle on things, I’m caught off guard once again. It is a cycle, as someone else mentioned. And an emotional roller coaster, to be sure.

  7. Reminded often…used to it never. And sometimes, I catch myself wondering why I forgot that debating any and all subjects, obsessions, and rage cycles, are never ending. Why would today be different than yesterday?

    Sigh. Autism isn’t for wimps. :-D

  8. My daughter doesn’t have support like that, but one day I walked in with an extra pair of socks because she had gotten hers wet walking to school in the rain. The teacher had them all lined up in the hall.Shyanne was lagging and not lining up. I caught a glimpse of how the teacher handles her. Without a word the teacher picked her up off the floor by her fore arm and pulled her backward into the line without saying a word to her. I immediately headed to the principals office and told him what I saw. Know what I was told? “Visitors, including parents, are to sign in whenever they enter the school for any reason”. I wonder, why? so the teacher can be forewarned? Geez!!! We are unschooling her from here out, just as soon as this year is over!

    I just want her to be normal, and then I now she’s not, What is “normal” anyway?

  9. Maybe used to it, but still very sad about it. My older daughter has autism (she will be 14 soon) and my younger daughter is “neurotypical” (11 yrs old, 6th grade). If it’s any consolation, the heartaches that go with social dilemmas for my 6th grader are very difficult for me to watch, and many times I am glad that I only have one child that will go through these experiences. I am not used to this at all-because it’s new.

    Mothering any child seems to be heartbreaking at times. But absolutely the bigger, longer lasting heartache is for my child that will never grow up to be independent. I am trying to get used to that now.

  10. Nope. I never get used to it and it only gets worse watching it as they age. The gaps at age 8, 10, 14, 16, and so on are crushing to watch.

  11. It is hard to watch. I remember that Miss M’s aide gave her a weighted blankie in the shape of an alligator, and it bugged me to no end every time I saw it.

    I’ve been happy lately. I couldn’t figure out why, really – I mean, it’s been a hard 9 or so years. (NINE!)

    I figured it out the other night.

    I thought about how many strengths my daughter has – yes, she has staggering challenges – but my GOD. How our kids get through a school day?

    Pretty amazing.

    I try to stay on that end of the fence.

    Hard to watch? Yes. Sometimes. When I go there, I remind myself to cross the street and look at it from the other side.

    I totally get ya, sister. xo

  12. No, I’m not at all used to it, even though the issues have been basically the same since infancy and toddlerhood in one of the boys. Sometimes I see them with their peers, or see Foster in his so-not-cool weighted vest, or hear about how they had to remove him from the room because his vocalizing was presenting a challenge for other students during an assessment, and oh my god it starts all over again – the grief that my child really does have autism.

    YES, he is getting what I asked for. Nope, can’t complain about that, but man, do I ever grieve it.

    ((hug))

  13. do you remember when they were babies and all the stuff we had to lug around-bottles, wipes, diapers, more wipes, toys-usually all nicely put in a HUGE bag, the infamous diaper bag. I can remember thinking when he gets older, no more stuff to lug. Well….guess what I still lug only its DVD player, books, allowed food…oh vey. Yes I do get it and always will.

  14. No.

    And moments like that seem to strike me when I’m feeling really good about where she “is” and what she has accomplished.

    And then the difference hits you like a brick.

    But I try to think of it this way. The things she needs “help” with now are so very different from the things she needed help with a few years ago, or a year ago, or even a few months ago. Those things from the past she has mastered.

    So now we move on to the next accomplishment. And maybe she’ll get there later than the other kids. And maybe we needed a different path to get there. But darn it – we got there!

    And it doesn’t matter where you start from. It’s where you end up that counts.

  15. No, I don’t think we ever get used to it, and you would think as a former educator I’d be more prepared… I am very happy however to hear your daughter’s IEP is actually being implemented correctly, kudos both to her school and to you for making sure that happened.

  16. No,I don’t think I ever fully get used to the differences. Hannah is nearly fully included with support and has come so far. I am so very, very proud of her! But the differences and challenges and sadness that goes along with that get to me at times. The differences really hit me when I listen to her interactions with her peers who are very kind to her and yet talk to her as if she is much younger.

  17. I know how you feel. At home it’s so easy and safe. It can really hurt to see the difference when we are out (library kids clubs for example).

  18. Oh it hit me hard today from inside the backpack! Once again the school goofed and sent another child’s paperwork home in L’s backpack. (I’ve mistakenly gotten progress reports, classwork, even an IEP page via backpack). In Liam’s self-contained classroom one of his peers from preschool is doing MUCH more advanced work – he can PRINT and answer Wh questions! To think how they both started off as 3 yr olds with no language, etc. and now this other child in the same class with the same teacher is doing SO much better than my son – well that really stings.

  19. I think I do a lot a denying the reality of autism because if I really stopped to think about it I wouldn’t be able to function.

    But the other day, at Sean’s inclusive daycare I met a boy who has autism AND MS. Wow. And then I said a little prayer for his mom.

  20. I think it gets harder for me instead of easier. I fall for the same trick every time: I notice at home the incremental improvements my boy makes, and forget that all the others who were far ahead are making even more improvements even faster…
    But then I do think like your commenter Eileen — I think that there are so many people with all kinds of struggles, and I try to focus on the good. You know I’m bad at it, but I do try.

  21. I’m so not used to it! This is why I keep picking up the damm bag of socks at the store even though it’s been 6 months since she’s worn socks. She says “no socks” in that special tone we all know better than to challenge. Yet every time I’m there I go to the sock department and pick through all of them; feeling seams and deciding on fabric texture. I don’t get it. I KNOW those socks wont work and I need to buy the special (and oh so expensive) seamless ones made for our kids. So why do I keep returning to the sock department? I am not used to it and I think part of me never will be. You know what? I think that’s okay.

  22. I don’t think you ever get used to it. But I don’t think that’s a negative per se – in my view is a reflection of the time, energy, effort, LOVE that goes into everything Brooke – your expectations are (and should) always be high. I think it would be strange if it didn’t bother at least a little. And that it does hit you(all of us) says nothing about how proud we are of what our kids have done, how far they’ve come and what it takes to get through a day.

  23. You threw me for a loop with this one, yes, no, yes, no….it depends. Yes I get it, too many times volunteering in the classroom have showed me beyond doubt that the differences are extreme and undeniable. Not at first, but if you watch for a few minutes you can see what others don’t. The realization has made it easier for us to decide to attempt to de-mainstream for a while. Heading into 6th grade, sitting in the mainstream classroom is just a social exercise (the academics may as well be rocket science) and I know she could learn more in a small-group computer based classroom. Yes, it’s so much easier at home where she can just be herself.

    I agree with Caleb’s mom, Autism is not for wimps!

  24. Hugs girl, I know how you feel. I don’t think we will get used to it, but maybe we will come view it differently one day? Only time will tell.

  25. Ah yes those differences. I get to go see all those differences this afternoon, Brianna is having her bridging ceremony for Girl Scouts going from Brownies to Juniors. I am super excited for her but I also know it will make me sad to see her to the side while all the girls go off and do whatever it is that 9 year old girls do. I am just glad most of the time that she does not notice the difference.

  26. I don’t know about being a parent. But I do know that I get used to it – my cerebral palsy, my anxiety disorder. The things Brooke needs are the things she -needs-.

  27. I don’t know. “Ever” is a long time, and we’re so early in our journey yet. I think that the noticings will likely get worse as she starts school in the fall.

    I wonder if it makes a difference how big the differences are (if that make sense). Like the kiddo mentioned above with autism and MS both — how does his mom experience it, I wonder? Are more-extreme differences harder to forget, or is the trick-ourself thing in full force no matter what the degree of difference? Again, I don’t know.

    But virtual hugs I got plenty!

  28. It sneaks up on you, a lot.

    Like you, I notice it most away from home, especially at school where they really are standing next to someone exactly the same age. It hits me when I see them at recess at preschool, when all the other kids are running around playing simple games or just chasing each other and laughing. My boys are not. They are usually off to the side, often standing at the edges of the fence, simply looking out (and probably thinking about escaping).

    The differences are there. They can be big sometimes. And it’s always hard to watch. But what I always keep in mind is that they are differences my boys don’t see, at least not yet. They are happy, off on their own. They don’t see the other kids running and laughing and want to be part of it. They are simply happy as they are. They laugh, often at something that comes from inside themselves. Right now, they are still happy and oblivious. So I try to be, too.

    Hugs. And love.

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