it doesn’t change a single thing

~

To know an object is to lead to it through a context which the world provides. ~ William James 

Context can kiss my arse – Jess Wilson

~

Yesterday, my cousin asked me to elaborate on my post – to explain what I was feeling – why it was hard. This is what I said.

We were on such a high. We still are in so many ways. And we were watching our girl participate – really truly participate – and my God the acceptance and respect for her in that room – it was everything.

And we watched her in a bubble, you know? Comparing her to nothing and no one but herself – as it should be – as it MUST be. And we were SO incredibly amazed at the progress that she’d made and so taken aback by how far she’d come. I mean, Jesus, to be dancing with those kids? It was mind-blowing.

And throughout all of that was this thread of gratitude – for her tenacity and her indefatigable spirit and for you and your family’s generosity and love and the environment of acceptance – all of it.

And we were just so high in that bubble – so focused on her and only her and feeling like she was so – well, IN IT. I don’t know how else to say it.

And then watching the video – the part where the kids did the dance – it forced that progress into context.

Watching it, Luau and I both reacted the same way – separately – he was behind me and we couldn’t see each other. What we saw was our girl IN RELATION to others. And her differences were so so stark. And it wasn’t about the dance moves. It was everything. It was just – she was so, so … different. The way she stood without knowing what to do with her body. The confusion on her face. The – well, lots and lots of things that added up to a neon sign that said this kid is different. And she’s struggling to keep up with something that she desperately wants to be a part of. And that contextualization – particularly in the face of such unbridled joy – made for a really hard landing from a really high place.

It doesn’t take away from the beauty of the day. It doesn’t change a single thing about how much she has accomplished or how much everything you all did for her meant. It can’t. It just hurt like hell to see her in that way.

I hope this makes even the slightest sense. I’m typing as I walk.

I love you. And I’m grateful.

.

What I didn’t tell her was that Luau broke down after watching the second video. I wouldn’t have told anyone had he not decided to tell you himself. But God bless him, he did. He told you that he wept. That he was scared. That he wanted to scream, “It’s not fair.” And I hope that by saying it all that he freed a dad or two. That he told them that it’s OK.

It’s not in the script – the men falling apart. But by God, how can they not sometimes? Truly, how can they not?

Our girl proves time and again that her timeline is hers and hers alone. That expectations and so-called norms can kiss our behinds for all they have to do with her and who she is. That her developmental trajectory defies comparison to anyone else’s. That she is following HER unique path in HER own time.

So we do our damnedest not to compare her to anyone but herself. Ever.

As it should be.

As she deserves from us.

As we all deserve from one another.

But human nature is a nasty little beast. She delights in drawing our eye where we don’t want it to go. Kick and scream though we might, she doesn’t relent until we turn our heads to that toxic Comparison – until we see the differences, so damned stark. The struggles, the deficits, so painfully real.

And suddenly the progress – the beautiful blessed, shining progress that we saw in the safe vacuum of No One But Us melts at our feet in the face of the Comparison. And then the guilt – good Lord, the guilt – for seeing it, feeling it, letting our kid down by letting it all in.

And human nature laughs heartily at her own cruel joke.

That was our story this weekend. The one I half-told yesterday. In a moment of weakness, we gave in to Comparison.

It doesn’t change a single thing about how much our incredible girl has accomplished or will accomplish. It doesn’t change how proud we are of her, how much we unabashedly adore her or how grateful we are for our family’s love and support.

It can’t.

It won’t.

It just hurt.

39 thoughts on “it doesn’t change a single thing

  1. Oh man Jess, I am so, so sorry for this pain. I just read Luau’s raw post, too.

    I’ve been there, on the whipsaw of progress/achievement and the reality of autism that just won’t f-ing go away. Trying to armor up, and sometimes you just can’t do it.

    It sucks. It just sucks.

    Karin

  2. Humans are pack animals, I think. We want to see our offspring be safe in the pack. This statement,”she is following HER unique path in HER own time” is one you will revisit repeatedly. I know you know this. Jess, I enjoy reading your blog and the honesty of it.

  3. I am so happy and sorry all at the same time. I call this the “bubble pop” to my family and friends. When my daughter makes progress and does really well, it’s like we are all in a bubble, rising higher and higher. Until something happens, whether it be that damned Comparison or just seeing her in a different environment, or seeing her struggle to acclimate or that anxiety and confusion- then *POP*! We crash back down to the ground, left only with some broken pieces and no other choice but to get up, brush ourselves off, and start all over again. I know your heartache, it’s very bittersweet- on one hand you’re still so proud of your child, but you can’t help but feel like you’ve been slapped across the face. Nice to know I’m not alone, as always, thank you for opening up about this!

  4. I haven’t quite caught up with your posts but am trying. All I can say now is bravo to all of you – finding it hard to access some of your posts and they all come out on the far left of my page. Your honesty is both refreshing and heart-wrenching.

  5. Words cannot even begin to express how your posts make me feel… It’s as if you’ve taken all the thoughts and feelings of confusion from inside my head and somehow made them make sense… I too find it very hard NOT to compare my daughter to other kids her age… I literally have to tell myself EVERY day that she is her own person and does things at her own pace. You are an AMAZING mother and have inspired me in ways I never thought possible! THANK YOU!

  6. She will find her way, her very own, unique and beautiful way…. It may not be the path we wish she could travel, but she will get to where ever she is happy to be…. That path may be very bumpy and the scenery may not be what we always want to see – but she WILL get there, she’s already on her way!!
    Forgive yourself, Jess for giving in to bring human… We’re all allowed a pass once in a while..
    Big hugs!!

  7. Wow, wow, wow. You so poignantly described something I think we all experience in this journey. Seeing you put it into words brings me comfort that I’m not just a “horrible person” who can’t resist unfairly comparing my child to others. We had that moment yesterday. For us, this time, it was reversed though. I found myself so sad at the fact that my (typical) daughter was out in the backyard having a blast with a neighbor the same age as my son (with ASD). He wanted to play with the hose and watch the sprinkler, again and again, while the other two sat playing, sharing, creating. I felt the frustration, that this was where he was after two years of working and working with him on play skills. But then later that day we went to visit a speech therapist he hadn’t seen in 1 1/2 years. In that context, I was blown away by how far he had progressed. Again and again, it seems, we have to remind ourselves to keep our eyes on our child’s trajectory alone…but it’s hard sometimes. Thanks for your honesty.

  8. I know exactly how you feel. I look at each of my children and see how far they have come, but then I look at them mixed in with other “typical” children, and the differences are so, so visible. Try to hold onto the gratitude and the high that you felt, hard as that may be. So sorry that you are both feeling this, this way. Just know that we’ve been there too. Hugs.

  9. This is exactly how I have been feeling for the past few days since my niece’s birthday party. My son did great for his greatness, but when I would step back and watch him participating. I could see all the differences and to be quiet honest, the other children were not as kind as your family. So I have been upset and basically saying to myself autism really sucks.

  10. I’m really “feeling” this post. I am living something similar with my son right now. And it hurts. And I feel guilty. And I’ll keep pushing on, because as you said, the timeline for my son is just different…and he continues to exceed expectations compared to himself…and that’s the thing that I can’t lose sight of in these rough moments.

    Thinking of you.

  11. Another autism mom and I were talking yesterday as our sons attended the first day of their summer friendship club about this very thing. I described our experience watching our boy participate in the community ed basketball. I said it was like my insides were torn in half and fighting with each other. One half was shouting from the rooftops about how far he’d come, the other was reeling to see the stark contrast when we compared him to his peers.

    So, I get it. Love the way you write it all out, as always.

    xo

  12. Oh Jess. I feel you. I know this beast called Comparison. My daughter barrels towards her third birthday and I realize her Comparitive progress is only astounding next to a 2 year old. I will cling to ‘astounding’ with every ounce I have. My son is 4 and he can finally draw a hesitant circle; his peers write their names. Hang on to astounding. Hang on. Hugs to your beautiful partner on this path. Hugs.

  13. Oh geez, it’s Comparsion that still gets me every time. My son is almost 13, and not surprisingly he was having more fun at the pool yesterday with his 11-year-old brother and his friends while barely being able to acknowledge the boys his age who were there. Even little interactions like that have the ability to throw me off kilter for the rest of the day. I don’t think it’s possible to not compare. I’ve been trying for over 10 years. But I think I do bounce back more quickly from the grief and rage. I guess that’s progress.

  14. Just like the camera adds 10 pounds to your figure, it provides a different filter to any experience. It dosn’t make the live version any less real or wonderful.

    As for me, I’m leaving the blinders on, I only see my kid in the room and at the party, and don’t give a whit about how he is fitting in. He is not interested in being a part of something social, or so it seems and so he tells me. That is my biggest struggle, should I push him to participate with others when he seems to truly not want to, just so he can “fit in”. Am I harming him by letting him be himself – which is alone. I don’t want him to want to be alone forever, but how do I “fix” what seems to be his natural inclination? How much do I push a seven year old before he gets even more desparate for his space? Sorry to go off on a tangent.

  15. Oh, that comparison just sneaks up, and it is hurtful, probably because it comes at unexpected times, when you least expect it. For a moment, it just does suck out the joy. Mine came at the grocery store. My little girl and I were enjoying the trip, me telling her the names of things, her just enjoying the attention. Then we came upon a little boy, a good 6 months or so ypunger, walking and saying stuff like. “Dad, I’ll get the eggs for you!” I cried the whole day for my girl’s struggle. It is really hard to be brave all of the time. Peace and strength to you!

  16. Words.right.out.of.my.mouth.
    You articulate what is so difficult for me.
    Thank you for giving us parents a voice when we are too shocked, too tired, too embarrassed, to defeated.

    cg

  17. I watched my girl at her 4th birthday party this weekend. Many of the same emotions, I was over the moon with the progress she has made and sad at the same time as I saw how different she really is and how hard she has to work to keep up. Luckily 4 year olds are still pretty forgiving. Thank you for reminding me that I am not alone.

  18. Thank you for so clearly articulating the totality of this which is so familiar to me. We try so hard not to compare…to be all zen-like in knowing that our child is on their own unique path in this life. And we succeed at that for a while. Then, often out of the blue, we get side-swiped by the 2×4 of Comparison anyway. And then the second one of Guilt comes right behind it. Not fun. And so totally universal and human. Thanks to you and Luau for the permission your sharing gives me to feel all of it. Love you both.

  19. Pingback: I’m different, You’re different and my boy certainly is different… and that is FINE… until its not! | Mama's Turn Now

  20. that is one thing we can’t get away from that is really hard for parents of neurotypical children to understand. i love my friends to death, but sometimes all of their gushing about their children’s accomplishments is hard to stomach, especially when i’m just happy my son’s starting to socialize better and is no longer being combative with the school staff. my husband and i try to keep that perspective on him alone, his own personal timeline, like you’ve said, but then there are those pivotal moments that sneak up on you – a child your child’s age does something that you know your child will never do. it can’t help but break your heart. we are human and we are allowed those moments of grief as much as we are allowed to find joy in those other moments when our children do something that for them is extraordinary that other parents would find mundane.there is a balance in there somewhere, we just have to find it.

  21. As a mom of a newly diagnosed child with autism, I am starting to experience these feelings. There are days where I think, he’s totally fine! He’s just quirky, really smart, insert whatever here. But then I look a little harder and my heart breaks.

  22. We all know this feeling. It’s what I love about your writing – you say out loud all of those deep, dark tender parts that I dare not utter. Or even admit to myself .

    And you know, I still watch Miss M through one eye whenever she socializes with new people. It’s the “How did I do?” that she inevitably asks afterward that always kills me a little .

  23. Hi Jess, I love reading your posts so I’m delighted to nominate you for the Versatile Blogger award!
    Please visit my link http://wp.me/p1Qy0V-3FY to read more about this meaningful award and find out how to put the pin on your site and pass it along to other bloggers you feel worthy of nomination! Thanks for having a terrific blog! Kind wishes, Ronna

  24. The two of you are amazing. I don’t know why Autism has to exist but since it does and Brooke is unfortunately touched, I can see why the two of you were divinely chosen to parent her.

  25. As an autism dad that has had a breakdown or two, I really appreciated Luau’s post yesterday. I also try to be optimistic all the time but life doesn’t always cooperate. Thanks to both of you for sharing, and no, it doesn’t change a thing.

  26. Been there, and yes, it really sucks. I know the feeling of viewing our girl in that pink-and-pearl-colored bubble where she exists without expectations of “typical” behavior, and accepting her, respecting her needs and helping her to grow at her own pace are all that matter. But then, when I’m not expecting it, maybe when I’ve let your guard down out of sheer happiness to see her doing something previously unattainable, WHAM, I get slapped in the face with the undeniability of how different she is. For me, as Grandma, I think part of it is knowing that I won’t always be here, running the internal projector of love and acceptance, creating that safety zone inside the bubble for her. And that is terrifying.

    Be gentle on yourself.

  27. I wrote his on your husbands blog and I’ll share it with you Jess….you are human…yes its true and sometimes we have to let ourselves feel this stuff. We celebrate ever little step forward our children make and wince when they stumble and cheer when they do well beyond expectations. I think the hardest part is seeing our children with their peers and see the stark reality of just how hard it is for them. Its that reminder that “we thought we were heading on an Italian vacation with everyone else and somewhere along the way we ended up in Denmark….not expected but its got its charms.” *hugs*

  28. I understand your pain because I’ve been right where you are. But don’t lose sight of all that Brooke accomplished. She wanted to participate. She did participate. She was included. And accepted. For who she is. That’s huge.

  29. I’m new to your blog and I think you are great. I love your writing and thank you for sharing your experiences. Your kids are lucky to have such loving/caring parents. I’m glad I found your blog – it is nice to know that I’m not alone. I know that feeling of being confident and thinking that maybe she just needed some time, to ‘oh no, it is real and we are in it’. That sinking feeling of dread. Keep writing and I’ll keep reading!

  30. Oh, Jess. This post made me physically sick. Although the circumstances were totally different, it ended with that same awful feeling you described so well. While in DC, riding the Metro for just two stops…less than five minutes… I was holding my 14 year old sobbing, shaking, hands over her ears, rocking violently. The rest of us were having fun, but she was dying. I was already feeling guilty…I was selfishly insisting on this trip to see my brother for the first time in 8 years, but I never anticipated her reaction to the over-stim of the big city. She is a seasoned traveler…and we have never had trouble before…so it was shocking when she came apart so quickly. And, then, when I could not imagine feeling worse, it happened. I realized that the Metro car was full of girls just her age…lots of them. And they were staring. They were obviously on a trip to DC with a school group…away from parents, homes, all things familiar…and they were having fun. The trip on the Metro probably did not even register on their “stress radar.” It was a means to an end…a way to get where they were going. And, for my child, it was a trip straight to sensory h*ll and a full blown anxiety attack. At that moment, Comparison kicked me in the gut. I was already down on the floor and didn’t have far to go. I cannot imagine how it felt to fall.

  31. Just letting you know that I have nominated you for “the very inspiring blogger award.” By example you encourage me to share with honesty…not easy at times.

    Congratulations….*sneaks away*

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