innocence lost – the siblings


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Katie and Brooke ~ Photo by Kathleen Connerton

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Their innocence lost, they had to be braver and more generous than children should have to be. ~ Eustacia Cutler, speaking of her other children – Temple’s siblings.

My heart is breaking.

It’s too much tonight.

These kids – these amazing little people – carry the weight of the world on their far too fragile shoulders.

They live in a world that we all lament is too slow to evolve. Yet they have sped past it at lightening speed – self-actualizing like a trick of time-lapse photography – Behold! Before our very eyes the caterpillar, the chrysalis, the butterfly – all  in the blink of an eye because they live a life that demands that they have wings.

But sometimes the weight – the weight of this fast tracked evolution is just too damned much.

These babies are pushed into a wisdom so far beyond their years. We demand from them – and they continually surprise us with – a spiritual maturity and depth of understanding that leaves their peers standing in the dust on the playground. And while we celebrate their maturity – An old soul! A tiny sage! Oh, how grown-up you are! – we’ve handed them the double-edged sword of insight – that which makes the plodding emotional development of their peers a frustrating and terribly unfunny joke.

An understanding of human nature that forces their eyes to see in stark relief the cruelty that passes for interaction between children their own age. An integrity that forces them to stand against injustice where they find it – and don’t they find it everywhere? And don’t we? We, the people who have walked this path with their siblings, who blinked and winced against the blinding light that came upon us in a flash and forced us to see – to really, truly, painfully see – how we treat one another.

And as hard as it was to come to terms with our new lives under that light, we came armed with the accumulated tools of a lifetime. With some measure – albeit dramatically varied among us, but nonetheless at least some collected measure – of finesse with which to face the cruelty that we could no longer not see. And along with the finesse, the luxury of choosing with whom we will engage and when we will, Gambler style, know when to walk away.

But our kids – these siblings who see so much, understand so much, who have hearts eight times the size of their fear – they have no tools. They stand unarmed before a world of children that would chew them up and spit them out by lunch-time if it might get them closer to the cool kids’ table at lunch.

Fifth-grade girls try on different personalities like they’re changing their clothes. But our kids, our beautiful, wise, precious kids see through the flimsy facade. And they search and they search for any shred of integrity because they’ve learned – just as we have – that what’s REAL is all that matters. And they lean into friendships, diving deep, fumbling to find what lies beneath the facade. They give their hearts the only way they know how – in full. And when those hearts are carelessly tossed aside they crumble the only way they know how – completely. Because what we give so too we stand to lose. And practiced as they may be as defender – and no matter the relish or reluctance with which they play the role, they know it by heart – they have no defense left for themselves.

Because they know too much. They know that barbs disguised as jokes aren’t funny. They know that insecurity fashioned into ammunition hurts. They know that careless words leave indelible marks.

And with a sense of right and wrong so deeply entrenched as to be inescapable, they walk out into the world brandishing their pistol at the first sign of unfairness, injustice – their fingers itchy to pull the trigger. But the gun shoots blanks.

And in the middle of it all is the desperate fight to stay under the radar – not to draw attention because by God isn’t it enough that they live under the unbearably unpredictable spotlight of Oh My God This Is So Embarrassing – and yet – and yet! – every bit of their desperate desire for anonymity fights with their even more desperate need for attention. Because we all need attention. And there is never enough to go around.

And they leave the minefield at home and run headlong every day into a landscape dotted with overt and hidden perils. A land, where just as we do, they see it all. Because they, like us, can’t help but see vulnerability. They sniff it out like bloodhounds and attach to it because it’s what they know – and guarding it from danger is the role they play. And because their hearts are stretched so far beyond the boundaries of their precious youth, they feel so deeply the sting of knowing that each and every human being matters and each and every human being feels and thinks and sees and smells and knows what’s being said about and around and above and through them and they know – just as WE know that each and every boy is some other mother’s son and each and every girl is another mother’s daughter – that so too each might be loved by a sibling.

And by God, how would they want someone else to act in their shoes, on their behalf should it be their sibling who is being hurt by careless words and not-so-harmless harmless pranks? And always, always they take the perspective of the other because how often – how often? – do we tell them, show them, demand of them, that they must?

And where are THEY in all of this? Where do THEY live and shine and breathe and say Screw it, I don’t care what you think. Where are they to draw their OWN lines, make their OWN decisions, find, somewhere in a world that feels so far out of their control the ability to  chart THEIR OWN course?

Where do they get to stop pleasing and be pleased?

Stop worrying and be worried about?

Stop defending and be defended?

I know they will change the world.

I know that they already are.

But in this moment, it’s too much.

My heart is breaking.

These kids – these amazing little people – carry the weight of the world on their far too fragile shoulders.

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What Siblings Would Like Parents and Service Providers to Know

Sibling Support Project

52 thoughts on “innocence lost – the siblings

  1. Wow Jess you got me on this one…..our kids are very different than others and I don’t mean our “special” ones. I know how deeply my kids or should I say, young adults feel for their brother. When they were growing up, there were times when all we could do was try to keep it together. We are all on unchartered territory and hopefully Katie will come through it with her heart intact and her love for her sister that much stronger. Good luck and try to keep smiling….

  2. I am speechless.
    Just when I think you there couldn’t be anything else that hits me so close, you write this.
    This…is my son too. My oldest.
    The weight of the world. The desire to please all with the strict sense of right and wrong. The need for one safe haven but not finding it.
    Our kids need their village too. just like we have the safe spaces to let our hopes and fears out, our kids need that place too.
    Thank you for giving a voice to all the feelings I’ve been holding.

  3. Thank you so much for writing this. My son has mild autism but I am also an autism sibling — my grown brother has severe autism. You hit the nail on the head. Reading this was very freeing. Not long ago I found a note my dad had written to me when I was about 12 that I had never read closely until now, though how I wish that I had…it said that I didn’t have to carry the burdens I was carrying, that he wanted me to come to him and not try to carry things on my shoulders. I think if parents of special needs siblings could just do that sometimes, just let their typical kids know that sometimes it’s okay to be imperfect and be selfish and be KIDS, it can make all the difference. They will be different and more compassionate and empathetic and responsible and all of that…it’s the pressure of feeling they HAVe to be that makes the burden heavier.

  4. Thank you. I see this over and over in my little girl who is 8 looking out for her older brother. I am amazed time and again at the way she protects her brother and tries to shield him from anything that would harm him, when all she wants is to be like the other kids. I have seen her too many times get off the school bus in tears because of something one of her friends has said about her brother, yet she will jump right back to defend him with no hesitation. I am a big bear of a man, but my daughter is so young-yet I think she has had to be more protective of her brother in the school setting then I will ever know.

  5. Katie has been especially on my mind since that day (last week?) that you made a reference to a playground “something.” This is so well written but I know you would exchange all the well-crafted writing in the world to take the burden off her shoulders for a bit. You’re doing great, mom.

  6. Oh Jess. Very powerful for me and I feel your pain… though my little guy doesn’t have a sibling who is there for him like your Katie is for Brooke. I cry for that.

    With every “my heart is breaking” that you write, I cling even tighter to the steadfast feeling I have that it’s a blessing as well as a heartache. Even though Katie is being forced to grow up very quickly, you are blessed that you can see the person that she will most likely be in the many years to come. I am wondering how my little guy will develop…. but then he’s not the sibling. He is the focus on my and my husband’s lives and I worry that we are babying him too much. Some of that comes because we do not have another child who can share that attention maybe too lavishly showered on our only one.

    Jess, I know you and your husband are doing a great job with providing quality experiences for Katie (as well as Brooke). We can’t or maybe should not cry over the circumstances of our lives, but we work with them and they will hopefully work for us. In your case, you are indeed, also so proud of Katie and who she has become right before your eyes.

    I really feel for your observation of what Katie has to deal with in her social world, knowing things beyond her years. Yes, it’s a lot to bear, but at least she won’t ever be snowed by peer pressure. She still might feel it, but won’t be fooled. There are blessings here and you are blessed…. We all are.

  7. I can tell through your words that this came from a deep place. All I can say is thank you for this, so much, and that this was so needed today … much more than you can know. If I may, I might share this with Betty’s teacher, who just yesterday told me she would be referring her to an “at-risk” program because of her “perfectionism and low self-esteem.” That’s only at the very surface; she has no idea what lies beneath.

    You’ve just told her for me, and I thank you.

  8. You were not kidding when you said this post is a doozy. I see so much of this in my oldest…so much. My little man has had far too much to carry on his shoulders for an 8.5 y.o. Far too much…

  9. You have magnificently articulated my fears for my first born. He is the most awesome 9 year old boy you’ll ever meet, he will make some girl the luckiest wife in the world and be the best Dad ever but….its going to be a long painful road to get there. I worry so about how I can protect him. Can we get all of our sibs together somehow? They need to know they are not alone!

    Beautiful, emotional and so very important.

  10. Thank you. I have 4 year old twins, a boy and a girl. My daughter has autism, but not her brother… For a while I was having a hard time explaining things to my son. He understood that they share a birthday and that they were babies together but he did not understand why some things were acceptable for her to do but not for him. Last fall I felt very guilty enrolling him in an all day preschool program when he was only 3, but his sisters schedule of school and therapy was hard to keep up with and he was always bored waiting. I was worried that I was making him grow up too soon, 3 year olds should get to stay home and play all day- but now I see on many levels it was the right thing to do.

    At 4 they are both still very young but he understands that there is a difference between them now. He knows to set a good example for her to follow, and he is very protective of her. He is in all essence her big brother. I’m relieved that he’s beginning to see it, but at times I worry it’s too much for him too soon… But those were the cards we were dealt, as they say. I praise him for being a good example when he isn’t acting like a typical 4 year old, and thank him often for not participating in his sisters meltdowns. I also make sure to spend one on one time with him and I make sure he gets the same thing with dad since so much of our focus has to be on his sister.

    He still doesn’t know what the word autistic means, nor does he have any idea why his sister is so different, he just knows that she is. All the technical stuff will have to wait until he’s older. I hope he does as well as your daughter <3

  11. The siblings are amazing. I feel for them too. This strikes me as a bit mellow dramatic though. Perspective. There are kids being followed in the street and shot because of the color of their skin. There are children starving every day with no place to live. Somehow I don’t think that compares to my son, who is wonderful, amazing and also very blessed to live with a loving family (with a brother who happens to have autism) in a nice house in a nice town.

    • Michelle,

      To your charge of melodrama, I would say the following – tragically, kids hang themselves from the rafters in very nice houses in very nice towns every day because the kids in the neighboring very nice houses in the same very nice towns bullied them until they simply broke. So while I join you in lamenting the seemingly far more dramatic ills in the world, neither the horrifying fact that racism is alive and well nor the heartbreaking truth that children starve while we take abundance for granted takes away from the moment when my daughter – through heaving sobs says to me, ‘I used to believe I was a good person. But I’m really having trouble believing it anymore.’

      Jess

    • Perspective? My 4th grader (sib) unleashed years worth of penned up feelings tonight in total $^%# storm. It ended with “I wish I was dead. I don’t want to be alive anymore. You love (brother) more than me.” These kids have it rough, rougher than they deserve. I think Jess is right on.

  12. Dragonmommoe said it so beautifully, I’ll simply say I agree. And I hate that so many children, siblings experience this. While I know it affects every child in some way, you’re right; the siblings of children with special needs have to grow up so much faster and it is, indeed, a double-edged sword.

  13. I forget that my 8 year old isn’t my age.

    Just last night, she was doing a report. My husband said to me, sotto voce, “Wow, she’s so efficient at this thing. Remember when Miss M did the same project years ago? It was like pulling teeth.”

    That comment set off my sleep last night. First, because my Miss M can take as much damned time as she wants to do any project. And second, because my 8 year old should be allowed the freedom of not being measured or compared to her older sister. And vice versa.

    When we live in that world – where people act like their kids live here – these guys need to be held like precious and tender Faberge eggs.

  14. Yes to the siblings they need the love and understanding too. They grow up quicker and more compassionate and more vulnerable. They carry the weight too.

    Love you!

  15. Perspective. Knowing the horrors of the world, near and far, doesn’t make Katie’s pain any less significant or real.

    My Jack is to Ethan as Katie is to Brooke: anchor, defender, interpreter, provider of neurotypical moments that only a parent could love. When I see Jack navigate a group of older and younger boys all together, as I did last night, keeping his eye out for the younger ones, making sure they are included and not on the outside, alternately encouraging and teasing gently, turning to find the one who wandered away, my heart bursts with pride. But it also breaks with what that’s born of. He’s growing big shoulders, my boy, but I wish they didn’t carry quite so much.

    I feel the same for Katie. She’s be just as talented and lovely if she wasn’t an autism sibling, and through these posts I see how her experiences with brooke allow her compassion to shine. Still. It’s heavy opportunity cost.

    Okay, Jess, I think last week someone said beautifully “you don’t owe us anything.” So true. But, um, maybe a few more pictures of sidetable and sidetable? Does Brooke do Tickety?! My personal fav in the Blues Clues family.

    Karin

    • Double comment! Darn my irrepressible optimism. I just thought about Jack without Ethan. He wouldn’t be a hero. He wouldn’t have a handy reference guide to all things prehistoric, mammalian, or crocodilian. And he wouldn’t have someone to endlessly tussle with and tease and adore. Needed that to stop the tears. : )

      • Oh my goodness Karin…you just reduced me to tears again too. My boys need each other as much as they need to be themselves. Wow. Thank you.

  16. not enough can be said about the special-ness, the goodness of katie. she may bend, but she won’t break.
    “strength and honor are her clothing; and she will rejoice in time to come.” Prov. 31:25
    i love that girl.

  17. Your title caught my eye as I turned on my phone to check my e-mails and I had to read your post. Tears ran down my face as I read, for your Katie, for the lost innocence of my 13 year old son, and for all the others. How many times have they had to play a role beyond their years? Too many!

    Yet, there is one thing I know for sure, your Katie, my son, and all the others make this world a better place. Your Brooke, my daughter, and all of the special needs sibs give them a gift that their peers fail to see. They are able to see the heart of people.

    I hope and pray their hearts are not broken too often by this gift. God bless you for writing from your heart and sharing your beautiful words! May our children know less pain and more joy as they find their way in this world!

  18. thank you for getting this out. Thank you for giving us these words which we will be ruminating on for years to come. Powerful, *crucial* thoughts that help us all become better parents. Hugs to your sweet girl. Just a lot of love and hugs. xo R

  19. You took the words right out of my head… the words I couldn’t get together but usually come out in the form of tears.

  20. And this is why we decided not to have more children. My child was adopted. We were asked many times when we’d adopt again. We thought about it. But we had to wait. Then while waiting we found out our daughter (7 y.o. now) was diagnosed to be under the autism spectrum. So we got to work, went full gear. Then a year passed and we were asked when we’d add to our family. We weren’t sure. Then another year passed, b/c when you have a child w/ special needs life takes over and speeds through. And we were asked again. But we decided it wasn’t fair to the next child. There would be so much that second child would have to do, give up, share, deal with. It just didn’t seem fair. So we made a decision.

    It was hard.

  21. What a piece you have written ! I’m going to share this with family, teachers, friends and my two daughters who have always been there for their younger sister who has autism. I don’t think I tell them enough how wonderful they are for being there for her. Thank you !!

  22. Wonderfully and tenderly written. Thank you for sharing this and thanks, too for including a link to the Sibling Support Project and to our article. Not that they are a “magic bullet” but Sibshops can let kids know that they are not the only ones grappling with these frequently tough situations. I recently started the SibTeen facebook page and I am so glad I did. They’re incredible kids, and so deserving of support and recognition. (Our website has information about Sibshops, SibTeens, etc.)

  23. Jess, I cannot thank you enough for sharing…and for so graciously baring your soul. I too grieve for the weight that sits on my daughter’s shoulders, but I also rejoice in the incredible individual she is becoming because of what she has faced. She and all the other sibs will make this world a better place.

  24. As a sibling I have learned
    that I can be pleased by the smallest thing-a look in my eyes-that elusive rare grin
    that when I am worried I can take action
    that when I am a defender I can be a light in a dark world
    that I can live with a broken heart because I have witnessed my parents cheer the academic success of my younger brother and watch them coax non-existent language from my silent older brother–
    My sadness is for my older brother my joy is that the trials we have endured have given us courage, integrity , compassion and an ability to find laughter in the most improbable situations

  25. Ok …no tissue alert here…:) Having three daughters, Amanda is 23, and twins are about to turn 18, Ricki-Lee and Jessica. My twin daughters both have cerebral palsy, both girls are confined to wheelchairs, with one daughter being more severe then the other. The content of this post Jess was something I have been recently really thinking about. I look at my oldest daughter and see what she has been through being the older “healthy” sister, but also from Jessie’s perspective. Jessie has had her own disability to deal with, but often times the truth is I have been consumed with Ricki-Lee because she is so much more involved then Jessica. Now of course we meet Jessie’s needs as well but there have been many a time where she in fact had to be the “healthy” one while we meet the needs of Ricki-Lee. Jessie has had to become the “big” sister in so many ways while dealing with her own challenges. With that being said she is the most AMAZING person I know. She is also the most determined person I have ever known, graduating in June with honors in a public high school. She is going on to college planning to study medicine with her dream being to be a pediatrician. She is wise beyond her years and is so much more mature and has more common sense then many 30year old people I know. Thank you for your post today it just helped remind me that I am so proud of all three of daughters, but each of them have needs of their own. I have done the best with what I knew to do… and am thankful and in awe of the woman they have become! Again thank you for the reminder!!!!

  26. I prefer to think it’s their self-absorption lost, which is a good thing. And remember… no accidents. These kids were hand-picked for the job.

  27. Pingback: Hero, part two « Try Defying Gravity

  28. I have a 22 month old little girl and her older brother has ASD. I see her trying to be his little helper already and I often think of the future. I think you need a hug.

  29. Send this to the school……………………………………………Just send it! None could say it better, NONE!
    Love you,
    Dad

  30. Yes this nails it! My son is 10 he has Aspergers and ADHD and tourettes. Needless to say our homelike for our 16, 12 and 5 year old girls is disruptive. I know he gets a lot of attention and time spent on him. He can be annoying and demanding. It gets embarrassing when he throws a fit. I have heard his sisters say, I wish you were dead. It is horrible but thy get overwhelmed. It is heartbreaking. It takes a toll on a family.

  31. Wow thank you for writing this. I myself am a sib and I know what its like to cave under all the pressure, to be the defender and a pleaser. It is nice to know I am not the only one to go through this.

  32. As a mother of children (one with autism and one without), it is always a struggle to find balance in raising them up the right way. You have different expectations from both of them but most of the time, you put the pressure on the child without the disability, only to realized that they are both affected by it, differently but they are.Your blog is a window for all the siblings whose voice we don’t quite often hear because they are usually drowned by the loudness that autism has brought into our home. Thank you for enlightening those who haven’t realized this yet and thank you for speaking up for the children who we oftentimes we rely on be more understanding, to be brave and to be our rock in times of needs.

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