believe

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{image is a photo of Roxy, Katie, Brooke and Ms M on our lawn, 2009}

When I first started writing, I was amazed to find that there were other people out there in the ether who .. well, let’s just start there. I was amazed to find that there was anyone out there.

Among the blogs that I first I read were those of parents (all moms back then) whose kids were further down the road. And I watched them. Carefully.

In some cases, what I saw amounted to a how-not-to manual. The ones who shamed their kids for their differences, who made themselves pitiful protagonists in what should have been their children’s stories, and above all, the ones whose anger and resentment bled onto the screen, leaving a toxic stain on every word they wrote. I quickly discovered that those types of blogs just weren’t my cup of tea. Or jet fuel, as it were.

But then there were the others. The ones who devoted at least as much of their time and energy to discovering, fostering and celebrating their children’s gifts as they did to lamenting their challenges. The ones who were doggedly determined to bring awareness not only to how difficult this life can be but to how beautiful we can make it. And the ones who reached out a hand and said, “Believe.”

They were the ones who got me.

I was amazed to find that there were people out there whom I genuinely liked, to whom I could truly relate, and, ultimately, with whom I would forge some very real friendships.

There was one in particular who, long before she was a friend, was a hero. Whose daughters I began to cherish as my own, in whose stories I became wholly and deeply invested. And by whose urgent and insistent optimism I became transfixed.

Drama Mama wrote about Ms M not just with overwhelming love, but with reverence. She respected (and I’m only using past tense because I’m talking about her past writing) her. She reveled in her – not just in her accomplishments, but in HER. In who she was becoming and in who she was at the very moment at which she was inviting us into their story. She wrote about her struggles and she wrote about her victories over, around and through them. She wrote about her navigating friendships, handling summer camps, reaching out to others, performing on stage, demanding authenticity in a world that offered up far too much pretense for her comfort.

She wrote about her daughter doing things that were simply unimaginable for parents like me. And every single time she wrote a post, she told us to believe. She told us that we too, would be there someday, looking around in amazement and at our kids with wonder.

And after all these years, there’s something that I have to say. Come closer, I really don’t want to say this loudly.

I didn’t really believe her.

I’m going to let that sink in for a minute, because it’s not something that I’ve ever said out loud.

I didn’t really believe her.

You see, she would write about her conversations in the car with Ms M. About how they would analyze an interaction that had taken place earlier in the day. She would tell us how Ms M, so beautifully and poignantly self-aware, would tackle it from every angle, take it apart and meticulously put it back together again. She would describe how they would talk and talk and talk until Ms M said that she needed some time to not talk for a while.

And I would devour every word, starved as I was for faith that someday, my girl and I might … talk. And I would roll around in her stories and toss them up over my head and into the wind and then I’d watch the words come floating back to earth and I would try – I would try and try and try to believe. Because she implored us, her readers,  in everything she wrote to BELIEVE that it was possible.

But I didn’t.

Ms M was not my girl. My girl didn’t talk in the car. She barely talked. When she did her language was entirely scripted. We were light years from carrying on a conversation about … anything no less discussing the nuances of social discourse. If she was self-aware, I couldn’t see it. Cues that she needed time to decompress were physical not verbal. She screamed.

I was happy for Ms M, but she was not my girl. Autism is one word, but there is no one autism. Ms M didn’t have my girl’s kind of autism, I reasoned. She couldn’t. Not with all that she was doing and all that my girl was not. My girl would never be Ms M.

I reveled in her victories, I just didn’t believe that they could ever be Brooke’s.

And you know what? They weren’t. They won’t be. Brooke’s victories will be her own. Yours will be your own and your child’s will be theirs. But I’ll be damned if I’m not here now, writing about my kid, and knowing full well that some of you, no matter how much I implore you, don’t, won’t believe in the possibility of your child doing some of the things that Brooke is able to do. And I’m here to say that I get it.

Because when we see a kid doing things that are currently beyond our imagination for our own, we say, “But that’s not my kid.”

I can hear it in my head as I write …

Singing a solo in her school’s winter concert? Give me a break. That’s not my kid. My kid barely talks. Or doesn’t talk at all. My kid appears to be totally unaware, completely unengaged, totally disinterested. My kid doesn’t even respond to his name.

Neither did mine.

I want to stop to make sure that made it through.

Neither. Did. Mine.

If there’s one thing that this journey has taught me it’s that every individual progresses in their own way and on their timeline. I have no idea what you or your child might be doing in years to come. But neither can I, nor you, know what they are not — or will not –be capable of doing in the future.

I know my kid isn’t yours. And yours isn’t mine. But neither are they now who they will be in the future. None of us is.

Everyone’s successes will look different, but they will come. The only real limits on what’s possible are the ones we create, or at the very least, accept.

So join me, won’t you?

Believe.

 

 

 

possible

{image is a photo of Brooke dancing on the bandstand at Miss Marjorie’s movement class at Children’s Beach on Nantucket. A text overlay reads, “If we don’t believe that anything is possible for our children, who will?”}

40 thoughts on “believe

  1. “I know my kid isn’t yours. And yours isn’t mine. But neither are they now who they will be in the future. None of us is.

    Everyone’s successes will look different, but they will come. The only real limits on what’s possible are the ones we create, or at the very least, accept.”

    Great post, Jess.

    Love you,
    Mom

  2. Yes, yes! A thousand times yes! Pardon me, but I have to bookmark this to read again and again and again.
    Thank you.

  3. I am a mom of a little boy on the spectrum, he will be 5 in just a couple of weeks. I also started a blog more for me to keep a record, so to speak, of our journey. You help me so much; in my journey along with my blog. We just had our annual IEP meeting and even though my team is excellent and we received everything we wanted and needed I still left feeling sad. Along with all of my sons progressions were the areas he struggles with…I seem to fixate on the struggles and forget to look at the “hooray” moments. Thanks for sharing your journey with people like me who need a reminder every once in a while to take a minute and see that there are possibilities and his struggles will quite possibly turn into those “hooray” moments!

    • I know you are not, but I felt like you were speaking to me when you wrote this. I feel connected to your comment. My son will be 6 tomorrow and I KNOW exactly how you feel. That used to be me. Things are still hard sometimes, but things have changed so much for us in the last couple of years and I really want you to believe that it can and will get better for you and your son also.

      • Thank you so much for your comment! I am going to follow your blog. It it hard but one thing I am learning is there is always hope and I should NEVER underestimate my child. My blog is ourjourneywithjake on WordPress. Thanks again!!!

  4. I believe that my children are capable of living lives full of love and opportunity and happiness. I believe their lives are just as important as everyone else’s. I believe I was meant to be their mama, even though many days I believe they deserve a much more patient and understanding mama… I believe their potential is unlimited; that what we dreamed for them before their diagnosis is still achievable; that they are going to change the world. They’ve already changed mine. I believe in them whole heartedly, fervently, because they are fearfully and wonderfully made; because they deserve to have every opportunity to shine in this world; because I love them so. I believe there are no accidents, either, because last night was a dark night for me, when I lost focus. And here this morning in my inbox I found a very straightforward message from you: believe. I believe we are all on this together. I believe this blog is changing the world for my children. I can’t ever put into words my gratitude.

  5. so true! My son had his holiday concert recently and I was really, really nervous about how my son would handle it. He’s five, only has a few words he uses occasionally and freaks out in big rooms crowded full of people. Yeah, not a great combination. We practiced his song and the dance movements over and over again and I talked about what was going to happen and tried to prepare him as best I could, but yeah hard to know what he was taking in.

    When his performance time with his class came during the concert, he didn’t sing or dance, but he sat down very calmly on the stage and watched the others perform and joined in the very last dance move. Then when his class’s part was over, he left with the rest of his class, sat down next to his teacher and quietly and happily watched the rest of the holiday program.

    And I was so proud and happy for him! He got to participate in the way that was appropriate and meaningful for him and he enjoyed it! Not just his part, but watching everyone else. That was his victory and it was just how it should be for him and where he is right now.

    Jill

  6. Oh, I am joining you. I am definitely joining you.

    I’ve been blogging for ages, but only just braved a post that directly mentions my daughter’s diagnosis. I’d love it if you had half a minute to read it.

    Your posts always give me lots of hope and lots of things to make me think.

  7. Thank you so much for this post, Jess. It really spoke to me. I’m in the position you describe yourself in years ago: my son and our family are still so new to this journey, and I read about Brooke’s accomplishments with wonder and amazement. And, although I never realized it until you articulated your own feelings, I didn’t really believe you either, that my child will make amazing progress someday. We’re still in the stage where we rarely leave the house because I worry that the sensory overload of being out in public will make my boy panic and hurt another child. I know it won’t be this way always, but he’s so little that I really don’t know what to believe in and take hope from. So the fact that you spoke to my doubt means a lot, and opens me up more to the kind of hope you have.

  8. How you know exactly what to write just for me (ha!) is beyond my understanding. I only know that this morning, before reading your blog, I set up four gratitude jars (one each for my husband, my two daughters, and myself) to keep throughout 2014 — and I started them each off with two blessings we’ve had in this new year. My hope is that through all the struggles, when we need a lift, we’ll only need to look as far as the jars on the counter — our own testimony to what’s good in our lives. I’m not sure if my family will go for it — but I will be the keeper of the record, trying to stay focused on our progress and on the good, and will fill these jars. I know we can’t compare ourselves to others and can only measure our successes by looking at where we’ve traveled. Today’s blog post was a lovely reminder of that. Thank you.

  9. Thank you so much for sharing this. When my son first diagnosed, years ago, stories from families (like yours, like Ms. M) helped me to rally, to push through the rough days and imagine a future in which my kid could do as yours. As my child grew older, though, I became discouraged – compounded by the notion from professionals that “early” intervention was the key. As my son moved beyond those target years, I carried the sinking feeling that windows and doors were slamming shut. I, too, listened to others with growing disbelief that my son’s story could ever be the same. I still have days like that. But as my child hit his teenage years, my attitude shifted and I learned to really and truly throw out the age and developmental expectations. I revel in witnessing my son’s new growth as he begins to blossom into a young adult, into his own person. I still can’t have the conversation with him that I so desperately want to have, and I still often get that ping of longing (or is it jealousy), especially when I read about children younger than mine who can interact and speak and sing and share to the level that yours do. But, your families’ stories also help me to practice believing that we still have a “someday” out there, and for that, I thank you.

  10. The successes look different, but they do come. Oh, do they come. It is easy to feel overwhelmed and discouraged, but time and time again, as I start to fall down that rabbit hole, something magnificent happens, and it pulls me out. My son’s successes aren’t always huge “breakthroughs” but they add up and build up and suddenly he’s asking to play with friends and requesting games to play with his brothers. 🙂 this is a great post.

  11. I don’t have any profound or wise comment to leave. All I have is thank you. Thank you for seeing us. Thank you for seeing yourself in us and saying it. Because these cold dark months are taking their toll on my little crew here and it is so needed to have a reminder that spring will come and that these precious littles will grow up to be exactly who they are meant to be. Thank you. xoxo.

  12. The thing is… look at a three year old running around the living room with his arms spread wide, pretending to be an airplane. Look at him objectively. Is there ANYTHING in his current behaviour that shows him growing up to be a successful TV presenter? Or a doctor? Or a marketing genius? There isn’t. It’s just that we assume kids to behave like that, same as we assume that kids will eventually grow up and act like other adults. But if you simply look without assuming, there’s nothing there that justifies that belief.

    Believe in unseen potential. Just because it’s not visible yet, doesn’t mean it will never come. It’s hard, I know. But just because our potential is at a different angle from the rest of the world, doesn’t mean we don’t have any.

    • That is the big stumbling block for many, isn’t it? The preconceived notions about what childhood is supposed to look like and what sort of timeline people generally tend to expect all children will develop on. If one can step away from that, really let go completely of all those expectations and just be in the moment, you can find that just because your child’s developmental timeline may seem unfamiliar and unpredictable, it doesn’t mean they are not developing at all. So much is happening all the time, so much that most of us miss, actually, because we are so preoccupied with what we *think* should be happening at any given moment but are not seeing.

      “But if you simply look without assuming, there’s nothing there that justifies that belief. Believe in unseen potential.”

      So very well said… agree with you SO much on this. Forget what you thought you child would be, and start reveling in who he already is, and suddenly a lot of things seem possible. ❤

      • I totally get that stepping away from expectations is easier when it’s “I want my child to be a famous writer just like me”, even though that carries a lot of hurt too when your child isn’t even interested in reading. It’s a lot harder when your expectations are “I want my child to talk.” It doesn’t seem like much. But talking is incredibly hard, even for someone like me who’s navigated the NT world pretty successfully (if I say so myself). I still communicate better in writing than I do in person. So when you let go of that expectation, beautiful things can happen. Everything becomes a miracle, instead of something that doesn’t meet your standards.

      • Yes, autisticook, I get this point too about how hard it is to let go of the “I want my child to talk” scenario, as my 6 year old’s spoken communication is reliable only about 1 out of every 200 times he tries… (lots of “swallowed” words, and garbled speech sounds) So, for all practical purposes, he cannot talk, and would be categorized by most as non-verbal.
        I remember vividly the moment I had to let go of that particular worry, as I had not given it serious form in my mind I think, until I heard myself say the words out loud to another person who was inquiring about my son, “We have to accept the fact that it is definitely probable that Lucas might not ever be able to reliably speak.” What a kick in the teeth that was at that moment – it was like all of the frustration my son might encounter throughout the rest of his entire life concentrated itself into one singular moment of intense sadness and worry. As it is, he already experiences great frustration about it, even though he has found very many other clever ways to communicate with us, and even though it is infrequent (and perhaps even because it is infrequent), it breaks our hearts every time this frustration manifests itself.
        I guess I must point out that I have not decided he never will talk and that it is hopeless to believe he ever will, but just that I have decided to not dwell on it. So *my* letting go involved letting go of my fear and worry about it, the “expectation.” So, as you said, it will hopefully not seem to him that he is disappointing us somehow, and that, if and when it ever becomes something more easily managed for him, well… that will be a beautiful day indeed. 🙂

  13. Grateful to have you “further down the road” to watch. It has made all the difference in how I view our own path down this bumpy but beautiful-if-you-really-look road. Thank you again, and again, and again…

  14. is drama mama still writing? I cannot find her blog? I would love to see what further down the road looks like for her, as my daughter is 17. Thanks!

  15. This is not exactly related to this post, but I can’t find another way to get in touch with you.
    I worked for years as a private therapist for children with Autism and their families. I now work in the school system. I teach in a special support room in a high school for students on the spectrum.
    Last semester we earned a grant that allowed us to purchase the new PEERS curriculum for our students. One of the things we would like to do along with the PEERS curriculum is help our students advocate for themselves. We plan to spend the semester helping them understand and put into their own words. We would like to give them the opportunity to contribute to a dialogue of their peers on the spectrum.
    I have been following your blog and Facebook group for a while now and I believe I remember you speakng about a website/forum where they could do this.
    Please email mesome great ideas!
    Thanks.

    • Self advocacy is ALWAYS related 😉

      I’ve written a lot on the topic, but don’t really know of a website per se. I love that you’re encouraging the kids to advocate for themselves though. There’s nothing more important. I’d suggest reaching out to ASAN (the Autistic Self Advocacy Network.) I’m sure they will have some resources / ideas.

  16. Reblogged this on Coloring Outside The Lines and commented:
    I can’t contain my emotions I feel as I read this post. I think about my own son and how far he has come in four years. I am so grateful for the reminder to believe in the Super powers that my Chase believes he has.

  17. I love this. I’ve read it a few times now this morning because there is so much here. Like how I don’t know Drama Mama but you just made me love her. Like how when you say before she was a friend she was a hero, I’d say I could not speak truer words about you. Like how grateful I am for all the words so many put out here into the inter-ether for those of us who need a touchstone of belief. Like how amongst us all belief is a bit of a currency that we give and receive in accordance with who needs it and whose got some extra to share. Like how if life hadn’t brought me a parenting experience that was about believing I might have made it about expecting and would have missed out on so damn much magic.

  18. Jess I just love this … I’m a hit or miss blogger … I promised myself that when I blogged I would hit the truth and miss the hype. My guys aren’t just autistic, but their autism is a HUGE part of who each of them are.

    We’ve celebrated, cried, fought, and most importantly, kept moving forward through the years as each of them has struggled and found their own way, continue to find their own way.

    This year my 14-year-old sang on stage for the first time ever. I didn’t think it was possible to feel THAT blown away by my child, but there it is.

    THANK YOU for the hope you give parents, for keeping it real without being depressing, for celebrating who your kids are. You really are an inspiration to many of us parents (bloggers or not!). Each of our kids is a unique and marvelous gift to be treasured, and they are awesome.

  19. I just had a meeting with my son’s Support Specialist 3 days ago. As we reviewed our goals for the upcoming year, I burst into tears once again as I said our goals were the same as they have been for the past 4 years….. communication & language. “When will I be able to have a conversation with my son???” “When will he be able to tell me about his day??” “When will he be able to answer a question with something that ISN’T scripted & memorized??” Then I read this post today & as always, it was just what I needed to be reminded of. I have to CHOOSE to BELIEVE and have FAITH that “Everyone’s successes will look different, but they will come. The only real limits on what’s possible are the ones we create, or at the very least, accept.”. Thank you, once again! I WILL CHOOSE TO BELIEVE!

  20. Thank you Jess. The other night I finally brought myself to read “Welcome to the club” in its entirety. For the first time I allowed myself to cry. Ugly, gut wrenching, snot spewing tears. I didn’t know how badly I needed to… I have been strong, determined to fight for my little miss C, unwilling to allow the pain I was feeling to interfere with her journey. The journey is new, I’m still scared, but that crying session seems to have transformed this Mama… The following morning, for the first time since the diagnosis, it was ok, we were going to be ok. After reading this post, I feel even more hopeful. You are an inspiration to me, and I thank you.

  21. As an autistic young adult who’s been reading (and enjoying!) your blog for a while now, I feel like it’s impossible for me to exaggerate how important I think your insights here are. So I decided to write an absurdly long comment detailing exactly why the way you talk about this is awesome:

    As an autistic person, I know how difficult it can be to hold out hope that someday, somehow, someone you love will speak your language back to you. And it is similarly valid and important for neurotypical parents or teachers to feel hopeful about their relationships with others (autistic or not). So, to parents: Yes, please; feel hopeful for your child’s future. Believe that, given the appropriate accommodation and validation, your child can be a happy, fulfilled individual. Believe that they are capable of unlimited, unpredictable growth.

    But, at the same time, please, please, please examine the sources and the structure of your hope. Do you believe that typical behavior and communication reflect the “natural” conclusion of a universal process of growth? Do you only consider a change to be “growth” if it results in your child acting in a way that you find more relatable or comfortable? The reason it is important to “presume competence” is not because all people are capable of displaying “competence,” given enough time and encouragement. We must presume competence as a way of acknowledging that competencies exist independent of our ability to identify and interpret them.

    Please, do not presume that all people are capable of social “competence” given sufficient support; instead presume that all people’s sociability is somehow a competent one, even when you do not understand it. Please, do not presume that all people could learn to converse “competently,” given sufficient support; instead presume that all people do converse, even when their responses or reactions fall outside of communicative norms. It is important to spread the kind of hope you talk about, a hope-as-presumption-of-intrinsic-awesomeness, because differences are valuable and “normal” definitions of personhood are damaging. But it’s especially important because the easiest way to isolate and silence atypical people is by assuming that the natural, universal consequence of any person learning and developing is that they become normal/more relatable to you.

    When a parent talks about how they still hold out hope that their child will someday spontaneously have whole spoken conversations about social stuff/feelings with them, even though their doctors prognoses are like absurdly terrible, I am conflicted. Hope and optimism are not incompatible with prejudice and narrow-mindedness, and the combination of the two is especially complicated to discuss. I can want parents to experience the sense of engagement they seek with their child while simultaneously rejecting what those parents want their child to become. This is a kind of hope I cannot live without; that anyone, any parent, any child, is capable of building something with others…even if at first, it might seem impossible.

    I cannot learn to communicate with people who, when I try to engage with them, either act like I’ve done nothing or say that I am incomprehensible? Imagine what it’s like trying to learn a second language from people who believe their way of language-ing is the only way in existence, and therefore the natural end product of human development. Two people who speak different languages must presume the other is trying to communicate, despite their incomprehensibility, in order to work together and build a shared third language. That respect, and acknowledgement of valid difference, is a pre-requisite for building a language together. And building a shared language is always a necessary first step if one person hopes to become fluent in the language of another.

    This post (and your whole blog, honestly) = A damn great example of what building a shared language can look like.

    • This is wonderfully expressed, thank you so much! I agree with your point about what are we hoping for. While I know that I have let go of many narrowly focused hopes for my son, I would still love for him to not just be happy and fulfilled (although if he manages those two, really, why should I complain), but also to find an occupation that he enjoys, to be independent from us (his parents) financially and maybe live separate too. Its hard for me to see the other option, living with us through his adult years and possibly not being able to find work (as I have noticed that autistic adults are both unemployed and underemployed) as a happy outcome for him.

      But today, right now, I am full of hope and joy to just sit together and look at books, to understand what triggers his anxiety, to help him understand why I am telling him no or making him wait for something he wants, to (as you put it) speak his language back to him. And so grateful always for the words that are shared here, the help and the love that is given through those words.

    • Emma, this really made me STOP AND THINK. My son doesn’t have autism but he is non-verbal and struggles to communicate. I am going to link to Jess’ piece with your long comment. Your piece makes me want to let go of wishing my son could speak in my language and listen really intently to learn his language better. Thank you! Louise at BLOOM

  22. I get this so completely. I also very carefully read blogs of parents who had sons just a little farther along than mine. It seemed hard to believe that my Jack would be able to do those things. I watched my oldest (more NT) son do things—like, you know, handle a second grade class—and was sure that Jack would not be able to do the same. And just like you say, Jack didn’t do those things in the same way his brother or those other kids did, but he did them and he succeeded in his own way and I think that having faith that your child will find his or her way *in his or her way* is so crucial. You’re right and this message to parents is so damn important: BELIEVE.

  23. Your writing was so on point for me right now. It is so hard to believe that my baby boy will accomplish half as much as your daughter but she also gives me just a tiny speck of hope. I know that they are each different and will do things in there own way. It made me so sad when we went to the Christmas play. His twin sister stood up there and had a blast while he hide in the back with hands over his ears for about eight minutes then runs off stage. Although I was sad I will never let him know it, I celebrated in the fact that he stayed up there for most of the first song whether it was behind the preschool group with his ears covers or not he was still up on that stage trying! When I say your daughter not only in the middle of the group but singing her heart out….I was like yes baby boy might just one day make it to that stage! Thank you for all your postings! Although we have never met your posting on ABA and other areas reflected just how I feel.

  24. Pingback: Fits and Starts, and Someday, Nothing to Prove | candid calliope

  25. Pingback: Shine, little girl |

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