the question

**

It was seven o’clock on Saturday morning and Luau and I were still in bed. I don’t know why the words that had lived safely in my head for so very long needed a voice at that very moment, but there they were, suddenly at the gate, begging for release.

I waited, took a long, slow breath and then asked the question.

“Hon, do you think it’s realistic to think that Brooke will be able to live independently someday?”

Uncharacteristically, I let the question hang in the air. Typically I’d scramble to add more words – to fill the silence. I’d get defensive about having asked it in the first place and I’d try to explain that I didn’t mean to sell her short, I just thought that we should talk about it or at least, well, you know, start to think about it or …

I didn’t. I simply let it hang in the air between us. The only thing I finally added was, “I’m trying not to ask from an emotional place; I just want to know what you think.”

Luau finally answered. Quietly he said, “I think so.”  We inhabited the silence together until he said it again, though with no more conviction than he had before. “I think so.”

When I heard Michelle Garcia Winner speak some time ago, she talked about the mother of a ten year-old boy who was convinced that her son would be headed off to college some eight years later. Michelle told us that the boy had very limited communication and that it was ‘obvious’ that the mother’s thinking was desperately out of whack with reality. Michelle said that she had told the mother that she needed to adjust her expectations. I won’t get into how that story made me feel at the time nor talk about how it was only part of why I left the conference feeling agitated and upset; that’s for another day. But I will tell you that it has stuck with me.

Somewhere in the back of my head, I’ve always wondered what my expectations for Brooke ‘should’ be. Truthfully, I’m not even sure what they actually are.

My daughter is seven and a half years old. There is no way to know where she is headed, nor what she can do long term. The gains she has made from three to seven have been exponential. If she continues on a path of that kind of meteoric growth, anything is possible. If it tapers off, who knows.

But that has not stopped me from starting a college fund for her. Perhaps Michelle Garcia Winner would call me delusional for doing so, but I believe in my girl. I believe that with the right support, there’s nothing she can’t do. I believe that throughout her life, we will be able to find or create that support. I believe that prognostication is dangerous. And, with all due respect to Michelle Garcia Winner, whose work I greatly admire, I believe that limiting a mother’s expectation of her child is a load of crap.

I could never look at my girl and tell her with either words or actions that I don’t believe in her – that I don’t think that she could do ANYTHING she puts her mind to.

Two nights ago, *my girl talked to Santa*. She sat with him, smiled for a picture and asked him for a gift. Two years ago, that was so far out of reach as to be nearly unimaginable. But if there’s one thing my girl has shown me time and again, it’s that my imagination is desperately limited. Thankfully, hers is not.

So is there an answer to the question? No, not really. The answer remains, “I don’t know.” One of the eight top five hardest things about this parenting journey is the “I don’t know.” But I do know that I will never stop believing that it’s possible.

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46 thoughts on “the question

  1. I struggle with this daily, but haven’t dared to utter the words out loud – you put it into words so well! My 5 yr. old baby girl on the spectrum is the youngest of 5. The oldest is in college, the next in line is applying now, and the house is already starting to feel emptier – I can’t help but wonder if, years from now, I’ll be helping her to prepare (and preparing myself as well) to go off on her own. I can’t picture it from where we are now, but like you said, if her gains keep up at this pace maybe, just maybe…..

  2. For me, one piece has been the adjusting of what “independently” might mean. Heck, busy professionals hire housekeepers — does that mean they don’t live “independently”? There’s a huge range of different levels of both paid and unpaid support that could potentially go into living outside the home where she grew up.

    It rather hurts to say, but in our case we stopped contributing to Joy’s college fund and have started making those contributions instead to a savings-type account — because we don’t quite know the extent to which we’d take a tax hit if we end up not being able to use the 529 for higher education. That’s the personal reason we’re such big proponents of the ABLE Act (which I’m afraid is all but dead for this session of Congress) — we’d be able to have an ABLE Account for Joy and use it for college if that came to pass, or for other needful things if it did not.

    Hugs, and keep dreaming big!

  3. When I compare my son today and my son at the time of his diagnosis, I can’t believe he’s the same kid. And, in fact, he isn’t.

    I absolutely agree that there should be no limit on hope and expectations. The future is a moving target for kids on the spectrum. At the same time, I do have to remind myself not to be blinded by the joy over my son’s achievements — a huge success in one area does not guarantee success in another. To hope and believe, while honoring who he is and what he can do — it’s a tough balancing act sometimes.

    Katie has come so wonderfully far. Surrounded as she is with love and support, her future is bright.

  4. “Katie” I typed, uncaffeinated. Ugh! Of course I meant “Brooke.” (Isn’t it pathetic that I still haven’t retained the pseudonyms?) Anyway — bright futures for both!

  5. “I don’t know” is a lot more hopeful than “no”. I choose the path of hope.
    and if I think back on the last 10 years and how far we’ve all come, just think of what things could be like 10 years in the future.

  6. Jess, I think the biggest favor we can all do for our kids is to not put a time restraint on them. I think if we are trying to get them to catch up to some typical time line many of our kids will miss out on experiences they would be able to have just a few more years down that line.

    My goal is to help my children reach their full potential one step at a time and to help them obtain the skills and development they need for the highest quality of life possible. Right now I find it much easier to just look at 1 – 2 year goals. Thinking 15 years down the line makes me feel old :)

  7. I think this is a question we all ask ourselves many times and like you I don’t know either but that doesn’t stop me from believing in him. I take this life one day at a time and celebrate the gains he has made. The most important thing I want for him is to be truly happy in his life. I also have a daughter not on the spectrum and I don’t know what her future will bring either but I believe in her also! :D

  8. I wonder daily if he will have friends, a job he enjoys, live independently, will he have a girlfriend or boyfriend.

    It’s the not knowing sometimes that breaks me somedays but I will push him to be and have all of these things to some degree because I know he is capable of it.

    We’re all in the same rowboat, rowing furiously across the autism ocean.

    PS any posts that will make a girl cry must be headed with “Get box of tissues and come back.” mmmkay thanks!

  9. This has been weighing heavily on my mind lately, too. I have always kept things wide open, saying “Who knows how he will develop in the next 10 years?” But 8 is not 5 and I am seeing trends and tendencies that are starting to trouble me now.

    I recently wrote in my blog (The Squashed Bologna):
    “And then, this morning, I started to talk about Jacob and how he’s doing. And for some reason, this morning, something gathered momentum and came together in my brain that I had never let coalesce before, and I was crying and blurting out my fears for Jacob’s future.

    At this point, although things are far from certain, there is growing in me the gnawing fear that Jake will never be able to live completely independently, will always need some sort of care, a custodian to watch out for him for the rest of his life. And that just tears me apart.”

    Although I am far from losing hope, I am also starting to consider alternate possibilities. But I would never, ever, close the door on a bright future, I have heard too many tales of kids really transforming. Tough stuff, this.

    And my heartfelt happiness for you for all the huge strides Brooke has made lately. I hope she continues to astound you with her progress on a daily basis.

  10. I have figured two things out for sure in learning/living autism: I will always worry more than I want to and I can’t predict anything because both my kids will shock and surprise me.

    I hold on to hope because some days that’s all we’ve got.

    Oh, and I’m not saving for either kids college fund. We have a therapy fund because lord knows their gonna need it ;)

  11. My stepson is now 15 & we have had to adjust our “anything can happen” attitude to start to make plans & deal with his reality, as adulthood fast approaches.
    I think the “wait & see” (not my strong suit anyway, but God has taught me patience through it) & the “anything can happen” have gotten us this far & was necessary. I still have (maybe) unrealistic goals for him, because he does too. He talks about college (can’t happen) and getting a job (possibly..if we could find the right fit???) and we wonder every day how this boy could ever function on his own, even though he is WORLDS closer than he was 6 yers ago.
    HOPE is a mother’s RIGHT & responsibility if you ask me. That is what keeps us moving towards what’s best for them. You NEVER can know what the future brings..for ANY of our children even…but we dream..and some of the dreams come true….

    • Christi: BTW there ARE some specific SN college programs that are supportive and have appropriate academic instructional intensities and goals. My now 30 year old nephew (ASD & intellectual disabilities) took 4 years to get an Associates Degree at one, but he is so proud of it. Worth looking into if your son really wants this.

  12. My rose colored glasses shattered many years ago so this is coming from a place of brutal honesty, ok?
    I. Believe. ANYDAMNTHING. Is. Possible.
    From the bottom of my heart. Our kids are amazing. They have made huge progress! And with moms who fight like hell to get them the best services, love them unconditionally, and believe- wholeheartedly BELIEVE in them, I think just about anything is possible.
    The greatest thing about meeting other moms with kids who came before us is hearing about kids who were written off by so-called “professionals” who have truly become success stories. The ONE THING those kids had in common? Moms who never gave up. So, yes. I believe in Mr. K AND Brooke- because I believe in US.. And we won’t settle for anything less.

  13. “You hope
    And I’ll hurry
    You pray
    And I’ll plan
    We’ll do what’s necessary ’cause
    E-ven a miracle needs a hand!”

  14. We fight every day for our kids because we believe in them. If we didn’t fight, it would be a sign that we didn’t believe. Never, ever, ever give up. :)

  15. You are not alone; my boy is three and I still ask that question. The other night, as my husband and I spoke, I noted that my dream was for my son to work for Pixar. (I know, he’s three – it’s my dream, dangit!) I acknowledged that he might need us with him, but that we could all move to CA.

    I dream big. And I prepare for eventualities. And it’s all good.

  16. I know the biggest lesson i had to embrace since hearing those infamous dx words, is the lesson of living in the now. And i mean REALLY living in the now. Yeah, i hope he goes to college, learns to burn toast on his own, brings home the wrong kind of girl or guy, complains that no one understands him *and not in a communication sense*, writes a symphony, develops some sort of mathematical equation that goes completely over my head, etc etc. But that’s all YEARS from now (he’s just turning 4 next week) My concern right now is this week, this day, this moment. And it’s not as if i am not prepping for the 872 options that next week, next month or next year will bring. I just let them relax in the back of my mind while i work on what it is we’re tackling today. Ever since i started thinking like this, life has chilled out TREMENDOUSLY. I know it ain’t for everyone, but i highly recommend it.

  17. “Listen to the mustn’ts, child. Listen to the don’ts. Listen to the shouldn’ts, the impossibles, the won’ts. Listen to the never haves, then listen close to me… Anything can happen, child. Anything can be.” Shel Silverstein

    I live by this poem!!
    I am all done mourning the unknown. I can mourn some of the past because I know what it is. The future is for hope and dreams. (I am constantly repeating this in my head) ;0)

  18. “I don’t know” either but we have hope for our 5 year old. We have a college fund for him too. Just when I start having anxiety due to overwhelming thoughts about him he surprises me and shows me something new. His future is so bright and we are going to be holding his hand every step of the way! It’s comforting to know that we aren’t alone in this. Thanks, Jess!

  19. My boys are ten now. some days I think, they are going to be fine. Other days.. I shudder. But, I think I’m right. They will be okay. Probably not at 18, maybe in their mid to late 20′s. Definitely by their 30′s. Like everything else, I think they will they’ll learn, and continue to surprise me.

  20. My sitter constantly reminds me of her two brothers, both autistic. One is on an exchange program in Japan through his university. He’s living independently and doing really well, even though, she says, he still hates talking on the phone. The other thrives through high school. “They’re both a little weird, don’t get me wrong, and they’ve both had study skills classes,” she says. “But they’re doing it, and even making decent grades.” She gives me hope, regularly, for my Pip.

  21. Nobody knows what the future holds. I’m going to remain optimistic and continue to fight for and support my daughters in whatever choices they make for their futures.

  22. I taught for twelve years, and I was constantly surprised by stories of what my former students were accomplishing, what paths they’d chosen to take as they grew into maturity. Our guys are still so little at seven that it’s impossible to know where they’ll be in adulthood, and imperative to strive for their most independent outcome, no matter what that is. Brooke is in good hands. Another eloquent post Jess!

  23. Yes, I think about this all the time and my girl’s just 4 and a half. When she was first diagnosed, I was totally convinced that she would be “ok” and would grow to function in society. But the painstakingly-slow progress has taken a toll on my confidence. I want to believe anything and everything is possible. But I also want to have somewhat realistic expectations. It’s a tough combination, and I rarely get the mix of the two just right.

  24. Also? Came back to read more inspiring comments. Wow.

    Realized I want to add a link to my dear friend Peter Flom. He’s my age/my generation (early 50′s) and is himself on the spectrum w/ NVLD.

    His amazing mother founded a SpEd school for him because at the time there was NOTHING appropriate, no school willing to educate him to the fulfillment of his possible potential. And she believed in him, even though the “experts” said he would never learn, never read, she should just give up on him. She did none of those things.

    Did I mention he is the married father of 2 kids (his son is my son Ethan’s best friend)? And has a Ph.D. in statistics. Here is his blog: http://www.iamlearningdisabled.com/

    • Varda can I tell you how much you rock:) I don’t generally come back to read comments, today I did, and WOW a gift for me….YOU. MADE. MY. DAY. Ganks (Aidan’s way of saying thanks) xo.

  25. We have had this conversation more than a dozen times since Rachel was born and we were told so many disheartening things about what she wasn’t going to be able to do… and it always came down to our firm belief that a child isn’t instinctively going to raise the bar themselves… as parents, that is our job. Shoot for the moon… always… let them soar as high as they may… and should our children grow up less ‘independent’ than others, well, I can’t say I would mind having one of the greatest gifts in my life hang around a little more even when she’s all grown up ;0)

  26. All mothers must hold tight to their unending love, hope and expectations for their children. And I personally thank you for this blog which has so enlighten me to the struggles of family life when a child is on the spectrum. God Bless you all.

  27. we’ve only had our diagnosis for a year, and I’m constantly surprised at what my girl can learn to do.
    A work acquaintence with an severly autistic son told me once about “not forgetting” that I lived in Holland now, so don’t expect Italy, referring to the “Welcome to Holland” piece. That never sat right with me, and still doesn’t.
    Don’t get my hopes up?
    Don’t expect anything?
    PLEASE!! Not this family!

  28. yes.

    i like Rob Rummel-Hudson’s concept of “over-believing”. he wrote, “I’ve learned to trust my instincts… because even when I’m wrong about what she can do, I like to believe that I mostly err on the side of overbelieving in her. I’ve learned that everyone needs people who love them enough to overbelieve in them… she has a funny way of ultimately meeting those expectations, albeit in her own time and in her own way.”

  29. I don’t think ‘living independently’ should be the thing you most want for your children. Happiness is way more important!

    I was reminded of a group of people who live together in a student house in Brighton. They go to parties, out to karaoke, attend college or work, go away on holiday together, have girlfriends, play around on Facebook… and all these people have learning disabilities. http://www.the-specials.com/home

    Just, take what you get. Please don’t mourn for what might have been.

  30. Moms (and dads) have to be tenacious and be their child’s advocate, not only for what they need for now, but what they need for their future, and that is what you do so well for your children and what I am trying to do for my sons as well.
    We can never give up hoping that things will change for our children, that somehow, things will be different and that the outcome will be what we originally had hoped for…but we have to also be willing to adapt and change accordingly as time passes. We have to keep the dream alive while at the same time, we have to live the reality of what has been dealt to us…
    Our younger son cannot play any contact sports due to his medical condition. We have had to change plans for activities related to him, as his little body cannot handle a major bleed.
    We have had to change our expectations for him, in that playing hockey and baseball are still dreams but are not reality for my son with Von Willebrand’s.
    My hubby was really hoping to teach both of his sons to play both ice hockey and baseball, as those were his favorite childhood pastimes. Dear Hubby had visions of being the coach, taking them to either play ball or play hockey, and that just cannot be for our younger son. Dear Hubby originally decided that he would still go ahead and teach our older one all about baseball and hockey, and signed up to be assistant coach for our older one’s t-ball team, but when he saw that it was devastating for Little Bro to not get to play, he had to rethink this and so we decided as a family to forgo baseball and hockey for now and the boys are instead enjoying swimming and golf. Things might change. Maybe through genetic research, they will come up with a way to alter the body’s ability to produce clotting factor. If that happens, then Little Bro might just be able to play contact sports and do other boyish rough housing that he would just love to do right now, but can’t.
    It also ways heavily on me, as we have to wade through whether or not a particular treatment is worth the risks, whether trying to avoid a major bleed by testing to see which blood product would work best in such a case also means exposing him to potentially serious consequences…but that is our reality and we will have to make a choice for him.

    You impress me as keeping your eyes on the prize and focusing on both the here and now but not losing hope for the future. Hopefully, with continuing research into autism and life on the spectrum, something will change that will make more things possible…plus, Brooke sounds like she has just made so many major leaps forward…
    My dad always would say to us when faced with a challenge as we were growing up to ” Go with God, as with God, anything is possible”…so I say stay the course and keep the dream alive that maybe things will work for her for the future to live independently…or else, maybe in the meantime, with so many more children being diagnosed as on the spectrum, maybe there will be a “new normal” for what independent living could mean for these children as they enter adulthood…it has yet to be seen…
    As always, your posts inspire me and get me to think about things. Even though our challenges are different, I feel a kindred spirit, in that we both have had to face some major challenges with respect to our children.
    Have a great day.
    Colleen:)

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