On Eating and Life: I Know You Understand

I’ve been a little radio silent around here for a bit. Mostly because I’ve been eating. Or thinking about eating. Or planning the eating.

To be fair, this is the case for me All the Time. I like food. But in my defense at this particular time, my friend Maggie and I just held our first ever Food and Wine Retreat, so All the Thinking About Food = LEGIT.

I cannot adequately express how very much I needed the time away at the Oregon Coast to just hang out and relax.

It’s been a month, friends. One of those sort of Stunning, Beautiful, Brutal MONTHS. Anyone else?

And these pictures from the retreat have nothing to do with the Month I’m about to share, but, perhaps against the backdrop of the Real Life we’ve been living, you can see how grateful I am for Rest and Good Humans and Amazing Food by the Sea.

A friend approached Greg at church a few Sundays ago. She’s kind, and she knows our family, so she thought we’d want to know about the post in a public group on Facebook, describing a teenager on the path near our house who was threatening a young family, aimed at hurting or robbing them. A teenage boy who, when physically described, sounded too much like our oldest boy to ignore. 

Since the post mentioned his service dog, too, we had no doubt, really. I also knew he wasn’t going to hurt or rob anyone. Ian is very much like his Golden Retriever, Zoey; he’s much more likely to lick you to death than do anything to hurt you, ever.

But his disabilities — intellectual, verbal, and developmental — none of which are visible, mean he’s regularly misunderstood. And, if I can be perfectly frank here, our Guatemalan son is no longer seen as an adorable little boy with big brown doe eyes; now that he’s a 5’10”, 190 lb, brown male, people see a threat. I cannot adequately describe how much, over the last 15 years, our eyes have been opened to systematic and entrenched racism and to our own enormous privilege as white people.

So I did what any mommy would do. I joined the Facebook group, read the message about the lurking boy who followed the family, read the comments encouraging police involvement and warning the public to be wary of him, and attempted to defend my kid and dispel the idea that he’s a danger.

I wrote: “Hi. The boy you mentioned is my son, Ian. Ian is significantly intellectually disabled, and the dog, Zoey, is his service dog. As you noticed, Ian’s disability affects him socially, as well, and he is unable to accurately identify how others feel. His speech is also significantly impacted (he’s unable to understand others well or make himself clearly understood) — not sure whether you talked to him or not, but thought I should let you know that, too. I’m so sorry his behavior caused fear and anxiety for you and your kids. The good news is he wasn’t going to rob or hurt you; he cares deeply for others and isn’t violent or dangerous in any way — he’s just awful at understanding social cues. Ian’s only unsupervised activity each day is walking Zoey for 15 minutes on that path. He’s 18 now, so, alongside his therapists and teachers, we’re trying to give him “more responsibility” to do a few things on his own. Taking Zoey for a walk is his one thing right now. We regularly talk to him about the fact that people respond differently to him now that he’s “man sized” than when he was small. He’s very interested in and likes people, so it’s difficult for him to understand that lurking beside people, their kids, their conversations, etc. makes people feel nervous. Please know this is something we’re continuously working on with him and also that we had a long discussion with him about your experience. He said he “didn’t mean make them feel bad.” We’ve emphasized the importance of giving strangers a lot of space so we don’t appear threatening. Wishing you peaceful walks in the future…” 

I hit send, and then I cried for a really long time. 

There’s a grief inherent in raising children who experience disability. I haven’t met a parent yet who hasn’t felt it. But I’ll tell you… the last two years have been extraordinarily hard. Defeating. Exhausting. Relentless. 

We adopted Ian when he was 3, and, until he was 16 or so, we dealt in possibilities. He could possibly drive some day, we thought. Or maybe one day he’ll have his own apartment. While kids his age were earning trophies for their sports teams, we were happy for them… and grieved that Ian will never experience the camaraderie of going to State with water polo or wearing a letterman’s jacket on campus. But still, we thought; he still has potential for Some of the Usual Things. 

Until we didn’t think that anymore.

Until his childhood was over.

Until we arrived at the barriers he cannot climb. 

And then we grieved again, both for the life he cannot have… which we long suspected… but perhaps even more for the end of the possibilities.

 

Now, please don’t misunderstand me. Ian has a LOT of potential and will learn and change and grow as the years move by. But the goals are different now. The capacity isn’t there to drive and it would be both foolish and dangerous to try. Now the goal is learning public transportation. Similar with independence; he won’t get to go away to college like his sister or live in an apartment unsupervised or handle his own finances. And so we look to what he CAN do… but we grieve, too. There’s a lot of that.

And the grief over the “threatening teenager” was founded in the reality that he will face this sort of thing forever. That he can’t live only inside our family bubble. That he’ll go out into the world for more than 15 minutes at a time, and more people will feel threatened by a man-child who really would love to have a friend. That 15 minutes is all the time it takes for that to happen. 

I mourn that he can’t go into the world like I can and disarm people with words. I mourn that he’s 18 and must still be supervised 23 hrs and 45 minutes a day. I grieve that he will be judged “creepy” or frightening or a danger to women and children. 

It’s impossibly hard to love a child and not be able to give him the world. You know? Impossibly hard.

The community response to my message was beautiful, really. Strangers sending love, letting us know they’re eager to meet and greet Ian on his walks, and telling us about petting Zoey and chatting with Ian. “I’ve met this young man and his beautiful dog, as I walk the trail very often. I also have taken the time to stop and talk to him and Zoey (who he was kind enough to let me pet) I never felt a threat or worry around him, to me he just seemed a little lonely and a friendly hello seemed to really brighten his day. I hope they continue to enjoy the trail.”

I cry again, every time I read that. I needed the reminder that some people are magic and have the power to see past the surface to the precious person within.  

But the whole experience threw me for a loop, especially coming, as it did, on the same day my oldest girl asked us to find her birth mom. I’m a fan of that plan. I’m really excited for her… and also for me, truth be told. I’ve wanted to hug her bio mom for years. To thank her for giving my girl life. To tell her Abby’s been happy and healthy and well loved. To share how proud I am of our girl, hers and Greg’s and mine. But dealing with the emotional aftermath of the Path Situation AND trying to figure out how to hire a private investigator in Vietnam? That was something, friends. Just a teeny, tiny bit overwhelming. 

So it’s been a little radio silent around here. And I think I’ve made the case for Why Food, and Why Retreat, and Why Rest and Respite.

Because life is lifey. Yes?

Yes.

Life is lifey.

But life can also — at least for a little while — be fixed with fresh pasta and pizza and risotto and local wine…

…with outstanding people and human connection…

…with goofballs and laughter and a frickin’ break from the grind…

…and with the reminder that we’re all in this together.

None of us alone if we’re brave enough to reach for each other.

Signing off for now (and headed to get myself some food, because obviously),

 

 

 

P.S. Retreat season is a busy time for me. Lots of thought, planning and energy go into these events, none of which would be possible without my steady staff,  Maggie and Polly Peterson, who have made my dream of rest and respite built on human connection happen. The retreats are how I’ve met and spent time with many of you, dear readers and friends, and I’m grateful for every minute. (Including the naked on the beach ones.)

P.P.S. We do have two more retreats coming in 2018 — the Magic in the Mess Writing Retreat in May (for new and experienced writers alike) and the Mindfulness Retreat in November. There are still some spaces available at each, and I’d love for you to come. Maggie will be cooking. 😉 You can find all the details here

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ABOUT BETH WOOLSEY I'm a writer. And a mess. And mouthy, brave, and strong. I believe we all belong to each other. I believe in the long way 'round. And I believe, always, in grace in the grime and wonder in the wild of a life lived off course from what was, once, a perfectly good plan.
24 comments
  1. […] and heart-wringing stuff about parenting a kid with disability.  Beth Woolsey writes about her son here, and Carrie Cariello blogs every Monday about her journey parenting her son who is on the spectrum […]

  2. […] you’ll be glad you did… and you can always give it to a friend if you win.) I wrote a post not long ago about my own sense of vulnerability at the retreats we offer at the Oregon Coast, and Melanie picks up the theme for us […]

  3. PS: That last photograph — the one with the Argyle wine & glasses — has amazing lighting and is an all-around fabulous picture.
    And please give Ian a hug and Zoey a pat from me.

  4. Two of my four sons have limitations I wish I could take away for them: one is on the autism spectrum and the other suffers from post concussion syndrome (nearly 2 years now and no respite in sight, so I’m coming to terms with the possibility that he may never recover). We love our children deeply and want the best for them. The problem is when “the best” we had in mind isn’t the reality of what the best really means in their specific cases.
    I’m thankful that your reaching out was accepted instead of rejected by the group. I’m thankful that Abby’s bio-mom will soon know the truth and see those photos (other post). I’m thankful we have food and friends and wine and Jesus, because I can’t see doing life without them.
    Bless you, Beth. May I someday be one of those lucky ladies on retreat with you.

  5. First and foremost: sending you all of the love. I know some of your struggles as I have a four year old beautiful, brown, boisterous girl for whom I still have lots of hopes. And I dread the day doors start to close. Second, I am determined to make it to one of the retreats. Someday.

  6. A year ago, I sat in a meeting with my daughter’s teacher, principal, school therapist, psychologist and a resource support person (whatever that is) and listened to them discuss my daughter’s academic and behavioral progress in school (2nd grade at the time). I had to answer questions about my pregnancy, my daughter as a toddler, and significant life events i.e. my divorce. I listened to these adults who cared, but didn’t love my child. I sat there stoically as they described my daughter with “severe anxiety and emotional disturbance.”
    For an hour, we strategized how to best support her, and created behavior charts and academic goals for her, and I left with a folder an inch thick with All of the Information about how to parent such a child.
    Once I got to my car, I was shaking and sat in the parking lot for an hour sobbing.
    The meeting was an answer to a lot of the questions I had been asking about her, but it confirmed things I already thought/knew but wasn’t ready to accept and grieve over.

    Now, a year later, my “extremely anxious, emotionally disturbed” child is THRIVING. She is in a regular classroom (at a new school even), with solid friendships and performing above grade level in math and reading. At the end of the last school year, she desperately wanted to be in the school talent show, and after being rejected from two already formed groups, decided she would be a solo act and did what she does best – told a dozen jokes with props and everything.

    She still struggles in a few areas, but I remember being in a place of absolute hopelessness and your post had me in tears. Sending all the love your way, and please give Ian and Zoey a big hug from me.

  7. Oh, Beth.

    I too have a son who is a young adult, and is disabled. He’s never going to drive, or be able to live completely on his own, and spends most of his time in his room, alone, on his computer. He went to visit someone he knew from school last week, and I almost cried because he was doing something social.

    Waving in the dark, over here, and sending you and Ian so much love.

  8. I wish I had words, but I don’t, so thank you for sharing this and for being honest. Waving at you in the dark. I’ve had a month, too, not like yours but full of ups and downs and emotions and all sorts of things, and it’s helpful to remember I’m not alone and that things are often far more complicated than they seem. This is not at all the same but I just need to share that yesterday a stranger told me my son’s severe food allergies were my fault for not exposing him to the allergens when he was a child. Because obviously that would have saved him from life-threatening allergies, which run in my family and to which he’s therefore genetically predisposed (so the exposure she recommended may have actually killed him–but what do I know). The allergies already dictate so much of our life, because every.single.meal.and.snack have to be considered, thought out, and planned wisely–but obviously, if I’d only been smart and loved my kid, I could have avoided it all. I must be a bad mom, because clearly I want my son to miss out on life and to always have to be the odd man out among his friends and in every social situation forever. Seriously?! She doesn’t even know me. I just smiled and said have a good day and walked out, but I wanted to scream and yell and weep. Why can’t we weep with each other instead of jumping to judgment? I’m that much more thankful that you are honest, that you weep, that you let us weep with you in this difficult journey of parenthood. I know you are doing all you can, and I know you love your kids and that you want what’s best for them and that this involves tears and pain and struggle. You are rocking it. Don’t let anyone tell you otherwise. Your love for your kids shines clearly and brightly–and love always protects, always hopes, always trusts, always perseveres.

  9. You are a ninja parenting rock star.

  10. Ugh, tears for you and Ian. Is is hard, this parenting gig. We have one on the spectrum – she’s a girl and will never be seen as a threat, but I literally cannot sleep some nights worrying about how to keep her honest, guileless, innocent self safe from boys/men who see an easy mark. Especially after we’re long gone. We have a trauma/attachment kid who is so determined to be as unloved as he feels unlovable. He’s a work in progress every day. And our baby is still a mystery; he may need a lot of support when he’s grown, or he may be the only neurotypical sibling…how will that look when we’re gone? It’s hard. It steals sleep every night. Your Ian would fit right in with our quirky crew – I wish we lived near the path, we’d so love to run into him (and our youngest is literally part dog; he loves dogs more than I love chocolate, so Zoey would be a hit). The birthmom thing is hard too…finding her across the world will be a challenge, but so worth it; I love our kids’ birthmoms more than they will ever know. They are family and feeling that gratitude for our shared kids is something that never leaves. Hugs to you and your family. I hope Ian’s bravery in heading out in the world is met with kindness; he deserves nothing less.

  11. Oh, Beth. I’m so sorry about the Path Thing. The social behavior thing is so hard, even for people who fall into the neurotypical category, and some people just don’t understand what a huge challenge it can be for people whose brains struggle to make words-coming-out-good-thing.

    I’m glad the FB group responded to your post with empathy, and I hope that you have given them the gift of deeper understanding of others.

    It’s not easy being a parent. It’s not easy to love somebody the way we love our kids– our flawed, frustrating, stubborn, amazing, gifted, beautiful children– and there’s always this sense of wanting to make them understood by others while not letting anyone else hurt them in any way EVER. It’s really difficult, honestly. And it should be! That’s how we can know to slow down and do it carefully, even in the midst of a busy, hectic life.

    Sending you all the love in the world, and hoping that finding Abby’s birth mom is as easy as possible and gives each of you the opportunity you seek.

  12. One month ago my 10 year old son was in the hospital dying of diabetic ketoacidosis. Today I am so grateful he is alive that I can’t really stand it, and somehow simultaneously pissed and grieving because care free days of ice cream for dinner on the hottest day of summer can never happen again and how are we supposed to handle vacation? So it’s been a month, to say the least. I quit my job among other things.

    Wish I could meet your son. I’m sure he’d seem normal to me as most people strike me as bizarre to say the least. I never fit in with anyone generally considered “normal”.

    Love you

  13. Sending all the hugs! My heart hurts for you and your beautiful family. This post helped give me some perspective on my own frustrations with the women who come to our church for the first time and then feel the need to give me advice on getting my son to sit still during church. Last Sunday it was a woman who recommend a child psychiatrist. I was so upset I couldn’t eat lunch afterwards. These are always people who have never been to our church before, who don’t know us, don’t know my son, don’t even know how old he is (he’s like 90th percentile, big for his age), don’t know what his birth mom exposed him to in utero, and don’t know all of the things we’ve tried with him, don’t know how much he’s learned and grown. And that’s coming from people who are genuinely well-meaning and don’t think my son is going to hurt them or do any worse than slightly distract them during church. I can’t even imagine what you’ve been going through. So glad that you were able to get away to rest and eat and be with others who support you. Sending love and prayers.

  14. My heart is breaking!!! There is so much more to each of us than what is seen. I hurt for Ian and you and so many more, who are misunderstood. Your story is so poignant and painful and profound. If we try to understand each heart and listen carefully and trust there is value and beauty to be discovered when we dig deeper, the world would become a kinder place. Sending Love and Hugs your way!!!

  15. The reality of this life with a son who others are afraid maybe threatening I too also share. My son was adopted as a premie addicted to herion who was 3lbs and now 18 years old and 160lbs. With autism and other challenges many can’t SEE they just see his quiet “angry” look and his dark skin. You are so right that the cute little kid who many accepted is so different now as a man-boy. That look is really fear and anxiety and struggle to find ways to connect while feeling a huge desire for connections that would lead to any positive relationships. Your truth of this season of acceptance of what milestones won’t be reached is hard for any who don’t live it to understand the pain involved. At 18 to have to plan for guardianship instead of packing for college was hard. Thank you for sharing this season of your life. It helps to see someone be able to be open and honest. You reminded me to keep celebrating the positive.

  16. Dear Beth and Greg, I’m crying too. We love you guys all so much it hurts. <3

  17. One of those times I just wanna reach out and give you a great big hug ! Hang in there

  18. one of those times I want nothing more then to reach out and give you a great big hug ….

  19. Remember a hundred years ago when I said, “You really need a like button here…” and then you got one? Well, now you really need a “LOVE” button here, and a “HERE’S A HUG” button, and an “OH MY HEART JUST BROKE” button… Just sayin…

  20. So much love to you and yours.

  21. Hi, Beth — Longtime reader, possibly first-time commenter (can’t remember if I ever have in the past). Wanted to say how much I was touched by this post, and the one before.

    As an easy and free start to trying to find your daughter’s birth mother, you might try posting on Facebook and asking people to share. Social media is so wide-spread, you never know who among your circle of acquaintances may know people in Vietnam, who know others, and so on.

  22. You handled that spectacularly! There were so many ways the situation could have gotten worse: you could have been defensive or lashed out angrily, ignored the problem, etc but instead it sounds like everyone learned something and his walks will be better and more friendly now. It takes a thoughtful person to hear something painful and deal with it in a way that actually helps both parties.

  23. Sending love. I can only imagine how that must feel. I dreamed last night of losing a child I had just adopted, but had already saved from drowning (the child didn’t die, I was whisked away, and then that dream ended and I learned that it was the first in a series, but the second didn’t happen, and I found and lost a dream kitten instead. And I didn’t even have an alcoholic beverage last night). So, I did wake up with feelings of loss this morning, and now read about your reality. Sending more love!

  24. Sending hope — from far away– but hope 🙂

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