we promise

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This is hard to write. It would be easy were this an actual diary, the kind under lock and key for no one’s eyes but my own, and then perhaps, someday, my children’s, long after I’m gone and they find it packed away in a dusty attic. But alas, this is not that kind of diary. This is Diary. Something that has taken on a life of its own. Something in which, when I write, there’s no taking it back, deciding I didn’t mean to share it, re-sacreding it. Yeah, I made that up. The absurdity of the word itself serves to illustrate the absurdity of the idea. Once shared publicly, what was private – sacred – is no longer so and can never be again.

But I have to say this. Because I know that there are parents out there who walk this path behind me and if I don’t say this out loud, if I don’t share the pain of this particular misstep, others will do what I did. If there is a possibility that I can change it for one kid then I have to write this.

But I will not betray my child’s privacy again to do it. Once was bad enough. I can’t do it twice. So forgive me a bit of circumspection, won’t you? It’s the only defense I’ve got left.

I recently read a post called Those Pesky Life Skills That Everyone Keeps Talking About by Cara Liebowitz – a.k.a Spaz Girl on a relatively new site (that’s well worth your time) called We Are Like Your Child. In the post, Cara talked about the necessity of teaching children with disabilities basic life skills and the dangerous misperception that intelligence somehow negates the need for help in this area. Her points are well taken, and it’s clear that these are topics that need to be better addressed for far, far too many people.

In Cara’s post, she asserts that the responsibility for teaching life skills to children with disabilities lies with their schools. She expresses deep gratitude to her mom for picking up where she believes her school let her down.

For me, the responsibility to teach life skills to our children, regardless of disability, unique neurology or physiology or just plain old individual matrix of skills and challenges, is ours. While I don’t disagree that one way or the other, we, as a society, need to ensure that our children – ALL of our children, are taught the skills they need to independently manage every-day life to whatever degree they are able, within our family, I believe the job to be mine and my husband’s. But none of that is really the point of THIS post. Or perhaps it’s the entire point.

As I read Cara’s post, I was transported back to the early part of this school year. We knew we needed help at home. It started with trying and failing to help Brooke overcome her paralyzing fear of the smoke alarm in the kitchen. We couldn’t get our own daughter to be comfortable walking from one end of her own home to the other, no less sitting down at the table to eat. It was heartbreaking on so many levels, but none more than seeing our child hurting and not having the tools to make it better. So we asked – pleaded, really – for help.

And then, once there, inside our house, they asked what else we needed. And I didn’t want to say it out loud.

I didn’t want to admit that I couldn’t teach my own daughter to brush her own teeth well enough to hand over the brush. But that one I could say. It was a lot harder to say that I didn’t know how to teach her to shower herself.

They did.

They matter-of-factly broke it all down into manageable bites. A process, a chart, step-by-step visual prompts. The tools that we didn’t have thanks to a lack of emotion and objectivity we could never have.

They came into our home and taught our daughter to shower. I was grateful. And shattered.

Last week, I wrote about a discussion I’d had with a number of Autistic advocates about privacy and how it affects what people are willing to share online about their own (and their children’s) experiences. And I sat with it. And chewed on it. And internalized it. And woke up in the middle of the night wrestling with it.

On Tuesday, as I proofread Brooke’s IEP one last time before sending it on its way, my breath caught in my throat and I choked on a sob as my finger ran across the Home Services grid. I told Luau, with a sense of urgency that was long since passed its expiry, “We %$&!ed this up.”

And I spit out the months-overdue words about how the sacred has to stay sacred and the personal has to stay personal and I asked – I pleaded with him, For the love of God, Luau, isn’t Brooke’s life an open enough book as it is? Do we really need strangers in our home witnessing her most intimate moments? We owe her more than that, damn it, and yes, I know we asked her first, but really? Reeeally? What does that even mean, ‘We asked her’? We are her parents. Asking her the question implies its validity.

And then there were the details that I will not share here and Luau reminding me that everything was “very respectful” and “at a distance” and me countering that there is no respect or distance once you’ve already let them into the sanctuary of your own home. How can there be distance for heaven’s sake?

And as the words tumbled out over the tears, the solution was as clear as day and I didn’t know how I hadn’t seen it before and I was angry at both of us for looking at the clouds and missing the sky because – how? How did we miss this?

So I said to Luau, “Listen, we needed help, and that’s okay. We don’t have all the tools and we will never have all the answers. There can’t be shame in seeking help.”

I couldn’t get the words out fast enough.

“But we didn’t need someone to come and teach HER, we needed them to teach US to teach her.”

That was it. That was the answer. That was what I needed to say, to do.

“And that’s how it has to be going forward, okay? Promise me, babe. That’s how it will be going forward.”

He promised.

In so many cases and in so many ways, our children grow up with their lives on display. Parents in this world in which we live – the world of Early Intervention and Home Services and specialists and doctors and therapists whom we beg, borrow and steal to get to come and help us navigate a world that we do not have the tools to navigate alone, constantly lament the constant flow of people through their homes. They see their dirty floors, they say, the piles of laundry, the unpaid bills. There’s nowhere to hide – even in our most raw and intimate moments.

But so too, they see our children and our children see them. This is the world they know – one in which their every move is analyzed, scrutinized, extinguished, replaced, redirected, reframed, reinforced.

For God’s sake, what is left that’s private?

There are times when there is no other choice. Times in which it’s impossible to manage even intimate care without help.

But from here on out, whenever possible, WE will ask to be taught to teach our girl.

We promise.

35 thoughts on “we promise

  1. This is another lesson learned. You haven’t failed. You learned from, yet, another experience. That’s never a failure.

    Love you,
    Mom

  2. Thanking you through tears this morning. THIS: “But we didn’t need someone to come and teach HER, we needed them to teach US to teach her.” This is the nut, the gift. Yes. A thousand times yes. Dignity and some remainder of privacy. Amen.

  3. Oh YES! Thank you for writing this! I agree with you wholeheartedly. To save money on gas & trips to Behavioral therapist, Rehab therapist, OT, PT & ST, I allowed home healthcare to come in. I thought it would be a GREAT idea. I mean, they would see behaviors that didn’t occur in a clinical setting. Only, the contrary happened, he began displaying institutionalized behaviors in the home. Suddenly, his therapy sessions were not effective. Instead of the therapists helping him, he began to bond with them on a level that undermined their effectiveness with him. He could see the therapists building a friendship with me & it eroded his feelings that they were there for HIS best interest. And, honestly, toward the end, these amazing professionals began siding with me more than working with him. These two need to be separate. Home needs to be sacred! Well done Diary!

  4. Reblogged this on Flying Solo On Eagles Wings and commented:
    Oh YES! I agree with her wholeheartedly. To save money on gas & trips to behavioral, rehab, occupational, speech, & physical therapies, I allowed home healthcare to come into our home. I thought it would be a GREAT idea. I mean, they would see behaviors that didn’t occur in a clinical setting. Only, the contrary happened, he began displaying institutionalized behaviors in the home. Suddenly, his therapy sessions were not effective. Instead of the therapists helping him, he began to bond with them on a level that undermined their effectiveness with him. He could see the therapists building a friendship with me & it eroded his feelings that they were there for HIS best interest. And, honestly, toward the end, these amazing professionals began siding with me more than working with him. These two need to be separate. Home needs to be sacred! Well done Diary!

  5. This is a beautiful promise and a wonderful roadmap to follow. I really hope you will be gentle with yourselves if there are some things you need to call in help for for the very reason you gave “…The tools that we didn’t have thanks to a lack of emotion and objectivity we could never have.” You guys are sensational parents and advocates, you do so much. Some things are hard to teach our children with special needs ourselves because for us the stakes sometimes just feel SO high , we care so much and one thing can feel so heavily weighted because of what it brings up for us in our vision of the rest of our beloved child’s life..

    • This opened my eyes – great post. I also agree with Round and Round… go easy on yourself Jess. I got help with tooth brushing and toileting training. The methods and processes were something I couldnt create myself. Moreover, some ABA and other therapists have an “instructional control” with my kiddos that is pure magic, but something I will never, and dont really feel appropriate, to achieve.

      Have you heard of RDI? I think the basic premiss of that method is to train the parents… I havent done it myself, but it’s big here in Western Canada.

      Good luck!

  6. Thank you so much for this! I think we all struggle with this, but i think your post is RIGHT ON. We are struggling with toileting and pica issues, and it is heartbreaking to me that currently we cannot give our son more privacy. This follows him to school and his day camp also, where it is impossible for us to be with. But right now privacy is not safe for him, and i have to say that the staff working with him are doing their best to respect and protect him… and help with addressing the problem behavior so he can have his privacy back as soon as possible. We all need time and space that solely belongs to us. Trying to teach my son the concept of privacy for himself and others. It is never easy. Dont be too hard on yourself. We can only do our best with the knowledge and resources available to us at the time. thank you again for sharing!

  7. Once again you hit the nail right on the head. For those of us who can’t get home services, would you be willing to share the step by step break down for how to teach our kids teeth brushing and showering?

    • i will see if i can find the visual schedules. give me a little time – the to-do list is loooooooooooong.

      • Me too ,, I need the steps too,, see you did it again. We need this help and understanding that you so freely offer up on a daily basis. Thank you!

      • Understand completely, thanks for looking. Why is it our to-do lists keep getting longer, but no matter how much we get done, then don’t ever get shorter.

    • Karen, I’d like to share what worked for us if that’s ok?
      Our therapist told us about “reverse or backward chaining”. It’s where you do all the steps of the task except the last one, have the child do that. When they’re able to do that step without prompting then have them do the last two steps. Then the last three and so on. The theory is that by the time they do the first few steps they’ve had time to memorize those.
      I just did a search and found a link that may help explain this better …http://special-ism.com/last-is-first-in-backward-chaining/.
      This particular method worked great for us. It still comes down to trying everything and this is just one way. Hope this helps 🙂

  8. So funny – I usually think of you as being miles ahead of me in your thinking, but this is one I “got” early on. I’m still very close to several of the people who worked with us in EI; they were so excited to have a family where th request was not just to help our son, but to teach us how to help him. Most parents just don’t get that they can ask for that, and it’s a perception that really needs to change.

  9. I couldn’t agree more….All of what you wrote is right on point and needs to be said again and again.
    You never cease to amaze.
    Dad

  10. I’ve felt everything you’ve described. May I suggest a book that I’ve found helpful? Taking Care Of Myself by Mary Wrobel. My daughter’s SLP uses it at school in her Life Skills as well.

  11. Thank you for this, because while we’re on the opposite end of this particular therapeutic spectrum (where every request for help with home skills has met with “we can only officially work on things that affect academic performance” and thus I worry most about what Cara said), I can see that that might change in the near future as he reaches teenage- and soon after adulthood, and I could DEFINITELY see us falling into this particular trap, of handing him over rather than asking for help for US. So, again, thank you. (But, yes, do not beat yourself up. This is about learning. If I wrote this post, you’d applaud me for getting it right, for having the epiphany, and tell me to focus on that, and not on how we got here. Right? Right.)

  12. Jess – Thank you does not begin to say what I want to tell you. Your willingness to share the good, the bad and the ugly teaches me something every day. You make me a better therapist, advocate, and yes, a better person. How I wish I’d had someone like you when I started out 30+ years ago!

  13. this is spot on. you have perfectly articulated the helplessness , guilt, and the flood of emotions that accompanied the hard to accept fact that I needed help in the supposedly intrinsic act of raising my child. Thank you for sharing your insights.

  14. For these reasons, privacy and respect, we chose to homeschool. Not because we couldn’t get services or support (we were taken to due process by our district and easily prevailed….and I am a parent advocate for many families) but because we realized that we wanted to maintain our son’s life self esteem…..our home, like many others, has had a revolving front door of therapists, behaviorists, social workers, etc …..no part is sacred. Everyone and everything has been talked about, examined, and put into a goal-oriented context….. So when our boy started to shut down in the second grade, after five IEPs in four months (and he had very well qualified support and an enviable ABA based team of caring, knowledgeable people), we chucked it ALL. Left. Hasta la vista baby. For the last 19 months, we have unschooled and done no therapies. We eliminated all the “fixing” and just lived life. I have spent much time reading….you Jess, Landon, Karla, just about any thing from an adult autistic….. Yes, our son is still autistic!! But our life’s approach has changed tremendously, which was good for all of us, including our three adult kids. I have never preached to any one that they should live as we do, as we all have our own path to travel…..but due to the nature of ableism, it is important for me to live the life that I believe will best help our son to grow and thrive and learn to know and recognize his own strengths, abilities and interests….on his own time line with OUR support

  15. Lesson learned. Hair shirt back in drawer by the end of the day, please. You can only wear it for so long. And your honesty and candor have opened my eyes again so that I can continue to learn through you. Something else to think about, to help me try and be the mother my kid deserves and give him the tools for self care and advocacy. Thank you for that gift.

  16. We actually haven’t had anyone come into our home since the days of EI but that’s not to say it would never happen again. This is a good bit of info to keep securely in my heart just in case. Thanks a thousand times for your openness. It’s inspiring on so many levels and you are definitely making things easier and better for other families who are on this journey.

  17. I wholeheartedly agree with many of the comments here, Jess — from both sides of the table. As my Little Miss’s #1 champion and protector, I have tried to minimize intrusion into our home — but on the other hand, I have also had to realize that there are some areas where I am simply not equipped to be Little Miss’s teacher.

    The initiation of potty training was one such area. I’d been at it for a while and I’d clearly &$@#&ed things up. Toileting had become a colossal power struggle and my goal for reintroducing it this summer was not going to happen without outside help. Yes, it was an invasion of Little Miss’s privacy — but SOMETHING had to change to get us past the wall that had been built up by too much potty-training failure.

    I did everything I could to minimize the intrusion of our BCBA — and worked very hard to learn everything I needed to support Little Miss as we moved forward, but we needed that intrusion — that different presence — to get us off the broken record and making progress. Thankfully, we had a professional and compassionate BCBA to help us — we have made more progress this summer than with any of my previous attempts.

    I guess what I’m trying to say is that there is absolutely no absolute answer. I truly wanted to be the one to help my daughter learn that particular life skill, but it got to the point that I was the key stumbling block preventing her from taking the first step. The key, for me, is learning to recognize when you MUST step aside.

    • Oh my gosh, I don’t mean to imply that there aren’t times when there really is no other option. I thought I was making that clear, (and emphasizing that there can be no shame in getting help when we need it!!!) but heaven knows this stuff gets muddled.

      There are a myriad situations in which the help (direct or otherwise) is necessary, particularly when safety is an issue. My point is simply that I am now aware of Brooke’s right to *as much privacy* as is feasible and will do what I can to protect it whenever and wherever possible.

  18. Thank you. You are a beautifully honest writer, and I appreciate your ability to reach into my heart and share what is inside. This post and the content have been an exact struggle in my home as well. I need to be taught to teach her.. Thank you!!

  19. I love it… My child has CP and yes, she walks and run (we have been told we have the good kind of cerebral palsy). But we have a hard time with daily life skills, and we have asked for help. I wrote to the school team one day, “I know doing her shoe laces are not part of the curriculum of MA, but that is part of my daughter curriculum, so please I need help, teach me how to help her”, 3 weeks later she learned…. and that was her biggest victory of first grade.

    Asking for help is a HARD skill to learn, I am working really hard to teach my daughter that is OK to ask for help, “That’s what friends and family are for, to help us”

  20. Privacy is hard….I’m finding that out myself and I completely smack myself in the forehead sometimes. Sometimes we forget that we need to learn before our children because if they forget, we need to be the ones to remember. Makes sense? And ditto on the tooth brushing and showering – that is one I really need but nobody can seem to offer a “let them watch you” approach that does not seem to be working (in the teeth brushing – the bathing, I still have to bathe the ones under 10)

  21. Consistently your posts make me either cry or laugh my heart out. This one, though…we are just setting out on our journey with our son, and this is one of the things we are actively thinking about. But at the beginning, even though you’ve studied the thing a bit before the the diagnosis, because you’ve suspected, you find that help is hard to get quickly, if at all (we’re military). So we find we’re wanting to accept what we may not need just because it’s contact with ANYONE…thank you for the reminder that he is OUR son. WE have it laid on us to help him, and that was what we swore from the moment we knew he was going

  22. Sorry! I hit post accidentally! I was just going to end with “grace our lives with his delicious goofiness”.

  23. Once more you have given something wonderful, Jess! I have ALWAYS taken exception to having a therapist in our home. I feel like it’s kind of the one place Bobby doesn’t need therapy. You have given me the reason why. It’s intrusive within the sanctity of our home!

  24. Hi Diary!
    I have been following your blog for quite sometime now…but recently read something that I felt worthy of “popping my comment cherry”…I know bad joke. Anywho…I too am part of the autism mommy sisterhood. My 4 yr old son is autistic. And I was part of the crew of parents that took a trip to romantic Italy, only to end up in Holland (I’ll get to that reference soon 😉 and although it took some time to forget about Italy. I soon began to see the beauty of Holland. Different language? Sure. Different food? Sure. Different customs? Definitely. But just as beautiful if not more beautiful than Italy. Why? Because it’s not what I expected. This link http://m.guardiannews.com/society/2013/jun/29/david-mitchell-my-sons-autism
    will take you to a story written by David Mitchell about his son…and how reading the soon-to-be-released book “The Reason I Jump” helped him understand his son more. I already pre-ordered mine through Amazon…and I know you will too! Because this is right up your Activist Alley!

  25. Hi, Jess! I used to work as a Developmental Therapist for Early Intervention. I would come into a home and work with a child for an hour once a week. I loved the kiddos, but I felt the best overall experiences were with the few families where we “cheated” and I helped the parents with the big picture instead of playing on the floor for an hour…
    Fast forward to today – I have my own Professional Organizing business founded on the premise you describe in your post. My goal is to empower parents and provide them with the skills they need to run their home based on the unique needs of their family. For these clients, the focus is on preparing the Home Environment for success. This could mean organizing a laundry room and basement so a parent can better incorporate the teenager with special needs into the routine. Or, perhaps, we go through ALL the dvd’s, video games, and accessories to prepare a media environment for a child with special needs to successfully keep it tidy on his/her own. I have a discounted “support services rate” for families raising children with special needs and have even worked through the state as a “Personal Support Worker.”
    I am very proud of your promise 🙂

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