what she needs

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{Image is one of my all-time favorite pictures of me and Brooke. We are in the hospital. She is three days old.}

You will doubt yourself. You won’t trust your instincts right away. You will be afraid that you don’t have the capacity to be what your baby will need you to be. Worse, you’ll think  that you don’t even know what she needs you to be. You do. I promise. You will.

– From Welcome to the Club, Diary, 2009

I’m sitting on the floor of Becky’s playroom, watching Brooke swing back and forth, back and forth in the exact same hammock swing that hangs from the ceiling in our basement. There’s a sense of familiarity here, even though everything is foreign.

With each trip, the edge of the swing brushes against the bookcase behind it.

Scrape.

Pause.

Scrape.

We’re alone in here, escaping the overwhelm of the barbecue outside. It was supposed to be fun, but the cooing babies, the Winnie the Pooh movie projected onto the screen on the side of the house, the heat. It was a perfect storm of Too Much. So we’re here, doing what we do.

I look around the room.

Every toy, every item, seems to have a purpose, a demonstrable, dedicated educational design. Numbers, letters, maps, binoculars, musical instruments .. there’s not a thing here that couldn’t double as a classroom accessory.

Nothing.

I pick up the binoculars and look through them. The room is distorted, like a fun-house mirror. Brooke lets loose an anxious yelp. I put them down.

She swings .. back and forth .. back and forth.

Scrape.

Pause.

Scrape.

The heat in the room, already heavy, immovable, becomes unbearable. A question hangs in the thick, moist air.

Did we fail her?

Becky and Brooke have been together since preschool. Becky was nonverbal then. Through kindergarten, I’m fairly certain I never heard her speak. Had I been asked to describe them both, I’d have said that Brooke was lightly touched by autism while Becky was far more severely affected. I knew so little about the fluidity of such descriptions. 

Today, it is Becky who looks out for Brooke. Becky who talks a mile a minute. Becky who is independent, self-assured. Becky who knows her way around town, devouring and memorizing maps and routes and traffic patterns. Becky who said, just moments ago, “Luau, Luau, I’m worried that Brooke is going too high on the swing. Luau, I think you need to tell her that she might get hurt.”

It was Becky’s mom who said then, “I’m pretty sure you won’t have to worry about Brooke in middle school. She’s got Becky to look after her!”

Now it’s Becky, whom I thought was so much more disabled by autism than Brooke, looking after her.

At dinner one night last year, Becky’s mom told us about their morning routine. About how important it was to her to make sure that Becky could be independent because, “someday she’ll have to be.” About how she got herself up in the morning and made her own breakfast and got ready for school on her own. Luau and I nodded and smiled. I panicked.

Brooke getting herself up and making her own breakfast and getting herself out the door every day for school? Um, no.

Were we failing her?

A few weeks ago, Becky’s father very generously sent us links to a couple of the websites that he said they would be using with Becky during the year. Reading, writing, math. Extra practice, he said. I had tried to force myself to look at them. I couldn’t. It’s all my girl can do to manage both school and the required homework. Some days it’s all she can do to manage dinner. I couldn’t fathom the idea of extra anything.

But Becky is so capable, so conversant, so knowledgeable. Was this why? Was it the Extras that had made the difference?

Were we failing Brooke?

We left the playroom. Try as she might, my girl was beyond her limit, so we left Luau and Katie at the barbecue and went home. She put on Elmo’s World and began sorting her castle friends into groups for their “Color Day,” as she does. And does. And does.

I watched her play. Her entire body exhaled as she eased into the comfort of her routine. Should we be reading something? Doing math? Checking out the websites? I trusted my answer. The next morning would bring major change. She needed the downtime.

 –

A week later, I would read Susan Senator’s blog post, The Heartbreaking Quiet.

Sometimes Nat is not active at all, she wrote. Sometimes he just moves from one couch to another. I can’t get away from feeling like this is something that should not be. I remember years ago, a behavioral consultant who believed in that ABA bible, “Let Me Hear Your Voice,” told us we needed to scaffold with Nat, and to chain. Lots of construction, building — and also keeping down. The eternal struggle of ABA. We’re supposed to wrestle the autism to the ground, like Secret Service agents.

So I didn’t do that. Not really. People think I’m such a good mother but I did not do that. I got tired. Depressed. Lost hope. I didn’t consistently practice the ABA. He’s almost 25 for God’s sake and I’m still beating myself up for it. I did not believe it was the way.

Was I wrong? He is so quiet. If I had believed and converted, would I be hearing his voice more?

My heart just breaks for him. How is it okay, living such a quiet life?

I did the best I could, but my best was at times anemic, tired, mediocre. And he suffers for that. He is only as engaged as I make him be. That’s what a teacher told me when he was 5. It was all up to me in the end.

The words I wrote to Sue were as much to myself as they were to her.

oh, sue .. i get it. so much. more than i can explain right now.

but please know this – you are exactly the mom that your son needs you to be. not anyone else – you. you, who listened to your mama gut to protect him. and that is what you did.

you are perfectly imperfect at this, as are we all. the ones who constantly question? well, those, my dear, are the very best.

hugs.

Brooke isn’t Becky any more than she’s Nat.

What works for Becky and her family works for her and her family.

What works for Nat and his family works for them.

What works for us works for us.

Becky devours maps and memorizes traffic patterns; that’s what she loves to do.

Nat is sometimes quiet; that’s who he is.

My girl needs her downtime; and she will get it.

All three of them have come so far in their own ways. All three of them will continue to grow and change and progress, each at their own pace, just as all people, autistic or not, do.

As their parents, none of us is perfect. But, at the end of the day, if we gather all the information that we can, take our cues not from the “experts” but from our kids, learn from the shared experiences of those like them, respect their needs and follow our guts to protect them from that which feels more harmful than helpful for each of them as individuals, I truly believe we will be all that we can, at any given time, be – real, imperfect people who love them, guide them, and protect them as well as we know how.

 

22 thoughts on “what she needs

  1. “…I truly believe we will be all that we can, at any given time, be – real, imperfect people who love them, guide them, and protect them as well as we know how.”

    Jess, I truly believe this applies to any parent anywhere of any child. It has never been a perfect science.

    Love you,
    Mom

    • Awww. My mom says this to me, too, and, then, doesn’t give herself a break on how she raised us, even tough we’re grown, and happy.

      One of the lessons I learned, and it took me a while to learn, is, to use the same words, to presume competence in moms. Absent abuse or serious consequences for myself, I made a pact with myself, to presume that every mom is doing the best for her own child, that she knows herself, and her child, and her family, and that I don’t. I can make my choices without saying that someone else’s choices are wrong.

      I’m pretty good about giving myself the same benefit, and I hope I will continue to be, even if I roadblocks.

  2. I was worried when I started this post as I have some of the same fears as a teaching assistant. Your last paragraph was reassuring. I question my methods and choices as a parent and can only imagine the extra weight carried by parents of children with special needs.

  3. I too so needed this today. I thought we were doing it right. I mean, I think we are. But then an ignoramus opens her mouth yesterday and the words penetrate me like a knife and then I question myself and the mother that I am to this child. Not my other two, this one. The “hard” one who is my angel straight from heaven who proves people wrong every damn day. Thank you once again, I will likely reread it several times over the day. ❤

  4. Those of us that care do the best we can. Each child an individual with different needs and development.
    I can relate to what you say about quiet time, the work to find ways to help sensory overload.
    Yet with time, the right support things can improve.
    In a world were time is such a mixed commodity and pressure ever increasing on everyone including the children sometimes it is what they need most of all.
    That has been our experience-time, the right support/help and parents doing the best they could in spite of the “experts” who failed us on so many levels.
    There is no right way, no well written guide book in all this.
    Stay strong all the people who care enough to help.

  5. Oh wow. Yes this. We do the best we can for both our girls, for the family. How can you ever tell if that’s the right thing, the thing that will advance them the most? But we ask that question, and feel that guilt, for all of our children, ASD or not. I think we just feel it more keenly for ASD children. Too many ‘what-ifs’. No-one can say they could have done a better job, because they can never be sure that their methods would work with someone else’s child. Thank you for posting this and giving everyone the chance to jump off the guilt train, even if only for a little while x

  6. Just as there is no one autism, there is no one path to helping our autistic kids. If I gave my autistic daughter only educational toys, that would deny her the chance to work with toys that express her interests. Some of our kids are more creative and some are more factual. Listen to your child; they tell us what they need to grow and be happy. My daughter works out social problems with her dolls. My autistic son creates manga. Both of my kids are on the spectrum and both have different autism and both have different needs and ways of dealing with life. Please, remember that just as we shouldn’t judge our children by those that are neurotypical, we shouldn’t judge them against other children on the autism spectrum.

  7. Each child is a complete unit, complete and individual with individual requirements, dreams, coping mechanisms and an individual future. Both my sons are on the autistic spectrum. As they were growing up it was always the younger one who seemed to be affected the most, who had the hardest time, who struggled to cope with everyday situations. I worried that he would never cope in the world as an adult. The older one was more socially capable, seemed to manage school, was relatively easy to encourage, teach, support etc. Now they are 21 and 25, the youngest left home 3 yrs ago to live with his GF 500 miles away. He’s had some struggles, some difficulties but has dealt with them and lived to tell the tale. He works, he copes very well with the relationship and the fact that he’s living so far away from home. The eldest is still living at home, he is nowhere near as socially able as his younger brother now, he makes little effort to find work, to go out and meet people, to do something with his life and I’m left feeling like I’ve failed him because he seemed to cope so much better as a child than his brother did. I have to have faith that they are both exactly where they need to be. We can only ever do what we feel is right in any given moment and as long as what we do is based on love and acceptance of who our kids are then it’s the right thing to do.

  8. Thank you so much for this. Every time my son has another evaluation, or there’s another problem at school, I listen to a litany of “have you thought about…” and “he really needs…” Even if had the financial resources for everything suggested (I have the resources for exactly none of it, and that’s a whole other issue), WHEN, exactly, is my son supposed to be, well, my son? When is he supposed to have time to just be a kid? He’s on a school bus at 7am and doesn’t come home until about 4pm, if not later. So I listen to my gut, which says no – no more. He has as much as he can handle, and he will grow at his own pace. In return, I have my child, and not someone’s science experiment being therapied to death.

  9. I often feel this way and wonder are we doing the right things for our daughter. We have chosen to let her have a childhood and not bombard her 24/7 with therapy and treatments. She has many struggles, we pick the ones we feel are most important and work on those. She does social skills groups, gets speech and OT at her special needs school and takes medication for her anxiety. I also try to remember that she’s going at her own pace, the old adage it’s a marathon not a sprint. Plus she’s happy, confident, smart, loving, and uniquely her. Just as she should be. Thank you for writing what we are probably all feeling!

  10. I’m a lot like Becky’s parents. I had a completely non-verbal preschooler, and we’ve always (gently, of course) pushed, and treated K like we would any other kid. Sometimes I feel badly, because I know it ups her anxiety, but then her anxiety is also high when we don’t push at all. We truly want independence for her, which will never come if we look at her as anything other than a 10 (11, 12, 13) year old (which she also deserves.)

    My struggle is more asking myself do we push too much? Or, how come K isn’t more like a “Becky” when we have worked so hard (she’s worked so hard), and she’s still the kid melting down at a party, or can’t be successful in mainstream school.

    I think we all wonder “what if” with every decision we make, and it’s hard because of course we compare. It’s impossible not to, no matter how much we say we shouldn’t. I just never want to look back with regret. No matter where K ends up in life, I’ll know we gave her the best chance possible.

    It would be a lot easier to let her hide in her room on her iPad all day, that’s for sure, but it’s not helpful in the long run. We’ll keep pushing, and she’ll keep progressing, and even if things don’t turn out like we plan, we’ll know we didn’t fail. Failure only happens when you do nothing at all.

    We all do what we think is best for our kids. We just have to sit down sometimes and ask ourselves if we are being honest with ourselves about what IS best, what goals we’ve set, and, most importantly, what do our children want. Achieving what K wants from life, that is goal #1. Asking her and trusting in her, so, so important.

  11. Timely read for me . . . Lately I’ve been telling myself I’ve failed my boys. I should have done more, maybe if I had they would be out there in the world . . . I know in my heart I haven’t truly failed them, but the what ifs can be suffocating.

  12. I think one of the biggest problems is developmental timelines are in place for most (but not all) NT children. And autism, being the spectrum that it is, has no guidelines for when the children should develop, so the message to us parents is to push our children to “catch up” with the other children. Which is absurd, and frankly, more than a little insulting. I’ll admit, there are days when I would like to speed through the challenges, to know that in the end everything will be ok. But if there’s one thing autism has taught me, it’s to slow down, to forget the way things are “supposed to be,” to stop competing with others and to enjoy the life I have and celebrate my children every day. And if it takes my kids ten more years to achieve “independence.” Who cares? If they live with us forever? What wonderful roommates they will be for us! I’ll admit, when we are home, I don’t push my boys. I let them be. They work hard enough throughout the day and I want them to remember being kids, of times when they can sit and line up their insects and trains and spin to their hearts desire and swing and jump and play, with no one telling them they are wrong or correcting them. Maybe this will delay their independence. Maybe independence was never in the cards. Maybe even I’m hindering their independence. I don’t know. I do know that life is far too short to be spent constantly working.

  13. Your words…..I close my eyes…..I take a deep breath…..I let the heavy feeling in my stomach rise….that “I feel sad and I don’t know why” which has found a home weighted under my eyes and crouched on my neck…..it begins to move….lifting up….moving away…with every breath come tears…….the sadness and the guilt they are released…..the weights they are lifted…..taking there place…..gratitude…..peace….and hope….and I say thank you and Amen.

  14. I loved what Susan wrote and your words as well. It’s a struggle, a dance, a balancing act. Some days, it’s easy to make the decisions or at least feeling like we’re making the right ones. Other days, not.

    I was the first one among my group of friends to have children and I reminded my friends when it was their turn and the panic hits “you are an imperfect human being raising another imperfect human being. And that has been the story of the whole human race. ”

    I try to be that kind to myself on my doubt filled days. Try being the operative word 🙂

  15. I woke up with that sinking feeling in my gut (AKA anxiety) and immediately the negative internal voices started their chorus: “You should go to bed earlier.” “You should wake up earlier.” “You need to get a better paying job.” “You’ll never get a better job if you don’t lose weight.” “You need to exercise.” I almost couldn’t read this post for fear it would just add to the chorus: “Why don’t you do that for H?” “Why do you always insist his teachers cut him slack with homework?” “How will he ever be independent if he can’t even finish the math worksheet and writing each spelling word three times in alphabetical order?” (That one is absurd enough it makes me laugh . . . but usually after it has added to the anxiety.) And every single self-doubt you shared resonated with my negative voice inside. Sadly, it was saying “See, I told you so!” Yet even with all of the negative internal messaging, my mommy gut stays firm. And my son seems to benefit, thrive even, from its instructions. I just wish my mommy gut would learn to mommy me.

  16. I think you sound like an awesome mom. Every kid needs some down time, and some kids need more than others. To me, having to be concentrating on something educational or therapeutic every waking minute of the day sounds awful!

  17. I love reading your posts. I really don’t know much about autism or what it’s like to have a child with autism. One of my good friends little brother has autism. My aunt used to babysit an autistic girl who used to hit us with a spatula. My aunt taught her sign language, she’s now living on her own in an apartment. My nephew has high functioning aspergers. That’s all I’ve been exposed to.

    I don’t know what you are going through. The things you do are amazing. I find myself as a fellow parent feeling some of those same worries and having some of the same thoughts, not all, but some, for my own son. He does not have autism. But as parents we struggle to make sense if what we do is working.

    Did I mention, I love reading your posts?

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