the whole story

.

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~ Diary’s Facebook status, yesterday afternoon

(ed note: the 2nd ‘qualitative’ should have read ‘quantitative’ – that’s what I get for typing on my phone)

*

“Way to prove those tests wrong, Brooke!”

“Those doctors don’t know what they’re talking about.”

“Those scales mean nothing! The only comparison that matters is Brooke to Brooke!”

~ Comments from readers, family, and friends

*

The tests weren’t wrong. My daughter, who will turn ten next month, is speaking at the level of an early six year-old. (And that’s okay)

The doctor actually knows exactly what he’s talking about. Dreamy has been seeing Brooke since she was five. He gets her. He adores her. He sees not only what she is capable of doing in the future, but how much she does NOW. His evaluations are one of the most powerful tools we have in understanding and supporting Brooke.

My daughter’s language is at the level of an early kindergartener. And that, of course, is okay. (See above.) But it matters. When her peers are fluent in the language of late fourth grade and she’s working on answering HOW and WHY questions, it matters.

I’m not trying to minimize, nor, heaven forbid, belittle my daughter’s progress. It’s huge. And it’s to be recognized and celebrated at every turn. But it is contextual. And, if she is going to be in an inclusive educational setting, the context matters.

One of Brooke’s most significant challenges is her anxiety. It’s a demon that looms large in our lives. We’ve fought to help her control it since the beginning — since the pediatric anxiety clinic recommended by Children’s hospital turned her away because they didn’t see children ‘that young” Sometimes we’ve addressed it successfully, often disastrously, but we keep at it. And we keep at it because It’s her greatest hurdle to learning, but even more importantly, it’s her greatest roadblock to BEING COMFORTABLE throughout her day – throughout her life.

Brooke is in an integrated fourth grade classroom. She has a team of people behind her, providing the support that makes it possible for her to be in that room. And this is the stuff that they – that we all – need to know if we’re going to provide the right support. If we are to make the curricula (both hidden and overt) accessible to my kid, we need to understand her experience. And as much as we might like to ignore the context, that would do her a tremendous disservice.

The other day a friend asked for advice. Her child had been sent home from school for biting his aide. My advice was to find out why. What got him to the point of distress that he reacted physically? The only real sustainable solutions lie in figuring out how to avoid or work through the stressors that caused the escalation, not in planning for how to react after the fact. (A plan for intervention is vital, it’s just not going to solve the problem.)

In exactly the same way, if we’re going to help Brooke avoid, or at the very least work through, her anxiety, we’ve got to know what’s causing / exacerbating it throughout her day. And it doesn’t take a whole lot of thought to realize that putting a child with the functional language of a kindergartener in a fourth grade classroom is likely to cause some anxiety. The awareness of the disparity in language helps us understand how to better help her in (and out of) the classroom.

We don’t live and die by these tests. They ain’t the Sermon on the Mount. Their results are subject to – and often do – change. But they matter. They tell a part of the story that we don’t see with the naked eye. And that’s okay. I spent some time over the past few weeks beating myself up for not having seen it. For somehow missing that she went from the 37th percentile to the 1st in one year. But I’ve retired the hair shirt for a while. Because I realized that it wasn’t my job to see the comparison. It was my job to see my child. To recognize the miracle of her progress in her way. And then to go and find out the rest of the story so that I could do everything in my power to make her comfortable in her environment.

That’s my job. So that’s what I’m trying to do.

The tests matter. They just don’t tell the whole story.

~

β€œWe must pray for miracles, work like crazy for miracles, expect and demand miracles, and for goodness sake, we must see them for what they are when they happen.”

~ Words I read years ago from the mom of an autistic teenager that now live inside my soul

19 thoughts on “the whole story

  1. ” It was my job to see my child. To recognize the miracle of her progress in her way. And then to go and find out the rest of the story so that I could do everything in my power to make her comfortable in her environment.”

    Yes, that is your job and you’re doing an excellent job at it!

    Love you,
    Mom

  2. Today, I say THANK YOU. Thank you because you have inspired me to ACTION for my own child. Not because I don’t act and advocate, and talk, and beg, and plead for my child every day, because I do. But the action to dig deeper. To start OVER again so to speak at where we are TODAY. To again ask the questions of the professionals, and the teachers, and my daughter and myself… Why? Why the anxiety? Why the stress? How to intervene so that it does not get so magnified that we are paralyzed….. daily? And then the paralyzing leads to being helpless and hopeless. HOPE is powerful my friend. I never want my child to be so riddled with anxiety that SHE loses hope.

    So…. THANK YOU!

    Blessings Today!

  3. The saying here is that it’s all about the prerequisites. Don’t just tell me what my daughter isn’t doing, tell me what we need to do to get her there. I have an instructional design and human factors background, which, ironically was like taking parenting 101 for me. The medical tests do matter–the resulting labels do not. For instance, a doctor can not look at an ultrasound and determine which child will be a star baseball player, or a symphony pianist, or a mass murderer for that matter. So, why do some doctors think they can predict the future when a disability is found? Medical tests show the physical, the challenges to overcome. They do not show possibilities, or courage, or the brain’s ability to adapt, or a family’s dedication. They do not show the future unless we let them.

  4. My son struggles with anxiety, too. What I find inspirational about your post is that you are realistic about Brooke’s challenges, but you also recognize and appreciate the wonderful progress she’s made. And you also know how well you are doing your job as her mother. She is really lucky.

  5. And sometimes success for our kids means no longer trying to include them, but recognizing that being functionally X-Y years old when you’re in a room full of X-year-olds is not a fair thing to make your kid do. (Says the mom who knows that her son was JUST FINE in inclusion through sixth grade, but who is happily, almost merrily, having him put in a pull-out academic program for middle school rather than have him work so damned hard to simply speak the same language that he can’t learn anything any more.)

    Thank you for always, all ways, making us think a little deeper about what we do every day, usually unthinkingly.

  6. Hi Jess, been reading for a long time, haven’t commented before. My mornings are better bc of your blog.

    My ds is in a very similar situation and sounds a lot like Brooke. 8yo and in a regular grade 2 class with an aide for most of the day. But the anxiety and overwhelm and lack of language (he’s at 1% for language comprehension and about a 5yo for expressive) is really catching up this year. We’ve been offered a placement in the community classroom for September (autism class for kids similar to my ds), with integration for classes that he’s successful in and feels good about. He can eat lunch and do recess with his “buddies” from the regular class, if that works.

    I swore I wouldn’t do it. I am a huge believer in inclusion. But at what point do I recognize that this is not about MY feelings, but about acknowledging that a regular classroom, with 20 kids and noise and constant higher language demands, is too much for my ds and his anxiety and sensory system? That he doesn’t get a chance to have those small quiet group interactions that he CAN handle. Am I being unfair by trying to make a reg class work? I am not suggesting that YOU are being unfair; would just love to hear how you (and your readers!) decide, year to year, or month to month, what the best placement is. I’m trying to read as much as I can from adult autistics about this, too. Their feelings on integration/inclusion. I feel like there’s no clear solution.

    If you have a past blog that addresses this, I would love to be directed to it! πŸ™‚

    (And, I am always considering my options, like combining the community class and regular class integration with homeschooling, or with private learning centers, etc etc.)

    Thanks for writing for us all.

    • Amanda,

      I’ve gotten a couple of similar questions today and I have lots of answers but no short ones, sooooo … I’ll address the topic in a follow-up post – hopefully tomorrow, but if not soon. These are REALLY important questions to continually ask ourselves and when possible, our children.

      J

    • But, in the meantime, you might want to peek at the post ‘Least Restrictive Environment’ from October 17, 2012. I do at least scratch the surface of these questions there.

      • Just the fact that you replied to me has brought happy tears to my eyes. Thank you so much. I really can’t tell you how less alone you have made me feel. Off to do more reading!

    • Amanda:

      You pose an important and relevant question. I don’t know your son or how he interprets his environment…but YOU do. If you could create the ideal environment for your son to learn and grow and thrive in, what would it look like? What do his teachers envision it looking like? I have a feeling it might be a combination of both of the models you described. Perhaps he needs to learn (academically) in a less stimulating environment, but could be included for a portion of the day in an inclusion room to maintain and grow his social skills.

      Sometimes the most complicated of questions have the simplest of answers. —>Go with your gut.<— Forcing a round peg into a square hole will never change the shape of the peg…but "exposing" the round peg to the square hole (and vice versa) will undoubtedly culture an appreciation for diversity and stimulate gradual growth and flexibility.

      And you know what? You're right! You may re-create the wheel for this little man of yours and he will and change what he needs three months from now! And you what else? I bet I am not telling you anything you don't already know. I was just hoping to offer my support for the restless nights ahead, because if you're anything like me those nights are part of the package.

      Stay Strong Mama!

      • Thank you for this. πŸ™‚

        Right now, he has an EA (educational assistant — I’m in Ontario, Canada and I’m not certain we use the same terms up here) for about 60% of his day, and much of that work time is 1:1 outside of the class, much like Brooke. He even spends some time in the ASD class, for sensory breaks etc. Our EA is amazing; she has a son with Tourette’s and OCD so she “gets it” and truly treats my son as she hopes her own son is being treated at his school across town.

        I would leave things as is, but, my problem, my huge problem, is that in our Board, a student with a regular class placement can’t have an EA formally attached to them; so while our principal does the best she can and my son has consistency with his EA support each day, if a new student arrives next week who has safety issues, we could very well lose our awesome EA, have no support, and there’s not a lot I can do. (Yes, I could fight it and would, but there would be a stretch of time where my son would be really struggling.) Also, there is a chunk of my son’s day where he has no support, and those times can be, umm, not so good some days (he’s acting out, being disruptive — overwhelmed).

        The placement being offered (autism classroom) has max 6 kids, with a SERT and 2 EA’s. He would be integrated into a regular class, and consistently the same one, with an EA, for the subjects that work. So basically he’d be in ASD class for math and language, and integrated with support for the others. And with this placement, he would be guaranteed the support. It’s his, and will not and cannot be changed bc it’s part of his IPRC (identification/placement).

        The school has pointed out that his school day would not look that much different than it is now; he’s already being pulled out for tough subjects like math and language, and integrated for the easier ones. The only difference is that the ASD class would be his “homeroom”. There’s my hangup, but I need to get over it.

        I have asked my son, little questions here and there, about what makes him feel best at school. He’s said (in his way) that he likes the ASD class. AND he likes his buddies in the regular class. That’s his answer. And I guess that makes it easy, doesn’t it? πŸ™‚

      • This reads to me like you already know what to do. πŸ˜‰

        Oh, and the fact that the EA can’t be assigned to a kid for the very purpose of making a mainstream classroom accessible? Needs to be changed. That can be the second thing you do. πŸ™‚

      • Oh, and … I wonder what we would say if a child who uses a wheelchair for mobility was told that said chair would be available to him for 60% of his school day. *sigh*

  7. Thank you for continuing to tell your story and that of your family so clearly. Not only are you helping Brooke to be comfortable in her environment, you inspire and remind me to be more observant and ask both broader and more specific questions when I see someone uncomfortable in my classes (or in the world). You are an amazing, strong, wise, loving woman, and a wonderful mom, Jess! Keep celebrating every miracle! I am celebrating them with you! Miss you all like mad. xo

  8. We’re also addressing this issue for the first time with my daughter in 3rd grade. She has always been in an inclusive classroom. Half-way through this year we modified her IEP and she now has pull out services twice a day in math and reading comprehension which are the areas she finds most challenging and cause anxiety. In reading fluency, she is ahead of many of her peers so we work to find ways to highlight that such as reading out loud to the class or being a guest reader in the kindergarten class. It’s a balancing act. And so helpful to hear what others are doing.

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