team brooke – the middle school version

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{image is a photo of Brooke and a dog that she met on Nantucket last week}

Middle school starts tomorrow. I’m trying to pretend I’m not freaking out. I’m totally freaking out. In order to keep up some pretense of the former, I sent Brooke’s new team the following, as I do every year. It went to the two teachers in her classroom, her aide, the school’s special ed coordinator, the school psychologist, and all of the specials teachers with whom she will interact – art, chorus, health, P.E. etc.

So yeah, this is me – not freaking out.

P.S. While Brooke was happy to have me write the letter, she did not want to help me do it. There was one part that I refused to write without her input, which you will see below, but otherwise, she pretty much said, “You do it please,” so I did.

Team Brooke,

Well, hello! While it’s hard to believe that middle school is upon us, here we are! We are so comforted in the midst of this transition to know that Brooke will be in such good hands this year. After researching just about every option under the sun, we are thrilled for her to be coming to {this program}, which we truly believe is the perfect place for her to grow, learn and flourish.

First and foremost, please know that we believe that Brooke’s education – social, emotional, and academic, is, by definition, a team effort. We take our own responsibility as part of this team very seriously, and as such, we are always, always available to answer questions, help brainstorm solutions, and support your efforts in any way that we can. To that end, we encourage and will deliver honest communication both from you to Brooke and us and from Brooke and us to you.

A couple of years ago, I met Eustacia Cutler, Temple Grandin’s mom. Of all the things that we discussed over lunch that day, the one that I have thought of the most often since is this …

“Temple’s journey is marked by shared concern and shared expertise. There was nothing more important than consistency between school and home.”

So, in that vein, we’re here to tell you a bit about where Brooke is now, some of the progress she’s made this summer, and some challenges we’re currently focused on helping her mitigate, along with a few helpful hints for getting to know her. (Since the entire team is new this year, we’ll make it as detailed as possible, so we hope you’ll indulge us if it gets a little lengthy.)

Please know that above all, our goal is a happy, healthy kid who recognizes not just the challenges but the strengths in her differences, takes pride in who she is and has the tools to live a life that fulfills her. The rest is just icing on the cake.

Please note that I’ve included links to my blog in order to expand on and offer concrete examples of some of the ideas presented here. In the blog, {she is known as} “Brooke,” her older sister, is “Katie”, and {their dad} is Luau. We do this to maintain some measure of privacy and for the girls’ safety.

 

Where we are now

 

Brooke has had a good summer. It’s never easy to be out of the routine / structure of the school year, but she’s handled it as well as we could hope. She was at {ESY} with the aide with whom she spent the last three years, {Ms J}. Most notably, it was there that she learned to ride a bike without training wheels. This was a HUGE accomplishment for her and she deservedly felt extremely proud of herself. We were subsequently able to ride as a family on Nantucket this week, which was fantastic.

Her language has progressed in quantum leaps this summer. She is adding more and more colloquialisms to her speech, including a couple of new favorite phrases: “And your point is?” and “Well that’s something you don’t see every day.” She is constantly asking what words mean (which we encourage) and incorporating them into her lexicon. Of interest lately: “Debut.” When I told her that it meant, “to be shown or introduced for the first time,” she said, “like me on my birthday that I was born.” Not quite what I meant, but one can’t really debate its accuracy.

She has been self-advocating more and more, which is wonderful to see. She tells us when environments are overwhelming for her (rather than screaming or crying, as she used to do) and is identifying her emotions more and more. This is something that we have worked on consistently over the years as we firmly believe that being able to identify and share her emotional state with others is the basis for self-advocacy and comfort. We have learned to trust her when she tells us how she’s feeling. Though the emotion she comes up with might not sound plausible through our neurotypical filters, she knows her own mind. Here’s some further reading on the topic ..https://adiaryofamom.wordpress.com/2014/08/22/zero-to-sixty/
and https://adiaryofamom.wordpress.com/2014/08/22/part-two/.

One of Brooke’s most salient challenges, especially in school, is anxiety. She worries about fire drills, failure in trying new things, being late (missing what comes next), and not being able to participate in something that her peers are doing, along with myriad other things that come up throughout the day. The anxiety can be overwhelming and thwart her efforts to do anything else. Until she is calm, she’s not able to process new information. As someone once said, “It’s kinda hard to learn math when your house is on fire.”

{paragraph removed for privacy}

She struggles to integrate sensory input and relies heavily on her sensory diet to maintain composure throughout the day. Bungee cords on the bottom of her chair, frequent movement breaks and fidgets are all extremely helpful.

She has interests that are well below the age level of her typical peers. She still watches preschool shows on television (Blue’s Clues, Dora, Elmo, Peppa Pig are favorites) and loves playing pretend with her figurines and dress-up with friends. While we continually expose her to more “age-appropriate” shows, games, etc, these are the ones to which she remains loyal. There appear to be many reasons for this – they are developmentally and emotionally appropriate for her right now. She likes the simple sets, the unhurried dialogue, and, I believe, above all, the predictability of their consistent formats. She also learns a lot from these shows – ie emotional identification from Blue, being a good friend from Elmo, calming techniques from Kai-LAN, Spanish from Dora. Mostly, though, she just finds comfort in them. For these reasons, we do not discourage her love of these shows, but instead use them as a framework for learning. For instance, when she is having trouble regulating herself, we will ask, “What do you think Kai-LAN would do right now?” and she is often able to take a step back and, in her words, “Find her calm,” as her “cousin Kai-LAN taught her to do.” (I’m not sure why they’re cousins, but if it helps her find her calm, that kid can be her Grandma for all I care. :). An example of that here ..https://adiaryofamom.wordpress.com/2013/09/10/finding-her-calm/

She also loves the musical and 1970s movie Godspell and refers to the characters all the time. For your reference: Jesus and “the Godspell workers,” consist of Mary Carson, Mary Magdelene, the other Mary, Jessie Lynn, Matthew, John the Baptist and Jeffrey.” No, those arent’ really their names, but they are to her. Keep in mind that whenever she sounds like an evangelical preacher, it’s a Godspell reference. Yes, that can get interesting, especially when she yells in the middle of Main Street on Nantucket that she can’t wait to get home to Jesus. Yes, really.

For background, Brooke’s language development was entirely echolalic. While her novel language has grown exponentially over the past years, she is still an avid scripter. She scripts ALL THE TIME. Within short order, you’ll begin to recognize the scripts. Until then, you can ask her if what she’s saying is a script. She understands the concept and can even tell you, in some instances, where it came from. One to look out for: If she says, “I’m going to go flat on my back and kill myself,” she is not threatening self harm; she’s imitating Charlie Brown telling Lucy why he doesn’t want to kick that darn football again, which is usually a way of expressing frustration or feeling out of control in a situation. She often uses the scripts to communicate how she’s feeling, but it can be very tough to place. Sometimes she’s using the actual words while other times, the words are not relevant but the emotion that a character was feeling during the scene is. Unfortunately, it just takes time and familiarity to discern. Please don’t ever hesitate to ask her, and if she isn’t able to decode it for you, ask us. After years of practice, we’re pretty good at figuring it out. A recent example ..https://adiaryofamom.wordpress.com/2014/07/25/godspell-still/ and more on scripting ..https://adiaryofamom.wordpress.com/2013/08/16/brookelish/ and http://momnos.blogspot.com/2006/03/dr-strangetalk-or-how-i-learned-to.html

 

Helpful hints

 

*Give her time! – This is HUGE. Brooke needs processing time. If you ask her a question, WAIT an almost awkward amount of time (and then just a little bit longer) before asking it again or prompting her for an answer. Please, click on the following link and read the post there to get a better understanding of what this feels like from the inside out. Pretty please – I didn’t write it:). http://ballastexistenz.wordpress.com/2008/06/08/how-not-to-ask-me-questions/

*“I was just being silly” usually means, “I changed my mind and I’m feeling a little panicky because I don’t want to be committed to whatever I just said, so please let me off the hook.”

*Knock Knock jokes / funny scripts = connection – Brooke LOVES to make people laugh and LOVES to be told jokes in return. Knock knocks and scripts make sense to her / are predictable in format. She loves them. If you’re at a loss for how to connect with her or how to help another kid to connect with her, jokes are a great place to start. Just don’t fall for the “smell mop*” one. Trust me. (Smell mop who – say it fast)

*Languages – She loves languages. She watches Dora and Blue’s Clues in French and Spanish. Echolalia (her ability to repeat what she’s heard) gives her a huge step up in learning other languages.

*Group activities – Brooke loves to be a part of a group and is even happier leading it. Morning jobs, call and response, giving her an integral role in a group activity are all great ways to engage her.

*Emotion – As above, we’re always hard at work on helping Brooke to identify and communicate her emotions to us, as it’s clearly a foundation for self-advocacy. However, we try to remain cognizant of the fact that she may have very different emotional responses than a neuroptypical person would, or that she may experience emotions themselves differently than we do, so we try hard to table our assumptions about how we *think* she feels and to give her the tools to tell us how she *does* feel. .. click here for more on this … https://adiaryofamom.wordpress.com/2013/08/23/trust-2/

*Eye contact can be very difficult. We strongly prefer to prioritize body orientation over eye contact, and try to remember that her eyes aren’t her ears. To that end, please note: she hears EVERYTHING. She may not process it right away or respond to it in real time, but it’s making its way in. further reading …https://adiaryofamom.wordpress.com/2013/04/30/more/

*Don’t dismiss the scripts. As above, they serve a very important purpose. more here ..https://adiaryofamom.wordpress.com/2013/09/11/ten-minutes-in/

* Performing – Want to bring out the best in our kid? Give her a stage …https://adiaryofamom.wordpress.com/2013/05/21/the-crystal-egg/
She cannot wait to try out for the musical. It’s a HUGE part of what she sees as the middle school experience.

* Music – Brooke LOVES music. Her absolutely, positively favorite time of the week is chorus. And music therapy. Here’s a great story about Ms J and Brooke’s foray into band ..https://adiaryofamom.wordpress.com/2013/05/31/of-faith-slingshots-and-a-clarinet

* SIBS – {removed for privacy}

* Academics – We are desperate for the right balance here between refraining from pushing her too hard to stay near grade level and underestimating what she can do with the right support. We don’t want to give up on grade level work, but also believe it’s vital that she not be thrown in over her head, ultimately drowning in anxiety because we’re asking too much of her. We hope to stay in contact on this and follow your lead as to what you find that she can do. A great story here .. https://adiaryofamom.wordpress.com/2014/03/01/proof/

* Self-advocacy – We are trying to begin sowing the seeds of self-advocacy by having Brooke participate in team meetings to whatever degree she can. We began in fourth grade and it went like this …https://adiaryofamom.wordpress.com/2012/12/21/the-best-iep-team-meeting-in-the-history-of-the-world-part-one/andhttps://adiaryofamom.wordpress.com/2012/12/22/the-best-iep-team-meeting-in-the-history-of-the-world-part-two-sowing-the-seeds-of-self-advocacy/

* Ms J – if you’re ever at a loss, Ms J was with Brooke for three years and knows her better than anyone in a school setting. If you ever need help, she’s a wonderful resource.

 

On the edge of a meltdown {written with Brooke’s assistance}

 

* What not to do:

– Bend at the waist and loom over her.

– Touch her without asking, especially from behind.

– Hand over hand without explicit permission.

– Use too many words.

 

* What TO do:

– Squat down.

– Ask if she needs a break / get her out of the environment.

– Suggest a deep breath.

– Ask her what Kai-Lan would do and then how she would do it.

– Give her even more time to answer than usual (processing slows down when anxiety is high).

– Get her outside or somewhere quiet.

– Remind her that she can cover her ears / especially in case of a fire drill, offer her headphones.

 

What really matters

 

From the vision statement in the IEP –

“Above all, we want to see her broaden her arsenal of tools, skills and strategies – especially in the areas of self-regulation, mitigation of anxiety, language and social skills – and use them to be a happy, social and confident child who enjoys life and all of its experiences.”

Brooke is different. Her differences present challenges. They also make her who she is – a spectacular, funny, crawl-under-your-skin-and-into-your-heart kid who leaves no one who meets her unchanged.

We know that middle school isn’t an easy time for any child, and we certainly don’t think it will be the easiest time for her. What we want more than anything is to help her maintain the joy she has in who she is. She likes herself and she takes pride in her autistic identity. (more here ..https://adiaryofamom.wordpress.com/2014/06/16/i-like-being-autistic/

We have no interest in making her indistinguishable from her peers. It’s taken us a long time to understand not just the folly of that goal, but the danger in pursuing it. Rather, we want to arm her with everything that she needs to be the best possible version of HERSELF and to love and believe in all that being HER entails.

We really, really look forward to working together to help her get there.

Thank you so much for taking the time to read all of this, for working with us, and, most of all, for joining us in believing in Brooke.

Please don’t hesitate to let us know if you have any questions, concerns or otherwise. We’re always happy to talk.

Warmly,

 

Jess and Luau

20 thoughts on “team brooke – the middle school version

  1. Phenomenal report. Again, I’m in absolute awe of how you express what is needed to be said. Brooke will be great in this program.

    Love you,
    Mom

  2. I so wish I had your gift of expression: so much of what you say about Brooke mirrors my daughter, but I cannot articulate nearly as accurately and precisely as you do. Educating others to “get it” requires the kind of detail you are able to provide – what a great advocate you are.
    Thank you for sharing.

  3. Wow. I needed to hear something positive about education and special needs. It is changing here where I live and not for the best sadly. Read some pretty depressing stuff today….
    We are home schooling for the forseeable future.. There is a combination of issues including medical which just do not fit neatly into any box..
    BUT I love what you write here. It has helped me reflect on our new school year here at home for my youngest and middle/high school for the oldest.
    Good luck to all….

  4. May I borrow some of your words in my own letter? They are exactly what I never knew I was trying to say…
    Your blog over the last several years has helped me become so much more well versed and articulate in this area so that advocating for my son and in turn promoting his self advocacy has been so much better. It’s my own version of echolalia perhaps. Your posts have resulted in so many a-ha moments for me and helped me help my darling boy. They’ve also helped me stop blaming myself for his autism (was I too fat, did I not do x,y, or z enough… You get it), embrace the challenges and see the gifts it can bring. Your posts help me think outside the box in terms of requesting things to help him mitigate his own challenges in school and find creative ways to help him be a part of school like in ways that work for him. So, may I borrow some of your words (with links and credit, if course)?
    Best of luck to all of you as a new year begins and thank you for all you share!

  5. OMG, thank you so much for the idea to write something similar for my girl as she starts a new school (Juniors over here in the UK). I hope you don’t mind if I copy some of this, as lots of it is so relevant (have often felt like my girl is a younger version of yours!). I wish I could write as well as you, but I figure even if I change it to my simpler style, they’ll still get the message hopefully and I’ll have given her the best start I can. So thank you!

  6. I think I need to write this type of letter for my son. He’s in special ed for reading, spelling and language arts, but nothing else. I’m curious to know that if he’s in special ed for these skills, would it make sense to be in it for subjects like science and social studies? Going into 5th grade, he will be needing to take more written notes, and read alot more textbook material. He listens and remembers the material and does well on his tests. Last year, he would sit at his desk and do absolutely nothing during the teacher’s lecture, but was only expected to draw pictures of the things they were talking about but still did nothing. (for example, for studying the different types of clouds or plant stages, just drawing the stages rather than notes). I actually went into his classroom almost everyday (because they say he doesn’t need an aide) to make sure he was doing what was expected of him, or basically poke him with a stick to make sure he’s on task. I’m just wondering anyone’s opinion on this.

    • Every kid is individual and there’s no way to know what he needs without really knowing him. I would say though that every subject becomes more reliant on literacy skills – especially writing and reading comprehension as the work becomes more complex. Many of our kids use keyboards for note taking – perhaps that’s something to think about? It takes away the challenges of physically writing and allows them to focus much more on the information itself. It can be a huge relief to kids who struggle with writing.

    • Has he had any formal testing for anything like dyslexia, dysgraphia? There are many forms of learning needs and often they can overlap.
      Often these kids can fly under the radar if there are no behaviour issues.
      As Jess says writing as it is a particularly complex motor skill and involves several things happening at once including thinking of how to form each letter etc. Why keyboarding can help so much as they can see the letters.

      • Holy cow, BINGO! I didn’t know about dysgraphia, but it sounds exactly what he deals with. I can put a name to it now, it will help alot when IEP time comes around. This is exactly what I talked about with the school psychologist today on the phone. Thanks for your input!

      • Glad you found it helpful. Hope he gets some help and support. Everyone thinks that handwriting is no big deal and should come easily but it can be hard for a variety of reasons. Yet is a very complex skill especially as they get older and have to do more, think about what to write etc…

  7. Reading this, I recognized several areas where my son is similar, and unfortunately the school system here has not recognized the need to help him. Group activities are the one thing they have recognized and they have made him a leader in several areas which I know raises his confidence tremendously.

    Emotionally, though, he still struggles. And I had to fight with the school for 3 years before I was even able to get an IEP. Being on the mild end of the spectrum, he has been able to integrate himself easily in some areas, so they didn’t see the potential issues. That came to a head 2 years ago with seemingly behavior problems, which were just his way of dealing with frustration in not getting the material.

    I’d love some advice or further reading on services to ask for to help with this aspect. What has Brooke received through the school system to help with expressing herself?

  8. We have our son’s IEP tomorrow. He is a dual exceptionality kiddo and that leads to some frustration because, “he’s so smart!” I am going to use your blog as a resource and parts of this letter fit him so well. I am lucky to have found you this summer. With both a son and daughter on the spectrum, it’s nice to come somewhere and see someone with the same dilemmas handling them positively!

  9. I just wrote a letter to Roc’s teachers today but it’s no where near as good as yours! I’ll have to bookmark this for middle school next year. xo

  10. As I anticipate another new school year, it is with a bit of a heavy heart….It will be my first year not “working” with Brooke in 6 years. Her new team has no idea what joys they have ahead of them and how much they will learn from her. I miss her but I know she is going to be ok. She truly has the best educators…yes, I mean her parents :). Good luck on day 1 and please let her “old team” know how it went. Cindy

  11. Wow! As someone who has worker with both children and adults with all degrees of special needs / autism, I wish more parents/caregivers would write out something so detailed to reference! This was simply amazing, extremely well put together! Brooke is so lucky to have amazing parents! Good luck to her on her first day of middle school! Hope her school year is amazing!

  12. I want you to know that you inspired me, and for the first time (my son is in third grade), I sent a beginning-of-the-year letter sort of like this. We have had an incredibly positive response, ranging from his teacher making a discreet little daily schedule for him to tape into his desk to the new special ed director checking in with him daily and sending me updates. Thank you so much for sharing, and for all you do to help the more clueless among us fumble through parenting our amazing kids.

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