team brooke 2013/14

Ed note: Yes, I do this every year. And yes, it’s a pain in the arse to write. But I think it’s worth the time.

I believe that writing to the people who will work with my child and referring to them as a team matters. I believe that telling them who she is and how to connect with her matters. I believe that telling them what we, as a family,  think is important (and what we have learned is detrimental to her development / self-esteem) matters. I believe that telling them that we are there for them matters.

So, yes, I do this every year. And yes, it’s a pain in the arse to write. But I think it’s worth the time.

**

Hello, team!

We hope you all are thoroughly enjoying the last gasp of summer before we all head back next week. I know we all say it every year, but I swear time really does fly.

We are thrilled to have Brooke in the Integrated classroom again this year. We are certain that she will continue to build on the incredible progress that she made last year and that, with the support of this fabulous team, she will thrive in Ms M and Ms K’s room.

As always, 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 consistent, honest communication both from you to us 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.

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. So here goes. But …. before we begin with “our part,” we’d like to hand over the proverbial mic to Brooke so that she can tell you a little bit about herself. The following was a text conversation (which is often easier for her than speaking or writing when the subject matter is difficult or overwhelming) about school:

Jess: Okay, Brooke, 5 questions, ready?

Brooke: I cannot wait for 5th grade.

Jess: Awesome! What do you want to learn in 5th grade?

B: How do 5th grade concerts work?

Jess: Ooh, great answer! Okay, what is your favorite thing to do in the classroom?

B: Meeting.

Jess: Question 3. What job do you like to have in the classroom?

B: Line leader.

Jess: Excellent! What is your favorite place to be in the school?

B: Art.

Jess: Okay, last one. You’re doing GREAT! What do you like to read books about?

B: Thanks. Mudge and Henry.

So there you have it – all you really need. But just in case, here’s just a little added insight from the peanut gallery. Oh, and .. for anyone so inclined, you are also welcome to read my blog, http://www.adiaryofamom.wordpress.com , to which you will see that I refer you in certain places below for more information.

Where she is now

* Truth be told, the end of summer is not easy on our kid. Never has been. There is a three-week gap between the end of ESY (Extended School Year) and the beginning of school. The lack of predictability and structure is hard. As such, she turns to old routines for comfort. Put differently, she regresses, but I prefer the former as it acknowledges the “why” not just the “what” of her behavior. Some examples of said regression includes .. watching an old favorite potty training video over and over (and over) again. 90% of her language is scripted this time of year – much of it from Blue’s Clues, Ni Hao Kai-Lan, Dora and Godspell. The best are the mashups she creates by taking characters from one and running them through the scripts from another. It’s incredibly creative. More on scripts to follow, but you get the idea. End of summer = hard, anxiety high, scripting comforting. Moving on.

* Her language is expanding! To wit, she told Katie the other day that she was so funny, she could be a comedian. Those of you who have been around a while will know how huge that is. She has, as always, added a few new favorite responses in her arsenal this summer. One that I love is a very enthusiastic, “But of course!” when asked mundane questions like, “Would you like another piece of cheese?” It’s sort of awesome. And by sort of, I mean completely.

* She is identifying emotion! Her repertoire of identifiable emotions still remains very limited (happy, mad, nervous, scared, silly), but she is using words to tell us how she feels more frequently. We’ll take it.

* She is anxious. When given the choice, she’d stay home rather than go anywhere — every time. (See, end of summer, above.)

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?

http://ballastexistenz.wordpress.com/2008/06/08/how-not-to-ask-me-questions/

*“I was just being silly” = “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 = connection – Brooke LOVES to make people laugh and LOVES to be told jokes in return. Knock knocks 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.

*Languages – She loves languages. She watches Dora and Blue’s Clues in French and Spanish. Ms M, I heard a rumor that this might be a fun point of connection ;).

*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 – 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 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/

* Scripts – Brooke’s speech development was strictly echolalic, meaning that she repeated words and phrases from movies, books and every day life. She still does this. A lot. And it’s easy to dismiss the scripts because they appear to be nonsensical. Please note, however, she is almost always communicating something with them. Once you become familiar with some of the more common scripts (ie from shows like Dora, Blue’s Clues and Ni-Hao Kai Lan), you’ll be able to recognize them fairly quickly. But, when you begin to look for the patterns, you see that she often communicates overwhelming emotions using the scripts. Ie – when in the car she’ll script Elmo’s “Are We There Yet?” song in which he is clearly frustrated and wants out of the car. When she is overwhelmed / scared, she will often run through Tolee (from Kai Lan) hitting in frustration or Mary Magdalene from Godspell being afraid of the fire drill. The content of the scripts can communicate far more than one might think at first glance. Further reading …

https://adiaryofamom.wordpress.com/2013/08/16/brookelish/

and

http://momnos.blogspot.com/2006/03/dr-strangetalk-or-how-i-learned-to.html

* Performing – Want to bring out the best in our kid? Give her a stage …

https://adiaryofamom.wordpress.com/2013/05/21/the-crystal-egg/

* Music – Brooke LOVES music and has been talking about chorus (and the 5th grade concert, because, see “performing”) all summer.

https://adiaryofamom.wordpress.com/2013/05/31/of-faith-slingshots-and-a-clarinet

* SIBS / Skin Picking – Brooke picks at her skin, particularly when anxiety is high. She knows that it’s “not okay” so she makes an effort to hide it. We’ve tried everything under the sun (including the bracelets that she wears every day for fidgeting), all to no real effect. Any help / ideas / redirecting here is / are greatly appreciated.

* 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.

* 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 this last year and it went like this ..

Part One .. https://adiaryofamom.wordpress.com/2012/12/21/the-best-iep-team-meeting-in-the-history-of-the-world-part-one/

and

Part Two .. https://adiaryofamom.wordpress.com/2012/12/21/the-best-iep-team-meeting-in-the-history-of-the-world-part-one/

* Ms J – We are so blessed to have Ms J returning as Brooke’s translator / supporter / cheerleader and mentor. Other than Brooke herself, Ms J is your best resource when it comes to understanding our kid. She knows when to push and when to back off, when to facilitate and when to disappear. If you’re at a loss, try Ms J.

What 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 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.

Onward!

Jess and Luau

* Knock knock, who’s there, smell mop, smell mop who.

(Say it out loud, fast.)

See? 

13 thoughts on “team brooke 2013/14

  1. new year for brooke! it’s challenging and scary and exciting then amazing then challenging again, then even more exciting. really great to hear that her language is expanding…mostly because, when she learns a phrase? she uses it so well and we get to read these awesome posts about it. “but of course” being my new favorite.

  2. That is awesome and I am completely sure that Brooke’s team is beyond appreciative of receiving that letter. But of course! My guy has Prader-Willi Syndrome and he often gets little phrases that he loves to use like that one that inevitably makes an ordinary conversation extraordinary. I personally think he responds to our response (laughter, amazement), and then begins to use it regularly. 😉
    I wanted to offer a suggestion about the picking. Almost all kids and adults with PWS have problems with skin picking ranging from mild to disastrous. Our group has found a supplement that actually helps many of our kids a great deal. Some go from severe picking to little to non-existent. Others still see a great deal of improvement. Of course, there are always a few that do not improve. I know what it is like to see your child destroy his/her body, without intention, but is achingly unstoppable. The supplement is called N-Acetyl Cysteine. There is a company called Pharma-NAC that provides individually wrapped effervescent tablets (can be split for dosage) which is extremely important for preventing oxidation (and loss of efficacy). If you look up the supplement it is also given for respiratory or immune problems as well. Anyway, I have no connection to this company, only a desire to help others if I can. If you are at all interested, feel free to contact me. I can give you a name of a doctor who sees hundreds of our kids (not easy for a rare disease) and pays attention to everything. We collectively adore her. I’m quite sure she would be happy to talk to you about it.
    Much love and peace for this difficult time of year

  3. Thanks again for your wonderful words. I forwarded the link to this to my son’s Speech Pathologist and Resource Teacher. We had an informal meeting today to get a jump on a successful year for him in his first grade inclusive classroom and they are very supportive.

    Your words, your experience has helped so much. Thanks to you, we are looking at sharing his challenges with his class in an inclusion focused way. His sensory seeking and social cluelessness can be “annoying” to his peers, so we want to help the kids understand, help HIM understand, and have them be a subtle part of his team. Knowledge is power 🙂 Knowing that inclusion is the goal but that it may need to be modified to prevent overload, facilitate learning, etc. has been so helpful. I brought that up today, that maybe he might NEED alone time/office time for the self directed work – that “modified inclusion” piece. I probably wouldn’t have thought about this option if it weren’t for your blog.

    Thank you so much for sharing your experiences. It really has made an impact for us and helped me have the courage and knowledge to advocate for my son. Hugs!

  4. Letters (and first week of school meetings) are such a wonderful way to open communications. School starts next week for us. I have written the letter for my son that is about to start middle school (6th grade), but am procrastinating on the letter for my 4th grader

    Ari

  5. I’m going to have to steal this idea. I’ve done a letter in the past about who Ethan is, and some tactics for dealing with certain behaviors, but not to this extent. It is so helpful! Thank you for sharing!

  6. I love that you do this. I did it also for my son. I’m not as worried about the teachers “getting” him as I am about the students. He is going to a new, larger, school for high school (his choice). He has an alphabet list of learning disabilities – some that seep into his ability to socialize well .. and I am so worried that he won’t make friends… He is such a good kid – and wants so desperately to belong but between his LDs and his inability to participate in school sports (where most High School kids make their friends) – I’m worried he is going to end up being the kid sitting by himself all the time and it is breaking my heart. Of course I don’t and won’t share this with him. I just try and encourage him to talk to others and to find other clubs he can eventually join to meet other kids… and I worry … seems all I’ve been doing this past week.. worrying. ((sigh))
    Brooke is in great hands – it’s been so wonderful to watch her grow this past year and see all that she, and you, and her family have accomplished. 🙂

  7. Pingback: A Winning School Year | Manitoba Families for Floortime

  8. Picking and anxiety. I’ve seen and heard of this working. That wooden massage rolling tool from bath and body works. Use it on the back 10 min a night every night for 2 weeks before bed . The picking will reduce. As crazy as it sounds I’ve worked with some with horrible picking problems and it helps.

  9. May I post a link to this post in some of the autism groups I belong to on LinkedIn?

    There are some autistic adults present there, but not many. Often the perspectives, articles, etc., are from academics/care providers, etc., and sometimes parents, but not often. I’m hoping to build a career in advocacy, and as part of that I started a blog that is a collection of perspectives of those on the spectrum. I’m walking the walk by putting those words out there to people who NEED to read them and seem to not know they exist.

    Your advocacy inspired me, the words and experiences of autistic adults, the experiences of your family that you share in spire me. Shifting perspectives is such an important thing, and your words helped me do that. I’m hoping that by sharing real words/experences of those who live the spectrum day-to-day can shift a few more 🙂

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