team brooke

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OK, so I have a million things that I’m dying to share with you. There’s Disney, of course, the stories from the trip – some lessons that we learned and some that perhaps we still need to teach.

There’s my visceral and lingering reaction to the fabulous movie, The Help. There’s the story of the Charlie Brown Mum and then of course there’s the anxiety that bled into everything we touched this weekend.

But first, there’s the beginning of school.

The other day, a reader asked what strategies we’ve employed over the years to help Brooke make the progress that she has thus far. I answered her as well as I could, listing off the various services and strategies that have worked for us, attempting to make it clear that what works for Brooke – well, works for Brooke. We’ve all heard it a thousand times before – when you’ve met one person with autism, you’ve met ONE person with autism.

Nonetheless, I told her that we started early with ABA (though for us, ‘early’ meant post-Early Intervention due to a relatively late process of identification and diagnosis) and intensive speech therapy. I told her that as Brooke’s language has developed we’ve relied heavily on Michelle Garcia Winner’s Social Thinking. I told her that we’ve been lucky to have lived in a place where a child with Brooke’s challenges has a dedicated, ABA trained aide in school that allows her to spend most of her time in a typical classroom. And I told her that we continue to focus on consistent and abundant speech therapy and social pragmatics.

But there’s something conspicuously missing from that list.

Above all, we have worked as hard as we could to bring together everyone who works with our girl. Since day one, we have approached every aspect of our daughter’s education and support system as a TEAM.

Private therapists are included on public school communications. Brooke’s neuropsych contributes to the creation of her IEP. Her aide is made aware of any changes to her meds, her diet, her sleep or anything else that may effect her during the day. We encourage her school and private SLPs to compare notes – and they do. And every day we write just as much in her home-school communication book about her time at home as we ask her support staff to write about her time at school.

And finally, with each new beginning – from the start of the year to the recommencement after Christmas break and again as she moves from the school year to summer services, we write a long letter to Brooke’s team. It goes to everyone who will work with her during the year.

Below you will find the one that we sent ahead of this morning – the first day of school. I share it here with the hope that it will be a useful tool to those who are still working on putting together the first pieces of their children’s quilts, or maybe even to help stir some new ideas in those who have been at it for years.

I hope you find it helpful. There’s a lot of information in it, but well, that’s kind of the point.


Team Brooke,

Welcome back everyone! 

D and M, we are thrilled that both of you will be playing such a vital role in Brooke’s education this year! It’s so comforting to have her in such good hands and to know that the transition will be made so much easier by her prior experience with both of you!

So too we are looking forward to working with C. Hopefully we’ll be able to chat soon!

What follows are a few (hopefully helpful) notes for the team on where Brooke is now, some things we are working on and some relatively easily avoided pitfalls.

Above all, we are eager to help ensure a smooth transition and a successful third grade year. As always, we view Brooke’s education as a team effort and as such, are always available to talk or help in any way that we can.  Please don’t ever hesitate – nothing is ever too small, too big or too silly.  (Proof positive – a call last year from camp to tell Luau there was a fuse bead in Brooke’s nose! LOL)

So here goes ..

Where we are currently:

Brooke has made significant progress recently in a number of areas. With increased ability to express herself and identify and share her emotions, she has been able to more deftly manage her fears (long-standing intolerance for babies and a morbid fear of dogs most prominently ‘conquered’ fairly recently) and handle more challenging situations (i.e. restaurants, a crowded mall.)

Another exciting development this summer was that Little Miss conquered the monkey bars! (R, we can’t wait for her to show you and to tell you how ‘You need to exercise to keep your body healthy and strong.” :))

Beginning with the degradation of structure at the end of the school year and then again at the end of ESY, Brooke has been scripting and stimming INTENSIVELY. This is a yearly phenomenon – the transition time and lack of predictability / structure take their toll. As her anxiety goes up, so does her need to create sameness in her world. She is therefore scripting extensively – a lot of Elmo’s World, Godspell (a favorite movie) and random stuff from favorite YouTube videos (the ‘No No Baby’ is a current favorite perseveration), books and made up scripts. You’ll likely begin to recognize her scripts as such fairly quickly. For example, if you ask her if she’s OK, she’ll answer, “Just a little sinus trouble; ignore it.” Once in a blue moon it’s contextually appropriate. Either way, it’s a quote from Bert on Sesame Street. Another to note is “You must think I’m stupid” from Charlie Brown. We’ve been trying to extinguish that one for obvious reasons, but it has proven to be a challenge. 

The stimming manifests itself in a number of ways. The two most notable are vocalization (a squealy hum) and, unfortunately, picking at her skin. You will notice that she has a number of scabs all over her body and will likely often find her bleeding from one of them. In her backpack you will find a zip-loc full of band-aids for these incidences. The actual behavior can be hard to catch. She knows well that picking is not expected and has gotten pretty sneaky. For this reason, it’s important to keep her hands pre-emptively busy. Also in her backpack, please find a fidget and two scraps of fabric. Letting her pull the threads from the fabric can sometimes do the trick when all else fails. 

Things we are working on / areas of focus:

Above and beyond all else, we are working on Social Pragamatics. As many of you know (Hi, B!) Brooke has been in some version of Social Prags Group for four years now and responds extremely well to the language of Social Thinking. She is very familiar with terms like expected vs. unexpected behavior, whopping topic changes, glitches vs. catastrophes, friend files, etc. 

Brooke is a social creature. She loves the company of other people, is eager to make connections and really wants to be a part of the action. It’s therefore heartbreaking to see her stumble through play bids or lose steam after a two sentence volley. This is probably the biggest focus for us at home.

One specific area of challenge is approaching kids at play and asking to join in. The language that has been used with some success is ‘Hi. What are you (or you guys) doing? Can I play too?’ She has been working hard with her private SLP (S, cc’d here) on strategies for assessing the situation and deciding the best plan for joining in. 

Emotional identification (both self and others) and expression. Brooke has been working on this round the clock this year. This has been a HUGE part of unlocking her ability to communicate, understanding social construct and both building and comprehending narrative. She has been making incredible progress! Recently she has begun to identify and share her emotions with us. Sad, scared, happy, excited and mad are the ones she uses the most, sometimes melding / confusing them, but at least using them as catch-alls for positive or negative feelings. 

Math. Brooke ended the year behind grade level in math. Just a reminder that as per her IEP, she should begin working with the math specialist immediately.

Swinging. Brooke has been working on learning to swing independently for years. It can be tough to find the opportunity to work on this, but while the weather is nice it can serve as a sensory break!

Keeping the scripting to a minimum. (See above) – She is receptive to ‘No more scripty talk for now, we’re going to …. as long as there is redirection. If we shut her down without giving her an alternative, she’s lost.

Transitions. While she usually does fairly well with transitions, they have been particularly tough for her lately (again we assume this is attributable to the anxiety around the lack of structure). Advance warning of a transition and a short countdown tend to help mitigate her difficulty moving from one activity to the next.

Things to look out for:

As many of you know, Brooke tends to fall into Patterns with people immediately. She will expect the same greeting day-to-day or seek the same dialogue or conversation she’d had with someone before. While there’s comfort in the routines, they tend to be a barrier to forming real relationships, particularly with her peers. They tend to be confused / put off by her expectations that they will play along. It’s important to pre-prompt her to greet people differently. We sometimes ‘practice’ what we will say when we see someone in order to avoid the ruts.

Picking at skin. See above.

Inappropriate hugging. Brooke is a hugger, which is wonderful, but she’s taken to hugging everyone lately. Earlier this summer, we met a girl on our street. Brooke asked her name, said “It’s nice to meet you” and then curled right into her for a hug. It seems to have tapered off, but we’d ask you to keep an eye on it as it’s obviously not a great way to endear oneself to third graders.

Blood sugar drops. If she gets particularly irritable, the answer is often hunger. We’ll send plenty of snacks just in case. (Overheating can have the same effect, but she is better at recognizing it. She will say, “I need to cool down.”)

Grabbing her without warning (including by the hand). This has gotten MUCH better over the year, but still remains difficult for her with new people.

Fire Alarms. Last year, P did a great job of ensuring that Brooke was prepped for the fire drills and that her team had plenty of warning to help her prepare. Thanks to the prep and fabulous team work, she got through it without a meltdown. This was HUGE as the fire alarm had been a TREMENDOUS source of anxiety for over a year before that. It’s vital that she have some warning. 

Medications: Brooke takes a small dose of Celexa for anxiety and Metadate for attention deficit.

Above all –

Above all, we’re incredibly proud of her. She’s worked hard this summer and despite the seasonal regression, we have no doubt that those of you who have worked with her before will see how many of the pieces of your and her collective hard work over the years have begun to come together. 

We are thrilled to have this incredible team working with our girl.

Thanks so much for taking the time to read this! Looking forward to a great year. 

Warmly, 

Jess and Luau
Yes, we expect a lot from those who work with our girl. And we hope that they have come to expect just as much from us.
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Ed note: As always, I’d love to hear from YOU! Parents, please share what YOU do to help ensure a smooth transition for YOUR little ones! And to all of those angels who work with our kids, I’d be grateful if you’d let us know what you have found most helpful. And of course, I’d love to hear from those on the spectrum. Your perspective is invaluable!
Thank you!

30 thoughts on “team brooke

  1. Love, love, love this! This is exactly what I try to get the families I work with to write for their kids. Is it okay to share this with them as a model?

  2. Love this Jess we do the same thing every year but I attach my letter to a bag of fortune cookies along with a little tag that says, “We are so FORTUNEate to have you on our team!” Teachers are human and I find doing these type of tiny little extra gestures really help. Yes I expect a lot of them, but this lets them know that I appreciate it! today was the beginning of the second week of school for us and we brought in tiny banana bread loafs that I made to everyone on my son’s team. The tag said, “We know all to well that getting back into the swing of things can be Bananas. Thanks for being so patient and helping my little monkey a bunch!” Call it corny, call it bribery call it whatever you want but it works. Over the summer Jay’s teacher from last year invited him over for lunch because she had a feeling he might be upset about not seeing her any more. Then she came by our house several times just to say hi. Even better, on her own she came into our first meeting with Jay’s new teacher to make sure that he was okay and that the new teacher understood just how wonderful my boy was. A lot of teachers see an IEP and well, they will do just what is required of them. I feel blessed that we have gotten these wonderful beings and i will do whatever it takes to let them know just how special they are!

  3. thank you so much for sharing this!! we’re 2 and a half days into my boy starting kindergarten and i’ve mostly been going with the flow and trusting that everything will fall into place. the school knew me back in April (because i kept calling and pestering them about getting my boy set up with the help that he needs). we’ve managed a pre-IEP meeting to get him through the first few weeks, giving his teacher a heads up on signs that he’s having trouble coping, suggestions on how to calm him down…so far it seems like he will have a really nice “team” of people at the school to help him and that’s so encouraging.

    i plan on sharing this note with my husband and hopefully we can put something like this together for next year.

    the boy has been doing well so far. a little on edge at home but keeping it together during school. we’ll see how he does this week. the anxiety usually accumulates before he fully adjusts to the changes.

  4. I have been fortunate that I have consistently witnessed what I know as Brooke’s leaps and bounds. That was, as usual, a wonderful way to let the team in on what they needed to know in order to be as effective as possible. I wish Brooke a happy and successful third grade year and can’t wait to see the pictures of Katie and Brooke’s first day of school, 2011! It still feels like it should be your first day of third grade. Where has it gone?

    Love you,
    Mom

  5. This is EXCELLENT! Thanks so much for sharing. I do something similar but probably could have provided more detail. Now I am inspired! Thanks for sharing this!

  6. We meet with our team about a week before school starts and go over EVERYTHING. Our team has grown so large that we have to meet in a different room. Lucky for us the school welcomes all our new additions. We also go over how every person in the building knows how to speak with Cole, ie not to tell him to act like a second grader because he has no idea what that means. We also set up a time to bring him into his classroom, meet his teacher, see his seat and go over what a typical day will be like. For two years this seems to be the way to do it for us and again we are lucky our school and team is willing to give us so much time.

  7. Thank you for posting this. My son (9) was finally (after a long battle with getting no help from his old pediatrician) diagnosed this past spring with severe ADHD and on the spectrum along with other issues. We have been working with his school to get him all the proper help he needs, but there are still roadblocks. We will be having our first meeting for this school year (school starts in August here) this week and what you posted will help me in helping him get his team a little more on board with what he needs. Thanks again for posting this.

  8. What an incredible mom you are!!! She reminds me so much of my older son when he was 8…he was in a school for Autism though as his behaviors were so out of control. Unfortunately his district school is horrible when it comes to accomidations and I was just fed up with fighting so I homeschooled him for 5 years with the RDI program. He is recovered, back in district school with peers ( Principal said, “He has Autism?”…because lets face it I made a name for myself plopping a 7th grader into a school when he had not gone for 5 years all the while saying, he’ll be fine…he does not need any accomidations) ..for both my kids …. to work on those developmental milestones that will help all that skill training ( Experience learning vs task learning) helped them to return to understand the WHY’s of the social interactions!!
    Kathy

  9. Any tips from you or other readers on how to create this kind of atmosphere in a place where it not only doesn’t exist, but where one is made to feel like a “helicopter” parent for providing that level of detailed information AND expecting it in return? Our district is so far from what your experience is; I know we are not alone. How can we foster change?

    • You are in a difficult and incredibly frustrating situation. There are no easy answers, and unfortunately change takes time that kids don’t have. A couple of suggestions:
      1. Talk to the other parents.
      2. When you find like-minded parents, come up with a list of concerns, suggestions, demands.
      3. Prioritize for what you think is most important.
      4. Then prioritize by what you think is most easily achievable.
      Take a multi-prong approach now and work with both administration and individual teachers.
      A) figure out which teacher(s) are most workable – in essence, you will train that teacher. Oftentimes new teachers will follow whatever has been the custom. Someone new is usually more willing to try something new
      B) approach the appropriate administrator as a group. Have a spokes- person who can present your information with as little emotion as possible. Give specific suggestions as to how to improve the quality of education your kids are receiving.

      Also, (because you have so much free time-ha!) get involved with your school’s PTA/PTSA/Parent organization. The organization can be a very valuable ally in trying to effect change

    • we are incredibly lucky to be where we are, but much of that ‘luck’ is owed to the parents who paved the way before us – much as described so well by jill below – and to the continuing work that we put into group advocacy with the district.

      parents in my town established an active sped advisory council (on which i sit on the bd) and a number of autism parents got together a few years back and created a group to help determine best practices and to help advocate en masse for the specific needs of kids on the spectrum. (until late last year i sat on that group’s steering committee as well). both groups meet regularly with the administration and work together to serve our kids.

      however, even with all of that within our district, experiences remain widely varied.

      when we didn’t have what we needed, we insisted. we brought in expert opinions, cited the law and didn’t back down. in years that we didn’t get info before school, we asked for it. again and again and again. when we weren’t offered a chance to come in and see the room and meet the teacher, we explained why it was important and asked when we could come. and, to large degree, we created the team environment that we have simply by acting as if we are one. we send the e-mail to everyone who works with b. we send updates on what we see at home. we constantly praise the hard work of the team and we do it publicly. it’s never a one shot deal.

      by no means do i mean to imply that a) you don’t do these things or b) that these efforts can create what you need overnight or fix systems that simply don’t have resources or value special ed. but over time, they do begin to change the landscape.

      finding other parents is huge. working WITH the administration is vital.

      and i’ll say it until i’m blue in the face —

      this is why it is so desperately important to continue to fight for REAL awareness. not ‘wearing a puzzle pin once a year’ awareness, but the kind of granular understanding of our kids that changes attitudes.

      it’s why i write. it’s why i walk. it’s why i lobby. it’s why i went to harvard school of education to speak to the next generation of teachers and to the white house to speak to THIS generation of lawmakers.

      we can’t rest.

      we won’t.

      not until every child in every zip code in every damn state has exactly what s/he needs to succeed.

      it shouldn’t be this hard.

      love you.

  10. I send what we call The Email to Alex’s team (he just started 2nd grade). The Email does some of what your letter does, but not nearly as detailed. Maybe next year I can incorporate more examples! I had no idea that there was a term for a person quoting his/her favorite movies, tv shows, book dialogue, etc. SCRIPTING! I’ve been treating that all wrong–to the point of getting angry with Alex when, in the middle of a conversation, he veers off in Fairly Oddparent land! Yet again you’ve helped me identify what’s going on and even provided a jumping off point to help Alex. I’m actually all teary-eyed now. Thanks, Jess. So very much.

  11. You are amazing!! I Thanks you so much for the idea of a letter to the school.. I think it’s a great way to get the year started on the right foot!

  12. Thank you, Jess! This is incredibly helpful. We have just left the familiar cocoon of our inclusion preschool and moved into a more typical (though still co-taught/inclusion) elementary school. But everyone is new to our son, and thus his quirks are new to them. Your letter has inspired me to prepare an update ASAP to make sure we’re on the same page. I will be “borrowing” many of your concepts!

  13. Wrote a similar letter to my son’s new team this morning. While his preschool team accepted it warmly, his bew team looked at me like I had three heads. You have created an incredible communication loop for your daughter, and you never cease to impress me with your dedication to your girls’ success.

  14. I make sure they know I will be an involved parent. It didn’t hit me until a couple of days before school (K) started, that no one on his team this year knew him yet. I sent a letter to the aides, but it was not very organized. I’ll definitely revamp for next year. Just this morning, a week into school, I sent a letter to his case manager requesting a schedule for services, daily notes from the specialists,and a meeting in early October with the team to see how he has settled in. We’ll see! I’m super nice in my notes, so it shouldn’t come off as pushy, and if it does-oh well.

  15. Thank you so much for this. The entire entry.

    I hadn’t looked through your list of resources, so thank you for the link to Michelle Garcia Winner’s web page. We started K with a private OT this spring and she does a lot with Social Thinking. It has been very helpful. The OT gave me Winner’s Politically Incorrect….” book to read. Wow was that interesting. I then borrowed the Inside Out book. This feels like the piece we’ve been missing with K.

    And thank you for the letter you send to your team. I haven’t sent one to our team yet. I was worried that if it was too detailed eyes might glaze over. But, really, it’s all information they need to know.

    This morning’s drop off was not good. I don’t feel like I prepared K very well and I know I missed some opportunities to use the Social Thinking methods. Fortunately we see K OT tomorrow and I can get some help from them.

    • Kelly,
      What I suggest to my parents is to make a little book. Put a picture of your child on the front (graphic reminder of who this is all about!) Use each page for a different topic. Yes, it’s time consuming, but this way there is something that can easily be shared with a new staff person or sub. Include pictures of specific items, etc.

      I also have my parents bring a picture of their child to all meetings so that he/she can be in the room. Can also help to re-direct if emotions run too high.

  16. This is great! In years past we’ve made a little “brochure” about our daughter with her mug shot on the front. I’ve gotten lazy about doing this the past couple years – primarily because her school is year-round and her team knows her so well. But you’ve lit a fire in me, Jess, if only for the purpose of re-stating our vision, expectations and gratitude.

  17. I’m in awe but not the least bit surprised – I’ve always taken a stab at this sort of thing year after year, but your letter is so much more organized, specific, and complete. I would definitely have used this as an outline for a similar letter when Nigel was younger, and I highly recommend that everyone with kids under 15 do so! Once you hit the transition age, things change a bit, but I still do an information sheet for all of Nigel’s new teachers outlining his strengths and weaknesses. I think it makes a big difference. Wishing you all the best for the new school year! xo

  18. What you just write is so touching. I have a 9 month old baby who drives me crazy all day and ur post made me wonder, maybe im just not listening and thats what shes trying to tell me! thanks 🙂

  19. This is awesome, and I will be doing a letter now myself! I like to give the IEP goals to my girl’s school, but sometimes I worry they won’t really read through all *27* (eek) goals! And I LOVE being able to brag about her summer accomplishments and reiterate our gratitude!!

    Jess- is it possible for me to send you a private message about your upcoming trip to see Godspell? Not sure how to do that not-publicly?

    thanks 🙂
    Aimee

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