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.
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.
Jess and Luau