4.15.2013

An Intense Ten Days

It's been a while since I did a laundry-listing post. But the last ten days have been so overwhelming, in terms of emotional intensity (I cried a lot, OK?) and events, that I'm just going to have to do that in order for this site to be a functional journal. Which it's supposed to be. And isn't, not lately. I'm also not meaning to be a whiny git, because I've had my full share of whiny parent gits lately and I'd rather not be in their company. But I do want to get all this down, even in raw form. So I can look back and learn, and try to do better.

Last weekend was the big fundraiser for Leo's school. It was a huge deal, Seymour's parents came down and stayed with us, Sullivan and Emily and partners came (and met for the first time IRL, which was nifty). However I am a dolt and had the times wrong, so we were an hour late and missed the auction and most of the non-stuck-at-a-table socializing. Which I wasn't interested in [read: am terrified of] doing on a large scale but had hoped to do with the rare combination of people present. So, bummer that. But the school met its goal, Jen was a gracious host and did lots of impressive impromptu Presenting, and we also got a fabulous new director, best possible choice to replace the wonderful current director. My hope is that the wonderfulness continues and that the school continues to be the place Leo needs it to be once he's of age for the Adult program.

My laptop shattered the following day. I'm sure it was a kid, knocking it off a surface. I have no evidence or leads, however, so I didn't even bother asking, as we have AppleCare and the ability to get it fixed. Our house runs at a constant emotional fever pitch, I didn't see the point in whipping things up even further. But I spent the entirety of last week gritting my teeth, using the mothballed laptop we've planned to turn into Mali's dedicated Minecraft server because she won't notice it's no good for anything else, and which is so slow that I had to cut-and-paste all browser-based writing or correspondence from TextEdit because of the ten-second lag between typing and letters appearing. I don't know about you, but I'm a browser jockey, with several windows and apps going at once. So that was counter-productive and frustrating but temporary and I'm typing on my Precious again as of last night (clasps laptop to chest).

Leo had a rough ten days, is still having a rough time. I don't know why. He's getting bigger, maturing, possibly coming up on puberty, probably getting frustrated with the gap between his needs and comprehension, and his ability to express those things combined with our not-always-perfect ability to interpret and act on them. His frustration has been manifesting in ways I'm glad tend to be directed at me as his primary communications stop gap, and not at his sisters, not unless they are assaulting his hearing or triggering his sensitive emotions. But it's manifesting in ways we need to be very careful to help him redirect and learn to control for his own social and participation-in-society well being. And in ways I honestly hate for Seymour's parents to see, because those behaviors make it difficult for them to focus on Leo himself and how well he's doing in so many other ways, like his communication. (Though they were constantly reaching out to him during their stay, which was sweet. Not everyone tries with Leo.)

The irony there being that Leo's doing much better in his new home program. I've not written about this much yet, I think. He started a new home program in February thanks to the new California autism insurance mandate. The problem was, February is just when everything was at its hardest for him. Winter is usually a behavioral rough time, plus he's not been himself since seizure in December. So having a team of new people placing demands on him during the afternoon witching hours has been ... a challenge. (And, honestly, a source of near-heart-stopping stress, as are any circumstances in which Leo is displeased and dysregulated.) Even though he's working with lovely people. And now Leo and those lovely people are starting to get each other's rhythms, starting to have synchrony, starting to get stuff done. So, whew that.

But we still don't really have an explanation for Leo's seizure and anaphylactic shock. I got the last of the reports -- from his allergist -- while I was sitting in the Apple Store parking lot on Tuesday morning, fretting over Leo's dysregulated behaviors and reviewing IEP documents through the shattered laptop screen (his IEP was the next day). It took a long time to get those final reports back as Leo turned out to not be a huge fan of the allergy skin prick tests, so he needed to get blood work done instead. And while Leo has learned to tolerate shots and blood draws fairly well, it took three separate attempts at tourniquets and sticks this last time (Friday AM ten days ago). He was not pleased, neither was I, but it wasn't anyone's fault -- his veins have become elusive. Anyhow, more stress. All round. Poor dude. He was so patient.

The allergist's final call was to let us know that Leo has ... no allergies. To any of the environmental agents or foods for which he was tested. (He does still react to Amoxicillin.) The neurologist had no answers either. No answers. Ironically, the medication Leo takes lowers his seizure threshold, but he was off that medication from October to February, and his seizure and anaphylactic shock episode and hospitalization and almost-dying happened on December 27th. So we just need to keep the Epi-Pens around, and make sure we're up on on seizure safety. And keep living our lives, was the recommendation from both fronts. I'm trying to, but have not been able to sleep through the night since December (ironically, Leo's sleep has gotten much more consistent).

The IEP went well, from a logistical perspective. I had several pre-IEP meetings with various team members -- one of which Leo participated in as well -- so the official IEP meeting itself was well-oiled and hiccup-free, and all services are remaining not just intact but consistent. And his SLP is very serious about probing the UNITY AAC system with him, for scaffolding his speech because Leo has so much to say but expressing it is not easy for him. But it was difficult, really difficult to hear and have it go on his official record that Leo had been on track for independence and goal-meeting all year until his seizure, at which point he regressed and everything had to be recalibrated for sensory accommodation and regulation. I know he'll get back on track. But it just doesn't seem fair to him, when learning and being in school was already taking everything he had.

It was also instructive to learn from his IEP team that that the kind of language we use at home when Leo's behaviors are not just disruptive but potentially dangerous -- a big, loud, firm "NO," to let him know we're serious and emphasize that the dangerous behavior is in a different category than other behaviors -- cannot be used in a classroom full of echolalic students. Nope, not a great idea. They have other strategies, though, all of which are in keeping with our philosophy of respect and understanding behaviors. Feeling lucky about that.

Leo's sisters are having a lot of needs right now, as well. Seymour and I are giving some serious thought to how best to meet those needs, make sure the girls know we're here for them every bit as much as we are for Leo. I may be rethinking my other obligations. I'm needed here. High school is hard. Being a teenager is hard. Third grade is also hard. Being a third child, that is also hard.

Being parents, that is also hard. Which is why I'm glad Seymour and I took off this past weekend for an overnight in San Francisco. (Leo was at camp, the girls stayed with marvelous friends whose kids we will happily mind, on some future date.) We probably talked about the kids instead of each other too much, but hello, we're parents.

The weekend was glorious and so cherished otherwise (photo is the view from our hotel room, which was a gift from my brother). And though I didn't sleep well even without the kids around because my subconscious wouldn't stop worrying about Leo being at camp for the first time after his seizure, few experiences can compare with a weekend in best-city-ever San Francisco with my soul mate. Dim sum breakfast and walks along the playfully lit-up Bay Bridge are very soothing. And soothing is good, for all of us.










4.12.2013

"Is Your Son Really That Difficult?"

[mb] Vertical Blinds 3
Photo © Merrick Brown
at Flickr
That's what the well-meaning blinds salesperson who just left my house asked me, after I told her I was leery of installing vertical blinds in our family room -- mostly because I was worried Leo would love them to pieces, quite literally.

I launched into kind-but-firm on-the-spot advocacy and acceptance mode. I didn't cry (something I might have done in the past) or get strident (something I am still working on). Instead, I smiled to show how much I love my son, and let her know that she was misunderstanding my concerns.

I told her that I wouldn't call my son difficult, but that his autism means he sometimes has difficulty reining in his impulses. So even if we asked him to please not wrap himself up in or set in motion a great big set of swinging, clanking, flapping blinds, he might not be able to resist. He would likely see them, as he does in most doctors' offices, as more fun than any plaything on this planet. And he might pull them all down, in his enthusiasm.

It's not that Leo is difficult -- it's that I know what can be difficult for him. Why would I put him in a difficult situation, when it can be avoided?

But as we also like to give him opportunities to prove himself, we will probably get one tiny trial section of vertical blinds for now. His ever-increasing maturity may mean that blinds-play has become passé. (Also, we have to do something, as all our floors and bookshelves and furniture are getting bleached to hell.)

The salesperson seemed to get it. She nodded, and said that what I told her made sense because "we all make allowances for each other, especially as parents." Indeed.

I wish more people were so easy to reach.

4.08.2013

Using His Words

Seymour's folks were here for the weekend, to attend the big fundraiser for Leo's school, and to watch Iz play soccer. The kids all loved having their grandparents on site, Leo especially -- he greeted them with squeals and giggles, and answered most of their questions (which he is not motivated to do with everyone, trust me). And after they left, he used more language and had the longest conversation he has ever had with us, by far. We need to convince the grandparents to come more often! Here's our exchange:
Leo: "Want to get in the car!"

Us: "Why do you want to get in the car?"

Leo: "Want to go to the airport."

Us: "Why do you want to go to the airport, Leo?"

Leo: "Want to get on an airplane, go to Grammie & Vavo's house."
Us: "Which house do you want to go to? The house with the boat or the house with the pool?"

Leo: "The house with the boat!"
I talked him into going to get some horchata instead, but that's some damn fine language. The kind of language I'm working with his teacher and SLP to try to help him develop, and scaffold, through visual supports and typing.

The kind of language that we'll definitely be celebrating on Wednesday, when we meet for his annual IEP and reformulate and perfect his goals as a well-oiled parent/teacher/SLP/OT team. Cross your fingers that the school district does not have any surprises for Leo, or for us.

4.02.2013

Autism Acceptance Day 2013: "What are you doing to make the world more accepting of autistics?"

Leo grooving on the sandstone at La Jolla Cove
That's what autistic advocate Kassiane Sibley asked today.

So, for those who missed yesterday's Al Jazeera English The Stream Autism Spectrum segment: Ari Ne'eman, Steve Silberman, and I were part of a group discussion on autism rights, acceptance, inclusion, and education. Video below:


...and if you want to continue exploring the themes of the Al Jazeera segment -- rights, acceptance, you can watch and listen to my Autism Parenting and Gratitude Webinar for The Reading Clinic. I also talked about finding role models in the autistic and parent communities, and about parents being kind to themselves so they can be the parent their kid needs. And, oh, a lot more -- the webinar is just a bit more than an hour long.

Also today on BlogHer, I wrote Do the Right Thing: April 2 Is Autism Acceptance Month. Excerpt:
You don't want to be on the wrong side of history, do you? That's a question we're hearing a lot just now. And I think it's a particularly important question to ask yourself today, during Autism Acceptance Day, and throughout April, which is Autism Acceptance Month. It's important for you to accept and then help other people understand that autistic people like my son are your fellow human beings, with your same inalienable rights to live happy and pity-free lives. That whatever their needs and abilities, autistic people are not "less" than other people.
The Autistic Self-Advocacy Network just launched its e-book And Straight on Till Morning: Essays on Autism Acceptance [Kindle Edition]. It contains the work of many wonderful Autistics and allies, including Kassiane Sibley, Zoe Gross, Shain Neumeier, and Lydia Brown, and was edited by Julia Bascom
Rethinking social conventions in light of autism is precisely the goal of another just-published ebook called And Straight On Till Morning: Essays on Autism Acceptance. The third title published by a non-profit group called the Autistic Self-Advocacy Network, it is an anthology of essays about autism written from the inside. Each of the contributors to the book is on the spectrum themselves, the parent of an autistic child, or an ally in the disability rights movement."
I also contributed to autism & apps posts for Parenting.com and Tech in Special Ed, but I talked about those already, on today's previous post.

Since Autism Acceptance Day is just the lead-in to Autism Acceptance Month, here are some AAM projects for you to keep on top of during April 2013.
To quote Victor/Victoria, that is what I have done about it. What are you going to do about it? Let me know, so we can promote your Autism Acceptance Efforts on Thinking Person's Guide to Autism!

What You Need to Know About Apps for Autistic Kids

It's World Autism Acceptance Day! Which I'm going to take on in two parts.

First, let's talk about apps for autistic kids, because Parenting.com just asked me for my recommendations for apps for kids like Leo in general*, Tech In Special Ed just published a guest post by me on apps for older kids, and iAutism has put together a list of nearly 200 Free or discounted apps for World Autism Awareness Day (2013).

Here are my current thoughts on apps that work for Leo and his sisters, on "go-to" apps for autistic kids, and some qualifications on what makes a good app for autistic kids in general.
On our household's favorite apps
My kids really like the new app Kid in Story ($6.99) -- it's a story making app that lets you take pictures of your kids and "greenscreen" them right into a storybook with custom voiceover and whatever backgrounds you choose -- your own photos, included story templates, etc. We've used Kid in Story to help my twelve-year-old autistic son Leo get ready for trips and transitions, and to create memory books of favorite activities like trips to Disneyland. His eight-year-old little sister Mali tends to use Kid in Story to put herself in imaginary Minecraft or Lord of the Rings adventures. Kid in Story also has a free Reader companion app, so we can share the stories with grandparents, cousins, and Leo's therapy team and teacher.
We also love Netflix (Free). The app includes a Just for Kids section, and Leo loves browsing it -- he discovers shows like the new CG animated Thomas the Train series and uncovers old favorites like Dragon Tales. And because the Netflix app includes the graphic logos for each show, my son (who still struggles with reading) can use it independently -- he can watch what he wants to watch when he wants to watch it, and doesn't have to wait for us to queue up the shows he wants on DVD or TiVo.
Most apps by TocaBoca, Duck Duck Moose, Spinlight Studios, and Oceanhouse Media are consistently hits with my kids, because they are not just fun but beautifully and intuitively designed -- my kids can jump right into all their apps and start playing (from their perspective) and learning (from mine).

On apps that appeal to Leo

Anything with an intuitive visual interface, especially those that don't require reading since Leo's not reading fluently yet. He currently loves the sewer alligator game Where's My Water (free), the musical free play app TocaBand ($2.99), and all of Oceanhouse Media's interactive Dr. Seuss books  because they include touch-each-word voiceover and so let him "read" his favorite books independently. And lately, he's been going back to the paper Seuss books and "reading" them out loud thanks to his constant iPad practicing!

On "go-to" apps for autistic kids

There are no "go-to" apps for autistic kids, not really, because the abilities of autistic kids vary so widely -- some are hyperlexic and teach themselves to read at age two, others still struggle with reading as they enter their teens. Some autistic kids are very visually oriented, like my son Leo, others just want deep information on their areas of special interest.

It really depends on what your child wants and needs. That's why my SLP and Autistic collaborators put together our app spreadsheet (http://www.squidalicious.com/2011/01/ipad-apps-for-autism-spreadsheet-of.html), to help guide autistic kids, their parents, autism professionals, and adult Autistics to a selection of apps that we think are valuable and worth their time. And we appreciate feedback!
On what makes an app not just good but great for kids like Leo

Good design, then good content. Good design is what lets Leo use apps independently or with minimal support, and then access the content. So many app developers have good intentions and sometimes even great ideas, but don't understand graphic or interface design. And I'm not saying my son doesn't still play with and enjoy some of those apps. But bad design makes it impossible for Leo to use some of the apps that could benefit him most.

Again, this is why we screen and select apps for our recommended autism apps spreadsheet.

I recommend looking at the iTunes reviews as well. iTunes no longer lets people who have received developer promo codes leave reviews, so you don't have to worry so much about skewed positive ratings.


----

*One blip -- the Parenting.com article has me recommending an app called Look in My Eyes, based on a 2010 article of mine called Leo's iPad Apps for Kids With Autism Starter Kit. I no longer recommend Look in my Eyes -- and it has been taken off our spreadsheet for recommended apps -- because autistic people often find eye contact painful, and unnecessary, and often say "I can look at you, or I can talk to you, but not both." I have since updated the post with the de-recommendation.
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