August 2012

I am very excited to announce the upcoming release of my first book, I Am An Autism Parent, this October! This is what I’ve been working on while I’ve been largely absent from here and the blogosphere these past few months.

I wrote I Am An Autism Parent primarily for parents who are either just receiving an autism diagnosis for their child or who are in the process of seeking one. However, our rollercoaster of autism parenting is an ongoing one no matter how long we’ve been on this road, so I think this book will have a lot to offer everyone.

It is a very different autism book from most anything I’ve seen, and it is certainly a departure from the how-to books many of us have read. It is about the emotional journey of going from diagnosis to embracing your identity as an autism parent, wherever you happen to be on that path.

I wrote it as an open letter to autism parents because I want you most of all to know, no matter how you feel right now, that you can do this. We face countless challenges, but from them arise so much beauty and wonder. Our kids are awesome, and they have so much to teach us. As we grow in skill and wisdom as parents, our ability to help them shine will grow as well. This book is about discovering how to get there.

There is a seemingly unending stream of negative and discouraging messages about autism, and I wanted to tell a different story. In part I wrote I Am An Autism Parent because I want to tell a story that is both honest and encouraging. I know as a new autism parent that I wanted someone to help me see things in a real and positive light, support me, help me know I’m not alone, believe in me, and tell me I can do this. I hope that this is what this book will accomplish.

I Am An Autism Parent is the culmination of what I’ve learned as an autism parent. It’s everything I want to tell a new autism parent. It’s a message I want to share with all of you with whom we share this journey.

And getting this message out to autism parents is so important to me that I will be sharing it with everyone for free.

You can read a short excerpt of it, which I have entitled The Autism Parents Vow, right now. In this excerpt is the vow I wrote to our J-Man and the promises I made to him early on in our journey together. I have read and re-read that vow many, many times, and I still cry every time I read it. The words mean more and more to me as time goes by.

You can get The Autism Parents Vow as a free PDF on my new I Am An Autism Parent web site. I must say that I am really proud of it. The feedback I have already received over the past day or two since the site went live has blown me away. I am so thankful to those people who have shared their responses with me.

The initial version of I Am An Autism Parent will be released in October as a free PDF designed specifically for your computer or tablet device. I’m releasing it first to everyone who signs up and says they are interested. When you sign up, you’ll also get a few missions – exercises you can do yourself – and future announcements about this book and other related resources. To sign up, go to the I Am An Autism Parent web site, and enter your e-mail address in the signup form. (It’s free. And don’t worry, I won’t share your e-mail with anyone. Spam is evil.)

Thank you to everyone who has helped me bring this dream to reality, and particularly those who encouraged me to write this book from its very beginnings. I’m excited for you to read it!

So head on over to the I Am An Autism Parent site, download The Autism Parents Vow, and while you’re there, consider signing up to get I Am An Autism Parent before its public release and some other good stuff.

Thank you all for being here, and thanks for being awesome.

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Over the months of summer vacation from school, it’s almost impossible to create the same level of structure and type of environment at home as exists at school. Besides, many of the routines of family life typically aren’t conducive to structure anyway, and whatever routines you do have can easily unravel during the long summer vacation.

But as much as we as parents often look forward to school starting again, the transition from summer and home back to full-time school is almost always a shock to our kids’ systems. This is true regardless of how much they enjoy school and how great their school may be for them. It’s a complete change from what they’ve been doing over the summer months.

Be prepared for regressions in the first weeks of school, even if your child is at the same school with the same teacher and therapists as the previous year. This is perfectly normal. Rarely will these last very long, though. If they do, this could be a sign that your child is struggling with more significant issues in their classroom than simply adjustment.

Here are some techniques you can try to help ease the transition back to school. Every child is different, so start with the ones that work with your child’s strengths.

  • If your child responds well to social stories or stories in general, read them ones about going back to school. Create a story yourself involving pictures of your child’s school and their teachers. You can print them out, add some simple words, and make a little booklet. Don’t worry. It doesn’t have to be Shakespeare. Similarly, you can try YouTube videos that talk about school.
  • Talk about school in your child’s presence using a positive tone, even if your relationship with the school is strained. Kids, even if they have receptive and expressive language challenges, can often pick up on these cues, positive or negative.
  • If you use a visual calendar to help your child know what’s coming up, put some sort of note (special sticker, picture of the school, etc.) on the date when school starts and start checking off the days leading up to it. If you do this in your tradition, think of it like a back-to-school Advent calendar.
  • Dial back your own personal obligations the week before school starts and the first week of school. Clear as much as you can off your calendar that doesn’t involve family responsibilities. You’ll want to be able to devote as much of your energy and attention as possible to the transition. This will also help you be as calm a presence as you can for your child.
  • Start adjusting in small increments your morning and nighttime routines to align with your school’s schedule a week or two before school begins. Figure out when you need to start the morning routine so you’re ready to leave for school without feeling too harried. Prepare as much as you can (e.g., pack school lunch) the night before.
  • Reach out to your child’s teacher and school therapists and discuss ideas for a good transition. Get them up to speed on any challenges your child is currently having, and discuss strategies on making the first days of school easier on everyone.
  • Give your child lots of leeway with ‘ritualistic’ behaviors during this transition. For example, my son lines up a couple dozen objects on the bathroom counter after his shower in the morning. He counts them as he goes. This whole process takes 10 minutes, but we account for it in our schedule because it helps him center himself within the morning routine. Expect your child to cling more strongly to these types of activities during major transitions.
  • If your child benefits from a ‘sensory diet’ (a regular routine of any sensory input that calms them), plan to increase it during this transition.
  • Keep a log of things like changes in behavior, sleep, diet, etc. and anything noteworthy that happened each day at least a week before and after school begins. If your child is having a hard time, these logs can help you look for patterns. It doesn’t have to be elaborate. I’ve found that a paragraph or two is generally sufficient.
  • Don’t push your child toward new skills or goals until they get settled into school. For example, if you’re working on getting your child to look people in the eyes more, don’t push that when school starts. Your goal the first week of school is just to get back into the routine and see where things are.

It may take some planning and effort, but with some preparation and flexibility you can greatly increase the likelihood that going back to school will be a positive experience for everyone.

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Operation Dining Time – Part Two

by Tim on August 7, 2012

[ I know it’s been eons since we last posted. I’ve been devoting almost all my free time to a new project I’m really excited about. Details are coming soon, but the first phase of this project involves the release of my new book! In the meantime, here’s the continuation of our Operation Dining Time posts and our rip-roaring success of helping our J-Man become a less picky eater! ]

For an introduction and the initial steps we took to start this process, go back and read Mary’s first post about Operation Dining Time (ODT). You can also read a general overview that I wrote over on Special-ism.

We set as our shoot-for-the-moon goal 26 new foods by June 30, the end of the school year. The new foods marathon (where 26 came from) was suggested by the teachers as a marketing ploy since I’ve run a couple of marathons now. :-) This gave us a period of about five weeks to do what seemed unthinkable. When we set the goal, he’d only tried a small number of new foods.

Remember, we started with just six foods, the same six he’d eaten for years. Since we started ODT, he’d only added a few more to that point. Shooting for 26 more on top of that really did feel like we were aiming for the moon.

But one thing we’ve learned over the years is that when you aim ‘impossibly’ high, our kids can often go even higher.

The amazing news is that we finished the marathon new foods goal with plenty of time to spare. We had 16 days left when we hit 26 foods! So, we just kept going. By the June 30 date, he’d tried by our count 44 new foods! It may even have been more than that, but we sorta lost track!

Let’s all let that sink in a minute. This child ate six foods total up until we started making these changes. He’d been stuck in this diet pattern for years.

We are as mind-blown as anyone. It really does feel like a miracle.

This doesn’t mean he loved all these foods, but he did try them. We didn’t expect him to enjoy everything he tried – who does? – but his willingness to experiment and courage to try were the most important things. We believe that with this so much more becomes possible.

The main part of the diet change for us was getting over the inertia at the beginning. Autism defenses don’t give up easily. Even if your child shows interest in new foods and a genuine desire to eat them, these habitual patterns are hard for them to get past. These patterns were established and took root over a period of months and years. Think of it like trying to uproot a tree that’s been in one place that long. Not easy.

The key is to find the most motivating and positive ways to chip away at the mountain you want to get beyond. We offered J a bite of new food followed by a bite of one of his old, preferred foods. Think of these motivations like clearing paths in overgrowth for them to walk on more easily when trying to find a way around these defenses. You have to be consistent, though. Offer the new food but don’t give the preferred reward food until your child eats the new food.

We still have to use this approach. For instance, we recently asked him to eat a few bites of corn and peas (not mixed, of course!), which at first he was not interested in. We said if he just tried a bite of either one, he could have a bite of something he liked. For an entire meal, he rejected this. So, we ended up skipping that meal entirely. This was at lunch, and he’d had a good breakfast so no harm would come from skipping lunch. At his afternoon snack, he still resisted for a short while, but eventually his interest in eating something overrode his defenses. He not only tried them but ate the entire portion of both the corn and peas. He got his preferred foods, and then all was well.

Your child may legitimately not like the new food, of course. We set the rule that he at least has to try it a few times before rejecting it as a food he doesn’t like. We note his reaction. We’re pretty good about reading his expressions, especially because he’s minimally verbal.

Interestingly, the end result so far is that he’s more or less made himself mostly vegetarian. Actually except for some cheese, he’s pretty close to vegan. He hasn’t much cared for any of the meats. We aren’t pushing any specific diet on him since our goal has been to expose him to as much variety as possible, but if this is ultimately his choice, we’ll be happy to honor it.

We tend to introduce foods we think he’ll like based on what he’s eaten before and what foods he prefers. Examples: Apples because he likes applesauce, and they’re crunchy like the crunchy foods he likes. He will go through a bag of apples every few days now! Cheese toast because he likes buttered toast. Cheese with a saltier flavor (mozzarella string cheese) because he likes salty snacks, though he hasn’t much cared for cheese on its own. And so on. We’ll occasionally introduce an ‘out there’ food that’s pretty far off the path when compared to other foods he’s tried simply to see what will happen.

Inertia and friction have a couple of lessons here. With inertia, it’s hard to get something moving, but once you do it builds momentum and gets harder and harder to stop. With friction, it takes more pushing to get a stationary object going, but friction actually decreases as an object starts moving. (See, my college degree finally is getting some use!)

He did initially lose quite a bit of weight. At first this was because of his resistance to eating what we offered. Even when he started eating much more, he kept losing for a while. Depending on your child’s current diet, this strikes me as a likely thing to happen.

J was eating tons of snack carbohydrates before, and any of you who have tried to diet likely know that carbs also make you retain water, up to three times as much water as the carbs you take in. He lost over the first three weeks or so about 5 pounds, or a little under 10% of his body weight. But now he eats a lot and has gained all that weight back plus a smidge, except now it’s with a diet better than most people we know!

The magic moment happened at his class’s end of school year party. There he was sitting at the table with his classmates, eating a cupcake just like they all were. It’s hard to express just how miraculous this feels. It was all so perfect.

Every time we’ve gone somewhere, we’ve either had to bring his snacks to eat or just accept he won’t sit at the table and eat what the other kids are. To many this would seem like a little thing. Most parents probably never notice, but this is one of the hard fought victories autism parents and their children win that they never forget.

For the first time ever, we added a fair amount of money to his school lunch account. When whatever is being served that day contains foods he likes (or sorta likes), he can get lunch with the other students. This is such an enormous victory that I can’t even begin to tell you, though many of you already understand. I honestly wasn’t sure this day would ever come, but it has.

People have asked us whether he has experienced any physiological, emotional, behavioral, communication, or learning changes under the new diet.

The short answer is, not really. I admit that this is a bit of a disappointment. It wasn’t the main reason we did all this, but we were hoping for some additional benefits along these lines.

Physiologically, his digestion has overall seemed somewhat better, though recently it seems to be getting dodgy again. For a while he seemed calmer, but that was only temporary. He seems about as fidgety and sensory seeking as ever.

He was already having a good school year so it would be hard to discern whether any improvements were diet-related or not. I imagine it had to help some. Nothing I’d call a quantum leap at school or anything, though. Same with communication – he’s still improving gradually but surely.

Like I said, while we hoped for additional benefits, that really wasn’t why we did it. We were concerned about his long-term eating and health habits. We knew that habits get harder and harder to change as kids get older and that teachers in higher grades are going to be much less likely to participate in this kind of program than are elementary school teachers. Mostly, it was simply time.

You always hope some other obstacles will break loose for him and bring about more exciting changes. Such wishing is perfectly normal. But our successes here will translate into others as yet unknown, and we have much now to build from.

It is wonderful to sit at the kitchen table with him in the morning, me with my cereal and J with his apple slices, grapes, pears, carrots, or whatever we give him that morning, and enjoy breakfast with him. These are the victories you remember, the moments you cherish, and the milestones that make all the difference as you continue along this journey.

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