Joseph and the iPod

For months, we've wanted to get Joseph an iPad, hoping that he could use it as a communication device and also to play games that would help his development. We applied for the Hollyrod Foundation program that was providing free iPads to autistic kids, but we didn't really expect him to be selected. After Christmas and his birthday a week later, I went looking on Craigslist for a used iPod Touch. While it probably wouldn't be quite as useful to him as the iPad because of the smaller size, it will offer him many of the same benefits since it runs most of the same apps.

We bought Joseph an 8GB, 2nd generation iPod Touch. The 2nd generation Touch was the first model with a speaker, so it could be used without headphones. I would have preferred the 16GB model, but decided that if this one works well, then later we'll get him a bigger one and I can inherit his old one. :)

First, I put some Spongebob episodes and a few Pixar films on it for him. We'd been using Kristy's Nano for a while, if we needed him calm and quiet and couldn't find any other way, we would give him the iPod and let him watch Spongebob. We've had mixed success with this. It accomplishes our goal usually, but I know that it's not helping curb the bad behavior. (Fortunately, since going back to school after break, we've had much more success getting him on the school bus without the iPod, which was when we had to use this carrot the most.)

Second, I installed Angry Birds and Angry Birds Seasons (the Lite versions of both). Joseph really likes Angry Birds, and he loves Christmas, so "Christmas Birds', as he calls it, was a big hit. Unfortunately, after I showed him the educational apps I installed for him and the initial novelty wore off, all he wanted to do is watch movies and play Angry Birds. So today I decided that Angry Birds and the Bubble Wrap game needed to come off. So far, he's either not noticed or it's not bothering him. Also, I've put some music on, all with cover art so it can be found without having to read titles. Bob Marley, Hannes Wader, Chopin, Imagination Movers, Yo Gabba Gabba and a few others. I showed him a couple of times how to get to it and play it, but so far he's shown zero interest in listening to the music (which is really surprising).

I've been researching apps for a while. My priority for him is improving his receptive and expressive communication. I've been researching apps for a while now, but most of the ones that look like they'll be useful cost a couple of dollars. We're hoping we can get Kristy's parents to buy Joseph an iTunes gift card to pay for some of these. I'm particularly interested in the apps from Kindergarten.com, most of them are flash-card style apps and they say they're based on the principles of ABA.

I started looking for free apps, going through lists of apps for special needs kids in general, and autistic kids specifically. I found Lite (free) versions of several, some flash-card apps, some spelling apps, a Dr. Seuss storybook app. Most of the Lite apps are frustratingly limited, but good enough to get an idea of which ones are worth buying (because I'd hate to buy an app and then have him not be interested in playing it.) The goal is to have a collection of apps that Joseph can use by himself that will keep him occupied and teach him.

These are all either free, or have Lite versions that are free.

• The Dr. Seuss storybook app is a success, so far. It's going on the list of apps we're going to buy.
• Soundrop isn't exactly educational, but he plays it and doesn't get sucked in the way he did with Angry Birds.
• Doodlebuddy is a good, free drawing app.
• TapToTalk is a free communication app. It's $99 a year to have access to create your own vocabulary for it, which is a very good deal compared to some of the others. He fiddled with it for a few minutes, but has not shown any real interest in it. They've made it available on the iPod/iPhone/iPad, the Nintendo DS and several other devices.
• There is a series of apps called "FirstWords" that I like. They show you a picture of something (a cat for instance) and then you drag Scrabble-tile looking letters into their correct positions to spell the letters. It reads the letters out loud as you position them, and when you complete the word, it says it and the picture spins. It kept him occupied for a little while. I suspect he lost interest because it only had a few different words in the lite version. Whether or not he's learning anything from it, it's at his skill level and he can play it by himself.
• Animal Match looks good, but we've not been successful in getting him to play it by himself yet (just installed it today). It's a memory style card matching game, which he should excel at.
• iColoringBook is another new one we just installed. I'm not sure yet if it's something he's going to be interested in.
• We're hoping to find an app that will let us set up his schedule in the iPod and then it will alert and remind him. Like, he gets on the bus at 8:05, so it should make some noise at 8:00 and show him a picture of the bus. The same with dinner time, teeth-brushing time, bed-time, etc. I saw one in the app store, but there were a lot of complaints about it not working properly and this one was more than 99 cents.

I was concerned about leaving Joseph unsupervised with the iPod, so I asked around for the toughest iPod case available. I had several people tell me that the Otterbox Defender was the best. I ordered one from their website directly, $35 with shipping. I got it today and put it on his iPod. Three hours later, he had torn off the tab that covers the dock connector, and torn another part of the outer silicon case in order to remove it. I really expected a lot more. I am going to call Otterbox customer service, but I suspect my options will be return it for a refund, or have the silicon outer case replaced. Neither will really solve my problem, making Joseph's iPod Joseph-proof, as it will leave us either without a case, or with another silicon case that he can (and will eventually) tear.

He's had the iPod for a week now, and it's not been as revolutionary as I'd hoped, but he's showing interest. I will update again in a couple of weeks and we'll see how things are going then. I suspect that once we're able to buy the full versions of some of these apps that they will really be able to capture his interest.

If you have any apps, free or otherwise, to recommend for a mostly pre-verbal four year old; please leave a comment and tell me about them.

Update on Otterbox: I called customer service and they offered to send a replacement silicon outer case for free and I accepted. He's left the torn case on all week, so hopefully once we replace it he will leave the new one alone.

Insha'Allah

Insha'Allah is Arabic for "If God wills it." In the Qu'ran it says, "And never say of anything, 'I shall do such and such thing tomorrow. Except (with the saying): 'If God wills!'"

Kristy's at he OB/GYN this morning. Last month, she went to the ER with complications from kidney stones. While she was there, they did a pregnancy test that came back positive. It was a big surprise for us. Kristy and I both wanted more kids, but did not feel that we would be able to manage financially. Our apartment is pretty cramped with just two kids.

The elephant in the room, of course, is Autism. We've accepted that Joseph is autistic. It's even somewhat of a comfort, since it explains a lot of the difficulty we have with him. It's a controversial subject, whether autism is a bad thing, or just a different thing. As parents of children with autism, I think that believing that autism is not a bad thing is the only way we can be happy and stay sane. Autism has forced me to be a better father, a better person, it has brought some amazing people into my life, it's given me a new way to define myself and made me a part of a community of amazing parents that I value immensely. I've written a lot about the good that autism has done for me and my family, here, here, here, and here. While I could not possibly love my son any more than I already do, the truth of the matter is I would rather my son was not autistic.

Right now, every child that is born has a 1 in 110 chance of being autistic. Boys, a 1 in 70 chance. The docs at Children's Hospital told me that the sibling of a child with autism's chances of also being autistic are 1 in 12.

A while ago, I mentioned Christopher, the child we lost to a miscarriage before Joseph. What I've wanted most in my life is predictability, stability, security and certainty. I want to know what my kids will be doing next year, or even next month. I want to not worry about where next month's rent money will come from or what we'll do if our car breaks (which is has, right now we're sans automobile). I'd even settle for being able to be reasonably confident about these things. Unfortunately, this is a luxury that I don't get to have.

As vital as the support of our friends and family has been and continues to be, I think that my faith right now is the only thing keeping me sane. I'm learning to be thankful for the blessings that we have, despite the challenges. I'm thankful for the people that have come into our lives in the last 6 months. I'm thankful that we have a place to live, that I have so much family nearby, that my children are so sweet. I'm thankful for the very nice TV we got for free on Craigslist last month because I told the guy Joseph is autistic and it turned out his son is autistic too. I'm thankful that we live in Franklin County and our Board of Developmental Disabilities covers more than any other BDD in the state, and we have so many autism schools and research centers to choose from. I'm thankful that the Goodwill across the street regularly sells clothes up to size 4 at 10 for $2.99 and Joseph is still in size 4. I'm thankful that Maria is doing better in school and that Joseph is talking so much more, even if they both have a long way to go.

I know that God has a plan that we cannot comprehend. I know that whatever happens, it's part of his plan, whether we ever can understand it or not. These blessing that we have, most of them are not attributable to anything that we've done right. An atheist might say they're entirely coincidental. But without them, I can't imagine how we would get by or even have made it this far. I must believe that if God chooses to send us another child, whether they're a boy or a girl, whether they're autistic, ADHD or neurotypical, they are a part of God's plan and he will always provide for us, whether it's with work, government assistance or friends and family. I need to allow myself to feel certainty and security in that.

Happy 4th Birthday, Joseph

I should have started this post earlier, but I didn't.

It's Joseph's fourth birthday today. He came five weeks early. I had been working for a local outsourcing call center for two months, and I was in the process of trying to get them to approve my "paternity" leave. On the 3rd of January, Kristy thought she was in labor and we went to the hospital. They told us that she wasn't, and sent us home. The next morning, we went back and they decided that maybe she was after all. A few hours later, we had an extremely skinny, but otherwise healthy and full-sized baby boy.



Being Joseph's father has been more challenging than I expected. It's forced me to become better than I was, and we're both getting better every day.

A year ago, I felt like Joseph's personality and his level of interaction was very limited. Now, he's talking a bit, we're starting to understand more about his motivations and we're learning how we can help him overcome his challenges. I think if I he was someone else's child and I hadn't seen him for this whole year, he'd be barely recognizable to me.

To Joseph:

My son, you amaze me. Every day, I am proud of your persistence and perseverance. A year ago, you were a blank slate to me, with apparently no more personality than a newborn. Getting to know you and watching you develop as a person since then has been wonderful. Every day I see more evidence that you're totally aware of what's going on around you, and that you understand far more than we had thought you did. I'm both anxious and excited to see what kind of man you become and I can't wait to have a conversation with you and find out what is going on in that lumpy head of yours.

Though sometimes you decide you won't eat your dinner, and sometimes you become frustrated and lash out at us physically, I know that you're an infinitely sweet and caring child who is enthusiastic about discovering everything the whole world has to offer. This is why you smear a whole brand-new tube of toothpaste all over the bathroom sink, or sift through the cat's litter box at your grandmother's. I know that all of this is at least as difficult for you as it is for us, but somehow we will manage together, as a family.

For as long as I can remember, I've had trouble relating to people. I know that is probably going to be a challenge for you as well, probably much more so (though already you seem more popular with your classmates than I can recall being myself). I hope that we can make this mutual challenge into something that will bind us together.

Another Assessment

We've finished Joseph's assessment at Nationwide Children's Hospital Autism Center. Back in the spring, we got on their waiting list, as well as a list to participate in a study at the Nisonger Center at OSU. The Nisonger Center called us fist and brought us in to evaluate Joseph. They diagnosed him with autism, but he would not cooperate with their intelligence tests so he could not participate in their study so they did not complete the assessment. It was a startling experience, even though we'd expected it for months. We told them we were waiting to get into Children's Hospital, and they recommended we stay on the waiting list for a more comprehensive assessment when they got to us.

Anyway, skipping a bunch of bureaucratic crap, Joseph's assessment at Children's took place in two parts. Last Tuesday, we went in with him and Kristy answered questions about him while two psychologists and a speech pathologist observed him while playing. They told us that they agreed with the diagnosis of autism.

During the ADOS, Joseph did something that surprised me. The psychologist brought out a doll, a tub of clay, plates, forks, and candles. He told Joseph that it was the baby's birthday. Joseph opened the clay, made a birthday cake, put the candles in it. He didn't sing 'Happy Birthday' but he waited while the doctor did. Then the doctor asked him what happened next, and he blew out the candles. This demonstrated a level of understanding that I was unaware of. Next, Joseph took the candles out and cut pieces of cake. At first, the doll had the smaller piece and Joseph a larger one, then Joseph switched them, giving himself the smaller and the doll the larger piece. This is pretty amazing, I think.

Yesterday, we went back for more assessments. He was sleepy, the night before he had trouble getting to sleep so we gave him 1.5 mg of melatonin. The psychologist worked through puzzles with Joseph, I think they were to test his intelligence, and this time he did very well (based on the time between the prompting and 'Good job!'). Only a couple he did not complete, and I suspect that was more because he was unwilling rather than unable. She tried asking him to do things verbally, without any physical prompting, asking him to name objects, etc. It was not easy going, we had to experiment with a variety of motivators. The most effective seemed to be bribing him with little bits of broken up candy cane. Toward the end though, he was not interested in anything we could offer him. He was exhausted and was done working.

In three weeks, I'll be meeting with them again to hear the results of their assessments, then with an autism resource coordinator who will help me make sure Joseph is getting all the services he needs.

None of this is huge news, more of the same. Of course, I'll update with the results of the assessment when we get them.

Our First Autism Christmas

I don't recall the details of how we made it through Christmas last year. I'm not even sure at whose house we celebrated it with the extended Harris family. Last year we were just starting to figure out that Joseph was different. This year, as I explained before, was very different (has been, I should say, since Christmas is not over yet).

In case you missed it, Joseph is super-freakin' excited about Christmas. He's been singing Jingle Bells and shouting about Christmas trees and telling people Merry Christmas for weeks now.

This morning, I woke up shortly after 8AM. I could hear Joseph in his room, quietly chattering to himself like he does when he's in his room awake and his sister is asleep. I took a shower and woke Kristy and we readied cameras to record the present opening. I opened their door and let Joseph out, woke Maria who was still sleeping and we all went downstairs.

The kids opened their presents, and everything was as it should be. I made breakfast, they both took maybe two bites and abandoned their pancakes. But that's ok. We had some trouble with our dryer, so that delayed our departure for my parents' house. When eventually my jeans were dry, we packed up the kids and gifts for the extended family and headed for Plain City.

At mom and dad's, things started off as usual. Joseph ran around like crazy, Maria played with her cousins. Joseph found the Christmas tree fairly quickly, and it didn't take him long to decide that all the presents were for him. We've been trying to not underestimate his ability to understand what we're saying to him, because he's surprised us so much recently, so we explained that not all the presents were for him, and that he needed to wait for everyone else to arrive. That wasn't received well, you could say.

We tried to redirect him with his new toy, a Leapster. He was happy to hold it, but every time we turned it on, he let out a scream and turned it off again. Kristy tried to lay down with him to get him to take a nap, but he just laid there awake. Eventually, his cousin Celia showed up. She took him out to the mud-room and sat with him. She came back a little later and he was asleep.

When it was time for dinner, we tried to wake him but we were entirely unable to rouse him. When dinner was done, we tried to wake him for presents and he was still quite unconscious. We put him on the floor in the corner of the very loud room filled with 23 people, as everyone opened their gifts. And still he slept. We saved his presents for him to open at home tomorrow. After all the gifts were done, I sat next to him and shook him a little. He didn't respond. I touched his face and he pushed my hand away and then rolled over.

When it was time to go home, then he woke up. He cried. Celia carried him out to the car. I expected that, as usual, he would calm down once I put on some music and we got on the road. But as we pulled out of the driveway, he screamed louder, reaching back towards the back window and crying, "Christmas!" He wiggled out of his car seat, and climbed into the back window. We tried to calm him, telling that we still had his presents. We gave him a wrapper package and a little rubber squeeze toy. That helped calm him enough to get him back in his car seat. He cried for a little while longer, but eventually he put his blanket over his head and calmed down. By the time we got home, he was fine. He opened the presents from grandma and grandpa's, watched TV for a while, the only after-effect was that he stayed awake until at least 12:30AM.

Over the last month or two, I've seen lots of stuff about how to deal with holidays when you have an autistic child. And I didn't read any of it. I thought I didn't need to. I thought it would be as uneventful as last year. Wow, was I wrong! The progress Joseph has made, and the resulting understanding he now has of Christmas and other things going on around him, led to this profound disappointment he felt when he woke up and realized that he was leaving his grandparents' house and he had missed out on most of the celebration there. This made it even more difficult for me than his usual meltdowns over petty, insignificant things.

I know, this sounds like a pretty awful experience. I'm glossing over the positive experiences, for the most part. Though we still have the Smith family Christmas tomorrow, when his maternal grandparents will visit us, I would say that Christmas has in general been a positive experience today. Though not as much as it should have been, and possibly could have been had I bothered to be more prepared and foresee these complications.

In any case, we've learned something new about our son and how we need to be prepared to help him.

Merry Christmas, everyone. :)

Visiting Santa

Joseph's enthusiasm for Christmas continues to grow. At OT the other day, he strung some beads on a pipe-cleaner and made it into a loop, then held it up to his therapist and said, "Christmas tree!" His teacher at school emailed us the other day, telling us that anything Santa related has supplanted Gogurt as his number one motivator in the classroom.

Saturday afternoon, after an exceptionally stressful morning, we took the kids to see Santa for the first time. Joseph never really seemed to show an interest before this year, so I thought that since Christmas is such a big deal for him this year that going to see Santa was important.

We took them into the store, a garden center, without telling them why we were there. We got them in line, and Joseph still couldn't see. He calmly munched on a cookie for a few minutes, but as soon as the man in front of him moved out of the way, Joseph exclaimed, "Santa!" and started trying to get away from us. He continued to pull on Kristy's arm until the kid before him had finished and we let him go. He jumped on Santa's lap, and sat there beaming. Santa gave him a little bag with a coloring page and a package of hot chocolate.

Thinking about this time last year, Joseph almost never spoke. He usually seemed either confused or oblivious to what was going on around him. He had a grasp on the concept of gift-opening, but that was about the extent of it.  In November last year, we had his hearing tested and we were just starting to consider that he might be autistic.

I didn't start writing this story with a point in mind, I just thought it was a cute story and I needed to post this week. I suppose the point is the progress Joseph has made this year. With all the horrendous suck that 2010 has brought us, Joseph is doing so much better and is making so much progress and I can't wait to see what he's like next Christmas.

Christmas Gifts

In order to avoid Joseph receiving gifts that he won't appreciate (because any parent of an autistic child will tell you, its tricky predicting what they will or won't play with) I set up an Amazon wish list to help family and friends choose appropriate gifts for him. There are lots of sensory items, some of which I've seen them use in occupational therapy, and some toys that offer the opportunity to practice speech (Mr. Potatohead, for instance).

I found lots of great stuff for the list, but I was hoping to get some suggestions. So what do you think the list is missing?