Meds

A quick recap: Joseph had been on Adderrall. At school he started getting more and more violent. His pediatrician prescribed Risperdal. He took it for a day and a half, then I read about all the possible side effects and decided that we needed to rule out all other options first. And I read that Adderrall can cause irritability, so I took him off everything for a week. He was a little extra hyperactive at school, but guess what? He went from serious biting incidents 4 out of 5 days, to a single minor attempt to bite ONCE the whole week that he was sans meds!

Kristy has been the one taking him to the doctor for meds. I have been encouraging her to inquire about the non-stimulant meds, Strattera and Invuniv. They started giving us sample packs of Intuniv (the pharmacy said Joseph's Medicaid will not cover it?). He's been on it for about a month and a half and other than falling asleep at inconvenient times, he's doing great! We got Maria on Intuniv last week, and the improvement in her behavior is amazing. The Adderrall and Focaline worked for her, but they would wear off. The Intuniv she takes once a day, and that seems to be enough. When she goes back to school, I think her teacher won't recognize her. :)

Since we got his Medicaid approved, we've gotten home health aides to work with him. Two started a couple of weeks ago and it's been really great for him to have someone more energetic than me around to play with him. :) We need to get the third aide in place, then we go on Children's Hospital's waiting list for an ABA coordinator. But more about that later.

Christmas 2011

Christmas this year with the extended family went much more smoothly than it did last year. Joseph fell asleep in the car on the way there this time (it's not a long car ride, 20 minutes or so). We got there and he played for a while. As soon as everyone had arrived, we opened presents. He fell asleep during presents. After dinner, he was still asleep, so I stuck candy canes in his mouth until he woke up. He played with his Hexbugs for a little while, then we took him home without incident. All in all, entirely uneventful. :)

Christmas was really great. Everyone behaved, kids and adults, everyone got really awesome gifts. After I got home and we put the kids to bed, I started thinking about things like rent, utility bills, and credit card bills. Oh, the credit card bills. I remembered how tenuous our financial situation is, with Kristy being out of work, and Wal-Mart deciding that it would be a good idea to give me a credit card. And me deciding it would be a good idea to buy the kids gifts with it. And to buy myself a few things that I knew no one would be buying for me. And having to take out a loan to get Kristy a dental crown that insurance would not cover. And the car accidentS, from which we are still waiting to find out the "damage." (Kristy rear ended someone in her car at a stop light on December 1st, then she totaled my van and hit two other late model cars on I-270 on the 3rd. Our insurance coverage would not pay for one of those cars.) I started thinking about how that peaceful moment was temporary, and sooner or later, real life would impose itself on our idyllic existence.

But for now, the bill collectors are not calling, and the landlord is not harassing us about our rent or our water bill. There's nothing I can do about it right now, so I will not worry about it.

God, grant me the serenity to accept the things I cannot change. The courage to change the things that I can. And the wisdom to know the difference.

Coming soon: An update about ADHD meds. Spoiler alert! INTUNIV IS AWESOME!

Our Favorite Christmas Apps for iOS

Christmas is Joseph's favorite holiday, we discovered last year. This is our first Christmas since he got his iPad, so I'm searching for the best Christmas themed iOS apps for him and I've found some great ones already.

I'm going to post my favorite first, because it's so freakin' awesome.

Popout! The Night Before Christmas from Loud Crow - $4.99


I don't buy $5 apps. I'm far too cheap. But I downloaded the free demo of this book and was blown away. The illustrations are fantastic, they're presented in a way that make them "pop" off the screen. The animations are creative and entertaining, the music is wonderful and the narration is perfect. This is one of the few books that I haven't had to try too hard to keep Joseph from flipping to the next page before it's finished reading the one he's on. :)

123 Sticker: Free Musical Sticker Book (Christmas Edition) from Steve Glinberg - FREE

FREE is much more in my budget. :)
123 Sticker is lots of fun for Joseph. It's got nice music, and he can decorate his Christmas tree and then we can save it to the iPad's photo album and post it to the Internet.


Piggly Christmas Edition HD by Big Fish Games - FREE

Another free one, Piggly is a fun 2D scrolling game. It's got simple controls, which can still be a little challenging for Joseph, but not so much that he gives up.


FirstWords: Christmas by Learning Touch - $1.99

FirstWords: Deluxe was one of the first apps we got for Joseph. FirstWords: Christmas works exactly the same, but with a Christmas theme.

What are your kids' favorite apps and books?

A Short Update on Meds

The day after my last post, I read that Adderrall can cause irritability. We took him off of it (and the Risperdal) immediately and the violent tantrums all but vanished. After a week, we went back to his pediatrician and told them we wanted to try a nonstimulant ADHD med. they gave us a starter pack of Intuniv.

He's been taking it for two weeks now, and the violent behavior has not returned. Unlike the stimulant meds, Intuniv takes a while to start working, but I think it's helping. We need to talk with his teacher and see if she thinks this dose is helping enough.

Escalating Violence

Joseph's tantrums at school are still getting worse. He's begun throwing things at the other students. The kids pediatrician gave Kristy a prescription of Risperdal for him. We had it filled but didn't start giving it to him until last night. This isn't like Adderall or Focalin, where we will know if it works or not immediately, and the possible side effects are much more serious.

It's devastating to get an envelope full of "Critical Incident Reports" from the school, or to hear when I pick him up from his 2 hour school day that he spent half of it throwing things, screaming and crying because he wanted to play with cars instead of washing his hands and it took 5 staff members to keep him from hurting himself or someone else. Or that he broke the skin when he bit his teacher, and now she has a staph infection because maybe that impetigo wasn't really gone. I heard somewhere that you're never supposed to apologize for your parents or your children, but I feel like I should. His teacher tells me that they know that this behavior is not him, and he's the sweet little boy when he's not hulking out, and we're doing a great job considering the situation. Anyway, we're lucky to have one day a week that passes without an incident at school (well, we would be if it happened).

I used to think that ADHD was over-diagnosed. That people just didn't know how to discipline their kids, so they went and asked their doctor for pills to solve the problem for them. I used to think that it was outrageous that someone would diagnose a child with bi-polar disorder and treat them with serious drugs like lithium. When we started the kids on Adderall, I justified it by thinking that it wasn't too different from giving them caffeine. The Risperdal is not so easy though.

It's so discouraging. He has been making so much progress over the last 12 months. He used to throw tantrums, but they were the short kind where he would throw himself to the floor and scream a little. I could scoop him up, get in in his car seat, and once we were on the road he would be fine. Now, when he wants to go outside at grandma and grandpa's and he's not allowed, he starts throwing things and knocking things over. I had to physically lay on top of him on a couch for an hour while he screamed at the top of his lungs and tried to bite me (the bruises from the bites lasted for about a week).

I'm doing the best I can. We'll get through this. Everything will be fine.

I'm emotionally exhausted.

It's been three months since my last confession

Wow, I can't believe it's been three months since I've posted about Joseph.

The new school year got off to a rocky start. After about the first month, Joseph started refusing to get on the bus about have the time. Eventually, we started driving him, but he would refuse to get out of the van. Then I'd go to pick him up and he would refuse to leave the classroom and fight me when I tried to strap him into the van harness.

Tantrums got worse too. One day, at my parents house, we told him he couldn't go back outside to the backyard. First he started knocking things over, I tried to restrain him, but he struggled harder. I ended up having to lay on him for at least an hour while he screamed and thrashes. He bit my arm twice, so hard that it was bruised for a week.

I think it was the day after this incident, he had a particularly bad tantrum about having to get in the car to go home from school, his teacher asked me if anything had changed, if Kristy had gone back to work, or there were any changes to his meds. I told her no, but when I got home and I mentioned it to Kristy, she said they had reduced his Adderrall from 15 to 10mg because he had been falling asleep at school and sleeping through his whole school day. I told her to start giving him 15mg again and he showed an immediate improvement. Not perfect, but he had ONE perfect day last week without any meltdowns.

Since the beginning of the year, he's continued to make progress. In fact, one Friday he came home and just wouldn't shut up! And he wasn't just scripting or talking to himself, he was walking up to adults and saying, "Excuse me! Excuse me!" and then asking us things or telling us things. I emailed his teacher and she said she was going to ask us about it as they'd noticed that afternoon as well and they had no idea what triggered it. He's not talking quite that much now, but still much more than he had been.

Speech therapy in the morning has been, on average, a success. He still has trouble some days, but he's had a lot of great mornings when he cooperates for the entire 45 minute session. His SLP from Children's re-evaluated him and said he's made so much progress (since he was 99% non-verbal) that we need to set new speech goals for him.

He's got a new favorite activity. He draws with crayons in comp books. He carries 3 to 5 of them around in his bookbag and will draw a little in one, then switch. It's very cute and some of his drawings are better than mine. :) I'll scan some and post them later.

Joseph now has disability Medicaid. The kind that, for now at least (thanks Kasich) is unmanaged so we can use it to pay for a home health aide to come and help him with daily living stuff and play with him in the mornings before school so that we can get something done without having to turn the TV on to babysit him. Eventually, this will also pay for ABA aides. We're still looking for an aide at this point.

I think that's everything of note about Joseph. I started a new post back at the end of August about the experience of having a baby after getting an ADHD dx for one kid and an autism dx for the the other. But it sort of went off the rails. I think I need to delete the draft and start it over from the beginning. There's still something there that I need to say.

Things I Don't Discuss With The Autism Community - Part 1

There are two things that I make it a point not to discuss with my friends in the autism community because they are too divisive. One is Autism Speaks.

People have lots of things they dislike about Autism Speaks. The one that I hear the most is that they waste too much money on salaries for their executives, travel budgets and their offices on Park Av in NYC. These things, I'm not sure I object to. Their salaries seem extravagant to someone on a middle class American's income, but that's comparing apples to oranges. How much do they make compared to their peers who do similar work at other non-profits? At the American Cancer Society or the United Way? Nonprofits are companies too, and they have to offer competitive salaries to get the best employees (even though the people working there should be there primarily because of their passion for the cause). Autism Speaks also funds lots of really worthwhile research and sponsors events that help build a sense of community that I think is vital for the parents of autistic children.

The next objection to AS that I hear less often is that they operate from the perspective of the caretakers of autistic people and do not represent autistic people themselves. Autism is a condition that does not preclude a successful career. There are plenty of people with autism that are scientists, yet until 2010, there were no members of the board with autism spectrum disorders and even now there's only one out of 34 members.

Many autistics themselves are critical of AS treating autism spectrum disorders as disease. Many adult autistics see their autism as simply a big difference between themselves and the heurotypicals in the world. I don't know if I agree with that, but it's not my place to tell an autistic person who holds that belief that they are wrong and that they are broken and should be fixed.

Finally, and this is an ironic one that will lead into Part 2, Autism Speaks has lost several scientist board members because they continue to fund research into vaccines as a possible cause of autism. I know that a lot of parents will disagree with me, but I do not believe that vaccines cause autism. I believe that the scientific establishment here in the US and in Europe have thoroughly investigated this potential connection and have disproven it.

Considering these things, I don't know if I personally support this organization. But what I do know is that there are other charities that I do support, like Apps for Children With Special Needs, who gave Joseph his iPad. But like I said, many of AS's functions are important for community building. For this reason, Kristy and I will be participating in Walk Now for Autism Speaks this year, but we're not walking for Autism Speaks, we're walking for our son, and for our friends with children on the spectrum and their kids. We won't be soliciting donations, if you want to make a donation to a charity, please visit A4CWSN.com.

This is the only time I will be talking about Autism Speaks, so I hope it was thought provoking. :)

A New School

This afternoon we visited the classroom where our district is setting up their new pre-K program for students with autism. We've decided that it's the right place for Joseph at this time.

Last November we discussed putting Joseph in an autism center. I liked the idea of a program designed specifically for students with autism, and the low student to teacher ratio (at the time, Step By Step Academy still had 1 to 1 available). However, we ultimately decided that Joseph had been making great progress, and regardless of the potential for faster progress in a center, the typically developing peer models in Dublin's classrooms were more important.

They told us that this is exactly why they've established this program. They talked to parents who had chosen to use Ohio's Autism Scholarship Program (in Ohio, any autistic student can receive $20k annually to pay for education outside of the public school, this can pay for ABA aides, a private school, or an autism center). The lower student to teacher ratio was the biggest reason most of them cited.

It's all a bit technical for me, but as I mentioned in my previous post, this new class is based on the TEACCH model. The two main differences, apparently, are that it's in a typical preschool setting, and they have peer models. Joseph is the fifth student to be signed up for the class, there are already 2 peer models and 2 ASD students. They're going to be signing up more peer models to keep it balanced. The teacher and the class aide both have extensive professional experience with kids with autism spectrum disorders. They also have connections with the Nationwide Children's Hospital Autism Center so when we establish Joseph's formal ABA home program, it will be easier to coordinate with what they're doing at school. Also, the school has procured an iPad 2 for the class, and I told the teacher that if they're willing to work on it with him, we're all about sending Joseph's iPad with him to school (this is a change from his previous class, where they didn't know how it worked and were hesitant to use it).

I think that we're excited for this change. I hope that the more structured environment will be what Joseph needs.

New School Opportunity, and a general update

I'm afraid I've not been the best blogger for the past few months. I haven't had anything specific to write about Joseph's progress, and we had a new babynlast month (six weeks early). Things are starting to get back to normal though.

First, Joseph has continued to make great progress with his expressive language. At this point, he's even requesting things verbally. Apparently, he and mommy ran into one of his classroom aides, Joseph said hello to her and told her about the new baby. We've been working for a while on this home ABA program, with mixed success. It was going very well at the beginning, but now it's pretty rough. We're trying to figure out how to make it work better. Joseph was approved for SSDI and soon he should have Medicaid, then we can get the third ABA aide paid for and we can get a more formal program with a doctor from Children's Hospital in charge.

Joseph's two new obsessions are, Star Wars (particularly the Clone Wars cartoon) and the new Thundercats series. It would be worse, he's thankfully not shown interest in Thomas the Tank Engine. :)

Yesterday we got a surprise phone call from Joseph's school district. They said they just got funding for a new program in the district that they thought Joseph would do well in. It's a class based on the TEACCH method, which I'd never heard of.

From what I understand (and I encourage any readers with more information to comment) TEACCH is a teaching method designed for students with autism, that focuses on the student's strengths and interests. This class would have more one on one work, and have 8 students, half of which would be typically developing peer models. I've been told that it's very effective for students that need structure, and Joseph desperately needs structure right now.

There were two reasons that Kristy and I decided against sending him to one of the many autism centers. First, we felt that typically developing peer models are important, particularly right now. Second, we really like Joseph's teacher, and he really likes her too. We asked the school to have her call us to tell us what she thought about this new program. Kristy spoke with her today, and she said she was conflicted because she loves Joseph so much that she doesnt want to give him up, but that she does actually think that is new class would be better for him than the more general special ed class.

So Joseph's old teacher is going to go with us to meet the new teacher, and if everything goes well he will be in this new program this year. At the end of the school year, we have to decide if he is ready for kindergarten or if he should stay in preschool for another year. Based on the tremendous progress he's made since his diagnosis almost a year ago, I'm optimistic that his language and behavior will be developed enough for the mainstream kindergarten classroom.

Final Progress Report for the School Year

We got Joseph's final progress report for the year yesterday. He did very well in some areas, mastering several new skills. The least progress was in the speech section though, which I consider the most important right now.

It's discouraging. Though when he started school, he barely spoke at all, he's not improved as much as was expected.

One good piece of news though: Dublin doesn't have "special ed" classrooms. Their special ed program is inclusive. So when Joseph goes into Kindergarten, he'll be in a typical classroom with whatever supports we (his parents and his IEP team) decide are necessary for him to be successful (probably an aide). This is a big departure from my own experiences 20 years ago, when I was basically warehoused in a special ed classroom except for "specials," gym, music and art, until half-way through middle school.

Not much to say about his IEP. It's stuff like "Will greet and close with prompting 4/5 times" and stuff like that.

We don't know when the EIBI program through Children's will get rolling. We're going to try to put together something for the interim, especially since summer break just started.

Two new things we're going to be trying this summer, Therapeutic Listening and ADHD meds. We're still trying to find the right meds for Maria and we were going to wait until we got it worked out with her first, but Joseph's lack of concentration really is holding him back so we're going to talk to the pediatrician about trying some different stuff and we'll see how it helps him. When more than half of his 30 minute speech therapy appointment is spent struggling with him, trying to coax him into cooperating, it's difficult to make progress.

I've been skeptical about Therapeutic Listening, but I've heard good things about it from other parents so we're going to give it a shot when Joseph starts his next OT session in a few weeks. One thing I'm pretty sure about though, I don't believe that it's necessary to use their "special" equipment. If another set of headphones can deliver the same frequency range, I don't see why they wouldn't work. Anyway, it won't cost anything to try it out initially so it's worth a shot. I expect that if it works, it will work fine on an iPod too.

So we charge optimistically into summer. We'll do what we can and see what progress we can make with Joseph at home to better prepare him for the next school year. I haven't been posting much because I haven't felt there was anything to post about. Hopefully, the new season and new efforts will bring new things for me to write about. Keep praying for us. :)

Updates

It's been almost a month since I've updated so I'm going to try to piece together enough cohesive thought to merit a new entry.

I'm undecided about the Adderall's effect on Maria. We had the initial dosage of 5mg increased to 10mg. She's still having the same trouble at school though, and if anything she's gotten more mouthy at home.

I got a new doctor that takes our new insurance. I told her that the citalopram isn't working as well as it had been, so she put me on Abilify too. That made me exhausted all the time, so she switched it to Welbutrin.

We've been working to get Joseph's ABA program set up. In fact, Kristy and Celia go to their first aide training session tonight. We're having trouble with the funding though. As I previously mentioned, we had planned to use a Medicaid funded program, Healthchek to pay our aides as home health aides. Unfortunately, because Joseph has Caresource instead of the Medicaid that people on disability have, this is causing a problem. Caresource can (and apparently usually does) refuse requests for HHA's for kids. We're applying for disability for Joseph (which we should have done months ago) and in the meantime we'll do what we can to get his program started.

His speech continues to develop, making noticeable progress every week. He's perfectly comfortable verbalizing choices, like cereal or oatmeal etc. He's even initiating appropriate speech sometimes. We're very excited and encouraged by this. But we're impatient and he can't learn fast enough to satisfy us. His mother and one of the aides at school think that he can actually read already. At the very least, he can recognize his classmates' written names.

His behavior seems to be getting worse at times though. In fact, I've got a big scabbed-over scratch on my nose that is very distracting to me, courtesy of a temper-tantrum. This afternoon, he was bouncing all over our bed and kept jumping on me. We rolled him up in a sheet, which he loved, and he sat still for the rest of the video he was watching. We'll have to experiment with this.

My father-in-law has accepted that Joseph is autistic. We visited over the weekend for his graduation, and I overheard him talking about Joseph's autism to several people, which was relieving. I don't exactly know why, but it was extremely frustrating for me to hear him denying Joseph's condition. I probably felt that if he didn't believe that Joseph's behavior was a result of autism, then it was my shortcomings as a parent.

That's it for now.

A Difficult Decision

I haven't updated in a while. It's mostly been more of the same. Joseph is doing well in school. He's making  slow but certain progress. The iPad has been a tremendous boon. I'm going to be writing about how they're using the iPad in his classroom at school, but this will require some research to do it justice.

One new thing, that tangentially (at the moment) involves Joseph is his sister's ADHD diagnosis we received on Wednesday. It was expected, but what we didn't expect is how much Kristy and I have moved away from our insistence on trying non-medical interventions first. I've always been a big critic of prescribing medications to children to treat long-term psychiatric symptoms. But the psychologist who evaluated her said that therapy would not be helpful yet. And my kids have ADHD because I have ADHD, it's neurological, like my depression, which I spent years in denial about, which kept me from getting medicated. See the thought pattern here?

So we've decided to try medication for Maria to control her impulsive and oppositional behavior. If it doesn't work, we'll just stop. If it DOES work, then we'll know that the medication is what she needs to help her be successful in school and in life.

How this effects Joseph, if it works for Maria, we're going to try it with Joseph too. He's talking more and more, but we frequently can't understand him because he's talking so fast and the words run together. He won't stay focused on an activity that isn't of his choosing (which is also a symptom of ADHD) and with an unofficial diagnosis for his father, and an official diagnosis for his sister, I think it's safe to say we understand what the problem is. So we need to get him calmed down so we can make better, faster progress.

Kristy was previously even more set against meds, particularly stimulant meds. After Wednesday though, she was as ready as I was to put Maria on them. The behavior chart at school has been helping, but improvement has leveled off and sometimes slips. It's not getting any better.

I know the potential problems in later life associated with the stimulant meds, but I really feel that without the meds they do not have the chance to succeed, no matter what else we do for them. This gives them that chance.

Intake Assessment (and a General Update)

I met with a psychologist from the Autism Center at Children's Hospital for an "intake assessment," which apparently was just me talking with her, going over all the information about his current treatments and evaluations while he played with their toys and made a mess (and towards the end of the meeting, escaped out the door and down the hall).

The gist of this meeting is, the next step in Joseph's treatment is to get an Early Intensive Behavior Intervention (EIBI) program started (which for the sake of simplicity, I will henceforth refer to inaccurately as ABA). This will probably involve about 20 hours of one-on-one work with trained ABA aides after school. My niece is going to be one of the aides, but the doctor said we need to have at least one more aide from outside the home, so that Joseph doesn't think that Celia is the only person he needs to "work" for.

Once we find a second aide, they, Celia, and Kristy will attend a three part aide training program in May (offered every 2 months) and a doctor from the Autism Center will come out to observe Joseph and put together his treatment plan and train us and the aides on how to implement it.

We apparently can use a program called HealthChek to have Medicaid pay for the aides even, so we should be able to do all this with little or no out-of-pocket expense.

The iPad continues to be an invaluable tool. Joseph is playing games that help develop fine motor and language skills. Until we get the ABA program going, I think we will probably have Celia sit in on some of Joseph's speech therapy sessions so she can work with him at our home on his speech. I expect that the iPad will also be very helpful as a formal part of Joseph's ABA program, since it can be both a learning tool and a reward at the same time.

We're also preparing to shuffle bedrooms so that Maria and the new baby (coming in August) will have a bedroom and Joseph will have his own room. When we do that, we should be able to get a small table and chairs that can be stored in his closet and brought out then it's time to do work at home. There are too many distractions everywhere else in our home to expect him to be able to focus. Plus, Maria will be able to have STUFF in her room, which will be nice for her.

Spring break is this week. Celia is going to spend the week here to help out, but pray for my sanity anyway. :) We're going to COSI and do all kinds of cool stuff, hopefully. As well as do spring cleaning and move the bedrooms.

Oh, and Joseph is taking a break for Occupational Therapy, which will resume in 6 weeks or so. I talked to his OT and in the next session we're going to try Therapeutic Listening, which I've heard great things about from a couple other parents.

Gary at A4CWSN who gave Joseph his iPad wants to give iPads to other kids with Autism Spectrum Disorders. Please consider making a donation to this project to help other kids the way Joseph has been helped. Also, he's still taking applications for other families to receive iPads, so it wouldn't hurt to add your name to the list!

An Incredible and Unexpected Gift

Yesterday, the UPS man brought a special gift for Joseph.

Since we got Joseph his iPod Touch, one of my new favorite websites has become A4CWSN (Apps for Children With Special Needs). I mentioned the site previously in my most recent post about Joseph and his iPod. Gary James records comprehensive video reviews of all the apps listed on his site, which is wonderful because it can be hard to determine if an app will suit your needs from the description alone and there are so many apps to choose from in the iTunes app store that it can be hard to find the good ones. Gary himself is the father of five children, two of whom are autistic.

Gary read about how much we appreciated his website, and that Joseph had only an iPod Touch and not an iPad yet. He offered to help us get an iPad for Joseph, and a week later UPS was delivering one.

I cannot express how grateful we all are to Gary for this generous and unexpected gift. Joseph loves it, and wouldn't put it down for hours after I loaded his apps on it. I couldn't even get him to let me touch it.  :) Joseph's speech therapist is already researching how she can integrate the iPad into Joseph's therapy and I expect it will be a great help to Joseph.

Please subscribe to Gary's blog, Apps 4 Children With Special Needs, follow him on Twitter and 'like' him on Facebook. He wants to help more kids like Joseph get access to this technology.

What Defines Me (A Discussion About Labels)

In sociology, people are defined by 'statuses'. Statuses can be achieved or ascribed. Achieved statuses are a result of the person's own choices while ascribed statuses are involuntary.

My achieved statuses would include:

• Photographer
• Father
• Husband
• Guy who likes Reggae music

My ascribed statuses include:

• Man
• Caucasian
• Son
• Brother
• Guy with a red beard
• Father of a Child with Autism

Everyone has a 'Master Status' which they choose, either consciously or not. Their master status can be either ascribed or achieved, it's simply the single status that they feel defines them the most for whatever reason and it defines how they present themselves to others.

Whether we like it or not, my son holds the ascribed status of Autistic. I'm sure that we can agree, that status should not be his master status, defining him and consequently limiting what he can expect to achieve in his life. Since we all agree, that's why this post isn't about that. This post is about MY master status.

I spent about eight months last year, leading up to Joseph's diagnosis, mostly quietly, reading articles, watching videos and learning about autism. Once we got his diagnosis in August, it grew to consume a large part of my life. "Father of a child with Autism" became my master status, an ascribed one, probably because it's the one that I felt (and still often feel) least suited to handle, it's certainly the one that challenges me the most. Maybe because it lets me know that I'm not just a dad who has a hard time "handling" his kid.

So I don't want my son's master status to be "Autistic" and I don't want my daughter's master status to be "Sister of Autistic Guy," so can "Father of a child with Autism" be my own master status? Does that, by extension, make his master status in my eyes "Autistic"? Is there something wrong with that? For my sake, for my son's?

Tips for using Twitter for Autism Support

I started using Twitter almost three years ago, first out of curiosity, then as a marketing tool for my photography business, and then in August 2010, primarily as a way to communicate with other parents of children with autism. It's been an excellent resource, and the advanced search features that allow me to search for words in tweets based on location have helped me build a great network of autism parents, both local and worldwide. In fact, our support group is populated entirely with people from Twitter at the moment!

Because of the isolation so commonly (maybe even universally) felt by parents of children with autism, especially their primary caregivers, social media like Twitter and Facebook and the new World Autism Community are important resources for people afraid to leave their child with someone else, go to play-dates outside of home, too embarrassed by a messy home to invite people over, or too afraid their child will bolt in a crowded place and get lost or injured. Autism parents, you know what I'm talking about. Social media gives you the opportunity to engage with other grown-ups. Possibly the most personal interaction available to them. Autism has taken over my life, and I need to have others who are in the same place as I am.

Because it's so important to me, I thought it might help someone to have some tips on how to use Twitter to it's fullest potential to build your own online autism community. I'm going to skip Facebook, because you probably know how to use that already.

As I already had been using Twitter for marketing, identifying engaged people in the central Ohio area who might be in need of a wedding photographer or baby photos, I already had some tools in my Twitter tool-box. First and foremost, I wanted to build my local connections. I went to the advanced page on Twitter Search and searched for keywords 'autism' or 'autistic' within 50 miles of zip code 43235. That's it. If you use Google Reader or some other RSS aggregator, Twitter provides an RSS feed so you can subscribe to this search. I've located 22 other autism parents in my area on Twitter this way.

Next, as you find them, set up a list and add your new contacts to it, like my cbus_autism list here. As you start adding non-local autism contacts, start another list for them, like my autism list here. Twitter clients like Hootsuite and Tweetdeck (that you can use on your desktop or on a smartphone) will let you put these lists in their own columns to help them stand out from other tweets.

Something that I've found useful recently, when you add someone from a search, send them a @reply and let them know that you're following them and why. Like, 'Hey @so_and_so, I saw you tweeting about your son's GFCF diet. My son is autistic too, so I'm following you now.' This will help make sure they follow you back and let them know you're not following them to try to sell them something.

Next, make sure you identify yourself on your profile. Mention autism in your Twitter mini-bio. Some folks get lots and lots of people following them, and they have to decide in a moment whether or not to follow someone back. When someone follows me, I check their profile to see if they mention autism or photography or they are local to me. Most other folks I don't follow back unless they say something to me.

Once you've got your local network in place, you will start seeing retweets from people in the national autism community and you can start building your national network.

Use these techniques to build other networks too, even if your primary interest right now is autism, build other networks. I've been introduced to other local autism parents by my local photography contacts. Plus, it's nice to have your life not 100% defined by your child's autism. Maybe just 80%. :) But that's actually another post that I'm going to write later.

Once you have these networks of people with whom you share the trait of being the parent of a child with autism, use it. Tweet about what your kid is doing, tweet about your challenges and frustrations, tweet about therapy, even just waiting in the waiting room while they're in therapy. Upset because your kid smeared their bedroom with feces? Tweet about it, I guarantee you that you're not alone. Tweet about autism related books and films. Tweet about autism related events like AMC's excellent Sensory Friendly Films or support group meetings. Tweet links to articles you've read related to autism or your blog posts.

Tweet about other stuff too though, if you start with the cliche and oft mocked 'this is what I had for lunch' sort of stuff, eventually you will evolve a more natural and meaningful tweeting style. The most important thing on Twitter though is to engage people. When someone says something that you can identify with, or that you're curious about, respond to them. Always broadcasting and never receiving or engaging is no way to build a relationship with these people who can become your new best friends (in real life even!)

I hope this helps you find as many awesome people as I have. Follow me and say Hi!

An Update on Joseph's iPod

This being an update, you can read the first post about Joseph and is iPod here.

Joseph has had his iPod for a little over a month now (a 2nd generation, 8gb iPod Touch that we bought used on craigslist for $75), and I think he's gotten pretty used to it (and so have we). Angry Birds came off pretty quickly because he didn't want to do anything else. For a while, every time we started an educational game on for him, he wouldn't even look at it before he hit the home button and started up a movie or an episode of Spongebob. At this point though, he's playing his games more than he's watching movies, particularly the puzzle games. I might try putting Angry Birds back on soon. I put Angry Birds back on, and he's either not noticed or doesn't care. It's in a folder with other entertaining time-wasters.

Something I discovered in the meantime is the excellent blog/website Apps 4 Children With Special Needs. Gary James writes great reviews of apps, including detailed video walk-thrus. This is wonderful, because even if an app only costs a couple of dollars, it's nice to be able to see it before you buy it so you can have a better idea if it's something your kid is going to be interested in. I've seen some apps that were excellent concepts, but poorly executed, so it pays to do your research. When our tax refund came, I bought $50 of iTunes gift cards, of which I've spent about $35, and most of the apps I've bought he likes.

Joseph prefers to use his iPod on his own. If the app requires help from an adult, at this point he is usually not interested. So good apps for Joseph = Apps that Joseph can figure out on his own.

Some of the apps that Joseph particularly likes:
Puzzle Me - Jigsaw puzzle game with various levels of difficulty available.
Wood Puzzle - Exactly what it sounds like. Has a counting element, after puzzle is completed, will say "Three Chickens" or something like that.
Speech with Milo, Verbs - A cartoon mouse teaches verbs (non-concrete language is a challenge for Joseph). They also have one for Prepositions.
Monkey Preschool Lunchbox - Monkeys play games that teach various skills such as counting, colors, etc.
Cosmic Top - A psychedelic top that spins in space and makes whirring noises.
First Words Deluxe - Drag letters that look like Scrabble tiles to spell words.
VolaFriends, Faces - Select a face from a simple black screen with 9 faces showing different emotions. The face enlarges, an animation of the expression is shown along with a voice saying what emotion it is.
Bob Books - Simple stories that teach some basic spelling interactively.
Any of several memory matching games. He loves these.

These all work on iPod. We've gotten two or three apps that are iPad only by accident, like the new Milo app.

Kindergarten.com has a huge catalog of apps designed for kids with autism. I've downloaded them all but can't seem to get Joseph interested in them. I think this is a failure on my part, rather than the fault of the apps, and I'm sure that eventually they will be helpful to him.

The Otterbox Defender case that Joseph initially ruined was replaced for free by Otterbox and has survived since then. The silicon tab that protects the dock connector muffles the sound a lot, but we just leave it open when he's using it, easy enough. It's been dropped a couple of times and isn't broken yet (knock on wood). The Otterbox Defender is also available for iPhone and iPad.

At Joseph's parent/teacher conference a couple of weeks ago (no news from the conference, it doesn't warrant it's own post), I told his teacher about the iPod and told her we would send it with him to school so they could use it as a learning tool and/or motivator. I'm not sure how much or what they're doing with it with him, but it usually comes home with the battery drained, so it's getting used one way or another.

I listened to a podcast from The Coffee Klatch on the 13th about using iPads for kids with autism. Shannon Rosa, the guest being interviewed, talked about how before she won an iPad in a school raffle, she always thought of them as being not so different from large iPhones, which is what I've thought since I first saw them. She said she had an iPhone and she let her son play with it sometimes. But she said the iPad really is more than a big iPhone and it has opened up new opportunities for her son and is easier for him to use. Not to mention, some apps that I think would benefit Joseph only work on the iPad's larger screen. The podcast rekindled my interest in getting Joseph an iPad.

I have a couple of codes for an app called Word SLapPs, but it only runs on the iPad. If you have an iPad and think your child would benefit from this app, please leave me your email address and I'll send you a code (I only have two available).

How much he is learning remains to be seen. But if nothing else, he's playing with puzzles and stimulating his mind without the baskets of pieces to get lost. It's engaging him and that's a good thing. :)

Feedback Meeting at Children's Hospital Autism Center

Sorry, I should have written about this weeks ago. I've been neglecting the blog, I'm going to try to update more regularly. I'm going to be publishing an update about the iPod and how that is going shortly (spoiler: it's great!)

After Joseph's assessment in December at the autism center, I went back for the feedback meeting to get their impressions. They have confirmed the diagnosis of autism, and are classifying him as severe. Their said this is not because of the severity of his individual symptoms, but rather because of the large number of symptoms he exhibits. They said that the symptoms seem to be slight, and they are optimistic that he will be able to overcome them. He wasn't entirely cooperative during the intelligence test, but when they threw out one anomalously low scoring category, his IQ is testing in the average range.

So here's our plan. We don't want to take him out of Dublin's schools, especially from his current teacher and classroom. EIBI, Early Intensive Behavior Intervention, which is derived from Applied Behavior Analysis, is considered to be the most effective treatment for kids with autism (in general, there are of course plenty of exceptions). But it requires 20 to 40 hours a week for maximum benefit. We could get that if we took him out of public school and sent him to a center like Haugland, Step by Step or Helping Hands or took him out of school and "home-schooled" him, which would allow us to use Ohio's $20k a year Autism Scholarship to pay for the aides to work with him. Or we can try to do it at home, after school, with the help of unpaid aides (Medicaid covers everything but the aides who do the actual therapy sessions), which is what we want to try to do right now.

The next step, they will do an intake assessment with Joseph at the autism center to begin designing his treatment plan.

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.