Am I autistic? Does it matter?

My counselor told me the other day that he thought I might have Asperger's.  Among other reasons, for  the fact that my most successful,  satisfying job is working for people who don't speak a lot of English,  with Co workers who generally speak no English,  with customers that my interaction is short,  limited and specific. Of course,  I corrected him and pointed out that since the DSM V,  it's all Autistic Disorder now and it's not called Asperger's anymore.

My first thought was about how to get an official diagnosis. Then I thought,  but why? It's not going to change anything. The treatments I'm receiving would be the same. Then I thought,  maybe it would excuse my awkward and sometimes unintentionally offensive behavior. Then I thought,  but is that a cop out? But then I thought,  instead of being a parent of a child with autism,  I would be a father with autism,  of a child with autism.

I already classified as not neurotypical,  because of the ADHD. And it's commonly thought that autism is a "spectrum" on which we all fall,  with more or less "autistic traits" and with a child with autism it's expected that I would have more autistic traits than is typical. I've always known I think about things differently from most other people. It does seem like a simple and probably accurate explanation. But I don't think I'd be comfortable just self-diagnosing myself as autistic.

Of course there's the valid point that this is all a question of labels and grouping,  which isn't necessarily a good thing. But I like boxes. If I think outside of The Box,  it's because I made a new box next door. That's a human thing though,  the need to identify and classify.

Ha,  the real result could be the new,  "It's a black thing,  you wouldn't understand," which is a concept I don't like. But I already know that someone really can't understand being a parent without actually being a parent,  or being the parent of a child with autism. I guess what's important is to know that you can't understand a situation you aren't personally experiencing,  but try to understand it anyway. Which is probably why anyone who does not have a child with autism would be reading this blog in the first place.

Happy Belated Birthday

Editorial note: I wrote this at the end of January,  but thought I wasn't done. I'm not sure I am now,  but I'm going to post it now anyway. 

Hey son,  I remembered before January was over that I hadn't written a birthday post for you yet. So that's an improvement.

You've been doing so well in school. Your teachers tell me you're making great progress,  though I think that what you show them and what you show me aren't the same. That's just the sort of mischief that we've come to expect from you,  you little scamp.

I just started going to PSR with you instead of sending your mother. It's given me a new perspective, seeing you in a classroom setting with your peers. I see how difficult it is for you to pay attention to what the teachers are saying,  and how your peers seem about as interesting to you as the furniture.

Your teachers from school tell me that there you actually seek out social interaction, and show preferences for certain classmates and sometimes you ask to sit with your friends at lunchtime. It gives me hope. I can't exactly teach you social skills,  to be honest mine are probably barely better than yours. :)

This year you're supposed to receive your 2nd and 3rd sacraments in the Church,  Penance and Communion. I'm anxious about it. I know they are not going to exclude you, but it's important to me that you have the appropriate education before you receive penance and Communion. That you understand the concepts of sin, and heaven and he'll,  and how God forgives your sins because you are one of his children and he loves you. I know that you're, capable of it, I know you understand right and wrong even though you sometimes don't understand WHY something is right or wrong. When you do something wrong,  I see honest regret in you,  at least sometimes.

Amusing things Joseph has said recently

Joseph was upstairs in his bedroom, which had recently had a thorough cleaning. He was supposed to be tidying up and making his bed. His almost-3 year old sister followed him upstairs. Anna can be kind of a bully sometimes. It sounded like she was making the mess worse and he was trying to get her to go away. Then, in obvious exasperation, he shouted, "God damn it!"

I yelled upstairs to him, "Joseph! Bad words!"

He called back down to me in a still angry and frustrated tone, "I know!"

What am I supposed to say to that? "Good job expressing yourself, Joseph!" or "Nice work cursing properly, Joseph!" LOL


At Joseph's IEP meeting, we decided to move more towards sight words, from the phonics based approach that has been failing. A couple of days ago, I downloaded a very simple sight words flash card app on my phone. I bribed him with iPad time to go through the first set of words with me. As expected, he only knew a couple of them (like 'and') and he was frustrated but struggling through. But at one point he stopped and looked at me and in a suspicious tone said, "Are you teaching me to read?" And I told him, "No! Of course not!" So he said, "Ok." and continued with the exercise.


I'm going to try to make shorter posts more often since I haven't been able to work up but a single long one in over a year. Hopefully you will be hearing more from us.

It's time for another IEP meeting, and for once I'm not looking forward to it

In addition to Joseph, my older daughter Maria also has an IEP, so that means twice the IEP meetings at school. Since the beginning of our work with the special education system in our school district, it's actually been a pleasant experience! That seems to be an unusual situation, and I've always understood that our kids are young, so there's plenty of time for disagreement and unpleasantness.

This year Joseph has been in the First grade and last month he turned 7 years old. I've been a terrible daddy blogger, and it's been almost 13 months since my last post! I haven't even posted a birthday letter or birthday video of him this year.

He's made so much progress since he was diagnosed at age 3 and a half, when he was effectively non-verbal. He still has speech problems, but he's definitely able to express himself verbally and understand what others are saying to him. But that's not new since last year. On reflection, I think that's part of the problem. Part of many problems even. It's why I'm feeling anxious about the upcoming IEP meeting, and why I haven't been posting here. Because over the last year, I don't think a whole lot has changed for him or us. There haven't been any new milestones to celebrate. We've simply settled into a rhythm.

But Joseph still can't read. He still doesn't know the whole alphabet even, and that is really bothering me. I see it as the next big challenge, teaching Joseph to read so he will have a new way to learn. This year, I've found myself questioning if public school is still the right setting for Joseph at this stage. Looking back at the last 3 years, I think there's no question that we made the right decision keeping him in the local public school, but things change over time. The school is entirely willing to deal with Joseph's behaviors, but are they ABLE to? I even think they've been sugar coating things more recently. Today, his daily update said "Joseph was biting and kicking today." and "I had a Good day" was circled.

Here, this is from the draft IEP his intervention specialist just sent me.

Joseph is able to label the letters in his name using a song for help. When lowercase letters are isolated, Joseph is able to expressively label 7/26 letters (a, c, m, p, q, w, x) letters, and receptively identify an average of 13/26 letters (not consistently).When uppercase letters are isolated, Joseph is able to expressively label 7/26 letters (a, b, c, m, q, t, x) letters, and receptively identify an average of 16/26 letters (not consistently). Joseph is able to receptively identify sounds for 14/26 letters given a field of 3 letter choices. Joseph is able to read the words the, boy, girl, dog, runs, jumps, swings, and sits. He is currently using the Reading Milestones reading program. He is able to label pictures with a written word in the Reading Milestones curriculum with 60% accuracy.

 He's been having a lot of behavior problems, which makes learning difficult. Apparently, this week he didn't want to work so he started taking off his clothes, and then urinated on the classroom floor. My son, the showman. They're continuing to use the positive reinforcement system they've been using, and when he gets out of control they take him to a seclusion room (with my blessing, but that's a whole different post).

Looking at the last IEP, I can clearly see he's not meeting his goals in reading, and I think it's pretty clear why: because Joseph is very clever and exceptionally good and not doing things that he doesn't want to do, and no one has figured out how to reliably motivate him.

I've always felt incredibly grateful for my kids' team at school. I feel like they really care about my children. I feel like I'm being disloyal to them, as if because I'm not satisfied with his progress that I don't think they're doing everything they can to help my son.

This monday is not going to be a rubber stamp IEP meeting, but this is such an emotional situation for me that I'm worried about making myself clearly understood without hurting anyone's feelings or sounding ungrateful or accusing. Of course, making my son's needs understood is more important than making sure that I don't hurt anyone's feelings.

I began this post on Friday intending to ruminate and finish it up over the weeken. Of course my kids got their aADHD from somewhere and now I'm headed toward work with no free time between now and the meeting tomorrow morning so this is as complete as the post is going to get. I'm typing this final paragraph on my phone. 

To My Son on His 6th Birthday

Dear Joseph,
Wow, I'm taking procrastination to new heights. At least it's still January. :)

2012 was even harder for us than 2013. You seem pretty unaware of most of our tribulations, and for that I'm thankful. Sometimes I wonder if you will remember this year when you get older. I hope just the good stuff, like Buddy Camp, Christmas, Amal and Ashlee, your teachers from last year.

Kindergarten has been great for you. You have been flourishing in your new environment. With lots of work, your communication continues to get better all the time. I'm trying to find new, interesting ways to help you expand your vocabulary. I think by this time next year, you will probably be reading. I'm excited for that.

I'm having trouble finishing this email, but I don't want to delay it any further. A couple of days before your birthday, I made this video of you.



Happy birthday, my son.

Love, Dad

Santa Claus is Real

When our first child was young, I decided that I did not want to lie to my kids because I want them to trust me, and I don't want them to grow up thinking that its ok to be dishonest.

One thing that I thought I was still lying to my kids about was Santa Claus. I didn't encourage a belief in the Fat Man too much, but I would not say Yes when asked if Santa is real. I would just tell Maria that I don't know for sure.

Saint Nicholas was a bishop in the 4th century. He's become known for secret gift giving. The story that might be the most familiar is about a man with three daughters who could not afford to pay their dowry. Because of this, he would not be able to have them married, and they would probably end up as prostitutes. Nicholas heard about this, and one night he went to the man's home and threw three purses of money in through the window (or possibly the chimney, where they landed in stockings hung by the fire to dry. Partly because of his own humility, and partly to spare the father the embarrassment, Nicholas did this anonymously. This legend is the origin of our modern Santa Claus mythology.

Now, it's not a well kept secret that my family has been struggling for the last couple of years. After Joseph's diagnosis 2 years ago, some pre-existing mental health problems were aggravated, and the short version is that we've been without regular, long-term work since around then.

Once again, this Christmas our children will be receiving gifts that have been donated to various organizations, our church, and even their teachers. I'm not entirely comfortable accepting something so personally, but I know that these people want to help me give my kids the best Christmas they can have because they care about them.

Over the last couple of weeks, I've been pondering who we should tell the kids the gifts are from. It occurred to me that these gifts are from Santa Claus. Anonymous gifts to my children from people who want to help them. Sure, it's a little cheesy or sentimental, but Santa Claus isn't a fat man who lives at the North Pole who flies around the world in a flying reindeer propelled sleigh. Santa Claus isn't parents that wrapped some of their kids' gifts in a different paper and put "From Santa" on the tags. Santa Claus is the mystery and wonderment that our kids feel when they come downstair to find wrapped presents that have materialized while they slept. Santa Claus is Gary James and the folks at A4CWSN who are in the middle of giving 40 ipads to 40 families whom theyve never met. Santa Claus is the people who brought my children the Christmas gifts they will be opening on Christmas morning, and the people from the organizations who spent the time collecting the donations, and the people who donated the money, food, clothes and toys that eventually ended up here, even though we were just a paper that said, "Girl 7, Boy 5, Girl 18 months"

AppCrayon Stylus Review

I'm behind on my stylus reviews, sorry!

Here's the AppCrayon stylus from DanoToys. You can find it in-store at Target, Walgreen's and Bed Bath & Beyond for about $10. It was designed by teachers and therapists for Kindergarteners. It's plastic but feels well-made. It's barrel is triangular to promote a tripod grip. It's tip is rubber and a little bigger than most styluses. It's slightly squishy but not too much. It's also got a thing on the end where you can attach a lanyard or something.

For educators, they're available in packs of 6 at a discount.

I like this stylus for the kids and they like it too. Obviously, it was designed with them in mind. The size is good, it seems to be durable, if they chew on the top end it's not going to damage the stylus or their teeth, and they like the bright color of the plastic. I've tried to keep them from pulling the tip off and I've been successful so far. It's on there pretty tightly. I didn't see any replacement stylus tips, but since the stylus itself is $10 and you can buy it at brick and mortar retailers so there's no shipping, if the tip comes off buying a new stylus isn't going to hurt.

I don't have anything else to say about it, because I don't really see any downside to this stylus!

Wacom's Bamboo Solo Stylus

Wacom's Bamboo series of styluses

Wacom has been the leader in pen-based computer input devices for years, so naturally they have introduced a stylus for capacitive touchscreens, like the iPad's. They've named the line after their smallest drawing tablet, the Bamboo. I'm evaluating the Bamboo Solo, MSRP $29.95.

I received the Bamboo Solo stylus gratis from Wacom for the purpose of evaluating it for use by children, particularly special needs children. I evaluated it concurrently with the Studio Neat Cosmonaut (which you can read about in it's own post).

With other, cheaper styluses I've let the kids use in the past (the next post will be about those), the rubber tip always comes off and is ruined. Typically within a couple of days. The Bamboo's rubber tip cap is secured by a cone that screws on the end, just like on a pen. When you remove it, rubber tip is exposed. It seems quite secure. To replace, you pull the old one off and push the new one on. Replacement "nibs" are $4.95 for a pack of three. In addition to the "soft" nib that is included with the Bamboo stylus, you can also purchase "firm" nibs. They sent me a replacement pack of the standard nibs, but not the firm ones so I'm unable to describe them.

My initial impression is that it's very pen-like, which is what you would expect, but you would be surprised at how little like a pen many cheaper styluses feel. It's a little shorter than a standard pen, 120.8mm. The barrel's diameter measures 9mm. According to Wikipedia, the standard pencil diameter is 6mm-7mm and it's length is 190mm. It looks like a pen, it feels like a pen. That's good because our kiddos are practicing to be able to write, draw and color with real pens and pencils.

The outside of tip of the stylus is rubber, which I am not usually a fan of. I've been looking for a good stylus that uses something other than rubber for a tip. I don't like when a stylus has that rubbery feeling when dragging a rubber tip across an iPad screen, like it's gripping the glass. However, I was pleasantly surprised by how smoothly the Bamboo glided. There is, however, a caution in the very brief  "Quick start guide" included in the package that notes, "Choking hazard, keep away from children." So I would exercise caution if your kid is a chewer (which Joseph certainly is).

Heft: Great. It doesn't feel like you're holding a toy. It has the weight and balance of a nice pen.

Chewability: Low. It's almost all metal, except for the tip. If the tip was chewed upon it probably would come off. The first tip was chewed upon and came off quickly. Not so good for oral stimmers. The non-writing end also has a little metal cap that twists off so you can remove the pocket clip. This can get lost of swallowed if fidgeted with.

Adaptability: Good. It's close enough to the standard diameter of a writing tool that adaptive devices can be used with it.

In a Nutshell: Great design, very much like a traditional writing tool. A good pick when working on more fine pen and pencil skills. I'd choose this one for handwriting practice in particular. An excellent choice as long as your child is not a chewer like mine is. :)

The 'Cosmonaut' stylus from Studio Neat

There are loads of choices when it comes to finding a stylus for your iPad or other tablet device. So of course, there are loads of reviews of styluses out there. But all the reviews I found were meant to help adults choose a stylus for themselves. Kids have different needs when it comes to choosing things like styluses, so I'm attempting to review some of the options out there.

If you're looking for a stylus for your child, consult with their occupational therapist or teacher to see what shape you should be looking for, short, long, fat, thin, etc

Don't miss my next post, about Wacom's Bamboo Solo stylus.

The Cosmonaut by Studio Neat
MSRP $25

The first stylus I received gratis from Studio Neat, which they've named the Cosmonaut. It's fatter and shorter than the typical pen or pencil that many styluses are modeled after.The barrel is rubberized from end to end and the conical rubber tip is separate from the rubberized barrel. Though I've not had problems with the cover of the tip coming off, it is a concern in the long run as the Cosmonaut's texture invites gnawing from my youngest two. But I think that activity is naturally directed at the opposite end.

The Cosmonaut's monolithic design make it pretty simple to describe. It's two distinctive features are it's size, which is comparable to a dry-erase marker, and it's rubberized grip. In Joseph's case, the size seems to be more of a hindrance than a help, making it more difficult for him to form the proper tripod grip which he's been working on for a while and is coming along nicely. That's not to say this is a flaw, every kid is going to have their own needs. So if your child's OT says that wider writing tools would be easier for them to use, then this is a great bonusin their case. I've been informed that the fatter size is better for people tired hands and motor skill deficits.

The rubber that encases the Cosmonaut is the same texture as the outer layer of our OtterBox iPad case. It makes it very easy to grip, which means that it's easy for food and dirt to stick to it, but it wipes off easily.

Chewability: Excellent. If your kid is an oral stimmer like mine, the Cosmonaut is a good choice.

Adaptability: Not so much. It's unique size makes it impossible to use all the little attachments that help build a good tripod grip, but that may not be an issue if this is otherwise a good stylus for your child.

In a Nutshell: Great for oral stimmers, for kiddos with weak grips and fine motor difficulties, and for activities that would normally be done with a marker (coloring, some drawing, etc). I think the durability is the Cosmonaut's strongest feature.

Seeing Things a Little Differently

^not my photo :)

Friday we visited Joseph's new classroom for the walk-through. I saw something that I haven't seen since before his diagnosis. I watched Joseph in the middle of a group of typically developing kids of his own age.

Just before Joseph turned 3, my wife and I had to put the kids both in daycare for a few hours a week while I was in school and she was at work. That's when we were told that he needed to be evaluated for developmental delays. One day, when I arrived to pick Joseph up, I approached the classroom and saw them through the window. The teacher was sitting in a chair reading a book to the kids. There were probably 6 to 8 other kids sitting attentively in a semi-circle in front of her. And on one end of this row of children, Joseph laid on the floor, rocking gently from side to side, with his hand stuck in the back of his shirt fidgeting with the tag.

After his diagnosis, the only times I've seen him as part of a group of peers has been in his special needs pre-k class, which was half developmentally delayed kids and half typical peer models. It was frequently hard to tell which kids were which, but Joseph always stood out as he was consistently the most "high-spirited" in his class. But the classes were generally pretty small, and Joseph didn't seem so different from the other kids.

So Friday, Joseph visited his new classroom and his new teacher along with most of his new classmates. Dublin is an inclusive school system, so he will be in a general education classroom and taken out to their special ed "resource room" by his intervention specialist as needed. So the new teacher (who was Maria's Kindergarten teacher two years ago) took all the kids to her classroom. She introduced herself and then took the kids on a short tour of the room. Joseph got distracted by something halfway through and got left behind. After the tour, the class had a little mini-circle time. The teacher had them all introduce themselves by name (which Joseph is very good at: "My name's Joseph!"), then she read them a story about the first day of Kindergarten, and she talked to the kids about the story.

Listening to Joseph's peers talking, articulating their understanding of the story, the contrast made me realize just how far he still has to go to "catch up." It was sobering, but not discouraging, depressing or disappointing (probably in part thanks to Celexa and Wellbutrin.)

We're at a point of new beginnings with Joseph. On Monday, he starts Kindergarten and will be surrounded by 90% typical peers for the first time in two years. Also, we are finally getting his ABA program started. We're so close, we had the start-up training scheduled and our psychologist had to leave town suddenly and it got postponed the day before it was supposed to happen. The point is, my resolve has been strengthened, and I'm more confident than ever that he is on the precipice of great progress.

For example, this morning he told me that last night he dreamt of unicorns. That was pretty remarkable, it is the first time that he's told us anything about his dreams. He asked me if I dream about dragons. Then he asked his baby sister what she does at night. :)

Mini-post: Free Stuff Your Kid Might Like

Joseph doesn't get obsessions to the extent that some people with autism do, but he does tend to get hyper-focus on things for short periods of time (until he discovers something more interesting comes along.) Right now, he loves maps and prefers the paper ones (that he can somehow refold correctly!)

Across the street from my therapists office is a AAA location. I got a AAA membership from my folks last Christmas. I remembered that back in the old days, before MapQuest, AAA gave members free maps.

I was early today, so I stopped in to check it out. They do still give free maps to members, and guidebooks too. Maria and I loaded up on maps to give Joseph as rewards. I think we might also use a trip to AAA to pick out his own map as a special reward.

How to Use Tech to Help Manage Your Time

I promised a couple of months ago that I would write about how I use tech to make my life as a special needs parent easier. The system I use can be used by any busy person really (and it is). Of course I started a post, got distracted and then totally forgot about it until I came back yesterday to post about something entirely unrelated. So I'm going to try again. I'm not an expert, I just think I have found a system that works for me. So take from it what you feel would be useful in your situation. I'll be glad to offer what advice I can if you need to adapt what I've done to meet your own unique needs.

There are two main components to my scheduling system:

• a smartphone (iPhone or Android) or an iPod Touch
• a GMail account

Everything I do is on a shoestring budget. If you can't afford a smartphone, look at used iPod Touches. They have all the same calendar features. Our first iOS device was an 8gb 2nd generation iPod Touch for which we paid $80 on Craigslist. Even if you have a non-smartphone, if you can receive text messages, you can add and edit appointments at home, and get text message reminders. And GMail accounts are free.

Both iOS and Android devices will allow you to directly access your Google Calendars through their own calendar apps. I'm not going into detail here, but you can find configuration instructions for iOS, and since you have to enter your GMail info into your Android phone, it does the rest for you.

Once I had a GMail account and an iPod Touch, I created multiple calendars in GMail that I could view concurrently. There are calendars for me, my wife, Joseph, Maria, Anna, and my work stuff. Whether I'm viewing my calendar in a web browser or from my mobile device, I can choose to view all the calendars, some, or one. When I'm scheduling a new appointment, I just have to look at that day and I see a color coded schedule so I can make sure I don't double-book someone and I have enough travel time (promptness is very important to me). See this YouTube video that some other helpful person made, and which I've embedded below.



Once you have your calendars set up, you can add repeating events, like your weekly OT and SLP appointments. I've got two kids in speech therapy, one weekly and the other bi-weekly. Without this, I would be totally lost. After you've created a repeating event, you can make "exceptions", where you edit a single instance of the event, or delete it, without changing the rest of your series. So your SLP is on vacation, just delete that instance of the event.

GMail/Google Calendar can remind you about your appointments in several ways. If you're using an iOS or Android device, a pop-up is probably the easiest way. In any case, I prefer to be notified 24 hours before an appointment, and then again 1 hour before. Though I'm considering switching from 24 hrs to 12 hrs for the first reminder. Anyway, you can learn how to change your default reminders here. That way, when you create a new event it will have the default reminders already set.

Finally, you can share your calendars on an individual basis with other GMail users. My wife and one of our aides have GMail accounts, so my wife can see and make changes to all of our calendars, and our aide can see Joseph's calendar (which includes events that tell us which aide is scheduled for what time.) That way, if Joseph has an appointment that is outside of his regular routine, or he doesn't have an appointment that he would normally have, everyone with access to the calendar can see that.

Please ask questions. I'm sure there's something that I've failed to mention here.

Next time, I'll be writing about how I use a scanner an Dropbox to keep all the mountains of paperwork, forms, and questionnaires organized, and I'll share how it's saved my ass.

Does Autism Suck?

I read this blog post from another autism dad. It's complaining about people who say that they "wouldn't change their (autistic) child for the world." I was resharing the link on Facebook, but my comment started to get lengthy so I decided to see if I could eke an entire blog post of my own out of this idea.

I'm very concerned about what autistic self-advocates have to say. My son can't get philosophical about his diagnosis yet, so I listen to what people like Ari Ne'eman and Temple Grandin have to say about it. The impression that I get, generally, is that high functioning adults with autism would not choose to be neuro-typical. But that's over-simplifying things. I don't know quite so much about Ari, because no one has made a biopic about him yet, but Temple Grandin has always suffered from crippling anxiety. You can't tell me that if she could take away that anxiety and leave everything else the same that she wouldn't do it. She just wouldn't want to give up the strengths her autism gives her to get rid of the deficits and challenges.

I've got my own psychological diagnoses. I have been diagnosed with ADHD, depression, anxiety, etc. The ADHD is the only one that I think it's fair to compare in this situation. ADHD has benefits and disadvantages.  Whereas depression and anxiety, they just suck all the time. ADHD lets me hyperfocus on a task, whether it's reading a fascinating book or trying to solve a problem or just researching a subject that I'm curious about. ADHD also kept me from getting decent grades in any math class I've taken, ever. Well, ok, except geometry. I got a B in that one. My graduating GPA in high school was 1.666. But I digress. (That's the ADHD too.)

If I could snap my fingers and not be ADHD anymore, would I? I can't say for sure. If I could snap my fingers and not have trouble focusing on stuff that I find boring? In a heartbeat.

Joseph's expressive communication is pretty limited. It's far better than it was two years ago when he was diagnosed with autism and he was effectively non-verbal, but he doesn't come home from school and tell me what he did that day without a lot of help, and he never tells me about his classmates unless I remind him who they are.

Joseph also has a genius level IQ and extraordinary spatial reasoning skills. He builds wonderful creations with his LEGOS and K'nex, or out of cardboard boxes and tubes. His teachers and therapists are always talking about how they expect him to become an amazing architect or civil engineer.

If I could choose for him, would I choose for him to be hitting all his developmental milestones right where the docs say he should, have a 100 point IQ, a C average in school, etc, in exchange for him being able to communicate more effectively? No. I don't think so. And I think that's what people are talking about when they say they wouldn't choose to be neuro-typical, or for their child to not be autistic.

But a little more talking would be super. And a little more awareness of danger. And it would have been nice to have him toilet trained before his 5th birthday. And I'd love to be able to take him to the store and not have to worry about him disappearing at warp speed if I let go of his hand for a moment.

It doesn't mean I love my son any less than I would if he was some abnormally normal kid. Every rose has its thorn. Except now they have these genetically modified roses that actually don't have thorns or something. But that breaks the metaphor that's supposed to anchor this whole post, so let's forget about them.

Upcoming series: How to be the digital parent of a child with special needs

I'm planning a series of blog posts about how to effectively (and cheaply) use the digital tools that are available to us to better manage the business of being a special needs parent.

The posts will include:

• Scheduling - How to effectively manage your time and keep track of who needs to be where when
• Record keeping - Stop killing trees and be able to find that ONE paper that you need
• Communication management - Keeping in touch with parents, teachers, therapists and everyone else
• Social media - Having a digital social life

What are your favorite tricks, apps, that you can't imagine living without? Can you think of any other subjects that should be covered? Do you want to write a guest post?

About nothing in particular

I've been neglecting my blogging terribly. I haven't written anything in three months. So what have we been up to?

Well, we have been preparing for the big transition to Kindergarten this fall. Everyone's excited. When we went to the meeting for Joseph's "school-age" IEP, the school psychologist mentioned how excited she was to work with Joseph because they don't often get special needs students with his level of intelligence.

His general education teacher will be Maria's teacher for Kindergarten and his intervention specialist was a para-pro for an ASD boy that was in Maria's class in Kindergarten, so we already know them.

Kristy and I are excited because we feel like keeping him around the typically developing peer models has paid off, and since Dublin's classes are inclusive, he will have a lot more peer models next year. We expect that his development is just going to explode, having the one-on-one help from a para-pro at all times during school, and having so many other typical kids to interact with and learn from.

Since the beginning of April, Joseph has been participating in an awesome program run by the Hilliard Ohio Soccer Associatiob called TOPSoccer. It's a soccer program for kids whose special needs prevent them from participating in typical soccer programs (which at this point I think Joseph's lack of focus and difficulty following instructions make him fit that qualification).

We knew that we wanted to start getting Joseph involved in some activities, particularly some physical ones geared towards kids with autism and/or other special needs. I'm really glad that we found TOPSoccer.

Registration was $10 for the season and he got shin guards, socks and a t-shirt. We might have gotten cleat from them or Kristy may have gotten them from the Dublin Soccer League when we were getting Maria signed up for their program.

In any case, there were 8 sessions this season, the first 5 (during the damp month of April) were indoors at Soccer First just outside Dublin. The last three (the final session is this coming Saturday) are outdoors at the Hilliard Soccer Complex.

Sometimes Joseph doesn't feel like participating, but that's ok. He's never the only one. Probably 80% of the kids there have "invisible" disabilities like autism. There were a few really brave kids there participating in wheelchairs and on crutches. It's chaotic, but what do you expect? :)

And thank God for Joseph's aide who goes with us. We would not be doing his without her. I'm about as far from "athletic" as you can get. I wouldn't be able to handle chasing Joseph around a soccer field for an hour!

Like I said, the last session is this weekend and I'm already looking forward to the fall season!

We've continued to struggle with getting his aide schedule filled completely. Around the time we got our third aide, the first one quit suddenly. We interviewed several more and hired 2 that never showed up at the agency to get signed on. At this point we've had the same 2 since I think February. We've got a third who is a student at OSU studying speech and hearing, which I think will be excellent for Joseph since one of his biggest challenges is verbal communication. She can't start until the end of the quarter, but she will be able to work 12 hours a week with him. I've been in touch with her by email a few times since we offered her the position and she seems enthusiastic about it, so I don't think she's going to disappear on us before she starts. :)

Coming up this summer, Joseph will go to one week of summer school before Buddy Camp starts. Buddy Camp is a half day camp where ASD kids attend with an aide and a you ally developing peer. The staff (from Children's Hospital's autism center) helps them work on heir interpersonal skills, socialization and cooperation and that sort of thing. I think Joseph is going to love it. We've also got him signed up for a two-hour a week pre-writing skills class and a one-hour a week pre-reading class. I want to try to get some of those IEP goal for next year mastered before the school year starts! And the structure will be good for him. I think we will need a more physical activity for the afternoons though, to help him burn off all that ADHD energy.

So I guess there's been a lot more going on to write about than I thought there was. Joseph has continued to make progress in leaps and bounds. I'm more optimistic than ever that he will eventually find his place in the world where he can be happy, healthy, independent, successful and fulfilled.

Until next time, I'd to hear your thoughts about something. I have a secret: I've always been uncomfortable around people with disabilities. Obviously, that's changed a lot over recent years. One feeling I struggle with though is a sort of guilt wrapped in pity. Do you ever feel guilty for feeling glad that your kiddo doesn't have some challenge or deficit that another child has?

A New Milestone of Speech and Social Development (and a Fight)

This is not about my dad. But I have to write about him to set the stage.

There was a big fight between me and my dad today, (actually, as I write this I'm sitting outside in the car, collecting myself) because I left Joseph alone for a minute just after we arrived and he accidentally broke the dust cover of an old thrift store turntable that was left out on the floor. The fight is not the important part though, it's entirely incidental. After taking the turntable out to throw it away, my dad started shouting at me about how when we visit I don't watch the kids. When it was apparent that he was going to continue ranting, I decided that it would be best if we left.

Both Joseph and Maria became very upset. I took them out to the car, leaving Kristy and the baby behind to follow us. We, myself and the two older kids, sat in the car for a while waiting for Kristy to join us, the kids both in tears not because of the shouting but because they didn't want to go. They wanted to stay and play in the traces of snow in the backyard and see their cousins and my brother + wife and new baby who will be visiting from Cincinnati for his birthday today.

After we had waited probably five minutes in the car, my dad came out and stood outside my car window. I opened the door to let him speak. He apologized for being a raging asshole (my words, not his) and then (this is the remarkable part, and the only reason I'm posting about this), Joseph leaned into the front seat from behind me, and still sobbing said,


"I'm sorry I broke your record player, grandpa."

as clear as day.

I'm so proud of him, not only that he used words to express this, but that he understood (at least on a very basic level) that he had done something wrong and that grandpa was upset because of it (even though grandpa was not shouting at him and made it pretty clear that I was the one with whom he was angry.) This is a very significant sign of him understanding complex interpersonal dynamics and responsibility in a way that I was previously not aware that he was able. He understood that because he broke the record player, grandpa was upset and because grandpa was upset we were leaving.

I don't want him to feel like its his FAULT or that anyone was mad at him of course, it was an accident. But his response to the situation was a "normal" and appropriate one, and a milestone in his development. Hopefully the next milestone can be less tumultuous.

Here's a photo of what he was doing with the record player, moments before the accident. It was terribly cute.

To my son on his 5th birthday

Dear Joseph, last week you turned five years old (you know what a procrastinator I am). 2011 has been a difficult year for us as a family, but it's been a great year for you as a person.

A year ago, we were in the middle of getting a second diagnosis from the autism center at Children's Hospital. We'd already gotten a diagnosis from the Nisonger Center, but without an evaluation, I felt like we were directionless. We had been seeing improvement since you had started school with Mrs G, but we didn't know if public school was better for you than an autism center. We had just found out a month before that your mother was pregnant again, which brought a whole different kind of stress. We had no idea how to communicate with you, or how to help you reach your fullest potential.

You've made so much progress in the past year. Every day, you're becoming more verbal. We've discovered that you love comic books, and I think that's so cool. You've started building with Legos, making robots and spaceships and airplanes. You received the gift of an iPad, which has begun to open up a new world of information and learning to you. We've got two great aides that have been coming here to work with you, and even after less than a month, and before we even have an actual therapy program in place, we are seeing great progress. And most exciting for us, you've learned to use the toilet.

My fifth birthday is the first one I remember. You turning five has changed my perspective. Until now, I haven't noticed your challenges as acutely. It just seemed to me like you were a really big toddler. But I remember where I was and what my life was like when I turned five, and it's so different from yours.

We met with your teacher the other day where we decided together that you'll be ready for kindergarten this fall. I have great faith in you. I'm proud of everything you've accomplished so far, and I can't wait to see what you'll do next. We know that we're blessed to have found the best possible people to surround you with, to help you learn and grow, and with their help and God's you will meet your maximum potential and have a long, happy, productive life full of people that love you.

Love,
Dad

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?