Saturday, March 7, 2015

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.

Friday, January 30, 2015

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.

Tuesday, May 6, 2014

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.

Friday, February 21, 2014

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. 

Friday, January 25, 2013

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

Wednesday, December 19, 2012

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"

Saturday, December 1, 2012

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!