Another Assessment

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

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

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

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

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

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

Our First Autism Christmas

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

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

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

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

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

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

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

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

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

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

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

Merry Christmas, everyone. :)

Visiting Santa

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

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

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

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

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

Christmas Gifts

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

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

An Early Christmas Surprise

We've been trying for a week to get our Christmas tree put up. Last evening, we started to get it done, but by 8 o'clock we were still untangling strings of lights. We decided to put the kids to bed, and finish the next day.

When Kristy and I went to bed, we heard Joseph sobbing. We went to check on him and found him whimpering in his sleep, laying on his front, with his knees pulled up to his stomach. We took him back to our room to comfort him and let him sleep in our bed. Kristy gave him some Ibuprofen.

Around 3AM I was awakened by the cheerful sounds of my son at play. I woke Kristy and I said, 'You know Joseph's awake, don't you?' Forgetting that he was not in his room when I went to sleep. She got up and went downstairs where she found him singing Jingle Bells (the whole chorus, and quite clearly too!), shouting "Merry Christmas" and dancing around the tree that he had finished decorating to the best of his abilities (taking into account his vertical limitations). Including the candy canes that he had climbed on the counter to retrieve from the top of the refrigerator. Then he got a chocolate cake out of the pantry, sat down on the couch in front of the tree and ate it, getting crumbs all over the floor, couch and my netbook (I was very relieved to find out the brown stuff stuck to my computer was cake and not something else that Joseph has been known to play with inappropriately in the past).

We put him back in his room, but as far as I can tell he stayed awake for the rest of the morning until it was time for school.

First, I thought this was just cute. Thinking it over repeatedly in preparation for writing about it has made me realize something more profound though;  Almost all of the rotten stuff Joseph does, he does for good reasons. Out of curiosity, enthusiasm or just plain joy. Not for laziness, greed, or selfishness. He's so excited about everything in his world that he can't deal with it in a disciplined way. I think this is a very important realization for me.

What I'm Thankful For

It's Thanksgiving, and I've been working on this post since the beginning of the month. Not because Thanksgiving was coming up, but rather because I'd been thinking about the things that challenge him, versus all the other challenges that are common for autistic people. When I realized Thanksgiving was at the end of the month, I decided to take my time and make this a special Thanksgiving post.

Everyone has their own set of gifts and challenges, and these are some of Joseph's.

He might not be able to talk much yet, but I'm thankful that one of the few things he can say is, "I love you!" and you can tell he means it.

I'm thankful that my son is affectionate and loves to give us hugs and kisses.

I'm thankful that my son is ticklish and loves to be tickled.

He might be constantly trying to run away and escape to go exploring, but I'm thankful that my son can walk, run and climb. And so fast too.

He might frequently refuse to eat breakfast, lunch and dinner, but I'm thankful that my son does not have digestive problems.

I'm thankful that my son likes music and can sing Bob Marley songs with me.

He might have trouble paying attention to a lot of things, but I'm thankful that if nothing else, my son can be occupied by TV.

I'm thankful that my son has good taste in cartoons and likes Animaniacs.

It might be difficult to keep things away from him that he shouldn't get into, but I'm thankful that my son is smart enough and determined enough to figure out how to get around the obstacles we put in his way, because some day those will be obstacles to his happiness and success that he is overcoming.

I'm thankful that I have family nearby that can help with both of my kids so that I can take a break every once in a while so I'm better able to take care of them.

He might not be able to be in typical classes yet at school, but I'm thankful that we are in a great school district for special needs students, and my son has spectacular teachers that he loves.

He might not be able to tell me about them yet, but I'm glad my son seems to be developing friendships with his classmates at school, and that they seem happy to see him.

We might have financial problems, but I'm thankful that when my son needed to start the various therapies at Children's Hospital, he had Medicaid coverage so we could focus on what he needs and not how we would pay for it.

He might have trouble getting to sleep because he and is sister keep each other awake, but I'm thankful that once he's asleep my son is a sound sleeper.

I'm thankful that whatever my son chooses to do, he does with his whole self.

I'm thankful that my son got his mother's ears and not mine. :)

Bus Problems

Last week Joseph's bus aide gave me a paper with the school's rule about children needing to be "under control" in order to ride the bus. When I put Joseph on the bus, for some reason more often than not, he freaks out on me as soon s he realizes he's getting on the bus. I wasn't too worried about it because I knew that starting this week, his mother would be putting him on the bus and he cooperates with her and usually gets on cheerfully.

We're helping a friend, a single mother with a 7 year old son with autism. She just got a job after being unemployed for 6 months and she needed someone to watch Dominic for an hour and a half in the morning and then drive him to school. Joseph gets on the bus at 8:05, and so I would not have to get Dominic's coat on and take him out to Joseph's bus, Kristy moved her schedule so she goes in to work at 8:30 so she could put Joseph on the bus.

This morning, 10 minutes before it was time to meet the bus, Joseph saw the ironing board and pulled it out of the laundry side of the basement. When I took it away, he went into total meltdown, scratching and biting when I picked him up. We even gave him a little cake and he tried to throw it at us. Kristy took him out to the bus and they refused to take him. I don't entirely blame them, but this morning it is disastrously inconvenient.

Our car is a 4 door sedan, a late 90's model Escort. We can't fit Joseph, Maria AND Dominic in the car because they all need booster seats. We can't leave them home alone, of course. So that means I had to stay home and Kristy had to take Joseph to school, which takes 12-15 minutes each way (and I'm not sure they won't make her wait when she arrives to drop him off). Which means there is pretty much no way she can make it to work by 8:30. And at work she is on a Final Warning for tardies (left over from when she was "fired" during the summer). Which means that if she's late, she loses her job. If she calls off, she doesn't get fired, but she doesn't get paid for today either. It's a ridiculous policy that encourages absenteeism over tardiness. Because of various payroll cock-ups over the last few weeks, we're way behind on bills this month and money saved for rent. So this is exacerbating the situation.

We need to get a mini-van, these problems have been coming up more often, but I don't think we can afford to buy one until we get our tax refund next year.

Children's Hospital Intake Assessment

We finally got in to talk to someone at Children's Hospital's Autism Center. It was a short meeting, we scheduled the proper assessments for December. She also gave us a big book about Intensive Behavior Intervention (a style of or evolved from ABA?) and said that they encourage parents to get their kids into "center-based programs" (autism schools) as early as possible. We're hesitant about this. As I've said many times before, we love Joseph's school and his teachers are awesome and he loves them, and he's making so much progress there. But what if he could be making better progress in an autism school?

Kristy feels the same way, that she likes where he is and doesn't want to move him. I suspect that our judgement is based on emotional attachment though, and that's not necessarily the way we should be approaching it. What I really want is for Joseph to be in school like he is now for half the day, then spend the other half doing this IBI therapy. I don't think I have the patience, or more importantly the energy, to do the IBI with him myself for the 20-30 hours a week that would be necessary.

A friend of ours also let us know about a scholarship for St. Andrew's, where her 6 year old goes. She said she was told that so few people apply for it that sometimes it goes unclaimed and she suggested that Maria might do well there. We're hesitant about that either.

I think I just hate change, and we're just finally getting used to how everything has been since September, and now we're talking about changing the schools the kids are going to and it's making me very anxious. I feel like taking them out of the schools they're in now would be a criticism of the wonderful people who have been helping both of them. I feel like we're getting conflicting advice, his teacher at school says ABA is limiting and only reliably produces the same results in the same setting, the psychologist at Children's says a classroom curriculum not designed for autism specifically is not optimal and will produce slower progress at this early stage. Plus Kristy has misgivings about the use of "isolation" at Haugland, which is at the top of our list because of proximity to home, but we haven't talked to them about it to have them explain what it is and how they use it.

I think the best plan of action at this point is to continue to research our options and wait until the actual assessment is complete. I've been feeling a lot closer to God in the last few weeks since Maria and I have been going to Mass almost every morning, and I feel like he's listening to my prayers. So I'll ask him his opinion too. :)

My son doesn't have a disability, he just has extra challenges.

There's nothing that Joseph is not able to do, it's just harder for him to do some things than it is for typical kids. But there are things that he is better at than typical kids.

Autism is about excesses and deficits. Everyone has them, people with autism just have them to the nth degree. Some deficits cause more problems than others, the difficulty he's having learning to talk would be the most obvious example. But he has already shown us that he has an exceptional (or excessive) aptitude for solving problems.

I used to think that saying someone was "differently-abled" or "x-challenged" was a bunch of politically correct rubbish. It still sounds treacly-sweet to me, but now I understand it better and have more respect for that way of looking at it. This is yet another way that having an autistic son has forced me to become a better person.

I've heard it put many ways, but I think the simplest is this: My son is different, not less. (I think I'm paraphrasing one of my many friends on Twitter.) The cynical voice in my head says that this is just a coping mechanism, but the rest of me tells that voice to STFU. ;)

Paperwork, an Update

After stalking Craigslist with Google Reader for a couple of weeks, I picked up an HP PSC 1310 printer/scanner for $20. It's allowed me to start scanning our mountains of paperwork, not just for Joseph (though he does account for the bulk of it) but for the rest of the family as well. It's already come in handy a couple of times. New Board of Dev Disabilities service manager needs Joseph's insurance card? Sure, I'll email that to you. I'm also signed up with Dropbox, so I can securely access the files online from anywhere there's an internet connection and a PDF reader.

Now I just have to file the piles of already-scanned papers that are building up on my desk. :)

Joseph's First Field Trip

I went with Joseph on his first class field trip Thursday, to the pumpkin patch at Jacquemin Farms.

He did not want to sit still for the short presentation about pumpkins at the beginning, which is hardly surprising. One of the classroom aides took him for me and sat him on a table off the the side and rubbed his shoulders and he calmed down. 





We walked out to the field where they grow their pumpkins, he insisted on walking all the way to the end of the field to pick his. 



Then after he had a snack, he and his classmates spent about an hour chasing each other through a small hay-bale maze and playing in a corn pit.





His only tantrums were when he didn't want to sit still at the beginning, and then when we tried to leave. He head-butted me, tried to take my glasses and throw them, tried to bite me, then went limp and flopped on the ground. Aside from that, and trying to climb on the 7 foot tall pile of hay-bales with the "DO NOT CLIMB" signs on it, he was very well behaved and had a great time. :) I am even more convinced now that his teacher and aides are the greatest.

After watching Joseph play in the corn, I'm thinking about building one of these for Joseph. I'm not sure I'm handy enough though.


(Inserting photos from Flickr into Blogger posts is a pain in the butt.)

Starting Speech Therapy Again

Wednesday, Joseph and I met his new speech therapist, Lori. She seemed to understand Joseph and his motivations pretty well, which I think is key to making progress with him. Instead of trying to get him to sit at the table with her, she sat down on the floor and invited him to do the same. He wasn't terribly cooperative yet, he kept hiding under the table and had trouble getting distracted by the toys on top of her cabinet, but she got him to talk a bit, asking for parts of Mr. Potatohead, etc.

In other news, we went on Joseph's first field trip today, and in a couple of weeks, we've got an appointment at the Children's Hospital Autism Center where we can begin the process of having Joseph fully assessed. Hopefully we'll have a better idea of what we can expect from him, and what help he needs from us.

Columbus Autism Parents Support Group

It seems like autism parents' support groups are hard to find. I've been lucky enough to practically fall into one. Shortly before Joseph's diagnosis, my former Explorer Scout leader connected me on Facebook with a friend of hers, Susan Richardson. Shortly after the diagnosis she invited us to a support group session that she was hosting.

It was a small group, and I'm afraid I talked too much, but it was very helpful and it made both Kristy and myself feel a lot better. Susan herself has degrees in counseling and art therapy and has been an invaluable guide for me in this period in my life.

The group's next session will be on October 23rd in Westerville. If you're in central Ohio and have a child on the spectrum, I highly recommend you check it out. Every time I write about the isolation we feel, I find many people who feel exactly the same way. This is a way to do something about that because with 1 in 110 children having autism, none of us have to be alone. I keep hearing this, from my mother, on random TV shows, in various other places, when you're on an airplane the flight attendants tell you that if there's an emergency to put your own oxygen mask on before helping your child or other person who might need help. Because if you don't help yourself first, then you can't help them.


So I'd love to see you there!

Our First Parent Teacher Conference

Kristy and I went to Joseph's first parent-teacher conference today. His teacher and aides had a lot of great things to say about him. He's doing really well with the routine in the classroom, and is even transitioning on his own from one activity to the next (even though sometimes he tries to cheat and skip things he doesn't like). He loves the art table and the sensory table, and he's showing real interest in reading and writing and knows the letters in his name. They also said he is a very hard worker, which I'm very glad to hear.

Two of the most exciting things: first, he's already met one of his IEP goals for the year, making eye contact when spoken to, and he's making great progress on his other goals like playing turn-based games with his peers. The other is he's figured out a pattern game on the class calendar that none of the other students (including the typically developing peer models) have figured out yet. His teacher even used the word "brilliant" to describe Joseph.

She said they would be happy to have me observe class some time. They said today was one of his best days all year, which his bus driver said they told her last week too, so it sounds like he's improving all the time. I'm excited to see first hand how he's functioning at school. And I'm also looking forward to going with them for their first class field trip to the pumpkin patch next week. :) I haven't posted any photos of video recently, so I'll be sure to get some good stuff.

I also observed Joseph's social skills group last Thursday but totally forgot to write about it, so I will post about that later. It will be interesting to compare what I saw there to what I will see at school.

The Secret Society of Autism Parents

Joseph isn't the only one who has trouble developing age appropriate relationships with his peers. I've always been socially awkward. I've always felt that I'm different from everybody else, that I've got very little in common with other people. This makes it difficult for me to relate to others when it comes to social niceties. My topics of conversation tend to be a little more obscure and esoteric, or non-existent since the scope of my life is rather limited these days. Let's just say, I don't chat about the weather, and you can forget about sports. :)

Parenting a child who is autistic has become my primary activity, as I think it is for many others. The downside to this is that I generally have little energy left for anything else. But the upside is that I have an instant connection with other autism parents, and I think we're all happy to talk and listen about each other's kids and the challenges that come with being in the unique situation in which we find ourselves.

I think that I'm not alone in finding immense comfort in talking to other autism parents. Isolation is a serious problem for us, for many reasons. It's imposed on us, because people who aren't in our situation can't truly understand what we're dealing with, and self-imposed because we are hesitant to do the things that typical parents do with typical kids like going to the movies, eating at restaurants (even if we could afford it), going to the library, because we never know when the next meltdown is going to come. As for having people over, our house is always such a mess we don't want to expose anyone to it.

Kristy and I stopped going to Mass because we couldn't keep Joseph under control there either and it made us self-conscious. Don't get me wrong, this was our hang-up, it's not because anyone was rude to us at church. We started going every week again after we went to a different church and found ourselves sitting next to a single mom with two kids, one of whom is a seven year old boy with autism. After Mass, we told her that Joseph is autistic, she said she recognized the signs and asked if we were going to be going to that Mass regularly because it was nice to be there with other people who "get it."

The isolation started long before the diagnosis, or even suspicion that Joseph was autistic. Putting a label on it finally told us that we're not alone, helped us to recognize the isolation and to start doing something about it. I feel like being the parent of a child with autism is like being a member of an ever-growing fraternity, like Skull and Bones or the Freemasons. I feel like we should have our own secret handshake.

If you're the parent of a child with autism in the Central Ohio area, or you find yourself in the area, let me know. Maybe we can hang out at the McDonald's Playplace and chat or something. :) We need to stick together. Also, I want to tell you that I appreciate the friendship and support of all our family and friends, new and old, parents of autistic kids or not. We've drifted away from many of you and see you less often. All I can say is, I hope that we will learn to handle things better and our exile from having social lives will be a temporary situation.

Oh, and in other news, Joseph is talking a lot more and we're going to be resuming speech therapy on the 20th with a different therapist. Fingers crossed!

Paperwork

I'm fighting a never-ending battle with paperwork. Applications for services to fill out, permission slips for school, parent teacher conference scheduling, reports from occupational therapy, speech therapy, school, the Nisonger Center, to be copied and distributed to all the other places, intake paperwork for the Franklin County Board of Developmental Disabilities and for the Nationwide Children's Hospital Autism Center, thick envelopes of forms and questionnaires to be filled out and sent back. Then we have to make sure we keep copies of all of these papers, and keep them organized and in some safe place where no one will get to them and make paper airplanes or fine works of art from them. And there's always more paperwork to deal with in some way. Filling, copying, delivering, archiving. Today, Joseph's parent-teacher conference form was due, I found myself filling it out at the breakfast table.

I desperately need more organization in my life. Organization and time management have always been one of my greatest weaknesses, and now they're what I need the most (aside from patience and hope).

I guess this post is about Speech Therapy :)

I feel like I need to post something, but I don't think I have much to say. Which bothers me, because I want to be able to say there's been progress.

Joseph hasn't gone to speech therapy since school started. The last session before school started, I sort of got chewed out by the ST for not working enough with Joseph at home on PECS and I haven't wanted to go back because I can't honestly say that I've fixed the problems yet. When we started Joseph in the social skills group at the Hilliard Close-To-Home branch, it was during his old ST appointment. We got put back on the waiting list, and now when they call with an appointment, we just don't take it.

The idea is that we give Joseph this PECS book, and when he wants something we teach him to give us the card with the picture representing what he wants on it. When he gives us the card, we reinforce that verbally, (ie, Oh, you want a Banana? Here's a Banana!) and eventually he mimics that. In the beginning, it worked to some extent, mostly with food and drink stuff.

The problem is (and I'm pretty sure I've mentioned it before) Joseph always seems to be able to get what he wants. He prefers that we get him a drink, but if we don't he just gets the milk or juice and a cup and he pours it himself. The kids have so many toys that he just gets what he wants. We don't have a locking cupboard with all of our toys neatly put away like they have in the ST office. If he doesn't have to go through us to get something, then he's not going to use the PECS book.

So until we have a lock on the refrigerator, pantry, and toy box, I don't feel like I can go back to speech therapy. I just don't think toddler locks are going to cut it on the fridge. And frankly I'm not sure we could afford even that small expense anyway.

But now here's where it gets interesting. Joseph has been in school for four weeks now. And his speech has progressed more than the whole time we were trying to use PECS with him at home, and taking him to weekly ST appointments. So I'm questioning the efficacy of PECS for Joseph. Maybe we should be doing something else entirely.

Maybe I should have told his ST all of this instead of just avoiding her out of embarrassment. I don't exactly blame her. She was frustrated with me, and she has in the past always been very nice. I'm sure it wasn't typical of her. Maybe she was having a bad day. I don't feel I can tell her that I don't think PECS is right for Joseph at this point, we haven't really applied it the way we were supposed to, and we haven't been able to afford the $70 book she told us we should read. I KNOW that we know Joseph better than she does, and we're supposed to be his "best advocate" but I don't FEEL that way. If I was in her place, my response would be, "Well, maybe it's not working because you're not applying the system properly. You're not trying hard enough."

I think I need to consider what my priorities are for Joseph, and then we can figure out a plan. Right now, I have two goals for him: teach him how to communicate with us, and give him the skills he needs to learn on is own. In other words, teach him to listen, talk and read, preferably in that order but maybe not.

I guess I had a lot to say after all. I would like this blog to be many things. A way for people who care about my family to keep up with Joseph's treatment and progress, a way for other parents of children with autism to read about what we're going through so they don't feel as alone, a way for other parents of children with autism to offer us advice, but first and foremost as a way for me to process and organize my own thoughts and feelings, and I think it's serving that purpose today.

This Week...

Not a lot to say this week about how I feel. I feel like we're finally starting to get back to normal. It's not like the diagnosis changed anything in our family. Joseph is the same kid he was the day before, we expected the diagnosis. In any case, we're getting into the rhythm of school and therapy session. I even went out and shot a job Friday, so it's good that I'm finally doing some work. I am still full of worries, particularly about what Joseph's future will be like. But only time will tell. I'm seeing his speech improving, so I'm optimistic. I want him to catch up, learn to talk and read and be mainstreamed while he's still in elementary school. I don't know if that's a realistic goal. I guess I need to talk to his IEP team about that.

Last Saturday, Kristy and I went to a parents support group organized by Susan Richardson, who I had been put in touch with my an old friend of mine. It was a small group, but I think it was very beneficial to us and I'm looking forward to the next session. I have a lot of hang-ups and insecurity for various reasons when talking to strangers, but when I'm talking to another parent of a child with an ASD, I know that we have a connection that transcends all of our other differences, that this person has a better idea of the chaos, challenges, fears and rewards in my life than anyone else possible could fathom. I hope to meet more autism parents from Columbus there next time! I will post info when it's available.

Joseph had a good, if uneventful week at school. He's enjoying his social skills group and making progress in OT. He's now cutting straight lines with real scissors, though not along the lines they draw on the paper for him. Before he would just snip the edge of the paper and then move down to a new spot and repeat. They also said his writing grip is improving.

We went to the Autism Harvest Festival this morning at Leeds Farm in Ostrander (between Marysville and Delaware). I almost didn't take the kids, because first of all it meant getting up at 7AM on a Saturday (it was from 8AM to 10AM, and a half hour away), and second Kristy had to work so I had to take the kids by myself. While Maria tries (and is trying) she is not the best at cooperating, particularly when she gets excited. But she had a great week at school, so I thought that if nothing else, she deserved the chance. So we all got up at 7AM and the kids and I drove out to Leeds Farm. They had an awesome time. They fed goats, pet baby goats, went down big slides, did the hay ride, played with Tonka trucks in a giant sandbox full of corn, bounced on an enormous balloon buried in the ground, drove go-karts, and Joseph went on the kiddie zip-line 3 or 4 times (I think that and the corn were his favorites). I think this is an annual event that Leeds Farm holds for families with autistic kids. I'm really looking forward to going again next year, hopefully with an extra adult of two so I can take some photos of the kids. If you've got kids, I recommend visiting them. They have pumpkins for sale, the kids will have a great time, and they put on this event entirely free for us, so it would be great if you can help support them.

This week, we're focusing on creating order and security in our home to make it a better learning environment for Joseph. Securing the refrigerator and pantry so he cannot help himself to food and drink, pruning the kids' collection of toys and securing them so he must ask for them, and putting some kind of locks on our exterior doors that he will not be able to reach because the day is fast approaching when he will be strong enough to move the things we put in front of the doors to keep him in. These are three things we've needed to do, and been meaning to do, for months now but we've not gotten around to it. I think right now, developing his communication is our #1 priority, and making him depend on us for access to the things he wants is going to be the necessary first step in getting him to speak to us. So we will do these things and get caught up to where we should be with PECS and then get back to regular speech therapy sessions.

The Wilbarger Protocol

After Joseph's initial evaluation by the occupational therapist at Children's Hospital, I was given information about sensory integration disorder and sensory diets. I read it, but wasn't entirely sure how to implement it. More recently I asked for clarification on the sensory diet, how to structure one and implement it. Last week they had some new photocopies for me, including some pages on the Wilbarger Protocol, more commonly known as "brushing."

At first I didn't understand why I would want to do this and what the benefit would be. Simply, one uses a surgical brush to brush the child's extremities and back, and then "compress" the joints. It's a ritualistic process, and is essentially a sort of massage, systematically stimulating Joseph's senses. As I read more about it I learned that it is supposed to calm him and reduce hyperactive tendencies, which is something that Joseph needs desperately.

We've not yet been able to get into the every two hours schedule that is recommended. While school starting has helped some sort of routine congeal, we're still not great with adhering to a regular schedule. But we've been brushing him in the mornings before school, and when he gets home at lunch time, then again when Kristy comes home from work, and finally just before bed. He sometimes struggles a little, not because it's unpleasant for him but because he doesn't want to sit still. But generally, he likes the process and will even walk with us, unguided, to our bedroom when we tell him it's brushing time. In the last week I think he's really started to mellow out. He's less wild, better able to focus, and more likely to sit still. I'm looking forward to seeing what effect the brushing will have on him over a longer period. I'm also going to email his teacher and see if they have anyone available there who is trained in how to do this that might be able to administer a mid-morning brushing.

If you have anything to say about brushing, particularly any helpful tips, please leave a comment.

The Week in Review

I almost forgot to make my Friday post here. Fortunately, I remembered at dinner.

This week, Joseph struggled with me every morning when it was time to get on the bus, which I don't understand because last week he was all about it. The driver and aide said that as soon as they get around the corner, the crying ceases and he's fine. I've got gotten an update from his teacher this week, she had to leave town Wednesday because he father is ill.

Thursday Joseph went to his first social skills group session, which I wrote about in my previous post. Today he had this third OT session. I asked them last week for more details about the whole sensory diet thing, and this week they had some handouts prepared for me, as well as a surgical brush for "brushing," which they showed me how to do. He seemed to really like it when they demonstrated, and when we left afterwards he screamed and thrashed less. Also at OT, he's been working on cutting straight lines with scissors, apparently he struggled with getting his wrist in the right position. This week, he did it perfectly, even cutting along the lines they drew on the paper for him.

As for me, I think I'm feeling a lot better. I've been on Celexa for I think three weeks now. I have a family history of depression (that's putting it mildly actually) and finally went to the doctor and asked for antidepressants. The side-effects have been minimal. A couple of days ago, I was thinking that it's starting to help me feel just ok, not good or happy, but not crushingly depressed either, which I have been off and on for the last six months. It's supposed to take 4 to 6 weeks before it really starts working. Today I actually feel pretty good. I'm not sure how much is the drug, the fact that we haven't had any utilities shut off this month, or just that I'm getting out of the house more and being more active with the kids. Oh, and in the last couple of weeks I'm eating less and using less sweetener in my coffee. Two teaspoons was just too sweet anymore. For dinner tonight, I made myself four tacos, I only ate two before I didn't want to eat any more. So maybe I'll lose some weight now too.

Maria is still struggling at school. Today was a "good" day. She left the classroom twice without asking to go to the restroom, and screamed when another student took some plastic food she was playing with. She's also having lots of trouble on the bus. We're going to work on sitting still. First, at home in the quiet, then out in public and in fun places, like at the park or the McDonald's playground with other kids running around her. I'm still very concerned. I had ADD when I was a child, though I didn't receive treatment for it and didn't know it until I took a psych class in high school. It caused a lot of behavior problems in me. It is having a similar effect on Maria, and I'm afraid it's only a matter of time until she hates school as much as I did. Her teacher is consulting with people at the school to determine what's causing her difficulty and what sort of intervention they can provide.

I'm trying to be optimistic, but I can't help feeling like I'm broken and I've passed on my own 'challenges' to my kids. In darker moments, I feel like God didn't want me to have kids at all. Kristy miscarried our first son at 21 weeks, a year before Joseph was born, the doctors weren't able to find a cause. Sometimes it feels like that was supposed to be a hint.

In spite of all that depressing stuff, like I said, today I feel good. I hope I can maintain it.

Social Skills Group, Speech Therapy

Joseph went to his first session in a social skills group run by Children's Hospital this afternoon. It's facilitated by an occupational therapist and a speech therapist. I didn't get to observe the session, but it was Joseph and two other boys. The other two were pretty sedate, particularly compared to my little ball of chaos. Joseph apparently really enjoyed it. They were impressed that he drew a face on these little foam pumpkins the kids decorated. He even drew triangles for the eyes. :) They also said they heard him speak in complete sentences. Which is news to me, I've still only heard him do that once. I sometimes think he's holding out on me, though I can't imagine why.

The social skills group meets during his previous speech therapy time. We can move speech, but I think we might take a break from it for a while. We're having trouble getting our house reorganized how it needs to be for PECS to work. Joseph has too much access to everything, and most things, if he can't get us to get it for him, he will get it himself. In order to make him use the PECS cards (or talk, for that matter) he needs to be forced to ask us for things. Why talk when you can scale the cabinets and get your own banana? Which he can, and does.

Saturday, Kristy and I are going to leave the kids with Celia and go to a support group meeting in Hilliard. It will be nice for us to do something together without the kids, even if the activity itself is defined by Joseph and his disorder.

How I'm Feeling

I'm over the shock and upset that set in after Joseph's diagnosis last week. We've been reassured by his teacher that he is very intelligent, and in no way mentally retarded. For the last 7 days, I've ate, drank and slept autism. Reading web pages, subscribing to blogs, building networks and engaging other autism advocates on Twitter, downloading and watching hour after hour of videos. Autism and how it changes what I need to do for my son is probably the first and last thing I think of every day. I'm still afraid that I am not strong enough, but I'm going to do my best, and I know that if I need help that I will get it somehow.

But right now, I need two things:

First, I need to spend some daddy-daughter time with Maria (5). Normally, I would take her to see a movie at Cinemark or something. It used to be a reward she got on Saturday if she had a good week, but she's been really rotten this week, refusing to follow instructions, blatantly disobeying us, doing silly things like getting into the pantry and eating peanut butter out of the jar and leaving it open. Maybe she senses how much we're worrying about Joseph right now and she's trying to get our attention by being bad. My initial inclination is to not reward her with a movie because of her behavior this week, but now I'm reconsidering that. Maybe some quality time is exactly what she needs to behave better. Kristy's been sick with kidney stones, migraines and assorted feminine problems and Joseph is getting all of my attention and that's not fair to Maria. Yeah, I think I'll take her to a movie even though she's been a brat this week. :)

Second, I need a break from autism. I need to spend a day, or even a few hours, not thinking about autism. I don't even feel like taking photographs right now. If I got a call to do a job, I would probably turn it down. Maybe that's the exact opposite of what I should be doing, maybe I should be trying to work more, but I'm concerned about my stress level, and my ability to concentrate. I'm very intense when I'm shooting. Anyway, yeah, I need a vacation. Even for one day. But financially, for the moment, that's just not happening.

I'm doing better, we all are, but if you're the praying sort, please pray for us.

E-mail from School

From: Lxxxx Xxxxx [mailto:xxxxx@dublinschools.net]
Sent: Thursday, September 02, 2010 4:33 PM
To: joseph.harris@xxxxx.net; kristy@xxxxx.net
Subject: library

Hi!

I wanted to let you know that Joseph really enjoyed going to the school library yesterday & listening to Mr. P read a story...he sat on my lap and looked at the television (the book was projected onto the tv screen 7 watched Mr. P (he's very animated) and laughed. At one point, the looked over at the friend that was sitting next to him and gently brushed her hair, then lean over and gave her a big hug and a smooch on the cheek :-)

[I received some smooches on the cheek today too :-)]

Next week, we'll be able to check out books (the kids weren't in the computer system yet so we couldn't do it this week).

He participated much more during circle today...let us help him do the hand motions to the songs - got some good eye contact during this too! He was also excited to put his name card up on the board for "Who is here today?" He also sat and looked through several books with me and repeated (verbally) many of the pictures we were pointing out on the pages. In his backpack is the art we've been working on of all his friends at school (their pictures & names) -he was repeating their names with me today...might be fun to hang up somewhere at home and continue to refer to it....he seems to be developing more interest in his peers....

Great first week! Joseph should be super proud of himself!! I know we're excited!

Have a great weekend!!

Lxxxxx

The First Week of Pre-school

I just found out that Joseph has finished his first week of school. Apparently there's no AM pre-school on Fridays. That's news to me, but that's ok.

So, the first week of school. On curriculum night, Joseph's teacher told Kristy that he is still resisting transition, but he's already doing better at sitting still for circle time, and he's making eye contact. The other day, he made eye contact with her from across the playground, ran to her and gave her a hug. :)

After he got home from school today, before his sister left for afternoon kindergarten, they had a small conflict and he did something that surprised me. Maria got a silly straw at school yesterday. She loves silly straws. But after dinner last night, she left Joseph use it to drink some milk or juice or something. Today at lunch time, she was in the basement and took a few minutes to come up when I called her. Joseph picked the silly straw up from the table and started drinking his juice with it. When Maria finally graced us with her presence, she saw Joseph using he straw and objected strongly. I told her that it is indeed her straw, but she shared it with him and doesn't understand why he should have to give it to her now. So I was going to let him finish his drink and then she could have it back. He finished his drink and left the table for a moment, so she took the opportunity to snatch it back when he wasn't looking. At first he didn't notice it was gone, he just went back to eating his spaghetti-o's. She noticed that he didn't noticed, and in true big-sister form, did her best to bring it to her attention, in between sips holding the straw up in front of her face. When he finally realized what had happened, he jumped up on his chair, held out his hand and shouted (pretty clearly), "Hey, stop, that's mine!"

This is a new milestone. Back in June, Joseph for the first time spontaneously verbally requested something, bringing me his cup and saying, "Juice." Since then, he still doesn't frequently use speech unprompted to communicate, but he's picked up a handful of words and short phrases that I think in his mind are single words like, "scuseme!" or "whatsthis?" This is the first time that he's apparently put together words to form a sentence.

I've heard from several parents of children with autism that one of the silver linings ASD is that what, for a typical child would be a small accomplishment like this, are magnified and that's so true. I will always remember sitting at my desk and Joseph bringing me his cup and saying, "Juice." And now I will always remember when he leapt out of his seat and shouted, "Hey, stop, that's mine!"

We're excited for week 2 of pre-school. We're looking forward to seeing what further progress he will make, and what surprise he will have for us next.

School Walk-through

This morning we went to see Joseph's classroom and meet the teacher and aides. They're all wonderful and Joseph loves the classroom. He was having so much fun that he threw a fit when it was time to go. We came home to have lunch and get Maria on the bus for kindergarten, when he wasn't allowed to go with her, he threw a fit again. Meltdowns are bad, but at least these show how excited he is about school, and that after the three weeks he rode the school bus to and from summer school, he remembers that the bus takes him there.

I filled his teacher in on everything since his IEP meeting in June, including our visit to the Nisonger Center. She said she doesn't think he's got any sort of intelligence problem either.

We also met his bus driver. It looks like I'm going to have to start getting up earlier. :( The bus is going to be getting here around 8:20, too late for Kristy to get him on the bus on the way to work.

We're leaving momentarily for his first occupational therapy session. I think he's going to enjoy that too.

How I Feel Today

I'm feeling a lot of things right now. I thought I was prepared and that diagnosis would be a relief, but it wasn't. I thought that I had accepted that my son had autism, and everything that entails, but I think I felt like he was still going to be able to lead a mostly typical life. I was certain that he would eventually learn to talk, and read and that he might have some trouble making friends, but he would manage to have a few, that eventually he would meet a girl and fall in love and start his own family.

Now I'm questioning all that. I question whether we're strong enough to be the kind of parents a child like Joseph will need to thrive. What if he can never be independent? We had wanted to have another child if we managed to get on stable financial footing. But now, even if we could afford it I would be afraid to.

I had behavior problems when I was young, and as an adult I've been struggling with depression, inherited from my father. Now our daughter is having behavior problems at school, and I'm afraid that my kids are doomed to the same depression that has been growing in me since I was 20. I feel like I'm broken, and because of that my kids are broken too, and that makes me feel terrible, both for thinking it in the first place and because it could be true.

I'm also questioning my own observations of Joseph. Yesterday, we told the psychologist that Joseph doesn't nod or shake his head to indicate yes or no, but today I think I saw him nod to indicate yes when we asked him if he wanted something. I don't feel like we're objective enough to answer the questions they ask us when trying to diagnose him.

I think most of all, I'm upset that they stopped the autism screening and diagnosed him, seemingly solely from the ADI-R, without the observation portion of the evaluation. I don't know what the other folks who were trying to administer the IQ test observed, or what their qualifications are. I don't know how much his behavior during the IQ test effected Dr. Lecavalier's diagnosis. In fairness, we didn't bring any of tis up when they asked if we had any questions, but we were in shock from being told that he thought our son could be mentally retarded.

I need to remember that he's the same mostly-happy little boy he was yesterday. I need to try to focus, figure out what I can do to help him and make that my top priority.

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.

A Diagnosis

This morning we took Joseph to the Nisonger Center at OSUMC to be screened for a study they are doing comparing two training programs for parents with autistic children. They had us fill out another questionnaire, then they took Kristy and myself to another room with the psychologist, Dr. Lecavalier, while they tried to administer an IQ test to Joseph. Dr. Lecavalier went through a big thick booklet of questions (I forget what it's called), and then went through the diagnostic criteria for Autism from the DSM-IV. At that point he said that he thought Joseph does meet the criteria for Autism. We took a break for lunch, and when he came back he told us that because Joseph's speech is so limited, they were going to stop the screening at that point. He said he was giving Joseph a diagnosis of autism, which we had expected. He also suggested that Joseph may have ADHD, but the surprise came when he told us that he thought Joseph may have impaired cognitive function (mental retardation).

That was a shock, we were totally unprepared for that suggestion. We really don't think it's true. Dr. Lecavalier only saw Joseph playing for a moment when we went back to have lunch and he didn't really interact with him. Joseph was uncooperative during the IQ test, Kristy was there for some of it, she said that some of the things they were asking Joseph to do he was capable of, he just wasn't following instructions.

I think we're still stunned about this last bit. Kristy's a little upset. We are already on a waiting list of the Autism Center at Children's Hospital. So we'll see what they say. I thought that today would give us some kind of certainty and peace, but I feel just about as uncertain about all of this as I did before.

So... Yeah.

The Impending Screening

Joseph's screening at the Nisonger Center is tomorrow. As it gets closer, I'm finding myself more apprehensive.

We've spent the last 8 months deciding that Joseph has autism, redefining our family as one with an autistic child, ourselves as parents of a child with autism, meeting other parents of autistic children, building networks, starting a blog. About the only things we haven't done are join a support group and buy a bumper sticker.

I shouldn't be nervous. We're already prepared for the worst case scenario, any surprise should be good news, right? So why am I nervous?

At the Park

Today was Joseph's sister Maria's first day of Kindergarten, so after the bus picked her up this afternoon, Joseph and I headed to the park. There were only a couple of other kids there. Joseph ran around randomly, darting from one part of the playground to another, did some climbing, some sliding, then he found himself near two other little boys. One looked like he was about the same size and him, the other looked like his younger brother. They collided going down the slide, giggled, then the older boy pointed at something on the other side of the playground and said, "Let's go over there!" And then Joseph did something remarkable, he pointed in the same direction and then took off running with the other two boys, babbling with excitement. They played together for 10 of 15 minutes, until their mother told them it was time to leave.

This shouldn't be a remarkable event, but it is. Joseph has never played with other kids like this before.

He'll be having his screening on Wednesday at the Nisonger Center at OSU Medical Center.

Occupational Therapy Evaluation

I took Joseph for his evaluation by the occupational therapists at Children's Hospital today. Kara, the OT, started with some fine motor tests. She had him draw some straight lines on a paper. She tried to get him to draw a +, but instead he wanted to scribble. She drew a circle, and instead of drawing his own circle, he draw eyes, a mouth and ears on hers. She had him string some beads on a string, tried to get him to stack a block on top of two others, like a bridge, but he wasn't interested in doing that. But he was happy to stack all the cubes in one tall stack. She tried to get him to unbutton and rebutton some buttons on a piece of fabric, but once again he didn't seem too interested in trying.

Next Kara observed him in a sort of in-door playground while I filled out yet another questionnaire about Joseph's habits and behavior. Joseph showed her what an excellent climber he is, and what a fast runner. I felt so bad because he kept running over to where other kids were working and interrupting them.

When she was done observing him, she told me that she was recommending that Joseph have regular occupational therapy and she gave me some papers describing a "sensory diet" that we should start working on with Joseph. She said that his behavior, the inability to focus, climbing on things and then leaping off without worrying about falling, and the way he moves indicate that he's starved for certain types of sensory input. This would totally explain why he sometimes bites himself. We've got a list of activities that will stimulate different types of senses, and if we do these things with him on the right schedule then it should help him focus at other times, to "normalize his arousal levels". At least that's my understanding. This is all new to me, I didn't even know what occupational therapy was, so I've got a whole new vocabulary to learn before I'll be able to explain it well.

I feel like we're learning something important here that will help us help Joseph. I had read that people with ASD tended to have sensory processing issues, but I didn't (and still don't really) entirely understand the implications of this, or how it manifests specifically in Joseph. But now I'm optimistic and confident that we will, and understanding this will make it easier to deal with Joseph and help him.

Getting ready for school

We just realized that school starts in about two weeks. They went to summer school for three weeks, riding to and from on the bus and everything, but this is the beginning of their first proper school year.

They don't have a special ed preschool program at our area's elementary, so Joseph and Maria are going to be at different schools until he gets to Kindergarten. And we just got a letter letting us know that Maria's in the afternoon kindergarten session. I don't recall if we've been told if Joseph is going to be in the morning or afternoon session, but this could get complicated, with two bus drivers and two sets of school administrators and two sets of school activity calendars to keep track of.

Not to mention that this is the beginning of a new phase in our lives and I'm apprehensive about it.

Joseph's evaluation at the Occupational Therapy department at Children's Hospital is Monday. We got the paperwork sent back to the Children's Hospital Autism Center and we were told to expect to hear back from them in 5 to 6 weeks. We also should be hearing back from OSUMC's Nisonger Center any day now. We're just waiting on all these things now. I'm tired of waiting.

Untitled

This update will be a little more mundane, they can't all be profound, can they?

We made more PECS cards for Joseph, he's using some, and not using others. But I feel like we're making progress. We need to be more persistent though, and make him say words that we know he can say. Sometimes he will just hand us the Drink card and not bother telling us verbally, but we know that he can. I think we're supposed to insist, holding out until he says it out loud, but we can't always withstand his temper-tantrum when we do that.

A couple of days ago, Joseph was dancing to the theme from Animaniacs (along with Spongebob, one of his favorite videos) and as he came out of a spin, he fell into the edge of the coffee table right below his eye, giving himself a spectacular shiner. The swelling and discoloration has finally started to go down this evening.

And now, I present Joseph singing along as he watches the 'This is Halloween' sequence from The Nightmare Before Christmas, recorded from the webcam of the netbook on which he was watching.

Connections at church

On Sunday we took both of the kids to a different church than usual. We've been sporadically attending St. Peter's, which is right around the corner from us and their latest Mass on Sundays is at 11:30. Right down the road though, is St. Joan of Arc, where my family went for a sizable chunk of my childhood, and they have a 12:30 Mass, so we decided to give it a try. Usually, I take Maria to Mass, and Kristy stays home with Joseph, but we want to be able to all go to church together, as a family.

Shortly after we settled into the "crying room" a lady poked her head in through one of the two doors and said, "If anyone needs to get out through this door, just knock on it. I'll be sitting against it on the other side to keep the autistic boy from running out through it." Kristy and I looked at each other with bemused expressions and I asked her, "Who told her?"

A couple of minutes later, a woman came in with a boy carrying a Thomas the Tank Engine backpack. He looked like he was around 7 or 8 years old. I realized that the woman on the other side of the door was referring to this child, not mine (of course). She got out some dry-erase markers and a couple of lap-sized white boards and her son spent most of Mass sitting on the floor, happily drawing. Joseph, on the other hand, spent most of Mass screaming and trying to get away from us. He even bit Kristy on the shoulder repeatedly, which is not typical for him. Joseph got loose at one point, and Kristy explained to her that he's got autism too. She said that she recognized the sounds he was making.

During Communion, one of the other parents from the crying room was in front of me, and I noticed that her son was holding his hands over his ears and looking distressed. Oh, and during Communion, Joseph was screaming so loudly that I could hear him from the front of the very large church, through the glass that encloses the crying room, over the cantor and accompanist. It was rather impressive actually.

After Mass, I found out that out of the four families in the crying room, three of us had kids with Autism. The first mother asked us if this was our regular Mass, because she is usually by herself in the crying room and, she said, "It's good to have someone else who, you know..." the other mother and I looked at each other and chuckled and said, "Oh yeah, we know."

Once we finally have a diagnosis for Joseph, and it's all official, I think we're going to see about starting a group at church for parents of kids with autism spectrum disorders. I know that the couple of times that I've been able to talk to other parents about our kids, it's made me feel so much better. It sounds like just about every parent of a child with autism feels isolated and alone, but with 1 in 100 kids having an ASD, there's no reason for that. I don't want to join any groups yet, because I don't like saying, "I think my son has an autism spectrum disorder." I think I'm just waiting until I can confidently say, "My son has Autism."

Progress towards diagnosis

We finally heard back from Nationwide Children's Hospital on the referral from Joseph's pediatrician. They asked the same questions that everyone else has been asking, I gave the same answers, delayed speech, stereotyped behaviors, etc. They're sending a packet of papers for us to fill out, then it will be 5 more weeks before they will be seeing him.

The waiting is terribly frustrating.

Not to put all our eggs in one basket, we're still on a list for the study at OSU Medical Center's Nisonger Center. That process would include evaluation and diagnosis, then training for Kristy and myself on how to deal with Joseph.

We've been waiting for so long at this point, I think it would be a relief for him to be diagnosed with an Autism Spectrum Disorder.

Report from Summer School

I just spoke with Joseph's teacher from summer school, and she had a lot to tell me and many suggestions about how to help Joseph.

She said that visual timers and Boardmaker pictures helped him transition from one activity to the next more smoothly, and that he was all about routines. Plus the Boardmaker pictures allowed him to tell them what he wanted to do, and gave them a way to tell him that he could do that after he did what they wanted him to do. Also, she said that he responds well to sensory stimuli, they were able to keep him sitting still and focused better using things like the weighted vests and by touching him on the back and head. She suggested giving him Play-Doh to keep him sitting still while we read to him, which has always been a huge challenge for us.

We're even more looking forward to him starting pre-school at the end of next month. Our experiences so far with the Dublin school district have been very encouraging.

We're going to try this Play-Doh recipe.

Speech Therapy

It seems to me that most of Joseph's problems are being caused by his inability to communicate his needs and wants to us, so speech therapy is possibly the most important thing we're doing with him at the moment. He's been going to half-hour speech therapy sessions at Nationwide Children's Hospital since May. His mother was taking off work every Thursday taking him previously, but we had his cousin at our house today to watch Maria, so I was able to take Joseph to his therapy session.

Joseph's speech therapist has been working with us to introduce Joseph to the Picture Exchange Communication System (PECS). You may seen it in films, I think I saw the boy with autism in Mercury Rising using something like it. Basically, there are a series of pictures on cards that he can show us to tell us what he wants. Then when he initiates that request, we verbally reinforce it by saying, "Oh, Juice! You want Juice! Here's a glass of Juice!" It's already helped him learn to verbally request cookies and juice. I think we need to expand his vocabulary and add more cards though, which his therapist gave me the go-ahead to do this morning.

Additionally, she said that he was much more focused than he has been in the past, when they struggled to keep him sitting down and engaged. She hasn't seen him since before summer school, which was three weeks long and ended last week. So I think summer school has made a big impact on his behavior and ability to sit still and focus as well.


This video shows Joseph using a PECS card to request an additional peg that he then sticks in the little peg-board. This is the most basic level of PECS, which has a strict routine for progressing through the system.

Also, the video shows the compulsive behavior of sorting the pegs by color, a behavior considered symptomatic of Autism Spectrum Disorders. First he fills all the holes, then when he has more pegs left, he sticks the pegs on top of pegs of the same color. While building the first layer of pegs, he only shows minor concern with grouping like colors next to each other. At 3:50, he removes a red peg he's placed, and puts it next to another red peg. But yellow, purple and orange pegs are not placed next to each other.


In this video, we test whether Joseph will choose the correct card out of multiple, in order to request the puzzle he's playing with.

We're going to attempt toilet training soon, as soon as we can get some rubber pants! So you have that to look forward to reading about. :) I hope it's quick and painless!

Fireworks

We took the kids to the park for fireworks last night. Joseph had seen fireworks before, last year we saw the fireworks in Port Clinton and they were much closer, bigger, louder and brighter. I'm aware that ASD comes with sensory problems frequently, but we're still "feeling" that out.

Last night, he was only a little squirmy before the fireworks began. But once they started, he was screaming and frantically trying to escape his mother's grasp. Once she wrapped him in a blanket, he seemed to calm down some. By the end of the show, he was clapping. We don't know if he was upset because he wanted to try to get closer to the fireworks, because he wanted to run off and frolic on the grass, or if the display was overloading his senses. Typically, (if I understand it correctly) he seems to be trying to stimulate his senses, compensating for a lack of stimulation by biting his arms or banging his head softly on walls and bookshelves. I don't know if people with ASD experience both lack of and over-stimulation at different times though. If only he could talk, he could tell us what he wanted. But that day will come.

Joseph, before the fireworks started.

A short video

One of my favorite things that Joseph has been doing is he sings and dances to the Animaniacs title sequence. Recently, his performance has improved a great deal so I need to make a newer video. But in the meantime, here's one of the first attempts at capturing it.

Another Autism Dad - An Introduction

My name is Joe. I'm a professional photographer, student and for the last 2 years or so I've been the primary care-giver for my two kids, Maria (5) and Joseph (3.5). Last autumn, my school schedule required me to put the kids in daycare for a few hours a week while I went to some classes that couldn't be coordinated with my wife's full-time work schedule, and that's when our adventure began.

Joseph wasn't talking when he started at daycare. We kept hearing things like, 'It's ok, younger siblings start talking later." or "Boys develop their speech more slowly than girls." So I wasn't terribly concerned. Because Maria was one and a half when Joseph was born, I didn't take them out much. I was always concerned about having Maria run off and not being able to chase her with a newborn in tow, or one of my greatest fears, both of them pooping in their diapers... AT THE SAME TIME.

One of the first times I was really confused by Joseph, I had arranged a rare playdate with a friend who had a son that was a month or two younger than Joseph. My friend's son talked to his mother. He interacted with her. They played together. I thought that he and Joseph would play, but instead Maria played with my friend's son, and Joseph sat underneath the jungle-gym playing in the mulch and occasionally trying to run off to explore the park beyond the playground.

When I went to pick the kids up from their first day of school, I had expected that Maria would have some behavioral problems in the new atmosphere. Upon entering the school, I got to Maria's classroom first, where I was told that everything went fine. Then I got to Joseph's room, where his teacher looked a little frantic and told me that he had been scratching himself, refused to lay down at nap time, entirely ignored any attempt to verbally correct his behavior, put his head in the bookshelves and knocked it against the shelves, CLIMBING the bookshelves. I was totally off-balance, I hadn't expected this. We thought perhaps he needed time to acclimate to the classroom environment. But waiting didn't seem to help much.

In November, when Joseph was just 2 months away from his third birthday, we took him to get his hearing checked. They said it was totally normal. We had his speech evaluated and they said he had the speech level of a one year old. When we got these reports back, we told his teacher about them. She suggested contacting  the state to have him evaluated, but she wasn't particularly specific.

In January, shortly after his third birthday, I called the department to which she had referred me, and they told me that they only handle kids under three years old, and that he was now under the jurisdiction of our local school district. By this point, we had been given more information about Autism Spectrum Disorders. I had found the M-CHAT and reviewed the DSM-IV section on ASD, and we thought that this totally explained not only the speech, but the lack of interest in socialization, and all these cute little idiosyncrasies that he had. We knew that sorting things and lining things up in rows was a "stereotyped" behavior, but we didn't realize that so was walking on tip-toes, and only last night we watched a YouTube video of the "hand flapping" that we've read about and we realized that he does that sometimes when he gets excited.

At this point, Joseph has been in weekly speech therapy since May, and Dublin Schools has accepted Joseph into their special needs preschool program. He just finished three weeks of summer school yesterday. He's already talking more. Just a couple of weeks ago, he brought me a cup and said, 'Juice." This, as far as I can remember, is the first time that he has spoken when he was NOT simply repeating something that was said to him. Usually he just hands me the cup and expects me to put something in it for him to drink. A week ago, he was trying to walk through a crowded kitchen of adults and he said, ''Scuse me!' We're very optimistic about his progress in this short period.

We're on a list, waiting to be called by OSU Medical Center for a research study where they will evaluate Joseph and officially diagnose him with an ASD (if that is indeed appropriate, which we're 95% sure it is) and my wife and I will participate in a program for training parents how to deal with children with autism.

I've occasionally written about individual experiences I've had with Joseph on my Facebook, but I feel that a dedicated blog for the subject is called for. Hopefully, I will update it regularly and don't abandon it as I have my political blog. :) Hopefully, it will help someone else. I know that one of the most comforting experiences I've had in the last 6 or 7 months was talking to the mother of a 4 year old girl with PDD-NOS, comparing symptoms between her child and Joseph. They had so much in common and it made me feel like I wasn't alone.

Coming up, now that summer school is over and Joseph will be at home all day, we're going to attempt toilet training. I'm sure that I will have much to write about it. :)