Wednesday, July 28, 2010

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."

Tuesday, July 20, 2010

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.

Monday, July 12, 2010

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.

Thursday, July 8, 2010

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!

Sunday, July 4, 2010


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.

Saturday, July 3, 2010

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. :)