Final Progress Report for the School Year

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

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

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

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

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

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

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

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

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.

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.

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.

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.

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!