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.