Friday, August 27, 2010

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.

Thursday, August 26, 2010

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.

Wednesday, August 25, 2010

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.

Tuesday, August 24, 2010

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?

Monday, August 23, 2010

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.

Monday, August 16, 2010

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.

Friday, August 13, 2010

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.

Wednesday, August 4, 2010


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.