Feedback Meeting at Children's Hospital Autism Center

Sorry, I should have written about this weeks ago. I've been neglecting the blog, I'm going to try to update more regularly. I'm going to be publishing an update about the iPod and how that is going shortly (spoiler: it's great!)

After Joseph's assessment in December at the autism center, I went back for the feedback meeting to get their impressions. They have confirmed the diagnosis of autism, and are classifying him as severe. Their said this is not because of the severity of his individual symptoms, but rather because of the large number of symptoms he exhibits. They said that the symptoms seem to be slight, and they are optimistic that he will be able to overcome them. He wasn't entirely cooperative during the intelligence test, but when they threw out one anomalously low scoring category, his IQ is testing in the average range.

So here's our plan. We don't want to take him out of Dublin's schools, especially from his current teacher and classroom. EIBI, Early Intensive Behavior Intervention, which is derived from Applied Behavior Analysis, is considered to be the most effective treatment for kids with autism (in general, there are of course plenty of exceptions). But it requires 20 to 40 hours a week for maximum benefit. We could get that if we took him out of public school and sent him to a center like Haugland, Step by Step or Helping Hands or took him out of school and "home-schooled" him, which would allow us to use Ohio's $20k a year Autism Scholarship to pay for the aides to work with him. Or we can try to do it at home, after school, with the help of unpaid aides (Medicaid covers everything but the aides who do the actual therapy sessions), which is what we want to try to do right now.

The next step, they will do an intake assessment with Joseph at the autism center to begin designing his treatment plan.

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.

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?

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.