May is the Month for Meetings

As I expected it would be, this month has been filled with meetings. We have just one more big meeting (hopefully) coming up on the 20th, and the others have really been preparation for that.

This week, we had Moe's annual Individualized Family Service Plan (IFSP), which also served as his official exist from Early Start services. This is the meeting where we discussed the results of his latest assessments, reviewed our team's recommendations for ongoing services and discussed the transition to the school district. He will continue to receive services through his birthday, but the day after memorial day, he's cut off from his current set of services. I'm jumping for joy and trembling with fear at the same time.

As I've discussed before, it is tough to quantify a kid's level of ability based on standardized tests, especially when you're dealing with an autistic kid who may or may not feel like performing for you on any given day. So I'm trying hard to take the results with a grain of salt. That said, our team, especially our SLP and OT who see Moe every week, know him well. Their written reports are pretty accurate views of where he is now, and have given the school district (in addition to their own assessments) a good picture of where he is. In a future post, I'll try to paint that picture here.

On May 20, we have our Individualized Education Plan (IEP), which will spell out the services provided to us by the school district. That document, and the goals within it, is our contract with the school and is critical to how we move forward with Moe. All parties, including us, have to agree on what is in it, and it isn't binding until signed. Unfortunately, this can become quite a contentious process, often involving advocates and/or lawyers. So far, however, our school district has been very responsive and thorough in their evaluations. The psychologist has spent five hours with Moe, including one parent interview, two assessments and two ABA observations. Although she hasn't given me any details of their proposed plan, she indicated to me this week that her assessment of Moe is very much in line with what she read in the IFSP, as well as Dr S's latest report.

Incidentally, Moe also qualified for ongoing regional center services. They no longer provide the ABA or speech services, but do offer some assistance with things like respite care, day care, diapers after the age of 5 (Lord help me if Moe is still in diapers at 5), and behavioral consultation for specific problems that may come up over time. I hope we never have to use them.

One, Two, Three

Time is really beginning to fly around here. Jelly Belly turned 11 months old today, and I can hardly believe she'll be one in a month. One month after that, Moe will turn 3.

Moe's third birthday is a big deal. For one thing, it means that it will be one year since his diagnosis. It will certainly be a time for reflection on our journey through early intervention, how far we've come, and where we are headed. In more concrete terms, it means Moe ages out of Early Start services through the Regional Center (RC), and we'll have some decisions to make.

In California, once a child turns three many services become the responsibility of the school districts (SD) to provide. In April, he'll have his exit assessments from his current service providers and his entrance assessments for the school district. His new services will begin June 1.

In our district, which has a good reputation for special education services, all of the preschool classes are at one campus nearby. Once we know which class he'll qualify for (and I'm sure he'll qualify, at the very least under speech & language delays), we'll go observe a class. The change from RC to SD is a tricky one, because the SD only needs to provide services that will affect him from an educational perspective, whereas the RC is family focused, and responsible for the development of the whole child.

If we don't like what we see from the SD, or don't think it is enough, we of course have the option to find services privately. We can then pay out of pocket or try to get insurance reimbursement. (The latter is going to be difficult with our current insurance, but we're hopeful that new regulations under health care reform are going to force more insurance companies to cover autism services.) To that end, I've been researching our options for private preschools with autism programs. We're going to visit one on Wednesday.

The decision to send Moe to a special school would be tough. Not only will it be expensive, but I was really hoping he would be ready to go to a regular preschool, perhaps with an aide. But he is clearly not ready for that. I'm concerned he could get lost in the public program if he doesn't have one on one attention. He may learn to go with the flow, but I want to make sure we're bringing out all of his potential. These years leading up to kindergarten are crucial.

My best guess right now is that he'll go to the local preschool, hopefully 4-5 half days a week. He'll probably also get some speech services through the district. Then we'll likely supplement with social groups and possibly some additional one on one therapy, including some kind of ABA, extra speech and maybe OT. Our long term goal, of course, is that he's in a regular school (public or private) with typical kids, but we'll do whatever we need to do, one step at a time.

Photo by Zsuzsanna Kilian.

A New Plan

After we met with Dr. S, we started a small flurry of activity to try to get Moe some one on one therapies. We found out that the regional center (SARC) office has their staff meetings on Thursdays so we wanted to make sure that we got on the agenda for that week.

First, we had to fax the doctor's report to our service coordinator (SC) at the Regional Center. Second, we had to make sure all of the reports and recommendations made it to the regional center by Thursday's meeting. Moe had already been observed by the occupational therapist at school. A speech & language pathologist was also going to see Moe. We had to make sure that their reports, as well as the school director's recommendations, were completed and faxed to the SARC. It turned out that those reports were not actually going to be ready in time, but we encouraged our SC to make sure to discuss Moe at the meeting. They did.

As a result, the regional center sent their own psychologist to observe Moe at school. That happened on Monday. We had a phone call to review yesterday.

Everyone had talked to everyone else (including our Dr. S and the SARC psychologist). They agreed that Moe should have more individual treatments, so now he is going to have one hour per week of speech & language and one hour of OT. In addition, we are going to start sending Moe to the school 5 days a week.

We are hopeful that the one on one therapies are going to be really beneficial, espeically in helping Jeff and I know what we should be doing at home. Our only complaint about the learning center has been that it has been difficult to get a lot of feedback on how he is doing, and where we can be helping, so I'm looking forward to having a relationship with the therapists who will be working with Moe.

Our concern with the new plan (called an IFSP) is that Moe is only getting 2 hours a week of one on one time. Dr. S seemed pleased with the changes, but was a little vague. SARC agreed that if the therapists think he needs more, they can request more. In addition, if Dr. S does give an autism diagnosis, then more changes can be made.

So what's next? I'm working with SARC to get the new plan scheduled. We have our next appointment with Dr. S in 2 weeks.