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.

Budget Cuts

One of our concerns when we first started early intervention (EI) was whether we could get appropriate services for Moe, given the California budget crisis. By law, California must provide appropriate services for all qualified children, but of course "appropriate" and "qualified" are squishy terms. We've been fortunate enough and pushy enough to get the right services for Moe.

At the end of January, I attended a parents' meeting with our ABA provider about budget cuts that are coming their way. I learned a number of interesting things at this meeting.

First, parents are having more and more success with insurance. It is always a fight, and often takes many months of appeals and reviews, but parents have been able to get insurance coverage for autism treatments, including ABA, speech and OT. The providers love when they do get insurance clients; they get better rates, fewer hourly caps, and can provide more services, especially with kids over 3. This is because health care providers are concerned with "quality of life" where school districts (who manage services after age 3) are only responsible for addressing issues that affect educational success. Our provider believes (or maybe hopes) that insurance is the future of autism coverage.

Second, I learned that many more parents than I realized are paying out of pocket for their kids' therapies, either entirely or to supplement what they are getting from the school districts. Many of the parents at the meeting were from an excellent nearby school district (not ours), but one that I'm told doesn't have great special ed services. I've heard good things about our school district, which doesn't contract with the center but provides their own programs. But until we see the specific program that we are offered, it is hard to tell. We're going to start looking at some of the other agencies around just in case.

Third, I learned that the Regional Centers and the School Districts are being much tougher with their definitions of "qualify" and "appropriate." Where 80% of our provider's clients used to be big (25+ hours/week) programs, 80% now get fewer than 10 hours. Their center-based program is filling up since the RCs are more likely to recommend a cheaper center than an intensive home program. This is what happened to us. Fortunately, we got second opinions and very strong hints from the center director that Moe needed more. We pushed to revise our IFSP, and we got more. But not everyone knows enough to push for that.

Of course, providing fewer services during early intervention is only going to cost the state more in the future. Kids who don't get services early on are more likely to need more help later, continued services into high school and adulthood, including job training, self-help skills training, home assistance, etc. With the rates of autism rising, this is a potentially big financial burden building for the state and the nation as a whole. But the state is not run like a business, with a long term fiduciary duty to its stakeholders. The state lives budget year to budget year, and our kids are the ones who are going to suffer. There may be a number of problems with insurance companies covering autism care, but they are savvy businesses, and likely to take a longer term view of the problem.

So far, state budget cuts have only affected my family a little bit. At Moe's latest IFSP, we had to get a denial of coverage letter for speech and OT services before the RC would pay for them. Our ABA provider has had to reorganize to brace for the cuts but our program was only affected a little bit. But as we prepare for our first IEP and transition into the school district in May, I have a feeling we're going to start feeling the crunch a lot more.

Monthly highlights

Once a month, we have a clinic with Moe's team. His entire team of therapists come over and we talk about what progress we've made this month and what new programs we're going to implement next month. A program is simply a new type activity or skill that we want to track. We remove ones Moe has "mastered" and add in the next set of things we want to focus on.

We start every clinic with our favorite stories or highlights from the month. I felt like we didn't make quite as much progress this month as in previous months. This month had two holiday weeks, so we didn't have nearly as much therapy time as usual. And, as I've written about before, the lack of structure during the holidays seemed to through Moe off a bit. But clinic is a good time to remind ourselves the progress we have made and regroup for the upcoming month.

Some of the highlights from this month included:

• Moe has really taken an interest in art projects. He loves to color at his easel, but also at the new table in his room. He played with finger paints for the first time (something he refused to do before), as well as stamps.
• After reading a book to Moe during speech therapy, he took the book and read it back, repeating some of the things we talked about in the book: "Bear is skating," "Bear painting," "Snowbear," etc.
• Moe has been taking a greater interest in Jelly Belly, imitating some of her sounds and actions, like blowing raspberries during the "Mouth Song."
• We've been working on word endings, and he's been getting much better at pronunciation. He'll often be "lazy" about how he says a word, but if we say it back, he'll imitate it. Jeff and I have heard him practicing his words on his own as well, like "horse," "fish," and "goat" with a real emphasis on the word endings.
• I've also been working more on signing with Moe. Because he seems to be picking up speech, we haven't been focusing on signing too much. But since I've been signing with Jelly Belly and we've been watching Baby Signing Time videos, Moe seems to be picking up some. The other day, I gave Moe some scrambled eggs to eat and told him they might be hot. He tried one, and then signed "hot." Our SLP loved this because it showed great receptive language.
• Moe is imitating a lot more speech, and not just single words. He says a lot of phrases as well.

Progress has been good. But we still have a long way to go. Things we're going to focus on this month are:

• Receptive language: making sure language has a communicative function and that he is processing and understanding the language that he is hearing
• Parallel play and "play with me" activities
• "Show me" tasks, to teach joint interest
• Responding to his name

This week we also had our first transition meeting with the school district. When Moe turns 3, his services will be provided by the school district rather than through Early Start. We now have a timeline for his next set of assessments and a date for Moe's first IEP meeting. Although we won't know until then what specific services they school district will provide, we do know what school he'll be attending and we have a general sense of the types of programs available. More on this to come.

A Diagnosis

Yesterday, we took Moe to see a developmental pediatrician. We didn't feel like the Early Start evaluators gave us a good sense of what was going on with him, and our pediatrician, Dr. G., recommended someone in her group.

Dr. S told us what I've known for quite some time in my heart. W is on the autism spectrum. Okay, she said she wants to spend some more time with just him, but she sees a number of "red flags." The writing is on the wall.

How do I feel about this? Honestly, I don't know. Scared for W and what his future holds. Scared for me and how much more my life will need to be dedicated to his care. Guilty for feeling that way. Anxious to find him the right therapies (the doc doesn't think the learning center he is in right now is the right place for him).

DH, Jeff, seems to be in a bit of a denial. He thinks Moe will catch up and be fine, and maybe he will. I want to be optimistic. Moe is only just 2, and early intervention is key. Jeff didn't talk until he was 3, and he and is clearly an intelligent, well-adjusted person who can dress himself and use a spoon. But I also want to be realistic.

So now we start working with our service coordinator at the regional center to try to get W's treatment plan updated. I'm still lost and confused in the world of IFSPs, and IEPs, and the whole thing. There are a lot of resources out there, but it is going to take some time and effort to find the right ones. Did I mention we have a newborn?

On the plus side, I now know what this blog is going to be about. It isn't a unique concept. I did one search for "autistic toddlers and nail clipping" and found a similar blog, Both Hands and a Flashlight. I'm sure there are a thousand others. But this will be our story, as beautiful and unique as Moe himself.