May 21, 2010

Our First IEP

Yesterday was our first IEP meeting. Overall, it went well, and everyone seems to be on the same page with Moe's strengths and areas of need. The meeting started with a discussion of the assessment report and the draft goals. We had received the report and draft goals beforehand, and I had reviewed them with our trusted SLP so we were ready to go right away. There were 14 goals, in areas from expressive and receptive communication to pre-academic skills.

Things started off a little funny. We were confused about the first two goals, and spent a lot of time discussing them. I think the group from the school was a little taken aback, and I think they were bracing themselves for a rough meeting. But once we got past those two goals, we had very little to say about the remainder. We changed the wording on a few, made some more aggressive and split out some goals into two parts to make them clearer. But overall, they were spot-on and picked up where our IFSP goals left off.

Then we talked about services, which is what we were anxious to discuss. This school is actually pretty incredible, offering a number of different special ed preschool programs right on one campus. The goal (and the law) is that your child receive Free and Appropriate Public Education (FAPE), and be placed in the Least Restrictive Environment (LRE). For example, maybe your child does fine in school, but needs some sensory breaks. Your IEP could be that your child is in a general education mainstream classroom (LRE) but is allowed extra breaks or fidget toys. Slightly more restrictive might be a mainstream classroom but with full time support and an hour of pull-out speech, for example.

This school offers programs for kids with cognitive disabilities (not Moe) and 2 and 3 half-day classes for kids with speech delays and/or social and pragmatic delays. They also offer a five day, full day, ABA-based preschool program. This is their most restrictive program and is reserved only for the kids who really need it. Unfortunately, Moe is one of them.

That said, we are lucky that such a program exists here. It is based on the Competent Learner Model, which I need to learn more about. Each child is tracked very closely and gets a daily report from the teachers. Speech therapists and occupational therapists "push in" to the classes. Moe will also get two "pull out" speech therapy sessions a week, one solo and one with a peer. There are only six kids in the class right now, and they are supported by one head teacher and two or more aids in the classroom as needed. The ratio is generally 2:1, though sometimes better, but not guaranteed. Being in a special ed classroom with an experienced teacher should be good for Moe. They will use visual schedules and picture exchanges and be familiar with processing delays and other characteristics of kids with autism. The goal of course would be to get him to one of the less restrictive classrooms in future years, but for now, getting him as many services as possible is the right thing to do.

We have two concerns. First is that the kids in this class do not have a lot of interaction with typical peers. They share recess with a typical class one day a week. Moe is just starting to notice what other kids are doing, so this could be an issue down the road. Our bigger concern, however, is the ratio. All of our therapists and our developmental pediatrician, Dr. S, recommended a 1:1 ratio to make sure Moe has adequate support. In this type of classroom with experienced staff, it might be okay, but we're not sure if we should push for more or what exactly to push for. Currently, he's not getting any specific behavior therapies, and we were assured that that is something we could add in as behaviors arise (we don't know what those might be since he hasn't started yet).

We haven't signed yet. We need to get the final version with our changes. We're also reviewing the plan with Dr. S to get her opinion and I need to circle back with our team to see what they think. We're going to observe the class next week and I think that will give us the best sense of whether we really need to push for the extra support for Moe.

Finally, Moe did qualify for Extended School Year (summer) session, so he can start right after his birthday. He'll have about 10 days of classes, then a week long break before summer session. Summer is a slightly shorter day and is only a month. Then there is a month break, so we'll probably continue our ABA through our current provider during the summer (with fewer hours) just to keep things moving along.

May 14, 2010

May is the Month for Meetings

meeting 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.

May 11, 2010

The necklace

IMG_2315 I recently bought a necklace that I wear almost every day. I bought it a few months ago on a tough day - one of those days that takes your spirit away, when you wonder if things are ever going to get better and all you feel is defeat. I needed something to remind me that tomorrow would be a better day.

So I went browsing on Etsy, and I found a necklace with some hand-stamped charms. There are beads the four colors of autism awareness, a puzzle piece stamped with my son's name, and a circle with the word "hope." As a bonus, the woman who makes the jewelry has two grandchildren with autism, and donates 50% of the selling price to Autism Speaks. When it arrived, I put it on a chain I had next to a small diamond heart my husband gave me a few years ago.

I'm not a religious person and I don't often pray, but I found myself envying those who have a strong belief in God to anchor them through tough times. Sometimes I'll see someone grab hold of a cross they're wearing on a chain, and I imagine them getting some supernatural strength from that physical reminder of their faith. I wanted a symbol that I could hold on to, literally, to give me a spiritual boost when I needed it.

For mother's day this year, I decided to get both my mom and my mother-in-law the same necklace. I thought it might help them feel more a part of Team Moe because even though they aren't here with him all the time, they provide invaluable support to me and Jeff. As you can see from the pictures on my mother's day post, they also really connect with him when they are here. I also know that although nothing will replace the hard work that we're doing to help him, Moe needs as many people as possible believing in him. Now, on the days when I'm not feeling as strong as I should, I know that others are wearing the necklace and can draw strength from that.

I have no affiliation with Stamped Under the Moon, and was not compensated for this post.

May 9, 2010

We love our moms!

I've spent a lot of time thinking about what it means to be a mom, how it has changed me, and how it hasn't. But instead of spending time today discussing my own journey through motherhood, I thought I would just say thank you to the wonderful mothers - now grandmothers - in my life. They have both been through a lot as moms and deserve great big Internet sized hugs today. (And flowers. And jewelry. And I should probably send something extra to make up for the teenage years.)

We love you!



Also, a big shout-out to all my mommy friends and fellow mommy bloggers out there. You are inspirations.

May 7, 2010

Resolving sleep issues

IMG_1956 Sometimes I play the "at least he's not" game. Kids with autism can have so many disparate issues, ranging from the ones people tend to be aware of, like speech delays and sensitivities to light or sound, to less apparent ones like digestive issues. When Moe was first diagnosed, his issues were social and communicative, but we would look across the spectrum and think "at least he's a good eater" or "at least he likes to be touched."

I've discovered that this is a dangerous game to play. For one thing, all kids, including spectrum kids, change so fast. As soon as I thought "at least he's not a hand flapper," he started flapping his hands. At first this really freaked me out, not because of the flapping itself but because I thought it was a sign that things were getting worse. But then the flapping would go away for a while and something new comes in. Sometimes he needs to chew a lot, sometimes he gets really manic and has a hard time settling down. These things come and go and although we employ strategies to manage them at the time, I'm learning not to read anything into any new behavior because it is likely to disappear as quickly as it came. Sometimes they return and sometimes they don't.

But lately we've been having an issue we've had trouble managing behaviorally. Moe has, from the time we did sleep training at four months old, been a good sleeper. He'd fall asleep quickly and stay asleep for a good 12 hours, with only the occasional exceptions for teething or illness. I'd always say "at least we don't have sleep problems." You can guess what happened next. A few months ago, Moe started waking up in the middle of the night. He wasn't upset, but we'd hear him in his crib, laughing. Not a normal laugh, but an out of control hysterical laugh. It was cute, but was interrupting all of our sleep. Sure enough, however, that resolved itself after a week or so. Unfortunately, now Moe is having trouble falling asleep and it hasn't resolved on its own. It's been a month or more.

We do everything you're supposed to do, have a consistent bedtime routine that lasts 20-30 minutes, keeping the lights low and distractions minimal. We tried using deep pressure, brushing techniques and swinging. Moe would calm down for a while, but ten or fifteen minutes later, we'd hear him in his crib kicking, playing, screaming and sometimes crying. He was staying awake until 9:30 at night and then we'd have to wake him in the morning, still exhausted, so he'd be ready and fed before his 8 session. Everyone was miserable.

Last week, we happened to have an appointment with our developmental pediatrician, Dr. S, and we mentioned this concern. She suggested melatonin. I'd read about people using melatonin with autistic kids, but I wasn't sure if it was a legitimate thing to do or another snake oil remedy. Apparently, many kids with ASD do have problems producing the melatonin required to fall asleep at the correct time. So we decided to try it.

And thank goodness we did! It is working like a charm. Trader Joe's sells a small, chewable, 500 mcg (0.5 mg) dose. Moe eats it, then we start the bedtime routine. One half hour later, his eyes get heavy and he falls right asleep. We've been experimenting with a half dose (really a quarter dose, since Dr. S said we could give him 1 mg if we needed to), with mixed success. Our goal is to wean him off it and hopefully his brain will get back on track.

But for now, it's wonderful, and it is making a difference in his days. This week, he's been more engaged, verbal and alert. He's having fewer manic times where he can't calm down and I've even noticed he doesn't need to chew (on his chewie) as much. Of course, yesterday, right when I said "at least we've got this figured out," he woke up at 2:30am. That's life, I guess.

May 4, 2010

Kitchen Duty

For Jelly's birthday, we got a new toy: a play kitchen! I found the cutest red retro kitchen and spent about 3 hours putting it together. It looks like this:
I put this kitchen together and it was love at first sight. It is all wood, with no lights or sounds and just a few clicking knobs. I got some adorable wood food for the fridge, freezer and pantry. I already had some toy dishes and pots and pans (made from recycled milk jugs!), and the one million piece bucket of play food. So what I find myself wondering is, did I just get a second kitchen that I have to clean?
Jelly is no help. She just wants to talk on the phone.


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