ASD

We met with his new teacher today here at the house, and what a nice and on-top-of-things person she is! We were very impressed and very thankful she’ll be his teacher. She invited us to visit the classroom this afternoon so we went over to the elementary school just a little bit ago and sat in on the class for about an hour. They’ve done brilliant things with their classroom space and we were blown-over impressed with the whole thing.

It’s a recently-minted school - this is their third year - with 900 students overall (regular classrooms plus special ed classrooms), with three levels for autistic kids (Pre-K, K-2nd, and 3rd-5th). It still has that new-school feel to it. Of course, with new school comes better equipment, so that’s always a plus.

J-Man wandered around the room and looked at everything. He seemed quite happy there, even though he would always come back and cling on to one of us for a bit before he explored some more. It was nice to see him adjust quickly to the space, though adjusting to the routine of a six-hour class is going to be a lot like dropping him into Outer Mongolia for the first few weeks.

The teacher told us how other kids in the class have progressed since starting. One had only one word when he started at age 3 and now a year later is showing off so much great language. They were following their picture schedules and tapping sticks along with the music and using words to ask for things and engaging in pretend play with Cookie Monster (!!!!!!) and so much stuff that we’ve only been able to dream of J-Man doing. It almost brought me to tears to imagine J-Man maybe doing these things within a year.

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(It’s not exactly his birthday, but today was where the party had to fit in the calendar.)

It’s hard to believe he’s 3. Time really flies away on us. With him starting in the Pre-K autism preschool next week, this will definitely be an eventful and emotionally-charged week for us.

After having jam-packed events for his first two birthdays, we decided to keep this one low-key since he got a bit freaked out by the last two and the crowds. Most of our friends were out of town for the holiday, so that kept things simple, though we would have liked for them to be able to come.

I’m not sure there is a really good way to have a birthday party for an autistic toddler and still have any number of family and friends over. It’s hard to not overstimulate us as parents let alone him. We had to go well into our bag of calming tricks and manage a few tantrums, but it was still a lot of fun.

Mary found this excellent ‘cake’ at Target. It’s a bunch of cupcakes arranged into the shape of a monkey. And they were yummy too! Of course, he refused to touch any part of them. He never has liked any sort of cake. Unless they make birthday cakes out of chicken nuggets and tortilla chips, it may be a while before he eats his own birthday cake. (Obviously, his name is redacted.)

 
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We got the call today from the school system that we’ve been assigned to the school we wanted! All indications are that this school has a great Pre-K autism classroom (called “structured learning” here) with a teacher people rave about, all that and it’s just two miles from our house!

We talked briefly to the teacher today and we’re going to meet with her on Tuesday to get acquainted. She sounds like a very nice person who’s on top of things. We’re really looking forward to this.

Our first day of school should be Wednesday. What a long, strange, and very stressful trip this has been, but it looks like everything has worked out great. What a relief!!

It’s a weird feeling now because we had put so many plans on hold until all this resolved itself and everything finally became official. It’s still going to be disorienting for him to be away from the house so much. I imagine we will be really lost the first couple of days.

That and our little boy is growing up and starting to take a few steps out on his own. After having to be involved in every aspect of his life every day for three years, it’s hard to let go that little bit so he can start to do some things on his own.

And so begins one of the biggest transitions - if not the biggest - so far.

Thanks to everyone for the good thoughts and well wishes for today’s IEP meeting. We appreciate everyone’s encouragement!

This is the brief version because we’re feeling baked right now. After all the emotion and stress that gets invested in the IEP process, now that it’s essentially over, all we can think about doing is crashing for the night.

After today’s 2 1/2-hour IEP marathon, we signed all the papers and everyone left with a sense that we had come up with a good plan. If ideal is 100%, I’d provisionally give the result about a 90%. The 10% difference felt like reasonable compromises. We had the perfect scenario in mind and a range in which we’d negotiate, and the result fell somewhere in there.

The main highlight is getting full-day, five-day-a-week preschool, which is sort of the holy grail here. The bonus came in finding out that the “structured learning” class (it’s not ‘autistic preschool classroom’ anymore here) has a much better teacher-student ratio than we had originally been told. They’ve been restructuring how they do preschool for autistic kids here, so people are still figuring it out. It’s three teachers for eight students, which just rocks. We were willing to give a little on services since he’ll be getting more individual attention than we originally thought in the classroom.

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The Surfer’s Healing day camp is a highly-acclaimed, insanely-popular surf camp for children with autism. Everybody who has done it has given it rave reviews. We’re obviously not ready for such an adventure, but I keep hearing about it from parents here, so I was glad to see them do a piece on local TV about them. It’s so popular that getting a spot is very difficult and they’re already booked up for the season, but I wanted to mention it anyway just because I’m so impressed with their vision.

(Click here to read the piece, or click here to see the video of the TV spot. - Note: Will definitely make you all teary.)

The program was started by Izzy Paskowitz, whose own son is autistic. He saw how surfing did such wonderful things for his own son and got the idea to spread this gift to other children. He’s interviewed in the video, and you can tell how big a heart he has. He has the face of someone who has tapped into something amazing. It makes me feel better just knowing people like that exist in the world.

For parents of autistic children, many days are difficult. We know we’d bear anything and do whatever it took to give our children a really great day. Most parents we know of ‘typically developing’ children don’t really understand what that means to us. We watch our children struggle bravely through every challenge, and all we want is one day where these challenges fall away for a while and nothing but joy pours out of them.

You can see the faces of the children and the parents in this video, and one thing is clear - this was a really good day.

As I was leaving the library near J-Man’s preschool for my weekly “Friday Bliss and Freedom” two hours of time off (where “off” = “the rare occurrence of 120 consecutive minutes to do work for clients”), I passed a mom and her two kids where the son was screaming bloody murder. I had seen his fit begin when the mom denied him the reward of a sticker or something at the library’s front desk because of his behavior. He was screaming at levels that would have brought me running to see if someone was being attacked, if I hadn’t already been there.

I admit that before becoming a parent I likely would have judged her as being a crappy one. After long practice of finding creative ways to talk about J-Man’s quirks and behaviors and being around countless other children with similar needs and challenges, I think I’m starting know better. I’ve been on the receiving end of looks from other parents who I can tell are judging me and judging my son because he does things differently. I’ve developed a thick skin, but I still know how it feels.

A parent wiser than me once said, “Before you decide you know what’s going on, pause a moment…because you never know what their story is.” A couple of times I’ve discovered “the story” of a situation and been humbled by it.

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We haven’t written about our fish oil/Omega-3s experiment in a while. (To catch up on the backstory, view all of the posts tagged Omega-3.) This is mostly because we keep waiting for some revelatory event to help us determine one way or the other whether it has made an obvious difference in J-Man’s progress, particularly with respect to his apraxia and speech development. I’ve read studies that suggest it provides noticeable improvements to other autism-related issues as well, so obviously we’ve been paying attention to that as well.

I noticed that today brings us very close to the six month-aversary of starting fish oil with J-Man. To be honest, I can’t tell an appreciable difference between what I would expect his improvement would have been without it and what it has been with it. Obviously this is hardly a scientific experiment, so take it for what it’s worth, but it’s pretty clearly not been a miracle solution or anything.

Am I disappointed about this? A little. Speech feels like our biggest hill to climb and the one area around which so much of our emotional energy goes. His growth has been slow and steady, but he’s still coming out 18 months or more behind on speech evaluations. Relative to his age, his behind-ness hasn’t changed much since we started the fish oil.

Do we plan to stop using it? No. I’m fairly convinced that fish oil has benefits to our bodies in many areas. I take it myself and think it’s an important part of the supplements and vitamins I take. It isn’t doing him any harm, and perhaps it’s giving him some positive benefits that we can’t readily see.

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We mentioned before that we got a meeting with the school system’s part of J-man’s IEP team to go over their part of the results from his various evaluations and assessments. This is not the default way they (or apparently most school systems) do things, but you are entitled to see all of these results before you craft all the parts of your child’s IEP. And, more importantly, you are entitled to those results before you show up to that meeting. It’s usually not until the meeting itself that you get the results, which I think is wrong.

This may be one of the most critical things we’ve learned in this process, so listen up.

Get a copy of all of the reports they have written as a result of their evaluations of your child and get them several days before the IEP meeting. If they aren’t receptive to this, tell them you are entitled to it and you expect to receive it. Do not back down from this.

Here’s the really important part - get it far enough in advance of the actual IEP meeting so you can review the report, understand everything in it, determine whether it’s an accurate description of your child’s current abilities (Present Levels of Performance - or PLOP - is the fancy term), and if the report contains inaccuracies, either request corrections or take the necessary steps to provide evidence that their report isn’t a fair assessment of your child’s abilities.

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Far and away, the most popular post we’ve had is “What’s Your Autistic Toddler Like?” - the one that lists the specific autistic ‘traits’ or ’symptoms’ our son has and to what degree. After talking to other parents, the reason why that post is so popular is abundantly clear - parents are afraid and want to know for sure what’s going on. We know; we’ve been there.

With it coming out this past week that Britney Spears is concerned that her son is autistic, the awareness to the issue that brings makes it seem like a good time to cover some steps you should take if you are concerned that your child has autism. There are more than five, of course, but based on our experience, here are some good starting points people either suggested to us or that we wish they had in the midst of all of our confusion.

A few notes first:

1. We are by no means authorities on this subject. This is no substitute for professional advice and your own common sense and expertise about your own child.

2. I know we have some readers outside the U.S., but honestly I don’t have a clue how your local, state, and national governments provide services. Some of this will still apply to you regardless. We’d love input from our readers in other countries.

3. This is primarily geared toward parents whose kids are under age 3.

OK, on with the list.

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