Two parents, one autistic toddler, one on the way, half a clue, and just enough light to see by

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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As a kid, I was always amazed by those escape artist type magicians. I couldn’t believe they could get all the stuff off, while underwater, while a hungry hungry hippo was coming towards them. (Hippos… one of the deadliest animals on earth. No seriously. This factoid brought to you by the letter P, and the number 1.)

I am no longer enamored by escape artists. Their twisty ways, their ability to shuck off chains, their double jointedness. Not cool at all.

The reason is this:

Recently the J-man started wearing 2 piece pajamas to bed, because we couldn’t in good conscience stuff him into the sleepers anymore. You will remember the Hulk. Now though, he has learned that it is VERY easy to take those pajamas off, especially the bottom part. From there, it’s a quick journey to taking off the diaper/pull-up, and throwing both onto the floor. This usually ends (heh, ends) badly - Mama and Daddy have to wash all the sheets, the pajamas, and the J-man because of the gallon of urine all over everything.

Yesterday after non-nap we had to change the sheets. This morning, J-man had managed to take off the pajamas sometime between the last time I checked on him last night, and before he woke this morning… so the pull-up and pajama pants were still completely dry, while the pajama top, sheets, last vestige of the bumper pad, mattress? soaked. I had two sets of sheets (we do sheet/mattress cover/sheet, although that will change since he can soak through all 3 at this point), a blanket that had been almost under the crib, but not enough that it was missed when he peed off the side, and pajamas. I washed them all, washed down the mattress and re-made the bed. I also gave the J-man a bath (completely confused him) which he was not happy about - so he peed on the floor of the bathroom while I was running the water!

When naptime came, I remembered those blanket sleepers we had - they are slightly bigger than the old lightweight sleepers, so we put him in one of those. Ha! Let’s see what you do now!

Here’s what he did: he somehow managed to un-tape the diaper on one side, then slide it completely down the other leg and wedge it into the foot of the sleeper. He did actually nap. He woke up in a puddle, with a soaking wet sleeper (except of course for the footie part where the dry diaper was!). David Copperfield has nothing on my kid.

2 sheet changes in one day is too many. Tonight, he’s stuffed into one of the old sleepers. We’ll see if it works.

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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Some days start horribly and show no sign of improving. The day easily could prove to be a total write-off. Being one beat off the normal daily rhythm can send your kid into meltdown. Some days, your only real goal is to make sure everyone is alive when the day ends and that any damage to property isn’t permanent. The only way to salvage anything positive might be to find even the dumbest thing in your day that didn’t go wrong.

Here are five things you can do to ensure that your day has at least something like that in it. The sad thing is that each of these has actually happened to us. Like they say, rules exist because someone broke them - like the fact that you can’t mail yourself through the US Postal Service.

1. Look down and make sure you are wearing something more over your behind than just underwear before you walk out to your mailbox. This is particularly positive if your mailbox is at the end of a driveway and you have a lot of neighbors.
2. Speaking of underwear, when you pick up your clean undies from the laundry basket of clothes you didn’t put away, before you try putting a pair on, make sure the cat (or other animal in your house) hasn’t peed on them.
3. Find some way to covertly figure out whether your child is still clothed before the laughing in your child’s room in the morning that may indicate that he stripped down and decided to stand up butt naked and pee all over the wall begins. Bonus points - If you install said device (say a video monitor), try not to aim the camera such that you might see something you’d really rather not, particularly at 6:30AM when you aren’t sure whether you woke up in the right house.
4. Assuming your kid stayed clothed, if you go to pick them up in the morning or after a nap and they are wet, verify the nature of the wetness before proceeding. Remember, it is difficult to see colors in low light, and this is very valuable data to have.
5. Don’t put the diaper cream you keep in the bathroom on your toothbrush. As a safety fallback, verify the nature of the substance on your toothbrush before putting it in your mouth.

Yeah, it’s a reach. But some days setting the bar incredibly low can help you feel like you accomplished something.

And you gotta admit that diaper cream doesn’t foam well on a toothbrush and putting on clean, dry underwear is better than the alternative.

Well, gotta go. My kid is laughing in his bedroom…

Because the J-man has recently gone to wearing 2-piece pajamas (I’m telling you, we tried to keep him in sleepers for as long as possible!), we have had some issues.

Some of it is good: the J-man is learning more about self-care. He is very good at putting his arms through shirt sleeves, and working hard at stepping into shorts. He definitely knows that his socks go on his feet, but will just lay them over a foot because he can’t figure out how to open the top.

Also good: J-man is learning to help take his shorts off. He can already rip his socks off - mostly through effort because he likes to be barefoot whenever possible. He doesn’t like taking his shirt off though, and will fight that.

However… Saturday morning when Tim got up with J-man, Tim walked into the nursery, and the J-man was there with a shirt on. No pants. No overnight pull-up. Lots of pee (crib, sheets, remaining part of the bumper pad). Saturday night, when I put the J-man down, he stayed awake for a while. I joked to Tim that I should check on J-man to make sure he was still wearing clothes. I JOKED! And then I walked in. Little man lying there sound asleep… wearing a soaked shirt, with soaked sheets, and the pants and pull-up on the floor. Bare ass shining brightly. Picking up a wet, sound asleep toddler, trying to get him clean and into new pajamas, stripping the bed and putting on clean sheets, all while trying not to wake him? Awesome.

There’s really nothing I can add to this. Well, except for the part where we didn’t realize these things GLOW IN THE DARK!

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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(Chock full of video goodness!)

“Swifter, Higher, Stronger” is the Olympic motto. It is natural, even if somewhat misguided, to take that to mean that those who go farther or faster than anyone else are our greatest heroes. While Michael Phelps is just freakish in his athletic ability and I would celebrate him getting eight gold medals if that happens, after I would move on. No offense, Michael. Though I probably will go bat crazy if Dara Torres wins gold.

There are some people who have to stare down the most daunting of choices about whether to try to overcome impossible odds or to accept something less. They aren’t the best at what they do, but they represent the best of who we are as human beings. Either for one moment or over an entire lifetime, they do something that inspires us. Through their example, we learn about hope and commitment.

Because of their choices and their determination, there are many athletes who have touched something fundamental in our souls. I could name many more than the ones I mention below, but here are some that really stick out to me.

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Tuesday we tried something with J-Man’s OT called “Therapeutic Listening” (officially, it’s a trademarked term by somebody). You may have come across this under terms like ‘auditory therapy’, ‘auditory training’, ‘listening therapy’, and a host of other terms. I don’t understand how all this works very well at all, and there are different approaches to make things more complicated in learning about it. Here are some sites that give you an overview. I’d suggest reading them in this order: Vital Links (about Therapeutic Listening ®), Tomatis, Berard AIT, and Samonas (whose website layout is a mess, but that’s another matter).

From what I gather, the above methods vary some from one to the other. The following describes what we did for Therapeutic Listening on Tuesday. Any similarities between my description and the actual science and technical bases for any of these methods may be pure luck on my part. Like I said, this is new to me. It’s the end result that left me astonished, and plenty fascinated to learn more about this.

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As you transition from Early Intervention to your county school system’s services and preschool programs, there comes a time when you have to subject your child to a bunch of evaluations in order to determine his or her eligibility for services. Yesterday was our turn.

I should preface all this by saying that this sounds like things are worse than they really are, though there have been a number of issues to be sure. We’ve been frustrated, and that’s been made worse by us just being plain exhausted lately.

We haven’t exactly made it a secret that we haven’t been particularly enjoying this process. Early Intervention was a lot more laid back for us. One thing we’ve learned is that getting specifics from anyone in the IEP development process is a chore. (link to Wikipedia for those who don’t know what this is) There’s a straightforward enough explanation for this. Anything they say could be used against them at a later date if a child doesn’t get the services the parent wants. However, when all that butt covering gets in the way of actually getting any real information about what is going on, I don’t give a rodent’s posterior about one’s need to keep one’s legal issues covered.

So we’ve had to push back - not hard, but we’ve been firm about some things. Reading the tea leaves, it appears that our concerns were escalated to the next level up. This has led to a lot more clarity (at least on our part) and a sense that we’re all on more equal footing, which is how it’s supposed to be.

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Six years ago I promised to love you forever. I didn’t know then that my love could grow stronger every day. Our lives are very different than when we met, a long, long, long time ago. We’ve shared so much laughter, lying in bed late at night. You’ve been my rock, and I’ve been the shoulder for you to cry on.

Six years ago, my dad was in the hospital, and we were so tired that we used the elevator rugs to keep up with the days. You went to sleep with your head on the table at dinner the night of our wedding. We had not even imagined the whole “living in This Old House” time in our life together.

Six years ago, we were different people. Oh, we thought we were at the place where love is at its greatest point, but we were wrong. Now is that time, and tomorrow will be more so, and tomorrow’s tomorrow even more.

Six years ago our lives officially were joined together. I look forward to sixty more.

I love you. Happy Anniversary

[A long, long, long time ago - aka senior prom.]

[Six years ago.]

Well, this is different.

Despite the fact that he’s known it’s there since he’s been able to crawl, J-Man has decided that the air conditioning vent by the front door is the best place in the house. So, he grabs a couple of wooden blocks and goes and sits on it and plays - for hours if you let him. Since it’s been 95+ degrees here lately (like 400 Celsius for the metric people… at least it might as well be), the AC runs a lot. You go to move him, and - beyond just being mad - he’s cold as a popsicle. And he doesn’t seem to care one bit; matter of fact, he loves it.

It doesn’t hurt that it’s in a corner, which adds another nice feature for him (snugness and security). He’ll take you by the hand and bring you over to it to play with him. He’ll take his snack over there to eat. If he wants more snack, he’ll leave his spot, come in the kitchen and get it, and then go back.

Go figure.

It’s getting to be the norm around here that J-Man will come up with a new ’sensory-calming quirk’ out of nowhere. These are things he seems to figure out “hey, this makes me feel better and calmer!” so he keeps doing them for a while, sometimes to the point of fixation. Just about as suddenly, he drops whatever it is from his arsenal, presumably when it no longer suits him. He’s smart like that.

I like cold, but geez. He’d be warmer sitting in the refrigerator. And he loves it. Something new every day!

If motherhood imparts traces of omnipotence, even the rhetoric of special needs motherhood raises the bar. Often we are called “superhuman” or “saints.” The “I don’t know how you do it” that special needs mamas hear implies that we must have some other-worldly qualities to help us make it through the day. The notion that we doubt ourselves, keenly feel our limitations, or labor over our decisions simply doesn’t line up with the power necessary to meet the challenge of our daily tasks. – Vicki Forman

This mama says exactly what I would say if I could write like that. I am not a saint. I am not a superhero. Sometimes I’m not even a very good mama. I get tired of sensory issues and say things like “Just eat” or “Just climb the damn stairs.” I get jealous that my friend’s little boy, who is a year younger than the J-man, is speaking AND eating table food. I get scared about what is next, and so I procrastinate instead of learning something new, because then I have a reason for failure, instead of being a failure. I read random books as a form of escapism.

However, I do have superpowers! I can call upon the power of the boob at a moment’s notice, and my super-sensitive-nose has saved us from taking the J-man somewhere moments after he’s pooped. I can sing many songs in many keys, and have learned to vary the pace so he can sing along. Mostly though, I can love him.

That’s my best superpower.