Posts from — April 2008

I promised this post a while back. Sorry I’m just now getting around to it.

For kids who have severe speech delays and are unable for whatever reason to sign, some variation of the Picture Exchange Communication System (PECS) - known more around here as the ‘picture board’ - is a great way to get some sense of what your child wants. The fundamental principle - any kind of communication is good communication. (You can also read the Wikipedia article, though I couldn’t readily find an easy-to-read description of it.)

I use “some variation of” in the above paragraph because the PECS inventors have a specified way of doing it, and I imagine we ain’t following it to the letter. But that’s OK. This is working for us so far and I’ll tell you how we do it.

Standard disclaimer: Again, this is how we do it and isn’t intended to tell you how you should do it (or even whether you should do it) for your child. We’ve worked on adapting this to work for J-Man in concert with his speech therapist. Your speech therapist will be your best resource in developing a plan for your child.

That said, I think this is worth trying out if you aren’t getting communication by voice or sign. It’s worked well for us, and it comes highly recommended for kids with autism, apraxia, and other severe speech delays.

OK, here’s the picture board. Obviously, the board focuses on food. I’ll tell you why in a second.

[Top row - crackers and puree; middle - tea and chicken nuggets; bottom row - cheese toast and puffed veggie sticks]

It’s a simple piece of dark poster board (so the pictures show up better), tacked on to the wall with double-sided sticky stuff. Underneath the pictures are velcro dots, with the opposite part of the velcro on the back of the picture. The pictures were taken with a digital camera, printed on our home printer, and laminated. They can be detached from the board as needed to swap out pictures or use them for something else.

At first we pretty much moved him over to the board, took his hand, touched it to a picture, then handed him that food item. We repeated this routine for a while, but to our excitement he picked it up pretty quickly. We started with just 2-3 pictures and worked our way up to the current six. You definitely want to keep the choices few and simple at first.

The next breakthrough came when he essentially would punch the picture of what he wanted on his own (first big want - corn chips…) and then he would get it from us. He didn’t make a vocal noise to go with it, but he got his point across and everyone was happy.

Even better was when he’d reach for something and we’d say, “use your pictures!” then he would go touch the picture of that something and come back to us to get it. I’ve even seen him hand me something he wanted, go completely across the downstairs to touch the picture, and then come back to get it!

Lately it’s gotten really good. He’s giving us his words (or word approximations) while pointing (we’re tickled stupid when he points with his index finger) to the picture. This nearly knocked us flat the first time he did it. We still sometimes have to prompt him to point to the picture even if we know what he wants. We want to keep reinforcing the pictures, and so far that’s worked very well. In all likelihood, this will be our most effective form of communication for a good while, though clearly we’re seeing great verbal improvement as well.

So we usually get:

(All caps means the stress is on that syllable.)

• Points to tea -> “KUH kuh” (for ‘cup’ - he makes these syllables longer in duration for ‘cup’, which is important since he uses ‘k’ sounds a lot)
• Points to chicken nuggets -> “NUH nuh” (for ‘nuggets’)
• Points to cheese toast -> “CO co” (his word for ‘toast’ since he substitutes ‘c’ sounds in for ‘t’ sounds)
• Points to veggie sticks -> “keh keh” or “k-k” (like two, breathy ‘k’ sounds said quickly - hard to describe - which is what he does to several words that end in ‘k’ or ‘ks’ like ’socks’)

It’s hard to describe what a miracle this is.

Minor variations - for cheese toast, he may do the above and then go to the toaster, reach for it, then say “coco” again. For nuggets, he may do the above, go to the microwave, reach for it, and say “nuh nuh” again.

He’s not been into crackers lately, so that one’s been ignored for a while. When he was on a cracker binge, he pointed to it a lot, I think largely because he was so excited that he could actually say ‘cracker’.

I promised I’d say why we focus on food and not toys and other stuff. The main issue we’re facing is that the pictures represent something literal to him. With food, what’s on the picture is what he gets. It’s a literal representation of that food. Except for one. Bonus question - which one doesn’t work very well and why?

With toys, a picture of a book means I want THAT book, not just any book. This means that if he’s faced with choices on the toy board of a few things he really doesn’t want to play with, he won’t pick any of them. We have a toy board, but it has been a flop so far compared to the food board. The food board has the advantage of that he only will eat a half-dozen actual foods. So literally everything he eats can be captured on that board. Still, we are staying at it on the toy board. Someday it’ll click.

We have been unable to generalize the objects in the pictures, though that’s the long-term goal. Eventually, the idea is to have a picture of just about any food mean “I’m hungry” with the next step being a way to choose what specific food he wants using specific pictures. This creates a sort of decision tree that could be consolidated into a book if need be.

You might be able to see where a system like this starts breaking down. If you need a literal picture for everything your child might want, you could end up with hundreds of them over time spread over picture boards all over the house. You can put them into a ‘picture book’ (basically a portable photo album), but you need to get to some way to work through it without flipping pages all day.

Our therapists have described the eventual goal in these steps: 1) Child picks a broad category of want (food, drink, toy, book, person, etc.), 2) Parent or child flips to the section that shows individual pictures related to that category (let’s keep with food for this example), 3) Child picks specific want from the pictures in the food section (e.g., toast).

It’s step 1 that we can’t get past yet, and that would probably be the case for most anyone starting out with this. J-Man doesn’t generalize from a picture of any food or a picture of any drink to “I’m hungry” or “I’m thirsty.” Choosing a picture means “I want that.”

In addition to those goals, the idea is to transition to other representations of the objects rather than just photos. This could include more cartoonish drawings or even line drawings. Obviously the primary goal is to get him to communicate well verbally, but again, any communication is good communication. If this helps him communicate his needs until speech can someday catch up better, then we’re all for it.

Answer to the bonus question - the puree. Because puree could mean any puree (applesauce, pears, sweet potatoes, whatever), so it’s not literal. Therefore, he pretty much never picks it because it’s too vague a choice.

Someday I’ll try to get a video of this. Whenever we pull out a camera, he either hams it up or stops doing whatever he was doing, so we’ll need to be subtle about it.

In the meantime, if you have questions about how we do it, feel free to ask. We’d love to hear from anyone else using this approach as well. Thanks!

Lately J-Man has been trying to stick small objects, particularly little bits of food, into his ears or up his nose. Normally this involves small bits or crumbs of chicken nuggets or toast. I don’t think he’s ever tried to stick anything sharp up there.

Let me just say that pulling a little fragment of chicken nugget out of your kid’s nostril is an experience better left unshared.

Anybody see this in their kid? This came out of nowhere and has stumped us. He doesn’t seem to have an ear problems and he doesn’t otherwise pick at his ears.

Anyone have any insight into this?

J-Man has made huge leaps forward in his speech lately. This is all relative and he’s still way behind for his age (almost 2 yrs. 8 mos. and is probably close to 18 months behind), but for him this has been a quantum leap forward the past couple of weeks.

For a bit of backstory:

As you probably know, severe speech delays (or non-existent speech) are one of the pillar symptoms of an autism spectrum disorder and are probably the most straightforward way of differentiating autism from Asperger’s (all other things being roughly equal).

ASD kids tend to fall into two general groups: those who never really developed speech or developed it very slowly, and those who had normal speech development and then ‘lost it’. I know next to nothing about the latter and am not going to get into the debate about what brings that about. J-Man falls pretty clearly into the former group, so I’ll talk about what I know.

He has gained and lost some syllables over time in the past, but that problem seems to have faded away now. He’s retaining most of the syllables he’s picking up, which is wonderful. I know it’s not uncommon for kids with apraxia to have ‘lost speech’ problems, and that seems to be the case with him.

For example, about a year or more ago, he said ball (’bah’ or ‘bah-bah’) and duck (’duh’ or ‘duck’ with a very soft ‘ck’ on the end). After doing that for a while, we haven’t heard them much at all since, nor anything else that starts with ‘b’ or ‘d’. One of our therapists said that speech for kids like him has a hard time “locking in” and that this will happen.

Instead of thinking of it as having speech and losing it, it made a lot more sense for his therapies to look at it like him maintaining this sort of Law of Conservation of Total Syllables. On the whole, his total number of syllables remained about the same or increased very, very slowly, but I wouldn’t say he ever regressed for any length of time. This helped us chart his progress better and stay more positive about it. That whole situation was weird to us, but the apraxia diagnosis made sense and still does.

One things he’s done for a long time that is both fascinating and frustrating is that he will out of the blue say a syllable he rarely if ever says (like ’sh’ or ‘ffff’ or ‘ts’), will do that for a minute or less, and then we won’t hear it again for weeks. Apparently this is also common to kids with apraxia, which is itself common for kids with an ASD.

As our readers likely know, we’ve been giving him fish oil for about the last two months. Within the last couple of weeks, we’ve seen marked improvement with his speech. As I said in my last Omega-3 Watch post, I hesitate to put those two sentences together as I have no hard evidence that the fish oil caused the improvements. We have also been focusing on speech therapy intensely at home during that time, and that (or both) could be bringing this about. We don’t know, but we’re going to keep doing both.

What I am convinced is helping tremendously is his patience level. As we’ve been able to withhold things he wants for longer periods of time until he asks for them in some (or any) verbal way, his speech level has improved drastically. It used to be that he would fall apart a half-second after you held something back from him. As that time got longer, things got easier, albeit with not a lot of speech improvement. In a few seconds, he would just get so flustered that we’d lose him. It seemed to me that he was so frustrated that he couldn’t say the word that he got upset.

As his ability to tolerate this withholding has gone up and his patience with himself has increased, this process has gotten much easier. They told us a year ago that this would be the cornerstone of his speech therapy; he had to be willing to be patient and have the ability to tolerate frustration to have a breakthrough. They were right.

They’re basic line: “He has to be ready to do give-and-take or else speech therapy won’t help.” Yep. And all that effort we’ve put into accomplishing that has really paid off.

Here are past and present examples.

Before:

Me: Would you like more to drink? (pause a second and withhold the cup)
J: (nothing, but is looking at me)
Me: More? (pausing a second or two)
J: (nothing, but looking more distressed, maybe reaching toward the cup)
Me: Can you say more?
J: (getting more agitated, whining, no words)

Repeat this a couple of more rounds and he’d get upset and whiny without saying anything word-wise.

Now:

Me: Would you like more drink? (or more cup) - pause a few seconds.
J: (looks at me and the cup but may not say anything in this round)
Me: Do you want more cup? (pause a few more seconds)
J: (Looks for a couple of seconds, then) Mo-mo. (what he says for ‘more’)
Me: More what?
J: (readily says) Kuh-kuh. (what he says for ‘cup’)

Then he gets the cup and drinks. That exchange probably takes about as long as the first one, but he’s expressed his needs verbally, gets what he wants, and we go forward and keep eating.

Interestingly, if he doesn’t really want more of something, he usually just refuses to say it.

This is a quantum leap forward for him.

With apraxic kids, the ability to have your own parental self-control and patience to wait calmly along with your child’s ability to be patient enough to plan out the words and talk are crucial. Our natural tendency is to repeat things quickly or give in. It’s hard to fight that, but J-Man has done much better if we give him several seconds or even longer to think about what he wants to say and plan out how to say it. Now that he’s patient enough for that and we are too, things are going more smoothly.

The benefits of this are carrying over to other therapies as well, so this has been a real positive for him. Yay, man!

This is a VERY LONG post about cooking. The only thing it has to do with autism is this: when your child is self-entertaining, it’s easier to cook while he’s around, because you don’t have to worry about him being all on top of you - because he can entertain himself (although there was a point Saturday night when I was in bed trying to figure out what the song running through my head was, and realized it was from the keyboard that played in the background all day).

Luckily, Tim realized it was ‘The Big Cook’ weekend, and planned his work accordingly so he could spend extra time with the J-Man. Oh, and that sometimes we run out of time to make a ‘fresh’ dinner because we’re running around with therapies and whatnot, and that’s when it’s great to be able to pull out something frozen and quickly reheat it. I love the microwave for that.

This past weekend, I did what we call ‘The Big Cook.’ It’s the reason we have two cabinets full of Gladware individual serving containers. Here’s how it works:

* The week before: sit down with a yellow note pad and come up with a list of foods you want to make. These should all be easily divisible into portion sizes and freeze and thaw well. Write down ingredients needed for each recipe, then add like together. For example, I ended up needing NINE POUNDS of ground beef total!

* Thursday night: make lists - we made the Costco list, the Super Target list, and the Harris Teeter list. We knew we could get meats and some larger sizes of canned goods at Costco, but didn’t want to buy a flat of 12 cans of diced tomatoes for example. That’s what the Super Target list was for. The Harris Teeter list was for the things we couldn’t get at the other two stores. HT is much more expensive, so I go there last.

* Friday immediately after work: load up into the car and go to Costco, list in hand. Buy most meats, that 105 oz can of crushed tomatoes, a new monitor for me, laundry and dishwasher detergents, and the best thing ever found at Costco: a red stapler.

* Friday night after putting J-man down: go to Super Target and get that list’s worth of stuff.

* Friday night after Super Target: Divide hamburger into portions needed for recipes, freezing the other 3 lbs in bags for later use, using your new digital kitchen scale. Rhapsodize about how much you like your new scale.

* Chop onions and garlic, and fry with 4 lbs of hamburger; drain. Add to giant stock pot, along with 105 oz can of crushed tomatoes, plus another 28 oz can, and lots of Italian spices (oregano, basil, parsley). Taste. Add more salt. Have Tim taste. Add a few cubes of frozen homemade pesto. Portion into many containers, label, and have Tim take out to the deep freeze in the garage, because the garage is also home to the giant cockroach, and seeing it skitter makes me shivery. WASH THE POTS.

* Saturday morning: instead of sleeping in, get up and start cooking again! Take one of the two chickens, and put into the giant stock pot. Cover with water. Put on the back burner, and let it boil for an hour or so.

1. While that’s cooking, chop onions, garlic, and green peppers for sloppy joes, hotdog chili, chicken chili, and penne bake.
2. Put onions, garlic, chicken broth, spices, hot sauce, and frozen chicken thighs into crock pot for chicken chili. Turn on and forget about it.
3. Brown hamburger, onions, garlic, and green peppers for sloppy joes; transfer to other stock pot, and add tomato sauce ingredients to it.
4. Brown hamburger, onions, and garlic for penne bake; drain. Put that into a container and into the fridge.
5. Brown hamburger and onions for hotdog chili; drain. Make hotdog chili while sloppy joes mix is simmering.
6. Remove chicken from stock pot, and refrigerate. Pour off chicken stock into big containers. Repeat process with the second chicken!
7. SHOWER, you stinky person!
8. Containerize (OK, seriously, Word thinks ‘containerize’ is an actual word,) both the sloppy joe mix, and the hotdog chili, and place in garage freezer. Clean out garage freezer so more can fit. Make SURE you label everything - we just use masking tape and a pen.
9. Make the first batch of chicken and dumplings. This is a long and arduous process that I hate, but we love chicken and dumplings, so I make them, but only on The Big Cook weekends.
10. Wash the pot, so you can use it for chicken chili: dump everything from the crock pot into it, shred the chicken, then add 4 assorted cans of beans, 2 cans of corn, and lots of cilantro. Stir and containerize.
11. Eat PB&J for dinner. Never want to look at cooked food again.
12. Put J-man down for the night - and have Tim separate the meats you bought at Costco into individual servings - freeze those as well.
13. Make the other batch of chicken and dumplings. Force Tim to come downstairs and help with the dumplings. Containerize everything and make Tim take them out to the garage. Realize we are now out of individual-size containers. Put one giant container in the fridge. Cram pots into dishwasher and run it.
14. Moan about feet hurting until Tim rubs them. Sleep like death.

* Sunday morning: up to make the 3 pans of penne bake. Reheat container of hamburger mix you refrigerated yesterday - add mushrooms you just chopped, and diced tomatoes and spices and let simmer.

1. Fire up the giant stock pot to make 8 cups of penne. While that’s cooking, go ahead and chop the onions, celery, and green peppers for gumbo, and the onions and garlic for spinach/onion quiche.
2. Freeze the gumbo veggies in freezer bags since you don’t have any more individual containers, so the gumbo will have to wait, but now you’ve done the hard part.
3. Make cheese sauce for penne bake. Put 3 pans of penne bake in the oven.
4. SHOWER, stinky!
5. Containerize the penne bake in bigger containers, consoling yourself that you’ll probably have that for dinners, so won’t need the individual-size containers.
6. Chop up the ‘meat for stew’ into smaller pieces, and freeze in bags for later. We throw a couple pounds into a crock pot with some soups, cook all day, and serve over rice. It doesn’t have to be cooked beforehand since it’s so easy.
7. Make spinach/onion quiche and bake. Cool, slice, and freeze 2 slices each in freezer bags for quick lunches. (I was going to make a ‘quickie/quiche’ joke, but figured you had already thought of it.)
8. Marvel at the state of the freezer. It’s FULL!
9. Take a couple containers of food over to a friend’s house - three of the four of them (including both adults) are sick, or have wrist issues that preclude cooking.
10. Make marinade for ham, and put it together with the ham in the fridge for overnight.

* Collapse on couch. Fold four loads of laundry done during the cooking ‘downtime.’

* Get J-man ready for bed.

* Soak feet. Even though you knew to wear shoes all day, your feet are still killing you.

Today I still need to bake the ham, and I truly would have made gumbo if we weren’t out of containers. I thought about going to buy some more, but just couldn’t do it. At least ham is easily freezable in freezer bags. I was also going to make 10 lbs worth of garlic/onion mashed potatoes, but again, no containers. I actually MAY go buy some, since potatoes will go bad. What? You didn’t think you could freeze potatoes? The only issue people have with that is the texture, and since in this case they are mashed, the texture isn’t affected.

That, my friend, is ‘The Big Cook.’ It will be a LONG TIME before I cook anything complicated again, and that’s the beauty of it.

Hints for your own big cook:

• WEAR SHOES. Your feet will hurt less.
• Clear the counters and make sure all the pots are clean the night before. You will need the room!
• Double, even triple, recipes. (Or in the case of spaghetti sauce, quadruple) It doesn’t take much longer to chop two onions instead of one, and saves you from having to do a big cook that much longer.
• Be able to multi-task.
• Label everything. Trust me: hotdog chili looks like spaghetti sauce, which looks like chili with beans, and they all sort of look like veggie soup.
• Use pockets of time where something is cooking to accomplish other things, like doing laundry, or chopping onions/garlic/green peppers for other recipes. Or, use a chopper/food processor. I didn’t use my mini chopper this time, because I knew I would only have room on the counters for a few things at a time, and anyway, I kind of like chopping,
• Wash as you go.
• Have someone available to rub your feet at the end of the day.

The Holland Tourism Board would like a word with you…

If you’ve ‘gone public’ with having a special needs child for about this side of 37 minutes, odds are stellar that someone has sent you the “Welcome to Holland” poem by Emily Perl Kingsley. For the uninitiated, click that link and go read it. I’ll wait.

While it’s not as controversial a topic among parents as say vaccines, you’ll still get a wide range of reactions and emotions about it, and those may change drastically depending on the mood they’re in at any given moment.

Regardless of what I say next, most people who have sent it to us have done so out of concern and love for us. To them I say, I appreciate you more than you know, and I hope you’ll understand that the emotions of parents of autistic children are complex, varied, and wild. And we get more honest about that as time goes on.

At first I hated that poem. Then I felt like I got it. Then I felt like the poet was a bad parent and I cursed her name to the darkness (I was bitter then - duh). Then I kinda got it again. Now I have a completely different reaction to it:

What the hell did Holland do to deserve this?

I’ve never been to Holland or Italy, and beyond one having the Pope’s house in the middle of it and the other having a higher population of blond women, I don’t know what the primary pros and cons are. I have no clue why the plane full of all the special needs kids and families got rerouted to Holland, except perhaps the flight attendants thought the screaming indicated a potential terrorist threat.

Luckily, I’m not alone in this wondering. A funny reply came in the form of “Holland Schmolland” by Laura Krueger Crawford. Apparently a cottage industry of these things is popping up.

Then I found “Welcome to Beirut,” by Susan F. Rzucidlo, which is utterly brilliant. It’s got me wanting to write my own.

In the end, I only have one reaction to the Holland poem, and I think this one is here to stay. Neither Italy nor Holland nor all the countries in the world combined can hold a candle to our son.

Our house can range from idyllic to insane, but I wouldn’t trade it for anything. Not even all the artwork in Italy together could impress me more than what my son struggles to create with crayons and computer paper. The art on our walls at home is the symbol of all the hard work he’s put into overcoming his challenges. He is our masterpiece.

Rzucidlo lasers in on one of the biggest truths I’ve learned so far when she says, “You will know sorrow like few others and yet you will know joy above joy.” We celebrate every little step, no matter how small. We give thanks to all those parents who’ve gone ahead of us and given us roads to follow. We feel affirmed by those parents who see us go to tears when he says a new word and know why. We rejoice for the gifts given to us by skilled, committed, kind-hearted therapists who work for pay far less than the weight-in-gold salaries they deserve.

We have very high highs and really low lows, but between that vast expanse, we see all the little details of the world. I sit and stare at the sky because he does. I discover microscopic pieces of dirt in the carpet just because he does. I wonder what all I would miss if he didn’t show them to me.

One more thing I’ve learned - There are a lot of good and kind people in this world, and we’ve only just begun to meet them. We wish our son didn’t have to struggle like he does, but he is accepting it with bravery and grace and determination. We can do no less.

Our little bundle of vestibular sensory issues decided this past weekend to say, “Forget that mess! I’m going down my slide!”

To which all God’s people said, “You know that’s right! Come on down, brother!”

We put him on top of the slide, and he sat there all by himself. First time he ever did that without holding on to one of us. Then he grabbed each side of the slide at the top like he was preparing for a luge run and pulled himself forward and down the 8′ run with the 4 1/2′ vertical drop. (Kinda steep)

Since he’s never even thought about doing this before, you’ll notice there’s nothing but ground down there - no mulch, no nada… Bad daddy…

You win a lot of small victories in therapies, but then you get days where he just busts out a home run of an achievement of something he’s never even contemplated trying before. He did it all by himself, and then he went and did it again, and again, and again.

These are the days you jump up and cheer until you throw out a shoulder from pumping your fist in the air.

His expression in the 2nd picture is absolutely priceless.

We had our first meeting with the school system today! Mary and I took the 25-minute drive down to where most all of the county and state child-oriented offices are.

Architectural aside: You can tell that the construction of this building and the passage of the legislation that mandates special ed services might have had something to do with each other. The 70s, brown, prison-crossed-with-bland-military-base-buildings motif of the place was as depressing as I remember it from his first evaluation there two years ago. An army of children could have shat all over the bathroom and you never would be able to tell.

Anyway, the meeting involved his Early Intervention Coordinator and a representative from the school system. As defensive as all parents who go through this are programmed to be from the word go, this went very well. We’ve been told by several people that if you’re going to live in North Carolina and have to get services through the county school system, where we live (Wake County / Raleigh) is the place to be.

No real red flags at this point and we have a pretty decent sense of what our schedule is going to look like between now and the start of the school year. Many parts of the outcome are unknown obviously (where he’ll be placed, what services he’ll qualify for, etc.). Given that the official meeting to determine everything (the IEP meeting) won’t be until less than a month before the school year starts, we’ll be hitting up on some serious time pressure there. Because his birthday and the start of the school year are within a few days of each other, this apparently makes it much easier for him to get a placement closer to our house. There will be much rejoicing if that happens!

The one major issue that gets my Hanes all in a wad is that when school isn’t in session, the special ed kids get no services through the school system unless they are in an extreme situation of regression. I was thinking, Yeah I know school won’t be happening, but surely he can still get some speech and occupational therapy through the county during those times. *Buzzer* Thanks for playing.

Harsh reality of county school services #1 - No school = you’re completely on your own until the next time the bell rings weeks or months from now.

News flash for school systems #1 - The typical degradation over the summer of a child’s knowledge of civics and calculating the time it takes trains to meet in Wisconsin is not as big of a deal in the grand scheme of things as the potential regression of speech in an autistic three-year-old. I’m way more interested in him talking than having that vacation to Disney. Just sayin’.

We do both kinds of school years here: Year-round and “traditional” (end of August to early June, give or take). I would think every special ed parent in the world would want year-round since the breaks between sessions are spaced out and shorter, which means less interruption between services. We can fill in 2-4 weeks off a few times a year with something. It’s the 2 1/2-month expanse of nothing in the traditional calendar that concerns me. Talk about a potential for regression!

Helpful answer to Reality #1 - The “Autism Underground” (pretty much what I’m calling the collective of parents around here who form the most elaborate support network I’ve ever seen) kicks in and offers everything you can think of to help you through those breaks in the action. We’d probably also try to get back in with his current therapy office during those breaks to keep the progress going.

Of course, we’ll also have the new home ‘classroom’ (still a vaporware DIY project). But since the recommendation is for 35 hours per week of total activity time (school + therapy services + work at home on therapy-related activities = 35), losing for any period of time what will make up the majority of that - school - will be rough. We’ll figure it out, but this has been a bit of sticker shock for us.

Confluence of unrelated events that may work to our benefit #1 - J-Man misses the kindergarten cut-off here by a whole day. This means he will be eligible for three years of preschool and not two, all because they couldn’t schedule Mary for induction in August three years ago. That could really work out well toward meeting our primary goal of getting to a place where he can be mainstreamed in a “regular classroom” and get near age-level developmentally by the time he starts kindergarten. Either way, much work lies ahead.

All that said, this part of the IEP process is like the preseason in NFL football. People go out and run a few plays and get acquainted with the game. It’ll be a couple of months until we put the pads on, but all signs so far lead us to feel optimistic that we won’t need to use them.

Little Man has decided that the WORD for cheese toast is Coco. He can’t say a “t” you understand. He walks over to the counter where the toaster oven sits, and says, “Coco.” That’s right, he SAYS it. Just to make sure I was understanding correctly the first time, I asked him if he could point to the picture of what he wanted… and he ran over to the food pictures posted in our kitchen, and pointed at the toast, with his index finger. Then I fell over into a dead faint and he revived me by sloshing cold tea onto my face and yelling, “COCO!”

For those of you not in the know, index finger pointing is very difficult for the J-Man, and for many autistic kids. They just don’t understand that the finger is pointing towards something. Lately we’ve had index, middle, and thumb pointing. As long as it’s not middle finger pointing at me, I’m for it. I still get him to point at the picture of the cheese toast, just to reinforce that the picture board is another way for him to communicate.

There have been a few days lately where J-Man has had 3 pieces of toast in a day, because I’m so thrilled that he’s asking for something so clearly… and I can’t NOT give it to him. He’s become quite the toast stealer in general – if I have toast for breakfast, I should just go ahead and make an extra piece because I know he’s going to take one of them. Me: “What do you want to be when you grow up?” J-Man: “Coco stealer.” Me: “Getting a head start on it I see…”

And for your listening and viewing pleasure, Heywood Banks and “Toast”:

[I just got my computer back from Apple Hospital, so finally I can quit half-assing work on my 7-year-old, 12" iBook, workhorse that it still is. ]

It’s been a good day all around except for the ridiculous allergies we’re all dying from. Mary’s parents, sister, and her two kids are visiting. All that and the weather today has been the kind of achingly good spring weather that makes people love North Carolina, except for that whole pollen from hell thing.

Anyway, since I don’t have time yet to post anything terribly interesting while my main computer is restoring from backups, here’s a preview of a few of the major things I’ve been working on topic-wise.

* Book Review: Daniel Isn’t Talking by Marti Lembach - It was the first ‘autistic novel’ I’ve read. What a wild wide it was.

* Turning my two-year-old into a one person case study of an autistic toddler - I’ve joined the parental practice of everyone comparing their autistic children’s traits. In the “normal parent” world, people compare in hopes of proving their child is smarter than yours. In my conversations with other parents of autistic kids, it’s a genuine dialogue about discovering each child’s strengths and weaknesses and comparing notes on how we’ve helped our kids grow. It also gives you a brilliant insight into the diversity in the autism community.

Anyway - I wanted to offer my (very lengthy) description of J-Man using as an outline the most typical (and stereotypical) characteristics for those on the autism spectrum. Maybe you’ll see something in there that helps you understand your child better and you can offer comments on suggestions for us as well.

* How we currently use the Picture Exchange Communication System (PECS) to help us since J-Man uses very few words. If you don’t know what PECS is, you will soon. (or you can click that link)

To give you an idea of where we’re headed with this site, our plans are to add some of what we hope are useful resources to parents going through a variety of issues related to autism, apraxia, sensory processing, speech delays, and so on. We’ll try to keep these as practical as possible and give you our honest opinion about how well various paths and practices have helped J-Man and us.

We’ve been at this in some form for two years. One of the therapists said we’re getting to where we could teach this stuff at Continuing Education workshops. I tell her, we’re just really motivated parents. Maybe we have something interesting for you, and I’m sure you do for us.

We’re working on the technical parts of how to actually show you on video or photos some of what we do during the day with him therapy-wise. We’ll show some of our therapy gear and what all we do with it. This may help the visual learners see in action what they read about in books. That may turn into a shameless excuse to show off his speech progress!

Our big adventure is that we’re going to turn our formal dining room (which we use neither for dining nor anything remotely formal) into a learning and play area for J-Man. We’re basically going to turn it into something like a therapy room you’d see at a pediatric therapy office.

This is going to be fun, and our therapists are brilliant at coming up with entire therapy kits without ever leaving the dollar store. We intend to build something brilliant - mutli-sensory, structured, de-cluttered, but full of free, crazy, creative stuff and so much fun any kind would love it - all on a tight budget that hopefully others can work from for their own houses and kids. We hope you’ll find following that project from beginning to end as fun and useful as we hope for while doing it.

Of course, I’ll be fixing some of the design borkage on the site, increasing the width of the content column, fixing the tag cloud, getting a better banner, and much more.

More to come. We’ll be resuming our normal schedule shortly.

[This unintended blog hiatus has been brought to you by a dead Western Digital hard drive. Thank you... Now on with the show via the second-string computer.]

Well, we got the autism evaluation report back yesterday, and while the official-ness of it is still hard, the report contained no surprises.

(For some background history, read “Autism Evaluation - Round One” and “Three letters that change your life”.)

As we’ve said before, the evaluation was done in two parts: an interview with just Mary and me, and then an evaluation with both J-Man and us. In the final report, he scored above the autism threshold in every area.

There are two things worth noting here.

1) Since J-Man’s only 2 1/2, the doctor said he doesn’t assign degrees to evaluations at that age. So no “mild”, “moderate”, etc. in this report. I think that’s fair. It’s just too early to get something like that. We understand that.

2) This doctor doesn’t give out PDD-NOS as a diagnosis. I respect that. Especially at this age, PDD-NOS is like saying, “hell if I know?” In his opinion, either you’re above the threshold or you’re not. There’s no “kinda” in this case. I appreciate his willingness to take a firm position and not leave it hanging in the air.

For people hedging on shelling out the money for a private autism evaluation, here are some of my brief thoughts after a day’s worth of hindsight.

• I feel like we got our money’s worth. We paid $1,400 for five hours of evaluation, feedback, and question time, so at that level of money, that should tell you that I was satisfied with the quality of the expertise we got.
• I feel like the report is an accurate assessment of where J-Man is right now. I also believe the report was well-written and will be just what we need when his IEP time rolls around.
• The doctor was straight up with us, and I appreciate that. I didn’t want to hear the outcome, but he was direct and honest with us. As we make our peace with it, that will help J-Man get what he needs. In the end, that’s what matters.
• Getting an impartial, outside opinion was essential - something we understand much better now than when we started this part of the process. Mary and I, our families, his therapists, our friends, and everyone else we know are just too close to him and us to give that kind of honest, impartial evaluation and opinion. Going completely outside that to get an unbiased, straight up opinion was completely the right decision.
• The report doesn’t change a damn thing about how we feel about him or look at him. Instead, we love him even more - how is that possible? - for how bravely he has faced his challenges so far. And that makes us more determined than ever to do everything we can to help him be the best person he can be.

Final verdict - if you think something is going on with your child, do what we did and get an evaluation. What you get out of it is an investment in both the short-term and long-term future for your child and your family.

I’m still working through a LOT of emotions about all this, but I feel strangely calm at the moment. This has been a rough few weeks, and sometimes I feel so tired I can’t focus my eyes. I’ve spent a few nights in bed staring at the ceiling, feeling panic coming on. I’ve been all over the place with it. I may feel determined, but that doesn’t mean I don’t have enough anxiety to kill an elephant sometimes.

That’s the news for now. More in the coming days and weeks, especially after I get my real computer back…

Dear Son,

How is it possible that you are our child? Just because you look JUST like me, except you have Daddy’s build (and bits), I still think maybe something happened at the hospital (even though one of us was with you the entire time, plus you had the baby lo-jack) and they gave us the wrong baby.

Why would I think that? You don’t nap. Mama and Daddy would kill for a nap most days, while you are quite willing to go weeks without napping. At this point I believe it’s been over 2 weeks since you napped. You just play in your crib, singing along to yourself and, as previously noted, chewing on whatever you can find. If Mama weren’t working, she would absolutely be able to nap while you were playing safely in your crib, but Daddy can’t. (Let’s face it, Mama is a champion at sleeping.)

Noggin is running a theme that talks about how much better the adult world would be if it ran like preschool. There would be naptime!

Anyway, please sleep so you aren’t cranky by 6:00 pm.

Love,
Mama

[ed. Hard drive meltdown = no blogging. Ack!]

We’re behind on Omega-3 / Fish Oil Watch posts. It’s been a rough couple of weeks, as we’ve covered.

I put ‘Talking’ and ‘Omega-3′ together in the post title with no small amount of uncertainty as implying that they are related may be a very big leap. I have no idea. I am not one to attribute improvement to any one thing with certainty without hard data to back it up. And in this case, I don’t have any data to support that his speech improvement this week has anything to do with his Omega-3 / fish oil for the last few weeks, so take it for what it’s worth.

Last night he had the best string of speech and communication we’ve gotten in forever, and that’s saying something after the great week we’ve had. This has definitely been his best speech week.

Last night - without any prompting from us other than “What’s this?” and some pointing - he identified his nose, mouth, eyes, neck, and ears, all right in a row! It was ‘no-no’, ‘mow-mow’ (rhymes with ‘cow’), ‘eye-eye’, ‘neh-neh’, and his version of ‘ears’ that is consistent but pretty far off from the actual word, but it was clear what he meant. Yes!

Then came the big finish. Clear as day, “I love you.” (’I-luh-you’) After a rough day with a melted hard drive and an endless string of personal and work crap to deal with, what an incredible gift! He pretty much melted me where I stood.

I’ve read several books on speech and speech therapy, and I’m not a bit surprised that the goal of many parents in situations like ours is to hear their kids say, “I love you.” It’s impossible for us to take anything like that for granted every time it happens. J-Man has been walking for about eight months after not doing it for almost two years, and I still feel joy watching him run. I know how hard he’s worked at everything, and every little thing is still an achievement even after he does it a few hundred times.

I’m writing this and I still get choked up about it. I am so proud of him!

[Seriously. This is him standing here typing.]

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y h nnmnm v c gm,. N b

nbhvhmnnbjjn v b b nb

So there.

Thanks to a UN Resolution (and props to the State of Qatar for leading the charge on this), April 2 will from here on be World Autism Awareness Day.

My first request would be to ask friends and family to observe today by becoming more educated about autism spectrum disorders (ASDs). The media have been cranking out human interest pieces about it for weeks and CNN - and perhaps others - are running comprehensive programming today about ASDs.

One thing to realize is that this is pretty much Autism 101 stuff, but it’s as good a place as any to start. Just keep in mind, sensationalism creeps into media reporting about autism just like everything else. There’s no substitute for researching, researching some more, and applying your BS detector to filter out politics and ego and separate fact from uncertainty from pure fiction.

Reading and research for us has been frustrating so far. There are so many agendas out there that finding good information upon which we can build a plan for J-Man is difficult. There is a lot of conflicting information out there. There is a lot of information based on God-knows-what kind of research. There’s so much the world doesn’t know that the vacuum is being filled by everyone with a theory or just plain wild ideas. The stakes are extremely high. As a result, it’s hard to know which ones to give more weight to than others once you get past the obvious bull.

Joining the ‘autism community’ has been like joining Christianity after living your whole life in another galaxy. It feels like people are dividing themselves up into denominations and beliefs about what causes autism and what will treat it or even cure it. Some hold on to these with the fervor of fundamentalism. This has been the saddest realization for me. We just want to help our son; we don’t need all this other baggage. And we don’t need agendas. And like Christianity, there are some things I don’t think these denominations will ever agree on.

So if I can put this forward for raising awareness, it’s that what you see and hear about autism is only the tip of a very large, very fractured, and very shaky iceberg. There’s no substitute for learning and time. It won’t fit into one day, but it’s a start.

Dear Son,

Yesterday we learned that putting you down to nap (HA!) without a shirt is a bad idea. We already knew that having you wear a shirt only results in you chewing it to the sopping wet point, and then being unable to sleep because your shirt is, well, sopping wet. Yesterday though, we learned that you were able to do something that we thought was impossible for everyone* to do - you tried to nurse from your own chest. The way we knew you had tried this? and tried HARD to do this?

You gave yourself a hickey on your chest.

While the point of hickies given by someone else has always escaped me (hi, you’re bruising me. Can you stop now?), I never would have thought anyone would do that to himself. It doesn’t seem to hurt you, and as long as CPS doesn’t come calling, nobody but us and the one other person who reads this blog will have to know… but seriously? Stop doing that!

Love,
Mama

*yes, yes, I know. I could probably do this. However, since I can also nurse around corners at this point, I truly don’t think I’m the norm.