[Ed. note - This boy loves his keyboard!]

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I cut J-Man’s hair yesterday. Go back and re-read that first sentence again so you can understand the enormity of that statement. I’ll wait.

[To really get the full magnitude of this, see previous hair installments here and here.]

I cut J-Man’s hair yesterday, and it looks decent. I cut J-Man’s hair yesterday, with clippers. I cut J-Man’s hair yesterday, and he didn’t completely flip out, although he wasn’t the HAPPIEST kid in the world. I cut J-Man’s hair yesterday, and although he cried a little bit, he didn’t scream, or scratch me, or try his best to get out of the chair. I cut J-Man’s hair yesterday, and I did a little touch-up this morning, and he was great about it. I cut J-Man’s hair yesterday, and ended up with a ball of hair bigger than my FIST, that the birds are now enjoying using in their nest building since I dumped it off the deck.

I cut J-Man’s hair yesterday.

I am MAMA, hear me roar!

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!

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.

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”:

[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!

I had a rough night last night. It was one of those cumulative sort of episodes where you stockpile stress and worry and get to the point where you have to empty some of what’s in that bucket to get to the next day. I’m sure that means I need to focus on better ways to deal with that.

Part of this is not paying enough attention to all the positives that happen every day. So before our big appointment today, let me tell you one.

Yesterday, he ate a mouthful of a peanut butter and jelly sandwich.

This may sound utterly trivial to a lot of parents, but this is the equivalent of me orbiting the earth without a spaceship. There are a number of textures in a PB&J that normally make him gag (the literal, retching kind). He didn’t look terribly excited by what he ate, but he chewed it and swallowed it - no taking it out of his mouth and handing it back to us in a panic.

He earns every triumph, and every one is cause for celebration. I needed to be reminded of that yesterday.

His word just before bed tonight - “love”.

He’s been trying so hard to say it. He decided that kissing us was going to be his ’sign’ for it in the meantime, but you could watch his mouth try to make the word. I don’t care how it comes out (”luh” with a slight ‘v’ sound on the end, in this case); he said it.

If you’re going through speech issues with your child, you know what one word can do to you. Some words - especially one word - go beyond what any of our own words can express.

Sleep well. I will.

J-Man has always been a music lover. For a long time, it was the only thing that would help him calm down and relax when he was upset or couldn’t sleep. Singing still helps with certain things, like attempts at teeth brushing, but songs or anything lyrical (like Seuss books) also help engage him into paying attention and doing a little talking.

We have a ridiculous number of music channels on our digital cable. One of them was playing James Brown’s “Living in America”. I would imitate (badly) James Brown’s trademark “ow!” and Little Man started saying “ah-ow” after me. We had a blast! Then came some serious father-son bonding.

The next song was “Brickhouse”. I would sing “Brick! duh, duh, duh, duh… house!” and he would say “ow!”

Mary was in the kitchen rolling her eyes. I was in the floor howling. J-Man thought the whole thing was hysterical. Now all I have to do is say “brick” and he busts out laughing.

There are days you’ll do whatever it takes to get your kid to talk. Might as well have some fun doing it.

Ow!

The word of the day is MoGo. That’s really two words. It’s a two-word sentence, asking for More of Ready, Set, Go!

My son used a two-word sentence! In response to the question, “What do you want?” when he was in his swing (see the pictures from Tim).

It really is the little things that make parents smile. I know there are a lot of parents out there who think something like “MoGo” isn’t anything to write home about – or to blog about.

It totally is.

MoGo. Word of the day!