Blessings to you and your family!

One thing I’ve learned is that what actually ends up happening with him is far more astounding than what I dreamed of. He’s always full of surprises!

It is hard to dream sometimes, though, as we can barely see five minutes past where we are a lot of the time. We’re bombarded by so many negative messages about autism, and it’s easy to lapse into feeling that way when progress seems so slow or nonexistent.

But time and time again, the J-Man has called us out on this with his ‘watch what I can do now!’ attitude. One of the biggest lessons he’s taught me is to be assured of the things we hope for with him and be certain of him for all that we cannot yet see.

I realize that we haven’t really caught up our readers with our son’s progress of late. The holidays and my deteriorating wrist have put us behind on that.

In any case, J-Man’s receptive speech is clearly far better than we originally thought, and over the last few weeks his improvements have been startling. He is more and more able to give us some idea how much he understands us and is trying to communicate back to us using word approximations, syllable-by-syllable communication, and picture communication.

‘Syllable-by-syllable communication’ (my made-up term) has turned into a real winner around here once we pushed him toward it. With this, he communicates one syllable of a word using his best approximation, then we repeat it back to him indicating that we heard and understood him, then he continues with his best approximation of the next syllable, and so on. Following this approach, we’ve gotten through entire sentences, stories, etc. But most of all, we’ve been able to differentiate words for the first time.

For example, any word that started with ‘m’ used to be ‘muh-muh’ or ‘mo-mo’ or something like that, and he wouldn’t go any further. Now, for example, ‘monkey’ goes like this:

[Note - he tends to get a smidge echolalic with syllables.]

J – “Muh-muh”
Me – “Mon”
J – “kee-kuh”
Me – “key!”

And ‘many’ might go like: “Meh-muh”, “Meh”, “Nee-nee”, “Nee!”

There are still many sounds he cannot make and others that he struggles to make clear or differentiate from others, but we are really getting somewhere, which is awesome.

His recognition of letters and sounds, which extend into being able to read multi-syllable words (again, expressed using this syllable-by-syllable method), increases by the day it seems. He rapidly goes through most any sight word card we give him. The other day he was trying to read stuff off the TV screen. We’ve been really working on this both because of his rapid growth in this area but also just because he really seems to love words and letters.

The main stumbling block with typing and other augmentative communication devices is that he’s – for lack of a better word – a ‘button masher’. While it’s some better lately, he can easily fall into perseverating on pressing buttons or getting so overexcited about seeing letters appear on the screen that he goes into a full stim and is unable to really go any further with it. It’s hard to draw him back in after he presses ‘K’ 20 times while doing his whole-body stim.

That said, this is something we’re going to keep reintroducing on a regular basis. I do think something aug comm-related is in our relatively near future. His speech is showing good improvement lately, but we’ll be employing various methods of communication for a long time I’m sure. I hope this is something we’ll be ready to explore further at his next IEP meeting, which is still about 8 months away.

With autism, the language we use about it and our kids has the potential to be so loaded and so easily misunderstood. There’s the endless back-and-forth about ‘autistic child’ vs. ‘child with autism’ and then all the emotion-filled conversations about ‘neurodiversity’ and ‘cures’ and so on. How we talk about things in blog posts, the media, books, or everyday conversations can be pretty high-stakes, and I so wish it wasn’t.

Because of that, the emotions themselves become part of the language. When you talk about fear and sadness, many immediately assume those are completely negative emotions that show how painful and tragic autism is, which is completely opposite the point I’m making.

I tell some parents that this is the biggest challenge of my life and it’s often heart-rending to watch our son struggle so hard, but this is also the most rewarding thing I’ve ever done and I wouldn’t change who he is nor would I trade my life for all the riches in the universe. Often they look at me like I’m crazy. If I am, so be it.

As I think you all have figured out and I hope others do too, sometimes our best move is to see fear as fear, sadness as sadness, and hope as hope, be honest about how we feel, and not try to weave an entire interpretation of what to ‘do’ about autism as a result of those emotions. I think we’re sometimes better off just trying to ‘be’ rather than ‘do’ all the time.