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Still Progress

  • Posted on July 16, 2014 at 10:00 AM

Two steps forward, one step back. It’s not the kind of progress I want, but it’s still progress.

Willy got sick. He felt unwell for less than 24 hours. I got sick, too. I felt unwell for three days. Neither is particularly unusual. Willy has a robust immune system. I don’t. Willy inherited his from his father.

So far, neither Ben nor Alex has shown any signs of illness, though I suspect my mom might have it. Willy had gone over to her house to play, ended up getting sick, and then spent the night. Still, I was the one who came down with it second, after Willy. If my mom got it, she waited a few days before showing signs of it.

I may have been exposed earlier than her, but neither Mark nor the younger boys are showing any signs of it. It comes down to my physical weakness. It was a rather mild illness, as far as those things go, consisting of headache, a slight fever, and nausea. The weakness lingered for me, forcing me to sleep even though I was too comfortable to sleep well.

I had just gotten back on track to where I wanted to be, then I got sick—and I was forced to sleep—and got shoved off track again. My battle with my to-do lists is so tenuous it doesn’t take much. Losing a single day sets me off track. Losing three… *sigh*

The only thing that’s saving me right now is that I wasn’t going at my full pace. I wasn’t even trying to be full-time. So, in that sense, it should be easier to catch up. Of course, the reason I wasn’t going full-time was because I don’t have the strength for it, so I doubt I have the strength to “catch up” either.

Two steps forward, one step back. It’s still progress, but that doesn’t mean I have to like it.

The Cutting of Hair

  • Posted on March 10, 2014 at 10:00 AM

When we first learned about autism and sensory integration disorder, we learned (among many other things) why haircuts seemed so traumatic for the boys. Simply put, they seemed traumatic because they were traumatic.

I remember how the boys would writhe under the scissors or the buzzer (an electric hair clipper). It used to be that I would sit down and hold one of the boys on my lap, while my mom cut their hair as quickly as possible. We’d all get covered in hair, the child would cry, and it would end with us in a breathless, exhausted tumble of remonstration, remorse, and reconciliation.

Once we understood that, yes, they acted like haircuts hurt because, to them, it did! When we understood the impact of sensory integration disorder and ineffective communication skills, we changed how we did things. Mainly, we performed haircuts in short bursts and separated each burst of haircutting with intense sensory regulation strategies. The result was a little less trauma, but otherwise the same. As the boys grew older and stronger, it seemed—at first—that the only thing that really changed is that Mark was the one to get covered in hair instead of me.

Then, something miraculous happened. It started with Willy. You see, he started becoming adept at self-regulation. He gained more self-control. So, while he still put off haircuts as long as possible and continues to dislike haircuts, he became able to endure them to the point that he could sit for them himself, he could tell us when he needed a break, he could regain his own self-control, and could tell us when he was ready to come back.

Alex’s journey is this regard was a little less straightforward and isn’t as progressed, but he can also sit for haircuts by himself. He’ll let my mom know when he’s had enough. He’ll come back when he can tolerate more. He can self-direct his participation. And they can both tolerate the buzzer!

In Ben’s case, the story is a bit different. Becky, Ben’s therapist, took over the responsibility of cutting Ben’s hair. She volunteered herself and has kept it up over the years. The results are satisfactory and we trust Becky completely, so we’ve let her choose when to cut Ben’s hair, how to cut his hair, etc. So, she manages the entirety of the project. Ben still cannot tolerate the buzzer, but seeing as Becky does it all by herself—controlling the environment in which the hair is cut is one of her strategies—Ben, too, must be doing better.

When the boys were little, I despaired of ever reaching this point. I know there are parents out there who are in the midst of that despair. But things do get better. Hang in there!

God is Good!

  • Posted on August 21, 2013 at 10:00 AM

I rarely indulge in spiritual or religious announcements on this blog, but this time I simply cannot resist. As you may be aware, my family has been struggling lately. Things got especially difficult last month.

But after the darkness, there is light!

For starters, I have been admitted to Rutgers University and I will soon be starting my fall classes! I will be studying Public Administration and learning how to create the nonprofit organization that is taking shape in my mind. I’m very excited!

I’m also seeing more freelancing opportunities and earning more income. I’m at the point in my career where I feel like I’m holding one of those Magic 8 balls with the triangle telling me, “All signs point to yes.” With that thought, though, comes a Hitchhikers Guide to the Galaxy flashback—all I need now is to discover what the question is!

More than anything, I have to say that God is good, because I’m in much better spirits. Whatever comes, He will see us through. Along the way, we will know the joy He gives us. For now, that’s more than enough!

And, of course, the boys’ school is starting up soon. Willy is entering high school. Life is going to have a whole new normal for us to deal with. And I’m not even feeling anxious about it!


  • Posted on May 3, 2013 at 10:00 AM

I want my children to be able to go to college if they want to go. This makes me more optimistic.

Some Good News

  • Posted on October 29, 2012 at 8:00 AM

On Sunday, when I was on my way to doing something, I was stopped by Ben, sitting on the steps, fussing over his Kindle. Somehow or other he’d gotten on a Google page that was requesting he choose a language and he was frustrated because he didn’t know how to make the page do what he wanted—which was search for something fun to look at.

I tried to help him and he pinched me.

This surprised me.

If you’ve been reading my posts for long enough, then you know that Ben has behavioral issues. He’s aggressive. He throws tantrums regularly. He pinches, bites, kicks, hits, pushes, and otherwise misbehaves regularly. He’s gotten suspended for school for these behaviors.

But that was last year.

This year he’s going to a new school, with new teachers, new students, and a whole new approach to his programming.

I’ve been so wrapped up in Willy’s epilepsy and so wrapped up in Alex’s lack of progress and so wrapped up in the onset of bullying and so wrapped up in working on my book and so wrapped up in being sick from all the stress and poor sleeping habits that I didn’t notice that Ben’s behaviors had changed, not consciously.

Then, he pinched me. And it surprised me. It surprised because it had been a regular occurrence, and it surprised me because it was no longer regular.

Wow. This is big. This is huge!

And I almost missed it.

On Thursday, when I attended his school conference, I also learned something else surprising. Ben is now reading sight words at grade-level. That’s the phrase his new teacher used: “at grade-level.”

Perhaps this seems like a small thing, but none of Ben’s other teachers have ever used “at grade-level” before, because none of Ben’s other teachers thought he could do anything “at grade-level.” Obviously, he can!

And this is just the first conference at the new school! I wonder what he’ll be doing next?

A Step Back Moves Us Forward

  • Posted on February 10, 2012 at 8:00 AM

First off, I’m a terrible photographer.  There it is.  But, I’ve got a little story to tell.  And I’ve got pictures.  Bad pictures to be sure, but, like I said, there it is.

When Alex was a toddler, I fed him the same as any other toddler I’ve fed.  I used the plastic-coated little baby spoons and spooned mashed goodness into his eager little mouth.  Then, he used those same plastic-coated spoons and eagerly spooned mashed goodness into his mouth.  Somewhere along the way—kind of forgotten where—it stopped.  No utensils would go into that eager little mouth.

The mouth grew bigger thanks to food that could be eaten without utensils.  Crackers.  Eventually pizza.  Then noodles.  Yes, noodles can be eaten without utensils.


Alex with a fork with a noodle on it about to enter his mouth.

Alex with a fork with a noodle on it about to enter his mouth.


Alex bringing a fork with a noodle on it up to his mouth.

Alex bringing a fork with a noodle on it up to his mouth.

Alex getting ready to bite the noodle off the fork he brought to his mouth.

Alex getting ready to bite the noodle off the fork he brought to his mouth.

You can’t really tell (bad photographer, remember), but I am feeding Alex noodles using a fork.  He’d let the fork into his mouth, but didn’t try picking it up with hands—at first.  Then, he’d pick it up after I stabbed the noodles with the fork.

So, back to me feeding Alex; but forward, because it’s with a fork!