Showing posts with label autism. Show all posts
Showing posts with label autism. Show all posts

Sunday, June 28, 2026

Alexa Succeeds Where I Fail (Parenting)

Thinking about "task interruption" and "transition warning" and "neutral third-party" and "unconscious conditioning" I've stumbled onto something that's been really helpful with our non-verbal child.

 

There will be times when he needs a diaper change but doesn't want a change.  If I'm pretty sure he needs one but I ask him and he says no, I'll ask "do you need a timer?" and he'll respond affirmatively.

 

I'll say "Alexa, set a timer for x" where x is anywhere from 2 minutes all the way down to 2 seconds, depending on what his mood looks like, it he needs a cooldown or if he's already 99% ready to go.

 

When the timer goes off, he often hops right up and goes to his room. Sometimes I'll have to point out the timer has gone off, but then he's compliant and we'll go in and get the diaper taken care of. But because it's not me making the demand but Alexa, he can't fight or protest. (And he knows Alexa will just keep sounding the alarm without getting tired until we turn it off.)

 

(When we were recently on vacation, I didn't have Alexa and I had to mimic the Alexa voice and the doo doo doo sound myself but it still worked.) 

Friday, January 23, 2015

The gates have been breached

Since Rachel was able to walk, gates have been a part of our lives. There may have been a brief period without them before Ben was born, but I can't recall. We own quite a few of them.

Ben's autism deprives him off a sense of his own safety which means we really have to be careful with what he has access to - lots of doors and cabinets with locks on them, and until recently, gates as a way to limit access to an area (or keep him in an area).

Over the last few days he's realized that he can just throw a leg up and then hop right over. He's been seeing us do it for years so I guess he finally decided he ought to try it.

So, back to the drawing board - move more stuff out of the kitchen, more locks on drawers and cabinets and maybe some solartubes ($$) to lighten up the hallway which is deathly dreary with all the doors shut and locked.

Sunday, June 01, 2014

Yes and No (Life with #Autism)

We've been observing more spoken language with Ben. It's a really slow progress, and I think we can consider "no" crossed off the list - he'll use it to announce displeasure, defiance and sometimes to answer questions in the negative.

But "yes" (and "yeah") are newer. At night when getting him ready for bed I'll use iPrompts Pro to offer him the choice of crib or bed and Verbal Me Free for yes/no questions like "Do you want guys (stuff animals) in bed with you?" and then "Do you want your monkey/puppy/Mickey/etc."  He'll usually press yes or no. Not always with care and sometimes just a swipe at the screen but if I guide his hand, he'll indicate what he wants.

Today there were two instances where he answered me affirmatively verbally. I can't remember one of them, but the other was pretty cool: I had offered him a pair of gray socks and a pair of blue socks. He took the gray pair and I confirmed "Ok, gray socks." As I went to put the blue ones away he said "Other" and I said, "Oh, you want the blue socks" and he responded "yeah."

It may not seem like much if you're parenting a typically-developing child, but for Ben, this is a huge step and exciting for us.


Friday, March 21, 2014

Feed Sift (03/21/2014)

Five things from around the web I felt like sharing...

-1-

THE INCLUSIVE CHURCH -- 5 Strategies to Include Teens with Special Needs

-2-

FRESH ADDRESS -- Image Caching: What's New In Gmail - how Gmail's image caching will affect your email campaigns

-3-

DINNER LAB -- About Us - I would so want to do this if I had money, the ability to go out at the drop of a dime, oh, and lived in one of the host cities. (Would speak to my "serendipity" goal

-4-

LIFEHACKER -- This Infographic Reveals the Secrets of the Happiest Couples

-5-

ADDTHIS -- This Infographic Reveals the Secrets of the Happiest Couples

Friday, March 14, 2014

Feed Sift (03/14)

Five things I wanted to share...

-1-

The Questions That Will Save Your Relationships

-2-

What the Seahawks Can Teach Parents and Kids Everywhere

-3-

Four Habits of Punctual People

-4-

Forgotify - 20% of the Spotify library (over 4 million) has never been played. This player will help you discover music that deserves to be heard (and some that probably doesn't).

-5-

Including Teens with Special Needs – Parent Partnership

Thursday, March 06, 2014

Guest Post: Iowa Stubbornness

From Lori's blog...
And I tell you what, he would not sit for anything. He didn't want crackers, he didn't want Bugles, and he didn't want to sit. Mostly he wanted to stare at his own reflection in the microwave and tell himself how awesome he looked, but then he wanted to just move around the room and do his own thing. 
Read the rest on Last Person Blogging...

Sunday, March 02, 2014

Book Review -- Speechless: Finding God's Grace in my Son's Autism

Speechless: Finding God's Grace in my Son's Autism by Sandra Peoples

To glance at the reviews, I'm in the minority, but I would probably only give it 1 or 2 stars.

The first premise you must accept when you read this book is that there are two very distinct kinds of autism. I'm not saying I don't, in fact it makes a lot of sense. Well, frankly, there's actually a wide range and that's why it's called a spectrum, so please forgive me if I simplify slightly to begin.

The first kind: exhibited as developmental delays from the start. Often diagnosed first as PDD-NOS and later Autism or a similar diagnosis. This is what Ben has.

The second kind: the child begins life seemingly typical and then at a certain point, takes a turn for the worse. You see a regression in development or mental ability. There's some argument about whether these are truly cases of Autism or some other condition altogether, such as Landau-Kleffner Syndrome, a disease often misdiagnosed as Autism. Children who suffer in this way (regardless of what you call it) often lose the ability to communicate verbally but respond well to medication and treatment and many regain lost skills. This type of scenario often leads parents to blame vaccinations for their child's autism. In cases like these, a change in diet can greatly improve if not "cure autism." This is where those "Defeat Autism Now (DAN)" doctors come in. (This is where crazy Jenny McCarthy lives, if her child even has autism.)

So the child in the book has this second kind. He has trouble with bowel movements, and a change in diet makes all the difference. And within a year, the child has rebounded. So this book is short - both in the time covered and in its size.

In it, the mom fights with doctor after doctor until she finds one that will believe her child is indeed suffering. She works on their family's diet and the family goes through the adjustments to living with a child with autism. But after one short year, it's almost as if the book has a happy ending. But families with children who have a lifelong disability (some children, diet or no, do "catch up" and lead fairly typical lives) don't have a "happily ever after" to look forward to.

The book does talk about some good things people face: the different pace at which family members come to grips (if they ever do) with what you're going through, the alienation and disappointment when you're left out of things, the strain it puts on the family and how other siblings are often short-changed. And there's also validity to making changes - we know for certain that Red 40 has a big impact on both of our children and we've cut out nearly all dyes from our children's diets (and we're being more conscious ourselves).

And an absolutely salient point: the biggest fear in the life of a special-needs parent is their own mortality. If this life, little as it is now, is going to need care for the rest of their life, what will happen to them when they die? They were looking at their son's brother, age 6, and thinking about how their little boy would someday be his responsibility.

So while the author does explore a number of topics, I felt it was too brief, too neat, and in some ways, offers the wrong kind of hope to others who might find themselves in similar situations.

Not that we shouldn't provide hope, but that we should also be real: for whatever reason, God has chosen to place a child in our lives who does not see or experience the world in the same way that most of us do. And that means, in our case, they can't comprehend threats to their own safety, they don't engage with others in the same way, and unfortunately, there are plenty of people out there who will judge, exclude, ridicule and just generally not bother to become informed or stay in our lives because it's too much work. Because it is work. But our child is still a blessing.

But it's a challenge day in and day out. We've had valleys in our life and we've learned to trust in God because we've seen the other side, we've seen the mountain tops. But here's a case where it's like a valley with what feels like a much lower likelihood that a mountain (as we've experienced them before) is the natural destination.


Speechless: Finding God's Grace in My Son's Autism (Amazon.com)

Saturday, March 01, 2014

Worth Repeating: Rupal Patel

Video:



Rupal Patel - Synthetic Voices, as Unique as Fingerprints: Many of those with severe speech disorders use a computerized device to communicate. Yet they choose between only a few voice options. More on TED.com...

Why I'm Posting: You've probably considered being an organ donor. But did you know you could be a voice donor? As the parent of a non-verbal child, this video made me get a little teary.

Friday, February 28, 2014

Feed Sift (02/28)

Five things I saw recently and wanted to share.

-1-

Dilbert - he needs to be careful, he's starting to sound Like A Boss.

-2-

Nix Tape: 10 Closed & Abandoned Blockbuster Stores - a beautiful article with glorious photos. (No love lost for my former employer and this outdated technology.)

-3-

Say it loud and say it first - Southwest, Delta and United Airlines in for a win. (Yes, I did say United.) Remember, first-mover advantage still works when it comes to marketing and PR.

-4-

T-Mobile's 'Mobile Money' blends prepaid Visa cards and no-fee checking features - fascinating... a bank for the bank-less.

-5-

Including Teens with Special Needs – The Challenge - I like the thought behind this.

Sunday, February 23, 2014

Book Review: Understanding Your Child's Sensory Signals

Understanding Your Child's Sensory Signals: A Practical Daily Use Handbook for Parents and Teachers by Angie Voss

I bought this book for Lori for Christmas off her wish list. It's part of the Amazon Matchbook so I was able to download it for the Kindle as well for free, that was kinda nice.

This is a pretty dense book that covers a lot of the behaviors you'll see in children (and adults) with Sensory Issues. For each, there's some information about why a particular issue or behavior and then some suggestions on ways to accommodate, address, divert or support a particular behavior. Sometimes the behavior is an emerging skill you want to encourage but other times, it's a behavior you want to curb. In some cases, the behavior may be embarrassing to you, but it's part of who they are and the author says to let them have it, and I really appreciated that.

I'm not sure the best way to use this book - possibly a reference guide for looking up specific behaviors or traits. Since I had it on the Kindle, I just read it through from cover-to-cover. Occasionally the author uses a term that seems specific to her. I don't want to say "invented" but it's not a common term. I found this out when I went to research it on Google and the top links were to her website. In some ways, I was surprised she didn't mention her website more, but that's probably better than the flipside of aggressively hawking you website. (If this were re-printed, I'd probably recommend adding the URL to the footer where it's unobtrusive, but handily standing by.)

I also discovered reading through it that a lot of the tactics are similar. I don't think that's a bad thing, but it's interesting to note. Also, not all are appropriate for all children. For some, your child will need to be verbal or understand the objectives. She describes one called "bubble mountain" which involves blowing into a pan of soapy water with a straw. Our child would probably try to drink the water. He hasn't mastered the straw, but he sees his sister using a straw to drink, so his first inclination would be to try to draw up the water, rather than blow slowly in the attempt to create an ever-growing mountain of bubbles.

One thing that really struck me was that she says you shouldn't do hand-over-hand that it isn't helpful and is possibly harmful but I didn't think her explanation was satisfying. Same with tickling - she was very much against it. But for us, it's something he enjoys and also the safest and most consistent way of distracting him when he's being angry and lashing out at us.

There was also a behavior or two we've seen in our child that was never addressed in the book. I would expect it's common (but rarely discussed amongst parents) but it never came up in this book.

All-in-all, it was a helpful look at all the different types of sensory issues our kiddos deal with and how lucky we are that our child is so willing to engage us and how there's so many typical sensory issues that our child doesn't suffer from. Also, it explained some quirks my wife and I wouldn't have otherwise noticed about ourselves and definitely some traits our daughter exhibits that we would have never guessed were sensory issues otherwise. It's probably a handy little guide to get and hang on to if you parent or teach or work with someone who has sensory issues.


Understanding Your Child's Sensory Signals: A Practical Daily Use Handbook for Parents and Teachers (Amazon.com)

Monday, February 17, 2014

Guest Post: Recently in the hospital...

We were back in the hospital recently. Here's Lori's recap of what happened.
It's awful when you have to see your child in a hospital bed. But it's worse when it was your own carelessness that put them there. Read more on Last Person Blogging...
I know this was a difficult post for her to write. There are always lessons we can learn, but sometimes you just think something is obvious or it couldn't happen to you. It did, so please at least take away from this that things do happen and one can never let their guard down. (Use this as a cautionary tale and learn from it.)

Saturday, January 11, 2014

iPad Project, Day 1 (Life with #Autism)

We recently applied for a grant from a local non-profit for an iPad for Ben. We were accepted and today I picked up the iPad. Now, I have a work iPad, but this is different - it's not so much about the iPad, but the apps. Next week we get apps, also a part of the grant - apps specifically identified by Ben's speech/language therapist. So today they gave us what appeared to be a refurbished iPad 2 with iOS 7 (the guy next to me appears to have gotten a 3 or at least one capable of Siri but with iOS 6).

I had tried free apps before on my work iPad with little success, but it had been awhile. So today, with the new iPad (in a massive Otterbox Defender) I downloaded some free apps again and did some hand-over-hand on the screen. He seemed to get the idea of touching buttons on his own, especially when the screen simply showed a big yes and no. When I asked him if he needed to use the potty, he made it say yes (after several swipes at the screen) and so we went upstairs, I put him on his seat and he went immediately. I'm not going to claim some amazing breakthrough, but that was pretty cool.

So I'll probably work a little more with him on the free apps this week and next weekend, we'll get the specifically recommended ones. Excited about that.

Thursday, December 19, 2013

Tool Use (Life with #Autism)

So it only took who knows how many battles, but I finally have started seeing some success with getting Ben to try new foods and more importantly, use a utensil.

There's lots of good foods, but if it doesn't look recognizable to Ben, he won't eat it. Never mind if it's awesome like pizza or ice cream.

But recently we've been trying to get him to eat eggs. He will sometimes eat eggs, but we've been trying to get him to eat them with a fork because it's less messy. But he won't take the fork, he fights, resists, won't open his mouth. Even with the offer of bacon (BACON!) he won't do it.

The other night after everyone else left the kitchen, I finally got him to start eating egg. I thought it was the reduction in the number of people in the room. A few nights later, I was in the middle of fighting with him and I had a realization about what really probably was a working factor.

Tuesday, November 19, 2013

Guest Post: One Year Ago (Life with #Autism)

Lori's post from last week:
One year ago today was the worst day of my life. It was the day that I walked in to Ben's bedroom to get him up for school and found him unconscious on the floor after vomiting during the seizure he was still experiencing. We didn't know at the time what was happening, but rushed him to the ER in town... Continue to Lori's Blog...

Wednesday, November 13, 2013

Guest Post: Unforeseen Dangers (Life with #Autism)

From Lori's blog...
I'm blogging a lot about our children lately. I guess that's because they're a big part of my day, and my emotion is often driven by what's going on with them. Last night, I was upstairs when I heard the worst kind of shriek, followed by scared crying. If you're a parent, you probably (unfortunately) know that shriek - the "I hurt myself and it's still hurting, and I don't know what to do about it" panicky cry. I ran down the stairs... Read more...

Wednesday, October 30, 2013

Teeth Brushing (Life with #Autism)

Ben is not a big fan of toothbrushing.  He'll mostly just want to run away.  But I've found a safe way to hold him that does the trick.  (Of course, he still mostly just wants to suck off the toothpaste, but I'm at least able to get the brush moving around in his mouth.)

We're normally in the bathroom, but one night we were brushing in the kitchen so I asked Lori to take a snap.  I have him stand on his stool, or in this case, a chair.

I take his hand and hold it behind my back.  I don't have to hold tightly, he likes holding hands.  If he pulls away, I can tighten my grip on his hand.  If he pulls a lot, or feels like he's going to jump, I can let go quickly and there's no risk to hurting him.  But he rarely pulls away, he often will just lean into me, like a hug.



Now if we could just get him to be ok with flossing.  But then, even I don't really care for that.

Tuesday, October 22, 2013

Guest Post: Watching Ben in P.E. (Life with #Autism)

LAST PERSON BLOGGING -- I had a chance to sit in on Ben's P.E. class on Monday. The physical therapist leads the Monday class and gives assistance and directed tasks for the children to follow. She had assessed Ben in September and he qualified for the PT assistance, and she invited me to come visit to see how they do things. I was surprised by the roller coaster of emotions that I felt while I was there. Read more on my wife's blog...

Tuesday, October 15, 2013

Guest Post: Letting Go of Dreams (Life with #Autism)

LAST PERSON BLOGGING -- When we found out that Ben had significant delays in nearly every area of development, we went through a grieving process. We had to let go of a lot of our expectations and hopes and dreams for him. We realized that life for and with him would probably not look like what we had thought it would. Growing up and making friends, playing with other boys at recess, having conversations and other things as basic as those are the things that I dream and hope for Ben now. Continue on to my wife's blog...

Thursday, September 26, 2013

Sense of Loss (Life with #Autism)

Rachel stood there crying uncontrollably. The pain was physical, but it was also emotional. As she sobbed, she kicked out at her brother. Repeatedly.

Kicking at him, but not kicking him.

Haltingly, through her tears, she gasped "I... want to... kick him... but I'm not."  Still, balancing on one foot, her other foot flew out wildly, just stopping short, all she had in her not to connect.

I'm stroking her hair, rubbing her back, hugging her, trying to console her, trying not to cry myself. If she had kicked him, I'd have a hard time punishing her. Lori's holding onto him and trying to get him to see her tears. It's unclear if he understands why she's crying or if he knows and doesn't care.

And now, what I deride as an overused plot device...