Developmental Delays

There Are No Shortcuts – Ideas For Making Better Therapy Decisions

by Tim on August 14, 2011

This is a post about how we can make good decisions about therapies for our children. But first, I need to set the scene a bit.

The details of your story and ours may vary, but the emotions from which most all parents make decisions about therapies are very similar. I believe you’ll make better choices about therapies for your child if you grasp where you are emotionally with all this. Once you do, you’ll be able to decide from a position of strength and know what warning signs to look for, a list of which I include later in this post.

Our earliest days in therapy with our J-Man – starting with feeding therapy around nine months old – had one consistent theme.

We figured that at some point it would end. He’d learn what he needed to learn, and we’d move on. Therapy was merely a detour in his childhood development. He’d figure out how to eat and overcome his sensory issues, and we’d get back on the road with life.

Almost everything at that point sounded so foreign to us, as it does to everyone when they first get on this road. If it didn’t seem invasive or completely hokey, we at least considered it. We got him the various array of standard therapies for issues with names I’d never heard of, which was admittedly about everything at that point.

You always start out in near total ignorance. We did plenty of research and learned that a surprising percentage of people – kids and adults alike, including Mary and me – struggle with feeding issues, sensory overload, motor planning challenges, and the like. For a while, it was all very interesting, like some research project. The various things we read said he’d likely either grow out of his sensory and eating issues or retain some level of them, but with therapy and some effort he’d be able to adjust well. Sounded OK to us.

But we sorta skipped over the parts that said that other issues may be going on along with the sensory challenges. He was a loving child who’d been late on a few milestones – OK, so a lot of milestones – but no big deal, we thought. He was just having a lot of sensitivities and difficulty figuring out the world. A lot of us do. In hindsight, it’s easy to see everything we missed – or that we refused to see – back then.

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The Second Time Around – Having a Child Not in Therapy

by Tim on March 18, 2010

I realized the other night that the second anniversary of what we’ve called Diagnosis Day is upon us. On that gray, March day two years ago, the doctor said the words “diagnosis of autism”, and we jumped down the rabbit hole into this grand adventure. It’s hard to comprehend how far we’ve come in those two years.

But really it started long before that. The J-Man began feeding therapy at 9 months old. We had an evaluation just before that through our county’s child developmental services agency because he was showing significant sensory aversions not only to food but to all sorts of other things. He seemed ill at ease with many things around him. Something just didn’t feel right to us.

The evaluators referred us to a feeding therapist, and off we went on a road of diverse therapies that’s run the gamut of acronyms and has continued ever since. A little over a year-and-a-half after we started that first feeding therapy, we took the on-ramp onto the autism highway, and here we are.

Dale Jr. is now about 10 1/2 months old. It has been like learning how to parent all over again. He eats everything in the house; there’s almost nothing we give him that he won’t eat. We still catch ourselves being completely amazed by how well he eats. He even self-feeds finger foods. He mimics us, uses a few words and signs a little bit, intentionally asks for some things, and shares his interests with us. He’s proving to be quite a daredevil, he explores everything, and he wants to be the life of the party wherever he goes.

We’ve noted many times how very different they are. It’s a wonderful thing to have two such complex, wonderful, and unique little people in our house!

And he’s about the age we started the J-Man in therapy. This fact isn’t lost on us. We are so programmed at this point to look at every part of our day in terms of the therapeutic that we sort of don’t know what to do when things are just moving along fine with one or both of the boys.

I realized that we’ve been at this a while when I praised the baby for his skillful bilateral coordination and object transference and developing his pincer grasp so rapidly (which is wonderfully useful as he eats Cherrios on his own while we do kitchen chores). I have no idea most times whether he developed any of these or other skills ‘on time’ or not, though from a few years of therapies I know the technical names of many of them.

The term ‘developmentally appropriate’ is usually lost on us. I’m not sure we’d know it if it bit us. Perhaps we’re becoming more at home with the mystery of it all. Our two boys have changed us in very different ways, and we know we have more mysteries still ahead of us than we do behind us.

As they say, “‘Normal’ is just a dryer setting.” We get the privilege of experiencing a completely new parenting adventure, and we have two wise little teachers who will help us learn and value all the diverse and beautiful gifts that make us human. The J-Man does things that boggle our mind. He’s only beginning to manifest many of his incredible gifts, but he has already changed the lives of so many for the good, especially ours. And Dale Jr. is quickly following him down that path.

We have two boys who share perhaps the most important gifts of all. They are loving and kind, they brighten every room they enter, and everyone who meets them loves them immediately. Regardless of where the adventure takes us next, we start from this foundation, from which anything is possible.

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Leap Days and Our Children’s Unchartable Development

by Tim on March 14, 2010

Child development books typically portray your child’s growth as a gradually, but steadily, up-sloping line described in neatly organized groups of milestones and checkboxes. Days like yesterday promote the idea that a book about autistic child development would be rather like taking a bucket full of checkboxes, strapping that bucket to a roller coaster, and then hitting the big red Launch button. Needless to say, with the J-Man we threw that book out long ago. It was too stressful, constraining, and not helpful anyway. (One funny sidenote – he actually likes to sit on the couch and thumb through the Your Child’s First Year development book. We’re still not sure what he gets out of that.)

We can spend weeks at a time struggling to get over what seems like the smallest hurdle, though we all know there is no such thing as that in our worlds. The last couple of weeks in many areas it feels like we’ve gone backwards. Then you have days like yesterday where things come seemingly out of nowhere, and you have no idea how they suddenly sprang up. Sometimes we refer to these as ‘quantum leap days’, or ‘leap days’ to keep it simple.

So yesterday the J-Man:

  • Fed the baby!!! With a real spoon! With real food on it! And with a great deal of care! We helped him scoop the baby food on to the spoon, and then he did the rest himself moving it carefully to Dale Jr’s mouth, which he accepted with open mouth and unblinking eye. Mary and I almost both fainted.
  • While we were outside swinging (beautiful day yesterday too!), I asked him whether he wanted to go inside now or do more swinging. He replied without hesitating using our syllable-at-a-time verbal exchange method that we’re trying to invent a term for, “I want swing.” (his verbal approximation is close to “ssss-wuh-eee”) Wow!
  • On top of that, he actually walked to the swing by himself. It did take some coaxing and he wasn’t super happy about it, but he did it. Normally we have to carry him out into the backyard or he has a meltdown on the back porch rather than walk out into the yard without being carried. Again, he wasn’t pleased but he did it!
  • While sitting at the dining table, he said (again using our syllable exchanging) “May I be excused?” No kidding. He learned this from a Signing Time video and The Blessed Lady Rachel Coleman long ago, but he said it this time actually at the table in a contextually appropriate way. Woot!
  • He went to the kitchen sink and reached for the faucet, which I’ve never seen him do. He said, again a syllable at a time, “I want wash.” Wash hands! After getting over my surprise, I told him we needed to wash hands in the bathroom, which wasn’t what he had in mind at first but then was fine with it. He did want to hang out and play in the water, so we ended up washing hands twice but stopped it there. Still not sure why he asked – his hands weren’t really dirty – but hey, we’ll take it!
  • He was very cuddly with Dale Jr. in a way that’s showing he’s relating to him more as a person and brother now. He’s been doing this more and more in recent days, but he was very sweet with him in particular yesterday. The J-Man kinda burrows up next to him. I know this is in no small way a sensory-seeking thing, but you can see more and more how he enjoys the baby’s company. And of course, Dale Jr worships the ground he walks on already.
  • All about the ‘family pile’ -The J-Man wanted us all to ‘do pillows’ yesterday morning, which usually involves just one of us resting in the floor on a pillow – or a pile of them – with him. When he indicates he wants this, he’s asking for a sensory break and for help regrouping. This time he started pulling us all into the floor with him, baby included. One could say he was arranging us as his sensory aids, but we could tell this was more an intentional, affectionate act. He didn’t seem particularly out-of-sorts sensory-wise; he just wanted to be close to us.

What was particularly awesome is that these involve two areas he really struggles with: communication and interpersonal relationships. That makes these achievements all the more sweet.

After hundreds of iterations of practice to help him acquire a new, simple skill, sometimes he comes out of nowhere with something that you don’t even remember practicing. Then there are others you know he’s at least seen or heard before if not drilled repeatedly on it, but no matter how much you’ve tried to coax it out of him he may not respond until one day he just up and does it on his own with no prompting at all. There are others still that have involved epic meltdowns on every attempt until one day it seems like a switch got flipped. This is both the mystery and frustration of autism, but to me it’s also one of its greatest wonders.

There are plenty of days – perhaps most of them – where waking up and having no idea what might happen is a scary prospect. Sometimes what we fear comes true, and sometimes we get something different entirely. And then there are days like yesterday with plenty of the challenging autism things still happening, like trying to shepherd his easily overloaded sensory system through the day, but in between all that we discover little furrows where seeds landed unnoticed, scattered there by some unknowable wind or force, which grew hidden for a long time and then suddenly burst forth.

We’ve made it to the season of light and growth and bloom, and finally we have some warmth after a long, cold winter. That doesn’t guarantee anything, except that today, anything could happen.

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Goodbye to the Aughties

by Mary on January 4, 2010

Thank goodness. We can say goodbye to the Aughties. Except for me. I’m trying my best to say goodbye to the Oughties instead. Good riddance Oughties!

You know – the Oughties. He ought to be able to do this by now. He ought to be speaking in sentences. He ought to be able to say entire words and not just word beginnings. He ought to eat more than the same 6 foods he’s been eating forever. He ought to be able to get his hair/nails cut without freaking out.

I don’t actually watch the show “Desperate Housewives.” I DO, however, turn the TV to channel 211 every night before I come upstairs, because that means the DVR lets me rewind Good Morning America to the beginning to watch while I’m eating oatmeal the next morning. Last night though, I turned it, and watched about half of Desperate Housewives because I got sucked in. Remember though, I didn’t see the beginning of the show, and I don’t know the characters. Here, I’ll go to imdb.com to look up the characters because otherwise I’ll be talking about “some mom” and you won’t know, because I didn’t know. Hold on…

OK, I’m back.

So, when I turned it on, for some reason Gabrielle’s husband is trying to sneak their daughter off to camp. Something about getting her away from auditions. Blah, blah, lots of crap where mom wants daughter to be something she’s not… and eventually Gabrielle realizes that her daughter doesn’t have to do anything special to be special… she just is. Nice. I liked that.

This next part though? I literally sobbed.

So Lynette is in the hospital because something is going on with her pregnancy. She dreams about what would happen if the doctors came in and told her that the baby was going to be handicapped. How would she make it? She dreamed three separate vignettes – the first about making the baby do painful physical therapy, and I started crying then. She was upset because the baby wasn’t meeting milestones, and the therapist said something I’ve heard a bazillion times. “Don’t think about what he OUGHT to be doing. Don’t compare him to other children. You’ll drive yourself crazy doing that. Focus on HIM, and what he IS doing.” Lynette had to walk away, and her husband followed her. He told her to think about the future… to think about how she would feel if she knew she hadn’t done everything she could to help this child. Lynette walked back out to the living room, and took over again from the therapist. “I can do this,” she said.

Yeah, this is me sobbing. So teary even now that I can barely type.

The next vignette was of her son, about 10-12, who comes into the kitchen and demands a sandwich. Lynette is busy, washing dishes, and asks him to wait. Kid gets belligerent (as a pre-teen will), and eventually she tells him he can make his own sandwich. Kid has the curled hands and crutch associated with Cerebral Palsy, so I’m going with that being the disability. Lynette refuses to help him, and he does make a sandwich… with much drama (being a pre-teen) but also, with much difficulty because of his physical limitations. She stands there, gripping that sink until her knuckles are white, refusing to turn around… and he succeeds. It’s so incredibly hard for her to force him to do something difficult. We all want to make things easier for our kids.

I’ve been that mom. Both of those types of vignettes. I’ve been there. I hope I handled it that gracefully.

The last vignette is of her son graduating from law school. He thanks his mom, because she refused to give up on him.

That’s something we hope can happen someday with the J-man. Not necessarily that he go to law school… but that he understands why we push him the way we do. But that is still a long way away.

But he will succeed in his own time, and in his own way. I ought to remember that.

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Mama Guilt from Listening to “Experts”

by Mary on July 14, 2009

Background info: we’ve pulled out lots of the J-man’s old toys for Little E to play with/watch lately. (Little E won’t be little for much longer. Maybe we should just call him Dale Jr.)

When the J-man was about 21 months old, we had a “full evaluation” from the county. They came to our house – a doctor, a developmental therapist, and one other therapist person. It still rates in my mind as one of the hardest days we’ve ever had, and I’m including when we all had the Norovirus and the J-man was hospitalized.

The things that stood out were this:

1) the doctor YELLING at the J-man when he wouldn’t comply with the tests. Hey, I wouldn’t want to pick up your stupid dolly either if there is a cool car with spinning wheels available. (We heard through the county grapevine that the doctor was eventually reprimanded because of his behavior during that evaluation, to give you perspective.)

2) the J-man wowing them with some of his skills

3) the J-man NOT wowing them with skills it wouldn’t have occurred to me he should have been able to do at that point.

4) the way everyone danced around the word “autism” until I flat out asked them if that was what we were dealing with. (“We don’t really know at this point, but don’t think that’s it.”)

and

5) the way the evaluators made us feel like the world’s worst parents for allowing the J-man to play with the toys we had out in the living room. No kidding! They told us that the reason he was testing behind in several areas was because his toys weren’t advanced enough. We were holding him back! It was our fault! If we had just gotten him better toys, he would be fine! (All of those toys were in fact made for kids up to age 3, but I digress.)

That night (after I cried), we packed up most of the J-man’s toys and put them in the attic. No more “World of Learning;” no more “Mr. Star” (just a fabric star that plays music); no more thingie where you put the ball into the tunnel and it made music play. In their place, we put out other things, but those were toys that the J-man loved, and he looked for them for a long time afterward.

And now that some of them are back out (World of Learning and Mr. Star), he plays with them again. He’s SO happy to see them. He actually plays with them quite differently than he did back then. Huh… could it have been the kid’s developmental stage and not the toy?

And when I see his excitement over shaking Mr. Star to make him play for Little E, I get teary eyed… and I get angry. Oh yeah, the Mama Guilt from listening to “experts” will get you every time.

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What’s Your Autistic Toddler Like Now? (Part 3)

by Tim on March 2, 2009

And welcome finally to Part 3! This is the continuation of our series “What’s Your Autistic Toddler Like Now?”, a journey through what’s happening these days in the life of our autistic 3 1/2-year-old son and sequel to our very popular original article, “What’s Your Autistic Toddler Like?”. I meant to write this sooner, but illness has swept through the Flashlight household and rendered us all pretty useless this week.

If you haven’t already, go back and read Part 1 and Part 2.

I’m calling this group “Moderately Present” as these things are generally more common than not around here, but not as prevalent as the “Significantly Present” group from before. As with the previous posts, some of these are challenges for us and others are just things that are part of our day-to-day life. None of these are meant to be value judgments, just information about what one autistic toddler is like so you can perhaps see similarities in your own children or learn more about how these things are part of another family’s life.

I’ll be dividing this group into two parts. So we’ll finish this up in Part 4 soon.

Note: Wherever you see “DSM-IV” below, this means that attribute is part of the diagnostic criteria for autism spectrum disorders in the Diagnostic and Statistical Manual of Mental Disorders – Fourth Edition or DSM-IV. In medical terms, a specific combination of those DSM-IV criteria is what brings about a diagnosis of autism.

Same obvious disclaimer as before: We are not advising you on how to evaluate your child. Go get them evaluated by professionals with extensive experience with autism. Don’t just rely on some random people on the Internet – namely, people like us.

And here we go!

Characteristics That Are Moderately Present

Fixation or attachment to a particular object or parts of objects (DSM-IV; hard one to nail down for us) – For some, this manifests itself as obsessive-looking hoarding and organizing of objects. You might also see this as what seems like excessive fascination about a particular object (looking at a particular train for a long time or staring at a ceiling fan) or part of an object (a spinning wheel on a car).

The J-Man is all over the map on this one. It has gotten more noticeable over time, but I wouldn’t call anything he does here a major issue. The object(s)-of-the-day rotate regularly through an array of toys. For the longest time it was wooden blocks. Then it went to pieces of his farm animals puzzle, and then on to flash cards, and then wooden numbers, and then stuffed animals (which was cause for much rejoicing actually!), and then plastic food, and then randomly back through the order, occasionally mixing in some other things.

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What’s Your Autistic Toddler Like Now? (Part 2)

February 22, 2009

This is Part 2 of our series “What’s Your Autistic Toddler Like Now?”, a journey through what’s happening these days in the life of our autistic 3 1/2-year-old son and sequel to our very popular original article, “What’s Your Autistic Toddler Like?”. Note: Wherever you see “DSM-IV” below, this means that attribute is part of [...]

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What’s Your Autistic Toddler Like Now? (Part 1)

February 20, 2009

Many times over, our “What’s Your Autistic Toddler Like?” post is the most read article on this site. It’s also the post people most often cite as the reason why they write us and become regular readers of our blog. We are gratified by your response to our story about our son and hope all [...]

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