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.
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.
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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by Tim on 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 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.
If you haven’t already, go back and read Part 1. If you have, let’s continue on!
Characteristics That Are Significantly Present (continued)
Difficulty with social awareness (a bit better but a lot to work on) – I don’t know whether this has an official meaning, but I think of social awareness in a very broad sense as being aware that there are people around you and that they can be engaged with at some interpersonal level. For some time, we referred to other kids in the room as ‘part of the furniture’ as our son didn’t interact with them much differently than any other object in the room.
School has helped him in this regard in that he has regular time every school day with the same children and is involved in activities with them on an ongoing basis. You still get the sense that he’d usually be content without them, but often the emotions of an autistic toddler are inscrutable.
He does enjoy watching other kids do funny things, but watching rather than playing with children is one of those possible signs of autism, and this is a fairly accurate description of where he is right now.
That said, it is nice to see that he’s aware that other people have names, and he can use a name to refer to a person, though usually now that’s only with some prompting.
Continue on with Part 3! [click to continue…]
by Tim on 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 this has been helpful to you and your family.
In celebration of the 1st Anniversary of our blog, I decided to write a multi-part series, revisit that popular post, and update it for what the J-Man is doing now almost 9 months later. The original “What’s Your Autistic Toddler Like?” gave you a snapshot of what an autistic toddler might be like – or at least what ours was like – about three months before his 3rd birthday.
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by Tim on February 19, 2009
As a preamble to the upcoming sequel to “What’s Your Autistic Toddler Like?” (coming very soon!), I thought we should first go straight to the source in which the diagnoses are defined – the Diagnostic and Statistical Manual of Mental Disorders – Fourth Edition or DSM-IV. (Technically, it’s DSM-IV-TR, where TR stands for ‘text revision’, but whatever.) The people who evaluate your child don’t sit there with just this list and check off boxes, though. The diagnostic tests they do are far more nuanced, but they are in their own ways based on these criteria.
This is one place where those five-digit codes – known as ICD-9 codes – you might see on medical forms and reports (e.g., 123.45) come from. For the record, ‘Autistic Disorder’ is 299.00 and Asperger’s is 299.80, in case you were wondering.
[Standard Disclaimer - This is not some diagnose-it-yourself kit for you to use on your child. A formal diagnosis must be made by a qualified, experienced professional. This is just to give you some idea of what you are looking for. If you suspect your child may have autism, read our "Five Things You Can Do If You Think Your Child Has Autism" post, and especially note the M-CHAT questionnaire. Don't just say, "My kid only gets 5 out of 6 so there's nothing to be concerned about." It's important that you go over any questions and concerns with qualified people; don't just go 'by the book'.]
This is what that text says (below, or “Click to Continue” if you’re reading this as an excerpt). I will say one thing before plowing ahead – our children and their challenges are far more complex than what can be covered in a diagnostic manual. Think of this like a starting place where the road that follows is full of difficulties, surprises, challenges, unknowns, adventures, and joys.
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