starting over with DS
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| Mon, 01-23-2006 - 12:02pm |
So you guys know that DD Sylvia (4 y.o., PDD-NOS) is in a spec ed class receiving ST, PT, and OT... This morning I had an EI evaluation for DS Sebastian (2 y.o.). They think he'll qualify for ST. It's very strange: socially and behaviorally, he seems to have no issues at all. He's totally opposite from Sylvie -- very easygoing, eager to please, loves to interact with others, has no anxiety about being in new places or doing new things, etc. But in terms of his speech, he shows so many similarities to the way Sylvia was at that age. He has a huge vocabulary and knows a bunch of 2-3 word phrases that we've taught him, but he isn't putting phrases/sentences together on his own. He can follow directions, but when it comes to more complex or abstract ideas his comprehension seems limited. He does a lot of repeating, but he seems to use language more for labeling than for communicating. So... the evaluators agreed with me and think he would benefit from ST. They said that children this age can sometimes show PDD-like speech delays, but not have any other symptoms of PDD. I was just curious: did any of your kids start out this way? With Sylvie, it was the social and behavioral issues that were the big red flag for us, and that's what made us notice her language delays, really. But with Sebastian it's totally the opposite... Socially and behaviorally he seems so much like the other kids his age, but his language use seems to be a real red flag for us. Also, he shows a lot of "quirks": by his 2nd birthday he had taught himself his numbers, letters, shapes, and colors. And at this point -- he's not even 2.5 y.o. -- he can listen to any piece of music (classical, rock, whatever) and name the instruments that are being played: "Piano! Bass! Violin!" All of these things are really cool, but they also worry DH and I since they seem so similar to Sylvie's quirks.
The evaluators told me this morning that Sebastian "will catch up, no problem," once he starts receiving services -- and this is NOT what they said when they evaluated Sylvie (it's the same evaluating team). But I still feel like we're going to be watching him very closely for a very long time. Does this pattern (language delays without behavioral and social delays) sound familiar to anyone? I know nothing can be accomplished by my worrying, and since he's hopefully going to be starting services soon there isn't much else I can do at this point other than watch him... I guess I was just curious what the rest of you thought...
Jennifer

I don't know that I "know" anything since we're new the dx world, but I'll tell you my family's experience. I have four children.
11yo dd -- NLD (similar to AS)
9yo ds -- NT (probably ADHD)
7yo ds -- NLD
2yo dd -- NT
11yo did everything by the book. She rolled over when the baby books said, she walked (12mos), talked, etc., all when the book said. She was a little "smarter" than other kids her age, counting, knowing letters, etc. The only thing different I ever noticed was that she tended to lose her balance a thousand times a day, constantly tripping and falling over nothing. Her potty training was also on track except for her bowels. She's had a lifetime problem with an inability to move her bowels. She began reading as a preschooler, almost teaching herself. However, in kindergarten, while she was reading circles around the other kids, she was always bringing home cutting/pasting homework that all the other kids had finished easily because her motor skills were delayed. I also started noticing more social awkwardness tho' since she was shy, I didn't see more of it immediately. Her handwriting to this day is awful. She is NLD (AS).
9yo ds was an early walker (9mos), and he spoke a couple of words about that time, including "da da." He quit speaking, however, and never said another word for over a year. When he did, it was "ba ba" for dad, instead of "da da" as before. At 2yr he began ST. He stayed in ST for a long time because his expressive and receptive abilities were so disparate. He was clingy until about age 2yo when he became a social butterfly. He has struggled academically and was held back in kindergarten (doing better now). He is athletically gifted and well coordinated. He is NT (maybe ADHD).
7yo ds was delayed in walking (17mos) and speech. He didn't seem to be bothered by his lack of either ability, tho. He did get frustrated easily by being unable to get up/down the stairs on his own at 2yo. He'd stand at one end and shriek until we helped him. After watching his older siblings, he was very eager to begin potty training, but he couldn't figure out how for a long time (4+yo). He had no sensory awareness of his bodily functions. He'd stand at the toilet and squeeze himself hoping that would do it and was frustrated it didn't work. He falls a lot for no apparent reason. He can't ride a bike, but he has nice handwriting (when he focuses). He is NLD.
2yo dd was an early talker (very expressive and very extensive language skills) but only slightly early walker. She seems really smart (counting, ABCs, remembering something she heard once a long time ago, etc) like her NLD siblings but has great balance and athletic inclination liker her NT brother. We have absolutely no idea what to expect from her because she has traits similar to each sibling but clearly can't be both NLD (AS) and NT!
I guess I'm trying to say that from my kids' experience, even my kids who ended up with similar challenges didn't necessarily start with similar symptoms.
I'll never forget the look on DH's face when I told him I had scheduled an evaluation for DD: He was stunned! "WHY? She's fine. Compared to Peter, she's better than fine"
...and there it was right there. Compared to Peter at the same age, she was light years ahead. Calm, interactive (with adults) no crazy behaviours. She had a lot more words too, and her language was way more functional than his had ever been. She didn't sleep through the night, but we figured that was a 'phase' (which lasted 3½ years!)
...but compared to NT's of the same age, she was speech delayed, not terribly interactive and just ....something. You couldn't put your finger on it, but the therapists who spent time with her alone, or who saw her in a classroom setting for five minutes all saw it too.
We have never given the 'something' a name. The best we have managed (and she will be 6 in May) is "at risk for Asperger's Syndrome" Actually, I *now* think she might be the same as me: ADD -no H, but we shall see in the next eval.
We got her TONS of help. She had OT, (graduated pre-K) Speech, a SpEd teacher to work with her in regular preschool, and now (K) she is mainstreamed with an aide, a SpEd consultant teacher 45 minutes each day and ST twice each week. She has made TREMENDOUS strides in the past few years, and it is because we got so much intensive and early help for her. I was a lot more clued in the second time around...
Bottom line: If you're in doubt: check it out. The earlier therapy starts, the better, and just because he is not the same as his sister does not mean he does not have issues, and even if they are less intense than hers, they are no less important (I made that mistake for a little while. Please learn from my mistake).
GL and HTH
-Paula
visit my blog at www.onesickmother.com
jen,
that's pretty much the way it is with my two little guys. matty, age 3.5, has significant delays and is diagnosed with ASD with delays across the board. austin, now 2.5, had speech delay with a hint of repetitive behaviors--which we weren't sure if they were in imitation of big brother or not. almost a year later, austin is doing awesome and catching up quickly. all agree that he won't have diagnosis for long, especially dr. hyman (our local dev. ped).
valerie
Thanks for the responses. Paula, I think we fell into the same line of thinking: compared to Sylvia, Sebastian just seemed as typical as they come. So it took us a while to realize that he might need some help -- although on the positive side, Sebastian is not even 2.5 and has been evaluated, whereas we didn't get Sylvia evaluated until she was 3.5, so I guess our experience with her did teach us to seek help early. Valerie, we also question whether some of Sebastian's quirks stem from his imitating his sister, or whether they're innate. It's really hard to tell. It's also going to be tough to sort it out, because Sylvia and Sebastian tend to communicate in their own, quirky way... They sit across the dinner table from one another making up words/chants and echoing them to each other: "Monkey jungle whoa whoa whoa! Daddy Mommy whoa whoa whoa!" It can go on for quite a while. Sometimes Sylvia will just shout out numbers at Sebastian: "1-2-3-4-5-6-7-8-8-10!" and Sebastian will shout them back. So even if his habits are imitative, they're going to be tough to get rid of, because that's really how they talk to each other. Hopefully as both of their language skills improve, their communication with each other will get more interactive, rather than just repetitive.
The EI evaluators told me that they're only recommending ST for Sebastian for now, but that we should keep an eye on his motor skills and, as they put it, the "rigidity" of his learning, and in 6 months they can reevaluate if necessary...
Thanks again,
Jennifer