Worried about baby sister, can't stop!
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| Sun, 05-15-2005 - 3:55pm |
My 4.5 y.o mild PDD-NOS had issues right from the start. He was a 33 week preemie, which caused much confusion. The first problems he presented with was hypotonia and gross motor delays. He has rocked himself to sleep since he was an infant. Then speech became an issue at 18 months, when his only word was "dog," repeated all the time. He did point at stuff, but we had to show him how. Then of course the other issues became obvious, the echoing, limited pretend and all that. He also toe-walks.
Now we have his baby sister, just turned 18 months, born at 36 weeks. Overall she is miles ahead of where he was at 18 months. There is no hypotonia. She has about 15 words, though it is all labeling things. When she wants something, she reaches or points, and whines or says "mama." She plays peek a boo, claps, waves and says "hi" to everbody she meets. She can point to several body parts on herself and name them. She does this when I ask her "where is your nose?" so obviously she understands my question. She can stack 3 blocks, and can do the circle on the shape sorter. She seems to 'get' things faster than her brother did. I only have to show her once or twice and that is it. She gives her dolly a bottle. My dad told me she once offered a sip of her drink to his yard ornament that looks like a rabbit.
So what am I worried about? She doesn't follow simple commands. She understands "no" and "sit down." But if I ask her to bring me something she doesn't. And, she toe walks. She also occasionally walks up and down next to the paneling on the wall, feeling it with her hand. She also sometimes (not every day) spins herself in a circle.
Her check up is Tuesday and of course I will talk to the dr. Am I nuts for worrying about the few odd things she does, when everything else is so normal?
Amanda

Hi Amanda,
You and I are similar -- I have a 3.10 year old DS who has PDD-NOS. I also have an almost 16-mos old DD (I have a typical almost 7 year old DD too). I have to keep myself from going nutty with worry about the baby. But I have had a typical child before, so I know it can happen.
Your DD sounds like a very typical toddler to me (as is mine, I think). Honestly, I'd concentrate more on the things she DOES do (pretend play, understanding commands, labeling things, interactive games like Peek-a-boo, calling you Mama, etc.) than the toe walkiing. Toe walking, in and of itself isn't unusual in little kids. Neither is spinning in a circle every once in a while. I KNOW it's hard to relax, but you just keep looking at the bigger picture.
It's very easy to get caught up in the "Mom of a ASD Kid" kind of thing. Once, w/o thinking I said "Stop that!" to my oldest DD. She just looked at me and said "I'm not Jack." I was like "Oh, right. Go ahead then." Even typical kids do some odd things every once in a while.
Take care,
Cathy
Hi Amanda,
I can relate to your concerns. DS Robbie is almost 5, PDD-NOS. DD Claire just turned 2. We can recognize how much more up to speed Claire is socially and that sort of thing. But we were scared because she really didn't say many words at all until the last couple of months. We had her evaluated through our county's Infants and Toddlers program, and we were relieved to know that the only thing she is behind on is her expressive speech. I think a year or so of speech therapy will be a big help, and we're already seeing a difference.
But it's so easy to recognize the odd behaviors. Claire toe-walks, but only sometimes. I think she likes how it feels. I wish I could just see that and think "oh, what a little ballerina", but of course it makes me pause instead. She likes to spin around while I sing the Wonder Woman theme song. I'm not worried because she only does it sometimes, and it's more for fun. Plus, she gets dizzy and Robbie never did because of his sensory needs. I've noticed Claire checking out neat textures (our fireplace screen, the rough wallpaper at church, etc), but I think she's just exploring.
So, I can understand how quickly we tend to worry about things that other parents would take for granted. Been there. In fact, I took things for granted when Robbie was younger that I can now see were red flags. I hope your doctor is able to give you some reassurance. Let us know how it goes!
Maribeth
Amanda,
I feel like you are my other self!! I, too have a 41/2 yo old with AS/HFA, and now I over analize our 20 mo son. He is slow to speak and I am looking for speech therapy and everyone is thinking that I'm nuts! Our daughter, however, did not have any speech issues-at 1 yo she said more than 20 (big) words. Zach doesn't have many "complete" words. I do understand him most of the time, but his Dad can't even understand him.
I don't know if it's worst to feel relieved that she's "not as bad" as your son, or be hypersensitive. It's also difficult to take advice from outsiders who don't have a special child. Follow your heart and your instincts, just like you have probably done with your son!
Julie
I have BTDT, as has my SIL (who has a classically autistic son and a younger NT son) and everyone else I know who has a child on the spectrum. Yes it is natural to be concerned. Yes autism can run in families (I have 3 on the mild end of the spectrum myself) but it doesn't always.
My advice, take her to EI and get an eval even if just to ease your mind. My NT nephew toe walked and a few other behaviors that concerned his mom when he was little. He just turned 5 and is very NT. She had him assessed at 1 1/2 or 2 to be sure and everything was fine.
Conversely, My dave is 5, ADHD and Mild PDD-NOS. When he was 2 we took him to be evaled to make sure. At that age they couldn't tell me a definitive diagnosis other than sensory integration disorder, but they were able to say he wasn't neurologically typical and that most likely was heading down the ADHD path. He still now doesn't have a clear diagnosis but we were able to get him early help which has been definitely worth it. He didn't qualify for EI, but began recieving speech at 3. However, with knowledge of his needs and learning profile there was alot we could do at home from the beginning.
Renee
Well, I know today was the appt for your DD, but I wanted to echo Renee's advice about getting an EI eval for peace of mind.