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Instead of answers, just more questions

Posted by on Aug. 23, 2012 at 3:01 PM
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Well, we still don't have any answers as to WHY Cailyn has hypotonia, but she's made a ton of progress. In another week, she will be 18 months old, which is when her pediatrician expected she might start walking. Instead, she's blown us all away and started walking at 16 months, and has now gotten SO good! There's still some falls and slips when she gets her body ahead of her feet, but she's really steady all things considered.

But, now we're concerned about her being on the autism spectrum. My brother, mother, and I all have Asperger's, so there's a strong family history, so I don't suppose it would be a surprise, really. I'm just seeing a lot of behaviors and tics like I saw in my little brother when he was this age. She's HYPER intelligent, and has really surprised us in her comprehension skills, as they are far beyond her age, but she doesn't talk. She can vocalize different vowel and consonant sounds, but can't really seem to put those together to form words. Prior to her first birthday, she could identify her "goggies"(doggies) by word, but now, she just looks confused when you say doggie, or walks to one of our dogs and pets them. She CAN say daddy, mommy, boobie, hi, bum, and damnit(oops!), but she just doesn't. Everyone keeps telling us she'll talk when she's ready, but I can't help but worry with such a strong family history of autism spectrum.

She's obsessive about our routine, and we have full on, inconsolable tantrums if it changes. Like, the other day, we were out of the house most of the day and didn't get home until her bed time, and didn't have time for her bath and teeth brushing, and she screamed herself to sleep because she was SO upset! And, we HAVE to read specific books at bedtime, and a specific number of times. (Daddy Loves Me 2 times and The Going to Bed Book 3 times) she likes spinning things and spinning herself.

And, yeah. I'm not sure how to proceed. We have her 18 month appt Sept 12, and I plan to bring it up then, but I almost wonder if it wouldn't be a good idea to email or call her prior to then to address our concerns. We also need to get in touch with the county about EI. I just don't know where to go, what to say, ya know?

Thanks for reading.
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by on Aug. 23, 2012 at 3:01 PM
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Replies (1-10):
andersonmommy2
by on Aug. 24, 2012 at 7:00 PM

 I know the feeling. We were told since last Dec my lil guy has HSP and now they think he may have dystonia or even a combo of both. I just want a firm answer has to what it really is.

newmommy-again
by Member on Aug. 25, 2012 at 12:03 PM
I would call the doc before you go so they will have the time to discuss the possible autism dx. I would wait for EI until after the appt, especially if you get the dx. My own opinion though.
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Steph_G.
by Member on Aug. 25, 2012 at 5:05 PM

Obviously I have no way of knowing if your child is austistic or not, but I just thought I'd let you know that hypotonia can make it harder for kids to talk as well. The tongue is just a giant muscle and without good muscle control she might be having trouble forming words. I'm pretty sure that it's standard that at 18 month and 2 year appointments they do austism screenings (that's what they did with my daughter) but it wouldn't hurt to call ahead and tell them that you want to talk about it so they are prepared.

ashleigheg
by Member on Aug. 25, 2012 at 6:18 PM
I know that low muscle tone can affect speech, but it's so much more than just her speech. I was not so much a late talker as I was an "all of a sudden" talker, so was DH, so was my little brother. It's just so hard to explain in writing without her right there so I can SHOW what I mean. And, a lot of it is intuition. I just KNOW something is off. I know that seems silly, but I've gotta trust my gut.
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Steph_G.
by Member on Aug. 26, 2012 at 9:55 AM

no i get that it's a gut feeling thing and I definately think if you are concerned then you should talk to your doctor about it, I just never put the hypotonia and trobule speaking together until someone told me, so I thought I would put it out there in case it wasn't something you had thought about also.

newmommy-again
by Member on Aug. 26, 2012 at 1:46 PM
Mommy gut is generally right, even if doctors don't believe us because they can't do a "test". Trust yourself and keep searching for the help/answers you need.
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ashleigheg
by Member on Aug. 26, 2012 at 2:10 PM
Thank you. I want my gut to be wrong for once, though. I had a gut feeling all throughout my pregnancy that I shouldn't deliver at the hospital, and I ignored it, and the hospital's errors are what caused her hypotonia. Now, I've got this super annoying, nagging gut feeling that she's austistic. I just want her to have a NORMAL life.

Quoting newmommy-again:

Mommy gut is generally right, even if doctors don't believe us because they can't do a "test". Trust yourself and keep searching for the help/answers you need.
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ashleigheg
by Member on Aug. 26, 2012 at 2:15 PM
Oh, and it doesn't help that I have family who are telling me I'm worried for nothing because she's "just a toddler", telling me her temper tantrums are normal, making me question my gut instinct. But, they go so far beyond just tantrums. They don't stop if you give in to what she wants, they keep going. I just, ugh. I hate that my little girl can't TELL ME what is wrong. I hate that I can't just FIX IT!!!!
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newmommy-again
by Member on Aug. 26, 2012 at 10:59 PM
She is NORMAL - just her normal. But what is truly normal anyway?


Quoting ashleigheg:

Thank you. I want my gut to be wrong for once, though. I had a gut feeling all throughout my pregnancy that I shouldn't deliver at the hospital, and I ignored it, and the hospital's errors are what caused her hypotonia. Now, I've got this super annoying, nagging gut feeling that she's austistic. I just want her to have a NORMAL life.



Quoting newmommy-again:

Mommy gut is generally right, even if doctors don't believe us because they can't do a "test". Trust yourself and keep searching for the help/answers you need.

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newmommy-again
by Member on Aug. 26, 2012 at 11:05 PM
I had the opposite. My son was fine but he didn't talk so my family insisted we get him speech therapy. Then he got sick and then really sick and then we got his rare dx and then we lost him. I still question and wonder if we didn't put him in therapy would he still be here? He would have still had his rare dx since it was genetic but did the extra exposure to others hasten the disease? It obviously is a question we will never have an answer for.

So anyway, my point is - she is your daughter, not theirs. You are raising her, not them. You chose what is best unless they want to take full responsibility for her (which they won't).


Quoting ashleigheg:

Oh, and it doesn't help that I have family who are telling me I'm worried for nothing because she's "just a toddler", telling me her temper tantrums are normal, making me question my gut instinct. But, they go so far beyond just tantrums. They don't stop if you give in to what she wants, they keep going. I just, ugh. I hate that my little girl can't TELL ME what is wrong. I hate that I can't just FIX IT!!!!

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