Help! Get Second Opinion, or Just Chill?

Updated on February 06, 2016
A.E. asks from DHS, VA
9 answers

I have a beautiful (almost 3... birthday is in April) little girl. She is the light of our lives, and a constant source of entertainment. She was late on almost all of her milestones.. though we found out at 15 months that she had severe blockage in both ears and a month later, after getting tubes she finally started to walk, talk, and eat like a normal child. She has always loved people... but has always been a bit guarded too. We thought nothing of the late milestones because she made eye contact, and over all was very even tempered, a great sleeper since day one, and did well at day care. After the tubes though she started progresses enormously certain things still persisted that are still happening to this day, enough to cause me to watch her. She arm flaps when excited, she hums a very long, mono toned hum every time she eats or concentrates... she can be pretty repetitive in her play and sometimes even in her words, her eyes contact is pretty good, though there are times you cannot get her to look at you for anything, and then the two weird things... she cannot drink out of a straw.. simply cannot figure it out. She can blow on stuff.. like instruments and bubbles, but can't seem to understand sucking in on a straw, and she also cannot figure out how to drink out of a cup.. when the liquid gets close to her she sticks her tongue in it.. but won't tilt it back far enough to let it pour in her mouth. Other then those things though.. she is very well behaved... so polite, always saying please and thank you to everyone, communicates her needs, always wants to be the center of attention, loves to talk to people.. like seriously waves hi and talks to everyone.. if we have company even if she has never met them she is grabbing there hand and pulling them into her play room to play saying "come with me and play", she is in regular daycare 5 days a week in the pre school class and does great, loves most food and eats all kinds of it, never stops talking and can speak in full sentences, still a great sleeper, and has no issues with schedule changes.. we can go on vacation and things be thrown totally out of whack and it doesn't bother her a bit. Most importantly this girl loves to play with us.. and her 6 year old cousin kaleb.. mimicking everything he does and we do, always in our laps, or giving us kisses, and other then a few short lived temper tantrums that I think most toddlers get (a few a day when she doesn't get her way that might last 30 minutes at the most) She is just an absolute sweet heart. All of that being said because of the bad stuff.. the stemming and what not, I took her to her doctor whose clinic actually specializes in this kind of stuff and he sat with her for an hour and half... I had to fill out about 10 pages of paper work while he played with her and asked me tons of questions, and at the end he told me that there were 3 tests they do.. the first one was the ones he did on that visit.. if the scored low they moved to the next once which was some kind of test and I cannot remember the name of it, and if still concerned they have you take them to the place that does the actual full blown evaluation and diagnosing. He said she didn't even come close to having to move on to the second level testing, that other then the stimming and the fact that she seemed very hyper active.. that since she didn't show major or even medium signs of issues in Speech (she was actually ahead there) or communication that there is no way it could be autism and he felt instead it was more of just a Sensory Issue. She has also done an evaluation at a therapy place with a speech, physical, and occupational therapist and didn't qualify for any of those, though they did all say they understood the confusion with her bc there was something there.. something different even if not major, I still, when standing in her preschool class can see the obvious difference in her and her classmates of the same age. I am not trying to play the compare game, but I am realistic parent, and though she is wonderful and I wouldn't change one thing about her.. I want to make sure by accepting her doctors words that I am not possibly putting her in a bad position for her future by not getting another evaluation, or do I take their words and relax and let it be?

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So What Happened?

I agree with all of you, I guess my two issues is making sure she gets any help that she might need, but also my husband and I are wanting a second child...she is already almost 3. We have been waiting though to see what is going on with her. If she does wind up having Autism then there is a good chance that things might change in the future as Veronica said, and I am not sure I want a second child as I would be able to put all of my attention on her... not to mention when one child has it we all know that you second is that much more likely to.. and.. I keep saying to myself "what if we have another child with it, and that child winds up being severely affected..." I would just like to know what is happening with her and know what we are dealing with so to speak before we have another. We have made a joint decision to wait at least another year, she will be close to four and maybe by then we will know something.

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M.D.

answers from Pittsburgh on

Normally I recommend calling Early Intervention if the mom instinct says something is off. However, it sounds like you've already had her evaluated twice, and both times everything came up fine. So, I'm going to say relax and give it time.

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T.D.

answers from Springfield on

go with your gut. get a second opinion. its not going to hurt her to be evaluated again. and if the second opinion reveals something then you have done right by our child.

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D..

answers from Miami on

A., it sounds like you've got some good people working with you. I recommend highly that you get a speech therapist to work with her even if her speech isn't an actual issue. Not being able to suck on a straw can have to do with weak oral musculature, and the speech therapist can help her with this. She will also work with your daughter on receptive language, which isn't the same thing as speech, per se.

About the sensory - my son had an evaluation, and the woman said he didn't "qualify". His speech therapist asked her to work with my son a few sessions because "something wasn't right". The OT worked with him and it was amazing what he could not do that she didn't pick up on in the eval. She apologized to me and worked with him. It made such a difference. Make sure you get her occupational therapy with someone who specializes in SI - that is SO important. It will make a big difference in your daughter now AND in the coming years. I did that (along with speech) for my son and it was a godsend.

There's too much worry and then there's paying attention to that gnawing feeling in your gut. I really think that you should invest in some OT with someone who specializes in sensory integration. It makes such a difference.

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M.G.

answers from Portland on

I'm a mom who's child was misdiagnosed with Autism for the very reason you mention - he needed tubes. We went in to have his hearing tested, and some well meaning but completely misguided individual sent us off on a path that resulted in him being hastily assessed and then diagnosed with Autism. Thanks to our wonderful doctor, we were able to get him into ENT when it just wasn't making sense. I had a wonderful Autism support group and through talking to them, I realized something wasn't quite right.

My son's speech and walking came almost immediately. My chubby toddler thinned out because he could finally walk with balance, and he became curious, started exploring and branching out. He was a new child. It takes a while. They lost out on all that learning when they couldn't hear.

It took until about school for him to be fully caught up. He has done well in school. He still has trouble with hearing but now we can use decongestants if he gets a cold.

He didn't have the problem with the straw you mention but I have a relative who never lost the tongue thrust reflex I think it is. They still stick their tongue out in the glass if they are drinking. They also let their tongue sit between their teeth when their mouth is closed. It sometimes happens. Usually kids outgrow it.

I would trust your doctors. In our case, it was a psychologist with her own private clinic who misdiagnosed my son. Because Autism Disorder is on a spectrum, she later said he was on the high functioning end. We had him fully assessed by the Autism team (doctors as well as psychologists) later on and he showed no signs. He had some atypical behaviors he'd picked up since being hearing impaired, but he has outgrown these.

Good luck and keep us posted :) I hope that helps ease your concerns.

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P.K.

answers from New York on

Relax, breathe and enjoy your girl!

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S.R.

answers from Los Angeles on

I would chill on it for another year or 2. She is physically healthy and sounds very happy so it is no detriment to her at this point if your concerns go "unidentified" for another couple years (or ever, IMO). You've already determined that she doesn't qualify for any of the typical interventions anyway. It would be different if it seemed like her Quality of Life was lacking (or yours as her parent), then I could see why you might be anxious not to overlook interventions to improve that. But it sounds like she is doing well, and the little things that concern you (stimming, not liking straws/cups) don't compromise family life at all.

Enjoy her preschool years, she sounds wonderful, little quirks and all. When she gets to kindergarten you'll have another venue in which to observe her, there will be some more professional educators involved, and you can always revisit your concerns then (if you even still have any).

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B.C.

answers from Norfolk on

Just enjoy her and stop worrying.
There's a wide range for what passes for normal and she sounds normal to me.
Your child is unique - every child is - and you ARE comparing her - please try your best to quit it.

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N.B.

answers from Oklahoma City on

She's so young that sometimes she's hit her milestones, sort of. SO they don't want to label her too much.

Please consider putting her in Pre-school this fall, enrollment might already be going on. Such as Head Start if your income meets their guidelines. If not there are private schools or private facilities that offer it.

A professional teacher spends hundreds of hours each year with kids. She/he knows what is abnormal. They can spot differences and let you know what they see. They can even have a pretty good idea about what they're seeing but of course they aren't psychologists that are licensed to make an official diagnosis.

IF IF IF your little one is behind or even ahead in lots of areas but behind/off somewhere else then they'll need another evaluation.

Make sure next year at this time that you're enrolling her in a regular elementary school pre-K program. All day one if possible. They need to observe her all day so they can see her when she's fully awake, hungry, tired after lunch and recess, happy, sad, mad, etc...in the school system they'll have a team of psychologists that do weeks of observations and make recommendations to parents to have evaluations done.

She might grow out of these behaviors and she might have a disability. Time will tell because as she ages her work in school will grow and either she'll be able to do it or she won't.

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R.K.

answers from Boston on

Your daughter sounds delightful. She is making significant progress since she had tubes placed. And yet, you have observed some specific behaviors that are not typical. I encourage you to sign her up for an evaluation by your local school system's special education department. All school systems must offer free screenings. Some start at 2.9 and some at 3.0. Either way, sign her up now. Ask for a screening that includes a speech/language pathologist and sensory specialist. The screenings allow you to talk with professionals about your concerns and get feedback. Even is services are not offered, often helpful tips are given. Also, this would provide the system with a baseline of your daughter's skills. And so, if in a year you continue to have concerns, you may request a second screening and conversation.

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