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Children - Special Needs Community
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Avatar universal

"Just behind" or special needs?

Hi everyone,

I have a 16 month old girl who is not yet walking.  She is cruising and standing a tiny bit on her own.

Additionally, she is not speaking and only has a few sounds ("ma" "bah" and sometimes "nah").  She occasionally will point but not when she wants something...she seems to do it at random, probably because we like it.  She can tell when you ask a question "Where's Mama?" but then will point in a random direction.

Finally, she is very social - has no trouble giving hugs, eye contact, etc.

We've had the following checks:

Auditory - normal
Speech & Developmental - delayed except for social skills (~70th percentile?)
Physical Development - delayed ~75th percentile
Chromosomal tests & metabolic tests - normal

She is currently in developmental and physical therapy.

She's on track to see a neurologist and an autism expert (3 month wait - argh!).  I highly doubt she has autism...she's lacking many key symptoms but her doctor wants her checked anyway.  Only minor birth complications (excess fluid) but when she was born she checked out ok so most doctors don't seem concerned with that.

One thing I've never been able to get from the doctors - they say she is definitely behind but there's always the chance she's still "normal".  At some point though, we probably should give up hope on that.  My question is: when is that point?  When would you say there is no real chance of a child "catching up"?  Can a kid have these kinds of persistent developmental delays and still turn out "normal"?  If so, does anyone know of any research that indicates what the chances are, etc.?

Thanks so much!
3 Responses
Avatar universal
You said your daughter does not have autism (however I do). It seems that her disabilities are physically related (unlike me I can walk).

Ok, you said you have put her into physical therapy. I think there is something else out there called speech therapy, I think that is for people who cannot talk or if they try to talk and it is hard I think they can learn to talk better.
Avatar universal
Autism is a disorder of neural development characterized by impaired social interaction and communication, and by restricted and repetitive behavior. These signs all begin before a child is three years old.
1227139 tn?1462338230
Hello Jv21,

First I would like to say welcome to the group!  I am sorry I haven't gotten to you in a speedy manner, I have been away in the hospital.  

I would like to help you with your questions.  I noticed a few things that I have questions about.  You mention that your daughter has had chromosomal testing, can you tell me which ones?  The unfortunate part to genetics testing is that it is very specific in that if you do not know what to test for, you can't test for it if it's outside the common tests.  So, I was wondering what they tested her for.  And it is important to note that there are hundeds of thousands of chromosomal abnormalities, let alone ones that have not been discovered or ones that do not have definitive testing for.  So this can be very tricky.

You mentioned excessive fluid.  Can you tell me if you are referring to her brain, her renal system her lungs.... There are many areas where excessive fluids are a marker for certain genetics or chromosomal abnormalities.

Something I would just mention to you, (as a helping hand and not to be offensive) you used the term "normal" which I see you placed in quotes.  Since in this forum you will find that parents may have a hard time with the terminology because it has haunted them (like yourself) since their child was born, I invite you to use the term "typical".  This term is less likely to offend, and is often helpful when using the terminology that often parents of this community try so hard to avoid - as a label.  (Hope that helps!)  :)

In answer to that question of the possibility that your daughter might catch up, if at all - yes there is always that possibility.  Depending on the reason for the delays, which may be developmental, (physical or cognitive) with therapies milestones may be met just on a different time line.  The concern I think you have is will she continue to have delays or will she remain at a level of delay.  I think that is largely the question that every parent who has a child with needs, (whether diagnosed or not) asks.  I have just stared a "Play to Learn" parent/child group for all children with special needs (with or with diagnosis) and their families.  The goal is to help provide support with services for all situations.  And I wish that you were close by because I think you would certainly benefit as would your daughter.  I bring in Provincial services and speakers to help provide assistance, guidance and solutions for problems that otherwise families may not be able to obtain or be pointed in the right direction for the same.  Since your profile doesn't say where you are from and that you are male (though I presume you are the mother - but I am sorry if I am mistaken and you are the father.) I can't even advise you of the possible services in your area.

I am hoping that you do get a chance to see this comment that I am posting.  If you are able, I would suggest that you send me a direct message - I am often jumping from forum to forum since I lead three, and I find that when people send me direct messages I can get to them faster, and much more privately.  I am available at any time, but I can provide you with other ways to contact me if you are interested.  I am sure I can give you a lot of other useful information as you are looking for, but it is definitely hard to do in one comment follow up post.

Again, I am so sorry I am only responding now to your question, I know you have been waiting a long time for a response.

In addition to anything I have mentioned, please keep in mind, that while I or others may have extensive knowledge in many areas, you should always seek professional medical advice from your own physician, as it pertains to medical conditions or concerns.

Good luck, and if you have any other questions that I can help you with, please feel free to message me directly.

Sincerely,
Sandi (Dragon1973)
MedHelp Genetics Community Leader;
Children - Special Needs Community Leader;
Down syndrome Community Leader & Ds Group Forum Founder/Moderator
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