Pedi brought up the "A" word

userdeleted

As in "autism." We had Leo's 18 month appt today. I feel like he's made big strides in communication lately, but he does only use 2 words correctly, in context. He also doesn't point, follow our pointing or glances, or reference our faces and reactions in response to something new or surprising. And of course there is his sensitivity to loud noises.

We do have someone that comes from ECI to work on his speech and development, and she has said that she sees no signs of autism in him. I have experience working with children who have autism and I don't see it either. I really think that he is just a late bloomer - plus he's always in a bad mood when we're at the doctor's office. 

Pedi wants us to have him evaluated by a neurologist just to be sure, and I guess I would like the confirmation that everything is fine. I just called though, and the next appointment isn't until September! Actually, it's on my birthday. I took it and also got on their cancellation list, but man, I hate waiting! 

Anyway, I don't really know what the point of this post is. I guess I was just surprised. Even after I said that the developmental specialist doesn't think it's an issue, pedi still said there were some concerns. Maybe I'm just in denial. I don't really want to talk about this to family or friends because they would just worry, thanks for letting me just get it out

KittyFX

Sorry , I'm sure it isn't easy hearing the A word. Sounds like you have your head on your shoulders about it. I know I have a friend who went through a similar scenario and it wasn't autism, just a little slower on developing speech. Good luck to you and sweet Leo.

katattack

That has to be hard and I can't believe you have to wait that long for an appointment!

No advice because I have very limited experience with this, but hugs to you! 

clynn58

That stinks that you have to wait that long for an appointment. Hopefully they can get him in soon and you can have an answer. (((Hugs)))

JayandJack

I don't have any advice but just wanted to throw you a hug.

 

 

rssnlvr

I'm so sorry, Rach. What a thing to have to worry about, and for so long. I'll keep you guys in my thoughts.

ali-1411

I don't see how a pedi who sees him once every few months for only a couple minutes could make that assumption.  He's probably just trying to cover himself by rec'd the neurologist, so it can never be said that he missed a diagnosis.  You and the ECI specialist would have a much better idea of Leo's capabilites.

fwiw - Layna is 18 months and she barely says words.  She has 3 words she says consistently....Ball, No and Bye.  She points, but for no reason and not at anything in particular.  And she cries every time the doorbell rings, the garage door closes if she's not expecting it, or if the tv suddenly gets loud.

mlf625

Oh, Rachel.    Nobody ever wants to hear that word, and I'm sorry it's causing you some stress!  FWIW, I totally agree with Ali on this: 

ali-1411:

I don't see how a pedi who sees him once every few months for only a couple minutes could make that assumption.  He's probably just trying to cover himself by rec'd the neurologist, so it can never be said that he missed a diagnosis.  You and the ECI specialist would have a much better idea of Leo's capabilites.

Big hugs!  I think Leo seems like a bright and sweet boy, and I hope you'll get in on a cancellation and put your mind at ease. 

misjenn

I can relate to not wanting anything to be "wrong" with your child. It's completely horrifying knowing that you don't have any control over it. I am so sorry that your pedi brought this up but it sounds like the specialist has a different view point. So that's good right :-) And it couldn't hurt to see the neurologist just to narrow any other possibilities out. GL Rach.

Abrooks

Hugs!!  That would be hard to hear...and hard to wait.  But it sounds like your pedi is trying to be proactive which is never bad.  And since you already have EI, you are definitely on the right track.  Try not to worry.  I know lots of kiddos that were late bloomers and just went about things on their own schedule.

Emer

Abrooks:

Hugs!!  That would be hard to hear...and hard to wait.  But it sounds like your pedi is trying to be proactive which is never bad.  And since you already have EI, you are definitely on the right track.  Try not to worry.  I know lots of kiddos that were late bloomers and just went about things on their own schedule.

This.  I'm sure it was hard to hear, but I agree that you are taking the right steps and I think it's really encouraging that a specialist that works with him regularly doesn't think Autism is likely.

Kim777

Ugh, I hate waiting so long for specialist appointments. It is so frustrating. It sounds really promising that your ECI person doesn't think it is anything to worry about. I hope everything turns out just fine!

mcurban

Emer:

Abrooks:

Hugs!!  That would be hard to hear...and hard to wait.  But it sounds like your pedi is trying to be proactive which is never bad.  And since you already have EI, you are definitely on the right track.  Try not to worry.  I know lots of kiddos that were late bloomers and just went about things on their own schedule.

This.  I'm sure it was hard to hear, but I agree that you are taking the right steps and I think it's really encouraging that a specialist that works with him regularly doesn't think Autism is likely.

and more of this.

 

FWIW- Jack didn't start talking until well after 18 mos. At 18 mos. he had two words, car and truck and Jon and I were pretty much the only ones who could tell he was saying them.  He didn't point or motion to anything. No "mamama" or "dadada." In fact, it has been so interesting to watch Tommy w/ his "normal" speech development compared to Jack. 

Now, a year later, Jack is running around the house w/ a cape on singing Davy Crocket at the top of his lungs. No one would ever guess that he was a late talker. 

 

userdeleted

Thank you, everyone. I really appreciate all of the support

Ali - I really think I'm leaning towards this. I spend all day with him, and the developmental specialist has been here for an hour or so once a week since January. I really think that if it was autism I would know.

I do think it's good to be proactive though, an eval can't hurt I suppose. I hope they have a cancellation soon, though maybe the long wait is a good thing. Probably by the time the appt rolls around we won't even need it anymore. 

Fa1ryG0dm0ther

I can imagine how hard that would be - especially the waiting part when it seems like you're stuck in the twilight zone of not knowing.  Are you going to see Dr. Karnik?  If so, he's absolutely amazing, and worth the wait!  You'll be in very good hand

Keep us posted. **No "A" dust**

 

userdeleted

Fa1ryG0dm0ther:

I can imagine how hard that would be - especially the waiting part when it seems like you're stuck in the twilight zone of not knowing.  Are you going to see Dr. Karnik?  If so, he's absolutely amazing, and worth the wait!  You'll be in very good hand

Keep us posted. **No "A" dust**

 

I think that it's the same practice, but it's Dr. Reardon. I hope that he's at least got a good bedside manner. When we had to take Leo to a pediatric neurosurgeon to check on his ginormous head the doctor was awful. She made it sound like it was our fault that he was delayed (oh well if you'd only clap more with him, maybe he'd be clapping by now!). It seems like sometimes specialists can be lacking in the bedside manner department. Hopefully this goes better

BoxerMomma

ditto rosie and abrooks. i hope yall are able to get some answers. 

Duckie07

Leo will be in my thoughts.  Hopefully you're able to see the neuro sooner rather than later, at least to put your mind at ease.  (((hugs)))

Deltadee

I'm sorry  I know that it's hard not to worry but please don't.  I understand your frustration with taking so long to get into the Neuro.  We had the same problem!  It took 6 months to get the appointment, only for him to do a physical of DD and then refer her to a Genetic physician!  

I hope you are right though and that he is just developing at a different pace...hugs! 

Fa1ryG0dm0ther

I don't know Dr. Reardon, but my mom probably does.  I'll ask her.  That practice is touted as the best in the state and one of the best in the country, so *hopefully* it will be worlds different than your last experience.

I wish there was some way to keep people from getting so callous that they forget how to interact with other humans!  I know you're a great mom, and I know that words like that stick in your head and can torment you.  (The words only stick BECAUSE you're a great mom and you want to do everything you can for your kids.)  Some neurosurgeon who sees Leo for 15 minutes may not know why he's a little slower than others to clap, but she knows it isn't her fault....so she's reaching.  She wanted an answer, too, but that's not the only one.  It's unfortunate that she actually said that one out loud.  It's also unfortunate that she doesn't get the opportunity to see you play with your kiddos on a daily basis so that she doesn't stick her foot in her mouth. 

I'll page you if I find anything out about Dr. R tonight.  Leo is perfect just the way he is, and you're doing a great job taking care of him and being aware.  A screening may make you feel better to rule it out for now.  I'm a little surprised that your pedi said the "a" word already, because many won't even discuss that diagnosis until age 3.  (I'm not saying that it can't be determined earlier, but no one wants to give that diagnosis unless it's absolute.  They do the same thing with asthma. )

Regardless - I hope you get in to see Dr. R sooner than later, and I hope that Leo makes big progress that makes this all seem silly when looking back in retrospect in a couple of months. Hugs!

carlinlp

You've already gotten some great advice but I wanted to throw in an extra hug.  That seems like an awful long time to wait for some answers, I hope something pops up sooner!!

ndluvsrk

Abrooks:

Hugs!!  That would be hard to hear...and hard to wait.  But it sounds like your pedi is trying to be proactive which is never bad.  And since you already have EI, you are definitely on the right track.  Try not to worry.  I know lots of kiddos that were late bloomers and just went about things on their own schedule.

I ditto this too. Your pedi is probably just being cautious in case there is a possibility. But it really sucks that you have to wait that long!

I really hope you get in sooner on a cancellation just to put your mind at ease.

(((Hugs)))

kiarox2002

carlinlp:

You've already gotten some great advice but I wanted to throw in an extra hug.  That seems like an awful long time to wait for some answers, I hope something pops up sooner!!

This.  Big hugs.  We only had to wait a month and a half for our neurology appointment and it seemed like an eternity.

CollieJade

Awww, that must have been tough to hear.  I'm sorry you're having to worry about it!  I agree that you sound like you're going about finding answers with a good head on your shoulders and I think you know what's best.   GL with everything and I hope you don't have to wait long for that appointment. HUGS!!