Delayed Toddler

heedy07

I have posted here a few times before.  Our 18 month old son has possible CHARGE syndrome.  With that, he has very little vision in one eye and decreased vision in the other eye.  His hearing has checked out as normal.

 His motor skills are good, and he doesn't seem to be delayed in either fine motor skills or gross motor skills; however, he just had a speech evaluation yesterday and tested at the 3-6 month old level  He has received EI services from 3 months old, but they have never recommended a speech consult.  It was actually our pediatrician who ordered it.  He babbles with various pitches/volumes, says about 3 words (mamama, baba, "ga" (go)), can follow a couple simple commands, and knows what "no" means.  He makes eye contact and is VERY affectionate. He does not point at anything to get our attention, does not shake his head no, wave bye-bye, play meaningfully with toys, or bring anything to our attention.  He prefers to wander around a room or climb on things.  His other favorite thing to do is to rub a book or paper across the bridge of his nose.  Obviously, this all points to autism and we are well aware of that, but it is also compounded, because some of his issues can also be due to sensory losses, which he definitely has.  

He is starting speech therapy 2x/week and we are starting the Baby Signing Times videos with him to try and give him a way to communicate.  Our pediatrician wants to put off formally evaluating for anything further until he is at least 2, because she wants to see what skills he can recover with the help of therapy.

My question to you all is, would you wait for more formal evaluations or would you want to have those done ASAP in order to get additional services lined up for him?  I honestly don't know what to do.  I knew he was delayed going into the speech/language evaluation, but my heart sank when she told me just how significantly delayed he really was  

kcisthebombdotcom

I would ask for a developmental pediatrician referral. It will likely take 6ish months (if not more) to get in, so you're seeing if therapy makes him progress some while getting the ball rolling on getting him formally evaluated. A win/win I think.

FWIW, your son sounds a lot like my daughter. At 18 months she had a few more words than your son but practically no ability to listen to directions. She did not play functionally with toys at all--she would walk around aimlessly putting everything in her mouth she could. She had good eye contact with me (though with no one else) and is super affectionate. She did not wave or point. She has made some gains in therapy. She's added some more words, follows instructions, and plays functionally with toys (though she does have a limited selection of preferred activities). She points on occasion and waves hi/bye along with the word consistently. 

We have her evaluation next month.

heedy07

I will go ahead and call our pedi to get the evaluation scheduled.  We have been through so much with him in the past year with genetics and multiples specialists, that she pretty much trusts my mama opinion on things.  To throw another kink in things, I forgot to mention that he also had a full blown seizure a week ago.  We are currently doing the full seizure workup (EEG and MRI), and should have the report from the EEG early next week.  

mightmom13

KC_13:

I would ask for a developmental pediatrician referral. It will likely take 6ish months (if not more) to get in, so you're seeing if therapy makes him progress some while getting the ball rolling on getting him formally evaluated. A win/win I think.

FWIW, your son sounds a lot like my daughter. At 18 months she had a few more words than your son but practically no ability to listen to directions. She did not play functionally with toys at all--she would walk around aimlessly putting everything in her mouth she could. She had good eye contact with me (though with no one else) and is super affectionate. She did not wave or point. She has made some gains in therapy. She's added some more words, follows instructions, and plays functionally with toys (though she does have a limited selection of preferred activities). She points on occasion and waves hi/bye along with the word consistently. 

We have her evaluation next month.

Just wanted to chime in because this sounds like my DD as well, but with gross motor, less eye contact, pre or delayed wave, other health issues and definatly a mouther.  I also have her eval soon - the pedi said even if all of this and her other things are just per delayed development (obviously some sensory issues though) it would be good to see a developmental pedi. Also to rule out or confirm any further spectrum from the MCHAT.

If you are feeling like I do somedays - you are not alone, it is scary,overwhelming at times but it is OK. Just wanted to reach out.