Hi Renee,
My first thought is that since you said that Harley was only recently diagnosed with ACC a few months ago do you know about Early Intervention?
I'm not sure where you live but in the United States Early Intervention therapy services is provided to babies/kids from birth to 3 usually at no cost. It may not always be called Early Intervention from each state to state. Some states operate the same program but under a different name.
Has your child's pediatrician or other doctors/specialists told you about the Early Intervention program or began the enrollment process for Harley? He will qualify for services (which include physical therapy, occupational therapy, speech therapy and other services) on his diagnosis of ACC.
Early Intervention will do an assessment on your child and determine what type of help and therapies he needs and then a therapist will usually come right to your home to provide therapy services typically once a week for free. This would be a great way to receive speech therapy services to help promote speech for Harley and help you as well with ideas of how to work with him.
My second thought is that since you mention you aren't sure if Harley may have a hearing problem...has Harley been seen by any specialists to rule out other medical conditions that can sometimes be seen when a child is diagnosed with ACC?
Has Harley had an elaborate hearing test performed or been seen by a pediatric ear, nose and throat doctor?
Some kids who have ACC do have hearing issues. Some kids who have ACC have auditory and/or sensory processing issues. They may hear well but just are not able to easily process what they are hearing.
Has Harley been seen by a pediatric opthalmologist? It is very important that a child who has ACC be seen by a very good pediatric eye doctor who is highly recommended. The optic nerves and other eye issues should be ruled out.
Here is a website that tells more information about specific specialists and tests that are typically performed after a baby/child is diagnosed with ACC or a corpus callosum disorder:
scenicbeauty.tripod.com/WhatComesNext.htmlMany parents who have a child with ACC say that their child has taken longer to learn something and that even when they are teaching them something...it appears that they aren't paying attention or understanding but then one day...it just clicks for the child and they learn it. It may take months or a year or more but don't ever give up on teaching Harley because more than likely, like most kids who have ACC, he will be on his own timetable for when he will do and learn things. He will amaze and surprise you. With time and patience, you will adjust to the ways he learns and be more comfortable with how to help him learn.
It also helps so much to have the support and encouragement of other parents who have a child with ACC. The ACC Listserv (that I mentioned to you in my private message) is a wonderful avenue to connect with A LOT of other parents who are able to understand your feelings, concerns and can help give advice, suggestions, or just validate your feelings.
ACC Listserv e-mail support group:
lists.maine.edu/cgi/wa?SUBED1=acc-l&A=1 It's wonderful that Harley has an older brother. The things that he will learn from watching his older brother and interacting with him are so helpful for Harley's process of learning new things and his development.
As for his understanding and following directions...it may just take him longer. Sometimes a child with ACC needs to hear the words several times, needs encouragement, needs modeling to help them understand what you are saying to them and asking of them.
The child who has ACC may need the words to be very simple and repetitive to help them learn and may need the same, exact words to be repeated several times to learn something.
The child who has ACC may need to hear the same word or phrase said each time until it connects for them and they are finally able to understand it.
Trying to get Harley to come to you will take patience and probably some work to help him put it all together, to learn and process what your words mean and then to make the connection and do what you are actually asking him to do.
I remember it took my child, Matthew, a long time to be able to follow very simple directions. He was much older than Harley before he began to follow very simple one-part directions.
Not only will Harley need to know the words you are saying but he will need to learn what the word(s) mean and connect the word to an object to help him understand language and to then be able to put together what you are asking him to do.
You may need to put something in your hand that he really likes (bottle, toy, etc) to get his attention, then say "get your bottle" or whatever phrase/words you feel are right for him. Then wait and say the words again. It may take A LOT of encouraging, patience and repetition for him to finally understand what you want him to do. It definitely helps when a child is highly motivated by something to help the learning process along more easily.
Of course, there will also be those typical baby/toddler times when they just don't want to do what you want them to do and they would rather do their own thing. Determining that is sometimes more difficult when you have a child with ACC...but you are his mama and you know him best so just trust your gut feelings and know that in his own time, and in his own ways...he will learn and continue to make progress with your help, encouragement, patience and through therapies and guidance from specialists who work with you and him to promote his development.
Sandie *Mom to 16 year old Matthew with ACC in Oregon*
P.S. I sent you another Private Message (PM).
My son is 15 months old with C-ACC. He can say 2 words...dada and buba. I think I have heard him say mama, but that could just be my wishful thinking.
It seems to me as if he is stuck in the stage where everything is dada. If he wants something its dada. If he is asked a question its dada.
He does babble and make noises, but my concern is how much of what we say does he understand? I make request like, "Harley come to mama please," and he looks up at me and even turns in my direction, but he doesnt attempt to crawl anywhere near me. He usually just turns around and starts doing whatever it was he was doing. I have no idea what to make of this. His older brother was so completely different. At 15 months he probably knew at least 10 words and was following directions.
I dont think he has a hearing condition, but i seriously wonder if he is able to understand us. Does anyone know any ways I can help with his understanding?
