Wednesday, October 24, 2012

Communication - input from parents

The topic of speech-verbal language (or lack thereof), in some children who have ACC, comes up often by concerned parents in the ACC support groups.

Sometimes I discover that there are hidden gems of information buried in some of the larger ACC documents that have been posted on this blog. So, today I decided to revive this buried treasure (found in the ACC-Reading and Comprehension document) involving communication and kids who have ACC.

Below are some of the comments, written by parents of kids with ACC, regarding the topic of verbal language.

First parent writes:

"As a baby Abbie didn't babble. She was a very serious baby. At about age 2 she went from virtually no speech, apart from a few single words and their varied mutations, to almost full sentences. She'd obviously been listening and observing."

Second parent writes:

"Lexie never babbled either. No mamamama or bababababa. Also, she never said uh-oh like all other babies. Same goes with what does a cow say...."mooooo" Nope! She, too, was a very serious baby. At age 2 she had virtually NO words. Then suddenly, somewhere after 2, she began talking. I would not say full sentences over night, but to us it was drastic!"

Third parent writes:

"Ryan started speech therapy at 15 months old. For three long months, once a week, his therapist would go over the signs 'more, all done, open' and maybe 3 or 4 other ones. He couldn't care less! He never seemed to be looking at our hands (of course I kept trying to teach him)... he had lots of fun playing with her, but didn't pick up on the sign thing AT ALL!

At 18 months we were on vacation in Ireland, when his daddy realized he forgot the video camera in the car. So he went to get it. While he was gone, I was tickling and picking up Ryan for about five minutes. Then I stopped. Then we looked at each other and he signed "more". I screamed 'what'? And he did it over and over and over again. Just in time for the video camera! By the end of our two week vacation, he was signing more, all done and open. The amazing part is that it really seemed like he never paid attn to the therapist and to me for the three months we tried to teach him those signs!

Luckily he got kicked out of speech therapy at three yrs old when he said his first 10 word sentence. Speech has never been an issue again."

Fourth parent writes:

"I had worked with him [my son] for one whole year trying to teach him how to say the word "bye bye". We flew to Hawaii and were waiting for our connecting flight to Maui. My husband went outside for something and out of the clear blue tropical sky I heard Matthew say "buh bye" and I nearly did a little dance...the kind of I can't believe he just SAID it dance. My husband was gone and couldn't hear this wonderful new first word that our SEVEN year old child just said. I grabbed my cell phone and called my mom (as Matthew was still saying "buh bye"..."buh bye") and I got her answering machine. I put the phone up to Matthew's mouth and he SAID "buh bye" a few times. My mom heard it later and kept it on her answering machine for years.

While Matthew is still non-verbal with only a handful of words...I continue to help him with speech because he makes a lot of sounds and is trying hard to put simple words together even though he doesn't know he's doing it. I hear him sometimes out of the blue say a word while he is watching TV. For example, he saw a baby on TV and said "bay-bee" clear as day without any problem. I will never give up on him talking and will continue to work with him and believe in all of the things that he is capable of doing no matter how old he is or what anyone else thinks."

Fifth parent (of 16 year old child) writes:

"My son William had a list of things (an entire page long) we were told he "would never do." REALLY? He was 3 years old when we received this list from our "doctor". At 3, he spoke 5 words that were understandable (mama, dada, jojo, baba, & more). His speech was defined as "largely unintelligible sentences" for *MANY* years. Meaning, we were the only ones who truly understood him....that was from age *3* to age ?? (sorry I lost track... but it was a LONG time).

Well, let me tell you what a difference 13 years of advocating for speech services can make...I CANNOT keep him quiet now...he pretty much NEVER shuts up (and I say that with TOTAL LOVE in my heart) and he is *completely* *understandable*. He talks "a mile a minute!" There is NO misunderstanding him now!! He is even described by his teachers as very polite and social. He has no problems with his socialization skills.

Oh yeah one more thing, about that list we received when William was 3 years old...I'm elated to say, he does everything on that list and much more, with ONE exception....he still cannot read, but he will (I have Faith)...and as GOD is my witness, if it is the *VERY* last thing we teach him...HE WILL READ."


Sixth parent writes:

"My eleven year old son who has complete acc has no problems with his speech per se and never has, he has always passed the milestones like an average child. He can read but it has taken longer, he is at the stage of reading slowly and in a monotone voice, has yet to read with intonation or inflection in his voice. I know this will come with time.

He does sometimes have trouble with his 'train of thought' when trying to relay something to me, he needs extra time and hates to be interrupted, which is understandable.

Otherwise , his communication skills are pretty 'normal' for his age."

Seventh parent writes:

"JM is 4 years old (full ACC), he still speaks no word, just makes some sounds like "tetetete."

However, we realize that he understands and makes requests through some gestures. The hearing test showed hearing perfection.

We continue to stimulate speech, we believe that it will come. At the same time, we will start using alternative communication."

Eighth parent writes:

"Our daughter started babbling dada and mama at 4 months. She was quick to add to her vocabulary list and by one year she had about 25 words. We noticed from an early age that she listened and responded to music in a way that was almost magical. She would seemingly concentrate on the words while the music inspired her to move and dance. She is still rather musically inspired and her concentration while listening to music has transferred to her concentration of listening to language.

She is now 2 1/2 and she speaks in full sentences with near perfect enunciation. She isn't necessarily slow when speaking, but mindful of saying each word properly. When comparing speech to her older sister, my younger daughter has a much more developed vocabulary at her age. (Of course having a sibling close in age undoubtedly helps.)

She also has playful voices for when she's silly, or a "scary monster." She sings songs and can recite nursery rhymes. We feel her grasp of language is more "advanced" than her sisters was when she was her age.

We found out that she was put together "extra specially" while I was pregnant. The doctors prepared us for very involved disabilities with little hope for a bright future. I know there are lots of children with ACC that are mildly affected if at all but we just never heard about those children when we started to learn about ACC. Our daughter has had very typical development and has even been ahead in some areas."

Ninth parent writes:

"I can respond to the delay in talking....My son is 13 years old and was diagnosed with partial acc when he was 9 months old. He received much therapy while he was young (until about 10 years old). He learned to walk at 22 months and communicated his first true interactive word through signing at 24 months. We were told back then that children typically learn to walk before they talk. This held true for my son. He quickly moved from signing to babbling, to words--all while in speech therapy. He was speaking by three years old and remained in speech for articulation issues until he was about 5. He continued with speech therapy (with a few extended breaks) until he was 10 years old to deal with using language for social interactions."

Would you like to include your input about your child who has ACC and communication? Please e-mail me your story and I will gladly post it here on this page.

I welcome and encourage you to share your own comments.

For more information about Agenesis of the Corpus Callosum and speech therapy, check out the document below, which was presented at the 2004 ACC Conference.

Speech & Language Issues Associated with ACC - by JoAnn Tully, MS-SLP

*Note: JoAnn Tully is the mother of a grown daughter who has ACC and is also a Speech-Language Pathologist.

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