Tuesday, October 30, 2012

ACC & Moms-To-Be Story #17

I am very thankful to all of the Moms and Dads who
want to tell their story about being pregnant and having
a baby with Agenesis of the Corpus Callosum.

I received an e-mail from Rossella, a mother who lives in Italy who has a young daughter with ACC.

In her e-mail she wrote:

"I am sharing below my pregnancy experience and these first years with Teresa. I know that there is a group with pregnancy stories, feel free to share my story as well. I would be happy if my story can help or inspire other parents."

The mother, Rossella, is very actively involved in the Italian ACC forum (a wonderful group) that branched out to form a voluntary non-profit organization in 2011 called Associazione Anomalie Corpo Calloso Italia, also found on Facebook, and they just recently held their very first Conference in Italy in September of 2012.

Thank you very much, Rossella, for reaching out to other people and for offering hope. It is wonderful to hear from you all the way from Italy, and it's an absolute privilege to be able to post your story here on the ACC blog for others to read.

Each story is as unique as each child who has ACC.

I believe in my heart that every ACC story told will ultimately reach out and touch the life of someone else in very special and amazing ways.

Written by Rossella

Teresa’s Story

I had a relatively quiet pregnancy. I am a United Nations worker and while expecting Teresa I was serving in Congo (Drc) and then in Haiti. So I was healthy and feeling well most of the time and working almost as usual.

When I was 33 weeks pregnant, I started to have strong contractions. I went to my doctor and for the first time he realized that Teresa’s ventricles (I hope the term in English is right!), were too big and he suspected Hydrocephalus. I immediately came back to Italy and had additional check up which confirmed the Hydrocephalus and a suspected ACC. I went through a Fetal MRI scan and the ACC was confirmed. To this day I am sure that the Hydrocephalus is a consequence of the ACC and that all that liquid just took the empty space of the CC [corpus callosum]. Anyway, I was closely monitored and by week 37 Teresa’s ventricles were 27mm. quite big so they decided to go for a C-section as Teresa needed an emergency surgery.

Teresa was born on November 12th 2009 and after two days she underwent her first surgery. I remember the day of the surgery when she came out of the operating room, she was awake, with her head wrapped in a big bandage, she was not crying, she stayed strong. This was moment when Teresa was born to me as a mother, when I promised her I would always stay strong for her.

I have to admit that those first weeks have been the most difficult moment of my life so far. When Teresa was diagnosed ACC and Hydrocepahlus a few doctors told me that she would be severely handicapped and that she could possibly not even recognize me. One doctor suggested I go to UK for abortion
(I was 8 months pregnant!). This was devastating for me as we were not expecting this and as you can imagine those first few days, both me and my husband, Miguel, went first through denial (maybe they made a mistake) then despair and finally we started to accept it. I remember very well that one day my husband, Miguel, told me:

“Imagine if we have Teresa and she is ok, without ACC and without Hydrocephalus, imagine that one day she has a car accident and she becomes paralysed or worse, what would you do then? Abandon her? Throw her away?. So, we will welcome her, we will love her, she is our daughter and we will take her as she is.”

That is how we have lived so far.

Teresa is almost three years old and she is a cheerful and always smiling little girl.

Since she was three months old we realized that she had some delays. She would not maintain her head up and would only look to her right side. We started therapy, first at home and since she was 6 months at a therapy center. She started to sit on her own at 9 months, walked with support at 18 months and walked alone at 22 months. We had a lot of difficulties with mastication (chewing food) and she first ate a biscuit on her own when she was 20 months old. In the meantime we had another baby, a boy, and I am sure that his presence has helped Teresa tremendously. She picked up her first biscuit when her brother 5 months started himself, she saw him and wanted to try. Now at 34 months she eats on her own both with a spoon and with a fork, she eats everything!

Since she was two she started to attend a kindergarten and the presence of other children have highly benefited her.

Her main difficulties remain in her “social” skills and in the speech. She only says a few words, though she makes herself understood with gestures, and sometimes she gets very frustrated for this. She seeks the company of adults as I am sure she is not able to relate to children and she is not able to communicate with them. When other children take/pull toys from her hands she is not able to defend herself, and also with her brother I have seen now that she reacts after a few minutes, not on the spot.

She likes music, dancing and singing and I have realized that if I want her to do something and she does not get it I have to sing it to her.

She goes slowly in her learning process but I would say steady. I can also say that sometimes she remains stuck for a while and then all of a sudden she makes a big step.

Like for months she was walking with a support and then one day, all of sudden I went to pick her up at therapy and she was walking on her own!

She is a cheerful girl, she is very independent in the house and she can play on her own or also engage the adults to play with her. I leave her some “quiet” time, when she can be on her own without too many inputs (school therapy etc) and we have realized that in these moments she invents her games like all children, she plays with her doll (puts her to bed, or she pretends she is on the phone) she imitates the adults like all children.

I attach a couple of pictures, so you can see her. She is the joy of our life.

2 1/2 year old Teresa

Teresa almost 3 years old

Mother of Teresa

There are many different stories and outcomes of ACC and Moms/Dads-To-Be.

I welcome every story.

Do you:

Have questions?
Need support?
Want information?
Have encouragement to give?

Do you want to share your own ACC story here?

If you do, please E-mail me, (Sandie):

Want to talk to other moms (and dads) who have been there and understand? Join the ACC Listserv e-mail support group.

I hope to continue sharing more of these ACC and Moms/Dads-To-Be
stories out in the open in an effort to inform, encourage,
support and help other moms (and dads) out there who are being
told that their baby in utero has agenesis of the corpus

This ACC and Moms/Dads/Parents-To-Be section will always remain open and available to anyone who would like to tell their story.

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.