Others Story

Check out my questioners and email me at accthebridgeisout@gmail.com

Yvonne Williams     Mom to Tyron with ACC

1. When did you find out you or your child had ACC?

I found out when he was 11yrs although Tyrone had a MRI when he was 9 months old and it diagnosed ,I wasn’t I.
2. What advise id the Doctors give you?

Not a lot – saying many live normal lives without even knowing the

3. How does having ACC affect you/your child?

it affects Tyrone on a daily basis, he has learning difficulties, epilepsy, CP, speech & language delay.

4. What is the hardest thing that has having a child with disability taught you? (for parents)

The hardest thing it has taught me is that life can be very cruel and so can people, Tyrone is 22 yrs old d I am still fighting for his rights,his ACC is not obvious ay first but always seems to rear its ugly head from time to time, rape Mally when he is trying to explain what he needs, this is when I have to step in!

5. What do you wish others knew about you/your child?

I wish some people would stop and take the time to learn about the condition. To know that Tyrone is the most gentle young man you could ever know, he is an incredible disabled Athlete who has just been chosen to be in the British Athletes Academy. I am the proudest mother ever! I will do anything to protect my boy.

6. What do you wish Doctors knew about ACC? 

Would wish that doctors have part of their assignments projects be focused on ACC if they have a patient diagnosed with the condition that it be compulsory they learn about the whole aspects of ACC.

Christa Andino     Mom to Nami with C-ACC

1. When did you find out you or your child had ACC?

I found out my son, Nami, had complete agenesis of the corpus callosum when I was 24 weeks pregnant.

2. What advise did the doctors give you?

The neurologist recommended I terminate the pregnancy. I was told that every child is different and we just didn’t know how severe his symptoms would be until he was born and then maybe not until school age.

3. How does having ACC affect you or your child?

Nami is 6 months old. Due to the C-ACC he has colpocephaly, bilateral optic nerve hyoplasia, and hypotonia but for him, so far, he had no delays at all. He looks and acts like any other 6 month old. He smiles, laughs, babbles, sits up alone, rolls over and is almost crawling.

4. What is the hardest thing that has having a child with a disability taught you? (for parent)

Having a child with a disability has given me a new found strength and restoration in my faith. Initially I was very scared and depressed. I didn’t want him to suffer in any way and I have 4 other children so I feared that I wouldn’t be able to handle it all. I was wrong though. I handle it just fine and love him to pieces. He is always happy and doesn’t suffer in any way.

5. What do you wish others knew about you/your child?

At this time, nothing. That might change as he gets older but for now, nothing.

6. What do you wish doctors knew about ACC?

Our physical therapist has so much knowledge on acc from her actual experience of working with acc children for over 30 years…what she has shared with us is priceless. I wish doctors offered more detailed information like she has. I also wish they discussed the concept of neuroplasticity and how the brain will make alternate connections to communicate. I wish they offered exercises or at least information on how to maximize the potential for creating those pathways. I wish they would have told me that his potential is not concrete like the missing corpus callosum…that he can learn what is not natural to him with repetition and patience. I wish they knew more! I certainly wish I wasn’t told to terminate the pregnancy.

Haley Horton     Mom to a son with P-ACC

1. When did you find out you or your child had ACC?

My son was alomost a year old when we had the first MRI, which revealed the P-ACC. I hesitated to have an MRI because babies with hypotonia had a high risk under sedation, so we did genetic testing, and a batery of other tests, and the MRI was the last result, but gave us the answers.

2. What advice did the Doctors give you?

I was told by Beverly Hills neuro that he would never walk, probably not talk, and that I could train him to hug, but it wouldn’t be like “normal” hugs.

3. How does having ACC affect you/your child?

I worry quite a bit, usually at 3am, because he is such a love, and enjoys people so much, but often doesn’t understand facial expressions. It wasn’t until after 3 years old that he would recognize me when I walked in a room.

4. What is the hardest thing that has having a child with disability taught you? (for parents)

The hardest but best thing, is what really matters. It has narrowed my focus from the trivial to the immediate. I don’t have time for drama or nonsense, or friends who promote nonsense.

5. What do you wish others knew about you/your child?

He is the most positive and cheerful person I know, and kindness goes a mile with him. In some early indian societies, a quick answer was considered rude – the person gave no thought to their response and was disrespecting the questioner. My son needs a moment to process his response, and cannot be glib. The response is thought out, including a unusual neural pathway function necessaryto respond. Treat it with respect and wait for it. It’s a miracle.

6. What do you wish doctors knew about ACC?

That each child has a completely different possible outcome – I wish they would recognize how little they know about the brain today, and share that from the outset. Our neuro told me to study the brain, the parts he was missing, and what correlated as to his possible dificiencies. REALLY? I’m just a mom, I majored in English in college – I am NOT a brain specialist – at least, I wasn’t 6 years ago. 🙂

Bron

1. When did you find out you or your child had ACC?

I was 27 years old when i found out I have ACC. I am 46 now.

2. What advice did the Doctors give you?

My doctor at that time said i would probably die or something terrible like becoming a vegetable would happen to me at some point.

3. How does having ACC affect you/your child?

I lived with headaches of a severe nature more years of my life i can count. i cant understand voice tones or expressions of the face, so it causes some issues.

4. What is the hardest thing that has having a child with disability taught you? (for parents)

it has taught me that i am able to do like everyone else just work harder

5.  What do you wish others knew about you/your child?

I want others to know that i want to help others with this problem.

6. What do you wish doctors knew about ACC?

I wish they knew a ton more

Louise     Mom of Louis c-ACC

1. When did you find out you or your child had ACC?

I found out Louis had c-acc when he was 10 months old, by means of a CT-scan.

 2. What advice did the Doctors give you?

The doctors immediately started physical therapy and recommended we stimulate the brain with exercise and reading etc. They said that he could develop normally with some help from therapists

3. How does having ACC affect you/your child?

He was moderately delayed in his motor skills, fine motor skills and social skills. He started walking at 20 months. His educational difficulties are non-verbal learning disorder, fine motor impairment, visual processing delay, difficulty with spelling and writing. He is visually impaired due to oculomotor apraxia.

4. What is the hardest thing that has having a child with disability taught you? (for parents)

To be humble, never give up and keep on trying even when you are spent.

5. What do you wish others knew about you/your child?5

He is a lovely, caring and eloquent child. He would like to be like any other child and take part in activities and have friends. He just wants to be treated as a normal child. He may not look you in the eye when talking to you because of his visual impairment.

6. What do you wish doctors knew about ACC?

What the outcome of each child will be. What the cause is.

Christa      Mom of Nami cACC

1. When did you find out you or your child had ACC?

I found out my son, Nami, had complete agenesis of the corpus callosum when I was 24 weeks pregnant.

2. What advice did the Doctors give you?

The neurologist recommended I terminate the pregnancy. I was told that every child is different and we just didn’t know how severe his symptoms would be until he was born and then maybe not until school age.

 3. How does having ACC affect you/your child?

Nami is6 months old. Due to the cacc he has colpocephaly, bilateral optic nerve hyoplasia, and hypotonia but for him, so far, he had no delays at all. He looks and acts like any other 6 month old. He smiles, laughs, babbles, sits up alone, rolls over and is almost crawling.

 4. What is the hardest thing that has having a child with disability taught you? (for parents)

Having a child with a disability has given me a new found strength and restoration in my faith. Initially I was very scared and depressed. I didn’t want him to suffer in any way and I have 4 other children so I feared that I wouldn’t be able to handle it all. I was wrong though. I handle it just fine and love him to pieces. He is always happy and doesn’t suffer in any way.

 5. What do you wish others knew about you/your child?

At this time, nothing. That might change as he gets older but for now, nothing.

 6. What do you wish doctors knew about ACC?

Our physical therapist has so much knowledge on acc from her actual experience of working with acc children for over 30 years…what she has shared with us is priceless. I wish doctors offered more detailed information like she has. I also wish they discussed the concept of neuroplasticity and how the brain will make alternate connections to communicate. I wish they offered exercises or at least information on how to maximize the potential for creating those pathways. I wish they would have told me that his potential is not concrete like the missing corpus callosum…that he can learn what is not natural to him with repetition and patience. I wish they knew more! I certainly wish I wasn’t told to terminate the pregnancy.

Sharon  Mom to Sophia cACC

When did you find out you or your child had ACC?

Sophia was 28 days old (young) when we were told of the ACC diagnosis. Her birth was traumatic and she had ¨atypical” features, which led to her staying in the NICU for 34 days. Drs were searching and a CT (or maybe it was an MRI) lead to the official diagnosis.

What advice did the Doctors give you?

Not much. The first person to tell us was a Resident. She was great, but didn’t know much. The neurologist was next. He didn’t seem to know much either. He told us that ACC is a ¨spectrum” disorder. Some children develop typically, others have minor delays, other have significant delays, others don’t develop beyond toddler behavior. We had no idea what to do, what to look for…

How does having ACC affect you/your child?

Sophia has epilepsy, which is likely a direct relation to the ACC. She has some learning delays. She has ADHD; OCD; and anxiety. On the plus side – Sophia walks, talks, learns, reads, plays, is funny, acts a lot like any other 13 year old (oh, teen girls). Sophia believes what is said – very literal. She has learned about sarcasm and will say, ¨Sarcasm,¨ when she hears it. She often asks if a comment is ¨for real¨ or if we are ¨serious¨.

What is the hardest thing?

As mom, the hardest thing is seeing Sophia without friends. Kids her age are not (and really haven’t been) able to see past her unusual features and her ¨different¨ look. They can’t sit down and chat and realize that she is fun, funny, silly, smart… They just assume she can’t do things, doesn’t know things… Very frustrating (makes me mad and sad) that kids can’t see her awesomeness. Yes, she prefers animated shows (cartoons) instead of whatever shows kids watch at night (which are shows I think are totally inappropriate for teens anyway). She starts high school later this year; I hope in the next few years some kids will have enough maturity to enjoy her innocence. I like that she isn’t a typical teen with regard to tv, behavior, attitude, boys – lots of things. But it definitely makes her stand out in social isolation.

What has having a child with disability taught you? (for parents)

I’ve learned that life really isn’t fair. Sometimes things happen and there is no reason. I’ve learned that there are some amazing people in this world and some awful people in this world. I’ve learned that my kid is amazing, and her amazingness has taught her sister to be equally amazing (in different ways). I’ve learned that challenges affect everyone – the child, the family, friends… I’ve learned that I have two options: live each day the best I can or don’t. I can be miserable, which doesn’t help any of us, or I can do the best I can each day and hope it is good enough. At least for that day. I’ve learned that others believe I am very patient. I have learned that without adversity, it is difficult to appreciate the simple accomplishments of every day. I have learned that I am not alone. Even if it sometimes feels like it.

What do you wish others knew about you/your child?

I wish Sophia’s peers would learn how great she is.

What do you wish doctors knew about ACC?

Hmmm… We really don’t even discuss her ACC anymore. She has so many other diagnoses, we believe related to the ACC, that those are what we focus on. I am a big fan of family to family connections – meeting other families with a child with ACC and helping each other. We live in a great medical community and are very fortunate to have fantastic specialists here. I think the specialists are key; we see a doctor for many things which means we really don’t rely on the neurologist for much.

Bill  Dad to Maddie ACC

When did you find out you or your child had ACC?

We found out about Maddie’s ACC when she was 3. She had slow speech development and less than ideal motor skills. She fell a lot as a toddler. We noticed that she was very rigid when she was sleeping. Initially we thought she might have MS or some other issue. When she was diagnosed, we had never even heard of ACC and had no idea what it meant.

What advice did the Doctors give you?

When we asked the doctors what to expect for Maddie, none of them had any idea what to tell us. I remember that the neurologist drew a bell curve from genius to profoundly disabled and said that Maddie would probably be somewhere in the middle. I drove my wife crazy asking which side of the middle we could expect and the doctor couldn’t say. We decided that if someone who spent all that time and money to go to medical school couldn’t give us any idea, we were just going to expect the best from and for Maddie. Our pediatrician agreed with our outlook.

How does having ACC affect you/your child?

Maddie had been in physical, occupational and speech therapy both in school and privately since before her diagnosis. She is on an IEP at school and will continue to be until graduation. She is a very smart little girl, but she learns in a different way and at a different rate than her peers. She is also socially immature for her age. She gets special help at school and outside for her learning differences. She only has only a couple of good friends her age. She gets along better with kids younger or older than her. The friends she has are very understanding and nature for their age.

What is the hardest thing that has having a child with disability taught you? (for parents)

The hardest part is not knowing what to expect for and from Maddie. This is an uncommon disorder and almost everyone that has it has something else going on along with it. The one thing that all people with ACC seem to have in common is a problem with socializing with same age peers.  That’s really tough to see in action when it’s your daughter and she really likes the other girls in her class, but doesn’t act in a way that they want to play with her. Having a child with ACC has taught me to cherish small victories. It has taught me that you have to fight for what you want or you won’t get it. It has taught me patience. It has taught me that different is beautiful, challenging, painful at times, but never a bad thing. It has shown me that there are angels among us in the most surprising places. It has taught me thankfulness that, even though she has issues, they aren’t as bad as others.

What do you wish others knew about you/your child? 

I wish people just took Maddie at face value. She is such a sweet and wonderful girl. Sure she is quirky, but she’s also really funny. I wish her peers knew how much she thinks about them and how she talks about them all the time.  I wish that kids who the work comes easy to knew how hard she was working to keep up wether it’s school work or trying to jump rope. I wish they knew how happy it makes her to be invited to a play date or party.

What do you wish doctors knew about ACC?

I wish doctors had a better grasp on what to expect and how better to help children with ACC learn. It’s different for everyone, but all learning is. It’s unlike any other issue that people have because it varies in its severity and its prognosis so widely. As a parent, that is both comforting and frightening at the same time.

Laura

When did you find out you or your child had ACC?

My parents found out about my “near total” ACC and Ventriculomegaly (enlarged ventricles) when I was two years old (I am now 30).  I’d had an (unrelated) seizure, and my parents found their way to a neurologist where they discovered the ACC.  This was 1985, mind you, so not much was known about it at the time.  My development (walking, talking, playing “well” with others) was on par, so the neurologist was not worried about me.  He said that I was a “poster child” for ACC, and advised them not to treat me any differently than my siblings (I’m the middle of three girls).

My mother and pediatrician told me about my diagnosis when I was 12.  My mom called me her “miracle child.”  My ACC is “hidden,” and suddenly things started to make sense… such as, I was always delayed in my scream when surprised (processing time takes a bit longer for those of us with ACC).  My friends always thought that it was HILARIOUS when they would jump out from behind a corner and yell “BOO!” while waiting the requisite second or two before my brain caught up and I yelled out in surprise.  As I aged, it also became a lot more understandable why I was so quick to tears and so REACTIONARY in my frustration.

What advice did the Doctors give you?

The neurologist that my parents sought out advised them not to treat me any differently.  Basically, to not put me in special education.  Now as a teacher of early childhood special education (3-5 year olds with special needs), I feel conflicted about this decision.  I grew strong and perseverant without anyone putting a label on me.  And yet, to this day, I remain delayed in my “social-emotional” development.  I am quick to tears, something that I understand can be related to ACC.  As a child, I remember feeling like I would hit the same brick wall again and again before pounding my way through.  Sometimes I wonder if this would have been different for me had I been taught emotional regulation skills at a young age.  Nevertheless, I am grateful for the path that I have been charting for myself… even if it’s littered with crumbling bricks along the way.  One of my best friends likes to say, “Even if you fall on your face, you’re still moving forward.”  I take that saying TO HEART!

How does having ACC affect you/your child?

Oh my gosh, in so many hidden, hidden ways.  I wear my heart on my sleeve.  I share my emotions with ALL, and sometimes I’d think I was bipolar if I knew it wasn’t true.  In school, I struggled with staying “on par” with my sisters and peers, even when I eventually started to fall behind with my comprehension of the schoolwork.  I wanted to be JUST as capable as they were, although it took getting 504 accommodations when I was 15 before I could reach this potential.  (I was starting to fall behind because the “visual clutter” on math homework would overwhelm my brain; or because my writing speed was literally 50% slower than my peers, making it difficult to finish tests on time).

I also struggled with a lot of anger stemming from frustration.  I did not understand why things seemed to come faster to my sisters and peers.  Or I would get overwhelmed in a loud environment (think mall) and shut down.  Or tantrum… one of the two.  I am grateful to have a family that has stood by and supported me through all of it.  The ups and the downs of having a child/sibling with a hidden disability.  In fact, my “little” sister likes to say that “We thought she was just a hellion, but it turns out that she’s a celiac who’s missing a piece of her brain.”  And then we all laugh.  Honestly!  (On top of the ACC, I cannot digest gluten.  Which I ate every day until I was 25… wrecking my digestive system and overall health with every bite.)

Lately, it’s been affecting me at work.  I can get ALONG without accommodations at work, but I’ve recently started asking for them in order to make my life easier.  It’s kind of like going back to school and figuring out what accommodations I need in order to thrive.  But this time in the professional world.  I’ve started asking for ADA accommodations, and it’s intimidating.  For me, and also I think for my employers.  It seems as though they have started stepping lightly around me.  It’s a really awkward space to be in as I muddle through what adulthood with ACC looks like.  But here we go any way… another brick wall to navigate…

What is the hardest thing that has having a child with disability taught you? (for parents)

I’m going to answer this question as a person with a disability.  I like to say that I have a disability, but I am not disabled.  Sure, you can tell that I’m a tad “different” when you see all the bangs and bumps on my Subaru outback (ACC brings about spacial awareness difficulties).  Or when tears are brought to my eyes as a vestige of frustration.  You know, my life is not just about how the ACC impacts who I am.   But I am SO thankful for all of it.  It has made me who I am today.  Resilient.  A fighter.  A survivor.  I never give up, and I have the most amazing people in my life (my family and friends) who hold me up and support me every step of the way… even though I recently move and now live an hour south of most!  I know that they are there with me in spirit.

The most amazing thing its taught me?  Empathy.  And how to listen.  How to hold a crying child with special needs in my arms and given them unconditional understanding and support.   How to advocate and understand what others are going through.  How to be there for the parents of children with disabilities, and let them know that I will support them and help their child learn and develop with the specialized instruction that they not only need, but deserve.

What do you wish others knew about you/your child?

It’s not easy.  But it’s kind of amazing to have this neurological “defect.”  I wouldn’t trade it for all the “typical” brains in the world.  It’s made me who I am, and I am so thankful for that.

Oh, and also that MUSIC is key.  If I were to impart anyone with knowledge about someone with ACC: PROVIDE THEM WITH A MUSICAL OUTLET.  Have them learn an instrument.  Learning the piano at a young age sculpted my brain in a way that was only beyond beneficial for my ACC.

What do you wish doctors knew about ACC?

Hmmm… it’s kind of fascinating to learn as they learn.  Can I be part of a study PLEASE?! 😉

Anonymous

When did you find out your child had ACC?

I found out when he was five months old.  He had an MRI of his brain because he wasn’t tracking with his eyes correctly.  Instead of finding anything majorly wrong with his eyes, the doctor found out that he had Partial ACC.

What advice did the Doctors give you?

Well, he was so young but the Dr. reassured us that he could live a perfectly normal life but that we should start him in therapies to help him along. All of the doctors that we saw when he was a baby/toddler told me that many people with ACC live a regular lifestyle and that they believed he would fall into that category.

How does having ACC affect your child.

I think it affects everything about him. It makes him sweet and innocent for his age, but also a bit whiney for his age too! He is a little low-toned, meaning he’s not as strong as he should be. His hands mirror image each other sometimes, like if he is erasing with his left hand, he will move his right hand on the desk at the same time. For being as smart as he is, sometimes he will come up with questions that seem like a little kid may ask, and I have to ask him if he really meant what he just asked! What I love so much about him is that he will think about it and sometimes even laugh a bit and think ‘no of course not’!  There is a sweetness about him that is hard to describe, (but every adult who knows him well tells me how wonderful that is) and I think that is also because of his ACC.

What is the hardest thing?

He doesn’t ‘get’ things as fast as his classmates sometimes. So he takes a study skills class instead of a fun elective. He actually likes the class with his friends and he gets to learn at his own pace, but he still has to keep up with all the other kids in every other subject. He thinks math is the hardest thing about having ACC! Sometimes he doesn’t know what to say to people.

What has having a child with a disability taught you?

He has taught me to never give up hope. He has taught me to teach him and push him to do his best, even if I need to explain something in detail many times or make him to do something fun like call a friend to go to the beach! He has taught me that our family bike rides, his karate classes, spending many hours each day when he was young playing and doing art projects, play-doh, etc, that all of that is just like the best, most expensive therapy out there!

What do you wish others knew about you/your child?

I have the same wish that most other parents have! I so wish that more kids would give him the time he needs to show them how fun and great he can be. He has always loved to be social, to be involved in activities, but he doesn’t always get invited or have friends to go to events with.  He does have a few very good friends.  But i would love it if he were included in a lot more. For most of his life, he’d have at least one friend that would tell him that he’s the best friend they ever had and talk about how great he is.  But the older he gets the harder it is for him to have friends outside of school time and I just want him to be invited out because he has so much to offer.

What do you wish doctors knew about ACC?

I wish they could tell you for sure if an ACC kid will ever develop seizures. I wish they could predict which areas each child may have difficulty in, that way we could prepare them from a very early age to help them along.

Shawn   Mom to Connor 6YO c-acc

When did you find out you or your child had ACC?

When I was 31 weeks pregnant.

What advice did the Doctors give you?

Basically, wait and see. The doctor had Zero advice about what we would be facing once he was born. Other than to tell us that if he had other syndromes it could be a lot worse. If he did not, he might act like a normal child. The Dr wasn’t very helpful or nice. This was my high risk doctor.

How does having ACC affect you/your child?

Right now he is 6 with c-acc. He doesn’t know that he has this condition. Though I think he might realize he is different from other kids, he hasn’t questioned why. For the most part if you pass my son on the street you wouldn’t think there was a problem. It’s when you sit down and talk to him or work with him on something that you start to realize that there might be something. His speech is just a little off (we have used lots of speech therapy. When he gets excited he has a hard time putting all of the words together the right way so that they make sense. He is very literal so he doesn’t understand little quips or jokes that friends or family might make. He takes them very literally. For example if I said, “Ohh your Dad is going to kill me because I spent so much money” he would ask me if his dad was really going to kill me.  Also if we joke with him lately he will immediately follow up with, ”REALLY?!” or he might ask us if we are just kidding him, “Your kidding, right Mom?”

I’d say for the most part he seems to be about 8 or 9 months behind his peers both intellectually   and socially. He is a super smart kid though, it just might take him a little extra time to come up    with the same answer as his friends on any given task. Also in sports he lags a little bit. In soccer   or Karate, he might be just a second or second and a half behind when kicking the ball or    performing a move.

What is the hardest thing?

Remembering that he does have a disability, and not trying to pressure him too much to measure up. Even with little things like daily hygiene. I’m sure I’ve instructed him hundreds of times on how to take a shower and get ready for bed. We have made flow charts, and pictures to follow on how to perform these tasks for example. None of them work. We have to help him, walk through each step every night.  It’s hard to not get frustrated with this because you cannot SEE the disability. You think gee shouldn’t he be picking this up by now? Well, maybe, but no not always. I wear an NODCC blue and white bracelet all the time, to remind me that hey, he is a little different and I can’t treat him like he’s not. This helps to remind me to be fair and keep his condition in mind in all things we do.

What has having a child with disability taught you? (for parents)

It’s taught me that where there is a will there is a way. That having a child with ACC, means thinking outside the box. Getting into his head and trying to think how he would think. All things are possible! I truly believe it, my 6 year old who fought tooth and nail last year is learning to read this year!!! It just took family and teachers alike, thinking outside the box to come up with a way that worked for him to learn it. Any child with a disability can do anything they set out to, as long as they truly believe they can, and they have a support system of people to help them reach their goals. WE must be our kids’ strongest advocate.

What do you wish others knew about you/your child?

I wish that people knew that he is the coolest kid! Already in 1st grade we have had shunning and teasing. I wish that people, especially typical kids, took the time to get to know him. If they gave him a chance they would see that he is so much fun. And he just wants to be accepted in social situations, though they might be hard for him. The hardest thing for me to see as a parent is my child not having a playmate, not being accepted to play, while all the other kids are. It doesn’t always happen. But when it does its unbearable to see.

What do you wish doctors knew about ACC?

MORE!! I just wish they knew more. Not only about the condition itself, but also why it happens. Things that we can do to help our kids. I know there is much research going on. Hopefully parents 10 to 20 years down the road will have more knowledge than we do today. Just as we have more knowledge than those before us had.

Kristin    Mom to Celeste 16 cACC, PVNH and seizure disorder

When did you find out you or your child had ACC?

Celeste had just started 5th grade. She was 10 yrs old.  She had always struggled. She was in Early Childhood Intervention when she was 18 months old. She was in speech therapy all through preschool.  No one could tell me why learning was so hard for her. Once she began school, her struggles became very clear to me. Teachers, however, kept saying she was fine, but I knew we were missing something. She was finally dx with dyslexia, but even dyslexia services proved to be unhelpful.  She just continued to fall further and further behind, With this came anxiety. She began to just cry at the thought of going to school. By 5th grade we were at a loss. We decided to try an unproven alternative therapy called biofeedback. During a quantitative EEG, she had a 28 second seizure. This seizure was unrecognizable to those around her, but it certainly was clear on the EEG. This led to a 2day hospital stay where she had over 60 seizures in 23 hours.  The subsequent MRI revealed ACC and PVNH.

What advice did the Doctors give you?

The neurologist called to give us the results of her MRI. When he said she had ACC, I had no idea what he was talking about. I had never even heard of the corpus callosum. The first thing he told me was she is the same child she was yesterday, before this diagnosis. He said she is an amazing young child who has adapted incredibly well, considering. He then gave us the contact info to the NODCC and said they hold conferences where we can meet others and talk to doctors who know much more about ACC.

How does having ACC affect you/your child?

Celeste is now 16. She still struggles to read. School is so incredibly hard for her. Word retrieval is often a problem and her processing speed is very slow. This makes communication difficult. She needs a little extra time to think and organize her thoughts. This is hard in the fast paced world we live in, today. Celeste is very literal in her words and thoughts. Things are black or white. Nonverbal cues and body language are things often lost on her.

What is the hardest thing?

Her struggle with social situations is the hardest part of ACC, for me, as Celeste’s mom.  I love that she is not as socially and emotionally mature as her peers, but it is painful to see her struggle to make and keep true friends. She is a beautiful and caring young lady, but often her peers do not give her a chance to show just how wonderful she is.

What has having a child with disability taught you? (for parents)

We like to say Celeste’s ACC is an invisible disability. It is a blessing, but it also can make it so hard to get others, especially teachers, to understand her true need for services. Parenting Celeste has taught me to slow down. Life is beautiful in its simplicity. We are so busy and so plugged in. Having a child with a disability keeps you grounded. It reminds me to keep things in perspective. When you have a child who struggles every single day just to manage the simplest of things, it makes the petty worries of the day melt away.  Celeste was diagnosed with epilepsy, which is how we discovered her ACC. For the first year after her diagnosis, every time she climbed out of my car to go to school I worried. I worried every time she took a shower. The three times daily she takes medication has changed our world. We have all adjusted, but loving a child with any type of disability changes the family.  Fortunately, it is for the better. We all are stronger and better because of Celeste.

What do you wish others knew about you/your child?

Celeste wants all the same things everyone wants. She wants friends. She wants to feel accepted. She wants to feel valued. I want others to know Celeste is the hardest working child I have ever known. Most importantly, I want others to know that my child has a heart of gold. She loves little ones. She genuinely loves to play with them and see them happy. It is what makes her such a wonderful babysitter. Bonding with peers is so difficult but bonding with those younger comes naturally.

What do you wish doctors knew about ACC?

MORE!! Yes, more! Celeste’s neurologist admits he has very little true knowledge of ACC. The affectedness varies so much that it impossible to make any generalizations. ACC is a wait and see diagnosis. No doctor can predict how your child will be affected. It is both hopeful and frustrating.

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