Starting off

[lauras]

Just found this message board. My daughter is 14 she has ACC
She was diagnosed at age 18 mos, so fairly early. She did not walk until she was almost 2. At age 3 she had a 10 word vocabulary. Tests revealed she was functioning on a 18month old level at age 3.
She has been in spec ed since preschool. Main streamed as much as possiable. She has a lot of problems with motor skills.
And expressing thoughts.
Right now I am struggling with social issuse with her. There are activites that she could participate in at church such as camp. This year she did not want to attend. I didn't make her because we are at a new church, and it a diffrent camp and I would not be there.
But they are planning a trip for Labor Dayweekend, question is" Do I make her go?
If this is choppy, sorry, I have spent most of the evening alternately crying and praying.
The teen years are so hard, and its harder when you face special challenges. How can I best help my daughter?

[matthewsmom]

lauras,

I am also the mom of a child who has ACC. My son is 15 years old. Like your own daughter...my son, Matthew, was also in special education from the beginning of his schooling with mainstreaming for 50% of his day. Of course, as he got older it became more difficult to include him in mainstream as much as he was in his early grade school years.

My heart goes out to you with your expression of heartbreak regarding your daughter's difficulties and challenges with socializing. You are definitely not alone in those feelings. So many kids who have ACC struggle with social skills and have great challenges when it comes to being able to make a friend, know how to approach other kids their own age, keep a friend and with being able to express themselves. It also becomes more difficult for a child with ACC socially as they get older. Often times kids with ACC get along better with either younger kids or adults.

So many parents look for ways to help their kids who have ACC learn social skills and while some find help within the schools with social skills lunchtime groups...it seems that many parents find it difficult to find the help that their child needs to be able to learn HOW to socialize.

One of the research studies done on high functioning people with isolated ACC showed that they also struggle with social skills.

It's so hard to know as a parent what to do for our kids who have such great challenges and it hurts to watch them not be able to fit in easily with their peers and struggle to make a friend. I don't think that anyone can actually tell you what to do for your own child because you are the one who knows your daughter so very well. You will just know in your heart what is best for her.

It seems to me that if a child is struggling socially and does not have the proper tools and skills to approach children their own age and interact that there would be a lack of self confidence and self-esteem if they continued to try and continued to be made fun of or weren't received warmly by those kids. It would definitely be a big blow to anyone's self confidence and even I would want to shy away from being around other people if I continually struggled with what to say or knew what I wanted to say and couldn't easily express my thoughts and if I tried my best and someone laughed or wasn't helpful and friendly in return.

I don't think I would want to make my child who was uncomfortable and lacked the skills join in with a group without my child being at least somewhat comfortable with the idea. I don't know how well your daughter is able to express herself with you but I'm sure that you have tried to get her to talk with you more about why she doesn't want to go to the church social group.

I am wondering if maybe there is someone in the family who is around her age or a little older who could possibly go with her to help her interact and be a support for her so that she could feel comfortable in knowing she had someone with her, a friend, someone she trusted. Perhaps that may help her to feel a bit more open to the idea of going to the church social event.

I am not sure if you are aware of the ACC-Listserv. There are many parents who belong to that e-mail support group who also share your own feelings and who have children who struggle socially who also have ACC. It's just a thought and I don't say that to take you away from this type of forum at all. It's just always nice to know what is available and how to access the many different types of support, I think.

I am so sorry that you were in tears and crying during the day and through your post over the situation. I will definitely keep you and your daughter in my thoughts and my prayers. Please feel free to e-mail me anytime.

Sandie *Mom to 15 year old Matthew with complete ACC in Oregon*

[msp123]

Hi I am a relativley new parent to this condition my daughter is 7 years old and was diagnosed last November with ACC my daughter is learning she is now different to other children she goes to mainstream school but 2 days ago i mentiond to the teacher if she would benefit from going to a special school i had a meeting with the special needs co-ordinator at the school and they didnt seem to think she needed to go they said if u think she is the only one in the class or school with learning difficulties your wrong and they said that they prefer it now if children went to mainstream instead of going to special schools..

the reason i think she needs to go is that she is getting bullied at school to the extent that she felt the need to run out of the school gates and cry to come home to me the other day and so i felt that maybe she needed to be with other children with special needs that are at her level also i think she just doesnt need to study the curriculam like a text book child she is so far behind that she sits with her assistant teacher in a group of 3 and they learn something different from the other children they said that at the start of the year she couldnt write a sentance but now at the end of the school year she has learnt how to write a little sentance now and they feel that she has come on very well they also said the same about her speech and language that shes come on with that but she still struggles to get her words in the right order or context i think she needs to learn more social skills and behavior skills and skills for daily life rather than the educational side as the years go by the gap between other children widens and gets further and further behind her class to make my daughter feel better i told her that i had special needs as well as the kids keep telling her ''haha uve got special needs'' so i said dont worry we are both special evertime she gets bullied i ask did you tell your teacher and she says no she use to but i think coz that they dont seem to be doing much about it she doesnt tell them anymore so i always go and make sure they know i think that thats why she decided to do a runner out of the gates coz she had had enough as when i asked why she had run out of the gates she told me that a boy had been spitting at her

I just dont know what to do she tries to socialise with other kids but because she is quite immature for her age they dont really want to accosciate with her i have witnessed the bullying right infront of my eyes where walking home from school some child went passed and knocked some fruit out of her hands and the only thing i could do was give the kid a dirty look or other children tell her to do funny and stupid things and she does them and they all laugh at her

I dont know how much help we should be recieving either all that happens at the moment is i see her consultant every 6 months we discuss how shes doing he writes it all down and says ill see u again in 6 months ive being seeing this consultant since she was a year old back then we didnt really know what was wrong last year we really had to fight to get answers one genetic doctor told us ''the lights are on but no one knows if the electrics are working properly'' then told us we didnt need a MRI so with that i got very angry and then her consultant said well i suppose we could have one then we found out about the ACC i dont actualy think he knows much about the conition his self as he's not very helpfull at all ive had to learn everything by talking with other people looking at websites but i dont think their is much on how you can help ur child cope how how a parent is suppose to cope shes also a very hyperactive child and some people just sort of ignore the fact that children have learning difficulties just a few weeks ago some woman told me cant u keep ur child under control (all she was doing was running around the bus stop noisley ) if i handnt have been pregnant i would have smacked her

and thats another storey im due in 6 weeks with a little boy (thankfully we have checked and he doesnt have the condition) but i dont know how shes going to react shes relly excited for me at the moment and cant wait for her baby brother to ''pop out'' lol but when it comes its gonna be a different storey and she wont be the only child anymore getting all of my attention we have been incliding her all the way through and showing her week by week how he's growing showing her the scan pics and ask her if shes going to help out with her brother when he comes but shes not very carefull when it comes to handling babies altho her consultant thinks that maybe it will make her ''grow up a little'' his words not mine

So if anyone wants to give me advice or share the same expreiences i would be gratefull for that

[colinsmom]

Hello..I dont know where to start. The bullying part is something I would attack first. I have not had to deal with it with my son because the school has zero tolerance and maybe we are just lucky. She is too young to have to deal with this herself. It seems the school has failed on at least two fronts so far... the bullying and the not understanding she does need special education. I would consider putting her somewhere safe for now since she is so young. What are your options for other schools? I wouldn't worry about the social stuff right now. Most ACCers dont mind their social status'. Is the consultant a medical person or an academic person? Can you get another consultant person to listen and assist. It doenst sound as though you have a decent support group. Plus you are from England so I dont know how much you are entitled to. The last thing you want to do is slap someone but I know how you feel.. I have had that intense need to react myself. You can't change it all at once but I would definately lodge a complaint against the school if she is bullied like that.

[matthewsmom]

Hi msp123,

It sounds like you have already been through a lot with only recently finding out that your daughter has ACC and needing to stand up and convince the consultant that an MRI should be done so that you could find out this information.

Kids can just be so cruel in school even when you're a typically developing child. I am so sorry that your daughter is being bullied and treated so badly at school. It isn't right and it's not fair. I would definitely want to address that issue even if it meant going to the top of the school board or removing her from that particular school if they failed to take your concern/complaint seriously and address it.

I am not familiar with how things work in England with respect to the school situation and special education classrooms or schools. I don't know if you have rules and regulations that govern the education process and special education process that must be followed like we do here in the US.

I know that as moms we want to rush in and make everything better and protect our kids. I could
not stand the thought of my own child with ACC being bullied or having to endure what your daughter is going through. I can understand your feelings about wanting to just remove her from the class she's in now and put her in special education but then you also said something in your post that makes me feel like mainstream school has it's upside as well (just maybe not THAT particular mainstream class/school she's in right now). You wrote that she is making progress with her writing and with her language. I don't think I would want to put a child in special education to work on life skills only if they are able to comprehend and make some progress in academics. Perhaps a blend of the two could be a workable solution that may benefit your child. I think that only you, as her mom, can make the right decision for her because you know her so well and know what she needs and will benefit from.

In the US if a child is put in a life skills special education classroom (where my own child was) there is also a
downside in that they could remain isolated in that room all day and be with other children who more than likely will not model typical developing children skills and language. Usually the kids in these types of classrooms have profound delays and many don't even have any verbal language. There is also the possiblity of having kids in these kinds of classrooms who have behavior issues and challenges. Often times these kinds of classrooms have a small number of kids (usually under 10 kids) with several aides to help the teacher and all the kids are working on their own individual goals. I had it written into my child's plan that he would mainstream for 50% of his day in appropriate activities because I did NOT want him isolated in that kind of environment or atmosphere that a special education life skills classroom has.

I would definitely want to have a meeting to address your concerns with your daughter's school and then be prepared to stand up and be a strong advocate for her rights and her needs because you are the one who truly knows what is best for your child. The school can tell you all they want what THEY feel is best and should be done but hopefully in England the school does not have the final say. It's difficult, like I said, because I am not familiar with England's rules when it comes to special education or mainstream schooling.

There must be other options for your daughter besides the school where she now attends. Ask the school to give you all the other options available for your daughter's education (both mainstream and special education) and then be sure to go and visit the classrooms. I always went and spent time observing a classroom before I ever agreed to put my child, Matthew, in any classroom. And then I went back and re-visited often and continued to make sure that it was still an appropriate environment for my child.

I would also suggest that you go back often to the classroom and be sure that it is meeting her needs. Definitely stay involved. I am unsure if the consultant you mentioned is a medical doctor or a school board consultant? I would either get another "consultant" and/or see either that particular consultant or another consultant more often than every six months. If your child's medical doctor is not interested in learning or understanding about ACC then maybe it's time to find another doctor who either is aware of ACC or will become better educated regarding ACC in an effort to better help his patient.

Another thing that can be very helpful is to have a child who has ACC have a Neuropsychological Evaluation to help determine the best possible teaching methods according to their strengths and skills. Here in the US you can request to have this evaluation through the school or you can find someone outside of the school to perform a Neuropsychological Eval.

It would also be very beneficial to educate the doctor and school about ACC. You could take in some of the various documents and information explaining ACC and make them fully aware of the struggles and challenges that can occur when someone has ACC.

There is an excellent book called ACC & Me that is available and it could help explain to your child's class and teacher what ACC is. It is written about a 10 year old boy who has ACC. You can obtain a copy of the book when you register through the National Organization for Disorders of the Corpus Callosum (NODCC) or through the ACC Network.

I will list several links to information about ACC that may be helpful for you and also the link for how to obtain a copy of the ACC & Me book.

I can send you a document that was written by a teacher who taught a child with ACC in his classroom. It has a lot of helpful information that could be good to give to your daughter's teachers as an insight and glimpse into the world of ACC and teaching kids who have ACC written from a teacher's perspective. If you would like to receive a copy of this by e-mail please send me an e-mail request or send me a PM with your e-mail and I will be happy to send it your way.

If you would like help putting together information to give to your child's school and teachers about ACC please let me know and I would be happy to help put together documentation for you. I definitely recommend the ACC & Me book because it will give great insight from a child's perspective and is written on an easy to understand children's level.

My heart goes out to you and your daughter. I know that you and she both will get through this and move forward to a place that is positive and a place that will allow her to receive an education within a peaceful and welcoming environment that will nurture and respect her uniqueness so that she is able to learn to her greatest potential.

Sandie *Mom to 15 year old Matthew with complete ACC in Oregon USA*

Educational Suggestions:
www.nodcc.org/pdfs/Conference_Handouts/educational_suggestions_for_children_with_acc.pdf

ACC & Me Book:
agenesiscorpuscallosum.blogspot.com/search/label/ACC%20and%20Me%20Book

NODCC:
www.nodcc.org/index.php

The ACC Network:
www.umaine.edu/edhd/research/acc/

CORPAL (support group in the UK)
www.corpal.org.uk/

ACC & Challenges:
agenesiscorpuscallosum.blogspot.com/2009/06/acc-challenges.html

ACC & Teaching Resources:
agenesiscorpuscallosum.blogspot.com/2009/06/teaching-resources.html

ACC-Angels Around The World:
scenicbeauty.tripod.com/AngelsAroundTheWorld.html

[matthewsmom]

Hi msp123,

I am replying to your message that was on the General Board here since your first post about your daughter with all the details are mentioned on this particular board (ACC Parents).

You are definitely not alone when it comes to not receiving information from a doctor regarding the diagnosis of ACC or what it means. This happens TOO OFTEN. More doctors need to become aware and research Agenesis of the Corpus Callosum so that they are able to better care for their patients who receive this diagnosis and give the parents necessary information. You are not the only one who isn't getting accurate medical information about ACC after a diagnosis. This type of thing happens far more than it should and makes it all the more apparent how much awareness about ACC and corpus callosum disorders needs to happen.

I can give you information based upon what I have learned from my own son's team of medical doctors regarding ACC over the past 15 years and from talking/writing with other parents who have a child with ACC.

YES, agenesis of the corpus callosum IS a diagnosis. It is not often recognized in the schools here in the US because it is not as widely heard of as autism or cerebral palsy or another better known diagnosis.

ACC has such a broad range of how it may affect a person that there is no known prognosis for what to expect when someone is diagnosed. Some people with ACC have only mild learning disabilities and others are severely mentally and physically challenged with others being somewhere in between the two.

Some people with ACC have seizures. In fact, anyone who has ACC is at a higher risk to develop seizures because when you have ACC (a missing corpus callosum) you have a brain anomaly and there is a risk for seizures when a brain anomaly is involved. That does not mean that every person with ACC will have a seizure but it is something that a doctor should have told you.

ACC can also be seen with other medical conditions such as midline defects, chromosome anomalies, genetic syndromes and metabolic disorders. ACC can affect the optic nerve and cause other eye conditions. ACC can cause hearing impairment.

Some people who have ACC may have growth related problems and should be seen by a pediatric endocrinologist to be sure that all of their hormones are normal. Some kids with ACC need to be on growth hormones.

You are also not alone in that your daughter is a "hyperactive child" and some parents who have a child with ACC also have a diagnosis of ADHD.

I am SO sorry that you are not receiving support where you live within the school or from your doctor. I am also very sorry that your child's doctor(s) are not taking seriously the diagnosis of ACC and researching it better in an effort to help their patient and provide complete and accurate information to you as well.

Please feel free to e-mail me anytime.

Sandie *Mom to 15 year old Matthew with complete ACC in Oregon USA*

Jul 2, 2009 17:21:53 GMT -5 msp123 said:

she only has about 2 weeks left b4 the summer holidays so im hoping next term will be better the special needs co-ordinator is going to put a statement in to the education people to try and get her more help but said only about 3% of children get this .. her consultant is a doctor as far as i am aware he deals with all children with special needs in our area and even has a clinnic at the special school once a week that i wanted to get her into ill be monitoring the bullying and if it carrys on next term ill be making a official complaint

but i was reading back thru letters and i found one that one doctor wrote to our own general doctor that said this

Agenesis Of The Corpus Callosum is a Non-specific finding and doesnt really narrow down a diagnosis i have met the family and from a diagnosic point of view do not need to see the family again

but when i asked if it was complete or partial ACC he told me it was complete so can someone tell me if ACC is an actual diagnosis becuse it seems they are either looking for other things as well or he doesnt think that ACC is a problem but reading websites it is so its a little confusing for us

and yeah with us living in england we dont seem to be getting much support to me i dont think they know what they are doing i get angry sometimes coz i cant get the right help or speak to the right people that know about ACC and feel no one listens

[colinsmom]

MSP 123,
For some reason the post I thought I put in 10 min ago did not show up. This is all new to me..
ACC is a neurological disorder. When my son was diagnosed in Dec. 2008, the counselor from Boston Children's Hospital told me "you can now use the big guns to get what Colin needs from the schools, including legal representation". He had a diagnosis of a learning disability since he was 4 but this new one changed everything for him. It sounds as though the school does not want to deal with the real issue. 3% sounds very low. In our school system the 17% of the kids have special needs, 14% in the state of Massachusetts and between 11% and 12% nationwide.
It sounds as though you need some basic info. Info that starts out just explaining in plain english without all the medical jargon and I have tons of that if you'd like me to get it to you. (thru this site somehow??) Starting with this type of info will make you understand just the everyday issues at hand.
The diffference between full and partial ACC is not clear as far as I can tell. I've read different theories. Your daughter seems to be a highly functional ACCer as is my son. There is an active blog that we all use as well that has a pretty good following and there are a lot of successes that these people have accomplished as an ACCer. Kids finish college, adults who are employed, have families, have done tremendous things despite their ACC. When you are ready you should access it.
Barb, Mom to Colin, 16 years just diagnosed with ACC Dec. 2008.

[colinsmom]

Lauras,
Hi, The social aspect for the ACCers is a bigger issue for the parents than for the kids from what I can tell. No you shouldn't force her to go. It's ok if she doesn't go...my son is 16 and rarely gets invitations let alone just hanging out with friends like his older brother did day in and day out. I wish I could find a few buddies for him about 2 years younger...that would be perfect for him but that hasnt happend yet. Plus he is not athletic at all as his brother. None of this really bothers Colin. He's into theater and movies so we take him to as many shows as possible. Colin is now seeing a therapist to learn about social stuff plus whatever else he needs. The therapist is male, young and full of life. I feel good about that and Colin enjoys it. Hope he continues to like it.
Barb, Mom to Colin, 16 yrs. diagnosed in Dec. 2008.

[lauras]

Thank you to everyone who is posting. Update: We talked to the Youth Director at church and he was excited to see Bethanys name on the list for the trip.
We told him about Bethanys ACC and what they could do to help. We are so blessed. Our church family is so loving toward her. ANd the school system is very accomidating.
To parents new to this: DO YOUR HOMEWORK! learn about your rights as a parent of a child with special needs Be involved with your child education. In USA, the law is main streamed as much as possiable. Most schools have a zero tolerance for bullying. SO that helps
THis year was hard because 1-6th grade she was at a small country school. 100 students K-6th grade. This year she went to MIddle School. But I talked to School personel and they kept a watch on her. I also have a few "junior spies" her age. It really made a difference.

[matthewsmom]

lauras,

Thank you for the great update! I am SO happy for you and Bethany that you were able to work out a plan to attend the church function and that they are open to learn about ACC and willing to work on how to make things go smoothly for her. I hope that she has a wonderful time.

I couldn't agree with you more with respect to what you said about staying involved in your child's education. When my own child, Matthew, was attending public school I found that to be very necessary. I visited the classroom often, talked with the teachers often and knew what was going on, asked A LOT of questions, made sure that what was written in his IEP was being done, etc. In his 8th grade year I chose to remove him from public school and am homeschooling him now.

All my best wishes to you and Bethany for a fun time at the church event.

Sandie

Jul 3, 2009 16:50:22 GMT -5 lauras said:

Thank you to everyone who is posting. Update: We talked to the Youth Director at church and he was excited to see Bethanys name on the list for the trip.
We told him about Bethanys ACC and what they could do to help. We are so blessed. Our church family is so loving toward her. ANd the school system is very accomidating.
To parents new to this: DO YOUR HOMEWORK! learn about your rights as a parent of a child with special needs Be involved with your child education. In USA, the law is main streamed as much as possiable. Most schools have a zero tolerance for bullying. SO that helps
THis year was hard because 1-6th grade she was at a small country school. 100 students K-6th grade. This year she went to MIddle School. But I talked to School personel and they kept a watch on her. I also have a few "junior spies" her age. It really made a difference.

[msp123]

Thanks guys mathewsmom i went to that website where the book is about acc and i will order it at the end of the month .. as for the school theirs only 2 weeks left of the school year and then next term ill be monitoring the bullying and if it carries on then ill make an official complaint to the school ..

Collinsmom sound like we were diagnosed round the same time we found out in november 2008 her doctor never said any of that to me .. we never even got any info to come away with after he looked at her results he just told us and sent us on our merry way so as soon as i got home i went on the internet

I do think schools and doctors should be made more aware of ACC especialy over here in England as it doesnt seem to be recognised and theirs not much info but ill be making the consultant aware that i have been reasearching and speaking to other people with the condition im going to make him aware that im up for fighting for my daughter and not just going to be sent on my merry way every 6 months after seeing him and make him aware this is a real condition and not a non-specific finding that the other doctor said

[larkangel]

I am new on here & mom to 10 year old Larkyn with ACC. In reference to not knowing what to do about church camp, Larkyn is a social butterfly & meets people easily, never at a loss for words, she thinks everyone is supposed to just like her & take to her when they meet her. She loves going places but she doesn't like to really be that far from me, especially at night. No one can tell you how to handle your own situation because you know your daughter better than anyone, but I would never make her do something if she really didn't want to do it, even if I thought it would be good for her. I will pray for you... you are not alone, there have been many days that I have felt like crying or did... I think we all have good days and bad days.

In reference to the schools in England.. I was almost personally offended when I read your message. We lived in a very small town up until a few months ago where everyone knew everyone. She went to a private school & grew up with the same kids, so they all knew about her ACC & they never treated her any differently. She has always been mainstreamed in a normal classroom & in the 2nd grade she started being pulled out a few times a week to go to a tutor for her math. However, since getting older I felt she needed more, so in January we moved to a bigger town that has wonderful public schools. I have known since her birth that she had ACC so I had the advantage of trying to educate myself early. I can tell you what I did & maybe it will help you. Every time I found an article or anything pertaining to ACC I printed it, along with copies of her doctor's reports, & kept them in a folder. At the beginning of every school year I made sure that her teacher had this folder & asked that they do their best to read what they could to try to understand ACC & if they had any suggestions for me to please let me know.. I have always frequently communicated with her teachers throughout the school year. I don't know how schoools are there either, but I was upset that they don't seem to want to help or understand. Her new school has almost gone out of their way to try to help us get the accommodations that she needs. It is very important for me that Larkyn stay in the normal classroom setting as much as possible because she is so social, but she is pulled out to go to a smaller class in math or if & when she needs it in other classes. I have always talked to Larkyn about ACC & she has been able to say corpus callosum since she was 4 & point it out on a picture of the brain. It is very important that she know that she is different but that it is okay to be different because God made her that way. Larkyn knows that because of her ACC she has problems with math or anything with numbers for that matter, so she understands that she needs that special class to help her. If you have her medical records stating her diagnosis, they should not be able to refuse her the help she needs. If you ever want to e-mail me or have any questions, please contact me at any time at [e-mail].

Kim

[lauras]

I apologize if anything I said offended anyone. I assure you it was never my intension. I never meant to imply that any country or school system is better than the other.
My only purpose here is to share experiences and information with other parents.