Newly Diagnosed

This section was written by parents of children with Disorders of the Corpus Callosum (DCC). We would like to begin by welcoming you to the world of special needs and commend you for your courage to pursue information about DCC for your loved one or, if you are the individual with a DCC, for yourself. A diagnosis is usually made by MRI or CT scan. Reactions to such a diagnosis may vary, depending on the age/stage of the person diagnosed. In this section you will find information for:

We hope to provide you with some of the first steps you will need to take upon diagnosis.

For Parents of Children Diagnosed During Pregnancy, Infancy or Early Childhood

A confusing jumble of emotions occurs at the time of diagnosis — shock, denial, anger, and sadness, to name just a few. Be sure to allow yourself to fully feel these emotions as they are a normal and necessary part of the process. In talking with hundreds of other parents of children with DCC, an almost universal thread of advice seems to come up: Make certain, despite your child’s countless doctor appointments and the incredible level of stress you may feel, to take care of yourself. Having a child with a disability takes a toll on marriages and on other family relationships. Do not hesitate to seek counseling to help you deal with your situation; you are starting an entirely new chapter of your life, and it is a journey that is made easier with the help of other people. Try to make time for yourself – even if it is nothing more than a walk, a long bath, or a chat with friends – each day. For many parents of special needs children, reading the following poem, Welcome to Holland, has been an eye-opening and helpful experience. We think you may find it helpful as you begin your journey.

Welcome to Holland, by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared the unique experience to understand it, to imagine how it would feel. It’s like this:

When you are going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. Michelangelo’s “David.” The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes and says, “Welcome to Holland.”

“Holland?” you say. “What do you mean, Holland? I signed up for Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plans. They’ve landed in Holland, and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guidebooks. You must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place.

It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there awhile and you catch your breath, you look around and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Medical Considerations

Most children with DCC see several specialists. Some of the doctors and professionals you may see include: Neurologists, Endocrinologists, Geneticists, Gastrointestinal Specialists, Orthopedic Specialists, Ophthalmologists, Optometrist/Vision Therapist, Speech-Language Therapists, Occupational Therapists, Physical Therapists, Developmental Therapists, Early Intervention Specialists, Behavior Interventionists, and Social Workers. With so many specialists, it is crucial to find a pediatrician who will oversee your child’s total care. A regular pediatrician or developmental pediatrician is ideal for this purpose. The various specialists your child sees will not necessarily communicate with one another, and the result can be a sense of isolation and confusion as you try to piece together information. It is important to find one general doctor who sees the big picture.

Parents of children with DCC have frequently indicated that it is extremely helpful to keep a single, chronological file of their child’s medical history. You will be asked to provide medical information throughout your child’s growing years. It will save you hours of headaches if you create a timeline of your child’s medical history. Include doctor’s names, addresses, phone numbers, appointments, findings, interventions, surgeries, and medications (including changes and reasons for changing, dosages, and side effects noted). Many people think, “We’ll never forget what Dr. So-and-So said ” — but as your pool of information grows, you will and it’s much easier to fill out forms and answer questions if you have all the information in one place instead of digging through old files. There are many ways to keep and organize the information you will receive from the various specialists. A binder system may work for some. Scanning important paperwork and saving it on a flash drive makes it transportable and accessible anywhere. Likewise, there are some apps that allow you to organize medical information. Choose the system that works best for you.

As part of the medical records you are starting to accumulate, it is crucial that you obtain a hard copy of your child’s MRI or CT scan for your own records. This is a lot easier to do at the time of diagnosis than years down the road, as some medical facilities tend to destroy records/films after a period of time. You have the right to have them in your possession, so please request a copy of them. There may be a fee for these, but it is well worth it to have them in your files.

Be prepared for “wait and see” advice from doctors. This is one of the most frustrating parts of having a young child with a DCC: you don’t know how much the condition will affect your child. The best way to counteract that frustration is to do very active record-keeping. This is the time to set up the timelines described above. This is the time to take videos of your child (you’ll be surprised at how much your child does change, even though it seems like no changes have occurred) and keep a journal documenting milestones, issues, medication regiment, and the impact of medications and therapies. This is also the time to sit back and enjoy your child’s precious babyhood.

Developmental and Educational Interventions

Contact “Child Find” or PACT for birth to 3 and/or Early Intervention Services (or private clinics) in your area through your local school district to be identified for services as your child grows. Your pediatrician should be able to put you in contact with local service providers. Some of the services you may receive include PT (Physical Therapy), OT (Occupational Therapy) & SPI (Speech Therapy). Early intervention resources can be found at the National Early Childhood TA Center website. Contact the Department of Developmental Disabilities in your area for information about respite and/or rehabilitation care services for your child. Typically, you need to schedule an appointment for the intake meeting that determines qualifying for services.

There is sometimes a desire on the part of parents to do without early intervention. Parents may feel that treating their child the same way they would treat a completely typical child will help the child appear more “normal” and prevent him from using his disability as an excuse as he gets older. This is an understandable wish on the part of any parent, but for a child with DCC, the early years present a crucial window for developing new neural pathways in the brain. In an early intervention program, a child with DCC will receive more intense, repetitive practice at skills than he would receive from a regular education. We cannot emphasize strongly enough the importance of starting early intervention as soon after diagnosis as possible.

Keep a journal or timeline of developmental information, similar to the recommended timeline for medical information. You will frequently be asked about your child’s development at various stages. A chronological list of your child’s developmental milestones and behaviors will enable you to provide needed information to doctors, therapists and school professionals.

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For Parents of School-aged Children

If your child is diagnosed during the school years, you may have already noticed signs that something was wrong. Perhaps your child was developmentally delayed in areas of physical abilities, speech, or social skills and the diagnosis opens a window for answers to questions you have had. It may even be a relief to know that there is something actually causing the problems you have noticed. With the new diagnosis, you will need to educate yourself on the type of DCC your child has to be able to best help him or her navigate the world.

Medical Considerations

Parents of children with DCC have frequently indicated that it is extremely helpful to keep a single, chronological file of their child’s medical history. You will be asked to provide medical information throughout your child’s growing years. It will save you hours of headaches if you create a timeline of your child’s medical history. Include doctor’s names, addresses, phone numbers, appointments, findings, interventions, surgeries, and medications (including changes and reasons for changing, dosages, and side effects noted). Many people think, “We’ll never forget what Dr. So-and-So said ” — but as your pool of information grows, you will and it’s much easier to fill out forms and answer questions if you have all the information in one place instead of digging through old files. There are many ways to keep and organize the information you will receive from the various specialists. A binder system may work for some. Scanning important paperwork and saving it on a flash drive makes it transportable and accessible anywhere. Likewise, there are some apps that allow you to organize medical information. Choose the system that works best for you.

Keep a journal or timeline of developmental information, similar to the recommended timeline for medical information. You will frequently be asked about your child’s development at various stages. A chronological list of your child’s developmental milestones and behaviors will enable you to provide needed information to doctors, therapists and school professionals.

Educational Considerations

Keep in close contact with your school’s special education team, even if your child has no problems at the moment. In children with DCC who are very high-functioning, school problems sometimes don’t surface until 4th or 5th grade. Learn about the IEP process and keep in touch with your school case manager. This will keep your child within the case manager’s radar for potential problems. Most children with a DCC have speech/language concerns at some point, either with actual speech or with social language issues. There should be at least one professional—besides the classroom teacher—who is monitoring your child’s progress.

As you learn more about DCC, you may wish to educate your child’s teachers and professionals about the condition. You will find that many professionals have never heard of DCC. In addition, some parents have found it helpful to present age-appropriate information about DCC to a child’s classmates. The 2006 NODCC conference included a presentation on the topic of educating teachers and classmates about DCC. Click here for a handout or access to the audio_mp3 of this presentation.

Record keeping: It is very important to keep school records in chronological order. Keep a copy of all IEPs and notes taken at school meetings. As time goes on and papers accumulate, the most important IEPs to keep are the current year’s along with each three-year re-evaluation. At some point in a child with DCC’s elementary years, families are encouraged to arrange for a neuropsychological assessment of their child (this is different than the psychological evaluation done through the school). This type of testing can be arranged through a neuropsychology clinic, hospital or neurology department, and it can provide valuable information about how your child’s brain processes information. The findings of the evaluation will provide direction for your child’s education, and it can also serve as a baseline for evaluating your child in future years.

Children with DCC often have challenges navigating the social world as they grow up. It is helpful to talk openly and directly with your child about social rules and interactions. Children with DCC usually do not just “get” such rules by observing them; they need direct help, instruction, and practice. The expression, “I shouldn’t have to tell you that,” does not apply to many children with DCC. They do need to be told. If you gently but firmly tell your child how to act in various situations – with regard to hygiene, conversation, physical closeness, knowing when to stop talking – you will be giving your child tools that will help throughout life.

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For Adults with DCC

If you are newly diagnosed, learning about disorders of the Corpus Callosum will probably answer many questions you have about why certain things may have been difficult for you while growing up. You may go through phases of different emotions upon learning that there is something structurally different in your brain, but you might also experience a feeling of relief in identifying what that problem is. Please realize how valuable your experiences and information will be to parents of young children with DCC. If you become a member of the NODCC Community you will not only find some answers to your own questions, but you will also have an amazing opportunity to provide parents with information on pitfalls to avoid, things you found helpful and things you wished people had known about you.

Start your own file of your medical and educational history with as many reports as you can find. Also, obtain a hard copy of your MRI or CT scan which shows the DCC. You have a right to have a copy in your possession. There may be a fee for these, but it will be well worth it to have it in your files.

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