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CENTER FOR PARENTS INFORMATION AND RESOURCES

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CENTER FOR PARENTS INFORMATION AND RESOURCES

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This website provides resources and information to parents whose child has been recently diagnosed with a disability.

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Has a child's disability recently touched your life? Are you visiting our website today looking for information about that disability? Would you like to find organizations and people that can help address the disability-related questions and concerns you may have?

We're very pleased you're here, because the CPIR has a great deal of information about disabilities to share. We hope this page will:

give you a quick roadmap to the disability world of help that's available in the United States; and

point you to disability resources on this website and beyond that may come in handy, now and as time goes by.

To speed you to information most relevant to you and your situation, we've divided the discussion below into two main parts. Click on the section that seems most relevant to your quest for information today, or just read straight through!

For Parents and Family Members

The Parent Center network is honored to welcome you to the disability community of those who are raising a child with disabilities. There is a lot of help, understanding, and assistance available, you'll be glad to know.

First, A Home Truth About Disability
There are many home truths about disability, but perhaps the most visible one is that "disability is a natural part of the human experience..."

We've quoted here from Congress. This was the first finding of Congress when it wrote the nation's special education law, the Individuals with Disabilities Education Act. You'll find many disability laws in the United States. They are all part of a national policy "to ensure equality of opportunity, full participation, independent living, and economic self-sufficiency for individuals with disabilities." Not surprisingly, there are many systems in place to address disabilities. These exist at the national, state, and local levels. We'll describe how to connect with these systems in a moment.

Other Home Truths
Given that disability is a natural part of the human experience, you may also appreciate several related home truths. These come from people who have disabilities or those who are involved with someone who does.

Your child is a person first, always.
Disability does not define your child's selfhood, any more than the color of his or her eyes does. Individuality grows from the rich soil of personality, experience, health, education, upbringing, and more. Know this for fact, and see it unfold in real time, as your child grows and matures. Having a disability is part of the mix, but so are your child's strengths, humor, talents, and interests.

Don't let the labels get you down.
We humans like to have a name for things-and that includes disabilities. We use terms like "learning disabilities" or "AD/HD" or "autism." These can seem like labels sometimes, limiting and impersonal. It's not uncommon for parents to resist having a label hung on their son or daughter. Some parents even resist accepting special help for their child because of labeling. Yet--labels are just terms used for a particular purpose. They're a convenient way of referring to something. And in the case of children with disabilities, schools are required to report the number of students they've helped according to specific categories. They have to use labels.

All this is to say: Try not to get too bugged by the label issue. Use the label when it's convenient or helpful, like when you're looking for information on your child's disability. Forget the label the rest of the time. Your child's the same person, either way. He or she hasn't changed one bit, label or no label.

Disability does not mean that your child cannot learn or be educated with peers without disabilities.
Parent Centers talk to many parents who've just learned that their child has a disability. Many wonder and worry that the disability means their child cannot learn or must now be educated in a separate classroom, away from friends and peers without disabilities. Not true. As you learn more about the special education system and how it works, you'll find that IDEA actually prefers students being educated together in the regular classroom.

Also, keep in mind that everyone learns differently. We all have our own personal style of learning, and so does your child. This includes our strengths and weaknesses, preferences and interests, talents and motivation. All of these factors go into how we, as individuals, learn and grow. Your child can learn, will learn. It's the job of special education to adapt instruction to fit your child's learning needs.

Learn as much as you can about your child's disability.
They say knowledge is power, and they're right. It's essential to learn more about your child's disability. How does the disability affect learning, movement, memory, behavior, and so on? What kind of special services help? What type of instruction is effective? These are the kinds of questions to ask. Share relevant information with the professionals working with your child. Also share your insights about your child's learning styles and preferences that only a parent can have.

You know your child best. Does what you're learning "fit" your knowledge of your son or daughter?
So you're reading scads of information about this disability. Keep in mind that not all of it may actually fit your child. He or she is unique, after all. Take the info that fits your child, sounds like your child, or might be helpful to your child, and use it. Leave the rest aside.

You're not alone.
Disability being part of the human experience, it's safe to say that many parents are where you are today, or have been where you are--searching for answers. It really helps sometimes to read what other parents have to say about raising a child with a disability. We recommend reading the short essay You Are Not Alone, written many years ago by parent Patty McGill Smith.

Finding the Information and Help You Need
OK, friend, let's get down to different business-connecting you with resources of help out there. In this section, we're not going to explain anything in detail (the page would never end!). We ARE going to suggest that you visit certain pages on this website. That's where you'll find things explained.

Here's a handy list of topics you can investigate. We've organized them in roughly the same order in which a parent might move forward, gathering information from the ground up. But feel free to jump around, if you'd like.

Each of the choices below will open in a new window, so this page stays open. That way, you can keep coming back to it and finding another corner to poke around in.
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What information are you looking for today? Re: Babies and toddlers, birth to the 3rd birthday:
The baby next door can do so many things that mine can't, and they're both 11 months old! Should I be concerned?
Read our Developmental Milestones page.

Where can I have my little one evaluated to see why she isn't....(sitting up, babbling, talking, walking...) yet?
Evaluations of babies and toddlers are conducted free of charge by the state, when there's a concern that the little one has a disability or a developmental delay. Find out where you can have your wee one evaluated by reading Services in Your State for Infants and Toddlers.

Tell me about the help available for babies and toddlers with disabilities.
We're pleased to! Read about early intervention.

Where do I find help in my state?
You'll want to get in touch with the Parent Training and Information (PTI) center that serves your State. Your State may also have a Community Parent Resource Center (CPRC) that, too, helps parents and family members to connect with vital information and needed assistance in their State and beyond. Visit Find Your Parent Center.

Are there parent groups I can join?
Yes, indeed. Many different kinds, in fact.
Read Parent Groups.

I don't even know what to ask! It's all too new.
Understood. The first steps into the disability world can be overwhelming. But go step by step. There's a lot to learn and know. We humbly suggest that you poke around this website, especially the Repository of Resources, and see what you find. We also strongly suggest that you visit the website of the PTI or CPRC that serves your State.
Re: School-aged children, ages 3-21 I want to read about my daughter's disability.Oh, we have just the place for you to start.

Head over to Categories of Disability and connect with fact sheets on disabilities.
My child is not doing well in school. What should I do?
Ask the school to evaluate your child under IDEA. The evaluation is free. Results are then used by you and the school: (a) to determine if your child has a disability that's affecting his or her schoolwork; (b) to determine whether your child needs special services in school (called special education); and (c) if so, to help you and the school plan what type of help and support your child will receive.
Please read Evaluating Children for Disability.

I don't know much about special education. Tell me the basics.
Sure, can do.
Read 10 Basic Steps in Special Education.

Are there parent groups I can join?
Yes, indeed. Many different kinds, in fact.
Read Parent Groups.

Who can help in my State?
The Parent Training Information (PTI) center and the Community Parent Resource Center (CPRC) in your State. Not all States have CPRCs, but all have at least one PTI. Connecting with your PTI or CPRC can plug you into who's-who and what's-what where you live.

What are my rights as a parent?
That's a great question. The answer is: You have many rights. Hustle over to the Parental Rights section and dive in.

I don't even know what to ask! It's all too new.
Understood. The first steps into the disability world can be overwhelming. But go step by step. There's a lot to learn and know. We humbly suggest that you poke around this website, especially the Repository of Resources, and see what you find. We also strongly suggest that you visit the website of the PTI or CPRC that serves your State.

We hope this brief introduction to the disability network has gotten you started in your search for information and connection. As your child grows and your experience evolves, your questions will change. The Parent Center network stands ready as an ongoing source of answers and connections.
As a parent new to the disability community, you may also find these last few resources on target: The Unplanned Journey: When You Learn Your Child Has a Disability
https://www.parentcenterhub.org/journey/
Parent Participation in Early Intervention (Children birth to the 3rd birthday)
https://www.parentcenterhub.org/parent-participation-ei/

Parent Participation in Special Education (Children 3-21)
https://www.parentcenterhub.org/participation/

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Has a child's disability recently touched your life? Are you visiting our website today looking for information about that disability? Would you like to find organizations and people that can help address the disability-related questions and concerns you may have? We're very pleased you're here, because the CPIR has a great deal of information about disabilities to share.

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SUPPORT FOR FAMILIES WITH CHILDREN WITH DISABILITIES

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SUPPORT FOR FAMILIES WITH CHILDREN WITH DISABILITIES

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This website offers information to parents with children with multiple disabilities.

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Ed Pye and Bob Harris had a 50 year marriage and created a The Pye Harris Legacy Project to do good work in the community: helping LGBT kids, children with disabilities, and environmental programs. The Pye Harris project is proud to help support the development of the website for Support for Families of Children with Disabilities.

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LEARNING DISABILITIES ASSOCIATION OF AMERICA

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LEARNING DISABILITIES ASSOCIATION OF AMERICA

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Resources for parents of students with learning disabilities.

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Parents or caregivers may notice academic problems or other signs of a learning disability in their child and not know where to start. Often this "invisible disability" does not become obvious until a child reaches school age. Even then, difficulties may be subtle and hard to recognize.

Here you will find a wealth of information on understanding learning disabilities, negotiating the special education process, and helping your child and yourself.

Featured Articles & Resources

Specific Learning Disabilities

Related Disorders

Support for Parents

ADD/ADHD

ADHD often begins in childhood and can persist into adulthood. It may contribute to low self-esteem, troubled relationships, and difficulty at school or work.
Symptoms include limited attention and hyperactivity.

Homework Handouts for Parents

Mental Health

Post Secondary Options

Pre-K thru High School

Professional Resources

Special Education Services

Teaching Reading

The LDA Podcast

Your Voice in Washington

Guides & Booklets

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Parents or caregivers may notice academic problems or other signs of a learning disability in their child and not know where to start. Often this "invisible disability" does not become obvious until a child reaches school age. Even then, difficulties may be subtle and hard to recognize.

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10 helpful special needs resources and organizations.

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When you're a parent searching for the perfect special needs resources for your family, there are a number of things to consider, including but not limited to, what you're hoping to get out of the organization. Are you looking to help your child make friends and become more social or are you hoping to connect with parents in situations similar to yours? Regardless of what boxes you're hoping to tick, one thing every special needs organization should have is strong parent involvement.

"Parent involvement in any organization is critical and that certainly goes for special needs groups," notes Dr. Brandon Smith, general academic pediatrics fellow in the Department of Pediatrics at Johns Hopkins in Baltimore. "Whether it's a national group, state group or local agency, it's important parents and caregivers are a part of the team since these are the people who know their kids and the needs of their family best." Smith also recommends researching and seeking out organizations that serve a diverse group, bringing together families from all backgrounds and regions.

"Another thing to consider is whether or not you're looking for a group dedicated only to your child's specific condition or disease, or if you want something more broad and available to all families and children with special healthcare needs," says Smith. If you're looking to get involved with the latter, there are many national organizations that can assist families of children with special needs, as well as ones that offer support to parents who have children with special needs. Here are some of the most notable.

1. Parent to Parent USA

Parent to Parent USA is a group that matches each parent with a fellow parent who has a child with the same special healthcare need, disability or mental health concern, allowing each parent or family to have a contact for sharing information, receiving support and creating new friendships. "Parent to Parent USA has local groups in almost all states, and is great for connecting families with each other for emotional support," notes Smith.

2. National Youth Leadership Network

Led by young citizens, the National Youth Leadership Network works to build strength and "break isolation" among people with disabilities who are between the ages of 16 and 28. They try to create a culture of full inclusion, sparking new ideas about how to measure success and ability and supporting youth with disabilities in leadership roles. The group hosts workshops around the country for young people to learn how to develop leadership skills.

3. National Collaborative on Workforce and Disability for Youth

NCWD/Youth focuses on young teens and helps them to learn how to cope with their disability and find their place in the workforce. The group also teaches kids to access the education they need. Once the young adults are able to achieve their educational and employment goals, NCWD/Youth works to assist them with living as independently as possible.

4. The M.O.R.G.A.N. Project

The M.O.R.G.A.N. Project stands for Making Opportunities Reality Granting Assistance Nationwide. This group, established by parents Robert and Kristen Malfara, supports families in their journey of raising a child with special needs, be that child biological, adopted or within the foster care system. In addition to having a large library of resources and information on their website, the group also assists families with travel expenses for medical treatments and gifts of medical equipment that aren't covered by insurance, such as wheelchairs. It works to create a group of parents who are supportive of each other in difficult times.

5. Federation for Children With Special Needs

Headquartered in Boston, the Federation for Children with Special Needs is a national organization that provides information, support and assistance to parents of children with disabilities, their professional partners and their communities. By allowing these families to more fully participate in community life, children with special needs are able to grow to their full potential. The Federation promotes the active and informed participation of parents of children with special needs in shaping and influencing public policies that affect their families. The peer support network the group provides allows for families to meet with those who can relate and understand.

6. Family Voices

Another resource Smith recommends is Family Voices, which, according to the Parenting Advocacy Network, "aims to achieve family-centered care" for all children with special needs. Family Voices provides families with the "tools to make informed decisions" about healthcare and education, build partnerships between families and their service providers and serve as a trusted resource on healthcare. They also help families learn to advocate for improved policies to best serve children with special needs. One of their main goals is to empower young people with disabilities so that they may become self-advocates for various causes that affect those with special needs.

7. Council for Exceptional Children

The Council for Exceptional Children is the largest international professional organization dedicated to improving the educational success of children with disabilities. By advocating for successful governmental policies, setting standards for professionals in the education industry, and providing professional development seminars, the organization helps teachers, administrators, parents, related students and other educational support staff to best support and educate the children with special needs with whom they work.

8. Disabled Sports USA

Everyone deserves to have a fun time playing sports, according to Disabled Sports USA. Founded by injured Vietnam War veterans, the organization has expanded to anyone with a permanent disability who wants to play sports but hasn't been able to in a standard setting. Using sports as rehabilitation, many children and young adults with special needs gain confidence and dignity through their teamwork and active exercise. Disabled Sports USA also works with the United States Olympic Committee to help choose athletes to compete in the Paralympics.

9. Best Buddies

" Best Buddies is a great organization for helping kids with special needs develop friendships and stay social," says Dr. Jen Trachtenberg, a board-certified pediatrician in New York City. Best Buddies works to end the "social, physical and economic isolation of the 200 million people with intellectual and developmental disabilities" by helping them form meaningful one-to-one friendships with peers. Through these relationships, Best Buddies works to help those with special needs improve their communication skills, secure jobs and develop the necessary skills to live independently.

10. Friendship Circle

Another resource Trachtenberg recommends is Friendship Circle, which also emphasizes the importance of friendship in the special needs community. Friendship Circle, which has locations throughout the country, pairs teen volunteers with a child with special needs in order to form "lasting friendships" and help teens reap the rewards of "selfless giving." Most programs take place either after school or on Sundays but include a number of sports, activities, social circles and trips for older kids.

Whether you have a child with special needs, you're looking to support a family who does or you're a caregiver for children with special needs, these organizations can aid you in your journey to understanding and advocacy.

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10 helpful special needs resources and organizations

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When you're a parent searching for the perfect special needs resources for your family, there are a number of things to consider, including but not limited to, what you're hoping to get out of the organization. Are you looking to help your child make friends and become more social or are you hoping to connect Read more...

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Amazing resource for parents who have deaf children or hearing loss.

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Hearing Loss Community - Hearing Like Me

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Welcome to HearingLikeMe.com. A hearing loss community brought to you by Phonak for better living, raising, supporting and learning.

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One of the best online resources for information on Autism.

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The Arc's Autism Now Center | Autism Resource for parents, teachers, employers and individuals | National initiative of The Arc

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Resource on autism for parents, teachers, employers and individuals. National initiative of The Arc.

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ROYAL INSTITUTE FOR DEAF AND BLIND CHILDREN

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ROYAL INSTITUTE FOR DEAF AND BLIND CHILDREN

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Information and services for parents of children who are deaf-blind.

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Royal Institute for Deaf & Blind Children

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Hearing

Wherever you are in Australia-and no matter what stage you're at in your hearing loss journey-we're here for you.
Find out more

Vision

We offer a holistic approach to care and support for children with vision impairment, across Australia.
Find out more

Coronavirus advice - update

Our service delivery may be different during this time, but it hasn't changed our commitment to redefining what's possible for people with hearing loss or vision impairment.

Find your nearest centre

We operate Australia-wide. Contact us to discuss how we can support you at your nearest RIDBC centre or through our remote service.

Meet the People We Support

We support thousands of adults, children and their families with hearing loss or vision impairment. Meet some of the people we support and find out how we have helped them to reach their goals.

Research and Professional Development

RIDBC Renwick Centre is Australia's leading centre for research and professional education in the field of education for children with sensory disabilities; designed to help professionals make a difference in the lives of children and their parents or carers.

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Home page - Royal Institute for Deaf & Blind Children

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Wherever you are in Australia-and no matter what stage you're at in your hearing loss journey-we're here for you. Find out more We offer a holistic approach to care and support for children with vision impairment, across Australia.

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Resource for any parent with a hearing-impaired child, that not only offers support and resources but it also includes; news, recommended reading, personal stories, and articles, it also has a section on laws and how your child with hearing loss has rights.

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Many people notice subtle signs of hearing loss long before they publicly acknowledge that they may have a problem. If you're concerned that you may not hear as well as you did in the past, you may blow off those small signs because you think that you're too young for hearing issues. You may simply not want to deal with the life-altering diagnosis of hearing loss. In addition, you may worry about what other people will think if you need a hearing aid or other forms of hearing loss treatment.

Regardless of the fear and uncertainty that you may feel when thinking about the potential of a hearing problem, it's important to visit an ear doctor so that you can determine what is happening with your hearing as soon as possible. The earlier your condition is diagnosed, the faster you can start benefiting from treatment. If you find out that your hearing is not impaired, you can spare yourself a lot of worry by finding that out sooner rather than later.

According to the Hearing Loss Association of America, nearly 50 million people in the United States have reported hearing loss. By the time you reach the age of 65, one-third of your peers are likely experiencing some difficulty with their hearing. Those numbers are likely much higher in reality, since many people don't report minor hearing loss. Some instead consult an injury lawyer due to the nature of the injuries sustained that led to the hearing loss. If you want to determine whether your signs of hearing impairment deserve a visit to the doctor, take an honest look at your experiences in daily life.
Turning the Volume Up
As hearing loss sets in, the volume creeps up on electronic devices. If your family members or housemates have to turn the volume on the television down in order to speak to you or they complain that you have it up so loud that they can hear it across the house, you have to consider the potential for hearing loss.

If you're experiencing minor hearing problems, you may simply notice that you need to turn your devices up louder than in years past. If your volume is going up steadily with time, then you may suffer from progressive hearing loss. The faster you intervene with a professional hearing test, the more likely you are to stop future impairment. You may also find that your hearing problems are caused by ear wax or fluid build-up, which you can prevent in the future.
Pay Attention to Social Signs
Many people with hearing loss find it difficult to participate in conversations with multiple people or in busy environments with a lot of background noise. The distractions are enough to magnify the impact of even minor hearing problems. Many people will withdraw from these situations or blame others for speaking too softly, but there are two signs that the problem is on your end:

* Other people continue to participate in the conversation without problem.
* This routinely happens to you in busy environments or multi-person conversations.

If you're still wondering if you have hearing problems, you can ask a few trusted friends the following questions:

* Do you have to repeat yourself often when talking to me?
* How often do you think I misunderstand the words that you're speaking?
* Do you talk louder when communicating with me than to other people?

How your friends interact with you may tell you whether a professional hearing test is necessary, but you can also analyze your experiences in the upcoming week or month. If you have to strain to hear someone talk over the table in a crowded restaurant or have trouble hearing a movie or live play at the theater, it's probably time to for a checkup.
Missing the Subtleties of Life
Even if you can hear well enough to follow conversations and function in a professional work environment, there's a chance that you're missing out on subtle sounds. You may wait for hours for the dryer to beep, realizing later that it beeped without your acknowledgement. When you go for a walk with a friend, you may get confused as they talk about the pretty chirps of birds that you can't hear.

While this level of hearing loss may not interfere substantially with your daily life, it can make a difference in your quality of life. It may also lead to embarrassment when you miss the ding of the elevator or other sounds designed to grab your attention.

It's important to note that other things can cause you to miss background noises. For instance, you may not hear birds chirping during your walk because you're focused on the conversation with your friend. You may not notice the elevator beep because you're distracted by the to-do list running in your head. What you should pay attention to are repetitive instances of missing subtle sounds, especially if there are no other explanations for those occurrences.
Compensating with Technology
Smartphones, computers, tablets, and smart watches are used in many ways today, but these devices may take higher priority in the life of someone suffering from hearing loss. If your teenager yells something to you across the house, you may ask them to send you a text message instead because you can't understand what they're saying when they're in a different room. If you struggle to hear clearly over the telephone, you may find text messaging or emailing more efficient and comfortable.

You never have to ask your conversation partner to repeat their words when you have a written copy. You don't have to worry about mixing up words that sound alike, leading to embarrassing misunderstandings. There are other reasons that you may prefer electronic or written communication, but this is something to consider if you're questioning your hearing ability.

Hearing aids are another possibility. Click here to learn more.
Are You Suffering Hearing Loss?
If even one of the above points rings a familiar bell, you should consider visiting your doctor for a hearing test. Your primary practitioner can perform a basic test, but you may want to visit an audiologist Denver for a more thorough screening. Remember, it's best to catch hearing loss while it's subtle because early intervention may prevent more substantial problems from developing in the future.

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Many people notice subtle signs of hearing loss long before they publicly acknowledge that they may have a problem. If you're concerned that you may not hear as well as you did in the past, you may blow off those small signs because you think that you're too young for hearing issues.

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Resourceful website for parents with children who have dyslexia, are ADHD, or have other learning disabilities.

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©Smart Kids with Learning Disabilities®, Inc., Westport, Connecticut, USA. All rights reserved. Smart Kids with Learning Disabilities® is a registered trademark of Smart Kids with Learning Disabilities, Inc. SmartKidswithLD.org is the website of Smart Kids with Learning Disabilities, Inc., a non-profit organization dedicated to providing support to parents of children with learning disabilities and/or attention deficit disorders.

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This is a website project with the mission to inform, educate, and help parents, teachers, and students with orthopedic impairments.

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During my classroom observations as a student teacher, I noticed that there were several students with orthopedic impairments. Furthermore, my mother is an elementary special education teacher. She frequently has students with orthopedic impairments. A comprehensive website will be a highly convenient and helpful resource for parents, students, and teachers.
-Thomas Rhodes

In March of 2012, I severely broke my leg in two places. During my six months of recovery, I faced daily challenges with my extremely limited mobility and the lack of accommodations made for handicapped individuals in public places. When I finally began attending class again, I was extremely overwhelmed with how difficult it was to get from class to class or even room to room and to navigate the buildings and sidewalks at UNC. This personal experience opened my eyes to the difficulties of those living with orthopedic impairments and has made me passionate to help others with impairments, especially in the school setting.
-Kay Cee Butcher

Growing up with a sister with both an intellectual disability and an orthopedic impairment, I have a very personal understanding of how difficult it can be for people with disabilities to access public spaces. My reason for choosing this topic is the hope that some of these challenges can be eliminated in our public schools by encouraging teachers to make accommodations that will help students with orthopedic impairments feel more comfortable in their classrooms.

-Meleah Faucette

Like several disabilities in this nation, people with orthopedic impairments face many challenges in public and specifically the school systems. Several school systems, including my high school lacked orthopedic impairment friendly facilities. The goal of this website is to stimulate knowledge and awareness of challenges that students with orthopedic impairments may face daily in their classrooms. We hope to help students and teachers with older facilities learn how to cope with inferior facilities.
-Jeremy Sanders

As an undergraduate at UNC-CH, I began to advocate social justice through equal access for all. I was appalled during my Sophomore year, when I found out that there are dormitories such as Grimes and school buildings without equal accessibility to all floors. As someone who is a proud tar heel I want for everyone to feel welcome on this campus! If we learn how to cope with these sort of impairments, we can create a more cohesive, trusting classroom culture!
-Brian Heim

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During my classroom observations as a student teacher, I noticed that there were several students with orthopedic impairments. Furthermore, my mother is an elementary special education teacher. She frequently has students with orthopedic impairments. A comprehensive website will be a highly convenient and helpful resource for parents, students, and teachers.

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One of the most prominent mental health websites within the U.S., Healthy Place, offers an interesting and informative blog entry detailing the long and difficult journey parents of mentally ill children travel.

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Mental Health Support, Resources & Information | HealthyPlace

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Learn more about mental health disorders and treatments from a trusted source. Find support in our online community of HealthyPlace forums and blogs.

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Reading Rockets is a national public media literacy initiative offering information and resources on how young kids learn to read, why so many struggle, and how caring adults can help.

THIS WEBSITE IS FULL OF STRATEGIES AND RESOURCES

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Explore reading basics as well as the key role of background knowledge and motivation in becoming a lifelong reader and learner. Watch our PBS Launching Young Readers series and try our self-paced Reading 101 course to deepen your understanding.

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This website provides parents who have a child with a traumatic brain injury with a guide.

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Helping Your Child Adjust

Introduction

Although no two children or their brain injuries are alike, many children struggle with similar emotions and challenges after TBI. These include:

denial that the injury will have a long-term impact,

grief over their loss of function and skill,

changes in how they relate to others,

rustration with the recovery process, and

limited awareness of the differences in themselves.

Your child's ability to cope with or develop strategies for dealing with these changes will vary depending on many factors. Some of these may include your child's previous coping skills, her intellect and personality, the support available from friends and family, her emotional health, the strength of her relationships, the stage of development she was in when injured, and the extent of the injury.

As a parent, you will play a key role in helping others understand your child. Thanks to your unique experience parenting your child, you will be able to provide professionals with valuable information and insight into your child's individual traits. During the rehabilitation process, parents' involvement and commitment are often seen as pivotal to their child's recovery and return to home and school.

To help you better help your child, this chapter will examine some of the changes that children with TBI commonly face during the acute, rehabilitation, and back-at-home phases of the recovery process. It will also offer suggestions for helping your child cope with and adjust to these changes.

Your Child During the Acute Phase

Once your child's condition is stabilizing and she is beginning to emerge from coma, you feel some reassurance. There is joy, relief, and hope but still uncertainty. You try not to be overjoyed, as the road ahead is still uncertain, but you experience some slight relief, a small lift of the burden. This was the small step, the sign that everyone has been waiting for. From this moment forward, your experience of parenting your child is changed forever.

In the acute phase, as you are trying to manage your emotional roller coaster, you find yourself asking, "What should I be doing for my child?" Below are some suggestions for supporting your child as she emerges from coma.

Emerging from Coma

Emerging from a coma is a frightening experience for a child. One child recalled the experience this way: "I remember being scared and wondering where I was. I remember there were doctors and nurses and I saw my mom sitting by the side of my bed." Each child's beginning steps of recovery are unique and marked by varying memories. The environment is unfamiliar and your child's memories leading up to the injury may be unclear and uncertain. Usually, there is no memory of the actual injury. Uncertainty and unfamiliarity mark the beginning of the road ahead that your child now faces in coping with the changes in herself.

When your child is emerging from coma, there will be times when she is not alert or responsive. Providing stimulation, support, voice, and touch can be helpful to your child. Even if your child is not responsive, providing this support can help you feel connected to your child. If possible, surround your child with familiar items, including pictures of family members and friends, mementos from home, and familiar music. Try to create a familiar environment within the unfamiliar hospital room. When you are ready, encourage close family members to visit your child. You and your family members should keep talking to your child, providing those familiar voices and reassuring words of love and support.

Your Child During the Rehabilitation Phase

The work begins. Your child may be faced with many physical, cognitive, and emotional challenges. As a parent, you are constantly observing and encouraging your child, hoping for changes, slight improvements that might ultimately lead to larger accomplishments. Your child may experience difficulty walking, managing personal care, expressing wants and needs, and remembering: things that she once did without any thought or effort. Now is the time in the recovery phase where the effort to regain previously mastered skills begins. Demands are placed and goals are set, as a variety of specialists begin challenging your child to reach her potential. Your child begins making small, slow steps toward larger accomplishments.

During the rehabilitation phase, your child may have difficulties with memory, self-awareness, and problem solving. She may have sudden changes in her emotions (emotional lability) or show no emotions at all (flat affect). She may also become easily frustrated, fatigued, and irritable, and have changes in her behavior and personality. These changes often lead to poor social behavior and interactions with others.

Confronted with Changes

Recovery is a gradual and challenging process with no clear endpoint. It varies depending on the injury and the child. As your child begins to slowly emerge and progress, deficits become more apparent. Your child may be discouraged by the slowness of progress and the ups and downs that come with recovery. Seemingly simple activities may now by difficult to perform. She may also be faced with accepting changes in her physical appearance. Often there are healing wounds that are difficult for a child to accept. Hair may have been shaved immediately following the injury. Your child may not be comfortable with changes in her appearance. Additionally, she may be frustrated by her new physical limitations. For instance, a once very active 14-year-old basketball player with artistic talents was very frustrated by the difficulties he experienced in walking, and in using his dominant hand to eat, care for personal needs, and draw as he used to.

Difficulties with Insight and Awareness

Sometimes children are not aware of other emerging differences aside from the physical differences. They may not agree that their academic performance, memory, language skills, behavior, personality, or social behavior have changed. Often children lack insight into their cognitive deficits, as it is easier to see, understand, and focus on rehabilitation of the physical differences. This can be particularly challenging for family members who are able to observe both the physical and cognitive difficulties their child is facing.

Developmental Stages

During the rehabilitation phase your child is working hard to regain a multitude of lost skills. Your child has experienced a tremendous amount of change in herself in a very short period of time. How your child views those changes will likely depend on her stage of development. For instance, an infant or toddler will have little understanding of her differences. Older children and adolescents have more capacity to understand these changes in self that can affect identity, self-perception, peer relations, previously mastered skills, and goals for the future.

Often children and adolescents experience grief, anger, a decrease in self-esteem, and depression, as the loss of skills and changes in personality, social behavior, academic performance, communication, language skills, and appearance become more apparent. During adolescence, children normally struggle with the formation of their identity and have often formulated negative attitudes toward those who are different, less capable, and less "cool." The discrepancy between an adolescent's former and current self can be problematic.

What You Can Do for Your Child during the Rehabilitation Phase

During this rehabilitation phase, your family will become central to recovery and the primary support for your child. You can provide professionals with specific information that can't be gleaned by testing, serving as a window into your child. You know your child best, and have the commitment to become her lifelong advocate. Below are some suggestions that will help you and other family members support your child.

Focus on Daily Successes

During the rehabilitation phase, your child may be discouraged by the slow process of recovery, experiencing periods of ups and downs. Help her to see recovery as a long process by focusing on the daily positives and progress already made. You can compare specific challenges to other times in life when accomplishing a goal took time and was challenging. For example, you might remind her of the time when she practiced her flute every day and took private lessons to prepare for her audition for the school orchestra. Praise your child for her accomplishments since the injury. Be supportive and encouraging while maintaining realistic goals. Try not to evoke additional frustration by focusing on the negative, putting extra pressure on your child to perform, or setting goals that she is not ready for.

It may be difficult to see your child struggle with physical needs as well as cognitive demands. You can help, however, by re-instilling confidence while she is relearning and regaining skills. When appropriate, encouraging her to be independent can help your child feel a sense of self-worth.

Your child's feelings and motivation may fluctuate as she faces numerous changes during the recovery period. Family members can help by providing consistency, support, and encouragement. Focus on the positive, and minimize critical feedback. Again, you know your child best--what motivates her, her personality, her previous coping style, and her level of acceptance. Communicate this knowledge to professionals who work with your child.

Your role in supporting your child in her daily coping may seem like a high-wire balancing act, but remember that your family is her primary source of support. It is well worth your efforts to do whatever it takes to help your child regain her participation in the outside world.

Managing Changes in Appearance

How much of an emotional impact your child's physical changes have on her will depend on her age and stage of development. Your child may not like the way she now appears to others and may therefore be uncomfortable with visits by friends and family members. Helping your child understand the importance of family and friends in her life may help to ease her discomfort. In the meantime, it is fine to respect her wishes and minimize the number of visitors until she feels more comfortable.

Help your child feel as comfortable as possible with her appearance. For example, allow her to wear a baseball cap or clothing that covers her injuries if it makes her feel more secure.

If your child feels comfortable discussing her differences (for example, hair, stitches, cuts, scars, braces/splints), encourage her to talk about them and how they affect how she perceives herself. Discuss how these physical changes also take time to heal. Hair grows back and some cuts and scars will fade over time. It may help your child to see photographs of herself before the injury and during the course of recovery so that together you can observe and realistically discuss changes.

If your child does not seem comfortable discussing her appearance, take her lead. Minimizing the attention placed on physical appearance may reduce the importance of this in your child's mind. Listen to your child if she wishes to talk about her appearance, but do not keep bringing up the topic if it seems to be a sore subject for her. Once again, you know your child best.

Understanding Cognitive Changes

It is often difficult for a child to conceptualize the magnitude of a brain injury and its effects on memory, problem-solving ability, language, and personality. With the assistance of professionals, you can help your child to understand all that the brain controls, while emphasizing the importance of, and length of time for, recovery. Tell your child that just like an injured arm or leg, the brain needs time to heal and to be exercised. Be sensitive to your child's reaction to these deficits and changes. Allow her to express thoughts and feelings associated with the anger and grief surrounding the loss of skills. Seek the assistance of professionals to help your child feel that it is OK to have such difficult feelings about deficits, the recovery process, and thoughts about the future.

Your injured child's lack of insight into her actions and behaviors and recently acquired limitations will present new challenges for your family. Where you may have once felt comfortable with your child out of your sight, you may now feel just the opposite. This can be particularly difficult with teens and children with active lifestyles. Again, you are balancing on the high wire. One of the greatest challenges is for you to re-instill a sense of responsibility in your child while providing what may now be a greater level of safety and supervision than ever before.

Without insight and awareness into the reasons for heightened supervision, your child may feel mistrusted. It's best to continually discuss this issue and help her achieve a sense of responsibility in other, possibly new and creative ways. For example, find things for your child to do around the home where she can feel a sense of responsibility within a safe environment. If it was previously your child's responsibility to mow the lawn, you might change her responsibility to the equally important chore of getting the mail.

To balance your child's desire to regain her previous autonomy and freedom around the neighborhood with the need to keep her safe, you may consider asking for help from trusted friends and neighbors. Talk to adults and responsible children in the neighborhood about your child's limitations and the importance of safety while she is recovering. Ask adult neighbors and friends' parents to help supervise and monitor the safety of your child's activities. Maintain open communication throughout the recovery process and continually focus on the length of the recovery process in working toward future progress.

The Peer Network

When a friend suffers a brain injury, peers often struggle with the same emotions that parents and family members experience, including guilt, fear, anger, sorrow, and concern. Your family will need to decide which peers need to know what and who will be the one to share this information with them.

While your child is beginning the recovery process, it is important to involve peers who are responsible and close to your child. Like your family, your child's friends are wondering if your child will ever be the same and need to learn to accept some of the obvious and more subtle differences. Peers need to be educated about brain injury and recovery . . . to relearn and readjust to your child, their friend.

When it is comfortable for your family, involve peers in the rehabilitation process. How much peers are involved may vary depending on your child's age and comfort level, as well as distance/accessibility of the rehab facility. Identify a handful of responsible and devoted friends whom you know and trust, and whom you can envision being your child's eyes and ears once she returns to school. Encourage peers to contact your child in the hospital through phone calls, letters, cards, and face-to-face visits when the time is appropriate. This will help friends to cope with the changes in your child and adjust to and understand her new needs. It will also help your child begin to accept the changes in herself. Educating and exposing peers along the way will help with the inevitable transition to home and school, and with the understanding of differences, limitations, and changes in personality and behavior. If supportive peers understand your child's needs, this will hopefully lead to a positive and accepting transition back into the community.

Changes in Self-Esteem

As your child becomes more involved in the rehabilitation phase, her self-esteem can suffer. The noticeable changes in herself and her skills, as well as differences in behavior, moods, cognition, and personality can challenge your child's self-esteem. For example, this is how one parent described the changes in her child:
"Before his injury, Tom was so positive and confident. He was always the first to try something and most things came easily for him, be it school work, sports, artistic endeavors. Since his injury, he no longer has the use of his right arm and hand and requires a cane to help with walking. It takes him longer to process information, and math, which was once easy, is now a chore. He is a different person now, ashamed of what his friends might think of him, frustrated that he can no longer do things the way he used to, and unwilling to try new things. You see, Tom wanted to be an electrical engineer and play basketball in high school and college. I know that when he thinks about his future now it scares him."
The evolution of such changes, coupled with the uncertainty of recovery, is extremely frustrating for a child with TBI and can cloud a previously favorable and confident self-perception.

As a parent, watching your child struggle with the emotional impact of the injury can be very painful and difficult. Often you have shared the same hopes and aspirations for your child. You may feel as if you want to take this struggle away, since your child already has so much to manage.

Again, encouraging and rewarding progress while remaining sensitive to the length of the recovery process will help your child feel supported and recognize her accomplishments. Be patient and communicate with your child. Help her to know that it is OK to talk about her feelings and experiences, and allow frustrations to be expressed. Never try to talk your child out of her feelings. Your child's feelings are what she feels-they are neither right or wrong. The losses that your child is experiencing are real and will inevitably be accompanied by a variety of emotional expressions and reactions. The support and strength provided by your family will help your child through all stages of the recovery process.

If your child seems to need more emotional support than your family can provide, do not hesitate to seek supportive therapy for her, as well as your family, from psychologists, social workers, or counselors experienced with traumatic brain injury.

Your Child Back at Home

After weeks, possibly months, of recovery in the hospital setting, your child is now ready to transfer her recovery process to the home and community. As a parent, you may feel both positive and negative emotions about this step. On the one hand, you know that your child has made progress and that there is hope for continued success once your child returns home. You will probably become more confident as time at home increases, experiencing some relief and hope. You will also probably welcome the longed-for semblance of normalcy in your life, with your family again reunited at home.

On the other hand, you may feel ambivalent, scared, and worried about how this transition home will play itself out. You know there may need to be physical changes made to your home as well as changes in roles and expectations. You have been part of the team process, working and training closely with professionals who have provided care for your child 24 hours a day. You have come to rely on the support of professionals, and now your family is expected to carry out this lifetime mission back at home.

With practice and experience, families can learn to adjust to the changes at home and continue to support their child. This section details some of the changes to expect.

Changes in Family Roles and Responsibilities

When your child returns home, many of the physical and cognitive difficulties that she experienced during the rehabilitation phase will continue, only now these issues will play themselves out in your family's everyday life experiences. You may find that the demands and challenges increase and that roles within the family shift. For example, younger siblings may take on more of a big brother or big sister role in the family, with greater responsibilities. Siblings may assist your injured child with her homework or daily care routines. Or they may take on chores and responsibilities for their recovering brother or sister.

I'm Home, I'm OK

Depending on the injury and level of recovery, children with TBI often feel that they have returned to pre-injury life once they are home. Now, more than ever, parents will struggle to balance their instincts to overprotect their child with the need to allow for some independence within the constraints of safety and supervision. Your child may not value or understand the need and importance of safety and close supervision, particularly if she is an older child or adolescent who has previously been granted some independence and freedom. Often when children return home, they feel that this is the permission they have been waiting for to resume previously enjoyed social activities. "I'm out of the hospital, so now I'm better and I can do what I want," they may think.

For children who do not show any physical signs of a traumatic brain injury, yet have cognitive challenges, restrictions on activities may be difficult to adjust to and understand. The reaction of this sixteen-year-old who was struck by a car while crossing the street is typical: "Since I've been home from the hospital, my mom won't let me out of her sight. She won't even let me ride my bike or go swimming unless she is watching me. She says she's worried that I may injure my brain again." It is difficult for children who previously had very active lifestyles and enjoyed such activities as football, soccer, roller-blading, skateboarding, or swimming to now see these activities as risky and potentially dangerous.

In short, although the return home is a positive and significant step in recovery, it often exposes your child to more restrictions and limitations than could be imagined while hospitalized. As your child re-enters her life at home and in school, the discrepancies between what she could do before and what she can do now become more evident.

Your Child's Losses

As your child adjusts to home, losses that were beginning to be apparent during the rehabilitation phase may intensify and become more real. In addition to the previously discussed cognitive and physical losses, additional losses may begin to surface once at home. These may include the loss of roles and responsibilities within the family, changes in friendships and social groups, and adaptations to goals and dreams for the future.

Once home, the emotions associated with loss will resurface throughout your child's and your family's life cycle, depending on the specific loss and how it affects your child and family at a specific point in time. For example, as your child reaches the age when milestones often occur - learning to drive, high school graduation, college acceptance - your child and family may feel a sense of loss if those milestones aren't reached on schedule.

Peer Involvement and Response

With the early and timely involvement of close friends, these friends will hopefully become an integral piece of your child's transition back to home and school. Many times, peers are able to cope with the changes in their friend and can provide the support and understanding that your child will need. Other times, friends can become less supportive, unsure how to respond to the numerous changes they see. Often the injured child's social behavior may be inappropriate or disruptive, or seem immature and even embarrassing to friends. They may think, "Before her injury she was quieter and liked to do different things. Now she is always embarrassing me with her comments and never invites me to do anything." It is often difficult for peers to understand that these changes in their friend are the result of the brain injury and that behaviors, emotions, personality, and moods may now be very different.

Returning to School

Preparing to return to school is yet another milestone in the recovery process that evokes a variety of emotions for children with TBI and their families. Again, there may be positive feelings about this transition, yet, it can be another time of ambivalence and concern. Depending on what kinds of extra help your child will need and what is specifically provided by the school, your child may be better served at a different school. (See Chapter 9 for a thorough discussion of these issues.)

Whether your child returns to her school or transfers to another school, there will be challenges to face. If your child now requires special education services, becoming involved with the special education system may be a new experience for your family. Children often perceive that there is a stigma attached to special education services that reinforces the permanence of differences in themselves, causing a change in identity. Whether or not your child needs special education services, she may be worried about changes in academic performance and about how peers may respond to physical and cognitive changes. On the other hand, your child may not have the insight into her differences, and may view herself as unchanged, believing that everything will be the same. Regardless of your child's level of insight and understanding into the complexity of such changes, educational services and supports need to be designed for her specific needs.

Social Behavior

As your child rejoins the community, social situations that once seemed natural and appropriate to your child's development may now present challenges. For example, your once outgoing, social child may now be quiet and withdrawn and appear confused at birthday parties. Or she may be disinhibited and impulsive, blurting out comments without thinking and engaging in risky behavior. Adolescents may struggle with peer interactions, requiring the re-teaching and rehearsing of social skills. Sometimes this can result in social isolation, and a growing distance between your child and her peers.

What You Can Do for Your Child at Home

As described above, returning home presents its own set of challenges for your family and your child. Over time your family will gradually adjust its life to address these changes. This section describes things you can do for your child to help with this transition back to the home and community.

Encouraging Family Communication

One of the most critical steps you can take to help your family weather your child's transition back home is to facilitate and encourage open dialogue between family members as to how these changes are affecting each individual. Important issues to discuss include:

Feelings about changes in household roles, routines, and responsibilities;

Siblings' feelings about your injured child's new behaviors and how they are managing at school and in the neighborhood;

Feelings your injured child has about her siblings being allowed to do things that she is not.

Consider holding regular family meetings to gather feedback from family members. Set a time during the week when all family members are expected to attend and discuss what is and is not working within the home. Ongoing open communication within your family will help to establish a foundation for solving problems, alleviating stress, and strengthening relationships within the family.

Setting Limits and Encouraging Other Activities

There are ways to provide safety and supervision for your child while enabling her to have some sense of control and responsibility. First, encourage activities to take place in your home or the home of a trusted adult so that supervision can be unobtrusively provided. Second, set limits with siblings, friends, and your child regarding activities that are safe and appropriate so that your child does not feel pressured or confused in social situations. Third, schedule time together as a family to explore and encourage new activities or interests that present less of a risk for re-injury. Fourth, continue to communicate openly with your child, allowing her to express her frustrations with restrictions. Lastly, educate and inform others as you learn new ways of keeping your child safe. The more people know about the importance of providing a safe environment for your child, the less likely your child is to be put in compromising social situations.

One mother of a sixteen-year-old sat down with her son and his friends and listed activities that Jimmy was allowed to participate in, activities that would require adult supervision, and activities that were completely off limits. This particular mother developed valuable relationships with friends and neighbors early on in her son's recovery process through educating and informing. Several months following her son's return home, she felt comfortable with a handful of trusted friends who understood the importance of safety and were willing to look after her son in social situations.

Managing Losses

Helping your child to manage losses can be a challenging and difficult task, especially when you are likely experiencing and managing your own losses. Establishing a strong support network of family, neighbors, friends, members of religious and community institutions, school personnel, and other professionals is critical. When comfortable, encourage your child to express herself to you and other people in her life.

As mentioned above, there are many times when support from outside professionals can be very helpful. It is worth getting outside help whenever your family does not seem to be coping well, and the neutral, objective perspective and support from a professional might help you over a hump. Additionally, you should seek professional assistance if your child is feeling very distressed, angry, overwhelmed, stressed out, frustrated, depressed, or isolated from peers. In these instances, it is likely that your child's emotional struggles are affecting the whole family.

One way to seek out professional help is to utilize school resources, including school social workers, guidance counselors, and psychologists. Your child may also benefit from counseling services provided by a professional who is experienced with traumatic brain injury. Additionally, family counseling or support groups may help all family members, as issues of loss and change cycle throughout one's life and will likely need to be revisited.

Memory Book

Many families use memory books as a tool to help their child understand what has happened to her from the point of injury through the recovery process. Often these books include:

photographs of the child taken at different points during recovery;

significant dates, times, and events during recovery; and

pictures and comments of professionals who have helped the child and family along the way.

By providing a chronology of the events that happened, the memory book can reinforce the seriousness of the injury to your child, let your child see that she is recovering, and help her integrate this trauma into her lifetime experiences. This tool can also be used to encourage conversation with your child and help in educating others.

Some families reserve a section of the memory book or make a separate memory book to help their child remember information needed for day-to-day life. For example, as an aid to remembering, they list names, dates, times, phone numbers, school schedules, and the steps needed to complete daily living tasks or routines within the classroom or home.

Managing Social Situations

As discussed above, children with TBI often experience social isolation as a result of changes in behavior, personality, mood, and awareness. This can be extremely difficult for your child if she has previously had solid peer relationships. If your child struggled with relationships before her injury, making and keeping friends will probably be even more challenging now. In addition, difficulties with insight, good judgment, and social awareness could place your child in vulnerable situations. For example, your child might be pressured to do something that could place her at risk for another injury. If she is feeling anxious to be liked and accepted by the group, she might take the risk.

Again, help your child by educating her friends and school personnel about recovering from, and long-term effects of, a brain injury. If your child's friends seem to be backing away from her, try offering them more information about your child's condition to help them understand the changes in her. It may help to talk to the parents of your child's friends to better understand the friends' perspectives.

Listen to your child's frustrations about social situations. With the assistance of professionals specializing in traumatic brain injury, you may need to re-teach and rehearse social skills with your child by role playing or by practicing responses to scenarios that your child may be confronted with. Encourage your child to initiate social activities and conversations with her friends, serving as a role model for appropriate behavior.

Returning to School

Returning to school can be a difficult yet positive experience for you and your child. It will be very important to establish close and frequent communication between your family and school personnel (social workers, guidance counselor, teacher). Communication is the key to better understanding and helping your child. Often a communication log or notebook that travels between home and school is the easiest way for the school and family to communicate and is helpful in tracking and planning for the needs of your child. Parents can ask questions about what is happening at school and write about progress and difficulties that their child is having related to school. Likewise, teachers can use the notebook to record what they observe, respond to questions, and have an ongoing dialog with parents.

Your child may feel anxious about returning to school or beginning a new school. Anxiety could be the result of insight into changes in herself, concerns with changes in academic performance or physical appearance, concerns about peer reactions and acceptance, or worries about being placed in special education or the amount of time missed from school.

It is natural and appropriate for your child to worry about returning to school, yet there are some ways to help to ease this process for your child. First, professionals who are experienced with traumatic brain injury can help by educating peers and school personnel before your child's first day at school. Professionals can educate staff and students through in-services to help others less familiar with brain injury to better understand your child. Second, your child should have access to a school professional, such as a social worker, guidance counselor, or nurse, who is available to discuss her concerns about returning to school. Third, as a parent, you can ask to meet with school personnel to discuss your child's educational needs at any time. In fact, you will probably find that advocating for your child will be critical to your own well-being. And finally, it may help for your child to be paired with a "buddy," a trusted and responsible peer who can look out for your child and help to guide her during the school day. Your child may be able to help choose this buddy. Ultimately, however, the buddy should be a responsible student with whom both your family and school are comfortable.

If your child is placed in special education, she may worry about the perceived stigma. Be available to talk with your child regarding the unfairness and unkindness of this stigma and help her to understand the purpose of special education services. In addition, make sure that school personnel are attuned to this issue and available for your child during the transition period. Maintaining frequent contact with your child's school prior to her return, at the time of re-entry, and throughout the school year will help you help your child adjust to the changes in herself and her school program.

Community Resources

Community resources can be vital in helping your family and child adjust to your new way of life. Become connected with support groups and organizations where you can share your experiences and learn from others. Become active in your local chapter of the National Brain Injury Association, groups and organizations involved with special needs, and the local educational system. Use the supports of church and community members in bringing understanding and awareness to others. Go online and get virtual support and real information from some of the Internet resources listed in the Resource Guide. Most importantly, establish connections with others who have shared similar experiences. This will open doors for extended emotional support while acquainting you with other families who have faced, problem-solved, and made it through varying phases along this lifelong process. See the Resource Guide at the back of this book for organizations that can help you get started in seeking support.

General Guidelines

Below is a collection of basic guidelines for helping your child adjust following a traumatic brain injury:

1. Encourage and praise progress.

2. Involve peers, school, and the community when the time is right for your family.

3. Listen to your child and provide support.

4. Serve as a role model for social behavior.

5. Encourage your child to have relationships with friends.

6. Explore finding a counselor experienced with traumatic brain injury for your child and the family.

7. Consider family counseling to address role changes, sibling issues, understanding of differences, and the impact of this trauma on the family life cycle and development.

8. Encourage your child to focus on one day at a time by setting small goals as steps toward accomplishing larger ones.

9. Encourage independence with supervision. Be creative with this!

10. Seek the support and services of community members (professionals, church members, support groups).

11. Communicate! (with your child, family members, neighbors, friends, professionals, and the school).

12. Help your child understand her injury and recovery. (Let her know that the brain needs time to heal like other body parts.)

13. Instill confidence in creative ways--draw on previous skills and interests, applied in new ways.

14. Create a Memory Book. (Memory difficulties are often frustrating. This will also help to document events and reinforce progress.)

15. Encourage a normal lifestyle, predictability, and routine as much as possible.

Above all, remember that this is challenging and a lifelong process!

Parent Statements

I prayed to the good Lord to bring her back to me. He didn't say how she would be. Now I've got to deal with what I've got.

We've got this huge modified, accessible bathroom and a tiny laundry room. The bathroom is like the part of my life devoted to my child's needs and the rest of my life is like the laundry room - squeezed into a very small space.

Joe has done some things that have my heart floating - like walking to our neighbor's house independently!

Tommy's friends were really supportive when he went back to school after his bicycle accident, but now they seem to have moved on. He can't understand why they don't want to spend time with him anymore.

Sometimes I wish she could just see her problems so she would accept the fact that she needs help, but most of the time I'm glad she doesn't see.

The social worker has been the constant, predictable factor in a situation where nothing is predictable. When I'm in her office, I can pause and think and be myself.

He is doing really well now. When other kids ask him why he walks that way or why he can't use his right arm, he tells them "Somebody very bad hurt me once, but he is in jail now." Then he says, "Let's play." Because he handles it so calmly, other kids handle it well too. Sometimes he still is upset or confused about it, so we talk and practice ways he can respond to other kids' questions. He really is a terrific kid and everybody loves him.

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Children with Traumatic Brain Injury: A Parents' Guide | BrainLine

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Although no two children or their brain injuries are alike, many children struggle with similar emotions and challenges after TBI. These include: denial that the injury will have a long-term impact, grief over their loss of function and skill, changes in how they relate to others, rustration with the recovery process, and limited awareness of the differences in themselves.

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Five Things New Parents of Down Syndrome Children Need to HeaR. This website has many articles and stories of parents with children with down syndrome.

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The day I was told that my unborn son had Down syndrome was the day my entire world changed. In some ways, it was shattered. Everything I thought I knew about what I could expect from my life, my ideas about the kind of mother I was and could be, the hopes and dreams I had for my children...with one phone call, they were all erased. I was a mess, crying on the phone to my mom and my best friend, trying to understand why this had happened, or how, and what I was supposed to do now.

I found out about Wyatt's extra chromosome when I was about 15 weeks pregnant. I never considered aborting my son. And knowing before he was born gave me the blessing of time: time to accept his diagnosis, to prepare myself for it, and to learn everything I needed to know.

I look back on those weeks after receiving that earth-shattering phone call and feel such a mix of different emotions. I didn't know then that while my world may have been shattered, it was rebuilt again to be so much bigger, and stronger, and better. It's as if, before knowing about Wyatt, my world was small and narrow and closed. Now, it's bright and open and endless, and I wish I could go back and tell myself what it was going to be like.

With the rise of more and more advanced prenatal testing, fears about abortion rates of babies with Down syndrome rising have become louder and louder. Everyone seems to want to blame the testing, when the reality is that it is our attitudes that need to change. Whether a mother finds out prenatally or at birth, the diagnosis is overwhelmingly given as a negative, with worst-case scenarios, grim views of what to expect of her child's life, and outdated, stereotypical medical information. Medical advances for people with Down syndrome have made their life expectancy rates soar, and the opportunities they have are almost endless.

But parents aren't told that. They're given the doom-and-gloom, and we wonder why so many are afraid that their lives will be ruined if they keep their baby. Many women who receive a prenatal diagnosis are given immense pressure to have an abortion. If we want to know whom or what to blame for the high abortion rate of babies with Down syndrome, all we need to do is look in the mirror (and this is especially true for many of the doctors out there).

A new parent of a baby with Down syndrome is going to be scared, confused, worried, and grieving. The last thing he or she needs is to have someone falsely reinforcing those fears and worries. So whether you're a doctor or someone whose friend just received a diagnosis, these are the things that this new parent needs to hear.
Click here to sign up for pro-life news alerts from LifeNews.com 1. You will be happy again.
I know right now this seems like the end of the world. And there will be challenges along the way (just like with any child). But the good news is, almost all families who have a member with Down syndrome report being happier and more positive than they were without him or her. People with Down syndrome themselves are overwhelmingly happy with themselves, their lives, and how they look. It doesn't feel like it, but you will be happy again.
2. They're still just babies.
I was so scared and confused when I found out that Wyatt had Down syndrome. I had never even met someone with Down syndrome - how the heck was I supposed to raise a baby with it? But the good news is that having a baby with Down syndrome is nearly identical to having a baby without it. Having a baby with Down syndrome means that you'll have lots of sleepless nights, crying, poopy diapers, and maybe the occasional spit-up. You'll also have snuggles, cute little gummy smiles, and that great feeling when they hold your hand. Down syndrome doesn't mean you've somehow given birth to a three-headed space alien which needs some kind of insane level of care. He's still just a baby. Feed him, love him, and snuggle him. That's all you have to do. And that's not that difficult, is it?
3. You can still do regular things.
Not long after I had given birth to Wyatt, I remember seeing somewhere a woman saying she could never have a baby with Down syndrome, because she wanted to be able to do things like go to the beach, and take her kids to Disney World. Huh? I don't know what misconceptions of Down syndrome would lead someone to think they'll suddenly be house-ridden, but you can still do regular things with your family. You can go to the beach, or to theme parks, or anything else you decide you want to do. We take Wyatt everywhere - to the aquarium, out to eat, to the beach. Babies with Down syndrome are just babies, and when they become kids, they're still just kids. They'll love seeing Mickey Mouse at Disney World as much as any other kid will, and they'll love making a mess at the beach, too. You won't suddenly become limited because your kid has an extra chromosome.
4. There will be virtually no limits to what they can accomplish.
When you picture an adult with Down syndrome, it's easy to imagine someone working in a grocery store, living with his parents forever, and never having any kind of meaningful life. But people with Down syndrome today can do almost anything. There's a man named Tim Harris in New Mexico who has Down syndrome - he graduated from college and now owns his own restaurant. A teenager with Down syndrome was recently inducted into his high school's National Honor Society. Karen Gaffney is an adult with Down syndrome, and a swimmer who has swum the English Channel, across Lake Tahoe, the Boston Harbor, and the San Francisco Bay. She also completed the Escape from Alcatraz triathlon. Another teenager with Down syndrome has climbed Mount Everest. There are also children with Down syndrome being featured as models (for companies like Target and Care.com), and adults who are actors (the most notable example being Lauren Potter, who stars on Glee). It may seem hopeless, but there will be no limits to what your child with Down syndrome can accomplish.
CLICK LIKE IF YOU'RE PRO-LIFE! 5. They will be loved.
It may seem obvious, because of course you're going to love him - he's your baby, after all. But what may surprise you is how many other people will love him, too. And he will change so many people's lives. Wyatt is loved by just about everyone who meets him - probably because he is the biggest people person I've ever met, and has a big smile for anyone who smiles at him. Your child will be changing perceptions every day, winning over people's hearts, and finding love everywhere he goes. Of course you'll love him, because he's your child. But he's going to be loved by everyone else he meets, too.
LifeNews Note: Cassy Fiano is a twenty-something Florida native now living in Jacksonville, North Carolina who writes at a number of conservative web sites. She got her start in journalism at the Florida Times-Union. She is the mother of two sons, one of whom was diagnosed with Down Syndrome.

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Five Things New Parents of Down Syndrome Children Need to Hear

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The day I was told that my unborn son had Down syndrome was the day my entire world changed. In some ways, it was shattered. Everything I thought I knew about what I could expect from my life, my ideas about the kind of mother I was and could be, the hopes and dreams I had for my children...with one phone call, they were all erased.