When your child has been diagnosed with intellectual disability (ID), or you think your child may have ID, and you feel like you have no support system, it can feel lonely and overwhelming at times. If you’re new to parenting a child with ID, or new to being a single parent or to parenting without a strong support system, you’re probably apprehensive about doing this all on your own.
It’s normal to feel many different emotions, including grief, anger, and frustration – especially if you don’t have a strong support system, but, with the right resources, your child can get what they need to live up to their potential, and you can build your own support system. When you’re strong enough to reach out for help, you and your child can both live happier, healthier, and more fulfilled lives.
In this blog post, we’ve collected five of the best resources available in Virginia for families of children with ID. We hope that we’re able to answer your questions and get you in contact with the help you’re looking for.
What is Intellectual Disability (ID)?
The Diagnostic and Statistical Manual of Mental Disorders (DSM-5) defines intellectual disability, also known as intellectual developmental disorder, as characterized by meeting three criteria:
- Significant deficits in intellectual functioning
- Significant deficits in adaptive behavior, including conceptual, social and practical skills
- These deficits begin in childhood
What Are the Signs of Intellectual Disability?
There are a few common signs of ID in a child, which may include:
- Sitting up, crawling, or walking later than other children
- Learning to talk later, or having trouble talking
- Not understanding social rules or how to socialize with others
- Not understanding the consequences of their actions
- Struggling to solve everyday problems
- Struggling to think about things logically
- Having trouble remembering things
What Causes an Intellectual Disability?
ID can be caused by a problem – like an injury, disease, or issues with brain development – that occurs any time before a child turns 18 years old. This can include issues that happen during the mother’s pregnancy. The most common known causes of ID – Down syndrome, fragile X syndrome, fetal alcohol syndrome, birth defects, and certain types of infections – all happen before birth, but problems can also occur during birth or shortly after. Other causes of ID, like a serious head injury, stroke or certain infections, may not occur until later in childhood.
What Should I Do If I Think My Child Has an Intellectual Disability?
If your child shows any of the above signs, or if you think your child may have an ID, but you haven’t gotten a diagnosis yet, talk to your child’s doctor. They can refer you to a developmental pediatrician or another specialist who can diagnose ID. You should also contact your local early intervention center (if your child is younger than three years old) or local public elementary school (if your child is 3 or older) for an evaluation. Early intervention is key! When it comes to giving your child their best shot at living a full and happy life, earlier is better. Continue reading to find out more about early intervention, and how to access your local early intervention program.
What if I Suspect My Older Child or Teen Has an Intellectual Disability?
If your child is a bit older or an adolescent, and you suspect they may have ID, other developmental delays, ADHD, dyslexia or other learning problems, or emotional or behavioral concerns, you can reach out to the Child Development Services program at the Virginia Department of Health for help. They can diagnose any conditions and assist you with care planning, follow-up care coordination, and referrals.
The location nearest Suffolk that provides services for this program is the Children’s Specialty Group Child Development Center in Norfolk, located in the Children’s Hospitals of the King’s Daughters. You can contact them at 757-668-7473 to set up an appointment.
You can find other locations in Virginia by clicking here.
Parenting a Child with an Intellectual Disability
Parenting isn’t always easy, but it can be especially challenging for parents of children with ID or other developmental disorders. Multiple studies have found that, compared to the rest of the population, the rates of psychological distress among parents of children with ID are higher, and mothers of children with ID are two to three times more likely than mothers of typically developing children to report clinically significant levels of stress, anxiety, and depression. There is also a marginally increased risk for families of children with ID of marital disruption and family dysfunction, such as relationship conflict, divorce or separation, emotional withdrawal and child maltreatment.
Resources for Parents of Children with Intellectual Disability
When a parent of a child with ID is a single parent, or otherwise lacks a strong support system, these challenges increase exponentially, as do the rates of mental health conditions. However, there is hope. There are plenty of resources intended to help parents of children with ID, including the following:
1. Early Intervention
Early intervention programs are designed to help children under 3 years of age who are experiencing developmental delays. Early intervention is a crucial resource when it comes to helping your child to live up to their fullest potential! The earlier you address developmental concerns, the higher level of success you will have in remediating them. These programs are mandated by the Individuals with Disabilities Education Act (IDEA) to be available in every state and territory of the United States.
In early intervention, staff will work with you to create an Individualized Family Services Plan (IFSP), which will help you all to ascertain your child’s unique needs and strengths, and which services they will receive to address their needs. The IFSP also addresses the family’s unique situation and teaches family members how to best help the child to learn, grow, and adapt.
Early intervention helps infants and toddlers to learn the skills that they would typically develop in early childhood and may be struggling with, like:
- Physical skills – like crawling, walking, reaching for things, rolling, etc.
- Cognitive skills – like thinking, learning and solving problems
- Communication skills – like talking, listening and understanding
- Social/emotional skills – like playing and feeling happy and secure
- Self-help skills – like eating and dressing
What Happens in Early Intervention?
Early intervention services are customized to meet each child’s unique needs, so they differ from family to family, but they may include:
- Assistive technology – access to any assistive devices a child might need
- Audiology services – help with any hearing problems
- Speech and language services – help with improving verbal & nonverbal communication skills
- Family support services – designed to help families as they learn about their child’s delays, learn how to care for their child with a disability or how to handle having a child with a disability
- Occupational therapy – to strengthen fine motor skills used to do everyday activities like tying shoes, writing, using scissors, and using utensils.
- Physical therapy – improves muscle strength and tone, balance, coordination, and movement skills, and teaches children how to care for themselves and to perform the physical activities of daily life
- Psychological services – to address any mental health concerns your child may show symptoms of
- Medical, nursing, and nutrition services, if needed
Cost of Early Intervention
The policies and regulations of early intervention programs vary from state to state. In Virginia, the early intervention system for infants and toddlers (under 3 years of age) is called the Infant & Toddler Connection of Virginia. Any infant or toddler in Virginia who is experiencing developmental delays or who has a medical condition that can delay typical development is eligible to receive early intervention supports and services. Although some services may be charged on a sliding scale based on the family’s ability to pay, many services are free of charge. Early intervention is available to all eligible children and their families, regardless of a family’s ability to pay.
Contact Information for the Virginia Early Intervention Program
If you live in Suffolk, Franklin, or the counties of Isle of Wight or Southampton, your local access to early intervention is the Infant & Toddler Connection of Western Tidewater. You can call 757-562-6806 for more information.
If you live in another area of Virginia, you can find your local point-of-access by clicking here.
If you live in another state, you can find a list of each state’s early intervention programs and more information on the CDC’s website.
Your Local Public School Can Help With Intellectual Disability
If your child is 3 or older, they will not be eligible for early intervention. Instead, your local school’s special education program can help. You can contact Suffolk Public schools at 757-925-6750.
If you don’t live in Suffolk, reach out to your local public elementary school, even if your child doesn’t go there.
2. The Arc of Virginia
The Arc is the largest national community-based organization advocating for and serving people with intellectual and developmental disabilities and their families. Their goal is to help children and adults living with developmental disabilities and their families to achieve their potential and goals in life. The Arc offers individual and family resources, support and guidance, and peer-to-peer support to empower, educate, and connect families through the early intervention program and beyond.
Contact Information for The Arc of Virginia
There are several local chapters of The Arc in Virginia. The nearest location is in Hampton. For more information, contact Dianne Fennell at (757) 896-8457 or email@example.com.
3. Family to Family Network of Virginia
The Family to Family Network of Virginia works with individuals and families who are living with a wide range of developmental disabilities and special health care needs. Eligible families can be assigned a Local Navigator – a parent or caregiver who is supporting or has supported a child with disabilities or special health care needs. Navigators have been through this before, and are now volunteering their time to help you figure out early intervention programs and other state and local resources. Each volunteer is trained to support other families in accessing supports and services for their child and family and is knowledgeable about local and state resources. Your navigator will also give you support, information, and referrals.
Contact Information for the Family to Family Network
To reach the local contact for the Family to Family Network in Norfolk, or to find your local Center for Family Involvement, call 877- 567-1122.
4. Parent Resource Centers
Alongside special education services, your local public school will have Parent Resource Centers. Parent Resource Centers offer:
- Private consultations with families
- Resources on the special education process and disabilities
- Supportive services for parents/caregivers and students
- Special education resource books and videos
- Parent educational workshops and training
- Cooperative relationships between school, home, and the community
- Newsletters/Flyers on Disability-Related Resources and Information
Contact Information for Parent Resource Centers
You can access the Parent Resource Center for Suffolk Public Schools by calling 757-925-5785 or emailing firstname.lastname@example.org. You can find more information on Parent Resource Centers outside of Suffolk by clicking here.
5. Western Tidewater Community Services Board (CSB)
As your local community services board, Western Tidewater CSB is your single point-of-access for developmental disability and mental health services. We offer wrap-around care for our community members in Suffolk, Franklin, and the counties of Wight and Southampton. Your relief is our priority!
We offer several services to help families living with intellectual and developmental disabilities, including:
- 24-hour crisis support
- Case management
- Respite care
- Mental health counseling for individuals living with ID/DD
- Mental health counseling for family members living with ID/DD
If you could use a little extra support, please reach out! We can help you navigate the sometimes complex state systems to get medical, psychiatric, social, educational and vocational supports for your child, and can allow parents or caregivers to rest or attend to other matters through our respite care program.
Cost of Services from Western Tidewater CSB
We believe quality care should be open to all. That’s why we offer same-day access to care and affordable payment options. We accept Medicaid, Medicare, private insurance, and self-pay. If you have any concerns at all about finances, please call us at 757-758-5106 or contact us online for more information. We don’t want anyone to go without the help they need due to their financial situation.
Contact Information for Western Tidewater CSB
You can call us at 757-758-5106 or submit a request for same-day access online. If you’re experiencing a crisis, call our 24-hour crisis line at (757) 925-2484.
You can find out more about Western Tidewater CSB and the services we offer at www.wtcsb.org. If you do not live in the Western Tidewater region, visit the Virginia CSB directory to access a list of all Virginia community service boards.
A Community of Hope and Caring
WTCSB is your local authority on and access point for mental health, developmental disability, and substance abuse services, but we’re more than that – we’re a community of hope and caring. If you or someone you care about needs support, please don’t be afraid to reach out.
Let’s move forward, together.