How Not to Feel ‘Disabled’ When You Discover Your Child Has a Disability

As parents, it’s something we always worry about in the back of our minds – the health of our children. With developmental disabilities on the rise (a study from the June 2011 issue of Pediatrics showed that developmental disabilities were reported in 1 in 6 children in the United States in 2006-2008) the likelihood of your child having a disability is real.

So, the question to ask is, would you know what to do if your child has been diagnosed with a disability? Probably not. The good news is that no matter the type of disability or the age of the child when the diagnosis occurs, the steps are similar. Breezy Mama turned to Dennis Allen, CEO of Hattie Larlham (www.hattielarlham.org) for advice on how to navigate services and be your child’s best advocate.

You hear the term “intellectual” and “developmental” disabilities. How are they the same? How are they different?
There’s a great deal of terminology in the field of disabilities. An intellectual disability falls under the broader category of developmental disabilities. Individuals with a developmental disability have a mental and/or physical impairment that impacts their mobility/motor functions, the way they learn or the way they socialize. It’s important to understand that there are varying degrees of developmental disabilities, from mild to profound. But, when it comes down to it, these labels don’t matter. Focus on your child’s abilities, what he or she can do.

What are the first steps a parent should take if she believes her child has a disability?  
Step 1:  Make an appointment with your pediatrician. If at any time you have concerns about your child’s ability or development, your first call should be to your pediatrician. The appointment could include a variety of assessments – your child’s motor (e.g., walking) and cognitive (speaking) skills, as well as vision and hearing tests.

Step 2: Seek a second opinion. This is your child’s development and future. Even though you may love your pediatrician and trust his or her opinion, another assessment of your child from a different pediatrician will give you more knowledge and peace of mind that you are addressing your concern.

Step 3: Seek help early and often. As you embark on this journey you’ll frequently hear the phrase, “early intervention.” This is critical. Once you have a diagnosis, start getting your child the help he or she needs immediately. You can provide a child a great deal of stimulation, through communication, education and physical and occupational therapies, to lessen the impact of a disability. The earlier your child is exposed to stimulation that is directed at his or her disability the more progress you likely will see. Children who grow up without early intervention are more limited by their disability in later years.

What types of intervention services are available?
This will vary by your community. In general, look at the educational, medical and disabilities-related providers/agencies in your area. Your county or local board of health is a good place to start. These types of agencies will likely provide an assessment of your child and will work with you to develop a treatment plan. Also, talk with your school district and explore the resources at your local children’s hospital. Bottom line – there is not one place to go. It is likely your child will receive services from a variety of providers.

Will I have to pay for these intervention services?  
There may be times when the parent/caregiver must pay some portion of the cost of services. Check with your insurance provider to see what will be covered. You also should look into applying for Medicaid, a government health program for individuals with limited income. School districts, health departments and nonprofit agencies provide services. It’s important for you to know that these agencies can only offer so much and as a parent you need to speak out for what you believe your child needs. Explore every feasible avenue that will help your child reach his or her potential.

Any websites you suggest for parents who have a disabled child?
Once you understand your child’s disability, look to the associations that serve people with that disability. These associations often have excellent websites that will connect you with local resources and provide you with a community of support. Following are a few examples:
•    Developmental Disabilities:  The Arc: http://www.thearc.org/page.aspx?pid=2530
•    Autism:  The Autism Society of America:  http://www.autism-society.org/
•    Cerebral Palsy:  United Cerebral Palsy Association:  http://www.ucp.org/

As a parent of a disabled child, how can you be your child’s best advocate?
You need to be your child’s first and foremost case manager. Be intimately involved with diagnosis, services and making sure services work together. Shortly after a diagnosis, think, and write down, the goals you have for your child over the next 5-to-10 years. This is a lifelong process. Seek out support groups, actively engage in creating and following an education plan and never settle. You will encounter challenges along the way and make mistakes. The biggest mistake I’ve seen is where a professional takes on the role of the case manager. As a parent, you know your child. You know what’s best for you child. And you have goals for your child. This isn’t about trust in your child’s teacher or therapist. These individuals should be a part of your team, but you must lead the team. Take responsibility for your child and hold others accountable for what they are providing. Stay diligent, focused and committed to your child’s progress.

How do you address the disabled child’s feelings and the feelings/emotions of the other family members?  
Set a tone for your family.  First, emphasize the child’s ABILITIES.  Support, promote, and encourage him or her to be better everyday. There’s no benefit in focusing on the negative. With that said, this is a journey and your other family members – children, spouses, grandparents – will be affected. Generally, the more severe the disability the more impact on the family. As you explore your community’s resources, look for pediatric and family counselors that specialize in children with disabilities. There may be a time you’ll need guidance and a listening ear as well.

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About Dennis Allen: A true advocate for individuals with disabilities, Dennis Allen has served as the chief executive officer of Hattie Larlham since 1988. In this role, he has helped shape Hattie Larlham, which once provided services to 180 families, into a $35 million nonprofit that provides award-winning programs and services to more than 1,500 people with developmental disabilities throughout Ohio.

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