Now what?

Following a diagnosis, many parents find themselves experiencing a range of feelings. These feelings may include grief, denial, anger, fear, and confusion. Whatever it is that you are experiencing, it is important to know that many other parents have experienced similar emotions, and you are not alone. It is equally important to recognize and work through these feelings as you begin to search for services and support for your family and for your recently diagnosed child.

One of the first steps you can take is to become as well versed as possible on the diagnosis your child has received. There are great resources you can find online, at a local library or by referring to the recommendation section of your Evaluation/Assessment Report. Observing your child closely and identifying his/her specific needs will further guide you in determining the appropriate type of support and treatment that will best match your child’s needs.

Making sense of the information you come across regarding your child’s diagnosis can be overwhelming! Please know that there are national and local organizations that exist to support, advocate for, and provide guidance to parents. As such, an important next step would be to research and get involved with organizations in your area.

Two of the most important choices you will make for your child are, 1) your child’s educational placement, and 2) the treatment you decide on. If your child is school age, a good multidisciplinary educational evaluation is key in determining the type of services your child will need to access their school curriculum. Learning your rights as a parent, under the Individuals with Disabilities Education Act (IDEA) law, will empower you to participate and make decisions surrounding your child’s education.

As you begin to access your local educational system, work with your local school district to learn about and utilize their special education services. When selecting the right treatments for your child, identifying your child and family’s specific needs is an important first step, as each family has different coping strategies, means to access treatments, and availability for treatment to occur. Furthermore, as your child progresses through treatment, and as they mature, your needs as a family may shift.

As your child moves through different milestones, numerous professionals will need to know specific information regarding the treatments and therapies your child has completed. A well-organized process of record keeping can help make your life easier.

As the parent of an individual with a developmental disability, you will be faced with many new things you’ll need to learn throughout your journey. At times, it may feel challenging to balance routines, schedules and plans and ensure that every family member is involved, and feels supported and accepted. Establish time to engage in “fun family activities” that are inclusive of everyone. Make time to laugh, relieve tension, and keep things in perspective. Individuals with developmental disabilities are great teachers. You will have ups and downs, triumphs and struggles, so taking time for yourself is vital in reducing the stress that comes with parenting anyone, including an individual with developmental disabilities.