You suspect something is wrong. You spend weeks - likely, months - visiting doctors and other professionals. After all this running around, you get a diagnosis. During the evaluation phase, you hope and pray for a diagnosis, an answer to all those funny feelings and hunches that led you to the doctor in the first place. More often than not, parents get the diagnosis and don't know what to do next.
Regardless of what your child has been diagnosed with, these are the next five steps you take to get your child the support he needs.
Gather facts The key word here is "facts." This can be tricky, especially with the enormous amount of misinformation and opinions on the internet. Go to reliable resources, such as well-known organizations, organizations associated with a hospital, or state organizations. Check the internet, the library, and doctors' offices. Be careful what you read in a bookstore - though many people write books in the spirit of educating and helping others, some write books solely to make a profit. Cross reference information among organizations - if you see the same information in a few different places it's more likely to be true. Don't be afraid to call your doctor (or get a second opinion) and ask about specific information you found. Knowing the challenges your child will face and ways to support him will help your family now and as you continue on this path.
Know your rights You need to know what your child is entitled to and how you need to ask for it. Since each state's laws regarding children with special needs vary, go to your state's Department of Education website to find the guidelines and procedures for getting your child services. Although costly, it may be beneficial to consult a lawyer who has experience in special education so you cover your bases and go into your meetings informed and prepared.
Stay organizedAs you absorb all this information, stay organized. Keep all your child's evaluations, IEPs, and correspondence from the doctors or school district in one place. You want to have easy access to this information for phone calls, appointments, and meetings. There is so much information coming in, you are not expected to memorize it all. Keep it handy so you can refer back to it.
Get help Join a support group, talk to a friend, or write in a journal. This is an overwhelming process and you need someone to talk to. It's easy to isolate yourself because you think no one could possibly understand what you're going through. They don't understand- it's your story. But they can be a shoulder to lean on, so find somewhere to lean. You're going to need it. (And that's OK.)
Move forwardNow is the time to start helping your child. You are absolutely entitled to feel sad, frustrated, and confused. If you get caught up in those emotions, you are unable to help your child. Put one foot in front of the other and do the best you can each day. Pat yourself on the back (and pat your spouse's back!) for becoming educated, informed, and active parents on this new journey.
Jennifer Cerbasi teaches at a public school for children on the autism spectrum in New Jersey. As a coordinator of Applied Behavioral Analysis programs in the home, she works with parents to create and implement behavioral plans for their children in an environment that fosters both academic and social growth. In addition to her work both in the classroom and at home, she is also a member of the National Association of Special Education Teachers and the Association for Supervision and Curriculum Development.