My Child Has Been Diagnosed…NOW WHAT?

Written by: Amanda Elias, M.A.

Finally obtaining a conclusive diagnosis as to what your child has been struggling with may feel like the last step in a long search for answers, but in actuality the diagnosis is the first of many steps you should take. The particular path your life will follow from this point forward is dependent upon the specific diagnosis; however most parents and families can follow these general guidelines in order to prepare themselves most effectively.

1) ACCEPTANCE. Hearing the words, “Your child has___”, is something that can be devastating to many parents. They may feel a sense of loss for the child they had dreamt of or expected, or they may feel an extreme sense of sadness or depression. This is to be expected and is part of the grieving process and should not be discouraged. Parents should allow themselves time to mourn, however it is important to ask for support from family members during these times, as they may be experiencing similar feelings. If a familial support network is not available or does not seem to be effective during the coping time, seeking additional support from a mental health professional that specializes in working with parents of children with special needs may be warranted.

2) HIT THE BOOKS! Once you have a diagnosis, head straight to your local library or bookstore. Fortunately, there is an abundance of information available in books (CD formats as well) about almost every childhood diagnosis. Not only are there clinical journals that will discuss what is going on for your child from a medical standpoint, but there are firsthand accounts from other mothers and fathers that have been in your shoes. It is important to access both of these resources, as they each contain valuable information that will help guide you. The internet can also be a useful research tool – Be careful though as some sites are not accurate and may provide you with misleading data. Make sure the information you are reading is from a reliable source. Become an expert on your child’s diagnosis!

3) TWO HEADS ARE BETTER THAN ONE. Many childhood conditions have national foundations that funnel down to local support groups. This can be a great venue for meeting parents who can sympathize with what you are going through, as well as offer advice and support. If face-to-face interactions do not fit your schedule or you desire more anonymity, there are internet support groups, message boards, and email groups that can also provide a support network.

4) SET UP SERVICES. If your child will need special education services at school or through another provider, do not delay in picking up the phone to set up the first appointment or evaluations. Public school districts in Florida have 60 days to complete an initial evaluation to determine eligibility for school based interventions. Families by Design offers parent advocacy support if you feel you are reaching road blocks or if you are simply unaware of what is available out there to help your child. Although a lengthy process, obtaining the proper accommodations and interventions for your child is at the root of their success, both academically, and emotionally.

5) ONGOING SUPPORT. The different stages of your child’s development will bring different stages of emotions for you and your family. Having ongoing professional and environmental support is critical. Not only friends and family who are supportive but a having a therapist who understands the world of special needs is important. This professional should not only be an expert on the inner workings of resources for you and your family but also an expert on understanding and educating you and your family on your child’s diagnosis. It will also be vital that the diagnosis does not become your life or how you identify your child or yourself as a parent.