Since writing this post about getting Levi’s diagnosis, I have had a few friends call me about the step by step process. Not knowing what is wrong is a frightening place to be and knowing where to go to get answers can be overwhelming
These 7 steps will help you in your process of getting a diagnosis.
- Be observant and take great notes. Be aware of the developmental milestones your child should be making. What to Expect the First Year is a great book for helping you know those typical developmental milestones. These are estimates and all children move at their own pace. However, if you notice that your child is significantly behind or is not babbling, not making eye contact, not attempting to sit up, etc, these are things your doctor needs to know. Keep track of when your child rolls over, sits up, says his first words. Also observe things that your child does that seem unusual: crying excessively, not tolerating certain sounds/lights/textures, etc. Write these things down. Mark how often a certain behavior occurs. Taking a list with you of concerns will help the doctor understand the full picture. I have even videoed my children’s non-typical behavior to show the doctor.
- Find a good pediatrician. Find a doctor that listens to you. Ask your friends about who they see. Find a friend with a special needs child, she may be able to point you in the right direction.
- Research your state’s resources. Does your state have early intervention where they will test your child for free? Many states do. They will come to your home, evaluate your child. My state has an early intervention program that two of my children were tested under. This also helped my pediatrician and I make other treatment decisions. My state offered therapy such as occupational therapy, physical therapy, speech therapy, feeding therapy and weekly visits from a developmental specialist all for free. After age three, Grace was placed in a free preschool until she entered kindergarten.
- Research your insurance. Insurance is getting more complicated. If you have insurance, research what services they will cover. Do they cover therapies? Will they cover the specialists in your area? Having a list of covered doctors and treatments will prepare you when your doctor refers you to a specialist. Knowing beforehand who your insurance works with will save you time and headaches.
- Find the specialists in your area. In Phoenix we have the Melmed Center and SARRC, both of whom work with children who have autism. There also is a children’s hospital that has developmental pediatricians, child neurologists and other specialists.
- To medicate or not? Medication is a hot topic. How do you and your spouse feel about medication? I was against it and didn’t want to use a “crutch.” However, I had a great child psychologist who talked to me openly about the risks and benefits of the medication she wanted me to try. She also helped me realize that medication would reduce his behaviors so that interventions could work. Don’t be afraid to ask your doctor questions about medication. Be educated about what your child will be taking.
- Support yourself. Find support groups. These are great resources for doctors, books, education and just emotional support. These women and men understand what you are experiencing because they live it, too. Read this post about 911 Groups. It is important to surround yourself with people who will support you and help you.
This is an involved process and the diagnosis and treatment process felt like a part-time job. But this is my child’s health I am managing and it is worth it.