Families are doing their best. They are navigating the medical system - pediatricians, developmental pediatricians, neuropsychologists, occupational therapists, speech/language therapists, play therapists, and on and on. After all of this, it’s been figured out. Your child is newly diagnosed. Now what? In addition to working the medical system, parents are also expected to work the school system.
Whether it’s early intervention, preschool, or K-12 public schools, now that you have a diagnosis in hand, here’s what to do next:
If you think it has any impact on how your child does at school - physically, academically, behaviorally, or socially - tell school staff about the diagnosis. You can do this by emailing the classroom teacher, or presenting the evaluation report to the teacher or principal. Be sure to include why you are sharing the information and what you are asking for. Do you want extra help for your child at school? Do you just want them to be aware? Giving the teacher a heads up about what you want will cue what kind of response you will get.
Know what to expect. Sometimes kids with a medical/clinical diagnosis will qualify for special education (IEP services), or for a 504 accommodation plan. But, sometimes not. It all depends on whether the diagnosis impacts their education. A diagnosis being present does not mean your child will automatically be evaluated or qualify for school services.
Be aware of the difference between IEPs and 504s. An Individualized Education Program (IEP) is the special education plan. IEPs are for cases where the diagnosis has an adverse impact on education, which cannot be fully addressed by general education and requires “specially designed instruction” (aka teaching from special education staff). Section 504 Accommodation Plans contain less than IEPs, and are for cases where the diagnosis substantially limits a life activity - aka has some substantial impact on their education but not to the extent that they require special teaching. Section 504 plans typically include accommodations that are provided in general education, and don’t involve the student getting additional services. For example, students diagnosed with autism spectrum disorder can present in a variety of ways at school - they may have significant challenges that require more than general education can provide, such as speech/language therapy, occupational therapy, and specialized instruction in a small group or 1:1 using materials at their level. This student would qualify for an IEP. Another student diagnosed with autism spectrum disorder may be at or above grade level academically, be able to participate socially, and work cooperatively with others on class assignments to the extent that their autism does not have an adverse impact on their education. But, they may need to take tests in a small group away from distractions, or may need directions repeated and visuals provided when verbal instructions are given. This student would qualify for a 504 plan. Yet another student diagnosed with autism spectrum disorder may have previously accessed special ed when they were younger, but now has made so much progress that specialized instruction is no longer required, and neither are classroom accommodations. This student would not qualify for an IEP or 504.
Follow up. Once you’ve shared the diagnosis with school, make a note to follow up. Maybe you want to check in with the teacher in 6-8 weeks to find out if your child has shown a need for anything different compared to other kids in class. Or, you have asked for a special education evaluation and you make a note on your calendar to contact them again in 5 school days if there’s been no response. It is easy for communications to slip off the radar of busy staff members, so be proactive and put tasks on your own calendar to keep lines of communication open.
Get help if you need it. It is OK not to know what to do. Take a minute and breathe. Then, ask the doctor for referrals to community resources, look for parent groups to join on social media, and educate yourself on the diagnosis (I love Understood.Org). The kids that have the best outcomes are supported by a team led by parents and including their medical providers and school staff. As team captain you’ve already gotten a great start, keep it up and reach out if you need help.