Down Syndrome

None of these are a diagnosis, and no child shows all of them. This is a list to help you notice patterns and describe them clearly to someone who can evaluate.

1. 1

   Enroll in early intervention immediately

   Birth-to-3 Part C services — PT, OT, and speech — are the standard of care and are free. Call your state program now.

2. 2

   Keep the medical checklist current

   Ask your pediatrician about the Down syndrome health guidelines: cardiac, hearing, vision, thyroid, and sleep apnea screening on schedule. Hearing especially affects speech and school.

3. 3

   Connect with your local parent group in the first month

   NDSS and NDSC both maintain affiliate directories. Local groups will tell you which providers and schools in your area actually deliver.

4. 4

   Plan for inclusion from the start

   Ask what supports would make general education work rather than accepting a placement decision first and supports second. Placement is supposed to follow needs.

5. 5

   Write down what you're seeing

   Dates, examples, the exact words your child used, how long homework took. You don't need a diagnosis to keep a record — you just need a notebook. This becomes the backbone of every conversation that follows.

6. 6

   If your child is under 3, call early intervention today

   IDEA Part C gives every state a free early intervention program for babies and toddlers from birth to age 3. You do not need a doctor's referral and you do not need a diagnosis — a parent can refer their own child. Search "[your state] early intervention Part C" or ask your pediatrician for the number. For ages 3 and up, the same law (IDEA Part B) makes your local public school district responsible, even if your child doesn't attend school there yet.

7. 7

   Put your request for an evaluation in writing

   Email or hand-deliver a dated letter to the school principal and the special education director asking for a full initial evaluation, and say what you're worried about. Writing it down starts the legal clock. Ask for a copy of your Procedural Safeguards at the same time.

8. 8

   Talk with your pediatrician

   A medical visit can rule things in or out — hearing, vision, sleep, iron levels, anxiety — and can open the door to outside evaluations and therapies that run alongside anything school provides.

9. 9

   Say it out loud to your child, gently

   Kids usually already know something is harder for them. Naming it kindly — "your brain works in a particular way and we're figuring out what helps" — turns shame into a plan.

These are national nonprofits, university centers, and government resources. Firm Footing isn't affiliated with any of them — we just think they're worth your time.

• National Down Syndrome SocietyNew-parent resources, health care guidelines, and policy advocacy.
• National Down Syndrome CongressFamily conference, affiliate groups, and education resources.
• ASHASpeech and language development and AAC information.
• CDC — Learn the Signs. Act Early.Free milestone checklists by age, plus the Milestone Tracker app. The gentlest place to start when your child is little.
• Center for Parent Information and ResourcesFind your state's free Parent Training and Information Center — real humans who will sit with you through an IEP.

Related guides

• Autism Spectrum DisorderA different way of experiencing communication, social connection, and sensory input — a whole way of being, not a deficit list.
• Intellectual / Developmental DisabilityA slower path to learning — with a destination that still includes independence, work, and a life your child chooses.
• Multiple DisabilitiesWhen needs overlap, the plan has to be built as one plan — not stapled together from three.