Don't be afraid to stop and ask for "directions"

You might have read What to Expect When You're Expecting while you were pregnant. I did. Other than a brief mention of prenatal testing, there weren't any chapters on delivering a child with a disability. No one told me they might rush my baby to the Children's Hospital, leaving me with an empty room. No one told me that doctors don't know everything and that I shouldn't be afraid to question them. No one told me I'd have to watch my newborn undergo surgery ......

There were a LOT of things no one told me, and I hope to share some of the things I'd include in my version of What to Expect in the Coming Years:

• It's ok to grieve. Be thankful your baby is alive, but go ahead and mourn the loss of some of your dreams. And learn to dream new ones.......
• It's ok to ask for help. Ask your family to support you. Ask your friends to watch your other children. Ask to talk to a social worker or other professional.
• It's ok to question the doctor and other professionals. Seek a second, or third opinion if time allows. Follow your instincts if you think something is wrong.
• It's common for this to put a stress on your marriage if you're married. Seek help if you need it.

*Note: Some of these links take you to state agencies that are funded to assist with these issues. If you do not get the help you are seeking, be sure to let their director and/or board of directors know.

If you'd like to talk to other moms who have a child with a disability, look for support groups. You can find some here. If you have a Children's Hospital near you, they may have a resource center that can connect you with other parents as well.


If you are at a Children's Hospital, ask to speak with a social worker.You and/or your child may be eligible for a number of programs:

Children with Special Health Care Needs Insurance
Hoosier Healthwise
WIC
Medicaid Waivers
CHOICE (Community and Home Options to Institutional Care for the Elderly and Disabled)
SSI
other benefits from FSSA

Some of these programs can seem overwhelming and confusing to apply for. It is OK to ask for help; if you don’t get the information and support you need to understand a program, you can and should ask to speak to a supervisor. You can also contact ASK for more information on health care financing. The Arc of Indiana has family advocates that can help you apply for Medicaid waivers.

Your child may not get a specific diagnosis, but may fall under the general category "developmental delay". If the child is 0-3, you can ask for assistance from First Steps, Indiana's early intervention program. If your child is older than 3, s/he may be eligible for special education services through the public schools. You can find more info on making a referral to special education here or through IN*Source.

Learning and connecting while you are also juggling medical issues and appointments can feel overwhelming. You may need to apply for one program at a time. Many families find it helpful to keep a notebook or folder documenting the programs they have connected with and photocopies of the applications.