When a child is born--say "Congratulations. He/she is beautiful". Not I'm sorry or any other thing that pities. Don't ask what is wrong with the child and when will he/she get better. Instead ask, "What is the doctor saying about a diagnosis?" "Can you tell me more about what is happening?"

Don't ever say, "You are such a special person, God only gives children like this to people who are strong enough to handle it" This not always true. There are many parents who can't handle it. It is hard! Mother Theresa said when people would say that about her, "I know God will not give me anything I can't handle. I just wish that He didn't trust me so much."

Here is a wonderful way that an on-line friend recently offered support to a parent who has a child with profound disabilities. "You have our support. Although, I have no idea the struggles you have faced as a family I know what it is to love a son....know I am here to listen. I like learning and I believe you have a lot to teach! And you can count on us being there for you."

So what does it mean to "Be there for you"?

1. It can mean just listening.

2. It can mean going on the Internet and learning more about the disability so that you can understand the new language the family is learning.

3. It means asking questions (when the time is right) and really listening to the answers.

4. It means asking the parent to show you the child's routine so that you can help if the parent isn't available.

5. It can be the offer to babysit or provide respite care--and mean it. Ask the parent what date you should put on your calendar to come over to babysit, because they won't ask you.

6. It can be getting as mad as the parent when a doctor, teacher, school district does something stupid or insensitive.

7. It can mean rejoicing when something good happens. Recently a 3-year-old child with Down Syndrome learned to clap. Clapping is a huge neurological milestone. So instead of saying that's nice or hasn't she clapped before--go and buy a bottle of wine and celebrate this milestone. It is as if another child just got accepted to the college of their choice.

8. It can be understanding the implications of when the alternative caregiver, like a nurse, doesn't show up. How that one person having her own family emergency, puts your friend's family out of sorts, raises the stress, and cause the entire family's schedule to be changed.

9. It can be offering to transport the siblings to play practice or soccer or whatever, even if it is a little out of the way. That way the family who is raising the child with a disability doesn't have to load everyone in the car with all the equipment or all the behavior and the sibling doesn't have to miss out on their life.

10. It means never using the word "retard" or "retarded" and stopping anyone else you hear using the word. It is a very offensive word. You might want to do research on "First Person Language."

Sometimes it means bringing ice cream. The most caring and meaningful thing that ever happen to my family on our journey, was when my son was just diagnosed. Our next door neighbors came over with a variety of types of ice cream, bowls and spoons. We just sat on the porch and ate ice cream and didn't say anything at all. But they were there and we knew that they were there and at that moment that was all we needed.

Many families are happy to answer questions about their child and what it is like to be a parent of a child with a disability. So feel free to ask. However, some parents aren't there yet and may never be. So tread lightly and bring Ice Cream!!