Dreams Delayed

When your child has autism or other developmental delays, he won’t conform to a typical schedule of milestones—and hopes you had envisioned for him may come true later than you imagined. Here are six pieces of advice, from parents who’ve been there, on adjusting to a child’s limitations.

Being the parent of a child with developmental or psychiatric problems can be challenging, in several obvious ways: giving him the help and support he needs, handling behaviors that can put tremendous stress on the family. But there’s a third challenge, less openly acknowledged: the pain of having a child who doesn’t meet your hopes and expectations. When a child doesn’t develop typically, doesn’t go to a “regular” school, can’t do things other kids can do, you find yourself having to manage your own feelings, as well as his needs.

Here are some pointers— from parents who’ve been through it—on parenting the child you have.

1. Don’t give up your hopes and expectations—modify them.
Sounds glib, but focusing on what your child can attain, rather than what you wish he could, is as important for you as it is for him. And when a child accomplishes something that’s very difficult for him, even though it may be easy for others, it’s genuinely thrilling.

2. Build a team.
Caring for a very challenging child can be lonely. You need to be able to share frustrations as well as breakthroughs with other adults in her life—spouse, teacher, therapist, whomever. Working together with allies to meet her needs is much more satisfying for you, too.

3. Manage other people’s expectations.
Extended family and friends need to be clued in to his developmental level and quirks so that gatherings can be pleasurable, rather than feeling like performances or tests.

4. Create opportunities for success.
If you can structure her learning, play, and social interactions so she can be successful, you will feel as good as she does. That doesn’t mean eliminating all challenges; it means making them reasonable and not overwhelming to encourage confidence.

5. Connect with other parents.
A support group, online or off, of others with similar experiences, who are open to sharing feelings as well as tips and ideas, can be invaluable. They’re just the right audience for a tough problem or a small but exciting breakthrough.

6. Become an advocate.
It’s not the same kind of pleasure as watching a typical child blow through milestones, but we know parents who have grown personally, found great satisfaction, and developed amazing skills in the process of fighting to get a child’s needs met. As one parent recently summed up the experience: “When your expectations of being a parent and the child you have are different, you really have to learn to parent the child you have. And I think that can be a long process.” It can also be rewarding.

The Child Mind Institute is an NYC-based nonprofit organization dedicated to transforming mental health care for children everywhere. Visit ChildMind.org for a wealth of information related to your child with special needs, including strategies for dealing with a diagnosis and behavior, outlines of symptoms and signs, practical tools, and educational videos.