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A New Special Needs IDEA: Inform, Document, Enjoy and Accept

In the special needs world, IDEA usually means "Individuals with Disabilities Education Act." But here's another IDEA: Inform, Document, Enjoy and Accept - four keys to success in managing it all when you have a child with special needs.

Inform

Lots of our stress as parents comes from the unknown," says Cherie Takemoto, executive director of the Parent Educational Advocacy & Training Center (PEATC) outside of Washington, DC. "When you're well-informed and can put things into perspective, that alone can help."

"Learn everything you possibly can about your child's disability and rights under various laws," advises Suzanne Hill, former manager of the U.S. Marine Corps' Exceptional Family Member Program.

PEATC offers free resource materials and a toll-free information line offering "a chance to talk with another caring person who has probably walked a lot of the same journey," says Takemoto. "They'll help callers to break things down into more manageable pieces, and figure out how to get what they're looking for, in ways they might not have thought of."

Document

Managing the details of your child's health history, specialists and insurance can seem overwhelming. Create a well-organized filing system, document critical information and make sure your spouse and child's caregivers know where to find it.

Keep frequently-requested information in your wallet to save time and frustration whenever schools, doctors and others require it.

Documenting conversations with your child's teachers, caregivers, doctors and other support providers, and putting your concerns, ideas and requests in writing can save time and prevent misunderstandings.

Another stressor is worrying about what would happen to your child if something happens to you. To protect your child against the possible loss of government benefits, work with a professional with special needs estate planning expertise to create an estate plan.

Enjoy

"Remember that your child is a child first," says Takemoto. "Don't look at your child as something that needs to get fixed. Enjoy your child." Focus on your child's abilities and possibilities, rather than limitations.

If you have other children, it can be challenging to find time to spend with them. Try reserving a specific time each day to connect with them. Another option is "TLC Time." Takemoto explains, "Tell your kids they can come to you any time they need TLC Time and ask for it. When they do, stop what you're doing and spend a few moments focused only on them."

Schedule regular dates with your partner to enjoy time as a couple. Caring for a child with special needs can take a heavy toll on a marriage.

Finally, take care of yourself. It is said that people are like rubber bands. If we're constantly stretched to the limit, we lose our ability to bounce back. We need to relax the tension regularly to maintain our resilience.

Give yourself a daily time-out, a few minutes of peace and quiet. One idea is to keep an egg timer on your nightstand and uses it to grant yourself three minutes of silence and deep breathing daily. "Mommy time-outs" can also help when you feel yourself stressing out.

Sometimes, you need a longer break than an egg timer can provide. Mental health or social service agencies, PEATC and disability support organizations can help you locate qualified, medically trained respite providers or try the ARCH National Respite Network and Resource Center's online, searchable database. (See sidebar.)

Accept

Accepting help may be one of the hardest things for parents to do. Yet, it's also one of the wisest.

Family members and friends may be willing to help, but might not know what to do. If you make a list of tasks that need to be done, it's much easier to ask others to help. You can even coordinate care for your child through a free online tool from the National Alliance for Caregiving, which helps you define tasks, lets you invite others to view the tasks and sign up to help, and tracks their commitments. Those who agree to help receive automatic e-mail reminders.

Support groups, online parenting networks and Parent to Parent organizations can offer emotional and moral support. "Networking with other parents whose children also have special needs can make you feel less alone and help you to put your own situation in perspective," says Takemoto. She suggests trying to connect with parents whose children have similar challenges, but are a bit older than your own to learn from their experience.

"Not all support groups will work for you," says Hill. She suggests attending at least two meetings before deciding. Though disability-specific groups can be helpful, Hill suggests trying mixed or non-specific support groups as well.

Parent to Parent offers a different type of support for parents, through a one-to-one match with an experienced, trained Parent Partner whose child has similar special needs.

Melanie G. Snyder is a freelance writer.

Feb 10, 2013 10:54 am
 Posted by  mom39again

I would like some help finding local groups in chester county for children with chromosome disorders.

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