Other resources

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Support from the community and a church is very important for families that are battling MLD. For assistance in finding a church in your area with a disability ministry, please visit the Joni and Friends website and click on your state for more information. Joni and Friends also offers family camps for families who have members with disabilities. These camps are offered all over the country, and each disabled child or individual is paired up with a helper so that the entire family can enjoy the camping experience. Click here for more information.

Exceptional Parent magazine is for parents of special needs children and is very helpful in highlighting and discussing resources that are available. Click here for subscription information and online resources.

The Challenged America Foundation is a nonprofit organization that can provide assistance with therapy and purchasing mobility equipment. Click here for more information.

Complex Child is an e-magazine that offers articles and information on issues affecting children with special needs. This site has numerous informative articles organized by topic such as GI and Nutrition, Metabolic and Genetic, Respiratory, Education and Insurance and Medicaid.

Articles

Many times it is very difficult for families with special needs to integrate with a church and receive the necessary spiritual support that they desperately need. Please click here to read an excellent article that appeared in the July 2008 issue of Exceptional Parent that discusses how you can work with people in your church to create a “spiritual IEP”!

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In the May 2008 edition of Working Mother, an article entitled The Quiet Struggle states “The number of working moms raising kids who have special needs is eye-opening. Nearly a quarter of a million children under age 3 have a developmental delay and difficulty moving their arms or legs or both, according to recent U.S. Census figures. More than 400,000 children who are 3 to 5 years old have a developmental delay and are challenged when walking, running or playing. And among those ages 6 to 24, more than eight million have a disability. All told, about 9 percent of employees care for a child with a disability.” To read how some working mothers cope with these challenges, click here.

Travel

Traveling with a child with MLD can be very difficult. We have found that using a van with a wheelchair lift or at least reclining seats is most effective.

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If you do have the opportunity to travel with your child, you may want to consider Disneyworld in Orlando, Florida. We have taken our children there several times (even while one was on a ventilator) and it has been a tremendous experience. The park is well set up for people with disabilities and employees are trained on how to interact with the children. Special parade viewing areas are set up for people with disabilities, and the characters regularly stopped by so that each of my children could see the characters. Here are some excellent resources for planning your stay at Disneyworld:

If you plan to take a Disney cruise, there is an excellent article written by a wheelchair-bound, ventilator dependent and g-tube fed woman on her experience. You can read the article by clicking here.