Finding out you’re expecting a child with a mental or physical disability can set off a range of fears, conflicting feelings and awkward interactions with people you know well but who don’t know what to say or how to help. Talking about it can help you work through emotions such as anger, guilt, denial and sadness, and it’s important to deal with those feelings because there are lots of medical and logistical matters to work out and care services to investigate before your child is born.
Early intervention and treatment considerations are essential because there are specialists and experts to consult about home preparations, insurance matters and any additional expenses you can expect.
Coping with a new reality
Accepting the truth of the situation and what it means for you and your family is an essential first step. Rather than denying or trying to ignore it, take advantage of your emotional support system by talking with loved ones, your partner and a counselor, if necessary. Maintain your family’s normal routine to keep from dwelling on the negative aspects of the situation. Instead, imagine the positives, the birth of a loving new child and the possibilities and unexpected delights that come with a new addition to your family.
Education and information are often helpful in such situations. Arming yourself with knowledge will help you see things from a fresh perspective, one free of misconceptions and unfounded fears. And you can use your newly acquired knowledge to educate others about your child’s condition and requirements, which will help support among the people who are in the best position to provide it.
Your homemodifications will depend on the nature of your child’s disability, but accessibility and ease of movement are generally key factors where a disabled child is concerned. Convenience and an environment conducive to daily activities are important, but your home needs also to be a place where your child can learn, explore and grow. As with any child, yours should have a home in which they can feel joy, inspiration and supportive love. Many of the modifications you’ll make can be made easily and affordably.
If your child will require a wheelchair, you’ll need a stepless entry and an access ramp. A first floor bedroom is optimal, with hallways and doorways wide enough (36 inches across) to accommodate a wheelchair or some other mobility assistive device. Hardwood or tile flooring is usually best in terms of safety and accessibility and can often be done as a DIY project. Bathrooms will need safety features such as grab rails and sufficient space for maneuvering in. Bear in mind that if your house isn’t suitable for such modifications, it may be necessary to research accessible homes in your area. For example, homes in Nicholasville, Kentucky, typically sell for about $178,000. If you do decide to move, begin by searching online for accessible properties.
Disabled children receive federal Supplemental Security Income benefits, and some are eligible for Medicaid (some states offer special Medicaid coverage options). Early and periodic screening, diagnostic and treatment are covered under Medicaid as well as health and long-term care services. Medicaid supplements help meet special education needs and fills coverage gaps for the privately insured.
If you’re expecting a disabled child, consider opening aspecial needs trust, which provides the means for distributing money set aside for your child to pay for services and amenities the government does not provide. And begin planning for any services needed when your child becomes an adult.
It’s not uncommon for parents expecting a disabled child to feel as though their lives have been turned upside-down. There are personal emotional needs and planning arrangements that need attention as soon as possible. Be sure and take the time to learn your benefit and insurance options before your child is born.
Emily writes for MightyMoms.