Whether you’ve undergone prenatal testing to determine genetic abnormalities or have inadvertently discovered a physical anomaly during a routine OB/GYN visit, finding out your child will be born disabled can quickly deflate your elation. However, there are plenty of ways to get yourself and your home ready so that your child has the best life possible.
Changes at home
Depending on your child’s disability, you may wish to make changes to the physical structure where you live. A wheelchair-accessible entrance is one of the most common home modifications. A larger ramp could cost anywhere from $1,000 to $15,000. Other tweaks that can make your job easier include installing lights in dim areas, grab bars in the bathtub, and widening doorways.
Talk to your pediatrician about adding a service dog to your family, which may be able to help your child cope with his disabilities with age. A service dog is trained to help their owners with day-to-day needs such as provide balance, take medication and respond to a telephone.
Work out a budget
According to Fatherly, the cost of raising a child with disabilities to the age of 18 can easily exceed $1.5 million. If his or her disabilities are severe, you will likely have a hand in their care until you are no longer physically able to do so. Consult with a financial planner as early as possible to see what your current budget might allow for and determine ways to cut costs in other areas. You will need to consider the cost of home modifications, hospital stays, insurance, adaptive devices, education and long-term care.
Your estate planning should also include life insurance for the child as well as yourself and spouse or partner. If you establish a special needs trust, make sure your financial partners understand how to write it and that its proceeds do not hinder your child’s ability to receive Supplemental Security Income or other disability benefits. Zacks offers more information on estate planning and life insurance for disabled children here.
There’s nothing that can prepare you for the feelings and emotions that you will experience upon holding your child for the first time. Knowing that your child is disabled, however, may complicate things. You may have mixed emotions, and that’s OK. Find other families in your area with children who have similar disabilities and reach out to these parents for advice. While it may feel overwhelming now, you might just find that your child’s needs are much less complicated than your fears will allow you to believe. Getting to know others in your same situation will also give you a support network and allow your child an opportunity to grow up with peers of similar abilities.
Wrightslaw defines early intervention as, “The process of providing services, education and support to young children who are deemed to have an established condition…” Early intervention services can help enhance your child’s physical, cognitive, emotional and adaptive development. Your child’s condition may warrant the services of a physical therapist, audiologist or nutritionist. Understood.org’s list of early intervention treatments and therapies can help you get a better idea of the scope of services available.
Caring for yourself
Most importantly, don’t neglect yourself. The way you care for your own needs – emotional, physical and spiritual — will directly impact your abilities to care for your child. Get plenty of sleep, maintain a physical exercise routine, eat a balanced diet, go to church and talk to a counselor or family therapist if you’re having trouble coming to terms with your child’s diagnosis.
Having a baby with physical or developmental delays is not something any parent expects when they find out they’re expecting. But if you’re facing this as your reality, the child can still live a full and happy life if you take the time to properly prepare for their arrival.
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