You recently found out that the little one in your womb or the brand-new baby you’ve just given birth to has been diagnosed with a life-altering birth defect. You are not alone. Each year, nearly 8 million babies are born with disabilities of all kinds. You’re scared — that’s understandable. You are likely also concerned with what to do next. Before you jump into action, take a moment to breathe. Then, give thanks for the life that you’ve been entrusted to protect and preserve. Once you wrap your head around your situation, you will be in a better position to make the most of it.
special needs is not a reason to panic
Having a baby born with special needs will no doubt have an effect on you and your entire family. But you don’t have to panic. No matter what the diagnosis, there are support organizations available in every state. If you’re yet to give birth, you may be concerned about everything from delivery to breastfeeding — Specially Gifted has previously written about nursing a special needs child.
Look for your “tribe,” which might be a nonprofit or a support group of other moms and dads of children who are also uniquely gifted. Establish these networks early on so that you will always have a group of individuals to fall back on when you need advice or just a listening ear.
prepare for change
Having a baby is, in itself, a life-changing event. Having a baby with a disability means that you may have to make a few alterations to your home and lifestyle beyond what you initially expected. Talk to your child’s pediatrician about ways that you can make their integration into home life as seamless as possible. One thing they may suggest is making home modifications, such as building a wheelchair ramp or altering the bathroom to make hygiene less strenuous.
According to Sage Mobility, there are many programs that can help you pay for the cost of upgrades. However, depending on the severity of your child’s disability, it may also make sense to begin your new home search now to find a space more suited to your child’s needs. If you ultimately make this decision, search online listings early and often to get an idea of what’s available and what you can expect to pay in your location of choice. In Marietta, for instance, you can expect to pay nearly $400K for a home as it’s a very competitive market.
practical matters
One of the first concerns for many new parents of a child with disabilities is paying for their healthcare coverage. You should know that health insurance providers can’t deny coverage based on a pre-existing condition. Your special needs child may also have other options, including, depending on where you live, state-sponsored Medicaid. Interestingly, Medicaid covers many things traditional health insurance may not, including diapers for older children and supplemental nutrition.
Health insurance is not your only consideration in this arena. You might also take out a life insurance policy on yourself with your child as a beneficiary so that money is available to take care of them when you die. This is especially important if you are an advanced-age parent and your child’s disability is not expected to significantly affect their lifespan but can make it difficult for them to sustain their own financial needs. For example, your child is born with limb deficiencies but is otherwise healthy — they may find it difficult to work but live an otherwise healthy life. It is difficult and emotional, but you’ll also want to talk to your insurance broker about ensuring your special needs child. While there are some obstacles that go along with the process, it is possible with the right advisor.
planning ahead
Looking toward your child’s future, it’s also crucial that you have the right documents in place. Your special needs child may not have the ability to communicate for themselves. For this reason, you want to keep legal papers, such as the birth certificate and Social Security card along with healthcare and financial directives, trust or living wills, or any assets available to them. Ideally, you will also have guardianship papers drafted for any individual organization that will take over your special needs child’s care in case of your death or disability. Friendship Circle also suggests updating a letter of intent each year, which is a document you can pass on to caregivers that help them understand your child’s daily routine.
education
It doesn’t matter what your child has been diagnosed with — knowledge is your best friend. Knowing what to expect is the best way to alleviate your fears and uncertainties. Spend some time researching their condition, talk to specialists, and reach out to others who’ve walked in your future path before. You may find that their care is not as daunting as you feared, and you can move forward feeling confident in your abilities to provide for your loved one.
self-care
As a caregiver, you may feel worn down and overwhelmed and yet extremely protective of your special needs child all at the same time. This is completely normal, but you do have to take time to step away. Self-care is crucial for caregivers — without it, you may face caregiver burnout, which can leave you less effective when caring for the person that means so much to you. Performance Health recommends engaging in healthy habits, such as eating well and getting enough sleep.
Remember, you can’t do it alone, so do not be shy about calling for a helping hand every once in a while. This might be another family member or a respite nurse that can take charge of your little one from head to toe in your absence.
Welcoming a baby with special needs is both a joyous and heart-wrenching occasion. It’s normal to feel grief for the life you expected and to be overwhelmed at the newness of it all. But all babies are a blessing, and, with a bit of preparation, you will soon find that their disability simply becomes part of your life. You will celebrate each moment with them and, ultimately, will truly understand the meaning of unconditional love.
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