For the nearly 7 million disabled students in the U.S. and their parents, life and parenthood can look a little different from mainstream presentation. According to the National Survey of Children with Special Health Care Needs, around 12.8 percent of children under 18 have additional needs. That equates to 20 percent of households with children. For people of color, the difference is stark. Black and Latino students account for 45 percent of students that access the special needs education system. For those families, many of them find themselves shocked by the reality of raising a child with disabilities. From diminishing financial affordability to the increased risk of mothers losing themselves post-birth, the road through parenthood for a special needs parent is often hidden away and disregarded.
Accessibility Is Not Universal – Just Yet
It is true that accessibility for those with disabilities has come a long way in recent decades. There are now federal and state laws aimed at protecting your child, such as the Individual with Disabilities Act. However, this does not mean it is widespread. There is still an educational gap for disabled students of color. While most students are entitled to free public education, the provision of appropriate accessibility tools so they can access the curriculum can vary greatly according to the school district and state.
In the workplace, only four in 10 people with special needs are hired. For a parent of children with special needs, this can be a shock. In fact, most parents will say that one of the things they notice about raising a child with special needs is how much time must be spent on raising awareness and pushing for recognition of their child’s rights as they grow older.
Your Finances Will Take A Much Bigger Hit
If you are raising a child with special needs, financial planning takes on a new level of importance. The added costs of therapies, medical treatments, and financial provisions for their education can add a hefty burden to any household income. For black mothers across the country, this is doubly felt. According to data from Lean In, black women are paid 38 percent less than their white male colleagues, and 21 percent less than their white female colleagues. In money terms, that means black women are paid $0.62 for every $1 paid to white men. Couple that with the earning decline experienced by mothers, and the limitations in working hours that mothers deal with when raising a child with special needs, and you have a seriously precarious financial outlook.
Setting up a special needs trust can help you save for long-term financial needs, including provisions for after you are gone. As a bonus, amounts saved in a long-term trust are not counted when you apply for federal benefits like Supplemental Security Income. Supplemental Security Income is aimed at families with low income, and is $783 for an individual and $1,175 for a couple. Children with lifelong conditions like cerebral palsy may also be entitled to financial assistance in the form of cash assistance or a Temporary Assistance for Needy Families grant, based on your state’s requirements. Your local health and human services department will be able to give you all the information you need on applying.
Loneliness And Mental Wellbeing Will Become Extremely Important For Yourself And Your Child
We have seen reports of black mothers not getting enough aftercare for postpartum depression. When you are raising a child with special needs, the mental burden can be much heavier. Coping with the realities of raising a child with disabilities and all that comes with it can leave mothers feeling alone and worn out. Similarly, mothers find themselves having to take on the task of supporting their children, who are more prone to experiencing isolation, loneliness and anxiety as they grow up.
In this case, self-care becomes critical. It is important to surround yourself with a strong support network, and know where to get help if you need it. Support groups for parents of children with disabilities – like Different Dream and Mommies Of Miracles – can be a safe space for discussing your fears and feelings. They are also a great way to connect with others in your position, ensuring you do not feel alone – because you are not. And if this is not enough, do not be afraid to seek professional help by speaking to a therapist. They can provide valuable insight and advice on coping mechanisms for parents of children with special needs.
Finally, remember that just because your experience of motherhood is different, it does not mean it is any less precious. While there are some challenges, there is a long list of good memories to look forward to. Don’t be afraid to march to the beat of your own drum.