As a “proud single mom” to an 8 year old with multiple disabilities, LaJoy Johnson-Law understands the complexities of navigating D.C.’s health and education systems. This first-hand knowledge has helped Johnson-Law in her role as a parent support specialist at Advocates for Justice and Education.
Here, the disability advocate shares the challenges and the joys of raising her daughter, Abria, as well as how she prioritizes self-care and her advice for other parents of children with disabilities.
What do you love about the work you do?
Advocates for Justice and Education (AJE) is the federally mandated parent training information center under Individuals with Disabilities Education Act (IDEA). AJE helps empower families to advocate for their children. There is no greater advocate for a child than their parent or guardian, and I love how AJE helps parents navigate the D.C. education system and ensure that parents have the information and tools necessary to best advocate for their children.
What do you love about being a mom?
I love the fact that I am a mom, period. It is a miracle that I am a mom. My daughter was born at 23 weeks weighing 1 pound, 6 ounces. The doctors said that she wasn’t going to make it, but I knew she would. So watching her love, laugh and grow into the beautiful little girl that she is is the best gift I could have ever asked for. Even though there have been many health challenges, my daughter is here. I am so honored to be Abria’s mom.
What do you find challenging about raising a child with disabilities?
My daughter has chronic lung disease, epilepsy and a developmental delay due to her extreme prematurity. I think the biggest challenge is being financially stable. I have lost many jobs due to putting my daughter and her health first. Abria has many inpatient visits, outpatient doctor visits, therapy appointments, and she has often been too sick to go to school. It is a challenge balancing a work schedule and my child’s medical and
My motto is “Abria comes first in everything that I do,” and I pray to God for him to take care of the rest. Things were so bad at one point, I even got a writ of eviction, and my daughter and I were about to be homeless because I was not able to work due to taking care of her healthcare needs. It has definitely been a struggle, but we are here.
What’s something that makes juggling motherhood and your career a little bit easier?
My mom and godmother! Thank god for their support. They have been my rock and help me balance out the many things that need to be done. My daughter also has an amazing IEP team at her school, Rocketship Legacy Prep, and she has an amazing medical team at Children’s National Medical Center. All of this combined helps tremendously.
What’s something great about raising a child in the D.C. area?
I love that we can literally be in three places at once. I love the fact that Abria and I live in D.C. but are 5-10 minutes from Maryland and Virginia. We get to experience the monuments in D.C., the National Harbor in Maryland and the Pentagon and Pentagon City in Virginia.
What do you and Abria love to do together?
Abria and I love to take walks, paint, get ice cream, go to the library and playground and take fun family trips in the summer. We visit different cities and experience different children’s and science museums. We also have movie nights; we watch a movie she picks and eat popcorn. We even have Facebook Live series called “Storytime with Abria,” where we just read stories and have sing-alongs. It’s cool to make our own home videos.
How are you able to maintain a social life between working and parenting?
I surround myself with amazing friends who are also mothers. We go out on trips with our children, and we will even get sitters and have a girls’ night out. My mom has been really amazing; she will keep Abria for the weekend about twice a month.
I also receive respite (Pre-COVID); a registered nurse comes to my home and watches Abria so I can get a break. This service is provided by Health Services for Children with Special Needs (HSCSN).
Meet mom-of-two and career firefighter, Rachel Calderon-Murphy
How do you take care of your mental and physical health?
I love going to the gym and taking Zumba classes and exercising. My gym has a child care center, so it is a blessing to be able to take Abria with me when I go workout. I love music, and I will often dance to music around my home to keep my happy spirit. I also love bubble baths; they are so relaxing and calming. I love lighting my candles, playing my calming music and taking a bubble bath. I also wake up each morning and say a little prayer, and before Abria and I go to bed we say our prayers.
What are five things you always carry in your purse?
My keys, wallet, makeup bag, phone and my daughter’s spacer and medicine.
What would you do if you had one hour without any responsibilities?
Take a nap!
What advice would you give to other parents with children who have disabilities?
My advice is to never stop fighting and advocating for your children. They need your voice. You are the best advocate for your child. Take it one day at a time and build a good support system around you. It is important that we all have someone we can reach out to if we need help or just a shoulder to cry on. Remember to take care of yourself so you can be whole for your child.
A version of this story originally appeared in the July 2020 issue of Washington FAMILY.