About ten years ago, I was a divorced woman on a mission to be a mom. I have never been one to believe that biology makes the mom, so I was pretty open to the possibilities. I ended up fostering a 10-day-old premature baby boy who was born with cocaine in his meconium stool. My path to adoption was long and arduous; however, it was well worth it. Every time I look into my now 10-year-old son’s eyes, I melt. I am thankful! In this article, you’ll read nine things to look into when adopting a child with special needs.
Through trial and error, I have learned a lot about parenting a child with special needs. Not only was my son exposed to drugs in utero, but by the time the adoption was finalized when he was eight years old, he had multiple mental health diagnoses. To be specific, his diagnoses were post-traumatic stress disorder (PTSD), Attention-Deficit/Hyperactivity Disorder (ADHD), Disruptive Mood Dysregulation Disorder (DMDD), Depression, and Anxiety. My son suffered significant Adverse Childhood Experiences (ACEs) like mental, physical, emotional abuse, neglect, and/or household dysfunction. The term “ACEs” was derived via the Centers for Disease Control (CDC) study in which 61% of adults surveyed across 25 states had experienced at least one type of ACE. This is significant because not only are ACEs difficult for a child, but without appropriate support, the aftereffects can follow well into adulthood, showing up through physical ailments, mental health conditions, and behaviors.
So you are ready to adopt, and you are considering adopting a child with special needs. Here are nine things to ponder as you set out on this incredible venture.
1. Get Informed!
You don’t know what you don’t know. Ask probing and open-ended questions, for example, “What information is available with regards to the birth parents’ medical/mental health conditions?”
Inquire about visible and invisible disabilities. Not every disability is seen by the naked eye. Mental health, hearing deficits, and other physical conditions are not seen but require care and support for your child.
2. Take Stock of Yourself and Your Support System.
Adopting a child with special needs was the best thing that has ever happened to me. I had to have space, commitment, and willingness to be extremely vulnerable and uncomfortable. I was not ready. I underestimated what was required of me and what support looked like.
Take some time to build your support beyond what you have now. You will need more support than you have now. If you are fortunate enough to have family support, you are ahead of the game. But expect your circle to fluctuate. It will grow as you learn more about what your child needs. I sought out and gained the support I needed to effectively care for my son. Ask for help.
I learned patience that I cannot say I have ever had before, and I have the strongest bond with my child; I see his progress, his growth, and I love him so. There is something amazing about being a parent to a child in need and advocating for them. I have become a different person, more compassionate, empathic, and informed.
3. You Will Learn About Your Child.
While you will not make a diagnosis, you can advocate and explore your child’s disability. Talk to your child’s pediatrician, therapist, and any other specialist. If the diagnosis does not fit, keep pressing. Before the adoption, when I was my son’s legal guardian, the service providers only spoke about his behavior. I felt that there was much more to his behavior than just him changing from a “good kid” to a bad one. It just did not make sense.
I kept asking questions, and I kept pressing. Finally, someone acknowledged my questions and suggested we do extensive testing, which led to more concrete information and a treatment plan aligned with his needs. I learned two fundamental concepts, which may seem obvious to you, but were not to me in the midst of my son’s crisis:
1) Deescalate first. Behavior modification cannot happen during a crisis.
2) After the crisis, process your child’s feelings with him/her. You will gain these skills through many sources. Keep reading!
4. Work With What You Learn!
Once you learn all you can about your child’s disability, learn more! Find the organizations and nonprofits that support your child’s diagnosis. I connected with a few organizations like Mental Health America (MHA) and the National Alliance on Mental Illness (NAMI) to connect with parents who had children with special needs similar to mine. MHA of the Central Carolinas has a program called ParentVoice. My parent partner helped me find quality service providers for day treatment and intensive in-home therapy. She attends my son’s Individualized Education Program (IEP) meetings with me, ensures that I understand my legal rights as a parent, and provides ongoing support, access to training, and information to help me be the best parent possible. NAMI Charlotte has recurring support groups and free training that helped me become educated on children and mental health.
When the local Department of Social Services (DSS) denied my registration for trauma-informed training, I went to a neighboring county and attended an eight-week course. I found another half-day session through a local nonprofit organization in which I was essentially the only layperson in the course. I did not care. I needed to learn what was behind my son’s behavior and how to parent him. I benefited from these courses and became trauma-informed.
I have recurring sessions with my company’s Employee Assistance Program (EAP) counselor. Initially, I bounced things off of her to help me validate or adjust my thoughts about pretty much everything, from diagnoses to treatment to parenting. Now I talk about how to parent him best as he is well into puberty (those hormones are something else) and how to put myself first.
There is help out there, and most of it is free!
5. Document Everything!
Parenting is rewarding and hard! I disappointed myself often when I struggled to ask his service providers meaningful questions. I finally had this light bulb moment where I realized I could use simple tools I learned at work (in program management at the time) to start documenting as much as I could to better communicate with my son’s community of support. Here is an example of a template I used to help me collect my thoughts: The table above is a log of behaviors that soon showed patterns. I started learning what my son’s triggers were. It helped me, and I did not need to hold everything in my head. After all, we are super, but none of us have superpowers.
6. Get the Support You Need!
Check with the adoption agency about getting adoption assistance based on the child’s disability. In my case, the adoption agency helped me get adoption assistance through age 18 for my son for a nominal fee. There are specific criteria for assistance, which are based on state regulations. In North Carolina, my son qualified based on several factors, such as having been in foster care and having mental health diagnoses. I get a monthly stipend and about $2000 per year for approved specialized support. With this annual amount, he has had music therapy and attended a special program to help with developmental delays. According to the CDC, developmental delays are common for children with high ACE scores. These additional therapies helped my son catch up to his peers regarding socio-emotional skills, coping mechanisms, and behavior management.
7. Enjoy the Small Wins; They Add Up!
I have had to slow down to appreciate his growth. At age five, he was a gentle giant who opened the door for his classmates and told them to “be kind and stay in line.” My son’s behavior changed at age six. He went from loving and gentle to becoming violent; he hit, punched, and cursed. I learned that common trauma responses are fight, flight, or freeze. I had to learn how to parent a child with explosive reactions to everyday events like a schedule change. His therapist advised me that transitions would be a challenge for my son. She also helped me with tips and tricks to help him work through transitions.
As my son grows, so do I. Having a child with special needs means that YOU ARE ALWAYS LEARNING. My son is now 11 years old, and from time to time, he coaches me! Recently I was pretty stressed out, and he noticed. He took my hands and said, “Mom, it’s going to be okay. Now let’s take five deep breaths together. One, two, three, four, five. Now isn’t that better?” I cannot begin to tell you how proud I was of this kid who, just a few short years ago, had the hardest time with emotions. That was a WIN!
8. No Shame!
May is Mental Health Awareness Month, and I celebrate the entire month because my child has taught me to release my concerns about stigma. If I held on to stigmas, I would not be able to get my son the help he needed. If I held on to stigmas, I would not have a therapist to help me wade through the plethora of emotions I feel from one day to the next. If I held on to stigmas, I would not have this remarkable child of mine. I would not be renewed.
9. Self-Care is the Best Care!
One of the most important commitments you should make if you adopt a child with special needs is to prioritize self-care!
Self-care is so much more than a mani-pedi — the timing and type of self-care matter.
- Take care of yourself first! Just like on an airplane, you have to put your mask on first to help anyone else breathe- even your children.
- Take at least ten minutes a day to love yourself, whatever that looks like for you. Do it!
- Beautification feels good and can help, yet going deeper can really make a difference. Prayer, meditation, therapy, and respite are all types of self-care that may just help you re-energize and get back to parenting with a renewed sense of purpose and strength.
I meditate daily. I use the Peloton app to meditate, and typically, I fall asleep before the meditation is over. Ross Rayburn is the Peloton instructor that puts me to sleep every time. During one meditation, he spoke about being compassionate with yourself if your meditation does not go as planned. This concept applies to almost every aspect of life. It certainly applies to parenting a child with special needs. You will make mistakes, missteps, and stumble. Do not beat yourself up over it. You are making a difference in a child’s life who really needs you. Remember to give yourself grace as you traverse through the landscape of the world of special needs.
Adopting and parenting a child with special needs was a game-changer. I found renewed purpose and gained skills that I apply with my son and every aspect of life. The keys to success are pretty typical – patience, persistence, being curious, and gaining a strong support system – yet the experience is different from anything I could have ever imagined. Looking back, I was ill-prepared for the journey, but just like my son and his developmental delays, I caught up. We are quite the team! He recently made a video about social injustices and said he was learning to be like me. Proud mom moment. He is finding his way, and so am I. Together, we are unstoppable.
If you decide to proceed, find your village of support, give yourself a little grace, and celebrate the small wins. You’ve got this!
Do you feel there is a hole in your heart that can only be filled by a child? We’ve helped complete 32,000+ adoptions. We would love to help you through your adoption journey. Visit Adoption.org or call 1-800-ADOPT-98.Carla A. Carlisle is a published author, speaker, and child and mental health advocate. She penned her first book, Journey to the Son (a memoir), to prompt discussions about the often-perilous impact of trauma many children experience known as Adverse Childhood Experiences or ACEs. She is the adoptive mother of her former foster child who came into her life at 10 days old. Carla is a member of the Family Advisory Board for the Duke University/UCLA ASAP Center. She was selected as a 2020 TEDx Charlotte Speaker. Carla is a Question Persuade Respond (QPR) Gatekeeper and holds a Mental Health First Aid (MHFA) certificate. Carla is a member of Alpha Kappa Alpha Sorority, Inc. She earned her Bachelor of Arts in sociology from Indiana University in Bloomington, a Master’s of Science in human resources management from American University in Washington, D.C., and another Master’s in organizational development from Johns Hopkins University in Baltimore, Maryland.