Adopting a special needs child is not for the weak of heart; it demands strength, faith, compassion and a lot of support, medically and emotionally. Because of the additional factors surrounding a special needs child, it is important to know the resources that are available. It is also important to acknowledge that the information you receive about your child, prior to the adoption, may not all be accurate, complete, or up-to-date.
This article will discuss adopting a special needs child from all perspectives: what are special needs, how is that addressed in a home study, how parenting and loving a child with special needs may look different, as well as feelings that may be incurred when parenting and adopting a special needs child.
When you hear “special needs” what comes to mind? Growing up, I only thought of special needs as a reference to someone with a physical disability. But now, because of my education in social work, working with autistic children and the adoption system, I know that “special needs” encircles so much more than that. It encompasses many diagnoses, some of which include Down syndrome, autism, learning disabilities, or a result of prenatal drug exposure. Some countries even label children over a certain age as special needs.
Susan Kuligowski, stated in her Adoption.com article, “While some children with special needs may face what many people would consider ‘traditional’ physical, emotional, or mental developmental delays or challenges, that’s not the case for all special needs children. And while many people may equate special needs as requiring future and long-term special education and therapy, that’s not always the case either. Of course, in many cases, special needs can and does mean long-term dedication and commitment associated with caring for a lifetime of challenges no one person should have to face alone.”
Before you begin the adoption process, it is very important to realistically discuss if you and your family are open to a special needs adoption, and to what extent; it is important to realize it will impact all members of the family. It is also important to consider if adopting a child of another race, will he/she be accepted by grandparents? It can be said that all adoptions come with some form of “special need,” whether that is developmental delays, living in an orphanage, or dealing with the trauma that comes with adoption.
When you are completing your home study for adoption, one form you will most likely fill out for the agency is a special needs checklist. This checklist is to determine what special needs you are willing or not willing to accept in a child. It will have a lengthy list of special needs, and you will need to go down the list and determine what, if any, needs you are capable and comfortable with your adopted child.
This is a very important and very hard document to complete. It was emotional for me to go down the list and select “needs” that would eliminate a child. But, it is most important that you are totally honest with yourself so as to be fair to your family and the adoptive child. As an adoptive mother, but also a social worker who completes home studies for families, I do have families who say they are comfortable with any special need, and I do make sure they understand the ramifications. I am not trying to discourage them but want them to be fair to their family and, most importantly, the child.
If you have family or friends who are in the medical profession and there are medical conditions of which you have questions, ask them. Online research can also be very informative. After completion of the special needs checklist, your adoption agency will match you to files of children that match it as close as possible.
When you receive a file for a child, it will be a very exciting and also overwhelming day! You usually will have a few days to review the information about the child to determine if this is the right match for your family and want to “accept” the referral and proceed. This is a good time for a doctor to review the file and give you feedback. Many children’s hospitals have international clinics that will review referrals for families.
Learn as much as you can about the referral information listed. It will help you to be the best prepared and make the best plan for moving forward with your child.
So now you have completed the adoption process and are now a family. What happens next? What is the best way to parent a child with special needs? It is important to remember that the information you had received previously to meeting your child may be out-of-date or not accurate. It is your responsibility as the parent to have your child evaluated so all needs are identified, and a treatment plan can be established. If it is an international adoption, the International Adoption Clinic at a children’s hospital is a great place to start. You can also schedule that appointment before the final adoption and thus not have a long wait after getting home as a family.
During this time, it can be medically overwhelming. You may be told that your child has a new or different diagnosis than what you thought, but it is your role to be the parent. It is your role to seek out medical professionals, to rely on their information, to seek support groups if necessary, and most importantly, to love your child.
You need to be your child’s biggest and best advocate. Appointments and phone calls are time consuming and disruptive, but necessary. You know your child best and don’t ignore your “mom gut.” If you feel something is not being evaluated based on what you are seeing with your child, share it with the doctor. If something isn’t working or a medication isn’t working, share. If a doctor isn’t listening, visit another one that will give you the time to discuss your concerns.
We adopted our son from China just over a year ago. In the past year, he has made many, many gains. However, he is still developmentally behind. Before we traveled, the information we received stated that he had CHD (Congenital Heart Disease), so we had prearranged a cardiologist appointment for him when we got home. We also had an appointment scheduled at the local International Adoption Clinic at a local children’s hospital. We received good news from the cardiologist but were told by the international clinic doctor that he was far more behind than a typical child his age from an orphanage.
At age 3, the age we adopted him, he was not walking, not talking, and his primary source of nourishment was from a bottle. We expected developmental delays due to his hospital stays and his life in the China orphanage, but the extent of his delays kind of took us off guard. However, as much as we were prepared for unknown obstacles, the fear he expressed upon meeting us was soon replaced by an impish smile.
We have linked him with many therapies, which include speech, occupational therapy, feeding therapy, and physical therapy. Initially, we tried to keep his world small, focused on family, while he learned us. Several months later, we linked him with the developmental preschool with the local school system. The local developmental preschool is a wonderful resource for children, ages 3-5 years old. If a child qualifies, they can attend a select preschool program which offers a very low student-to-teacher ratio and provides various therapy services through the school corporation free of charge. Micah receives occupational, physical, and speech therapies weekly at his preschool. They will also collaborate with outside therapists that the child receives outside of the school environment.
He has been with us for over a year now and is revealing his mischievous personality. He is definitely now a toddler, although probably still two years behind developmentally. While he is now running around and has made a lot of progress physically, he is still nonverbal. We are working with the school system and a private speech therapist on different forms of communication.
Another thing that also took us off guard was his sensory needs. As I stated earlier, there may be additional needs that are not known when you adopt your child. He craves sensory input and gets very overwhelmed in loud settings or around a larger group of people. We are working with his occupational therapist on tools and tricks to get him the sensory input he needs.
Now that he has been part of our family for over a year, we are starting the diagnostic process for autism as he is showing many traits that are prevalent in autism. We were waiting to see what traits might go away with time due to his institutionalization, but not enough have “disappeared.” Knowing that early intervention in facing autism will provide the best outcome, we want to get him the resources he needs to have the best life.
So, expect the unexpected because it may happen. You will not love your child any less, but it can take its toll financially and emotionally. We expected CHD and developmental delays, but we were not prepared for autism. We wouldn’t change Micah for anything, but it was just another issue to address. A quote I saw online stated, “Autism is a journey I never planned, but I sure do love my tour guide.”
In addition to loving your child is the importance of taking care of and loving yourself. What feelings will you experience when you adopt a child with special needs and how will you handle those feelings?
You will feel overwhelmed. You will feel tired. You will feel like you can’t do it. You will need your tribe.
You will feel overwhelmed when your child pushed your last button, and it’s been a long day. You will feel overwhelmed when going to weekly therapies instead of getting your child involved in extracurricular activities.
You will feel tired about the never-ending pressures of doctor appointments. You will get tired about the recommendations of others and other professionals on the best action plans for your child.
You will learn to love the small things and celebrate any small gains you see in your child.
You will feel like you can’t do it some days. Some days will feel very long, especially days when you compare your child to others, even when you try not to compare.
You will need your tribe, your support system. You will need other parents who are going through the same thing as you. You will need these people to vent and understand when you just need to talk.
This has been something that has been a learning curve for me. I have a hard time asking for help. I have a hard time sharing my feelings with others. I tend to hold it inside. Our adoptions have helped me realize that I need others who have been there and understand. The families we traveled to China with from our agency still talk and message each other regularly. Our church also has an adoption group that has been very helpful.
There are also many online resources for parents. This can include Facebook groups and forums on Adoption.com, specifically on adopting a special needs child.
When frustration and time-issues arise, remember that self-care is important for you and your family. It is important to indulge in yourself from time to time. It is important to not lose yourself as a person. Running from doctor appointment to the next therapy, it is easy to get into the mode of being “Micah’s mom” vs Meghan. It is important to have a hobby or something you enjoy to get away when you start losing your identity.
We do not live in a void; our feelings are influenced with those of other people: people, family, friends, and even strangers. They will voice their opinion and give “advice” on your parenting style. But this is even more true when parenting a child with special needs. Everyone else seems to think that they know what’s best for your child. Even strangers at the grocery store will act like a professional, even if they don’t have children. It is your job to stay strong, not to take any comments personally, and to stay your child’s strongest advocate.
George Santayana stated, “Knowledge of what is possible is the beginning of happiness. This is what it means to parent and adopt a special needs child. It means to love when it is hard. It means putting your children before yourself. It means going out of your way to get them any resources they may need. Knowledge of knowing what is possible for your children, reaching their potential, and helping them live their best lives.”