Children with severe disabilities make huge strides in adoptive home and give family’s life meaning.
The love and devotion of an adoptive family made it possible for two children with severe physical disabilities to accomplish surprising success and change the lives of their family forever. Adoptive parents Marilyn and Charles Matthews have devoted their lives to helping their children with special needs accomplish more than doctors ever imagined possible
The Matthews, from Union, West Virginia, adopted Bo at 18 months in 1985, Sarah as an infant in 1988 and Brandon through the CAP photolisting at age 4 in 1995. Both Bo and Brandon had severe physical needs that required around-the-clock care. Their doctors told the Matthews that the boys would never be able to communicate or hold meaningful relationships. The couple took the time to unlock the children’s true potential when many others had given up on them.
Marilyn and Charles have seen their child Bo compete in and win a school-wide spelling B, both sons completely overcome daily seizures, develop a passion for music, live well beyond the doctor’s predictions and love others more deeply than most people can understand. They have been amazed by their children’s accomplishments and say, despite the many challenges, the experience gave their life direction and a belief in the impossible.
Marilyn and Charles were in their 40’s when they first adopted. They say they felt like complete “misfits” as Yankees from the north who moved to the remote mountains of West Virginia and adopted multi-racial children with special needs. They say some of their family and friends thought they were crazy to take in children unrelated to them with such significant health challenges. Not many understood them, in particular many of the children’s teachers and doctors, but the Matthews found their life’s meaning in adoption.
“It gave us a different focus, a hope that things could happen that we never expected to happen,” says Marilyn. “I could see them growing. It was wonderful to see what they were able to do with what we were able to give them. I never had an experience before like that in my life, it gave us purpose, hope and the love was like no love you would get anywhere else.”
Earlier this year, on May 2, 2013, their son Brandon passed away unexpectedly at age 22.The loss was devastating to the Matthews family. Although they say they may never fully recover, they feel so grateful to have been part of Brandon’s life. “Adopting our son was one of the best decisions we ever made. He was a total delight in every way, in spite of his many challenges, he far exceeded all expectations in every important way. We were so blessed to have found him,” says Marilyn. Despite times of pain and hardship, they explain that adoption is the best thing they have ever done and want to encourage others to do the same.
The Matthew’s Journey to Adoption
Marilyn first discovered her passion for individuals with disabilities as a college student working with women who lived in an institution where their severe physical needs were met. “After the initial adjustment, I just loved it,” she says. She then decided to pursue a degree in special education and taught children with a variety of learning problems, including Autism.
Marilyn had a birth son (now in his 40’s) with her first husband. She then met and married Charles and they settled into a remote home in the mountains, devoid of modern conveniences like electricity. They used kerosene lamps, gravity fed water and received messages through friends instead of a telephone. Older and unable to conceive, Marilyn and Charles decided to foster since they still had a love for children.
They connected with one of their first foster children through Marilyn’s job as a teacher’s aide in a private school for children with Autism. Marilyn became very close to a child named Candy who was no longer with her birth family and was about to be placed in an institution. Marilyn says she couldn’t bear the thought of Candy being all alone. At the time, it was believed that children with Autism were unable to bond and it did no use to show them affection. Marilyn says, “I did it wrong, and it worked. I treated her just like any other child and she responded to it”. The Matthews worked with the state to bring Candy into their home, but because of the laws at the time prohibiting transracial adoption, the state ultimately found another family for Candy.
That’s when the Matthews decided they wanted to adopt children with special needs. “We thought we could offer something to disabled kids who might not be seen by most people as adoptable… We loved our foster children and hated seeing them go; It was heart wrenching. We wanted someone who could stay with us and be part of our family for good.”
Soon after, the Matthews found their son Bo, now 29, through West Virginia’s photolisting when he was an infant. He had suffered a brain injury at 4-months-old. “We learned from Bo that there was so much inside him you couldn’t see from the outside,” says Marilyn. “The Doctors would tell us all these things: ‘he won’t know you’, ‘his EEG is grossly abnormal’, ‘he has a severely damaged brain’, etc. They weren’t lying; they were telling us what they believed. But even if it was true, we didn’t care, this is a person, and we wanted to give him a family.”
Marilyn and Charles worked tirelessly to advocate for their children in school and give them a normal life. Using her experience as a teacher, Marilyn developed an education plan specifically for Bo which allowed him to participate in regular education classes. Charles went to school with Bo as his aide until the school was able to provide one. Bo was above average intellectually, but the school was not equipped to provide the services he needed to participate. His family filled in the gaps.
Even though he is limited in his ability to communicate verbally, Bo loves academics and desired to participate in the school’s spelling B in 6th grade. Marilyn developed a way for Bo to select multiple choice answers instead of spelling words verbally. Many of the children actually found this method more difficult because it required identifying subtle differences in the spelling of words. Bo was able to compete in the school-wide spelling B and he won first place! The other children gave Bo a standing ovation and even the principal admitted he never expected Bo to win.
It was accomplishments like this that the Matthews say kept their life exciting and encouraged them never to give up.
After adopting Bo and their daughter Sarah, the Matthews attended a local “adoption party” where they found Brandon’s picture in the CAP Book (Children Awaiting Parents’ first printed photolisting). They say they kept going back to Brandon’s photo. “It was his smile; his whole face was one big smile. He had this sparkle in his eye… there was the sense that there was a lot going on, on the inside,” says Marilyn. Charles remembers thinking that Brandon "had so many strikes against him" that his chances for adoption would probably be extremely slim. Charles says he felt strongly led to take the chance that their family could give this child a home worth having, and a life full of love and joy. Brandon’s description said he was blind, but the Matthews suspected that he wasn’t blind from the photo and it turns out Brandon instead had severe nystagmus- involuntary, rapid eye movement. Eventually, Brandon would learn to control the nysatgmus and his vision improved.
At the time that the Matthews saw Brandon’s photo, he was very medically fragile. He had developmental and physical problems as a result of being born prematurely. He had to stay at Johns Hopkins hospital in Maryland until his 4th birthday when he was considered healthy enough to be placed for adoption. As soon as he was physically able, the Matthews took Brandon to their home in the mountains. They learned to provide complicated medical care, including tube feeding, and eventually moved closer to town to have better access to modern amenities.
Brandon’s doctors at Johns Hopkins warned that he may never make it to his teens, but the Matthews did not let anything diminish their resolve. They discovered what their children were interested in and nurtured their talents and abilities. Brandon loved music, so they exposed him to musical toys and instruments. Music became his life.
Marilyn says, “We had to fight so many battles to help them have a normal life. Instead of just putting them in a bed somewhere (like some others might have done), we did everything we could think of, we took them bowling, to the beach, water slides, sledding. We tried to give them every normal experience they could safely have”.
The Matthews have found writing and speaking about their experience helpful in coping with Brandon’s recent passing. Marilyn reached out to CAP to share how adoption through the CAP Book enriched their lives in spite of their recent pain, “We miss him terribly but are so thankful to have had the opportunity of so many wonderful years as his Mom and Dad.” They hope their story will educate and encourage others to open their homes to waiting children with special needs.
Essential Qualities for Parents who Adopt Children with Special Needs
Through their experience, the Matthews found that there were certain attributes and characteristics that helped them be effective adoptive parents. Some of these characteristics were learned through experience, some they identified as important personal strengths as they got to know themselves and their ability to parent.
“You have to be a fighter, someone that’s willing to stand up and say ‘this is wrong’ and ‘this should be changed’,” says Marilyn. She admits that this did not come naturally to her. For example, the Matthews had to learn how to advocate within the school system and be their children’s voice. “(Advocating) is not in my nature, but I became a mama bear with my children,” Marilyn says.
A sense of humor and a child-like approach to life also helped the Matthews to not take everything so seriously and roll with the punches. Marilyn says her youthful outlook and ageless sense of humor kept her from worrying about how things looked to others. She realized that appearances are not important. “That can come in handy when you’re trying to meld a whole bunch of people together into a family. Kids come with a past and it’s hard to get their past to meld with your past into a present that makes sense for everyone,” says Marilyn.
An awareness of one’s personal strengths and limitations allows adoptive parents to make a lasting, effective impact in the lives of others. The Matthews found that knowing themselves and discovering what they were capable of helped them be better parents. When others would marvel at their ability to parent children with severe physical disabilities, the Matthews would explain that this is their unique skill, but there are a lot of things that other people can do that they cannot do. “The profoundly disabled appealed to us and we were able to make a difference in their lives… It’s just a matter of trying to find out what you can do and doing it” Marilyn says.
Advice for Others Considering Adoption
“Our story has many parts... some wonderful... some devastating... the main thing I would like to tell prospective adoptive parents it to not discount or be afraid of the severely disabled children... Although we had to fight along with them through many challenges, and ultimately lost our son to complications of his disability (cardiac event was the reason we were given), adopting them was the best decision of our lives”. Marilyn believes that if families take the time to understand children with special needs, they will discover that they are wonderful people who have so much to offer, “I would like to encourage people to consider them as a potential part of their family.” However, she urges parents not to expect overnight success. Adoption, especially special needs adoption, is a big adjustment with many ups and downs. “If you can stick it out through the initial trauma, they are worth it,” she says.
The Matthews say it’s also worth considering what your climate is like before adopting. They realized the importance of being aware of the community’s attitudes towards adoption and diversity after their daughter Sarah struggled with ignorance and racism at school. Marilyn says they would have attempted to live in a more diverse community if they knew how hard it would have been for Sarah to feel secure.
The Matthews would also like to tell prospective parents that there is a lot of support available to adoptive families if you know where to look. Marilyn says she stumbled upon assistance (like a pool donated by Make a Wish Foundation) by connecting with other adoptive parents, “I found out more from parents than anyone else about where to get help.”
According to the Matthews, adoption totally changed their lives and made them a family. With a new purpose, even their careers developed meaning and they thrived as a family. “We were trying to figure out what we were supposed to do- this was it, and it was an amazing life,” says Marilyn.