I had the privilege this month of interviewing my parents, Joe and Margie Prenosil, who have been special needs adoptive parents for 30 years! I hope you enjoy the insight and wisdom they have to share from their many years of experience as they have loved and cared for my siblings.
How long have you been parents? How long have you been adoptive parents? Was it always your intention to adopt?
We have been parents for almost 50 years, and adoptive parents for 30 years. As far as our intention to adopt, after 4 years of providing foster care, it was something we started to consider. At that point in our foster care services, a baby came into our care who no one wanted to adopt because of the complications he had with severe cerebral palsy. We decided to adopt him and thus Nicholas became our first adopted child.
Because you have specifically adopted children with special needs, what challenges/obstacles did you face early on? And, what resources did you find the most helpful for navigating them?
Our challenges started with finding what resources were available to us from our county and state as well as various specialized clinics. The first thing we found helpful was to expand our foster care work to also include our county. This step greatly increased our learning curve regarding what resources and connections were available locally that were most beneficial for each obstacle that came our way.
The first obstacle we had was learning all the medical information needed to treat and comfort the children we cared for. It was a medical education that took many years for us to feel like we knew what we were talking about regarding various medicines and adaptive equipment.
Our second obstacle was identifying where to acquire handicap equipment and transportation. The most useful resources we discovered while working with individuals who helped foster parents in our county.
One final obstacle, but one that benefited us the most in subsequent adoptions, was learning our state referral chain for requesting assistance. In our area, we were to go to our county Case Manager first before requesting services from the state Adoption Assistance Specialist.
What were some of the things you learned from parenting your biological children that helped parent your adopted children?
First was realizing there was a developmental difference between typical children and special needs children. Once the differences were identified, it was a matter of determining whether to seek advice or accept the condition and adapt from there.
Daniel, our fourth biological child, had some special needs so parenting him provided a bit of a transition gateway for our adoptive special needs parenting skills. Daniel was dyslexic and hyperactive. Sometimes his difficulties were too much for others to handle. Because of his struggles, we often had friends and family ask whether we were going to bring him with us when we came to visit. Daniel took special needs classes in high school and Margie did most of his reading to accommodate his Dyslexia.
“…be ready to acquire ‘new’ skills for yourself. “
What were some new parenting strategies you had to learn after adopting children with special needs?
When requesting services or equipment, we learned we needed to share the worst incident instead of the best-case scenario for that child. Also, we learned not to assume that we would always be available to provide the service or help and to also build in requests for helpers.
We also learned to hire PCAs (Private Care Assistants) as teens who came from large families. In general, these youth were already trained through regular family life to care for their siblings, so all we had to do was additional care training that met our child’s specific needs.
Another strategy we learned was to fully understand what your school district does and doesn’t provide. Two of our children were able to receive in-home services from the school district because of the severity of their conditions.
How have you managed family life, church, school, extra-curricular activities, and respite time over the years? Do you have any advice for other adoptive families of children with special needs on how to best juggle these demands?
Family Life: We didn’t adopt children older than our birth children, thus we limited the competition. Our adoptive parenting years started as our birth children were starting college and lives outside our home. Full-time help came over a period of years. First, we hired a full-time PCA using a waiver and then eventually were able to add our youngest son on as hired help. When our son left for college, we were able to hire a full-time PCA that stayed with us for thirteen years. She helped to coordinate other PCAs, cover homecare when we needed to assist a child away from home, as well as respite time for us. She left after the deaths of two of our totally disabled children.
Since then we have relied upon young adults from 16-20 years to fill the gap. Plus after the decrease in PCAs and Margie heart attack, the county helped our ability to work with an agency to hire and maintain staff by reclassifying our home as a group foster home. We are the only one in the county.
Our church and extra-curricular activities center around family members which extended to include PCA youth (16+) and their families. Through the church, stay connected to a larger community as well as develop relationships with families we know well and feel good about hiring to do care in our home.
Because we had a full-time PCA/agency, we could coordinate yearly getaways for ourselves but for about three years when we were between agencies, we were unable to get any time away.
Advice to parents: It is impossible to duplicate what we have done to the letter. Stay flexible. We learned that we needed to change as our children’s needs changed and as well as determine what appropriate assistance was necessary for us to help each child with specific needs.
When starting this type of journey, a couple needs to assess whether their current family can accept and contribute towards bringing in a new family member. Second, they need to take into consideration this child’s care may be a lifelong commitment and both parents need to be committed to this child, not just one.
Next, you should assess what financial and community support is available to you if you adopt. Any financial support provided to care for a child should only fill the gaps for that child’s care and should not be seen as another source of income. When you put income before the care of a child you are not letting God do his work. First, seek the Kingdom of God, and then everything else will be provided. We found this to be very true.
“…be willing to accept a child saying, “I love you” as meaning “Do you love me?”“
If a family was interested in adopting a child with special needs, what advice would you want to share with them based on your 30+ years of being adoptive special needs parents?
First, you need to consider your motivation for adoption. If you have a perceived idea of what you want a child to become without understanding all the baggage this child has acquired and will continue to work through in your home, stop. You will be disappointed. Understand that first, the child will educate you by their behavior, life experiences, and what they want (which is not always appropriate). They will lead by showing you what triggers their actions, and you must observe before acting. You will probably need professional help in understanding the underneath behavior and be ready to acquire ‘new’ skills for yourself.
Children in the foster care system have learned to defend themselves when everyone else in their lives has failed them. You must be willing to struggle with them as well as be their spokesperson because they may not have the words to describe what they are feeling. If they are in trauma, they may take a long time to change, if ever. Also, be willing to accept a child saying, “I love you” as meaning “Do you love me?”
After considering the above questions we then suggest you again consider why you would want to adopt. Here are two reasons we have found provided a stable foundation for us as we have adopted. First, a real desire to be faithful to the child we are adopting no matter what. We may not change the child we adopt. Ultimately God is in charge of change and we must be willing to let God take the lead in this area or be okay if change is not in His plan. Second, we must be able to accept our failures, limitations, and frustrations. Every day we review our day with God and choose to be happy with what the day afforded us. We ask God for guidance, change what we can, and then we are joyful about the journey and the amazing people He has allowed us to share our lives with.