By Shannon Walter
and Aran Walter
CBS News recently reported that nearly 100% of Icelandic mothers opt to terminate their pregnancy after their children are prenatally tested for Down Syndrome. In the very near future, Down Syndrome may be eliminated from Iceland entirely. As parents of an amazing adult with Downs, please allow us a chance to give a little insight as to why this may be happening.
John, who turned 20 earlier this year, is the kind of person you want to be. While his younger sister may not always agree, he is, the vast majority of the time, easy to be around. John is a joybringer and has taught countless people that you don’t need to be afraid of being who you are. Unconditional love is the only method of love that John knows because he sees the good in everyone.
When John was born, we were only told all the negative things about having a child with this “disability”. The doctor was required to inform us of all the possible things that could go wrong. He spoke to us purely from medically-based knowledge. It was scary. We knew enough to know the benefits and yet, after our doctor’s consultation, we were still scared.
Here in America, we are doing better, but support to parents with children/adults with disabilities is limited and understanding is in equally short supply. Our children/adults are more likely to be abused sexually, emotionally, and physically—especially if they are non-verbal. We did not receive funding for respite after John was 4 because the Wisconsin state funding was cut in 2001. We made too much money for federal aid but without help from our family we would have fallen into serious debt. Wisconsin is one of the few states that gave John adequate medical insurance, for which we are grateful, but that is not always the case. Being John’s guardians, we receive SSI and IRIS funds which is beneficial for the state’s financial position for a simple reason: it is cheaper for the state to pay us than to have him become a ward of the state. While these funds help with the financial costs, the emotional and physical tolls are ones money cannot alleviate.
Now that all three of our boys are over 18 (we also have non-verbal twins with Autism) we have the option to put them into a group home. However, privately run facilities are too expensive while their state-run counterparts are under-staffed with employees who are underpaid. In 2013, Shannon started taking classes offered to individuals by the state of Wisconsin in order to be qualified to work in a group home just to see what they were taught. The training she received on various forms of special needs—including the broad array of mental illness— took all of 2 ½ hours. In our opinion this training, especially for those who have never worked with this population of amazing people, wasn’t nearly enough. We understood on-site training was given but questioned how people and organizations could justify two days of instructing how to administer medication yet dedicate only 2 ½ hours to understanding and working with multiple people of vastly different needs. We also asked those being trained what kind of pay they receive: most would start at minimum wage. The job of caring for another person should be valued higher than minimum wage.
After that experience, we could not conscionably put any of our children in a state-run group home. This means we either need to come up with a very creative solution or choose to never be empty nesters. Though the latter is fine with us, it comes with concerns. We wonder if we’ll be able to take care of the boys when we are 80-years-old. Looking past this life, who will do it when we are gone? New parents of disabled children may not have a choice in placing their family member with special needs in a group home. If they are a single parent, too sick to care for them, or simply have things going on in their life that make it impossible to be the caregiver, they deserve a feeling of confidence that their family member will receive the care they need.
Please understand that parents around the world are making the decision to abort or abandon disabled children out of fear. It is a fear that our society has created about anything that may not be ‘perfect.’ If doctors gave them statistics on whether their child could become an addict, how would they feel? If tests could show heightened odds of being sexually assaulted as teenagers, what decision might parents make? If a doctor started talking to new parents about the likelihood of their child contracting diabetes, getting cancer, SIDS, or experiencing a violent death, would those parents be willing to enter a life with a child that might suffer? Where is the line drawn in the making of that decision? Why is it so important to give out negative information regarding Down Syndrome?
From our point of view, as parents of an amazing human being, it seems as though our addiction to the avoidance of sorrow and anguish overrides our willingness to enter into difficult circumstances, or even learn from times of pain and suffering.
While our lives may not be what we originally planned, we would not have done anything different if we had known then what we know now. And what we know is this: our son, John, displays the qualities that this world needs. The world would be a happier and better place if we could be more like John.