One of the core beliefs of The SWF is Belief in Progress. Progress does not happen naturally, like a weed growing by itself. It often takes an idea, sometimes one that comes to many people at the same time – when the time is ripe – when the world around you says, “Now is the time”. And even then, it takes energy, persistence, courage, and faith.
Many families facing SWS or any rare disorder know the experience of facing the heart-wrenching decisions that often must be made. Sometimes it is to face the thought of serious surgery for their child. Often it becomes the decision to have their child live in a safe and nurturing environment when they can no longer provide it in the family home.
This Branching Out issue brings the story of one family who faced these real-life challenges in the 1960s and 70s. Read about them with the knowledge things were not as patient-oriented and family-friendly as they are today. The challenges families face today can be met with so much ammunition that was not around 30 or 40 years ago. These are the stories we need to remember. While the tools may have improved, the emotional and rational struggles are still present. Using the tools at their disposal, families still must face their challenges. But small steps toward the goal back then resulted in whatever progress the disability community has made. Something for us to build on. This is a story of one family’s role in that progress.
Ann Nehrbauer of New York shares the journey her family has made since 1960. Her son Stephen is now 62 years old and they have been with the SWF since 1990. There are so very many situations to consider when deciding what is best for all the family, not just the person with Sturge-Weber. Because of Stephen’s age, now 62*, services including school attendance were very different way back then, as were any respite care or help for the ordinary family. Children with disabilities were categorized as either educable or trainable.
If your child was deemed educable then you might try to fight his way into a classroom. If the child was only trainable, good luck. If you could afford it, you might find a program to which you would have to transport him. The education laws came along rather late for Stephen as by the time he was 8, we were expecting another child. Stephen needed almost full-time attention and the four older children needed attention and care too. Our family was given no choice and even advised to institutionalize him. That had been advised at age 6 but it took us two rough years to realize it was the only way to preserve the family. Believe me, it was heartbreaking, but God is good, and we made it work the best we could. We visited him often in Staten Island (NY) at Willowbrook State School.
We took our other children in turn to visit him. As we did not have a car then, we used public transportation. It took us a little over two hours to get to Willowbrook from Westchester (NY). If we had one of the other children with us, they thought this was an adventure, (going on a train, subway, ferry boat, and bus). We got the NY Central train down to New York City (Manhattan, then a subway down to South Ferry, then the ferry across NY Harbor to Staten Island, and then a local bus to Willowbrook. We took Stephen home for a summer vacation and on the holidays because we always wanted to make sure he grew up knowing his brothers and sisters. Willowbrook was in a desperate situation, although they did have a school of sorts on weekdays using the education law monies to provide it to the trainable group. There were nearly six thousand people there then, children and adults.
Over those 16 years, I cannot count the times I looked back and saw he was watching us leave those grounds with tears in our eyes. Only by the grace of God did we endure, but more so Stephen endured those years. We had approached the public school at age 5, even though there was no law that they had to take him, just part-time. No luck. The Westchester Help of Retarded Children (now the ARC) had a small program but the family had to transport him to and from for a half day and we did not have a car then. We went to local religious agencies but were turned down as they had no appropriate programs. As it turns out, I was therefore put in a position of being a witness in federal court to testify to the disaster of Willowbrook and the need to close it and bring our children to their birth community homes with the support services needed to dignify their lives, not have them existing in a ward with 80 or 90 others.
In 1975 I joined other parents in a lawsuit against the State of New York to close the place and create community group homes. We advocated at all levels for services in the community and finally with the help of the Civil Liberties Union and Lawyers for the Public Interest, who came with us as a friend of the court. Much public attention at the time came from the newspapers and TV. We did succeed in getting the Willowbrook consent agreement and an injunction that broke the chains of the institution. Now, thanks to the internet, you can learn all about our struggle by searching Willowbrook State School. (Such a sweet name for a horrid place). Could we have included Stephen in the choice of moving out of our home? Stephen is in the severe range of functioning but has good speech – often with a lack of understanding but he surprises us at times. When we would bring him home for a vacation and it was time to go back to Willowbrook, he would resolutely repeat “I not go back” at which I would put on my serious voice and say “Oh yes, you will, just like your brothers and sisters go to school. You know we will come and visit you soon”. That was it and into his building, he would go. Would I have done anything differently so long ago? I don’t think so. As my husband put it “When the ship is sinking someone has to bail out”. That was Stephen because we had the responsibility of five other children to care for and no other help.
Now Stephen lives in a home near us with 24-hour staffing and goes to an OT program daily. He has lived there for 40 years with seven other people, happily. We visit him, just as we might visit our other adult children. His balance and mobility are declining with the atrophied left side and has hypertension and some medical problems found in the general population at age 62. He is now more accepting of disagreeable situations. He cannot read except for known advertising signs of many products. He knows the calendar and marks it for visiting dates or special events. His seizures have been much less frequent than in the early years when we changed medications often.
He cannot dial a phone but loves to answer it or talk when we call him. Usually, children grow up, become independent and self-sufficient, and move out of the nest. So it is not too strange that those who will not become so could move out of the nest too, but to a place that will supply protection, security, and a lifestyle to fit their individual needs, medically and in a habilitative environment whether their status is educable, trainable or profound. It was an Ann Landers newspaper article ages ago that alerted us to the Sturge-Weber Foundation. What a blessing.
Over the years I have called the SWF for information and most recently I had Stephen at the Center of Excellence at NYU (now an SWF CCN) concerning a tooth extraction on the area where the roof of his mouth shows the birthmark. I was advised to have it extracted under anesthesia by the Center. Few people at the Westchester Medical Center in Valhalla knew SWS. The tooth was removed without any excessive bleeding in a short 20 minutes, stitched, and the bleeding was controlled and stopped. He healed well. He has a very high pain tolerance and does not admit to any pain.
My husband and I always had the idea that the other children did not have the responsibility to care for Stephen but of course to always include him as family, visit him when we are gone. My husband George died nine years ago. Stephen thought a lot about it and only asked “Who will take his place?”. We assured Stephen his sisters and brothers would come to visit him and take him places. That satisfied him. He has always been accepted by our immediate and extended family. It is my firm belief that Stephen came into this world for a reason — a reason that did not appear to be within our expectations or planning.
But God is the Divine Planner and author of all good, so Stephen is here. Our family is grateful that through years of trials and smiles, Stephen is settled in a good home, in the community, is given good medical care, has friends (even a lady friend), and is valued. Admittedly, it has been a long road to travel.
*Reprinted from Branching Out July 2019
2024 Update | Thank you for sending the warrior story out. It is one more step forward in having Sturge-Weber known, researched, and treated. Stephen passed away in December. Having lived in a group home in Scarsdale, NY for 44 happy years where we visited him often and he visited us at our house, and the years at the Willowbrook institution are left in the past as only an unpleasant memory. ~ Sincerely, Ann Nehrbauer
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