The Challenges Of Raising A Child With A Disability: Interview Part I

When I recall the years growing up with a brother born with severe Down Syndrome, I often think how heartbreaking and difficult it was for my mother to take care of the rest of her children on top of taking care of Patrick, who at the age of 7, was like a baby.  I remember feeding him peanut and butter sandwiches while he stood in his crib, his hands holding onto the sides to balance himself while I gave him portions of the sandwich one pinch at a time. Back when I was a kid, there weren't any resources for children born with this serious condition, and children who were as disabled as Patrick, were often put into institutions.  I'll never forget the day when my parents drove him away from our family farm to take him to a hospital down in Little Rock for an operation on his heart. That was the last time I saw Patrick. Shortly after he left our home, my parents told my siblings and me that he had died before his operation. October is Down Syndrome Awareness Month, and I will follow up on this bit of my life next month. 

For this month's blog, I will be sharing interviews I've conducted with mothers who graciously accepted to share part of their life as a parent taking care of a child living with Autism.  The first interview is with Brita Darany von Regensburg who came to the United States from Germany in 1968, and is a mother of Vanessa (who you may have seen on The Scent Guru Group's Facebook Page).  Vanessa has Level 3 Autism, and is a now a grown woman.  According to Brita, she was not always ASD.  Here is her story:

Ruth:  You are a mother of a non-verbal autistic woman, Vanessa. Please tell us a little about her.  

Brita: She was diagnosed when she was 3, which was unusual since most pediatricians in those days did not know the symptoms.  She lost her speech when she was about 11 months old.  By 16 months, she did not say words anymore.  At first, I realized “why doesn’t she say apple? Or “opa” which means grandpa in German.  We were living in Riverdale, NY, and we were by the pool one day, and she suddenly screamed her head off...being afraid of the water and the pool. One of our friends who lived in the same building (who was a doctor) recommended we go to a doctor and so we went to Mt. Sinai where she was observed for a week and the doctor --Dr. Allan Arron (who is no longer living) came in every morning with a team of young doctors and they observed Vanessa would follow me like a little lamb, and that’s when they said the diagnosis was Autism and with symbiosis.

Ruth: What are some of your major concerns for Vanessa and her future?  

Brita: I have to live forever! I cannot die. Thank god I’m in very good health. What’s going to happen to her after I’m gone?  We (my husband and I) were instrumental in having the state open the first Autism group home for adults in Trumbull. We selected the care provider, RHD (Resources for Human Development) who is based in Philadelphia with branches in almost every state.  This is a house in a nice neighborhood with lawns etc, We had a mixed staff, and over the last 19 years we have collaborated with the agency, and the home is now a home where we have a very caring staff. After I am gone, my hopes are to continue to be able to have a caring staff (there) that will continue to do things with Vanessa that she is interested in doing such as interacting, so that she has a more normal life.  The house and the care of others are dependent on social systems like Medicaid.  

Ruth:  How do you see the need for change in the support of people living with disabilities such as Autism?  

Brita:  We need to make sure that the basic elements of good life for our children with Autism are maintained, and that the staff receives more thorough training with consistency, depending on what works or does not work for children who are verbal and non-verbal.  Increase in Medicaid support and continued SSI and Medicaid payments for higher functioning children or for those who have acquired skills that give them a paid job.  We need to raise the level of money that they are allowed to earn without loosing their SSI.  And, as a parent of a woman with ASD, I recommend other parents establish a special needs trust for their child.

Ruth:  You started an organization called FAP.  Can you tell us about it?

Brita:  I started Friends of Autistic People in 1997.  FAP’s mission is to advocate and educate on Autism:  Parents, public and legislators.  I realize that it is the legislators that have to get involved because there is also now free and appropriate education  provided by law.  A challenge we continue to face is after high school they “drop off the cliff” which is a common expression amongst parents who have children with disabilities. I left my business to spring into action to help change the system and to help make the lives of people like my daughter better.

Ruth: Your annual benefit is coming up on October 16th.  Can you tell us a little about it?  

Brita:  Daphne Oz will be our keynote speaker.  Daphne is a celebrity chef and TV personality.  Daphne agreed to do this because she liked our vision for FAP to establish a community of homesteads for people with Autism who can live and learn basic skills for animal care, horticulture and cooking.

Ruth:  Besides all the work you do for FAP, you are also a volunteer for other organization/s (such as the Flinn Gallery where we met). Can you tell us about your volunteerism?  

Brita:  I have helped curate shows at the Flinn.  It’s for inspiration and what I thrive on.  I like to meet different people and experience different things because if I focused all on Autism, I would not be happy.  My interests are like a renaissance person —a variety of things that make me happy.  Social Services, arts, politics, theatre and TRAVEL!  I like to travel to India and to South Africa to take off my bucket lists.

Ruth:  Since I advocate how scent can bring value to our wellbeing and have had some great Mindscent® exercises with Vanessa (who I know loves the smell of chocolate), I'd like to ask you about your own favorite scent memories. Can you share that with us?

Brita:  I have two: 1) Every time I go to India I know it smells like India.  Meaning, all the various  floral scents and burnt wood. 2) When I was a teen, I went to Barcelona and my host “Papa Juan” took me to the Montjuic, and on the top of this mountain which is a very nice fun place.  While ascending there on the funicular, there where big black pines almost touching us, and the heat combined with the scent of pine needles has stayed with me all my life!