What every mom wants for their child

My 23-year-old autistic son Keegan is a loving, caring, compassionate man who loves to laugh and “make good choices” (his words). He wants to make those around him smile and be proud of him. He is also vulnerable, overly trusting, naïve and desperately wants to live a “normal” life.

My fears for Keegan’s future began when he was about 15 years old. Whenever I passed a homeless man, my stomach tightened and I asked myself – could Keegan end up homeless? Unfortunately, I knew the answer.

When we were first told that Keegan “had autistic tendencies”, we asked his preschool teacher to please never use that label when referring to Keegan. My husband and I used to refer to it as the “A” word. Keegan was our first, so precious and beautiful, we couldn’t accept the fact that he may have a lifelong disability. At the time I naively thought that if we accepted he was autistic it would mean teachers and caregivers would let him sit alone in the corner and rock.

But denial never works.  After a couple of years and some gentle nudging from his school teachers we came to accept that Keegan was indeed autistic and that through therapy, supportive teachers and a loving family he would not be left to sit alone in a corner, but be encouraged to grow into his potential.

Life took a turn I was not prepared for – hours of weekly therapy schlepping a toddler and an infant along. Doctor visits, medicine changes, and school IEPs  were full of what Keegan “couldn’t” accomplish. The disappointing reality came in bits and pieces and sometimes in huge chunks; that Keegan would not live a life like my other two children. His independence would be limited and he may need support for the rest of his life.

After visiting Casa de Amma, a supportive residential community for adults with developmental disabilities that has an indefinite wait list for new residents, I knew I had to join others in creating a place like Casa de Amma.  During my visit to Casa de Amma  I saw a place that would fit Keegan’s needs. The residents took pride in showing us around their apartments full of items that were special to each individual. I saw parents with a peaceful look on their face, enjoying their adult children. I experienced a staff that spoke about the residents with interest and love.  I joined the team to create a place like Casa de Amma called Villa de Vida.

I have been asked “why not have Keegan live at home, a group home or in an apartment and bring support to him?” Every parent wants to see his or her child live a fulfilling and meaningful life. I want to see that for Keegan. Keegan wants that for himself. He wants a place of his own and a life of his own. Group homes and supportive living are isolating and have potential for abuse and neglect. Keegan’s siblings are more than willing to take care of Keegan. When Keegan’s brother was making his decision of what college to attend he said, “I just want to go to a good college so I can get a good job to make enough money to take care of Keegan”. When I told him that my husband and I had that figured out, his response was, “you aren’t going to be around forever”.

Siblings often feel burdened when they think of the future of their family member with special needs. I want Keegan’s brother and sister to have a relationship with him that involves holidays and family dinners, not as caregivers. And back to the observation that my son made that we won’t be around forever…wouldn’t it be wonderful to know Keegan is living in a place where he can feel safe and loved for the rest of his life? I would then have that peaceful look I saw on the faces of the Casa de Amma parents!

Could Keegan end up homeless? Without the appropriate support he needs for the rest of his life, the answer is yes. This is why I am so passionate about Villa de Vida, for myself and all the families that want to see their developmentally disabled family member live a full life that includes friendships, work and recreation – a safe place with a respectful, loving, compassionate staff.

Denise Longo is the mom to 3 children:  Keegan (24), Griffin (22) and Carina (18).  She has taught elementary school and parent education classes. She now focuses on nonprofits and her church. She is the co-founder and secretary of Villa De Vida. Villa de Vida was was founded in response to the growing demand for permanent supportive housing for adult children with developmental disabilities of which the majority of them are under the care of aging parents. It is located in Pasadena, California.

Editor’s note: Housing is a critical issue for autistic adults. Many parents worry for the future of their children. Supportive housing is only one option. There are many others. The Art of Autism seeks first-person accounts from parents and autistic people about housing and employment options. Denise Longo has given me permission to reprint this article. It originally appeared on the Villa de Vida website.