Until recently, I didn’t know much about autism or, for that matter, about other intellectual and developmental disabilities, or IDDs.
Most of what I thought I knew about autism, for example, came from watching the classic Oscars-winning film Rain Man almost 30 years ago, when autism was a relatively new word to many people.
In the heartrending movie, I was fascinated, even charmed, by “autistic savant” Raymond Babbit, brilliantly played by Dustin Hoffman.
I was amazed at Raymond’s extraordinary mathematical prowess, his phenomenal memory and was pleasantly surprised at and perhaps lulled into a false sense of solace, even hope, by Raymond’s high-functioning abilities.
Until recently, I didn’t know that, at most, only an estimated 10% of individuals with autism show unusual mental abilities.
I also didn’t know that most doctors consider autism “a lifelong developmental disorder,” although there are reported cases of children who have recovered.
Finally, I was blissfully unaware of the unfathomable emotional and steep financial toll parents and families of such children suffer — sometimes lifelong.
No, I didn’t know very much at all about Asperger Syndrome, other Autism Spectrum Disorders (ASD), and Down syndrome or about so many other severe intellectual developmental delays and physical disabilities afflicting children and adults.
That is until I met Cho Law, a licensed Child Care Administrator, who not only seemed to know quite a bit about such disabilities and disorders, but who obviously had a very personal and passionate stake in this subject.
That is until, at Law’s invitation, I visited Hope House of Austin (Texas) north of the capital, at the outskirts of the small town of Liberty Hill, where Law is Program Administrator.
That is until I met a dozen or so adult “residents” at the “House” surrounded by some very special caregivers.
That is until another dozen or so children captured my heart and brought tears to my eyes one Sunday afternoon at the “House.”
To be precise, Hope House, a complex of charming, well-kept buildings peacefully tucked away on five tree-covered acres, has 29 “residents”: 15 adults and 14 children.
To be even more exact, when I visited, Hope House had 28 residents.
You see, Tom, now 42 and blind and deaf and a resident of Hope House for 42 years — minus two weeks — was in the hospital in town at the time for medical treatment.
Tom was brought to Hope House by helicopter at the tender age of two weeks, in a shoebox. The same shoe box his parents had placed the newborn baby in when they decided they could not or would not take care of him.
Fortunately, Rose McGarrigle, a World War II German emigrant and mother of five, accepted Tom, who was later diagnosed as suffering from Streeter’s Dysplasia, with open arms.
Rose had just founded what would become Hope House, a place where children — and, later, adults — with mental and physical disabilities could find a safe, secure and, most of all, loving home.
That “loving home” was first Rose’s garage, then her own home where she gave room and board to several children — mixed with her own children — then a “fixer-upper” donated by a kind neighbor. Finally, when the number of children just outgrew all available space, “Hope House” in Liberty Hill was born.
Just like Tom, several of the now-adults have been at Hope House almost their entire life.
Take Sam, sitting quietly against the wall, but obviously at peace and interested in the activity around him. Sam is now 46. He arrived at Hope House when he was six months old.
I visited with Phillip, who was helping to make soap bars to be sold later at a local market. Phillip arrived at Hope House when he was in his early 20s. Phillip is now 56 years old.
Such crafts activities, “working,” are essential pillars of the care and attention Hope House residents receive, in addition to tending to plant beds, participating in outings, games and other stimulating activities — even a Christmas “5K” event.
When I first visited Hope House, I did not get to see the children. Considering their disabilities and health conditions, I was surprised to hear that they were all at school.
Hope House children, ages 5 to 21, attend school at local Liberty Hill Independent School District schools equipped with special education curricula.
But the folks at Hope House do not forget the children while they are in school. I watched two dedicated ladies, Consuela and Susie, prepare well-balanced lunches in Hope House’s ample, yet cozy kitchen (below) — lunches that would shortly be taken to “their kids” in school.
Accompanied by Cho Law, I visited the children on a Sunday afternoon: boys and girls of all ages, all races and ethnic backgrounds, all afflicted with some disability, all displaying various levels of functionality — but all beautiful.
There was Brittany, a 14-year old girl, sitting on her bed in one of the charming, cheerfully painted Hope House bedrooms, sporting her protective headgear. Brittany is non-verbal but wise enough to tug at Law’s sleeve asking for a piece of candy.
One little boy was curled up in his bed, resting, while other children were engaged in activities, closely watched by devoted caregivers. I was told he loves playing with keys. Another young boy was fascinated by my neck chain and insisted on touching it. Other children had similar specific interests.
Soon their attention was diverted and excitement rose as the caretakers announced it was time to go and play outside.
The parents of one young boy at Hope House visit him regularly and feel blessed that there is a place such as Hope House that can give their son the specialized care they could not provide for along with the affection that supplements their own love for Will.
Please watch the video below, where Hope House Executive Director David Gould explains what Hope House is all about and the parents of young Will talk about one of the most excruciating decision some families have to make.
Will is one of the more fortunate children. Many children — and adults — at Hope House have not seen their parents or loved ones ever again since they arrived at the House.
Some were placed at Hope House as toddlers by parents and family members who could no longer — financially, emotionally or medically — take care of them in the manner their disabilities require.
Others have been removed from their homes by the State because of negligence, abuse or neglect and placed at Hope House.
No matter what age, whether five or 50, no matter how or why they arrived at Hope House, to the staff they are all “their kids”
They are all Cho Law’s kids, the Hope House Program Director with 35 years experience in the field who has been at Hope House for two years.
They are all Ginger Hernandez’ kids, many left in her care when the founder, Rose McGarrigle, asked her to take care of “her kids” just before she passed away in 2003. Hernandez continued to do just that as Director of Hope House for another five years and, in retirement, continues to support Hope House as Medical Liaison.
They are all the “kids” of a wonderful couple, David and Tina Gould, Directors at Hope House, themselves the parents of two kids who have selflessly dedicated themselves to, in David’s own words, “give people with disabilities the attention, praise and love they deserve.”
They are all the “kids” of Consuela and Susie and of all the wonderful staff at Hope House.
And, I must say, after just a couple of visits to Hope House, they are becoming “my kids,” too.
As mentioned before, the financial costs of taking care of these special needs children are steep.
Estimates vary widely, depending on what is and is not included in the costs.
One study pegs the total lifetime cost supporting an individual with an ASD at between “an astonishing $1.4 million” and $2.4 million, “if there is also an intellectual disability.”
Another study estimates the average lifetime cost to be $4.1 million, including direct medical care, educational and other care and lost economic productivity — the latter accounting for 60% of the total cost.
Whichever way one slices it, the costs are staggering.
Hope House is one of a very few private, community based, non-profit organizations in Texas serving as a residential facility and “Forever Home” to children and adults with severe to profound intellectual developmental delays and physical disabilities.
It receives 80 percent of its funding from state and federal sources and relies on charitable donations to meet the other 20% of its needs.
You, too, can make Hope House residents “your children” by making a donation to Hope House or “Casa Esperanza.”
Moreover, Hope House is always looking for volunteers in the Greater Austin area.
Hope House:
Want to help build picnic tables? Have a song in your heart or cookies from your kitchen to share? Want to help coordinate a big event? We are thrilled to talk with you about your special talents or those of your group, and how you can provide a meaningful gift to our special population. Come see us, and let us create an unforgettable experience together.
The staff at Hope House promises volunteers that “the experience will be deeply rewarding and will generate a profound sense of gratitude.”
When, on my third visit, these two lovely little girls — sisters — ran up to me and hugged me, and others recognized me, some with smiles on their faces, I knew for sure that the Hope House “promise” above is an understatement.
Please visit Hope House at www.hopehouseaustin.org and make Hope House residents “your kids,” too.
Lead photo: Hope House resident with staff.
All photos by author or with permission from Hope House
CODA:
The author is not a medical expert and apologizes for any inaccuracies in terminology or in the description of clinical aspects of the disorders and disabilities discussed.
Names of some Hope House residents have been changed for privacy reasons.
