Denise: Autism and Epilepsy

Jul 1, 2020 | Autism Spectrum Disorder, Epilepsy, Stories | 0 comments

Using Personal Experiences to Help Others

Southwest Autism Resource and Research Center

Denise founded two organizations to help better the lives for people with disabilities.  She was inspired by her own son Matt, who is on the autism spectrum.  Southwest Autism Resource and Research Center (SARRC) and First Place.

She shared what SARRC is, saying, “SARRC was formed with a big vision, ‘To ensure that individuals with autism and their families would be supported throughout their lifetimes, while advancing discovery and research’..We are one of the most robust sites in the country for the recruitment of subjects for the pharmaceutical trials and genetic materials.”  

Finding Housing for People with Disabilities

Using SARRC, Denise and her team focused on finding housing for people with disabilities.  She said, “..we started searching and forming, and working on strategic plans…to evaluate 100 different residential options across the country specifically focused on special populations.”

After collecting this data, they were able to establish guidelines and codes for housing options.  They created a model nonprofit company called First Place.

First Place

Using the data they collected, they were able to establish 10 specific design goals and guidelines for First Place.  “Our bold vision for First Place is to ensure that housing and community options are as bountiful for people with Matthew, and those with other differences, as they are for everyone else.”  Denise said.

Looking at the unique needs of someone with a disability, First Place provides a variety of accommodations to help people with disabilities learn and achieve independence.  Denise shared, “First and foremost, we know that families were very concerned about safety and security..people are well aware that they need to come in and check-in, and check out when they leave the property.”  

There are also 34 cameras in the public spaces to keep a watchful eye on what is happening at the residence.  

Unique Accommodations for People with Disabilities

“We’re also responsive to sensory issues.  There are no fluorescent lights in the building, they’re all low-voltage LED lights..beyond that, we’ve used sound baffles and gypcrete between the floors to create a quieter building.” said Denise.

She continued to explain that they encourage health and wellness.  They have a sports pool, a culinary teaching kitchen, fitness room, and a Zen room.  

Other unique features First Place offers are motion sensors that will shut off the stove or oven if it doesn’t sense motion for a certain period of time, different color palettes for each floor, health spot, Lego lounge, and a Cardinal’s game room. 

Denise shared that they use the culinary teaching kitchen to help people learn how to make their own meals.  They don’t offer group dining, they want to encourage the residence to learn those skills for themselves.  “..it’s almost like senior housing in reverse..we’re providing most intense support early in adult life, hoping to increase that level of independence, increase their quality of life, increase their choices for where they go next, and reduce the cost throughout their lifetime.”  shared Denise.

Challenges in Raising a Child with Autism

First Place and SARRC were both created in response to the challenges Denise and her husband felt in raising Matt.  She said, “I think the hardest thing as Matt’s mother is believing that I’m doing the very best I can, and that I’m not leaving any stone unturned during my lifetime to try and help Matt be the very best he can be.” 

She added, “..realizing that just as Matt needs a community, as parents, we need a community too of helping us get to that next space.  As much as First Place is for the people who live here, it’s also for families like ours, who want to get to that next space, and want to help their loved ones do the very best they can.”

Joys that Come with Parenting a Child with Autism

Denise goes on to explain that parenting Matt has taught her to experience a different side of parenting she didn’t know existed.  She shared, “..he keeps us grounded on a daily basis of what’s really important, and helps us not take for granted so much of the progress that he’s worked so hard to make.”

Matt has taught his parents to “live in the moment, to be joyful..he’s taught us about love, unconditional love at the deepest level.” 

Finding What is Attainable

The best advice Denise could give is, “..do what’s attainable.  What’s attainable today may look different tomorrow.  And that we can’t change the challenges in front of us all at once.  And we’re so much stronger when we work together and not go at this alone.”

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