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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Finding Happiness and Joy

The Unexpected

For Gwen and her husband, there was no cause for concern while starting their family.  They had one boy, born typically. Gwen’s tests and scans all came back normal during her second pregnancy as well.  However, when Claire was born, it was apparent something was wrong.

Gwen recalls, “There was no reason to believe anything was going to happen.  I had a pretty uneventful labor, and she was born, and instantly everyone freaked out…they were pretty concerned and called in all the specialists to give her a thorough exam.”

“It Happened Again”

Doctors were unable to find the cause of Claire’s microcephaly and assured Gwen and her husband that there was a 25% chance of it happening again.  Confident it wouldn’t happen again, they got pregnant. 

At first all of the scans came back normal.  It wasn’t until she was 22 weeks pregnant there started being concerns.  When Gwen was 26 weeks along, they confirmed microcephaly for Lola, her unborn child.  Claire had this to say about it, “I don’t know if I’ve cried as much in my whole life as I did those 24 hours after Lola was diagnosed.  It just felt so unfair to have to go through it again..we really, truly thought we had a 75% chance or greater that everything would be fine.”

Choosing Life

Even though her obstetrician didn’t push for termination of her pregnancy, he encouraged Gwen to look at all her options.  Gwen recalled what happened, “I just remember going back to my OB who said, ‘you guys have been through an awful lot. Look Gwen, you have options, and I’m not going to judge you guys whichever option you take, but I would encourage you to check out every option.’…and I did exactly what he said.”

Gwen did her research.  She talked with people who had been through similar situations, visited websites, and read testimonials.  She said the following, “Who am I to play God? I was given this child for a reason; why am I to change this path?”

She chose life! A decision to this day she would choose over and over again.

Finding the Reason

It had taken years to find the reason behind Claire and Lola’s microcephaly.  After sending blood into different research hospitals, they finally had a definitive answer.  Her daughters have Asparagine Synthetase Deficiency or ASNS.  

Since getting a diagnosis, Gwen has created a Facebook page.  This page has helped other parents connect and find support in each other. Gwen had this to say, “It has been really neat to connect with these other families and see the similarities..How nice is it to know another family who understands what we are going through.”

Sleep is Hard

When asked what some of the challenges for Claire and Lola are Gwen mentioned a few things.  The first being the ability to control the girls’ seizures and the other is sleep. “I can’t say that nighttime is normal because they don’t sleep steadily.” Gwen said.  Lola requires constant supervision while sleeping. Usually there is a nurse who stays with her to help monitor her sleep and seizure activity. 

“Typically Atypical”  Life with Medically Complex Children

“There is nothing typical about any of my days, nor are any two days the same..the tricky part is we have PT, OT, speak technology and we have a vision therapist who comes and two teachers who come, so that’s like seven people who are trying to come Monday-Friday every single day.”

“We try to squeeze stuff in for our son.  A lot of times in the evenings he’ll have basketball games or practices, or we go with him to the gym..we try to have as much normalcy for him as we can.  We’ve always tried to do that. We are a pretty close knit family; we just like spending time together.” Gwen said.

“Life is Special and Perfect and Wonderful Exactly the Way it Is”

Gwen had some great advice when asked what she would say to a parent facing a similar diagnosis. “It’s scary as hell, I’m not gonna lie…I wish someone would have told me that back then, that I could still be happy, and that I could still find joy in the life that I had”

“I just wish that somebody had told me in the beginning..that life is special and perfect and wonderful exactly the way it is. Having these kids and thinking outside the box and not doing things exactly the way that you would with a typical child is basically upping your mommy game; it’s making you a better person, making you stronger, uniting your family… I just really want people to know that they can do it and that they just need to believe and love and find joy in every single day.”

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Living With an Unofficial Diagnosis

Positivity Despite Serious Medical Conditions

Mason is a medically complex 20-month old.  Despite all his diagnoses and difficulties, Kaitlin says, “Nothing has held him back from being the happiest child.”  His happiness is contagious to anyone who interacts with him.

One of the people most affected by Mason’s condition is his brother. “I’ve never seen his older brother so loving and so happy until Mason came into his life,” said Kaitlin.  Matthew is always quick to introduce his brother, Mason to his friends and always holds his hand. Kaitlin is so grateful for the love her boys share.

Trials Have Also Brought Blessings

Their extended families have been supportive from the day Mason was born.  Kaitlin’s mom is the only one, other than her husband, who can watch Mason, which Kaitlin says, is a Godsend.

There are some family members who haven’t truly understood Mason’s diagnoses.  They believed once Mason hit a certain milestone, he would function more normally.  It has taken time for them to realize that will never be the case. Instead, they are learning how to better support Kaitlin and her family.

On top of extended family support, Matthew’s school has done fundraisers and Christmas parties to give back to the hospital that’s helped Mason throughout his life.  Kaitlin says the kindness and generosity at fundraising events are “emotionally overwhelming” and she is grateful for their help.

Complications of Parenting a Child with a Chromosome Deletion

Kaitlin and her husband have not slept in the same bed since Mason was born. Mason has heart failure, doctors said it was likely he could stop breathing during the night. The thought terrified Kaitlin so she sleeps on the couch by Mason’s bassinet every night.  She has woken up many times to him not breathing. It is a sacrifice and a struggle but Kaitlin and her husband are willing to do it. 

“It’s a full-time job between calling insurance companies and making sure my son is getting what he needs,” said Kaitlin.  Even though he has a genetic disorder, chromosome deletion, Mason hasn’t been given a specific diagnosis.  This makes it hard for specialists and insurance companies to determine what medical equipment Mason needs to have. Despite all the struggles, Kaitlin said, “…all the positives really outweigh all the negatives.”

Fear for Child with Double Chromosome Deletion

On his 11th chromosome, one of the deletions is a whole gene deletion called the SDHD gene. This deletion increases Mason’s chances of hereditary cancer.  Unfortunately, cancer runs in Kaitlin’s family. The possibility that Mason will more than likely have to deal with cancer at some point in his life is reality daunting.  He has endured so much already, but Kaitlin is confident they will find their way through.

“That is Your Child and You Will Do Everything for Them”

Don’t shy away from asking questions.  Kaitlin says, “You are your child’s voice,” you need to be the one to stand up for them.  If medical professionals can’t give you the answers you want, find a support group of fellow parents.  Kaitlin wished she had taken advantage of this sooner than she did. She was never turned away when she had questions for other families in similar situations.

Don’t doubt your strength and abilities.  Many people have said to Kaitlin and her husband, “I don’t know how you do all this!  I would never be able to!” Their response is always, “Yes you can. That is your child and you will do everything for them.”

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Embracing Who You Are

Realizing your brother is different

Most siblings who are close in age will attend the same school.  For Stephanie, this was one clue that made her realize her brother Mick was different.  She said, “My family is very religious, so my sister and I went to a religious school..my brother had to go to a public school so he could get all of his services..that’s when I realized it was different.”

There were other little differences in her life compared to her friends that pointed to abnormalities with Mick.  Two-years-younger, Stephanie often had to watch Mick. She said, “When I was 10 or 11 years old and given those responsibilities to take care of my brother and to watch over him, that’s when I realized i was different from my friends because they didn’t have to worry about or watch their older sibling..I was the only one that would have to cancel plans sometimes to stay home.”

Glass Child syndrome

In her family, Stephanie felt a need to hide any issues she was facing.  She understood that her parents were stressed in caring for Mick. She shared, “I definitely had some issues.  These problems that I had were not really focused on early in my life, but now they are. I’ve had to kick and scream and do a lot of things to get the help that I now need.” 

Stephanie also felt guilt in having her own issues.  She said, “There is a lot of guilt that comes with having my own problems, because I have the mind and capacity to know I have problems. At the same time, my parents needed to focus on me…and I’m always second to my brother.”

Having a child with a disability is “The truest form of love”

Even though growing up, Stephanie felt she came second to Mick, she saw the sacrifices that were made to care for him.  She said, “It takes not just one village, but many villages. That showed me that sacrifice is the best way to show you live, and giving of yourself means not just your time, not just you money, and not just your extra time, it is the giving of multiple parts of yourself at once and giving them 100 percent.  I’m giving them 100 percent of my time and using 100 percent of my knowledge and 100 percent of my talents- all three of those at the same time, and that is the truest form of love.”

This is something that she feels like helped shape her into the person she has become.  Her experiences in having a sibling with a disability became her childhood, she said, “So much of who I am is just getting to know him and be with him my whole childhood..when you have a disabled sibling, your whole world changes.”

Being honest about your child with a disability

Looking back at her childhood, Stephanie wished she could have been more informed about what was going on.  She said, “I wasn’t told a lot of the intricacies with his disabilities, not given a lot of paper knowledge, I just had my experience.  All I had was my 10-year-old brain to assess the disability of my brother. If my parents had been more real with me about the problems when I was given more responsibility, that would have helped me so much more.” 

She also mentioned that defining words related to their disability would help normalize non-normal situations. Stephanie used a feeding tube as an example.  She said, “..you have to use a syringe to give them food..that’s not typical of other people in our world and doesn’t really happen in many families..keep it very real and be real with your kids..that will only help them in the end.”

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Having Multiple Children with a Disability

Being born with no issues

Camille explained that all three of her children were born presenting no issues.  Around five to seven months, is when they started having seizures. Camille said, “The oldest one was considered a genius.  She was able to put a puzzle together at the age of four months, and she was able to walk into the doctor’s office three or four steps on her own by the age of seven months, and then she had her first seizure.”

The medication that she was given to control the seizures was phenobarbital which Camille said will cause an intellectual disability. Her three children took phenobarbital and all developed an intellectual disability.

No explanation for seizures

“..they never found a specific reason for it or a name for it.  They all had the same issue, and then the learning disabilities on top of that were all slightly different.” Camille explained. With their first child, Camille said she had a really hard time dealing with the onset of a disability.  She said, “..she had been doing so well and was so bright and cheerful, and then suddenly began having so many problems.”  

As her seizures increased, so did the doctors appointments.  Martin was working so Camille had to go to those alone. Something that Camille said “..it was quite difficult.”  As she was talking to the doctors, she said, “I started to think, ‘You know, this is what we’ve got to deal with, and we’ll just figure it out.  We’ll make it work.” She shifted the focus of trying to solve the issue to more of, “Okay, how can we make it better for her?”

Hardest part was the best part

Camille and Martin chose to have their children home with them instead of placing them in an institution.  This meant they needed to advocate for their children to get them the support and services they needed to be in a traditional school.  Camille said that they were met with pushback from the school districts.

She said, “They would say, ‘Well, you’re the only parent that wants that.’  And we’d say, ‘Well, we have three kids like this, so we have three children that we want this for.’ and so by having the multiples, we had a little more push for them to consider it. “  Her advocacy for her children started to help with the organization of local programs in their city.  

IDEA bill give access to services

For Martin, he said that introduction of the IDEA bill made access to services easier for them.  IDEA or the Individuals with Disabilities Education Act is a federal law that ensures that people with disabilities get free appropriate access to a public education.  

Even though this law was passed, Martin said that they were still met with resistance from the school district.  He said, “..we had to educate the local public school system as to what was best for our kids rather than what was convenient for them to present to us.”  The school would argue that they were the only parents pushing for services and other children didn’t need them. What they learned was that other parents needed and wanted services, but they weren’t aware that they could ask for them.

“I think the districts were caught in the middle because they had a financial issue regards to these kinds of services and at the same time, they were obligated to take care of business by federal law.  That was a struggle too, that was difficult.” Martin said.

The impact multiple children with disabilities have

Camille and Martin both shared the impact having their children had not only in their life, but the life of their neurotypical daughter, and their community.  Camille said that over the years they would run into people who knew their children with disabilities and they would always talk about how great they were and the memories they had.  

Martin shared that they wanted to do things together out in the community.  They wanted people to see their children as part of the community rather than being ‘different or odd’ as Camille stated.  They involved their children in service projects for neighbors and the community.  

Jenny, one of their daughters, had such an impact on one of their friends.  Martin shared, “One individual who became a great friend to us and to Jenny said Jenny turned her around in how she handled special ed because of the experiences she had with Jenny.”

What about their neurotypical daughter?

Jackie, Camille and Martin’s daughter, is the only child in their family that doesn’t have a disability. Looking back at how their family impacted Jackie, Camille said, “She is such a strong advocate..she’s never seen having siblings with disabilities as something that tied her down..she sticks up for people. If she sees somebody who is mistreating someone with disabilities she sticks up for them and teaches.”

She continued saying, “It has not harmed her in any way.  It’s been a blessing for her and has made her a better person.  People are always telling me how impressed they are with her as a person, both people who know her background and people who don’t.  It’s been a really good experience for her.”

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