I considered 'rehoming' my child with autism like a famous YouTube family did, but could never go through with it
- Fans of Myka Stauffer were dismayed when the famous YouTuber announced that she and her husband had decided to "rehome" their adopted son with autism.
- Jamie Davis Smith, a mother of four, understood the Stauffers' struggle, since her oldest daughter, Claire, has intellectual and physical disabilities.
- Over the years, Davis Smith considered finding an alternative living option for Claire, but could never go through with it.
When Myka Stauffer told her more than 700,000 fans that she and her husband had "rehomed" their adopted son, Huxley, who has autism, those who had loyally followed the family's journey to China and back, and even donated to the cause, were understandably upset. Many wanted answers when the family gave away the child because his disabilities were more significant than they had expected.
Like the Stauffers, I struggled when my oldest, Claire, now 13, was born with multiple and severe disabilities. At times, when things got particularly stressful, I considered moving Claire into a residential facility, where she might be among people better equipped to handle her needs. But no matter how much easier it would've made our lives in some ways, I couldn't go through with it.
Unlike the famous YouTube family, our doctors were clear from the get go, perhaps to a fault, about what Claire's life would look like and how it would take a toll on me, and our family.
When my oldest was born, a doctor told me she would be 'severely retarded'
While seated by her crib in the hospital days after she was born, a particularly insensitive doctor told me that Claire would be in a wheelchair for the "rest of her life" and would be "severely retarded." No one talked to me about how she could have a happy and fulling life or how we could adapt as a family. I wish they would have.
Later that day, I saw a child who had broken her leg when she fell off a piece of playground equipment. I cried because Claire would never be able to run or climb like that.
Claire has autism, asthma and epilepsy. Her brain is not fully formed. Her heart is in the wrong place. She has low muscle tone. She cannot feed herself or speak. She communicates mainly through a limited number of signs and pointing.
My firstborn loves being in the water and watching movies while snuggling with her three younger siblings. But she also cannot be left alone for even a few minutes. She can get aggressive when those around her do not understand what she needs or when her carefully planned routine is disrupted. Sometimes just seeing something out of the ordinary, like a person wearing a hat, can cause her to meltdown.
From the time she was a baby, she needed constant care and attention, and regularly went to the emergency room and underwent numerous surgeries.
In the early days, I cried a lot. I had good insurance and tried to get therapy to help me cope. But I could not find any in-network providers, and with all of Claire's medical bills, I couldn't also afford the $250 per session out-of-pocket costs.
I was paying $1,000 a month for insurance, plus at least $200 a week in co-pays for Claire's weekly appointments with speech, occupational, and physical therapists and her many medical specialists. The hospital social worker at least offered me a pass so I could park for free whenever Claire was admitted to the hospital.
I quit my job as an attorney to be Claire's primary caregiver
I wanted to return to work as an attorney for the federal government. I loved my job, but I couldn't work and also take Claire to her multiple weekly medical appointments. It didn't matter that much anyway in the end, because there was no affordable child care option available that could provide Claire with the constant support she needed. That included feeding her slowly enough to ensure she would not choke, and being able to react appropriately in case she had an asthma attack or a seizure.
My husband kept his union job, but our salary was cut in half overnight.
I tried to get Medicaid for Claire, in hopes of accessing additional support for her and to get a caregiver for her at least a few hours a week. She was denied for years. As we grew our family, and had three more children, shuttling Claire to her many appointments with her younger siblings in tow became increasingly complex.
I couldn't help but feel sad as I watched my friend's babies start to walk and talk
In the meantime, I watched in pain as my friend's babies, who were the same age as Claire, began to walk and talk. They went to the playground and preschool. Suddenly, I felt I no longer had a place in the community among parents of typically developing children, even in Washington, DC where we had chosen to live in part because of its diversity.
I even felt alone even within my own family.
When my family planned vacations, they didn't keep Claire's needs in mind. They would travel to the beach or campgrounds or European cities with cobblestone streets that Claire's wheelchair could not navigate. The drastically different sights and sounds could overwhelm her and there would be little she could enjoy at those destinations.
When Claire was three, the same age the Stauffers' adopted son is now, I had some hope. I enrolled her in a public school that claimed to be an appropriate placement for Claire. When I visited, the children were mostly lounging on the floor, content and safe — but not engaged or learning. The teachers and therapists were willing to write off any possibility that she could achieve more. I knew she deserved more.
After months of research, and a long night sleeping outside to be among the first to submit an application, I enrolled Claire in her current school, which has been a lifeline for us.
Nearly all teachers are special educators and Claire has an aide who helps her throughout the day. She gets therapy there and devices to enable her to participate. There's a garden where children learn to grow their own produce and the playground is fully accessible. The building, designed by Michael Graves, a renowned architect who used a wheelchair, is easy for Claire to navigate with it's bright and open hallways.
My husband and I sometimes talked about whether Claire would be better off living somewhere else
Even with this improvement, late at night, when the kids were asleep, I lay awake wondering if I were doing enough for my daughter. My husband and I discussed our options, concerned that the kids would overhear us and worry that we would give one of them away.
I couldn't help but imagine a place for Claire, where she could live with other children with disabilities in a world designed just for them. I imagined giving her a break from our world, which was constantly throwing obstacles her way. There were the buildings that Claire could not enter because they lacked ramps or elevators. There were the movie theaters that we could not bring her to because she might be too loud. There were the activities she was excluded from because of her disabilities.
I searched for residential facilities for Claire, but couldn't find an appropriate fit. I was also haunted by the history of abuse and neglect that occurred at institutions, which resulted in a series of lawsuits in the 1970s.
It took time, but I eventually realized that Claire could have a happy and fulfilling life, if I gave her the opportunity to do so.
I found out about sensory-friendly movie theaters where families could make noise without worrying about being kicked out. We found a pool nearby that Claire was comfortable using. After Claire's Make-A-Wish trip to Disney World, we discovered Claire's deep love for amusement parks and now often plan vacations around thrill rides. I found a one-week overnight camp for kids with significant disabilities where Claire participated in adaptive canoeing and horseback riding.
When we started to find activities that Claire enjoyed, I realized I could provide her with a fulfilling life
I also made peace with the fact that there were just some things Claire could not do. There have been times I have brought Claire's siblings on a hike or a bike ride without Claire, while her father stayed home with her.
I sought out adults with disabilities to get additional insight. They told me about the trauma of being forced into therapies to try to make them more "normal." These therapies aimed to train them to make more eye contact, and stop stimming. Those are repetitive behaviors that people with autism may find comforting.
I attended events hosted by ADAPT, an organization run by advocates with disabilities. I found the Autism Self-Advocacy Network, which is led by people with autism who push for independent living and acceptance. Through groups like, Moms Rising and Little Lobbyists, I found other moms like me.
I listened to activists like Liz Weintraub, who has intellectual disabilities. Liz is married, works, and hosts a podcast, "Tuesdays with Liz."
When I learned more about living in a facility, I knew it wouldn't be a good fit for Claire
Liz has spoken about the "community living" facility her parents placed her in, which she describes as more of an institution. Liz has said that if she stayed there, she would not have had the opportunity to live on her own with her husband, while doing a job she loves.
Instead of just asking doctors what to expect, I turned to people with disabilities, like Liz, to help me make better decisions.
Things improved for Claire and me. I took more joy in small things, like watching Claire's eyes get wide whenever she sees an ice cream sundae heading her way.
Instead of measuring success by how much Claire can achieve, I focus on what she can do right now. I realized that there is not one measure of what it means to be happy. I have let go of a lot of the anger I held about Claire not being accepted by friends and family, while still fighting for her to be included in our community as much as possible.
At times things are still difficult.
We are limited as a family in what we can do, but Claire is happy
There are still places we cannot go because they are not accessible. There are people who do not welcome us into their homes or at events because Claire's disabilities make them feel uncomfortable or might inconvenience to them. Claire's access to health care and specialized education is under threat due to Republican lawmakers' attempts to gut the Affordable Care Act.
But still, Claire is safe and healthy and happy at home where she belongs.
As the Stauffers publicly revealed to the world, not all children with disabilities are as lucky as Claire.
We don't know the details surrounding Huxley's condition. The Stauffers were intentionally transparent about his adoption journey, which helped increase their profits from their platform, but all the couple shared with their followers was that he had "difficult" behaviors.
I imagine his "behaviors" may have included acting out, due to his frustrations or an inability to communicate any other way — the same way Claire sometimes pulls my hair when she wants a hug or to draw me in closer.
The Stauffers weren't open about Huxley's disabilities while they profited from him
Perhaps it wasn't possible to keep his siblings safe in the home. We just don't know. But residential facilities are rarely, if ever, the right answer.
This is where the Stauffers did a disservice to their adorable boy who they brought to the US all the way from China, and to other families with children with disabilities who may be in similar situations and looking for guidance.
They put Huxley's life on display, when it benefited them and repeatedly said that they were his "forever family." Then, they then used phrases like "rehomed," which are better suited for dogs than children, to describe upending his life.
I hope that Huxley's new parents are ready to expect the unexpected, as all parents need to be. I hope that they receive the support they need to provide the best care possible to Huxley.
The Stauffers are not the role models they pretended to be for the years they cared for Huxley. If other parents are struggling with raising a disabled child, they should know that they are not alone. It may be hard, and it may take a lot of work. It may be different than they envisioned when they were excitedly building a nursery. But it is possible to have a wonderful family life with a disabled child and for disabled children to grow into happy adults, as long as you don't give up on them.
- Read more:
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