Think about your voice. You use your voice to share your feelings, request what you need and to communicate your dreams and desires.
Robert Rummel-Hudson and his wife Julie, (married in 1998) have thought about expressive language a lot since their pediatrician suggested they test their then 18-month old daughter Schuyler (pronounced “Sky-ler”), for lack of language skills.
Robert said, thinking back to that appointment nearly a decade ago, “It’s been a long road.”
Robert, a writer by trade, was already a blogger when Schuyler was born in 1999 so it seemed natural to blog about her birth and new parenthood and then about the diagnosis of Polymicrogyria that came when Schuyler was three.
According to Robert’s web site,
[Polymicrogyria] can affect the patient’s speech and fine motor control, can cause partial paralysis of the facial muscles, tongue, jaws and throat, difficulties in speaking, chewing and swallowing, and sudden episodes of uncontrolled electrical activity in the brain, resulting in grand mal seizures. In many cases, mild to severe mental retardation is also present. The effects of BPP can range from mild learning disabilities to infant death.
Expectations Fueled by Denial
Robert and his family currently live in Plano, Texas, where Schuyler attends a school for children who use Augmentative Alternative Communication (AAC) devices. Much of her days are now spent in mainstream classes with neurotypical children her age.
Within her rare diagnosis, Schuyler is even more unique. Polymicrogyria affects 65-75% of her brain but she hasn’t developed seizures. The risk for seizures goes down as Schuyler ages but, as Rob explains, it makes him feel guilty when he’s not feeling anxious because that is part of who he has become as a parent.
“When I look back it feels like I should have known, but we were new parents.” He says even now when he hears little kids talk; it is strange, always comparing them to his experience with his silent toddler.
Schuyler is in a school in Texas especially for kids using AAC technology in regular education classroom. She’s been using the device – her “Big Box of Words” – for 5 years. As time has progressed her excitement has worn off.
The goal of the program she is in now is for her to be mainstreamed. For Rob, it felt “pretty and very happy ending movie of the week” but the reality is that her noted delay has meant Schuyler is not doing age appropriate work. They are facing her delays in this way for the first time so this made Rob really analyze what he’d expected of her.
“It’s been humbling realizing in a lot of ways I was still keeping a lot of the disability at arm’s length. I thought I was empathetic and that I understood, and yet I was still hanging on to a lot of expectations that were fueled by denial.”
“When she is doing well it’s tempting to see it as a larger victory.” He said. “It’s hard not to get too excited and really embrace the despair.”
He doesn’t dwell too much on the negative when he hears about her progress because she spreads her positive energy to him. He calls this a “gut check” so he and Julie turn to Schuyler to get their perspective back in check. Besides Schuyler’s words have special value.
“I pay attention to everything she says because it takes a lot of work to say it.”
Rob is hesitant to classify women and men into different categories as they navigate their feelings about parenting a child with special needs. However he does believe that many fathers who get very involved in the lives of their disabled children look for fixes where moms are generally interested in making the situation workable.
Typical of that belief he said, “How much is broken and how much can I fix?” There is a certain amount of acceptance with a disability and not necessarily finding a way to fix it. Parents begin to achieve an understanding that acceptance isn’t surrender. That was a huge lesson for Rob and as time passes he believes that a diagnosis starts to mean less and you start looking at the person.
Rob says that because Schuyler’s care takes greater attention that he feels closer to her. He believes that parenting her filters him in a way that makes him a better person. He adds that special needs parents require a level of intensity and focus on their kids that parents of typical parents simply don’t have, which translates to a more intense relationship that he sees as a blessing.
His Daughter’s Future
Rob admits the things that scare him about Schuyler’s future may be generational, based on his experience of how people with disabilities were treated in the past. He shudders (literally) to think about his daughter becoming a preteen and he is trying to learn to stay out of managing her friendships, but admits that this is hard because he wants to be her protector.
In a moment between us while we were talking about our kids blending (or not) in with typical kids Rob admitted, rather surprisingly to himself, that he may just be prejudice against neurotypical kids because of his tendency to mistrust them, almost expecting them to do something mean.
“I try not to help her build friendships, but of course I can’t help wanting to.” He says. “Other fears come up as she gets older; it’s hard to let friendship develop or not develop the way they are going to. I’ve had to realize that frienemies are just a part of all kids’ lives.”
The Special Needs Parent Divorce Myth
He goes out of his way to say he doesn’t speak for his wife Julie. She does read his blog but she doesn’t editorialize it. He says that the way they’ve coped, as many other special needs parents have, is to let each other have their “crazy time.” They have worked hard to let go of the social narratives of others as well as their ideas of what parenting and marriage would be like. They’ve built their own concept of what their family is as they’ve moved through life. They’ve let go of what expectations others have of them and they are finding their way by reforming their own expectations.
A reporter asked him about the reported statistic that 85% of parents with special needs kids split up under the pressure and the challenges we face. Unable to find the research source, Rob said that the numbers may or may not be true but he wonders why it doesn’t get called into question. Maybe, he says, because it feels so true. He said it could be an Urban Legend, but happily clings to the belief that he and Julie are part of the fortunate 15 percent.
The Daughter Leads the Father
Rob said he used to be a writer but now he is experiencing life as a father, an advocate and writer as he publicly tells his family’s story. When I asked him how he thinks his daughter will react to the publicity as she ages, he said, “I don’t worry about it too much because I see the seed of advocacy.”
Rob is proud to talk about his daughter’s charming ways out on the book tour and at speaking engagements and he feels that the experiences help her integrate into the world in the very unique way that she can. He knows the challenges she will face all too well but one of the beautiful things about this daughter-father relationship is that she has taught him to believe in what is possible.
Robert Rummel-Hudson’s book, Schuyler’s Monster, is available here. An honest view of parenthood with his wordless daughter, his memoir is a moving journey through fatherhood. See reviews here.
We have a signed copy to give away! We will be giving it away randomly to one of our site members! Not registered yet? Start here for your chance to win!
Note: To support the site we make money on some products, product categories and services that we talk about on this website through affiliate relationships with the merchants in question. We get a small commission on sales of those products.That in no way affects our opinions of those products and services.