Brenton and Charity Robinson will never look back – of course not. That’s not an option a family has, that’s not an option a family wants, that’s not a thought that enters their minds.
Their thoughts are on the future: looking forward, the path ahead for their youngest son is perilous, and they feel, at times, they’ve had the rug pulled out from under them, not by fate but by a system, they say, that has reneged on a promise of help.
The Gladewater couple has five children. Two were born to them, 15 year-old Abby Grace and 5-year-old Tripp, and three came home through adoption: Lincoln, 4-and-a-half, and the twins, Boston and Asa, a few months shy of 4 years-old.
There's so much to be thankful for, so many unknowns still ahead.
The twins’ adoption was finalized in August 2016 – it wasn’t an easy one, dubbed by the state as a case with “special circumstances.”
“They called us to submit for the twins,” Charity said this week.
There was a laundry list of concerns, ones that could hopefully be balanced by Brenton’s experience as a nurse practitioner, Charity’s background as a teacher and through their shared determination.
“We prayed about it and decided that we wanted to go forward with trying to adopt them.”
Both boys had been injured by their biological family members. Both were considered to have shaken baby syndrome.
Boston’s injuries weren’t as severe as his twin’s – even considering he suffered several brain bleeds, even though he had four broken bones by the time he was 4 months-old.
Asa, among the non-accidental injuries he suffered as an infant, endured traumatic brain injuries. He has long-term issues; a seizure disorder, for example. He has no pulmonary valve. He has a hole in his heart. His tricuspid valve leaks significantly. Asa has a chromosomal anomaly. He’s feeding tube dependent and regularly on oxygen.
The boy sees seven specialists regularly in addition to therapy several times a week. At 3-and-a-half years-old, he has already endured seven surgeries and has three major ones ahead – one will have to wait until he reaches 45 pounds; another won’t be viable until his heart stops growing in his teens.
They were red flags for a potential adoptive family. On paper, Asa’s case sounded scary.
“Our twins could have very well ended up separated, one in a nursing facility institution, the other in an adoptive home,” Charity said. Fortunately, that didn’t happen, “Because of my husband’s medical background and my willingness to make a plan and fight like hell for what my kids need.”
They didn’t know everything. They knew the highlights. Knowing them, they were ready for what life would bring.
“Yes, we did know that these kids came from hard places. We knew that Asa had a lot of medical needs,” Charity allows. “I was scared out of my mind. I was absolutely scared out of my mind,” but time has shown Asa can have a strong quality of life with proper care, that he can close the developmental gap with persistence.
“He is going to be OK. They are going to be OK.”
She can be content with that, but Charity won’t stop at OK, not when it comes to her children.
“With everything they went through before they got here to me, they deserve every opportunity to get better.”
Some promised opportunities aren’t materializing, she says. And that’s not going to be OK.
According to Charity, assurances were made: “We know this is going to be a struggle. We know this is going to be a financial burden. We want to help you.”
Grateful for that help, encouraged, the family moved forward with the adoption. They’ve been blessed to see their family grow. They’re a family of seven, forever.
They’ve also since learned there were tricky strings attached to the funding that would help the larger, now medically-burdened family.
Assistance that was to help Asa through age 18 dried up. The savings the Robinsons put aside for the boy’s surgery became a disqualifier. Likewise, their third vehicle – large enough for the whole family and caregivers on special occasions – doesn’t fit the promised program.
Asa was shifted to the STAR Medicaid Managed Care instead of STAR Kids. He didn’t qualify for Supplemental Security Income.
“We were told in the beginning our son would get Medicaid and would get what he needed, no matter our resources,” Charity maintains.
He loves “kern dogs” and was ready for turkey on Thanksgiving. His twin brother is a Mickey Mouse fan and digs peanut butter and jelly sandwiches. The pair were ready to play (and, occasionally, feud) with older brothers, Tripp and Lincoln, over their train-table Wednesday.
But STAR alone is not set-up for the specialists and home health needs the boy has, she insists. It can’t account for the assistance the family needs for his regular seizures, his oxygen feed, the round-the-clock monitoring of his stats. Not to speak of the surgeries ahead, and the costs the family will incur.
“We need that. He deserves that. He qualifies for it. Because we’ve been moved to managed care that does not have that, my son’s health is in jeopardy.”
Without the promised support, she contends, not only is Asa’s well-being on the line, so is the health of numerous other children with medical needs – those awaiting adoption and those already in forever families.
It’s already hard to find adoptive families for children with extensive special needs, she said, how much harder when the system that’s placing them won’t ensure it will help carry the burden?
Scaring off potential parents with unknown financial risk, the children are more likely to end up in a nursing facility or some form of institutional care – a long-term, far more expensive reality – when they could be thriving in an adoptive home.
“When everybody was on traditional Medicaid, everybody got what they needed,” she says. “Now with this spin-off of special needs children and non-special needs children … it’s a travesty.
“What does the state think is going to happen if a child with special needs is not going to be provided for? We’re going to have a huge influx of children, who could have had parents, who end up in an institution or a nursing home. That is for sure not going to be cheap.”
There’s no backing down, of course.
“I would still do it knowing this now, because they’re my kids now,” Charity said. “We’re going to basically kill ourselves to get my son what he needs.”
Charity and Brenton are fit for the fight, but their thoughts go out to the children without families and the adoptive families that are struggling alone.
“There’s got to be other adoptive parents that are in this situation,” she said. “We’re not desolate. We can feed our kids. We can clothe our kids. We can put a roof over their heads. We can survive.
“I’ve made a lot of friends in the special needs world and the adoptive world. I’m not just fighting for my kids here, I’m fighting for everyone else.
They can’t make the necessary surgeries and therapies magically appear, however. They can’t conjure the funds they’ll need to cover all Asa needs.
But they never expected they’d have to, Charity says.
“That’s not what we were told. That’s not what we were promised. They deserve to be given what they were promised from the beginning,” she said. “And it’s never going to be OK with me to get sub-par care when that’s not what we were promised.
“If a child is adopted, it should not matter, we were told it did not matter, what our resources are.”
Children deserve to be able to reach for their personal best, Charity added, and she’s pushing Asa’s story as far as possible to remind the powers that be to do their best for the sake of the children in their care.
“If he doesn’t get those things now, he’s going to end up having to be on help forever. I absolutely, wholeheartedly know that if he’s given what he needs now, he’s going to be able to go far in life. I know that God has a plan for him,” she said. “We need what we were promised by the state in order to do our part.
“He’s defying the odds, we just need to know we have someone in our corner.”