We meet Mrs. Hoffman* at 4pm on a Monday, Samuel won’t be home until 5.  It’s better this way, she says. About 10 miles north of a town of 6000 in central NC, the Hoffmans, family of four, live in a modest ranch-style home set back about 50 yards from the gravel road that connects them to their neighbors.  She says she likes how they are situated, close enough to a town to get what they need, close enough to their neighbors to see them through the trees in the winter when all the leaves have fallen, as they have now.  In the mountains outside of Asheville, she felt too isolated; even in the winter she couldn’t see her neighbors’ houses.  The mountains were hard anyways, she says, that’s when a friend pointed out that Samuel was different, that’s when this all began.  At the time, she didn’t allow herself the time to grieve, she says, but she wishes she did.  The whole process she describes as a “journey with God.”

When Samuel was 3, he wasn’t as verbal as some of the other kids, and a family friend softly recommended that he be tested.  It started with a hearing screen, mom says, and quickly unraveled from there into a diagnosis of autism, at the high end of moderate. She says she wished she had received more written information from her doctor. At the beginning, friends and family seemed eager to help, enthusiastic about digging up articles, but eventually drifted away. About one year before they moved to Oregon, she found solace in the National Association of Childhood Development (NACD) out of Utah, which seemed to have a handle on how to seek improvement with autism.

Sensory integration was important, she says, and she describes many of the techniques they tried with young Samuel: rubbing him repeatedly with exfoliating gloves, attempting tongue stimulation, putting deep pressure on his trunk, trying to focus on the trigeminal nerve. He couldn’t tolerate earphones as recommended by the NACD, she says, but they used music and her voice to try to help with his verbalization. Sometimes his father would help, but really it was the mother’s work.  The tapes from NACD were the most helpful, she recounts, but it was hard to watch Samuel continue to fall short of developmental milestones and expected progress. Her faith is immense; faith in God, faith in the NACD, faith that one day, one of these treatments might facilitate a breakthrough.

Oregon had better programs, she says. The school was more prepared to work with exceptional children (EC), and had more ancillary services in place including the “Kid Zone,” which was a little more social, less isolating, more supportive. Because there was no state sales tax, though, the programs were only 3 days a week, and there was that one year when schools had to close three weeks early because they ran out of money. Oregon was only a little better than North Carolina for special programs; mostly she kept listening to the NACD tapes and followed their recommendations for hope for a cure: magnesium supplements for a year, casein-free diets, gluten-free diets, special supplements from overseas, eating the right foods except of course farm raised fish because of the metal toxicity, swimming lessons, even hyperbaric chambers.

Family was one of the reasons for and the problem with moving back to North Carolina. “An investigative reporter with an agenda who needs to feel needed” is how she describes her own mother, who actively encouraged/solicited their return to the east coast.  When they first moved back and before they found housing, the family had to live with her older sister The Hoarder, who excluded Samuel. “It hurt to see that your child isn’t accepted the way you want him to be accepted,” she says. In order for it to be a better environment for her kids, she took it upon herself to clean up the house, filled with things that felt important to The Hoarder.  Their relationship has been distant and strained ever since.  There is another sister, younger, whom their mother treats with “kid gloves;” and who is verbally supportive, but not actually helpful.  Mrs. Hoffman was glad to get this year’s Thanksgiving over with.

As a mom, you are responsible for most of the care, she says, because your spouse is at work. It really comes down to the moms, and aside from the NACD, the only other group that has been helpful is a mom’s support group. She says that many of the moms have their own mental health concerns, namely depression, because of the isolation of caregivers and lack of support by extended family.  She thinks maybe she had some of her own mild depression in the past, but doesn’t want to elaborate.  She says that lots of social perceptions of autism make people hesitant to jump in and help, reticent to try and interact with Samuel out of fear that they might mess up.  This makes it worse for the caregivers, she says, more isolation, more loneliness.  Some moms are reluctant to take help from organizations even, because they are so used to being in their home, with their own systems set up for managing their life and their child, and they are worried to have someone poking around their house, looking at how they are doing things, judging or critiquing how they survive. They march on in solitude, listening to NACD tapes, searching the internet for new hope.

When they picked this house, they picked it for the schools. Samuel started to have behavioral problems in late elementary school she says, but at first the school was supportive, with programs in Special Olympics, swimming, bowling. Then came the structural changes at school, loss of funding for the special programs, problems with the bus for swimming, then for bowling. In Samuel’s high school, they changed the schedule dramatically; why didn’t they anticipate that Exceptional Children (EC) would have such a hard time with the big change?  For much of the day Samuel is integrated with the neurotypical children, but she says his level of functionality is mixed and they don’t understand the stress that changing rooms put on an EC student.  They don’t even have a special room for EC students to calm down in; “I tried to tell them that even a closet would be fine, but they wouldn’t listen,” she says.  There are gaps in the programs that address EC in the school system, gaps in the schools, gaps at the county level.  When asked if she’s ever gotten involved in systems-level policy changes, she says that sometimes at Samuel’s school she feels confident enough to say something as bold as “this is the third time we have met together but no action has been taken.”

This year the school wanted to do a psych evaluation with Samuel, but she is very wary of psychiatrists and neurologists.  They want to put him on medicines, she says, but he is so sensitive to psychotropic drugs and he wouldn’t be able to verbalize bad effects of the drugs given his level of communication.  We would never know that he is suffering.  But she has a nephew with epilepsy who has been trying non-medicinal hemp oil with success, so she is heavily considering that.  She found a website that has very detailed information including a dosing schedule for the non-medicinal hemp oil, which makes its advice seem well grounded. They are thinking about it.

In general, doctors don’t really appreciate how much variation there is in terms of how kids respond to medicine, she says, or what can lead to autism. She says that autism is a combination of genetic tendency and exposure, and maybe some kids only need a tiny dose of a vaccination but maybe others need a lot, and that doctors don’t consider the individual differences. The age of the parents is a critical factor too, and when she got her tetanus shot years ago she developed an abscess, maybe that was a hint for genetic susceptibility in their family.  Maybe preservatives can trigger a genetic tendency, she says, particularly in fair-headed blue-eyed people; maybe thimerosal can be a trigger too. Consider that village in Africa that had no history of autism until they started doing vaccinations, so you have to look at what changed, look at that stuff they put in newborns’ eyes to prevent transmission of syphilis.  We shouldn’t vaccinate so young, she says, those tiny little bodies cannot handle that much, and we should definitely do allergy tests before vaccinating, and never should put more than one vaccination in the same shot.  She compares autism to the idea of a “flash point” in a house fire, the time at which factors have finally built up enough to cause everything to explode.

As the mom in particular you are responsible for most of the care of raising your child, and maybe you could look back and worry about what triggers kicked in the genetic components.  Maybe it was the mercury. Maybe it was the Omega 3 fatty acids because of all the tuna she ate when pregnant. Maybe it was the nebulizing treatment he got in the ER at 9 months due to the croup.  Maybe it was the pesticide from the tree farm that was near their house in the mountains.  She says she wonders “would we really be better off if we knew the trigger or cause? …  But maybe it would just make it worse, and cause more self-blame…. Samuel doesn’t have autism because God is mad at him or us, and God is not interested in a 50/50 partnership, but a unity with us,” she says. You have to take each day as it comes.

God gives each of us a core persona, she says.  Samuel’s is joy.  His joy has taught us a lot about looking at things in a different perspective.  It’s his gift.  God has given him a gift of a little word every once in a while, and it’s His way of encouraging us as a family.  She tells the story of being overwhelmed one day, bustling around the house, when Samuel piped up with one of his rare coherent and complete thoughts, “You know it’s not about you, mom.”  This provided such immense comfort, this reminder from her special child, the perspective on the greater world, the reminder to calm down, the reminder that God was with them in every moment.  She tells this story twice.

God seems to be more comforting than the church. Sometimes people in the congregation ask how Samuel is doing, but that never translates into voluntary support outside of service.  There was talk of a Sunday School for EC, but nothing came of it.  Maybe the excess of information out there about autism makes people afraid to step in, she thinks. At one point she joined a prayer group in Virginia, and at another point she got involved in a group called “Reality Ministries,” but these support networks seem to have come and gone.  On the day to day level, it is just her, God, and Samuel.

Samuel’s older brother Matthew sits nearby doing homework during our meeting.  He is polite but more awkward than normal for an 18 or 19-year-old.  We wonder what his life has been like growing up in a home where his brother necessarily would’ve captivated so much of the attention, but are too shy to ask.  His father is silent in an adjacent room during our entire meeting.  Mrs. Hoffman is thankful that her husband’s job gives them health insurance; she doesn’t know anybody who was forced to get Obamacare for a child with autism.  Samuel doesn’t seem to have required much assistance from the traditional healthcare system, though.  She has, on the other hand; she mentions her own struggle with cancer a few years ago, but quickly pivots to talking about getting Samuel on the Medicaid cafeteria plan.

Services in this county are limited, nothing like Oregon, she says. They have big problems with staffing and are not responding adequately to make up for these needs; in theory they have good ancillary services but are not able to provide staffing in homes, or in community skill building.  After a recent change, their ancillary services are now managed by Cardinal Innovations, a program in which they are given a yearly budget to apply toward services of their choice.  She is more concerned with ancillary services, public school funding, and social programs than insurance coverage. Given his birthday, Samuel can continue school until he is 22, but she is concerned that the school will not be able to prepare him for the next part of his life. His school used to have off-site training for EC to gain real-world skills, but that program was discontinued too.  She says the goal is “to prepare Samuel for something he can contribute to but also get joy and satisfaction from.”  They have thought about changing schools, but change is hard.

She says the world market is obviously approaching a crisis.  She searches for groups that serve the poor or less-able but do not rely on federal or state monetary support, so that when the market collapses, these groups will survive.  She says that the social systems set in place by the government have caused the decline of the local and church and parachurch support systems.  Fortunately, groups like the NACD are available to help people like her, to fill in the gaps where she feels the medical system has failed her, or is not to be trusted.  In her timeline, despite the physical moves, changes in school system, struggles with family, deficits in ancillary services, and lack of church support, the constants are God and the NACD, whose website lists no medical doctor but an evaluation fee of $950 and additional fees of $3000 a year, not including supplemental products.  She says she got involved with the NACD when Samuel was 3 or 4; he is now 17.

The short bus pulls up to the top of the long driveway around 5; she is very careful to get up and meet Samuel outside so he would not be startled by the presence of strangers as he walks in.  Routine is very important she says; he will come in and change clothes right away.  She makes his special vitamin drink immediately and shows us the box from Switzerland; she perks up when she talks about the benefits of the new supplements they are trying now.  Samuel is taller than his mother; they are both thin.  She seems small beside him.  He has the expected size and body hair of a 17-year-old; if you saw him in a picture you might not think he is anything other than “neurotypical,” or that he rarely engages in even the briefest of two way conversations.  Oddly, there are no pictures on display in the house, anywhere.  The walls are so bare that it’s easy to think they just moved in, or just painted.  Perhaps Samuel doesn’t like them.  He mutters to himself as he goes about his after-school routine, and quickly changes into gym shorts and a T-shirt and drinks his special drink.  The plastic band around his ankle looks like a GPS monitor.

 

 

 

 

 

* All names have been changed to protect privacy.