Jared

Our Angel-Child: A Special Being & Life Focus

This webpage narrates the essence of Linda’s life for and with their special needs son, Jared. Several of the passages on this page are also presented in the Timeline but are combined here for a unified flow.

The start and the finish are the same – Jared was from the moment he was born special in all the good meanings of the word, and he remained so his entire life.  He did require an incredible amount of Linda’s time and energy, emotional, psychic, and physical. In some ways, he dominated Linda’s life, and she structured her every day and every element for and around him. But never did she bemoan or complain… And the being he was, how and who he became, was its own incentive and reward.

Conception & Birth

Schedules were tight and opportunities few in those years, and Linda and Paul felt pretty sure when and where they conceived Jared, their soon-to-be second son. They remembered a small rest stop outside Culpeper as the place their golden soul decided to seek entry, or so they fantasized.

They delivered Jared at home in Ivy, a relatively easy and short labor compared to Noah’s. Paul’s hands caught and welcomed their son, though Lynn (a long-time friend of Linda’s and a fellow lay midwife and nurse) attended and helped.

Paul’s Personal Reflection

I remember my second son sliding into my hands, looking into Linda’s eyes, our hearts filled with joy. Noah, there for part of the process, self-selected not to stay for the whole thing and fell asleep in the next room. Jared gazed up to us with deep sweet soulful eyes, happy and content. Even at birth, and thereafter, he barely ever cried. I remarked to Linda that he either was a spiritually realized soul and the calmest baby I’d ever seen, or there was something wrong with him. That was a joke.

It turned out it wasn’t a joke. 

After they learned Jared had something going on, Linda expressed her certainty that EMF from high tension lines above them in Culpeper had at just the wrong time prevented one fertilized cell from touching another, that the massive high-voltage line near them caused it all. Years later they dove by that spot – no towers, no high tension lines, just a diminutive normal telephone pole with a transformer fifty yards off of the rest stop parking area.

Reasons or causes were not to be found, but Linda never stopped searching for one.

Red Flags

A sense of special protectiveness about Jared arose in them early on, even before they consciously knew anything was amiss. Despite Linda’s Judaic tradition and her parents’ adamant insistence on a bris, circumcision, they refused the ritual and procedure for Jared, especially after going through that with their firstborn. 

Sweet, rarely crying, but with keen eye contact that reassured, the first months after Jared’s birth were full of happiness. A medical school friend became Jared’s pediatrician, and when Jared reached his first birthday, the friend told them. Jared’s head was not growing commensurate with his age and his body, and he was not meeting his developmental “milestones”.  No one knew why, or what.

Moving to Asheville, a residency specialist in developmental and genetic disorders did a complete workup but identified nothing, nothing clearly abnormal except a brain CT that showed a slightly smaller brain mass. Although the limited DNA and genotype studies available in those days also showed nothing, Linda’s mother confided she had a brother who had been severely handicapped, institutionalized then lost in the Holocaust. Could there have been a familial connection not evident to the medical specialists? It did not matter, Jared was Jared, his own being.

Still, not having any specific diagnosis plagued Linda, and impelled her to forever search for a cause, hoping that if she found one, there might be a cure, or at least something they could do.

The kindly specialist, while not able to provide any guidance or specifics, offered one reassurance that stuck with them. Recognizing Linda’s unmistakable dedication and determination, he remarked how “Unlike most people, with you two, Jared will reach his full potential”. Linda held on to that and did her utmost to make sure that became true.

Early Childhood

Their boy did progress, just slowly. He weaned relatively easily and on time, and he accepted foods appropriate for his age. As he did not ever develop the pincer or pinch function, they needed to hand-feed him unless there was time and some foodstuff he could “hand rake” and hold on to munch. His grip even as an adult remains a full-fisted grasp. He never became fully toilet trained, although with appropriate attention and timing, he eventually had “accidents” only intermittently, and they learned to spot and predict.

Also, he did not walk until age 7. Instead, Jared “scooted” around on his butt and learned to crawl. Around that time, though, he developed six words he began to speak! “Mama” was the big one. Hearing Jared say that word, even when a plaintive call, made Linda certain he had the capacity, and fired her determination to continue doing everything on earth to have him develop further. Alas and YAY, then Jared began to haltingly take steps, and as soon as he did, as soon as he could start locomoting to get things he wanted, he stopped speaking. Too much work when he could get something himself, Paul thought.  

He did continue to vocalize, though. And how! He developed a piercingly loud call, or yell. Alia, when an infant, mimicked or competed with him on how loud they could be, and when with other moms and babes, the calls sounded like a cacophony that Grandma described as “The Conifer Coyotes”.

Many an expert over the years, Speech Therapists, developmental specialists, all thought Jared profoundly “retarded”, but almost all when they began working with him determined his “receptive intelligence” as opposed to the ability to express himself was good, maybe even near- normal. Linda and Paul always felt so. Jared listens. He attends. He can be verbally convinced to do something he does not want to do if one takes the time to explain.

Through the years, Linda tried Digi boxes, a tablet-like device with pictures Jared could press to hear the word spoken aloud. They tried simple pointing at pictures. No good. He presumably felt his needs were met well enough, and going to such artificial lengths as using a damn box was totally unnecessary. One school counselor declared Jared had “Learned Helplessness Syndrome”, like his parents’ doting was holding him back. Other professionals scoffed at the notion, and reassured the worried parents that of course he needed the help they provided. Duh!

The Medical World Struggles

It was a process that took decades, and it never seemed to end, Linda’s battles and struggles for Jared.

As Jared grew, he learned to walk, but only with a Charlie Chaplin-like waddle. Over the years, his ankles and legs rotated outward, with an exaggerated duck-walk much worse on his right foot. Without orthopedic shoes he tilted and walked directly on the side of his ankle. They tried short and long-leg braces, built-up and minimal arch-supported shoes. PT didn’t help, so in 1997 his providers proposed tendon releases, cutting the tendons thought to be causing the misalignment, something there’s no taking back.

Something had to be done, though, so they believed, and Linda and Paul took the other option. A “simple” osteotomy, they cut the bones of his leg to rotate the leg into a more anatomically correct position, preserving all the tendons, then casting him.

Three months. Three months in a cast and wheelchair. The house required climbing an outside staircase; the climate in summer required frantic rushing inside through clouds of midges and mosquitoes, slamming the doors, then spending 15 minutes killing the SOBs who made it inside. Perching like miniature bats all over the upper walls and ceilings, the mosquitos waited before descending to bite. Or when they got to them right away, the rapacious insect beggars waited just to get smooshed. Standing on chairs, leaving blood splotches here and there which they’d then clean, a multiple-times daily ritual made far worse by the delay in moving Jared inside. So, they built Jared a plywood ramp to rush him up into the house and minimize exposure and bites.

Linda did that for the 3 months of him wearing a cast, and 3 months it took him to relearn to walk. He almost developed a horrible nerve condition called in those days Reflex Sympathetic Dystrophy, excruciating hypersensitivity to even light touch and mottling circulation which often progresses to contractures and debilitating pain. They thanked God every day then and since he escaped that outcome and was able to walk again.

It didn’t make much difference in the end. Over the years the leg rotated out and after seven years it was the same as before. But Lordie, did she try to get him better in every way imaginable.

Fighting The Good Fight – Finally A Diagnosis

After she learned of Jared’s “condition”, Linda developed into a ferocious advocate, unflagging though it surely exhausted her.

Against great social and political inertia, she never gave up. Browbeating and constantly challenging resistant school authorities in the four states to which they moved, she refused to have Jared warehoused into a custodial setting. In each locale, the struggle started over. It took time and immense energy, but she persevered. Jared got “mainstreamed” within the regular public school system but with his own special needs accommodated program, socializing him with his normative peers. Years later, schoolmates would come up to Jared in the grocery store and smilingly recall the school days they had together. Accommodation of special-needs children within schools is now the accepted standard.

As for the cause and a treatment for his condition, she labored just as ceaselessly to find out what was not right, and what they might do. Contacting support groups, she consulted alternative practitioners from macrobiotic gurus (one who blamed Jared’s condition on pot before she conceived), to the Monroe Institute who performed Hemi-Synch brain wave coordination with music headphones, to craniosacral massage/manipulation with dolphins.

The worst was “Doman-Delacato”, an intensive multiple-times daily movement routine to “pattern” the affected child, to overcome “non-circuits”. It was so consuming that their research found little success and a trail of broken marriages, as blame and “never give ups” in a marriage with a disabled child exceeded human and relationship tolerances. Yet, that too they tried until they learned of its failures.

Pressuring NIH, yes, she also did that! Indeed, through her investigations she made the diagnosis: Angleman Syndrome, formerly “The Happy Puppet Syndrome”. NIH did not at first believe her, but checked it out, and had a Grand Rounds acknowledging her research and educating their own august experts. Again, not that it made a huge practical difference, but it did encourage Linda that there was much they could do to have their angel-child fully experience and appreciate life.

The battle, however, seemed never-ending. Linda never faltered, though undoubtedly over the years it eroded her determination, bringing a certain resignation and practical acceptance of what could NOT be done for her precious offspring. But she kept trying, as admirable a trait as any of the abundant virtues she manifested.

She took him to the Florida Keys to receive cranial-sacral therapy while swimming with dolphins. They swam as a family with manatees, Linda feeling their gentle healing energy might make a difference. She tried acupuncture, herbs, approaches Paul never heard of, always seeking to expand Jared’s capabilities and his ability to experience life. She “waterproofed” him, taking him to special-needs swimming lessons to be able to hold his breath, grab the poolside, even lightly tread water, all in case he fell in somewhere he would not go down like a rock. She took him to special horseback riding lessons where he eventually earned a trophy!

As or more important, they took Jared everywhere possible. Float and raft trips; camping and backpacking, even carrying young Jared on their backs. Car trips and air travel to Alaska and China, to the Caribbean and the South Pacific; to Mexico and Europe – they took him everywhere until Jared set his own limits on what he’d put up with. “I was born a travelling man…” Almond Brothers could have been his theme song, and Paul joked that Jared would stay in a moving car listening to music until his arms and legs fell off!

On one rafting whitewater trip to Big Bend on the Rio Grande, Jared rebelled. Crying softly but constantly, refusing food or drink, days away from anywhere civilized, Paul had thoughts of horror that he’d get dehydrated or worse. He envisioned the headlines: “Foolish physician imperils handicapped son!”, or worse! The only place on the river they were running where the road reached the beach was 30 miles from anything else. Frantic, Paul leaped ashore and began a desperate walk-hike-run while Tom and Alia remained with Jared, on shore and shaded in a tent at least, but still refusing food, still horribly unhappy. A car picked him up, he got their jeep and raced back to the riverbank. Immediately upon reaching the AC and TV of the hotel, Jared had three milkshakes, smiled and ate heartily, and slept like a lamb. No residual effect. Evidently, he simply had enough, and made his will known. That, he did!

After this, and as his parents aged and he became settled into a reliable day program, there were more occasions that Jared stayed behind, respite care or a dear friend flying in to care for him while she was away. Reluctantly, but strongly encouraged by his providers, three times over 15 years they tried a nursing home for respite care, Alia and friends stopping by daily texted or emailed how he was OK. But wracked by guilt, intrusive worries almost spoiled the away-time, and upon their return, Jared seemed sullen, or at least quite put out, and took a week or so to return to his usual darling demeanor. Clearly, he didn’t like it, and just as clear, they didn’t either. No more of that!

All Linda’s heroic efforts worked, really. Because of her unflagging efforts and attention, her love and belief in his potential, Jared has lived a charmed and expansive life, his enjoyment and his own determination enriching their lives, no matter how limited and consuming the caring for him.

A match made in Heaven…

Later Years

As Linda sailed out and on with her own life sans marriage, Paul sought to have Jared more. Investigating a job in Guam, he proposed moving there with Jared for a year or two. Linda fretted about but dealt with the constraints in her life and travel aspirations due to Jared, but clearly, she remained determined to keep him. Surprisingly, or not, she proclaimed to Paul that the very thought of Jared moving away made her “nauseous”.

It became an incremental process, Paul first doing every other weekend, then 3-day weekends, then most weekends – it gave her some time and some break. The last seven years Linda lived Paul took Jared with him on his own trips for weeks at a time, several months each year, occasions Linda then planned for her own extended and far-afield excursions.  On those trips where Paul did not travel, he stayed in her home while she was away to tend Jared. But he never achieved parity in the sense that it was Linda who still and always remained Jared’s principal caregiver, his champion and hero.

The Last Years

They agreed only at a relatively late date to set up a Special Needs Trust Fund for Jared, something they’d tried and waffled about for years. Linda searched the world over, in the US, France and other locations abroad for a community that could accept and care for Jared when they became old and could not. No good. Jared simply had too many needs and would always need a one-on-one attendant, something no community offered, at least none of affordable expense below the “Rain Man” level of care. Yet, the prospect of a nursing home haunted them both. Still hoping and searching, Covid hit.

At first it appeared a blessing to Linda, staying home with her “Mr. Man” Jared, together all day, her diving deep into her CBD academic program. However, through no fault of her own or any lack of effort, also like many peoples, this was not good for Jared, and he had major setbacks in his capabilities.

As the year went on, she less and less took Jared out and around, and his functionality regressed, especially walking independently.  His sleep became erratic, and he ate only in fits and starts, no regularity. It took until early in 2021 for things to gel and make sense – her diagnosis, his reaction. Later they wondered if it was Jared registering psychic distress at what undoubtedly was occurring within Linda’s body, or just general stress.

But it got their attention, eventually.

The last year of Linda’s life Paul essentially moved in and took over care of their man entirely. He loved it, always had, even though there was no choice.  Between caring for Jared, then more and more focusing on Linda, work became impossible, and Paul gave up his practice and entered a forced retirement. That was fine with him, except fiscally, neither of them had much of a retirement at all.

After Linda passed, Jared moved up to Conifer with Paul. Paul joked that again it was a match made in Heaven. How many people could have a companion who never argues, is always sweet and mostly quiet, likes everything he does, and literally emanates love and spirit? Not anyone he knew!

Paul’s hope and intent now is to perhaps find some very part time work, but mostly just to hang out, to take Jared out and around to parks and wild country they both love, and to relish and give thanks for all Linda did to have brought Jared so far, and for such a smooth handoff to Paul of their special son.

Blessed already beyond belief, given continued good health (prayers most copious!), who could ask for more?

The remnants of the Rambling Raford Gang will ramble on.

Jared’s Trust Fund

Linda did not want a service, so traditional gestures cannot serve as expressions of condolence from those who loved her. Because her son, Jared, was central to her life and heart, those who wish to express their feelings for Linda are encouraged instead to send a contribution to the Jared Strongheart Raford Special Needs Trust Fund.