Book Review: On Their Own

Anne Ford has fol­lowed up her nar­ra­tive about rais­ing a child with learn­ing dis­abil­i­ties, Laugh­ing Alle­gra, with On Their Own: Cre­at­ing an Inde­pen­dent Future for Your Adult Child with Learn­ing Dis­abil­i­ties and ADHD. Her sec­ond work is the con­tin­u­a­tion of her col­lec­tion of prac­ti­cal guid­ance, resource mate­r­ial, and per­sonal experiences.

If you have raised a chil­dren or lived with another fam­ily mem­ber who has one or more learn­ing dis­abil­i­ties, there are a mul­ti­tude of “Me, too!” moments await­ing you in this vol­ume. As Ford explains at the out­set, it is dif­fi­cult to define learn­ing dis­abil­i­ties with any degree of pre­ci­sion — and harder still for per­sons with no expe­ri­ence to under­stand and relate to the expe­ri­ences of either the indi­vid­ual with the dis­abil­i­ties or their fam­ily. Yet learn­ing dis­abil­i­ties are extremely com­mon, in vary­ing degrees.

Ford takes an admirable stab at artic­u­lat­ing a work­ing def­i­n­i­tion in order to give her read­ers a frame of ref­er­ence: The term “learn­ing dis­abil­i­ties” (or, to use Ford’s abbre­vi­a­tion, sim­ply “LD”) is “not any one thing, but rather an umbrella term used to describe any num­ber of behav­iors that are unex­pected in indi­vid­u­als who are accom­plished in learn­ing in other ways.” She explains:

LD affects people’s abil­ity to inter­pret what they see and hear, or their abil­ity to link infor­ma­tion from dif­fer­ent parts of the brain, because their brain is “wired” a lit­tle dif­fer­ently. These dif­fer­ences can show up as spe­cific dif­fi­cul­ties with spo­ken and writ­ten lan­guage, with coör­di­na­tion, with self-control, or with pay­ing atten­tion. Peo­ple can have learn­ing dis­abil­i­ties in read­ing, writ­ing, and math, and in pro­cess­ing infor­ma­tion (and they can have dif­fi­cul­ties in one of these areas, two of them, or all of them). Most chil­dren and adults with LD can read words, but they may not always com­pre­hend the mean­ing of the words. Learn­ing dis­abil­i­ties can reach into per­sonal rela­tion­ships, since they often cause dif­fi­culty in com­mon, every­day inter­ac­tions with others.

With that foun­da­tion, Ford dis­cusses a broad spec­trum of ways in which per­sons with LD face chal­lenges to their abil­ity to live inde­pen­dently – and cause con­ster­na­tion for those who love them and want them to suc­ceed. For instance, she addresses the con­flict­ing emo­tions of par­ents who can­not break the well-establishing pat­tern of wor­ry­ing about their child as they send him/her out into the world, yet yearn to expe­ri­ence the nat­ural pro­gres­sion of par­ent­ing, i.e., a life free from car­ing for chil­dren. Indeed, she describes worry as “the dom­i­nat­ing emo­tion most par­ents feel about an LD child. Yes, there is joy, hap­pi­ness, fear, anger, guilt, pride, all the thousand-and-one pos­i­tive and neg­a­tive emo­tions that make them­selves known at one time or another; but worry always seems to hang around and form an under­cur­rent to all the other emo­tions. “Lessons Learned — A Check­list of Real­i­ties” is a valu­able descrip­tion of lessons learned through par­ent­ing her daugh­ter with which every other par­ent of a child with LD can empathize and relate.

Sib­lings face unique obsta­cles and emo­tional road­blocks in rela­tion­ship to the child with LD who, of neces­sity, often receives more atten­tion from the par­ent, lead­ing to resent­ment, jeal­ousy and, inevitably, guilt about those feel­ings. Because some per­sons with severe forms of LD will never be able to live entirely on their own with no super­vi­sion at all, sib­lings carry the bur­den of know­ing that they will one day be called upon to take over care­giver respon­si­bil­i­ties, while par­ents fret about aging and dying, leav­ing their other chil­dren sad­dled with the task of car­ing for their sib­ling. Ford, in her can­did but touch­ing writ­ing style, describes explain­ing to her elder child that he would one day be left to be his sister’s “guardian, her friend, and even a father fig­ure.” She wisely rec­om­mends that par­ents pre­pare a mas­ter file con­tain­ing all infor­ma­tion that will be needed by the sib­ling and inform them of its con­tents and loca­tion. Hon­est, open com­mu­ni­ca­tion, acknowl­edg­ing each fam­ily member’s con­flict­ing feel­ings can ease the even­tual tran­si­tion of care giv­ing responsibilities.

The mid­dle sec­tion of the book drags, bogged down by the fact that Ford has not delved deeply enough into the areas where she pro­vides advice for her writ­ing to be of much use to any­one who has more than a pass­ing knowl­edge of what it is like to live with an indi­vid­ual with LD. For those folks, her writ­ing here becomes sopho­moric and tedious. For some­one who has no knowl­edge of these top­ics, how­ever, this sec­tion might serve as a use­ful start­ing point, but is lim­ited by its brevity and super­fi­cial treat­ment of issues such as decid­ing whether the indi­vid­ual with LD is capa­ble of attend­ing col­lege and/or obtain­ing and main­tain­ing mean­ing­ful employment.

In Ford’s defense, the deci­sion about whether or not to include those chap­ters could not have been easy in light of the lim­i­ta­tions of this vol­ume — each one could inde­pen­dently be the topic of a whole book. Whether she included or omit­ted them, she would inevitably open her work up to this crit­i­cism. My rec­om­men­da­tion is that those chap­ters be used as ref­er­ence tools to the exten­tap­pro­pri­ate to the indi­vid­ual reader.

The most uplift­ing, inspir­ing, and, in my esti­ma­tion, valu­able part of the book is, how­ever, the final sec­tion enti­tled “Inter­views: Advice for Par­ents from Promi­nent Peo­ple with LD.” For instance, Sir Richard Bran­son describes grow­ing up think­ing “I was stu­pid. And I hap­pen to have bad eye­sight as well, and that was my other excuse. I had bad eye­sight and I thought I was stu­pid, so quite early on I had to com­pen­sate for it.” Although his learn­ing dis­abil­i­ties are mild, he recalls, “I would look at an exam paper and I might as well have been upside down.” At the age of 15, his frus­tra­tions fueled his entre­pre­neur­ial spirit – he left school to found a mag­a­zine and has never looked back. Mildly dyslexic, to this day, he takes notes dur­ing con­ver­sa­tions, and admits that he still gets his words “won­der­fully mud­dled up – some­times on tele­vi­sion.” His advice to par­ents of adult chil­dren with LD? Help them find work that they are well equipped for and enjoy.

Gas­ton Cap­eron, for­mer Gov­er­nor of West Vir­ginia and Pres­i­dent of the Col­lege Board; John Cham­bers, Pres­i­dent and CEO, Cisco Sys­tems; David Neele­man, Founder and CEO, Jet­Blue Air­ways; and Charles Schwab, Founder, Chair­man, and CEO, Charles Schwab & Co., all echo sim­i­lar expe­ri­ences and philoso­phies. Each describes feel­ing out of step with other chil­dren, believ­ing them­selves less capa­ble than oth­ers, and even­tu­ally, through per­se­ver­ance and the sup­port of pos­i­tive role mod­els, find­ing their own means of accom­mo­dat­ing their disabilities.

As Ford explains, “it’s all progress, not perfection.”

Liv­ing with LD or par­ent­ing a child with LD is an ongo­ing strug­gle, the details of which she has sum­ma­rized in a heart­felt, straight-forward, unapolo­getic man­ner. Some of the advice she offers is too sopho­moric for the savvy par­ent, but just right for those at the out­set of the jour­ney. But she never veers into self-pity, whin­ing, or com­plain­ing, even while openly shar­ing some of the frus­tra­tions she has expe­ri­enced over the years with her own daugh­ter. She empathizes with par­ents who may, in weak moments, be tempted to give up, but urges them to take a brief respite and con­tinue advo­cat­ing and car­ing for their chil­dren because the love, nur­tur­ing, and bound­less but restrained sup­port for an adult child with LD is vital to his/her abil­ity to live inde­pen­dently, con­sis­tent with his/her abilities.

Par­ents must learn to accept that the road twists in a dif­fer­ent direc­tion for them because their chil­dren have LD – “[W]e can never fully step back from their lives. Even though the cen­tral theme of this book is the neces­sity of learn­ing to let go, we know that chal­lenges and prob­lems do not end. We can learn to accept them and han­dle them, but we can never elim­i­nate them. We search for a sense of final­ity, but we never find it.” On Their Own will help par­ents and loved ones acknowl­edge, accept, and make peace with that fact.

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