My 10-year-old son Billy and I were headed to the local pond to go swimming, just the two of us, which we both love to do. We were ready, in the mid-July heat, with our suits already sticking to our skin. But in the beach parking lot, while pulling out our towels from the car, lightning flashed. I knew the lifeguards would close the beach. I told Billy we couldn’t go after all, and he hit me, hard.

A woman was walking by when it happened. She gave me such a horrible look that tears came to my eyes — the emotional pain overwhelmed me. What kind of terrible parent allowed a boy to hit her?  

I choked out, “He’s autistic,” and her face melted. I could see that she understood, and felt terrible for me. I’m not sure what was worse, the first look of judgment, or the second of pity. I cried all the way home. Decades later, I still remember the pain, not in my arm, but in my heart. 

How odd that I didn’t know the woman and never saw her again, yet I still cared so much. 

Irrational, of course, but for me, one of the hardest parts of raising a special child was the shame I felt — I know I shouldn’t have felt it, but I did — when others saw that my child was different, not up-to-snuff. The looks of kindness and sympathy that I got from other parents were almost unbearable. 

Thankfully I had the support of a strong family, who knew that Billy’s odd and sometimes aggressive behavior was not my fault — not caused by bad parenting, or by a home environment that sanctioned that kind of behavior. Early on, I learned how important it was to keep my relatives informed about what was going on with Billy. During the time that we were desperately seeking a cure, or at least a diagnosis, I shared all the news, and copies of every report, with my mother. She read everything thoroughly and helped me digest and understand them.

When I noticed that my dear and loving mother-in-law was making unhelpful comments, I realized that I was not being fair to her — I wasn’t telling her everything that I was telling my mom. From then on I sent her every report, and made sure that everything I shared with Grandma Dody, I shared with Grandma Patsy. 

It made a huge difference. By keeping my mother-in-law in the know, I got another wonderful support person on my team, who I could talk to and commiserate with. Lesson learned. Information is money, access, and power. But most importantly, it is inclusive. If we don’t tell the people we love what is going on, they are shut out. If we don’t tell our friends, they drift away.

But what about our wider circle of friends, our community? The irony is that if we don’t tell our friends, they drift away, but if we do, we may be unnecessarily labeling a child for life. Sharing information to the wider world is tricky business when you have a young child who is not developing normally. Stigma is very real, and can follow a person around. It so happens that there are a lot of different ways for a human being to develop, and it may be that the child is just fine — or with therapy will be just fine. The last thing a parent wants to do is label a child unnecessarily. So therapists are brought in, there are many sleepless nights, but not much is said to the outside world. The parents walk a tightrope.

Of the many things that have gotten easier as Billy and I have aged, the biggest one is that he is calmer now. A close second is that the shame has diminished. Now we know who we are and are no longer trying to be someone else. What a relief.

NAELA, the national trade association for special needs estate planners, has published Karen Mariscal’s survey of her favorite special needs parenting books and memoirs, below. They are heartbreaking, uplifting, full of love, and will make you cry. Enjoy!   Far From the Tree Parenting children with many different types of issues. If you read only one book on the subject of raising a special child, it should be this one. Andrew Solomon spent more than 10 years interviewing families who raised children with different needs, ranging from deafness, dwarfism, Down syndrome, autism, schizophrenia, multiple severe disabilities, to prodigies, transgender, children who were conceived in rape, or who became criminals. There is a riveting chapter for each. The parents in every category struggled but ultimately learned to overcome their biases and accept their child. Their individual experiences vary greatly — think of raising a transgender child versus raising one born with multiple handicaps — but they all find themselves in the predicament of having to parent a child who is very different from what they expected and who experiences life, particularly childhood, very differently than they did. Done right, parenting a special needs child is a recipe for personal growth.  Masterfully researched and beautifully written, Far from the Tree allows the reader to look into the lives of people who have parented children in the most challenging circumstances and are grateful for the experience. This is humanity at its best. Life as We Know It and Life as Jamie Knows It Down Syndrome/disability rights. Michael Bérubé’s excellent books about disability are not emotional memoirs. Rather, they discuss genetics, philosophy, language, and social policy as they relate to people with Down Syndrome and intellectual disabilities, while at the same time telling the story of raising his little boy Jamie. He dives deep into how language and culture can cast preconceptions about ability and disability and what is lost when we allow cultural norms to change the richness of human variation into defects. He struggles with the consequences of amniocentesis on Down Syndrome babies. And although he is pro-choice, he makes a compelling argument that people with intellectual disabilities play a fundamental role in creating a more humane, compassionate, and hospitable society. Much will be lost if we try to eliminate what is not disease, but rather simply aspects of human diversity and difference. The Siege and Exiting Nirvana Autism classics. Clara Clairborne Park wrote two classics on raising her autistic daughter, Jessy, first from birth to age 8, and then when Jessy was 40. Already a mother of three when Jessy was born, she was well aware that the problems were not in their parenting. Park is a superb writer with the approach of a scientist, carefully collecting data on her daughter’s behaviors and language and using it to find ways to reach her. She details the steps she took to mount a siege against her daughter’s attempts to shut out the outside world, also known as nirvana, without any real professional help since professional help was largely nonexistent in those days. These books are dated — the first was written in the 1960s — but the experience of parenting a high-needs autistic child is essentially the same and is brilliantly recorded. Loving Rachel and Rachel in the World Multiple disabilities. In Loving Rachel, Jane Bernstein tells with unflinching honesty about her difficulties with both parenting and marriage when Rachel was a baby. Rachel in the World picks up later and details Rachel’s transition period as she leaves school and becomes an independent adult. It ends when Rachel turns 22. Herculean efforts were required for Rachel to become an active member of society, with her own (supported) home and job. Rachel in the World helps us understand what many of our clients deal with as their children age. For Bernstein, it wasn’t easy — these books are not uplifting — but it turns out that it was worth it. Rachel is now 35, and Bernstein recently reported: Although the story is full of struggle, now I can say that all the effort spent on getting Rachel where she is has really paid off. Until COVID, her life was rich with work and activities, and even now that everything’s gone, she’s managed to hang in, mostly because the skills she learned have enabled her to have some satisfying at-home activities. Bernstein’s books are a testament to what is needed from society at large in order to take care of our adult intellectually disabled population: government support with housing, caregiving, supported employment, and day programs. Spelling Love With an X Fragile X. Author Clare Dunsford elegantly and honestly describes her life with her son, J.P., a charming young man diagnosed with Fragile X syndrome. The book is a blend of personal memoir and scientifically researched information about Fragile X. For Duns­ford, Fragile X was a family affair in that three of her four siblings were also carriers. Brimming with love, Spelling Love With an X both explains Fragile X and shares the insights of a compassionate scholar on motherhood and genetic inheritance.   Butterflies and Second Chances Mitochondrial disease. NAELA member Annette Hines, Esq., a special needs attorney and estate planner in Natick, Massachusetts, has written a book that powerfully describes, from beginning to end, how it feels to parent a severely disabled child. Elizabeth was born with a mitochondrial disease that would prevent her from walking or talking and would ultimately end her life at age 17, yet Elizabeth was the love of Hines’ life, and Hines’ descriptions of her amazing parenting journey hit me hard and deep. A shout-out to the role that Hines’ current husband, NAELA lawyer Mark Worthington, played in this. Mark is not only a brilliant lawyer but clearly has a heart of gold. He proves once again that angels come along when least expected. Making Peace with Autism and Autism Adulthood Autism. In Making Peace with Autism, Susan Senator describes how she initially battled her son Nat’s autism with all her might and then gradually came to accept him as he is. (This progression is unusually intense for parents of autistic children since they often don’t know the extent of their child’s disability for a number of years.) Autism Adulthood discusses adult life on the spectrum and provides important information on navigating the system. Raising a Rare Girl Baby with multiple disabilities. Heather Lanier is a poet, and it shows in this gem of a memoir about her experience of becoming a parent to a disabled child. In retrospect, Lanier ruefully admits that she was infused in the culture that expects people to have “superbabies” and was unprepared when it turned out that her daughter Fiona had a rare genetic syndrome that caused her to be profoundly disabled. Readers are the recipients of the wisdom she learned along the way. The book is insightful, sometimes funny, and ultimately uplifting, as Fiona heads off to kindergarten, walking on her own and excited to go. Hidden Valley Road Schizophrenia Don and Mimi Galvin had 12 children, and six of their sons had schizophrenia. Author Robert Kolker tells their family’s remarkable story weaving in scientific information about schizophrenia and the history of doctors’ and scientists’ attempts to understand it. This book shows the effects that this kind of disability can have not only on the parents but also on the unaffected siblings, some of whom were courageous in their support for their brothers. Karen Mariscal, Esq., a special needs estate planner in Wellesley, Massachusetts, is the mother of an intellectually disabled autistic adult son and an avid reader. Send the names of your favorite memoirs to Karen Mariscal at ­Karen@MariscalLaw.com.

Even before the pandemic, many of our adult children with ASD or intellectual disabilities said they wanted a girlfriend or boyfriend. Now that everything is opening up, love is in the air.

We all want love. Matchmaking is big business, given the pandemic and shows like “Million Dollar Matchmaker,” and “Indian Matchmaking.” The matchmakers apparently charge between $500 and $25,000 or more. It’s a jungle out there, and if it is tough for non-autistics, I can only imagine how it feels for those on the spectrum.

One of the sweetest shows out there is Love on the Spectrum, on Netflix. It’s a four-part documentary of young adults on the autism spectrum trying to find love. The characters melt your heart. They are so honest and are trying so hard. Sigh. A second season is supposedly coming soon.

So what is a lonely heart to do? If your adult child is on the spectrum, I recommend that they enroll in online or in-person coaching from AANE, see here. Also they may want to join an AANE support group, to talk about their efforts and maybe come up with a plan. See here. Another good idea is to enroll in the PEERS program, which is starting up in August, in person near the Bridgewater area, see here. Mary Fox, who runs the program, says dating is a hot topic, and 4 of the 16 sessions are about dating.

If your child is intellectually disabled, probably the best thing you can do is to make sure they are involved in various programming and recreation where they can meet people and interact. We run a Special Olympics Xtra Mile club in Wellesley that will start again in the fall, on Tuesdays at 7 p.m. — email me if you are interested.

All this talk of love reminds me of my very brief but hilarious encounter with Owen Suskind, star of Life, Animated: A Story of Sidekicks, Heroes, and Autism, by Ron Suskin. In his book, Suskind describes how he managed to connect with his autistic son, Owen, through Disney characters. Owen memorized dozens of Disney movies, and used the quotes to learn language and express himself. The book is a delight, as is the documentary movie: Life, Animated.

The Suskins gave a talk in Boston about their book, and although Ron did most of the talking, Owen spoke too. Owen was maybe 25 at the time, and most of what he talked about was his need for a girlfriend. I sat near the front, and Owen noticed me. As soon as the presentation was over, Owen made a bee-line for me and asked me about my child. I said he was a boy, and that was that. He immediately ran away to speak to someone else. No time for small talk — he was a man on a mission.

Ah. love.

The crisis in the direct care workforce for people with disabilities, largely due to inadequate pay, has been the Arc of Massachusetts’ number one concern for several years now. Covid has made it worse. Because of lack of staffing, many of our loved ones don’t have the services they need — they can’t find PCAs, and are still unable to return to their day programs after more than a year at home. Parents are frayed.

The Arc has issued a call to arms:

“This is the time. Years of minimal rate increases have resulted in chronic vacancies in direct care positions in our disability sector. Nationally, before COVID-19, turnover rates were higher than 40%. But add the Commonwealth’s red hot real estate market to the mix, and you can imagine the crisis many families, individuals, and agencies face.”

We need to fix this for now, and for the years to come. Not just with better wages, but with better use of technology and better training.

Below is an excerpt from a recent Boston Globe article, which does a great job highlighting the issue.

“Bonuses for dishwashers and ice cream scoopers — so why not for the disability workforce?

By Joan Vennochi, Globe Columnist, June 16, 2021

To deal with a post-pandemic labor shortage, employers are offering bonuses and raising wages to hire workers to wash dishes, scoop ice cream, and serve hamburgers.

When it comes to taking care of people with disabilities, the pay is low to start and, so far, unchanged by the same post-pandemic labor shortage. So far, the authority ultimately responsible for setting wages — the state of Massachusetts — hasn’t budged on increasing the current pay scale range of $15.53 to $16.50 an hour, which is about $32,000 a year. 

There are the direct care workers and personal care attendants who take care of the most intimate needs of the most vulnerable people. How can we possibly value these workers less than someone serving up Happy Meals?”

We need our legislators to act to boost the pay of the people who are so important to the care of our loved ones. For the full article, see  https://www.bostonglobe.com/2021/06/16/opinion/bonuses-dishwashers-ice-cream-scoopers-so-why-not-disability-workforce

Part of my practice involves representing parents who are seeking guardianship of their disabled adult child. Parents have to consider whether their child will need a guardian after they become adults in the eyes of the law, which is at age 18.

Guardianship is not something that should be entered into lightly. Just like we used to routinely institutionalize people with intellectual disabilities, we used to automatically assign them legal guardians when they turned 18, with a knee-jerk assumption that they couldn’t make their own decisions.

Those days are gone. We now recognize that everyone should be allowed the ability to make their own choices, to the extent possible. Atul Gawande said, “The battle of being mortal is the battle to maintain the integrity of one’s life,” and this applies equally to the aged and the disabled.

Now we need to think seriously about whether guardianship is necessary. Sometimes the decision is easy: those of us who have children with significant intellectual impairments know that when our child becomes an adult, he or she will need to have a legal guardian appointed. My son Billy is a good example. He can’t speak or understand language beyond basic words, nor does he understand his options, so he needs someone to make decisions for him. We do our best to make sure the decisions are what he wants, although in Billy’s case it is a bit of a guessing game.

On the other end of the spectrum, sometimes it is clear that the child does not need a guardian. A person who is competent to make their own decisions, with help from others (just like the rest of us), should be able to do so. As a parent once said to me about her son on the spectrum, “He should be able to make his own mistakes, just like the rest of us.”

But in between these extremes, for children who are capable of understanding basic medical and educational issues, the question of guardianship can be quite difficult. What if an emergency comes up, and the child refuses to consent to surgery? Or what if someone tries to take advantage of her innocence and gullibility? We do not want to take a person’s rights away from them if there are better alternatives, and we want to do what we can to promote their independence, including learning how to make decisions, but we also want to keep them safe.

If the child seems like they may be fine without a guardian, but there are concerns, I might ask the parents whether they would be comfortable putting off the decision, and see how things go. There is no legal reason why the guardianship petition has to be filed at age 18. If there does come a time when it appears that guardianship is necessary, we can file then. But waiting has risks that need to be considered.

I also recommend that parents speak to the child’s clinicians about the issue. It is, after all, the clinicians (usually their medical doctor or psychologist) who will be signing the documents in support of guardianship. If they feel, after talking to you and your child, that the child doesn’t need it, that is important to know.

These in-between people may want to consider supported decision making (SDM) if and when it becomes legally enforceable in Massachusetts. SDM is an alternative to guardianship, where people use trusted friends, family members, and professionals to help them understand the situations and choices they face, so they may make their own decisions. For those who are working towards self-determination, this might be the way to go.

SDM is part of the national effort of guardianship reform, to move our society away from paternal protection of persons with cognitive disabilities, and instead provide assistance for the people who need it. In a supported decision making agreement, the decision-maker (the child) enters into an agreement with her supporters (e.g. family, friends, teachers or clinicians), to help the person make life decisions about where she wants to live and work, and with whom, and the services, supports, financial decisions, and medical care the person wants to receive.

The Arc of Massachusetts is advocating for a bill to make SDM agreements legally enforceable, and to require schools to tell parents about the SDM option. If the bill passes, doctors would be required to recognize the agreements, and would not be liable if they follow the decision made in accordance with the SDM agreement.

Until the bill is passed, you cannot rely on the enforceability of an SDM agreement, and guardianship might be necessary. But thinking through the SDM issues, and who are your child’s supporters, could be a useful exercise for everyone.

(I note that a Power of Attorney and Health Care Proxy are not substitutes for guardianship. Everyone over the age of 18 who is competent to sign a POA and HCP should do so. These documents come into play when a person is no longer competent to make decisions for themselves. The minute the person regains competency, the documents are moot, and the person is again in charge of their own life. In other words, a HCP and POA are helpful when a person loses competency, but not when they are the same as they were when they signed the documents. In addition, unlike guardianship, a HCP and POA can be revoked at any time, for any reason.)

Whether or not your child is under guardianship, the child should be allowed to participate in all decisions that affect him. It’s his life, after all.

I love books about people with disabilities (and their parents’ memoirs). This is part of my ongoing series discussing the books on this topic that I have loved most.

Probably my favorite nonfiction book of all time is Andrew Solomon’s Far From the Tree: Parents, Children and the Search for Identity, Solomon, who is a brilliant writer, spent over ten years doing research for the book, interviewing families whose children had deafness, dwarfism, Down syndrome, autism, schizophrenia, multiple severe disabilities, children who are prodigies, who are conceived in rape, who become criminals, and who are transgender. There is a different chapter for each of these, and they are all riveting.

The experience of these families is universal not only in their love for their children, but in their struggles with coming to terms with the fact that their children are not like them — they have what Solomon calls different vertical identities; i.e. identifies passed down from parents to children. He contrasts this with horizontal identities, which are identities we share with our peers, such as the deaf or dwarfism communities.

All parents have to come to terms with their children, to some degree. When we first think about becoming parents, we imagine that our children will be, not exact clones, but people who are slightly better than us in every way. What we usually get is something different. We all have to get to know our children for who they really are. It is a shock, for sure. We special parents have just a more extreme shock, and usually it comes much earlier, often starting at birth.

Our capacity to love can expand from these experiences. Listen to the author describe the positive comments of heartbroken parents of the severely handicapped, who go through incredible difficulties trying to raise their child:

“For some parents of children with horizontal identities, acceptance reaches its apogee when parents conclude that while they supposed that they were pinioned by a great and catastrophic loss of hope, they were in fact falling in love with someone they didn’t yet know enough to want. As such parents look back, they see how every stage of loving their child has enriched them in ways they never would have conceived, ways that are incalculably precious. Rumi said that the light enters you in the bandaged place. This book’s conundrum is that most of the families described here have ended up grateful for experiences they would have done anything to avoid.”

Solomon was not a parent when he started the process of writing the book, and may have written a better book because of it. He describes the parenting journey with a clear eye and without sentimentality. I especially loved how he describes the positives of having a disabled child, because I feel that this happened to me:

“Having a severely challenging child intensifies life. The lows are almost always very low; the highs are sometimes very high. It takes an act of will to grow from loss: the disruption provides the opportunity for growth, not the growth itself. Constant high levels of stress may age parents of profoundly disabled children, making them crankier and more vulnerable, yet some cultivate a deep and abiding resilience. It turns out they have grown more skilled at handling other life stresses. Even as the downside wears you thin. the upside keeps on giving. The more difficult the problem, the more profound these positives may be.

This doesn’t happen with the milder cases.

“Mothers reporting higher levels of caregiving demands for their child with intellectual disability also reported more personal growth and maturity.“ the Canadian scholar Dick Sobsey, himself the father of a disabled child, and his colleague Kate Scorgic write, “Parents of children with relatively mild disabilities may be more likely to adjust or accommodate by making minor or superficial changes. Conversely, parents of children with more severe disabilities may find it more difficult or impossible to go on with their lives as before and, as a result, may be more likely to undergo transformations.”

“Positive transformations are achieved when initial dis-equilibrium, which is traumatic and brief, gives way to psychic reorganization, which is gradual and enduring. It would appear to be true that what doesn’t kill you makes you stronger.”

It is both amusing and honest that the parents Solomon interviewed are not united with each other. They all tended to think that their particular problem was not as bad as the others:

“Almost everyone I interviewed was to some degree put off by the chapters in this book other than his or her own. Deaf people didn’t want to be compared to people with schizophrenia; some parents of schizophrenics were creeped out by dwarfs; criminals couldn’t abide the idea that they had anything in common with transgender people.…The compulsion to build such hierarchies persist even among those people, all of whom have been harmed by them”.

His riveting chapter on the parents of the Columbine killers Eric Harris and Dylan Klebold will stay with me always. Solomon spent a lot of time with the Klebolds, who appeared to be totally normal parents, and were as horrified as anyone about what had happened. “Among the many families I’ve met in writing this book, the Klebolds are among those I would be most game to join,” he wrote.

Sue Klebold’s comments say it all: “Over time, I’ve come to feel that, for myself, I am glad I had kids and glad I had the kids I did, because the love for them — even at the price of this pain– has been the single greatest joy of my life.. . .I know it would have been better for the world if Dyland had never been born. But I believe it would not have been better for me.”

What a testament to the power of love. To me, all of the parents in Solomon’s book represent humanity at its best. I can only hope to be so brave.