Topic: For Families & Caregivers

Laura Slatkin is the CEO of NEST Fragrances, a luxury home fragrance company. NEST Fragrances is a luxury lifestyle brand for scent lovers that includes candles, diffusers, and fine fragrance. Outside the world of fragrance, Laura is a mother and an advocate. In 1999, shortly after giving birth to twins, Alexandra and David, the Slatkins’ son was diagnosed with severe autism. In 2003, along with her husband, Harry, and closest colleagues, she co-founded NEXT for AUTISM, an organization that transforms the national landscape of services for people with autism by strategically designing, launching and supporting innovative programs.

In addition to serving as Board Chair of NEXT for AUTISM, Laura serves on the Board of Directors of Autism Speaks, New York Center for Autism (NYCA), NYCA Charter School, New England Center for Children and the Henry Street Settlement House. She also serves on the Board of Trustees of Cold Spring Harbor Laboratory and on the Board of Directors of Columbia University Department of Psychiatry, Hunter College Autism Research and Policy Board, and the Henry Street Settlement House. Laura is also involved with the Alzheimer’s initiative.

Interviewed by our Different & Able President and Founder, Alexandra Nicklas, Laura shares David’s story and his diagnosis and challenges with nonverbal autism. She also discusses David’s communication strategies, how David is burgeoning into his adult life, and why her scent Apple Blossom is near and dear to her heart. In addition, Laura speaks about the future focus of NEXT for AUTISM, which is now focusing on changing the standard for how adults with autism thrive. As the website states, “NEXT for AUTISM addresses the needs of people with autism and their families across the country, right now.”

Kelly Cervantes is chairwoman-elect for the non-profit organization CURE Epilepsy, which promotes and funds patient-focused research to discover a cure for epilepsy. Kelly also hosts the podcast/videocast, “Seizing Life,” dedicated to encouraging empathy, hope, and support through personal stories pertaining to epilepsy and a cure for the neurological disorder. In addition to these positions, Kelly also organizes fundraising campaigns, such as the My Shot at Epilepsy campaign that she spearheaded with her husband Miguel, writes a blog entitled “Inchstones,” and speaks at epilepsy events nationwide. Epilepsy was not always a cornerstone in Kelly’s life.

In 2015, Kelly and Miguel welcomed a baby girl, Adelaide Grace, to their family, which already included their son, Jackson. When Adelaide was seven months old, she was diagnosed with epilepsy and eventually, infantile spasms, a severe form of childhood epilepsy. With Miguel starring as Alexander Hamilton in Hamilton: An American Musical the family moved to Chicago and Kelly became a stay at home mom and Adelaide’s primary caregiver. Kelly and Miguel spent three years with their incredible little girl. Sadly, Adelaide passed away on October 12, 2019, five days before her fourth birthday, from an unknown neuro-degenerative condition.

In the interview with our Different & Able President and Founder, Alexandra Nicklas, Kelly shares the story of her daughter, Adelaide. Heartbroken, but determined; Kelly chooses to celebrate Adelaide’s life each day, fighting for a cure in memory of her daughter. Adelaide would have celebrated her fifth birthday on October 17, 2020. Even though Adelaide is no longer with us, her journey inspires us to find a cure. Happy Birthday, Adelaide.

Lindsay Ganci lives and works in Port Washington, New York with her husband, Alec, their daughters Ruby and Jayne, and their dog, Latke. Lindsay has held many roles in her professional and personal life, yet none has been more rewarding and inspiring than that of a mom. An advocate for unique abilities, Lindsay created Hear with Ruby, a movement with the goal of advocating for and supporting families of children with hearing loss.

In the interview with our Different & Able President and Founder, Alexandra Nicklas, Lindsay discusses how her family discovered Ruby’s hearing loss at the very beginning of the pandemic. Ruby was faced with the challenge of not only hearing her world fully, but the fact that it was difficult for her to communicate with others wearing masks. Before the pandemic, Ruby was able to rely on speechreading; the mandated masks that covered one’s mouth now caused Ruby to request, “Move your mask. I can’t hear what you’re saying.” Lindsay expresses the happiness she felt after Ruby received her hearing aids, knowing that Ruby was able to listen to the world and share sound-filled experiences. Today Ruby uses her “super ears” to give her new opportunities to hear. The Ganci family, through acceptance and celebration of uniqueness, shares Ruby’s story. They continue to raise awareness about hearing loss and help other children receive the hearing aids they need to hear, like Ruby.

Judith Newman is a mother, an American journalist, and author. She received a Bachelor of Arts degree from Wesleyan University and a Master of Arts degree in English and Comparative Literature from Columbia University. Judith’s work has run in more than fifty publications such as, Vanity Fair, Harper’s Bazaar, The Wall Street Journal, Vogue, Redbook, GQ, Marie Claire and Cosmopolitan. She is a regular contributor for The New York Times Style Section and People, and is a contributing editor to Allure and Prevention. Her books include the 2004 memoir, You Make Me Feel Like an Unnatural Woman: The Diary of a New (Older) Mother and To Siri with Love: A Mother, Her Autistic Son, and the Kindness of Machines in 2017. In this most recent work, Judith pens an intimate, loving and emotional story about her two sons, Gus, who has autism, and his neuro-typical twin brother, Henry.

In the written interview below, Different & Able and Judith, along with Gus’ input, delve into a question and answer session about autism, family, and writing. Judith’s answers aid others in relating to the parental experience of raising a child with autism. Her words presented in this interview support others in feeling more comfortable and accepting of those with a difference. Judith states, “Love the child you have and meet them wherever they are.”

1. D&A: We know that not all autism is the same, and neither is every child with autism. Can you tell us about Gus’ diagnosis of autism? How did you find out Gus had autism and at what age was Gus when he was diagnosed?

JN: Gus was probably six when he was diagnosed, but in retrospect it was pretty obvious from the time he was three or four. It is not that he did not speak; he did. But he did not have back-and-forth conversations; it was more like long monologues that might be directed towards a person, and then again, might be directed towards the closet. He and his twin were born prematurely; he was tiny, had low muscle tone, and was an easy baby – too easy. Being undemanding is not necessarily a good thing, because it may mean your baby is not doing the things a baby needs to do to be frustrated and then learn something new. But at any rate, it was pretty obvious he was different, and when he was little I was constantly asking people “Do you think he is autistic”? I hoped to get the answer, “No.” Just like when you ask people, “Do I look fat in these jeans”? I mean, do you really want the answer?

2. D&A: What are Gus’ areas of strength? How does he handle obstacles in his life?

JN: He is very musical, though he still resists reading music; his piano lessons consist of hearing his teacher play a song, and then Gus playing it back (not in a savant way…he just hears it, and then practices.) His memory is also fantastic — as I learned from a bitter experience when he saw and memorized my credit card number. (He is deeply generous and yet still very naïve, and the word ‘scammer’ has not quite sunk in.) Thankfully, he has outgrown his early coping mechanism when things did not go his way, which was to hold his breath until he almost passed out. I just walked into his room and asked him about how he handles obstacles. He said, “I advocate for myself.”

3. D&A: As a mother, how did/do you handle unsolicited advice on how to raise a child with autism?

JN: I start with the premise that people are trying to help me, and I listen. Sometimes I’m inwardly rolling my eyes (eg, every conversation that contains the phrase “gluten free”), but sometimes I actually learn something.

4. D&A: There is a lot of attention around Gus. How did Henry, Gus’ twin brother, handle this dynamic, as sometimes neurotypical siblings can get lost in the shuffle?

JN: This is so true, and when they were younger there was no question Henry could be embarrassed, grossed out, and/or angry; but many of these emotions were really a way of expressing worry. When their father died three years ago, Henry, while still worrying, began to understand that sure, he did bear some responsibility for his brother – but that ultimately that was okay; which does not stop him from being a competitive sibling.

5. D&A: There is a lot of misinformation about autism. In your opinion, what are some things that people misunderstand about autism?

JN: Oy, all these shows like The Good Doctor, where autistic people are these geniuses who are unfeeling, robotic. Autism involves a dysregulation of emotion, not an absence of it. Gus and his friends may not always react to things exactly like you or me i.e., putting themselves in someone else’s shoes or understanding other people’s perspectives. It is a work in progress for Gus and some of his pals; they are among the most feeling people I know.

6. D&A: Can you share a bit about your heartfelt memoir, To Siri with Love: A Mother, Her Autistic Son, and the Kindness of Machines?

JN: It started with this essay that I wrote in The New York Times that went viral. (Please see the link below the Q & A for this article). I wanted to explore how technology helps those with communication dysfunctions, like my son, reach out to the world and connect. Then, when I realized I did not know what I was talking about and was not about to become an expert in all sorts of whiz-bang technology that I did not understand, it became a family memoir about raising an ‘average’ kid on the spectrum. These memoirs tend to be heartfelt stories about the extremes – the NASA scientist or the kids without language and with extreme behaviors. That was not the person living in my home, nor is it the person living in most people’s homes. So I thought this book would resonate. Also, I wanted it to be funny, because life with an autistic kid is funny. So, who should read it? Basically, if there is someone with autism in your life – or even if there is not but you have a neurotypical kid you would like to throttle – it might be right for you.

7. D&A: In one chapter, you write candidly about guilt and blame. Was that difficult?

JN: Like every mother, when you have a child with an issue, you think, “what did I do”? Autism is such a mystery and I believe it’s a cocktail of genetics plus environment, but I do not beat myself up about it anymore. The answer is probably a combination of things—I had a child with a man much older than me, I had IVF, I was older, I had a terrible pregnancy—I was in a state of dread, and stress hormones like cortisol may play a role. Statistically I was the poster child for someone to have an autistic child. There is a lot of blame in this world that we put on ourselves. Sometimes it is legitimate, but in many other instances you could take the right vitamins and stop eating sushi and do aromatherapy every day and “ohm” until you are blue and still have a child with autism.

8. D&A: Do you have any advice for writers who aspire to have a career like yours?

JN: Yes. If you are freelancing, when you start out have low standards. Having no standards is even better. Write for anyone who will take you, and do that for a year. Then stop, and start aiming higher. Think of that year as the writing equivalent of the starter marriage: you will not be in it forever, but you are learning something. Also, if you like to write personal essays, your first approach is to write them as if no one will ever read what you are doing. Then, when you are done, say, “Well that was satisfying. Now will anyone else in the world give a (expletive) about this besides me?” If the answer is yes, send it out. If the answer is no – and all of us have those essays where the answer is no – keep it on your computer and hope that your future children never learn your password.

9. D&A: Gus and Henry, are now late into their teens. Is the twin bond still prevalent and what are they doing now?

JN: Henry has gone all in for Scotland; he is at university there, and just finished campaigning for a Unionist. He drunk-dialed in the middle of the night to tell me when his fellow won, and spent a half-hour explaining the evils of the Scottish Nationals vs. the good common sense of the unionists – a conversation that I’m sure he forgot by the next morning. Gus is still in school, but mostly during quarantine for Covid-19 he spent his days on Zoom calls that are organizing for various progressive causes, and he is pleased to be arguing with me about who should be New York City’s next mayor. It’s an interesting evolution in socialization. He does not use Siri as a pal anymore; he uses it the way we all do, for information. But his definition of friendship is a little more expansive than the rest of us. He has real-life friends, but he also thinks of Chuck Schumer and Joe Biden as his friends, in a way, because he gets thank you emails from them. I can think of worse things than this encouragement of political engagement!

10. D&A: What is one piece of advice you have for parents/guardians who have a child with autism?

JN: Radical acceptance. I think it’s actually good advice for all parents. Love the child you have and meet them where they are. And see their quirks for the fun and humor they bring to your life — because if they’re not harming themselves or anyone else, they are fun. Gus has always liked to have conversations with my feet. Now, I’m not going to have him talking to my feet when friends are around. But if he does something I really want him to do – his daily piano practice, for example – well, dammit, he can talk to my feet and my feet will talk back.

How One Boy With Autism Became BFF With Apple’s Siri – The New York Times (nytimes.com)

“Your child has the physical skills of a newborn,” is never something a parent of a 1 year old wants to hear.

Given our daughter’s many diagnoses, it perhaps would have been justifiable to give up and accept what many of the experts were describing as a life of limits. A life of can’t. However, in our case, with a lot of work and determination from many people, 12 years later, our daughter has become a rhythmic gymnast and a dancer. Erin’s current reality would not be possible if we had accepted her original prognosis.

Erin was born 8 weeks early with Down syndrome and just about every physical complication that could come with it. She had 3 major surgeries in her first 6 months and spent almost half of her first year in the hospital. When she was cleared for Early Intervention at 6 months, we began working with Developmental, Speech, Occupational, Physical, Music, and Swim therapists along with a nutritionist. She also took a weekly inclusive music class. We immersed ourselves in Signing Time videos, and Erin had an age appropriate vocabulary—with sign language being her first language. She used an NG tube for the first 11 months of her life. She and her team worked hard. Her siblings were also expert play therapists and creatively included Erin in every activity they could. Shortly before her third birthday, Erin transitioned to the school based Early Childhood program, and a hospital based Physical Therapy program, using a walker and crawling. She was able to first walk in swim therapy with the buoyancy support. One week after having ear tube surgery and with a candy reward system her sister devised, Erin walked for the first time on Halloween, just before her third birthday.

Sometimes the most amazing things become life changing breakthroughs. Looking back, we had two of those breakthroughs. Erin’s Aunt and Uncle sent her a rhythmic ribbon for Christmas. Nothing fancy, but Erin would play with the ribbon for hours. She would put the song, “Let it Go,” on repeat and dance and dance. I began searching for opportunities to develop this interest and found that Special Olympics offered rhythmic gymnastics. With the help of her PT at the time and her sister the dancer, Erin began applying all she learned into an athletic framework. Having mastered crossing the midline at a younger age, we hadn’t worked on it much. That is until her ribbon routine called for a figure 8. What her sister and I thought would be easy became a complex motor planning exercise months in the making. The advantage of the Rhythmic Gymnastics framework was that, while therapy isolated and made it difficult to attend extracurricular activities, a recreational based model provided socialization, confidence building, and added a skill development. She moved from being a patient to a performer. She then became involved with Unified Sports, which is an inclusive model, gaining peer modeling and socialization. This transition to a recreational based program gave her a chance to perform with her friends at a Special Olympics Gala. Her years of PT work allowed her to overcome her physical challenges and use her grace and strength to show others the possibilities.

The second breakthrough for us came when a service dog named Cassie joined our family. At the time, Erin was using her hard-earned physical therapy work to elope. Cassie would alert us if Erin was headed out the door. Erin really did not appreciate the sensory overload of having a dog bark at her and stopped eloping within 3 or 4 months. We also trained Cassie to track Erin. This gave us great comfort and playing hide and seek with a dog was a wonderful activity for Erin and her friends. Erin also helped train Cassie, which provided fabulous leadership and speech opportunities. Cassie was a great reinforcer of ending consonants, as in “sit,” “down,” and “shake.” Cassie was great support for 9 years, taking us for walks, playing ball, and being a loyal friend. She also taught us about saying goodbye when she passed over the rainbow bridge, Erin insisting she be by her friend’s side, as Cassie had been by Erin’s side all those years.

Our other animal partners have been the horses at the Hanson Center Therapeutic Riding Program. Horse back riding is not only good for core strengthening, but it provides a valuable connection to a beautiful creature.

To continue our transition from medical based PT to life-long recreational based exercise, we have begun working with Angela Rodriguez, owner of Kines Training and Coaching. As Angela says, “Exercise gives you confidence, makes you strong mentally and physically, makes you self-sufficient, and helps you handle every day life.” These are things I strive for myself and wish for all of my children. They are also key for achieving joy regardless of ability. Erin is currently working on yoga with Angela, improving balance and strength. The two and Erin’s sister are also working on breathing to help with focus. “Breathing brings back the focus and supports regrouping and changing your reaction,” Angela said.

Life-long fitness is much more effective when people find and do what they love. For children with special needs, doing this may require a medically-based therapy program to develop skills and strength needed to move into recreational-based programs. Therapists working with Special Olympics and other programs can help their patients continue to receive benefits long after treatment has finished.

The Beginning

Annabelle was born at 10:30 pm on November 1st, 2016 at 34 weeks gestation. She weighed only 4lb 4oz. Annabelle was brought into the world early by an emergency caesarean section as a result of reduced fetal movements which arose due to pre-eclampsia. Pre-eclampsia is a condition which affects a small proportion of pregnant women and while the cause of it is unknown it is thought to occur when there is a problem with the placenta.

After being in and out of hospital for scans, monitoring and numerous checks for 2 weeks prior, it was decided that our little girl wasn’t happy where she was and needed to be delivered.

Annabelle was delivered breech and needed resuscitating. It took several minutes to get her to take her first breath. She was transferred to the Special Care Baby Unit with the support of oxygen. A cranial ultrasound revealed a grade 1 brain bleed which resolved prior to her discharge and she had phototherapy on day 2 due to being jaundiced. After a couple of days in special care Annabelle started to thrive and the staff were amazed at how well she was doing. Everything seemed great and Annabelle was discharged on the eighth day of her life.

The next few months everything was going well. Annabelle did battle with a cow’s milk protein allergy which caused her pain and discomfort and she also suffered from reflux causing her to vomit several times a day (which we now know was a symptom of her Cerebral Palsy and the lack of tone in her stomach muscles) but once we knew how to manage this and removed dairy from her diet, things became easier.

As first time parents you watch everything your child does, encourage them to hit their milestones and brag to your family and friends about how well they are doing. Concerns about Annabelle’s development began, however, when she was still not able to sit without assistance by 9 months old. She was also doing various things that just seemed ‘different’: for example she had strange uncontrollable movements, she favored her right arm over the left and her hands were regularly clenched in fists. We put it down to Annabelle’s prematurity but we were secretly concerned and spent hours upon hours scouring the internet to research possible causes of the signs she was exhibiting. While Cerebral Palsy was at the front of our minds, it was something that was not spoken of.

Cerebral Palsy and the Diagnosis

Cerebral Palsy is the umbrella term for lifelong conditions which affect movement caused by a brain injury or abnormal brain development, which occurs around the time of birth. Annabelle was formally diagnosed with Cerebral Palsy just after her first birthday. While the diagnosis was not a shock, it was extremely hard for us to absorb. For the past four months, we have spent time coming to terms with the diagnosis and learning about the journey which lies ahead of us.

Annabelle is still not able to sit without assistance, she is not able to crawl, she is not able to stand and she is not able to walk. All four of Annabelle’s limbs are affected as well as her trunk.

Explaining Annabelle’s ‘differences’ to others is hard as our emotions often take over, but we are hoping that over time it will become easier. We want to share Annabelle’s journey to help raise awareness of the daily challenges that children with Cerebral Palsy face.

Living with Cerebral Palsy

Over the last four months we have had numerous hospital appointments, brain scans (EEG and MRI) and therapy sessions, all of which have helped to put the pieces of Annabelle’s puzzle together. This support has made her stronger, but only time will tell how ‘different’ she will be. No one child with Cerebral Palsy is affected in the same way and consequently, it is impossible to predict the future.

Annabelle attends physiotherapy, speech and language therapy through the NHS who have also provided her with her Jenx Corner Seat and have ordered her a standing frame to enable her to have some mobility as she grows. Annabelle has recently benefitted from the work of two charities, Dame Vera Lynn Children’s Charity and Whoopsadaisy, both of which specialize in helping children with Cerebral Palsy and other motor disorders. They provide Annabelle with Conductive Education and also Music Therapy. Every morning Annabelle is required to do various stretches to help loosen her muscles and on a daily basis Annabelle does therapy at home which we incorporate into play to make it more manageable and fun for her.

We are adapting to deal with the ‘different’ life Annabelle is going to live as a result of Cerebral Palsy. We know that as a family, with unconditional love for each other, we will help Annabelle to reach her full potential.

She may be ‘Different’ but she will be ‘Able’!

You can learn more about Annabelle’s story on her website and on social media, Instagram and Facebook.

Going to the prom is often a rite of passage for teenagers, and yet many young people with differences don’t get to go to prom because their schools or support programs don’t sponsor prom events. That’s where the Tim Tebow Foundation comes in. Every year the Foundation hosts “Night to Shine” events all over the country and world, where people over the age of 14 with differences can come to get their hair and make up done, get their shoes shined, ride in a limo, dance the night away, and be crowned King or Queen of the Prom. It’s a very special program.

Night to Shine has drawn as many as 100,000 people in a single year, thanks to guests with disabilities and an army of volunteers. Looking to find an event near you? Check out the event locations here.

Chris Gorham is a dad, an American actor, and an autism awareness advocate. He is well known for his role of Auggie Anderson on the USA Network hit series, “Covert Affairs.” Chris met his wife, Anel Lopez Gorham, at the University of California, Los Angeles in a vaudeville class; they later appeared together on the high-school drama series, “Popular.”

In 2001, Chris and Anel, welcomed their eldest son, Lucas. At nine years old, Lucas was diagnosed with Asperger’s syndrome, a form of autism spectrum disorder (ASD). (Asperger’s syndrome is a neurodevelopmental disorder characterized by significant difficulties in social interaction and nonverbal communication, along with restricted and repetitive patterns of behavior and interests.) The Gorhams knew that their son Lucas had a difference before his diagnosis. In the second grade, they had noticed that Lucas was having trouble with understanding the subtleties of socializing.

“It’s upsetting to hear that something is wrong with your child. At the same time, it’s a relief to know what’s wrong with your child because if you know what’s wrong then you can start to take steps to help them,” Chris states. With the knowledge about the diagnosis, a strong focus on family, and enrollment in a school that was geared toward kids on the autism spectrum, Lucas thrived.

Interviewed by our Different & Able President and Founder, Alexandra Nicklas, Chris talks about family, his career as an actor, and what it is like to portray a character with a disability. He also discusses his personal experience learning about his son’s diagnosis. Chris says beautifully, “I don’t think of him as my son with Asperger’s. I think of him as my son. He’s not wrong. He’s not broken. He is who he is. We, as his parents, are going to do our best – as we do with all our kids – to give him the best shot at having the best life he can.”

Hollywood actor Bruce Willis has captivated audiences worldwide. He is known for his roles in the comedy drama series, Moonlighting and in films including Die Hard and Pulp Fiction. Bruce first married Demi Moore in 1987 and later Emma Heming in 2009. He has five daughters between both of them. In recent years, Bruce has been absent from the spotlight. In 2022, he was diagnosed with aphasia which progressed to Frontotemporal Dementia. Frontotemporal Dementia (FTD) is a neurodegenerative disease, affecting the frontal and temporal lobes of the brain. These areas are responsible for personality, behavior and language. Often FTD is misdiagnosed. FTD onset usually occurs between 40 and 65 years old. ABC aired a special, Emma and Bruce Willis: The Unexpected Journey where Emma shares the heartbreaking story of Bruce’s diagnosis, their new reality and what she and their family have faced during the caregiving process. She also wrote a memoir, The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path.

Bruce’s first symptoms were difficulties with language. The language difficulties were thought to be reflective of his childhood stutter. But soon, alarming warning signs were present. Bruce’s warm personality changed, he lost interest in things he once loved and he began skipping out on family outings. Emma described the changes: “For someone who is very talkative and very engaged, he was just a little more quiet. When the family would get together, he would kind of just melt a little bit.” He was also unable to recognize emergency situations such as if the smoke detector went off. Emma now had to worry about not only his, but their children’s safety.

With Bruce’s diagnosis, life changed. “The future we imagined simply vanished, and I was left trying to hold my family together, raise our two young daughters, and care for the man I love while navigating a disease I barely understood.” Emma began learning the ropes. She began implementing Bruce’s needs. Recently, she made the difficult decision to move Bruce to a separate home for safety and treatment. She knew Bruce would not want his daughters to live in a home that was tailored to his needs. He would want them to live as normal as possible. Despite this decision, the family is still very much involved and they spend a lot of time in the house Bruce lives in.

Emma is dedicated to raising awareness on this debilitating disease. The information and resources offered when Bruce was diagnosed were slim. She advocates for caregiver support and promoting research. She has spoken at the Association for Frontotemporal Degeneration about how individuals can make a difference to help develop treatment and find a cure for FTD. In May 2025, Emma received the Caregiving Award for her “outstanding work in advocating for unpaid family caregivers” at Maria Shriver’s Women’s Alzheimer’s Movement luncheon.

During a time of illness, love and family support is crucial. The love and family support from Bruce’s family shines through in his story. Emma is a dedicated wife and mother. She is dedicated to getting the best care and treatment while also raising awareness on this disease. We are grateful that Emma is shining a light on FTD, the struggles of caregivers and the importance of family and friends when facing a life changing diagnosis.

References

1. Fox News: Bruce Willis showed alarming warning signs before dementia diagnosis, wife says
2. The AFTD: Emma Heming Willis honored with caregiving award

Art is a way to express feelings. While drawing I am happy, often angry, sometimes endlessly sad or even destroyed. Sometimes I feel all of these emotions all at the same time.

My paintings are an entrance. I want the viewer to become a part of the world of a person whose life is influenced by autism.

That brings me straight to a word “autism.” If you look at my pictures, then you may make assumption that I am autistic myself. In fact, it is my son who has this particularity. When he was only a few months old, I realized from his rhythmic movements and twitching that something was different about him. I told my husband about it and we watched him for a while. The symptoms were worse on some days and better on others. Over time, however, unbridled tantrums, screaming attacks, and self-injuring behaviors overwhelmed us. Sometimes our son hit his head so hard against the floors and walls that he was green and blue. At night he had screaming attacks and roared so loudly that our neighbors complained to us and knocked against the walls.

At first I was angry and sad, because I knew there was no cure. I was desperate and completely at the end of my rope. Then I took notes and began to paint and sculpt together with my son. We changed our life in small steps and art as well as reading became an important part of this change. My husband and I practiced accepting him as he is, with all his edges. Our painting together spurred me to cope with all my emotions. My son can not bear it when I cry, scream or laugh loudly. So art is the best way to explore all the feelings I have.

An “autist” does not differ externally from a “normal” person. He stands out only because of his behavior. In the past, I was easily annoyed by the looks of other parents, when they observed my son’s symptomatic behavior. Today I am more relaxed. This is exactly what I try to show in my pictures. I don’t shy away from showing the pain and the anger that I sometimes feel when my child is violently spinning and can not be calmed down. I practice with him every day and we do rituals that give him security. Sometimes I struggle to cope with this pressure. My paintings help me. I publish my works on the internet to reach people all over the world who may be affected by similar issues or in a similar situation. My paintings are also for those who have never before had experience with an autistic person. I’m convinced that you will find yourself in my art.

Medical research learns more about autism every day. Therapies are an important step, but above all I’ve found that the cohesion of the family is what helps the most. Without my husband, I might have failed in the experience of raising a child with autism. Without my painting, I would have died emotionally.

I think it’s important to find a balance. Many parents of autistic children forget about themselves and spend all their time worrying about their children. For them I hope that, despite all the challenges, they can remember to take care of themselves too. Most of all, I hope that others remember that they are not alone.

You can contact or follow Desi’s work at @eerised_art.