How do you know he loves you? Does he say those three little words?
He doesn’t use his words, but he tells me he loves me, a hundred times a day, in a hundred different ways. He tells me with his eyes, when he wakes up and I’m the first person he sees. He smiles the faintest of smiles, with his puffy morning-eyed slumber and I know I’m the luckiest person in the world. I sneak in a snuggle and breathe in the smell of life from the top of his head, and I wish I could cancel the world and stay in bed with him all day.
He pulls me over to the swing, and gestures to help me place him on the seat. I push and push and push, until my arms want to fall off, his entire body at peace. I push him on the swing 100 times in a row. And then one more push after I swore I was done. His happiness, his calm, his squeals of delight- is nothing but a big huge, I love you.
He tells me I love you with his unstoppable strength, when he doesn’t want to work and he is so sick of another session or appointment or therapy. He aches to play outside and be alone. He screams and cries and looks to me to rescue him. I don’t, I tell him, you can do this and I am so proud of you, even though sometimes I really just want to grab him and run away. He tells me that he loves me when he calms down, stops crying and starts to do what is asked of him. His face says, I don’t want to do this today, but I trust that you know what’s right for me momma.
When he falls down and gets hurt, he rushes right over to me, and it makes me feel like I just won a prize. He cries while I hold him, and whisper- it will be okay. He lets me hold him tight while we rock back and forth until his shuddering stops. His arms around my neck, his ability to find his calm in me, tell me without a doubt that he loves me with all his heart.
He tells me that he loves me with the relief in his eyes, when I am able to figure out exactly what he is looking for, or what he wants, or needs- even if he is not able to say the words. I know when he is hungry or sad or frustrated. I know when he is hot or cold or excited, all by just a look. I know he is anxious when he can’t stop humming, ticking and moving and he is covering his ears. I know he is happy when he jumps up and down and flaps his hands and makes high-pitched noises. I’ve intently studied all of his non-verbal cues over the years and sometimes I think I know him better than I would if he could speak.
He tells me that he loves me, when out of the blue, for the first time in months he tenderly grabs either side of my face with his sweet little hands, he places his warm soft forehead against mine and looks so deeply into my eyes that it steals my breath. I know you are in there, baby, I whisper with tears threatening to jump out. I will never give up on you. I love you too.
So no, he doesn’t speak the three little words, “I love you”, but he tells me all the time. He loves me, and I’ve never been so sure of anything in my life.
It seems strange writing about Autism Spectrum Disorder because I often avoid engaging in conversations regarding the topic.
I do not hesitate to discuss any topic that is near and dear to me, except autism.
Why would this be for an outspoken woman who is passionate about issues that affect children? I do not discuss the topic because it causes my 19-year-old son great pain and discomfort when I do, because he does not want anyone to know he has a diagnosis of autism.
My firstborn son was diagnosed with Autism Spectrum Disorder at 16 years old. He was born 5½ weeks early, but he was always well above his developmental age cognitively. When he was 2 years old, he was reciting states and capitals and doing addition problems.
Our pediatrician in New York told us that his head was unusually large, but because he was so precocious, there was nothing to be concerned with.
We love autistic children – until they grow up
When he was about 3 years old, I had to take him to the doctor because he was sick with a respiratory infection. Unfortunately, his normal pediatrician since birth was not in the office and we were set up to see another doctor.
I took my son in for a common cold and left with a diagnosis of possible hydrocephalus with an MRI scheduled for the next day.
At almost 3, my son still had a soft spot the size of a quarter; however, there was never a concern because he was always considered “precocious” by his regular pediatrician.
Signs of autism begin to emerge
I did not sleep or take my eyes off of my son until the results of the MRI came back.
The MRI found no abnormalities. My husband and I were angry at the doctor for scaring our family, and yet we were relieved that our baby was healthy.
As my son progressed intellectually, he also developed quirky habits and characteristics that were noted by many, including his regular pediatrician.
We could not dress him in anything with tags because he could not function with the feeling of the tags rubbing against his skin.
He was obsessed with trains, especially Thomas the Tank Engine. As a 3-year-old, he memorized every train name, and he could not go to sleep unless they were all lined up a specific way on his train table.
By the age of 5, he did not like anyone to really touch him except for me and would do whatever he could to politely move away from family members who would try to caress or hug him.
Breaking ground: Work begins on First Place complex in Phoenix for adults with autism
He wasn’t the type of child who would throw a tantrum, you could just look at him and see the pain in his eyes and his discomfort was palpable.
We were lucky he was such an angel, knowing what we know now about autism; however, it was because he was a well-behaved and brilliant little boy that he went without a proper diagnosis for so long.
Year after year, we would have his pediatricians tell us that he the characteristics of Asperger syndrome.
We were also told that until it had an impact on his functioning that he would not likely be diagnosed.
Of course, the first thing I did was read every research article, every book and anything I could get my hands on, trying to figure out what I could have done differently — and even more importantly, how could I work with him to help him have the most normal life he could have.
I knew he would be fine intellectually, but the older he got, the more I could see how he would be labeled if we did not intervene to help him appear “normal” socially.
Searching for a reason
In my years of looking for a solution and “why” my son was the way he was, I found that many parents have that same need.
As humans, we need a reason, or an answer, and something to blame when things do not go the way we feel they should.
Wings for Autism at Sky Harbor Airport gives practice to would-be fliers from Phoenix area
I have read articles and blogs and watched talk-show interviews of people blaming vaccines and other environmental factors.
However, I could never find any conclusive empirical data or studies to support these claims.
What I did find in my research was a significant increase in Autism Spectrum Disorder and a continuous decrease in other mental disorders such as mild mental retardation or intellectual disabilities.
Until 1973 when the DSM changed the IQ cut-off point for intellectual disability, the DSM IQ cut-off point was 85.
The decrease in the cut-off point changed the diagnosis for a very large number of individuals.
The cut-off point changed because it was found that people with low IQ, but high adaptive functioning, could hold jobs and live a regular and successful life if they were able to go undetected during their school years.
Compulsory education and the change in academic expectations for all students had a significant impact on diagnosing intellectual disabilities, because even those with lower IQs would no longer be diagnosed as intellectually disabled.
If a person is no longer able to be considered intellectually disabled, but still cannot function socially because their adaptive functioning is low, then the next step is to seek another diagnosis to explain what would once have been considered “idiots, morons, and feeble-minded.”
This is where I believe caused the significant increase in the number of children diagnosed with Autism Spectrum Disorder, a disorder that went “officially” undiagnosed in my son until he was 16.
That year, he had an emotional breakdown because his adaptive functioning was a struggle every day of his life as he got older, and it was more apparent that he was “quirky” compared with other kids his age.
My son had to be placed under observation because he spoke of feeling hopeless and useless because he did not fit in. He looked like a jock but his mind was always thinking about chemistry and physics.
My son was ridiculed, almost daily, by people calling him “retard,” yet he was in Calculus III as a senior at the age of 17.
We worked with multiple doctors, including a psychologist who specialized in Autism Spectrum Disorder, when a psychiatrist diagnosed him as having Autism Spectrum Disorder, because his lack of adaptive functioning was impeding his ability to connect and relate to his peers and triggered depression and anxiety.
A diagnosis and a new perspective
As a parent, I wanted an answer for why my child had to deal with the struggles of autism. What I do know from all of my research is that autism can be linked to genetics.
Of course, no parent wants to think that their genes may have contributed a child having challenges in life. But placing blame on other factors that have no proven direct link, such as vaccines or other environmental factors, can cause harm to many children and adults.
In hindsight, the fear of a life-threatening diagnosis, such as hydrocephalus, may have been what helped to keep our perspective positive before and after the diagnosis of autism.
In the whole scheme of life, we are fortunate that today our son, who is 19 and in his second year of chemical engineering, is able to have a more specific diagnosis of Autism Spectrum Disorder rather than be labeled intellectually disabled because of his social difficulties and quirkiness.
The estrangement of Jewish youth from the Jewish community is an issue of concern for all of us. While we differ in how that sense of belonging should be expressed, we all want our children to self-identify as members of that unique society of mutual responsibility and reliance that is the Jewish people.
For some of our children, the weakening of the Jewish bond is a consequence of our integration into a modern, open, pluralistic society. While this is true to some extent, it is far from the whole story. As much as there is “pull” from society, there is “push” as well.
Our communities, schools, synagogues, and programs are — effectively — designed to push a significant portion of our children away from the Jewish community. In our self-ascribed ethos as a particular kind of “People of the Book,” we have written out of our story young people who don’t fit the mold. In my thirty years of experience as a camp director, school principal, and practicing clinical psychologist in both Israel and the United States, I have seen the effects of this “write out” on vulnerable children from all over the globe.
Who does a narrow definition of success exclude?
In our laser focus on professional success and educational merit, we have driven a wedge between Jewish identity and the self-image of thousands of Jewish youngsters. For many of our youngsters, and young people, their natural aptitudes and strengths deviate from communal expectations.
Not every child will excel in verbal-linguistic or mathematical intelligence. We have excluded from the category of authentic “Jewishness” entire classes of lower-earning people and youngsters whose natural skills and interests diverge from Jewish convention. Our institutions have forced self-alienation on masses of young people who would otherwise be proud Jews. Families have splintered because of parental unwillingness to accept a child’s otherness.
Isn’t the Jewish story elitist from the very beginning?
The biblical story of Isaac’s children describes Jacob as the “tent-dweller” and his twin brother Esau as a hunter, a man of the field. Jacob wins out in the biblical story, becoming the successor to Abraham and Isaac. Doesn’t Esau’s loss validate that the Jewish story picks the studious and reject the rambunctious, the hunters, the impulsive offspring who will not excel in the study hall?
The biblical story of Esau selling his birthright to Jacob describes thoughtless and impulsive behavior in almost textbook fashion: “And he ate, drank, arose, walked and disdained the birthright.” These five action verbs provide beautiful literary expression of the internal impulses that drove Esau right out of the Jewish story.
There could have been an alternative
The bible provides a alternative to the Esau story – King David. Like Esau, David was a redhead. And, by all accounts, he was blessed with lots of energy. We know him as a shepherd, warrior, musician, poet, spiritual giant, astute politician, father, husband, and good friend. We know him as a man where passion sometimes precluded reason. Yet, his energy was directed in positive channels. Because of those energies, he become king David!
Had Esau found constructive outlets, would the biblical story have unfolded differently?
At Matara, a residential treatment program in Israel, we refer to the failure to accommodate children and young people who don’t fit the mold as “The Esau Complex.” The young men and women who thrive in our program were often branded with modern labels – Autism, ADHD or Oppositional Defiant Disorder (ODD). We should be finding ways to nurture potential among the children who fall outside the comfort zone of our society. Instead, we have constructed a system that doesn’t understand them, that regularly debases their skills, and that drives them apart from family and community.
Rethinking and tapping the energy
Has it been your experience that as autism, ADHD and ODD diagnoses multiply or that schools make “accommodations” for “handicapped” students? Is it the case that school, and the wider society, view our out-of-the-mold kids as somehow second rate or disabled? Do these young women and men find that their strengths are debased?
The results for Jewish families, and for the Jewish community, are devastating. Experiencing failure and frustration year after year is a recipe for disaster. The results often include estrangement from family, alienation from community, and even a drift to substance abuse or other risky behaviors powered by low self-esteem.
It can be different. Our families, communities, and schools should be providing positive reinforcement for the multiple types of intelligence that our young people have. Non-verbal, non-mathematical intelligences need to be recognized, cultivated, and regarded. In Israel, a wide range of young people find opportunities to build on their natural talents. We are justly proud of our scholars and scientists, but the nature of society means that merchants, carpenters, construction workers, soldiers, bus drivers, bank clerks, plumbers, butchers, and bakers live side by side with doctors and lawyers.
At Matara, we are committed to finding avenues for young men and women to build self-esteem, self-worth, and competence. In our experience, the results are evident in improved family relations, greater identification and participation in the community, measurable improvements in functioning, and reduced risk of substance abuse.
If you are a community leader, educational professional, or a concerned parent, reach out to Matara for guidance. Whether you are facing failure to launch, have a child that just doesn’t fit in any school, or just want direction for how to meet the challenges, we are here to help.
It happens to most of us as we parent kids with disabilities, we hear statements like, “You are amazing, I could never do it.” “It must be so hard.”
Yes, it’s true, sometimes parenting kids with disabilities can be hard. We do have extra challenges that most parents of typical children don’t have to deal with, and our lives might look a little different than yours. But I hope you recognize that our lives look similar to yours too.
Can I be honest with you? Some of these comments – after a while – make me feel as if you think my child is not as lovable, and only certain people would be able to love my child or parent her. When you praise me for parenting my child, it says to me you feel fortunate she’s not your child because that would be hard and terrible and tragic. I know that’s not what you’re trying to communicate, I know that, but sometimes it does.
If I saw a friend with her typical child and I pointed at her kid and said, “I could never do it.” I think we would all agree it would be rude. That statement would say a lot about what I thought about her child, most likely not positive because I just said I could never do it. “What do you mean?” She’d probably ask offended. “I mean, it must be so hard to parent YOUR child!” Maybe right then she would have day dreams of punching me in the face. But I would not be surprised if she picked up her kid and walked away from me, offended, and reassuring her child he is loved, and wonderful, and she is lucky to be his mom.
It’s no different when I hear that. That’s how it makes me feel.
You see, the world tells us that disability is bad. When my youngest daughter was born with Down syndrome my midwife cried and the pediatrician shook his head and said he was sorry for giving us such bad news.
When we adopted our daughter who has cerebral palsy, a lady asked my husband, “Couldn’t you find a healthy one?”
Look back in history, we have not treated persons with disabilities as people. We have not treated them as equals. We still fight those messages and ideas today. Ask an adult with a disability how most of our society treats them, and think about how you would feel if you were judged based on your limitations. As the mother of two kids with disabilities, this pains me, because most people don’t know what I know, they don’t see what I see. They’re not part of our Friday night movie nights. Or our family vacations. They don’t see the pure joy of watching them dance and laugh and be kids. Disability is not a tragedy, what is tragic is how the world views disability.
I love my kids. And I’m not extraordinary for loving them, I’m their mom! How could I possibly not love them? How could I possibly not be their advocate, their teacher, their greatest supporter? You don’t think you could do it? Yes, yes you could do it! You would do it because you love your kids. And I am who you would be if your child had a disability. Having kids with disabilities is not reserved for the special few. It happens to me, to you, to my neighbor, and to the millionaire. Disability is part of life.
Comments that praise me for loving my child suggest that while everyone else got high speed wireless internet, I’m stuck with dial up. I mean that stinks, dial up of all things! “So sad you can’t enjoy the internet or participate in social media like the rest of us, I could never do it, I could never do dial up. I know what high speed wireless internet is like, it must be so hard to wait for the dial while everyone else is already on Facebook.”
My child is not the least desirable option, she’s not dial up, she’s a person. She has a unique personality, gifts, talents, ideas, likes and dislikes, a temper, a sense of humor, a big laugh, a tendency to melt my heart, and her arms wrap tight around my neck letting me know she loves me too.
Please, don’t hear me say I don’t want your support or encouragement, because I do. If you think I’m doing a good job, just say that, “Hey, you’re doing a great job.” If you think I look frazzled and you see my child is having some difficulties, I might be having a hard day, and if you really don’t know how I do it, chances are I might not know how to make it through the day either, so what about, “How are you doing?” Open the conversation, ask questions, let me know you care.
But please remember, I’m not amazing for loving my child, neither are you for loving yours. It’s what we do, we love our kids.
Look at your child, because you know no matter what happens, you will never stop loving your kids and you would do anything for them. If there was an accident and your child ended up disabled, you would care for them and love them just as fiercely as you do now.
I don’t feel I got the wrong end of the deal, I’m not stuck with dial up. I feel like the luckiest mom to call these kids my own. Please don’t praise me for loving my kids, they are lovable, they are mine.
New York Attorney General Eric Schneiderman brought about a settlement with Cigna that imposes a penalty of $50,000 and stipulates the company must not only revise its policies, it must pay autism claims that it previously had rejected, New York Business Journal reported.
Cigna must change its written policy banning coverage of neuropsychological testing for psychiatric conditions and autism spectrum disorder.
Further, the company has agreed to comply with Timothy’s Law, which requires group health plans in New York to provide “broad-based coverage for the diagnosis and treatment of mental, nervous or emotional disorders or ailments” that matches or surpasses coverage for other health conditions.
Coverage for psychiatric testing and care has long lagged behind coverage for other medical conditions. In 2008, the Mental Health Parity and Addition Equity Act brought some relief to consumers by preventing large health plans for structuring their coverage for mental health conditions much differently than their coverage of other medical conditions. Under the Affordable Care Act, the requirements were extended to individual plans.
“Parity is the new normal,” Dr. Colleen Barry, professor and associate chair for research and practice in the department of health policy and management at the Johns Hopkins Bloomberg School of Public Health, told Healthcare Dive last August. “We’ve passed the phase where transitional violations are OK and need to get to a point where the requirements of parity are being strictly enforced.”
Overall, the Substance Abuse and Mental Health Services Administration (SAMHSA) estimated 43.6 million American adults (about 18.1% of the population) have experienced mental health issues.
But mental health services can be costly. Autism in particular has garnered much public attention as the incidence of the condition rises — and those costs are going to get much worse. According to conservative estimates by health economists at the University of California Davis in 2015, direct medical, direct non-medical and productivity costs related to autism spectrum disorder will reach $461 billion annually by 2025. Should the prevalence of the disease continue to rise, costs will exceed those for diabetes by 2025.
Compliance with Timothy’s Law will put additional strain on Cigna, which suffered financial losses in the past year.
Thanks to early intervention and one determined mom, this young boy with autism is now a 24-year-old who surfs, cooks, paints and works at a resort.
It was the early 1990s, and architect-turned-flight attendant Rachel Fernandez was preparing to move to Switzerland with her husband, banker Keith Harrison, and their two children at the time, Alexander and Julyan. Before making the move, she decided to visit her parents in the Philippines. And it was here when Rachel came upon a piece in a popular daily about the 20 signs that a child is autistic. Rachel found herself ticking off 18 that applied to her second son, Julyan.
“Actually, all 20 applied to him,” Rachel says today on hindsight. “But I was in denial at that time.”Several friends and relatives already observed that there was something peculiar about Julyan. At 2 years old, he would not speak nor socialize. “He knew about 10 words when he was 1,” Rachel recalls, “and he somehow lost them.” When she consulted doctors, “They assured me that his development was just delayed.”
At the time, there was very little information easily available about autism. So when Rachel saw a seminar on the topic sponsored by an Australian society in Manila, she quickly signed up to attend. It was here where her worst fears were confirmed, and she couldn’t stop crying. “I went home and it dawned on me that my child might be autistic. The symptoms were all there.”
After her family settled in Switzerland, Rachel read every book she could get her hands on to learn about her son’s condition. “I was frantic. I was going to do everything in my power, everything I could do [for Julyan].”
In her research, she discovered and got in touch with Dr. Svein Eikeseth, a Norwegian doctor at the University of California in Los Angeles (UCLA), who was using a form of therapy called applied behavior analysis (ABA).
Today, ABA is known as the longest-standing form of therapy for children with autism. The Atlantic describes the therapy this way: “Certified therapists deliver or oversee the regimen, organized around the child’s individual needs — developing social skills, for instance, and learning to write a name or use the bathroom. The approach breaks desirable behaviors down into steps and rewards the child for completing each step along the way.”
Despite the distance, Rachel somehow managed to convince Dr. Eikeseth and UCLA to help her set up an ABA home program for Julyan, who was 3 in 1995 when he started the therapy. When Keith’s job took the family to Singapore, a persistent Rachel tapped the psychology students from the National University of Singapore to help her with what she and Dr. Eikeseth started.
Julyan had six hours of one-on-one therapy every day, which dropped to three hours by the time he entered school until he was 12 years old. But just a few weeks into the program, Rachel was already seeing progress. “He was able to say, ‘Mama,’ ‘Papa,’ ‘apple.’ It all depends on imitation, starting with actions then words. Napaiyak ako when I realized he could do those things.”
Today, Julyan is 24 years old, and he is working as one of the housekeepers of a Zambales beach resort, which sits on the land Rachel bought with her savings as a flight attendant. Called Zambawood, it is a haven for Rachel’s son who functions well in nature and craves for structure and schedule. At Zambawood and at the adjacent organic farm, Julyan’s Pine Beach Farm, where he is a farm assistant, Julyan thrived; in fact, he surfs and goes kayaking, paints, cooks, and has even built a bamboo bike! (His mother clarifies that Julyan is assisted by his best buddy, Jophel, who is the same age as her son.)
Rachel is thankful every day that she had the opportunity to provide for her son’s special needs. But, at the same time, she stresses how early detection and intervention was vital in her experience especially since autism covers a wide range of social, communication, and behavioral disorders. “Autism is for life, but you can help lessen the behavioral problems. Your child can have a purposeful life,” Rachel says, adding, “A lot of experts have solutions. It’s up to the parents to decide which therapy is good for the child and spot the skills they can be good at.”
In the future, Rachel hopes to build a community in Zambawood for adults with autism, supported by experts who can help them become productive. Julyan, of course, is ever present in her mind. “One day, we will all be gone. Now, I know, he will not be a burden to his two brothers (Alexander and the youngest Jonathan). There are many opportunities for Julyan to work with the community in Zambales, to have his own life.”
To parents with children with special needs, Rachel recommends that they need to find a way to learn how to relax. “I used to cry when I get frustrated because he couldn’t grasp simple tasks we taught him — I wanted him to catch up with kids his age. It’s easier for me to say that now,” Rachel smiles. “I have accepted his limitations, which are beyond our control.
“Take care of yourself. Take time to look after yourself. Go on a date with your husband, get a massage, take a trip. When you’re happy with yourself, when you have a clear mind, you can face your problems better. It’s not the end of the world. You can still live your life despite having a differently-abled child. Bigay ‘yan ng Diyos, [our children] are a blessing and a gift.
“Julian has taught me so many things in life. He has made me a better person. I have learned to love unconditionally. You develop so much patience; you expand your creativity! I pray for guidance, vision, and energy to make a difference to Julyan and to others like him. Resilience is key. You just go one step at a time.”
I am amazed at how many parents focus mainly on having their children relate with neurotypical (NT) peers. Although the children need to learn how to integrate into our social world, they often cannot carry the weight (pace and complexity) of relating with NT peers.
Often the feeling is “if he is around the NT kids long enough he will learn social skills.” However, socialization develops faster if the children are on the same level socially and develop skills together. Usually when children on the spectrum are included with NT children the interaction is not equal with both partners taking turns regulating the interaction.
Usually either the NT child is regulating most of the play or (more commonly) the child on the spectrum is controlling the interaction, rather than reciprocal co-regulation. When one partner is relating on a different level than the other, learning to co-regulate interaction is difficult.
Also, many of the children simply do not “get it” when trying to keep up with the fast paced, often complexed play strategies of NT children. They may go along for the ride, but really not learn how to engage. Or, they dominate the play so they can pace it and make it predictable for them.
I am not saying don’t include the children with NT peers, however, please teach the other children how to play with your child. Don’t expect them to know how to read your child and understand why he is out of sync with them. Children often reject and/or tease when they do not understand the behavior of the child on the spectrum.
However, with a little awareness training and coaching the NT children are often fine with playing if they understand the child’s behavior. Both the NT peers need to know how to play with your child, as well as the play should be facilitated by an adult to help make the play “user friendly” for all. Even with facilitated play with NT peers is desirable in small doses, remember that it is very exhausting for the child and keep exposure to small doses until he becomes more skilled at relating.
In addition, please consider finding programs or activities for your child to relate and build friendships with other kids on the spectrum. Give them the opportunity to play with children that socialize at the same level as them. Find a local autism support group where you can meet other families and children that are at your child’s social functioning level. Often they are relating on an equal playing field; more literal, less nonverbal communication, similar interests, etc.
When teaching relating skills it is much easier if both children are on the same level so they are more able to co-regulate the back and forth reciprocal play. They will feel more safe and accepted and will relax and enjoy the relating better.
I coach soccer and basketball programs for children on the spectrum, sometimes up to 80-100 children a week over six sessions. Once they have been together for a few months it is amazing to see how comfortable they are with each other; relaxing and supporting each other. Maybe not relating in the same way as NT children do, but co-regulating just the same.
However, it is more on their own terms where they can read the flow of interaction better and feel safe in their own quirky ways. They are more accepted, less pressured, and more relaxed. They do not always like each other (nor doe NT peers), but they feel more comfortable engaging with each other. Relating is about sharing experiences with others in a relaxed and comfortable way. Not tense and draining like trying to relate in NT peer activities.
If you do not have a autism center or support group near you, ask the teachers if there are any other children who relate on the same level that you might be able to build play dates with. Eventually build two or three friends that share common social skills and vulnerabilities. It is ok to focus on exposing your child to brief activities with NT children, but allow them to fall back on relating with others on common ground. They will experience the best of both worlds!
“It took me 38 years to learn that; it took him 10
Does anything look odd to you?
Possibly not – until you recognize that #39 spends 90 percent of his time not in “the group.”
#39 is my son, Tucker.
This is through no fault of his coaches or teammates. It’s just how he is — rarely a part of the group.
Parents of children on the spectrum, hold your breath. Well, honestly – any parent, hold your breath. This post may make you cry.
In fifth grade, a researcher at a local university intereviewed Tucker. The researcher, who was studying children with high-functioning autism, contacted me to see if I thought Tucker would be a good candidate. I replied with an emphatic yes. Tucker is his own best advocate; he’s an advocate for other children on the spectrum.
Since he’s a minor, I stayed for the interview. What a phenomenal experience — to hear your child accurately describe his difficulty with peer relationships is amazing and heartbreaking.
The researcher began by getting to know Tucker. About 15 minutes in he began asking the questions.
R: “Do you know other children with austim?
T: “Oh sure. A few kids at my school. But we’re all different. Do you know about the spectrum?”
R: “Yes, I know about the spectrum. So, are you friends with them?”
T: “Kind of. Sort of. I mean, I guess so. Not really. I know who they are, but they wouldn’t be overnight friends.”
R: “OK. How about other kids at your school? You’re really funny and seem like an awesome kid; I bet you have lots of friends.”
T: “No, I don’t.”
R: “Really? I’m sorry, Tucker; that surprises me. I thought you would have lots of friends. I’m really sorry that you feel you don’t have friends.”
T: “Oh, I have friends. Lots of them. My mom’s friends. The people that she works with really like me. Then I have my dad’s friends; I have all kinds of grownup friends. My teachers are my friends too – and my coaches – Coach Velky, Coach Chaplin, Coach Staack, Coach Snyder, Coach Eckenrod, Coach Leonard. They are my friends. And Lisa from Kwik Star – she’s my friend. She always makes me smile and always talks to me. It’s OK though. Really. The kids make fun of me behind my back when they think I can’t really hear them. I can tell they don’t really want to be my friend. They don’t choose to sit by me. They don’t include me in their parties. They don’t take the time to try to understand. So, I decided to just be friends with grownups. Really it’s a lot easier. I know they will take the time to try to understand me. They will be kind to me. They will not make me feel sad. So, I just choose to be friends with grownups.”
The researcher just looked at me. I stared at Tucker with tears in my eyes.
When we got home, he went to play with our Xbox.
When we got home I went into the bathroom and cried.
I didn’t cry because he has difficulty with peer relationships. I knew this would be a factor – I was anticipating that difficulty. I know he has several boys who are friends – while he may not be on birthday party lists – they would never allow someone to be mean to him.
I cried because he was (and is) OK. He understands his experience. He was (and is) mature beyond his years – making the conscious choice to be with those who want to be with him and not worry about those who don’t.
So, that picture above? It used to bother me – but it doesn’t anymore.
I’ve realized that if it doesn’t bother Tucker, then it cannot bother me.
Tucker has taught me so much about what it is important in life.
Being with those who want to be with us… not worrying about those that don’t.
It took me 38 years to learn that; it took him 10.
Parenting a child on the spectrum can be a bumpy journey to travel. If you are a parent on the journey of advocating for your child, you must stay in the driver seat for the entire ride. Your child should be in the front seat, right along with you, to stay connected, read the road maps together, and navigate the crossroads. Along the way you will pick up passengers, but they should not drive from the back seat. You may pick up teachers, professionals, advocates, friends and relatives to join you on the journey. Some will come and go, and a few may stay for the full ride. These people can be valuable, if supportive. They should add strength and clarity to the journey, help you navigate during the fog and rain, and help you shovel out during the snow storms.
Your first priority is who you take on the ride with you! If the people you pick up on the way do not support you, and hinder your progress, drop them off. Let them walk! If they don’t make you stronger, they need to leave. Heavy baggage will only make the journey harder. They will try and take over the wheel, and steer you off the road. They may take the wrong way, and refuse to turn around when common sense points that you are getting lost. When you see this happening, pull over, let them out, and politely say “goodbye!” Save the space for an advocate that will be a working partner with you, rather than a thorn against you. Through this ride, you want the topics of conversations to be “positive”, strength based, not complaining, whining, and bickering. No fighting, just collaborating, seeing the positive, and relishing the gains.
For those who listen to you and your child, value your vision, and add to your journey, keep them on board. Most will not be able to stay forever, but their influence will provide valuable guidance throughout the journey. They have knowledge and experience that can be valuable for you and your child, but only you can be the driver of this ride. Only you understand, accept, and are totally committed to your child. You know the vulnerabilities, challenges, goals and dreams for you and your child, but they can help provide the framework for making it happen. Keep them on board as long as you can, and replace them with care. Treat them with respect, appreciate and value their opinions. We want people who may agree or disagree respectfully, but allow you to make the decisions. If you start to steer off course, you need honest companions to guide you back. You navigate together, share the experiences, and enjoy the triumphs. They help you navigate, but you continue to drive. When worn out and tired, pull of the side of the road and rest a while. Do not let them drive! When overwhelmed stop off at a rest area, take a breather, go for a short walk, regroup and collaborate. Talk it over; get on the same page, than move back on your journey.
As you start this journey you will feel overwhelmed, scared, and confused. You will know very little, but you do know your child. You will need these riders to help you navigate. However, with or without their support you will become more knowledgeable and stronger as the journey moves on. You will gain experience, read the road maps, listen to the opinions, ask for directions, and navigate the road blocks. When no one in the car has an answer, call an experienced friend; one who has taken this trip already. A friend, or another parent, who has lived this journey, followed this road many times, made the mistakes already and has more of the answers.
Stay in the driver seat, with your child right with you; the two of you navigating together, sharing the experiences, learning together, growing together, and getting stronger together. You want your child to learn “by driving with you”; learning by listening and observing, following your lead, and collaborating with you. Your child must learn how to read the maps, understand the signs, and navigate the cross roads. As he gets older he will need to take over the steering wheel, a little at a time, as his competence and confidence rise. You will both be in the front seat together, but this time with you in the passenger seat, and your child driving. You will still navigate together, share the experiences, and collaborate as usual. You will continue to grow together and become stronger together. You can look back at your riders, smile and share the enjoyment of the accomplishments, and most importantly thank them for their support. Without them this ride would have been a lot bumpier, and the costs much higher. You will look back and see all the wrong turns and misfortunes, but enjoy the fact that you made it through the journey! Everyone is stronger, happier, and looking more forward to the future.
Most importantly, realize it is a long journey, not a race. Take it slow, navigate with purpose, and take frequent breaks to clear you head, collaborate, and stay on course. As you are driving, take frequent opportunities to look over at your child and enjoy the ride. Smile, give fives, thumbs up and knuckles, and focus on the positives. You will find the ride much more enjoyable.
““What’s the hardest part?” And I didn’t even have to think about it. Other people.
“Part of the problem with the word ‘disabilities’ is that it immediately suggests an inability to see or hear or walk or do other things that many of us take for granted. But what of people who can’t feel? Or talk about their feelings? Or manage their feelings in constructive ways? What of people who aren’t able to form close and strong relationships? And people who cannot find fulfillment in their lives, or those who have lost hope, who live in disappointment and bitterness and find in life no joy, no love? These, it seems to me, are the real disabilities.” Fred Rogers
Last year a friend asked me if it was hard and how I manage and if I ever just want to lose it. “It” being this whole raising a child with autism thing. Of course it’s hard and of course there are evenings I collapse on the couch or cry in the bathroom. But isn’t that true for all mothers? How do I manage? About the same as all other moms, I guess. I drink coffee every morning and hide chocolate in the sock drawer. But then she asked another question…
“What’s the hardest part?” And I didn’t even have to think about it. Other people. When you’re dealing with an invisible special need, strangers don’t know about it. As much as I sometimes want to, we don’t pin a sign to Mareto’s shirt explaining his autism. So other people, particularly strangers, give us a lot of attention in the form of staring, dirty looks, snide under-the-breath comments and just overall judgment. I can feel it in the store when Mareto’s getting upset and I have to hide in an empty isle to calm him down. Or when he can’t sit at a table in a restaurant. Or when he blurts out, “Watch out for diesel ten!” when someone says hello.
But even the people who aren’t strangers can be hard. It’s not intentional, but unless they’ve had a lot of experience with autism, most people are largely uninformed. I get it, because up until two years ago so were we! So when Mareto licks the wall, or laughs at inappropriate times, or sniffs random items it can be awkward. The look of shock can sting, and I remember again this isn’t everyone’s normal.
These are all my issues, though. Because Mareto is unaware of these reactions, and most of the time they aren’t even directed at him. They’re directed at me. One evening my husband, John, looked at me and said, “I feel like people are thinking two things when we’re out as a family: your kid is bad and you’re bad parents.” That’s how it feels sometimes. It feels like people think we’re lazy or I’m not doing my job well and if I just tried harder he would behave differently. I felt so guilty when I realized that one of the reasons I was so excited about my other child, Arsema, being potty trained was that people might now see that we actually are capable of potty training and it isn’t laziness that’s keeping Mareto in diapers.
But do you know what’s even worse? When you take your kids to the playground and they’re having a blast. Your little boy notices a group of older children and runs to play near them. He bends down to pick up a piece of bark and his shirt rides up exposing the top of his diaper above his pants. And all the little kids start laughing and pointing and saying, “Look! That boy is wearing a diaper!” Or when the 3-year-old looks at you over gingerbread houses and asks why your precious, funny and brilliant little boy is so dumb. Or when you realize he’s being physically bullied because he hasn’t learned the skill of tattling yet. These are the things that make me sick to my stomach. That moment you realize people are going to stop sneering at you and start sneering at your child hurts deep down in a way that takes the breath out of your lungs.
Now that Mareto is growing older, the differences are more apparent. They can’t be waved away or explained as typical toddler behavior. It’s a little more noticeable when a child the size of a 6-year-old isn’t potty trained. It’s a little harder to protect him from the bullies of the world. And that is now the hardest thing about autism – my inability to shield him forever from judgment, ridicule and mean children and adults.
And the thing that makes it even more mind-boggling is that he is the sweetest boy you could ever hope to meet. He cares deeply about other people. He “rescues” his sister from nap time. He comforts crying children. He loves animals. He is friendly and kind and has fun interests. Yes, he has some hurdles in life that other people don’t have. But he also has a lot of awesomeness that other people don’t have. It comes to him naturally.
So are the endless sleepless nights rough? Yes. Changing a 50 lb boy’s diaper isn’t my favorite. Getting Congress to actually accomplish something would be easier than getting my son to move beyond his three foods. But those things don’t matter much. Those would be the hard parts if we lived in a world where I knew my son was unquestioningly accepted and not just accepted but celebrated for who he is. If we lived in a world where people didn’t pass judgment so easily and were quick to love all people regardless and because of their differences and taught their children to do the same… then the hardest parts of autism would be much different. But we don’t live in that world. And as much as I want to keep him close by my side and never leaving the safety of our home, I know I can’t. He has far too much to offer (and teach) the world for me to do that. He has a joy and innocence and compassion and love and a curiosity that is infectious. The world needs him and more people like him.
A parent writes,
A self-advocate writes,
“The hardest part of autism is people asking everyone but those of us with autism what autism is like. If you really want to know what the hardest part of autism is I’d suggest you look up some of the blogs written by autistic people, because if all you do is listen to the neuro-typical people around us you won’t be any closer to understanding us.”
A parent writes,
“The hardest part of autism is when my daughter apologizes for her slow responses and other challenges she faces. It hurts to see her hurt for something she has no control over.”
A parent writes,
“The hardest part is not knowing what the future holds! I have spent 18 years advocating, cultivating, encouraging, researching. We have made a lot of progress. Yet, I still wonder… Will he attend college, go to senior prom, get married or have children?”
A self-advocate writes,
A parent writes,
“The hardest part of autism for me has nothing to do with my son, it has to do with #autismawareness. I personally would not change one thing about my son (except for the sleeping in part, he RARELY does).”