To Holly Robinson Peete, From a Fellow Mom of an Adult Son With Autism

I believe Holly Robinson Peete is a rare Hollywood personality — she’s authentic and genuine. What you see on the screen or stage is who you’ll meet in person when the lights are off and cameras aren’t running. I had an opportunity to see her present and then sit down with her one-on-one at the inspirational Power of Possibilities, an event hosted by Community Gatepath to honor people with disabilities.

I was so moved by her words, I wanted to write this open letter to tell her publicly what they meant to me as a mother of an adult son with autism.

Photo credit: Community Gatepath (

Dear Holly,

“Never limit what’s possible for your child.”

Such a powerful statement. And it’s so true, isn’t it, Holly? You proved it when you talked about your family’s journey with autism — how at 2 years old, your son RJ stopped making eye contact and interacting with his twin sister. You knew in your gut (as all of us moms do) that something was wrong. And when he was diagnosed with autism, the doctors told you all the “would nots:”

… He wouldn’t make it through school.

… He would never have real friends.

… He would never have a real conversation.

… He would never say I love you.

… He would never play sports.

Now 18 years later, your son has proved all those “would nots” all wrong!

“He is so phenomenal and advocates for himself. He has challenges but he has a very bright future, and I’m so proud of him because he’s been able to show that you never let anybody limit the expectations or possibilities for your child’s life.”

I was overwhelmed hearing those words because they are also my words, my family’s story and how we always believe in unlimited possibilities. Today my adult son with autism is thriving even with his challenges and is living a happy and fulfilled life. Just like your RJ will as he transitions into adulthood. Of that, I have no doubt.

“I wouldn’t change my son for the world, but I would change the world for my son.”

Yes! Once again you speak my words, as they are the words that reflect the hearts of every special needs mom. 

When I had a chance to sit down with you mom-to-mom, we continued to talk about changing the world for our kids. It was disappointing to hear that many in Hollywood won’t speak about their own personal experiences with autism because they’re afraid of the stigmas attached to it. You told me there has been movement in the right direction, but you are looking for a seismic shift off the Richter scale when it comes to public figures speaking about autism and a national autism initiatives agenda.

When I asked how can we get those outside the special needs community to care, you urged each of us to use every opportunity we have — at a school meeting, a church gathering, a public event, on social media — to spread awareness about autism to let people know how valuable our children are. Do it so there’s always hope for them,” you said.

I’m so excited that you and the entire Peete family will be doing just that by taking your advocacy a step further into the limelight. I can’t wait for your upcoming new docuseries, “For Peete’s Sake,” to get an insider’s look into your family’s life. Since so many teens with autism are transitioning into adulthood like your son RJ, I look forward to watching him get his first job and how you, dear momma, guide him toward becoming more independent.

Like you, I hope your show will put an even greater national spotlight on autism awareness and the need for employment opportunities. I applaud you for putting your family out there so the mainstream can witness how valuable those with autism and special needs are to society. Let’s hope that people and companies will learn that it’s beneficial to look beyond disabilities to discover there’s “power in possibilities.”

The author with her son, Jonathan

“Embrace the out-of-the box… you’ll be surprised and delighted with what you’re going to get.”

Lead photo source: Jodi Murphy/Community Gatepath


New Study Challenges Divorce Stats for Parents of Kids With Disabilities

It’s an (old) statistic every parent hears when their child gets a developmental disability diagnosis: 80 percent. As in, parents of children with developmental disabilities have an 80 percent chance of getting divorced (compared to the average 40-50 percent chance of divorce in the U.S.) A new study is challenging that number in a big way.

Parents of kids with developmental disabilities are no more likely to get divorced than parents of “typical” children, according to findings in this month’s American Journal on Intellectual and Developmental Disabilities. What’s more — while having more children increases the likelihood of divorce in “typical” families, the same isn’t true for families with a child with special needs.

With data from the Wisconsin Longitudinal Study, a long-term study of a random sample of 10,317 men and women who graduated from Wisconsin high schools in 1957, researchers compared the experiences of 190 parents with a child with developmental disabilities to more than 7,250 parents of children without disabilities.

Both parents with and without a child with a developmental disability showed a roughly 1-in-5 chance of divorce. Parents with one typically-developing child increased their chance of divorce when having a second child, but when parents of a child with a developmental disability had a second child, that increase didn’t happen.

“(The findings) suggest that other children in the family may be a vital support system for parents coping with the care of a child with a developmental disability,” said Eun Ha Namkung, who led the study.

h/t Disability Scoop

To My Husband Who Vowed to Be With Me in Sickness and in Health

Ten years ago, we started seriously discussing the idea of marriage. That was oh so long ago. We had so many hopes and goals. We talked about things like having children, finances and matters of health. We knew I had chronic health issues back then, but try as we might, there was no way we could imagine how it would impact our marriage or how much worse I would become.

Remember how much marriage itself was an adjustment? Add in raising babies and dealing with unexpected complications of health issues, and our commitment to each other was both tested and cemented all at once. The scary moments often drew us closer together, while the day-to-day weariness of having to deal with my limitations tended to wear us both down. The frustration sometimes fueled anger and resentment for you and me both.

At times, I wondered if our marriage could handle the strain.

And yet here we are, still very much in this together, and still in love. Ten years ago, I needed flowers and chocolate as a token of that love. Now, while I still enjoy receiving such gifts, I’m overwhelmed with the many other ways you show me love as only you can. The acts of selfless love. The moments you give of yourself when it’s inconvenient and even unpleasant. It’s often the little things that turn out to be a big deal for me, and those are times you go the extra mile without complaining.

Times like the other day when I apologetically mentioned we’d need to bring the wheelchair into town because I know how it can be a hassle, and you cheerfully responded that you were already planning on it. Or like the other night, when you returned from caring for our child in the middle of the night to find me in pain, struggling with spasms throughout my body that wouldn’t stop twisting my arms and legs. You got back out of bed to make sure I took my medication because I couldn’t remember. I felt so loved.

No one knows me and my specific needs better than you do after so many years of living this together. When I’m at my worst and need assistance to get to the bathroom, you’re there facing me, lending your arms for me to grasp for dear life as I fight to make my legs work. You walk backward at the perfect pace so I can try to make my way the few steps it takes to get from bedside to bathroom. In the midst of my concentrating hard to make sure I don’t fall and keep moving forward in this slow dance of sorts, I feel the love again, and my heart bursts with gratitude.

It’s these moments I must remember and cherish when the going gets tough and we don’t seem to be on the same page for anything. When we’re both fed up with it all. When you’re grumpy and I feel all alone. When you’re irritated and complaining, and I forget I’m not the only one in pain. I’m so blessed to have a family who cares and a partner who still loves and cares for me. I know this sort of strain can take its toll on relationships, causing them to crumble. Certainly this was way more than either of us signed up for, and life has turned out differently than either of us hoped or expected. But we’re doing it together, and I’m so grateful.

I’m so glad that while my physical limitations have changed so much of what life is like, we still enjoy life together. Somehow you still find my sense of humor funny. We love to live and laugh together and cherish the moments we get alone in the midst of raising four precious children. Life is difficult at times, but it’s good.

I’m so glad we’ve spent the past 10 years together, and I pray we have many more to come. I’m so blessed to have someone who has stuck with me through everything, especially in sickness and in health.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

When Therapy Is Working for My Son With Autism

I often share our son’s successes, the seemingly minor milestones to some that mean so much more to those in the autism community. Sometimes it’s a new food he has started eating. Sometimes it’s a trip to the store without a meltdown. Sometimes it’s saying a full sentence and shocking us all. Always it’s the direct result of therapy that’s working. 

Some of these therapies have recently come under fire for trying to change the core of who our children are. Some are questioned for their effectiveness and quality.

Unfortunately, we have experienced therapy that doesn’t work with a few therapists who just didn’t get it. Thankfully, we have also worked with a lot more therapists who measure their own success by the difference they make in our son’s life. And that difference has been remarkable.

When therapy is working, sessions are filled with laughter and smiles. When therapy is working, he is learning and growing but thinks he is playing.

When therapy is working, obstacles are overcome and anxiety is lessened. When therapy is working, there are calming hugs and deep breaths when things get a little harder.

When therapy is working, there may be tears of frustration when he can’t quite get it. But there are definitely tears of joy when he finally does.

When therapy is working, he is learning to regulate his senses and in turn is beginning to make sense of the world around him.

When therapy is working, the therapist listens to him and watches him to gauge how things are going. When therapy is working, the therapist listens to us, his parents, to know in which direction we should be heading. And we listen to them to learn the best way to get there.

When therapy is working, his siblings no longer fear they will be hurt by him. They hug him. They laugh with him. Because therapy is working, he is learning to know how he is feeling and how to cope. He is learning how to tell us those feelings, too.

When therapy is working, we are not focused on changing who our child is. We are focused on giving him everything he needs to be the best version of himself.

When therapy is working, they are peeling away the obstacles that try to impede him every day so we can see him.

When therapy is working, he is respected and loved, and the results are beautiful.

Follow this journey on From the Bowels of Motherhood.

To the Teen Who Thinks Looking Different Is Worse Than Dying

When I write, I have time to think and re-write and take all the time I need. But in conversation, I’m not nearly so verbose. I stutter when under pressure sometimes, and when I reach for the perfect word, it eludes me. This isn’t an issue when I’m teaching; I know what I’m talking about, and my position means I can take my time and express myself as well as I can. But when I’m put on the spot, especially about issues I care about, I struggle.

I had an incident like that today. There was an opportunity to maybe get one of my students to look at things a little differently, and I panicked. Words escaped my brain, and I was stumped.

One of my students was reading a magazine and asked me about a woman in the magazine who had a visible chromosomal abnormality. Her face didn’t look like most of our faces. She looked different, and to this 14-year-old, that meant she was ugly. She asked me about her, and I Googled her condition to try and explain why she looked the way she did. After I explained it, her response was, “Imagine looking like that.” She paused, and I waited to see if she felt empathy for this woman or disgust. The next thing she said was, “I think I would kill myself.”

I started to respond. “People are dealt all sorts of different hands, and as a baby, she wouldn’t have known any different,” I started to say. She screwed her nose up and closed the magazine. “But she’s so ugly.”

In my mind, I saw my daughter, Eva, with her eye that made people take a second glance at her, that made people say, “How sad” when they looked at her. The eye I came to not even see when I looked at her.

I swallowed. I couldn’t respond with something clever in that moment. I couldn’t tell the student how the only difference between her and this woman was a chromosome. That it was down to luck and genetics and a spin of the wheel. That who knew what life held for her, and I hope she was never in a situation where someone could say something like that about her. But instead I said, “Don’t be so mean,” and stood up and walked away.

I don’t blame this kid for the things she said. As a teen, I might’ve thought looking like this woman would’ve been a fate worse than death, too. I don’t believe anybody wants to be the person who attracts that kind of attention, particularly teenagers. Especially not in a world that focuses so much on appearances. I’m fairly certain I would’ve felt similarly when I was 14. If I’m honest, I probably still feel some of that — not to that extreme of course, but if given a choice I would still prefer to look as I do than to stand out for looking so different. I’m not proud to admit that, but I would wager most people feel the same.

I remember Googling eye abnormalities before Eva was born and feeling my stomach roil at the thought that my daughter could look like that. Our faces are the window to ourselves. They are, to all intents and purposes, who we are. Or at least who people see us as. People judge us based on that appearance and what it says to them. While it might not always be fair or right, it’s the way we are wired. By that token, our eyes are so important in expressing ourselves and our emotions. I thought about Eva and how much having an abnormal eye would affect how people saw her and treated her.

How do we try to explain and develop understanding and empathy to ourselves and to others when this is the environment and world we live in? How do we change our viewpoints and those of people around us, without forcing people to go through what we’ve been through? Is it even possible?

And then I think about Eva and how she couldn’t see and how that would’ve meant she never saw those differences. And I know it’s possible to feel that way.

Maybe someone who was faster on their feet would’ve managed better than I did today. Maybe they would’ve taken the moment as a chance to try and change this girl’s view. But I didn’t. I panicked. I left that lesson feeling like I had let Eva down. Let myself down.

If I could sit down again and have a do-over, maybe I’d ask her this:

“What if it wasn’t you, but your sister, your brother, your best friend? What if something happened to them that made them look differently? Would your feelings for that person change? Would you stop loving them? How would you feel if you heard someone saying what you just said about them?

“How is this woman who was born that way any different? How is my Eva any different? Are they not deserving of love, respect and dignity, too?”

I always say I’ll have something prepared for next time, but there is so much about this experience that catches me off guard, I doubt that will ever really be the case.

Follow this journey on The One in a Million Baby.

To the Parent Hesitant to Find Out If Your Child Has Autism

To the parent(s) who know deep down that an action needs to be taken to get a diagnosis for your child, this letter is for you.

I know you’re afraid of the answer. Please don’t be afraid.

A diagnosis isn’t the end of the world. It isn’t a life sentence or a death penalty. It’s just a new path for your child, different than the one you may have had in your mind.

As someone on the autism spectrum, I understand.

I know you don’t want your child to get treated differently in school, but a diagnosis will help them longterm. Most important, it will help them understand why they’re a little bit different than everyone else.

I was diagnosed with a learning disability when I was 7, but I didn’t get a bit of relief until I was diagnosed with Asperger’s syndrome at 19. For me, the fact that I couldn’t completely understand myself led me to want to take my own life.

An autism diagnosis is not the end of the road, it doesn’t mean your child is unintelligent and it doesn’t mean he or she will spend all their time in special education classes. But a diagnosis does give you the opportunity to defend your child’s rights. A diagnosis does give them a chance at occupational therapy or speech therapy or something along those lines that may come in handy for them.

The sooner you get an answer for your child, the better.

Please realize you may need to explain something a typical child will automatically know like: bras, deodorant, how to make friends, what is and isn’t OK to say, how to keep a conversation going and even sarcasm. That’s all OK.

Please explain autism to your child. It will help, I promise.

Please understand that meltdowns may occur at home but not at school, and that’s normal. This happens because at home they can relax and be free of society’s social pressures/sensory overload. I’m 26 years old and this still happens to me.

From one person on the autism spectrum to a parent of someone on the autism spectrum, please know this: even if you don’t want your child to be treated differently, it’s important to get that diagnosis.


An Adult Aspie Who Wishes She’d Known Sooner

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