Why I Mostly Write About Having Hope When It Comes to My Son's Autism

A couple of months ago I wrote a piece about autism’s gifts for the Autism Speaks blog. As usual they posted the piece on their Facebook page as well, and comments followed. Most of them were positive. Many of the commenters shared their own experiences, citing the gifts they thought autism had brought to their families as well.

And there was one comment that just got to me.

“I would like to have an intelligent conversation where we can drop the mask of constantly being happy about this and talk about the things this has ruined for us as well. Mind you, I love my son and would never change him even given the chance. I just want to know that not all parents with children on the spectrum are walking robots forced to grin and bare it. I want to talk about us having mental breakdowns because of the isolation, I want to talk about the anger and hatred we feel because it genuinely sucks. Anybody can be the eternal optimist, and that’s fantastic. Where are the real parents that have issues like me?

Or am I just a sh*tty person because I fully understand that this isn’t all smiles, puzzle pieces and blue light bulbs?”**

I get it. I so, so, get it.

I often start my blog posts with a description of the early days with my son Justin, who is autistic. I write about the harsh realities of having a young child on an involved end of the spectrum. I share with my readers about the insomnia that dogged his days. I talk honestly about his aggression when he couldn’t make himself understood. I speak about how difficult life was for him before he could communicate with his PECS book, and later with his iPad.

I write about the challenges he faced.

I’ve walked the walk that many of you are going through now, watching your sons and daughters face challenges. I’ve struggled too (as has my husband), emotionally, physically and financially. There were days we were living hour to hour, wishing desperately for a magic pill that would make him happy.

And after years and years of challenges and pain, we’ve come through to the other side.

And that’s why I mostly write about having hope.

I will never tell another parent of an autistic child that things will “get better.” Nobody can promise you that, plus everyone’s definition of “better” is different.

But I will say this.

Carry hope with you that your child will feel better. Nurture that hope, breathe life into it, make it grow. I say this because a mom of an autistic child once told me a decade ago that each day I should find at least one bright moment and cling to it, hold it close, take it out and remember it at night no matter how challenging the day was. That advice helped me get through a year and a half of doing ABA therapy with my son six hours a day, five days a week. That wisdom helped push me to be a better teacher, practitioner and parent. That moment of remembrance would comfort me when comfort was not enough to diminish my son’s meltdowns.

That moment of hope would help get me through.

If someone had told me 10 years ago that my son would eventually eat more than one thing, sleep through the night, communicate with a technological device, use a few words on occasion, and most importantly, appear to be a predominantly happy child, I would not have believed it.

But today, after years of therapy, consistency, his own maturity and love, he is all of those things and more.

He seems to love his life. And we love him.

And sometimes a little hope can go a long, long, way.

**This passage has been slightly modified for clarity.

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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What the Education System Would Look Like for My Autistic Son in My 'Perfect World'

If you’ve ever been to an Individualized Education Program (IEP) meeting, there’s a good chance you’ve seen how flawed our education system can be when it comes to our kids with autism. It could be a teacher who doesn’t want to accommodate your child’s extra needs. Or maybe your child doesn’t quite meet the criteria needed to get the extra help, even though they never quite hit the mark for their grade level.

My son will soon be 9, so we have had our fair share of IEP meetings over the years. We’ve had great teachers and we’ve had one who didn’t seem to want to put any extra effort into him. Unfortunately her lack of effort reflected greatly in his end of the year IEP; it was the first time he had ever failed all of his goals.

With the increasing number of children being diagnosed with autism, I feel like our education system needs to be reevaluated. In a perfect world, I believe all teachers would have experience with autistic kids. They would go out of their way to give a little extra time and help to those who needed it, whether they spend part of their time or all of their time in a general education classroom. For children like my own, there would be space available in the type of classroom that would fit his needs.

We are currently in the process of applying to get into an education resource center (ERC) classroom. Currently there are only about 15 spots available in the entire school district. If he doesn’t get accepted, he will continue to spend part of his time in learning resource center (LRC) and part time in a general education classroom, which is becoming harder and harder for him as he gets older. With such limited space, it could take years for him to be accepted. In the meantime, he may just fall farther and farther behind.

I know that none of these things can be changed overnight, but I feel as a community we desperately need to push for changes. We have to fight for our kids and make sure they are getting the best education they can. One they deserve. For the parent who doesn’t feel like their child is getting what they need, don’t be afraid to speak up. Don’t ever stop fighting for what you know they need. Don’t let anyone make you think you don’t know what’s best for you child. We are their biggest advocates, and we must never forget that.

mom and son making funny faces at the camera
Ashley and her son.

The Mighty is asking the following: Share with us an unexpected moment with a teacher, parent or student during your (or your loved one’s) school year. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

When We Took Our Daughter to an Autism-Friendly Ballet Show

I have always enjoyed looking at the photos of my friends who are able to take their typically developing children to see and enjoy the performing arts, especially the ballet.

As much as my husband John and I try to enrich our daughter Samantha’s life with several different activities, this isn’t something we ever felt like we could do for her until last year when we took her to see the Houston Ballet Academy’s autism-friendly adaptive performance of “My First Ballet: Coppélia.”

Monica McDivitt’s daughter, Samantha, with ballet dancers.

Samantha is 15 years old and was born with a chromosome 18q deletion, severe hearing impairment, autism and severe cognitive and developmental delays. She loves costumes and tights, so I decided to dress her like a ballerina for this event. Plus, I knew this was a way she would recognize something special was about to happen.

We were running late (as usual), but we made it to the Houston Ballet Center for Dance, picked up our tickets at will call and then we were kindly escorted to the front row.

Shortly, thereafter, the stage lights dimmed and the ballet performance began. Samantha looked around, smiled, giggled, babbled, flapped her hands, blew raspberries and kicked her legs with much delight. I was at ease because I knew she could be herself and no one would judge her, stare rudely or feel bothered by her behaviors.

I hadn’t been to a Houston Ballet performance in a very long time, so as it began, I was overcome by emotion, and a tear rolled down my face. I was happy and grateful to have this much-needed outing, and I felt a deep admiration for the ballerinas who were dancing so beautifully on stage for Sam and the other children, young adults and their families.

Monica McDivitt’s daughter, Samantha, with ballet dancers.

Although there was a moment when I couldn’t help but selfishly wonder what it would be like to have my sweet Sam wear their gorgeous costumes and dance just like them, I overcame that feeling, held Sam’s hand, watched her smile and appreciated the fact she was able to enjoy the beauty and expressiveness of the ballet just like everyone else.

Of course, this wouldn’t have happened without knowing my sweet friend, Kim Stafford, a former Houston Ballet ballerina who helped to spearhead this event. You see, Kim’s 10-year-old son Jude has autism. After she took him to adaptive shows for “The Lion King” and the Rockettes and discovered his excitement and fondness for the performers, she began to think, “Why not create adapted performances that allow a judgment-free trip to the ballet?”

So she did!

To this day our family is still thankful for the lovely one-hour performance of the story of Swanhilde and Franz and the freedom for our Sam to joyfully babble, shriek, hand flap, kick and blow raspberries at her first ballet!

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

When I Told My Co-Worker My Son Has Autism

Today a co-worker visited my office. She hadn’t stopped by in a while. She was looking around and asked if I had new pictures of my son. Then she said, “He must be talking a lot now.”

So here’s where I get stuck. What should I say? If I say no, he doesn’t talk, I likely have to explain my son’s diagnosis. If I say yes and lie, the conversation will keep moving forward, probably to the weather.

Elizabeth Terrazas’s son.
Elizabeth’s son.

The thing is, I don’t mind explaining my son’s diagnosis. I actually love to talk about my son. I feel my job is to promote awareness and, hopefully, create a world of acceptance for him.

However, I realize not everyone may want to learn about autism. I understand not everyone may be comfortable when it comes to autism. So I always fight with myself when I’m in this kind of situation. Should I say something? Or should I dismiss it and move on?

I’m in these kinds of situations all the time. People tell me, “He must be so excited for Christmas!” or “He most love to play with cars!” I don’t want to make people uncomfortable. But in the end, depending on the situation, I have to make a choice.

Today, I chose to be honest. I chose to let my co-worker know my son doesn’t talk. My son doesn’t play with cars, but he prefers puzzles. My son isn’t fazed by Christmas. My son has autism.

These are the phases I usually see: 1) They’re shocked. Obviously they weren’t expecting this answer. 2) Then they regain their composure. 3) They try to make me feel better and say things like, “He will be fine” or “You will see.” And sometimes they say they know someone who knows someone with autism. During my short two-year experience, I have always received a lot of support.

I’m glad I didn’t lie today. I’m glad I spoke about my son and spread awareness. She kept saying “artistic” instead of “autistic.” She was very sweet. I also know that the time will come when the opposite will happen — when “they” might not want to know.

I read so many other bloggers’ stories about their experiences with people’s lack of empathy and understanding. Until then, please know that if I do open up to you, it’s me putting my heart out there when I say, “My son has autism.” Please be kind.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Why It Took 19 Years for Me to Be Diagnosed With Autism

The short and simple answer is: “Because I am a girl,” but as this is a blog post, I will elaborate on this further.

A few years ago, my mom let me watch a video of myself as a baby. In the video, I start from the age of 11 months and it finishes just before my fourth birthday. The first thing you would notice is how adorable I was! The second thing you might notice is my complete lack of interest in other people in the room. One scene played out as follows: I was a toddler, able to sit up. I was sat amongst about 7 million toys, yet focussed intensely on the one I was holding, a small yellow “rattle” with a spinning bow on it. As I span the bow around and around, my grandfather, who was filming, called out to me over and over again.

“Lucy. Lucy!” He even made silly noises, but I was so absorbed in spinning the rattle that I didn’t even acknowledge him. When the ads came on our TV, I stood up, wobbled to the television and pressed my face against the screen until they stopped. Again, no one was able to communicate with me. The rest of the video was much the same. Me doing something, my family trying to catch my attention and failing miserably. I never held eye contact, even when my grandmother got right in my face. If anyone picked me up, I would wriggle until I was let go.

What was even more interesting is that as I aged in the video, very little changed apart from me getting visibly older and using a few more words. Even when I used words though, they seemed to either be nonsense or echoed (technical term is echolalia). The video seemed to show many traits associated with autism, so why did it take so long to diagnose?

I got taken on by one of my peers at school. She taught me what was “cool” and how to dress. I became a chameleon, naturally trying to copy my peers. It is said this “camouflaging” behavior is quite common in girls in general and that autistic girls are also able to do this to some extent. Of course, some people had concerns as I was very introverted, couldn’t write or do basic arithmetic and only had one friend. My mom even took me to see our doctor when I had what appeared to be a “panic attack” at the age of 6. This was back in 1995 though, and the doctor not only didn’t agree that it was an anxiety attack but laughed at my mom saying, “Don’t be ridiculous, children don’t get anxiety!” We now know that this isn’t true, but at the time, my mom felt silly for even suggesting it and as a result tried to ignore the ever-growing pile of other signs that I was presenting.

It didn’t help that my primary school had a policy of only writing the “good things” on our report cards. I’ve found you can only hide behind the veil of “fitting in” for so long before your peers realize that you are, in fact, nothing like them. By the time I was 11, I had two friends (one at school, one at home), but the majority of my peers were starting to shun me, some even picking on me. The final blow came when, aged 12, I had to go to a different school than my friends, lost my grandmother to cancer and moved within a few months of each other. I won’t go into too much detail right now, but my behavior had now become a serious cause for concern. Despite this and my mom reaching out to our doctor for help repeatedly, nothing was done until I was 14 years old, and even then it was just counseling, which wasn’t very effective for an autistic girl who only wanted to talk about rabbits.

Later that year, after the counseling failed to work, I was referred to the local Child and Adolescent Mental Health Services (CAMHS). I would love to tell you that this is where the positive changes began and I got my diagnosis, but that would be a lie. If anything, I deteriorated further as I fell into a dark pit of mental health problems including depression, general anxiety disorder and obsessive compulsive disorder. At 15, I was diagnosed with Tourette syndrome and at age 17 with OCD, but still no autism. I had also become too old for our local CAMHS, but was still too young for the adult mental health service.

After what felt like an eternity, I was referred to the adult service. My psychiatrist basically said that “girls do not get autism” and that I didn’t have autism “because I cried when my Granny died.” He decided that I had a personality disorder instead, but not which one. I have come across a lot of girls later diagnosed as autistic who were given a personality disorder diagnosis earlier in life. It was a long battle to convince him to refer me to someone who had an autism qualification beyond reading the points in the DSM IV, but eventually I went to London, where I was diagnosed with autism. I was 19 years old.

Since my diagnosis, I have learned a lot about autism and can look back and see how I was affected by it. Another specialist explained that while my writing and verbal skills are shockingly good, the majority of my skills are below average and I have been diagnosed with learning difficulties as a result. Again, this often seems to be the way with girls on the spectrum. I have been placed in that grey area of the spectrum. A lot of people question how someone with such difficulties can go unrecognized for so many years. In my opinion, it is because awareness of how autism presents in females has not been researched enough, and as a result, doctors may be looking for more male-associated traits in us, not finding them, then writing it off as a mental health “thing.” That is why I am spending Autism Awareness Month raising awareness about being a female on the autistic spectrum. Although it has taken many years to get female autism recognized, it is starting to be recognized by more and more people. There are also several good books on the subject! A lot of people still may not realize that females can be autistic as well, which is why raising awareness of autism in girls is so important to me.

a young girl in a pink outfit sitting on a bridge
Lucy as a young girl.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

The Unexpected 'Look' I Got When Explaining My Daughter's Autism and ADHD to an Old Colleague

They say that the eyes are windows to the soul, and I do believe that your eyes never lie. No matter what emotion we are trying to hide, to fight, to keep in check, the eyes are the big giveaway. I am not talking about the obvious eyes raised heavenwards or goggly-eyed staring, I mean those micro expressions that really give away your inner thoughts.

I recently bumped into someone I worked with about 10 years ago. I have always liked her and the confidence she seemed to always exude, so it was really nice to happen upon her. We asked all the usual catch-up questions about life, family, etc., and of course came a question about my daughter. “How is E doing?” Instead of the “Fine,” “She’s great,” “Growing up fast,” I thought I would be completely honest. I said that she was well but we have had our challenges and she was recently diagnosed with autism spectrum disorder (ASD) and attention-deficit/hyperactivity disorder (ADHD).

I didn’t know how she would react, but I was surprised. She didn’t turn away, she didn’t put on the head-to-one-side “Oh dear” face, she didn’t make the I’m-smiling-a-forced-smile-because-I-really-don’t-know-what-else-to-do face, nor did the Oh-my-that-must-be-awful crumpled face make an appearance. Instead, those lovely, dark eyes never deviated from looking at me, and I could see a very subtle welling up of tears. Nothing over the top, just a genuine empathetic response. I could almost hear what she was thinking — “That must be tough, I’ll try and imagine how I would feel.” It made me relieved, warm towards her and really proud of myself for having the guts to share something so shrouded in mystery, lack of understanding and misconceptions.

She may never know how her genuine, caring reaction helped me when I most needed it. When I saw her the following day (our daughters are at the same holiday club) I thought there would be awkwardness, that she might give a distant wave and scurry off — but no, I was wrong. She came back up to me, said “Hi,” started chatting about how her day had been, other old colleagues she knows. She made me feel I could do this. I have tears in my eyes typing this (not for the first time) because I hadn’t realized how nervous I was about telling friends and family about our lovely girl; how I have perhaps been isolating myself expecting the reaction to be negative. I’m going to write that planned email to our friends and family now, and I hope their responses are as warm as this old friend’s was. Even if I don’t see her for another 10 years, she has made a true, deep impact — thank you for making “the look” you gave me when I spoke about my daughter’s ASD and ADHD so different from what I expected.

The Mighty is asking the following: Share a conversation you’ve had that changed the way you think about disability, disease or mental illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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