Why I'll Always Be My Son's 'Therapeutic Mom'

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In the past year, I have heard my friends and others telling me that perhaps now that my son is making gradual progress and overall things seem stable, I may not need to be his “therapeutic mom” any longer and can just be his mom. A few months ago, I started thinking about it. Am I going to be just mom? Really? When will it happen?

From the first days of my son’s life, he needed special care. He was born prematurely; we stayed at the NICU for a long stressful month and were discharged with special instructions for care at home. As months passed, his developmental delays became more and more prominent. Later, he received a diagnosis of autism. He needs support, and part of it is having a therapeutic mom.

Looli and her son
Looli and her son.

What does it really mean to be a non-therapeutic mom? My son is a child with atypical development, so I’m not a typical mom, I’m a therapeutic mom. There are some milestones that he achieves on time, some come later, some he doesn’t achieve at all, and there are some “extra milestones” that many others do not achieve.

If I want my son to look at me, I have to give him a real opportunity to make that happen. I need to have a non-stimulating environment, where he is organized and contained. For example, sitting on a high chair without distractions. Then after I say something or ask a question, I wait. I wait for a while, and then if we succeed, he will look at me.

If my son is engaged in an activity such as running and I tell him to stop, will he? He will not stop. Not because he is not disciplined, or because he does not want to. He is too busy and cannot stop at that moment. My son doesn’t process the information around him in the same way and speed as children with typical development. If I wasn’t a therapeutic mom, I’m not sure I would know how to deal with these issues in a way that will benefit him and also myself.

Is it reasonable to expect that my son will pay attention to me and communicate with me if I’m not making an interesting voice intonation and using facial expressions and dramatic gestures? Chances are, not really. Will my son imitate me or his natural environment? I imitate him a lot, and sometimes, after a while, he will imitate me and it will be amazing.

Can I let my son play on his own for a long time? I probably could, but at this stage when the focus is on the beginning of social interactions, and because this is a very challenging area for him, it really does not help him to play on his own for long periods of time.

Can I assume that my son can manage independently while appropriately supervised at a playground or even at home? We are working on independence, but we need to be a little more cautious as he has low muscle tone and is unstable.

If my son looks at the window and sees a spider outside, and then there is a knock on the door and it’s our occupational therapist, can I immediately draw his attention to her arrival? No, it will be too fast, it can be frustrating and even upsetting. However, if I look at the spider with him, if I validate his experience and take a part in it, he can be available and ready for what’s next.

Will my son give me a hug when I ask him? He really likes to hug his teddy bear, but a human hug, even from Mommy can be perceived as threatening and scary, unexpected and therefore not wanted. If I make my request for a hug in a humorous and entertaining way, slowly approaching him, and if he is amused and in a good mood, he’ll laugh and be happy and even give me a hug.

My son is growing and developing, and making nice gradual progress. He works hard according to his capabilities and pace, and I believe that being a therapeutic mom has helped me to help him expand his play, interact for longer periods of time, imitate, learn to say “Mommy,” and feel understood, loved and important.

In every interaction we have, in every thought, feeling and experience with him, even in my dreams, I’m a therapeutic mom. Instead of struggling with myself or trying to separate the therapeutic from the mom, I am embracing the therapeutic mom in me. I am proud of her and I love her. I may not be the mom I thought I would be, but my son gave me the opportunity to be the best that I can be. He gives my life so much meaning, and my heart is full with bursting love.

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.

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Why I'm OK Being a 'Social Outcast' as a Person on the Autism Spectrum

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I don’t need to be told I’m socially inept. I know that. I have autism. I don’t mind not having many friends. I’ve gotten to this point with a few friends or none, and I’ve realized I don’t need to have lots of friends. I need one or two who truly care about me.

lottie on a boat

I know I’m difficult to get along with. A long time ago I tried to be “normal,” but it was boring, so I went back to being me! But seriously, trying to fit in was making me miserable. I was a square peg being rammed into a round hole, and the problem wasn’t that I wouldn’t fit, it was that I was being damaged in the process. I stopped trying to fit in because it wasn’t good for me. All I care about in life now is being happy; that’s what I strive towards because in the end isn’t that what we all want? Happiness?

A little while ago, I decided I will be me. I will be my unique, quirky, funny self, no questions. Take it or leave it, I won’t change for anyone. If people don’t like me then I don’t need them in my life; if they do, I will cherish them as a friend.

I am me. I am socially inept. I am funny. I am annoying. I am unique. That is never going to change. I realized that when I started to be happy again.

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.

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What Watching ‘The A Word’ Was Like as a Person With Autism

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Well, what can I say? Except that was by far the best program I have ever seen on autism. I am not great at expressing emotions, but I cried throughout certain parts of the one-hour show.

I was a bit skeptical about this show considering most of the others have been stereotypical and focused mainly on our negative traits and “fixing us,” etc., but “The A Word” was completely different from that. I was blown away, and as a person with autism I can say I am impressed and am unable to get over the brilliance of not only the storyline, but the acting, the information, and how they got the traits down to a T. I would easily watch it again right now.

I feel this program changes everything, and if you have not seen it I would highly suggest for you to find a way to watch it, as I could relate to aspects of the character Joe’s life from when I was a child. Parents have been messaging me and telling me they could relate Joe’s traits to their son or daughter, and I can easily see why.

The birthday party scenario was perfect, and it’s true that many people with autism do not get invited to birthday parties. We could send out invitations, but not receive any back. We can feel isolated from the rest of the world, and I feel this party situation (and the football situation) showcased that perfectly. The acting was not false, and I believed every minute of it.

They also focused on many of the positive traits, including intelligence, love and communication in our own special way. One particular quote I enjoyed from the show was, “A cure? It’s not a disease.” And another was how the doctor expressed that autism is not child-exclusive. She did not say that in so many words, but after mentioning all the traits do not present themselves at 5 years old, I thought it was described brilliantly.

The parents arguing, the fall-out with other family members was handled with such realism that I thought I was actually a part of the show. And the special interest with music? That’s what I could relate to the most. The need for headphones for many of us when in a crowded environment was explained well, as well as meltdowns and communicating via our special interest. When it sometimes appears like we’re ignoring you when we’re not, and instead we have difficulty processing information.

Difficulty with sleep, interacting with peers, facial expressions — all done faultlessly, and not one trait was expressed in an over the top manner, which surprised me. Usually at least one of the traits of any TV show or movie is taken to the next level so that it almost seems comical. But no, it was excellent.

I would rate the first episode of “The A Word” 10/10 for its sheer brilliance at tackling a subject so close to home, and all the actors and actresses pulled it off. It deserves an award. I can’t wait to watch and review episode two.

I would go as far as to say it has the potential to change how the general public views autism for the better. It has its negatives and positives, but that’s the reality of it. They kept it real, and damn, here come the tears again.

I believe the show will have a positive impact on the autism community because of the way they showcased the reality of how autism affects the individuals and their loved ones. It did not over-stereotype a specific trait, and they got it perfect. It had such a great impact on me personally as someone with autism because I could see myself as a child and how much I struggled. I had a strong emotional connection to Joe, and it is something that will stay with me for the rest of my life. I would recommend this show to anyone.

Bryan’s review complete, over and out! Please watch “The A Word”!

A version of this post originally appeared on the Asperger’s Syndrome Awareness — Bryan’s Advocacy Facebook page.

The Mighty is asking the following: Describe a scene or line from a show or movie that’s stuck with you through your experience with 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.

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New Show on APT Will Feature Boy With Autism

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Charlie Owens, 11, who lives in St. Louis, Missouri, will appear on a new children’s show called “Mack & Moxy,” in an upcoming episode about inclusion. Owens has autism, and Easter Seals, a nonprofit that supports children and adults on the spectrum, recommended him to be on the program, according to Disability Scoop.

In “Mack & Moxy,” kids appear as themselves, and after a few minutes, they are transformed into animated “Trooper” characters to assist Moxy the raccoon and Mack the moose. Celebrities like Rachael Ray and Josh Duhamel also appear on the show as “Admirables,” and Hank Azaria voices the character of Shellfish Sheldon.

In an episode titled, “A Spectrum of Possibilities,” Mack and Moxy are joined by Owens, or “Trooper Charlie,” and the group meet a bird who also has autism, according to a plot synopsis on TV Guide.

“One of our writers wanted to ensure an episode in season one focused on autism inclusion because his child is on the spectrum,” Kellee McQuinn, co-executive producer for the show told The Mighty. “Everyone has been so passionate about this particular episode and we all understood the sensitivities of having a child with Autism star in a national television show. Charlie’s not an actor; and together we worked together to make sure he was comfortable on the set and well prepared before it came time to taping and recording his episode.”

Check local listings to see when “Mack & Moxy” is on near you.

Clarification: “Mack and Moxy” is distributed by American Public Television (APT). The Mighty previously reported that it was a PBS show. PBS stations will be airing the program, but it is not distributed by PBS or PBS Kids.

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Why 'The King's Speech' Speaks to Me as a Mother of a Son with Autism

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One of my favorite movies is “The King’s Speech.” It is an Academy-award winning (Best Picture, Best Actor, Best Director, Best Screenplay) historical drama based on King George VI’s battle with stuttering and the speech therapist who helped him. Following the abdication of Edward VIII, he was crowned King George VI and saw Great Britain through the Battle of Britain and World War II.

When it was released, some critics and historians pointed out that the movie was not a true story, but a “true-ish” story, with some facts changed, eliminated, or Hollywood-ified — the difference between a drama and a documentary. Regardless of whether it is actually, wholly true, I love its story of quiet bravery, both that of the Duke and Lionel Logue, his speech therapist. I am moved by the respect they developed for each other, and the friendship they developed while navigating around significant cultural, social and economic differences. It is a beautiful movie with gentle humor and dignity.

As a parent of a child on the autism spectrum, “The King’s Speech” has many layers for me. Like some iterations of autism, stuttering was perceived for many generations to be the result of some kind of personal “failing” — failing to control nervousness, fear, or a lack of self-discipline. Like autism, researchers now realize that the causes of stuttering have measurable neurological and physiological origins. Like autism, the causes of stuttering are complicated and not yet wholly understood.

I believe that my son enjoys watching “The King’s Speech” in part because on some level, he can recognize the similarities between the king’s experiences and his own. He sees a man who was born into wealth and power, who has a life many people wish for, but who, like my son, must learn to live with and adapt to challenges that simply came with being who he was, royal title notwithstanding. He may find comfort in the realization that if a king had to adapt, maybe it isn’t so bad that he has to adapt to achieve his goals, too.

In King George VII my son can see a man who had to face his fears on a daily basis — whether it was public speaking, dealing with his overbearing father, or shouldering the burden of leadership — and doing so with dignity and perseverance. My son deals with his fears on a daily basis when he walks out the door to go to school, sits in a classroom being the only child on the spectrum, and adapts his behavior and needs to his neurotypical peers. He sees how friendships can be made in unexpected circumstances, the value of someone who sees a person not a disability, and how challenges can be turned into strengths.

“The King’s Speech” is a movie I have watched many times. It is meaningful to me not only as a great Academy-award winning film, but because it speaks to me as an Autism Mom.

Follow this journey on Autism Mom.

The Mighty is asking the following: Describe a scene or line from a movie that’s stuck with you through your experience with 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: YouTube

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Why We Need to Talk About Autism and Self-Harm

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I can remember like it was yesterday — the day we were told my son is autistic. I have to say, I was overwhelmed by my conflicting emotions.

I didn’t know how to feel, what to do or how to react. I was numb.

In the days that followed, it began to slowly sink in, and really, to be honest, nothing had changed. Except deep down I felt a sense of relief that I had been right all along. And at the end of the day it was just a label. My son was no different; he was still him.

Life ticked on as usual.

What I did next I presume all parents do at one time or another — I found myself with the laptop on my knee Googling “autism.” I just couldn’t help myself.

And oh my goodness what a load of rubbish there is out there on the Internet. It’s enough to scare parents half to death. So much misinformation and ignorance to be found with every click of the mouse. It made me want to wrap him head to toe in cotton wool to protect him from the world.

I also vividly recall sort of mentally ticking so called “symptoms” off like a list.

Well yeah, he does this.

And I suppose sometimes he does that too.

Oh, but no not that… He never does that.

I comforted myself when I stumbled across the links between autism and self-injury. Children who do that must be really “severe,” I thought to myself.

I was wrong.

The anxiety that lives inside my son kind of moves and shifts; it confuses and lulls you into a false sense of security. Its symptoms can increase and decrease according to its environment. And “high-functioning” label didn’t mean my son got a free ticket to bypass the more worrying and far less talked about sides to autism – like self-injury and anxiety.

I soon realized his anxiety could consume him. I love my little man more than life itself, but if you told me if I could lessen his anxiety somehow, my reply would have to be, “Where do I sign up?”

If the doctor had told me that one day in the not-so-distant future my son would have self-injurious behaviors (SIBs), I would have cried there and then. No one wants that for their child, autism or no autism.

But this is exactly where we found ourselves last year, drowning in an ever-spiraling
whirlpool of anxiety. This vicious cycle engulfed him, and I just couldn’t drag him from the darkness. It broke my heart. If I could, I would have swapped places with him in a heartbeat; I just wanted to take his pain away.

He became so consumed by his anxiety that it became extremely challenging for him to learn at school. Just the process of getting there was draining him.

So we put his world on pause and reduced his school attendance to two hours a day. We had to reassess everything and modify his environment drastically for the sake of his mental health.

It was a long and slow journey to recovery — I mean months, not weeks. But we had fun. We went swimming and dive-bombed in the deep end of the pool, savoring each experience and taking our time. We walked the dogs and got wet and muddy; we baked cakes, making a right old mess of the kitchen. And yes we learned math and English, but in his own way, not mine. Until slowly day by day he began to laugh and smile a little more.

He has started at a new school full-time and is genuinely happy there. So his anxiety has shifted again; it no longer consumes his every waking thought.

I knew what my son needed to get better; the world needed to mould around him. And the people around him needed to be flexible, following his lead, truly accepting him for who he was, and then and only then he would trust them to keep him safe and let go of his worries.

I fear that too often our kids are bent so much to fit into our world that they simply snap under the pressure, and this is where they encounter so many problems. Too often, the education systems are just so inflexible.

So you see, now I will never take anything for granted or make assumptions about autism ever again. I will never again think my son cannot possibly be affected in certain ways, and I will always look beyond the label.

Self-harm/self-injury affects approximately 50 percent of people with autism at one point in their lifetime, and I strongly believe we should be talking about this more than we do. It shouldn’t be something only discussed in the doctor’s office or behind closed doors.

As hard as this has been to share, I hope by reading it you can be stronger than I was, and act sooner. Don’t let your child be bent to snapping point. It’s truly my biggest regret.

My son is proof that there is always a light at the end of the tunnel, our kids have so
much to teach us about living in the moment; the dark days can become distant memories. And I am learning that my son has far more to teach me than sitting down and Googling “autism” on my laptop can any day of the week. All I have to do is learn from him, follow his lead and be strong.

Follow this journey on A Slice of Autism.

If you or someone you know needs help, see our suicide prevention resources.

If you need support right now, call the Suicide Prevention Lifeline at 1-800-273-8255.

The Mighty is asking its readers the following: What’s one part about you or your loved one’s disability and/or disease that no one talks about? 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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