mom hugging son

Before my son’s autism diagnosis, I had never even heard about the condition. No one in my family was familiar with it, and I knew of nobody who had this diagnosis either. So I started with a blank slate, with absolutely no idea what to do, how to deal with the challenges, who to reach out to or where to start. I had no clue if what I was doing was right or wrong. Just as my successes were my own, so were my failures. We, as a family, learned along the way as we experimented with different things. Over the years we’ve perfected a few things, or so we think, and there are some we are still trying to figure out. Here is a list of my top eight mistakes:

1. Trying to hide his diagnosis

For a few years after my son’s diagnosis, I would avoid discussing his condition to anyone, family or friends. Every time someone asked about his delays, I would evade that discussion or just give a vague answer. It took me three years to say my son is on the autism spectrum. It took another few years for my husband and my family to accept this. What caused this turnaround? It was the realization that talking about it is the best way to increase awareness and encourage acceptance. If I won’t discuss my son’s autism, how can I expect others to accept him? If I have a problem talking about it in the open, people may talk in hushed tones behind my back. I’m proud of my son, not in spite of his challenges but because of them. My change in attitude led to others looking at him in a positive light too. As I educated people about autism and the challenges that my son faces every day, they began appreciating him more and avoiding him less. This, to me, was the first and the most significant step in our journey with autism. With us embracing our son’s autism, the journey became easier. I know there will still be people out there who would not understand our journey, but then not everyone is supposed to.

2. Insisting on age appropriateness:

The phrases “40 is the new 20,” “age is just a number” and “young at heart” sound so good, but suddenly when it came to my son I was obsessed with making sure everything he did was “age appropriate.” I was not comfortable with the fact that he was 7 and still watching nursery rhymes so I kept pushing him to watch other stuff and try different things, but he would invariably walk away. We noticed when he was watching his rhymes, he was happier and more aware of his surroundings. It was then I realized it’s more important that he connect with something than try being someone he is not ready for. The day I stopped trying to impose social standards on him and met him where he was, I found we had more things to do and enjoy together. We were both happy when I accepted my child for what he is rather than what I wanted him to be.

3. Trying to “fix” him all the time

During the initial years of my son’s diagnosis, all my hubby and I did was research the internet for that magic potion that will “fix” his challenges. There never was one. It probably was us who needed fixing. Instead of enjoying his childhood and letting him be a kid that he was, we tried to pack his days with supplements, protocols, therapies, exercises and more protocols. He hardly had time for himself. We hardly had time for him. We were busy ensuring he was like every other kid out there. His uniqueness made us anxious. Eventually, as we came to terms with our reality and at peace with his diagnosis, we realized our son was not a work-in-progress. He was our joy. It’s OK to try and encourage him to reach his maximum potential, but it’s not OK to be obsessed about trying to make him someone he is not. We now have more time during the day for him. He loves going to waterparks and riding roller coasters. He enjoys the wind on his face and rolling down a hill… and we would have never known that had we spent all our time turning our little boy into a project that needed a repair.

4. Thinking he is not “smart enough”

Since my son could not talk, most of the time I assumed he did not know. One of the days while I was teaching him his alphabet and phonetics, I whimsically decided to go on beyond our usual A through E, and I was pleasantly surprised to discover he already knew much more than what I thought he did. There have been several instances after that have proven my smug notion of my son not being so smart was completely unfounded. I have come a long way from there. I’ve noticed flashes of his brilliance in so many things he does. I believe in his abilities much more, and I know his inability to express verbally does not equate with his cognitive skills or intelligence. My son has learned so much by just observing, listening and watching than I thought he was capable of. Every time he proves me wrong, my heart swells with pride a little more!

5. Assuming that all meltdowns are behaviors

Autism is commonly characterized by behavior challenges and so it’s not unusual for parents to believe that every time their autistic child has a meltdown, it has a behavior component to it. For a very long time I was that parent. More often than not when my son had a meltdown, I would insist it was a behavior and that we need to ignore it. That’s exactly what I did. Ignore him. I believe this to be one of my biggest mistakes. When he needed me to understand him, I ignored him. I thought by not paying attention to his behavior I would be able to discourage and eventually eliminate it. Where I went wrong was in believing all meltdowns are just bad behaviors. As I educated myself more I realized I need to be more attentive to my son’s cues. A majority of the time, there is a function to his behavior. It’s not to throw tantrums. It has a very specific reason for its occurrence. For instance, my son would have some phases during the year when his behaviors would increase. He would roll on the floor, and cry and bounce and be really irritable, grinding his teeth, banging his head. I had no clue initially until we realized his behavior peaked during allergy season. He was trying to tell us that his allergies made him extremely uncomfortable. He just didn’t have the words for it. Once we figured that out and took the necessary precautions, we saw a drastic fall in his meltdown. There are many similar examples where we were eventually able to identify the reason for his meltdown, and that really helped us help him. I believe it also helped build a level of trust between our son and us .

6. Thinking he is always in his own world

I learned to think my son is always “in his own world” wasn’t true. I was at a party where all the kids were taking turns performing and singing while my son was in a quiet corner stimming on his favorite toy. After all the kids were done singing we thought of letting our son give it a shot too. He watches a lot of nursery rhymes but we’ve not really heard him sing those unless we prompt and sing most of it while he fills in a few words. As I handed him the microphone, I did not expect much except some mumble. He floored me with not just singing (actually humming… but what matters is that he did it) the same rhyme a little girl had sung just before him (which means he was listening to everything going on in the room) but also after the huge round of applause, he got up, walked up to his audience and sang two more rhymes. It shattered my belief that he is always oblivious of the world around him. What might look like his indifference is not always what it actually is. He might not show it in the most obvious ways that he is observing and absorbing, but he certainly is. I learned never to underestimate him. He might  sometimes wander off into his safe zone, just to take his sensory edge off, but he is very much where he should be… learning and adapting… even though we might not feel it.

7. Sweeping everything under the “autism umbrella”

I’ve, for a very long time, and sometimes even now, done things for him I know he can do if given a chance. One day I watched a motivational speaker with none of his limbs talk about how his parents never treated him any different from his other siblings. He talked about how that helped him become a stronger, more confident person who has achieved some of the most difficult feats like climbing Everest. That was an eye-opener for me. I realized I would not let my son try new things because I was scared he might fail. Now that I’ve stopped sweeping all his skills or the absence of under the umbrella, he is blooming into a more independent kid. I can see the change in him. He explores more and he tries more often. I still help him but not until he has tried enough.

8. Expecting everyone to understand all the time

After the diagnosis, I was in denial for a long time. I had no idea how to react to this new situation. Over the years I’ve learned to live in harmony and enjoy everything my son is. However, even now when I hear about a parent receiving the diagnosis, I’m not sure what to tell them. When I am still struggling with how to best support another parent in such a situation, why should I expect everyone else to be understanding and supportive all the time when they have not even walked a single step with me on this journey? I would initially get upset over people not getting what I was going through, but it finally dawned upon me that maybe they were not supposed to. It’s not their journey. It’s mine. People can be clueless when thrown into a situation like this. A lot of the times they just don’t know what to make out of our situation or how to react to it most appropriately. I think it’s not unusual for someone to be ignorant about something they have not encountered. What I can do is spread awareness. That I can do. I can help people understand autism better so they can be more accepting… I’ll be glad if they do, I’ll work on it if they don’t.

My mistakes taught me where I should have gone and where I went instead. They pushed me to try better and harder in trying to understand my son. My mistakes helped me get a clearer insight into my son, and they helped change my perception of autism for better. My journey is unique because my son is. It will probably take a lifetime to understand him and his challenges, and I’ll probably make more mistakes along the way, but what is important is I learn and evolve so I can be a better parent for my son.

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The car pulls up, you seem in a delighted mood to go shopping and get all the things you need for the week to come, but you know your limits. The car park is suspiciously busy. You think to yourself, “Is this for the shop or just for town parking?” You hope for the latter as the big bold title of the supermarket approaches you with every step you make. Your chosen battle weapons: a handheld scanner, a shopping trolly, an over-enthusiastic parent, sister and grandad and your handheld secret weapon… your smartphone with earphone armor.

The doors open, and you enter cautiously and come facing the fruit and veg section full of colors and bright, peppers, tomatoes and bananas. The sounds are blaring. Beep. “Thanks for shopping with us.” “I haven’t seen you in ages, we should get coffee sometime.” It hits you. You feel like a mouse in a cat’s home, but you are resilient and you keep moving. An army of shoppers march in off-beat time and sound, handheld scanners look for their prey, you attempt to block out the sound with some conversation of your own. “What’s next on the list?” But the armed shoppers progress and your parent seems little disturbed by the war zone taking place.

Your mission is simple: get party food and booze. Every step, though blasting your senses, is a step further to victory. Bleep. Bleep. Bleep. Blurp. Blurp. Ping. Mission accepted. Mission in progress.

You turn to the quiet aisle: canned food, preservatives and dried food. It is unlikely you’ll need anything but best check. The row is mainly browns and oranges, less diverse. This is a sweet relief after the horror show of vibrant vegetables… but good things rarely last. In this game, “the calm before the storm” is applied to the next level: dairy products, cold meats and ready meals.

This row is flooded, a dynamic, chill factor of icy winds and unsolicited smells. Many shoppers find their way here in quick time; the milk, the cheese, the yogurt and pastry can all be found here. You are bubbling up inside. You seem like a snail with a broken shell. Your defenses are weakening. Time to get out the secret weapon: the headphones. You open your handbag and scramble through… a panic comes over you. Your parent looks at you. “You can put your earphones in if you like…” You shake your head. “I don’t know where they are!” You are being attacked with no armor. You retreat to a safe place — the toilets, a huge reduction in sensory exposure, and plonk yourself inside a cubical.

You get out your other secret weapon: your phone. An anchor. You look at cat pictures. You try and control your breathing. No success at first… but slowly and surely, you prepare yourself again to join the battlefield. Though without a shield, you are recharged and live to fight again. Remember:

“Your mission is simple: get party food and booze. Every step, though blasting your senses, is a step further to victory. Bleep. Bleep. Bleep. Blurp. Blurp. Ping. Mission accepted. Mission in progress.”

You come from your hideout and journey to the frozen food section. There you find your crew scanning the area for cheese sticks and pizza. You are breaking stride, determined, undefeated and ready to continue the fight. Nothing can stop you now. You complete this mission, picking up garlic bread, pizza, chicken, spring rolls, ice cream and chips with efficiency and accuracy. You are unstoppable, the best in your rank.

Suddenly, a siren screams at a high pitch, its atomic blast knocking you backwards. It echoes loudly in your ear drums. Nothing else exists except the wailing, a horrendous sounding screeching creature from the bottom of the row, looking down at you from its high chair. The battle has begun.

The creature is between you and the drinks. It seems to care little for your comrades but picks you as its enemy. Its wheels move closer, the wicked shriek coming to you… faster and faster and faster. You leg it. The sound is its weapon. Your team commands you to move out of the location. You made it… here, at last. It can’t hurt you… but something else can: a final shot of the laser handgun, and you are down.

Your comrades surround you. The army gives you odd looks. You fall into your parent’s arms, unable to stand, to think, to process. You feel defeated, crying, clutching your ears, your body shaking violently. You fought your hardest but feel like you’ve failed…

Then, at your weakest moment, your parent gives you their hand. “Come on, let’s get some drinks for Sunday.” You take their hand and though you struggle, you make it. The drinks are loaded into the convoy. You are ever nearer to your checkpoint as you all come closer and closer to the checkout.

You reach the checkpoint. The game is saved, and the final transaction is made. You walk out, though you are being attacked from all ends. Your confidence and determination to leave make you bulletproof.

Your mission is simple: get party food and booze. Every step, though blasting your senses, is a step further to victory. Bleep. Bleep. Bleep. Blurp. Blurp. Ping. Mission accepted. Mission in progress.

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Thinkstock photo by antpkr

When I was growing up, and still emotionally immature, I lashed out a lot. I knew it was wrong, and that only made me feel worse. It wasn’t something I could control on my own. Or at least, I hadn’t learned how to yet. For me, personally, it was an impulse and self-regulation issue.

There were so many times I would get frustrated or upset over something and would need to do something to release that energy. So I would break something (not because I wanted to, but because I’d underestimate my own strength and release the frustration that way). Or I’d rip up my homework. Sometimes, in a last-ditch effort, I’d hurt myself in hopes that it would prevent me from hurting others.

It’s not as though I wanted to make people upset. I just didn’t know how to control myself so I wouldn’t upset others. I needed help with learning and applying self-regulation strategies. Punishment rarely helped me in these situations because I already knew what I was doing was wrong. It frustrated me and even scared me because I could see it happening and I couldn’t prevent it. I would start to get even more upset, and possibly have a full-blown meltdown.

To try and stop it, I had to learn other ways to release my feelings. Maybe I would use a weighted blanket to calm myself. Or I would squeeze some putty really tightly. Or I’d go for a fast walk or swing on a swing. Even listening to some music with lyrics that I could relate to would help me.

As an adult, I still have moments like this. I may still crumple up my homework, but I know to stop and try to focus on my breathing while lying under my weighted blanket. I can see it coming, and while I can’t always prevent it, I now know how to handle it better.

If you struggle with self-harm and you need support right now, call the crisis hotline at 1-800-273-8255 or text “START” to 741-741. For a list of ways to cope with self-harm urges, click here.

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Thinkstock image by monkeybusinessimages

After a stressful and hectic few weeks of planning a house move, having to work, actually moving and trying to settle into a brand new area away from my family and friends, I’ve hit a low, and it’s a big one.

Too much change all at once was never going to be a good thing for me, and, initially as with making the decision to move I thought I’d coped with everything reasonably well. It turns out I haven’t, my mood has suddenly dropped — and I’ve gone from feeling OK about everything to “What the hell have I done?”

There have been a couple of flies in the veritable ointment that have compounded the situation — on moving to our new house we discovered we had horrible, noisy neighbors who liked throwing drunken all-night parties with extremely loud music. The authorities haven’t really helped much, though our landlady has been wonderful. Then two days ago I found out my partner will likely be spending most of the summer away from home — or at least, he’ll be away more than he’s here. That’s the nature of his job and I knew what I was signing up for when we got together, but I think that news, compounded with the problems we’d had with the neighbors, finally tipped me over. On Thursday night I cried myself to sleep, and I have felt unwell since then. It had to hit me sooner or later, and now it’s here, and I’ve got to try and ride it out.

Practically, there’s little I can do. We’ve just enrolled at the doctor’s surgery in town and I have my new patient health check this week. Making sure I go to that and speaking to the nurse to tell her how I feel will be the first step. After that, I’m not sure. I’m hoping I start to pick up and feel better sooner rather than later.

If you’re in the same situation as me and you’re coping with too much change as an autistic person, what can you do to help yourself? Here are a few ideas — it’s not an exhaustive list, but merely a guideline I try and stick to.

1. Create a routine that steadies you  and stick to it. If you find yourself in a period of flux, with little you can do to stop the change, find a period of time each day in which you can create some “routine space,” an anchor you can stick to and have as your safe time. This might help ground you, make you feel calmer and make you feel there’s something steady to cling to.

2. Regular food/regular hydration. I find the first thing to be affected is my appetite, but sticking to regular meal times and keeping hydrated in between helps a lot. Even if I can’t eat much, setting the time aside, usually at the same points every day, again gives me a steadying anchor and means I can at least keep myself fed and watered. I’m also very keen on trying to plan meal times and make sure that although my diet is as varied as possible, I stick to the same types of meals, so I don’t get too overwhelmed with food changes.

3. It’s OK to have alone time. For people with autism, alone time can be absolutely essential and our way of saying “enough is enough” and we need to recharge. Recognize and accept this, and know that it’s perfectly fine to say you want to be alone, to sit quietly, to lie still in bed, or to shut the curtains and sit in darkness to help you recharge. Don’t feel guilty for this and don’t feel the need to justify it either. In times of flux and repeated change, the desire for alone time might increase, especially if you are tired or overstimulated. Your loved ones must try to accept this.

4. Stim, stim, stim. Stimming tools become even more important at a time like this, so make sure whatever yours is, you have access to it, or you can safely carry out your stimming behaviors in a safe place of your choosing. For me, it’s finger tapping to music, it’s running my fingers through my hair and scalp and also using Olbas Oil to inhale as it helps clear my head and calm me.

5. Be kind to yourself and engage in good self-care routines. Autism means our brains are wired totally differently. We don’t see the world in the way other people do. Therefore when things don’t go the way we expect, or there are unexpected curveballs thrown our way, it can lead to all manner of problems. We’re not at fault for this and not to blame. Be kind to your mind — this is the way you’re wired and it won’t change. Accept the bumps in the road, try to create as many safe routines and anchoring points in the day as you can. Think about pleasant ways to treat yourself, such as sitting with a favorite book, DVD, or album to listen to. A small glass of wine, a bar of your favorite chocolate, or other snack treat. A warm bath and hair treatment or face mask. A computer game to escape into — something “happy” to look forward to.

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Thinkstock image by AAGGraphics

Last Tuesday, May 9, during an event with military families in the Eisenhower Executive Office Building, Vice President Mike Pence accidentally swiped a young boy across the face with his arm. According to videos of the event, after the incident, the young boy – later identified as 10-year-old Michael Yee – followed the Vice President around saying, “You owe me an apology.” Pence, finally noticing the boy, apologized directly to him, stating, “I’m very sorry, I didn’t mean to bop you.”

The following day, Fox News’ “Tucker Carlson Tonight” aired a segment about the boy, asking, “Is our youth fragile?” Bill Hemmer, the host that night, asked radio host Tammy Bruce for her take on the situation.

“I guess we’re giving birth to snowflakes now because that looked like that kid needed a safe space in that room,” Bruce replied. Hemmer later added that the boy’s behavior was probably learned.

Following Fox’s segment, the 10-year-old’s mother, Dr. Ingrid Herrera-Yee, went on CNN‘s “The Lead With Jake Tapper” to speak about the way her son, who is on the autism spectrum, was characterized.

“For those who don’t have a child with autism, they need to really rehearse and a lot of their therapy involves practicing social interactions,” Herrera-Yee told Tapper. “For him, it was about manners… It was not meant in any sort of negative way. It’s just him learning the social interaction with someone else.”

After sharing the effect Bruce, Hemmer and internet commenters have had on her family, Herrera-Yee told Tapper she wants people to be more aware of autism and “how our kids interact with the world.” She also asked Fox to apologize:

Just like Michael asked the Vice President, so sweetly, for an apology, I’d want to ask, on his behalf, for Fox News to apologize for having used my son out of context and using those really horrible words to describe him and our family. That’s really what I would want to come out of this – is just more awareness.

And please don’t use kids, whether they’re typically developing kids, doesn’t matter that he’s autistic or he’s a military kid. Forget all that, he’s a kid, and you don’t use kids on as examples on national television like that.

Bruce apologized Tuesday morning on Fox’s “America’s Newsroom.”

“My intention was never to hurt a kid or his mom,” Bruce said.”We had absolutely no idea that Michael was on the autism spectrum.”

I had the distinct honor of being invited to the United Nations Headquarters for World  Autism Awareness Day 2017. I was on a panel with four other people, and moderated by Caren Zucker, the journalist, producer and New York Times bestselling author. Our topic was dating, relationships and marriage.

I shall never forget that moment as I walked up the stairs of the United Nations, so majestic with all the flags from around the world flying in the wind. I first had to go through the security check point, which was equal to that of airport security. Once out of that, I was greeted by a volunteer who was waiting to escort me to the room the event would be taking place in. Finally arriving at the location, I was in awe when I entered the great room with its stadium-style seating. I then saw my name in front of my seat. It was an extremely overwhelming experience.

The event began with an exceptional presentation by world-famous autism researcher Dr. Simon Baron-Cohen. One after another highly-acclaimed individual spoke about autism and what they and their organization were doing to improve the lives and wellbeing of those on the autism spectrum. Representatives from all around the world were there.

I learned firsthand the tremendous amount of work being done on a global scale to help us folks with autism. These people have devoted their lives to helping us. More and more resources are becoming available to individuals with autism and their families. This leads to better outcomes and happier, more productive and fulfilling lives.

Here is the video of the whole event. I can be seen at marker 1:48:32.

UN tables and chairs with a digital nameplate reading Anita Lesko and digital name plates on tables in the background that say Autism Day 2017

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