Jenni Petrey

@jenni-petrey | contributor
Jenni is the mother of two beautiful children; one of whom has been diagnosed with autism spectrum disorder and the other is currently in the diagnosis process. She works part time in an early childhood learning center.
Jenni Petrey

How I Develop My Children's Sense of Interoception

One of the things I have learnt on our autism journey thus far is that you never stop learning. Never! Since O started her therapy sessions, we have begun yet another learning journey. Ever since O started Kindy, we have always struggled to get her to drink water regularly. The issue with not drinking enough water or eating enough food throughout the day leads to other more serious complications. On more occasions than I would like, we have ended up in the emergency department of our local hospital with a very dehydrated child. It was only in talking to O’s key therapist and the school age services coordinator that we realized that perhaps, just perhaps, O’s sense of interoception hasn’t fully developed. I can now hear you asking, what on earth is interoception? First we need to go back to basics. We all know about the five senses: hearing, sight, smell, touch and taste. But there are three others that are considered our hidden senses. Senses that we don’t consciously think about or are aware of on a daily basis. The sixth sense is our vestibular sense — this sense provides our bodies with information as to where our head and body are in space. It helps us keep our balance as we move about. Then we have the seventh sense which is proprioception — this is our body sense that tells us where our body is in relation to the rest of us. It also tells us how much force to exert when performing different activities like hugging someone, shaking hands, cracking an egg open and so on. Then we have an eighth sense: our interoception sense. This is a relatively unheard of internal part of the sensory system and consists of all of the internal sensations we may feel on a daily basis when we’re hungry, thirsty, anxious, nervous or when we need to go to the bathroom. Any sensations that originate from within our bodies stems from the sense of interoception. Receptors in our body organs and skin are constantly sending information about the inside of our bodies to our brain. Our sense of interoception is always there in the background and it isn’t something that we are generally consciously aware of. In some individuals, particularly those who have sensory processing difficulties, this hidden sense may still be developing. And as with sensory processing difficulties, individuals may be under-responsive, over-responsive or a combination of both. Some specialists consider that individuals with sensory processing difficulties may not know how to verbally label the data that their brains receive from the interoceptive sense. If they are not receiving enough data, the sensations they receive may be confusing. And likewise, if their brain is receiving too much data from the interoceptive sense, the sensations may become overwhelming. In O not feeling the need to drink water regularly, in essence means that this part of her interoception sense is under-responsive — she simply isn’t receiving enough data to register that she is thirsty. In O being in a constant state of anxiety at times means this part of her interoception sense is over-responsive. Her brain is receiving too much information and the data becomes a distraction so she is unable to focus on anything else and enters into an anxious state. The tricky thing about our sense of interoception is that the data it sends to our brain is required for a range of basic and advanced functions. These functions range from breathing, being hungry or bring full, needing to go to the bathroom, being aware of our own emotions, being able to manage our own emotions and everything else in between. So it makes sense then that if a child’s sense of interoception is still developing, then they may struggle with recognising and responding appropriately to their own emotions and those of others. If an individual’s brain has difficulties in making sense of the information it receives, then the individual may not be tuned into their internal body cues that assist others to interpret emotions. They may have difficulty “feeling” the different emotions they experience. If an individual is not able to interpret their own different body sensations, then they may have difficulty in identifying their own emotions and the emotions in others. So how can we help children whose sense of interoception may still be developing? One of the activities O’s key therapist has been working on is labelling different emotions and talking about what some of the external and internal feelings she may feel that are associated with these emotions. We have quite a number of body outlines with different sensations written around them: anger, nervous, happy, sad… you get the picture. This has been incredibly beneficial and very effective as O is now starting to recognize the early warning signs of her different emotions and can now verbally tell us how she is starting to feel. Earlier this year, I developed a social story called “My Book About My Feelings” to assist O in labelling her own emotions. The story helps her identify how she felt inside when she was sad or anxious. We regularly read books and talk about how the characters might be feeling in particular situations. When we see our kids experiencing different emotions, we verbally assist them to label their emotions, “Oh you look very excited…..” or “I can see that you are becoming angry/frustrated by ……………” This not only assists them to label their own emotions, but it also provides them with the appropriate language so that the next time, they may be able to verbally express themselves. We also verbally label our own emotions and our internal sensations to the kids. If they recognize they too experience these internal sensations, then they will begin to connect the dots! Interoception issues are not as well known as other sensory processing difficulties. As such, medical professionals are still developing strategies to further develop this sense in those who need it. The great thing about being on a learning journey with our kids is that as we are aware and have a basic understanding of the possible causes behind behaviors and/or functional limitations, we are better able to help. Just having an awareness of the sense of interoception and the implications of this sense still developing means we are able to trial different strategies to see what works best for the kids. It means that we are more understanding when we see them struggle with skills that everyone seems to take for granted. So the next time you see a child who can’t seem to get the hang of toilet training, or they never seem hungry or thirsty, or they fly off the handle at the drop of a hat, keep in mind that perhaps their sense of interoception is still developing. We want to hear your story. Become a Mighty contributor here . Getty image by Rawpixel

Jenni Petrey

Calming Strategies for Meltdowns

Meltdowns are something my child and I deal with, at times, on a daily basis. It is a part of life, and you get used to them and begin to develop strategies to help your children. Eventually, you can get to the point where you are able to recognize when a meltdown is about to occur and may be able to diffuse the situation before the meltdown becomes full-blown. I’ve found it’s all about timing and getting to know your child’s cues. With my daughter O and my son L, there are certain things that just work, so I thought I would share the calming strategies that help us through meltdowns. Your strategies might be different from ours, and that is to be expected. Autism is called a spectrum disorder for a reason! Most of the time our strategies work, but there are times when all we can do is ride out the storm. 1. Remain calm. Always. The main strategy we try to remember is remain calm, no matter what the situation is. This might seem like common sense, and it may be, but at times it can be incredibly difficult to remain calm — especially when your child is struggling. We worked out very early on that raising our voices just didn’t work. O and L weren’t shocked into silence, it had the opposite effect. The louder we raised our voices, the louder they became. By remaining calm, we’ve found we can reduce the amount of stress that is placed on O and L. The last thing a child having a meltdown needs is more stress. 2. Essential oils. Late last year, one of my friends (thank you, Amanda) put me onto essential oils. She gave us four small blends to start off with. I will admit I was a little skeptical at first. How on Earth would oils help my little superheroes? But at that point, we had tried a lot of other things and hadn’t found anything that worked. I still don’t know how they work, but they seem to help. Both O and L look forward to getting their oils. At nighttime, I just roll the bottle behind their ears or on the soles of their feet. The oil doesn’t help them to get to sleep, but it does relax them. I have also tried the relaxation blend, and I must admit the lovely aroma is enough to relax me. The oils have become part of their bedtime routine. O also has a blend to assist her with her anxiety, and it does seem to help her in a small way. I’ve since added a few more blends to our collection. You name the ailment or condition, there is probably an oil or a blend that can help. We’ve tried a migraine blend, a stress blend, one for coughs and they all seem to help. They are worth a try if you’re out of options. 3. Know your child’s triggers and cues. These didn’t take long to work out. Every time we went to a large, crowded, noisy shopping centre with L, he would be in meltdown mode within about 10 minutes of entering the complex. We then worked out that he was in sensory overload. L would give us cues — and still does — when he is in sensory overload and we know that when he starts showing those cues, it’s time to get him out and we only have a very small window to do so. Knowing your child’s triggers means you can either avoid certain situations or prepare your child beforehand. If we know we have to go some where that ordinarily would cause L to have a meltdown, we prepare him beforehand so he knows what is going to happen. We also take along L’s sensory bag so he can self-regulate. L’s sensory bag contains his weighted blanket, a pair of block-out ear muffs and a marble maze. The marble maze is a great fidget toy; L has to concentrate on getting the marble from one end of the maze to the other. By concentrating on what his hands are doing, he can block out some of the noise and busyness around him. Other sensory toys we have used are calm down bottles (warm water, glitter glue and fine glitter), a small plastic bottle with rice in it to shake, squishy plastic balls, plastic chew necklaces and a peek-a-boo bag (fabric bag with a clear plastic window and the bag is filled with beads and small toys to find). Basically, anything that O and L can squash, squeeze, shake or manipulate. All of these assist O and L to focus on anything other than the sensory overload. Both O and L have various stims depending on the mood they are in. Stims or stimming is a self-stimulatory behavior and is considered a way in which people with autism can calm, stimulate and self-regulate their own emotions. L’s therapists have described stimming as a way that L decompresses and releases excess energy. L also stims to calm down — it may sound strange, but by spinning he can help himself to calm down. O chews on her shirt when she starts getting anxious. Stimming can also help other emotions to show. O bounces when she is excited and swings her arms when she is nervous. It might take a while to work out your child’s triggers and cues, but it is something that pays off in the long run. It can make outings a whole lot easier on your kids. 4. Pick your battles. This may be fairly obvious, but at times I think it is something we overlook. O, L and I certainly pick our battles. I know if I skip O’s bedtime ritual, then she will not go to sleep. Spending the extra five minutes to run through her bedtime ritual means she’ll go to sleep quickly and quietly. And it means I get an extra five minutes of cuddles! I would love O and L to eat a meal I cooked every night of the week, but there are some nights when I am so exhausted from the day that it really isn’t worth the stress of a meltdown to make them eat. We do have a deal going that if they try at least a mouthful of something on the plate, they can then have the good old faithful baked beans or spaghetti. If you know you are exhausted, it might be good for your own sanity to just let them go. Know which battles you can pick, it might just make your day or night a little quieter. 5. Be there for your child. Your child might not want you in the room with them when they’re in meltdown mode, but be nearby for them. Be there to make sure they don’t injure themselves or others. By being there, you can reassure your child that everything will be alright. I hope by being nearby, on some conscious level, O and L know I am there if they need me. I don’t sit right next to O or L, as that just seems to agitate them. O and L both don’t like to be touched while they are in the midst of a meltdown; they become quite distressed. I stay within eyesight of them so if need be I can remove objects from them or stop them from hurting themselves and I can comfort them immediately if they choose to come to me. 6. Tantrum or meltdown? One of the major keys is knowing the difference between a tantrum and a meltdown. Children with autism can be prone to meltdowns, but they can also have tantrums. The way we deal with a tantrum is completely different to how we deal with a meltdown. I’ve found the most obvious difference between the two is your child’s ability to talk to you during the event. If they are responding to you, I’ve found they’re more than likely having a tantrum. If they are not able to respond to you, chances are they may be having a meltdown. O makes demands during a tantrum. If we were to give into her demands, we might be reinforcing that behavior. Next time she knows if she says, “If you give me such and such, I will calm down,” she’ll just keep making demands until we cave. During a meltdown, she makes unrecognizable sounds. By knowing the difference between the two, we are able to handle both effectively. 7. Behavior is not done on purpose; it is done for a purpose. This is a rather important point and something I think all parents can use reminding of. It is something I regularly have to remind myself of. When O or L are in meltdown mode, I have to remind myself, in that moment, neither of them may be able to find the words to express how they are feeling or what they need. I guess a good analogy is when a baby cries. Babies can cry for various reasons — when they’re hungry, they’re tired, they have a dirty nappy, they’re over-stimulated, they just want their mom or dad, etc. Parents, very early in, can often figure out what each cry means. A baby may not be able to do much more than cry to express what they need. We as parents need to determine what each cry means so we’re able to respond to them appropriately. I’ve found the situation is similar with a child having a meltdown. It can be difficult not to take what the child says and does personally. I know O and L don’t mean any malice when they’re having a meltdown; they’re not in control of their own bodies. A meltdown can be their way of saying “I am over stimulated” or “I have used up all my energy at school and have none left for home” or “I am scared or worried or anxious.” No child has a meltdown on purpose. I believe the meltdown serves as a form of communication. You just have to work out what they are trying to tell you. 8. Tell your child that you love them. No. Matter. What. A child needs to be loved unconditionally; I believe that’s our job as parents. To show them they are loved, no matter what they may do or say during difficult moments. After O or L has had a meltdown, I always make sure they know I love them. I think it is incredibly important for both of them to hear the words “I love you” after they have expended so much emotional, mental and physical energy. I feel they need to know I am there for them, no matter what. That I will love them and be there for them, always. That loving them is what I’m here for, no matter what. Image via Thinkstock. A version of this post originally appeared on Raising My Little Superheroes. We want to hear your story. Become a Mighty contributor here .

Jenni Petrey

To Anyone Who Needs to Be Reminded It’s OK to Not Be OK

I need to tell you something: it is OK to sometimes not be OK. I’m a Mom, a caregiver, a mediator, an educator, a therapist, a cook and an advocate, among other things, but first and foremost, I’m a human. I have an identity. You have an identity. I hope you don’t compare yourself to anyone because you are as unique as the next person. Remember all the things that make you, you. Give yourself time to breath, time to sit, time to be you, time to recognize that you are amazing, that you are strong. And if people try to criticize you and your decisions, tell them to walk a mile in your shoes. Until they’ve done that, I don’t think they have any right to tell you what you have done wrong or how to run your life or what decisions you should be making. You are doing your best and that’s the greatest achievement of all. You are giving it your all. Be proud of yourself. So you cried, you had a meltdown, a moment. You rolled around on the ground and kicked and screamed and had a tantrum. Who gives a shit! Everyone needs a good cry every now and then. I don’t think it’s healthy to withhold emotion. You did what you needed to do in that moment to survive and continue on with your day. You did this because you are a fighter. Our most basic instinct is survival, and when we are faced with exhausting or difficult or traumatic circumstances, we may want to just give in. It’s the “flight, fight, freeze response.” You may want to take flight and run away, you may want to freeze like a deer in headlights or you may want to fight on. We’ve evolved this way to alert us to danger. This response assists us to act in stressful situations. The “flight, fight, freeze response” is actually pretty cool. It is almost like having superhero powers that we can activate when we need to protect ourselves or our loved ones. The tricky bit is working out which one is your fallback response. You? You’re a Fighter. You didn’t give up, you stood your ground, you put your big kid panties on and fought on. You stood up for what you believe in, for what is right. So you sought medical help in the form of “happy pills.” Do these help you to stay focused and think logically about what is happening around you? If the answer is yes, then you did the right thing. It doesn’t make you weak, it makes you strong, because you can recognize your weaknesses and you recognized that you needed help. You did what you needed to do to keep fighting on. You are a Fighter. Say it with me: “I am a Fighter!” You didn’t give up. I was once told by physical training instructor that, “It isn’t the size of the dog in the fight that matters, it is the size of the fight in the dog.” This will always stick with me. I may be short in stature, but don’t underestimate the fight in me. Don’t let people underestimate the fight in you. I acknowledge all your struggles and your pain. I feel your pain because I have been there, but I’d also like to salute the fighter that is within you. I hope you can be thankful and proud for all the things that you have done that displayed courage and strength and sheer determination… and maybe stubbornness because you didn’t give up. You are a strong person. You admire others from a distance for their inner strength, but did you know that they also admire you? That they can see your inner strength? That they can see the fighter in you? Be strong and be brave. Why? Because you are a fighter! We want to hear your story. Become a Mighty contributor here . Thinkstock photo via amoklv

Jenni Petrey

To Anyone Who Needs to Be Reminded It’s OK to Not Be OK

I need to tell you something: it is OK to sometimes not be OK. I’m a Mom, a caregiver, a mediator, an educator, a therapist, a cook and an advocate, among other things, but first and foremost, I’m a human. I have an identity. You have an identity. I hope you don’t compare yourself to anyone because you are as unique as the next person. Remember all the things that make you, you. Give yourself time to breath, time to sit, time to be you, time to recognize that you are amazing, that you are strong. And if people try to criticize you and your decisions, tell them to walk a mile in your shoes. Until they’ve done that, I don’t think they have any right to tell you what you have done wrong or how to run your life or what decisions you should be making. You are doing your best and that’s the greatest achievement of all. You are giving it your all. Be proud of yourself. So you cried, you had a meltdown, a moment. You rolled around on the ground and kicked and screamed and had a tantrum. Who gives a shit! Everyone needs a good cry every now and then. I don’t think it’s healthy to withhold emotion. You did what you needed to do in that moment to survive and continue on with your day. You did this because you are a fighter. Our most basic instinct is survival, and when we are faced with exhausting or difficult or traumatic circumstances, we may want to just give in. It’s the “flight, fight, freeze response.” You may want to take flight and run away, you may want to freeze like a deer in headlights or you may want to fight on. We’ve evolved this way to alert us to danger. This response assists us to act in stressful situations. The “flight, fight, freeze response” is actually pretty cool. It is almost like having superhero powers that we can activate when we need to protect ourselves or our loved ones. The tricky bit is working out which one is your fallback response. You? You’re a Fighter. You didn’t give up, you stood your ground, you put your big kid panties on and fought on. You stood up for what you believe in, for what is right. So you sought medical help in the form of “happy pills.” Do these help you to stay focused and think logically about what is happening around you? If the answer is yes, then you did the right thing. It doesn’t make you weak, it makes you strong, because you can recognize your weaknesses and you recognized that you needed help. You did what you needed to do to keep fighting on. You are a Fighter. Say it with me: “I am a Fighter!” You didn’t give up. I was once told by physical training instructor that, “It isn’t the size of the dog in the fight that matters, it is the size of the fight in the dog.” This will always stick with me. I may be short in stature, but don’t underestimate the fight in me. Don’t let people underestimate the fight in you. I acknowledge all your struggles and your pain. I feel your pain because I have been there, but I’d also like to salute the fighter that is within you. I hope you can be thankful and proud for all the things that you have done that displayed courage and strength and sheer determination… and maybe stubbornness because you didn’t give up. You are a strong person. You admire others from a distance for their inner strength, but did you know that they also admire you? That they can see your inner strength? That they can see the fighter in you? Be strong and be brave. Why? Because you are a fighter! We want to hear your story. Become a Mighty contributor here . Thinkstock photo via amoklv

Jenni Petrey

To Anyone Who Needs to Be Reminded It’s OK to Not Be OK

I need to tell you something: it is OK to sometimes not be OK. I’m a Mom, a caregiver, a mediator, an educator, a therapist, a cook and an advocate, among other things, but first and foremost, I’m a human. I have an identity. You have an identity. I hope you don’t compare yourself to anyone because you are as unique as the next person. Remember all the things that make you, you. Give yourself time to breath, time to sit, time to be you, time to recognize that you are amazing, that you are strong. And if people try to criticize you and your decisions, tell them to walk a mile in your shoes. Until they’ve done that, I don’t think they have any right to tell you what you have done wrong or how to run your life or what decisions you should be making. You are doing your best and that’s the greatest achievement of all. You are giving it your all. Be proud of yourself. So you cried, you had a meltdown, a moment. You rolled around on the ground and kicked and screamed and had a tantrum. Who gives a shit! Everyone needs a good cry every now and then. I don’t think it’s healthy to withhold emotion. You did what you needed to do in that moment to survive and continue on with your day. You did this because you are a fighter. Our most basic instinct is survival, and when we are faced with exhausting or difficult or traumatic circumstances, we may want to just give in. It’s the “flight, fight, freeze response.” You may want to take flight and run away, you may want to freeze like a deer in headlights or you may want to fight on. We’ve evolved this way to alert us to danger. This response assists us to act in stressful situations. The “flight, fight, freeze response” is actually pretty cool. It is almost like having superhero powers that we can activate when we need to protect ourselves or our loved ones. The tricky bit is working out which one is your fallback response. You? You’re a Fighter. You didn’t give up, you stood your ground, you put your big kid panties on and fought on. You stood up for what you believe in, for what is right. So you sought medical help in the form of “happy pills.” Do these help you to stay focused and think logically about what is happening around you? If the answer is yes, then you did the right thing. It doesn’t make you weak, it makes you strong, because you can recognize your weaknesses and you recognized that you needed help. You did what you needed to do to keep fighting on. You are a Fighter. Say it with me: “I am a Fighter!” You didn’t give up. I was once told by physical training instructor that, “It isn’t the size of the dog in the fight that matters, it is the size of the fight in the dog.” This will always stick with me. I may be short in stature, but don’t underestimate the fight in me. Don’t let people underestimate the fight in you. I acknowledge all your struggles and your pain. I feel your pain because I have been there, but I’d also like to salute the fighter that is within you. I hope you can be thankful and proud for all the things that you have done that displayed courage and strength and sheer determination… and maybe stubbornness because you didn’t give up. You are a strong person. You admire others from a distance for their inner strength, but did you know that they also admire you? That they can see your inner strength? That they can see the fighter in you? Be strong and be brave. Why? Because you are a fighter! We want to hear your story. Become a Mighty contributor here . Thinkstock photo via amoklv

Jenni Petrey

Accepting My Social Awkwardness as a Mom With Autism

I haven’t had much time for self-reflection until just recently. While talking with my daughter about social interactions at school that were puzzling her, I began to take a step back into my inner self, and boy did the memories come flooding back. At times when I am talking with my children or while I am managing one of L’s meltdowns or talking with the little superheroes’ therapists and specialists, I am able to take a step back and I have flashbacks to my childhood, teenage years and even memories of when I was a young adult. So much of my life has begun to make sense now that I have two children on the autism spectrum. In the last 18 months or so, I have had a lot of “a ha” moments. As a child and a teenager I knew that I was different, I just didn’t know what the issue was. As a teenager and young adult, I always felt socially awkward. I craved acceptance and understanding from my peers, but it felt as though I never seemed to be truly accepted for who I was. I was seen as the weird one. The odd one. And at times I felt very isolated from those around me. And those peers who I was most desperate to impress eventually excluded me one way or another, either intentionally or unintentionally. I was laughed at. I was bullied. I always struggled as a teenager to understand why my peers said the things they said, and I struggled to understand their actions. Why does someone say that they are your friend but then act the complete opposite? Why do people say one thing, but mean the opposite? I became a master at reading other people to ascertain who I would or wouldn’t open up to, and this was due to an overwhelming fear of being ridiculed or ostracized. But by my late teenage years, this skill would fail me on a regular basis when I would begin to open up to people, and then be burnt by them within what seemed like a matter of minutes. So my solution was to steer clear of and avoid those I didn’t understand. The only issue with this solution is that becoming a hermit at the age of 17 isn’t good for your mental or emotional well-being. Engaging in conversations were always an effort for me as a teenager. I’d have a tremendous feeling of trepidation leading into every single conversation. I preferred to be alone in my thoughts. I was often alone in my thoughts. I found navigating the politics of social groups and gatherings extremely challenging. Even in my 20s and 30s, this was a challenging task for me to actively participate in. Social settings have always, and still do at times, provoked my anxiety into action. What felt like a million questions would flood my brain and cause my anxiety to go into overdrive. How do I act? What do I say? How do I take the first step into a conversation? Do they think I am weird? Do they like me? Did I just say something “stupid?” Do they now hate me? Am I missing any social cues that make them think I am weird? What social cues am I meant to be looking for? Oh god, am I staring at them? At what point can I leave? I’m then always worried that I am acting weird, because let’s face it, with all of these questions running through my head, I may have seemed aloof, away with the fairies. So then I’d be conscious about just concentrating on the conversation, but by then I’d missed what the conversation was all about, so I was back to the questions. It really is a vicious cycle, and it is incredibly difficult to get out of the cycle. I’ve been stung enough times to know that I don’t know all of the social rules that apply to social gatherings. The thing about social rules is that they are unwritten. Everyone just knows these social rules. But if you are socially awkward to begin with, unwritten social rules are a nightmare. Generally, you only know you’ve broken a social rule after you’ve broken the rule when you are being ridiculed for your mistake. There were those that knew, and still know, the real me. They accepted me for who I was, for who I am. And I am grateful for their friendship. But getting to the place where I’m no longer reserved with people and comfortable enough to show the real me takes a lot of effort on my part, and also time. I have to trust myself to open up, but also be prepared to be shot down. I have always had to exert a little more effort to master the social rules that the majority of the population seem to master with ease. Being socially awkward meant I spent a lot of time sitting back and observing people. Observing and taking mental notes on different social rules. I could see people for who they really were. But sitting back and observing when I probably should have been socializing meant I came across as the shy or quiet or reserved or standoffish one. But I am none of these. I am introverted until you get to know me. It isn’t the best feeling in the world being socially awkward. It can be very isolating. I did spend a lot of time alone, which meant I was happy in my own company, but it also meant that I had a lot of time to run conversations and interactions over and over. This is not a good thing for someone who is socially awkward. I have felt this way for pretty much all of my life, and I have always blamed weakness or depression or anxiety or being a moody teenager. I knew some of my peers felt this way at times, but I just thought they coped better than I did with these feelings. It is a relief to now know there is a reason behind why I didn’t understand social interactions — autism, Asperger’s, being an undiagnosed Aspie girl! I have grown so much as a person, as a mum, since having both children diagnosed with autism, especially now with my daughter. I see so much of myself in her and her struggles at school in understanding her friends. I want both of my little superheroes to know they are never alone in their thoughts and their struggles, as I have been there. I know how it feels, and I understand just how lost these thoughts and struggles can make you feel. And I am determined to equip both of my children with the skills they require to navigate the minefield that is social interactions. I have accepted that being socially awkward is a part of what makes me me, and I have stopped getting caught up in my fears about what others think and feel about me. I am who I am. The socially awkward one! Follow this journey on Raising My Little Superheroes. We want to hear your story. Become a Mighty contributor here . Photo by Demedrol68 / Getty Images.

Jenni Petrey

Accepting My Social Awkwardness as a Mom With Autism

I haven’t had much time for self-reflection until just recently. While talking with my daughter about social interactions at school that were puzzling her, I began to take a step back into my inner self, and boy did the memories come flooding back. At times when I am talking with my children or while I am managing one of L’s meltdowns or talking with the little superheroes’ therapists and specialists, I am able to take a step back and I have flashbacks to my childhood, teenage years and even memories of when I was a young adult. So much of my life has begun to make sense now that I have two children on the autism spectrum. In the last 18 months or so, I have had a lot of “a ha” moments. As a child and a teenager I knew that I was different, I just didn’t know what the issue was. As a teenager and young adult, I always felt socially awkward. I craved acceptance and understanding from my peers, but it felt as though I never seemed to be truly accepted for who I was. I was seen as the weird one. The odd one. And at times I felt very isolated from those around me. And those peers who I was most desperate to impress eventually excluded me one way or another, either intentionally or unintentionally. I was laughed at. I was bullied. I always struggled as a teenager to understand why my peers said the things they said, and I struggled to understand their actions. Why does someone say that they are your friend but then act the complete opposite? Why do people say one thing, but mean the opposite? I became a master at reading other people to ascertain who I would or wouldn’t open up to, and this was due to an overwhelming fear of being ridiculed or ostracized. But by my late teenage years, this skill would fail me on a regular basis when I would begin to open up to people, and then be burnt by them within what seemed like a matter of minutes. So my solution was to steer clear of and avoid those I didn’t understand. The only issue with this solution is that becoming a hermit at the age of 17 isn’t good for your mental or emotional well-being. Engaging in conversations were always an effort for me as a teenager. I’d have a tremendous feeling of trepidation leading into every single conversation. I preferred to be alone in my thoughts. I was often alone in my thoughts. I found navigating the politics of social groups and gatherings extremely challenging. Even in my 20s and 30s, this was a challenging task for me to actively participate in. Social settings have always, and still do at times, provoked my anxiety into action. What felt like a million questions would flood my brain and cause my anxiety to go into overdrive. How do I act? What do I say? How do I take the first step into a conversation? Do they think I am weird? Do they like me? Did I just say something “stupid?” Do they now hate me? Am I missing any social cues that make them think I am weird? What social cues am I meant to be looking for? Oh god, am I staring at them? At what point can I leave? I’m then always worried that I am acting weird, because let’s face it, with all of these questions running through my head, I may have seemed aloof, away with the fairies. So then I’d be conscious about just concentrating on the conversation, but by then I’d missed what the conversation was all about, so I was back to the questions. It really is a vicious cycle, and it is incredibly difficult to get out of the cycle. I’ve been stung enough times to know that I don’t know all of the social rules that apply to social gatherings. The thing about social rules is that they are unwritten. Everyone just knows these social rules. But if you are socially awkward to begin with, unwritten social rules are a nightmare. Generally, you only know you’ve broken a social rule after you’ve broken the rule when you are being ridiculed for your mistake. There were those that knew, and still know, the real me. They accepted me for who I was, for who I am. And I am grateful for their friendship. But getting to the place where I’m no longer reserved with people and comfortable enough to show the real me takes a lot of effort on my part, and also time. I have to trust myself to open up, but also be prepared to be shot down. I have always had to exert a little more effort to master the social rules that the majority of the population seem to master with ease. Being socially awkward meant I spent a lot of time sitting back and observing people. Observing and taking mental notes on different social rules. I could see people for who they really were. But sitting back and observing when I probably should have been socializing meant I came across as the shy or quiet or reserved or standoffish one. But I am none of these. I am introverted until you get to know me. It isn’t the best feeling in the world being socially awkward. It can be very isolating. I did spend a lot of time alone, which meant I was happy in my own company, but it also meant that I had a lot of time to run conversations and interactions over and over. This is not a good thing for someone who is socially awkward. I have felt this way for pretty much all of my life, and I have always blamed weakness or depression or anxiety or being a moody teenager. I knew some of my peers felt this way at times, but I just thought they coped better than I did with these feelings. It is a relief to now know there is a reason behind why I didn’t understand social interactions — autism, Asperger’s, being an undiagnosed Aspie girl! I have grown so much as a person, as a mum, since having both children diagnosed with autism, especially now with my daughter. I see so much of myself in her and her struggles at school in understanding her friends. I want both of my little superheroes to know they are never alone in their thoughts and their struggles, as I have been there. I know how it feels, and I understand just how lost these thoughts and struggles can make you feel. And I am determined to equip both of my children with the skills they require to navigate the minefield that is social interactions. I have accepted that being socially awkward is a part of what makes me me, and I have stopped getting caught up in my fears about what others think and feel about me. I am who I am. The socially awkward one! Follow this journey on Raising My Little Superheroes. We want to hear your story. Become a Mighty contributor here . Photo by Demedrol68 / Getty Images.

Jenni Petrey

To Anyone Who Needs to Be Reminded It’s OK to Not Be OK

I need to tell you something: it is OK to sometimes not be OK. I’m a Mom, a caregiver, a mediator, an educator, a therapist, a cook and an advocate, among other things, but first and foremost, I’m a human. I have an identity. You have an identity. I hope you don’t compare yourself to anyone because you are as unique as the next person. Remember all the things that make you, you. Give yourself time to breath, time to sit, time to be you, time to recognize that you are amazing, that you are strong. And if people try to criticize you and your decisions, tell them to walk a mile in your shoes. Until they’ve done that, I don’t think they have any right to tell you what you have done wrong or how to run your life or what decisions you should be making. You are doing your best and that’s the greatest achievement of all. You are giving it your all. Be proud of yourself. So you cried, you had a meltdown, a moment. You rolled around on the ground and kicked and screamed and had a tantrum. Who gives a shit! Everyone needs a good cry every now and then. I don’t think it’s healthy to withhold emotion. You did what you needed to do in that moment to survive and continue on with your day. You did this because you are a fighter. Our most basic instinct is survival, and when we are faced with exhausting or difficult or traumatic circumstances, we may want to just give in. It’s the “flight, fight, freeze response.” You may want to take flight and run away, you may want to freeze like a deer in headlights or you may want to fight on. We’ve evolved this way to alert us to danger. This response assists us to act in stressful situations. The “flight, fight, freeze response” is actually pretty cool. It is almost like having superhero powers that we can activate when we need to protect ourselves or our loved ones. The tricky bit is working out which one is your fallback response. You? You’re a Fighter. You didn’t give up, you stood your ground, you put your big kid panties on and fought on. You stood up for what you believe in, for what is right. So you sought medical help in the form of “happy pills.” Do these help you to stay focused and think logically about what is happening around you? If the answer is yes, then you did the right thing. It doesn’t make you weak, it makes you strong, because you can recognize your weaknesses and you recognized that you needed help. You did what you needed to do to keep fighting on. You are a Fighter. Say it with me: “I am a Fighter!” You didn’t give up. I was once told by physical training instructor that, “It isn’t the size of the dog in the fight that matters, it is the size of the fight in the dog.” This will always stick with me. I may be short in stature, but don’t underestimate the fight in me. Don’t let people underestimate the fight in you. I acknowledge all your struggles and your pain. I feel your pain because I have been there, but I’d also like to salute the fighter that is within you. I hope you can be thankful and proud for all the things that you have done that displayed courage and strength and sheer determination… and maybe stubbornness because you didn’t give up. You are a strong person. You admire others from a distance for their inner strength, but did you know that they also admire you? That they can see your inner strength? That they can see the fighter in you? Be strong and be brave. Why? Because you are a fighter! We want to hear your story. Become a Mighty contributor here . Thinkstock photo via amoklv

Jenni Petrey

My Boy Is Not Naughty, He Is On the Autism Spectrum

To the elderly man at the supermarket last week who took it upon himself to growl at my son and then tell him he was a very naughty boy, do you realize how sacred you made him feel? To the mother who openly ignored my child as he was trying to say hello to you and your child, and who then said to a mutual friend, “he doesn’t have autism, he is naughty and his mother can’t control him. Period.” Do you know how much you deflated his self-confidence by ignoring him? To the mother who glared at me when my son was having a moment and then told her own son, “I don’t want you to play with that boy, he is very naughty.” Please, do not call my boy naughty. Do not judge my son’s behavior based on your one chance encounter with us. You saw my son when he was at his most vulnerable, and you have judged him on that. My son is not a naughty boy, he has autism. You just happened to notice his  behavior when he was overwhelmed by his surroundings and had entered into sensory overload. Did you know autism is called autism spectrum disorder (ASD)? Did you know ASD encompasses many different attributes but not all individuals diagnosed will present with the same traits? Did you know that my heart breaks every time either of my children are so over stimulated from their surroundings that they enter into a sensory meltdown? Do you know how mentally, physically and emotionally exhausting a meltdown is? Do you know the difference between a tantrum and a meltdown? Do you know what sensory overload is? Many individuals on the spectrum also have sensory issues and these can affect how they process the environment around them. Sensory issues can make noise, lights and sounds seem much more intense to an individual on the spectrum. And at times, the only way that they can communicate how they are feeling is through a meltdown. Every time they leave their home, their “safe haven,” they are entering an unfamiliar, ever changing territory where they can no longer control what happens. We have learned how to minimize the impact of such environments for my son, but at times, he still struggles. The one thing I can’t protect him from is ignorant comments from individuals. So on behalf of my son and others like him, please don’t make a comment or pass judgment on their behavior. We need support, not your negativity. A smile or nod that you understand means more than you can imagine. We want to hear your story. Become a Mighty contributor here . Thinkstock image by MariaDubova

Jenni Petrey

Calming Strategies for Meltdowns

Meltdowns are something my child and I deal with, at times, on a daily basis. It is a part of life, and you get used to them and begin to develop strategies to help your children. Eventually, you can get to the point where you are able to recognize when a meltdown is about to occur and may be able to diffuse the situation before the meltdown becomes full-blown. I’ve found it’s all about timing and getting to know your child’s cues. With my daughter O and my son L, there are certain things that just work, so I thought I would share the calming strategies that help us through meltdowns. Your strategies might be different from ours, and that is to be expected. Autism is called a spectrum disorder for a reason! Most of the time our strategies work, but there are times when all we can do is ride out the storm. 1. Remain calm. Always. The main strategy we try to remember is remain calm, no matter what the situation is. This might seem like common sense, and it may be, but at times it can be incredibly difficult to remain calm — especially when your child is struggling. We worked out very early on that raising our voices just didn’t work. O and L weren’t shocked into silence, it had the opposite effect. The louder we raised our voices, the louder they became. By remaining calm, we’ve found we can reduce the amount of stress that is placed on O and L. The last thing a child having a meltdown needs is more stress. 2. Essential oils. Late last year, one of my friends (thank you, Amanda) put me onto essential oils. She gave us four small blends to start off with. I will admit I was a little skeptical at first. How on Earth would oils help my little superheroes? But at that point, we had tried a lot of other things and hadn’t found anything that worked. I still don’t know how they work, but they seem to help. Both O and L look forward to getting their oils. At nighttime, I just roll the bottle behind their ears or on the soles of their feet. The oil doesn’t help them to get to sleep, but it does relax them. I have also tried the relaxation blend, and I must admit the lovely aroma is enough to relax me. The oils have become part of their bedtime routine. O also has a blend to assist her with her anxiety, and it does seem to help her in a small way. I’ve since added a few more blends to our collection. You name the ailment or condition, there is probably an oil or a blend that can help. We’ve tried a migraine blend, a stress blend, one for coughs and they all seem to help. They are worth a try if you’re out of options. 3. Know your child’s triggers and cues. These didn’t take long to work out. Every time we went to a large, crowded, noisy shopping centre with L, he would be in meltdown mode within about 10 minutes of entering the complex. We then worked out that he was in sensory overload. L would give us cues — and still does — when he is in sensory overload and we know that when he starts showing those cues, it’s time to get him out and we only have a very small window to do so. Knowing your child’s triggers means you can either avoid certain situations or prepare your child beforehand. If we know we have to go some where that ordinarily would cause L to have a meltdown, we prepare him beforehand so he knows what is going to happen. We also take along L’s sensory bag so he can self-regulate. L’s sensory bag contains his weighted blanket, a pair of block-out ear muffs and a marble maze. The marble maze is a great fidget toy; L has to concentrate on getting the marble from one end of the maze to the other. By concentrating on what his hands are doing, he can block out some of the noise and busyness around him. Other sensory toys we have used are calm down bottles (warm water, glitter glue and fine glitter), a small plastic bottle with rice in it to shake, squishy plastic balls, plastic chew necklaces and a peek-a-boo bag (fabric bag with a clear plastic window and the bag is filled with beads and small toys to find). Basically, anything that O and L can squash, squeeze, shake or manipulate. All of these assist O and L to focus on anything other than the sensory overload. Both O and L have various stims depending on the mood they are in. Stims or stimming is a self-stimulatory behavior and is considered a way in which people with autism can calm, stimulate and self-regulate their own emotions. L’s therapists have described stimming as a way that L decompresses and releases excess energy. L also stims to calm down — it may sound strange, but by spinning he can help himself to calm down. O chews on her shirt when she starts getting anxious. Stimming can also help other emotions to show. O bounces when she is excited and swings her arms when she is nervous. It might take a while to work out your child’s triggers and cues, but it is something that pays off in the long run. It can make outings a whole lot easier on your kids. 4. Pick your battles. This may be fairly obvious, but at times I think it is something we overlook. O, L and I certainly pick our battles. I know if I skip O’s bedtime ritual, then she will not go to sleep. Spending the extra five minutes to run through her bedtime ritual means she’ll go to sleep quickly and quietly. And it means I get an extra five minutes of cuddles! I would love O and L to eat a meal I cooked every night of the week, but there are some nights when I am so exhausted from the day that it really isn’t worth the stress of a meltdown to make them eat. We do have a deal going that if they try at least a mouthful of something on the plate, they can then have the good old faithful baked beans or spaghetti. If you know you are exhausted, it might be good for your own sanity to just let them go. Know which battles you can pick, it might just make your day or night a little quieter. 5. Be there for your child. Your child might not want you in the room with them when they’re in meltdown mode, but be nearby for them. Be there to make sure they don’t injure themselves or others. By being there, you can reassure your child that everything will be alright. I hope by being nearby, on some conscious level, O and L know I am there if they need me. I don’t sit right next to O or L, as that just seems to agitate them. O and L both don’t like to be touched while they are in the midst of a meltdown; they become quite distressed. I stay within eyesight of them so if need be I can remove objects from them or stop them from hurting themselves and I can comfort them immediately if they choose to come to me. 6. Tantrum or meltdown? One of the major keys is knowing the difference between a tantrum and a meltdown. Children with autism can be prone to meltdowns, but they can also have tantrums. The way we deal with a tantrum is completely different to how we deal with a meltdown. I’ve found the most obvious difference between the two is your child’s ability to talk to you during the event. If they are responding to you, I’ve found they’re more than likely having a tantrum. If they are not able to respond to you, chances are they may be having a meltdown. O makes demands during a tantrum. If we were to give into her demands, we might be reinforcing that behavior. Next time she knows if she says, “If you give me such and such, I will calm down,” she’ll just keep making demands until we cave. During a meltdown, she makes unrecognizable sounds. By knowing the difference between the two, we are able to handle both effectively. 7. Behavior is not done on purpose; it is done for a purpose. This is a rather important point and something I think all parents can use reminding of. It is something I regularly have to remind myself of. When O or L are in meltdown mode, I have to remind myself, in that moment, neither of them may be able to find the words to express how they are feeling or what they need. I guess a good analogy is when a baby cries. Babies can cry for various reasons — when they’re hungry, they’re tired, they have a dirty nappy, they’re over-stimulated, they just want their mom or dad, etc. Parents, very early in, can often figure out what each cry means. A baby may not be able to do much more than cry to express what they need. We as parents need to determine what each cry means so we’re able to respond to them appropriately. I’ve found the situation is similar with a child having a meltdown. It can be difficult not to take what the child says and does personally. I know O and L don’t mean any malice when they’re having a meltdown; they’re not in control of their own bodies. A meltdown can be their way of saying “I am over stimulated” or “I have used up all my energy at school and have none left for home” or “I am scared or worried or anxious.” No child has a meltdown on purpose. I believe the meltdown serves as a form of communication. You just have to work out what they are trying to tell you. 8. Tell your child that you love them. No. Matter. What. A child needs to be loved unconditionally; I believe that’s our job as parents. To show them they are loved, no matter what they may do or say during difficult moments. After O or L has had a meltdown, I always make sure they know I love them. I think it is incredibly important for both of them to hear the words “I love you” after they have expended so much emotional, mental and physical energy. I feel they need to know I am there for them, no matter what. That I will love them and be there for them, always. That loving them is what I’m here for, no matter what. Image via Thinkstock. A version of this post originally appeared on Raising My Little Superheroes. We want to hear your story. Become a Mighty contributor here .