Erin Polk

@erin-polk | contributor
Erin Polk has a Master’s Degree in Education and is a Board Certified Behavior Analyst (BCBA). She also raises an 18 year old with autism, Kreed, who has multiple complex medical issues and is nonverbal, but uses an AAC device to communicate. She lives in Colorado along with Kreed and their three Labradors. Her passion besides raising Kreed is helping other nonverbal teens and adults communicate and empower parents to learn to help their children communicate and continue learning long past early intervention. She can be contacted through her blog or facebook at : www.kreedsworld.blogspot.com or www.facebook.com/kreedsworld
Erin Polk

Child Loss and Taking Trips With Our Medically Complex Son

My son Kreed went on every adventure with me over the last six years. There wasn’t a place I ever thought about not taking him. Sure, he had meltdowns and didn’t always understand safe behavior… but I just took the trips as opportunities to teach him. We were never going to keep Kreed cooped up inside because we were afraid. Kreed taught us not to be afraid. He wanted to experience nature in all its forms and received pure contentment, peace and joy from those moments. Just because it was hard didn’t mean we didn’t do it. Kreed was never alone because we were always with him, even to the very end. I used to sing the song “Never Alone” by Lady Antebellum to him, never knowing how true it was. We lost him too fast. Too soon. I wasn’t ready. I wasn’t ready for our adventure to end. And now all I’m left with our these memories. And it makes me thankful I captured all of them and that we stood unafraid to take him with us. With love, patience and strength, Kreed showed us anything was possible. We dedicated our life to him because that’s what he deserved. To live a full adventure filled us with love and happiness. His life was so hard from not being able to communicate, his body always breaking down on him and everyday daily tasks being so difficult, so why wouldn’t I want to make it the best it possibly could be? And now I sit here with tears rolling down, wondering how Kreed left this life unfinished, and wondering how I will ever get over that. My heart and soul feel empty. But I know he was never, ever alone, and we were so happy to be by his side. We took a road trip to Aspen the last time he almost didn’t make it, and that was hard. We ended up not being able to pitch a tent because it was so crowded and Kreed didn’t quite understand. So we drove around until we found a secluded spot and got comfy in the car. It wasn’t exactly easy that night, but we made it through all the stronger. The next day, we set out on an adventure through Aspen and Independence Pass, and the Twin Lakes. Wherever I wanted to stop, he was game, and he loved the water and wind so much. Even though then he was still so sick, he had joyful moments and was quite the adventurer. We were never without tough times due to communication and behavior, but you see, it simply didn’t matter. Because the moments we captured were always worth more than what it took to get there. We were always unafraid to try new things with Kreed — if it didn’t work out, it didn’t and we learned from it. We were supposed to take another trip to Aspen this summer when he got better. I wish I had known that would have been our only trip, I would have stayed longer and enjoyed more. Don’t wait until it’s too late to have grand adventures with your kids. Autism or medical complexities isn’t a reason to not make this life epic. We don’t know how much time we have with our kids, and I only wish I had known my time was short. Teach. Love. Have adventures and show them how much beauty is truly in this world. We at least know we tried to have Kreed experience as much of this joyous life as possible. It’s been two weeks today since we lost him, and the pain still hurts as much or maybe more. You were never alone, Kreed, and I hope you thought you lived an amazing life and we gave everything we had to you. We love always and forever.

Erin Polk

Special Ed's Brewery Criticized for Mocking People With Disabilities

Dear Special Ed’s Brewery, You don’t get it. Even with your apology and subsequent interviews. You perpetuated stigmas by making intellectual disability something to laugh at. My son is no laughing matter. He was beautiful and smart and loved life. He lived a life without limits, breaking through the limits others put on him and stereotypes like the ones you have decided are funny. Every year over 3 million individuals with disabilities are victims of crimes, including 1.3 million violent crimes. That’s three times the rate for persons without disabilities. They are bullied. Laughed at. Seen as less than. And it is people like you who tell people it’s OK to do that. There is nothing funny about riding the bus for children with disabilities (it’s not the “short bus.”) It’s a bus designed to help those that need it. By making fun of it, you cause so many children who are aware they ride that bus to be self-conscious and have anxiety. Places like yours and people like you are the reason so many aren’t proud to be who they are.Are you proud to make fun of a group of people who have to work so much harder than you do to show the world what they can accomplish? Are you proud to shut down their voices by making a mockery of their lives? Is this the legacy you want your company to have? I don’t know about you, but I would rather be a company that provided jobs to people with disabilities. To stand tall with people seen as different, give them a voice and stand against those who seek to bully and humiliate. Instead, one night you thought it would be hilarious to make fun of them. You perpetuated a stigma that doesn’t need to be there. We lost our son last month, and though he’s no longer with us, I will still do everything in my power to change the view and outlook of those whose abilities are different, not less. In the end, the name of your place and items on your menu told us way more about you than your food. I hope this whole situation gives you new awareness. I hope one day your humanity will show through, and you can become someone others see as kind and compassionate, someone who will lift other people up instead of tearing them down. The Mighty is asking the following: Describe a meme, image or sign you’ve seen shared online that struck a chord with you, for good or for bad. Check out our Submit a Story page for more about our submission guidelines.

Erin Polk

The Different Kinds of Parents We Have to Be for Our Child With Autism

We are the first family who will tell you the joys of our son, Kreed, and the way he sees the world. We are also the family that will tell you how incredibly difficult it is and scary it is to have a child/adult with severe autism and the self-injury and aggression that goes along with it. Kreed can communicate, but he still can’t communicate prior to a meltdown. Tonight… tonight my arms hurt so bad I can barely lift them. Kreed split his lip, bruised his head and cut up his hands. He wanted to damage himself to somehow help the pain elsewhere in his body (migraines and peripheral neuropathy). Not to mention his low blood sugars we are always battling. And it is a battle. We do battle every day. Every. Single. Day. We don’t know which Kreed we will get. Sometimes it’s terrifying watching your son self-injure himself, and you wonder if you are strong enough to protect him from himself and know that you could get seriously hurt in the process. And we have. Been bit, bruised, cut, sliced — everything. For some of us families, we not only have to parent and teach, but we also have to protect. Not protect ourselves, but protect our child from himself. This is incredibly difficult knowing part of your job is to provide that protection. In those moments we aren’t parents; we aren’t the ones kissing the boo boos or snuggling and finding joy. We are fierce and strong, and sometimes have to do things we never thought we would do or knew we would have to do for their safety. No parent wants to think of that. But we have to. We have no choice. He’s our son. And we have moments of joy, and we focus on his quality of life and finding happiness. But some days his body is so racked with pain due to his medical issues that there is no joy to be found that day. Most people with Kreed’s set of disorders would probably tell you they are in immense pain every day, and just waking up and being present is enough. Kreed does so much more some days without a hint of pain. But other days he’s in so much pain, we do battle. So today is not a fuzzy, loving, storytelling the joy we found today or what an interesting way Kreed sees the world. Today was about a battle. About his pain. About his lack of communication. About what severe autism sometimes looks like and what we families have to go through. Even un-screwing the lid to his peanut butter jar brought me pain, and I didn’t think I could do it. Getting Kreed ready for bed was painful and long and hard. Because even after he rages and destroys everything in his wake, we still have to pick up the pieces and move on. We have to be the shoulder for him to cry on, even after he’s tried to harm us. The moment it’s over, it’s over. Then we can go back to being parents. Sometimes it’s easy giving that shoulder immediately. Other days it’s hard and you flinch, fearing a bite instead. The fear can get you some days. Everything can get you some days. Some days are a battle, and you don’t even know if you’ve won. And some days are exhausting, and you don’t know how you will get up the next day and do it all over again. But you do. You always do. Tomorrow we will wake up and try again. We will try to manage his pain and find what makes him happy. We will tweak things and adjust things and hope he comes out with a smile instead of a punch. Because that’s what we do. We are there to pick up the pieces, to love, cuddle, hug and be there — but also to be incredibly strong, fierce and brave for your child. We don’t know which kind of parent we have to be every day, but we always do it with love and show him as much love as possible. Editor’s note: It is with a heavy heart we share the news that Kreed passed away on May 8, 2016. Our hearts are with his family, and we’re so grateful to help keep his memory alive on our site. He was truly one of the mighty. Follow this journey on Kreed’s World.

Erin Polk

Video of Teen With Autism Telling His Mom What It Means to Him

I’ve written thousands of words about my son, Kreed, over the years. Our perspective on raising him, his journey with communication and the heartache through his vast medical conditions. I’ve had so many conversations over the years with Kreed as well, though most centered around his wants and needs and teaching him to comment on his environment. There are a couple of moments that pretty much brought me to tears. We initially asked Kreed if he knew what his diagnoses were, and he replied yes and with the word “autism.” We had never asked him this question in 16 years. I would have assumed he knew because it played such a part in his life. So many people talked about it, and I know he’s seen the word on papers. He was in the hospital during this time, so our conversation was limited but powerful. Some months later, I engaged in a second conversation with Kreed regarding himself — a n introduction of sorts straight from him. It’s not for me to say how he feels about autism and what’s hard or not. So rather than write about Kreed’s autism and how he feels, this video of Kreed using his device (Dynavox Compass) to communicate is far more powerful. Editor’s note: It is with a heavy heart we share the news that Kreed passed away on May 8, 2016. Our hearts are with his family, and we’re so grateful to help keep his memory alive on our site. He was truly one of the mighty. Follow this journey on Kreed’s World and on the Kreed’s World Facebook page.

Erin Polk

What It's Like When My Medically Fragile Son Can’t Tell Me His Feeling

What’s it like having a medically fragile child who can’t tell you his symptoms or what his body is feeling? You hold your breath. You check him over every day for any sign of illness, injury and you hope you find nothing. When there is an injury or illness, you hold you breath. You treat it and hope it doesn’t spread. You keep the dark thoughts in the back of your mind from entering your conscious mind. You pray the doctors are right in their diagnosis and are doing the right thing. You spend a lot of time researching. And hoping. Hoping something will add up. Hoping the symptoms will come together and make sense. You spend a lot time teaching. Teaching the language of pain. Hoping he will understand and be able to start telling you. And knowing how hard it is to teach your child the different types of pain. And silently crying on the inside when he does tell you the pain he’s in. Knowing every day he’s having pounding headaches and he’s telling you it feels like sharp knifes. Then you call doctors. You research. You try to put the pieces together. Treatment begins and you hold your breath. You hope it’s the right thing. But you prepare for it if it’s not. Sometimes you have to protect your child instead of being able to hug and kiss them. This may be one of the hardest things. When your job just becomes protecting and keeping him from hurting himself because the pain inside himself is too great, you often weep at night for the choices you must make. You just want to hug him and tell him it will be OK and you will make it better. Nothing breaks your heart more than watching him go through this. You feel helpless and try to stay calm and keep searching for answers. It’s one thing to be medically fragile, but it’s another thing to not be able to explain your symptoms. Everything is locked up inside his body, and you feel like you have to be a behavior detective to figure out what the symptoms are and the cause of those symptoms. It’s a vicious circle. Through it all, you hold your breath. You love harder than most people can imagine because you never know what the next moment will bring. Will there be a dimple smile and tears of happiness or will it be cries of pain? So you are often holding your breath. And loving. Loving harder than you ever thought imaginable. And when you hug, you hug deeper, stronger and longer than you knew was possible. And you live, live a fuller life than you ever imagined and cherish each moment your child is well and happy and smiling. And you say I love you. Always. As much as possible. So he will always know your love is there and never wavering. “When they ask how far love goes, when my job is done, you’ll be the one who knows.” — Dar Williams. Editor’s note: It is with a heavy heart we share the news that Kreed passed away on May 8, 2016. Our hearts are with his family, and we’re so grateful to help keep his memory alive on our site. He was truly one of the mighty. Follow this journey on Kreed’s World.

Erin Polk

Knowing My Son Was Sick When He Couldn't Tell Me

Six weeks ago we thought our son was gone. He was here but not “here.” He didn’t smile. He needed oxygen 24/7. He could barely move his body. He rarely made a sound and didn’t want to communicate. He looked at us as if he didn’t recognize us. Today, he smiles with his beautiful dimples, he is without oxygen during the day, he can walk again, communicate again and, most of all, he finds joy daily. Now he’s riding a horse, playing sports and enjoying his life again. This is miraculous to us for so many reasons. We had 6 to 8 months of rages. We thought it was low blood sugar, but in reality, his gall bladder was slowly failing him. The rages somehow began to be a daily occurrence, and his intensity ramped up. His previous doctors wrote it off as hormones and autism. We knew it was more but didn’t know what to do, so we moved to a new state. The drive was hard enough with multiple rages. In our new state with a new house, new job and new everything, the rages became something we had never experienced before. The sheer violence we experienced daily could never ever be conveyed in words. For the first time in our lives with Kreed, we were afraid. Feeling that fear was one of the worst experiences of our life. But it also pushed me to fight harder and look harder. We knew our boy was an amazing kid and so loving and generous and joyful. He loved hugs and snuggles and loved to talk every day on his device about food and showers. Yet here he was beating himself, the house and us daily. Something was wrong, and we weren’t going to stop until we found it. We finally got a break when the rages stopped suddenly, and he wouldn’t get out of bed, eat or engage with us at all. It was a break because we finally felt like the doctors wouldn’t see a kid with autism raging, but a kid who was in a health crisis. After four days of no eating and throwing up anything he ate, we sped off to the ER. The rest of our journey is chronicled in both “Out of the Darkness” and “Here but Not Here.” The rest of this story is about his awakening. Our boy finally woke up from the pain, the medications and the fog that took him away from us. It feels incredibly miraculous that he has come back to us, and it’s a testament to his strength and our strength as a family. We have documented our entire experience from beginning to end with no filter. Our pain, our loss, our love, our return, our joy. We documented this journey to show others to never give up. If you know in your gut something is wrong, if you know it’s more than “behavior” and you know your child, keep fighting. If we hadn’t, Kreed may not be here today. If we hadn’t moved and met the incredible doctors at Memorial Hospital in Colorado Springs, Colorado, he may not be with us today. This is also a testament to Kreed’s strength. Our son was in incredible pain, which we may never know or understand the depth of. He tried to tell us and kept asking for the hospital and doctors. We continued to listen and we took him to some doctors and were continually turned away and told that it was nothing. Listen to your kids even when they don’t say much. I am so thankful we continued to take him to the doctor and continued to question him. Never again will I doubt his communication attempts. He knows when something is wrong, and I can’t imagine how frustrating it must have been when he knew no one was listening and he was suffering in so much pain. I can’t imagine how this must have felt for him. No wonder he lashed out so severely until his body finally gave up. I’ll never forget the day our son came back to us. When he smiled again. Laughed again. Hugged again. Kissed again. Communicated again. Those memories have slowly replaced the memories of him lying in that hospital bed and needing a machine to breathe for him. And we know for the rest of our life to fight, fight, fight for Kreed. Fight for communication, fight for health, fight to be listened to, fight for life. I can’t imagine being Kreed, locked inside his mind, unable to fully communicate his thoughts and knowing he’s not always being listened to correctly. Knowing that his body doesn’t always work and causes him pain. I can’t imagine that. And for that reason, I’m more than happy to spend the hours and hours it takes to get him to communicate on his device, teaching him how to do things himself, listen to him, fight for him and try to find new ways to experience joy. We are exhausted more days than not, but I barely feel it because I always keep in mind that I can talk, I can be listened to easily, I can make my own food and I can live a life without relying on other people to do everything for me. He can’t do any of those things and needs 24-hour supervision and someone to help him every step of the way. So no, I don’t feel like my life is over because we have to spend so much time helping him, and no, my exhaustion doesn’t compare to what he goes through every day. And to my dear sweet boy Kreed, I am so sorry. I’m so sorry for not figuring it out fast enough. I promise to fight even harder next time and listen to your words. I will keep teaching you and helping you and most of all, finding even more joy for you to experience. We love you with everything we have and more. Editor’s note: It is with a heavy heart we share the news that Kreed passed away on May 8, 2016. Our hearts are with his family, and we’re so grateful to help keep his memory alive on our site. He was truly one of the mighty.

Erin Polk

Medically Fragile Teen Finds Friendship With Teen on Autism Spectrum

With all the stories about bullying and all the stories about the horrifying things the human race can do to each other, let me bring you another side, where friendship needs no words. This is what should be shared 6,000+ times. Meet Kreed, who is medically fragile, has autism and uses a device to communicate. And meet Skyler, who has Usher’s Syndrome, is deaf, losing peripheral vision, has autism and currently does not have a means to effectively communicate.   Both boys have been underestimated their whole lives. People thought they would never be able to have any kind of friendship. They said they wouldn’t understand. They don’t have compassion. They don’t understand how to love. People have also never understood why Kreed is so loud and makes the movements he does. Skyler has faced challenges most people couldn’t dream about, yet they wonder why he makes the sounds he does and doesn’t listen and seems to go from one thing to the next. But just because we don’t understand, doesn’t make their connection any less. Friendship doesn’t always need words. Here is the photo that proves them all wrong.   Skyler was a little unsure of the hotel surroundings, so I asked Kreed if he would help. Kreed walked over, grabbed Skyler’s hand and they walked in together. Skyler trusted Kreed, and Kreed knew Skyler needed his help. It was amazing to watch — two boys the world has told would never accomplish things such as friendship and love and meaningful relationships. In a world where kids sometimes bully kids with disabilities or where adults make fun of those who are different or use hate speech, here are two boys who have found a way to interact without needing words. They feel. They care. They love. As a special needs parent, I hope and pray that one day my child will find his “tribe.” Someone he can be himself with. Someone who doesn’t mind his quirks. Someone who is just fine with exactly who he is. Kreed doesn’t care when Skyler gets as close as possible to him or when he reaches out to touch him. Skyler has no idea how loud Kreed is and never gets annoyed. He’s realized Kreed is different and similar to himself. So he watches Kreed, follows Kreed and in general, they want to be around each other. They don’t need words to convey what a comfort it is to find your tribe. They just know. And it’s beautiful. I’ve never seen anything more beautiful in my life.   So when we say these kids have no limits, we mean it in every possible way. From communication, to cognitive ability to friendship and love. I don’t care that’s its taken 17 years for Kreed to find a friend because this friendship was worth the wait. I can’t wait to see what the future holds for these two. And I thank them both for restoring hope and love back into the human race. Editor’s note: It is with a heavy heart we share the news that Kreed passed away on May 8, 2016. Our hearts are with his family, and we’re so grateful to help keep his memory alive on our site. He was truly one of the mighty.

Erin Polk

What Special Needs Parents Really Mean When We Say 'I'm Fine'

“I’m fine.” These words are spoken by most parents of children with special needs. What we really mean is we are tired. And sometimes broken, sometimes sad, sometimes hurt, aching or numb. Or we might be excited, shocked, cautiously optimistic. But we say fine because so much of the time it’s the safest thing to say. Some days with Kreed are amazing and wonderful and hearing his voice is the greatest joy of our life. Other days my muscles ache from his rages and I’m numb to my feelings. But deep down inside I’m so incredibly sad for any pain he feels. Like I said — I’m fine. Some days I wish someone would finally look at me and say, “You are most definitely not fine.” But then I know I will still lie through my teeth. Sometimes I ask myself, “Why? Why do we say we’re fine?” I think it’s because the alternative is too great, the emotions are too raw and powerful, and we feel as if we would drown in those emotions if we actually felt them. Not everyone talks about this side. When you’ve spent nights and days awake for weeks or months on end and can no longer even tell the difference between day and night or even if it’s a week day or a weekend. When you lie next to your child at night listening to them breathe and are thankful for each breath they take because you fear when you hear them struggling for breath. Or when you watch your child pound their head into the ground because it hurts so bad, and somehow in their body, hurting their head makes it better. Or when you’re holding your son and the tears roll down his face into your hand while you’re keeping him safe. You would do anything in the world to alleviate their suffering. But I’m fine. I have to be fine. When people ask me how do you do it, the answer is simple. Because I do. Because what other choice do I have? He’s my son. He is my heart. He is my soul. When your soul is hurting, you would do anything to make it better. So I search for answers, I research, I connect with doctors and I never stop until I know he feels better. Because he’s not fine. He is in pain, and he is telling me. His emotions are raw, his feelings are more real than I’ve ever seen and his voice rings true — he can’t say he’s fine when he’s not. I have to be there for him. I have to help him. I have to be fine for him. If I break down, it means nothing will be solved for him. I can’t do that to him. So I’m fine. We do what we can, when we can, for ourselves. Five minutes here. Five minutes there. Or on calm nights we get snuggly and catch up on our DVR. We rejoice in those quiet moments and save up our strength for the storms we know will come. The thing about the storms though — they come, they rage, they blow us around and knock us against walls and then the calm comes. We can breathe. We take time. We heal. We love. We strengthen ourselves for the next storm. Not everyone’s experience is like ours, but I can tell you without a doubt, every special needs parent you meet has weathered storms you’ll never know about, and lived to tell you another day they are fine. Behind every “fine” is a story, a past, a strong heart and soul who has seen more and experienced more than most people will ever realize. Because we are fine. Editor’s note: It is with a heavy heart we share the news that Kreed passed away on May 8, 2016. Our hearts are with his family, and we’re so grateful to help keep his memory alive on our site. He was truly one of the mighty. A version of this post originally appeared on Kreed’s World.

Erin Polk

Accepting That I'm Not a Perfect Parent

I’m not a perfect parent. Sometimes I’m tired. Sometimes I’m hurt. Sometimes I’m so mentally exhausted I can’t think straight. Sometimes I’m stressed beyond belief. Sometimes I don’t do things right for my son, Kreed, or I yell too much or don’t take the time to understand. I’m not a perfect parent. The trick is knowing that no one is. We try, and we do our best for Kreed, but sometimes our best is not super awesome. Sometimes our best is sheer exhaustion. Kreed sometimes has days where he rages all day. Or pees in every part of the house. Or spills food everywhere. Or yells at me all day. Or hits me. He’s not a perfect kid, either. But we love him unconditionally — to the moon and back. Turns out Kreed also loves us unconditionally and forgives us when we have just as shitty days. These dimples sure help. We’d like to think we can be there 100 percent for our kids every second of every day. Sometimes we’re just tired parents. Who wouldn’t be after waking up every two hours at night to put their child back to bed? Who wouldn’t be after cleaning up another mess left for us while we shut our eyes for just. a. second. That’s they way it goes. Like I said, our kids aren’t perfect either. Some days the world is too much, and it’s so much easier to hit and yell and not use a toilet. I get it, I do. Some days Kreed just wants Five Guys for every meal and doesn’t understand that’s not OK. He’s hungry, and he wants their fries, damn it. So we fight and yell and have it out. Then he apologies, I apologize and life goes on. Sometimes life feels like a repeat. Sometimes nothing changes, and it’s a struggle to get through. Other days are amazing. Some days are both. I’m not a perfect parent, and he’s not a perfect kid. So that’s how that goes. But as long as we keep progress in mind — not perfection — I think we’ll be all right. Last year we were at the end of eight months of pure hell. He raged and hurt himself and me badly day after day. He was restrained constantly to keep him from destroying his body or the house or me.  I think I went to a part of myself and my brain that kept the full weight of those eight months far from my consciousness. Now I can barely recall it, and I guess don’t want to. It’s a year later, and there’s much to celebrate. This is not always an easy life. Some days will be better than others. Sometimes the bad days stack up, and you hardly remember what a good day looks like. But it will come. It will be a smile, a nod, a moment of wonderful — something — and the world will be OK for that time — five seconds, five minutes, five hours. That’s what we hold on to. And remember it’s OK. We’re not perfect. We try our hardest, and we love, love, love. And often that’s what saves us all. Editor’s note: It is with a heavy heart we share the news that Kreed passed away on May 8, 2016. Our hearts are with his family, and we’re so grateful to help keep his memory alive on our site. He was truly one of the mighty.

Erin Polk

Adult With Nonverbal Autism Describes Sensory Overload

Meet Sophie Last year I met a young woman through Facebook named Sophie Webster. She lives in the U.K. and we live in the U.S. Although we’re thousands of miles apart, Sophie has taught me far more than any therapist ever has about my son, Kreed. Sophie uses a communication device as well and can type out her thoughts. She’s given me insights into Kreed that’s allowed me to better teach and understand him. I believe Sophie’s words can change the minds of anyone who thinks those who don’t use their natural voice have nothing to say. She spent years unable to speak or be heard, and so many ignored her. Even today, although she uses a device to communicate, people are quick to dismiss her. I asked Sophie if she would write a bit about her experiences. So, without further adieu, here are a few snapshots into Sophie’s world. Sensory overload Sensory overload is the worst feeling in the world! I get it when I see too many people walking past me or if I hear too many noises at one time. For example, in a room of people talking, my brain tunes into everyone else’s conversation, and I struggle to filter the voices out and listen to the carer I’m with. It’s so frustrating and I have to be redirected to listening to my carer. When I get sensory overload it’s like I have 100 buzzing bees in my head, and my head hurts a lot and feels like it will go bang! like a balloon. It’s the most uncomfortable thing ever. I bang my head on things to try and relieve the pressure in my head, to try and stop the feeling. While I’m experiencing sensory overload, I find it hard to talk or make any sentences. My speech just won’t come out as I want it to, and I can’t make the words make sense. I get cross about it and just want to block all noise out and close my eyes and have some peace and quiet. I don’t think anyone can ever truly understand how it feels to experience it, but if you imagine having 50 people trying to talk to you at one time and needing to answer every single one of them, then maybe — just maybe — that’s a little insight into what it feels like. Obsessions I have a lot of obsessions like time and numbers. I like the numbers 0, 5 and 8, so when I used to wear a digital watch, I wouldn’t do anything unless it was on one of those numbers, which, as you can imagine, caused many problems. There are many ongoing battles of obsessions which come into my life daily, such as wanting to always drink from a red or pink straw, drinking from the same cup, sitting in the same seat in restaurants and cafes, standing in the same place at the gym — the list is endless. But my carer is great at working with me and we’re overcoming a lot of hurdles my life easier. Sometimes cracking a new obsession is hard; it makes me so twisted and frustrated inside, and I throw my head back and close my eyes. I can imagine it’s frustrating for my carers and people to witness, but it’s just the way I work the frustration out of my body. Then I try and listen to my carer and understand why we need to do something and what the next step is. It sounds complicated, I bet, but believe me, overall it’s so much easier than just giving into all my obsessions. Communication app I first got a communication app in 2011 for my 21st birthday (Best present ever!). I was having daily meltdowns because I couldn’t verbally tell my carers what was wrong or even say hello to my friends at my day service. I could sign, but not everyone understands that language, so my list of who I could talk to was limited. I decided to throw myself into using my app because I wanted to be heard and it felt good to have a voice (I had waited long enough!). Since then, I’ve never looked back. I hope you’ve enjoyed hearing Sophie’s thoughts and will think about what it’s like for your kiddos and what we can do to better support them. It’s voices like Sophie’s that will ultimately raise awareness and give others understanding.