“One day, you will tell your story of how you’ve overcome what you are going through now. And it will become part of someone else’s survival guide.” -Unknown

I have been asked several times since starting this blog if I am worried that I’m sharing too much about Sawyer, or our life as a family. And honestly, sometimes I do worry about that. I don’t ever want to embarrass my kids or family, and I am careful not to reveal too much about where we live or what schools they go to, etc. But the goal of this blog has and will always be to share our experiences as an autism family as a means of encouraging autism awareness and understanding.

If you don’t have a child with special needs, you don’t understand how lonely it can be, and how isolating this life gets sometimes. Even if you have a special needs relative, you can’t fully understand this life until your own child has special needs and you have to alter your life’s routines to cater to that child. Whether your child is on the autism spectrum or has a different disorder such as Down Syndrome, the life of a special needs family is much different than those families not affected by special needs.

It’s hard for all of us. There are a lot of sacrifices we have to make, and it’s not just hard on me, as a special needs parent; it’s hard on the girls as special needs siblings. It’s incredible frustrating and infuriating to hear people make ignorant comments about people like Sawyer that are hurtful and mean. It’s hard to have to miss out on or leave events early because Sawyer can’t handle the noise or because he gets too hot in a crowd. I am a dog person; I love puppies and dogs, and it’s heartbreaking to me that my son feels so scared of them when he sees a dog that he feels like might throw up, pass out, and explode all at the same time. He gets so scared that he wants to run away as fast as he can, but sometimes he is frozen in fear; I’m the same way with snakes, so I understand. It’s hard to have to plan vacations around his needs for space to be alone if needed, especially when you want to go to places like Disney World or on a cruise. It’s hard to watch as someone you love hurts themselves because their brain processes emotions differently than ours, and it can be physically dangerous to try to stop someone who’s in the middle of a meltdown; I’ve seen my friends post pictures of their cuts, bruises, and black eyes so many times. And don’t get me started on the surge of emotions that goes through a mother when her child is mid meltdown and people are pointing, laughing, staring, and whispering. This life can be so hard sometimes, but we do what we have to do because we love Sawyer and we want him to have a good life just as much as the rest of us. We know what happens if Sawyer is triggered by something that overstimulates and upsets him, and we would rather leave or not go to places or events than force him to endure something that’s literally torturous for his nervous system.

Can you imagine being able to hear bits and pieces of all the hundreds of conversations going on within a gymnasium, or to constantly be distracted by the sound of the little metal “clink” as someone taps their foot against a chair and their shoelace hits the chair leg? Can you imagine feeling beads of sweat breaking through your pores, making you feel like your hot skin is cracking under a fire as you begin to sweat in a crowded gym? Can you imagine a crunchy potato chip feeling as rough as glass shards cutting your tongue? Can you imagine going into a store to shop and smelling 20 kinds of strong perfume or being overwhelmed by what looks like a kaleidoscope of color in your vision? How would you like it if you went into a room and everyone around you was yelling, and every woman in the room had bathed in perfume, and someone was eating something near you that smelled disgusting and kept waving the scent in your face, and the music was too loud- all at once? And nobody would let you leave because you should just “deal with it” or “tough it out”? And then if you left, people made fun of you for it or expressed disdain? Or imagine going somewhere and being surrounded by something you’re terrified of, whether it’s mice or spiders or snakes or clowns, and people laugh at you when you scream or tell you to quit crying like a baby because you’re terrified they’re going to hurt you. These are all things Sawyer deals with on a regular basis. His body processes sensations differently than mine or yours, and when people tell me to make him “tough it out” or “deal with it”, it’s all I can do not to roll my eyes or throw out some smartass comment. There are certain things I may encourage Sawyer to endure, if I know it’s not a huge trigger for him. But if you see me comforting my son after something has set him off, you need to understand that it’s because I know my son, and I know that he’s experiencing something that’s making him incredibly uncomfortable and upset and I am doing my job as a mother. If you tell me I need to stop babying him, or that I should force him to stay places or be around situations that make him that upset and uncomfortable, you’re basically telling me I don’t know how to parent my child- and you’re flat wrong.

I share stories about our life here to help people understand what we go through as a family and my hope is that it helps someone out there who doesn’t have a good support system of family and friends that empathize with the choices we have to make. I have been so blessed to have so much love and support from all our loved ones since the moment we first found out Sawyer was delayed, but some people don’t have that and it only makes a lonely situation even worse. If our stories can be a survival guide for some other autism family out there, then sharing and oversharing here is worth it.

I want those people to know that it will and does get better. Not every day is horrible and hard, and there are tons of people out here in the world who understand your life and will be there to support and encourage you when you need it. On the days when you’re angry that this is your life, people like me are here to listen and empathize with you because we have been there too. We get it, and you are not alone.

If anyone out there reading this ever needs to talk or vent about autism life, I’m here for you. I have thought a few times about starting an online forum here on the site, but I figure we all have enough accounts to keep up with without worrying about one more. Plus there are already such great resources out there; I highly recommend the Autism Parenting subreddit and the Special Needs Parenting group on Facebook. As with any online community, people can be a little crazy sometimes but overall both of these communities have been wonderful for me as we go through this journey and Sawyer’s needs are beginning to change. Over the last year or so, we have entered a new territory of aggression, self-harm and debilitating depression for our normally happy-go-lucky boy, and it has been a hard transition for all of us. Being able to talk to other parents who have gone through the same thing and get recommendations for treatments or soothing techniques has been so helpful! ♥