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My son, Brayden, has had a feeding tube for the last two years due to failure to thrive and sensory issues related to autism spectrum disorder. My son can physically eat by mouth, but he refuses to do so. His sensory issues are severe, and he cannot even smell food without a reaction.

We’ve been in multiple different feeding therapies, and several therapists have dismissed him stating there was nothing they could do for him, that he would need intensive therapy. Our doctor discussed with us placing a feeding tube multiple times since his autism diagnosis and the weight loss and feeding issues began at 18 months old. The doctor would ultimately decided against placing the feeding tube since he would drink the formula by mouth. However, at 4 years old, he began refusing the formula, and he began losing weight again despite every effort by the physicians, therapist, and us as parents. After multiple tests to ensure there wasn’t anything medically affecting his eating and all tests coming back fine, we had no choice but to place the feeding tube. He wasn’t getting the proper nutrition without it. I couldn’t sit by and do nothing when a solution was presented, so with the help of the doctor, we decided it was the best option for us.

Much of the time when the feeding tube comes up in conversation, the response is almost always the same. I usually hear “I’m sorry” followed with a sympathetic look. My response to them is almost always the same as well.

Don’t be sorry. I’m not sorry. Of course, a feeding tube wasn’t in our plan. Of course, we’d love nothing more than for our child to sit down and have a meal with ease, however, he’s growing and thriving. I was watching my son lose weight and seem to waste away before my very eyes. I was seeing him tire easily when playing, and I could feel his bones when I hugged him. My son was pale and was constantly getting sick. We’d tried feeding therapy after feeding therapy with no progress at all. I felt like I was losing my little boy. No, a feeding tube is not what I wanted for him, but it’s what he needed. It’s what we needed. It gives him the nutrition he needs when he cannot otherwise obtain it. It gave him back his life. It gave him back energy, strength, and it of course helped him put weight back on. It’s been a blessing in our lives. The feeding tube gave us our son back, and for that, I’ll never be sorry. So please, don’t be sorry for us either.

Generally, the responses change once I explain what his feeding tube has done for our family. They see that even though it may not be an “ideal” method for feeding our little boy, it’s our method for feeding him, and fed is always best!

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Autism is my superpower. Because I am autistic, I see the world in an entirely different, magical way. I get to be a part of a delightful community. I have a solid part of my identity. It is a large part of who I am and something I am very comfortable with.

Yes, sometimes life can be difficult when I can’t communicate my needs, when my body can’t filter stimuli, and when people don’t understand that I can do things, just maybe a little differently than how they might perform them.

I love being autistic. I wouldn’t change that for anything. I would, however, change society’s view of autism. Each autistic person is different. I believe it’s a color wheel, not a spectrum. Society’s view on what an autistic individual can and can’t do seems to be based only on stereotypes that the mainstream media often supports.

Not all are nonverbal. Not all are amazing at math. We each have different strengths and weaknesses. We each like different things at different intensities. People might think a person and autism are two unrelated things, but in my experience that isn’t the case. You can’t separate me from my autism; it is mine.

If you don’t like autism, you don’t like me. It’s a simple as that. You can’t dislike a huge part of me. Autism influences my thoughts, feelings, interests, reactions and so many other aspects of my life. Autism is my superpower. What’s yours?

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Sensory issues are complex and often misunderstood. Sometimes people don’t understand how to respond to those of us with sensory issues. What might be obvious to someone is not always as obvious to everyone, which I’ve noticed as a person with sensory issues interacting with people who don’t have them. Here are the things that are difficult for me as a person with sensory issues:

1. Staying still: I’ve heard so many people say to me, “It’s OK! Just try to stay still.” The problem is, I cannot all of the sudden stay still. It takes a lot of calming before I’m able to discontinue flapping and shaking. 

2. Staying quiet: Although I’m sensitive to noise, it’s near impossible for me to stay quiet. Personally, I have extreme trouble with this. I feel that every time a noise suddenly erupts through the air or something suddenly touches me, I burst straight into a scream. For me it can be an unhealthy yet habitual reaction. 

3. Brightness: Once I had a class that took place in a bright orange room, and I found myself constantly attempting to escape it. Personally, any room colored orange is difficult to enter without also entering into a panic attack. Usually that is the case for bright rooms for me.

4. Public places: Imagine paying attention to a hundred conversations at the same time. For many, that might be “normal,” but for people with sensory issues, it can be a nightmare. Everything seems like a volcanic eruption. It is being pushed into unfamiliar faces, places, and everything jumbled together into one.

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In our lives together, as we ride the waves of appointments, phone calls, meltdowns, and care, I look at you — the beauty spot on your lip, the blue of your eyes. Your blond hair and the way a smile sneaks up so carefree. Your cheeks rising, and those dimples forming. Your smile is medicine to me. It is my raft.

Life can be exhausting at times. I have fears about the future. I have this need to make the world right for you. But I’d take it all, stress and tiredness a million times over, to have the privilege of being your Mummy.

Life can be unpredictable, like a storm or blizzard. But you dance in the blizzard. You shine through the clouds. You splash in the puddles and laugh.

I thought I’d have to be strong for you, but you lift me to my feet. We dance through the waves together.

The little boy who doesn’t speak with his voice but speaks with blue eyes filled with graceful strength.

I see you, my hero, for that is who you are.

Follow this journey on Nichola’s blog.

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A family with a son who has autism discovered how positively exercise affected their son and opened up a gym for those on the autism spectrum.

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