A snapshot from Ben….

 

As parents, there comes a time where you send your kids to the hands of someone else and hope they take care of and live your kid as much as you. I’ve been through this three times, but there is a fear that some may not be as patient as what may be needed. There are times where Ben may have a meltdown, or be perceived as difficult and the thought that I’m not there to “fix it” hurts me to my core.

Today he apparently had a hard day. As he exited the bus with puffy eyes and visible signs he had been upset, I wished in that moment I could help others see Ben, from a different perspective.

What would Ben say? What do we need them to know? So much….. but if I had to sum it up in a little letter….

Hi! I’m Ben. But, sometimes I ask to be called Mario, because he is my favorite thing right now. I wanted to make sure you know a little bit about me. My mommy says I’m a very special boy.

You see, as a baby growing up, I was just a little bit slow to hit some milestones. Things like making eye contact, really engaging with my mommy and daddy, cooing, talking. My mom and dad had a terrible time with me always being fussy and irritable. Once I got a little bit older, my mom and dad noticed I would lay on a blanket or sit in the den and just play with toys, all by myself without a care in the world. Sometimes for hours, I’d stay alone. I never needed or wanted anyone to play with me, talk to me – I was perfectly fine in my own little world. My parents just thought they’d finally “hit the jackpot” with the third kid being easy – they didn’t know at that time, they’d hit the jackpot with me – but for very different reasons!

Then, I started preschool. I was expected to be in a room with 15 other very loud kids. I began to scream, very loud, cry, shut down. Often times, my mom had to leave her full time job, to pick me up from school. Or, when my parents picked me up, I would have spent my school hours walking the halls with the director. The teachers, they were so kind and tried to be understanding, but they told my mom they weren’t equipped to “handle kids like me”. Luckily, they worked with my parents long enough for them to find an alternative placement for me in a big-boy special school! In the same class with my big brother as my mentor.

There are many, many things you don’t see, that my family does. There are things you don’t see – that I feel. I’m not the best at explaining or expressing myself.

I have something called Autism. Even my mom and dad don’t really understand it. Sometimes, they lose their patience when I have a meltdown, when I don’t eat, when I don’t sleep. They’ve learned some things that help me. I think maybe you would like to know them too.

I like things in perfect order. I tend to be a creature of habit. Everything has to go a certain way. Things need to be in the place where I think they should be. If they aren’t – this tends to overstimulate me, and fill me with anxiety. Sometimes, I don’t know how to communicate – when I’m that upset, so it just comes out in a scream. It is hard to calm down. I want to – I don’t like being upset. I know that some people thing giving in is just “catering to my fit” – but it isn’t. It allows me the opportunity to settle down, then, we can maybe talk. Even if I don’t look at you, I’m listening. So, if I start to have a meltdown or scream because something isn’t a certain way, ask me to use my words, drop on my level and help me solve the problem. Telling me no or to wait aren’t good words to use. Use words like “Ben, use your words, how can I help you, what would you like”. Sometimes that give me the chance to think things through and calm down.

I also don’t like to be dirty at all. Sometimes, even if water gets on my shirt or pants, it triggers a meltdown. I am working on this in therapy – and it is getting better, but this is a really big challenge for me. If my clothes aren’t a certain way, maybe a little wet, or you ask me to take off my jacket or shoes – I will have a meltdown. Maybe not every time, if I’m distracted, so just ease me into it. If at all possible, just change my clothes. This will calm me down. Don’t tell me “it’s okay” because to me, it’s not okay. What you can say are things like “we can wash that shirt”, “let’s wash your hands”, or “oh boy, let’s get a napkin to dry you off”.

I don’t sleep very well. Sometimes at night, I have to tell my mommy and daddy that things hurt me. I don’t know how to communicate what I’m really feeling, so my mom and dad do the best they can to give me anything that may make me feel better. Nights are long, and unfortunately if I don’t sleep well, this may too, trigger me to have a really rough day.

Something special about me too – is I view the world in a different way than you do, I think? Sometimes, I just want to touch people, touch faces, touch hair, make sounds. I don’t always understand people’s looks or understand that maybe I’m making people mad or disturbing them. Now, mommy says, sometimes I can just act like a “terd” – but a lot of times, I just need you to explain to me that something may not be kind or better yet, distract me! I love looking at new things or feeling other things, and smells – I LOVE to smell things!

Oh, another thing, my mommy thinks it is super important that you know – I need to be kept safe. Sometimes I don’t think about safety. It really doesn’t register in my head. If you are ever driving me somewhere or taking me somewhere, please keep a close eye on me! I wonder off a lot, sometimes I run in the road. Also, water – I LOVE water. I don’t know how to swim yet, but my mommy is going to put me in special swim classes to help keep me safe. My mom is super paranoid that I will get hurt or lost.

I know that it may be hard to see that I have Autism, because a lot of times, I seem like a smart happy boy. Guess what? I AM A SMART HAPPY BOY!! But, smart and happy boys CAN have Autism too! Please be patient with me. Please know that sometimes, you may not want to focus on the outburst or the behavior – but maybe you’d want to look at WHY or what led up to that. It may help you understand me a little better.

And, give a little grace to my mom and dad. They fight battles for me every day that you’ll more than likely never see or understand. They want me to succeed and be the best Ben I can be. They love me passionately, because I AM AMAZING. Always ask them if you have any questions, they love to help others – help me!!

 

204 comments

  1. Pat Rasbeary says:

    Beautifully written, little Ben. You are amazing and you are now and will be a wonderful young man as you grow older.
    Stay strong and continue to love the Lord.

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