• Kelly

Our Autism Story – Day 9 – “Spreading Autism Awareness Loudly”

Many parents know there are challenges taking kids out in public. Everyone has witnessed a child (or even adult/parent) having a tantrum or causing a scene in public. Brahm has had more meltdowns (more on these later) in public than we can remember – however some are engrained in our memories forever – Autism caregiver PTSD is real!


Every time we take Brahm out into a public setting, family gathering, or a new place, we are constantly walking on eggshells. Any number of issues could trigger a meltdown: crowd size, sounds, smells, lights, change in routine, etc. When we take Brahm out of the house we normally have to limit the amount of time we spend at any given space – we typically last anywhere from 5-60 minutes and after that, it’s game over. We know at a certain point, Brahm becomes over stimulated and a meltdown will ensue. Many times we need to physically remove Brahm (sometimes unwilling, kicking, screaming, and injuring / destroying any and everything around him) from a place or situation to calm him down.


In a perfect world, we would not let meltdowns hinder our family’s ability to go places. But, honestly it does. There are certain places we intentionally avoid or have to severely limit our time at (e.g., arcades, live sports, bowling allies, crowded events, etc.). We have walked into restaurants and had to immediately turn around and walk out because we know there is no way we’ll even make it to the table without a meltdown.


So, why do we even try to go out in public? We do it for a lot of reasons. We want to make sure our daughter Helena (yes, we have TWO kids!) gets to experience as much “normalcy” as possible. We want Brahm to have new experiences and do things his peers are doing – even if we have to push him and us. Autism can be incredibly isolating, and we (Nick and Kelly) sometimes just need to feel normal and go out in public. And in an strange way, we feel somewhat obligated to show the world what an autism family is like – remember “1 in 68” kids are diagnosed with autism – there are so many families like ours that should be able to go out in public!


Please know that we sometimes have to say “no” to invitations, and it isn’t because we do not want to go. It’s the exact opposite – we DO want to go, but it’s either a situation we know Brahm will not be able to handle or it’s a situation where we can’t handle the energy and stress of constantly being on top of Brahm and trying to prevent the ticking time bomb from exploding. But, please don’t stop inviting us – we really want to be included!


P.S. – One of things that can make a world of difference for Brahm is if there is a designated “quiet space”. This can be somewhere there isn’t a lot of sound and there are no other people. Spare bedrooms, empty hallways, basements, or outside spaces are great. It gives Brahm a place to take a break and then hopefully come back to the party or event for a little while longer.


P.P.S. – You may have heard us rave about our vacation to DollyWood last summer. One of the reasons it was such a success is because of the autism accommodations that are provided. For example, when we went to the DollyWood water park, we were immediately greeted by a “special” employee. She took us on a tour of the entire park, pointing out things Brahm would like and “escape plans” for us, and concluded by providing us access to a private, quiet, outdoor sensory room where Brahm could take breaks any time he needed to. We can’t say enough good things and are hoping to go back next summer. And, it didn’t hurt that Brahm fell in love with Miss Dolly Parton!



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