learning to navigate the world, j-bear style

Sadness

Before I get into this post, a giveaway/fundraising update: We’ve reached $1900! That’s just about enough to cover our hotel! Our goal is $3500 and we’d love to get as close as possible so our drive to and from training plus food costs might be defrayed. Thank you for those who have donated and look for the drawing for the great iPad Mini giveaway on 9/26!

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We are blessed with many days that J’s limitations do not phase us much. We have worked out routines that make our necessary tasks flow smoothly more often than not and even  have some flexibility with him. It’s been a lot of work to get there, both on his part and on ours due to our learning curve (remember, we’re not native speakers of his language!) … But then there are days and events where it all fails.

Today we attempted the New England Aquarium. Now, I love the Aquarium. I even worked there for a while, though I worked in the Simons IMAX Theatre rather than the aquarium proper. We made this journey last year and had success, so why not try it again, right?

Wrong.

Now, J loves animals. Aquatic animals, land animals, avian animals… He’s an animal guy! We talked about aquatic animals the whole way in and of course talked Octonauts, his under sea Disney Jr friends. He was excited to go inside until he actually got inside.

You see, the aquarium’s interior, where most of the exhibits are, is very dark. It facilitates better seeing into the various tanks and exhibits but when you’re a child with sensory issues, it can be unexpectedly overwhelming. The moment we entered the main exhibit areas I knew this was not going to end well.

The areas lit with natural light or close to natural light he did fine. There was a rays and sharks touch tank he actually did far better with this time than last time.* He enjoyed the large area out back where the sea lions and fur seals live. All the fur seals were out and about so he got to enjoy their antics. There were two very young ones wrestling and jumping around which was delightful to see.

That’s where the good ended. Anything to do with the bulk of the aquarium had him terrified. This wasn’t a child being fussy, this was full out fear and that is what breaks my heart. I know he loves fish and fish tanks. He loves seeing them at the pet store along with seeing the reptiles and other creatures. He would have dearly loved seeing Myrtle the sea turtle but it was not meant to be.

We barely made it 45 minutes and had to leave because he could not cope.

That breaks my heart. This place that could have been such great joy was utterly inaccessible to my son and I have no idea what I could even do about it. There were so many things I could not control tearing at him and forcing him to dive for emergency exits and scream. It’s brutal to watch your child that upset and that scared, especially over something that should be peaceful and even loved.

These are the things I get sad about: the struggles and the times where things that should be accessible aren’t, and I don’t know how to make them so.

In slightly related news: Anyone know an aquarium in the New England area that does accessible times for special needs kids? Let me know.

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*= Last time J attempted to throw himself bodily into the touch tank more than once. That ended our visit, but thankfully it was well after enjoying everything else for a while.

2 Comments

  1. Anne rossetti

    There must be a deep sense of sadness and regret when you are not able to give J a joyful experience because of the fear. I’ll not presume to try to”cheer you up” because I know a mother’s sadness cannot be “cheered up”, but I do ask you to just take a minute to reflect on all the joyful experiences you have given J. I can see from your posts that you given J any number of joyful and fun experiences. Maybe all were not as spectacular as a trip to a big aquarium, but they were fun! (the post about J meeting a new friend’s dog gave me a big smile!) I am truly sorry that you had to have your heart bruised again; I will keep praying that the joy will outweigh the sorrow. love to you.

    • Nicole

      Thank you, Anne. Your words are always so sweet and heartfelt, I enjoy your comments! I think life with J in general vastly outweighs any sad moments. They’re hard when the come but then he turns around and does something so completely him that I can’t stop laughing. He is so sweet and good natured, even if all he says is “no” sometimes, that I am honestly surprised he is mine sometimes. I hope he (and I!) might get to meet you one of these days if you wander northward!

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