learning to navigate the world, j-bear style

“Getting It”

This is a hard post that may come out with jagged edges that I don’t mean to be jagged. Please bear with me.

Many people in this world try to “get” what I am talking about or where I am coming from when I discuss J’s special needs. They think they understand and, in nearly every case, I have ever believe that they are trying with all their heart. Sometimes they get it right or close to right, other times their good intentions still lead them too far from the right place for it to be easily seen that they did mean well.

So, I write this to those of you who do try.

You don’t have to “get it”. It’s okay. The fact your trying is beautiful but, until it is part of your every day, you don’t entirely need to get it. We each have our own realities, from our personal realities to familial realities to work realities and so forth. We’re not talking other dimensions here or multiple personalities, just different ways of thinking, being and doing things.

J’s reality, and therefor a huge part of me and my family’s reality, centers around autism and sensory processing dysfunction. That’s just the way of it. 

Please realize that there is no anger in my heart against people who miss the mark on getting it. More than the getting it though, I need the compassion

Understand I cannot just go out on the drop of a dime to do things most families do. Beach trips, park trips, mall trips, attraction visits… Everything like that requires careful consideration and planning beyond the scope most people consider. I have to work on finding the right days, times, and circumstances to go and even when we do plan it cancelling at the last minute can, and sometimes does, happen. Every day with a child with autism is very different sometimes. J’s no exception.

My nights are filled, but understand I truly do wish for adult interaction. I can’t take off to do something without forethought but that doesn’t mean every evening is hopelessly filled in. Ask me if I can go do something. You might be surprised. Sometimes, it’s just being thought of that I need to hear, even if I have to say no for the 7,502nd time.

Realize that I spend most days exhausted and all of my patience is spent on J’s care and needs. I’m not ignoring you, I’m not being snappish with you… I’m just that tired. 

Understand that what other children do/eat/say is not what every child does/eats/says. Trust what I say about his needs. It’s my full time job to be a subject matter expert on all things Jacob. I know his diet, I know his quirks, I speak his language (almost fluently!). When I tell you he will only drink milk this is not a dramatic exaggeration. My son will only imbibe milk. That’s it. Nothing else. If he drinks something else, it’s a sip that is met with horror and disgust. I know this for a fact as this weekend we’ve been experiementing with clear liquids to utter failure thus far. This is not uncommon for children with autism. Please just trust me and trust my knowledge of my son. I’m not trying to be an inconvenience, I am trying to stay true to him.

I appreciate the love and support people have offered me, both since I started writing this blog and long before. I am deeply grateful for my friends who may not “get it” but they trust me enough to know me and J’s limits and respect our situation, our choices and our needs. This heat has made the days even longer (ugh) but hopefully life is on the uptick soon.

 

1 Comment

  1. anne rossetti (mary's sister)

    Your post is beautifully written, and so incredibly true.

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