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    • #19812

      Hello all! (FYI -The last time I posted the formatting came up all wonky, hope it doesn’t happen again, I couldn’t fix it).

      I’m labeled as “clinically probable” ALS right now, going to a multidisciplinary ALS clinic next week for 2-day exhaustive testing to confirm.

      I’ve not been doing well, it’s obvious I’ve been ill, and am on 24 hour oxygen. I have 3 kids, but it’s my 21 year old autistic, intellectually disabled son I’m most concerned about. I know he has no idea what’s happening to mom, but he’s not “stupid,” he knows something is wrong and I must find a way to help him understand.

      Typically with autistic kids you use something called “social stories” to help explain things that are happening that they might not understand. I could also use short, simple books meant for children that could help. However all I’m finding are books to help children understand when a parent is going through cancer – which is obviously not the case here.

      I really really could use some help finding resources to use to help my son explain what’s happening, what to expect down the line, etc. Even if they’re not specifically ALS related (but that would be perfect), just something to help explain how mom (a parent) is terminally or seriously ill in a way he can understand (he’s at an approximately elementary school level as far as intellectual understanding).

      If anyone can help me with this, I would be SO grateful. Thank you!

    • #19814

      Your experience is a big step to the answer you are looking for. I think I would check with the social worker in your team, then I would contact your local ALS Association and see if they could suggest any further help. Is there a similar organization like the ALS Assn for Autism? I know this is not a lot of help, but maybe some directions that could help.

      • #19815

        That’s a great idea about asking the social worker! Also after I posted this I texted his teacher he has during the school year (he’s in a school district program for post-high school young adults with developmental disabilities, life skills and such, it’s amazing), and I asked her for some help gathering resources to help him “process” what is happening – she responded immediately and said she’d get some things together, so that’s good!

        Thank you for responding and for your ideas, good stuff!

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