The Special Needs Ultra Marathon

Being a parent can feel like running a marathon*. It is long, it can be challenging, but most people can do it if you work at it,  and it does have an end (hopefully!?) … when your kids move out and get on with their own lives.

Being a parent of an autistic child can feel like running an ultra-marathon. It is really, really long. It is hard even to imagine that you’ll make it to the end. The milestones are distant and unclear.

But you know you’ve got to do it.

One step at a time.

Progress-ish

Denial of coverage appeal filed via fax. I’ll call later today to confirm that they’ve received it. Should here pretty quickly (3 days, perhaps?).

Heard back from the state folks yesterday. Much faster than expected (less than 1 week instead of 3 weeks). Did their phone screen. Next step, get assigned a caseworker and meet with them within 3 weeks. Next milestone set.

Our son turns 3 at the end of the month. He seems to be progressing and growing… it is so frustrating not being able to hit the treatment ground running.

Remember:

  • Line up resources.
  • Build that team.
  • Get through the “system”.

… my wife and I are doing some basic behavior and speech “stuff”… but we want to do more! MORE! MORE!!!

Pheidippides who?

* FUN FACT: The original marathon was not just the 26 miles run from the site of the battle at Marathon to Athens, but 150 miles from Marathon to Athens, on to Sparta, and then back to Athens (in 2 days), then to the site of the battle and back (where he died). Longer by a good shot than even a modern ultra-marathon.

** FUNNER FACT: When the runner got to Sparta to ask for help fighting the Persians, he was told “Sorry, can’t help you until there is a full moon”.

*** FUNNEST FACT: So, the length of the run is mis-remembered, the lack of help is neglected, and the race is not named for the guy who ran this amazing distance, or the fact that basically, no one helped him.

**** FYI: OK, fact is pushing it (most of this is myth and legend). But the runner was named Pheidippides.

Sounds like an autism parent kind of guy.

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