SSI, Speech, and Max's New Mattress

  Max receives Supplemental Security Income.  It is considered a welfare benefit, to be used for his support.
   MyGuy and i together are his legal guardians, but
only one of us can be the SSI payee.  So, while we actually do this together, my name is on the account.  i shop, i have time.  One of us has the income, one of us, we find, needs to be available.  He runs the numbers for me, kinda my accountant.  We consult about decisions.

 

Speech Therapy

  There's rent which we collect and we try to do our best about using the rest of it.  Mostly the rent allows us to afford the private speech therapy, one hour a week, at $100/per, which he should have been having since he was diagnosed at age 3.
  Yes, he's been having speech at school since age 3, at the rate of roughly 20min/2x/wk.  It is nowhere near enough to make a difference with his needs, especially with the fact that he's had over a dozen speech therapists in that timeframe, most of which have made no effort to communicate with us, his parents.
  (For comparison, Boom, who was in the GATE program throughout school,  had articulation difficulties for awhile.  He was getting 20 min of speech THREE times a week, because it was thought that was enough that, if he applied himself, it would actually make his problem disappear.)

 

Back to the $$$

  Anyway, we need to account for these funds, actually a just thing, to avoid fraud.  But there are things that seem valid that we cannot use the money for.

 

Home & Auto Repairs

   It's our home.  It belongs to MyGuy and me, not to Max.  So, even though that benefits Max, even though we're talking things like the living area not the garage roof, and fixing things that he most likely originally broke, no go.
  Ok, fair enough.

 

Family Trips

  So if you've been paying attention, you've noticed i've talked about a trip to Hawaii that me & MyGuy took.  That was back in 2008.  And a couple of weeks ago, we went, again just the 2 of us, to Michigan.  Earlier this summer, my sister & i went to Michigan also. (And there's a certain amount of evidence that the respite therapy is good for the family unit.)

Valerie, Paris gardens,1976

  Max thinks he likes to travel.  He says he wants to go to London and Paris.  And actually when we went to the Poconos during fall break in 2002, he handled flying rather well.

We flew both to & from the Poconos.

  (Not so much other aspects of the trip though.)

We thought the Lost River Caverns would be a nice place to visit on a rainy day.  Who knew Max would be frustrated following the rules and not climbing the tempting walls?

  We were able to go to Hawaii because my aunt left us a legacy specifying such a trip.

Honu at Punalu'u Black Sand Beach

 We could go to the Poconos because my sister let us use her timeshare that year.

The Poconos condo we stayed in, October 2002

  And i don't know that Max REALLY likes to travel.  He is much too fond of being at home every night.  He doesn't like seeing sights.  He can do the World's Largest Children's Museum  (or the art museum, or. . . .) in twenty minutes.  Going to the zoo is just a stressful race to the train.

 

Stress & Conversation

  And when he gets stressed, i'm not myself, definitely not relaxed.  i did not enjoy that Poconos trip, on edge the entire time.
  Even our annual Thomas pilgrimage makes me a wreck.  Yes, he does much better than when he was 10, the hardest year to get through, but we're all on edge.  i've learned to relax more, because he picks up edginess from me, but still work.  i feel like i'm end-running him, thinking ahead to figure out what stressors might be coming up.
  Because he needs his conversation partners to guess what he wants to say.  Not so much as a year or two ago (yay speech therapy!), but still quite a lot.

 

Mattress

  So what can we do with the SSI money?  It's tight, but we could feed & house him without.  We've been giving him speech therapy twice a week, but i think we'll have to stop the second session soon.  (They gave us a windfall, kinda, because we didn't report the rent payments as soon as we should have.  So there was extra, with accompanying rules about how & when to spend.  It has to disappear by a certain time, or else we'd just continue the speech longer.)
  (Did i mention that he could've benefitted from private speech therapy since he was diagnosed?)
  Was a new mattress the best use?
  Well, i think Max could've benefitted more from work to the downstairs bathroom, but that's not allowed (and it has to be spent too soon for that much more speech.  You pay for services when you get them, not months in advance.) 
  So the mattress is a valid, allowable expense.  It's a modest but good mattress, serviceable for at least the recommended 8 years.