Musings from an Orthodox Jewish work at home mom of twins with Autism Spectrum Disorders.

Tree Killing

The kids are home from school for two weeks for winter break.  I still have to make an income, do some housework, and do….. the paperwork.  I’m not going to say it’s been EASY, but Wilma’s new medication is… dare I say it……. WORKING!  She’s had a couple of massive, horrific temper tantrums….. but just a couple!  There are DAYS that go by with just NORMAL five year old temper tantrums (you all know the difference between a normal five year old tantrumming, and an AUTISM tantrum, right?  My landlord doesn’t— he came to get the rent tonight and he spent five minutes pontificating how his grandchildren also have temper tantrums—- tantrums don’t mean autism…. um helllloooooo.  I LOVE my landlord in every other way so I’m not going to torture him by making him read this blog— but I’m tempted.)

I digress.

Yesterday I hired a babysitter for four hours so that I could photocopy:

Wilma’s ETR x2

Fred’s ETR x2

Wilma’s IEP x2

Fred’s IEP x2

Wilma’s adhd paperwork x2

Wilma’s autism paperwork x2

Wilma’s special speech eval paperwork x2

Fred’s autism paperwork x2

 

And then stand at office max dividing it all up and stapling it all………  1 copy of each for the new developmental pediatrician.  Do we NEED a developmental pediatrician?  No….. we have two neurologists, a psychiatrist (same one for both twins now— THAT’S new!), a therapist, an outreach worker from the behavior center, an outreach worker from the county board of developmental disabilities, an outreach worker from the autism center… and a partridge in a pear tree.  It takes a village, right?  However….. we HATEEEEEEEEEEEEE our required weekly behavior therapy.  All three psychiatrists we’ve tried thus far have required weekly therapy.  The ONLY weekly therapy covered by the twins’ insurance within a half hour of our home is at a behavior center that we’ve grown to dislike VERY much.  And we’re there at LEAST once a week.  We have the outreach worker there, the therapist there, and the psychiatrist there.  Soooooooo at my last meeting with the outreach worker from the autism center, I told her how we’re STUCK at the behavior center which shall remain nameless.  She called a developmental pediatrician to ask her if she’d consider doing our med management (and not require this weekly therapy…..).  We have our first meeting with her on the twenty first.  I HOPE this works out so our Wednesday afternoons could be easier!

1 copy of each for the SSI lawyer.  We tried applying for SSI for one twin and got denied.  I got frustrated and gave up.  But ASIDE from the work I put into my businesses and the work I put into laundry/ bill paying/ cleaning (ok not that much work ha ha)/ cooking…… I put AT LEAST fifteen hours a week into emails, phone calls, paperwork, meetings, and research about these kiddos.  Dammit we need the money.  PAY me for all this damn work.  So we’re re-applying.  With a lawyer.  Wish us luck.

 

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