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

Archive for the ‘SSI’ Category

Dayenu

In Judaism we have a special song we sing at Passover time— if God had given us just this it would have been have been enough.  If he had given us this but not that it would have been enough.  Sometimes when I vent I turn it around.

I’m a bit discouraged this week and just need to throw up my hands and say Dayenu.

If I had twins, Dayenu.

If I had special needs twins, Dayenu.

If I had to work because we can’t survive on hubby’s income alone, Dayenu.

If I had to work evenings because daytime is chewed up by paperwork and meetings, Dayenu.

If I had to do laundry, clean, cook, pay bills, Dayenu.

If I had to go to IEP meetings, ETR meetings, FBA meetings, Dayenu.

If I had to balance the schedules of the outreach worker from the autism center, the outreach worker from the behavior center, the outreach worker from the board of developmental disabilities, Dayenu.

If I had to balance the schedules of the neurologists, psychiatrist, behavior therapist, speech therapist, developmental pediatrician, Dayenu.  (we’re not currently doing OT or PT outside of school hours— they’re six years old and don’t get home till after 4:00 for pete’s sake—- there are only four days a week we can cram after school therapies!)

If I applied for SSI and got denied, Dayenu.  If I re-applied with a lawyer and am killing lots of trees in prep for a second denial and subsequent appeal and court date, Dayenu.

If I HATE the behavior center and am required by three different psychiatrists to take my kids there so I fill out an hour’s worth of paperwork for a new developmental pediatrician so that we can quit the behavior center therapist, outreach worker, and psychiatrist and the new developmental ped can handle our med management, Dayenu.

If I had a daughter who poops herself five or six times most days after school on purpose and NEVER uses a toilet at age six, Dayenu.

If said daughter has a GI doc who claims she’s constipated and is giving her miralax and metamucil protocol each day, Dayenu.

If I have to play the medication roulette game between clonidine, tenex, abilify, focalin, vyvanse for two different children with three different psychiatrists and a developmental pediatrician, Dayenu.

If I have to survive double autism meltdowns in public complete with biting, screaming, flopping and refusing to move, stares from strangers, and unsolicited parenting advice, Dayenu.

If I have to have the school district tell me that they don’t need ABA (and insurance won’t pay for it either), Dayenu.

If I have to have the school district tell me that they’re too high functioning to be sent by the district to an autism school and they can handle them at a regular public school, Dayenu.

If I’d rather send them to a Jewish day school but know that I can’t possibly give up the services we’re getting at public school and have to figure out how to get Judaism into them outside of school hours, Dayenu.

If I, in an effort to save money, want to bring a VERY high rent payment down to a reasonable mortgage payment and am thinking about purchasing our first home at age 39, Dayenu.

If to purchase said home, we need down payment assistance and to qualify to receive the downpayment assistance I have to take a course which requires me to cancel the twins’ after school appointments for an entire week and find an after school babysitter, Dayenu.

If I have to prepare for Purim, Dayenu.

If I have to prepare for Passover, Dayenu.

But put all of them together and you have one very tired work at home mommy.

Vent over.

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.

 

What the heck I’m talking about

People are requesting definitions of the alphabet soup, so here goes…

 

IS= Intervention specialist.  Each of my kids has one in their public schools.

ISA= Intervention specialist aide.  Each of my kids has one of these too.  Wilma never puts her poops in the toilet- EVER, so her ISA gets the fun job of taking poopy underpants off an almost 6 year old.  Fred DOES put his poops in the toilet FINALLY but doesn’t yet wipe himself so his ISA wipes his butt.  🙂

MFE/ ETR=  Multi factored evaluation/ Education Team Report.  The MFE is once every 2-3 years.  We just had our second one so the twins could transfer from preschool to “school age”.  It’s MANY MANY observations and pages and signatures.  And an IQ test too.  ETR= the report leading from the MFE which brings us to the qualification for the IEP.

IEP= Individualized Education Program.  My kids don’t go to school without one and the benefit of public school is that their schools are mandated to follow it.  I sit in the meetings crafting it and it includes gross motor, behavioral, toileting, etc etc goals.  For instance this year a goal for Wilma is that she must learn to write her name.  A goal for Fred is that he must take turns with a typically developing peer using a central material (car, windup toy) by asking if the person is ready for the object and waiting for a response and asking for the person to pass the object.  etc etc etc.  Each goal has subgoals and progress reports relating specifically to the goals, etc.  I begged for potty training goals.  The goals aren’t well written, but they’re in there.
HFA/LFA= High Functioning Autism, Low Functioning Autism.  Most consider both my twins to be HFA, but dang if I don’t have an almost 6 year old who’s never put a poop in the toilet and another almost 6 year old who refuses to talk to a peer— he’ll either ignore or bite.  But they’re verbal.  And toilet training.  So they’re HFA enough NOT to qualify for SSI or waivers or extra respite funding, but LFA enough not to be able to attend any school they want (I would LOVE to put them in a Jewish day school, but we’re just not ready).

SSI= Supplemental Security Income.  We applied and got denied.  At some point I’ll hire a lawyer and try again, but I’m a bit busy TRYING to make enough money that we can BREATHE.  God forbid we ever want to buy a house or take a vacation— no, I just don’t want to live in a cardboard box!

ABA= Applied Behavior Analysis.  something our kids’ insurance won’t cover and their school district doesn’t feel they need.  But our local autism center demands they get 20 hours a week of it and it’s the most expensive therapy you can find.

There’s plenty more but that’s it for now!

 

Two Week Winter Break

I was busy obsessing over thinking about the fact that my kids will have a two week break.  This Friday will be their last day of school until January 10th.  I physically and mentally CANNOT take them by myself most places (we have a system down pat for walmart and target— my kids LOVE CARTS).  The library?  Nope.  Playground?  Nope.  Restaurants?  SOMETIMES but I’d better be prepared for a mini meltdown.  (If you’ve ever seen us at the library or the playground, you’ve seen a MEGA meltdown.  A restaurant is usually a mini meltdown which is the worst meltdown ever for a neurotypical kid— for my kids, it’s a regular day.)  So I CAN take them to restaurants, though I don’t love it.

My husband has to work.  I have to work too, but hey, as long as I can make a full time income after the kiddos go to bed, then my daytime has to be the autism battle zone.  Forget the laundry and the cooking.

SSI denied us so we don’t have play money to get respite.  Respite denied us “extra” funds even though in the board of developmental disabilities paperwork are all the reports from our early childhood intervention specialist stating that taking them places by myself is my biggest problem.  I have ZERO issues taking either kid with me anywhere— yes, there are meltdowns, but no safety issues and nobody except me gets bitten— I use my strategies and I can get out the door without anyone getting hurt.  But put me with both kids and as soon as Wilma decides to flop and refuse to move, Fred turns into a tazmanian devil and bites anyone near him—- I don’t have enough hands to keep Wilma from deciding to run off while I pry Fred off an unsuspecting library patron.  I need both of my hands on both children at that moment.  I’m actually the only person I know who took a rep from the board of developmental disabilities to the playground with me, and Fred’s special ed teacher to the library with me— SO THAT we could come up with strategies SO THAT eventually I can go places without hiring a babysitter for one or both of my children.

Other families during winter break travel or go to museums or special events or parties.  Yeah, we’ll be home.  Want to come over for a play date?

This post sums it up SO nicely— THIS is why you don’t see me and my children out and about so often.

I Promise Not To Take a A Walk Again….

…. with my children…. without help.

It was an innocent thought.  Three days in a row of no television, ipad, computer, telephone, or car…..  there are only so many hours we can play with the same books and toys, right?  So let’s take a walk!

For the past many years I’ve always done it whenever there’s been a Shabbos (Sabbath) or Yom Tov (Jewish holiday) with nice weather.  For a one day span, Shabbos, we’re able to stay home without too much trouble— if we get invited out for a lunch meal, my husband comes home to help get the kids to where we’re going.  But for three days in a row— this year two days of Rosh HaShanah backed up into Shabbos and soon two days of Sukkos will back up into Shabbos and then Shimini Atzeres/ Simchas Torah will back up into Shabbos…… picture an autistic kid with no access to an ipad or a computer game or anything with buttons for one day (or playdoh, or crayons)— now multiply it by three days— now multiply it by two children— we need a walk!

I had already crossed library, playground, and a bunch of other fun places off the list I can physically take my children by myself without someone getting bitten, kicked, hit, or tackled.  But I was still willing, until yesterday, to pile them into the double stroller (which really doesn’t fit my almost 5 year olds) and walk on.  Go without the stroller?  No, I know better than that.  Wilma flops down on the sidewalk five streets from home and refuses to get up.  That causes Fred to step on her, scream, and bite her.  So…. yes, they’re able to walk for a bit as long as I have the stroller with me.  As soon as she melts the teeniest bit, I pick her up, put her in the stroller, and walk on.  Until yesterday.  The kids have outsmarted me.  I can no longer physically put her in the stroller and lock her into the seatbelt with one hand while keeping him from biting her with the other hand.  Because the stroller really doesn’t fit, it takes both my hands and a ton of strength to slam her into the seat and get the seatbelt on her (with no seatbelt, she melts face down to the sidewalk screaming– she WILL. NOT. WALK.  when she’s in meltdown mode).   I can do that when I’m alone with her.  But while he is in multi-bite mode (which is ONLY caused lately by her meltdowns), I literally don’t have enough hands.

So picture us a few streets from home in the middle of a lovely walk where I’ve just told Wilma, no she may NOT go into the synagogue.  Meltdown.  (they behave BEAUTIFULLY until they don’t and I can’t predict how quickly or intensely it’s coming).  I calmly wait it out while she is facedown on the sidewalk and I’ve locked him into the stroller to prevent him from biting her.  So far so good.  Until she doesn’t get up.  And keeps screaming.  And bothering people in nearby homes.  And the synagogue.  And neighboring synagogues.  And neighboring countries.  So I attempt to lift her into the stroller.  I can’t do it because he turns around to bite her.  If I take him out of the stroller, he’ll run into the street.  So I hold her for a minute, try to talk him down and try again.  And again.  The more I try to shovel her 45 pound limp screaming body into the stroller, the more he tries to bite her.

By now, here comes everyone.  The old men at the synagogue door opening the door every 30 seconds to stare at me.  That’s truly helpful.  The lady who comes by to tell me “you can’t handle those two by yourself— you need help!”.  I said “thank you for reminding me of that”.    We were offered candy approximately fifteen times.  Sure— my kids are in the middle of a massive meltdown– you think my parenting style should be to reward it with candy?  So with one hand I’m locking Wilma into her seat— with the other hand I’m trying to keep Fred from biting a friend of mine who thankfully came along and WAS a big help.  With the third hand I’m thanking but waving away all the candy offers.  Once both kids were in seatbelts I TRIED to move the stroller.  I couldn’t.  Wilma’s feet were firmly planted on the ground.  She was standing up while in her five point harness.  I tried to move her feet— Fred bit her again (some of the bite marks on her neck and back are minor and some are all sorts of fun colors).  At this point my friend sent a boy into the men’s section at the synagogue to grab my husband, and I, defeated and relieved, burst into tears.  Enough, I had it.  He was strong enough to keep the stroller moving depsite her feet and his teeth and while the stroller was moving they both calmed down.  He dumped them in the house, went back to synagogue and I could say at least I TRIED to spend time with my kids alone without a car outside the house.  Never again.  For Yom Kippur I’m getting a babysitter to help me take them for a walk in two separate strollers— or if I don’t buy another single stroller by then, to help me walk the one who’s willing to walk, far away from the one who’s being pushed.   My friends who have six, seven, eight or nine neurotypical kids don’t hire babysitters.  Me, I’ve got two kids and I can’t leave the house without a helper.  It’s not fair.

To make this week even better, I finally got the official paperwork denying SSI.  I knew we weren’t going to get it— we don’t get anything— we “make too much money” for free health insurance or WIC or food stamps or anything like that that everyone knows we’re having financial trouble because I don’t have enough time to work many hours keeps telling us to apply for (great sentence but I don’t care– it’s my blog and I can be grammatically incorrect if I wanna)…….   but I was kind of hoping that we had a shot at SSI.  Nope—- THOSE hours of paperwork are now wasted and I’m back to turning my whole life upside down for kids who aren’t potty trained, aren’t in school a full day, need lots of individualized appointments and therapies, AND I don’t have time to work enough hours to provide what we need because their school hours overlap for eight hours a week.

In short, if you see me,

don’t tell me to apply for WIC, food stamps, medicaid, or SSI.  I did and was denied.  Didn’t even WANT to apply, but did anyway.

The Ten Commandments, In SVG

Image via Wikipedia

don’t tell me I need more help.  I KNOW THAT.

don’t tell me I need a vacation.  I know that too.  Got a qualified babysitter and some money for me?  Now we’re talking.

don’t offer us candy.  EVER.  If my kids deserve candy once in a blue moon, I’ll be the one to decide when and it WON’T be mid meltdown.

don’t tell me that since I can’t handle my kids I should send one to an institution.  I’m doing the best I can.

 

And I’ll never take a walk with them alone again.  ok?

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