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

Archive for the ‘Paperwork’ Category

Hurry Up and Wait… No More

Now that Wilma’s medications are under control and her behaviors are starting to improve, and many times we can go places and trust that she won’t throw shoes at strangers’ heads, we can finally begin intensive behavioral therapy. After years of insurance won’t cover it and the school district doesn’t provide it, we sat on waiver wait lists. After getting approved for SELF waiver we waited some more. Our enroll date is Jan 29th. FINALLLLLY this coming Tuesday, April 8, we will begin services— part of the FBA that will lead to ABA. Do a dance of joy with me. Will ABA be the magic bullet? Maybe not. But to be able to access it and try it before shrugging it off as “well, she’s high functioning, so it’s probably not for her” is a blessing. Now to get Fred off the wait list. When I called and asked why she was approved first I was told it was because he “ONLY” has autism. ONLY. HAH. She’s got autism, adhd, ODD, megacolon, encopresis….. and a partridge in a pear treeeeee. At the moment, his behaviors are more severe than hers. But SHE’LL get the intensive therapy.

ABA is what I THOUGHT would be part of Fred’s autism classroom in preschool. Though I LOVED that class for him, it wasn’t ABA. Some kids get ABA tutors in public schools— but I’ve been too happy with the district to fight them. For what they DO provide, they do an awesome job and really love and know our kids. ETR/IEP meetings are a breeze. But I’ve been wanting to try ABA and had no way to do so. Until now.

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.

 

oh by the way…..

Oh I forgot to tell you all the upshot of Wilma’s IEP meeting and follow up conversations……. she’s not in a special ed class.  She’s no longer REALLY in the mainstream classroom.  She’s not sent off to an autism school.  They’re bending over backwards to create a schedule for her based on her needs.  The resource room and the intervention specialist (who works with first and second graders also) is her home base.  As behavior permits, she is brought into the mainstream classroom with an aide for 50% to 85% of every day.  She gets a LOT of individual attention (some of it from the occupational therapist which is interesting because I had been toying with the idea of begging for more OT…… hey!) and over the past few weeks since this new program has been initiated, her behavior at school has gotten MUCH MUCH better.  She earns the right to go be with the group and see her friends…. and the bulk of her academic work is done in very small groups without the overwhelming atmosphere.  Before she was being removed from the group when she was disruptive.  NOW she works well one on one or in small groups and then GETS to re-enter the classroom for part of each day.  She does all specials (art, gym, music, library, lunch, snack) with her class.  Rest time she does in the resource room because everyone else was resting and she was up at the computer reading over the teacher’s shoulder (poor teacher was constantly emailing me!).

Additionally I won the FBA argument.  I have a meeting on January 10th to sign the paperwork to get an FBA in place for her.  SO WHAT if her behavior has improved over the past few weeks.  LONG TERM, it’s gotten much worse from preschool to kindergarten.  I need a paper trail NOW to show that we’re doing all we can to keep her mainstreamed because things are only going to get harder once the first, second, third grade bullying starts.  Thankfully, there has been NO kindergarten bullying (yet?!).

Here comes winter break.  Two weeks of not being able to travel with them, not being able to take them anywhere by myself, not being able to move a load of laundry without Fred biting Wilma as soon as she ticks him off.  I’ve changed my meds.  I’ve changed Wilma’s meds.  I’m armed with lots of books, toys and games.  Let the fun begin.

Mommy can’t get sick

Last week I had my fourth episode of a chronic health problem I’ve had since 2001.  The episodes can last from one to four weeks and scare the bejeepers out of me because losing complete control of how my body feels is terrifying at ANY time… but the last two episodes have happened while I’ve been a mother.  Nightmares about being admitted to the hospital for medication management and further testing have been the bright spot of this past week.  Thankfully, I was scheduled to have a doctor appointment yesterday before Shabbos for another health issue (super high blood pressure—- I’ve already BEEN on blood pressure meds for years now) so I simply came in showing all the classic symptoms (of the chronic health problem that I’m not sure I wish to share here) and begged for help.  With a few tweaks of my medications (I’m now on four meds), I felt normal last night for the first time in WEEKS.  I am SUPER lucky that the med change worked and that I’m now on the upswing.  The silver lining is that I lost some weight (from a lot of vomiting and no appetite), and that my pharmacist, when I explained what I had been going through, gave me a major discount on meds (no, of course we don’t have health insurance) and a big hug.

Stress doesn’t help my health at all, and to be perfectly honest, these kids are the light of my life— and a cause of a SUPER amount of stress.  I spend more time filling out paperwork/calling/meeting with people from the board of developmental disabilities, our local autism center, our local behavioral center, IEP meetings….. than I do with my income producing WORK.  I gave SERIOUS thought this week to giving up on one or the other.  If I give up on all the stuff I’m doing for the kids— I cancel the outreach from the board of dd…. I cancel the outreach, psych, and therapy from the behavior center…. I cancel the outreach from the autism center…….. and I just simply let public school do with them what they do and not run to therapies every day after school…… I’ll have more time to work.  OR…. if I stop working completely and just focus on being a stay at home mom….. well that’s out of the question because my husband makes about a third of what we need to make just to be middle class— he loves his job, but is horrifically underpaid.  There are no easy answers but I’ll just keep muddling along doing what I can and always knowing it’s not good enough.

Meanwhile we had a med change for Wilma this week.  AGAIN.  She is now on Vyvanse instead of Focalin.  And the abilify has been upped again.  By golly, we might be starting to see changes!  Then again she had a half hour meltdown today after cheating at Chutes and Ladders (who CHEATS at Chutes and Ladders?  I calmly said she needed to move to where she was supposed to or I’d put the game away—- so I started to put the game away and well….. my husband didn’t get his Shabbos nap).  But this was the ONLY meltdown in the past 3 days.  SERIOUSLY!  PRAYING that med changes for Wilma and myself are helping us turn a corner.

IEPs are done!

We did IEPs on Monday!  I was in and out in two hours for both kids (since I had already had a three hour PRE IEP meeting).  Five goals with subgoals for Wilma, Three goals with subgoals for Fred, enough OT, PT, and speech to satisfy me but not so much that switching them to the therapy center is out of the question (I just love their school so darn much though…..).  I’m satisfied.

Potty training goals for both twins.

Kindergarten placement?  To be decided at the end of February when ETR results are back.  ETR testing started this week.  PLEASEEEEEEE  let there be the right program for both of them at ONE school with similar hours this next year.  PLEASE.

But here’s a funny poem because this nice Jewish family loves Xmas poems.  — about the IEP process—- for most fellow autism moms, it will garner some chuckles!

 

We Have a New Dentist

I have a happy post.

Our dentist whom we LOVE can’t handle my kids anymore.  He doesn’t offer sedation for children.  At all.  Take my two autistic four year olds, put them in his small office with no laughing gas, and the whole building is in for a rude awakening.  My husband and I will still go to him- he’s wonderful.  But my kids need to be knocked over the head with a frying pan sedation.

So I called every dental office listed in our local autism directory— most of them DO have experience with patients with autism, but put them all completely under in a surgical atmosphere.  My kids don’t have cavities or dental issues— they just need cleanings— a little sedation is fine, thanks.

This was a disaster waiting to happen…..

1)  I couldn’t get the twins their cleanings right away— they needed us to have a first appointment (consult) first so I have to take them AND take them back…..

2)  It’s in a ridiculous campus of buildings — had I not studied the campus map on the internet I would have been ridiculously lost.

3)  Parking is a nightmare– not for normal people, but for a mom with two behaviorally challenged four year olds?  ugh.

4)  I don’t have a double stroller big enough for these people that fits in my car.  These people were going to HAVE to walk.  Or at least one of them— I brought a single stroller with me.

5)  It’s the dentist.  Nuff said.

 

But……. dance with joy with me please.

1)  I found the building without driving around and around and around.

2)  Valet parking, usually reserved for labor and delivery patients, agreed to valet my car.  Worth every penny.

3)  Both kids eagerly walked to the bathroom where Wilma and I went potty and Fred got a diaper change and then eagerly walked with me to the office.

4)  While I filled out 15 minutes worth of paperwork (no joke), both kids quietly and happily watched Spongebob on the tv.  Totally amazing in and of itself.

5)  When we walked back and Fred screamed “oh no!”  he got over it very quickly and walked to a corner and pooped.  If he’s comfy enough in the office to poop immediately, it’s a good sign.

6)  They patiently made it through the teeth counting and poking around and all my questions.  A Bit of screaming, but that’s to be expected.

7)  They will give us FREE sedation at each appointment.  Our insurance doesn’t cover it but they won’t charge us.  No kidding?

8)  We left with toothbrushes, stickers, and appointments for cleaning for two separate Mondays in Jan and Feb (I’ll leave the opposite twin home with a sitter).

9)  They went back with me to the bathroom where Fred got another diaper change.

10) They WALKED to the lobby— I never unfolded the stroller— Wilma did NOT flop down, refuse to move, scream, whine, or cry.

11)  The valet drove the car up, I paid and tipped, and he STAYED with me while I got both kids in carseats and HE put the stroller in the trunk.

 

SpongeBob SquarePants (character)

Image via Wikipedia

12)  Nobody was crying or screaming, so we went to target next. Wilma picked out more panties.  Why?  Because starting next Friday the 23rd NO MORE PULLUPS except at night.  Her teachers agree that over winter break we should do panties all the time and then when she comes back to school just send lots of panties and changes of clothes and let’s hope for the best— she’s about 80% trained now—– NO #2 in the potty yet, and NO #1 in the potty unless I tell her to (she never tells me), but I’m telling her enough that she’s staying dry ENOUGH.

 

I’m in shock!  This was the first time in ages that I’ve had a successful trip out with BOTH kids that wasn’t at walmart or target (where I can throw them in the cart).  Not only was it successful, it was the DENTIST– which could have been soooooo horrific.  He remembered past dentist appointments and freaked a little, but calmed down so incredibly quickly.  GO FRED AND WILMA!

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