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

Archive for December, 2012

If You give an SPD kid a Pancake

Just re-reading some fun autism posts I’ve got saved in my bookmarks and I just have to share this one….. it ROCKS.

READ IT.

 

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.

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