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

Today, we finished an enormously long process.  Wilma is now finished with her third diagnosis after a summer of EEG/ MRI/ bloodwork/ neurologist/ psych consult/ 5 appointments at the autism center/ stacks of paperwork.

About a year ago is when we started to suspect something was up with Wilma other than “just” hypotonia and a speech delay.

Someone on a message board where I had posted some of Wilma’s symptoms 5 months ago asked for an update and I realized that a TON has happened since then and I haven’t updated everyone.  We did the MRI, EEG, bloodwork, psych consult, neurologist, and a few truckloads of paperwork.

The MRI and EEG showed no seizures.  Meanwhile, her behavior got a LOT worse, almost overnight.  Her out of context speech got a lot worse too.

Hey Wilma, what’s up?  “why do the cars change traffic when the jaguar has a tail on it?  because they have sippy cups.”    Every word is English but when she’s having an episode her sentences make no sense and words just come flying out of her brain.  It happens often and it freaks people out.

Five months ago, she had no ASD symptoms that I could pinpoint.  Now she has a ton of them!  I filled out the vineland and srs, etc etc and we had 5 appointments in the last 2 weeks to give her a pdd-nos diagnosis.  Her autism is a million times different than her brother’s, but I finally do recognize it as autism now that this summer has gotten more and more spectrummy for her.  As of this morning, pdd-nos is official.  She now has hypotonia, adhd, and pdd-nos.  ODD is part of her pdd-nos but the psychologist assures me that though we’ll now be traveling down the path of psychiatry appointments and medication management, we will not need a separate ODD diagnosis— it’s just a piece of her pdd presentation.

Meanwhile—- we ruled adhd right back in— the psych and the neurologist got on the same page and diagnosed her and started her on meds.  The first week on meds I saw NO DIFFERENCE and was getting frustrated.  Week 2— I saw a difference–Thank goodness!   There were 2 days in a row that she didn’t scream or tantrum or throw things or kick or hit or even be oppositional.  Day 3 we saw glimpses of misbehavior and she needed some time outs again but STILL.  It’s not perfection, but I’ll happily take an improvement!

I’m seeing glimpses of how she used to be at age 2 and 3….  calm and compliant and sweet…. I’d missed that lately!

So she’ll continue with physical, occupational, and speech therapy and special ed.  She’ll be in preschool from 12:30 to 3:30 tuesday through friday in an integrated special ed class.

More good news.  We’re up to averaging about once a day for potty success.  WHEN she’s in the mood— she’s compliant, her meds are working, and I suggest trying to make on the potty, she MAKES and is so proud of herself.  I try to encourage her to sit more often than once a day but she’s just not ready.   “no mommy I don’t want to pee on the potty now– maybe later”.  (on a good day when the clonidine works well) and “ASDSDGHDSFHGSDGHDSHJHJJJ!!!!!!!!!!!!!!!!!!!!!!!!   NO POTTYYYYYYYYYYYYYYYYYY!  (runs around the house naked)  (on a bad day!!!!)    With all the tumult in her life (and with all the craziness of toilet training her brother) I’m just not pushing quite yet.  Let her get used to her new preschool class first.

But then when she’s having an episode of adhd/pdd  whatever the heck she’s got….. I’ll say “do you want to sit on the potty?”  and she’ll tell me she was an astronaut last tuesday because she ate a pizza.  *sigh*

Meanwhile, when people first meet my kids, if she’s acting normal, her twin brother is the one who’s more obviously special needs and people wonder why she’s not in a typical school setting.  But this summer she hasn’t acted normal a whole lot…..

ABA has now been recommended for her.  I have no idea how to get it without spending money……  we were lucky with Fred— the school district ALSO felt he needed ABA.  The school district feels that Wilma does well with an integrated classroom setting (hey— she does– they’re right).  So I don’t know how to get her free or cost effective ABA.  Something else to consider.

Today’s facebook status update:   adhd diagnosis and pdd-nos diagnosis now finalized- she’s on meds. Now she needs a psychiatrist for med management and now possibly going in a different direction for potty training—- it was suggested that we give consequences for wetting herself….. I’ll go over that idea with our board of developmental disabilities rep.

That’s just one of my twins…… well, something has to give, between all the specialist appointments, therapies, and paperwork for both twins…. since my sanity has been hanging by a thread lately, I’m about to be making big changes in my business.  More on that to come— I need to call my friend tomorrow and discuss it with her first.

The end of the road (finalizing her diagnoses) is just the beginning— I’ve learned that multiple times in the past few years.  These things tend to lead to more paperwork, more processes, more waiting lists, more phone calls, and more frustration.  On the other hand, the more of this we do now, and the more glimpses of normalcy we see, the more of a chance we have in the future of mainstreaming the twins into a typical school setting.

A neighbor told us that so and so (another neighbor with a kid with autism) gets 3 hours a day of respite.  3 hours a DAY?  what?  So I spoke to her and she told me to beg for it, demand it, and just not take no for an answer.  Not my personality for sure.  I’ve been very thankful and grateful for the $2000 a year I *am* getting.  However, I spent $1200 of it on daycamp this summer and another $400 or so on an in home respite care worker (babysitter, really).  I do need more.  I’ll do a little begging, but I have to prepare for the eventuality that I’m not going to get much of a break this school year……  Fred will be in preschool from 9:00 to 2:00 Tuesday through Friday.  Wilma will be in preschool from 12:30 to 3:30 Tuesday through Friday.  That leaves me 4 days a week from 12:30 to 2:00 without being in charge of a child with severe behavior problems.  12:30 to 2:00 4 days a week to do all my laundry, bill paying, cooking, cleaning, organizing, money making……  good thing I’m a night person and I’ll also have nights but I’ll write another post soon on why that’s not really true……

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Comments on: "The End of The Road is Just the Beginning" (2)

  1. mother's helper said:

    I am SHOCKED to see ODD in this picture. Not that I don’t think it’s possible, but I kept telling my son’s “people” it fit his temperament for years (starting at about the same age as Wilma) and it wasn’t officially added until about 5 years and 3 hospitalizations later.

    My two cents…..12:30-2:00 make money and those pesky phone calls and such that can’t be done after hours and enlist the assistance of your HUSBAND after the kiddo’s are down to clean and do laundry at least. But you knew I was gonna say that didn’t you 😉

  2. She’s only odd a few times a day– it’s not CONSTANT, and she’s not that way with everyone—- at school she’s mostly an angel except with transitions. So it’s not a separate official diagnosis, just written as part of her pdd-nos presentation. MANNNNNNNN was she odd a few minutes ago— she’s now in her room for a 4 minute time out where I think she has fallen asleep— she works herself up into such a frenzy. *sigh*. time to go wake her.

    Hubby, otherwise known as Fred and Wilma’s dad…. 🙂 …… he has no part in bill paying or laundry or checkbook balancing or appointment making. he does dishes. He doesn’t do them OFTEN, but he does them. 🙂 He’s got his own stuff going on— he’s working till 6:00 this year and then tutoring some evenings after, teaching one evening after….. going to maariv at shul at 10:00 pm, etc etc. I can’t depend on him to be home in the evenings. As you know, he’s awesome though. I’ll write a whole post at some point on how awesome he is.

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