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

Archive for the ‘Clonidine’ 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.

Support Groups ROCK

I’m in three, count em, THREE support groups.  Actually more than that if you want to count the facebook groups I’m in.

#1 is an email only group for moms of kids with adhd.

#2 is an every other Tuesday moms group via the local Jewish special needs group.

#3 is a six week Tuesday evening group at the local autism center.  The second session is tomorrow night—- this one costs money but our insurance covers it.  Whammo!

Just for kicks I’m posting here one of the posts I sent to group #1.  This will give you a glimpse into our lives.  I took out all identifying names.

——-

hi everyone!
 
______, you are so lucky that you were able to do build a bear and mini golf and fun and stuff, etc etc.  My kids can’t handle most of that stuff and anytime we’re invited to ANYTHING we seriously consider whether we’re going to go and how much support we’ll need to be able to go (come late, leave early, bring lovies, bring pecs, is there a quiet hallway to escape to, do we need strollers, etc etc etc).  I blogged about that actually.  https://sortedmegablocks.wordpress.com/2011/10/17/autism-awareness-in-the-jewish-community/
 
So here’s what’s going on in our lives lately—- the center for autism wants both my kids to have ABA.  ABA isn’t offered in public school.  If you want to get an ABA based curriculum at ___________it comes with a pricetag of $70,000 and the autism scholarship only covers $20,000 of it.  So I figured ANYTHING but public school was financially out of reach for us at this point.  But I’ve been doing research.  I blogged about our big kindergarten school decision.  I found a “free” ABA based program.   neither of our twins will be toilet trained by kindergarten, both (one more than the other) need ABA…… 
https://sortedmegablocks.wordpress.com/2011/11/04/anyone-have-a-crystal-ball/

By the way, if you’re new to my blog, Fred is _____ and Wilma is ________— I don’t use our real names on the blog.  🙂
 
As far as ______ and her ADHD——  far above the hypotonia and the pdd-nos, the adhd is now the stumbling block to potty training.  I have her completely potty conditioned—- *I* sit her on the potty once an hour every hour and she pees.  But if she needs to go at another time (she has a lot of juice and I don’t sit her down 15 minutes later), she doesn’t tell me, she doesn’t go, and she simply wets herself— pullup, underpants, whatever— she doesn’t care— not only that, but she thinks it’s funny.  “look mommy, I wet myself!”.  So I calmly clean her up and say next time you’ll put your pee pee in the_______  (and wait for her to say potty) and with a BIG GRIN she says “in my PULLUP!”  or “ON THE FLOOR”!  She thinks she’s so amusing.  Seems to be the adhd.  I don’t know how to get over this hump because bribes, charts, and taking away priveliges for wet pullups aren’t working.  No success at all with #2—- she NEVER puts that in the potty.  And NO success at school—- she refuses to USE the toilet at school— she just SITS on it.  School has prizes ready for her and stuff I sent from home too.  She doesn’t care.  We’ve got laminated social stories complete with pictures of her sitting on the potty— it’s ridiculous.
 
her clonidine has helped her tantrums, certainly, but it’s making her super tired.  She naps 3-4 mornings a week now.  (preschool is afternoons only 12:30 to 3:30)   But that’s better than non stop screaming.  Gotta get her a good psychiatrist– the neurologist doesn’t want to handle med mangement for the adhd AND the pdd-nos and frankly I need someone who can really dig deep into ____’s whole case and maybe change her med completely at this point.  Any recommendations for a psychiatrist for a 4 year old?
 
And then there’s brother bear.  No ADHD, but the autism is getting worse, NOT better.  He *IS* verbal, which is a bracha, but it’s also a curse.  We’ve been denied SSI because he’s “too high functioning”.  We’ve been denied extra respite because he’s “too high functioning”.  I can’t take him and ______ together anywhere by myself except somewhere with a cart where I can contain one of them to keep them apart.  At home, I send him to his room to get him away from _______ (and he’s HAPPY to be there).  But out in public when she whines and he bites her and I’m alone with them trying to pay for groceries,  well, it’s fun times.  I have a lot of trouble walking them both from the car into an office or store— she flops down and refuses to walk if she’s tired or ornery.  If I pick her up, he gets upset and bites me.  So you’ll see me in a parking lot holding both their hands just standing there while he’s screaming and trying to bite me and she’s flopped down not moving and I’m (patiently) waiting for her to get up.  Some days I feel like toilet training is the least of our issues but I know that toilet training is the benchmark which will eventually enable one or both kids to mainstream.  But they’re about to turn 5 so I’ll have two 5 year olds who aren’t toilet trained and can’t dress themselves and have massive problems with self regulation.  And I can’t get government programs or SSI, so everyone thinks I can raise them with only part time preschool WHILE making a full time income because chas v’shalom there be a job out there for my husband with enough money to support a family.  Good luck to me—- I’m working at MIDNIGHT via internet— it’s insane.
 
I’m feeling very STUCK between the worlds of neurotypical and special needs.  If my kids were neurotypical they’d be toilet trained, they’d be at __________, I’d be able to work a decent number of hours, and things would be calmer.  If they were special needs ENOUGH, the district would pay to send them to ______ or another ABA based program, they’d be in a very intense enviornment all day, we’d be getting SSI and a decent amount of respite funds, and things would be calmer.  As it is, they’re too special needs for a neurotypical environment, and not quite special needs enough to get the help we truly need.   I think this feeling is common for moms of adhd kids, but in my case I’ve got the ASD stuff too and I still feel it.  Just thought I’d throw that out there– anyone feeling what I mean?  Most of your kids ARE neurotypical ENOUGH to be at a Jewish day school, but I know some of you are feeling like they don’t fit in there— but certainly they wouldn’t fit in in a special ed program either……  it’s tough!
 
Sorry for the novel…….  I have a LOT of thoughts lately!

Working Hard? Hardly Working?

I’m supposed to be working full time.

A decade ago when I decided to have children I picked up a part time hobby which became a part time business.  As we were moving through the intense infertility battle, I was having my own health issues and needing to take breaks from the battle.  I decided to stop working full time, put my part time business into higher gear, and be a work at home mom…. Before the kids came.  I knew ultimately I’d want to be making a full time income from home so that I could spend as much time with my children as possible.  Everything was going quite nicely when I finally got pregnant and had the twins.  Even after the twins were born, I was remaining in the top 2% of my company, holding weekly meetings in my home, marketing to new customers and building a sales team.  Direct sales was my baileywick, and I was also a pretty good mom.

Their special needs hit slowly, and one at a time.  By the end of the twins’ first year, we felt there were some delays but “they’d catch up” and maybe they’d need special ed but “just for a little while”, and there’s my favorite line of all – “well, they WERE preemies”.  I was doing all I could to work as many hours as I could, and things were plugging along.

 

False Sunflower Heliopsis helianthoides 'Summe...

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Fast forward to now.  My twins are almost five years old, and I have exactly eight hours a week that they’re both in school at the same time because they need different programs.  I meet the special ed bus outside four times a day.  I’m potty training.  I take Wilma to private physical therapy outside of preschool hours and leave Fred home with a babysitter.  I had twenty appointments in the last few months JUST for Wilma’s last two diagnoses:  adhd and pdd-nos.  (The EEG, the MRI, the bloodwork, the neurologist x2, the adhd appointments, the five separate pdd-nos appointments…. Etc).  Their behaviors literally take my breath away some days.  When they were babies I was not dealing with time outs and behavior charts and calming techniques and horrific outbursts in the middle of walmart (that was my morning today….).  I diapered them, played with them, and while they napped, I worked.  Now I’m SORT of able to work after they go to bed except that I also need time to do laundry, cook, clean, pay bills, balance the checkbook, shop, and organize…. And I can no longer do ANY of that while they’re awake.  Plus, bedtime is never truly bedtime since Fred chooses to make #2 only after I put him to bed and lately Wilma cries when I put her down (something to do with the clonidine, we think) so she needs multiple hugs and kisses after bedtime.

So it’s come down to this big decision.  I need a full time income.  I also need my sanity.  I don’t know any other mothers of multiple special needs children who are working full time or even part time with great consistency.  I decided to leave my position at the top 2% of my company and continue to sell product without the pressure of being in charge of a sales team.  I wasn’t able to put in the effort needed to go to my meetings (let alone run them), put out newsletters, do conference calls, etc.  I’m able to be an unpaid full time special needs interventionist who happens to be in direct sales on the side.  I used to be a sales director with a direct sales company who happened to be a mom of special needs twins.  This was a really tough decision for me.

Fellow special needs moms, do you need to make a full time income, or does your spouse provide well?  If you need to make a full time income, how do you balance your working with the therapies, doctor’s appointments, and paperwork?  I find I spend at LEAST 15 hours a week on paperwork and therapies and appointment setting (and online support groups!).

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The End of The Road is Just the Beginning

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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