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

Archive for the ‘Autism’ Category

Pharmacy Hour

Some nights I just want to chuck the risperdal, vitamin D, multivitamins, probiotics, fish oil, geodon, adderall, colace, NAC, tenex (gotta crush that one of course), and last week benadryl (but no more albuterol because I was told maybe THAT caused more aggression) (Fred was sick- he’s fine now, but every time he gets a cold he gets R.A.D.) ………..out the window and just tell the kids to go to bed. There are families out there who don’t have pharmacy hour between exercise time and bedtime– amazing.

Med update:

risperdal—–  WAS working well for Fred.  Until now.  He’s now at the highest dosage and he’s been suspended from school 5 days out of the past 6 weeks.  Emergency IEP meeting—- I asked for a 1:1 aide.  Denied because “he has more good days than bad”.  I asked that they stop suspending him because you can’t suspend impulse control into a kid with autism.  Denied.  I asked for another FBA– got THAT rolling.

Vitamin D—- Wilma is low.  Duh, we’re in Ohio.  Why is Fred not low?

Geodon— working fairly well— she’s having a good year.  Today I was told at her anal manometry that they’ve not usually done manometries on kids on such strong anti-psychotics.  yeah, ok.

Adderall— working super well—- she always does homework nicely, and always sits through class well, needing just a few breaks per day.

Tenex— just added it for the finger picking and forehead picking…… she gets one pimple and spreads it into a little colony by picking and picking.  Fun times.  Tried tenex before and it did nothing, but that was years ago.

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Being An Autism Parent

autism meme

Suspension

Fred got suspended for reaching into a (male) student’s pants and underpants to touch him inappropriately.  Just in the past few weeks, he looked up inappropriate videos on the school computer, got suspended for violence, and now this thing that’s just……. *sigh*—– yeah it’s bad. The roller coaster of these kids and their issues is intense.  I cannot believe how FAR he went this time.

Suspended kid really feels suspension is a complete deterrent. (not) He was home without his sister. Even though I’m not taking him anywhere fun  (yup, he asked), and even though he doesn’t get to stim on the ipad/tv etc because I’m a mean mom who is making him play outside and draw, he’s pretty much in 7th heaven—- a house without Wilma. Want to give my kid a consequence that makes sense? Send him to Wilma’s school for the day and make him be with her all day long.

So tomorrow will be his third day of suspension in the past month.  School went straight to suspension, no stopping at FBA/BIP even though his last one was two years ago.  On the one hand, they need to show the other students/ parents that even though Fred has special needs he gets CONSEQUENCES for his actions.  On the other hand, suspension is not a deterrent.  If you ask him WHY he got suspended, he says “for screaming”.  ugh.  Emergency IEP meeting on the 26th.  I’ll be asking for a one on one aide.  Spoiler alert:  I’ll be told no.

Hands To Self

oy vey.  EVERY day at home, Fred touches me inappropriately.  One breast, the other breast, both breasts.  I move his hands and say nothing.  I walk away and say nothing.  I tell him no.  I send him to another room.  I hope it’s a very long horrible phase that will end at some point.  How can a child who can do 9th grade math also be THIS inappropriate?  In my prayers EVERY DAY— please don’t touch your teachers or friends this way.  He has.  He did.  Up till now it was “just” his teachers.  Now he’s touching his female classmates’ breasts.  School is doing a social story and sending home a copy but I need more bright ideas……. I LOVE mainstreaming this child and I HATE mainstreaming this child.

Eight Years Old: The Official Update

All in one post because I’ve been ignoring this blog (what else is new?) while I get busy with life.

First, her encopresis/ megacolon.  We’re stuck.  We are down to one normal sized bowel movement a day  (thank GOD!)…. AND STILL the random soilings as well.  When she soils we make her sit on the toilet, get the rest out, and be calm while we wipe her and change her.  Every night after dinner she needs to produce on the toilet.  If she doesn’t, she gets an enema.  That was all fine and dandy until recently she decided she no longer wanted enemas so the threat of an enema produced a meltdown.   A 30 second procedure shouldn’t involve an 8 year old screaming for twenty minutes. Wishing there were better options. But when you’re left with very few options after trials of other stuff, (Miralax brought her back to the 10 to 17 soilings a day, new poop around impaction— she got re-impacted on Miralax) and the kiddo becomes less and less compliant, and older and stronger…… ugh. Sadly, it used to be a breeze to get this done.  She is not at all impacted.  She is on probiotics and metamucil every day.  I have NO IDEA when her nerve endings will decide to tell her brain that a poop is coming and SHE will initiate a bowel movement in the toilet without being scheduled or enema—ed.  But when that day happens, it’s party time.

Second, my husband was in the hospital for six days recently.  2 kids, 3 pets, laundry, dishes, trash, bill paying, kid appointments, etc depended on me alone that week. I had strep throat TWICE that month. Mommy doesn’t have time to get sick but get sick she did anyway.  He was in for a horrendous abdominal abcess— we have no idea what caused it but he needed six days of IV antibiotics and a couple weeks of oral.  He’s fine now— some residual pain if someone bumps into him in that area of the body– should take a few more weeks and he’ll be perfect.  waited a long time with 2 autistic 7 year olds for my appt at minute clinic. I got diagnosed with strep again. got my antibiotics, got in my car to go home, and…. minor car accident, my fault. I tapped a car while pulling out. So then there were two autistic 7 year olds screaming in the back seat because we weren’t going anywhere— the other car was a woman a bit older than me and an elderly man. The woman was trying to calm the man down by taking a photo of my insurance card and license but she didn’t feel there was any need to call the police— it was a tiny scratch on their car. The elderly man told me I shouldn’t have a license. Then out of nowhere he fakes a fall. He wasn’t even in the car when I hit it. He was standing next to it. All of a sudden he falls down. I burst into tears because I have a husband in the hospital, strep throat which hurts like heck, and two screaming kids. So the woman says they won’t call the police. Right then in the four minutes I was crying, of COURSE I saw someone I know. Long story short, they did NOT file a claim but MAN what a day!

Next, I got my TMJ splint. After six facial surgeries, upper jaw expander, braces, and retainer, I now have TMJ.  I need six months of splinting and then braces again.  So far, I’m taking it out every time I try to talk on the phone. You’d think I’d be used to orthodontic craziness but it’s been decades.  Good luck understanding me when you see me.  I sound like Cindy Brady.

My kids had winter break for 2 weeks. They have drawn armadillos playing the violin. They have watched youtube videos of “Fergie” as Stacy Ferguson from Kids Incorporated in 1984 (I totally remember “Fergie” as a child and they didn’t believe me). They have picked each other’s noses (I never said my children were normal). They have visited two different hospitals, watched me get tested for strep, gotten themselves tested for strep, been out to lunch and for ice cream, been to ToysRUs, been to the post office and the grocery store, and begged incessantly for ipad time. We did (try to) watch one movie—– my blood pressure is still high from that event (MOMMMMMMY CHANGE THE CHANNEL!). School came back again and sanity was restored.  But when you transition autistic kids back from winter break, a snow day is sure to hit.  then a four day weekend (Friday was teacher in service day and Monday was MLK).  Next up?  Spring break.  Kids are both having a REALLY rough time getting back into the swing of things…. psychiatrist thinks it’s still from transitioning back from winter break and doesn’t want to make med changes yet.  CURRENTLY he’s on risperdal which had been working well till now, and she’s on adderall and geodon.  Switched to geodon from abilify which was making her gain weight.  Not sure if i’m hating the geodon, or hating that we just had winter break.

And finally, Fred might be a panda.  🙂  In a neurotypical child, if mom gets strep throat twice and has both kids tested to see who the carrier is and one kid is a non symptomatic carrier of strep and gets two antibiotics, gets tested again, and no longer has strep, you’d be done.  In MY child, since I don’t know whether his behavior increases lately are from winter break or from strep causing PANDAS (I’m too lazy to explain it– please use google) since he acts a LOT like a PANDAS kid, he’s now about to do a month of a third antibiotic— PANDAS protocol with our pediatrician’s office.  If it helps his behaviors, we look into a PANDAS diagnosis (would that help him move up the medicaid waiver wait list so he can get ABA sooner?  hmmmm).  If it doesn’t, then hey— at least we know he’s no longer gonna give me strep again (which hurts like a bitch in a grownup, by the way!).

I’m working more recently.  Aside from Mary Kay and Send Out Cards I also have a small social media business.  Just one of my social media clients wants me for at least six hours each week.  Financially, yay.  Housework wise?  bleah.

Oh and Fred, dear sweet Fred.  BIG meeting tomorrow with the IEP team and the head of gifted for the whole district.  They are now giving as much attention to his IQ and his gifted identification as they are to his autism and at this point, they need to differentiate his instruction more than is comfy. I’m not sure they’ve ever seen such a low functioning kid (psychiatrically, behaviorally, socially) who is so academically advanced.  I just don’t need to be told that it’s the highest IQ they’ve seen in many many years when the boy still poops himself from time to time, ya know?   On the table is skipping a grade (I’ve said no before, but they’re starting to convince me, if they keep him superglued to an intervention specialist who gets him), a gifted program at a different school, or a really individualized program.  I’ll know more tomorrow and I will try not to wait two months to blog again so you all can catch up.  As for Wilma, she’s not gifted, doing fine academically, and will stay at her current school in the correct grade.

Now— kids are back in school.  No more hospital for Abba.  No more strep for me.  Can my life please get boring again?

Oh yeah, they turned eight.  Woot!

 

 

 

 

 

 

 

Just Venting

Many years ago the pediatrician sent us to the psychiatrist.  The psychiatrist sent us to the wrap around center.  the wrap around center was awful so we begged to get into the developmental pediatrician.  She bumped one twin to the psychiatrist (a different one).  She referred both twins to the nutritionist.  Both twins lost weight.  Psychiatrist had Fred change meds and his blood sugar went up and BMI isn’t good.  Developmental ped keeps Wilma on a med that makes her gain weight and her weight increases greatly.  Her BMI is awful.  My husband is insulin dependent diabetic and I have hypoglycemia and had pretty intense insulin dependent gestational diabetes so….. She refers both twins to the endocrinologist.  Endocrinologist is doing A1C’s on both twins, sending both twins back to the nutritionist, and asking us to enroll in a weight loss program that asks us to come in at least weekly.  With 8 hours a week of ABA on one twin, speech therapy on both twins, 2 hours of homework per week per twin, and tutoring/ friendship circle/ other activities, I’m finally stepping off the treadmill and saying NO to the weight loss program.  Each developmental ped appointment takes two hours— this morning’s endocrinologist appointment took two hours—–  getting bloodwork from Fred requires an entire building to take a valium.  This morning’s double meltdown at the endo was because I wasn’t going to be able to get Wilma to school in time for the beginning of recess.  ALL of our appointments are within ONE hospital system (at a bunch of different campuses)——-  something has got to give.  DOCTORS:  STOP ASKING THE SAME QUESTIONS at every appointment.  Spend 15 minutes looking on the computer at the history from multitudes of other doctors— then bring us in, do some poking and prodding, and ask a few questions.  My kids are missing too much school and I’m missing far too many brain cells.

First Day of Second Grade Tomorrow

Most moms worry a bit about second grade starting— they worry about whether their kids have all their supplies, whether they’ll eat their lunch— whether they’ll like their new teachers.

Me?  I worry that my enco kid will poop at school.  We’d BEEN on a straight after dinner schedule for a while but over the past few days that’s gone out the window (perhaps since school is starting?).  I gave up on underpants here at home—-  my 7 year old pooped herself maybe 6 times yesterday (lost count) and 3-4 times today.  The once a day after dinner poop doesn’t concern me vis a vis school…. but this new schedule is worrisome.  She’ll have the same aide as last year who will help her change, force her to get the rest in the toilet, deal with the meltdown, etc….. but as years go by it’s more and more heartbreaking.  I hope I sent enough underpants changes.

I worry that my other kid will get enough bathroom reminders— if he’s not TOLD to pee, he’ll happily wet himself.  I worry that he’ll spend 95% of the day screaming his head off.  I worry that he’ll continue to ignore everyone at recess and count the woodchips or line up trash he finds on the ground.  I worry about meeting strange kids at the library again and again who tell me “oh, your son goes to ___ school.  He’s the one who screams all the time!”

Academics?  Not worried.  Social skills, behavior, and toileting?  Very worried.

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