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

Archive for the ‘Health’ Category

COVID 19

Well now all of a sudden we’re living what will be a chapter in our grandchildrens’ textbooks.  If anyone is living under a rock….. the whole world is passing around a novel coronavirus (it probably started in October or November and for most people it’s no big deal but the death rate for those who are elderly or suffering other health conditions is extreme enough that bit by bit over the last couple of weeks everything except groceries, pharmacies, and gas has been shutting down.  Places of work, schools, restaurants, entertainment venues….. it’s all on a long break.  As is my sanity.  I love my children but there’s a definite reason I’m not cut out to homeschool.  We’re about to start their second week of no school (and no time for mommy to work)….. it’s a disaster for them and us emotionally, it’s a disaster financially— it’s just a disaster all around.  THANK GOD, though, none of the four of us have this illness as far as I know.  I’ve been coughing and blowing my nose daily since January, some weeks worse than others but I think at my age (45) I’m finally beginning to develop allergies since I’ve never had a cold last for months.  When the dust settles I’ll go back to an allergist (I had a horrible case of hives in 2005 so I’d been to one before, but that allergy cleared up and I was fine since then).  However, I’d been functional (as functional as someone with all my other health stuff CAN be— I’ll get to all that at some point) enough to do my appointments, my kids’ appointments, errands, etc etc.  But now?  All day in my jammies.  Listening to my kids bitch about school work.  Breaking up my kids’ fights.  Fun times, y’all.

US Intelligence reports warned about a possible pandemic back in Jan and Feb.  NOW in mid March we’re finally shutting down and staying home.  I have so many political thoughts…. but…

Let’s look on the BRIGHT SIDE!

1) My kid who lives in pajamas actually gets to live in pajamas. I make her shower and change pajamas, but…. details.

2) We sleep as late as we want and nap when we want.

3) The “school day” is less than 2 hours long.

4) Gas prices went way down.

5) I’m still stressed because I have two autistic kids at home I have to keep on task and keep from killing each other, but it’s a different TYPE of stress. No more juggling 83 million appointments a week— all non essential appointments are….. vanished from the calendar. Even my surgery in June will likely be postponed because it’s not an emergency and nobody will be caught up by then.

6) MY HUSBAND IS HOME EVERY NIGHT DOING DAF YOMI BY SPEAKER PHONE! No, I’m not sitting there listening, but just hearing a bit of it in the background as I’m doing other things makes me so happy…. it’s a huge part of his life of which I’ve never been a part.

Having listed all the positives….. um…. let this nightmare be over SOON.  PLEASE?

I Need Another Surgery

This one will be #14 I think (I’m losing count).  This will be very painful, but a short recovery from what I understand.  This one is NOT kidney related.  Even though I’m sort of anonymous here, some of you do know who I am and I’m not sure I want to share surgery details this time– I’ll think about it.  If you know me super well, message me on facebook and I’ll tell you— I just don’t think I should put it out there for the world.  It’s a problem that I tried managing with medication and the medication made the pain  significantly better….. but caused another major problem.  I’ll see the surgeon on March 12th and then I’ll schedule.  Fun times.  During my hospital  VACAY (I get to NAP!  I get a break from chores and working on Wilma’s colon!) I will insist that hubby once again do Wilma’s colon— and once again he will need training because he hasn’t done it since once the last time I had surgery.  Remember when I said we’d only be using a cecostomy for a couple of years?  I lied.  There’s no way we’ll even TRY to wean until halfway through high school at this point according to the specialist.

Look What Came Out Of Me!

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The surgeon called yesterday and bumped my stent removal from tomorrow to yesterday! One was way down low so all the pain right there makes sense. Post procedure pain last night but for the first time in 5 weeks I can walk normally…. no stent pain!!  Today I did everything I’ve been WANTING to do….. tidy up, put away laundry, tidy up…..  ok, it wasn’t a fun day but my goodness I feel so much better physically and mentally!

The surgery to insert these puppies was at the end of September.  The surgery to take out the kidney stones and put these puppies back in was at the end of October. This health nightmare is now over.  Ok, aside from a 24 hour urine collection, ultrasound, xray, and follow up with the surgeon all in a month.  🙂

The stones were calcium oxalate so no more spinach or almonds for me.  Gotta be more careful with my diet.

Between Two Surgeries

I’ve had twelve surgeries in my 45 years thus far.  Only eleven, had you asked me last Thursday.  I’m now in a holding pattern between surgeries 12 and 13 because of COURSE I have time for all of this with all that’s going on with my children, right?

A couple of weeks ago I had weird tummy pains and diahhrea and I RARELY get diahhrea.  The last time I had tummy pains and diahhrea and it wasn’t a 24 hour bug…. I was in the ER with a UTI.  So because I had minor urethra pain  as well with these pains I called my doc and asked for a UTI antibiotic.  Without seeing me, he prescribed it.  A few days later, I was fine.  A couple days after that, I got a lot worse, so, self diagnosing again, I decided I was getting side effects from the antibiotics so I did what every busy mom does at some point— I took myself off the antibiotics.  For a few days I was fine.

Last Tuesday I had HORRIFIC pains in my right side.  They went away after 15 minutes and I was fine the rest of Tuesday and Wednesday.  I chalked it up to gas.  The pain wasn’t near the kidney, really.

In 1995 I had kidney stones and with great pain meds and a pee strainer was able to pass them on my own.  On Thursday afternoon when I had horrible kidney pain and started peeing blood I realized that the past couple of weeks had been leading up to this realization—- oh crap, the stones are back.  I called a friend to drive me to the ER and drive back home to wait for my kids to come home from school until my husband could be here.  I figured I’d get great pain meds and a pee strainer and go home Thursday night.  Wrong.

I have one small stone on the right causing all the pain and one LARGE stone on the left causing urine to back up to where it shouldn’t go.  The doctor at the ER on Thursday afternoon was far too peppy when he told me there was no way I’d pass the big one on my own, and off I went via ambulance to a different hospital for stent surgery.

I had last eaten at 11:00 Thursday morning while taking my kids to a double psych appointment (ironically at the hospital where I now was on Thursday night!). Surgery got delayed and delayed and delayed and finally on Friday afternoon at 2:00 (when I was feeling super weak and dizzy from not having eaten) I had the stents placed.  I was in the hospital until Saturday night.  Bikkur Cholim cooked our Shabbos and Rosh HaShanah meals and I’ve been home resting through Rosh HaShanah.

Now I still get minor kidney pain every couple of days but not as bad as Thursday, and I have constant stent pain.  I’m peeing blood 100% of the time now.  I am VERY much looking forward to the next surgery where they will go in and zap the stones!  Meanwhile, life goes on and I can’t lie in bed until whenever the next surgery gets scheduled so I’m  in a pattern  of…. do a little laundry, lie down with the heating pad….. cook a little, lie down with ibuprofen…… do Wilma’s colon  treatment, lie down to watch tv…….  I can’t say I mind the forced rest!

Playing Catch Up

Trying to catch up on this here bloggity thang.  Looks like I never updated y’all about the school situation?  Wowza.  Was too busy living it to blog it.

Fred was kicked out of public school.  Suspension after suspension after suspension— multiple emergency IEP meetings where they granted us a 1:1 aide just for 30 days even when I warned them it should be an rBT supervised by a BCBA and it should be the same aide…..  suspension was not a deterrent, his impulse control got weaker and weaker, and his desire to GET to stay home from school got stronger so he would punch teachers on purpose to GET suspended.  “Our policy is” are my least favorite words.  The district now spends thousands to send him to a behavioral school.  I LOVE his new (not so new anymore!) school.  THEY NEVER SUSPEND.  THEY WORK WITH BEHAVIORS.  I’m thrilled.  This school goes through 12th, but they’ll attempt to pull him back into public much sooner.  Momma bear will be ready to fight again for no suspensions for autism related behaviors.  Suspend a kid in a wheelchair for not trying harder to walk, why don’t you?

Wilma is doing great in public school.  So great that we tried to put her in a Jewish school with just a 1:1 aide.  Medicaid would have had to pay for at least 20 hours a week of the ABA aide— they weren’t willing.  Our state’s autism scholarship can’t cover a full time rBT and she can’t handle just ANY aide— she needed a behavioral aide if she was going to be in a school with no trained intervention specialists.  So— she stays in public.  GREAT, but her new middle school will be 1200 kids.  Already had the transition meeting and I’m cautiously optimistic.

Fred is on depakote and straterra currently.  Wilma is on adderral, geodon, all the junk through her C tube, and……..  birth control.  We had to stop the heavy periods.  On depo-provera she gets a normal period every 3 months instead of a heavy one once a month— it’s working fine and now she can wear underwear and pads during her periods and go to school and camp instead of stay home and fill pull ups with bowel movements that go completely whacko during heavy periods.

They’re in camp for six weeks— the ONE daycamp on this side of town that takes their medicaid waiver, works with kids like them, and is right for them.  He was suspended today and I had to have THE TALK with the director.  PLEASE PLEASE don’t get suspended again, kid.

 

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.

Seriously?

I haven’t blogged since May.  Seriously?

Here’s what you missed.  Wilma KILLED my finger.  Got 3 xrays– it wasn’t broken– “just” a bad sprain.  But that bad sprain hurt worse than many of the broken bones I’ve had in my life (all my broken bones have been on purpose through surgery- never by accident– funny that.)  It’s been about 10 weeks now and I’m starting to have days where I don’t notice the pain at all.  Until I try to bend it.  ugh.

My mother in law died.  She had battled lupus for over a decade valiantly— we all knew this was coming.  Except that we didn’t.  We all thought we’d get another year or two out of her— everytime she was hospitalized we figured she’d make it back to the nursing home and we’d still have more time.  So we were all very shaken up.  She had gotten out of the nursing home after 10 months and had been living at home for 35 days when she was hospitalized for a listeria infection (she was prone to every infection).  She got pneumonia and respiratory distress and we STILL thought we weren’t losing her. But then the internal bleeding started and the doctors stopped all medications except for morphine and told my father in law that the time was coming that week.

Shiva was surreal.  In our home we had a million chairs, an Aron and Torah, tables, siddurim, a candle burning for a week, minyanim three times a day, and the kids were out of sorts to say the least.  Picture me upstairs every morning at 7:00 am saying “shhhhh the men are trying to daven– you CANNOT yell tushy!”.  The community cooked dinners for us for a week (good thing— I had to do all the camp schlepping, all the laundry, all the dishes, EVERYTHING— hubby wasn’t allowed out of the chair for a week except to go to the bathroom).  If you’re unfamiliar with Orthodox Jewish mourning customs I encourage you to google.  It’s fascinating.  Comforting and CRAZY at the same time.  I don’t remember five minutes of calm that week.  Whenever a minyan wasn’t happening, visitors were.

Camp SUCKED this summer and the kids aren’t going back next year.  I mean it this time.  Fred got Hand Foot and Mouth disease on a Friday (no camp on Fridays) so we kept him home from camp that Monday.  Camp nurse calls to send Wilma home.  She’d been exposed.  It’s not the plague, people.  So she said I’d need a doctor’s note to send both kids back the next day.  Rushed them both to the doctor on Monday afternoon after getting her.  Got the note— she didn’t have it and he was no longer contagious.  Sent them both Tuesday.  Got the call again— they didn’t like the look of his rash and he needed to stay home for a week.  So I kept her home on Monday for being exposed, and kept him home for a week for a no longer contagious rash.  That’s the kind of summer we had with this place.  The DUMBEST projects came home after they asked me for an explanation of where they are academically and I gave it to them in writing—- they had them doing preschool level worksheets.  Daily.  And watching movies.  Daily.  There is exactly one AFFORDABLE special needs camp on this side of town and I’m DONE with it.  Next summer– camp Mommy?  ugh.  There was a month between camp and school (that month ends this coming Monday) and I feel like a truck ran me over.  In order to send them to a “typical” camp I’d have to come up with tuition for 2 kids and $$$ for two one on one aides for 2 kids.  In order to send them to another special needs camp I’d have to pay more money or shlepp them to the other side of town.

But what’s on my mind this week is the title of this post…. .SERIOUSLY?  Just the STUPID ridiculous things people have said to us this summer about our kids and/or about my mother in law dying.  Here’s a fun sampling.  PS— the ones that involve Orthodox Jews?  I’ve been asked to stop posting about those on facebook because of Chillul HaShem.  You know what’s Chillul HaShem in my book?  People not being aware that people of all colors, shapes, sizes, and yes, religions can be ASSHOLES.  Sorry for the language but it’s my blog and I’ve got to curse.  Read on.

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1)  When my husband takes one of our kids for a walk in the special needs stroller and walks by a particular house, a bratty kid (unsupervised of course) says….  “WALK MUCH?”   Another group of kids (with the father right there not saying anything because he can’t stand our kids even more than his children) says….  “baby baby…. goo goo gaaa gaaaa”.  Yep, fellow Orthodox Jews.

2)  When my husband asked a man at the zoo to please stop staying at our son (who was screaming “I AM A PSYCHO!”), he got punched.  HARD.  In the stomach.  (my husband, not my son.  But still!)

3)  Right to my husband’s face  “is your son still a freak?”

4)  At synagogue my husband was told he shouldn’t say kaddish for his mother because she didn’t believe in God.    Nobody said anything because the person who said it learns full time (in Orthodox Judaism the men who learn full time and don’t work for a living are held to a very high regard by many.  Me personally?  I’m FINE with men learning full time ***IF*** they can do it without Medicaid, food stamps, WIC, section 8, and all the rest because sucking off the government is not “making it” financially nor is it supporting your wife and family.)  So when someone saves for years in order to enter Kollel I think it’s wonderful.  How often does THAT happen?!?!

5)  I think the extreme idiot award goes to the person calling himself an Orthodox Jew who told my husband his mother died because he shaved off his beard like a goy (deragatory word for non-Jew). (my husband follows Rabbi Moshe Feinstein who wrote about how men living in America can shave their beards for particular reasons while being Orthodox Jews).

6)  During shiva, a tzedakah organization called for money. Hubby said no, he’s sitting shiva. They called back and left a message and an email. The email said that she died SO THAT he’d have a chance to donate to a worthy organization—- guess who is never getting a penny from us!??!?!? what is WITH people?

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That’s all for now– just needed to get those tidbits off my chest.  I have PLENTY more to say on various topics so I WILL try to blog more frequently…….

 

 

Result!

okidokee—  I have big news.  6 and a half years old….. 4 GI cleanouts, 3 xrays, countless enemas, laxatives, probiotics….megacolon, non retentive encopresis……  3 days before the spinal MRI….. Wilma had her FIRST ON PURPOSE poop on the toilet that wasn’t enema induced.  YAY!  Sure, she had no idea it was coming, but she understands how to sit on the toilet and get her muscles to push and she’s willing to do it daily without a tantrum now (because of the results post enemas).  So our time to try is after dinner and she sat and tried and bless her soul— she had a result!!!!  And tomorrow she may poop herself twelve times but for tonight it’s a success!  🙂

I’m so sick of all the poooooppppppppp!

Every night I put the kids to bed.  Every night I go back into both rooms to change diapers.  Every #$%#$% night.  They’re 6 and a half years old.  Our entire upstairs smells like a zoo.

Fred, I’m not as worried—– He’s well over 90% toilet trained during the day and if I simply forced him to TRY to poop each night before bed rather than just ask him if he has to, he’ll stop waiting until his night-time pullup to do his business.  So from now on, watch out Fred, mommy is going to make you TRY each night before bed.  Won’t that be fun?

Wilma’s next GI appointment is tomorrow. She’s 6 and a half and the only 3 times in her life that her poop ever went into the toilet is after her 3 enemas (pre xray and pre procedure). She’s had xrays and a manometry so far and though the MUSCLES are working, it’s clear that something else isn’t (nerve endings? communication from that part of the body to the brain?). Her typical poop schedule is 3-4 small poops per day rather than one large one. The GI doc has been saying it’s constipation and we just need to get her pooping more often so that her muscles can retrain to feel the urge. Everytime he has her do a cleanout, she poops 15-17 times per day for 4 days in a row (meaning she misses school and I get kicked in the face a lot— she hates being changed). We’re all much happier when she poops ONLY 3-5 times per day. Clearly, he’s wrong. She might be constipated, but so what— there’s something else happening here with the nerve endings or brain communication. When she fell and needed stitches she didn’t feel the pain. She doesn’t feel pain or hot/cold like other kids. My plan for tomorrow is to ask about a spinal MRI.   If he tells us just to do another cleanout, he’s done and he’ll be lucky if I don’t beat him up. She IS hypotonic and is late on all gross milestones, but I haven’t met another mom of a hypotonic kid yet who can’t toilet train by this age unless there is something more severe.

We don’t think it’s Hirschsprung’s.  Now the possibilities include a mild form of cerebral palsy, a mild form of spina bifida, CIPA or another HSAN, Celiac, and a bunch of other things my helpful facebook friends have told me to pursue.  When these kids were diagnosed with autism, I had no idea that nailing down a PHYSICAL problem would be even more complicated than the constant med changes/ IEPs of autism!

 

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