In the last two days (I opted not to work and to have these days be appointment days— so I’d planned on not making any money these two days—- which means I wanted to get DONE what I set out to accomplish)….

I wanted to schedule my next kidney surgery. I wanted to get my painful ear checked. I wanted to have my daughter do her dermatology and eye appointments. I wanted MY eye appointment. Sounds simple enough, yes?

Kidney doc number two referred me to kidney doc number three who I was to see yesterday after her office rescheduled the appointment twice already. I went in thinking she was the surgeon. Nope, she was the nurse practitioner who refers to the surgeon. So who did I see in May? No wonder my old kidney surgeon retired. Anyway, ANOTHER 24 hour urine, another new med, and I have the surgeon appointment on the 22nd of this month. Moving on.

My ear hurts. I have a cold. Feels like an ear infection. Nope, not an ear infection. Just a “retracted” ear drum. Whatever, it’s as painful as an infection, but no meds to make it better. Moving on.

The dermatology appointment was running 30+ minutes behind. Wilma does NOT WAIT. The fact that she is able to wait 20+ minutes these days is a miracle. But she CANNOT do 30. Sorry, Doc is in a procedure. okidokee—- my daughter is already waiting by the car after annoying the whole waiting room with “I wanna go home” 400 times…..and thankfully not yet screaming– I’ll reschedule (for another day I won’t be able to work because I yet again have to keep this on my to do list). Moving on.

Today was eye appointments for myself and Wilma. Of COURSE I went by myself to mine—– she CANNOT wait. Went great. Came home to eat lunch and take a tiny nap before go time—- I gave Wilma the pep talk about how this can’t be a repeat of yesterday— there WILL be waiting, it MIGHT take too long for her liking—- does she HAVE her phone and a snack, etc. We show up and……. they no longer take her insurance. They DID leave us a phone message yesterday but do I look like someone who listens to all my phone messages in a timely manner? If I saw a message from them yesterday I assumed it was a confirmation for today and yeah, I didn’t listen. So I still need to get her an eye appointment. Elsewhere. I still need to take her to the dermatologist. I still need to schedule my next kidney surgery. I still took two days off of my income producing activities to accomplish all of this……. nothing. I’m tired, my ear hurts, I made no money for two days, I have more on my to do list than when I started this two day adventure, and when Fred found out Wilma didn’t even do her derm appointment yesterday HE freaked out and attacked us. How’s 2026 going for the rest of y’all?

Wilma will live at home and has chosen an expensive private school a seven minute drive from home. One of us will drop her off and pick her up each day or she’ll uber or she’ll take the bus. She’s still not feeling ready to learn to drive. Thankfully, the financial aid package has us stretching, but not KILLING ourselves because we’re still KILLING ourselves over hubby’s student loans. She wants to major in English. Hubby majored in English. Happened to be a big mistake for him, but I see her going in a different direction than he did and I’m willing to sit back and see how it plays out. God knows I’ve had about forty seven “careers” in the past thirty years. Life handed me a MAIN career of “unpaid special needs advocate” but somehow I’ve still been making money all these years via school administration, tax advising, babysitting, skin care sales, etc etc etc. ANYTHING I can do to make money but be flexible enough for the four thousand appointments these two have each month. She’s still not confident about being competent on her own with her ostomy care so she’s most comfortable living at home. She WANTED to go away to school to where her bestie goes, but she understands that until mom isn’t helping her with every ostomy change, that’s not a possibility. Without my knowledge she applied to almost every school in the state and got into all but one of them.

Fred will do community college online. He applied to ONE school. We knew he’d get in. I’m nervous about him sitting in front of a computer alone all day long but I’d be more nervous about him attempting to self regulate on a college campus. He still struggles so greatly. Whereas Wilma’s autism has a lowercase a these days, Fred’s has a CAPITAL A. We haven’t needed the police in over a year, though, which is incredible. He’s on seven VERY strong medications to get to the point where we’re only getting injured two to three times a month. I still believe autism does not HAVE to include violence and parental abuse and that there is something other than “autism” going on with him, but insurance covers heavy duty medications, not the deep dive bloodwork needed to nail down lesser known issues.

I haven’t blogged in months. Life is…… well I’m just running around like a chicken with its head cut off. If I’m not running to appointments with the board of dd or the state office of disabilities who helps them with vocational training or to the psychiatrist zoom appointments or the pharmacy or the IEP meetings, I’m subbing for a lot of local daycare teachers. Subbing has allowed my schedule to stay flexible. I simply say no on days I have appointments. If I’m not doing that you can find me cooking, doing laundry, and avoiding cleaning my house. This month alone I’m starting “travel training” through the board of dd where each twin learns about the local bus system and is assessed to see how ready they might be to learn to drive (in my eyes, Wilma is ready— SHE doesn’t feel ready though, and that’s fine). I’m thinking Fred may never be ready but I want professional eyes on him to help decide. Plus Fred is taking a class through the state office of disabilities in career exploration (right now we’re thinking accounting of some sort). Plus the medicaid waiver decided to stop paying for the supplies Wilma’s insurance doesn’t cover (gauze pads, lubricating deodorizer packets to pour into the ostomy bags, etc) so it’s been a game of messaging the doctor’s office and trying to order through DME, etc. Plus there’s the usual “mom I’m about to leak” drama. I was babysitting one night and had to come home to help with a leak…. finding someone to cover for me was a challenge but I did it…. I rushed home and….. nope, “almost” leaking wasn’t a true emergency— she was more than an hour away from a full leak. Life is always……. NEVER what I expected. EVER.

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I’ve started and stopped blogs about 5 times…. trying to keep them private from a certain obnoxious snoop who wants to be part of my life but only if he can insult me and my husband freely. Putting it up on the web itself was too open and out there and for whatever reason I never figured out how to password protect my blog correctly.

But then everytime someone would ask me what’s happened recently with one of a myriad of things going on, I’d resay or retype the same thing over and over. So, I do want to blog, and when I found out you could make a private profile on facebook I was hooked on the idea of facebook even before I figured out there were games on here. And you can write notes just to your friends and call it a blog. cool. ok here we go. read if you want to!

The twin’s 18 month birthday was today! ok yesterday- I’m typing this at 1:00 am.

The main thing happening these days is therapy. LOTS of therapy. Wilma has been in physical therapy for quite some time now. The good news is that she enjoys it, works hard, WANTS to progress, doesn’t mind wearing her foot braces, and for the first time ever TODAY, took 2 un-assisted steps. Her main diagnosis is just simply “gross motor delay” and “hypotonia”. Just physical therapy wasn’t enough— but since she got her foot braces, she’s been progressing at a better rate. ok, she had therapy once a week, I had homework to do with her at home while working part time and being home with my kids full time— so far so good.

Then a couple of months ago after I had confidently stated that Fred would be walking long before Wilma, Fred completely stopped progressing (a couple of months ago). He’s been cruising like crazy since MONTHS before Wilma ever did, but then he never stopped “cruising”… he NEVER let go. When I would take his hand and walk with him and then let go, he would take 7-10 unassisted steps but SCREAM in terror while doing it. Wilma couldn’t take unassisted steps, so I figured at least he was getting closer, but then he got smart— whenever I would try to put him in a standing position he’d go limp in the legs and get onto his knees. He walks on his knees all over the house. Does it hurt? Sure, I’ll bet it does. But he’s TERRIFIED of walking. So for a while I thought it was simple fear. But after a few sessions of Wilma being in physical therapy and Fred kneeing around in the background with toys and the therapist really looking at him she decided to test his feet. Ten minutes before the end of one of Wilma’s sessions, she looked at his feet, measured his feet, worked on his feet, and suggested a certain kind of expensive orthotic mold which would CERTAINLY help him with his overpronating and get him to walk. ok, he overpronates. we’ll order the orthotics, no biggie. So now Wilma has braces and PT and Fred has orthotics. So far so good.

Orthotics gave him more support, helped him overpronate less, and we could see an improvement in his stance… but STILL no unassisted walking. And less and less TRYING to walk. He was getting more and more resigned to wanting to be as close to the ground as possible. Which goes hand in hand with other Fred quirks we’ve noticed over many months— his HATRED of bathtime no matter what the temperature, his insane temper tantrums, his VERY easy startle reflex, and his absolute DEFINITE opinions about blankets and lying down and such— he will NOT lie on his back and he will NOT lie down without a blanket, and that’s THAT. EVERY time he goes on his back for a diaper change he screams. EVERY time he goes in the bath, he screams. We’ve been calling him fussy mcfusspot and singing cute songs about how he’s fussy and such, but FINALLY this week we got an official diagnosis. Sensory integration dysfunction. I read ONE article about it so far (and put some books on my amazon wish list to get soon), and it totally clicks. That’s Fred. There’s a chance he may end up on the autism spectrum but it’s too early to really consider that possibility— right now we just have to deal with the “SID” as well as possible in getting him to TRUST his legs in a standing position, and get him “sensory therapy”. So for kids with severe sensory issues, they do PT and OT…….

So now Wilma has PT and foot braces, Fred has orthotics and PT and OT. With me so far?

Today was Fred’s first OT appointment. As part of his sensory re-training, the therapist put him in a very enclosed hammock and swung him around and around… he was in seventh heaven— I’ve NEVER seen him so calm and happy. The goal with him now is to work with him on standing and reaching for things while standing AFTER doing that sort of work with him. At home we don’t (yet?) have a hammock hanging from the ceiling (there are actually therapy swings you CAN have installed in the home but we rent our house….. not sure yet what we’ll do at home for that)…. but apparently with SID kids, if you brush their skin with a hairbrush, or hold them very tightly for a while, or do something similar, THEN you can take off their clothes, or lie them on their back, or give them a bath or whatever they’re terrified of and resisting. So now we need to brush him and hug him (no problem with the hugs!), and we need to look into special compression vests for him to wear, and maybe get a freestanding therapy hammock swing for the house. There are all sorts of different kinds of SID and with his kind, it has to do with his vestibular system— there’s something very off with his trusting of his balance— his arms are always guarding, and his trunk doesn’t turn the same way another kid’s would. So we’re hoping that PT and OT will help immensely.

And then there’s speech. Wilma seems to be on target…. every day she says something new…. “yeah”, “go”, “gock (walk)”, abba (father in Hebrew for the non Jews reading this), mama, …. “nana (banana)”, etc. Fred, meanwhile, if he’s not screaming, he’s SILENT…. he’s in his own little world with his megablocks or his little people. Take away the blocks or little people and try to gently transition him to mealtime or bathtime? The neighbors get ready to call the police the screaming is so loud. (slight exaggeration). Sometimes he babbles… da da da. ba ba ba. But in general, Wilma babbles CONSTANTLY (she says dagoydagoydagoydagoy all day long…. or digga digga digga— anything with d and g) …. and he’s quiet. My mother in law’s new theory is that he can’t get a word in edgewise because Wilma is talking so much.

So….. right now, we’ve got PT for Wilma (and the braces), PT and OT for Fred (and the orthotics), homework for each of them to do at home, a part time job for mommy that she does at home while the kids are sleeping or while they’re right there playing (haven’t even mentioned hubby here– that’s a whole ‘nother blog post for another time!), and everyone has to remember to eat and sleep. Now I’m nervous that at the next pediatrician appointment, we’re sure to add speech therapy to the mix for Fred.

There’s an upside to the therapies of course—- we do PT and OT in the same place which is RIGHT NEXT DOOR to the BEST park in all of Ohio— so fun. They love the baby swings and fairly soon I’ll be able to slide with them down the slides I think.

I have plenty more to say…. about work, about hubby, about my feelings about how BOTH of my kids having special needs makes me wonder what I’m doing wrong (nothing of course— but I still think about it), but it’s 1:30 am….. so ta ta for now.

From May……. Many of you know that my 17 year old son, Fred, is autistic and struggles MIGHTILY with emotional regulation. It’s been 2 days now since he tried to punch or bite anyone….. so he was upset with Wilma just now and yelled…

“I’m NOT GOING TO BITE YOU! I’m JUST going to give you a few small lacerations!”

and a few minutes later—- he’s CALM— no lacerations. When things aren’t freakishly scary around here, they’re HILARIOUS.

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From April….. Another family went out of town this morning and brought over their guinea pigs last night. We’re piggy sitting for all of Passover. Girls named Fluffy and Smoothie.

Me: “they’re skittish… they don’t know us yet….”

Wilma: “will it help if I make a powerpoint presentation? Will they know us better then?”

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SAT scores are in and Wilma, just for fun, because now she’s decided she’ll go straight to work after high school, is looking up colleges who will accept her score…..

She’s yelling out names of Yeshivos. For those who don’t know, a Yeshiva is a Rabbinical college — only for Jewish males. Yes they might accept her score, but not HER.

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Wilma: “Mom. You’ve had a rough week. It will all be over as soon as we ship him to Siberia.”

She googled how much it costs to ship a human to Siberia. I kid you not.

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From Feb….. I asked Fred to remind me about finding the square root of an imperfect square…. “what’s an imperfect square”? (halfway knowing I’d get a snarky answer)……

Wilma: “A square that hasn’t reached it’s full potential!”

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Fred is doing online schooling in the other room and he’s doing a unit on the importance of free enterprise. They get to choose an entrepreneur to profile I overheard some info about Mary Kay Ash (she’s one of the examples they can choose) and I came running. My butthead son says “I chose Elon Musk instead”.

(if any of you don’t know, I’ve been selling Mary Kay for 23 years).

—-

I made Wilma a pizza bagel and the snark in this house is such that she said….. “thanks, Gordon Ramsey”.

Life of a mom of teens with special needs—– you still have to make money and you still have to do housework but you get all the additional odds and ends that eat up your time. Just now…..

1) emailed the office of Ohioans With Disabilities counselor that I forgot to have Fred sign a form but I’ll do it tomorrow in between babysitting, picking up Wilma and a friend from an afterschool meeting, and getting ready for a wedding

2) emailed the Board of DD Support Admin about 3 things about Fred—- our broken bathroom door (we’ll have a behavior specialist come out, determine that our son’s behavior caused the damage, have the home mod people come out and give quotes, get the landlord involved, etc…….. also gave her info for transportation for his June class……… also asked her to help reach out to another department to piece together something for July and August for him

3) emailed a photo of Fred’s insurance card to his doctor because I took both twins to an appointment this morning and only had one insurance card in my wallet because Fred had gone with my husband to the ER and his card was in my husband’s wallet

4) emailed Wilma’s health form to her CIT job because it was filled out this morning and emailed to us this afternoon

That’s JUST email, (don’t ask me about returning phone calls!) and that’s JUST in the last 20 minutes. Now I have a meeting on skype and about 12 other things to do before bed. Yes, my house is a mess and I’m a frazzled mom— EVERY day has a million little things like this.

Wilma: “I learned how to make 20 kids sit down and shut up.”

(Meanwhile I can’t make HER sit down and shut up…….)

We TRIED to apply for unemployment. When we email them, they simply email us back a way to change the password. Not a help. We can GET IN but we can’t apply.

We’ll run out of money by August without unemployment and his new job starts mid August so he’ll get paid at the end of August. Yeah fine, we can live off credit cards till then but if he qualifies for unemployment we shouldn’t have to.

It just keeps saying….

The information saved in your OH|ID account does not match what is on file in your unemployment account.

Yes he applied for unemployment many years ago and yes he might have said avenue instead of ave or first name middle initial last name instead of first name last name, I don’t know…… BUT…… calling them doesn’t help— they don’t pick up and don’t call us back. Time and time again. So we went in person, calculated a three hour wait, and went home. With our kids who they are, being out on an errand for three hours is darn near impossible. We’ll keep trying to call. Or I’ll send him on his own next time on a day he has NOTHING else to do. He’ll pack a lunch. Good God I hate America.

Speaking of America, I watched the debate. Old man yells at old man. We are DOOMED.

Fred has done two weeks of his three week career exploration course. That’s all he was given this year— they wouldn’t give him a second year of the summer youth work experience program. I have no idea what he’ll do in July or August. He doesn’t hate the course, which is nice. But he only has 3 more days of it.

Wilma loves being a CIT at camp once again and she’ll likely do it again next summer and by then she’ll be old enough to be paid for it. It’s only six weeks of the summer but it keeps her out of the house until 3:30 and away from Fred so YAY!

As for me, I’ve been trying to help hubby apply for work (that’s done now), help coordinate Fred’s summer plans, help coordinate Wilma’s summer plans, deal with behaviors and med changes and psych appts for them, deal with ostomy stuff for her, deal with my own appointments, switching to a new dentist for the whole family, doing laundry, paying bills, cook, and try to run my direct sales biz and babysit once in a while.

Sorry I don’t blog more often, but…. LIFE.

I’m counting. It was about exactly a year ago that I wrote THIS POST about how I count the days between Fred’s violent aggressive episodes. Sometimes we get a day off…. sometimes a week off, and BY GOLLY, we recently had THIRTY ONE (31!!!) days off. A RECORD! Imagine 31 days not walking on eggshells wondering when you’re about to be bitten or punched by a 17 year old who is taller, heavier and stronger than you are!!! That 31 days was SO SO SO NICE.

You know those signs cats wear in youtube videos that say “it’s been 6 days since I scratched my human” and the like? I’ve DEFINITELY been tempted to make Fred a sign— and by the end of that 31 days I would have had that sign blasting music and shooting dollar bills…… but alas…….. the meddy go round must be revisited, I’ve begged the therapist to MOVE IN with us, and on we go.

After the 31 days, we had a round of 9 days, then 5 days, then a bunch of 2 through 6 day streaks. This past Sunday was day 1 again, and tomorrow (Tuesday) will be day 1…. AGAIN.

In our city, med washes just aren’t done for autistic teens. They are done in a city about 5 hours south……. but my other kid still doesn’t apply her own ostomy appliance. Of the 18 steps needed to master doing so, she’s mastered 12 (almost 13) of those steps so far. I can’t be more than a half hour away from her in case of “MOM, I’m leaking!”. Hence, she’s not applying to far off colleges.

So a current med update for Fred. Risperdal, Geodon, Depakote, Straterra, Lexapro, Intuniv, and because the other meds have raised his blood sugar (and his weight by a TON), Metformin. My left boob for a doctor who takes his insurance who will get to the ROOT of the issues and not simply throw psychotropic medications at them! I TRIED to get him a Cunningham Panel (perhaps) to diagnose PANDAS. THE specialist in our area (who doesn’t practice anymore) wouldn’t run the bloodwork because months of antibiotics and weeks of steroids didn’t change his behaviors enough that the bloodwork was worth it to him. So does he have PANDAS? Who the hell knows. But “autism” doesn’t mean that a 17 year old needs to be violent. Look at Wilma—- she no longer beats the crap out of anyone! She’s matured! She has FRIENDS, gosh darn-it! Sometimes, she looks a bit neurotypical if you don’t know what you’re witnessing—- she can walk the neighborhood by herself, buy things at a store by herself……. she’s worked a JOB without a lot of extra support! So Fred doesn’t “just” have autism and adhd. Something else is causing massive violence.

As for Fred, forget far away colleges— he’s not even going to college IN PERSON. IF he does college, it will be online only. Being around people is not his greatest achievement these days. Having said that, online school is going well. He does the work and he’s challenged enough by it. Hooray.

Why am I mentioning college? BOTH TWINS TOOK THE SAT THIS WEEK. ACK!

Judge Judaism NOT by the Jews.

So how’s YOUR Sukkos going?

Emotionally it’s been……. interesting. Fred has been screaming about how if Wilma got an ileostomy he should get one too because they are the same person. Whenever she whined, napped, screamed, or did anything out of the ordinary, he got triggered into panic mode which put him in fight or flight attack mode. Ouch. She was home and out of school for two weeks recovering. He was (and is) homeschooling. It’s been intense around here.

I’ve been busy learning convex versus flat, two piece versus one piece, drainable versus non drainable, Hollister versus Convatec, SureSeal versus Brava strips, etc etc etc. Wilma empties six to eight times a day on her own (the chyme goes into the bag many times per hour, especially after a meal). I change the bag/flange/whole shebang twice a week. Learning how to do it without leaks is interesting. The school nurse is my hero and literally putting up with my daughter’s shit. Sometime in the next year I will teach her how to change her own system. She will NOT want to learn. It will be fun. But I am HAPPY to announce that I am no longer prisoner to her hooked up to an iv pole for half an hour every night. NO MORE COLON FLUSHES!

I lift her backpack onto the bus in the morning and off the bus in the afternoon. She’s not supposed to lift. It’s a rolling backpack so at school she rolls it and has an elevator pass to move between floors. Hoping at the next appointment to get cleared for her to eat nuts, seeds, raw veggies, corn and apple skin again. Or at least SOME of it. She misses salad. I hate peeling her apples— heaven forbid she at age 16 should do it herself.