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

Archive for the ‘Autism’ Category

Can’t Engage With the World When Kept At Home

Always a crazy balance. Do I bring them places where we’re likely to have a severe double scream fest? Or do I keep them home where we’re likely to have a severe double scream fest anyway because a bored Wilma just pushes all of Fred’s buttons?

The things said about my children:

“maybe you should have left him at home”.
“why does she bring them here if she knows they can’t handle it?”
“they should be living in residential— why does she keep them at home?”
“BOTH her kids act like this—- must be the parenting skills”

and on the other hand…

“they’re scapegoating their kids again— they should have come and brought them (even though there will be hundreds of people)”
“your kids can totally handle this (glad you know them better than we do!)”
“my granddaughter would NEVER behave like THAT!”
“is your son still a retard?”
“why does your son act like a banshee?”

If we don’t come to something, please understand. And if we DO come and something happens, please understand. Sometimes I’m willing to try and sometimes I’m not. For instance if I know certain people will be there and I know it will be a trigger, we’ll stay home, thanks.

 

 

https://www.pbs.org/newshour/nation/a-child-with-autism-cant-engage-with-the-world-if-kept-at-home

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What Is ABA?

Some of you know that both of my kids do “ABA” for multiple hours a week but have no idea what that means. I like this video because it shows a real life example of a child being prompted to put his shoes away, put away groceries, pack his lunch, and walk the dog.

In our house, real life examples are different than this and include playing a game by the rules from beginning to end, having a conversation that starts, flows nicely, and stops, doing math homework with minimal screaming (Wilma), practicing piano with minimal screaming (Fred), riding a bike while paying attention to cars coming out of driveways, going to the store and paying for items, appropriately greeting visitors who come to the door, clearing the table, putting away laundry, sweeping, changing trash bags, etc etc etc. Wilma likes to help me cook. Both kids worked very hard on shoe tying and mastered it. Wilma worked very hard on the dinnertime skill of not interrupting. Fred worked very hard on the dinnertime skill of using utensils and not hands. Many of these things are what neurotypical kids pick up naturally but our kids need extra support. For us, ABA is a structured way to give them that extra support. Fred likes to work for candy. Wilma most recently worked for a little purse from Justice. Both earn money— Fred likes to spend his on hotwheels and Wilma likes to spend hers on virtual currency in the “Roblox” game.

Hope that was a good explanation!

 

https://blog.theautismsite.com/overcoming-struggles-of-down-syndrome-and-autism/?utm_source=aut-autaware&utm_medium=social-fb&utm_content=link&utm_campaign=overcoming-struggles-of-down-syndrome-and-autism&utm_term=5876822&origin=aut-autaware_social_fb_link_overcoming-struggles-of-down-syndrome-and-autism

 

 

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.

 

ABA Update

One of Wilma’s therapists is off our case for good and it’s a welcome relief.  Already have someone else in place a week later.

If you want to work with kids with autism and you’re asked to give 2 weeks notice of an occasional absence, and your job with us is 4 hours a week, you can’t be absent at least once every other week and give less than a week’s notice about two week absences over and over AND complain to your family about our family. (HIPPA anyone?) Don’t screw with my kid’s’ mental health.

Wilma’s other therapist is growing on us and Freds’s therapist is really quite good. Their supervisor is EXCELLENT—- so I think with this change we’re in a good place.

Summer. Autism Doesn’t Take a Break

There are far too many families dealing with similar crapola….. 9:30 pm, both kids are sleeping, and I’m cooking Shabbos because I’m out all day tomorrow. (I wrote this Thursday night).  All of a sudden I hear a sweet “can I come downstairs and tell you something very quickly?” I say sure, but then please go back to sleep. She tells me she has a loose tooth and she wants me to look in her mouth— I had no idea she’d start screaming her head off. She’s terrified it’s an adult tooth. I have no idea whether it’s a kid tooth or adult tooth— I can BARELY get in there— I got a half second peek before she started screaming her head off, waking her brother and then I was treated to another lovely double meltdown right as I’m supposed to be making Shabbos and my husband is out at daf. yay. Full physical prompting up the stairs with a kid who weighs 110 pounds isn’t fun. Guaranteed that when my husband is in charge of getting them on the camp van tomorrow she’ll scream at him that she’s not going to camp and she demands an emergency dentist appointment. If she’ll calmly simply let me LOOK…… but nothing ever happens calmly around here. Autism, thanks for striking again– hadn’t seen ya in a couple of hours.

And…. Well we made it almost to week 4 without getting suspended from camp. Fred will be home with us Monday without his sister. Not. A. Deterrent.

And….

Wilma: “can I call the police department and let them know that fireworks can’t go off tonight because I have daycamp in the morning and I need to sleep?” Me: “put on your fan and let’s hope for the best.”

Every year I say that noise free fireworks need to become a thing. Autism, PTSD, veterans, pets….. there are a lot of reasons not to have big loud bangs after bedtime, yo.

And…. Why is the guy who gets ticked off at my husband that he doesn’t bring our son to synagogue in the evenings (after he likes to be asleep) the same guy who’d be royally pissed off at our son’s behavior if he did?

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I’ve Done All But One. You?

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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