Fathering Autism #24 Pullups, messy hair and dirty feet. Hambeasts can’t parent but they sho can eat!

lovesis · May 20, 2020

PhartBlossom said:
Was looking around at causes of low muscle tone and read this:

Low Muscle Tone: About 30 percent of children with autism have moderate to severe loss of muscle tone, which can limit their gross and fine motor skills. Pain: Some people with autism have very high pain thresholds (insensitivity to pain), while others have very low pain thresholds.

I just read about this, very interesting. They should invest in trying to build her muscle tone. PT like y’all have mentioned. I was looking at products for autism and I would have definitely invested my money into that instead of a mini mansion. So many things Abbie could use to build muscle tone. They could have her do hand squeezing activities, put weights on her ankles, gripped silverwareThey even had a balance activity. Why oh why they don’t focus on these things?

KateK said:
Does JSA take them out much? I saw a few VLOGS where A&P went with JSA on some outings.. to the zoo I think. I wonder if they do take them out if A&P go as well.

Yes they do. Abbie participates in shopping and gardening from what I’ve seen. I have seen Assa and Zilla take Abbie to the school for events. Halloween and Christmas and recently there was another event can’t remember the theme.

Edit

It was the country festival

ABAPQueen1995 · May 20, 2020

@Spilled tea-yes please! - I just wanted to say thank you so much for your comment in the previous thread, that was really sweet of you. I am autistic myself and happy to educate people on what it's like to be that way and how they can help people like me. I made my post here seeing as the last thread has closed. I was so touched by this.

derr1117 said:
hahaha

Is that really him or is it someone pretending to be him?

Jigsy · May 20, 2020

KateK said:
They should be doing all these OT things in this video with her every day. That exercise on the peanut thing is really good for her neck. I dont understand why she can't do all these things at home. Dummer and Becca should be doing these with her instead of hanging on her and booping her nose all day.

I agree with you. There is no reason that Abbie shouldn't be doing these things everyday.

alotdizzy · May 20, 2020

KeepinItReal516 said:
AnP actually do take Abbie out and about. I’ve seen them take her to the movies, hockey game, volleyball (summer’s) meets, waterparks, hiking, camping, Walmart, Target etc.

There is no expanding Abbie’s “worldview.” You can’t expand on what you don’t already possess.

I don't think I've seen hiking or camping or movies since I've been watching, but you're right I was forgetting stores like Walmart and Target. They do take her places, there are just a few they really harp on - like Dunkin and the post office, etc.

I remember now that they made a point of saying that she used to be very bothered in the big box groceries stores and now isn't as phased, which I suppose is good. I actually remember having an internal debate now over whether or not desensitizing her to something that won't be practical for her future was actually a good thing or not if it upset her that much or not. But there are a lot of things like that I don't feel informed enough to have a real opinion on because I don't have any firsthand experience with teenagers (or anyone) like Abbie. I am inclined to trust that JSA/Brandi know what they're doing and considers it a benefit for Abbie to be going to the stores, though, so if A&P are following through on that good for them. But I still think their style of speaking over her and ignoring her choices isn't beneficial to instilling any sense of "independence" in her.

Gambit · May 20, 2020

alotdizzy said:
I don't think I've seen hiking or camping or movies since I've been watching, but you're right I was forgetting stores like Walmart and Target. They do take her places, there are just a few they really harp on - like Dunkin and the post office, etc.

I remember now that they made a point of saying that she used to be very bothered in the big box groceries stores and now isn't as phased, which I suppose is good. I actually remember having an internal debate now over whether or not desensitizing her to something that won't be practical for her future was actually a good thing or not if it upset her that much or not. But there are a lot of things like that I don't feel informed enough to have a real opinion on because I don't have any firsthand experience with teenagers (or anyone) like Abbie. I am inclined to trust that JSA/Brandi know what they're doing and considers it a benefit for Abbie to be going to the stores, though, so if A&P are following through on that good for them. But I still think their style of speaking over her and ignoring her choices isn't beneficial to instilling any sense of "independence" in her.

JSA probably focuses on it, because it does effect quality of life in a lot of cases. If you have a child with special needs and can’t even go to the store or take care of errands without respite or dividing up the parents, it makes life a lot harder. A lot of parents of kids with special needs are already isolated. Probably not purchasing her own items, but just existing in those spaces will help in the future

Pennylane8150 · May 20, 2020

It really wouldn’t surprise me if when she does go back to JSA that she gets put back to the group and skill set that she was in before they moved her up.

ABAPQueen1995 · May 20, 2020

allthatnutters23 said:
I need to figure out how to private message you to ask where you work because WOW. Please tell me you're in CA?

So AFAIK no grippers were used he did palmar grasp or normal grasp he switches between which to me signals hand fatigue.His OT sucks but I cannot switch because she was brand new to his case and then covid happened. She doesn't even email me what to have ready for his teletherapy. So annoying.

For his writing - are you using any grippers with the pencils? No

If no, or if just basic ones, try a CLAW or a Twist-n-Write (although this one might be a bid advanced for him yet). NuMuvs aren't bad either, but they are a little bit pricier and not as attractive to kids, I find. I like HandiWriters, too but tend to use them a little farther down the learning-to-write street.- Girl I am on it.

Regarding cutting, what kind of scissors are being used? Regular safety scissors are used. He will cut correctly but after a while go to using two hands again I said hand fatigue and they said he seems to have normal strength. He is about to be 5. I'
m going to add easigrip to my shopping cart for him/

For cutting material - what kind of paper is he cutting?- so he did a lot of line cutting and squares on regular paper. At home I do a mix of regular printing paper where I print shapes or construction paper. We've even cut playdough at home because he likes to make spaghetti so I thought hey lets use them here

Ialways prefer to use patterns (just simple lines, corners, circles, etc. in the beginning) because it gives an actual visual cue as to where to go next - saves some processing time.- hedoes GREAT and lines but when it is a shape he sometimes doesn't turn ie the circle. Now with mommy OT his squares are getting there as are rectangles. Triangles are for some odd reason trickier for him? The diagonal lines. Circles forget it it isn't working and he is getting upset. I wonder if he has midline issues? I'm spouting shit though because sll of this is google degree since his OT isn't the best she seems taken aback by my questions and again can't even respond to emails what activities to do. We colored for 30 minutes on teletherapy once! He needs a lot of input crashes and jumps etc and she ignores his sensory system.

In terms of holding the paper, I have used a lot of different things in the past - rubber finger tips, sticky tack, tongs (these come in lots of cool colors and shapes to try - you can often get kits with slightly different grips, etc.) All of this stuff can be found online from a variety of different stores - I just didn't know if I was allowed to link stuff.--- this is genius his OT just said he hasn't figured it out and to keep prompting or helping him turn it but I feel he is capable of so much more if the expectations are there. Yes he has some real deficits but he's only 4.... let's not put a cap on what he can do(no IDD) and just shoot for challenging him until he can't? His self care is off the charts this kid dresses, undresses, zips his own including connecting, blows his own nose etc etc
You are a godsend!

I seriously think it's time to get a new OT. She is clearly incapable of doing her job properly. A good OT would have responded to your questions and made sure your son was actually progressing. She should take lessons from the ladies I had when I was his age.

Sam-I-Am · May 20, 2020

Just something to think about, with the low muscle tone and fingers...
We do not know Abbie’s full diagnoses. Even her Speech Therapist hinted that Autism wasn’t her only dx and we can all agree that at minimum, IDD is there (plus confirmed by AssHat himself)...
There are some children/adults on the Autism Spectrum that have unknown genetic deletions. Meaning, the genetics doctors can see a deletion or issue within the DNA but they have absolutely no idea why it is their or how it effects each person that has this...

Gosh, I am going to get a little more personal right now and if anyone knows me, please do not call me out...
My youngest two kids are twins. Both twins have a genetic deletion on one of their genes. One twin, while struggling with writing, has been able to write. He also can walk and has no issues with standing or doing any activities... The younger twin, has always struggled with basic fine motor skills and gross motor skills. It is a “Tone” issue, as we can build strength but the toning is gone. Yes, his fingers resemble Abbie’s (not bending but the knuckles). He actually was approved and received a wheelchair/stroller because he gets so tired, just from trips to the grocery store. The reason he couldn’t get a Manual or Power chair is because at age 11, he still cannot see people and would run right into them.. We knew his limitations and had to push for that piece of equipment because we knew the others wouldn’t work. This child has also been in PT and OT since he was 12 months old. Finally, at age 10, he was discharged from both, not for lack of progress but because they couldn’t do anything else with him. This child also has issues with potty training and had a regression and we are continually working on retraining..

So, I get this a little bit BUT there is absolutely no way I would take the constant laying down. My child was always told to sit when he just got that tired and his muscles started contracting (which we could literally see in his legs) but we never would have put up with the constant laying on the floor...

Again, this isn’t an “excuse” but we have really no clue, exactly, what the genetics doctors have stated. It very well could be a genetic issue..

Jamiebeth · May 20, 2020

therealamylynn said:
I don't understand why they are wasting time teaching her about money. I don't think she'll ever be able to go in a store, walk to an item, take it to check out and know what to do when the cashier says "That'll be $4.25" and Abbie will count out $4.25. Or even understand that she has to swipe her debit card and put in a pin number. It's not ever going to happen.

Her school should understand that too. I don't know why they're putting her through the mechanics of shopping.

I'm surprised she doesn't trip when she walks.

Or smack her head when she flails

lovesis · May 20, 2020

@KateK I realize you were talking about JSA events not at the school. Yeah the only ones I’ve seen them attend are the ones at the school.

Hannah'sMama · May 20, 2020

alotdizzy said:
I don't think I've seen hiking or camping or movies since I've been watching, but you're right I was forgetting stores like Walmart and Target. They do take her places, there are just a few they really harp on - like Dunkin and the post office, etc.

I remember now that they made a point of saying that she used to be very bothered in the big box groceries stores and now isn't as phased, which I suppose is good. I actually remember having an internal debate now over whether or not desensitizing her to something that won't be practical for her future was actually a good thing or not if it upset her that much or not. But there are a lot of things like that I don't feel informed enough to have a real opinion on because I don't have any firsthand experience with teenagers (or anyone) like Abbie. I am inclined to trust that JSA/Brandi know what they're doing and considers it a benefit for Abbie to be going to the stores, though, so if A&P are following through on that good for them. But I still think their style of speaking over her and ignoring her choices isn't beneficial to instilling any sense of "independence" in her.

My go to advice as far as going out in public with someone with extreme sensory issues is to only focus on things that are necessary - going to the doctor, going to stores if respite isn't available, etc. Abbie, however, is living in a two-parent home with access to respite and will never be in a position where she has to go to a grocery store. As far as A&P are concerned, I truly believe they are making Abbie go to places like Walmart and hockey games because a) they're delusional about her lack of future independence, b) they want vlog content, or c) both. In any case, exposure "therapy" is a hotly debated topic and one that many people (including myself) believe does more harm than good.

Elsie · May 20, 2020

Yirca said:
I have man hands, so I shouldn't be talking, lol...but Abbies knuckles look almost arthritic!

But she can clap, hit and pinch like a bodybuilder ...

allthatnutters23 · May 20, 2020

is the moaning, grunting etc IDD or the ASD honest question

lovesis · May 20, 2020

She utilizes her IPad when shopping. Wish they would show how that works.

Sam-I-Am · May 20, 2020

lovesis said:
She utilizes her IPad when shopping. Wish they would show how that works.

It is a talking app...
They have downloaded all her favorites onto one of the pages and labeled it McDonalds. Then it has pictures and she click on the picture and it will speak what she wants (they set the picture in and then type what it is, then they can choose for it to speak the word that they typed)... It only works with a lot of background work, which Asa just leaves out...
Personally, I have done this same thing, for one of my twins. He is the older twin and has extreme anxiety that effects his speech. He will clam up and not speak (he also didn’t talk until he was 5 years old and got on the right medications and had a ton of speech therapy, since he was in the NICU)... Yes, anxiety can effect speech and is something I have always thought about with Abbie..

ImNosy · May 20, 2020

Isaiah’s sarcasm in the beginning is hilarious.

Msbullwnkl · May 20, 2020

I feel like her fingers look that way from her stimming with flicking her fingers. But I also wonder if she has some connective tissue disorder (like EDS) when she walks. Her hips look so painful and "loose."

derr1117 · May 20, 2020

Saw tonights vlog on FB...another snooze fest. Laundry and dinner.

Maidengirl · May 20, 2020

https://www.facebook.com/Tonight's vlog (from Facebook) 20.5.20

therealamylynn · May 20, 2020

Cilla's healthy dinner. Meatball subs and fries. Terrible how she can only eat a very small amount since she's had surgery.

Fathering Autism #24 Pullups, messy hair and dirty feet. Hambeasts can’t parent but they sho can eat!

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