Fathering Autism #5 Asa lies and Priscilla cries

[Sam-I-Am]

Oh, ok. Got it. Just went and researched the video. She received her "official" Autism DX at 2 1/2, and the PDDNOS was at 2. So, she did have it changed quickly after.

My question then, furthering this discussion, is ; how normal is it to receive a dx that young, and not be reevaluated in over 12 years?

It really depends on the state and how the child is doing. I know for us, we are on wait lists for services. While we are waiting, we have to redo psychological testing every 3 years because at anytime, they can be called off the waitlist and they have to be able to provide a psych report that is less than 3 years old and we only have 30 days to do so. In our area, it takes 8-10 months to get into a psychologist to do a report and it takes the psychologist another 2-4 weeks to finish the report. There is no time from being called for their waitlist spot, to get in and then the child has to go back on the waitlist... Once off the waitlist, then you never have to worry about it and Abbie is there.
Maybe her state doesn’t require a current diagnosis to place on the waiver services? Maybe just a psychologist writes off that nothing has changed? No clue because each state is different..

Also, for the federal government, Abbie’s IEP would require her to be re-evaluated every 3 years. This requires a new psychological report to be done. It is a federal law and required for any student with an IEP. Of course, this is just an educational diagnosis, which isn’t completely always seen as a medical diagnosis... It is a complicated world... You can have one or the other or both...

 

[Madferit409]

I know as a parent, even when diagnosed, I would NEVER change my child with autism for the world. I don't want to cure them either. They are who they are. It's not been easy, BUT I love how their brain works. I was having a conversation with them earlier today and the way they responded, I had to stop and think about it. Sometimes it's hard to see the world from their point of view, but at other times it makes me expand on my own thinking and how I see the world. My child has intelligence that I could never fathom, but still will act under their age. Just last night they were watching Blue's Clues while reading a textbook about the Periodic Table of Elements, randomly getting excited over facts in the book. Even if my child was lower functioning I still wouldn't want to change them. I know it's not my choice, but I do have friends with kids all over the spectrum. I wouldn't change them either. They all have their own personality, even if they are 19 years old but mentally act like a 5/6 year old, or a 4 year old that is just learning to walk. I love them and cheer them on the same as my NT child. It's like a person is a Linix living in a iSO world. Should we cure the Linix because it operates differently?

ASD is similar to Down's Syndrome in my opinion... There is no cure. There is a vast verity of varying intellects. There are some people that just have Down's. But there are also some that have ASD, IDD, and other things affecting them. The biggest difference is people with Down's have their "look" where ASD look "normal." They both are happy a lot of the time, but not saying they can't have or show other emotions.

In Abbie's case I feel P hasn't fully come to terms that Abbie has ASD and IDD. I also think A loves to use the autism to get attention for himself. He not only exploits her but autism as well. Them being in a restaurant and Abbie starts yelling and making large stims, someone says something or looks, will confront to "bring awareness" all while using autism as an excuse, when they brought her to an inappropriate restaurant/environment for her needs. I've wondered why they don't have her in things like Special Olympics. I know she does Surfers with Autism, but other than that and JSA... It's all about making her do things in an NT world the doesn't understand or seem to enjoy.

I know my child would go into sensory overload at some of the places they take Abbie, and my child can verbally say "Mom, I'm having a hard time." At Sea World last year we brought a stroller, noise canceling headphones, an iPad, and sensory toys for my child. We had a towel for the child to cover them-self in the stroller with what tools they needed when they were struggling. The child had asked to go to Sea World and we had talked about how busy and loud it would be, but still wanted to go. We got there at opening (10 am) and left at 9pm, they asked to stay for the dance party. They only used the stroller 2 times, one was to leave the park because they were so tired. With the proper supports the child had a blast, and has been talking about going back next this year. They keep asking to go to Universal to Harry Potter World, that is going to take a lot of preparing and figuring out coping skills, and what supports we need to bring/use.

Universal’s DAS system is way better than Disney’s, and the environment is a lot more chill IMO. We did Disney and Universal in April, and when it comes to Disney....NEVER AGAIN. It’s so stressful there, and just not for us. Universal we had a great time at though. HP World can be hectic. I think it really depends on whAt time of year you go. Like obviously if you go during spring break it’s a friggen disaster. They have quiet rooms there on a lot of the rides which was cool. (Disney may have them too, I’m not sure.) I really wanted to do Sea World because I thought my daughter would like it more, but we didn’t have time.

 

[lovesis]

Yeah this idiot literally preys on her. I’m not sure why it’s even a debate. I’ve seen it since day one that he lusts over her. And he keeps saying “summer and Isaiah are like siblings and plus she’s older than him.” Lol what?! What world do you live in that you think a 17 year old man and 21 year old woman can’t have a thing for each other? bleeping idiot.

He replied to a comment and said that Summer wouldn’t be attracted to 18 year old boys. How does he know, and why would he even comment on her possible love life. Maybe she has mentioned she wouldn’t date younger? Either way he shouldn’t be delving into her love life, especially with viewers.

 

[GrammaL]

IMO,I would guesstimate Abbies mental age to be at maybe a 4-5 yr old level. At that age,one can be taught,albeit w many many times of repeating,simple day to day things. She can be taught to clean her space up. She can be taught to brush her hair. She can be taught to do a few other basic things as well. Yes,they will have to be repeated to her to accomplish them,but that is how it works w young children.
I however,as I have stated before,do not believe these will ever lead her to be independent.
Abby is never ever going to be that “typical teen” nor that “typical adult” Unless some sort of miracle,or medical breakthrough happens,her mental state will always be years behind her actual age. Am bothered by the thinking by P mainly that her forever child( yes,that’s what she will always be) will somehow be able to go out into the world and be an independent person one day. Sad,of course it is. But this is the reality. She will always need to have someone to care for her. Whether it is you and Asa now,maybe her brother down the road,or perhaps some other arrangement.

 

[Lunatuna]

I may be wrong, but what I think what they mean by independence is that they want her to do personal care routines on her own, etc : get dressed, bathe, get a snack, etc. This allows for a little more independence instead of having a caregiver constantly over their shoulder. Anyway that is the goal for the child I work with (mentioned before, very similar to Abbie) But if that is going to work out, Abbie needs to be on a strict schedule, along with a picture schedule of what to do. She will never be totally independent, no. But if she is taught and has a schedule, she can go through her whole morning routine by herself if the time and effort where put in. (I mention morning routine as just a starting point).

 

[RocketQueen]

He replied to a comment and said that Summer wouldn’t be attracted to 18 year old boys. How does he know, and why would he even comment on her possible love life. Maybe she has mentioned she wouldn’t date younger? Either way he shouldn’t be delving into her love life, especially with viewers.

You know what, thats true. Matter of fact he said that somewhat recently and I remember thinking he was almost angry about it and was shocked.

Great. Another VLOG to look for lol.

That being said I havent noticed any creeper type footage though. Truthfully, the last few months I felt that there was something between Summer and Isaiah and perhaps they didnt want to address it since since she lived there now.

 

[lovesis]

I may be wrong, but what I think what they mean by independence is that they want her to do personal care routines on her own, etc : get dressed, bathe, get a snack, etc. This allows for a little more independence instead of having a caregiver constantly over their shoulder. Anyway that is the goal for the child I work with (mentioned before, very similar to Abbie) But if that is going to work out, Abbie needs to be on a strict schedule, along with a picture schedule of what to do. She will never be totally independent, no. But if she is taught and has a schedule, she can go through her whole morning routine by herself if the time and effort where put in. (I mention morning routine as just a starting point).

Honestly these are all theories. No one knows what skills she can acquire or not.

 

[GrammaL]

I may be wrong, but what I think what they mean by independence is that they want her to do personal care routines on her own, etc : get dressed, bathe, get a snack, etc. This allows for a little more independence instead of having a caregiver constantly over their shoulder. Anyway that is the goal for the child I work with (mentioned before, very similar to Abbie) But if that is going to work out, Abbie needs to be on a strict schedule, along with a picture schedule of what to do. She will never be totally independent, no. But if she is taught and has a schedule, she can go through her whole morning routine by herself if the time and effort where put in. (I mention morning routine as just a starting point).

Yes!!! I mentioned that in an earlier post as well. Children,especially young ones need a routine(yes even older ones) in order to be Successful. They also need to have boundaries that are reinforced at all times(i.e. no hitting,kicking,etc at ANY time,not just here and there).
I do wish P would stop using the word”independence” and maybe the words “self sufficient”,as you stated when it comes to grooming issues,etc.

And so what if her “real”age is 14! Her mental age is much younger and as such,she should be afforded all that it entails,even if it means decorating her room w Disney characters(just a thought if that is what she relates too) and not what the “average” teen girl has. It should always be what makes Abbie feel more comfortable and NOT what P feels it should be!

 

[Monkey1651]

I think I remember them saying that for them to get guardianship of her when she turns 18 she will have to be re-evaluated.

 

[Hotographer512]

I may be wrong, but what I think what they mean by independence is that they want her to do personal care routines on her own, etc : get dressed, bathe, get a snack, etc. This allows for a little more independence instead of having a caregiver constantly over their shoulder. Anyway that is the goal for the child I work with (mentioned before, very similar to Abbie) But if that is going to work out, Abbie needs to be on a strict schedule, along with a picture schedule of what to do. She will never be totally independent, no. But if she is taught and has a schedule, she can go through her whole morning routine by herself if the time and effort where put in. (I mention morning routine as just a starting point).

I think its a little too late for that.

 

[Monkey1651]

I’ve seen a lot of people say that Abby should have more things like no, stop, help etc on her iPad. In my opinion it would do no good. For one id bet every penny I own she can’t read. And there aren’t exactly pictures of help, or no. Sure there’s a picture of a stop sign, but does she know what that means, probably not. And we’ve all seen it a million times, she scrolls through. There is no reason behind what she picks. She will just hit buttons until she gets a response. She’ll ask for nature valley bar, cart, and bathroom within a span of 30 seconds or less.

 

[Lunatuna]

I guess I worded that wrong. I shouldn't have made it sound like Abbie will succeed if given those tools. I meant that it is a start to see if she would ever be able to do her stuff by herself. My school is constantly working with my student to be more independent on personal care and navigating through the school day. Some things he get and others it is still constant prompting even with the schedule, but it is a goal to have less prompting and guidance. Will he ever get to that point? We don't know but we continue to work on it. Right now we are really working on using the communication devise, but he really has no interest in it at all. He will do what he is told, but he hasn't taken the initiative to use it on his own. Abbie is a little more advanced (she will tell you she wants food and a ride) but she also has a long way to go. I agree with the chores she is doing is meaningless to her right now. They just make her do it. I know with the child I work with, certain tasks seems to be pointless, but if I take the time and explain the reasoning behind them to him, he is sometimes more willing to do it. It may take a lot of explaining many times over for it to click. I do think it helps to talk to him and explain why we are asking him to do certain things. Right now the tasks has to relate to the child. Picking up messes they did is a good chore, but cleaning up a mess they did not do, may not click as well. I know all people are different and what works with my student may not work with Abbie, but trying to give some insight.

I think its a little too late for that.

Honestly, I don't think it is ever too late. I see in a lot of these students that I work with, that they want to learn, they just need to be guided and taught. Abbie is still young, she can learn if her body is capable. But like I said, it has to be meaningful for her and explained why. Will every thing taught be successful? No, but it doesn't hurt to see just how much she can do with the proper tools.

I like Brandi, but what I see when Abbie is putting groceries away is that she might not be seeing the point to it so she doesn't like to do it.

 

[Hotographer512]

I guess I worded that wrong. I shouldn't have made it sound like Abbie will succeed if given those tools. I meant that it is a start to see if she would ever be able to do her stuff by herself. My school is constantly working with my student to be more independent on personal care and navigating through the school day. Some things he get and others it is still constant prompting even with the schedule, but it is a goal to have less prompting and guidance. Will he ever get to that point? We don't know but we continue to work on it. Right now we are really working on using the communication devise, but he really has no interest in it at all. He will do what he is told, but he hasn't taken the initiative to use it on his own. Abbie is a little more advanced (she will tell you she wants food and a ride) but she also has a long way to go. I agree with the chores she is doing is meaningless to her right now. They just make her do it. I know with the child I work with, certain tasks seems to be pointless, but if I take the time and explain the reasoning behind them to him, he is sometimes more willing to do it. It may take a lot of explaining many times over for it to click. I do think it helps to talk to him and explain why we are asking him to do certain things. Right now the tasks has to relate to the child. Picking up messes they did is a good chore, but cleaning up a mess they did not do, may not click as well. I know all people are different and what works with my student may not work with Abbie, but trying to give some insight.

I totally understand what you are saying and I tend to agree but...
Where Abbie is concerned, the evidence in the vlogs suggests that they did not, have not and or do not follow through on what she works on at school or therapy, at least not in a consistent way, when she was wayyy younger.
If they did, it would be reasonable to believe that she would be "further along" at age 14 than she is.
It's just too much, too little, too late as the song goes.
IMO

 

[NeedTeaSis]

Honestly these are all theories. No one knows what skills she can acquire or not.

I guess, technically. However, my nephew that turned two less than a month ago is light years ahead of her. Yesterday, without a prompt he immediately picked up his baby brothers diaper and put it in the kitchen trash can at my parents house. Knew where to go, opened the cabinet door and correctly placed it there, making sure it made it into the can. Again, he wasn’t even at his house. And that took him almost two years to get to(he’s been doing that since my other nephew was born). She’s almost 15. The odds are not at all in her favor to even hit the cognitive ability of a five year old. And here’s the thing, that is 100% ok. That’s her baseline. These parents just need to accept her for where she’s at and be realistic about where she can get to. They’re living in a fucked up delusional fantasy world.

 

[Lunatuna]

I’ve seen a lot of people say that Abby should have more things like no, stop, help etc on her iPad. In my opinion it would do no good. For one id bet every penny I own she can’t read. And there aren’t exactly pictures of help, or no. Sure there’s a picture of a stop sign, but does she know what that means, probably not. And we’ve all seen it a million times, she scrolls through. There is no reason behind what she picks. She will just hit buttons until she gets a response. She’ll ask for nature valley bar, cart, and bathroom within a span of 30 seconds or less.

Yes, those communication devices can be a pain. It takes a LOT of training of what the words mean and where to find it on the device. My student, I believe has too much on his. I can't even find things on it. It is complicated. Abbie is probably pushing all sorts of buttons because what she wants might not even be on there and she is just trying for something.

Words like "no, stop , help" can be taught. You can't just put it on the device and never teach her what the purpose of them are for. She can at least shake her head NO to mean no, but that is usually in the context of "do you want this, or do you want to do that" probably hasn't been taught as "no, I don't want you to do that" It takes a lot of work, and she may never get it. I don't know if my student will ever get it. Now other students in our school understand the use of the device and gets more out of it, but still usually with a prompt of us asking them what they want.

I totally understand what you are saying and I tend to agree but...
Where Abbie is concerned, the evidence in the vlogs suggests that they did not, have not and or do not follow through on what she works on at school or therapy, at least not in a consistent way, when she was wayyy younger.
If they did, it would be reasonable to believe that she would be "further along" at age 14 than she is.
It's just too much, too little, too late as the song goes.
IMO

You're right, if the parents are not on board or willing to follow through at home, what she learns at school is almost useless. I have the same problem with my student. Parents think that the therapists and sped teacher can teach him all things and he will just go home and do it. Um no, they have to carry it over into their home too. Make him do what he is taught at school and such, but no they don't want to put the effort into it. I see the same with Abbie.

 

[MaxsMom]

You know what, thats true. Matter of fact he said that somewhat recently and I remember thinking he was almost angry about it and was shocked.

Great. Another VLOG to look for lol.

That being said I havent noticed any creeper type footage though. Truthfully, the last few months I felt that there was something between Summer and Isaiah and perhaps they didnt want to address it since since she lived there now.

It was Valentines night and Isaiah had his buds over. The room was full of males, and someone commented that Summer should be there because her future boyfriend/mate could be there. That’s when A made his comment about Summers preferences.

 

[jadedandcaffeinated]

I don't think the comments about Asa being creepy to Summer are coming out of nowhere or totally unfounded. I'm a young woman and nannied quite a lot and I look at some of the things he does and it makes the alarms in my head go off for sure. Do I think he's peeping on her in the shower or they're having an illicit affair? No. But I think he lingers a bit too long, crosses the line too often, and has completely unhealthy boundaries with her. Someone mentioned the vid where they're hiking and get into the water, The poor girl was covering her chest the whole time and was obviously worried about her top being see through or showing too much and he just kept filming!! I don't think the situation is as juicy as people want to make it, but if I was Summer I'd be paying attention to the red flags and be cautious.

 

[RocketQueen]

It was Valentines night and Isaiah had his buds over. The room was full of males, and someone commented that Summer should be there because her future boyfriend/mate could be there. That’s when A made his comment about Summers preferences.

Thats what I thought too. Ive rewatched it and it isnt there. Now Im going nuts because I know I heard it, and the tone was awful.

 

[KeepinItReal516]

I may be wrong, but what I think what they mean by independence is that they want her to do personal care routines on her own, etc : get dressed, bathe, get a snack, etc. This allows for a little more independence instead of having a caregiver constantly over their shoulder. Anyway that is the goal for the child I work with (mentioned before, very similar to Abbie) But if that is going to work out, Abbie needs to be on a strict schedule, along with a picture schedule of what to do. She will never be totally independent, no. But if she is taught and has a schedule, she can go through her whole morning routine by herself if the time and effort where put in. (I mention morning routine as just a starting point).

From what I’ve seen on their vlogs, they’re envisioning an Abbie who would be able to pour her own cereal, orange juice, put groceries away, do laundry and vacuum. These are all the tasks they work on they talk about her “path to independent living.” Ain’t gonna happen.

Thats what I thought too. Ive rewatched it and it isnt there. Now Im going nuts because I know I heard it, and the tone was awful.

I saw that comment too.

 

[whyorwhynot]

I wonder if there is a middle ground with regard to the chores--clearly she will never complete many of those tasks "independently" as part of some future "independent living"- but if they are not willing to acknowledge where she really is, maybe it's just more a matter of keeping her busy and engaged with people rather than sitting on the couch rocking? I'm not saying it's ideal to force her into doing tasks that have no learning or therapeutic value for her. I'm in no way qualified to know that. I just think the reality falls in between "we're teaching her what she needs to know to live independently as an adult" (but it's useless!! she'll never be independent) and "we are completely ignoring her and letting her just sit on the couch all afternoon/evening." Even if they can't acknowledge this is why they are doing it.