Helping Parents be Open to testing

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lorrane
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31 Oct 2017, 3:59 pm

Hello, I've re-writting this post too many time already lol. So I've decided to just get straight to it. If more context is needed, please ask, I will provide it.
I have a 5 year old stepson (SS), I have helped raise him since he was 6 mo. old. His mommy is a great mom. I have always suspected something was off about SS. Long story short, my husband and SS's mommy wont get him tested. They don't see any issues. I go up and down with how much I want to push the issue, because no matter what I do - because I am the step mom, I'm judged. it's as though there's no possible way my concern can come from my heart, its got to be because I "want" something to be "wrong" with him because he's not mine, like some how it makes my bio kids better. (This is what has been suggested to me by others about what my husband and SS's mom's perspective may be.) For the most part, I have let it go. But it just kills me that SS is having problems (behavior) at school again, his second school by the way and he's only in kindergarten. He's being sent home with bad boy notes almost every day. And I'm worried that he will start to internalize all this "bad boy" stuff. He is difficult at times yes, but HE IS NOT A BAD BOY. I tell my husband he needs to tell his teacher about all his little things - like if the classroom is too loud, he can't focus, or to confirm with him he understands what he should be doing because he wont ask if he doesn't understand he just will do something else, or if its toward the end of the day, he may need a little break, a quiet time to do what he pleases to rejuvenate so he can do what's expected the rest of the day. But he absolutely avoids talking to the teacher, makes shallow attempts, I think to shut me up, but with no real intention. And I'm not sure why his mommy won't do this, other than being in denial and she's scared the teacher may say something she doesn't want to hear. It's hard for me to believe that even in denying that he may be on the spectrum, that she doesn't at least see these situations that bring out reactions in him.
What makes me nervous, is he goes to private school, and private schools are not typically aware of what to look for in AS, they just label him as bad and keep sending notes home so they can kick him out. Since they won't take my word to at least look into getting some support for him - my only hope is that someone at school will mention it to his mom. But like I said, most private schools don't have personnel with experience in AS, not even a familiarity. And every where else I've tried to get help, they always want to speak to the parents or need a referral from his pediatrician, whom I've also talked to about my concerns and she completely shrugged me off. SS is just so slight for lack of a better term, in all of these behaviors, that someone who does not spend a lot of time with him would not notice anything, or would just think he's a brat and doesn't listen.
Should I try to make something happen somehow? Anything I can think of feels like I'm going behind my husband's back so I really am between a rock and a hard place. Do I risk more fights with my husband and keep bringing it up or should I just continue to hope that someone else also notices it and is brave enough to bring it up to his parents? And the problem with this is, the time! The sooner that better for getting help. And I know SS would improve a great deal if we got him some extra support, he is not severe at all, just very socially awkward, doesn't pick up on social cues, he's very fact oriented, if you aren't telling him in the form of a fact then he probably won't get it, he has some sensory issues, ect. but its all very minimal. He just needs a little support, and we do as well, because we are at a loss for how to discipline him. He doesn't seem to understand cause and effect, or behavior and consequences ect. Not even positive reinforcement works because he just constantly asks for treasure. (I give them little toys or stickers, bubbles ect. when I see them doing something well and I call it treasure because I keep it all inside a treasure chest we keep in the living room.) He doesn't understand the concept of how you get treasure, he just asks for it and gets upset when I say no and explain what the treasure if for. Anyhow, what will it take to get his parents to realize something is up? And is there anything I can do to help move the process along?



misstippy
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01 Nov 2017, 5:49 pm

I know with most people I know who have kids on the spectrum, one parent was always more clued into what was going on than another. I know with my kids, it was like that... but it was the teacher bringing up concerns that actually made it so we could take steps to get on the same page and do something. You are in a difficult situation since you really can't just take measures without the blessing of your husband or his ex wife. I'd just continue to bring your concerns up to your spouse and maybe share articles or other educational information that backs up why you think it's worth a deeper look.



lorrane
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Joined: 31 Oct 2017
Age: 34
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01 Nov 2017, 10:42 pm

Thanks so much for your reply misstippy :). Interestingly enough, just today my husband was able to talk to SS's teacher. She explained how he is having a hard time making friends and how he is socially awkward and just doesn't know how to relate to the other kids. She says he pokes kids and yells a lot. Which I can totally see him doing. He has a hard time understanding people's personal space and will still touch other's faces and even try to put his fingers in their mouths. And I think the yelling is just because he gets excited, could be a type of stimming maybe? Because its usually not words he yells, its just noises or words he has made up. (At home I remind him that we only use words with meaning so others can understand us, not made up words.) She also explained how he doesn't do what he's asked and just kinda runs around the classroom doing what he wants, sometimes throwing tantrums and more yelling. He acts the same at karate. She says most days she has to separate him from the rest of the class and work with him individually while the other kids are reading or whatever. My husband said that she didn't mention any thing that she does in particular to stop the behavior, only to separate him and give him one on one attention - which I think could be reinforcing the behavior really.
So I don't know...is the behavior and not making friends connected? We would know for sure they are connected if we could get a professional opinion, but without that....assuming there is no other issues, it seems like not making friends and being unruly in class are two different things...and good ol' fashion discipline is at least in order to try. We aren't really in favor of spanking but at this point its the only thing we haven't tried. (We say to eachother all the time..."one more time, and that's it, he's getting a swat on the bottom!" hand in air lol but we just havn't been able to do it.) So we continue to talk until we are blue in the face. I know SS's mommy has been doing play dates with some kids from his school, I don't know how that's been going though. I'm sure my husband was overwhelmed and needs some time to process the convo.
In retrospect, now some hours later I shouldn't have said anything after listening, but hearing someone else also notice his social difficulties I said I was glad someone else is noticing the same things I notice and that I don't like being made to feel like I'm a bad mom to him for expressing concern - I'm sure all he heard was "I told ya so." He snapped back saying "I don't want to have this conversation with you" as he walked in the kitchen. So I just dropped it and we went on about the day.
For years, I've been emailing him articles and telling him about things I read and podcasts and webinars I listen to - but he just doesn't want the info. The first few months after I finally mentioned my concerns, I suggested he talk to SS's mom to see if she knows anything about autism, or at least if she has noticed anything different in SS's development (he didn't talk until he was 3.5 for instance, how little he ate and couldn't use utensils and had a very hard time sleeping to name a few more.) He said when he asked her about autism that she said those kids are retarded and SS is clearly not retarded. Back then I thought wow, ok obviously from that reaction she has no idea what autism is and that it exists on a spectrum. But for sometime now, I suspect he never said anything to her, and that was actually his reaction. So he very well maybe the resistant one, I have no idea where she stands. She and I don't have any issues between us, but we definitely don't have the kind of report it would take for me to effectively start a conversation about this. She would probably tell me to mind my business lol, and I guess she wouldn't be completely wrong. I just hate seeing my sweet boy be so misunderstood :( I can't help but feel a responsibility to keep pushing, gently...but to keep pushing because I very well maybe his only advocate.
I want to speak to SS's teacher myself, ask he outright if she thinks we should pursue some outside evaluation. And if so, PLEASE for the love of God tell his parents that!! !! I would be very frank with her, that I need them to hear it from someone other than me. Because even other family members that notice things - only dare mention it to me and will usually end the convo by saying "nice" things like "oh but he's still young, he will grown out of it" or "he's just got his own unique personality". So I really feel alone in this battle for my little guy and my conviction is constantly going up and down, because at the end of the day...I'm not a specialist, I don't have any first hand experience with AS, all I have is my mommy gut, books/google/youtube, random convos with parents who have kids on the spectrum and sites like this. I spend a lot of time telling myself maybe I have littered my mind with so much that I am only looking at him thru this "AS magnifying glass"?? There is so much about SS that IS completely typical of kids his age, I would even argue he has more typical characteristics then anything else. And just like nuerotypical kids are all different, so are kids on the spectrum and they are all unique in how autism effects them so it's not as though I can find a sure fit example to present to my husband. Even with the 4.5 years I have dedicated to learning about AS and all that surrounds the topic...I just can't be sure so how could I convince my husband to take a step toward the unknown?? That I am sure enough to feel that an evaluation couldn't hurt that's for sure.
Maybe the lack of social understanding, the extreme pickiness in food and drinks, the inability to follow directions, the constant questions that he knows the answer to (he will watch his dad walk into the kitchen then turn to me and ask where did dad go?), correcting adults, narrow interest in dinosaurs/lizards/bugs, the need to always have a toy in one hand (a toy in which he very rarely plays with, he just wants to hold it.) and just the general odd play - for instance he would rather throw the basket ball in the air rather than try to get it in the hoop...maybe all of this is nothing and it can be explained away. But then I'm still left with my mommy spidey sense. Sure, individually these things are not a big deal, but altogether, they paint a picture and coupled with the trouble he's having in school he is sure to fall behind if we can't figure out a way to help him get with the program. And even worse...he start to get depressed and insecure, my mind just travels with what the future could bring if this goes unexplored.