mom of 2 boys Posted November 18, 2016 Share Posted November 18, 2016 I am so overwhelmed right now! I have two children with autism - a 2 year old and a 5 year old. I am homeschooling my 5 year old, which is honestly the highlight of our day and the only thing that is going well right now. I pulled him from therapy because he was refusing to participate and most of his issues are behavioral and self care skills - things that the school system just wouldn't touch for us, so we gave up on them. I have him enrolled in a gym/swim class on Tuesdays and an art/gym class on Thursdays with a 1:1 aide. On Tuesdays while we are there, I have a respite provider stay with my 2 year old (and a therapist goes to them at that time.) on Thursdays my 2 year old comes with us and 1 or 2 therapists work with him during my older sons class. My 2 year old also has therapy on Monday, Tuesday mornings before we leave for class and Wednesday mornings. Just last week, I found out that my 2 year old also has apraxia, so I am still trying to digest that, and his speech therapist is going to push for more sessions. We also have to do a PT eval for him, increase his private teacher sessions AND he had a private nurse start this morning for his inmunodeficiency. Well, she tried to start and couldn't get the IV in, so now she has to try again next week, and he's already overdue for his treatment. While it is nice finally having a respite provider, that isn't without it's problems. She is extremely opinionated and, although she means well, has no clue what I'm dealing with. She suggested I enroll the children in private school last time (for typical kids, with zero support), she was absolutely shocked when I informed her that childern like mine cannot go to those schools, and today she was giving us a hard time because my 5 year old still needs help in the bathroom. This kid has been potty trained for less than a year, and even that is an absolute miracle! The last thing I need is for someone to tell me that it isn't good enough! Anyway, we live in the middle of nowhere and it was next to impossible to find her. I just don't know what else I can do. The children seem to like her well enough. I'm just always choosing between bad and worse. My two year olds therapists want him out of the house more, so they can work with him in social environments more. I'm all for it, except...when?! I'm going to squeeze it in, but I am just so unbelievably exhausted and overwhelmed all the time. I'm also trying to add a social skills class for my 5 year old. I have thought about enrolling my 5 year old in school just to get some of this off of my plate, but he is doing better at home than he has in 3 years of preschool. I would even use the word thriving, so how could I do that? Anyway, I think I'm stuck with all of this for now, I just wanted to share it with people who get it. Totally open to suggestions though. Thanks for reading. Quote Link to comment Share on other sites More sharing options...
Innisfree Posted November 18, 2016 Share Posted November 18, 2016 Hugs. Lots and lots of hugs. You're right, the respite provider has no clue what you are dealing with. 1 Quote Link to comment Share on other sites More sharing options...
Monica_in_Switzerland Posted November 18, 2016 Share Posted November 18, 2016 I'm sorry you're struggling. Could you possibly put the 2yo into a preschool? Not working for his big brother isn't necessarily a sign that it won't work for him. Just an idea. I would have an honest talk with Ms. Opinions about what is appropriate and not appropriate! Quote Link to comment Share on other sites More sharing options...
OneStepAtATime Posted November 18, 2016 Share Posted November 18, 2016 Ugh! How utterly frustrating and exhausting. I am soooo sorry that the person who is supposed to be helping you is making things harder. Is it possible to have a private meeting, where you politely but firmly explain your position and make it clear that her comments suggesting ANY course of action where your child would be better off back in a standard classroom are not acceptable in any way, shape or form. Make it clear that her help is appreciated, but not her unasked for feedback. :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Miss Tick Posted November 18, 2016 Share Posted November 18, 2016 ((Hugs)) Quote Link to comment Share on other sites More sharing options...
Lecka Posted November 18, 2016 Share Posted November 18, 2016 Hugs! Quote Link to comment Share on other sites More sharing options...
kbutton Posted November 19, 2016 Share Posted November 19, 2016 Do you have a pediatrician or someone who would vouch for you about this being your family's best option? I know that it's hard to find people in rural areas, so my line of thought is that if you have documentation that backs you up, you can show it, and then say that hearing her opinions when they contradict professional so and so is stressful. Maybe it would make it less about you vs. her. I do NOT think that you owe her this--it's just more that it might allow you to use someone else as the bad guy and to keep it from being you telling her to stop talking about it if you think she might huff off and not come back. Otherwise, I would try to change the topic every single time, and if that doesn't work, talk to her and tell her that she's great with the kids, but she needs to stop bringing up the extra stuff. I think sometimes people sense our vulnerability and attack us after what seems like initially helpful interest. Answering back becomes kind of a tar baby situation, but unfortunately, you don't always see it coming, and then you're stuck. You just think, "How nice--this person is interested in x, y, and z" and then they suddenly want to run your life. Hang in there! 1 Quote Link to comment Share on other sites More sharing options...
PeterPan Posted November 19, 2016 Share Posted November 19, 2016 Wow, what is with your low level therapists giving their opinions??? Do you have a BCBA supervising them? If you're paying the paycheck, I'd tell 'em to shut up or get out. Like being open to their criticism is letting them do it. My ds still had wet pants multiple times a week at age 7 and still does *occasionally* at 8. Seems to me like you're doing very well for what you've been dealt! You have your kids diagnosed (awesome), you're bringing in help (awesome), you're making sure you get respite (awesome), you have a health distrust of the system (necessary), and you're looking for interventions for new things you find (progressive, amazing, super awesome). You are SO far ahead of where most people are at this stage. You're doing quite well. That IS hard to have two littles with autism! But really, anybody who is giving you stress, just politely say they can shut up or walk. Like you don't need that. Pick who you listen to and push everyone through that person. If you don't have a person who is leading things (a BCBA, a behaviorist) then you don't have someone to pass the buck to. You're always free to vent here. Oh, and about the social trips to town. The social needs for a 2 yo are so slight for that, my lands. He's already going out to something, right? Like Sunday School once a week or those gym trips or something? He could go to the mall and play on the play area once a week. That would be lovely and a good break for you. But really, and this is just my observation, I think sometimes these ABA people have their favorite things, like what they really like to do because it's easy or fun! And when you're getting hit and bit by autistic kids, having something fun to defer to can be really nice! Our ABA person tried to do that. She's like oh, can I do such and such (glorious, lovely) thing with him? I'm like NO WAY. I'm paying you to sit here and do the HARD things. Me, I'm gonna do the fun, easy things. So if YOU want to take him on outtings once a week, then tell those ABA workers tough crunchies and that THEY have to stay home and do the hard work. Divide up what needs to be done and any hard crap that you don't want to do, they do, end of discussion. If you want to do the outtings, you do them. 2 Quote Link to comment Share on other sites More sharing options...
mom of 2 boys Posted November 28, 2016 Author Share Posted November 28, 2016 I'm sorry you're struggling. Could you possibly put the 2yo into a preschool? Not working for his big brother isn't necessarily a sign that it won't work for him. Just an idea. I would have an honest talk with Ms. Opinions about what is appropriate and not appropriate! Thank you, yes, I am planning to put my 2 year old in preschool as soon as I can. He's being evaluated in March to see if he qualifies for September (or the summer session if we get really lucky and there is an opening.) I'm not sure this respite provider is going to work out. She had him in a pull up the last time I got back. It's appalling to her that he needs help in the bathroom one day, but then she puts him in a pull up the next? I'm starting to feel like maybe she's not as qualified as I originally thought :( 1 Quote Link to comment Share on other sites More sharing options...
mom of 2 boys Posted November 28, 2016 Author Share Posted November 28, 2016 Ugh! How utterly frustrating and exhausting. I am soooo sorry that the person who is supposed to be helping you is making things harder. Is it possible to have a private meeting, where you politely but firmly explain your position and make it clear that her comments suggesting ANY course of action where your child would be better off back in a standard classroom are not acceptable in any way, shape or form. Make it clear that her help is appreciated, but not her unasked for feedback. :grouphug: :grouphug: :grouphug: We know her from a church that we used to attend, so I think that she is kind of misunderstanding our arrangement to mean that I am looking to her to be some kind of a mentor to me. I think that I will need to be more clear with her, and I think that I'll probably start by providing her with some educational materials. 2 Quote Link to comment Share on other sites More sharing options...
mom of 2 boys Posted November 28, 2016 Author Share Posted November 28, 2016 Do you have a pediatrician or someone who would vouch for you about this being your family's best option? I know that it's hard to find people in rural areas, so my line of thought is that if you have documentation that backs you up, you can show it, and then say that hearing her opinions when they contradict professional so and so is stressful. Maybe it would make it less about you vs. her. I do NOT think that you owe her this--it's just more that it might allow you to use someone else as the bad guy and to keep it from being you telling her to stop talking about it if you think she might huff off and not come back. Otherwise, I would try to change the topic every single time, and if that doesn't work, talk to her and tell her that she's great with the kids, but she needs to stop bringing up the extra stuff. I think sometimes people sense our vulnerability and attack us after what seems like initially helpful interest. Answering back becomes kind of a tar baby situation, but unfortunately, you don't always see it coming, and then you're stuck. You just think, "How nice--this person is interested in x, y, and z" and then they suddenly want to run your life. Thanks, yeah, I have documentation of him doing poorly in a highly supported class of only 9 children. The school district wanted to just throw him to the wolves and stick him in a regular kindergarten class with some resource room time here and there and pull outs for therapy. If that doesn't make it clear, then I don't know what else would. I think that she looks at me like some naive new parent that just needs a little guidance from someone with more experience. 1 Quote Link to comment Share on other sites More sharing options...
mom of 2 boys Posted November 28, 2016 Author Share Posted November 28, 2016 (edited) Wow, what is with your low level therapists giving their opinions??? Do you have a BCBA supervising them? If you're paying the paycheck, I'd tell 'em to shut up or get out. Like being open to their criticism is letting them do it. My ds still had wet pants multiple times a week at age 7 and still does *occasionally* at 8. Seems to me like you're doing very well for what you've been dealt! You have your kids diagnosed (awesome), you're bringing in help (awesome), you're making sure you get respite (awesome), you have a health distrust of the system (necessary), and you're looking for interventions for new things you find (progressive, amazing, super awesome). You are SO far ahead of where most people are at this stage. You're doing quite well. That IS hard to have two littles with autism! But really, anybody who is giving you stress, just politely say they can shut up or walk. Like you don't need that. Pick who you listen to and push everyone through that person. If you don't have a person who is leading things (a BCBA, a behaviorist) then you don't have someone to pass the buck to. You're always free to vent here. Oh, and about the social trips to town. The social needs for a 2 yo are so slight for that, my lands. He's already going out to something, right? Like Sunday School once a week or those gym trips or something? He could go to the mall and play on the play area once a week. That would be lovely and a good break for you. But really, and this is just my observation, I think sometimes these ABA people have their favorite things, like what they really like to do because it's easy or fun! And when you're getting hit and bit by autistic kids, having something fun to defer to can be really nice! Our ABA person tried to do that. She's like oh, can I do such and such (glorious, lovely) thing with him? I'm like NO WAY. I'm paying you to sit here and do the HARD things. Me, I'm gonna do the fun, easy things. So if YOU want to take him on outtings once a week, then tell those ABA workers tough crunchies and that THEY have to stay home and do the hard work. Divide up what needs to be done and any hard crap that you don't want to do, they do, end of discussion. If you want to do the outtings, you do them. Thank you, I really appreciate your encouragement! I read your reply last week and it really helped me to keep on going. I'm honestly considering letting her go - the problem is that I doubt I'll be able to replace her, and respite care is basically a complete necessity for me at the moment. I'm trying to figure out a way that I can use our YMCA's drop off program as respite care. The problem is that my 5 year old requires a 1:1 aide while he's there, and it's kind of difficult to work it all out when their childcare program is open (but maybe not impossible.) I really need the respite during the day (because my husband helps me in the evenings), but their 1:1 aides are mostly students who are not super available during the day and the childcare closes at 1. I might be able to work it out though. Yes, my 2 year old is already at the Y at least once per week, and I'm already having at least one therapist meet him there per week. I'm going to do a trial run of sending him to the Y this Wednesday (he doesn't normally go then, this is in addition to everything) and see how difficult it is adding that to the schedule. Too bad we can't just move in to the Y! Edited November 28, 2016 by mom of 2 boys 2 Quote Link to comment Share on other sites More sharing options...
Ravin Posted November 28, 2016 Share Posted November 28, 2016 Will the company you are getting respite through train someone if you can find someone willing to train? Did that sentence even make sense? I tried doing respite for an acquaintance with a child with autism. It didn't work out, but if it had, that was to be the arrangement--she found the person, the agency trained them. Other than that, just huge hugs to you. You have a lot on your plate and it's not a respite provider's place to try and mess up your juggling! 1 Quote Link to comment Share on other sites More sharing options...
kbutton Posted November 28, 2016 Share Posted November 28, 2016 I think that she looks at me like some naive new parent that just needs a little guidance from someone with more experience. :blink: :ack2: That's enormously frustrating. Quote Link to comment Share on other sites More sharing options...
amo_mea_filiis. Posted December 5, 2016 Share Posted December 5, 2016 Wow, what is with your low level therapists giving their opinions??? I've found the lowest level techs are the worst! Just last week my son's 3 hour a week behavior tech was diagnosing him, telling me what both of my kids should be doing, and of course commenting on the holy grail of structure in brick and mortar public school. She still can't get my son to comply with any demands, but thinks it's ok to tell me what I should be doing. Oh, and she uses the consequence when she means punishment, and insists it would work. 1 Quote Link to comment Share on other sites More sharing options...
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