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Kids With Special Needs and Disabilities
This is very helpful, thank you. Yes we have considered other schools but do not feel that changing schools is a good move at this point or 100% warranted yet, and the therapist agrees. He does not deal well with change and has friends at school, so we want to try and make it work if we can. When he first began medication at the end of the school year it improved things dramatically. And we got a huge amount of support from his teachers and the counselors, who absolutely did modify things for him in ways that helped. And we will be working with our therapist and the school counselor to put their version of a 504 in place for him. Is there any reason why, barring the school being uncooperative, that we couldn't hire someone to come into the school to conduct one of these? Do they follow him all day? |
Thank you. I feel the same way about looking back or forward. Yesterday was a day where I got stuck in both, feeling regret and second-guessing every decision I've made for the past 7 years and abject terror for what the future holds for us and our son. It was disproportionate to reality but it just hit me like a ton of bricks after the disaster of yesterday morning. I feel better after seeing someone today. We are meeting with our son's therapist tomorrow. I was able to articulate to her that I need us to be moving faster on the behavior plan, starting the PCIT (which was also new to me, for the expert who thinks I'm an idiot for knowing everything,) and that I need her to guide us on how to best react in certain situations. I don't know where the line is between pushing him too far out of his comfort zone and coddling him. I feel like I've regained some control, both of my emotions and the situation. And that always helps immensely. |
I don't have it all, whatever that means. I live pretty modestly. We make about $150K per year. We save aggressively for retirement. We go on domestic vacations. We live in a $220K house. Losing my husband's income means moving to an older home which will require more maintenance, because you can't really find anything newer where we live for less than we've paid. And I certainly can't quit my job. So I just don't know what it is that I'm putting before peace of mind. I'm living a solidly middle class lifestyle wth two working parents like tons of other people in this country. I'm not buying luxury cars or splurging on trips overseas or bankrolling a McMansion. The one big thing I think would make life easier is upping our budget for a summer nanny. I really feel now that was the way to go. DH doesn't agree. So we are discussing that and I'll be asking the therapist about it. I have also decided to use basically all of my vacation time this summer to focus on this. That way my husband and I can tackle all if our son's appointments together I stead of trying to divide them and compare notes. I don't think that strategy has been particularly effective. |
I don't have it all, whatever that means. I live pretty modestly. We make about $150K per year. We save aggressively for retirement. We go on domestic vacations. We live in a $220K house. Losing my husband's income means moving to an older home which will require more maintenance, because you can't really find anything newer where we live for less than we've paid. And I certainly can't quit my job. So I just don't know what it is that I'm putting before peace of mind. I'm living a solidly middle class lifestyle wth two working parents like tons of other people in this country. I'm not buying luxury cars or splurging on trips overseas or bankrolling a McMansion. The one big thing I think would make life easier is upping our budget for a summer nanny. I really feel now that was the way to go. DH doesn't agree. So we are discussing that and I'll be asking the therapist about it. I have also decided to use basically all of my vacation time this summer to focus on this. That way my husband and I can tackle all if our son's appointments together I stead of trying to divide them and compare notes. I don't think that strategy has been particularly effective. |
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Just a quick comment on using your vacation to attend appointments--
I'm the parent from many, many comments back with the three kids, two with ASD, who works full-time. FYI that I do not use vacation for my kids' appointments; that would basically suck me dry of vacation, and thus make me feel deppressed. Rather, I invoke the FMLA intermIttently for appointments pertaining to my kids' "serious health condition." If you haven't already, you should seriously look into the FMLA. You sound like somebody who needs a vacation (no criticism there!); using it all up for a SN kid's appointments is not good for mental health |
Wait? Do YOU make $150K or do you and your DH make $150K? Big difference and impacts the advice you get. Since you've put your kid in private school and are thinking of a summer super nanny, I'm guessing you alone make $150K and you have a lot more options than you want to consider. My jaw dropped when you said you save solidly for retirement and go on vacation. Many of us can do one but not the other - some can't even do both. We gave up vacation. All I hear from you is excuses for not making changes in your life and wallowing in your self-pity. Normally, I'm very supportive of people who are struggling with their kids with SN but you are so abrasive, touchy and snarky that I find it difficult to muster even empathy for you. I imagine you've pushed people away in your real life as you have on this thread. I hope therapy can help you be a better parent and a better person. |
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In OP's defense, she did say domestic vacations. Maybe she means skiing in Aspen or maybe she means visiting family. But I agree that she's somebody will options, Even if she can't "have it all."
I'm somebody who has been turned off as well, though it does sound like she's planning some positive steps right now. |
NO. We make $150 COMBINED. Jesus. Do you really think I would have trouble paying more than $200/week for a summer nanny if we made $300K? This has been covered several times. And okay, I get it, I'm a terrible person because I won't quit my job, sacrifice my retirement, or give up my minimal cost to drive to a lake for a few days. I'm sorry you've had to give these things up. But O don't think we're at that point yet, and it seems a bit drastic. |
| OP, I still don't get what pisses you off so much. Okay, so you don't want to sacrifice your career, retirement, and the extra cash. Can you sacrifice something else? Can you get a less stressful job for a manageable reduction in pay? Are you willing to make any changes at all? Because it's fine if you don't, but then own it. Your present is the result of the choices you made in the past, and your future will be the result of your choices today. Whatever you do is fine, as long as you get into it with your eyes open. Then you really should have nothing to complain about. |
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Oops--sorry! I mistakenly inserted this in the OP's post--this was my reply:
I think that this would depend on your school's policy. It would be good to learn what their mental health support looks like--do they have access to a counselor, pschologist, and/or social worker? Will they be willing to participate in the FBA process? and would they be supportive of such an individualized intervention--private schools are not required to follow the federal law for special education. I understand your concern about minimizing change and transitions for your son. I also think it sounds like he may need more intensive support and that may not be available in a non-SN independent school. If the majority of his issues occur outside of the home, a behavioral consultant might also be able to help you follow a similar process in an attempt to better predict and understand his behavioral difficulties. The school FBA process will only deal with events and behaviors that occur in the school setting. I really do wish you success and peace--I know these kids are exhausting. I also know how much they are struggling with life and try to remember that--no kid wakes up every morning hoping to have a terrible day, or to hate everything, or make his family miserable. Sometimes I don't know how they themselves get through each day. That doesn't mean that we don't have the right to complain or feel stressed or mistreated or resentful--teachers can feel those things too. I'm just saying we have to try not to take it as a personal affront--it is a disability for these kids, not a choice. |
Okay, thank you. We are meeting with my son's therapist today. I plan to ask her about this FBA, whether she can conduct one, and if not if she can refer us to someone who can. I have a call into the school counselor to ask her about having them work with us on this. No, they are not legally required to accommodate, but they do. I know a couple of older parents whose children have their version of a plan and they have been happy. And yes, I hear you. I usually don't take it personally. I just reached a breaking point, and I know that things need to change. We're working on it. |
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Most SN parents have to make hard decisions between bad options and even worse options. We are all scared and stressed and have financial constraints.
I think people continuing to bash OP is not fair. But I understand that it is frustrating to hear someone complain with seemingly little display of gratitude for the good things that she does have: helpful DH, helpful family close by that will babysit, good job and decent salary and school is going ok. Those are awesome things! More than many people have. I am curious to hear the OP's take on why people have reacted so negatively to her posts. |
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OP, another idea (if you haven't already done it) is to find a way to connect with parents in a similar spot. While Facebook can be incredibly annoying for its perfect family photos/stories, it's also a treasure-trove of specific groups to connect with. There are families just like yours going through issues like yours. I found this with my Mixed Expressive-Receptive Language Disorder (MERLD) group; not even other special needs parents understand the trials and tribulations of MERLD. So it's great to have that safe haven (it's a private group) to bounce ideas off of and find resources. (And vent!) What can be nice about these groups is that you will find people at all different points of their journey, including kids who are out there and functioning great with the right mix of therapy, supports and meds. Good luck! |
I'm really hoping the therapist says they agree with getting the summer nanny. Hopefully that will help your DH understand that you are at the point where you need breaks for your own health. There's no way your DC can get the parental support they need when the mom is over her limit. You need the intervention as much as your son does. I know this in no way compares, but I was highly resistant for a long time to getting a cleaning service, even though there was no time to clean our house with my DH's full-time work, my part-time work and all the kids' activities and therapies. I felt 80% of the cleaning was picking up the clutter, which wouldn't change with the cleaning service. And even more, I was worried that something irreplaceable would get broken after hearing a story here and there of just that. So we would struggle through and our home was always slightly stressful to us because it wasn't the haven we wanted to come home to. I finally gave in and it...I know this sounds silly...felt like it changed our life! I walked into the house after the first intense cleaning, sat down on the floor and cried. It hadn't been that clean and comfortable since we moved into the house 10 years before. Now I can't imagine NOT having the cleaning service. Sometimes we have to stretch the number of weeks in between cleanings when our finances are lower, particulary over the summer when I'm not teaching, but we continue it because it is such a load off us. And they clean around the clutter, so even if I don't have time to get it picked up (which is most of the time), it doesn't matter. I imagine the same would happen on a much bigger scale with having a nanny come in to help. They'd really get to know your son and his needs during the summer, and then in the school months would be a resource for you to go to when you needed breaks or assistance since they're already trained for your son. And your family (thinking of DH specifically) couldn't imagine going back to not having that help for your family. You mentioned that you're aggressively saving for retirement, which is awesome and not many in this country are doing that as much as they should. But what are your thoughts on bringing that level down a little for the next 2-3 years and getting more assistance in the life you're leading now? That money is just as important now, to take away some of your misery, as it is later to support yourself. Not reduce it significantly of course, but a little so you have more freed-up $$ for things like the nanny help. |