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Korimom
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14 Mar 2014, 11:47 am

That's where I am. I don't know where life goes from here...my wonderful (frustrating!) 9 year old son is about to be diagnosed as on the spectrum. I don't know where (except it's at the high end...our first psych consult mentioned as, asd, ppd-nos as all possibilities) but I don't know that it really matters? He has "special needs" and as parents we have yet to understand what that means.

My husband is almost certainly an aspie himself though he bristles at the suggestion. All his life he has dealt with people (his parents) insinuating that there is something wrong with him. He's a great guy - I love him. But he parents on a very black and white level - either you are acting correctly or you aren't. Strict and strong discipline. Authority is key.

My 9yo has not fared well in our house. He is angry. Probably with good reason. We have spent his childhood correcting him (sometimes harshly) for things that maybe he can't help or needs (stims like chewing his clothes, tuneless humming, some hand flapping here or there), high pitched giggling, jumping. As a homeschooler I have overwhelmed him with work (that a nt at his level should be able to do easily?) and insinuated that he is lazy. He has four younger siblings that we expect him to get along with and not abuse. He hits them. And kicks them etc. Because his thinking is black and white. Because they don't always understand him or what he wants and is unable to verbalize. He won't ask for help and then he gets into trouble. He acts like an adult in our home and wants to be treated like one. My husband expects him to obey quickly and quietly without questioning.

I'm totally rambling - sorry. I'm just so lost as to what my expectations are supposed to be for the rest of our lives. He does no schoolwork anymore because he no longer believes he can do it. His whole persona is just NEGATIVE NEGATIVE NEGATIVE. As I said before, maybe he has good reason for it, but I can't live like this?? He is the oldest, so how I treat/manage him affects his younger nt siblings. If he doesn't get "punished" for mistreating them (because it was a misunderstanding and he really is often sorry afterwards) but they get "punished" for mistreating him or their siblings - how is that right? how is that fair?

Just reply. If I'm an awful mom, that's okay. I'm so tired and so beaten down. And this is the beginning.....

Kori



ASDMommyASDKid
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14 Mar 2014, 12:09 pm

You are not an awful mom. It sounds to me like you actually have a really good handle on what could be fixed.

The first thing is that stimming like chewing on things and making noises is something that the child needs to do to self-calm, or to wake up a tired brain. We had chewing shirt issues, especially under stress. The best thing is to see what else he will chew on. There are chewie toys. You can even use wet wash cloths or straws, depending on what your son prefers. Given that you are homeschooling, even chewing gum is fine, if he won't swallow it. So if a stim is harmless and non-distructive, even if annoying, let him do it. Social consequences are another issue, and whether your son cares about them, still another issue, but at home that is a non-issue.

Your husband and his parents all sound spectrumy for lack of a better word. It may take time for him to adjust.

As far as the homeschooling goes, do not worry about where he needs to be (or try not to) focus on finding out where he really is and go from there. Depending on his aptitudes he may be on different grade levels for different subjects and will take longer than a year or less than a year to progress to the next. For the subjects he has lost confidence in, start with work you know he can do really well in (say 90%+) and give it to him. Once he has confidence and starts doing the work in earnest, it will be easier. (I am homeschooling my first year, this year)

Your son may have different standards, and different punishment than the others. Others can give better advice on how to manage and explain this. I only have one child.

You can't allow him to mistreat them, but his incentive system may be different, and so punishments that work on other children may not work on him. There may be punishments that would not work on the other kids but would work on him. You have to see. Some of the issues may not be issues of punishment so much as skills. If he doesn't have the skill, he can't comply no matter the punishment or reward.

Edited for stupid grammar.



Last edited by ASDMommyASDKid on 14 Mar 2014, 12:45 pm, edited 1 time in total.

DW_a_mom
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14 Mar 2014, 12:29 pm

Not an awful mom at all. Tired and beaten down - yes.

Where to start? Take care of yourself. It is really hard to take care of an ASD child if you are running on a 1/4 cylinder.

Next, I suggest immediately letting go on the stims, ie the chewing, humming, hand flapping and whatever annoying things he does that don't actually hurt anyone. You will eventually work on channeling those into proper time and place, but first let go. These behaviors allow him to self-calm and to center his thinking. They are a type of NEED, and I was stunned to see how much other things improved when I just let go with these on my son. I basically gave up my entire house to his need to self-calm (my son is an aggressive pacer, up and over furniture and into walls) but have zero regrets; that was an important tool that allowed us to focus on the more important things, like getting him through a school day and keeping him from harming his younger sister.

The education issue is more difficult, and I think I am going to suggest recognizing that at this moment you are not the right teacher for your son, and that you should look into public and private schools to see if there is anyone nearby that will have enough insights into his strengths and weaknesses to get him past the road blocks. He has road blocks that have been missed, and he has given up because of that. If you can find someone able to see what they are and how to remove them, he may be able to get inspired with education again. Giving up and checking out is what my son does when something really is too hard. The trick is to keep things from getting to that point, which of course is not always going to be possible. I don't know how many choices you have in this area, but look at them all and with an open mind, and don't be afraid to bail if you select something and discover it was not the right choice. Instinct will be everything with this; you can't walk with a list of assumptions, or your brain may pick wrong.

My son was diagnosed at 7 and things were really rough in that 8-11 year age rage. These are important but very difficult years. I went nose to the grindstone and focused on trying to figure out and understand what my son needed. And I protected him, sheltered him, so he could feel safe and gain trust. I did what I could to make the world meet him, instead of continuing to ask him to meet the world. And that worked. By 8th grade he was through the struggles for the most part, and I started breathing again (but with caution, because high school is when many ASD kids break down in a different way).

You need to toss every assumption about parenting you've ever held out the window. Stop listening to what the world insists on telling you. Read, read, read, and read, and apply your instincts and what you know about your unique child to sort through and see what is likely to apply to him as an individual. Then focus on that, what he needs, and give it to him, to the extent you can.

In a household of 5 kids this is going to be difficult, and I can't even begin to imagine having to juggle all that I know I needed to do with my son with the needs of 4 more little ones (I just have two children, total). Whatever you can do to reduce your personal work load, DO IT. We all have ideals and goals and this vision of what we want to give all our kids, but sometimes life just flat out tells us, "that isn't really necessary, and you can't do it all." Remember, all the goals and ideals in the world won't mean much if you destroy your own strength in the process; your family needs the best you that you can be more than they need anything else. That can be very hard for us to accept as moms, but we have to. IT IS NOT FAILURE to recognize that you aren't superwoman.

I can't say what sort of future your son will hold because I don't know him, but I am seeing so much amazing success among ASD kids of this generation. My son is a junior in high school who is an Eagle Scout active in the Order of the Arrow, taking honors classes, active in school theater productions, and busy figuring out where he wants to go for college. He has a social life that suits him and he is happy. I invested a LOT in getting there, and had to deal with relatives who doubted me and fought me, at times a school that fought me, and I can't begin to say how many days I thought I was losing it. But it was worth it. All of it, everything I did was worth it. After generations of undiagnosed ASD in both my family and my husband's, I see something in my son that I don't think my own father ever found: sincere pride and acceptance in who he is, burdens and all, and the ability to go his own road without seeking approval from anyone or anything (while at the same time recognizing that getting good grades and pleasing a "boss" help you get what you want from life). Will all that translate into a good life as an adult? We have yet to find out. But I have hope, and hope is good :)

Anyway. I ramble. And need to get back to work. But I wish you the best of luck. Don't despair - we all can relate to different parts of your experience. And you've taken so many important first steps already - don't EVER think you have been a bad parent.


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zette
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14 Mar 2014, 4:49 pm

I have two books to recommend that may give you a different approach to your son:

Lost at School and The Explosive Child by Ross W. Green

I really think Lost at School articulates the approach and philosophy the best and has the best examples, while The Explosive Child may apply more directly to your home situation.



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14 Mar 2014, 8:52 pm

If you are coming here looking for help and open to the possibility that you might be a bad mom, from my experience---you are definitely NOT a bad mom. Bad moms think they know everything, even when their outcomes are not what they want, and are gravely insulted by anyone who tries to give them a different point of view.

Good mom. Who needs some perspective and help. You've come to the right place.


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mamabear78
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17 Mar 2014, 10:10 am

I appreciate your honesty and the responses you've gotten are great.

I completely understand you on the part about how your son has been punished his entire life by you not realizing he had some of these issues. I feel the same way. I've just recently realized that when he's pleading with me in tears about how his getting in trouble makes no sense, that to him it really has made no sense. I thought he was being cheeky. Mom of the year.

I just wanted to write you and say you're not alone. I feel like the worst mom ever as well in particular regard to discipline. But we're both here, trying to get help. It makes me hopeful to read responses and testimonials on here. I'm happy you've joined!



mrsmalaprop
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17 Mar 2014, 12:22 pm

Please don't be so hard on yourself; parenting ANY child is an arduous task, and having a non-NT kid is icing on the cake. My daughter was only recently diagnosed as a teen, having been labeled adhd as a grade schooler (which we now know is common among AS girls especially, this incorrect diagnosis).

I can't say it's been an easy road, but she's doing much better and is starting to carve out a life for herself and learning to engage with other people.

I've been through the raging and crash-and-burn episodes for 17 years now; it will be ok. It may not be what you expect, but it will be ok.
I can second the recommendation on The Explosive Child and I'd also point out Love and Anger: A Parental Dilemma. The latter is a big help for knowing that your feelings and reactions are normal. I recommend it to ANYONE who has kids.

I only started this within the last two years, but finding a supportive therapist who specializes in parenting has been a godsend. She works well with my daughter's therapist to help my husband and me work on ways to save our sanity and be more effective with our Aspie as well as our NT.

Hang in there. And remember: Normal's just a setting on a dryer.
Mrs. :D



setai
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17 Mar 2014, 1:18 pm

My little man is 4 and an only child, so I don't have any advice. I will leave that to the other sage parents. I just wanted to chime in and say that you aren't a bad Mom. Now that you have asked for help on this forum and with a diagnosis, you will find the help you need. My guy just got his diagnosis about 6 mo ago and started special school and ABA in the last few months and it has made an amazing difference.

It takes a strong parent to acknowledge and seek out help.



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18 Mar 2014, 5:32 am

You are a normal mom with every opportunity to turn things around. Especially since you said your son is high on the spectrum, I believe he can turn around quickly if you start researching now. Most Aspie's are gentle souls inside. As others have said, learn much about Asperger's and much about your son, and you will know what he needs.

You can take a break from homeschooling to give time for research and time for his healing. He is different and will always need to be treated differently than your NT kids, and that is not easy but must be done. You might be homeschooling him much differently.

You should probably get him fully tested, especially the educational testing which includes an IQ test. That test was so confirming to me. I noticed that my son could grasp concepts very quickly and retains them well. So why the heck did he hate math so much? I figured he was slow in processing. The IQ test confirmed that. So that helped me relax the number of problems I was giving him. I am afraid that at school they would see that he was not speedy with math and would keep him at a low level. His speed would not improve, and he would be stuck at a low level. If I am certain he CAN do the work, why make him do more? That testing might also show you some areas of strength so you can let him excel.

You certainly have a lot on your hands. Along with others, I suggest you get some help. That could mean a number of things. Counseling for yourself or your family, putting one or some of the kids in school, mother's helper help around the house, etc. I would hold off putting your angry 9yo in school until he can relax some. I could be wrong, but I don't think he would take kindly to the changes in his state of mind. And research the school for fit. Some people on this list have the help their kids need in schools. Public schools in my area do not, although I know one Aspie who became very popular in high school.



Korimom
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18 Mar 2014, 3:06 pm

Thank you everyone! I've read all your responses and (yesterday) came to a place of calm. I read (devoured!) The Explosive Child and am using plan b and really liking the results.

Today we had another appointment and found out that J's CARS score is 37.5. This is much higher than I anticipated and I've had another heart drop moment. But we are pressing on and looking to the future.

I'm sort of speechless right now but I'm sure I'll be around with lots of questions and things.

Kori



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18 Mar 2014, 4:44 pm

If your child was just diagnosed with a terminal illness, it would represent a massive change in your expectations. All of a sudden, your dreams and hopes for him would be dashed, and you would have to suddenly learn to cope with the idea of him not being around anymore.

This is less dramatic. You already knew that your son was wonderful (and frustrating). You probably already had a sense for his strengths and limitations, and now you've got an extra label to attach to him. That's really all it is. Well, actually it's a bit more. The label represents some hope, that there are others out there like him, and people who may understand your situation, and be able to help you. The diagnosis is a shock, but nothing really has changed. Your life will continue on, and I'm sure you'll continue to be a great parent. So while you're reeling over this diagnosis, I'd like to encourage you to take a moment to be excited, all this weirdness you've been dealing with has a label, and is a real thing, and as you learn, you will be able to deal with it more than you ever have been able to before. It's natural to be upset right now. I just want to point out that when you take a step back, and see this from a wider angle, this point in time probably represents the beginning of understanding and improvement in your relationship with your child, and his relationship with the social world. So as you worry about the future, as you probably will, try to enjoy this and be hopeful as well.



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18 Mar 2014, 5:36 pm

I found that as much I wasn't upset at my son's diagnosis, I realized that I still needed to mourn what I will call the loss of a "personal fairytale." We try so hard not to create dreams for our kids, and yet we do. The world seems to want us to, and drives us that way. And then in a moment you realize those dreams aren't happening. You will eventually fill them with better and more appropriate ones, but there is a still an emotional loss there. It seems silly to admit it, but there is. In a way all parents go through that, but it is usually a gradual process, occurring slowly as the child grows up, and not something that happens as quickly as it does when you realize your child really is special needs.

I think one of the little things that hit me hardest was realizing that my son's amazing flexibility was not a sign of a future Olympic gymnast, but the sign of a very really disability (hypermobility). I can go on with that list, but that was one of the more obvious ones.

So let yourself mourn the loss of the dreams. I know they were never real to start with, but they still were there filling our heads.

After that, you get to embark on the amazing journey of discovering your child's true gifts. Not the ones you thought he would have, but the surprising and fascinating ones he really does have.


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