Autistic parenting of autistic kids

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WelcomeToHolland
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19 Apr 2014, 7:56 pm

My husband has always been a go-with-the-flow kind of guy when it comes to our kids too, and he never really seemed as bothered by how delayed they were as I was. I was the one who went to all the meetings and did follow-up exercises from therapy with the kids while he got to be the fun parent, and maybe that's why he was more drawn to his dad when he was young. I'm pleased to say that we have a connection now though.



mikassyna
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19 Apr 2014, 8:31 pm

ASDMommyASDKid wrote:
Does their advice help or make it worse?

Honestly, one of the problems I always had is that they will insist that even if it doesn't work, one should soldier onward, b/c in the long run it somehow will work. If it makes it worse in the short run, well, that is part of the process. Well, how long are you supposed to wait it out, before admitting it does not work? Trying something else amounts to just a variation of the same non-working strategies.

I never got that.


I honestly have no idea. He's changed but whether the change was to a better point than he would have otherwise reached if there had been no intervention-- I honestly don't know. I do not think he's worse off. I do not think he would be as high functioning as he is now if he hadn't had all the therapies. He hated the therapies and the therapists, yet my younger son (who has many of the same therapists) loves those very same therapists, so I know it's not the therapists themselves. But is he happier now or would he have been happier otherwise? I don't think he would be any happier if he had never had the therapies. As a baby even, he wasn't very happy, he was most often inconsolable. I wished I could help him be happier but nothing worked, and maybe I tried too hard to appease him instead of letting him self soothe, and when I finally tried to get him to learn to self soothe it was too late and I made things worse? Well, that's just one theory in a long list of self recriminations. There was always something wrong and he was constantly crying, and I took it very personally. And all his delays were, in my mind, because I was clueless and a bad mother and made a whole series of wrong parenting decisions, and caused his unhappiness. If only he would not cry so much from this unhappiness, then he would learn!! If only it were that simple! What doesn't help is that I feel so out of my league and often so incompetent as a parent when it comes to him. I used to think that as long as I didn't make the same mistakes my parents made with me as a kid, that everything would be OK. But it turned out that that formula just isn't really good enough after all. :wall: :wall: :wall: :wall: :wall: :wall: :wall:



ASDMommyASDKid
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19 Apr 2014, 8:42 pm

mikassyna wrote:
ASDMommyASDKid wrote:
Does their advice help or make it worse?

Honestly, one of the problems I always had is that they will insist that even if it doesn't work, one should soldier onward, b/c in the long run it somehow will work. If it makes it worse in the short run, well, that is part of the process. Well, how long are you supposed to wait it out, before admitting it does not work? Trying something else amounts to just a variation of the same non-working strategies.

I never got that.


I honestly have no idea. He's changed but whether the change was to a better point than he would have otherwise reached if there had been no intervention-- I honestly don't know. I do not think he's worse off. I do not think he would be as high functioning as he is now if he hadn't had all the therapies. He hated the therapies and the therapists, yet my younger son (who has many of the same therapists) loves those very same therapists, so I know it's not the therapists themselves. But is he happier now or would he have been happier otherwise? I don't think he would be any happier if he had never had the therapies. As a baby even, he wasn't very happy, he was most often inconsolable. I wished I could help him be happier but nothing worked, and maybe I tried too hard to appease him instead of letting him self soothe, and when I finally tried to get him to learn to self soothe it was too late and I made things worse? Well, that's just one theory in a long list of self recriminations. There was always something wrong and he was constantly crying, and I took it very personally. And all his delays were, in my mind, because I was clueless and a bad mother and made a whole series of wrong parenting decisions, and caused his unhappiness. If only he would not cry so much from this unhappiness, then he would learn!! If only it were that simple! What doesn't help is that I feel so out of my league and often so incompetent as a parent when it comes to him. I used to think that as long as I didn't make the same mistakes my parents made with me as a kid, that everything would be OK. But it turned out that that formula just isn't really good enough after all. :wall: :wall: :wall: :wall: :wall: :wall: :wall:


I really think you are being way too hard on yourself. Some kids are wired to be very intense. My son cried so much as a baby, too. That's just how some kids are. We tried the self-soothing thing, and it did not work. If the baby can't, the baby can't, you know? We definitely had a developmental delay with that. Sometimes that is how it is. It is not anyone's fault.

It takes some kids a long time to achieve the same skills/milestones other kids seem to do effortlessly. That doesn't make it your fault. Try to hang in there. I wish I had something more productive to say to help.



HisMom
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19 Apr 2014, 8:44 pm

WelcomeToHolland wrote:
My husband has always been a go-with-the-flow kind of guy when it comes to our kids too, and he never really seemed as bothered by how delayed they were as I was. I was the one who went to all the meetings and did follow-up exercises from therapy with the kids while he got to be the fun parent, and maybe that's why he was more drawn to his dad when he was young. I'm pleased to say that we have a connection now though.


Do you believe your hubby is on the spectrum, by any chance ?



WelcomeToHolland
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19 Apr 2014, 8:53 pm

mikassyna wrote:
I honestly have no idea. He's changed but whether the change was to a better point than he would have otherwise reached if there had been no intervention-- I honestly don't know. I do not think he's worse off. I do not think he would be as high functioning as he is now if he hadn't had all the therapies.


This is exactly how I feel about the therapy.

@Hismom; Yeah sometimes I wonder that; he has some signs of Asperger's but he also has some signs that suggest not. I don't know. He's more "Aspergery" than I am though for sure.



HisMom
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19 Apr 2014, 9:09 pm

mikassyna wrote:


Funny, in the beginning of my parenting, I was more like your husband. Then my son developed so many behavioral problems and was subsequently diagnosed as PDD-NOS, I had all these therapists telling me what I should be doing, that I became more like you. I took their advice like a mission, thinking that my more lenient approach was what caused him to develop all the negative behaviors to begin with. I often find myself in a bind because would SO LOVE to be like your husband again, but feel like if I am, then I'm going to be deemed a terrible parent by the therapists/educators/professionals if I'm not following through with their goals/strategies, which makes me stressed out. My son is always angry at me, but then I have to remember he was always angry with me even before he started all his therapy. I can't get any of it straight in my head. I so want to be a good parent, but at this point I often really don't know what that means anymore. :cry:


Awwww... Ok, first of all, it isn't anyone's business to tell you how you should be parenting your son ! Most of us want the best for our children and each of us responds to, and tries to help, our children in our own way. I don't remember where I read this, but your parenting style is a reflection of your intrinsic personality. If you are a laid back, easy going personality, your natural parenting style tends to reflect that, whereas if you are full of "nerves" like I am, that shows up, too. If you push yourself to parent in a way that is in direct conflict with your intrinsic personality, you are only going to stress yourself, and your children.

Secondly, I don't think the only way to help your child progress is to obsessively follow the goals implemented for the kids by the therapists. My son gets intensive verbal behavior ABA and spends a LOT of time at the desk. There isn't enough natural play. Implementing their goals outside of therapy would only have meant more table time. At 4, he would be spending 10 hours a day at the desk if we followed the agency's recommendations. Instead, we did NOT do that but came up with our own goals for him (some of which the agency disagrees with). My husband is a rough-and-tumble kind of guy and he believes in rough play and physical play. He spends the evenings and weekends taking the kid out on long bike rides, walks on nature trails, horse riding, and playing baseball / cricket (although baseball / cricket is all still hand over hand with him). We also put on fun catchy music and dance with him. None of these were "approved goals". But I am glad to say that thanks to his father's "intervention", my son's gross motor skills are almost age appropriate. He can ride a bike, is swimming, can climb trees and "rock walls" and is slowly beginning to play cricket. My husband also got him to lift weights in order to improve his muscle tone (he can now lift 5 lbs at a time, one hand at a time).

Don't let anyone tell you how you should address your son's challenges or help him catch up. If he gets a lot of desk time at "work", he may enjoy your hands-off, happy-go-lucky parenting after "work". And, let us face it -- you ARE NOT responsible for your child's delays or difficulties in catching up. It is NOT YOUR FAULT. Don't be so hard on yourself !



Janissy
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21 Apr 2014, 8:50 am

HisMom wrote:
Secondly, I don't think the only way to help your child progress is to obsessively follow the goals implemented for the kids by the therapists. My son gets intensive verbal behavior ABA and spends a LOT of time at the desk. There isn't enough natural play. Implementing their goals outside of therapy would only have meant more table time. At 4, he would be spending 10 hours a day at the desk if we followed the agency's recommendations. Instead, we did NOT do that but came up with our own goals for him (some of which the agency disagrees with). My husband is a rough-and-tumble kind of guy and he believes in rough play and physical play. He spends the evenings and weekends taking the kid out on long bike rides, walks on nature trails, horse riding, and playing baseball / cricket (although baseball / cricket is all still hand over hand with him). We also put on fun catchy music and dance with him. None of these were "approved goals". But I am glad to say that thanks to his father's "intervention", my son's gross motor skills are almost age appropriate. He can ride a bike, is swimming, can climb trees and "rock walls" and is slowly beginning to play cricket. My husband also got him to lift weights in order to improve his muscle tone (he can now lift 5 lbs at a time, one hand at a time).



Stanley Greenspan's Floortime approach might work in your family. You are practically doing it informally anyway. My husband and I naturally gravitated to the "doing fun stuff together" way which is also happening in your family. I didn't take Greenspan's course, I just read his book. But it gave lots of helpful ways to incorporate certain goals into the more spontaneous play that is happening at home anyway.

http://www.stanleygreenspan.com/what-is-floortime/

Quote:
Follow your child’s lead, i.e. enter the child’s world and join in their emotional flow;
Challenge her to be creative and spontaneous; and
Expand the action and interaction to include all or most of her senses and motor skills as well as different emotions.


I found it works so much better than sitting at a desk and doing ABA repeats over and over.



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21 Apr 2014, 7:04 pm

Here is a tangentially-related (at best) story that my brain pulls when I read the OP.

Once while at the park with my daughter when she was younger, a 10-11 year old girl who I clearly recognized as being autistic started to watch my daughter from across the way. She then approached us, started talking (mostly to me as my daughter didn't speak much) and "playing" with my daughter. Her mom told me she had never ever done anything like that before in her life. That she was usually withdrawn, especially from strangers. My daughter totally tolerated it, and that was unusual for her, too.

Of course, I don't know why she came over, but in my heart I believe that she recognized my daughter as being "the same." I also think she somehow recognized that I was non-threatening. I am not on the spectrum, but I do think I am neurologically atypical enough that I have some sort of appeal to other atypical people. I was once told my a psych patient of mine who was grossly psychotic that I was "just crazy enough to be OK," OK meaning that he did not feel frightened by me. The other alternative I have considered is that I looked at her. I imagine that most people tried to avoid being "caught" looking at her in fear of appearing rude, but I had no such fear. She was a kid I found interesting, especially as I considered what my daughter might be like one day, and so I watched her. Maybe she just found the idea of being seen appealing.

At any rate, it is possible that your husband's potential atypical wiring might give him some sort of "connection." My kids are older now and can verbalize how they feel and they have told me that they know that I understand them in a way that their father does not. However, they are equally connected to their father in other ways and I think they benefit from having both an NT parent and a parent who's wiring is askew.


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