Feeling alone as a gentle parenting mum of AS kids

[Piglet68]

I've recently recognized that my kids have AS, and we are in the process of pursuing an official diagnosis. In the meantime I've picked up some books about parenting AS kids, and visited a few online forums for AS. 

I've spent most of my parenting life here on MDC and in my "real life" attachment parenting, La Leche League-ing, unschooling communities. I basically avoid mainstream groups since we have so very little in common with respect to our parenting. But in seeking out AS communities I'm finding myself landing squarely in mainstream-land. I can handle the school stuff, but its the discipline stuff that is really making me feel like a lone Gentle Parent in a world of time-outing, manipulating, carrot-and-stick wielding parents. 

I'm hoping I can connect with others on this forum who parent their AS kids without resorting to such techniques. I'm still trying to figure out if I need to change anything - up until a few weeks ago I felt my parenting style was working well for my kids, but now I see that certain behaviours are not going to be "grown out of", despite improvements over the years, and I'm looking for strategies to better support them. Maybe I should just "keep doing what I've been doing" (they will be provided with appropriate therapy programs outside the house)? But then there are days, like when DS has a total meltdown because I won't buy him a new video game, and I wonder if there is something more I could be doing to help him? Using punishments and time-outs is simply not an option for me. It feels so wrong on so many levels.

I dunno what to say, other than I'm feeling rather alone, lost in a mainstream world, and am hoping to connect with like-minded mamas dealing with issues such as meltdowns, tantrums, rigidity, public rudeness, etc. Can we share gentle strategies for dealing with these behaviours?

[KimPM]

I've found the books by Stanley Greenspan helpful.

[Village Mama]

I am another homelearning mama of two boys... also mid assessment ( somewhere on the spectrum, either aspie or NVLD but leaning more towards the Aspergers end of things) We are also on the Island .

I have been struggling with a lot of the same things. I like to think of myself as a "middle road" kind of parent. We are far from mainstream , but not at all radical unschoolers. I have had to use parenting techniques that I never ever thought that I would resort to . Think visual schedules and timers and such. My boys are a little bit older than yours... we are in no mans land as far as outside help goes right now. The child development centers only deal with under 6s and funding isn't available through the homelearning group until we get a full autism diagnosis.( the wait list up here sounds like it may be 18 months?) Frustrating because we have a full psychiatrist report and an OT assessment done privately that both point to Aspergers.... all we need is the ADOS/ ADI ( I think that was what it was called.... the two screens used for autism anyhow) They will provide a couple of OT sessions and some tutoring under a high incidence grant.... usually here in BC all of that stuff is provided through the school system.

As my boys get older , I see that they are NOT growing out of certain behaviors. The scattered focus is just brutal... as hormone shifts start to happen behaviors just intensify. I am pretty desperate to find solutions and help for executive functioning issues. I am just doing spreadsheets of " lists" for around the house that we can laminate and they can check off... just to take the pressure off of my poor brain and try to encourage more independance.

It is tricky when you have identified as being part of the gentle parenting community. It almost feels embarrassing for me to have charts and timers and things in my house. I feel a bit alienated from both sides. I was going to write you a PM before just to let you know that we are here .... doing the same thing!

[Piglet68]

Thank you so much, Village Mama, for sharing your perspective. I have PM'd you with a more detailed response. One of the things I've found confusing about all this is that my children have not changed since I figured out they have AS, but it has caused me to question whether I am doing the right thing by my children by applying principles that are based on the assumption that they will grow and develop normally - at their own pace, for sure, but following the same trajectory. Now I wonder if some of their unique challenges may be going unaddressed right now. On the one hand I've seen improvement in both of them over the years, undoubtedly. OTOH, they are getting "too old" for certain behaviours, even if they are occurring less frequently, and this is causing me to wonder if there isn't more I could be doing besides just giving them the freedom to be themselves and grow at their own pace.

Kim, thanks for the Greenspan recommendation. I looked up his book on autistic kids on Amazon but was not sure whether this Floortime method applied to older kids. Is his method just for little ones?

[KimPM]

Originally Posted by Piglet68 

Kim, thanks for the Greenspan recommendation. I looked up his book on autistic kids on Amazon but was not sure whether this Floortime method applied to older kids. Is his method just for little ones?

The Engaging Autism book is interesting. He addresses the whole range, from non-communicative to Aspergers. I felt that most of the book didn't apply to us, but there are key sections on how some older children - even if they have excellent verbal skills (eg. those with Aspergers) - may still not have mastered nonverbal communication at the early age they were supposed to master it. He explains how this lack of understanding of nonverbal communication affects self-regulation and emotions even as they get older. He also have some specifics on discipline techniques, and it might apply to kids older than toddler age, but probably younger than puberty age. I like Greenspan because he's always trying to keep it as gentle as possible, but with the view of the reality of ASD and other disorders. I'm still working on his other books.

I think it's possible to do floortime with somewhat older kids (less than puberty age?), though I'm certainly not the expert in it. Just learning it myself.

[rainbringer]

The Explosive Child by Ross Greene fits well with an AP approach.  It may not have much that you are not already doing, but gives you an "expert" to refer to if therapists question your approach.

I find as dd gets older I am moving towards using rewards a lot.  She struggles with so many things and while there may be other ways to encourage and motivate her, at some point I am just not able to come up with ideas fast enough and am getting worn out - so rewards make it easier on both of us.

Schedules, visual and written, timers, social stories can all be used within an AP perspective I think.

Some other books that may help -

The Incredible 5 Point Scale

Out of Sync Child Has Fun

Social skills curricula by Michelle Garcia Winner

I love All Children Flourishing, his method is less AP I think but has been very positive and helpful for us.  I have also modified it a lot to fit our family.  I think it is possible to use his ideas in an AP way.

Best of luck in finding something that works well for your kids!

[Piglet68]

Thanks rainbringer. I did read The Explosive Child, it was such a disappointment to me b/c we were already doing all the things he said you were supposed to do. But it's a good primer for those unfamiliar with the whole AP/GD thing.

I agree that schedules, timers, etc can all be used within an AP framework. To me it's important that my children understand why we are doing things a certain way, and ideally can get behind it when they see positive results. DS is still too young (immature?) to understand he even has a problem, or to care much about it, but DD is more aware. I just got a bit freaked out by all the behaviouralist talk I was reading (I long ago gave up B.F. Skinner for Gordon Neufeld, lol).

I've been hearing a lot of good things about the Winner book so I will definitely go check that out. 

thanks everybody, I am feeling much better now!! 

[Roar]

Do they have an evaluation scheduled? My best advice would be not to get too far into trying to find community until they get an official diagnosis. A lot of things can mimic ASD but not be ASD. Some of why what you are reading doesn't fit my be family values, AP concerns, but some of it may not fit because it really isn't what your kids need. I'm not saying to 100% push the pause button and stop learning, but I would slow a bit. There are MANY parents of kids on the spectrum on MDC. There are communities out there. You may or may not find them a fit, but you'll know better once you get a better idea what your kids' main challenges are. Ultimately every kid is different and that's where individual therapies and services are so important.

[Emmeline II]

Originally Posted by Roar 

Do they have an evaluation scheduled? My best advice would be not to get too far into trying to find community until they get an official diagnosis. A lot of things can mimic ASD but not be ASD. Some of why what you are reading doesn't fit my be family values, AP concerns, but some of it may not fit because it really isn't what your kids need.

I agree. I took ds to a behavior clinic for an evaluation. We already had an ADHD diagnosis by that point, but his OT brought up Asperger's and we realized that was a possibility as well; we wanted to make sure we were addressing all the issues we could. The evaluation confirmed the ADHD diagnosis but was borderline on Asperger's; apparently the eval team debated this for some time. The DP ultimately felt that due to the fact that ADHD, SPD, and Asperger's have overlapping symptoms, can be co-morbid, and his young age (6y11mo) she could not say with certainty that he had Asperger's. Though she also said that we could use any Asperger's therapies that we thought may help ds.

Eval results.

1. Average to high average ability.
2. Achievement commiserate with ability.

One score somewhere was abnormally low; I think it was part of the verbal SIT-R, a section with “strange stories” where you identify what someone is feeling knowing that the feeling is not what they said (like a person who hates apple pies saying “thank you, it’s just what I wanted” when given an apple pie—why would they say that? because they didn’t want to hurt the giver’s feelings).

1. Mild to moderate pragmatic language disorder.
2. Social developmental delay; in part due to ADHD.
3. ADHD combined.
4. Disruptive behavior.
5. Anxiety (performance and social anxiety)
6. Chronic motor/vocal tics
7. Possible CAPD.
8. Hyperacusis/sensory concerns.

Ds does go to a CBT; she seems to take a lot from "Positive Parenting" and "Love and Logic".

I thought these might be helpful as you may recognize some of the behaviors talked about.

Dizfriz's corner

---

The 30% rule. Probably the most helpful thing that can be given to the parent of an ADHD child.
http://www.addforums.com/forums/show...6&postcount=18

Time Sense in ADHD Children. Very important to help understanding ADHD children.
http://www.addforums.com/forums/show...12&postcount=1

ADHD Children and Point of Performance and External Consequences. Absolutely critical in helping ADHD children.
http://www.addforums.com/forums/show...16&postcount=1

Acknowledgments as way of working with ADHD children.
http://www.addforums.com/forums/show...77&postcount=1

Grieving because your child is ADHD
http://www.addforums.com/forums/show...92&postcount=1

[Piglet68]

I suppose you are right about not rushing into things, OTOH I am trying to get as much information as I can. 

The realization about Asperger's came due to suggestions from 3 different sources (coincidentally they all happened within the same week). When I read Attwood's book I could see that it seemed to fit DS and DD very well. 

Of course if it turns out to be some other diagnosis that will be okay, too, since my primary goal here is to understand my children and why they have the issues/struggles they do. And to get them the help they need to overcome these issues.

As far as the parenting/behaviour stuff goes, an analogy is this: Say you are pregnant with your first child and want to learn about parenting and raising a baby. You go online and most of what you see will be mainstream stuff. But then you discover this whole other way of looking at things and doing things (MDC) and you realize that many of the so-called "experts" have no idea about this philosophy nor all the hard evidence that supports it. Like cosleeping for example.

So I'm this mum who thinks her kids have AS and I'm wondering what sort of therapies or help I can give them and I find myself in mainstream-land where everybody buys into behaviouralism. And I wonder "is there something else?", is there actually a debate or another side to the story that the so-called "experts" don't mention because most of them don't know about it? I guessed that, if there was, I would find out about it here on MDC if anywhere! :)

[Linda on the move]

I have met so many wonderful parents who have special needs kids, including autism. They aren't all strictly AP/ GD, but very loving parents who are trying different things, and reading different things,  and doing the best the can.

When my kids were little, I was very drawn to unschooling. But it just didn't work for them. All they did was fight. So I added some structure and we became relaxed homeschoolers. It's a long story what all happened since then, but they are now both VERY happy in an alternative school.

When I read your post, I feel like you have a parenting ideal that isn't matching your kids, but you are discounting people who do it differently because you are sure your ideals are right.

I really don't know what the right answer is for your child, heck, half the time I have trouble figuring out what it is for MY child. But being open to trying new things and parenting the child that I have in front of me has helped.

As far as the tantrums over the video game, what else was going on? Were you some place that is a sensory overload to start with? Was he over tired? Had he eaten appropriately that day? Were your expectations clear from the start?

As far as "time-outs,"  sometimes the most humane thing we can do of a child with sensory issues is get them away from EVERYTHING and just have a break. One parent might call it a time out, while another parent might call it down time.

Different people define gentle discipline differently. In order to really reach your kids, you may need to modify your definition.

[Roar]

Originally Posted by Piglet68 

Thanks rainbringer. I did read The Explosive Child, it was such a disappointment to me b/c we were already doing all the things he said you were supposed to do. But it's a good primer for those unfamiliar with the whole AP/GD thing.

It might be worth starting another thread just on this topic. I don't at all think Explosive child is just basic AP/GD. Just reading the one book might give that idea, but really there is more depth there if you really dig into the website, talk with therapists and others who have used the method with success. What I've seen with some parents coming from an AP perspective reading the Explosive Child is they may not get how much of the method isn't just about letting stuff go, but about aggressively working on basket B and developing those strategies of communication and negotiation. If indeed your children have ASD then they will have impairments in social and emotional understanding and communication. So, there should be plenty to work on there.

The reason why I pulled this out is because you are asking what are the approaches other than mainstream behaviorism - and this is one of the main ones.

[Roar]

Originally Posted by Piglet68 

 Now I wonder if some of their unique challenges may be going unaddressed right now. On the one hand I've seen improvement in both of them over the years, undoubtedly. OTOH, they are getting "too old" for certain behaviours, even if they are occurring less frequently, and this is causing me to wonder if there isn't more I could be doing besides just giving them the freedom to be themselves and grow at their own pace.

This is a really important realization and a strong reason to pursue evaluations. You don't want to realize this when your kid is into their teen years. It is much, much harder at that point to get started.

The thing with an evaluation is that you should be getting back A LOT more information that just the diagnosis. As no doubt you've heard "you've met one kid with Asperger's, you've met one kid with Asperger's." Kids are really different from each other and each will need a unique approach. You probably won't find any particular treatment or style that is a 100% perfect fit for your child and your expectations. As Linda nicely put it, you really have to look at the kid you've got in front of you and be flexible to try different things. For now I would assure yourself you will find ways to help. You will try stuff that won't work. You will try stuff that will. In time you will keep fine tuning it and figuring out more and more of what they need... and as you figure it out they will mature and you'll have to start all over, but that's the process.

[MommyKelly]

Originally Posted by Roar 

This is a really important realization and a strong reason to pursue evaluations. You don't want to realize this when your kid is into their teen years. It is much, much harder at that point to get started.

The thing with an evaluation is that you should be getting back A LOT more information that just the diagnosis. As no doubt you've heard "you've met one kid with Asperger's, you've met one kid with Asperger's." Kids are really different from each other and each will need a unique approach. You probably won't find any particular treatment or style that is a 100% perfect fit for your child and your expectations. As Linda nicely put it, you really have to look at the kid you've got in front of you and be flexible to try different things. For now I would assure yourself you will find ways to help. You will try stuff that won't work. You will try stuff that will. In time you will keep fine tuning it and figuring out more and more of what they need... and as you figure it out they will mature and you'll have to start all over, but that's the process.

Yes this. I have 4 kids with ASD and my husband has aspergers. They are all completely different and all require different things. My dh wasnt dx til he was an adult. He wished someone would have figured it out and helped him when he was little.

 

[beachcomber]

Welcome to the process of assessment and diagnosis for an ASD. I'm sorry to hear your little ones may be on the spectrum, but there are ways to parent effectively without resorting to mainstream techniques. Stanley Greenspan has some great approaches. There is also the Son-Rise program of intervention which is a polar opposite to standard ABA. On the down side, Son-Rise is generally not covered by insurers as they haven't done effective studies on it's effectiveness.

We're doing modified ABA with our daughter's team but it's working for her. The concept of understanding she'll get a positive consequence for doing an expected thing makes her happy because she understands it. She also understands that if she does an unexpected thing a consequence can be negative, but we manage to allow her some control in that - she chooses and can easily regain things she's decide to remove.

I've found with my DD that she simply does not respond to the standard approach for behavior modification endorsed by most behavior therapists. She handles a matter-of-fact approach well but laying down the law or setting rules in place that seem arbitrary to her just causes her to stick her heels in and rebel. The most important thing that I've found works with her is basic consistency. I show her constant love and am very consistent in my approach and expectations and she understands this well.

I also do my best to manage transitions as much as I can. She can take a lot of change if she knows it's coming but there will still be a behavioral problem as a result. she just needs time to process it and I find being extra gentle and reducing our activity to stay at home or low-key helps more than anything.

The thing I found I really had to do to be effective for my daughter was to throw out labels. I do what works FOR HER. Some of that is very AP. Some of it is less so. We still co-sleep at 5 1/2 which isn't working for me but it's what she needs. We do use a rewards based system to encouage expected behavior and that also works well. It's not bribes if it's done correctly. My kid really needs to understand why and get reinforcement when she does it appropriately. Rewards can come in the form of play time, a special toy or game, simple praise or hugs. It's not always a carrot and stick. I've had to unlearn a lot of my own assumptions, to be frank.

Edited by beachcomber - 6/28/11 at 10:23am