"Is this for him or for me?"

[Lecka]

I have never asked this question before wrt my 8-year-old son who has autism, until we moved recently. It is like I am seeing him with fresh eyes in some ways.

 

There are some things "I" want him to do, that I am not having him do, because he doesn't want to.

 

I have never had this before, I have taken what he is capable of into account, but not his preferences.

 

I have felt comfortable with requiring him to do things in order to be able to do things that are basics to me (basically being able to go out in public and go to new places for at least a short time).

 

Now I am crossing into -- if he doesn't want to do some things, that is okay, he doesn't have to.

 

I am wondering how other people have made this transition, if you have ever been more on the side of "come on you're doing it" with a younger child and then start to see you have an older child ready to make a lot of valid choices.

 

My examples are things like: gymnastics. I want him to take gymnastics. He doesn't want to. I'm not making him.

 

This is probably my main example.... in the past I have wanted him to be able to participate in things like gymnastics. So I have made him do things appropriate to getting to that point. And now he can do it, but he can also say he would

rather not.

 

He can also do things like go to church which are a lot less optional though I will work to make it a good experience for him.

 

But it is the same set of skills for either thing (to some extent).

 

But I have no justification now to make him do something like gymnastics, other than that I would like it.

[Guest]

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Edited August 14, 2017 by Guest

[OneStepAtATime]

I did reach that point and in some ways I think some of the things the kids wanted to stop attending made sense to quit.  I don't regret most of it.  I do have some regrets on some of it, though.

 

I think there needs to be some balance and I think sometimes the child loses out on needed benefits even if they may not like participating.  

 

I failed to recognize that with DS.  He was in great physical and mental health when he was younger and was involved in several activities.  Over time he dropped out of quite a few.  He went through a period where he no longer wanted to do pseudo boyscouts or Karate or swimming.  I let him quit.  He also dropped out of our Homeschooling co-op.  Now?  He barely will leave the house and won't do ANY extracurriculars.  None.  I can't get him to go.  He isn't getting the exercise he once did and he had always struggled some with fine and gross motor coordination.  Karate and Swimming in particular had really helped with that.  Now, he just doesn't have the strength and balance he did when he was in those activities.  He also isn't getting the interaction with peers he once did.  It has negatively affected his self-esteem.  He won't even do the academic camps anymore.  I realize that your son is in school so things are different.  I just felt I ought to share.

 

As for DD, DD dropped out of dance and I let her.  I figured it was her choice.   She also dropped out of karate.  Again, I let her.  And swimming.  But that meant that she wasn't getting the same level of exercise she had before.  It has been harder to fill that with just stuff around the house.   She is more active than her brother but she definitely does not have the muscle tone and stamina she once did.  

 

When we started homeschooling I didn't want her to become a hermit.  I forced her to take one thing that was outside our home.  She picked drama but fought me tooth and nail the day we had to go to the first class.  She was miserable the whole drive there and I felt horrible.  She was going into 6th grade.  It felt wrong to make her.  You know what?  She says now, at 16, that it was the best thing I could have ever done.  The skills she learned in drama have helped her in many areas, including public speaking, getting over her profound stage fright, making solid friends and learning how to work hard as a team, etc.  She found that she is good at acting and loves the behind the scenes stuff.  She got really good at props and assembling costumes, too.  She ended up being named the Stage Manager in 8th grade, and even though most of the kids were in High School they listened to and respected her.  She thrived.  And gained valuable life long skills.  She enjoyed every year it was available and wishes that the teacher had not moved away.  

 

When I was 13 I wanted to play guitar.  My parents bought me one and paid for lessons.  I appreciated it.  They didn't have a ton of money.  But they were VERY hands off.  They didn't encourage me to practice or set up specific practice times or help me in any way with structuring my day.  I did not progress much and eventually quit.  I felt like a failure and felt shame for that failure.  And it kind of felt like my parents didn't even care.  It took time but eventually I talked to my mom and realized that my parents did care.  They cared a great deal.  They didn't want to pressure me and felt that if I really wanted it I would put in the effort and if I didn't, they didn't want me to feel guilty and keep taking lessons just for them.  I really really wanted to learn guitar but I needed support and encouragement and help structuring my day and I needed the wisdom of my elders to help me get there.  I needed their help especially on the tough days when my fingers were hurting and I doubted I had any talent and wished it weren't so hard.  I also needed them to help me see that many things take time and a ton of effort.  That just because it isn't easy doesn't mean you can't enjoy it and be good at it.  I didn't know how to articulate those needs at the time and my parents didn't know that I needed them.    

 

I agree that forcing a child to do an extracurricular they no longer have interest in can be detrimental and a waste.  (I'm really glad my mom let me quit ballet.  :)  )  But sometimes maybe you lose something, too.  I'm not saying make him go.  I'm not saying that at all.  I'm just saying keep in mind what might be lost, too.  Maybe look at doing something else that he might gain something from...

[Crimson Wife]

I take a skill-based approach and don't tend to get hung up over the specific activities used to learn the desired skill. I would ask the question, "What do I want the child to get out of doing ____?" and then think about how I can have the child work on those particular skills. Let's say the goals for gymnastics were physical fitness/exercise, following directions, and peer interaction. If my child didn't care for gymnastics, maybe she could do dance or karate or yoga or whatever.

 

[Lecka]

Part of this is that before we moved he had something therapy-esque every day after school. Or almost every day.

 

We have loved the break.

 

Now I have him in speech 2x/week after school. He enjoys this, and he needs it. It is a win-win.

 

I officially told the receptionist today, we are not going to do private OT at this time. My husband agrees on this and doesn't see why I would worry about it. But I have been criticized for "declining services" (by nobody who matters!!!!! But still....) even though he does OT at school. It is not worth taking the time after school.

 

So we have 3 days when after-school is open.

 

But it feels a lot more open now that it is official he isn't going to be doing private OT.

 

And then -- I will find out about ABA in the next month. From what I am hearing, it is likely we can have that be school-based (it is allowed here as long as some picky rules are followed), so that means we would still have 3 days open after school.

 

But I have been undecided about how much will be filled up by therapy, and I need to see what my options are with ABA. Which I can decline if it doesn't fit what we want and the timing..... I just don't know what that is going to look like yet because I am waiting for that phone call.

 

I do think an activity would be really good for him, too. Maybe I am looking for the right activity.

[Lecka]

My only goal has ever been "basic ability to participate" so maybe I need to think about more challenging goals, too.....

[Jennifer-72]

This is probably my main example.... in the past I have wanted him to be able to participate in things like gymnastics. So I have made him do things appropriate to getting to that point. And now he can do it, but he can also say he would

rather not.

 

This is pretty much what I have done. For me I always want the decision to be because ds truly doesn't want to do it and that it isn't being dictated by a lack of skill that I have somehow failed to help ds obtain or haven't broke down enough for ds.

 

For us, it is always about that "just right challenge". My ds is and always has been a fairly agreeable boy and if he is unhappy doing something it is usually because at that point in time he can't, not that he doesn't want to. So I generally think before starting new things 1) what are the prerequisites for this activity; and 2)can I work on those skills with ds outside of the activity. After those points have been dealt with we give the activity a try and I do my best to break it down, and provide the best environment for him to be successful. As long as I am satisfied that I have cleared as many barriers in his path that could be the cause of him not liking something I go with his preferences.

Edited May 11, 2017 by Jennifer-72

[PeterPan]

You have so many important topics here. Can he pursue this with Special Olympics or a different way, rather than going traditional gymnastics? To me the most superficial, obvious problem here is that trying something gives you just maybe like 6 months or a year and then peters out. Yes there are lots of things where parents of typical (and less typical) kids help their dc persevere and get somewhere. I'm cool with that. I don't think an 8 yo with autism probably has enough experience or skills to know what he could enjoy. My ds is really struggling with the social dynamic of gymnastics. Physically he's fine, but socially it's actually very complex! 8 yo boys are complex!! So to me, I think that biases what your ds says.

 

I think I would be more inclined to require it or keep it going or nurture it or work to get him on board if I knew it would lead to some lifelong good. For me, if it's just going to be like hey, we tried that for 6 months, we knew it was gonna be a poor fit, but we did it and can say we did... well what was the point, kwim? To me, I think fitness, sports, being out with people, feeling confident, that can all be lifelong stuff for my ds. I worry about the same thing OneStep found, that we've started well but could lose it. I don't think my ds is a good judge of that. ANYONE in sports has bad days, bad seasons, down times. People who get somewhere didn't get there because it was all just easy and peachy.

 

That doesn't mean all people have to do things the same way. I'm just saying you can have some vision for where this is going. I specifically wanted the social benefits for my ds that would come from being in an inclusive setting. I read research connecting social skills and physical fitness (ie. the ability to hang with that group of boys so you get the social of that group of boys) and I said I WANT that for my ds. He doesn't know he wants that, but *I* want that for him. And I have some other slight ulterior motives. When he works out, I get to work out. That's good for me, good for our family! So even though he's hitting issues with social, he's hitting them BECAUSE I have him in this inclusive setting that I intentionally chose for social purposes. So his balking has nothing to do with gymnastics and everything to do with life being hard/confusing/sucking when you have autism.

 

So I would not enforce something that is not realistic for longterm and is only exposure. I'm not meaning to be rude. I'm just saying I'd really assess there. My ds is pretty good at every sport he tries. Like seriously, he's actually reasonably good. He's in settings that work for him. But if maybe a different body, maybe like ok what our goals, and then go ok is that a goal we could have lifelong, like how does that contribute to a lifelong plan for fitness, for being able to go out, for being able to connect with people...Lots of people with disabilities have lifelong fitness goals! At our Y we have people with CP, we limb deformities, with scoliosis, you name it. So I think you could work backward and think about where you want him to be when he's 18 or 20, how he might like to participate in some kind of activities that are good for him physically.

 

The Social Thinking people talk about that, btw. It was in a list of things, I forget. Oh, it was a list of skills for independence. One of them was your physical health, so things like nutrition, staying active, etc. So that's what I would transfer it to. I don't defer at lot to my ds' opinion, and maybe I'm terrible for that. I give him some choice and sometimes I don't. But the setting, I pick because I'm the one with the long-term perspective about what is good for him. I'm thinking longterm about what keeps him connected with people and feeling good. And that can be different things for different people. I'll probably move my ds over to some solitary, less team-driven sports later. His coach says track would be awesome for him. Individual sports within a team setting for social. Ds struggles in any sort of team-driven field event. He can't follow the dynamic. So he can do a soccer camp a bit and work on skills, but he struggles at the overall game. Basketball, same gig. He's making progress, sure! So to me, things that are not likely to be lifelong, I might do as exposure with a really recreational program. Then think long-term. 

 

Total aside, but I really think the coach matters. Something because more valuable if your coach is a good role model or modeling good attitudes. I really like swimming for my ds. He does both gymnastics and swimming, but what I really like about the swimming is that you don't have to compete and that they learn to overcome themselves. My ds is one of those who can give up. Swimming has taught him to look at a big task, take a deep breath, and go do it! I see it in him when he's in the gym, and it's definitely new. Love it. So to me swimming is one of those things you could plunk him in where he doesn't have to be awesome, won't get held back, can enjoy it lifelong. It has a lot of criteria that could make it a choice that you try and then say well we want you to be active and this is active and what we've picked. And maybe you also try cross-country skiing and some other things so he can rotate and not get bored. 

[Guest]

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Edited August 14, 2017 by Guest

[PeterPan]

Thinking for yourself can be telling yourself to go do it. The ST people emphasized the need for our kids to be able to tell themselves to do things that are a bit uncomfortable. NO ONE goes yippee let's swim hard an hour or let's work out 3 hours. It's hard work! But doing hard work let's you realize you CAN do hard work, that you can do something that was maybe a bit uncomfortable, and that there's intrinsic reward in that.

 

Our kids are not sainted with work ethics and perhaps struggle more than others at telling themselves to do things. Sports build that character and its stuff (the telling yourself to do it when you don't want to) that the ST people are finding is lacking for our kids later. Basics like getting out of bed, dealing with people, doing things that NO ONE wants to do but does anyway. ST spent a long time exploring this need to be able to get over yourself and do things anyway.

 

Lots of ways to get there and sports are a path for us.

[Guest]

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Edited August 14, 2017 by Guest

[PeterPan]

Here's a video of him. Sure I'm proud of him. :)  But I'm more proud of what he has done by overcoming himself, by him CHOOSING to be out there. Nobody could MAKE him do this. He chooses to work out. He has the choice to sit on the bench if he doesn't feel like working out, and it's a real choice, like something we seriously remind him of and tell the coach he has to have. But in general he chooses to work out, chooses to go. And making the choice to do hard things has intrinsic rewards.

 

Just as a note, I gave him the choice about Nationals. His coach thinks he would have done very well, and he chose not to go. I give him choice over flavors of milk shakes, what reward treats he wants, all sorts of things. I let him choose his alternate sports during off months. He was given the choice of swimming vs. speed skills for summer term. He gets all kinds of choices. I just also recognize our kids benefit from structure and don't necessarily have a super human ability to overcome themselves just because they have autism. It's actually just the opposite. I think being in situations where you make the CHOICE to work out, the CHOICE to work hard, the CHOICE to have a good attitude is good life. Like this morning where he CHOSE to wake up nicely. I tell him I appreciate that, because it was a CHOICE!

 

 

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Edited May 11, 2017 by OhElizabeth

[Pawz4me]

Our thinking for both of our boys (both the NT one and the ASD one) is right along the lines of what Canadian Mom of 2 posted. I know it goes against what many on this board (as a whole, not just this subforum) believe, but we have always prioritized giving our boys control over their own lives. To my way of thinking that's the only way one can successfully go about building the decision making/critical thinking skills everyone needs for a successful adult life. Other than safety issues and basic health/hygiene stuff I don't think we've ever forced our boys to do anything. We didn't force them to eat certain foods. We didn't force them to leave public school and homeschool, nor did we force them to continue homeschooling. We never forced them to participate in any extra curricular activities. We made them aware of choices and possibilities, but the decision to participate was always theirs. Now did we encourage some things and discourage others? Sure, of course. But our approach has always been more towards guidance than dictating. I see no benefit at all to making a child participate in an activity he or she has no interest in.

 

(My caveat on this is that I'm parenting an extremely high functioning special needs kid. The basic life skill of going out in the world and functioning at a reasonable level in most situations isn't a big struggle for him. He might not--doesn't--enjoy many settings but he can do it. All of us are dealing with different issues and those certainly may--and probably should--influence the parenting choices we make.)

[Crimson Wife]

Some parents begin thinking about self-determination only when their children with autism are entering adulthood and weighing the (sometimes limited) options. But the conversation should start earlier —as early as preschool. In raising, teaching, and supporting young people with autism, we ought to ask constantly “What can we do that will ultimately help this child to lead the most self-determined, fulfilled life possible?†That’s why it is essential to offer choices whenever possible instead of forcing a particular expectation on a child. The goal shouldn’t be to fix the child or make the child “normal†but rather to help the child develop the ability to make his own decisions, to exert control over his own life." - Uniquely Human by Barry M. Prizant.

 

In my deafblindness intervention classes, this was one of the biggest points the professor stressed. Self-determination needs to be fostered from a young age, not just when the teen or young adult is facing transition.

 

I may insist on learning a particular skill but to the extent possible I try to allow for her to make choices. For example, right now my DD is working on shoelace-tying so while I won't allow her to skip practicing the skill, I do allow her to choose whether she wants to practice tying her own cheerleading uniform sneakers, my sneakers, or a sibling's pair of sneakers.

[Lecka]

I have been thinking about it more, and I think right now I am pretty happy about opportunities he has at home... we have a trampoline, and he can play with his siblings, and those are things I value.

 

But I think in the future I do want him to do some activities. But I am going to wait on it for now.

[Guest]

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Edited August 14, 2017 by Guest