Unconditional Parenting for kids with Down syndrome?

[qimama]

Can any of you mamas out there with kids with Down syndrome (or other special needs with similar behaviors) help me out with some discipline advice?

I’m a huge fan of Alfie Cohn’s Unconditional Parenting, but I’m finding it impossible to actually put it into practice with my son (4 ½, T21). I know it isn’t all about getting our kids to do what we want, but there are seriously some things that are just not ok and there are certain things that must be done. He ranges from a little uncooperative to completely out of control. He’s difficult to communicate with and if he doesn’t want to do something or feels thwarted, he just flops down and whines/screams “I want to go in there!” It’s especially hard to deal with in public. I’m nervous about taking him anywhere because I feel like a terrible mom. I feel like the entire day with him is a battle. It can take 40 minutes just to get him to sit on the potty if I insist that he pull down his own pants (which he can easily do himself, but he refuses), etc. I’ve recently started using a more behaviorist type of approach and am having much more success getting him to cooperate. I’ve been trying things like offering choices (“do you want to use the downstairs potty or the upstairs potty?”) as well as (I am ashamed to admit), thinly veiled rewards and punishments. For example, “first we sit on the potty, THEN we’ll watch Sesame Street.” or “if we don’t hurry up and get dressed, we won’t have time to watch Sesame Street before we have to leave.” (Sesame Street is highly motivating for him.) I feel a little bad about it, but I also think that he does need to learn things like time management…

I don’t know. I’m just having a hard time, even with my newfound conditional parenting techniques. I want to teach him things he needs to know so he can function independently in the world. I want to not get so frustrated with him which takes a toll on our relationship. I want him to know he is loved, as he is. I want to do the right thing, but I feel a little lost.

I need help. Anyone?

[AbbieB]

My son (who has Ds) is almost 3 and over the last 6 months or so has realized that he has an opinion. I completely understand how you feel.

What you described above sounds pretty darn good to me. I see nothing wrong with offering a choice (upstairs or downstairs) and pointing out natural consequences (you'll miss your show). It's all stuff I do with my typical 6 1/2 year old and I'm starting to do with DS.

My typical DD has melt downs if I do not come running to help her wipe. She's been potty independent for 3 years and will take care of her needs herself when I'm not there. It makes me crazy. But that's what kids do. They have their quirks and like Momma to help them even when they don't need it.

I think that it can be tough for parents of kids with special needs not to question themselves because of all of the pressure to do everything we can to help our kids achieve. So tough that we feel guilty when we step back and treat them like any kid, allowing them space to have an opinion and honoring it.

My advice to you is to take a deep breath, exhale, and then remember your child is 4. It's OK that he wants or needs help in the bathroom and that he has tantrums when you want something different than him. All parents have times when the kids are being uncooperative and we would rather not leave the house for fear of a public melt down and all of the perceived judgment that comes with it.

Your child will mature and learn life skills like time management. He will willing pull his own pants down to use the toilet and will go along with errands that are not his idea. It just might not be this month.

FWIW, 4 was THE HARDEST age for my DD.

[qimama]

Thank you so much for your response. It was very helpful and reassuring. I really resonated with what you said about the pressure to get them to achieve and the difficulty in stepping back and treating them like typical kids. That's always a hard balance for me. I want to do all I can to help him, but I also want to let him be his own person without correcting him all the time. It's tricky. He's my first, so I'm also just learning how to be a parent with him. I have an 11 mo old DD, so maybe as she gets older, I will have a better idea what typical kids are like and that will help me with my DS. We're all just figuring it out as we go, right? Thanks again for your support!

[47chromosomes]

I have 2 sons. My oldest is 4 1/2 and has Down Syndrome, the other is 2 and is typically developing. Developmentally my 2 year old is ahead of Charlie, my 4 year old, though Charlie is right around 24 months cognitively (but behind in language, fine, and gross motor). Anyway, I have this interesting dicotomy going on with essentially raising two 2 year olds--one typical, one with T21. And honestly, I have to parent them totally differently at times. I am not familiar with the parenting technique you mentioned, so I cannot comment on that, but just to say Charlie is different, he learns and processes information differently, and what works with Calvin does not always work with Charlie. And I totally understand what you mean by his behavior, and your loss of how to deal with it impacts your relationship with him. I think relationship is vital, and what you need to do to foster that is paramount. If it means using behaviorist methods, then that is what is appropriate right now. Consider the goal of the method you mentioned, and then consider what the outcome is when you use it with your son. If it is not accomplishing what you hope it accomplishes, then it is not what he needs. Not right now anyway. Doesn't mean it won't be completely appropriate later on.

I noticed you said your son is your first, and you have a younger daughter now. You know, my son with T21 is also my first, and things for me started to get a lot easier once my younger son passed Charlie developmentally. I felt like I started to get a handle of what works in parenting, and then I could feel more comfortable about what I was doing with Charlie, or had better ideas on how I had to modify things.

Anyway, definitely been where you are--heck, I am there in different ways all the time. It takes an incredible amount of patience and creativity to parent and connect with someone who works in a different way.

[47chromosomes]

Originally Posted by AbbieB

FWIW, 4 was THE HARDEST age for my DD.

Just wanted to say, I was SO relieved to read this. It has been a tough year for us, too. Charlie figured out he has an opinion (his fav new thing to say is "I don't like it!"), AND he is getting big and hard to just scoop up off the floor after a "Flop-n-Drop" if things are happening how he wants.

[LynnS6]

I don't have a child with DS, but I'm interested in UP (not always positively) so I clicked.

Several thoughts. My first is that my older child (SPD, mild dyspraxia + anxiety?) does not learn through modeling. He learns through direct instruction. A lot of the UP methods simply don't work with him. He also needs to be explicitly told of the consequences of his actions. Thus, while I understand the UP ideas, I don't think they apply to all kids. I'm more of a general AP practitioner: I need to meet the needs of my children. For one of my children, that means direct instruction and sometimes rewards. The other child doesn't need it.

Second, there are certain things for which I'm all in favor of bribery. Potty training is one of them. sometimes the child is less interested in the skill than you need them to be. Ds needed to be bribed, and he responded well to it. He had no interest in change (this is the child who slept in his crib until he was 5, and would have slept in it longer if we hadn't painted his room and removed it). I, however, had a vested interest in his being potty trained. We bribed him again to learn to wipe himself. He's 9 now, and I can't see that this has damaged our relationship in any way. It's not like I bribed him to love me. I bribed him to wipe his own rear end. I think sometimes we invest too much meaning in simple learning tasks.

So, if he needs to learn a skill, I'm not opposed to a little behaviorism. It ain't all bad.

Finally, I have to say that I'm somewhat of a UP skeptic. I like the sentiment, but I'm not going to lay awake nights wondering if I was doing things conditionally. Some things in life are conditional. IN general, we probably live a life largely consistent with UP: Some things in our lives are inviolable -- the kids will always get stories before bed. We eat together. I apologize when I'm wrong. Our love and respect for our kids is well expressed. I think they can handle a few "you can have your dessert after you put your dishes in the sink" kind of rules.

[SiobhanAoife]

Even Alfie Kohn, either in UP or in Punished By Rewards (both excellent books), said that using behaviorist methods for potty training was fine because even if it did reduce the child's intrinsic joy in personal achievement, we weren't hoping that our kids would grow up to be deeply proud of themselves as shitters

[qimama]

FWIW, 4 was THE HARDEST age for my DD.

This is helpful for me to hear too! I'm just having the hardest time right now and need to remember that it won't always be this way.

It's also so helpful to hear that your typical 2 year old is passing up your 4 and 1/2 year old with DS. I think I need to remember that Max is like a 2 year in a lot of ways and BEHIND a 2 year old in a lot of ways. Maybe I expect too much out of him. But I also have a hard time knowing what I should expect since he's capable of so much more than he chooses to do. I'm sure this is true of all kids, but it's so much more extreme with him (& most kids with DS, I assume.) I just get so frustrated that I not only have to help him with every little thing, but I have to go through a whole song and dance just to get him to cooperate with me helping him. (the "flop n drop", we know all about that one!) I feel like I have about 50% of the patience he requires and I'm afraid my impatience feels like lack of love to him. "I love you, I just hate everything you do?" I'm having trouble finding the joy. I think it's just that he's so hard to connect with and that's where the joy is. I feel like I'm in this place where everything my daughter does is just amazing and perfect and I'm just frustrated with everything he does. I'm sure he can feel that from me, but I'm not sure how to be more accepting. I really love the kid (of course), but he drives me crazy.

Thanks for the posts on UP. I think you are all right, a little behaviorism can be a good thing for some situations, for some kids. It seems to be the only thing that works for Max, so maybe I just need to embrace it and let go of that perfect parent image I had of myself before I had kids.

[Jenne]

Okay, I hope you don't mind if I post, I do not have a child with special needs living in my home. I do work with special needs children for my employment. I just wanted to comment on the idea of using reinforcement as "bribery." There is a big difference between reinforcement and bribery. Bribery is the offer of money/goods to do something illegal or dishonest. That is why bribery has such a bad connotation. So, unless you are offering cookies or $20 bills so that DS won't tell his Dad/Other parent/Teacher something it isn't a bribe!

Most of the research about intrinsic reward vs. external reinforcement shows that the offer of external reinforcement doesn't replace the intrinisic reward/value of an action. Why? Because for the most part we don't offer external reinforcement for mastered tasks. *That* is the point that I feel AC is trying to change in our society. The "good job" rote response for tasks that children by and large do not need reinforcement for because they already have mastered it and enjoy it. And therefore the "good job" or other external reinforcement can become a negative.

I think with your parenting style you don't have to worry about that. A truly behavior approach will have you fading those external reinforcers as he no longer needs them. At that point, the task has become intrinsically reinforcing/mastered!

I wish you all the best! It sounds like you are doing a great job with your children!

Jenne