Modified Independence - a perspective

[momofrussell]

I did a thread on this a month or so ago at Downsyn. I can't remember what subject prompted me to do so but it made me start to think about independence and Russell and life. Well, we've had some great threads like the potty stuff and the dressing themselves stuff that it reminded me again of modified independence and Russell and DS in general.. so I thought I would share again.

I am sure you all will realize as I do when reading theses wonderful posts, that all of our methods and children are different. We all agree that we want ALL our kids (ds and typical actually) to be independent adults one day. With that, I realize though that some kids like Russell will need more modifications and his independence might be "independent" but different then others. I want you all to know that as our children get older, if it's modified, it's OK though. It does NOT ever have to be "perfect" or what the next independent child is doing even. I had to get to the "is it ok though?" part just recently.

An example....(which on of Cindy's new potty posts prompted me to think about)..

We work on self help in the house but Russell is still currently still totally dependent on us. Right now he CAN kinda drink from an open cup but to be independent he works better with those sippy lids and/or lids/straw combos. Like Cindy, I am not into moping forever and well, that's just me. So... although we STILL will work on open cups.. if Russell gets to say, 25 and still doesn't quite grasp the open cup method.. do I want to be out with him and hold his cup for him or would it be better for him to be independently drinking himself with a sippy or straw/lid combo..I'll pick the sippy or straw/lid combo. Even if it's a kid one! LOL

My fear at first was that people would think he should be doing MORE or that we resigned to certain things... but realisticly, for our family, I need Russell to have some form of independence, even if it's not what everyone else is doing. Russell will need lots of these modifications to be independent.. or semi independent actually.

And I want everyone to know with that, it's OK if you modify for what works for YOUR child... and to, yes, keep working on those goals.. but sometimes you take the modifications instead and it's really ok!

A.

[MB]

My fifteen-year-old son would still prefer to use sippy cups because he has to concentrate so much on not spilling an open cup. We do not want a fifteen-year-old walking around the house with a sippy cup for obvious reasons. We stocked up on the insulated coffee cups with the lids with the small openings. We all use them when we are on the treadmill or are sick in bed and don't want to spill the Sprite or soup all over our pajamas. I am very frustrated when I go to an arena that refuses to allow lids or straws. I spill half the drink trying to get back to my seat and then knock the other half over onto my purse after I sit down. My son gets as frustrated as I do.

I think I constantly get a bad rap around here for being too mean.

My son will never be able to learn to sew a button on a shirt. He is significantly farsighted and his fingers are too chubby to thread a needle and position the little shirt button. In fact, he cannot button the top button of his dress shirt.

I look at what he can do independently and insist that he do it whether I am direct with him or simply wait until he initiates. He is not required to button that top button or sew the missing button because he can't. He is required to ask someone for help. I didn't get in his face and tell him with a mean scowl that he needed to ask for help. My husband and I decided to simply wait until he asked. After waiting a few times in a row, he figured out on his own that asking for help with the top button was part of putting on a dress outfit.

He will soon be leaving home. If he can walk down the hall of his dorm and knock on his neighbor's door to ask for help with the top button, then I am eliminating one more responsibility someone else has to bear for him. I do believe there is a difference between requiring some sort of staff person to help him get dressed and empowering the kid to ask a peer for help when needed if he is developmentally ready to ask for help.

[Ericsmomma]

MB,
I think the greatest obstacle for my son's independence is....ME! Momma!
I started to realize this when I went to our parent teacher conference few weeks ago.
His teacher was going on and on how he picks up after himself, hands out papers to our kids,
hangs up his coat.....I was totally dumbfounded! Did Eric hire another "child" to take his place in class? Is this the same Eric who "plops" down everytime he doesn't want to do something?
Who doesn't feed himself (acts like his arms are broken), doesn't get dressed himself,....duh!
Me thinks me is getting played! I've always felt like I needed to help him....that the poor guy couldn't do alot of stuff himself...after all, he was a premie, had hirschsprungs disease, and doesn't talk. But I've come to realize, I totally underestimated him....I didn't have enough faith in his ablilities to make him try. I have been totally off base with him, and now I'm finding it hard to correct these behaviors. I guess patience and time are all I can rely on for now.....

[momofrussell]

MB I don't think you are mean... although being part of the mean mom club is something I acheive with great pride with my oldest LOL. I think you have certain expectations for your kids and you also know what your son can handle.. or if he can't handle it, expect something else, i.e. asking for help. That's a great idea and I like that. That, to me, is where the "modification" comes in.

Russell has alot in his way and functions still like a baby. We are trying hard to get him some independent skills for him right now. I really don't know what the future is going to hold, I just keep plugging along, figuring out ways to adapt for him for now. I also modified some stuff since we've moved and it's helped him out alot. It with table time and food and such. Even though we still have to do hand over hand if he wants a drink, he helps me get it and pour it, ect...

A.

[MB]

Thank you A. I appreciate your comments.

Some modifications are so simple that I think they are the hardest to realize like simply waiting for the kid to ask for help. Others, I think, are hiding behind routine and repetition.

Pouring milk and juice is a good example. One day it dawned on me that my son was independently pouring his own milk and juice every once in a while. Once I really started to watch I realized he would pour it when the cartons were half full and ask for help when they were completely full. I switched to half gallon cartons and voila he is completely independent in pouring.

Well now wait a minute. He is completely independent if I buy half gallons. Happy to provide the modification. The next step is to insure that he understands that he needs to buy half gallons when the day comes. Then the next step is to insure that he has enough money to buy the half gallon. Next is checking the expiration date to insure the milk will be fresh for the rest of the week. How about a real understanding of the perils of leaving the milk out of the refrigerator?

And everyone wonders why I can't be more laid back! This is just the milk. The boy loves cheeseburgers. Would anyone care to chime in on food borne illnesses in ground beef? AHHHHH!

mb

[Kristin]

I don't think MB and others are mean either. If we are, put me in that category, too. Clarice's first teacher, when Clarice was only weeks old, started me off by telling me that I had to always make sure Clarice knows that "No" means "No" because she would probably not be able to make gray area judgements. Therefore, she has rules and structure and that keeps her safe. That means, that when she breaks a rule, there are no second chances and there are consequences. It sounds mean, but it has served us well.
By the way, today I actually heard her go use the toilet without being told. Thanks MB, it's working...perhaps not in 4 days, but maybe soon!

[MB]

Way to go Clarice!

mb

[Claire]

Hey thanks for the idea guys. This post actually helped with my problem with Adam becoming les independant. I fell foolish for having brought the Dresing post back up. I'm glad to hear I am not alone with a child that may be palying us for all it's worth.
Some days I think I worry too much about how much he understand and not enough about " He can do it".
I guess that is part of the game.
Thanks

[hidyperson]

"I had to always make sure Clarice knows that "No" means "No" because she would probably not be able to make gray area judgements"

This makes me think of the 'our kids understand than we give them credit for' - which is probably right. But then there is "'how can she not know/understand that ?" We've stumbled over that probably hundreds of times. I've heard and read it described as 'just because then can do A doesn't mean they can do B'. It's a real brain warper. - Jeff

[momofrussell]

Jeff.. I get that with my 13 yr old LOL

Sadly.....seems Regan lives in the "gray area" more then I'd like LOL

A.

[cindylou]

A-
I agree that everyone will need to modify differently for their childs independence. I don't think you should feel badly for that--but I understand your wondering what others think--that's normal I guess, but we really shouldn't care what others think about the decisions we've made for our children, right?? Otherwise we'll go nuts!!

mb-
I don't think your mean.

yes Jeff- I think it's a mind warper to try to figure out what they know and understand and should be responsible for...

I'll be the first to admit that I don't hold Kaylee as accountable as I should because it's a lot of work....I end up having to emotional of a response to her disregard and disrespect for me and our family rules, etc. She can be quite lazy, quite mouthy and yes, Erica's mom -definately plays me at times. Now that she's 13 it's not the flop and drop thing anymore--thank God that is all behind us-but it's more of just wanting me to go back upstairs to get her shoes or find her a pencil for homework...make her bed, etc.

However, when she's ON--she's a charm. She'll make my bed and hers. She'll put away everyones clothes. She'll set the table without be asked and on and on. Only, however, when it's her idea.

so yes, we have been working on her being more responsible...

it's so much fun raising kids, isn't it???
cindy

[Jessie]

A. I'm so glad you posted this - I've been thinking of a way to ask about this type of thing over the past week or so. See, those potty training threads were worth something, it got everyone thinking! LOL

I think we all agree that our kids are individuals and will learn things at their own pace. Plus, we all have different parenting styles.

With that said, what I struggle with is knowing how much to push Jason. Sometimes I get so frustrated with him because I truly, in my heart and head, believe that he can do something. I believe that he does understand that growling at us and doing some other things is bad behavior - that's why he's doing it.

Then, there are times when I hear him and Brian trying to work through a tough thing or I have just gone around and around with him on something, that maybe I'm just not getting it how his mental retardation really affects him. Yes, I used the MR term because that's what it is and I think that it gets lost sometimes.

I know, I'm always the one saying that we need to treat our kids like kids first and then add on the disability. I still feel that way . . . my problem is not always knowing when to add on the disability part and truly needing to lower my expectations of him. KWIM?

For instance, I KNOW that Jason will never be able to carry on a conversation in terms that we think a conversation should be, I KNOW that he will never be able to learn simple math, I KNOW that he will never be able to live even semi-independently. I am absolutely ok with that because those are things he simply cannot grasp. But, when it comes to some basics - coming out of the bathroom when he's done (a side effect of not prompting him to go to the bathroom now is that he stays in there forever), not growling because he doesn't like something, getting over being jealous of Ellie . . . am I still expecting too much? Can he really understand? Does he really have the mentality of a 3 year old and it's never going to develop any further?

To me the hardest part of helping to raise Jason is the unknown. The unknown as to the extent of his understanding, the unknown as to how much more progress we should expect and therefore push towards, and the big unknown of what is his life going to be like when he's older?

Sometimes I feel like me and Brian are the ones that need to see a Behavioral Therapist more than Jason does - or someone to tell us what we need to be doing for him, how to react to things he does, etc.

So many questions, so few answers . . .


Jessie

[Chester]

good thread. It's been bugging me too!

For me it's easier to write it than do it. I expect the world out of all my kids. I expect them to have manners, I have expect them to try their hardest, I expect them to clean up after themselves, etc. It looks different for each one of them. Cory is the oldest, and a clean room for him is everything off the floor, bed made, closet shut, Gracie's clean room means overly organized and extremely tidy, and JT......then there's JT.

I think because JT is so much younger than our other two that we kinda forgot was normal development was, plus he is sooooo easy to baby. He is the king of all manipulators, it hit me right before Thanksgiving that not only does he maniupulate the outside world, but us too! ouch!

So JT's world has changed dramatically. Not much gets done for the little bugger anymore, he doesn't always do a perfect job and most of the time it's far from perfect but I think he's starting to see that his gig is up, and he's enjoying it. He's found some soft spots in Dad, so he's not totally to give up his testing yet.

So my new theory is JT is just as accountable as every other family member in this house. Not everyone in the house has the same expectations, but it's my job as his Mom to push him to find out what his limits are and to keep trying new modifications and ideas. It's extremely tiring, but just in the few months that I've changed my way of thinking I can tell that JT has grown.

We're not there yet though, believe me.

Just a secret between us; he'll always be my baby and his smile can make my heart melt faster than anything.

Dawn

[MB]

Jessie asked for a response from me so here goes....

What if you stopped worrying about Jason and started worrying about yourself? What if you listed what Jason is doing or failing to do that keeps you and the family from being relaxed and happy and then go to work on those issues whether he understands them or not.

Stay with me here, UnoMassers!

I remember when I was first married. It had been two years I think. I had told my husband that I thought we had some issues we needed to discuss. (Honestly, I can't remember the issues. We did not have the child with Ds yet.) He kept saying we didn't have any issues and blew me off. I was so frustrated I told him he could move out and then try to convince his family, my family and our friends that even though we were separated, we didn't have any issues! He decided to address the issues. LOL!

I have had to resort to this tactic with my son. By giving negative, natural consequences for a behavior, he would come to realize that the behavior was an issue with me. For example, my son will growl while he mutters unflattering things under his breath when he is frustrated with me. I really didn't have problem with this behavior in a boy as long as he didn't do it in public. The negative consequences came when he began doing it in public. He would have to apologize to me, go home and spend some time in his room. He quickly caught on that he should keep that behavior (that perfectly natural behavior in his opinion) at home. I didn't wait for him to "get it." It was a behavior that was embarassing and upsetting to me so I decided to eliminate it for my sake.

Guess who else is out in public? Teachers, employers, activity supervisors all exist outside our home. I didn't think about them when I decided to do something about this behavior, but it has certainly made a difference for them as well.

I give myself 15-20 consistent repetitions before I decide that he is either developmentally delayed or disabled regarding the issue at hand.

Not every issue requires negative consequences. As we have seen with some of the potty training, some issues require the care givers to simply stop performing the task for the person with Ds. One of the things I hate to do is get kids ready for playing in the snow. So I would conveniently need to use the bathroom when the kids would head for the door. After a few minutes I would emerge and be left with the tasks the kids absolutely couldn't perform themselves instead of sitting there waiting for me to find all of the stuff and dress them from the inside out.

Playing in the snow requires snow pants, boots, gloves and such. The consequence of half dressing for the snow is felt immediately. It is a great motivator to dress oneself correctly. What about a cold day? I just let him go out without a coat. After a few minutes he would come inside and grab his coat and come to me for zipping etc... This eliminated all of the coat fights and I told school to do the same thing.

What about household chores? I believe everyone in a household should be a contributing member. What they contribute isn't as important as the fact that they feel the family would be worse off without them - they need to feel that the family depends upon them for its welfare.

While my son has regular chores like taking out the trash and setting the table, he also contributes to the family by keeping track of the calendar. He reports daily about appointments and activities and reminds everyone of their commitments. My daughter has required chores. Some she does without blinking and others require threats that the US military hasn't even come up with. She is, however, an excellent babysitter and has been for years. Both of these kids have been a challenge, but both have contributed in meaningful ways to the family unit.

What would be Jason's or any of our kids with Ds score on contributing to the family unit? How about contributing at school? the community? church? How about taking the emphasis off what the child with Ds needs and start placing the emphasis on what these societal units need to function and plug in the kid with Ds wherever possible? If the child with Ds cannot perform the task, nothing you do will change that. If the child with Ds won't perform the task, then the natural consequences come into play.

Let's get away from the negative stuff. Many of the functional skills we think our kids can't perform are actually skills that the kids see no need to perform. If it doesn't make sense, why do it would be the perfect phrase for a t-shirt for my son. For many tasks he has been taught how to do them but has not performed until it made sense.

For example, he has been taught money for six years now. He didn't get it - or so we thought! The fact is he didn't need to get it. We paid for everything. He is now going out with friends to dinner, movies and bowling. All of a sudden he is using a wallet. He would come to us and ask if he had enough money for his date. We would require that he at least participate in counting his money with us.

He went out with friends this afternoon. I asked about his money situation. He pulled out his wallet, went through the bills and announced that he had 28 dollars - just about the amount we usually give him to take a girl to dinner. All of a sudden having the correct amount of money is important. He does not want to be embarassed in front of his date. If I asked him how much money was in his wallet right before he left for school, where he doesn't need money, I would probably get the wrong answer. I would guess in about six months he will own the money counting skill. By not hovering, he naturally gets that he has to step up to the plate to make these dates work.

I am ready for the responses from parents who say their child doesn't care about contributing to the family or dating or going bowling etc... I would ask how they would know that unless the child is exposed to these activities?

Have you ever taken your child somewhere to find that the child absolutely loved it and would do anything to do it again? That would be Disney World for one young UnoMasser we know!
Instead of holding the trip to Disney or McDonald's or bowling or the swimming pool over the kid's head, use it to motivate the child to stretch his abilities. All of these places require money for entry, snacks etc... I would start the money thing by sending him with it to the activity. Where I differ from most parents is that I am willing to allow him to make stupid purchases and even lose the money. I will not rescue him and I guarantee you a lesson is learned. I don't lecture him. I just shrug my shoulders and give him an empathetic look. Sooner or later he catches on. Better a missed order of fries at the pool for misplacing his money than missing the opportunity to live on his own because he never learned to regulate his money.

I may have posted this before. We have stopped prompting him to be ready for the bus. If he misses it, he will have to wait for me to dress and then drive him. He will have a consequence at school and one at home for taking me away from by beloved cup of coffee. It hasn't happened yet, but I think I would be inclined to leave the breakfast dishes for him telling him I did not have time to wash them because I had to drive him to school. He would be required to do the dishes when he came home. Our breakfast dishes are very minimal, less than 5 minutes worth of work. At school, I assume he would receive points toward a detention. Again, I would not lecture. I would shrug my shoulders and say something like, "Let's get this done so you can go on with your afternoon."

How nice for this kid that he doesn't start each day mad at his mom and dad. How nice for his mom and dad that we don't start each day mad at him. That first week was a killer, though. I can't tell you how many times we had to catch ourselves from saying anything. It was behavior mod 101 for us.

Does this make sense? I am happy to clarify for anyone who has questions. I do ask that the questions be asked in a spirit of understanding.

Thanks.

mb

[MB]

I wanted to update my post. As I said in the previous post, we have stopped prompting him whatsoever to get on the bus. This kid cannot subtract. This morning he is eating his breakfast and announces, "I'm done. I only have five or six (2 clocks in kitchen set one minute apart) minutes for the bus. I have to go get my iPod in the basement."

Here is another example of me eliminating something that was annoying me (me keeping track of the bus departure for a 15-year-old) that allowed him to stretch developmentally in other areas.

mb