For Those Who Have Sick Teens

[juliegee]

Hey Fellow Parents of Teens with Dysautonomia-

My son is 17/yo and is truly suffering with NMH, CFS, small bowel dysmotility, etc. His doctor at Hopkins guesses that Mack is functioning at about 60% of normal. My husband & I have the hardest time separating what is REAL illness and what is a convenient excuse for not doing what he is supposed to do. I know you've all struggled with this too.

We thought we came up with an ingenious trick for getting him to keep his room picked up ... Up until recently, I have been cleaning his room several times a week because he's sick. I figured school, etc. was exhausting enough for him. BUT, he was clearly taking advantage of me. Clothes, 50+ empty water bottles, dirty dishes, music gear, record albums, homework papers all littered the floor of his room, sometimes knee deep. We halted ALL of that by charging him $1 to re-gain anything that he left on the floor. We had a daily inspection time (didn't do it every day to keep him on his toes.) I scooped up everything he tossed on the floor & made him pay to get it back. (Money goes in a college fund.) Hubby's idea. It worked like a charm, until today.

I went upstairs and nothing was put away, BUT nothing was on the floor. It was all piled on his desk, bed, bedside table, and sink. Mad Mommy Grrrr. I went with it and piled it ALL on his bed. Everything on his desk, sink, bedside table, etc. Anything that wasn't put away is piled on his bed. I know that's the first place he goes when he gets home from school. It won't be quite so easy to jump in today .

Are we being too hard on him OR raising a responsible son despite his illness. This is something we all grapple with every day. In so many ways, I worry that I do too much for him because he's sick. My husband says I am depriving him of the opportunity to learn to take care of things himself. I hate that he's sick and want to help and protect him as much as I can.

Share your parenting experiences with me. How do you sort this out? I know I can learn from all from all of you.

Thanks!

Julie

[Christy_D]

I know exactly what you are saying. My son will be 15 next month, and I constantly clear his desk of plates,cups, empty snack bags, etc.. I also feel like because of his sickness and everything he deals with (he hasn't been able to attend school for a year now) that I am helping him, but at the same time spoiling him.

I've said I feel sorry for his future wife, since I wait on him so much. I bring him food on trays and wait on him(escpecially in the morning thru midday when he is sickest). But I wouldn't do this if he was a healthy child. Even his sister waits on him, and I feel he is probably taking advantage. It is a fine line, I am helping him because he is sick, but on his good days I should make him do more.

Also, what is small bowell dismotility? Next week we are going back to Cleveland for further testing, and they are going to do a capsule endoscopy to look at the small bowell better. He has been diagnosed with gastroparesis, but is still nauseas daily. He is also constipated, going once every 3 or 4 days.

Christy

[vemee]

My daughter actually cleaned her room before she went back to college last week. Your son's room sounds like the usual state of my daughter's room. when she was in high school the only way we could get her to clean her room was to tell her she couldn't do something unless the room is clean. Some times it worked and she cleaned it and other times she would do what your son did. At least that way if she felt good enough to go out then she felt good enough to clean her room. Now that she is in college she is feeling a little more responsible and independent and the situation is improving. I guess it gets better with age. She also sometimes uses pots as an excuse. Other than that I have no further advise we went through the same thing you are going through.

[yogini]

I'm not a parent, but my mom spoiled me and never made me do housework. My sister inherited the cleanliness gene and I didn't. She started folding her clothes at age 2 and wouldn't let anyone else do it. I, on the other hand, unfortunately to this day leave my stuff all over the place - though luckily my mess is all papers and clothes. Food/germs/smells I can't deal with...I clean/disinfect obsessively b/c I'm a female! I now joke with my mom that she should've been better about making me clean.

Your son is smart for finding a loophole in your rule. You can make it tighter - maybe charge him for anything on the bed, desk or not in place. As for cleaning, can you limit it to certain things, like vaccuming and dusting, that aggravate his POTS or times when he is sickest? I promise you he'll thank you when he gets older!

[firewatcher]

Julie,

I was brought up to by "neat-freak" parents, when I got to college all the "inner mess" inside me just exploded! (Can you hear the boom echo?) I was also told that I was lazy by coaches and my Grandfather and others because of my inability to get up on time (sleep disorder...duh!) and my inability to exert myself physically. This still echoes in my mind today ("get your lazy b#++ around that track!"). I think that I actually overcompensated for this constant nagging by driving myself really hard and requiring that I make myself the best at whatever I was doing. Of all my family members, I was the only one who was ever physically active (martial arts and later weight-lifting) in a vain effort to make myself not be "lazy." (See where all that physical fitness got me?!) I have since learned that I'm just not a "neat" person. I can live with clutter (hearing the voice of my Mother: "She'd have a really nice house if she'd just pick it up a bit!") With two boys, I just can't pick it all up. I married another pig like myself, so he can't complain...

OK, enough therapy...

If you have not instilled a "work ethic" in him by now, through your own example, you won't change him. It is too late. However, he may surprise you when he gets out on his own. For a "lazy" person, I managed to be successfully self-employed and completely independent in an Art career (which is no easy task!) If he has too much to pick up by himself, maybe he has too much stuff. This has been very successful so far with my boys...if it's on the floor, it's gone! I've done the same thing to myself. I am cleaning out and paring down. If I only have the essentials, I can't clutter!

[erikainorlando]

I have a 16 year old daughter but I want to say nothing applies because she is well. Now I will go on...I am kind of a neat freak. BUT I don't/can't do what I used to and sometimes it is really impossible to get off the couch. So to do something at a certain time can be difficult let alone impossible.

BUT I have some time during the day I can do some stuff..I would imagine he does too. He has to prioritize his time. If he is operating at 60% perhaps he has only a few hours a day he can do things...but certainly 20 minutes of organizing his room is not too much to ask. I would just let him decide when he feels well enough to do it.....but it has to be done by X o'clock.

Yyou will be helping him...he probably will have to do things in life, regardless of if he is sick or not.

I know it is hard to discipline at times...I hate to be the "meany" but we are giving them a gift. I have seen parents spoil their children because they are mentallly retarded or have other handicaps...but it is never beneficial. Being a parent is a hard job. You are doing a great job at it.

Erika

[babettess]

Hi Julie,

I smiled as I read your post. Aren't we as mothers always wondering about our choices?

I have an 18 year old daughter who has POTS/EDS. Her room is a total mess. I even made a sign and put it on her bedroom door that says-This area has been deemed a disaster area by the Department of M.O.M. and D.A.D. It's been there for probably a year now and she says she's not taking it down.

About her disaster of a room-what I have decided - and this could be right or wrong- is that she is old enough to make her own decisions about what her own room looks like, but she's not permitted to leave messes in the rest of the house. I decided this based on a conversation with my now 20 year old (then 17 year old) about her decision on something.While asking (well lecturing) her about her decision she made the comment to me, "Do you think I haven't learned anything from you in the last 17 years?" That comment really has altered my style of parenting. I have always been a very strict parent, but I eased up after that conversation and now give my children the opportunity to make more choices on their own. I still have high expectations, but I've lightened up a little. So I figured that yea, by 17, I should have taught my daughters most everything they should need to know and it was time to see if they had absorbed any of it. So I eased up a little on what they HAD to do. I decided that as long as my ill 18 year old knows how to clean, she can make the decision as to whether to keep her room clean or not. (It took a long time before I could walk by her room without getting upset, but I'm not bothered by it anymore.) I do expect that her room be free of anything that could cause a health hazard, but I don't pay a bit of attention to the piles of clothes or books. I mean if she can't find her favorite pair of jeans or a report that's due, well that's not really my problem, but hers.

As to how I handle teaching her other responsibilities:

When she feels up to it, she cooks supper and does the clean up and also does laundry. Since I am also ill, I would rather have her use her energy to help out the whole household than use it to clean her room. A little selfish of me??? Maybe, maybe not. One of my goals with her is to help her budget her energy and time so she can handle her illness better. I want her to be as prepared as possible to go into her hopefully "independent" adult life. She is a fulltime college student and on the days when she has college, she is worn out and doesn't do anything else. But I expect her to do more on her good days. I also give her a length of time to finish anything extra I might ask her to do. I will say, "By next Monday, I would like for you to....." I am hoping that by giving her a length of time she will learn to budget her time and energy on her own. I also encourage her to use energy to learn daily living skills like cooking, how to clean different things, maintenance and general chores.

Anyway, so that is how I have handled things with my Potsy daughter. I 'm just passing this on to you. Please remember this is only advice. What has worked for me may go against your parenting style or you might just think it is ridiculous. I do not consider myself an expert in child rearing and the only letters after my name are M.O.M. I just have done a lot of research and have parented a lot of children throughout the years I was a foster parent and have always worked in jobs that were around or about children.

I currently provide family support to families in our local community who have children with special needs enrolled in the Infants & Toddlers Program. Here?s the advice I would give you if you were one of the families I work with. Please feel free to like it or not like it.

To help encourage your son to be responsible and to develop into an adult who knows how to budget his time and energy you could try the following.

1.) Think of all the tasks your son needs to know to live independently as an adult. (Even if you think his illness will prevent him from ever being independent and regardless of his limitations, as modifications can be made to accommodate his limitations) These could include cooking, laundry, cleaning, yard work, house maintenance, car maintenance, etc. You could also add "couch" activities like making up monthly menus, grocery lists and cutting coupons. Be creative. Be prepared to help him learn the new tasks.

2.) Make a list of all the things you have come up with and break them down into tasks such as ?Load the dishwasher?, ?Change the batteries in the smoke alarms?, "check the air pressure in the car's tires", "cook supper", etc.

3.) Give your son a time period to complete a set amount of tasks that could go something like the following: ( Use your own judgement based on what you know about your son and what areas you think will help foster his indepence the most. This is just an example.)

January 11-18, 2010 During this week, you will choose two activities from the ?List?. (This gives him the control to learn how to budget his energy and time. It let's him choose what he wants to do and when he will do it. Teenagers love thinking they are in control. I think children with illnesses especially like having areas of their life that they can control, as so many areas of their lives are completely out of their control.) If you would like, add an incentive or a consequence. Example: If both tasks are completed within the set time period, he gets extra allowance. If not completed, he would have to make arrangements with a family member to do his chosen chores and pay them for their time.

This simulates real life. If you work hard at your job, you sometimes get bonuses and if you chose to not do things yourself you might have to pay someone else to do them. Make sure you have everything in writing and have a place for him to record what tasks he accomplished and when.

He will learn valuable skills by having the opportunity to make his own choices as to what to do and when to do it. You will be fostering his independence in more ways than one.

I hope this helps. I know you are a wonderful mother as it is so evident when you are talking about your son. He is so blessed to have you.

Babette

[juliegee]

Thanks for everyone's help it's good to know that I'm not the only one struggling with this .

Christy, I repeatedly say the same thing- "Your wife is going to HATE me." I have waited on him hand and foot since he's been sick. This is the new tough-love Mommy BTW, sounds like your son may also have small bowel dysmotility too. That's when the small bowel empties erratically usually too slowly, but sometimes too fast. Mack's food actually moved backwards for hours at a time- MAJOR NAUSEA. Mack had an antroduodenal manometry to DX. But, if your son is doing the "smart pill"- the camera that moves throughout his GI tract, it will definitely give you answers. If he's already being treated for gastroparesis, I'm not sure how much more helpful those results will be as the treatment is the same. Hope he's using a prokinetic like Ery-Ped or domperidone and Miralax for the constipation.

Vemee, I LIKE that plan. If he has the energy to go out, he would have the energy to first clean his room. However, with my son's luck, the cleaning would exhaust him so much, he'd end up in bed in his clean room too tired to go out Congrats on your daughter actually leaving a tidy room behind for you! Yeah!

Yogini, I LOVE hearing about it from the child's perspective. I wasn't sick as a kid, but my Mom was a perfectionist and insisted on doing everything herself. It did NOT prepare me for real life. BTW, Mack isn't expected to vacuum, dust or clean his bathroom. All I am asking is that he pick it up . I am happy to do the rest.

Jennifer, no charge for the therapy . We could all use some! Like you, because of my illness & "secret inner ADD", I overcompensate and work like a dog. I always push myself too hard & worry that I've modeled that (poor self-care) for Mack. I'm not buying your theory that it's too late to change him based on my behavior. As a teen, my room looked just like Mack's- it was awful. Once I got out on my own, the pendulum swung the other way & (if anything) I'm a bit of a neat freak now. Soooo, there may be hope for him. I hope You are so right about him having too many things. We are constantly paring it down, but we could do some pruning again. He loves old things, record albums, turntables, typewriters, now old cameras. He's a bit of a pack rat....

Erica, we deal with the same issues with our kids- sick or well. Your advice feels right on. It's hard to discipline, but helps them in the long run.

Babette, Thank you so much for taking so much time with my dilemma. Your perspective is very refreshing. You know I've tried the whole laissez-faire thing. When rodents (not really- but wouldn't have surprised me ) and mold moved in, I relented & stepped in. For the first few weeks, Mack relished in his pigpen & then practically kissed my feet when I finally shined things up again He was so grateful. I LOVE the disaster area signs. You could sell them online & retire young.

Your plan is interesting & encompasses MUCH more than I'm trying to accomplish. But great advice & so appealing to any teen because they can pick and choose what to do & when- magic candy for this age group- "the autonomy." I will use bits and pieces of your plan until he leaves home (IF he's ever well enough.) Thank you again for your sage words of wisdom.

I LOVED hearing how you all deal with this. Keep your wisdom coming. I'd love to hear from more of you in this exclusive club

Julie

[yogini]

BTW, even though there's room for improvement , I've gotten much better over the years...I had to learn to pick up for roomates and work and b/c I realized I was wasting WAY too much time looking for lost stuff...so there is definitely hope!

[firewatcher]

Julie,

By modeling a fabulous work ethic and honoring a moral code, my parents taught me more subliminally than they ever did through discipline or punishment. I saw what they did and what they said were in sync and I strive to do the same. If Mack has seen the same from you and his Dad (and I'd bet money that he has) then it is "in there" somewhere. I would not know what hard work and saving looked like, if I had not seen it from my parents. The fact that I choose to live with clutter is not a product of my upbringing. It is my choice to live like this, I choose what I put my energies into and housekeeping is not frequently an activity that I choose. I'm not completely happy with my pig-sty, but it is a bit like a magpie's nest for me...reminding me of projects that I want to get accomplished, little glints of inspiration at every turn. Eventually I will move it all to my studio and my home will bear a more Spartan aesthetic. It sounds like Mack has a good head on his shoulders. If you can give him the opportunity to be lazy for a brief moment in his life, let him take it. When it is all up to him, he will see that it is a hard, hard world. There have been many times that I wished that I could go back and be a child again, when all I had to worry about was grades and cleaning my room.

[juliegee]

Julie,

By modeling a fabulous work ethic and honoring a moral code, my parents taught me more subliminally than they ever did through discipline or punishment. I saw what they did and what they said were in sync and I strive to do the same. If Mack has seen the same from you and his Dad (and I'd bet money that he has) then it is "in there" somewhere. I would not know what hard work and saving looked like, if I had not seen it from my parents. The fact that I choose to live with clutter is not a product of my upbringing. It is my choice to live like this, I choose what I put my energies into and housekeeping is not frequently an activity that I choose. I'm not completely happy with my pig-sty, but it is a bit like a magpie's nest for me...reminding me of projects that I want to get accomplished, little glints of inspiration at every turn. Eventually I will move it all to my studio and my home will bear a more Spartan aesthetic. It sounds like Mack has a good head on his shoulders. If you can give him the opportunity to be lazy for a brief moment in his life, let him take it. When it is all up to him, he will see that it is a hard, hard world. There have been many times that I wished that I could go back and be a child again, when all I had to worry about was grades and cleaning my room.

Good advice, gal. Appreciate it. I love the description of your home. I, too, have piles of projects stashed away- "little glints of inspiration at every turn!" Love that!

[Brye]

No brilliant advice from here though I've enjoyed reading these. Good advice for the distant future. I have 4 and my oldest is 7. I'm still in denial that they are going to stay small, cute, and do everything I say for a cookie bribe forever!!!

Brye