View Full Version : teenagers! Here we go............
Dolly (Andrew's mom)
09-23-2003, 11:41 AM
Andrew will be 14 next week. He has lived with HCM since he was 6 and until now has adjusted well. Naturally we had some tears early on when he would be told "no, you aren't allowed to do that" but he always eventually accepted his restrictions and moved on. NOT ANY MORE!
I home school him and during Health we were studying cardiovascular health. Something he has become quite knowledgable in. We were discussing excersising and the benefits of it when he "slipped" and mentioned the weight lifting he has been doing. I was quite surprised since we have no weight lifting equipment in our house! He then told me he has been doing it at a friends house. I explained to him that lifting weights is not good for those with HCM and explained why. And I then mentioned something else that has been bothering me and that is all the caffeine loaded soda he drinks! I said that also is not healthy for anyone, especially someone with HCM. He then got very upset and said something that really worries me.
He shouted at me that he will no longer stop doing the things he likes because of his heart! He said he is going to enjoy his life from now on and that he is sick of being told "you can't do that"! He said he is tired of sitting back watching all the other kids do things that he can't and he is tired of being "different"! Then he raised his voice even more and said "It is MY life and I will do what I want with it!"
You guys this just totaly floored me! And needless to say worries me to death! He is at the age where, outside of school hours, he IS pretty much on his own and out of my constant supervision. Afterall, he has been weight lifting for some time now and I didn't even know that!
How do we handle a child that has become rebellious against their own HCM?!??!
mom to Andrew (almost 14)
septal myectomy in 96
ICD implant in 99
replacement implant surgery expected this fall
and aunt to Kenny who lost his battle with HCM at the age of 7
09-23-2003, 05:09 PM
Dolly, first of all I'm sending a big hug to you. It's hard to parent a teen, regardless of extenuating circumstances! I'm sorry, but I don't remember a lot about Andrew's personal story, but I do see that he has an ICD and his cousin died at 7 years old. I can't remember why Andrew got the ICD, whether it was personal history or family history or both. Anyway, of the 2 things you mentioned, weight lifting and caffeine, I would choose one and stick with it. For me I would rather he drop the weight lifting. You need to have a serious talk with him about what can happen and also have a talk with his friend's parents. Let them know that he can't lift weights and let them know why. Tell the friend too. Also, when you buy groceries, you can buy only caffeine free soft drinks so that he doesn't have access to the others. Good luck with whatever you decide to do.
09-23-2003, 05:18 PM
I have not checked this forum until now and sincerely hope that there haas been some previous response to your post which doesn't show here. (Maybe someone called you?)
This is a parenting issue with strong life or death implications due to the HCM. Children grow up and at a certain point become somewhat rebellious... it's a fact of life. I know the exact moment when I said to myself, "I need to find a new way of dealing with Anthony."
At 14, he wants to be an adult. And, barring unforeseen circumstances, he will chronologically get to the age to be considered an adult. (We all know some who reach the age without gaining the maturity, though.) You have been making decisions for him and now he wants that responsibility. Your job is to guide him in how to make the correct decisions on his own.
Get him to compromise with you... the decisions are his, IF he will sit down with you and discuss his entire thought process as to how to arrive at the decision. That way, "Because I want to..." is never a proper adult way of arriving at a conclusion. Also, he gets the benefit of your input. Adult or not, there are other ways of looking at things that someone has experienced which may not have occured to us.
Ideally, you should overruling veto powers until he reaches legal age and a legal responsibility to exercise them. Maybe his first "adult" decision could/would be to agree to these terms. Then you can turn to the "hot" issues and get him to look at them from all angles.
I read a posting on this board from a young man who had wanted to continue playing sports and later realized the folly in it. Adults do this, they change their minds and their focus, and they go on. Adults see that there are more important considerations than what they want. We don't stubbornly stick to our - selfish or unselfish - motives when we start to see the big picture.
I hope also you can see that I am trying to gently guide you into the same frame of mind. Keep an open mind and help your son grow into a man.
09-23-2003, 05:31 PM
Whoops, I mistakenly read the date of your joining as the date of the post... ignore my first paragraph. (Reenie posted as I was composing)
Secondly, Reenie is right on as far as the others having a responsibility also. The friends parents should not allow this in their home and I'd be willing to bet that the friend - just like the commercials against drunk driving say - doesn't want to lose a friend.
Do they realize the implications of allowing Andrew to lift weights? I am sure you will be letting them know. A strong positive to this is that Andrew, at this point, may listen more to the peer pressure advising him against it. In any case, it's another of those outside viewpoints which he needs to consider.
Dolly (Andrew's mom)
09-23-2003, 08:53 PM
Allen and Reenie,
Thank you both so much for your thoughts and understanding of our situation!!! You both gave me some very good things to think about!
I figured this rebellious attitude would come eventually, but it took me completely off guard that it came in relation to his HCM!!! I already went through this stage with our 19 year old son. The "I will do what I want to do" attitude. I was expecting it to come with curfews, hanging with forbidden friends, ect........not his HCM restrictions!
Also, we never have caffeine pops in our house. Just because my husband and myself prefer 7-up and flavored waters. So he does not get them here, but he gets them every chance he has that he is away from home. Every afternoon when he meets his freinds at the park by the pop machine :( I know this because every time I drive by to check on them he has one in his hand! No matter how many times i have mentioned he should drink de-caf pops and why.
The forbidden physical activities he is doing while away from home? I will consider what you both have mentioned and try to find a way to get him to compromise!
I didn't discuss this with him any further yesterday after he expressed his "opinion" about all of it. I knew he was in no frame of mind at the time to consider anything I had to say, and to be honest I was so taken off guard by that attitude with his HCM that I didn't have a clue what to say back anyway. So I will think this all over and hope to approach him again with some conversation that might get him thinking more clearly!
Thanks a bunch!
09-23-2003, 09:15 PM
Dolly, you are so welcome. I'm sending prayers that Andrew is receptive when you do choose a time to talk to him. Think about what I said. Pick Your Battles.
09-24-2003, 09:07 AM
You have something to be happy about... he is talking to you and telling you how he feels. When I was his age..well I just did what I wanted and suffered many symptoms that I had never to this day told my parents about (so mom if your reading this...skip it cause you will just get upset).
I would do things with my friends that "everyone" would do and concider "normal"... somethings as simple as going for a hike in the woods... up a large hill... in the heat... then nearly pass out and lie to my friends and tell them I was fine.
I also had my time in life where I thought.."F--- it" I am going to die young so I may as well enjoy what I have. G-D how stupid I was...How much damage did I do... I will never know...but I can look back now and know I did not help myself... I likely hurt myself.
NOW I am educated in HCM, an adult, and understand life better...something that only comes with time.
Dolly - Do your best to talk to him, but understand he needs to grow and find himself. You may want to seek prof. help when dealing with his emotions.
Also (yet unrelated) why have you choosen home schooling? At 14 he may need to be with peers a little more then home schooling allows for? I know many parent are home schooling and the concept sounds wonderful...but I can not help but wonder if the social interaction with peers may not have some value here?
Dolly (Andrew's mom)
09-24-2003, 10:30 AM
The reasons for home schooling Andrew was a life or death decision. Andrew was the victim of extremely serious and violent bullying in the public school. It is a very long and complicated story, but believe me when I say our choice to home school him saved his life. The "social interaction" he was recieving on a daily basis was killing him. Literally!
Not just verbal attacks (being called disease boy, freak, retard, ) on a daily basis, but also being attacked physically. It started with the more common bullying of spitting on him, tripping him, knocking his books on the floor, ect. But this quickly escalated to physical attacks to the point that the injuries required medical attention. His very last injury was a result of an attack which left him with a very swollen chest and bruised ribs and a swollen bruised face from punches. These are just a very teeny tiny sample of what kind of "social interaction" he was recieving at school. If you have never experienced severe bullying, or know anyone who has experienced severe bullying, you could not begin to imagine how it can destroy a child! It can drive kids so deep into depression they consider suicide to escape it! I was NOT about to let my child die at the hands of a mini-terrorist! If their physical attacks wouldn't have killed him the emotional damage would have via suicide!
As of now, he gets proper and humane "social interaction". He sees anywhere from 5-10 kids each and every day after school hours. He is able to pick and choose which kids to hang around with and not be forced to stay with his attackers for 8 hours a day with no escape. He gets more phone calls in a day then I get in a week! Believe me he is not lacking one bit in social interaction. It is just a much more humane, and controllable way for him to interact with his peers! :lol:
I realize you didn't know the circumstances in his situation, and I certainly hope I didn't sound offended with your questioning my choices in his education! :wink:
09-24-2003, 03:47 PM
Wow, Dolly. I'm so sorry that Andrew has had to endure so much. I do hope that his attackers were punished somehow. Regardless, I know you're a wonderful parent and you only want what's best for him. You're doing a great job.
Dolly (Andrew's mom)
09-24-2003, 04:18 PM
A little off the HCM topic here...........
As I sit hear watching live coverage of a fatal school shooting in MN today, just 2 hours away from us, I can't help but think about my above post. Early specualtion today in the MN shooting is that the freshman "shooter" that shot and killed one classmate and criticaly injured another while in school, was bullied and teased daily!
With the severe degree that some children are bullied, some only see a couple ways out. One I mentioned earlier........suicide. The other is getting rid of their attackers.
Today's tradgedy in MN has only reconfirmed that my decision to remove Andrew from his attackers was the correct choice!
And as a side note, it was becuase of Andrew's heart condition and restrictions from "normal" boy activities, that several of his classmates considered him "different, weird and a freak" and therefore deserving of their horrific attacks.
09-24-2003, 04:35 PM
There are many reasons for home schooling...most of them are very good ones, in my opinion, in your case...well I am speechless and I agree 100% with your choice to home school. The only reason I mentioned the topic was due to a family that had a worked with in the past, let me explain the situation...which is 100% different than yours. I am not telling this story for you Dolly...it will just explain why I asked in the 1st place.
The child was diagnosed with HCM. There had been some SD in the family a generation before. The childs parents STOPPED their lives, changed jobs and took the child out of school so they could "have more time together". This child was very stable and remains so to this day. The parents on the other hand have had more issues than the child. The child thereby became "sick" by the way the parents were treating her and she began to have emotional problems, and does to this day.
I guess the point here is...LIVE your lives and learn to do so the best you can...but please do not stop living.
Dolly, You have been through so much as has your son. I hope you think about talking to a professional about some of these emotional issues that have hurt both of you. You and Andrew will be in my prayers... and I hope things get better soon.
We are always here for you!
Dolly (Andrew's mom)
09-24-2003, 05:34 PM
Oh Lisa, I totally understand now why you were wondering! I never gave that a thought. That some might think I was doing it because of his HCM. But, I know what you mean. I do have several email aquaintances that do exactly what you described and completely halt their lives.
We, however, are the complete opposite! To the point where I have taken a few comments from well meaning friends and family, (and even some other people with heart conditions) about allowing Andrew to do some of the things he does! :roll:
Take for example when he crashed his 4-wheeler last summer and did get roughed up pretty bad. I heard those comments "you shouldn't let him ride that!" And this past July when he broke his collarbone while on a ramp at a skateboard park. I really got the "he shouldn't be doing that!!!" comments from people! And when they see how he rides his bike? Oh my do I hear about it! :roll: This is one of those trick bikes that your only purpose for riding is to jump it, flip it and dump it! But I refuse to halt ALL his activities and have always allowed him to do those things. (As much as it makes me cringe!)
So have no fears that we overprotect or don't allow him to do anything!
Oh, and I also wanted to mention that when we removed Andrew from school 2 years ago, we did have him see a therapist for several months. He was so emotionaly destroyed by the bullying I knew it would take a professional to help him recover. Between that and his 2 years away from that terror he has pretty much recovered. And yes, I even used her shoulder a few times! :lol:
Thanks for always being so thoughful and concerned for all here!
09-25-2003, 08:35 AM
WOW, Dolly, I commend you for the path you took for Andrew, It probably did save his life and certainly his sanity.
Nothing is more precious than our children.
You know me by now as we've communicated privately before, I resent when people pass judgement on what you allow Andrew to do. I feel that the teenage years are by far the hardest to deal with no one but yourself can understand your unique situation. It is unique because Andrew is a special kid who's entitled to his own feelings. We tend to categorize people or even catalog them in many instances according to what ails them. In addition, the method of too much "preventive management" can cause considerable psychological damage that can result when a person becomes a social pariah when some people find out about someone's condition. Kids can be cruel when armed with knowledge that someone might be different. Little do they know, they're all different, and if you let doctors lose on them with the arsenal of tests at their disposal today, they will eventually find something wrong with them because what is "normal" taoday has become all exclusive.
Ironically, what has happened to our son Jonathan has been a little different. The kids at his school have been great, but the some of the adults not so great. Some of the administrators are so afraid of lawsuits and they're own hide, that they have made it public knowledge that this kid will not do anything streneous within the confines of their campus. Funny, I find that adults can be so cruel not because they care about the kid but more about the potential liability. That part of society has made me sick to my stomach.
I feel for you Dolly, send me an pm I thought of a pretty good idea for Andrew. I work with high school age kids all the time with regards to their college plans. I know he's young but sometimes a light at the end of the tunnel helps.
09-25-2003, 02:06 PM
You bring up some very good points...
I would like to open a conversation on this topic. PLEASE DO NOT MISUNDERSTAND this as anything but opening up a conversation that really has no "right or wrong" answers.
We all come from our own points of view...some of us with HCM, others not, some have kids with HCM, others have other family members... So here is the million dollar question....
How does a parent/spouse/friend help to protect a person/loved one with HCM from hurting themselves by "over doing it" or placing themselves at higher risk by means of high risk activities(such as competitive sports), while helping them LIVE a 'normal' life?
If you are going to respond please let us know your point of view (ie Parent, spouse, friend... and if you have HCM yourself)
You have a very difficult situation on your hands. Let us know what we can do to help.
09-25-2003, 03:29 PM
Absolutely a great topic to discuss and your right, there probably is no right or wrong answer. This has been discussed since Adam & Eve left the garden.
I'm going to look at this from the view of a parent, even though my 22 year old daughter shows no sign of HCM. There are other teen related activities that fall into a similar categary as the dangers from abusing your HCM. They being use of drugs, driving while impaired, unprotected sex and probably a few others. All could have the same result as HCM if your teen has or does any of these. So natually you don't want them abusing any of them.
Is there a way to protect them 100%, I don't think so.
You can discuss with your teen or younger child until **** freezes over about the end result of abusing any of these and as parents it's our duty to.
However there are a couple very powerful things working against every parent. Teens think they are bullet proof and know more than you. You come from a different era. The other being peer pressure and the need to be part of the group.
They will swear they understand and then go out and do just what they shouldn't. 99.99% of the time they will be OK, but every so often there comes that knock on the door that something has happened as a result of them doing what you discussed. Everyone knows someone or has had it happen to them and it happens to teens nobody ever thought it would.
The key is to always keep the lines of communication open and discuss and educate, discuss and educate over again.
You can let them know your not happy, but never be hostile or harp on them, you'll lose everytime with that approach. Converse with them regularly as an adult, not only about this type of thing and their ears will be more in tune.
So short of locking them up in a cage, you've got to let them go out the front door and hope this time they got it.
And once they go out the front door there is one other tool you can use.
09-26-2003, 12:28 PM
Dolly, I'm sorry for all your son and the entire family have had to endure. I've started to post a response several times and then deleted it. How can I offer advice when I'm so unsure of myself in being a parent in much the same situation? My son never had to deal with the situation in school, at least not that I'm aware of. I must say that our school system seems to be on top of those situations, even though some must surely slip by. I can only imagine the frustration these young people must be going through. We, as adults, are so often inadequate at verbalizing the real problem. HCM is the one he can blame and name, so that's what he focused on. There are so many things to think about and worry about as a teenager, and the future holds so much promise but so much uncertainty. He has a load that others his age don't even have to think about. Then there are some who have an even different or greater load. The tragic loss of his young cousin is probably a greater burden to him than anyone is aware of, and he may not even realize it. We tend to bury those thoughts that are most bothersome and focus on the ones that are easier said. I hope he will be able to talk with you and let you know specific things that he is really missing and specific things he thinks he may miss in the future. Maybe reassurance about just one of those things, or coming up with a replacement for one of those things will open up a whole new avenue of communication. I know focusing on the driver's license was a big one for us. It is always a big step for a teenager, but quite a challenge for us due to the medical clearances necessary. But it gave us lots of things to talk about and plans to outline and procede with. We were working together, he knew we were there with him. The everyday, regular things are taken for granted, so conversation isn't always forthcoming, esp around our house. I'm constantly looking for things to talk to them about. You've gotten a lot of good suggestions from others and just knowing so many others are dealing with similar situations may help. I know you are doing your best and will be there for him. I always try to remember that he has plenty of reason to be angry and he needs to be allowed to express that now and then in an appropriate way. Best wishes and keep us posted. Linda
I was wondering how Andrew was doing. I've been thinking of him as of late. For us, with hockey season around the corner, my wife and I have been experiencing that "weird" feeling in your throat whenever we think about him not being eligible to play. Sometimes, I wish they could revisit "26th Bethesda Conference" recommendations for disqualification because I think it probably is already oudated due in part by recent technological developments, as well as more aquired knowledge.
Anyway, that's a different story and one that might be a good topic of conversation on some other post, but for some kids you can't take sports away from them. The pitfall with discouraging adolescents from general sports participation is that they might still be able to compete in other sports and experience the benefits of participation. An optimistic approach is always important when problems arise in young impressionable athletes, and I'm hoping that someday disqualifying conditions can be resolved or controlled with medical or surgical intervention, enabling future participation. For some of us it would be like asking pigs to fly, but I'm still optimistic that we will figure out a way to keep people active and competitive, while taking away the risk of SCD. Believe me, we've been subjected to a great deal of pessimism on the part of the medical community, and frankly most of it derives from their own fears of legality issues.
Recently, our son completed his "level 1" coaching license from USA Hockey. It allows him to still exhibit his skills and pass on his knowledge of the game to other players. It helps a little for now and keeps him in the game. I've also encouraged him to consider sports medicine in college. He ultimately wants to work with athletes, and has been focusing on the sciences in high school. I don't know how old Andrew is, but let me know if I can be of any assistance with any long term, or short term plans with his education. It could very well encompass his interest for fitness and even weightlifting but in a different light.
Got to go for now, but I would love to help.
10-01-2003, 11:43 AM
Hi Bert, I think it was Dolly you meant to address your message to, but that's OK. My son fit the picture for the message in lots of ways too. When his brother played football(only 2 yrs in HS), he became a part of the crowd by working what I called "the chain gang". He and his Dad kept the yards measured for all the home games and felt very much a part of things, esp since he was still in middle sch. Our high sch football team was very unique in that the team managers were quite often special ed students. The coaches promoted interaction and appreciation of all. The quarterback who was Homecoming King one year, removed his crown and crowned one of the managers (a special ed student) with the announcement that he wanted this person to feel the same glory and importance that he had experienced during his time as team captain, qtrback, etc. He announced that these guys were the real heroes. The new King became escort for the Queen, not a dry eye in the place, and you've never seen a bigger smile on the face of any one person, unless it was his parents. There's lots of compassion and understanding left in this world. I just wish there was less unkindness. Linda
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