Sorry I haven't been keeping up with all that has been going on with everyone.  [smiley=ops.gif]

I do have a question for those of you with teenagers with MM. It has been 5 years since Tylers surgery and although he has been doing great I find I have trouble giving him his independence.  He is going to be 16 in a week and a half and I think he still has fears of another stroke as well as do I. How do you get past that fear and let them go?

Tyler has about 75% use of his left arm back and blends in with the crowd pretty well. He does cook and clean and all the things all other 16 years olds do, even if I have to get after him about it at time...LOL. However, he is afraid to be home alone for very long. Since I was in college we didn't always have a choice on him being home alone, but I still found myself full of anxiety till I would see that he was ok when I got home. He also would call my cell phone just to check on me and the time I was coming home.

Any advise anyone has on this would be greatly appreciated.

Also, Tyler refuses to go to therapy or do his excercises and his hand is losing ground. Does anyone have ideas on how I can encourage him on this matter also? I realise that he had been in some type of therapy since birth, and was just getting away from it when he had his stroke, so he can very well just be tired of it and need a break, but I hate to see him lose use of his hand now. [smiley=confused2.gif]

Now for a lighter update about the rest of life...lol

I graduated in May, and although I was unable to complete the teaching certification program, I am still following my dreams of becoming a teacher, just using the backdoor ;) My daughter just got married a few weeks ago and Tyler was our videographer. He did an excellent job and with practice may be able to do it professionaly someday, if he so chooses. [smiley=thumb.gif]

Hi Rena,

I wondered what happened to you and Tyler.  Glad to see you on the board again.  Sounds like you have been very busy with school.  I know you will follow your dream and be a teacher.

I don't have a teenager anymore nor do I have a child with MM. I'm not a clinician but I know as a mother how hard it is to let go of your children and especially if they have been through all that Tyler has been through. On the other hand, I know how Tyler feels about not letting you out of his sight because you are his caregiver and protector.  It is a mother thing to protect your children and it maybe that Tyler requires your protection.

Maybe start out by letting Tyler have a little independence and move toward increasing his independence.  Sometimes we have to take small steps to make big strides.

I would also ask Tyler why he doesn't want to go to therapy.  There must be a reason and you should know what that is so you can deal with working on whatever is keeping him from going to therapy.

You know that anything could happen to any one of us at anytime.  At some point, Tyler should realize that he has gone a long time without a major incident and that alone should remove some of the fear of venturing out independently. It may be a good thing to get Tyler some counseling. He may very well have a real fear of something happening to him and he needs guidance on how to overcome that fear.

Tyler's independence depends on what Tyler is capable of doing on his own.  I don't know if he is able to be totally independent or not. Depending on his capabilities he may be limited to how much independence he can endure on his own.

Certainly, it sounds as though Tyler has a real fear of leaving your side and is very hesitant to venture out and take some risk. My personal opinion would be to consult a professional for guidance.

It appears Tyler has found an interest in photography and video since he videographed his sister's wedding. That interest could be the one thing that will play a part in him venturing out and becoming more independent.  If he likes it and he is good at it, perhaps it will be his profession.  Maybe Tyler could take a class in photography or work part-time at a studio. I really think he needs to do something independent of you if he is capable meaning......something on his own wherein he doesn't rely on you for everything and realizes he can be independent and nothing horrible will happen to him. Once he realizes he has abilities and nothing has happened to him in your absence and he is assured that you are only a phone call away, he may be more apt to venture out and take a some risk.

I want only the very best for you and Tyler and I hope you can find a way to work through this.  You both deserve to be free to live life to the fullest each day.  

It was good to hear from you and keep us posted on Tyler.

Hugs,

Lore    

Thanks Lore,

Maybe I just needed to hear from someone else on the matter. I know Tyler has plans for college, although he is unsure of what direction he wants to go. He also talks about when he is old enough to live on his own. It just seems he still has fears and such. Which I understand, but want to help him overcome.

Once again Thanks!  [smiley=hug.gif]

Nice to read an update on you guys. I'm right there with you on the independence thing it's really hard.i can't give you any advice really Kathleen is only 10,we take one day at a time and I try to folow her cues(she'll tell me when to back off).And it's then that I sit on my hands and bite my tongue and try to back off. It's ahrd not to have that feeling that something may go wrong and they may have a stroke or seizure so I keep quiet and just watch.I'm glad Tyler has been healthy,and he's found an interest that excites him.
 That's awesome about school for you! teaching has alwasy been a dream of mine too.Thanks for sharing an update.
Mary Grace

Thank you Mary Grace. I do my best to just take one day at a time and such. I guess it is just harder somedays over others. It doesn't help that Tyler is ready to get his Drivers Permit. :o
Maybe that is my biggest fear????

Another Question:
How do you know if special adaptations are needed to a car? Do I just see what Tyler can do with the controls that are left handed and talk to a doctor about it? Is there someone at the DMV I need to talk to? Heck I know how lucky Tyler is to even be able to think about driving, I just want to make sure it is a safe experience for him.

  Driving!!! That is scary! My son will turn 16 in November which means he can get his permit,I'm not at all ready.My oldest daughter has had license for a few year now and it doesn't really get too much easier.As for adaptions I'de probably start with and OT.? If he doesn't still get OT,maybe an evaluation by one would help.We just started an OT program over the summer at a local hospital to just work on Kathleen's left hand and arm.She's doing great with it and already making progress.Up until now she hasn't had any functional use of it.Kathleen was born with Down syndrome also so she too has been in therapy since she was just weeks old. I try to seek different therapies and therapists so it doesn't get "old" for her.We also try to keep it fun because she's so young.Has your son ebvery worked with a "personal trainer" ? Maybe this would seem more like something a "typical" 16 yr old would do as apposed to therapy.My son works with one for football training(he's on the high school football team this year and they have a trianer that works with any players that want to),and the triainer actually said he would work with Kathleen if we wanted.I wish I could help by saying don't worry but we do anyway. Good Luck and keep us posted.
Mary Grace

Hi Rena -

Nice to hear an update on you and Tyler!  Congrats on your graduation!

I don't have much input regarding Tyler's independence as I am not a parent my self...but as for Tyler's interest in videography - well, I can tell you that that is what one of my brother sdoes for a living...so maybe you can put this thought into his head!  

My younger brother, Jason, actually works for the school district where we went through grade school...he video's all the school events from sporting events, band competition, proms, etc.  He also runs an club where the students can learn all of that stuff too!  

Just some food for thought on giving Tyler a direction if that's what he wants...

-Shari

Mary Grace,
Thanks for the ideas about getting Tyler evaluated for driving.

Tyler was born with very mild Cerebral Palsy that affected his right side mainly. At about 5-years-old he had enough strength that it wasn't so noticeable anymore. So until he was 11 we saw the right side as his weaker side, not noticeably so, but just a bit weaker. His stroke affected his left side, so that all changed dramatically. As I mentioned before he has some use of his left hand and arm back, but his fine motor skills suck.

Boy do I look at things differently, when thinking of Tyler and his abilities. I have noticed the different ways car manufactures make their controls. For example one friend of mine has a truck that has a large button for the light control, Tyler would have no problem working this with his left hand, but the windshield wipers take fine motor skills to turn on. Of course turn signals will be no problem. I guess I can tell Tyler to only drive when it's not raining :-/ Just joking, that would be aggravating for me, so I know Tyler would be mad if he got stuck somewhere because of rain, especially if he were just few blocks from his destination So adaptations are the only way to go to be safe.

Shari,
Thanks for letting me know of yet another job a videographer can do. I try to point out to Tyler all the things he does well, so he can see the variety of job possibilities. Heck, just because his body doesn't work like the average person doesn't mean he can't be a productive part of society.

Most of my experience in education is working with the special needs population and we always focused on abilities to teach the students/clients what they can do, not make them focus on what they already know their bodies won't do. Heck no one had to tell me I would never be a sports star, and we never had to tell Tyler that either. We all have things we just weren't meant to do and things we excel at if we work at it.

Rena