Hello,
I am new to this site and very encouraged by the personal testimonies and positivity given to those who are new to this experience.
I must say that this has been an emotional roller coaster for many people involved in my sons life. It has been hard for me as his mother especially because I cannot protect or heal him from what he has had to endure and is still going through on a daily basis.
We just returned from Ashville, NC on a trip to see our family. This trip proved to be too much. He was far more emotional than I have ever seen him in his life, pre or post the AVM. The first sign that he was not comfortable with the situation is when he refused the walker or wheelchair and decided to walk on his own (with my help). He did not want the ones he loved to see him dependent upon me. He also cried more than ever. He had a complete meltdown in the movie theater too. I think that he has realized what he has been sheltered from by being in the hospital and in our home. Being in public kinda brought it home for him where he realized he was not the young man he once was before his surgery.
My son just had his AVM removed March 28th of this year and I realize it was somewhat premature to take him on a road trip. I am just unsure how to help him other than what I have always done which is staying positive and encouraging him with scripture. I don't want him to feel this way but do not know how to prevent it without completely sheltering him and making him feel isolated by society.
I want the best for my son and pray for answers. Thank you everyone for your input.
As a mother I can't imagine how difficult is must be to watch your chld go through something like this. I applaud your strength. Being positive and encouraging is great. My husband refused all negativity around me while I was still in the hospital. You are right in that AJ is still very early in the recovery process. Bleeds and brain surgery take a very long time to recover from. I understand his feeling emotional. For me the first time the reality of what had happened finally hit me after I was released from the hospital and rehab. My husband had taken me to a grocery store. I felt completely overwhelmed, scared, nervous, embarassed all at once. It's probably going to take a bit more time for AJ to be able handle things like the movie theater. (that's still not something I can do very well) Over stimulation is a big issue for most brain injury patients. It can feel like everything is bombarding your senses at one time. Over 4 years after my bleed and I still have problems with this, although it is must better for me than it used to be. Let AJ tell you if he is feeling up to something and be prepared to take him out of a situation in which he is feelig overwhelmed. I can't tell you how many places my husband and I had to leave, once in the middle of dinner. An injured brain is fragile and over stimulation will completely zap every ounce of energy it has. Allo AJ to rest as much and as often as he needs and wants to. He's young and healthy and strong. I've no doubt he will improve by leaps and bounds. It will just take time.
Hi, AJ's mombre, my heart goes out to you and your son. Sixteen is a really tough age to be going through this. Adolescence is all about defining yourself, and AJ's has had such a profound change to his sense of self -- it's going to take some getting used to. Do not attempt to shelter him, but do seek counseling for him. In some ways, it may be easier for AJ to come to terms with this with the help of someone who didn't know him pre-AVM. It may also be helpful for AJ to join the Teens with AVM group (http://www.avmsurvivors.org/group/teenswithavms), so he can share his feeling about this with others his age who will understand. Best wishes!
Hi,
Trish is absolutely right. She is full of good info! Let your son notice, find and respect his limits. Encourage him to take rests throughout the day. I was also 16 when my brain ruptured. like everyone else I just had to learn to be hyper aware of when I was feeling overwhelmed - too many people, too much noise, (e.g. the tv, the radio, people talking,shops, busy places). He is young, he will be fine. As dancer mom said, also, counselling may help - from a brain specialist. Try not to worry. I hope that is of some help to you.
Best
flower
such a rough time for him, but definitely build on his successes slowly and do things in the morning when his energy is best. His brain will take along time to get used to activity and noises, stick to the quieter and less crowded options. Over time, he'll likely get used to it. Pick fun things for him. My suggestion is to get out to a movie often, but pick an early afternoon one and comedies so it's both quieter and shorter. For sports, focus on whatever he likes that he can still do.
exhaustion and frustration are part of the process, and it's no fun to deal with either. Eventually, I took ritalin for about a year or so and I loved having my energy back and it helped to do my exercises. It was like getting an IV drip of coffee. I miss it.
failures will happen, learn from each and just keep moving forward. blessings!
My husband is 34 and had his bleed on Feb 19th. He has gone through similar emotions although he has concealed them for the most part. About two weeks ago, i took him to the barber shop for a haircut being he had not had one in 5 months. He broke down in the barber chair which was im sure very embarrassing for him. It was challenging struggling to move around in a walker and fir people to see him this way. We live about six hours from our families and he does nit want to see any of them until he is walking independently. So aside from my mother who has come to visit twice (i had my first child 2 days after we got home from the hospital), he has not seen anyone. The only time he leaves home is to go to doctor appt or therapy. While i have tried to encourage him to go out, he does not want to, so i am trying to respect his healing process and just be here to support him.
Hi Sian,
Sorry you both have to go through this. He's going to cry once in a while, only worry if it becomes frequent.
I was 34 when i had my big bleed, it's tough in your prime when you are really busy in life then suddenly it all changes. Tremendously stressful for sure. Poor you, with a young baby too, but such joy in a new baby too. God bless you both.
Just wanted to thank you all for your input and advice. I am slowly realizing I have so much to learn.
I’m sorry that both of you have to go through this. I think he is grieving for the man he was before the surgery. I know I shed a lot of tears about the old me. He is still early in his recovery process (4 months) so he will make a lot of progress. I did out-patient (as well as in-patient) physical therapy, occupational therapy, and speech therapy. Trust me, it will get better with time. Trish is correct in saying that too much stimulation to the brain can be irritating. The book “My Stoke of Insight…by Jill Bolte Taylor” is helpful to read. It was the first book I listened to on my kindle when I came home from the hospital. I had to re-learn to work the kindle, the remote to the TV, and the computer. The computer gave me the most trouble and I was proficient on it before the stroke. I even had to ask my son how to write a check. I wish the best for you and your son.
Hi Mombre (I love that nickname)
No one expects you or AJ to have all the answers or know the limitations so soon. I suggest you take one day at a time, keep life interesting, and try to keep adding adventures. If you try something and it isn't going well, you don't have to follow through, regroup and redirect.
Find what AJ loves and try to work it in. Loves football--can you pay some extra and get all the college football games on your tv for the fall? I just saw an ad locally that for $40, you can get all the college games here.
Is there something he can work into to support his old team? Manager, film editor, ??
Best wishes to you both. His / your faith can be a great tool for both of you as well.
Ron, ks