Hello and thank you for letting us be part of the group…my son had his first surgery in 2014 at boston childrens hospital the mass was pretty big but it was removed and Hunter bounced back pretty quickly…not so much almost a year later in 2015 we were back at the childrens hospital for a second surgery this one was 5-6 hrs long, he had a syroke so when he woke up he did not have use of his left arm. As the time went on in the hospital before we left he had movement of his arm back. But since the second surgery academically he is just not there, he is failing all of his subjects and hes not up to were the other kids are in his class…so they will be doing a couple tests in school and they will also give him a physc evaluation as well at amhc. I feel so bad that he has struggled like this we thought he was being lazy when in fact he doesnt know what hes doing…he has a hard time remembering things etc. Hopefully we will get some answers to this soon.
Doesn’t it make sense that he’s struggling? After all, he’s had two seperate traumas directly to the brain – I would say he’s had sereve brain injuries! not to mention the stroke – even though the surgeries were to fix something else there’s no way the surgeries themselves didn’t cause fundamental problems.
Would it help to rethink what’s happened to him and think of him as having several closed head injuries? He’s not the same person any longer so of course his abilities have changed.
Age is on his side, though, still being in school his brain is super elastic and able to reroute connections much more quickly than an adult. Hang in there! Keep working!
Thank you…and you are definately right, was just really going by what the school was saying that he was basically lazy and didnt want to do the work. He is now attending a new school and is failing every class, hes not at the same 7th grade level that the rest of his class is at, even his maturity level is not were it should be.
If he’s struggling to remember stuff – if his short term memory is a bit trashed – or if the part of his brain that moves stuff from short term memory into longer term memory is trashed or confused, then I’m not surprised at all that he is struggling.
It sounds to me like you would do well to get an assessment of the difficulties that he has, and work through what the methods of coping are. I think a neurologist might help with that (but I don’t know anything in this space). Without some coping strategies, he is just going to keep on struggling. In fact, it could seem really unfair to him that he is in the state he is. He may well need tons of support and encouragement that, as Azurelle says, he’s had major trauma, he really should expect to be in a different place, and he is going to need help to get back on the rails.
Very best wishes
Hi there. What was school like for Hunter prior to his surgeries? It sounds like there is a dramatic difference in his abilities since then. This is very common. My daughter had an AVM rupture and 2 surgeries (2017 & 2018). She used to accel at school and now she has difficulty especially with math and abstract reasoning. Before she left rehab she had a full neuropsych evaluation. I would ask if this is what they’re planning to do for your son. A regular educational psych evaluation would not be as appropriate assuming his struggles are not due to a learning disability but instead due to brain injury. On my daughter’s neuropsych report several recommendations were made with regards to how she would best learn and accommodations that her teachers should make. These include simple things like making sure she sits close to the teacher but also get more sophisticated like using multiple choice or matching question format as opposed to open written response because she has working memory problems. The report is super important for the school when developing the child’s IEP. Hope you see better success after he’s assessed.
We are going through the exact same thing right now. Our daughter had a Cerebellar AVM rupture September 2017 , right before her 8th birthday. She is currently in 3rd Grade. She suffers from short-term memory loss, slower processing speeds. She becomes easily overwhelmed. She breaks down during activities that require sustained mental attention and is more impulsive. She is apathetic, has reduced motivation and prefers not to be in social situations. We are in the process of getting a full Neuropsych eval. She didn’t possess any of these qualities prior to the AVM rupture and I am being told that much of what I am describing is normal for children with brain injuries. You need to be patient with your child and realize that they will likely grow out of many of these things as they continue to heal. A neuropsych eval will teach you what exactly their weaknesses are and what accommodations you can make at home and at school to help support your child. These children have been through so much and the last thing they are is lazy. They didn’t chose what they had to experience at this young of an age and they are all walking miracles. There is a private Facebook page and specific thread that parents recently addressed this very subject. If you would like private message me with your name and I will add you to this support group as well. Sending strength and love your way.
Sorry to hear this about your son and the fact he has had to endure so much at such a young age.
I can say I have felt after surgery to have my AVM removed I do feel I had lost some of my skills to learn or pick up on things I was pretty good at prior to undergoing surgery, so I can relate… Its a process but slowly he will pick up and you have to remember that having such a surgery does affect the brain and we do suffer trauma from it, which is normal… as they say things heal with time and I would just be patient with him and get him as much support as possible… God bless!
Hello.hunter did very well in school prior to his surgeries. He has no concentration he doesnt remember the steps he has to take next. He does get upset easily, but we are working on the testing at school as well as the pysch evaluation as well just waiting on the appt for that. Hunter basically needs someone with him all the time to do school work, he has adhd on top of all of this as well, im really looking towards a mentor but i will fight for the help he needs.
Thank you I would love it. It’s missy ham.
I was trying to remember something, and you put it in your notes, it was neuropsych testing. The neuropsych evaluation was very important for me. The evaluation measured different parts of the brain and how well they were working. I found out that some skills were bad and some were good. The doctors explained it was like having a knee replaced and knowing I could no longer run a mile.
I had my ruptured AVM when I was 15 (I’m now 34)and I had the same issue. My learning ability changed a lot and my ability to read and write well changed a lot as well. I would agree that the correct IEP is critical for the child’s success! Push for what the child needs and find good administrative support in the school. I had accommodations and I even took classes like study skills that allowed me more time to work on class work. To give you all encouragement I continued to see improvement over 10 years post the rupture and I finished high school on time as well as went to college. It isn’t easy but the hard work was worth it. Each of us have different goals small or large and having those goals helped me to push myself
Hey there! One resource you may want to check with is the ADA https://www.ada.gov. They may be able to put you in contact with your schools staff dedicated to helping! Grace and peace.
Hi Mod, I went through 2 open brain surgeries after AVM bleed (7hrs each.) My immediate effects were emotional and they continue. It’s true the surgeries are traumatic in every sense and there is scar tissue (for me emotional and physical causing epilepsy.)
The good news is that even if he is bad academically it doesn’t have to affect his quality of life at all. A plumber/carpenter…in our society can earn a good living and plenty of self/public esteem. The hard part for me was/is dealing w/ the perceived shame of “failure.” Believe me college provides plenty of debt and very few practical skills, so if he avoids that in my opinion it’s probably a good thing.
As far as failing academically at present, the chances are that he can catch up if he doesn’t give up. I keep a personal journal and it helps me work out hard stuff in my life. And nobody is going to critique it for grammar/spelling. Even drawing and scribbling is a good daily practice. I recommend buying him a journal and encouraging him to write even a sentence a day.
Also, please don’t be over-protective even though it is a mother’s natural reaction in this situation. You need to fight with yourself and let him take risks and succeed/fail on his own. Only in this way will he develop courage and self-reliance. He’ll find out by himself exactly what other kids’ and school criteria is worth (very, very, very little.)
Keep up the good work (he sounds like a fighter.)
Any teacher making such statements about a child who had suffered 2 strokes sounds like a total asshole.