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AVM Survivors Network

How to help my family to understand


#1

Hi all,
I’m feeling hurt and really bewildered. I would appreciate some advice on how to manage my adult family not understanding the complexities of the impact of brain damage on my family unit. I think the believe I make too much of my daughters brain injury because when they have seen her over the course of a two week holiday she seemed “just fine”.
My daughter had a ruptured AVM 18 months ago, with an emergency embolism of the AVM and then gamma knife in December. It was just before her 12th birthday. She was that popular kid…kind, smart, wise, talented and funny. She is now 13 and has done an amazingly well to build herself up. She’s a fighter. She suffers from fatigue terribly, even now. She has struggled with depression. Last September 2017 she tried to return to school, but just couldn’t cope. We made the decision to homeschool and set up art therapy and a wonderful tutor who was able to work with her on the days she was up to it. We made sure that friends were constant and in touch. We took the approach of slowly, slowly. Over the summer she really turned a corner, got roses in her cheeks and was working hard on building her stamina by doing a little exercise most days. It was amazing! We prepped the school and her friends for her transition back to school. Our plan was to reintegrate slowly and she was tentative but excited. Sadly the school was a bit flat footed on how to manage their expectations and her friends subtly excluded her. She has been miserable, her fatigue has grown to be debilitating and she is down to just listening to audio books, insomnia has returned, and all the other usual hosts!! She did one hour of schooling last week and that was to see the school counsellor for the first time. I have two other children, one who is a teen with bad dyslexia and anxiety who is in her GCSE year, so takes a lot of management, the other who is a young boy. The added time constraints of having no schedule and running back and forth to school have been huge. We are emotionally, mentally and physically worn out. I don’t need to explain that to anyone here!
My husband and I are trying to work out if it might be best to homeschool her again and curate what we know works rather than pursue a school life that doesn’t fit with her needs anymore & that seems to be just NOT working, then review in a year. Of course this decision has many consequences. We would have to continue to pay full school fees (a long story but she was put into the same school to support her sister BEFORE her AVM ruptured), for a child not really attending plus continue to pay for extra therapy and the support she needs. It would mean my not going back to work. We are struggling. Putting them both in private education was a huge financial decision and we have had to make many sacrifices to do it. Now its even harder.
I understand that they are being protective of me and that it comes from a good place but my sister is telling me that she has to return to school, to tough it out, that my daughter is manipulating my emotions, that this situation is not sustainable, that she should just change schools. I’m unsure how to respond to this without sounding defensive. Also fellow AVM’ers I am so full of grief and daily sorrow and so much of our life is upside down, that I do doubt my judgements. I am away from my family and we moved to a quiet country town to aid her recovery, so my isolation is amplified, more so being her carer. I would so welcome some considered advice, on if you feel she is correct, or how to make my family understand in a way that is not defensive or angry.


#2

Wow, you have had a tough go for sure. As a care giver I can’t offer much as in my case it is me with the AVM, however I am a parent. So being a parent of a 14(soon 15) and 13 year old and knowing the impact of an AVM on me I can relate to some degree. The fatigue component is something that I would not understand if I hadn’t experienced it, my friends and family while supportive don’t get the difference between that and tired…it was debilitating for me early in my recovery, luckily I’m past most of it. As parents we want the best for our children, combine that with the AVM experience I don’t believe others will understand including family. My only advice is to continue to support your family as is clear you do, and encourage your daughter to be as open and engaged as possible in decisions that will impact her. I wish I had answers but I don’t know if there is one from anyone other that the caring parent that you clearly are. Take Care, John.


#3

hello @Cushyb and welcome to the group. I am so sorry about your daughter.
I am glad you found this site, feel free to vent!
I would explain to your family that your daughter had a very rare health event. A bleed is painful and I believe is equal to a stroke.

I have been both the patient and the care giver and I think it is way more stressful to the the caregiver. Esp of a young one.

I kinda had the reverse where I had a rare stroke first then later got an AVM - I am almost 8 years post and still have pain in head 24/7 but I really think its from the stroke.
They were not able to get all of my avm so we just keep watch.
I used to be able to sleep but since all my health issues I cant -
Medical marijuana gummies help me some
I live in San Francisco so its all legal here.
I used to work in trading and could not handle the noise and fast pace so I could not go back to work.
I get botox in my skull every 3 months which takes the edge off otherwise I would not get out of bed.
Its pretty clear to me between this support site and my rare stroke site CVST that drs are not prepared for the type of head pain we describe there is not medication to really address it.

I would tell your daughter its ok to cancel and to tell people she cant do something that her health is the most important thing.
Hugs
Angela


#4

Cushla

Hi. It’s great to hear from you, though I wish it were in much, much better circumstances. I would encourage you that you’re doing brilliantly, because it really sounds like you are, though it does sound like it isn’t sustainable.

The only thought I’ve got to add to the mix is really holding the school to account. It sounds to me as though she has special educational needs and ought to get a Statement of Special Educational Need completed. It is that which might force the school to actually pay attention to her needs.

On the other hand, what I think you’re saying is that your daughter has rather gone back into her shell “simply” because her school friends have somewhat unfriended her. In that regard, I’m not sure what the school can do / would do to get everything into a much more supportive situation. Maybe if they were able to get funding for a learning assistant through the Statement process, even for part of the week, your daughter could have an advocate for herself or a person to talk to / gain support from until she is back on top of things. It sounds like she just needs someone on-side and you need it not to be only you.

I don’t know if this would work or how to get “statemented” but I’ll see if I can find out. Definitely talk to school and your GP about how it happens.

… just an idea.

Lots of love,

Richard


#5

It looks on first reading that contacting the Local Education Authority might be how you get statemented. I’ll look more widely tomorrow.


#6

Thanks for your advice and support,
The main problem she has is fatigue and dealing with the noise at school. Her fatigue has really knocked her about and consequently she feels very despondent by her situation, as she wants to do so much but is unable to. I think the friend situation amplifies her unhappiness certainly, but she has a good network of friends outside of school who are constant.
I have asked for a statement from GOSH to make an application to Dept of Education.
She has another scan in December, and I do wonder if perhaps she may have some side affects from the Gamma-knife which may be adding to her fatigue.
Her doctors are concerned about her fatigue still being so debilitating and have suggested a sleep clinic. I don’t see that as a solution. I think it is depression and anxiety, which is a far more complex!
Are there other children that have found school unmanageable? I would love to speak with other @ParentsAndCarers.
Love to all,
Cushyb


#7

Hi cushyb,
In regards to what Richard is saying about trying to get a statement for your daughter, first steps to get the ball rolling is to speak to her schools senco and raise your concerns with them. They will be able to advise you on the procedure that they have to follow to get a statement granted, I know it does take months for the local authorities to grant these, I’m not too sure how this works in private schools as I work as a sen learning support assistant in state schools . Also having the backing/report from gosh will help support her application. I myself have suffered a bleed and craniotomy in May 17 for a right temporal avm, before hand I had two doses of gamma knife which made me extremely fatigued. I could sleep for 12 hrs a day and still be tired, I’m not sure if the fatigue is caused by the avm itself as I was fatigued before the gamma but gamma seemed to have made it worse.


#8

Hi Amanda,
Thanks for your advice. I’m so sorry that you have been through such a traumatic time.
I presume the gamma was not successful, hence the bleed? Was that May this year? How are you getting on now?
I have asked GOSH for letter to support my application, and they do have a SEN teacher at the school so I will ask her advice on how to start the process within the school.
Love,
Cushyb


#9

School will probably say a Statement is not needed but I think its a good thing to push for, and Amanda may be able to give pros and cons. (I don’t know of any cons). Meanwhile, if they say “no need” for a statement, just push for the right kind of support for your daughter. When you get to having a Statement, I think that will help cement things and may well bring funding for the school.

I did note your comments about the fatigue. I don’t really know what to suggest but I agree it looks like a big part of the picture to work out.

Let us know how you get on and if we have any other ideas, we can keep helping the best we can from this far away :slight_smile:

Lots of love,

Richard


#10

Hi,
I will ask my senco on Monday for some advice and will pass it onto you regarding how statements and extra support works within schools. I support both children who have and haven’t been given a statement, I’m assuming it is being funded from those who have been given statements. My bleed was last last May 2017 and yes unfortunately my bleed happened just after a year from my second gamma treatment, they were not sure why it happened just one of those unfortunate things I suppose. I am doing well now thank you, I do have poor short term memory and suffer with anxiety which I’m working on and a loss of appetite but I could of ended up a lot worse,so I am thankful for that. I am now back to work full time,working with wonderful children that are both challenging in their behaviour and those that just need the extra support to just make it though the day without hitting crisis. In a way what has happened to myself has made my job a little easier as I understand the frustration that children face due to the hurdles they are facing in life , to me the key is having patience and learning to adapt to each child’s individual needs, your daughters school should have people like this to support your child’s needs and put interventions in place so she is able to reach her full potential.