Tips on how carers explain things to others

[goldfish.girl]

Hi all,

I'm hoping that other carers can make a suggestion which will help please?

As a quick background, I had a SAH 4 years ago. My son had a brain injury & op 19 months ago. Not an SAH but from personal experience, I can see that the effects of his brain injury are no different to my own.

He started High school last week. I knew after 2 days that he was struggling. I can only compare it to how it would be for me to be dropped at an unfamiliar shopping centre with a list of 6 different shops to find, each one by a certain time & expect me to learn the name of every other customer in that shop. One day of this would leave me floored for a couple of days. It is not something I can do, even 4 years later. His dad said tonight when I told him this analogy that 'he isn't as bad as you are'. I totally disagree, the similarities are there for all to see (or maybe I think I'm better than I am, who knows, I just now that I can see my sons struggle & it looks no different through my eyes) Then I'd have to go back & do it all again every day for a week - with different shops & different customers. As a result my son has cried for the last 2 hours, my heart has broken. He does NOT want me to ask for extra support as this will single him out more when he is already trying to deal with new pupils he doesn't know coming up and asking if he has a 'tube' in his head - cue many jokes that he does not have the maturity yet to deflect or laugh at.

I can use this analogy to try to explain (I know that fellow brain injured people will completely get what I am saying) but how do I make his guidance teacher understand this when they have no personal knowledge of brain injury??? I can give them print outs which explain how hard it is to learn new things whilst dealing with the fatigue this causes which makes learning & remembering even harder.

If anyone has tips or methods they have used to make other people understand the enormity of what the person they care for is going through, I would be really grateful to hear them.

Thank you.

Michelle x

[Gill C]

Lynnes anology of resting a broken leg always seems great to me, you rest for 6 weeks to allow it to heal but a brain is never resting even when you are asleep, therefore how much longer it takes for it to heal. I always refer to info overload as saturation point where you add more & more salt to water until it can hold no more & you see salt laying on the bottom. To me this shows how you can absorb some info but then the brain just shuts down & you can hold no more?

I feel for you Michelle & I absolutely would do everything in my power to make it better but to do that without people obviously 'making allowances' for Dylan is a real struggle.

Take care both of you & give him a big hug from me xxx

[jus]

Awww Michelle...i feel for you

I teach and have a whole classroom full of little individuals.Some of my little people have specific medical needs,others educational needs - they are all different and i feel it's my job to know these things about them so i can best help,educate, and nurture them. It's really difficult when your child does not want special attention (as they see it) however you know this would help him get through each day.

I know in high school they have different subject tutors..so they see lots of classrooms and teachers however could you maybe ask to see his Head of Year so you can explain the situation (he doesn't have to know this), I would have thought that after they have met you and have a better understanding of the struggle he faces daily then they would work alongside you to get an action plan in place that best suits his needs. I'm thinking of you xx

[MaryB]

It is bad enough to go to a new school and high school to begin with for most kids. Just say kids with anxiety issues- that is what 80%?

I have had a lifelong nightmare my whole life of being lost in high school. I know now I think I would have to have a map. I still dream I am in the office several times a day "pretending" I lost my schedule to my rooms but in my dream I cannot remember where I am suppose to go.

I have used large print typed directions with highlighted ( in different colors) routes to each destination while traveling and I did this B4 SAH.

[Macca]

Hi Michelle,

Sorry for the delay in replying - I've only just seen this. Your problem is a tough one. I experience it too. Short term memory loss is a hard one to overcome. There's no guarantee this will work but here's what I try to do.

I think of this as:

"How do I transfer knowledge from my 'short term room' to my 'long term room' in my brain without losing any of it along the way?"

If I can make that transfer I have more chance of retention.

Step one: Do things in small manageable chunks

Step two: Associate names with something significant about that person or thing but that acts as a trigger to bring out what you want.

I find that it isn't that the information isn't in my brain, it's the trigger to bring it out that is missing.

So, something prominent or rhyming or a tune helps ie

Ruby Murray = Curry

One trick Pony = Tony

Blue shirt = Bert

Gimme, gimme a man after midnight (Abba song) = Jimmy after awhile of singing the tune you substitute Gimme for Jimmy and sing the song to yourself every time you come into contact with that person

Every time I try to remember you Michelle I think of a horse (no offence) because of the initials GG or Gee Gee = Goldfish Girl. That's how I remember.

Beach = Sandi

Credit card =Amex = David

Mustang = Sally

CC= Canadian Carl

Temps = Kempse

and so on - but don't try to do too much at once. You may need to repeat this a few times over the course of a few days or a week. It's abit like learning your times tables when I was a kid, but the use of associations seems to make it easier for me.

Like I said there is no guarantee but it seems to work a bit for me, not all the time because there are sometimes when I can't remember at all even with this method, but it takes a bit of extra effort but it's worth it. If there is something visual he can see everyday over a period of time that will eventually be committed to long term memory rather than short term memory. Ie if you ask him to tell you what is in his bedroom, I bet he can remember because he sees that everyday. I feel for you and your lad Michelle . What he mustn't do is give up, there will be some kind of solution, he just has to find the right one for him and adaptit for everyday use. There's no right or wrong answer, I feel, but hopefully over time, his memory powers will increase as he improves.

Three stages of memory, bit like a filing cabinet - memory, storage, retrieval. Put the right labels on the storage, a bit like when you store things in your computer and it's a bit hard to remember what folders you put the information in.

Above all Michelle, listen to him when he wants to offload.

Hope this helps Michelle. Good luck mate.

Macca

Edited August 27, 2012 by Macca

[sallym25]

Dear Michelle,

Your post here today is lovely. You're just the perfect Mum you know. And in order to explain this to the teachers ( "head of year" hopefully ) your own words should be all you need. You, yourself are so good with words, I'm convinced if you just print what you've written here, it will have the desired effect on anyone with the slightest smidgeon of ?????? ( I don't know the word I need here?) Unfortunately I'm your total opposite and useless with words. I do hope you will understand what I am trying to say here. xx

I do know one thing. Poor Dylan having to go through this is also a very lucky Dylan to have the Mum he has. xxx

Sally xx

Edited August 28, 2012 by sallym25

[Macca]

Michelle,

Ditto to what Sally says, Dylan is lucky to have such an understanding and caring Mum - and you are lucky to have him - with your love and support he'll be ok, I'm sure

Macca

[Skippy]

Hi Michelle

Is there any way that the school can give your son a map of the school rooms that he can put with his timetable - he could write the name of his teacher in the rooms that he has lessons so that he knows who will be teaching him. When I started working at the primary school I'm at now - it took me a good four months to know which teacher was which and which room they were in - and I work in a primary school!! Hopefully a map would help build his confidence while getting used to a new school and also make him feel independent.

I have all my fingers crossed that he settles in well.

[Sandi K]

Aw Dylan must be so frustrated! It must be very similar to when we are pushing through our recovery and working despite feeling like crawling back into bed. He'll want to fit in with everyone else and not stand out and be different. It's such a sensitive age.

It must be heartbreaking for you Michelle. You are such a good mom and you must feel as upset as Dylan does. Sally is right, you are so good with words and Dylan is lucky to have a mom who understands how he feels. Going to school is going to be hard for him but with your constant love and support he will make it through. I can't think of a better person to be on his side helping him everyday.

Sandi K. Xoxox

[goldfish.girl]

Thank you all for the support and the advice - there are some brilliant tips, thank you.

Things came to a head yesterday when Dylan got so lost & confused in the building that he ended up with a major headache and had to spend the rest of the day in the 'extra support room'. He was still very unwell when he got home so I had no choice but to take action. I contacted his peadiatric neuro psychologist, his social worker, the school nurse & much to my surprise each one of them has jumped on board to get this sorted. I had been promised lots of things would be in place when Dylan started school but for some unexplained reason this hadn't happened. I have handed in a letter today demanding (politely) to know who took the decision to withdraw this support without taking advice from the medical people working with him

I am really very tired after all this & am going to re-read all your comments tomorrow. Sami/Mary? one of you mentioned maps & time tables with classes and teachers names on. Dylan had this but it hadn't helped so he is now being given a coloured route map showing him how to get from one class to the next. He will no longer be doing a full day of classes but now has 'chill out' time scheduled into his day. This had to happen but I do feel a little sad that this feels like a step backwards. Thinking positively, it may not have to continue forever.

Interestingly, I discovered through this that when I am fighting for my sons' rights I don't forget the words, or get muddled on the phone (usually I find phone calls quite hard) I say things firmly & sensibly. It made me think of people who stutter but don't when they sing. It was a nice discovery but one I hope I won't need to test out again any time soon!!

Thank you everyone, especially those of you who work as teachers/in school for the insider tips (it's hard for me to remember what being in a school was like, it was so long ago).

Michelle xx

[Winb143]

Whatever you and Dylan decide will be the right thing for you both xx

Perhaphs if Dylan remembers am lessons and he calls you if he fogets pm lessons ?...You know your Son so whatever you both

decide it will be okay.

Or perhaps what Sally said. Print out your post and pass it on to teachers,

Good Luck whatever happens

Love

WinB143 xxxxxxxxx............