Back to School 

Back to school. Those three little words fill me with dread each year. Without going into detail, I’ll just say that my children’s (particularly my daughter’s) experience of school mirror my own. That, combined with the early starts, which none of us are good at, lead to a sense of dread in our household as September approaches.

This year, I was more organised. I prepared an ‘information pack’ for each teacher. My son, as luck would have it, came down with a virus the day before school was due to start. So, he hasn’t met his new teacher yet, but I had a quick chat with her and will have a meeting with her next week. My daughter’s new teacher was very receptive to the info. It helps that she taught my son last year. Fingers crossed she’ll read the info and it’ll make a difference.

So, what exactly is in this ‘information pack’. First of all, I am delighted that there are now Irish  charities I can go to for information. The teachers seem to like these more than their English equivalents. I suppose because there are slight differences in the education systems of the two countries.

For EDS info, I printed off two leaflets. They were prodused by Irish EDS and HMS. The first is A Teachers Guide to Ehlers Danlos Syndrome/Joint Hypermobilty Syndrome and covers the basics. The second is Tips for Teachers of Children with EDS/JHS and gives more practical advice.

For information about Autism, I went to a newish charity run by an autistic person, Adam Harris, called As I Am. They have produced a printable school handbooks, and I chose the one called All About Me. It provides boxes to fill in, where you can write about how different aspects of autism effect you, personally. It seems to be aimed more at secondary school students but my kids had no problems filling in the spaces. Though I did all the writing, with them dictating to me what they wanted written. It should hopefully give their teachers an overview of their situations.

Another item I added to the pack was a notebook, to form the basis of a Home/School diary. This is to enable me to write messages to their teachers, maybe about any issues they may have at home such as flare up of pain or fatigue. Likewise, their teachers can write about any school issues, so I don’t end up hearing about them a week later when less can be done about it.

Finally, I went to the fabulous Stickman Communications shop and ordered the “Today is…” Wristband set, one set for each child. They haven’t used them yet as we forgot in the rush to get out of the house, but hopefully they’ll come in useful. Especially as my kids have trouble expressing to teachers how they are feeling.

So, that’s the sum of my ‘extra’ preparations for back to school for my kids this year. Hopefully it’ll make a difference.

This year, “back to school” has additional meaning for me as well. You see, I myself may be going back to school too! I’m seriously considering applying for the University College Cork Autism Studies cert/diploma. Its a part-time course (one year for cert, two for diploma), and I can actually do it here in Galway as part of the UCC outreach program. The application deadline is fast approaching so I really need to make my mind up about it soon. If I do go ahead and do it, you can be sure I’ll be writing plenty about it!

 

[image of the contents of the information pack I prepared for my kids teachers. On the left are printouts of the two leaflets produced by Irish EDS and HMS. Next to that is the printout of the As I Am booklet “All About Me”. Overlaying these is a red hardback notebook, to be used as the Home/School Diary. On top of this are three wristbands, one red, one orange and one green, that form the “Today is…” Wristband set. The background is a wooden floor.]

 

 

image

Advertisements

Charity, and trust. 

I know  a disabled filmmaker, activist and all-round nice guy. He uses a power wheelchair that is unfortunately no longer fit for purpose. His girlfriend set up a Go Fund Me fundraiser to raise money to buy a new one, as the US government won’t help him and he is stuck at home as a result. I, along with many others, happily contributed a small sum towards this, and passed the message on, without incident.

And then, one day, a nasty troll came along. A troll who happened to be disabled themselves. And who insisted that disabled folk asking for a bit of help from their friends, or even from total strangers, was somehow harming ‘the cause’. That it was ‘begging’ and ‘demeaning’. And a pile of other baffling statements.

And it made me stop and think. And remember my pledge, made after the Central Remedial Clinic scandal in 2014 and  the Rehab scandal of the same year. The pledge was to only give money to people I knew and trusted. And not to faceless ‘Big Charity’.

And I was reminded again of my pledge as I read of proposed cuts to the special school my sister went to, while staff from the parent charity stayed in fancy hotels while at conferences. These cuts have now been reversed, for now. But the lack of accountancy remains.

And again as more details emerge about the Console charity scandal.

And so, I have kept my pledge. I donate clothes etc to the charity shop at the end of my street. The owner is Kenyan, and her mother and sister run an orphanage for AIDS orphans there. I have seen the photos, I have talked at length with her. I trust her.

I give money to Katherine, the homeless lady who sleeps rough beside my local shops. I try to stop and chat whenever I see her. I suspect she may be autistic as we seem to have conversations without ever making eye contact. And she sometimes makes inappropriate remarks. But, she’s been sleeping rough for over twenty years, and no official charity’s going to change that. And yes, she may spend the money I give her on cigarettes. But that’s her prerogative. Again, I trust her.

And as for the folks I’ve supported through sites such as Go Fund Me. Or even by direct donation to their websites. These people are not begging. They are not letting down any cause. They simply need a bit of help from their friends. And the one thing they all have in common is they do a lot of unpaid work in areas that are important to me. Some are disability advocates, some help those with eating disorders, some simply write articles that make me think, or make me laugh when I’m feeling down. And again, I trust them.

Might I be a bit foolish and naive? Might some be con artists parting me from my cash? It’s a possibility. But it’s a lot less likely than if I were to trust Big Charity. That much I know.

And so, I’m happy with my pledge. And all that troll has achieved is make me even more determined to help those I can. And when they get their shiny new wheelchair, or pay for that specialist treatment, or even take a well deserved holiday, I will be happy I helped contribute to that.
UPDATE: the filmmaker I mentioned is Dominick Evans, and here is a link to his Go Fund Me. Just in case you too were inspired by a troll!
[image of a wheelchair symbol in black]

How well do YOU function?

If you were to meet me, you might utter the words ‘I’d never know you were autistic, you must be very high-functioning’. These exact words were said to me last week, but speaking about my kids, so replacing ‘you’ with ‘they’.

And today, I’ve been filling out forms, applying for Domiciliary Carer’s Allowance for my kids. If you were to base your opinion of them on what I’ve written, you might say ‘wow, they are so low-functioning, definitely disabled.’ (Though the Medical Assessor might disagree – they’re known for turning people down.) If I were applying for Disability Allowance for myself, I’d get a similar reaction. In fact, when I’ve made clear the extent of my issues, I’ve had people say ‘I don’t know how you function at all.’

So, which is it? Are we high-functioning or low-functioning? It really is a ridiculous question, isn’t it.

Why don’t we ever talk about Neurotypical people based on their functioning level? Is it because, we can understand that the high-flying business executive functioning well at work, is going through a divorce due to his low-functioning marriage? We understand that the unemployed person, who can’t function enough to get out of bed some mornings, has a close group of friends and functions well socially at weekends. We understand that people have good days and bad days. Strengths and weaknesses. And we would not ask ‘are you high-functioning or low-functioning?’ when we meet them. That would be rude!

So, why do people think it’s ok to ask that of autistic people?

Goes back to one of my life mottos: if you would not treat a neurotypical person that way, don’t treat a neurodivergent person that way either.
[image of a pile of forms, for Domiciliary Carer’s Allowance, waiting to be filled in, with a pen on top. ]