Tuesday, 24 November 2015

Hertfordshire Heroines: The ADD-vance Ball

A new website has just sprung up all about Hertfordshire's Hidden Heroines (www.hertshiddenheroines.org.uk) and I instantly knew exactly who I would like to add to the list. Anne Ross and Pamela Reitemeier, you can see your names up in lights at ADD-vance; two Herts heroines in one!
Stephs Two Girls ADD-vance autism
Anne Ross and Pamela Reitemeier (credit ADD-vance)

Their 20th Anniversary Ball was recently held at the stunning Hatfield House to celebrate the wonderful Hertfordshire charity ADD-vance.

ADD-vance was started back in 1996 by the inspirational Anne Ross, who was facing struggles with how her children with ADHD (Attention Deficit Hyperactive Disorder) and Autism were being treated. She soon realised there were other families in similarly difficult situations and she began to man a helpline from her own house to offer help. As a Behavioural Psychologist, Anne also offered coaching to help families in their own homes.

There was such a great need for this help that over the years Pamela Reitemeier joined Anne to make a formidable duo who expanded the offering. The ADD-vance team also expanded, with more Specialist Coaches and Specialist Trainers. Anne has always maintained that her employees would be parents of children with Autism and ADHD themselves, in order to be able to pass on real personal experiences and a real understanding of the challenging situations experienced by many.

Anne and Pamela carried on with the original model of helpline and coaching but also began bidding for funding in order to offer their skills and expertise further, in the form of parenting courses specifically designed for parents and carers of children with Autism and ADHD. Free one-to-one consultations were then added to the offer, along with specific training for educational and leisure establishments and a variety of workshops. I was lucky enough to join the team for a year, at a time when I hadn't planned on returning to work at all, and I helped with general office admin including manning the helpline. From the lovely office with cows grazing by the windows I saw the dedication and passion that these ladies put into the business, and felt proud to be a (very small) part of it. They achieved charity status that year and became the ADD-vance Autism and ADHD Trust. The whole ADD-vance team have helped so many families and children in Hertfordshire by listening and understanding, by offering strategies and support groups, and by educating others.

The Ball was a celebration of the past 20 years and of the future to come. Anne gave an emotional speech in which she explained that 20 years ago there was  no wide internet usage and little information out there on Autism and ADHD - one book published in America which they had to send for. Some might say we've got to the other extreme of information overload these days, but that brings its own challenges of knowing which advice is the best. ADD-vance is targeted, proven information from experienced people and is invaluable.

Her speech went on to talk about how we need to get the message across that Autism and ADHD are massive ABILITIES not disabilities. It's a gift, and many people with these abilities such as scientists, inventors, comedians and actors have made huge beneficial changes in our world. We need to change perceptions of what these people can do.

Many parents of children with Autism and ADHD attended the Ball which the lovely Kacey Ainsworth compered, and we enjoyed the opportunity to relax in each other's company with the shared understanding of how difficult life can be at other times. I had tears (of laughter) running down my face as the comedian John Williams took to the stage; his stories are so real and at the same time almost unbelievable, told in a deadpan Northern way similar to how he writes his blog, My Son's Not Rainman. Descriptions of a Special School Disco and the suggestion that we should all experience one in our lives made total sense to me. We all need that kind of humour in our lives and John was a real highlight of the evening for me.

The other highlights were saying hello to old friends and colleagues, and sharing a table and a dance with other local mums of children with autism and ADHD who I have only met over the past year or so, but who I'm sure will be friends for life. You know who you are ladies, and you all looked stunning. You are all amazing too. Huge thanks to Annie and Anna for organising such an amazing event.

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Sunday, 22 November 2015

Should autistic children go on school trips?

The door was closing as I backed out of our youngest autistic girl's room tonight, and a little voice piped up:

'Mummy, will I have to go on the trip that the Year 6 children are doing tomorrow when I'm that age?'

I'd love to think it was bedtime delaying tactics, but sadly not.

This is a week long activity trip a 5/6 hour coach ride away that most (not all) of the Year 6 children are going on tomorrow. Including youngest's elder sister. Funny that youngest (Year 4) has shown no signs of emotion about it before that second; hasn't seem worried about missing her sister and hasn't wanted to talk about it particularly. Not even shown no emotion, just no real interest at all. Or so I thought.

'Errr, that depends, I guess darling. Would you want to?'

'No.' came back the very definite reply. 'I'd be sick on the coach anyway.'

It's not just the long coach trip which would raise problems though; there are so many other issues to consider for an autistic child. Having to hold her hand until she drops off to sleep most nights is only one small part of it.

I'd offer to go with them, and drive her there myself, if I thought it was something which would be welcomed and make her enjoy the trip. She wasn't keen on that suggestion, and asked 'can I just stay home instead?'

Knowing what has happened when we've tried that before (see my previous post about School Trips), but not wanting to get drawn into a huge discussion about it, I gently replied that she may have to go into school instead, but she instantly refused, saying the teachers wouldn't be there. I pointed out that the other teachers from lower classes would be there, but she said that she couldn't work in a lower age group class, she wouldn't fit in with the younger children.

Although I know this isn't an issue for me to worry about right now (it's 2 years away still, God knows what will happen in terms of school in that time), it does obviously bring up lots of emotions and questions. S is obviously starting to express thoughts she has - who knows how much more is swirling round in her brain?

The post title is a rhetorical question to be honest - of course autistic children, and any other children with any form of additional needs, should go on school trips, if the trip is suitable for them. Whilst I'm all for inclusion, to me that doesn't mean making all the other children go on a school trip 20 minutes down the road just because my autistic child can't cope with a coach ride or with being away from home. I do wonder though, how many other children in a mainstream class of 30 there are for whom the trip is also not ideal - should there be a second 'fun' option/alternative rather than staying back at school and working maybe? Yes, I know that would create a LOT of extra hassle for the school and teachers - but the alternative is children being left out (=not included). I'd love to know if any schools already do something like this? What are your thoughts?

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School trips... should they be compulsory or not?

A few months back, our autistic girl's year group were booked to go on school trips on two consecutive weeks. First was planned to be 30 minutes by train to London, and the second was by coach to some other destination, also not very local.
A few people reading this blog may enjoy this image..... ;)

For the first trip, I kept her off school as she was refusing to go and had extremely high anxiety about the travelling as well as the format of the day (it was to be a walk along the River Thames and a river boat trip back,geography or topic education I believe). As her Mum, I knew there was likely to be little about this trip that she personally would learn from (great for all the other children though), and that there could also be safety issues. We would struggle ourselves to do that kind of trip with her, so to make it along with 59 other children, even with individual support, was asking a lot of her and the TA.

We were then called and asked to take her into school for the day of the second trip, after we explained that her anxiety over any sort of travel longer than 20 minutes would just lead to refusal anyway. I'll admit to not being keen on the idea, as it seemed strange to me for her to be in school and the two classrooms where none of her other peers were, but our girl definitely preferred that idea over the school trip one and so we agreed to give it a go. There were many other issues around this, such as how strange and out of routine the whole day would be for her, who would she eat lunch with and play with at lunchtime when her year group had a separate playground at that stage etc.

However, the whole day ended up being remarkably successful. Could possibly have been because she had amazing individual support, and was given choices over what she could do.... she mingled with the older children in school and achieved that day more than she had any other day in that school year. What does that tell you? Well, what she told me was that it was so much better without all the other distractions, and that in essence the flexibility of the day worked well.

If only she could have individual teaching and do what she wanted every day, hey?! That sounds ideal for children with PDA (Pathological Demand Avoidance), who struggle with high anxiety levels over too many demands placed on them. Is mainstream school the best place for those difficulties?

Thought I would end by including this great mind map which gives ideas and strategies on how to approach children with PDA (these could also work well at home):

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Friday, 20 November 2015

Siblings Part 2 {November 2015}

Time for Siblings Part 2. Still some lovely happy pics, but a little story to go with them this time...

Yesterday our eldest girl (Yr 6) was on playground duty with the youngest ones in school (Yr 3s). She told me how the other two Yr 6 girls with her had not let her join with them, and a younger Yr 3 girl who had been idolising Tilly this week was dragged off to play with someone else.

Then she told me the bit that broke my heart.

'A few of the Year 3s came rushing up to me Mum, and asked me why Sophie always howls in the toilets. I just shrugged, they went away but a different group came back and asked me why Sophie makes funny noises in the toilets. I just laughed and said I didn't know why.'

We talked this over, and I asked if it upset her. She replied that it did at first, and it made her feel a little weird but that by after school time and her telling me the story, she realised it didn't really matter so she wasn't bothered by it any more. She went on to say that she didn't quite understand though, because she thought all of the Year 3s knew that Sophie had autism, so why would they then ask her about Sophie doing unusual things?

The 'Sibling' issue has been on my mind for years now and I've worried lots about the effect that a sister with autism is having on our eldest. There is a national website at www.sibs.org.uk but local support can be a bit patchy. I wrote in a recent post about how Tilly has just started at a great monthly after school session for SIBS, and is really enjoying it.

A couple of years ago I read an amazing book called 'Being The Other One' by a lady called Kate Strohm (available at Amazon if you click the link but most likely elsewhere too!).

It made me cry. It was written by a lady who also has a sibling with special needs (Cerebral Palsy in her case). She interviewed many other siblings of various ages, to let them talk about how it had affected them growing up. It's not an easy read, but it is a good one in terms of trying to understand what might be going on under the surface, particularly of a young child who has not yet learnt how to talk openly.

The author looks at the siblings' feelings of isolation, grief, anger and a huge amount of anxiety. That anxiety is not just over the embarrassment of being seen as different because of that sibling sometimes, but can also be a worry about making life any more difficult for the parents. The book also offers lots of practical advice around what parents can do to help their neurotypical children (long word, basically means those who are developing typically).

Just last week I posted a story on my Facebook page about one particular school day:

'While I was brushing my teeth, our amazing eldest girl took it upon herself to try and motivate youngest (PDA) girl to get dressed for school this morning so we wouldn't be late.

She knew exactly how to do it; eldest is having a friend over for a playdate after school, so she offered youngest the chance to play with them both in her room for half an hour if she got herself dressed. I'm actually quite amazed it worked, but it did, obviously because there is nothing more youngest wants than to spend some time with eldest and her friend. Which is quite sad in itself.

The issue will be after school, when eldest suddenly twigs that she is going to have to carry through with this reward; when she really wants to play with her own friend in that way that 'typical' children can, and without having to be extra careful to make sure all goes OK for youngest to avoid a meltdown. Sigh. I'll be around (and by that I mean right there) to offer alternatives and ensure all goes as smoothly as possible of course, to make sure eldest isn't in tears before youngest...'

It was such a lovely thing to do to try and help, and demonstrates not only how well eldest 'gets' it, but also how well she can use the PDA strategies - she told me she made it 'fun', used light-hearted phrases etc and that she knew it might not work but she'd let her play anyway (not what would usually happen!). Kind of sad that she needs to, really; I know how stressful it is to always be one step ahead and I don't wish that stress on any other parents, let alone a 10 year old child frown emoticon

As you can see from the pictures though, it's not all doom and gloom around here. They have fun, they fall out, they play Minecraft together, just like any other siblings. I wouldn't have it any other way.

This week I'm linking up with the lovely Victoria over at #PoCoLo.

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Thursday, 19 November 2015

Siblings {November 2015}

Hardly any words to go with this one.. but do watch out for Siblings part 2, coming soon....

Siblings Nov 15

Linking up with:

dear beautiful
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