The Education for All bill and choosing a secondary school

 

The new Education for All bill, referred to in The King's speech, sets out some big ideas for world of education in the UK.  If you have any any experience of a SEND child in education you probably know that the current system is highly adversarial.  It feels like a child has be failing to prove they need support, and then you battle for two years to get that, whilst competing with other families for the one school place that could work for your child. 

And that's just the start.  Could this new bill make a difference? It has some old ideas (more mainstream inclusion) and some new ways of trying to support this.  There are a few years before it all happens but schools may start looking a bit different and if you currently have a child in primary with SEND or an EHCP you'll be thinking about secondary schools sooner than everyone else.  What can you do to help with your decision?

Helping my autistic son prepare for exams - creating steps

As my eldest heads towards the end of his time in secondary school, I'm running a few posts to support kids in the run up to their exams.  Today it is about breaking things down into smaller parts. 

How anyone can support a parent of SEND kids

Being the parent of children with additional needs can be a rollercoaster ride; ask any parent in this situation. It can be the most unique and rewarding experience of your life while simultaneously being the most exhausting and challenging thing you have ever done.

Designing a new bedroom for my autistic kids

None of our children sleep great. Estimates say between 50% and 90% of autistic people have some sleeping difficulties, whether that's going to sleep, staying asleep or sleeping at the wrong time - and that's just when things are normal.  And sleep is just one function of a bedroom. When it comes to our autistic kids there's lots to think about. 

The wait for an autism diagnosis

Imagine your child reaches three years and still doesn't say a word. They don't point to anything, comment or smile. They sit and repeat patterns of play over and over again and get upset if they are disturbed.   You have some suspicions and after chatting with a health visitor you think... may be my child is autistic?

I love my son's laugh

A laugh, a 'spontaneous sound and movement of the face and body that are an instinctive expression of lively amusement'.  Surely a good thing.  If you've got kids, do you remember the gorgeous feeling you had when your baby laughed?  Who remembers a time when they laughed so hard it hurt?  What if laughing out loud hurt you in a much worse way?

When medication costs

No one wants to have to medicate their child. No one wants to medicate their child if they could do something else.  And certainly no one wants to use medication on their child that doesn't work well especially if it's because it's cheap.

How Youtube and Minecraft helped my autistic son with conceptual thinking

Anthony has the type of autism and ADHD that's often not noticed until it's too late.  Anthony speaks, has good eye contact and understands a lot of what's going on around him.  He's on some medication for his ADHD which means that although he moves about and doesn't always pay attention, he's not bouncing off the walls.   But he still struggles in many areas like other kids with the same conditions.

#WonderfulWednesday: Labelling children's behaviour

This week's wonderful Wednesday share starts with a facebook post from Dinky and Me and was inspired by this image from Aspergers Experts. The image shows a statement that fits with a 'don't judge a book by it's cover' type scenario. Don't start by assuming kids are behaving badly.

Favourite Friday: PDA Awareness Day

I'm delighted that the most popular post last week was one shared via Life with ASD and the Rest, and is called 'PDA Awareness Day'.  No prizes for guessing what the post is about!

PDA is a little known and often unrecognised part of the autism spectrum.  It is characterised by the need to resist everyday demands due to an underlying anxiety of not being in control. While we all may feel like we don't want to do things because we feel stressed or anxious, PDA takes this to a whole other level. Children with autism are often thought of as being unimaginative but a child with PDA can be extremely imaginative when it comes to getting out of things as a way of coping with how they feel.  Read the rest here

On Fridays Rainbowsaretoobeautiful publishes the most popular post from the previous week for 'Favourite Friday', just in case you missed it.  See all the Favourite Fridays posts here.

#WonderfulWednesday: PDA Awareness Day

This week's wonderful Wednesday share is from Life with ASD and the Rest, and is called 'PDA Awareness Day'.  No prizes for guessing what the post is about!

That's right, in a few days it will be Pathological Demand Avoidance (PDA) Awareness Day.  PDA is a little known and often unrecognised part of the autism spectrum.  It is characterised by the need to resist everyday demands due to an underlying anxiety of not being in control. While we all may feel like we don't want to do things because we feel stressed or anxious, PDA takes this to a whole other level. Children with autism are often thought of as being unimaginative but a child with PDA can be extremely imaginative when it comes to getting out of things as a way of coping with how they feel. 

When our daughter tells a lie so as not to follow a simple instruction, or even further just says hers legs don't work, I think, could this be PDA?  These of course are relatively minor examples and kids with PDA can have meltdowns just like those on the rest of the spectrum.  One of things we do to help our eldest have less meltdowns is to help him limit the demands on himself. It's often the final straw that can tip him over the edge.

So why is this post my wonderful Wednesday share?  Mostly because I like anything that raises awareness of any type of ASD, and this does just that.  It's also because it raises the importance of a correct diagnosis and this can be vital in getting the right help.

If you haven't read about PDA or this post yet, pop over now and take a quick look. 

If you have a PDA post, please add a link in the comments under the image below for others to see.  

Links
Our blog - Final straw on a pile of worries
Our blog - Without an ASD diagnosis, we could not...

External
Life with ASD and the Rest - PDA Awareness Day 15th May
National Autistic Society - What is PDA?

Add your PDA links directly into the 'website' box so they hyperlink.

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Appreciating the talents of others?

Sometimes it can seem as if a child with autism is stuck in their own world. Our son, David, can cut himself off from those around him and enjoy the time he has on his own. Anthony needs this time too but that doesn't mean he can't see what's going on around him or appreciate it.

We were nearly late getting Anthony to school a few days ago. As we arrived I had him set up for the idea that he would probably be going straight through to assembly. When I collected Anthony at the end of the day, he gladly let me know that I had been wrong and there hadn't been an assembly at school that day.  I suddenly thought that perhaps this had something to do with an Easter Parade, but as Anthony was not forthcoming with information I let the questioning slide.

Today I found out that the school had attended a rolling Easter Service at the Church and this is why there had been no assembly. See, I knew it had something to do with Easter, he does after all attend a church associated school. 

One of the girls from Anthony's class was singing at the service. Anthony's teaching assistant told us he had been very good during the service, he had also commented that his friends singing had been just wonderful. So I asked him about it.

He said that he couldn't talk about it. Her singing was just too beautiful to talk about.

Sometimes the emotions through his senses are just too high. In the same way Anthony doesn't want to look at rainbows because they are too beautiful, he attached such appreciation and delight in the memory of this girls singing. 

Isn't that just lovely. It's as if it took his breath away.

What took your breath away recently?

Links
Our blog - Mysteries of memories
Our blog - showing pride in others in Never prouder of last place 

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The slightest change is difficult

This morning started off like any other. In fact it was going quite well, everyone had was dressed, had breakfast and we're ready to go nearly five minutes early. As we all got into the car to go to school I smiled as the car clock revealed we were ahead of schedule. But it was not to be in any part of the school run.

As we approached the bottom of the road we entered a stream of near stationary traffic. Sometimes there is a bit of a queue up to the round about junction which is about another 100m down the road but today's was unpresidented. It took over 10 minutes to travel 100m. 

Parents who were able to walk to their school strolled passed us at a leisurely pace. Anthony was sat in the front and I began to explain to him that there was a problem with the traffic and we would be late getting to school. We are rarely late but sometimes if we are it's better to drop the children at their respective schools in a different order. Today was going to be one of those days.

Anyhony and his younger sister Jane are able to understand this. David is not.

As we pulled up near Anthony's school, David was deep in the iPad and seems ok as I carried him and walked with Anthony and Jane to the school reception. Anthony was only 3 minutes late so we'd actually done well given the traffic.  However, as we entered reception, David recognised where we were and began to shout and scream. He wanted to get down. We had once had to take David to a meeting at Anthony's school. While he was there he played with a train set. That's what he remembered about here and that's what he was after. 

Anthony was taken through to his class and Jane and I walked back to the car holding a licking and screaming David.  He calmed down once back in the car but when I dropped him at his school he didn't go in as his happy usual self and insisted on hanging around in the playground with one of the assistants. 

It's sometimes easy to forget when things are going ok that these small changes that are so easily absorbed by some of us are a difficulty for others. David has probably now got over his change to his day but it's hard to know just what affect it will have had on his mood and what that might mean for his learning. 

It's impossible to tell when things won't go as you plan and there really is only so much extra time you can allow for things being different. Hopefully as David's understanding approves he will be able to. Impressed when change is happening and that will give him some time to adjust. Exposure seems to be the way forward. After all, Anthony used to really struggle and now he takes it in his stride ... sometimes.  

Links

Our blog - Mysteries of memories, autism and remembering

Our blog - Tearful transition turns out ok

It's time to tell him

There are some things you never expect your children to say.

Anthony is crushing his forehead with his hands.  He's making a haunting noise that's a cross between a scream and a growl. And then he said, "Please, kill me, then make me again with a brain that works properly."

Sometimes I wonder if our son is aware of his difficulties.  Anthony has autism, ADHD and a bit of hypermobility and anxiety thrown in for good measure. He knows some things, like he finds it difficult to sit still and has someone help him at the school.  But this was the first time I've been stopped in my tracks by his awareness.

It was over something as simple as copying a sum from a screen onto a piece of paper.

Anthony was converting a picture sum into a column addition. He was doing the sums very well but after a short time started to struggle. His poor motor skills meant he wasn't always lining the numbers up correctly and he started to forget what he needed to do to work the sum out. "Ohhh mum, my brain and fingers are being very naughty," he said.  A few sums later and he was becoming annoyed and upset by his own inabilities.

"Kill me," he screamed.  "Please, kill me, then make me again with a brain that works properly."

Can you imagine?

I felt my heart thump in my chest, like a booming base drum.  Where was the next beat...?.  The world suddenly seemed in slow motion. I felt my eyes widen and glisten as my stomach shivered. Then I couldn't tell where my failing heart ended and my stomach started.  Oh son.  On the outside I held it together, inside I was a mess.

You see, Anthony's brain works differently as part of his autism.  He processes everything differently.  Sometimes this makes things more challenging and sometimes he sees things in a wonderful way that no one else does. Anthony has also been diagnosed with ADHD.  This is an added complication. Not only does his mind work differently, but then he also loses focus, making some tasks even more challenging.

Anthony knows he can copy sums.  He knows he can work out the answers.  He's learned to overcome difficulties with sensory input and seeing things differently.... and then his mind fails him again with concentration.  Please, give my kid a break, I thought.

Of course I hugged him, helped him focus and worked him through the sum.  I said he had done his sums very well and he could finish. No more homework for him tonight.  I was relieved, to say the least, when he told me he didn't want to die.  That he was just frustrated and being a literal thinker he was pretty sure the only way to get a new brain was to die first, and he didn't want that.  Perhaps I'll talk to him about neurosurgery later...much later.

We've always been in agreement that Anthony should know about his autism, ADHD etc when it seems right.  And we are now on the edge of labelling Anthony's conditions for him. He knows he has hypermobility. When the physiotherapist gave him exercises to do it made sense to tell him.  He says his knees are being silly. Perhaps it's no surprise that he thinks his brain is malfunctioning and being 'naughty'.  He has commented before that his brain is not doing as he asks.

I know we'll highlight all the good things about him.  It's not going to be a brand new thing, we've been drip feeding him the idea for a while. But I'm still extremely nervous.  I feel that thump... thump in my chest again just thinking about it.   Anthony's unexpected outburst means it's time for us to do what we've been expecting.  However he reacts, we'll be there to support him.  But it is time to tell him. It's time he had the opportunity to understand himself.

If you have stories about telling someone you love about a condition they have..please feel free to share your link.  Email me if you don't wish to use the comments box and I'll add your link for you.

Shoes... in the laundry?

David is five years old and attends a specialist autism education unit.  Being five and having ASD means school activities are still based around play and developing the senses.  The other day, I was met by David being carried by his key worker at the gate of the school.

#WonderfulWednesday: The one with the A word

My Wonderful Wednesday share this week is from 'Random Thoughts from a Random Woman' called 'The one with the A word' about receiving an autism diagnosis for her son.

It's a common thing to post about, but I'm sharing it for two reasons.  Firstly, it caught my attention because it's less than a week until BBC's 'The A Word' comes out.  We have known both our boys are autistic since before they were four years old but it won't be long until at least one of them is also aware of the A word too. Secondly, and more importantly, there's nothing like this on my blog.

I started blogging quite a few years after our kids diagnoses. I'd come to terms with their condition and most of my blogging is about overcoming challenges, things that help and heart felt achievements.  This post from 'Random Thoughts from a Random Woman' gives a lovely example of what that first period after an autism diagnosis can be like. Every parent and person feels differently about the diagnosis.  Some parents and people may have fought for a diagnosis, waiting months in some cases.  Others are scared of it. Either way, being nervous about it all is completely normal.

We have found having a diagnosis for our kids is very beneficial.  We've been better able to access services for example.  Our boys aren't any different because of the diagnosis.  Indeed, most of all it has helped us understand them and soon it may help them understand themselves.

Links
Our blog - Without an ASD diagnosis we would not...
Our blog - What is there had been an autism screening? Would I still have had my kids?
Our blog - How autism is like the new courtesy car

Dry Sensory Easter Rabbit Craft Activity

Some kids with autism can be sensitive to wet textures or not like mixing dry and wet textures together but still enjoy being creative.  We had great fun with this craft activity at a local group, Me Too & Co, which supports children with additional needs and their siblings.

Dry Sensory Easter Rabbit

Apart from cutting out rabbit shapes from coloured paper this activity is easy to set up.  Choose some different dry textures in bowls, add glue sticks and pens and let your kids have fun.  At Me Too & Co they had:

• Different coloured felt shapes including ovals, rectangles, squares and triangles
• Cotton wool pleats
• Little pom pom balls
• Feathers and
• Tissue string.

Encouraging fine motor stills

If your child has emerging fine motor skills then this is a great activity. Kids will need to use and develop their pincer grip in order to pick up bits of felt and the little pom poms.  If this is challenging, don't worry they can have an easier time with the feathers and tissue string.  

Pulling the cotton wool pleats apart will encourage bilateral motor skills (using both hands together to achieve an outcome).  By placing the bowls of bits around the child you will also encourage them to cross their mid-line when they reach over to grab items.

Using a glue stick may encourage a classic pencil grip but even if not it will still encourage pre-writing movements while you cover the rabbit with sticky glue.

Encouraging Labelling

Different shapes of felt and the different colours of items give you and opportunity to label shapes and colours.  It's also a good opportunity to label textures such as soft cotton wool, crinkly tissue paper or fluffy feathers.

You can also label using makaton, have a look at the Makaton #wetalkmakaton sign of week for helpful ideas.

Jane had a great time at Me Too & Co and I loved her finished rabbit. 

Links

Our blog - Sensory healthy flapjack recipe

Our blog - Gale winds and low sun: Is this what it is like for my autistic sons?

Getting into the television

Jane and I were walking through a nearby park.  The sun was shining and if you stepped off the shady path into the sun you could almost forget the chilly breeze.  A gentleman with a dog, a big coat and hat walked past us.  Jane was busy commenting on some crocuses that were coming up through the grass.  As she looked back she saw the gentleman and said to me, "Look, I can see Sven."

Of course, she was talking about Sven from Disney's Frozen. By the time I'd figured out what she was saying, the gentleman was a bit far away to say hello, so we talked for a moment how we might see him again another day.  I also made a mental note to talk again to Jane, who is nearly three years old, about not talking to strangers without mummy or daddy.

Then, Jane announced that she had an idea. She'd figured out how we could see 'Sven' again. "You need to get some scissors and cut a hole in the television." Ahhh.. yes, that way we can get into Frozen.

Jane and I laughed loudly for a few minutes while I talked about how we can't cut a hole in the television.

Wouldn't that be silly, clever idea, but a bit silly.

Kids are going to lose themselves in virtual reality when it comes out. However, the event also reminded me of the literal thinking her brother showed in a similar circumstance.

Anthony is an eight year old boy with autism.  Like many autistic children he uses television and books to help him with his imagination.  He was reading a book from school about a magical adventure. Often if Anthony is reading a book that sparks interest we will try and find a way to allow him to experience this.  For example, in one story the children were transported back in time to the Blitz.  We took Anthony to the Imperial War museum to see what life was like during the war.

However, this magical adventure was a bit too far for us to 'visit'.  Anthony had mentioned the trip to the museum to his teachers and they had suggested he imagine being in the new magical story.  So at bedtime whilst reading his book, Anthony asked me, "But mum, how do I get into the story." 

I looked closely at him and realised he wasn't just looking closely at his book, he was physically pushing his cheek into the page.  Next he got out of bed and put it onto the floor to jump into the pages 'Mary Poppins into a chalk pavement picture' style. Like many autistic people, he has had difficulty with communication and realising the real value or meaning of some phrases and questions.

It was adorable of course.  Then we talked about the real meaning of 'getting into the story' and he is now pretty good at using his imagination this way.

As for Jane, well, we are hoping to visit one of the Disney theme parks at Easter.  This will surely blow her mind.

Links
Our blog - Beautiful Belle has a point about books
Our blog - Rocky reality: Autism and imagination

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Autistic Anthony's always to blame, problems on the school run

A quarter of people with autism are non-verbal. They don't talk at all and may use other methods of communication. Our eldest son Anthony can talk well. He attends a regular mainstream school.  But that doesn't mean he's always understood. His honesty and difficulty communicating often means that without someone there who understands him, he is blamed for what's gone wrong.

Such an event happened on our way to school last week. Our school run, like many family's, is a busy one. David goes to a specialist ASD unit but we are lucky that this is located half a mile on the otherside of Anthony's school. This means we drive to David's school and park then Jane goes in buggy and Anthony goes on his scooter while we run this get to Anthony's school on time.  Yes, every single school day we are seen running across a cemetery. The traffic is so bad that it is more consistent to cut through the cemetery, with many other parents, than it is to try and drive and find somewhere else to park. Without the scooter for Anthony, we would be late everyday.

But with the scooter comes an extra hazard. We have practice stopping at roads and missing objects a lot. 

"Stop at the road"

"Look out for the gentleman" 

"Say excuse me"

"Careful by the buggy" 

These things get hollered a lot. 

Anthony has slipped on ice once this year, but on Friday it appeared he'd scootered straight into a little girl walking to his school.  It happened soo fast. My view was blocked for a second as we past a tree and then suddenly the little was on the floor and Anthony was stood their apologising. "I'm sorry," he said. "I couldn't get past. I hit her."

The girl was probably about five or six.  She was very upset, there was a lot of tears.  The girl's mother was giving her lots of hugs and said that these things happen. She even said for us to go so as there was no need for us both to be late for school. I think mostly the girl was just a bit surprised, but it looked like she'd hurt her hand and bumped her knee as she had fallen. I couldn't help feel guilty. I should have been closer, I should have shouted more warnings to Anthony. 

Then by the time I'd dropped Anthony to his class and talked to him and Jane, who was still in buggy, about being careful, I felt guilty in a different way.

I saw some great quotes on Twitter from The National Autistic Society and the AutismCon on Saturday.   According to a speaker, 99% of public say they have some understanding of autism but 84% of autistic people feel they are not understood. 

By the time Anthony had got to school I had determined by some answers from him (but mostly by conversing with Jane who is nearly three in comparison), that the little girl had infact stepped in front of Anthony and thrown her hand out to the side to point at something. Anthony had been passing but still hit her hand.

Despite the mum having said that these things happen I still felt like I should have defended him in some way. I felt guilty for almost assuming he was to blame.  I wanted to bump into the lady on the way back to our car, though what would I have said? "Excuse me, actually it wasn't only my son's fault that your daughter got hurt?"  Of course not, because I think the same, these things happen.

Anyone when they are in a stressful environment or hurt can have difficulties communicating. People whose first language is not English but can converse in it perfectly well can have difficulty and revert to their native tongue when stressed or in pain.  It's the same for lots of kids. My son will revert back to basic communication. "I hit her." He absolutely did hit her hand. "I couldn't get past." Well, no, neither would I if a hand was suddenly thrust into my path. "I'm sorry." Of course, no one wants anyone else to be hurt. 

I guess mostly I'm just aware that one day, these difficulties might have more serious repercussions. He's not going to grow of autism. What if he was asked to make an instant police report or appear in court? What if he was involved in a car accident? And this brings up the other point I saw from AutismCon. John Wilson said, "How do you communicate you are different if you have challenges with communication?"

This is undoubtedly something my boys and countless other autistic people face. And we will have to figure out how to help them with this.  He can learn. In the meantime, I can be proud that Anthony was very truthful about his actions, he didn't try and hide from what had happened. I can be proud that he was concerned for the little girl that was hurt. I can be pleased that his sister was there to help clarify what has happened. And I can try harder to keep up with him, so I'm right there if something happens. 

How do your kids handle confrontation or stressful situations? 

Links

Our blog - Our terribly truthful child

Our blog - Anthony's first experience of guilt

Our blog - Autism and the misunderstandings of empathy

External links

National Autistic Society (NAS) - Conferences

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#WonderfulWednesday: Different stories

This week's #WonderfulWednesday share is a quote from Stuart Duncan (founder of www.autcraft.com) that I saw via Stories About Autism.

This small quote encapsulates so much. My boys are both on the autistic spectrum but they differ in so many ways. Anthony could never cloud watch like David because Anthony is afraid of rainbows. David won't get nervous about going back to school like Anthony, because David loves school! As I commented on Neurotribes, it does seem that sometimes we should talk about 'autisms'

I also love that it says 'stories'. I love stories, happy ones are my favourites and maybe that's why I read this as an almost joyful quote, though that won't be the same for everyone. My boys stories often make me smile. I grinned at David's interaction in the playground and could barely hold back tears of joy when Anthony participated in a swimming gala. It's infact usually my own fears that cause me occasional sadness and that's usually about stories that haven't been made yet. 

 Each child's story is different and the same goes for those on the autistic spectrum.