Friday, 27 May 2016

Favourite Friday: The joy of his acceptance

You never know what's going to bring that massive grin to your face.  You know the one I mean, the one you can't stop even when you try, where you think if you don't stop your cheeks might squash your eyes closed.   The best one's are those that catch you unawares.  That's exactly what happened to me this morning.

Like most families that have autism in them, the morning routine is fairly fixed.  The routine gives the kids the stability they need to start the day and helps us get out of the house.  Today though there was a slight adjustment to the routine.  It was the first day that Anthony would be taking his ADHD meds. 

Thursday, 26 May 2016

The Snare (STAR WARS) by Cavan Scott: A review


The Snare by Cavan Scott, is the first in a series called Adventures in Wild Space a Star Wars spin off aimed at children 5-8 years old. We were sent a copy by Mumsnet to review. As with all my reviews, this is impartial and from the perspective of a mum with autistic and neuro-typical kids

STAR WARS Adventures in Wild Space: The Snare is the story of Milo and Lina Graf who are on the run from Imperial Captain Korda, the man responsible for the imprisonment of their parents.  The children head towards a planet looking for help in finding their parents and are tracked down by the villain.  Star Wars fans will enjoy the story that is full of classic items; droids, strange looking aliens, planets, storm troopers, tie fighters and even ...Darth Vader.

Wednesday, 25 May 2016

#WonderfulWednesday: The challenges of positive relationships for parents and carers


This week's wonderful Wednesday share is from Being Toby's Mummy and is called 'The challenges of positive relationships for parents and carers' supporting Mental Health Awareness Week last week.

It's a lovely post that gives some great ideas on how to have with external relationships when you have extra stresses like having a child with additional needs. Being Toby's Mummy picks up on some lovely points.

Tuesday, 24 May 2016

Speech sounds developing with Toy Story

David has for a while now been using Makaton sign language with some speech sounds to communicate. We've been concerned that as well as autism, David may have some other speech difficulties because he has never really said more than one sound for a word. He'll say 'p' for 'up' or 'da' for down. He can ask for a yogurt 'gu' or an apple 'pul'. But this has rarely extended beyond this one syllable or easy syllable shapes.

Syllable shapes refer to the way that we put consonants and vowels together to make words. Without wanting to be too much like Countdown, speech therapists think of syllable shapes as putting consonants (sounds) and vowels (sounds)  together. So David's 'da' would be CV (One consonant + one vowel).  A CVC word would be his version of apple 'pul'. The more complicated the more advanced the shapes.
  • Easiest Syllable Shapes VV like 'uh oh', CV like 'he', VC like 'odd', CVC and CVCV with the same consonants like 'dad' and 'mummy'
  • Harder Syllable Shapes CVC and CVCV with different consonants as in 'dog' or 'belly' , and CVCVCV words like 'banana'
  • Hardest Syllable Shapes Words with two or three consonants in a row like 'basket' or 'doctor' and longer words like 'pronunciation' (which even I have to think about saying)
David has today jumped into the 'Harder' syllable category.  We've been trying to help him with this and today he requested Toy Story by asking for 'Woo-dy' and signing the letter 'w'. That's CVCV with different consonants.

Jane, Davids younger sister is only three years old and already says banana. But this doesn't take away from his achievement. Whilst Jane reminds us of how far he is behind and has to go, we're still very pleased with his progress. This only gives another set of targets to help him expand more into the 'Harder' category.

Can you spot which categories your kiddie have conquered?

Links
Our blog - So happy my son has echolalia
Our blog - Why all forms of communication are awesome


Autistic child's Woody doll

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The Reading Residence “Our

Monday, 23 May 2016

Sensory Banana Bread recipe


Anthony did this delicious banana bread recipe at Kiddy Cook a few weeks ago.  This is a great recipe if your kids are a bit fussy about getting their fingers messy, whilst introducing them to the idea of being near wet textures.

Many kids with SPD or autism can find different textures uncomfortable. This can be a simple 'wet bowl' recipe where all the ingredients get stirred together and then go into a tin to bake in the ovens there is no need to get wet hands.

Kids can either practice their cutting skills with the parchment and you can help with the greasing or we can find it easier to use a pastry brush with a bit of oil to 'paint' the inside of the tin instead. Stirring is also a great way of using bilateral motor skills (using both hands together) as you need to hold the bowl with one hand and stir with the other.

Anthony loved making the banana bread.  We cut the finished bread into fingers once it was cooked and that made it easy for the kids to eat too.



Friday, 20 May 2016

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.



Thursday, 19 May 2016

My joy of his acceptance


You never know what's going to bring that massive grin to your face.  You know the one I mean, the one you can't stop even when you try, where you think if you don't stop your cheeks might squash your eyes closed.   The best one's are those that catch you unawares.  That's exactly what happened to me this morning.

Wednesday, 18 May 2016

#WonderfulWednesday: Parenting an older child with autism.

This week's wonderful wednesday share is from Debbie Roberts and is called 'Parenting an older child with autism'.  It's about exactly that and an example of the difficulties that come with it.

So why is this my wonderful wednesday share?

I read a lot of stories about children with autism.  Possibly because I myself have younger children on the spectrum I have found many posts about parenting children of a similar age.  I've also read many posts about individuals who were disgnosed as adults.  This post that highlights some of the experiences within the teenage year age group.  I have worried about the future before and we touched on that a bit when I shared 'Will he live on his own?' a little while ago.  The difficulties don't necessarily disappear as children grow up.  Sharing this truth is important and this post does it in a wonderful way.

Like our son, Debbie's son has a great memory, which is good as Debbie says hers is terrible.  This honest post gives me a glimpse into just a few things this mum has had to think about with her son. If you haven't read it yet, go over and have a look.

Links
Our blog - Dear Health Minister: I don't want to lose my son
Our blog - Autism and the mysteries of memories

External
Debs Random Writings - Homepage


Tuesday, 17 May 2016

Autism parenting: Jumpers on or off with SPD

Ever look outside to see what the weather's like before getting dressed in the morning?  I still do but generally these days clothes are laid out the night before and are based on the weather app on my phone. The only thing that matters with David is if it's going to be hot then we lay out his school shorts.  But Anthony needs a bit more attention. This might sound as if Anthony is the more complicated, but both boys have autism and both have things to think about even with something as simple as choosing what to wear for school.

Anthony is quite temperature and touch sensitive.  As far as the springtime weather and clothing goes, this means he can feel when he's getting hot really quickly and wants to be able to cool down by taking off his jumper.  On the other hand, if it's raining, he wants to be able to wear long trousers so his legs don't get wet.  Spring time is a constant reviewing of our weather app of see which version of shorts, trousers, long or short sleeve shirts, Anthony will be wearing to school.

David on the other hand is the opposite with temperature.  He'll hardly notice if you put him in a really hot bath and doesn't blink if he's been holding ice in his hands for a while. Of course, the interesting thing here is that David is still actually getting hot or cold but he's just not bothered about it or perhaps doesn't register it in the same way.  So whereas we have to prepare Anthony for every eventuality of the weather,  David is more interested in wearing things as they are meant,  It's part of his routine that he wears a full school uniform and like many individuals with autism, routines can make him feel comfortable. In the recent warm weather this has meant that David has been sweating lots at school. 

On the day the weather first turned warm, David was in school in regular trousers, his school polo shirt and sweater.  As the day got hot David refused to take off his jumper despite several attempts by staff to remove it.  He ended up pretty sweaty.  We are now sending him into school in his school shorts.

 So how can we help the kids further?

Well, we can help Anthony make decisions on what he is going to wear based on what we think is going to happen and then help him if he becomes anxious about what he is wearing.   We have used a 'problem chart before to help him with this.  We can help him by pointing things out like, if it rains you won't get wet if you are inside for example.

For David, we're going to have to try and help him understand he can wear his school uniform without his jumper.  Initially I think this will be a trial of taking his jumper off sometime after he has come home.  As David can generalise tasks he may be able to allow to happen at school in the future too.

Jumpers on or off, shorts or trousers?  Who knew getting dressed for school would be so complicated for our little guys?  Our daughter is now beginning to rquet items to wear and that's a whole new thing for me.  How do your lot get on with choosing clothes?

Links
Our blog - Wellies make me think SPD
Our blog - Helping kids decide what to wear with a spoon doll craft

Autism and getting dressed

Monday, 16 May 2016

Spring Tree kiddie craft activity using motor skills

Spring Tree

This is a lovely activity that develops motor skills and promotes understanding on what's happening in nature at this time of year.

Friday, 13 May 2016

Favourite Friday: I don't want another additional needs child

Are you horrified?  I would have been.

"Do you think we should have another?"

"I don't know."

"If we had another like Jane, then maybe.  But what if they were like Anthony... or David...or had greater difficulties?"

"I just don't know if we would could cope?"

"Me neither."

And here is no way to know if our next child could have difficulties until they did.  There is currently some agreement that autism is likely genetic but there is no medical type blood test or otherwise to see if your child has autism.  Autism is a diagnosis decided by a panel who look sat your child's difficulties and discuss whether these represent a triad of impairments that warrant an autism diagnosis.  There is no Non-Invasive Prenatal Testing (NIPT) for autism, although there may be one day.  Even if there was, whatever your view, I don't think I personally could choose between a baby with difficulties and a baby without.  This means, if we don't think we could cope with another child with autism or any other disabilities then the safest option is to not have anymore kids.

Read the rest

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

Thursday, 12 May 2016

Who is spinning at the playground?

We can never really know how David is going to act when we go somewhere we've either never been before or not been to for a long time. Like many with autism David likes to know what he's doing when we go somewhere. It doesn't need to be complicated, we are here for 'lunch' or 'play' and to be honest that covers a lot of things. He often uses Makaton and some sounds to repeat and let us know he's got the message.

Today we had 45 minutes with nothing to do while Anthony was at his cooking club. After is driven past the two closest playgrounds to the school which were both dismissed due to be heaving, I went to one that was next to a pay and display car park. Sometimes these playgrounds are a bit quieter and this was the case today, even though it was still a gloriously sunny afternoon.

I think it's been nearly a year since I've taken Jane and David to this playground so like many adventures with our kids I didn't know what David might do or how he might react. The destination had be labelled for 'play'. He walked in, iPad in hand. I pointed towards a spinner, his favourite playground apparatus and he was soon spinning around.  This really appeals to his sensory seeking but after a little while he went off for a wander.

Jane and I followed him around as he tried out most of the equipment. He particularly seemed to enjoy a spinner at an angle and some bouncy bugs. He'd been on one of these for a few seconds when another child stood nicely waiting in a queue type style and I asked her if she would like a turn.

The little girl noddy politely as I looked at David and wondered if this might cause upset.

"Little girl's turn, then David's turn," I said and gently prised my son of the spinner.

"David wait, then David's turn."

I looked at him nervously thinking that the next second would be one second too long but that second never came. The girl finished and David had another go that lasted a good while, but with no one else lining up he could take as long as he liked.

After a while he finished on this and the rest of the playground and headed over to the buggy. This is David's way of telling us he has finished playing.

"Finished?" I asked.

"Shed," David said... And signed.

We piled back into the car and headed back to school to pick up Anthony. Good, not a disaster at the playground. Even better I was wonderfully pleased with David. There are more and more of these things going well and that's such a relief. Best get home before it falls apart I thought!

Links
Our blog - Potato handler and crumble creator
Our blog - A ray of sunshine - autism at the playground

Autism in the playground

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Diary of an imperfect mum

Monkey and Mouse

Wednesday, 11 May 2016

#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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Tuesday, 10 May 2016

My autistic son is loving his lists

Lists.  We all use them at some point.  They help us organise our thoughts or remind us about tasks.
  • Shopping lists
  • To-do lists
  • Snag lists
  • To catalogue
  • To register
  • To file
  • To record
Recently our eldest son, Anthony, has become quite interested in a few lists.  Anthony is on the autism spectrum and like some people who are autistic, he has a few special interests.  He is particularly keen on Formula 1.  Previously he has watched all the highlights of all the races for the last few seasons, several times over but recently he has been more interested in reading or memorising a list of races or results.

Anthony used both of these activities as a self stimulating routine and a way of calming his system.  He often 'scripts' from the highlights DVDs.  If I had a penny for every time I've heard, "And it's lights out and away they go.."

Sometimes scripting is seen as a type of echolalia, where a child is repeating a set of words or sound without understanding or knowing what they mean.  However, this isn't the case with Anthony.  He fully understands the concept and knows what's happening.  Repeating the scenes and details in his head is calming.  Perhaps it's a bit like picturing a relaxing beach scene if you are stressed.  Anthony, and many other individuals with autism, have difficulty using their imagination and picturing things in their mind.  Sometimes I think repeating a list, like the order of the Grand Prix destinations this year, gives him that same peace.

It's also helped with developing his skills and working through things he wants to understand.  Recently he memorised how to make a pizza, because it was an ordered list.  When our darling dog passed away, he made a list of all the ways he could talk about it - it was like that scene from Patch Adams. 

There are some thoughts that scripting should be discouraged.  If it's distracting Anthony from himself or what he wants to do then we can draw him back.  In the meantime his lovely lists serve a valuable purpose and I won't be cutting them short without good reason.

Links
Our blog - Using our memory skills making Pink Pizza
Our blog - A little bit of obsession in action
Our blog - I'm happy my son is showing signs of echolalia




Friday, 6 May 2016

Favourite Friday: I hate playgroup

I hate playgroup. It's not always been the case, but three kids in and I'm now happy to admit it. Because the thing is.. the playgroup is only as good as the people who go there.

So, what am I saying... I don't like the people at the playgroup at the moment?  Maybe? However,  I have identified that I feel like this almost exclusively at this time of year.

We live in a busy area, there are a lot of playgroups but whether they are great or not they always fill up really quickly.  This means that you get different people at the playgroups every week.  Sometimes your friends will get in and sometimes there will be people you don't know... and sometimes people you'd rather not go to a play group with.  The people who sit or stand talking, ignoring their kid
Read more here

On Favourite Friday's we publish the most popular post from last week, just incase you missed it. See all our favourite posts here

Thursday, 5 May 2016

Kiddy Cooks: Using our memory skills with Pink Pizza recipe

I'm often impressed by Anthony's memory. Having a good memory is not uncommon in some people with autism and is a characteristic that both my autistic kids share.

I've used baking and cooking as an excuse for the kids to practice their motor skills before.  This lovely one from Kiddy Cooks for example requires grating and that needs bilateral motor skills (using both hands in a coordinated way by holding the grater in one and moving the cheese and courgette with the other.

But it's also a great way of practising memory recall too. Anthony was able to completed recite and make another lovely pink pizza for several days. Great for his memory and for his tastes as pizza is one of his favourite foods. This lovely recipe adds vegetables into the pizza which is great and uses beetroot to give the dough a pink colour.  Why not give it a try? Search 'cooking' to find other recipes on this site.




Wednesday, 4 May 2016

#WonderfulWednesday: Walking into a room full of people is like trying to look at the sun

This week's wonderful Wednesday share is from a Too Much Information post on The Guardian.  It's an article written by eight year old Beatrix Finch who has Asperger's Syndrome where she describes what's it's like being her everyday.

I love anything that gives me an insight into what it might be like to be on the autistic spectrum. I wonder if a breeze feels like a gale or if the sun is like a blinding light when I'm out for a walk. 

I wonder if the feeling of being in a swimming pool is like me turning up with the aftermath of  a migraine.

I'm amazed when our son overcomes his fear of sudden noises to be amazed by a fireworks display.

What I think is wonderful about this article is that although Beatrix describes of her some curious reactions to the world around her she's not sorry for this. At eight year's old, this girl has a good understanding of how things make her feel and attempts to interpret this for the neurotypical amongst us.

If  you haven't read it already, please go over and have a look.

Our Links
Our blog - Gale winds a low sun - is this what it is like for my autistic sons
Our blog - Swimming Gala - Never prouder of last place
Our blog - Turning fears into fancies at the fireworks

External
NAS - Too Much Information
Guardian - 'Walking into a room full of people is like trying to look at the sun'

Wonderful Wednesday autism story

Tuesday, 3 May 2016

I don't want another additional needs child

father

I don't want another additional needs child. Are you horrified?  I would have been.

"Do you think we should have another?"

"I don't know."

"If we had another like Jane, then maybe.  But what if they were like Anthony... or David...or had greater difficulties?"

"I just don't know if we would could cope?"

"Me neither."

And here is no way to know if our next child could have difficulties until they did.  There is currently some agreement that autism is likely genetic but there is no medical type blood test or otherwise to see if your child has autism.  Autism is a diagnosis decided by a panel who look sat your child's difficulties and discuss whether these represent a triad of impairments that warrant an autism diagnosis.  There is no Non-Invasive Prenatal Testing (NIPT) for autism, although there may be one day.  Even if there was, whatever your view, I don't think I personally could choose between a baby with difficulties and a baby without.  This means, if we don't think we could cope with another child with autism or any other disabilities then the safest option is to not have anymore kids.

So that was it.   No more kids.  And despite my husband and I having a complete understanding of each other here (notice I've not even said who said what above) and being in agreement, I've felt a bit disappointed with this decision since.  I've always advocated that some of our children are 'different not less', but this whole situation felt like it was counteractive to my long standing belief. 

When Anthony was diagnosed with autism, there was very little said by the professionals on what to do next.   By the time David was diagnosed, we'd had a much better understanding of Anthony's autism and it's been fascinating to see how the condition differs in our beautiful boys.  Jane loves both her brothers and as they've growth we've also added ADHD and hypermobility to the list of things to think about on a daily basis.   It is true, there is a lack of autism awareness and no one will understand our autistic children like we do.  In many ways this means they miss out. As a family we are not put off by these challenges.  The boys have a variety of conditions but Anthony was still followed by David and then by Jane.  So if their difficulties didn't stop us then.. what's changed?

Having children or not, how many and when is all very personal.  Some people have large families, some wish for families and have difficulty having them.. some people have no desire for kids and end up with them anyway.  There is no right or wrong way, only what's right for you.  What could cause confusion or regret is the pressure to do something, society says or fear brought about by a lack of information.  But the only pressure my partner and I have is that which we put on ourselves.  We want to be good parents, and sometimes that means drawing a line with what we can cope with or what we think is best for our family.

Like many parents, bringing up our children may be the greatest achievement of my life. Yes, some of it has been difficult, but it's also been filled with immense joy.  The day Anthony was in a swimming gala, the day David first signed for a hug, the day of Jane's first Christmas show.  But all of them and the rest of our experiences make our family the fantastic entity it is.   I was feeling sad with our decision because I wouldn't be able to accompany another child through their life and experience these things again.  Worse, I felt it was my fault for concluding that we wouldn't cope.. and that's what had changed.

I've had experience of raising kids with autism, and ADHD and Hypermobility for that matter.  I know some days are difficult but I also know some days are filled with the kind of joy that makes you think your heart is going to burst.  Recently Autism has been highlighted through mainstream via media such as the BBC series, The A Word and last week there was a parliamentary debate in the House of Commons on Autism awareness.  It highlighted a general lack of understanding autism, not only from the everyday population, but health professionals and those in education. 

Like it or not therefore, having autism in the family can be a challenge.  My three kids could already be going to three different schools to meet their individual needs.  We have difficulty going out to some places because it's a two adults to three kids ratio and all the kids needs watching. Nevermind whether we can talk the dog with us or not.    I spent three hours on the phone the other day trying to find out why no-one was prepared to refer our son for the tests that everyone agreed he needed. Sometimes as a couple we feel we are spread to thin.

It was in the collapse on the sofa last night from what turned out to be a day of dramas that I turned things around in my head. 

My husband announced, "Chelsea have scored!"

"Great.." I said (nonchalantly rolling eyes)

I've little understanding for the following of football when you have no 'team' like my other half.  What difference does Chelsea scoring make to my life.... absolutely nothing.  Or so I thought.

Turns out that Chelsea scoring meant there was a lot of very happy people in Leicester.  A team that was nearly relegated last season has beaten the odds to come top of the league.  'History is being made' said the TV.  Apparently Leicester are the first new champions of the something cup in 38 years.  When I said they'd beaten the odds, I've been led to believe that you could have got 5000:1 on the chance that Leicester would have won the cup at the beginning of the season.  'Anything's possible...things can change," said the TV.

That's right I thought. Things can change.  Just because we sometimes feel spread a bit thin now doesn't mean we always will.  David may end up talking, Anthony may get his anxiety under control, Jane may ...well anything and you never know the dog may stop trying to escape the garden.

Just because we don't feel we can cope with another child now doesn't mean that I'm failing.  The time might come when we do... or maybe not. We may even adopt one of the many kids waiting for adoption who have additional needs.  After all we've got some experience there. Let's not get ahead of ourselves here though.  The point is that suddenly our decision felt better.  The future is not set.

Life changes and you can only go with what you've got at the moment.  It doesn't mean it will stay that way or that it will change how you expect.  My husband and I were not tongue tied at the idea of being tube-tied, neither of us were up for it. I may not be ready to draw the line under 'no more kids ever' right now, and I may or may not be in the future. Perhaps I just need to spend a bit more time here and hope the future will take care of itself.  After all... I've got that phone call to make, that medication to order, the dog to walk and the .........

Links
Our blog - Why I hope I would still have my kids
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