Tips to help prepare for a camping trip with autistic kids

We've been camping a few times now and we've also tried going away in a motorhome. Camping can be great fun but like everything with autistic kids it always works best with a bit of preparation. 

The day I hid I had kids with disabilities

It can be difficult to treat yourself when your kids have disabilities.  It's simply difficult to leave our kids with anyone so getting time to go to a spa for a treatment is fairly rare.  Sometimes the hubby and I get time out by ourselves, and on a special occasion,  I may even spend that time with just me.   And that's just what happened when I recently spent my spa voucher I got as a gift.

Our fireworks DOs and DON'Ts for our autistic kids

Loud noises, bright contrasts, sudden changes of direction and usually lots and lots of people. While being in an unfamiliar place, open to the elements and in the dark. None of this bodes well for our family with autism as we approach fireworks night. Here are our do and don't ideas for coping with anyone who might find them difficult to access as they are scary or overwhelming.

Autism Parenting: Probably the best 'view' in the world

Can you think of the best 'view' in the world?  I bet it's not the same as mine.

I've been fortunate enough to see beautiful sunsets over electric blue seas and sparkling snow covered mountains but I've never had a view as precious as the one I had one evening last week. 

Why my autistic son would be a great father

Anthony, our eldest son with autism, used to say that when he grew up, he'd like to be a..  dad.   Possibly also combined with a part time job as a either a dentist or super villain.

5 ways to get sleep when you are kept awake

I've spoken to so many new parents, parents of children with additional needs and carers, whose primary issue of the day is that they are exhausted. Every mother reads about 'baby brain' as the baby keeps you up at night but no two kids are the same. Some babies sleep through from a few weeks, others a few months and despite efforts some kids need help for years through their life.

Helium balloon learning and motor skills activity

For our eldest son's recent eighth birthday he declared that he wanted "those balloons that stay up." Instead of just opting for a giant foil figure eight I looked around and found an easy way we could have some educational fun with helium balloons at home.  Many kids with autism can benefit from developing their motor skills, listening skills and team work, so our helium balloon games focused on these.

We played musical balloons, pass the balloons and find the balloons.

Sporting plastic red belt accessories for half term?

It's not just the kids that people look at oddly because they have autism.  Never mind their peculiar behaviour, screaming collapses, strange way of talking or just complete lack of speech, I'm 'odd' even when I'm on my own thanks to my latest clothing trend. Red is definitely not my usual colour, but it has been this week.

Both our boys are very sensory seeking.  Just like Jane, their younger sister, most kids love hugs, tickles and cuddles on the sofa.    The boys are a bit different. 

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.

The slippery slope of medicating my kids

My boys are not in any physical pain. They are not bleeding, their organs aren't failing, they have no broken bones. They very rarely get colds or flu. But this afternoon, I'm visiting another medical professional seeking more drugs for one of my sons.

I'm so happy my son has echolalia

Nearly 75% of verbal autistic people display some kind of echolalia. It is 'echoing' or repeating or words, sounds, sounds made by someone else. It's there because the child doesn't understand what's being said but thinks a response is appropriate.  It was one of the key 'symptoms' that led to our eldest son's Autistic Spectrum Disorder (ASD) diagnosis, so why on earth am I pleased our second son is now showing signs of echolalia?

Favourite Friday: David's iPad, an alternative to parenting?

I think if I told some people how long my son can play or should I say, is allowed to play, on his iPad I'd get strange looks. I know if I told people he spent hours everyday on it I'd be judged.

Some kids and adults with autism use their iPads to communicate. There are great programmes like Proloco2go that means an iPad becomes a tool to interact. But that's not what David does. He communicates mostly with Makaton sign language. In fact, one of the first signs David learned was the sign for iPad. So obviously I'm using it as an alternative to real parenting right? Here's why not..

On 'Favourite Fridays', Rainbowsaretoobeautiful will publish the most popular post from the previous week. If you missed it, then here's your chance to catch up.

Funday parenting for our autistic son

Finding things to do with autistic children can sometimes be difficult. When our second son was diagnosed with autism we already knew taking him places was difficult. However, David has come along way and I've written before about the fun we've had on the inset days when his brother has been at school. Now it was Anthony's turn. He is a little older and he and we have learned lots of strategies that enable him to do more things. This morning both his younger sister and brother were in school and nursery and as we got in the car to spend the day with him, Anthony declared "Today is my Funday."

Just because both our boys have autism it doesn't mean that they don't like doing things. Inset days are great because places aren't as busy at the weekend and this takes away one of the key issues we have with all the kids. It takes away the worries about communication, the worries about sharing and the worries about being over stimulated by other kids.

We tackled the playgym with great success with David's last inset day when Anthony was at school.  So what did we do and how did we manage on Anthony's self declared Funday?

1. Taking our autistic son to an arcade

The arcade is an attack on your senses. Sounds can be overwhelming for a child with autism but it's important to remember that kids can be sensory seekers too and can really enjoy this stimulation. This means they can crave sensory input. But even with this and hardly anyone there, Anthony can quickly go from a seeker to suddenly having an overload. So how do we help him? One of our best tips, put him in charge of what he wants to do. We suggest activities that match his mood but he is in control and this gets rid of expectation and anxiety. Next, don't be worried about how long or how little time we spend there. When he is done, we are done, and he's managed to enjoy himself,

2. Going out for lunch

This is a rarity in our household. With David often on the iPad and Anthony's ADHD kicking in at the worst times, sitting for a meal isn't too often on our 'fun' agenda.  However, Anthony's favourite food is pizza. So if it's just us in a near empty restaurant with a pizza and no worries about him shouting out, wriggling or how long it takes to eat, then it can be a successful activity.  We just need to prepare him with our usual discussion about being able to have food like pizza at lunchtime and it being ok not to have sandwiches, but this does and did go down fine today.

3. Lastly the Cinema

An empty cinema can seem like a great place for someone with autism. Without many people there is the freedom to move around and talk and ask questions if you are having difficulty with the story. True there aren't bright lights but sound can be very loud in the cinema so it's worth not sitting too close to the front, especially if like Anthony you've already had a sensory activity for the day. Anthony's getting better at following the plot abit more, and going on an inset day makes the whole experiment much easier.

And that made up Anthony's 'Funday'. Might not sound like much but I can assure you this is not only a fairly rare experience for us, but by the end of the day Anthony was pretty much exhausted.  Thank goodness there's a while before he has another inset day without his siblings again!

Links

Our blog - Inset with David

Our blog - David's iPad - an alternative to parenting?

Our blog - Watching our son stand for his Christmas concert (ADHD) 

As listed on:

David's iPad, an alternative to parenting?

I think if I told some people how long my son can play or should I say, is allowed to play, on his iPad I'd get strange looks. I know if I told people he spent hours everyday on it I'd be judged. This post has been updated, please read the rest here.

Mess-Free writing fun with Doodle Dome

Finding ways to get kids involved in writing can be a bit tricky.  At this time of year when it's still dark early, the kids are even less likely to be focused and more likely to bounce around the house at the weekends.  David got sent a Glow Crazy Doodle Dome for his birthday. I'd never seen one of these before, but I've found it ideal as it's basically a pop-up dark tent that kids go into and write on the walls.

Beautiful Belle has a point about books for autistic kids

It's not uncommon for Disney characters to appear to have the odd autistic trait. The little mermaid was obsessed with the human world and Rex from Toy Story doesn't like change for example. But maybe the most common similarity is characters who aren't understood by others, like Belle.

It's moony tonight

Our Anthony often says or sees things others either don't notice, or don't think about like he does.  He makes great observations on the way home.  His latest one made me smile. He looked up at the evening sky and declared "The moon is very bright, yes, it's very moony."
Read more here

Why it's important that I stopped eating the leftovers

Everyone does it. There's leftovers in the fridge. It's not a mealtime and you are a little peckish so you eat it. That's not so bad. My problem was I ate it before it came off the kids plates.  It's got to be fairly common for anyone with young kids but I started to realise I was eating two meals at each sitting in secret. I didn't feel great about it and as I started to think about it the more I realised it was important that I stopped.

When Jane was two we went along to one of the local Children's Centres for her two year check up. I'm not sure what they checked, it actually appeared to be a short parenting class. All the first time mums had questions that I could answer better than the health visitor.  Its even possible I corrected her about a local service when she got the details wrong. The only useful tip I got was about child sized portions. Apparently a portion is about the size of your fist. This goes for adults, kids and toddlers alike. This was great, Jane finally started clearing most of her plate. But then, she's not the problem plate.

Our eldest, Anthony, has Autistic Spectrum Disorder and Attention Deficit Hyperactivity Disorder. He uses up a lot of energy, is super lean and so eats like a horse. His plate can easily be described as an adult size portion and virtually everyday he clears it. He's helped by the fact that he likes almost everything we put down to him. That's because we design it that way. Like his younger brother, he has issues around eating that aren't just being picky. He finds textures, particularly mixed textures difficult. He gets tired chewing food really easily. Strong flavours used to overwhelm him and he's also quite sensitive to the smell of the food.  This is great if it smells good.  He'll be excited about dinner before anyone else because he can smell it from elsewhere in the house, particularly if contains garlic.  Italian food is very popular in our home.  

So given this, Jane and Anthony were now eating most of their dinner. With only David's plate left why did I still feel like I needed to hide the fact that I was finishing his meal?

David, Anthony's younger brother also likes garlic. But only when it's on garlic bread. Like many kids with autism he has a restricted diet. He has many of the same issues Anthony has (or had), but worse. A while ago I noticed he was refusing more and more things, even some things he had eaten before. I began to think that if it continued my almost five year old child would only eat Shreddies, chicken nuggets and brown cola junky ice lollies. You may think I'm joking, but I knew of an autistic boy that only ate red baby food and cupcakes with blue icing. 

And so began the process of expanding David's diet. I'll write another time about our ABA type approach. Needless to say there is usually leftovers of rejected food everyday. I don't like waste, especially food waste, it seems so ungrateful to throw it away. I can't feed it to the dog, he's got 'food intolerances'. So I eat it. 

What's worse, is that it takes so long for David to eat the rest of the food he hasn't rejected and for us to trial through new foods that I'm usually left eating leftover food that's gone cold.  With a plastic spoon too. 

And what's a few mouthfuls? Well, I definitely don't need any more food so it's just pointless calories. But I'm also a bit of a stress eater. I think I've figured that eating the leftovers straight after they've been rejected (again) was quite depressing. It was like I was eating the failure.  I couldn't get him to eat something... again. It was as if  I had to hide what wasn't eaten. Like it was better to feel a bit guilty about eating the leftovers than feeling like a failure for not getting him to eat it.

Darling son. How dare I.

Once I realised that this wasn't a failure on anyone's part, once I saw a bit of progress was being made and once I knew that eating the remains of David's meals was making me feel bad, I suddenly felt better.

I now put David's half full plate under the pile of other plates in the sink. It's just a few mouthfuls and I still don't like throwing it away. But, it's better that I waste a forkful than waste my efforts on feeling like a flop.  David's adorable, and so are the other kids, so I can't be doing that bad a job.

Links
Our blog - Double Rainbow and Breakfast
Our blog - Are my kids in need of someone better?

External Links
National Autistic Society - Sensory issues

Gloves, glorious gloves! A moment of magic with my autistic son

It started to get much colder this week. David's not great with wearing unfamiliar clothes. Unfamiliar things can be scary for anyone and it can be even harder if you are a kid with sensory issues. 

Two and a half year old Jane has been wearing gloves (well mittens actually) for a long time. Hilariously she even wears them eating ice lollies in the house. David's older brother has been told to put his gloves on every school day for the last two months as he scoots to school. 

I've been saying the word a lot and I guess David must have been listening and watching because when I said 'gloves on' to him, he held out his hands. 

He and I and the other kids were going to our local playground. In some ways it's better when it's cold because the playground is quieter.

David held my hand and we walked slowly down the road to the playground that's not far away at all. Did I say slowly? 

The reality is we had a great time taking a very long time to get to the playground:

David checked to see that he could still count his fingers when he had gloves on. Check! 

He made sure he could still clap. Check!

He checked that they felt soft on the outside too, by rubbing his cheeks. Check!

Then we stood still for a minute while I copied every glovey move he made. He covered his ears, then his mouth.  He put his hands like antlers, then just one antler, then the other. Then back on his cheeks, and then covering his eyes. I copied him exactly and he watched me intently and grinned hugely, and didn't notice when I peeked through whilst covering my eyes (after all, I had another child in tow).

This was almost a type of intensive interaction if you've heard of that before. 

Best of all, after we got to the park David found that he could hold on to the bars and play equipment for as long as he liked and his hands didn't get cold. We headed back home a little early when Jane slipped into a muddy puddle, but no one was upset about it. 

Great cold trip to the playground. 

Links
Our blog - A ray of sunshine, autism in the playground 

External links
What is intensive interaction? 

Why ALL forms of communication are awesome in autism

"Does he have any more words yet?"

"Does he talk, does he say anything at all?"

A mum at a special needs playgroup once said to me, "I'm just desperate to hear her voice and hear her say mummy. Can you imagine not hearing that from one of your kids?"

Of course, I can.

However, I believe this mum made a basic error in her comment. True, her daughter doesn't talk, it doesn't necessarily follow that she doesn't have a voice.

Our son David has autism and no, he doesn't say any actual words. He uses makaton sign language most of the time. He sometimes uses PECS which is a series of picture cards to form sentences and he often vocalises with both of these. Without sign or PECS it would be extremely difficult for anyone to understand what he was saying. But trust me, my son has a voice.

He tells me when he wants something and tells me when he doesn't. He tells me when he's having fun and when he's distressed. And he's more likely to sign 'daddy' than 'mummy'. After all, why request me? I'm always here.

About a year ago David's signing vocabulary started to expand far beyond the 20 or so words he knew that mostly related to asking for his favourite food items. He started signing 'swing' in the garden and 'house' when it was time for home.

One afternoon I was retrieving him from the car after returning home from his nursery. He held me tight as I went to release him from the car seat. I took the opportunity for a hug and said 'hug' as I squeezed him awkwardly. I went to get him out for a second time and he grabbed me again. This time I stood back and said and signed 'hug'. Then I asked him what he wanted.

For the first time, David signed hug. I was close to tears. I praised him and he giggled, juggling around as I nearly crushed him. We continued signing and hugging for at least two minutes if not more. Soon, my daughter who was sat on the other side of the seat started asking for a cuddle too so we went into the house.

David may not say many words but we are working with him to help him say more. We have a great speech and language therapist that works with him and us. He will 'fit in' more if he talks, but even when he is older he could be like the other 25% of people with autism who are non verbal. Fitting in is not what we are after, unless that's what he indicts he wants of course.  Talking is not the be all and end all. He expresses his opinions and often understands situations. That's not even considering the progress he's made with his receptive language (the language he hears) such as following instructions.

I think David has a fine voice. Did you know a baby has to hear hundreds of repetitions of words to pick up them up. Everywhere they go, babies are listening and adding to their words lists. Imagine though that the baby didn't hear any of those words because they weren't engaged with them. I think David's had to pick up sign via a much shorter number of repetitions, just like hug above, because it's not happening everywhere.

No one signs at the shops, in the playground nor most other places we go. We don't even all sign to each other in the house, but that hasn't stopped him. And overall his I was far more delighted with his desire to sign and have a hug that I am about his perhaps odd attempt to say mummy. Even if he was only asking for a squeeze to help fill his sensory needs - he's getting what he needs.  And that or showing affection seems a fantastic way for him to use his voice if you ask me.