Tuesday, 12 June 2018

Five simple overlooked expenses linked to having our autistic kids

Autistic boy sitting on grass

A quick search online will reveal a that there's plenty of expensive equipment that we could buy for our autistic boys. But the truth is that some of their autistic traits have some easily overlooked ways of costing money.

We haven't spent £500 on a squeezer for sensory feedback or bought one of those truly expensive weighted blankets that can help some kids with autism sleep (actually we borrowed / made one).
There's some great sensory items that we have bought but here I'm covering some of the everyday overlooked items that are either a trial and error or the replacements and repairs that soon add up.

1. Out and about food
Many autistic kids have difficulty with different foods.  Textures, different wrapping or looks, even eating in an unfamiliar place can make some autistic kids unsure and prefer to go hungry.  So we often take food with us to be on the safe side but will still try eating when we visit places and attractions.  Often this means ordering or trying nearly everything in the hope that the kids will eat... something.

It's not even mostly meals, its the snacks and treats.  For example, at a local attraction, Jane wanted an ice lolly.  As we've got three kids, it's only fair to offer it to them all.  However, David couldn't translate the pictures of ice creams and lollies from either the wrapper or the images on the side of the hut to figure out what he wanted.  He's also pre-verbal which means he says very little and so it was even harder for us to figure out what he wanted.

We had to buy, and then open, 13 different ice-creams and ice lollies so David could choose just one. £35 so David could have an ice-cream.  Nine kids got a free lolly, because I couldn't eat all the leftovers and it seemed daft to put them all in the bin.

2. School shoes
I know every child grows out of their school shoes but our Anthony's shoes don't get the chance. Anthony has hypermobility in his knees and hips but more importantly he is very sensory seeking and walks on his tip toes all the time.  He literally breaks his shoes at the toe line and needs a new pair every half term.  In addition because he's on his toes all the time we buy him school boots to help prevent his calves from shortening.  So each pair is £50 instead of £30.

The only time he hasn't tip toe walked was recently when his sensory seeking and inability to focus meant he dropped a bench on his toe.  We had to take him to A&E for another autism related injury and had to cut up a pair of trainers for him to wear over his bandaged broken toe. That'll be another air of trainers too then.

3. Tablets, phones and the like
Unless you've seen my kids you'd think these were luxury items. Unfortunately when you jump around, climbing and enjoy dropping things from height because of the sound and are a bit unfocused, it's a bad combination.  We've learned that an iPad can work with a really cracked screen, but only up to a point.  I  don't know how many phone screens I've replaced. We've paid plenty of insurance excesses for device replacements.  It's also good practice to back-up our important devices too.

4. And so.. protectve cases
We still manage to break 'unbreakable cases'.  If you are interested the best one's we've found for iPads are the Griffin Survivor ones.   This may sound like a regular kiddie issue but it's not a just a toddler dropping a phone.  Fine and gross motor skills difficulties and poor sensory feedback is very common in people with autism.  Our eldest son literally cannot tell if he is holding something with the right amount of grip and his constant need for feeling what he's does with his hands and fingers means his fingers are constantly re-adjusting.

These motor and sensory challenges also means the boys are far more likely to fall over than there neurotypical peers. So along with the greater likelihood of breaking whatever they are holding they may also break whatever the crash into.  The house is full of table and furniture bumpers. We use the foam ones as they are easy to replace when they get broken and come in lots of colours to match the furniture.

5. Dummies/Soothers
David finally went dummy free in October 2016, but I still I should have bought shares in Avent. We had several dummies on our home every day for over eight years!  Another part of the strange way my boys process how things feel is that they both constantly wanted a dummy - this is part of them being very orally stimulated (nope, that's not rude). Both my boys liked to chew and suck on things as a way of balancing how they felt and particularly coping with stress. A bit like some people may bite their nails.

Dummies provided my kids with a security and this meant they were used a lot and far beyond their recommended years. And during that time we've been helping the kids cope with many parts of their autism. This has included in David's case poor sleep and night waking and it was only when this got better that the dummies were out.

David in  particular would also chew on them.  The slightest split would mean that dummy would need to be replaced as it was too much of a risk that our child with a full set of teeth could tear and swallow the plastic in the night.

There were 20 in the house the day we finally got rid of them.

Like the title says, these are some of the little unexpected expenses.  We take them as part of family expenditure but honestly get off very lightly.  Fellow mums I was chatting to who also have autistic children, have highlighted much larger expenses:


"Having to replace ceilings and floors because we've flooded the house again - we have problems with bathing and the sensory issues around that."

"Replacing large pieces of furniture and having to constantly redecorate due to their destructive behaviours."  

"Spending a fortune on clothes because the slightest bobbling or change in the clothes after a few washes stimulates our child's sensory system so they refuse to wear them"

So overall I think I get off quite lightly.  The up side for me though is that my kids are gorgeous and if I've got to spend money on something, it might as well be them.  Plus every now and again I get to give nearly every kid in the playground an ice-cream.

8 comments:

  1. I love your attitude to your kids, what better way to spend your money than on the kids you love. I feel for you with school shoes though, they are such a price #KCACOLS

    ReplyDelete
  2. I know all children are expensive, but I never knew there were so many extra expenses for parents with autistic children before reading this. Thank you for teaching me something new.

    ReplyDelete
  3. I have a friend with 2 autistic sons and for her youngest I ask her what she needs for him for birthdays/christmas as she too has to buy certain items and certain foods for him, the expense really does add up! #kcacols

    ReplyDelete
  4. I hadn't really considered the possibility of all these extra expenses before, and it must all add up to quite a lot. And I can't believe how expensive school shoes are! It's good to increase awareness of these things that perhaps wouldn't have occurred to most people - thanks for linking up with #KCACOLS!

    ReplyDelete
  5. Wow it's amazing how much these little things can add up! #KCACOLS

    ReplyDelete
  6. I still know very little about autism to be honest and can only say that it sounds like you're on an incredible journey. #kcacols

    ReplyDelete
  7. They're expensive things kids! If only somebody warned us...! #KCACOLS

    ReplyDelete
  8. Then parents might do things in order to help see that need gets met in positive ways. Open, and non-judgmental, communication with kids about their friends can strengthen parent-child relationships and provide support for their kids as their kids learn to take responsibility for their own choices.Sportiniai vežimėliai

    ReplyDelete

I read all your comments and appreciate you sharing your thoughts with me and our readers. I welcome any feedback on my posts and you can always contact me directly. Thank you.

What is Autism?
It's so much I couldn't possibly try and explain. For us it's wonderful and heart-breaking. Joyous and truthful. But as far as diagnosis is concerned, why not have a look at the National Autistic Society for their definition of Autism.
Follow
@rainbowsaretoo facebook.com/rainbowsaretoobeautiful Ann H on Google + rainbowsaretoo pinterest rainbowsaretoobeautiful bloglovin Instagram rainbowsaretoobeautiful
TOTS100 - UK Parent Blogs
TOTS100