What not to say to a special needs parent

We've all had some unwanted advice, reactions, and opinions regarding our situations  and here are some of my *not-so* favorites...

1. "Oh but they look so normal"

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ummmm... thanks?

2. "I never would have guessed!"

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great...?

3. "Have you tried changing their diet?"

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Thank you but assume we have tried it all!

4. "They need more discipline"

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right... I hadn't thought of that...


5. "vaccines can cause autism"

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please just go away.



6. "They never had any of these disabilities when I was young"

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They did. Only people were institutionalised for it, labeled as "problem children", shunned from society, and symptoms of many disabilities were unknown to many doctors until recent years.

7. When someone apologises for your child's disabilities. 

While I know many peoples intentions are good, it's not the greatest things to hear when we are a special needs parent.  I would love to hear some of your alternatives!

The Weight of the World on your Shoulders

Many of you may have heard of weighted cushions, vests, and blankets before.  They are a great calming tool for many kids on the spectrum.  Here is a simple DIY project of how to make your own weighted cushion:

What you'll need: Fabric of your little ones choice, calico or another strong fabric, rice (I used 3kgs), and patience for sewing! 

Step one: So that this can be made to your own specific size, lay out the desired weight of rice along the calico so you can use that as a base for your measurements.  I felt 3kgs would be a good weight for Maddy so that's what we went with (you can make this as big or as small as you desire - within reason of course!)

Step two: Sew up the end of the calico twice to ensure none of the rice sneak out!

  

Step Three: Fill up the calico bag with the 3 kilos of rice or alternatively to keep the rice spread out evenly fill with 1kg then sew a line to divide and continue with the 2nd and 3rd kg bags of rice sectioning off between them also. 

Step Four: Once you have secured the rice in there with the most extreme end stitching you can do, lay it flat on the table to measure the cover fabric.  Ensure one of the sides of the cover fabric is slightly longer so that you can achive a 'pillow like' close when the cover is put on.

Step Five: Admire how cute it looks!

I decided to make 2 separate covers so that we can remove and clean if there are spills etc.  This also meant that Maddy got to choose more fabric which she will never complain about!

Here is our second cover

It is recommended not to exceed 10% of your child's body weight when getting them used to weighted therapy (which is why I chose 3kgs for my daughter.)  They should use it during such activities like: Start of the day, during written work or homework, during stressful activities (base this on what you child feels anxious about whether it be meeting new people or doing the shopping), at the end of the day, during special classes such as music or art. The time shouldn't be more than an hour and there should be at least an hour break in between uses. 

The weighted cushion that I have created here is suited for her to use at home or at school.  I designed it to be long because I intend to use it three different ways.  The first being when she is laying down on the couch with her feet up and the cushion on her lap at the start and end of the day, the second is on her shoulders when she is feeling anxious, and the third is across her lap when she is sitting at her desk at home or at school.

** Disclaimer** These weighted cushions should be used with direction or advice of a therapist, and should only be used while under adult supervision - in case you didn't already know :)

DIY Scooter Board for OT

This weeks project for us was making Maddy a scooter board for her OT at home.  Not only did this save money instead of buying one, but Maddy got to personalise it by choosing her own fabric cover so it became more ‘hers’ and the chance of her actually wanting to use it increased straight away!!!

First step was a trip to Bunnings (or any other hardware shop!) to get the castors and handles (these are optional, we didn’t end up using them) We used some wood that we already had at home but if not get some while you are there!

Next was Maddy's favorite part, going to Spotlight to choose her fabric.  Make sure its thick as it will cop a beating over time! Darker colours would also work better as you will only be able to spot clean it when it is dirty.

Then swing past Clark rubber and collect your foam cut to measure and your foam adhesive spray.  We chose foam that was a few inches thick and quite firm to support Maddy’s weight.  Our foam cost around $15.

Once you have prepped the wood, drill the castors on, spray the adhesive and attach the foam, we left it to dry for several hours then.  Cute the fabric to size then use a staple gun to attach it to the under sides.

A scooter board purchased from a store is usually made from plastic.  They also don’t have a foam layer.  We thought to make this as user friendly as possibly for Maddy that we should make it as comfortable as possible so there wont be complaints (since the scooter boards are typically ridden on their belly's!) 

We got the tick of approval from Maddy, she absolutely loves it and the bright neon fabric she chose really suits her :)

For some scooter board activity ideas, here are some great activities online: 

http://therapyfunzone.com/blog/2011/07/10-activities-to-do-on-a-scooter-board/ 

http://missmancy.com/scooter-board-rainbow-game/

http://goldenreflectionsblog.com/2013/02/ot-tip-scooter-board-activity.html

Down the track I will hopefully be able to blog about some of the activities that we use the scooter board for.  One tip to remember is to make sure your little ones 'boobies' are off the edge of the scooter board, that's how you know that are on it properly when they are using it on their tummy.  

*Make sure if your child has long hair that they tie it up before using the board! hair + wheels = not good!