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ONE MOTHER’S STORY OF RESOURCES THAT HELP HER DAUGHTER

I am a mum of a child with FASD.

In 2018 my daughter’s OT recommended several sensory products that might assist her. When I went to purchase these things, I was sadly disappointed at the quality and practicalities of the items available. I also faced the uphill battle of meeting her needs, both at home and at school; not upsetting her siblings or her teacher ‘with those noisy, disruptive fidget things’; and distracting others around her.

As an avid craft lover and owner of a small business, I decided to do my own research, design, and create my own sensory products that would hopefully meet the needs of everyone.

I started with a weighted blanket.

There are many benefits to having a weighted blanket. Some of these are:

Creates a calming effect; reduces night-time movement; Increases the feeling of security; calms people with Sensory Processing Disorders; and improves sleep.

The principle of a weighted blanket is to evenly distribute approximately 10% of the user’s body weight over them. The catch is the commercial blankets distribute the weight evenly throughout the entire blanket which means a large portion of the weight is not centred over the body. I design my blankets to have the weight evenly distributed over the centre of the blanket, allowing the outer part of the blanket to be used just as a blanket. You can snuggle into it without having the weight pushing on your neck; not drag your feet down; and you can tuck it in around your body. Most importantly though, the weight is focused where it should be…. over the body.

After doing the research, designing the blanket, and making it, my daughter hated sleeping with it! She loved using it on the lounge and it works great in calming her and settling her down to watch a movie but what was I to do when it came to bedtime?

When the weighted blanket failed for bedtime, the OT suggested purchasing a bed sock. So, off I went and researched the benefits and design of these.

A lycra bed sock is designed to help calm and settle the user. It goes over the mattress, much like a pillowcase on a pillow. It provides deep pressure and helps calm down the user. It allows them to stretch and move about but remains over them, keeping the pressure on them when they settle. It also doesn’t fall off the bed, like a weighted blanket can!!! (Especially if the weight goes to the edge of it.)

I purchased one online, paid a fortune for it, and it didn’t work.

You see, it was not long enough. The one I purchased only went up to the base line of the pillow so when she got into bed and snuggled down in the lycra sock, she needed to be halfway down the bed. Obviously, this wasn’t going to work, so I designed one that went the full length of the bed. That way, when she got in, the top of it would come down to the base of the pillow, allowing her to pull it back up around her shoulders and use the full length of the bed. Once I made her one that worked, it was the best thing ever!! It meant that she had quality sleep; was much nicer to deal with the next day; had less melt downs and was more focused, all because she had had better quality sleep. I was also much happier too!

My next project was school. How was I going to help meet my daughter’s needs at school and not cause grief for the teacher or disturb the rest of the class?

When I first spoke to the teacher and told him that she needed sensory tools to help her, he was adamant that this was not going to happen. He acknowledged that she needed help and support but did not want to be meeting her needs at the detriment and distraction of the rest of the class.

I understood where he was coming from, but also knew that she needed help.

Weighted lap pads are great and can help a lot, just like sensory/fidget things can too. So, I made her a weighted lap pad and a silent sensory cover for it. This enabled her to have her needs met and kept the teacher happy. You see, the lap pad cover has lots of different sensory activities on it, all of which are silent, and it is on her lap under the desk so no one can see what she is fidgeting with. Win/win!!!!

From here my imagination started to run. Still to this day I have more ideas in my head than I have hours in the day to make them.

I have made marble mazes, large and small; bracelets; never ending fidget balls; beaded mittens; textured lap blankets; playing card holders; weighted toys (both new and preloved favourites); sensory boards; and much more. I have even had some clients work with their therapist and me and design their own things. Having them involved also increases their wiliness to use it.

The biggest thing is that we all must be able to live together, and meeting one person’s needs may cause grief for the next. Really listening and talking to all involved including the person; their family; their teachers; their therapists and anyone else involved, has enabled me to design and create all sorts of things that meet the needs of the user and those around them.

If you are interested in contacting Marie about producing an item to assist your child, you can email her at: grandmasgiftsandcreations@gmail.com

NOFASD Australia reminds parents and carers that tools such as weighted blankets and fidget toys while very helpful for some children with FASD, may not be effective strategies for other children. If you are working with a therapist, please discuss these options with them in the first instance.

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