We had a researcher with us yesterday and today.

She left the hussle and bustle of London and flew over to the visit us in the Northern Irish countryside.

To meet our unique and precious little girl. 

It was actually the researcher’s first time in this part of the UK.

You may wonder why I would bother volunteering to take part in a research project with my daughter who has special needs. 
 

Surely I have enough on my plate already with her and her three older sisters…

Well, yes, I have plenty of things going on and commitments. 

But I felt this was important for me to make time for.

Let me explain. 

My four year old Brielle has a very unique set of abilities and disabilities, and she is part of a small understudied population. 
 

She is diagnosed with MSI (multisensory impairment), or as deafblind, along with a whole plethora of other things.

This particular study aims “to compare the pre-verbal communication and sensory profiles of these children (with MSI and ASD) to better understand the differences, similarities and their source.”

I tend to jump on any opportunity to find out more about Brielle’s conditions and unique needs. 

I have no problem filling out assessments, questionnaires, or surveys if it will shed some more light on where she is at.

Completing these forms is a good way of processing and documenting her current level of development, communication, abilities too. 
 

I can look back on some of these, read comments and scoring and she how she has progressed.

I also feel like we have somewhat of a duty to share her/our experiences as she is part of such a niche group.  

And research like this can only serve to benefit her and others in similar circumstances.

I’m very interested myself to see what the findings of the research are. 

Who knows what great ideas or tools for parents, professionals, teachers, you name it, may stem from this very research.
 

When the kids grow up a bit, I dream of doing my own research. 

Not sure exactly what yet, but I do have a few ideas. 

Something that will help other families like ours, or promote health for kiddos like Brielle. 

I need to update my nursing first and get back to University. 

Though I must get Brielle settled into “big school” first!

All that being said, I would highly encourage you to step out of your comfort zone and take part in studies and research if the opportunity does arise. 

You will learn so much and have potential to help many children!

More like this please...
 

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